MENTALRETARDATION

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Introduction

Identification of persons with mental retardation and affording them care and management for

their disabilities is not a new concept in India. Theconcept had been translated into practice overseveral centuries as a community participativeculture.

The status of disability in India, particularlyin the provision of education and employment forpersons with mental retardation, as a matter of needand above all, as a matter of right, has had itsrecognition only in recent times, almost after theenactment of the Persons with Disabilities Act(PWD), 1995.

Pre-Colonial India

Historically, over different periods of timeand almost till the advent of the colonial rule inIndia, including the reigns of Muslim kings, therulers exemplified as protectors, establishingcharity homes to feed, clothe and care for thedestitute persons with disabilities. The communitywith its governance through local elected bodies,the Panchayati system of those times, collectedsufficient data on persons with disabilities forprovision of services, though based on thephilosophy of charity. With the establishment ofthe colonial rule in India, changes becamenoticeable on the type of care and managementreceived by the persons with the influence fromthe West.

Pre-Independence–Changing Life Stylesin India

Changes in attitudes towards persons withdisabilities also came to about with city life. Theadministrative authorities began showing interestin providing a formal education system for personswith disabilities, particularly for families which hadtaken up residences in the cities.

Changes in the lifestyle of the persons withmental retardation were also noticed with theirshifting from ‘community inclusive settings’ inwhich families rendered services to that of servicesprovided in ‘asylums’, run by governmental ornon-governmental agencies (Chennai, thenMadras, Lunatic Asylum, 1841).

It was at the Madras Lunatic Asylum,renamed the Institute of Mental Health, thatpersons with mental illness and those with mentalretardation were segregated and given appropriatetreatment.

Special schools were started for those whocould not meet the demands of the mainstreamschools (Kurseong, 1918; Travancore, 1931;Chennai, 1938). The first residential home forpersons with mental retardation was established inMumbai, then Bombay (Children Aid Society,Mankhurd, 1941) followed by the establishmentof a special school in 1944. Subsequently, 11 morecentres were established in other parts of India.

Chapter 1

Historical Overview

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Post-Independent India–CurrentScenario

Establishment of Special SchoolsArticle 41of the Constitution of India (1950)

embodied in its clause the “Right to Free andCompulsory Education for All Children up to Age14 years”.

Many more schools for persons with mentalretardation were established including anintegrated school in Mumbai (Sushila Ben, 1955).

Notwithstanding this obligatory clause onchildren’s mainstream education, more and morespecial schools were also being set up by non-governmental organizations (NGOs) in an attemptto meet the parents’ demands.

Special SchoolsEstablishment of special schools in the

country since independence is shown below:

Year Number of Special Schoolsfor Children with

Mental Retardation

1950 10

1960 39

1970 120

1980 290

1990 1100

2007 More than 3000

Indian Education Commission, 1964-66The Indian Education Commission,

1964-66 made a clear mention of the presence ofonly 27 schools for persons with mental retardationin the entire country at that time.

In 1953, training teachers to teach personswith mental retardation was initiated in Mumbaiby Mrs. Vakil.

In 1971, special education to train personswith mental retardation was introduced in Chennaiat the Bala Vihar Training School by Mrs. M.Clubwala Jadhav.

In the same year, the Dilkush Special Schoolwas established in Mumbai initiating specialteachers’ training programs.

The various Acts passed and the policiestouching the lives of the disabled are dealt with inChapter 11, Policies and Programmes.

ConclusionThis introductory chapter is intended to

dispel the myth that very few services were availablein India until the period of the Colonial rule.

With the rights approach established throughseveral legislations, the quality, accessibility,affordability and availability of an array of serviceshave been strengthened.

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Introduction

Internationally, the definition of mentalretardation has moved away from a medical

model to that of an educational model which isfunctional and support based and emphasizes therights of the individual.

According to the Persons with Disabilities (EqualOpportunities, Protection of Rights and Full Participation)Act, 1995, enacted in India, mental retardationmeans a “condition of arrested or incompletedevelopment of mind of a person which is speciallycharacterized by sub-normality of intelligence”.

Field workers, parents and professionals inIndia opine that this definition has scope forimprovement.

To this date, a systematic enumeration of thenumber of persons with disabilities in the countryhas not been made, the reason being the largegeographical area. Data on educational and otherneeds of pre-school, school going children, youth,adults and senior citizens is not available.

Mental Retardation: Changing Concepts

The American Association on Mental Deficiency(AAMD)

The American Association on MentalDeficiency (AAMD), now the AmericanAssociation on Mental Retardation (AAMR), andalso known as the American Association onIntellectual Disabilities (AAID), has made a formal

Chapter 2

Definition, Incidence and Magnitude–Mental Retardation in India

change between 1959 and 1983, to include bothmeasured intelligence and adaptive behavior.

With the WHO definition, which is in usein Britain, and that of the Persons with DisabilitiesAct, 1995 in India, the AAMD definition (1983) ismore prevalent among the service providers andthe institutions, the usage being more of academicinterest than for operational reasons.

The AAMD (1983) definition reads “Mentalretardation refers to a significantly sub-averagegeneral intellectual functioning resulting in orassociated with concurrent impairments in adaptivebehavior and manifested during the developmentalperiod” (Grossman, 1983). It is a more functionaldefinition which stresses the interaction betweenthe person’s capabilities, the environment in whichthe individual functions, and the need for supportsystems.

The AAMR (1992) definition of mentalretardation, manifesting before age 18, refers to asubstantial limitations in present functioning,characterized by significantly sub-averageintellectual functioning which exists concurrentlywith related limitations in two or more of thefollowing adaptive skill areas: communication, self-care, home living, social skills, community use, self-direction, health and safety, functional academics,leisure and work.

In adopting this definition and theaccompanying classification system, AAMR (1992)suggests the mild, moderate, severe and profound

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classification in the previous definitions to besubstituted with ‘levels’ of support needed by anindividual: intermittent, limited, extensive, andpervasive.

These terms may be summarized as below:

• Intermittent: Support of high or lowintensity is provided as and whenneeded. Characterized as episodic orshort-term during life-span transitions.

• Limited: Supports are providedconsistently over time, but may not beextensive at any one time. Supports mayrequire fewer staff members and lowerexpense than more intense levels ofsupport.

• Extensive: Supports characterized byregular involvement (daily) in at leastsome environments (work or home) andnot limited (example: long term supportand long term home living support).

• Pervasive: High intensity supports areprovided constantly, acrossenvironments, and may be of lifesustaining and intrusive nature.Pervasive supports typically involve avariety of staff members.

This definition essentially restates the 1983AAMD definition except that it raises thedevelopmental period to age 22, consistent withthe federal definitions of developmental disabilities.

The Diagnostic and Statistical Manual-IV(DSM-IV) - 1994; International Classification ofDiseases (ICD-10)

The American Psychiatric Association in itsfourth edition of the Diagnostic and Statistical Manual

of Mental Disorders (DSM-IV); 1994, also retains theessence of the 1983 AAMD definition of mentalretardation as well as the levels of severity of mentalretardation.

Further, DSM-IV and the InternationalStatistical Classification of Diseases and Related HealthProblems, Tenth Revision (ICD-10) have coordinatedsections on mental and behavioral disordersconcurring with a common definition andclassification system for mental retardation.

This coordination specifies four degrees ofseverity reflecting the level of intellectualimpairment.

The AAMR 2002 definition reads “Mentalretardation is a disability characterized bysignificant limitations, both in intellectualfunctioning and in adaptive behaviour, as expressedin conceptual, social, and practical adaptive skills,the disability originating before the age of 18.

A complete and accurate understanding ofmental retardation implies that mental retardationrefers to a particular state of functioning, whichbegins in childhood, having many dimensions, andaffected positively by individualized supports.

As a model of functioning, it includes thecontexts and environment within which the personfunctions and interacts, requiring amultidimensional and ecological approach thatreflects the interaction of the individual with theenvironment.

The outcomes of that interaction are withregard to independence, relationships, societalcontributions, participation in school andcommunity 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 mentalretardation is as follows:

Level of Retardation IQ Range Approximate percentageStanford-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 ClassificationIn 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 definemental retardation with emphasis on significantlysub-average intellectual functioning of theindividual (assessed by the standardizedintelligence tests).

In India, where a majority live in rural areas,engaged mostly with traditional, semi-skilledvocations, the adapted Indian intelligence tests havelimitations in assessing the exact levels of

intelligence due to lack of standardization on suchpopulation.

No standard test has been so far developedsuited to the Indian cultural milieu.

CertificationA disability certificate is issued by a Medical

Board duly constituted by the Central and the StateGovernments.

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The State Government will constitute aMedical Board consisting of at least three membersout of which at least one may be a specialist in theconcerned field.

In need of correction in the certificationprocess are: limited availability of the specialists

in respective areas of disability, distance from theresidence to the assessment and certification place,lack of guidelines on the standard test and theperson to be used for assessment.

No indigenously established behavior normsare 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 forskills, minimal social awareness, fine speech functioning inretardation in motor development. minimal, sensory motor areassensory- motor Profits from training, generally needs running care.areas, often not self help can be unable todistinguished from managed. profit fromthose normal until training, selflate age. help little, no

communicativeskills.

School age Can learn academic Can profit from Can talk or Some motor6–20 years skills up to training in social and learn to development

approximately 6th occupational skills to communicate, present. Manygrade level by late progress beyond 2nd can be trained respond to minimalteens. Can be grade level in in elementary to limited training inguided on social academic subjects, skills and can self help.skills. may learn to travel profit from

alone in familiar systematicplaces. training.

Adult 21 & Can usually achieve May achieve self May contribute Some motor andover. 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 selfminimum, self needs supervision supervision, care needs aresupport but may and guidance when can develop achieved.need guidance and under mild social or self protectionassistance when economic stress. skills to aunder social or minimal usefuleconomic stress. levels in

controlledenvironment.

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Incidence and Magnitude of MentalRetardation in India

Estimates in IndiaMost available data on the prevalence of

mental retardation in the country is derived fromthe psychiatric morbidity surveys conducted by themental health professionals in specific orcircumscribed geographical areas or on targetpopulations, such as rural-urban, industrialpopulation and educational institutions.

The prevalence rates of mental retardation,some from the school population, some from thegeneral population, is reported from 1951 to 1994,in the range of 0.07 to 40 per 1000. The prevalencerates for mental retardation in the schoolpopulation and the general population, rural andurban, based on psychiatric morbidity surveyranges from 0.1 to 140. The sample selected hasbeen a skewed one.

The variation in these figures does not givea clear picture of the situation.

The National Sample Survey Organisation (NSSO)The National Sample Survey Organisation

(NSSO) under the Department of Statistics,Government of India conducts large scale surveyfor socio-economic planning and policyformulation. The first large scale attempt to collectinformation on the prevalence of developmentaldelays was made in the 47th round of survey byNSSO.

Data obtained from various sources indicatethat the prevalence rate of mental retardation isabout 20 per 1000 general population while theprevalence of developmental delays is about 30 per1000 in the 14 year-old population.

In rural areas, the incidence of mentalretardation is 3.1% and in urban, it is 0.9%. The

NIMH mentions that 2% of the general populationis MR. Three quarters of them are with mildretardation and one-fourth are with severeretardation (Panda, 1999).

A door-to-door survey conducted in TamilNadu in the districts of Kancheepuram (Rajaram-Dist. Collector), Ramanathapuram (Vijay Kumar-Dist. Collector), in 2001 and earlier in 1984 inTiruchirapalli in a population of 50,000,(Jeyachandran) indicates a prevalence of 1 per1000.

Difficulties in Collecting Accurate Prevalence RatesA large, population which is diverse in

psychosocial, educational, economical and culturalbackground, limited number of specialists and lackof standard tools for assessment are the maindifficulties.

Those with mild mental retardation remainunidentified as they could be involved in a semi-skilled vocation and in a structured and restrictedenvironment.

Government of Tamil Nadu InitiativeThe Government of Tamil Nadu has

initiated creation of a data base on disabilities (2007)on the population with a door-to-door survey inall its districts.

Standard formats have been developed toidentify disabilities as listed in Persons withDisabilities Act and the National Trust Act.

The survey is based on the etiology of eachof the listed disabilities. All the District DisabilityRehabilitation Officers, village health workers,Anganwadi workers, the CBR workers, NGOs,working in the field of disability, members of theNational Cadet Corps and retired veterans fromthe armed forces received the required training forthe survey.

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Estimates in IndiaIn India, the incidence and magnitude of

mental retardation needs to be looked into.

Theoretically, the horizon of specialeducation is often restricted only up to the age of18 years for persons with disabilities. “Schooling”or attendance in a class room alone is oftenconsidered ‘education’ even among the literatepopulation of the nation.

NSSO Survey, 1991The National Sample Survey Organisation

(NSSO) under the Department of Statistics,Government of India conducts large scale studiesand surveys for socio-economic planning andpolicy formulation. The first large scale attempt tocollect such information on the prevalence ofdevelopmental delays was made in the 47th roundof survey by NSSO carried out between July-December, 1991, on children age group 0-14years, coming from 4,373 villages and 2,503urban blocks.

Table 2: Prevalence Studies Based on National Sample Survey Organisation

Sl. No. Investigator/s Year Target Population Place of Study PrevalenceRate/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 indicatethat the prevalence rate of mental retardation isabout 20 per 1000 general population, while theprevalence of developmental delays is about 30 per1000 in the population of children up to the age of14 years.

ConclusionIt is difficult to collect the accurate prevalence

rate of mental retardation in a country like Indiareasons for which have been given above.

In the Census of India, 2001, an attempt hasbeen made to assess the disability population inthe country belonging to different categories.Unfortunately, no reliable information could beobtained from such data as regards mentalretardation since it has been clubbed with mentalillness, a term alien to mental retardation in itscurrent conceptualization.

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Chapter 3

Early Identification and Prevention ofMental Retardation

Introduction

W ith the implementation of the Persons withDisabilities Act (PWD), 1995 mental

retardation has been recognized as a disability withan identity of its own. Earlier, data on mentalretardation had been clubbed with data on mentalillness.

It is only in the recent years that earlyidentification of persons with mental retardationhas become possible.

Systematic thinking on screening andidentification emerged consequent to the NationalPolicy on Education (NPE), 1986, even thoughworking groups had been set up even as early as1981 during the International Year of the DisabledPersons (IYDP) by the then Ministry of Welfare.Early identification includes screening, earlydiagnosis and parent counseling.

Information on early identification andprevention is also presented in Chapter 6 on ‘Arrayof Services’ and other chapters.

ScreeningScreening is a procedure for an initial

identification of persons with mental retardationand for a follow up with assessment.

Screening ProcedureMany of the screening techniques collated

by National Institute for the Mentally

Handicapped (NIMH), Secunderabad, appearedin RCI: Status of Disability in India, 2000.

A more systematic process and procedure hasbeen the pooling of a battery of tests on clinicalinvestigations by the NIMH, for identification andscreening of persons with mental retardation. Theyinclude pre-natal, neonatal and post-nataldiagnostic procedures:

(i) Pre-natal Procedures

• Blood tests for the pregnant mothers forany anemic condition, diabetes, syphilis,Rh incompatibility and neural tubedefects in the foetal stage.

• Ultrasonography (during pregnancy)iscarried out in the second trimester ofpregnancy to detect such disorders as -neural tube defects, hydrocephaly,microcephaly, hydrencephaly,holoprosencephaly, prosencephaly andsome cerebellar lesions. Intra-uterinegrowth retardation can also be detectedthrough such measurements as foetalbiparietal diameter, crown rump lengthand transverse abdominal diameter.

• Aminocentesis is indicated in cases of foetalchromosomal aberration, congenitalmetabolic errors and open, neural tubedefects, severe Rh incompatibility andalso in cases of advanced maternal agewith previous birth history of an

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abnormal child. Aminocentesis is aprocedure for purposes of earlyidentification and primary preventionfor many genetic abnormalities.

• Foetoscopy is done during secondtrimester of pregnancy in diagnosingcertain physical anomalies, metabolicdisorders or biochemical abnormalities.

• Chorionic Villous Sampling where a biopsyof the chorionic villi is performed eithertransabdominally or vaginally. Thesample is then subjected to karyotypingand enzyme determination.

(ii) Neonatal and Post-natal Screening and DiagnosticProcedure

Blood and urine examinations are conductedin the neonatal period in all suspected cases andwith a previous history of mental retardation inthe family.

Cretinism is another condition which can bediagnosed in the neonatal period and necessarytreatment given.

• Apgar Score at one minute after deliveryis an index of asphyxia and the need forassisted ventilation.

• Urine screening for metabolic errors -PKU (Phenyle Ketoneuria).

• Blood biochemistry tests for cretinism,rickets, jaundice.

• Blood antibody titres to detectinfections.

• Chromosomal analysis for DownSyndrome, deletion of syndromes.

• Neonatal neuro behaviouralassessments.

• EEG electroencephalogram for seizuredisorder.

• Screening for visual impairments (visualacuity, fundus examination,retinoscopy).

• Screening for hearing impairments(Tympanogram, BERA.)

• Ultra sonogram.

• CT scan (computerized tomography).

• MRI (Magnetic Resonance Imaging) forintra-cranial pathology and structuralabnormalities.

• Ultra Sound Examination: The techniquecan be used to detect displacement ofbrain midline structures, thickness ofbrain substance, pathological cavities inthe brain. Real-time ultrasoundexamination of the head can revealintracranial haemorohage in thenewborn.

• Biochemical Tests in neonatal screeningfor identifying metabolic disorders.

• Electro Encephalography (EEG): EEG isuseful not only in epilepsy, but in manyother cases of mental retardation andorganic brain lesions. In certain cases italso helps in localization of lesions andthe severity of a cerebral damage.Incidence of abnormal EEGs is higherin cases of mental retardation associatedwith epilepsy, encephalitis, severe degreeof mental retardation and brain damagesustained before birth or during birth orin the early period of infancy.

• Computerised Tomography (CT): Thereare many abnormalities which can bedetected by CT scan of the CNS,such as, anoxia of tissue, intracranialhaemorhage, hydrocephalous andcongenita l anomalies l ikeholoprosencephaly, a-genesis of

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corpus ca l losum, Arnold chiar imalformations, congenital cysts,calcifications, etc.

• Magnetic Resonance Imaging (MRI): Thisscreening helps in identifying a largenumber of persons with suspecteddisability in a limited time period.

Screening ToolsThe NIMH has developed quick Screening

Schedule I (Below 3 years) and Screening ScheduleII (3 to 6 years) shown in Table 1.

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 childhave any serious delay in sitting, standing orwalking?

• Does the child appear to have difficulty inhearing?

• Does the child have difficulty in seeing?• When you tell the child to do something, does

he seem to have problems in understandingwhat you are saying?

• Does the child sometime have weakness and/or stiffness in the limbs and/or difficulty inwalking or moving his arms?

• Does the child sometimes have fits, becomesrigid, or lose consciousness?

• Does the child have difficulty in learning todo things like other children of his age?

• Is the child not able to speak at all? (cannotmake himself understood in words/say anyrecognizable words).

• Is the child’s speech in any way different fromnormal? (not clear enough to be understoodby people other than his immediate family).

• Compared to other children of the same age,does the child appear in any way backward,dull or slow?

If an answer to any of the above items is‘yes’, then suspect mental retardation.

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Other Screening ToolsSome of the other popularly used tools in

India include

• Cooperative preschool inventory-Caldwell.

• Croydon Scales (Screening Checklist)(Wolfendale & Bryans).

• Denver Developmental Screening Test(Frankensberg, Dodds and Fandal).

• Early Childhood Assessment: A criterionreferenced screening device (Schmaltz,Schramn and Wendt).

• AGS Early Screening Profiles (Harrison,et al.).

• Developmental Indicators for theAssessment of Learning-R (Mardell, etal.).

• Early Screening Inventory (Merisels, etal.).

• Brigance ‘K’ and ‘T’ Screen forKindergarten and First Grade(Brigance).

Indian Screening Tools• Developmental Screening Test (DST) by

Bharat Raj is a widely used screening tool byprofessionals. The NIMH schedules notedearlier are used for further referral.

• Upanayan Early Intervention ProgrammingSystem (1987).

• Functional Assessment Check List forProgramming (FACP) 1991.

• The revised Madras DevelopmentalProgramme System Behavioural ScaleMDPS-A curriculum based assessmentchecklist (1975) is suitable for identificationpurposes.

Screening of Childhood DisabilitiesA multi-centered study carried out in 1994

at NIMH revealed that about 50% of parentsrecognize the delayed development or mentalretardation of their children below the age of 2 yearswhile 35% of the parents recognized only after theage of 2 years.

Screening Approach in the CommunityThe screening approach in the community

involves sorting out children who are at risk andthe diagnostic evaluation of those identified inscreening. Bio-chemical/Metabolic Screening inPersons with Mental Retardation is in use, but notavailable freely to the public.

Selecting Appropriate Screening MeasuresFor screening or an early detection program,

appropriate screening measures must be selected.

• A screening device should meet thetechnical criteria of standardization,reliability, validity, and normative data.

• The screening instrument should alsobe culturally appropriate, acceptable tothe participants and cost effective.

• Screening tests must have establishedsensitivity and specificity to be valid.

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Commonly Used Screening InstrumentsSome 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 Raj1-15 years; 10 min. 1977, 1978, 1983

2. Gesell Drawing Tests Verma, Dwarka & Kaushal1 -8 year; 15 min. 1972

3. Infant Intelligence (Development) KulshreshtaScale 0-3 years; 30 min. 1975

4. Mental and Motor Growth of Indian Babies Pramila Phatak1-2 years; 15-20 min. 1976, 1977

5. Vineland Social Maturity Scale Malin0-15 years; 15-20 min. 1970

The developmental approach is generallyused for developmental assessment and forplanning early intervention programs.

Developmental Schedules

The most commonly used developmentalschedules are:

• Gesell Developmental Schedules.

• Baroda - Bayley Scales of InfantDevelopment.

• Motor and Mental Development ofIndian Babies (Pramila Phatak).

• Kulshrestha Infant Intelligence Scale. Afocus in India in recent year is theimportance of assessment for planningthe teaching schedule by the teacher.

An informal functional assessment guide forall disabilities has been developed (NCERT, 1990)for use by teachers.

Assessment ToolsIn addition, educational assessment tools for

children with mental retardation used are:

• Madras Scale (1968).

• Madras Developmental ProgrammingSystem (MDPS, 1975).

• Upanayan Early InterventionProgramme (1987).

• Functional Assessment Checklists(1994) by National Institute for theMentally Handicapped.

• Behavioural Assessment Scale for IndianChildren with M.R. (BASIC-MR) –NIMH.

• ARAM- NIMH

Primary Health Centres (PHCs)Primary Health Centres as well as the District

and Municipal/Government hospitals are equippedwith maternal and child health services.

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Documentaries on prevention, earlyidentification, and the support systems in the careand management are available for screening inmany hospitals in the metropolitan cities. Researchlaboratories in the country are equipped for genetictesting and counseling.

PreventionPrevention refers to the measures taken to

prevent the disability from occurring.

