Journal of Disability

2012 IASSID World Congress 655
Linking local voices to global change K. Lachwitz Inclusion International President This presentation will highlight the UN Convention on the Rights of Persons with Disabilities (CRPD) and the priority articles that have been identied by persons with intellectual disabilities and their families. Successful implementation of the CRPD requires a common progressive interpretation. The CRPD was directly informed by the voice of persons with intellectual disabilities and families and demonstrates that persons with disabilities and families, through their lived experience, are the experts in disability. Our efforts in legislative reform, policy, and programmes must be reective of this. Currently, there are differing and conicting understandings of core concepts like supported decision making in Article 12; living and being included in the community in Article 19; and, inclusive education in Article 24. The CRPD represents a fundamental paradigm shift from guardianship to full legal capacity; from congregate care to supporting people in their community; from segregated schools to inclusive classrooms. This presentation will highlight some of the challenges in making the paradigm shift required by the CRPD. It will describe IIs interpretation of Article 12 and give an overview of IIs global campaign on Article 19. By sharing the voices and perspectives of persons with intellectual disabilities and families from around the world this presentation will be anchored in the lived experience of disability; speak to the challenges and opportunities families and individuals face on the ground, in their daily lives; and, identify innovative solutions for moving forward to make the CRPD real and meaningful. Health disparities and intellectual disabilities: What do we know? What must we do? G. Krahn (gfk2@cdc.gov)* *Division of Human Development and Disability, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, US Health disparities provide a valuable lens for crafting a public health approach to intellectual disabilities. It assumes equality in health status and presses for answers to why differences exist. This presentation will draw on earlier work that depicted a cascade of disparities resulting in poorer health outcomes for people with intellectual and developmental disabilities. It will ask and begin to answer what we know about health disparities, what we dont know, and what we must do to reduce disparities and improve lives of people with intellectual and developmental disabilities. Women with intellectual disabilities:Their sexual lives and reproductive health care needs M. McCarthy (M.McCarthy@kent.ac.uk)* *Tizard Centre, University of Kent, UK This plenary address will give an overview of research ndings related to the sexuality and reproductive health of women with intellectual disabilities. Based on my own research and practice over the past two decades, this presentation will examine ndings which suggest that very many women with intellectual disabilities experience their sexuality negatively. I will offer an analysis of the reasons for this and examine what, if anything, has changed for women with intellectual disabilities over the past 20 years. In addition, the womens reproductive health needs will be discussed. Womens ability to exercise control over their use of contraception will be explored, and the factors which enhance or constrain their ability to make choices in this area will be analysed.
Plenary Presentations
Understanding intellectual disability and aging from a public health perspective H. Evenhuis (h.evenhuis@erasmusmc.nl)* *Intellectual Disability Medicine, Department of General Practice, Erasmus University Medical Center, Rotterdam, The Netherlands Whereas premature aging has only been conrmed for persons with Down syndrome, early functional deterioration is also found in many persons with an intellectual disability (ID) by other causes. The idea that ID predisposes for premature aging is generally accepted by professionals working in this eld, but is not supported by early occurrence of atherosclerotic cardiovascular disease or cancer. Evidently, there is an increased age-related vulnerability in this population, but its character is unclear. Although epidemiologic research into aging in this population is still scarce, the following threats for healthy aging can be distinguished: motor and sensory impairments, multimorbidity, multipharmacy, unhealthy lifestyle, poor detection of risk factors for cardiovascular disease, incomplete participation in population screening, and missed diagnoses due to communication problems. A majority of these threats are preventable or reversible. However, so far, the character and consequences of this age-related vulnerability have not been studied from a public health perspective. During the last decades, new public health concepts have been subsequently developed and operationalized for large-scale geriatric research in the general population: healthy/unhealthy life years, frailty, sarcopenia, multimorbidity. The study of these concepts in the population with ID is hampered by problematic self-report, so the necessity of time-consuming objective health checks, as well as uncertainty about the validity of current operationalizations for this population with lifelong disabilities. After a general description of these concepts, their operationalization, and their validity against negative health outcomes and dependency, we will present rst prevalences, distributions and associations in the 50+ population with ID, based on the latest results of the Dutch Healthy Ageing and Intellectual Disability (HA-ID) study, followed by a discussion of validity and consequences. Adolescents and adults with autism spectrum disorders and their families: Bi-directional inuences M. Mailick Seltzer (mseltzer@waisman.wisc.edu)* *Waisman Center at the University of WisconsinMadison, US Although autism spectrum disorders are generally diagnosed in childhood, these individuals often need supports from family throughout their life course. This presentation will trace the longitudinal course of autism symptoms, behavior problems, and functional abilities in individuals with ASD during adolescence and adulthood, drawing on a 12-year longitudinal study (n = 406), and will examine the reciprocal inuence of the family on adult outcomes as well as the inuence of the individual with ASD on family well-being. The longitudinal data show a reduction in the severity of autism symptoms and behavior problems in adulthood, although this pattern of improvement slows down after high school exit. Functional abilities improve during adolescence but level off thereafter. Family climate can have a positive inuence on the course of change in autism symptoms and behavior problems. However, daily stress levels in mothers of individuals with ASD are high, and their health symptoms are elevated relative to national US levels. Implications for family support and services for individuals with ASD throughout the life course are emphasized. Article 23: The right to marriage and family D. McConnell (david.mcconnell@ualberta.ca)* *Faculty of Rehabilitation Medicine, University of Alberta, Edmonton, Canada A gulf exists between the rights and the realities of parents with intellectual disabilities. The UN Convention on the Rights of Persons with Disabilities afrms the rights of persons with disabilities to marry and found a family. Further, in Article 23, states parties are bound to take effective action and appropriate measures to eliminate discrimination . . . and render appropriate assistance to persons with disabilities in the performance of their child-rearing responsibilities. The brutal reality however is that parents with intellectual disabilities face discrimination, rarely receive appropriate assistance, and many have their children taken from them by state authorities. In this address, Dr. McConnell will synthesise evidence from research conducted in Australia, Europe and North America; he will identify social and systemic barriers to the participation of persons with intellectual disabilities in the parenting role; and, discuss potential solutions, including recent developments in high-income countries around the world.
2012 The Authors. Journal of Intellectual Disability Research 2012 Blackwell Publishing Ltd
Journal of Intellectual Disability Research 656

Families and developmental disability: Issues of quality of life in broadening the research to practice agenda R. Brown (roybrown@telus.net)* *University of Calgary, Canada & Flinders Universty, Australia Fifteen years after I attended the 1960 Conference in London the precursor to the formation of IASSID Charles Hannam, a lecturer in education and father of a child with Down syndrome wrote his poignant book, Parents and Mentally Handicapped Children. His account is a blunt, honest and at times devastating account of what his family and other families were experiencing. Since then much has changed and intellectual and developmental disabilities now have a growing place on the world platform. But not all changes have resulted in relief and support for families. It can be argued that in the western world the overall quality of life of many families may have decreased as family care has replaced institutionalization. Families in the middle and lower income countries face even greater challenges as they seek advancement. Many more infants survive the birth process than in Hannams day and many require support and help over their lives. Many children are severely and multiply handicapped and often have no employment in later life. Progress has resulted in an increase in life expectancy for people with disabilities, but this too brings challenges for families. Family effectiveness can become associated with a spiral of decline in family quality of life. Welcome change from institutionalisation can nevertheless result in greater exclusion as some families struggle in their communities, ignored or left to raise their children, while caring for a child with a severe disability. Support is often provided through government agencies and local services but is the focus of service as broad and family oriented as it could be? The presentation examines some of these issues and argues they represent a serious challenge for scientists, practitioners and policy makers. What are our roles as scientists, and professionals in daily front line practice and in the development of policy concerning families? National Core Indicators: Outcomes and services for adults with intellectual disabilities R. Stancliffe (roger.stancliffe@sydney.edu.au)* & S.Taub (STaub@hsri.org)** *Disability Studies, University of Sydney **Human Services Research Institute, Cambridge, MA, US In the U.S. since 1997, the National Core Indicators (NCI) program has conducted an annual, multi-state, cross-sectional survey of service provision and consumer outcomes as part of a collaborative effort to establish and maintain a standard set of performance data. NCI is a valuable tool for managing and improving public service systems as well as a rich source of data for research analyses. The survey includes data on randomly selected state samples of adult consumers, with information on individual characteristics, service utilization and outcomes. These data have formed the basis of a series of papers on choice (including choice of living arrangements), loneliness, wellbeing and satisfaction, uptake of aided augmentative and alternative communication, obesity, service costs, community participation, and preventative health services, as well as information on service use, characteristics and outcomes for diagnostic subpopulations with Down syndrome or autism spectrum disorder. The NCI survey utilizes both proxy and self-report data, information that has allowed examination of rates of self-reporting and of the relationship between these two data sources. This program of research demonstrates the value of large, multistate, policy-relevant, ongoing data sets that can be used to examine key outcomes, while controlling for important demographic, diagnostic and service variables.
After normalization reforms Changing drivers of change J.Tssebro (Jan.Tossebro@SVT.NTNU.NO)* *Norwegian University of Science and Technology, Trondheim, Norway Background: In the 1990s, the Nordic countries saw a second phase of normalization. There was a vitalization of the concept of normalization, an intensied debate on service quality and structure, and new social reforms. All countries increased the rate of resettlement into community, and two countries, Norway and Sweden, closed all institutions. The reforms were policy-driven, advocated by parents associations, and adopted by central governments. It was part of the reforms to transfer services to the generic service system; that is, to local (municipal) authorities. Thus, it was up to relatively autonomous local governments to make real the intentions of the national reforms. Aim: The aim of the presentation is to analyze trends in service provision after the reform energy faded and the new service system was in everyday operation, and also to discuss how the new context changes the drivers of change. Method: The description of trends is based on systematic data on services and living conditions for intellectually disabled people in Norway gathered at four points in time from 1989 to 2010 (N = 385527), together with additional information from the other Nordic countries. Results: Findings include growing size of group homes, a move away from normalization principles regarding occupation and self-determination, and that revolving door staff becomes more typical. Discussion: The trends is discussed in relation to changing drivers of change, including exposure to trends and problems in local government management, a changing context of political accountability, the role of new public management, and the changing context for inuence of both parents associations and reformers among professionals. Future perspective on measuring outcomes and quality of life C. Lakin (Charlie.Lakin@ed.gov)* *National Institute on Disability and Rehabilitation Research, US This session will focus on the past, present and future role of the study of individual outcomes in achieving quality in community supports for individuals with intellectual disabilities. It will recognize major contributions of the study of outcomes in supporting and contributing to improved supports of persons with intellectual disabilities. Inclusive post-secondary education: A promising path to an inclusive life A. Hughson (hughson@ucalgary.ca)* B. Uditsky (buditsky@aacl.org)** *University of Calgary, Canada **Alberta Association for Community Living, Canada Inclusive post-secondary education has proven to be a highly effective means of enabling individuals with intellectual disabilities to pursue their dreams of a meaningful life, including those with severe and multiple disabilities. The presenters have been engaged, nationally and internationally, in the development of inclusive post-secondary education at universities, colleges and technical institutes for more than 20 years and across a number of different counties. This presentation will illustrate the remarkable successes consistently achieved from learning and belonging to nding meaningful employment. The experiences of parents, students, nondisabled peers and faculty will be shared. A DVD that powerfully highlights post-secondary inclusion will be featured. A new post-secondary inclusion evaluation guide for ensuring quality and continuous improvement will also be highlighted. Research conducted by the authors and others will be shared on the outcomes of inclusive post-secondary education. Examples on the courses, faculties and extra-curricular activities, in which students have been included will be noted. Over 70% of students secure employment, typically utilizing natural supports. Post-secondary inclusion illustrates the power and utility of harnessing community capacity to enable inclusion and raises challenges as to why the intellectual disability community is not capitalizing on this knowledge and practice to the degree possible.

CanAssist: A unique program dedicated to promoting inclusion and improving the quality of life of persons with special needs N. Livingston (njl@uvic.ca)* *CanAssist, University of Victoria, Canada CanAssist is a university-based service program that engages faculty members, staff and students from virtually every discipline on campus (including music, psychology, engineering, mathematics, linguistics, medicine, nursing and kinesiology) as well as community volunteers such as retired physicians, health care professionals, engineers and seamstresses. The program is dedicated to developing and providing empowering technologies and services that help persons with special needs increase their independence and quality of life. Over 200 novel technologies have been developed and thousands of people have directly beneted from CanAssist programs. Some of these programs go beyond technology and include Just for Kicks a soccer program for kids with disabilities as well as TeenWork a program that provides training and job opportunities for teens with special needs. Almost 5000 students have been engaged by CanAssist in various capacities and have been provided with deeply satisfying experiential learning opportunities as well as increased knowledge and awareness of disability issues. CanAssist works with people right across the disability and age spectrum. Its youngest client is 4 months old and its eldest over 100 years-old. Everything CanAssist does is in response to requests, either from individuals with special needs, their family members or friends, or from health care professionals. An overview of CanAssist will be provided with some reference to specic solutions and technologies. Finally, CanAssists vision for the future will be presented. From dialogue and Ideas to Empowerment and change: Ontarios groundbreaking Accessibility for Ontarians with Disabilities Act, 2005 A. Spencer (Alfred.Spencer@ontario.ca)* *Accessibility Directorate of Ontario, Ministry of Community and Social Services, Ottawa, Canada Ontario has a vision: creating an accessible province by 2025 where every person who lives or visits can participate fully. About 1.85 million Ontarians have a disability and face barriers to jobs, services and opportunities. As the population ages, that number will increase, as will the need for accessibility. With its groundbreaking legislation, the Accessibility for Ontarians with Disabilities Act (AODA), Ontario has become Canadas leader in accessibility and a model of public engagement, moving well beyond the traditional government approach to participation, outreach and consultation. Extensive collaboration was necessary to effect change and shift organizational cultures across the public and private sectors. As a result, open and transparent dialogue with business, the public sector, organizations representing people with disabilities and Ontario citizens has broken down silos within and outside government. This public engagement model has contributed to the successful implementation of cross-cutting accessibility standards that will affect 360,000 organizations in Ontario, including the provincial government. Through incremental steps and continued public engagement, Ontario is making meaningful improvements in the lives of people with disabilities and well on its way to achieving its vision.
Improvement of cognitive functions of DS patients by thyroid hormones and folate supplementation F. Sturtz (franck.sturtz@unilim.fr)* *Jerome Lejeune Institute, Paris In a clinical trial (ENTRAIN) (PlosOne, January 2010), the effect of folate supplementation on cognitive functions of DS children (3 to 30 months) was assessed by measuring the developmental age (DA) from baseline to the end of treatment (1 year). The intent-to-treat analysis did not show a positive effect of leucovorin treatment. However, a study conducted on a subgroup showed a positive effect of leucovorin on developmental age (DA). DA was 53.1% the normal value with leucovorin and only 44.1% with placebo (p < 0.05). This positive effect of leucovorin was particularly strong in patients receiving concomitant thyroxin treatment (59.5% vs. 41.8%, p < 0.05). This nding led us to investigate the connections between the metabolism of folates and that of thyroid hormones (TH). Indeed TH have been long known to be important both in neural development and in T21 patients (van Trotsenburg et al, 2006). Thus a clinical trial, called ACTHYF, with 4 cohorts (Folates, TH, both, neither one) has been set up and started in March 2012 at the J. Lejeune Institute, in Paris. Hopefully results will conrm that improvements of the psychomotor development of DS children are possible, provided close collaborations between clinicians and basic scientists.

Symposium: Health outcomes in adults with intellectual and developmental disabilities P. Davidson (phil_davidson@urmc.rochester.edu)* *University of Rochester School of Medicine and Dentistry, New York This symposium will present data on health status, health care utilization and functional abilities among three groups of adults: one with Spina Bida (n = 122), a second with Down syndrome (n = 60), and the third with Praeder-Willi syndrome (n = 38). All three groups were recieving their health care at tertiary care centers managed by our collaborating partners. The group with Spina Bida was from Syracuse, New York, USA, subjects with Down syndrome were from Rome, Italy, and the subjects with PraederWilli syndrome were from Providence, Rhode Island, USA. Data collection was by chart review, using the Rochester Health Status Survey-IV, designed to record demographics, severity of intellectual and developmental disabilities, prevalence of diseases or health disorders, level of functional independence and health care utilization in adults. Results differed across the three diagnostic groups, especially with regard to degree of morbidity and access to health care. Our ndings should be of use to policymakers in planning for expansion of health care services to adults, and older adults, with intellectual and developmental disabilities.
Aging and Lifespan
Symposium: Health outcomes in adults with intellectual and developmental disabilities (continued) Health outcomes in adults with Down syndrome C. Condoluci*, G. Albertini, L. M. Robinson & P. W. Davidson *Casa di Cura San Raffaele Pisana, Rome, Italy Aim: This study identied the incidence and prevalence of health conditions, and patterns of health services utilization of adults with Down syndrome (DS) receiving outpatient services at a specialty hospital in San Raffaele Hospital in Rome, Italy. Method: Medical charts of 60 adult patients with DS were abstracted by a hospital physician using the Rochester Health Status Survey (RHSS-IV). Results: Of the cohort, 48% were female. The mean age was 32.5. Subjects averaged 3.8 organ system disorders (OSD) per person. Sixty-four percent were overweight/obese and most were not prescribed a diet (73%) or exercise (83%). The most common OSDs were ophthalmologic (77%), dental (45%), endocrine (38%) and psychiatric (35%). Blood pressure, weight, and glucose screenings were almost 100%, but preventive measures for other health issues were underutilized. Most notably, only 3 females had a cervical exam, and only one had a PAP smear. Conclusions: The number of comorbidities for people with DS can be expected to increase. Until guidelines specic to the DS population can be created, following the screening recommendations for the general population is recommended.
Life course health patterns and health care utilization among adolescents and adults with Spina Bida: Preliminary ndings P. Davidson (phil_davidson@urmc.rochester.edu)*, G. S. Liptak, L. M. Robinson, N. P. Dosa, A. Dziorny, R. LaValley, M. G. Flaherty, K. Nobis, C. M. Henderson & P. W. Davidson *University of Rochester School of Medicine and Dentistry, New York Aim: Spina bida is a complex developmental disability with physical and intellectual impairments that has major impact on a persons well-being, activity and participation. The aim of this study was to evaluate the impact of spina bida on health status and access to care in a cohort of youth and adults. Method: A survey was conducted with youth and adults with spina bida. The participant group had 122 individuals with spina bida aged 16 to 59. Results: Twenty-ve percent (25%) of the sample lived independently while 34% were employed. Individuals surveyed had almost seven different affected organ systems. Fifty-nine percent (59%) reported having good or excellent health. They averaged four visits to a specialty health care provider in the 24 month period preceding the study and 71% reported having difculty accessing health care, which was associated with worse overall health. Hospital admissions and acute visits to the primary care physician were associated with having shunted hydrocephalus, while visits to the emergency department were associated with having a decubitus ulcer. Conclusions: People with SB are medically complex; they have multiple organ systems involved and report lower than typical overall health. Health outcomes in adults with Praeder-Willi syndrome L. Robinson (LauraM_Robinson@urmc.rochester.edu)*, J. Zarcone, R. Fortuna, K. Nobis, J. Meccarello & P. W. Davidson *University of Rochester School of Medicine and Dentistry, New York Aim: This study identied the incidence and prevalence of health conditions, and patterns of health services utilization of adults with PraederWilli syndrome (PWS). Methods: Medical charts of 38 adult patients with PWS were reviewed by non-prot agency nurses using the Rochester Health Status Survey (RHSS-IV). Results: The cohort consisted of 280 adults with IDD and 38 with PWS. The mean age of the PWS cohort was 37. Having PWS was signicantly related to overweight and obese status, a higher IQ level, and less optimal health status. The most common organ system disorders (OSD) were nutritional (86%), psychiatric (79%), gastrointestinal (78%), skin (75%), pulmonary (51%), musculoskeletal (46%) and endocrine (43%). Initial regression results osteoporosis, scoliosis and depression are signicantly more likely for people with PWS. Diets and exercise were prescribed for the majority of people with PWS. Conclusions: OSDs in people with PWS differ in people with and without PWS. Treatment guidelines specic to people with PWS are needed to keep this vulnerable population healthy as their longevity increases.

Symposium: Access to health services Factors inuencing women with intellectual disabilities participating in breast screening D. Willis (d.willis@abertay.ac.uk)* *University of Abertay Dundee, Dundee, Scotland Aim: Participation in the NHS breast cancer screening programme (NHSBCSP) is generally poor in women with intellectual disability (WWID). This aim of this paper is to identify factors throughout a womans journey starting from the risk factors of breast cancer to having a mammogram to discern why WWID may not present for breast screening. Method: Data collection involved interviews with 12 WWID, 13 carers (3 family-carers, 10 paid-carers) and 10 allied-professionals and periods of focused observation. Results: The views of the participants are represented in a heuristic model which sets out to identify factors along a womans breast screening experience as to what might deter her from attending mammography. Conclusions: Although there is equality in access in breast cancer screening for WWID there is inequality in service delivery. To compound this, WWID in the UK are supported by social carers who have poorly-dened roles whilst allied-professionals have clearer roles but have to work within the boundary of that role. Additionally, not all health practitioners have experience in working with WWID. This means that the support in terms of preparing WWID is unequal. These factors have an incremental effect on the womans decision to participate in breast screening. Cultivating understanding of health issues: An evaluation of eight workshops for generic healthcare professionals S. Read (s.c.read@nur.keele.ac.uk)* *Keele University, Staffordshire, UK Aim: Going into hospital can be a frightening experience. Investigative tests and procedures can feel invasive, uncomfortable, and sometimes painful, but are an indicative part of the healthcare process of assessment, diagnosis and treatment. Fears and anxieties may be compounded when the patient has an intellectual disability (ID). The West Midlands Strategic Health Authority funded the development of a bespoke health Toolkit in North Staffordshire, UK, and eight workshops for generic health care. This paper provides the rationale for the project, describes the workshop content, and identies the process of pre- and post-workshop evaluation. Method: Pre- and post-workshop questionnaires were distributed (N = 157) and a pictorial qualitative feedback form were used to elicit participant feedback. Results: Analysis of questionnaires and feedback forms showed signicant improvement in participants scores after they had attended the workshop, particularly around new knowledge about ID, raised awareness of services available, and an increased understanding of skills required. Conclusions: Health care for people with ID remains challenging. A lack of understanding about ID and inadequate education for generic healthcare professionals are contributory factors. Resources can reinforce best practice and offer a cost effective, exible and useful way to support best practice initiatives. Toolkits for Better Health: Supporting the health needs of people with intellectual disabilities S. Read (s.c.read@nur.keele.ac.uk)* *Keele University, Staffordshire, UK Aim: People with intellectual disabilities (ID) remain a disadvantaged and marginalised group in the UK. Mencap (a UK national charity) estimates there are 1.5 million people with ID in the UK. These individuals often have worse health than other members of the population yet experience more difculty accessing appropriate healthcare. This paper introduces the concept of Toolkits for Better Health as a way of developing knowledge, skills and understanding within generic healthcare professionals about people with ID. Method: Two Toolkits (sets of tools designed especially for a specic type of work; or a collection of information resources or advice for a specic area or activity) were developed collaboratively and funded by the Strategic Health Authority and the Department of Health, respectively. Results: The adult Toolkit has 24 components to support caring in hospital. The childrens Toolkit has 26 components to support palliative care professionals providing end of life care. The rationale for the project, how the Toolkits were developed, an introduction to the Toolkits and their potential from an educational perspective, will be provided. Conclusions: Toolkits should t the purpose, be collaboratively developed, and be accessible, portable, exible and cost effective, in order for professionals to maximise their potential. Symposium: Measuring dementia Instruments for the early detection of dementia
Aging and Lifespan
E. Zeilinger (elisabeth.zeilinger@univie.ac.at)* & G. Weber *Faculty of Psychology, University of Vienna, Austria Aim: Early detection of dementia in persons with intellectual disabilities (ID) is often hard to accomplish, but nonetheless important for early interventions. Existing screening instruments differ in various features, which complicates the choice of an instrument that ts the intended purpose best. In this study, we wanted to nd, describe and evaluate instruments for the early detection of dementia in persons with ID systematically, to allow a direct comparison of existing tools. Method: A systematic literature search in ve English-language databases was conducted. Relevant studies were identied and chosen using xed inclusion criteria. All instruments found were coded with a newly-designed criteria catalogue. Results: The literature search yielded 3036 results for persons with ID. Additionally, a second search yielded 1587 results for persons with trisomy 21. First results concerning found instruments will be presented. Conclusions: A systematic classication and description of instruments for the early detection of dementia should facilitate the choice of an instrument for a specic purpose. This should lead to a better recognition of early signs of dementia in persons with ID. A prospective fourteen-year longitudinal follow-up of dementia in persons with Down syndrome M. McCarron (mccarrm@tcd.ie)*, E. Reilly, N. Mulyran & P. McCallion *Daughters of Charity Service, Dublin, Ireland Aim: To examine dementia characteristics, age on onset and associated clinical characteristics in 77 persons with Down syndrome. Method: Seventy-seven people with Down syndrome aged 35 years and over were followed longitudinally. The diagnosis of dementia was based on the modied ICD 10 Criteria. A combination of objective and informant-based testing informed the diagnosis. Cognitive tests included the Test for Severe Impairment and the Down Syndrome Mental Status Examination. Adaptive behaviour was measured using the Daily Living Skills Questionnaire. The Dementia Questionnaire for Mentally Retarded Persons was later added to the test battery and data is available for a 5 year follow up with this instrument. Results: Over the 14 years period 67 (87%) persons developed dementia with a mean age of dementia diagnosis of 55.1 years (SD = 7.2). Persons with dementia in the sample were signicantly older than persons without dementia. The presence of dementia was also associated with epilepsy, depression and sensory impairments. Conclusions: High and earlier onset of dementia among persons with DS was conrmed and further data provided help in understanding the relationship between dementia, epilepsy, depression and sensory impairments. Association of plasma amyloid beta peptide and anti-amyloid antibodies with risk of dementia in individuals with Down syndrome A. Coppus (tonniecoppus@planet.nl)*, M. Berger, P. Szabo, N. Relkin, A. Janssens, C. van Duijn & M.Weksler *Department of Epidemiology, Erasmus University Medical Center, Rotterdam, The Netherlands Aim: The nearly universal presence of Alzheimer disease neuropathology in adults with Down syndrome has been attributed to the triplication and over-expression of the gene for APP on chromosome 21. In this study, we examined the relationship between plasma A and anti-A antibody levels and dementia risk in individuals with Down syndrome. Method: In a longitudinal study of 405 individuals with Down syndrome, plasma levels of A40/ 42 were measured. Anti-amyloid antibody levels were examined in a subset of 178 individuals. Association of plasma A or antiamyloid antibody levels with dementia risk was assessed using adjusted Cox proportional hazards models. Results: Elevated levels of A40/42 were associated with more than twice the risk of dementia during followup (mean 4.5 years). There were no signicant differences in the mean concentrations of antibodies between subjects with dementia and those who remained dementia-free. However, levels of anti-bril antibody were directly associated with risk of dementia (Hazard Ratio 2.45 (95% CI = 1.15.3). Conclusions: In individuals with Down syndrome, higher levels of plasma A40 and A42 were associated with increased risk of dementia. Adjusted risk of dementia was increased in subjects with higher levels of anti-bril antibodies.

Symposium: Health and risk factors Behavioural health of older adults with an ID: Choice or compliance? M. McCarron (mccarrm@tcd.ie)*, E. Burke, E. McGlinchey, J. Swinburne & P. McCallion *Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDSTILDA), Trinity Colleg, Dublin Aim: To provide a baseline picture of the lifestyles and behavioural habits of older adults with an intellectual disability in Ireland. Method: The rst wave of the Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing (IDS-TILDA) included data on a series of questions on smoking, alcohol consumption, nutritional health and physical activity for a representative sample of 753 participants with intellectual disability aged 40 and over randomly selected from the National Intellectual Disability Database. Results: The prevalence of smoking and alcohol consumption were found to be low among this cohort compared to age-matched cohorts of the general population. Levels of physical activity were also low across all ID levels and decreased with age. Self-reports of a healthy diet and healthy behaviours were frequent but levels of obesity were high. Conclusions: Two important determinants for healthy ageing are diet and physical activity. While self-rating of health behaviours was generally positive, high measured levels of obesity and reports of low levels of physical activity highlight the need for increased efforts to include people with an ID in health promotion activities. Prevalence of obesity and its risk factors among adults with intellectual disabilities K. Hsieh (hsieh@uic.edu)* & J. Rimmer *University of Illinois at Chicag, US Aim: The aim of this study was to examine the prevalence of obesity and its risk factors in adults with intellectual disabilities. Method: A cross-sectional design was conducted using baseline data (N = 1603) from the national Longitudinal Health and Intellectual Disabilities Study. A hierarchical multiple logistic regression was employed. Independent variables included individual level factors (e.g., demographics, mobility etc), health behaviors (physical activity, dietary habits, smoking), environmental factors (living arrangement and region), and psycho-social factors (life events and social participation). Results: The overall prevalence of obesity was 38.5%. Women (OR = 1.49, 95% CI, 1.161.93) adults with Down syndrome (OR = 2.77, 95% CI, 2.043.77), who took weight-gain causing medications (OR = 1.67, 95% CI, 1.272.18), watched TV more often (OR = 1.07, 95% CI, 1.011.14), drank soda more often (OR = 1.19, 95% CI, 1.011.41), or experienced life events in the past year (OR = 1.33, 95% CI, 1.021.73) were more likely to be obese. Having cerebral palsy (OR = 0.53, 95% CI, 0.330.83) was inversely related to obesity. Conclusions: Obesity is related to modiable health behaviors and psycho-social factors. Strategies for health promotion to reduce body weight and recommendations for future research will be discussed. Cognitive change in adults with intellectual disability with/without Down syndrome compared to typical development peers:Two possible trajectories H. Lifshitz-Vahav (hefziba@013net.net)* & E.Vakil *Special Education Department, School of Education, Bar Ilan University, Israel Aim: This study tests two approaches to cognitive change in adults with intellectual disability (ID) as they age: The Accelerated Trajectory (AT) proposes that adults with ID experience an accelerated decline due to their lower cognitive reserve. The Same Trajectory (ST) approach suggests that their cognitive change resembles that of the general population. Our goal was to examine cognitive trajectories of adults (3039; 4049; 5059; 60+) with ID (IQ = 5070), with/without Down Syndrome (DS), versus Israeli typical developing (TD) chronologically-matched peers. Method: Participants in the study were 240 adults with ID with/without DS (120 participants with TD were matched to participants with ID based on chronological age). Crystallized and uid intelligence, as well as working and declarative memory were examined. Results: Tests of crystallized intelligence remained stable until age 55 in the ID and TD populations and declined thereafter. Matrix reasoning exhibits a small increase across the four age cohorts. Working memory declined from 4049, and declarative memory remained stable. Conclusions: The theoretical contribution of the study is determining whether the AT or ST approach applies to the population with ID relative to peers with TD. This knowledge has implications on developing suitable programs for adults and elderly with ID.
Aging and Lifespan
Symposium: Community participation in retirement I thought it was going to be a lot harder: Community mentors supporting social inclusion N. Wilson (nathan.wilson@sydney.edu.au)*, C. Bigby, R. J. Stancliffe, S. Balandin & D. Craig *The University of Sydney, Australia Aim: Older people with intellectual disability want to pursue an active and meaningful retirement. We successfully tested a mentoring model. Members of mainstream community or volunteer groups were trained to mentor a person with intellectual disability to participate in the group. The aim of this study was to explore the mentoring experience and use these insights to further rene our mentoring model. Method: Semi-structured interviews with 19 mentors were recorded, transcribed, and analysed using the constant comparative method of grounded theory. Results: Mentors were able to foster social inclusion and participation in the group, but recognised that this was largely due to teamwork between the person with intellectual disability, other group members, and the training and support offered. Over time, mentors and other group members overcame their unsureness and came to know the person with intellectual disability. The ability of the person with intellectual disability to t into the group dynamic, together with intrinsic patience and empathy from the mentor, mutually fostered social inclusion, provided there was graded support from trained disability service staff. Conclusions: Formal mentoring models that combine training with support can enhance the social inclusion of older people with intellectual disability as they transition to retirement. Active mentoring: A person-centred retirement support model C. Bigby (C.Bigby@latrobe.edu.au)*, R. J. Stancliffe, S. Balandin, N. J. Wilson & D. Craig *La Trobe University, Australia Aim: Older people with intellectual disability face signicant barriers to retirement. This study drew on Active Support and Co-worker training to develop and trial an Active Mentoring Model aimed at increasing the capacity of community groups to include older people with intellectual disability. Method: Twenty-seven older people were supported to join a community group based on their interests. A conceptual model of the program with its components, skills, and the resources required was developed from the eld notes and time logs kept by the researcher/ case manager who supported the 27 participants. Results: Components included: selling retirement, laying the groundwork, and the ve stages of constructing the reality; planning, locating, mapping a new routine, recruiting mentors, and ongoing support. This model may also be relevant to a wider range of community groups and younger people with intellectual disability. Conclusions: Ongoing longer-term issues for the viability of this model include developing a key role for a retirement case manager. Active Mentoring is one model that can effectively support a person-centred retirement of older people with intellectual disability. Building participation : A socially connected retirement for people with intellectual disability D. Craig (djcraig@students.latrobe.edu.au)* & C. Bigby *La Trobe University, Australia Aim: This study investigated the processes and support needed to enable people with intellectual disability who had attended segregated day programs for most of their lives to participate in mainstream community groups. Method: Five participants over 48 years of age with intellectual disability were supported to attend a non-disability-specic group in the local community. Group members were invited to be mentors. Data were collected through participant observation over a six- to ten- month period, and interviews with those involved in the life of each participant. A critical realist theoretical framework was used to analyze the data and identify the mechanisms involved in the processes of inclusion. Results: Participation presented dilemmas for community groups, and a complex interaction between group purpose, leadership and stated mission determined the extent to which a supportive environment developed. Factors conducive to the formation of relationships between the participant with intellectual disability and other group members, their sense of achievement, and the long term sustainability of participation included the individuals preparedness for the activity, the opportunity to be meaningfully engaged in an activity, and perceived reciprocity. Conclusions: Early identication of these factors and planning for them will enhance the likelihood of positive outcomes.

Symposium: Experiences of health and aging Communication strategies to support the inclusion in research of people with ID and dementia: the handbag approach K. Watchman (K.Watchman@ed.ac.uk)* *Lecturer in Health and Social Care, University of Edinburgh Aim: To maintain communication with participants with intellectual disabilities (ID) and dementia during longitudinal PhD research. Method: Adapted narrative research took account of each participant becoming increasingly non-verbal. The session presents communication strategies used to enable inclusion in research and the extent to which each was successful: verbal enabling narratives; nonverbal touch, senses and meaningful activities for the individual, including handbags; nonverbal pictorial. Results: Findings showed the underestimation by carers of the persons ability to engage in non-verbal communication as dementia progressed. Inclusion in research is not only possible for people with ID and dementia, it is essential to hear what people want and need, rather than relying on carer perceptions or making assumptions about what we think is in a persons best interest. Conclusions: The wider PhD research calls for changes in how we carry out research with groups who have ID and cognitive impairment. The examples given emphasise the need for an individual approach to be taken in communication methods to enable inclusion in research. This is also appropriate to support the inclusion of people in the general population who are in the later stages of dementia and become increasingly nonverbal. Women with intellectual disabilities views about breast screening D. Willis (d.willis@abertay.ac.uk)* *Division of Nursing and Counselling, Dundee, Scotland, UK Aim: Cancer is an age related disease and with greater longevity many more women with intellectual disabilities (WWID) are becoming cancer vulnerable and eligible to participate in the NHS breast cancer screening programme (NHSBCSP). The NHSBCSP is a preventive programme used to detect early signs of breast cancer and is open to all women over fty in Scotland. Participation in the programme is lower in WWID than the general population and little is known about what inuences them to participate in the NHSBCSP. This study explores the womens views about participation in the NHSBCSP. Method: Ten one-to-one interviews and 3 observations were undertaken with WWID. Results: The views of the women were represented by two overarching themes: My Health explored how the women kept themselves and their breasts healthy, and Breast Screening explored the womens experience of participating in breast screening. Conclusions: Knowledge of breast screening was generally poor although the experience of breast problems heightened understanding. Although the women knew about breast awareness few checked their breast regularly or knew what they were looking for. The experience of WWID of breast cancer screening in this study was negative and often deterred them from returning. Im not ready yet: What people with an intellectual disability say about growing older and retirement E. Burke (mcclion@albany.edu)*, E. Burke, P. McCallion, E. McGlinchey, J. Swinburne & M. McCarron *Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDSTILDA), Trinity College Dublin Aim: To identify the thoughts and ideas of people with intellectual disabilities (ID) about retiring and growing older. Method: Data collected on a larger (n = 753) representative sample in the rst wave of the Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing (IDS-TILDA) included 373 self-reports on a number of ageing perceptions items, including several open-ended questions. Results: The majority (n = 260) viewed themselves as young to middle-aged and 63% felt older people could do most things young people could do. There were also themes raised of frailty, wisdom, and death but understanding and experience of retirement was limited for people with ID. Conclusions: People with ID reported a positive outlook on ageing as well as concerns for the future. It was less clear that there are resources and education to prepare people for the transitions of later life.
Aging and Lifespan
Symposium: Frailty and sarcopenia in an aging population with intellectual disabilities I What is frailty and how can it be conceptualized? K. Rockwood (kenneth.rockwood@dal.ca)* *Department of Medicine, Dalhousie University, Halifax, NS, Canada Aim: Conceptualizations of two approaches to frailty will be presented. Method: Literature review. Results: Broad agreement exists that frailty can be seen as a state of high vulnerability to adverse health outcomes as a consequence of a decreased ability to respond to stress. However, different views exist regarding the content, conceptualization and assessment of frailty. A popular conceptualization called the frailty phenotype was drafted: unintentional weight loss, exhaustion, weakness (poor grip strength), slow walking speed, and low physical activity. The frailty phenotype was found to be predictive of falls, worsening mobility, poor activities of daily living and hospitalization. An alternative approach is the decit accumulation approach: the more health decits (e.g. symptoms, signs, laboratory abnormalities, diseases, disabilities) people accumulate as they age, the more they are at risk for adverse health outcomes. An index can be put together by counting health decits as presented (e.g. in health databases). The principles of decit accumulation and guidelines for drafting a frailty index will be presented, as well as a brief overview of studies performed with the frailty index. Conclusions: The frailty index appears to be more predictive of morbidity and mortality in various populations than the frailty phenotype. Frailty according to cardiovascular health study criteria H. Evenhuis (h.evenhuis@erasmusmc.nl)*, H. Hermans,T. Hilgenkamp, L. Bastiaanse & M. Echteld *Erasmus University Medical Center, Rotterdam, The Netherlands Aim: To present data on the prevalence, distribution and correlates of frailty in older people with intellectual disabilities (ID) diagnosed according to Cardiovascular Health Study (CHS) criteria. Method: Population-based cross-sectional study in 848 persons with borderline to profound ID using formal services, aged 50+ years. All participants underwent an extensive objective health check. Associations of frailty with participant characteristics were investigated with multivariate logistic regression analysis. Results: Prevalence of frailty was 13% (95% condence interval 1115) for the total population: 11% at age 5064 years and 18% 65+ years. Age, Down syndrome, dementia, motor disability and severe ID were signicantly associated with frailty, but only motor disability had a unique association with frailty. In a regression model with these variables, 25% of the variance of frailty was explained. Conclusions: At age 5064 years, the prevalence of frailty is as high as in the 65+ general population (79%), with a further increase after age 65 years. Frailty is only partially explained by motor disability. Questions concerning age of onset of frailty, its validity against negative health outcomes and increase of dependency, as well as its causes and potential preventability or reversibility, are to be answered next. Frailty in elderly with intellectual disabilities J. Schoufour (j.schoufour@erasmusmc.nl)*, M. Echteld & H. M. Evenhuis *Erasmus Medisch Centrum, Rotterdam, The Netherlands Aim: Although there is no strict denition of frailty, it is generally accepted as a state of high vulnerability for adverse health outcomes. Associations between frailty and mortality, dependence and hospitalization have been shown. This study measured the level of frailty in elderly with intellectual disabilities (ID). Variation in gender, age, and level of ID were identied. Method: This research elaborates on a large cross-sectional study, Healthy Aging with ID. It included 1018 elderly (>50) men and women with ID. Frailty was measured using a frailty index with 50 health-related decits. A frailty score between 01 was calculated for each individual. Decits included physical, social and psychological problems. Results: On average a frailty score of 0.28 for women and 0.27 for men was found. Frailty was positively correlated with age. The severity of ID was associated with an increased frailty score. Conclusions: As people with ID get older, the question of additional years spent in good health becomes salient. It was shown that people with ID over 50 years have frailty scores similar to most elderly people over 75 years. Future research is needed to conrm if frail elderly with ID have an increased risk of adverse health outcomes.

Symposium: Frailty and sarcopenia II Frailty, sarcopenia, weight loss: How are these concepts related? M. Echteld (m.echteld@erasmusmc.nl)*, T. Hilgenkamp, L. Bastiaanse, J. Schoufour & H. Evenhuis *Erasmus Medical Center, Department of Intellectual Disability Medicine, Rotterdam, The Netherlands Aim: The dominant conceptualization of frailty is the phenotype criterion, i.e., the simultaneous occurrence of three of the following problems: weight loss, low grip strength, slow walking speed, low physical activity and exhaustion. The frailty index, which is based on the accumulation of multiple health decits, showed superior prediction of future health problems in elderly population without intellectual disability (ID), in comparison with the phenotype conceptualization. Sarcopenia, i.e. loss of muscle mass, strength and performance, is conceptually similar to the frailty phenotype and also predicts adverse future health states. In this presentation, the conceptual overlap of these concepts will be discussed, and the relationships present in the data will be shown. Method: Data are derived from the Healthy Aging and ID study: a large cross-sectional health study on 1050 people >50 y of all levels of ID. Data were collected using objective tests and standard instruments. Results and Conclusions: Preliminary analyses showed that all concepts were related, but only medium amounts of shared variance were found. Further multivariate analyses will be performed.
Aging and Lifespan
Symposium: Multiple topics: Siblings, relationships and poverty Reciprocal sibling relationships over the life course A. Dew (angela.dew@sydney.edu.au)* *Faculty of Health Sciences, The University of Sydney Aim: Sibling relationships are the longest and most durable throughout life. As individuals with a lifelong developmental disability outlive their parents, the sibling relationship assumes greater importance. This study explored the later life relationships between individuals with moderate or severe cerebral palsy aged 40 years and over and their non-disabled siblings. Method: Twenty eight participants (12 individuals with cerebral palsy and 16 of their non-disabled siblings) were interviewed twice using a qualitative, life-course approach. Results: Using constructivist grounded theory, data analysis led to the primary nding of this study: that reciprocity can develop in the relationship between people with moderate or severe cerebral palsy and their non-disabled siblings. Reciprocity may be either instrumental, through the exchange of practical aid and direct services, or symbolic, relating to the mutual trust, regard and respect which people develop towards those with whom they have a long-term relationship. Conclusions: Four variables shared experiences, contact, parental status and role, and support needs formed the basis of a conceptual framework for understanding the development of reciprocity between sibling participants. The framework will be presented using quotes from participants, and its usefulness to people with cerebral palsy, family members, and service providers will be discussed. Taking over: Transitions in care for two sisters, one with Down syndrome
Sarcopenia in older adults with intellectual disabilities L. Bastiaanse (l.bastiaanse@erasmusmc.nl)*,T. Hilgenkamp, M. Echteld & H. Evenhuis *Erasmus Medical Center, Department of General Practice, Rotterdam Aim: Sarcopenia is a syndrome characterised by generalised loss of muscle mass, strength and performance with a higher risk of adverse outcomes such as physical disability and death. The aim of this study was to determine the prevalence of sarcopenia and to identify its associations in older adults with intellectual disabilities (ID). Method: In 929 older people with ID calf circumference (muscle mass), grip strength (muscle strength) and gait speed (muscle performance) were measured. Sarcopenia was divided into pre-sarcopenia, sarcopenia and severe sarcopenia. Associations between sarcopenia and patient characteristics, mobility, ADL, body mass index and level of vitamin D were investigated. Results: In the study population the prevalences of pre-sarcopenia, sarcopenia and severe sarcopenia were 7,4%, 8.6%, and 5.0%, respectively. In the age group 5064 years, the prevalence of sarcopenia was 12.0%, and in the age group 65 years and over it was 17.0%. People using a walking aid or a wheelchair, people with a low body mass index and people with a low ADL-score (highly dependent) were more likely to become sarcopenic. Conclusions: Sarcopenia in people with ID aged 50 years and over is as common as in people over the age of 65 in the general population.
J. Curran (curranjm@oneonta.edu)* *SUNY College at Oneonta, NY, US Aim: The goal of this study was to describe and explore the lived experience of my sisters transition from our mothers home to mine, and our mutual transition to caretaker for each other. Method: This study applies an autoethnographic methodology based on hermeneutic phenomenology and grounded in symbolic interactionism. Critical, analytic moments derived from personal diaries, holiday letters to family and friends, summaries of conversations, and interviews completed over a fouryear period, served as the foundation for analysis. Results: Some analytic moments include moving in, engagement scenario, out to dinner with friends, riding in the car, mama-baby and tea time. These moments are often repeated exchanges that began as simple behaviours or converstion overtures and then became scripted means of interactions that reinforced the roles we took on. Conclusions: Role transitions apply to both sisters. Behaviours and events that contributed to a good transition were using rituals, play, identifying each sisters strengths and abilities, and setting boundaries. The leader initiating transition was consistently the sister with Down syndrome. The income status and poverty trend of community-dwelling older adults with intellectual disabilities: Case of Taipei City K.Y. (L.) Wang (Kuoyuwang194@gmail.com)* *National Chung Cheng University, Department of Social Welfare, Taiwan, China Aim: The purpose of this study was the analysis of the income status of adults with intellectual disabilities (ID) living in the community. Nearly 92% of adults with ID live at home with their families in Taiwan and there had not been an analysis of their income level and economic support. Registration data from the Taipei Metropolitan area was used to calculate the poverty rate for those families with adults with ID who lived at home and to examine the long-term trend of their chronic poverty status. Method: Secondary data analysis was used to calculate the poverty rate. The data set consisted of low-income household registration data from which it was possible to obtain further data regarding families who were eligible as low-income families who had members of their family with an ID. Logistic regression analysis was used. Results and Conclusions: The results showed that families with an adult member with ID were poorer than those without a member with ID.

Symposium: Exploring multiple perspectives on grief and bereavement in intellectual disabilities I Dening the nature of grief and bereavement in intellectual disability S. Guerin (Suzanne.Guerin@ucd.ie)* *University College Dublin Centre for Disability Studies Aim: The study of grief and bereavement in the typical population is marked by multiple terms and concepts, including loss, grief, and grieving. A signicant body of research has considered the nature of these experiences. The aims of this paper are to reect on these concepts as they apply to intellectual disability (ID) and to provide an overview of the research on the nature of grief and bereavement in ID. Method: A literature search was conducted to identify papers published in the last ve years on the topic of bereavement and ID. Search terms such as death, dying, grief, grieving, loss and bereavement were combined with intellectual disability and learning disability. Results: A review of the papers identied the key terms used, whether the papers included an explicit denition of these key concepts, and a description of any bereavement reactions. Conclusion: This paper will explore the implications of consistency and variation in concepts associated with bereavement among people with ID. Developing a self-report measure of complicated grief in people with intellectual disability L. OKeeffe (Lynsey.okeeffe@ucd.ie)*, P. Dodd, S. Guerin, K. Lockhart & J. McEvoy *University College Dublin Centre for Disability Studies Aim: The Complicated Grief Questionnaire-Intellectual Disability (Dodd et al., 2008) relies on proxy reporting; however, due to the subjective nature of grief it is important that these experiences are accessed directly. This research involved adapting the CGQ-ID for self-report use. Methods: Two pilot studies were carried out. The rst involved two focus groups with ve men and ve women with mild to moderate ID in order to investigate their understanding of feelings and concepts related to loss. Using vignettes, certain concepts were highlighted and the level of understanding of these concepts was ascertained. The data were used to develop a draft of the self-report version of the CGQ-ID, for use in the second pilot study. Here, the questionnaire was administered in a structured interview format to six adults who had experienced a parental bereavement. Through this phase it became clear that this questionnaire was beyond the level of understanding of the participants. Subsequently the questionnaire was further re-worded and re-phrased. Pictorial aids and a demographic information sheet for the carer to complete were also added. Results and Conclusions: The nal self-report version of the CGQ-ID has now been used with 12 participants. Future research will involve investigating its psychometric properties. A Study of complicated grief in people with intellectual disability P. Dodd (phildodd@eircom.net)*, K. Lockhart, L. OKeeffe, J. McEvoy & S. Guerin *University College Dublin Centre for Disability Studies Aim: Previous studies have shown that there is a signicant association between a parental bereavement and the development of aberrant behaviours and psychopathology in people with intellectual disabilities (Hollins & Esterhuyzen, 1997). However little work has been done to accurately describe specic symptoms of grief, specically symptoms of complicated grief in this population. The aim of the present study is to examine the prevalence of symptoms of complicated grief and to explore the relationships between complicated grief and bereavement experience, and specic individual characteristics. Method: A Bereavement History Questionnaire and the self- and proxy-report versions of the Complicated Grief Questionnaire-Intellectual Disability (CGQ-ID) were administered to a group of people with mild or moderate intellectual disabilities who had experienced a parental bereavement within the previous two years of the research interview. Data collection is on-going across ve disability service providers. Results: The data collected to date highlight wide variation in the presence or absence of specic symptoms, though separation distress is a key feature of the participants reactions. Conclusions: These ndings will be discussed in relation to the nature of complicated grief in this group and the implications for service provision.
Aging and Lifespan
Symposium: Exploring multiple perspectives on grief and bereavement in intellectual disabilities II Families perspectives on grief and bereavement in adults with intellectual disabilities T. Burke (Tom.Burke@ucdconnect.ie)*, L. OKeeffe, P. Dodd, K. Lockhart, J. McEvoy & S. Guerin *University College Dublin Aim: It is widely accepted that people with an Intellectual Disability (ID) experience feelings of grief and sadness following bereavement (Dodd, et al., 2005), which can have implications for staff supporting individuals with ID (Dodd, et al., 2005). While the body of research in this area is growing, limited research exists on the views and experiences of family carers. This group are particularly important, as it is more than likely that they too will have experienced the bereavement. The aim of this research is to address this gap in the literature and explore the views of family carers both on the impact of bereavement on people with ID and the challenge of supporting people with ID. Method: As part of a larger project on bereavement in ID, family carers of adults with mild and moderate ID living in the home will be invited to take part in a semi-structured interview. The proxy report of the Complicated Grief Questionnaire Intellectual Disability (CGQ-ID) will be administered, while qualitative questions will explore their experience of supporting their family member with ID. Results and Conclusions: The study will consider the implications of family members experiences for supporting people with ID following a bereavement. Empowering staff members to support service users with intellectual disabilities who have been bereaved J. McEvoy (John.McEvoy@dkit.ie)* & S. Guerin *Centre for Disability Studie, Dublin, Ireland Aim: That people with intellectual disabilities grieve is no longer in doubt. Rather the challenge is to support those who play a major role in supporting service users through grief and bereavement. The aim of this study was to determine staff training and support needs when dealing with bereaved service users. Method: An action research model was adopted involving three phases of work: 1) focus groups determined staff experiences of supporting service users through bereavement and perceptions of their own training needs; 2) the second phase of the study involved working with a small group of staff on the development and design of a pilot training package for staff within the agency; this was followed by 3) an evaluation of the training package. Results: Despite initially reporting a lack of condence and uncertainty, particularly around operational procedures following bereavement, 11 staff participated in developing a modular training course, which was well received by course participants (n = 17). Conclusions: Service agencies need to be more proactive in supporting staff and in developing policy and guidelines in conjunction with practical training initiatives, coupled with greater awareness of the emotional impact of loss on staff and service users within specialist services. Breaking bad news to people with intellectual disabilities I.Tuffrey-Wijne (ituffrey@sgul.ac.uk)*, N. Giatras, G. Butler & A. Cresswell *St Georges University of London, UK Aim: Current models for breaking bad news are inadequate in meeting the needs of people with intellectual disabilities (ID). This study explored the experiences and preferences of people with ID, families and professionals to identify the factors that affect breaking bad news to people with ID. Methods: Individual interviews and focus groups were conducted with 109 participants across England. Participants included people with ID, family carers, general nurses, physicians and ID professionals. Results: Results revealted that (a) people with ID have wide-ranging views about whether and how they want to be told bad news; (b) professionals lack condence in communicating bad news to people with ID; (c) many family carers want to protect people with ID from bad news; and (d) bad news should be given in chunks, depending on the persons abilities and needs. Most people with ID make sense of bad news within their social context, rather than in a doctors ofce. Conclusion: Rather than breaking bad news, the key is to help someone understand and cope with a changing situation. This is a gradual process. A new model for breaking bad news to people with ID has been produced and will be presented as a poster.

Symposium: Aging in Ireland Physical health and multiple morbidity in Irish people with an intellectual disability as they age M. McCarron (mccarm@tcd.ie)*, J. Swinburne, E. Burke, E. McGlinchey & P. McCallion *Trinity College, Dublin Aim: There are concerns in Ireland that for aging people with intellectual disability (ID), mortality is higher and health problems are greater than for the general population. The Irish Longitudinal Study of Ageing (TILDA) has been extended with an intellectual disability supplement (IDS-TILDA) to investigate these concerns. This paper aims to prole multiple physical health morbidity in people with an ID as they age in Ireland. Method: A representative 753 persons aged 40 plus with ID drawn randomly from the National ID database (NIDD) have responded (or carers have responded on their behalf) to questionnaires addressing demographics, health, health utilization, medication usage, and ADL/IADLs. The relationship between multiple morbidity, age, and level of ID was investigated. Results: The ageing of people with ID has been similar in many respects to that of the general population but there are important differences in physical health, incidence of dementia, epilepsy, diabetes, heart disease and cancers. Multiple morbidity appeared associated with age, level of ID and poor self-rating of rate health. Conclusions: Awareness of multiple morbidity is an important consideration in the development of health services for people with ID as they age. An exploration of the resilience of ageing family caregivers of older people with intellectual disabilities living at home L.Taggart (l.taggart@ulster.ac.uk)* *University of Ulster, Northern Ireland Aim: As the majority of older adults with an intellectual disability (ID) remaing living in the family home, this imposes challenges on family carers, who are also ageing and have support needs of their own, and on service provision. This study explored the resilience of ageing family carers caring for an older person with an ID living at home. Method: A qualitative approach was employed. Eighteen one-to-one interviews were undertaken with ageing carers. The qualitative data was analysed using thematic content analysis. Results: Findings revealed carers physical and mental health and the supports available to them impacted on their resilience to the continuity of their relatives care within the home. Caring had positive and negative health and social outcomes for older carers, namely satisfactions and rewards, stress, diminished physical health and social networks. Conclusions: Services will need to evolve focusing on providing information on future planning, offering education and training, as well as emotional and instrumental support to families in order to build upon their existing strengths and to empower family carers within their own social context as a form of prevention, maintenance and also crisis management. Growing older with intellectual disability R. McConkey (r.mcconkey@ulster.ac.uk)*, M.Truesdale Kennedy, M. McCarron & P. McCallion *University of Ulster, Northern Ireland Aim: People with intellectual disabilities are not only living longer but most now age within community-based services. In times of austerity, the identication of priorities is crucial. Method: Around 40 delegates from a range of disciplines and organisations on the island of Ireland were invited to round table discussions to analyse the implications for future policy and practice of data emerging from ongoing research studies (McCarron et al, 2011; Taggart et al., 2011). A striking consensus emerged as to ve main priority areas and within each, two low-cost actions were identied. Results: Promoting health and wellbeing as people age was a major priority with actions focussed on health screening and individual planning. New styles of services were required, notably in day opportunities and through individualised payments. Greater integration with mainstream older persons services was advocated, especially in supported accommodation and for specialised services such as with dementia. Augmented family support services will be required including short breaks and facilitating succession planning within families. Policy imperatives were around improved training and local area planning. Conclusions: These proposals provide an agenda for future research and evaluation studies, including the cost-effectiveness of realising the proposed actions. Symposium: Researching end of life
Aging and Lifespan
Experiences of community living staff assisting people with intellectual disability to know about dying as the end of life approaches M. Wiese (michele.wiese@sydney.edu.au)*, R. J. Stancliffe, A. Dew, G. Howarth & S. Balandin *University of Sydney, Autralia Aim: The aim of this study was to explore community living staff experiences of engaging people with intellectual disability to know about dying and death. Method: Guided by grounded theory methodology, focus groups and individual interviews were conducted with a range of staff, including those who had not yet experienced a client death, those who had experienced sudden client deaths, and those who had experienced client deaths pre-dated by extensive end-of-life care. Results: The presentation will report on both the staff in-principle beliefs and in-practice engagement with clients to know about dying and death. The inuence of staff experience, client capacity to understand, and the opportunities for engagement will be discussed. These results will be presented against a landscape demonstrating that people with intellectual disability have been, and will continue to be, exposed to death. Conclusions: People with intellectual disability have a right to know about dying and death. Recommendations will be made about how we can ensure that community living staff are well equipped to assist people with intellectual disability to exercise this right. Disenfranchised grief: A parent with an intellectual disability shares her story S. Read (s.c.read@nur.keele.ac.uk)* *Keele University, Staffordshire, UK Aim: The death of a child is, for many people, often perceived as the ultimate loss. For a young woman with an intellectual disability, coming to terms with the death of her son following a termination was a difcult process, as she was never encouraged nor helped to mourn his death. Twelve years following his death she asked to speak with a bereavement counsellor. Method: This single case study introduces the lived experience of the bereaved parent, explores the challenges encountered along the way, and describes the healing process in which the bereaved parent came to terms with her loss. Results: Mourning rituals can help the bereaved to accommodate loss, and sometimes people with an ID need specic help and support with this. In this case, it was 12 years after her son had died that the parent was sensitively supported to constructively explore the impact and meaning of the loss of her son. Conclusions: Telling, writing and sharing stories can be cathartic, and in this paper a woman proudly shares her story and experiences of loss in the hope that others can learn from it. Life story work played a key role in supporting this persons grief work. Dening premature death in people with intellectual disabilities P. Heslop (pauline.heslop@bristol.ac.uk)* & A. M. Marriott *Norah Fry Research Centre, University of Bristol, UK Aim: A Condential Inquiry (CI) into the deaths of people with learning disabilities in the U.K. aims to improve the health and wellbeing of people with intellectual disabilities. Method: Following the notication of the death of a person with intellectual disabilities who meets the CI criteria, a full investigation is undertaken adopting a root cause analysis methodology. All cases are then reviewed independently by a multi-disciplinary Overview Panel. Results: There are a number of ways in which what constitutes a premature death might be determined. A central aspect of the CI work has been to establish which is the most appropriate and robust way of dening premature death in this context. The approach taken is to consider the sequence of events leading to death. Therefore a death is considered premature if, without a specic event that formed part of the pathway that led to death, it was probable (i.e. more likely than not) that the person would have continued to live for at least 1 more year. Conclusions: This paper will briey review the different ways to determine if a death is premature and will present a few vignettes to illustrate the method selected by the CI Team.

Symposium: Depression, anxiety and sleep problems in aging populations with intellectual disabilities Depression, anxiety and sleep in aging populations with intellectual disabillities: Results of the HA-ID and IDS-TILDA studies M. van Schijndel-Speet (h.evenhuis@erasmusmc.nl)* *Intellectual Disability Medicine, Erasmus University Medical Center Rotterdam, The Netherlands Aim: This symposium will provide insight into outcomes of large-scale epidemiological research into mental health and sleep quality of Dutch and Irish older adults with intellectual disabilities. Method: In a cross-sectional design, depression, anxiety and sleep patterns were investigated in two representative populations of 1050 Dutch clients of formal ID services (50+ years) (Healthy Ageing and Intellectual Disability Study, HA-ID) and 753 Irish persons (40+ years) on the National Intellectual Disability Database (Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing, IDS-TILDA). Diagnostic measures were different across the studies. Results and Conclusions: Prevalences of depression and anxiety, association of depressive symptoms with reported sleep patterns, occurrence and burden of life events and their association with depression and anxiety will be presented, as well as outcomes of sleep-activity patterns measured with actiwatches. Prevalence of depression and anxiety disorders in older people (50+ years) with intellectual disabilities H. Hermans (h.hermans.1@erasmusmc.nl)*, A. Beekman & H. Evenhuis *Intellectual Disability Medicine, Department of General Practice, Erasmus Univerisity Medical Center, Rotterdam, The Netherlands; Aim: Our aim was to study the prevalence and associated factors of depression and anxiety in older (50+ years) adults with borderline to profound intellectual disabilities (ID). Method: Increased depression and anxiety symptoms were assessed in 990 participants with self-report or informant-report instruments. Participants with a score above one or more of the cut-off scores of these instruments (n = 199) and a random sample with scores below all cut-off scores (n = 91) were assessed with the Psychiatric Assessment Schedule for Adults with a Developmental Disability (PAS-ADD) Interview. Results: Increased depression symptoms were prevalent in 16.8% (95% CI: 14.419.1) and associated with increased anxiety symptoms, number of life events, limited Instrumental Activities of Daily Living (IADL)-abilities, and chronic diseases. Major depression was prevalent in 7.6% (95%CI: 5.211.0) and associated with limited IADLabilities and chronic diseases. Increased anxiety symptoms were prevalent in 16.3% (95% CI: 14.018.6) and associated with mild ID, increased depression symptoms, and number of social contacts. Anxiety disorders were prevalent in 4.4% (95%CI: 2.67.0) and showed no signicant associations. Conclusions: The prevalence of major depression is higher, and anxiety disorders is lower than found in the Dutch general older population. Life events in older (50+ years) adults with intellectual disabilities H. Hermans (h.hermans.1@erasmusmc.nl)* & H. Evenhuis *Intellectual Disability Medicine, Department of General Practice, Erasmus Univerisity Medical Center, Rotterdam, The Netherlands, Aim: Our aim was to study the occurrence of life events in adults with mild to profound intellectual disabilities (ID) aged 50+ years and their association with depression and anxiety. Method: Occurrence and burden-of-life events were assessed with a 28-item checklist, completed by professional caregivers. Depression and anxiety were assessed with selfreport and informant-report screening instruments (n = 988) and with a psychiatric interview (n = 286). Associations with depression and anxiety were studied for life events in general and for specic life events. Results: 97% of the participants had been exposed to multiple life events during the preceding year and 72% had been exposed to one or more negative life events. The frequency was signicantly higher in participants aged 65 years or over, in participants with mild or moderate ID, and in participants with depression or anxiety. Minor physical illness and problems with a fellow resident were signicantly associated with depression and anxiety; decline or loss of mobility and loss of leisure-time activities with depression; and change at work or from work with anxiety. Conclusions: Given the high prevalence of life events and their association with depression and anxiety, life events should be better monitored and, if possible, prevented.
Aging and Lifespan
Symposium: Depression, anxiety and sleep problems in aging populations with intellectual disabilities (continued) Sleep problems in older people with ID and in general population: A comparison study using actigraphy E. van Dijk (m.echteld@erasmusmc.nl)*, H. Evenhuis & M. A. Echteld *Erasmus Medical Center, Department of Intellectual Disability Medicine, Rotterdam, The Netherlands Aim: Ageing is associated with increased sleep problems, but it is not known whether older people with intellectual disabilities (ID) have more sleep problems than older people without ID. In this study older people with ID will be compared with an age-matched group of people without ID with regard to sleep problems. Method: In the healthy aging study (HAID), sleep problems (sleep efciency and other parameters) were measured using actigraphy: 552 people with ID of age 50 years and over wore the Actiwatch, a wrist-worn motion based device for the measurement of sleep and sleep problems. Data were compared to data of >1000 age matched individuals from the general population collected in a large populationbased study. Results: Comparisons are expected to be completed in January 2012. Conclusions: Insight into the prevalence of sleep problems in comparison with the general population will aid the development of care policy regarding sleep problems in older people with ID.
Depressive symptomatology and sleep patterns in an older Irish population with ID N. Mulryan (niamh.mulryan@docservice.ie)*, B. Lawlor, P. McCallion & M. McCarron *IDSTILDA, Trinity College Dublin Aim: To examine the association between sleep patterns and depressive symptom burden in older adults with ID. Method: Data collected in the rst wave of the Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing (IDS-TILDA) included information on mental health diagnoses and self- or proxy-rated mental health status as well as reports of sleep patterns for 753 people with intellectual disability aged 40 and over, randomly selected from the National Intellectual Disability Database. Data was also gathered on use of hypnotics to address sleep concerns. Results: Depressive symptom burden was associated with reported sleep patterns in this national longitudinal study. Conclusions: There appeared to be an association between sleep patterns and depressive symptoms in older adults with an intellectual disability which encourages further examination of parallels with studies for the general population and identication of unique factors in this association for people with an ID.

Symposium: Demographics and services Aging and quality of life: Challenges and opportunities under conditions of ID S. Schaeper (s.schaeper@katho-nrw.de)* & S. Graumann *Germany Aim: Promoted by the UN-CRPD, there is signicant effort being directed to raise the quality of life for people with disabilities. What about the elderly? Even with the same right to participate, they are confronted with double discrimination: living with a livelong disability is mainly seen as a life full of restrictions, and ageing is discredited as a period of suffering and losing autonomy. The research project LeQui aims to show examples of best practice in supporting elderly people with an ID in Germany. Method: The research project, based on interviews with consultants of welfare organizations and an analysis of empirical and conceptual literature, evaluated projects that supported areas of every day life of elderly people with ID. Results: The different steps of the study offer an overview of the challenges as well as the innovative ideas around support and the accompanying risks that need to be met in changing services for elderly people with ID. Conclusions: Social services and health services have to prepare for a future with a growing number of elderly people and society has to ensure the quality of life for this growing number. Therefore, interdisciplinary and international perspectives have to be aligned. Symposium: Death and dying
Aging and Lifespan
Advanced care planning for older people with intellectual disability N. Mckenzie (sharon.brandford@idea.org.nz)* & G. Bellamy *IDEA Services (IHC NZ) Aim: To develop resources for a community disability provider of residential services for people with life-limiting conditions by applying generic research on advanced care planning to specic disability contexts Method: In partnership with the University of Auckland School of Nursing, action-research methods were used to identify individual planning components of advanced care involving consultation with consumers, family and staff. Results: Results from preliminary trial and evaluation of tools will be reported, as will organizational policy and procedures. Conclusions: Recommendations for further research will be made, with emphasis on the value of collaborative action research between providers and academics. Ethical issues for community living staff in end-of-life care of people with intellectual disability M. Wiese (michele.wiese@sydney.edu.au)*, A. Dew, S. Balandin, R. Stancliffe & G. Howarth *University of Sydney, Australia Aim: Increasingly in Australia, elderly people with intellectual disability who are dying receive end-of-life care from staff in community living settings. Care in these settings is typically guided by a social justice ethical framework. The aim of this study was to explore how community living staff offer care in the context of this framework. Method: Guided by grounded theory methodology, this presentation draws upon focus group and individual interview data with community-living care staff. Results: The presentation describes how staff face challenging ethical dilemmas when the predominant social justice framework competes against a range of alternative positions including their own personal past experiences, colleagues with different ethical orientations, and legal requirements; all occurring on a landscape where the nality of death approaches. Conclusions: The presentation concludes with the proposal that competing ethical positions may compromise the quality of end-of-life care offered to people with intellectual disability, and threaten the social justice ethical framework so important to the achievement of equitable care for this potentially marginalized group. Using action research to design bereavement software: Working with people with ID for effective development S. Read (s.c.read@nur.keele.ac.uk)* & P. Corcoran *Keele University, Staffordshire, UK Aim: This paper introduces an research project to produce an innovative, interactive, computerised tool to facilitate the emotional expressions around loss for people with intellectual disabilities (ID). Involving people with ID as co-developers was essential because of the nature of the topic of enquiry. Method: Participatory action research was used by the researcher to work alongside seven people with ID, an advocate and a creative designer, to explore the nature and content of the proposed tool over a six month period. The renement of this software then continued in parallel with the image development. Results: A software tool which enables the user, by combining images sequentially, to tell their own personal story in relation to death and bereavement was developed. It can facilitate storytelling around loss and bereavement, and promote spontaneous expression that can be shared with others. Conclusions: Working alongside adults with ID as co-researchers was a valuable experience and helped to shape the software tool. Involving people with ID within the research process can be difcult because it has not been done enough to be perceived as easy. This tool has the capacity to enable individuals to capture the world of personal experience in a storyboard format.
The demographic change of the adult population with intellectual disabilities in Germany F. Dieckmann (f.dieckmann@katho-nrw.de)* & C. Giovis *Catholic University of Applied Sciences North RhineWestphalia, Muenster Aim: How will the demographic structure of people with intellectual disabilities in Germany change? Using the example of Westphalia-Lippe, a region with 8.3 million inhabitants, it is projected how the age structure will alter until the year 2040. Method: The projection is primarily based on personal data of all recipients of services for disabled people from the regional funding authority (Landschaftsverband) and on educational statistics. Assumptions are founded on the current utilization of support services (status quo-scenario) and age-group specic mortality rates. Results: The percentage of seniors among the adult population with ID will be increasing from 10 % in 2010 to 31 % in 2030. In 2030, every second client in residential institutions will be 60 years or older, and every third in supported living. The number of people is forecast who will need any kind of support during the day after retirement or who will be in need of care when they get older. Conclusions: In cooperation with other social sectors (care for the elderly, health service system) and with the local authorities, service providers have to adjust to the age-related demands to ensure adults with ID a life-long perspective in supported living within the community.

Symposium: Older peoples perceptions of growing older Inuence in everyday life for older people with intellectual disabilities M. Jormfeldt (mia.jormfeldt@hh.se)* *Halmstad University, Sweden Aim: The overall aim is to study ordinary life in group homes for older people with intellectual disabilities from the perspective of residents to identify situations in everyday life where opportunities and obstacles to exert inuence occur, and to investigate in what way this is expressed in the interaction between the resident, co-residents and the support staff. Method: The study has an ethnographic approach with observations, video-recorded meetings and interviews. The participants are residents, 65 years and older, and support staff in three group homes for people with intellectual disabilities in Sweden. The study has been approved by the Research Ethics Committee. In the ongoing analysis of everyday life, activity and constraints are used. The meetings between residents and staff are analyzed by interaction analysis. The theoretical starting-point rests upon theories about power, autonomy and structure. Results and Conclusions: Preliminary ndings show a lot of on-going projects in everyday life of the group home. Some projects were initiated by the residents and others by the support staff. These projects are indicative of both opportunities and difculties for residents to exert inuence over the most basic needs of everyday life. Self-image and interdependence: How older people with intellectual disabilities see themselves J Stanseld (j.stanseld@mmu.ac.uk)*, D. Chadwick, D. Mitchell, S. Caton, M. Chapman & S.Turnbull *Research Institute for Health and Social Change, Manchester Metropolitan University, UK Aim: Extensive research has focussed on people with intellectual disabilities (ID) as they grow older, but little has considered issues from the perspective of people with ID themselves. The aim of this study was to explore with people with ID their personal experiences of their current roles. Method: The study was an exploratory lifestyle investigation employing qualitative semi-structured interviews. Thirteen adults with ID were asked about their personal relationships and social environments. All participants communicated verbally except for one, who used a communication aid. Data were analysed thematically. Results: Two global themes emerged from the data: the concept of interdependence and personal self-image. With regard to self-image, participants were predominantly positive and selfassured. They did not perceive themselves to be disabled, seeing disability as physical or sensory impairment. Interdependence was expressed in terms of changes in family relationships, being helpers as well as being helped by people around them, and the degree to which personal routines were supported or impeded by others. Conclusions: Participants in this study were able to discuss their self-concepts of being valued members of their social environment. Listening to the perceptions of these individuals provides a powerful alternative view to professional perceptions of dependence and need. Intellectual dsability, family & ageing: Evaluating the use of Photovoice for data collection H.Trip (henrietta.trip@otago.ac.nz)* *Centre for Postgraduate Nursing Studies, University of Otago, Christchurch, New Zealand Aim: To evaluate the use of photovoice as a data collection method with people ageing with an intellectual disability, who are living in the context of family. Method: Photovoice is a participatory visual approach that allows participants to use images, usually photographs, to support the conceptualisation of individual perspectives. In this instance, it is used with participants with an intellectual disability who are invited to select a photo or other visual image which depicts ageing for them. Semi-structured interviews are used with people with an intellectual disability and a family member of their choosing, with whom they live. A future stage of this research will invite responses to participant data from health professionals, service providers and funders from the aged care and disability sectors. Results: As a methodology, photovoice provides a unique opportunity to explore the world view of people with an intellectual disability. This paper critically explores the strengths and weaknesses of using photovoice with current participants on the subject of ageing. Conclusions: The use of photovoice as a methodology is deemed to be benecial as it enables greater inclusion of vulnerable populations, and specically, enhances the contribution people with an intellectual disability can make to research. Symposium: Patterns of aging Ageing in Rett syndrome: Longitudinal study
Aging and Lifespan
N. Halbach (nicky.halbach@mumc.nl)*, E. E. J. Smeets, C. Steinbusch, C.T. R. M. Schrander-Stumpel, M. A. Maaskant, D. van Waardenburg & L. M. G. Curfs *Deartment of Clinical Genetics/Governor Kremers Centre, Maastricht University Medical Centre, The Netherlands Aim: Little is known about the ageing process of people with specic syndromes, like Rett syndrome. Good knowledge of the specic healthcare problems in adults with intellectual disabilities and anticipating these problems are important issues for providing support and healthcare for these persons. In 2007 cross-sectional research was performed. However, in order to get a better understanding of the ageing process and mortality in Rett syndrome, we performed a longitudinal study. Method: In association with the Dutch Rett Syndrome Parent Association, 70 postal questionnaires were sent to the participants of our previous research. The questionnaire consisted of general questions related to living conditions, skills, and physical and psychiatric morbidity. Results and Conclusions: In our previous study, adults with Rett syndrome seemed to be reasonably healthy, but high care dependency was conrmed. The general disorder prole was conrmed, considering that kyphosis being more prevalent and there was better communication and autonomic dysfunction in the oldest age group (30+) compared to the younger age groups (<30). In this ongoing longitudinal research, results will be compared with this previous research. Ageing in Prader-Willi syndrome:Twelve persons over the age of 50 years M. A. Maaskant (marian.maaskant@maastrichtuniversity.nl)*, M. Sinnema, C.T. R. M. Schrander-Stumpel, H. Boer, L. M. G. Curfs *Maastricht UniversityGovernor Kremers Center, The Netherlands Aim: The life expectancy of persons with Prader-Willi syndrome (PWS) has increased in recent decades. The aim of this study was to contribute to the knowledge on characteristics of people with PWS at an older age. Method: Twelve persons with PWS (4 deletion; 8 mUPD) aged 50+, are described. Data on physical, behavioural, psychiatric and ageing characteristics were collected through semi-structured interviews with these persons and their main carers. Results: Cardiovascular diseases, diabetes, dermatological and orthopedic problems were common physical complaints in older people with PWS. Functioning in ADL (Activities of Daily Living), psychological functioning, physical functions and care dependence were substantially worse in the older age group (50+) compared to younger persons (1849 yrs). Behavioural problems were also frequent in the older people with PWS. Seven out of eight persons with mUPD had a history of psychiatric illness. Conclusions: Given the results, we hypothesize that premature aging occurs in PWS. The care for older people with PWS requires a lifespan approach that recognizes the presence, progression and consequences of specic morbidity. Special medical surveillance of people with PWS from 40 years onwards is necessary. The Sensory experience of aging of adults with intellectual and developmental disabilities N. Baum (nehama@mukibaum.com)* & M. Edwards *MukiBaum Accessibility Foundation, Toronto, Canada Aim: Research suggests that individuals with intellectual and developmental disabilities show signing of aging earlier than the general population. This presentation will focus on sensory changes that occur during the aging process and their impact on behaviour and the environment. Method: In this pilot project, 10 individuals with intellectual disabilities served in a community-based program and 10 non-disabled persons participated in the study. A questionnaire exploring the sensory experience of aging was developed. Direct and proxy interviews were conducted. Results: Qualitative data analysis was done showing a similarity in the sensory experience of aging in both populations, suggesting the universality of the process. Conclusions: It is suggested that in spite of differences in expression abilities of the two populations, the sensory experiences of aging and their impact on behaviour seem to be similar. A further exploration with a larger sample size examining the effect of various sensory interventions on both behaviours and quality of life is needed.

Symposium: End of life care Understanding end-of-life care for people with intellectual and developmental disabilities T. A. Savage (tsavag2@uic.edu)*,T.T. Moro, J. Boyden & A. A. Brown *University of Illinois at Chicago, US Aim: In the United States, people with intellectual or developmental disabilities (I/DD) experience worse health and more barriers to quality health care, despite having a life-expectancy equivalent to that of the general population. This disparity is particularly salient at the end of life. The aim of this study is to describe the perspectives of people with I/DD, and their professional and family caregivers on end-of-life care. This study is unique because end-of-life care data are obtained directly from people with I/DD. Method: A qualitative, exploratory approach was used to collect focus group and individual interview data from people with I/DD, and family and professional care givers. Family and staff participants experienced the death of an adult with I/DD, and participants with I/DD experienced the loss of someone close to them. Results: Participants vividly recalled losing a loved one and their experiences surrounding the loss. Family and staff participants described the facilitators and barriers to quality end-of-life care. All of the participant groups discussed improving end-of-life care for people with I/DD. Conclusions: Findings from this study provide a foundation for understanding how end-of-life care is currently being administered, identies the gaps in our current understanding, and outlines areas that need improvement. Issues raised by community living staff caring for people with intellectual disability approaching the end-of-life M. Wiese (michele.wiese@sydney.edu.au)*, R. J. Stancliffe, S. Balandin, G. Howarth & A. Dew *University of Sydney, Australia Aim: The aim of this study was to explore the current status of end-oflife care and dying of people with intellectual disability as experienced by staff of community living services in Australia. Method: Focus groups and individual interviews were conducted with staff, guided by grounded theory methodology. Results: The presentation reports on ve identied key issues: knowledge of dying, ethical values, the where of the caring, the how of the caring, and post-death caring. The presentation also details how these issues occurred in relationship to the partners involved,including the dying person, fellow clients, family, external health services and the coroner. Conclusions: End-of-life care represents a complex interaction between the care issues and the partners involved in care. A sophisticated staff skill set is required to ensure that community living services can offer people with intellectual disability quality care at the end of their life. Communicating with children and young people: A Toolkit to support end of life care S. Read (s.c.read@nur.keele.ac.uk)* *Keele University, Staffordshire, UK Aim: A toolkit can be described as a set of tools designed for a specic type of work, kept in a special box or bag; or a collection of information, resources or advice for a specic area or activity. This paper introduces a toolkit, funded by the UK Department of Health, entitled Communicating with Children, Young People and Families Where There is a Learning Disability, to help professional carers when providing end-of-life care. This presentation provides the rationale for the project, describes how the toolkit was developed, introduces the toolkit itself, and explores its potential from an educational and practical perspective. Method: Action research provided a framework for development of the toolkit and involved a range of practitioners. Results: Collaborative approaches to the toolkit development enabled the resource to be exible and practical. The toolkit has 26 components to help palliative care professionals in a variety of healthcare settings and contexts. Conclusions: Toolkits need to be accessible, portable, exible and cost effective to reach their maximum potential. They also have to t the purpose of use. Action research provided an appropriate framework to enable a range of practitioners to work together to ensure the resource was a t with purpose.
Aging and Lifespan
Symposium: Multiple topics: Services and dementia Ageing with an intellectual disability in rural areas S. Wark (swark@ascentgroup.org.au)*, R. Hussaink, & H. Edwards *School of Rural Medicine, University of New England and The Ascent Group, Australia Aim: In recent years, a combination of factors have seen life expectancies for people with intellectual disabilities increase dramatically. While this improvement is naturally a very desirable outcome, there are limited policy frameworks and little information regarding the impact of rurality on this relatively new phenomenon. The purpose of this study was to gain an understanding from Australian disability-support staff in rural areas regarding the most important issues facing them as they support people with intellectual disabilities who are ageing. Method: A three-round Delphi research model was utilised over a period of twelve months. The participant group (N = 31) included representatives from fourteen different rurallybased disability service agencies. Results and Conclusions: A thematic analysis identied specic areas of concern including funding, inadequate/ inappropriate training, access to relevant services, medical/health problems, time constraints, and family dynamics. The results detail a number of important items relating to the ageing of people with intellectual disabilities in rural localities. The ndings have implications for Government Departments, disability service providers, and training entities, in both the delivery of services to individuals with intellectual disabilities who are ageing and the training of the staff who support this cohort of people. Towards developing an understanding of individual experiences of ID and dementia K. Watchman (K.Watchman@ed.ac.uk)* *Lecturer in Health and Social Care, University of Edinburgh, Scotland Aim: To begin to understand how people with intellectual disabilities (ID) construct their experiences of dementia. Method: A longitudinal, ethnographic approach to this PhD study produced three individual case reports. Fieldnotes, pictorial documentation, narrative, and nonverbal communication supported observations of the lives of participants living in an ID group home, a generic care home for older people, and alone with outreach support. Results: The experiences of people with ID were not constructed by dementia, as this diagnosis was not shared with them. Nor were experiences constructed by their care setting but by the practices within that setting. People with ID and dementia became marginalised due to a signicant lack of crossover of knowledge between staff working in ID settings and in dementia settings. This happened even if the participant had previously enjoyed a socially active, independent lifestyle. Conclusions: Not sharing the diagnosis of dementia, or information relating to the diagnosis, was the starting point for the emerging pattern of stigma and increased isolation. The research highlights how the inclusion of people with ID and dementia in research and practice has not progressed at the same rate as it has separately for people with ID and people with dementia. Using Balanced Scorecard to maintain consumer-driven outcomes in organisation-wide change for older adults with intellectual disability S. Brandford (sharon.brandford@idea.org.nz)* & N. McKenzie *IHC, NZ Aim: A 4-year project of organizational change is underway by New Zealands largest disability provider to strengthen its ability to support people who are ageing. Method: The scale of the project necessitated robust project management and evaluation to ensure initiatives achieved goals, organizational change occurred, and all stakeholders engaged. A Balanced Scorecard process was adopted to implement a plan with measurable consumer-driven performance indicators. Results: IHC can track progress toward consumer objectives, while simultaneously developing internal procedures. Conclusions: This presentation will describe what pre-existing research has guided the project planning process, and the impact that this has had on the projects outcomes.

Symposium: Falls and aging people with ID Reconstructing the fall: Individual, behavioural and contextual factors associated with falls in individuals with intellectual disability S. Cahill, R. Stancliffe (roger.stancliffe@sydney.edu.au)*, L. Clemson & S. Durvasula *Faculty of Health Sciences, The University of Sydney, Australia Aim: Falls are a signicant problem for people with intellectual disability (ID), however there has been little inquiry into falls from the perspectives of individuals who fall and their carers. This study aimed to identify the individual, behavioural and contextual factors that contributed to a recent fall. A secondary aim was to assess the feasibility of the Quickscreen falls risk assessment tool for individuals with ID. Method: The research involved home visits, fall reconstructions (safe re-enactments of a recent fall) and interviews involving nine individuals and their carers. Interviews were recorded, transcribed verbatim and major themes identied via thematic analysis. The Quickscreen was carried out as per the test requirements with minimal modication. Results: There was an interactive relationship between factors associated with falls. We identied 17 themes that contributed to falls, including decreased physical capacity, unsafe behaviours, limited hazard awareness and contextual support. The standard Quickscreen was found to be inappropriate for this population. Conclusions: Our ndings broadened the focus to include individual, behavioural and contextual factors related to falls. Additionally, observational methods, interviews and carer assistance were valuable in offering insight into falls. The fall reconstruction technique is suggested as a supplement to previously veried physical capacity assessments. Posters:
Aging and Lifespan
Cognitive decline in Down syndrome adults: A Brazilian pilot study using a brief neuropsychological battery L. Fonseca (lucianafonseca@apaesp.org.br)*, L. Guilhoto, E. A. Cavalheiro & C. Bottino *Center for Support of the Aging Process, Association of Parents and Friends of Individuals with Intellectual Disability, Sao Paulo, Brazil Aim: To analyze the use of the Cambridge Cognitive Test for Mental Disorders of the Elderly (CAMCOG) in a pilot group of people with Down syndrome (DS) who are at risk of dementia onset. Method: CAMCOG was administered to 10 patients in an adult daycare facility. The participants were randomly selected among 48 DS individuals excluding those with severe-profound level of intellectual disability (ICD-10) or were clinically diagnosed with dementia. Results: Mean age was 45 years (SD = 6.89, range: 3655) and mean CAMCOG score was 50.8 (SD = 11.52, range: 3768) from a total of 107. From all subscales, attention-calculation would need adaptation since 70% of the participants scored below the oor value. Memory was the most sensitive area, showing larger variability (SD = 4.90). Scores for subscales were: Orientation (mean: 6.60, SD = 2.22, range: 310); Language (mean: 15.90, SD = 3.24, range: 1122); Memory (mean: 11.40, SD = 4.90, range: 218); Attention-Calculation (mean: 0.5, SD = 0.97, range: 03); Praxis (mean: 6.90, SD = 1.73, range: 410); Abstract Thinking (mean: 2.70, SD = 1.49, range: 15); Perception (mean: 6.80, SD = 1.03, range: 58). Conclusions: Data analysis substantiates the need for minimal modications in CAMCOG to detect cognitive function decline in patients with DS. Nevertheless, this scale may be an efcient instrument if compared over time. Further research is being conducted by our group with a larger sample. Aging and intellectual disability: Family perspective about support and needs L. Gomez (gomezlaura@uniovi.es)*, A. Rodrguez, M.Verdugo, & P. Navas *Universidad de Oviedo, Spain Aim: The important role of siblings in advanced stages of the family-life cycle and the lack of research are the reasons driving the development of this study. This research is focused on knowing the support needs of siblings of persons with disabilities who have adopted the role of primary caregivers, and comparing their perspectives with those of parents whose relatives with intellectual disability were over 40 years of age. Method: We performed nine focus groups composed of parents and three groups composed of siblings. NUD*IST software was used for data analyses. This program allowed us to obtain a hierarchical structure of concepts and to use text as analysis units so that the views of parents and siblings could be compared. Results: Both groups, despite sharing many opinions, showed different shades of opinion regarding issues such as the type of aid offered by the administration, the adaptation of direct care services to elders needs, or leisure time options, among others. Conclusions: There is a need to provide differentiated treatment policy guidance and family support programs that take into account not only parental needs, but also those of siblings. Evaluation of mobility and falling risk in subjects with Down syndrome in aging process A. Gonalves (alinesouza@apaesp.org.br)*, F. G. Conceio, E. Cavalheiro & L. Guilhoto *Center for Support of the Aging Process, Association of Parents and Friends of Individuals with Intellectual Disability, Sao Paulo, Brazil Aim: Our objective was to evaluate mobility and falling risk in adult individuals with Down syndrome (DS). Method: Individuals with DS were screened in an outpatient unit for people with intellectual disability aged over 35 years. Individuals were included if they had no dementia or severe cognitive impairment. Mobility and falling risk were accessed through the Timed Up and Go Test (TUG) performed by one examiner. Results were compared with normative data from typical young adults and elderly individuals (Wall et al, 2000). Results: While 48 subjects were screened, 27 met inclusion criteria and 15 (11 men) were randomly selected for the pilot study. Mean age was 41 5.8 yrs and TUG mean duration was 13.8 3.46 seconds. Individuals with DS took twice as long as young individuals (13.8 3.46 7.36 0.95, p < 0.005) and 1.6 more times than healthy elderly (13.8 3.46 8.74 0.85, p < 0.005) to complete the test. Nevertheless they performed it faster compared to elderly with high risk of falling (13.8 3.46 18.14 4.6, p = 0.022). Conclusions: TUG time was longer in DS group compared to young and healthy elderly subjects. The results show a risk of falling in adult DS subjects over the age of 35 years.
Fear of falling in older people with intellectual disabilities S. Foran (sforan@wit.ie)*, P. McCallion & M. McCarron *Waterford Institute of Technology, Ireland Aim: To assess the reliability of proxy reports of Fear of Falling (FOF) among people with intellectual disability (ID). Background: There has been little investigation of FOF in people with ID. Valid and reliable measurement approaches are a particular challenge. Previous studies have suggested that proxy respondents may not be reliable alternate assessors of subjective impressions and experiences but this has not been specically examined for FOF. Method: Purposive samples of 21 self-reporting people with ID aged 40 and over, their nominated key workers (n = 21) and additional support workers (n = 21) were accumulated. Test re-test reliability and inter-rater reliability was assessed for a global FOF item. The degree of FOF and activity restriction due to FOF was also investigated. Results: Inter-rater reliability among the different pairings of reviewers was found to be moderate to excellent with Kappa = 0.77 on ratings of the FOF item. Test re-test reliability for each group of reviewers for the FOF item was also found to be excellent (0.95). Conclusions: Reliability of assessments of FOF by proxy respondents ranged from moderate to excellent. These ndings regarding use of proxy-recorded data have the potential to support expanded consideration of FOF in people with ID.

Posters: Translation and test of The Adaptive Behaviour Dementia Questionnaire (ABDQ) into Norwegian F. Kibsgaard Larsen (frode.larsen@aldringoghelse.no)*, L. verland & . Kirkevold Norwegian Centre for Research, Education and Service Development Aim: A higher proportion of people with intellectual disabilities (ID) will achieve older age and will develop age-related diseases such as dementia. In Norway, screening tools to identify dementia in people with ID have not been developed. Tools used for the normal population require cognitive abilities that persons with ID do not possess leading to challenges in clinical assessment and research. Thus we decided to translate an alreadydeveloped screening tool for dementia in people with ID. Method: The Adaptive Behaviour Dementia Questionnaire (ABDQ) (Prasher 2004) is an informant-based screening tool designed to detect dementia of the Alzheimer type in adults with Down syndrome and others with intellectual disabilities. It proceeds from the Adaptive Behaviour Scale (Nihira 1974). ABDQ has been translated into Norwegian and tested for the degree of agreement among raters. Results: This paper presents a method of translation of a questionnaire and testing of ABDQs inter-rater reliability and face validity. Conclusions: This is an ongoing study, but initial use of the ABDQ shows a high degree of validity. If the reliability of the Norwegian version is satisfactory, it will be made freely available on the website of the Norwegian Centre of Ageing and Health. Emotional and tangible reciprocity in older caregivers of adults with intellectual disabilities E. Perkins (eperkins@mail.usf.edu)* & W. E. Haley *Florida Center for Inclusive Communities/UCEDD University of South Florida, US Aim: Previous research indicates that individuals with intellectual disabilities (ID) may provide reciprocal benets to their caregivers. This study investigated whether reciprocity (the balance between given versus received) was associated with quality of life variables of older caregivers. Reciprocity was measured using tangible reciprocity (e.g. help with household tasks), and emotional reciprocity (e.g. verbal/non-verbal affection). Method: A cross-sectional convenience sample of 91 parental caregivers (aged 50+ years, M = 60.8) of co-residing adult children with intellectual disabilities, (aged 18+, M = 29.7), were surveyed. Results: Caregivers reported giving more tangible and emotional support than they received. Relative disadvantage (i.e. giving more than received) in tangible reciprocity was associated with increased depressive symptomatology and poorer mental health, but also reduced desire for seeking alternative residential placement of the care recipient. Tangible reciprocity was not associated with physical health or life satisfaction. Emotional reciprocity was not associated with any quality of life measures. Conclusions: In older caregivers, reciprocal imbalance with tangible tasks may be particularly noteworthy for ascertaining current psychological well-being. The greater commitment to continued co-residence of less reciprocal care recipients may suggest a reticence of these lifelong caregivers to consider alternative residential placement, at a time when openness to future planning is more crucial. Frontotemporal dementia in intellectual disability:The central role of the educational program, environment care and networking M. Rapazzini (marianna.rapazzini@libero.it)*, M. Kolb, M. Zurcher, S. Pelascini, L. Berva & M. Scherler *University of the Sacred Heart, Department of Psychology, Milan, Italy Aim: This study covers an educational intervention in a day care center and a nursing home of an adult with several intellectual disabilities and frontotemporal dementia, over a period of ve years. This quality research studies the role of a professional educator, like a translator of specialist information in daily life to create the educational program and the relevance of networking to improve quality of life in aging. Method: In this qualitative case study data was collected through participant observation and an observational scale of behavioural changes. Results: Networking involved the intervention of a geriatrician, a neurologist, and a psychiatrist for the medical aspects as well as the family as primary support. Family information and suggestions from specialists about the functioning in several areas of life skills were collected to create the educational program. In this way it is possible to adapt the intervention quickly based on the needs of the person. Conclusion: A professional educator has a privileged role in the care of a person with ID and dementia: a translator of specialist information in daily life to improve the quality of life in aging. Posters:
Aging and Lifespan
Developing a network for improving palliative care for people with ID I.Tuffrey-Wijne (ituffrey@sgul.ac.uk)* & A. McKie *PCPLD Network, St Georges Unviversity of London, UK Aim: To improve end of life support for people with intellectual disabilities (ID), and to support practitioners and carers who work in this area. Method: The Palliative Care for People with Learning Disabilities (PCPLD) Network was founded in the UK in 1998. It has developed signicantly in recent years, most signicantly through developing a website (www.pcpld.org). The Networks aims are to raise awareness of the palliative care needs of people with ID, promote best practice in the palliative care of people with learning ID, and enhance collaboration. The PCPLD Network does this by: providing a forum which facilitates communication between members of the Network through the website and through regional meetings, supporting and promoting educational opportunities, and recognizing best practice through an annual award scheme. Results: The Networks membership has tripled in the past year, and includes non-UK members. Members are mostly professionals working with people with ID at the end of life. Successful conferences and the award for best practice have contributed to achieving its aims. Conclusions: There is a clear need for networking and sharing best practice among professionals. New opportunities for e-networking need to be explored further. Comparison of the Actiwatch and EEG sleep registration in older people with ID: A pilot study E. van Dijk (m.echteld@erasmusmc.nl)*, H. Evenhuis & M. A. Echteld *Erasmus Medical Center, Department of Intellectual Disability Medicine, Rotterdam, Netherlands Aim: The Actiwatch is a wrist-worn motion-based device used for the measurement of sleep. While it is feasible for use in older people with intellectual disability (ID), its sensitivity setting for valid sleep measurements with older adults with this population is unknown. This study aims to determine which sensitivity setting of the Actiwatch corresponds best with EEG sleep registrations (gold standard). Method: We will perform EEG sleep registrations (TMS Porti 7) and Actiwatch (Actiwatch AW7) measurements simultaneously in 10 people with ID aged 50 years and over, in their own living environment for 48 hours continuously. Data of the EEG registration will be converted to a binary form (asleep/awake), and then compared to Actiwatch sleep data based on a range of sensitivity settings. Results: Measurements will take place in January 2012. Conclusions: The criterion validity data from this study will greatly improve the Actiwatchs utility for clinical practice and its usefulness for scientic sleep research. Conclusions will be based on the feasibility of home EEG registration in older people with ID, and on which sensitivity setting of the Actiwatch can be used best in this population. Supporting Derek a training DVD to support staff working with people who have ID and dementia K. Watchman (K.Watchman@ed.ac.uk)* *Lecturer in Health and Social Care, University of Edinburgh, Scotland Aim: To raise awareness and understanding of the perspective of people with intellectual disabilities (ID) and dementia. Method: A DVD lasting 16 minutes. Part 1, Supporting Derek, is a short drama depicting everyday life in a shared home for people with ID, where one of the residents has dementia. The scenario contains examples of both good practice and inappropriate care. Part 2, Reection, includes comment on the scenario from people with ID and from professionals that highlight core issues relating to the support of people with ID and dementia. Results: The drama encourages thinking from the perspective of the person with dementia and gives good practice examples. Conclusions: The short DVD promotes holistic support that incorporates maintaining abilities and providing services that are individualised to meet the needs of people with ID and dementia. The DVD, with an accompanying training pack, was produced by the University of Edinburgh and Joseph Rowntree Foundation. http://www.jrf.org.uk/publications/supporting-derek

Symposium: Sleep disturbances The use of phototherapy for adults with autism apectrum disorders J. Barnhill (jarrett_barnhill@med.unc.edu)* University of North Carolina School of Medicine, Chapel Hill, NC, US Aim: Individuals with autism spectrum disorders (ASD) experience higher levels of sleep disturbance and mood disorders. Most sleep disruptions are related to decreased total sleep time since childhood, sensitivity to sleep hygiene disruptions, or aberrant patterns of synthesis and release of melatonin. This presentation focuses on an unblended trial of phototherapy for individuals with ASD and distinct seasonal variability in mood and behaviors. Method: Ten patients were selected due to clear seasonal variability in sleep-wake cycles, mood, and disruptive behaviours. In addition to the existing medication regime, early morning light exposure at 10,000 lux for 30 minutes was begun in October and terminated in mid-April. Results: Each patient improved signicantly with no obvious complications. These results suggest that seasonal variability in mood as well as obsessive/ritualistic behaviors, irritability, hypo/bradykinesia and hypersomnia. Conclusions: Phototherapy is a noninvasive/pharmacological intervention for circadian disruptions due to: phase shifts and delays or aberrant timing of melatonin production; seasonal changes in photoperiod that inuence tryptophan hydroxylase activity (serotonin production); and, mood related changes in adults associated with seasonal variability in neurobehavioral symptoms. This presentation will focus on the rationale and current neuroscience literature on phototherapy and seasonal mood disorder in ASD.
Biological and Biobehavioural
Symposium: Diabetes and weight management Shape Up-LD: Piloting a manualised weight management programme for persons with mild-moderate intellectual disabilities H. Crocker, R. Beeken, A. Hassiotis (a.hassiotis@ucl.ac.uk)*, S. Fovargue, R. Omar, R. Hunter, M. King & J. Wardle *Mental Health Sciences Unit, University College London, England Aim: Obesity rates have risen in the UK over the last decade. Being obese reduces life expectancy, increases the risk of diseases, and compromises quality of life. An increased prevalence of obesity in people with intellectual disabilities (ID) has been demonstrated. The aim is to evaluate a manualised weight management programme (Shape Up-LD) for overweight and obese persons with mild-moderate intellectual disabilities through a single-blind, pilot, randomised controlled trial comparing Shape Up-LD versus usual care. Acceptability of the intervention and outcome measures, compliance, recruitment and retention, will be explored. Qualitative interviews will also be conducted with both service-users, their carers, and service-providers. Method: Sixty people with mild-moderate ID and a BMI > 25, and their carers will be recruited to a two-armed RCT and receive either Shape UpLD or usual care. The intervention involves 12 weekly sessions of healthy eating messages and teaching people new behaviours to manage their weight with the support of their carer. Results and Conclusions: Assessments will be conducted at baseline, 3 and 6 months, to detect changes in weight, body fat, waist circumference, blood pressure, blood cholesterol/ LDL/ glucose levels, mental health, quality of life, self esteem, knowledge and behaviours, with qualitative interviews at 12 weeks.
Carers views of sleep disorders in adults with intellectual disabilities P.Triantafyllopoulou (pt94@kent.ac.uk)*, G. Murphy & P. McGill *Tizard Centre, University of Kent, UK Aim: To identify the most common sleep problems carers believe adults with intellectual disabilities (ID) tend to experience; investigate whether the degree of ID affects sleep problems; and, look at whether carers views of the individuals challenging behaviours correlate with sleep problems. Method: The total adult population registered as having ID in a South London NHS Trust and their carers were contacted, out of which 155 participated in the study. Carers completed the Childrens Sleep Habit Questionnaire (adapted for adults), the functional assessments survey (investigating physical and intellectual abilities), and the Short Behaviours That Challenge Checklist. Results: Carers reported high prevalence of sleep problems. The most problematic areas were found to be sleep onset delay, sleep duration, night waking and daytime sleepiness followed by parasomnias and sleep disordered breathing. Conclusions: Findings conrmed that adults with ID experience sleep problems, with specic sleep problems highlighted within this population. It was also conrmed that adults with severe ID and challenging behaviour experience more sleep problems than adults with higher functioning abilities and no challenging behaviours. Future research should concentrate on specic techniques for treating sleep problems and perhaps investigate in more depth the correlation between severity of ID, challenging behaviour, and sleep.
Prevalence and management of diabetes in people with intellectual disabilities L.Taggart (l.taggart@ulster.ac.uk)* *University of Ulster, Northern Ireland Aim: People with ID are at a higher risk of developing diabetes due to higher obesity levels and poor diets. The aim of this study was to explore the prevalence and management of diabetes in people with ID. Method: Two methods were employed. Firstly, all GP Practices were contacted and asked to provide gures for the number of people with ID and diabetes registered within their practice. Secondly, a postal survey was forwarded to nursing and residential staff caring for people with LD who had diabetes. Results: Obtaining accurate prevalence gures of diabetes in people with ID from the GP practices was found to be methodologically problematic. The nursing and residential staff completed questionnaires on 186 people with ID with diabetes: 67.2% had Type 2 and 32.8% had Type 1 diabetes. Overall, the diabetes management of this population by staff was found to be poor. Conclusions: Findings from this study highlight the difculties that GP practices encounter in recognizing and coding a person to have an ID as well as diabetes, thereby deating prevalence rates. The poor management of this population raises concerns that require immediate attention pertaining to staff training.

Posters: Outpatient clinic Unique: Diagnosis, follow-up and systematic monitoring of people with rare genetic causes of intellectual disability E. Bakker-van Gijssel (Esther.bakker@siza.nl)*, H.Van Schrojenstein Lantman-de Valk, M. Willemsen & T. Kleefsta *Siza Hartenkoning 3 6871 XV Arnhem, The Netherlands Aim: The cause of intellectual disability (ID) is unknown in approximately 50% of the cases. Knowing the cause is very important to affected individuals, their families and their environment. It will give an idea of the prognosis, related comorbidity, and associated behavioral problems. Method: In the period June 2008September 2011 about 250 individuals with unknown causes of ID were invited for a multidisciplinary clinical evaluation. This was followed by standard and/or specic genetic and metabolic tests making use of the latest techniques. Selected individuals lived in residential settings associated with three large service providers for people with ID in the Netherlands. Results: Approximately 25% of the patients were diagnosed (preliminary results). Genetic causes of ID are heterogeneous and therefore single cause is often rare. The departments of Human Genetics and Primary Care, the chair Health Care for people with intellectual disabilities of the RUMCN together started an outpatient clinic named Unique. People with rare causes of ID can visit Unique to be diagnosed, for a follow up and systematic monitoring of comorbidity, and for counseling. Conclusions: An overview of the diagnoses will be given. The added value of the multidisciplinarity of Unique will be discussed. Congenital hypothyroidism in a screening unit in Brazil: Do lower cutoff values promote more disability prevention? M. Giusti, S. M. Hadachi, E. A. Cavalheiro & L. Guilhoto (lauragui@gmail.com)* *APAESP, Sao PauloSP, Brazil Aim: To describe congenital hypothyroidism (CH) incidence during the last 9 years in Sao Paulo screening unit (APAESP). Method: Blood spot screening; conrmatory serologic tests when NTSH was higher than cuttoff value (>20 mU/liter until August-2008; >15 mU/liter after September-2008). Retrospective analysis was possible from January-2003 to September-2011. Thyroid ultrasound was ordered in all cases and analysis was available one year before and after change in cutoff value. Results: Considering the new cutoff value (>15 mU/liter) after September-2008 (total cases 2,334/9 yrs) there was an increase in conrmed cases from 1 : 1,794 (2003) to 1 : 718 (2011) and to 1 : 1,439 with old limit (>20 mU/liter) (total cases 1,698/9 yrs). One year before and after cutoff change, 149 CH children were followed at APAESP. Etiology was available in 58 which revealed thyroid dysgenesis (15.5%), goiter (1.5%), and normal gland (83%); normal gland patients (52% born after cutoff change) had median NTSH value of 20.8 mU/ liter (IQR 17.128.5) and the remainder, 21.9 mU/liter (IQR 17.825.8). Conclusions: CH incidence during last 9 years in Brazilian regional unit APAESP was inuenced by NTSH screening cutoffs changes. Although lower limits identied more children, impact on intellectual disability prevention is unclear since most additional cases may have dysfunctional thyroid. Computer-based system analyzing heart rate under S1 S2 paradigm in persons with severe motor and intellectual disabilities I. Kobayashi (iwan@u-gakugei.ac.jp)*, H. Nunokawa & H. Ooe *Center for the Research and Support of Educational Practice, Tokyo Gakugei University, Tokyo, Japan Aim: We have developed and applied a computer-based heart rate (HR) analysis system (i-HR) to conrm the replies of people with severe motor and intellectual disabilities (SMID). Although HR changes under the S1 S2 paradigm have often been checked to nd their anticipatory response, no such function has been developed. This paper reports a new system including the function. Method: In the system design, two operation modes have been established: manual mode and automatic mode, in which a personal computer (PC) presents stimuli, and for which each stimulus, the S1 S2 interval, and trial time are xed in the setting. In both modes, HR changes between S1 and S2 are displayed on-screen in real time. Results: We implemented the system by adding a new function to our i-HR system. A PC directly presents stimuli, sounds, pictures, and movies. Objects are operated via an output terminal. Test results conrmed its function without error. Conclusions: We developed a new function of real-time presentation of HR changes under S1 S2 paradigm for people with SMID. Trial testing conrmed errorless system functions. Posters:
Biological and Biobehavioural
The relationship between diffusion parameters of the corpus callosum and developmental outcome in preterm infants M. Morimoto (morimoto@koto.kpu-m.ac.jp)*,T. Hasegawa, K.Yamada, T. Chiyonobu, S.Tokuda, A. Nishimura & H. Hosoi *Department of Pediatrics, Kyoto Prefectural University of Medicine, Japan Aim: In order to elucidate the relationship between diffusion parameters of the corpus callosum and developmental outcome in preterm infants, we studied the corpus callosum in preterm infants using quantitative tractography, and estimated their developmental quotients at three years of age. Method: We studied 34 preterm infants born at less than 34 weeks of gestational age (GA). Diffusion tensor imaging (DTI) was obtained at a term-equivalent age (3741 weeks of corrected GA). The CC and callosal tract were parcellated into four parts: the genu, body, isthmus, and splenium. We measured the fractional anisotropy (FA) value and apparent diffusion coefcient (ADC) of each callosal tract using DTI-based tractography. Their developmental quotients at three years of age were estimated using the Kyoto Scale of Psychological Development. Results: In the isthmus, FA values exhibited a signicant correlation with the developmental quotients (DQ) of the cognitive and adaptive (C-A) area at three years of age. The diffusion parameters in the other parts of the corpus callosum showed no signicant correlation with DQ of any areas. Conclusions: The reduced FA values in the isthmus at a term-equivalent age may affect the cognitive and adaptive abilities. Pain biomarkers and children with developmental disability: Salivary hormones and metabolites differentiate pain and no-pain subgroups of children with cerebral palsy F. Symons (symon007@umn.edu) Center for Neurobehavioral Development,University of Minnesota, US Aim: Given the growing health relevance of the salivary metabolome, we undertook a proton nuclear magnetic resonance (NMR) study to compare a set of nociceptive-relevant salivary biomarkers from a clinical sample of children with cerebral palsy (CP) with and without pain. Method: Following informed consent, 15 (73% male) children with CP participated (mean age = 9.4 yrs, SD = 4.6 yrs; mean GMFCS = 3.13, SD = 1.4). Four children (100% male, mean age = 9.6 yrs) were reported to have pain (at least 1 episode >4 intensity [010] >5 min) during the 1-week prior to saliva collection based on parent report using the Dalhousie Pain Interview (DPI). Approximately 13 ml of unstimulated saliva was collected per participant using the salivette system and perchloric acid extracts of saliva samples were analyzed on a 700 MHz NMR. Results: Partial Least Squares Discriminant Analysis (PLS-DA) showed a clear, unequivocal separation of those children with/without pain. The majority of the salivary metabolite levels were higher in children with pain versus no pain. Conclusions: The ease with which the samples were collected and analyzed would support the possibility of the regular predictive use of this novel pain monitoring method into clinical practice.

Symposium: Diagnosis The DM-ID: Improving the accuracy of psychiatric diagnoses for individuals with IDD R. Fletcher (retcher@thenadd.org)* *NADD, An association for Persons with Developmental Disabilities and Mental Health Needs, US Aim: The Diagnostic Manual Intellectual Disability (DM-ID): A Textbook of Diagnosis of Mental Disorders in Persons with Intellectual Disability, developed by NADD in association with the APA, is a diagnostic manual designed to be an adaptation of the DSM-IV-TR. Unlike the DSM system, the DM-ID does not rely on self-report, but more on observation as well as reports from others. The DM-ID offers a broad examination of each of the diagnostic categories and includes adaptations of the diagnostic criteria where indicated. Method: Approximately 100 experts in dual diagnosis from around the world were brought together to modify the DSM-IV-TR for use with individuals with IDD/MI. Grounded in evidence-based methods and supported by the expert-consensus model, the research literature was reviewed and adaptations of diagnostic criteria were established. Results: Research to assess the clinical utility of the DM-ID was conducted with 63 clinicians who used the DM-ID with 845 clients from 11 different countries. The results of the research indicate positive clinical usefulness as reported in The Journal of Clinical Psychiatry, 2009, 70(7), 967974. Conclusions: The DM-ID has been widely accepted and has become the gold standard in the eld of dual diagnosis in North America. Evaluation and description of assessment tools for psychiatric disorders E. L. Zeilinger (elisabeth.zeilinger@univie.ac.at)*, I. W. Nader, B. Brehmer-Rinderer & G. Weber *Faculty of Psychology, University of Vienna, Austria Aim: A vast number of intellectual disability (ID)-specic assessment instruments concerning mental health exist. These instruments differ in a number of characteristics, which complicates the choice of an instrument that is best suited for the intended purpose. In this study we developed a comprehensive set of characteristics for the evaluation and description of assessment instruments for psychiatric disorders in persons with ID, to simplify the search for an instrument. Method: A systematic literature search was conducted to identify relevant existing tools for the description and evaluation of assessment instruments. Three tools were found and their content consolidated. Subsequently, missing features and ID-specic attributes were added. Finally, feedback from semi-structured expert interviews was included in the newly-developed set of characteristics. Results: The nal Characteristics of Assessment Instruments for Psychiatric Disorders in Persons with Intellectual Disabilities (CAPsID) comprises two large sections: rst, the conceptual and measurement model; second, the psychometric properties. Each section consists of various subsections and a detailed response format for coding instruments. Conclusions: The usage of the CAPs-ID can help to identify and choose instruments that suit the respective purpose best. Thus, it can contribute to a more reliable assessment of possible psychiatric disorders in persons with ID. The diagnostic subcategories of intellectual disability: A proposal beyond intellectual coefcient D. Gonzlez Castan (info@itineris.org.ar)* & A. S. Aznar *ITINERIS Foundation, Argentina Aim: To generate an alternative classication for persons with intellectual disability that has clinical relevance and is not based on the sterile quantications of the intellectual coefcient. Method: A model of selfdetermination and a comprehensive analysis of its clinical alterations was developed and extensively tested in Americas south cone. Two selfdetermination scales for persons with low and high levels of required supports (each with 24 indicators in simple Spanish), were also developed with professionals, self-advocates and families. Workers in 5 large group homes followed up their clients evolutions (n = 160) based on selfdetermination scores, and made the adjustments to their services based on the same information. Results: Alterations in self-determination (generically: dissipation and alienation) are much more important to determine the clinical situation of a person with intellectual disability than the abstract IQ, which does not vary through time and can not provide information about interaction in daily contexts. Afocus on selfdetermination provides enough of an objective perspective to guide interventions and evaluate services. Conclusion: We propose a modication in the single criteria of IQ for the sub-classication of intellectual disability to replace its categories by three subtypes based on the self-determination.
Challenging Behaviour, Mental Health, and Offending
Symposium: Social information processing in youth with mild to borderline intellectual disabilities Social cognitive skills and social information processing in children with mild to borderline intellectual disabilities M. van Nieuwenhuijzen (m.van.nieuwenhuijzen@vu.nl)* & A.Vriens *VU University Amsterdam, Clinical Child and Family Studies Aim: Children with mild to borderline intellectual disabilities (ID) show inadequate social information processing, which is related to behavior problems. Until now there is a lack of knowledge on the explanation of inadequate social information processing in these children. According to the biopsychosocial model (Dodge and Pettit), social information processing depends on both child and contextual factors. The purpose of this study was to examine the unique contributions of childrens (social) cognitive skills, such as inhibition, working memory, perspective taking, facial emotion recognition, and interpretation of situations, to the variance in social information processing in children with mild to borderline ID. Method: Respondents were 79 children with mild to borderline ID in the age range of 8 to 12 who were given tasks on social cognitive skills and social information processing. Results: The results from the present study show that emotion recognition, interpretation, working memory and inhibition skills are related to social information processing skills. Conclusions: It is concluded that especially emotion recognition and interpretation skills are important cognitive skills that are related to social information processing, and therefore should be the focus of treatment. The relation between parenting, social information processing and externalizing problem behavior in children with a mild to borderline intellectual disability H. Schuiringa (h.schuiringa@uu.nl)*, M. van Nieuwenhuijzen, B. Orobio de Castro & W. Matthys *Utrecht University, Developmental Psychology, The Netherlands Aim: Children with a mild to borderline intellectual disability (MBID) have a 3 to 4 times higher chance of developing externalizing behavioral problems compared to their peers with an average IQ. According to the biopsychosocial model (Dodge and Pettit), two of the explanatory mechanisms of behaviour problems in children are found in social information processing (SIP) and parenting. Little is known about the inuence of parenting on behaviour in children with MBID. This study aims to examine the relation between parenting and problem behaviour, and the mediating effect of SIP, in children with MBID. Method: The study sample (N = 220) consisted of 916 year-old children. The majority (N = 140) are treated for behaviour problems and MBID in Dutch day care settings, while 80 participants come from special education schools for children with MBID. Data were collected through questionnaires about the childs behaviour and parents parenting skills. Parents, teachers, and the youngsters lled out the questionnaires. Additionally, children took social problem solving tests. Results and Conclusions: Data will be reported on the relation between parenting, SIP and behavior in MBID children. The development of an instrument for youth with mild to borderline intelligence in the Dutch criminal justice system I. van Bokhoven (i.van.bokhoven@vu.nl)*, M. van Nieuwenhuijzen, P. Embregts, A.Vriens & W. Matthys *VU University Amsterdam, Clinical Child and Family Studies, Aim: Professionals in the Dutch criminal justice system have a lack of knowledge of the characteristics and limitations of youth with mild to borderline intellectual disabilities (MBID). Therefore, no appropriate interventions are offered. The main objective of this project is to develop an instrument measuring social information processing (SIP) skills, in order to better recognize the competences and limitations of youth with MBID in detention. The present study aimed to examine the reliability of the developed instrument, and whether the instrument discriminates between respondents with and without MBID. Method: Sixty (60) incarcerated adolescents, 30 of whom have a MBID, are to participate in this study. Six video vignettes with problematic social situations will be shown and a structured interview will be administered, offering us information on how social information was encoded and interpreted, and which responses were generated. Results and Conclusions: We expect to nd incarcerated adolescents with MBID to differ in social information processing steps from adolescents without MBID in the same setting. Data collection will be nished in the upcoming month, which will provide us the data on reliability and discriminating capacity of the developed instrument, and will be reported at the IASSID in July 2012.

Symposium: Anger management randomised controlled trial Outcomes of a cluster-randomized controlled trial of a cognitive behavioural anger management intervention P. J. Rose (j.l.rose@bham.ac.uk)*, D. Felce, N. Rose, P. Willner, A. Jahoda, B. Stenfert Kroese, P. MacMahon, A. Stimpson, D. Gillespie, J. Shead, C. Lammie, C. Woodgate, J.Townson, J. Nuttal & K. Hood School of Psychology, University of Birmingham, England, UK Aim: Many people with intellectual disabilities nd it hard to control their anger. This often leads to aggression, which can have serious consequences, such as exclusion from mainstream services and the need for potentially more expensive emergency placements. Anger management teaches people to recognize what makes them angry and learn skills that they can use to cope better with those situations. This symposium will report the main results from a cluster-randomized trial of anger management. Methods: The 12-week intervention took place in day services for people with intellectual disabilities and was delivered by staff in those services. A clinical psychologist trained these lay therapists how to work with a detailed treatment manual, and gave fortnightly supervision. Participants were 179 service users with mild to moderate intellectual disabilities, identied as having problems with anger control. They attended 30 services, which were randomly assigned to one of two conditions: anger management groups or support as usual. Assessments were conducted before the intervention, 16 weeks after randomization and again six months later. Results: The intervention had only a small, and non-signicant, effect on participants reports on a provocation inventory, the primary outcome measure. However, staff ratings of service users anger did decrease signicantly, as did service-users ratings on a more personally-meaningful anger measure. Both service users and staff reported increases in clients anger coping skills, and both staff and home carers reported decreases in challenging behaviour. All effect sizes were relatively small. In post-intervention interviews, service users, lay therapists and service managers all gave uniformly positive feedback about the groups. Conclusions: This study provides the rst evidence from a robustlydesigned and comprehensively-evaluated randomized controlled trial for the effectiveness of a cognitive-behavioural intervention for people with intellectual disabilities.
Symposium:Treatment approaches and care models in mental health and challenging behaviour The impact of comprehensive mental health assessments on ID clients: Ameliorating challenging behaviour through basic health care A. White (alan.white@communities.qld.gov.au)*, G. OBrien, P. White, J. Galstuch-Leon, J. Gavilan, B. Jackson & A. Webster *Mental Health Assessment and Outreach Team, Dept of Communities, Queensland State Government, Australia Aim: It is proposed that clinical and prophylactic health screening, and treating previously undiagnosed physical health concerns, by an IDspecic Mental Health Assessment and Outreach Team using a biologicalpsychological-social approach to assessments as part of a comprehensive mental health assessment, has signicant consequences for the onset of, or minimising the level of, challenging behaviours in people with ID. Method: We collected data from 340 new assessments (N = 340) from around Queensland. This was a total cohort study of all consecutive new referrals over a period of some 30 months. Results: 40.58% (n = 138) of clients had undiagnosed health concerns of a signicant nature to impact on their personal expression through challenging behaviours. Conclusion: The link between untreated physical health concerns and challenging behaviour in clients with ID is one that continues to be routinely overlooked, or even dismissed, as a part of ID. A truly holistic approach to the amelioration of challenging behaviour in the ID client requires careful consideration of basic health status as part of comprehensive multidisciplinary assessment. Treatment approaches for mental illness and challenging behaviour among offenders with intellectual disability S. Hayes (susan.hayes@sydney.edu.au)* *Behavioural Sciences in Medicine, Central Clinical School, Sydney Medical School, University of Sydney, Australia Aim: To conduct psychometric assessment of defendants in nine New South Wales Local (Magistrates) Courts, to ascertain the prevalence of diagnoses of intellectual disability (ID), mental illness and challenging behaviour, and availability of services and diversionary options. Method: Accused persons appearing before the Courts were assessed using a battery consisting of an intelligence test, an adaptive behaviour assessment, and a psychiatric assessment. Results: Full data sets were obtained for 92 participants. Nearly one-third had adaptive behaviour standard scores of less than 70, compared with 16% with IQ score of less than 70. The majority of those with low-adaptive behaviour scores had a range of challenging behaviours contributing to their involvement with the criminal justice system. Over half of participants had a diagnosis of mental illness which became more entrenched with age. Higher rates of mental illness were found for substance abusers. Conclusions: Current treatment approaches are not effective for reducing recidivism among offenders with ID and concurrent diagnoses of mental illness, substance abuse, and challenging behaviour. Evidence shows that offenders with mental illness can benet from assessment and referrals by a court liaison mental health nurse, and a parallel system needs to be established for those with ID. Evaluation of targeted services court for people with intellectual disabilities D. Chadwick (d.chadwick@wlv.ac.uk)* *School of Applied Sciences, University of Wolverhampton, UK Aim: Despite legislative responsibilities to enable equal treatment for people with intellectual disabilities within the criminal justice system (CJS), these people often experience inequitable treatment because those working in the CJS are ill-equipped to meet their support requirements. This study evaluated the process and challenges in setting up a targeted court for people with ID. Method: This ethnographic, mixed-methods study evaluated the experiences of different stakeholder groups regarding the challenges involved in setting up and running the court, and its outcomes including perceived justice and respect. Stakeholders included people with ID, carers, and health, social care and CJS professionals. Data were collected via interviews, focus groups, and surveys. Data were descriptively and thematically analysed. Results: Findings identify the challenges inherent in setting up such a court involving numerous stakeholder organisations with differing agendas and goals. Some of the key issues were identication by the arresting ofcer and the maintenance of momentum for the project by those acting as drivers for the court. Conclusions: Although deemed necessary, development and maintenance of targeted court services for people with ID is a challenging endeavour in need of further exploration and evaluation.

