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Journal of Intellectual Disability Research doi: 10.1111/jir.12423

VOLUME 61 PART 11 pp 10551068 NOVEMBER 2017

The determinants of service complexity in children with

intellectual disabilities
S. L. Stewart,1 K. Falah Hassani,1 J. Poss,2 & J. Hirdes2
1 Faculty of Education, Western University, London, Ontario, Canada
2 School of Public Health and Health Systems, University of Waterloo, Waterloo, Ontario, Canada

Abstract aged 1114 years and children with autism spectrum

disorder used over twofold higher levels of service
Background To date, little is known about the
complexity than children aged equal to or less than
predictors of healthcare service utilisation in children
10 years or children with other causes of ID. More-
with intellectual disability (ID). The aim of this study
over, victims of bullying, high scores on the family
was to identify the factors associated with service
functioning scale or learning or communication dis-
complexity in children with ID in Ontario, Canada.
order were associated with greater service complexity.
Methods The population of this cross-sectional study
Conclusions The ndings of this study indicate that a
consisted of 330 children with ID ages 4 to 18 years
variety of factors are related to service complexity
who accessed mental health services from November
ranged from childrens nonclinical (age and
of 2012 to June of 2016 in four agencies. All partici-
experiences of bullying) to clinical (e.g. aggression,
pants completed the interRAI Child and Youth
learning/communication problems and autism spec-
Mental Health and Developmental Disability Assess-
trum disorder) characteristics.
ment Instrument, which is a semi-structured
clinician-rated assessment that covers a range of Keywords autism spectrum disorder, bullying,
common issues in children with ID. The outcome of intellectual disability, interRAI, learning disorder,
this study was a service complexity variable based on mental health services
(1) mental health service utilisation including any
services provided to the child and (2) the manage-
ment involved in providing that care. Eight individual
items were summed, resulting in a scale that ranged Introduction
from 0 to 8. Scores were then dichotomised into two
groups: a score of 02 identied children with a low Intellectual disability (ID) is dened as a disability
service complexity and a score of 3 or higher identi- characterised by signicant limitations in intellectual
ed children with a high service complexity. functioning and adaptive behaviour (Schalock et al.,
Results After adjustment for other covariates, gender 2010). ID affects about 1.8% of children and youth
was not associated with service complexity. Children (hereafter children refer to both children and youth)
and is more prevalent in men than in women (Maulik
Correspondence: Kobra Falah-Hassani, PhD, Faculty of Education,
et al., 2011). Moreover, it is more common in low-
Western University, 1137 Western Road, London, Ontario, Canada, income and middle-income countries than in high-
N6G 1G7 (e-mail: income countries (Maulik et al., 2011).

2017 MENCAP and International Association of the Scientic Study of Intellectual and Developmental Disabilities and
John Wiley & Sons Ltd
Journal of Intellectual Disability Research VOLUME 61 PART 11 NOVEMBER 2017
S. L. Stewart et al. Determinants of service complexity