The World Health Organisation (WHO),American Association for Mental Retardation(AAMR), American Association on MentalDeficiency (AAMD), International Classificatioonon Deficiency (ICD), Diagnostic and StatisticalManual (DSM-IV) definitions of mentalretardation relate to three levels of prevention:

(i) Primary level of prevention is carried outby doctors and health professionals toprevent manifestation of the disability.

(ii) Secondary level prevents themanifestations of additional disabilitiesand regression.

(iii) Tertiary level mitigates the impact ofdisability on social isolation,stigmatization of the handicap.

Based on the principles of early identificationand intervention, prevention of mental retardationis taken as early as possible.

Prenatal Prevention relates to

• Dealing with causal factors such as Rhincompatibility; maternal illness,infections and other high risk conditions,such as malnutrition in mother and childduring the first trimester of pregnancy,environmental and occupational hazardsand consanguinity.

• Prenatal diagnosis where preliminaryinvestigations are carried out, blood andurine tests investigations to assess thefoetal abnormalities through ultrasonography, radiography, andaminocentesis.

• Immunization to the mother forpreventing illnesses and infectionsleading to disability in the foetus.

Follow up action is provided throughperiodic checkups, prompt treatment and effectivemanagement plan with a balanced diet and periodichealth checkups.

Natal Prevention relates to

• Delivery conducted under hygienicconditions by a trained person and/or ina hospital, to prevent breech delivery,asphyxia, prematurity with low birthweight, occurrence of jaundice, andother post-illnesses in the child.

• Care of new borns at high risk for mentalretardation in well equipped neonatalintensive care units; a close follow up toidentify delays and abnormalities indevelopment; facilitating interventionsand corrections at the earliest therebyreducing the severity of handicap.

Postnatal Prevention relates to

Neonatal screening with simple blood andurine tests for metabolic abnormalities andhypothyrodisim, associated conditions that lead tomental retardation.

National Health Policy, 1983—OptimalPrenatal Care

Under the maternal and child healthprograms, the National Health Policy, 1983 in

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the context of global objective of Health for All by2000 A.D. has, inter alia, set the following points:

• Reduction of infant mortality to less than60/1000 live births: Prophylaxis schemeagainst nutritional anaemia amongpregnant and lactating women which isone of the major health problemsaffecting intrauterine growth of thefoetus.

• National AIDs Control Program: TheGovernment has set up five regionalS T D - c u m - H I V- d e t e c t i o n - c u mprevention centers and STD referencelaboratories at Kolkata, Hyderabad,Chennai, Nagpur and Delhi to deal withinfection, leading to disability.

• National Iodine Deficiency Disorders ControlProgram: The iodine deficient womenfrequently suffer abortions and even stillbirths. Their children may be bornmentally retarded or as cretins. In Indiaalone, 167 million people are at risk ofIodine Deficiency Disorder (IDD). Theprogram aims at iodizing all marketedsalt in the country in a phased manner.After launching the 100% CentrallySponsored National Goitre ControlProgram in 1962, it has now beenrechristened in April 1992 as theNational Iodine Deficiency DisorderControl Program.

Role of Non-Govt. Organizations inEarly Detection/Prevention

The NGOs have demonstrated theirleadership in services from prevention torehabilitation, and especially in early intervention.They have also coordinated with the governmentin carrying out awareness program by taking outrallies and demonstrations through street plays withprimary school children, their teachers, and headmasters. Information on early identification andprevention is also presented in a tabular form inChapter 6 on ‘Array of Services’.

ConclusionIn India, like in other developing countries,

early detection of mental retardation has beenachieved at the national level. In recent times,creation of awareness and education has facilitatedthe development of positive attitudes in the familyand in the community. Learning environments andexperiences that promote independence andinclusion in the community have now becomemandatory.

The Rehabilitation Council of India (RCI)has initiated early childhood special educationtowards the provision of comprehensive servicesin the prevention, intervention, care andmanagement of children with mental retardation.

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Introduction

The right development of the child must beensured during the early years when great

changes of long-lasting influence take place. Thismust be noted by the governments while makingpolicy decisions.

Information on early childhood care andprevention is also presented in a tabular form inChapter 6 on ‘Array of Services’.

The Rationale for Early InterventionPrograms–0-3 Years

Several studies conducted overseas and inIndia, between 1939 and 1968 and those in therecent decades, i.e., between 1986 and 1998 haveshown the importance of early intervention andits effects on the developing child. The Frenchpsychologist, Robert Lafon’s statement, “If you areslow, you simply have to start earlier”, is relevantto early intervention programs.

Importance of Early IdentificationStudies Conducted in India

Jeychandran (1968) conducted The MadrasProject, the first in India, concluded as follows:

• It is feasible to train mothers in day carecentres; the longer the training the morepositive and lasting the effect on thechildren. The trained mother gains acaring position as a carry-over agent.

• Greater the parental participation, faster

Chapter 4

Early Childhood Care and Intervention

is the impact on the child. Positiveattitudinal changes in parents may beseen within six months’ ofcommencement of training.

On the importance of early intervention,Madhuram Narayan Centre for ExceptionalChildren (Jeyachandran, Jaya Krishnaswamy)observed that:

• Earlier the intervention, better are theresults; it limits disabilities; it helps inmainstreaming and in appropriateplacement in special schools; fosters theemergence of parents’ networks and theprovision of special schools in thecommunity.

• Individualized Family Services Programcan be effective.

• An initial total involvement, from birthto two years, with gradual weaning, helpsthe parents become effective carry overagents at home.

Early Childhood Care and Education(ECCE)

Early Brain Development

At birth, a baby has about 100 trillion braincells which must be organized into networks thatrequire trillions of connections and synapsesbetween them. Stimulation given to the foetus aswell as to the new born baby speeds up myelinationand networking in the brain.

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National Policy on Education, 1964The National Policy on Education, 1964 has

given much importance to Early Childhood Careand Education (ECCE), viewing ECCE as a crucialinput in the strategy of human resourcedevelopment (HRD). It is a feeder and supportprogram for primary education and a supportservice for working women of the disadvantagedsections of the society.

Emphasis has been given to:

• establishing linkages between theIntegrated Child Development Services(ICDS) and other ECCE programs,

• the scheme of assistance to voluntaryorganizations, for conducting ECCEcentres,

• activities of the Balwadis and Daycarecenters run by voluntary agencies withgovernment assistance, and

• the pre-primary schools/anganwadis andthe maternal and child health servicesthrough PHC/sub-centers.

ECCE – A Total DevelopmentThe ECCE involves the total development,

i.e., physical, motor, cognitive, language,emotional, social and moral of the child fromconception to about six years.

The development process during this periodincludes:

• mother’s care during pregnancy (ante-natal health check-up; nutritional careof mother during lactation; nutritionalsupport and control of anaemia),

• hygienic and skilled birth attendance,immunization for prevention of tetanusfollowing delivery,

• correct infant feeding practices,immunization of infant fromcommunicable diseases,

• mother’s education in the child care,

• early childhood stimulation, and

• health and nutritional supportthroughout.

Since it has a complex integral function,workers with ECCE training are required inintegrated work sites or ECCE centers where theessential service flow to the young children throughthe period of their growth and preparation forformal education takes place.

To tap the full advantage of well integratedECCE activities and associated programs, effortsare being directed at coordinating the functioningof various agencies which are striving to meetdifferent needs of young children.

The Department of Women and ChildDevelopment which works in collaboration withthe Labour, Education, Rural DevelopmentDepartments, is the nodal agency for ECCEprograms.

Community as well as parental participationis enlisted wherever possible, in resourcemobilization, planning, and implementation.Adequate representation of mothers is organized.

The role of capable voluntary agencies isemphasized to create a wide and rich network ofresources of ECCE.

Ongoing programs/schemes, such as, ICDS,ECCE centers, Balwadis run by voluntary agencies,Pre-Primary Schools and Day-care Centers thatreflect a concern for the holistic development ofyoung children are being improved.

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Early Intervention for Children withMental Retardation

Of all the disabilities, mental retardation isthe one neglected the most. Those with mentalretardation and in the age group six years and under,constitute a significant percentage of childrenwhich is substantial in view of the large populationin the country.

Awareness among the public in India, aboutthe need to provide services to infants and childrenwith mental retardation has come only in the lastdecade.

With this awareness, at present, servicecentres are available, some providing exceptionallygood services. But there are only 198 centresoffering early intervention programs for the entirecountry, leaving the demand largely unmet.

Need for a Comprehensive EarlyIntervention Program

A child with developmental delays needs anindividualized program taking into account thefamily needs, preferences and supports.

Family priorities are best satisfied with everymember of the intervention team, the specialeducator, the parent or care-giver and the membersof the interdisciplinary team of experts knowingwhat the priorities are and working inco-ordination and collaboration.

Early intervention is not just programmingon detection of delay or disability, but it lies in theprevention of developmental delays - primary,secondary and tertiary prevention.

Primary prevention calls for systemic andsocietal changes in nurturing children duringtheir development, elimination of specificconditions that lead to a later disability,counseling and guidance services to

adolescents and adults in planning forparenthood and increasing availability ofparental care.

Secondary prevention seeks assessment of themagnitude of the disability or delay, reducingor eliminating its future impact on both theindividual and the society.

In tertiary prevention, the effects can be lessenedand the development of the individualfostered.

Challenges of early intervention are:

• Infant tests not highly predictive of laterfunctioning though they indicate a trend.

• Individual variations in the influence ofenvironmental conditions and earlyintervention on the long term effects ofillness and other disabling conditions.

• Difficulties in the assessment ofdisability in infants and toddlers.

• Absence of data on the number ofchildren with special needs and registerof services.

Parental-Child Development/EmotionalSupport/Respite Care/ParentOrganisations/Social Services

How well the child has adapted himself/herself in performing his/her daily living activitiesand how he has been helped to be “included” innormal settings by the other members of thecommunity with cultural pluralism speak for thesuccess of an early intervention program.

Need for Social Audit on Program ImplementationServices

In addition to the challenges cited above,the absence of a clear-cut social audit onprogram implementation that directly benefit

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the child receiving the services has been felt inthe country.

Several services are available each with adifferent type of program. There are those

• that are highly structured, and offerintensive individualized teachingdirected at specific goals for eachchild,

• that enhance development bycounteracting delay or impairment,

• that are “catch all” ranging from groupplay, movements, music, dance, art, andany other,

• that are operating in a vacuum with nocertainty that the children in need areactually benefiting.

A social audit will give certainty anddirections to the service providers enabling themto meet the needs of the child with disability. Oflate, there has been a move in this direction by theGovernment of India.

India has a vast resource in human potentialand numbers. Many of the challenges can be metby involving this rich resource.

Family Involvement and CommunityParticipation—A Basis for DevelopingIntervention and Providing Services

In a family-oriented approach, every memberof a family is actively involved in the managementof a child with disability and towards this goal,effort- “prayaas” and, practice -“sadhana”, thefamily members are educated, directed, facilitatedand empowered by the professionals whocooperate with them in providing services. Familiesand professionals are then collaborators in the

human enterprise – the provision of services topersons with disabilities.

Early Intervention Programs

Mathuram Narayan Centre for Exceptional Children(MNC), Chennai

Training at the Centre, which was establishedin 1989, is based on the Upanayan EarlyIntervention Program developed indigenously byIndchem Research and Development Laboratoryto fulfill the need for a structured program,culturally appropriate, suitable to the Indian socio-economic needs.

The program is the first systematic onedeveloped in the country which has since beentranslated and in use in many centres in the country.

The Centre is the first of its kind in thecountry, providing services to over 4,000 childrenat present. Accompanied by their mothers, about150 children attend the Centre everyday.

Parental involvement is the foundation of theprogram at the Centre where the children aretrained by their mothers (or close relations in afew cases), turned into carryover agents by thespecial educators. Parents practice yoga and pranichealing regularly with their children.

National Institute for Mentally Handicapped(NIMH), Secunderabad

The department of special education andmedical rehabilitation division under the NIMHtakes up early intervention program for childrenwith mental retardation.

Infants and toddlers suspected or at risk fordelayed development in the age group of 0-3 yearsare given early intervention services once a weekby a multi-disciplinary team of experts. The parentsare given guidance regarding immunization,

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nutrition, feeding, motor development, speech andlanguage development and psycho-socialinterventions.

A set of brochures has been developed as apart of the Indo-US project on early interventionto intra-uterine growth retardation (IUGR)children at risk for developmental delays.

A book in simple language and illustrationsfor children with special needs (Narayan, 1999)has been developed. It is very useful to parents andteachers in readying children with mentalretardation for regular schools.

Also used by the DPEP scheme of the Govt.of India, the activities cover conversation, andcreative activities for different levels of retardation.

NIMH has also brought out video films on“Step by Step We Learn Give them a chance”,“Sahanuhbhuti Nahi Sahyog” for awarenessbuilding from the point of view of earlyintervention services, schooling and vocationaltraining. The films bring a spirit of optimism.

Thakur Hari Prasad Institute for Research &Rehabilitation of the Mentally Handicapped (THPI),Hyderabad

The THPI, Hyderabad undertakes earlyinterventions and early stimulations involvingparents. It has adopted the Portage program andHead Start program of the West with the feelingthat most of the early stimulations programsespecially Portage relies heavily on home basedtraining.

But experience has shown that at that time itbecomes difficult for a poor illiterate mother in apoverty stricken, nuclear family to carry homebased training and stimulation programs as bothparents have to struggle for their survival all daylong with very little time or energy to attempt home

based training.

There is a need, therefore, for a peripatetictrainer and/or a neighborhood center for day careneeds to be looked into realistically. There is afurther need to have separate personnel at grassroot level to attend to early stimulation programsfor persons with mental retardation for sustainableintervention.

Others that could also be directed foreffective interventions are: The Public HealthCentre (PHC)-based or hospital-based program,District Rehabilitation Centre (DRC)rehabilitation programs, early intervention withinfants at risk, Andhra Pradesh Association for theWelfare of the Mentally Retarded (APACWMR),parents self help groups; National Institute for theMentally Retarded (NIMH Model), institution-based extension services, ACTIONAIDcommunity-based program worked in rural areas.

Deepshikha, RanchiDeepshikha, Ranchi through its outdoor

services and extension clinics at Kanke andHulhundu is working in the field of earlyintervention and child care and training.

Vijay Human Services, ChennaiVijay Human Services, Chennai has

developed a 24-hour time table for every childwhich is being implemented as IndividualisedProgramme Plan (IEP) at the Centre and asIndividualised Family Services Programme(IFSP)at home.

Manovikas Kendra Rehabilitation and ResearchInstitute for the Handicapped (MRIH), Kolkata

Working since 1974, it has created publicawareness on children with mental retardation,their needs and capabilities among pediatricians,neurologists, psychiatrists, and doctors in addition

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to the special educators.

Services are provided for families and theirchildren with disabilities from birth to six years.Services are provided for 9 infants in the dailysessions and for 10 children in weekly sessions.

The children undergo an early assessmentfollowed immediately after by Individual LearningPlan. Emphasis is laid on training in thedevelopmental areas of cognitive, social, language,motor and self-help skills. Care and counselling isgiven to reduce the emotional stress which parentsundergo.

Sweekaar Rehabilitation Institute for theHandicapped, Secunderabad

Sweekaar Rehabilitation Institute for theHandicapped, Secunderabad, has a comprehensiveand pervasive early child care and intervention unitassisted by the multi-disciplinary team.

The Center follows an individualized earlyintervention program. A few other well equippedcentres with teaching learning materials, aids andappliances, have been established by Sweekaar atseveral places in the state of Andhra Pradesh.

The Centre at Secunderabad with its wellprovided infrastructure, offer programs for over400 children for early intervention in a day.

ConclusionWell developed early intervention programs

are available.

Some service models with a CBR approachhave been introduced to disseminate informationon early intervention programs through villagelevel workers. This effort has also helped innarrowing the lapse of time between detection andintervention.

Indigenously developed home-boundintervention programmes for young children withvisiting trainees are in use in local village or urbanpre-schools.

A comprehensive Early Childhood Care andEducation (ECCE) includes the following servicesin centers for effective functioning:

• Family counselling.

• Health/Nursing/Nutrition care.

• Occupational/physical therapy.

• Psychological, Audiological, Speech/Language Services.

• Special Education.

• Social work.

• Transportation

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Chapter 5

Assessment in the Field of Mental Retardation:Current Practices

Introduction

Assessment for persons with mental retardation and associated conditions needs a

multidimensional approach in terms ofmethodology, sensitivity and capacity building oftesters with inputs from an interdisciplinary teamof experts. This is necessary for a society which isculturally diverse.

Assessment of adaptive behavior, whichdistinguishes a person with mental retardationfrom others, has become an important component.

Heber (1961) has described adaptivebehavior as, “the effectiveness with which theindividual copes with the nature and socialdemands of his environment”.

Prior to the development of adaptivebehavior scales and intelligence tests, “socialincompetence” was the main characteristic whichwas used to determine whether a person wasmentally retarded or not (Nihira, 1969).

AssessmentFor an appropriate Individualized Program

Planning, accurate and comprehensive informationof the individual is essential.

For this purpose a standard assessment toolis necessary. Systematic observations and analysisof an individual’s skills and deficits identifies theindividual’s present developmental level andprovides information about his strengths, abilitiesand developmental needs. This forms the basis foreducational programming.

Overall Purpose of AssessmentThe assessment tool should

• be developmental, indicative of both thestrengths and the needs of the assessedindividuals,

• be easy, and simple to administer and torecord even by a non-professional;versatile enough to be administeredindividually and also in groups;economical—time-wise and cost-wise,using materials available in homes or inclassrooms,

• yield results, a profile of the individualthat can be easily used for programplanning, interpreted to parents; usefulfor on going assessments; acommunication tool for future use inplacement and which is comprehensiveabout the individual’s development andneeds.

Specific Purpose of Assessment• Initial identification or screening.

• Determination of current performancelevels, educational needs, evaluation ofteaching programs and strategies (pre-referral intervention).

• For decision-making, regardingclassification and program placement.

• Development of Individual EducationProgram including goals, objectives andevaluation procedures.

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Requirements in ProgrammingAn assessment provides answers to the

following requirements in programming:

Step 1: Behavioral assessment is a completestatement of the behavioral level or performancelevel of the person. A person’s past behavior andpresent level of functioning is looked at todetermine what he needs to work on now

Based on the assessment, a decision on thefuture program of action is taken on how far theperson needs to advance in behavior and inacquiring daily living skills.

Assessment leads to an individualizedprogram plan.

Step 2: It states in general terms a Goalstatement arising directly from the assessment andstates the behavioral objective which is a statement ofthe expected behavior in specific terms. Theobjectives stated, which should be observable andmeasurable, is followed by the method of teachingthis targeted (new) behavior.

Step 3: Evaluation of the individualized programplan: It is the looking back on the behavioralobjective and asking if the behavior changeobserved as stated in the objective was timely. Ifnot, why not? This step evaluates the individualizedprogram plan and not the person’s entire behavior.

Note: Evaluation is done to determine theeffectiveness of the program. But assessment is forcreating a baseline for further programming andintervention.

Tools Available in IndiaPersons with mental retardation are assessed

for intelligence, personality, education, socialachievement, special abilities, and aptitudes.

Primary assessment includes recording of casehistory, physical examination of the child, pre-

school assessment, school learning and post-schooladjustment.

The approach, so far, has been psychometriceven though adaptive behavior assessment hasformed the basic component in testing forscreening, placement and programming forintervention.

The TestsAdaptive Behavior Scale (AAMD-Lambert

et al., 1981), Vineland Social Maturity Scale (Doll,1953) and a few others have been adapted for usewith Indians, but there has been a wide differencein the application of each.

In this direction, the Madras Scale(Jeyachandran P., 1968), Madras DevelopmentProgramming System (Jeyachandran P. and VimalaV., 1975; revised 1983) was the first adaptivebehavior scale to be developed in the country forimplementation of the Individualized EducationalPlan (IEP). The reprinted edition (2002) is beingused throughout the country.

Following this pioneering development ofthe Madras Scale (1968), the following wereevolved at the NIMH, Secunderabad:

• Behavioral Assessment Scale for IndianChildren with Mental Retardation(Peshwaria and Venkatesan, 1992, Basic-MR).

• Functional Assessment Tools(NASEOM).

• Assessment of the Mentally RetardedIndividuals of Grouping and Teaching(NIMH, 1991).

• Problem Behavior Checklist (Peshwaria,1989).

• Maladaptive Behavior Checklist(Peshwaria & Naidu, 1991a).

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• Problem Behavior Checklist (Arya,Peshwaria, Naidu & Venkatesan, 1990).

• The Assessment Scale-Speech andLanguage (Subba Rao, 1998).

• Behavior Disorder Checklist (Mishra,1990).

• Adaptive Behavior Scale (IndianRevision) (Gunthey & Upadhyaya,1982).

• Educational Assessment of the Personswith Mental Retardation, based onfunctional performance rather on verbalperformance (Jangira, Ahuja, Kaur, &Sefia, 1990).

• School readiness measure development(Muralidharan, 1975).

The Illinois Test of Psycho-LinguisticAbilities in its adapted form, available in ourcountry (Sahoo, 1988), is used for diagnostic andrelated language processes.

The ERIC (NCERT) has initiateddeterminants to assess the psychometric validityof Indian tests in various areas which need widerdissemination

Madras Developmental Programming System(MDPS), 1975

• The scale consists of 360 observable andmeasurable items. Grouped under 18functional domains, such as gross motor,fine motor, eating, dressing, grooming,toileting, receptive and expressivelanguage, social interaction, reading,writing, numbers, time, money,domestic behavior, communityorientation, recreation and leisure timeactivities, vocational activities.

• Each domain lists twenty items in thedevelopmental order, along the

dependence-independence continuum.

• The MDPS also provides an AdaptiveBehavioral Assessment of each childwith mental retardation.

• The MDPS system helps to recordchallenging behaviors (problembehavior) which can be taken care ofthrough the IEP. A schedule for themanagement of challenging behaviors isalso included.

• The administration procedure involvesgetting information regarding the skillsand behaviors that the child can orcannot do currently.

• Information is derived through directobservation of the child, through parent/caretakers’ observations and by means oftesting in simulated situations or throughinterviews.

• The child’s performance on each itemis rated from two directions, A or B,depending on whether the child does notor does perform the target behavior listedas an item on the scale.

• The data recorded/presented, graphicallyand/or numerically, at weekly, quarterly,and annual intervals, helps the teacherto set goals and draw behavior profilesof the assessed individual; it helps in theevaluation of a child’s progress over aperiod of time.

• Once the assessment is completed,persons with mental retardation, as perthe design, will naturally fall into theeducational classifications: pre-primary,primary, secondary, pre-vocational andvocational.

• The reliability and validity of this scalehas been established.

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Upanayan Developmental Programming System(UDPS) for Children with Mental Retardation(Madhuram Narayan Centre for ExceptionalChildren, Madras), 1987

It is comprehensive, covering themanagement of children with mental retardationin the age group of 0-2 years and 2-6 years to meeta ‘felt need’ for systematic training. Appropriate toIndian conditions and suited to the cultural milieu,the printed program comes equipped with a usermanual and a set of activity cards.