Symposium: Depression and anxiety Diagnosis of (anxiety-related) challenging behaviour in people with ID A. Pruijssers (addy.pruijssers@inholland.nl)* *Research Group Mental Health Nursing, Inholland University of Applied Sciences, Amsterdam, The Netherlands Aim: Understanding challenging behaviour in people with ID is important to prevent and treat it. We developed a guideline to improve the diagnostics of challenging behaviour in this patient group, in particular in relation to anxiety. The purpose of this study was to examine whether the newly-developed guideline leads to improved diagnoses and treatment recommendations. Method: Comparative multiple case study design. Data were obtained from 59 adults with ID, all with challenging behaviour. The sample consisted of two comparable groups: one group used the guideline, whereas in the other group care was provided as usual. Both processes and outcomes were studied. Results: A multidimensional diagnostic approach involving multidisciplinary team efforts can result in a more accurate diagnosis of challenging behaviour in patients with ID, which lead to improved subsequent treatment. Conclusions: The guideline provides good opportunities to improve quality of care for patients with anxietyrelated challenging behaviour.
Symposium: Autism, psychopathology and crime The trajectory of psychopathology in adults with autism K. Gray (kylie.gray@monash.edu)*, J. R.Taffe, A.V. Brereton, C. M. Keating, S. L. Einfeld & B. J.Tonge *Centre for Developmental Psychiatry & Psychology, School of Psychology & Psychiatry, Monash University, Australia Aim: High rates of psychopathology (behaviour and emotional problems) have been consistently reported in children and adolescents with autism. Elevated rates of mental health problems have also been reported in adults with autism. Little, however, is known about the longitudinal development of psychopathology in adults with autism. Method: This study followed a cohort of 119 children and adolescents over 18 years with ve waves of data collection. The mean age of the sample at Time 1 was 8.7 years (sd 4.3), and 24.8 years (sd 4.7) at Time 5. Results: Change in rates of psychopathology from Time 1 to Time 5 will be reported. Outcomes will be reported in relation to psychopathology, social inclusion, living arrangements and employment, and social competence. The relationship between Time 1 outcome (psychopathology) and Time 1 individual factors (age, gender, IQ, psychopathology at Time 1) and environmental factors will be explored. Conclusion: A better understanding of change over time in psychopathology will facilitate the development of specic interventions to help young people with autism. Associations between adult outcomes and individual and environmental childhood factors will be discussed in relation to approaches to early intervention. Autism spectrum disorder and crime: A spurious relationship K. Rasmussen (kirsten.rasmussen@svt.ntnu.no)*, E. Sndenaa, S. B. Hleverschou, K. Steindal, B. Nilsson & J. Aa. Nttestad *Norwegian University of Science and Technology and St. Olavs Hospital, Norway Aim: Research into a relationship between autism spectrum disorder (ASD) and crime is scarce and divergent. The aim of this study is to describe characteristics of persons diagnosed with ASD who have undergone a forensic examination, and to explore any possible relation between the diagnosis and the offence. Method: All forensic psychiatric reports from the year 2000 to 2010, where at least one of the diagnoses given by forensic experts was ASD, were retrieved from the National Board of Forensic Medicine in Norway. Data on demographic characteristics, diagnoses, crimes, situational characteristics, and conclusion of the forensic examinations were collected. Results: Co-morbid diagnoses, both psychotic illness and personality disorders, were common. One third had intellectual disabilities. Violent crimes were the most prevalent index crimes, followed by sexual crimes. Only seven persons were considered legally insane, and these had co-morbid diagnoses inuencing the decision more than ASD by itself. Persons with intellectual disabilities did not differ from the other subjects in terms of criminality or substance abuse. Conclusions: ASD plays a minor role within forensic psychiatry and rarely inuences decisions of criminal responsibility. People with ASD who undergo a forensic psychiatric examination constitute a heterogeneous group. Autism and catatonia Y. M. Dijkxhoorn (dijkx@fsw.leidenuniv.nl)* *Leiden University, Leiden, The Netherlands Aim: Advances in knowledge in autism spectrum disorders (ASD) have led to an improvement in the quality of life. However, there is a substantial subgroup with associated psychiatric disturbances. In recent years we have encountered several clients who displayed severe catatonic symptoms, some full-blown catatonia. Estimates show that between 1017% of people with an ASD show catotonic symptoms (Billstedt et al., 2005; Wing & Shah, 2000), which has led to hypotheses of a biological overlap between psychotic disorders and ASD (Kakkooza-Mwes et al., 2009). Method: In this presentation we will show data we have gathered through extensive case studies of ten adolescents and young adults with medication-resistant catatonia. We have gathered information about their life-cycle, cognitive and adaptive proles, medical history and medication use. We have also developed individual treatment plans and implemented them. Results: We will show primary results of the research on the risk factors and the effect of the pedagogical/educational treatment on the quality of life of these people. The results are promising; most clients improve, start moving independently and start using speech again. Conclusions: Eventually we hope to establish a protocol of good practice that involves both medical, behavioural, educational and pedagogical interventions.
Anxiety of children with ID in Croatia D. Cvitkovic (danielac@erf.hr)* *University of Zagreb, Faculty of Education and Rehabilitation Sciences, Zagreb, Croatia Aim: The study examined anxiety of children with intellectual disabilities (ID) in Croatian regular schools as reported on The Scale of Fears and Anxieties of Children and Teenagers (SCAD 62, Vuli Prtori, 2003). Method: The sample consisted of 12 year old children from regular schools in the capital city and surrounding area (15 children with ID and 15 typical children).They completed the survey in their classroom groups. Results: A great number of the children showed high anxiety levels. The results showed a statistically signicant higher level of anxiety in children with ID compared to the typical children on all measured aspects, except the scale of worry in which no difference was observed between the two groups of children. Conclusion: This nding shows us the need for the creation and implementation of prevention programmes of support for children in inclusive schools.

Symposium: Discontinuation of antipsychotics used for challenging behaviour in patients with intellectual disability Discontinuation of antipsychotics used for challenging behaviour in patients with intellectual disability (ID) G. de Kuijper (gerda.dekuijper@vanboeijen.nl)*, P. Hoekstra & F. Scholte *Vanboeijen, Centre for the Intellectuallly Disabled, Assen, Netherlands Since use of antipsychotics for challenging behaviour in patients with intellectual disabilities (ID) is not evidence-based, is often for longterm, and may have serious side effects, a critical appraisal is needed and discontinuation should be considered. In 2009 and 2010, we investigated the effects of controlled-discontinuation of long-term used antipsychotics on behaviour and on metabolic side effects. In this symposium we will show the results in three presentations. The rst presentation will focus on the outcomes of behavioural measurements; the second will concentrate on weight, Body Mass Index (BMI) and symptoms of metabolic syndrome; and, the third will focus on outcomes of behavioural functioning according to clinical impression, illustrated with some case studies. Controlled discontinuation of antipsychotics (AP): Results and outcomes of behavioural measurements G. de Kuijper (gerda.dekuijper@vanboeijen.nl)* *Vanboeijen, Centre for the Intellectually Disabled, Assen, The Netherlands Aim: (1) To investigate the effects on behaviour of controlled discontinuation of antipsychotics (AP) used for challenging behaviour; and (2) to identify factors that might predict the outcomes. Method: In 99 patients with ID living in residential settings, AP prescribed for behavioural symptoms, and having been used at least one year, were tapered off in two time frames of 14 and 28 weeks, respectively, involving dose reductions of 12.5% of baseline dose every 2 or 4 weeks. Outcome measures were the Aberrant Behaviour Checklist (ABC), and a Visual Analogue Scale (VAS) measuring severity of a individualised target behaviour as rated by the main caregiver. Results: Of 98 participants, 43 achieved complete discontinuation. Mean ABC ratings improved signicantly, both in patients who had achieved complete discontinuation and who had not, with no signicant difference between the two discontinuation schedules. Mean VAS ratings did not show the improvement of ABC ratings, nor worsened signicantly. The presence of extrapyramidal symptoms predicted higher ABC ratings; higher ABC ratings predicted lower odds of complete discontinuation. Conclusions: Discontinuation of AP used for challenging behaviour is associated with improvement in behaviour and can be done in a not a too prolonged period of time.
Symposium: Discontinuation of antipsychotics used for challenging behaviour in patients with intellectual disability (continued) Controlled discontinuation of antipsychotics (AP): Effects on weight, BMI and symptoms of metabolic syndrome F. Scholte. Presented by M. Meijer (M.Meijer@elg.umcn.nl) *sHeerenloo, Centre for the Intellectually Disabled, Apeldoorn, Netherlands Aim: (1) To investigate the effects of controlled discontinuation of antipsychotics (AP) on weight, BMI, and symptoms of metabolic syndrome; and, (2) to identify factors that might be associated with the presence of obesity and symptoms of metabolic syndrome as a result of use of AP. Method: In 99 patients with ID living in residential settings, long-term use AP were tapered off in two time frames of 14 and 28 weeks, respectively. Waist circumference, blood pressure, weight, and laboratory fasting glucose, triglycerides and HDL cholesterol levels were measured at base line and at follow up, 26 and 40 weeks, respectively, after baseline point. Results: Mean BMI and weight decreased signicantly, both in participants who had achieved complete discontinuation and those who had not; mean waist circumference decreased signicantly in the former group at follow-up compared with baseline. In participants who still used AP at follow-up, the prevalence of fasting glucose abnormality had increased signicantly, compared with baseline. More details will be presented, including patients characteristics that might be associated with vulnerability to metabolic side effects caused by use of AP. Conclusions: Discontinuation of AP, both completely and partly, is associated with weight loss and reduced BMI. Controlled discontinuation of antipsychotics (AP) for challenging behaviour: Clinical global impression (CGI) F. Scholte & G. de Kuijper (gerda.dekuijper@vanboeijen.nl)* *Vanboeijen, Centre for the Intellectually Disabled, Assen, Netherlands Aim: (1) To investigate the effects of discontinuation of antipsychotics (AP) on behavioural functioning and to identify factors that might predict the outcome; and (2) to outline case studies of participants who showed (very) much improvement or (very) much worsening in behaviour. Method: Long-term used AP, prescribed for challenging behaviour, were tapered off in two time frames of 14 and 28 weeks, respectively. A secondary outcome measure was the CGI-Improvement Scale, measuring possible change in behavioural functioning, rated by the investigating intellectual disabilitiy (ID) physician. Results: Of 98 participants, 6 showed (very) much improvement and 13 (very) much worsening 2 or 4 weeks after complete discontinuation, or after the time point of maximum dose reduction in case participants had not achieved complete discontinuation. At follow up, after 26 or 40 weeks, these results were shown for 16 and 7 participants respectively. Most of those participants showing worsening in behaviour continued their use of AP and case studies showed difculties in proper diagnosis of co-morbid medical conditions. Behavioural worsening was associated with the presence of extrapyramidal and autonomic neurological symptoms. Conclusions: The majority of patients (91/98) showed no change or improvement in behavioural functioning following discontinuation AP.

Symposium: Systematic reviews and meta-analyses: Contribution to EBP Systematic reviews and meta-analyses: Contribution to EBP A. Hassiotis (a.hassiotis@ucl.ac.uk)*, P. Sturmey & W. Lindsay *University College London, UK This symposium will review the rationale and methods for evidencebased practice and its application to psychosocial treatments for children and adults with intellectual and other disabilities. We will illustrate the applications of these methods with the authors experience in the following areas: systematic reviews and meta-analyses of RCTs and health services research, systematic reviews and meta-analyses of small N experiments and their application (for example, experiments to evaluate staff and parents training). Finally, we will present a review of outcome research, identify evidence-based practices, and identify future directions for practice and research. Adverse drug events in psychiatric inpatients with intellectual disabilities L. Charlot (charlotl@ummhc.org)*, P. Ravin, S. Abend, K. Mastis & A. Hunt *Department of Psychiatry, University of Massachusetts Medical School, US Aim: We conducted detailed chart reviews on a random sample of 72 psychiatric inpatients with intellectual disabilities (ID), taken from a larger group of 198 patients previously described (Charlot et al., 2011) to identify rates of Adverse Drug Events (ADEs). Method: We developed a chart review tool covering 10 possible ADEs using behavioral descriptions for constipation, elevated BMIs, sedation, gait problems, falls, dysphagia, exrtapyramidal symptoms (EPS), dystonia, akathisia and abnormal laboratory values. Attending notes were reviewed to determine whenever a medication was seen as the likely cause of the symptom. Results: Interrater agreement was 90% (10 chart pairs). Patients averaged 2.5 ADEs. Most frequent ADEs were: constipation (69%), BMIs 30+ (42%), and EPS (30%). Taking neuroleptic medications was correlated with sedation, gait changes, and falls (p = 001). Over 60% of the inpatients had multiple medication changes one month prior to admission, and these patients had more ADEs (p = 0.05). Conclusions: The above results informed our development of a Medical Home pilot, in which a specialist team will care for psychiatric outpatients with ID, with a goal of detecting and preventing health problems and ADEs that may drive apparent psychiatric problems.
Symposium: Behaviour support plans The validity, reliability and utility of the Behaviour Support Plan Quality Evaluation Guide II K. McVilly (keith.mcvilly@deakin.edu.au)*, L. Webber,T. Fester, M. Paris, G. Sharp & T. Zazelis *School of Psychology, Centre for Mental Health & Wellbeing, Deakin University, Australia Aim: The quality of behaviour support plans (BSPs) might inuence the quality of the support provided to people with disability who show challenging behaviours. The BSP Quality Evaluation Guide II (BSP-QE II) provides a structured approach to assessing the quality for BSPs.. Previously, it has been used to assess BSPs for children in schools in the USA. We examined the utility of the BSP-QE II for assessing BSPs for adults with an intellectual disability in community support services in Australia. Method: The construct validity of the tool in an Australian context was evaluated using a panel of experienced behaviour practitioners who participated in a multi-round Delphi Study. The inter-rater reliability of the tool was assessed using a random sample of BSPs submitted for evaluation as part of a statutory requirement. Results: The BSP-QE II showed evidence of acceptable construct validity and inter-rater reliability. Overall, there was evidence of a need for substantial improvement in the quality of BSPs. Conclusions: The ndings support the utility of the BSPQE II to inform and evaluate service planning for adults with intellectual disability who show challenging behaviour. The application of positive behaviour support using inter-disciplinary systemic and family-centred intervention C. McIver (craig.mciver@dsc.wa.gov.au)* & K. McVilly *Disability Services Commission,Western Australia Aim: The multi-disciplinary Positive Behaviour Team (PBT) was established in recognition that discipline specic therapeutic interventions were often insufcient to meet the needs of families. The purpose was to evaluate the operation and effectiveness of the PBT, taking into account clinical data relating to people with disability and their families, together with evaluative data drawn from a variety of stakeholder groups. Method: A 2-year evaluation was established in partnership with Deakin University, Victoria, Australia, utilizing quantitative and qualitative data collected from the clinical program and from interviews conducted with a number of key stakeholders. Results: Data analysis suggests challenging behaviour is best addressed taking into account not only the specics of the behaviour, but the family context. The approach was positively received by parents and other key stakeholders, with notable improvements on quality of life measures, and measures of parenting and parental coping. Conclusions: Interdisciplinary practice implemented using a coherent service model and drawing on a combination of evidence-based approaches provides optimal and potentially sustainable outcomes for individual with a disability and their families. This model of service also appears to provide staff with a positive and fullling working environment despite the intensity of the behaviour and family issues. Routine consumer outcome measurement systems for people with intellectual disabilites and challenging behaviour C.Townsend (c.townsendwhite@uq.edu.au)* *Centre of Excellence for Behaviour Support, University of Queensland, Australia Aim: Comprehensive monitoring systems are needed to inform policy and service delivery for people who have intellectual disability (ID) who exhibit challenging behaviour. Human services organizations often measure inputs and outputs but fail to systematically measure consumer outcomes. Within a quality framework, organizations need to commit to approaches that routinely measure the achievement of service user goals articulated within instruments such as Positive Behaviour Support, Person Centred and Active Support Plans. Method: Drawing on the literature within ID and related elds, this paper will consider outcome measurement systems applicable to ID and challenging behaviour. It will consider instruments that could be adopted in such systems. It will address implementation challenges that may accompany such innovations. Results: Consumer outcome measurement systems are a key component of quality service systems. They should be driven by the articulated goals of service users. Validated measures can be applied to measure progress against these goals. Such systems will facilitate evidence-based decision making by families, direct service providers, managers and policy makers. Conclusion: An iterative system is proposed that provides evidence for decision making at the levels of direct service delivery, management and policy.

Symposium: Autism: Diagnosis and treatment Coping Cat Group CBT for children with autism spectrum disorders and anxiety M. A.Viecili (mviecili@yorku.ca)*, J. A. Weiss & S. Fung *York University, Ontario, Canada Aim: This presentation addresses the utility of a modied group therapy program to address anxiety in children with autism spectrum disorders (ASD). Many children with ASD experience clinically signicant levels of anxiety that can negatively impact their daily functioning. Potentiallyefcacious treatment programs have been developed for typically developing children with anxiety, included among them Coping Cat (FlannerySchroeder & Kendall, 1996); however, its use with children with ASD has yet to be determined. Method: This pilot study evaluated the use of group Coping Cat to treat anxiety in 18 children with ASD (812 years old). We examined changes in levels of anxiety, as reported by parents and children with ASD, following twelve 1.5 hour weekly sessions. Results: According to parent-report, there were statistically signicant decreases in child anxiety, and approximately 50% of children demonstrated clinically signicant change. Conclusions: Recommendations for future interventions and research and study limitations will be discussed. Autism spectrum disorders and intellectual developmental disorders M. O. Bertelli (mbertelli@crea-amg.org)*, C. Del Furia, M. Piva Merli & N.Varrucciu *CREA (AMG Research and Evolution Centre), Universit degli Studi di Firenze, Firenze, Italy Aim: Autistic spectrum disorders (ASD) seem to represent one of the most frequent disturbances of childhood development, but the diagnostic boundary with intellectual developmental disorders (IDD) and schizophernia spectrum disorders (SSD) is hard to dene. Studies nd out that IDD and ASD co-vary at very high rates. There are reports of schizophrenic patients with 21% lifetime diagnosis of ASD. This paper will provide a systematic mapping on co-occurrence, the relationship among IDD, ASD and SSD, and a clarication of psychopathological differences and their possible contribution to the development of better criteria for differential diagnosis. Method: A review of the literature of the last 15 years was carried out on Medline, EBSCO, Medmatrix, NHS Evidence and Cochrane Library using the following keywords: autism spectrum disorders, mental retardation, intellectual disability, schizophrenia. Results: SSD, IDD and ASD share some clinical, neuropsychological, and genetic alterations. Most of these may rely on a common base of brain development anomaly. Conclusion: The relationship between ASD, IDD and SSD results appear to be very complex due to diagnostic criteria, etiological factors, socio-cultural aspects and the lacking of adequate tools. Appropriate diagnostic criteria and tool would be desirable to provide a careful treatment and to distribute equal resources. Impact of the emotional development in adults with intellectual disability (ID) for diagnosing autism spectrum disorder (ASD) T. Sappok (tanja.sappok@t-online.de)*, A. Dosen, J. Budczies & A. Diefenbacher *Queen Elisabeth Hospital, Department of Psychiatry, Berlin, Germany Aim: Diagnosing autism spectrum disorders (ASD) in adults with intellectual disabilities (ID) is a challenge, and appropriate instruments are not available yet. The aim of the present study was to assess the impact of the emotional development for diagnosing ASD. Method: The Schema for the Assessment of Emotional Development, SAED was applied with 118 individuals with ID with (n = 62) and without (n = 56) ASD who were referred to Queen Elisabeth Hospital Herzberge due to mental health problems between 2008 and 2010. Additionally, 25 healthy individuals with ID without ASD were evaluated (total n = 143). The capability of the SAED to differentiate between those with and without ASD was assessed by multiple random validation strategy. Results: The items verbal communication, interaction with peers, affect differentiation and the overall result of the SAED have a strong impact for the diagnosis of ASD in adults with ID. Using these variables, the area under the curve (AUC) of the receiver operating characteristic (ROC) curve is 0.81 and the proportion of misclassication by multiple random validation strategy is 0.3. Conclusions: The SAED might be helpful in the diagnostic process in individuals with ID suspected for ASD. These results need to be validated by a prospective study.
Symposium: Mindfulness and acceptance processes and interventions in the eld of intellectual and developmental disability I Mindfulness and acceptance processes in mothers and fathers of children with ASD L. Jones (leah.jones@bangor.ac.uk)*, R. P. Hastings & V.Totsika *Bangor University,Wales, UK Aim: Increased acceptance and mindfulness are associated with lower levels of distress in parents of children with intellectual disability. The aim of the current study was to add to the limited literature by exploring associations between mindfulness and acceptance processes and wellbeing of mothers and fathers of children with autism. Method: Seventy-one mothers and 41 fathers of children with autism spectrum disorder (ASD) completed the study. Parental positive and negative psychological affect, and mindfulness (Bangor Mindful Parenting Scale) and acceptance (Parental Acceptance- ID version) processes were measured via postal questionnaires. Mindfulness and acceptance were measured in relation to the parenting role, and with measures new to ASD research. Results: The mindful parenting (Cronbachs alpha for mothers = .79, and for fathers .77) and acceptance measures (Cronbachs alpha for mothers = .91, and for fathers .90) had good internal consistency. Paternal and maternal mindfulness and acceptance were positively associated with wellbeing, including reduced psychological distress (mean r = .50, range .36 to .63), and increased positive affect (mean r = .43, range .37.49). Conclusions: A number of moderate associations between mindfulness/acceptance and psychological wellbeing were obtained, with a similar pattern of results emerging for mothers and fathers. Psychological acceptance and empowerment as mediators of child behaviour problems on parent mental health J. A. Weiss (jonweiss@yorku.ca)*, M. C. Cappadocia & Y. Lunsky *York University, Ontario, Canada Aim: Raising a child with autism spectrum disorder (ASD) has been associated with high levels of parental distress. A number of studies have examined the psychological mediators of the impact of child problem behaviour on parent mental health. The current study examined the relations among child problem behaviour, parent mental health, psychological acceptance, and empowerment. Method: Participants included 228 parents of children diagnosed with ASD, 621 years of age, who participated in an online Canadian survey of families of people with ASD. Parents completed the Nisonger Child Behavior Rating Scale, Kessler-6, Acceptance and Action Questionnaire II, and Family Empowerment Scale. Results: Acceptance and empowerment were negatively related to the severity of parent mental health problems. When compared through a test of multiple mediation, only acceptance emerged as a signicant partial mediator of the path between child problem behaviour and parent mental health problems. Conclusions: For chronic problems, psychological acceptance may be an important factor in coping for parents of youth with ASD, and may hold more explanatory power as to the processes of how behaviour problems impact parent functioning. Acceptance and commitment therapy (ACT) for parents of youth with autism spectrum disorders: Preliminary ndings Y. Lunsky (yona_lunsky@camh.net)*, K. Fung & M. Zurowski *Centre for Addiction and Mental Health, University of Toronto, Canada Aim: Raising a child with an autism spectrum disorder (ASD) is stressful to parents and can lead to signicant distress. The current study aimed to replicate the results of Blackledge and Hayes by evaluating Acceptance and Commitment therapy with parents of children with ASD from Toronto, Canada. Method: Parents of youth with ASD aged 4 to 17 participated in one 1.5 day-long ACT workshops. Ratings of psychological acceptance, depression, and anxiety prior to the workshop, and 3 months after workshop, were obtained, in addition to satisfaction ratings. Results: Of the 20 parents participating in the rst workshop, only 9 parents completed the two sets of ratings. There were no differences in ratings of acceptance or anxiety/depression over the 3 months for these parents. Results from the second group are forthcoming and will be part of the July presentation. Conclusions: Findings suggest that although some parents report benet from the ACT model of intervention, it did not lead to signicant changes in measured psychological acceptance or distress in the short term. Further research is needed with a larger sample to determine the benets of this type of approach as opposed to a more intensive mindfulness based or parenting skills based intervention.

Symposium: Mindfulness and acceptance processes and interventions in the eld of intellectual and developmental disability II Mindfulness-Based Stress Reduction for parents of children with developmental delays: A pilot study C. L. Neece (cneece@llu.edu)* *Loma Linda University, California, US Aim: Parents of children with developmental delays (DD) typically report high levels of parenting stress; however, parental stress is rarely directly addressed in interventions. The current study presents research highlighting parenting stress as a key target for intervention and examines the effectiveness of Mindfulness-Based Stress Reduction (MBSR) for parents of children with DD. Method: The MBSR study involves 100 parents of children (2.5 to 5 years) with DD. Recruitment is ongoing and currently 20 families are enrolled in the programme. Families are randomly assigned to an immediate treatment and delayed treatment group. Parenting stress is measured using the Parenting Stress Index and behavior problems are assessed with the CBCL. Results: The research indicates that parenting stress is an important risk factor for negative child outcomes including poorer child social skills (Neece & Baker, 2008), more behaviour problems (Neece, et al., in press), and an ADHD diagnosis (Baker, Neece, et al., 2010). Conclusions: The MBSR pilot study provides an experimental test of the impact of parental stress on child behaviour problems. Future analyses will examine: 1) whether MBSR leads to reductions in parenting stress, and 2) whether reductions in parenting stress are associated with subsequent reductions in child behaviour problems. Evaluation of an ACT/Mindfulness Intervention for children at developmental risk for emotion regulation difculties N. Wieland Bencuya (nwieland@ucla.edu)* & C. Neece *Department of Psychology, University of California, US Aim: A sizable percentage of adoptions in the United States are completed through the foster care system. Children who are adopted from foster care typically enter the system either at birth due to prenatal drug exposure or later in childhood due to abuse/neglect. This group can be considered at developmental risk for adjustment difculties. Children who have been adopted tend to exhibit higher levels of emotional dysregulation and behaviour problems than non-adopted children (Pollack, 2008). Method: The current study is an evaluation of a 7-week intervention based on the principles of Acceptance and Commitment Therapy (ACT) and mindfulness practices for children aged 913 adopted from foster care. The treatment incorporates ACT concepts, including contact with the present moment, acceptance, and values. Results and Conclusions: The overarching goal for the project is to determine whether this treatment is a feasible intervention for this group exhibiting or at risk for emotional dysregulation and externalizing behavior problems. The target total sample will be 30 (current total is 25; 6 girls and 19 boys) children, and data collection will be completed February 2012. Two years on:The effects of regular mindfulness sessions on women patients in a forensic learning disability ward C.Thomas (cathy.thomas@partnershipsincare.co.uk)*, J. Chilvers & A. Stanbury *Partnerships in Care Learning Disabilities Services, Diss, Norfolk, UK Aim: To investigate the ongoing effects of mindfulness sessions on women residents of a Forensic Learning Disability medium secure ward. Mindfulness was introduced on the ward in the form of twice-weekly 30 minute open group sessions in November 2009. This study investigated the effect of these sessions two years on. Method: Intervention data were collected on all the original participants until November 2011, or until discharge if sooner. All those still resident in November 2011 were interviewed on their views on mindfulness. Observations were made on the ward to ascertain the understanding and use of mindfulness. Results: Preliminary analysis of the intervention data suggests that participants maintained or increased their ability to manage their arousal safely. All the original participants showed knowledge of mindfulness. They also expressed considerable enthusiasm for using it, running sessions, and teaching new patients. Ward observations conrmed wide spontaneous use of mindfulness on the ward. Conclusions: Mindfulness has had a positive effect on the participants and is being used regularly by them to safely manage their thoughts, feelings and behaviour.
Symposium: Inter-professional roles and training Mental health treatment in intellectual disability and psychiatric disorders: Social workers perspective S. Werner (shirlior@mscc.huji.ac.il)* *Hebrew University of Jersualem, Israel Aim: Working with persons with a dual diagnosis (DD) of intellectual disability and psychiatric disorders requires extensive knowledge and training, especially to deal with challenging behaviors. Social workers are often at the forefront of accessing mental health (MH) services for their clients. The current study examined social workers training and knowledge in DD and their opinions regarding MH treatment provided to these individuals. Method: A convenience sample of 102 social workers completed a self-administered questionnaire. Results: Only 19% of the participants reported receiving specic training in DD. Over 60% reported experiencing problems in the delivery of MH services for this population, including lack of knowledge, prejudice and under-skilled personnel. Participants agreed that people with DD are vulnerable to exploitation by other patients in psychiatric departments (92.5%), that insufcient psychiatric services may lead to inappropriate prescription of anti-psychotic medicines (87.5%), and that people with DD do not get adequate service from MH (60.8%) or social work (68%) services. Conclusions: We recommend the development of advanced training for MH professionals in order to implement the requirements of the UN Convention of the Rights of Individuals with Disabilities and provide adequate MH treatment to this population. Whos Challenging Who?: Evaluation of training delivered by individuals with a learning disability and challenging behaviour L. Hutchinson (lisa.hutchinson@mencap.org.uk)*, R. P. Hastings, P. Hunt, M. Banks & C. Bowler *IDDRG, Bangor University,Wales, UK Aim: Training staff about challenging behaviour has focused on behavioural skills and the beliefs/attributions they hold. This research developed a training course, Whos Challenging Who? (WCW), which focuses on the perspectives of individuals with learning disabilities (LD) about what it is like to have challenging behaviour. Method: WCW was informed by a systematic review of existing research on the experiences of individuals with challenging behaviour, and also direct input from people with LD. A manual for training trainers with LD was developed. For the evaluation project, a pre-post test design measured staff attitudes, perceptions, and empathy towards people with challenging behaviour. Post-training satisfaction data were also gathered. Results: Qualitative feedback regarding the WCW training content and delivery from two pilot sessions was very positive. One training course for 9 participants has been completed. A further 9 training events are timetabled between November 2011 and January 2012. A minimum of 73 staff are expected to attend. Pre-post evaluation data will be presented at the conference. Conclusions: Pilot data support the proof of principle for WCW. Adults with challenging behaviour can be supported successfully to act as co-trainers to present their experiences. Practical challenges of the WCW training approach will be discussed. Who does what? Identifying professional contributions in an inter-professional context R. Northway (rnorthwa@glam.ac.uk)* & S. McMillan *University of Glamorgan,Wales, UK Aim: Nurses working with people with intellectual disabilities (ID) are increasingly expected to provide evidence of effectiveness in relation to their interventions. However, meeting the needs of people with ID who have complex behavioural support needs often requires multi-professional interventions. A tension may thus arise. The aim is therefore to examine the extent to which it is possible to determine the contribution of nurses to meeting the needs of people with ID whose behaviour challenges. Method: A meta-search of 4 databases (Cinahl, Medline, PsycInfo and Assia) was undertaken using the search terms intellectual disability nursing + challenging behaviour and learning disability nursing + challenging behaviour. Results: The rst search identied 36 records and the second identied 78. When duplicates and papers which did not clearly identify a nursing contribution (either as author or participant) were excluded only 33 papers remained. These included papers focusing on the impact of challenging behaviour on staff, staff attitudes, and discussion papers. Identifying a specic nursing contribution was difcult in some reports. Conclusions: The multi-professional support required by people whose behaviour challenges may limit the extent to which it is possible to demonstrate an evidence base for the practice of individual professionals.

Symposium: Effective interventions for clients with mild intellectual disabilities and behaviour problems Effectiveness of a parent-child intervention for children with MBID and externalizing problem behaviour H. Schuiringa (H.Schuiringa@uu.nl)*, M. van Nieuwenhuijzen, B. Orobio de Castro & W. Matthys *Utrecht University, Developmental Psychology, Netherlands Aim: No evidence-based interventions exist for children with mild to borderline intellectual disabilities (MBID) and behaviour problems. Therefore, a training course adapted to the needs of children with MBID was developed. Standing Strong Together (SST) is a manualized cognitive parent-child group intervention that intervenes on parenting and social information processing. We tested whether this intervention was effective in reducing externalizing behaviour problems. Method: The study sample (N = 170) was derived from the population of children aged 916 who were being treated for behaviour problems and MBID in Dutch day care settings. The participants took part in a cluster-randomised trial. Data were collected using a multi-method, multi-informant (children, parents and teachers) approach, measuring parents parenting skills and the childs behavior through questionnaires and problem solving tasks. Results and Conclusions: Data collection will be nished in the upcoming month, and will provide us with the data to report on SSTs effectiveness with 170 families (pre- and post-test) and effectiveness at a one year follow-up (N = 90) at the IASSID Congress in July 2012. Training emotional intelligence related to treatment skills of staff working with clients with intellectual disabilities and challenging behaviour L. Zijlmans (l.j.m.zijlmans@uvt.nl)*, P. Embregts, A. Bosman, L. Gerits & J. Derksen *Tilburg University, Netherlands Aim: Emotional intelligence inuences the behaviour of direct-care staff for people with intellectual disabilities (ID) and challenging behaviour. The aim of the present study was to assess the effectiveness of a staff intervention focusing on emotional intelligence. Method: The Bar-On EQ-i was used to measure emotional intelligence. To determine whether emotional intelligence of staff had improved after completion of the training program, the experimenter developed a system that instructed trainers specialized in EQ-i how to judge pre- and post-test scores. The system consisted of three categories: scores changed desirably, scores changed unfavorably, and unchanged scores. Results: The emotional intelligence of the experimental group changed signicantly more than that of the control group. Judgments of experts on emotional intelligence indicated that the emotional intelligence of the experimental group improved positively. Conclusions: The positive effect of the training program on emotional intelligence suggests that emotional intelligence of staff working with clients with ID and challenging behaviour can be inuenced by training. Quality, safety and effectiveness of treatment with psychotropic drugs in children and adults with mild intellectual disabilities A. Scheifes (a.scheifes@uu.nl)*, R. Heerdink, J. J. Stolker, H. Nijman & T. Egberts *University of Utrecht, Netherlands Aim: Psychiatric and behavioural disorders are more common in adults and children with mild intellectual disabilities (MID) than in the general population. Psychotropic drugs are frequently used without sufcient evidence of effectiveness or safety among this population. The aim of this study was to determine the prevalence, effectiveness, safety, and quality of treatment with psychotropic drugs in children and adults with MID and behavioural problems admitted to treatment centres. Method: An observational study on adverse effects (e.g. movement disorders) of psychotropic drugs was performed. Movement disorders were assessed with the Abnormal Involuntary Movement Scale (dyskinesia), the Barnes Akathisia Rating Scale (akathisia), the Unied Parkinson Disease Rating Scale (parkinsonism) and one separate item for dystonia. The observational study was followed up by an intervention aimed to improve treatment with psychotropic drugs. The intervention included the structured review of medication, formulation of a pharmaceutical care plan, and monitoring and follow up. Results: In the observational study 130 patients were included. For the pharmacotherapy review the medication of 55 patients was reviewed. Preliminary results indicate that almost all patients had medication-related problems. More results will be presented. Conclusions: Implications for this data are discussed.
Symposium: Attachment and attachment disorders: Assessment and treatment Disordered social behavior in children with (mild) intellectual disability: Diagnostic distinctions between autism and disordered attachment H. P. Giltaij (hgiltaij@bartimeus.nl)*, C. Schuengel & P. S. Sterkenburg *Bartimeus Doorn,VU University Amsterdam, Netherlands Aim: Among children with a mild or borderline intellectual disability referred for psychiatric assessment, problematic social functioning occurs that ts criteria for autism spectrum disorder (ASD) and/or reactive attachment disorder (RAD). Confusion exists as to whether these disorders should be dened as mutually exclusive or may co-occur. Therefore, associations between symptoms and associated factors were examined. Method: The participant group of 102 children (IQ 5085; age 511 years) had been referred to a psychiatrist for psychiatric consultation. Symptoms of RAD were assessed with the Disturbances of Attachment Interview (Smyke & Zeanah, 2002), symptoms of ASD with the Auti-R (BerckelaerOnnes et al., 1990). Associated factors were coded from childrens clinical les. Results and Conclusions: Results indicated that screening for RAD and for ASD as distinguishable disorders is possible. Children with RAD may also be diagnosed with ASD. No association (r = .001) was found between total DAI score (M = 3.2, SD = 2.8) and Auti-R score (M = 263.7, SD = 47.0), nor among the subscales. 38.2% of the children showed behaviour indicating RAD and 27.5% ASD/borderline-ASD. The Chi-Square test showed no higher risk for RAD in children with ASD (χ2 = .018). Background adversity was associated with positive screening of RAD and not with positive screening of ASD. Using mobile technology to support relationship development and emotional well-being: A case study W. den Brok (w.l.j.e.den.brok@vu.nl)*, P. Sterkenburg & C. Schuengel *Bartimeus Doorn,VU University Amsterdam, Netherlands Aim: Prevalence studies indicate that separation anxiety among children with intellectual disabilities (ID) is four times higher than among the nonID peers. The absence of mental representations, person permanence, may be the cause of fear and separation anxiety and a precursor of challenging behaviour and psychopathology. Failing to treat separation anxiety may place a burden on the caregiving system because it may maintain or increase challenging behaviour. This study assessed the effect of the implementation of mobile technology and the response of the caregiver at reunion. Method: A multi-phase design (ABCBC) with a post-test. The participant is an adult living in a group home for persons with a visual disability and ID. Relevant scales from PIMRA, SRZ/SRZi, Honos -LD, ABCL, SBSHO, BSI and IDQL are used to examine the effect on quality of life, distress, loneliness, challenging behaviour, and well-being. In addition, daily scored observation lists and the emotional messages sent are examined. Results: Results indicated less anxiety, fewer feelings of loneliness, fewer problem behaviors and a greater sense of wellbeing. Conclusions: The use of mobile technology gives persons with a visual and intellectual disability the opportunity to benet from modern technology to support relationship development and well-being. Guideline for mentalisation-based treatment for children with problematic attachment with visual and/or ID F. Dekker (fdekker@bartimeus.nl)* *Bartimeus, Doorn, Netherlands Aim: Treatment of children with attachment disorders is a great challenge for professional caregivers. Mentalisation-based treatment is an evidencebased method for clients with a borderline personality disorder and is also applied for children with problematic attachment. Until now there is no practical mentalisation-based caregiving guidebook for professionals providing care for persons with an intellectual disability. Method: A practical guideline for treatment and counseling has been developed for caregivers, teachers and parents based on frequent workshops for teams of professionals who work with clients with a visual disability and/or ID. Results: Mentalisation-based treatment helps to reduce the level of stress, to regulate emotions and stay in contact with the child. It enhances the level of sensitivity of the caregiver and with their coping with challenging behaviour. Conclusions: Giving concrete tools for caregivers to cope with the challenging behavior of clients with disabilities is a great help.

Symposium: Behaviour interventions A guideline towards more effective interventions for youth with mild intellectual disabilities J. Douma (j.douma@lvgnet.nl)*, M. de Wit & X. Moonen *Dutch Knowledge Centre on Mild Intellectual Disabilities,Netherlands Aim: Many youth with mild intellectual disabilities (MID) have socioemotional or behavioral problems. Although treatment is warranted, only a few interventions are specically developed for them. Subsequently, interventions for typically-developing youth are frequently used. Even though treatment success can only be enhanced when interventions are adapted to MID specic characteristics, knowledge about these characteristics and how to adapt to them in interventions is scarce. Our aim was to develop a guideline with recommendations regarding the development, adaptation and implementation of behavioral interventions for youth with MID. Method: An extensive literature study was carried out, followed by in-depth interviews with experts in the eld on MID characteristics and associated treatment adaptations. Finally, the guideline was evaluated by a panel of different experts. Results: The Guideline for Effective Interventions MID was constructed. It contains information about specic MID characteristics (e.g. related to working memory, problem solving skills and the transfer of what is learned to different situations) and six broad categories of adaptations to interventions (e.g. regarding communication, social network, and a safe and positive treatment environment). Conclusions: This guideline should help to increase the success of behavioral interventions used with youth with MID. MST -MID: Multi System Therapy for people with mild intellectual disability K. De Vuijst (VuystK@prismanet.nl)* *Prisma Foundation for People with ID, Netherlands Aim: MST-MID aims at offending, anti-social, and oppositional behaviour in youngsters aged 1218 with mild and borderline intellectual disability. Method: While Multi System Therapy is an evidence-based therapy for youngsters with offending, anti-social, and oppositional behaviour, we are adapting this therapy for youth between 1214 years of age with offending, anti-social, and oppositional behaviour who have an intellectual disability (MID/BID) and social impairment. The principles of MST are used, with a goal to empower youth and parents with the skills and resources needed to independently address their difculties and cope with their complex environmental and social problems. The focus is on all systems: parents, school, family, neighbourhood, police, and social work. The adaptation describes the specic support that is needed. A pilot study has started in order to gain a better understanding of the kind of adaptations required and how to reach the effectiveness of regular MST. Results: Evaluations show that youngsters with MID/BID demonstrating antisocial, oppositional and offending behaviour improve their status by less CB, attending school and/or work, and create less social problems. Conclusions: These ndings support and extend the use of system-oriented approaches in interventions, specically in heavy or intense CB and MID/BID. Evaluating program implementation: Description of behavioral intervention offered to young children with autism in Quebec J. Joly (Jacques.Joly@usherbrooke.ca)*, C. Dionne, A. Paquet & M. Rivard *Universit de Sherbrooke, Quebec, Canada Aim: In the context of Quebec services, early intensive behavioral intervention (EIBI) is offered by readaptation centers to children with autism spectrum disorders (ASD) between 2 and 5 years old (MSSS, 2003). A study documented the diversity of application of EIBI across 6 of those centers (Gamache, Joly & Dionne, 2011). The aim of the present research project is to document more precisely how those EIBI programs are conceived and implemented in each readaptation center. The purpose of this communication is to present preliminary results of the rst year of this project. Method: To document the implementation of EIBI in Quebec, we propose a research design based on the theory of the program (based on Chens model). We recruited participants from 17 readaptation centers across Quebec. Information about implementation is obtained by questionnaires, interview with staff members (clinicians and managers) and document analysis. Results: Preliminary results will be presented by main components of the questionnaire (intervention and service delivery protocols, organization/community partners, target population, implementing organizations, program implementers, ecological context). Conclusion: Next stages of the research project will be presented.
Symposium: Down syndrome: Behaviour and mental health A longitudinal analysis of the prevalence and course of behaviour problems within a cohort with Down syndrome D. Couzens (d.couzens@uq.edu.au)* & M. Cuskelly *The University of Queensland, Australia Aim: Research aims were to identify the existence and change in problematic behaviours from early childhood to adulthood for a group of individuals with Down syndrome. Individual differences related to stability, and the compounding of early behaviours were explored. Method: Participants, born between 1973 and 1978, were part of the longitudinal Down syndrome research program at the University of Queensland. The behaviour assessment of the ABS: Part 2 (AAMD) had been collected across the age span 6 years to 35 years. Behaviours identied for each age assessed were entered into an ACCESS database. Descriptive analyses of these data were performed using SPSS. Sample cases were identied to demonstrate differences in trajectories for individuals within the group. Results: While problem behaviours overall were low, a number of individuals in the cohort were identied with a signicant number of behaviours. Descriptive data demonstrates group trends and individual differences in behaviour stability and change in relation to individuals identied with behaviour challenges as adults. Conclusions: Generally, individuals with Down syndrome demonstrate low levels of problem behaviour or temporary issues. Identifying patterns of behaviour, however, that may be indicative of risk to adult wellbeing is important to the development of targeted preventative interventions. Behaviour changes over ve years for young adults with Down syndrome transitioning from school to post-school K.-R. Foley (kittyf@our.ecu.edu.au)*, S. Girdler, J. Bourke & H. Leonard *School of Exercise, Biomedical and Health Sciences, Edith Cowan University, Perth, Australia Aim: To describe behaviour changes over ve years for young adults with Down syndrome and investigate impact on post-school day occupations. Method: Questionnaires were sent to families in the Down syndrome NOW database in 2004 and 2009. Questionnaires included two parts: part one addressed young person functioning and part two, family functioning. The Developmental Behaviour Checklist was used to measure behaviour at two time-points. Results: Families of 134 young people with Down syndrome aged 1024 years in 2004 completed the DBC in 2004 and 2009. The mean score of the DBC administered in 2004 was 18.35, SD 12.54; and, in 2009, was 14.29, SD 10.75. Overall, in 95 (70.9%) behaviour was reported to improve and in 39 (29.1%) to deteriorate. For all age groups there was a decrease in behaviour score with time indicating an improvement in behaviour. This difference was greatest in the 1013 (mean change = 4.78) and 1924 (mean change = 4.92) and least in the 1418 (mean change = 2.43) year old age-groups in 2004. Conclusion: Overall, young peoples behaviour improved over the ve year period, with the middle age-group improving the least. Further analysis will identify if behaviour is a predictor of post-school day occupations. A survey of well-being and mental health in adults with Down syndrome S. Glenn (s.m.glenn@ljmu.ac.uk)*,V. Prasher, S. Glenn, C. Cunningham & P. Glenholmes *Liverpool John Moores University, UK Aim: The aim of the study was to determine the frequency of mental health problems in an urban sample of adults with Down syndrome aged between 20 and 40 years. This is an age at which there is relatively little research. Method: Participants: 130 individuals with Down syndrome (65 males, 65 females, average age 30.5 years) were recruited from a large city in England. All individuals had a standard psychiatric interview using the ICD-10. In addition they had independent assessments of verbal mental age (VMA), physical health, SDQ (Goodman, 1997), and routinized/ compulsive behaviour, together with an interview concerning the persons life, including leisure, work, family, friends and wishes for the future. Results: Twenty three percent (23%) of the sample received current diagnoses, including depression, personality disorder, OCD, autism and somatoform disorder, with 1 diagnosis of dementia; only a minority were receiving treatment. A further 10% were found to be already on psychiatric medication. The majority (60%) of participants were rated to be in good physical health; there was no relationship between physical and mental health. Conclusions: Associations between mental health status and other assessments will be reported.

Symposium: Persons with ID facing the criminal justice system I Persons with ID facing the criminal justice system R. Proulx (renee.proulx@crditedmtl.ca)*, A. Crocker & N. Lennox *Centre de radaptation en dcience intellectuelle et troubles envahissants du dveloppement de Montral, Qubec, Canada Aim: This symposium will bring together research teams from Canada and Australia to address key issues concerning ID in the criminal justice system, namely assessment, intervention practices, health outcomes, and vulnerabilities of persons with ID. Following the presentations, an interactive discussion will take place. Method: First, research results stemming from both the above mentioned quantitative and qualitative studies will be discussed according to three main issues: (1) analysis and comparison of prevalence and characteristics of prisoners with ID in Canadian and Australian contexts; (2) methods and tools for assessing ID in closed settings; (3) barriers to services and social reintegration. Second, we will present developments and results of intersectoral research initiatives in practice settings as well as innovative knowledge transfer tools and programs. Results and Conclusions: The results call for more research and practice alliances in order to sustain and stimulate promising initiatives and courses of action, as well as to elaborate policy and practice guidelines. Rates and correlates of intellectual disability in a Canadian prison A. Crocker (anne.crocker@mcgill.ca)*, G. Ct, D. Farthing, M. Daigle & J.Toupin *Department of Psychiatry, McGill University, Quebec, Canada Aim: In Canada, there is no systematic assessment of intellectual functioning and few specialized programs for individuals with intellectual disabilities (ID). The goal of the present study is to identify the prevalence and characteristics of individuals with and without signicant intellectual decits in a sample of male offenders. Method: A random sample of recently-sentenced male inmates (N = 534) admitted to a federal correctional facility in Qubec (Canada) were invited to interviews which involved an in-depth assessment of mental health, IQ and adaptive behaviour. Results: Preliminary analyses show that the most frequent reasons for sentencing are theft or robbery (28.5%), drug-related offenses (23.6%), sexual offense (15.4%) and assault (13.6%). Nearly one in ve male inmates has an estimated IQ below 75 using a screening method (18.1%); the rate drops to 12% with the full WAIS. However, the assessment of adaptive behaviour poses signicant problems in closed settings such as prisons and the criteria related to appearance of IQ decits before the age of 18 is rarely known. Conclusions: Results are discussed in relation to the international literature on the prevalence of ID among offenders, difculties in the assessment of ID in prisons, and service and assessment needs in correctional systems. Intellectual disabilities and pervasive developmental disorders in the criminal justice system: Repertory of innovative practices and initiatives R. Proulx (renee.proulx@crditedmtl.ca)*, G. Ouellet, O. Corbin-Charland & J.-P. Gagnon *Centre de radaptation en dcience intellectuelle et troubles envahissants du dveloppement de Montral, Qubec, Canada Aim: With the social participation of people with ID/PDD comes the possibility of contacts with the criminal justice system. Even if mental health/ criminal justice initiatives have been numerous and well-documented, practitioners and decision-makers often report a lack of tools and references specically tailored for people with ID/PDD. Method: A review of documents and websites, based on an inductive method, complemented by a snowball approach, was used to create a database of programs, services, reports, tools and innovative practices published on the web. It is designed to evolve with the incorporation of new resources as they are published online or come to the attention of the team following suggestions from the users. Results: The database was transformed into a website containing short descriptions of the initiatives with links to the relevant documents (PDFs, websites, etc.). A search engine and various sections allow the user to navigate by keywords, topic (offender, victim, etc.) or type of document (guide, program, etc.). Conclusions: The website is a knowledge transfer tool readily-accessible to people concerned with the issue. It will be used in various research activities and the documents it contains will be subjected to evaluation through the Delphi method (panel of experts).
Symposium: Symposium: Persons with ID facing the criminal justice system II Research-oriented initiatives and knowledge transfer around ID/PDD and criminal justice issues R. Proulx (renee.proulx@crditedmtl.ca)*, D. Morin, G. Ouellet & O. Corbin-Charland *Centre de readaptation en decience intellectuelle et troubles envahissants du developpement de Montreal, Qubec, Canada Aim: Stemming from previous projects, the CRDITED de Montral, in collaboration with the ID, PDD and Intersectorality research team, is launching numerous initiatives to address ID/PDD and criminal justice issues. Method: Previous research indicates that the actors goodwill isnt enough to overcome the obstacles engendered by the various organisations conicting mandates and cultures. So as to circumvent these difculties, the CRDITED de Montral is developing a research program and several knowledge transfer activities. These are divided in four intertwined stages: (1) adopting a reference framework to espouse a shared comprehension of the situation, (2) establish a data collecting process to build a typology from actual cases, (3) call upon various partners to participate in intersectoral workshops in order to confront their different visions and increase collaboration, and (4) solicit researchers and practitioners to help select promising initiatives and courses of action. Results: This program will play an essential role in the creation of a community of practice that will ensure an adequate handling of people with ID-PDD confronted with the CJS. Conclusions: Elaborating policy and practice guidelines will require a broad but detailed comprehension of the issue, and will only succeed through sustained collaboration and rigorous methodological approaches.
Physical health outcomes in prisoners with intellectual disability: A cross-sectional study S. Dias, S.A. Kinner, R. Ware & N. Lennox (n.lennox@uq.edu.au)* *University of Queensland, Australia Aim: People with intellectual disability (ID) in the general population experience some of the same adverse health outcomes as prisoners, including unrecognized medical conditions and inadequate disease prevention. Among prisoners, those with ID may therefore be doubly disadvantaged. The aims of this study were to identify demographic, health and health-related correlates of ID in adult prisoners in Queensland, Australia. Method: Data were collected from adult prisoners via faceto-face questionnaires prior to their release from custody from seven prisons in Queensland. People were included based on a screening test and their history of attendance at a special school or past diagnosis of ID. We compared prisoners with and without ID on demographic, health, and health-related correlates, using logistic regression. Results: Younger age, identifying as Indigenous, and lower education were associated with increased risk of ID. Prisoners with ID were more likely to have been diagnosed with a range of medical conditions, less likely to have been the target of testing and screening for infectious disease and immunizations, and had a two-fold increase in risk of obesity in contrast to their nonintellectually disabled peers. Conclusions: Prisoners with ID have worse health outcomes prior to release than the mainstream prison population.

Symposium:Triple C:Treatment of extreme challenging behaviour: Client experience, managing the model & research Triple-C in a birds eye view:The assumptions and how to organize them W. van Hees (wvhees@asvz.nl)* & M. van der Ent *ASVZ, Netherlands The Cs in Triple-C stand for Client, Coach and Competence. Triple-C is a different way of approaching clients with behavioural problems. Pillars are unconditional support, meaningful daytime activities and no focus on the problematic behaviour. Triple-C is based upon attachment theory and behavioural theory. Successfully implementing the treatment requires special cultural and multidiciplinary conditions in the organization. In this presentation the treatment and its conditions as well as the impact on the organization will be explained. Triple-C: My personal experience being treated. Expanding quality of life M. Fokker (mfokker@asvz.nl)* *ASVZ, Netherlands A young woman lies tied to her bed. She only weighs 35 kilograms. Her arms are tied above her head. In her nose she has a feeding tube. Psychologists and doctors are desperate. She is not eating, is aggressive and suicidal. Two years later she travels by bike to her work. She eats. And she runs with 3000 other women the Ladies Run through Rotterdam. What happened to Mirjam Fokker? Im in the middle of the biggest change ever. A personal story from a client with autism spectrum disorder and severe behavioral problems. She describes her experiences with mental health care and the impact of several kinds of treatments that didnt cause any effect at all. After being treated acoording to Triple-C assumptions she describes the changes in her quality of life. Triple C: Researching the effects of treatment H. van Wouwe (hvwouwe@asvz.nl)* *ASVZ, Netherlands Aim: Triple-C is a clinical treatment model for people with intellectual disabilities (ID) and extreme challenging behaviour. The model focuses on the relation with the client as well as on his competencies. In this study the emphasis is on adolescents and young adults. This longitudinal study aims to describe the effects of Triple-C treatment (measured with the Triple-C Index) on several characteristics of clients, such as adaptive behaviour and problem behaviour. Method: Using the Triple-C Index, 52 clients are classied as being treated more or less adequately with our model. At the same time those clients are assessed on competencies and problems. There are 3 baseline measurements and 4 follow-ups. Subsequently, correlations are measured between the Triple-C treatment and client characteristics. Results and Conclusions: We expect to nd that Triple-C shows to be a successful treatment model for clients with ID and extreme challenging behaviour.
Symposium: Working with offenders with ID A screening for risk for violence for offenders with ID W. Lindsay (billlindsay@castlebeck.com)*, S.Tinsley, R. Hastings, S. Fitzgerald, N .Grey & R. Snowdon *Castlebeck, University of Abertay Dundee, Bangor University,Wales Aim: Over the last seven years there has been an increasing amount of research on risk assessment for offenders with ID. Correspondingly, there has been an increasing clinical demand for reliable, valid risk assessment. Currently, the demand outstrips the availability of trained, skilled assessors. This research aims to identify variables that may constitute a screening for risk that can be completed quickly by staff untrained in risk assessment. Method: Prior study was conducted (Fitzgerald et al 2011, Fitzgerald 2008), reviewing a range of variables individually associated with reoffending. Eight variables emerged from this analysis with strong statistical associations with future incidents. These were incorporated into a screening. Twenty (20) participants were included in this pilot study. Because it was a short term pilot, a proxy (police involvement) was used for serious violence. Results: Four variables were strongly associated with police involvement, two were moderately associated, and two were not signicant. Since all participants had engaged in previous violence, previous violence did not emerge as a predictor. Taken together, these signicant variables were highly predictive of police involvement. Conclusions: The results of this pilot study suggest that it may be possible to identify those individuals who require a more extensive risk assessment. How do static and dynamic risk factors work together to predict reoffending amongst offenders with ID? R. Lofthouse (rachaelclarkson@yahoo.co.uk)*, W. Lindsay,V.Totsika & R. Hastings *Bangor University,Wales Aim: The aim of this study is to explore conceptually how static and dynamic risk factors work together to predict violent reoffending in adults with intellectual disabilities. Method: A methodological approach developed by Kraemer et al. (2001) was used to investigate the interaction between static and dynamic risk. Three assessments were used: one actuarial the Violence Risk Appraisal Guide (VRAG) (Quinsey, et al., 1998), and two dynamic measures Emotional Problems Scale (EPS) (Prout & Strohmer, 1991) and the Short Dynamic Risk Scale (SDRS) (Quinsey, 2004). Data from 212 offenders with ID are analysed. Results: Examining the competing models proposed by Kraemer et al. (2001), the analyses suggested that dynamic risks act as proxy risk factors for static risk. In support of this, the static tool has temporal precedence, there was a nonzero relationship between the static and the two dynamic scales, and the static tool dominated the two dynamic tools. Conclusion: Alongside data suggesting that dynamic risk tools better predict recidivism than static, if future research conrms our ndings that dynamic risk variables are proxy risk factors for static, this will have important implications for practice. Offenders with intellectual disabilities and subjective well-being (SWB) from arrest to court B. Lindsay (billlindsay@castlebeck.com)*, S. Halpen, W. Lindsay & D. Carson *Castlebeck, Abertay University, Dundee, Bangor University,Wales Aim: This study examined subjective well-being (SWB) and psychological status of offenders as a function of their experiences from arrest through to court proceedings. SWB is dened here as the subjective evaluation of ones own experiences and quality of life. Recent research suggests that engaging with, and committing to, societal values is important in treatment plans for offenders. Capturing the experience of offenders with intellectual disabilities, from committing the offence through to their court appearance, may benet treatment plan development. Method: Testing occurred with 33 offenders referred over a six year period as part of standard court assessments. Participants completed an SWB evaluation and the Brief Symptom Inventory, which were analysed for correlates and predictive value. Results: Offenders reported signicant reductions in SWB following arrest. Signicant correlations included an associate between the type of charge and how the offender felt about the crime, being published in papers, and appearing in court. Appearing in court was also correlated with interpersonal sensitivity. Conclusions: These ndings highlight the importance of SWB in understanding the experiences of offenders with intellectual disabilities. Ways in which SWB can be used in treatment are discussed.

Symposium: Pathways through offender services Pathways into services for offenders with intellectual disabilities W. Lindsay (billlindsay@castlebeck.com)*, A. Holland, D. Carson, J.Taylor & J. Wheeler *Castlebeck, Abertay University, Dundee, Bangor University,Wales Aim: The patterns and pathways into intellectual disability (ID) offender services were studied, through case le review for 477 participants referred in one calendar year to community generic, community forensic, low/ medium and maximum secure services. Method: Data were gathered on referral source, demographic information, index behaviour, prior problem behaviours, diagnostic information and abuse/deprivation. Results: Community referers tended to refer to community services and secure service referers to secure services. Physical and verbal violence were the most frequent index behaviours, while contact sexual offences were more prominent in maximum security. Age at rst incident varied with security with the youngest in maximum secure services. ADHD/ conduct disorder was the most frequently-recorded diagnosis, while severe deprivation was the most frequent adverse developmental experience. Fire starting, theft, and road trafc offences did not feature prominently. Conclusions: Generic community services accept a number of referrals with forensic-type behaviour and have higher proportions of people with moderate /severe ID and women. Responsivity to criminogenic need in forensic intellectual disability services W. Lindsay (billlindsay@castlebeck.com)*, D. Carson, A. Holland, J.Taylor, G. OBrien, J. Wheeler & L. Steptoe *Castlebeck, Abertay University, Dundee, Bangor University,Wales Aim: Andrews et al. (1990) discussed principles to guide effective assessment and treatment of offenders: risk and responsivity to need. Recent research on offenders with intellectual disabilities (ID) has shown the most prevalent index behaviour is violence, followed by sexual offences, vandalism, and alcohol/substance misuse (Alexander et al., 2010; Lindsay et al., 2010; Lunsky et al., 2011). For at least the rst two of these difculties, there are experimentally-validated treatments. Method: Participants comprised 168 males and 29 females accepted into community and secure forensics ID services and were followed up for the subsequent two years. We will present treatment delivered in relation to the index offences. Results: Of 75 participants referred with an index problem of violence, 27 (36%) participants received anger treatment. Of 62 participants referred for sexual offences, 34 (55%), received sex offender treatment. Those who received treatment were in community forensic ID or acute inpatient services. Conclusions: Data suggested that lack of treatment in secure settings may have been due to the presence of co-morbidities, not stafng levels. Treatment services have been less than optimum in response to the most frequently-referred problems of violence and sexual offending. We will discuss possible reasons for difculties in treatment provision. Pathways through services for offenders with intellectual disability: One- and two-year follow up A. Holland (billlindsay@castlebeck.com)*, J. Wheeler, W. Lindsay, D. Carson, J.Taylor & G. OBrien *University of Cambridge, UK Aim: This study reviews the pathway through services for offenders with intellectual disability (ID). Method: Participants were 197 offenders with ID accepted into 3 types of community and 3 types of secure forensic ID services. They were rst compared with 280 participants referred but not accepted into services and were then followed up for two years to review pathways through services. Results and Conclusions: Those accepted into services had a higher charge rate (46%) than those referred (25%). The greatest diversity in pathway was seen in participants in community forensic ID and in-patient services. Individuals in secure settings showed the least diversity over time and, similarly, a relatively high percentage of those accepted into generic community services remain in these services.
Symposium: Optimal use of clinical resources at a time of nancial restraint and increasing demands Difculties for multidisciplinary teams treating ID persons to reach consensus around the use of medication P. Sanhueza (pablo.laaurora@gmail.com)*, M. Dear, H. Coombs & J. Nixon *Developmental Disability Service, North Bay Regional Health Centre, Ontario, Canada Aim: To explore in a retrospective analysis the medication prescribed to patients, their effectiveness and side effects, our recommendations, and the reasons for care providers to resist a more sound pharmacological approach. Method: Information was gathered from patients and pharmacy records. Number of drugs, treatment duration, likely benet and side effects, target symptoms and response to medication changes were collected. The reaction of staff or relatives to recommended adjustments had been recorded in our clinical notes. Strategies to reassure them were discussed during supervision. Results: Over time we have been able to balance risk, benet and effort involved in reducing medication. For reasons that we will discuss care providers rely on medication as the most relevant therapeutic action. Pre-conditions for medication adjustment include reassurance about prompt response to untoward reactions, validation of staff clinical skills, identication of target symptoms, appropriate validation of medical conditions, and enhancement of non-pharmacological therapies. Conclusions: Our team has achieved a unied and condent view of the benets and risks related to medication adjustments that has allowed us to rationalize treatment options, to increase staff easiness and improve patients level of functioning. Management of clinical crisis situations with limited resources and creative solutions H. Coombs (hcoombs@mpscmhs.on.ca)* *Muskoka Parry Sound Community Mental Health Service; North Bay Regional Health Centre, Canada Aim: To identify issues to help prevent and effectively handle crisis situations in patients homes , thereby decreasing the need for hospital admissions and legal involvement. Method: Retrospective review of crisis situations involving patients during the past 5 years. Genesis of the crisis, perceived severity and need for immediate action as well as recommendations and outcomes were evaluated. Intervention were decided in ad hoc supervision sessions and based on protocols developed with care providers. Results: Crisis likely originated in actual or imminent violence, patients rapid clinical deterioration, and medical conditions. The perception of crisis severity was uneven across staff. Increase of psychotropic medication was frequently requested. Staff acceptance of our recommendations increased as we were viewed as reliable professionals. In group homes the role of the manager was a signicant variable. Currently, crisis situations are far between and care providers feel condent taking the initial actions before bringing the matter to our attention. Conclusion: The effectiveness and credibility of our team in crisis situations has increased as result of patient and systematic review of the problem with care providers and clients. Proper collaboration with agencies reduces nancial cost while improving clinical care J. Nixon (jay@cmhassm.com)*, H. Coombs, M. Dear & P. Sanhueza *Canadian Mental Health Association Sault Ste. Marie,, Canada Aim: To identify factors leading to effective collaboration between service and community agencies and its impact on patients care, the situations that hinder the collaboration, and the cost-benet resulting from prevention of crisis, patients autonomy, and reduction of medication. Method: Evaluation of consultations over 5 years, number of patients served, total number and frequency of the visits, and indicators of successful, meaningless, and counterproductive recommendations. Results: Our semi-quantitative analysis indicates that agencies increasingly request our services and the overall level of satisfaction is high. Indicators of positive collaboration include the joint elaboration of treatment protocols, the degree of concordance among staff, the provision of educational sessions, the commitment of the home or agency manager, the patients involvement in the consultation process, and the patients level of functioning. Negative indicators were institutional and political instability, weak leadership, unrecognized serious clinical conditions, and entrenched approaches to care. Conclusions: Community resources represent the strongest source of support available. If one is prepared to learn from the mistakes, provide patient-centered care, and work in true partnership, patients conditions consistently improve.

Symposium: Dual diagnosis A decade of dual diagnosis consultation outreach: Review of matching service and recommendations to ongoing change in a clinical population S. Farrell (susan.farrell@rohcg.on.ca)* & D. Lougheed *Royal Ottawa Health Care Group, Ontario, Canada Aim: The Dual Diagnosis Consultation Outreach Team (DDCOT) of the Royal Ottawa Health Care Group is a specialized, multi-disciplinary consultation team that provides assessments for adults with developmental delay and mental illness. Developed 10 years ago, the team serves individuals with a range of delay from mild to profound. A range of Axis I and II disorders are seen in community and inpatient settings. Disciplines on the team include psychiatry, psychology, nursing, occupational therapy, speech language pathology and social work. Method: By review of comprehensive clinical and service data collected on 1254 individuals served, this oral presentation will provide details on 3 foci of the team model: (1) the clinical correlates of Axis I and II diagnoses in a community dual diagnosis sample and the change in clinical presentation over time, (2) the use of a consultation model of service delivery and its merits and limitations to care for the individuals served, and (3) factor analytic review and development of a typology of the recommendations provided within the consultation process and the correlation of recommendation type to client characteristics. Results and Conclusions: Results and their implications for innovative dual diagnosis practice in a range of settings will be discussed. Happy Healthy Life: A pathway for people with co-occurring conditions J. Rogers (jill.rogers@jevs.org)* & C.Thompson *US Aim: JEVS (Jewish Employment and Vocational Service) Human Services engaged Susan Gingerich, co-author of the SAMHSA Illness Management & Recovery (IMR) Evidence Based Practice Toolkit, and Kerry Arnold, behavior therapist for people with co-occurring conditions, to modify the IMR curriculum aimed at people with co-occurring developmental disabilities and mental illness. Training from IMR experts and ongoing technical assistance have enhanced staff members skills in conducting effective groups and helping individuals take specic steps towards their goals. Method: The curriculum, Happy Healthy Life, designed to help individuals with intellectual disabilities better manage their mental illnesses and move forward in recovery, was implemented with the active involvement and collaboration of direct support professionals (DSPs). JEVS Human Services provided this modied curriculum to the most difcult people to serve. Results and Conclusions: Participants now participate in day programs, psychiatric hospitalizations have decreased, and incidents have signicantly decreased. The curriculum is now offered at six agencies, who also note the benet of the program. Assessment of an adolescent living with intellectual disability and Prader-Willi syndrome J.Van Rooyen, C. Capri (charlottecapri@cybersmart.co.za)*, A. Hooper & O. Coetzee *Intellectual Disability Services, Lentegeur Psychiatric Hospital, Mitchells Plain Western Cape, South Africa Aim: This study underscores in-depth assessment when attempting to better understand those who live with intellectual disability (ID). It reports on the assessment of a 15 year-old girl from a low-income community in the greater Cape Town area living with ID, Prader-Willi Syndrome (PWS), and past sexual abuse. Severe behaviour problems and life threatening obesity prompted a crisis psychiatric admission. PWS literature suggests identifying specic phenotypic indicators, investigating discrepant functional abilities, appreciating the patients lived experience, and a sustainable outpatient treatment plan. Method: Systems theory and idiographic case study design were employed. Quantitative data were collected by means of neuropsychological testing, and cognitive and adaptive behaviour assessment. Qualitative data were collected by projective testing, assessment for psychotherapy, multi-disciplinary clinical observations, and standard clinical interviews. Results: Results showed executive function impairments, ne motor decits, expressive language capabilities, little performance anxiety, acute personal sensitivity, and a need for external structuring. These corresponded with the PWS behavioural phenotype, and encouraged further diagnostic considerations. Conclusions: Collecting quantitative and qualitative data facilitated a systemic approach to assessment and treatment recommendations. The study contributes to knowledge of assessment and therapeutic work with children and families living with ID and PWS in lower-income communities.
Symposium: Intellectual disability and the death penalty: The Atkins Decision after 10 years I Intellectual disability and the death penalty: The Atkins decision after 10 years J. G. Olley (greg.olley@cidd.unc.edu)*, M. J.Tasse, S. Greenspan, C. Everington & G. Woods *University of North Carolina at Chapel Hill, US Aim: The symposium will offer presentations and discussion by psychologists and a psychiatrist who have testied frequently on intellectual disability in death penalty trials in the United States. In 2002, the U.S. Supreme Court prohibited the death penalty for defendants with intellectual disability but did not specify clearly the methods to be used to make this diagnosis, resulting in inconsistency among states. The aim of this symposium is to synthesize the lessons learned from 10 years of experience with Atkins cases. Method: Summarize the literature and the personal experiences of expert witnesses regarding the issues that have been claried and the issues that remain to be claried as a result of Atkins hearings. Results: The results will focus primarily on the assessment of adaptive functioning. Such assessment is very challenging due to its intrinsically retrospective nature. Presenters will review ndings regarding the application of the Flynn effect, standard error of measurement, interpretation of multiple scores, use of standardized scales of adaptive functioning, interviewing methods, the neurological underpinnings of adaptive functioning, and the cultural overshadowing of ID. Conclusions: Ten years of Atkins hearings have claried some standards, but they have also highlighted problems in diagnosis that go beyond the courtroom. Adaptive skills of persons with ID How data from NLTS can inform experts in Atkins hearings M.Tasse (marc.tasse@osumc.edu)* *The Ohio State University Nisonger Center UCEDD, US Aim: This paper will present data from the National Longitudinal Transition Study to illustrate the adaptive skills attainable by many individuals with intellectual disability. This will be contrasted with the often-held misconceptions of many lawyers, judges and jurors regarding persons with ID. Method: Review of existing data and presentation of the prevalence of many adaptive skills (e.g., driving, drivers license, bank use, employment, etc.) of adults with a diagnosis of ID. Results: As many as 30% of adults with ID recently graduating from high school have a drivers license. Other similar statistics will be highlighted regarding skill levels of many young adults with ID. Conclusions: The data on high school graduates with ID can inform experts working in Atkins hearings to become better equipped to respond to misdirection and misconceptions held by many attorneys, judges and jurors regarding what persons with ID can and cannot do. These misconceptions are often used to derail a diagnosis of ID despite the presence of well-documented signicant decits in IQ and AB during the developmental period. Mistaken conceptions of adaptive behaviour in death penalty proceedings: Findings of a database of Atkins cases S. Greenspan (stephen.greenspan@gmail.com)* & N. Haydt *University of Colorado, Department of Psychiatry, US Aim: To determine the extent to which experts who testify in Atkins (death penalty exemption) hearings demonstrate an accurate understanding of the nature of intellectual disability (ID) and adaptive behaviour. Method: A database of several dozen Atkins proceedings has been compiled, containing information from trial transcripts, judicial rulings, and reports or afdavits by experts. Results: Virtually every case contains mistaken testimony about adaptive behaviour, with the bulk of these mistakes being made by forensic psychologists who have little or no specialized training or experience in ID. These mistakes are placed into about one dozen categories. Conclusions: The state of expert testimony about adaptive behavior in determining ID death penalty cases is abysmal. Whether or not a defendant (assuming he is deserving) is found to be exempt from execution because of ID thus has some of the qualities of a lottery, the outcome of which is determined by the degree to which testifying experts are mistaken in their understanding of ID, and the degree to which mistaken experts can convince the court that in fact they do know what they are talking about.

Symposium: Intellectual disability and the death penalty: The Atkins Decision after 10 years II Judicial understanding of intellectual disability and correlates of judicial decision-making in Atkins claims K. B. Hensl (kbhensl@aol.com)*,V. Law & K. Heilbrun *Drexel University, Pennsylvania, US Aim: In Atkins v.Virginia, the Supreme Court held persons with intellectual disability (ID) exempt from capital punishment. Subsequent Atkins claims, ID assessments, and case outcomes have varied signicantly, and little is known about how judges actually decide these cases. Method: Using a case vignette and survey approach, this study was the rst to sample federal and state judges from all death penalty states to examine the relationships between defendant ID history, ID assessment practices, judicial demographic and attitudinal factors, and judges decisions in hypothetical Atkins claims. Results: Results indicated defendant history and severity of ID, and judges race, jurisdiction, and attitudes about ID and culpability were signicantly related to judicial ID decisions, while other assessment and judicial factors were not. Conclusions: Findings highlight areas for continued research and education, inform judicial practice, expert testimony and legal strategy, and may elucidate actual judicial decisions.
Symposium: Medication, side effects, and prescribing practices Dening and measuring multiple, concurrent and excessive prescriptions in adults with intellectual disabilities V. Cobigo (virginie.cobigo@gmail.com)*, J. Stortz, H. Ouellette-Kuntz & Y. Lunsky *Queens University, Ontario, Canada Aim: The rates of multiple and concurrent prescriptions in persons with intellectual disabilities (ID) are considered high, and range from 11 to 48%. Concerns about polypharmacy include the increased risk of adverse drug reactions and interactions, as well as the potential for non-adherence to treatment and medication errors. Polypharmacy is often used with patients having physical and/or mental health co-morbidities. The practice of prescribing multiple drugs may conict with international consensus guidelines for medication use in individuals with ID which recommend keeping medication regimens prescribed to persons with ID as simple as possible. In an effort to assess the quality of healthcare provided to adults with intellectual disabilities in Ontario, Canada, we conducted a review of the literature to inform the measurement of polypharmacy as an indicator of quality of care. Method: We searched for papers published in English between 1996 and 2011 and providing information on the denition and measurement of polypharmacy in adults with ID, as well as elderly without ID. Results and Conclusions: We present and discuss various ways to measure multiple, concurrent and excessive or potentially harmful prescriptions. Psychotropic medications use by adults with ID/DD Patterns of use and implications J. Bershadsky (jbershadsky@hsri.org)*, S.Taub, C. R. Moseley, J. Engler & V. J. Bradley *Human Services Research Institute, Oregon, US Aim: Presenters will paint a comprehensive picture of patterns of psychotropic medications usage among adults with ID/DD. We will describe the characteristics of people using these medications, types of medications used, and where people live. We will also show a link between psychotropic medication use and obesity. Method: Authors analyzed data from the recent National Core Indicators (NCI) Adult Consumer Survey, representing over 11,000 adults with ID/DD across 16 US states. Results: Results include: half of the sample took at least one psychotropic medication; people using medication were more likely to live in group homes, less likely to live with parents or in institutions, less likely to have profound ID or no ID, less likely to have a physical disability; and 37% of those taking medications did not have a diagnosis of mental illness (MI). Those living with parents were most likely to be taking psychotropic medications without having a diagnosis of MI. Those taking medications were more likely to be overweight or obese. Conclusion:. Presenters will discuss implications of the ndings and how results can be used by providers, managers, and advocates concerned about the prevalence of psychotropic medication use. Monitoring side effects of psychiatric medicines and possible impact on prescribing practice A. Desnoyers Hurley (hurleyannd@aol.com)* *University of New Hampshire, Institute on Disability/Center for START Services, US Aim: To reduce the use of psychiatric medicine to suppress challenging behavior by documenting medication side effects. Despite efforts to encourage best practice in pharmacotherapy, medicine continues to be used to suppress challenging behaviour at alarming rates. Strategies to identify side effects in people with intellectual disability (ID) may be an answer to impacting prescribing practice. Methods to assess side effects will be reviewed and new strategies presented. Method: Methods to assess side effects in people with ID will be reviewed and evaluated. Results: Assessments include: individual reduction using behavioural assessment; instrumentation designed for the typical population; instrumentation for the ID population. The MEDS may be the most useful instrument to assess side effects which can be discussed with prescribers and clinical teams. In addition, a systems pilot project will be described. Conclusions: Systemic implementation of side effects monitoring systems will have the most impact on the lives of people with ID. With a focus on side effects, it is possible to alert community providers to possible difculties and reduce current reliance on medicine to suppress behaviour.
Neuropsychiatric aspects of adaptive functioning G. Woods (gwoods@georgewoodsmd.com)*, G. Olley, C. Everington, M.Tasse & S. Greenspan *Morehouse School of Medicine, Georgia, US Assessing adaptive functioning often points to specic neuroanatomic areas, highlighting cognitive decits. These decits may include dysexecutive functioning, poor verbal uency, impaired spatial orientation, and limited social and contextual understanding. The anatomic underpinning for these cognitive adaptive functions will be reviewed and tied to specic skills needed for successful adaptive functioning in the community.

Symposium: Physical health problems for adults with ID and mental health problems I Physical Health problems for adults with ID and mental health problems C. Christian-Jones (ceri.christian-jones@bangor.ac.uk)*,Y. Lunsky, S. Havercamp* & L.Taggart *IDDRG, Bangor University,Wales Research highlighted: (1) (Christian-Jones) Assessment of associations between physical health, mental health, challenging behaviours and physical activity in adults with intellectual disabilities (ID), aged 1881. Settings for the research were specialist residential services for adults with ID and additional complex needs in north-east Wales and north-west England, UK; (2) (Lunsky) Comparison of the population of adults from Ontario, Canada with ID and serious mental illness to those with ID and other mental illness, or no mental illness, in addition to a control group of adults without ID. Individuals were compared in terms of demographics, rates of chronic disease, planned outpatient and emergency care; (3) (Havercamp) Exploration of the relationship between mental illness, physical health, health behaviours, and access to healthcare in individuals with intellectual disability (ID), along with the quality of health care provided for individuals with ID and a comorbid mental illness, using Ohios National Core Indicators 20092010 dataset; and (4) (Taggart) A comparison of the understanding of physical and mental health promotion among teachers and parents, using a series of 15 focus groups in Northern Ireland. Thematic Content Analysis revealed three themes: understanding of health promotion, empowering young people with ID, and barriers/solutions to enhancing health promotion. Mental and physical health in adults with developmental disabilities living in Ohio S. M. Havercamp (Susan.Havercamp@osumc.edu)* & R. E. A. Nevill *Ohio State University Nisonger Center, Columbus, Ohio, US Aim: We seek to explore the relationship between mental illness, physical health, and access to healthcare in individuals with intellectual disabilities (ID). Method: Data were drawn from Ohios National Core Indicators 20092010 dataset. This program established a set of performance measures to be used by human service agencies for managing the quality of care provided to individuals with ID. Ohios dataset is unique in that it used random sampling, allowing comparisons between adults with ID with a mental health diagnosis (n = 158) and without (n = 345). Results: Data will be presented reecting the predictive power of access to health care and health behaviours on mental health diagnoses in adults with ID. Additionally, the predictive power of mental health diagnoses on health care access and physical health problems will be discussed. Conclusions: There exists a substantial lack of access to health care for adults with ID in Ohio. Signicant health problems are noted in both the mental health and nonmental health group in the areas of obesity and tobacco use. Individuals with co-morbid ID and mental illness signicantly lack emotional support. Teachers and parents understanding of physical and mental health promotion for young people with ID L.Taggart (l.taggart@ulster.ac.uk)* *University of Ulster, Northern Ireland Aim: The aim of this study was to compare the understanding of physical and mental health promotion among teachers and parents. Method: A series of 15 focus groups were conducted with teachers and parents in Northern Ireland. Thematic Content Analysis was undertaken and three themes were identied: understanding of health promotion, empowering young people with ID, and barriers/solutions to enhancing health promotion. Results: Teachers reported that health promotion incorporated a holistic approach including physical, mental and social health whereas parents focused upon the physical aspects. Teachers and parents reported using a range of strategies to empower the young person with ID to eat healthily, exercise regularly and maintain personal hygiene. Differences emerged with teachers recognising emotional well-being as a central part of their role. Parents did not believe this to be part of their role. Barriers to health promotion included the young peoples level of understanding, parental support, and lack of social inclusion with the greatest difculties for those with severe ID. Conclusions: Whilst health promotion was highlighted as an important role and valued by teachers and parents, this study has identied emotional well-being/mental health as requiring further development and there is an important need for information and education.
Symposium: Physical health problems for adults with ID and mental health problems II The associations between physical health, mental health and challenging behavior in adults with an intellectual disability living in residential services C. Christian-Jones (ceri.christian-jones@bangor.ac.uk)*, R. Hastings, J. Hughes, W. Lindsay & D. Roberts *Intellectual and Developmental Disabilities Research Group (IDDRG), School of Psychology, Bangor University, UK Aim: Few studies have systematically explored the associations between physical health and mental health in adults with intellectual disabilities (ID). Method: Information on physical health (OK Health Check), mental health (HoNOS-LD, GDS-LD), behaviour problems (BPI-S, Reiss Screen), adaptive behaviour (ABAS-II) and physical activity were collected from 102 adults with ID, aged 1881, from specialist residential services for adults with ID and additional complex needs. Results: Results show that the HoNOS-LD total score was signicantly associated with a younger age, lower levels of adaptive behaviour and higher levels of physical activity. The total score on the GDS-LD was signicantly associated with being male, living with 7 or more people, higher adaptive behaviour scores, and lower levels of psychoactive medication. Self-injurious behaviour was associated with older age, higher adaptive behaviour score, ASD, chronic physical health conditions and physical disability. Total scores on the Reiss Screen were associated with being male, higher levels of adaptive behaviour, ASD, chronic physical health conditions, physical disability, being obese and not using psychoactive medication. Conclusions: There may be important associations between the physical and mental health in adults with ID. Intereventions to improve the physical health of adults with ID may therefore also benet their mental health. Chronic disease and health care utilization patterns of adults with intellectual disability with and without psychiatric disorders in Ontario Y. Lunsky (yona_lunsky@camh.net)*, E. Lin, R. Balogh, J. Klein-Geltink, D. Wilton & P. Kurdyak *Centre for Addiction and Mental Health, University of Toronto, Ontario, Canada Aim: There is little research on access to healthcare by adults with intellectual disability and concurrent psychiatric disorder although it has been suggested that these adults have a broad range of health concerns requiring medical attention. This study aims to describe chronic disease rates and planned and emergency health service patterns of adults with intellectual disability and mental illness. Method: We compared the population of adults from Ontario, Canada with intellectual disability and serious mental illness, to those with intellectual disability and other mental illness, or no mental illness, in addition to a control group of adults without intellectual disability. Individuals were compared in terms of demographics, rates of chronic disease, planned outpatient and emergency care. Results: Compared to those without, individuals with intellectual disability had an increased likelihood of planned and unplanned (emergency) healthcare visits. Patients with serious mental illness and intellectual disability had the highest rates of chronic disease, primary care, and emergency care use. Conclusions: Persons with more severe impairments had the greatest likelihood for emergency visits, despite access to outpatient services, suggesting that outpatient care as currently delivered may not be adequate to meet their complex needs.

Symposium: Intellectual disability and crime Characteristics of accused persons with intellectual disability found unt to be tried S. Hayes (susan.hayes@sydney.edu.au)* *Sydney Medical School, University of Sydney, Australia Aim: To review research literature about the characteristics of, and outcomes for, those accused persons with intellectual disabilities found unt or lacking capacity to be tried. Method: Review of research literature and meetings with the New South Wales (Australia) Mental Health Review Tribunal. Results: Little information exists about the personal and offencetype characteristics of people with ID who are found unt, and about the types of available interventions. Data indicate that people with ID are disadvantaged when compared with those found unt on the basis of mental illness, owing to insufcient services for the ID group. The ID group tends to spend more time under supervision, have higher rates of recidivism, and spend time in prison rather than in a secure or community placement. The sparse international research literature indicates that these ndings are not unique to NSW. Conclusions: Whilst a nding of untness aims to ensure that the court process is fair to the accused with ID, it can result in multiple disadvantages. Legal systems which fail to provide services for persons with ID who are found unt may be in breach of the UN Convention on the Rights of Persons with Disabilities, particularly Articles 5, 12 and 13. Empathy towards victims of sexual and non-sexual crimes amongst men with intellectual disabilities who are convicted sexual offenders P. Langdon (P.Langdon@uea.ac.uk)* & O. Hockley *University of East Anglia, UK Aim: To investigate differences in empathy towards victims of sexual crimes and victims of non-sexual crimes among men who have intellectual disabilities (IDs) and are either convicted sexual offenders, or have no history of inappropriate criminal conduct. Method: Both sexual offenders and non-offenders completed the Victim Empathy Scale Adapted (VESA) after being presented with a vignette depicting a victim of a sexual offence, or a victim of a driving offence. Sexual offenders also completed the VESA in relation to their own victim. A measure of global empathy and two measures of distorted cognitions were also completed. Results: Non-offenders scored signicantly higher than sexual offenders on the measure of global empathy. Sexual offenders had signicantly lower levels of empathy towards the sexual offence victim depicted in the vignette than did the non-offenders. Sexual offenders also had signicantly lower empathy for their own victim when compared to the victim depicted in the vignette. There were several signicant relationships between the measures of empathy and distorted cognitions. Conclusions: The results indicate that sexual offenders with ID have difculties with empathy when compared to non-offenders, which has implications for treatment groups. A comparison study of adults with intellectual disability with and without a history of legal involvement J. Jones (jonesj@queensu.ca)*, P. Raina & Y. Lunsky *Queens University, Dept of Psychiatry, Ontario, Canada Aim: The current study describes and compares a subgroup of individuals with intellectual disability (ID) and a history of legal involvement that experienced a crisis, to a group of individuals with ID without a history of legal involvement that experienced similar types of crises. Whether history of legal involvement predicted crises involving physical aggression towards others and police response were determined. Method: A comparison of 130 adults with ID and a history of legal involvement was made to 621 without legal involvement who had experienced at least one crisis in terms of crisis presentation and outcome. Results: Overall, those with a known history of legal involvement were younger, higher functioning and more likely to be male and living in unsupported settings. Legal history was not a signicant predictor of crisis involving aggression but was a signicant predictor of police response to crisis, when other variables were controlled for. Conclusions: Adults with ID and legal history may be more likely to have police respond to their crises than other individuals. Understanding the unique proles of those with legal history can inform the development of services targeted towards offenders with ID.
Symposium: Mental health issues: Prevalence, risk factors and outcomes I Prevalence of mental health issues in older adults with an intellectual disablity in Ireland N. Mulryan (niamh.mulryan@docservice.ie)*, B. Lawlor, P. McCallion & M. McCarron *IDSTILDA, Trinity College Dublin, Ireland Aim: To ascertain and report on the prevalence of mental health problems in an older Irish population with an intellectual disability (ID). Method: Data collected in the rst wave of the Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing (IDS-TILDA) included information on the mental health of 753 people with intellectual disability aged 40 and over, randomly selected from the National Intellectual Disability Database. Information on diagnoses and self- or proxy-rated mental health status was ascertained. Self-reporting respondents completed the CES-D. Results: In total, 47.5% reported a doctors diagnosis of an emotional, nervous or psychiatric condition. This prevalence tended to increase with age and living in residential care. Of those who self-reported, 11% had measured case-level depressive symptoms, with a further 27.1% reporting sub-threshold depressive symptoms. Increased symptom burden was associated with those who were female, older, visually-impaired and lonely. Persons with Down syndrome reported a lower prevalence of mental health conditions. Conclusions: Older Irish individuals with an ID tend to have a positive perception of their mental health; however, compared to reports for the general population, individuals with an ID have a high prevalence of mental health difculties.
Gender differences in risk factors of aggressive behaviour among adults with intellectual disabilities M. Clark (melissacclark@gmail.com)*, A. G. Crocker & D. Morin *Universit du Qubec Montral, Qubec, Canada Aim: The goal of this research was to identify gender differences and similarities in risk factors of aggressive behaviour among adults with ID. More precisely, the project aimed to: identify risk factors of aggressive behaviour (verbal, physical, property, and sexual); explore gender differences and similarities in risk factors of aggressive behaviour; and develop a predictive model of risk factors for aggressive behaviour. Method: This research used data collected for a study on aggressive behaviour among adults with ID living in the community (Crocker et al., 2007). A total of 296 adults with mild or moderate ID were receiving services from three large agencies in the province of Qubec, Canada, which offer residential, social vocational programs as well as individual, family and community support participated. Information was gathered through interviews with the ID participants, their case manager and a signicant other. Client les were also reviewed. Results: Presence of a psychiatric condition, prior arrest and impulsivity were the main risk factors identied. Gender differences in risk factors were only found for physical aggressive behaviour. Conclusions: The implications of the results for the development of intervention programs whether they be prevention, assessment, monitoring or management of aggressive behaviour will be discussed.

Symposium: Mental health issues: Prevalence, risk factors and outcomes II Prospective study of the mental health of adults with intellectual disabilities: Underlying mechanisms and outcomes A. Muir (a.muir.3@research.gla.ac.uk)*, A. Jahoda & S.-A. Cooper *University of Glasgow, Institute of Health and Wellbeing, Mental Health and Wellbeing Research Group, Scotland, UK Aim: Point prevalence rates of mental ill-health in adults with intellectual disabilities (ID) are 3050%, but long-term outcomes and risk factors associated with persistence of, and resilience to, mental ill-health are relatively unknown. Research investigating social inclusion/social support gives opposing ndings, with uncertainty regarding whether it is protective against mental ill-health. There is limited research on associations between mental ill-health and positive/negative views of ones life. Method: This research is a current PhD project, utilising and building upon an existing longitudinal dataset. During 20022004, a population-based sample of 1023 adults with ID found a point prevalence of mental ill-health of 40.9%. During 20042006, 651 were followed-up and two-year incidence was 16.3%. A prospective design is being employed to investigate longer-term outcomes of mental ill-health, and risk factors. A cross-sectional component also investigates participants views on aspects of their lives. Results: Data collection will be completed by June 2012. Preliminary results will be presented. Conclusions: Mental ill-health is commonly experienced by people with IDs and this study adds to our knowledge and future health care.
Symposium: Substance abuse and sex trade Substance (ab)use in persons with ID: Results of a survey in ID and addiction services W. T. To (wingting.to@hogent.be)*, S.Vandevelde, S. Partous, W. Vanderplasschen, K. Lievens,V. Vandenbussche & S. Cole *University College Ghent, Social Work and Welfare Studies, Belgium Aim: The prevalence and nature of substance (ab)use in persons with ID largely remains an under-researched topic up until now. Moreover, adapted treatment for this population is scarce and collaboration between ID and addiction services is still in its infancy. Therefore, the study aims to map the extent and nature of substance (ab)use in persons with ID in Flanders, the Northern part of Belgium. A second goal aims at exploring the possibilities and difculties of collaboration and partnerships between ID and addiction services. Method: In line with a previous pilot study (Neirynck et al, 2010) in one Flemish province, an online questionnaire was forwarded to community services for people with mild ID and addiction services in Flanders. The methodology is based on the study of Taggart et al. (2006). Results: Information was retrieved on the extent and nature of substance (ab)use in persons with ID known to the service agencies, the characteristics of the substance (ab)using persons with ID, the drug-related problems and possible partnerships and collaboration between ID and addiction services. Conclusions: Implications for research and practice will be discussed. The treatment of alcohol problems associated with offending S.Tinsley, W. Lindsay (billlindsay@castlebeck.com)* & M. Emara *Castlebeck, University of Abertay Dundee, Bangor University, UK
Preliminary data from the German aging in intellectual disability study K. Hoffmann (dr.knut.hoffmann@web.de)* *Psychiatric University Hospital, RuhrUniversity Bochum, Germany Aim: It is unclear whether aging of people with ID differs from people with other disabities or non-disabled persons. Our study will investigate the aging process in four different groups. Method: A large German public provider of psychiatric and ID-services has launched a prospective, comparative investigation of aging in differnt kinds of disabilities and a nondisabled contol group. The contol group will be collected from the LWL administration. Three groups of people with disabilities (ID/Addiction/ major psychiatic disorder, e.g. schizophrenia) living in comunity-based homes will be investigated at T 0 and followed up twice a year for ten years. Estimated size of groups will be 50150. Results and Conclusions: Preliminary data will be presented.
Aim: Surveys have suggested that people with intellectual disabilities (ID) abuse alcohol at a rate lower than the general population. However, with changes to society regarding both the community involvement of people with ID and attitudes towards alcohol, there may be an increase in interest in alcohol in this client group. There is also evidence that less alcohol is needed to cause difculty in people with ID. This paper reports on a controlled trial of an alcohol treatment programme that included alcohol awareness and anger treatment. Method: Measures were taken on alcohol knowledge and anger expression. Thirty (30) participants made up the treatment and control groups. All had a history of alcohol use in relation to offending behaviour. Results: Treatment improved knowledge and relapse strategies signicantly, in relation to baseline levels and in comparison to controls. Improvements were maintained to 3 month follow up. Conclusions: Alcohol treatment can be included as a viable option in a forensic ID service.

Posters: Aging inuence on depression symptoms in adults with Down syndrome and without dementia K. Barisnikov (Koviljka.Barisnikov@unige.ch)* & C. Straccia *Department of Psychology, University of Geneva, Switzerland Aim: Aging is a risk marker for the development of depression and dementia in Down syndrome (DS) adults. Given that the symptoms of these mental diseases are closely related, elderly DS individuals suffering from depression are often diagnosed with Alzheimer disease (AD). The aim of this study is to evaluate the inuence of aging on depression symptoms among DS adults who do not suffer from AD. Method: The sample comprised 34 DS adults, with mild or moderate ID. The mean chronological age of the group was 39.44 years. Depression symptoms were assessed using the depression subscales of the Reiss Screen of Maladaptive Behavior and the Developmental Behavior Checklist Adult version (DBC-A). Clinical evidence of AD was an exclusion criterion. Results: Age and behavioural signs of depression showed a signicant positive correlation (Spearmann). Similar trends were found for two items of this subscale (Point-biserial). No signicant correlations were found between age and either physical signs of depression subscale, or on the depressive subscale of DBC-A. Conclusions: The items anxiety and crying seem to be particularly discriminative for age-related depression symptoms in DS. These ndings can contribute to the diagnostic process among older DS adults. Looking beyond categorical/descriptive psychaitric diagnosis for individuals with IDD J. Barnhill (jarrett_barnhill@med.unc.edu)* *University of North Carolina School of Medicine, US Aim: The Diagnostic Manual for Intellectual Disabilities (NADD Press, 2007) adapted many of the diagnostic criteria from the DSM-IV-TR (APA, 2000) to better suit the needs of clinicians working in the eld of dual diagnosis. To date there is no data regarding formal eld testing and validation of the modied criteria by statistical analysis. The rapid growth in the neurosciences of both mental disorders and IDD provides new data on genetics, neurophysiology, neuropsychology and functional neuroimaging that challenges the integrity of descriptive models. Method: This presentation addresses the problems of differential diagnosis of psychotic disorders among individuals with autism spectrum disorders (ASD), severe IDD, behavioral phenotypes such a Velocardiofacial syndrome (22q1113 deletion), bipolar disorder and schizophrenia. Results: There is considerable overlap between schizophrenia and bipolar disorder in term of genetic risk, clinical course, mood/thought disorder/psychotic symptoms and treatment responsiveness. For individuals with ASD and IDD, the problem is further complicated by early onset developmental abnormalities in affect regulation, sensory processing, and threshold for cognitive and behavioral disorganization. Conclusion: Neurobiological ndings to augment clinical descriptions of mental disorders and underlying neurobiology of ASD/ADD is required for future diagnostic approaches. Distinguishing high functioning ASD from ADHD in a clinical sample W. Brooks (Whitney.Brooks@osumc.edu)* & E. M. Butter *The Ohio State University Nisonger Center, US Aim: High-functioning autism spectrum disorders (HFASD) share many symptoms with attention decit/hyperactivity disorder (ADHD), including social decits, attention problems, and self-regulation problems. It is important that screening measures accurately differentiate between these disorders to ensure that proper referral and treatment be provided. It is hypothesized that children with HFASD will present with more social problems and less externalizing problems than children with ADHD. Method: A record review of children presenting for evaluation at a developmental disability clinic was conducted. Participants included 94 children (mean age = 9.4 years), with either a primary diagnosis of ADHD or HFASD, who were matched on age, gender, and intellectual functioning. Participants had been rated by parents using the Child Behavior ChecklistAges 6 to 18 years (CBCL/618), to assess for social and behavioral problems. Results: Participants diagnosed with ADHD scored signicantly higher than children with HFASD on the attention problems subscale (p = .001), the aggression subscale (p = .006), the externalizing domain (p = .017), and the ADHD scale (p < .001) of the CBCL. Conclusions: Several of the externalizing subscales on the CBCL were effective at differentiating children with HFASD from children with ADHD in this clinical sample. Posters:
Social self-efcacy and depression symptoms in adults with autism spectrum disorders B. M. Butler (butler.591@osu.edu)* & B. A. Benson *Ohio State University Nisonger Center, US Aim: Autism spectrum disorders (ASD) are characterized by decits in social skills and communication, and the presence of repetitive behaviours or a restricted range of interests. The difculties individuals with ASD experience with social interactions persist into adulthood. Adults with ASD experience depression at least as often as adults in the general population. In the general population and youth with ASD, a robust negative correlation has been found between social self-efcacy and depression symptoms. The current study aims to investigate the relation between social self-efcacy and symptoms of depression in adults with ASD. Method: Self-report data was collected on 50 adults with ASD in the United States. Subjects completed the Autism Spectrum Quotient, the Beck Depression Inventory II, the Self-Report Depression Questionnaire, the Glasgow Social SelfEfcacy Scale, and the Scale of Perceived Social Self-Efcacy. Results: Regression analyses will be performed on total scores of the depression and efcacy measures to investigate a possible relation between social selfefcacy and depression symptoms in the current sample. It is predicted that scores on social self-efcacy will account for variance in depression scores. Conclusions: The results of this study may have implications for prevention of depression and clinical interventions for adults with ASD. Mindfulness sessions for people with intellectual disabilities M. Chapman (melanie.chapman@manchester.gov.uk)*, D. Donalds & D. Mitchell *Research Institute for Health and Social Change, Manchester Metropolitan University, UK Aim: Mindfulness is the practice of focussing attention purposefully in a non-judgmental way on current circumstances. It is increasingly used as a tool for managing a range of difculties, including stress and depression. Mindfulness has not been widely used with people with intellectual disabilities (PWID). However, some small-scale research studies indicate that the use of mindfulness techniques can help PWID to reduce aggression, reduce obesity, and maintain community placements. Our aim was to evaluate one-off mindfulness sessions for PWID. Method: People who attended sessions completed an evaluation form. Qualitative interviews were conducted with a subset of these people. Data was analysed using thematic analysis. Results: Feedback about the sessions was generally positive. Some people had listened to a CD that was provided and had found this useful. Other people had not listened to the CD for a variety of reasons (e.g. they had not felt stressed or because of their living situation). Participants felt that they would benet from further sessions and that other PWID would also benet from mindfulness. Conclusions: The ndings suggest that it would be useful to develop a series of mindfulness sessions for use with PWID and that PWID need support to incorporate mindfulness within their lives. Relevance of the values and assumptions regarding sexual offences of frontline workers dealing with person with ID H. Coombs (hcoombs@mpscmhs.on.ca)*, M. Dear, J. Nixon & P. Sanhueza *Developmental Disability Service, North Bay Regional Health Centre, Ontario, Canada Aim: Values and attitudes determine the approach to care by providers towards their clients. Whenever alleged or actual sexual offences have occurred the approach can become more punitive than therapeutic. We review the impact of staff value system on the course and outcome of the underlying clinical condition of 26 patients involved in inappropriate sexual interactions (ISI) in rural Ontario in the last 5 years. Method: We have validated a set of 10 statements describing values held by care providers. In this presentation we correlate them with the clients clinical and personal situation at the time when we were involved as consultants in their care. We illustrate them with clinical vignettes. Results: Rather consistently clients involved in ISI were negatively affected by staff responses to their needs. From a legal viewpoint, their condition as ID led to sentences that were disproportionate for the severity of the offence. The concept of not criminally responsible (NCR) lacks scientic and clinical validity. Conclusions: We provide qualitative data based on cases closely followed by our team that insinuates that ID clients involved in ISI face arbitrary decisions at clinical and legal level. True advocacy for them is lacking.

Posters: The differences of psychiatry of children and adolescents with intellectual disability? Diagnoses, medication and outcome in a case series D. Dossetor (Davidd@chw.edu.au)* *The Childrens Hospital at Westmead, Sydney, Australia Aim: A child psychiatrist reviews a series of cases with intellectual disability or autism. Method: Case studies are examined for diagnoses, medication number and type and outcomes using the Child Global Assessment Scale (CGAS). Results: Of 140 cases, most individuals displayed aggression and disruptive behaviours. Co-morbid diagnoses included autistic spectrum disorders, attention decit hyperactivity disorder (ADHD), and signicant anxiety. Many have lability of mood, sleep problems, and developmental coordination disorder. Half of the cases demonstrate self-injurious behaviours. Most have been involved in trials of several medications before referral. The average number of current medications is 2.5 (range 16). At presentation average CGAS is 35 (range 2055)(normal 70100); average gain is 20. Conclusions: Additional psychiatric impairment is large and substantially reversible. Co-morbidities often make rst line treatments unsuccessful. Several medications are required, tackling different symptoms. Treating anxiety or mood improves ADHD, disruptive behaviour or self injury.Treating mental health problems of these young people is different to mainstream psychiatry but improves their quality of life. Effective professional development in early childhood settings in Australia: Maximising social and communication supports for young children at risk of challenging behaviours G. Farrell (genevieve.farrell@newcastle.edu.au)* & M. Arthur-Kelly *The University of Newcastle, Australia Aim: This poster describes aspects of an extensive program of professional development for staff working in early childhood intervention and early childhood programs in NSW, Australia. The project aims to build capacity in staff supporting young children with developmental disabilities, including Autism Spectrum Disorder (ASD), with an emphasis on preventing and reducing challenging behaviours and increasing socially adaptive engagement and participation. Method: Each workshop was conducted over three days, separated by a period of time for people to trial strategies. Expert practitioners wrote and presented the program. Results: Nine rounds of professional development involved more than 1000 participants. Data received to date demonstrates important improvements in reported skills and knowledge in participants, and reduced concerns. Conclusions: Our project has met, in part, a real need for practical evidence-based support for staff working directly with young children who may experience challenges in social interaction and communication. The challenge is to integrate with other programs and extend best practices in a meaningful and systematic way. Polypharmacy proles and predictors among adolescents and adults with autism spectrum disorders J. K. Lake (johanna_lake@camh.net)*,Yona Lunsky & J. A. Weiss *Centre for Addiction and Mental Health, Department of Psychiatry, University of Toronto, Ontario, Canada Aim: Mental health and behavioural issues are extremely common in individuals with autism spectrum disorders (ASD) and the primary treatment for these issues is pharmacological. Recent studies estimate that over one half of young people with ASD are prescribed psychotropic medications with one fth taking two or more (Aman, Lam, et al., 2003; Langworthy-Lam, et al., 2002; Mandell, at al., 2008). The aim of this study is to examine the medication proles and predictors of polypharmacy among an Ontario-based sample of adolescents and adults with ASD. Method: As part of an online survey examining health service utilization patterns among individuals with ASD, 235 parents completed measures related to their childs community supports, age, gender, medications, comorbid psychiatric disorders, history of aggression and self injury, severity of ASD, residence, and history of previous hospitalizations. Results: Preliminary results identied that 52% of adolescents and adults were reported to be taking at least one psychotropic medication, with almost one quarter (23%) taking 2 or more psychotropic medications. The most commonly prescribed medications were antipsychotics and antidepressants. Conclusions: Adolescents and adults with ASD are highly medicated. Results will be discussed in terms of predicting polypharmacy among adolescents and adults with ASD. Posters:
Inpatient care use and medical expenditure in people with intellectual disability co-occurring schizophrenia J.-D. Lin (a530706@ndmctsgh.edu.tw)*, W.-J. Hung, L.-P. Lin & C.-L. Wu *School of Public Health, National Defense Medical Center, Taipei, Taiwan Aim: This paper analyzes the hospital inpatient care use and medical expenses of people with ID co-occurring with schizophrenia in Taiwan. Method: Nation-wide data were collected concerning hospital admissions and medical expenditures of people with ID (N = 2,565) among national health insurance beneciaries. Multiple regression analyses were undertaken to determine the role of explanatory variables in hospital psychiatric inpatient care and medical expenditure. Results: In 2005, 2,565 individuals with ID used hospital psychiatric inpatient care, with 686 cases (26.7%) co-occurring with schizophrenia. There was a higher expenditure in annual inpatient fees for those ID patients with schizophrenia than for those without schizophrenia (251,346 vs. 126,666 NTD) (p < 0.001). Among ID patients with co-occurring schizophrenia we found factors related to female gender, longer hospital stays in chronic wards, and general ward use, which in turn indicated more hospital inpatient care (R2 = 0.417). Annual hospital inpatient days were signicantly affected such factors as severe illness, the annual inpatient care fee, and longer hospital stays in acute or chronic wards (R2 = 0.746), indicating higher expenditures in medical care fees than their counterparts (R2 = 0.620). Conclusions: The study highlights that future research efforts should examine the efcacy of hospital inpatient care for people with ID and schizophrenia. Understanding family and agency burden of care by dual diagnosis client type D. C. Lougheed (dclougheed@yahoo.com)* & S. Farrell *Faculty of Medicine, University of Ottawa, Ontario, Canada Aim: The Royal Ottawa Health Care Groups Dual Diagnosis Consultation Outreach Team has received over 1200 referrals in the past 10 years. These referred adults range in age from 17 to 86 years. Method: We looked at the differences between clinical (Axis 1 and 2) as well as demographic characteristics of individuals seen by our programme, where caretakers had completed an assessment of caregiver burden, by conducting a retrospective data analysis of 437 clients where data on caregiver burden was available. We used the Family Burden Scale (Reinhart and Horwitz, 1992) and developed a parallel form for agency-based caregivers. High and low levels of caregiver burden, developmental level (mild to profound), length of team involvement, as well as Axis 3 medical conditions and clinical presentations were used to understand ratings of caregiver burden in the two groups. Results and Conclusions: Implications for triage and service provision are discussed. Outcomes from Positive Behaviour Support Training: A systematic review A. MacDonald (amacdonald@trfs.org.uk)* *Tizard Centre, University of Kent, UK Aim: To evaluate the available research on outcomes of Positive Behaviour Support (PBS) training for both staff and service users, and to identify potential areas for future research. Method: Searches were carried out using key words to identify studies which reported on PBS training. Those studies were then evaluated against specied criteria for inclusion, resulting in 13 studies being identied for the review. These studies were analysed in terms of the variables measured and outcome measures used. Results: Nine (9) studies focused on outcomes for staff, 2 focused on outcomes for service users and 2 studies reported outcomes for both staff and service users. Staff outcomes included changes in skills, condence, knowledge, attributions, and emotional responses to challenging behaviour. Service user outcomes demonstrated reduction in levels of challenging behaviour, but there was no evidence of change in quality of life in the one study that evaluated this. Conclusions: Research demonstrates that PBS training has had positive outcomes for staff and there is some evidence of reductions in levels of challenging behaviour from service users. However, no evidence was found for PBS training having a positive impact on quality of life for service users, thereby indicating an area for further research.

Posters: Assessment of the implementation of a resource specialized in severe behavior problems in persons with intellectual disabilities D. Morin (morin.diane@uqam.ca)* & M. Rivard *Universit du Qubec, Canada Aim: This session presents a summary of a research project on one resource that provides transitional residential service specialized in the assessment and stabilization of severe behaviour problems (SBPs) in persons with an intellectual disability (ID). The mandates of the research project are to evaluate the implementation and effectiveness of this resource. This session covers the rst part of the study concerning the assessment of the implementation. Method: The assessment of the implementation is based on three essential components of the resource: physical environment, organizational structure, and clinical process. Data collection consists of written documentation, observations of the research team and interviews with 17 key informants. Results and Conclusions: Planned adaptations for the physical environment have been largely implemented. In terms of the organizational structure, recruitment difculties and staff turnover were problematic and had led to problems in implementing the planned training program and the clinical process. There is also a need to distinguish the clinical versus administrative processes. The results show some discrepancies between what was planned in terms of clinical process and what has been established (admission criteria, completion of the clinical program, formations, evaluation tools, consignation of the clinical data). Challenging behaviour and physical health in intellectual disability D. Morin (morin.diane@uqam.ca)*, J. Merineau-Cte*, M.Tass, H. Ouellette-Kuntz & M. Kerr *Universit du Qubec Montral, Qubec, Canada Aim: Persons with intellectual disabilities (ID) can have the same physical health problems as others. In addition, studies have documented relations between some physical health problems and challenging behaviour. This research project aims to study the health status of individuals with ID in the province of Quebec. Method: The health of 791 people with intellectual disabilities was assessed with the Short Form 36 Health Survey (SF-36v2; Ware et al., 1994) and a questionnaire developed for this study. The questionnaire consisted of demographic details, physical health and psychiatric diagnoses, medication and challenging behaviour. The questionnaires were sent by post to the natural family and answered by the person with an ID and/or a family member. Results: Preliminary results on the relations between physical health and challenging behaviour of people with intellectual disabilities in Quebec will be presented. Conclusion: The implications of the results for the development of recommendations for health promotion will be discussed. Public agencies perceptions of challenges and needs with young children with ID or autism and problem behaviours M. Rivard (melina.rivard@hotmail.com)*, D. Morin & C. Dionne *Universit du Qubec, Canada Aim: The aim of this session is to present the results of two studies on behaviour problems (BPs) in early childhood experienced in public service agencies for persons with intellectual disabilities (ID) or autism in Quebec. These studies focus on the perceptions of therapists, professionals and managers on the needs and challenges encountered in the delivery of services to children who have BPs. Method: Data was collected using a questionnaire designed to identify: the number of children with BPs receiving services from each agency, integration of the children in preschool settings, and the type of BPs presented; information received by staff on BPs and early childhood, perceived roles of the participants, type of services offered for children with BPs, and assessment and intervention tools used to evaluate BPs. Seven service agencies have participated, for a total of 75 participants. Results: Of the participants, 84% indicated they have worked with children with BPs in the last year; 89.7% said that they have need of information on BPs; 87.7% indicated that they have to modify interventions for those children. Conclusions: Data highlighted needs for a specic test and intervention on BPs adapted to young children with ASD or ID. Posters:
ID in young children with autism spectrum disorders : Description of intellectual and adaptative proles M. Rivard (melina.rivard@hotmail.com)*, C. Parent-Boursier, A.Terroux & C. Mercier *Universit du Qubec Montreal, Universit du Qubec TroisRivires, Canada Aim: No agreement has been reached yet on the co-occurrence of intellectual disability (ID) and autism spectrum disorders (ASD) in children. The majority of studies estimate the prevalence of ID in ASD to be between 40% and 70% (Baird et al, 2000; Bertrand et al., 2001; Charman et al., 2011; Gilberg & Coleman,1992; Fombonne, 2001; Fombonne, 2003). This session reports the results of an evaluation of the cognitive functioning and the adaptative behaviours of a large group of young children with ASD. Method: Participants were 230 children with ASD (46 girls [20%] and 184 boys [80%] from 2 years 7 months to 5 years of age (M = 4.06; SD = .58). Assessment instruments: intellectual quotient (IQ) = WPPSI-III and adaptive behaviors (AB) = ABAS-II. Procedure: evaluations were conducted by the researchers team before children began IBI services. Results and Conclusions: Average IQ for entire group was 74.9 (SD = 22.6), ranging from 42 to 134. Performance IQ ( = 81.4) signicantly higher than verbal IQ ( = 76.5) (t (129) = 4.32; p < .00). ABs average score was 66.5 (SD = 14.8), ranging from 41 to 130. Nearly 40% (91 children) met the ID criteria (IQ and CA < 70). Special Olympics Minnesota Healthy Athletes Program and Healthy Minds: Designing a mental health screening instrument S. Coleman Symons (scsymons@stkate.edu)*, L. Spofford, R. McLeod, J. McLeod, H. Harmer, M. Kane & S. Burrows *Saint Catherine University, Department of Psychology, Minneapolis/St. Paul, Minnesota, US Aim: Few brief mental health screenings exist for individuals with intellectual disability (ID), and these individuals are at comparatively higher risk of experiencing mental health problems. This study incorporates population-specic feedback into the development of a brief pilot mental health screening instrument for adults with ID. Method: To address existing barriers to mental health assessment in this population, we used audio-taped focus groups and interviews with approximately 22 Special Olympics athletes to guide instrument development. Participants provided specic feedback on administration protocol, verbal items, visual stimuli, and temporal and quantication issues. Results: Focus groups and interview data suggested three distinct construct challenges: (1) visual and verbal representation (e.g. of words and amounts) and (2) temporal distinctions (today vs. within the last two weeks) and (3) behavioural self-report. Using the data, we have constructed a pilot instrument that attempts to address these challenges. Conclusions: By engaging the target population in the instrument development process, we have developed a preliminary screening that can be subjected to ongoing psychometric analysis aimed toward accurate and reliable detection of anxiety and depression symptoms in adults with ID. Are people with intellectual disabilities more vulnerable to stress? The explanation and understanding of mental health issues in individuals with ID M. van den Berg (m.vd.berg@talant.nl)* *de Swaai Talant/GGZ Friesland Beetsterzwaag, Netherlands Aim: A review of the literature suggests adults with intellectual disability tend to be more vulnerable to stress than the general population. Social interaction, coping, perceptions of control, loss, and psychological distress seem to be the areas of higher concern. To understand mental health issues in people with ID a multidisciplinary approach should be taken that combines medical (i.e. psychiatric and somatic issues) with behavioral and psychological points of view. Method: Environmental factors, as well as stress and burden, should be taken into consideration, as well as inner (neuro-psychological) factors of the client where the etiology and course of mental illness can produce explanatory models to mental illness, as well as indicate which factors will promote mental health. Results: In that way, reactions to problem behaviour will not be merely ad hoc reactions with a nal outcome of control and sedation, but will evolve to a multidisciplinary approach with thorough examination and proper methods of treatment, and eventually to prediction and prevention of mental distresses and illnesses. Conclusions: Diagnostics sustained by questionnaires and treatment combined with Routine Outcome Monitoring can tell more about effectiveness of methods.

Sympsoium: Assessment and eligibility The development of ID Equivalent eligibility pathways for brain-impaired consumers with borderline IQ: Equity, science and scientism S. Greenspan (stephen.greenspan@gmail.com)* & G. Woods *Morehouse School of Medicine, Atlanta, Georgia, US Aim: To explore the growing trend toward IQ equivalence categories for people with brain impairments and severe adaptive decits but with FullScale IQ scores well above the typical ID ceiling. Method: Government eligibility formulas in US states and Canadian provinces were surveyed, and all ID equivalence loophole categories were listed and described. Some providers and consumers were surveyed to see how these are actually implemented. Results: Although the intent of these provisions is to reduce the reliance on strict IQ ceilings, that has proven not always to be the case (for example, in some places the celing is just raised a few points but not eliminated). In addition, there is still a heavy reliance on test scores, as in the use of standard deviation cut-offs for adaptive behavior. Conclusions: The opertional denition of intellectual disability (ID), and service eligibilty formulas, are so infused with scientism (reliance on standard score cutoffs) that eligibility reform is difcult to carry out. Ethical, scientic and political implications are discussed. Overcoming labels: Supports in intervention M. del Carmen Malbrn (malbranm@gmail.com)* *University of Buenos Aires and National University of La Plata, Argentina Aim: Global indexes such as the IQ and adaptive behavior have limitations in terms of intervention. This session describes a Supports to Provision Scheme that provides a way of seeing disability beyond categorization of levels and focus assistance on the aids the person requires for improving the quality of life and psychological well-being. Method: A Supports Provision Scheme for planning, implementing and evaluating supports was developed. A team of graduates in Special Education, attending a seminar of Planning, Implementation and Evaluation of Inclusive Projects, applied the scheme to 17 intellectually disabled persons of different age, gender, personal history and informed level of disability in Argentina. The obtained data were then discussed among the graduates, the academic tutor and the main teacher. Results: The results showed examiner agreement about the selected dimensions of the scheme. Comments reected the sensibility of the procedure to describe needs and plan intervention aimed at the improvement of psychological well being and quality of life. Conclusions: In educational and community settings the focus on support provision appears to be more appropriate than to usual diagnostic categories. The construction and validation of a screener to assess mild intellectual disabilities and borderline intelligence X. M. H. Moonen (Xmoonen@koraalgroep.nl)*, H. L. Kaal & H. Nijman *College and Graduate School of Child Development and Education, University of Amsterdam, Netherlands Aim: Due to the lack of a valid screening instrument, many people with a mild intellectual disability or borderline intelligence (MIDBI) are not recognized as such, and subsequently do not get the special help they need. Offenders entering the criminal justice system, for example, are not routinely tested for the presence of a MIDBI. To enable this screening in the future, a screening instrument which takes less than 15 minutes to complete by a non-professional is needed. The present research aims to develop a screening instrument with which offenders with a MIDBI can be easily detected when entering the Dutch justice system. Method: A preliminary screener was developed with an excess number of items. Offenders with, and without, a MIDBI were tested with this preliminary screener. Results: Using the results of an full-length IQ-test as a gold standard, data analyses were performed to determine which items predicted a MIDBI. A limited number of the initial items were tted into a shortened screener. An initial ROC-analysis indicated good predictive. Conclusions: Preliminary results are promising and suggest that the shortened screener might be useful in both judicial and service settings to detect people with a MIDBI.
Cognition, Communication, Social Impairment
Symposium: Interventions Evaluation of practice within intervention strategies among students with ASD: A meta-analysis J.Tannous (jumantannous@gmail.com)* & O. E. Hetzroni *Department of Special Education, Faculty of Education, University of Haifa, Israel Aim: The purpose of this study was to explore if the different components of practice exist in teaching strategies used for effective skill learning by students with autism spectrum disorder (ASD). The components of practice were addressed with regards to characteristics of autism and its contribution to learning and generalization processes. A model was used to represent three basic learning processes: neurobiological, cognitive and behavioural. Method: A meta-analysis was performed across intervention strategies used for teaching skills to elementary-age students between the years 1950- 2011. Effect sizes were calculated for all studies. Results: Practice was found to be a common denominator in most processes of the successful strategies used for teaching children with ASD across different methods of intervention. Results demonstrate that elements of intervention structure, repetition, intensity and consistency were most commonly found in the studies. Conclusions: Results of this study demonstrate that learning is highly efcient when practice is used along the intervention process, enhancing occurrence of learning and generalization The model used for the study demonstrates the role of practice in addressing difculty areas associated with ASD, demonstrating its key role in effective teaching strategies for students with ASD. Mediation between staff and persons with sever/profound intellectual disability as a means of enhancing their daily functioning H. Lifshitz-Vahav (hefziba@013net.net)* & P. S. Klein *School of Education, BarIlan University, RamatGan, Israel Aim: The goal was to examine the effect of the Mediational Intervention for Sensitizing Caregivers (MISC, Klein, 1992) on (a) the quality of interactions between staff and persons with severe/profound intellectual disability (ID) and (b) cognitive, affective and behavioral functioning of the persons with severe/profound ID. Method: Ten staff and 32 persons with severe/profound ID in two rehabilitation centers participated in the study. The staff in the experimental group received ve training sessions on the MISC, and subsequently conducted MISC intervention for one year in the rehabilitation centers. Staff in the control group received two training sessions. Results: Following the intervention, mediation of meaning (choice making), expanding and competence with explanation were observed more in the intervention group, whereas mediation of physical assistance were observed more in the control group. The participants in the MISC group improved their arithmetic skills, time concept and sequential memory of two digits. Positive behaviors were observed in the MISC group while verbal and maladaptive behavior decreased. Conclusions: Results support the structural-cognitive modiability theory; to wit, environmental intervention can lead to signicant change in individuals, regardless of the severity of the disability and the age. The implications of using restricted language when talking to children with severe communication impairments and autism A. Emerson (anne.emerson@ntu.ac.uk)* & J. Dearden *Nottingham Trent University, City of Nottingham, UK Aim: To explore how the recommendation for restricted language use affects the opportunities of children with severe communication impairments. Method: Action research case study of a non-verbal boy with autism that involved working regularly alongside school staff for 18 months. The researchers used rich language, followed the childs lead, and offered opportunties to engage at a social level. Multiple sources of evidence (documents, interviews and video data) were analysed to identify outcomes for the pupil and teaching staff. Results: The pupil demonstrated comprehension of complex language, unexpected literacy skills and increased intentional and consistent communication. Staff reported changes in their expectations and use of language which resulted in the pupil accessing increased opportunities to communicate and demonstrate his abilities. Conclusions: The practice of adults reducing their speech to single words and two-word phrases can lead to reducing the communication and learning opportunties of non-verbal children.