Intellectual disability is a health condition that their homes (Hurlburt et al., 2004). Higher mental
often requires special healthcare needs (McPherson health service use by children in foster or group care
et al., 1998). For example, children with ID are may be due to the fact that these children engage in
threefold to fourfold more likely to have problem more aggressive, self-injurious behaviour or deliberate
behaviours than children from the general population self-harm; have a history of physical abuse or
(Dekker et al., 2002). They are more likely to witnessed domestic violence in the household and are
experience somatic complaints, social problems, consequently more likely to be placed out-of-home
attention problems, thought problems, delinquent (den Dunnen et al., 2013; Stewart et al., 2014;
behaviour, aggressive behaviours or internalising or Armiento et al., 2016; Baiden et al., 2017a; Baiden
externalising problem (Dekker et al., 2002) and are et al., 2017b).
also more likely to be at higher risk of a mental health While there is a paucity of research in the area of
disorder than children without ID; 30 to 50% of service utilisation for children with disabilities,
children with ID have a mental health disorder parental perception of signicant problems in the
compared with 8 to 18% of those without (Einfeld child is associated with increased use of mental health
et al., 2011). Approximately, 17% of children with ID services (Verhulst & van der Ende, 1997). Caregivers
exhibit self-injury (Oliver & Richards, 2015) and are of children with developmental disabilities experience
at increased risk for suicidal thoughts, suicidal higher levels of distress (Herring et al., 2006) than
behaviours and death by suicide (Ludi et al., 2012), caregivers of children without disabilities.
compared with individuals without ID. Furthermore, Furthermore, emotional and behaviour problems of
the prevalence rate for sexual and physical violence children with ID, as well as caregiving demands, are
toward children with disabilities is 14% and 20% associated with poorer perceived family functioning
respectively which is 3.7 times more common than (Raina et al., 2005; Herring et al., 2006). However,
violence against children without disabilities (Jones the role of caregiver distress in mental health service
et al., 2012). These vulnerable children are also 2 to 3 utilisation in children with ID is not known. For
times more likely to be bullied than children without example, there is a paucity of research examining
disabilities (Banks et al., 2009; Twyman et al., 2010). whether caregiver distress and poorly perceived family
Recently, research has indicated that children with functioning are independent predictors of mental
ID use more healthcare services than the general health service use. To date, little is known about
population, particularly rehabilitative and psychiatric independent causes of increased healthcare service
services (Schieve et al., 2012; Chiang et al., 2013). For utilisation in children with ID. Such knowledge is
example, children with ID have 1.5 times more doctor needed to target modiable risk factors related to
visits and 3.5 times more hospital days than children healthcare utilisation and service complexity. We
without ID (Boyle et al., 1994). According to previous therefore aimed to identify the determinants of service
research, the use of mental health services does not complexity in a group of children with ID receiving
differ between boys and girls (Verhulst & van der services in the province of Ontario, Canada.
Ende, 1997); however, younger children with ID are
less likely to receive mental health services (Witt et al.,
2003) than older children.
Children with ID who experienced a negative life This cross-sectional study used items from the
event utilise mental health services more frequently or existing dataset of the interRAI Child and Youth
seek other professional help than children with ID Mental Health and Developmental Disability
who have not experienced negative life events (ChYMH-DD; Stewart et al., 2015a) and aimed to
(Douma et al., 2006). Research has indicated that investigate correlations between mental health service
children in out-of-home placements experience complexity in a convenience sample of clinically
physical and sexual abuse and are at higher risk for referred children with ID. Children with ID were
suicide than children living in their home (Harpin assessed in mental health settings by clinicians to
et al., 2013). Children placed in foster care or group support comprehensive care planning, outcome
care have a threefold to vefold increase in the use of measurement, and to estimate relative resource
mental health services than children remaining in intensity.

2017 MENCAP and International Association of the Scientic Study of Intellectual and Developmental Disabilities and
John Wiley & Sons Ltd
Journal of Intellectual Disability Research VOLUME 61 PART 11 NOVEMBER 2017
S. L. Stewart et al. Determinants of service complexity

Participants mental health service utilisation, treatments,

nutritional status, education, environmental
The study sample consisted of 330 English-speaking
assessment and diagnostic and other health-related
children between the ages of 418 years old who
information. Numerous studies have found items and
accessed mental health services from November of
scales embedded in the interRAI Child and Youth
2012 to June of 2016. The children were referred to
instruments to have strong psychometric properties
mental healthcare agencies by family doctors,
(Lau et al., 2017; Stewart, Currie et al. 2015, Phillips
paediatricians, parents or other allied healthcare
& Hawes, 2015, Stewart & Hamza, 2017).
professionals. Assessors at these agencies completed
the interRAI ChYMH-DD as part of normal clinical
practice across four sites providing mental health
services to children and youth with ID in the province To develop the service complexity scale, the literature
of Ontario, Canada. The assessment took approxi- was reviewed to identify a list of candidate items.
mately 6090 minutes to complete. Children without Second, an expert panel was conducted with the
a diagnosis of ID (IQ above 70) were excluded from original research team to identify key factors
this study. The study was approved by the University associated with service utilisation and complexity in
of Western Ontario ethics board (REB #106415), and the interRAI ChYMH-DD (Appendix A). The
written informed consent was given by guardians of service complexity scale was constructed by using
children in the present study as part of consent to three different types of services: (1) formal care
treatment at the service agencies. provided to the patient: psychiatrist, social worker,
psychologist, psychometrist, child protection and case
Measures management; (2) the number of lifetime admissions
to mental health facilities and (3) the interventions
A detailed description of the interRAI Child and
provided to the child in the last 30 days: life skills
Youth instruments has been provided in previous
training, social skills, family functioning, anger
publications (Armiento et al., 2016; Stewart, Currie
management, behaviour management, crisis
et al., 2015; Stewart et al., 2015a, 2015b; Stewart &
intervention, family preservation, family support and
Hirdes, 2015; Stewart et al., 2016; Stewart et al., in
medication management. Eight individual items were
press) and is also available from interRAIs website at
scored from 0 to 1 based on the responses described
above. The items were summed, with a resulting
health.html In brief, the interRAI ChYMH-DD
service complexity scale that ranged from 0 to 8.
(Stewart et al., 2015a) is based on a semi-structured
Scores were then dichotomised into two groups
clinician-rated interview that covers a range of
whereby a score of 02 identied children with a
common issues in children with global developmental
low service complexity score and those with a score
delays or ID (children 418 years). It includes over
of 3 or higher were identied with high service
400 items and builds a comprehensive picture of the
complexity score.
childs strengths, needs, functioning and areas of risk
to inform care planning for clients with mental health
Data collection
needs. The clinician creates a clinical prole of
children based on a collection of reports, observations Information was collected on marital status of parents
and judgments made from interactions with the and classied into four groups: (1) married; (2)
family, the children themselves and service providers partner; (3) widowed, separated or divorced and (4)
with appropriate consent (Stewart et al., 2015a; unknown. Severity of ID was grouped into four levels
Stewart et al., 2015b). borderline or mild, moderate, severe or profound
The ChYMH-DD assesses a variety of domains and a level that indicated there was an existing ID but
including mental state indicators, substance use or the severity of the ID could not be obtained (e.g.
excessive behaviour, strengths and resilience, untestable).
cognition and executive functioning, independence of Data on provisional or actual clinical diagnoses
daily living, health conditions, family and social including autism spectrum disorder, learning or
relations, stress and trauma, medication, prevention, communication disorder, attention decit

