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MENTAL

RETARDATION
Chapter 1

Historical Overview

Introduction Pre-Independence–Changing Life Styles

I dentification of persons with mental retardation in India


and affording them care and management for Changes in attitudes towards persons with
their disabilities is not a new concept in India. The disabilities also came to about with city life. The
concept had been translated into practice over administrative authorities began showing interest
several centuries as a community participative in providing a formal education system for persons
culture. with disabilities, particularly for families which had
The status of disability in India, particularly taken up residences in the cities.
in the provision of education and employment for Changes in the lifestyle of the persons with
persons with mental retardation, as a matter of need mental retardation were also noticed with their
and above all, as a matter of right, has had its
shifting from ‘community inclusive settings’ in
recognition only in recent times, almost after the
which families rendered services to that of services
enactment of the Persons with Disabilities Act
provided in ‘asylums’, run by governmental or
(PWD), 1995.
non-governmental agencies (Chennai, then
Pre-Colonial India Madras, Lunatic Asylum, 1841).

Historically, over different periods of time It was at the Madras Lunatic Asylum,
and almost till the advent of the colonial rule in renamed the Institute of Mental Health, that
India, including the reigns of Muslim kings, the persons with mental illness and those with mental
rulers exemplified as protectors, establishing retardation were segregated and given appropriate
charity homes to feed, clothe and care for the treatment.
destitute persons with disabilities. The community
Special schools were started for those who
with its governance through local elected bodies,
could not meet the demands of the mainstream
the Panchayati system of those times, collected
schools (Kurseong, 1918; Travancore, 1931;
sufficient data on persons with disabilities for
Chennai, 1938). The first residential home for
provision of services, though based on the
philosophy of charity. With the establishment of persons with mental retardation was established in
the colonial rule in India, changes became Mumbai, then Bombay (Children Aid Society,
noticeable on the type of care and management Mankhurd, 1941) followed by the establishment
received by the persons with the influence from of a special school in 1944. Subsequently, 11 more
the West. centres were established in other parts of India.

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Post-Independent India–Current Indian Education Commission, 1964-66
Scenario The Indian Education Commission,
1964-66 made a clear mention of the presence of
Establishment of Special Schools
only 27 schools for persons with mental retardation
Article 41of the Constitution of India (1950) in the entire country at that time.
embodied in its clause the “Right to Free and
Compulsory Education for All Children up to Age In 1953, training teachers to teach persons
14 years”. with mental retardation was initiated in Mumbai
by Mrs. Vakil.
Many more schools for persons with mental
retardation were established including an In 1971, special education to train persons
integrated school in Mumbai (Sushila Ben, 1955). with mental retardation was introduced in Chennai
at the Bala Vihar Training School by Mrs. M.
Notwithstanding this obligatory clause on Clubwala Jadhav.
children’s mainstream education, more and more
special schools were also being set up by non- In the same year, the Dilkush Special School
governmental organizations (NGOs) in an attempt was established in Mumbai initiating special
to meet the parents’ demands. teachers’ training programs.
The various Acts passed and the policies
Special Schools touching the lives of the disabled are dealt with in
Establishment of special schools in the Chapter 11, Policies and Programmes.
country since independence is shown below:
Year Number of Special Schools
Conclusion
for Children with This introductory chapter is intended to
Mental Retardation dispel the myth that very few services were available
1950 10 in India until the period of the Colonial rule.
1960 39
With the rights approach established through
1970 120
several legislations, the quality, accessibility,
1980 290
affordability and availability of an array of services
1990 1100
have been strengthened.
2007 More than 3000

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Chapter 2

Definition, Incidence and Magnitude–


Mental Retardation in India

Introduction change between 1959 and 1983, to include both

I nternationally, the definition of mental measured intelligence and adaptive behavior.


retardation has moved away from a medical With the WHO definition, which is in use
model to that of an educational model which is in Britain, and that of the Persons with Disabilities
functional and support based and emphasizes the Act, 1995 in India, the AAMD definition (1983) is
rights of the individual. more prevalent among the service providers and
According to the Persons with Disabilities (Equal the institutions, the usage being more of academic
Opportunities, Protection of Rights and Full Participation) interest than for operational reasons.
Act, 1995, enacted in India, mental retardation The AAMD (1983) definition reads “Mental
means a “condition of arrested or incomplete retardation refers to a significantly sub-average
development of mind of a person which is specially general intellectual functioning resulting in or
characterized by sub-normality of intelligence”. associated with concurrent impairments in adaptive
behavior and manifested during the developmental
Field workers, parents and professionals in
period” (Grossman, 1983). It is a more functional
India opine that this definition has scope for
definition which stresses the interaction between
improvement.
the person’s capabilities, the environment in which
To this date, a systematic enumeration of the the individual functions, and the need for support
number of persons with disabilities in the country systems.
has not been made, the reason being the large
The AAMR (1992) definition of mental
geographical area. Data on educational and other
retardation, manifesting before age 18, refers to a
needs of pre-school, school going children, youth, substantial limitations in present functioning,
adults and senior citizens is not available. characterized by significantly sub-average
intellectual functioning which exists concurrently
Mental Retardation: Changing Concepts
with related limitations in two or more of the
The American Association on Mental Deficiency following adaptive skill areas: communication, self-
(AAMD) care, home living, social skills, community use, self-
direction, health and safety, functional academics,
The American Association on Mental
leisure and work.
Deficiency (AAMD), now the American
Association on Mental Retardation (AAMR), and In adopting this definition and the
also known as the American Association on accompanying classification system, AAMR (1992)
Intellectual Disabilities (AAID), has made a formal suggests the mild, moderate, severe and profound

227
classification in the previous definitions to be of Mental Disorders (DSM-IV); 1994, also retains the
substituted with ‘levels’ of support needed by an essence of the 1983 AAMD definition of mental
individual: intermittent, limited, extensive, and retardation as well as the levels of severity of mental
pervasive. retardation.
These terms may be summarized as below: Further, DSM-IV and the International
• Intermittent: Support of high or low Statistical Classification of Diseases and Related Health
intensity is provided as and when Problems, Tenth Revision (ICD-10) have coordinated
needed. Characterized as episodic or sections on mental and behavioral disorders
short-term during life-span transitions. concurring with a common definition and
• Limited: Supports are provided classification system for mental retardation.
consistently over time, but may not be This coordination specifies four degrees of
extensive at any one time. Supports may severity reflecting the level of intellectual
require fewer staff members and lower impairment.
expense than more intense levels of
support. The AAMR 2002 definition reads “Mental
retardation is a disability characterized by
• Extensive: Supports characterized by
significant limitations, both in intellectual
regular involvement (daily) in at least
functioning and in adaptive behaviour, as expressed
some environments (work or home) and
in conceptual, social, and practical adaptive skills,
not limited (example: long term support
the disability originating before the age of 18.
and long term home living support).
• Pervasive: High intensity supports are A complete and accurate understanding of
provided constantly, across mental retardation implies that mental retardation
environments, and may be of life refers to a particular state of functioning, which
sustaining and intrusive nature. begins in childhood, having many dimensions, and
Pervasive supports typically involve a affected positively by individualized supports.
variety of staff members.
As a model of functioning, it includes the
This definition essentially restates the 1983 contexts and environment within which the person
AAMD definition except that it raises the functions and interacts, requiring a
developmental period to age 22, consistent with multidimensional and ecological approach that
the federal definitions of developmental disabilities. reflects the interaction of the individual with the
environment.
The Diagnostic and Statistical Manual-IV
(DSM-IV) - 1994; International Classification of The outcomes of that interaction are with
Diseases (ICD-10) regard to independence, relationships, societal
The American Psychiatric Association in its contributions, participation in school and
fourth edition of the Diagnostic and Statistical Manual community and to personal well being.

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Classification of Persons with Mental Retardation
Based on the 1983 AAMR definition, the operational classification for persons with mental
retardation is as follows:
Level of Retardation IQ Range Approximate percentage
Stanford-Binet Wechsler Scales of persons with mental
and Cattell Tests retardation
Mild 52 – 67 55 – 69 89
Moderate 36 – 51 40 – 54 7
Severe 20 – 35 25 – 39 3
Profound 0 – 19 0 – 24 1

Educational Classification
In the special education centres in India, the classroom classification in operation is as shown
below:

I. Pre-Primary (A) level


- Chronological ages 3 – 6 years
- Mental ages Upto 5 years
II. Pre-Primary (B) level
- Chronological ages Over 6 years
- Mental ages Around 4½ years
III. Primary level
- Chronological ages 7 – 10 years
- Mental ages 5 – 7 years
IV. Secondary level
- Chronological ages 10 – 13 years
- Mental ages 7 – 9 years
V. Pre-Vocational level
- Chronological ages 14 – 16 years
- Mental ages 8 + years

Most of the classification systems define intelligence due to lack of standardization on such
mental retardation with emphasis on significantly population.
sub-average intellectual functioning of the
No standard test has been so far developed
individual (assessed by the standardized
suited to the Indian cultural milieu.
intelligence tests).
In India, where a majority live in rural areas, Certification
engaged mostly with traditional, semi-skilled A disability certificate is issued by a Medical
vocations, the adapted Indian intelligence tests have Board duly constituted by the Central and the State
limitations in assessing the exact levels of Governments.

229
The State Government will constitute a in respective areas of disability, distance from the
Medical Board consisting of at least three members residence to the assessment and certification place,
out of which at least one may be a specialist in the lack of guidelines on the standard test and the
concerned field. person to be used for assessment.
In need of correction in the certification No indigenously established behavior norms
process are: limited availability of the specialists are available.

Table 1: Characteristics of Persons with Mental Retardation

Severity Mild Moderate Severe Profound

Pre-school Can develop social Can talk or learn to Poor motor Gross retardation,
and communicative communicate, poor development, minimal capacity for
skills, minimal social awareness, fine speech functioning in
retardation in motor development. minimal, sensory motor areas
sensory- motor Profits from training, generally needs running care.
areas, often not self help can be unable to
distinguished from managed. profit from
those normal until training, self
late age. help little, no
communicative
skills.

School age Can learn academic Can profit from Can talk or Some motor
6–20 years skills up to training in social and learn to development
approximately 6th occupational skills to communicate, present. Many
grade level by late progress beyond 2nd can be trained respond to minimal
teens. Can be grade level in in elementary to limited training in
guided on social academic subjects, skills and can self help.
skills. may learn to travel profit from
alone in familiar systematic
places. training.

Adult 21 & Can usually achieve May achieve self May contribute Some motor and
over. social and maintenance in partially to self speech development
vocational skills unskilled, under maintenance may be achieved,
adequate to sheltered conditions, under complete but very limited self
minimum, self needs supervision supervision, care needs are
support but may and guidance when can develop achieved.
need guidance and under mild social or self protection
assistance when economic stress. skills to a
under social or minimal useful
economic stress. levels in
controlled
environment.

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Incidence and Magnitude of Mental NIMH mentions that 2% of the general population
Retardation in India is MR. Three quarters of them are with mild
retardation and one-fourth are with severe
Estimates in India retardation (Panda, 1999).
Most available data on the prevalence of
A door-to-door survey conducted in Tamil
mental retardation in the country is derived from
Nadu in the districts of Kancheepuram (Rajaram-
the psychiatric morbidity surveys conducted by the
Dist. Collector), Ramanathapuram (Vijay Kumar-
mental health professionals in specific or
Dist. Collector), in 2001 and earlier in 1984 in
circumscribed geographical areas or on target
Tiruchirapalli in a population of 50,000,
populations, such as rural-urban, industrial
(Jeyachandran) indicates a prevalence of 1 per
population and educational institutions.
1000.
The prevalence rates of mental retardation,
some from the school population, some from the Difficulties in Collecting Accurate Prevalence Rates
general population, is reported from 1951 to 1994, A large, population which is diverse in
in the range of 0.07 to 40 per 1000. The prevalence psychosocial, educational, economical and cultural
rates for mental retardation in the school background, limited number of specialists and lack
population and the general population, rural and of standard tools for assessment are the main
urban, based on psychiatric morbidity survey difficulties.
ranges from 0.1 to 140. The sample selected has
been a skewed one. Those with mild mental retardation remain
unidentified as they could be involved in a semi-
The variation in these figures does not give skilled vocation and in a structured and restricted
a clear picture of the situation. environment.

The National Sample Survey Organisation (NSSO) Government of Tamil Nadu Initiative
The National Sample Survey Organisation The Government of Tamil Nadu has
(NSSO) under the Department of Statistics, initiated creation of a data base on disabilities (2007)
Government of India conducts large scale survey on the population with a door-to-door survey in
for socio-economic planning and policy all its districts.
formulation. The first large scale attempt to collect
Standard formats have been developed to
information on the prevalence of developmental
identify disabilities as listed in Persons with
delays was made in the 47th round of survey by
Disabilities Act and the National Trust Act.
NSSO.
The survey is based on the etiology of each
Data obtained from various sources indicate
of the listed disabilities. All the District Disability
that the prevalence rate of mental retardation is
Rehabilitation Officers, village health workers,
about 20 per 1000 general population while the
Anganwadi workers, the CBR workers, NGOs,
prevalence of developmental delays is about 30 per
working in the field of disability, members of the
1000 in the 14 year-old population.
National Cadet Corps and retired veterans from
In rural areas, the incidence of mental the armed forces received the required training for
retardation is 3.1% and in urban, it is 0.9%. The the survey.

231
Estimates in India (NSSO) under the Department of Statistics,
In India, the incidence and magnitude of Government of India conducts large scale studies
mental retardation needs to be looked into. and surveys for socio-economic planning and
policy formulation. The first large scale attempt to
Theoretically, the horizon of special
education is often restricted only up to the age of collect such information on the prevalence of
18 years for persons with disabilities. “Schooling” developmental delays was made in the 47th round
or attendance in a class room alone is often of survey by NSSO carried out between July-
considered ‘education’ even among the literate December, 1991, on children age group 0-14
population of the nation. years, coming from 4,373 villages and 2,503
urban blocks.
NSSO Survey, 1991
The National Sample Survey Organisation

Table 2: Prevalence Studies Based on National Sample Survey Organisation

Sl. No. Investigator/s Year Target Population Place of Study Prevalence


Rate/1000

1. NSSO 1991 Stratified rural sample All India 31.0

2. NSSO 1991 Stratified urban sample All India 9.0

Data obtained from various sources indicate In the Census of India, 2001, an attempt has
that the prevalence rate of mental retardation is been made to assess the disability population in
about 20 per 1000 general population, while the the country belonging to different categories.
prevalence of developmental delays is about 30 per Unfortunately, no reliable information could be
1000 in the population of children up to the age of obtained from such data as regards mental
14 years. retardation since it has been clubbed with mental
illness, a term alien to mental retardation in its
Conclusion current conceptualization.
It is difficult to collect the accurate prevalence
rate of mental retardation in a country like India
reasons for which have been given above.

232
Chapter 3

Early Identification and Prevention of


Mental Retardation

Introduction Handicapped (NIMH), Secunderabad, appeared

W ith the implementation of the Persons with in RCI: Status of Disability in India, 2000.
Disabilities Act (PWD), 1995 mental A more systematic process and procedure has
retardation has been recognized as a disability with been the pooling of a battery of tests on clinical
an identity of its own. Earlier, data on mental investigations by the NIMH, for identification and
retardation had been clubbed with data on mental screening of persons with mental retardation. They
illness. include pre-natal, neonatal and post-natal
It is only in the recent years that early diagnostic procedures:
identification of persons with mental retardation (i) Pre-natal Procedures
has become possible.
• Blood tests for the pregnant mothers for
Systematic thinking on screening and any anemic condition, diabetes, syphilis,
identification emerged consequent to the National Rh incompatibility and neural tube
Policy on Education (NPE), 1986, even though defects in the foetal stage.
working groups had been set up even as early as • Ultrasonography (during pregnancy)is
1981 during the International Year of the Disabled carried out in the second trimester of
Persons (IYDP) by the then Ministry of Welfare. pregnancy to detect such disorders as -
Early identification includes screening, early neural tube defects, hydrocephaly,
diagnosis and parent counseling. microcephaly, hydrencephaly,
Information on early identification and holoprosencephaly, prosencephaly and
prevention is also presented in Chapter 6 on ‘Array some cerebellar lesions. Intra-uterine
of Services’ and other chapters. growth retardation can also be detected
through such measurements as foetal
Screening biparietal diameter, crown rump length
Screening is a procedure for an initial and transverse abdominal diameter.
identification of persons with mental retardation • Aminocentesis is indicated in cases of foetal
and for a follow up with assessment. chromosomal aberration, congenital
metabolic errors and open, neural tube
Screening Procedure defects, severe Rh incompatibility and
Many of the screening techniques collated also in cases of advanced maternal age
by National Institute for the Mentally with previous birth history of an

233
abnormal child. Aminocentesis is a • Screening for visual impairments (visual
procedure for purposes of early acuity, fundus examination,
identification and primary prevention retinoscopy).
for many genetic abnormalities. • Screening for hearing impairments
• Foetoscopy is done during second (Tympanogram, BERA.)
trimester of pregnancy in diagnosing • Ultra sonogram.
certain physical anomalies, metabolic
• CT scan (computerized tomography).
disorders or biochemical abnormalities.
• MRI (Magnetic Resonance Imaging) for
• Chorionic Villous Sampling where a biopsy
intra-cranial pathology and structural
of the chorionic villi is performed either
abnormalities.
transabdominally or vaginally. The
sample is then subjected to karyotyping • Ultra Sound Examination: The technique
and enzyme determination. can be used to detect displacement of
brain midline structures, thickness of
(ii) Neonatal and Post-natal Screening and Diagnostic
brain substance, pathological cavities in
Procedure
the brain. Real-time ultrasound
Blood and urine examinations are conducted examination of the head can reveal
in the neonatal period in all suspected cases and intracranial haemorohage in the
with a previous history of mental retardation in newborn.
the family. • Biochemical Tests in neonatal screening
Cretinism is another condition which can be for identifying metabolic disorders.
diagnosed in the neonatal period and necessary • Electro Encephalography (EEG): EEG is
treatment given. useful not only in epilepsy, but in many
• Apgar Score at one minute after delivery other cases of mental retardation and
is an index of asphyxia and the need for organic brain lesions. In certain cases it
assisted ventilation. also helps in localization of lesions and
the severity of a cerebral damage.
• Urine screening for metabolic errors -
Incidence of abnormal EEGs is higher
PKU (Phenyle Ketoneuria).
in cases of mental retardation associated
• Blood biochemistry tests for cretinism, with epilepsy, encephalitis, severe degree
rickets, jaundice. of mental retardation and brain damage
• Blood antibody titres to detect sustained before birth or during birth or
infections. in the early period of infancy.
• Chromosomal analysis for Down • Computerised Tomography (CT): There
Syndrome, deletion of syndromes. are many abnormalities which can be
• Neonatal neuro behavioural detected by CT scan of the CNS,
assessments. such as, anoxia of tissue, intracranial
haemorhage, hydrocephalous and
• EEG electroencephalogram for seizure
congenital anomalies like
disorder.
holoprosencephaly, a-genesis of

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corpus callosum, Arnold chiari Screening Tools
malformations, congenital cysts, The NIMH has developed quick Screening
calcifications, etc. Schedule I (Below 3 years) and Screening Schedule
• Magnetic Resonance Imaging (MRI): This II (3 to 6 years) shown in Table 1.
screening helps in identifying a large
number of persons with suspected
disability in a limited time period.

Table 1: Screening Schedule I

Stage Child’s Progress Normal Development Delayed Development:


No. If not achieved by the period

1. Responds to name / voice 1-3 months 4th month


2. Smiles at others 1-4 months 6th month
3. Holds head steady 2-6 months 6th month
4. Sits without support 5-10 months 12th month
5. Stands without support 9-14 months 18th month
6. Walks well 10-20 months 20th month
7. Talks in 2-3 word sentences 16-30 months 3rd year
8. Eats/drinks by self 2-3 years 4th year
9. Tells his name 2-3 years 4th year
10. Has toilet control 3-4 years 4th year
11. Avoids simple hazards 3-4 years 4th year
Other factors
12. Has fits Yes No
13. Has physical disability–what? Yes No

• Compared with other children, did the child • Does the child have difficulty in learning to
have any serious delay in sitting, standing or do things like other children of his age?
walking? • Is the child not able to speak at all? (cannot
• Does the child appear to have difficulty in make himself understood in words/say any
hearing? recognizable words).
• Does the child have difficulty in seeing? • Is the child’s speech in any way different from
• When you tell the child to do something, does normal? (not clear enough to be understood
he seem to have problems in understanding by people other than his immediate family).
what you are saying? • Compared to other children of the same age,
• Does the child sometime have weakness and/ does the child appear in any way backward,
or stiffness in the limbs and/or difficulty in dull or slow?
walking or moving his arms?
If an answer to any of the above items is
• Does the child sometimes have fits, becomes
rigid, or lose consciousness? ‘yes’, then suspect mental retardation.

235
Other Screening Tools • The revised Madras Developmental
Some of the other popularly used tools in Programme System Behavioural Scale
India include MDPS-A curriculum based assessment
checklist (1975) is suitable for identification
• Cooperative preschool inventory- purposes.
Caldwell.
• Croydon Scales (Screening Checklist) Screening of Childhood Disabilities
(Wolfendale & Bryans). A multi-centered study carried out in 1994
• Denver Developmental Screening Test at NIMH revealed that about 50% of parents
(Frankensberg, Dodds and Fandal). recognize the delayed development or mental
retardation of their children below the age of 2 years
• Early Childhood Assessment: A criterion
while 35% of the parents recognized only after the
referenced screening device (Schmaltz,
age of 2 years.
Schramn and Wendt).
• AGS Early Screening Profiles (Harrison, Screening Approach in the Community
et al.). The screening approach in the community
• Developmental Indicators for the involves sorting out children who are at risk and
Assessment of Learning-R (Mardell, et the diagnostic evaluation of those identified in
al.). screening. Bio-chemical/Metabolic Screening in
• Early Screening Inventory (Merisels, et Persons with Mental Retardation is in use, but not
al.). available freely to the public.

• Brigance ‘K’ and ‘T’ Screen for Selecting Appropriate Screening Measures
Kindergarten and First Grade
For screening or an early detection program,
(Brigance).
appropriate screening measures must be selected.
Indian Screening Tools • A screening device should meet the
• Developmental Screening Test (DST) by technical criteria of standardization,
Bharat Raj is a widely used screening tool by reliability, validity, and normative data.
professionals. The NIMH schedules noted • The screening instrument should also
earlier are used for further referral. be culturally appropriate, acceptable to
• Upanayan Early Intervention Programming the participants and cost effective.
System (1987). • Screening tests must have established
• Functional Assessment Check List for sensitivity and specificity to be valid.
Programming (FACP) 1991.

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Commonly Used Screening Instruments
Some commonly used screening instruments standardized/developed in India are shown in
Table 2.
Table 2: Screening Instrument

Sl. No. Name of Instrument, Age Range, Administration Time Author (s) Year

1. Developmental Screening Test Bharat Raj


1-15 years; 10 min. 1977, 1978, 1983

2. Gesell Drawing Tests Verma, Dwarka & Kaushal


1 -8 year; 15 min. 1972

3. Infant Intelligence (Development) Kulshreshta


Scale 0-3 years; 30 min. 1975

4. Mental and Motor Growth of Indian Babies Pramila Phatak


1-2 years; 15-20 min. 1976, 1977

5. Vineland Social Maturity Scale Malin


0-15 years; 15-20 min. 1970

The developmental approach is generally Assessment Tools


used for developmental assessment and for In addition, educational assessment tools for
planning early intervention programs. children with mental retardation used are:

Developmental Schedules • Madras Scale (1968).

