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 Table of Contents    
GUEST EDITORIAL  
Year : 2014  |  Volume : 56  |  Issue : 2  |  Page : 113-116
Intellectual disability in India: Charity to right based


1 Department of Psychiatry, Government Medical College and Hospital, Regional Institute for the Mentally Handicap, Chandigarh, India
2 Department of Psychiatry, Shaheed Hasan Khan Mewati Government Medical College, Nalhar, Haryana, India

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Date of Web Publication11-Apr-2014
 

How to cite this article:
Chavan B S, Rozatkar AS. Intellectual disability in India: Charity to right based. Indian J Psychiatry 2014;56:113-6

How to cite this URL:
Chavan B S, Rozatkar AS. Intellectual disability in India: Charity to right based. Indian J Psychiatry [serial online] 2014 [cited 2020 Feb 23];56:113-6. Available from: http://www.indianjpsychiatry.org/text.asp?2014/56/2/113/130477


According to the Census 2001, [1] there are 21 million people with disabilities in India who constitute 2.13% of the total population. In contrast, the National Sample Survey Organization (NSSO) estimated that the number of persons with disabilities in India is 1.8% of the Indian population; [2] of which 75% of persons with disabilities live in rural areas, 49% of them are literate and only 34% are employed. Both the surveys included the persons with visual, hearing, speech, locomotor, and mental disabilities, but the distribution in each category according to the two surveys differs drastically. However, experts working in the field of developmental disabilities feel that prevalence of mental disability is much higher. [3]

Intellectual disability (ID) is characterized by significant impairment in cognitive and adaptive behavior. The term used to describe this condition has gone under constant change over the years due to social and political compulsions. The main reason to search for a new term is to find a least stigmatizing terminology. Thus, mental retardation, which was in use world over till late 20 th century, has now been replaced with ID in most English speaking countries. Diagnostic and Statistical Manual 5 th Revision (DSM-V) has replaced it with ID and the much anticipated 11 th revision of International Classification of Disease is likely to do so. [4],[5]

The history of ID has passed through a very turbulent phase and can be briefly summarized under: i) Pre-industrialization phase: From the dawn of civilization to the beginning of industrialization period, people born with "abnormal" physiognomy were treated with fear or ridicule (and perhaps continue to do so in many societies). ii) Industrialization phase: Although industrial revolution is associated with increasing wealth and productivity, it also brought in many ill effects. Migration to bigger cities led to development of slums, poverty, diseases, and crimes. Families started valuing those with vocational ability and started neglecting members who were not able to work. The individual who had low intelligence were left out and were labeled as feeble-minded, degrading, and stigmatizing. iii) Humanitarian approach: In 1846, Dr Samuel Gridley Howe from Boston persuaded Massachusetts Legislature to appoint a commission to inquire into the condition of 'idiots'. After survey and close study, he for the first time observed, "These are the proper subjects of education, they can be taught to do some kind of labor and they can be made self-sufficient". [6] It led to many state run schools for these persons. However, these schools were a failure because Howe and his fellows (Sequin and Wilbur) were too optimistic, unrealistic in expectations as they expected to restore all 'idiots' to normal functioning. iv) Demonology of the defectives: The scientific developments of Darwinism, sociological approach, Mendelian theory of genetics, and Binet psychometric tests advocated, directly or indirectly that feeble minded individuals, who could be easily identified and quantified, are risk to the society. Thus, the society started thinking ways to prevent feeble mindedness from occurring and working on ways how to control those in whom it did occur. The segregation seemed to be the best method where feeble minded could be cheaply and wisely cared for along with prevention and societal protection. v) Period of John F Kennedy: In 1963, based on recommendations of President's Panel on Mental Retardation, JF Kennedy made a speech to the Congress of United States and asked for new resources to address the needs for people with mental retardation. Soon, virtually every state launched special educational programs for these persons. [6]

Currently, the term ID is being used instead of mental retardation. This transition in terminology is supported by organization like the American Association on Intellectual and Developmental Disabilities (AAIDD), International Association for the Scientific Study of Intellectual Disabilities (IASSID), and President's Committee for People with Intellectual Disabilities.