Symposium: Health communication: Participation of people with I/DD in hospital settings Children with I/DD communicating in hospital: Needs and experiences reveal barriers and facilitators to better communication B. Hemsley (b.hemsley@uq.edu.au)*, B. Davidson, N. Scarinci, K. Bastock, S. Lee, M. Kuek, K. Munro & N. Seedat *The University of Queensland, Australia Aim: In this research we explored the hospital communication experiences and needs of children with developmental disability (DD) and little or no speech from the perspectives of: parents, older children with DD and no speech, allied health professionals in the community, and hospital-based health professionals who have worked with these children. Method: Indepth narrative interviews with 7 children with DDs who use augmentative and alternative communication (AAC) and 15 focus groups with 50 adult participants were conducted, and analysed by content themes. Results: The data indicated a range of barriers and facilitators to better communication in hospital that arise before and during the hospital stay that impact upon the childs communication experience in hospital. Children needed to communicate not only basic needs but also to control their environment and indicate preferences for leisure and social interactions. Although parents and healthcare professionals described environmental and policy barriers to children communicating in hospital, children wanted to use their own AAC systems in hospital in the future. Results will be discussed in relation to ndings on similar research investigating the experiences of adults with developmental disability and little or no speech in hospital. Communicative interactions in hospital for people with little or no functional speech: A Norwegian perspective S. Balandin (susan.balandin@himolde.no)*, S. Julnes, K. Lyng & L. Grovdal *Molde University College, Norway Aim: Despite the ready availability of paid support to people with intellectual disability and little or no functional speech, little is known about the collaboration between nurses, the hospitalised individual, family members, and paid support workers. This project explored how stakeholders viewed the success of communication in hospital when the sick person requires augmentative and alternative communication (AAC). A second aim was to explore how stakeholders perceived their collaboration. Method: In-depth interviews were conducted with 30 nurses, 30 adults who need AAC, 30 family members, and 30 paid support workers. The interviews were transcribed verbatim and analysed qualitatively using a narrative methodology. Results: Preliminary results indicate that although adequate support is available there is little understanding of AAC in hospitals and the collaboration between stakeholders on the ward is not always easy or satisfactory Conclusions: Collaboration does not occur just because all stakeholders have the clients best interests at heart. Furthermore, there are some differences apparent between the results of this study and those of studies conducted in Australia. These will be discussed during the presentation ICF as an organizational framework for collaborative efforts related to AAC C. Rowland (rowlandc@ohsu.edu)* *Oregon Health Science University, Oregon Institute on Development and Disability, US Aim: The International Classication of Functioning, Disability and Health (ICF) developed by the World Health Organization, provides a coding scheme for characterizing health information that stresses human functioning (rather than disability), a universal model (rather than a minority model), an interactive/integrative model (rather than a onedimensional model) and wide cultural applicability. The ICF involves Body Functions, Structure, Activities and Participation related to health condition or disability, and Environmental factors that affect them. The ICF is particularly well-suited to augmentative and alternative communication (AAC) because it completely separates speech from communication functions and includes a strand on communication devices. It offers a participation model that crosses educational, medical and social barriers that presently limit the documentation of AAC skills and the development of appropriate AAC goals. Method: Researchers at the Institute on Development & Disability at Oregon Health & Science University are designing a web-based tool for AAC stakeholders to use in the process of developing clinical/educational goals related to communication. Results and Conclusions: This eld-tested code set has the potential to help stakeholders collaborate in prioritizing intervention targets for AAC users and candidates.
Symposium: Assessment Professionals and parents reports of an authentic assessment method (AEPS) in Quebec C. Dionne, C. Chatenoud & M. Boutet (maude.boutet@uqtr.ca)* *Universit du Qubec TroisRivires, Canada Aim: Best practices have demonstrated the potential for using an authentic assessment approach in early intervention. In Quebec, even if early interventionists are usually working with parents and daycare educators for having contextual and relevant information for helping the child, conventional assessment is still largely used. This study reported results from a two year action research designed to help early interventionists to monitor authentic assessment through the French version of the AEPS. Method: 15 children with intellectual disabilities benet from the implementation of the AEPS during two years in different parts of Quebec area. Mixed methods have been used for gathering data from different participant of the study (49 professionals and 25 parents) throughout the process of assessment. Results: Barriers and facilitators in using the AEPS are described in terms of: gain for the child (better knowledge of functional skill, intervention embedded in daily routine); family professional partnership (parent involvement, knowledge of childs strengths and weaknesses); and interprofessional collaboration (interdisciplinary practices, daycare activities). Conclusions: Our data illustrate the gains related to the potential use of a naturalist approach from improving early intervention in Quebec. Implication for professional development system and training will be discussed. Using the Online Communication Matrix to assess individuals with severe communication disorders C. Rowland (rowlandc@ohsu.edu)* *Oregon Health Science University, Institute on Development Disability, Portland, US Aim: A free online version of the Communication Matrix (www. communicationmatrix.org), a communication skills assessment tool, is available in English and ve other languages (Rowland, 2004). This instrument is designed for individuals functioning at the earliest stages of communication and for individuals who use any form of communication, including pre-symbolic and augmentative or alternative forms. Method: Users enter information about an individuals communication skills as well as diagnosis and functional impairments. Parents and professionals may independently complete the assessment and share results. Interactive features make it possible to follow progress and review achievement in depth. No identifying information is collected through the web site. The information that users provide goes into a database that collects new information about the development of communication skills in children with specic disabilities. Results: With approximately 430 new assessments entered each week, the database presently includes over 26,700 assessments. Many individuals have been assessed multiple times, providing information about incremental skill development. 7% of individuals assessed are described as experiencing mild ID, 21% moderate ID, and 36% severe ID. Conclusions: The clinical and research capacities of the online Matrix will be described and developmental data on children with specic disabilities associated with ID will be presented. Categorization decits as a basis to language impairment in children with autistic spectrum disorder O. Hetzroni (hetzroni@edu.haifa.ac.il)* & G. Arbeli *Faculty of Education, University of Haifa, Israel Aim: Language development depends on the ability of a child to transfer knowledge, generalize, and develop categories that assist in organizing and managing information processing. Children with autism spectrum disorder (ASD) differ in their communication and language development from typical children. The purpose of this study was to identify language characteristics of children with ASD and investigate if they exhibit specic decits in categorization. Method: Sixteen children with ASD participated in the study, ages 47. Children were videotaped during various types of play activities with their parents. Language samples analyzed to evaluate the specic characteristics. Results: Preliminary results demonstrate that both semantic and morphologic language differ, thus presenting a different categorization process. Children had errors in choosing semantic categories, verb inection, conjugation structure and verb agreement. Participants demonstrated limited use of questioning, and used mainly simple sentences. Conclusions: The presentation will demonstrate results and propose an explanation that might provide additional understanding to the unique language structure presented by the participants in the study.

Symposium: Social and emotional development The relationship between social and emotional processing abilities in children with Down syndrome K. Barisnikov (Koviljka.Barisnikov@unige.ch)*, A. Lachavanne & C. Straccia *Department of Psychology, University of Geneva Aim: Socio-cognitive and emotional abilities of Down syndrome (DS) children were compared to typically-developing children (TD). The relationship between the abilities and the social behavior of DS children were also examined. Method: Sixteen DS children (CA = 12.5 years; SD = 2.7) and 16 TD children (CA = 5.4 years SD = 1.44), matched on gender and a receptive vocabulary task, were assessed with a wide range of tasks from the Socio-Cognitive Battery (Barisnikov & Hippolyte, 2010). DS children were also assessed with Developmental Behavior Checklist-DBCTeacher (DBC-T) and the Social-Adaptive Skills Questionnaire (SASQ). Results: On emotion tasks DS children showed difculties in processing anger (p < 0.001) and neutral (p < 0.001) expressions. Although the attribution of sadness (p < 0.001) and anger (p < 0.047) were problematic compared to the TD group, fear and happy emotions were not. The Social Reasoning Score in the DS group was negatively correlated (Spearmann) to Disruptive/Antisocial and Communication Disturbances subscales of DBC-T. The Disruptive/Antisocial subscale was negatively correlated to social skills, respect of social rules, and social acceptance of the SASQ. Conclusion: The relationship between executive function and socioemotional processing abilities in promoting adapted social behavior in DS children will be discussed. Feelings and friendships: A study of autism, empathy and relationships A. Carrellas (ann.carrellas@wayne.edu)*, P. Samuel & B. LeRoy *Developmental Disabilities Institute,Wayne State University, Michigan, US Aim: We postulated that low levels of empathy impair the ability of individuals with autism spectrum disorder (ASD) to form and maintain social relationships, which leads to social isolation, loneliness and depression. The purpose of this study was to test if empathy can mediate the effect of the severity of autism on social functioning. Method: Web-based survey data was collected from 99 participants. The data was analyzed using SPSS 19.0. A multivariate path model was specied using AMOS 19.0 to test our hypotheses. Results: Severity of autism had a signicant inverse effect on the level of empathy ( = 0.67). Empathy had a signicant effect on the number of close friends ( = 0.39). The number of close friends in turn had had a signicant but inverse effect on the extent of loneliness ( = 0.29) and the severity of depression ( = 0.31). Conclusions: These ndings support the conceptualization that empathy does mediate the relationship between autism, social isolation, loneliness and depression. Explicit teaching and support of empathy and friendship skills would be helpful to individuals who have ASDs to assist them in forming social connections and close friendships. Examining behaviour and emotional problems in preschool children with developmental delay K. M. Gray (kylie.gray@monash.edu)*, C. M. Keating, D. J. Sweeney, S. L. Einfeld & B. J.Tonge *Centre for Developmental Psychiatry & Psychology, School of Psychology & Psychiatry, Monash University, Australia Aim: Research has established that behaviour and emotional problems occur at a signicantly high rate in young people with intellectual disability and decline slowly over time. Comparatively less is known about the nature and presentation of such difculties in preschool children with developmental delay (DD). This study examined behaviour and emotional problems in preschool children and associations with maternal and paternal psychosocial distress. Method: The rst stage of this study involved the development of a measure designed to examine behaviour and emotional problems in preschool children with DD. This measure, the Developmental Behaviour Checklist-Under 4, was then used to examine behaviour problems in a community sample of children aged 1848 months with, or suspected of having, DD. Results: Data will be presented on the rate and presentation of behaviour problems, along with associations with age, gender and developmental level. The relationship between child behaviour problems and maternal/paternal psychosocial distress will also be explored. Conclusions: Greater understanding of the presentation of behaviour and emotional problems in early childhood will facilitate the development of specic early interventions. This may also provide insight into the origins of severe behaviour and emotional problems that can be observed in later childhood and adolescence.
Symposium: Technology supports and persons with ID Better eating: Theres an app for that! Investigating and developing a digital therapy for children with intellectual disability I. J. Meezen (mondcircus@gmail.com)* *MouthCircus, MeeZje Publishing, The Netherlands Aim: The Mouth Circus Method is an existing treatment program to improve the eating, drinking and communication of children. Eating disorders are more often seen in children with physical and intellectual disabilities. The children need more intensive and stimulating therapy in order to give them access to healthy foods. A structured approach with small steps and progress tracking is important.We decided to investigate the possibilities of developing a digital version suitable for the new generation of tablet computers. The new technology should enable a higher level of interaction and motivation for the patients and therapists. Method: For this study we interviewed 25 users of the Mouth Circus Method who work with varied patients in the Netherlands. We created a questionnaire and interviewed them. Based on their feedback we made a project plan for the software project. Results: We developed a software application for tablets and websites. This app uses modern technology to motivate the children and support the therapist. Conclusions: The feedback from the eld yielded valuable information. Using the digital version on a tablet allows quick and easy access to the therapy and motivates the patient to improve. Computer AideD Information (CADI): Accessible information reconceived M. P. Waight (mary.waight@berkshire.nhs.uk)* & W. J. Oldreive *Berkshire Healthcare NHS Foundation Trust, England, UK Aim: Accessing differing forms of complex information is pivotal to engagement. The project aimed to facilitate individual access when there were complex needs including: functional illiteracy, limited understanding of language and abstract ideas or sequences, forgetting information, need for prompting to help with task completion or decision making, physical inability to turn pages, and inability to see materials. Method: (1) Individual screening process including: receptive language, verbal reasoning skills and literacy skills. (2) If there were functional literacy needs, creation of CADI materials. (3) Review of success. This involved both retention and use of specic information. Results: Positive feedback has been received from individuals and results have supported decision making. The project has been nominated for awards locally and money has been provided to enable research. Conclusions: Much traditional accessible information involves various forms of easy-read information. The CADI format allows a different tool to be used that overcomes many of the access barriers to this format. This presentation will provide a general overview with reference to: the pathway and screening tools employed; demonstration of sample materials; and the review strategies employed. Norwegain teachers experiences of supporting adults with intellectual disability to participate in a virtual world environment S. Balandin (susan.balandin@himolde.no)*, J. Molke-Danielsen, S. B. Mjelve, R. Gunnerd, E. Rnnekleiv & B. Svendsvik *Molde University College, Norway Aim: Little is known about how adults with intellectual disability use virtual worlds for leisure activities including social interactions. We argue that virtual worlds provide a platform for adults with disability to interact with others on an equal footing as they can choose whether or not to disclose their disability. The aim of this project was to explore how teachers who supported ve adults with mild intellectual disability viewed the experience. A second aim was to discuss the difculties that their students experienced and how the teachers helped the students to overcome these. Method: Indepth interviews were conducted with four teachers who participated in the project. Interviews were transcribed verbatim and were analysed qualitatively using a content analysis. Results: Preliminary analysis indicates that limited literacy, limited communication, a lack of computer expertise, and transport problems all impacted on the experience. Teachers were required to enter the virtual world with the students in order to provide support but were able to remain on the periphery of interactions unless a problem arose. Conclusions: Teachers in adult education are well placed to support students wishing to access virtual worlds. Ongoing support is needed. This will be further discussed in the presentation.

Symposium: Evaluating reading interventions for children with Down syndrome Teaching early reading skills to young children with Down syndrome S. Buckley (sue.buckley@dseinternational.org)*, R. Baxter, S. Bennett, G. Bird & J. Hughes *Down Syndrome Education International, University of Portsmouth, England Aim: This study evaluated the early word reading and phonics skills of preschool children with Down syndrome (DS). Method: Children followed a language and reading programme designed to teach sight words in meaningful contexts and a phonics intervention which targeted sets of c-v-c rhyming words. Early intervention staff demonstrated activities with the child in monthly sessions and parents continued the teaching activities at home. The effect of the intervention was evaluated over 18 months: 40 children with DS aged 2 years 3 months to 4 years 2 months at the start of the study were assessed pre- and post-intervention on standardised and bespoke measures of language and reading. Results: Post-intervention data showed that the children had mean letter sound and word reading age scores that were appropriate for chronological age, despite signicant language delays. Progress on both reading measures was signicantly correlated with baseline language skills. Signicant variation in phonics skills was found. Conclusions: Teaching programmes which target sight word learning and phonics can be effective for developing the reading skills of young children with DS. Reading and language intervention for children with Down syndrome: Outcomes from a RCT K. Burgoyne (kelly.burgoyne@dseinternational.org)*, F. Duff, P. Clarke, S. Buckley, M. Snowling & C. Hulme *Down Syndrome Education International, University of Portsmouth, England Aim: This paper reports the rst randomized controlled trial of a reading and language intervention for children with Down syndrome (DS). Method: 57 children with DS aged 510 years, in mainstream primary schools, were randomly allocated to intervention (40-weeks intervention) and waiting control (20-weeks intervention) groups. Trained teaching assistants delivered intervention to individual children in daily 40-minute sessions. Children were assessed before intervention (t1), after 20-weeks of intervention (t2) and after 40-weeks of intervention (t3). Results: At t2, the intervention group made more progress on measures of word reading, letter-sound knowledge, phoneme blending and taught expressive vocabulary (effect sizes 0.230.54). Effects did not transfer to wider measures of literacy and language. Though the intervention group remained ahead of the control group on most outcome measures at t3, effects were not signicant at this time. Children who were younger, had better receptive language skills at the start of the study, and received more intervention sessions made more progress. Conclusions: Intervention delivered by trained teaching assistants in school produced gains in reading and language for children with DS when compared with routine classroom practice. Gains were seen in skills directly taught with little evidence of generalization at this time.
Symposium: Evaluating reading interventions for children with Down syndrome (continued) Effects of a targeted blending programme on the reading and phonological skills of children with Down syndrome K. Burgoyne (kelly.burgoyne@dseinternational.org)*, F. Duff, P. Clarke, S. Buckley, M. Snowling & C. Hulme *Down Syndrome Education International, University of Portsmouth, England Aim: This paper presents outcomes from a teaching programme targeting the blending skills of children with Down syndrome (DS). Method: Ten (10) children with DS aged 710 years, in mainstream primary schools, received 6 weeks of daily intervention designed to support phonemeblending skills. A training DVD and scripted teaching sessions were provided to teaching assistants who delivered intervention to individual children in daily10-minute sessions. Children were assessed on reading and phonological measures at two time points over 3 months: before training (baseline), and immediately after the 6-week training programme. Results: Baseline data has been collected, which will be compared to post-intervention data (data collection November 2011) to explore gains on standardised and bespoke measures of word reading, decoding, phoneme blending, letter sound knowledge, phonological awareness and spelling. Data from individual children will be used to examine individual differences in progress. Conclusions: The efcacy of the programme in supporting the development of blending and reading skills in children with DS will be discussed. The results will also be discussed in relation to the literature on reading development and literacy instruction for children with DS. Story building: Home based reading comprehension intervention for children with Down syndrome K. Burgoyne (kelly.burgoyne@dseinternational.org)*, P. Clarke, S. Roberts, S. Mengoni & H. Nash *Down Syndrome Education International, University of Portsmouth, England Aim: This presentation introduces a pilot project which aims to develop and trial a parent-delivered intervention to support the reading comprehension skills of children with Down syndrome. Method: A case-series design is used to assess the progress of 68 children with Down syndrome who have word reading skills that are in advance of their comprehension skills, over six week control and intervention periods. The intervention targets four components that are key to reading comprehension success: vocabulary, narrative, inferencing and strategy use. Activities are based around segmented paragraphs from published storybooks and are visually supported using word webs, photographs, and illustrations. Results: Data from baseline and after training will be used to explore progress on a range of standardised and bespoke measures of comprehension and related skills. Qualitative feedback from parents will also be presented to address issues regarding practical delivery, perceived impact of intervention, and parent/child enjoyment. Conclusions: The impact of the programme on the comprehension and related skills of children with Down syndrome will be discussed. The results of the study will also be discussed in terms of the feasibility of conducting a larger trial of the intervention.

Sympsoium: Communication interventions Gesture in a communicating world M. Allan (mmallan@netspace.net.au)* *International Society for Augmentative and Alternative Communication (ISAAC), Australia Aim: Recording gesture is difcult. It is rarely mentioned in research, or even acknowledged it exists. It is part of the culture of Augmentative and Alternative Communication (AAC). Gesture is a very real part of communication and is widely used. In this very small study of a workplace, the author tries to understand the extent of the use of gesture and the familiarity of it in everyday use. Method: The methodology is by observation and notation over 12 days in June 2011. The participant, who is also the author, is a person who uses AAC in an intense communicationbased workplace. Results: The communication and understanding between work colleagues works well, but outside the team gesture is used less. The team builds a culture of its own. Social conversation, work-related issues, and lunch breaks are very important to social cohesion and harmony of a productive workforce. Conclusions: Gesture is a quick and effective interactive tool of communication. The AAC community use gesture frequently so they can be on equal terms with the communicating world. However, gesture must be clearly understood to make it work. Training support workers in key word signing using video feedback K. Meuris (stien.meuris@med.kuleuven.be)*, B. Maes & I. Zink *Experimental Otorhinolaryngology, Department of Neurosciences, Katholieke Universiteit Leuven, Belgium Aim: Key word signing (KWS) is a means of AAC often used with adults with intellectual disabilities. Good KWS-knowledge of support workers is crucial to successfully implement KWS in a service. A previous surveystudy indicated the need for better KWS-training methods. Since good results have been reported using video feedback in training various other skills in support workers, this technique was applied in a KWS-training. Method: During 5 weeks, a weekly KWS-training was organized for 46 bachelor student support workers, divided in two groups. Group 1 received classic KWS-training; group 2 received KWS-training using video feedback. One hundred signs were taught. They were selected using a multivariate stratied sampling method, taking into account conceptual, iconic and motor sign characteristics. Knowledge of the 100 signs was tested 1 week after training, both isolated as in sentences. Results: Preliminary results show that sign-knowledge is signicantly better in isolation than in sentences for both groups. Sign-knowledge in sentences is signicantly better in group 2 compared to group 1. Error analysis shows a number of specic error proles. Conclusions: Video feedback is a valid training method in teaching KWS to support workers. Better results are obtained compared to KWS-training without video feedback. MORE: Building the communication and learning skills of people assessed as intellectually impaired A. Emerson (anne.emerson@ntu.ac.uk)* & J. Dearden *Nottingham Trent University, City of Nottingham, UK Aim: To introduce a radical new approach, which questions the assumptions made and expectations placed upon people with the label of severe intellectual and communication impairment. Method: An evaluation of MORE (Means, Opportunities, Reasons and Expectations) through an action research project in two special schools over several years involving single and combined case studies. We go beyond existing approaches to augmentative and alternative communication (AAC), which tend to focus on people with physical disabilities, to suggest ways of engaging normally unresponsive individuals who would generally be considered as not yet ready to communicate. Results: Our research evidence shows the power of the expectation that someone will communicate, provided they have access to the correct means, and are motivated through provision of a wide range of appropriate opportunities, coupled with persistence on the part of the communication partner. Conclusions: The MORE approach can increase peoples means of communicating, identify their reasons, and provide more and wider opportunities for communication.
Symposium: Cognitive issues and strategies Specic cognitive disfunctions in intellectual developmental disorders M. O. Bertelli (mbertelli@crea-amg.org)*, N.Varrucciu, D. Scuticchio, C. Corezzi, F. DAgostino & C. Del Furia *Centro Ricerca ed Evoluzione (AMG Research and Evolution Centre), Firenze, Italy Aim: Intellectual developmetal disorders (IDD)seems to represent a metasyndromic group rather than a unique nosological entity. They include a wide range of specic cognitive impairments with a signicant impact on Intelligent Quotient (IQ). The purpose of this paper was to provide a critical review of the literature on specic cognitive dysfunctions in people with IDD and on their relationship with main measures of intelligence. Method: A systematic mapping of the literature was conducted using engines available on Medline, EBSCO, Medmatrix, NHS Evidence and Cochrane Library. Results: Findings of recent studies of genetics, neuroimaging and neurophysiology identied more correlations with cognitive functions than with IQ scores. In cases of more severe disability IQ shows little sensitivity to individual differences. Other ndings suggest that functioning limitation and problem behaviour correlate more with impairment of specic cognitive proles than with reduction of the overall intelligence quotient. Conclusions: Data suggest that IQ has important limits as both an intelligence measure and a diagnostic criterium. Moreover, there is a lack of standardised instruments for assessment of specic cognitive functions. The identication of genetic, neurophysiologic and neuroanatomic substrates of specic cognitive dysfunctions would be desirable to better explain the complex construct of intelligence. Memory development in preschoolers with Down syndrome L. Roberts (lynette.roberts@unsw.edu.au)* & J. Richmond *University of New South Wales, Sydney, Australia Aim: Current evidence suggests that adults with Down syndrome (DS) may have unique decits in learning and memory processes that depend on the hippocampus; however it is largely unclear how this kind of memory develops in children with DS. Method: Preschoolers with DS (35 years old) and typically developing children (1836 months old) age-matched on receptive language scores were tested on a battery of tasks that included eye-tracking and behavioural tasks that have been shown to either depend on, or be independent of the hippocampus. The test batteries were administered over two testing sessions, with a delay of 24 hours between them to investigate encoding and retrieval memory processes. Results: Preliminary results from 10 preschoolers with DS and 10 controls suggest that when children are age matched on receptive language scores there are no differences in learning and memory abilities. Children with DS performed equivalently to controls both on tasks that have been shown to depend on, or are independent of, the hippocampus. Conclusions: Our results show that disability-specic memory decits documented in adults with DS are not yet evident in the preschool years, suggesting that early childhood may be a critical time frame for early intervention. Positive effects of tactile devices on analogical reasoning tasks in individuals with intellectual disability C. Denaes (caroline.denaes@gmail.com)* *Faculty of Psychology and Education Sciences, University of Geneva Aim: Individuals with intellectual disability (ID) show a lower cognitive development and lower memory capacities compared to typicallydeveloping (TD) individuals of the same mental age. As analogical tasks involve memory, they represent difcult tasks for them. Our aim was to prove that external memories could allow the ID participants to get similar performances to TD participants. Method: A computerized test using a touch screen was created, composed of two parts. The rst part was a construction version, which proposed external memories and ofoaded the participants memory, whereas the second part was a control version, which did not propose such a support and overloaded their memory. Results: Our results indicated that in the classic version, TD children performed better than ID students, but in the construction version there were no signicant differences between the groups. Conclusions: It seems an appropriate material allows better performances for this population in analogical tasks. Our study showed that individuals with ID were able to solve cognitive tasks, which went against what is generally supposed by researchers and professionals. External memories enabled our participants to go beyond their memory span limit. Moreover, our study improved the participants level of attention and erased their motor skills decits.

Symposium: Self-regulation and metacognition Routinised behaviours in individuals with intellectual disabilities S. Glenn (s.m.glenn@ljmu.ac.uk)*, C. Cunningham,V. Prasher & P. Glenhomes *Liverpool John Moores University, UK Aim: Ritualised and compulsive-like behaviours (RCBs) are commonly seen in typically-developing children. Because of this universality, it is believed that they have important functions in self regulation and cognitive and social-emotional development as they simplify complex situations (for example, in childrens repeated play patterns and games). They help to reduce and master anxiety and develop a sense of security (e.g. in bedtime routines). Other research has found a positive correlation between RCBs and fears. RCBs are also commonly seen in both children and adults with intellectual disabilities, when they may be more intense but have adaptive functions in early development (Glenn & Cunningham, 2007). Method: A re-analysis of that data found a signicant relationship between worries and intensity of RCBs (excluding VMA and CA). A recent study with 125 adults with Down syndrome aged 2040 years also found high levels of RCBs. Results: RCBs were not associated with mental health problems. However, for this group also there was a signicant correlation with worries. Conclusion: These results conrm previous ndings, and suggest that for individuals with intellectual disabilities RCBs have adaptive functions and are not usually pathological.
Symposium:Visual impairment and visual processing Strategy use, and eye tracking in Raven Performance among adults with intellectual disability and Down syndrome H. Lifshitz-Vahav (hefziba@013net.net)* & E.Vakil *School of Education, BarIlan University, RamatGan, Israel Aim: The goal was to explore information processing and strategy use as expressed by eye movement in Raven matrices performance among adults (aged 2150) with non-specic intellectual disability (NSID) and with Down syndrome (DS) versus typically-developed (TD) individuals of the same mental age (MA). Method: The sample includes 23 adults with NSID, 15 adults with DS, and 35 children with TD matched for mental age. Participants solved the Ravens Colored Progressive Matrices and ve items from the Raven Standard Progressive Matrices while having their eye movements monitored. Results: The percent of correct answers was signicantly higher for the TD group compared to two ID groups. Eye movement pattern indicated that the TD group spent more time on the matrices before shifting to the options, than the two ID groups. The TD group made signicantly less switches, than the ID groups. No differences were found between participants with NSID and with DS. Conclusions: The difference in eye scanning between the groups was interpreted as a reection of constructive matching/response elimination strategies (BethelFox, et al., 1984; Vigneau et al., 2006), for the ID and TD respectively. Such ndings have the potential to help clinicians develop remediation strategies to ameliorate performances. Information access for individuals with intellectual disability and profound visual impairment W. Oldreive (warren.oldreive@berkshire.nhs.uk)* & M. P. Waight *Berkshire Healthcare NHS Foundation Trust, England Aim: Making complex information accessible to individuals with an intellectual disability can be a challenging process. The ability to access information is pivotal to this process. Empowering individuals to independently control information maximises their chances for inclusion. The presence of profound visual impairment can affect the ability to access: many traditional forms of language assessment; information which are visual-based (including Easy Read and Talking Mats); and traditional methods of computer access. This paper explores the process used to support one individual to understand a tenancy agreement. He had no prior experience of using computer hardware. Method: It begins with the bespoke assessment tool that was created to evaluate his understanding of language and basic reasoning skills. It then explores the process used to enable access to computer hardware using two switches and auditory scanning. Reference is then made to the specic program created to support understanding of two-switch function. Individual control was achieved without the need to access hardware directly. The software program developed will be explained and demonstrated, before introducing the review format employed. Results: Individual signed tenancy agreement. Conclusion: Positive outcome achieved. How to assess higher visual processing dysfunctions in children with ID? Application of remote eye tracking F. H. Boot (eurboot@yahoo.com)*, J. J. M. Pel, J. van der Steen & H. M. Evenhuis *Erasmus University Medical Center, Rotterdam, The Netherlands Aim: Assessment of higher visual functions requires cooperation of participants, which can be problematic in children with intellectual disabilities (ID). We applied remote eye tracking to quantify deviating visual orienting responses in children with ID in terms of reaction times to visual stimuli. Method: As a rst step, we included 127 children (214 years) with developmental and/or intellectual disabilities. We presented visual stimuli on a remote eye trackers monitor and simultaneously measured reexive eye movements to a cartoon, form, and motion stimulus. The reaction times to xation (RTF) values to the stimuli in the ID group were compared with RTF values of an age related control group. Results: A majority of the children with ID had delayed RTF values: 72% to cartoon, 47% to form, and 38% to motion. A variety existed to which visual stimuli children had a delayed RTF. Conclusions: Our data show that children with ID have delayed eye movement responses to visual stimuli. This may suggest that this group has increased risk for higher visual processing dysfunctions and a variety of visual dysfunctions may exist per child. The next step will be to relate deviating orienting responses to ocular motor disorders and types of brain damage.
Enhancing meta-cognitive thinking in students with intellectual disabilities P. Shavit (pninashavit@gmail.com)* & S. Reiter *Beit Berl College, Israel Aim: The goal of this study was to compare two teaching methods for the enhancement of meta-cognitive thinking in students with cognitive disabilities. Method: Two teaching methods were compared: the cycle of internalizing learning (C.I.L) (Reiter, 1997; Shavit & Reiter, 2007) an innovative method based on group learning and traditional, frontal instruction. The study sample included 74 students (age 1621), divided into two groups. The subject areas compared were education for sexuality and family life and career education. The C.I.L. group emphasized situations analysis, problem solving, and reection on the learning experience what have I learned about myself and about others? The second group received traditional frontal instruction. Students completed pre- and post-intervention questionnaires, and some sessions were observed and videotaped. Results: Statistical ndings and qualitative analyses and comparisons indicated that students in the C.I.L group were better able to solve problems and reach meta-cognitive insights than their counterparts. Conclusions: The C.I.L. methodology emerged as a superior method for enhancing meta-cognitive thinking in students with cognitive disabilities.

Symposium: Movement integration Sequential aiming with two limbs and the effect of a reversal in movement direction in individuals with Down syndrome N.-E. Reilly (pepa2d@bangor.ac.uk)*, G. Lawrence, M. Khan,T. Mottram & S. Mourton *School of Sport, Health and Exercise Sciences, Bangor University,Wales Aim: The present study investigated the inuence of movement direction in individuals with Down syndrome (DS). Tapping movements were performed in single limb and two limb conditions. The movement integration hypothesis suggests that the One Target Advantage (OTA) would fail to materialise when a reversal in movement direction is required. Evidence of this would indicate that individuals with DS integrate components of a complex action in a similar fashion to neurologicallytypical adults (NTA). Methods: Adults with DS and NTA performed 5 movement sequences: single target, 2-target extension, 2-target reversal, 2-target extension with two limbs, and 2-target reversal with two limbs. In the two-limb conditions, participants switched limbs at the rst target. Results: As predicted, adults with DS had signicantly slower RT and MT than their NTA peers. Results for the DS group indicated that in both single and two limb reversal movements, the OTA failed to materialise. Conclusions: The inuence of a reversal movement on the OTA phenomenon seems not to be limited to neurologically-normal individuals. This suggests that individuals with DS plan and execute sequential aiming movements in a similar fashion to their neurologically-normal counterparts.
Symposium: Play interventions Play intervention for children with ASD and ID Y. Dijkxhoorn (dijkx@fsw.leidenuniv.nl)* *Department of Child and Adolescent Psychopathology, Leiden University, Netherlands Aim: Play is an important developmental domain for children with autism spectrum disorders (ASDs) because of its positive relationship with social and communicative functioning in later life. Several forms of interventions for children with autism have been developed to stimulate play. However, there has been limited scientic research regarding the effect of play interventions, especially with a control condition design. Method: In this study the effectiveness of play training was studied over 22 individual sessions provided for thirty low-functioning children with an ASD, aged 310 years. Twenty-nine children were assessed under a waiting-list condition. The play level and number of playing acts during pre-, post- and three month follow-up were assessed. Parents and teachers play observations were also included as measures. Results: Results show that children who received play training showed signicantly more acts of play in comparison to the children in the control condition. Measures of adaptive and cognitive functioning were related to the effectiveness of the play training. Conclusions: A relatively brief and low-cost play intervention showed promising results in stimulating the play behavior of children with ASD and ID. This type of intervention can be administered in integrated settings. Trainers do not need a therapeutic background.
Motor behaviour in concurrent task condition in subjects with intellectual disabilities G. Albertini (giorgio.albertini@hotmail.it)*, S.Vimercati, C. Condoluci & M. Galli *IRCCS San Raffaele Pisana, Tosinvest Sanit, Italy Aim: Daily activities often require the simultaneous performance of more concurrent tasks. The main aim of this study was to compare performance in single vs concurrent task conditions in subjects with intellectual disabilities. Method: Fifteen (15) healthy subjects and a group of 20 subjects with intellectual disabilities executed a single motor task (i.e., walking and hand tapping) and then a series of concurrent tasks (walking and go over an obstacle, hand tapping with an obstacle). The data regarding the acquisition of the movements was done by means of a 3D motion analysis evaluation. Results and Conclusions: The results highlighted a general loss of movement efcacy in subjects with intellectual disabilities that was more evident when they were performing a concurrent task. The preliminary results showed that the subjects with intellectual disability seemed to have an altered perception of the obstacle as well as the motor behaviour in the obstacle condition (both in walking as well as in hand tapping) in statistically different respects to the control group subjects.
Towards a motivating play environment for children with Down syndrome. A parents perspective G. G. M.Testerink (ergotherapie.mne@sheerenloo.nl)*, E. Steultjens & A.-S. Dolva *Department of Occupational Therapy, `s Heeren Loo, Netherlands Aim: The aim of this study was to gain a better understanding of how parents view and provide a play environment for their children with Down syndrome to motivate them to engage in play. Method: Five Dutch boys with Down syndrome (aged 3449 months) and their mothers participated in the study. The techniques and procedures are based on a grounded theory approach. Data was collected through observations and interviews in the home environment. Data was analyzed using a constant comparative method. Results and Conclusions: Preliminary analyses showed that parents consider a motivating play environment for children with Down syndrome to consist of elements not very different from typically-developing children. How parents provide a motivating play environment for their child with Down syndrome is determined by how the childs development is interpreted. Parents monitor development through play situations and they apply different types of strategies for further development within the presented elements. The selection process of strategies is highly inuenced by contextual factors. Extensive results on the parents views and doings and their relations will be presented at the conference.

Posters: Context related dyadic social interaction in adults with Down syndrome K. Barisnikov (Koviljka.Barisnikov@unige.ch)* & A. Berrino *Department of Psychology, University of Geneva, Switzerland Aim: The goal of the present study was to assess the inuence of different activities on social interaction in adults with Down syndrome (DS). Method: Twenty-three adults with DS (CA = 31,4; SD: 10,1) with mild to moderate intellectual disability (ID) were assessed using the Developmental Behaviour Checklist-DBC-A (Mohr et al., 2005). Two different dyadic interactions between DS adult and caregiver were lmed: (1) unstructured (informal conversation); and (2) competitive (game). Both were coded using the Riverside Behavioral Q-Sort (RBQ) (Funder et al., 2000). Results: Signicant differences in the social interaction of SD adults were found between the two contexts. The Implication and Self-condence measures on the RBQ scales were signicantly higher (p < .05) in the competitive situation. Furthermore, the Self-absorbed sub-sale (DBC-A) was negatively correlated with three scales of RBQ (including Positive affect). Conclusions: The positive inuence of structured competitive social context should be taken into consideration during rehabilitation programs with DS adults. However, certain behaviors, which seem to be determined more by the participants personality traits (sociability and compliance) than by social context, remain constant. Re-education of social behavior difculties in adults with intellectual disabilities K. Barisnikov (Koviljka.Barisnikov@unige.ch)* & A. Lachavanne *Department of Psychology, University of Geneva, Switzerland Aim: We aimed to remediate social behavior difculties in adults with intellectual disability (ID) by improving social and emotional processing abilities. The Socio-Emotional Re-Education Program (SERP) for people with ID (Barisnikov, 2008, adapted from Izard, 2004) was used. Four learning levels were used: perceptual (recognition, labeling), associative (events and emotion), conceptual (problem solving), and behavioural (emotional regulation). Method: Thirty-two adults participated in SERP program and 12 did not (control group). All 44 adults were assessed in preand post- re-education periods with The Socio-Cognitive and Emotional Battery (Barisnikov & Hupolytte, 2010) and with the Developmental Behavior Checklist (DBC-A, Mohr et al., 2005). The participants, divided into 8 groups, followed the program for 4 months, one hour per week. Results: Post re-education assessment showed participants attaining signicant improvement on the Social Resolution task (p < .05), and a marginal improvement on the Emotion Attribution and on the ToM tasks. Furthermore, on DBC-A, they obtained signicantly lower global scores (p < .001) as well as on Disruptive behavior, Communication disturbance and Anxiety sub-scales (p < .05), compared to controls. Conclusion: The SERP provided an interesting tool for the improvement of socio-emotional processing abilities and social behavior in adults with ID. Its impact on everyday life will be discussed. A RCT of working memory training for children with Down syndrome S. Bennett (stephanie.bennett@dseinternational.org)*, J. Holmes & S. Buckley *Down Syndrome Education International, University of Portsmouth, England, UK Aim: Individuals with Down syndrome have short-term memory difculties, particularly in the verbal domain. These difculties are thought to contribute to their overall prole of cognitive, language, and speech delay. Published research has shown that a computerised memory-training programme can signicantly improve memory in typical children with low working memory or ADHD. This study aimed to evaluate computerbased memory training with children with Down syndrome. Method: A randomised controlled trial was conducted with 24 children, aged 712, over a 6-month period at school. The programme used in this study was Cogmed JM, a computer-based visual memory training programme that children can work through on their own, with support from a teaching assistant. This is the rst independent evaluation of this programme for children with Down syndrome. Results: Children who completed the programme signicantly improved on trained (Cogmed JM) and non-trained memory measures (visual memory scores on the AWMA). Conclusions: This demonstrates that this computer-based method of memory training can be feasible and benecial for children with Down syndrome. Implications and limitations are discussed. Posters:
Autistic proles in young children with Down syndrome: What is the picture over 3 years? S. Buckley (sue.buckley@dseinternational.org)* & S. Bennett *Down Syndrome Education International, University of Portsmouth, England Aim: An increasing number of children with Down syndrome (DS) are being given an additional diagnosis of autistic spectrum disorder (ASD). However, diagnosing autism in these children is not straightforward. This study aims to investigate the way that behaviours which could be symptomatic of ASD develop and change over time in young children with Down syndrome. Method: We have collected data on the autism screening tool, M Chat, for 36 children with Down syndrome at 3 time points. Their mean age range at T1 was 32.8 months (range 2446), at T2, 44.8 months (range 3658), and at T3 69.03 months (range 6084). We have standardised measures of cognition, language, temperament, and motor development, as well as data on health, family and services. Results: At T1, 15 children (41.67%) scored in the at risk range; at T2, 6 (16.67%); and at T3, 4 (11.11%). An item by item analysis showed the pattern of failed items varied and few other children in the group failed the same items. Associations with other measures are still being explored. Conclusions: The data suggests that a diagnosis of ASD should not be considered before 56 years in children with Down syndrome. Using visual habituation paradigm in adults with PIMD: Two case studies M. Chard (melissachard@gmail.com)* & J. L. Roulin *University of Grenoble, Laboratoire Interuniversitaire de Psychologie Centre Arthur Lavy, France Aim: Although a certain number of scales and inventories are available to investigate the psychological development of children or adults with profound intellectual and multiple disabilities, direct cognitive assessment is still a challenge for all psychologists. Sensory and motor impairments represent a real obstacle to the expression of an individuals potential. However, a lot is known today about the cognitive functioning of infants thanks to standardized developmental tasks based on the habituation paradigm. The present preliminary study tries to establish a new approach to cognitive assessment in adults with PIMD, inspired by paradigm used in infancy research. Method: Two adults with PIMD were repeatedly shown a pattern until they reached a proportional criterion of habituation. A new pattern was then introduced following the same procedure. Recovery of xation time was found for both of the subjects. Results: The interpretation of the two habituation proles reected individual differences in encoding and perceptual learning. These rst results seem to corroborate the relevance of visual habituation paradigm with PIMD adults. Conclusions: Results open an interesting and useful window in cognitive skills assessment. Adaptive behavior proles in specic etiologies: Down syndrome and autism spectrum disorders L. Gomez (gomezlaura@uniovi.es)*, P. Navas, M. .Verdugo, B. Arias, L. E. Gmez,V. Guilln, & E.Vicente *Universidad de Oviedo, Spain Aim: Since its inclusion in the diagnosis of intellectual disability (ID), the diagnostic criteria of signicant limitations in adaptive behavior has become very important and researchers have tried to conrm the existence of a behavioral phenotype that facilitates the diagnosis between groups with different etiologies. The aim of our research has focused on the study of the adaptive behavior prole in individuals with autism spectrum disorder (ASD) and Down syndrome who participated in the development of the Diagnostic Adaptive Behavior Scale (DABS) in the Spanish context. Method: After developing the DABS and assessing its goodness of t with IRT models, it was applied to a sample of 1,047 people with, and without, intellectual disabilities. The cause of intellectual disability was Down syndrome in 172 cases, and 92 people had ASD as another condition. Results and Conclusions: Once we studied the differences in adaptive behavior proles between both groups, signicant differences were found, both depending on the type of skills (conceptual, social or practical) as a function of age.

Posters: Cochrane CAFE (Communication Access Framework and Evidence): A scoping study for future systematic reviews on communicatively vulnerable populations in healthcare settings B. Hemsley (b.hemsley@uq.edu.au)*, E. Worrall, J. Kis Rigo, R. OHalloran & S. Hill *The University of Queensland, Australia Aim: The aim of this study was to nd relevant studies in Cochrane CENTRAL for prioritizing future systematic reviews on interventions improving communication for communicatively vulnerable populations in clinical settings. Method: The authors: (a) developed a conceptual framework to guide search terms on interactions involving communicatively vulnerable patients across all potential populations, providers and healthcare settings, and (b) identied populations vulnerable to poor healthcare communication groups with specic health conditions. The third author searched CENTRAL and retrieved 9635 potentially relevant studies, that the rst two authors screened by the inclusion criteria: Does the trial relate to health communication between patient and provider in a clinical setting; and report a health or communication outcome? All trials were coded by consensus in Endnote and 7755 were excluded on title or abstract. All available full texts for 1880 studies in English were retrieved and studies not meeting the inclusion criteria were excluded. Results and Conclusions: In total, 330 studies were coded as relevant which included 75 intervention trials to improve communication in vulnerable populations in healthcare settings. A descriptive overview of the trials are presented and areas for future systematic review are proposed. Inuence of computer software and video modeling multi-media on social-skill acquisition among students with intellectual disabilities O. Hetzroni (hetzroni@edu.haifa.ac.il)* & I. Banin *Faculty of Education, University of Haifa, Israel Aim: The purpose of this study was to examine the effect of using assistive technology including educational software and video modeling, alongside group discussions on the acquisition and improvement of social skills among students with intellectual disabilities (ID). Method: Four children with ID participated in a single subject multiple baseline design across three social behaviors. Results: The results have shown that the intervention program for teaching the social skills playing in pairs, entering without a push and taking with permission, signicantly increased the level of implementation of the skills learned, and positive social behaviors increased. Conclusions: Results demonstrate the unique attribution of integrating assistive technologies (computer software and video modeling) for the acquisition, retention, and generalization of the social skills by students with ID as well as the benets of group discussions, enabling both group and personalized instruction. Thus, the results highlight the importance of an intervention program individually designed for each students needs along with group social learning experiences. This presentation will demonstrate research ndings including individual differences and similarities provided through the use of assistive technology and group discussion. Examining executive functions in children with PDD and AD/HD according to ages by the Wisconsin card sorting test Y. Kado (kado@kansai-u.ac.jp)*, Sanada,Yanagihara, Ogino, Ohno, Nakano, Watanabe, Morooka, Oka, Ohtsuka *Department of Psychology, Kansai University, Japan Aim: This study compares executive functions in younger (5 to 9 years) and older (10 to 15 years) children with developmental disorders using the Keio version of the Wisconsin Card Sorting Test (KWCST). Method: Participants included children with PDD and AD/HD whose IQ was 80 and over and age-matched to typically developing children (TD). Scores of categories achieved (CA), perseverative errors of Nelson (PEN), difculties of maintaining set (DMS), numbers of response cards until the rst category achieved (NUCA), total errors (TE) and non-PEN (NPEN) were analyzed. Results: Younger PDD and AD/HD groups showed unfavorable scores in CA, TE and NPEN, and PDD showed additional unfavorable scores in PEN in the second step. Older PDD and AD/HD groups showed unfavorable scores in CA, NUCA and TE in the rst step, CA, DMS, TE and NPEN in the second step. In addition, PDD showed unfavorable scores in PEN and AD/HD showed unfavorable scores in NUCA in the second step. Conclusions: Difculties in utilizing their experiences through the rst step and inadequacy in applying an instruction are speculated among older children with PDD and AD/HD comparing to TD. Posters:
Special Olympics programming for young children: Family perspectives K. Krohn (katherine.krohn@cchmc.org)* *Cincinnati Childrens Hospital Medical Center, US Aim: This presentation describes an exploratory pilot study to evaluate parent perceptions of the benets of the Special Olympics International (SOI) Young Athletes (YA) Program and to better understand the variability in motives for participation. Methods: Participants were parents of 7 children with Down Syndrome enrolled in an 8-week YA program. Semi-structured interviews were conducted with families during the last two sessions. Results: Parent reports were overwhelmingly positive and all indicated intent to remain in YA. Perceived benets and motives for their childrens participation varied signicantly. The majority of families emphasized fun and enjoyment, which is consistent with previous ndings involving older athletes (Harada & Siperstein, 2009). Overarching themes included parents excitement for an early age of entry into SOI programs and desire for their childrens participation and meaningful inclusion. Conclusion: This study highlights the wide range of discerned benets resulting from SOI programming for young children. Discussion focuses on expanding dependent variables beyond motor development in future research, enhancing the delity of program implementation, and the potential for continued program adaptations and developments to serve young children with specic and intensive needs in schools and communities across the world. Difference of age in reading ability and selective attention T. Morooka (gmd20022@s.okayama-u.ac.jp)*, A.Takeuchi, M. Oka, K. Hanafusa,T. Ogino & Y. Ohtsuka *Department of Child Neurology, Okayama University Graduate School of Medicine, Dentistry and Pharmaceutical Sciences, Okayama, Japan Aim: To identify correlations between reading ability, syntactic comprehension, and selective attention, while taking age-related differences into account. Method: Participants were 46 typically-developing children aged 712 years. Reading ability and syntactic comprehension were evaluated using short sentence reading time (SS-RT) and a Token Test (TT). During the TT, the stimuli were presented aurally (TT-A) and visually through printed sentences (TT-V). Selective attention was measured with color-word matching Stroop (cwmStroop) and Go/No Go Task. We evaluated the correlations of the scores of SS-RT/TT with cwmStroop and Go/No Go Task in group Y (range 79 years) and group O (range 1012 years) separately. Results: [Group Y] TT-A showed moderate negative correlations with reaction time and variability of reaction time in the incongruent and neutral condition on the cwmStroop. SS-RT showed a weak negative correlation with correct rate in the neutral and a weak positive correlation with reaction time in the incongruent on the cwmStroop.[Group O] There was a moderate negative correlation between the TT-V and variability of reaction time on Go/No Go. Conclusions: Compared to the older age-group, the younger age-group showed more variety of relationships between listening comprehension, reading ability and selective attention, particularly on the cwmStroop. Analysis of spontaneous communication in children with autism spectrum disorders krinjar J. Stosic (jasmina.cvetko@zg.t-com.hr)* & J. Frey S *Faculty of Education and Rehabilitation Sciences, University of Zagreb, Croatia Aim: Spontaneous communication of preschool children with autism spectrum disorders (ASD) were analyzed using a continuum model with four-level antecedent hierarchy (Carter and Hotchkiss, 2003). Chiang (2008) also used that model to examine communication spontaneity in children and youth with autism. Method: Participants were 33 children with autism spectrum disorders included in regular kindergarten (14 children) and a special preschool setting (19 children). Children were between the ages of 3 and 7 years. Analysis was conducted via naturalistic observations. Each child was videotaped across two days, for 75 minutes per day in their natural preschool setting. Independent observers then coded the communication acts of children using the highest prompt level to determine the level of spontaneity. Results: The results indicated that communicative spontaneity varies along the continuum and across communicative forms, communicative functions, communicative partners, and activities. Conclusions: This analysis will provide implications for improvements to communication programs of preschool children with autism spectrum disorders.

Posters: A new model for breaking bad news to people with intellectual disabilities I.Tuffrey-Wijne (ituffrey@sgul.ac.uk)* *St. Georges Unviversity of London, England Aim: Current models for breaking bad news are inadequate in meeting the needs of people with intellectual disabilities (ID). They are often not told of a life-limiting diagnosis. The task of breaking bad news is often left to carers who are poorly prepared and supported in this. Health care professionals do not know how to communicate adequately with people with ID. Methods: The model was developed following a focus group/ interview study involving 109 participants, including people with ID, family carers, ID professionals, and health care professionals. The ndings were combined with the literature. A preliminary model was developed; 60 stakeholders gave feedback on the model, including a wide range of family carers, professionals and academics. The preliminary version of the model was modied following feedback. Results: The model has four components. (1) Building a foundation of knowledge. Gradually and over time, the person with learning disabilities builds his/her understanding of the way his/her situation is changing because of the bad news; (2) capacity and understanding; (3) the people involved; and (4) the support needed by everyone involved. The model will be visually presented. Conclusion: The model now needs to be tested in practice. Variability of movement time during goal-directed movement task in individual with intellectual disability M. Ushiyama (ushi@kyokyo-u.ac.jp)* *Kyoto University of Education, Japan Aim: To investigate variability of movement time during goal-directed task in individuals with intellectual disability. Method: Eighteen persons with intellectual disability, and 20 without one, participated. They were instructed to move an acrylic plate with a sensor from home position to target position until 10 successful trials were obtained. Mean and coefcient of variable (CV) of movement time both in rst 5 trials and next ones was calculated. 2 2 ANOVA was employed. Results: There was a signicant main effect of group on mean of MT (F (1, 36) = 5.638, p < .05), but no main effect of order and interaction (F (1, 36) = 2.790, n.s. ; F (1, 36) = .726, respectively). There was a signicant main effect of groups on CV of MT ( F (1, 36) = 6.294, p < .05), but no main effect of order and interaction (F (1, 36) = 1.289, n.s. ; F (1, 36) = .281, n.s.). Conclusions: These results indicated that individuals with intellectual disability were slower and more variable in performing tasks than those without one, while both groups showed stable performance during tasks, though the degree of variability was different between groups. Posters:
The Accessibility Triangle: Introduction and practical implications M. Waight (mary.waight@berkshire.nhs.uk)* & W. J. Oldreive *Berkshire Healthcare NHS Foundation Trust, England Aim: To review a model that highlights critical factors that determine the success of accessible information provision. The model refers to the demands placed on the individual by introducing three broad components: code breaking; functional use and memory; and, control and timely access. It does not focus directly on organisational issues although these are referred to. A detailed account of each component will be undertaken, as well as reference to a model to account for variance in ability to functionally use information. The concept of an accessibility passport is introduced as a mechanism to review screening evidence, document previous work undertaken and chart its success. Other practical solutions are discussed. Method: The model was created following a signicant amount of clinical experience and research into the relative strengths and limitations of strategies used. Results: The model has been introduced in national conferences (Communication Matters/RaATE) and to University and staff training sessions. Feedback has been positive. Conclusions: Published material questions the validity of generic accessible information for adults with learning disability. To promote success a variety of different formats must be available, with selection based on individual need. The over-reliance on standard one shoe ts all materials may impact on effectiveness. Developmental characteristics of DAM drawings by mentally disabled children M. Watanabe (kumasan@mx3.mesh.ne.jp)* *Department of Clinical Psychology, Faculty of Social Welfare, Hanazono University, Japan Aim: The aim of this research is early discovery of mental disability and dysgraphia in children from DAM drawings, and improvement of representational activities. Method: The Goodenough Draw-a-Man intelligence test (DAM) was given to 51 mentally-disabled school-age children, and the results analyzed. The test was also administered to nondisabled children of the same mental age (25 four-, 51 ve-, and 38 six-year olds), and the results compared. Results: Developmental characteristics in DAM drawings by mentally-disabled children demonstrated three things few facial features, inability to depict ngers, and inability to depict clothes. Other characteristics included no clear distinction between upper and lower body and poor overall balance in the body. However, their depiction of facial expressions, based on features such as eyes and mouth, cannot be said to be poor. Conclusions: Since the DAM drawings of mentally-disabled children constitute a representation of overall development of self-cognition, and since non-disabled children of the same mental age display the same DAM drawing characteristics, it is possible to determine the mental development of mentally-disabled children from DAM drawings. Mentally-disabled children who have difculty with DAM drawings require rehabilitation that incorporates drawing and other representational activity that is developmentally-appropriate.

Symposium: Early intervention Relationship between etiology and the intervention goals of infants and toddlers receiving early intervention services Z. Stoneman (zo@uga.edu)* & M. Rugg *Institute on Human Development and Disability, University of Georgia Aim: This study examined the content of individualized family service plans (IFSP) for children, birth through two years of age, receiving early intervention services in one US state. There is little empirical data concerning the intervention effort focused on different family and developmental targets. This study sought to understand etiological patterns that exist in the selection of early intervention goals and objectives. Methods: Study data were obtained from a statewide data tracking system used for the collection of information on all children receiving early intervention services. All IFSP goals and objectives were entered into the database in text format, without editing or paraphrasing. Codes were developed related to key areas of child development and family support. Using these codes, researchers reliably content analyzed 39,984 goal/ objective statements contained in the IFSPs of 17,120 children. Results & Conclusions: Clear etiological differences emerged in the patterns of goals/objectives entered on the IFSPs. Certain of these patterns reected the characteristics of children with specic intellectual and developmental disabilities. The origin and meaning of other patterns was less clear. Relevance of the ndings for training early interventionists will be discussed. Symposium: Identity
Education and Employment
Negotiating work based identities of people with intellectual disabilities O. Koenig (oliver.koenig@univie.ac.at)* *University of Vienna, Department of Education, Research Unit of Special Needs and Inclusive Education, Austria Aim: The presentation is part of the presenters dissertation which was carried out within the basic research project Experiences of participation in the biography of people with intellectual disabilities (20082013) at the University of Vienna. The main research question was how biographical experiences of participation and exclusion over the life course have framed work-based identity construction of people with intellectual disabilities to whom access to paid employment has been denied. Methods: Within a participatory qualitative longitudinal design, biographical life course interviews were carried out with twenty adults with ID (aged between 25 and 52 years) over a two year period. Within the analysis both a social-constructionist (life course & structure) and a phenomenological (lifeworld & agency) perspective were applied as a heuristic framework for an inductive process of theory construction (Charmaz 2006). Results: In terms of projective identity construction, the analysis revealed three distinct and uid forms of individual negotiations towards the future meaning of paid employment, ranging from work being no identity goal to being the central and life forming identity project. Conclusion: The study helps understanding biographical dynamics of individual employment aspirations whilst giving guidance for successful intervention. What a difference a decade makes: Exploring intellectual disability and identity in young adult life B. Kelly (b.r.kelly@qub.ac.uk)* *Queens University, Belfast, Ireland Aim: The study explores (a) the impact of family context and service provision on the life experiences of young adults with intellectual disabilities and (b) the intersections of intellectual disability, life course and identity. Methods: This ten year follow up study involved ten young adults with intellectual disabilities aged 1829 years. A qualitative approach was adopted including life story interviews with young adults and their parents, case le reading, and interviews with social care providers. Results: Findings highlight the importance of inter-dependence and illustrate how young adults re-negotiate their sense of self across various settings, including day care, home, and work/college. Young adults often felt restricted by limited service options and the surveillance of nondisabled adults. Key challenges for parents and service providers were managing changing roles and negotiating issues of care and protection. The interplay of these dynamics can enable or diminish opportunities for constructing positive self-identities and making self-determined life choices. Conclusions: Drawing on life course and disability theory, this study provides new insights into the experiences of young adults with intellectual disability that informs our understanding of this life course stage and policy and practice initiatives aimed at improving outcomes for disabled young people. Intellectual disability and cleft lip/ palate:Young peoples appearance self perceptions and psychosocial experiences A. Bates (A.J.Bates@kent.ac.uk)* *University of Kent (Tizard Centre), England Aim: Ascertain and compare the self-perceived appearance and psychosocial experiences of young people with and without intellectual disabilities (ID) who have clefts. Almost half of people who have a cleft lip also have an intellectual or language disability (Ceponiene et al. 2000). However, people with these coexisting impairments have been neglected in research. Consequently, we lack an understanding of peoples experiences. How people with intellectual disabilities feel about their appearance and social experiences is unknown, making it difcult to identify what additional support may be appropriate. Weiner (2004) suggested that for people with intellectual disabilities, behavioural problems are more likely to occur if more than one risk factor is present. Does the combination of a cleft and an intellectual disability result in a case of double jeopardy, or are people affected coping well? Additionally, Harter (1999) described the well-documented association between satisfaction with appearance and self-worth, and as self perceptions are amenable to change, the importance of gaining perspectives of those who have historically been excluded from data collection in appearance research cannot be underestimated. Method: Qualitative study capturing young peoples experiences. Results and Conclusions: The work is still in progress, details of emerging results will be presented.
An evaluation of the implementation of the Portage Model of Early Education in a rural resource poor community, Northern Malawi A. Kelly (aine.kelly@sjog.ie)*,T. Ghalaeiny & C. Devitt *Saint John of God Hospitaller Services, Ireland Aim: This study evaluates implementation of a Portage Model of Early Education across ve core evaluative components: effectiveness, impact,relevance, efciency and sustainability (OMAR, 2002). Methods: An evaluation matrix was designed and structured questionnaires were completed via interviews with ve Portage staff, four trained nonprofessional community home visitors (CHV) and a convenience sample of ten families, who completed the CSQ8, Personal Wellbeing Index and the GHQ12. Results: The ndings showed that the pilot programme had been implemented successfully with some shortcomings related to the ve evaluative components. Overall parents were satised with the home visits, felt competent in educating their child at home, noted some developmental progress but expressed the need for more support and family and neighbour involvement. CHVs were satised with the training received, felt able to provide individualised support, but also reported challenges related to their role. Conclusions: The CDC and staff have been internationally accredited. Cultural and social factors do have an impact on the childs early education and community integration. Formalising partnerships with local community services and government health and education departments will help assimilate and sustain the programme. Future evaluations should consider the cross-cultural research limitations highlighted.

Symposium: Literacy instruction What is literacy? The power of a dention L. Keefe (lkeefe@unm.edu)* & S. Copeland *University of New Mexico Aim: There is no general agreement about how to dene literacy, yet this denition signicantly affects literacy opportunities for individuals with severe disabilities in schools and the community. We will present results from two studies examining how parents and professionals dene literacy for individuals with severe disabilities. Methods: In Study 1 we interviewed six parents regarding their perceptions of the literacy development of their children with severe disabilities including how they dened literacy. In study 2 we surveyed 40 individuals (parents and professionals) attending the national TASH conference regarding their beliefs about literacy and the importance of literacy instruction across the lifespan for persons with severe disabilities. Results: Thematic analysis revealed participants in both studies viewed literacy in different ways. Some viewed it in a traditional (i.e., skills based) manner while others viewed literacy in an expanded manner (e.g., including symbols and pictures). Denitions also clustered around perceptions of literacy as an active or passive process. Conclusions: The way in which we dene literacy affects what we teach, to whom we provide instruction, and opportunities to participate in the literate community. The impacts of a literacy denition go beyond instructional practices to the areas of research and policy. Instructional methods for literacy for students with intellectual disabilities: A systematic review L. Dyson (ldyson@uvic.ca)* & S. Manseld *Simon Fraser University,Vancouver, Canada Aim: While students with intellectual disabilities (ID) are traditionally excluded from literacy instruction, recent public and legislative actions are urging teaching such students to read. However, the effective methods remain unclear. This study investigated: (a) methods used to instruct such children; (b) their effectiveness; and (c) the contexts for effective instruction. Method: The study applied a mixed methods approach (Harden & Thomas, 2005) which included quantitative and qualitative methods. Aided by the computer program, the EPPI Reviewer (Gough, 2006), the study synthesized studies from 1990 to 2011, regarding schoolage children with ID ranging from the moderate to the profound degree. Results and Conclusion: Various instructional methods were revealed from 33 studies reviewed, the majority with an ABA design and all reported as effective with the difference being the level of complexity of the reading for different degrees of disabilities. The sight word approach and the phonic approach were the most common. Effective strategies employed multi-levels that combined assistive devices, use of symbols, and traditional teaching methods. Effective learning occurred in the context with the high levels of opportunity for responding. The results are signicant by listing effective strategies for teaching literacy to students with ID and by advancing research. To r-ea-d or not to r-ea-d: Should children with Down syndrome be taught phonics? L. Cupples (linda.cupples@mq.edu.au)* *ARC Centre of Excellence in Cognition and its Disorders, Department of Linguistics, Macquarie University, Australia Aim: This research investigated the effectiveness for children with Down syndrome (DS) of phonics reading instruction targeting knowledge and phonological manipulation of individual letter sounds. Methods: Participants were seven children with DS aged 6 : 3 (yrs : mths) to 10 : 10. All were native English speakers with normal or corrected vision and digit spans of 2 to 3. The research comprised three phases. During initial assessment, various cognitive-linguistic and reading-related tasks were administered. An 8-week intervention phase followed: During weekly sessions, participants were taught to read 40 CVC monosyllables, using a phonic (letter-sound) approach. Two post-intervention assessments followed training, one immediate and one delayed. Primary dependent variables were (1) oral reading accuracy and (2) comprehension of taught and untaught (generalisation) words. Results: There was no signicant change in childrens oral reading during the initial assessment phase. A signicant improvement in oral reading accuracy was observed for both taught (p < .05) and untaught (p < .05) words from pre- to (immediate) post-intervention, and a signicant improvement in comprehension of taught words (p < .05). Improvements were maintained one year later. Conclusions: Phonic reading instruction targeting individual letter sounds can be highly effective for children with DS despite their weaknesses in phonological short-term memory. Symposium: Health education
Barriers and facilitators in health education for people with intellectual disabilities: A qualitative study H. Bergstrm (helena.bergstrom@ki.se)*, L. Schfer Elinder, M. Hagstrmer & U. Wihlman *Department of Public Health Sciences, Karolinska Institutet, Sweden Aim: People with intellectual disabilities (ID) are at high risk of several lifestyle related risk factors for ill-health. Within the framework of a health intervention in Stockholm, Sweden a health education course targeting people with ID was developed to improve health literacy. The health education course included 10 sessions led by a health educator. The course was carried out in 16 community residences. The aim of this study is to describe and analyze barriers and facilitators in health education for people with ID. Methods: Data was collected from unstructured observations during six health education sessions, a group discussion with ve health educators, self-evaluation documents from ve health educators, and individual interviews with four course participants with ID. Qualitative content analysis was used to categorize the data. Results: Preliminary main categories have been identied such as individual factors regarding both health educators (e.g., experience) and participants (e.g., level of disability), interaction/communication (e.g., patterns of communication) and structures (e.g., organizing of the course). Conclusions: The results will give insight into factors that are important when planning health education for people with ID in relation to social interaction, pedagogics and content.
Working together in sex and relationship education: Establishing and monitoring systems of support for parents and staff D. Stewart (d.stewart@oakeld.nottingham.sch.uk)* & S. Bustard *Oak Field School, Nottingham Aim: To evaluate the impact of the schools Sex Education Monitoring Group, established in 1985 to monitor pupil education, evaluate the training methodology and the resources created for parents, and evaluate training provided to staff locally and nationwide by the school. Method: Parents were asked to evaluate their condence, knowledge and awareness after the three-month course which has been run each year for the last 26 years. Staff evaluated the training and the monitoring group evaluated the effectiveness of the taught lessons. Results: The ndings showed that those parents who attended the training felt more condent in tackling sex and relationship education and were clearly empowered by the strength of a parent group. Staff felt that they had more skills and knowledge and felt that the monitoring of lessons gave them condence in what can still be a difcult area of education. Conclusions: The value of monitoring gives condence to parents that the subject is taken seriously. Both parents and staff feel supported and access to on-going training is essential. Students benet by the collaboration of school and parents.

Symposium: Multiple topics:Teacher education and leadership engagement Analyzing narratives of Israeli student-teachers following a practicum with children with severe disabilities: Implementing the inclusion program was an amazing experience G.Vogel (vogeldov@netvision.net.il)* & G. Avissar *Beit Berl College, Israel Aim: To examine the effect of a special school placement on attitudes of student teachers toward inclusion of youngsters with severe disabilities. Attitudes toward the inclusion of youngsters with special needs are often formed during teacher education programs. In Israel, the practicum for special education teachers takes place in regular or inclusive schools as well as in special education schools and the special school placement is currently the only one available for providing teaching experience with youngsters with severe disabilities. This paper presents one such placement that involves the implementation of a part-time individualized inclusion program for children with severe disabilities in regular school settings. Method: Content analysis of 34 narratives of student-teachers and program graduates obtained through interviews and written questionnaires. Results: Participants shared insights and voiced concerns with regard to inclusion as well as describing how the experience inuenced their attitudes. Conclusions: We conclude with several recommendations for initial teacher training programs including a more in-depth and critical discussion of approaches to inclusion of children with severe disabilities. Symposium: Outcomes of inclusion
Impact of the inclusion of children with intellectual disabilities in general education classrooms on the progress of their peers R. Sermier Dessemontet (rachel.sermier@ife.uzh.ch)* *University of Zurich, Switzerland Aim: This study aimed at answering the following question: Do low, moderate, or high achieving pupils in general education classrooms where a child with an intellectual disability (ID) is fully included with support make as much progress in their academic achievement as similar pupils of classrooms without inclusion? Method: A quasi-experimental study with a group of 102 pupils in classrooms where a child with ID was included, and a control group of 102 similar pupils in classrooms where no child with special education needs was included, has been conducted. This research sample was formed on the basis of an initial sample of 780 children with a pair-matching procedure. Matching criteria were: gender, socioeconomical status, mother tongue, age, IQ and academic achievement at the pre-test. The progress accomplished by the two groups in their academic achievement has been compared over one school year with an ANOVA for repeated measures. Results: No difference was found between the progress of the pupils of the two groups in their academic achievement, independently of them being low, average or high achievers. Conclusions: Fully including children with ID in primary general education classrooms with suppport has no negative impact on the progress of their peers. Impact of inclusion on the academic achievement and adaptive skills of pupils with intellectual disabilities
Leadership engagement: A strategy for including students with disabilities I. Jackson (ijackson@anglicare.org.au)* *Anglicare, Sydney, Australia Aim: There is an extensive literature on the degree to which leadership behaviours impact on student learning outcomes inschool communities. The study reported in this paper sets out to extend current understandings of the dynamics of principal inuence by exploring the behaviours of school principals which were seen as contributing to successful provision for students with disabilities. Method: Four case studies were conducted in secondary schools in western Sydney, Australia. Results: The analysis of the different behaviours of the four principals gave rise to the concept of leadership engagement as a way of understanding how principals employ inuence in pursuit of desired outcomes. Conclusions: The presentation will discuss ve different approaches to engagement: with vision, with pedagogy, with people, with organisation, and through disengaged delegation all of which will be identied as contributing to successful provision for students with disabilities.
R. Sermier Dessemontet (rachel.sermier@ife.zh.ch)* *University of Zurich, Switzerland Aim: This study aims at answering the following research question: Do children with intellectual disabilities (ID) who are fully included in general education classrooms with support make as much progress in their academic achievement and adaptive skills as similar children educated in special schools? Method: A quasi-experimental study with an experimental group of 34 children with mild or moderate ID fully included in general education classrooms with support, and a control group of 34 similar children in special schools has been conducted. The academic achievement of the participants has been assessed with an academic achievement test. The adaptive behaviour of the participants was measured with the ABAS-II teacher and parent form. The progress accomplished by these two groups in their academic achievement and adaptive skills have been compared over two school years with ANOVAs for repeated measures. Results: Included children made slightly more progress in literacy than children attending special schools. No differences were found between the progress of the two groups in mathematics and conceptual, social and practical adaptive skills. Conclusions: Inclusive education seems to be an appropriate educational option for primary pupils with mild or moderate ID. Reasons mainstream education could not support students with special educational needs A. Kelly (aine.kelly@sjog.ie)*, D. OKeeffe & C. Devitt *Saint John of God Hospitaller Service, Ireland Aim: The purpose of the study is to explore the contributing factors that have led to an increasing number of students aged 12+ enrolling from mainstream to special education in Ireland. The study elicits views of students, parents and special school teachers to provide a deeper understanding of the reasons students are enrolling in special schools. Method: Semi-structured interviews and focus groups were conducted with (N = 11/62; 18% of eligible) special schools for pupils with a mild and moderate general disability; sample included students aged 12+(n = 10); parents (n = 12) and special education teachers (n = 16). Data was analysed using thematic and process analysis. Results: Students described academic and social difculties as reasons for enrolling in special education. Parents reported a lack of awareness of the difculties their child was experiencing until late in their childs education and gaps in resources to support their child in mainstream. Teacher data emphasised the impact of difculties on students learning and academic progression. Conclusion: Mainstream education could not support students for academic, social, emotional and behavioural related reasons. Parent and teacher views corroborate student experience. A partnership approach to involving students in mainstream education needs to be facilitated, which empowers students and parents.

Symposium: Early childhood education Transition experiences: Early childhood to public school programs for Canadian families with children with DD/ID J.Versnel (jversnel@dal.ca)*, P. Minnes, M.Villeneuve, C. Chatenoud & C. Dionne *Dalhousie University, Halifax, NS,Canada Aim: Transition of children with DD/ID into school requires that families prepare for this process (Janus et al., 2008). HELPS Inc is a Canadian research team focusing on health, education, and parent factors promoting social inclusion of young children with developmental delays and disabilities. We used mixed methods to document experiences of families with young children with developmental disabilities during this transition. Method: We surveyed 175 Canadian parents with children with DD/ID aged 36 years focusing on child, parent and professional factors thought to inuence the transition into school. We also conducted eleven multipleperspective case studies with varied stakeholders. Results: Preliminary data analyses conrm that, during this transition, families experience stress and uncertainty, parental perceptions about inclusiveness of education settings shift, as does the degree of parent involvement in the decision-making for their childs program. Conclusion: Our data illustrate the challenges Canadian families with children with DD/ID face during this transition. Our results provide insight into potential markers for successful transition into the public school system for children with DD/ID. Curriculum access for young children with intellectual disabilities in Ireland J. Ware (j.ware@bangor.ac.uk)*, C. Robertson, C. Butler & M. ODonnell *College of Education and Lifelong Learning, Bangor University,Wales Aim: To explore factors facilitating and hindering access to the curriculum for young children with moderate, severe and profound ID in mainstream classrooms in Ireland. Methods: Thirty-nine case studies of young learners with Special Educational Needs (SEN) were conducted in Irish mainstream classrooms. Data about their experiences of the curriculum were collected using observations and interviews. Data was analysed using NVivo. Experiences of children with IDs and other types of SEN were compared. Results: Pupils with mild ID were enabled to access the curriculum at the same level as their peers about 85% of the time. Access was much harder to attain for those with moderate, severe and profound IDs. Parents and teachers were agreed that access to the social aspects of the curriculum was the main purpose of inclusion for these pupils. Teachers used a range of differentiation techniques to facilitate access, but saw the role of assistants as crucial. Lack of access to appropriate training at both pre- and inservice levels was seen by teachers as a major barrier to access, as was lack of time within the school day for collaboration. Conclusions: The role of assistants, access to training and time for collaboration need to be addressed. Parents perceptions of social inclusion of children with developmental disabilities (DD) in Quebec province C. Dionne (carmen.dionne@uqtr.ca)*, C. Chatenoud, P. Minnes & A. Perry *Universit du Qubec TroisRivires, Canada Aim: This study describes participation in social and recreational activities of young children with DD. Parents satisfaction with opportunities for their child to participate with peers and experiences in promoting inclusion are also discussed. Method: HELPS Inc is a Canadian research team focusing on health, education, and parent factors promoting the social inclusion of young children with DD. As part of a larger study, 41 parents of children aged 47 years from Quebec completed a survey about health services, educational supports, social inclusion and parent collaboration with service providers. Results: Approximately half (56%) of the children spent unstructured time with peers. One third were not involved in such activities because they were either not allowed or not invited. Less than 20 % of children played on sports teams, and less than one third took lessons. The majority of children (92.5 %) went on outings in the community but only with parents. Differences in participation by type of disability and adaptive behaviour will be presented. Parents reported successes and challenges in promoting social inclusion will be discussed. Conclusions: These results highlight the need to consider inclusion of young children with DD in community as well as educational contexts (preschool and school).
Symposium: Inclusive education in Canada:The need for a national voice I Inclusive indicators: A tool for schools J. Specht (jspecht@uwo.ca)*, G.Young & M. Dolmage *University of Western Ontario, London, ON, Canada Aim: This presentation focuses on an action research project investigating how two secondary schools without life skills or segregated special education classes teach students with intellectual disabilities as members of regular classes. Methods: The Essential Best Practices in Inclusive Schools resource guide (Jorgensen, McSheehan & Sonnenmier, 2002) was adapted into a rating scale. This scale provides a framework for conceptualizing inclusive, effective education for students of all abilities at the high school level. Each school engaged in self-evaluation and took responsibility for its own change process. Focus groups with the staff helped us understand their change process. Results: The rating scale and focus groups provided a means to organize collaborative learning and planning as well as a way to measuring progress. Educators shared their desire to: learn ways to apply differentiated instruction in their daily lesson planning; discuss proactive planning for individual students; and promote career development by nding ways to reect on their inclusive practices. The benets of this scale as a professional development tool will be highlighted using the action research project as a backdrop. Conclusion: We will conclude by discussing the resources and supports that educators indicate would be benecial towards improving their inclusive practices. Exploring inclusive education policy in Canadian provinces and territories: Perspectives of teacher associations/federations/unions W. Lyons (wanda.lyons@uregina.ca)* & S.Thompson *University of Regina, Regina, SK, Canada Aim: This investigation is part of the Canadian Disability Policy Alliance: a ve-year collaborative research initiative focusing on policy and disability. The current study explored the extent to which leaders of provincial/ territorial teacher associations/federations, and/or teacher unions were aware of inclusive education legislation and policy in their respective jurisdictions. Further, this study investigated processes for information exchange within the membership, and identied salient issues regarding inclusive education policy. Method: Semi-structured interviews were conducted with General Secretaries and/or Presidents/Vice Presidents of teacher associations/ federations in Canadian provincial and territorial jurisdictions. Results and Conclusions: Interviewees described inclusive education legislation and government policy, and some further described policy developed by their organizations. Preliminary analysis of ndings suggests support for inclusive education and revealed common issues of implementation. Unique policy issues in some provinces and territories will also be highlighted. Strategies for developing inclusive approaches in preservice teachers C. DiGiorgio (c_digiorgio@hotmail.com)* *University of Prince Edward Island, Canada Aim: The purpose of this study was to determine to what extent the preservice program at a university faculty of education affected the candidates understanding and practice of inclusion. Methods: Data was collected from student journals. Journal entries were directed by questions that differed from week to week but centred around thoughts on inclusion in terms of its denition, personal knowledge and past and current experience in schools. Results: The ndings from this research conrm the value of personal experience with others with disabilities and its effect on teachers attitudes and practices. There was a conict between the ideas students learned in the courses and the messages and practices they saw in the schools. Teaching techniques during the B.Ed. courses that were found to have a positive effect on students development of inclusive practices included: the use of personal narratives from the professor, students and guest speakers; videos and written material about difference; eld trips; and the mixing of grade level cohorts to discuss issues across K-12. Conclusion: This study shows that the inclusive teaching strategies that are used in B.Ed. programs are potentially very inuential in modelling good practice for teachers.

Symposium: Inclusive education in Canada:The need for a national voice II Promoting inclusive teacher education through Disability Studies: Three inter-related studies S.Thompson (Scott.Thompson@uregina.ca)* & L. Aylward *University of Regina, Regina, SK, Canada Aim: Disability Studies in Education (DSE) theorists understand disability as a social construction rather than as a categorical essence (Thompson, 2011). We investigate these perspectives within three different projects with teachers enrolled in undergraduate and graduate courses in order to mitigate some of the material and social exclusion experienced by those labelled with a developmental disability. Method: Our methodology is a self-reective case study. Student participants were individually interviewed within each project. Online discussion forum responses were maintained for the rst two projects as well as student assignments. In the third project, course planning sessions with self-advocates were recorded, and eld notes of each class were recorded. Results: Several themes emerged. First, the voices of those labelled with disabilities tended to bring up additional issues had they not been there. Second, most student participants reported that alternative conceptions of disablement impacted their practice, Finally, we were struck by the kinds of resources produced by those labelled with disabilities and learning opportunities afforded them in these grass-roots organizations. Conclusion: Our work is an attempt within inclusive teacher preparation to help student and experienced teachers to redene disablement in ways that foster more effective inclusive practice. Does inclusion make a difference? Young adults with intellectual disabilities transitioning from school into community T. Gallagher (Tiffany.Gallagher@brocku.ca)* & S. Bennett *Brock University Faculty of Education, St. Catharines, ON, Canada Aim: Using an approach that centered on the perspectives of young adults with disabilities (along with multiple shareholders), this presentation will discuss data collected in relation to how young adults with intellectual disabilities (ID) transition into the community. Method: Young adults with ID were interviewed. Parents, educators, peers, job coaches, and community employers completed surveys. Data is being coded and categorized for recurring themes. Descriptive statistics and quantitative analyses will be completed on the survey data. Results: The following information will be discussed: (a) the relationship between inclusive schooling and transition into the community, (b) broadening goals of transition to encompass elements of social connectivity and relationship including sustainable friendships and personal contentment, (c) situating perspectives of young adults with ID as the central component of this research, (d) creating a learning model that provides dimension to the discussion about inclusion and the transitioning of young adults with ID and (e) providing information that will elicit a more intimate and informed examination of the relationship between inclusive education and community transition. Conclusions: Our ndings will build on existing understandings of community, inclusion and emancipatory research and paint a comprehensive picture of emergent, successful community integration. Using work-based education (WBE) to ensure inclusion in school and beyond N. Hutchinson, J.Versnel (jversnel@dal.ca)*, C.Taylor, M. Ingersoll & J. de Lugt *Dalhousie University School of Occupational Therapy, Halifax, NS, Canada Aim: Work-based education (WBE) is a major part of the inclusion strategy of provinces across Canada. For example, Alberta, Ontario, and Nova Scotia have increased emphasis on WBE to keep at-risk youth, including adolescents with disabilities, from leaving school early. The purpose of this paper is to report the perspectives of at-risk youth and their WBE educators in these provinces on what makes WBE effective how WBE can be improved. Methods: We interviewed 12 youth about their experiences in WBE programs, their engagement with school, and their recommendations for improvements. We also conducted three focus groups of WBE educators about their views on what made the programs effective, how they were designed to engage youth, and how the programs could be enhanced. Results: Fundamental differences in the approaches to WBE among and within provinces were reported by educators and students. Few educators understood the importance of t between programs and the needs of individual youth; many guided youth to programs by location rather than t. Conclusion: These data highlight the need for preservice and inservice teacher education on inclusion needs of at-risk youth beyond the school years. Symposium: Literacy
The accessibility value of literature adapted for a readership with intellectual disability K. Bunning (k.bunning@uea.ac.uk)* & S. Buell *University of East Anglia, Norwich, UK Aim: Production of easy read literature to facilitate reader accessibility has increased in the last decade. There is little published evidence to support its effectiveness. The study aimed to investigate the accessibility value of literature adapted for people with intellectual disability. Methods: Easy read literature with matched, mainstream counterparts were recruited from intellectual disability organisations in the U.K. The sample comprised 40 pairs of documents. Firstly, the easy read documents were assessed for compliance with the Mencap guidelines for the production of easy read material. Secondly, comparisons between the mainstream and easy read documents were drawn at the lexical and sentence levels using a range of tools powered by open source projects. Results: Compliance with Mencap guidelines showed variations across the easy read literature. The easy read literature achieved signicantly lower scores at the sentence level; however, lexical measures were variable. Conclusions: Variation in easy read characteristics presents possible challenges to the intellectually disabled readership. Easy read literature appears to have achieved a level of simplication that may be conducive to reader accessibility. The research falls short of address of lexical cohesion and eld testing the effectiveness of easy read literature with the targeted readership.
Understanding young adults and family goals for post school literacy education K. Moni, A. Jobling (a.jobling@uq.edu.au)* & J. Lloyd *The School of Education, University of Queensland, Australia Aim: Family support is vital in maintaining lifelong learning for individuals with intellectual disabilities. However, learning opportunities and needs for young adults post school are poorly understood, particularly in the area of literacy, due to limited research about the needs of adults and their families. The aims of this study were to determine the literacy skills of young adults, and to identify the needs of families in supporting continuing literacy development. Methods: A questionnaire was mailed to parents/guardians of young adults with intellectual disabilities via parent and community organisations throughout Australia. Completed questionnaires were mailed directly to the research team and analysed using SPSS. Results: Families of 288 young adults (144 males) responded. Over half the young adults were employed, mostly in part-time work. Eighteen percent of respondents reported their young adults had a range of educational opportunities, although 47% did not attend any education programs. Parents rated reading and support in developing reading as the highest importance, followed by writing and computer use. Conclusions: The ongoing development of literacy skills was well supported by parents however, there was limited support available in their local communities. Parents needed support to assist their child to learn to read, write and use computers.

Symposium: Student educational pathways Experiences of illegal school exclusions in Wales: A qualitative study J. Grey (pspeda@bangor.ac.uk)* & V. Butler *Bangor University,Wales Aim: Illegal school exclusions occur when schools request children to stay away. The exclusion is not recorded so does not appear on the childs school recorder. This results in a lack of education provision for the child. This study aimed to explore the practices of illegal school exclusion and capture the experiences and consequences to children and their families. Method: Qualitative data was gathered from a total of 50 families and 15 education professionals. Triangulation methods were used: semi-structured interviews, focus groups and service-held case les. Data was thematically analysed by two researchers. Results: Families often experienced a series of illegal exclusions. Sixty-three percent of the children experienced developmental or health condition or intellectual disability. Poor understanding of behaviour management escalated vulnerable pupils negative behaviours. Schools used illegal exclusions for behaviour management or to avoid stigmatising vulnerable children with an ofcial exclusion. Illegal exclusions have a major impact on self-esteem and the dynamics of family life, including nancial poverty. Conclusion: Recommendations from this study call for improvements in behaviour support in schools. The Welsh Government has used conclusions to inform education policy. Educational pathways of young disabled people in Austria and Czech Republic T. Buchner (tobias.buchner@univie.ac.at)* & J. Siska *University of Vienna, Austria Aim: Quali-TYDES is an ESF-funded project aiming to investigate and explain how developments on different policies levels are impacting on the lives of young disabled people in Austria, Czech Republic, Ireland and Spain. This presentation aims to generate policy relevant knowledge that is grounded in the experiences of young disabled persons (including persons with intellectual disabilities). Methods: Biographical research is combined with critical policy analysis. Results and Conclusions: We will present preliminary results from our rst phase of eld work, comparing the educational pathways of young disabled people in Austria and Czech Republic. In both countries, education in special schools pushed most participants towards segregated trajectories leading them from special schools almost directly to sheltered workshops. Support was focused on therapeutic and medical issues. Academic learning outcomes were described as poor. Students in integrated schooling were bullied often, causing serious mental health problems over the life course for some participants. Besides the negative social aspects, education in mainstream schools was considered as sometimes painful but necessary experience preparing for the real life after school by participants. Coming from mainstream schools, most participants were able to manage school to work transition successfully and attain paid jobs on the rst labor market. A study of pupils experiences of their everyday life in the Swedish upper secondary special school srskolan T. Mineur (therese.mineur@hh.se)* & M.Tideman *Halmstad University, Sweden Aim: The Swedish educational system consists of parallel types of schools. Besides regular compulsory school and upper secondary school another type of school exists in Sweden, referred to as srskolan. This is a special school intended for pupils with intellectual disabilities. The primary aim in this thesis is to increase the knowledge about pupils experiences of their everyday life in srskolan, with regard to the specic school organizations. The experiences of belonging to srskolan and perceptions about their identity and knowledge development have been studied. Furthermore the pupils preparation and perceived possibilities for adulthood have been highlighted. Method: The schools were selected based on a questionnaire survey which aimed to study the variation that exists regarding the organization of upper secondary special schools. By participant observations and interviews with 14 young women and 12 young men at ve different schools, the inside perspective have been focused/studied through an interpretive approach. Results: The ongoing analysis of the results indicates that the pupils perceive advantages as well as disadvantages belonging to srskolan. A majority phrase injustice in the school system and differences can be seen in their experiences derived to a gender perspective. Conclusions: Conclusions will be announced during the presentation. Symposium: Bilingualism
Double inclusion: Supporting the communication of bilingual learners with Down syndrome in early years education F. Kyfn (f.k.kyfn@bangor.ac.uk)*, J. Ware & E.Thomas *Bangor University,Wales Aim: There is little information about the most appropriate communication support for young children who have an intellectual disability and are sequential bilinguals in multilingual schools. The study aims to explore teaching strategies and develop a training resource which can inform early years classroom practice. Method: Special educational needs practitioners were interviewed in Greater Manchester, England from specialist early years provision and mainstream teachers with experience working with sequential bilingual children. These positions determined their views about and strategies for supporting the communication needs of children who have Down syndrome and English as an additional language (EAL). These results were compared and contrasted to provide an overview of ideas and practice from these two areas of expertise. Results: Themes emerging from the analysis include: addressing childrens cultural needs in order to support their communication, differing entitlements to specic EAL support for children with and without SEN and gaps between schools inclusive policies and teachers inclusive practice. Conclusions: Further research is needed and the study will next examine the success of classroom intervention based on the research ndings. An executive functioning task exploring the effects of bilingualism on children with MLD C. Lye (bethanlye@gmail.com)*, J.Ware, E.Thomas & M.Rhys *School of Education, Bangor University,Wales Aim: The pattern, rate, and consequences of bilingual cognitive development have received a great deal of interest recently and benets have been found for bilinguals in various cognitive domains. Much of this research has been conducted with typically developing children and used experimental tasks which bear little relevance to the real world and some of which are not particularly motivating. The aim of this poster is to present the development of a new and motivating real-world executive functioning (EF) test, and to explore whether the EF benets associated with bilingualism extend to children with moderate learning difculties (MLD). Methods: Bilingual and monolingual children with and without MLD between 712 years old were tested on the Aeroplane Task. Results: Preliminary results suggest no signicant differences were found between bilinguals and monolinguals with MLD; however analyses on home language background revealed a more complex picture. Conclusions: Results suggest that children with MLD are not disadvantaged by being bilingual, but neither do the cognitive benets extend to them. Children with special education needs should stick to one language: Should they really? C. Lye (b.lye@bangor.ac.uk)*, J.Ware, E. M.Thomas & M. Rhys *Bangor University,Wales, UK Aim: Research suggest that parents are told bilingualism can disadvantage or confuse children with special education needs (SEN), and professionals have also been reported to encourage parents of children with SEN to stick to one language (Baker, 2007). Studies have looked at the effects of bilingualism on the linguistic development of children with Specic Language Impairment (SLI), however few studies have looked at bilingualism and learning difculties (LDs). Furthermore, studies on typically-developing bilingual children suggests that there are cognitive advantages to being bilingual and that linguistic decits disappear once they reach secondary school (e.g. Bialystok, 2001). Method: This study compares monolinguals and bilinguals with and without moderate LDs between 712 years on lingustic and cognitive development to explore the whether the cognitive and linguistic effects found for TD children extend to children with MLDs. Results: Results suggest that there are no differences between monolingual and bilingual children with MLDs in terms of their cognitive and linguistic skills. However, analyses comparing TD children and children with MLDs revealed a more complex picture. Conclusion: Bilingual schooling is unlikely to adversely affect children with MLDs cognitive and linguistic skills. The implications of these ndings for bilingual education and SEN will be discussed.

Symposium: Arts education Developing progression routes in dance for young people with learning and physical disabilities, through education to employment P. Russ & D. Stewart (d.stewart@oakeld.nottingham.sch.uk)* *Oak Field School and Sports College, Nottingham, UK Aim: This Department of Education research project set out to dene the opportunities for disabled young dancers to access professional training and to be ready for a possible career in dance. Dance4s Centre for Advanced Training (CAT) sought to breakdown the notions of the dancers body, providing the dance sector with tools in which to embed the training of disabled young dancers in the delivery of the main stream programme. Method: Working with a range of disabled young dancers, researchers from Trinity Laban worked with Dance4 CAT and Oak Field School to provide a scheme that to cater for the training of all students. Results: The project has resulted in a professional development programme aimed at broadening the understanding within dance professionals about the ability, capability and employment opportunities for disabled young people who demonstrate a talent for dance. It has identied progression routes through education to employment and secured funding which can embed learning and practice in this internationally unique scheme. Conclusion: Research identied the institutional barriers which lead to low engagement and the need for further research on the notion of gifted and talented and pupils with ID. The importance of parental support was also a major factor in access. Applying PhotoVoice: Expressing our potential through participatory photography S. Bustard (sarah.bustard@ntu.ac.uk)* & A. Del Buono *Nottingham Trent University, Oak Field School and Sports College, Nottingham, UK Aim: To apply PhotoVoice methodology to the lives of young people with ID; develop participants photographic and communication skills to express the reality of their lives and their hopes for the future; and inform the progression planning process as young people reach the end of their schooling and prepare for college or work. Method: The PhotoVoice methodology aims to bring lasting change to participants, empowering them to inform others and to be actively involved in decisions that affect their lives. This photographic project gave young people with ID an opportunity to express themselves. A group of young people was recruited through Oak Field School and engaged in a series of 10 group work sessions using analogue and digital cameras. Results: This project enhanced the individuals understanding of composition, cropping and lighting. During these sessions the young people developed their ideas, visual literacy skills and condence, culminating in a powerful visual and audio statement of their personal experience. Conclusions: Photography and the PhotoVoice methodology is a powerful tool that can be used for personal expression, communication, as therapy, and to empower young people with ID to engage with and express their hopes for transition planning. Mexican School of Down Art S. Escamilla (monireyes_78@hotmail.com)* *The John Langdon Down Foundation, Mexico City Aim: The Mexican School of Down Art provides many young persons with Down syndrome the opportunity to: (a) use art to develop communication in young adults with Down syndrome, (b) encourage the development of abstract thought through artistic work and (c) promote the full participation of people with Down syndrome into society. Methods: The school provides instruction in various artistic techniques as well as history of art, expression and picture appreciation. Results: Abstract thought, creativity and imagination are stimulated through the arts. These artistic pursuits and accomplishments provide the student also with self-condence, self-esteem, satisfaction and enjoyment. Conclusions: Artists with Down syndrome contribute to the cultural life of society. Symposium:Transition planning
Does person-centred planning facilitate good transition planning for young people leaving school? A. Kaehne (kaehnea@cf.ac.uk)* & S. Beyer *Welsh Centre for Learning Disabilities, School of Medicine, Cardiff University, Wales Aim: Research indicates that there is insufciently robust evidence that person centred planning (PCP) delivers better services for people with intellectual disabilities (ID). Our study investigated the use of PCP in transition plan reviews for young people with ID leaving special school. We wanted to know how PCP standards translate into the transition planning context and how it impacts on evidenced deciencies of transition planning. Method: We developed a catalogue of criteria against which the transition plans were analysed in a local authority that had introduced a PCP regime. Two independent researchers coded the transition plans. Coding reliability was established. Results: Our ndings indicate that PCP in transition planning is a time and resource consuming exercise that improves the inclusion of stakeholders in the transition planning process for this population, increases the satisfaction rate amongst families with transition planning, and leads to clearer denition of transition goals within transition plans and facilitates subsequent monitoring. Conclusions: These preliminary ndings need to be tested with a large scale sample of participants. A measure of transition planning outcomes should be an essential component of any future testing to assess the effectiveness of PCP in improving post-school outcomes for young people with ID. Upper secondary school and then? J. Arvidsson (jessica.arvidsson@hh.se)*, M.Tideman & S. Widn *Halmstad University, School of Social and Health Science, Sweden Aim: The purpose of the study is to increase the knowledge about the transition from school to working life for pupils with intellectual disabilities. In addition the purpose is to identify factors which may play a role in strengthen their position on the labor market. Method: The rst study is quantitative and based on the cross classication of a newly created register combined with two Swedish national registers. The statistical identication highlights the situation of all students who left upper secondary school for pupils with intellectual disabilities, during the period 20012011. The rst study includes more than 17 000 people with intellectual disabilities. Results and Conclusions: At the time for the conference we will be able to present descriptive data for how many individuals who have passed upper secondary school between 20012011, how many are in the daily activity programs and how many have ordinary jobs outside daily activity. We will also be able to describe the situation based on factors such as differences between regions and municipalities, between the sexes and between different upper secondary school programs. Functioning of young adults with Down syndrome transitioning into post school day occupations K-R. Foley (kittyf@our.ecu.edu.au)*, S. Girdler. J. Bourke & H. Leonard *School of Exercise, Biomedical and Health Sciences, Edith Cowan University, Perth,Western Australia Aims: To investigate whether the relationship between young adult functioning in Down syndrome and post school day occupation is modied by health status. Methods: In 2009, parents of 164 young people with Down syndrome who had left school completed a questionnaire relating to their childrens activities, health, functioning and service needs. Results: Twenty (14.0%) of the young people had seven or more episodes of illness, 55 (30.2%) ve or more GP visits and 43 (21.9%) one or more hospitalisations in the previous year. After adjusting for age, gender and locality, those who were reported to have worse functioning (higher score) in self-care (OR 1.29, CI 1.151.45), community (OR 1.23, CI 1.121.34) and communication skills (OR 1.84, CI 1.412.40) were more likely to be in sheltered employment and/or alternatives to employment compared to those in open employment and/or attending TAFE. Estimates of health service use and mental health status (using the Developmental Behaviour Checklist) as measures of morbidity did not modify this relationship. Conclusion: Our analyses have shown that functioning has the strongest relationship with post school day occupation. Current health status and behaviour did not have a major inuence on post school day occupation once adjusted for young adult functioning.

Symposium: Inclusive post-secondary education Inclusive post-secondary education for diverse learners: Supporting transition M. L. Aylward (lynn.aylward@acadiau.ca)* & C. Bruce *School of Education , Acadia University,Wolfville, NS, Canada Aim: The aim of this paper is to present an analysis of Inclusive PostSecondary Education (IPSE) for students with intellectual disabilities through the lens of Disability Studies in Education (DSE). Methods: Using a newly created program at Acadia University in Nova Scotia, the authors method entailed an application of the tenets of DSE to the program components and goals to discuss the ways in which IPSE is relevant to the lives of students with intellectual disability labels. Results: Results indicate that the particular model of IPSE that informed the design of this program adheres signicantly to the tenets of DSE, both with regard to the process of research and development as well as to specic program components and implementation plans. Conclusions: DSE is an emerging academic discipline that seeks to contribute to scholarship and meaningful educational inclusion through theory, research, and practice that challenges typical constructions of disability and privileges knowledge derived from the lived experiences of people with disabilities. The authors conclude that IPSE holds great potential to increase that body of knowledge and to contribute in a meaningful and relevant way to the inclusion of people with intellectual disabilities in post-secondary education. A college program for persons with intellectual disabilities: Participant outcomes and campus community impact C. Everington (everingtonc@winthrop.edu)* & A.Martin-Delaney *Winthrop University, SC, US Aim: Research has shown that individuals with intellectual disabilities (ID) who engage in post-secondary education programs have increased employment rates and higher wages. The aim of this study was to examine the impact of the a college program for students with ID ages 1822 on (a) skill acquisition of the participants with ID and (b) attitudinal changes of University faculty and mentally typical peer mentors and classmates. Method: Project impact on faculty and typical peer/classmate perceptions was collected via pre-post surveys administered each semester. These measures examined knowledge of and comfort with working with individuals with ID as well as perceived project benets to the learning environment. Outcomes for the students with ID were assessed through pre-post administration of the Arc Self-Determination Scale (Wehmeyer & Kelcher, 1995) and student progress data. Results: Although most participating faculty and typical college peers had little or no previous experience with individuals with intellectual disabilities, the project increased their knowledge of this disability and their perceptions of the competence of persons with ID. Preliminary participant data indicates strong outcomes across a variety of domains. Conclusions: Postsecondary programs for students with ID benet both the college community as well the individuals with disabilities. Post-secondary students with intellectual disabilities: Reections on campus life, advocacy, and ability/disability S.Thompson (Scott.Thompson@uregina.ca)* & L. Hunter Faculty of Education, University of Regina Aim: The current qualitative exploratory case study is bounded by the Inclusive Post Secondary Education (IPSE) program for students with intellectual disabilities entitled Campus for ALL at the University of Regina. As a collaborative process, we investigated two over-arching research areas. The rst was to explore the perspective of the students themselves on university life. The second was to contextualize these perspectives within larger questions about advocacy, self-advocacy, and the disability movement(s). Method: We have conducted one-on-one semi-structured interviews with students. Trusted advocates and/or other mentors also participated in some interviews. Interview transcripts as well as initial ndings and were shared with participants in a focus group. Data were coded, categorized, and then presented thematically. Data analysis included triangulation, code-checking and purposeful searching of disconrming evidence. Results: Several themes emerged including: tensions between student expectation of the post-secondary experience as social vs. vocational, benets to students without disabilities, and advocacy issues. Conclusions: This study adds to the understanding of the role of IPSE programs for person with intellectual disabilities. Symposium: Employee training
Economic and social outcomes of completing traineeships and apprenticeships for Australians with disabilities E. Cocks (e.cocks@curtin.edu.au)*, G. Lewis & S.Thoresen *Centre for Research into Disability and Society, Curtin Health Innovation Research Institute, Curtin University, Ausstralia Aim: Participation rates of Australians with disabilities in traineeships and apprenticeships are low, although benets of combining vocational education and work are widely acknowledged. Three studies of people who successfully completed traineeships or apprenticeships are described. Methods: The rst two studies, published in 2011, outlined the work of EDGE, a supported employment agency for people with disability in WA. Study One described three projects identifying successful strategies for supporting people in apprenticeships/traineeships.Study Two described post-completion outcomes over ten years for 253 EDGE apprentices and trainees, comparing outcomes with a matched-pairs group. Study Three, a national, three-year longitudinal project, commenced in 2011 by surveying three hundred individuals post-completion to identify economic and social outcomes including income, career development, employment sustainability, quality of life, and social participation. Thirty individuals will be sampled for in-depth case studies. The project is funded by the Australian Centre for Vocational Education Research. Results: The presentation will outline successful strategies and identify better economic outcomes for completers from Studies One and Two. Preliminary results from the rst year of the longitudinal study will be discussed. Conclusions: This research supports engagement of people with disability in traineeships/ apprenticeships to capitalise on benets of combining vocational education and work.
Lifelong learning and employment in older Irish adults with an intellectual disability E. McGlinchey (mcgline@tcd.ie)*, E. Burke, P. McCallion, J. Swinburne, & M. McCarron *Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDSTILDA), Trinity College, Dublin Aim: To understand the employment status of adults with an intellectual disability and their uptake of lifelong learning and education courses in Ireland. Method: The rst wave of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) included a series of questions on employment, day programming and lifelong learning that yielded data for a representative sample of 753 participants with intellectual disability aged 40 and over randomly selected from Irelands National Intellectual Disability Database (NIDD). Results: Overall 6.6% were in regular paid employment, 89% of respondents were attending a day service and 15% were engaged, or had been engaged in a training course. Staff carers were also found to play critical roles in the ability of people with ID to access such services and supports. Uptake of educational courses was low; however 30% of respondents expressed interest in engaging in further education. Conclusion: Work, education and income are all reported to be inuential in well-being as individuals get older. Findings here suggest that people with ID are particularly disadvantaged in all of these areas.

Symposium: Creating postsecondary education opportunities Creating postsecondary education opportunities for individuals with intellectual disabilities in the U. S. D. Johnson (johns006@umn.edu)* *University of Minnesota, Minneapolis, US Aim: The Higher Education Opportunity Act of 2008 was enacted in the U.S. to increase postsecondary education opportunities for individuals with intellectual disabilities (ID) in 2-year and 4-year colleges and universities. This symposium presents: (a) experiences of four universities in the states California, Hawaii, Ohio and Minnesota in designing and implementing these programs, and (b) shares information on outcomes and impacts of these efforts for individuals with ID and universities. Method: Qualitative and quantitative data from evaluations of these university experiences are summarized to provide an understanding of implementation challenges and successes. Results: Time since implementation has resulted in increased levels of participation, use of person-centered planning approaches, application of universal design practices, increased social inclusion, and greater access to postsecondary courses. Implementation challenges and successes in university policies and practices, and the experiences of individuals with ID have been documented. Conclusions: Increasing numbers of individuals with ID have gained access to colleges and universities throughout the U.S. Successes have been documented, but challenges remain including ensuring that appropriate levels of support services are available, academic courses are accessed with needed accommodations, addressing issues of nancial aid, and creating opportunities for social inclusion within postsecondary education settings.
Symposium: Employment outcomes and support Working in the community: Employment information on adults with ID/DD from across the United States J. Engler, C. Moseley, S.Taub (staub@hsri.org)*, J. Bershadsky & V. Bradley *Human Services Research Institute, Cambridge, MA, US Aim: Presenters will paint a comprehensive picture of employment outcomes across the U.S. and variables associated with such outcomes. Findings include hours worked and wages earned by individuals with ID/ DD, differences between community and facility-based employment, and the relationship of employment to other outcomes such as choice and relationships. Method: Authors analysed data from the recent National Core Indicators (NCI) Adult Consumer Survey, representing over 11,000 adults with ID/DD across 16 U.S. states, Orange County, California, and the District of Columbia. Results: People who worked in the community had better outcomes in areas such as relationships, choice, community inclusion, respect, rights, and safety. Compared to those working in facilitybased employment, people in community-based employment earned higher hourly and overall wages. Conclusions: Presenters will discuss conclusions that can be drawn from the ndings and how the results can be used by providers, managers, and advocates concerned about increasing employment opportunities for individuals with ID/DD. The policy implications for systems that provide employment support services to adults with ID/DD will be identied and discussed. Supported Employment: Not re-inventing the wheel, just moving it in a realistic direction R. Forrester-Jones (R.V.E.Forrester-Jones@Kent.ac.uk)*, N. Gore, R. Forrester-Jones & R.Young *Tizard Centre, University of Kent, Canterbury, UK
Symposium: Outcomes in employment in the United States and Australia I & II Outcomes in wmployment in the United States and Australia: Trends and implications W. Kiernan (william.kiernan@umb.edu)*, D. Mank, H. Boeltzig & E. Cox *Institute for Community Inclusion, University of Massachusetts, Boston Aim: This two hour symposium will examine cross country ndings in the employment of person with disabilities. The members will review current trends in the approaches to service delivery; the outcomes realized; and the implication of these outcomes for the perspectives of policies, practices and procedures in the coming years. The panel will consider recent studies on employment outcomes for persons with intellectual disabilities in the United States and Australia, some of the implications to these nding, and changes in the delivery system based upon ndings.
Aim: To evaluate The Sustainable Hub of Innovative Employment demonstration project for people with Complex Needs (SHIEC) which aims to support people with ID and complex needs into paid employment. Here we report on participants perceptions about the process involved in supporting people with complex needs into work. Method: Sixteen qualitative interviews were carried out with service providers and paid carers to establish their experience of involvement in the project and outcomes they perceived for themselves and the people they supported. Results: Seven themes signicant to participants experiences were derived from the data set, including both structural and emotional barriers to nding appropriate employment for individuals as well as the need to resolve such barriers. All participants reported that the social and informational support they received from SHIEC, as well as positive outcomes of nding work for their clients made the task worthwhile. Recommendations for future practice include acknowledging the difculties of supporting people with complex needs into employment, the need for realism in the eld, and for the provision of encouragement and rewards to staff engaged in this type of task. Supported employment agency as mediator for people with intellectual disabilities health: Results from a qualitative study E.Vigna (vignae@cf.ac.uk)*, S. Beyer & M. Kerr *Welsh Centre for Learning Disabilities, School of Medicine, Cardiff University, Wales Aim: The paper describes the role of supported employment (SE) agencies as health mediators for people with intellectual disabilities (ID). The research aim is to listen to staff directly involved in supporting and training people with ID, and people with ID, about their perception of how employment can promote positive health outcomes. The research reveals how health can be supported for people with ID health through the SE process. Methods: Managers, job coaches and employees with ID selected from a purposive sample of agencies have been interviewed on the topic using a Grounded Theory approach. Results: This paper reports manager and job coach perspectives on how the SE process may be best structured to deliver health, as well as employment, outcomes. Differences in health awareness, assessment content and delivery of key SE stages were found between agencies engaged with or disengaged from health issues. A range of health outcomes were reported. Conclusion: The paper highlights the potential, and difculties, for SE agencies in engaging as health mediators for people with intellectual disabilities. Implications for employment policy, SE design and job coach are outlined.

Symposium: Attention prole and assistive technology Attention and activity proles in children with intellectual disability: Development of a teacher rating scale N. Freeman (nerelie.freeman@monash.edu)*, K. M. Cornish & K. M. Gray *Centre for Developmental Psychiatry & Psychology, Monash University, Melbourne, Australia Aim: Attention-decit hyperactivity disorder (ADHD) appears to be at least as common, if not more so, in children with an intellectual disability. Commercially available scales measuring ADHD were developed for typically developing children and are not valid for those who have an intellectual disability. This project aims to evaluate a new teacher rating scale (Teacher Scale of Attention in Intellectual Disability [T-SAID]) developed by the authors measuring attention, hyperactivity, impulsivity and working memory. Method: 200 children aged 512 years with a diagnosis of autism, Down syndrome, Fragile X syndrome or idiopathic intellectual disability living in Victoria, Australia were recruited. Severity of intellectual disability was measured by cognitive and/or adaptive living skills assessments. Classroom teachers completed the T-SAID, Conners 3 and the Developmental Behaviour Checklist. Results: The reliability and validity of the T-SAID will be reported. The relationship between attention difculties, different syndromes and severity of intellectual disability will also be examined. Conclusion: The T-SAID has demonstrated reliability and validity, and meets an existing need in identifying children with attention difculties. Cross-syndrome proles demonstrate that children with these difculties may present in different ways. Understanding these differences will help teachers target their strategies to maximise children’s learning potential. AEGIS:Testing deskop, mobile and rich intenet applications with people with physical, severe and profound intellectual disabilities and those with complex needs D. Brown (david.brown@ntu.ac.uk)*, L. Evett, K.Van Isacker & D. Stewart *Nottingham Trent University, UK Aim: The GIS project seeks to determine whether 3rd generation access techniques will provide a more accessible, more exploitable and deeply embeddable approach in ICT. Methods: A range of AEGIS prototypes were tested using both qualitative and quantitative methods (data logging, questionnaires, focus groups, co-discovery protocols) with students at the Oak Field School, Nottingham, UK. Students were aged 319 with physical, severe and profound learning disabilities and complex needs. These prototypes included CCF Ooosymbols, Accessible Contact Manager, Alternate Text Entry (Dasher) and Tecla Switch (for Mobile). Results: The response of CCF Ooosymbols was slow at times, not all symbols were present, but there is good potential. There is need to ability to import symbols commonly used by any user group. Users liked Accessible Contact Manager, but there are bugs, and inconsistencies. Resutls for Tecla and Dasher were generally positive. Conclusions: Results from the second round testing phase are being used by the prototype developers in a process of iterative developers. Suggestions for improving the testing protocols and methods have also been made. All prototypes are Open Source and will be free for use by the community at project end. Low cost assistive technology for struggling students R. Brightwell (bbrightw@uga.edu)*, Z. Stoneman & H. Jinnah-Ghelani *University of Georgia, Institute on Human Development and Disability, US Aim: This fast paced session will look at a wide variety of tools that enable students to function more independently in the classroom. Methods: We will look at Apple hand held products (iPad, iPod Touch), talking pens, QR-Codes to create interactive lessons, and anything else that is new and cool. Results & Conclusions: Participants will learn about current and emerging technology that can aide struggling students in the classroom. Innovative ideas will be shared that open a world of possibilities for use. Detailed handouts will be provided to particpants. Symposium: Accessing employment
Engagement of indigenous jobseekers with a disability with government disability employment services B.Yates (brian@jobcentreaustralia.com.au)* & J. Nash *Job Centre Australia Limited Aim: This study was conducted in regional areas in NSW Australia to identify reasons for low level of engagement of indigenous people with disability and government funded disability service providers. Method: Data was collected through community meeting and individual face to face interviews using a set of broad based questions. Results: Areas identied as potential barriers to engagement included: (a) differences in perception of disability in the indigenous community; (b) the level of understanding of the needs of indigenous people by bureacracy, employers and disability agencies; (c) perception of racial stereotyping and prejudice and their impacts on condence and motivation; (d) the perception of shame in some indigenous cultures in relation to disability and subsequent disclosure; (e) the level of communication of available services; and (e) inability of some indigenous people to deal with the maze of government systems and programs. Conclusions: Learning opportunities were gained during this six-month study in relation to conicts between indigenous peoples expectations and ability to engage and the system in which they are expected to work within. This study has framed some specic strategies within Job Centre Australia to better engage with indigenous people with a disability. Social businesses owned by persons with intellectual disabilities: A case study F. Owen (fowen@brocku.ca)*, A. Readhead, C. Bishop, J. Hope & J. Campbell *Brock University, St. Catharines, ON, Canada Aim: This research project is a descriptive case study of an innovative network of ve social purpose businesses owned and operated by persons who have intellectual disabilities and supported by job coaches provided by Common Ground Co-Operative in Toronto, Canada. Since its formation in 2000, Common Ground has launched four new social purpose enterprises while continuing to support its original venture, Lemon & Allspice Cookery. Methods: Semi-structured interviews were conducted with participants from key constituency groups: the business partners who have intellectual disabilities and Common Ground staff and Board members. Results: The case study is designed to describe the perception of Common Ground and the businesses it supports held by members of its key constituencies. The results reect key themes within and across constituencies including issues related to business ownership and operational decision-making. Conclusion: The Common Ground partnership model is unique in the traditional spectrum of employment and day program options that is typically available for persons with intellectual disabilities. This case study describes social purpose business partnerships that provide the dignity of meaningful and sustainable employment. Challenges faced by persons with moderate to severe intellectual disability in open employment: A retrospective, qualitative, exploratory study J. Selvadurai (joshua.iedc@minds.org.sg)* *Idea Employment Development Centre, Singapore Aim: This study explored the challenges faced by persons with intellectual disabilities (PWID) in open employment (OE) and identies prevalent challenges. Method: This study reviews reports based on interviews with 31 adults with moderate to severe intellectual disability from IDEA EDCMINDS, Singapore, their co-workers and parents. They were placed in open employment, after due consideration of their skills, adaptive behaviour and parental consent; and are on professional support since placement. Results: Despite proper job match, it was found that 48% of PWIDs were having interpersonal skills problems with their co-workers. Also, 71% of clients had a change in job scope after they were trained and placed. PWIDs had problems in work skills and physical skills within 2 years of job commencement. Qualitative analysis of interpersonal skills reveals that few PWIDs choose whom to listen to for instructions; moreover most of the co-workers were perceived as authoritative personnel. When there is a change of job scope, employers tend to consider more on work experience but little attention were given to the interest and ability to learn new skills. Conclusion: The prevalence of challenges faced by PWIDs in OE and some recommended strategies to overcome are discussed.

Symposium: Inclusive education programmes in European universities: What works? Students with intellectual disabilities in higher education institutes: An Irish experience N.Lally (lallyn@tcd.ie)*, M. Leanne, B. King, A. OByrne, C. Jennings & S. Foran *National Institute for Intellectual Disabilities (NIID), School of Social Work and Social Policy, Trinity College Dublin Aim: The purpose of the study was to explore the experience of implementing an inclusive educational programme for people with intellectual disabilities in six higher education institutes in Ireland. Methods: Multiple sources of qualitative data were collected to gain an understanding of the experiences of students, course tutors, champions who pioneered the initiative in each setting and student family members. Data was gathered via focus groups, interviews and surveys. Results: All participants experienced personal growth and development. For students, there was a deepening of their abilities to claim their educational rights and advocate for higher education infrastructure change. For tutors, the gain was in their experience of innovative learning and assessment methodologies targeted on this group. What emerged for champions was a questioning of how best to include students with intellectual disabilities in higher education. For family members, seeing their son or daughter in a new light brought with it the challenge of letting go. Conclusions: The study has highlighted some key challenges and insights for higher education institutes in how best to increase the inclusion of students with intellectual disabilities. Challenges and bents in higer education for people with intellectual disabilities in Iceland G. Stefansdttir (gvs@hi.is)* *University of Iceland Aim: One of the programs offered by the University of Iceland since 2007 is a two year inclusive semi professional program for students with intellectual disabilities situated within the division of social pedagogy. The aim of the study is to (a) enable students to graduate with the knowledge, skills and values that will let them take their place in various jobs within the eld of social pedagogy; and (b) ensure the best practices in supporting people with intellectual disabilties toward full membership in the society. This paper will focus on the outcomes of the research that formed the base for the development of the curriculum as well as the guidlines for the study implementation. Methods: Data were collected through focus groups and inverviews with the students and university teachers carried out from 20072011. Results & Conclusions: Most students agreed that cooperation with other students at the university was one of the greatest values of the study. Students improved social skills and felt valued and respected at the university. University teachers felt they had grown as a teachers and deepened their understanding of different learning needs and inclusive education. Identied challenges included how to teach, evaluate and credit inclusive modules. The rst steps on starting courses in music for students with intellectual disabilities at the Academy of Music in Malm, Lund University. Ways, means and barriers M. Becker Gruvstedt (maria.becker-gruvstedt@mhm.lu.se)*, M. Niemi, & A. stns Academy of Music in Malm, Lund University, Sweden Aim: The education system in Sweden has not yet formed a sustainable way into higher education and lifelong learning for students with intellectual disabilities. Discussions on inclusive education nationally are ongoing but few concrete examples have yet been implemented. This presentation will present experiences from the rst attempt to organize and provide courses for students with intellectual disabilities within higher music education in Sweden. Methods: Two courses were given at the Academy of Music in Malm, Lund University in 2010 and 2011. The content of the rst course focused on the history of music, rhythm and ensemble playing. The second one focused on Opera as an art form with both process and product as means of learning. Results and Conclusions: The experiences show the students capability to develop and enhance musical expression. However, questions concerning (a) the quality of music education currently available to students with ID, (b) pedagogical approaches in the academy, (c) rules for admission to higher education and (d) different attitudes to widening participation within the academies has emerged and need to be processed. Symposium:Transition to employment
Changing systems from the ground up: How local transition-to-work interventions inuenced statewide systems change efforts in New York State J. Christensen (julie_christensen@urmc.rochester.edu)*, S. Hetherington & S. Lauver *University of Rochester, New York, US Aim: To implement and evaluate a transition-to-work model that encourages community collaboration, challenges systemic barriers to successful employment outcomes, and enhances opportunities for competitive employment for people with signicant disabilities in a local community in New York. Methods: A one-year transition-to-work program for students, ages 1821, was implemented and evaluated. Participants were immersed into the workplace, and received classroombased instruction and hands-on internships. An evaluation was conducted to assess interagency collaboration, increased awareness by business partners, and program outcomes in transitioning students from school into competitive employment. Results: While the average employment rate for people with disabilities in the United States hovers below 20%, the rate of successful transition into competitive employment as a result of this community effort averaged 70%. Articulation of a shared vision at the State level for needed systems change resulted from this effort. Conclusions: Establishing effective collaborations that bring together disparate systems such as education, VR, developmental disabilities agencies, providers of employment supports, and business increases opportunities for employment for people with disabilities. Learning gained from local initiatives has informed systems change efforts on a broader scale and improved statewide services and outcomes. Outcomes and cost: Benet of transition from college to employment: The ROSE Project S. Beyer (beyer@cf.ac.uk)*, A.Kaehne, S.Gould & J.Carr *Welsh Centre for Learning Disabilities, Cardiff University,Wales Aim: The ROSE project is based within Havering College and offers supported employment to college leavers. This study describes the ROSE process and evaluates its employment and cost : benet outcomes. Methods: A cohort of 58 college student leavers with intellectual disabilities (ID) was compared to a control group. Employment rates, pay and hours worked were compared. Cost of providing ROSE with education was compared with costs of education transition alone. A nancial cost : benet analysis of ROSE was completed from the perspectives of UK taxpayers, and the young person. Results: ROSE produced an employment rate above national average for people with ID in England, signicantly higher than controls. Average hours worked and wages paid were higher than controls. Young people were nancial better off in employment and taxpayers saved money compared to alternatives placements determined through destination of the matched control group. Conclusions: The paper highlights good practice in helping people with ID transitioning from further education to paid employment, discusses the implications of this model for careers professionals and for current UK post-16 vocational education policy. The effects of a post-secondary transition program on the success of students with disabilities B.Thomas-Bruzzese & L. Aguilera (Laura.Aguilera@Kwantlen.Ca)* *Kwantlen Polytechnic University, Surrey, BC, Canada Aim: To evaluate the impact of a Transition Program (TP) on the success of students with disabilities in post-secondary education at Kwantlen Polytechnic University (KPU). Three aspects were analyzed: student satisfaction, performance in the post-secondary environment, and the quality of the students experience. Method: Three types of questionnaires were completed: program evaluation questionnaires, student performance surveys, and program expectations. Results: Student satisfaction with the TP is positively consistent throughout the years in six indicators: usefulness, recommended, satisfaction, knowledge of roles and responsibilities, familiarity with university resources, and increased condence. Although there was no initial difference in the perceived preparation of TP participants versus non-participants, there were identiable differences at 4 and 10 months into the program. Students expectations and perceived relevance of the topics of the TP varied with the cohort. Conclusions: Participants in the TP differ from non-participants in four areas: knowledge of students roles and responsibilities and familiarity with university resources; adjustment to university; self-regulation resources and skills;and success in their program. Further investigation of the aspects leading to this difference is needed.