The most commonly used developmental • Madras Developmental Programming


System (MDPS, 1975).
schedules are:
• Upanayan Early Intervention
• Gesell Developmental Schedules. Programme (1987).
• Baroda - Bayley Scales of Infant • Functional Assessment Checklists
Development. (1994) by National Institute for the
• Motor and Mental Development of Mentally Handicapped.
Indian Babies (Pramila Phatak). • Behavioural Assessment Scale for Indian
• Kulshrestha Infant Intelligence Scale. A Children with M.R. (BASIC-MR) –
focus in India in recent year is the NIMH.
importance of assessment for planning • ARAM- NIMH
the teaching schedule by the teacher.
Primary Health Centres (PHCs)
An informal functional assessment guide for
Primary Health Centres as well as the District
all disabilities has been developed (NCERT, 1990) and Municipal/Government hospitals are equipped
for use by teachers. with maternal and child health services.

237
Documentaries on prevention, early • Prenatal diagnosis where preliminary
identification, and the support systems in the care investigations are carried out, blood and
and management are available for screening in urine tests investigations to assess the
many hospitals in the metropolitan cities. Research foetal abnormalities through ultra
laboratories in the country are equipped for genetic sonography, radiography, and
testing and counseling. aminocentesis.
• Immunization to the mother for
Prevention preventing illnesses and infections
Prevention refers to the measures taken to leading to disability in the foetus.
prevent the disability from occurring.
Follow up action is provided through
The World Health Organisation (WHO), periodic checkups, prompt treatment and effective
American Association for Mental Retardation management plan with a balanced diet and periodic
(AAMR), American Association on Mental health checkups.
Deficiency (AAMD), International Classificatioon
Natal Prevention relates to
on Deficiency (ICD), Diagnostic and Statistical
Manual (DSM-IV) definitions of mental • Delivery conducted under hygienic
retardation relate to three levels of prevention: conditions by a trained person and/or in
a hospital, to prevent breech delivery,
(i) Primary level of prevention is carried out
asphyxia, prematurity with low birth
by doctors and health professionals to
weight, occurrence of jaundice, and
prevent manifestation of the disability.
other post-illnesses in the child.
(ii) Secondary level prevents the
• Care of new borns at high risk for mental
manifestations of additional disabilities
retardation in well equipped neonatal
and regression.
intensive care units; a close follow up to
(iii) Tertiary level mitigates the impact of identify delays and abnormalities in
disability on social isolation, development; facilitating interventions
stigmatization of the handicap.
and corrections at the earliest thereby
Based on the principles of early identification reducing the severity of handicap.
and intervention, prevention of mental retardation
Postnatal Prevention relates to
is taken as early as possible.
Neonatal screening with simple blood and
Prenatal Prevention relates to
urine tests for metabolic abnormalities and
• Dealing with causal factors such as Rh hypothyrodisim, associated conditions that lead to
incompatibility; maternal illness, mental retardation.
infections and other high risk conditions,
such as malnutrition in mother and child National Health Policy, 1983—Optimal
during the first trimester of pregnancy, Prenatal Care
environmental and occupational hazards Under the maternal and child health
and consanguinity. programs, the National Health Policy, 1983 in

238
the context of global objective of Health for All by Role of Non-Govt. Organizations in
2000 A.D. has, inter alia, set the following points: Early Detection/Prevention
• Reduction of infant mortality to less than The NGOs have demonstrated their
60/1000 live births: Prophylaxis scheme leadership in services from prevention to
against nutritional anaemia among rehabilitation, and especially in early intervention.
pregnant and lactating women which is They have also coordinated with the government
one of the major health problems in carrying out awareness program by taking out
affecting intrauterine growth of the rallies and demonstrations through street plays with
foetus. primary school children, their teachers, and head
masters. Information on early identification and
• National AIDs Control Program: The
prevention is also presented in a tabular form in
Government has set up five regional
Chapter 6 on ‘Array of Services’.
S T D - c u m - H I V- d e t e c t i o n - c u m
prevention centers and STD reference
Conclusion
laboratories at Kolkata, Hyderabad,
In India, like in other developing countries,
Chennai, Nagpur and Delhi to deal with
early detection of mental retardation has been
infection, leading to disability.
achieved at the national level. In recent times,
• National Iodine Deficiency Disorders Control
creation of awareness and education has facilitated
Program: The iodine deficient women
the development of positive attitudes in the family
frequently suffer abortions and even still
and in the community. Learning environments and
births. Their children may be born
experiences that promote independence and
mentally retarded or as cretins. In India
inclusion in the community have now become
alone, 167 million people are at risk of
mandatory.
Iodine Deficiency Disorder (IDD). The
program aims at iodizing all marketed The Rehabilitation Council of India (RCI)
salt in the country in a phased manner. has initiated early childhood special education
After launching the 100% Centrally towards the provision of comprehensive services
Sponsored National Goitre Control in the prevention, intervention, care and
Program in 1962, it has now been management of children with mental retardation.
rechristened in April 1992 as the
National Iodine Deficiency Disorder
Control Program.

239
Chapter 4

Early Childhood Care and Intervention

Introduction is the impact on the child. Positive

T he right development of the child must be attitudinal changes in parents may be


ensured during the early years when great seen within six months’ of
changes of long-lasting influence take place. This commencement of training.
must be noted by the governments while making On the importance of early intervention,
policy decisions. Madhuram Narayan Centre for Exceptional
Children (Jeyachandran, Jaya Krishnaswamy)
Information on early childhood care and
observed that:
prevention is also presented in a tabular form in
Chapter 6 on ‘Array of Services’. • Earlier the intervention, better are the
results; it limits disabilities; it helps in
The Rationale for Early Intervention mainstreaming and in appropriate
Programs–0-3 Years placement in special schools; fosters the
Several studies conducted overseas and in emergence of parents’ networks and the
India, between 1939 and 1968 and those in the provision of special schools in the
recent decades, i.e., between 1986 and 1998 have community.
shown the importance of early intervention and • Individualized Family Services Program
its effects on the developing child. The French can be effective.
psychologist, Robert Lafon’s statement, “If you are
• An initial total involvement, from birth
slow, you simply have to start earlier”, is relevant
to two years, with gradual weaning, helps
to early intervention programs.
the parents become effective carry over
agents at home.
Importance of Early Identification
Studies Conducted in India Early Childhood Care and Education
Jeychandran (1968) conducted The Madras (ECCE)
Project, the first in India, concluded as follows:
Early Brain Development
• It is feasible to train mothers in day care
At birth, a baby has about 100 trillion brain
centres; the longer the training the more
cells which must be organized into networks that
positive and lasting the effect on the
require trillions of connections and synapses
children. The trained mother gains a
between them. Stimulation given to the foetus as
caring position as a carry-over agent.
well as to the new born baby speeds up myelination
• Greater the parental participation, faster and networking in the brain.

240
National Policy on Education, 1964 • correct infant feeding practices,
The National Policy on Education, 1964 has immunization of infant from
given much importance to Early Childhood Care communicable diseases,
and Education (ECCE), viewing ECCE as a crucial • mother’s education in the child care,
input in the strategy of human resource
• early childhood stimulation, and
development (HRD). It is a feeder and support
program for primary education and a support • health and nutritional support
service for working women of the disadvantaged throughout.
sections of the society. Since it has a complex integral function,
Emphasis has been given to: workers with ECCE training are required in
integrated work sites or ECCE centers where the
• establishing linkages between the essential service flow to the young children through
Integrated Child Development Services the period of their growth and preparation for
(ICDS) and other ECCE programs, formal education takes place.
• the scheme of assistance to voluntary
organizations, for conducting ECCE To tap the full advantage of well integrated
centres, ECCE activities and associated programs, efforts
are being directed at coordinating the functioning
• activities of the Balwadis and Daycare
of various agencies which are striving to meet
centers run by voluntary agencies with
different needs of young children.
government assistance, and
• the pre-primary schools/anganwadis and The Department of Women and Child
the maternal and child health services Development which works in collaboration with
through PHC/sub-centers. the Labour, Education, Rural Development
Departments, is the nodal agency for ECCE
ECCE – A Total Development programs.
The ECCE involves the total development,
i.e., physical, motor, cognitive, language, Community as well as parental participation
emotional, social and moral of the child from is enlisted wherever possible, in resource
conception to about six years. mobilization, planning, and implementation.
Adequate representation of mothers is organized.
The development process during this period
includes: The role of capable voluntary agencies is
emphasized to create a wide and rich network of
• mother’s care during pregnancy (ante-
resources of ECCE.
natal health check-up; nutritional care
of mother during lactation; nutritional Ongoing programs/schemes, such as, ICDS,
support and control of anaemia), ECCE centers, Balwadis run by voluntary agencies,
• hygienic and skilled birth attendance, Pre-Primary Schools and Day-care Centers that
immunization for prevention of tetanus reflect a concern for the holistic development of
following delivery, young children are being improved.

241
Early Intervention for Children with adolescents and adults in planning for
Mental Retardation parenthood and increasing availability of
Of all the disabilities, mental retardation is parental care.
the one neglected the most. Those with mental Secondary prevention seeks assessment of the
retardation and in the age group six years and under, magnitude of the disability or delay, reducing
constitute a significant percentage of children or eliminating its future impact on both the
which is substantial in view of the large population individual and the society.
in the country.
In tertiary prevention, the effects can be lessened
Awareness among the public in India, about and the development of the individual
the need to provide services to infants and children fostered.
with mental retardation has come only in the last Challenges of early intervention are:
decade.
• Infant tests not highly predictive of later
With this awareness, at present, service functioning though they indicate a trend.
centres are available, some providing exceptionally • Individual variations in the influence of
good services. But there are only 198 centres environmental conditions and early
offering early intervention programs for the entire intervention on the long term effects of
country, leaving the demand largely unmet. illness and other disabling conditions.
Need for a Comprehensive Early • Difficulties in the assessment of
Intervention Program disability in infants and toddlers.
A child with developmental delays needs an • Absence of data on the number of
individualized program taking into account the children with special needs and register
family needs, preferences and supports. of services.
Family priorities are best satisfied with every Parental-Child Development/Emotional
member of the intervention team, the special Support/Respite Care/Parent
educator, the parent or care-giver and the members Organisations/Social Services
of the interdisciplinary team of experts knowing How well the child has adapted himself/
what the priorities are and working in
herself in performing his/her daily living activities
co-ordination and collaboration.
and how he has been helped to be “included” in
Early intervention is not just programming normal settings by the other members of the
on detection of delay or disability, but it lies in the community with cultural pluralism speak for the
prevention of developmental delays - primary, success of an early intervention program.
secondary and tertiary prevention.
Need for Social Audit on Program Implementation
Primary prevention calls for systemic and
Services
societal changes in nurturing children during
their development, elimination of specific In addition to the challenges cited above,
conditions that lead to a later disability, the absence of a clear-cut social audit on
counseling and guidance services to program implementation that directly benefit

242
the child receiving the services has been felt in human enterprise – the provision of services to
the country. persons with disabilities.
Several services are available each with a
Early Intervention Programs
different type of program. There are those
Mathuram Narayan Centre for Exceptional Children
• that are highly structured, and offer
(MNC), Chennai
intensive individualized teaching
directed at specific goals for each Training at the Centre, which was established
in 1989, is based on the Upanayan Early
child,
Intervention Program developed indigenously by
• that enhance development by Indchem Research and Development Laboratory
counteracting delay or impairment, to fulfill the need for a structured program,
• that are “catch all” ranging from group culturally appropriate, suitable to the Indian socio-
play, movements, music, dance, art, and economic needs.
any other, The program is the first systematic one
• that are operating in a vacuum with no developed in the country which has since been
certainty that the children in need are translated and in use in many centres in the country.
actually benefiting. The Centre is the first of its kind in the
A social audit will give certainty and country, providing services to over 4,000 children
at present. Accompanied by their mothers, about
directions to the service providers enabling them
150 children attend the Centre everyday.
to meet the needs of the child with disability. Of
late, there has been a move in this direction by the Parental involvement is the foundation of the
Government of India. program at the Centre where the children are
trained by their mothers (or close relations in a
India has a vast resource in human potential few cases), turned into carryover agents by the
and numbers. Many of the challenges can be met special educators. Parents practice yoga and pranic
by involving this rich resource. healing regularly with their children.

Family Involvement and Community National Institute for Mentally Handicapped


Participation—A Basis for Developing (NIMH), Secunderabad
Intervention and Providing Services The department of special education and
In a family-oriented approach, every member medical rehabilitation division under the NIMH
of a family is actively involved in the management takes up early intervention program for children
of a child with disability and towards this goal, with mental retardation.
effort- “prayaas” and, practice -“sadhana”, the Infants and toddlers suspected or at risk for
family members are educated, directed, facilitated delayed development in the age group of 0-3 years
and empowered by the professionals who are given early intervention services once a week
cooperate with them in providing services. Families by a multi-disciplinary team of experts. The parents
and professionals are then collaborators in the are given guidance regarding immunization,

243
nutrition, feeding, motor development, speech and based training.
language development and psycho-social
There is a need, therefore, for a peripatetic
interventions.
trainer and/or a neighborhood center for day care
A set of brochures has been developed as a needs to be looked into realistically. There is a
part of the Indo-US project on early intervention further need to have separate personnel at grass
to intra-uterine growth retardation (IUGR) root level to attend to early stimulation programs
children at risk for developmental delays. for persons with mental retardation for sustainable
intervention.
A book in simple language and illustrations
for children with special needs (Narayan, 1999) Others that could also be directed for
has been developed. It is very useful to parents and effective interventions are: The Public Health
teachers in readying children with mental Centre (PHC)-based or hospital-based program,
retardation for regular schools. District Rehabilitation Centre (DRC)
rehabilitation programs, early intervention with
Also used by the DPEP scheme of the Govt.
infants at risk, Andhra Pradesh Association for the
of India, the activities cover conversation, and Welfare of the Mentally Retarded (APACWMR),
creative activities for different levels of retardation. parents self help groups; National Institute for the
NIMH has also brought out video films on Mentally Retarded (NIMH Model), institution-
“Step by Step We Learn Give them a chance”, based extension services, ACTIONAID
“Sahanuhbhuti Nahi Sahyog” for awareness community-based program worked in rural areas.
building from the point of view of early
intervention services, schooling and vocational Deepshikha, Ranchi
training. The films bring a spirit of optimism. Deepshikha, Ranchi through its outdoor
services and extension clinics at Kanke and
Thakur Hari Prasad Institute for Research & Hulhundu is working in the field of early
Rehabilitation of the Mentally Handicapped (THPI), intervention and child care and training.
Hyderabad
The THPI, Hyderabad undertakes early Vijay Human Services, Chennai
interventions and early stimulations involving Vijay Human Services, Chennai has
parents. It has adopted the Portage program and developed a 24-hour time table for every child
Head Start program of the West with the feeling which is being implemented as Individualised
that most of the early stimulations programs Programme Plan (IEP) at the Centre and as
especially Portage relies heavily on home based Individualised Family Services Programme(IFSP)
training. at home.

But experience has shown that at that time it Manovikas Kendra Rehabilitation and Research
becomes difficult for a poor illiterate mother in a Institute for the Handicapped (MRIH), Kolkata
poverty stricken, nuclear family to carry home Working since 1974, it has created public
based training and stimulation programs as both awareness on children with mental retardation,
parents have to struggle for their survival all day their needs and capabilities among pediatricians,
long with very little time or energy to attempt home neurologists, psychiatrists, and doctors in addition

244
to the special educators. Conclusion
Services are provided for families and their Well developed early intervention programs
children with disabilities from birth to six years. are available.
Services are provided for 9 infants in the daily Some service models with a CBR approach
sessions and for 10 children in weekly sessions. have been introduced to disseminate information
The children undergo an early assessment on early intervention programs through village
followed immediately after by Individual Learning level workers. This effort has also helped in
Plan. Emphasis is laid on training in the narrowing the lapse of time between detection and
developmental areas of cognitive, social, language, intervention.
motor and self-help skills. Care and counselling is Indigenously developed home-bound
given to reduce the emotional stress which parents intervention programmes for young children with
undergo. visiting trainees are in use in local village or urban
pre-schools.
Sweekaar Rehabilitation Institute for the
Handicapped, Secunderabad A comprehensive Early Childhood Care and
Sweekaar Rehabilitation Institute for the Education (ECCE) includes the following services
Handicapped, Secunderabad, has a comprehensive in centers for effective functioning:
and pervasive early child care and intervention unit • Family counselling.
assisted by the multi-disciplinary team. • Health/Nursing/Nutrition care.
The Center follows an individualized early • Occupational/physical therapy.
intervention program. A few other well equipped • Psychological, Audiological, Speech/
centres with teaching learning materials, aids and Language Services.
appliances, have been established by Sweekaar at
• Special Education.
several places in the state of Andhra Pradesh.
• Social work.
The Centre at Secunderabad with its well
• Transportation
provided infrastructure, offer programs for over
400 children for early intervention in a day.

245
Chapter 5

Assessment in the Field of Mental Retardation:


Current Practices

Introduction Overall Purpose of Assessment

A ssessment for persons with mental retardation


and associated conditions needs a
multidimensional approach in terms of
The assessment tool should
• be developmental, indicative of both the
strengths and the needs of the assessed
methodology, sensitivity and capacity building of
individuals,
testers with inputs from an interdisciplinary team
of experts. This is necessary for a society which is • be easy, and simple to administer and to
record even by a non-professional;
culturally diverse.
versatile enough to be administered
Assessment of adaptive behavior, which individually and also in groups;
distinguishes a person with mental retardation economical—time-wise and cost-wise,
from others, has become an important component. using materials available in homes or in
Heber (1961) has described adaptive classrooms,
behavior as, “the effectiveness with which the • yield results, a profile of the individual
individual copes with the nature and social that can be easily used for program
demands of his environment”. planning, interpreted to parents; useful
Prior to the development of adaptive for on going assessments; a
behavior scales and intelligence tests, “social communication tool for future use in
incompetence” was the main characteristic which placement and which is comprehensive
was used to determine whether a person was about the individual’s development and
mentally retarded or not (Nihira, 1969). needs.

Assessment Specific Purpose of Assessment


For an appropriate Individualized Program • Initial identification or screening.
Planning, accurate and comprehensive information • Determination of current performance
of the individual is essential. levels, educational needs, evaluation of
teaching programs and strategies (pre-
For this purpose a standard assessment tool
referral intervention).
is necessary. Systematic observations and analysis
of an individual’s skills and deficits identifies the • For decision-making, regarding
individual’s present developmental level and classification and program placement.
provides information about his strengths, abilities • Development of Individual Education
and developmental needs. This forms the basis for Program including goals, objectives and
educational programming. evaluation procedures.

246
Requirements in Programming school assessment, school learning and post-school
An assessment provides answers to the adjustment.
following requirements in programming: The approach, so far, has been psychometric
Step 1: Behavioral assessment is a complete even though adaptive behavior assessment has
statement of the behavioral level or performance formed the basic component in testing for
level of the person. A person’s past behavior and screening, placement and programming for
present level of functioning is looked at to intervention.
determine what he needs to work on now
The Tests
Based on the assessment, a decision on the
Adaptive Behavior Scale (AAMD-Lambert
future program of action is taken on how far the
et al., 1981), Vineland Social Maturity Scale (Doll,
person needs to advance in behavior and in
acquiring daily living skills. 1953) and a few others have been adapted for use
with Indians, but there has been a wide difference
Assessment leads to an individualized in the application of each.
program plan.
In this direction, the Madras Scale
Step 2: It states in general terms a Goal (Jeyachandran P., 1968), Madras Development
statement arising directly from the assessment and Programming System (Jeyachandran P. and Vimala
states the behavioral objective which is a statement of V., 1975; revised 1983) was the first adaptive
the expected behavior in specific terms. The behavior scale to be developed in the country for
objectives stated, which should be observable and implementation of the Individualized Educational
measurable, is followed by the method of teaching Plan (IEP). The reprinted edition (2002) is being
this targeted (new) behavior. used throughout the country.
Step 3: Evaluation of the individualized program
Following this pioneering development of
plan: It is the looking back on the behavioral
the Madras Scale (1968), the following were
objective and asking if the behavior change
evolved at the NIMH, Secunderabad:
observed as stated in the objective was timely. If
not, why not? This step evaluates the individualized • Behavioral Assessment Scale for Indian
program plan and not the person’s entire behavior. Children with Mental Retardation
(Peshwaria and Venkatesan, 1992, Basic-
Note: Evaluation is done to determine the
MR).
effectiveness of the program. But assessment is for
creating a baseline for further programming and • Functional Assessment Tools
intervention. (NASEOM).
• Assessment of the Mentally Retarded
Tools Available in India Individuals of Grouping and Teaching
Persons with mental retardation are assessed (NIMH, 1991).
for intelligence, personality, education, social • Problem Behavior Checklist (Peshwaria,
achievement, special abilities, and aptitudes. 1989).
Primary assessment includes recording of case • Maladaptive Behavior Checklist
history, physical examination of the child, pre- (Peshwaria & Naidu, 1991a).

247
• Problem Behavior Checklist (Arya, dependence-independence continuum.
Peshwaria, Naidu & Venkatesan, 1990). • The MDPS also provides an Adaptive
• The Assessment Scale-Speech and Behavioral Assessment of each child
Language (Subba Rao, 1998). with mental retardation.
• Behavior Disorder Checklist (Mishra, • The MDPS system helps to record
1990). challenging behaviors (problem
• Adaptive Behavior Scale (Indian behavior) which can be taken care of
Revision) (Gunthey & Upadhyaya, through the IEP. A schedule for the
1982). management of challenging behaviors is
also included.
• Educational Assessment of the Persons
with Mental Retardation, based on • The administration procedure involves
functional performance rather on verbal getting information regarding the skills
performance (Jangira, Ahuja, Kaur, & and behaviors that the child can or
Sefia, 1990). cannot do currently.
• School readiness measure development • Information is derived through direct
(Muralidharan, 1975). observation of the child, through parent/
caretakers’ observations and by means of
The Illinois Test of Psycho-Linguistic
testing in simulated situations or through
Abilities in its adapted form, available in our
interviews.
country (Sahoo, 1988), is used for diagnostic and
related language processes. • The child’s performance on each item
is rated from two directions, A or B,
The ERIC (NCERT) has initiated
depending on whether the child does not
determinants to assess the psychometric validity
or does perform the target behavior listed
of Indian tests in various areas which need wider
as an item on the scale.
dissemination
• The data recorded/presented, graphically
Madras Developmental Programming System and/or numerically, at weekly, quarterly,
(MDPS), 1975 and annual intervals, helps the teacher
to set goals and draw behavior profiles
• The scale consists of 360 observable and
measurable items. Grouped under 18 of the assessed individual; it helps in the
functional domains, such as gross motor, evaluation of a child’s progress over a
fine motor, eating, dressing, grooming, period of time.
toileting, receptive and expressive • Once the assessment is completed,
language, social interaction, reading, persons with mental retardation, as per
writing, numbers, time, money, the design, will naturally fall into the
domestic behavior, community educational classifications: pre-primary,
orientation, recreation and leisure time primary, secondary, pre-vocational and
activities, vocational activities. vocational.
• Each domain lists twenty items in the • The reliability and validity of this scale
developmental order, along the has been established.