   Assessment of Degree of Disability Top


The purpose of assessment of degree of disability include educational needs, seeking benefit from the center and state sponsored welfare schemes as well as for the purpose of legal capacity to stand trial in the court of law. Before launch of first psychometric tests by Binet in 1912, individuals were assessed clinically for measuring their capacity of reasoning and problem solving. However, later many tests for measuring intelligence were manufactured and the score was converted into intelligent quotient (IQ). Based on the scores of these test, ID is divided into mild (IQ 50-70), moderate (IQ 35-49), severe (20-34), and profound (IQ < 20) categories. IQ has been used as the sole criteria for deciding educational programs for these children. However, the educationists felt that IQ had many limitations and did not predict performance in large number of children. [7]

The enactment of Persons with Disabilities (Equal opportunities, Protection of Rights, and Full Participation) Act 1995 (PWD Act, 1995), which is a revolutionary act in India, brought the field of disability from being a charity based initiative to right based movement through its focus on protection of rights, inclusive education, job reservation, protection of employment, and social security measures. The disability benefits are available only to those having more than 40% disability, and thus, need was felt to calculate the degree of disability.

In 1998, Director General of Health Services, Government of India, gave guidelines for converting IQ into degree of disability as: Borderline ID (IQ 70-79) = 25% disability, mild ID (IQ 50-69) = 59% disability, moderate ID (IQ 35-49) = 75% disability, severe ID (IQ 20-34) = 90% disability, and profound ID (IQ < 20) = 100% disability. In case of multiple disability, the total disability can be arrived using the formula a + b (90 - a)/90, where "a" will be the higher score and "b" will be the lower score of two different disability in the same person. [8]

To assess the severity of autism, National Institute for the Mentally Handicapped (NIMH), Hyderabad, has developed Indian Scale for Assessment of Autism (ISAA) for the purpose of issuing disability certificates for autistic children. ISAA has 40 items divided under six domains and each item is rated from 1 to 5, the higher score means more severity. A score of <70 indicates no autism, 70-106 (mild autism), 107-153 (moderate autism), and >153 (severe autism). The scale is freely available on the internet. [9]


   Legislation in Relation to Id Top


In addition to PWD Act 1995, another important act, the National Trust Act (1999) was enacted for persons with mental retardation, autism, cerebral palsy, and multiple disabilities. The main focus of the act is to enable and empower the persons suffering from above mentioned four disabilities to have independent living with their own family, supporting registered organizations to provide need-based crisis services to the families of the persons with disability, to provide care and protection in the event of death of parents or guardian, and simplifying procedure for appointment of guardians through Local Level Committee (LLC). Rehabilitation Council of India (1992) further played an important role by regulating training programs and courses in the field of disability and through maintaining Central Rehabilitation Register of all qualified professionals in the field of disability. United Nations Convention on the Rights of Persons with Disability (UNCRPD) promotes, protects, and ensures the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and promotes respect for their inherent dignity. Since India was among the first countries to ratify the UNCRPD (2007), all the Acts are being amended in order to have conformity with the provisions in it.


   Guidelines for Issuing Disability Certificate Top


In order to simplify and streamline the procedure for issuing disability certificates to the persons with disabilities, the Central Government in December, 2009 amended rules and simplified the procedure for issuance of Disability Certificate. The amended rules replaced "medical board" by "medical authorities", to be notified by the appropriate government. The state governments were asked to take out notification in this regard. In the revised guidelines, in respect of obvious disabilities, the disability certificate can be issued at the level of Primary Health Centers (PHCs), Community Health Centers (CHCs), and hospitals at the subdivisional level and the disability certificates can be issued by a single specialist and only in case of multiple disabilities, a multi-member board would be required to issue the certificate. In addition, provisions have been made for taking services of nongovernment specialists in case these are not available in government hospitals. Ministry of Health and Family Welfare have since issued notification for medical authorities for central government hospitals/institutes for issuing disability certificates for various kinds of disabilities. So far, the state governments of Bihar, Goa, and Gujarat have already issued notification appointing medical authorities.


   Educational Facilities Top


The education for children with ID has evolved from no education to special education, integrated education to present day inclusive education. The inclusive education offers education to each child irrespective of the disability and social class and the model has been backed by social model of disability which is reflected in PWD Act, 1995 and UNCRPD, 2007. Initial resistance from normal schools, which was based primarily on misconceptions, has been replaced by acceptance to have a "child with special needs" (CWSN) in normal class. Schools also benefit with the availability of additional resource persons who act as back up support to the school teacher. The Right of Children to Free and Compulsory Education (RTE) Act, 2009, under Article 21-A, guarantees that every child between 6 and 14 years has a right to full time elementary education and this also includes CWSN. The experts working with CWSN feel that children with mild to moderate category will definitely benefit from inclusive education. However, the children with more severe forms of disability will require to be taught in special schools or through home based programs. In addition to reduction in stigma, the CWSN are expected to have better development in the inclusive set up. Sarav Shiksha Abhiyan (SSA) has played a significant role in the education of CWSN.