Upanayan Early Intervention DevelopmentalProgramming System: This System consists ofbackground information form (Case history), theUpanayan checklist, profiles, evaluation formats –Graphical and Numerical, an assessment kit,activity cards, training materials and a user manual.

The check list, covering the five areas ofdevelopment from birth to 2 years, is arranged inthe normal developmental sequence, comprisinga total of 250 skills, 50 from each domain, such as,motor, self-help, language, cognition andsocialization.

The activity cards are colored differently foreasy identification. The manual gives instructionson the use of the checklist and the activity cardsand a list of materials to be used during assessment.

In the Upanayan program, age 2 + to 6 years,the check list includes 50 skills in each of theselected 12 domains, a total of 600 skills.

The domains are: communication, self-care-meal time activities, personal daily activities, socialactivities, community use, self direction, health andsafety, functional academics–writing, reading,arithmetic, leisure time and work.

The manual includes instructions for use.

The checklist and the activity cardscontaining suggested activities have been field

tested extensively with parents, special educatorsand other professionals in different parts of thecountry.

Behavioral Assessment Scale for Indian Children withMental Retardation (BASIC-MR)– Peshwaria andVenkatesan, 1992, (NIMH)

• Though designed to elicit systematicinformation on the current level ofbehavior in school going children withmental retardation, in age group 3 to 16(or 18) years, the teacher may find thescale useful even for older individualswith severe retardation.

• Relevant for behavioral assessment, thescale, field tested on a select sample, canalso be used as a curriculum guide forprogram planning and training based onthe individual needs.

BASIC MR

The scale has been developed in two parts,BASIC MR, Part–A and BASIC MR, Part-B.

• PART-A consists of 280 items groupedunder seven domains— motor, activitiesof daily living (ADL), in motor,language, reading–writing, number,time, domestic, social and pre-vocational.

• PART-B consisting of 75 items groupedunder 10 domains, that is, violent anddestructive behaviors, temper tantrums,misbehavior with others, self-injuriousbehavior, repetitive behavior, oddbehavior, hyperactive behavior,rebellious behavior, anti-social behavior,and fears, helps to assess the current levelof problem behavior in the child, alonga descriptive scale, namely, independent,cueing, verbal prompting, physical

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prompting, totally dependent and notapplicable, each scale awarded a scoreof 5 to 0 in that order.

• Test administration of any item withinany domain can be stopped after fiveconsecutive failures by the child. Therest of the items should be scored ‘0’. Insuch cases, maximum scores possible forthe child in each of domain is 200.

• The child is rated on each item of Part-B along a descriptive scale, namely, 0 for‘Never’, 1 for ‘Occasionally’ and 2 for‘Frequently’ based on three levels ofseverity and frequency.

Functional Assessment Checklist for Programming–NIMH (Narayan, Myredi, Rao & Rajgopal, 1994)

• Each of the seven checklists is addressedto different levels of the child’sfunctioning, namely, pre-primary,primary-I, primary-II, secondary pre-vocational-I, pre-vocational-II and caregroup.

• At each level, selected carefully andwritten objectively, excepting care group,the checklists cover a broad domain ofskills, such as, personal, social, academic,occupational and recreational.

• When a child achieves 80% success at agiven level, promotion to the nexthigher level considered.

Each item on the checklist is ratedalong a descriptive scale namely, yes (+)means the child performs the item withno help, occasionally cueing (OC),verbal prompting (VP), physicalprompting (PP), no (-) meaning one hasto completely support the child in theperformance of the task.

• Teaching goals and objectives setquarterly (once in three months) and theprogress evaluated at the end of eachquarter, the checklist provides forperiodic evaluation.

• This checklist has a high correlation withthe Madras DevelopmentalProgramming System.

The Portage Guide to Early Education

Designed in 1975, as a home basedintervention program for pre-school children aged0-6 years with developmental disabilities, itprovides a flexible model for early intervention byinvolving parents and families in the education oftheir child.

Dissemination in India –The Jamaica Adaptation

The Jamaica adapted Portage Guidedisseminated in 1986, at NIMH, Secunderabad(M.Thorburn), was found culturally loaded.Hence, a programming system, suited to the Indiancultural milieu, was developed by aninterdisciplinary team of experts.

Curriculum Based Assessment Checklist (MRIH),Kolkata, 2000

It was developed to help parents andprofessionals make curricular decisions for thoselearners for whom a portion of their program mustbe devoted to direct instruction in the communityliving areas.

The checklist contains 17 domains for differentlevels of mental retardation. These are, Motor, Self-help Skill (ADL), Language, Cognition, Safety,Health, Physical Fitness, Pre-Vocational,Vocational, Reading, Writing, Arithmetic, Money,Time, Social play, Recreation.

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The full scale of the checklist consists of ninedomains which contain core skills. Eight other skillareas are grouped into five performance levels (Pre-Primary, Primary, Secondary, Pre-Vocational andVocational).

Thakhur Hariprasad Institute (THPI), Hyderabad,Diagnostic Record for Persons with MentalRetardation

This comprises the following:

• Social work related information, medicalhistory which includes pre-natal, peri-natal, post-natal information.

• Special Education Assessment isconducted using the list of activities asin 1983.

• AAMR definition from gross motorfunctions to vocational skills.

• Psychological Assessment, CognitiveVocational Abilities, Behavior Problems,Speech and Language Assessment,Speech Communication-verbal andnon-verbal, Gessel Drawing Test, SeguinForm Board, Colored ProgressiveMatrices, Standard Progressive Matrices,Binet-Kamath Scale, Vineland SocialMaturity Scale, Malin’s IntelligenceScale for Indian Children, Bhatia IQTest, Koh’s Block Design, DenverDevelopmental Screening Test.

An interdisciplinary team of experts give theirinputs using their own assessment system.

Individualized Educational Plan (IEP)• The main purpose of IEP, evolved and

implemented in the Madras Project(1968, Balavihar), is to provide ageappropriate and need-based educationand training to every child with mentalretardation.

• IEP is developed by a team of expertsand parents to provide persons withmental retardation appropriateintervention.

• The components of IEP are anassessment profile, target behavior to beachieved every quarter and theevaluation records maintained.

• This was the precursor to the IEP whichemerged in the current format in 1975and a revised version in 1977.

• The IEP format, gazetted in theGovernment of Tamil Nadu SpecialEducators’ curriculum, was put to use.

Rehabilitation Council of India Recommended ToolsThe Rehabilitation Council of India (RCI)

recommended tools for IEP and IFSP.

The popular and most used programmingsystems in the country are:

• The Madras DevelopmentalProgramming System (Vijay HumanServices).

• Upanayan Early InterventionDevelopmental Programming System(Madhuram Narayan Centre forExceptional Children).

• Functional check list (National Institutefor the Mentally Handicapped).

These tools are adequate, complete,individualistic, and inter-disciplinary in theirapproach.

Individualized Education Plan (IEP)–Flow Chart

The IEP a sequential process for makingdecisions regarding the program of managementof persons with mental retardation, is essentiallyan assessment process for teaching, popularly

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known as criterion referenced scale. With an in-built system for periodic assessments andevaluations, it helps the planners to arrive at acomprehensive picture of an individual’sperformance level in adaptive behavior, an areaoften neglected in the traditional method of“treatment planning”.

The entire process of program planning canbe visualized in the flow chart (Bock andJeyachandran, 1975) shown in Graphs 1 & 2.

Assessment, the first and a necessary step inthe entire system, is followed by designing theindividualized program plan which includes settinggoals and objectives.

After quarterly evaluation, new goals andobjectives are set as needed, the entire process tobe repeated annually.

The Interdisciplinary Team

Since many persons with mental retardationalso have associated problems, the expertise ofseveral professionals is necessary to provideeffective programs using the skills of theinterdisciplinary team. The special educator playsa pivotal role.

The most commonly involved membersbeing the special educator, psychologist,physiotherapist, occupational therapist, speechtherapist, social worker and paediatrician. The teamalso includes the trainee, his parents and the referralagency, all participating in the program planningactivities.

Though each member of the team has aclearly defined function, all of them work together.

Program planning is a good practice,irrespective of the “tools” or “instruments”employed.

MDPS Behavioral ScaleIn the MDPS Behavioral Scale, the

behavioral assessment instrument is designed toprovide objective and sound information about thefunctional skills of the assessee for purposes ofprogram planning.

Assessment data are presented in a graphicform on the Behavioral Profile for use by theinterdisciplinary team.

Formats: The priority goals and objectives setby the team based on individualized assessment arerecorded on the Individualized Program Planforms, that is, the Priority Goal Statement Formand the Quarterly Program Plan Forms.

Record of Progress: The quarterly progress canbe recorded, both numerically and graphically, inthe profile format in which the individual’sachievement is shown for each quarter with distinctmarkings on the selected objectives. This facilitatesa comparison between the initial assessment andthe quarterly evaluations.

In the Individualized Program Plan form(Quarterly Program Plan Form) weekly progressmay be recorded.

When completed, the tabular form will givea clear, consolidated picture of the progress madeby the individual in regard to the objectives selectedfor the quarter.

On the Problem Behavior Assessment Form, adescription of the problem behavior can berecorded. A few of the frequently observedproblem behaviors is also given.

In summary, the component parts of the IEPinclude:

• The Behavioral Scale –an assessment tool.

• The Behavioral Profile with space torecord the quarterly progress and theidentifying information.

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• The Individualized Program Plan Formsinclude the Priority Goal StatementForm, the Quarterly Program Form andthe Problem Behavior Assessment Form.

Adaptive Behavior Assessment Kit (ABAK)Adaptive Behavior Assessment Kit (ABAK)

Steps in Individualized Program Planning

Step I Assessment Step II Individualized Program Step III Evaluation

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overall goals set

for him?

What are the

specific methods

to be followed to

help the child?

Has the child

achieved the

activities set

for him?

which uses the materials available in the classroomand at home, can be used wherever simulation isnecessary for assessing an individual.

The material in the kit is established to get avalid and reliable profile of the individual (Vimala,Kumar, Jeyachandran, 1983).

Graph 2: Program Planning

Road map for program planning

The diagram below illustrates the steps involved in program planning

STARTING POINT DESTINATION

ACTION

BEHAVIOURALASSESSMENT

INDIVIDUALIZEDPROGRAM PLAN

EVALUATION

255

As seen above, the goals and behavioralobjectives are set, based on the assessment. Everyskill is task-analyzed into small sequential steps.All these steps in ‘Task Analysis’ are translated intoconcrete lesson plans.

Problem Behavior Assessment

Persons with mental retardation showdeficits in adaptive behavior. Hence, training themto overcome the limitations in adaptive behavioris the primary aim of any individual working withpersons with mental retardation. A few of themalso have problem behavioral posing challenges tothe educator.

Problem Behavior – Its Identification

A problem or a challenging behavior in theindividual interferes with his acquiring new skills,or strengthening old skills or it interferes insomeone else’s activities. The behavior may beharmful to himself or may causes harm ordisrespect to others.

Behavior ModificationOnce the problem behavior is identified,

steps should be taken for its elimination/modification. However, the educators shouldremember that in a developing person, their

primary aim is to develop his activities of dailyliving wherein inappropriate behavior modificationbecomes simple.

Individualized Program Planning in a ClassroomSetting (Group Teaching)

The individualized program plan can beeffectively carried out in a classroom set-up for fiveor six persons as a group in a class room set up bya special teacher.

GroupingGrouping the persons with mental

retardation homogenously for purposes ofeducation/training could be based on theassessment made on the standard scale.

The groups are as follows:

Pre-Primary, Primary, Secondary andPre-Vocational

• The grouping need not necessarily be aheterogenous one either. The educatorneeds to work on the selected skillsrelevant to the group in which theindividual is placed.

• The grouping can be shown in theBehavioral Scale and in the BehavioralProfile Form. When the assessedindividual achieves independent

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 willhold button with thumb and index 8/10 times within a period of observe the child’sfinger. three months dressing to determine

the degree to whichthis objective has beenachieved.

256

performance (80% level) level, he isready to be moved to the next higherlevel for training.

• However, there cannot be rigidity ingrouping. Allowances must be made forminor variations. For example, anindividual may not progress infunctional academics, such as, reading,writing despite training for more thantwo years, but learns other skills. In suchinstances, he can still be moved to thenext level by making allowances to hisnon-achievement in functionalacademics.

This will help the teacher to give age-appropriate training.

Similar situations may also occur where theindividual may have motor or other associateddisabilities.

EconomyIt takes an average of 55 minutes only to

complete an assessment on the individual if boththe parent and the teacher are knowledgeable ofthe items in the scale and also have clearinformation on the child’s behavior (activities).

A well planned time table is essential for thesuccess of the individualized program plan in agroup set up.

Time TableAfter assessment, depending on the child’s

age, level and associated conditions, the goals(5-10 in number), are set for each child in the class.The activities in the first three goals to be achievedshould be repeated twice a day, in a specialeducation set up and the others, once a day.

Provision should be made in the day’s timetable for music, games and craft work.

Children of the same age group, but withdifferent performance levels within the same goalareas, may be grouped together for a learningactivity. They will learn the different selected skillsin the respective domains, based on the currentlevels of performance of each individual.

However, the goal areas may also be different,especially after the first quarter; the priorities mayvary depending on individual achievements andrequirements.

Grouping children based on the range ofactivities in which they need to be trained willenhance effective implementation of theIndividualized Educational Program System in aclassroom.

The time allotted for the goal areas selectedfor each individual, the objectives selected for eachof the goal areas based on the IndividualizedProgram Plan and the intervention strategiesdecided upon are displayed in the time table.

Assessment in Special Education

In an All India Seminar on Assessment inSpecial Education - MR (MRIH - USEFI, 2001)recommendation for a Multidimensional Modelof Assessment was made with a series of operationalrecommendations. This has been implemented.

Multidimensional assessment refers to acomprehensive and integrated evaluative approachthat employs multiple measures, deriving data frommultiple sources, surveying multiple domains andfulfilling multiple purposes.

Use of multi-measures provides a broader baseand a more valid method for assessing childrenwith developmental disabilities.

Diagnostic batteries that combine normbased, curriculum based and clinical judgment

257

based scales, help achieve the greatest probabilityof accurately describing and prescribing thecomplex needs of children with multipledisabilities.

Information from Multi source, i.e., fromseveral contexts (home, school, clinic) and sources(parents, teachers, therapists) is gathered. Thisrequires interdisciplinary, ecological, interactionaland environmental assessment.

Multi domain assessment refers to the use ofinstruments that examine the child’s capabilitiesand deficiencies within and across severaldevelopmental and behavioral areas or processes.

In multi purpose assessment, besides cognition,domains like social competence, communication,self-care, play, temperament, self-regulation,attention, emotional expression and copingbehavior, are included.

Suggestions Made by USEFI Seminar forDevelopment of Assessment Tool forIdentifying, Classifying Persons withMental Retardation

• Using a process oriented assessment tool(planning, attention, simultaneous,successive processing) Das et. al. (2000)instead of IQ Test (MR, L.D., ReadingDisability).

• Clinical psychologists working inorganizations of disability trainingresearch/NTs to take up adaptivebehavior scales suitable to our cultureand life (translate to regional language)and validate the schedule.

• Adoption of completely uniformprocedure of testing, laying down testercharacteristics for all institutions,including ethical considerations.

• Learning potential assessment device(LPAD) in content areas, in the patternof achievement tests for different levels/classes, is to be developed.

• Development of clinical diagnosisschedule and procedure involvingNational Institutes and other leadingNon-Governmental Organizations.

• Adoption of information schedule forfamily data and ecological conditions.

• Evolving guidelines for drawing profilesin terms of developmental milestonesand points of intervention.

• Evolving an outline of an assessmentreport–what and how it can bemeaningful to parents/special educators.

ConclusionMany persons with mental retardation also

have associated problems. The services to theseindividuals must be rendered using the professionalskills of the interdisciplinary team whose membersmay also be made available on a consultative basis.

The team should be involved in identifyingthe individual’s needs and in designing programsto meet them. The individual, his family and thereferral agency also form part of theinterdisciplinary team. Each member of the teamshould utilize the skills, competencies and insightsthat his/her training and experience provides, butthey should work together as a team withoutimposing constraints. The special educator plays apivotal role in the interdisciplinary team.

The members of the team should alwayswork together with the child as the main focus.

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Chapter 6

Array of Services for Persons withMental Retardation - Quality Services

However, there is a need for rules andregulations in the provision of standardized servicesand accountability.

An outline on the available of services is givenbelow.

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 onlyCounseling 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 improvedVolunteers. awareness on its

importance inprevention.

Action Plan:

i. Concerted effort increating awarenesson the need forgenetic counseling andon how to seek theservices for counselingand diagnosis.

ii. Services at the districtlevel to be set up, forbasic needs with a tieup with hospitalswhere diagnosticservices are available.

Introduction

With the implementation of Persons withDisabilities Act, 1995, an array of services

for persons with mental retardation is now availablein the country.

Efforts towards a process of normalization,integration, and inclusion have already shownresults in the right direction.

259

Prenatal care • Prenatal Careincluding Malnutrition –Nutrition and Early in pregnantDetection mothers/ weaning

child

Of the possible 100million pre-schoolchildren, 3 to 4million suffer fromsevere forms ofmalnutrition. Nearly1 million die ofstarvation every year.(The Feeding and Careof Infants and YoungChildren,Dr. Shanthi Ghosh,VHAI, 1992).Early detection andcorrection ofmalnutrition notavailable 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-natalinvestigations; Well Baby Clinics. Other Medical Professionals clinics.Genetic Disorders, (relating to mother-child i. LackadaisicalChromosomal health), Researchers – attitudes of someAnomalies, Scientists; Health Care medical personnel.Metabolic workers, Nurses, Lab ii. ImprovedDisorders; technicians, Counsellors. awareness on theScreening- need for periodicNutritional checkups.deficiencies in diet

Timely immunization Action Plan:

Counseling on avoiding i. Sensitising medical/toxic substances. para medicalFollow up on professionals on the“ high risk” neonates. nature, causes andTracking “high risk” management ofmothers. disabilities throughRoutine medical care. periodic workshops

Array of Services Organizations Service Providers Remarks

260

updating them withscientific information.

ii. APGAR Score to betaken for every newborn and reportedto parent; awareness onthe need for corrective/preventive action.

Early detectionfacilities to be madeavailable with a tieup with geneticresearch labs andnetworking withthem - geneticmetabolic disorders/chromosomalanomalies.

Media disseminationof information on typesand causes ofdisabilities.

Message on:iii. Prevention, every

day at primetime.

All hospitals tocompulsorily introduce ascreening system for‘high risk” mothers andchildren.

1 (b). Prevention Observations:(Psychological) Improved awareness in

• Early detection for Early Intervention Centres, Parents/foster/adoptive/ parents and the generaldefects, Child Care Agencies/Creches, surrogate Special Educators public thatimpairments, Social Service Units; Child Care Teachers/Aids Social disabilities detecteddisabilities. 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 withfor developmental timely intervention.delays and pre-vention of secondarydisabilities.

Array of Services Organizations Service Providers Remarks

261

Action Plan:

i. Dissemination ofinformationthrough posterspamphlets/workshops at allcenters/ PHCs/Agencies.

ii. Establish earlyintervention unitsat all the locationsmentioned above,for training.

iii. More awarenessneeded.

iv. Rural –ignorance:urban- societal/professionalunsupportiveattitudes

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, inCreche, Care Workers. isolation, not

holistically.

Action plan:i. Need for an inter /

multi disciplinaryteam approach/action.

ii. Field workers toundergo periodicrefresher coursesto update on relevant,scientific information

iii. Awareness on and needfor timely andcorrective surgery to becreated.

• Medical-MedicationSurgery Hospitals, Special Diagnostic Medical Specialists, Facilities to be made

Clinics, Early Intervention Practitioners - Pediatricians, available. Funding forCentres, Child Guidance Clinics Neurologist, Psychiatrists, those who cannot

Surgeons and other specialists afford.

Array of Services Organizations Service Providers Remarks

262

• Therapies-Physio, Public Health Centres, Infant Therapists: Psychologists, Observations:Occupational, Stimulation/Early Intervention Physio, Occupational, Speech, Therapists working atSpeech: where Centres/Homes, Child Special Educators, Teacher tandem with specialneeded. Development Centres Aides, Social Workers, Parents, educators.

• Sensory Stimulation, Creche Care Givers, Nursery Action Plan:Training and Special School Teachers, Psychologist i. Need forEducation in Motor Physiotherapist Occupational coordination in(Gross and Fine), Therapist, Speech Therapist, services.Language and Social Workers. ii. Need forCognitive introducingDevelopment, mainstreamSelf-Help (feeding, teachers to the areadressing, toileting, of disability and thegrooming) and services needed inSocial Interaction. them.

• Corrective: Aids andAppliances, as andwhen needed

Residential NGOs Care Givers Homes, Parent, Foster Parent Group, Observations:Community Homes, Small Home Parent Need for homes for theGroup Homes, Respite orphans and destitutes,Care/Medical Support Clinics; multiple handicappedPrimary Health Centres children.

Action Plan:Need for accreditationfor such homes and aneed for follow up forimprovements andmaintenance of therequired standards withsufficient 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 Servicescare/parent and formation oforganisations, Federation of servicesocial 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 servicesinter-disciplinary Service Organisations. due to lack ofservices as needed. awareness on the needHelping parents to and availability/become “advocates” financial affordability.for their childrenThe above mentioned Array of Services is preparatory to the school stage entry and beyond.

Array of Services Organizations Service Providers Remarks

263

School Age

SCHOOL AGETraining and Schools, Specials, Inclusive Special Educators, Special Observations:Education as in Education Schools, Vocational teacher helpers, psychologists, i. Insufficientpre-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 onliving. “inclusion”.

• yoga. iv. Poor infrastructural• music. resources.• dance/movements. Action Plan:• art crafts. Coordination in• other therapies. pooling/sharing

resources withMinistries of HRD,Social Justice andEmpowerment, &Health.

• ResidentialAs 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 offor persons of different behavioural problems. specialists. sufficient number ofcategories and age trained /committedlevels. professionals ready to

work in the field.

Action Plan:

i. Forming a resourcepool of availablepersonnel,registered with RCI.

ii. Introducingtraining courses inmanagement ofresidentialhomes.

iii. Standardisation andaccreditation.

• Recreational Community Parks/ Centres, Recreation Planner Groups, Observations:Recreational Programmes, Social Workers and Volunteers i. More need forSpecial Recreation Centres barrier free,and Special Olympics. safe environment

Array of Services Organizations Service Providers Remarks

264

ii. Volunteers availableonly in few places.

Action Plan:

i. Awarenesscampaigns thatpersons withdisabilities alsoneed recreationalfacilities.

ii. Providing morerecreationalfacilities

Coordination andadvocacy Observations:

• As in pre-school years As in pre-school years As in pre-school year. The PWD Act yet to bebut with special implemented in itsemphasis on the reality.assurance of education Action Plan:as a fundamental right Implementation of thebe provided by the PWD Act, RCI Act andschools. 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 andtraining, competitive industry locations, offices, sheltered workshops facilities foremployment, sheltered workshops, vocational (Administrators/Work employment.sheltered employment. rehabilitation centres, farms, evaluators, supervisors and ii. Public awareness

animal husbandary units, instructors). and the confidencecottage industrial units at a low level in

the employer torecruit personswith disability evenwith training.