248
Upanayan Developmental Programming System tested extensively with parents, special educators
(UDPS) for Children with Mental Retardation and other professionals in different parts of the
(Madhuram Narayan Centre for Exceptional country.
Children, Madras), 1987
It is comprehensive, covering the Behavioral Assessment Scale for Indian Children with
management of children with mental retardation Mental Retardation (BASIC-MR)– Peshwaria and
in the age group of 0-2 years and 2-6 years to meet Venkatesan, 1992, (NIMH)
a ‘felt need’ for systematic training. Appropriate to • Though designed to elicit systematic
Indian conditions and suited to the cultural milieu, information on the current level of
the printed program comes equipped with a user behavior in school going children with
manual and a set of activity cards. mental retardation, in age group 3 to 16
(or 18) years, the teacher may find the
Upanayan Early Intervention Developmental
scale useful even for older individuals
Programming System: This System consists of
with severe retardation.
background information form (Case history), the
Upanayan checklist, profiles, evaluation formats – • Relevant for behavioral assessment, the
Graphical and Numerical, an assessment kit, scale, field tested on a select sample, can
activity cards, training materials and a user manual. also be used as a curriculum guide for
program planning and training based on
The check list, covering the five areas of
the individual needs.
development from birth to 2 years, is arranged in
the normal developmental sequence, comprising BASIC MR
a total of 250 skills, 50 from each domain, such as, The scale has been developed in two parts,
motor, self-help, language, cognition and BASIC MR, Part–A and BASIC MR, Part-B.
socialization.
• PART-A consists of 280 items grouped
The activity cards are colored differently for under seven domains— motor, activities
easy identification. The manual gives instructions of daily living (ADL), in motor,
on the use of the checklist and the activity cards language, reading–writing, number,
and a list of materials to be used during assessment. time, domestic, social and pre-
In the Upanayan program, age 2 + to 6 years, vocational.
the check list includes 50 skills in each of the • PART-B consisting of 75 items grouped
selected 12 domains, a total of 600 skills. under 10 domains, that is, violent and
destructive behaviors, temper tantrums,
The domains are: communication, self-care-
misbehavior with others, self-injurious
meal time activities, personal daily activities, social
behavior, repetitive behavior, odd
activities, community use, self direction, health and
behavior, hyperactive behavior,
safety, functional academics–writing, reading,
arithmetic, leisure time and work. rebellious behavior, anti-social behavior,
and fears, helps to assess the current level
The manual includes instructions for use. of problem behavior in the child, along
The checklist and the activity cards a descriptive scale, namely, independent,
containing suggested activities have been field cueing, verbal prompting, physical

249
prompting, totally dependent and not • Teaching goals and objectives set
applicable, each scale awarded a score quarterly (once in three months) and the
of 5 to 0 in that order. progress evaluated at the end of each
• Test administration of any item within quarter, the checklist provides for
any domain can be stopped after five periodic evaluation.
consecutive failures by the child. The • This checklist has a high correlation with
rest of the items should be scored ‘0’. In the Madras Developmental
such cases, maximum scores possible for Programming System.
the child in each of domain is 200.
• The child is rated on each item of Part- The Portage Guide to Early Education
B along a descriptive scale, namely, 0 for Designed in 1975, as a home based
‘Never’, 1 for ‘Occasionally’ and 2 for intervention program for pre-school children aged
‘Frequently’ based on three levels of 0-6 years with developmental disabilities, it
severity and frequency. provides a flexible model for early intervention by
involving parents and families in the education of
Functional Assessment Checklist for Programming–
their child.
NIMH (Narayan, Myredi, Rao & Rajgopal, 1994)
• Each of the seven checklists is addressed Dissemination in India –The Jamaica Adaptation
to different levels of the child’s The Jamaica adapted Portage Guide
functioning, namely, pre-primary, disseminated in 1986, at NIMH, Secunderabad
primary-I, primary-II, secondary pre-
(M.Thorburn), was found culturally loaded.
vocational-I, pre-vocational-II and care
Hence, a programming system, suited to the Indian
group.
cultural milieu, was developed by an
• At each level, selected carefully and interdisciplinary team of experts.
written objectively, excepting care group,
the checklists cover a broad domain of Curriculum Based Assessment Checklist (MRIH),
skills, such as, personal, social, academic, Kolkata, 2000
occupational and recreational. It was developed to help parents and
• When a child achieves 80% success at a professionals make curricular decisions for those
given level, promotion to the next learners for whom a portion of their program must
higher level considered. be devoted to direct instruction in the community
Each item on the checklist is rated living areas.
along a descriptive scale namely, yes (+)
The checklist contains 17 domains for different
means the child performs the item with
levels of mental retardation. These are, Motor, Self-
no help, occasionally cueing (OC),
help Skill (ADL), Language, Cognition, Safety,
verbal prompting (VP), physical
Health, Physical Fitness, Pre-Vocational,
prompting (PP), no (-) meaning one has
Vocational, Reading, Writing, Arithmetic, Money,
to completely support the child in the
Time, Social play, Recreation.
performance of the task.

250
The full scale of the checklist consists of nine • IEP is developed by a team of experts
domains which contain core skills. Eight other skill and parents to provide persons with
areas are grouped into five performance levels (Pre- mental retardation appropriate
Primary, Primary, Secondary, Pre-Vocational and intervention.
Vocational). • The components of IEP are an
assessment profile, target behavior to be
Thakhur Hariprasad Institute (THPI), Hyderabad,
achieved every quarter and the
Diagnostic Record for Persons with Mental
evaluation records maintained.
Retardation
• This was the precursor to the IEP which
This comprises the following:
emerged in the current format in 1975
• Social work related information, medical and a revised version in 1977.
history which includes pre-natal, peri-
• The IEP format, gazetted in the
natal, post-natal information.
Government of Tamil Nadu Special
• Special Education Assessment is Educators’ curriculum, was put to use.
conducted using the list of activities as
in 1983. Rehabilitation Council of India Recommended Tools
• AAMR definition from gross motor The Rehabilitation Council of India (RCI)
functions to vocational skills. recommended tools for IEP and IFSP.
• Psychological Assessment, Cognitive The popular and most used programming
Vocational Abilities, Behavior Problems, systems in the country are:
Speech and Language Assessment,
Speech Communication-verbal and • The Madras Developmental
non-verbal, Gessel Drawing Test, Seguin Programming System (Vijay Human
Form Board, Colored Progressive Services).
Matrices, Standard Progressive Matrices, • Upanayan Early Intervention
Binet-Kamath Scale, Vineland Social Developmental Programming System
Maturity Scale, Malin’s Intelligence (Madhuram Narayan Centre for
Scale for Indian Children, Bhatia IQ Exceptional Children).
Test, Koh’s Block Design, Denver
• Functional check list (National Institute
Developmental Screening Test.
for the Mentally Handicapped).
An interdisciplinary team of experts give their
These tools are adequate, complete,
inputs using their own assessment system.
individualistic, and inter-disciplinary in their
Individualized Educational Plan (IEP) approach.

• The main purpose of IEP, evolved and


Individualized Education Plan (IEP)–Flow Chart
implemented in the Madras Project
(1968, Balavihar), is to provide age The IEP a sequential process for making
appropriate and need-based education decisions regarding the program of management
and training to every child with mental of persons with mental retardation, is essentially
retardation. an assessment process for teaching, popularly

251
known as criterion referenced scale. With an in- MDPS Behavioral Scale
built system for periodic assessments and In the MDPS Behavioral Scale, the
evaluations, it helps the planners to arrive at a behavioral assessment instrument is designed to
comprehensive picture of an individual’s provide objective and sound information about the
performance level in adaptive behavior, an area functional skills of the assessee for purposes of
often neglected in the traditional method of program planning.
“treatment planning”. Assessment data are presented in a graphic
The entire process of program planning can form on the Behavioral Profile for use by the
be visualized in the flow chart (Bock and interdisciplinary team.
Jeyachandran, 1975) shown in Graphs 1 & 2. Formats: The priority goals and objectives set
by the team based on individualized assessment are
Assessment, the first and a necessary step in
recorded on the Individualized Program Plan
the entire system, is followed by designing the
forms, that is, the Priority Goal Statement Form
individualized program plan which includes setting
and the Quarterly Program Plan Forms.
goals and objectives.
Record of Progress: The quarterly progress can
After quarterly evaluation, new goals and be recorded, both numerically and graphically, in
objectives are set as needed, the entire process to the profile format in which the individual’s
be repeated annually. achievement is shown for each quarter with distinct
markings on the selected objectives. This facilitates
The Interdisciplinary Team a comparison between the initial assessment and
Since many persons with mental retardation the quarterly evaluations.
also have associated problems, the expertise of In the Individualized Program Plan form
several professionals is necessary to provide (Quarterly Program Plan Form) weekly progress
effective programs using the skills of the may be recorded.
interdisciplinary team. The special educator plays
When completed, the tabular form will give
a pivotal role.
a clear, consolidated picture of the progress made
The most commonly involved members by the individual in regard to the objectives selected
being the special educator, psychologist, for the quarter.
physiotherapist, occupational therapist, speech On the Problem Behavior Assessment Form, a
therapist, social worker and paediatrician. The team description of the problem behavior can be
also includes the trainee, his parents and the referral recorded. A few of the frequently observed
agency, all participating in the program planning problem behaviors is also given.
activities.
In summary, the component parts of the IEP
Though each member of the team has a include:
clearly defined function, all of them work together.
• The Behavioral Scale –an assessment tool.
Program planning is a good practice, • The Behavioral Profile with space to
irrespective of the “tools” or “instruments” record the quarterly progress and the
employed. identifying information.

252
Graph 1: Individualised Education Program (IEP)

Annual
BEHAVIOURAL
SCALES INTER-
DISCIPLINARY
TEAM

As needed

BEHAVIOURAL SETTING GOALS EVALUATION


ASSESSMENT AND OBJECTIVES

Individualized
Program Plan

253
Form QUARTERLY
PROGRAM
PROGRESS
Behavioural REPORT
Profile

Where represents milestone events, represents “tools” or “instruments” to complete each event and

represents the people responsible for implementing the process.


• The Individualized Program Plan Forms which uses the materials available in the classroom
include the Priority Goal Statement and at home, can be used wherever simulation is
Form, the Quarterly Program Form and necessary for assessing an individual.
the Problem Behavior Assessment Form.
The material in the kit is established to get a
Adaptive Behavior Assessment Kit (ABAK) valid and reliable profile of the individual (Vimala,
Kumar, Jeyachandran, 1983).
Adaptive Behavior Assessment Kit (ABAK)

Graph 2: Program Planning

Road map for program planning


STARTING POINT DESTINATION

ACTION

The diagram below illustrates the steps involved in program planning

BEHAVIOURAL EVALUATION
ASSESSMENT

INDIVIDUALIZED
PROGRAM PLAN

Steps in Individualized Program Planning

Step I Assessment Step II Individualized Program Step III Evaluation

IA IB IIA IIB IIIA IIIB

What are the What is the What are the What are the What are the Has the child
skills that are present level goals you would specific specific methods achieved the
already learnt of functioning like the child to behavioral to be followed to activities set
in adaptive reach? objectives that help the child? for him?
behavior? the child must
achieve in order
to reach the
overall goals set
for him?

254
Behavioral Assessment

Individualized Program Planning (Overall Process)

Behavioral Assessment Goal Behavioral Objective Evaluation


of the Domain, Dressing

Puts on and removes clothes, does To dress himself When required to undress, the After three months,
not button or unbutton, does not independently child will unbutton his shirt teacher and parents will
hold button with thumb and index 8/10 times within a period of observe the child’s
finger. three months dressing to determine
the degree to which
this objective has been
achieved.

As seen above, the goals and behavioral primary aim is to develop his activities of daily
objectives are set, based on the assessment. Every living wherein inappropriate behavior modification
skill is task-analyzed into small sequential steps. becomes simple.
All these steps in ‘Task Analysis’ are translated into
concrete lesson plans. Individualized Program Planning in a Classroom
Setting (Group Teaching)
Problem Behavior Assessment The individualized program plan can be
Persons with mental retardation show effectively carried out in a classroom set-up for five
deficits in adaptive behavior. Hence, training them or six persons as a group in a class room set up by
to overcome the limitations in adaptive behavior a special teacher.
is the primary aim of any individual working with
persons with mental retardation. A few of them Grouping
also have problem behavioral posing challenges to Grouping the persons with mental
the educator. retardation homogenously for purposes of
education/training could be based on the
Problem Behavior – Its Identification assessment made on the standard scale.
A problem or a challenging behavior in the The groups are as follows:
individual interferes with his acquiring new skills, Pre-Primary, Primary, Secondary and
or strengthening old skills or it interferes in Pre-Vocational
someone else’s activities. The behavior may be
• The grouping need not necessarily be a
harmful to himself or may causes harm or
heterogenous one either. The educator
disrespect to others.
needs to work on the selected skills
relevant to the group in which the
Behavior Modification
individual is placed.
Once the problem behavior is identified,
• The grouping can be shown in the
steps should be taken for its elimination/
Behavioral Scale and in the Behavioral
modification. However, the educators should
Profile Form. When the assessed
remember that in a developing person, their
individual achieves independent

255
performance (80% level) level, he is Children of the same age group, but with
ready to be moved to the next higher different performance levels within the same goal
level for training. areas, may be grouped together for a learning
• However, there cannot be rigidity in activity. They will learn the different selected skills
grouping. Allowances must be made for in the respective domains, based on the current
minor variations. For example, an levels of performance of each individual.
individual may not progress in However, the goal areas may also be different,
functional academics, such as, reading, especially after the first quarter; the priorities may
writing despite training for more than
vary depending on individual achievements and
two years, but learns other skills. In such
requirements.
instances, he can still be moved to the
next level by making allowances to his Grouping children based on the range of
non-achievement in functional activities in which they need to be trained will
academics. enhance effective implementation of the
This will help the teacher to give age- Individualized Educational Program System in a
appropriate training. classroom.

Similar situations may also occur where the The time allotted for the goal areas selected
individual may have motor or other associated for each individual, the objectives selected for each
disabilities. of the goal areas based on the Individualized
Program Plan and the intervention strategies
Economy decided upon are displayed in the time table.
It takes an average of 55 minutes only to
complete an assessment on the individual if both
Assessment in Special Education
the parent and the teacher are knowledgeable of In an All India Seminar on Assessment in
the items in the scale and also have clear Special Education - MR (MRIH - USEFI, 2001)
information on the child’s behavior (activities). recommendation for a Multidimensional Model
of Assessment was made with a series of operational
A well planned time table is essential for the
recommendations. This has been implemented.
success of the individualized program plan in a
group set up. Multidimensional assessment refers to a
comprehensive and integrated evaluative approach
Time Table that employs multiple measures, deriving data from
After assessment, depending on the child’s multiple sources, surveying multiple domains and
age, level and associated conditions, the goals fulfilling multiple purposes.
(5-10 in number), are set for each child in the class.
Use of multi-measures provides a broader base
The activities in the first three goals to be achieved
and a more valid method for assessing children
should be repeated twice a day, in a special
education set up and the others, once a day. with developmental disabilities.

Provision should be made in the day’s time Diagnostic batteries that combine norm
table for music, games and craft work. based, curriculum based and clinical judgment

256
based scales, help achieve the greatest probability • Learning potential assessment device
of accurately describing and prescribing the (LPAD) in content areas, in the pattern
complex needs of children with multiple of achievement tests for different levels/
disabilities. classes, is to be developed.
Information from Multi source, i.e., from • Development of clinical diagnosis
several contexts (home, school, clinic) and sources schedule and procedure involving
(parents, teachers, therapists) is gathered. This National Institutes and other leading
requires interdisciplinary, ecological, interactional Non-Governmental Organizations.
and environmental assessment. • Adoption of information schedule for
family data and ecological conditions.
Multi domain assessment refers to the use of
instruments that examine the child’s capabilities • Evolving guidelines for drawing profiles
and deficiencies within and across several in terms of developmental milestones
developmental and behavioral areas or processes. and points of intervention.
• Evolving an outline of an assessment
In multi purpose assessment, besides cognition,
report–what and how it can be
domains like social competence, communication,
meaningful to parents/special educators.
self-care, play, temperament, self-regulation,
attention, emotional expression and coping Conclusion
behavior, are included.
Many persons with mental retardation also
have associated problems. The services to these
Suggestions Made by USEFI Seminar for
individuals must be rendered using the professional
Development of Assessment Tool for
skills of the interdisciplinary team whose members
Identifying, Classifying Persons with
may also be made available on a consultative basis.
Mental Retardation
• Using a process oriented assessment tool The team should be involved in identifying
(planning, attention, simultaneous, the individual’s needs and in designing programs
successive processing) Das et. al. (2000) to meet them. The individual, his family and the
instead of IQ Test (MR, L.D., Reading referral agency also form part of the
Disability). interdisciplinary team. Each member of the team
should utilize the skills, competencies and insights
• Clinical psychologists working in
that his/her training and experience provides, but
organizations of disability training
they should work together as a team without
research/NTs to take up adaptive
imposing constraints. The special educator plays a
behavior scales suitable to our culture
pivotal role in the interdisciplinary team.
and life (translate to regional language)
and validate the schedule. The members of the team should always
• Adoption of completely uniform work together with the child as the main focus.
procedure of testing, laying down tester
characteristics for all institutions,
including ethical considerations.

257
Chapter 6

Array of Services for Persons with


Mental Retardation - Quality Services

Introduction

W ith the implementation of Persons with


Disabilities Act, 1995, an array of services
for persons with mental retardation is now available
However, there is a need for rules and
regulations in the provision of standardized services
and accountability.
in the country.
An outline on the available of services is given
Efforts towards a process of normalization, below.
integration, and inclusion have already shown
results in the right direction.
Array of Services–Prenatal Care
Array of Services Organizations Service Providers Remarks

PRENATAL • Genetic
1. Prevention Observations:
• Genetic District Rehabilitation Centres, Medical Professionals i. Facility available only
Counseling Hospitals, Primary Health Researchers, Village in the metropolitan
Centres, Voluntary Care Level Rehabilitation cities.
Services. Workers, Nurses, Dayis, ii. Not easily affordable
Genetic Counsellors, iii. Need for improved
Volunteers. awareness on its
importance in
prevention.

Action Plan:

i. Concerted effort in
creating awareness
on the need for
genetic counseling and
on how to seek the
services for counseling
and diagnosis.

ii. Services at the district


level to be set up, for
basic needs with a tie
up with hospitals
where diagnostic
services are available.

258
Array of Services Organizations Service Providers Remarks

Prenatal care • Prenatal Care


including Malnutrition –
Nutrition and Early in pregnant
Detection mothers/ weaning
child
Of the possible 100
million pre-school
children, 3 to 4
million suffer from
severe forms of
malnutrition. Nearly
1 million die of
starvation every year.
(The Feeding and Care
of Infants and Young
Children,
Dr. Shanthi Ghosh,
VHAI, 1992).
Early detection and
correction of
malnutrition not
available for all.

INFANCY AND PRE-SCHOOL


Medical Observations:
1 (a). Prevention District Hospitals, Government Pediatricians, Physicians, Inaccessibility /
(Medical) Hospitals, Research Institutes, Gynaecologists/Obstetricians unaffordability to avail
• Health check ups, Primary Health Centres, Nutritionists, Pathologists, facilities in ante-natal
investigations; Well Baby Clinics. Other Medical Professionals clinics.
Genetic Disorders, (relating to mother-child i. Lackadaisical
Chromosomal health), Researchers – attitudes of some
Anomalies, Scientists; Health Care medical personnel.
Metabolic workers, Nurses, Lab ii. Improved
Disorders; technicians, Counsellors. awareness on the
Screening- need for periodic
Nutritional checkups.
deficiencies in diet
Timely immunization Action Plan:
Counseling on avoiding i. Sensitising medical/
toxic substances. para medical
Follow up on professionals on the
“ high risk” neonates. nature, causes and
Tracking “high risk” management of
mothers. disabilities through
Routine medical care. periodic workshops

259
Array of Services Organizations Service Providers Remarks

updating them with


scientific information.
ii. APGAR Score to be
taken for every new
born and reported
to parent; awareness on
the need for corrective/
preventive action.
Early detection
facilities to be made
available with a tie
up with genetic
research labs and
networking with
them - genetic
metabolic disorders/
chromosomal
anomalies.
Media dissemination
of information on types
and causes of
disabilities.
Message on:
iii. Prevention, every
day at prime
time.
All hospitals to
compulsorily introduce a
screening system for
‘high risk” mothers and
children.
1 (b). Prevention Observations:
(Psychological) Improved awareness in
• Early detection for Early Intervention Centres, Parents/foster/adoptive/ parents and the general
defects, Child Care Agencies/Creches, surrogate Special Educators public that
impairments, Social Service Units; Child Care Teachers/Aids Social disabilities detected
disabilities. Centres in Hospitals; Balwadis, Workers, Anganwadi early can become
• Early Intervention Primary Health Care Centres; Workers, Volunteers. manageable with surgery/
(Infant Stimulation) Homes. medical treatment/ and with
for developmental timely intervention.
delays and pre-
vention of secondary
disabilities.

260
Array of Services Organizations Service Providers Remarks

Action Plan:
i. Dissemination of
information
through posters
pamphlets/
workshops at all
centers/ PHCs/
Agencies.
ii. Establish early
intervention units
at all the locations
mentioned above,
for training.
iii. More awareness
needed.
iv. Rural –ignorance:
urban- societal/
professional
unsupportive
attitudes
2. Early Identification
(i) Screening Health Centres, Creches, Public Health Workers, Observations:
(ii) Early Diagnosis Well-baby Clinics, Child Nurses, Pediatricians, i. Inter disciplinary
(iii) Parent counseling Couselling Units, Health Psychologists, Social team approach
(iv) Intervention, Departments, District Workers, Physicians, available.
Training / Hospitals, Service Providing Therapists (Physio, ii. Each department
Treatment Centres. Occupational, Speech), works
Anganwadi Workers, independently, in
Creche, Care Workers. isolation, not
holistically.
Action plan:
i. Need for an inter /
multi disciplinary
team approach/action.
ii. Field workers to
undergo periodic
refresher courses
to update on relevant,
scientific information
iii. Awareness on and need
for timely and
corrective surgery to be
created.
• Medical-Medication
Surgery Hospitals, Special Diagnostic Medical Specialists, Facilities to be made
Clinics, Early Intervention Practitioners - Pediatricians, available. Funding for
Centres, Child Guidance Clinics Neurologist, Psychiatrists, those who cannot
Surgeons and other specialists afford.

261
Array of Services Organizations Service Providers Remarks

• Therapies-Physio, Public Health Centres, Infant Therapists: Psychologists, Observations:


Occupational, Stimulation/Early Intervention Physio, Occupational, Speech, Therapists working at
Speech: where Centres/Homes, Child Special Educators, Teacher tandem with special
needed. Development Centres Aides, Social Workers, Parents, educators.
• Sensory Stimulation, Creche Care Givers, Nursery Action Plan:
Training and Special School Teachers, Psychologist i. Need for
Education in Motor Physiotherapist Occupational coordination in
(Gross and Fine), Therapist, Speech Therapist, services.
Language and Social Workers. ii. Need for
Cognitive introducing
Development, mainstream
Self-Help (feeding, teachers to the area
dressing, toileting, of disability and the
grooming) and services needed in
Social Interaction. them.
• Corrective: Aids and
Appliances, as and
when needed

Residential NGOs Care Givers Homes, Parent, Foster Parent Group, Observations:
Community Homes, Small Home Parent Need for homes for the
Group Homes, Respite orphans and destitutes,
Care/Medical Support Clinics; multiple handicapped
Primary Health Centres children.
Action Plan:
Need for accreditation
for such homes and a
need for follow up for
improvements and
maintenance of the
required standards with
sufficient funds.
• Parental-Child Village Health Workers, District Parent Trainers, Social Observations:
Development Rehabilitation Centres, Social Workers Awareness present.
Emotional Service Agencies, Parent Action Plan:
support/respite Associations Networking of Services
care/parent and formation of
organisations, Federation of service
social services. providers.
• Coordination and Psychologist, Special Educators, Legal Aids, Social Workers, Observations:
advocacy Advocates, Parents Associations, Volunteers, Lawyers. Inaccessibility to
• Coordination of Voluntary Agencies, Social professional services
inter-disciplinary Service Organisations. due to lack of
services as needed. awareness on the need
Helping parents to and availability/
become “advocates” financial affordability.
for their children
The above mentioned Array of Services is preparatory to the school stage entry and beyond.