2017 MENCAP and International Association of the Scientic Study of Intellectual and Developmental Disabilities and
John Wiley & Sons Ltd
Journal of Intellectual Disability Research VOLUME 61 PART 11 NOVEMBER 2017
S. L. Stewart et al. Determinants of service complexity

hyperactivity disorder (ADHD), reactive attachment into two groups: absent (score 0) and present
disorder, eating disorder, substance-related disorders, (score 15) (Stewart & Hamza, 2017).
schizophrenia and other psychotic disorders and sleep The Family Functioning Scale (Sun, 2016) measures
disorders were collected. Data regarding recent life the level of functioning in the family and include
events included victim of bullying, witness of items such as family is persistently hostile or critical
domestic violence and victim of sexual or physical of child, family members report feeling
assault or abuse. Children who witnessed domestic overwhelmed by childs condition or parent/primary
violence was dened as being aware of, had caregiver has current developmental, mental health
knowledge of or had witnessed physical or verbal or substance use issues. Responses were summed,
actions or threats between family members. Victim of resulting in a scale ranging from 0 to 6. The scores
sexual or physical assault or abuse was dened as any for this scale were then classied into three groups:
form of sexual or physical abuse/assault experienced none (score 0), low (score 13) and high (score
by the child, regardless of his or her age when the 46). High scores indicate weaker family
incident(s) occurred. Lastly, information regarding functioning.
concern that child/youth is at risk for self-injury (non-
suicidal harm to self) was gathered from family, Statistical analysis
caregiver, friend or staff.
Data were collected by using several additional A logistic regression model was conducted to identify
scales. The Risk of Harm to Others Scale uses a the factors associated with service complexity. A
decision tree algorithm that depicts risk based on logistic regression model allows studying the
responses to items such as violent ideation, relationship of a dichotomised outcome with a group
intimidation of others or threatened violence, of characteristics. For each characteristic, a logistic
violence to others and preoccupation with violence. regression model gives a regression coefcient and an
This scale has six scores which were classied into odds ratio (OR). In this study, we reported ORs. For
four groups: none (score 0), low (score 12), example, the OR for gender dipicts the odds of service
moderate (score 34) and high (score 56). Higher complexity for women to the odds of service
scores indicate increased risk of harm to others complexity for men. First, an age-adjusted and
(Neufeld et al., 2012). gender-adjusted logistic regression model was
The Severity of Self Harm Scale provides a risk conducted for each characteristic. Second, all
algorithm that includes items such as performing a characteristics that were signicantly (P 0.05)
self-injurious act, intent of self-injurious attempt was associated with service complexity in the age-adjusted
to kill self, expressed concern that the child was at risk and sex-adjusted models were placed in the full
for self-injury and depressive symptoms. The Severity model. Lastly, a nal multivariable model was
of Self Harm Scale ranged from 0 to 6 and grouped completed keeping age, gender and other
into none (score 0), low (score 12) or moderate characteristics that were associated with service
or high (score 36). Higher scores indicate increased complexity with P 0.20 in the full model. The
risk of harm to self (Hirdes et al., 2010). overall goodness of t of the multivariable model was
The Caregiver Distress Scale was used to monitor assessed by using the HosmerLemeshow test. The
change in a family caregivers stress level. The scale area under the receiver operating characteristic curve
determines major life stressors for the parent in last following the nal multivariable model was then
90 days and includes items such as parent is unable or estimated.
unwilling to continue in caring activities; parent
expresses feelings of distress, anger or depression and Results
parent/primary caregiver has current developmental,
Sample characteristics
mental health or substance use issues. Standard use of
the scale classies scores into three groups: none The mean age of the study population was 11.6 years,
(score 0), low (score 13) and high (score 45). and 76% were men. Thirty-two per cent of the sample
For the nal multivariable analysis in the current lived in a family with three or more children in the
study, the Caregiver Distress Scale was dichotomised household and 25% of the parents were widowed,