Action Plan:i. Awareness program

on the need foracceptance ofpersons withdisabilities at theworkplace.

ii. Implementation ofthe reservationpolicy to includejobs/identifysuitable jobs forpersons withmental retardation.

Array of Services Organizations Service Providers Remarks

265

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 communityproviding continued participative projects.training in basic selfcare skills andactivities of dailyliving, recreationpre-vocational activities.

Educational Schools of Social Work Special Educators, SocialWorkers, Parents,Volunteers.

• Courses on money Care givers, counselors, As in earlier years: plusmanagement. 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 tospecialized residentialfacility for profoundlyretarded

“Support” Service Respite Resources, Personal care “Respite” care givers, personalHome and chore services. care attendants, village level

workers, health workers,noon meal servers, schoolteachers.

Health Medical and Dental Medical Professional

Transportation Subsidised Public transportsystem.

Social and Recreational Organisations and As in early yearsCommunity RecreationResources

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.

Array of Services Organizations Service Providers Remarks

266

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

Schools

Andaman & Nicobar Islands 18

Andhra Pradesh 248

Assam 12

Bihar 33

Chandigarh 6

Goa 12

Gujarat 112

Haryana 24

Himachal Pradesh 10

Karnataka 110

Kerala 162

Madhya Pradesh 48

Maharashtra 178

Manipur 4

Meghalaya 4

Mizoram 3

New Delhi 61

Orissa 56

Pondicherry 24

Punjab 12

Rajasthan 27

Tamilnadu 258

Tripura 4

Uttar Pradesh 54

West Bengal 69

TOTAL 1579

Name of the State No. ofSchools

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 MentallyHandicapped (NIMH) Survey. Schools under the Sarva Siksha Abhiyan (SSA) inclusive program are notincluded.

ConclusionOver the past two decades, the parents and

caregivers have become more and more aware ofthe need for services for their wards with mentalretardation. Trained professionals have also becomemore available now.

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Introduction

Manpower Development Programs

Programs in manpower development which arebeing implemented are: long duration courses,

short term programs, and workshop/orientationprograms, orienting to professionals in awarenessof the needs of persons with disabilities of differentpersonnel.

In 1992, the manpower development andtraining programs were brought under the purviewof the Rehabilitation Council of India, a statutorybody.

Chapter 7

Manpower Development andSpecial Teachers Training

As per the RCI Act, Section 11, it is amandatory requirement for all universities andinstitutions intending to offer training courses inthe field of disability rehabilitation to seek RCIrecognition before the commencement of thecourse.

So far, 125 institutions have been grantedrecognition by RCI to run courses in specialeducation for the persons with mental retardation.

The Manpower Report (1996) prepared byRCI had projected that about 0.36 million personswould have to be trained during the Ninth Planperiod.

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

S. Status Disability 1947 2007No.

1. Number of service providing organizations 3 2010for 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 (includingrehabilitation)

(Continued)

268

5. Services AvailableEarly Intervention

• Home Based None Available all over the• Centre Based country• School Education None Well structured need

Special Schools based residentialIntegrated Schools homesInclusive SchoolsTransition 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 withDisabilities Act,1995; National TrustAct, 1999

Training ProgramsIn 1993, when RCI Act came into effect, the

number of training courses and institutes stood at22 and 25 respectively. RCI recognized institutions,17 years later, for offering courses at Certificate,Diploma, Bachelor, Masters, M.Phil, etc., number350.

Out of 120 short and long term coursesdeveloped so far, 56 courses of 1 year duration ormore, are operational in the country, turning out,annually, more than 5,000 rehabilitationprofessionals in conventional classroom setting andB.Ed. in special education in the distance mode.Some of these trained professionals are in demandin the developed world also.

Training institutions for the special educatorsrose from nil to 70. Training has made possible theinclusion of trained experts in speech, vocationaltraining and physiotherapists as members of theinterdisciplinary team in drawing up individualizedprogram plans. The modes of training are

structured, systematic and simple in application forhome based, centre based early intervention, forprograms in special schools, integrated, inclusivesettings, transit schools, vocational activity centres,community based programs and residentialprograms.

Rehabilitation Council of India

RCI—Categories of ProfessionalsUnder the Act, sixteen categories of

professionals dealing with various disability areascome under the purview of the RCI fordevelopment and standardization of their trainingcurricula, development of training norms andguidelines, regulation and monitoring of traininginstitutions conducting these training programs.Also coming under the purview of RCI isregistration of trained professionals and promotionof research in related fields.

In the area of mental retardation, trainingprograms for teachers rehabilitation professionals

S. Status Disability 1947 2007No.

269

recognized by the RCI and conducted by thenational institutions, universities, NGOs, etc. are:Diploma Courses in Special Education (MentalRetardation) and D.S.E. (M.R.), B.Ed., and M.Ed.in Special Education, and Bachelor’s degree inMental Retardation, Bachelor ’s degree inRehabilitation services.

Courses/Programs Developed by RCI

Forty Five Days Foundation Course on DisabilityRCI has developed a 45-day training

program, a foundation course, which includes fiveareas of disability: mental retardation, hearingimpairment, visual impairment, learningdisabilities and locomotor impairment, with theintention of giving knowledge, skills, attitudes andinstructional teaching techniques to the teachersof primary schools in the District Primary EducationProgram (DPEP) to handle the disabled childrenin the regular schools.

The Bridge CourseThe RCI Act stipulates that all those

delivering services to persons with disability mustpossess RCI recognized qualification and also beregistered with it. Failure would result inprosecution. The scheme (covering the five areasof disability and mental retardation, cerebral palsy,learning disability, autism and attention disorders)for offering a Bridge Course was devised as a meansto overcome this problem, a one-time measuredesigned to assist the professionals working priorto 1993 in the field of rehabilitation, but did nothave qualification recognized by RCI nor registeredwith it earlier.

The Bridge Course launched by RCIthroughout the country, 21 centers were recognizedto run the program for persons with mentalretardation.

National Programs on Orientation

RCI also launched a National Program onOrientation of Medical Officers working inPrimary Health Centres to Disability Management.Fully funded by RCI, it was planned to train about18,000 Medical Officers through selected agencieslocated all over the country.

Continuing Rehabilitation Education ProgramRCI requires that the registered professionals

undergo CRE programs, for a total period of 16days within a span of five years from the time ofregistration.

Manpower Required

RCI has developed a schedule for manpowerdevelopment for the type of professionals whowould work in the field of disability and inparticular in the area of mental retardation with anestimate (projected) which has been presented inTable 7.1 in the previous volume, Disability StatusIndia, 2003.

In view of the fact that the estimates preparedearlier for the five-year plan periods was not basedon any empirical study, RCI has hired the servicesof the Institute of Applied Manpower Research,New Delhi, a professional institute under thePlanning Commission specialized in undertakingsuch studies to develop a methodology to arrive atmore realistic estimates based on scientificprinciples.

Manpower in the Field of Mental RetardationThere is a wide gap between the need and

the supply of professionals, between theprojected figures (2003) and the number ofprofessionals actually working in the field ofmental retardation.

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Number of Professionals Actually Working in theField of Mental Retardation

The information is provided in a tabularform in the section on Mental Retardation in theprevious volume, Disability Status India, 2003.

Other Efforts in Promoting HRDPrograms in the Country

NCERT–Initiative in Special Education TeacherPreparation

In 1983, the National Council of EducationalResearch & Training (NCERT) included educationof children with special needs as an area of serviceunder its teacher education program. The firstNational Workshop on Special Education wasorganized by NCERT in March 1983.

UGC–Scheme for Special Education TeacherPreparation

In 1985, the UGC encouraged universitydepartments and colleges of education in thecountry to start teacher preparation programs toeducate children with special needs for which 100per cent financial assistance was provided. TheUGC has introduced TEPSE (Teacher Preparationin Special Education) scheme wherein assistanceis given to Universities and Colleges of Educationto start B.Ed. or M.Ed. Special Education programsto prepare special teachers.

Present Status of HRD in the field of Mental Retardation RCIRecognized Training Institutes / Universities & TrainingPrograms Courses Specific to the Area of Mental Retardation.

Course Duration(years)

Diploma in Special Education(Mental Retardation) [DSE (MR)] 2

Diploma in Vocational Rehabilitation(Mental Retardation) [DVR (MR)] 1

Diploma in Early Childhood Special Education(MR) [DECSE (MR)] 1

P.G. Diploma in Special Education (MR)[PGDSE (MR)] 1

B.Ed. (Special Education) – Mental Retardation 1

M.Ed. (Special Education) MR – 1

Though there are six types of coursesoperational at 79 institutions in the field of MentalRetardation, other courses like M.Phil & Certificatecourses in Clinical Psychology, M.Phil & PGDiploma courses in Rehabilitation Psychology,Diploma courses in CBR & MRW, Bachelor &Diploma courses in Rehabilitation Therapy,PGDDRM, and PG Diploma in Early Interventiongive sufficient coverage to mental retardation inaddition to other disabilities.

Non-Governmental OrganizationsNon-Governmental Organizations con-

tribute significantly to human resourcedevelopment without any substantial funding fromthe Government. An outstanding example is theThakur Hari Prasad Institute of Research &Rehabilitation for the Mentally Handicappedestablished in 1968.

Manpower Development in Teacher-Training Programs in Mental Retardation

NIMH and its Regional CentresThe NIMH and its regional centres conduct

refresher courses, training workshops andcontinuing education programs for theprofessionals apart from full time courses at variouslevels.

Parent Training ProgramsNIMH had initiated and conducted training

programs for groups of parents. The intention inthis model is to empower the parents and familymembers to look after their children with mentalretardation as against providing expensiveinstitutional support or residential programs.

271

This unique program initiated by NIMH isbeing followed by many NGOs.

Distance Education

B.Ed. (SE-DE) Special Education Distance ModeProgramme

Madhya Pradesh Bhoj (Open) University, BhopalUnder an agreement with the RCI, the

Madhya Pradesh Bhoj (Open) University haslaunched B.Ed. (Special Education) throughdistance mode for training special teachers.

Those candidates with a Bachelor’s degreefrom any recognized university having two years’experience in any disability area in a standardinstitution are eligible to apply, preference beinggiven to persons with any disability.

Indira Gandhi National Open University(IGNOU)

As per MoU signed by RCI with the IndiraGandhi National Open University (IGNOU), anumber of courses have been launched throughdistance mode.

The Distance Education Course have beentaken up by the States of West Bengal, Gujarat,Maharashtra, U.P. and Tamil Nadu.

The Ministry of HRD, Government ofIndia

The Ministry of HRD, Government ofIndia in its efforts to incorporate special educationin the curriculum of regular school teacher trainingprogram, is modifying both pre-service and in-service training programs to incorporate specialeducation component into the curriculum. Manypre-school teacher-training programs have alsoincluded “Education of exceptional children” intheir curriculum.

Extension Programs for Professionals andGrowth of Functionaries IncludingParents

Both the government and the voluntaryorganisations are involved in the extension servicesof training the trainers of children with severedisabilities. Crash orientation seminars andworkshops are organized for teachers of generalschools on different aspects of special education.

The NIMH, Secunderabad and its regionalcentres, the SNDT Women’s University, andMIND’S College of Education, leading NGOssuch as THPI, Amarjyoti, MRIH, CHETNA,Deepshika, are running a number of programs.

These demonstrate the coverage, andcontinuous awareness and professionaldevelopment through exchange, participation,deliberation contributing to the holisticdevelopment and rehabilitation of persons withmental retardation. These programs planned year-wise, are of very short duration.

ConclusionFuture perspectives in the HRD programs

in the rehabilitation of persons with mentalretardation.

In a span of sixty years, India has increasedits manpower resource by more than 100 times.

Apart from teacher training, parents’ trainingprogram, sensitization programs for Panchayat,Block and District level functionaries need to betaken on mass scale with the support of differentMinistries.

To enhance human resource developmentstudies on need assessment for identifying numberand types of rehabilitation personnel required, theirplacement, role, job analysis, determination ofminimum salary, etc., must precede the launching

272

of new training courses. Information elicited woulddetermine the curriculum, its duration, coursecontent, etc., to prevent wastage of time and effort.

Impact and research studies need to beconducted to gauge the usefulness of ongoingprograms by involving stake holders such as clients,family members, employers, professionals, andfaculty members.

Studies conducted on comparative analysisof training programs available in India anddeveloped countries will help adoption of relevantcontent areas suitable to local needs.

To improve the training programsqualitatively, infrastructure in the traininginstitutions must be augmented.

Refresher and orientation programs need tobe made compulsory for the in-service andpracticing rehabilitation professionals.

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Chapter 8

Teaching Process and Materials forChildren with Mental Retardation

Introduction

Over the past two to three decades in Indiaand overseas, there has been a shift in the

teaching process. With the individualized programplans tailor-made, the child with mental retardationhas become an active learner.

This programming system fixes the onus onthe teacher: “If the child did not learn, where hasmy lesson plan failed?”

Effective MethodsA few effective teaching methods are

described briefly.

The Montessori MethodMaria Montessori’s multisensory approach

came to stay, initially in Chennai and later, all overIndia. The scope of teaching children with mentalretardation was later enlarged to include normalchildren.

In following the multisensory approach,besides hearing and vision, other sensory modalitiesare also utilized, the tactile sense being dependedon much, with focus on children in the pre-schooland school stages.

Discrimination among weights, colours,sounds, and so on was reinforced to aid inexercising the children’s judgment and reasoning.

The Project Method–John DeweyJohn Dewey’s ‘Project Method’ envisages a

wholehearted and purposeful activity, carried onin a social environment. A significant landmark inthe history of methodology of education, Dewey’smethod implies the principles and fulfills theconditions of a good learning process. Kil Patrickhas enunciated this method.

Play-way–Active Participation Method–Caldwell–Cook

Cook, the first person to advocate “way ofplay” for educating the child. Regarded play as ameans of training individuals as individuals, awonderful technique of making school educationinteresting and practical.

Teaching Persons with MentalRetardation Using Behavioral Approach

Teacher-centered process giving way to achild-centred one, has influenced the area of specialeducation with emphasis on the IndividualizedEducation Program (IEP) planning for childrenwith mental retardation. Along with individualizedinstruction, the teaching strategies introduced arecooperative learning, peer tutoring, computer-aided learning (CAL), multi-sensory teaching andclinical-diagnostic teaching.

Procedures–IPPThe individualized program plan (IPP) is

based on assessing a person and evolving a baselineat the point of entry into the program, setting goalsand objectives in the order of priority andconverting the goals and objectives into concrete

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lesson plans which include the teaching steps, theplanning strategies for use, the material selectionand finally, evaluation.

Behavioral TechnologyAlthough behavioral technology principles in

all cases not only ticked to certain model ofteaching, but also incorporated the principle oftask analysis, condition of promoting learning inspecial integrated setting.

At the National Institute of MentallyHandicapped (NIMH), Peshwaria and Venkatesan(1992) developed the “Behavioural Approach inTeaching Mentally Retarded Children” which hasbeen tested in class rooms and at homes. Parentsand teachers can develop programs suited to thespecific needs of an individual child.

The teacher is also acquainted first with thebehavioral assessment of the person with referenceto the current level of functioning, and the currentproblem behavior/s.

The teacher must then assess each child’sperformance rather than its deficiency, that is, whathe can do rather than what he cannot do.

The behavioral assessment tools available inIndia are: MDPS, NIMH assessment schedule,Functional assessment tools, and problem behaviormanagement system (NIMH).

While teaching, the teacher has to identifyand analyze problem behavior and use behavioraltechniques to manage the same. The details aregiven in the manual and the teacher has to gothrough the orientation. Studies done by Narayan,Peshwaria, and Myeredi support its effectiveness.

Even though research studies prove theeffectiveness of the Behavioral Approach,evaluating on that basis is not yet practiced at everyteaching institution.

Curriculum–Diploma in SpecialEducation Curriculum and TeachingManual

Teaching strategies and programmingconsideration given below are being followedsporadically in some special schools.

Teaching Strategies and Programming Considerations

Success in educating profoundly and severelyhandicapped persons require extensive knowledge,a broad range of professional skills, and a positiveattitude. Required also is individualization. A senseof humor always helps.

Since a successful approach on a day mightbe the antecedent for a behavioral problem onanother, it is important to have a variety of teachingstrategies in one’s instructional repertoire.

Instructional Programming andOrganizational Strategies

Normalization Considerations

Age appropriateness: Selected instructionalmaterials and activities must be suitable for non-handicapped individuals of the same age and thosereflecting the student’s cultural and ethnicbackground as well as the cultural diversity of hissociety. Age-appropriate reinforcement must beused.

Help the student to look and behave asappropriately as possible as those deviant getstigmatized. Involvement in activities with non-handicapped peers and interest in their welfaremust be encouraged.

Teacher BehaviorRespect the student’s privacy. Use your voice

to communicate, supplemented by gestureswhenever possible. Remain calm and poised no

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matter what. Be familiar with handling assistivedevices used by the handicapped.

Avoid stereotyped judgments. Do not assumethat on account of his handicap, a person is unableto acquire some skills and/or not participate in someactivities and events. Assign the student a classroomresponsibility no matter how severe his handicapand no matter how small the task.

Show appreciation when there is progress orcompliance with your request which may be a giantstep for the student. A show of warmth, interest,and love will elicit positive response. Flexibility isdesirable in carrying out lesson plans, especially, ifunexpected negative behavior occurs whichrequires immediate action.

Human Resources

Seek the co-operation of other teachers,professionals and support staff. Communityhelpers can assist in normalizing the lives of yourstudents. Train teacher aides, parents, grandparents,and house parents, as agents of carry-over andpractice.

Materials

Use exciting materials and activities fromother disciplines. Use of current materials, toys,games, television shows, and music to motivate thestudent contribute to success. An element ofsurprise, suspense and novelty goes a long way.

Goals

Be realistic in planning goals to avoidfrustration. In selecting instructional targets, futurefunctioning of the child must be kept in mind.

Be sure the student knows exactly what isexpected. Be consistent.

Progress

Provide the student with immediate feedbackof results, i.e., reward him as soon as possible afterhe has attempted, approximated, or achieved a task.Inappropriate or incorrect performance at a task,should be stopped promptly.

Construct charts to demonstrate progress andmonitor required behavior, encouraging those whowant to be a party to the process.

Demonstrate the finished product wheneverpossible. Display the student’s work at schoolexhibits, on bulletin boards, etc.

Instructional Considerations

Change of activities, such as alternating quietones with those involving gross motor actions, willmaintain the students’ interest. If an activity hasseveral steps, practice them in sequence. Physicallyguide the student through an activity wheneverhe is unable to do it by himself, providing onlyenough assistance required to participate in orcomplete a task. Use pantomime, which helps toisolate the required movements, to demonstrate askill.

Tell the student to observe and imitate youractions. Use peer models whenever practical. Userole playing, puppet play and creative dramatics tostimulate real experiences and to practice skills.

Skill Demonstration

Teach a skill at the time of its functional use,i.e., when it occurs naturally.

Due to wide diversity among thehandicapped, personalising instruction is essential.Programming in small steps helps the student tobe successful.

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Instructional GroupingOne-to-one instruction is often not practical

in classrooms. Organize your lessons in such a wayas to take advantage of the benefits of peer tutoringand buddy systems.

Reverse ProgrammingWhen working on some motor skills

consisting of a series of separate motor events,program in reverse. For example, the backwardchaining approach is helpful in teaching the tyingof shoelaces. Starting in the middle of a sequencemay also be appropriate for some students.

Task AnalysisUse a task analysis approach whenever

possible.

Teaching EnvironmentConsider the environment, i.e., the home,

the school, in which the teaching activities are tobe presented.

Use mirrors for visual monitoring, especiallyin observing the movements required to makespeech sounds so that the student can see himselfas he is performing a task.

Disturbing Behavior/s

Substitute a constructive activity whenevera maladaptive behavior, such as a destructive or self-stimulatory activity erupts.

Deviant behavior should be corrected in apositive manner. Say ‘This is the way to play thegame’ simultaneously demonstrating the desiredbehaviour.

Use of reprimands when necessary, can beeffective in structuring behavior.

Remove the disruptive student from the

learning area and place him in social isolation for ashort period of time, explaining the reason for hisremoval. Placing him near other students, rightnext to you, or involving him in a new activity whenhe returns is advisable.

Evaluation1. Evaluation should be a continuous

process. Develop criteria to assess howeffective a particular technique or activityhas been in achieving a desired goal.

2. Whenever possible, and whenappropriate, self-monitoring should beencouraged.

Teaching-Learning Materials(TLM) forPersons with Mental Retardation

It is found in literature that we learn 1.0percent through taste, 1.5 percent through touch,3.5 percent through smell, 11.0 percent throughhearing, 83.0 percent through sight and weremember 20 percent of what we hear, 30 percentof what we see, 50 percent of what we see and hear,80 percent of what we see, hear and do.

Therefore, the teaching learning processshould facilitate active participation of the students.

Since students with mental retardation haveless ability to grasp, maintain and generalize thelearned concepts, extensive use of appropriatelearning material is very much warranted.

For learning to be more meaningful, studentsmust be provided with experiences of manipulatingthe material themselves.

Learning Aids and Functional AidsSpecial teachers use both learning aids and

functional aids. Once the student learns a concept,the utility of a specific learning aid ceases whereasthe same may continue to be used as a functionalaid.

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Teaching Learning Material for Persons with MentalRetardation

The Department of Special Education,NIMH, had undertaken a project on thedevelopment of learning materials, specifically toteach persons with mental retardation. Twelve unitsof hardware material, four work books and fourflip books were developed, designed in a way thatthe same unit could be used with pre-primary topre-vocational level students to teach a specific corearea and across different core areas depending onthe intention of the user. The prototypes were fieldtested and modified.

The same Department also developedsoftware packages on literacy and numeracy underthe project on Computer Assisted Instruction. Incontinuation, development of software packageson Literacy, Numeracy, My Country, Living andNon-living, Health and Hygiene, Sports andGames, Community Utilization is in progress.

TLM should be age appropriate, readilyavailable, prepared from local material, inexpensive,attractive and colorful.

The following points must be borne in mind:

• Teacher should be aware of the hierarchy ofconcept development, e.g., the concept of

color is taught in the stages of matching,identification and naming. Similarly, theconcept of counting meaningfully cannot betaught without teaching one-to-onecorrespondence.

• Concept teaching should be transformed intoa series of joyful, games, e.g., Ludo, Bingo,Treasure Hunt, etc.

Much repetition with variations is required.Different ways to use the same teaching-learningmaterial, in the form of activities and games mustbe thought of.

ConclusionAs per the AAMR definition, persons with

mental retardation require individualized programplan in adaptive behavior. Teaching learningmaterials have to be procured/ prepared for trainingof the target behavior selected.

Individualized program plan, a completeplan, has been introduced in all teaching andtraining programs all over the country. However,its implementation falls short of the thoroughnessand the accountability desired. Social accountingand social audit systems have to be put in place.