262
Array of Services Organizations Service Providers Remarks

School Age
SCHOOL AGE
Training and Schools, Specials, Inclusive Special Educators, Special Observations:
Education as in Education Schools, Vocational teacher helpers, psychologists, i. Insufficient
pre-school, plus Rehabilitation Centres, Special counselors, rehabilitation availability of
• academics. Therapies Centres, Home bound counselors, sex educators, number of trained
• prevocational and programmes, Health Depts, physio, occupation and speech professionals.
vocational training. Yoga/Music/Dance Centres, therapists, yoga therapist, ii. Need for
• sex and family life Resource rooms in schools. dance and music teachers. standardization in
education. Resource teachers and quality.
• acquisition of skills in Itinerant teachers. iii. Lack of “sufficient”
activities of daily awareness on
living. “inclusion”.
• yoga. iv. Poor infrastructural
• music. resources.
• dance/movements. Action Plan:
• art crafts. Coordination in
• other therapies. pooling/sharing
resources with
Ministries of HRD,
Social Justice and
Empowerment, &
Health.
• Residential
As in pre-school and As in pre-school years plus As in pre-school years plus Observations:
in addition programs facilities for those with behaviour management Non-availability of
for persons of different behavioural problems. specialists. sufficient number of
categories and age trained /committed
levels. professionals ready to
work in the field.
Action Plan:
i. Forming a resource
pool of available
personnel,
registered with RCI.
ii. Introducing
training courses in
management of
residential
homes.
iii. Standardisation and
accreditation.
• Recreational Community Parks/ Centres, Recreation Planner Groups, Observations:
Recreational Programmes, Social Workers and Volunteers i. More need for
Special Recreation Centres barrier free,
and Special Olympics. safe environment

263
Array of Services Organizations Service Providers Remarks

ii. Volunteers available


only in few places.
Action Plan:
i. Awareness
campaigns that
persons with
disabilities also
need recreational
facilities.
ii. Providing more
recreational
facilities
Coordination and
advocacy Observations:
• As in pre-school years As in pre-school years As in pre-school year. The PWD Act yet to be
but with special implemented in its
emphasis on the reality.
assurance of education Action Plan:
as a fundamental right Implementation of the
be provided by the PWD Act, RCI Act and
schools. the National Trust Act
in letter and spirit.
ADULTHOOD
Vocational Skilled, Semi-skilled and Employers, Personnel Observations:
Pre-vocational unskilled on the job training Manager, Rehabilitation i. Very few training
• Vocational on the job units, workshops, factories, Counsellor, Supervisors in courses and
training, competitive industry locations, offices, sheltered workshops facilities for
employment, sheltered workshops, vocational (Administrators/Work employment.
sheltered employment. rehabilitation centres, farms, evaluators, supervisors and ii. Public awareness
animal husbandary units, instructors). and the confidence
cottage industrial units at a low level in
the employer to
recruit persons
with disability even
with training.
Action Plan:
i. Awareness program
on the need for
acceptance of
persons with
disabilities at the
workplace.
ii. Implementation of
the reservation
policy to include
jobs/identify
suitable jobs for
persons with
mental retardation.

264
Array of Services Organizations Service Providers Remarks

Day “activity” program Day “Activity” Centre Special Educator, Teacher Observations:
• Primarily for severely Aides, Nurses. Very few facilities
and profoundly adults available.
with mental Action Plan:
retardation and Need for community
providing continued participative projects.
training in basic self
care skills and
activities of daily
living, recreation
pre-vocational activities.
Educational Schools of Social Work Special Educators, Social
Workers, Parents,
Volunteers.

• Courses on money Care givers, counselors, As in earlier years: plus


management. Supervised and supported board health workers.
• Human Relations & lodging placements,
• Music Apartments, Subsidized family
• Appreciations living placement, Minimum
• Health Care supervision group homes,
• Sexuality Intensive training group homes,
• Cooking Health care facilities,
• Outdoor recreation facilities for persons with
• Residential chronic medical problems
• From semi-
independent living to
specialized residential
facility for profoundly
retarded

“Support” Service Respite Resources, Personal care “Respite” care givers, personal
Home and chore services. care attendants, village level
workers, health workers,
noon meal servers, school
teachers.
Health Medical and Dental Medical Professional
Transportation Subsidised Public transport
system.
Social and Recreational Organisations and As in early years
Community Recreation
Resources
Advocacy Advocacy Agency As in earlier years, plus,
parent groups.
Coordination RRTC, DRC, DRD, Case As in earlier years.
Management agencies-
Voluntary
Note: Research should be conducted at all stages of education and effective dissemination done.

265
Number of Special Schools Working in the Country for Persons with Mental Retardation (State-wise) as on 30th April 2007(NIMH)

Name of the State No. of Name of the State No. of


Schools Schools
Andaman & Nicobar Islands 18 Manipur 4
Andhra Pradesh 248 Meghalaya 4
Assam 12 Mizoram 3
Bihar 33 New Delhi 61
Chandigarh 6 Orissa 56
Goa 12 Pondicherry 24
Gujarat 112 Punjab 12
Haryana 24 Rajasthan 27
Himachal Pradesh 10 Tamilnadu 258
Karnataka 110 Tripura 4
Kerala 162 Uttar Pradesh 54
Madhya Pradesh 48 West Bengal 69
Maharashtra 178 TOTAL 1579
Note: Includes Special Schools run by Parents’ Associations and Integrated Education for the Disabled Children
(IEDC) Programs in some states.

The figures given above indicate only those schools which responded to the National Institute for the Mentally
Handicapped (NIMH) Survey. Schools under the Sarva Siksha Abhiyan (SSA) inclusive program are not
included.

Conclusion
Over the past two decades, the parents and the need for services for their wards with mental
caregivers have become more and more aware of retardation. Trained professionals have also become
more available now.

266
Chapter 7

Manpower Development and


Special Teachers Training

Introduction As per the RCI Act, Section 11, it is a


mandatory requirement for all universities and
Manpower Development Programs institutions intending to offer training courses in

P rograms in manpower development which are


being implemented are: long duration courses,
short term programs, and workshop/orientation
the field of disability rehabilitation to seek RCI
recognition before the commencement of the
course.
programs, orienting to professionals in awareness
So far, 125 institutions have been granted
of the needs of persons with disabilities of different
recognition by RCI to run courses in special
personnel.
education for the persons with mental retardation.
In 1992, the manpower development and
The Manpower Report (1996) prepared by
training programs were brought under the purview
RCI had projected that about 0.36 million persons
of the Rehabilitation Council of India, a statutory
would have to be trained during the Ninth Plan
body.
period.

A Comparison in the Status of Disability in the Years 1947 and 2007


S. Status Disability 1947 2007
No.
1. Number of service providing organizations 3 2010
for the intellectually disabled
2. Early Intervention Programs–Centers None 198
3. Special Educators’ Training Programs : None 70 (Including
• Early Childhood Special Education University
• School Education Programs)
• Adult Programs
• CBR Programs
4. Therapists’ Training Programs
• Speech Therapy None 25
• Occupational Therapy None 30
• Physiotherapy Only in the city hospitals 400
for post surgery therapy (including
rehabilitation)

(Continued)

267
S. Status Disability 1947 2007
No.
5. Services Available
Early Intervention
• Home Based None Available all over the
• Centre Based country
• School Education None Well structured need
Special Schools based residential
Integrated Schools homes
Inclusive Schools
Transition Vocational 4 (Juvenile Detention
• Day Activity Centers Homes)
• Residential Homes
6. Legislation Governed by British Mental Health Act,
Lunacy Act, 1910 1987; Rehabilitation
Council of India Act,
1992; Persons with
Disabilities Act,
1995; National Trust
Act, 1999

Training Programs structured, systematic and simple in application for


In 1993, when RCI Act came into effect, the home based, centre based early intervention, for
number of training courses and institutes stood at programs in special schools, integrated, inclusive
22 and 25 respectively. RCI recognized institutions, settings, transit schools, vocational activity centres,
17 years later, for offering courses at Certificate, community based programs and residential
Diploma, Bachelor, Masters, M.Phil, etc., number programs.
350.
Rehabilitation Council of India
Out of 120 short and long term courses
developed so far, 56 courses of 1 year duration or RCI—Categories of Professionals
more, are operational in the country, turning out, Under the Act, sixteen categories of
annually, more than 5,000 rehabilitation professionals dealing with various disability areas
professionals in conventional classroom setting and come under the purview of the RCI for
B.Ed. in special education in the distance mode. development and standardization of their training
Some of these trained professionals are in demand curricula, development of training norms and
in the developed world also. guidelines, regulation and monitoring of training
Training institutions for the special educators institutions conducting these training programs.
rose from nil to 70. Training has made possible the Also coming under the purview of RCI is
inclusion of trained experts in speech, vocational registration of trained professionals and promotion
training and physiotherapists as members of the of research in related fields.
interdisciplinary team in drawing up individualized In the area of mental retardation, training
program plans. The modes of training are programs for teachers rehabilitation professionals

268
recognized by the RCI and conducted by the National Programs on Orientation
national institutions, universities, NGOs, etc. are: RCI also launched a National Program on
Diploma Courses in Special Education (Mental Orientation of Medical Officers working in
Retardation) and D.S.E. (M.R.), B.Ed., and M.Ed. Primary Health Centres to Disability Management.
in Special Education, and Bachelor’s degree in Fully funded by RCI, it was planned to train about
Mental Retardation, Bachelor ’s degree in 18,000 Medical Officers through selected agencies
Rehabilitation services. located all over the country.

Courses/Programs Developed by RCI Continuing Rehabilitation Education Program


Forty Five Days Foundation Course on Disability RCI requires that the registered professionals
RCI has developed a 45-day training undergo CRE programs, for a total period of 16
program, a foundation course, which includes five days within a span of five years from the time of
areas of disability: mental retardation, hearing registration.
impairment, visual impairment, learning
Manpower Required
disabilities and locomotor impairment, with the
intention of giving knowledge, skills, attitudes and RCI has developed a schedule for manpower
instructional teaching techniques to the teachers development for the type of professionals who
of primary schools in the District Primary Education would work in the field of disability and in
Program (DPEP) to handle the disabled children particular in the area of mental retardation with an
in the regular schools. estimate (projected) which has been presented in
Table 7.1 in the previous volume, Disability Status
The Bridge Course India, 2003.
The RCI Act stipulates that all those In view of the fact that the estimates prepared
delivering services to persons with disability must earlier for the five-year plan periods was not based
possess RCI recognized qualification and also be on any empirical study, RCI has hired the services
registered with it. Failure would result in of the Institute of Applied Manpower Research,
prosecution. The scheme (covering the five areas
New Delhi, a professional institute under the
of disability and mental retardation, cerebral palsy,
Planning Commission specialized in undertaking
learning disability, autism and attention disorders)
such studies to develop a methodology to arrive at
for offering a Bridge Course was devised as a means
more realistic estimates based on scientific
to overcome this problem, a one-time measure
principles.
designed to assist the professionals working prior
to 1993 in the field of rehabilitation, but did not
Manpower in the Field of Mental Retardation
have qualification recognized by RCI nor registered
There is a wide gap between the need and
with it earlier.
the supply of professionals, between the
The Bridge Course launched by RCI projected figures (2003) and the number of
throughout the country, 21 centers were recognized professionals actually working in the field of
to run the program for persons with mental mental retardation.
retardation.

269
Number of Professionals Actually Working in the P.G. Diploma in Special Education (MR)
Field of Mental Retardation [PGDSE (MR)] 1
B.Ed. (Special Education) – Mental Retardation 1
The information is provided in a tabular
M.Ed. (Special Education) MR – 1
form in the section on Mental Retardation in the
previous volume, Disability Status India, 2003. Though there are six types of courses
operational at 79 institutions in the field of Mental
Other Efforts in Promoting HRD Retardation, other courses like M.Phil & Certificate
Programs in the Country courses in Clinical Psychology, M.Phil & PG
Diploma courses in Rehabilitation Psychology,
NCERT–Initiative in Special Education Teacher
Diploma courses in CBR & MRW, Bachelor &
Preparation
Diploma courses in Rehabilitation Therapy,
In 1983, the National Council of Educational PGDDRM, and PG Diploma in Early Intervention
Research & Training (NCERT) included education give sufficient coverage to mental retardation in
of children with special needs as an area of service addition to other disabilities.
under its teacher education program. The first
National Workshop on Special Education was Non-Governmental Organizations
organized by NCERT in March 1983.
Non-Governmental Organizations con-
UGC–Scheme for Special Education Teacher tribute significantly to human resource
Preparation development without any substantial funding from
the Government. An outstanding example is the
In 1985, the UGC encouraged university
Thakur Hari Prasad Institute of Research &
departments and colleges of education in the
Rehabilitation for the Mentally Handicapped
country to start teacher preparation programs to
established in 1968.
educate children with special needs for which 100
per cent financial assistance was provided. The Manpower Development in Teacher-
UGC has introduced TEPSE (Teacher Preparation Training Programs in Mental Retardation
in Special Education) scheme wherein assistance
is given to Universities and Colleges of Education NIMH and its Regional Centres
to start B.Ed. or M.Ed. Special Education programs The NIMH and its regional centres conduct
to prepare special teachers. refresher courses, training workshops and
Present Status of HRD in the field of Mental Retardation RCI continuing education programs for the
Recognized Training Institutes / Universities & Training professionals apart from full time courses at various
Programs Courses Specific to the Area of Mental Retardation. levels.
Course Duration
(years) Parent Training Programs
Diploma in Special Education NIMH had initiated and conducted training
(Mental Retardation) [DSE (MR)] 2
programs for groups of parents. The intention in
Diploma in Vocational Rehabilitation this model is to empower the parents and family
(Mental Retardation) [DVR (MR)] 1
members to look after their children with mental
Diploma in Early Childhood Special Education retardation as against providing expensive
(MR) [DECSE (MR)] 1
institutional support or residential programs.

270
This unique program initiated by NIMH is Extension Programs for Professionals and
being followed by many NGOs. Growth of Functionaries Including
Parents
Distance Education Both the government and the voluntary
B.Ed. (SE-DE) Special Education Distance Mode organisations are involved in the extension services
Programme of training the trainers of children with severe
disabilities. Crash orientation seminars and
Madhya Pradesh Bhoj (Open) University, Bhopal workshops are organized for teachers of general
Under an agreement with the RCI, the schools on different aspects of special education.
Madhya Pradesh Bhoj (Open) University has The NIMH, Secunderabad and its regional
launched B.Ed. (Special Education) through centres, the SNDT Women’s University, and
distance mode for training special teachers. MIND’S College of Education, leading NGOs
Those candidates with a Bachelor’s degree such as THPI, Amarjyoti, MRIH, CHETNA,
from any recognized university having two years’ Deepshika, are running a number of programs.
experience in any disability area in a standard These demonstrate the coverage, and
institution are eligible to apply, preference being continuous awareness and professional
given to persons with any disability. development through exchange, participation,
deliberation contributing to the holistic
Indira Gandhi National Open University development and rehabilitation of persons with
(IGNOU) mental retardation. These programs planned year-
As per MoU signed by RCI with the Indira wise, are of very short duration.
Gandhi National Open University (IGNOU), a
number of courses have been launched through Conclusion
distance mode. Future perspectives in the HRD programs
The Distance Education Course have been in the rehabilitation of persons with mental
taken up by the States of West Bengal, Gujarat, retardation.
Maharashtra, U.P. and Tamil Nadu. In a span of sixty years, India has increased
its manpower resource by more than 100 times.
The Ministry of HRD, Government of
India Apart from teacher training, parents’ training
program, sensitization programs for Panchayat,
The Ministry of HRD, Government of
Block and District level functionaries need to be
India in its efforts to incorporate special education
taken on mass scale with the support of different
in the curriculum of regular school teacher training
Ministries.
program, is modifying both pre-service and in-
service training programs to incorporate special To enhance human resource development
education component into the curriculum. Many studies on need assessment for identifying number
pre-school teacher-training programs have also and types of rehabilitation personnel required, their
included “Education of exceptional children” in placement, role, job analysis, determination of
their curriculum. minimum salary, etc., must precede the launching

271
of new training courses. Information elicited would To improve the training programs
determine the curriculum, its duration, course qualitatively, infrastructure in the training
content, etc., to prevent wastage of time and effort. institutions must be augmented.
Impact and research studies need to be Refresher and orientation programs need to
conducted to gauge the usefulness of ongoing be made compulsory for the in-service and
programs by involving stake holders such as clients, practicing rehabilitation professionals.
family members, employers, professionals, and
faculty members.
Studies conducted on comparative analysis
of training programs available in India and
developed countries will help adoption of relevant
content areas suitable to local needs.

272
Chapter 8

Teaching Process and Materials for


Children with Mental Retardation

Introduction wholehearted and purposeful activity, carried on

O ver the past two to three decades in India in a social environment. A significant landmark in
and overseas, there has been a shift in the the history of methodology of education, Dewey’s
teaching process. With the individualized program method implies the principles and fulfills the
plans tailor-made, the child with mental retardation conditions of a good learning process. Kil Patrick
has become an active learner. has enunciated this method.

This programming system fixes the onus on Play-way–Active Participation Method–Caldwell–


the teacher: “If the child did not learn, where has Cook
my lesson plan failed?”
Cook, the first person to advocate “way of
play” for educating the child. Regarded play as a
Effective Methods
means of training individuals as individuals, a
A few effective teaching methods are wonderful technique of making school education
described briefly. interesting and practical.

The Montessori Method Teaching Persons with Mental


Maria Montessori’s multisensory approach Retardation Using Behavioral Approach
came to stay, initially in Chennai and later, all over Teacher-centered process giving way to a
India. The scope of teaching children with mental child-centred one, has influenced the area of special
retardation was later enlarged to include normal education with emphasis on the Individualized
children. Education Program (IEP) planning for children
with mental retardation. Along with individualized
In following the multisensory approach,
instruction, the teaching strategies introduced are
besides hearing and vision, other sensory modalities
cooperative learning, peer tutoring, computer-
are also utilized, the tactile sense being depended
aided learning (CAL), multi-sensory teaching and
on much, with focus on children in the pre-school
clinical-diagnostic teaching.
and school stages.
Discrimination among weights, colours, Procedures–IPP
sounds, and so on was reinforced to aid in The individualized program plan (IPP) is
exercising the children’s judgment and reasoning. based on assessing a person and evolving a baseline
at the point of entry into the program, setting goals
The Project Method–John Dewey and objectives in the order of priority and
John Dewey’s ‘Project Method’ envisages a converting the goals and objectives into concrete

273
lesson plans which include the teaching steps, the Curriculum–Diploma in Special
planning strategies for use, the material selection Education Curriculum and Teaching
and finally, evaluation. Manual
Teaching strategies and programming
Behavioral Technology consideration given below are being followed
Although behavioral technology principles in sporadically in some special schools.
all cases not only ticked to certain model of
teaching, but also incorporated the principle of Teaching Strategies and Programming Considerations
task analysis, condition of promoting learning in Success in educating profoundly and severely
special integrated setting. handicapped persons require extensive knowledge,
At the National Institute of Mentally a broad range of professional skills, and a positive
Handicapped (NIMH), Peshwaria and Venkatesan attitude. Required also is individualization. A sense
(1992) developed the “Behavioural Approach in of humor always helps.
Teaching Mentally Retarded Children” which has Since a successful approach on a day might
been tested in class rooms and at homes. Parents be the antecedent for a behavioral problem on
and teachers can develop programs suited to the
another, it is important to have a variety of teaching
specific needs of an individual child.
strategies in one’s instructional repertoire.
The teacher is also acquainted first with the
behavioral assessment of the person with reference Instructional Programming and
to the current level of functioning, and the current Organizational Strategies
problem behavior/s.
Normalization Considerations
The teacher must then assess each child’s Age appropriateness: Selected instructional
performance rather than its deficiency, that is, what materials and activities must be suitable for non-
he can do rather than what he cannot do. handicapped individuals of the same age and those
The behavioral assessment tools available in reflecting the student’s cultural and ethnic
India are: MDPS, NIMH assessment schedule, background as well as the cultural diversity of his
Functional assessment tools, and problem behavior society. Age-appropriate reinforcement must be
management system (NIMH). used.
While teaching, the teacher has to identify Help the student to look and behave as
and analyze problem behavior and use behavioral appropriately as possible as those deviant get
techniques to manage the same. The details are stigmatized. Involvement in activities with non-
given in the manual and the teacher has to go handicapped peers and interest in their welfare
through the orientation. Studies done by Narayan, must be encouraged.
Peshwaria, and Myeredi support its effectiveness.
Even though research studies prove the
Teacher Behavior
effectiveness of the Behavioral Approach, Respect the student’s privacy. Use your voice
evaluating on that basis is not yet practiced at every to communicate, supplemented by gestures
teaching institution. whenever possible. Remain calm and poised no

274
matter what. Be familiar with handling assistive Progress
devices used by the handicapped. Provide the student with immediate feedback
Avoid stereotyped judgments. Do not assume of results, i.e., reward him as soon as possible after
that on account of his handicap, a person is unable he has attempted, approximated, or achieved a task.
to acquire some skills and/or not participate in some Inappropriate or incorrect performance at a task,
activities and events. Assign the student a classroom should be stopped promptly.
responsibility no matter how severe his handicap Construct charts to demonstrate progress and
and no matter how small the task. monitor required behavior, encouraging those who
Show appreciation when there is progress or want to be a party to the process.
compliance with your request which may be a giant Demonstrate the finished product whenever
step for the student. A show of warmth, interest, possible. Display the student’s work at school
and love will elicit positive response. Flexibility is exhibits, on bulletin boards, etc.
desirable in carrying out lesson plans, especially, if
unexpected negative behavior occurs which Instructional Considerations
requires immediate action. Change of activities, such as alternating quiet
ones with those involving gross motor actions, will
Human Resources
maintain the students’ interest. If an activity has
Seek the co-operation of other teachers, several steps, practice them in sequence. Physically
professionals and support staff. Community guide the student through an activity whenever
helpers can assist in normalizing the lives of your he is unable to do it by himself, providing only
students. Train teacher aides, parents, grandparents, enough assistance required to participate in or
and house parents, as agents of carry-over and complete a task. Use pantomime, which helps to
practice. isolate the required movements, to demonstrate a
skill.
Materials
Tell the student to observe and imitate your
Use exciting materials and activities from
actions. Use peer models whenever practical. Use
other disciplines. Use of current materials, toys,
role playing, puppet play and creative dramatics to
games, television shows, and music to motivate the
stimulate real experiences and to practice skills.
student contribute to success. An element of
surprise, suspense and novelty goes a long way.
Skill Demonstration
Goals Teach a skill at the time of its functional use,
i.e., when it occurs naturally.
Be realistic in planning goals to avoid
frustration. In selecting instructional targets, future Due to wide diversity among the
functioning of the child must be kept in mind. handicapped, personalising instruction is essential.
Programming in small steps helps the student to
Be sure the student knows exactly what is
be successful.
expected. Be consistent.

275
Instructional Grouping learning area and place him in social isolation for a
One-to-one instruction is often not practical short period of time, explaining the reason for his
in classrooms. Organize your lessons in such a way removal. Placing him near other students, right
as to take advantage of the benefits of peer tutoring next to you, or involving him in a new activity when
and buddy systems. he returns is advisable.