2017 MENCAP and International Association of the Scientic Study of Intellectual and Developmental Disabilities and
John Wiley & Sons Ltd
Journal of Intellectual Disability Research VOLUME 61 PART 11 NOVEMBER 2017
S. L. Stewart et al. Determinants of service complexity

separated or divorced. For the sample, 36.7% of disorder, eating disorder, substance-related disorders,
children had autism spectrum disorder, and 12.3% schizophrenia and other psychotic disorders and sleep
were raised with frequent disruptions in care. For a disorders were not signicantly associated with
large portion of the sample (45%), the level of ID was complex mental health service utilisation.
Full multivariable model
Service complexity score
After including all signicant variables in the full
Age-adjusted and gender-adjusted models
model, six variables were signicantly associated with
Table 1 provides information on the age-adjusted and service complexity (Table 2). Children aged
gender-adjusted OR of healthcare utilisation by 1114 years utilised twofold (OR = 2.30, 95% CI
background characteristics. A number of 1.124.74) the level of service complexity than
characteristics examined at the age-adjusted and younger children aged 10 years. Children who had
gender-adjusted models were found to be signicantly autism spectrum disorder used threefold
associated with service complexity. Mental health (OR = 2.79, 95% CI 1.495.20) higher levels of
service complexity was 2.90 times higher in children service complexity than children with other causes of
aged 1114 years and 2.18 times in those aged ID. Moreover, victim of bullying (OR = 2.66, 95%
15 years compared with children 10 years or younger CI 1.335.32) was associated with increased service
after adjustment for gender. Gender was not complexity. Service complexity increased with higher
associated with mental health service complexity after scores on the Family Functioning Scale. The adjusted
adjusting for age. Service complexity was higher in OR was 3.33 (95% CI 1.159.60) for moderate and
children with widowed, separated or divorced parents 8.33 (95% CI 2.0933.23) for high levels of family
(OR = 2.19, CI 1.213.95) and common law partners dysfunction. Gender and marital status were not
(OR = 1.99, CI 1.023.88) compared with married associated with service complexity while caregiver
parents. There was also a signicant positive distress was approaching signicance (OR = 2.03, CI
relationship between childrens legal guardianship 0,974.25).
and service complexity; specically, children who The HosmerLemeshow goodness-of-t test
were involved with Child Protective Services had a indicated that the model ts the data (P = 0.37).
higher level of service complexity compared with Together, all the characteristics in the nal model
children without such involvement. explained 23.4% of the variance in mental health
Service complexity was higher in children with service utilisation. The area under the receiver
autism spectrum disorder and those who were raised operating characteristic curve was 0.815, indicating
with frequent disruptions in care (OR = 3.78, CI that 81.5% of the children were correctly classied as
1.887.60); however, service complexity was not having service complexity based on the eight
related to the number of children in household, characteristics.
history of foster family placement and severity of ID
(Table 1). The use of mental health services increased
positively with increasing scores on the Caregiver
Distress Scale and Family Functioning Scale. This study showed that mental health service
Moreover, risk of harm to others, concerns about utilisation was higher in children age 1114 years,
child self-injury, aggressive/disruptive behaviour, children with autism spectrum disorder, children
victimisation due to bullying and domestic violence with learning or communication disorder, children
were signicantly associated with service complexity living in families with high levels of family
score (Table 1). With respect to diagnoses, ADHD, dysfunction, and children who were victims of
learning or communication disorder and autism bullying. Our ndings are in line with the previous
spectrum disorder were all associated with service studies that indicated a variety of family factors,
complexity. Financial difculties, victim of sexual including family structure, inuence service
assault or abuse, victim of physical assault or abuse, utilisation (Brannan et al., 2003; Zimmerman, 2005;
self-injurious behaviour, reactive attachment Gaskin et al., 2008). Specically, compared with

2017 MENCAP and International Association of the Scientic Study of Intellectual and Developmental Disabilities and
John Wiley & Sons Ltd
Journal of Intellectual Disability Research VOLUME 61 PART 11 NOVEMBER 2017
S. L. Stewart et al. Determinants of service complexity