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Chapter 9

Parents’ Movement–Involvement

Introduction

In the last few decades, an upsurge in the parent-support groups has been seen so as to initiate,

promote or support rehabilitation services forpersons with mental retardation and their families.

The parents’ movement provides directionto the mechanism of service provisions, bringingtransparency of the available services to personswith mental retardation and their families.

The First All India Conference on MentalRetardation, New Delhi, 1966

The then Prime Minister of India, Smt.Indira Gandhi, said in her inaugural addressdelivered at the First All India Conference onMental Retardation, held in New Delhi onNovember 26, 1966, where many professionals,but a few parents were present: “Without thededication, understanding and cooperation of theparents not much progress could be made. Parentsshould realize that by helping other children theywill be helping their own children.”

A Forum for Expression of Needs ofParents for their Children

At the conference, professionals and parentsof persons with mental retardation and associateddisabilities expressed their difficulties. Inadequaciesin the infrastructural facilities from earlyintervention to independent living, medical care,special education, counseling for parents and socialsecurity for their wards were some of the issues

brought out. Parents felt an urgent need to cometogether to have a clear understanding of thechallenges, to plan strategies to meet them and toshare concerns and experiences, etc.

The realization, in the sixties, on the part ofthe parents to come together has come to be knownas the National Parents Association–Parivaar.

Historical Background – Parents’Associations

For the formation of the first few parents’associations in India in the sixties and seventies,the initiative was taken by a few dedicated parentsin Bombay, Ahmedabad and Bangalore. During theseventies and early eighties, there was a steadygrowth in the number of parents’ associations allover the country, all functioning independently ofeach other even though they were working for thesame objective, viz., for the welfare of persons withmental retardation and providing them with manyfacilities for their education, training them to be asindependent as possible and including them in themainstream society.

The Role of the National Institute for theMentally Handicapped (NIMH)

Development of parents’ associations got afurther boost because parent empowerment wasone of the objectives of the NIMH established bythe Government of India in the early eighties.

In the nineties, the NIMH promoted theparents’ movement by organizing two National

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Parents’ Meet in 1993 and 1994 at its campus inSecunderabad, subsequently playing a crucial rolein the formation of Parivaar to consolidate theparents’ movement in India.

Formation of Self-help Groups andParents’ Associations

Consequently, during the late eighties andnineties, parents of persons with mental retardationand of persons with other developmentaldisabilities came together to form self-help parentgroups and parents’ associations, an importantdevelopment in the rehabilitation process of thesepersons.

Another milestone reached in November,1994, was the initiation of the National Parent Bodywith the technical support from the NIMH. Anad-hoc working committee was formed and the“National Federation of Parents Associations” wasestablished.

The first one formed in 1968 in Ahmedabad,was followed by 15 States and Union Territoriesin India. Presently 43 registered parentorganizations are working for the welfare of thepersons with mental handicap in the country.

Till 1980, there were only two registeredparent organizations in the country. Later, inAndhra Pradesh alone 13 parent organizations wereestablished and in Maharashtra, there were 6(Peshawaria, et al., 1994).

Parivaar – Its Genesis

In 1995, a few parents’ groups came togetherto form the National Federation for ParentsAssociation for Persons with Mental Handicap,now known as Parivaar. There were only 22parents’ associations in its Parivaar. Today thereare 170.

Parivaar amended its constitution to includeservices to persons with Autism, Cerebral Palsy andMultiple Disabilities, in its sphere of activities inconcurrence with the objectives of the NationalTrust Act, 1999.

Recognition of Parivaar - At Nationaland International Levels

Over the past decade, Parivaar, has beenrecognized at the national level, as an apex body ofparents’ associations. Some of its significantachievements are:

• Playing a significant role in theenactment of the National Trust Act forthe welfare of persons with autism,cerebral palsy, mental retardation andmultiple disabilities, in December, 1999.Gaining a consultative status with theMinistry of Social Justice andEmpowerment, Government of India,with the inclusion of the Parivaarrepresentatives in the various coregroups, the Central CoordinationCommittee and Central ExecutiveCommittee at the Central and the Statelevels.

• Conducting workshops and NationalParents’ Meets to bring awarenessamong the parents about the currentissues pertaining to the problems ofmental retardation and its associatedconditions.

• Organizing continuing educationprogram on ‘Capacity Building’ and‘Leadership Development’.

• Organizing Round Table Conferences atNew Delhi, Kolkata, Chennai, etc.during the last six years to bring parents,professionals, Government and business

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representatives to accelerate theimplementation of various legislationspertaining to disability.

• Initiating pilot projects as follow-upaction, in inclusive education, ruralhealth, employment generation andindependent living in West Bengal andTamilnadu.

• Forming state-level coordinationcommittees to follow-up the decisionsof the Round Table Conference.

• Having a joint venture with InclusionInternational, the international apexbody of parents associations, to promote,support and strengthen the vitalprograms of Parivaar.

• Execution jointly with InclusionInternational, of a research project, a firstin India, a study on the Methods andProcedures Used to Improve the Qualityof Life of Persons with Intellectual andDevelopmental Disabilities.

• The Parivaar members, in the know ofthe provisions in the epoch-making UNConvention on the Rights of Personswith Disabilities and demanded theratification of the Convention by India.

Parents’ Movement – Its Support SystemsThe UN Convention helpng in a big way,

the parents’ associations have been addressingadvocacy issues, such as public perception ofmental retardation, protection of their legal, civiland human rights.

The Parents’ Associations have taken up thetask of bringing the families of persons with mentalretardation and associated conditions to speakabout their needs— in taking care of their academic

and vocational training, their independent livingneeds, in helping them find/keep a job and toparticipate in leisure time, social and creativeactivities in the community. Bringing aboutchanges through the existing social institutions andlegislative channels is also being pursued.

Formation of Other Associated Groups

Sibling Groups

Involvement of sibling groups, sponsored byparents’ associations, helps in promoting a healthyintegration and interaction of the persons withmental retardation in mainstream community. Thesiblings are encouraged to participate in thetraining, habilitation and awareness buildingprograms and in conducting various leisure-timeactivities.

Family Cottages

Children with mental retardation, theirparents and family members, can utilize the FamilyCottage Services on the NIMH campus for 1-3weeks depending on their needs, to promote thedual needs of the child’s training and to meet theindividual needs of parents and other familymembers to promote healthy functioning.

Such residential programs of short durationare also being provided at Vellore (1986) andBangalore (1993).

Other Service Models – With ParentalInvolvement

Home Based Models

Itinerant workers making periodical homevisits to guide the parents have not been feasible,on account of the heavy finances involved.

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Centre Based ModelsThe Centre Based models provided the base

for the formation of parents’ associations.

Models which can be handled by groups ofparents as carryover agents at home are becomingmore feasible in the Indian context.

One such model, the Madhuram NarayanCentre for Exceptional Children, Chennaiprovides for the total involvement of parent groupsat the Centre in the initial period between birthand two years, after which the parents are weanedaway when their children become more and moreself-sufficient. The parents continue as carry overagents at home. The Center provides services fromfive different centres in Chennai.

Empowered by the compounded strength ofthe many parents involved at the Center, themothers in particular felt the time was appropriatefor them to take up “serious issues jointly with theirspouses”. Thus Maithree Parents’ Association wasformed.

NIMH–Centre Based ModelCentre Based Individual Model is used in

the Child Guidance Clinics and in institutionsproviding individual-based interventions by amulti-disciplinary team of experts.

At NIMH, Secunderabad, a managementprogram is designed by various professionals forparents as per the needs of the child to carry outthe program at home. Each family along with theaffected child has the opportunity to work out theirindividual concerns on a one-to-one basis.

Centre Based Group ActivitiesDue to paucity of facilities in the twin cities

of Hyderabad and Secunderabad, the model wasadopted at NIMH to reach out to large number of

children with mental retardation.The focus is moreon the child’s learning.

Parents are encouraged to attend groupactivities along with their children and serve asmediators in training their children.

Early Intervention Programs Initiated byParents’ Groups

After the research study in Chennai, in 1968,early intervention programs were initiated by

• The Andhra Pradesh Association (GoolPlumber, 1980).

• The Karnataka Parents Association(Mathias, 1981).

Other early intervention programs were in

• Chandigarh (Tehal Kohli , 1986).

• Karnataka (Indumathi Rao, 1980).

• Tamil Nadu a research study taken upin 1986 (Jeya Chandran, JayaKrishnaswamy), to develop trainingmodules in early intervention.

The workability and suitability of theprogram was established and the modules werepublished. A Research-cum-DemonstrationCentre was also established at Chennai–MadhuramNarayan Centre for Exceptional Children.

Research with Families

Epidemiological studies in the understandingof families as support groups is still in a nascentstage in India.

The major focus has been on studying thefeasibility of training mothers (Boaz, Jeychandran,1968) and on the positive attitudinal change in theparents towards their children with mentalretardation.

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Studies on the needs of parents in terms ofreasons for institutional placement were conducted(Rastogi, 1981; Bhatti, et al., 1985;Channabasavanna, et al., 1985; Devi, 1976;Hariassara, 1981; Srivastava, 1978; Mazumdar &Prabhu, 1972; Chaturvedi, S.K. & Malhotra, S.,1983; Chaturvedi, S.K., & Malhotra, S., 1984;Prabhu, 1970).

Impact on the parents was studied bySeshadri, et al., 1983; Sequiera, et al., 1990; Sethi& Sitholey 1986, Tangri & Verma, 1992; Wig, etal., 1985.

Investigations into social-emotional supportfor parents was presented by Moudgil, et al., 1985;and the treatment seeking behaviour of parents wastaken up by Chaturvedi and Malhotra, 1982.

Consumer deemed services by parents(Peshawaria, Venkatesan and Menon, 1988); andparent needs was presented from a conceptualframework (Peshawaria and Menon, 1991).

Family Intervention Services Program Planis developed, implemented and evaluated toencourage and initiate such systematic services inthe country and to promote scientific research inthe area of understanding and working with Indianfamilies.

The NIMH-Family Needs Schedule(NIMH-FAMNS) has been developed to assess theindividual needs of the family including needs ofeach of the family members, i.e., parents, siblingsand grandparents.

A study on Need-based Family Interventionmodel is presented to make family intervention areality in the field of rehabilitation of persons withmental retardation in India.

ChallengesParents’ movement in India has faced

challenges. They are:

• The services still continue to be basicallychild oriented; the emphasis is stilllargely on child skill training rather thanon helping build strengths in the parents.

• Facilities for counseling parents andfamily members to cope with theemotional needs and responsibilities ofhandling a child with mental retardationis still not within the reach of all.

• The focus currently is on extendingparents’ services, and on encouragingparents’ involvement in programs fortraining and habilitation and trainingdifferent levels of workers, parents havethe strongest voice. Being a constantfactor in a child’s life, the family teachesthe child ethical values and behavior.Since they sacrifice the most, parents’self-support groups need to bestrengthened.

On the positive side:

• Sarva Siksha Abhiyan, thecomprehensive action plan for inclusiveeducation for persons with disabilities,will immensely help the parents’movement.

• The National Policy for Persons withDisabilities will determine the course ofaction the parents’ associations will haveto take in the coming years.

• Parivaar and its various affiliates havegiven the required inputs on theinadequacies in the policy document andhave urged upon the Government torevise it in the light of the U.N.Convention.

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ConclusionThe parents’ associations have the

ombudsman’s role to oversee that the systemfulfills the needs of the persons with mentalretardation. The last few decades have been a timeof rapid change, in ideologies, legal systems,technological advancements and in the provisionof services, which has been beneficial to personswith mental retardation.

As a consequence, complex ethical and legalissues have been raised and many remainunresolved. There are also adjustment problemsamong the various professional bodies. Evenadvocates dedicated to improving the lives ofpersons with mental retardation are often dividedon some of the most critical issues. These arenecessary corollaries of progress of the persons withmental retardation in making the transition frombeing the discarded, deviants to fully participatingmembers of society.

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Introduction

A disability is due to the inter play of several genetic and ecological factors. No single

method or technique can deal effectively with thevarious aspects of a disability such as mentalretardation and its associated conditions.

Important and Innovative Programs“Innovation” refers to something new or

different in approaches – techniques, methodswhich are introduced to deal with the situation orcondition which is to be managed so as to bringabout required changes.

Some of the important innovative programsin the field of mental retardation are:

• Yoga and its effects on the child withmental retardation.

• Community Based Rehabilitation in thecommunity.

• Augmentative Intervention, the catalysts.

Yoga–The TraditionYoga is known for its time tested legacy in

health care which includes prevention andtreatment of ailments.

DefinitionsYoga is bringing two things together to unite

(V. S. Apte, 1979). It causes the movements in themind to come together and helps one achieve thefullest of his capabilities (Desikachar, 1982).

Chapter 10

Innovative Practices in theField of Mental Retardation

Yoga, practised regularly and systematically,helps in focusing attention on the activity that isbeing performed, in achieving higher levels ofperformance by exploiting one’s potential fully andin relying on one’s abilities, making one healthy,and having better relationship with others.

The Yoga Mandiram (1977) has introducedyoga in a joint research project with Vijay HumanServices, Chennai, a service organization, forpersons with mental retardation.

Yoga for Persons with Mental Retardation• The person should maintain a certain

amount of steadiness in the posturewithout much effort or tension, “sthira”(Desikachar, 1982).

• Comfort and steadiness in a posture isattained through undistractedconcentration of the mind on posture.

• The practice of asana is coordinatedthrough regulated breathing, that is,through pranayama.

Yogasanas–Selection and Introduction in theCurriculum for Training Persons with MentalRetardation

Fifteen asanas suitable and not contra-indicative of its effects at any stage during trainingwere introduced into the curriculum for theirtraining. They were: Adhomukha, Savasana,Apanasana, Bhujangasana, Cakravakasana,Dvipadapitham, Tadasana, Janusirsasana,

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Paschimataasana, Parsava Uttanasana,Salabhasana, Trikonasana, Utkatasana,Uttanasana, and Vajrasna.

Since 1977, four workshops at the nationallevel, have been conducted for special educatorswho have had at least three years experience ofpracticing yoga with persons with mentalretardation.

Aim of the Study

The study explored the feasibility andsuitability of practicing yogasana as a therapeuticco-curricular activity by the special educators, forthe total development of persons with mentalretardation.

• Yoga, as therapy, has the followingadvantages: A time-evaluated systemthat brings about the body-mindcoordination in a natural way permittingappropriate choice of asanas; it iseconomical, simple, easy to understand,practice and adapt through eitherindividual or group instruction.

Results of the controlled study:

• Those with mental retardation trainedin yogasanas reported significant gainscompared to a group without such input.

• The trained special educators realize arebest suited to teach yoga in a systematicway for the development of persons withmental retardation.

Overall BenefitsYoga helped improve the general functioning

level of persons, maintained in some andpreventing deterioration in others.

It helped them in correcting postures,reducing obesity, controlling dribbling, bringing

down hyperactivity, improving appetite, sleep andgeneral health. It also alleviated some of theconditions associated with mental retardation.

Breathing exercises and chanting haveaugmented the effectiveness of speech therapy.Improving bilateral activities, relaxation exercises,bending exercises, promoting attention, andconcentration span could also be facilitated withthe support of yoga.

Absenteeism had come down, thereby timeavailable for learning has increased and theimproved general health facilitated the persons tolearn more effectively without disruption anddisturbance in their training schedule.

Rehabilitation Council of India (1986) hasintroduced yoga as part of the curriculum of thespecial educators’ training program. All theservice-providing organizations have included itin their daily schedule of Individualized TrainingPrograms.

Reports on Studies“Teaching Yogasanas to the Mentally

Retarded” first published in 1980 was revised in1983 and 1988 (Vijay Human Services andKrishnamacharya Yoga Mandiram).

In 1985, results of the study was presentedat the 7th World Congress of the InternationalAssociation for the Scientific Study of MentalDeficiency and at the American PsychologyConvention.

Simplified “Teaching of Yogasanas to theMentally Retarded” is accessible, free of cost, to alarger population in India and abroad, withtranslations available in Japanese, Korean, German,French and Belgian.

Yogasanas have been incorporated inmanpower development and training curriculum

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dealing with mental retardation and including itin the school curriculum is on its way.

Community Based RehabilitationProgram (CBR)

CBR is a solution to the available inadequateservices to fulfill the needs of persons with mentalretardation, especially in the rural areas.

Definition–CBR (World Health Organisation)As defined by the WHO, CBR involves

measures taken at the community level to use andbuild on the resources of the community, includingthe impaired, disabled and handicapped personsthemselves, their families and their community asa whole.

Facilitating Community ParticipationCommunity may participate (through

providing manpower, facilities, logistics supportand funds) and may involve itself actively inunderstanding the problems, feasibility of theproposal for implementation and using primarycare services for prevention and protection.

Community Based Rehabilitation (CBR)Program for Young Adults with Moderateand Severe Mental Retardation

Pilot Study–AlwayeThe first systematic CBR Project in India was

conceived and initiated at CSI Karunalayam,Alwaye, Kerala, in 1983. The same wasimplemented in Chennai by Michael Gnana Duraiof the Christophel Blinden Mission andProf. P. Jeyachandran, Vijay Human Services.

Material and Manpower Resources from theCommunity

At Alwaye, where the residential CBR

program was planned to be set up, 6 girls, aged 18to 20 years with hands-on experience in trainingchildren with mental retardation, volunteered tohelp the professionals in training the wards in self-help skills, cooking meals for them, taking themout on field trips and in other tasks. With theirexperience, they were able to identify persons withmental retardation in their own villages, all locatedwithin a radius of 15 km.

Implementation of the ProjectThe volunteers attended a crash course on

the basics, such as assessment, setting goals andobjectives for each individual and on theimplementation of the individualized program planfor those identified.

The Centre was located at a cost-free,residential facility in the village.

The helper resided in the premises. Tenchildren from in and around the area were broughtdaily by the parents for training. Initialprogramming was done by the special educatorfrom Alwaye.

Visiting staff from Alwaye initially gaveassistance daily tapering off to twice or thrice a weekand later, once a month.

The Arivalayam CommunityRehabilitation Program

A CBR program was initiated at Arivalayam,Tiruchirapalli, Tamil Nadu, in 1985.

The resource centre (instituted as a socialresponsibility measure by the Officers’ WivesAssociation of the Bharat Heavy Electricals Ltd., apublic sector undertaking) was a school serving 220persons with mental retardation, where 20 trainedspecial educators were assisted by aninterdisciplinary team of experts.

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Arivalayam, and three other centres whichcame up later, jointly serve about 300 persons inall, in Tiruchirapalli district.

Rationale for Selecting Arivalayam

Factors favoring Arivalayam were, adequateinfrastructure, technical know-how, willingadministration and teaching staff, which werereadily available for CBR manpower development,and financial support from the ChristophelBlinden Mission, India

Survey Techniques

Identification of persons with mental retardation tobe served: Two blocks, with the combinedpopulation of around 50,000 people in theproximity of Arivalayam, were selected. About 12hours, the time allotted in the school curriculumfor community service, was utilized to give theorientation lecture-demonstrations to the girls-volunteers at the end of which they were evaluatedon their skill in identifying at least one person withmental retardation from their respective villages.Post-training, accompanied by a special educatorfrom Arivalayam, the girls, in groups of 10,screened persons with mental retardation, in door-to-door visits. The successful survey was due in alarge measure to the sensitization received by thevillage health workers, panchayat officers, schoolteachers, political party representatives and villageelders, who extended maximum cooperation. Aninterdisciplinary team of experts confirmed mentalretardation in the 50 children thus identified,except for 3, the slow learners, who were advisedto attend regular schools.

Awareness Generated by the Survey

The awareness generated in the villagesthrough the survey was a great achievement

because these future mothers would be wellqualified to take care not only of themselves butalso be vigilant to help other mothers in theneighborhood.

Selection of Personnel

Public notification and individual lettersaddressed to those involved in carrying out thesurvey were the means used for selecting 20candidates, 6 for the Arivalayam sponsored CBRproject, the rest to be allocated to the collaboratorswho were willing to run CBR programs.

For 45 days’ intensive training, 80%earmarked for practical training and the rest foracademics, the expert committee at Arivalayamdrew up a curriculum based on the experience ofthe pilot project and the community needs. Thetrainees lived in Arivalayam along with theresidents, the persons with mental retardation. Aspecial educator with over 10 years’ experience,evaluated them periodically.

The base centre from where the majority ofthe children were identified was selected in whichchildren living within a radius of 2 km. werebrought using local transport. The special educatorsfrom Arivalayam served as resource persons whowere available full time for a week only andwithdrawn when self sufficiency was achieved.

Infrastructure

Infrastructure from the noon meal centres,public health and community recreation centreswas made use of. One shed was rented. Periodicevaluation was done by the interdisciplinary teamof experts.

At each centre, one trained CBR worker andone untrained aid or helper were paid monthly atthe prevalent rates.

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Parental InvolvementParents were trained in a trade or a craft

specific to the village to generate income. Anotherstrategy was to have them interact with similarparents from Arivalayam in one-to-one dialoguesand later in group discussions.

Involving the Panchayati Raj System–For EffectiveImplementation and Sustenance of Community BasedRehabilitation Programmes

Though the entire project has been fundedby the CBM, still talks were in progress to involvethe Panchayat in each village to assist the CBRprograms and to share in generation of funds tomake them self-sustaining. A nominal, monthlycontribution from each household could pay forthe services of CBR workers/special teachers andassistants.

Arivalayam Community RehabilitationProject

It presently creates awareness with thecooperation of the members of the community,conducts follow up programs on high risk parentsfor prevention of disabilities, implements centreand home-based early intervention programs,teaches functional skills required at the communitylevel, gives vocational training (in the locallyavailable trades either in the family or in thecommunity) to help augment family income andarranges referrals.

Arivalayam – A Parent BodyArivalayam – A Parent Body is a resource

centre for manpower and material development,which initiates, coordinates and monitors CBRprograms, interfacing with two other collaborators.

Supported by various international agenciesand government organizations, several CBRPrograms were initiated by organizations such as

• Action Aid, Bangalore.

• Anand Niketan, Dist Burdwan,W. Bengal

• Arivalayam, BHEL, Tiruchirapalli, TamilNadu

• Blind Men’s Association, Ahmedabad,Gujarat

• CBR Forum India, Bangalore, Karnataka

• Central Institute on Mental Retardation,Thiruvanthapuram, Kerala.

• Chetana, Bhubaneshwar, Orissa.

• Mano Vikas Kendra, Kolkata

• National Programme for theRehabilitation of Persons withDisabilities (NPRPD), Govt. of India

• National Institute for the MentallyHandicapped (NIMH), Secunderabad,Andhra Pradesh

• National Institute for Mental Health andNeuro Sciences (NIMHANS),Bangalore, Karnataka

• Samadhan, New Delhi

• Sewa in Action, Bangalore, Karnataka

• Thakur Hariprasad Institute,Rajahmundry, Andhra Pradesh

• Verar Program, Mumbai

There are about 100 voluntary organizations,which provide the CBR services with governmentsupport up to 95% of the expenditure.