Reverse Programming Evaluation


When working on some motor skills 1. Evaluation should be a continuous
consisting of a series of separate motor events, process. Develop criteria to assess how
program in reverse. For example, the backward effective a particular technique or activity
chaining approach is helpful in teaching the tying has been in achieving a desired goal.
of shoelaces. Starting in the middle of a sequence 2. Whenever possible, and when
may also be appropriate for some students. appropriate, self-monitoring should be
encouraged.
Task Analysis
Teaching-Learning Materials(TLM) for
Use a task analysis approach whenever Persons with Mental Retardation
possible.
It is found in literature that we learn 1.0
Teaching Environment percent through taste, 1.5 percent through touch,
3.5 percent through smell, 11.0 percent through
Consider the environment, i.e., the home, hearing, 83.0 percent through sight and we
the school, in which the teaching activities are to remember 20 percent of what we hear, 30 percent
be presented. of what we see, 50 percent of what we see and hear,
Use mirrors for visual monitoring, especially 80 percent of what we see, hear and do.
in observing the movements required to make Therefore, the teaching learning process
speech sounds so that the student can see himself should facilitate active participation of the students.
as he is performing a task.
Since students with mental retardation have
Disturbing Behavior/s less ability to grasp, maintain and generalize the
learned concepts, extensive use of appropriate
Substitute a constructive activity whenever
learning material is very much warranted.
a maladaptive behavior, such as a destructive or self-
stimulatory activity erupts. For learning to be more meaningful, students
must be provided with experiences of manipulating
Deviant behavior should be corrected in a the material themselves.
positive manner. Say ‘This is the way to play the
game’ simultaneously demonstrating the desired Learning Aids and Functional Aids
behaviour. Special teachers use both learning aids and
Use of reprimands when necessary, can be functional aids. Once the student learns a concept,
effective in structuring behavior. the utility of a specific learning aid ceases whereas
the same may continue to be used as a functional
Remove the disruptive student from the aid.

276
Teaching Learning Material for Persons with Mental color is taught in the stages of matching,
Retardation identification and naming. Similarly, the
The Department of Special Education, concept of counting meaningfully cannot be
NIMH, had undertaken a project on the taught without teaching one-to-one
development of learning materials, specifically to correspondence.
teach persons with mental retardation. Twelve units • Concept teaching should be transformed into
of hardware material, four work books and four a series of joyful, games, e.g., Ludo, Bingo,
flip books were developed, designed in a way that Treasure Hunt, etc.
the same unit could be used with pre-primary to Much repetition with variations is required.
pre-vocational level students to teach a specific core Different ways to use the same teaching-learning
area and across different core areas depending on material, in the form of activities and games must
the intention of the user. The prototypes were field be thought of.
tested and modified.
The same Department also developed Conclusion
software packages on literacy and numeracy under As per the AAMR definition, persons with
the project on Computer Assisted Instruction. In mental retardation require individualized program
continuation, development of software packages plan in adaptive behavior. Teaching learning
on Literacy, Numeracy, My Country, Living and materials have to be procured/ prepared for training
Non-living, Health and Hygiene, Sports and of the target behavior selected.
Games, Community Utilization is in progress. Individualized program plan, a complete
TLM should be age appropriate, readily plan, has been introduced in all teaching and
available, prepared from local material, inexpensive, training programs all over the country. However,
attractive and colorful. its implementation falls short of the thoroughness
and the accountability desired. Social accounting
The following points must be borne in mind:
and social audit systems have to be put in place.
• Teacher should be aware of the hierarchy of
concept development, e.g., the concept of

277
Chapter 9

Parents’ Movement–Involvement

Introduction brought out. Parents felt an urgent need to come

I n the last few decades, an upsurge in the parent- together to have a clear understanding of the
support groups has been seen so as to initiate, challenges, to plan strategies to meet them and to
promote or support rehabilitation services for share concerns and experiences, etc.
persons with mental retardation and their families. The realization, in the sixties, on the part of
The parents’ movement provides direction the parents to come together has come to be known
to the mechanism of service provisions, bringing as the National Parents Association–Parivaar.
transparency of the available services to persons
with mental retardation and their families. Historical Background – Parents’
Associations
The First All India Conference on Mental For the formation of the first few parents’
Retardation, New Delhi, 1966 associations in India in the sixties and seventies,
The then Prime Minister of India, Smt. the initiative was taken by a few dedicated parents
Indira Gandhi, said in her inaugural address in Bombay, Ahmedabad and Bangalore. During the
delivered at the First All India Conference on seventies and early eighties, there was a steady
Mental Retardation, held in New Delhi on growth in the number of parents’ associations all
November 26, 1966, where many professionals, over the country, all functioning independently of
but a few parents were present: “Without the each other even though they were working for the
same objective, viz., for the welfare of persons with
dedication, understanding and cooperation of the
mental retardation and providing them with many
parents not much progress could be made. Parents
facilities for their education, training them to be as
should realize that by helping other children they
independent as possible and including them in the
will be helping their own children.”
mainstream society.
A Forum for Expression of Needs of
The Role of the National Institute for the
Parents for their Children
Mentally Handicapped (NIMH)
At the conference, professionals and parents
Development of parents’ associations got a
of persons with mental retardation and associated
further boost because parent empowerment was
disabilities expressed their difficulties. Inadequacies
one of the objectives of the NIMH established by
in the infrastructural facilities from early
the Government of India in the early eighties.
intervention to independent living, medical care,
special education, counseling for parents and social In the nineties, the NIMH promoted the
security for their wards were some of the issues parents’ movement by organizing two National

278
Parents’ Meet in 1993 and 1994 at its campus in Parivaar amended its constitution to include
Secunderabad, subsequently playing a crucial role services to persons with Autism, Cerebral Palsy and
in the formation of Parivaar to consolidate the Multiple Disabilities, in its sphere of activities in
parents’ movement in India. concurrence with the objectives of the National
Trust Act, 1999.
Formation of Self-help Groups and
Parents’ Associations Recognition of Parivaar - At National
Consequently, during the late eighties and and International Levels
nineties, parents of persons with mental retardation Over the past decade, Parivaar, has been
and of persons with other developmental recognized at the national level, as an apex body of
disabilities came together to form self-help parent parents’ associations. Some of its significant
groups and parents’ associations, an important achievements are:
development in the rehabilitation process of these • Playing a significant role in the
persons. enactment of the National Trust Act for
Another milestone reached in November, the welfare of persons with autism,
1994, was the initiation of the National Parent Body cerebral palsy, mental retardation and
with the technical support from the NIMH. An multiple disabilities, in December, 1999.
ad-hoc working committee was formed and the Gaining a consultative status with the
“National Federation of Parents Associations” was Ministry of Social Justice and
established. Empowerment, Government of India,
with the inclusion of the Parivaar
The first one formed in 1968 in Ahmedabad, representatives in the various core
was followed by 15 States and Union Territories groups, the Central Coordination
in India. Presently 43 registered parent Committee and Central Executive
organizations are working for the welfare of the Committee at the Central and the State
persons with mental handicap in the country. levels.
Till 1980, there were only two registered • Conducting workshops and National
parent organizations in the country. Later, in Parents’ Meets to bring awareness
Andhra Pradesh alone 13 parent organizations were among the parents about the current
established and in Maharashtra, there were 6 issues pertaining to the problems of
(Peshawaria, et al., 1994). mental retardation and its associated
conditions.
Parivaar – Its Genesis • Organizing continuing education
In 1995, a few parents’ groups came together program on ‘Capacity Building’ and
to form the National Federation for Parents ‘Leadership Development’.
Association for Persons with Mental Handicap, • Organizing Round Table Conferences at
now known as Parivaar. There were only 22 New Delhi, Kolkata, Chennai, etc.
parents’ associations in its Parivaar. Today there during the last six years to bring parents,
are 170. professionals, Government and business

279
representatives to accelerate the and vocational training, their independent living
implementation of various legislations needs, in helping them find/keep a job and to
pertaining to disability. participate in leisure time, social and creative
• Initiating pilot projects as follow-up activities in the community. Bringing about
action, in inclusive education, rural changes through the existing social institutions and
health, employment generation and legislative channels is also being pursued.
independent living in West Bengal and
Tamilnadu. Formation of Other Associated Groups
• Forming state-level coordination Sibling Groups
committees to follow-up the decisions
Involvement of sibling groups, sponsored by
of the Round Table Conference.
parents’ associations, helps in promoting a healthy
• Having a joint venture with Inclusion
integration and interaction of the persons with
International, the international apex
mental retardation in mainstream community. The
body of parents associations, to promote,
siblings are encouraged to participate in the
support and strengthen the vital
training, habilitation and awareness building
programs of Parivaar.
programs and in conducting various leisure-time
• Execution jointly with Inclusion activities.
International, of a research project, a first
in India, a study on the Methods and Family Cottages
Procedures Used to Improve the Quality
Children with mental retardation, their
of Life of Persons with Intellectual and
parents and family members, can utilize the Family
Developmental Disabilities.
Cottage Services on the NIMH campus for 1-3
• The Parivaar members, in the know of
weeks depending on their needs, to promote the
the provisions in the epoch-making UN
dual needs of the child’s training and to meet the
Convention on the Rights of Persons
individual needs of parents and other family
with Disabilities and demanded the
members to promote healthy functioning.
ratification of the Convention by India.
Such residential programs of short duration
Parents’ Movement – Its Support Systems are also being provided at Vellore (1986) and
The UN Convention helpng in a big way, Bangalore (1993).
the parents’ associations have been addressing
advocacy issues, such as public perception of Other Service Models – With Parental
mental retardation, protection of their legal, civil Involvement
and human rights.
Home Based Models
The Parents’ Associations have taken up the
Itinerant workers making periodical home
task of bringing the families of persons with mental
visits to guide the parents have not been feasible,
retardation and associated conditions to speak
about their needs— in taking care of their academic on account of the heavy finances involved.

280
Centre Based Models children with mental retardation.The focus is more
The Centre Based models provided the base on the child’s learning.
for the formation of parents’ associations. Parents are encouraged to attend group
Models which can be handled by groups of activities along with their children and serve as
parents as carryover agents at home are becoming mediators in training their children.
more feasible in the Indian context.
Early Intervention Programs Initiated by
One such model, the Madhuram Narayan Parents’ Groups
Centre for Exceptional Children, Chennai
After the research study in Chennai, in 1968,
provides for the total involvement of parent groups
early intervention programs were initiated by
at the Centre in the initial period between birth
and two years, after which the parents are weaned • The Andhra Pradesh Association (Gool
away when their children become more and more Plumber, 1980).
self-sufficient. The parents continue as carry over • The Karnataka Parents Association
agents at home. The Center provides services from (Mathias, 1981).
five different centres in Chennai.
Other early intervention programs were in
Empowered by the compounded strength of
• Chandigarh (Tehal Kohli , 1986).
the many parents involved at the Center, the
mothers in particular felt the time was appropriate • Karnataka (Indumathi Rao, 1980).
for them to take up “serious issues jointly with their • Tamil Nadu a research study taken up
spouses”. Thus Maithree Parents’ Association was in 1986 (Jeya Chandran, Jaya
formed. Krishnaswamy), to develop training
modules in early intervention.
NIMH–Centre Based Model
The workability and suitability of the
Centre Based Individual Model is used in
program was established and the modules were
the Child Guidance Clinics and in institutions
published. A Research-cum-Demonstration
providing individual-based interventions by a
Centre was also established at Chennai–Madhuram
multi-disciplinary team of experts.
Narayan Centre for Exceptional Children.
At NIMH, Secunderabad, a management
program is designed by various professionals for Research with Families
parents as per the needs of the child to carry out Epidemiological studies in the understanding
the program at home. Each family along with the of families as support groups is still in a nascent
affected child has the opportunity to work out their stage in India.
individual concerns on a one-to-one basis.
The major focus has been on studying the
Centre Based Group Activities feasibility of training mothers (Boaz, Jeychandran,
Due to paucity of facilities in the twin cities 1968) and on the positive attitudinal change in the
of Hyderabad and Secunderabad, the model was parents towards their children with mental
adopted at NIMH to reach out to large number of retardation.

281
Studies on the needs of parents in terms of Challenges
reasons for institutional placement were conducted Parents’ movement in India has faced
(Rastogi, 1981; Bhatti, et al., 1985; challenges. They are:
Channabasavanna, et al., 1985; Devi, 1976;
• The services still continue to be basically
Hariassara, 1981; Srivastava, 1978; Mazumdar &
child oriented; the emphasis is still
Prabhu, 1972; Chaturvedi, S.K. & Malhotra, S., largely on child skill training rather than
1983; Chaturvedi, S.K., & Malhotra, S., 1984; on helping build strengths in the parents.
Prabhu, 1970).
• Facilities for counseling parents and
Impact on the parents was studied by family members to cope with the
Seshadri, et al., 1983; Sequiera, et al., 1990; Sethi emotional needs and responsibilities of
& Sitholey 1986, Tangri & Verma, 1992; Wig, et handling a child with mental retardation
al., 1985. is still not within the reach of all.
• The focus currently is on extending
Investigations into social-emotional support
parents’ services, and on encouraging
for parents was presented by Moudgil, et al., 1985; parents’ involvement in programs for
and the treatment seeking behaviour of parents was training and habilitation and training
taken up by Chaturvedi and Malhotra, 1982. different levels of workers, parents have
Consumer deemed services by parents the strongest voice. Being a constant
(Peshawaria, Venkatesan and Menon, 1988); and factor in a child’s life, the family teaches
the child ethical values and behavior.
parent needs was presented from a conceptual
Since they sacrifice the most, parents’
framework (Peshawaria and Menon, 1991).
self-support groups need to be
Family Intervention Services Program Plan strengthened.
is developed, implemented and evaluated to On the positive side:
encourage and initiate such systematic services in
• Sarva Siksha Abhiyan, the
the country and to promote scientific research in
comprehensive action plan for inclusive
the area of understanding and working with Indian
education for persons with disabilities,
families. will immensely help the parents’
The NIMH-Family Needs Schedule movement.
(NIMH-FAMNS) has been developed to assess the • The National Policy for Persons with
individual needs of the family including needs of Disabilities will determine the course of
each of the family members, i.e., parents, siblings action the parents’ associations will have
and grandparents. to take in the coming years.
• Parivaar and its various affiliates have
A study on Need-based Family Intervention
given the required inputs on the
model is presented to make family intervention a
inadequacies in the policy document and
reality in the field of rehabilitation of persons with
have urged upon the Government to
mental retardation in India. revise it in the light of the U.N.
Convention.

282
Conclusion As a consequence, complex ethical and legal
The parents’ associations have the issues have been raised and many remain
ombudsman’s role to oversee that the system unresolved. There are also adjustment problems
fulfills the needs of the persons with mental among the various professional bodies. Even
retardation. The last few decades have been a time advocates dedicated to improving the lives of
of rapid change, in ideologies, legal systems, persons with mental retardation are often divided
technological advancements and in the provision on some of the most critical issues. These are
of services, which has been beneficial to persons necessary corollaries of progress of the persons with
with mental retardation. mental retardation in making the transition from
being the discarded, deviants to fully participating
members of society.

283
Chapter 10

Innovative Practices in the


Field of Mental Retardation

Introduction Yoga, practised regularly and systematically,

A disability is due to the inter play of several helps in focusing attention on the activity that is
genetic and ecological factors. No single being performed, in achieving higher levels of
method or technique can deal effectively with the performance by exploiting one’s potential fully and
various aspects of a disability such as mental in relying on one’s abilities, making one healthy,
retardation and its associated conditions. and having better relationship with others.
The Yoga Mandiram (1977) has introduced
Important and Innovative Programs yoga in a joint research project with Vijay Human
“Innovation” refers to something new or Services, Chennai, a service organization, for
different in approaches – techniques, methods persons with mental retardation.
which are introduced to deal with the situation or
condition which is to be managed so as to bring Yoga for Persons with Mental Retardation
about required changes. • The person should maintain a certain
Some of the important innovative programs amount of steadiness in the posture
in the field of mental retardation are: without much effort or tension, “sthira”
(Desikachar, 1982).
• Yoga and its effects on the child with
• Comfort and steadiness in a posture is
mental retardation.
attained through undistracted
• Community Based Rehabilitation in the concentration of the mind on posture.
community. • The practice of asana is coordinated
• Augmentative Intervention, the catalysts. through regulated breathing, that is,
through pranayama.
Yoga–The Tradition
Yoga is known for its time tested legacy in Yogasanas–Selection and Introduction in the
health care which includes prevention and Curriculum for Training Persons with Mental
treatment of ailments. Retardation
Fifteen asanas suitable and not contra-
Definitions indicative of its effects at any stage during training
Yoga is bringing two things together to unite were introduced into the curriculum for their
(V. S. Apte, 1979). It causes the movements in the training. They were: Adhomukha, Savasana,
mind to come together and helps one achieve the Apanasana, Bhujangasana, Cakravakasana,
fullest of his capabilities (Desikachar, 1982). Dvipadapitham, Tadasana, Janusirsasana,

284
Paschimataasana, Parsava Uttanasana, down hyperactivity, improving appetite, sleep and
Salabhasana, Trikonasana, Utkatasana, general health. It also alleviated some of the
Uttanasana, and Vajrasna. conditions associated with mental retardation.
Since 1977, four workshops at the national Breathing exercises and chanting have
level, have been conducted for special educators augmented the effectiveness of speech therapy.
who have had at least three years experience of Improving bilateral activities, relaxation exercises,
practicing yoga with persons with mental bending exercises, promoting attention, and
retardation. concentration span could also be facilitated with
the support of yoga.
Aim of the Study
Absenteeism had come down, thereby time
The study explored the feasibility and available for learning has increased and the
suitability of practicing yogasana as a therapeutic improved general health facilitated the persons to
co-curricular activity by the special educators, for learn more effectively without disruption and
the total development of persons with mental disturbance in their training schedule.
retardation.
Rehabilitation Council of India (1986) has
• Yoga, as therapy, has the following introduced yoga as part of the curriculum of the
advantages: A time-evaluated system special educators’ training program. All the
that brings about the body-mind service-providing organizations have included it
coordination in a natural way permitting in their daily schedule of Individualized Training
appropriate choice of asanas; it is Programs.
economical, simple, easy to understand,
practice and adapt through either Reports on Studies
individual or group instruction. “Teaching Yogasanas to the Mentally
Results of the controlled study: Retarded” first published in 1980 was revised in
1983 and 1988 (Vijay Human Services and
• Those with mental retardation trained Krishnamacharya Yoga Mandiram).
in yogasanas reported significant gains
compared to a group without such input. In 1985, results of the study was presented
at the 7th World Congress of the International
• The trained special educators realize are
Association for the Scientific Study of Mental
best suited to teach yoga in a systematic
Deficiency and at the American Psychology
way for the development of persons with
Convention.
mental retardation.
Simplified “Teaching of Yogasanas to the
Overall Benefits Mentally Retarded” is accessible, free of cost, to a
Yoga helped improve the general functioning larger population in India and abroad, with
level of persons, maintained in some and translations available in Japanese, Korean, German,
preventing deterioration in others. French and Belgian.
It helped them in correcting postures, Yogasanas have been incorporated in
reducing obesity, controlling dribbling, bringing manpower development and training curriculum

285
dealing with mental retardation and including it program was planned to be set up, 6 girls, aged 18
in the school curriculum is on its way. to 20 years with hands-on experience in training
children with mental retardation, volunteered to
Community Based Rehabilitation help the professionals in training the wards in self-
Program (CBR) help skills, cooking meals for them, taking them
CBR is a solution to the available inadequate out on field trips and in other tasks. With their
services to fulfill the needs of persons with mental experience, they were able to identify persons with
retardation, especially in the rural areas. mental retardation in their own villages, all located
within a radius of 15 km.
Definition–CBR (World Health Organisation)
As defined by the WHO, CBR involves Implementation of the Project
measures taken at the community level to use and The volunteers attended a crash course on
build on the resources of the community, including the basics, such as assessment, setting goals and
the impaired, disabled and handicapped persons objectives for each individual and on the
themselves, their families and their community as implementation of the individualized program plan
a whole. for those identified.
The Centre was located at a cost-free,
Facilitating Community Participation
residential facility in the village.
Community may participate (through
providing manpower, facilities, logistics support The helper resided in the premises. Ten
and funds) and may involve itself actively in children from in and around the area were brought
understanding the problems, feasibility of the daily by the parents for training. Initial
proposal for implementation and using primary programming was done by the special educator
care services for prevention and protection. from Alwaye.
Visiting staff from Alwaye initially gave
Community Based Rehabilitation (CBR) assistance daily tapering off to twice or thrice a week
Program for Young Adults with Moderate and later, once a month.
and Severe Mental Retardation
The Arivalayam Community
Pilot Study–Alwaye
Rehabilitation Program
The first systematic CBR Project in India was
A CBR program was initiated at Arivalayam,
conceived and initiated at CSI Karunalayam,
Tiruchirapalli, Tamil Nadu, in 1985.
Alwaye, Kerala, in 1983. The same was
implemented in Chennai by Michael Gnana Durai The resource centre (instituted as a social
of the Christophel Blinden Mission and responsibility measure by the Officers’ Wives
Prof. P. Jeyachandran, Vijay Human Services. Association of the Bharat Heavy Electricals Ltd., a
public sector undertaking) was a school serving 220
Material and Manpower Resources from the persons with mental retardation, where 20 trained
Community special educators were assisted by an
At Alwaye, where the residential CBR interdisciplinary team of experts.

286
Arivalayam, and three other centres which because these future mothers would be well
came up later, jointly serve about 300 persons in qualified to take care not only of themselves but
all, in Tiruchirapalli district. also be vigilant to help other mothers in the
neighborhood.
Rationale for Selecting Arivalayam
Factors favoring Arivalayam were, adequate Selection of Personnel
infrastructure, technical know-how, willing Public notification and individual letters
administration and teaching staff, which were addressed to those involved in carrying out the
readily available for CBR manpower development, survey were the means used for selecting 20
and financial support from the Christophel candidates, 6 for the Arivalayam sponsored CBR
Blinden Mission, India project, the rest to be allocated to the collaborators
who were willing to run CBR programs.
Survey Techniques
For 45 days’ intensive training, 80%
Identification of persons with mental retardation to
earmarked for practical training and the rest for
be served: Two blocks, with the combined
academics, the expert committee at Arivalayam
population of around 50,000 people in the
drew up a curriculum based on the experience of
proximity of Arivalayam, were selected. About 12
the pilot project and the community needs. The
hours, the time allotted in the school curriculum
trainees lived in Arivalayam along with the
for community service, was utilized to give the
residents, the persons with mental retardation. A
orientation lecture-demonstrations to the girls-
special educator with over 10 years’ experience,
volunteers at the end of which they were evaluated
evaluated them periodically.
on their skill in identifying at least one person with
mental retardation from their respective villages. The base centre from where the majority of
Post-training, accompanied by a special educator the children were identified was selected in which
from Arivalayam, the girls, in groups of 10, children living within a radius of 2 km. were
screened persons with mental retardation, in door- brought using local transport. The special educators
to-door visits. The successful survey was due in a from Arivalayam served as resource persons who
large measure to the sensitization received by the were available full time for a week only and
village health workers, panchayat officers, school withdrawn when self sufficiency was achieved.
teachers, political party representatives and village
elders, who extended maximum cooperation. An Infrastructure
interdisciplinary team of experts confirmed mental Infrastructure from the noon meal centres,
retardation in the 50 children thus identified, public health and community recreation centres
except for 3, the slow learners, who were advised was made use of. One shed was rented. Periodic
to attend regular schools. evaluation was done by the interdisciplinary team
of experts.
Awareness Generated by the Survey
At each centre, one trained CBR worker and
The awareness generated in the villages one untrained aid or helper were paid monthly at
through the survey was a great achievement the prevalent rates.