Table 1 Age-adjusted and gender-adjusted odds ratio (OR) of service complexity by background characteristics. Service complexity is dened
as having a score of 3 or higher on the service complexity measure

Number of % of service
Characteristic Sample service complexity complexity OR 95% CI

Socio-demographic factors
10 124 21 16.9 1
1114 118 44 37.3 2.90 1.595.29
15 84 26 31.0 2.18 1.134.23
Age as a continuous variable 326 91 1.11 1.031.19
(1-year increase in age)
Male 247 67 27.1 1
Female 79 24 30.4 1.10 0.621.94
Marital status
Married 168 33 19.6 1
Partner 58 20 34.5 1.99 1.023.88
Widowed, separated or divorced 85 31 36.5 2.19 1.213.95
Unknown 15 7 46.7 3.33 1.1010.09
Legal guardianship
Both parents 204 42 20.6 1
Mother only 71 27 38.0 2.24 1.234.05
Father only 11 4 36.4 1.96 0.547.10
Relative (s) or non-relative (s) 14 3 21.4 0.97 0.263.68
Child protection agency 26 15 57.7 4.43 1.8610.56
History of foster family placement
None 265 66 24.9 1
One foster family 36 14 38.9 1.76 0.843.67
Multiple foster families 25 11 44.0 1.87 0.784.43
Child raised with frequent disruptions in care
No 286 68 23.8 1
Yes 40 23 57.5 3.78 1.887.60
Current number of children in household
1 95 29 30.5 1
2 118 27 22.9 0.74 0.401.37
3 100 26 26.0 0.90 0.481.71
Financial difculties
No 309 87 28.2 1
Yes 17 4 23.5 0.79 0.252.54
Severity of intellectual disability
Borderline or mild 80 26 32.5 1

Moderate 67 19 28.4 0.77 0.371.58

Severe or profound 62 16 25.8 0.72 0.341.54
Not documented 117 30 25.6 0.90 0.471.73
Violence factors
Severity of self-harm scale
0 (None) 169 41 24.3
12 (Low) 13 4 30.8 1.21 0.354.21
36 (Moderate or High) 32 15 46.9 2.46 1.125.41
Not documented 112 31 27.7 1.19 0.692.07
Self-injurious behaviour
No 143 34 23.8 1
Present but not exhibited in last 3 days 53 15 28.3 1.31 0.642.70

2017 MENCAP and International Association of the Scientic Study of Intellectual and Developmental Disabilities and
John Wiley & Sons Ltd
Journal of Intellectual Disability Research VOLUME 61 PART 11 NOVEMBER 2017
S. L. Stewart et al. Determinants of service complexity

Table 1. (Continued)

Number of % of service
Characteristic Sample service complexity complexity OR 95% CI

Exhibited on 12 of last 3 days 27 7 25.9 1.22 0.473.19

Exhibited daily in last 3 days, 12 episodes 25 9 36.0 1.78 0.714.44
Exhibited daily in last 3 days, 3 or more 78 26 33.3 1.67 0.903.11
episodes or continuously
Caregiver Distress Scale
0 (None) 127 17 13.4 1
12 (Low) 153 56 36.6 3.35 1.806.21
35 (High) 45 18 40.0 4.06 1.838.97
Family, caregiver, friend or staff expressed
concern that child/youth was at risk for self-injury
No 252 60 23.8 1
Yes 74 31 41.9 2.19 1.253.82
Victim of bullying
No 254 58 22.8 1
Yes 72 33 45.8 2.55 1.464.46
Witness of domestic violence
No 275 66 24.0 1
Yes 51 25 49.0 2.79 1.495.20
Victim of sexual assault or abuse
No 311 83 26.7 1
Yes 15 8 53.3 2.78 0.968.04
Victim of physical assault or abuse
No 276 71 25.7
Yes 50 20 40.0 1.66 0.873.16
Risk of harm to others scale
0 (None) 110 21 19.1 1
12 (Low) 28 4 14.3 0.65 0.202.11
34 (Moderate) 20 9 45.0 3.14 1.148.66
56 (High) 56 26 46.4 3.39 1.666.94
Not documented 112 31 27.7 1.60 0.843.03
Family Functioning Scale
0 (None) 84 5 6.0 1
13 (Low) 211 69 32.7 7.14 2.7518.53
46 (High) 30 17 56.7 17.34 5.3656.13
Aggressive/disruptive behaviour
No or mild (score 03) 50 8 16.0 1
Moderate (score 47) 78 22 28.2 2.26 0.905.67
High (score 810) 58 18 31.0 2.36 0.916.11
Very High (score 1120) 140 43 30.7 2.63 1.126.18
Provisional (or actual) diagnoses
Attention decit hyperactivity disorder
No 162 33 20.4 1
Yes 111 39 35.1 1.86 1.063.26
Learning or communication disorder
No 152 24 15.8 1
Yes 126 53 42.1 3.80 2.146.73
Not documented 48 14 29.2 2.48 1.145.40
Autism spectrum disorder
No 188 40 21.3 1
Yes 109 44 40.4 2.39 1.414.03

*Age included in the models as a continuous variable.