National Open School (NOS)Many service organizations and some

mainstream schools have affiliated themselves withthe NOS system of education up to the secondarylevel and technical instruction level, mainly to thehearing impaired, slow learners, learning disabled,those with autism, and cerebral palsy.

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They appear for examinations at their ownpace and the certificates received enable them forhigher levels of education and placements.

Integrated Child Development Scheme(ICDS)

Health workers, urban and rural, who aregiven periodical inputs in health care, in earlydetection and identification and referrals to thehealth workers, nutrition, growth monitoring, andchild guidance, visit the ICDS Centres regularlyto implement the scheme developed by theGovernment of India with funding frominternational organizations.

Adult Leisure and Learning Program(ALLP)

An earlier survey conducted in Delhi in 1980by the Federation for the Welfare of the MentallyRetarded, observed that persons who had receivedsystematic schooling up to adult years were notdirected to engage themselves in any productiveor meaningful occupations.

With their active participation, animprovement in the quality of life, particularly inthe years after completion of school life wasnoticed. The young adults participate in verystructured and activity-oriented recreational andlearning activities, such as, story telling, playinggames, learning simple cooking, visiting postoffices, banks, etc., which leads to greaterparticipation in community and family life.

Foster Care HomeFoster Care Home is a special home for

children with mental retardation who requireaccommodation and special care. Almost all theStates have initiated establishment of foster homesfor their practicality and traditional approach.

Augmentative InterventionsApart from special education, other

augmentative interventions, given to personswith mental retardation, are mentioned below.

ChantingVedic chanting practiced by persons with

mental retardation has shown positive effects inarticulatory movements of the lips, the tongue, andin matching the pitch in sound production (Sriram,Germany).

Dance TherapyRhythm, facial expressions, body language,

are the different facets of dance in which trainingcan be given. Music as an accompaniment adds tothe therapeutic effects.

Dance promotes the spacio-motorperception and bilateral movements; it providesfollow up to balancing skills, posture correctionsand other fine and gross motor skills required inperforming daily living activities. As a medium ofexpression through facial expressions, symbols(mudras) and body language, dance has facilitatedacquisition of effective communication skills andsocial interaction (Jyotsna Buch, Chennai andTripura Kashyap, Bangalore).

Percussion

Percussion facilitates in the areas of numberlearning, promotion of bilateral activities, sensory-motor coordination, posture, finger dexterity, finemotor skills, and multi sensory stimulation.

The Central Institute, Tiruvananthapuram,Kerala; Thakur Hariprasad Institute, Hyderabad,Andhra Pradesh; Mano Vikas Kendra, Kolkata,West Bengal; Sashi Mangalyam and Mrs. Vakil’sSchool, Mumbai, Maharashtra have introducedthis in their curricular training.

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Instrumental MusicMany music band teams have been formed

by children with mental retardation all over thecountry.

Instruments, both string and wind, and themodern day keyboard have also been introducedin special schools. Training to play on theseinstruments facilitates sensory motor stimulation,finger dexterity, fine motor skills, and breathing.

HydrotherapyHydrotherapy facilitates observable increase

in mobility, and improved balance and postures,gait improvement, treatment of hyperactivity inthose with associated motor problems. Cost factorhas restricted its introduction in more centers.

Other Therapies in Practice, yet to be empiricallydocumented

Acupressure, acupuncture, ayurvedicmassage, aroma therapy, brain gym, flowerremedies, horse therapy, pranic healing, reikhi, taichi, varma kalai.

ConclusionYoga for persons with mental retardation is

now an integral part of any training program forpersons with mental retardation.

Community Based Program, a traditionalpractice in India is now an accepted practice in itsnew form, to reach the services at the communitylevel and serve the large population in need. Theefficacy of the various other systems need to be yetstudied.

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Chapter 11

Policies and Programmes

Introduction

The Constitution of India (1950), Article 41,states the ‘Right to Education and Work’ and

Article 45 on ‘Free Compulsory Education for AllChildren up to the Age of 14 Years’, both Articlesare inclusive of children with mental retardation.

The Education Commission, 1964-66directed to move education for persons withdisabilities from that of the charity mode to one ofthe rights mode, hoping that at least 5 per cent ofthe persons with mental retardation should havereceived education by 1986. It lay emphasis onmaking persons with disabilities as useful citizensin their adult lives.

The Commission further recommended thatboth special schools and schools in the integratedschool system should include persons withdisabilities.

The National Policy for Children, 1974The National Policy for Children, 1974

included children from the weaker sections ofsociety and disabled.

Integrated Education of DisabledChildren (IEDC), 1974

Supported through research conducted bythe UNESCO, the program for IntegratedEducation of Disabled Children (IEDC)implemented by the Ministry of Human ResourceDevelopment in 1974, aimed at promoting accessto education for all children with disabilities. The

trained resource teachers support the mainstreamschool teachers in providing appropriate educationto children with disabilities.

The move for education of persons withdisabilities is its inclusion in the National Policyon Education, 1986. Project Integrated Educationof the Disabled Persons (PIED) is an outcome ofthis policy.

The National Policy on Education (NPE)

The National Policy on Education (NPE)formulated earlier was acted upon in May 1986.

• Specific recommendations made in thepolicy document (NPE, 1986, 1992)were in the areas of integrated educationfor persons with mild disability in themainstream schools, special schools forpersons with severe disabilities withhostel facilities at district headquarters,vocational training, reorientation ofteacher training program to includepersons with disabilities and servicesprovided by voluntary organizations.

The State governments are now openingfacilities for at least one school in each district,either day care or residential to provide educationalfacilities to children of that particular district. Atthe district headquarters, service centres alsoprovide for diagnosis, referrals, and interventions.Parents work as carry over agents at home for theirchildren.

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The International Year for the DisabledPersons (IYDP), 1981

India was one of the signatories to theresolution IYDP, 1981 endorsing the objectives setforth in the resolution of the General Assembly.

It was visualized to:

• form a National Policy for the disabled.

• to provide a network of services withfocus on the rural handicapped,

• to set up National Institutes, and

• to establish special education cells in theState Councils of Educational Researchand Training (SCERTs), State Institutesof Education (SIEs), etc.

The then Ministry of Welfare and theMinistry of Education and Culture appointed anAdvisory Committee to make salientrecommendations to the Government to initiateaction regarding early detection, prevention,medical and physical rehabilitation, educationand training of handicapped including teacherstraining, employment and the role of NGOs andcreation of public awareness.

Project Integrated Education for Disabled(PIED), 1987

In support of the IEDC program and toprovide further impetus, the Project IntegratedEducation for the Disabled (PIED) in 1987 waspiloted by the NCERT and supported by theUnited Nations Children’s Education Fund(UNICEF) in remote villages which were dividedinto blocks of 80-100 schools for programimplementation. Through the project, cooperationof local officials, NGOs, community members,and parents was solicited. A three-phase trainingprogram targeted all teachers initially andculminated with introducing Teacher Educationprogram at the community level.

Integrated EducationThe term “integration” is based on the

“principle of normalisation” that “you act rightwhen making available to all persons withintellectual or other impairments of disabilities,patterns of life and conditions of every day livingwhich are as close as possible to or indeed the sameas the regular circumstances and ways of life in theircommunities”.

The ideology on which integrated educationis based is reflected in a unitary system of educationand the approach rests on the fundamentalprinciple of education, “all children are special”(Billimoria, 1999, p. 2.).

The Kothari Commisision, 1964-66 andUNESCO in the 1970s recommended that thosechildren who are capable of being educated in themainstream schools should be given equalopportunity through integrated education.

UNESCO advised the developing nations todirect their national policies towards equal accessto education (1973, 1977).

Many voluntary agencies and private schoolshave also implemented different models ofintegration with special educational support inurban settings.

The major functional approaches ofIntegrated Education are:

• Assimilation of children with mentalretardation.

• Removing the feeling of inadequacyand insecurity among the children withmental retardation.

• Promoting professionalism amongteachers.

• Creating new skills and attitudes amongthe teachers.

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The most effective means of combatingdiscriminatory attitudes is by creating supportivecommunities, building an inclusive society andachieving education for all.

In India, the National Policy on Education(NPE) in 1986 stated, “the objective should be tointegrate the physically and mentally challengedwith the general community as equal partners, toprepare them for normal growth and to enablethem to face life with courage and confidence”.

The Government has established severalinstitutions across the country for improving theeducation processes. They are:

• The State Council of EducationalResearch & Training (SCERT).

• Institutions for Developing Activities inPlanning and Management.

• The National University of EducationalPlanning & Administration (NUEPA).

• District Institution of Education andTraining (DIET).

• The State Institute of EducationManagement and Training.

The National Policy on Education, 1986, thePersons with Disabilities (Equal Opportunities,Protection of Rights and Full Participation) 1995,The Rehabilitation Council of India (RCI) Act,1992, have given the needed impetus to theestablishment of

• an International Centre for SpecialNeeds Education, by the NationalCouncil of Educational Research &Training (NCERT) in collaboration withUNESCO,

• the District Primary Education Program(DPEP).

Although the DPEP was initiated in 1994 asa Government program, Integrated Education forthe Disabled was added as a program componentin 1997.

To begin with, states were provided withassistance to prepare action plans. By 1998, manystates had initiated surveys and formal assessmentcamps and evolved strategies to provide resourcesupport to children with special needs.

Residential ProgramResidential centres have been established for

the persons who have transport difficulties to reachspecial schools, those who require constant medicaland custodial care, which parents and care giversare not in a position to give.

Special SchoolsSpecial schools, the largest in number for

persons with mental retardation in the country,provide for individualized attention not availablein mainstream schools, though they have led totheir social segregation with non-retarded peers.

One way of introducing integration in specialschools is by encouraging non-disabled childrento come into special schools under the NationalSocial Service Corps (NSSC) or Socially Usefuland Productive Work (SUPW) schemes. Asinnovative teachers build in to their curriculum,activities that take the children out into thecommunity, shops, post offices, restaurants,involving bus travel and so on, they createopportunities for integrated septum.

Special Class

Special Class in a regular school is mainlyfor children with moderate and severe mentalretardation, whose educational needs are morespecific in nature, who can be integrated for non-

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academic activities such as games, physicaleducation, music, art and crafts.

The Community Based Rehabilitation(CBR)

The Community Based Rehabilitation(CBR) programs, yet another governmentalinitiative to promote integration was launched in1985.

Though not a new concept in India, the CBRprogram is made more structured with fundsallocated and local village leaders empowered.

The CBR was not very beneficial for thosewith mental retardation. However, they gainedsome amount of skills needed for social acceptance.

Ministry of Social Justice andEmpowerment

The Ministry of Social Justice andEmpowerment is responsible for the rehabilitationefforts, including administration of special schools,with supporting assistance from the Departmentsof Health, Labor, and Employment. Existingschools serve about 2 to 4 percent of all individualswith disabilities.

The vast majority of schools located in urbanareas and the others unevenly distributed acrossthe country, approximately one-fifth of theseschools offer secondary level education.

Even though non-governmentalorganizations surpass government run specialschools, in both quantity and quality of services,not all of them have ‘inclusive’ settings, some notadmitting non-ambulatory students.

Non-Governmental Organizations(NGOs)

The NGOs receive 85 percent of allgovernment sanctioned funds for persons with

disabilities. Most special schools are residential sothey may serve populations from remote rural areasand from States which have limited services.

Mental Health Act, 1987As the Mental Health Act was not applicable

for persons with mental retardation, a legal vacuumprevailed in the areas of protection of the personswith mental retardation, till the Persons withDisabilities Act, 1995 came into being.

The THPI, Hyderabad organized an AllIndia Seminar to frame a National Policy for theMentally Handicapped in February, 1987. A majoroutcome of the event was the appointment of theBehrul Islam Committee, which was a prelude tothe subsequent Acts of Parliament in the area.

The Program of Action, 1992

This was formulated after a debate on theNPE (1986, 1992) by the Ministry of HumanResource Development (MHRD), Government ofIndia, for implementation of the plan for thepersons with mental retardation.

By the end of 1991-92, Integrated Educationfor the Disabled (IED) plan had been implementedand the Project for the Integrated Education of theDisabled (PIED) in 1992 included mentalretardation within its Plan of Action for educationin integrated settings, a status denied till then.

The faculty of 102 District Institutes ofEducation and Training (DIETs) in the countryreceived training in special education program inthe NCERT.

Multi-category Teacher Training (MCT)courses (through NCERT, RCEs and withUNICEF collaboration) and the NationalInstitutes ensured availability of trained manpowerto the special schools.

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The programs are being monitored by theMinistry of Social Justice and Empowerment,Government of India.

At present, all SCERTs in the country havespecial education units and all the DIETs havetrained special educators, and the NGOs have beenassisted in meeting the challenges.

The Ministry of Labour is providing trainingthrough Craftsmen Training Scheme (CTS),Apprenticeship Training Scheme (ACT) andVocational Rehabilitation Centres (VRCs) on acontinued basis.

All in-service teachers, Heads of institutionsand administrators have been receiving inputs inthe education of the persons with disabilities,through the DIETs established during the EighthPlan.

The ECCE scheme through the ICDS, pre-school programs, and the DPEP have includeddisability education, inclusive of those with mentalretardation, since 1999.

The RCI, through its linkages with theNational Council of Teacher Education (NCTE),universities, international agencies, the NationalInstitutes and the NGOs have been responsiblefor:

• standardization of curriculum,

• monitoring and evaluation,

• assessment of teacher training,

• research and development in the fieldof disability including that of mentalretardation and its associated conditions.

Since 1993, massive in-service programs andpreparation of different categories of manpowerdevelopment, nation-wide have augmented theservices and the rehabilitation programs.

The Persons with Disabilities (EqualOpportunities, Full Participation andProtection of Rights) Act, 1995

The Persons with Disabilities Act, 1995 hascome into enforcement on February 7, 1996 toensure the full participation of persons withdisabilities in nation building activities.

The Act provides preventive andpromotional aspects of rehabilitation. This includeseducation, employment, vocational training,reservation, research and manpower development,creation of barrier-free environment,unemployment allowance, special insurancescheme for the disabled employees andestablishment of homes for persons with severedisabilities.

The Economic and Social Commission forAsia and Pacific (ESCAP)

The Economic and Social Commission forAsia and Pacific (ESCAP) at its forty-eighth sessionheld at Beijing adopted a resolution 48/3proclaiming the period 1993-2002 as the Asian andPacific Decade of Disabled Persons.

The agenda for Action for Asia and PacificDecade of the Disabled Persons laid emphasis onenactment of legislation aimed at equalopportunities for people with disabilities,protection of their rights and prohibition of theirabuse, neglect and discrimination.

The National Trust for Welfare forPersons with Autism, Cerebral Palsy,Mental Retardation and MultipleDisabilities Act, 1999

With the current trend towards a shift fromjoint family to nuclear families, the care andmanagement of the dependent children withdisabilities, after the life time of their parents hasbecome a great challenge.

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The National Trust Act has made provisionsfor the appointment of guardians for those whohave sought assistance and provided them withresidential facilities through organizations wherethe prescribed standards of space, staff, furniture,rehabilitation and medical facilities are maintained.

• This Act provides for the constitutionof a body at the National Level for theWelfare of Persons with Autism,Cerebral Palsy, Mental Retardation andMultiple Disabilities and for mattersconnected therewith or incidentalthereto. Autism, Cerebral Palsy andMultiple Disabilities had not beencovered under the Persons withDisabilities Act. Mental Retardation hasbeen included under this Act toemphasize the guardianshiprequirement for persons with mentalretardation. The Act also envisagesextending support to registeredorganizations to provide need basedservices during the period of crisis in thefamily of persons with disability.

National Handicapped Finance andDevelopment Corporation (NHFDC)

Any Indian with 40% or more disability, inthe age range of 18-55 years, is eligible for thescheme introduced by Government of India forenhancing employment of persons with disabilities.

Specific jobs have been identified for personswith intellectual impairment for availing the facilityof loan through the scheme.

Scheme of Assistance to Disabled Persons forPurchase/Fitting of Aids and Appliances(ADIP)

Persons with mental retardation may receivefree of cost, assistive devices (if there is an associated

locomotor disability), educational kits and suppliesfor daily living skills.

National Program for Rehabilitation ofPersons with Disabilities (NPRPD)

The NPRPD provides the requiredinfrastructure to provide rehabilitation facilities atstate, district, block and gram panchayat (village)level. Centre-based as well as community-basedprograms and schemes for implementation of theprograms at the state level, with financial assistancefrom the Centre.

It is envisaged that the unreached villagerswith disabilities will have services, and thecommunity will be empowered.

Science and Technology Project inMission Mode

The Science and Technology Mission Modeof Government of India supports projects inScience and Technology in providing equalopportunities and access to persons with disability.

The purpose was to reach out to persons withdisabilities in rural areas, with indigenous andeffective methods on the one hand and for keepingpace with the technological advances for ensuringaccess and quality in their life, on the other.

The NIMH undertook a project funded bythe S&T on computer assisted instruction forpersons with mental retardation.

A total of six software programs forfunctional academics and independent living incommunity is being used.

Children with mental retardation are alsotrained in using these programs which helps inraising their self-esteem. Universalisation ofEducation.

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Special Education for Children withMental Retardation

The UN Declaration, ‘Education For All’,particularly for children with mental retardation isa big challenge which is being met by theGovernment of India through various schemeshaving different dimensions.

• Children with mild mental retardationare educated in mainstream schools(with the required curriculummodifications) and in special schoolswith functional academics in thecurriculum if they cannot cope with theformer.

• Children with severe intellectualdisabilities or those who live in placeswhich have no access to school educationare on home bound programs.

• The scheme for Integrated Education forDisabled Children (IEDC) beingimplemented by the Ministry of HumanResource Development is implementedin the mainstream school, but as aseparate unit.

• The trained resource teachers supportthe mainstream school teachers so as toprovide appropriate education tochildren with disabilities in the SarvaShiksha Abhiyan inclusive programs ofeducation.

• The National Institute of OpenSchooling (NIOS) is a program of openeducation, which includes children withmental retardation also.

• Those with borderline intelligence studyat their own pace with a reducedcurriculum content.

• Vocation-oriented education.

Sarva Shiksha Abhiyan–Education for AllThe Ministry of Human Resource

Development, Government of India, implementedthe program in 2001 all over the country forchildren in the age group 6 to 14 years, followingthe policy of ‘Education for All’ in an inclusive setup.

Special educators are appointed as resourceteachers for the special children, but the ratio ofspecial educators to the number of children‘included’ is not uniform for every block or in everydistrict.

Prior to the introduction of the program,children with mild/moderate level of retardationhad already been included in the normal course inmainstream schools.

The program is run by the non-governmental organizations in Tamil Nadu andrun by the government in other States.

This program has served its purpose in thoseareas where special schools have not beenestablished at all.

The District Primary Education Program(DPEP)

The District Primary Education Program(DPEP) towards universalization of primaryeducation including children with special needs hasbeen implemented in a number of districts.

• The DPEP includes children at theprimary level (up to Class V) withsuitable teacher preparation,infrastructural facilities and aids andappliances.

• Children who cannot cope with theregular curriculum, attend specialschools. There are over 2,100 specialschools run by NGOs with and withoutgovernment support.

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• Empowering parents by training themto teach their children in earlyintervention programs, serving as thecarry over agents in training at home is amajor mode of reaching out to childrenwhere there is no access to school.

• The Tamil Nadu Government has setup, through the non-governmentalorganizations, 36 early interventioncentres, one for each of the districts.

• By training the caregiver or the parent,precious time in the child’sdevelopmental period when maximumlearning occurs, is not wasted.

• Parents also develop a positive attitudeand confidence in training their childrenwith mental retardation.

• Such training is also center-based whereparents accompany the child, learn theskills demonstrated, impart them to thechildren at the centre.

• Another method is to have itinerantteachers periodically to train the parentsat home using locally available material,which is viable and cost effective.

With the above program in place, no childwith special needs will remain unattended.

Vocational Training and Employment ofPersons with Mental Retardation

In the past, vocational training was anextension of the school program where traditionalroutine skills such as weaving and crafts weretaught. Today, with activity centres established,training involves matching the levels, ranging frommild to severe levels of retardation, with openemployment, sheltered employment, familysupported employment.

The Government has introduced 3% jobreservation in the government sector for personswith physical disabilities, but there is no quota yetfor persons with mental retardation. However,positive support is received through technicalassistance and finances from the NHFDC.

Schemes of the Ministry of Health& Family Welfare

Prevention, Early Detection and InterventionEfforts of the Ministry of Health and Family

Welfare, Government of India are directed atprevention of disabilities through increasing publicawareness, immunization, pulse polioimmunization and sensitization of grass root levelworkers and PHC doctors.

Appropriate treatment and management ofepilepsy and related medical problems in childrenwith intellectual impairment is taken up.

Training is imparted to professionals andparents on simple early intervention techniques toreduce and/or arrest the severity of the conditionin their wards.

ConclusionQuality of life of persons with mental

retardation has been significantly enhanced.

Families of the affected are beingempowered. Self-advocacy measures are beingtaken and independent living skills are impartedto the persons with mental retardation.

Reaching the persons in remote, rural, tribaland hilly areas is a priority for the Government ofIndia.

Educational and training programs suitableto the social cultural milieu of each region are beingdeveloped, so that persons with mental retardation

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develop competencies to live independently in theirown environments.

Translating the policies and training materialsin Indian languages in print and non-print mediato reach out to every person with disabilities in hiscommunity is of prime importance. This task hasbeen undertaken effectively.

Continuous research and development in alldimensions of mental retardation is of utmostimportance for future development.

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Introduction

Persons with mental retardation are employableboth in public and private sectors, in regular

competitive work settings as well as in ‘sheltered’ones. Attention to their vocational preparation hasgained importance since the enactment of thePersons with Disabilities Act, 1995.

OverviewTraining of persons with retardation and with

associated conditions to their optimum potentialhas been possible through technologicaladvancements. With greater attention being paidto school programs and very little on vocationaltraining, progress has been slow.

Special schools in India provide educationup to 18+ years, the curriculum including pre-vocational and vocational training. Yet, concern fortransition from school to vocational training centreshas not been serious.

There are over 60 sheltered workshops wheretraining is given on the traditional trades, such ascarpentry, candle making, caning chairs, tailoring.The Departments of Welfare in the states do notprovide sufficient grants to such shelteredworkshops as much as they do to the mainstreameducational institutions, though shelteredworkshops have to pay wages to the trainees anddo not charge fees (Divatia, 1979).

Though there are over 10 centres runningDiploma Course in Vocational Training, only a few

provide suitable vocational training due to shortageof trained manpower. Those available are also notgainfully employed.

Vocational training is related to the needs formarketable products identified through a survey.Market survey is an area which requires attention.

Vocational Training and RehabilitationVocational Training, pivotal to the

rehabilitation of persons with mental retardationcan be given to the person who is independent inpersonal, social, emotional, life, independent insurvival, safety as well as work related skills.

• About 400 institutions in this countryprovide vocational training. So do somespecial schools.

• Special vocational centers have also beenestablished.

• Still, many persons with retardation failto be employed due to lack of trainingin social and work adjustment skills.Some special schools help by providinginsitu training.