287
Parental Involvement • Action Aid, Bangalore.
Parents were trained in a trade or a craft • Anand Niketan, Dist Burdwan,
specific to the village to generate income. Another W. Bengal
strategy was to have them interact with similar • Arivalayam, BHEL, Tiruchirapalli, Tamil
parents from Arivalayam in one-to-one dialogues Nadu
and later in group discussions.
• Blind Men’s Association, Ahmedabad,
Involving the Panchayati Raj System–For Effective Gujarat
Implementation and Sustenance of Community Based • CBR Forum India, Bangalore, Karnataka
Rehabilitation Programmes • Central Institute on Mental Retardation,
Though the entire project has been funded Thiruvanthapuram, Kerala.
by the CBM, still talks were in progress to involve • Chetana, Bhubaneshwar, Orissa.
the Panchayat in each village to assist the CBR
• Mano Vikas Kendra, Kolkata
programs and to share in generation of funds to
make them self-sustaining. A nominal, monthly • National Programme for the
contribution from each household could pay for Rehabilitation of Persons with
the services of CBR workers/special teachers and Disabilities (NPRPD), Govt. of India
assistants. • National Institute for the Mentally
Handicapped (NIMH), Secunderabad,
Arivalayam Community Rehabilitation Andhra Pradesh
Project • National Institute for Mental Health and
It presently creates awareness with the Neuro Sciences (NIMHANS),
cooperation of the members of the community, Bangalore, Karnataka
conducts follow up programs on high risk parents
• Samadhan, New Delhi
for prevention of disabilities, implements centre
and home-based early intervention programs, • Sewa in Action, Bangalore, Karnataka
teaches functional skills required at the community • Thakur Hariprasad Institute,
level, gives vocational training (in the locally Rajahmundry, Andhra Pradesh
available trades either in the family or in the • Verar Program, Mumbai
community) to help augment family income and
There are about 100 voluntary organizations,
arranges referrals.
which provide the CBR services with government
support up to 95% of the expenditure.
Arivalayam – A Parent Body
Arivalayam – A Parent Body is a resource National Open School (NOS)
centre for manpower and material development,
Many service organizations and some
which initiates, coordinates and monitors CBR
mainstream schools have affiliated themselves with
programs, interfacing with two other collaborators.
the NOS system of education up to the secondary
Supported by various international agencies level and technical instruction level, mainly to the
and government organizations, several CBR hearing impaired, slow learners, learning disabled,
Programs were initiated by organizations such as those with autism, and cerebral palsy.

288
They appear for examinations at their own Augmentative Interventions
pace and the certificates received enable them for Apart from special education, other
higher levels of education and placements. augmentative interventions, given to persons
with mental retardation, are mentioned below.
Integrated Child Development Scheme
(ICDS) Chanting
Health workers, urban and rural, who are Vedic chanting practiced by persons with
given periodical inputs in health care, in early mental retardation has shown positive effects in
detection and identification and referrals to the articulatory movements of the lips, the tongue, and
health workers, nutrition, growth monitoring, and in matching the pitch in sound production (Sriram,
child guidance, visit the ICDS Centres regularly Germany).
to implement the scheme developed by the
Government of India with funding from Dance Therapy
international organizations. Rhythm, facial expressions, body language,
are the different facets of dance in which training
Adult Leisure and Learning Program
can be given. Music as an accompaniment adds to
(ALLP)
the therapeutic effects.
An earlier survey conducted in Delhi in 1980
by the Federation for the Welfare of the Mentally Dance promotes the spacio-motor
Retarded, observed that persons who had received perception and bilateral movements; it provides
systematic schooling up to adult years were not follow up to balancing skills, posture corrections
directed to engage themselves in any productive and other fine and gross motor skills required in
or meaningful occupations. performing daily living activities. As a medium of
expression through facial expressions, symbols
With their active participation, an (mudras) and body language, dance has facilitated
improvement in the quality of life, particularly in acquisition of effective communication skills and
the years after completion of school life was social interaction (Jyotsna Buch, Chennai and
noticed. The young adults participate in very
Tripura Kashyap, Bangalore).
structured and activity-oriented recreational and
learning activities, such as, story telling, playing Percussion
games, learning simple cooking, visiting post
Percussion facilitates in the areas of number
offices, banks, etc., which leads to greater
learning, promotion of bilateral activities, sensory-
participation in community and family life.
motor coordination, posture, finger dexterity, fine
Foster Care Home motor skills, and multi sensory stimulation.

Foster Care Home is a special home for The Central Institute, Tiruvananthapuram,
children with mental retardation who require Kerala; Thakur Hariprasad Institute, Hyderabad,
accommodation and special care. Almost all the Andhra Pradesh; Mano Vikas Kendra, Kolkata,
States have initiated establishment of foster homes West Bengal; Sashi Mangalyam and Mrs. Vakil’s
for their practicality and traditional approach. School, Mumbai, Maharashtra have introduced
this in their curricular training.

289
Instrumental Music Other Therapies in Practice, yet to be empirically
Many music band teams have been formed documented
by children with mental retardation all over the Acupressure, acupuncture, ayurvedic
country. massage, aroma therapy, brain gym, flower
remedies, horse therapy, pranic healing, reikhi, tai
Instruments, both string and wind, and the
chi, varma kalai.
modern day keyboard have also been introduced
in special schools. Training to play on these
Conclusion
instruments facilitates sensory motor stimulation,
finger dexterity, fine motor skills, and breathing. Yoga for persons with mental retardation is
now an integral part of any training program for
Hydrotherapy persons with mental retardation.
Hydrotherapy facilitates observable increase Community Based Program, a traditional
in mobility, and improved balance and postures, practice in India is now an accepted practice in its
gait improvement, treatment of hyperactivity in new form, to reach the services at the community
those with associated motor problems. Cost factor level and serve the large population in need. The
has restricted its introduction in more centers. efficacy of the various other systems need to be yet
studied.

290
Chapter 11

Policies and Programmes

Introduction trained resource teachers support the mainstream

T he Constitution of India (1950), Article 41, school teachers in providing appropriate education
states the ‘Right to Education and Work’ and to children with disabilities.
Article 45 on ‘Free Compulsory Education for All The move for education of persons with
Children up to the Age of 14 Years’, both Articles disabilities is its inclusion in the National Policy
are inclusive of children with mental retardation. on Education, 1986. Project Integrated Education
The Education Commission, 1964-66 of the Disabled Persons (PIED) is an outcome of
directed to move education for persons with this policy.
disabilities from that of the charity mode to one of
the rights mode, hoping that at least 5 per cent of The National Policy on Education (NPE)
the persons with mental retardation should have The National Policy on Education (NPE)
received education by 1986. It lay emphasis on formulated earlier was acted upon in May 1986.
making persons with disabilities as useful citizens
in their adult lives. • Specific recommendations made in the
policy document (NPE, 1986, 1992)
The Commission further recommended that were in the areas of integrated education
both special schools and schools in the integrated
for persons with mild disability in the
school system should include persons with
mainstream schools, special schools for
disabilities.
persons with severe disabilities with
The National Policy for Children, 1974 hostel facilities at district headquarters,
vocational training, reorientation of
The National Policy for Children, 1974
teacher training program to include
included children from the weaker sections of
persons with disabilities and services
society and disabled.
provided by voluntary organizations.
Integrated Education of Disabled The State governments are now opening
Children (IEDC), 1974 facilities for at least one school in each district,
Supported through research conducted by either day care or residential to provide educational
the UNESCO, the program for Integrated facilities to children of that particular district. At
Education of Disabled Children (IEDC) the district headquarters, service centres also
implemented by the Ministry of Human Resource provide for diagnosis, referrals, and interventions.
Development in 1974, aimed at promoting access Parents work as carry over agents at home for their
to education for all children with disabilities. The children.

291
The International Year for the Disabled Integrated Education
Persons (IYDP), 1981 The term “integration” is based on the
India was one of the signatories to the “principle of normalisation” that “you act right
resolution IYDP, 1981 endorsing the objectives set when making available to all persons with
forth in the resolution of the General Assembly. intellectual or other impairments of disabilities,
It was visualized to: patterns of life and conditions of every day living
which are as close as possible to or indeed the same
• form a National Policy for the disabled. as the regular circumstances and ways of life in their
• to provide a network of services with communities”.
focus on the rural handicapped,
The ideology on which integrated education
• to set up National Institutes, and is based is reflected in a unitary system of education
• to establish special education cells in the and the approach rests on the fundamental
State Councils of Educational Research principle of education, “all children are special”
and Training (SCERTs), State Institutes (Billimoria, 1999, p. 2.).
of Education (SIEs), etc.
The Kothari Commisision, 1964-66 and
The then Ministry of Welfare and the
UNESCO in the 1970s recommended that those
Ministry of Education and Culture appointed an
children who are capable of being educated in the
Advisory Committee to make salient
mainstream schools should be given equal
recommendations to the Government to initiate
action regarding early detection, prevention, opportunity through integrated education.
medical and physical rehabilitation, education UNESCO advised the developing nations to
and training of handicapped including teachers direct their national policies towards equal access
training, employment and the role of NGOs and to education (1973, 1977).
creation of public awareness.
Many voluntary agencies and private schools
Project Integrated Education for Disabled have also implemented different models of
(PIED), 1987 integration with special educational support in
urban settings.
In support of the IEDC program and to
provide further impetus, the Project Integrated The major functional approaches of
Education for the Disabled (PIED) in 1987 was Integrated Education are:
piloted by the NCERT and supported by the • Assimilation of children with mental
United Nations Children’s Education Fund
retardation.
(UNICEF) in remote villages which were divided
into blocks of 80-100 schools for program • Removing the feeling of inadequacy
implementation. Through the project, cooperation and insecurity among the children with
of local officials, NGOs, community members, mental retardation.
and parents was solicited. A three-phase training • Promoting professionalism among
program targeted all teachers initially and teachers.
culminated with introducing Teacher Education • Creating new skills and attitudes among
program at the community level. the teachers.

292
The most effective means of combating Although the DPEP was initiated in 1994 as
discriminatory attitudes is by creating supportive a Government program, Integrated Education for
communities, building an inclusive society and the Disabled was added as a program component
achieving education for all. in 1997.

In India, the National Policy on Education To begin with, states were provided with
(NPE) in 1986 stated, “the objective should be to assistance to prepare action plans. By 1998, many
integrate the physically and mentally challenged states had initiated surveys and formal assessment
with the general community as equal partners, to camps and evolved strategies to provide resource
prepare them for normal growth and to enable support to children with special needs.
them to face life with courage and confidence”.
Residential Program
The Government has established several Residential centres have been established for
institutions across the country for improving the the persons who have transport difficulties to reach
education processes. They are: special schools, those who require constant medical
• The State Council of Educational and custodial care, which parents and care givers
Research & Training (SCERT). are not in a position to give.

• Institutions for Developing Activities in Special Schools


Planning and Management.
Special schools, the largest in number for
• The National University of Educational persons with mental retardation in the country,
Planning & Administration (NUEPA). provide for individualized attention not available
• District Institution of Education and in mainstream schools, though they have led to
Training (DIET). their social segregation with non-retarded peers.
• The State Institute of Education One way of introducing integration in special
Management and Training. schools is by encouraging non-disabled children
The National Policy on Education, 1986, the to come into special schools under the National
Persons with Disabilities (Equal Opportunities, Social Service Corps (NSSC) or Socially Useful
Protection of Rights and Full Participation) 1995, and Productive Work (SUPW) schemes. As
The Rehabilitation Council of India (RCI) Act, innovative teachers build in to their curriculum,
1992, have given the needed impetus to the activities that take the children out into the
establishment of community, shops, post offices, restaurants,
involving bus travel and so on, they create
• an International Centre for Special opportunities for integrated septum.
Needs Education, by the National
Council of Educational Research & Special Class
Training (NCERT) in collaboration with Special Class in a regular school is mainly
UNESCO, for children with moderate and severe mental
• the District Primary Education Program retardation, whose educational needs are more
(DPEP). specific in nature, who can be integrated for non-

293
academic activities such as games, physical disabilities. Most special schools are residential so
education, music, art and crafts. they may serve populations from remote rural areas
and from States which have limited services.
The Community Based Rehabilitation
(CBR) Mental Health Act, 1987
The Community Based Rehabilitation As the Mental Health Act was not applicable
(CBR) programs, yet another governmental for persons with mental retardation, a legal vacuum
initiative to promote integration was launched in prevailed in the areas of protection of the persons
1985. with mental retardation, till the Persons with
Though not a new concept in India, the CBR Disabilities Act, 1995 came into being.
program is made more structured with funds The THPI, Hyderabad organized an All
allocated and local village leaders empowered. India Seminar to frame a National Policy for the
The CBR was not very beneficial for those Mentally Handicapped in February, 1987. A major
with mental retardation. However, they gained outcome of the event was the appointment of the
some amount of skills needed for social acceptance. Behrul Islam Committee, which was a prelude to
the subsequent Acts of Parliament in the area.
Ministry of Social Justice and
Empowerment The Program of Action, 1992
The Ministry of Social Justice and This was formulated after a debate on the
Empowerment is responsible for the rehabilitation NPE (1986, 1992) by the Ministry of Human
efforts, including administration of special schools, Resource Development (MHRD), Government of
with supporting assistance from the Departments India, for implementation of the plan for the
of Health, Labor, and Employment. Existing persons with mental retardation.
schools serve about 2 to 4 percent of all individuals
By the end of 1991-92, Integrated Education
with disabilities.
for the Disabled (IED) plan had been implemented
The vast majority of schools located in urban and the Project for the Integrated Education of the
areas and the others unevenly distributed across Disabled (PIED) in 1992 included mental
the country, approximately one-fifth of these retardation within its Plan of Action for education
schools offer secondary level education. in integrated settings, a status denied till then.
Even though non-governmental The faculty of 102 District Institutes of
organizations surpass government run special Education and Training (DIETs) in the country
schools, in both quantity and quality of services, received training in special education program in
not all of them have ‘inclusive’ settings, some not
the NCERT.
admitting non-ambulatory students.
Multi-category Teacher Training (MCT)
Non-Governmental Organizations courses (through NCERT, RCEs and with
(NGOs) UNICEF collaboration) and the National
The NGOs receive 85 percent of all Institutes ensured availability of trained manpower
government sanctioned funds for persons with to the special schools.

294
The programs are being monitored by the The Persons with Disabilities (Equal
Ministry of Social Justice and Empowerment, Opportunities, Full Participation and
Government of India. Protection of Rights) Act, 1995

At present, all SCERTs in the country have The Persons with Disabilities Act, 1995 has
special education units and all the DIETs have come into enforcement on February 7, 1996 to
trained special educators, and the NGOs have been ensure the full participation of persons with
assisted in meeting the challenges. disabilities in nation building activities.

The Ministry of Labour is providing training The Act provides preventive and
promotional aspects of rehabilitation. This includes
through Craftsmen Training Scheme (CTS),
education, employment, vocational training,
Apprenticeship Training Scheme (ACT) and
reservation, research and manpower development,
Vocational Rehabilitation Centres (VRCs) on a
creation of barrier-free environment,
continued basis.
unemployment allowance, special insurance
All in-service teachers, Heads of institutions scheme for the disabled employees and
and administrators have been receiving inputs in establishment of homes for persons with severe
the education of the persons with disabilities, disabilities.
through the DIETs established during the Eighth
Plan. The Economic and Social Commission for
Asia and Pacific (ESCAP)
The ECCE scheme through the ICDS, pre-
The Economic and Social Commission for
school programs, and the DPEP have included Asia and Pacific (ESCAP) at its forty-eighth session
disability education, inclusive of those with mental held at Beijing adopted a resolution 48/3
retardation, since 1999. proclaiming the period 1993-2002 as the Asian and
The RCI, through its linkages with the Pacific Decade of Disabled Persons.
National Council of Teacher Education (NCTE), The agenda for Action for Asia and Pacific
universities, international agencies, the National Decade of the Disabled Persons laid emphasis on
Institutes and the NGOs have been responsible enactment of legislation aimed at equal
for: opportunities for people with disabilities,
protection of their rights and prohibition of their
• standardization of curriculum, abuse, neglect and discrimination.
• monitoring and evaluation,
• assessment of teacher training, The National Trust for Welfare for
Persons with Autism, Cerebral Palsy,
• research and development in the field
Mental Retardation and Multiple
of disability including that of mental Disabilities Act, 1999
retardation and its associated conditions.
With the current trend towards a shift from
Since 1993, massive in-service programs and joint family to nuclear families, the care and
preparation of different categories of manpower management of the dependent children with
development, nation-wide have augmented the disabilities, after the life time of their parents has
services and the rehabilitation programs. become a great challenge.

295
The National Trust Act has made provisions locomotor disability), educational kits and supplies
for the appointment of guardians for those who for daily living skills.
have sought assistance and provided them with
residential facilities through organizations where National Program for Rehabilitation of
the prescribed standards of space, staff, furniture, Persons with Disabilities (NPRPD)
rehabilitation and medical facilities are maintained. The NPRPD provides the required
• This Act provides for the constitution infrastructure to provide rehabilitation facilities at
of a body at the National Level for the state, district, block and gram panchayat (village)
Welfare of Persons with Autism, level. Centre-based as well as community-based
Cerebral Palsy, Mental Retardation and programs and schemes for implementation of the
Multiple Disabilities and for matters programs at the state level, with financial assistance
connected therewith or incidental from the Centre.
thereto. Autism, Cerebral Palsy and
It is envisaged that the unreached villagers
Multiple Disabilities had not been
with disabilities will have services, and the
covered under the Persons with
community will be empowered.
Disabilities Act. Mental Retardation has
been included under this Act to
Science and Technology Project in
emphasize the guardianship
Mission Mode
requirement for persons with mental
retardation. The Act also envisages The Science and Technology Mission Mode
extending support to registered of Government of India supports projects in
organizations to provide need based Science and Technology in providing equal
services during the period of crisis in the opportunities and access to persons with disability.
family of persons with disability. The purpose was to reach out to persons with
National Handicapped Finance and disabilities in rural areas, with indigenous and
Development Corporation (NHFDC) effective methods on the one hand and for keeping
pace with the technological advances for ensuring
Any Indian with 40% or more disability, in
access and quality in their life, on the other.
the age range of 18-55 years, is eligible for the
scheme introduced by Government of India for The NIMH undertook a project funded by
enhancing employment of persons with disabilities. the S&T on computer assisted instruction for
Specific jobs have been identified for persons persons with mental retardation.
with intellectual impairment for availing the facility A total of six software programs for
of loan through the scheme. functional academics and independent living in
Scheme of Assistance to Disabled Persons for community is being used.
Purchase/Fitting of Aids and Appliances
Children with mental retardation are also
(ADIP)
trained in using these programs which helps in
Persons with mental retardation may receive raising their self-esteem. Universalisation of
free of cost, assistive devices (if there is an associated Education.

296
Special Education for Children with Sarva Shiksha Abhiyan–Education for All
Mental Retardation The Ministry of Human Resource
The UN Declaration, ‘Education For All’, Development, Government of India, implemented
particularly for children with mental retardation is the program in 2001 all over the country for
a big challenge which is being met by the children in the age group 6 to 14 years, following
Government of India through various schemes the policy of ‘Education for All’ in an inclusive set
having different dimensions. up.

• Children with mild mental retardation Special educators are appointed as resource
are educated in mainstream schools teachers for the special children, but the ratio of
special educators to the number of children
(with the required curriculum
‘included’ is not uniform for every block or in every
modifications) and in special schools
district.
with functional academics in the
curriculum if they cannot cope with the Prior to the introduction of the program,
former. children with mild/moderate level of retardation
had already been included in the normal course in
• Children with severe intellectual
mainstream schools.
disabilities or those who live in places
which have no access to school education The program is run by the non-
are on home bound programs. governmental organizations in Tamil Nadu and
run by the government in other States.
• The scheme for Integrated Education for
Disabled Children (IEDC) being This program has served its purpose in those
implemented by the Ministry of Human areas where special schools have not been
Resource Development is implemented established at all.
in the mainstream school, but as a
separate unit. The District Primary Education Program
(DPEP)
• The trained resource teachers support
the mainstream school teachers so as to The District Primary Education Program
provide appropriate education to (DPEP) towards universalization of primary
education including children with special needs has
children with disabilities in the Sarva
been implemented in a number of districts.
Shiksha Abhiyan inclusive programs of
education. • The DPEP includes children at the
• The National Institute of Open primary level (up to Class V) with
suitable teacher preparation,
Schooling (NIOS) is a program of open
infrastructural facilities and aids and
education, which includes children with
appliances.
mental retardation also.
• Children who cannot cope with the
• Those with borderline intelligence study
regular curriculum, attend special
at their own pace with a reduced
schools. There are over 2,100 special
curriculum content. schools run by NGOs with and without
• Vocation-oriented education. government support.

297
• Empowering parents by training them The Government has introduced 3% job
to teach their children in early reservation in the government sector for persons
intervention programs, serving as the with physical disabilities, but there is no quota yet
carry over agents in training at home is a for persons with mental retardation. However,
major mode of reaching out to children positive support is received through technical
where there is no access to school. assistance and finances from the NHFDC.
• The Tamil Nadu Government has set
up, through the non-governmental
Schemes of the Ministry of Health
& Family Welfare
organizations, 36 early intervention
centres, one for each of the districts. Prevention, Early Detection and Intervention
• By training the caregiver or the parent, Efforts of the Ministry of Health and Family
precious time in the child’s Welfare, Government of India are directed at
developmental period when maximum prevention of disabilities through increasing public
learning occurs, is not wasted. awareness, immunization, pulse polio
• Parents also develop a positive attitude immunization and sensitization of grass root level
and confidence in training their children workers and PHC doctors.
with mental retardation. Appropriate treatment and management of
• Such training is also center-based where epilepsy and related medical problems in children
parents accompany the child, learn the with intellectual impairment is taken up.
skills demonstrated, impart them to the
Training is imparted to professionals and
children at the centre.
parents on simple early intervention techniques to
• Another method is to have itinerant reduce and/or arrest the severity of the condition
teachers periodically to train the parents in their wards.
at home using locally available material,
which is viable and cost effective. Conclusion
With the above program in place, no child Quality of life of persons with mental
with special needs will remain unattended. retardation has been significantly enhanced.

Vocational Training and Employment of Families of the affected are being


Persons with Mental Retardation empowered. Self-advocacy measures are being
taken and independent living skills are imparted
In the past, vocational training was an
to the persons with mental retardation.
extension of the school program where traditional
routine skills such as weaving and crafts were Reaching the persons in remote, rural, tribal
taught. Today, with activity centres established, and hilly areas is a priority for the Government of
training involves matching the levels, ranging from India.
mild to severe levels of retardation, with open Educational and training programs suitable
employment, sheltered employment, family to the social cultural milieu of each region are being
supported employment. developed, so that persons with mental retardation

298
develop competencies to live independently in their Continuous research and development in all
own environments. dimensions of mental retardation is of utmost
importance for future development.
Translating the policies and training materials
in Indian languages in print and non-print media
to reach out to every person with disabilities in his
community is of prime importance. This task has
been undertaken effectively.