2017 MENCAP and International Association of the Scientic Study of Intellectual and Developmental Disabilities and
John Wiley & Sons Ltd
Journal of Intellectual Disability Research VOLUME 61 PART 11 NOVEMBER 2017
S. L. Stewart et al. Determinants of service complexity

Table 2 Mutually adjusted odds ratio (OR) of healthcare utilisation in care in early childhood were more prevalent in the
by background characteristics in 296 subjects
high (25.3%) compared with low service complexity
group (7.2%). These children have also experience
Characteristic OR 95% CI forms of abuse or have witnessed domestic violence,
factors known to lead to placements within foster
Age homes, inpatient services and residential treatment as
1114 vs. 10 2.30 1.124.74 well as other outpatient services (Barber et al., 2001;
15 vs. 10 1.02 0.462.28
Courtney et al., 2001; Burge, 2007).
Gender, female vs. male 1.26 0.622.53
Marital status; widowed, 1.50 0.792.86 In this study, it was found that service complexity
separated or divorced vs. others for children with ID was highest between the ages of
Caregiver distress scale 2.03 0.974.25 11 and 14 years of age, compared with those children
(present vs. absent) under 10 years. This is consistent with other ndings
Victim of bullying 2.66 1.335.32
suggesting that older children receive more mental
Family Functioning Scale
(ref group none) health services than younger counterparts (Lavigne
Low 3.33 1.159.60 et al., 1998; Banta et al., 2013). It is possible that as the
High 8.33 2.0933.23 child reaches early adolescence, parents may no
Autism spectrum disorder 2.79 1.495.20 longer be able to cope with the difculty of caring for
Learning or communication disorder 3.72 1.917.23
a child with such complexities and thereby seek
additional services (Maes et al., 2003; Esbensen &
Seltzer, 2011). In situations where outpatient services
and parental support services are insufcient, coupled
with parental distress and older age of the child, out-
children living in traditional families, those living in of-home placement may be viewed by parents as the
non-traditional families have been found to utilise only option for many families. Indeed, previous
more mental health services and have more mental research has indicated that out-of-home placement is
health visits (Gaskin et al., 2008). Parental divorce more evident with children over 11 years of age (Barth
has also been found to increase the odds of children et al., 2007). As the child matures into adolescence,
receiving intervention for mental health needs certain behaviours (e.g. aggression, non-compliance,
(Brannan et al., 2003; Gaskin et al., 2008). deance and self-injury) may be more difcult to
As hypothesised, service complexity was related to manage and the parent may feel more threatened,
poor family functioning and caregiver distress. leading to the need for more intensive use of services.
Dysfunctional home environment, caregiver stress These ndings highlight the importance of case
and family conict predicted higher service utilisation management and family support services throughout
(Lavigne et al., 1998; Briggs-Gowan et al., 2000; the childs life span, but particularly as the child
Witwer & Lecavalier, 2008; Farmer et al., 2009). reaches adolescence, to ensure that families receive
Consistent with the literature, Diehl et al. (1991) the needed services to retain a child at home,
reported that families of children with ID experienced wherever possible (den Dunnen et al., 2013).
immense stress when caring for a child with special It was expected that behavioural problems such as
needs, promoting the need for increased respite, aggression, non-compliance, deance and harm
support groups and counselling for parents. This is toward others would be associated with higher levels
further complicated by the fact that parents of older of service use (Park et al., 2007; Farmer et al., 2008;
children with ID experienced more stress and less Merikangas et al., 2011). Contrary to expectations,
supports than parents of younger children (Suelzle & such behaviours did not predict service complexity in
Keenan, 1981). the multivariate model. It is possible that children
Children who have parents with high levels of with ID exhibiting high levels of aggressive behaviours
caregiver distress and problems with family functioning and disruptive actions are accounted for in other
tend to utilise more out-of-home placements such as variables within the model (e.g. out-of-home
residential treatment and inpatient care, factors placements). For example, Farmer et al. (2008) found
inuencing service complexity. Frequent disruptions that children who were placed in foster care and other