Symposium:Teacher attitudes and training Perceptions of inclusion held by Israeli Arab teachers N. Karni (nuritv2@nana10.co.il)*, S. Reiter & D. N. Bryen *Sakhnin Teachers Education College, Sakhnin, Israel Aim: This study explores teachers perceptions of inclusion. Methods: A nationwide survey of 754 Arab school teachers perceptions of inclusion was conducted in Israel. Results & Conclusions: Findings revealed a gap between positive overt attitudes towards inclusion and inclusion in practice. Attitudes are composed of three interrelated dimensions of personality: emotions, cognition and behaviour. Each dimension is a complex interplay of several factors. Incongruence between cognition, emotion and behaviour can be the outcome of cultural expectations. Our nding revealed that Arab school teachers expressed positive attitudes, in general, towards educational inclusion since this is the ofcial statement of the Ministry of Education, but at the same time they did not see the benets of inclusion towards the overall schools reputation. Three quarters of the respondents said that the school had no formal written statement concerning the inclusion of students with special needs. Most teachers expressed the view that their school was only partially accessible. Relations between school teachers and families were found to be very limited. At the same time, we found a signicant correlation between positive attitudes towards inclusion and (1) pre-service and in-service training in special education and (2) the feeling that the administration supports the teacher. How do teachers who work with wtudents with severe mental retardation and multiple disabilities perceive their role? A. Zilberstein-Haham (advazh@bezeqint.net)* & S. Reiter *Haifa University, Israel Aim: The present study examined role perception among special education teachers working with students with severe mental retardation and multiple disabilities. Methods: The perceptions of teachers working within community educational frameworks and those teaching in residential educational institutions were compared. The study examined whether the work framework and the worldview that was derived from it had an inuence on the teachers perception of their role. It also examined whether the teachers work seniority with this special population and the number of professional continuing education courses they had taken had an inuence on their role perception. Results: The study ndings indicated that the teachers were very aware of the importance of their role for the students advancement. Many difculties that arise while working with this population were emphasized. Not many differences were found among the groups regarding the various role perception aspects, but differences were found in areas that were largely inuenced by the nature and targets of the work framework. Conclusions: From the ndings, a unique prole was received of the role perception of teachers working with students with severe mental and physical disabilities. Please Miss:The training of teachers for pupils with ID 18701970 D. Stewart (d.stewart@oakeld.nottingham.sch.uk)* *Oak Field School and Sports College, Nottingham, UK Aim: The 2010 SALT Review of the training of teachers for pupils with ID, highlighted a crisis in the sector. In addition, OFSTED has said that the crucial difference for a child with special needs is quality of teaching. It is interesting to reect on the issue of professional development and draw comparisons with todays situation. Is there anything to be learnt from how training was dealt with in the past? Method: This study of the development of teacher training uses original sources and accounts and highlights key governmental direction and policy. The study includes case studies of particular institutions during this period. Results: The research established that almost a hundred years ago, opportunities were provided which are now being considered as positive new thinking in teaching departments in higher education. There has been on-going debate as to the need for specialised training which has dogged the development of courses and opportunities. Conclusions: Governmental indecision over the value of specialist training for teachers has been an ongoing issue since the 1870s and still continues to effect quality of and condence in teaching pupils with ID. It has a marked impact on pupils opportunities to learn. Posters:
The effectiveness of a sex education program for people with moderate intellectual disabilities G. Couture (germain_couture@ssss.gouv.qc.ca)*, M. Daigle, M-P. Curadeau & C. Mathieu *CRDITED Mauricie et CentreduQuebec Institut Universitaire, Canada Aim: To document the short term effects of the Programme dducation la vie affective, amoureuse et sexuelle (VAAS), a sex education program for people with moderate intellectual disabilities (ID), widely used in Qubec and applied in several locations in Belgium, France and Switzerland. Method: An effect evaluation of the program was recently completed, using quantitative and qualitative data collected concerning 23 participants with ID. Questionnaires were used and interviews were conducted in a pre-post test design, involving the participants themselves, their parents and caregivers. Results: The full paper will document changes that occurred after the program was applied, in the domains of knowledge related to sexuality, views of social and intimate relationships, expression of emotions and feelings, and nally in the attitudes toward sexuality. Conclusion: The effectiveness of the VAAS program will also be discussed in the light of the results of a previous research evaluating its implementation. We will nally consider the methodological challenges related to program evaluation in the eld of sex education for people with ID. Transitioning from childhood to young adulthood: Social inclusion and community integration K. Gray (kylie.gray@monash.edu)*,T. Parmenter, C. M. Keating, S. L. Einfeld & B. J.Tonge *Centre for Developmental Psychiatry & Psychology, School of Psychology & Psychiatry, Monash University, Australia Aim: Despite recognition of the importance of integrated community living and support, parents remain the primary caregivers of young adults with intellectual disability (ID) and employment rates remain low. This study aimed to longitudinally investigate the changes in living arrangements and daytime activities in a community population of young people with ID. Method: The sample consisted of 536 participants aged 418 years at Wave 1, who were followed up at Wave 5 when aged 20- 36 years. Information was collected on their living arrangements and daytime activities at both time points. Results: A signicant proportion of young people were still living with their parents at Wave 5. Parents caring for their adult child reported high levels of mental health problems and dissatisfaction with the long term care arrangements for their child. Very few young people were in paid employment. Over one third of the sample participated in a structured daytime activity for less than ten hours per week. Conclusions: These results indicate that provision of accommodation and employment services for young adults with an ID is lacking. Greater attention is needed to address these issues and facilitate social inclusion and integration for young people with intellectual disability. Inclusive education: Effects of multidisciplinary action at APAESP, Sao Paulo, Brazil V. Perico, E.Cavalheiro & L. Guilhoto (lauragui@gmail.com)* *Inclusive Education Unit of Association of Parents and Friends of Individuals with Intellectual Disability, Sao Paulo, Brazil Aim: To describe multidisciplinary strategy in inclusive education at APAESP (third party organization, Sao Paulo, Brazil) performed by teachers, speech pathologist, psychologist, occupational therapist and social worker. Methods: Supportive knowledge was provided to teachers in inclusive environments for children with intellectual disabilities through: (1) biweekly formal academic 90-minute classes; (2) weekly group case-discussion; (3) local regular schools biannual visits by teachers and professional from area the child has more difculties; and (4) monthly discussion with families, psychologist and elected professionals. Individual student learning evaluation was performed in beginning and end of academic year (2011) through likert-scale questionnaire answered by teachers about domains: autonomy, socialization, communication, logical thinking and motor system. Results: Pilot analysis for 20 children revealed overall improvement with multidisciplinary strategy. Individual median score increase was 24.9% (IQR 051.8). Higher group scores increments were observed in autonomy (31.5%), socialization (30%), logical thinking (29%) than in communication (20.5%) and motor system (20%). Conclusions: Although diverse inclusive education strategies exist, our data reinforce multidisciplinary supportive action benets for intellectual disabled children.

Posters: Communication learning support software for people with Aspergers syndrome:The rst stage of its effective development K. Izutsu (idutsu@gmail.com)*, K.Tajitsu,T.Tatsumi,Y. Nakano & T. Wada *Hokkaido University of Education, Japan Aim: We have developed Panic Reection Model (PRM), a learning support software to help people with Aspergers syndrome (AS) learn to deliberately avoid panic behaviour, and examined its effect (Tajitsu et al. 2011). Currently we are developing the Communication Reection Model (CRM), a comparable software for enhancing communicative skills. Educational intervention for people people with AS is ideally implemented by well-trained teachers or tutors, the shortage of whom necessitates some computer-assisted substitutes for them for the present.This presentation shows how CRM works by demonstration and reports the results of further PRM implementation. Methods: PRM and CRM describe types of behaviour that lead to panic or miscommunication, dividing them into several small steps. For each step, the behaviour that learners actually exhibited in their former panic or miscommunication is presented along with other behavioural choices they could have made. Results: PRM/CRM served to acquaint the learners that there were other choices of behaviour than the one actually chosen, and to encourage the learner to try to select a more appropriate choice. Conclusion: Verbal intervention by software like PRM/CRM is effective in helping people with AS to learn behavioural and communicative skills needed for everyday life. Inclusive employment: Will we know it when we see it? R. Lysaght (lysaght@queensu.ca)* *Queens University, Kingston, ON, Canada Aims: Research of the past 30 years has established supported employment as the gold standard in vocational programming for persons with intellectual disability, and criteria exist to determine the delity of placement programs relative to accepted best practice. Standards and metrics typically reect integration, but fail to address inclusion. The goal of this study was to identify central features of inclusive employment for adults with ID, to identify existing outcome indicators and benchmarks across the spectrum of productivity-related options, and to create a draft set of standards for monitoring success in achieving inclusive employment outcomes. Methods: A scoping review of the research and grey literature was used to identify and dene productivity options, and examine the metrics currently in use by researchers and accountability organizations to determine success. Results: The review identied an initial set of constructs central to inclusive employment that can be applied to a range of productivity choices. A limited number of quantitative and qualitative outcome indicators were identied that directly address inclusion. Conclusions: Fundamental principles underlying inclusive employment can be used as a starting point in identifying relevant performance indicators. Research is needed to test the relevance and evaluability of the proposed model. Specialist support from a special school for pupils with complex Needs in inclusive mainstream primary schools A. Mallett (angelamallet@fsmail.net)*, J. Deardon & J. Lester *Oak Field School, Nottingham, UK Aim: Specialist teachers from a special school identifed areas in which learning and teaching could be improved for pupils with complex needs in mainstream primary schools. Method: Processes involved in the inclusion of pupils were investigated via observation and interviews with school staff. Using the information acquired, staff training, new processes and methods of working will be developed to enable schools to improve practice. Specialist teachers will use data comparisons to evaluate the impact of the new approaches on pupil progress. Results: An evaluation study was commissioned by Nottingham City Council to establish outcomes for service users and this will be used in the study. Conclusion: The specialist teachers input from a special school improved the developmental levels of pupils with complex needs in inclusive primary schools. There was also improved access to the curriculum and increased experiences for the pupils. Posters:
Linking the curriculum for Japans Special Needs Education to the ICF T. Mita (mita@clayheart.or.jp)* & F. Mikami *Kawasaki University of Medical Welfare, Japan Aim: In the 2009 amendment to the curriculum for schools for special needs education, the new teaching guideline independent activities was introduced to teach skills that ease difculties in learning and daily living. The present study aimed to link the independent activities to International Classication of Functioning, Disability and Health (ICF) categories. Methods: Teaching staff in schools for special needs education were surveyed. The independent activities consist of 6 major items accompanied by a total of 26 sub-items. The ICF involves 4 components: body functions and structures, activities and participation, environmental factors and personal factors. Thirty items at the rst level of classication were employed for the present investigation, excluding personal factors. Results: The independent activities were linked not only to activities and participation in the ICF, but also body functions and structures and environmental factors. Amongst the independent activities psychological stability had the largest degree of compatibility with ICF items (15 items); while health care and understanding situations had the smallest number (6 items). Conclusions: The results suggest that a combined use of independent activities and ICF categories provides a more useful and quantitative foundation to assess the independent activities and to facilitate individual teaching plans. So much to say: Examining the postsecondary outcomes of a young adult with an intellectual disability J. Pirtle (jody.pirtle@gmail.com)*, S. MacFarland, P. Brodsky & D. Perino *University of Arizona, Tucson, Arizona, US Aim: This study explores the question: How do students with intellectual disabilities negotiate the transition to adulthood? Methods: Using a qualitative case study research design, the authors examined the postsecondary outcomes of a young adult with an intellectual disability who spent her high school years in a segregated educational setting. Data collection for this study involved multiple sources including archival data, interviews, observations, and physical artifacts. Results: The outcomes examined included employment preparation, educational status, and social supports. Conclusions: Results are considered in terms of the participants perspectives about the post-secondary program. Their perspectives may suggest directions in transition planning for students with intellectual disabilities. Skill training, access to appropriate employment and empowerment: an experience for labour inclusion in Bolivia M. Querejazu (moira_querejazu@yahoo.co.uk)* & L. Delgadillo Cossio *Centre for Young People with Special Need, Bolivia Aim: The aim is to enable differently abled young people to participate in society through: (a) skill development and social skills, (b) developing potential, (c) vocational training, (d) preparing employers, (e) providing professional support both to employees and employers and (e) changing attitudes in society towards the differently abled. Methods: Our methods include skill training and systematizing the whole process through action research undertaken by psychology students from the State University. Based on corporate social responsibility, national awareness raising campaigns and advocacy will occur and include the participation of leaders among the differently abled young adults. Results: Differently abled young adults secure appropriate employment. Employers are better equipped. Employers within corporate social responsibility are raising the number of differently abled people among their staff (complying with the current 4% as per legislation in Bolivia). Differently abled young adults and their families are able to participate more fully in society which has reduced levels of prejudice and marginality. Conclusions: The results of the research will provide a basis for the application of a model for labour inclusion, replicated in different regions of Bolivia. Results will generate a questioning of their role in society regarding work, family and in society.

Posters: The effect of contact with persons with intellectual disabilities on attitude of students M. Saito (saitou-m@star.sagami-wu.ac.jp)*, G.Toth,Y. Ozaki & Y. Okabe *Sagami Womens University, Japan Aim: The aim of this study was to investigate the prejudice toward people with intellectual disabilities and the effect of contact experience on students attitude. Methods: The rst group of participants was 155 students who belong to a womens junior college. They were asked to complete a questionnaire on attitudes related to intellectual disabilities. The second group of participants was 126 undergraduates who belong to the nursery and kindergarten teacher training courses. They were asked to complete the same questionnaire before and after their welfare facilities eld practice and hands-on training. Results: The collected data from the rst group was analyzed by principal component analysis. The result indicated two important components: (1) level of normalization and (2) avoiding contact. The second group of participants was divided into three groups based on the type of the welfare facilities they had eld training (childrens home, facilities for persons with intellectual disabilities and control group). The result of ANOVA showed signicant the main effect of training, the interaction effect of the training eld and training experience. Conclusions: These results suggest that prejudiced attitudes are improved by eld training in institutes for persons with intellectual disabilities. Posters:
How do teachers lead pupils with profound multiple and intellectual disabilities to participate? M.Takano (myk38tb@yahoo.co.jp)* & M. Udo *Faculty of Special Needs Education, Hyogo University of Teacher Education, Japan Aim: Most children with profound multiple and intellectual disabilities communicate primarily in a pre-symbolic way, using very subtle expressions; e.g., vocalization, facial expressions, and changes in muscle tone. In schools for children with special educational needs, well-trained teachers interact with pupils appropriately even when they exhibit only very subtle movements with severe physical restrictions, which seems to help pupils to participate in class activities. In this study, we observe and describe teachers interactive behaviours with pupils, focus on their responses to subtle movements, and discuss how plausible interactive strategies by teachers can contribute to childrens participation in various activities. Methods: Teachersexpressions and pupils behaviours are transcribed with multimodal methods from the video-recorded data, and analyzed qualitatively. Results: Teachers responded to pupils subtle movements adequately as well as promptly. They treated pupils reactions as having positive communicative implications, highly relevant to the contextual ow of the class activities. Conclusions: Teachers involved in communicating with children with profound multiple and intellectual disabilities, with adequate demonstrations, can provide them with useful clues for attending various class activities. Cross cultural study on the role of supported employment agencies in promoting the health of People with intellectual disabilities: A comparison between the UK and Spain E.Vigna (vignae@cf.ac.uk)*, M. Kerr, F. B. Jordn de Urres, M. A.Verdugo & S. Beyer *Welsh Centre for Learning Disabilities, School of Medicine, Cardiff University, Wales Aim: The study compares the role of supported employment agencies in promoting the health of people with intellectual disabilities employed in real jobs in the UK and in Spain. The aim is to highlight differences between these two European countries considering the strategies agencies use to support employees with intellectual disabilities health and to prevent high risk behaviours. Methods: Agencies from both countries were surveyed using a web questionnaire: 106 agencies took part in this study. Results: The survey evaluated the agencys awareness of health problems of people with intellectual disabilities (eating habits, smoking and alcohol use). Coping strategies used by agencies to address health problems were investigated. The paper describes levels of awareness of health among supported employment agencies, the kinds of health promotion assistance agencies delivered directly, and the extent to which supported employment agencies play a mediating role in health promotion at work. Conclusion: The paper identies differences between the UK and Spain agencies ways to assist employees with intellectual disabilities health. The paper identies implications for agencies in improving their role as mediators in promoting healthy lifestyles for employees with intellectual disabilities.
Reading the world A second chance for learning to read:The effects of a literacy intervention program on reading skills and well being A. Shengross (avivit78@yahoo.com)*, S. Riter & M. Shany *University of Haifa, Faculty of Education, Department of Leadership and Policy in Education, Israel Aim: The presentation will describe research done over one year in which a literacy intervention program was provided at the University of Haifa, Israel to a group of 21 adults with mild to moderate cognitive impairments. Methods: Quantiative and qualitative methods were used within a mixed method approach. Results: Findings indicated that participants gained signicant improvements in decoding, word reading, reading comprehension, working memory and writing. No correlation was found between the level of impairment and achieved level of literacy. This nding indicates that having a cognitive disability does not prevent successful reading acquisition. Participants, parents and staff also described the programs contributions to self condence, enhanced personal status in social and familial circles, motivation for further learning improvement in daily life activities, usage of community services, enhanced use of different media and pursuit of new leisure activities. Conclusions: The results indicate that with appropriate interventions adults with cognitive disabilities can learn to read and by this improve their well being and quality of life. The research can serve as a model for other intervention programs in literacy.

Symposium: Involving people with ID in care and research Clients perspectives to evaluate competences of support staff P. Embregts (P.J.C.M.Embregts@UvT.nl)*, L. Heerkens* & E. Roeleveld *Tilburg University, Dichterbij Kennisn@, The Netherlands Aim: More often, people with intellectual disabilities are requested and expected to formulate their own needs and questions regarding their health care and support from staff. The goal of this exploratory study was to assess what people with intellectual disabilities value as important competencies in support staff. Method: This study consisted of two phases, involving people with intellectual disabilities both as co-researcher and participant. In the rst phase persons with mild to borderline ID were interviewed. In the second phase focus group interviews were conducted by persons with mild to bordeline ID, based on the results of the rst stage. Qualitative analysis, using Atlas.ti, was conducted in order to cluster and interpret the results. Results: Participants highlighted both positive and negative aspects in their support staff, clustered in four meaningful categories: building a relationship, support, communication and knowledge of clients. Conclusions: Involving people with intellectual disabilities, both as participant and co-researcher, enriches research practice. The participants revealed valuable information about support staff. Training people with intellectual disabilities to become experts by experience P. Embregts (P.J.C.M.Embregts@UvT.nl)*, M. Grimbel du Bois* & C.Verbrugge *Tilburg University, Dichterbij Kennisn@, The Netherlands Aim: Empowerment has become an important focus in the lives of people with intellectual disabilities. To stimulate the process of empowerment we developed an education program experts through experience. This program is based on the underlying presupposition that experiences of people with intellectual disabilities can be helpful to understand and support other people with similar experiences. Method: The education program is based on one developed for people with psychiatric and mental problems. The program includes reection on ones own experiences, mutual support, and using expertise in daily practice. Participants (n = 12) completed a questionnaire on empowerment as well as a semi-structured interview. Results will be discussed, including transfer of such a program to people with intellectual disabilities. Results and Conclusions: The expected results of this project are gaining insight in: (1) the process of reection on own experiences, (2) mutual support by sharing those experiences with each other, and (3) implementing expertise in collaboration with care providers. A rst attempt in developing a client-perception questionnaire regarding quality of staff-client interactions W. van Oorsouw (W.M.W.J.vanOorsouw@UvT.nl)* & P. Embregts *Tilburg University, Dichterbij Kennisn@, The Netherlands Aim: Meaningful relationships between support staff and clients with intellectual disabilities are essential for good quality of care. Within the relationship, two parties are involved (i.e., staff and client) and it would, therefore, be natural to use both staff views and clients perspectives to evaluate the quality their interactions. The use of client perceptions still is relatively unusual in our eld. We aimed to make a rst attempt in developing a questionnaire to assess the clients perceptions regarding the quality of the relationships with their staff. Method: Based on a study of Roeleveld et al., we selected questionnaire themes that clients considered important in the relationship with their staff. We developed a rst version of the questionnaire and practiced with it in a pilot study. Results and Conclusions: We would like to explain how we made a start in developing our questionnaire. Following, we would like to discuss the need of such an instrument in our eld. Having an instrument that could be lled in quickly and easily by clients would help exploring client perceptions regarding the quality of their relationships with staff. This would be a preferred extension to existing measures.
Empowerment, Rights, and Ethics
Symposium: Multiple topics: Rural services & inclusive research Working with parents with ID in Ireland A. Asgharian (psychologynexus@ymail.com)* *Intellectual Disability Service, Enniscorthy Health Centre, Ireland Aim: To describe some of the current work with parents with intellectual disabilities (ID) taking place in Ireland. The subject matter stems from one persons clinical experience who trained and worked in London, U.K. before moving to a small town in the south of Ireland. Method: The specialist approach demands work that takes one from the individual to the system level. It demands high quality, open parent capacity report writing which educates professionals at the same time as endeavouring to provide a fair and learned assessment of the individual within the family context. It necessitates the training of fellow professionals, particularly those whose primary remit is the needs of the child. The story of what it is like to work in this specialist area both in the public service and in private practice across the country of Ireland will be presented. Results & Conclusions: Clinical observations show that the issues related to this client group are similar to those in the U.K., yet it appears that the needs of this population are less recognised within the system. Progress has to be measured by each step in the direction towards increased awareness and understanding of those who work with this group. To live and stay in society As a person with learning difculty B. Nyqvist Cech (berit.cech@kau.se)* *Department of Social Studies, Karlstad University, Sweden Aim: Fifteen years ago an ongoing research-circle was started. We are ve women and one man with learning difculties, 3067 years old, working with a researcher. This work is based on a wish that people with learning difculties have to learn about and become visible in society. Method: This research-circle uses the participatory action research approach, both to make the co-participants themselves visible in society and to learn about society. Results: The six participants have reached their goal of being visible they are empowered. They say they feel good. They are known today in their society as Alobis. Conclusions: It takes good will, time and effort, but is possible for people with learning difculties to make a change, both for themselves and others in same situation. Being heard: Maximising participation for women with intellectual disability in qualitative research J. Conder (jenny.conder@otago.ac.nz)*, B. Mirn-Veitch & S. Gates *Donald Beasley Institute, Dunedin, New Zealand Aim: Under the social model of disability, disabled people have a crucial role in research that is about them. One aim of this study, which explored mental health with women with intellectual disability, was to maximise opportunities for involvement in the research. Method: Regional People First groups provided advice and assisted with recruitment of participants. The researchers presented the research to women members at local meetings. Plain language forms assisted the womens understanding of the purpose and participation requirements of the research. Results: The method of recruitment achieved the aim of providing an opportunity for 25 women with intellectual disability to independently participate in research. Although all women appeared competent to provide consent, some found it difcult to express in-depth opinions when interviewed. Adjusting questions and working with the womens understanding made it possible to gain insight into their life and thoughts about the issues. Conclusions: Women with intellectual disability may choose to participate in research when invited and meaningfully engage in qualitative processes. While in-depth interviewing may provide challenges, by working with women with limited expressive language it is possible to gain an insight into their lives and value their contribution to the understanding of others.

Symposium: Sexuality and intellectual disability I Discourses of intellectual disability and sexuality in the Republic of Ireland M. Feely (michaelfeely1@gmail.com)* *School of Sociology, Social work and Social Policy, Queens University Belfast, Northern Ireland Aim: My paper attempts to provide an account of the competing, and often contradictory, discourses around sexuality which circulate within Irish disability services and to explore the barriers these create for people with intellectual disabilities who wish to form relationships. Method: Firstly, I adopt a genealogical method and chart recent shifts in discourse concerning intellectual disability and sexuality. Using this approach, it becomes apparent that discursive shifts, which we consider to be progress often lead to new barriers. Secondly, I consider the issue from a queer perspective and examine sex education resources and research into staff attitudes. I also contrast two very different love stories: a normal love story found in a sex education manual and an abnormal love story which occurred in a residential home. Results and Conclusions: All of this leads me to contend that the progress which is being made in terms of supporting people with intellectual disabilities around sexuality remains problematic. To begin, the supports provided are conspicuously heterosexist. Furthermore, people with intellectual disabilities are expected to perform romantic heterosexuality to a standard that not only meets, but far exceeds, the performances of their non-disabled peers. Meanwhile, people who display difference in sexual performativity continue to be pathologised.
Symposium: Sexuality and intellectual disability II Considering sexuality, social norms and sterilisation C. Hamilton (hamiltca@waikato.ac.nz)*, G. Kelly & M. Feely *University of Waikato, Hamilton, New Zealand Aim: Despite policy statements such as all parties must take effective and appropriate measures to eliminate discrimination against persons with disabilities in all matters relating to marriage, family, parenthood and relationships, on an equal basis with others (UN Convention on the Rights of Disabled People, 2007) non-therapeutic sterilizations, sought primarily on behalf of intellectually-disabled women, continue to be requested as a support management tool. Method: Enacting change in the area of sexuality support for intellectually-disabled people means interrogating taken for granted ideas that make up our sense of what the world is and how it operates. Talking about these issues can be difcult. Yet if we are as Butler (2000) asserts, compelled by norms that none of us chooses, how to struggle against the constraints norms impose or work within them in more productive ways, are questions that require time for deep and productive consideration. Results and Conclusions: This presentation will consider how key socio-sexual norms that constitute individuals as certain kinds of (sexual) beings condition and constrain the position of young intellectualdisabled women, leaving them vulnerable to the violation of bodily integrity that sterilisation represents.
Training advocates and law enforcement on communication and accommodations Anxiety and containment: Responses to the sexuality of people with intellectual disability G. Kelly (graciekelly@gmail.com)* *Department of Applied Social Studies, University College Cork, Ireland Aim: In Ireland, there is a history of specialist services for people with intellectual disabilities being provided by Roman Catholic religious organisations. There is also a history of collusion between the Irish state and the Roman Catholic Church in concealment and containment of perceived sexual transgressions. This paper will explore the historical links between religion, sexual anxiety, and intellectual disability in Ireland, and the effect of such a context on current service provision. Method: Drawing on the work of Hawkes (1996), I explore the notion of a trans-historical anxiety around sexuality, which is managed through the hierarchical ordering of sexual expressions, where the heterosexual, rational, procreative couple is privileged. Following this, I discuss the experiences of a group of people with ID in an Irish disability service, along with the views of parents and staff towards their sexuality. Results and Conclusions: Focus group research with people with ID, parents, and staff highlight a dominant discourse of anxiety around their sexuality, along with practices which aim to contain, rather than support, sexual exploration and expression. Anxiety around people with IDs sexuality is linked to the perception that their sexual expression transgresses socio-sexual norms regarding the rational, independent, procreative couple. M. Hammond (Marilyn.Hammond@usu.edu)* & S. Pavithran *Utah State University, US Aim: Women and men with disabilities are more likely to be victims of sexual assault and domestic violence. They experience more intense abuse over a longer period of time, often with multiple incidents and multiple perpetrators. In Utah, as in other states, victims with disabilities are often unable to protect themselves, are not knowledgeable of risk reduction or victim services, and may have difculties accessing these services. There are physical, programmatic and attitudinal barriers that prevent victims with disabilities from accessing services, reporting, and escaping violence. Method: A collaborative training project with the Center for Persons with Disabilities at Utah State University, the Utah Domestic Violence Council, the Utah Coalition Against Sexual Assault and the Sego Lily Center for Abused Deaf was funded to improve the knowledge of advocates and law enforcment on how to effectively communicate with, interact with, accommodate and assist victims with disabilities. A handout was developed with communication tips, and resources. Results and Conclusions: The expected outcomes of this training are to positively change attitudes, increase understanding and appropriate behaviors towards people with disabilities, improve interaction and communication techniques, increase awareness and actions regarding hidden disabilities, improve accessibility and accommodations, and increase knowledge of disability resources.

Symposium: Restraint and seclusion A (clear) legal denition of restrictive measures in the care for people with intellectual disabilities B. Frederiks (b.frederiks@vumc.nl)* *VU Medical Centre, EMGO+, Amsterdam, The Netherlands Aim: Restraints are still often used in the care for people with intellectual disabilities (ID). It is unclear, however, when and at what moment daily measures restrict the freedom of clients. Is the use of surveillance technology a restraint? In this presentation the boundaries of the term restraint are discussed. Also the difference between a deprivation of liberty and a restrictive measure is addressed. Method: Relevant national and international literature has been reviewed, including the (Dutch) Care and Coercion Bill, which only counts for persons with ID and dementia. Results: The European Court of Human Rights (ECtHR) has drawn a clear distinction between the deprivation of liberty of an individual (which is unlawful, unless authorized) and restrictions on the liberty of movement of an individual. The Mental Capacity Act (UK) makes the same distinction. In Dutch law this distinction is lacking; clients who face long and intrusive measures are not protected by extra safeguards. Conclusions: Current and future rules for compulsory care create uncertainty about the legal position of people with intellectual disabilities. Symposium: Does autism exist?
Autism and empathy, and the autisitic spectrum P. McDonagh (patmc@cooptel.qc.ca)* *Concordia University, Montreal, Quebec, Canada Aim: To explore the relation between autism and empathy in recent research on the autistic spectrum. Method: Historical analysis. Results: The word empathy entered the English language only in the early 20th century, and then as a term used in literary criticism. Recently, though, empathy has been regured as a critical attribute for successful social functioning, both on the individual and societal level. In Simon BaronCohens schema, in which autistic people lack a theory of mind, empathy also becomes the opposite of autism. Not surprisingly, then, the concepts of empathy and autism seem to be enjoying similar trajectories in their centrality to contemporary discourses of identity and pathology. I will explore this possibility through a preliminary tracking of the social and cultural signicance of both terms over both the recent and longer term, in addition to considering the relation of autism and empathy to precursor notions such as intellectual disability and sympathy, respectively. Conclusions: The rise of autism as a spectrum disorder, beginning in the 1980s, is closely connected to the increasing prominence of empathy as a marker of social success. Does autism exist?
Correlates of restraint and seclusion among adults with intellectual disability J. Merineau-Cote (julie.merineau@gmail.com)* & D. Morin *Universit du Qubec Montral, Quebec, Canada Aim: The use of restrictive measures among persons with intellectual disabilities (ID) is a matter stimulating much controversy. There are several types of restraints: physical, mechanical, chemical, and seclusion. These measures are used with people when they show aggressive behaviour that may cause harm to the person himself or someone else. The goal of this study is to describe the characteristics of people with ID with whom restraint and seclusion are used. Method: Questionnaires were completed by 81 staff members working with people with ID (18 years old and older) about some personal, behavioural, and environmental characteristics that could be related with restrictive measures. The type and severity of aggressive behaviours were measured by the Modied Overt Aggression Scale (MOAS). Results: Results on variables (personal characteristics, health problems and type of aggressive behaviour) associated with restraint and seclusion with people with ID and aggressive behaviour will be presented. Conclusions: The present study represents progress in the knowledge about the use of restrictive measures with people with ID. It is also the rst study regarding correlates of restraint and seclusion with people with ID in Quebec.
C. Goodey (cfgoodey@yahoo.co.uk)* *London, England, UK Aim: To discuss the nature of the concept of autism. Method: Historical analysis. Results: Much institutional provision, funding and research currently go into autism. On prudential grounds, if no other, we therefore need to know whether this label has any stable basis. A historical approach raises questions that must be answered before we can be condent that it has one (the genetic approach might also provide it, but we cannot rely on mere promises). Autism was conceived only two generations ago. Does this mean that it existed in the past in an unrecognized state, and is recognised now? That it did not exist in the past, but does now? Or that it does not exist even now? From Bleulers coining of the term, through Kanners and Aspergers creation of the concept(s), to Wing, Frith and Baron-Cohen, the dening lists of ingredients have so far come from a human consensus that changes radically along with changing forms of social organization and their associated anxieties. We might at least rephrase the question as, Does autism have a future? Conclusions: The reality of autism cannot be established independent of the forms of social organization within which it arises. Rabies, Lycanthropy, and Love: Hygienic Irregularities in Medieval Islamic Medical Scholarship L. Rose (lynnrose@truman.edu)* *Truman State University, Missouri, US Aim: The history of intellectual disability through the lens of ninth- and tenth-century Islam. Method: Comparative review and analysis of reception history. Results: In Goodeys history of the concept of intellectual disability the medieval reception, codication, and organization of the ancient Graeco-Roman texts by scholars of the Golden Age of Islam (Al-Masuji and Ibn Sina) is critical. The key issue in this discussion is that practitioners in the twenty-rst century, with careful scientic observation and condence equal to that of the tenth-century Islamic scholars, have also grouped animal passions and displays of irrationality together and called them Autism, a phenomenon that sits between psychiatric illness and intellectual disability and, especially in consideration of ASD, materializes in a near-innite conguration of symptoms. Conclusion: Many aspects of phenomenon currently referred to as Autism and Austism Spectrum Disorder, the diagnosis of which has increased tenfold in as many years, exist as an essential reality. The symptoms and iteology shift over time and from one culture to the next often overlapping with other expressions and assessments of the human condition.

Symposium: Self-advocacy Breaking out of segregated trajectories: Self advocacy and social capital T. Buchner (tobias.buchner@univie.ac.at)* *University of Vienna, Switzerland Aim: This paper contains results of the rst wave of eld work of the project Quali-TYDES (funded by ESF and FWF). Life stories of 80 young disabled people from 4 European states (Austria, Czech Republic, Ireland and Spain) were compiled and analyzed. This presentation will focus on results from the Austrian sample, focusing on the impact of self advocacy on the biographies of young people with an intellectual disability. Method: Life story interviews were conducted with 20 people, all born in the 1980s and from different regions across Austria. Following a life course approach (Priestley 2001, 2003), the research team analyzed data using the concepts of trajectories, pathways, turning points and resources (social, cultural and economic capital see Bourdieu 1986). Results and Conclusions: Most participants were pushed into a segregated trajectory. The diagnosis special educational needs led to education in special schools and work in sheltered workshops. Getting in touch with self advocacy enabled these individuals to press for a turning point in order to disrupt their segregated trajectory. Using their newly-enlarged social network, participants were able to move from group homes to apartments and attain jobs on the rst labor market.
Symposium: Self-advocacy (continued) Understanding the development of self advocacy in Victoria, Australia: The early years P. Frawley (p.frawley@latrobe.edu.au)*, C. Bigby & P. Ramcharan *Department of Social Work and Social Policy, La Trobe University,Victoria, Australia Aim: International literature suggests the origins of self advocacy lie in the philosophy of normalisation and the parent movement. Reinforce, the rst self advocacy group in Victoria, was established in 1980. Current members wanted to bring together and use their history. Since 2006 a collaborative group including Reinforce members and academic partners have investigated the history of self advocacy in Victoria. Method: A grounded theory approach was used to analyse organisational and policy documents, and 25 conversational interviews with those involved in self advocacy from the late 1970s to the mid 1990s. Results: Catalysts for the development of self advocacy were the deinstitutionalisation of people with mild intellectual disability, opportunities for sharing common experiences, and a period of policy and service ux. The inuence of a changing policy context and the shifting political and professional orientation of the allies who acted as the guiding hands is illustrated by the shift from radical outward-focussed actions in the early days, to an inward organisational preoccupation with survival and project work. Conclusions: We contrast the development of self advocacy in Victoria with accounts of its emergence elsewhere, and draw out its contributions to both private lives and public issues.
Bottom up and top down: Inclusive research into self advocacy R. A. Hopkins (robhopkins100@gmail.com)*, G. Minogue & J. McGrath *Inclusive Research Network, N.I.I.D., Trinity College, Dublin Aim: How inclusive researchers with a learning disability created best practice Representative Self Advocacy guidelines aimed at creating a newlyemerging Inclusive Research-Self Advocacy Forum. Method: There is an absence of independent self advocacy in the Republic of Ireland, but a welldeveloped and skilled network of inclusive researchers. Two researchers with a learning disability, supported by a professionally-engaged research coordinator, conducted a series of purposive interviews with chief executives of learning disability service providers and representative self advocates from the same organisations. We reect on the differing power dynamic among self advocates, researchers advocates, and service provider senior managers. Contrasting opinions are expressed by actors from opposite sides of the power dynamic concerning the same example of best practice. Results: An illustrated pamphlet of best practice guidelines was produced juxtaposing the contrasting perspectives of the representatives of the heads of an organisation and representative self advocates. Conclusions: In this paper, members of the group highlight the learning that emerged from carrying out inclusive research. They also highlight effective strategies that encourage self advocacy within service organisations, and which promote the emergent innovation of self-advocate inclusive researchers. The impact of life story work in older people with intellectual disability and their facilitators Britt-Evy Westergrd (bew@aldringoghelse.no)* *Ageing and Health, Norwegian Center for Research, Education and Service Development Aim: Without being clear in their descriptions, studies of life story work (LSW) among people with an intellectual disability indicate identity and personal development in the narrator and the listener. The studys objective was to explore the process and value of LSW and the participants involvement in the research process. Data was collected from 44 participants: six experienced life story workers from three different countries, 19 service recipients (SR), and 19 service providers (SP). Method: In the rst phase, a Delphi method was used to develop two semi-structured interviews, a book about doing LSW, and information sheets in easy-to-read text. In phase two, a triangulation was used to collect data on the impact and the process of LSW. A content analysis, in order to reveal similarities and differences, was used in both phases. Results and Conclusions: Early indications of ndings show that the research tools developed through the Delphi method increased the reliability and validity of the study and offered something useful back to the participants and the service in general. The study identied important factors for person-centred services which will be discussed at the conference in relation to best practice in services for older people with an intellectual disability.

Symposium: Inclusive research methods Analyzing qualitative data with people with ID M. Herps (m.herps@vilans.nl)*, W. Buntinx & L. Curfs *Vilans and Gouverneur Kremers Centre, Maastricht University, Utrecht, The Netherlands Aim: In the current study, we investigated the role of people with intellectual disabilities (ID) in analyzing qualitative research data. Method: The study consisted of interviewing people with ID on their experiences with their individual support plans. In analyzing research data with people with ID, the experiences and guidelines of Tuffrey-Wijne and Butler (2010) were used. Interviews were summarized and read aloud to the researchers with ID. Every comment, question or expressed emotion was noted and discussed. Results: The method proved to be of value for both the researchers with and without ID. By proceeding along these lines, important themes emerged from the interviews. Their contribution complemented those of the other members of the project team. Conclusions: People with ID can full a meaningful role in analyzing qualitative data. Furthermore, collaboration between researchers with and without ID proves to be empowering for both researchers with ID and researchers without ID.
Symposium: Advocacy and rights Predictors of advocacy in parents of young children with developmental delays and disabilities P. Minnes (patricia.minnes@queensu.ca)*, M.Villeneuve & J. Burbidge *Queens University, Kingston, Ontario, Canada Aim: This study describes the advocacy activities of Canadian parents of young children with developmental delays or disabilities and identies factors that predict advocacy. Method: HELPS Inc is a Canadian research team focusing on health, education, and parent factors promoting the social inclusion of young children with developmental delays and disabilities. Parents (n = 151) of children aged 3 to 6 years completed an online or paper survey. Advocacy was assessed using the Parent Advocacy Scale (Nachshen, Anderson, & Jamieson, 2001). Results: The most frequent types of advocacy reported were phone calls (33%) and ofce visits or attending meetings (53%). Correlations and a multiple regression were conducted to examine the relationship between advocacy and the following variables: disability type; child adaptive behaviour; formal supports used; parents knowledge about childs disability; satisfaction with childs inclusion; parent collaboration and involvement with school; and parent positive gains. Greater involvement in advocacy was predicted by having a child with autism, lower collaboration and involvement with school, and greater perceived knowledge of childs development/disability (p < .05). Conclusions: Parent advocacy may be considered an active form of coping and a positive adaptation to stress. Implications and directions for future research will be discussed. Inclusive citizenship: Difference and rights in the lives of people with high support needs L. Curtice (lisa.c@scld.co.uk)* *Scottish Consortium for Learning Disability (SCLD), Scotland, UK Aim: To consider the meaning and experiences of inclusion in people who challenge services in order to understand how their participation could be increased and to explore how to include their experiences in evaluative studies. Method: Case studies with 14 people with intellectual disabilities who were assessed as needing at least one-to-one support in their day service or supported living setting or who were considered difcult to discharge from long-stay hospitals. Interviews and observations were used to identify barriers to, and facilitators of, inclusion in their everyday lives. Results: All the research subjects were able to contribute to the ndings, albeit in different ways. Inclusion was made possible in their lives through close relationships, communication support and attention to health needs. However these needs were less likely to attract funding than issues of dependency and public protection, thus limiting their potential for inclusion. Conclusions: It is important that research challenges the exclusion of people with communication needs, challenging behaviour, and cognitive incapacity, and seeks to be inclusive in its practice. The need for support to communicate or participate in evaluation should be seen as a priority for services and not as a reason for marginalisation or exclusion. S-A. Cooper (sally-ann.cooper@glasglow.ac.uk)*, A. McConnachie, L. Allan, C. Melville, E. Smiley & J. Morrison *Institute of Health and Wellbeing, University of Glasgow, Scotland Aim: To determine whether the extent of deprivation of the area a person lives in affects their access to services, hence contributing to health inequalities. Method: A cross-sectional study design was used. Interviews were conducted with all adults with intellectual disabilities within a dened location (n = 1,023), and their medical records were reviewed. Extent of area deprivation was dened by post-code. Results: Area deprivation did not inuence access to social supports, daytime primary health care services, or hospital admissions, but people in more deprived areas made less use of secondary outpatient health care [rst contacts (p = 0.0007); follow ups (p = 0.0002)], and more use of accident and emergency care (0 = 0.02). Women in more deprived areas were more likely to have had a cervical smear; there was little association with other health promotion uptake. Area deprivation was not associated with access to paid employment, day time occupation, nor respite care. These results were essentially unchanged after adjusting for type of accommodation and level of ability. Conclusions: Deprivation may not contribute to health inequality in the population with intellectual disabilities in the same way as in the general population. Focussing health promotion initiatives within areas of greatest deprivation would be predicted to introduce a further access inequality.
Selecting appropriate research designs for research participants with intellectual disabilities I.Tuffrey-Wijne (ituffrey@sgul.ac.uk)* & L. M. G. Curfs *St. Georges University of London, UK Aim: There is a fast growing body of research that involves people with intellectual disabilities (ID) as study participants, but the effect of participants ID on the data collection and analysis, and the methodological challenges this poses, have been insufciently addressed. This presentation will: (1) review and discuss the range of methodologies and data collection tools that can be used by researchers when their study population includes people with ID, and (2) consider the factors that affect researchers methodological choices. Method: Literature search. Results: The inuencing factors on methodological approaches are: cognitive impairment; social limitations; the research-participant relationship; the presence of carers or support staff; time; ethical considerations; and coresearchers with ID. Rationale for selecting particular methodologies should include a consideration of how participants cope with such methods. Conclusions: Threats to reliability and validity must be addressed. Unconventional data collection methods may be needed in order to make research accessible for people with ID. Evaluative research is needed into the effectiveness of different research methods and tools. The way data can be collected from people with ID not only has relevance for researchers across disciplines, but also for clinical practitioners who need to elicit personal data from patients with ID.

Symposium: Position of people with intellectual disability in studies and research A collaborative group model as a method of inclusive research C. Bigby (c.bigby@latrobe.edu.au)*, P. Frawley & P. Ramcharan *LaTrobe University,Victoria, Australia Aim: Increasingly funding bodies both in Australia and the UK require research on issues that affect the lives of people with intellectual disability to be inclusive. But debates continue about the nature and benets of inclusive research, and it has become an umbrella term that encompasses a broad spectrum of approaches. Method: Data on the processes of research and collaboration were collected, during a six-year study of the history of self-advocacy that involved three academics and ve self-advocates working together. Field notes, interview and meeting transcripts were analysed. Results: A grounded theory model of a collaborative group method of inclusive research was developed. It has six components: values including academic rigor; shared and distinct purposes of participants; shared involvement and distinctive contributions; creation of accessible working space and scaffolding for inclusion; use of non-accessible space; and adaptation of research processes, practicalities and leadership. Conclusions: This method of inclusive research has resulted in better quality research than either academics or self-advocates could have achieved alone, and had multiple outcomes. The development of this model contributes to the theoretical development of inclusive research.
Symposium: Empowerment and rights fulllment Measurement of persons with intellectual disabilities rights: International development of a scale A. S. Aznar (info@itineris.org.ar)* & D. Gonzlez Castan *ITINERIS Foundation, Argentina Aim: To produce a tool to evaluate rights fulllment among persons with intellectual disabilities (ID). Method: The authors are members of an Argentinean ITINERIS Foundation, which provides training and deploys research for the development of theoretical frameworks culturally appropriate to Latin America. Thirty-two (32) international experts worked on a virtual delphi group to assess a set of indicators based on the Declaration of Montreal. Results: The ITINERIS Scale of Rights of persons with Intellectual Disabilities (ISRID) was developed and subsequently rened by a group of persons with ID who are experts in translation to simple Spanish. ISRID can be self-administered or completed with little help. Spanish, English and Portuguese versions were produced. Its 30 indicators correlate almost perfectly with the UN Convention articles. ISRID behaved logically and sensitively in the ve pilot groups that tested it (Cronbach alpha > 0.9). Age, family support, segregated services and IQ are factors that affect the fulllment of rights. Conclusions: ISRID allows the evaluation of rights from the UN Convention in a quick and simple way in the words of the persons affected. Self-advocates can benet from its use, without intermediaries, to defend their rights. Participation in empowerment evaluation and its impact on self-determination
People with ID as interviewers and co-researchers: Experiences and reection H. Lieshout (h.vanlieshout@nivel.nl)* *Netherlands Institute for Health Services Research Aim: To share the experience of working with people with intellectual disabilities (ID) as interviewers in a qualitative study about community participation of people with ID. We reect on two perspectives: the interviewers and the researchers. Method: Eighteen people with ID were interviewed by their peers about participation. All interviews were transcribed verbatim and results and experiences were discussed in a focus group with the interviewers and workers of a self-advocacy group. Results: Using trained peer interviewers can help people with ID in sharing meaningful experiences and can improve the quality of research. The interviewers provided a safe environment and were likely to understand or to be understood by the respondents, as they share common experiences. In addition, rst results show that the interviewers have personally benetted from participation in research in terms of increased self-condence, improved communication skills and expanded friendships. Interviewers with ID are able to perform well under the right conditions (e.g. opportunities to practice, clear information, and an adequate and exible approach). Conclusions: Actively involving people with ID in research, armed with good training, adds value to the richness and relevance of research ndings. It also increases the visibility and empowerment of persons with ID.
E. Garcia Iriarte (iriartee@tcd.ie)* *National Institute for Intellectual Disability, Trinity College Dublin, Ireland Aim: Empowerment evaluation is expected to result in increased selfdetermination of evaluation participants (Fetterman, 1996; 2001). However, there is scarce empirical analysis of the impact that participation in empowerment evaluation has on self-determination of people with intellectual disabilities (ID). Therefore, this paper aims to provide an empirical account of the relationship between participation of people with ID in empowerment evaluation of programmes and self-determination outcomes. Method: A pre-post non-equivalent groups design was used to assess self-determination of people with ID through mixed-methods. A total of 19 people (nTarget group = 9; nComparative group = 10) participated in semi-structured interviews, focus groups, and completed the ARCs Self-Determination Scale. Target group participants were supported to evaluate their individual service plans. Results: In the post-test, target group participants showed more specic self-knowledge and self-awareness of preferences, more specic sense of accomplishment, and were able to identify resources to accomplish their goals. Organisational factors and lack of resources, however, prevented adults with ID from making decisions about their service plans based on the evaluation results. Conclusions: Individual capacity to conduct programme evaluation inuences aspects of self-determination. However, organisational factors and resources become critical in the use of evaluation results and its impact on self-determination. Rights fulllment among persons with intellectual disabilities in Latin America A. S. Aznar (info@itineris.org.ar)*, D. Gonzlez Castan & G. Olate *ITINERIS Foundation, COANIL Foundation, Argentina Aim: This purpose of this study was to obtain a prole of rights fulllment in persons with intellectual disabilities (ID) at a country level and compare it with a sample from the general population. Method: ITINERIS Foundation, an NGO devoted to research and training in South America, used its own ITINERIS Scale of Rights of persons with Intellectual Disabilities (ISRID) to evaluate 705 adults with ID in Chile, in a joint effort with members of COANIL Foundation. Their results were compared with a sample of 524 college students, paired by age, gender and city of residence with the original sample. Results: The average situation of both groups was very similar. Persons with ID reach a level of fulllment of their rights greater than their non-disabled peers in matters related to health services, education and social protection, but inferior in matters related to selfdetermination. Conclusions: Persons with ID of both genders and all ages had a fulllment of their rights comparable with college students as a result of the system of supports provided by an organisation.

Symposium: Participation and decision-making Participation in participation talks R. Symalla (rositta.symalla@t-online.de)*, G. Dobslaw & W. Nothdurft *BethelRegional, Bielefeld, Germany Aim: In order to promote participation and self-determination for all people regardless of their disability participation talks for individuals with disability are obligatory in Germany. The objective of these talks is to determine concrete participation goals as well as a rehabilitation plan based on the needs and wishes of the person with a disability. But is selfdetermination of the users really promoted in these talks? Method: In a qualitative study, participation talks with individuals with psychiatric illness, intellectual disability and/or autism spectrum disorders have been recorded and analysed based on a multimodal analysis approach. The focus was to determine the kind and amount of participation during the interaction. The analysis of the interaction has been conducted according to the principles of grounded theory. Results: The results of the research show that the behaviour of the professionals and their way of including individuals with disabilities into the conversation has an impact on process and outcome of the participation talk. Conclusions: To promote self-determination it is not sufcient to offer a certain organizational framework; the professionals also need to be aware of their own communicational behaviour and have to be trained. Improving access to health care through community engagement C. Drum (charles.drum@unh.edu)* *Institute on Disability, University of New Hampshire, US Aim: In the United States (US), people with disabilities, including intellectual and developmental disabilities, report many barriers to accessing health care. This presentation will describe the results of a research project using community engagement techniques to increase access to health care in the US for people with disabilities. Method: An embedded multi-site case study approach was used to access the efcacy of the Community Engagement Initiative to identify, prioritize, and resolve health care access barriers. Data was collected at the individual, environmental, and systems level. Results: Four communities in the US identied barriers in facility access and services, transportation, and provider attitudes and communication. Across the sites, 23 out of 38 prioritized barriers (60%) were resolved within nine months. Signicant results were reported in changing health care clinic environments. No signicant results were produced in individual attitudes. Conclusions: The Community Engagement Initiative is a promising practice for addressing health care access barriers. Values and ethics in architecture and technology: A case study L. J. Helwig Nazarowa (lydia@helwignazarowa.eu)* & R. Hoogma *Siza Dorp Groep, Arnhem, The Netherlands Aim: To explore the participation of people with physical disabilities and traumatic brain injury (TBI) in architectural and technological design. Method: Action research. Results: Current measurement of quality of life in practice and policy in The Netherlands pay little or no attention to the quality of infrastructure. This paper reports on a project that seeks to combine new principles of urban architecture with a technologically and ecologically innovative design in the renovation of residential facilities for people with physical disabilities and TBI. The project seeks to include the future occupants of these facilities in the research and development process. Participation of service users in the entire process aims at lowering levels of dependency on direct support staff. The adequacy of technological solutions is assessed on the basis of user experience and preference. Underlying this project is a concept of the virtual community that builds on advanced principles of quality of services. These include ethical perspectives on creating new living environments. Conclusions: Ethical principles of service provision when applied to the process of research and development leads to the transformation of service users into participants in shared intellectual ownership of new living environments. Symposium: Empowerment
Capability approach and the inclusion of persons with intellectual disability H. Meininger (h.p.meininger@planet.nl)* *VU University Amsterdam / s Heeren Loo, The Netherlands Aim: To evaluate and discuss the relevance of Martha Nussbaums capability approach for the inclusion of persons with intellectual disabilities. Method: Review and analysis of relevant literature. Results: Reknowned authors in the eld of intellectual disability research have referred to Matha Nussbaums capability approach as an adequate and inspiring moral framework for care, support and inclusion of people with (profound) intellectual disabilities. An outline of the capability approach is presented, its background in a Rawlsian theory of justice are explained and critical voices from the perspective of persons with ID are explored. In the dominant discourse on (support of) persons with ID, independence and individual responsibility are key values. Inclusion and rehabilitation are key goals that can and must be realized through social interventions. Reference to the capability approach by authors in the eld of intellectual disability seems to amount to an attempt to stretch the dominant social and scientical discourse in such a way that it may encompass persons with (profound) intellectual disabilities in a way that does justice to them. Conclusions: It is explained why this attempt must fail in the end. Some alternatives approaches are presented. Knowledge Transfer and Exchange (KTE) as a source of empowerment I. Brown (ivan.brown@utoronto.ca)* *Faculty of Social Work, University of Toronto, Ontario, Canada Aim: Knowledge Transfer and Exchange (KTE) is a topic that has burst onto the academic scene, but has not been explored to any great extent in the eld of intellectual disabilities. This presentation provides a conceptual model of KTE, and suggests methods of putting it into practice in ways that empower individuals with disabilities and their families. Method: The author and colleagues developed a conceptual model of KTE that is applicable to use in the social sciences. Focus groups in various countries were used to introduce the model and solicit core ideas for how to use it in practice. Results: The model was deemed to be useful by focus group participants, who suggested numerous methods of application as well as specic products that would be empowering to individuals with disabilities and members of their families. Conclusions: The KTE model and its suggested applications provide a solid base for pilot testing the applications in practice. Measuring our success in promoting choices V. Cobigo (virginie.cobigo@gmail.com)* *School of Nursing Sciences, University of East Anglia, England Aim: Choice is widely recognized to be a right and entitlement. Individuals with intellectual disabilities (ID) must be supported in making choices that affect their dignity and quality of life. However, to go beyond this accepted principle and improve services and policies requires an operational denition of choice which could guide practices, and the evaluation of their success in promoting choice. Method: Scoping review of literature published between 1991 and 2011 on choice and choice making. Results: Forty-three articles met the selection criteria, from which 25 specically addressed issues on choice in persons with ID. There are inconsistencies and contradictions in available denitions of choice. Key practices supporting choice were identied and critically appraised. Their implications for service and policy evaluation were identied. Conclusions: Supports and policies for persons with ID aim to promote their right to make choices and inuence their life. However, a number of disagreements regarding the denition of choice and its experience for persons with ID still exist. It is crucial to work toward a consensual and operational denition of choice to effectively design and measure services and policies.

Symposium: Inclusive research I Finding out about the way of life M. Eardley (chloe@peoplerstcumbria.co.uk)* & C. Brownlee-Chapman *Carlisle People First Research Team, Cumbria, England Aim: After living in Dovenby, a long-stay hospital in Cumbria, UK for 12 years, I developed an interest in peoples life history. I decided I would like to write a book. I received a grant to help me, which I obtained myself. When I spoke about my plans, some people who have the label of learning difculty were very interested and wanted to be involved in sharing their stories. Method: I researched peoples lives using a life history approach and I have written a book about my ndings: The Way of Life. Results: Having a learning difculty myself, I am all too aware of the stress that we can have from people calling us names and not treating us with respect, and I have overcome many difculties over the years (one being a disability hate crime). There are similar stories from the other people interviewed, yet we are all very different too. Conclusions: It is important to share my story to raise awareness of issues faced by people with learning difculties. Professionals need to know how sometimes they have destroyed peoples lives. The history of People First project L.Townson (chloe@peoplerstcumbria.co.uk)*, M. Eardley, E. Harkness, J. Dias, R. Chapman & C. Brownlee-Chapman *Carlisle People First Research Team, Cumbria, England Aim: People First groups started up in the UK in 1984 after some people went to a self-advocacy conference in America. Our local group has been running since 1990 and has seen a lot of changes over the years. From looking at the history of our own group we decided to look at the history of other People First groups in the UK. Method: We visited a number of People First groups across the UK that had been working together for over ten years and interviewed members. We also held a national workshop about the history of self-advocacy groups, which we designed ourselves. Results: We found that people shared a lot of the same problems in their groups. These were mainly about funding and getting good support. We discovered how important it was to do things for ourselves. Each group went away to trace their own history. Conclusions: Tracing the history of groups helps them to gain a wider understanding of issues in the advocacy movement. This is especially important at a time of global recession and cuts in funding. Research about self-advocacy and autism E. Harkness (chloe@peoplerstcumbria.co.uk)*, L.Townson, J. Dias, M. Eardley, C. Brownlee-Chapman & R. Chapman *Carlisle People First Research Team, Cumbria, England Aim: The Carlisle People First Research Team take an inclusive approach to research. In this paper we present a project on Self Advocacy and Autism where we explored whether or not people with the label of autism had good access to advocacy in the northwest of England. Method: We used lots of different and accessible methods including focus groups, interviews and observations. Results: We found out that people suffered from issues such as late diagnosis, being given the wrong services, being passed around from service to service and being told that they did not meet the eligibility criteria for certain services. It was hard for people to access advocacy but they were really keen to nd out more and join forces with other advocacy organizations. Conclusions: This project came from the interest of the members of the research team, and is based on the groups values and principles. We think its important to tell people how we do our research, as well as tell them about our research.
Symposium: Inclusive research II Keeping wartime memories alive J. Dias (chloe@peoplerstcumbria.co.uk)*, C. Brownlee- Chapman, L.Townson, E. Harkness, M. Eardley & R. Chapman *Carlisle People First Research Team, Cumbria, England Aim: This project set out to gain the oral histories of people with learning difculties who lived during the war years in Cumbria. We wanted to nd out what their experiences had been and how their lives had been changed by the impact of war. Method: We used an oral history approach to hear from people with learning difculties about their memories and experiences of World War Two. Co-researchers with and without the label of learning difculties were employed on the project. Results: Some peoples lives had been substantially changed by the war but for others their lives had continued unaffected. We had some unexpected ndings around the nature of false or given memories and we started to question our own approach towards inclusion. Conclusions: Oral history interviews can be a very accessible method of research. We also found a number of other ways to make methods and analysis more accessible to the team.
The roles and values of involving people with ID as co-researchers in a participatory project M. Herps (m.herps@vilans.nl)*, W. Buntinx, I.Tuffrey-Wijne & L. Curfs *Vilans and Gouverneur Kremers Centre, Maastricht University, Utrecht, The Netherlands Aim: To examine the roles and values of people with intellectual disabilities as co-researchers and the role of researchers without intellectual disabilities (ID). Method: A participatory research project was set up in which people with ID were involved in all phases of the study. Two people with ID participated in the research group as co-researchers. A brainstorming session was held with ve people with ID, and 68 people with ID were interviewed. Results: The study shows that people with ID can full a meaningful role in preparing a research study, executing the study, analyzing the data, and interpreting the results. However, there remain differences between trained, academic researchers and people with ID as researchers who have no academic training or experience. Conclusions: Involving people with ID as co-researchers comes both with specic advantages as well as difculties. Their unique contribution is their ability to empathize with the researched population, to improve the understanding of data, and to enhance the implementation of results. In a collaborative project, it is important to set expectations and to clarify roles.

Symposium: Immigrant and indigenous minority languages I & II Immigrant and indigenous minority languages: Discussing access by individuals with DD to their mother tongue J. Scherba de Valenzuela (devalenz@unm.edu)*, E. K. Raining-Bird, C. Alpers, M. Beauchamp, S. Bryson, P. Cleave, S. R. Copeland, A. MacLeod & B. Squire *Special Education, University of New Mexico, New Mexico, United States of Amercia The aim of this symposium is to discuss issues of access by individuals with developmental disabilities (DD) from language minority backgrounds to development of, and education in, their mother tongue. These backgrounds include both individuals whose families have immigrated within one to two generations and retain a language other than that spoken by the dominant community, as well as those from long-standing distinct language communities, such as indigenous minority communities (e.g. First Nations in Canada). The panel includes both researchers and practitioners, from Canada and the U.S., who are expert in this area and come from diverse, yet related elds, such as Speech-Language Pathology, Special Education, and Educational Psychology. The facilitator will open the symposium with a brief overview of key denitions, to set the context and facilitate communication. After brief introductions of the participants, the panel members will discuss these questions: What do we know about development of bilingualism among individuals with DD? In your experience, what barriers exist to developing bilingualism among individuals with DD? What are your priorities for research related to bilingualism and DD? Audience members will be invited to participate in the discussion, moderated by the symposium chair. Symposium: Abuse
Community-based participatory research to address experiences and consequences of violence victimization K. McDonald (kemcdona@syr.edu)*, E. Stacks & R. Hughes *Syracuse University, New York, US Aim: The Partnering with Persons with Developmental Disabilities to Address Violence Project aims to identify risk factors for, and health outcomes of, interpersonal violence (IPV) in the lives of persons with developmental disabilities (DD). Method: Using community-based participatory research (CBPR), academic researchers and persons with DD have collaborated to design and carry out computer-based surveys with 400 adults with DD. In all three project years, external evaluators are studying the use of CBPR. Results: We have created understandable and accessible research materials, are conducting surveys with 400 participants, and learning about ways to use CBPR successfully. Conclusions: It is possible and important to include persons with DD in violence research. Looking into abuse: Research by people with learning disabilities J. Howarth (jhowarth@glam.ac.uk)*, M. Melsome & R. Pugh *University of Glamorgan,Wales, UK Aim: There is much research around the abuse of people with learning disabilities, the majority of it concerned with professionals views and policy. This study aims to nd out what people with learning disabilities understand by abuse, what their views are of abuse, the help and support needed by them to keep safe, and the best ways to support people if they are abused. The research team includes 3 people with learning disabilities as researchers. Method: A Research Advisory Group, including people with learning disabilities (50% of group), parents, and professionals, supported development of the research. A questionnaire was sent out to all People First groups in Wales. A 3-day residential was also held, which was attended by 48 people with learning disabilities. During this event data was gathered via focus groups, individual interviews and by completion of the questionnaire. Results: Data analysis was a collaborative activity: themes arising from the focus groups and individual interviews will be reported in this paper. Conclusions: People with learning disabilities can be active partners in the development of research which concerns their lives. The ndings of this research will be used to inform development of the New Pathways counselling service in South Wales. Increasing safety and empowerment to prevent abuse M. Hammond (Marilyn.Hammond@usu.edu)* & S. Pavithran *Utah State University, Utah, US Aim: This presentation will discuss a project between the Utah Developmental Disabilities Council, the Utah Disability Law Center and the Center for Persons with Disabilities at Utah State University to prevent abuse, violence and neglect of people with developmental disabilities in Utah. Method: This will be accomplished by increasing the safety, knowledge, skills, connections and resources of individuals with developmental disabilities through comprehensive collaborative training. A needs/knowledge assessment has currently been developed and is being administered with People First groups of individuals with developmental disabilities. Results and Conclusions: The assessments will be analyzed and used to inform the training. Training will be collaboratively developed, reviewed by content experts, revised, and delivered onsite to people with developmental disabilities statewide, and online to support providers statewide. Other training audiences in future years will include group home staff and administrators, support providers, parents, shelters, and rst responders. A project website will be developed with resources, information, links and training modules. In addition to the three agencies partnering on this project, individuals with developmental disabilities, the Utah Coalition Against Sexual Assault, and the Utah Domestic Violence Coalition will collaboratively develop, deliver, evaluate, and revise all trainings.

Symposium: Involvement in service planning Implications of personal budgeting in services for people with disabilities Making of full citizenship? S. Eriksson (susan.eriksson@kvl.)* *The Finnish Association on Intellectual and Developmental Disabilities, Center for Research and Development Aim: Aim of the presentation is to analyze the possibilities and consequences of personal budgeting in the service system for people with disabilities in Finland. Method: The Finnish process of personal budgeting involves a development project in the units of municipal services for people with disabilities in ve (5) counties. The principle of person-centred lifeplanning is important in the process, where the service users are trained to express their needs and plan their everyday lives in meaningful ways. The project also includes action research. Research data contains recorded training sessions and conversations about the aims and requirements of personal budgeting conducted with the service users and professionals involved in the experiment. Results: Personal budgeting changes the social position of a service user through increasing possibilities to make decisions concerning services. Personal budgeting has an impact on the power relations between service users and professionals through those processes of empowerment. Conclusions: Person-centred practices contribute changes in professional ethos of social work, where specic individual-based approaches are in the process of development. Individual support planning:Views and experiences of people with intellectual disabilities M. Herps (m.herps@vilans.nl)*, W. Buntinx & L. Curfs *Maastricht University, Utrecht, The Netherlands Aim: The aim of the study was to examine the experiences of people with intellectual disabilities (ID) in the Netherlands concerning their involvement in developing, implementing and evaluating their individualized support plan (ISP). We studied their perceived outcomes of ISP and suggestions for improvement. Method: Semi-structured interviews were conducted with 61 people with ID receiving services from 23 different organizations nationwide. Results: Results indicated that people with ID acknowledge the importance of having an ISP. In the process of developing, implementing and evaluating their ISP, people with ID are seldom involved in a way that meets their needs. This is mostly due to lack of understanding of the purpose of ISP, the process, the roles of people involved, and the content of the ISP. Conclusions: People with ID are not in control over the process, format and content of individualized support planning. It often seems that involvement is more symbolic than it is functional. The ndings of this study highlight the complexity of involving people with ID in ISP. This dynamic process is not only affected by participants intellectual and verbal ability, but also by factors such as the formal requirements and rules from support organizations and their bureaucratic environment. Opportunities and barriers for self-determination in a trans-institutional care setting in Sweden L. Berlin Hallrup (leena.berlin-hallrup@lnu.se)* *Department of Health and Caring Sciences, Linnaeus University,Vxj, Sweden Aim: The study aimed to describe the meaning of self-determination from the perspective of adults with intellectual disabilities living in a transinstitutional care setting in Sweden. Method: An ethnographic approach was used including eld work in a trans-institutional care setting which provides accommodation, schooling, daily occupation and socialization on-site for adults with intellectual disabilities (n = 77). The data collection involved participant observation and in-depth interviews with 12 adults with intellectual disabilities. Results: The results show that adults with intellectual disabilities experience self-determination in having a trusting relationship with a so-called contact-person (i.e., a staff member which showed special attention to individual needs and preferences over time). When such personnel suddenly quit their job, it was felt by the residents as a personal loss of the possibility to exert self-determination. Conclusions: The study contributes to understand the importance of building trusting relationships between residents and staff in a trans-institutional care setting. These relationships were signicant for residents sense of having control and self-determination in everyday life. Thus, it is important that various care settings for adults with intellectual disabilities succeed in attracting and retaining good staff.
Symposium: Health, wellness and tness for persons with intellectual disability I want to get into a relationship, not go to Gaol! R. A. Hopkins (robhopkins100@gmail.com)*, G. Minogue & J. McGrath *Inclusive Research Network, N.I.I.D., Trinity College Dublin, Ireland Aim: How inclusive research into relationships can lead to a challenge to prohibitive legislation. Method: Clare Inclusive Research Group researchers, as members of the Inclusive Research Network (IRN) (an afliation of researchers with intellectual disabilities, their supporters, and academic researchers), conducted the rst inclusive research in Ireland using focus groups to gather together the views of people with a learning disability towards relationships. We published the ndings in the Supports and Relationships Study (2010). Results: We used Forum Theatre to generate interactive responses to the topic. The researchers came to the attention of national radio news media and were called upon to make representations opposing the Criminal Law Sexual Offences Act (1993) which specically prohibits sexual intimacy for people with an learning disability. Conclusions: In March 2011, members were asked to make representations to the Law Reform Commission. In November 2011, the Commission aligned itself with the groups lobbying position by calling for the law to be repealed and replaced. Relationship education by people with an intellectual disability: An Australian peer educator model P. Frawley (p.frawley@latrobe.edu.au)* & A. OShea *LaTrobe University, Melbourne, Australia Aim: This study aimed to trial a peer-led abuse prevention program for people with an intellectual disability. There is little knowledge about effective approaches to abuse-prevention education and few examples of peer education by people with an intellectual disability. Method: Twenty people with an intellectual disability and twenty professionals were trained using this model from 2009 to 2011. Observation, interview and focus group data gathered pre-, during, and post-training was thematically analysed to develop an understanding of this model in practice. Results: This study found that people with an intellectual disability bring unique skills and expertise to this role. People reported that in contrast to nondisabled educators, they were role models to their peers and were able to stand in their shoes. Being a peer educator was an important way to take a stand against violence and abuse. These ndings were contrary to the dominant view held by professionals that this role would be too difcult for people with an intellectual disability. Conclusions: The study expanded on current ecological models of abuse prevention. It placed people with an intellectual disability at the centre of prevention education and suggested there is a place for peer education in relationship and sexuality programs. Processes underlying positive relationships for adults with severe intellectual disability H. Johnson (h.johnson@latrobe.edu.au)*, C. Bigby, J. Douglas & T. Iacono *La trobe University, Australia Aim: This presentation focuses on describing the processes that occur between people with severe intellectual disability who are symbolic but non-linguistic communicators and those with whom they have positive relationships. Method: Participants included six participants with intellectual disability and limited communication and those with whom they had positive relationships. The main body of data was collected from participant observation and interviews. The data were analysed using the grounded theory method. Results: Five core aspects were revealed. People who had positive relationships experienced sharing the moment while getting to know the person and recognising the individual. The next process of connecting incorporated emotional and practical support, and adjusting communication. The outcome of these processes was encapsulated by feeling good. Feeling good encouraged people in positive relationships to share the message and inform others about the central participants’ activities and personalities. Conclusion: The implications from the relationship model suggests developing relationships may be the rst step in increasing social interaction for adults with intellectual disability. The model provides evidence for developing relationship training and may be applicable to people who support a broader range of people with disabilities.

Symposium: Self-advocacy Picture this: Self-advocates use photography to visually articulate issues important to their lives A. Fudge Schormans (fschorm@mcmaster.ca)* *McMaster University, Hamilton, Ontario, Canada Aim: To present a project completed by a group of self-advocates in which they used photography to visually articulate issues important to their lives. This project built upon an earlier project in which the self-advocates critiqued and transformed existing public photographic images of people with intellectual disabilities. Method: Working as co-researchers with the author and a consultant photographer, six self-advocates engaged with different photographic methods (e.g., photo-theatre, photo-documentary, photovoice, etc.) to visually present their insights and opinions on issues they deemed important to living with intellectual disabilities. As coresearchers, the self-advocates were involved in all aspects of the research project. Results: Self-advocates identied four interconnected life issues (i.e., barriers to parenting, poverty, belonging, and restricted employment) and chose different photographic techniques to articulate these issues and the connections between them. An exhibit of the work was mounted for a non-disabled audience. The self-advocates also engaged the audience in discussion of the work and the issues represented. Conclusions: The selfadvocates demonstrated much insight, creativity, and understanding of the necessity for self-representation and the power inherent in such. Through their engagement in the research process, the self-advocates also further developed their skills in research. Perspectives of self-advocates on lm representations of intellectual disability R. Renwick (r.renwick@utoronto.ca)* & A. Fudge Schormans *Quality of Life Research Unit, University of Toronto, Canada Aim: Despite recognition of the powerful inuence of lm representations on social understandings of marginalized groups (e.g., people with psychiatric and physical disabilities), the literature on representations of people with intellectual disabilities (ID) is sparse. Further, what people with ID themselves think of these representations is unknown. This participatory research examined messages disseminated by contemporary lm and to what extent these reected the lives and experiences of adults with ID themselves, from their own perspectives. Method: Co-researchers with ID (three self-advocates), two researchers, and two students worked together in all stages of this participatory research. They jointly selected and repeatedly viewed ve contemporary lms to create a framework for systematic critical analysis of portrayals of adults with ID. Results: Several themes emerging from this analysis were critiqued by the self-advocate co-researchers and compared with their own experiences. Challenges (e.g., ongoing attention to ensuring all researchers had a common understanding of the research process and to whose story is being told) and benets (e.g., self-advocates developed research skills; new knowledge about inclusive methods) of this participatory approach are discussed. Conclusions: How self-advocates perspectives on helpful and damaging messages about people with ID can inform service practice and future research is discussed.
Symposium: Policy and human rights Independent and vulnerable? Tensions and contradictions in UK policy and practice associated with intellectual disability R. Fyson (Rachel.Fyson@nottingham.ac.uk)* *University of Nottingham, England, UK Aim: To explore the tensions and contradictions within current UK social policies for people with intellectual disabilities, which simultaneously promote a personalisation agenda (based on concepts of rights, choice, independence and social inclusion) and an adult safeguarding agenda which presents the same individuals as vulnerable. Method: The study comprised 12 in-depth, semi-structured interviews across six English local authorities. In each location one social worker from an adult intellectual disability team and one adult safeguarding ofcer was interviewed. Eighteen (18) hours of data were generated, transcribed in full, coded using Nvivo software and subjected to thematic analysis. Results: Emergent themes included: (1) tensions between independence and safeguarding; (2) the particular vulnerabilities of people with mild intellectual disabilities who receive limited support; (3) loneliness as a social consequence of personalised services; and (4) the complexities of safeguarding within a context of service user choice. Conclusions: The prevailing hegemony amongst many UK policy makers, which promotes choice and independence as inevitably positive, is challenged by the experiences and concerns of frontline professionals. There is need for a more nuanced approach to the implementation of the personalisation agenda, and greater recognition of the diverse needs of the heterogeneous population of people with intellectual disabilities. What is the added value of the UNCRPD to people with learning disabilities in Scotland? C.Trew (chloe.t@scld.co.uk)* *Scottish Consortium for Learning Disability (SCLD), Scotland Aim: Scotland is bound by the commitments contained in the United Nations Convention on the Rights of Persons with Disabilities. However, the UNCRPD is not enforceable under domestic law in Scotland. Furthermore, people with learning disabilities in Scotland already enjoy signicant rights protection. Therefore, this paper seeks to determine what added value the UNCRPD brings. Method: A review of the literature and case law at domestic and European level was undertaken. Results: Despite some limitations, the UNCRPD provides a range of benets to people with learning disabilities in Scotland. Conclusions: Softer, symbolic benets of the UNCRPD include recognition both of the social model of disability and of people with learning disabilities as active rights bearers. Their involvement in the UNCRPDs drafting represents participation writ large. Harder benets include increased human rights protection internationally and a move towards economic, social and cultural rights. Although non-enforceable domestically, the Convention is likely to be used as an interpretative tool by Scottish Courts and it has already found expression in the decisions of the European Court of Human Rights. Together, all these elements are likely to increase the respect for the human rights of people with learning disabilities in Scotland. Institutionalized languages L. J. Helwig Nazarowa (lydia@helwignazarowa.eu)* *Siza Dorp Groep, Arnhem, The Netherlands
Symposium: Self-advocacy across the United States Self-advocacy across the United States H. Spears (hspears@aucd.org)*, Liz Weintraub & Dawn Rudolph *Association of University Centers on Disabilities (AUCD), Silver Spring, Maryland, US Aim: A series of 9 regional self-advocacy summits is taking place across the entire United States to strengthen and enhance self-advocacy efforts both in individual states and nationally. Method: Beginning in the Spring of 2011, teams of 912 self-advocates and other professionals from each state and territory attended a summit in their region to create goals for their state as well as to generate recommendations for national policy and action items. Results and Conclusions: This presentation of the Self-Advocacy Summits will report outcomes, purpose, the collaborative process between self-advocates and other professionals, preparation, accessibility, and partnership in supporting self-advocacy at state and national levels for the future of self-advocacy in the United States.
Aim: A critique of institutionalized languages. Method: Philosophical analysis. Results: Focusing on the formal language of human services enables a critique of a particular aspect of institutionalization that receives little attention. Institutionalization is usually understood as indicating a traditional, segregated type of service organization. However, the language of contemporary services betrays an aspect of institutionalization that is relatively independent of the way services are organized. People with disabilities nd themselves in formalized relationships, identifying them as clients, customers, and served by caregivers, direct support staff, people who operate on the contractual basis of personal support plans, and so on. Much of this institutionalized language is reinforced by managerial instruments such as data on client satisfaction and other quality indicators. As a consequence, the individual persons who are supposed to be served disappear in this language as the organizations other. Even though the organization aims at their well-being, the formal language it deploys to organize itself indicates a great difculty in recognizing their individuality. Conclusions: The dissolution of insitutionalized services and the creation of new alternative forms have not succeeded in overcoming the deindividualizing language that continues to dominate the formal world of human services.

Symposium: Cultural context and interpretations of ID Telling differences: Cultural archetypes of intellectual disabilities in myths and legends N. Grove (DrNicolaGrove@fastmail.net)* *Openstorytellers Ltd, Black Swan Arts, England, UK Aim: This presentation describes the development of an archive of stories featuring characters with intellectual disabilities from world tales. The aim is to provide people with disabilities, their families, and those who work with them, with stories that they can use to explore their own histories, challenge and stereotypes, consider the role of people with intellectual disabilities in different societies, and construct strong and empowered identities. Method: A template is used to structure the collection and documentation of the stories, which identies: the nature of the story, roles played by people with disabilities, and the cultural and personal relevance of the story. Stories have been collected from Japan, South Africa, Europe, North and South America. Results: Common themes have emerged, indicating the prevalence of certain archetypes. There are also marked differences between cultures. Unifying themes include resistance to oppression and challenges to preconceptions. These can be used in workshops to help people think about their lives. The presentation will feature a short example of the stories in action. Conclusions: Legends offer a rich source for exploring constructs of disability, and empowering people to take charge of their own histories and becoming stakeholders in local, national and world culture.
Symposium: Cultural context and interpretations of ID (continued) Lost in translation Communicating disability in a multi-ethnic society B. Berg (berit.berg@svt.ntnu.no)* *Department of Social Work and Health Science, Norwegian University of Science and Technology, Norway Aim: To gather more knowledge about challenges for immigrant families, and to develop strategies for better collaboration between the service system and those families. Families from non-western countries are for various reasons seldom included in research on disability, and there are few studies about families with double minority backgrounds. In this paper we will focus on the communication process. How is disability explained and understood? To what extent are professional interpreters involved in the information process and in the daily interaction? In what ways are interpreters qualied to translate and interpret words, concepts, and understandings based on western understandings to migrants with non-western backgrounds? Method: The study involved a literature review, in depth interviews with parents and service providers, focus groups with professionals, and observations of children in daycare and school. Results and Conclusions: A dominant understanding among professionals has been that culture differences is a major challenge, but this understanding has only limited support in the literature. Our study indicates that communication problems and poverty explain more than culture differences and religion, and are key factors in better collaboration between families and service providers. Disability and impact: Context and culture in the collection of disability data J. Porter (j.porter@bath.ac.uk)*, H. Daniels, J. Georgeson & A. Feiler *University of Bath Aim: This presentation draws on data collected as part of two nationwide studies of disability data collection for childrens services to illustrate the cultural and contextual nature of disability. Operationalizing a legal denition that advances equality of opportunity through removing or minimising disadvantage places impact on the person as a core element of the criteria for disability. This foregrounds the subjective experiences of the child and their family. Method: Data provided by parents of 5,000 children is analysed to examine the complex relationship between diagnosis, need and impact. Results: The analysis indicates that the impact of a health condition and/or impairment for a child with multiple needs can only be understood within the context of the cultural setting of the family and community and the barriers and supports experienced in the provision that is made available by the state, the family and the community. Conclusion: This draws attention to the need to collect data based around multiple indicators of disability including qualitative data on the perceptions of supports and barriers to participation in school, family and community activities. The data challenges the notion of producing standardised measures where identication lies solely in the hands of professionals.
What the Dickens? Further studies of children with intelledtual disabilities in mid-nineteenth century Britain D. Stewart (d.stewart@oakeld.nottingham.sch.uk)* *Oak Field School and Sports College, Nottingham, UK Aim: Charles Dickens supported the education for pupils with ID through his Household Words. He describes children with disabilities in his novels, but what was the reality for these children? This study continues the research on the lives of children with intellectual disability in mid nineteenth century Britain, based on earlier study of the children at the school in Bath, but also looking at a wider range of pupils in other mid 19th century educational institutions, and with greater detail on their subsequent lives at home or in a series of workhouses and asylums. Method: Using original material such as case notes, genealogical study and contact with families, the author has been able to plot the lives of young people with intellectual disability. Results: Parental or family support played a large part in determining where a child might be sent and where they might go on after reaching adulthood. Conclusions: By close study it has been possible to give an identity to these early scholars, placing them in a context of their families and the wider society. Evidence indicates that some children might be sent to a range of institutions. The methods can be replicated for similar groups.

Symposium: Unthinking intelligence and intelletual disability Unthinking intelligence and intellectual disability H. Reinders (j.s.reinders@vu.nl)*,T. Stainton, C. Goodey & M. Simpson *Faculty of Theology,VU University Amsterdam, The Netherlands Aim: To discuss the status of intelligence as the main indicator of intellectual disabilities (ID). Method: Round table discussion. Results: The continuing debate on intelligence as the main indicator of ID raises the question as to its usefulness for determining eligibility issues in policy and practice. While various non-essentialist approaches have contributed to undermining the concept of ID on the level of theory, on the level of policy and practice it cannot be easily unthought. This regards particularly the use of ID as a special social category to support claims to equality and social inclusion. The symposium discusses the tension between the need for support of vulnerable people and the claim to the fundamental equality of people with ID. Conclusions: The problems related to intelligence and IQ as indicator suggest the need for a different conceptualization of ID. Identifying people with ID C. Goodey (cfgoodey@yahoo.co.uk)* *London, England, UK Aim: To discuss the concept of intelligence as indicator for ID. Method: Historical analysis. Results: The assessment of intelligence confuses two incompatible thought-processes. One is a judgment (of performances x, y etc.) that is veriable; the other is a sorting of terms rooted in a historically conditioned, and inherently unstable, consensus (performance x comes under the consensual heading of intelligence, performance y does not). Without this confusion, we would not have a concept of intelligence at all, or therefore of disability. All human beings are interdependent and therefore need support in some things: mostly, this is not assessed. It is therefore difcult to see what assessment indicators do other than identify certain people as members of an out-group. Conclusions: Support, not assessment, is the crucial ingredient in having a full social presence of the kind that unlabeled people take for granted. Replacing IQ T. Stainton (timst@mail.ubc.ca)* *School of Social Work, University of British Columbia,Vancouver, Canada Aim: To discuss the concept of intelligence as an indicator for intellectual disabilities (ID). Method: Policy analysis. Results: The continuing debate on intelligence as the main indicator of ID raises the question as to its usefulness for determining eligibility issues in policy and practice. This paper will consider what functions a denition of ID plays in a policy context and from that basis examines what options may exist to replace IQ as a feature of dening ID and the consequent supports that might ow from such a denition. Conclusions: Focusing on the need for adequate supports, the current indicator of intelligence as an indicator of ID is less than adequate. Unthinking intellectual disability M. K. Simpson (m.k.simpson@dundee.ac.uk)* *School of Education, Social Work and Community Education, University of Dundee, Scotland, UK Aim: To discuss the tension between intellectual disability as a special social category and the recognition of people situated within said group as having the same rights as others. Method: Policy and literature analysis. Results: The nature of increasingly complex contemporary societies is such that some people cannot easily adapt to it. Intellectual disability, therefore, constitutes an important social mechanism for supporting vulnerable individuals. On the other hand, there is a latent logic in the assertion of the fundamental equality of people with intellectual disabilities that they should not enjoy such a privileged, protected status. Conclusions: Although the concepts of intelligence and ID are relatively recent and specic, they cannot easily be unthought. Their contingent nature suggests that, if they do pass into history, it is unlikely to be a result of determined argument. Posters: The Riot Self-Advocacy Survey
J. Daignault (jdaignault@hsri.org)* *Human Services Research Institute, US Aim: Self-advocacy groups exist in states and local communities in many countries, yet little is known about the purpose of these groups, demographics of group members, the issues they consider important, and the level of support they receive. Method: Data were gathered via an electronic survey distributed to 3,859 Riot newsletter readers primarily located in North America, and directors of state developmental disability service agencies in the US. Survey recipients were asked to take the survey if they were self-advocates and members of self-advocacy groups. If not a self-advocate, recipients were asked to forward the survey link to members of self-advocacy groups. Results: Results describe characteristics of local, state, and national self-advocacy groups including demographic information about members, why groups meet, and important issues. Conclusions: Findings offer insight into what self-advocacy groups and their supporters can do to strengthen their grassroots efforts at the local, state, and national levels. Colonial time to present day: Intellectual disability in NSW B. Field (Barbara.Field@sydney.edu.au)* *Sydney University, Australia Aim: To examine the parallels and differences with the discourses of Britain and Europe in the story of intellectual disability in NSW since 1788. Method: Data was obtained from records in State Archives and letters and written accounts of the early settlers. Results: Processes of exclusion prevailed in the early days of the colony. Eras of abandonment and imprisonment gave way to connement in asylums and mental hospitals. Segregation continued in special facilities until the 1980s when inclusion was advocated by the social rights movement. A period of progress in community living began but policy changes and indecision led to inadequate service provision, which necessitated a re-evaluation. Conclusions: The new Disability Policy framework and a National Disability Insurance Scheme have potential for a better life for the intellectually disabled in Australia. There has been continuing conict and competition for funding between the medical and social models of care which require resolution. Peter the wild boy: An 18th Century case study in representation and inclusion N. Grove (DrNicolaGrove@fastmail.net)*, R. Meader,T. Lumley Smith, B. Marshall, C. Fleat, K. Branch & V. Ross *Openstorytellers Limited, Black Swan Arts, England, UK Aim: This presentation will feature the story of Peter, who was found as a boy living wild in Germany, brought to Kensington Palace in London, and became famous through the writings of Jonathan Swift, Daniel Defoe, and other novelists and political writers. He has recently been identied as having Pitt Hopkins syndrome. Method: Openstorytellers take the story of Peter, from his time in the forest, to the court, to the farm where he grew up, his imprisonment and near death, to his old age, where he appears to have been both respected and accepted. The story will be shown through drawings by Openstorytellers artist, photographs of performance and extracts from contemporary documents, focusing on Defoes question of whether a person who cannot speak has a soul. Results: At each point we consider the implications of Peters experiences for the ways in which people who are non-speaking and have disabilities are treated in contemporary society. Although initially it may seem that Peter suffered abuse and discrimination, careful analysis of his case reveals instances of care, compassion and concern. Conclusions: We conclude with Defoes own words, after a long treatise arguing the case for the humanity of all individuals.

Posters: A project to develop teaching and training resources for the Breast and Cervical National Health Service Screening Programmes in Wales L. Hughes (linda.hughes3@wales.nhs.uk)* & H. Ramessur-Marsden *Public Health Wales NHS Trust, Screening Division,Wales Aim: The aim of the project was to develop teaching/training resources for learning disability teams to use with their clients to deliver information on both the Breast and Cervical National Health Service Screening Programmes in Wales. Method: The project was conducted using a Clinical Governance Model under the direction of the Patient Accelerating Change (PAC) programme. This programme was launched in 2003 by the NHS Clinical Governance Support Team and the Picker Institute Europe, and nabled the project team to involve service users in developing solutions. Results: Two web-based teaching packs were developed covering the breast and cervical screening processes. The packs were prepared in a simple pictorial format with very little text. The language used was simplied and the pictures shown are real images not animated cartoons. The packs are designed to be used by the Learning Disability Nurses with their clients. Conclusions: Overall the evaluations showed that the pack was very well received and that it was an essential training resource to assist Learning Disability Teams. Currently there was no comparable resource available. The level of interest from allied agencies across the UK for the resource has been high. Interviewing persons with developmental disabilities:Tools and processes created with community partners C. Kidney (ckidney@pdx.edu)* & K. McDonald *Portland State University, Oregon, US Aim: To conduct research with people with developmental disabilities (DD), researchers must remove barriers to participation and strive to safely and respectfully engage them in research. Inaccessible research tools (e.g. text-based consent forms) and processes (e.g. abstract interview questions) may lead to participation without fully-informed consent (Dalton & McVilly, 2004), leading to results with questionable validity, or exclusion from research, resulting in further marginalization and loss of potential benets of inclusion in research (Iacono & Murray, 2003; Lai et al., 2006). The socio-ecological model of disability emphasizes participant-research context t, with awareness of individual differences in familiarity with, and perceptions of, varied research contexts (Gilbert, 2004; Rodgers, 1999). We applied this model to a qualitative study in order to develop tools and processes aimed at safely and respectfully engaging adults with (DD) in our study. Method: We collaborated with two consultants with developmental disabilities to create research materials and procedures that accommodate the needs and preferences of people with developmental disabilities. Results: The collaboration yielded accessible tools and processes that were implemented successfully in our qualitative study. Conclusions: Our poster will display our tools and processes. We will provide reections on the benets and challenges of collaborating with community partners. Reproductive health awareness of caregivers toward women with intellectual disabilities L.-P. Lin (sasalin@ndmctsgh.edu.tw)* & Jin-Ding Lin *National Defense Medical Center, Taipei, Taiwan Aim: Limited attention has been paid to the reproductive health as it affects women with intellectual disabilities (ID). This paper describes caregiver awareness of reproductive health issues of women with ID being cared for in welfare institutions. Method: The study was cross-sectional and questionnaire-based, and recruited 1,152 caregivers from 32 registered disability-welfare institutions in Taiwan. Their awareness of reproductive health issues was classied into four domains: menstrual/ menopause issues, sex education, and reproductive health services. Each domain had ve associated yes/no questions. Data were analyzed using SPSS 15.0 software. Results: Caregivers were familiar with matters concerning sex education, menopause, and reproductive health services, but lacked adequate understanding of menstrual issues in women with ID. Caregivers lacked adequate knowledge about reproductive health such as menstrual pain, age at menarche, masturbation, diet during perimenopause, and publicly available reproductive health services. Logistic regression analysis revealed that female caregivers with a university degree, and those who had experience assisting with reproductive health care, were more inclined to have higher reproductive health awareness scores than their counterparts. Conclusions: Service providers should offer appropriate reproductive health education to institutional caregivers. Future research should focus on the personal experiences and concerns of women with ID. Posters:
Sexual solicitation by internet of youths with an intellectual disability or pervasive delopmental disorder C. Normand (claude.normand@uqo.ca)* & F. Sallafranque-St-Louis *LUniversit du Qubec, Canada Aim: Studies demonstrate that youth are vulnerable to online sexual solicitation. However, no study has estimated this risk for youth with an intellectual disability (ID) or autism spectrum disorder (ASD). As more and more youth and adults with ID or ASD spend time online, it is very likely that they too can encounter cyberbullying or sexual solicitation. The aim of this presentation is to show the risk factors associated with sexual solicitation on the Internet found in the scientic literature can be applied to the population of internet users with ID or ASD. Methods: Literature review with application to populations with ID or ASD. Results and Conclusions: Sexual and physical abuse, social isolation, loneliness, depression, chatting, and downloading of pornographic material have been found to increase the risk of being prey to sexual solicitation on the internet. Recommendations are made with regards to preventing sexual solicitation and abuse by: sexual education which includes privacy and safety issues related to internet use; promoting self-esteem, mental health and social support networks of people with ID or ASD; and enhancing staff and parent awareness of sexual solicitation and cyberbullying. We conclude by raising the need for future research to estimate the prevalence and gain a better understanding of the phenomenon for this specic population. Facilitating participation in the process of securing ethical approval: The need for reasonable adjustments in participatory research R. Northway (rnorthwa@glam.ac.uk)*, J. Howarth & L. Evans *University of Glamorgan,Wales, UK Aim: If participatory research is to promote full participation in investigative processes, then securing ethical approval needs to be included. However, this aspect has not been widely explored. The aim here was to promote as much participation as possible, to learn from and to reect upon the process. Method: People with intellectual disabilities were involved in the ethical review process as co-researchers and as members of the research advisory group. Participation involved a range of activities including developing the data collection tools, reviewing information sheets, and attending the ethics committee. Permission was obtained from the committee to develop an easy read version of the application form and the study protocol. Results: By working together the research team and the ethics committee were able to make reasonable adjustments to the process of securing approval that enabled people with intellectual disabilities to participate in a meaningful way. Conclusions: Rather than viewing people with intellectual disabilities as not being able to participate in securing ethical approval, the process of securing such approval should be the focus with reasonable adjustments being made, as required. Accessible meeting venues for group and individual needs and enhancing collaborations S. Romelczyk (sromelczyk@aucd.org)* & H. Spears *The Association of University Centers on Disabilities (AUCD), Silver Spring, Maryland, US Aim: The Association of University Centers on Disabilities (AUCD) plays an integral role in connecting disability researchers and advocates, policymakers, and community partners throughout the year at different venues. AUCD considers venue and meeting accessibility fundamental to building collaborations within the disability eld. Method: Accessibility impacts the success of meetings and the ability of leaders within the eld to connect and share current research. Venue selection is multi-tiered and includes self-advocates and multiple perspectives to anticipate and accommodate for individual needs of every attendee, and provide a space for meaningful collaborations. Through a multi-tiered site selection process, AUCD conducts structured interviews with site-selection consultants, site assessments of facilities and procedures using an adapted accessibility checklist, and collaborates with self-advocates throughout the selection process. Results: Once selected, site amenities and accessibility features are detailed in a web-portal hosted by AUCD for meeting registrants. Meetings are tailored to the needs of attendees including particular accommodations, food allergies, or sensory issues to ensure maximized comfort and access. Planning for the 2011 Self-Advocacy Summit Series and the 2011/ 2012 Disability and Health Partners Meetings incorporated these strategies. Conclusions: AUCD hosts accessible meetings that allow for networking and collaboration of disability leaders throughout the US.

Posters: Accessible meetings and events C. Miclea Rotsko (cmiclea@aucd.org)* *Association of University Centers on Disabilities (AUCD), Silver Spring, Maryland, US Aim: Although meetings represent an important opportunity for networking and exchanging ideas, there are many challenges that people with disabilities face when attending meetings. Accessibility is essential to creating an environment that accommodates people with disabilities. Furthermore, allowing attendees to be comfortable provides the venue for user participation and meaningful communication.This poster on accessible meetings will provide specic guidelines, along with pictures of accessible set-ups showing accessibility requirements implemented in practice. Method: The focus will be on meeting room set-up, audio-visual set-up, and food and beverage set-up and service options, based on attendees needs. All guidelines presented are based on practical experience gained through planning the series of ve regional summits for self-advocates entitled Envisioning the Future: Allies in Self-Advocacy held in the US between March 10th and May 17th, 2011. Accessibility requirements were thoroughly followed and they proved effective in accommodating people with different types of disabilities. Results and Conclusions: As all recommendations have been developed after successfully hosting ve summits for self-advocates, it is safe to say that these best practices represent essential tools in creating an environment where people with disabilities are comfortable to network, exchange ideas and empowered to advocate on their behalf. Posters:
Implementation of individualized P.R.N. Protocols in community-based settings: A least restraints tool P.Turcotte (patti.turcotte@nbrhc.on.ca)*, K. Boss, S. Chandler, K. McEntee, K. Beatty & L. Marwick *North Bay Regional Health Centre, Ontario, Canada Aim: We describe a user-friendly PRN Protocol template and workbook that integrates pharmacological and non-pharmacological approaches to achieve empowerment and least restraints. Method: Case-based studies and pre- and post- measures will illustrate the effectiveness of this tool across settings (community, hospital) in: (1) reducing polypharmacy, P.R.N. usage, chemical and mechanical restraint; (2) supporting skill development, self advocacy, environmental modications, overall consistency of approaches, and transdisciplinary assessment and treatment; (3) providing a vehicle to optimize client and family contributions, avoiding the diagnostic pitfall of diagnostic overemphasis (or attributing every behavioural incident or expression to an underlying Axis 1 disorder), and instead (4) supporting the exploration of situational or behavioural factors. Results: Results will be embedded within individual case studies (intra-subject). Conclusions: The P.R.N. template and workbook is a simple tool that can aid in holistic assessment and treatment planning across settings and across individuals.

Symposium: Supportive parenting and parent support I Parenting children with intellectual disability: Understanding the risk and protective factors R. Ellingsen (ruth.ellingsen@gmail.com)* & B. Baker *University of California, Los Angeles, California, US Aim: This study aimed to understand why some parents manage to demonstrate effective parenting despite formidable challenges. We examined three risk domains: child intellectual disability (ID), child behaviour problems, and parent depression. The outcome was positive parenting. We hypothesized that each of the risk factors would predict poorer parenting, and that the effect on parenting would be cumulative. We also hypothesized that parent education, health, and optimism would increase positive parenting in the face of risk. Method: This study used data from 238 families of children with ID (n = 104) and typical development (n = 134). Data were collected at child ages 3 and 5. Results: Levels of positive parenting differed across levels of risk (p < .01). When protective factors were included, education and optimism predicted positive parenting at ages 3 and 5 (p < .05); health was an additional predictor at age 5 (p < .05). There was an interaction between risk and education (p < .05); parents with higher education engaged in more positive parenting at higher levels of risk than parents with less education. Conclusions: Mother education may be a protective factor when parents are faced with higher risk. There may be changes in factors that inuence parenting as the child ages. Emotion regulation and social competence: Bidirectional pathways in the context of family relationships L. Berkovits (lberkovits@ucla.edu)* & B. L. Baker *University of California, Los Angeles, California, US Aim: Children with intellectual disabilities (ID) are at risk for poor social outcomes. Among children with typical development (TD), social competence has been linked with emotional understanding and regulation and with parent-child relationships. This study examines the relationship between emotion regulation and social development in children with and without ID and aims to determine how parenting may inuence these pathways. Method: The subjects were children with ID (n = 61) and TD (n = 113) assessed as part of a longitudinal study on child development and family processes. Emotion regulation and social outcomes were measured at ages 7, 8, and 9 via mother report on the Emotion Regulation Checklists Lability/Negativity subscale (ERC-LN; Shields & Cicchetti, 1995) and the Child Behavior Checklists Social Problems subscale (CBCL-SP; Achenbach & Rescorla, 2001). Results: Cross-lagged analyses revealed a signicant bidirectional pathway between ERC-LN and CBCL-SP for the TD group only. Conclusions: These results highlight an important framework for understanding social and emotional development in children with TD, but suggest that other pathways may be more relevant for children with ID. Parenting and other child variables will be explored within this model to test alternative processes in the ID group. Parents of children with disability and their experience of received support H. Nowak (hera.nowak@grkom.se)* *Research and Development Center in Gothenburg Region, Sweden Aim: The Swedish government recognizes that parents of children with a disability need extra support both nancially and in everyday life. The aim of this study was to explore parents experiences of received support given to them and their children with a disability. Method: A semi-structured interview was conducted with six parents of children with intellectual disabilities in the western region of Sweden. The interview guide focused on how parents perceived support that was available to them and their children. Results: Parents described the amounts of support and variety of services available to them and to their children. Parents felt that the quality of care and support were to some extent inadequate as no attention was paid to their needs or wishes. This feeling of inadequacy seems to relate to the process of getting services and parents expectation of support. Conclusions: The ndings in this study reveal a need to examine how decisions about support are made, and the level of quality of the support available for children with disabilities as well as their parents. Professionals need to consider parents perspectives before making a decision on what kind of support is really needed and how it could be best delivered. Symposium: Supportive parenting and parent support II
Families
Parental participation and satisfaction with services across childhood and adolescence of their child with a disability D. Norlin (David.norlin@grkom.se)* & M. Broberg *Department of Psychology at University of Gothenburg and Research and Development Center in Gothenburg Region, Sweden Aim: Support to families with a child with a disability is increasingly guided by a family-centred paradigm, where service workers strive to establish a parent-professional partnership enabling parents involvement and empowerment. Different child disability characteristics and transition phases in the childs development present different challenges to parents participation in service delivery. The aim of this study was to investigate parents satisfaction and self-rated participation in planning and decision making about services delivered to their child with a disability, in relation to the childs age and diagnostic group. Method: Structured telephone interviews are currently being conducted with parents of children eligible for services (n = 250). Results and Conclusions: Data will be examined for relations between parental participation and satisfaction with services, and between differences in parental participation and satisfaction to child age and diagnosis. Analysis will focus on the identication of groups of children or phases in childrens life where efforts to facilitate parental participation need to be intensied.
How are children with disability included in the planning and evaluation of support? M. Starke (Mikaela.starke@socwork.gu.se)* & M. Broberg *Departments of Social Work, University of Gothenburg, Sweden Aim: The Swedish National Board on Health and Welfare (2009) report that professionals seldom or never take into account the opinions of children with disabilities in planning of support. Instead the professionals rely on parents requests and descriptions of the childrens need for support. The aim of this study was to explore parents and professionals descriptions of inclusion of children with disability in the planning and evaluation of support. Method: A web survey is presently being administered to social workers responsible for support to families with children with disabilities in a city in Sweden and two small municipalities (n = 150). Structured telephone interviews will be carried out with a random sample of 15% of the families eligible for services (n = 250). Results: Analyses will focus on issues concerning child participation in the planning and evaluation of support. Are children offered possibilities to be heard about support needs? Are childrens experiences taken into account when an evaluation of support is being made? Professional and parental satisfaction will be explored. Conclusions: The paper aims to discuss and identify possibilities for improvement in childrens activity and participation in the process of support to children with disabilities and their families.

Symposium: Growing up and grown up: International perspectives on family well-being I & II Well-being in Canadian parents of preschoolers with delays and disabilities transitioning into school P. Minnes (patricia.minnes@queensu.ca)*, A. Perry & J. Weiss *Queens University, Kingston, Ontario, Canada Aim: The purpose of this research was to identify predictors of positive outcomes for parents of young children with developmental delays and disabilities during their childs transition into school. Method: HELPS Inc is a Canadian research team focusing on health, education, and parent factors promoting social inclusion of young children with developmental delays and disabilities. Parents (n = 131) of children between the ages of 3 and 6 years completed an online or paper survey. Using the ABCX model of family adaptation (McCubbin & Patterson, 1983) as a framework, we measured child characteristics, parent resources, perceptions, and adaptation. Results: Multiple regression analysis included disability type; adaptive behaviour; formal and informal supports; parent advocacy; perceived self-efcacy; parent distress; and knowledge of childs disability as predictor variables. The dependent variable was parent perceptions of positive gains as a measure of wellbeing. Greater positive perceptions were associated with lower parent distress (p = .03), higher parent efcacy (p = .008), and more parent knowledge (p = .02). Conclusions: Although parent distress is an important factor to consider in research, these results highlight the potential roles of parents self-efcacy and perceived knowledge of their childs disability as contributors to positive parent outcomes. Family impacts in families of children with severe DD A. Perry (perry@yorku.ca)*, J. Weiss & P. Minnes *Department of Psychology,York University, Toronto, Ontario, Canada Aim: Family research has traditionally focused on stress and other negative outcomes, but the eld has recently begun to focus on more positive aspects of parents experience. This study explored both positive and negative impacts of parenting a child with severe developmental disabilities (DD). Method: GO4KIDDS is a Canadian team project exploring the health, wellbeing, and social inclusion of school-aged children with severe DD and that of their parents. To date, approximately 180 families have completed an online or paper survey. Positive outcomes were measured using the Family Impact of Childhood Disability Scale (Trute & Hiebert-Murphy, 2002) and predictors/correlates of impact were examined according a dual outcome model (Perry, 2004). Results: Preliminary results (n = 110) suggest that positive and negative impacts were uncorrelated (r = .11). Predictors of negative impact included Child Characteristics and Formal Supports. However, predictors of positive impact were different and included Individual Resources, Family Resources, and Informal Social Support. Conclusions: Previous research has focused on the difcult realities parents of children with DD experience. Understanding that they may also experience some degree of fulllment in their role is important in balancing our view of these parents. Longitudinal relationship between maternal well-being and child behaviour in young children with ASD V.Totsika (v.totsika@bangor.ac.uk)*, R. P. Hastings, E. Emerson, D. M. Berridge & G. A. Lancaster *Bangor University,Wales, UK Aim: The study aimed to examine: (a) the longitudinal relationship between maternal well-being and child behaviour in families with a child with an autism spectrum disorder (ASD), and (b) whether this relationship is bidirectional. Data from 132 families were drawn from the Millennium Cohort Survey. Method: Children were aged 9 months, 3 years and 5 years. Cross-lagged longitudinal models were used to examine the association between childrens challenging behaviours and prosocial skills with maternal psychological distress, life satisfaction and physical health. Results: Findings suggested: (a) no bidirectional effects, (b) signicant longitudinal effects on child behaviour from earlier maternal life satisfaction, psychological distress and physical health status, and (c) signicant longitudinal effects of child prosocial skills on later maternal life satisfaction and psychological distress. Conclusions: During the rst ve years of life, increased physical and mental health problems in mothers seem to be signicant risk factors for later behaviour problems in children. Increased life satisfaction may increase family resilience by acting as a protective factor for child behaviour problems. However, childrens behaviour problems do not have any adverse longitudinal effects on maternal well-being in the early years. Higher prosocial skills seem to have a positive effect on later maternal psychological adaptation.
Families
Symposium: Growing up and grown up: International perspectives on family well-being I & II (continued) The well-being of parents of adolescents with IDD: Results from the Special Olympics Family Resiliency Study J. Kersh (joanne.kersh@umb.edu)*, G. N. Siperstein & A. L. Moskowitz *Center for Social Development and Education, University of Massachusetts, Boston, Massachusetts, US Aim: This study explored three indicators of psychological well-being in parents of adolescents with intellectual and developmental disabilities (IDD). Method: The sample consisted of 390 parents of adolescents (ages 1221) with IDD who were active in Special Olympics in the US. Parents completed an online survey about family well-being. Three different aspects of parent psychological well-being were explored: (1) parenting stress; (2) parent efcacy; and (3) global ego-resiliency. Data were also gathered on child disability, family SES, life events, child behaviours, parent emotion and experiences, and sources and perceived helpfulness of social supports. Results: Overall, these parents reported high levels of well-being. Parallel regression analyses suggested that above and beyond different demographic, child, and parent-level variables, the three measures of well-being were associated with different types of social support. More specically, parent empowerment was associated with helpfulness of professional supports, while parenting stress and ego-resiliency were associated with family support. Conclusions: While having an adolescent with a disability can bring atypical experiences and challenges for parents, negative psychological adjustment cannot be assumed. Just as in families of typically developing youth, a variety of factors impact parental well-being. The importance and role of social supports is discussed. Contributors to life satisfaction in parents of an adult child with Down syndrome M. Cuskelly (m.cuskelly@uq.edu.au)*, L. Gilmore & S. White *University of Queensland, Australia Aim: The study investigated: (1) concurrent relationships between measures of family life and parental satisfaction with life in parents of an adult with Down syndrome and (2) inuence of early family functioning on current parental satisfaction. Method: Sixty-two families were interviewed using a semi-structured interview, and responded to a series of questionnaires related to family functioning when their child with Down syndrome was between 7 and 15 years. Fifteen years later parents were asked to provide data on their current situation, including mental health, and satisfaction and difculties with respect to care-giving in relation to their adult child. Results: Over half the families provided data to the second phase of the study. Life circumstances were appreciably worse for a small group of families than had been the case 15 years previously; however, these changes were generally unrelated to their parenting role. Overall, parents reported experiencing satisfaction from their care-giving role and did not report high levels of difculties emanating from this role. Conclusions: Most parents demonstrated good levels of personal functioning, although there was a small group for whom this was not the case. Earlier functioning did not make a strong contribution to current levels of life satisfaction. Still resilient after all these years: Parents raising children with intellectual disability J. Blacher (jan.blacher@ucr.edu)*, B. L. Baker & R. Ellingsen *Graduate School of Education, University of California, US Aim: The authors will present data from a longitudinal study of parents of children with and without intellectual disabilities (ID) that supports a theory of positivity as a key underpinning of resilience. In doing so, specic factors protecting parents from child-rearing stresses will be identied. Method: This presentation will involve summarizing data from several studies, using multiple methods (modeling techniques, parametric analyses), including questionnaire, behavioural observations, and case study. Samples for each study will range somewhat, but the total sample includes: 219 families, with children ranging from 3 to 9 years old; 75 with ID, and 141 typically developing; 78% were Anglo and 23% were Latino. Results: Combined results of three different studies to be summarized in this presentation, as well as new data on parental optimism, are consistent in showing long-term trends in positivity, although there is a decrease in positive perceptions over time. Conclusions: Findings support the contention that many parents of children with ID are resilient, and nd much positivity in their perceptions of their children, with some aspects of positive perceptions and dispositional traits such as optimism serving as moderators of adverse outcomes.

Symposium: Growing up and grown up: International perspectives on family well-being I & II (continued) A prototype for maternal well-being: Evidence-based genesis L. M. Glidden (lmglidden@smcm.edu)*, K. A. Grein & J. A. Ludwig *St. Marys College of Maryland, US Aim: Individual differences in families, parents, and children with intellectual and developmental disabilities (IDD) inuence the well-being of all family members. Our aim is to summarize ndings on family and parent variables that we have found to predict maternal well-being over time. Method: We followed 249 US families longitudinally for 23 years: 123 who had adopted their children with IDD knowing of their disabilities, and 126 families who had similar children born to them. Measurements were conducted with the children when they were, on average, 1, 6, 12, 18 and 26 years old. The etiology of the childrens disabilities was varied, but 40% of the sample had Down syndrome. Family and parent predictor variables of maternal depression and subjective well-being were: family income, maternal education, adoptive/birth status, marital status, maternal personality, and maternal coping strategies. Results: Consistent predictors of maternal depression and subjective well-being across time and outcome variables were escape-avoidance coping and the personality variable of neuroticism. Higher levels of neuroticism and more frequent use of escapeavoidance coping predicted greater depression and lower levels of subjective well-being. Conclusions: Personal characteristics and behaviours are more robust predictors of well-being than structural and status variables such as marital and socioeconomic status.
Families
Symposium: Parents of youth with intellectual disability and ASD: Supports, involvement, and culture The relation between family support and well-being for Latino families with children with disabilities S. R. Cohen (shana.cohen@ucr.edu)*, S. D. Holloway & I. Dominguez-Pareto *University of California, Riverside, US Aim: Mothers who raise a child with an intellectual disability (ID) may experience more stress than mothers who care for typically-developing children and may benet from support. Latina mothers in particular who raise a child with ID experience more depression than non-Latina mothers. The aim of this study was to understand what supports are relevant to Latina mothers with children with ID, how that support relates to caregiver and family well-being, and whether ethnicity moderates this relationship. Method: We described the types and sources of familial support that are available to 146 married or partnered mothers (84 Latinas, 62 nonLatinas), with children with ID. Then, we examined how that support related to family and caregiver well-being. Results: Latina mothers had signicantly less partner emotional support than non-Latina mothers (2 = 5.29, p < 0.05). Latina and non-Latina mothers did not differ on other dimensions of support (i.e., instrumental). Partner emotional support and some instrumental support signicantly predicted caregiver and family well-being. Partner emotional support had a greater inuence on parenting self-efcacy for Latina mothers than for non-Latina mothers. Conclusions: Emotional support may be more important than instrumental support for caregivers to feel satised with their life and efcacious about their parenting. Improving social responsiveness in adolescents with ASD using a parent-mediated intervention:The UCLA PEERS program E. Laugeson (elaugeson@mednet.ucla.edu)*, F. Frankel, A. Gantman, A. Dillon & C. Mogil *UCLA Semel Institute, Los Angeles, California, US Aim: The purpose of this study was to test the efcacy of a parent-assisted social skills intervention for adolescents with autism spectrum disorders (ASD). Method: Twenty-eight high-functioning adolescents with ASD and their parents participated in the study. Treatment outcomes among participants receiving the PEERS intervention were compared to outcomes from a delayed-treatment control group. Results: Major ndings reveal that treatment participants, in comparison to delayed-treatment control participants, signicantly improved their social responsiveness on the Social Responsiveness Scale (SRS; p < 0.01) in social awareness (p < 0.05), social cognition (p < 0.05), and social communication (p < 0.01). Improved overall social skills on the Social Skills Rating System (SSRS; p < 0.01) in the areas of cooperation (p < 0.01), assertion (p < 0.05), and responsibility (p < 0.01) were observed. Fourteen-week follow-up assessment reveal that treatment gains were maintained on the SRS (p < 0.01) and SSRS (p < 0.01), with further improvements in the areas of decreased problem behaviors (p < 0.01), decreased externalizing (p < 0.01), and increased self-control (p < 0.01). Conclusions: Findings suggest that PEERS, a parent-mediated treatment, is efcacious in improving social responsiveness and overall social skills for teens with ASD. Family involvement and impact during the period of transition for youth with ASD B. Kraemer (shana.cohen@ucr.edu)* *San Diego State University, California, US Aim: This study examined the period of transition for youth with autism spectrum disorder (ASD) and their families. Specically, family involvement in transition planning and family impact were examined. Method: Participants were 95 families with youth with ASD between the ages of 1626. The majority of youth were male (85.3%) and Caucasian (73.7%). Thirty-two percent had exited the school system. Respondents, primarily mothers (71.6%), were interviewed in their own homes. Results: The majority of families (50%) felt they did not have knowledge of adult autism services and that few services were available. Parent involvement in transition and views of transition success were related to youth diagnosis and exit status, with parents of youth with ASD who were higher functioning and had exited school less satised with their involvement and viewing transition as less successful. The majority of parents frequently worried about transition, with 60% of respondents reporting that worries affected their personal well-being. When compared to a sample of families (N = 206) with transition-age sons/daughters with intellectual disability but not autism, the current sample of families reported increased parent stress (t = 5.3; p < .001). Conclusions: Implications for working with, and supporting families, during the transition period will be discussed.
A study of Nigerian families who have children with and without Down syndrome P. Ajuwon (ajuwon@sbcglobal.net)* *Department of Counseling and Special Education, Missouri State University, US Aim: The objective of this presentation is to share the results of a family quality of life project in two groups of families in Nigeria: those with a child who has Down syndrome, and those from household composition but without a child with disability. Method: The author used the FQOLs 2006 (Brown et al. 2006) to survey 30 NDS families in the general population, and 31 DS families whose children attend a private-funded school in Lagos, Nigeria. Data from the two groups were analyzed in terms of quantitative and qualitative information. Results: There were distinct group differences on attainment and satisfaction on a number of domains (e.g. health and nancial well-being). Both groups reported low levels of emotional and instrumental support from relatives, friends, and neighbours. More NDS families than DS families reported high satisfaction levels in the values domain. There were between-group differences in reported career satisfaction, as well as noticeable group differences in reported satisfaction in the leisure/recreation domain. However, many more NDS families than DS families reported high satisfaction levels in the community domain. Conclusions: The above results indicate a need to identify and provide support systems that would increase the well-being of families in general.