299
Chapter 12

Vocational Training and Employment

Introduction provide suitable vocational training due to shortage

P ersons with mental retardation are employable of trained manpower. Those available are also not
both in public and private sectors, in regular gainfully employed.
competitive work settings as well as in ‘sheltered’ Vocational training is related to the needs for
ones. Attention to their vocational preparation has marketable products identified through a survey.
gained importance since the enactment of the Market survey is an area which requires attention.
Persons with Disabilities Act, 1995.
Vocational Training and Rehabilitation
Overview
Vocational Training, pivotal to the
Training of persons with retardation and with rehabilitation of persons with mental retardation
associated conditions to their optimum potential can be given to the person who is independent in
has been possible through technological personal, social, emotional, life, independent in
advancements. With greater attention being paid survival, safety as well as work related skills.
to school programs and very little on vocational
training, progress has been slow. • About 400 institutions in this country
provide vocational training. So do some
Special schools in India provide education special schools.
up to 18+ years, the curriculum including pre-
• Special vocational centers have also been
vocational and vocational training. Yet, concern for
established.
transition from school to vocational training centres
has not been serious. • Still, many persons with retardation fail
to be employed due to lack of training
There are over 60 sheltered workshops where in social and work adjustment skills.
training is given on the traditional trades, such as Some special schools help by providing
carpentry, candle making, caning chairs, tailoring. insitu training.
The Departments of Welfare in the states do not
• Various stages followed in the area of
provide sufficient grants to such sheltered
vocational rehabilitation are
workshops as much as they do to the mainstream
educational institutions, though sheltered • systematic school instruction,
workshops have to pay wages to the trainees and • planning for transition,
do not charge fees (Divatia, 1979). • placement for meaningful
Though there are over 10 centres running employment, and
Diploma Course in Vocational Training, only a few • follow-up services.

300
Pre-reading, pre-writing, etc., the basic pervasive support. This support continues into
skills that permits an adequate development of their vocational training, placement and thereafter.
psychomotor co-ordination constitute the
In the developed countries, a minimum IQ
systematic school instruction at the pre-primary
of 20 is a requirement for productive work. In India
education level. Socialization and living together
training is offered only for those with IQs of 40 or
also begin at this stage.
above.
During the secondary level, job oriented
functional academics are reinforced and enlarged. Vocational Rehabilitation
Simple activities are initiated — a basis for the pre- The first step, assessment has to be in two
vocational stage. More attention is given to
areas: for the amount of support he/she may need
developing general work habits, well groomed
and assessment of the job opportunities available
appearance, communication skills and appropriate
in the community.
social behavior.
The five areas of assessment are: medical (for
At the pre-vocational period, development of
functional/organic limitations), physical (for
functional skills and appropriate social behavior
preparatory for transition are attended to. They are physical performance—effort and working
necessary qualifications for any vocation. capacity), psychological (for intelligence,
mechanical and constructional aptitudes, interest,
The objectives of pre-vocational training are:
etc.), educational (for personal, social, academic
imparting training and creating opportunities for
and safety skills), vocational (for skill level,
development of functional academics, personal
aptitude and occupational abilities).
social skills, survival and safety skills and work
readiness skills; developing adjustment skills by The purpose of community assessment is to
providing experiences in various life situations; and identify potential employment opportunities in the
normalizing work related behavior. trade in which training is given. Through
The activities involved at pre-vocational stage assessment, specific skills (which should be the
for transition are: survey of the employment same skills on which the trainees are assessed)
potentials in the community and desired entry level required for performance on a job on site is
skills; the student’s interest and aptitude identified.
assessment; individualized transition plan prepared
Surveys conducted on available jobs,
in co-operation with parents and employees
employer contacts and job analysis should provide
towards the end of school years; prior training of
the information which forms the basis for the
the students for a short period in the simulated set
vocational training programs.
up in the school.
Work skills include specific skills—job task /
Vocational Training is also meant for adults with
mental retardation who complete their special social, and related behavior that are necessary for
schooling with intermittent, limited, extensive and performing any given job.

301
After the selection of job site, specific skills trainer and with the necessary social competence.
are identified and targeted to provide systematic Careful selection is required to avoid exploitation.
and appropriate training.
Open–Supported Employment
Placement Area The proven efficacy of the program in the
The trained person moves towards one of USA, leads to a possibility of introducing the same
the three possible employments: in India, This by itself is ‘inclusion’ even at the
vocational levels.
(i) Vocational Potential of Young Adults and
Adults with Mild Mental Retardation Individuals with mild retardation are
relatively more suitable for open employment.
Persons with mild mental retardation
function in regular (competitive) employment. The following posts are suitable for open
Their performance depends on their training and employment: office boys, helpers in canteens, in
the support they receive from the agencies which shops—stationery and grocery. Operators of
have placed them. They may get placed in photocopying, cyclostyling and washing machines.
‘sheltered’ workshops where they may be under- Vehicle workshops, printing press are other possible
employed or isolated from the mainstream. venues.

Individuals with severe levels of retardation, Self-employment


usually work in sheltered workshops or in adult
Those families with resources can ensure
day-activity centers. The latter may not necessarily
self-employment. If the person with mental
be remunerative.
retardation has been given appropriate training in
(ii) ‘Sheltered’ Employment the particular job/task that the family has identified
The term, sheltered workshop is popularly or has it in its own family trade, then they are ready
understood in India to mean safety and protection. to provide supervision and support.

A person with mental retardation may be Self-employment can be counted as a good


trained in a sheltered workshop and employed prospect for individuals with mental retardation
there itself. Since their training in specific tasks in India. Dairy/poultry farms and agriculture are
matches their ability and working under good examples.
supervision, those with mild and moderate In urban areas, there is documentation of
retardation also benefit from sheltered some families employing persons with retardation
employment where developing the required social using their own resources in enterprises such as
competence is found relatively easy. Examples are, envelope making, agarbathi and candle making and
assembling and packing units in workshops, running a small pan shop.
carpentry units and in spray painting.
Self-employment can be very successful in a
(iii) Open Employment supportive environment.
The routine, repetitive jobs in the market can
be successfully performed by the individuals with Mobile Work Crew
mental retardation with initial support from the In USA, a person with mental retardation

302
functions as a member of a small group of workers Enclave
who perform custodial tasks guided by on-the job Enclave, also in practice in USA, is a group
supervisor. The mobile crew moves from site to oriented work setting, referring to a physical area
site. within a business area, where a small group of
In India, building construction work, persons with disability and a full time supervisor
maintenance of gardens/public places/places of are employed.
worship/parks/hospitals and restaurants may In India, ‘enclaves’, exist conceptually, but
provide opportunities for the mobile work crew persons with mental retardation are not usually
which should be organized to include persons with employed.
mental retardation also.

List of Jobs
The following jobs suitable for persons with mental retardation at different levels, arrived at after research:

Services (domestic) Industry (general)

Childcare Small parts assembly


Cleaning and room preparation: Home Soldering
Tourists’ Homes, Hotel, Hospital, Rest House Construction Labourer: highway, dam, and bridge work;
building construction

Services (food) Sales

Bus/train ticket vendor Helper: retail stores, shop. Stock clerk. Packer, wrapper.
Dishwasher: hand and machine
Helper (in cafeteria, restaurant and hospital):
cook, baker, general kitchen, service table.

Services (building) Public Service


Helper: general maintenance, porter at airport, porter, Helper: road maintenance, garbage and
only at a barrier free railway station, watchman, trash collection, park and grounds maintenance, painting,
lift operator. maintenance.

Services (personal) Trades and Services


Hospital, nursing, and rest house aide and orderly, Helper: auto body repair, bricklayer,
nurse’s aide, companion. carpenter, concrete finisher, electrician, mechanic, painter,
Helper: barber and beauty shop. pipe fitter, plumber, roofer, sheet metal solderer, steam
Washroom attendant fitter, stone mason, tile setter, upholsterer, wiper (machine),
welder and helper in all the construction work.

Industry (Textiles)
Helper yard goods clothing manufacturing Helper: cleaning establishment, laundries, rug cleaning,
Sewing machine operator diaper service, service station, car wash, parking garage

Industry (lumber and lumber products)


Helper: furniture factory, upholstery, toy factory, Machine operator: punch press, drill press, trimmer, buffer,
framing shop, box factory grinder, sprayer, gluing, leather cutting, foot-power printing
press, toner, straightener, wire bending, gear cutting

303
Industry (paper and paper products)
Helper: pulp mill, newsprint factory, stationery
manufacturing

Industry (printing) Office Work


Helper: newspaper, greeting card, printing, book binding Clerk: general, filing, mail handler, mail/messenger
Office machine operator: copier, mimeograph

Industry (leather and leather goods) Farmwork


Helper: leather manufacturing, leather accessories Hand: general farming, ranch, poultry, lumbering,
manufacturing, shoes and boot manufacturing forestry.
Helper: nursery, gardener, green house

Industry (stone, glass, and clay products) Fishery


Helper: glass production, brick yard, drain-tile-pile, Hand: fishing, hatchery Helper: fishing boats
pottery, cement block, quarry

Industry (food products) Miscellaneous


Helper: poultry, slaughter house, frozen foods, cannery, Delivery man
bake shop, sweets factory, dairy products Helper: All vehicles, warehouse

Persons with mental retardation have been trained and employed as listed above, by many non-
governmental organizations.

Non-Governmental Organizations –Job • Carpentry


Training and Placements • Horticulture (Nursery Maintenance,
The valuable experience gained by Kitchen Garden, Potted Plants).
organizations such as those mentioned below can • Offset Press, Letter Press, Book-
be of value for the new entrants: Binding, Xerox, Cyclostyling.
Thakur Hari Prasad Institute of • Tailoring, Needle Work, Jute Bag
Rehabilitation & Research for the Mentally Making, Knitting.
Retarded, Hyderabad; Sweekar Rehabilitation • Fabric Hand Painting, Tie and Dye,
Institute for Handicapped, Secunderabad; Swyam Block Printing, Candle Making, Bangle
Krushi, Hyderabad; Amar Jyothi Institute of Making.
Delhi; Vivekananda Udyogalaya; Mrs. Vakil’s Sewri
• Brick Making, Weaving, Screen Printing.
School, Children’s Aid Society, Dilkhush Home,
Malad Special School all in Mumbai; Prabhodini • Christmas and New Year Cards.
Trust School at Nashik; Pope Paul Mercy Home, • Bakery, Catering, Commercial-
Trissur; Blind People’s Association, Ahmedabad; Cooking, ‘Masala’ (Spices) processing.
Navjyothi Trust Chennai; PNR Society, • Home Management.
Bhavnagar; RAAS, Tirupathi. These organisations
• Consumer Stores.
provide the centre-based training in the following
• Assembly Line Production.
vocations:
• Sub-contract jobs for Airlines.

304
Aims of Vocational Rehabilitation The Ninth Five Year Plan period had
Professionals have a major role to play in witnessed the establishment of new VRCs and a
achieving vocational rehabilitation, in suitably network of three Rural Rehabilitation Centres for
integrating persons with disabilities in jobs and in each VRC.
fostering their potential in independent living, in The Government envisages for a linkage
economic, personal, social and occupational between the Government and the Voluntary
spheres. Agencies involved in tertiary education and
It should also be possible to network with transition to work of youth with disabilities.
existing polytechnic institutes so that they ‘include’
persons with mental retardation in a special
Pattern of Job Distribution
category for training purposes with the curriculum There is a large concentration of services in
including courses so that they fit into jobs having the urban areas. Because of the types of jobs
the required skills. available in the communities where they live and
are well absorbed, persons with mental retardation
Recognizing the importance of systematic, in the rural areas are not under severe stress to
structured and need based training programs perform beyond their capabilities, and their
suitable for employment, the Rehabilitation expectations are realistic in the natural
Council of India has revised appropriately and put environment.
into use its staff training program at all training
centres. Since the schemes reach out to a very small
proportion of young persons with mental
Initiatives of the Ministry of Labour, retardation, most of them depend on their families
Govt. of India financially. Some are helpful in sharing the
Under the Ministry of Labour, in the 17 household chores or work in small measures
VRCs, the Special Vocational Training and contributing indirectly to the efficiency,
Rehabilitation Centers, apart from training, based productivity and economic status of the families.
on capability, with an IQ of 50 and above, in specific Large number of young persons with severe
trades, the VRCs helps in job search and job disabling conditions resort to charity or idle
placement of young through their placement wing. existence.
The Ministry of Labour also supports job-
seekers with disabilities by identifying jobs for
The Persons with Disabilities (Equal
them through enrolment in the 47 Special
Opportunities, Protection of Rights and
Full Participation) Act, 1995
Employment Exchanges.
The Act does not provide any mandatory
In addition, the 914 regular employment provision of job reservations for persons with
exchanges also cater to the employment needs of mental retardation.
job-seekers with disabilities.
There is no evidence to say that the persons
Around 70,000 job seekers have availed the with mild mental retardation have been provided
services of Special Employment Exchange for their with the jobs identified by the Government of India
job placement. for them.

305
The Government has set up Core receive education in the mainstream
Committees for framing guidelines for inter- school system. Various allowances and
agency and inter-Ministerial collaboration for annual cost of the equipments are
effective implementation of the comprehensive provided under this scheme.
legislation. • A government servant is eligible to draw
Children’s Educational Allowance when
Legal Rights and Other Provisions
he/she is compelled to send his/her child
• The State legislatures are empowered to with mental retardation to a school away
pass legislation regarding relief for the from the station of his/her posting.
persons with disabilities and those
• Assistance is given to persons with
unemployable as per Entry 9 of the State
disability for purchase and fitting of aids
List of the Constitution.
and appliances by the Government of
• Special provisions such as job quota and India.
reservation of particular jobs for the
• Most housing boards and urban
persons with disabilities exist.
development authorities have schemes
Concessions and Benefits for Persons with of preferential allotment of plots and
Mental Retardation housing sites to individuals with
• Seventy five percent concession in the disability.
basic train fare in the first and second • The Government of India, Department
class is allowed to persons with mental of Personnel and Training vide O.M.
retardation accompanied by an escort No. AB-1401/ 4190-Estt (R) dated 15th
and to persons in groups. February, 1991, makes provision for a
• Most of the State Governments having choice in the place of posting of parents
their own operated transport in government service having a child
undertakings or corporations allow with mental retardation.
subsidized/free bus travel in the city and
Assistance to Voluntary Organizations for
rural routes including an escort.
the Persons with Disabilities
• Preferential allotment of telephone
• Assistance of upto 90 percent in urban
booths. and rural areas is given to NGOs for
• A scheme of scholarships by the education, training and rehabilitation of
erstwhile Union Ministry of Welfare persons with disabilities.
since 1955 awarded to persons with • Emphasis is laid on Vocational Guidance
disability for pursuing education in and Training.
special schools being run by non-
government organizations operated Assistance to Voluntary Organizations for
through the State Governments and Manpower Development in the Field of
Union Territories. Cerebral Palsy and Mental Retardation
• Persons with mental retardation can • In the case of cerebral palsy and mental

306
retardation, 100% assistance is provided Conclusion
to voluntary organizations for training • In India, no unemployment allowance/
professionals and for developing social security or any other security
organizational infrastructure such as benefits are available to persons with
class room, library/hostel, etc. disabilities/caregivers, youngsters with
disabilities may take up any job offered.
Employment in Private Sector
• With greater awareness young people
Private sector organizations have to reserve
with disabilities can take the available
jobs for persons with disabilities as per the state
semi-skilled and unskilled jobs.
government orders and provisions in the PWD
Act. • Results of the initial experiments
pertaining to on-the-job training and
Violation of Employment Provisions supported integrated employment have
As per section 63 of the PWD Act, the Chief been encouraging. Cost-effectiveness,
Commissioner for the Disabled or the State promotion of dignity and improvement
Commissioner for the Disabled has the same in quality of life through integrated
powers as are vested in a court under the Criminal work, have brought in greater advocacy
Procedure Code, 1908. for this approach.
• Special Employment Exchanges and
Economic Rehabilitation Special Employment Cells have been
Many persons with disabilities have benefited established by the Ministry of Labour to
under this scheme wherein Rs. 3,000 is given as support persons with disabilities in job-
subsidy linked with bank loan to start petty search and placement.
business. • National Awards instituted recognize
contribution to the rehabilitation
Each State has its own economic
processes of employees with disabilities,
rehabilitation program such as setting up telephone
placement officers and successful
booths, awarding unemployment allowance,
employers of persons with disabilities.
providing employment in the unorganized sector
and in networking with NGOs. These programs
are typical for each State according to the needs
and priorities.

307
Chapter 13

Research and Development in the Field of


Mental Retardation in India

Introduction Research in India

T he first review of research in mental


retardation in India appeared only in 1968
(Das, 1968).
The present section on Research and
Development in India is discussed below under
different categories.

Review of Literature Curriculum and Instruction


• The Study on the ‘Feasibility of Training Curriculum and instructional procedure for
Mothers at Day Care Centres for persons with mental retardation has received little
Children with Mental Retardation-Age attention except in the
Group 3 to 6 years (1968 to 1971), a • Preparation of skill development
controlled study. material at NIMH, Secunderabad.
• Between 1968 and 1976, there were fifty • Diagnostic curriculum at Amar Jyoti
experimental research publications by Trust, New Delhi (Malhotra, 2001).
Indian psychologists in the field of
• Yogasanas for Persons with Mental
mental retardation, with the maximum
Retardation, Madras (Jeychandran,
number (about 25%) in the year 1968.
1983).
• The first Indian Journal in the field of
• Upanayan Early Intervention
Mental Retardation. The Occupational
Programme System (1987).
Therapy Journal, now called The Journal of
The NCERT has not developed source
Rehabilitation in Asia appeared in 1960
books for mental retardation.
from Mumbai.
• Another research Journal, The Indian The serial learning procedure followed by
Journal on Mental Retardation, published Goel (1980) was not clear on the concept of serial
by the All India Association on Mental learning.
Retardation, Chandigarh, appeared in The effect of isolation on learning and
1968. memory was undertaken by Goel and Panda
• A popular Journal Mental Retardation (1998); it led to conflicting findings.
Digest is being published by the There is need for curriculum research in
Federation for the Welfare of the arithmetic, reading, language, social skills and
Mentally Retarded, New Delhi since determination of efficiency of instructional
1970. techniques.

308
Research literature is conspicuously absent compared with adult and no-model conditions for
in this regard. both groups of children.
• In demonstrating home based training
Learning and Memory
in learning, Narayan and Ajit (1991) and
Long-term retention correlates with learning Kohli (1988) found that parental
and memory in persons with retardation. The more involvement and support reinforced
intense and longer the learning, the better is the school effort.
long-term retention and also easier the transfer of
training. Mainstream children did better than those Assessment and Needs to be Met
with mental retardation of the same age in all Assessment of mental retardation in India
situations. Distractibility and attention deficits are poses serious problems because of lack of unified
pronounced in persons with mental retardation, procedure, culture appropriateness, and
but the isolation effect depends on the nature of comprehensiveness.
the isolated items.
Need
Behavior Modification Approach in Learning The dual purpose of assessment refer to
Jeyachandran, et al. (1968) developed the knowing where the child is and identifying where
Madras Scale and used the behavior modification he should be taken.
approach to train children under 6 years with The norm referenced test, such as the
mental retardation. Also using behavior intelligence test, is not suitable for instruction
modification approach, Lidhoo, M.L., and Dhar, purposes.
L. (1989) designed teaching and learning
Research in the field of mental retardation
methodologies for educable children. They
with developmental approach will not provide
reported improved achievement in adaptive
significant conclusions.
behaviours.
In the absence of growth studies, there is a
Jeyachandran and Vimala (1970) developed
need for behavioral assessment in the field of
the Adaptive Behavior Assessment Kit (ABAK) for
applied behavior analysis, behavior modification
assessment and training of persons with mental
and behavior therapy.
retardation.
Research should be change-oriented and
Peer Modeling criterion referenced.
Comparing effectiveness of adult and peer There is need for research on precision
models on learning and retention of performance teaching and formative assessment which should
skills in children with mental retardation, using a predict future learning and growth.
learning kit for teaching the skills developed for
educable mentally retarded (EMR) and trainable Assessment Scale
mentally retarded (TMR) children, Narayan Development of assessment instrument
(1990) found peer modeling to be the most already developed by NIMH (1991) needs to be
effective technique for learning performance skills translated for different regions for identification,
in motor, perceptual and communication areas as placement and intervention (Panda, 1994).

309
Language Development other inputs for making a meaningful assessment
Nizamie (2001) stated that some children of the person’s social behavior, development and
may have severe retardation in their language performance ratings, etc.
development, but may have only mild or moderate In this direction, some useful work has
retardation in the area of self-care or visio-spatial already been done by eminent personalities such
skills. as Bondy in Germany, Schopier, Reichler and
It is important to know, on a scale which is Demeyer in USA and more recently by Luria and
yet to be devised, the pattern of strengths, Nebraska of Europe. Yet, there is lack of
weaknesses and performances of such children standardization.
corresponding to their treatment and growth. Research aimed at developing a battery of
Certain patterns of performance have been tests which suits Indian conditions needs to be
associated more with a particular type of mental undertaken.
retardation.
Inferior visio-constructive performance in Available Tests in India
comparison to verbal abilities in Turners Panda (2001) critically analyzing the content
Syndrome, a comparatively poor visual motor and psychometric properties of available tests on
integration than simple motor skills and general mental retardation emphasized the need for
language skills in William Syndrome, and right diagnostic and predictive aspects of assessment of
hemisphere dominance for language in Down’s intellectually challenged learners in India.
syndrome have been reported.
The analysis addressed available:
These results suggest the importance of
Norm-referenced assessment techniques
evaluation and treatment by a multidisciplinary
(intelligence, developmental schedules).
team.
Criterion referenced assessment.
Limitations to Intelligence Tests Curriculum-based assessment which traces
Available intelligences tests are not applicable the child’s assessment, the Early Learning
to a large section of children with mental Accomplishment Profile (ELAP).
retardation for reasons that they are devised Upanayan Early Intervention Programming
without including such children in their normative System.
samples; they are constructed only to recognize
Portage Guide to Early Education.
differences within the normal intelligence range
and their insensitivity to variations at low extremes. Individualised Education Plan (IEP).
Hence, if a child’s score is below the expected Integrating and Interdisciplinary Team
range, his IQ has to be calculated by extrapolation. assessment, training objectives, monitoring
Any qualified psychologist will give an authentic and program impact; adaptive to challenged
report on the psychological tests administered. assessment (social competence); behavioral
assessment tests (Basic - MR and Functional
A Meaningful Assessment assessment); Developmental Indices
It is important in such cases to rely upon (MDPS).