2017 MENCAP and International Association of the Scientic Study of Intellectual and Developmental Disabilities and
John Wiley & Sons Ltd
Journal of Intellectual Disability Research VOLUME 61 PART 11 NOVEMBER 2017
S. L. Stewart et al. Determinants of service complexity

out-of-home placements had more severe behavioural health services. Despite the knowledge that bullying is
problems than those of intact families. Similarly, disproportionately higher in children with ID than
children with high rates of mental health issues are non-ID children (Limber et al., 2016), the extant
often placed in foster care or group homes and literature of bullying toward children with ID is sparse
experience more volatility in care paths creating (Flynt & Morton, 2004; Rose & Monda-Amaya,
greater demands on the service system including 2012). Research has indicated that children are more
more expensive and intensive services (James, 2011). likely to experience bullying if they have a more severe
Moreover, child welfare involvement, poor family disability (Rose & Monda-Amaya, 2012),
functioning, a history of physical abuse, neglect, communication difculties (Cappadocia et al., 2012;
witnessing domestic violence and deliberate self- Rose & Monda-Amaya, 2012), poor problem-solving
injury predict out-of-home placement (den Dunnen abilities and low self-esteem (Cook et al., 2010).
et al., 2013). Children with ID are characterised by signicant
The presence and severity of self-injury have also cognitive decits, which are associated with
been noted to increase for those with more severe limitations related to learning, communication,
intellectual impairment in children (McTiernan et al., problem-solving and adaptive skill decits (Durkin,
2011). In the current study, approximately one third 2002; Carulla, 2011; Maulik et al., 2011) placing them
(34%) of the ID children with high levels of service at increased risk for bullying and victimisation
complexity were at risk for self-injury compared with (Taggart et al., 2010).
those children with low levels of service complexity
(22%). Non-suicidal self-harm in the general
Clinical implications
Canadian youth population is approximately 17%
(Nixon et al., 2008), demonstrating the severity of There are a variety of implications with respect to
self-harm in this particular sample. A strong both policy and practice. First, children with high
association has also been found between self-injury levels of co-morbidity such as autism spectrum
and both psychopathology and risk-taking behaviours disorder, ADHD, learning and communication
in addition to peer rejection, bullying/victimisation disorders require enhanced services due to their
and family maltreatment and neglect (Hay & special needs. Given the high levels of caregiver
Meldrum, 2010; Jutengren et al., 2011; Di Pierro distress associated with raising a child with
et al., 2012; Hamza et al., 2012; Baiden et al., 2017b). complicated needs, supporting families with respite,
There are several other negative consequences when in-home services such as family preservation,
children engage in self-injury including increased transitional supports and case management, should
isolation, costly medical care and restrictive treatment be implemented wherever possible. This is especially
practices (e.g. use of seclusion rooms and restraint true as the child becomes older as there is an
use). Moreover, children who engage in multiple increased likelihood of out of home placement as a
forms of self-injury often engage in aggressive, result of aggression, non-compliance, deance and
destructive forms of behaviour (Rojahn et al., 2008; self-injury. These behaviours become much more
Totsika et al., 2008; Minshawi et al., 2014) and are difcult to manage as the child becomes older,
more likely to receive emergency services (Hsu et al., increasing the need to provide more intensive
2009). supports and services.
In our study, children in the high service Given the strong relationship between bullying,
complexity group experienced victimisation by peers child disability and socio-emotional problems, school
more frequently than those in the low service programming and adult supports are crucial to
complexity group (36.3% and 16.6% respectively). reduce exposure to bullying for these vulnerable
Although this was a cross-sectional study and no children. Bullying is much more frequent with
causal inferences can be drawn, it is possible that the children exhibiting co-morbid conditions, especially
traumatic experience of bullying had a detrimental those with autism (Cappadocia et al., 2012). These
impact on the mental health and well-being of children are more likely to be exposed to bullying,
children (Tto et al., 2011; Copeland et al., 2013; particularly in fully inclusive classrooms, suggesting
Espelage & Holt, 2013) increasing the need for mental the need for increased prevention programming,

2017 MENCAP and International Association of the Scientic Study of Intellectual and Developmental Disabilities and
John Wiley & Sons Ltd
Journal of Intellectual Disability Research VOLUME 61 PART 11 NOVEMBER 2017
S. L. Stewart et al. Determinants of service complexity