• Various stages followed in the area ofvocational rehabilitation are

• systematic school instruction,

• planning for transition,

• placement for meaningfulemployment, and

• follow-up services.

Chapter 12

Vocational Training and Employment

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Pre-reading, pre-writing, etc., the basicskills that permits an adequate development ofpsychomotor co-ordination constitute thesystematic school instruction at the pre-primaryeducation level. Socialization and living togetheralso begin at this stage.

During the secondary level, job orientedfunctional academics are reinforced and enlarged.Simple activities are initiated — a basis for the pre-vocational stage. More attention is given todeveloping general work habits, well groomedappearance, communication skills and appropriatesocial behavior.

At the pre-vocational period, development offunctional skills and appropriate social behaviorpreparatory for transition are attended to. They arenecessary qualifications for any vocation.

The objectives of pre-vocational training are:imparting training and creating opportunities fordevelopment of functional academics, personalsocial skills, survival and safety skills and workreadiness skills; developing adjustment skills byproviding experiences in various life situations; andnormalizing work related behavior.

The activities involved at pre-vocational stagefor transition are: survey of the employmentpotentials in the community and desired entry levelskills; the student’s interest and aptitudeassessment; individualized transition plan preparedin co-operation with parents and employeestowards the end of school years; prior training ofthe students for a short period in the simulated setup in the school.

Vocational Training is also meant for adults withmental retardation who complete their specialschooling with intermittent, limited, extensive and

pervasive support. This support continues intotheir vocational training, placement and thereafter.

In the developed countries, a minimum IQof 20 is a requirement for productive work. In Indiatraining is offered only for those with IQs of 40 orabove.

Vocational Rehabilitation

The first step, assessment has to be in twoareas: for the amount of support he/she may needand assessment of the job opportunities availablein the community.

The five areas of assessment are: medical (forfunctional/organic limitations), physical (forphysical performance—effort and workingcapacity), psychological (for intelligence,mechanical and constructional aptitudes, interest,etc.), educational (for personal, social, academicand safety skills), vocational (for skill level,aptitude and occupational abilities).

The purpose of community assessment is toidentify potential employment opportunities in thetrade in which training is given. Throughassessment, specific skills (which should be thesame skills on which the trainees are assessed)required for performance on a job on site isidentified.

Surveys conducted on available jobs,employer contacts and job analysis should providethe information which forms the basis for thevocational training programs.

Work skills include specific skills—job task /social, and related behavior that are necessary forperforming any given job.

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After the selection of job site, specific skillsare identified and targeted to provide systematicand appropriate training.

Placement AreaThe trained person moves towards one of

the three possible employments:

(i) Vocational Potential of Young Adults andAdults with Mild Mental Retardation

Persons with mild mental retardationfunction in regular (competitive) employment.Their performance depends on their training andthe support they receive from the agencies whichhave placed them. They may get placed in‘sheltered’ workshops where they may be under-employed or isolated from the mainstream.

Individuals with severe levels of retardation,usually work in sheltered workshops or in adultday-activity centers. The latter may not necessarilybe remunerative.

(ii) ‘Sheltered’ Employment

The term, sheltered workshop is popularlyunderstood in India to mean safety and protection.

A person with mental retardation may betrained in a sheltered workshop and employedthere itself. Since their training in specific tasksmatches their ability and working undersupervision, those with mild and moderateretardation also benefit from shelteredemployment where developing the required socialcompetence is found relatively easy. Examples are,assembling and packing units in workshops,carpentry units and in spray painting.

(iii) Open Employment

The routine, repetitive jobs in the market canbe successfully performed by the individuals withmental retardation with initial support from the

trainer and with the necessary social competence.Careful selection is required to avoid exploitation.

Open–Supported EmploymentThe proven efficacy of the program in the

USA, leads to a possibility of introducing the samein India, This by itself is ‘inclusion’ even at thevocational levels.

Individuals with mild retardation arerelatively more suitable for open employment.

The following posts are suitable for openemployment: office boys, helpers in canteens, inshops—stationery and grocery. Operators ofphotocopying, cyclostyling and washing machines.Vehicle workshops, printing press are other possiblevenues.

Self-employmentThose families with resources can ensure

self-employment. If the person with mentalretardation has been given appropriate training inthe particular job/task that the family has identifiedor has it in its own family trade, then they are readyto provide supervision and support.

Self-employment can be counted as a goodprospect for individuals with mental retardationin India. Dairy/poultry farms and agriculture aregood examples.

In urban areas, there is documentation ofsome families employing persons with retardationusing their own resources in enterprises such asenvelope making, agarbathi and candle making andrunning a small pan shop.

Self-employment can be very successful in asupportive environment.

Mobile Work CrewIn USA, a person with mental retardation

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functions as a member of a small group of workerswho perform custodial tasks guided by on-the jobsupervisor. The mobile crew moves from site tosite.

In India, building construction work,maintenance of gardens/public places/places ofworship/parks/hospitals and restaurants mayprovide opportunities for the mobile work crewwhich should be organized to include persons withmental retardation also.

EnclaveEnclave, also in practice in USA, is a group

oriented work setting, referring to a physical areawithin a business area, where a small group ofpersons with disability and a full time supervisorare employed.

In India, ‘enclaves’, exist conceptually, butpersons with mental retardation are not usuallyemployed.

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

Services (domestic) Industry (general)

Childcare Small parts assemblyCleaning and room preparation: Home SolderingTourists’ 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 machineHelper (in cafeteria, restaurant and hospital):cook, baker, general kitchen, service table.

Services (building) Public ServiceHelper: general maintenance, porter at airport, porter, Helper: road maintenance, garbage andonly at a barrier free railway station, watchman, trash collection, park and grounds maintenance, painting,lift operator. maintenance.

Services (personal) Trades and ServicesHospital, 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, steamWashroom 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

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Industry (paper and paper products)Helper: pulp mill, newsprint factory, stationerymanufacturing

Industry (printing) Office WorkHelper: newspaper, greeting card, printing, book binding Clerk: general, filing, mail handler, mail/messenger

Office machine operator: copier, mimeograph

Industry (leather and leather goods) FarmworkHelper: 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) FisheryHelper: glass production, brick yard, drain-tile-pile, Hand: fishing, hatchery Helper: fishing boatspottery, cement block, quarry

Industry (food products) MiscellaneousHelper: poultry, slaughter house, frozen foods, cannery, Delivery manbake 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 –JobTraining and Placements

The valuable experience gained byorganizations such as those mentioned below canbe of value for the new entrants:

Thakur Hari Prasad Institute ofRehabilitation & Research for the MentallyRetarded, Hyderabad; Sweekar RehabilitationInstitute for Handicapped, Secunderabad; SwyamKrushi, Hyderabad; Amar Jyothi Institute ofDelhi; Vivekananda Udyogalaya; Mrs. Vakil’s SewriSchool, Children’s Aid Society, Dilkhush Home,Malad Special School all in Mumbai; PrabhodiniTrust School at Nashik; Pope Paul Mercy Home,Trissur; Blind People’s Association, Ahmedabad;Navjyothi Trust Chennai; PNR Society,Bhavnagar; RAAS, Tirupathi. These organisationsprovide the centre-based training in the followingvocations:

• Carpentry

• Horticulture (Nursery Maintenance,Kitchen Garden, Potted Plants).

• Offset Press, Letter Press, Book-Binding, Xerox, Cyclostyling.

• Tailoring, Needle Work, Jute BagMaking, Knitting.

• Fabric Hand Painting, Tie and Dye,Block Printing, Candle Making, BangleMaking.

• Brick Making, Weaving, Screen Printing.

• Christmas and New Year Cards.

• Bakery, Catering, Commercial-Cooking, ‘Masala’ (Spices) processing.

• Home Management.

• Consumer Stores.

• Assembly Line Production.

• Sub-contract jobs for Airlines.

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Aims of Vocational RehabilitationProfessionals have a major role to play in

achieving vocational rehabilitation, in suitablyintegrating persons with disabilities in jobs and infostering their potential in independent living, ineconomic, personal, social and occupationalspheres.

It should also be possible to network withexisting polytechnic institutes so that they ‘include’persons with mental retardation in a specialcategory for training purposes with the curriculumincluding courses so that they fit into jobs havingthe required skills.

Recognizing the importance of systematic,structured and need based training programssuitable for employment, the RehabilitationCouncil of India has revised appropriately and putinto use its staff training program at all trainingcentres.

Initiatives of the Ministry of Labour,Govt. of India

Under the Ministry of Labour, in the 17VRCs, the Special Vocational Training andRehabilitation Centers, apart from training, basedon capability, with an IQ of 50 and above, in specifictrades, the VRCs helps in job search and jobplacement of young through their placement wing.

The Ministry of Labour also supports job-seekers with disabilities by identifying jobs forthem through enrolment in the 47 SpecialEmployment Exchanges.

In addition, the 914 regular employmentexchanges also cater to the employment needs ofjob-seekers with disabilities.

Around 70,000 job seekers have availed theservices of Special Employment Exchange for theirjob placement.

The Ninth Five Year Plan period hadwitnessed the establishment of new VRCs and anetwork of three Rural Rehabilitation Centres foreach VRC.

The Government envisages for a linkagebetween the Government and the VoluntaryAgencies involved in tertiary education andtransition to work of youth with disabilities.

Pattern of Job DistributionThere is a large concentration of services in

the urban areas. Because of the types of jobsavailable in the communities where they live andare well absorbed, persons with mental retardationin the rural areas are not under severe stress toperform beyond their capabilities, and theirexpectations are realistic in the naturalenvironment.

Since the schemes reach out to a very smallproportion of young persons with mentalretardation, most of them depend on their familiesfinancially. Some are helpful in sharing thehousehold chores or work in small measurescontributing indirectly to the efficiency,productivity and economic status of the families.

Large number of young persons with severedisabling conditions resort to charity or idleexistence.

The Persons with Disabilities (EqualOpportunities, Protection of Rights andFull Participation) Act, 1995

The Act does not provide any mandatoryprovision of job reservations for persons withmental retardation.

There is no evidence to say that the personswith mild mental retardation have been providedwith the jobs identified by the Government of Indiafor them.

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The Government has set up CoreCommittees for framing guidelines for inter-agency and inter-Ministerial collaboration foreffective implementation of the comprehensivelegislation.

Legal Rights and Other Provisions• The State legislatures are empowered to

pass legislation regarding relief for thepersons with disabilities and thoseunemployable as per Entry 9 of the StateList of the Constitution.

• Special provisions such as job quota andreservation of particular jobs for thepersons with disabilities exist.

Concessions and Benefits for Persons withMental Retardation

• Seventy five percent concession in thebasic train fare in the first and secondclass is allowed to persons with mentalretardation accompanied by an escortand to persons in groups.

• Most of the State Governments havingtheir own operated transportundertakings or corporations allowsubsidized/free bus travel in the city andrural routes including an escort.

• Preferential allotment of telephonebooths.

• A scheme of scholarships by theerstwhile Union Ministry of Welfaresince 1955 awarded to persons withdisability for pursuing education inspecial schools being run by non-government organizations operatedthrough the State Governments andUnion Territories.

• Persons with mental retardation can

receive education in the mainstreamschool system. Various allowances andannual cost of the equipments areprovided under this scheme.

• A government servant is eligible to drawChildren’s Educational Allowance whenhe/she is compelled to send his/her childwith mental retardation to a school awayfrom the station of his/her posting.

• Assistance is given to persons withdisability for purchase and fitting of aidsand appliances by the Government ofIndia.

• Most housing boards and urbandevelopment authorities have schemesof preferential allotment of plots andhousing sites to individuals withdisability.

• The Government of India, Departmentof Personnel and Training vide O.M.No. AB-1401/ 4190-Estt (R) dated 15thFebruary, 1991, makes provision for achoice in the place of posting of parentsin government service having a childwith mental retardation.

Assistance to Voluntary Organizations forthe Persons with Disabilities

• Assistance of upto 90 percent in urbanand rural areas is given to NGOs foreducation, training and rehabilitation ofpersons with disabilities.

• Emphasis is laid on Vocational Guidanceand Training.

Assistance to Voluntary Organizations forManpower Development in the Field ofCerebral Palsy and Mental Retardation

• In the case of cerebral palsy and mental

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retardation, 100% assistance is providedto voluntary organizations for trainingprofessionals and for developingorganizational infrastructure such asclass room, library/hostel, etc.

Employment in Private SectorPrivate sector organizations have to reserve

jobs for persons with disabilities as per the stategovernment orders and provisions in the PWDAct.

Violation of Employment ProvisionsAs per section 63 of the PWD Act, the Chief

Commissioner for the Disabled or the StateCommissioner for the Disabled has the samepowers as are vested in a court under the CriminalProcedure Code, 1908.

Economic RehabilitationMany persons with disabilities have benefited

under this scheme wherein Rs. 3,000 is given assubsidy linked with bank loan to start pettybusiness.

Each State has its own economicrehabilitation program such as setting up telephonebooths, awarding unemployment allowance,providing employment in the unorganized sectorand in networking with NGOs. These programsare typical for each State according to the needsand priorities.

Conclusion• In India, no unemployment allowance/

social security or any other securitybenefits are available to persons withdisabilities/caregivers, youngsters withdisabilities may take up any job offered.

• With greater awareness young peoplewith disabilities can take the availablesemi-skilled and unskilled jobs.

• Results of the initial experimentspertaining to on-the-job training andsupported integrated employment havebeen encouraging. Cost-effectiveness,promotion of dignity and improvementin quality of life through integratedwork, have brought in greater advocacyfor this approach.

• Special Employment Exchanges andSpecial Employment Cells have beenestablished by the Ministry of Labour tosupport persons with disabilities in job-search and placement.

• National Awards instituted recognizecontribution to the rehabilitationprocesses of employees with disabilities,placement officers and successfulemployers of persons with disabilities.

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Chapter 13

Research and Development in the Field ofMental Retardation in India

Introduction

The first review of research in mentalretardation in India appeared only in 1968

(Das, 1968).

Review of Literature• The Study on the ‘Feasibility of Training

Mothers at Day Care Centres forChildren with Mental Retardation-AgeGroup 3 to 6 years (1968 to 1971), acontrolled study.

• Between 1968 and 1976, there were fiftyexperimental research publications byIndian psychologists in the field ofmental retardation, with the maximumnumber (about 25%) in the year 1968.

• The first Indian Journal in the field ofMental Retardation. The OccupationalTherapy Journal, now called The Journal ofRehabilitation in Asia appeared in 1960from Mumbai.

• Another research Journal, The IndianJournal on Mental Retardation, publishedby the All India Association on MentalRetardation, Chandigarh, appeared in1968.

• A popular Journal Mental RetardationDigest is being published by theFederation for the Welfare of theMentally Retarded, New Delhi since1970.

Research in IndiaThe present section on Research and

Development in India is discussed below underdifferent categories.

Curriculum and InstructionCurriculum and instructional procedure for

persons with mental retardation has received littleattention except in the

• Preparation of skill developmentmaterial at NIMH, Secunderabad.

• Diagnostic curriculum at Amar JyotiTrust, New Delhi (Malhotra, 2001).

• Yogasanas for Persons with MentalRetardation, Madras (Jeychandran,1983).

• Upanayan Early InterventionProgramme System (1987).

The NCERT has not developed sourcebooks for mental retardation.

The serial learning procedure followed byGoel (1980) was not clear on the concept of seriallearning.

The effect of isolation on learning andmemory was undertaken by Goel and Panda(1998); it led to conflicting findings.

There is need for curriculum research inarithmetic, reading, language, social skills anddetermination of efficiency of instructionaltechniques.

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Research literature is conspicuously absentin this regard.

Learning and MemoryLong-term retention correlates with learning

and memory in persons with retardation. The moreintense and longer the learning, the better is thelong-term retention and also easier the transfer oftraining. Mainstream children did better than thosewith mental retardation of the same age in allsituations. Distractibility and attention deficits arepronounced in persons with mental retardation,but the isolation effect depends on the nature ofthe isolated items.

Behavior Modification Approach in LearningJeyachandran, et al. (1968) developed the

Madras Scale and used the behavior modificationapproach to train children under 6 years withmental retardation. Also using behaviormodification approach, Lidhoo, M.L., and Dhar,L. (1989) designed teaching and learningmethodologies for educable children. Theyreported improved achievement in adaptivebehaviours.

Jeyachandran and Vimala (1970) developedthe Adaptive Behavior Assessment Kit (ABAK) forassessment and training of persons with mentalretardation.

Peer ModelingComparing effectiveness of adult and peer

models on learning and retention of performanceskills in children with mental retardation, using alearning kit for teaching the skills developed foreducable mentally retarded (EMR) and trainablementally retarded (TMR) children, Narayan(1990) found peer modeling to be the mosteffective technique for learning performance skillsin motor, perceptual and communication areas as

compared with adult and no-model conditions forboth groups of children.

• In demonstrating home based trainingin learning, Narayan and Ajit (1991) andKohli (1988) found that parentalinvolvement and support reinforcedschool effort.

Assessment and Needs to be MetAssessment of mental retardation in India

poses serious problems because of lack of unifiedprocedure, culture appropriateness, andcomprehensiveness.

NeedThe dual purpose of assessment refer to

knowing where the child is and identifying wherehe should be taken.

The norm referenced test, such as theintelligence test, is not suitable for instructionpurposes.

Research in the field of mental retardationwith developmental approach will not providesignificant conclusions.

In the absence of growth studies, there is aneed for behavioral assessment in the field ofapplied behavior analysis, behavior modificationand behavior therapy.

Research should be change-oriented andcriterion referenced.

There is need for research on precisionteaching and formative assessment which shouldpredict future learning and growth.

Assessment ScaleDevelopment of assessment instrument

already developed by NIMH (1991) needs to betranslated for different regions for identification,placement and intervention (Panda, 1994).

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Language DevelopmentNizamie (2001) stated that some children

may have severe retardation in their languagedevelopment, but may have only mild or moderateretardation in the area of self-care or visio-spatialskills.

It is important to know, on a scale which isyet to be devised, the pattern of strengths,weaknesses and performances of such childrencorresponding to their treatment and growth.Certain patterns of performance have beenassociated more with a particular type of mentalretardation.

Inferior visio-constructive performance incomparison to verbal abilities in TurnersSyndrome, a comparatively poor visual motorintegration than simple motor skills and generallanguage skills in William Syndrome, and righthemisphere dominance for language in Down’ssyndrome have been reported.

These results suggest the importance ofevaluation and treatment by a multidisciplinaryteam.

Limitations to Intelligence TestsAvailable intelligences tests are not applicable

to a large section of children with mentalretardation for reasons that they are devisedwithout including such children in their normativesamples; they are constructed only to recognizedifferences within the normal intelligence rangeand their insensitivity to variations at low extremes.Hence, if a child’s score is below the expectedrange, his IQ has to be calculated by extrapolation.Any qualified psychologist will give an authenticreport on the psychological tests administered.

A Meaningful AssessmentIt is important in such cases to rely upon

other inputs for making a meaningful assessmentof the person’s social behavior, development andperformance ratings, etc.

In this direction, some useful work hasalready been done by eminent personalities suchas Bondy in Germany, Schopier, Reichler andDemeyer in USA and more recently by Luria andNebraska of Europe. Yet, there is lack ofstandardization.

Research aimed at developing a battery oftests which suits Indian conditions needs to beundertaken.

Available Tests in India

Panda (2001) critically analyzing the contentand psychometric properties of available tests onmental retardation emphasized the need fordiagnostic and predictive aspects of assessment ofintellectually challenged learners in India.

The analysis addressed available:

Norm-referenced assessment techniques(intelligence, developmental schedules).

Criterion referenced assessment.

Curriculum-based assessment which tracesthe child’s assessment, the Early LearningAccomplishment Profile (ELAP).

Upanayan Early Intervention ProgrammingSystem.

Portage Guide to Early Education.

Individualised Education Plan (IEP).

Integrating and Interdisciplinary Teamassessment, training objectives, monitoringand program impact; adaptive to challengedassessment (social competence); behavioralassessment tests (Basic - MR and Functionalassessment); Developmental Indices(MDPS).

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Tests in India in identifying, screening,assessing, capabilities and evaluating intellectuallychallenged learners include process-orientedmeasures, neuropsychological assessment andMalhotra’s Curriculum Based Assessment.

However, the test - Planning, Attention,Simultaneous and Successive Processing (PASS)though very useful has not been popularized inIndia for its usage.

While analyzing the reliance and validity ofsuch measures used, the shortcomings,inadequacies, built-in constraints which reduce theusefulness of the tests for use in culturally diverseIndian context have been stated.

Emerging issues and developments indiagnosis, assessment, and evaluation of personswith mental retardation and programming for themhas been viewed in the background of equalopportunity, inclusion, and remediation.

These requirements are found satisfied bythe indigenously developed test protocols –TheMadras Development Programming System, theUpanayan Early Intervention ProgrammingSystem and the Functional Assessment Check List.

Panda (2001) suggested developing a child-centered curriculum guide and a LearningAssessment Potential Device (LPAD):

• to provide continuity and acomprehensive approach for functionaland behavioral assessment;

• for giving remedial inputs based onclinical diagnosis in the areas ofsocialization, language, cognition, motor,interpersonal relationship, all of whichare directed towards independentfunctioning by persons with mentalretardation throughout the country.

This guide encompasses assessment for thecapability, pace, limits, and the inputs of learners.

A mechanism for development of such adevice is now available and in use.

Ecology: School and Family

Research on disability and particularly onpersons with mental retardation on acceptabilityin rural versus urban community have not beenundertaken so far.

Socio-psychological survey to determine therural versus urban attitudes towards acceptance ofindividuals with mental retardation in thecommunity is an indicator for the directions inrehabilitation.

Most of the research on socially deprivedchildren with low intelligence is attributed to poorsocial class and poverty. Area specific prevalence isyet to be undertaken.

A gross limitation of these studies is in itsmethodology, but the ideas are pragmatic for otherresearchers to undertake further studies.

Management and Family Studies

A pioneering study on the feasibility oftraining mothers of children with mentalretardation, age group, 3 to 6 years, in day caresettings was done in 1968 by Bala Vihar ResidentialSchool, Chennai funded by PL480-US Grant.

Five Groups were taken for the study were:

Group A – parent participation-6 months

Group B – parent participation- 12 months

Group C - without parent participation -18months

Group D - children in institutions

Group E - children with no training, noparent participation

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The findings were:

• Given the training the parents becomethe carryover agents of their children athome;

• positive attitudinal change was observedtowards their children with mentalretardation within a period of 6 months,and

• the longer the training, the moresustained is the learning in the children.

In recent years an increasing magnitude ofresearch in social sciences has focused on issuesrelating to mental retardation.

The rationale is, mental retardation is notonly a product of physiological or pathologicalcauses, but is also the result of familial, socio-economic, environmental, and many other factors.

Hence, family ecological investigation inmental retardation has become necessity.

Self Injurious Behavior (SIB)

Self injurious behavior requires immediateand intensive intervention for persons with mentalretardation and related developmental disorders.

Correlation of SIB with the degree of mentalretardation shows a prevalence of 10-15 per centamong persons with severe mental retardation.