310
Tests in India in identifying, screening, This guide encompasses assessment for the
assessing, capabilities and evaluating intellectually capability, pace, limits, and the inputs of learners.
challenged learners include process-oriented A mechanism for development of such a
measures, neuropsychological assessment and device is now available and in use.
Malhotra’s Curriculum Based Assessment.
However, the test - Planning, Attention, Ecology: School and Family
Simultaneous and Successive Processing (PASS) Research on disability and particularly on
though very useful has not been popularized in persons with mental retardation on acceptability
India for its usage. in rural versus urban community have not been
undertaken so far.
While analyzing the reliance and validity of
such measures used, the shortcomings, Socio-psychological survey to determine the
inadequacies, built-in constraints which reduce the rural versus urban attitudes towards acceptance of
usefulness of the tests for use in culturally diverse individuals with mental retardation in the
Indian context have been stated. community is an indicator for the directions in
rehabilitation.
Emerging issues and developments in
diagnosis, assessment, and evaluation of persons Most of the research on socially deprived
with mental retardation and programming for them children with low intelligence is attributed to poor
has been viewed in the background of equal social class and poverty. Area specific prevalence is
yet to be undertaken.
opportunity, inclusion, and remediation.
A gross limitation of these studies is in its
These requirements are found satisfied by
methodology, but the ideas are pragmatic for other
the indigenously developed test protocols –The
researchers to undertake further studies.
Madras Development Programming System, the
Upanayan Early Intervention Programming
Management and Family Studies
System and the Functional Assessment Check List.
A pioneering study on the feasibility of
Panda (2001) suggested developing a child- training mothers of children with mental
centered curriculum guide and a Learning retardation, age group, 3 to 6 years, in day care
Assessment Potential Device (LPAD): settings was done in 1968 by Bala Vihar Residential
School, Chennai funded by PL480-US Grant.
• to provide continuity and a
comprehensive approach for functional Five Groups were taken for the study were:
and behavioral assessment;
Group A – parent participation-6 months
• for giving remedial inputs based on
Group B – parent participation- 12 months
clinical diagnosis in the areas of
socialization, language, cognition, motor, Group C - without parent participation -18
months
interpersonal relationship, all of which
are directed towards independent Group D - children in institutions
functioning by persons with mental Group E - children with no training, no
retardation throughout the country. parent participation

311
The findings were: appropriate social behaviors (Sen, 1976).
• Given the training the parents become
the carryover agents of their children at Service Delivery System
home; Different service delivery systems are in use
• positive attitudinal change was observed for the education and rehabilitation of the children
towards their children with mental with mental retardation.
retardation within a period of 6 months, Research on the beneficial effects of
and integrated and inclusive education systems showed
• the longer the training, the more significant interaction between children with and
sustained is the learning in the children. without mental retardation (Mani 1994;
In recent years an increasing magnitude of Jeyachandran, 1999).
research in social sciences has focused on issues
The Integrated Child Development Scheme
relating to mental retardation.
(ICDS) workers facilitated the service delivery
The rationale is, mental retardation is not system. NGOs involvement was inadequate.
only a product of physiological or pathological
All project officers and teachers
causes, but is also the result of familial, socio-
recommended the composite area approach for
economic, environmental, and many other factors.
integrated education.
Hence, family ecological investigation in
Sociological labeling was observed in the
mental retardation has become necessity.
attitudes of teachers, community members and
parents, towards children with mental retardation.
Self Injurious Behavior (SIB)
Self injurious behavior requires immediate In the Indian context, now children with
and intensive intervention for persons with mental mental retardation learn in integrated and inclusive
retardation and related developmental disorders. settings with normal peers helping, parental
attitudes change favorably; partnership between
Correlation of SIB with the degree of mental government and voluntary organization work
retardation shows a prevalence of 10-15 per cent (RCI, 2005).
among persons with severe mental retardation.
Associated with aggressive and abusive Bio-Technology/Bio-Medical Research
behavior towards family members and caregivers, In mental retardation, genetic factor is the
this condition leads to infliction of significant harm cause in nearly 10% of the cases. Another important
to oneself the physical, emotional, and financial etiological factor is chromosomal abnormality.
impact being considerable.
Visible progress has been made in
Children with mental retardation have more understanding the genetic basis for the occurrence
adjustment problems with their peers than the of severe to profound mental retardation.
mainstream adolescent children.
The National Centre for Biological Sciences,
Social feedback reduces the adjustment Bangalore; All India Institute of Medical Sciences,
problems for them and teaches a variety of Delhi; University of Delhi; National Institute of

312
Mental Health and Neurological Sciences, Down Syndrome, Fragile X Syndrome and other
Banagalore; University of Madras, Chennai; Sri chromosomal and syndromes.
Ramachandra Medical College and Research,
• The possible role of these factors, if any,
Chennai; Tata Institute for Fundamental Research,
in the causation are known now. The
Mumbai; Madurai Kamaraj University, Madurai;
rarer aberrations and their clinical
Manovikas Kendra Rehabilitation and Research
correlation have implications for future
Institute of the Handicapped, Kolkata are some of
research.
the leading institutes involved in genetic research
There are a few biotechnological and
on the various aspects of mental retardation.
biomedical research studies in addition to what has
It was reported at the Second International been done in cases with phenylketenuria (PKU )
Conference on Early Intervention for Mental by Krupanidhi and Punekar (1963, 1966) and in
Retardation at Chennai in 2007 that a breakthrough those with nutritional deficiency and cognitive
has been made in the laboratories engaged in development (Dutta, T.).
studies in biological sciences— the National Centre
Bio-chemical screening of children after
for Biological Sciences, Bangalore, and the Mind
birth and special diet schedules would go a long
Institute, California, USA.
way in reducing the occurrence of mental
Mental retardation with associated physical retardation in India.
and behavioral conditions occurs due to both
genetic and environmental causes (Singh, 2001). Intervention Research
However the genetic changes which occur in a large Anita Ghai and Anima Sen (1992) studied
number of specific disorders have not yet been the choice behavior of persons with high and low
identified. mental retardation using different games and
Multifactorial inheritance reflects the different forms of recreational acts as means of
additive effects of several minor genetic educating the children with retardation.
abnormalities and minor environmental factors. The results are analysed in terms of
With the availability of the complete DNA cooperative and competitive stance utilized by the
sequence of the human genetic material, it will be children with mental retardation and are discussed
possible to identify deviant genes in affected in relation to their implications for training and
individuals in the near future. educating the persons with mental retardation.
The Madras Project (1968), an experimental
Mind’s College of Special Education, Mumbai study on the feasibility of involving parents in
Chromosomal analysis was carried out in training their children with mental retardation
2,002 subjects over a period of 13 years. Parents indicated an attitudinal change in a shorter time
and siblings of positive cases were also included. and the parents as being effective as carryover
agents.
Various epidemiological factors such as
parental ages, consanguinity, level of intellectual The Upanayan Early Intervention (1987), after
functioning, family history, dysmorphic features elaborate field tests, its modules were found
have been analyzed under various groups, e.g., workable and suitable in its applications.

313
Parikh (1992) reported on Infant Stimulation handicapped persons live together in a community
Programs for children with mental retardation and under supervision and get trained effectively.
with parental involvement for those unable to The initial supervision provided by an in-
benefit from mainstream education. Activities and house parent gradually fades into a manager system
content material beyond the range of the regular wherein one person co-ordinates the Care Staff
curriculum offered in the schools to encompass personnel in shifts. A feeling of participation is
life skills and functional skills have to be provided. encouraged while managing all the household
Pati, Kumar, and Mohanty (1997) explored chores. Thus, social and educational training, and
the effectiveness of a package program consisting learning to use money through actual transactions
of sitting at the left hand side of the subject, verbal has fostered a high degree of independence
instruction (attend your task), and secondary successfully.
reward, on the task attention of the persons with Krupa, a residential home for adult persons
severe mental retardation, in a class room setting. with mental retardation and associated disabilities
Significant improvement was seen in the behavior was established in 1999 at Sriperumbudur under
of all subjects with a relapse after withdrawal of the auspices of the Dayananda- B.D.Goenka Trust.
the intervention package.
A community based small group home, the
curriculum at Krupa follows a Gurukulam pattern
Other Recent Empirical Studies
with less stress, yet following, an individualized
A significant improvement in self help skills program in the care and management of the
in the children, an increased awareness among the residents.
community and school teachers on the importance
of training and a positive attitude were the Swayamkrushi
outcomes of a CBR program on children with The main aim was to provide training
mental retardation, their families and community through actual experiences of operating in a social
(R. Madhumathi, 2005). zone, in commercial centres, at social functions and
Sharma ( 2007) showed improvement in the in other group activities like self-organized picnics
and other leisure time activities.
frequency of attacks and in general health,
following augmentative therapies—pranic healing. Along with hygiene, training on household
chores has confirmed success of this program
Subhodh Kumar (2007) found that using
(Kalyan, 1992).
appropriate behavior modification techniques,
problem behaviors can be changed/eliminated and This system is one of the pioneering efforts
those in inclusive settings are less problematic. in India.

Intervention research studies are, however, There are eight girls between the age group
limited. of 16 to 21 years who have been integrated into
society successfully.
The Group Home Experiment A powerful review mechanism has been in-
In group homes, there are living built into the program. The methodology adopted
arrangements where a small number of mentally is as follows:

314
• The house teachers meet once in three Central Institue for the Mentally Handicapped,
days with the ongoing evaluations. Tiruvananthapuram; Mrs J.Vakil School, Sewri,
• These progress reports are reviewed by Mumbai; Hari Mohan Singh Home in Dist.
the director in a combined performance Burdwan, West Bengal; Amar Seva Sangham,
review meeting with all the staff. Ayyakudi, Tamil Nadu; CSI Home for the
Mentally Retarded, Sakshiyapuram, Siva Kasi,
• Necessary amendments/changes in the
Tamil Nadu; Asha, Bangalore, Karnataka.
training program are made and executed
with advice from other specialists when
Development of Instructional Materials
needed.
• A Guide Book for Teaching Yoga for
• Most important is sending the individual
Persons with Mental Retardation (1983)
back to his/her residential environment
developed for the use of special
for a short period during which the
educators, can be used by any one
parent is guided and counseled about
interested in teaching yoga for persons
home training and on the points on
with mental retardation.
which he should report back.
• Research and development activities
• On account of reports of enormous
have taken rapid strides after the NPE
improvements, parents of individuals
1986 came into force and the
with mental retardation approached the
establishment of the National Institute
organizers to start more such group
for the Mentally Handicapped at
homes in different locations in the cities.
Secunderabad.
• The complex of ten units are located in
Similarly, non-governmental organizations
residential colonies, near shopping units
(NGOs) like Thakur Hari Prasad Institute (THPI)
or small commercial centres where
Hyderabad; Amarjyoti, Delhi; Vijay Human
‘small’ employment opportunities and
Services, Chennai; Mano Vikas Research Institute
“on the job” training are conveniently
for Handicapped (MRIH), Kolkata have also
available, areas which are well connected
brought out innovative booklets for the benefit of
by bus routes.
persons with mental retardation.
It can be concluded that such programs are
most essential in the rehabilitation of the adults These documents taken together represent
with mental retardation. significant contribution as well as wide range of
activities relating to early intervention, skill
A few outstanding examples of Group development, instruction, employment and
Homes run in the above manner are: Thakur Hari mainstreaming.
Prasad Institute, Hyderabad; Sweekar, Hyderabad;

315
Chapter 14

Current and Emerging Issues

Introduction to the Proclamation on the Full Participation

W ith more awareness on the need for efficient and Equality of People with Disabilities in the
care and management systems in early Asian and Pacific Decade of Disabled Persons,
intervention, school education, vocational training, 1993 -2002.
employability and independent living, parents have In January 1996 an Act of Parliament
been demanding for more satisfactory need-based enabling implementation of this Proclamation was
services in their areas. passed –The Persons with Disabilities (Equal
With legislation in place, it has now become Opportunities, Protection of Rights and Full
mandatory to provide an array of appropriate Participation) Act, 1995.
services as a matter of right, to persons with mental Two other legislations, the Rehabilitation
retardation. Council of India Act, 1992 and the National Trust
Act, 1999 have included training and guardianship
Empowerment respectively in their clauses.
The Rights Based Approach with Result Oriented
Looking Ahead
Support Systems
In the provision of services to persons with
A rights based approach is based on
mental retardation, the main concern is, where we
empowerment, equality of entitlement, dignity,
have been, where we are today, and where we will be in
justice, and respect by all people.
the future.
It encourages persons with disabilities, their
According to Cain and Taber (1987) three
parents/caregivers to demand quality service,
elements are of importance in defining the
according to their priorities, thereby raising their
relationship with the past and that of the present
self-esteem and promoting autonomy. It implies
and the future. They are:
that society becomes obligated to enable people to
enjoy their rights, but with mechanisms which • Continuity where the future is always
would redress any grievance when quality services influenced by the past and the present.
are not given. • Change where the future is always
influenced by the unexpected events that
Legislation break the continuity of history.
The Persons with Disabilities Act, 1995 • Choice where the future is always
India was the first country to be a signatory influenced by the choices that people

316
make when confronted with a new training, directing, motivating and supervising the
development. right personnel to be part of organizations.
Changes and influences of the society also Academia are doubly responsible in this task
affect the relationship between the present and the of considering every aspect of the services, not only
future. in the framing the policy for the welfare of the
Pressures on persons with mental retardation persons with mental retardation, but also in its
vary significantly according to the demands of the implementation that it blends well with the
society. The future trend, therefore, projects an national ethos.
everyday life which will become more demanding Networking with the departments of health,
and technologically more sophisticated. education, human resource development and
The impact of this trend will be felt on the employment, interacting with the players in the
nature of work which will become more field towards a smooth spread of services as well as
technological, more automated, with more jobs in the continued quality maintenance will have to
being made available in the service industry. be the vision of the service providers.

Persons with mental retardation may live Current and Emerging Issues
longer consequently requiring a continuum of Application of technology in the array of
health services. services provided to the persons with disabilities
In planning from their childhood to has to suit the persons in the settings they live in,
adulthood, there is a need for the provision of a whether rural or urban making their lives more
result-oriented array of services ranging from early comfortable, more productive and more self
intervention to life as an adult. enhancing.

The Array of Services Technology in the Digital Age


A convergence of the interdisciplinary team The benefits of technology-based socio-
of experts in assisting the parent and the family economic progress had invariably got unevenly
members of the child with disability for inclusion distributed in society, resulting in widening the
in the mainstream to ensure quality life to persons divide between the haves and the have-nots.
with disability has been brought about. In the digital age, the key to the information
society is universal access, with all having equal
A Holistic Approach opportunities to participate and no one being
The array of services available in the country is denied of any benefit from the available technology,
exhaustive, encompassing all facets of education, particularly the persons with disability.
medical, and social needs, required for a holistic
The Conference on ‘Information
approach to the habilitation and rehabilitation of
Technology Enablers for Persons with
persons with mental retardation, keeping in mind
Disability’(INTEND-2001)
the person as a whole.
The Conference on ‘Information
Much thought has to be given to human
Technology Enablers for Persons with Disability’
services departments in selecting, screening,

317
(Intend-2001) conducted at national level, at assistive technology service means any service that
Chennai, by IT Technologists, was an effort to helps an individual with a disability select, acquire,
‘have a fresh look at new possibilities and or use an assistive technology device (Assistive
promises of Science and Technology, more Technology Act of 2004).
specially, the dominant Information Technology of
today. Since then, there has been a sea change in Technology for the Benefit of People with Mental
the development of technology for enabling Retardation and Associated Disabilities
persons with disabilities, but it is yet to reach the Kelker (1997) developed the following list
masses in ways, affordable and accessible. indicating that assistive technology may be
The basic question asked at the Conference considered appropriate when it does any or all of
‘How can technology be made more human and the following things:
humane?’ still remains to be answered more • Enables an individual to perform
expansively. functions that can be achieved by no
The focus of the World Telecommunication other means.
and Information Society Day (May 17) is therefore • Enables an individual to approximate
on ‘Equal Opportunities and Participation in the normal fluency, rate, or standards – a
Digital Age for Persons with Disabilities. level of accomplishment that could not
be achieved by any other means.
Developments–2001 to 2008 • Provides access for participation in
The developments that have taken place in programs or activities which otherwise
the past decade in the area of Information would be closed to the individual.
Communication Technology have enabled a • Increases endurance or ability to
section of the population of persons with persevere and complete tasks that
disabilities to lead a more enriched life than before. otherwise are too laborious to be
attempted on a routine basis.
Today, electronic banking, online shopping,
e-mailing, electronic document processing, and • Enables an individual to concentrate on
other computer-related resources and tasks—learning/employment, rather
than mechanical tasks.
communication products are available for persons
with disabilities, again only to a section of the • Provides greater access to information.
population. Soon, technological facilities should • Supports normal social interactions with
reach out to persons with mental retardation as well. peers and adults.
• Supports participation in the least
Technology for People with Mental Retardation and restrictive educational environment.
Associated Disabilities
Assistive Technology (AT) can be a device or a Use of Technology for Persons with Mental
service. An assistive technology device is any item, Retardation
piece of equipment, or product system, that is used • Communication
to increase, maintain, or improve functional Augmentative and Alternative
capabilities of individuals with disabilities. An Communication (AAC) ranges from low-tech

318
message boards to computerized voice output educational system to aid communication, support
communication aids and synthesized speech activities of daily living and to enhance learning.
for those who cannot use vocal Computer-assisted instruction can help in many
communication. areas, including word recognition, mathematics,
• Mobility spelling and even social skills. Computers have also
been found to promote interaction with non-
Simple to sophisticated computer controlled
disabled peers.
wheelchairs and mobility aids help in
direction-finding and guiding users to Staff training and service providing
destinations. Computer cueing systems and organizations are enabled, both in government or
robots have also been used to guide users with non-government sectors, to develop programs
intellectual disabilities. beginning from early detection/intervention to
• Environmental control adult independent living by means of audio-visual
Assistive technology can help people to presentations, education satellite communication
control electrical appliances, audio/video network, available freely and in local languages.
equipment such as home entertainment Distance mode education programs have also been
systems or to do something as basic as lock made accessible through this communication
and unlock doors. system.

• Activities of daily living The distance mode of education provided by


Technology is assisting people with disabilities Indira Gandhi National Open University
to successfully complete everyday tasks of self- (IGNOU), the Rehabilitation Council of India
care. Examples: automated and computerized with M.P. Bhoj Open University, Centre for
dining devices allow an individual to eat more Advanced Computing (C-DAC) provide quality
independently. educational material in all the local languages, a
commendable national initiative.
• Audio prompting devices may be used to assist
a person with memory difficulties to complete Technology is available in local languages,
a task or to follow a certain sequence of steps though not yet, at low cost or no cost. Based on
from start to finish. the socio-economic need and the affordability of
• Video-based instructional materials can help the persons with disability, many more products
people learn functional life skills such as of utility in the public domain need to be made
grocery shopping, writing a cheque, paying available on large scale.
the bills or using the ATM machine.
The Education Satellite: EDUSAT
Enabler and Communications Technology–
Technology in Extending the Reach The Education Satellite: EDUSAT,
of Education organized and implemented by the RCI has been
funded by Media Lab Asia which is under the
Technology for Education Ministry of Information and Technology.
Today methodologies, specific to each type The IGNOU, the RCI and the Sarva Sishka
and degree of disability have been developed/made Abhyan established satellite education programs
available as part and parcel of an integrated which have imparted training to the professionals,

319
persons with mental retardation and their parents. cognitive and eye-hand coordination skills.
The non-availability of master trainers has been Specially designed software can help people with
solved to some extent with introduction of this intellectual disabilities access the World Wide Web.
mode of special education. Exercise and physical fitness can be supported by
Computers with web cameras, computers on video-based technology.
networks have given easy access to tele-
Technology and Medical Services
consultation services for intervention programs,
though it is yet to become more popular all over Advances in biomedical technology are
the country. already revolutionizing services to persons with
mental retardation.
Technology for Employment The Human Genome Project is a
Video-assisted training is being used for job concentrated, multinational effort to identify the
training and job skill development and to teach location and function of all parts of the human
complex skills for appropriate job behavior and genetic code.
social interaction. Prompting systems using audio
Of the approximately 4,434 genetic disorders
cassette recorders and computer-based prompting
that affect people, mental retardation is believed
devices have been used to help workers stay on
to be a prominent feature in 448(10%) (Moser,
task, the latter, computerized prompting systems,
1992).
helping people manage their time in scheduling
job activities. Medical research in brain functions,
including neural network simulations, genetics and
Innovations in designs and manufacturing
genetic engineering are being carried out at national
processes are under the constraints of copyright
research institutions.
and patent law in respect of products for the
persons with disabilities and they are not therefore Suited to the Indian context, research, design
easily available or affordable. and development of affordable assistive and
augmentative devices need to be undertaken such
These innovations will enhance the quality
as the Hawking Communicator or the Computer.
of life of the person with disability both at home
and place of work in the type of job to be performed Barriers to Technology Used by Persons
at every ‘reserved’ employment facility for the with Mental Retardation
persons with disabilities. Greater efficiency will be
The ARC in a survey (Wehmeyer, 1998)
ensured in the performance of the job and therefore
found that the main barriers regarding the devices
there will be increased productivity.
were lack of information on the availability and
assessment, cost, complexity of the devices, and
Technology for Sports and Recreation
limited training in their use.
Toys can be adapted with switches and other
technologies to facilitate play for children. Even though it is the goal of most technology
Computer or video games provide age-appropriate development efforts to incorporate the principles
social opportunities and help children learn of universal design, cognitive access is not carefully
considered.

320
Universal design ensures that the technology • Kerb-cuts and wheel chair usable roads
may be used by all people without the need for and pavements are yet to be facilitated.
adaptation or specialized design. • Not all public buildings are disabled-
An example of cognitive access would be if friendly.
someone with disabilities is using a computer Provision of ramps, wide doorways,
program, on-screen messages should last long avoidance of split levels, provision of Braille
enough or provide wait time to consider whether signboards, toilet facilities, special locking and
to press a computer key. unlocking systems, are not prioritized or made
The time between dialing and pressing the mandatory.
numerals should be sufficient to complete a phone Only in specific situations and only as a result
call using a rechargeable phone card as payment. of litigations the transportation and conveyance—
However, individuals with intellectual disabilities bus, rail and air has been made accessible to persons
having a range of learning and processing abilities, with disabilities.
it is difficult to develop assistive technology
solutions that are universal. Possibilities of building wireless signals into
lamp posts, signal posts which could provide
Coordinated Efforts–Governmental and positional, locational and directional
Non-Governmental Organizations information to road and pavement users through
In view of the vast multiplicity of agencies personal devices that incorporate navigational
that would inevitably be involved in the facilities are yet to make a beginning.
implementation of the technology benefits to the
Providing Needed Assistive Technology to
persons with mental retardation, a coordinated and
Persons with Mental Retardation
sustained effort is needed by both the governmental
and non-governmental organizations. With legislation in place, it is recognized that
persons with mental retardation need technology
A barrier-free environment is yet to be made to be able to learn. Therefore, the school
available at all public places for persons with mental
authorities, should, in the near future
retardation and associated disabilities and
locomotor disabilities. • Evaluate, acquire and coordinate the
necessary technology with other
• Facilities for comfortable travel even for
therapies and interventions.
short distances and for transporting the
wheel chair are also not commonly • Provide training for the individual, his
available. family, and the school staff in the
effective use of the technology.
• Wheelchair usage, relating to postural
stresses, call for sustained research, In addition, if the person’s individualized
development and design activities. education program specifies that Assistive
Technology is needed for home use, the school
• Demand for walkers, motorized or self-
must own and provide the device until he moves
propelled, may increase for use by
to another school.
persons with disabilities and the aged.

321
Research on Computers in Special Challenges
Education Needed Research on computer based education may
Some areas identified also differ from the traditional research in
education or in computer science which needs to
• The effect of the level of cognitive
be considered in evaluating research in a new area.
development in children on the
understanding of working with the Currently, the use of technology is associated
computers. with therapy and in education as aids for persons
• The most appropriate age, and the best with mental retardation which will become wider
way to introduce computers into the in scope and more encompassing in its dimensions.
educational process and the Technology will be increasingly applied in
programming languages to be taught. the manufacture and use of assistive devices in
• The preference of one particular subject enhancing the person’s cognitive skills, and in
over the other for integrating computer facilitating independent living through the
based learning into the curriculum. management of adaptive behavior.
• The most appropriate uses for computer
graphics in the educational process. Conclusion
• Developing new and better computer Technological advances in general education
enriched instruction materials. and more so in special education is of recent
occurrence.
• The impact of computer interactions on
student’s learning skills (i.e., effect on The Department of Education launched a
the learners attention span, his/her ability pilot project on computer literacy in 1985 in a
to learn independently, etc.), its impact number of regular schools. Presently in a number
on a child’s natural language of States, regular school education includes
development and socialization. computer literacy as part of curriculum (Dutta,
• Computers as a means of instruction (an 1986).
electronic tutor), and end of instruction Word processor programs in Indian
(as in computer literacy), and, as a languages have been developed for wider reach.
personal productivity tool to help
Production of adapted peripherals and
students produce traditional written
add-on devices with indigenously developed
materials more efficiently.
software are rapidly increasing to suit the need of
the persons with disabilities.

Experts who contributed to the section on Mental Retardation


Prof. P. Jeyachandran (Editor)
Mr. J. P. Gadkari
Dr. S. K. Mishra

322
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