Symposium:The role of short breaks in the lives of children and young people with intellectual disabilities and their families I Everybody needs a break! The relation between need, availability and usage of respite-care and contextual, parental and child factors M. Broberg (Malin.Broberg@psy.gu.se)* & M. Starke *University of Gothenburg, Gothenburg, Sweden Aim: Parents caring for a child with severe disabilities face continuous challenges and indicate that the formal support they receive is one of the most important factors for coping with the situation. This presentation will explore parents and professionals view of the use, need for, and availability of different forms of arrangements for short-breaks, and to study the relation between expressed need for and usage of respite and different parent and child factors: socioeconomic, disability, diagnose and well-being. Method: A web survey is presently being administered to social workers responsible for support to families with children with disabilities in the second biggest city in Sweden and two small municipalities (n = 150). Structured telephone interviews with parents will be carried out with a random sample of 15% of the families eligible for services (n = 250). Parents will also answer a web survey on their own and their childs well-being using HADS and SDQ. Results and Conclusions: Analyses will focus on describing the expressed need for, availability and usage of respite in the municipalities, and relate this to parental and child related factors with the aim of identifying possibilities for improvement taking the contextual, legislative and organizational issues into account. Evaluating the impact of short breaks on families with a disabled child/ young person: Findings and questions C. Hatton (chris.hatton@lancaster.ac.uk)*,V. Welch, M. Collins, E. Wells, S. Langer, J. Robertson & E. Emerson *Center for Disability Research, Lancaster University, UK Aim: The aim of this mixed methods study was to provide evidence concerning the impact of short breaks on families with a disabled child/ young person in England. Method: Largely quantitative survey data were collected from 347 main carers (almost all parents) of a disabled child/ young person across England, 214 of whom provided follow-up data 10 months later. Survey data were also collected from approximately 80 disabled children/young people and 80 of their siblings. Qualitative data were collected via interviews, observations and narratives. Information collected included family usage of short breaks, the health and well-being of family members, and demographic, household and socio-economic factors. Results: Families report high levels of satisfaction with short break providers, but less satisfaction with processes surrounding short break allocation. Disabled children, siblings and family carers all report positive impacts of short breaks, with a particularly robust impact on carers. However, there is massive variation and uctuation in how much families get and there is little evidence that short breaks are allocated according to the needs of families. Conclusions: Policy questions arising from this study include: 1) What counts as a short break? 2) Who are short breaks really for? 3) How should short breaks be allocated? Short break services to families and disabled young people whose behaviour is severely challenging R. McConkey (r.mcconkey@ulster.ac.uk)* & C. Gent *Institute of Nursing Research, University of Ulster, Northern Ireland Aim: Short break (respite) services are a common form of supporting families with children who have challenging behaviours but limited information is available on the effectiveness of such services. Method: An evaluation was undertaken of three services in the UK which combine overnight breaks with intensive support to families in home and community settings. Information was obtained on 123 young people and families who use, or had used the services in the previous two years. Ratings were made by key-workers of changes in the children and families over a six-month period. In addition 44 individual interviews were undertaken with the main stake-holders who were personally involved with a selected sample of 17 children the primary carer, the familys key-worker, and their social worker. Results: The children had developed a range of skills which reduced their challenging behaviours. They had increased opportunities for participating in community activities although their social inclusion remained limited compared to their non-disabled peers. Parents beneted when their support needs are identied and trusted relationships forged. Conclusions: Merely providing a break is insufcient to help reduce the stresses families experience. A detailed service model has been dened to inform the commissioning of similar services.
Families
Symposium:The role of short breaks in the lives of children and young people with intellectual disabilities and their families II Outcomes for the START Childrens Retreat Therapeutic Respite Center J. B. Beasley (joan.beasley@unh.edu)* & A. D. Hurley *Center for START Services, Institute on Disability/University of New Hampshire, US Aim: To support families of children with intellectual disabilities (ID) and complex mental health presentations by providing a therapeutic respite center embedded within a model of systems collaboration. Our goal is to help families remain intact while improving the lives of their children. Method: The START Childrens Retreat is a therapeutic respite center in Cincinnati, Ohio. START (Systemic, Therapeutic, Assessment, Respite and Treatment) fosters linkages and supports the service system. The weekend center is a four- bed highly structured therapeutic setting for ages 616. Services provided throughout the week include: outreach, in-home supports, consultation to schools, linkages with clinicians and providers, and cross-systems crisis prevention and intervention planning, in addition to training and consultation with national experts. Results: The majority of the children were diagnosed with autism, were on multiple psychiatric medications, and exhibited aggression and SIB. While all families were considered at high risk for requiring placement at the time of referral, no placements were needed and one family reunied. The program will expand to 7 days and include emergency stays. Descriptive and outcome data will be discussed. Conclusions: START Therapeutic respite provides children with complex needs the resources they need to remain with their families.
Short breaks for young adults and respite for parents J. Clegg (jennifer.clegg@nottingham.ac.uk)*, K. Almack & E. Murphy *University of Nottingham, England, UK Aim: To examine accounts given by parents who wish for, and succeed or fail to obtain, short breaks in adult services for their young people as they leave school. Method: We studied the transition to adult services over 18 months for a cohort of 28 young people with moderate-profound intellectual disabilities (ID) in two different localities. Method: Methods included face-to-face and telephone interviews, diaries, and observations, supported by documentary analysis, as we focussed on interfaces between all parties as packages of care were negotiated. Results: In 10 of these 28 cases parents did not seek short breaks in adult services. Eleven (11) of the remaining 18 who wanted short breaks secured them, (9 in hostels and 2 with adult foster-families). Despite funding differences, locality was not signicant. This paper summarises the characteristics of each group, focussing in particular upon the 7 who wanted short breaks but had not arranged them 12 months after the young person left school. Conclusions: The way that parents strove to articulate and negotiate suitable breaks for young people, and attempted to balance these with/against their own needs and wishes, provides further evidence that current policies and discourses place parents in (morally) ambiguous situations and positions.

Symposium: Intervention issues in the early years for students with autism and intellectual disability Enhancing parental well-being and coping through a family-centred, short course for Iranian parents of children with an autism spectrum disorder R. McConkey (r.mcconkey@ulster.ac.uk)* & S. A. Samadi *University of Ulster, Northern Ireland, UK Aim: Parents of children with autism spectrum disorders (ASD) generally experience high levels of stress and report poorer emotional well-being and family functioning compared to parents of children with other disabilities. This paper reports the impact of a seven session course with two groups of parents of children with ASD (N = 37). Method: In addition to providing information about ASD, emphasis was placed on families sharing their experiences and learning from one another. A pre-post, cross-over design was used to evaluate the specic impact of the course using standardised, self-report scales . Results: Although there were variations across the parents, in general they were signicantly less stressed, had better emotional well-being and family functioning and made more use of problem-focused coping strategies. The changes were replicated with a second group and were sustained up to 15 weeks after the course ended, and some changes were maintained up to 12 months later. Conclusions: The positive impact was attributed mainly to an increase in the informal supports among the parents and their feelings of empowerment. A resource pack has been developed to enable the group sessions to be easily repeated and for facilitators to be trained in its use. Enhancing family connections via technology (Google SketchUp) for children with autism spectrum disorders C. Wright (scottdwright@gmail.com)*, M. Diener, L. Dunn & S. Wright *University of Utah, US Aim: The aim of this presentation is to examine how the use of technology can enhance inter-generational connections for high functioning children with autism spectrum disorders (ASD). Method: We used a qualitative design to examine inter-generational relationships facilitated by an intervention employing Google SketchUp, a freeware 3D design program. Seven high-functioning boys (ages 817) with ASD participated in computer workshops. We capitalized on the boys strengths in visual-spatial skills and problem solving within an interactive face-to-face setting. Our interdisciplinary team structured the workshops to facilitate computer skill development as well as social interaction and peer mentoring. Qualitative analysis involved thematic analysis of transcripts from parent and grandparent focus groups. Results: The two key themes that emerged were 1) reframing expectations (parental efcacy and creating a safe environment) and 2) building intergenerational bridges among parents, children, siblings and grandparents. Conclusions: These ndings indicate that technology can build on the strengths of children with ASD and promote social engagement of the children with their families and with each other. An early intervention based family support program at an on-campus Child Development Support Centre in Japan G.Toth (gtoth.kodomo@gmail.com)*,Y. Ozaki & M. Saito *Sagami Womens University, Japan Aim: The aim of the present study was to develop a creative program curriculum named Early Family Support Program (EFSP) for families with children who have developmental delays and/or have identied developmental disabilities at an on-campus Child Development Support Centre (CDSC) in Japan. Method: The staff of CDSC employed various methods (interviews, questionnaires and local service provider database check) to analyse and understand the specic needs of these local families and their children with developmental delays and/or disabilities. Results: The results of this study show a high demand for early interventionbased family programmes at the local community, with specic needs for family-oriented early intervention methods and professionals on the eld. This could be addressed through a specically developed childhood and family support service called EFSP by a local university based centre. Conclusions: The support system for children with special educational needs should employ a complex multimodal team of experts from different professional elds such as early childhood educators, clinical psychologists, speech-language pathologists, occupational therapists, and physiotherapists, among others. These professionals with their own eld of expertise will form a supporting-net, evaluate, assess, advise and care during the infant and early childhood period.
Families
Symposium: Intervention issues in the early years for students with autism and intellectual disability (continued) Mothers of children with an intellectual disability: Universal breadwinner model vs universal caregiver model Y.-C. Chou (choucyc@ym.edu.tw)* & T. Krger *Institute of Health and Welfare Policy, National YangMing University, Taipei, Taiwan Aim: According to Nancy Fraser (2000), a universal caregiver model is more progressive for gender equity than universal breadwinner and caregiver-parity models. The universal breadwinner model means that both parents are employed; while the universal caregiving model implies that the fathers hours of caregiving are equal or higher to those of the mother. This study aims to examine the hypothesis that the universal caregiver model would have more positive effects than the universal breadwinner model on the quality of life of mothers of children with intellectual disabilities (ID). Method: A face-to-face interview survey was conducted in 2011 in Hsinchu area of Taiwan with 876 working-age mothers of a child with ID, including 574 mothers living with a husband. Results: Mothers from the dual breadwinner group were more likely to have a higher level of QoL than mothers who were not breadwinners, whose husbands were not breadwinners or who came from couples without a breadwinner. However, the difference in mothers QoL between the two groups universal breadwinners and universal caregivers was not signicant. Thus, the hypothesis was not supported. Conclusions: The hypothesis and the models require further elaboration (e.g. time might not be the only/best indicator to measure universal caregiving).
What should I do now? Exploring family roles and relationships when a child has a disability- The grandparents perspective S. Woodbridge (s.woodbridge@grifth.edu.au)* & J. Clapton *School of Human Services and Social Work, Grifth University, Queensland, Australia Aim: Through listening to the grandparents perspective, this study sought to identify whether the roles and relationships grandparents had with their grandchild with a disability were somehow different to those they had with their other grandchildren and their wider family. Method: Interviews were conducted with a total of 22 grandmothers and grandfathers who had at least one grandchild with a disability, aged under the age of 17 years. The childrens disabilities included De Georges Syndrome, spina bifda, autism, and cerebral palsy. Results: The expectations, perceptions, and experiences of the grandparents were openly explored. These provided important insight into the challenges which had arisen for them and for their families. These challenges changed the nature of their identity and roles as a grandparent, and in some cases their role within the wider family and community. Grandparents used their prior knowledge and coping skills, to enhance the quality of life of their grandchild and provide unconditional love and support for their own child. Conclusions: Grandparenting a child with a disability has been described as a roller coaster ride of emotions. However, despite this journey, this paper will identify the important contribution grandparents make to the lives of their grandchildren including those with disabilities.

Symposium: Mindfulness-based stress reduction: Introducing the world of Zen to I/DD Mindfulness-Based Stress Reduction: Overall ndings from the Parent-Stress Intervention Project (PSIP) E. Dykens (elisabeth.dykens@vanderbilt.edu)* *Vanderbilt Kennedy Center Vanderbilt University, Nashville, Tenessee, US Aim: Parents of children with intellectual and developmental disabilities (I/DD) experience more depression, anxiety, and stress than parents of typically-developing children. Parent group interventions benet these parents but do not directly treat stress or depressive symptoms. Mindfulness Based Stress Reduction (MBSR), on the other hand, is an efcacious intervention known to reduce anxiety and depression. Method: This comparativeness effectiveness study was conducted with 287 parents of offspring with I/DD who were randomly assigned to one of two groups: MBSR versus Positive Parenting, focused on strengths and healthy adult development. Parents completed questionnaires related to depression, anxiety, stress, health, and life satisfaction during the 6-week treatment and up to 6 months post-treatment. Results: Participation in either PP or MBSR led to improved parental outcomes. Parents participating in MBSR, however, displayed more rapid, robust and signicant decreases in depression, anxiety, and stress, as well as improved sleep and health. Conclusions: The positive public health impact of reducing stress in parents of children with I/DD is only now being appreciated, both for parents and offspring. Findings will be discussed in relation to parental age, child diagnosis, income, and other life stressors.
Families
Symposium: Mindfulness-based stress reduction: Introducing the world of Zen to I/DD (continued) MBSR: Mental health outcomes for mothers attending with a spouse versus mothers attending alone M. H. Fisher (marisa.sher@vanderbilt.edu)* & E. M. Dykens *Vanderbilt Kennedy Center Vanderbilt University, Nashville, Tenessee, US Aim: To address increased depression, anxiety, and stress experienced by mothers of children with intellectual and developmental disabilities (I/DD), the effectiveness of Mindfulness-Based Stress Reduction (MBSR) was compared to a conventional parent support group (PP). Method: Data were drawn from a larger sample to compare mothers who attended with a spouse to mothers who attended alone on measures of depression, anxiety, parental stress, and life satisfaction. Results: Post-intervention, mothers attending treatment alone scored signicantly lower on depression compared to mothers attending with a spouse. Depression, anxiety, and stress scores signicantly reduced over time for mothers attending with a spouse and attending alone. There were no interaction effects for whether the mother attended with a spouse or attended sessions alone. Life satisfaction increased for both groups over time; yet, compared to mothers who attended alone, mothers who attended with a spouse had signicantly higher mean scores from T1 to T10. Conclusions: Mothers beneted from both interventions, whether they attended sessions alone or with a spouse. Data collection up to 6 months post-treatment is currently being completed and higher-level analyses will be presented.
Mindfulness Based Stress Reduction in Williams syndrome MBSR: Mental health outcomes for parents of children with autism spectrum disorders and other I/DD conditions N. Miodrag (nancy.miodrag@vanderbilt.edu)* & E. M. Dykens *Vanderbilt Kennedy Center Vanderbilt University, Nashville, Tenessee, US Aim: Parents of children with intellectual and developmental disabilities (I/DD) report high rates of stress and mental health problems. MindfulnessBased Stress Reduction (MBSR) is an empirically-based program (KabatZinn, 1990) that has yet to be evaluated in this population. Method: 287 parents of children with I/DD were randomly assigned to a 6-week MBSR or Positive Parenting (PP) treatment. Parents of children with ASD and other I/DD were compared on depression, anxiety, stress, and life satisfaction at the beginning, end, and post-treatment. Results: Two-way ANOVAs examined the effect of treatment and diagnosis on depression, anxiety, stress, and life satisfaction. The PP group scored signicantly higher on depression and anxiety than the MBSR group, as did parents of children with ASD compared to I/DD. We found no signicant effects for stress or life satisfaction. Depression decreased signicantly from baseline to follow-up for ASD and I/DD for the MBSR group. Anxiety decreased from baseline to treatment completion and there was a trend towards signicance for increased life satisfaction. Levels of stress did not change. There were no signicant changes for the PP group. Conclusions: Stress reduction programs can signicantly improve psychological well-being in high-stressed families of children with ASD and other I/DD. M. D. Lense (Miriam.Lense@Vanderbilt.edu)*, N. Miodrag & E. M. Dykens *Vanderbilt Kennedy Center Vanderbilt University, Nashville, Tenessee, US Aim: Mindfulness based stress reduction (MBSR) has been successfully used with medical, psychiatric, and healthy persons to reduce anxiety but has not been used in populations with developmental disabilities. Williams syndrome (WS) is a genetic neurodevelopmental disorder associated with high rates of anxiety and attention problems, and thus may benet from MBSR. Method: Adults with WS participated in MBSR activities for ve days, including meditation, deep breathing, Qigong, body scans, and lessons on mindfulness in everyday life. Participants self-rated their anxiety and provided saliva for cortisol (neuroendocrine stress hormone) and alpha-amylase (sAA; protein related to sympathetic nervous system). Parents completed the Child Behavior Checklist. Results: Cortisol declined each day in response to MBSR and was predicted by self-rated anxiety and CBCL Somatic subscale. sAA was higher during initial versus later sessions and was predicted by CBCL Attention scores. Conclusions: Results suggest differential relationships for these two physiological systems in response to MBSR in WS. Findings have important implications for the ability of people with WS to successfully engage in MBSR.

Symposium: Issues in the social and familial environments that may impact persons with intellectual disability Effect of dual diagnosis on adult siblings of people with intellectual disabilities J. Burbidge (5jgb@queensu.ca)* & P. Minnes *Queens University, Kingston, Ontario, Canada Aim: Adult siblings of people with intellectual disabilities (ID) report having closer sibling relationships, greater psychological well-being, and fewer symptoms of depression compared to adult siblings of individuals with mental illness (Seltzer et al., 1997; Taylor et al., 2008). This study explored the impact of having a sibling with a dual diagnosis (i.e., ID and mental illness) in adulthood. Method: Adults (N = 196) who have a sibling with an ID completed an online survey that asked about demographic characteristics, sibling relationships, psychological well-being, and depressive symptoms. Results: One-way ANOVAs were conducted to compare the following groups of participants: (1) sibling has an ID only; (2) sibling has an ID and diagnosed mental illness; and (3) sibling has an ID and symptoms of a mental illness without a formal diagnosis. The results showed that participants whose sibling had only an ID reported more positive feelings about their sibling, greater psychological well-being, and fewer symptoms of depression as compared to participants whose sibling had an ID and a diagnosed mental illness or symptoms of a mental illness without a formal diagnosis. Conclusions: The need for increased support for family members of individuals with dual diagnosis will be discussed.
Families
Symposium: Familial issues and support services for persons with ID Parental satisfaction with the quality of support in care facilities J. Luijkx (j.luijkx@rug.nl)*, A. ten Brug & C.Vlaskamp *Department of Special Needs Education and Child Care, University of Groningen, The Netherlands Aim: The aim of this study was to examine the perceived satisfaction of parents/legal guardians with the quality of support provided to persons with intellectual disabilities (ID) living in a care facility. Given the role and involvement of parents/legal guardians and the concept of family-centred care, they can both be seen as proxy for clients who cannot speak for themselves, but also as experts with their own view on care. Method: In close cooperation with parents, a questionnaire was developed to examine the satisfaction of parents/legal guardians (n = 935) with the quality of support provided, and to nd out which variables inuenced the opinion of parents/legal guardians. Results: Parents/legal guardians of persons with ID gave an average rate of 7.3 on the overall quality of support (SD: 1.2). Small proportions of explained variance of the predictor variables were found. Conclusions: Parents/legal guardians were mainly satised; a minority of 10% gave an unsatisfactory grade. Conclusions on the views of parents/legal guardians on the quality of support provided to clients with ID and variables inuencing the satisfaction of parents/legal guardians will be presented. Exploring collaboration between families of people with intellectual disabilities and those working in services D. Chadwick (d.chadwick@wlv.ac.uk)*, R. McConkey, A.Turner & E. Garcia Iriarte *School of Applied Sciences, University of Wolverhampton, England Aim: Many families in Ireland utilise services for themselves and their family member with intellectual disabilities, however many families are not satised with the quality and quantity of services they receive and often do not feel considered or respected by service staff. The aim of this study was to start a dialogue between families and services and explore how services and parents can work more collaboratively and harmoniously together. Method: University and family co-researchers worked together to develop the study and co-facilitate seven focus groups. These gathered information from service staff about the concerns families have raised and about the issues and concerns of those managing and providing services. People who took part included health and social care staff, quality and development staff, managers, chief executives and CEOs. Data was thematically analysed. Results: Suggested ways of involving, empowering and building better relationships with families were given, but services also acknowledged challenges to collaboration, including preexisting biases of families and services and cutbacks preventing services from adequately serving families. Conclusions: This study identies strategies to promote collaboration but we need to nd out more about unengaged families and resolving conicts between families and services in Ireland. Experiences of families with adult children with ID/DD S.Taub (staub@hsri.org)*, J. Bershadsky, S.Taub, J. Engler, C. R. Moseley & V. J. Bradley *Human Services Research Institute, Oregon, US Aim: The presenters will paint a comprehensive picture of experiences of parents and families of adult children with intellectual and developmental disabilities (ID/DD). We will describe perceptions of caregivers regarding access, choice and quality of services received by their child with ID/ DD. We will also discuss methodological issues in conducting this type of research. Method: Data came from recent annual National Core Indicators (NCI) Adult Family Survey. Information was collected from over 3,500 family members of adults with ID/DD living at home. Results: Some of the ndings include (but are not limited to) the following: only 60% of interviewees reported that they helped develop their care plan; less than 60% said that they always receive all services in the plan; fewer than half indicated that they always receive supports needed; and only 40% said that services are always within a reasonable distance from home. Furthermore, some of the same issues persist year after year the survey has been conducted. Conclusions: The presenters will discuss implications of the ndings and how the results can be used by providers, managers, and advocates to improve services for adults with ID/DD living in a family home and their family caregivers.
Parents perspectives of the tolerance concept Lj. Igric (ljiljana.igric@zg.htnet.hr)*, D. Cvitkovic, R. Fulgosi-Masnjak & N. Lisak *Faculty of Education and Rehabilitation Sciences, University of Zagreb, Zagreb, Croatia Aim: Since one of the major difculties in achieving inclusive education for students with disabilities are attitudes and values of those around them, there is a strong need for intervention programs that aim at social mechanisms of prejudice and stigmatization. Our project task included parents, children, and teachers in order to support educational inclusion in the Republic of Croatia. The aim of this qualitative study, which is a part of the project, was to gain an insight of parental concept of tolerance in mainstream schools. Method: Participants were mothers or fathers of regular primary school students, N = 8. Five of them were parents of typical students, while three were parents of children with disabilities. During the three-month period of the intervention program, students and their parents participated in focus groups in which the approach was based on Gestalt therapy. Data were obtained through qualitative analysis of audio recordings and observations. Results: Results showed that parents were well-acquainted with general concept of tolerance, but the way in which they practiced tolerance leaves the space for intervention. Conclusions: This research is a good foundation for providing additional motivation for all mainstreamed schools to work with parents in order to develop an inclusive school.

Symposium: Supporting families of persons with intellectual disabilities:The role of nurses We are always there . . . we never let the show down! Health issues facing mothers of children with intellectual disabilities L. Goddard (lgoddard@csu.edu.au)* *School of Nursing, Midwifery and Indigenous Health, Charles Sturt University, Australia Aim: The study aims to address the question What are the views of mothers and professionals regarding the health of families who have children with disabilities. Method: Key informant semi-structured interviews were held with 13 mothers who had children with disabilities of varying ages, and 5 disability professionals. These interviewers were taped, the data transcribed, and key themes identied through thematic analysis. Results: The mothers focused primarily on physical aspects of health, moving onto the build up of emotional health. The professionals identied mental health issues, risks factors, and physical health issues. Conclusions: Mothers caring for children with disabilities experience physical and emotional health issues which may become chronic and complex as the child grows. Developing interventions and strategies to increase the knowledge of nurses increases the capacity to both improve the health care needs of the families and the outcomes for their children. This study has resulted in a health mentoring project that involves undergraduate nursing students working in partnership with families with the aim of improving their health. The HELP Model: Undergraduate nursing students working with families of children with disabilities to improve their health L. Goddard (lgoddard@csu.edu.au)* *School of Nursing, Midwifery and Indigenous Health, Charles Sturt University, Australia Aim: To identify the key elements required to develop and implement a partnership health mentoring model for families with children who have disabilities, and to identify the impact on the families and nurse partners. Method: The cycles of action research have been used to plan, assess, act and reect on this project and to generate change. Purposive sampling attracted participants: 40 nursing students, 27 families, and two lecturers over three years. Results: A partnership approach resulted in the identication of health issues, family strengths, health goals, and the development of resources for each family. The evaluation indicated increased coping and wellness in families, and enhanced skills and condence in students working with families. Conclusions: The HELP Model is an approach that empowers families, nursing students, and lecturers in a mutually-benecial manner. It has the ability to build community capacity through education and access to resources. This model can be expanded to include the interdisciplinary health team and be extended to other universities. The invisibility of the nurses role with people who have intellectual disabilities and their families L. Goddard (lgoddard@csu.edu.au)*, K.Turnbull, R. Forbes & R. Weaver *Professional Association of Nurses in Developmental Disability Australia Inc., Australia Aim: To explore the role and education of nurses in the area of intellectual disability in Australia over the last 40 years. Method: To carry out a search strategy of articles from Australia and overseas. Results: The literature identies: the changes in service provision for people with intellectual disabilities, the key roles and strengths of nurses in this area, and the lack of education of undergraduate nurses today. It highlights the impact of these changes on people with intellectual disabilities and their families. Conclusions: Based on this review there is a need to identify the skills of nurses in the area of intellectual disabilities in Australia and to make them transparent to service providers and families. Strategies are required that inform educational facilities regarding the undergraduate and postgraduate education of nurses and other health professionals.
Families
Symposium: Parental issues and children with intellectual disability and autism spectrum disorder Children with ASD and parents: Parent perception of childs communication skills inuencing nature of interaction O. Hetzroni (hetzroni@edu.haifa.ac.il)* & R. Ohn *University of Haifa, Haifa, Israel Aim: Parents use child directed speech (CDS) that evolves as the child develops dependant on the cognitive, sensory, communicative, and linguistic abilities of the child as perceived by the parents. Children with autism spectrum disorders (ASD) differ in their communication and language development from typical children. The purpose of this study was to deepen understanding of the characteristics of parents behaviours during interactions with their children who have ASD. Method: Sixteen children with ASD participated in the study, ages 47. The research focused on the relations between parent perceptions regarding the childs language and communication abilities as perceived through interviews and a questionnaire, and their behaviours as presented during free play interactions with the child. Results and Conclusions: A preliminary analysis of parent-child interactions indicates that the parents who perceived their children as less able as communication partners tended to use directives, knowledge-testing questions, and frequently requested attention, objects or activities. They also initiated more parent initiations and showed higher ratio of parent utterances when compared to other interactions. The presentation will present the results of the study regarding CDS and mediation by parents of children with ASD. Progress on implementing the Scottish ID strategy:The perspectives of family carers L. Curtice (lisa.c@scld.co.uk)* & C.Trew *Scottish Consortium for Learning Disability (SCLD), Scotland Aim: To explore the experiences of families of people with intellectual disabilities in Scotland ten years after the publication of a national ID strategy. Method: A sample of 50 families from 4 areas of Scotland was identied through services and support groups. The sample was stratied to reect a range of carer experiences. Qualitative face-to face interviews focused on the cared-for person, caring experiences, and the carers views on whether services were changing. Framework analysis was used to identify themes and the results have been included in an evaluation report to inform a new national strategy. Results: The carers interviewed included: carers of people with complex needs, older carers, carers of children and young people, and carers from black and minority-ethnic communities. Families often found other families to be the best source of support; they would have liked someone to come and tell them what support was available. Most thought that the situation of people with intellectual disabilities had improved, but they did not think that their families were valued in Scottish society. Conclusions: The new strategy must acknowledge the lifelong responsibility of family carers and ensure that they know where to go for advice and support.

Symposium:Transition issues and persons with ID An autoethnography of transition J. Curran (curranjm@oneonta.edu)* *SUNY College at Oneonta, New York, US Aim: The extant literature on siblings of people with intellectual disability indicates there is a Down syndrome advantage when comparing the amount of contact and affective support and considering the degree of depression experienced by the sibling. In general, siblings of adults with Down syndrome do not experience as many negative consequences as those people whose siblings had autism or mental illness (Orsmond & Seltzer, 2007; Hodapp & Urbano, 2007; Taylor, Greenberg, Seltzer & Floyd, 2008). The advantage seems to diminish with the age of the siblings, as more aging issues come into play and sibling takes over more instrumental caregiving (Hodapp & Urbano, 2007). Information on adult siblings where one sibling has Down syndrome is relatively rare in the literature in developmental disabilities (Seltzer, Greenberg, Orsmond, & Lounds, 2005). Method: The data came from annual letters to friends and family, a journal kept by the author, and comments from friends and family. Results and Conclusions: Results of the research identify behaviours that support smooth transitions to new roles for both the author and adult with Down Syndrome, namely the use of ritual, social supports, agency support, and negotiated role shifts. Parent collaboration with educators and health professionals during preschool transition C. Chatenoud (chatenoud.celine@uqam.ca)*, M.Villeneuve, C. Dionne & P. Minnes *Universit du Qubec TroisRivires, Qubec, Canada Aim: Different service delivery approaches in health (e.g., familycentered model) and education practice (child-centred, family-allied model) inuence the nature of collaboration with parents of children with developmental disabilities (DD). Differences are prominent during transition from preschool services into school. This study explored the impact of service delivery approaches on professional collaboration with parents. Method: HELPS Inc is a Canadian research team focusing on health, education, and parent factors promoting the social inclusion of young children with DD. Canadian parents (n = 120) of children aged 3 to 6 years completed a survey about health services, educational supports and experiences of collaborating with providers. Results: Parent respondents reported diverse diagnoses, developmental and special education needs, and service contexts. Signicant difference in parent perception of collaboration with health providers and educators (p < .01) was found with parents reporting that health professionals encourage greater parent involvement and decision-making in their childs care. Parents reported successes and challenges in three key areas: obtaining resources, communication, and partnerships. Conclusions: Parent perception of collaboration with professionals is an important facilitator of transition to school for children with DD. The impact of service delivery approaches on this transition is considered along with facilitators of collaborative working. Partnerships between parents and teachers during early transitions of children with disabilities J. Neilands (judith.neilands@newcastle.edu.au)*, M. Arthur-Kelly, I. Dempsey & P. Foreman *University of Newcastle, Australia Aim: Agreed understandings between people, contexts, processes, and time are essential to successful transitions, because parents and teachers report discontinuities and mismatches in that process (Dunlop, 2003, Conway et al., 2003). There are mismatches in terminologies and shared meanings used by educators (Dunlop, 2003), and a need for the development of a process that protects children and parents from poor coordination practices between educational contexts (Fabian, 2002). Finding ways to ensure familiarity, continuity and good communication is essential (Margetts, 2000), with consistently applied standards involving developed relationships between teachers from each stage (Brostrom, 2000). An understanding of the complexity in each childs educational journey is sought by following parent/teacher partners across a time of transition from pre-school to school, comparing viewpoints, identifying barriers and recognising the contributions of all partners. Method: A Bronfenbrenner-based model has been successfully used as a framework in regular early childhood research (Bowes & Grace, 2009). A study of parent/teacher partners over two years (20122013) in Australia will ask parents and teachers to identify benecial processes and actions. Results and Conclusions: Early results will be discussed.
Families
Symposium: Involving and understanding the parental perspective in the care of persons with intellectual disability Conversations with parents of children with disability: Improving the diagnostic process J. Small (jacquels@chw.edu.au)*, E. Cassidy, K. Hamilton Chan & M. Cominguez *Disability Specialist Unit, Sydney Childrens Hospitals Network (Westmead), Australia Aim: To improve the journey through diagnosis for parents of children with intellectual disability (ID) by investigating the roles, experiences, and needs of early intervention (EI) staff. Method: During 2009, ve focus groups of 28 participants, including EI staff, disability therapists, and school teachers, explored in depth key themes relevant to the diagnostic process. Eleven early intervention services located in Sydney were surveyed to explore existing policies, practices, and perceived needs in relation to staff practice through diagnosis. Results: Early intervention staff report that they play an important role in the provision of support for families before, during, and for at least 2 months after diagnostic assessment (DA). Signicant concerns relate to the stressful nature of DA, inconsistencies and confusing terminology, and their limited preparation for this role. Directors of EI agencies reported that 90% of agencies supported parents, yet only 36% had formal policies and little or no specic training had been undertaken. Conclusions: The process of diagnosis is a critically important one for parents of children with disabilities with lifelong implications. Improved adaption to the diagnosis may be achieved by more effective interagency collaboration, education and skill development of EI professionals. Hopes for the future: the impact of caring for a family member with an ID who is ageing P. McCallion (mcclion@albany.edu)*, F. Sherrin, E. Burke & M. McCarron *Intellectual disability supplement to the Irish Longitudinal Study of Ageing in Ireland, Ireland Aim: To identify the views and experiences of family carers of people with an intellectual disability (ID) as they age. Method: A carers selfcompletion questionnaire was offered to family members as an optional element of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing. Forty-one quantitative and qualitative items addressed support required and challenges and difculties in caring for a family member with ID. Results: Of the carers who responded, 24% were ageing parents and 30% also cared for someone else. The greatest amount of support offered was to address IADL and ADL needs and 40% reported that caring needs had meant cutting back on hours of work or giving up an outside job. There were also implications for the carers own health and social participation. Conclusions: Programmes designed for people with ID and their families must recognize that caring for a member of ones family who has an ID is reported to be challenging but must also be responsive to carer beliefs that caring has its own rewards. Mothers of CSN: Concepts and sentiments of their childrens future F. J. Ramos (relady547@yahoo.com)* *Undergraduate and Graduate School, Leyte Normal University, Leyte, Phillipines Aim: This study investigated mothers concepts and sentiments about the future of their children with special needs (CSN). The respondents were 20 mothers of children with Down syndrome and other disabilities in Manila, Philippines. The study explored their conceptualizations of the kind of future that awaits their CSN and sentiments regarding their childrens future. Method: The study used in-depth open-ended interviews to extract the parents narratives. The respondents narratives were analyzed using the Colaizzi Method to reveal the themes and subthemes within their experience of raising a CSN in relation to their childrens future. Results: The study revealed themes from the mothers narratives concerning the future of their CSN: a) the type of opportunities available for the CSN; b) their visualization of the CSNs future; c) the skills that can be developed to build the future of the CSN; and d) the parents preparation for the future of their CSN. The parents sentiments about the future of their CSN consisted of anxieties and fears for the future, as well as desires related to the future of their CSN. Conclusions: The results provide a basis for improvements in intervention services and assistance for families of children with special needs.

Posters: Family-centred practice:Theoretical understandings and practical applications E. Gardiner (emily_gardiner@sfu.ca)* & C. French *Simon Fraser University, British Columbia, Canada Aim: Despite a national focus on promoting healthy child development and a call to engage with families in family-centred ways, there is a paucity of Canadian literature examining how involved professionals conceptualize their role. This poster will present Nova Scotian early interventionists perceptions regarding family-centred theory and application. Nova Scotia serves as an excellent opportunity for exploration as its early intervention programs span both rural and urban regions and are structured under uniform provincial guidelines. Method: Ten early interventionists from two urban programs were individually interviewed. Participants were asked to describe the family-centred philosophy and to share how it informed their practice. Results: Participants descriptions of the family-centred philosophy closely adhered to the central tenets identied in the literature. Although most supported the family-as-expert approach, one individual communicated a conicting point of view. Participants reected on the disconnect that can occur between families early intervention expectations and actual experiences. Individuals suggested that clearly explaining program parameters can help to ameliorate such challenges. Conclusions: The ndings remind us of the necessity of seeking families input regarding early intervention expectations, experiences, and desires for change, and highlight professionals role in engaging in dialogue with families to identify and address service delivery gaps. Family quality of life of elderly persons with intellectual disabilities L. E. Gomez (gomezlaura@uniovi.es)*, A. Rodrguez, M. A. y Verdugo, P. Navas & B. Arias *Universidad de Oviedo, Spain Aim: This research focuses on perceived needs and family quality of life that is helpful for social policies planning. The main goal is to analyse the needs of families with a member over 40 years old, with intellectual disabilities. Method: A total of 593 Family Quality of Life Surveys (Summers et al., 2005; Hoffman et al., 2006; Verdugo, Sainz, & RodriguezAguilella, 2009) were applied in Spain, and 12 focus groups were carried out with parents and siblings. A mixed design was used involving both qualitative and quantitative methodology. Descriptive and inferential analyses were carried out in the quantitative phase. NUDIST 9.0 was used to analyse recordings of focus groups in the qualitative phase. Results: Results showed that Family Interaction, Health and Security, and Parental Role domains have a positive inuence on family quality of life. However, the domains related to supports (Family resources and Support of the family member with a disability) indicated a low satisfaction. They also showed concern for the future and siblings supports. Conclusions: Supports for families are not adapted to the needs of elderly people with intellectual disabilities. There is necessity for social policy programmes to invest more in resources to support their special needs. The experience of family crisis and physical health of mothers of children with ASD J. MacMullin (jenmacm@yorku.ca)* & J. A. Weiss *York University, Toronto, Ontario, Canada Aim: Mothers of children with autism spectrum disorders (ASD) often experience high levels of distress, which can culminate in an experience of crisis. Research indicates that crisis is signicantly correlated with mental health issues (Weiss & Lunsky, 2011), but it is unknown whether the experience of crisis is related to maternal ratings of physical health. The aim of the present study is to investigate the relationship between crisis and the overall physical health of mothers of children with ASD. It is hypothesized that crisis will be a signicant predictor of lower levels of physical health in mothers. Method: Mothers of children diagnosed with ASD between the ages of 4 and 21 years old (108 boys and 24 girls; age M = 11.71, SD = 4.64) completed an online survey. Child diagnoses included Asperger syndrome (32.1%), PDD-NOS (19.8%), autism (46.6%), and other diagnoses. Results: Preliminary results indicated that maternal rating of physical health were signicantly correlated with crisis, r = .36, p < .001. Regression analyses will be conducted to determine whether crisis predicts lower levels of physical health in mothers, after taking into account parent age and child behaviour problems. Conclusions: The implications of an experience of crisis on maternal physical health will be discussed. Posters:
Families
Beyond an act moving carer recognition from government awareness to accredited qualications C. Morris (cmorris@responsetraining.com.au)* & K. Rock *Response Employment and Training, Australia Aim: For people with an intellectual disability, it is their families as carers who provide the primary focus of support. It is the carers who know and do, and therein lies a world of potential. Both research and the Australian Carer Recognition Act 2010 acknowledges the economic contribution of carers, and the National Carer Strategy gives effect to its principles. Method: Our project aims to move this acknowledgement of carers from just consideration to equal partners, by providing them with a recognition pathway to accredited qualications under the Australian Qualication Framework (AQF). The project uses the Group Recognition process, which is a validated Recognition of Prior Learning (RPL) assessment tool. Results and Conclusions: Our Carers Recognition Project embraces both the Act and the National Strategy that states Carers should be considered as partners with other providers in the provision of care, acknowledging the unique knowledge and experience of carers. A place where its ok to have some peculiar things at home: Siblings denition of sibling support T. Moyson (tinneke.moyson@hogent.be)*, D. Levrouw & H. Roeyers *Ghent University College, Ghent, Belgium Aim: There is a growing conviction among practitioners regarding the value of support programmes for siblings of children with an intellectual disability. In Belgium, some sibling support programmes seem to be successful, while other projects have died out. If we want siblings to participate in these programmes, it is obvious that they must rst meet the siblings expectations. Therefore, the aim of this study was to investigate how siblings describe good sibling support. Method: Following a qualitative research design, this study purposively sampled siblings who are still participating or have participated in sibling support programmes. Forty-one (41) siblings were interviewed. Following the principles of grounded theory, there was an interplay between data collection and data analysis. Results: The metaphor of following a recipe to bake a cake turned out to be appropriate to explain the complexity of organizing sibling support. Once several conditions have been fullled, support programmes help siblings to feel acknowledged, which assists them to maximize their unique chances and to minimize their unique needs. Conclusions: Family support can only be successful if all the family members receive the support they need. The results of this study give practitioners handles to initiate and/or to evaluate sibling support. Experience of carers of individuals affected by FASD in the UK R. Mukherjee (leopold.curfs@maastrichtuniversity.nl)*, E. Wray, L. Curfs & S. Hollins *FASD Specialist Behaviour Clinic, Surrey and Borders Partnership NHS Foundation Trust, England, UK Aim: Information from other countries suggests that carers of individuals with FASD struggle with support and management of these children. In our study we explored if this was the same in the United Kingdom. Method: Subjects were recruited by self-selection in response to advertising via FASD support agencies. Focus groups and the Parental Stress Index (PSI) questionnaire were completed. Focus groups were analysed thematically. Frequency data and multivariate analysis of PSI data were applied. Results: Sixty-six (66) people attended the education sessions, and three focus groups were held with 10 people in each group. PSI data showed that child factors had a greater impact on the overall stress than parental factors. Ageing and a lack of competence was identied as main inuence on coping. Further, carers reported that due to a lack of knowledge in professionals they were offered limited support and often blamed as bad parents. Conclusions: The UK situation has many similarities with the situation in other countries. The UK kinship adoption practice needs to be re-evaluated for children with FASD.

Posters: Parents, adults with intellectual disabilities and care: Methodological and theoretical reections R. Saaltink (0rrs@queensu.ca)* *Queens University, Kingston, Ontario, Canada Aim: The current study is the third phase of a project titled Parents Seeking Adult Services, which aims to describe family characteristics, coping strategies, and predictors of stress and resilience for families who are on the waiting list to receive Developmental Services in Ontario. This poster will describe methodological and theoretical approaches that can facilitate an understanding of why certain formal or informal supports are effective for certain families. Method: A review of the literature was conducted on caring and families that include an adult with an intellectual disability. Methodological and theoretical approaches that could address current gaps or limitations were explored. Results: Research has garnered contradictory or inconclusive ndings in terms of coping and outcomes for carers in general as well as for carers from minority or diverse social positions. Parents and adults with intellectual or developmental disabilities are often considered separately; some researchers have suggested that a more holistic approach is needed. Conclusions: A narrative, life story approach informed by critical disability and feminist theorizations of disability, care and dependency can help explain cultural, policy and structural inuences that interact with familial situations to explore with detail and complexity why certain supports are helpful. Posters:
Families
Investigating relinquishment of care from the perspective of the family Preliminary ndings M.Vassos (m.vassos@uq.edu.au)*, K. Nankervis & A. Rosewarne *Centre of Excellence for Behaviour Support, University of Queensland, Ipswich, Queensland, Australia Aim: When relinquishment of care occurs within the disability sector, the family caring for a person with a disability makes the decision to no longer care for their family member on a permanent basis. Previous research has investigated the potential factors associated with relinquishment of care from the perspective of secondary sources (e.g., support staff and case managers) however the perspective of the family has not directly been sought. The aim of this poster is to present preliminary ndings from a study that directly investigates the experiences of families who have relinquished care of their family member with a disability. Method: The research asked parents and carers to volunteer to participate in a face-toface or telephone interview, or complete a written survey (either online or paper) that asked questions exploring the familys relinquishment experience. Results: Results around: (1) the factors that lead to families relinquishing care; (2) the families experiences with disability services prior to and after relinquishment; and, (3) quality of life outcomes for the family member and the family after relinquishment, will be highlighted. Conclusions: Implications for policy and disability services stemming from the results will be highlighted and discussed.
Preliminary study of assessment scales for parents/caregivers of children with developmental disabilities G.Toth (gtoth.kodomo@gmail.com)*,Y. Ozaki & M. Saito *Sagami Womens University, Japan Aim: The aim of this study was to investigate assessment scales for parents/ caregivers of children with developmental disabilities by making a survey of various questionnaires and developing a family support program. Method: Parents/caregivers of neurotypical children and children with developmental disabilities were asked to complete various questionnaires, and were interviewed by a clinical psychologist. Later the results of these questionnaires were analysed using the SPSS statistical software package. Results: The subjects were 625 parents/caregivers of neurotypical children (23 years old) and 18 parents/caregivers of children with developmental disabilities (23 years old). They were asked to complete various questionnaires related to 5 main subjects: (1) child-rearing anxiety; (2) disability acceptance; (3) nurturing attitude; (4) intersubjectivity; and (5) personality factors. The caregivers of children with developmental disabilities showed signicantly higher scores on child-rearing anxiety, and signicantly lower scores on disability acceptance and intersubjectivity than caregivers of neurotypical children. Conclusions: Child-rearing is an everyday activity, and a triing matter can become the cause of anxiety over child-rearing especially in parents/caregivers of children with developmental disabilities. The signicantly lower scores on disability acceptance and intersubjectivity are also important factors and should be addressed carefully.

Symposium:The environment of children of parents with ID The environment and context for infants with mothers with cognitive limitations G. Hindmarsh (gabrielle.hindmarsh@sydney.edu.au)*, G. Llewellyn & E. Emerson *The University of Sydney, Australia Aim: To compare the environment and context of infants of mothers with and without cognitive limitations in terms of maternal health, sociodemographics and support systems. Method: This paper will report ndings from a secondary analysis of data from Wave 1 of the United Kingdoms Millennium Cohort Study (MCS). The sample is drawn from all live births in the United Kingdom over a 12 month period. Wave 1 data was collected when the child was 9 months of age and recorded in-depth information of maternal health, household structure, neighbourhood, as well as the social and economic background of the family into which the children were born. Results: Seventy-four of the 18,198 mothers (0.4%) were identied as having a cognitive limitation. Educational attainment and self-identication along with numeracy and literacy skills were examined to identify cognitive limitation. Comparisons between maternal health, the household and neighbourhood and various family support systems are currently underway. Conclusions: The environment in which a child lives has an inuence on their developmental outcomes. This paper will describe and compare the environments for infants with mothers with and without cognitive limitations. A review of research about children of parents with intellectual disabilities S. Collings (susan.collings@gmail.com)*, G. Llewellyn & R. Grace *Australian Family and Disability Studies Research Collaboration, University of Sydney, Australia Aim: This paper reports on the ndings of a literature review about children of parents with intellectual disabilities. Method: A database and reference search was undertaken from March 2010 to March 2011 resulting in 26 studies about life experiences or child outcomes. Results: Two groups of studies were identied. The rst investigated an association between parental intellectual disability and child outcomes for children from highly disadvantaged and chaotic families. Some studies suggest these children will be disadvantaged by their parents low intellectual capacity while others suggest that, once other factors are taken into account, development approaches population norms. Court and child protection le studies demonstrate that these children are at high risk of removal from parental care. A second group of studies explored narrative, generally retrospective, accounts of childhood to understand life from a childs perspective. Studies report that social exclusion, bullying, and stigma are common experiences. Conclusions: Research has been preoccupied with childrens developmental outcomes but little is known about their lived experience. Despite representing 85% of the literature, these studies have not reached a consensus about likely developmental, academic, or behavioural outcomes. Studies have generally included high risk samples, mothers rather than fathers, and children under ve. What about the child? H. Reinders (js.reinders@th.vu.nl)* & J. S. Reinders *Bernard Lievegoed Chair,VU University Amsterdam, Netherlands Aim: To discuss the perceived conict of interest between parents with intellectual disability (ID) and their children. Method: Philosophical analysis. Results: Ongoing debate on parenting with ID in The Netherlands suggests a growing consensus about the claim to equal citizenship as a normative ethical framework for the discussion. There is one type of ethical concern, however, that seems to trump all others, which is the interest of children of parents with ID. Notwithstanding the importance assigned to empowerment, citizenship, and human rights, the recurring question remains: What about the child? The persistence of this question is explained by uncovering the underlying moral presupposition: there is no reciprocal moral relationship between parents and their children that can provide a basis for balancing mutual interests. Childrens moral obligations towards their parents are grounded by parents prior obligations towards their children, not the other way around. Conclusion: From the perspective of ethics, the rights of parents and children are not mutually correlated.
Parenting with an Intellectual Disability
Symposium: Children of parents with ID I Children born to women with intellectual disabilities: 5-year incidence in a Swedish county I. Weiber (ingrid.weiber@bth.se)*, J. Berglund, P.-A.Tengland & M. Eklund *School of Health Science, Blekinge Institute of Technology, Karlskrona, Sweden Aim: The aim of this study was to investigate the ve-year incidence of children born to women with intellectual disabilities (ID) in a county in Sweden. Method: In the county of Blekinge, women born between 1975 and 1989 were identied from school registers for children and adolescents with ID. The womens personal identication numbers were linked and matched with the Swedish Medical Birth Register. Results: In 2010, a total of 98 women with ID were identied from the school registers. The Medical Birth Register showed that nine of these women had given birth to children: one woman gave birth to two children, and eight women had had one child each. The ten children were born between 2004 and 2008. Conclusion: Approximately 2.12 per thousand children are born per year to women with intellectual disabilities according to the incidence rate calculated as a result of the present study. For the whole of Sweden that rate indicates an incidence of approximately 225 children each year. The prevalence of children (aged 018 years) being born to women with intellectual disabilities is, on the basis of this study, estimated at about 4,050. Parents with intellectual disability who have school-age children: A review of the literature on their strengths and support needs C. Wade (healthystart@parentingrc.org.au)*, S. Bennetts & S. Collings *Parenting Research Centre,Victoria, Australia Aim: While there is an established body of literature on the parenting tasks, challenges, and support needs for the general parenting population raising older children, little is known about parents with intellectual disabilities who have older children. Method: The present review will explore the extent to which the parenting with intellectual disability literature has considered the support and information needs of parents who have older children. Results: Findings from the review reveal that parents with intellectual disabilities raising school-aged children share the same concerns as other parents in the community, although their prior learning experiences, contact with schools, and exposure to the stigma frequently associated with disability, creates a unique, yet variable experience of parenting for people with intellectual disability. There are a number of gaps and methodological limitations within the available research, which can be viewed as opportunities for future research. Conclusions: Conclusions from the review will be discussed in light of the implications for future research, service delivery, resource development, and policy initiatives for parents with intellectual disability who are raising school-age children. The effect of VIPP-LD intervention with parents with intellectual disabilities on their childrens behaviour M. W. Hodes (M.W.Hodes@vu.nl)*, S. Kef, H. M. Meppelder & C. Schuengel *Department of Clinical Child and Family Studies,VU Amsterdam, Netherlands Aim: Children of parents with ID are more vulnerable for developing behaviour problems and emotional problems. Research suggests that these children will be more susceptible to increased levels of anxiety, depression, fear, and changes in behavioural and social patterns. This study tested the effects of an evidence-based parent support program (VIPP-LD) on their childrens behaviour. Method: Videofeedback Intervention for Positive Parenting Learning Difculties (VIPP-LD) involved 15 home visits, centered around videotaped parent-child interactions, supporting the development of parenting skills, and reinforcing their application. A randomized clinical trial is in its nal stages of completion, based on 80 families recruited from care organisations. Children involved in the intervention are between 1 and 7 years. Child behaviour problems, internalized as well as externalized, are assessed by pre- and post-test measurements just after nishing the VIPP-LD Intervention, using the TRF of the CBCL. Results and Conclusions: The results of this study indicated that children of parents with ID show increased levels of behaviour problems, particularly externalizing behaviour problems. Shortterm effects based on comparison of the pre- and post-test measures for the experimental and control group will be presented.

Symposium: Children of parents with ID II The birth and 9 month developmental outcomes of children with mothers with and without cognitive limitations G. Hindmarsh (gabrielle.hindmarsh@sydney.edu.au)*, E. Emerson & G. Llewellyn *The University of Sydney, Australia Aim: To compare the maternal pregnancy health, birth outcomes and 9 month developmental outcomes of mothers with and without cognitive limitations and their children. Method: This paper will report ndings from a secondary analysis of data from Wave 1 of the United Kingdoms Millennium Cohort Study (MCS). The sample is drawn from all live births in the United Kingdom over a 12 month period. Wave 1 data was collected when the child was 9 months of age and recorded the circumstances of pregnancy and birth, the rst nine months of life and the social and economic background of the family into which the children were born. Results: Seventy-four of the 18,198 mothers (0.4%), with singleton births, were identied as having a cognitive limitation. Educational attainment, self-identication along with numeracy and literacy skills were examined to identify cognitive limitation. Comparisons between mothers with and without cognitive limitations across pregnancy health and birth and 9 month developmental outcomes are currently underway. Conclusions: This paper will identify, if any, differences between start to life variables for children born to mothers with and without cognitive limitations utilising a large population dataset. What the children say about their social world S. Collings (susan.collings@gmail.com)*, G. Llewellyn & R. Grace *Australian Family and Disability Studies Research Collaboration, University of Sydney, Australia Aim: To report on a qualitative study underway in Australia to understand how children of parents with intellectual disabilities perceive their social world. Few studies have examined the life experiences of this group of children but one study found they can face stigma due to maternal intellectual disability and two studies reported that bullying and ostracism were common for school-aged children. Mothers with intellectual disabilities are at risk of social isolation which may affect their mental health and, indirectly, their parenting capacity but the effect it has on their childrens social lives is unknown. The study is exploring the social context of children of parents with intellectual disabilities from their own perspective. Method: Over one year, seven primary school-aged children living with mothers with intellectual disabilities are taking part in at least two semi-structured interviews. Using photography and drawing, they are sharing their views and beliefs about their family, school, and community life. Content analysis will be used to understand major inuences in childrens social lives. Results and Conclusions: The presentation will report the results to date, playing particular attention to the role played by parents, friends, extended family, neighbours and service providers in shaping the social lives of children. Behavioural and mental health concerns about children: Findings from the literature G. Llewellyn (gwynnyth.llewellyn@sydney.edu.au)*, G. Hindmarsh & S. Collings *The University of Sydney, Australia Aim: To present ndings from the literature on the behavioural and mental health concerns about children and young people of parents with intellectual disabilities. Method: An analysis of the literature on the behavioural and mental health concerns, specically drawing attention to the inuence of family and environmental contexts, was done to determine whether these factors have been taken into account in understanding child outcomes. This work is part of a broader program of research aiming to identify the socio-economic and environmental determinants of developmental outcomes for children and young people with impairments or living in families with parents and/or siblings with impairments. Results: Currently in policy and practice this group of children are considered an atrisk. Typically the standard applied is drawn from either clinical populations or broad based population data. This paper will identify, if any, differences between the behavioural and mental health concerns of children and young people with parents with intellectual disabilities and their peers through analysis of existing literature. Conclusions: An empirical analysis of current knowledge will identify knowledge gaps to recommend appropriate future research and evidence based policy to support these children and young people and their families.
Symposium: Parents with ID:Their perspectives Family support is a human right But what happens in reality? I. Ahlund (iren.ahlund@fub.se)* & T. Follin *FUB:s forskningsstiftelse ala, Stockholm, Sweden Aim: The UN Convention on the Rights of Persons with Disabilities afrms the rights of persons with disabilities to marry and found a family. Further, Article 23 states parties are bound to take effective action and appropriate measures to eliminate discrimination . . . and render appropriate assistance to persons with disabilities in the performance of their child-rearing responsibilities. But what happens in real life? Method: Presentation of a project where the parents themselves get together to learn about their rights and strengthen themelves in their right to get support that is compatible with their needs and make decision makers listen and respect their demands. Results and Conclusions: The project has a special focus on fathers with intellectual disorders (ID), and two project workers, one parent with ID, and one researcher work side by side. A method called Meetings of Perspectives is a focus group where people with different perspectives meet and get a deeper understanding, or nd a solution to a problem that is commonly known for both groups. Narratives of mothers with intellectual disabilities whose children have been compulsorily removed R. Mayes (rachel.mayes@sydney.edu.au)* & G. Llewellyn *Faculty of Health Sciences, University of Sydney, Australia Aim: The children of mothers with intellectual disabilities are frequently removed by statutory child protection authorities. Despite this being a common experience for this group, little theoretical or empirical work has explored mothers perspectives on this. Feelings of grief and powerlessness over the child protection system have been reported, but no study has understood how mothers describe their daily lives following the removal of their children. Method: This study explored the daily life narratives of seven mothers with intellectual disabilities following the involuntary removal of their children. Results: For most mothers, having a child removed was not a one-off experience around which a single story was told. All mothers daily lives were characterized by engagement with their children in care. Three distinct narratives emerged from the mothers stories; however mothers could tell different narratives in relation to different children. Conclusions: The multiple narratives told by mothers suggest that their support needs differ from each other, and over time. Further research is needed to determine how mothers with intellectual disabilities might best be supported following involuntary removal of their children. We are a family M. Spencer (mspencer@idrs.org.au)*, A. White, L. White, E. White, M. P. Fogarty, R. Strike, C. Strike, B. Strike, C. Chahine & K. Horne *Intellectual Disability Rights Service, Sydney Australia Aim: Much of the story on parenting with intellectual disability has been told by others for us and on behalf of us. The aim of this presentation is to provide hope and encouragement to others by putting ourselves out there as three families at different stages of the parenting journey but all doing well. Method: Through shared reection, video, and drawings we will tell our story and identify what each of us in our own way understand about intellectual disability, parenting and being a family. Results and Conclusions: This presentation will give parents, their children and other family members voice in the discussion on parenting with intellectual disability. It will challenge stereotypes and highlight through praxis what works, and why.

Symposium: Parents with ID: Interagency collaboration Professionals experiences of supporting families where a parent has an intellectual disability I. Weiber (ingrid.weiber@bth.se)*, M. Eklund & P.-A.Tengland *School of Health Science, Blekinge Institute of Technology, Karlskrona, Sweden Aim: The aim of this study was to describe the experiences of professionals supporting families where a parent had an intellectual disability (ID). Method: The professionals were identied by purposive sampling. Seven focus groups were formed, including 29 professionals working for different welfare administrations on the county and municipality levels in the south of Sweden. The duration of the interviews varied between 45 minutes and 1 hour 45 minutes. The interviews were transcribed verbatim and were analyzed using qualitative content analysis. Results: The analyses are ongoing and the preliminary results are as follows: the professionals supported the families on the basis of strategies each administrative unit had developed; a need for more frequent cooperation between the units was highlighted; facilitating factors for successful support were parental ability and willingness to follow advice and support measures; aggravating factors were lack of cooperation and lack of adequate strategies among the various kinds of professionals involved, and parental fear that the social authorities would not let them keep the child. Conclusion: A tentative conclusion is that collaboration around these families is necessary and should include professionals from different areas in order to achieve adequate support.
Symposium: Parents with ID: Interagency collaboration (continued) Inter-agency collaboration and its impact on parenting and family outcome in families headed by parents with intellectual disabilities L. Pacheco (lpacheco@ssss.gouv.qc.ca)* & M. Aunos *West Montreal Readaptation Center, University of Alberta, Rehabilitative Medicine, Canada Aim: Families headed by parents with intellectual disabilities (ID) usually have multiple agencies supporting them. Inter-agency collaboration has been viewed as an important factor for family preservation, however little is known about the different facets of this collaboration and its impact in the lives of these families. The aim of the study was to examine the impact of inter-agency collaboration within the lives of parents with an ID. Method: A case by case analysis was conducted on the records of 20 parents with an ID who receive services from a Readaptation Center for persons with intellectual disabilities and youth protection agency. The following factors were reviewed in this study by using Feldmans model (2002) and partnership theory (Spath et al., 2008): attitudes of workers involved, collaboration between agencies, factors included in Feldmans model and outcomes (child removal, family preservation). Results: Preconceptions around parenting with an ID seems to have an impact on child outcomes. Negative attitudes of individual workers negatively impacts inter-agency collaboration. Parents with ID who experience a partnership between agencies seem to feel more supported within their parenting role. Conclusions: Based on the results of this study, recommendations will be made for service delivery and further research.
Practitioners perspectives on engaging and supporting fathers with learning difculties C. Wade (healthystart@parentingrc.org.au)*, S. Bennetts, C. Bent, & S. Malone *Parenting Research Centre,Victoria, Australia Aim: This study aims to explore practitioners perspectives about effective and ineffective supports for fathers with learning difculties, and barriers to their engagement in family services. Practitioners personal views of fathers with learning difculties capacity as parents are also examined. Methods: Face-to-face interviews were conducted with 14 family service practitioners across two Australian states. Transcripts were coded using NVivo9 for qualitative research. Inter-rater reliability was suitably high, with percentage agreement ranging from 78.85 to 100. Results: Strategies for supporting fathers with learning difculties were largely consistent with what the literature indicates is effective in supporting fathers in the general population (e.g. exible practice, incidental and informal contact, practical child-focused intervention). Practitioners reported using oneon-one or group support tailored to individual learning needs, and clear, concise, fun resources. The barriers identied were also consistent with the general parenting literature, but may have a greater impact on fathers with learning difculties (e.g. unfamiliarity with services, and previous negative experiences with a female-centred service system). Some practitioners expressed concern about the ability of fathers with learning difculties to parent adequately, indicating that negative stereotypes towards fathers with learning difculties exist within family services. Conclusions: Implications for best practice and policy are discussed. Promoting potential overcoming pessimism M. Spencer (mspencer@idrs.org.au)* & M. Sandler *Intellectual Disability Rights Service, Sydney, Australia Aim: This study focused on a program for parents with intellectual disability (ID) involved in care and protection matters to determine if it changed the outcome for these families. Method: Evaluation took the form of a case le audit, a survey of court users (magistrates, lawyers and care and protection workers), as well as semi-structured interviews with parents who accessed the program. Results: In matters in which the program offered strategic case management, there were positive outcomes for families. Most importantly, parents whether or not they retained custody of their children felt the program enabled them to participate in the process. In saying this, however, the evaluation highlighted a number of barriers such as systemic resistance, territorialism, and polarization of positions. Conclusions: The evaluation highlights the importance and value of providing parents with intellectual disabilities with specialist case management as well as the need for education and systemic accommodation within Child Protection practices and the Care and Protection jurisdiction.

Symposisum: Innovative programs supporting parenthood of persons with ID Using computers to provide practical information to enhance parenting skills W. Oldreive (warren.oldreive@berkshire.nhs.uk)* & M. Waight *Berkshire Healthcare NHS Foundation Trust, UK Aim: To introduce the format used to provide information that was required to enable independent parenting in a lady who was unable to read. Method: The study followed a case study format and included the following: (a) assessment pathway and ndings were summarised; (b) meetings were held with the individual to reach agreement on topics and discuss how the programs were developed; (c) programs and review criteria were introduced and (d) the concept of a program index was introduced. Results: The individual was able to access information on arrange of topics including (a) child development milestones, (b) child protection procedures, (c) adoption process, (d) practical skills required to help parenting (bottle feeding; how to change a nappy) and (e) advice on playing with the baby including nursery rhymes. Complex terms were dened and reports written. Conclusions: Computers enabled access to complex information on a range of topics which promoted inclusion, empowered the mother by supporting condence regarding practical skills and understanding of care proceedings.
Symposisum: Innovative programs supporting parenthood of persons with ID (continued) Digital Toolkit: Children, what choice do I make? M. W. Hodes (mhodes@asvz.nl)* *ASVZ, Department of Clinical Child and Family Studies,VU Amsterdam, Netherlands Aim: Persons with intellectual disabilities are more and more considering having a baby. Still it is very difcult for these possible future parents to get professional support without being criticized and the fear that their child might be taken away right after birth. Individuals report: If I say I want a child, the only thing I hear is youre not able to become a good parent . As a result, future parents are excluded from important information to make a well-grounded decision and are not getting the support they need. Method: Care-organisation ASVZ designed a Toolkit: Children, what choice do I make? with tools for intellectually-disabled persons who are considering having child and as well as tools for professionals. The basic support attitude is one of partnership with the person with intellectual disabilities and respect for the wish having a child. Results and Conclusions: The Toolkit is used by almost every care-organization in the Netherlands. In 2010 the Toolkit got a big national award. The money from this award is now used to launch an international website with free downloads in different languages. From all over the world we hope to get responses and initiatives for exchanging experiences and starting research.
VIPP-LD: A promising Video Feedback intervention program for parents with ID M. Hodes (M.W.Hodes@vu.nl)*, M. W. Hodes, S. Kef, H. M. Meppelder & C. Schuengel *Department of Clinical Child and Family Studies,VU Amsterdam, Netherlands Aim: Parenting support has been shown to be of benet to parents with intellectual disabilities (ID) on several outcomes; however, effects on parent-child interaction in the form of sensitive responsiveness and positive inductive discipline are still under debate. This study tested the effects of an evidence-based parenting support program adapted for parents with ID. Method: Videofeedback Intervention for Positive Parenting-Learning Difculties (VIPP-LD) involves 15 home visits which center around videotaped parent-child interactions, and supporting the development of parenting skills and reinforcing their application. A randomized clinical trial is in its nal stages of completion, based on 80 families recruited from care organisations. Nineteen (19) professionals were trained to deliver the intervention under the supervision of 12 psychologists. Outcomes were assessed using pre-, post-test and follow-up observational and self-report instruments. Results and Conclusions: Parents and professionals assessed the social validity of the program as high. Short-term effects based on pre- and post-test measures for the experimental and control group will be presented.
Social validity of the Swedish version of PYC M. Starke (mikaela.starke@socwork.gu.se)*, R. Mildon & C. Wade *Department of Social Work, University of Gothenburg, Gothenburg, Sweden Aim: There is increasing acceptance of the importance of using evidencebased practices when supporting people with intellectual disability (ID) in their parenting role. In Sweden no such programs exist. Therefore Parenting Young Children (PYC) was translated and trialed in eight municipalities in Sweden over a year. This presentation will share results from the implementation process of PYC concerning the social validity of the program. Method: A mixed-method individual case study approach was used to collect qualitative and quantitative data from parents and professionals exposed to PYC. Results: Results from focus groups with professionals showed that PYC corresponded very well to the professional context of social work in the Swedish municipalities. PYC is described as being credible, useful and applicable, includes helpful pedagogic methods, and increases professionals skills. However there is a need for contextualization of the program, and further work is needed in order to make PYC more accessible. The parents indicated that they were very satised with PYC. They felt that the clarity, pace and tasks of PYC helped them to develop their parenting skills. Conclusions: The nding reveals a need for further development of PYC into a Swedish context.

Symposium: Perceived support needs of parents with ID Experiences of social network members of mothers with intellectual disabilities J. de Kimpe (Jos.de.Kimpe@gemiva-svg.nl)*, S. Kef, M. W. Hodes & C. Schuengel *Department of Clinical Child and Family Studies,VU Amsterdam, Netherlands Aim: In a qualitative and quantitative study, the hindering and promoting factors for family and friends to support mothers with intellectual disabilities (ID) with their parenting were explored. Insight into these factors is necessary for the well-being of mothers and their children, and improve cooperation between professional and informal support systems for these mothers. Method: Firstly, 14 social network members and 9 professionals participated in focus groups and interviews. These qualitative ndings were then used to construct a questionnaire for social network members that explored: forms and frequency of support, hindering and promoting factors in providing support, characteristics of the parenting situation, quality of family relationships, societal and personal attitudes towards parents with ID, and cooperation with formal support staff. There were 122 social network members (mainly family and friends) of 47 mothers who completed the questionnaire. Results and Conclusions: Results will be presented on hindering and promoting factors for family and friends to support the mothers with ID. Outcomes of this study point to the importance of personal, family, and cooperation aspects to promoting a satisfying support for the mother with ID. Implications will be presented for all groups involved: social network members, mothers with ID, and support staff. Parents with intellectual disabilities:Their thoughts about asking and accepting support H. M. Meppelder (h.m.meppelder-de.jong@vu.nl)*, S. Kef, M. W. Hodes & C. Schuengel *Department of Clinical Child and Family Studies,VU Amsterdam, Netherlands Aim: Parents with intellectual disabilities (ID) who are reluctant to ask for, and accept, parenting support have been labelled as at risk for maladaptive parenting. An alternative conceptualization is that gaps exist between parental support needs and the services offered to them. Asking and accepting help may be an outcome of a lack of shared problem denitions and shared strategies for addressing these problems, combined with a lack of trust in professional providers of support. Method: Over 100 parents with ID, recruited from care organizations, were interviewed using the Support Interview Guide (SIG). The SIG was extended with a set of questions about asking for and accepting support in challenging childrearing situations. In addition, parents reported their parenting stress and their relation with support staff. Interviews were conducted during home visits and afterwards subjected to structured coding and content analysis. Results and Conclusions: The results revealed a wide variation among parents of perceived support needs and perceived sources of support, including but not limited to professionals. Associations will be presented between ratings of the tendency to seek and accept professional support and working alliance, parenting stress, support from the informal network and earlier experiences with professional support. The working alliance between mothers with intellectual disabilities and their support staff H. M. Meppelder (h.m.meppelder-de.jong@vu.nl)* S. Kef, M. W. Hodes & C. Schuengel *Department of Clinical Child and Family Studies,VU Amsterdam, Netherlands Aim: Parenting is among the most complex of human activities, and parents with intellectual disabilities (ID) often need professional support in raising their children. Bridging the gap between parents needs, expectations, and the support provided by workers is often difcult. This study explores the factors that are associated with the working alliance. Method: Over 120 parents with borderline to mild ID and their support workers assigned to them by the rehabilitation centre reported on their working alliance with one another. In addition, parents reported their parenting stress on the PSI. Interviews were administered during home visits and adapted to the parents level of understanding. Results and Conclusions: Results will be presented on the quality of the working alliance both from the parents, as well as the professionals, perspectives. Parenting stress, support from the natural network, child behaviour problems, adaptive functioning, and living situation will be combined into a multivariate model for explaining working alliance.
Symposium: Attitudes and perceptions of parenthood The internets empowering and disempowering qualities: Online (re)presentation of disabled parents H. B. Sigurjnsdttir (hbs@hi.is)* & K. Bjrnsdttir *Research Center on Disability Studies, University of Iceland, Iceland Aim: The aim was to explore the disempowering and empowering qualities of the internet in relation to the discourse on disability and parenthood. Method: Analysis of online postings (e.g. blogs, chat rooms, and news media) on the subject of disability and parenthood in Iceland. Google search engine was used to search for keywords. Approximately 1800 online articles and postings were categorized, read, and analyzed by employing a critical historical analysis of discourse, which brings attention to the historical development of ideas and the tension between different ideas. Results: Four discursive themes were dominant: (1) disability metaphors, (2) negative attitudes, (3) doing being ordinary, and (4) advocacy. The virtual discourse was shaped by the decit understanding of disability and disabled parents, commonly viewed as unable and unt to care for children. Conclusions: Despite the potential of the internet to provide a platform for different groups to voice their thoughts and opinions, disabled people in Iceland have not carved out virtual space for advocating their right for family life and parenthood. However, the discursive themes were recurrent and give valuable information about public opinions on disability in Icelandic society, and the empowering and disempowering qualities and effects of the virtual sphere. Attitudes of parents, case workers and university students regarding the expression of sexuality and parenting rights of people with intellectual disabilities in Quebec M. Aunos (maunos.crom@ssss.gouv.qc.ca)* & L. Pacheco *West Montreal Readaptation Center, Brock University, Canada Aim: Attitudes towards sexuality and parenting by persons with intellectual disability (ID) are a contentious issue within society. While there are studies that have examined the perceptions of youth protection workers, little is known of the perceptions of other support networks in the lives of these families. The aim of this study was to examine and compare attitudes that parents, specialized service workers, and university students have in regards to the sexuality and parenting of persons with ID. Methods: A questionnaire on attitudes was administered to a group of 820 participants from Quebec, Canada, that included the following: parents, specialized workers (with and without experience, and with continuous education program in the eld of disabilities), university students from relevant programs, psychology students without a specialized training in ID, and students from different elds. Results: All groups expressed comfort in discussing sexuality in general but were less comfortable about discussing the sexuality of persons with ID, and even less comfortable in discussing parenting of persons with ID. Specialized workers demonstrated the most conservative attitudes and university students had the most liberal attitudes towards parenting of persons with ID. Conclusions: The results of this study have implications for clinical practice and research. Professionals social representation of parenthood and intellectual disability H. Sigurjnsdttir (hbs@hi.is)* & H. B. Starke* *Research Center on Disability Studies, University of Iceland, Iceland Aim: The aim of this study was to capture professionals social representation of parenthood and intellectual disability in a Nordic context. Method: The data were collected from two independent Nordic studies. In the Swedish study, focus groups were carried out with professionals working with parents with intellectual disabilities (ID). In Iceland, focus group and individual interviews were completed with the same group of professionals. The data were analyzed by using social representations and disability theory. Results: The social structural relationship between parents and professionals mirrors both the prevailing stereotypes of disabled people as inferior and the overwhelming structural inequalities. The ndings indicate that the professionals primarily viewed the parents in terms of limitations and diagnostic labels, and the expectations they had for them being parents seemed almost non-existent. Conclusions: The results from these studies gives insight into the still imperfect understanding of professionals attitudes, experiences, and views concerning their work with families where one or both parents have intellectual disabilities. Further knowledge and discussion is needed about the implication of the professionals attitudes in the meeting with the parents.

Symposium: Contextual factors of parents with ID Modeling contextual inuences on parents with intellectual disability and their children C. Wade (healthystart@parentingrc.org.au)*, G. Llewellyn & J. Matthews *Parenting Research Centre,Victoria, Australia Aim: Parents with intellectual disabilities often experience below-average living conditions. These compromised living conditions have been widely associated with risk for children and parents, perhaps explaining some of the negative attitudes towards these parents or high rates of child removal. However, there has been limited empirical research about how disadvantaged living conditions interact to inuence parents and children in these families. Method: A theoretical model of the relationships between parent, child and contextual variables in 120 Australian families where a parent had intellectual disability was tested. Results: While the context in which the child is embedded is important to child well-being, the pathway through which a childs wider environment impacts on his or her well-being is via parenting practices. In addition, access to social support was found to be a particularly important inuence on parenting practices, which points to ways in which parenting interventions may be targeted to promote optimal child well-being for these families. Findings will be discussed in light of the limitations of the study. Conclusions: Implications of the ndings for research, intervention, and policy will be explored, with the goal of promoting optimal well being for children who are raised by parents with intellectual disability.
Symposium: Contextual factors of parents with ID (continued) The experiences of mothers with an intellectual disability from cultural communities L. Pacheco (lpacheco@ssss.gouv.qc.ca)* *Rehabilitative Medicine, University of Alberta, Canada Aim: The experiences of mothers with an intellectual disability (ID) have been examined in the literature, yet there has been limited exploration of the intersections of mothering, intellectual disability, and culture. The aim of this doctoral study is to give attention to the life stories of mothers with intellectual disabilities from cultural communities by exploring the intersections of these social locations. Method: This is a narrative study underpinned by intersectionality theory. Thirty-three in depth-interviews and participant observations were conducted with eight mothers. Results: Three over-reaching and intersecting themes emerged: the social consequences of being a mother with an intellectual disability, keeping face within a cultural community and negotiating power relations. The narratives of these women illustrate the social and culture expectations of being a good mother and the social consequences of not achieving this status. In face of oppression, these women illustrate ways in which they challenge and resist these socio-cultural ideals. Conclusions: The ndings of this study have implications for both research and practice as it illustrates the inuence of culture on the experiences of mothers with intellectual disabilities.
Families with parents with intellectual disabilities L. Mensas (lisbeth.mensas@hb.se)* & M. Starke *Nordic School of Public Health, Sweden Aim: In the last decades, living conditions for people with intellectual disabilities has changed. These changes have, among other things, meant that people with intellectual disabilities choose to become parents. However, very little is known about the living conditions in these families. In order to nd out about the living conditions in families in which the parent(s) have intellectual disabilities, a survey was conducted among professionals. Method: A web-based questionnaire was sent to professionals working in different agencies with parents who have intellectual disabilities in the region of VstraGtaland, Sweden. This region was chosen as it has 20 percent of the Swedish population and it covers different types of demographics. The survey covered questions about frequencies of families, family type and numbers of children living in the family or in foster care. Results: The results provide knowledge concerning some living circumstances in families in which the parents have intellectual disabilities. The results will be discussed in terms of generalisability to earlier research and usefulness in order to deepen the knowledge about these families. Conclusions: As the knowledge is sparse the data will highlight some of the living conditions for these families and be useful for further research.

Symposium: Public health approaches to intellectual disability I Public health approaches to intellectual disability E. Emerson (eric.emerson@lancaster.ac.uk)*, G. Glover & C. Hatton *Lancaster University, UK This day-long (5 hour) symposium will provide an overview of current research relating to public health approaches to intellectual disability. The symposium will contain ve one-hour sessions: (1) an introduction to public health approaches; (2) epidemiological studies of the health needs of people with intellectual disabilities; (3) health surveillance systems to monitor the health needs of people with intellectual disabilities; (4) systemic interventions to improve the health of people with intellectual disabilities; and (5) individual behaviour change interventions to improve the health of people with intellectual disabilities. The symposia will close with a round table discussion on future directions in research on public health approaches to intellectual disability. Public health and intellectual disability G. Glover (Gyles.Glover@gmail.com)* *NHS NorthEast Public Health Observatory, England Aim: To summarise the scope of public health, and the extent to which public health activities in England cover this ground for people with intellectual disability. Method: Narrative non-systematic review based on a conceptual framework for public health activities. Results: Using England as a case study, it appears that there exist major gaps in the extent to which typical public health activities are applied to people with intellectual disabilities. Conclusions: Key policy and practice issues will be identied. Research on public health approaches to intellectual disability: Current practice E. Emerson (eric.emerson@lancaster.ac.uk)* & C. Hatton *Lancaster University, UK Aim: To summarise current research practice relevant to public health approaches for improving the health and well-being of people with intellectual disabilities. Method: Narrative non-systematic review. Results: Current research practice (methodology and content) will be summarised in the following areas: (1) describing and quantifying the health needs of people with intellectual disabilities relative to the general population; (2) identifying the determinants of health disparities and inequalities; and (3) evaluating the impact of public health interventions. Strengths and weaknesses of current research practice will be identied and contrasted with current practice in contemporary public health research in general. Conclusions: Key conceptual and methodological issues will be identied. The individual and the group: Negotiating the tensions in public health approaches in the context of intellectual disabilities R. Northway (rnorthwa@glam.ac.uk)* *University of Glamorgan,Wales Aim: The literature highlights many concerns about the health needs of people with intellectual disabilities (ID) but these are mainly focused on issues of access to, and quality of, health service provision. However, gaps are apparent both in relation to determinants of health and the health of people in low and middle income countries. This paper thus aims to explore the potential contribution of a public health approach to meeting the health needs of people with intellectual disabilities. Method: Critical review of the literature. Results: There is currently limited overlap between the elds of intellectual disabilities and public health despite the potential of public health approaches to make a positive contribution to improving the health status of people with intellectual disabilities. One reason for this may be the tension between individual need, which has been promoted in intellectual disability services, and the focus on group need in the context of public health. In addition public health approaches have been viewed negatively by some for seeking to eliminate disability. Conclusions: Despite the tensions and reservations, public health approaches appear to offer a more inclusive approach to meeting the health needs of people with intellectual disabilities and further research should be undertaken.
Physical Health
Symposium: Public health approaches to intellectual disability II Health promotion program:Tools for community action B. Marks (bmarks1@uic.edu)* & J. Sisirak *Rehabilitation Research and Training Center (RRTC) on Aging with Developmental Disabilities, University of Illinois at Chicago, US Aim: The UN Convention on the Rights of Persons with Disabilities supports the global impetus for health promotion for people with intellectual disabilities (ID). Its 50 articles address the human rights and fundamental freedoms that must be guaranteed for all persons with disabilities to enjoy the highest attainable standard of health without discrimination. Unfortunately, people with ID continue to be excluded from many community-based health promotion programs, despite the documented benets of health promotion and education to maintain health and control risk factors. Because personal health practices are just one determinant of health, programs must address the environmental, cultural, and psychosocial constraints that impact individuals with ID and their support persons as they experience widening inequities in health care services and poorer health outcomes compared with their non-disabled peers. Method: The challenges in developing and implementing health promotion programs are discussed, along with strategies that can be used by community-based service providers to implement programs. Results and Conclusions: Integrating health promotion strategies within existing community-based structures, such as schools, churches, worksite settings, day programs, and residential programs for people with ID can provide the structure for continuous access to information, ongoing nancial support, and participation in health promoting behaviors. Barriers and enablers to performing population studies in people with intellectual disability N. Lennox (n.lennox@uq.edu.au)*, L. McPherson, R. Ware & M.Taylor *University of Queensland, Australia Aim: To present the observations and experiences drawn from populationbased intervention studies in the area of disability and health, to identify barriers and enablers to undertaking this research. Method: We have performed three large randomised controlled trials involving adolescents and adults with intellectual disability (ID). Drawing upon these experiences and those of the preceding pilot studies, we have developed an understanding of the elements which were barriers and enablers to the recruitment and retention of participants. Results: We found barriers to recruitment that are common to many hard-to-reach populations. These included: multiple services providers and tiers of governance, the ux of participants, obstacles to communication with people with ID and their families, and the perceived value of the research to participants. Strategies which maximised recruitment and retention included a strong and widespread commitment to the project and a close and constant communication with participants and their supporters. Conclusions: To include people with ID in large scale studies requires considerable investment of time and effort beyond that encountered in the general population. However, to exclude people with ID increases the uncertainty about the efcacy of the interventions; and reinforces the systemic discrimination experienced by this population. Out of sight, out of mind: People with intellectual disability in public health research K. van Dooren (k.vandooren@sph.uq.edu.au)*, R. Ware, K. Brooker & N. Lennox *University of Queensland, Australia Aim: Randomised controlled trials (RCTs) and, to a lesser extent, cohort studies, generate rigorous (gold standard) evidence for improving public health policy and practice. The aim of this study was to evaluate (i) the extent to which RCT and cohort study recruitment strategies actively include people with intellectual disability (ID), and (ii) the identication of ID in these studies. Method: We conducted a systematic review of RCTs and cohort studies in a selective sample of international public health journals, and extracted data relating to recruitment strategies, measures of ID, study design, and health outcome measures. Results: People with ID are often actively or passively excluded from mainstream public health research. Only one in ten of the 189 studies reviewed included recruitment strategies that were inclusive of people with ID (e.g. waived informed consent and home visits). Most of these studies used proxy measures of ID. Conclusions: There exist few opportunities for people with ID to participate in research that could affect public health programs and policies. To determine how this group can best be supported to reach equivalent health status and service access as many in the general population, inclusive recruitment strategies are needed.

Symposium: Public health approaches to intellectual disability III Challenges and progress in health surveillance of people with intellectual disabilities: A tale of two countries G. L. Krahn (GFK2@cdc.gov)* & H. Oullette-Kuntz *Centers for Disease Control and Prevention, Atlanta, Georgia, US Aim: This presentation will introduce the symposium topic of health surveillance among adults with intellectual disabilities, and highlight the issues that have challenged Canada, the USA and other countries. Method: Collaborative efforts of modelling a multi-stage approach will be described. Developing and implementing a multi-stage model for establishing a health surveillance system include: (1) case denition based on a contemporary understanding of intellectual disabilities; (2) preliminary pilot projects to establish approaches for identifying adults with intellectual disabilities; (3) analysing existing administrative data to determine what information is already available for surveillance and how it can be used and useful; and (4) forming alliances to maintain attention to the needs and use information to improve services, supports and training. Results and Conclusions: Future strategies include how to learn more from available data, and leveraging partnerships. Advances in health surveillance among persons with intellectual disabilities G. L. Krahn (GFK2@cdc.gov)*, H. Ouellette-Kuntz, E. Emerson, G. Glover, E. Cocks & L. Rosenwax *Centers for Disease Control and Prevention, Atlanta, Georgia, US Determining the health status of adults with intellectual disabilities at the population-level is challenging. For most countries there are no populationbased systems to identify all adults living in communities; there is no consensus on what information is most important to collect; and methods for how to gather the information are not fully developed. This symposium topic will share experiences from four different countries. Collaborative efforts of modeling a multi-stage approach will be described for Canada and the USA. In England, authors have developed a national and local capacity for monitoring through establishing and operating for two years a new Public Health Observatory. In Australia, two signicant drivers have created new opportunities the National Disability Insurance Scheme and the Australian National Disability Agreement to improve the health and life outcomes for people with disabilities. Presenters will share lessons learned and explore opportunities for international collaborations.
Physical Health
Symposium: Public health approaches to intellectual disability III (continued) Setting up an English national health observatory for people with intellectual disabilities: What did we nd? What do we need? And who is interested? E. Emerson (eric.emerson@lancaster.ac.uk)* & Gyles Glover *Lancaster University, England, UK Aim: In response to criticism from investigations highlighting health inequalities faced by people with intellectual disabilities (ID) in England, in 2010 the English Department of Health established a specialist national Observatory to monitor the health of people with intellectual (learning) disability (LDPHO). This session will present the rst two years of actions and outcomes. Method: In the rst year, at a national level, the LDPHO: (1) indentied, collated and disseminated information collected on the health of and health (and other) services used by people with ID; and (2) undertook a scoping study to identify practical steps for improving the coverage and quality of such information in the future. In its second year, the LDPHO has developed routine national benchmark indicators in a range of primary and secondary care settings. Working with our NHS Information Centre and other national agencies, a specication for annual production of national extracts from both primary and secondary healthcare systems was produced. It has also involved work with local agencies to use these indicators in strategic planning and on-going contract monitoring locally. Results and Conclusions: Results are discussed in relation to key issues of identication, selection of health indicators, and using this information in service commissioning. What is known about the health status and service use of adults with intellectual disabilities in Australia? E. Cocks (E.Cocks@curtin.edu.au)* & L. Rosenwax *Curtin University, Australia Aim: To describe national datasets in Australia that provide information on health status and service utilisation by adults with ID; examine published research; comment on opportunities that may be provided by the proposed development of a national disability insurance scheme by the Australian Government; and consider developments in Western Australia. Method: National disability datasets provided by the Australian Bureau of Statistics and the Australian Institute of Health and Welfare are derived from census, surveys, and annual data collection on utilisation of government funded disability services. In Western Australia, Data Linkage Australia connects over 30 Western Australian population datasets that include disability data. One dataset generated by the Western Australia Disability Services Commission (IDEA) specically focuses on ID. Results: National specic data on the health status of adults with ID in Australia are primarily accessible within larger disability datasets. Published work is focused on cohort studies in specic jurisdictions or locations. Conclusions: There is need for population-based studies of the health status of adults with ID in Australia to provide the foundation for targeted public health interventions and address surveillance issues. A starting point could be a State-based project.

Symposium: Public health approaches to intellectual disability IV Building longitudinal prevalence gures: Findings from the Intellectual Disability Supplement of the Irish Longitudinal Study on Ageing M. McCarron (mccarrm@tcd.ie)*, J. Swinburne & P. McCallion *Intellectual Disability Supplement Irish Longitudinal Study on Aging Aim: A prole of the ageing of people with intellectual disability (ID) in Ireland. In Ireland and elsewhere there is a sizeable and growing population of older persons with ID but we know little about their ageing and there are concerns that mortality is higher, health problems are greater, access to services and health promotion is poorer, and quality of life is often compromised. The Irish Longitudinal Study of Ageing (TILDA) has been extended with an intellectual disability supplement (IDS-TILDA). Method: 753 persons aged 40+ with ID drawn randomly from the National Intellectual Disability database (NIDD) have responded (or carers have responded on their behalf) to questionnaires addressing demographics, health, health utilization, medication usage, ADL/IADLs, employment/day programming, social participation, social connectedness, life satisfaction, happiness, ageing perceptions, personal choices, sources of income, and lifelong learning. Results and Conclusions: The ageing of people with ID has been similar in many respects to that of the general population but there are important differences in physical and mental health, health care access and utilization, incidence of dementia, and access to life-long learning, social engagement and friendship/family networks. Health disparities, co-morbidities, and access to healthcare among Special Olympics athletes A. Shellard (ashellard@specialolympics.org)*, J. Nanavati, R. Moscato & D. Mersereau *Special Olympics International Aim: This study uses Special Olympics (SO) Healthy Athletes (HA) screenings results to assess co-morbidities among SO athletes and compare HA results to World Health Organization (WHO) data. Method: Since 1997, SOs HA program has conducted 1.2 million health screenings for people with intellectual disabilities (ID) from 170 countries. Screening results were analyzed and compared to WHO physician density data. Results: Globally, 30% of SO athletes are obese, 14% report mouth pain, 10% have never had an eye exam, and 27% fail hearing tests with a high prevalence of co-morbidities. Positive correlations exist between never having an eye exam and urgent dental referrals (.371, p = 0.009) and between obesity and eye disease (.432, p = 0.002). Negative correlations exist between physician density and never having an eye exam (.614, p = 0.000) and mouth pain (.356, p = 0.001), whereas a positive correlation exists between physician density and obesity (.348, p = .030). Conclusions: This analysis highlights health disparities among people with ID, and the results will help SO improve health programming and provide insights for developing follow-up care partnerships. Relationships between physician density and screening results will be explored further, especially the relationship with obesity. Possible relationships with development and regional differences also will be analyzed.
Physical Health
Symposium: Public health approaches to intellectual disability IV (continued) Multilevel methods in cancer control research in persons with IDD C.Tyler (catyle@ccf.org)* *Cleveland Clinic, Case Western Reserve University, Ohio, US Aim: Increasing life expectancy in this population demands greater attention to cancer control issues, especially cancer screening practices. The aim of this presentation is to describe a study in progress employing a multilevel methodology to explore potential indicators of disparity in colorectal cancer (CRC) screening in adults with intellectual disabilities or developmental disorders (IDD). Method: CRC screening will be examined at the population level through analysis of a Medicaid data base linked to a state cancer registry; at a regional level through analysis of a medical data management system that unites electronic health records from multiple participating health systems; and at an institutional level through its electronic health records. Results: On-going experience with the complexities, difculties, and rewards of utilizing multilevel methodology for health services research in persons with IDD will be discussed. Conclusions: Research methods related to health services in persons with IDD need to keep pace with the evolution in health information technologies, systems, and potential for data linkages. The metabolic syndrome is present already in young adults with intellectual disabilities: A follow-up study E. Flygare Walln (eva.ygare.wallen@mdh.se)*, M. Mllersdorf, K. Christensson & C. Marcus *Department of Clinical Science, Intervention and Technology, Division of Pediatrics, Karolinska Institutet, Stockholm, Sweden Aim: To investigate the longitudinal development in cardiometabolic risk factors among young adults with and without intellectual disabilities (ID). Method: Fifty-three participants with (n = 23, female = 12) and without (n = 30, female = 20) a mild/moderate intellectual disability (ID), mean age 24 (SD 0.9), were measured in 2004 and again in 2009 with anthropometric measures, blood pressure, fasting blood samples, body-composition with DXA, and for estimated aerobic capacity a submaximal ergometer bicycle test. Participants without ID had attended vocational (n = 10) or theoretical education (n = 20). Results: Young adults with ID had the unhealthiest levels in both 2004 and 2009 on most measured variables. Abdominal fat had increased more in the group with ID compared to theoreticallyeducated participants (diff in percent 4.61 (3.66) vs 0.45 (6.17) p = 0.038). Lean body mass had decreased among participants with ID compared to an increase in the vocationally-educated (diff in grams 3.29 (1541) vs 2783 (2177) p = 0.017). Twenty-two percent of those with ID had developed the metabolic syndrome in comparison to 0% in the group without ID. Conclusions: Cardiometabolic risk factors increases among young adults with ID as well as in vocationally-educated controls.

Symposium: Public health approaches to intellectual disability V Community nutrition: Framing the concept, reviewing the evidence J. Sisirak (jsisirak@uic.edu)*, B. Marks, N. Chavez,T. Heller, B. Riley & B. McElmurry *Rehabilitation Research and Training Center (RRTC) on Aging with Developmental Disabilities, University of Illinois at Chicago, US Aim: People with ID have higher prevalence of overweight/obesity compared to general population, with the highest rates among people living in community settings. While eating habits are one of the major determinants of overweight and obesity, established predictors of dietary intake, including preferences, accessibility, and availability, may present differently among people with ID. Method: This presentation will review existing evidence of nutrition issues and outline a conceptual framework to address how people with ID who live in community make food choices. Results: A conceptual framework that addresses issues related to factors and determinants of food choice will be presented, incorporating a multilevel approach derived from ecological models of health behaviour, principles of a Primary Health Care Model, Person-Centered Planning, and Social Cognitive Theory. The following modifying and moderating factors will be discussed: (a) individual factors; (b) knowledge and sources of information; (c) efcacy, beliefs, and attitudes toward food and nutrition; and (d) social and environmental supports. Conclusions: Understanding the complexity and multilevel processes that impact food choices among people with ID we may gain insight in developing appropriate, accessible, effective, and successful health promotion and education programs that will aid us in promoting community integration in this population.
Physical Health
Symposium: Update from south of the border: Innovations in medical education and clinical practice I (Offered in partnership with the American Association on Intellectual and Developmental Disabilities) The U.S. National Curriculum Initiative in developmental medicine M. Holder (mattholder@aadmd.org)* *American Academy of Developmental Medicine and Dentistry Aim: In the United States, most medical students and primary care residents receive little to no training with regard to the care of adults with neurodevelopmental disorders and intellectual disabilities. The National Curriculum Initiative in Developmental Medicine (NCIDM) was created to address this issue. The NCIDM was formed through a partnership between the American Academy of Developmental Medicine and Dentistry (AADMD), the Family Medicine Education Consortium (FMEC), and the North Carolina Mountain Area Health Education Center (MAHEC). The purpose of the NCIDM is to develop a socio-biologically balanced, wellorganized curriculum that can be implemented in primary care residency training programs around the United States. The purpose of this session is to highlight the content of the curriculum that has been developed. Method: The teaching tools available will be showcased and the process by which the curriculum was formed will be reviewed. Results and Conclusions: The current and future efforts of curriculum integration will be discussed.
Piloting a US Curriculum in residency training Health problems of psychiatric inpatients with intellectual disabilities L. Charlot (charlotl@ummhc.org)*, S. Abend, P. Ravin, K. Mastis, A. Hunt & C. Deutsch *Department of Psychiatry, University of Massachusetts, US Aim: Physical distress may worsen behaviour in patients with intellectual disabilities (ID). Yet, little has been written about this topic. We conducted an exploratory investigation of the medical problems of 198 psychiatric inpatients with ID. Method: Frequency of medical problems, medications, length of stay and other data were tallied from patients discharge summaries. The effects of medications, gender, age group, level of ID, and diagnosis of an autism spectrum disorder (ASD) or Down syndrome (DS), on length of stay and rate of medical problems were assessed. Results: Inpatients with more medical diagnoses had longer lengths of stay (r = +0.32, P < 0.0001). Psychoactive medications and number of medical problems were correlated (r = +0.32, P < 0.0001). Frequentlydiagnosed medical problems included constipation (60%, n = 118) and gastro-esophageal reux disease (38%, n = 75). Older inpatients had more medical problems. In 41% of cases, a medical problem played a key role in provoking the behavioural changes that led to the inpatient admission. Implications: Based on the above ndings, a Medical Home pilot was designed to compare usual care to care by a multidisciplinary specialist team, with a focus on increasing detection of health problems and ADEs. I. Jurczyk (irene.jurczyk@mahec.net)* & M. Hicks *Mountain Area Health Education Center (MAHEC), North Carolina Aim: The North Carolina (NC) pilot of the US curriculum, developed by the National Curriculum Initiative in Developmental Medicine (NCIDM), is a grant-funded study now in process. Funded by the NC Council on Developmental Disabilities, and led by the Mountain Area Health Education Center in Asheville, NC, the purpose of the pilot phase is to implement core components of the three-year curriculum at the residency training level. Method: The discussion will be a review of the progress to date, the potential impact of the curriculum on other residency programs, and a discussion of the quantitative and qualitative measures being used to evaluate the curriculum in North Carolina. Results and Conclusions: A brief overview of progress underway at other pilot sites will be included in the discussion.

Symposium: Update from south of the border: Innovations in medical education and clinical practice II (Offered in partnership with the American Association on Intellectual and Developmental Disabilities) Evaluation methods in medical education related to developmental medicine curricula C.Tyler (catyle@ccf.org)*, C. Heaton & J. Wilkinson *Cleveland Clinic, Case Western Reserve University, Ohio Aim: As undergraduate and postgraduate medical curricula related to IDD are written and disseminated, careful consideration about appropriate educational evaluation methods is necessary. This session explores methods for learner evaluation related to medical education in developmental disabilities. Method: Presenters will describe their experience with developing and pilot-testing methods of educational evaluation applicable to medical education in developmental medicine. These include: (1) objective structured clinical examinations (OSCEs); (2) behaviorally-anchored review of videotaped clinical encounters; and (3) novel evaluation strategies informed by qualitative research investigating the experiences, expectations and preferences of self-advocates regarding their own health care. Results: Attendees will learn about the above educational evaluation methods, and will be invited to share their own experiences and ideas regarding evaluation. Conclusions: Standard as well as novel strategies of evaluation will be necessary to insure that education in developmental medicine is effective, and results in competent, compassionate health care by physicians. Symposium: Down syndrome: Issues and services
Physical Health
Using linked, statewide vital statistics data to examine health issues in Down syndrome R. C. Urbano (richard.urbano@vanderbilt.edu)* & R. M. Hodapp *Dept of Special Education and Pediatrics,Vanderbilt Kennedy Center,Vanderbilt University, Tennessee, US Aim: To determine the nature and correlates of hospitalization and death among children and adults with Down syndrome (DS). Method: Multi-year records (some from 1990) were linked of all Tennessee births, hospitalizations, and deaths. Most children with DS were identied through birth records, with extra children and all adults identied through ICD-9 codes from hospitalization records. Birth records include 140 variables concerning the newborn, birth process, parent-family demographics, and history of medical care during pregnancy. For each in-patient visit, hospitalization provides primary and (up to 8) secondary diagnoses, along with demographic, service, and payer information. Death records provide demographic information and underlying-multiple causes of death. Results: Findings illustrate the prevalence, timing, and causes of in-patient hospitalization and mortality during infancy, as well as of early (129 year) deaths among persons with Down syndrome. Conclusions: As a linkable, population-based source of extensive information over many years, public health databases provide an excellent window into the prevalence, timing, causes, and outcomes of health conditions in DS. Future work will examine racial, SES, and geographic-based health disparities, as well as health problems specic to DS (e.g., heart-respiratory conditions, cancer, hearing problems).
The AAIDD 2012 Healthcare Guidelines for persons with I/DD J. OGrady Jr. (jogrady@mcw.edu)*, C.Tyler, A Bonardi,T. Cheetham & J. Reich *Medical College of Wisconsin, Phoenix Care Systems Inc.,Wisconsin, US Aim: The aim of this presentation is to educate symposium participants in the AAIDD 2012 Healthcare Guidelines for use by physicians, caregiving organizations, clients, and client advocates with the goal to assure that comprehensive healthcare screening and management is provided to the individual patient with intellectual or developmental disabilities (IDD). Method: Following a literature search of existing healthcare screening guidelines for adults with IDD, an expert consensus process was used with monthly teleconferences from 2010 to 2012, to develop AAIDD Healthcare Guidelines using the most current literature as a basis for recommendations. Results: We will review the AAIDD 2012 Healthcare Guidelines and discuss the project process and screening guideline recommendations related to cancer, medical illnesses, wellness and prevention methods, infectious diseases, sensory impairments, and behavioral/mental health/ psychiatric disorders. Conclusions: AAIDD 2012 Healthcare Guidelines have been developed with anticipated implementation using AAIDD training programs and quality monitors available to measure guideline adherence. These guidelines will also form the basis for future ofce-based research and public health policy advocacy. Morbidity and hospitalization of adults with Down syndrome A.Tenenbaum (tene@hadassah.org.il)*, M. Chavkin, I. D. Wexler, M. Korem, C. Shulman & J. Merrick *Down Syndrome Medical Center and the Pediatric Department, HadassahHebrew University Medical Center, Jerusalem, Israel Aim: To investigate the morbidity and hospitalization of adults with Down syndrome (DS) in view of the signicant increase in their life expectancy and subsequent higher incidence of morbidity. Method: Analysis of 297 hospitalizations of 120 adults with DS aged 1873 years hospitalized at the Hadassah-Hebrew University Medical Center, Jerusalem, Israel during the years 19882007 compared with data of the general population hospitalized during the same period. Results: Mean number of hospitalizations among adults with DS was signicantly higher (P = 0.000001) and longer (P = 0.0009) than in the general population. Exceptionally long hospitalizations were in the departments of internal medicine, dermatology and intensive care units. There was no signicant difference in mortality during hospitalizations between adults with or without DS (P = 0.221). More than a fourth of the hospitalizations were caused by infectious diseases, mostly respiratory infections. Hypothyroidism (30.8%) and convulsive disorders (15.8%) were more prevalent compared with published data. In contrast, congenital heart disease, dementia, osteoporosis and obesity were less prevalent than expected. Conclusions: Adults with DS are hospitalized more frequently and for longer periods. There is a need for preventive community-based medicine, awareness of co-morbidities, and preparation of personnel for complex courses of illnesses and prolonged hospitalizations.

Symposium: Down syndrome: Issues and services (continued) A multidisiplinary outpatient clinic for adults with Down syndrome A. Coppus (tonniecoppus@planet.nl)* *Dichterbij, Center for the Intellectually Disabled, Gennep, The Netherlands Aim: Numerous studies have documented that persons with Down syndrome (DS) show an accelerated aging and are at increased risk of Alzheimers disease. Many of these people live in the community, with parents, brothers and sisters or in small group homes. They do not have access to specialized healthcare checks. In 2007 we organized a multidisciplinary outpatient clinic for adults with DS, where we provided a regular Health Watch Program. Method: Health status data were drawn from adults with Downs syndrome regularly visiting the multidisciplinary outpatient clinic. Each participant underwent an interview of general health and function followed by a physical examination as well as a laboratory examination. Data were collected at sequential intervals of approximately 14 months. Results: Findings include the most common health problems identied and those considered as risk factors associated with accelerated aging. Conclusions: Regular health checks are effective in identifying frequently-unrecognized health conditions in adults with DS such as vision and hearing impairments, obesity, hypothyroidism, epilepsy, gastrointestinal conditions, and behavioral and mental health problems.
Physical Health
Symposium: Nutrition and cardiovascular risk factors in an ageing population with intellectual disabilities Prevalence of cardiovascular risk factors older adults with an ID in The Netherlands C. F. de Winter (channadewinter@hotmail.com)*, L. P. Bastiaanse, T. I. M. Hilgenkamp, H. M. Evenhuis & M. A. Echteld *Reinaerde, den Dolder and Erasmus Medical Center, Rotterdam Aim: With increasing longevity, widespread immobility and a sedentary lifestyle among people with intellectual disability, cardiovascular risk factors (obesity, hypertension, diabetes, hypercholesterolemia and metabolic syndrome) are expected to be highly prevalent. What are the prevalence and correlates of overweight and obesity, hypertension, diabetes, hypercholesterolemia and metabolic syndrome? Method: A cross-sectional study among 1050 older people with ID (the HA-ID study). Results: Obesity is highly prevalent among older people with ID, with 26% according to body-mass-index, which is higher than in the same-aged general population, and 4648% abdominal obesity, according to waist circumference and waist-to-hip-ratio. Correlates are female gender, Down syndrome, a less severe ID, independent living, being able to eat, prepare a meal, or to do groceries independently, low level of physical activity and use of atypical antipsychotics. Prevalence of hypertension (53%), diabetes (14%), hypercholesterolemia (14%) and metabolic syndrome (45%) is high. Correlates of these cardiovascular risk factors are higher age, female gender, absence of Down syndrome, less severe ID, independent living, being able to prepare a meal or to do groceries independently and obesity. Conclusions: Cardiovascular risk factors are highly prevalent and present important health risks in older people with ID. Vitamin D levels in an ageing ID population S. Mergler (s.mergler@erasmusmc.nl)*, L. P. Bastiaanse, J. P. M. Wielders, J. L. Kingma-Thijssen, M. A. Echteld & H. M. Evenhuis *Department of Intellectual Disability Medicine, Erasmus Medical Center, Rotterdam, The Netherlands Aim: Vitamin D deciency may lead to low calcium levels, osteoporosis, increased fracture risk, fatigue, muscle weakness, cognitive deterioration and depression. In a large cross-sectional study on healthy ageing in older people with intellectual disability (HA-ID study), prevalence and associations of vitamin D deciency were assessed. Method: In blood samples of 618 adults with ID aged 50 years and over, vitamin D (25OH vitamin D) concentration and calcium levels were determined. As part of the HA-ID study, determinants of physical activity and tness (grip strength, mean number of steps per day), osteoporosis (quantitative ultrasound) and cognitive functioning were available. Results: Low vitamin D serum levels (below 50 nmol/l) were found in 49.2% of the study population and 7.7% even had a serum level below 25 nmol/l. Low calcium levels (<2.10 mmol/l) were found in l36 participants (6.1%). Vitamin D serum level was positively correlated with serum calcium level (p < 0.001). Results of regression analysis with associated determinants are not available at this moment but will be presented as well. Conclusions: Vitamin D deciency is frequently present in older adults with ID, and comparable to the prevalence in independently living Dutch elderly (50%). Food intake in older adults with intellectual disabilities in the Netherlands L. P. Bastiaanse (l.bastiaanse@erasmusmc.nl)*, M. A. Echteld & H. M. Evenhuis *Department of General Practice, Erasmus Medical Center, Rotterdam, The Netherlands Aim: To investigate reported food intake in older people with intellectual disabilities (ID) and to compare the results with national recommendations for people in the same age groups. Method: In 290 older people with ID, professional caregivers reported food and uid intake during three days: two week-days and one day in the weekend. Trained dietitians assessed intake of macronutrients and micronutrients in this group and calculated the daily energy requirements for each participant using the HarrisBenedict equation. Results: Preliminary results showed that in 51% of the study population the energy intake was too low, in 28% the energy intake was sufcient and in 21% the energy intake was too high. Looking at specic nutrients, this study showed that 18% suffered from protein energy malnutrition; in 87% of the study population the intake of saturated fat was too high; and uid intake was insufcient in 20% of the study population. Conclusions: Hardly any of the older people with ID meet the recommendations for a healthy food intake.
Accounting for racial disparities in mortality among children with Down syndrome A. J. Esbensen (anna.esbensen@cchmc.org)*, L. Hendershot, F. Hickey & B. Patterson *Cincinnati Childrens Hospital Medical Center, Ohio, US Aim: Life expectancies observed among individuals with Down syndrome (DS) are substantially shorter for African-Americans than Caucasians. There is a need to understand how racial disparities in co-morbid health conditions contribute to these disparate life expectancies. Method: Data were obtained from a DS specialty clinic at a Midwestern childrens hospital. Medical history, pre- and post-natal history, current medical conditions, and referral patterns were obtained from 831 children with DS in a clinic sample (10.2% African-American). Results: Minimal racial group differences in co-morbid medical conditions were observed. Group differences were observed in the frequency of nystagmus and PE tubes. Group differences were observed in the need for ongoing support from ophthalmology and cardiology. No differences were observed in the frequency of congenital heart disease (CHD), possibly suggesting that severity and not frequency of CHD warranted the ongoing cardiology support. Conclusions: The hypothesized racial disparity in co-morbid conditions contributing to mortality was only minimally supported. Racial disparities in life expectancy are likely related to other factors warranting investigation, such as differential use of, or access to, health care services, or severity of co-morbid health conditions. How use of health care services is related to severity of health conditions warrants future investigation.

Symposium: Changing health policy through research I Positioning ourselves to change health policy through research The Canadian approach H. Ouellette-Kuntz (oullette@queensu.ca)*, R. Balogh,V. Cobigo, B. Hennen,Y. Lunsky, M. A. McColl, D. Norris, R. Proulx, S. Shooshtari, B. Sullivan & B.Temple *Queens University, Kingston, Ontario, Canada Aim: To develop an evidence base on innovations to enable healthcare providers and decision-makers to provide community-based primary health care which responds to the unique needs of individuals with intellectual and developmental disabilities (IDD). Method: Review primary care and social care reform policy documents in four Canadian provinces. Develop partnerships with healthcare providers and policy makers within and across provinces. Evaluate initiatives against attributes of communitybased primary health care (CBPHC). Develop a research team including academics, policy makers,service providers, clinicians, families and individuals with IDD. Results: The four provinces are at various stages of reform in both primary care and social care. There is considerable interest among healthcare providers and policy makers to work together and with researchers within and across provinces to develop evidence to inform policy and practice. To date, eight initiatives have been identied for evaluation against the CBPHC attributes. Conclusions: The potential for inuencing health policy will be strenghtened by the multi-sector, transdisciplinary team approach. People with intellectual disabilities in general practice: Support and diminishing health inequalities. A perspective from Nijmegen, the Netherlands H. van Schrojenstein Lantman- de Valk (h.lantman@elg.umcn.nl)*, J. Naaldenberg & M. Mastebroek *Department of Primary and Community Care, Radboud University Nijmegen Medical Centre, Nijmegen, The Netherlands Aim: This presentation will report research from the Chair for Health Care for people with Intellectual Disabilities (ID). The Chair aims at achieving better health and better health care for people with ID through a dialogue with clients, families and professionals. It is embedded within the Department of Primary Health and Community Care, where research focuses on vulnerable people, and within the Consortium Stronger on Your Own Feet, to create a solid link between research and practice. Method: Analyses of literature and policy documents as well as the rst results of research within the consortium will be reported, along with information gathered through consultation and networking with stakeholders. Results: Increasingly, research in our centre focuses on: (1) opportunities for people with ID and their close relatives and supporters to live a healthy life; (2) tailoring primary health care to the needs of people with ID; and (3) characteristic health problems. Conclusions: The rationale behind these choices and practical implications will be presented and discussed. How we changed health policy for people with intellectual disability in Australia N. Lennox (n.lennox@uq.edu.au)*, H. Beange & J. Simpson *University of Queensland, Australia Aim: The presentation will describe the process which changed health policy and health service delivery for people with intellectual disability across Australia. Method: We will report on the various elements which contributed to the adoption of health assessment as an accepted part of health policy at a state and national level. We will describe the emergence of evidence along with the development of support within the disability and research community. Furthermore we will discuss the process that enabled clinicians, researchers, paid advocates, and families to join together to successfully lobby civil servants and politicians. Results: The change in health policy rst occurred at a state level in 2003 and was then adopted in most other states. Sustained lobbing at a national level subsequently resulted in the Australian federal government, for the rst time, directly providing funding to improve the health of people with intellectual disability in Australia. The lessons learned from this process include: the power of working in partnership with people with intellectual disability, their families and other supports; the need for focussed and sustained professional advocacy; and the importance of powerful allies and serendipity. Conclusions: Policy change, while achievable, is an inexact and at times idiosyncratic process.
Physical Health
Symposium: Changing health policy through research II Health assessment & health screening practice of community-based agencies supporting adults with I/DD in Manitoba S. Shooshtari (shooshta@cc.umanitoba.ca)*, L. Udell, S. Kennedy, H. Ouellette-Kunz, C. Stephens, L. Fenez, J.Verstraete, A. Cornick & K. Dittberner *Departments of Family Social Sciences and Community Health Sciences, University of Manitoba, Canada Aim: We conducted a survey of community-based organizations supporting adults living with Intellectual/Developmental Disabilities (I/DD) across the Canadian province of Manitoba. The main objective of the survey was to learn from the participating organizations regarding their current health assessment/health screening practice for their clients (i.e., adults with intellectual/developmental disabilities). Methods: An on-line survey of all community-based organizations supporting adults living with I/ DDs across Manitoba (urban & rural). Results: A total of 29 respondents completed the survey, representing 18 community-based agencies from urban and rural Manitoba. Of the survey respondents, 65.5% reported that their organization conducts regular health screening for their clients. Only three respondents (10.3%) reported that their organization conducts comprehensive health assessment (CHA) of their clients. Lack of CHA was reported to affect effective individualized health planning. Conclusions: It appears that CHA is not a common practice among community-based agencies supporting adults with I/DDs in Manitoba. Lack of CHA may lead to misdiagnosis or no diagnosis of health conditions affecting persons quality of life.

Symposium: Health reform for people with intellectual disability in NSW, Australia Leading the way- Health reform for people with intellectual disability in NSW, Australia J. Small (jacquels@chw.edu.au)*, L. White & L. Brodie *Sydney Childrens Hospital Network (Westmead), Australia Aim: Early intervention staff play an important role in supporting families through diagnosis of a developmental disability. The aim of this research study was to identify the needs and experiences of early intervention staff in relation to the diagnostic process with view to improving the experiences of families. Method: Five focus groups of 28 participants were held in November 2009 to explore the experiences of early intervention staff and the issues they thought were important for the family during the diagnostic process. Key issues and themes were identied by the facilitator. Results: Concerns were categorised in relationship to the diagnostic assessment. Key themes emerged that included; diagnosis occurs over a period of time, all intervention staff play a role in diagnosis, and diagnostic assessment was generally stressful process for families. Participants recognised the importance of their role but felt that changes to processes, clarication of terminology, and professional development would bring benets to the families they support. Conclusions: There exist signicant unmet needs of early intervention staff, key individuals to support families through the diagnostic process, which if addressed, might positively inuence their longer term adaptation. Metro-Regional intellectual Disability Network: A partnership model for integrated health services for people with intellectual disability in regional and rural NSW B. Chenoweth (brucewillmorechenoweth@gmail.com)*, R. Leitner & R. Lenroot *Developmental Assessment Service, St George Hospital, Sydney Aim: People in regional and rural areas have reduced access to health services. The aim of the pilot is to improve access to specialist health services for children, adolescents and adults with intellectual disability (ID) in regional areas of New South Wales (NSW), Australia. Method: To design a partnership service delivery model that leverages the resources and expertise of a well-developed specialist service in a metropolitan area to support people with ID and their carers living in regional areas, with mutual determination of opportunities for service enhancement. Results: The model is designed on four key elds of activity: (1) telehealth, to reduce the distance barriers to the access to services; (2) capacity building of local services through the provision of educational resources, specialist support and improved networking; (3) community engagement in the design, implementation and formative evaluation of the program; and (4) development of data linkage systems that support coordinated care. Conclusions: In this preliminary report, we demonstrate how an existing metropolitan model for ID health care can be implemented and supported in a partnered regional area. The data on the outcomes of the pilot will inform future implementation and policy development. Specialised clinical service pilots for people with intellectual disability in NSW, Australia S. Durvasula (seeta.durvasula@sydney.edu.au)*, N. Silove, B. Lord, B. Chenoweth & R. Leitner *Centre for Disability Studies, University of Sydney, Australia Aim: To develop specialised clinical health services for children, adolescents and adults with intellectual disability and complex health needs. Method: In the NSW Service Framework to Improve the Health Care of People with Intellectual Disabilities, specialised multidisciplinary health services for people with intellectual disability and complex health needs are proposed. These Tier 4 services would also support mainstream health services to meet the needs of this population. Using the principles of the Service Framework, and addressing local needs, specialised clinical service pilots were developed in three areas of metropolitan Sydney, regional, and rural districts. Results: The principles of Tier 4 services and how the pilots relate to these principles will be discussed. The establishment and preliminary work of two pilot services, Northern Sydney Intellectual Disability Health Team and South West Sydney Disability Specialist Program of the Sydney Childrens Hospitals Network Westmead, will be presented. The third service, Metro-Regional Intellectual Disability Network will be discussed in a separate presentation. Conclusions: In partnership with mainstream health services, specialised clinical services can improve the health and wellbeing of people with intellectual disability.
Physical Health
Symposium: Health reform for people with intellectual disability in NSW, Australia (continued) Framework for Health Services for People with Intellectual Disability in NSW, Australia S. Durvasula (seeta.durvasula@sydney.edu.au)* *Centre for Disability Studies, University of Sydney, Australia Aim: To develop health services for people with intellectual disability that address the current gaps and reduce health inequalities. Method: The evidence for the prevalence of health conditions in people with intellectual disability, and the ability of current health services to meet this need was reviewed. The NSW Ministry of Health and the Department of Human Services Ageing, Disability and Home Care, in collaboration with the NSW Council for Intellectual Disability, developed a Service Framework to Improve the Health Care of People with Intellectual Disabilities. Its development was informed by the evidence and the Legislative and Policy Framework of the State. It was nalised after wide consultation with stakeholders. Results: The Service Framework is based on a 5-tiered model: (1) health policy, (2) primary and community health services, (3) acute health services, (4) specialised intellectual disability health services, and (5) clinical leadership, coordination, education and research. The existing rst three tiers relate to Tiers 4 and 5. Three specialised clinical pilot health services (Tier 4), and the Intellectual Disability Network (Tier 5) have been established. Conclusions: The Service Framework has been developed as an integrated response to address the health needs of people with intellectual disability.
Symposium: Health promotion research Health promotion research in children with intellectual disabilities C. Curtin (carol.curtin@umassmed.edu)*, L. Bandini, R. Fleming & H. Stanish *University of Massachusetts Medical School E.K. Shriver Center,Waltham, Massachusetts, US Health promotion research in children with intellectual disabilities (ID) limited. Signicant work has been done in typically developing (TD) children but little is known about children and adolescents with ID. This symposium will focus on the UMMS-Shriver Centers interdisciplinary program in health promotion research in children with ID. Specically, we will address the modiable risk factors for disease with a focus on physical activity and diet. We will present four research projects that we have recently completed: (1) an observational study examining the physical activity and eating patterns of children with ID and autism ages 311; (2) a pilot walking program for adolescents with ID and autism that was developed using community-based participatory research methods; (3) a demonstration project using a community-based peer-support model to increase tness for adolescents with intellectual disabilities; and (4) a small randomized controlled weight loss trial using family-based behavioural methods to support adolescents with Down syndrome. The symposium will present information on the clinical protocols used in each of these projects, will present the outcome data from each of these studies, and will outline areas for future research.

Symposium: Physical activity and tness: Results of the Health Aging and Intellectual Disability Study (HA-ID) I Physical activity and tness: Results of the Healthy Ageing and Intellectual Disability study (HA-ID) L. Bastiaanse (l.bastiaanse@erasmusmc.nl)* & T. Hilgenkamp *Intellectual Disability Medicine, Dept General Practice, Erasmus University Medical Center, Rotterdam, The Netherlands This symposium will provide insight into outcomes of large-scale epidemiological research into physical activity, tness and bone quality of Dutch older adults with intellectual disabilities. Physical Activity & Fitness was a central theme of the Healthy Ageing and Intellectual Disability study (HA-ID) because of its relevance to independence, health, and well-being. In a cross-sectional design, a nearly-representative population of 1050 clients of three large formal ID services, aged 50 years and over, underwent measurements of physical activity with pedometers, physical tness with a test battery addressing aspects of tness that are relevant in old age (balance, muscle strength, muscle endurance, exibility, coordination, reaction time, cardiorespiratory endurance), and bone quality with quantitative ultrasound (QUS) of the heel bone. At the same time, in a randomized controlled trial design, the effects of an 8-month program aimed at improvement of physical activity and tness were studied in a range of day activity centers of the same consort. Outcomes will presented of rst quantitative and qualitative data, based on valid and internationallyaccepted diagnostic measurements and criteria, in the aging population with intellectual disabilities. The impressive results have radical consequences for health and care policy. Physical activity levels in older adults with ID are extremely low T. Hilgenkamp (t.hilgenkamp@erasmusmc.nl)*, R. van Wijck & H. Evenhuis *Intellectual Disability Medicine, Department of General Practice, Erasmus Medical Center, Rotterdam, The Netherlands Aim: To investigate the levels of physical activity in the rapidly increasing aging population with intellectual disabilities (ID). Method: As part of the study Healthy Ageing with ID study involving 1050 older clients with ID in three Dutch ID services, physical activity levels were measured with a pedometer (NL-1000), which is able to measure reliably at walking speeds of 3.2 km/h or higher. Results: Largely due to physical limitations, low walking speed, or limited understanding, only 268 out of 1050 older adults were able to participate in pedometer measurements. Even in this best group, physical activity levels were low: 83.3% (95% CI 78.787.8) of the participants did not comply with the guideline of 10,000 steps/day, 63.8% (95% CI 57.969.7) had 7500 steps/day or less and 39% (95% CI 32.6 44.5) were sedentary (<5000 steps/day). Conclusions: Physical activity levels in older adults with ID are very low. Because the actual sample was the more functionally able part of the total sample, this result is likely to be an overestimation of the actual physical activity levels in this population. Low physical tness in older adults with ID: Results of the HA-ID study T. Hilgenkamp (t.hilgenkamp@erasmusmc.nl)*, R. van Wijck & H. Evenhuis *Intellectual Disability Medicine, Department of General Practice, Erasmus Medical Center, Rotterdam, The Netherlands Aim: Physical tness is not only a prerequisite for daily functioning, but has a positive inuence on healthy aging as well. Our aim was to investigate the levels of physical tness in the rapidly-increasing aging population with intellectual disabilities (ID). Method: As part of the study Healthy Ageing with ID involving 1050 older clients with ID in three Dutch ID care services, physical tness was measured with eight tests, of which four can be compared with large datasets of the general older population: comfortable walking speed, 30 s chair stand, grip strength and 10 m incremental shuttle walking test. Results: Compared to the general population, tness levels in older adults with ID were always much lower than their peers of the general population. The youngest age group (5059 years) had comparable or even worse results on several tests as 75+ groups or 80+ groups of the general population. Conclusions: When comparing the results of these tests to those of the general population, physical tness in older adults with ID is very low.
Physical Health
Symposium: Physical activity and tness: Results of the Health Aging and Intellectual Disability Study (HA-ID) II Effectiveness of a physical activity program for seniors with intellectual disabilities: Results of a RCT M. Schijndel-Speet (m.vanschijndel-speet@erasmusmc.nl)*, R. van Wijck, H. M. Evenhuis & M. A. Echteld *Intellectual Disability Medicine, Department of General Practice, Erasmus Medical Center, Rotterdam, The Netherlands Aim: This study evaluated the effectiveness of a day-care program for improving physical activity (PA), tness and health in adults older than 45 years with mild or moderate intellectual disabilities (ID). Method: The theory-based program included motivational strategies such as education, tailoring and modeling. The PA program was based on evidence-based guidelines and consisted of a variety of suitable physical activities such as Nintendo Wii games, walking and gymnastics. Ten participating day-care centers of three health care organizations were randomized and 81 older adults with moderate or mild ID participated in the program three times a week during eight months. As controls, 70 older adults with ID participated as and received care as usual. After baseline, level of physical activity was measured after 4, 8 and 12 months. Other effect evaluations were performed after 8 months. Results: There were 66 participants and 68 controls who completed the study successfully. We will present the programs effectiveness in terms of number of steps per day, tness, ADL, blood pressure, cholesterol, and depressive symptoms. Conclusions: Results from this innovative study can be used to improve PA among people with ID and to communicate the importance of PA programs provided by health care organizations. Dos and donts of a physical activity program for seniors with intellectual disabilities: A process evaluation M. van Schijndel-Speet (m.vanschijndel-speet@erasmusmc.nl)*, R. van Wijck, P. van Empelen, H. M. Evenhuis & M.A. Echteld *Erasmus Medical Centre, Rotterdam, The Netherlands Aim: The aim of this study was to evaluate the participation in and implementation of a program for improving physical activity in older adults with mild or moderate intellectual disabilities (ID). Method: In ve day-care centers, motion therapists and day-care center staff executed the program three times a week during eight months. Components of our process evaluation included: recruitment, maintenance, context, resources, implementation, reach, barriers, exposure, initial use, continued use, and contamination. Executers lled in registration forms during the intervention period. Participants with ID, program leaders and managers were interviewed and/or received a written questionnaire at the end of the intervention period. Results: Fifteen of the 81 participants dropped out, mostly caused by behavioral (6) or health-related (4) reasons. Most seniors enjoyed participating in the program. The day-care program we developed was very applicable for seniors with ID and feasible according to the program leaders. Detailed information about successful and less successful elements of the program will be presented following the components of our process evaluation. Conclusions: Determinants for a successful implementation of a physical activity program as revealed in this study can be used in future projects aiming at improving healthy lifestyles among people with ID. Prevalence and associated factors of osteoporosis in older adults with intellectual disabilties S. Mergler (s.mergler@erasmusmc.nl)*, L. P. Bastiaanse, M. A. Echteld & H. M. Evenhuis *Erasmus Medical Center, Rotterdam, The Netherlands Aim: People with intellectual disabilities (ID) are at risk for developing osteoporosis and fractures. Quantitative ultrasound (QUS) has proven to be a feasible diagnostic instrument for screening bone quality in people with ID. Prevalence of low bone quality was determined in a representative population of older people (>50 yrs) with ID. Method: Bone quality was assessed with QUS (Lunar Achilles, type Insight, GE Healthcare) in 757 people. Both Z-score, outcome compared to age related reference values, and T-score, outcome compared to young adult reference values, were calculated. Low bone quality was dened as either a T-score lower than 2.5 in people younger than 70 years or a Z-score lower than 1.0 in people aged over 70. Results and conclusions: In comparison to the prevalence of low bone quality in the general population over 55 years of age in the Netherlands (e.g. 5.2% in males and 16.6% in women) low bone quality is more frequently present in older people with ID.