Associated with aggressive and abusivebehavior towards family members and caregivers,this condition leads to infliction of significant harmto oneself the physical, emotional, and financialimpact being considerable.

Children with mental retardation have moreadjustment problems with their peers than themainstream adolescent children.

Social feedback reduces the adjustmentproblems for them and teaches a variety of

appropriate social behaviors (Sen, 1976).

Service Delivery System

Different service delivery systems are in usefor the education and rehabilitation of the childrenwith mental retardation.

Research on the beneficial effects ofintegrated and inclusive education systems showedsignificant interaction between children with andwithout mental retardation (Mani 1994;Jeyachandran, 1999).

The Integrated Child Development Scheme(ICDS) workers facilitated the service deliverysystem. NGOs involvement was inadequate.

All project officers and teachersrecommended the composite area approach forintegrated education.

Sociological labeling was observed in theattitudes of teachers, community members andparents, towards children with mental retardation.

In the Indian context, now children withmental retardation learn in integrated and inclusivesettings with normal peers helping, parentalattitudes change favorably; partnership betweengovernment and voluntary organization work(RCI, 2005).

Bio-Technology/Bio-Medical ResearchIn mental retardation, genetic factor is the

cause in nearly 10% of the cases. Another importantetiological factor is chromosomal abnormality.

Visible progress has been made inunderstanding the genetic basis for the occurrenceof severe to profound mental retardation.

The National Centre for Biological Sciences,Bangalore; All India Institute of Medical Sciences,Delhi; University of Delhi; National Institute of

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Mental Health and Neurological Sciences,Banagalore; University of Madras, Chennai; SriRamachandra Medical College and Research,Chennai; Tata Institute for Fundamental Research,Mumbai; Madurai Kamaraj University, Madurai;Manovikas Kendra Rehabilitation and ResearchInstitute of the Handicapped, Kolkata are some ofthe leading institutes involved in genetic researchon the various aspects of mental retardation.

It was reported at the Second InternationalConference on Early Intervention for MentalRetardation at Chennai in 2007 that a breakthroughhas been made in the laboratories engaged instudies in biological sciences— the National Centrefor Biological Sciences, Bangalore, and the MindInstitute, California, USA.

Mental retardation with associated physicaland behavioral conditions occurs due to bothgenetic and environmental causes (Singh, 2001).However the genetic changes which occur in a largenumber of specific disorders have not yet beenidentified.

Multifactorial inheritance reflects theadditive effects of several minor geneticabnormalities and minor environmental factors.

With the availability of the complete DNAsequence of the human genetic material, it will bepossible to identify deviant genes in affectedindividuals in the near future.

Mind’s College of Special Education, Mumbai

Chromosomal analysis was carried out in2,002 subjects over a period of 13 years. Parentsand siblings of positive cases were also included.

Various epidemiological factors such asparental ages, consanguinity, level of intellectualfunctioning, family history, dysmorphic featureshave been analyzed under various groups, e.g.,

Down Syndrome, Fragile X Syndrome and otherchromosomal and syndromes.

• The possible role of these factors, if any,in the causation are known now. Therarer aberrations and their clinicalcorrelation have implications for futureresearch.

There are a few biotechnological andbiomedical research studies in addition to what hasbeen done in cases with phenylketenuria (PKU )by Krupanidhi and Punekar (1963, 1966) and inthose with nutritional deficiency and cognitivedevelopment (Dutta, T.).

Bio-chemical screening of children afterbirth and special diet schedules would go a longway in reducing the occurrence of mentalretardation in India.

Intervention ResearchAnita Ghai and Anima Sen (1992) studied

the choice behavior of persons with high and lowmental retardation using different games anddifferent forms of recreational acts as means ofeducating the children with retardation.

The results are analysed in terms ofcooperative and competitive stance utilized by thechildren with mental retardation and are discussedin relation to their implications for training andeducating the persons with mental retardation.

The Madras Project (1968), an experimentalstudy on the feasibility of involving parents intraining their children with mental retardationindicated an attitudinal change in a shorter timeand the parents as being effective as carryoveragents.

The Upanayan Early Intervention (1987), afterelaborate field tests, its modules were foundworkable and suitable in its applications.

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Parikh (1992) reported on Infant StimulationPrograms for children with mental retardation andwith parental involvement for those unable tobenefit from mainstream education. Activities andcontent material beyond the range of the regularcurriculum offered in the schools to encompasslife skills and functional skills have to be provided.

Pati, Kumar, and Mohanty (1997) exploredthe effectiveness of a package program consistingof sitting at the left hand side of the subject, verbalinstruction (attend your task), and secondaryreward, on the task attention of the persons withsevere mental retardation, in a class room setting.Significant improvement was seen in the behaviorof all subjects with a relapse after withdrawal ofthe intervention package.

Other Recent Empirical Studies

A significant improvement in self help skillsin the children, an increased awareness among thecommunity and school teachers on the importanceof training and a positive attitude were theoutcomes of a CBR program on children withmental retardation, their families and community(R. Madhumathi, 2005).

Sharma ( 2007) showed improvement in thefrequency of attacks and in general health,following augmentative therapies—pranic healing.

Subhodh Kumar (2007) found that usingappropriate behavior modification techniques,problem behaviors can be changed/eliminated andthose in inclusive settings are less problematic.

Intervention research studies are, however,limited.

The Group Home ExperimentIn group homes, there are living

arrangements where a small number of mentally

handicapped persons live together in a communityunder supervision and get trained effectively.

The initial supervision provided by an in-house parent gradually fades into a manager systemwherein one person co-ordinates the Care Staffpersonnel in shifts. A feeling of participation isencouraged while managing all the householdchores. Thus, social and educational training, andlearning to use money through actual transactionshas fostered a high degree of independencesuccessfully.

Krupa, a residential home for adult personswith mental retardation and associated disabilitieswas established in 1999 at Sriperumbudur underthe auspices of the Dayananda- B.D.Goenka Trust.

A community based small group home, thecurriculum at Krupa follows a Gurukulam patternwith less stress, yet following, an individualizedprogram in the care and management of theresidents.

SwayamkrushiThe main aim was to provide training

through actual experiences of operating in a socialzone, in commercial centres, at social functions andin other group activities like self-organized picnicsand other leisure time activities.

Along with hygiene, training on householdchores has confirmed success of this program(Kalyan, 1992).

This system is one of the pioneering effortsin India.

There are eight girls between the age groupof 16 to 21 years who have been integrated intosociety successfully.

A powerful review mechanism has been in-built into the program. The methodology adoptedis as follows:

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• The house teachers meet once in threedays with the ongoing evaluations.

• These progress reports are reviewed bythe director in a combined performancereview meeting with all the staff.

• Necessary amendments/changes in thetraining program are made and executedwith advice from other specialists whenneeded.

• Most important is sending the individualback to his/her residential environmentfor a short period during which theparent is guided and counseled abouthome training and on the points onwhich he should report back.

• On account of reports of enormousimprovements, parents of individualswith mental retardation approached theorganizers to start more such grouphomes in different locations in the cities.

• The complex of ten units are located inresidential colonies, near shopping unitsor small commercial centres where‘small’ employment opportunities and“on the job” training are convenientlyavailable, areas which are well connectedby bus routes.

It can be concluded that such programs aremost essential in the rehabilitation of the adultswith mental retardation.

A few outstanding examples of GroupHomes run in the above manner are: Thakur HariPrasad Institute, Hyderabad; Sweekar, Hyderabad;

Central Institue for the Mentally Handicapped,Tiruvananthapuram; Mrs J.Vakil School, Sewri,Mumbai; Hari Mohan Singh Home in Dist.Burdwan, West Bengal; Amar Seva Sangham,Ayyakudi, Tamil Nadu; CSI Home for theMentally Retarded, Sakshiyapuram, Siva Kasi,Tamil Nadu; Asha, Bangalore, Karnataka.

Development of Instructional Materials• A Guide Book for Teaching Yoga for

Persons with Mental Retardation (1983)developed for the use of specialeducators, can be used by any oneinterested in teaching yoga for personswith mental retardation.

• Research and development activitieshave taken rapid strides after the NPE1986 came into force and theestablishment of the National Institutefor the Mentally Handicapped atSecunderabad.

Similarly, non-governmental organizations(NGOs) like Thakur Hari Prasad Institute (THPI)Hyderabad; Amarjyoti, Delhi; Vijay HumanServices, Chennai; Mano Vikas Research Institutefor Handicapped (MRIH), Kolkata have alsobrought out innovative booklets for the benefit ofpersons with mental retardation.

These documents taken together representsignificant contribution as well as wide range ofactivities relating to early intervention, skilldevelopment, instruction, employment andmainstreaming.

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Chapter 14

Current and Emerging Issues

Introduction

With more awareness on the need for efficientcare and management systems in early

intervention, school education, vocational training,employability and independent living, parents havebeen demanding for more satisfactory need-basedservices in their areas.

With legislation in place, it has now becomemandatory to provide an array of appropriateservices as a matter of right, to persons with mentalretardation.

Empowerment

The Rights Based Approach with Result OrientedSupport Systems

A rights based approach is based onempowerment, equality of entitlement, dignity,justice, and respect by all people.

It encourages persons with disabilities, theirparents/caregivers to demand quality service,according to their priorities, thereby raising theirself-esteem and promoting autonomy. It impliesthat society becomes obligated to enable people toenjoy their rights, but with mechanisms whichwould redress any grievance when quality servicesare not given.

Legislation

The Persons with Disabilities Act, 1995India was the first country to be a signatory

to the Proclamation on the Full Participationand Equality of People with Disabilities in theAsian and Pacific Decade of Disabled Persons,1993 -2002.

In January 1996 an Act of Parliamentenabling implementation of this Proclamation waspassed –The Persons with Disabilities (EqualOpportunities, Protection of Rights and FullParticipation) Act, 1995.

Two other legislations, the RehabilitationCouncil of India Act, 1992 and the National TrustAct, 1999 have included training and guardianshiprespectively in their clauses.

Looking AheadIn the provision of services to persons with

mental retardation, the main concern is, where wehave been, where we are today, and where we will be inthe future.

According to Cain and Taber (1987) threeelements are of importance in defining therelationship with the past and that of the presentand the future. They are:

• Continuity where the future is alwaysinfluenced by the past and the present.

• Change where the future is alwaysinfluenced by the unexpected events thatbreak the continuity of history.

• Choice where the future is alwaysinfluenced by the choices that people

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make when confronted with a newdevelopment.

Changes and influences of the society alsoaffect the relationship between the present and thefuture.

Pressures on persons with mental retardationvary significantly according to the demands of thesociety. The future trend, therefore, projects aneveryday life which will become more demandingand technologically more sophisticated.

The impact of this trend will be felt on thenature of work which will become moretechnological, more automated, with more jobsbeing made available in the service industry.

Persons with mental retardation may livelonger consequently requiring a continuum ofhealth services.

In planning from their childhood toadulthood, there is a need for the provision of aresult-oriented array of services ranging from earlyintervention to life as an adult.

The Array of ServicesA convergence of the interdisciplinary team

of experts in assisting the parent and the familymembers of the child with disability for inclusionin the mainstream to ensure quality life to personswith disability has been brought about.

A Holistic Approach

The array of services available in the country isexhaustive, encompassing all facets of education,medical, and social needs, required for a holisticapproach to the habilitation and rehabilitation ofpersons with mental retardation, keeping in mindthe person as a whole.

Much thought has to be given to humanservices departments in selecting, screening,

training, directing, motivating and supervising theright personnel to be part of organizations.

Academia are doubly responsible in this taskof considering every aspect of the services, not onlyin the framing the policy for the welfare of thepersons with mental retardation, but also in itsimplementation that it blends well with thenational ethos.

Networking with the departments of health,education, human resource development andemployment, interacting with the players in thefield towards a smooth spread of services as well asin the continued quality maintenance will have tobe the vision of the service providers.

Current and Emerging IssuesApplication of technology in the array of

services provided to the persons with disabilitieshas to suit the persons in the settings they live in,whether rural or urban making their lives morecomfortable, more productive and more selfenhancing.

Technology in the Digital AgeThe benefits of technology-based socio-

economic progress had invariably got unevenlydistributed in society, resulting in widening thedivide between the haves and the have-nots.

In the digital age, the key to the informationsociety is universal access, with all having equalopportunities to participate and no one beingdenied of any benefit from the available technology,particularly the persons with disability.

The Conference on ‘InformationTechnology Enablers for Persons withDisability’(INTEND-2001)

The Conference on ‘InformationTechnology Enablers for Persons with Disability’

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(Intend-2001) conducted at national level, atChennai, by IT Technologists, was an effort to‘have a fresh look at new possibilities andpromises of Science and Technology, morespecially, the dominant Information Technology oftoday. Since then, there has been a sea change inthe development of technology for enablingpersons with disabilities, but it is yet to reach themasses in ways, affordable and accessible.

The basic question asked at the Conference‘How can technology be made more human andhumane?’ still remains to be answered moreexpansively.

The focus of the World Telecommunicationand Information Society Day (May 17) is thereforeon ‘Equal Opportunities and Participation in theDigital Age for Persons with Disabilities.

Developments–2001 to 2008The developments that have taken place in

the past decade in the area of InformationCommunication Technology have enabled asection of the population of persons withdisabilities to lead a more enriched life than before.

Today, electronic banking, online shopping,e-mailing, electronic document processing, andother computer-related resources andcommunication products are available for personswith disabilities, again only to a section of thepopulation. Soon, technological facilities shouldreach out to persons with mental retardation as well.

Technology for People with Mental Retardation andAssociated Disabilities

Assistive Technology (AT) can be a device or aservice. An assistive technology device is any item,piece of equipment, or product system, that is usedto increase, maintain, or improve functionalcapabilities of individuals with disabilities. An

assistive technology service means any service thathelps an individual with a disability select, acquire,or use an assistive technology device (AssistiveTechnology Act of 2004).

Technology for the Benefit of People with MentalRetardation and Associated Disabilities

Kelker (1997) developed the following listindicating that assistive technology may beconsidered appropriate when it does any or all ofthe following things:

• Enables an individual to performfunctions that can be achieved by noother means.

• Enables an individual to approximatenormal fluency, rate, or standards – alevel of accomplishment that could notbe achieved by any other means.

• Provides access for participation inprograms or activities which otherwisewould be closed to the individual.

• Increases endurance or ability topersevere and complete tasks thatotherwise are too laborious to beattempted on a routine basis.

• Enables an individual to concentrate ontasks—learning/employment, ratherthan mechanical tasks.

• Provides greater access to information.

• Supports normal social interactions withpeers and adults.

• Supports participation in the leastrestrictive educational environment.

Use of Technology for Persons with MentalRetardation

• Communication

Augmentative and AlternativeCommunication (AAC) ranges from low-tech

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message boards to computerized voice outputcommunication aids and synthesized speechfor those who cannot use vocalcommunication.

• Mobility

Simple to sophisticated computer controlledwheelchairs and mobility aids help indirection-finding and guiding users todestinations. Computer cueing systems androbots have also been used to guide users withintellectual disabilities.

• Environmental control

Assistive technology can help people tocontrol electrical appliances, audio/videoequipment such as home entertainmentsystems or to do something as basic as lockand unlock doors.

• Activities of daily living

Technology is assisting people with disabilitiesto successfully complete everyday tasks of self-care. Examples: automated and computerizeddining devices allow an individual to eat moreindependently.

• Audio prompting devices may be used to assista person with memory difficulties to completea task or to follow a certain sequence of stepsfrom start to finish.

• Video-based instructional materials can helppeople learn functional life skills such asgrocery shopping, writing a cheque, payingthe bills or using the ATM machine.

Enabler and Communications Technology–Technology in Extending the Reachof Education

Technology for EducationToday methodologies, specific to each type

and degree of disability have been developed/madeavailable as part and parcel of an integrated

educational system to aid communication, supportactivities of daily living and to enhance learning.Computer-assisted instruction can help in manyareas, including word recognition, mathematics,spelling and even social skills. Computers have alsobeen found to promote interaction with non-disabled peers.

Staff training and service providingorganizations are enabled, both in government ornon-government sectors, to develop programsbeginning from early detection/intervention toadult independent living by means of audio-visualpresentations, education satellite communicationnetwork, available freely and in local languages.Distance mode education programs have also beenmade accessible through this communicationsystem.

The distance mode of education provided byIndira Gandhi National Open University(IGNOU), the Rehabilitation Council of Indiawith M.P. Bhoj Open University, Centre forAdvanced Computing (C-DAC) provide qualityeducational material in all the local languages, acommendable national initiative.

Technology is available in local languages,though not yet, at low cost or no cost. Based onthe socio-economic need and the affordability ofthe persons with disability, many more productsof utility in the public domain need to be madeavailable on large scale.

The Education Satellite: EDUSATThe Education Satellite: EDUSAT,

organized and implemented by the RCI has beenfunded by Media Lab Asia which is under theMinistry of Information and Technology.

The IGNOU, the RCI and the Sarva SishkaAbhyan established satellite education programswhich have imparted training to the professionals,

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persons with mental retardation and their parents.The non-availability of master trainers has beensolved to some extent with introduction of thismode of special education.

Computers with web cameras, computers onnetworks have given easy access to tele-consultation services for intervention programs,though it is yet to become more popular all overthe country.

Technology for EmploymentVideo-assisted training is being used for job

training and job skill development and to teachcomplex skills for appropriate job behavior andsocial interaction. Prompting systems using audiocassette recorders and computer-based promptingdevices have been used to help workers stay ontask, the latter, computerized prompting systems,helping people manage their time in schedulingjob activities.

Innovations in designs and manufacturingprocesses are under the constraints of copyrightand patent law in respect of products for thepersons with disabilities and they are not thereforeeasily available or affordable.

These innovations will enhance the qualityof life of the person with disability both at homeand place of work in the type of job to be performedat every ‘reserved’ employment facility for thepersons with disabilities. Greater efficiency will beensured in the performance of the job and thereforethere will be increased productivity.

Technology for Sports and RecreationToys can be adapted with switches and other

technologies to facilitate play for children.Computer or video games provide age-appropriatesocial opportunities and help children learn

cognitive and eye-hand coordination skills.Specially designed software can help people withintellectual disabilities access the World Wide Web.Exercise and physical fitness can be supported byvideo-based technology.

Technology and Medical ServicesAdvances in biomedical technology are

already revolutionizing services to persons withmental retardation.

The Human Genome Project is aconcentrated, multinational effort to identify thelocation and function of all parts of the humangenetic code.

Of the approximately 4,434 genetic disordersthat affect people, mental retardation is believedto be a prominent feature in 448(10%) (Moser,1992).

Medical research in brain functions,including neural network simulations, genetics andgenetic engineering are being carried out at nationalresearch institutions.

Suited to the Indian context, research, designand development of affordable assistive andaugmentative devices need to be undertaken suchas the Hawking Communicator or the Computer.

Barriers to Technology Used by Personswith Mental Retardation

The ARC in a survey (Wehmeyer, 1998)found that the main barriers regarding the deviceswere lack of information on the availability andassessment, cost, complexity of the devices, andlimited training in their use.

Even though it is the goal of most technologydevelopment efforts to incorporate the principlesof universal design, cognitive access is not carefullyconsidered.

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Universal design ensures that the technologymay be used by all people without the need foradaptation or specialized design.

An example of cognitive access would be ifsomeone with disabilities is using a computerprogram, on-screen messages should last longenough or provide wait time to consider whetherto press a computer key.

The time between dialing and pressing thenumerals should be sufficient to complete a phonecall using a rechargeable phone card as payment.However, individuals with intellectual disabilitieshaving a range of learning and processing abilities,it is difficult to develop assistive technologysolutions that are universal.

Coordinated Efforts–Governmental andNon-Governmental Organizations

In view of the vast multiplicity of agenciesthat would inevitably be involved in theimplementation of the technology benefits to thepersons with mental retardation, a coordinated andsustained effort is needed by both the governmentaland non-governmental organizations.

A barrier-free environment is yet to be madeavailable at all public places for persons with mentalretardation and associated disabilities andlocomotor disabilities.

• Facilities for comfortable travel even forshort distances and for transporting thewheel chair are also not commonlyavailable.

• Wheelchair usage, relating to posturalstresses, call for sustained research,development and design activities.

• Demand for walkers, motorized or self-propelled, may increase for use bypersons with disabilities and the aged.

• Kerb-cuts and wheel chair usable roadsand pavements are yet to be facilitated.

• Not all public buildings are disabled-friendly.

Provision of ramps, wide doorways,avoidance of split levels, provision of Braillesignboards, toilet facilities, special locking andunlocking systems, are not prioritized or mademandatory.

Only in specific situations and only as a resultof litigations the transportation and conveyance—bus, rail and air has been made accessible to personswith disabilities.

Possibilities of building wireless signals intolamp posts, signal posts which could providepositional, locational and directionalinformation to road and pavement users throughpersonal devices that incorporate navigationalfacilities are yet to make a beginning.

Providing Needed Assistive Technology toPersons with Mental Retardation

With legislation in place, it is recognized thatpersons with mental retardation need technologyto be able to learn. Therefore, the schoolauthorities, should, in the near future

• Evaluate, acquire and coordinate thenecessary technology with othertherapies and interventions.

• Provide training for the individual, hisfamily, and the school staff in theeffective use of the technology.

In addition, if the person’s individualizededucation program specifies that AssistiveTechnology is needed for home use, the schoolmust own and provide the device until he movesto another school.

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Research on Computers in SpecialEducation Needed

Some areas identified

• The effect of the level of cognitivedevelopment in children on theunderstanding of working with thecomputers.

• The most appropriate age, and the bestway to introduce computers into theeducational process and theprogramming languages to be taught.

• The preference of one particular subjectover the other for integrating computerbased learning into the curriculum.

• The most appropriate uses for computergraphics in the educational process.

• Developing new and better computerenriched instruction materials.

• The impact of computer interactions onstudent’s learning skills (i.e., effect onthe learners attention span, his/her abilityto learn independently, etc.), its impacton a child’s natural languagedevelopment and socialization.

• Computers as a means of instruction (anelectronic tutor), and end of instruction(as in computer literacy), and, as apersonal productivity tool to helpstudents produce traditional writtenmaterials more efficiently.

ChallengesResearch on computer based education may

also differ from the traditional research ineducation or in computer science which needs tobe considered in evaluating research in a new area.

Currently, the use of technology is associatedwith therapy and in education as aids for personswith mental retardation which will become widerin scope and more encompassing in its dimensions.

Technology will be increasingly applied inthe manufacture and use of assistive devices inenhancing the person’s cognitive skills, and infacilitating independent living through themanagement of adaptive behavior.

ConclusionTechnological advances in general education

and more so in special education is of recentoccurrence.

The Department of Education launched apilot project on computer literacy in 1985 in anumber of regular schools. Presently in a numberof States, regular school education includescomputer literacy as part of curriculum (Dutta,1986).

Word processor programs in Indianlanguages have been developed for wider reach.

Production of adapted peripherals andadd-on devices with indigenously developedsoftware are rapidly increasing to suit the need ofthe persons with disabilities.

Experts who contributed to the section on Mental RetardationProf. P. Jeyachandran (Editor)

Mr. J. P. GadkariDr. S. K. Mishra

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