especially in these educational settings (Zablotsky interRAI instruments tailored to specic service
et al., 2014). sectors (e.g. hospitals, mental health agencies and
schools) have been developed to facilitate service
system integration, allowing multiple applications
Study limitations
including improved service planning, resource
There are limitations to this study that must be taken allocation and case-mix systems as well as allow
into consideration. First, this is a small cross-sectional support transitions across the lifespan (Stewart &
study and precludes causal inferences. Second, the Hirdes, 2015; Stewart et al., 2015b).
generalisation of these ndings may be limited given
that the children within the study came from only four Acknowledgements
mental health facilities, one of which was a tertiary
care facility specialising in developmental services. The authors would like to thank the families who
Third, one would expect that older children participated in the study for their time and effort. We
experience more lifetime admissions than younger would also like to acknowledge the service providers
children by virtue of their age and this could have and agencies that provide services to children, youth
affected the ndings. Fourth, the service complexity and their families. We wish to thank the Child and
variable incorporated multiple services. These Parent Resource Institute for the assistance with
services were not weighted, and one may argue that a training and implementation efforts.
psychiatric visit may be more reective of specialised
services than that of a social work visit. Conict of interest
Finally, the outcome variable was dichotomised. A
The authors declare that they have no conicts of
majority of children had a score of 1 or 2, and only
6.7% had scores of 5 or higher. We initially grouped
service complexity into three levels: score 01
(49.1%), score 2 (23.3%) and score 3 or higher
(27.6%), and performed multinomial logistic References
regression. The determinants of service complexity of Armiento J., Hamza C., Stewart S. L. & Leschied A. (2016)
score 2 did not differ from those of score 01. Only Direct and indirect forms of childhood maltreatment and
learning or communication disorder was associated nonsuicidal-self-injury among clinically-referred children
with service complexity score of 2. To have sufcient and youth. Journal of Affective Disorders 200, 21217.
statistical power for multivariable analysis, we then Baiden P., Stewart S. L. & Fallon B. (2017a) The role of
adverse childhood experiences as determinants of non-
dichotomised service complexity into two groups:
suicidal self-injury among children and adolescents
low (scores 02) or high (scores 3 or higher). referred to community and inpatient mental health
Moreover, as a sensitivity analysis, we used service settings. Child Abuse and Neglect 69, 16376.
complexity as a continuous variable and conducted a Baiden P., Stewart S. L. & Fallon B. (2017b) The mediating
linear regression analysis. The determinants of effect of depressive symptoms on the relationship between
service complexity did not differ using it as a bullying victimization and non-suicidal self-injury among
children and adolescents: ndings from community and
continuous variable. Autism spectrum disorder,
inpatient mental health settings in Ontario, Canada.
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2017 MENCAP and International Association of the Scientic Study of Intellectual and Developmental Disabilities and
John Wiley & Sons Ltd
Journal of Intellectual Disability Research VOLUME 61 PART 11 NOVEMBER 2017
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2017 MENCAP and International Association of the Scientic Study of Intellectual and Developmental Disabilities and
John Wiley & Sons Ltd

Appendix A

Coding for service complexity with interRAI ChYMH-DD.

John Wiley & Sons Ltd

Hospital use,
Case emergency room use,
Items Formal care Focus of interventions Treatment modalities management physician visit.

Code for number

Code for types of issues that Code for treatment modalities Receives of times during the
Journal of Intellectual Disability Research

were a major focus of interventions used in last 30 days formal care last 90 days
Contact with formal in last 30 days (or since admission (or since admission coordination (or since last assessment
Instruction care provider if less than 30 days) if less than 30 days) services if less than 90 days ago)

Coding 0. No contact in last 3 years 0. No intervention of this type 0. Not offered and not received 0. No a. Inpatient acute hospital with
1. No contact in last 90 days, 1. Offered, but refused 1. Offered, but refused 1. Yes overnight stay (non-psychiatric)
S. L. Stewart et al. Determinants of service complexity

but contact in last 3 years 2. Not received, but scheduled 2. Not received, but scheduled B. Emergency room visit
2. No contact in last 30 days, to start within next 30 days to start within next 30 days (not counting overnight stay)
but contact 3190 days ago 3. Received 830 days ago 3. Received 830 days ago c. Physician visit (or authorised
3. No contact in last 7 days, 4. Received in last 7 days 4. Received in last 7 days assistant or practitioner)
but contact 830 days ago a. Life skills training e.g. a. Individual
4. Contact in last 7 days communication, money management b. Group
but not daily b. Social skills e.g. interpersonal c. Family or couple
5. Daily contact in last 7 days skills, etiquette d. Self-help/consumer group
a. Psychiatrist c. Family functioning e.g. positive
b. Social worker parenting, family cohesion
c. Psychologist, psychometrist and d. Anger management
psychological associate e. Behavioural management
d. Occupational therapist and f. Crisis intervention

physiotherapist g. Family preservation e.g. intensive

e. Behaviour therapist in-home programme
f. Recreation, art, music and h. Family support e.g. wraparound, respite
play therapist i. Medication management
g. Registered nurse
h. Child/youth counsellor
i. Child protection
j. Speech language pathologist
k. Dietician

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