Symposium: Improving health promotion and access in practice A community approach: Improving the health and wellness of people with intellectual disabilities K. Manning (knn52@unh.edu)*, J. E. Hahn & O. Barr *Department of Nursing, University of New Hampshire, US Aim: Globally the population of individuals with intellectual disability (ID) continues to expand. In this study that was conducted in Northern Ireland, nurses were asked about their perceptions of the health and access to healthcare for persons with intellectual disability from younger to older adulthood. This study additionally explored how individuals with intellectual disability perceive their own health. Method: This descriptive qualitative study utilized in depth interviews in two phases. Phase One involved adults with ID (N = 13) while Phase Two involved nurses working with persons with ID (N = 8). Qualitative data analysis was used to categorize data and develop theoretical concepts and the relationship among them. Results: Themes that emerged include that people with intellectual disability are not so healthy. Barriers and facilitators of accessing mainstream healthcare services were identied. Nurses in Northern Ireland work in various settings are working to create healthy and fullling lives for people with ID. Conclusions: The results of this study imply that a community effort must take place to allow individuals with intellectual disability to be invested in their health and have interdependent reliance on their families, nurses, and local community. Enhancing access to primary health care for people with intellectual disabilities by support of health information exchange M. Mastebroek (m.mastebroek@elg.umcn.nl)*, J. Naaldenberg, F. van den Driessen Mareeuw & H. van Schrojenstein Lantman de Valk *Radboud University, Nijmegen Medical Centre, Nijmegen, The Netherlands Aim: Health inequalities in people with intellectual disabiities (ID) are partly determined by barriers in accessing primary health care amenable to interventions. An operational framework of access to health care for people with ID focusing on health information exchange can provide insight into potential intervention strategies. In current research we use an intervention method aimed at enhancing access to primary care by supporting health information exchange between GPs, people with ID, and their support system before and after medical consultation. Method: An inventory and analysis of literature on various existing approaches to the concept of health care access in general and for people with ID in particular. Results: The conceptualization of access to health care differs concerning what is referred to by access and the range of factors inuencing it. Conclusions: In the literature, theoretical models of health care access, as determinants of health inequalities, overlap and there is lack of a uniform framework. Applicable concepts of health care access are needed to translate theory into practice. Identifying the role of health information exchange in access to primary health care raises opportunities for development of new intervention methods. Consequences of our choices for intervention so far will be discussed. Health promotion for people with intellectual disabilities: A systematic review of available literature J. Naaldenberg (j.naaldenberg@elg.umcn.nl)*, H. M. J. van Schrojenstein Lantman de Valk & M. Mastebroek *Dept of Primary and Community Health Care, Radboud University Nijmegen Medical Centre, Nijmegen, The Netherlands Aim: Health promotion strategies that aim to reduce risk factors for secondary conditions and improve environments that support healthy behaviour are important to people with intellectual disabilities (ID). More information about existing health promotion strategies for people with ID is useful to identify knowledge gaps (i.e., are all relevant factors for health disparities addressed?). The objective of this study therefore is to generate an overview of health promotion strategies for people with ID and general characteristics of these strategies. Method: A systematic review of existing literature originating between 2001 and 2011 was conducted. The PUBMED and SCOPUS databases were searched for keywords relating to health promotion and intellectual disabilities in both abstracts and titles of journal publications published in English. Results: An overview of characteristics, such as addressed health determinants, measures of success, types of research designs, targeted groups and included settings, will be presented. Conclusions: The results will provide insight in to what extent health promotion strategies published in recent literature match the most prevalent health disparities. This could help in identifying relevant knowledge gaps. Implications for changing health policies will be discussed. Symposium: Health promotion and education
Physical Health
Identifying gaps in perceived ability: Promoting exercise in young adults with disabilities B.Terrill (bterrill13@gmail.com)*, P. DiNapoli & C. Williams-Barnard *Department of Nursing, University of New Hampshire, US Aim: The purpose of this study was to describe the perceived ability in making health decisions regarding exercise between young adults with disabilities and their parents. Method: The study design used a mixed-methods approach. The convenience sample consisted of (N = 10) young adults with disabilities and (N = 10) parents of young adults with disabilities. Qualitative data were gathered using a preliminary structured interview guide for young adults with disabilities consisting of several short answer questions. Quantitative data were gathered from the parents of young adults with disabilities by using Penders Health Promotion Questionnaire. Results: Data analysis began with simple descriptive statistics. The qualitative data the structured interviews of the adolescents were transcribed and evaluated for themes. The quantitative data the parents questionnaires were analyzed by aggregating data for frequencies and descriptive statistics. The qualitative data were then compared with the quantitative data to identify similarities and differences in perceptions. Conclusions: Comparison of responses among dyads provides insight about disparities that exist between what parents perceive their children with disabilities can decide about health, and the childrens own perception about their own abilities in making health decisions. Adults with intellectual disabilities: Nursing interventions to promote staying well and healthy! J. Earle Hahn (joan.hahn@unh.edu)* *Department of Nursing, University of New Hampshire, US Aim: People with intellectual (ID) face health access issues in preventive care. This includes the lack of universal basic nursing education that prepares nurses to address the needs of people with disabilities. Standardized nursing language has been used to dene specialty nursing practice. The aim is to describe nursing interventions as documented in an in-home preventive intervention that shows promise in reducing health risks and promoting healthy aging. Method: Nursing interventions were recorded according to the taxonomic structure of the Nursing Intervention Classication (NIC) system. Results: The three most frequent nursing interventions were health education (96%), nutrition management (83%), and weight management (69%). The next most frequent nursing intervention medication management included interventions aimed at preventing adverse outcomes related to medications (e.g., not getting rells on time, needing to see a health care provider for medication adjustments). Less frequent interventions speak to those that are not miss interventions to prevent serious health issues. These nursing interventions mirror those identied by nurses who specialize in nursing with people with ID as well as key health issues identied among people with ID. Conclusion: These ndings can be instrumental in targeting nursing education to promote health among adults with ID. Women with intellectual disability and their body image J. Conder (jenny.conder@otago.ac.nz)*, M. Crowe & B. Mirn-Veitch *Centre for Postgraduate Nursing Studies, University of Otago, NZ Aim: The research explored how women with intellectual disability perceived their body and understood the relationship between their perception and strategies for weight control and nutrition. This paper reports on initial ndings related to the womens responses to questions about their body image and a data collection tool of a scale drawing of body shapes. Method: Semi-structured interviews were conducted with twenty-ve women. In addition to responses to questions the women also completed the task of identifying the shape most like them and the shape they most desired to be from a series of drawings. A general inductive approach was used to analyse the data. Results: While some women could accurately choose their current body shape, a number struggled with the task. Most women had a positive view of their body, linking it to function more commonly than aesthetic properties. However, asked if there was some part in particular that they liked, a number could identify a feature. For those women who were dissatised with their body, weight or mobility were implicated. Conclusions: These early ndings warn of the necessity to explore with individual women how they see and understand their body when discussing health implications such as weight control.

Symposium: Womens health and intellectual disability Breast cancer knowledge among women with intellectual disabilities and their experiences of receiving breast mammography L.Taggart (l.taggart@ulster.ac.uk)*, M.Truesdale-Kennedy & S. McIlfatrick *University of Ulster, Northern Ireland Aim: Despite the efforts of government policies and documents to ensure equal access to improve health screening for people with intellectual disabilities (ID), the uptake for breast mammography in this population still remains lower than that of the general population. This study explored the understanding of breast cancer and experiences of breast mammography among women with ID. Method: Four focus groups were undertaken with 19 women with ID all of whom had received a breast mammography. Results: The womens knowledge of breast cancer including associated risks, preventative factors and signs and symptoms were extremely limited. Although these women expressed a positive attitude towards their experiences of breast mammography, they also described negative feelings of fear and anxiety, attributed to a lack of understanding about the screening process. A lack of information and embarrassment were identied as the main barriers to screening for this group. Conclusions: This study highlights the need for accessible multi-format information in order to facilitate health promotion and education in women with ID, their family carers, and the healthcare staff working with this target group, in order to enhance the knowledge and awareness of breast cancer and screening. A Canadian population based study of cervical and breast cancer screening in women with developmental disabilities Y. Lunsky (yona_lunsky@camh.net)*,V. Cobigo, H. Ouellette-Kuntz, R. Balogh, F. Leung & E. Lin *Centre for Addiction and Mental Health, University of Toronto, Ontario Aim: The aim of this study was to describe cancer screening utilization by women with developmental disabilities (DD) in Ontario, Canada compared to other women in Ontario. Research from other countries has suggested lower uptake of cervical and breast cancer screening in women with DD compared to other women, but these studies have failed to take a population approach and control for variables such as income, age, and co-morbidities. Method: A population-based study was conducted as part of the Healthcare access research in developmental disabilities program (H-CARDD) by linking various health administrative databases and registries. Two cohorts were created from a random sample of 20% of the general population: (1) a cohort of women with DD, and (2) a cohort of women without DD. Results: At the population level, Ontario women aged 20 to 69 with DD were nearly 2.5 times less likely to receive a Pap smear, and women aged 50 to 69 were 1.5 times less likely to have a mammogram, when controlling for demographic variables. Conclusion: Findings suggest that Canadian women with DD experience inequities in their access to cancer screening. Public health interventions targeting this population should be implemented. Health surveillance of women with and without intellectual disability in Ohio S. Havercamp (Susan.Havercamp@osumc.edu)* & H. M. Scott *Ohio State University Nisonger Center, US Aim: The aim of the study was to compare the health status, health risk behaviours and access to healthcare of women with intellectual disability relative to other women with and without disabilities in Ohio. Method: We report NCI or BRFSS data across three groups of Ohio women: no disability (N = 4,285), disability (N = 1,897) and intellectual disability (N = 221). Results: Women with intellectual disability were signicantly more likely to report fair or poor health (poor health RR = 9.7), lead a sedentary lifestyle (RR = 2.9), and to be obese (RR = 1.4). Women with intellectual disabilities were signicantly less likely to report adequate emotional support (RR = 5.7) or to receive appropriate reproductive care such as a pap smear (RR = .4) or mammogram (RR = .5). Conclusions: Women with intellectual disabilities and women with other disabilities reported greater health risks, including obesity, sedentary lifestyles, and inadequate emotional support. Women with ID have health care needs similar to women in the general population, yet there is a serious lack of adequate reproductive health care in this population. Symposium: Nutrition and feeding
Physical Health
Health and well-being for adults with intellectual disabilities: Nutrition for individuals living in community residential settings M. Edwards (meaghan@mukibaum.com)*, N. Baum & M. Holder *MukiBaum Treatment Centres, Ontario, Canada Aim: Research in the eld has indicates that individuals with intellectual disabilities living in community residential settings tend to experience health problems and nutritional deciencies. This presentation will explore the design and initial results of a nutritional intervention undertaken with the intent to improve nutrition for individuals living in such a setting. Method: Five (5) group homes serving 22 individuals participated in the study. An analysis of weekly grocery lists was carried out over 6 months, with results suggesting that the diets provided were lacking in essential nutrients. An intervention that included staff training and daily tracking of meals was carried out. Weekly staff feedback measures were implemented to maintain effects of training. Nutritional inputs were measured through the analysis of meals and the tracking of body mass index over a period of two years. Results: Nutritional input measures were signicantly improved and Body Mass Index was decreased signicantly. Conclusions: The combination of effective training, on-going monitoring and frequent communication with staff seems to have positive impacts on nutritional status of meals provided in group homes. Future directions include program planning and the further incorporation of Quality of Life principles. Food for thought: Nutrition knowledge of paid caregivers in community J. Sisirak (jsisirak@uic.edu)*, B. Marks & Y. Ching Chang *Rehabilitation Research and Training Center (RRTC) on Aging with Developmental Disabilities, University of Illinois at Chicago, US Aim: Research related to nutrition knowledge among caregivers in community-based organizations (CBOs) supporting people with ID is limited. The purpose of this study was to examine nutrition knowledge and demographic differences among a cross-section of caregivers (n = 160) working in community homes in two different states in the United States. Method: Knowledge was evaluated with four categories including: (1) nutrition recommendations, (2) nutrient knowledge, (3) healthy food choice, and (4) diet-disease relationship. Results: Only 73% were able to correctly identify nutrition recommendations, 61% nutrient knowledge, and 77% healthy food choices. The most serious gap was identied between diet and disease relationship, resulting in only 28% correct answers. Total nutrition knowledge resulted in 61% of correct answers. Caregivers who had worked with individuals with ID the longest had signicantly higher levels of nutrition knowledge. There were no gender and education differences and nutrition knowledge. Given that food preparation and menu planning are mostly staff responsibilities even in residential settings, caregiver nutrition knowledge can greatly inuence the food choices of individuals with ID. Conclusions: Providing nutrition training and education to staff is one of the rst steps in improving dietary intake of individuals with ID. Continuity of care: A multi-site case study of people with intellectual disabilities living in the community B.Temple (bev_temple@umanitoba.ca)* *University of Manitoba,Winnipeg, Manitoba, Canada Aim: The aim of this study is to assess key informants understanding of the specic feeding team recommendations provided, based on a feeding team assessment for three clients in their care. Method: The feeding team, consisting of dieticians, occupational therapists and speech therapists, were interviewed about the new feeding assessment of three clients. The key people (e.g. direct care providers, administrators, family) involved in support of that person with intellectual disabilities (ID) living in the community are interviewed (n > 10/case). Direct observations of the homes and day programs are also documented. By using a case study approach we gained a greater understanding of how new care plans are communicated within an agency and how the recommendations are carried out. Qualitative data analysis provides greater understanding of the experiential knowledge of the key informants. The cross-case analysis affords further understanding of common themes and unique to cases. Results and Conclusions: This presentation will reveal ndings from within each case and across cases to illustrate the types of communication required within agencies and across the agencies supporting ageing people with ID living in the community. Barriers and facilitators to continuity of care will be discussed and recommendations for policy and practice are provided.

Symposium: Health and mental health aspects of adults with Down syndrome Health and mental Health aspects of adults with Down syndrome M.Tasse (marc.tasse@osumc.edu)* *The Ohio State University Nisonger Center UCEDD, Columbus, Ohio, US Aim: We will compare and contrast health status and indicators as well as the accessibility to healthcare services of adults with Down syndrome to others with and without disabilities. We will discuss the presence of problem behaviours, mood disorders, and stress levels in this population and make comparisons to other adults with developmental disabilities. Method: Many of these data were collected across a state-wide sample of adults with Down syndrome. Results: These data will be analyzed and we will report on prevalence of problem behavior, mood disorders and stress. We will analyze our data to explore the presence of health disparities as well as access issues, rates of obesity, diabetes, celiac disease, and other health metrics. Conclusions: Our symposium will present on new data examining the behavioural, mental, and physical health characteristics of adults with Down syndrome. Research has shown that persons with Down syndrome may be more vulnerable to certain problem behaviours, stress and mood disorders as well as specic health conditions. At the same time, there may be data indicating protective factors in persons with DS against certain forms of cancer. This symposium will explore all these issues.
Physical Health
Symposium: Health and mental health aspects of adults with Down syndrome (continued) Mood and behavior of adults with Down syndrome as reported by caregivers B. Benson (betsey.benson@osumc.edu)* *Nisonger Center UCEDD, Ohio State University, Columbus, Ohio, US Aim: To examine behavioural and mental health issues of adults with Down syndrome as reported by caregivers. Method: Data were collected for patients presenting to an Adult Down Syndrome Clinic. Caregivers completed the Aberrant Behavior Checklist-Community, the Stress Survey Schedule for Persons with Developmental Disabilities, the Life Experiences Scale, and the Anxiety, Depression and Mood Scale prior to the initial clinic visit. Results: The results presented will include associations among measures of mood and behavior, trends related to age, gender, and level of intellectual disabilities, and comparisons of these data to other adults with developmental disabilities. Conclusions: The identication of behavioural and mental health issues can guide treatment planning as well as help dene targets for prevention initiatives.
Health and access to healthcare for Ohioans with Down syndrome S. M. Havercamp (Susan.Havercamp@osumc.edu)*, M. J.Tasse, B. A. Benson, M. Manikam, Dawn Allain & M. Grover *Nisonger Center, Ohio State University, Columbus, Ohio, US Aim: We will report on the health conditions, mental health status, and access to healthcare of adults with Down syndrome living in Ohio. Method: Adults with Down syndrome and their families were recruited through advocacy organizations in Ohio to complete an online survey of health in adults with Down syndrome. The survey assessed physical health diagnoses including cancer, mental health diagnoses, and behaviour problems. Access to the primary and specialist healthcare was also measured. Results: Data will be reported on 375 adults with Down syndrome. We will report on the prevalence of physical and mental health problems and access to healthcare in this relatively large sample of adults. Conclusions: Our symposium will present new data examining the behavioural, mental, and physical health characteristics of adults with Down syndrome. Research has shown that persons with Down syndrome may be vulnerable to certain problem behaviours, stress and mood disorders as well as to specic health conditions. We will explore the barriers to healthcare that adults with developmental disabilities experience.
Physical health and well-being of adults with Down syndrome M.Tasse (marc.tasse@osumc.edu)*, S. Havercamp, B. Benson, K. Manickam, D. Allain & M. Grover *Nisonger Center UCEDD, Ohio State Universiy, Columbus, Ohio, US Aim: We will present health information on adults with Down syndrome regarding their health status and presence of disease and secondary health conditions. We will compare their health indicators to other adults with and without developmental disabilities. Method: We have conducted physical exams on a sample of 75 adults with Down syndrome. In addition to the physical exam, we did blood analyses looking at: blood sugar, cholesterol levels, triglycerides, and celiac disease. We also collected a detailed family history on each participant. Results: These data will be analyzed and we will report on BMI, trunk size, diabetes, cholesterol, blood pressure, triglycerides, celiac disease, etc, and compare these health indicators to other adults with and without developmental disabilities. Conclusions: Research has shown that adults with Down syndrome may be more vulnerable to certain health problems including obesity, diabetes, celiac disease, sleep apnea, etc. These results will provide helpful health status information and provide us with possible avenues of recommendations for areas of needed improved healthcare.

Symposium: Perspectives in undergraduate and postgraduate training Using the electronic medium for training health care students in developmental disabilities S. Morris (susan_morris@camh.net)*, J. Weiss & T.Virani *Dual Diagnosis Program, Centre for Addiction and Mental Health, University of Toronto, Ontario, Canada Aim: Health professionals often do not understand the unique health needs of individuals with developmental disabilities. Curriculum is needed in academic health science programs to address this gap. Perspectives is an online and seminar-based curriculum in interprofessional education (IPE) for students in the health professional disciplines. The current presentation will highlight some of the innovative IPE content and delivery methods and the feedback from stakeholders following two years of running the program. Method: The initiative was a collaboration between 3 academic institutions, 10 faculties, and 5 practice settings. A multi-pronged data collection strategy was used to evaluate processes and outcomes related to student achievement of core IPE competencies, feedback of students and facilitators to the on-line cases, and barriers and enhancers to the development of competencies. Results: Students (162) in both the inperson seminars and online cases overwhelmingly reported positive and consistent development across all IPE core competencies targeted. Students reported similar self-assessments regarding knowledge gains and highly recommended the program. Conclusions: The on-line interactive medium is eminently suitable to IPE related to developmental disabilities. Userfriendly discussion capability (including live chats, open ended discussion, student led discussions) must be considered. Sustainability is enabled with ongoing staff and nancial resources. The Stealth Method: Embedding health care for persons with ID in the Nijmegen medical school curriculum M. Meijer (buikmeijer@hetnet.nl)*, H. van Schrojenstein Lantman de Valk *Radboud University Nijmegen Medical Centre, The Netherlands Aim: Health prots for people with intellectual disabilities (ID) can be increased by training doctors in their specic health needs and in communication. All doctors encounter people with intellectual disabilities in their practice. In the curriculum of medical schools in the Netherlands scarce attention is paid to this group of patients who consume 8% of the national health care budget. Method: With the establishment of the chair health care for people with intellectual disabilities at Radboud University Nijmegen Medical Centre in 2009, an opportunity has been created to embed this eld in the curriculum of Nijmegen medical school. Results: At this moment medical students in Nijmegen in every study year encounters the eld and/or persons with ID. For example in the rst year simply by adaptation of cases. In the second study year a training program has been incorporated concerning determinants of health. In the master period, a training program is developed as part of the Primary Care internship. Conclusions: Within a short time in Nijmegen a good embedding of the eld has been realized. In the presentation the current embedding will be further commented upon. Quantifying the impact of 10 years ID Medicine in the Netherlands F. Ewals (f.ewals@erasmusmc.nl)* *Erasmus Medical Center, Rotterdam The Netherlands Aim: Improving the health of people with intellectual disabilities (ID) was the main purpose of recognizing the medical specialism ID Medicine by the Netherlands government. In 2000 this formal recognition was followed by the start of a 3 three-year training program. Now, 10 years later, we have studied the overall impact of these decisions. Method: Methods included: (a) comparison of the number of ID Medicine-related papers in general medical journals in the Netherlands before and after 2000; (b) trend analysis of the number of students that followed the training program; (c) review of developments in availability of specialized medical care; and (d) a survey among three groups of ID physicians (former students/supervisors/ ID physicians not involved in the training program) to identify differences in professional activities. Results: In all aspects we found an increase in numbers, respectively a tendency towards more specialized instead of general medical care. Conclusions: Recognition of ID Medicine as a medical specialism generated signicantly more attention to the specic health problems of people with ID and a higher level of professionalism of the ID physician. The inuence of this on the health of people with ID is unknown. Symposium:Training in health care
Physical Health
What about staff? Impact of HealthMatters Train-the-Trainer for direct support professionals B. Marks (bmarks1@uic.edu)*, J. Sisirak & Y. Ching Chang *Rehabilitation Research and Training Center (RRTC) on Aging with Developmental Disabilitie, University of Illinois at Chicago, US Aim: Health promotion research among staff in community-based organizations (CBOs) serving adults with intellectual and developmental disabilities (I/DD) is limited. The HealthMatters Train-the-Trainer Workshop teaches staff to implement health promotion in CBOs. This study examines its impact on staff health status, knowledge, self-efcacy, and behaviour. Method: Forty-eight staff, (83% females, 17% males, M age = 38.3 years) were randomized into intervention (n = 28) and control (n = 20) groups. The intervention group received an 8-hour Health Promotion Train-the-Trainer Program immediately before teaching a 12-week, 3 days/week, Health Promotion Program to adults with I/DD. Results: Assessments conducted immediately before and after the 12-week program demonstrated signicant improvements in social/environmental supports for nutrition (F = 4.92, p = .032), exercise (F = 6.58, p = .014), nutrition outcome expectation (F = 8.87, p = .005), fruit and vegetable intake (F = 13.62, p = .001), higher ideal fruit and vegetable intake (F = 11.25, p = .002) and nutrition stage of change (F = 13.62, p = .05) in the intervention group compared to controls using ANCOVA. Conclusions: Results support the need to develop health promotion programs and policies for staff supporting adults with I/DD to improve their health and behaviours. Observing communication in hospital for adults with I/DD and little or no speech: Communication needs, methods and supports to improve care B. Hemsley (b.hemsley@uq.edu.au)* *The University of Queensland, The University of Newcastle, Australia Aim: Adults with intellectual disabilities or developmental disorders (I/DD) go to hospital more often and stay for longer periods than adults without I/ DD. As a result of their communication disability, they face a three-fold risk for preventable and harmful patient safety incidents in hospital. However, little is known about their communication needs, methods, and any barriers or strategies to effective communication from the perspectives of nurses, paid carers, and adults with I/DD. Method: Following interviews with 45 key stakeholders to inform an observation protocol, we observed two adults with I/DD in interaction with hospital staff and paid carers. Results: Interviews revealed a core set of communication needs, the impact of time upon interactions, and the roles of paid carers in supporting communication in hospital. Observations revealed common care interaction points that provided the context for communication and a range of communication needs, methods, barriers and strategies arising in these contexts. Conclusions: Results will inform preparation for hospital care and policies for meeting the needs of patients with developmental communication disabilities and high support needs. Methodological issues surrounding observation of these adults will be discussed, along with directions for new research exploring patient satisfaction, hospital experiences, and patient safety. Increasing medical students awareness of barriers to comprehensive healthcare in adults with intellectual disability M. Lane (m.lane5@uq.edu.au)*, M.Taylor, M. Ewin, J. Schafer, G. Mitchell & N. Lennox *The University of Queensland, Brisbane, Queensland, Australia Aim: To increase medical students awareness of barriers to comprehensive healthcare in adults with intellectual disability (ID) by early exposure to this cohort of patients. Adults with ID have high rates of health problems leading to reduced life expectancy by up to 20 years. Medical care is frequently suboptimal. Communication barriers between patients, doctors and carers are often cited as major contributing factors to this health inequality. Method: Second-year medical students interviewed patients, carers and family members, then observed their patients annual comprehensive health assessment appointment with the general practitioner. Students acted as an advocate for their patient if appropriate. Assessment was by personal reective essay. Face-to-face interviews were conducted. Results: A pilot project was completed in 2011, with students reporting improved communication skills and self-condence as well as personal satisfaction and enjoyment from participation. They noted that barriers to healthcare are multifactorial and may include both healthcare system and provider. Conclusions: Participation in this project allowed students to interact closely with adults with ID and their carers, thus exposing students to concepts of advocacy, collateral history taking, modied communication skills, and increasing their awareness of barriers to comprehensive healthcare.

Symposium: BMI and physical tness Body Mass Index of adults with intellectual disability by world region V.Temple (vtemple@uvic.ca)*, J. Foley & M. Lloyd *School of Exercise Science, Physical and Health Education; University of Victoria, BC, Canada Aim: Our aim was to describe the BMI status of adult Special Olympics participants by world region and gender. Additionally, the general inuence of age and gender on overweight/obesity of all participants was explored. Method: This study involved secondary analysis of the Special Olympics International Health Promotion database. A total of 11,643 (7150 male and 4493 female) Special Olympics BMI records were available after data cleaning. BMI was computed by gender and world region in the following categories: Underweight < 18.5, Normal range 18.524.9, Overweight 25.029.9, and Obese > 30. Logistic regression was used to examine whether age and gender were associated with the likelihood of being overweight/obese (BMI 25.0). Results: Overall, 5.5% of the sample was underweight, 36.1% in the normal range, 24.7% overweight and 32.1% obese. Levels of overweight/obesity were very high in North America. Both age and gender were signicant predictors of overweight/obesity (odds ratios 1.06 and 0.59, respectively). Conclusions: Our ndings demonstrate that Special Olympics participants have high levels of overweight and obesity, particularly among women and those from North America. It is crucial that those who coach, care for, and live with individuals with intellectual disability increase efforts to promote healthy weight status. International BMI comparison of children and youth with intellectual disabilities M. Lloyd (meghann.lloyd@uoit.ca)*,V.Temple & J. Foley *University of Ontario Institute of Technology, Grandview Childrens Centre, ON, Canada Aim: The purpose of this study was to describe the BMI status of children and youth with intellectual disabilities by world region, gender and age. Method: A total of 9,678 children and youth were available from the Special Olympics International Health Promotion database after data cleaning (6,084 males and 3594 females). Children were dened as 811 year olds (n = 2035) and youth were dened as 1218 year olds (n = 7643). BMI prevalence rates were computed using the IOTF cut-points, and logistic regression was used to determine if either age or gender was associated with being overweight or obese. Results: Overall, approximately 30% of the sample was overweight or obese; however, the obesity rates in North America were much higher, particularly in the girls with 54.3% (CI = 51.457.2) being overweight or obese. Logistic regression results indicated that overall both age (odds ratio = 1.02, p = .039, CI = 1.001.03), and gender (odds ratio = .77, p = <.001, CI = .71.85), were signicant predictors. Conclusions: BMI status is a signicant indicator of health, and these ndings suggest it is critical that health professionals increase health promotion efforts, including physical activity and healthy eating behaviours for children and youth with intellectual disabilities. Follow up study of physical tness in persons with severe intellectual and visual disabilities A. Waninge (alywaninge@visio.org)*, R. van Wijck, B. Steenbergen & C.P. van der Schans *Royal Dutch Visio De Brink,Vries, The Netherlands Aim: As a sufcient physical tness level improves health, the purpose of our study was to gain insight into changes in physical tness levels of persons with severe/profound intellectual and visual disabilities (SIVD) over four years. Method: 45 persons with SIVD and GMFCS levels I and II were subjected to repeated measurements of the following physical tness tests: Body Mass Index (BMI), waist circumference, 6-minute walking distance, adapted Shuttle Run Test and modied Berg Balance test (mBBS). Changes in physical tness were assessed by paired T-test, Wilcoxon signed rank tests, and repeated measurements analysis. An Independent T-test was performed to analyse group differences according to motor level. Results: Over a period of 4 years no signicant changes in BMI, waist circumference and outcomes of the adapted Shuttle Run Test and the 6-minute walking distance were found. However, a signicant decrease in balance scores using the mBBS was shown. This decrease predominantly occurred in persons with the highest GMFCS level. Conclusions: The results show that future interventions should focus on improving balance in persons with SIVD. Symposium: Falls in people with intellectual disability
Physical Health
Development of a video-based balance scale for people with intellectual disability L. A. Hale (leigh.hale@otago.ac.nz)* *University of Otago, New Zealand Aim: Many standardized measures of balance are not suitable for people who are unable to comprehend the tests requirements. We report on the development of a video-based balance measure for people with intellectual disability. Method: Four common motor tasks that can cause instability were identied based on stakeholder observations and discussions. People are video-taped performing these tasks and the recordings are then rated using standardised scoring criteria. The test was piloted with ten people in a clinical setting and 17 people in a community setting. The inter-rater reliability of the scoring system was evaluated with 11 and 8 physiotherapists, respectively, for each setting. Concurrent validity was assessed against Tinnetti Gait and Balance Measure, Gait Abnormality Rating Scale and Berg Balance Scale. Results: Scores suggested no ceiling or oor effects if participants were known to be at risk of falling. There was good inter-rater reliability (ICC: 0.81) in a clinical setting but reduced reliability in a community setting. Concurrent validity was poor to moderate. Conclusions: The new scale shows promise as a test of balance and may be useful in trials assessing the effectiveness of fall prevention programmes for people with intellectual disability. Prospective study on falls in elderly with mild to moderate intellectual disabilities L. Enkelaar (l.enkelaar@reval.umcn.nl)*, E. Smulders,V. Weerdesteyn, H. van Schrojenstein-Landman de Valk & A. Geurts *Department of Rehabilitation, Radboud University Nijmegen Medical Centre, The Netherlands Aim: Fall-related injuries occur more often in people with intellectual disabilities (ID) compared to the general population. Little is known about the risk factors for falls in people with ID. The aim of this study was to prospectively study falls in elderly with mild to moderate ID. Method: Ninety older people with mild to moderate ID were included (mean age 63 8 years). Possible risk factors for falls were derived from comprehensive baseline assessments on motor, behaviour, social and cognitive level. Falls were monitored with calendars and weekly diaries. When a fall occurred, circumstances and consequences of falls were collected with a fall incidence questionnaire. Results: Baseline assessments were performed in 78 people and a one year follow-up with fall registrations was completed with 75 people. Thirty-seven people experienced at least one fall. Falls usually occurred in familiar surroundings during the day, both inside and outside. Causes of falling were tripping, slipping and loss of balance. Final analyses on risk factors for falls are currently being conducted and will be available at the time of the conference. Conclusions: It was possible to prospectively monitor falls in elderly with mild to moderate ID. Fall risk factors are currently being determined. An intervention to monitor and reduce fall rates among adults with intellectual disability C. Noblett-Dutra (courtney.noblett@umassmed.edu)*, A. Bonardi, E. Lauer & S. Oxx *University of Massachusetts Medical School, Massachusetts, US Aim: The Massachusetts Department of Developmental Services (DDS) Screen-Train-Observe-Prevent (S.T.O.P.) Falls pilot aimed to reduce both risk and rates of preventable falls in adults with intellectual disability through critical incident analysis training and falls risk assessment. Method: Five community agencies tracked and assessed all falls, regardless of injury, experienced by program participants for one baseline month, and six months after staff training intervention. Post-fall, staff recorded logistics, preceding symptoms, activities during the fall, and contributing environmental factors. Ongoing support was provided to agencies to prevent changes in monitoring behaviour after training. Results: This intervention showed a statistically signicant 33% decrease in rate of falls (R.R. = 1.50, 95% CI: 3.37, 7.49) and in the proportion of people who fell (2 = 4.32, p = 0.037) compared to baseline (N = 811). Several factors were signicantly associated with increased rates of falls, including participants who experienced one or more falls at baseline (O.R. = 5.0, 95% CI: 3.37, 7.49) or who took 4 or more prescription medications at baseline (O.R. = 2.4, 95% CI 1.21, 4.97). Other results include correlated fall risk factors and demographic factors associated with falls. Conclusions: Fall risk factors and causes can be positive affected through staff training, increased awareness, and improved fall assessment skills.

Symposium: Health care utilization and safety Health care for people with intellectual disabilities in Europe F. Scholte (Presented by F. Ewals) *MAMH European Association of Intellectual Disability Medicine Aim: This presentation compares the present state of health care in different countries with documents outlining conditions for good medical care for people with intellectual disabilities. Method: In Europe different initiatives have been taken to formulate the conditions for good medical care for people with intellectual disabilities. Standards and guildelines have been documented in The European Manifesto Basic Standards of Health Care for People with Intellectual Disabilities (2003); Report on the consultation for the commission communication on health inequalities of the European Union (2009); and The Declaration on the Health of Children and European Young People with Intellectual Disabilities and their Families (2010). The latter document was an initiative of World Health Organisation Europe and was accepted by all 53 European countries. Results and Conclusions: All these documents emphasize the central role of mainstream health provisions. However, the accessibility of these services need to be improved and health professionals need education in intellectual disability and in the common health problems people with intellectual disability can have. Besides that specialised services are needed to support mainstream services and sometimes temporarily take over (a part) of the health care. Health care utilisation by adults with an intellectual disability ageing in Ireland P. McCallion (mcclion@albany.edu)*, E. Burke, E. McGlinchey, J. Swinburne & M. McCarron *Intellectual Disability Supplement to the Irish Longitudinal Study of Ageing in Ireland, Ireland Aim: To examine patterns of health care utilisation by older adults with intellectual disabilities (ID) in Ireland. Method: First wave questionnaires for the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) included questions on demographics, health, health utilization, medication usage, ADL/IADLs status and chronic conditions. Using data on a representative sample of 753 persons with ID aged 40+ randomly selected from Irelands National Intellectual Disability Database (NIDD), the relationship between health status and health care utilization was specically considered. Results: The general practitioner was the most accessed health care professional and those living in residential settings reported the most receipt of health services. Screenings and health resource use appeared particularly low for those with severe to profound ID. Dental service usage appeared to decline with age. There was little evidence of access to geriatricians among older respondents and easy-to-read materials on health care/health services were not reported to be widely available. Conclusions: Overall people with an ID access health care regularly. Given that Irelands austerity measures will challenge efforts to build ageing well resources, further follow-up through IDS-TILDA will offer an opportunity to monitor over time the impact of changing health policy for people with ID. Safety of patients with intellectual disabilities in UK hospitals I.Tuffrey-Wijne (ituffrey@sgul.ac.uk)*, N. Giatras, E. Abraham & L. Goulding *St Georges University of London, England Aim: There have been a number of high prole cases where safety of patients with intellectual disabilities (ID) was compromised in UK National Health Service (NHS) hospitals, including avoidable death. An independent inquiry (2008) made recommendations to improve practice. This study was commissioned by the UK Department of Health. What are the crossorganisational, organisational and individual factors in NHS hospitals that promote or compromise a safe environment for patients who have learning disabilities? What helps/hinders implementation of the recommendations? Method: Six NHS hospitals are taking part, representing a mix of sizes, urban/rural, and presence/absence of an ID liaison nurse. There are three research phases with data collection at each of the hospital sites: (1) mapping of current policies and procedures related to ID; (2) investigating current practice, experiences and attitudes at each site; and (3) generalisation to other vulnerable patient groups. Phase (2) involves: interviews with senior managers, ward staff, patients with ID and carers; questionnaires to ward staff and carers; participant observation and tracking of tracer patients; and monitoring of untoward incidents and complaints involving patients with ID. Results: The study period is July 2011-March 2013. We will present preliminary ndings of stages (1) and (2). Symposium: Other health services
Physical Health
Physiotherapy for people with intellectual disabilities and spasticity: A descriptive study E. Gielen (egielen@asvz.nl)* *Revalidation Department, ASVZ, The Netherlands Aim: Much research has been conducted into the effects of physiotherapy for children with cerebral palsy. Unfortunately there is still no evidencebased practice when it comes to the specic problems in this population because of insufcient consensus in the conclusions of different researchers. This becomes more complicated in people with congenital or acquired brain injuries with intellectual disabilities who are aging, when spasticity becomes more pronounced. The purpose of this descriptive study is to gain more insight into the physical therapy intervention in people with intellectual disability and spasticity in the Netherlands. Method: A survey was conducted among physiotherapists employed in nine facilities for people with intellectual disabilities. These institutions ranged from a childrens day-treatment centre with 37 children to a large rural residential setting with 1150 clients. This study involved facilities with a total of 3881 clients. Results and Conclusions: Survey results will report on the number of physiotherapists dedicated to serving this population, reasons for referral, number of clients served, specic treatment modalities, information about who is diagnosing spasticity and what criteria is being used, treatment goals, and outcome measures. Health and well-being for adults with intellectual disabilities: A focus on osteoporosis prevention N. Baum (nehama@mukibaum.com)* & M. Edwards *MukiBaum Accessibility Foundation, Canada Aim: Research suggests that individuals with intellectual disabilities tend to experience health problems more frequently, more severely and at an earlier age than the rest of the population. Many of these problems, such as osteoporosis, are preventable with lifestyle adjustments. This study describes the initial stages of a Health and Well-Being program at a community based centre for individuals with intellectual disabilities which attempts to mitigate these health concerns. Methods: 30 individuals with intellectual disabilities over the age of 35 served at a community based treatment centre participated in the study. Bone density scans were carried out for each individual to determine risk of bone density loss. These results were connected with physical activity rates. Results: Most individuals were found to have reduced bone density. Although some individuals participated in physical activity, this was not standardized across the centre at the time of the bone density scans. Discussion: A physical activity program was created in order to prevent further deterioration and contribute to overall health. A staff education session regarding osteoporosis prevention was implemented. Future directions include re-testing bone density after a full year of intervention as well as the further incorporation of quality of life concerns. Access to cancer screening in people with learning disabilities in the UK using a primary care database A. Hassiotis (a.hassiotis@ucl.ac.uk)*, D. Osborn, L. Horsfall, I. Petersen, K. Walters & I. Nazareth *Mental Health Sciences Unit, University College London, England Aim: To assess whether people with learning disabilities in the UK have differential access to screening for cervical, breast, prostate, and bowel cancer compared to people without learning disabilities and related issues. Method: Four cohort studies compared people with and without learning disabilities within the recommended age ranges for cancer screening in the UK, using Poisson regression to determine the relative incidence rates, adjusting for age, time period, social deprivation and gender when applicable. Results: Relative rates of screening for all four cancers were signicantly lower for people with learning disabilities. The adjusted incidence rate ratios (IRRs) were as follows: Cervical smears: Number eligible with LD = 6254; IRR = 0.54 (0.52 to 0.56). Mammograms: Number eligible with LD = 2956; IRR = 0.76 (0.72 to 0.81); PSA Number eligible = 3520 IRR = 0.87 (0.80 to 0.96) and Faecal Occult Blood Number eligible = 6566; 0.86 (0.78 to 0.94). Differences in screening rates were less pronounced in more socially-deprived geographical areas. Conclusions: Despite national published guidance on improving access, people with learning disabilities in the UK are signicantly less likely to receive screening tests for cancer that those without learning disabilities. Other methods for reducing inequalities in access to cancer screening should be considered.

Posters: Food security and people with intellectual disabilities living in community residences in Sweden P. Adolfsson (Paivi.Adolfsson@cff.uu.se)* *Uppsala University, Sweden Aim: According to the United Nations, food security exists when all people, at all times, have physical, social and economic access to sufcient, safe and nutritious food which meets their dietary needs and food preferences for an active and healthy life. Measurements of food intake and anthropometric measurements, such as body mass index (BMI), can be used to establish food security for people on individual level. The aim of this study was to examine if food security exists for people with intellectual disabilities (ID) who get support with their everyday life and live in community residences in Sweden. Method: For the 32 study participants on an individual level, 3-day assisted weighed food records and calculations of BMI were used. Results: Food records showed that a majority (N = 24) of study participants had insufcient intake of one or several essential micronutrients and/or dietary ber. One fourth were normal-weight, the remaining participants were underweight (N = 4), overweight (N = 7) or obese (N = 9). Only 4 participants were of normal weight and had sufcient intake of all essential micronutrients. Conclusions: Results indicate that food security was not met for the majority of the study participants and those with normal-weight should be regarded as nutritionally vulnerable. A meta-analysis of physical health among parents of children with disabilities M. Burke (meghan.m.burke@vanderbilt.edu)*, N. Miodrag, E.Tanner-Smith, & R. Hodapp *Vanderbilt Kennedy Center, Tennessee, US Aim: We conducted a meta-analysis to compare physical health problems among parents of children with disabilities versus parents of children without disabilities. Method: Eligible studies reported results from the 5-item Health domain of the Parenting Stress Index. We conducted a systematic literature search to identify all studies. Group comparison effect sizes were synthesized in a meta-analysis. We also examined the moderating effect of study characteristics. Results: The literature search yielded 17 studies. Compared to parents of children without disabilities, parents of children with disabilities reported higher levels of health problems, with a weighted mean effect size of 0.36 (95% = 0.20 0.51; 2 = .06; I2 = 59.8%). Child and parent demographics did not explain the heterogeneity in the effect sizes. Results indicated larger differences in health problems among studies of higher quality, whereas more recent studies showed somewhat smaller differences. Conclusions: Parents of children with disabilities also report increased health problems. Although more studies are needed, practitioners should be alerted to the need to prevent and treat the physical health problems of parents of children with disabilities. Training support staff to modify uids for adults with intellectual disabilities and dysphagia D. Chadwick (d.chadwick@wlv.ac.uk)*, J. Stubbs, G. Stacey, S. Forvague, D. Anderson & S.Tye *School of Applied Sciences, University of Wolverhampton, England Aim: People with intellectual disabilities (ID) and dysphagia often depend on others for safe preparation and modication of meals and drinks to avoid discomfort during mealtimes. Prior research indicates that carers often nd modication difcult and stressful. This study investigates the efcacy of training carers to modify uids accurately. Method: A 3 3 pre-post experimental design was employed to compare the observed accuracy of modication across three groups and at three time points (pre-, post- and at 10 months). Sixty-two carers supporting people with intellectual disabilities were randomly allocated to one of three groups: (1) a control group given written guidance only, (2) a group who received typical training and written guidance, and (3) a group who received typical training, written guidance and used Thickness Indicator Model (TIM) tubes. Results: Typical training resulted in signicantly greater carer accuracy in modifying uid consistencies than written guidance. Use of the TIM tubes also improved accuracy in the modication of drinks. Conclusions: Modication aids appear promising in acting as an aid to support staff but further research is warranted to ascertain the effectiveness of the training and the TIM tubes in improving accuracy over a longer time scale and in individuals usual living environments. Posters:
Physical Health
Obesity trends of young Special Olympians in the United States J.T. Foley (john.foley@cortland.edu)*, M. Lloyd & V. A.Temple *State University of New York College at Cortland, New York, US Aim: According to WHO data the United States (US) has one of the highest obesity rates among youth in the world. It is generally accepted that individuals with intellectual disabilities have higher rates of obesity than their peers. However, with the obesity rates continuously escalating in the US among the general population over the past 20 years, there is limited evidence that this disparity still exists. Therefore the purpose of this study was to compare the BMI of youth with and without intellectual disabilities in the US. Method: Data from 3,619 Special Olympics (SO) participants between the ages of 8<19, who competed in the years 20052010 were extracted from the SO International Health Promotion database. Based on BMI, participants were classied as non-overweight/obese, overweight, and obese. Participants were split into two age bands: 811, and 12<19. Comparisons were made between SO data and previously published NHANES data from the years 20052006 & 20072008. Results: Results show that in 20052006, male and female SO participants in both age bands had considerably higher obesity prevalence rates than their same-age peers. Conclusions: These results help highlight the disparity that exists in the US and the need for further interventions particularly at an early age. Feasibility of eight physical tness tests in 1050 older adults with ID: Results of the HA-ID study T. Hilgenkamp (t.hilgenkamp@erasmusmc.nl)*, R. van Wijck & H. Evenhuis *Intellectual Disability Medicine, Department of General Practice, Erasmus Medical Center, Rotterdam, The Netherlands Aim: Physical tness is relevant for well-being and health, but knowledge on feasibility of instruments to measure physical tness for older adults with intellectual disabilities (ID), is lacking. Method: As part of the study Healthy Ageing with ID, involving 1050 older clients with ID in three Dutch ID services, physical tness was measured with eight tests: boxand-block-test, response-time-test, Berg-balance-scale, walking speed, grip strength, 30s-Chair-stand, 10 m incremental-shuttle-walking test and the extended modied back-saver-sit-and-reach-test. Feasibility was expressed in completion rates for the total HA-ID population and for subgroups. Results: All tests had moderate to good feasibility in all subgroups of older adults with ID, except for participants with profound ID, who could only participate moderately in the comfortable walking speed and the incremental-shuttle-walking-test. Participants with severe ID only had low completion rates with the response-time-tests and the Berg-balance-scale. Wheelchair users had low feasibility on all tests which involved the legs. Oldest age groups, participants with Down syndrome and participants with low physical activity levels all had moderate to good feasibility for all tests. Conclusions: Physical tness in older adults with ID can be objectively measured by the eight physical tness tests used. Development & testing of nutrition intervention for community-based group homes K. Humphries (khumphries@goodnutritionideas.com)*, M. A.Traci, B. Rigles & T. Seekins *The University of Montana, US Aim: To develop an effective, acceptable nutrition intervention at the household level for community-based residences for adults with intellectual or developmental disabilities (IDD) that would improve the food systems, require little staff training, and improve diet-related secondary conditions for individuals with IDD. Method: We used community-based participatory research methods for a needs assessment, intervention and materials development, pilot testing, and effectiveness testing of the MENU-AIDDs (Materials supporting Education and Nutrition for Adults with Intellectual or Developmental Disabilities) program. Currently an efcacy study is underway, with results expected in 2013. Results: Testing described above resulted in signicant positive changes in foods planned and served and eaten, improvements in body weight (both weight gain and weight loss according to individuals need), and reduced gastrointestinal dysfunction. The MENU-AIDDs program was found to be acceptable to residents, direct care staff, and administrators. It increased resident choice and better addressed their special dietary needs. Conclusions: Using an ecological approach to dietary intervention, nutrition and nutrition-related secondary conditions improved in an acceptable, inexpensive, sustainable program. The program is in use in several US states, currently serving approximately 800 adult residents.

Posters: Patterns of prescription drug use in adults with intellectual disabilities E. Lauer (lauer.emily@gmail.com)* & A. Bonardi *Center for Developmental Disabilities Evaluation and Research, Shriver Center, University of Massachusetts Medical School, US Aim: To characterize use of prescription medications in adults with intellectual disability using Medicaid state insurance claims. Method: Seven months of Medicaid pharmaceutical reimbursements were linked to Massachusetts Department of Developmental Services administrative records to identify adults with intellectual disabilities. Patterns of drug utilization were analyzed by insurance eligibility, demographic, functional and clinical factors of recipients, and by health care provider. Comparisons were made to past utilization data for this population and to other Medicaid recipients. Results: Compared to other Medicaid recipients, adults with intellectual disabilities are more likely to use prescription medications, have a higher average number of prescriptions per beneciary, and more likely to be on 2 or more medications within the same class. Conclusions: Medicaid insurance claims are a viable method for examining utilization patterns in this population, despite a shift in primary prescription medication coverage to the federally administered Medicare program for those dually eligible for Medicaid and Medicare. Adults with intellectual disabilities have different utilization patterns than other Medicaid beneciary populations. Patterns suggest that education and support to health care providers on addressing the medical and behavioral needs of this population may help reduce the relatively high polypharmacy rates seen in this population. Posters:
Physical Health
Institutional caregiver attitudes to gynecological health of women with intellectual disability L.-P. Lin (sasalin@ndmctsgh.edu.tw)* & Jin-Ding Lin *School of Public Health, National Defense Medical Center, Taipei, Taiwan Aim: There is little information available related to the reproductive health of people with intellectual disability (ID). The present study aims to describe the caregiver attitudes and to examine determinants of gynecological health for women with ID. Method: We recruited 1,152 caregivers (response rate = 71.87%) and analyzed their responses to a mailed-out, self-administered, structured questionnaire. We divided attitudinal perceptions of reproductive health into four domains: menstrual, menopause, sex education, and preventive healthcare. Each domain in turn had ve issues (questions), with scores of 1 to 4 given according to the level of agreement with each issue (low to high score: strongly disagree, disagree, agree, and strongly agree). The total sum score of each domain was 520 (total score range: 2080). Results: The respondents attitudinal mean score was 57.78 4.64 (range: 4875). The multiple logistic regression model revealed that the factors of in-job training for reproductive health (OR = 1.793, 95%CI = 1.312.46), felt satised with public reproductive health services for the client (OR = 0.694, 95%CI = 0.530.92), and scores of reproductive health knowledge (OR = 1.735, 95%CI = 1.292.34) were signicantly correlated with attitudinal score level toward gynecological health for women with ID. Conclusions: The study highlights that service authorities should address health policy initiatives to continue providing injob training of reproductive health, public reproductive health services, and increase caregivers reproductive health knowledge for the caregiver. Disability care body of knowledge H.Timmerman (htimmerman@vgn.nl)* *VGN, Utrecht, The Netherlands Aim: The Competence Box 2.0 describes the competences needed by caregivers who work in disability care. Research showed the lack of knowledge in education. The question remained what specic knowledge was needed; therefore this knowledge has been described and made accessible to caregivers. Method: Experts were invited to ve seminars. The subjects of these seminars were: health, well-being, independence, social participation and organisation and profession. During these seminars more than a thousand knowledge items were collected. These were assembled into a model concerning the support cycle.The competence proles and the educational frameworks belonging to them were taken as a starting point to formulate the knowledge questions that caregivers come across in their work. To aid caregivers in nding the answers, the knowledge questions have been linked to the knowledge items in the framework.The framework will be lled with knowledge sources such as manuals, methods, literature and websites. Results: In spring 2012 it will be available for future care providers and for care providers who already work in disability care. Conclusions: Competent professionals are essential in offering good quality of care. The projects of the Consortium Stronger on Your Own Feet J. Naaldenberg, F. Kinkelaar & H. van Schrojenstein Lantman- de Valk (h.lantman@elg.umcn.nl)* *Dept of Primary and Community Health Care, Radboud University Nijmegen Medical Centre, Nijmegen, The Netherlands Aim: Evidence-based practices contribute to better health and health care for people with intellectual disabilities (ID).This positively inuences the quality of life of people with ID and increases job satisfaction for professionals in the eld. For three service providers around Nijmegen Siza, Dichterbij and Pluryn this was the reason to form a cooperation with Radboud University Nijmegen Medical Centre and to establish the Consortium Stronger on Your Own Feet. Method: Repeated consultations with professionals, service-users, and researchers resulted in a priority list of research topics. In 2007, four projects were started. In 2011 some new projects followed. Results: The poster will give an overview of the current situation of nearly-nished and recently-started projects, as well as main results. Conclusions: Positive outcomes and challenges for the future will be discussed.
Developmental screening practices in Canada: A survey of primary care providers M. Limbos (info@limboschildpsychology.com)*, D. Joyce & T. Nguyen *Department of Psychology, Renal and MultiOrgan Transplant Programs, British Columbia Childrens Hospital, Canada Aim: Guidelines recommend regular screening for developmental delays (DD) using standardized tests. In Canada, the majority of primary care is provided by family physicians. Little is known about current practices, knowledge, and barriers to screening. Method: A survey of 500 primary care providers examined familiarity with and use of: Nipissing District Developmental Screen (NDDS), Ages and Stages Questionnaire (ASQ), Parents Evaluation of Developmental Status (PEDS), Modied Checklist for Autism in Toddlers (MCHAT), and Rourke Baby Record (Rourke). Results: Levels of familiarity from 154 clinicians responses: Rourke (91.6%), NDDS (50%), ASQ (3.9%), PEDS (10.4%) and MCHAT (10.4%). Similar proportions used these tests routinely in practice for developmental screening. The majority believed interventions for DD were effective, half felt condent in how to care for DD, 39% indicated insufcient community resources, 19.5% felt condent they could identify DD without screening tools, 29.2% felt parental concerns were a good substitute for screening. Barriers identied: time (77.3%), familiarity with tests (68.8%), resources (60.4%), and reimbursement (58.4%). Conclusions: Negative attitudes and beliefs as well as barriers can be attributed to lack of screening. Further dissemination of guidelines and recommendations for use of screening tests is needed to increase the accuracy of screening for DD.

Symposium: Staff training Comparison of medical, nursing and other allied healthcare students on training and experience in developmental disabilities B. Isaacs (patricia.minnes@queensu.ca)*, P. Minnes, J. Burbidge, A. Loh & J.Versnel *Surrey Place Centre, Toronto, Ontario, Canada Aim: To compare medical, nursing, and allied healthcare (OT, PT) students (reported) training in developmental disabilities (DD). Method: HELPS Inc. is a Canadian research team focusing on health, education, and parent factors promoting social inclusion of children with DD. In this study, 801 healthcare students (medicine n = 268, nursing n = 222, OT n = 179 and PT n = 135) completed a survey regarding knowledge and training in DD, adapted from the McGill Inclusive Education Questionnaire (Daniel & Cornish, 2006). Results: Chi-square analyses compared students training in assessment, treatment, and social inclusion of children across 4 diagnostic categories: autism spectrum disorders, Down syndrome, fragile X syndrome, and non-specic intellectual disability. Overall 44% of students reported training in assessment (medical students reported signicantly more than other groups). Forty-two percent of students reported training in treatment of children with DD, with nursing students reporting the least. Thirty-four percent of students reported training in social inclusion, with OT and PT students signicantly more likely to have such training than medical or nursng students. Forty-six percent of students reported training about at least one diagnostic group. Conclusions: Results will be discussed in terms of education needs and implications for practice across disciplines. Predictors of healthcare students perceived competence working with individuals with developmental disabilities P . Minnes (patricia.minnes@queensu.ca)*, B. Isaacs, J. Burbidge, A. Loh & J.Versnel *Queens University, Kingston, Ontario, Canada Aim: To explore predictors of medical, nursing, and rehabilitation therapy students perceived competence working with individuals with developmental disabilities. Method: HELPS Inc. is a Canadian research team focusing on health, education and parent factors promoting the social inclusion of young children with developmental delays and disabilities. For this study, 801 healthcare students (medicine n = 268, nursing n = 222, occupational therapy n = 179 and physical therapy n = 135) completed an online or paper survey. Survey questions regarding perceived knowledge, training, and experience in DD were adapted from the McGill Inclusive Education Questionnaire (Daniel & Cornish, 2006). Results: Logistic regression analyses were conducted for each discipline including four independent variables: (1) training in DD; (2) perceived knowledge of assessment; (3) perceived knowledge of treatment; and (4) total experience working with individuals with DD. Regression analyses yielded different results with training, knowledge of treatment and experience emerging as signicant predictors of medical students perceived competence. Knowledge of treatment emerged as the only signicant predictor of physical therapy students competence, whereas experience in DD emerged as the only signicant predictor of nursing and occupational therapy students perceived competence. Conclusions: Results will be discussed in relation to education needs across disciplines and implications for practice. End-of-life care and people with intellectual disabilities: A multi-media educational resource D. McLaughlin (d.mclaughlin1@ulster.ac.uk)*, O. Barr, S. McIlfatrick & R. McConkey *Institute of Nursing Research, University of Ulster, Northern Ireland Aim: This study aimed to develop and evaluate a multi-media educational resource in palliative and end-of-life care for specialist palliative care and intellectual disability (ID) services which promoted collaborative working. Method: A mixed-methods design involving three phases was used. Qualitative data were obtained from semi-structured interviews with a purposive sample of professionals (n = 30) and family carers (n = 5) and from two focus groups with people with ID (n = 17). Data were content analysed as outlined by Newell and Burnard (2006). This identied training needs and issues in end-of-life care for this population which were conrmed through quantitative data from services in a regional scoping study analysed using descriptive statistics. A DVD and manual were developed and evaluated with twelve professionals. Data were collected using a solicited diary, the Readiness for Inter-professional Learning Scale, Likert scales and an evaluation questionnaire. Thematic analysis and descriptive statistics appropriate to data were used. Results: Findings suggest that this resource demonstrates the need for and benets of partnership working and transferability of this learning to practice could address issues at end-of-life for people with ID. Conclusions: Findings of this study have importance for partnership working and service provision in end-of-life care for this population.
Populations, Community, and Service Systems
Symposium: Promoting self-determination in community living and health through interactive smart technologies Creating iPad-based applications for direct response survey options by people with I/DD A. Bacon (abacon@wihd.org)*, A. Schwartz, D. OHara, D. Davies & S. Stock *Westchester Institute for Human Development, New York, US Aim: To develop and eld test an iPad-based national survey on consumer choice and decision-making that allows for direct responses by consumers instead of current proxy response generation strategies. Method: The consumer choice set of questions from the National Core Indicators survey on the quality of community services for people with I/DD was adapted for use on an iPad using a specialized software application, ATLAS developed by AbleLink Technologies, that supports obtaining direct responses from individuals with varying cognitive and communication skills. The modied NCI survey was eld tested at an annual meeting in 2010 of self-advocates from across the U.S. and in the fall of 2011 at the New York State annual self-advocates meeting. Results: Over the course of the three-day national meeting over 250 self-advocates completed the survey independently with only 12 requiring support from the test administrator. One self-advocate proclaimed on completing the survey I did not realize how many choices I had for my life. Conclusions: iPad and other smart touch screen technologies offer very accessible platforms for software applications that promote and encourage choice and decision-making among people with I/DD.
Designing cloud-based interactive patient satisfaction, symptom and care management surveys for people with I/DD D. OHara (dohara@wihd.org)*, D. Davies & S. Stock *Westchester Institute for Human Development, New York, US Aim: To demonstrate how new smart technologies such as the iPad and accessible software applications can provide greater choice and decisionmaking in health care experiences for people with I/DD. Method: As part of the implementation of e-health and telemedicine strategies for people with I/DD, accessible health promotion, wellness, and health monitoring software applications designed for iPad and other smart technologies are being evaluated in terms of their usability by people with I/DD. Results: Initial pilot work seeking patient satisfaction/experience reports on a recent health care visit using iPad accessible survey questionnaires with 10 individuals with I/DD resulted in 9 of the 10 individuals being able to complete the survey independently after initial instruction in the use of the electronic survey on 8 demographic questions. Other health information resources and health promotion and education tools are now under development based on this initial success in the design of accessible applications for easy to use smart technologies. Conclusions: Smart touch screen technologies and accessible software applications have the potential to directly support choice and decision-making about their health care experiences for people with I/DD.

Symposium: Promoting self-determination in community living and health through interactive smart technologies (continued) Promoting self-determination through innovative iPhone/iPad applications Y. Lachapelle (yveslachappelle@uqtr.ca)*, M.Therrien-Blec, D. Lussier-Desrochers, M. Caouette & M. Guilmette *Universit du Qubec TroisRivires, Qubec, Canada Aim: Since 2008, the Self-Determination Support Technologies (SDST) Research Chair conducted projects to assess the utility of assistive technologies regarding self-determination of people with an intellectual disability. One area of research focuses on mobile technologies such as Smartphones, iPhone PC Tablets, iPad, and handhelds. Method: We conducted a 2-year project using smartphones equipped with AbleLink Pocket Compass software to help individuals with intellectual disabilities (ID) to complete tasks within home and work settings. Results: Positive results indicated the technology was very useful in assisting 15 participants with ID to complete targeted tasks at home and at work. It made it easier for them to remember required steps. However, this technology was only available in English and required users to use a computer to build tasks before uploading items to the Smartphone. Based on the research results and recommendations from users and their relatives, we completed a list of modications. Unable to accomplish this we decided that it would be great to establish a partnership with a local company to achieve this. Through several meetings, brainstorming sessions, and collaborative work we were able to create an iPhone/ iPad application. Conclusions: This paper will highlight the study main results and present the application. BlueCall Phone and BlueAssist: Inclusive paths for all M.Verdonschot (m.verdonschot@vilans.nl)* *Vilans, Utrecht, The Netherlands Aim: People with an intellectual disability often encounter invisible barriers and experience inaccessibility of information and communication. To overcome these barriers Ithaka in Belgium developed BlueCall Phone (an application for smartphones) and BlueAssist (a symbol that builds bridges between people) by making use of existing new technology. This study evaluates the added value of BlueCall Phone with BlueAssist on social inclusion and the process of coaching a person using this technology. Method: Four participants who were clients of a service provider in the Netherlands were coached in using BlueCall Phone in community activities during three months. At the beginning and at the end of the coaching process a questionnaire was completed by participants and coaches. All activities and experiences were described in a log and analysed. Results: Results indicate that BlueCall Phone (with BlueAssist) turned out to be very useful in assisting participants to complete target tasks at work, to do groceries and to travel with public transport. Furthermore the availability of coaching time and involvement of family from the beginning seemed to be factors of inuence on the coaching process and results. Conclusions: BlueCall Phone has the potential to improve the self-determination and social inclusion of people with ID.
Symposium: Occupational stress in intellectual disability services Occupational stress in intellectual disability services Y. Lunsky (yona_lunsky@camh.net)*, R. Hickey, J. Rose, J. Hensel & Y. Lunsky *Centre for Addiction and Mental Health, University of Toronto, Toronto, Ontario, Canada Aim: This symposium focuses on predictors of job stress and burnout in direct care staff working in intellectual disability services from Canada and the UK. Different models to account for burnout are proposed, with a focus on client level, and organizational level variables. Method: Each study measured burnout using the Maslach Burnout Inventory. Results and Conclusions: The presenters will propose different ways to reduce or prevent burnout that include focusing on positive and negative aspects of relationships between staff and those that they care for, as well as organizational structures and human resource practices. Similarities and differences between organizational practices in the different countries will also be considered.
Pro-social motivation, stress and burnout among direct support workers R. Hickey (hickeyr@queensu.ca)* *Queens University, Kingston, Ontario, Canada Aim: This study explores whether the desire to engage in work that is benecial to others moderates the effects of burnout. Method: Based on a survey of 1,570 direct support professionals in Ontario, this study used multiple regression analyses, controlling for the interaction effects of pro-social motivation on occupational stress and burnout. Results: Pro-social motivation did not buffer against emotional exhaustion. In contrast, high levels of pro-social motivation were associated with higher levels of reported emotional exhaustion. Pro-social motivation did signicantly moderate the translation of emotional exhaustion and role boundary stress into depersonalization. Pro-social motivation also moderated the effects of role ambiguity stress on a direct support workers sense of personal accomplishment. Conclusions: Direct support workers experience relationships with the people they support in ways that are distinct from their relationship with the organization and other extrinsic work experiences. The results concerning emotional exhaustion can be interpreted as representing the stress generated by the gap between service idealism and service capacity. To fully address burnout, stress, and satisfaction in the workplace, organizations require multi-dimensional human resource practices to support pro-social motivation, enhance positive affect, and address labour market concerns.

Symposium: Occupational stress in intellectual disability services (continued) Client characteristics, organisational variables, staff cognitions and burnout in care staff J. Rose (j.l.rose@bham.ac.uk)*, S. Mills, D. Silva & L.Thompson *The University of Birmingham, Edgbaston, Birmingham, England Aim: The importance of staff in the care of people with intellectual disabilities is gaining increasing recognition. A broad range of factors have been identied as having an impact on staff burnout and performance. To improve our understanding of how these factors interact, a model of carer stress is adapted and tested. Method: A cross sectional survey design was used to survey staff in residential units for people with intellectual disability. Assessments included burnout, organisational factors, staff cognitions, and ratings of resident challenging behaviour. Results: The relationship between challenging behaviour and emotional exhaustion was fully mediated by fear of assault. The relationship between emotional exhaustion and experienced safety (an organisational variable) was also fully mediated by fear of assault. Conclusions: The use of the model with staff is supported and it suggests that staff burnout can be reduced by inuencing either staff cognitions, organisational factors or challenging behaviour or a combination of these factors. Factors associated with staff-perceived severity of client aggression J. Hensel (jennifer.hensel@utoronto.ca)*, Y. Lunsky & C. Dewa *Centre for Research on Employment and Workplace Health, Toronto Aim: Exposure to aggressive client behaviour has been associated with stress and burnout among staff in intellectual disability (ID) services. In the trauma literature, trauma type, cumulative exposure, and perceived threat have been related to psychological outcomes. Our aim was to examine factors that are associated with self-perceived severity of aggression experienced by residential group home staff. Method: Cross-sectional survey data for a sub-sample of staff who experienced client aggression (n = 386) was used in these analyses. A hierarchical cluster analysis was used to group the sample by type, frequency and perceived severity of aggression exposure. Clusters were compared in terms of demographics and exposure variables. Logistic regression analysis was used to examine the contribution of exposure subtype and frequency on perceived aggression severity. Results: Clusters (n = 5) differed signicantly by aggression subtype scores, frequency and severity ratings. Regression results indicate highest perceived severity was associated with daily aggression (OR = 3.9, p = 0.03), aggression towards others causing injury (OR = 5.3, p = 0.05), and property aggression causing damage (OR = 5.4, p = 0.004). Conclusions: The perceived severity of aggression seems to be associated with the frequency and type of aggression experienced. This information may have useful implications for targeting stress and burnout interventions for staff.
Symposium: Screening for childhood neurodisability in low income countries I Risk of child disability and associated participation restrictions in low- and middle-income countries M. Durkin (mdurkin@wisc.edu)* & M. Maenner *Departments of Population Health Sciences and Pediatrics, and Waisman Center, University of WisconsinMadison,Wisconsin, US Aim: Previous studies in low- and middle-income countries have measured the prevalence and correlates of child disability. Few have investigated dimensions of participation and discrimination. This study evaluated indicators of childhood participation and their association with risk for disability in selected low- and middle-income countries. Method: Crosssectional data from UNICEFs Multi-Cluster Indicator Surveys from 15 countries that administered the Ten Questions (TQ) screen for disability and collected indicators of participation and the home environment were obtained for 35,745 children aged two to nine years. The frequency of participation indicators was compared between children screening positive versus negative on the TQ. Results: In ve countries, children aged two to four years who screened positive for disability were signicantly more likely to be left unsupervised and/or less likely to engage in early learning activities with adults compared to children screening negative on the TQ. In seven countries with data on discipline, children aged two to nine years who screened positive on the TQ were signicantly more likely to receive severe physical discipline than were those screening negative on the TQ. Conclusions: Participation restrictions and discrimination are important dimensions of disability that warrant greater emphasis in epidemiologic studies and global disability monitoring programs. Screening for childhood neurodisability in a cohort of preschool children in KwaZulu-Natal, South Africa L. Davidson (lld1@columbia.edu)*, S. Kauchali, M. Chhagan, J. Kvalsvig, M. Craib, F. Bah, S. M. Arpadi, M.Taylor, C. A. Mellins & Z. A. Stein *Department of Epidemiology, Mailman School of Public Health, Columbia University, New York, US Aim: To investigate the association between family demographics and children screening positive for neurodisablity on the Ten Questions (TQ). Method: Door-to-door screening by community workers using the TQ and a demographic survey in a population-based sample in KwaZuluNatal, South Africa. Results: Of the 1787 preschool children enrolled, 810 (46%) screened positive on the TQ (questions with the highest positive scores included hearing (15%) and speech (14%)). Compared to families with paternal secondary education, those with only paternal primary or no education were more likely to have their child screen positive on the TQ (OR 1.56, 95% CI 1.022.39 and OR 1.59, 95% CI 1.112.29). Families that were part of the poorest third compared to those in the top third, were more likely to have their child screen positive on the TQ (OR 1.30, 95% CI: 1.021.66). TQ answers will be compared to those in the doctors medical history for the 1581 children later assessed. Conclusions: Children in an HIV-prevalent area of South Africa, characterized by poverty, scored at a level comparable to the highest country score in the UNICEF MISC3 report on child disability, and replicates that reports association of TQ with family wealth. Epilepsy and associated neurodevelopmental delays in a cohort of preschool children in KwaZulu-Natal, South Africa L. Davidson (lld1@columbia.edu)*, S. Kauchali,V. Nankabirwa, M. Craib, S. M. Arpadi & M. Chhagan *Columbia University, New York Aim: To determine the prevalence, risk factors and neurodevelopmental delays associated with epilepsy among preschool children in peri-urban KwaZulu-Natal, South Africa. Method: A cross-sectional populationbased study of neurodevelopmental disability in children, aged 46 years, included ve questions on seizures. Epilepsy was dened as two or more unprovoked seizures. Results: Prevalence of lifetime epilepsy in 1582 children was 27/1000 (95% CI: 19, 36), active epilepsy was 15/1000 (95% CI: 9, 22). The prevalence of unprovoked seizures was 42/1000 (95% CI: 33, 53). Risk factors for lifetime epilepsy included a history of brain infection (OR: 6.8, 95% CI: 1.4, 32.9) and having been taken away from the mother immediately after birth (OR: 2.3, 95% CI: 1.0, 5.3). Impairments associated with epilepsy included: ne motor (OR: 2.9, 95% CI: 1.3, 5.0), speech, (OR: 3.3, 95% CI: 1.4, 7.6), cognitive (OR: 6.1, 95% CI: 2.8, 13.7) and gross motor (OR: 5.8, 95% CI: 2.4, 14.3). Children with epilepsy were more likely to have behaviour problems compared to children without epilepsy (OR: 4.4, 95% CI: 1.2, 16.2). Conclusions: Estimates of epilepsy prevalence in pre-school children were consistent with estimates from low- and middleincome countries. Epilepsy was strongly associated with developmental delays and behavioural problems.

Symposium: Screening for childhood neurodisability in low income countries II Ten Questions (TQ) adaptation to screen a wider range of developmental functions and ages: Asian experience N. Khan (naila.z.khan@gmail.com)* *Bangladesh Institute of Child Health, Dhaka Shishu (Childrens) Hospital, Dhaka, Bangladesh Aim: To discuss limitations of the TQ, developed in the late 1980s, and adaptations which have addressed emerging concerns in children with impairments and disabilities. Method: Three countries have adapted the TQ recently within Asia. In Nepal, an eleventh question on behavioural concerns (Goodman et al, 1999) was added for a follow up of high-risk newborns at school entry. In Vietnam, older groups of children were also included. In Bhutan, a second stage of assessment was conducted by primary school teachers. In Bangladesh, as well as including the eleventh behaviour-related question for 29 years olds, a new set of questionnaires for 0<2 year olds (Developmental Screening Questionnaire) was developed. Results: This presentation will highlight the consistency and comparability of all study results within and between countries, and signicant links with known risk factors such as poverty, maternal /parental education and malnutrition. Its strength in identifying covert or silent problems (eg., in cognition, speech, and behaviour) will also be presented. Conclusions: The TQ, and its various adaptations, remains the most useful tool for screening of children at all ages with a range of neurodevelopmental impairments and disabilities. Neuro-developmental disorders among children in India: An INCLEN study D. Silberberg (silberbe@mail.med.upenn.edu)*, M. Nair, S. Gulati, N. Arora & J. Pinto-Martin *Department of Neurology, University of Pennsylvania Medical Center, Philadelphia, Pennsylvania, US Aim: This paper will report on a study of the International Clinical Epidemiology Network (INCLEN). The purpose of the study is to determine the prevalence of neurodevelopmental disorders among children 29 years of age in 45,000 households, in 6 regions of India. Specic disorders include autism, cognitive impairment, disorders of learning, attention decit, speech and language, vision impairment, hearing impairment, cerebral palsy, neuro-muscular disorders, and epilepsy. Method: A screening instrument containing 39 questions was validated in eld tests, criteria for the specic diagnoses were developed, as were manuals for the eld teams. All materials were developed in English, translated to Hindi, then to 8 regional languages, and back-translated to English and Hindi. Results and Conclusions: Data to be presented includes piloting and reliability data, and the prevalence gures.
Symposium: Service access and use Trajectories in health and use of health and social services by children with developmental disabilities S. Shooshtari (shooshta@cc.umanitoba.ca)*, M. Brownell & N. Dik *Departments of Family Social Services and Community Health Sciences, University of Manitoba,Winnipeg, Manitoba, Canada Aim: To examine trajectories in health and use of health and social services by a cohort of children with developmental disability (DD) in Manitoba, and compare their experience with that of a matched comparison group. Method: Twelve years of administrative data (1997 to 2008) from several sources were linked to compare health status, trajectories in health, and use of health care and social services between a cohort of children with DD born between 1987 and 1991 in Manitoba (DD cohort N = 1,887) and their matched comparison group (no-DD cohort N = 5,661). Generalized Estimating Equations (GEE) were used for statistical testing during four 3-year intervals and 12-year interval. Results: Children with DD were signicantly more likely than matched comparison group to: (a) die before age 17, (b) have a diagnosis of depression and diabetes, (c) be hospitalized for injuries, (d) visit physicians, and (e) be placed in out-of-home care. Conclusions: Children with DD have poorer health status compared to children without DD. The health disparities experienced by children with DD persist over time. Further population-based longitudinal research is needed to examine access to health care and social services by children with DD in relation to their health trajectories. Maternal accounts of educational & support services in rural communities for disabilities R. Hussain (rhussain@une.edu.au)*, K.Tait & L.Young *University of New England, Maine, US Aim: Much attention has been given in recent years to developing a multi-professional/multi-agency network of support for families of children with disabilities. However, there is good reason to expect problematic experiences for carers when they choose to live in small rural communities. Method: This paper provides information from a qualitative study on parental experiences in accessing educational and support services for children with disabilities who live in a rural location in Australia. Results: The study conrmed that interaction with educational providers were problematic and sometimes adversarial. Participants felt that their competency as a parent was continually scrutinized. They discussed the personal impact of their choice to live with a child with a disability in a region that has limited support/respite services. Most participants were supporting their family solely on a government carers pension, nding it virtually impossible to obtain paid employment. The lack of services, the challenges of raising a child with disability, and limited nancial support contributed to poor quality of life. Conclusions: The ndings of this study show that with some changes both attitudinal and through support services there is considerable potential for improvement in the lives of carers and children with disabilities in rural communities. Impact of individual funding on therapy service access for people with a disability in rural areas A. Dew (angela.dew@sydney.edu.au)*, C.Veitch, K. Bulkeley, A. Bundy, M. Lincoln, G. Gallego, J. Brentnall & S. Grifths *Faculty of Health Sciences, The University of Sydney, Australia Aim: Australian government policies have resulted in a move away from traditional service provider block funding to individual funding models which should allow people with a disability greater service access exibility and choice. However, people with a disability who live in rural areas have always had less choice and access to therapy services than their metropolitan counterparts. Little is known about how the introduction of individual funding has impacted on people in rural areas. Method: As part of a large four year study into the delivery of therapy services to people with a disability living in rural areas of western New South Wales, 78 carers and 10 adults with a disability were interviewed. Participants spoke about the difculties they experienced in accessing services using recently introduced individual funding packages. Results: This presentation will use examples from participants to suggest strategies for place-based approaches that are tailored to local conditions to address the barriers to successful implementation of individual funding models for people living in rural areas. Conclusions: Internationally, careful planning is required to lessen the disadvantages to therapy service access experienced by people living in rural communities.

Symposium: Academic literature: Peers review and systematic reviews Reviewing manuscripts for peer reviewed academic journals I. Dempsey (ian.dempsey@newcastle.edu.au)* & S. Balandin *University of Newcastle, Australia Aim: The aim of this paper is to assist current and potential peer reviewers of papers submitted to professional journals in the developmental disability area. Subjecting an authors scholarly manuscript to the scrutiny of others who are experts in the same eld, prior to publication in a journal, is widely supported by academics. However, few journals and other sources provide specic advice to reviewers to assist them in their important work. Method: The editors of the Journal of Intellectual & Developmental Disability will overview a variety of strategies that reviewers are encouraged to follow when invited to blind review a paper. Specically, the presentation will address both the gatekeeping and the capacity-building aspects of reviewing. Results and Conclusions: From a gatekeeping perspective, reviewers have a responsibility to reect on the originality, the quality, and the importance of the reported research. Nevertheless, reviewers also have a responsibility to improve the quality of published research by assisting authors to enhance their writing and their researching skills. Is it possible to conduct a Systematic Review on intellectual disability? M. Simpson (m.k.simpson@dundee.ac.uk)* *White Top Research Unit, The University of Dundee, Scotland Aim: For around twenty years, Systematic Review (SR) has been widely held as one of the best tools available for providing the most assured evidential base for clinical intervention in medicine. However, when it comes to ID, assessment is varied, highly contingent, and mutable. Consequently, this paper considers whether it is possible to conduct SRs satisfactorily in the eld of ID at all. Method: MEDLINE was searched for all systematic reviews on ID in the period 20022011 inclusive. In total, 25 papers were identied. Results: Whilst it was possible to achieve consistency and clarity of denition around certain biomedical issues, few, if any, of the studies achieved what might be considered an acceptable level of comparability in the participant groups when it came to issues such as the denition and identication of ID or challenging behaviour. Conclusions: SR depends upon two key assumptions being made about the nature of what is being studied: rst, that concepts, denitions and identication are relatively stable and agreed upon; and, second, that studies being considered exhibit a high degree of methodological homogeneity. Neither of these things is true for ID. The paper concludes that the exacting standards of SR are not realisable for ID. Intellectual Disabilities in southeast Asia L. Cohen (libby.cohen@jcu.edu.sg)* & D. Kehila *Duke-NUS Graduate School of Medicine, Singapore Aim: This presentation provides a progress report on the development of a database and an analysis of research literature related to intellectual and developmental disabilities in southeast Asia. It is anticipated that the information from this project will help guide IASSIDs future activities in the Asia Pacic region. Method: A systematic literature review was conducted in English and, whenever possible, the assistance of speakers of various Asian languages was tapped. A follow-up with individual researchers is in the process of being conducted to determine current research activities, research support needs, needs for mentoring or peer support, and emerging research questions within the region. Snowball sampling has been used to expand the number of respondents, discover respondents who might not be recognized through established methods, and identify resources about which experts are knowledgeable. Results and Conclusions: A summary and analysis of research activities, publications and demonstration projects, as well as evidence-based service initiatives will be presented. Session participants are invited to interact with the presenters and suggest additional resources that can be tapped so that a comprehensive portrait of research on intellectual and developmental disabilities can be described and research support needs can be identied.
Symposium: Autism and FASD Neurobehavioural prole of children with fetal alcohol spectrum disorder in a South African population C. Adnams (colleen.adnams@uct.ac.za)*, H. Daniels, J. Janse van Rensberg, T. Pomario, S. Seedat & P. May *Department of Psychiatry and Mental Health, University of Cape Town, Groote Schuur Hospital, South Africa Aim: South Africa has a high rate of fetal alcohol spectrum disorders (FASD). As part of a larger epidemiology study, this study examined the neurobehavioural prole of school entry-aged children in a high risk rural region. Method: 707 children (FASD = 321; Controls = 386; mean age = 7 years) were administered the Test of Reception of Grammar (TROG), Ravens Coloured Progressive Matrices (RCPM) and the WISC IV Digit Span. Participants class teachers completed the Achenbach System of Empirically Based Assessment (ASEBA) Teacher Report Form to assess DSM-oriented behaviour problems. Results: In all cognitive tests, children with FASD performed signicantly worse than controls (p < 0.001). Compared with control children, the FASD group was rated as having signicantly more overall behaviour problems, including inattention and hyperactivity (p < 0.001). In the FASD group inattention decits were rated as more problematic than hyperactivity and impulsivity, although there was signicant group difference in all ADHD behaviours. Educators observations correlated well with cognitive performance test scores. Conclusions: This short assessment battery discriminates between groups of children with FASD and typically-developing controls and provides a useful tool in combination with other information in epidemiology studies and the diagnosis of FASD. Social Determinants of Health in Canadas North: FASD Prevention A. Felske (awightfelske@mtroyal.ca)*, D. Badry, A. Salmon, A. Harche & M.Van Bibber *Mount Royal University, Calgary AB Aim: This project is based out of the Centre for Northern Families (Yellowknife), a family resource centre that operates an emergency shelter for women who struggle with addictions and trauma related to colonization, ongoing oppression and violence. A social determinants of health lens is used to examine the rates of fetal alcohol spectrum disorder in this population with the goal of reducing incidence of this occurrence. Method: This participatory study used photo-voice to offer women a means of being involved in their own discoveries through images that are meaningful in the context of their lived experiences. Participants from Four Dene and Inuit communities in urban and rural NWT were provided with training and a digital camera to take pictures of things that are meaningful and representative to each of the participants journey towards greater health. Results: Preliminary results of the study will be presented. Subsequent research may use these ndings to design a culturally sensitive initiative on FASD prevention by the women themselves. Conclusions: Documenting their own lived experiences can assist in development of community-based program responses as well as further research into womens wellness and prevention of alcohol affected pregnancies. Towards delineation of the diagnosis: Alcohol related neurodevelopmental disorder (ARND) within the fetal alcohol disorder spectrum C. Adnams (colleen.adnams@uct.ac.za)*, H. Hoyme, W. Kalberg & P. May *Department of Psychiatry and Mental Health, University of Cape Town, Cape Town, South Africa Aim: Fetal alcohol spectrum disorder (FASD) is recognised as the commonest preventable cause of intellectual disability worldwide and a major public health problem. The Institute of Medicine (IOM) provides diagnostic criteria for Fetal Alcohol Syndrome (FAS), Partial Fetal Alcohol Syndrome (PFAS), Alcohol Related Neurodevelopmental Disorder (ARND), and Alcohol Related Birth Defect (ARBD). ARND is likely more common than the more severe FAS and PFAS, yet is less precisely described and consequently more difcult to diagnose. This paper considers the IOM criteria for ARND and examines whether more specic criteria would better delineate this condition. Method: 707 children (mean age = 7 years) from a high risk South African region were included. Of 321 children diagnosed with FASD, 55 were assigned ARND using modied IOM criteria of performance or behaviour rating below the 25th percentile for the study population, of any of: verbal or non-verbal performance, working memory, general behaviour or attention /hyperactivity problems. Scores were compared with 386 similarly aged controls. Results: Although the inclusion criteria required any one low score, ARND scores for all variables were predictive for group. There was no signicant difference between ARND and FAS/PFAS scores. Conclusions: Modied inclusion criteria could further delineate ARND diagnostic specicity.

Symposium: Quality improvement tools from a regional dual diagnosis psychiatrict services Referral Trends Analysis: A tool for service planning and advocacy P.Turcotte (patti.turcotte@nbrhc.on.ca)*, K. Boss, J. Bruckner, S. Chandler & A. Betzner-Massana *North Bay Regional Health Centre, Ontario, Canada Aim: We describe a dual diagnosis psychiatric outreach teams experiences with undertaking a Referral Trends Analysis to test staff impressions of changes in both characteristics and needs of patients reaching our tertiary service, compared with its regional expansion 10 years previously. Method: Using guidelines, existing literature, and policy direction, we created a questionnaire to be used retrospectively with all new referrals received in the previous year. Both patient demographic questions as well as service systems questions were included. In dyads consisting of a service psychiatrist and the assigned mental health clinician in each of 5 districts, 87 charts were reviewed and questions answered based on consensus. The service program assistant tabulated the results, which were presented back to the team for interpretation and any action recommendations. Results: The survey quantied changes in referral patterns, including age cohorts, diagnosis, level of functioning, and presence/absence of associated supports. The data is useful in targeting professional education as well as community education foci, in supporting specic areas of systemic advocacy and resource re-allocation, and in providing feedback to government bodies. Conclusions: A referral trends analysis can quantify needs of targeted populations, allowing for focused service delivery planning and advocacy. The benets of undertaking a recovery self-assessment for a regional dual diagnosis outreach service P.Turcotte (patti.turcotte@nbrhc.on.ca)*, K. Boss, S. Chandler, K. McEntee, K. Beatty, A. Betzner-Massana & L. Marwick *North Bay Regional Health Centre, Ontario, Canada Aim: We describe a dual diagnosis psychiatric outreach teams experiences with undertaking a Recovery Self-Assessment, and the felt benets. Method: Although existing literature is sparse in terms of applications of recovery principles in dual diagnosis, its components (community integration, empowerment, family involvement) help to avoid the pitfall of sole focus on Axis 1 elements. Two team members of a regional psychiatric service created a brief, relevant Recovery Self-Assessment from existing tools and guidelines, using Survey Monkey (SurveyMonkey.com), a condential on-line tool. The software tabulated the results, which were discussed at a subsequent team study day. Results: Staff feedback indicated this was a positive experience both at a service and individual level. The elements of the survey (and literature review) reinforced the holistic approach utilized by the team. Survey results highlighted areas of strength as well as considerations for improvement. Survey results of a 3 year followup will be shared in terms of lasting effects. Conclusions: Performing a Recovery Self-Assessment is not only a team building exercise but also an opportunity for critical reection and support for a holistic, recoveryoriented approach to the delivery of specialized mental health services for those with an intellectual disability. Recovery-oriented psychiatric services in rural communities: Moving away from site-based hospital teams P.Turcotte (patti.turcotte@nbrhc.on.ca)*, K. Boss, L. Marwick, S. Chandler & J. Nixon *Developmental Disabilities Service, North Bay Regional Health Centre, Ontario, Canada Aim: We describe a rural psychiatric outreach service for persons with intellectual disabilities (ID) in the context of limited specialized human resources, highlighting the importance of multiple partnerships across systems and recovery-oriented approaches. Method: Case-based studies (including pharmacological, behavioural, diagnostic and systems inuences) and program statistics will illustrate the effectiveness of this service model, both in terms of quality indicators and cost effectiveness. Results: Program statistics (20102011) support: (a) frequent patient follow ups close to home (4734); (b) regular clinical supervision between the mental health clinician and psychiatrist (1004 clinical case reviews); (c) regular onsite psychiatric clinics (490 psychiatric appointments in 201011); (d) fewer tertiary hospital admissions (4 of 202 clients served (2%) compared with 1 in 5 inpatients in Ontario with a dual diagnosis (20%) in 20032005); (e) patient/caregiver satisfaction 96%; (f) outside Agency satisfaction 86%; and (g) educational programs delivered (26 community-based). Conclusions: Utilizing community and partnership-based, recovery-oriented psychiatric approaches in rural Northeastern Ontario has been effective in overcoming geographical barriers, building community capacity, and optimizing patient care.
Symposium: Assessment informed resource allocation practices Establishing a next generation of service system using assessment informed resource allocation practices J. Agosta (agosta@hsri.org)*, J. Fortune, L.Teninty & J. Bershadsky *Human Services Research Institute, US Aim: Demand is increasing for intellectual disability services at a time when jurisdictions are having trouble funding services. In response, states seek ways to make their service systems more efcient and equitable. Establishing assessment-informed resource allocation practices provides means for achieving these goals. This symposium describes methods and results stemming from work in six states in the United States. Method: Service recipients are assessed using the Supports Intensity Scale, and are assigned to an appropriate assessment level. Meanwhile, the available service array is reviewed and an associated rate schedule is built. Finally, an algorithm is calculated so that service recipients in each assessment level are assigned an individualized budget according to their need and may receive matching services. In addition, other actions are taken to involve stakeholders, minimize risks associated with change, develop needed system infrastructure, and decide on roll-out options. Results: The resulting system aligns individual needs with the resources they need, no more no less. Conclusions: For years service systems have implemented policy decisions that made them inefcient, unfair, and inevitably unsustainable. Assessment informed resource allocation provides a means of system transformation to realign systems for fairness and efciency. Human service research institute supporting professionals in innovating resource allocation systems in Italy:The ANFFAS scientic board experience J. Fortune (jfortune@hsri.org)* & L. Croce* *Human Services Research Institute, US Aim: In Italy funding is shrinking while demand is increasing for intellectual disability services. In response, each region of care in Italy is seeking ways to make their service systems more efcient and equitable. Establishing assessment-informed resource allocation practices, based on use of the Supports Intensity Scale, provides a way to achieve these goals. This presentation describes their plans, methods and SIS results. Method: Individuals with intellectual disabilities are assessed using the Supports Intensity Scale, and are assigned to an appropriate funding model. Meanwhile, the available service network array is reviewed along with the current funding. A regional model is calculated so that service recipients in each assessment level are assigned an individualized budget according to their support need. Results: The resulting regional systems align individual needs with the resources they need. Conclusions: For years Italian regional service systems have implemented policy decisions that have resulted in systems that are inefcient, unfair, uneven and unsustainable. Resource allocation informed by the Supports Intensity Scale provides a means to realign systems to be efcient and fair for everyone.

Symposium: Investigating staff-client interactions from different points of view Same view but different language: Perceptions of staff-client interactions W. van Oorsouw (W.M.W.J.vanOorsouw@UvT.nl)*, P. Embregts, A. Bosman, A. Jahoda & B. Burford *Tilburg University, The Netherlands Aim: A good quality of interactions with care staff is vital for the social and emotional well-being of people with intellectual disabilities. The question is what constitutes a good interaction? How do staff look at interactions and are their perceptions affected by their training and experience? Method: This study used an adapted version of the Burford Review Process to compare observations of clinicians (C), care staff (CS), and a lay group (LG) about the quality of videotaped staff-client interactions. Results: Agreement was found in immediate impressions about the quality of interactions across the three groups. Observations fell into three main categories behaviours, feelings, and recommendations. Similarities were found across all groups in the behaviours and feelings categories, but the LG had fewer recommendations than the CE and CS groups. Each group used different words to describe similar features. Conclusions: The present study shows how the involvement of participants who are unknown to the actual care staff member and the client in the interaction reveal new information through the observation, judgement, and explanation of interactions. The present study has important clinical implications that will be discussed. Exploring the determination of staff judgements on their own behaviour and behaviour style L. Zijlmans (L.J.M.Zijlmans@UvT.nl)*, C. Huitink, P. Embregts, J. Willem Veerman & L.Verhoeven *Tilburg University, The Netherlands Aim: Staff judgements about their own behaviour or behaviour style in interaction with their clients is determined by several variables. In study 1 the effect of experienced social support on the judgements of behaviour regulation and the role of self-regulation and personality was explored. Study 2 focused on the inuence of staff attributions and emotions on staff judgements about their interpersonal interaction style. Method: Members of four residential facilities for people with intellectual disabilities (ID) completed various questionnaires on several staff variables. Results: Social support exerted its effect on behaviour regulation indirectly through self-efcacy when controlling for neuroticism and experience. In addition, evidence for a relationship between attributions of staff with respect to challenging behavior and experienced emotions in working with clients with ID and challenging behavior was found. Conclusions: The way staff members judge their own behaviour or behaviour style is predicted by several variables like experienced social support, self-efcacy, emotions and attributions. Interactional patterns between staff and clients with borderline to mild intellectual disabilities P. Embregts (P.J.C.M.Embregts@UvT.nl)*, E. Reuzel, A. Bosman, M. van Nieuwenhuijzen & A. Jahoda *Tilburg University, The Netherlands Aim: Client-centered models of care imply that clients should have a collaborative relationship with staff providing support. This study aims to investigate whether dialogues between staff and clients in naturallyoccurring contexts reect this collaborative ideal. Method: Nineteen staff members video-recorded a social interaction with one of their clients. The topic of the interaction concerned an aspect of their support needs. The recordings were transcribed and analyzed using Initiative Response Analysis. Results: Staff were more dominant than clients, albeit the level of asymmetry in the dialogues was relatively small. However, a different pattern of interaction was used by staff and clients. Staff asked more direct questions and sometimes neglected meaningful client contributions. Clients provided more extended responses to staff members questions, thereby helping to maintain the dialogue. However, in a notable minority of communicative exchanges, the clients failed to link with the staff members contribution. Conclusions: The interactional patterns found in this study suggest that staff and clients can face difculties establishing collaborative dialogues on shared topics. Future research should take account of what staff and clients want to achieve in dialogues, along with the nature of their non-verbal communication.
Symposium: Direct services workers and core competencies Road map of core competencies for the direct service workforce: A comparative analysis among sets L. Sedlezky (sedl0003@umn.edu)*, A. Johnson Sirek & A. Hewitt *Research and Training Center on Community Living, University of Minnesota, US Aim: No one nationally-recognized competency set exists to guide the training and development of the long-term services and supports (LTSS) workforce. Core competencies are a necessary component to the development of a competent and stable workforce. This paper provides a comparative analysis of competency sets for direct service workers across sectors. The purpose is to determine the feasibility of a cross-sector core competency-development initiative to promote effective strategies to address workforce challenges. Method: A comparative analysis of seven competency sets was conducted to identify common statements and analyze content against contemporary best practices. Six raters implemented systematic processes comparing content at the skill standard level. Results: Signicant areas of commonality across sectors that could serve as a starting point for core competency development activities were identied. Findings also demonstrate weaknesses/gaps in areas of communitybased best practices, and lack of consistency in conceptualization and operationalization of competencies. Conclusions: The analysis indicates that common competencies exist across sectors. An initiative identifying core competencies and specialization competencies would be an effective strategy towards resolving workforce challenges. The core competency initiative would serve as a foundation to establish best practices in service delivery for individuals with intellectual and developmental disabilities. The NADD Accreditation and Certication Programs: Standards for quality services R. Fletcher (retcher@thenadd.org)* *NADD, Kingston, New York, US Aim: To improve services for individuals who have an intellectual and developmental disability (IDD) co-occurring with mental illness (MI) by developing standards for programs, clinicians, and direct support professionals (DSPs). Method: An expert consensus approach was employed to develop competency-based standards for the care and treatment of individuals who have IDD/MI. Competency-based standards were identied for the Accreditation Program (service organizations). Also, specic competencies were identied for the Clinical Certication Program (licensed clinicians), and for DSPs (care providers). Results: (1) The NADD Accreditation Program is designed to assess whether an agency which serves individuals with a dual diagnosis meets the standards as established by NADD. NADD surveyors assess/review agency practices, policies and procedures. (2) The NADD Competency-Based Clinical Certication Program is designed to measure a clinicians competency as assessed by the NADD standards. (3) The NADD DSP CompetencyBased Certication Program is designed to evaluate a direct care providers competency as established by the NADD standards. On online application and exam are used to make this determination. Conclusions: These three programs are an effort to raise the level of care as well as to provide recognition to those programs and professionals offering quality care. Direct support professionals: Core competencies and their impact on self-determination B. Abery (abery001@umn.edu)* & R.Ticha *Institute on Community Integration, University of Minnesota, US Aim: This presentation will discuss ndings of a multi-year study investigating the extent to which the core competencies (knowledge, skills, attitudes, and behaviors KSAB) of direct support professionals (DSPs) elicit self-determination (SD) among adults with intellectual disabilities (ID) living in community residential settings. Method: Direct support professionals and their supervisors completed KSAB scales developed based on previous research on self-determination and individuals with ID were interviewed using the Minnesota Self-Determination Scales. In addition, interactions between DSPs and individuals with ID were observed within residential settings and coded for the presence of DSP behaviors supportive of SD and SD behaviors on the part of individuals with ID. Correlational and regression analyses are being used to determine the extent to which staff SKAB scales predict DSP behavior supportive of SD and selfdetermined behavior on the part of individuals with ID. Individual KSAB components are also being investigated to determine the extent to which each of these domains has an impact on SD. Results and Conclusions: The ndings of this study will inform the research and practitioner community about the core competencies necessary to effectively build SD of individuals with ID. Training programs for DSPs may subsequently be guided by these ndings.

Symposium: Development and assessment of Consensus Guidelines and tools for primary care Development and assessment of consensus guidelines and tools for the primary care of adults with intellectual and developmental disabilities W. Sullivan (barry.isaacs@surreyplace.on.ca)*, I. Casson, B. Hennen & B. Isaacs *Surrey Place Centre, University of Toronto, Ontario, Canada Aim: This symposium will highlight research issues related to developing and assessing the Canadian Primary Care of Adults with Developmental Disabilities: Consensus Guidelines (Sullivan et. al., 2011). Method: The symposium to focus on: (1) population-based data from Ontario to demonstrate disparities in health and health care between individuals with IDD and those in the general population, (2) research issues in developing and implementing consensus guidelines and tools for the primary care of adults with IDD, and 3) a controlled trial evaluating a training course on the guidelines and tools provided for primary healthcare practitioners. Results: By the end of the symposium participants will have an understanding of research and assessment issues related to developing guidelines and tools for the primary care of adults with IDD and assessing knowledge translation strategies and their impact on training and practice patterns. Conclusions: Research conrms the existence of health disparities for adults with IDD living in Ontario. Primary care providers in Ontario also indicate that they have many learning needs and system challenges in providing effective primary care to adults with IDD. The guidelines and tools are an important initiative in promoting the primary care and addressing health disparities for this population. Symposium: Leadership Shaping policy and provision for people with intellectual disabilities in England: Change from within N. Genders (ngenders@dmu.ac.uk)* & B. Brown *De Montfort University Leicester, England Aim: The last three decades have seen a movement away from exclusive services to those shared by non-disabled citizens, and health care professionals have been at the centre of many of these changes in England as people with intellectual disabilities (ID) moved towards a more inclusive and integrated lifestyle. Method: Key changes in policy regarding people with ID in England are examined through the experiences of 20 nurses for those with ID elicited via life narrative interviews. Participants describe their roles in assisting clients in moving from segregated, residential accommodation to supported living in community settings. Results: A consistent theme across all 20 narrative interviews was that of change from within, where practitioners described themselves seeking to humanise the physical environment, enhance the emotional climate and emancipate their clients by increasing the variety of life choices available to them. Conclusions: The UK Government White Paper Valuing People (DH 2001) was based on four principles of Rights, Independence, Choice and Inclusion. Despite the sometimes austere nancial climate, health care professionals have sought to prompt change, actualise the principles of Valuing People, and support people with intellectual disabilities to live, work and play in a more diverse range of settings in society. Organizational logic, human resource practices and the experiences of direct support workers R. Hickey (hickeyr@queensu.ca)* *Queens University, Kingston, Ontario, Canada Aim: The provision of intellectual disability services have shifted from large, state-run institutions to community-based systems of support. Part of this transformation involves a shift in the organizational logic of service providers away from work practices which emphasize custodial care towards a focus on community development. This study explores whether this transformation is reected in the human resource management (HRM) practices of service providers and the work experiences of direct support workers (DSW). Method: This study is based on the matched pair set of survey instruments measuring work experiences of DSWs (n = 1,570) and HRM practices by service providers (n = 10). This dataset provided a total of 1,106 matched pair observations. Results: Exploratory factor analysis showed promising results for a construct design to measure the two distinct scales of organizational logics: 1) community development, and 2) safety and protection. Initial binary and multiple regression analyses indicate that the organizational logic of community development is negatively associated with a DSWs sense of personal accomplishment. Conclusions: The study suggests that the ideals of community development promoted as part of the transformation outstrip the service systems capacity to achieve those personal outcomes.
Symposium: Service planning Person-Centred Planning (PCP) in Ontario: Does it adhere to the core elements of PCP? M. Ashworth (melody.ashworth@utoronto.ca)*, L. Martin, H. Ouellette-Kuntz,V. Cobigo & R. Hickey *University of Toronto, Ontario, Canada Aim: Person-centred planning (PCP) has become common practice in the eld of intellectual/developmental disabilities (I/DD), though much of what is understood about PCP remains ideological, and some question the extent to which the processes that have been implemented are truly reective of the principles underlying PCP. Method: A review of the literature permitted the identication of 14 core elements of PCP that were validated by stakeholder groups. This study is based on an online survey of developmental service organizations in Ontario to help understand whether the planning landscape in Ontario reects core elements of PCP practice. Items in this survey address 10 of the 14 core elements of PCP. Results: Preliminary results are based on the responses of directors/managers from 129 organizations primarily providing services to adults with I/DD. Responses indicate that planning practices in Ontario adhere to most of the 10 identied core elements. Over one third of organizations report using their own home-grown PCP tools, and about half report using a blend of formal and informal PCP tools. Conclusions: PCP in Ontario follows a common framework though it is also individualized as reected in the diversity of planning tools used to meet the needs of the individual. The cost and outcomes of skilled support for people with servere intellectual disability and complex needs J. Beadle-Brown (j.d.beadle-brown@kent.ac.uk)*, J. Mansell, J. Leigh, B. Whelton & L. Richardson *Tizard Centre, University of Kent, England Aim: Previous research has identied the importance of staff having skills in enabling people with severe or profound intellectual disabilities to experience a good quality of life (i.e., the role of person-centred active support). However much of the previous research has looked at a limited range of quality of life indicators. The aim of this study was to explore whether people using services are receiving skilled support in a range of person-centred approaches according to their needs, whether they have better outcomes where staff are more skilled, and whether such support was associated with higher costs. Method: Observational methods, staffcompleted questionnaires, and managers interviews were used to collect data on needs, characteristics, services received, and outcomes of people using services, as well as the characteristics and views of staff and managers. Results: This paper will present data on the outcomes of those using services, the support they receive, the infrastructure present, and the cost associated. Conclusions: Implications of the ndings for service design and organisation as well as support for staff will be discussed. The assessment of need of support to allocate inclusive supports in services and communities M. Lombardi (marcolombardi.psy@alice.it)*, L. Croce, R. Cavagnola & M. Nolani *Catholic University, La Nuvola, Italy Aim: We describe the need of support proles of the population in northern Italy relating it to clinical, sociodemographic parameters and activity settings to comprehend the correlations between the need of support and other clinical and functional variables. Understanding the statistical nature of such correlations make it possible to evaluate the utility and value of usual functional and clinical information in order to plan and manage quality of life-oriented supports. Method: Sample: 500 users from 17 organizations. The need for support was analyzed using the SIS (Support Intensity Scale). The diagnosis and functioning were assessed using the instrument to allocate resources (named SIDi) by the regional health system of Lombardy, based on ICD 9 CM and ICF evaluation (WHO). Statistical analysis (correlations, ANOVA, t-test) were conducted. Results: SIS Global index or subscale index correlate with some clinical variables. Single diagnosis groups have an increased need of support. The need of support index is a better descriptor for resources to be allocated than SIDI. Conclusions: The assessed need of support indicated a specic set of functional information which could not be predicted or correlated with other functional or clinical variables, such as the diagnosis or the functioning.

Symposium: Staff training and professional development Implementing a strength-based approach:The importance of an extensive staff training program C. Huitink (C.Huitink@UvT.nl)*, P. Embregts, J. Willem Veerman & L.Verhoeven *Tilburg University, The Netherlands Aim: A strength-based approach ts with current ideas regarding the focus on client possibilities and strengths as well as client empowerment. However, implementing this approach in actual practice seems quit difcult for care staff. Therefore, in two facilities for youth with mild intellectual disabilities and behaviour problems a staff training program was developed. The effectiveness of this training program was evaluated. Method: The staff training program included: (1) a basic training, (2) a second training and (3) a coaching-on-the-job program. Training goals were aimed at increasing knowledge, skills and insight, as well as the generalisation of these aspects to the actual worksetting. Measurements included questionnaires as well as observations (real-time and role-play). Results: As a result of the training program, knowledge and insight increased with different outcomes for the basic and second training. After the second training skills like noticing clients adequate behaviour also increased. However, no signicant changes were observed for several other skills. The difculties of generalisation to the actual practice were conrmed by the rst results of the coaching-on-thejob program. Conclusions: This study gives us more insight into important aspects that need to be considered when trying to implement a strengthbased approach in actual practice. Staff-training project: Conscious care for complex clients W. van Oorsouw (W.M.W.J.vanOorsouw@UvT.nl)*, P. Embregts, A. Bosman & A. Jahoda *Tilburg University, The Netherlands Aim: Care staff serving clients with intellectual disabilities and severe behaviour problems need support in dealing with a difcult and demanding job. In this project, the effectiveness of a package of staff interventions was evaluated. Method: Over ve years, three different interventions were evaluated. The effectiveness of in-service aggression-management and in-service emotion-management were assessed by using a pre-post-test with control group design. Coaching on the Job (COTJ) was assessed using single-subject designs. Measures included: questionnaires, openended written assignments and observations. Data were quantitatively and qualitatively analysed. Results: At the time of writing this abstract, we found both in-service programs to be effective in improve knowledge regarding CB, quality of physical-intervention skills, and personal reection regarding stress management. The data regarding COTJ are about to be analysed. Conclusions: The combination of in-service training and COTJ is preferred when training staff how to deal with complex clients. Effects of in-service training will only be maintained using regular refreshing. COJ helps to support the transfer from classroom to daily practice. Staff training and professional development focusing on interventions and relationships P. Embregts (P.J.C.M.Embregts@UvT.nl)* & M. Hermsen *Tilburg University, The Netherlands Aim: There is a growing tendency to construe the practice of professional care not only in terms of care interventions but also in terms of care relationships. The theory of care ethics concentrates on values essential in building relationships, such as responsibility, care, and involvement. Method: Semi-structured qualitative interviews were conducted with 28 support staff working with people with mild intellectual disabilities. Scientic research methods were combined with ethical reection to examine the internal morals of support staff. Results: According to participating support staff, an afliation with and recognition of the client are the basis of professional care. Conclusions: Support staff perceive the precedence given to the smooth running of production processes over investment in direct contact with clients to be a very real threat to quality of care. The results of this study are discussed with respect to staff training and staff research to nd an adequate balance between professional distance of support staff and empathy, between protection and stimulating autonomy.
Symposium: Outcomes of community living in Victoria, Australia Structures and processes that embed positive regard for residents as a dimension of the group home culture C. Bigby (c.bigby@latrobe.edu.au)*, T. Clement, M. Knox, J. Beadle-Brown & J. Mansell *Department of Social Work and Social Policy, La Trobe University, Australia Aim: A dimension of the culture in group homes is staff regard for residents. In underperforming group homes staff regard residents as being not like us (Bigby, et. al., 2009). We hypothesized that the opposite pole of this dimension, to be found in high performing group homes, would be staff regarding residents positively. Method: The ndings reported are part of a larger study examining culture in group home. A series of indepth case studies were conducted in high performing group homes using participant observation, interviews, and document review to as data, which were analyzed using qualitative methods. Results: A consistent pattern of staff practices and talk was found that demonstrated a positive regard for residents by staff, seeing them as being like us. This regard was established, operationalised, and embedded in cultural norms through structures such as a formal policy about language and processes such as peer monitoring and practice leadership. Conclusions: We contrast these ndings with the processes and structures found in underperforming group homes. These nding provide insights into the explicit and continuing attention required to sustain positive regard for residents in everyday staff practices and to turn abstract values into concrete realities. An observational measure of practice leadership J. Beadle-Brown (j.d.beadle-brown@kent.ac.uk)*, C. Bigby, J. Mansell & L. Mountford *Tizard Centre, University of Kent, UK Aim: Mansell et. al., (2005) suggested that practice leadership by frontline managers was critical to implementation of active support. Recent research has explored the role of practice leadership using staff-rated measures of practice leadership. However, staff rated measures are prone to a number of biases. Method: This paper reports on the development of an observational measure of practice leadership, which uses information drawn from both formal and informal observations, interviews with the managers and staff, and a review of paperwork, to allow ratings on ve domains: (1) coaching and modelling, (2) allocating staff to maximise opportunities to support the quality of life of the people living in the service, (3) support and development of individual staff through supervision, (4) use of team meetings to review and develop good support and outcomes for the individuals concerned, and (5) the focus of managers on the quality of life of the people they support. Results: Preliminary data will be presented on the reliability and validity of the measure from a pilot and then readministration in 30 services across 6 organisations. Conclusions: The use of the measure for research about the implementation of active support and further research in this area with be discussed. Implementation of active support in Victoria, Australia: An exploratory study J. Mansell (j.mansell@kent.ac.uk)*, J. Beadle-Brown, C. Bigby & L. Mountford *Tizard Centre University of Kent, UK Aim: Research over three decades has found two factors which explain the quality of life of people with intellectual disability: (1) the level of ability of the person, and (2) whether staff enable them to be engaged in meaningful activities and relationships. Although active support has been implemented in a number of organisations in Victoria, there is little evaluation of its implementation. Method: Data is presented on the characteristics, quality of life, and quality of support experienced by 151 people with intellectual disabilities, provided for by six organisations. Data were collected using observational methods and staff-rated questionnaires. Results: The people supported were on average more able than in other published research. They spent just over 50% of the time engaged on average (range 0100%), but with very little support from staff. People received contact from staff for less than 8 minutes in every hour. Active support was in general weak to mixed, however, in the one organisation which provided good active support, the amount of assistance and contact was higher as was levels of engagement, even for those with more severe disabilities. Conclusions: The paper will discuss the reasons for and the implications of these ndings.

Symposium: Knowledge sharing and service coordination The public health role of Local Area Coordinators in Scotland: An evaluation M. Brown (m.brown@napier.ac.uk)*,T. Karatzias & L. OLeary *Edinburgh Napier University, Edinburgh, Scotland, UK Aim: People with ID experience signicant health inequalities. Scotland introduced the role of Local Area Coordinator a decade ago to support inclusion within local communities and build community capacity. To date no study has specically focused on their role in addressing health needs. The aim of the study was to identify the public health role of Local Area Coordinators (LACs) in reducing the health inequalities of people with intellectual disabilities. Method: A mixed-methods design was adopted to collect data using online questionnaires, semi-structured interviews, focus groups and telephone interviews with a sample of 105 LACs and Service Managers from across Scotland. Results: The role of the LACs focused on community-based outcomes and integration rather than specically on achieving health-related outcomes. LACs have developed relationships with specialist ID services, and collaborative working is evident. There is scope to develop the role of LACs in general health services. Conclusions: There is a need to develop the knowledge-base of the health needs of people with ID and ensure standardised approaches within the LAC role to addressing health needs across Scotland to support their contribution to reducing health inequalities. Sharing and connecting knowledge on The Knowledge Square M. Kersten (mkersten@vgn.nl)*, M. van Noort & M. van der Rijt *Vereniging Gehandicaptenzorg Nederland, Utrecht, The Netherlands Aim: A quick scan of activities, needs and infrastructure pertaining to the knowledge in the Dutch disability care sector (Schuurman, 2011) found that much would be gained both in content and in infrastructure by making connections. It was also found that it is not the availability of the knowledge that is the main problem, but rather the translation, application, accessibility, and sharing of that knowledge. How can this challenge be handled and what would help researchers with this? Method: The Knowledge Square for the Disability Care Sector was initiated in 2008 by VGN, Vilans and MEE Nederland to share knowledge and experience and to make connections between providers and users of evidence-based knowledge, and practice-based knowledge. The central theme is both supply and receive. Results and Conclusions: The poster shows what he Knowledge Square for the Disability Care Sector has to offer in this area, both digitally and physically. The website, www. kennispleingehandicaptensector.nl, contains information about meetings, networks, courses, and training.There are many opportunities on the square for researchers, professionals, care providers, clients and their family to meet each other and to create, share, translate and connect knowledge. Trends in the use of Australian disability services 20052010 I. Dempsey (ian.dempsey@newcastle.edu.au)* *University of Newcastle, Australia Aim: The rate of identication of disability in Australia has increased markedly in the last decade, but the repercussions of this increase for community disability services are not clear. This paper examines the extent of growth in Australian disability services in the last ve years. Such services are provided for accommodation and a range of community supports, for respite care and for employment. Method: Secondary use is made of reports from the Australian Institute of Health and Welfare on disability support services. Original data were sourced from annual censuses completed by all Australian disability services. Results: Overall use of disability services increased by 47% from 20052010, while the total Australian population increased by 9% over the corresponding period. The growth in services was most pronounced in employment and in community access services. Conclusions: Growth in the use of Australian disability services shows no sign of abatement; however, such growth is unsustainable in the long-term. The implications from economic and social justice perspectives are discussed.
Symposium: Autism spectrum disorder Developing of distributed case discussion support system for analyzing the behavioural factors of ASD people Y. Fujii (ogawa@hyogo-u.ac.jp)*, H. Ogawa & M.Takano *Hyogo Univerisity of Teacher Education Aim: We developed a distributed case discussion support system for analyzing the behavioural factors of people with autism spectrum disorder (ASD). This system is based on the hypotheses that teachers can analyze behaviour factors by expressing the intentions of the target child through balloon-type video annotations and can judge the propriety of their own analysis by referring to video annotations inserted by outside experts. The purpose of this presentation is to show the trial use of the system. Methods: The target child was a 10 years old male diagnosed with ASD. We videorecorded the target child for one day of school. Six participants of graduate school analyzed and discussed about the target video using the system. First, participants expressed the intention of the target child by a balloontype video annotation. Next, participants compared with the balloon-type video annotation, which an outside expert inserted. Finally, we conducted questionnaire survey and interview. Results: Every participant was able to consider the behaviour factors and increased their awareness by referring to other outside experts video annotations. However, they interpreted some of the outside experts video annotations falsely. Conclusions: We will develop the function that shows the ground of inserting video annotation.
Treatment of people with autism in the Republic of Macedonia J.Troshanska (jasminaiva@gmail.com)* & M.Trajkovski *Dr Zlatan Sremec, Skopje, Macedonia Aim: There are a number of reasons, which evoke concern for the treatment of people with autism. One of those reasons is the constant increasing number of children with autism. The aim of the study that we conducted was an assessment of the views and the opinions for the treatment of children with autism in the Republic of Macedonia. Method: The research was conducted with 100 participants parents of a children with autism and professionals who work with their children. According to the parents, today, autism is commonly diagnosed between the ages of 3 and 4 years. From the results, 87.5 % of the parents trust the special educators, and 74.21 % believe that educators should work with person with autism throughout the lifetime. Half of the professionals did not feel condent enough in working with children with autism, and 61 % of parents said that communication with other parents who have a child with autism helped them to overcome the pain they feel. All respondents agreed that for improving the quality of treatment we need to adopt legislation, work according to a protocol, and provide further training of the staff and the parents for working with children with autism.

Symposium: Inequalities experiences by people with ID Health inequalities experienced by people with intellectual disabilities in comparison with the general population S.-A. Cooper (sally-ann.cooper@glasgow.ac.uk)*, A. McConnachie, L. Allan, C. Melville, E. Smiley & J. Morrison *University of Glasgow, Scotland, UK Aim: To determine whether the extent of deprivation characterizing the area a person lives in affects their access to services, hence contributing to health inequalities. Method: A cross-sectional study design was used. Interviews were conducted with all adults with intellectual disabilities within a dened location (n = 1,023), and their medical records were reviewed. The extent of area deprivation was dened by post-code. Results: Area deprivation did not inuence access to social supports, daytime primary health care services, or hospital admissions, but people in more deprived areas made less use of secondary outpatient health care [rst contacts (p = 0.0007), follow ups (p = 0.0002)], and more use of accident and emergency care (0 = 0.02). Women in more-deprived areas were more likely to have had a cervical smear; there was little association with other health promotion uptake. Area deprivation was not associated with access to paid employment, daytime occupation, nor respite care. These results were unchanged after adjusting for type of accommodation and level of ability. Conclusions: Deprivation may not contribute to health inequality in the population with intellectual disabilities in the same way as in the general population. Focussing health promotion initiatives within areas of greatest deprivation would be predicted to introduce a further access inequality.
Symposium: Health services Exploring the theoretical models and conceptual frameworks of health promotion for people with intellectual disabilities L.Taggart (l.taggart@ulster.ac.uk)* & L.-M. Hanna Trainor *University of Ulster, Northern Ireland Aim: The role of promoting the health of people with intellectual disabilities (ID) is complex and multi-dimensional. Current health promotion theoretical models and conceptual frameworks need to be examined in light of the needs of this population. The aim of this study was to explore the health promotion needs of people with ID. Method: Thirteen one-to-one semi-structured telephone interviews were undertaken with a range of academic, research, and clinical experts in the eld of ID and health around the world. The interviews were analysed using thematic content analysis. Results: Five inter-related themes were identied: (1) health promotion and its function; (2) enablement through education, training and information; (3) advocacy through sharing and collaboration; (4) person-centredness; and (5) mediation by challenging/balancing tensions. Conclusions: The ndings echo the theoretical frameworks of health promotion as proposed by the Ottawa Charter (1986) and Nutbeam (1996). However, the ndings challenge these current theoretical models to adapt to meet the needs of this population. This presentation will propose a new theoretical model and conceptual framework of health promotion for people with ID. Developmental Disability and Dual Diagnosis A study of the Canadian public policy context S. Morris (susan_morris@camh.net)* & H. Gough *Dual Diagnosis Program, Centre for Addiction and Mental Health, Toronto, Ontario, Canada Aim: In Canada health and social care provision is the sole jurisdiction of the 10 provinces and 3 territories. Previous studies have reported uneven availability of mental health services for people with developmental disabilities between jurisdictions. Understanding the public policy context provides a more informed starting point for national discussion, further research, and international comparison. Method: A review of a national database of Canadian legislation was followed by a rigorous scan of provincial/territorial websites to capture policy, along with key informant interviews to ensure that all relevant legislation and policies were fully considered. Results: The ndings conrm the hypothesis that denitions of developmental disability and dual diagnosis are uneven across provincial/ territorial legislation and policies. The inclusion of dual diagnosis in policy is similarly uneven. The provinces that have enacted legislation specically pertaining to developmental disabilities refer to dual diagnosis in policy. Conclusions: An internet-based approach facilitates access to government information that may otherwise be difcult to obtain. This framework for categorizing results provides the basis for comparison between countries with a similar decentralized national legislative and policy context. Further study of the association between specic developmental disability legislation and dual diagnosis policy in relation to service availability is necessary. Development of a state system for optimal health as a cornerstone for individuals with intellectual disabilities S. Modell (scott.modell@tn.gov)*,T. Cheetham & S. J. Modell *Department of Intellectual and Developmental Disabilities, Ofce of Policy and Innovation, Nashville, Tennessee, US Aim: Despite protections afforded by legislation, there continues to be abundant evidence of health disparities for people with intellectual disabilities. Designing a service delivery system to increase quality of life with optimal health as a cornerstone is a signicant endeavor requiring systemic, cultural, and programmatic change. This presentation will discuss one U.S. states formulation and implementation of such a healthcare system. Method: Setting a standard of optimal health is critical as a foundation for quality of life. In 2011 the new Tennessee Department of Intellectual and Developmental Disabilities was created. This presentation will outline the process from establishing healthcare as one of three overarching Department goals to the rationale and strategies in developing and implementing a healthcare system throughout Tennessee. Results: In the context of the large, complex U.S. healthcare system the strategies employed, barriers encountered, and progress to date in developing a healthcare system for people with intellectual disabilities will be reported. Conclusions: It is rare for a state to have healthcare for people with intellectual disabilities as a primary goal. This presentation will review one states journey towards that goal.
Comparison of disability and racial/ethnic minority groups in social determinants of health C. Drum (charles.drum@unh.edu)*, M. McClain & W. Horner-Johnson *Institute on Disability, University of New Hampshire, US Aim: In the United States (US), health inequity has traditionally focused on racial and ethnic (R/E) groups and excluded people with disabilities (PWD). This presentation will compare PWDs and R/E groups in socioeconomic status and health outcomes. Method: Data from the US Behavioral Risk Factor Surveillance System (n = 404,509), a state-based, random digit dialed telephone survey conducted in all 50 states and territories, was analyzed using Stata 10.1. Results: The disability population is larger than all R/E groups. Fewer PWDs (43%) in the US were employed compared to R/E populations. Thirty-three percent of PWDs earned $25,000 or less and thirteen percent of PWDs had less than a high school education, exceeded only by Hispanics. All R/E minorities reported better health status than PWDs. Compared to R/E populations, PWDs were more likely to smoke, less likely to exercise, had higher rates of cardiovascular events, obesity, and diabetes, and were more likely to report cost as a medical care barrier. Conclusions: PWDs in the US experience many social determinants of health in greater proportions than racial and ethnic minority populations. Health equity efforts should include disability as a specic population group.

Symposium: Returning to the community Returning to the community Adults with intellectual disabilities dancing between welcome and rejection N.-C. Chen (ncchen@kmu.edu.tw)* & S.-J. Zeng *Faculty of Medicine, Kaohsiung Medical University, Taiwan Aim: The study focuses on the experiences of persons with and without ID living in the community together. The research explores the process of their attitude change toward supported community life and analyzes the factors which inuence the social inclusion of persons with ID. Method: Research data is collected by eld-/ participations-observation and in-depth interview with residents with and without ID. A hermeneutic-phenomenological approach will be implemented to describe and analyze the collected data. Results: Foreign-ness belongs to everyday life of beings and is the key point to a successful social inclusion. Foreign-ness to persons with ID determines whether they are accepted or rejected by other residents. Foreign-ness to other residents without ID affects the will of persons with ID to participate the community life. Conclusions: The study evidences foreign-ness as a dynamic state but not static, which is easily affected by certain events in all day life. A successful social inclusion for persons with ID depends on the attitude of both residents with and without ID. A platform for both sides to establish relationships makes contributions to real equal social inclusion. Community living changes lives: Successful transitions from an ICF/MR A. Martin (Angela.Martin@wayne.edu)* & W. Allen *Developmental DisabilitiesInstitute,Wayne State University, Michigan, US Aim: In 2009, the state of Michigan closed its last intermediate care facility for individuals with intellectual disabilities (ICF/MR). The Developmental Disabilities Institute (DDI), Wayne State University, collaborated with the Michigan Department of Community Health (MDCH) to implement a project monitoring to assess the effectiveness of supports, identify concerns regarding the implementation of community-based supports, and serve as a resource for the transition process. Method: DDI monitored the transition process of 100+ individuals from the institution to the community, which included a review the individuals supports and direct interviews with the individual, family and/or guardian, and key support staff. Results: The individuals who resided at Michigans last institution have complex and intense support needs and have successfully transitioned from segregated to community-based supports. The successful transitions included advanced individual planning, real choice of supports, preparing key support staff, and systemic changes to meet the diverse needs of the service system. Conclusions: Michigan is now one of eleven states in the US that does not operate an ICF/MR. This session will share stories about how change in environment can totally change a persons life. Many lessons were learned about what may occur when transitioning from an institution to the community.
Symposium: Intellectual disability and administrative datasets: An international perspective Identifying persons with intellectual and developmental disabilities using administrative datasets: A Canadian perspective R. Balogh (baloghr@yahoo.com)*, E. Lin,Y. Lunsky, H. Ouellette-Kuntz, V. Cobigo & B. Isaacs *Centre for Addiction and Mental Health Toronto, Ontario, Canada Aim: The aim of the study was to show how administrative health data held at the Ontario-based Institute for Clinical Evaluative Sciences (ICES) was used as a source of information to identify persons with intellectual and developmental disabilities (IDD) in order to conduct health services research. Method: Researchers from the Health Care Access Research and Developmental Disabilities (HCARDD) project accessed information from ve different health administrative databases at ICES to identify a group of persons with IDD. A large dataset from a social service support program will soon be linked to the ve health databases, thus allowing the researchers to conduct a case validation study. Deliverables of the HCARDD project include results showing measures of quantity and quality of primary care for persons with IDD living in Ontario. Results: Using the 5 health administration databases, the project has identied 45,000 persons with IDD. The numbers identied from the various databases vary according to how long the database has existed and its function. Conclusions: Identifying persons with IDD for epidemiologic purposes has progressed and different jurisdictions have used different approaches. The strengths and limitations of using data from ICES will be discussed. Denition and case nding for health surveillance in the US population with intellectual disability A. Bonardi (alexandra.bonardi@umassmed.edu)*, E. Lauer, J. Bershadsky & S.Taub *E.K. Shriver Center, University of Massachusetts Medical School, US Aim: To establish the necessary foundation for monitoring the health of adults with intellectual disability in (US) national data collection efforts. Method: Researchers reviewed current denitions and convened a consensus panel to developed guidance for an operational denition of intellectual disability (ID) that may be applied to existing and future surveillance. Recommendations for strategies for effective surveillance in this population were developed through extensive review of current US surveillance and identication of best practices. Results: An operational denition of ID will be presented, with examples of its application in existing and future surveillance in the context of the ICF and clinical diagnostic systems. Recommendations for US surveillance will be presented in the context of local and international surveillance efforts, and potential sources of error will be discussed. Conclusions: The application of a rational and consistent case denition is essential to surveillance in the population with ID. The proposed denition aligns with ICF framework of disability. Recommendations for surveillance that integrates practical concerns at local and national levels will be discussed. Estimating the prevalence of intellectual disabilities in Scotland S.-A. Cooper (sally-ann.cooper@glasgow.ac.uk)*, E. Smiley, L. Allan & L. Curtice *University of Glasgow, Scotland Aim: To determine how many adults in Scotland have intellectual disabilities, and how and why this might vary. Method: Literature review, then comparison of information within Scotlands routinely collected datasets, then active attempts to identify and map the population. Results: The different methods used provided marginally-differing results. There is variability in locations, sometimes due to historical service and migration patterns. Conclusions: These patterns are important to understand to improve the way that services are planned and delivered for people with intellectual disabilities.

Symposium: Organizational change Social transformation strategies: 10 thresholds for organizational change towards inclusion in Latin America D. Gonzlez Castan (info@itineris.org.ar)* & A. S. Aznar *ITINERIS Foundation, Argentina Aim: To identify organizational factors which support social transformation towards inclusion, and to construct a model that explains the organizations evolution through time. Method: Forty-seven (47) organizations were analyzed using a set of 10 indicators that related to three organizational domains (organizational framework, processes, and results). The project compared retrospectively the performance, both pre- and post-training, of a subsample of 27 organizations. Results: Ten (10) thresholds for organizational change were identied and a preliminary version of an Organizations Performance Scale was developed. Independent groups showed less potential to sustain change, while larger private organizations and small government organizations had greater amounts of available resources, and the greatest inertia in terms of change towards inclusion. Conclusions: Organizational change towards inclusion is complex. It occurs when incorporating universal principles and regional components. Synergy among different actors is needed to sustain these changes. (Note: session with translation to Spanish) How to achieve strategic changes in the developing world: 12 years of experience in Argentina P. M. Stephan (pstephan@shaw.ca)*, D. Gonzlez Castan & A. S. Aznar *Parkland CLASS, Red Deer, Alberta, Canada Aim: To support the development of emerging NGOs in Latin America. Method: Professional partners in Argentina were supported in their strategic development through technological transfer and organizational incubation provided by a Canadian host organization. This involved the provision of funding, training and instruction, biannual monitoring, and the incorporation of formal business models that focused on strategic planning, social entrepreneurialism, board governance, and organizational structure. Results: After ten years, the key Argentine organization has grown to international prominence, their budget grew by a factor of 20, and they were moving from total nancial dependency on international donors, to a point where international funds now account for less than 33 per cent of their annual budget. Conclusions: Organizational incubation and technological transfers of new business models signicantly benet emerging NGOs and exceed the long-term results that typically come from a simple donation of resources. (Note: session with translation to Spanish) Organizational staff training: Proling organizations to predict training efciency A. S. Aznar (info@itineris.org.ar)* & D. Gonzlez Castan *Itineris Foundation, Argentina Aim: To develop a model to predict the efciency of changes in staff training delivered by organizations, moving from prevalent professional practices of service delivery towards a new model based on selfdetermination and supports. Method: Twenty-seven (27) organizations were compared retrospectively, based on the presence or absence of organizational forces that resist the proposed training outcomes (verticality the exercise of power from outside of each social actor, isolation, individualism, passivity and lack of initiative of social actors) and forces that promote the proposed training outcomes (horizontality empowerment, team-work, network, activation and self-management). A preliminary Organizational Forces Scale was developed for this purpose. Results: The evolution of new practices after the training period, fall within three organizational proles which relate to the predominance of each group of the previously-identied organizational forces. Conclusions: The effectiveness of staff training should be measured in the long term. The structure of the training can be adjusted to the organizations forces that are present. (Note: session with translation to Spanish)
Symposium: Knowledge transfer capacity building in services for people with ID/DD Putting knowledge into action: An organizations strengths and needs R. Proulx (rproulx2411@hotmail.com)*, F. Chagnon, A. Peter-Smith, C.Tron-Bradon & M.-J. Gervais *CRDITED de Montral, Qubec, Canada Aim: This project aims at reinforcing the knowledge transfer (KT) capacity of an organization which provides services to people with intellectual disbilities/developmental disabilities. The focus is to identify strengths and needs regarding the use of scientic knowledge in order to develop relevant KT strategies. Method: Open-ended questions were answered by a group of managers (n = 10). These questions were intended to explore seven core organizational competencies that are involved in KT. Another set of open-ended questions were used to help clinical leaders (n = 32) describe their use of scientic knowledge and their interest in beneting from KT activities. Results: The managers agreed on an organizational diagnosis of KT strengths and needs that should be addressed in an action plan. The clinical leaders commented on existing and required KT activities. They also expressed the need to know more about research methods, to reect on the nature of evidence, and to be supported in the learning process. Conclusions: Strategies to facilitate the use of practice guidelines should be embedded in an action plan geared toward organizational capacity building. This project gives insights about a process that can help organizations use scientic knowledge more effectively. Understanding knowledge transfer (KT) processes in social services: A common ground M.-J. Gervais (mathieu.joel.gervais@hotmail.com)*, F. Chagnon & R. Proulx *Universit du Qubec Montral, Qubec, Canada Aim: Research shows that better use of research-based knowledge can help improve services for people with ID/DD. However, there is little consensus on how knowledge transfer (KT) processes should be conceptualized or implemented in order to improve those services. This study aims at proposing a conceptual framework, which synthesizes the existing literature in regard to KT determinants and KT processes in social eld services. Method: This study was funded by an important granting agency in Quebec. A critical review of articles that examined KT determinants and KT processes was rst conducted in databases which cover the core literature in humanities. Based on this literature review, a conceptual framework was proposed. Results: KT determinants can be conceptualized in regards to four main ecological levels (social/political; organizational; individual; knowledge attributes). Four categories of KT processes, which can be implemented at any of these four ecological levels, have also been retrieved. Conclusions: As of now, most of the literature has been focusing on KT determinants and KT processes at the individual level. However, there is limited knowledge on how organizations can develop their capacity to use research-based knowledge, and about setting up KT processes to develop this capacity. Core competencies involved in the use of knowledge in service organizations R. Proulx (rproulx2411@hotmail.com)*, F. Chagnon, C.Tron-Bardon, M. Gervais & N. Houlfort *CRDITED de Montral, Qubec, Canada Aim: This presentation focuses on the development of a framework that can guide knowledge transfer (KT) capacity building in organizations working in social services eld. Method: An integrative model of the organisational capacity to use knowledge has been developed and applied with 5 social services organisations. These partners worked with the research team within a knowledge co-construction framework, to translate the model in diagnosis instruments and to apply these instruments to their own organisational context. They collected data throughout their services via a close-ended questionnaire. A group of leaders used a reexive questionnaire to develop a deeper understanding of the organisations capacity to use knowledge to improve practices. Results and Conclusions: Data showed similar portraits across partner organisations (dominant hierarchic and rational organisational cultures) and 21% of respondents said they used scientic knowledge rarely or never. The organisational capacities to use knowledge that were identied as priorities by most organisations were vision, leadership, reection, interpretation, integration and adaptation.

Symposium: Collaborative mental health care for adults with intellectual disabilities: Moving from policy to practice Collaborative mental health care for adults with intellectual disabilities: Moving from policy to practice S. Chandler (sharon.chandler@nbrhc.on.ca)*, K. Boss, K. McEntee, K. Beatty, S. Chandler, A. Betzner-Massana & P.Turcotte *North Bay Regional Health Centre, Ontario, Canada Aim: To explore the application of models of collaboration between a specialized psychiatric service for individuals with ID/DD, primary care providers and behavioural services in everyday practice. Method: Our service has sought to address the lack of clarity regarding the application of collaboration principles by: (1) formulating a list of different models of collaboration; (2) conducting a survey of primary care providers and behavioural services to clarify their preferred method of collaboration; and (3) developing a guide for the management of adults with ID/DD in the emergency department, which will be introduced to ER departments in our region along with a training session. Results: The models of collaboration, ER information sheets, and preliminary survey results will be presented. Conclusions: Although general principles regarding collaborative mental health care have been elucidated, specic real-life approaches have received little attention. This study represents an attempt to provide more specic guidance around collaboration in the management of dual diagnosis patients, whose management requires an even greater level of collaboration than does that of the non-disabled population.
Symposium: Staff training Outcome focused training for direct support professionals: A multi-site controlled evaluation of a training and technical assistance intervention for support providers D. K. Nord (nord0364@umn.edu)*, A. Hewitt & M. Bogenshutz *University of Minnesota Institute on Community Integration, US Aim: The training of the direct support professional (DSP) workforce is an important component to supporting people with intellectual and developmental disabilities (ID/DD). Such training develops DSP skills and knowledge, facilitates career advancement, and meets the regulatory requirements. The professional skills DSPs must perform are many, highly personal and relate to workplace outcomes at multiple levels. Little research exists to explain how agency, site, and DSP characteristics and interventions affect the type, quality and impact of supports people with ID/DD receive (Schalock, et al., 2007). Method: Standardized intervention includes a training and technical assistance model that implements a widely-used online, competency-based training program, with additional mechanisms to incorporate learning into practice. Fifteen human service organizations with over 1000 subjects in two states are participating and are randomly assigned into intervention or control conditions. DSPs and consumers provide data including surveys, interviews, observations, focus groups and training record review. Data are collected at baseline and after one year via four highly-validated survey instruments. Results and Conclusions: The ndings related to the differential effects of training on site level DSP and individual outcomes; DSP satisfaction and knowledge; and outcomes and satisfaction of people with ID/DD receiving community supports will be discussed. Process and effects of solution-focused coaching of staff of people with intellectual disabilities: A controlled study J. Roeden (j.roeden@baalderborggroep.nl)*, M. Maaskant & L. Curfs *Baalderborg Groep, Governor Kremers Centre. Maastricht University, Netherlands Aim: Solution-focused coaching (SFC) is an outcome-oriented, competence-based approach aimed at assisting individuals or groups to make desired changes in their personal or work life. The purpose of the study was to illustrate the process and outcomes of SFC with the staff working with persons with ID. Method: Teams consisting of staff who experienced a support problem were randomly assigned to SFC or to coaching as usual (CAU). For 18 experimental teams/60 staff members (SFC) and 23 control teams/61 staff members, (CAU) measurements were taken before SFC, after SFC, and during follow up. Measurements consisted of: (1) goal attainment according to staff, (2) measures of proactive behaviour in teams, and (3) measures of the quality of the staffclient relationships. SFC was compared with CAU with regard to these measurements. Results: The differences between SFC and CAU between measurements (2) and (3) showed to be statistically-signicant, in favour of SFC with regard to proactive behaviour and quality of the relationships. All SFC teams showed signicant progression towards the team goal. Conclusions: The hypothesis that SFC increases proactive thinking in teams and positively alters staff perceptions of staff-client-relationships is accepted. The role of feedback and self-management during adaptive skill training of children with severe intellectual disability A. van Vonderen (annemarievanvonderen@hotmail.com)* R. Didden, J. Pellen & X. Moonen *The Netherlands Aim: Children with intellectual disability (ID) have limitations in their adaptive behaviors. Acquisition of skills depends on training provided by staff. A range of studies are presented that assess the effects of video feedback and other strategies to promote trainer behaviour and prompting in order to improve skills in children with severe ID. Method: In one study effectiveness of instruction and video feedback (VF) was assessed on staff s prompting and trainer behaviour during training with 5 children. During instruction, written information and verbal instruction were given. VF consisted of (a) interrupting a video presentation if an error occurred, (b) providing positive feedback, and (c) prompting trainer to avoid errors. Results: Results showed that instruction did not improve trainer behaviour, while VF was effective in improving trainer behaviour and prompting. Results were maintained at a 5-week follow-up. Conclusions: This study adds to the evidence base regarding the effectiveness of feedback to teach trainer behaviour and prompting to staff. Results will also be presented on outcomes of a range of studies that we conducted regarding this topic. The interventions contribute to the professional development of staff but the ultimate goal is that these children acquire adaptive skills.
Symposium: Policies for a good life in the community I & II Policies for a good life in the community: Sustaining and improving community services for people with intellectual disabilities in difcult times J. Beadle-Brown (j.d.beadle-brown@kent.ac.uk)*, I. Brown, C. Bigby & D. Felce *Tizard Centre, University of Kent, England, UK Aim: Community services do not always match the excellent outcomes of early demonstration projects. In addition, in some countries there is evidence of larger settings being provided. Following a symposium in Iceland in 2011, four key topics were identied for further discussion, ideas were sought from international teams of SIRG members, and draft discussion papers were constructed and circulated to SIRG members on the following topics: (1) rekindling our ideological drive: current ideologies and the relative decline in importance of normalisation and social role valorization, and the growth in importance of human rights and personalisation. (2) establishing the evidence base: the importance of evidence in decision-making about service models; (3) mapping the situation: building on the DECLOC report, mapping the situation in different parts of the world in terms of progress towards good lives in the community; and (4) unravelling the cost effectiveness discourse clarifying and challenging beliefs about cost effectiveness. This symposium will present a summary of these papers and solicit discussion to identify gaps and incorporate wider international perspectives to add to the drafts. A key objective to follow the symposium is production of a peer-reviewed journal special issue.

Symposium: Meaningful engagement and participation in day programs for adults with intellectual disabilities Meaning and engagement in day-program activities W. Mahoney (wmahoney@csu.edu)* *Chicago State University, Chicago, Illinois, US Aim: To describe what adults with intellectual disability (consumers) and staff members nd meaningful in day-program activities and how consumers demonstrate engagement in meaningful activities. Method: The study involved interviews with 10 staff members regarding satisfying and dissatisfying experiences working with the consumers, interviews using visual supports with 10 consumers about day-program activity groups, and four observations of consumers in preferred and less preferred activity groups using the Volitional Questionnaire. The researcher conducted thematic analysis of the interview transcripts and eld notes. Strategies were employed to ensure trustworthiness of the data and analysis including dense description, data triangulation, member checks, peer review, reexive journaling, and the use of a structured observation tool with demonstrated reliability and validity. Results: Staff members found meaning in the dayprogram activities through consumer engagement in program activities and reciprocal interaction, and the consumers found meaning in the day-program activities through doing/active engagement and respectful interaction. The consumers demonstrated meaningful engagement through the following themes: doing activity/initiating action, positive affect, and focused attention. Conclusions: The ndings demonstrated the inuence of a supportive environment, choice, and relationships between consumers and staff members on consumer engagement and participation. Staff member-consumer interaction in a day program W. Mahoney (wmahoney@csu.edu)*, W. Mahoney, R.Yontz & R. Wesley *Chicago State University, Chicago, Illinois, US Aim: To describe how adults with intellectual disabilities (ID) and staff members interact in a day program. Method: The participants included two full time staff members and four adults with ID (consumers) who attended a day program in the midwestern United States. The staff members were each interviewed three times about their experiences interacting with consumers. The consumer experience was observed during the typical dayprogram activities, using the Volitional Questionnaire and supplemental observation notes. The researchers conducted thematic analysis of the data. Trustworthiness of the data methods and analysis was ensured through triangulation, peer review, use of a published observation tool, reexive journaling, and informal member checking. Results: Themes regarding the staff members experience included familiarity with consumers leading to reciprocal interaction and fostering consumer progress. Themes regarding the experience of consumers included active pursuit of connections with others and engagement in program tasks required staff demonstration and continued monitoring. Conclusions: Both staff members and consumers desired interpersonal connections. Staff members additionally valued familiarity with consumers and progress toward consumers goals, whereas consumers beneted from staff members assistance. This has implications for staff member training to facilitate consumer participation. Consumer-consumer interaction in a day program W. Mahoney (wmahoney@csu.edu)*, J. Warlick & T. Segbawu *Chicago State University, Chicago, Illinois, US Aim: To describe how individuals with intellectual disability engaged with peers in a day-program. Method: This was a qualitative, phenomenological study involving observations during the typical group activities in the day program. When a team of two researchers identied an interaction between two consumers, each completed a Volitional Questionnaire and took detailed notes on one of the two consumers who were involved in the interaction. Data collection continued until data saturation was reached after observing 12 interactions (22 consumers total). Thematic analysis was used to name themes to describe interactions between consumers. Multiple strategies including triangulation of researchers and methods and peer debrieng throughout data collection and analysis were used to increase trustworthiness. Results: Themes that reected how consumers interacted with each other included: (1) mutual participation in a task with one taking charge, (2) emotional exchanges set the tone for interaction, (3) reciprocal non-verbal communication to complete a familiar task, and (4) purposeful intent to engage. Conclusions: The consumers found interactions with others meaningful and sought them out. The way the staff members structured the environment and activities affected how much the consumers interacted with each other and the amount of staff member assistance the consumers required to participate.
Symposium: Challenging behaviours and care A care pathway for people with mild & borderline intellectual disability (MID/BID) B. Dieden (diedenb@prismanet.nl)* & J. de Bruijn *Prism Foundation, The Netherlands Aim: Creating a consistent, transparent, and effective pathway of support for people with mild and borderline intellectual disability (IQ range 6085). Method: People with MID/BID and challenging behaviour demand a specic approach, while organisations demand an effective support system. A targeted and focused pathway of care can be helpful not only to meet the organisational dynamics, but moreover can be considered the right answer for this group. Such a pathway creates a safe and secure setting, makes clear what happens and why. All strategic items (e.g., process and support-approaches, climate, situations, relationships, specic therapy modules, family and parent attention) can be formed into a consistent transparent pathway of care. Results: Evaluation shows that people with MID/BID with CB demonstrate an improvement in quality of life on different dimensions. This is supportive for empowerment of the client, his family, and of the staff and their specic competence prole. Conclusions: These ndings support the use of a systematic and focused methodological approach, like a care pathway. Injury reports by carers of people with ID displaying challenging behaviours in the community: A mixed-methods study B.Temple (bev_temple@umanitoba.ca)*,T. Martin, C. Dube, L. Novotny & C. Fyfe *University of Manitoba,Winnipeg, Manitoba, Canada Aim: The aim of this research is to understand how workplace injury occurrence relates to staff education and training about challenging behaviour, to staff perspectives about their use of information from the training sessions, and to the factors most commonly associated with injuries. Method: This mixed-methods study includes four phases. This presentation will focus on phase two, a retrospective audit of the injury reports from an organization which supports 100+ people with ID in community homes and an Applied Behavioral Analysis (ABA) program for children with autism. Quantitative data analysis of the injury reports will determine the most common factors related to injuries. Results: Data about the injuries reported, characteristics of workers, training received and the context in which they work will be delineated. Conclusions: Improving our understanding of the types of injuries and types of reporting being used will assist us in evaluating the characteristics of the care providers, including the context and training associated with the numbers and types of injuries. Identifying the potential changes that could be implemented in these reporting structures will contribute to specic trends and areas to examine in the next phases of the study. Supporting adults with intellectual disabilities who present with challenging behaviours C. Dube (charmd@shaw.ca)*, B.Temple, D. Crooks, J. Mactavish, D.Yu & L. Degner *Applied Health Sciences, University of Manitoba, Manitoba, Canada Aim: The aim of this research was to understand staff experiences of applying training information into community-based residential services for individuals with intellectual disabilities who present with challenging behaviours. Method: Qualitative cross-case study methodology was employed and focused on two community residences governed by an agency offering supports to adults with intellectual disabilities. Results: Unit A ndings highlighted ve key themes emphasizing personal condence, elements of communication, consistency in approach, connection with individuals, teams and leaders, as well as continuing education strengths and barriers. Unit B ndings highlighted ve main themes accentuating personal traits such as caring and nurturing, in addition to communication factors, changes and challenges within the work context, connection to others and perceptions of continuing education. Conclusions: Training to assist staff in preventing, managing, and remediating challenging behaviours exhibited by individuals with intellectual disabilities is readily available. However, training is not readily transferred within the work environments. This research assisted with gaining a direct staff perspective of strengths and barriers to integrating professional development information. Findings highlight the complex interactions including personal traits and relationships within teams and organizational inuences that must be considered to ensure knowledge gained via training is integrated into work settings.

Symposium: Processes and outcomes of deinstitutionalization Processes and outcomes of deinstitutionalization in Ontario: The Facilities Initiative Study R. Condillac (rcondillac@brocku.ca)*, D. Grifths & F. Owen *Centre for Applied Disability Studies, Brock University, St. Catherines, ON, Canada Aim: In 2004, the province of Ontario in Canada announced the closure of the last 3 institutions for people with intellectual disabilities, the last of which closed in April 2009. The vast majority of these individuals moved on to community-living residences, while some moved to long-term care and other housing options. This symposium will report on the Facilities Initiative Study in Ontario. Method: A multi-method approach was used to examine the processes and outcomes of deinstitutionalization. Focus groups/personal interviews were conducted with family members, facility transition planners, receiving agency staff, and clinical support staff from the communities. Surveys of parents and agencies focused on the process of transition, and effectiveness of planning as well as individual outcomes. A set of 9 in-depth case studies were completed over the course of a year to achieve a thorough picture of the successes and remaining needs for those individuals. Finally a longitudinal study included 115 individuals and examined change over time, and predictors of relevant changes. Results and Conclusions: This symposium will highlight individual and group outcomes, and discuss the effectiveness of the person-centred planning approach used, and the lessons for jurisdictions planning institutional closures.
Symposium: Housing Home Sharing: A study of resident and stakeholder views R. Hole (rachelle.hole@ubc.ca)*,T. Stainton, C. Robinson, C. Crawford & S. Lige *School of Social Work, University of British Columbia, Canada Aim: Home Sharing is a residential option similar to adult foster care where adults with intellectual disability reside with a non-disabled individual or family (non-biological and/or not-related) and where the caregiver is paid for her/his caring labour.This paper outlines ndings of a qualitative study that explored the experiences of individuals living in Home Sharing living arrangements (self-advocates and home share providers) and family members of adults with intellectual disabilities living in a Home Sharing living arrangement. Method: Semi-structured interviews were conducted with adults with intellectual disabilities, home share providers, family members, and key informants from across British Columbia, Canada. The data were analyzed using thematic analysis comparing, contrasting, and categorizing the data into themes. Results: Factors contributing to positive experiences of Home Sharing (e.g., family involvement) as well as those that constrain and undermine the Home Sharing goals of independence and support are identied (e.g., crisis planning). Conclusions: Home Sharing is the fastest growing residential option in B.C. and signicant concerns exist regarding Home Sharing practices, such as lack of safeguards and standards. Implications for supporting Home Share participants in creating structures and processes that enhance self-advocates experiences of inclusion and citizenship are discussed. Evaluating the quality of individual supported living arrangements for adults with developmental disabilities E. Cocks (e.cocks@curtin.edu.au)*, S.Thoresen & M. Williamson *Centre for Research into Disability and Society, Curtin Health Innovation Research Institute, Curtin University,Western Australia Aim: The Individual Supported Living (ISL) Project developed and piloted an instrument to evaluate quality of supported living arrangements for persons with developmental disabilities. Method: The rst stage of the project reviewed empirical and descriptive literature on supported living for individuals, case studies over eighteen months of six ISL arrangements, surveys of an expert group using a Delphi method, and focus groups to develop an initial framework of nine themes consisting of 28 attributes. The second stage drew on the expert group to identify indicators and evidence for each attribute. The resulting instrument was piloted and further developed by reviewing two sets of ve ISL arrangements using small teams of reviewers that included family members and people with disabilities. Results: An instrument to evaluate the delity of ISL arrangements against eight themes and 21 attributes. Conclusions: The ISL instrument was designed to evaluate the quality elements of the manner in which an ISL arrangement is provided for one person at a time. The Project will now examine the relationship between the delity of ISL arrangements to the quality framework and outcomes for individuals including quality of life, social participation, and costs, and mapping the pathways traversed to reach the arrangement. Addressing the health needs of young homeless people who have an intellectual disability An Australian NGOs response M. Sutherland (mary.sutherland@adelaide.edu.au)* & T. Steeples *School of Population Health and Clinical Practice, University of Adelaide, Australia Aim: Streetlink is a non-government organisation providing a range of primary health services to young people who are homeless. Streetlink staff reported a growing number of homeless young people with an intellectual disability accessing services and presenting with specic health needs. This study examined the nature and impact of these health needs and the implications they may have for Streetlinks service delivery. Method: Individual interviews and semi-structured focus-groups were conducted with Streetlinks medical and counselling staff. Results: The results indicated that, for those homeless young people with an intellectual disability, there was a consistent rate of presentation for assistance with the following services: (1) reproductive health interventions such as managing unplanned pregnancies and for both emergency and long term contraception; (2) wound management and counselling support due to street ghts and domestic violence; (3) medical treatment for sexuallytransmissible illnesses and blood-borne viruses (hepatitis and HIV AIDS) connected to sex work activities, unsafe sex, and intravenous drug-use; and (4) alcohol and other drug counselling for increased substance misuse/abuse. Conclusions: The ndings suggest that health-promotion activities, inter-agency collaboration, and increased support for Streetlink staff (including engaging a specialist practitioner in the area of intellectual disability) could be benecial.

Symposium: Heatlh policy, services and training Emergency room information at a glance:The creation of a 1-page information tool for patients with an ID A. Betzner-Massana (amy.betzner-massana@nbrhc.on.ca)*, K. Beatty, S. Chandler, K. McEntee, P.Turcotte & K. Boss *Canadian Mental Health Association in partnership with the North Bay Regional Health Centre, Ontario, Canada Aim: We describe the process of creating a 1-page information tool for Emergency Room (ER) staff to utilize when individuals with an intellectual disability present to their service. Method: The process included a literature and research regarding emergency room experiences for individuals with an intellectual disability as well as meetings with various clinical teams to provide the most sought-after information. The research team then paired with various agencies to disseminate the information across a vast geographical area. Results: We anticipate presenting the completed tool and educating various interdisciplinary ER teams. Conclusions: Creating a comprehensive 1-page information tool to capture the various functional information to best serve the person with an ID in a crisis situation is a collaborative process with benecial mutual results.
Symposium: Community living and engagement An evaluation of the Scottish ID strategy through the experiences of people with intellectual disabilities C.Trew (chloe.t@scld.co.uk)*, L. Curtice, S. Galbraith, I. Ntamboudi, S. Robertson & M.Thompson *Scottish Consortium for Learning Disability (SCLD), Scotland Aim: To evaluate progress on the Scottish ID strategy by examining the experiences of people with intellectual disabilities (ID) after ten years of implementation. Method: A sample of 50 adults with ID in 4 areas of Scotland, stratied by age, gender, and living situation was drawn from a database of adults with ID. A qualitative interview focused on life experiences including school, home, friends, work and daily activity. The methodology was inclusive with people with intellectual disabilities on the interview team. Results were analysed thematically using framework analysis. Results: Half the interviewees reported that they had a plan which said what they wanted in life and some identied changes that had resulted. Day services, jobs, and college places were valued for providing meaningful activities and opportunities to be with friends. There was variation in the extent to which staff and families enabled people to be more independent. Conclusions: Support to access educational, employment, and social opportunities is essential for people with intellectual disabilities to live as independently as possible. The new intellectual disabilities strategy for Scotland should reect what is important to people in their lives and stress the value of enabling them to have choice and control.
General Hospital Liaison Nursing Services: A mixed-methods impact and outcome study M. Brown (mjbrown_nhs@hotmail.com)* *Edinburgh Napier University, Scotland, UK Aim: There have been signicant concerns about the care and treatment of people with ID in general hospitals with service failures that have contributed to poor care and is some cases avoidable deaths. Establishing Intellectual Disability Liaison Nursing roles has been recommended in government policy to ensure access to clinicians with the knowledge and skills of the needs of people with ID. The aim of the study was to examine the impact and outcomes of four Intellectual Disability Liaison Nursing Services in southeast Scotland on the healthcare experiences of people with ID attending for general hospital care. Method: A mixed-methods design was employed. The quantitative element examined 323 referrals over an 18-month period and qualitative data were collected through individual semi-structured interviews and focus groups with 85 key stakeholders including patients with ID and their carers, nurses, therapists and doctors. Results: The referrals closely matched the known health needs of adults with ID and role impacts on clinical-care outcomes, practice education, and strategic developments. Conclusions: The ID Liaison Nurses have expert knowledge and skills and can make signicant contributions in enabling patient-centred outcomes and the development of effective systems and processes within general hospital settings.
Advancing community living through leadership and self-determination: Michigan Partners for Freedom A. Martin (Angela.Martin@wayne.edu)* & P. Carver *Developmental Disabilities Institute,Wayne State University, Michigan, US Aim: This presentation will highlight the outcomes of Michigan Partners for Freedom (MPF) and its efforts to building statewide demand for selfdetermination. MPF is a grassroots coalition of people with disabilities, family members, organizations and allies collectively are redesigning the service system to be responsive to the principles of self-determination and advancing community living. Method: MPF has delivered local community trainings, developed a network of local leaders, convened a statewide committee and assisted the Michigan Department of Community Health to advance the implementation of self-determination. This multitiered approach has increased demand for self-determination by people with disabilities while enhancing the systems that serve them and their families. Results: MPF has facilitated 52 community trainings, conducted 17 Local Leader training sessions preparing 94 individuals with disabilities to serve as Local Leaders, and convened four Local Leader Summits. MPF has reached 4,440 individuals with disabilities, 825 family members of individuals with disabilities, and 2,506 community members across all project activities. Conclusions: Individuals with disabilities and their families need useful information to implement self-determination. Systems need to deliver person-friendly services and supports. MPF is a coalition addressing the implementation gaps of self-determination collaborating with state, local, and national partners to address these challenges.

Posters: Development of and experiment with a self-determination-based practice model of support M. Caouette (martin.caouette1@uqtr.ca)*,Y. Lachapelle & J. Moreau *Universit du Qubec TroisRivires, Qubec, Canada Aim: In Quebec, the recent evolution of social policies and intervention practices reects a growing concern with regard to self-determination of people with intellectual disabilities. Within this context, self-determination appears to be a philosophy, an approach as well as the primary focus of the intervention. However, integrating a self-determination-based practice is complicated by the persistence of misconceptions about selfdetermination (Lachapelle & Wehmeyer, 2003) and an under-estimation of peoples potential for self-determination (Wehmeyer, 1996). Consequently, the development of a model supporting self-determination-based practices is paving the way. Method: We propose a model supporting self-determination-based practices, which was developed from a review of literature on practical support strategies as well as semi-structured interviews with key informants and service providers. The model is currently undergoing an experiment with two groups of service providers. Results: The proposed model of support is intended to: (1) raise awareness and confront beliefs with actual practices supporting self-determination; (2) promote the adoption of a reective practice; and (3) promote changes in practices of service providers. Conclusions: The current experiment will allow us to draw conclusions about the contribution of the proposed support model to the evolution of the self-determination-based practices of service providers. Increased risk of injury from physical aggression to carers of adults with intellectual disabilities J. Finlayson (Janet.Finlayson@gcu.ac.uk)*, S-A Cooper, A. Jackson, D. Mantry & J. Morrison *Glasgow Caledonian University, Glasgow, Scotland Aim: To determine the incidence, types, and causes of injury experienced by carers (relatives/support workers) of adults with intellectual disabilities (ID) in Scotland over a 12-month period, and to ascertain whether they are at an increased risk of injury from physical aggression due to their caring/support role. Method: Interviews were conducted with 511 adults with ID and their carers (n = 446) in Greater Glasgow. A semi-structured questionnaire was used to collect data on their experiences of injuries, falls, and other accidents over the previous 12 months. This provided a convenience sample of 446 carers, who also provided data on their own experiences of injuries, falls, and other accidents. Carer injury data was compared with general population data in the Scottish Health Survey. Results: Carers experienced a lower incidence of injury when compared with the regional general population (standardised incidence of injury ratio 0.81, CI 0.770.85), yet they were signicantly more likely to experience injury from physical aggression (p = 0.048). This nding was attributable to their caring/support role. Conclusions: Injury from physical aggression is a concern for carers of adults with ID. Risk of actual harm (not just exposure) is an under-researched area which warrants further investigation. An exploration of leadership issues for professionals who work with people with intellectual disabilities (ID) P. Horan (pahoran@tcd.ie)* & M. Brown *School of Nursing and Midwifery, Trinity College Dublin, Ireland Aim: To present the ndings of an international study concerning the importance of leadership among professionals working with people with ID. Method: A mixed-methods approach was utilised in this study. A 98 point e-survey data collection instrument containing a likert-scale and qualitative questions was developed to collect data. Participants were asked to complete an e-survey which they were emailed. The response rate was over 49% (n = 665). Results: The responses received highlight the importance of leadership among professionals working with people with ID. A range of demographic information were collected which included data about gender, academic achievement, age, qualications, and types of leadership roles undertaken by respondents. Almost 26% (n = 136) of respondents held leadership roles, whilst nearly 78% (n = 389) of respondents recognised the importance of leadership roles within the ID sector. Conclusions: This study: (1) shows the ever present importance of leadership among professionals involved the delivery and management of care services for people with ID; (2) illustrates the importance of leadership in the development and maintenance of network groupings concerned with many aspects of caring for people with ID; and (3) demonstrates the potential benets of using e-survey data collection techniques in the ID sector internationally. Posters:
The PBH Support Matrix: Using the Supports Intensity Scale to match individual support needs with managed-care funding in North Carolina A. Misenheimer (andrea.misenheimer@pbhsolutions.org)* & J. Fortune* *PBH Solutions, Kannapolis, North Carolina, US Aim: North Carolina has seen reductions in managed care funding for intellectual disability services. This presentation describes a support matrix for adults and children using the Supports Intensity Scale to build a support matrix of categories of care matched with their services for one region. Establishing the supports matrix provides a way to achieve greater fairness and efciency. This presentation describes how they found better alignment. Method: Individuals with intellectual disabilities are assessed using the Supports Intensity Scale, and are assigned to an appropriate funding category. A model is calculated so that service recipients in each category by service module are assigned an individualized budget according to their support need. Results: The resulting system aligns individual needs with the resources they need. Conclusions: The previous funding method at PBH was only randomly related to the support needs of the children and adults served. The support matrix provides a child model and an adult model that copes with budget reductions from the state while matching the surviving funding with the support needs of the service recipients. Knowledge of fetal alcohol spectrum disorders in the UK general public and professionals R. Mukherjee (leopold.curfs@maastrichtuniversity.nl)*, E. Wray, S. Hollins & L. Curfs *Surrey and Borders Partnership NHS Foundation Trust Bracketts Resource Centre, Oxted, UK Aim: Fetal alcohol spectrum disorder (FASD) is preventable. In order to identify public health strategy needs it was considered important to rst establish what was already known about FASD in the UK. Method: A mixed-method approach using focus groups and questionnaires was used. These qualitative data and data from the questionnaires were analysed. Results: Questionnaires were completed by 1031 people (623 public and 408 professionals). Both the general public and professionals had heard about FASD but had little knowledge in depth beyond that. Both groups found the current health messages in the UK confusing and wanted clear guidelines as well as further education. Conclusions: There is a lack of in depth knowledge about FASD. This has implications about how to deliver public health messages. Targeting a simple message seems to be one of the appropriate approaches. Website support for persons with developmental disabilities Y.Tamekawa (tamechan@ei.tohoku.ac.jp)*, S. Hashimoto, A. Hayashi & A. Kanno *Tohoku University, Japan Aim: The authors have been hosting a website since 1999 dedicated to supporting persons with developmental disabilities. Method: The main purpose of the website is to build the structure for a counseling system for persons with developmental disabilities. The main focus of the website is a series of helpful checklists: a checklist for child development, a checklist of the specic characteristics of developmental disabilities, and a checklist of social adaptabilities. All the checklists are based on the standardized assessments used in Japan. Access to each of the checklists includes a check-in registration. Users of the website are required to ll in an online registration form which includes proles of themselves and/or proles of the individuals targeted in each checklist. Results and Conclusions: In this presentation, the authors describe details of the website, some hosting data (e.g. various numerical data of the users and target persons), and needs analysis based on the access log records (e.g. search words and phrases to access the website).

Posters: Updating the Competence Box:Translating trends into new competencies H.Timmerman (htimmerman@vgn.nl)* & M. van der Rijt *Vereniging Gehandicaptenzorg Nederland, Utrecht, The Netherlands Aim: Eight competence proles have been developed and published for caregivers who support individuals with disabilities. These proles describe the tasks they perform, the critical professional situations they encounter, and the competences they need. In 2009 all competence proles where assembled in a Competence Box. The earliest proles were published in 2005. Since then there have been several developments in the support of people with disabilities. therefore we have evaluated the earliest proles and have translated trends into updated proles. Method: A quick scan performed to evaluate the current proles and visualize trends in the support of people with disabilities determined that the proles need to pay more attention to the use of technology and new media, the support of the client and his network, the aging of clients, and to being a professional. Results: The results of the quick scan and the input of an expert group were translated into updated content of the two basic competence proles and into a special prole pertaining to aging clients. Conclusions: Professional caregivers are essential in offering good quality of care. The updated Competence Box is a further step in working together with the education system in educating caregivers. The relationship between parents service efcacy and childrens needs in families of children with autism spectrum disorder A.Tint (amitint@yorku.ca)*, S. Robinson, M. Slusarczyk, J. Weiss & Y. Lunsky *York University, Ontario, Canada Aim: Research suggests the complex care needs of children with autism spectrum disorder (ASD) are associated with high service utilization, however it remains unknown how childrens needs (i.e., medical and psychiatric conditions, negative life events) may impact the intermediary role of parents service efcacy (i.e., knowledge of the service system, perceived ability to effectively access services). This study sought to understand the relationship between child needs and parent service efcacy. Method: An online survey examining service utilization in individuals with ASD involved 235 parents (93.6% female, M age = 48.53, SD = 7.24). They completed brief measures of service efcacy, child psychiatric conditions, child medical conditions, and negative life events. Data collection is ongoing. Results: Preliminary results suggest that parents of children with psychiatric diagnoses reported signicantly lower service efcacy (t(231) = 2.28, p = .02) than those without psychiatric conditions, while no signicant difference was found for children with medical conditions. There was a signicant difference between service efcacy and frequency of negative life events (F(2,232) = 4.89, p = .01). Further analyses will examine whether child need variables are signicant predictors of service efcacy. Conclusions: Results will be discussed in relation to potential predictive characteristics of service needs in parents of children with ASD. Posters:
Work engagement in disability support workers: Preliminary ndings from a large scale evaluation from Australia M.Vassos (m.vassos@uq.edu.au)*, K. Nankervis,T. Skerry & K. Lante *University of Queensland, Ipswich, Queensland, Australia Aim: Past research highlights that organisational-related factors like role ambiguity, client-related factors like challenging behaviour, and individual-related factors like lack of support are associated with work burnout in disability support workers (DSWs). However, little research is available in the literature that discusses the construct of work engagement (characterised by energy, efcacy and involvement) in DSWs, the positive opposite of work burnout (characterised by exhaustion, cynicism and lack of work efcacy). The aim of this poster is to present preliminary ndings from a large scale evaluation of work engagement in a sample of Australian DSWs with the intention to investigate whether validated predictors of work burnout are also predictors of work engagement. Method: DSWs from across the Australian states of Queensland, Victoria and New South Wales volunteered to complete an online questionnaire that contained psychometric measures of work engagement, work burnout and other various disability work-related factors like challenging behaviour and access to training. Results: Quantitative analyses will be presented to highlight mean levels, and the signicant predictors, of work engagement and burnout in the sample of DSWs. Conclusions: Preliminary implications for future research, policy and disability services stemming from the results will be highlighted and elaborated on.

Symposium: Parent and carer needs Cooperation between parents and care professionals in the support of persons with profound intellectual and multiple disabilities: Do they (dis)agree on the family centeredness of the support provided S. Jansen (s.l.g.jansen@rug.nl)*, A. van der Putten & C.Vlaskamp *Department of Special Needs Education and Child Care, University of Groningen, The Netherlands Aim: The purpose of this study is to determine differences and agreements in what parents and care professionals nd important in the support of persons with profound intellectual and multiple disabilities (PIMD). Method: Participants included 160 parents with a child with PIMD and 300 care professionals (direct support personnel, therapists, medical practitioners etc.). An adapted version of the Measure of Processes of Care (MPOC), both for parents and care professionals, was used to list the opinions about the family centeredness of the support provided. Scales that are included in the questionnaires: enabling and partnership, providing specic information about the child, and coordinated and comprehensive care. There were additional scales for parents respectful and supportive care and for care professionals showing interpersonal sensitivity, treating people respectfully and communicating specic information about the child. Variables that were examined to determine their possible inuence on the scores in both groups of respondents included: (1) person with PIMD age and amount and type of additional disabilities; (2) parents educational level, and (3) care professionals years of practice and type of discipline. Results and Conclusions: Results of this study will be presented at the conference. The opinion of parents/legal guardians of a person with PIMD about the quality of support in residential care J. Luijkx (j.luijkx@rug.nl)*, A. ten Brug & C.Vlaskamp *Department of Special Needs Education and Child Care, University of Groningen, The Netherlands Aim: This study examined the views of parents/legal guardians on the quality of support provided to clients with PIMD living in a residential care facility. Parents/legal guardians are seen as part of the care system and able to act as a proxy in reviewing the care for the person with PIMD. This emphasizes the importance of acquiring more specic and transparent views of parents/legal guardians about the quality of support. Method: A questionnaire was developed in close cooperation with parents. This questionnaire was used to identify the satisfaction and the possible contributing factors to the satisfaction of parents/legal guardians (n = 240) of a person with PIMD. Results: Parents/legal guardians of persons with PIMD rated the overall quality of support on average with a grade of 7.4 (SD: 1.2). Small but signicant differences were found between different topics. Conclusions: Parents/legal guardians were mainly satised; a minority of 8.8% gave an unsatisfactory grade. More conclusions on the views of parents/legal guardians on the quality of support and the contributing factors to the satisfaction of parents/legal guardians will be presented. Living as an adult with PIMD The right place to live: necessarily in a family? E. Weber (e.weber@eh-darmstadt.de)* *Evangelische Fachhochschule Darmstadt Universitiy of Applied Sciences, Darmstadt, Germany Aim: Many adults with PIMD still live in their families due to health or residential services not being prepared for these people and families hesitating sometimes until no longer possible to give away their children who have become adults. This study tries to understand that fact, making suggestions of alternative and community-based forms of living for adults with PIMD. Method: Focusing on adults with PIMD in Germany, a literature-based analysis was done concerning the current living conditions of adults with PIMD in families. Then, parents with their grown-up children with PIMD were asked about their needs, wishes and realities. Results: There is a large gap between the requirements of the independent-living movement and the current living conditions of adults with PIMD. In addition, the needs and wishes of parents may differ from the requirements of the independent-living movement. In general, persons with PIMD do not prot from the international developments concerning the inclusion of people with disabilities. Conclusions: The participation of adults with PIMD is difcult. Service providers are not sufciently prepared to the needs and wishes of parents. Programmes of awareness raising and sensitization are necessary. Services must be adapted to the needs of adults with PIMD.
Profound Intellectual and Multiple Disabilites
Symposium: Methodological challenges in building evidence-based practice for persons with PIMD Methodological challenges in building evidence based interventions for persons with profound intellectual and multiple disabilities J. Goldbart (j.goldbart@mmu.ac.uk)*, B. Maes & C.Vlaskamp *Manchester Metropolitan University, Research Institute for Health and Social Change, England Practitioners are challenged to implement evidence-based interventions. Researchers are challenged to deliver scientic evidence for interventions that are useful in practice. Building knowledge and evidence about interventions for persons with PIMD seems to be even more challenging. On the one hand this can be explained by the characteristics of persons with PIMD themselves: their pre-symbolic communication, the heterogeneity of their (dis)abilities etc. On the other hand many published studies suffer from methodological limitations, such as small participant numbers and lack of standardized methods and measures. Finally theoretical frameworks about development, learning and life quality of persons with PIMD are lacking. In this symposium we want to explore how some methodological designs can be applied in the target group of persons with PIMD to build knowledge and evidence about interventions. We will discuss amongst others the possibilities and pitfalls of meta-analysis of small group studies, mixed methods research, single subject (n = 1) experimental studies such as multiple baseline designs, and theory driven research about changes.

Symposium: Social interaction and participation Social contacts of people with profound intellectual and multiple disabilities A. Kamstra (aafke.kamstra@rug.nl)*, A. van der Putten & C.Vlaskamp *Department of Special Needs Education and Child Care, University of Groningen,The Netherlands Aim: Little is known about the social contacts (SC) of people with profound intellectual and multiple disabilities (PIMD). In general,factors such as age, health problems, previous living scheme and number of years living in a facility are related to the structure and function of SC in people with intellectual disabilities. This research focuses on people with PIMD and concerns the number, nature and frequency of SC and relation with personal and contextual characteristics. Method: The participants were 205 persons with PIMD, living in a Dutch residential facility. Data were collected through the use of a questionnaire. Descriptive analyses were used. Results: On average, a person with PIMD has 5.1 non-professional contact persons (NPCs) (range: 026, SD = 4.2), 72.7% had 17 NPCs a year. 79.4% of these contact persons are a family member. Concerning frequency: 58.2% of the 1051 NPCs had once a month or less contact per year. There was a negative relation between age of the person with PIMD, communication abilities, years living in the current and previous living scheme, and the number and frequency of the SC. Conclusions: The social network of persons with PIMD consists mainly of family members and is related to personal and contextual characteristics. Social peer interactions between persons with profound intellectual and multiple disabilities S. Nijs (sara.nijs@ppw.kuleuven.be)* & B. Maes *Katholieke Universiteit Leuven, Belgium Aim: Peer social interactions may positively inuence developmental and quality of life outcomes. Research has mostly focused on social interactions between persons with profound intellectual and multiple disabilities (PIMD) and their caregivers or parents. This study focused on peer interactions between persons with PIMD. Method: Eight small groups with 3 or 4 children with PIMD, aged between 3 and 18 years, were video-recorded during group activities initiated by a direct support worker. Peer-oriented behaviours of the children and social scaffolding behaviours of the direct support worker were coded continuously, making use of an observation scheme. Results: We observed few, but several forms of peeroriented behaviours of children with PIMD during the group activities. Sometimes these behaviours were not seen and responded to by the direct support worker; sometimes they even were inhibited by the initiatives of the direct support worker. We will discuss several examples of positive social scaffolding behaviours of the direct support worker. Conclusions: This explorative study yielded a lot of perspectives and discussion for future research on social interactions between persons with PIMD, the inuencing factors, and the way they can be supported.
Symposium: Social interaction and participation (continued) Public perceptions of profound disability K. deZonia (krystid@teriinc.org)* *University of California, San Diegoand TERI, US Aim: There are few if any resources that researchers can access in order to get a sense of the general community perspective regarding individuals with profound intellectual disability. The aim of this study is to ameliorate this. This presentation is based on a larger study, part of which examined community perspectives of an individual with profound and multiple disabilities that were posted in response to a newspaper article about the individual and his family. Methods: The researcher used public comment on the article as a source of data; the analysis involved coding responses and categorizing perspectives so that conclusions about public perceptions of profound disability could be drawn. Results and conclusions: The resulting data and conclusions provide information regarding the terms the general public uses to describe a person with profound disability; their expectations for these individuals; their thoughts about educating those with PMID; problems they associate with those who have PMID; their proposed solutions to these perceived problems; and their thoughts about who is ultimately responsible for the needs of those with PMID. Effects of a video feedback intervention on the quality of communication between people with multiple disabilities and their social partners S. Damen (s.damen@rug.nl)* *University of Groningen,The Netherlands Aim: The communication between persons with multiple disabilities and their social partners is often characterized by a high prevalence of misunderstandings, a lack of personal togetherness and mutuality, and limited variation in communicative functions and topics. The combination of lack of sensitivity of social partners to the communicative behaviors of persons with multiple disabilities and a lack of clarity and readability of these behaviors are believed to be important components in low quality communication. Methods: An intervention program was developed based on theories of development of intersubjectivity (Trevarthen, 2001; Stern, 1985), the intervention model Contact (Janssen et al, 2003) and the work of the DBI ECN working group (University of Groningen). The program aims to enhance the quality of communication between people with multiple disabilities and their communication partners and uses video feedback training. Results and conclusions: We will present results of the effectiveness of our intervention model on the quality of communication of 8 participants with intellectual disability and visual and hearing impairments and 40 social partners. We will discuss the differences of the quality communication intervention and other types of interventions developed for interaction and communication and the limitations of the research we conducted.

Symposium: Motor activation I Motor assessment in the support of persons with (profound) intellectual disabilities: What, how, why and when in practice? A. van der Putten (a.a.j.van.der.putten@rug.nl)*, S. Houwen & C.Vlaskamp *Department of Special Needs Education and Child Care, University of Groningen, The Netherlands Aim: Persons with profound intellectual and multiple disabilities (PIMD) are at risk to be physically inactive. To ne tune the level of support to the needs and abilities of the individual, regular assessment of these motor abilities is necessary as part of the planned support. However, data regarding these assessment procedures in persons with PIMD is currently lacking. The aim of this study is to analyse the use of assessment instruments concerning motor functioning in persons with PIMD in daily practice by care professionals. We analysed which instruments were used in daily practice, the rationale for using them, and how often they were used. Furthermore, we analysed these assessment procedures from a theoretical point of view. Method: In total, more than 30 care professionals (physical and occupational therapists and special educators focusing on movement) who work in the support of persons with PIMD within four Dutch residential facilities participated. Data, per individual, were gathered by means of a structured questionnaire developed for the study. The instruments used will be analysed against a theoretical background and applicability for use in support of persons with PIMD. Results and Conclusions: To be presented at the congress. Physical and occupational therapists perceptions of motor control, motor development, and motor learning in the support of people with intellectual disabilities S. Houwen (s.houwen@rug.nl)*, A. van der Putten & C.Vlaskamp *Department of Special Needs Education and Child Care, University of Groningen, The Netherlands Aim: As decits in motor functioning are mentioned as a characteristic of people with intellectual disabilities (ID), especially for people with profound intellectual and multiple disabilities, the need for support and therapy concerning motor functioning is clear. To select appropriate movement-oriented interventions and achieve desired outcomes, physical and occupational therapists are expected to be knowledgeable in theories of motor control, development, and learning. The aims of the present study were to identify factors therapists perceive are important in the motor functioning in people with ID, their current beliefs about best practices for people with ID, and whether these beliefs reect integration of recent theories of motor control, development, and learning. Method: In total, 30 care professionals (physical and occupational therapists) who work in the support of people with ID in four Dutch residential facilities participated. Data were gathered by means of a structured questionnaire that was developed for the current study. Results and Conclusions: Results and conclusions will be presented at the congress. Sensorimotor assessment as a means to observe individuals with profound intellectual and multiple disabilities G. Petitpierre (Genevieve.Petitpierre@unige.ch)* *Faculte de Psychologie et des Sciences de lEducation, Universit de Genve, Switzerland Aim: The tools for assessing the cognitive, sensorimotor, communicative and emotional skills of people with profound intellectual and multiple disabilities are still lamentably few in number (Vlaskamp, 2005). Scales and tests can rarely be used for measuring purposes due to the extremely varied nature of this population which dees the constitution of the homogenous groups required for statistical validation (Frhlich, 2012). Method: Sensorimotor assessment, developed by Andr Bullinger who specialises in sensorimotor issues, is a clinical observation tool which is highly valued in French-speaking educational and therapeutic circles. It is used to observe tonico-emotional regulation and overall motor control functions, elementary sensory functions, the instrumental skills of sensorimotor systems, sensorimotor coordination and motor planning, body image, the control of spatial relations, and operative effectiveness of the individuals concerned (Bullinger, 1996, 2002 & 2004). Results and Conclusions: Although it is not standardised, it is however based on a series of situations drawn from test items, trials described in the literature, and simulation exercises used in basic research. This presentation is intended to present the theoretical framework, set out the guiding principles of sensorimotor assessment and to show ways it can be used to observe people with profound intellectual and multiple disabilities.
Symposium: Motor activation II Powered-assisted exercises for people with profound intellectual and multiple disabilities: Effects on functional disabilities, alertness and quality of life A. van der Putten (a.a.j.van.der.putten@rug.nl)*, A. Waninge, C.Vlaskamp, C. van der Schans *Department of Special Needs Education and Child Care, University of Groningen, The Netherlands Aim: Persons with a combination of profound intellectual and motor disabilities (PIMD) are at risk for being physically inactive. In practice, care professionals search for possibilities to activate those severely disabled persons. One of the interventions is powered assisted exercises exercising with use of a machine that automatically moves selected levels and handles at pre-determined speeds through a pre-determined range of motion. Individuals attempt to accelerate the movement by pulling on the handles in the direction the machine is moving. We analysed the effects of these powered-assisted exercises on alertness, functional abilities (explorative behavior), and quality of life in persons with PIMD. Method: A randomized control trial was used. A total of 35 people with PIMD participated. They were randomly assigned into an experimental group (n = 18) and a control group (n = 17). The experimental group received powered-assisted exercises three times a week for 20 minutes during ve months. The control group received care as usual. Pre-, intermediate and post-measurements of alertness (with use of the Alertness Observation List), functional abilities (with the Behavioural Appraisal Scales) and QoL (QoL-PIMD) were conducted. Results and Conclusions: The results and conclusions will be presented during the Congress. Powered assisted exercises for people with PIMD: Exploration of effects on physiological measures A. Waninge (alywaninge@visio.org)*, A. van der Putten, C.Vlaskamp & C. van der Schans *Hanze University of Applied Sciences, Groningen, The Netherlands Aim: As persons with profound intellectual and multiple disabilities (PIMD) risk low levels of physical activity and the associated negative effects on health, the purpose of the study was to analyze the effectiveness of powered assisted exercises on physiological measures in persons with PIMD. Method: 35 Participants were included. 18 Participants of the experimental group received powered assisted exercises three times a week for 20 minutes during ve months, while 17 participants of control group received care as usual. We have performed pre-, intermediate and postmeasurements of body mass index (BMI), waist circumference, defecation, and muscle tone. Measurements of heart rate and saturation were conducted during the exercises. Effects were analysed with independent T-test, paired T-test, Wilcoxon signed rank test, Mann Whitney U test, and multilevel analysis. Results: Effects were seen during the exercises on saturation, while pre- and post-measurements showed effects on body composition, defecation and muscle tone. Conclusions: Preliminary results show promising effects of powered assisted exercises on physiological measures in persons with PIMD. Movement oriented support in daily practice of children and adults with intellectual disabilities A. van der Putten (a.a.j.van.der.putten@rug.nl)*, S. Houwen & C.Vlaskamp *Department of Special Needs Education and Child Care, University of Groningen, The Netherlands Aim: People with intellectual disabilities are at risk to be physically (motor) inactive, but those with a combination of profound intellectual and motor disabilities are especially likely to run this risk. Although care professionals such as physical therapists, occupational therapists, and special educators focusing on movement are part of the professional staff, it is unknown to what extent they use movement-oriented interventions. The aim of the study is to analyse if they do, and if so, what purpose and rationale guide the use of movement-oriented interventions in daily support. Furthermore, if they use movement-oriented interventions, we want to establish if they implement these interventions in the way this is theoretically intended. Method: In total, 30 care professionals (physical and occupational therapists and special educators focusing on movement) who work in the support of persons with PIMD in four Dutch residential facilities participated. Data, per individual, were gathered by means of a structured questionnaire that was developed for the current study. Used interventions will be analysed by means of theoretical background and applicability for the use in the support of persons with PIMD. Results and Conclusions: The results and conclusions will be presented at the congress.

Symposium: Participation in activities I Alertness and reaction time of persons with profound intellectual and multiple disabilities while reading multi-sensory stories A. ten Brug (a.ten.brug@rug.nl)*, V. S. Munde, A. A. J. van der Putten & C.Vlaskamp *Department of Special Needs Education and Child Care, University of Groningen, The Netherlands Aim: Multi-sensory storytelling (MSST) books are personalized stories for persons with profound intellectual and multiple disabilities (PIMD). In MSST, sensory stimuli are used in addition to a short verbal text to optimize alertness and the engagement of the person with PIMD. Furthermore, white boards, on which the stimuli are presented, are used to increase the focus on the stimulus and to reduce reaction time. The aim of this study is to determine if the reaction of the listener in terms of alertness is related to the use white boards and the active offering of stimuli. Method: In total, ve people with PIMD and their direct support persons participated. One recording of a storytelling-session from each pair was analyzed using time-sequential analysis. Independent variables used were (a) use of white boards, (b) active or passive offering of a stimulus. As a dependent variable the level alertness of the person with PIMD was used (active alert, passive alert, inactive/withdrawn, sleeping/drowsy). Results and Conclusions: Results and conclusions of the time-sequential analysis concerning the elements of multi-sensory storytelling, which contribute to optimizing alertness and reducing the reaction time of persons with PIMD, will be presented at the conference. The impact of StorysharingTM on the communication skills of children with complex needs T. Rogers (t.j.rogers2@newcastle.ac.uk)*, C. Letts & N. Grove *University of Newcastle, England, UK Aim: The aim of the project is to formally evaluate the changes in communication skills and social participation for 6 children with complex needs/severe and profound disabilities, that result from an intervention using StorysharingTM. This approach has been designed and rened over the last 10 years and its evaluation is timely due to the paucity of therapy techniques that result in changes in participation in this population. Method: StorysharingTM consists of coaching teachers and carers in how to best support children with PMID to tell personal stories. Videos of the children will be taken at various timepoints along the therapy pathway. Results: Changes in communication skills over time will be documented, as measured on the Communication Matrix (Rowland, 2010) and through narrative proling. Interviews with parents and teachers will be used to analyse changes in views of the children and their participation. Conclusions: The evaluation will involve a critical appraisal not only of the results but also the techniques applicability and feasibility in everyday practice. Is this needed or is it too critical and unfounded? Exploratory analysis on participation of adults with severe motor and intellectual disabilities in daytime activities S. Hasegawa (sakurako@inst-hsc.jp)*, K. Miura,T. Komori,T.Takezawa & M. Hosokawa *Institute for Developmental Research, Aichi Human Service Center, Japan Aim: Community-dwelling adults aged 40 or older with severe motor and intellectual disabilities (SMID) in Aichi Prefecture generally spend much of their day at home, though younger adults in the same population participate in daytime activities. From a viewpoint of adult development, it is preferable for them to participate in daytime activities. Method: We conducted a logistic-regression analysis to explore factors that prevent them from participating in daytime activities, using 323 data collected in the previous survey on the daily living and needs of persons with SMID who live in their community. Almost all questionnaires were completed by their families. Results: The nal model consisted of nine variables. Four variables were indicators of health status of the person with SMID or their family caregiver. The other ve variables were answers to multiple-choice questions about their wishes for residential settings or daytime activities. Each of the latter variables could be interpreted as reecting (1) anxiety about the quality of nursing care, (2) difculty of decision making related to poor accessibility to consultation services, or (3) weak motivation for ones development. Conclusions: Results suggest that interventions intended to reduce these factors and the inuences are effective in promoting the participation.
Symposium: Participation in activities II People with profound and multiple intellectual disabilities using symbols to control a computer: Exploration of user engagement and supporter facilitation K. Bunning (k.bunning@uea.ac.uk)*, G. Gwiatkowska & N. Weldin *University of East Anglia, England, UK Aim: Computer usage is a feature of everyday life. Access is a problem for many users with intellectual disability. Action-research was conducted to develop and explore the potential of specially adapted, computer-readable symbols for choosing and accessing media on a computer. Method: Five people with profound and multiple intellectual disabilities, aged 1528 years, took part. The symbols were introduced during computer-based activities across four trials at monthly intervals. Each trial was videorecorded and sampled according to established protocol. The vocal, nonvocal, and computer-related aspects of the footage were transcribed into standard orthography. A framework of activity moves based on applied linguistics analysis was used to assess user and supporter engagement. Results: All the users showed some level of basic engagement with the adapted symbols, with certain individuals demonstrating functional usage. Attention levels appeared to increase as the trials progressed. Supporter contributions comprised signicant levels of guidance and modelling with the symbols. Conclusions: Tangible symbols to access media on a computer provide some real possibilities for addressing access challenges experienced by this population. Candidacy and the mediating role of supporters require consideration. The innovation of a drinking cup for persons with profound and multiple intellectual disability S. Anisuzzaman-van Hasselt (anisuzzaman99@hotmail.com)* & M. Boshuisen *s Heeren Loo Advisium, The Netherlands Aim: Can a specially designed drinking cup increase the independence of persons with PMID, and decrease the risk of dysphagia? Method: A cup was designed meeting the following demands (as distinguished by systematic observation and literature review): dosage of a drink to 20 ml at most, easy handling, bended edge for optimal lip-closure, optimal stability and visibility. Participants were 10 adults with PMID, with specic needs in drinking, and a history of dysphagia. They were followed for 8 weeks. The increase of independence and reduction of dysphagia was scored by professionals, using an observationlist for dependency (based on Christiansen, 2000) and the Dysphagia Disorder Survey (Sheppard, 2002). Results: The results indicate a signicant increase in independence in 4 of 10 participants: two participants went from partly dependent to drinking independently, and two from totally dependent to partly dependent. A slight decrease of dysphagia was seen in 4 participants from a mean of 3 incidents to 1 or less, while using the cup. Conclusions: The rst and promising results of this pilot study warrant further and larger scale research of the application of the Drinking Cup Opmaat in this difcult population. Gathering knowledge by telling a story A case study A. ten Brug (a.ten.brug@rug.nl)*, A. van der Putten & C.Vlaskamp *Department of Special Needs Education and Child Care University of Groningen, The Netherlands Aim: Research shows that direct support staff (DSS) of persons with profound intellectual and multiple disabilities (PIMD) often lack knowledge about their clients sensory and contextual preferences and abilities. The aim of this study is to describe how knowledge was gathered by using multi-sensory storytelling (MSST), and to examine if this newly-acquired knowledge is put into practice. Method: Three dyads of staff-members and children with PIMD were included in the study. A MSST-book was read twenty times in a period of ten weeks. Before reading, and after the 10th and 20th session, the storytellers lled in a questionnaire concerning their childs sensory and contextual abilities and preferences. Differences between these three measurements were documented and described. After the 20th session, DSPs were given the opportunity to make changes in their MSST-book based on the new knowledge. Results: Although knowledge was generated about both sensory and contextual preferences and abilities, most new knowledge concerned the senses. Of all the knowledge generated, 11% was processed in the MSST-book. Conclusions: MSST shows to be a suitable activity for DSS to generate more knowledge about clients with PIMD.

Symposium: Bereavement, loss and death Palliative care for persons with profound intellectual and multiple disabilities B. Maes (bea.maes@ped.kuleuven.be)* & J. De Maeyer *Katholieke Universiteit Leuven, Belgium Aim: Persons with profound intellectual and multiple disabilities (PIMD) live longer and are vulnerable for life threatening conditions. This makes palliative care an important aspect of support in this group. Method: Fifteen (15) situations were selected in which the person with PIMD had recently died and had experienced a period of palliative care. We carried -*out semi-structured interviews (n = 49) with parents and staff members (direct support staff, coordinating staff and medical staff) about their experiences with regard to the palliative care of the person with PIMD. Their positive and negative experiences, their needs as well as problems and possible solutions, have been examined. Results: We will discuss the experiences of the respondents with regard to the start of palliative care, ethical issues and the organization and contents of palliative care. We will also report on the needs of parents and staff members during the period of palliative care and afterwards when they are confronted with the death of the person. Conclusions: Based on these results a framework has been established to support services for persons with PIMD to improve palliative care. End-of-life decisions for people with intellectual disabilities, from the perspective of patient representatives A. Wagemans (awagemans@maasveld.koraalgroep.nl)*, H. van Schrojenstein Lantman-de Valk, I. Proot, I.Tuffrey-Wijne, J. Metsemakers & L. Curfs *Maasveld, Koraalgroep, Maastricht, The Netherlands Aim: The aim of this study was to clarify the process of decision-making for medical end-of-life decisions regarding people with intellectual disabilities, from the perspective of patient representatives. Method: This qualitative study involved ten semi-structured interviews with patient representatives held after the deaths of patients with intellectual disabilities in the Netherlands. The interviews were transcribed verbatim and analyzed using the grounded theory procedures. Results: The patient representatives were passionate about deciding for their loved ones and they felt highly responsible for the outcomes. The patient representatives had clear opinions about quality of life and prevention from suffering. They wanted the doctors to give them support in the decision-making process and to be aware of the values of a patient and their family, and their shared life story. There was a lack of information about the legal position of the patient representatives and the doctors in the process of end-of-life decisions. Conclusions: From the perspective of the patient representatives, the process of endof-life decisions can be improved by ensuring clear roles and an explicit description of the tasks and responsibilities of all participants. Erfurt project on children with anencephaly H. Goll (harald.goll@uni-erfurt.de)* *The University of Erfurt, Germany Aim: Anencephaly means the absence of the cerebrum. It is the most frequent developmental malformation of the brain. The children survive only for a few hours or days at the most. An increasing number of parents are deciding to continue the pregnancy. The Erfurt project studies the situation of the children and their parents. Method: Eight international conferences on the situation of children with anencephaly and their parents have been held at the University of Erfurt. An interdisciplinary anencephaly network with participants from the elds of medicine, philosophy, psychology and law emerged from this activities. Methodologially, three elements are essential for such a network: (1) access through cultural studies, (2) interdisciplinary team structure, and (3) integration of parents as experts. Results: Carrying to term is a trend observable in the international context. Parents consciously use the time to experience togetherness with their unborn child. Children with anencephaly have more competencies than suggested in literature. Conclusions: Profound brain impairment and very limited lifespan lead to anthropological and ethical questions of personhood as well as questions on awareness, perception and emotion. The development of adequate programs to serve parents and children is needed.
Symposium: Bereavement, loss and death (continued) Mortality rate of people with profound intellectual and multiple disability (PIMD) in Japan T. Miyanomae (miyanomt@skyoto.hosp.go.jp)* *National Hospital Organization(NHO) Minami Kyoto Hospital, Japan Aim: To clarify the mortality rate and the background of people with PIMD in the wards of National Hospital Organization (NHO). Method: About seven thousand and four hundred people (7400) with PIMD are admitted in 73 NHO hospitals. These hospitals are connected via internet with the database system called SMID (severe motor and intellectual disability) system. Data in 2009 and 2010 were collected and analyzed concerning background details regarding the deaths of persons with PIMD. Results: Two hundred and twenty-six people with PIMD died in the years 20092010; the mortality rate is 4.0% (226/5693, 2.0% a year). The rate is 13.8% (36/261) under 10 years old, 4.6% (20/438) between 1019 years old, 4.5% (31/691) between 2029 years old, and 3.2% (139/4303) over 30 years old respectively. In the PIMD medical care-dependent group, the mortality rate is 7.2% (96/1336) which is 2.4 times more than PIMD group (3.0%, 130/4357). Conclusions: Mortality rate of people with PIMD in NHO hospitals is 2.0% a year. High mortality rates for young children with PMID and people with PIMD who are medical care-dependent is different from the rest.
Can a Condential Inquiry into a persons death make a difference? P. Heslop (pauline.heslop@bristol.ac.uk)* & A. Marriott *Norah Fry Research Centre, University of Bristol, England, UK Aim: The Condential Inquiry (CI) into the deaths of people with learning disabilities in the U.K. aims to improve the health and well-being of people with intellectual disabilities. Method: There are a number of tensions involved in conducting a Condential Inquiry into the deaths of people, and this paper highlights some that the CI team and other Condential Inquiries have faced to-date. Results: Condential Inquiries in general have to balance the need for condentiality against the duty of care. We have found that learning and recommendations are more effective if they are owned and taken forward by those to whom they apply, although this may be difcult to achieve. There is also a need for learning to come from a body of evidence rather than an individual case, and the mechanisms for this may not always be clear. Finally, we need to consider the impact of Condential Inquiries and how they can lead to positive change. Conclusions: The impact of Condential Inquiries can be apparent at different levels, from national to local and from individual to collective. Whilst there may be many challenges in conducting a Condential Inquiry, the value of this approach and potential impact can outweigh any concerns.

Symposium:The signicance of physiological measures of emotion and alertness The tell-tale: What does physiology reveal about emotions of people with severe and profound ID? P.Vos (pieter.vos@ppw.kuleuven.be)*, P. De Cock, K. Petry, W.Van Den Noortgate & B. Maes *Katholieke Universiteit Leuven, Belgium Aim: Identifying emotions in people with severe and profound ID is a difcult challenge. As it is accepted that emotions consist of language, behaviour and physiology, in this article we wanted to investigate hypotheses derived from the motivational model of Bradley and Lang about the relation between heart rate (HR) and the valence of emotions, and between HR, skin conductance (SC) and skin temperature (ST) and behavioural expressions of emotions of people with severe and profound ID. Method: Twenty-seven (27) particpants were presented with four staff-selected negative and four staff-selected positive stimuli. The situations were videotaped and their HR, SC and ST was measured. Each behaviour of the participant was coded using the observational method developed by Petry & Maes (2006). Results: As hypothesized, we found a lower HR when participants were presented with negative stimuli than when they were presented with positive stimuli in the rst six seconds of stimuli presentation. Their ST was higher for the expression of low intensity negative emotions compared to the expression of low intensity positive emotions. Conclusions: The results suggest that, as with people without disability, HR and ST can give information about the emotions of persons with severe and profound ID. Using physiology to validate behavioural observations of the emotions of persons with severe and profound ID P.Vos (pieter.vos@ppw.kuleuven.be)*, P. De Cock, K. Petry, W.Van Den Noortgate & Bea Maes *Katholieke Universiteit Leuven, Belgium Aim: Although behavioural observations are the most-used source of information about the emotions of people with severe and profound ID, until now they have only been validated using inter-observer agreements and by increasing them through interventions. As physiology can give information about the emotions of people, in this study we wanted to validate the behavioural observations of emotions by investigating if we could nd the same relationship between respiration and heart rate variability (HRV) and the behavioural observations of emotions as the model of Bradley and Lang predicts for people without disabilities. Method: Twenty-seven (27) participants were presented with four staffselected negative and four staff-selected positive stimuli. During the presentation the participants were videotaped and their respiration and HRV measured. Each behaviour of the participant was coded using the observational method developed by Petry & Maes (2006). Results: We found the hypothesized higher percentage rib cage contribution to the total tidal volume, a marginal lower mean inspiratory ow, and a lower heart rate variability when the expressed emotions became more positive. Conclusions: These ndings give a validation for the inference of emotions from behavioural observations of people with severe and profound intellectual disabilities. Physiological measurements and alertness observations: An exploratory case study of three individuals with PIMD V. Solveig Munde (v.s.munde@rug.nl)* *University of Groningen, The Netherlands Aim: Because observation yield the possibility to take into account the special characteristics of individuals with profound intellectual and multiple disabilities (PIMD), observation has some clear advantages above other methods when investigating individuals in the target group. At the same time, a number of disadvantages are related to observation as well. Therefore, the aim of the present study was to determine whether physiological measurements can be used to complement and validate alertness observations. Method: Measurements of ve physiological parameters were compared to alertness observations based on videotapes of three individuals with PIMD. Results: The results show similar patterns in alertness observations and physiological measurements. Conclusions: Comparing alertness observations to physiological measurements, our rst results are broadly in line with previous studies involving nonclinical individuals. Consequently, physiological measurements might be useful to complement and validate alertness observations in individuals with PIMD. Future studies are needed to address the limitations of the present study. In addition, further exploration of the eld of physiological measurements in research concerning individuals with PIMD is recommended.
Symposium: Auditory and visual perception Measuring the auditory environment of people with profound intellectual and visual disabilities C.Vlaskamp (c.vlaskamp@rug.nl)* & T. C. Andringa *Department of Special Needs Education and Child Care, University of Groningen, The Netherlands Aim: The purpose of this study is to improve the auditory environment of people with people with profound intellectual and visual disabilities. We aim to improve their understanding of their acoustic environment, to help them feel safer and to improve perceived control. This must lead to lower arousal. Method: Forty clients were included in these (repeated) measurements, in four different settings and in several different situations. Audio and video recordings of the situations were made and assessed. The conceptual model of perceived affective qualities of outdoor soundscapes (Axelsson, 2007) is used to analyse the acoustic environment and acoustical properties of people living in residential facilities and to couple that to the behavioural state of the client. Results and Conclusions: Preliminary analyses show that two main dimensions pleasantness and eventfulness correspond to common descriptors of indoor sonic environments (like quiet, interesting, or chaotic). These can be used to formalize the sonic environment of clients and offers options towards improving it. Full results will be presented. Perception of persons with profound intellectual and multiple disabilities M. Roemer (miriam.roemer@esdege-reigersdaal.nl)*, F.Velthausz & M. Roemer *Esdege-Reigerdaal, Amsterdam, The Netherlands Aim: The goal is insight into perception by persons with PIMD. Method: The ethological behavioural observation method was used. Behaviour was recorded on video. Recorded behaviour was observed and encoded on the basis of an ethogram created for this. Study data were processed through frequency and duration analyses and sequential analyses. Results: Of all 4000 behaviours observed, 55% were recognizable as perception behaviour, of which there were 98 different types. Perception can be derived specically from eyes and head behaviour, and from the behaviour of face and of hands/ arms. As to sensorial use, it was found that 38% of the perception behaviour was looking, 32% was listening, and 25% was touching. Simultaneous use of senses also occurred. Different perception patterns were found which inform about the way of perception: (1) being fully open to stimuli versus a strong focus on own activity, (2) perception behaviour as stress control, and (3) awareness patterns in which aural stimuli are dominant and the importance of sounds also became visible. Conclusions: The results are strongly individual-bound.This study into perception behaviour in persons with PIMD gives information on how they perceive, and consequently how they experience their surroundings. Intervention for children with cerebral visual impairment M. Steendam (mariekesteendam@visio.org)*, G. Dutton & A. Hall Lueck *Royal Dutch Visio, The Netherlands Aim: Presenting tools for intervention for children with cerebral visual impairment and PMID. Method: Assessment is the basis of intervention. Cerebral Visual Impairment (CVI) needs an assessment that is mainly based on structured observation by a multidisciplinary team. Intervention is based on a visual prole, the outcome of the assessment, and compiled to measure for each child. Intervention consists of psycho-education, visual training, and utilizing compensation strategies all combined. Visual training is aimed at the visual behaviour and visual skills of each child. Results: Practical tools to be used in assessment and intervention are presented, illustrated by a case study with video-images. Conclusions: Recognition of CVI in children with PMID is very important to improve their quality of life. Specialized staff and daily carers must work together to give the child the right intervention to improve their visual functioning optimally. The presentation will be based on the chapter: Intervention Methods to Promote Visual Skills and Behaviours for Children with Functional Needs in the book Impairment of Vision Due to Disorders of the Visual Brain in Childhood: A Practical Approach. This book will published mid 2012 by AFB press, edited by Amanda Hall Lueck and Gordon Dutton.

Symposium: Communication and interaction I Selection of communication intervention in PIMD: Speech & language therapists rationales J. Goldbart (j.goldbart@mmu.ac.uk)*, D. Chadwick & S. Buell *Manchester Metropolitan University, England Aim: People with profound intellectual and multiple disabilities (PIMD) have communication impairments as one dening characteristic. A range of communication intervention approaches are described in research and professional literature, with varying levels of evidential support. This project aimed to explore UK speech and language therapists (SLTs) decision making regarding communication interventions for people with PIMD, in terms of the approaches used and the factors informing their decisions to use specic interventions. Method: A questionnaire on communication assessment and intervention for people with PIMD was sent to SLTs to elicit information on the settings they worked in, the approaches they used, their rationales for their choices, their use of published evidence to inform decision making, and barriers they experienced to adopting evidencebased practice. Results: A wide range of rationales were cited by SLTs, including reference to typical development, organisational practice, and the characteristics of the learner. Few references were made to research or evidence-based practice. Conclusions: Research evidence is not routinely used by SLTs to inform intervention which can lead to diverse practice, and potential problems in a context where the commissioning of services is increasingly requiring practice to be evidence-based. Implications for research and practice will be discussed. Attentional processes in interactions between people with profound intellectual and multiple disabilities and direct support staff H. Neerinckx (heleen.neerinckx@ppw.kuleuven.be)*, I. Hostyn & B. Maes *Katholieke Universiteit Leuven, Belgium Aim: Few studies examine joint attention in interactions with persons with profound intellectual and multiple disabilities (PIMD), although it is an important component of high quality interaction. The purpose of this study is to describe attention-directing behaviours from persons with PIMD and their direct support staff as well as attention episodes resulting from their interaction and to understand how these variables relate to each other. Method: Video observations of 17 staff-client dyads were coded using partial interval recording. Results: Results showed considerable variation across persons and dyads. In general, persons with PIMD are directing the attention of their staff members at low rates. The staff members are frequently directing the attention of the clients towards a topic of interest but not often through the tactile modality. Within the staff-client dyad, there is not much joint attention but shared attention is frequently occurring. Shared attention and joint attention are strongly correlating. Conclusions: This study presents directions for future research and implications for practice on how shared and joined attention can be improved in interactions between clients with PIMD and direct support staff. Affective attunement between disability support workers and adults with profound intellectual and multiple disabilities S. Forster (sheridan.forster@monash.edu)* & T. Iacono *Monash University, Australia Aim: For adults with profound intellectual and multiple disabilities (PIMD), life quality is affected by many factors including health, activity involvement, and social networks; but most critical is the quality of daily interaction experienced. Quality interaction for people with PIMD is difcult to describe, however one potential way may be using a motherinfant construct called affect attunement. Affect attunement refers to the use of cross-modal means to recast affect expressions.The aim of the present study was to see if affect attunement is used and, if so, describe the nature of affect attunement used by DSWs in their interactions with adults with PIMD in natural interactions in residential settings. Method: Interactions from 21 pairs of DSWs and adults with PIMD were videorecorded and 10 minutes of each dyad were analysed using the Affect Attunement and Behavioural Coding manual. Results: Sixty-four incidents of affect attunement were found across 16 dyads. DSWs attuned to behaviours of the person with PIMD characterised by motor effort, attention, and some emotional expression. Conclusions: Affect attunement is a pre-existing strength used by DSWs that may be enhanced. Further research is needed to establish the relationship between the use of affect attunement and the quality of interactions.
Symposium: Communication and interaction II Patterns of co-narration in a personal story interaction N. Grove (DrNicolaGrove@fastmail.net)* *Openstorytellers Limited, Black Swan Arts, Frome, England Aim: The aim is to identify the processes of collaboration leading to shared meanings in the co-narration of stories between a supporter and a person with PIMD. Method: Close analysis of a videoed conversation using an ethnopoetic analysis within a dialogic framework (Hymes, 2010; Linell, 2009) is used to explore the ways in which the story is co-constructed, and patterns of listening, initiating and co-narration. Interviews with the supporter are used to explore the ways in which meaning emerges through the interaction. Results: Will analyse the balance of turns, modalities of communication and interpretations by the supporter. Conclusions: Will consider the importance of alternative models of analysis to the traditional cognitive structuralist approach to narrative intervention. The Hanging Out Program (HOP): Does it improve interactions between day service support workers with adults with PIMD? S. Forster (sheridan.forster@monash.edu)* & R. McDonald *Monash University, Australia Aim: To examine if the Hanging Out Program, a new, easy-to-implement program focusing on interactions with people with PIMD, results in improvements in interactions and life quality. Method: People with PIMD experience enormous difculties in communication because they do not always use or understand speech. For interactions to be good, disability support workers (DSWs) need to give the person all of their attention and tune into their individual communication style. HOP (Hanging Out Program) is an approach and attitude designed for DSWs. It involves giving the person with disability focused interaction time. DSWs will attend a short training session followed by implementing HOP for at least 10 minutes a week, for 10 weeks. Changes in interaction and quality of life will be measured using video rating scales of interactions and questionnaires. Additionally, DSWs will be interviewed, examining impressions of interaction before and after HOP and implementation reections. Results: Quantitative and qualitative data will be presented. Conclusions: HOP may be a valuable intervention for improving interactions between DSWs and adults with PIMD in day services. OIVA Interaction Model: Supporting staff to better interaction with people with PMID K. Martikainen (kaisa.martikainen@kvl.)* & K. Burakoff *Communication and Technology Centre Tikoteekki, Finnish Association on Intellectual and Developmental Disabilities, Finland Aim: Interaction with people with PMID is often a challenge for direct support staff. Therefore it is important that the staff has support and training on interaction skills. Method: The OIVA Interaction Model aims at interaction where the staff members are genuinely interested in their service users, endeavor to understand their needs and respond to their communications in an understandable way. OIVA is a process that lasts nine months and is guided by an OIVA guide. The staff team participates in six meetings where they observe themselves in lmed interaction with persons with PMID and decide concrete acts. Results: According to the staff members the OIVA interaction model offers the community an opportunity for regular discussion and sharing experiences. OIVA focuses on positive moments of interaction and shows the strengths and abilities of the staff. OIVA increases the equality of interaction: both partners can participate equally, make initiations and have an effect on the interaction. Conclusions: It is important to ensure work communities that provide services to people with PMID have a possibility to get this service. Therefore Tikoteekki has developed a training model for OIVA guides.

Symposium: Sleep problems and assessment of pain Ramelteon for sleep problems in persons with profound intellectual and multiple disabilities (PIMD) Y. Nagata (yonagata@kd6.so-net.ne.jp)*,T. Matsubasa, A. Kimura & M. Shinohara *KumamotoAshikita Medical Center for The Severely Handicapped, Japan Aim: The aim of this study is to present case reports on persons with profound intellectual and multiple disabilities (PIMD) who had been treated with the medication Ramelteon for sleep problems. Method: Seven adults with PIMD and sleep problems, 3050 years old, received 8 mg of Ramelteon over 2 months. Three patients were treated with 5 mg of melatonin prior to Ramelteon. Two showed good responses to the medication (group A) and one did not (group B). The other four patients were not previously treated with melatonin (group C). Results: Ramelteon was well tolerated in all cases after 2 months of treatment. In group A, one patient lost the good control in her sleep after the replacement of melatonin by Ramelteon. The other two patients previously treated with melatonin (one in group A and one in group B) did not show signicant changes. All four cases in group C did not show improvement in their circadian rhythms dramatically. They slept 4051 min/day longer than before being medicated. One of them remained awake during daytime 66 min/day longer. Conclusions: This case report illustrates the tolerability of Ramelteon for sleep disturbances in seven patients with PIMD. Further research is needed to increase its efcacy.
Symposium: Behavioural problems Is challenging behaviour described in the Individual Educational Plans for people with profound intellectual and multiple disabilities? P. Poppes (p.poppes@rug.nl)*, A.Van der Putten & C.Vlaskamp *Department of Special Needs Education and Child Care, University of Groningen, The Netherlands Aim: To: (a) determine to what extent challenging behaviour, such as self-injurious, stereotypical, and aggressive or destructive behaviour, in people with profound intellectual and multiple disabilities is described in Individual Educational Plans (IEPs), and (b) examine the relationship between the frequency, severity, and type of challenging behaviour, and whether or not the behaviour is part of the IEP. Method: Thirty people with PIMD, aged 265 years (mean: 29, SD: 17) were recruited from six Dutch facilities. The Behavior Problems Inventory (BPI) was used to determine the prevalence, frequency, and severity of challenging behaviour. Consequently, the extent to which behaviour scored on the BPI was also described in the IEPs was determined. We have also examined whether interventions or goals were formulated addressing challenging behaviour. Results: Preliminary results show that approximately 50% of the occurring challenging behaviour in the BPI is also described in IEPs. Goals addressing challenging behaviour turn out to be formulated in 15% of the IEPs. A signicant relationship was found between the severity of challenging behaviour and to what extent challenging behaviour was described in the IEPs. Conclusions: These ndings suggest that challenging behaviour is not automatically part of an IEP for people with PIMD.
The assessment of pain in daily practice in persons with profound intellectual and multiple disabilities: Pilot study into the psychometric properties of the Pain Behaviour Checklist A. van der Putten (a.a.j.van.der.putten@rug.nl)* & C.Vlaskamp *Department of Special Needs Education and Child Care University of Groningen, The Netherlands Aim: Persons with a combination of profound intellectual and motor disabilities (PIMD) are at risk of chronic pain. To asses pain, one use the Pain Behaviour Checklist (PBC) although it is unclear if this instrument can be used daily care situations. We analysed the reliability and validity of the PBC in daily care situations in people with PIMD. Method: Thirtytwo (32) people (16 children and 16 adults) with PIMD were videotaped twice during care moments in which we assumed that pain was prevalent. A care professional scored pain with use of the Visual Analogue Scale (VAS). An independent observer with use of the PBC. Reliability of the PBC was analysed by Spearmans rho and the validation was analysed by correlating the PBC with the VAS scores. Finally, Phi was calculated for both children and adults. Results: The interrater reliability of the PBC is 0.63 and the intrarater reliability is 0.88. Phi, as a measure of the agreement on pain/ no pain between the VAS and the PBC, is .75 in children and .28 in adults. Conclusions: Reliability is satisfactory, validity is good for children but insufcient for adults. It seems that children display different pain-related behaviour than adults.
The relation between the prevalence of challenging behaviour in people with profound intellectual and multiple disabilities and contextual factors P. Poppes (p.poppes@rug.nl)*, A.Van der Putten & C.Vlaskamp *Department of Special Needs Education and Child Care, University of Groningen, The Netherlands Aim: To determine to what extent the prevalence of challenging behaviour in people with profound intellectual and multiple disabilities (PIMD) is related to contextual factors. Method: 144 people with PIMD, aged 566 years (mean: 43, SD: 15) were recruited from two facilities in the Netherlands. An adapted version of the Behaviour Problem Inventory was used to determine prevalence, frequency, and severity of self-injurious, stereotypical, withdrawn, and aggressive/destructive behaviour. Data regarding contextual factors (age of the direct support professionals (DSPs), work experience, education DSPs, living environment, number of people within the group, staff-client ratio, amount of offered activities) were determined using a questionnaire. Results and Conclusions: Preliminary results show that approximately 67% of the participants show self-injurious behaviour; 79% stereotypical; 70% withdrawn; and 28% aggressive/ destructive behaviour. Results regarding the relation with contextual factors will be presented at the congress.

Symposium: Multiple topics IEP goals and objectives of adults with profound intellectual and multiple disabilities G. Petitpierre (ge.petitpierre@bluewin.ch)*, J. Gyger & N. Beaufort *Universit de Genve, Switzerland Aim: In Switzerland, use of the individualised educational programme (IEP) is rmly established, not only in educational establishments for children but also in day centres and residential care homes specically for adults, although it has sometimes been criticised for being inexible and prone to stereotyping to some extent, particularly at the adult level (Chavaroche, 2009). The form and the content of the IEP designed for adults with profound intellectual and multiple disabilities has never been subject to any systematic analytical scrutiny. This study investigated the quality and the content of IEP goals written for 30 randomly sampled adults with profound intellectual and multiple disabilities. Method: The research participants were identied from ten institutions in French-speaking Switzerland. Their IEPs were analysed in depth. The quality of the goals was measured using R-GORI (Notari-Syverson & Shuster, 1995). Within this framework, the analysis of goals and objectives were based on 4 quality indicators (measurability, generality, functionality of the target behaviour/ goals, indications about the instructional/operational context). The content analysis was based on the model of human functioning proposed by AAMR, now AAIDD (Luckasson et al., 2002). Results and Conclusions: Analysis still in progress.
Symposium: Persons with PIMD in Japan Living situation of adults with severe motor and intellctual disabilities (SMID) in Japan S. Sone (sone@inter.net)* & T. Matsubasa *Tokyo Metropolitan Higashiyamato Medical Center for Multiple/Developmental Disabilities, Japan Aim: This presentation will describe the problems of the living situations of adults with SMID. Method: The living situation of adults with SMID has changed with the aging of persons with SMID and changes in the law. There are three types of living situations: living with family and living in institutions with SMID have been the mainstream, while living in care homes started after the enforcement of Structure of Payment for Services and Supports for Persons with Disabilities Pertaining to Welfare Service for Persons with Disabilities in 2006. The number of care homes is still very small. I compared these three situations from the viewpoints of healthcare, physical care, communication and attachment, and social participation, through document research and interviews with the parents. Results: Living with family has advantages in healthcare, communication and attachment, and social participation when parents are young and healthy, but it cannot be continued when parents are ill or grow old. Living in the institutions for SMID has advantage in healthcare, communication and attachment and physical care, but disadvantages in social participation. Living in the care homes has advantage in social participation, but disadvantages in physical care and healthcare. Adults with PIMD in Japan: Perspectives inside and outside
The telling body: Ethics, ethical skill and applications of caregivers faced with persons with profound intellectual and multiple disabilities N.-C. Chen (ncchen@kmu.edu.tw)*, J.-Y. Chen & S.-H. Lee *Faculty of Medicine, Kaohsiung Medical University, Taiwan Aim: Persons with PIMD transmit some kind of language through their physical bodies, which is not usually understandable for others. The aim of this study is to explore the hidden meanings of their language, which is expressed through their physical bodies. Method: This research work focuses on the feeding process of persons with PIMD in a residential house. Research data were collected by eld-/participant-observation and in-depth interview with caregivers. A hermeneutic-phenomenological approach will be implemented to describe and analyze the collected data. Results: What the telling body of persons with PIMD says is decoded through the process of inter-subjective meaning construction. Through the perspective of meta-ethics the study shows the visage of persons with PIMD and reveals the relationship between caregivers and persons with PIMD, namely: a dynamic relationship which is asymmetric in power, asynchronous in time, and anarchic in rules. Conclusions: The study shows that people with PIMD dance paradoxically between autonomy and heteronomy. The results of the study can improve the practical ethical skills of caregivers.
S. Forster (sheridan.forster@monash.edu)* & T. Matsubasa *Monash University, Australia Aim: To describe the current living situation for adults with PIMD living in Japan. Method: The current living situation for adults will be described by researchers in Japan and by a researcher who visited Japan. This multiple perspective method will allow for exploration of the cultural assumptions that underpin practices. Results: In Japan people with severe motor and intellectual disabilities (SMID) have been a focus for many years. People with PIMD are a part of this group. Additionally, there is a large group of people who in addition to having PIMD are medically-dependent (e.g., require ventilators and IV nutrition). Adults with PIMD live in family homes and institutions. Japanese culture inuences the living situation of people with PIMD. Two examples of people with PIMD (one of whom is medically-dependent) will be described to illustrate living situations and the inuence of Japanese culture on daily life. Conclusions: The lives of people with PIMD are different in each country. The situation in Japan, from the perspective of a native Japanese person and an outsider, has been described. A trial of information sharing among medical and welfare organizations for persons with SMID S. Sone (sone@inter.net)*, N.Yotani,Y. Iwasaki, S.Tomita, N.Tanuma, M. Fukumizu, M. Kiuchi, K. Koyama, O. Fukatsu, M.Tamura & T. Nakamura *Tokyo Metropolitan Higashiyamato Medical Center for Multiple/Developmental Disabilities, Japan Aim: To promote the information sharing among medical and welfare facilities in Tokyo. Method: Many medical and welfare facilities take part in supporting the daily life of each person with severe motor and intellectual disabilities (SMID) and special health care needs in Tokyo, which can lead to difculties in information sharing. Therefore child neurologists, rehabilitation doctors, a physical therapist, and a medical nurse got together in April 2010, and selected the required information for emergency care, admission, and respite care out of various records. The information was put into one notebook, which had 3 parts: medical information, movement and posture, life care and communication. Each part is to be written by a doctor in charge, the family or the physical therapist, and the family or a medical nurse in charge, respectively. This notebook is then brought with the person with SMID and shown when he/she need to tell his/her information to the others. The rst pilot study with persons with SMID living with their families started in August 2011, involving 12 hospitals or medical centers for persons with SMID. Results and Conclusions: We will give an interim report of the rst pilot study.

Symposium: Communication and social interaction Perspective and power: Examining the interactions and relationships between adults with congential deafblindness, disability support workers, clinicians and researchers M. Prain (merryprain@gmail.com)*, K. McVilly & P. Ramcharan *RMIT University, Melbourne, Australia Aim: This study examined interactions between adults with congenital deafblindness and their support staff from the perspective of researchers and support staff. This information will provide valuable evidence to shape policy, staff development, and future research. Method: This study employed a mixed-method approach and drew on literature on adults with profound intellectual and multiple disabilities. Interactions between adults with congenital deafblindness and their support staff were videoed and analysed using a previously-validated observation coding system. Staff were interviewed about their interactions with the adults with deafblindness whom they support, and these interviews were analysed for key themes. Results: Both the videos and staff interviews revealed extremely limited social interaction between the staff and adults with deafblindness outside of personal care tasks. However, the study highlighted the differences in perspective and power of support staff and researchers which potentially limits the efcacy of both intervention and research with adults with congenital deafblindness. Conclusions: The results demonstrate the importance of integrating quantitative and qualitative methods in research involving populations with complex and ideosyncratic behaviour, such as those with congenital deafblindness and profound and multiple disabilities. Social communication for adults who communicate at a symbolic but nonlinguistic level H. Johnson (h.johnson@latrobe.edu.au)*,T. Iacono, J. Douglas & C. Bigby *La Trobe University,Victoria, Australia Aim: This presentation focuses on the social interactions that occur between an adult with an intellectual disability, who communicates at a symbolic but non-linguistic level, and those with whom he has positive relationships. Method: The main methods of data collection were participant observation and interviews. The data were analysed using a grounded theory approach. Results: Data for this presentation have been drawn from one case study, Brian, who participated in a larger study. Brian obtained scores on the Vineland Adaptive Behaviour Scales that indicated he had a profound disability, but he demonstrated communication that varied from that usually associated with this level of intellectual disability; rather, Brian demonstrated symbolic, but non-linguistic skills, and used formal and informal means of communication for a range of pragmatic functions. His social interactions in relationships with family members and paid workers included aspects of having fun and hanging out. Conclusions: Brians communication prole challenges assumptions about the skills of people with profound intellectual disability. Adults who are symbolic non-linguistic communicators develop relationships with others in unique ways that may not always be recognised. Hence, support may be needed to foster their relationships. Individualized augmentative communication for individuals with autism spectrum disorder and intellectual disability J. Maljaars (onderzoek.oc@ppw.kuleuven.be)*, R.Verpoorten, I.Van Berckelaer-Onnes & I. Noens *Katholieke Universiteit Leuven, Belgium Aim: Augmentative communication is very important for individuals with autism spectrum disorder (ASD) and intellectual disability (ID). The ComFor (Forerunners in Communication) (Verpoorten, Noens, & Van Berckelaer-Onnes, Dutch version: 2004, revised Dutch version: 2007; English version: 2008) is an instrument for the indication of augmentative communication, primarily developed for non-verbal or minimally verbal individuals with ASD and ID. Recently, the ComFor-V was adapted for individuals with co-occurring visual impairment. This study aims: (1) to assess the psychometric properties of the ComFor and ComFor-V; and (2) study the implementation of ComFor-V results and effectiveness of individualized augmentative communication. Method: The ComFor and the ComFor-V were tested on a sample of 623 and 84 individuals from the Netherlands and Flanders, respectively. The implementation of augmentative communication based on ComFor-V results was investigated via 10 case studies. Results: The data generally support the reliability and validity of the ComFor and ComFor-V. Implementation of individualized augmentative communication signicantly improved the level of independence of individuals. Conclusions: Both the ComFor and the ComFor-V appear to be promising tools to explore underlying competence for augmentative communication in individuals with ASD and ID (and low vision or blindness).
Symposium: Education Evidence-based methods for teaching cause and effect to learners with PMID J. Ware (j.ware@bangor.ac.uk)*, P.Thorpe, C. Butler & B. Lye, *College of Education and Lifelong Learning, Bangor University,Wales Aim: To present two evidence-based methods for teaching cause and effect to learners with PMID, and discuss issues in introducing them in practice. Evidence suggests that cause and effect can be taught effectively to learners with PMID using switch-based methods. There is some evidence that cause and effect can be taught to these learners through accidental contact with carefully positioned reactive items. This poster presents two methods of teaching cause and effect (the Declan suite, a switch based method; and the BeActive box, a reactive method) and discusses evidence for their effectiveness collected during a pilot study in an English special school. Method: The methods were introduced to staff during an inservice training day. They then identied pupils who they felt would benet from one of the two methods and implemented the intervention on a daily basis with each child over the course of a school term. Automated computer records, analysis of video, and staff interviews were used to assess the effectiveness and practicality of the two methods. Results and Conclusions: Staff required additional support to select pupils and set up both methods, but wanted to own the study, and to have quick access to the results to guide teaching. Outcomes of communication mentor-modelling for teaching staff in segregated and inclusive classrooms: Observed improvements in the alertness and involvement of students with multiple and severe disability P. Foreman, M. Arthur-Kelly, J. Neilands (judith.neilands@newcastle.edu.au)* & D. Bennett *The University of Newcastle, New South Wales, Australia Aim: Individuals with multiple and severe disability present some of the most complex and urgent challenges to educators with respect to the improvement of their engagement and involvement in communicative and socially-centred exchanges. Method: This paper reports the ndings of an intervention study designed to enhance the interactive skills of students with multiple and severe disability (MSD) using an in-class mentor model of staff development to improve the skills and strategies of their communication partners in two distinct educational settings. Observational data was collected on eight students with MSD and their sixteen teachers and paraprofessionals, using a multiple baseline across students design in one setting type, then repeated in a second setting. Results: Results indicated variable improvements in student alertness and increased communicative interactions and a general uptake of suggested teaching strategies and supports. Conclusions: Implications for further research and application to daily practices in classrooms are discussed. Encouraging thinking skills: What are the implications of theory and practice with young children for teaching pupils with PMID? J. Porter (j.porter@bath.ac.uk)* & J. Georgeson *University of Bath, England, UK Aim: The literature in relation to early thinking skills for pupils with profound and multiple impairment is limited, and therefore it is important to examine closely the development of young typically-developing children. The theoretical basis for this work is contested, although the empirical evidence provide interesting illustration of the ways in which young children respond giving meaning to contexts that are constructed for them. Method: This presentation draws on observational work undertaken in two early years settings and pilot interventions with pupils with PIMD. Results: An examination of the contexts which elicit the attention of young children and engage them in early problem solving behaviours and an analysis of their application to teaching two pupils with PIMD. A focus is placed on mathematical understandings of space, time and number. Conclusions: Knowledge of the ways in which typically-developing youngsters develop understandings of space, time and number can inform the development of baseline measures and pedagogic interventions with pupils with PIMD.

Posters: Quality of life for people with profound multiple disabilities: A Delphi study M.Verdugo Alonso (inico@usal.es)*, B. Arias, L. Gmez, M. Santamara & P. Navas *Instituto Universitario de Integracin (INICO), Universidad de Salamanca, Spain Aim: The goal of this poster is to present the development of a new objective scale to assess quality of life in persons with severe, profound, and multiple disabilities from an objective perspective. This poster describes the process of construction and the main characteristics of a new scale, the San Martn Scale, which will be composed of around 80 items reecting objective aspects of the eight quality of life domains and will have a fouroption answer format. Method: A Delphi study is being carried out with 12 experts on multiple and profound disabilities from Spain. The study is being implemented online by means of Moodle platform. A minimum of three rounds is scheduled. Results: Results of the Delphi study will be analyzed in terms of concordance and the application of the Many-Facet Rasch Measurement to constructed-response items and rater analysis. Conclusions: The data analyses will allow us to detect raters that have extreme values on the continuum and a comprehensive understanding of the different aspects that are being evaluated (suitability, importance, observability, sensibility, and difculty). Evidence about the content validity of the items will be provided. Artistic activities for people with severe motor and intellectual disabilities in Japan H. Goma (goma@kyokyo-u.ac.jp)*, K. Ota, H. Kotani, N. Sato & R. Ushio *Kyoto University of Education, Japan Aim: It is important for people with severe disabilities to enjoy their lives through their favorite activities such as artistic programs. We investigated several artistic programs provided for people with severe motor and intellectual disabilities (SMID) in Japan. Method: A questionnaire about artistic programs was sent to 413 institutions in which people with SMID reside or commute. Results: 194 institutions (47.0%) answered the questions, and 79.9% of these institutions were conducting artistic programs. Musical therapy (81.3%), snoezelen (68.4%), aroma therapy (43.2%), drawing (41.9%), gardening (24.5%), calligraphy(21.3%), and ceramic art (12.9%) were common. The purposes of these programs were to have fun, to express oneself, to relax, to maintain emotional stability, and to communicate with other people and so on. Based on an evaluation of observation record or video record for expression of smile or emotional stability, 88.6% were effective. Conclusions: Many institutions provide artistic programs for people with SMID, and artistic activities seem to be meaningful. So, we could expect artistic programs spread further in the future. Importance of support for persons with severe motor and intellectual disabilities (SMID) living in the community at a residential hospital in Tokyo Y. Iwasaki (iwasaki_trc@mtrc.jp)*, A.Yamamoto, H. Noguchi, S. Honzawa, Y. Okoshi, S. Ide,Y. Arai, , H. Ota,T. Masuyama & M. Arima *Tokyo Metropolitan Tobu Medical Center for Severe Developmental/Multiple Disabilities, Tokyo, Japan Aim: Our hospital was established in the east of Tokyo in 2005. One of the objectives of the hospital is to support persons with extremely profound disabilities in the community. The hospital provides 26 beds for respite care, and day care service for persons with SMID. We will report the current status of users of the respite care and the day care service. Method: The users of the day care center and respite care from 2005 to 2010 have been examined, particularly with respect to support, medical care, and the severity of the disabilities. Results: The number of users of respite care increased from 2005 to 2010, especially those who needed intense medical care. In 2005, the number of the users having mechanical ventilation was 77, and has increased to 339 in 2010. In the day care center, users with intense medical needs have also increased recently. Conclusions: Persons with SMID living in our community require more intense medical care and their needs for respite care and day care service have increased. Importance of supports for persons with SMID living in the community has been emphasized and the role of residential hospitals has been changing recently in Japan. Posters:
Assessment of pain in persons with profound intellectual and multiple disabilities: Analysis of reliability and validity of the REPOS E. Kreukniet (Eveline.Kreukniet@sheerenloo.nl)* & A. van der Putten *s Heeren Loo, The Netherlands Aim: The purpose of this study is to analyse the psychometric properties (reliability and validity) of the Rotterdam Elderly Pain Observation Scale (REPOS) to assess the presence of pain in daily practice in adults with profound intellectual and multiple disabilities (PIMD). Method: In total, 100 adults (>18 years) with a combination of profound intellectual and severe or profound motor disabilities were included. For each participant, a two minute video-recording was made during daily activities in which it was assumed pain was prevalent. The construction and validation of the adapted REPOS was done by means of the item response theory (Mokken scale analysis).Two direct support professionals scored all the participants on the REPOS (interrater reliability). The video-recordings of 20 participants were scored twice by the same direct support professional (intra-rater reliability). To assess predictive validity, scores on the adapted REPOS will be compared to scores on the FACS (Facial Action Coding System), a known valid instrument to assess pain. Results and Conclusions: The rst results will be presented at the conference. Can I make you smile? Behavioural and physiological responses of two children with PIMD to a certied therapy dog M. Lima (lima.mariely@gmail.com)*, K. Silva, I. Amaral, A. Magalhes & L. de Sousa *Instituto de Cincias Biomdicas Abel Salazar, Universidade do Porto, Portugal Aim: Dog assisted interventions have grown in popularity in many care units for different populations. To date, only one study has tried to assess the efcacy of a dog-assisted therapy program for children with PIMD. Our work aimed at explore the potential of a certied therapy dog as a sensory stimulus to induce positive responses in children with PIMD. Method: Two children with PIMD were presented with a therapy dog, and their behavioural and physiological responses were monitored. With the aim of discussing the benets of therapy dogs in relation to the effects produced by elements pertaining to the daily life of individuals with PIMD, the responsiveness of the both children to sensory stimulation provided by a familiar caregiver and by an articial multisensory stimulus was also assessed. Results: Participants appeared to respond positively to the presence of the dog in much the same way as they responded to the familiar caregiver. Contrastingly, they showed opposite responses to the articial multisensory stimulus. Conclusions: This study provides quantitative indications that therapy dogs may promote emotional well-being in some children with PIMD, namely as pleasant, relaxing and attention getting stimuli with which these individuals can positively engage during planned interventions. Intelligent quotient and posture/walking abilities in persons with severe motor and intellectual disabilities in residential institutions F. Mikami (fmikami@mw.kawasaki-m.ac.jp)*,T. Mita & K. Mita *Kawasaki University of Medical Welfare, Japan Aim: The residential institution for persons with severe motor and intellectual disabilities (SMID) is an extremely unique welfare system in Japan and provides comprehensive living supports, medical care and educational programs. The present study aimed to examine motor and intellectual impairments for persons admitted to residential institutions from 1979 to 2011. Method: Survey data were collected; there were 250,137 pieces of data. Intelligence quotient (IQ) and posture/walking ability were assessed for the following four categorized groups: (A) IQ < 35 and bedridden or sitting; (B) IQ < 35 and disabled walking, independent walking or running; (C) IQ > 35 and bedridden or sitting; and (D) IQ > 35 and disabled walking, independent walking or running. The rate of the four group members was calculated every year, and the change with year was then investigated. Results and Conclusions: The admission rate of (A) group members increased progressively from 53% to 74% for 33 years, while that of (B) group decreased from 31% to 21%. Both (C) and (D) group remained at the rate of less than 5%. Thus most members of residential institutions for persons with SMID have been those with an IQ lower than 35 and with different motor impairments during 33 years.

Posters: The present situation of children with SMID-MCDG and their parents in Japan H. Ozawa (yurioz@med.toho-u.ac.jp)*, M.Kanda, K, Kishi, S.Takechi, S. Watanabe *Department of Child Neurology, Japan Aim: Prevalence of SMID in Japan is estimated at 0.031%, meaning about 39500 persons. We examined the present situation of children with severe motor and intellectual disabilities, specically the medical care dependent group (SMID-MCDG) in four areas in Japan (Tama area in Tokyo, Kochi, Shimane, Shizuoka) by means of a questionnaire survey. Method: The survey was conducted on the family members of 259 outpatients. Results and Conclusion: The mean age was 15.8 years of age. Forty-three patients used a home respirator;125 patients had a tracheotomy; 56 patients did oxygen therapy; 137 patients required repetitive aspiration more than once per hour.; and 254 patients were tube feeding. The mean age of home carers (mainly mothers) was 46.2 years of age, and their average sleep time was 5.2 hours. So we must create versatile supports for social and medical care. Health and well-being of a sample of Canadian children with severe/ profound/multiple disabilities R. Shine (rshine@yorku.ca)*, A. Perry & J. Weiss *GO4KIDDS,York University, Ontario, Canada Aim: There is little research about children with severe/profound/multiple developmental disabilities (DD) in Canada. This population is often excluded from research due to levels of functioning, co-morbidities, or measurement issues. This poster will provide information about the health and well-being of children in Canada with severe/profound/multiple DD. Method: GO4KIDDS is a Canadian team project exploring the health, well-being, and social inclusion of school aged children with severe DD and that of their parents. To date, 164 parents of children with severe/profound/ multiple DD (a subset of a larger group of parents) have completed an online or paper survey. Results: Parents report high levels of maladaptive behaviours (e.g., 31% display frequent self-injury, 72% display frequent stereotypies, and 38% display frequent aggression). Social participation is low, (e.g., 80% never or rarely go to birthday parties, 85% never or rarely play on sports teams, and 76% never or rarely take part in community activities). The majority of parents (78%) do not believe, or are unsure, that their child is achieving his/her potential. Conclusions: These children display variability in symptoms and characteristics. In general they experience high levels of maladaptive behaviour, and low levels of social participation. Medical and social needs of profound intellectual and multiple disability (PIMD) in Japan S. Suemitsu (suemitu@asahigawasou.or.jp)*, S. Nishima, S.Takashima, K. Mita,T. Konishi,T. Murata, N. Miyazaki,T. Mito,T. Matsubasa, A. Otsuka, M. Kudo, S. Murashita & K. Sumihara *Asahigawaso Medical Welfare Center and Kawasaki University of Medical Welfare, Japan Aim: It is estimated that approximately 25,000 persons with PIMD live at home and 6000 of them use facilities for day care service tailored to PIMD needs. Others are going to special schools, with the remainder receiving their treatment at home and being cared for by family members. Method: We assessed the overall condition of these PMID persons by a medical checklist which included epilepsy, cardio-vascular disorders, respertory disorders, gastio-intestinal disorders and so on. In addition, social support needs were assessed. Results: We found high rates of medical needs, especially epileptic attacks, gastro-esophageal reex, and respiratory difculties among others. There were also intensive social support needs. Conclusions: Day care services tailored to PIMD needs must always be supported by medical staff and facilities. Posters:
The relationship between mood and emotional reactivity for people with severe and profound ID P.Vos (pieter.vos@ppw.kuleuven.be)*, P. De Cock, K. Petry, W.Van Den Noortgate & B. Maes *Katholieke Universiteit Leuven, Belguim Aim: Insight into the relationship between emotional reactivity and mood can aid both the detection of low mood in persons with severe and profound ID and the measurement of their subjective well-being. Until now, however, little is known about this connection. Therefore, in this study, we wanted to investigate if, as in people without disabilities, mood and emotions show a positive relationship for people with severe and profound ID. Method: During three weeks 27 particpants were presented with 4 staff-selected negative and 4 staff-selected positive stimuli. During the presentation participants were videotaped and each behaviour was coded using the observational method of Petry and Maes (2006). As a measure of mood, the staff completed the MIPQ (Ross & Oliver, 2003) at the end of the three weeks. Results: We found a positive linear relationship between mood and emotions when the participants were presented with positive stimuli but not when they were presented with negative stimuli. Conclusions: These results point to the importance of using mood and emotion in the assessment of QOL of people with severe and profound ID and of monitoring changes in the reactions towards positive stimuli as indicators of low mood. Teaching Cause and Effect to Learners with PMID J. Ware (j.ware@bangor.ac.uk)*, C. Butler, B. Lye & P.Thorpe *College of Education and Lifelong Learning, Bangor University,Wales, UK Aim: To compare two methods of teaching Contingency Awareness (the BeActive Box and the Declan Suite) to learners with PMLD within a classroom setting. Method: Eight learners with PMLD within one school were recruited for the study, two in each of four classes. They were assessed using the Uzgiris and Hunt Scales and Routes for Learning. Learners were allocated to the two methods by school staff. A training day was at the start of the study. Staff then implemented the chosen intervention on a daily basis with each child over the course of a school term. The development of contingency awareness for each learner was measured using automated computer records, analysis of video, and staff interviews. Staff interviews and eld notes were analysed to assess the sustainability of the two methods within a classroom setting. Results: Early results suggest that the computerized recording available for the Declan Suite made progress easier to measure. It was more exible, offering staff more obvious options for building on pupil progress. Regular visits to the school for data collection were also used for discussion and trouble-shooting Conclusions: Both methods hold promise for teaching contingency-awareness, but easily accessible support is needed for sustainability.

Symposium: Rights and the Quality of Life approach The well-being of Canadian youth with and without intellectual disability: A rights-based perspective A. Savage (amsavage@ualberta.ca)* *Faculty of Rehabilitation Medicine, University of Alberta,Canada Aim: This study employed a rights-based framework to investigate the economic, social and subjective well-being/life satisfaction of Canadian young people with disability. Method: The method involves a secondary analysis of the Canadian Community Health Survey (CCHS). Two hypotheses were tested. One hypothesis is that compared with their nondisabled peers, young people with intellectual disability, 1529 years, report lower subjective well-being. The second hypothesis is that the lower subjective well-being of young people with intellectual disabilities can be explained by relative social and economic disadvantage. Results: Findings demonstrate that young Canadians with disability fare poorer than their non-disabled peers on indicators of economic, social and subjective wellbeing. The poorer subjective well-being of young people with intellectual disability is partially explained by economic disadvantage. Challenges inherent in using national data sets to investigate the lives and well-being of persons with intellectual disability will be discussed. Conclusions: Findings present an indication of the task ahead in improving the well-being and advancing the rights of young people with disability in Canada. Future efforts will follow a cohort of Canadian children into adolescence to identify disability-based inequities in the distribution of well-being and to further investigate mechanisms linking disability, disadvantage and subjective wellbeing over time. How to provide evidence for quality of life outcomes? A. Schippers (alice.schippers@tiscali.nl)*, I. Brown, N. Zuna, F. Rilotta & G. Fabila *Disability Studies in the Netherlands, Amersfoort, Utrecht, The Netherlands A working group from IASSIDs Quality of Life (QoL) SIRG will discuss a comprehensive framework that provides evidence for enhancing quality outcomes for people with disabilities throughout the world.This group is presently engaged in developing a framework in relation to models of QoL outcomes, such as the UN-CRPD. Results of several QoL research projects conducted over the past few years will be used to demonstrate evidence aligned with the principles of the UN-CRPD. The QoL framework addresses systemic factors, such as policy and programs, individual and familiy factors adressing demographics and characteristics of the person with a disability, and their family as well as attributions of meaning of disability and meeting high expectations of those involved. The framework includes: (1) supportive policies, aiming at UN-CRPDs articles such as the right to live and the integrity of the person; (2) supportive environments (e.g., independent living and respect for family); and (3) indicators of personal quality of life (e.g., health, standard of living, participation in public life). We will provide an opportunity for discussion about the framework and the possible evidence to gain collective insight about how best to enhance quality outcomes for people with disabilities.
Quality of Life
Symposium: Quality of life from the perspective of people with disabilities Assessing validity of the Uppsala Quality of Life Model . Umb-Carlsson (oie.umb-carlsson@pubcare.uu.se)* *Department of Public Health and Caring Sciences, Disability and Habilitation, Uppsala University, Sweden Aim: Quality of life (QoL) is a popular measure in research on people with ID and literature calls for valid empirically-based models and theories. The aim of the present study is to validate or revise the empirically-based Uppsala QoL model which describes the essential features of QoL from the perspective of people with ID. The model indicates that the general essence of QoL consists of well-being and ve themes: social adult status, control of life, personal safety, social belonging and self-chosen solitude. Method: When assessing validity of a QoL model for people with ID the views of people with ID are highly relevant. Thus, data was obtained by four focus groups of people with ID. To include people with ID throughout the research process, an advisory group of people with ID was established. Qualitative content analysis using a directed-approach will be used to analyze data. Results: The analyses are in progress and preliminary results will be presented and discussed. Conclusions: The use of a participatory approach in this study enhances our understanding of QoL and provides informed advice to practitioners by including the perspective of people with ID. Illuminating childrens perspectives on their own quality of life R. Renwick (r.renwick@utoronto.ca)* & A. Fudge Schormans *Quality of Life Research Unit, University of Toronto, Canada Aim: Most of the sparse research on quality of life (QOL) for children with intellectual disabilities (ID) relies on proxy reports (i.e., parents, teachers). Childrens voices are missing from the literature. This qualitative research examined the nature of QoL from the perspectives of children with ID themselves, using new video methodology. Method: Nine children (912 years) with diverse ID diagnostic labels and a range of backgrounds participated in three videotaped sessions exploring their perspectives about their own QOL. The three sessions differed in the amount of control the child had over the camera and the environmental contexts (e.g., home, school) for the videotaping. Grounded theory analysis was conducted on the resulting 27 hours of image-text video data. Results: A conceptual model of QOL linking several themes emerged from the image-text data. Themes included contributions to QOL of: relationships with important others in the childrens lives (e.g., family, friends, teachers), environmental supports, and choices regarding leisure activities. Conclusions: This video methodology allowed children to reveal what QOL is like for them and what contributes to making QOL good/not so good. It also permitted inclusion of children who are non-speaking. Applications to client-centered practice and future research are outlined. The inuence of environmental factors, personal characteristics and supports strategies on QOL-related personal outcomes J. van Loon (jloon@arduin.nl)*, C. Claes & R. Schalock *Arduin Foundation, The Netherlands Aim: The aim of this study was to explore the relation between three constructs that have an important impact on services for people with ID: the QOL concept, the supports paradigm, and the importance of the ecological model. The assumption was that next to personal characteristics QOL is also inuenced by environmental factors and supports strategies. The impact of these three clusters was studied. Method: Data were collected in Arduin, in the Netherlands. Personal outcomes were measured with the Personal Outcomes Scale. A hierarchical multiple regression design was used to determine the role that available supports strategies and environmental factors play in assessed quality of life-related personal outcomes, after controlling for client characteristics. Results: After controlling for client characteristics, environmental factors accounted for 10% of the variance in QOL. Available support strategies accounted for an additional 8% of the variance explained. After controlling for the level of ID, living more independently and having a job were signicantly related to enhanced personal outcomes. Conclusions: Results indicated that QOL outcomes were signicantly impacted by the availability of support strategies, living arrangements, status of employment, and level of ID. The challenge in enhancing QOL is largest for people with more severe ID.

Symposium:The Supports Intensity Scale I American Association of Intellectual and Developmental Disabilities (AAIDD) The Supports Intensity Scale: International uses and research ndings J.Thompson (jrthomp@ilstu.edu)* *Department of Special Education, Illinois State University, US The Supports Intensity Scale (SIS) provides a standardized measure of supports needed by a person with intellectual and related developmental disabilities (IDD) to participate in settings and activities. The English version has been translated and published in 13 additional languages, and data have been collected on a variety of psychometric properties and uses by researchers based in North America, South America, Europe, and Asia. This symposium will provide an overview of research ndings from around the globe, as well as reports from researchers who are in the process of or have recently completed studies using the SIS not yet been reported in published literature. Presentations by researchers from the United States, Canada, Portugual, Iceland, the Netherlands, Belgium, Italy, and Spain will include: a review of ndings from refereed publications; a review of psychometric properties published in translated versions of the scale; a summary of data and issues from researchers who have investigated the SISs application to resource allocation models; and a report of personal outcomes when the SIS has been used in an assessment and planning process. Preliminary data collected on the new Childrens Supports Intensity Scale will be reported from researchers using the English, Spanish, and Dutch versions. The Supports Intensity Scale: A review of the published literature and a look towards the future J.Thompson (jrthomp@ilstu.edu)* *Department of Special Education, Illinois State University, US Aim: The Supports Intensity Scale (SIS), rst published in English in 2004, has now been translated and published in 10 languages, and is being used in at least 14 countries. This presentation will focus on a review of 70 separate publications related to the SIS that include articles in peerreviewed journals where research ndings were reported, monographs and governmental reports (most of which have focused on using the SIS for resource allocation decisions as well as best practices in training SIS interviewers), and practitioner level publications (most of which have focused on using SIS information when developing individualized service and support plans). Method: Gaps in the professional and fugitive literature will be discussed in conjunction with needs for future research as well as needs for clear and rich descriptions of effective professional and organizational practices. Results and Conclusions: Future directions for supports needs assessment and planning will be shared. The Childrens Supports Intensity Scale M. Wehmeyer (wehmeyer@ku.edu)* & M. J.Tasse *Kansas University Center on Developmental Disabilities, University of Kansas, Lawrence, Kansas, US Aim: The Childrens version of the Supports Intensity Scale is a measure of the needed support of children and youth with intellectual disability, ages 6 through 16, that is being normed and will accompany the Adult version of the Supports Intensity Scale. Method: The Childrens SIS is being normed currently with children and youth across North America, including the United States and Canada. Results: The presentation will provide an overview of the Childrens SIS, its intent and structure, and provide information about the norming process and the research accompanying that process. Conclusions: The Childrens SIS is a new instrument being normed by researchers within the American Association on Intellectual and Developmental Disabilities for use to determine the support needs of children and youth with intellectual disability.
Quality of Life
Symposium:The Supports Intensity Scale II American Association of Intellectual and Developmental Disabilities (AAIDD) Lessons from Italy L. Croce (luigi.croce@libero.it)*, M. Leoni, M. Lombardi, R. Cavagnola & M. Nolani *Catholic University, ANFFAS, Italy Aim: We describe the need for support proles of the population in northern Italy related to clinical, sociodemographic, and functioning parameters, and to understand the correlations between the need of support and other clinical and functional variables. Understanding the statistical nature of such correlations makes it possible to evaluate the utility and value of functional and clinical information in order to plan and manage qualityof-life-oriented-supports. Method: The participants were 800 service users from 18 organizations. Support requirements were analyzed using the SIS (Support Intensity Scale). The diagnosis and functioning were assessed using the SIDI instrument used to allocate resources by the regional health system of Lombardy, based on ICD 9 CM and ICF evaluation (WHO). Statistical analysis (correlations, ANOVA, t-test) were conducted. Results: SIS is a reliable instrument. There were signicant differences in the SIS index between people in residential and people in daily services. The Support Intensity Level is a better indicator for the need for resources to be allocated than SIDI. Conclusions: The assessed need of support indicated a specic set of functional information which cannot be predicted or correlated with other functional or clinical variables (e.g., the diagnosis or the functioning) as the SIDI instrument does. The Supports Intensity Scale: Lessons from Portugal P. Lopes-dos-Santos (plsantos.fpce@gmail.com)*, M. Santos, M. Sanches-Ferreira, M. Maia & A. C. Lopes *University of Porto, Portugal Aim: Reliable and valid measures are critical prerequisites for the appropriate use of assessment tools in any language or cultural group. The present report documents the adaptation and the validation process of the SIS to Portugal. Method: Standard methodological guidelines for the translation and cross-cultural adaptation of instruments were used to build the Portuguese version of the SIS. This version was applied to a national sample of individuals assessed with intellectual disabilities (from mild to profound). As part of the data collection process, informal evaluations of support needs and adaptive behaviour were carried out in order to gather information for determining criterion-related validity. Results: Cronbachs alpha values and split-half correlation coefcient scores indicated that the Portuguese SIS has excellent internal consistency. Measures of inter-interviewer reliability were also high. Results showed signicant relationships between SIS scores and measures used to estimate criterion validity. In support of construct validity, strong correlations were found between SIS scores and the severity of intellectual disability. Conclusions: Although the process of developing a measurement instrument is always a never ending task, the current Portuguese SIS version seems to be a reliable, internally consistent, and valid tool for assessing supports required by people with intellectual disabilities.

Symposium:The Supports Intensity Scale III American Association of Intellectual and Developmental Disabilities (AAIDD) The Supports Intensity Scale: Lessons from Iceland G. Arnkelsson (gudmuarn@hi.is)* & T. Sigurdsson *Department of Psychology, University of Iceland, Reykjavik, Iceland Aim: To assess the utility of the Supports Intensity Scale (SIS) for funding in a whole-nation sample involving a mix of disabilities. Method: SIS was administered to a total of 924 people with auditory, visual, autistic, motor or intellectual disabilities in Iceland. Service needs were assessed on a sevenpoint scale. A random sample of 70 was reassessed for reliability estimates. A total of 94 participants took part in 68 month stability study. Results: Overall, supports needs explained 70% of the variance in service needs. Explained variance was lowest for psychiatric disabilities (47%), followed by motor disabilities (64%). Stability over time was excellent with correlations between .61 and .86, with the exception of behavioural supports which had a correlation of .50. Interviewers showed diverse discrepancy trends over time. Conclusions: SIS provides useful information for predicting service needs, i.e. funding. The results indicate differential predictive validity that must be scrutinized further. Long-term stability is excellent. An ongoing QA program is important to detect and correct changes in assessment accuracy over time.
Quality of Life
Symposium:The Supports Intensity Scale IV American Association of Intellectual and Developmental Disabilities (AAIDD) The Supports Intensity Scale: Lessons from Spain M. A.Verdugo Alonso (inico@usal.es)*, L. E. Gmez, & P. Navas *INICO, Universidad de Salamanca, Spain Aim: The main goal of this paper is to describe different uses of the Support Intensity Scale (SIS) and SIS for Children in Spain. Method: The SIS scale has been translated and adapted correctly for the Spanish language in 2007. Since then, it has become an instrument of common use in most centers, services, and organizations working with persons with intellectual and developmental disabilities. Results: SIS has proven to be very useful for planning individual supports, and for developing strategies to improve quality-of-life-related personal outcomes. SIS is also used as a regular part of all individual support programs. Administrative agencies are starting to consider the use of SIS for the differential distribution of economic resources. Last year, the SIS for Children was adapted to Spanish, and results will be shown after applying it to an extended and representative sample. Conclusions: SIS Scale is becoming an assessment tool of support standards in programs for people with intellectual disabilities.
The Supports Intensity Scale: Lessons from Quebec The Supports Intensity Scale: Lessons from the Netherlands and Belgium W. Buntinx (w.buntinx@maastrichtuniversity.nl)* *Governor Kremers Centre, Maastricht University, The Netherlands Aim: To communicate empirical ndings about psychometric qualities as well as experiences from training practices with respect to the Supports Intensity Scale (SIS) in Belgium and the Netherlands. The presentaton includes applications of the scale as well as feedback from ve years of SIS training sessions. Method: Validity, reliability, scale standardization methodology and qualitative methods (training sessions). Results: Results cover four empirical psychometric studies with the Dutch version of the SIS. The results are compared with outcomes of other international studies as well as with the original SIS standardization version. Information will be given about how to address some issues related to the specic nature of a scale addressing support intensity needs in training sessions. Conclusions: Careful training is a key factor to obtaining reliable results and applying SIS outcomes in the context of assessment, resource allocation, and Individual Supports Plans. The robustness of the SIS allows the acquisition of reliable and valid SIS Index outcomes even if one or more particular subscale(s) should be left out. A.Tremblay (tremblay.audree@courrier.uqam.ca)* & D. Morin *Universit du Qubec Montral, Qubec, Canada Aim: The model of service guidance in Quebec for people with ID is divided into three levels: general, specialized and ultraspecialized services. However, no standardized tool is used to specically determine the level of services specialization. Therefore, the purpose of this research was to study the link between this model of service guidance and SIS-F scores. Method: To establish a comparison point, a panel of experts assessed the required level of services specialization of 30 participants with intellectual disabilities (ID) from a developmental agency in Montreal. Subsequently, the educator of each participant completed the SIS-F and the SIB-R Problem Behavior Scale with trained interviewers. Results: A third of all participants were not receiving the services they needed according to the expert panel. Analyses indicated a signicant difference between levels of services for the Exceptional Behavioral Support Needs. Moreover, those differences were also found for the SIB-R. Results will be further detailed during the presentation. Conclusions: Determining the required services for individuals with ID is essential to direct the person to the level of services that best meets his support needs. This study shows that much remains to be done to implement a standardized assessment procedure across Quebec.

Symposium:The Supports Intensity Scale V American Association of Intellectual and Developmental Disabilities (AAIDD) The Supports Intensity Scale: Applications for service provider organizations J. H. M. van Loon (jloon@arduin.nl)* *Arduin Foundation and Ghent University, The Netherlands Aim: Service providers have as a core task to support clients to enhance their quality of life. The changeover to community living, from care to the supports paradigm, urged more evidence-based applications. This necessitated a change in the support methodologies. Method: The Supports Intensity Scale (SIS) and Personal Outcomes Scale (POS) were used to develop a person-centered support methodology. People are interviewed on their wishes and goals and the SIS is administered. Then, within a QOLframework, an Individual Supports Plan (ISP) is written. The personal outcomes of supports are measured with the POS. This methodology uses web-based applications. Results: This resulted in a model for a Person Centered Supports Methodology, using valid and reliable instruments with the focus on enhancing the individuals QOL. An alignment was made between input (goals and support needs), throughput (ISP), and output (QOL, measured as personal outcomes of supports). Data on SIS and POS scores provide valuable management information, and are used for studies into predictor variables. Conclusions: This alignment between SIS, ISP and personal outcomes helps in supporting people methodically in improving their QOL, and provides a Management Information System in which supporting people and improving their quality of life is at the center. Symposium: Advances in quality of life measurement
Quality of Life
The development and use of evidence-based instruments to measure quality of life and enhance organisational performance J. van Loon (jloon@arduin.nl)*, C. Claes & R. Schalock *Arduin Foundation and Ghent University, The Netherlands Aim: As the concept of quality of life (QOL) evolved there came a need for a systematic approach to the assessment of domain-referenced quality of life outcomes. It is important to understand the context within which the QOL concept is used. This presentation describes the framework to conceptualise and measure QOL, provides an example of a QOL questionnaire based on current measurement best practices and demonstrates how evidencebased QOL instruments are used to enhance organisational performance. Method: The development of the Personal Outcomes Scale (POS) provides an example of a QOL questionnaire based on current measurement best practices. Examples are given of how the POS and other instruments are used. Results: A thorough research process resulted in a solid instrument to measure the QOL of people with ID in terms of support outcomes. The POS provides information on actions to enhance an individuals well-being and contributes to evidence-based use of quality of life data. Evidence-based QOL instruments are used in several ways in enhancing organisational performance. Conclusions: The development of the POS, with data on reliability and validity, and the availability of more QOL measurement instruments, set the stage for use of evidence-based work in enhancing organisational performance. Psychometric properties of the Student Teacher Relationship Scale: Measuring caregiver-client relationships A.Velema (a.velema@baalderborggroep.nl)*, J. Roeden, M. Maaskant & L. Curfs *Baalderborg Groep, Hardenberg, The Netherlands Aim: The aim is to investigate the psychometric properties of the Student-Teacher Relationship Scale (STRS) when used for people with ID. The STRS is designed for primary education, but seems to be useful for relationships between persons with ID and their caregivers as well. Method: Client-caregiver relationships were assessed by means of the STRS among two groups of people with ID: (1) 350 persons with moderate/ severe ID and 46 caregivers and (2) 332 persons with mild ID and 108 caregivers. Reliability, factor structures and construct validity of the STRS were analyzed. Results: The original three-factor model of the STRS (closeness, conict and dependency) applied to both groups. The internal consistency, construct validity and test-retest reliability were good in both groups. Conclusions: The STRS is a valuable instrument for assessing the relationship between persons with ID and caregivers. Three strategies for dening, measuring, and improving quality of life J. Gardner (jfgardner@thecouncil.org)* *The Council on Quality and Leadership, Towson, Maryland, US Aim: Diminishing economic resources and decreasing social policy initiatives are forcing greater accountability for quality outcomes in community services for people with intellectual and developmental disabilities. Method: Continuous Council on Quality and Leadership (CQL) research since 1990 suggests three strategies for dening, measuring, and improving quality of life: (1) Identify the critical few indicators that best predict personal health, safety, and security. After examining data from accreditation reviews in 302 organizations, CQL reduced the number of personally dened Basic Assurances indicators from 46 to 23. (2) Assemble an international Delphi Panel exercise, focus group meetings with self-advocates and families, and research ndings from contractors and consultants to identify thirty-four (34) Key Factors and Success Indicators in Person-Centered Excellence. (3) Measure or link organizational or community success in promoting the basic assurances and the extent to which the person-centered excellence practices have promoted personal quality of life for people receiving services and supports with the twentyone (21) Personal Outcome Measures. Results and Conclusions: This presentation will explore the development, application and integration of these three metrics developed and disseminated by CQL and implemented in service delivery systems around the world.
The Supports Intensity Scale and public policy: Using the SIS to match support needs with funding in the United States J. Fortune (jfortune@hsri.org)*, J. Bershadsky*, J. Agosta, D. Smith, L.Teninty & K. Melda *Human Services Research Institute, US Aim: Funding is shrinking while demand is increasing for intellectual disability services. In response, 14 states are seeking ways to make their service systems more efcient and equitable. Establishing assessmentinformed resource allocation practices provides a way to achieve these goals. This presentation describes their plans, methods and SIS results. Method: Individuals with intellectual disabilities are assessed using the Supports Intensity Scale, and are assigned to an appropriate funding level. Meanwhile, the available service array is reviewed and a rate schedule is designed. Finally, a model is calculated so that service recipients in each level are assigned an individualized budget according to their support need. Results: The resulting system aligns individual needs with the resources they need. Conclusions: For years shaped by policy legacy and shifting levels of public and political support, service systems have implemented policy decisions. This context has made policies inefcient, unfair, and inevitably unsustainable. Resource allocation informed by the Supports Intensity Scale provides a means to realign systems to be efcient and fair for everyone.

Symposium: New directions in measuring quality of life Ethnography in QoL research. A case study L. J. Helwig Nazarowa (lydia@helwignazarowa.eu)* & J. S. Reinders *Siza Dorp Groep, Arnhem, The Netherlands Aim: To explore the possibilities of ethnography as a qualitative method in QoL research. Method: Ethnographic study of QoL of clients with multiple disabilities. Results: The case study was designed to explore the possibilities to research the question how direct support staff attempt to work with their clients on their clients personal development. Using participatory observation techniques, the study enabled support staff to discover the quality or lack of it in their own practices, and at the same time provided clues as to how to improve them. On a meta-level, the study shows the central importance of interpretation in direct support work in that most staff action is guided by what a client is understood to ask, or want, or do. Conclusions: Ethnographic methods prove to be very useful in providing data to improve the quality of day-to-day support work of people mutiple disabilities. Methodological pluralism in quality of life research J. Reinders (js.reinders@th.vu.nl)* & L. Helwig Nazarowa *VU University, Amsterdam, The Netherlands Aim: To establish the importance of methodological pluralism in QoL research. Method: Theoretical analysis of the existing literature. Results: Current theories of QoL are usually based on quantitative research methods, even though the literature suggests the possibility of methodological pluralism. The study raises the question of the strengths and weaknesses of numbers about QoL, particularly with regard to comparing outcomes for individuals and/or groups of individuals. Theoretical analysis suggests that (1) quantitative methods are often insensitive to the contextual nature of human experience, and, by implication, of the experience of quality, and that (2) therefore the nature of indicators should be considered in a much more restricted sense. Indicators indicate, they do not prove anything. Consequently, the question what specic outcomes in terms of numbers actually mean in the daily lives of people indicates a need for further inquiry that cannot be met by providing more numbers. Conclusions: Quality of life research can be enriched by developing studies that use designs based on mixed methods. Capability approach in quality of life research J. Reinders (js.reinders@th.vu.nl)* *VU University, Amsterdam, The Netherlands Aim: To discuss the possible contribution of Amartya Senscapability approach to quality of life research. Method: Review and analysis of relevant literature. Results: Current quality of life research works by and large within the framework of a list theory as presented, for example, in the work of Bob Schalock. A problem with this type of theory that has recevied relatively little attention is the compartmentalization of quality of life it entails. Quality indicators are measured for separate domains without an integrating device to relate scores in the various domains. An outline of the capability approach as developed by Amartya Sen is presented in order to see how the it may contribute to overcome this limitation. The key issue in the discussion will be that current list theories tend to present personal development as a separate domain, which is unsatisfactory in view of the actual development that occurs in each of the other domains. Conclusions: It is shown how the capability approach may result in a more dynamic theory of quality of life in that it enables the use of personal development as an integrating perspective to assess the connections between the separate domains in current list theories. Symposium: Gathering family quality of life data
Quality of Life
Comparison of mothers and fathers perceptions of family qualtiy of life I. Brown (ivan.brown@utoronto.ca)* *Faculty of Social Work, University of Toronto, Ontario, Canada Aim: The question of whose voice should be heard when recording family quality of life data has been raised in the academic literature, but has not been addressed empirically. This presentation investigates the question of whether mothers and fathers perceptions of family quality of life differ. Method: Secondary analyses of data collected in three countries contrasts scores of mothers and fathers on the Family Quality of Life Survey 2006. Results: Mothers and fathers reported scores that differed in a number of areas of family quality of life. Several key factors that might help to explain such differences were uncovered in the descriptive variables of the survey. Conclusions: This analysis suggests that mothers and fathers perceptions of family quality of life may differ in some important respects. The question of how best to represent the whole familys perspective is unresolved, but this analysis sets the foundation for inquiry into this question. Participatory evaluation approach Quality of life of people with intellectual disability in Israel D. Roth (danaR@beitissie.org.il)* *Reseach and Evaluaiton, Beit Issie Shapiro, Israel Aim: An inclusive evaluation study of quality of life was conducted with staff and people with ID as full participants to assess satisfaction with residential and leisure services, and to identify potential improvement of services. Method: Forty-six (46) people with ID and 20 staff participated in all stages: adapting evaluation measures, analyses, discussion, conclusions and recommendations. Theme analyses, analyses of variance comparing the 2 groups, and correlations examined level of function and supports needed by people and level of life satisfaction, were conducted. Results: The quality of life questionnaire was found to be internally consistent (Alpha = .7). Signicant differences were found between the clients and the staffs perspectives of QOL. Control and independence were lowest-rated items by the people with ID while social belonging, productivity and general life satisfaction ranked highly. Level of support needed and independence level were signicant in ratings of quality of life. Conclusions: Inclusive evaluation of services and leisure of people with ID adds an important perspective. The approach requires effort and has limitations but gives insights and information which can be missed in traditional evaluation processes. In addition it empowers the participants, involves and gives them responsibilities in problem resolutions. Predictors of quality of life in families that have a child with developmental disabilities B. Isaacs (barry.isaacs@surreyplace.on.ca)* & A. Perry *Surrey Place Centre, Toronto, Ontario, Canada Aim: The purpose of this presentation is to explore predictors of family quality of life. Method: GO4KIDDS is a Canadian team project exploring the health, wellbeing, and social inclusion of school-aged children with severe developmental disabilities (DD) and that of their parents, using several surveys and smaller focused studies. The Family Quality of Life (FQOL) study will involve about 70 families that have children functioning in either the mild or severe range of DD. Of the 44 families seen so far, 53% are 2-parent families and they are quite diverse. The children range in age from 6 to 18; 70% of the children are boys, 48% of whom have autism. Families were interviewed using the Family Quality of Life Survey (FQOLS), a detailed survey examining family quality of life in nine domains (e.g., family relationships, support from services), each in terms of six dimensions (e.g., attainment, satisfaction). Results: Results focus on the contributions of the following factors as predictors of FQOL: SES, age of child with DD, family type (1 vs. 2 parent) and maladaptive behaviour. The dependent variable is parents overall judgments of their attainment and satisfaction with their FQOL. Conclusions: Implications for the understanding of FQOL are discussed.

Symposium: Quality of life enhancement through Special Olympics I Special Olympics participation enhances family well-being: Findings from a national survey J. Kersh (joanne.kersh@umb.edu)*, G. Siperstein & A. Moskowitz *Center for Social Development and Education, University of Massachusetts, Boston, US Aim: While benets of participation in Special Olympics (SO) have been documented for athletes (e.g., Dykens & Cohen, 1996), the value for the family has received less attention. Therefore, this study focused on the parents of SO athletes and their well-being. Method: Participants were 466 parents of SO athletes (aged 821) throughout the United States who took part in an online survey about their involvement in SO, the impacts that SO has had on their children and on themselves, and their well-being more generally. Participants were recruited through state SO programs, and the survey was distributed through program e-mail lists and newsletters. Results: Parents reported positive experiences and high levels of involvement in SO for their children, themselves, and other family members, and perceived considerable value in their involvement. They cited important social and emotional benets and identied SO as a critical source of social support. Parent and family involvement in SO was also associated with parent psychological well-being. Conclusions: We conclude that sport and recreational programming, such as SO, provides young people with IDD and their families with experiences that are critical to the healthy development of the individual and the positive functioning of families. Special Olympics athletes and the World Games experience R. McConkey (r.mcconkey@ulster.ac.uk)*, S. Dowling & D. Hassan *University of Ulster, Northern Ireland, UK Aim: Special Olympics provides year-round training and competition in 32 sports in almost 180 countries, with an estimated 3 million athletes with intellectual disabilities engaged on a regular basis. A particular highlight is the World Summer Games held every four years, most recently in Athens, which was attended by almost 7000 athletes from over 170 countries. This study explored the impact on the athletes of their training and participation in these Games. Method: Quantitative and qualitative data were collected from 56 athletes and 21 coaches from four participating countries Greece, South Africa, India, Costa Rica and across seven different sports. This was done at four time points (at selection, during training, at the games, post-games) using local academics as co-researchers. Results: The training process saw growth in athletes self-motivation and personal responsibility although improvements in terms of sporting skills were harder to discern. Inherent ambiguities in the purpose of the Games were reected in the athletes attitudes to competition and winning, which contrasted with the perspectives and approaches of their coaches which stressed participation. Conclusions: This study gives important insights into how people with intellectual disabilities can gain afrmation through sport. Creating social inclusion through sport: Insights from Special Olympics initiatives S. Dowling (s.dowling22@gmail.com)*, R. McConkey, D. Hassan *University of Ulster, Northern Ireland, UK Aim: In recent years the Special Olympics movement has developed two initiatives to enhance the social inclusion of athletes with intellectual disabilities with their non-disabled peers. Within Europe, Unied Sports is now well-established in nearly 30 countries and Project Unify is soon to be introduced in four countries. This paper examines the impact these projects have on non-disabled youth and aims to identify the processes that underpin greater inclusion of athletes with their peers. Method: Individual and group interviews were held with Unied Sports participants across ve countries and questionnaire data was obtained from school pupils taking part in Project Unify. Results: Four processes were perceived by informants to facilitate social inclusion. These were: 1) the personal development of athletes and partners; 2) the creation of inclusive and equal bonds; 3) the promotion of positive perceptions of athletes and 4) building alliances within local communities. Conclusions: Both projects provide a vehicle for promoting social inclusion that is theoretically-credible in terms of social capital scholarship and which contains lessons for advancing social inclusion in other contexts. Nonetheless, certain limitations are identied that require attention if the ambitions of the projects are to be fully realised.
Quality of Life
Symposium: Quality of life enhancement through Special Olympics II Impact of participation in Special Olympics World Games on athletes, parents and siblings S. Werner (shirlior@mscc.huji.ac.il)* *Paul Baerwald School of Social Work, The Hebrew University of Jerusalem, Israel Aim: Participation in desired personal and social activities is highly important for quality of life. Since 1969 Special Olympics (SO) has provided athletes with learning and intellectual disabilities the opportunity to participate in athletic games. In 2011, Israel sent 84 athletes to the World Games. The current study examines the impact of participation in SO and the World Games on athletes, parents and siblings. Method: Eight SO athletes, nine parents, and six siblings were interviewed using in-depth interviews. Results: Participants stressed the contributions of SO to the athlete including: enhancement of physical health, opportunities for social engagement, independence, and provision of equal opportunities. SO was described as a way of life for the athlete and the entire family that was recruited to help. Parents and siblings reported feeling proud of the athlete, but also being impacted emotionally when watching other athletes. Both parents and siblings spoke of the games providing them with the opportunity to meet others with similar life experiences. These meetings erased differences between countries and joined people based on a common life situation. Conclusions: The impact of participation at the World Games on the quality of life of athletes, parents and siblings will be discussed. Eligibility and classication in the Paralympics: How does this work for athletes with intellectual disabilities? J. Burns (jan.burns@canterbury.ac.uk)* *Canterbury Christ Church University, England Aim: Athletes with intellectual disabilities were disallowed from competing in the Paralympic games after the Sidney 2000 games, due to people without intellectual disabilities cheating. The aim of this paper is to describe the work that has taken place to (1) establish basic eligibility to be registered as an athlete with intellectual disabilities able to compete at paralympic level and (2) to go through the International Paralympic Committee (IPC) classication system to evidence the impact of the disability on the specic sport. Method: The evidence required for conrmation of eligibility will be described alongside a brief description of the work carried out by an international research group who had the task of establishing a model and then testing it to demonstrate how intellectual disabilities impact on sports performance across different events (for London 2012 these are athletics, swimming and table tennis). Results: A robust international eligibility system has been established. About 2,500 athletes are registered and a classication system has been established for each of the three London 2012 events. Conclusions: On the basis of this work the IPC approved athletes with intellectual disabilities to be re-included in the Paralympics and they will be competing in London 2012.

Symposium: Quality of life enhancement through Special Olympics II (continued) Self-esteem and participation in the Special Olympics J. Burns (jan.burns@canterbury.ac.uk)* & C. Watts *Canterbury Christ Church University, England, UK Aim: The purpose of this study was to examine the psychosocial impact of involvement in the Special Olympics. Method: A cross-sectional design was employed comparing two groups of participants with intellectual disabilities: sports-active through the Special Olympics (SO) and non-sport active. One hundred participants completed validated measures of selfesteem, quality of life, stress levels, and social networks. Qualitative data was also collected from SO participants about what they perceived as the benets of involvement in sports. Results: Analysis revealed that higher levels of self-esteem, quality of life, social networks, and lower stress levels were signicantly associated with involvement in the Special Olympics. A logistic regression analysis showed self-esteem to be a good predictor of group membership, with those in the Special Olympics having higher self-esteem. Qualitative responses from the SO group conrmed the social support provided by SO involvement was perceived as an additional benet to the actual sports activity. Conclusions: The ndings provide further evidence of a positive association between sport involvement and increased psychological well-being for people with intellectual disabilities, and suggest such involvement may be particularly valuable for those potentially vulnerable to low self-esteem. The Paralympic legacy: What will it do for people with intellectual disabilities? J. Burns (jan.burns@canterbury.ac.uk)* *Canterbury Christ Church University, England, UK Aim: The aim of this paper is to explore the potential legacies of the forthcoming Paralympics in terms of two dimensions for people with intellectual disabilities: (1) sports involvement and (2) changing attitudes towards people with intellectual disabilities. Method: Original data about the spread and increase of involvement of elite sports people with intellectual disabilities across the world will be presented. In addition, preliminary data will be presented from some experimental research looking at the impact of media representations of elite athletes with intellectual disabilities on implicit attitude change of observers without intellectual disabilities. Results: This data will show that elite sports involvement by athletes with intellectual disabilities is increasing internationally and that the media exposure that the Paralympics brings with it provides a potentially signicant vehicle for social attitude change. Conclusions: The Paralympics presents a unique and under-researched mass international set of activities which potentially opens a range of opportunities to explore our understanding, attitudes toward and reactions to people with intellectual disabilities.
Quality of Life
Symposium:The Family Quality of Life Survey 2006: Convergent and construct validity Comparing interview and questionnaire methods of assessing family quality of life A. Perry (perry@yorku.ca)*, B. Isaacs & O. Weiss *Department of Psychology,York University, Toronto, Canada Aim: This study compared the Family Quality of Life Survey (FQOLS; Brown et al., 2006) to the Beach Center Family Quality of Life Scale (Hoffman, Marquis, Poston, Summers, & Turnbull, 2006). Method: GO4KIDDS is a Canadian team project exploring the health, wellbeing, and social inclusion of children with severe DD, and that of their parents, using several surveys and focused studies. The Family Quality of Life study will involve about 70 families. Of the 44 diverse families seen so far, half are single-parent families. Children range in age from 6 to 18. Seventy percent are boys and 48% have autism. Families were interviewed using the FQOLS, which examines nine domains (e.g., family relationships, support from services), each in terms of six dimensions (e.g., attainment, satisfaction). They also completed The Beach Center Family Quality of Life Scale, a 25-item measure assessing satisfaction with ve domains: family interaction, parenting, emotional well-being, physical/material well-being and disability-related supports. Results: The main results involve correlations of the ve domains of the Beach Center measure with the attainment and satisfaction ratings of the nine FQOLS domains. Conclusions: This study contributes to our understanding of the conceptualization and measurement of family quality of life. Examining the factor structure of the domains and dimensions of the FQOLS-2006 P. S. Samuel (preethy@wayne.edu)* *Wayne State University, Michigan, US Aim: The purpose of this study was to test the construct validity of the Family Quality of Life Survey- Version 2006 by testing the factor structure within each of the nine domains and six dimensions. Method: Data collected from 149 low-income minority families in the mid-west of the USA was examined using conrmatory factory analysis. Results: An examination of the domain structure revealed that eight of the nine domains could be explained by a six-factor structure, although the t of health and nances needs closer examination. A few modications improved the t of the domains of support from others, careers and leisure. A nine-factor structure could explain the t of ve of the six dimension-level models, although the value of the dimension of importance should be reassessed. The t of opportunities, stability and attainment improved well with a few modications. Conclusions: These ndings suggest that some of the items on the survey are redundant and do not contribute to the overall factor structure. Future studies using a larger and more diverse sample is necessary to test the validity of a second order CFA model, which will help in decreasing the length of the survey. Examining the convergent validity of the FQOLS-2006 with Beach Center FQOL Scale A. Carrellas (do9921@wayne.edu)*, P. Samuel, A. Carrellas, K. Lacey & B. LeRoy *Wayne State University, Michigan, US Aim: The purpose of this study was to test the convergent validity of the Family Quality of Life Survey- version 2006 (FQOLS-2006) with the Family Quality of Life Scale and the Family Community Participation Survey (FCS) developed by the Beach Center for Disability, University of Kansas. Method: Data collected from 149 low-income minority families was examined using SPSS 19.0 for correlations between conceptually related domains and individual items. Results: Signicant correlations were found between the FQOLS-2006 domains of health, community interaction, family relationships, support from disability-related services and the Beach Center Domains of physical and material wellbeing, family interaction, parenting and disability support. Other individual correlations at the item level were also examined. We also found that there were moderate correlations between the FQOLS-2006 domains of careers, leisure, and community interaction with the satisfaction with doing things in the community and sense of belonging to the community as measured by the FCS. Conclusions: These ndings suggest that the FQOLS-2006 is measuring concepts similar to the Beach center FQOL Scale and the FCIS, which has been validated and tested in the United States.

Symposium: Family quality of life: Cross-cultural research Family quality of life: Comparison among 16 countries I. Brown (ivan.brown@utoronto.ca)* *Faculty of Social Work, University of Toronto, Ontario, Canada Aim: Family quality of life (FQOL) has emerged as an important theme in intellectual disability (ID). The International Family Quality of Life Project gathers and compares data from numerous countries on families that have a member with ID. Method: Projects carried out in Europe, Asia, Africa, Australia, and North America gathered data using a common instrument (the Family Quality of Life Survey 2006) and entered data on a common SPSS datale. Data across participating countries cannot be directly compared as samples were not matched, but trends across countries were observed for demographic characteristics, and FQOL measures in nine life domains for six measurement dimensions: importance, opportunities, initiative, stability, attainment, and satisfaction. Results: Age of people with ID varied, but all country means indicated moderate communication ability and support needed in many areas of life. All nine areas of FQOL measured were considered important. For all samples, attainment and satisfaction scores were lowest in nancial well-being and support from other people, and were highest for family values and inuence of values. Conclusions: The consistency in the overall results of FQOL measures across several countries suggests that families with a member with ID around the world view their FQOL in similar ways. Quality of life of families with children with intellectual disabilities: Slovenian study M. Schmidt (majda.schmidt@uni-mb.si)* & B. Cagran *Faculty of Education, University of Maribor, Koroska, Slovenia Aim: This study endeavoured to provide data on quality of life for families with children who have intellectual disabilities (ID) in Slovenia. Method: The sample consisted of 44 families with children between 7 and 21 years of age with intellectual disabilities. Twenty-ve families had children with ID who experienced developmental issues and 19 had children with ID and who experienced autistic issues. The data were collected using the FQOLS-2006. We concentrated on the nine specic domains of the family life measure used and recorded data from six measurement dimensions. Inferential statistics analyses included the Friedman test and repeatedmeasures ANOVA. Results: Results indicated that family members rated importance the highest out of all of the quality of family life domains. Specically, stability of health was rated high, while initiative of nancial well-being and leisure and recreation were also rated high. Statisticaly signicant differences exsist between families on health, inuence of values and community interaction. Families with children with ID who experience developmental issues rated all three domains the highest. Conclusions: This research provides data for family quality of life in Slovenia. Our empirical ndings should be complemented by the results of the qualitative analysis of the interviews with family members. Quality of life of family carers from different cultural backgrounds A. K. Bhardwaj (ab437@kent.ac.uk)*, R. Forrester-Jones & G. Murphy *Tizard Centre, University of Kent, England Aim: To identify the quality of life of carers/parents who have children with intellectual disabilities (ID) from south Asian and White communities with a view to understanding differences in service access and family/ community support. Method: Thirty-eight carers (16 White and 22 Asian) were interviewed using a mixed-methods approach including adaptive behaviour scale, family quality of life measure, semi-structured interviews and participant observation. Results: Mothers were the main family carer from both communities. Asian carers reported difculties around access to services, with too little guidance from an early stage and lack of knowledge of the health system. Generally, services were unsuccessful at trying to match specialists speaking the same language with people with ID and their carers. Carers reported that services were not tailored to specic cultural needs of their children. Both White and Asian carers wanted more support from extended family and from their own community. Conclusions: In general both communities of carers were not satised with their overall quality of life. Literature highlighting the barriers that carers have accessing services was further highlighted in this study, as well as the many differences faced by both Asian and White families.
Quality of Life
Symposium: International family quality of life research reports The inuence of family relationships domain on FQOL in Croatia A. ic Rali (zicralic@erf.hr)* & N. Lisak *Faculty of Education and Rehabilitation Sciences University of Zagreb, Croatia Aim: The study examined the family relationships domain as reported in results of the FQOLS Survey that was used in Croatia with families with a member with an intellectual disability (ID). Method: Data collection was conducted in three towns in Croatia: Osijek (eastern part), Varadin (western part) and Zagreb (capital city) using FQOLS (Brown et al., 2006). Participants were parents (N = 51) of children with an ID aged 821 years who attended special schools in the towns. Both quantitative and qualitative data were considered. Results: Croatian families rated the importance of family relationships at the highest level; initiative in family relationships, attainment, opportunities and satisfaction were also rated high. These quantitative results are complemented by qualitative research ndings. Conclusions: These high ratings show that this domain is prominent in the lives of families that have a member with ID in Croatia, and also reafrm the ndings of previous international FQOLS research. Family qualify of life and future perspectives when there is a child or an adult with intellectual disability T. Sgaramella (teresamaria.sgaramella@unipd.it)*, L. Nota, S. Soresi & I. Santise Dipartimento di Psicologia dello Syiluppo e della Socializzazione, Universit degli Studi di Padova, Italia Aim: This study examines family quality of life when a child or an adult with intellectual disability lives in a family, and analyses the relationship between quality of life domains and future time perspective. Method: Twenty families were interviewed using the Family Quality of Life Survey. They also completed the Long Term Direction Scale and the Achievability of Future Goals Scale. Quantitative and qualitative analyses were carried out. Results: Findings showed that families satisfaction and needs varied within the nine quality of life domains in two groups. Specicity of supports needed, and the ability of these families to pursue desired goals were contrasted according to age and severity of disability. Conclusions: The study provides evidence for an association between satisfaction for quality of life, positive attitude toward the future, and optimism in the possibility to reach future goals when a family member has an intellectual disability. Family quality of life of families attending early intervention centres in Spain M. Garcia (mgraciag@ub.edu)*, C. Gin, R.Vilaseca, A. Balcells, J. Mas & N. Baques *University of Barcelona, Spain Aim: To (1) identify priority support areas for families with a child with an intellectual disability (ID) from 0 to 6 years of age attending an Early Intervention Centre (EIC) in Spain, using the Family Quality of Life Scale (CdVF-E); (2) enable professionals and families to jointly select one of the priority needs and design an action plan for all families attending the different EIC to improve their Family Quality of Life (FQoL); and (3) identify content for the training of professionals to improve their practices. Method: We contacted six EIC. Professionals selected all the families with children with ID and asked them to complete the CdVF-E scale. After analyzing the results, we selected one of the priority support areas and designed an action plan for each EIC. The next step was to select content for professionals to improve their practices. Results: The preliminary results indicate: (1) there are some family needs not covered; and (2) it is possible to work with professionals and families in collaboration in the design and implementation of interventions in order to improve the work with families and their children. Conclusions: It is necessary improve FQoL of families with children with intellectual disability in Spain.

Symposium: Quality of life enhancement through policy and practice Persons with intellectual disabilities: A population at risk in Nova Scotia D. Norris (deborah.norris@MSVU.ca)*, K. MacPherson, G. Flowerdew, B. Hennen & D. Poulos *Mount Saint Vincent University, Halifax, Nova Scotia, Canada Aim: The purpose of this research is to gather information on the demographics of the ID population and to better understand the current and future service needs of persons with an ID. The Intellectual Disabilities Service Needs Research Alliance (IDSN-RA) is developing a comprehensive and sustainable database that will help to identify the current and future health and service needs of Nova Scotians living with ID and their families/caregivers. This database will help to improve the quantity and quality of information on persons with and ID and will be utilized for researching, planning, and evaluating services. To date, there is no single database available that coordinates this information. Method: A survey instrument was developed through consultation with multiple stakeholders (including individuals living with an ID and their families). Data collection commenced in late 2009. The survey was administered to 147 adults 19 years and older living with an ID in the central and northern regions of Nova Scotia. Results: General satisfaction with healthcare services but dissatisfaction with housing emerged from analysis as the most signicant ndings. Conclusions: These ndings have implications for the development of advocacy initiatives and programs and policies for persons with ID. Implementing evidence-based practices in quality of life at the macrosystem level M.Verdugo Alonso (inico@usal.es)*, L. Gmez, B. Arias & P. Navas *Universidad de Salamanca, Spain Aim: This paper presents the evidence-based practices on quality-of-liferelated personal outcomes that were implemented in Catalonia and are serving as example for developing evidence-based practices all around Spain. Method: Providers proles were developed by applying the GENCAT Scale to a representative sample of social service recipients within each organization. Specically, quality-of-life-related personal outcomes were assessed for 11,624 service users attending 288 services in Catalonia (Spain). Data were analyzed by means of the classical test theory (CTT), structural equation modeling (SEM), and item response theory (IRT). Results: In general terms, people obtained high scores in qualityof-life-related personal outcomes; however results should be improved in several domains, such as personal development, self-determination, and social inclusion. Conclusions: General results and standards may be used to enhance social and human policies to enhance the quality of life of persons with intellectual disabilities and other groups of people at risk of social exclusion. Recommendations to enhance quality-of-life-related personal outcomes are provided. These recommendations are useful to guide new social policies and enrich quality of life from the macrosystem perspective.
Quality of Life
Symposium: Familiy needs and supports in family quality of life Family Needs and Strengths Assessment: First results of applying this new tool A pilot study R.Vilaseca (rosavilaseca@ub.edu)*, C. Gin, J.Turnbull, A. Summers, M. Gracia, N. Zuna, A. Balcells, C. Chiu, K. Kyzar, J. Mas & H. Xiaoyi *Developmental and Educational Psychology Department, University of Barcelona, Spain Aim: A new tool will be presented The Family Needs and Strengths Assessment (FNA). We are part of a workgroup of researchers with a strong commitment to quality of life for families who have a member with a disability. We believe that in order to meet the needs of the family member with a disability, services must also meet the needs and the strengths of the whole family. We developed this survey so that families who have persons with disabilities can identify their familys needs and strengths. Method: In this pilot study, we apply the survey to a sample group of 80 families with a member with a disability from 0 to 24 years living in Catalonia (Spain), Kansas and Austin (USA), and Taiwan. Results: The main needs of these families have been identied. Many families were successful as well in identifying their strengths and they may use those to help meet their needs. Conclusions: FNA will help families and their service providers work together as partners in celebrating families strengths, meeting family needs, and using strengths to address needs. Services can use this tool to make program decisions to families to improve family Quality of Life. Family quality of life for families on waitlists: Formal and informal supports M. Edwards (meaghan@mukibaum.com)*, N. Baum & B. Isaacs *MukiBaum Treatment Centres, Ontario, Canada Aim: Research suggests that families with a member with ID tend to utilize formal and informal support systems to assist in daily needs. Families unable to access formal supports may rely on informal support such as friends and neighbours. This paper explores the supports used by families who are on a waitlist and as such, unable to access formal supports. Method: Twenty-one families on a waitlist were interviewed using FQOL-S 2006 and 5 additional questions. Qualitative and quantitative analysis comparing families on a waitlist to families in service was performed. Results: Despite expectations based on research in the eld, families on a waitlist reported signicantly lower satisfaction with informal supports than families in service. Qualitative information further strengthened this nding with families on the waitlist reporting isolation and lack of support from friends and neighbours. Conclusions: The results suggested that families on waitlists did not seem to rely upon informal supports when formal supports were unavailable. This is of great concern to service providers since these families may be almost completely without supports either formal or informal, suggesting efforts should be made to create opportunities for meaningful support networks. Examples illustrate the possibilities for enabling supports. The inuence of support from others and service support on family quality of life in Croatia D. Cvitkovic (danielac@erf.hr)* & A. Wagner-Jakab *Faculty of Education and Rehabilitation Sciences, University of Zagreb, Croatia Aim: The study examined support from others and service support domains of families with a member with an intellectual disability (ID) in Croatia as reported on the FQOL Survey. Method: Data collection was conducted in three towns in Croatia: Osijek (eastern part), Varadin (north part) and Zagreb (capital town). Participants were parents of children with ID who attended special schools in those towns. Both quantitative and qualitative data were considered. Results: The domain of support from others was rated the lowest of all dimensions except stability. Croatian families in this research showed low attainment of support from others, low opportunities, and low initiative. The families rated support from others as low in importance, resulting in low satisfaction to the family. Families in this research showed a low level of initiative in the domain of support from services. Nevertheless, they considered support from services as highly important. In all other dimensions opportunities, attainment, stability and satisfaction their ratings were relatively low. These quantitative results are complemented by qualitative research ndings. Conclusions: The ndings on support from others and services indicated a low level of satisfaction and attainment. This shows us the need for development community-based support as a direction for programs and strategies.

Symposium: Quality of life and belonging Belonging Challenges for people with disabilities and their families R. Brown (roybrown@telus.net)* *University of Calgary, Alberta, Canada Aim: This paper explores some of the parameters and indicates some of the major challenges and potential paths to be explored in future studies, along with practices to enhance the individuals and the familys sense of belonging to their neighbourhood and the broader community. Aspects of belonging are the subject of this presentation and the challenges faced both by the individual with disability and the family. Method: Research and practice evidence will be presented that suggests that as the degree of disability increases so the degree of belonging to ones community frequently diminishes often bringing with it exclusion, not just for the individual with intellectual and developmental disability, but also the family as well. Results and Conclusions: Aspects of exclusion and lessening of belonging may at times be regarded as inevitable, yet the variables relevant to improving individual and family connectedness within society merit further consideration. The continuum of being, belonging and becoming is a progressive concept related to both development and inclusion within society. Belonging: Helping people with PMID in residential services to develop a sense of belonging J. Clegg (jennifer.clegg@nottingham.ac.uk)*, K. Baker & E. Baker *University of Nottingham, England Aim: To identify the ways support staff experience and negotiate difculties in providing opportunities for people with PMIDs to experience belonging, and develop a framework to address this. Method: This action research study involved participant-observation over a 6-month period with staff who supported 9 adults with PMID (from a cohort of 38 involved in a campus reprovision project) as they moved into 3 different community homes. Results: Narrative analysis of the participant-observers research diary identied a range of challenges encountered by staff as they attempted to build a sense of belonging with/for their residents. Staff experienced three main types of challenges: (1) evidence of creativity but a general lack of clarity about where to go or what to do; (2) variation in motivation/condence concerning belonging; and (3) brokering community relationships.These results informed the development of a framework to support their attempts to build a greater sense of belonging with/for these severely disabled residents. The framework was shared with staff and its impact evaluated. Conclusions: Inclusion is a policy which is difcult to achieve, particularly for people with PMID. Belonging is a possible alternative for nding places and developing spaces in which adults with PMID can feel condent and secure. Belonging: What does it mean to belong? V. Cobigo (virginie.cobigo@gmail.com)*, A. Mahar & H. Stuart *Queens University, Kingston, Ontario, Canada Aim: The psychosocial experience of intellectual disability has been overwhelmingly associated with social exclusion, stigma, and discrimination. Thus, effective services and supports must increase users sense of belonging to their social groups. In the absence of a clear denition of belonging, it is unlikely that we will be successful in improving the social bonds of persons with intellectual disabilities. This paper aims to present a denition of belonging that will inform service planning and measurement. Method: We extracted and synthesized denitions of belonging published in peer-reviewed papers (19902011), until saturation was reached. Results: Saturation was reached with 40 papers. Five elements appear crucial to the denition of belonging: (1) subjectivity feelings of value, respect and t unique to an individual; (2) groundedness requires a referent group to anchor the subjective feeling; (3) reciprocity shared sense of relatedness and connectedness; (4) dynamism dynamic interplay between environmental enablers and barriers; and (5) self-determination right of the individual to choose to interact with referents. Conclusions: We will present a trans-disciplinary denition of belonging and discuss its implications in terms of service provision and measurement.
Quality of Life
Symposium: Quality of life enhancement through friendships, intimacy, and social relationships Impacting social relationships between adults with I/DD and community members A. Amado (amado003@umn.edu)* *Institute on Community Integration, University of Minnesota, US Aim: Effectiveness of two different approaches to impacting social relationships with community members were compared: (1) staff training, versus (2) direct approaches to community members. Method: Small group homes supporting adults with I/DD were randomly assigned to one of three conditions: (1) staff training for supporting relationships between residents and ordinary community members, (2) direct approaches to community members by an indepedent community-builder; and (3) control group. Staff training consisted of methods previously demonstrated as effective in increasing friendships and relationships between individuals with I/DD and community members. Direct approaches to community members involved identifying community organizations and entities in towns in which indivdiuals lived and making direct requests for inclusion. Results: Both interventions result in social relationships, but the nature of the relationships differ. With staff training, the majority of relationships established are with staff family members and former staff. In the direct approaches to community members, relationships are drawn from a wider context, including community service organizations and faith communities. Conclusions: There are demonstrated and effective methods to impact not just physical integration but also social relationships of individuals with I/ DD with ordinary community members, and different strategies result in different types of relationships. The relationship priorities and experiences of intimate relationships for people with intellectual disability K. McVilly (keith.mcvilly@deakin.edu.au)*, K. Cook, J. Chui, K. Landy,V. Lee, T. Phan & J.Truong *School of Psychology, Deakin University, Australia Aim: We seek to better understand the interest in and priority for intimate relationships among people with intellectual disability. Method: We interviewed people with an intellectual disability who participated in a social skills and relationships group to investigate their relationship priorities and experiences. Interviews were transcribed and participants participated in a member-checking process to conrm the reliability of the transcription. The data were then subject to inductive thematic analysis. Results: The desire for intimate relationships were a priority for many. This was despite repeated disappointments in attempts to forge and sustain personal relationships. Histories of violence in relationships were regularly discussed. The importance of self-help groups for people with disability were highlighted. Conclusions: People with an intellectual disability value personal and intimate relationships, and many seek partnerships or marriage. However, there are numerous barriers to achieving these aspirations. Self-help and support groups appear to offer some solutions, creating a safe environment in which to explore personal relationships. What can friendship do for inclusion? H. S. Reinders (js.reinders@th.vu.nl)* *VU University, Amsterdam, The Netherlands Aim: To establish the importance of relations of friendship for inclusion. Method: Philosophical analysis. Results: Current conceptions about inclusion focus strongly on empowering individuals. Important as it is, this focus tends to neglect the fact that people with disabilities strongly value a sense of belonging. Looking at the logic of belonging shows that it is an other-dependent value, which indicates that bringing in social relationships into the concept of inclusion seems to reintroduce the notion of dependency that the shift from charity to rights was intended to eliminate. To avoid the negativity attached to charity and benevolence, the notion of friendship proves to be fruitful to enrich current conceptions of inclusion. Conclusions: Friendship is a powerful notion to stimulate the development of richer conceptions of inclusion by pushing inclusion beyond the political into the social and cultural domains.

Symposium: Quality of life and inclusion Social inclusion in the local community: What is important? Barriers and facilitators for social inclusion in the local community for persons with an intellectual disability A review of the literature T. Overmars-Marx (T.Marx@vilans.nl)*, M. M. L.Verdonschot, H. P. Meininger & G. C. F.Thomse *Vilans, Utrecht, The Netherlands Aim: To identify important barriers and facilitators for social inclusion in the local community for persons with an intellectual disability. Method: A review of the literature was conducted for the period of June 2000 to June 2010 in the databases Pubmed and Socindex. Results: This review identies barriers and facilitators for social inclusion in the local community on ve domains: (1) individual characteristics, (2) informal networks, (3) professional care and setting, (4) neighbourhood characteristics and (5) government policies. Important barriers distinguished in the literature were maladaptive behaviour, lack of skills, tense relationships with neighbours, caring-role staff, and not feeling accepted. Several facilitators were found like social and practical skills, social support, positive contact neighbours, positive staff attitudes, small-scaled living, feeling welcome, physical awareness activities and policies focused on community care. Conclusions: Individual skills related to social inclusion in the local community can be supported by staff and relatives. Local authorities can encourage social inclusion by creating opportunities for activities. The attitudes of neighbours are inuenced by the staff and people with ID themselves. These (and many more) relations show the interaction between the domains and give insight in the dynamic process of social inclusion in the local community. Evaluation of the factors and components of societal integration of adults with congenital physical disabilities O. Hetzroni (hetzroni@edu.haifa.ac.il)* & R. Peled *Faculty of Education, University of Haifa, Israel Aim: The study investigated integration into the community from the unique perspective of adults with physical disabilities and constructed a model including factors and elements related to quality of life and integration. This presentation will present research ndings, and provide the model depicting the ties between elements and factors related to integration and quality of life. Method: A mixed research method was used, including personal and group interviews followed by a questionnaire lled out by 120 adults with congenital physical disabilities. Results: Results demonstrate that integration was correlated with school type, army service, and education. Type of residence was found to be correlated to independence, quality of life, and self-capability. No correlation was found between employment and personal perception of quality of life and integration. Differences were found between objective and subjective physical indexes, whereas the objective index was found to be related to active participation and feeling of independence while the subjective index was found to be related to parental relationship, personality characteristics, type of schooling, and social integration. Conclusions: These ndings demonstrate the need to identify the subjective as well as the objective perspectives of individuals with disabilities. Community participation of people with intellectual disability is hindered by a lack of problem-ownership M. Cardol (m.cardol@nivel.nl)* *Netherlands Institute for Health Services Research (NIVEL) Aim: To dene environmental factors and good practices which present possibilities for community participation of people with intellectual disability (ID) from three perspectives: people with ID, professional caregivers, and social policy makers. Method: Differences between municipalities in the participation of 500 people with ID were identied using a quantitative multilevel analysis. In six municipalities in the Netherlands (three high- and low-scoring municipalities, respectively) 18 persons with ID were interviewed by peers about their participation, successes, and needs. Further, 14 caregivers and six policymakers were interviewed about their attitudes and strategies related to community participation of people with ID. All interviews were transcribed verbatim and analysed using a constant comparative approach. Results: A number of environmental factors clearly provide opportunities for participation. For example, people with ID create possibilities for social contact by staying at bus stops. Professional staff often do not know how to create possibilities for participation in the community. Social policymakers do not see themselves as responsible to realize participation, but want to provide the right conditions. Conclusions: The importance of community participation of people with ID is shared. Environmental and local factors can make the difference. Nevertheless, realization is hindered by a lack of problemownership and collaboration.
Quality of Life
Symposium: Family quality of life: Context and application Ethical guidelines and policy concepts as a means to enhance family quality of life R.Turnbull (rud@ukans.edu)* Beach Center on Disability, University of Kansas, US Aim: This presentation focuses on systemic factors in terms of ethical guidelines and policy core concepts that need to be embedded and operationalized in order to create a context for the enhancement of individual and family quality of life. Method: An ecological theoretical perspective of family quality of life is taken. Although the research that is highlighted is on ethical guidelines and policy concepts across the lifespan within the disability eld, thisi presentation hones in on these systemic factors at the early childhood lifespan stage. Results: The ethical guidelines are family as foundation, dignity, and community. Sample core concepts include autonomy, family capacity development, individualized services, natural environment, and service coordination. Conclusions: Ethical guidelines and policy core concpets can be taught to practitioners to ensure that ethics and policy become elements of making and implementing wise decisions related to evidence-based practices. Early childhood professional development as a means to enhance family quality of life A.Turnbull (turnbull@ku.edu)* Beach Center on Disability, University of Kansas, US Aim: This presentation describes a new early childhood professional development program, Early Years, that is designed to enhance family quality of life outcomes as well as child development outcomes. Method: The presentation highlights the development and design of the modules and mentor coaching as well as summarises eld test results from statewide implementation. Results: Early Years has two major components online modules and mentor coaching. The modules and the approach to coaching are grounded in adult learning theory, particularly transformative learning theory and wisdom theory. Early Years conceptual framework operationalizes evidence-based practice as a decision-making process that merges ethical guidelines, policy concepts, best available research, and experience-based knowledge. It then guides practitioners to take into account contextual factors including child, family, practitioner, and program considerations. Early Years focuses on a primary service provider model and places strong priority on incorporating family and child support within natural environments. Conclusions: The modules and mentor coaching are supported by the led test results from state-wide implementation. How to prevent school violence toward students with intellectual disabilities in inclusive school settings: A qualitative inquiry J. Park (jpark@ewha.ac.kr)* *Ewha Womans University, Korea Aim: The purpose of this study is to investigate the reality of school violence towards students with intellectual disabilities (ID) in order to nd ways to prevent this phenomenon. Method: Ten students with ID who were exposed to school violence, their families, and the special educators who taught them at the time of the violence participated in the study. In-depth individual interviews were conducted for data collection and the data were analysed using the constant comparative method. Results: Several themes emerged from the analyses, including triggers, roles of adults, prevention strategies, and coping strategies. Conclusions: Students with intellectual disabilities are more vulnerable to school violence than any other subgroups in inclusive school settings. The role of adults, administrative support, and systematic instruction are crucial in effective prevention of, and proper coping with, school violence toward students with intellectual disabilities.

Symposium: Quality of life enhancement through social networks and social interaction Professionals and inclusion M.Verdonschot (m.verdonschot@vilans.nl)* & H. R.TH. Krber *Vilans, Utrecht, The Netherlands Aim: Working on the support paradigm requires a different kind of professionalism. The aim of this qualitative study was to explore important characteristics for support staff working according to the support paradigm (specically on improving social inclusion) and to design a toolkit around promoting social inclusion. Method: Interviews were conducted with persons with intellectual disabilities who had succeeded in building a good life in society, with valuable roles and contacts. Their support staff were also interviewed. Interviews were analysed qualitatively and discussed in a focus group with participants. Results: Important success factors for supporting a person with a disability towards inclusion are, for example ,a normative reective value orientation of support staff, adequate working conditions (like trust of management, learning opportunities, etc.), and the ability to use adequate strategies and working methods to improve inclusion. Based on these ndings a toolkit was designed with background information, videos, and e-learning modules. Conclusions: General aspects for a good professional, a normative reective professional, are important ingredients for successful support towards inclusion. A toolkit with a learning module on normative-reective professionalism and information on best practices and strategies to work on inclusion could provide an important basis for promoting social inclusion. Social interaction for adults with severe intellectual disability: Finding joy in the moment H. Johnson (h.johnson@latrobe.edu.au)*, C. Bigby, J. Douglas & T. Iacono *La Trobe University, Australia Aim: Adults with severe intellectual disability (SID) have limited communication skills and few opportunities for social interaction. Social interactions are key to developing relationships and enhance possibilities for social inclusion. The aim of this presentation is to describe the types of social interaction that occur between adults with SID and those with whom they have positive relationships. Method: There were six participants with SID and 57 people with whom they had positive relationships who were family members, paid workers and people with an intellectual disability. Data were drawn from eld notes, transcriptions of interviews, the rst authors journal and relevant published literature. The data were analysed using the grounded theory method. Results: Social interaction comprised a process termed sharing the moment, in which participants derived pleasure from having fun together and hanging out. Having fun together was routine or comedic in nature. Hanging out involved less intense interactions that involved contact or just being in someones presence. Conclusions: Relationships that involve mutual satisfaction occur between people with SID and some of their network members. Spending enjoyable time together in specic types of social interactions may supplement paid worker job satisfaction and increase opportunities for social inclusion by people with SID. Social networks of people with ID from different cultural backgrounds A. K. Bhardwaj (ab437@kent.ac.uk)*, R. Forrester-Jones & G. Murphy *Tizard Centre, University of Kent, England, UK Aim: This study mapped the social networks, social support, barriers, expectations and wishes of people with ID from south Asian communities with a view to understanding differences in their social inclusion, structure and interaction compared to white communities. Method: Forty-seven people with ID (24 White and 23 Asian) were interviewed using a mixedmethods approach, including the social network guide, adaptive behaviour scale, semi-structured interviews and participant observation. Results: There were differences in the level of abilities between the two communities, as well as total size of social networks and network membership for people with ID: Asian participants had more family members and fewer day centre/ club members, while white participants networks included more service users. Two emerging themes included; (1) cultural differences in regards to attending religious activities, family, and moving on, and (2) meaningful social, physical, and work activities in that both communities were involved in. Conclusions: Overall differences were seen in social network size, social support, and membership between Asians and white communities. Barriers (cultural, structural, systematic, assessment, and bureaucratic) outlined in previous research on south Asians were replicated. Symposium: Quality of life: From student to adult
Quality of Life
Self-determination of Chinese students with intellectual disabilities and quality of life: Conceptualisation, measurement, and inuencing factors M. Wang (mwang@education.ucsb.edu) & S. Xu University of California, Santa Barbara, US Aim: This study was focused on collecting both qualitative and quantitative data to explore issues regarding conceptualisation, measurement, and inuencing factors of self-determination (SD) of Chinese students with intellectual disabilities (ID). Method: A Chinese version of the SelfDetermination Survey was developed and eld-tested. Data of 244 Chinese students with mild or moderate ID were collected and analysed by using exploratory factor analysis and MANOVA. Follow-up interviews with the parents of the Chinese students with ID were also conducted to explore the parents perspectives of inuencing factors of SD. Results: The results show that there are different factor structures in the three subscales of the Chinese Self-Determination Survey and that signicant differences of three subscale means of the survey are found between Chinese students with ID in terms of their personal and family characteristics. Interview data suggested that SD of Chinese students with ID is affected by the factors such as family environment, school environment, and community integration. Conclusions: Both similarities and differences of SD conceptualisation and measurement of Chinese students with ID are identied in comparison with American students with ID. Cultural aspects of self-determination conceptualisation and measurement and its relationship to QOL are further discussed. Family quality of life of young adults with Down syndrome transitioning from school to post-school K.-R. Foley (kittyf@our.ecu.edu.au)*, S. Girdler, J. Bourke & H. Leonard *Edith Cowan University,Western Australia, Australia Aim: To describe family quality of life of young adults with Down syndrome transitioning from school to post-school, and explore the relationship with the young persons post-school day occupation. Method: Questionnaires (n = 197) were collected from families of young adults with Down syndrome aged 1529 years. Information about the young adults functioning, day occupation, and family characteristics were collected. The Beach Centre Family Quality of Life Scale was used to measure family quality of life. Results: Young adults were still at school (n = 30) or attending post school day occupations (150): open employment (n = 38), training (n = 16), sheltered employment (n = 59), or attending an alternatives to employment activity (ATE)(n = 37). Better family quality of life was reported by families of those young adults attending open employment (107.15 SD 13.62) or training (102.91 SD 18.85) compared to those attending sheltered employment (94.91 SD 16.01) or an ATE activity (93.23 SD 22.56) (p = 0.0017). The effect remained in a logistic regression adjusting for functioning, behaviour, and family income (OR 1.05, p = 0.013). Conclusions: Preliminary analysis has revealed that families of young adults attending open employment or training report a higher quality of life than families of young adults in sheltered employment or ATE, even when adjusting for confounding variables. Young adults with intellectual disabilities negotiating adulthood A. Kittelsaa (anna.kittelsaa@samfunn.ntnu.no)* *NTNU Social Research, Trondheim, Norway Aim: This study focuses on how some young adults with intellectual disabilities experience their daily lives and how they construct their selfunderstanding. One important topic in the discussions with the participants was what being an adult means. Method: Participant observation, eld conversations, and interviews have been used in order to study participants in their daily lives at home, at work, and in their leisure time. Results: The participants present themselves as adults using traditional understandings of adulthood such as independence, competence, and autonomy. In so doing, they highlighted areas where they are able, and avoided areas where they lack skills or do not live up to common expectations about adulthood. Conclusions: When young individuals who are labelled as having intellectual disabilities defend their right to be perceived as adults they do so against commonly-shared ideas that they are eternal children or people in life-long transition between childhood and adulthood. The paper will discuss the discrepancy between the participants self-understandings and stereotyped opinions about who they are.

Symposium: Quality of life enhancement through sexuality and intimacy Talking about sex with people with intellectual disabilities J. Stoffelen (joke.stoffelen@maastrichtuniversity.nl)*, D. Schaafsma, G. Kok & L. Curfs *Gouverneur Kremers Centrum, Maastricht University, The Netherlands Aim: When considering sexuality, people with intellectual disabilities have an important contribution to make. The importance of listening to their stories cannot be underestimated. This study describes the ideas and experiences of people with intellectual disabilities on sexuality. Method: The study uses Nominal Group Technique (NGT) to explore the views of people (20) with mild intellectual disabilities on sexual needs and issues. NGT involves four steps: silent generation of ideas, round robin recording of ideas, clarication of ideas, and ranking of ideas. Through drawings with the story of Sanne and Tom, they were able to explore their experiences and ideas on sexuality. They were able to answer questions like: What are their needs? What are their problems? Results: NGT is acceptable and even enjoyable for the participants. People with mild intellectual disabilities are capable of expressing their views, needs, and barriers on sexuality, and should be asked to do so. The answers of participants will be presented. Conclusions: We conclude that NGT is an effective and acceptable methodology in enabling people with intellectual disabilities to generate their views. Identifying factors that inuence the sex education of people with intellectual disabilities by direct-care staff D. Schaafsma (Dilana.Schaafsma@maastrichtuniversity.nl)*, G. Kok & L. Curfs *Governor Kremers Centre, Maastricht University, The Netherlands Aim: Sex Education (SE) for people with Intellectual Disabilities (PWID) is necessary. However, it remains unclear which factors determine the success of SE for this group. In the Netherlands, SE programs have been developed with the direct-care staff as sex educators. However, no information is available about whether or not this is effective, and whether this approach is suitable for the daily activities of the direct-care staff. Method: To nd answers to these questions, we conducted 10 interviews with staff, and consequently designed a questionnaire based on the outcomes of these interviews, as well as existing literature. Results: Qualitative results show that: (1) SE is done reactively, and not proactively even though most SE programs are intended for proactive use; (2) staff members hardly used SE materials, and generally provided information on the subject verbally; and (3) staff members reported they frequently overestimated PWIDs capabilities and knowledge. On the positive side, staff members expressed positive attitudes towards the sexuality of PWID and thought it to be important to sexually educate them. Quantitative results will be presented at the conference. Conclusions: The importance of SE programs will be discussed with results of this study in mind. Providing spiritual supports for persons with intellectual disabilities G. Kowalski (gkowalski@stritch.edu)* *Cardinal Stritch University, Milwaukee,Wisconsin, US Aim: Persons with disabilities have both religious and spiritual needs and gifts. Communities and individuals support persons with intellectual disabilities by recognizing and meeting those needs as well as enabling the use of those gifts. Providing both physical access and integration is a means to this end. Today, in addition, emphasis is being placed on seeing spiritual expression and spiritual supports as a human right. Method: This presentation will raise three questions regarding the provision of spiritual supports. These questions are focused on whether a spiritual community is welcoming; whether it is engaged in outreach, and whether it is inclusive. Results and Conclusions: Answers to these questions provide a basis for action. Symposium: Quality of life in health and rehabilitation
Quality of Life
Self-reported health in people with mild intellectual disability: A pilot study B. kerstrm (bengt.akerstrom@miun.se)* *Department of Health Sciences, Mid Sweden University, Sweden Aim: To investigate the function and reliability of the SF-36 Health Survey in measuring self-reported health in people with mild intellectual disability. The focus was on whether the instrument could be used with no modication, or if needed, what necessary modications would be required in order to make the instrument reliable, useful, and possible to respond to for the respondents. Method: Adults 21 years and older (n = 30) with a mild intellectual disability (IQ 5570) were recruited from the service organization for intellectually disabled in a town in the northern part of Sweden. Each person was interviewed with the SF-36 Health Survey and notes were taken on clarications, examples or other forms of support the interviewed person needed in order to understand the questions. For reliability purposes three randomly-selected questions were posed a second time during the interview. Results: The study was conducted until spring 2012. Results will be presented according to ndings related to reliability and possible needs, if any, for help and support in understanding and answering the survey. Conclusions: Results can give an indication of under which circumstances the survey will be useful and reliable, and a possible basis for larger studies for establishing group norms. Quality of life and pharmacotherapy for people with intellectual and relational developmental disorders M. Bertelli (mbertelli@crea-amg.org)*, D. Scuticchio, M. Rossi, M. Piva & A. Bianco *CREA (AMG Research and Evolution Centre), Firenze, Italy Aim: Quality of Life (QoL) is a cornerstone in person-centred planning and outcome evaluation of most interventions for people with intellectual developmental disorders (IDD) or autism spectrum disorders (ASD). These groups are frequently prescribed psychoactive drugs. The present paper aims at reviewing the literature regarding the consideration of generic (whole-person) QoL in the outcome assessment of pharmacological interventions in the above-mentioned populations. Method: A systematic review of the last 10 years of international literature was conducted. Titles and abstracts of identied articles were checked for eligibility and relevance before being examined to produce organising criteria. Results: QoL was included as an outcome measure in only a few studies. Not one of these measures was based on a generic model. Authors who conducted a pioneering study on antipsychotics indicated potential key differences between rst and new generation compounds. New instruments are being validated to overcome time-consumption, which resulted to be the main limit in daily use. Conclusions: Despite lack of data, QoL seems to be a useful outcome measures in pharmacotherapy of people with IDD and ASD. It relates with the staying on treatment and the self-perception of effectiveness. Broken lives Rehabilitation of people with traumatic brain injury (TBI) L. J. Helwig Nazarowa (lydia@helwignazarowa.eu)* & R. Hoogma *Siza Dorp Groep, Arnhem, The Netherlands Aim: To discuss differences between intellectual disabilities (ID) and traumatic brain injury (TBI). Method: Philosophical analysis. Results: In The Netherlands many people with multiple and complex neurological disorders, among which TBI is the most prominent, nd themselves in nonspecialized service environments. The discontinuity with their previous lives makes their experience and that of their families signicantly different from that of people with ID. More than most people with ID, people with TBI suffer from the physical and mental conditions involved in their life change. The continuation of their lives after the life-changing event in these environments shows the interface between cure and care as an inevitable part of their condition. This indicates the need for a sophisticated form of service provision. Conclusions: The reality of many of people with TBI, however, is that they nd themselves in environments specied in the practice of care, such as residential services for people with ID. As a consequence, questions about QoL in these environments frequently receive answers more properly at home in the world of ID than in that of TBI.

Symposium: Qualtiy of life and self-control Everyday life for young adults with intellectual disabilities in public and private spaces C. Kjellman (cecilia.kjellman@hh.se)*, S. Hgdin, M.Tideman & . Wengelin *Halmstad University, Halmstad, Sweden Aim: Knowledge about everyday life for young adults with intellectual disabilities (ID) is limited. To have power over ones home is not a given for a young adult with ID. Social norms that relatives, staff, authorities, and others have, and build their actions on, when they consider someone as grown up inuence young adults with ID and the possibilities for them to decide how ofcial and private spaces shall or can be used. Method: This presentation considers: Which places are accessible? What restrictions and possibilities inuence options for young adults to create contact with others? Where can contact be allowed to take place? Questions like these are asked in order to understand if, and how, individuals with ID can have inuence in their everyday life when their own home is within the center for the research. Results and Conclusions: The home for a young adult with ID is also someone elses place of work and there are regulations and norms that have to be considered when seeking to understand the possibilities within everyday life. The research project will use time geography to understand the everyday life of a young adult with ID when trying to live a grown-up life. Increasing effective decision making in individuals with intellectual disabilities L. Hickson (lh76@columbia.edu)* & I. Khemka *Teachers College, Columbia University, New York, US Aim: Personal safety is a key aspect of quality of life. However, individuals with intellectual disabilities (ID) are at heightened risk for victimization, exacerbated by their limited decision-making (DM) skills. To address this, we conducted a series of studies with two aims: (1) to understand the DM processes of individuals with ID; and (2) to develop interventions to increase effective DM in individuals with ID (e.g., Khemka, 2000; Khemka, Hickson, & Reynolds, 2005). Method: This paper focuses on two randomized-controlled studies. In Study One (Hickson, Khemka, Golden, & Chatzistyli, in preparation), the ESCAPE-DD Curriculum was evaluated with 58 adults with ID. In Study Two (Khemka, Hickson, Zealand, & Mallory, in preparation), the PEER-DM Curriculum was evaluated with 28 adolescents with ID and other developmental disabilities. Results: Subjects who received ESCAPE-DD exhibited signicantly more effective DM than subjects in a control group in response to vignette situations involving abuse. Subjects who received PEER-DM exhibited signicantly more effective DM in situations involving peer pressure. Conclusions: The effects of teaching research-based DM strategies are examined in terms of their implications for enhancing the personal safety and quality of life of individuals with ID. Staff understandings of abuse and poor practice in residential care and supported living services for adults with intellectual disabilities R. Fyson (Rachel.Fyson@nottingham.ac.uk)* & A. Patterson *University of Nottingham, England Aim: To examine the extent to which care and support staff share a consistent understanding of what constitutes poor practice and what constitutes abuse in relation to their work with adults with intellectual disabilities. Method: Sixty semi-structured interviews were undertaken with care/support staff and frontline managers in residential care and supported living services for adults with intellectual disabilities across England. Each interview included asking respondents to categorise ten vignettes of staff-service user interactions as acceptable practice, poor practice or abuse. All interviews were audio recorded, transcribed in full, coded using Nvivo software, and subjected to thematic analysis. Results: There was little overall consistency in respondents categorisations of the vignettes. Although some vignettes achieved a more consistent response than others, every vignette was perceived as belonging in every available category by at least one respondent (i.e. every vignette was perceived by some people to be acceptable practice, by others as poor practice and by others again to be abuse). Conclusions: The ndings suggest a need for clearer guidance for frontline staff regarding abuse and poor practice, in order to improve the quality of their practice and to ensure that when abuse occurs it is reported to the appropriate authorities. Posters:
Quality of Life
Feelings and friendships: A study of autism, empathy and relationships A. Carrellas (ann.carrellas@wayne.edu)*, P. S. Samuel & B. W. LeRoy *Developmental Disabilities Institute,Wayne State University, Michigan, US Aim: We postulated that low levels of empathy impair the ability of individuals with autism spectrum disorders (ASD) to form and maintain social relationships, which leads to social isolation, loneliness and depression. The purpose of this study was to test if empathy can mediate the effect of the severity of autism on social functioning. Method: Web-based survey data was collected from 99 participants. The study was approved by the Institutional Review Board of a university. The data was analyzed using SPSS 19.0. A multivariate path model was specied using AMOS 19.0 to test our hypotheses. Results: Severity of autism had a signicant inverse effect on the level of empathy ( = 0.67). Empathy had a signicant effect on the number of close friends ( = 0.39). The number of close friends in turn had had a signicant but inverse effect on the extent of loneliness ( = 0.29) and the severity of depression ( = 0.31). Conclusions: These ndings support the conceptualization that empathy does mediate the relationship between autism, social isolation, loneliness, and depression. Explicit teaching and support of empathy and friendship skills would be helpful individuals who have ASDs to assist them in forming social connections and close friendships. Utilizing photovoice as a method to elicit self-reection in adolescents with developmental disabilities J. Christensen (julie_christensen@urmc.rochester.edu)* *University of Rochester, Rochester, New York, US Aim: Including people with developmental disabilities (DD) in the research process is important to ensure that services and interventions match needs and interests. However, there are methodological challenges to engaging this population, including the concern that limited social and/or cognitive skills associated with DD may impair their ability to communicate thoughts and experiences (Lewis, 2004). This study aims to test the feasibility of photovoice (Wang & Burris, 1997) as a method to elicit self-reection in adolescents with DD. Method: Adolescents with DD, from an inclusive recreation program, participated in a 7-step photovoice project. Participants were taught to use a digital camera and provided the opportunity to photograph their experiences within their program setting. The photographs were used to guide individual interviews, and participants were encouraged to describe their experiences in their own words. Results: Participants were able to articulate their desires for recreation programming, and were able to reect on both positive and negative experiences within their current program. Conclusions: Photovoice shows promise as an effective method for adolescents with DD to share their personal insights and expertise with the researcher in a systematic and meaningful way, and allowing them to take an active role in the research process. Assessing quality of life in elderly people with disabilities L. E. Gmez (gomezlaura@uniovi.es)*, M. A.Verdugo, B. Arias & P. Navas y A. Rodrguez *Universidad de Oviedo, Oviedo, Spain Aim: To test the psychometric properties of the FUMAT Scale designed to be used to assess quality of life in elderly with disabilities. Method: The development of the scale was done through an exhaustive review of the literature, construction of a pool of items, and assessment of their importance, observability, and suitability by a panel of experts. The FUMAT Scale is an objective instrument composed of 80 questions about the quality of life-related personal outcomes. They were all drafted as statements using the third-person and were randomly arranged around the eight domains proposed by Schalock & Verdugo (2002). The answer format was a frequency scale with four options. The participant group was made up of 80 Spanish elderly people with disabilities. Results: Reliability was veried in terms of internal consistency. Evidence of validity based on content, convergent and discriminant evidence are provided. Conclusions: The FUMAT Scale makes a signicant contribution to the study of quality of life in elderly people with intellectual disabilities as it is an instrument that is sensitive to changes that will enable us to make a valid evaluation of personal outcomes as a criterion for identifying needs and designing interventions.

Posters: Perceived needs and quality of life in the ageing process of persons with intellectual disabilities L. E. Gmez (gomezlaura@uniovi.es)*, A. L. Aguado, M. A. Alcedo, P. Sols & A. Payo *Universidad de Oviedo, Spain Aim: The aim of this poster is to analyze quality-of-life-related needs and demands of people with intellectual disabilities (ID) in the process of ageing, and their relatives and professionals working with them. Method: A qualitative descriptive design using focus groups was used to collect data. Four groups were chosen among key agents from two different centers providing human services to people with ID. One group was composed of persons with ID (n = 10), the second one was composed of their relatives (n = 11), and the last two groups were composed of professionals (n = 7; n = 13). Data were analyzed using the software Atlas.ti that allows encoding of large bodies of textual, graphical, audio, and video data, and identies emergent themes or categories once the transcriptions are made. Results: Many parallels between the three kinds of participants were found, with the concerns about social services and health being two of the biggest concerns for all groups. Conclusions: Some suggestions for the enhancement of care resources for elderly people with ID are presented. Stigmatization, discrimination and management of a spoiled identity F. Guenauer (franziska.guenauer@hu-berlin.de)* *Humboldt Universitaet zu Berlin, Germany Aim: On 26 March 2009 the United Nations Convention on the Rights of Persons with Disabilities came into effect in Germany, endorsing inclusion. Nowadays there are enchanting reports about successful inclusion, but there are also reports on stigmatization and teasing or even bullying and hate crime against people with disabilities. Method: Using an ethogragraphic methodology, in connection with grounded theory, I analyzed the experience of 20 women with learning disabilities. Some were hindered or excluded by their social environment or by social inequality, and experienced becoming stigmatized, bullied or teased. Several women showed characteristics which t the description of a typical victim of violence as described by the WHO. Results: These experiences inuenced their behaviour and their way of participating in society. In addition to that, the women reported very different strategies for dealing with this. Some women reacted with avoidance, but there are some who have found ways to counter. Conclusions: By analyzing these cases carefully I identied different ways of managing a spoiled identity (Goffman 1963: Stigma) and I found factors in the womens life stories which helped them to strengthen their resilience. Prevalence and trend analyses of domestic violence against people with disabilities J-D. Lin (a530706@ndmctsgh.edu.tw)*, L-P. Lin, C-L. Wu, C-D. Li & F-Y. Kuo *School of Public Health, National Defense Medical Center, Taipei, Taiwan Aim: This study analyzed the reported prevalence of domestic violence in people with disabilities over the years 20062009. Method: National reported data were used. Results: Results showed the annual reported prevalence of domestic violence victims in people with disabilities as slightly lower than the general population. However, the reported rate changed signicantly in victim number and rate (per ten-thousand) over different years: 1,260 (12.84), 1,725 (16.90), 2,163 (20.79) and 3,157 (29.48). People with voice or speech disabilities, chronic psychosis and intellectual disability were the highest prevalence groups among the disabilities. Those with chronic psychosis, intellectual disability, vision disability, hearing disability and multi-disabilities showed signicant increases in the annual reported rate over the period of 20062009. Finally, we found the increase in the average annual reported prevalence rate of domestic violence in people of disabilities was 3.7 times of the general population (9.79% vs. 36.08%), with intellectual disability (41.52%), vision or speech disability (38.59%) and chronic psychosis (37.96%) being the disability types with the most increase during the period of 20062009. Conclusions: The present study suggests health and welfare authorities should play vital roles in identifying and providing appropriate services for people with disabilities who encounter domestic violence. Posters:
Quality of Life
Characteristics, importance and implications for professionals of romantic relationships as described by people with intellectual disabilities (ID) living in couples R. Neuman (rann@kfartikva.org.il)* & S. Reiter *Kfar Tikva, Kiryat Tivon, Israel Aim: The aim of the present research was to: nd out how romantic relations are experienced and perceived by people with intellectual disabilities (ID) living as couple; to learn about the characteristics, and meaning of romantic relations as seen through their own eyes; to get to know the obstacles and difculties they have in creating and maintaining such relationships; and to get feedback from them regarding the existing and necessary supports. Method: The current study applied a qualitative paradigm. Using semi-structured interviews, 40 in-depth interviews were conducted with 20 couples with ID. Content analysis was performed to analyze the data. Results: From preliminary results it appears that people with ID stress the signicance and great value of romantic relationships to their lives. They emphasize the great impact romantic relationships have on their quality of life and self-image. They made a clear distinction between romantic relationship and friendship. Fewer remarks were made regarding difculties and about the help needed to maintain such relationships. Conclusions: We should enable and support them while they experience what should be regarded as a basic need. The implications for education are that teaching relevant social skills at a young age is important. New technologies and people with intellectual disabilities: An alternative to improve quality of life L. Nieto (lnieto@udc.es)*, B. Groba,T. Pousada, J. Pereira & J. Pintos *Universidad de A Corua, Spain Aim: To implement an intervention program through Information and Communication Technologies (ICT) in a group of people with intellectual disabilities, tailored to their needs, abilities and interests, to determine whether new technologies have some effect on personal autonomy and quality of life. Method: This project has been carried out in the Association for Persons with Intellectual Disabilities of Galicia, with 18 people with mild or moderate intellectual disability. It began in November 2010 and ended in April 2012. It included the following phases: Informed Consent procedure; initial assessment; adaptation of computer equipment; design and development of the intervention program; follow-up after 8 months of intervention; provisional results; and, nal evaluation: data collection and analysis. Results: Preliminary results show that there is an effect of the use of ICT in daily living activities, leisure, and social participation. It also shows a signicant improvement in the skills and abilities for new technologies management, and an improvement in the perception of people with intellectual disabilities about ICT and its potential for their use. Conclusions: ICT can be an alternative to the traditional tools and intervention approaches, and can be used as a therapeutic resource which fosters social interaction, communication, learning, or personal autonomy. Dating Violence Awareness: A plain language program for individuals with disabilities M. Stiphout (mstiphout@vecova.ca)* *Vecova Centre for Disability Services and Research, Calgary, Alberta, Canada Aim: The goal of the Dating Violence Awareness Program is to educate individuals with disabilities about: healthy, unhealthy, and abusive relationships; gender and media stereotypes; sexual relationships; how to recognize warning signs of abuse; and how to get help if you, or someone you know, is in an abusive relationship. The program includes six workshop workbooks, a facilitators guide, and educational resources, including a program website and videos. The program was created with input from experts from the domestic violence community, the disability community, and individuals with disabilities. The six workshop topics were chosen based on input collected through focus groups and consultations and rened based on a review of the content by subject matter experts and women with disabilities. Method: The program has been pilot-tested with women with disabilities and in an Adapted Learning Program classroom. Results: The initial ndings of the program demonstrate that the workshops give participants an opportunity to not only learn about relationships and dating violence, but also to talk about these topics in a safe environment. Conclusions: Building this supportive environment fostered learning as well as empowered the women to recognize that they deserve to be treated with respect in all of their relationships.

Posters: Quality of life of adults with intellectual disabilities in Japan M.Tatsuta (din05027@kyokyo-u.ac.jp)*, M. Suzuki, H. Nakaichi, M. Ushiyama, H. Goma & H.Tokoro *Kyoto Kyoiku University, Japan Aim: Recently, quality of life (QOL) of people with intellectual disabilites (ID) is gaining attention in Japan, however there is relatively little research about the QOL measurement and its use. Thus the present study aimed at measuring QOL for adults with ID. Method: The QOL Questionnaire (Schalock,1993) was used. The QOL.Q consists of four subscales which include 40 items on a 3-point rating scale. Interviews were conducted with 30 adults who were belonging to sheltered workshops or agencies. Nineteen (19) people lived with their family and 11 people lived in group homes. The data were analyzed by referring to the Schalocks manual. The mean of the total score of 30 people was 90.40 7.20 (mean SD). The highest mean score was the competence/productivity scale (26.50 2.25), while the lowest one was the social belonging/ community integration scale (17.90 3.01). For example, in response to the question, Do you have friends over to visit your home? 29 people said never and one person said fairly often. Results and Conclusions: It was found that there was a relatively signicant negative correlation between age and the total score of the QOL.Q for males. On the other hand, there was no correlation for females. An eco-behavioral approach to understanding factors associated with the exercise of self-determination R.Ticha (tich0018@umn.edu)* & B. Abery *Institute on Community Integration, University of Minnesota, US Aim: The goal of this presentation is to provide insight into the development and validation of the Self-Determination and Control Opportunity and Response Evaluation System (SD-CORES). This ecobehavioral observation system was developed to assess self-determination (SD) of individuals of all levels of intellectual disabilities (ID), including individuals with the most extensive support needs, in real life situations. Method: This presentation will include information pertaining to interrater reliability, validity using the Minnesota Self-Determination Scales, and sequential analysis results of interactions between direct support professionals (DSPs) and the persons with ID who they support. The direct observational coding system, SD-CORES, is being used in the current study with the Multiple Option Observation System for Experimental Studies (MOOSES) software. The system is installed on electronic touch tablets, allowing for the efcient, simultaneous recording over 10-minute observation periods of duration and frequency data of multiple aspects of SD. Results: The advantages and limitations of this approach will be discussed along with potential implications for the training of DSPs. Conclusions: The results of this investigation will contribute to the understanding of SD-CORES reliability, its relationship to self-report instruments, and the way DSP behaviors affect SD of individuals with ID they support. Posters:
Quality of Life
Supporting people with ID who have a relative with cancer I.Tuffrey-Wijne (ituffrey@sgul.ac.uk)*, N. Giatras, G. Butler & A. Cresswell *St. Georges University of London, England Aim: Most people with ID will be affected by cancer of family or friends at some point in their lives. Their support needs are insufciently understood. This study explored the experiences and support needs of adults with ID who have a relative or friend with cancer to make recommendations for practice. Method: Twenty-two people with ID took part in focus groups and interviews. All participants had experienced a close relative/friend with cancer. The groups were co-facilitated by two co-researchers with ID. Results: Being protected from information negatively affected participants coping. Participants worried about their relative/friends illness and the impact on both the patient and on themselves but had not shared their worries or questions with others. Several participants had become carers themselves. There was a lack of understanding about cancer, and a lack of access to cancer information. The greatest need was for someone to talk to this need was not met by either families or professionals. Conclusions: The needs of people with ID who are a relative/friend of someone with cancer are often overlooked. This group does not ask for support, and therefore pro-active support is needed from professionals. This includes emotional support as well as informational support. Public-private partnerships to improve the health status of people with intellectual disabilities: A model from the United States D. Webber (dwebber@aucd.org)* & A. K. Griffen *Association of University Centers on Disabilities, Silver Spring, Maryland, US Aim: The Association of University Centers on Disabilities (AUCD), the National Center on Birth Defects and Developmental Disabilities (NCBDDD), and the Centers for Disease Control and Prevention, have been collaborating for three years to assess the feasibility of implementing a population-based surveillance system in the United States to capture the health status of adults with intellectual disabilities (ID). The collaboration aims to develop an assessment of quality of life for people with ID that is inclusive of physical/mental health and also the social determinants of physical/mental health. Method: Efforts have included meetings of researchers, federal agencies, advocates and others to identify steps necessary to advance this priority, work through the methodological issues of surveillance with this population, increase visibility of the need, and explore funding and policy opportunities. Results: As a result of these meetings a research effort has been funded by NCBDDD through AUCD to prepare a denition of ID for future data and policy efforts, and to create an accessible data repository. Conclusions: To maintain the momentum of this collaboration, the following recommendations are being made to the eld for further exploration: extend past analyses, pilot state or regional demonstrations, and develop sustainable funding and policy approaches.

Symposium: Community participation and social inclusion Status of research in social inclusion and community participation of individuals with intellectual/developmental disabilities A. Novak Amado (amado003@umn.edu)* *Institute on Community Integration, University of Minnesota, Minneapolis, MN Aim: Presenting a summary of the state of the researching community participation and social inclusion of individuals with I/DD, including how social inclusion is being studied, what is known about outcomes in different areas, and questions that need to be addressed. The following topical arenas will be included: (a) different methods of measuring social inclusion, (b) degree of social inclusion, across different age groups and environments, (c) what factors affect degree of social inclusion (e.g., residence size), (d) degree of inclusion in community settings such as faith congregations and community organizations, (e) approaches to increase social inclusion, and (f) community members attitudes toward social inclusion. Method: A summary of approaches used in various types of studies will be provided, including consumer surveys, staff surveys, interviews, etc. Results: The status of outcome information in these different arenas of research will be presented. Conclusion: Conclusions will be drawn about the status of research, and future research needs. Transition to retirement: Social inclusion and outcomes using the Active Mentoring model R. Stancliffe (roger.stancliffe@sydney.edu.au)* C. Bigby, S. Balandin, N. Wilson & D. Craig University of Sydney Disability and Community Faculty Research Group, Faculty of Health Sciences, Sydney, Australia Aim: Many people with intellectual disability are reaching an age to consider retirement. However, both they and disability staff approach their retirement with anxiety and perceive retirement as a risk to future wellbeing and participation. Methods: Using the Active Mentoring model, we supported 30 older Australians (aged 4572) with a disability to cut down their days of work in disability-specic employment or day programs and begin to develop an active, inclusive retirement lifestyle. As an alternative to work on one day per week, participants took up volunteering opportunities or joined mainstream groups in their local community with the support of trained mentors from the group. Matched controls continued to work as usual. Results: Almost all intervention participants joined mainstream volunteering opportunities or community groups which they continued to attend beyond follow up at six months. We report outcomes for intervention and control group participants, including life events, depression, loneliness, social dissatisfaction, health-related quality of life, social contacts, work hours, and the types of groups joined. Conclusions: Social inclusion was enhanced through participation in mainstream community groups with support from trained group members (mentors). Intervention participants experienced better outcomes than controls in some areas with no difference in other areas. Understanding roles in the community: Findings from the Intellectual Disability Supplement to the Irish Longitudinal Study on Aging M. McCarron (mccarrm@tcd.ie)* & P. McCallion Trinity College Dublin School of Nursing & Midwifery, Dublin, Ireland Aim: To examine the roles people with intellectual disability play within their families and communities. Methods: A representative sample of 753 persons with ID was drawn from Irelands National Intellectual Disability Database. Inclusion criteria: age > 40 and able to provide consent or family/guardian written agreement. In rst wave data collection community engagement questions addressed contact with families, use of social media, social networks, activities outside of living situations, civic activities, access and transportation. Results: Most adults with an ID had a hobby, engaged in daytime activity and leisure pursuits on a regular basis, and had social contacts with others. However, regardless of residential circumstances, adults with an ID seldom engaged in social activities with friends outside their home and were dependent upon staff for transportation, access to community options and activities. The majority of adults had some but limited contact with at least one family member. Older age and more severe levels of ID often meant having fewer members in ones social network. Conclusions: Findings here support research concerns that societies have done a better job of increasing the community presence of people with an ID than facilitating opportunities for meaningful integration. Symposium: Family support
State of the Science Conference
The Arcs Family and Individual Needs for Disability Supports A. Williams-Caldwell (Caldwell@thearc.org)* *The Arc Aim: The aim of the study was to tap into the insights of family caregivers of individuals with intellectual and developmental disabilities in the United States on issues, progress, and concerns across the lifespan. Methods: The study was conducted in 2010 using an on-line survey format, in English. Recruitment was done via dissemination of the study announcement through several national disability organizations. Quantitative analysis was performed. Results: Close to 5,900 respondents provided perspectives. Findings show that despite gains in many lifespan areas, including education, residential, community integration, and employment, individual outcomes are falling short of family hopes and expectations. Families are economically, physically, and emotionally stressed from compensating for the lack of available services and supports, and that cuts to services are negatively impacting families economic stability. Majority of families report that they have no plans for the future when they age out of caregiving capacity. Conclusion: Families are economically, physically, and emotionally stressed from compensating for the lack of available services and supports, and that cuts to services are negatively impacting families economic stability. Few have plans in place for future support once they age out of caregiving capacity. Review of research on adult siblings of individuals with developmental disabilities T. Heller (theller@uic.edu)* *Department of Disability and Human Development, University of Illinois at Chicago Aims: This presentation reviews the literature on siblings of adults with developmental disabilities (DD), focusing on four main questions: (1) What are the psychosocial outcomes of having a sibling with DD on the sibling without a disability? (2) What factors relate to the nature of the sibling relationship? (3) What factors relate to future planning, including expected roles when parents can no longer provide care? (4) What are the support needs of adult siblings of adultss with DD and the policies and practices to address them? Methods: This review looked at research from 1970 to 2011 of adult siblings of individuals with DD over 21 years of age that addressed sibling relationships, psychosocial outcomes, involvement in future planning, support needs, and policy and practice interventions. Results: Overall these studies present a generally positive picture of the outcomes of having a sibling with a disability. They also indicate that siblings tend to have close relationships with their siblings and anticipate taking on greater supportive roles in the future. Conclusion: Siblings play a signicant role in supporting their siblings with DD. They in turn also have needs for support and express desires for training on disability issues, and involvement in sibling networks. The status and future of family support services in the United States J. Agosta (JAgosta@hsri.org)* *Human Services Research Institute, US Aim: In the United States, most people with developmental disabilities live at home with their families. In addition, given scal challenges and other factors, state governments are increasingly relying on families to continue to provide care at home. Presently, it is estimated that about 58% of all those receiving services in the United States live home with a family member. While all states now indicate that they offer supports to these families, there is no consistent denition to describe these family supports. As a result, it is difcult to assess the effort exerted by states to support families. Complicating matters, there are differences in concept and practice pertaining to children and adults living at home with families. Methods: This presentation will draw attention to these circumstances, illustrating what is presently known about family support practices in the United States as well as the primary challenges facing policy makers. Moreover, information will be provided pertaining to emerging practices for supporting individuals and their families. Results: Such practices seek to utilize the supports offered by government programs, but also to promote means for individuals to support one another while also utilizing supports offered by community serving organizations and local businesses. Consistent with this theme, examples of peer support groups and human service cooperatives will be offered. Conclusion: Finally, information will be offered to describe a new research endeavor to arrive at a consensus denition for family support and collect information systematically state by state on family support.

Symposium: Employment/economic self-sufciency Review of the state of the science on employment and economic self-sufciency for people with intellectual and developmental disabilities D. Nord (nord0364@umn.edu)*, W. Kiernan, R. Luecking & D. Mank *Institute on Community Integration, University of Minnesota Aim: To summarize existing researchfrom the United States related to the employment and economic self-sufciency of people with intellectual and developmental disabilities. Methods: Review of existing research from the United States related to system trends and outcomes, interventions and support approaches, innovations, and future directions of research in the area of employment and economic self-sufciency throughout the transition and adult years. Results: People with intellectual and developmental disabilities (IDD) continue to experience high rates of poverty, while the population faces low labor force participation and employment rates. When employed, outcomes for people with IDD, such as wages, hours, and benets are considerably lower than the general population. These outcomes are inuenced by the transition and adult service systems. Additionally, access to quality and skilled support services is associated with improved outcomes, as are individual characteristics and disability. Conclusions: The employment and economic self-sufciency of people with IDD continues to lag. Improvement in outcomes relate to systems, support, and individual level variables.
Symposium: Health and wellness (continued) A review of health and wellness interventions for people with IDD S McDermott*, J. Mann, M. Koger & W. Whitner *Department of Family and Preventive Medicine, University of South Carolina Aim: Although there are evaluation and effectiveness studies of health promotion interventions for adults with intellectual disabilities (ID), randomized efcacy trials of such interventions are lacking. This study was an efcacy trial of a program that had previously been evaluated for effectiveness. Methods: We enrolled 443 individuals and randomly assigned them to one of two eight week participatory classes. The Steps to Your Health (STYH) classes emphasized moderate to vigorous physical activity (MVPA), healthy eating and BMI reduction. The control intervention focused on hygiene and safety. We used accelerometers, body measurement and questionnaires to assess change from baseline to one year following completion of the program. Results: We found that participation in STYH classes was associated with odds of reduction in BMI (OR 2.87, 95% CI 0.919.11) and completers who lived in group homes were more likely to decrease their BMI (OR 4.61; 95% CI 1.1418.64). Conclusions: Although there was a non-signicant association with odds of reduction of BMI (p = 0.07), this trial did not demonstrate a signicant effect of STYH participation on change in mean minutes of MVPA or mean BMI twelve months after classes ended. This study has implications for design of intervention studies in people with ID. Preventing secondary conditions: Results of a systematic literature review
Symposium: Health and wellness A research synthesis on health and wellness outcomes for people with disabilities S. Larson (larso072@umn.edu)* *Institute on Community Integration University of Minnesota Aim: To summarize research on interventions to improve health and wellness outcomes for people with disabilities Methods: Research synthesis on preventing secondary conditions, physical activity and nutrition interventions, and health advocacy. Results: A growing body of research is emerging regarding health and wellness outcomes and interventions for people with intellectual and developmental disabilities. The outcomes of three sustained lines of research efforts will be presented, current debates will be identied, and emerging questions and research needs will be summarized. Conclusions: While research on health and wellness outcomes for people with intellectual disabilities is less advanced than for people with other disabilities, there are now several lines of research in this area. We will summarize this research and develop recommendations for continued efforts in this area. Efcacy of a peer to peer health messages program for people with intellectual disabilities B. Marks (bmarks1@uic.edu)* J. Sisirak & Y-C. Chang *Institute on Disability and Human Development,University of Illinois at Chicago Aim: Little information exists regarding persons with intellectual disabilities (ID) in health promotion and protection research serving as peer health workers. Incorporating peer mentoring literature, health promotion needs of people with ID, and knowledge of community stakeholders, we designed a Peer to Peer HealthMessages Program (PtP-HMP) for people with ID to become Healthy Lifestyle Coaches (HLCs) and teach a 12-week Health Messages Program to their peers in community-based settings. Methods: This presentation will present the development of the PtP-HMP for people with ID which employed mixed methods and the results of the 1 day HealthMessages Train-the-Trainer Workshop that was conducted in two states for Special Olympic athletes with ID and mentors using a pretest/posttest design. Results: Result from the HealthMessages Train-the-Trainer Workshop for Healthy Lifestyle Coaches (HLCs) with ID and mentors demonstrated signicant ndings for HLCs and their mentors across measures of self-efcacy, health advocacy, knowledge, and program satisfaction. Conclusion: Results provide promising support for the role of people with ID as peer health workers. HLCs and their mentors are currently implementing the 12-week PtP-HMP to their peers in their community and program evaluations will be conducted in each state to determine the impact of the PtP-HMP on SO peer athletes.
M.Traci (matraci@ruralinstitute.umt.edu)* K. Humphries & T. Seekins *The Rural Institutes Research &Training Center, University of Montana Aim: We will present results of a systematic literature review to inform the state of the science on evidence-based interventions for preventing secondary conditions among persons with intellectual or developmental disabilities (IDD). Methods: We will review research on interventions targeting public health secondary conditions for people with IDD. We will conduct literature review on the breadth of interventions and to identify controversies and unresolved issues. A panel of national experts will assist us to dene the systematic literature reviews questions and operationalize its inclusion and exclusion criteria. Expert reference librarians will assist in developing search strategies, and acquiring and screening abstracts. We will obtain and evaluate the quality of qualifying full papers, classify the study designs, identify relevant papers, assess the quality of these papers, and construct a body of evidence table. Results: We will present ndings to consumer, service provider, health provider, and policy maker constituencies as we synthesize the reviewed information and summarize the available evidence to guide recommendations for future research priorities. Conclusions: Extensive research efforts have identied the most common secondary conditions for people with IDD. Research is now emerging on interventions to prevent or reduce secondary conditions.

Symposium: Choice, self-control and self-determination Promoting the self-determination of adults with intellectual and developmental disabilities:The critical role of direct support professionals (DSPs) B. Abery (abery001@umn.edu)* *University of Minnesota, RTC on Community Living & Employment Aim: Efforts to promote self-determination (SD) among adults with intellectual disability (ID) have focused on providing opportunities designed to enhance the personal capacities of members of this group. This research has been primarily based on interviews with people with ID themselves. Such an approach is fraught with difculties, among them the fact that persons with the lowest levels of SD are often unable to directly participate. An alternative approach is to focus on facilitating changes in the environments in which individuals with ID live and determine which classes of behaviors on the part of Direst Support Professionals (DSPs) increase the probability of SD responses among the individuals they serve. Methods: This session will provide an overview of the tripartite, ecobehavioral model of SD developed by the Minnesota RRTC and an approach that measures moment-to-moment interactions between DSPs and persons with ID. Results: Discussion will then focus on evidence that examines the extent to which discrete behaviors on the part of DSPs increase, decrease, or have no impact on the probability of SD responses on the part of consumers. Conclusion: Approaches will then be discussed through which these ongoing interactions can be used to effectively support the development of higher levels of SD. Promoting the self-determination and community inclusion of youth with intellectual and developmental disabilities M. Wehmeyer (wehmeyer@ku.edu)* *University of Kansas Aim: Promoting self-determination is considered best practice in special education and there is growing attention towards its importance in the literature. This session will provide an overview of a series of research studies providing an evidence-base for efforts to promote self-determination. Specic interventions designed to promote student involvement in educational planning and decision-making will be explored. Additionally attention to the efcacy of interventions that promote self-regulated problem solving and goal setting and attainment, and an examination of the impact of self-determination on adult outcomes such as community living, employment and community inclusion will be reviewed. Methods: Asynthesis of the existing literature and research outcomes that focus on self-determination and measurement of various outcomes (e.g. problem-solving, transition, goal setting/attainment, community living, employment, inclusion) will be presented. Results: There are effective interventions and practices to promote self-determination of children and youth with IDD in schools and these yield important positive outcomes related to community and inclusion. Conclusions: A maturing evidencebase for the efcacy of interventions to promote self-determination and the effect of such interventions on transition, academic and adult outcomes exists. Priorities for further research in the area of self-determination are identied. Symposium: Predictors of outcomes Review of covariates and systemic inuences on outcomes for people with disabilities S. Larson (larso072@umn.edu)*, A. Hewitt & D. Nord *Institute on Community Integration Aim: To summarize research that identies factors associated with outcomes including type of residence, stafng, and individual characteristics. Methods: Review of research including but not limited to ndings of the Residential Information Systems Project, the Research and Training Center on Community Living and Employment staff intervention work, and National Core Indicators research that identies covariates and systemic inuences on outcomes. Results: Outcomes for people with disabilities include both living in and being a full participant in ones home, family and community. Deinstitutionalization efforts have increased support for community living but the type of community setting one lives in and the nature of employment or other day supports continue to be associated with differences in participation and other outcomes. The degree of access to highly qualied and appropriately trained direct support staff members can inuence outcomes and the lack of such individuals can negatively impact those outcomes. Outcomes also vary depending on ones personal characteristics and disabilities. Conclusions: The study of outcomes for people with disabilities must include attention to systemic and individual characteristics that co-vary with outcomes.
Symposium: Methodological issues in measurement, operationalization and instrumentation Overview of methodological issues in research on outcomes experienced by people with intellectual disability R. Stancliffe (roger.stancliffe@sydney.edu.au)* *Faculty of Health Sciences, The University of Sydney, Australia Aim: To examine of selected methodological issues concerning obtaining, analyzing and interpreting outcome data related to people with intellectual disability. Methods: This paper examines how these methodological issues are dealt with in selected examples of contemporary research with key studies drawn from several different strands of inquiry. Results: Evidence will be presented on (a) the importance of using a range of outcome indicators, (b) difculties of assembling large, representative samples (especially of low-incidence sub groups), (c) challenges of obtaining selfreport data, (d) the trade-off between use of mainstream assessments and intellectual disability-specic assessments, (e) ethical and practical constraints on randomization, (f) limited availability of longitudinal data, (g) the frequent absence of comparisons with outcomes experience by the general community to enable the evaluation of relative disadvantage, and (h) limited attention to the interaction between personal characteristics, service models and individual outcomes. Conclusions: Intellectual disability research on outcomes and its application to guide policy is characterized by a number of methodological compromises driven, in part, by factors examined in this paper. Methodological issues arising from research using population-based data sets E. Emerson (eric.emerson@lancaster.ac.uk)* *Lancaster University, UK and University of Sydney, Australia Aim: To review key methodological issues involved in identifying people with intellectual disabilities in population-based administrative data sets and surveys. Methods: Narrative (non-systematic) review with key points illustrated by new analyses of data from two UK surveys; the Millennium Cohort Study (children) and the Life Opportunities Survey (adults). Results: Key issues to be discussed will include: (1) the under identication of adults with less severe intellectual disabilities in administrative data sets; (2) the nature of self-reported intellectual impairments by adults in population surveys; (3) the validity of parental reports of child developmental delay in population surveys. Conclusions: Administrative data sets and population-based surveys can provide important sources of information on the health and well-being of people with intellectual disabilities. However, the value and uses of such data need to be considered in the context of a number of key methodological challenges. Obtaining and interpreting data on outcomes from informants D. Felce (felce@cf.ac.uk)* *Welsh Centre for Learning Disabilities, School of Medicine, Cardiff University, UK Aim: Outcomes relevant to quality of life or the rights of persons with disabilities span a variety of domains. The aim is to review ways of obtaining and interpreting subjective or objective data that are scientically valid. Methods: Issues covered include: the primacy of self-report for subjective data, the limits of obtaining self-report data, agreement between proxy and self-report, and the interpretation of objective data in the absence of self-reported lifestyle goals. Results: Evidence will be presented on: (a) the distinctive status of subjective and objective measurement, (b) the extent to which proxy and self-reports agree, (c) the extent to which obtaining self reports free of response bias may be limited among people with intellectual disabilities, (d) the factors that might inuence the validity of objective data, (e) the limitations of proxy-reported objective data, and (e) the strength of group objective data to reveal inequality. Conclusions: Self-report is the only valid way to obtain subjective data. Objective information can be obtained from proxy informants but cannot be interpreted at the individual level because people differ in what they want from life. However, variation within group distributions allows for individual difference and comparison to normative data can be meaningful.

Symposium: Quality of life indicators Quality of life indicators for individuals with intellectual disabilities An overview of current practice I. Brown (ivan.brown@utoronto.ca)* *Faculty of Social Work, University of Toronto Aim: This presentation will provide an overview of quality of life indicators that have been developed to date for individuals with intellectual disabilities. It will also point to areas of future research and development. Method: An analysis of existing literature that pertains to the quality of life of individuals with intellectual disabilities was carried out with a view to identifying the indicators of quality of life that have been reported in conceptual models and research reports. These were categorized according to the major domains of individuals life studies. Results: Numerous quality of life indicators have been developed for individuals with intellectual disabilities over the past 20 years, and are associated with clear domains of life that have been validated in a considerable amount of research. Conclusions: The indicators that have been developed to date provide one good way of measuring quality of life of individuals, although there are gaps that need to be lled by further research and development. Whose outcomes? Choice of frameworks can enhance or impede policy impact E. Emerson (eric.emerson@lancaster.ac.uk)* *Lancaster University, UK and University of Sydney, Australia Aim: To discuss relevance of choice of organising framework for enhancing the policy impact of monitoring outcomes of social policies related to intellectual disability. Methods: Narrative (non-systematic) review with key points illustrated by two case studies: (1) the selection and framing of indicators to monitor longitudinal trends in the social inclusion of adolescents and young adults with disabilities in Australia; (2) the selection and framing of indicators to monitor the well-being of young children with developmental delay in low/middle income countries in the Asia Pacic region. Results: Key national policy frameworks and international human rights instruments (e.g., UN Convention on the Rights of the Child, UN Convention on the Rights of Person with Disabilities) provide viable frameworks for selecting and reporting indicators of quality of life outcomes that avoid some of the methodological difculties associated with the use of subjective well-being as the key indicator. Conclusions: Aligning the selection and reporting of indicators of quality of life outcomes to key national policy frameworks and international human rights instruments may signicantly enhance the policy relevance and traction. The capabilities approach as a framework for understanding the lives of people with intellectual disabilities C. Hatton (chris.hatton@lancaster.ac.uk)* *Centre for Disability Research, Lancaster University, UK Aim: The capabilities approach developed by Sen and Nussbaum offers a potential framework for understanding the lives of people with intellectual disabilities, whilefocusing on social justice. Method: The capabilities approach was reviewed for its applicability to people with intellectual disabilities, and compared to other frameworks (including medical and social models of disability, quality of life frameworks and human rights approaches). Results: The central focus of a capabilities approach is What is each person able to do and to be? . . . the approach takes each person as an end, asking not just about the total or average well-being but about the opportunities available to each person. It is focused on choice or freedom, holding that the crucial good societies should be promoting for their people is a set of opportunities, or substantial freedoms, which people then may or may not exercise in action: the choice is theirs (Nussbaum, 2011). This focus has the potential to synthesise and strengthen existing quality of life and human rights based approaches. Conclusions: The capabilities approach offers a promising framework for understanding the lives of people with intellectual disabilities, with quality of life and human rights approaches offering valuable methods for operationalising this framework into research, policy and practice.
Symposium: Using outcome data to make public policy and practice decisions Using outcome data to make public policy and program decisions C. Moseley (cmoseley@nasddds.org)* *NASDDDS Aim: The aim is threefold. First, discuss the concept of Evidence Based Policy and the responsible application of the best available research evidence in the design, administration and reform of programs, services and supports for individuals with ID/DD. Second, to present examples of a states use of National Core Indicators performance data to measure, track and benchmark individual and service outcomes. And third, provide examples of a states use of research data for policy and program development, strategic planning, and regulatory compliance. Multistate NCI data will be presented to identify and describe national trends and areas of policy focus. Methods: The presentation will review and discuss the use of the National Core Indicator data in one state to gather information and report system performance on choice, access to services, respect and rights, community participation, relationships, health and wellness, employment, and satisfaction. Results: The results of the use of NCI data to improve state policy and service outcomes will be discussed in terms of the research conducted and data sources used, policy and program areas targeted for improvement, and recommendations made for future action. Conclusions: The presentation will end with a discussion of the outcomes achieved by the application of sound research evidence to policy and strategic planning, and will include recommendations for policymakers and researchers on evidence based approaches to systems change. Symposium: State of the Science nal session IASSID State of the Science nal session A. Amado (amado003@umn.edu)* & L. Sedlezky *Institute on Community Integratio, University of Minnesota Aim: This is a working session bringing together the invited professionals/ experts from the State of the Science Conference to identify key future research directions related to outcomes for people with IDD. Methods: Based on conference proceedings, participants will identify: (1) the principal future research needs within each of the SOSC focus areas (e.g., health, quality of life, family, employment, choice/self-determination,) and (2) research needs identied across all SOSC focus areas. Individual and group processes will be used to: (1) dene the knowledge gaps identied in outcome research, (2) identify important future research directions, and (3) determine which research needs are the most important for the future of quality supports for individuals with IDD. Results: Themes related to best directions for future IDD research and IDD research that will most inuence outcomes in the quality of life and quality of services of individuals with IDD will be prioritized. Conclusion: There is an emerging body of research related to important quality of life outcome for people with IDD based on the services and supports they receive. There are signicant policy and practice implications from this body of knowledge and important next steps in this research focus need to be explored.

Journal of Disability

Diunggah oleh

Informasi Dokumen

Hak Cipta

Format Tersedia

Bagikan dokumen Ini

Bagikan atau Tanam Dokumen

Opsi Berbagi

Apakah menurut Anda dokumen ini bermanfaat?

Apakah konten ini tidak pantas?

Hak Cipta:

Format Tersedia

Journal of Disability

Diunggah oleh

Hak Cipta:

Format Tersedia

2012 IASSID World Congress 655

Journal of Intellectual Disability Research 656

2012 IASSID World Congress 657

Journal of Intellectual Disability Research 658

Aging and Lifespan

2012 IASSID World Congress 659

Aging and Lifespan

Journal of Intellectual Disability Research 660

Aging and Lifespan

2012 IASSID World Congress 661

Aging and Lifespan

Journal of Intellectual Disability Research 662

Aging and Lifespan

2012 IASSID World Congress 663

Aging and Lifespan

Journal of Intellectual Disability Research 664

Aging and Lifespan

2012 IASSID World Congress 665

Aging and Lifespan

Journal of Intellectual Disability Research 666

Aging and Lifespan

2012 IASSID World Congress 667

Aging and Lifespan

Journal of Intellectual Disability Research 668

Aging and Lifespan

2012 IASSID World Congress 669

Aging and Lifespan

Journal of Intellectual Disability Research 670

Aging and Lifespan

2012 IASSID World Congress 671

Biological and Biobehavioural

Journal of Intellectual Disability Research 672

Biological and Biobehavioural

2012 IASSID World Congress 673

Challenging Behaviour, Mental Health, and Offending

Journal of Intellectual Disability Research 674

Challenging Behaviour, Mental Health, and Offending

2012 IASSID World Congress 675

Challenging Behaviour, Mental Health, and Offending

Journal of Intellectual Disability Research 676

Challenging Behaviour, Mental Health, and Offending

2012 IASSID World Congress 677

Challenging Behaviour, Mental Health, and Offending

Journal of Intellectual Disability Research 678

Challenging Behaviour, Mental Health, and Offending

2012 IASSID World Congress 679

Challenging Behaviour, Mental Health, and Offending

Journal of Intellectual Disability Research 680

Challenging Behaviour, Mental Health, and Offending

2012 IASSID World Congress 681

Challenging Behaviour, Mental Health, and Offending

Journal of Intellectual Disability Research 682

Challenging Behaviour, Mental Health, and Offending

2012 IASSID World Congress 683

Challenging Behaviour, Mental Health, and Offending

Journal of Intellectual Disability Research 684

Challenging Behaviour, Mental Health, and Offending

2012 IASSID World Congress 685

Challenging Behaviour, Mental Health, and Offending

Journal of Intellectual Disability Research 686

Challenging Behaviour, Mental Health, and Offending

2012 IASSID World Congress 687

Challenging Behaviour, Mental Health, and Offending

Journal of Intellectual Disability Research 688