   Employment Top


Since the ultimate aim of education is to provide opportunity for employment, the vocational training is crucial for employability. Most schools as of now do not provide vocational training facilities. While majority of CWSN with mild to moderate category will be able to acquire primary to middle qualification, they may be benefited from short courses under Modular Employable Scheme (MES) of the Ministry of Labour, Government of India specially if offered within the educational premises. At the entry level, MES requires minimum formal education and each course has specified duration. Regional Institute for Mentally Handicapped (RIMH), Chandigarh which is looking after more than 400 children with ID, autism, cerebral palsy (CP), and multiple disability has developed a functional checklist for comparing formal education with functional capacity and the Directorate of Training and Employment, Ministry of Labour, Government of India has agreed to provide flexibility in the duration of MES courses.


   Prevention Strategies Top


Prevention of ID is possible through improved antenatal care, antenatal screening for common disorders which can cause disability later in life. Genetic Centre at Government Medical College, Chandigarh, is the first public hospital to start antenatal and newborn screening program. [10] The antenatal screening include screening for Down syndrome and neural tubal defects, while new born screening through heel prick method includes congenital adrenal hyperplasia (CAH), congenital hypothyroidism (CH), and glucose-6-phosphate dehydrogenase deficiency (G6PD) deficiency. Depending upon the prevalence of genetic and chromosomal disorders in different communities and availability of funds, it is possible to screen for more disorders. In a study carried out at RIMH (unpublished) to find out common causes of ID, approximately 38% of the cases of ID are caused due to perinatal causes including birth trauma, delayed cry, childhood infections, and dehydration. Universal Immunization Programme, particularly the use of measles, mumps, and rubella (MMR) vaccine and is still very crucial in the prevention of ID. [11] Follow-up of 'high risk' infants for early intervention must be considered. Thus, there is huge scope of prevention of these avoidable and treatable causes. Prenatal screening of high risk cases and newborn screening for inborn errors of metabolism should be included in the Reproductive and Child Health Program and Nation Rural Health Mission. [12] The cases which could not be prevented through primary prevention must be identified early through community outreach programs and Aanganwadi Workers (AWW) under Integrated Child Development Scheme (ICDS). Early Intervention Program (EIP) through early stimulation can play crucial role in minimizing the influence of disorder in causing disability.


   Research Top


Scientific research in developmental disability in India has been predominantly in the form of case reports of various rare disorders using latest genetic techniques. Interestingly, most etiological research publications in this field have been in non-psychiatric journals as if this domain has been disowned by psychiatrist. Few studies have looked at prevalence of mental disability and ID in the community which have shown remarkable findings. For example contrary to NSSO finding of 2.1% prevalence of all-cause disability, [2] other surveys have reported up to 6.3% prevalence. [3],[13] This variability in findings is due to different definitions used for disability. Screening tools have been developed to identify disability in children [14] and specifically ID in children [15] with sound psychometric properties. Comorbid psychiatric disorders in ID, using the ICD-10, were reported by Lakhan (2013) with 80% of those with ID having behavioral problems, while epilepsy being the second most frequent comorbidity. [16] Despite the significant prevalence of comorbid disorders, pharmacological intervention-based studies are very few. There is no clear documentation for use of psychotropics/mood stabilizers in behavioral problems associated with ID.

Under UNCRPD, persons with ID have fundamental rights to be heard and recognized which can be summed up as, 'even if I cannot speak, it does not mean that I do not have anything to say'. Under article 12 of UNCRPD, persons with disability including ID enjoy legal capacity on equal basis with others and they cannot be arbitrarily deprived of legal capacity, and thus, decision on the behalf of person with ID should be coherent and should reflect holistic view of the person. In order to protect the rights of persons with ID, the IASSID identified the need for a position statement on research and ethical review issues with research projects affecting and involving people with ID. [17] Research proposals need to take into account cultural diversity among participants and using cultural fair investigating tools in order to maintain the scientific rigor of the research protocol. The researchers must promote partnerships between researchers and people with ID, together with their families, advocates, and local communities while developing research projects. As an ethical requirement, researchers should also develop strategies to both communicate findings to participants and their communities in the manner and language understood by the community. The research team should also try to translate these findings into actions for the benefit of the participating community.

 
   References Top

1.Census of India. Disabled population by type of Disability, age, sex and type. New Delhi: Registrar General Office; 2003.  Back to cited text no. 1
    
2.National Sample Survey Organization. Disabled persons in India: NSS 58 th round (July-December 2002). New Delhi: National Sample Survey Organization and Ministry of Statistics and Programme Implementation Government of India; 2003.  Back to cited text no. 2
    
3.Ganesh KS, Das A, Shashi JS. Epidemiology of disability in a rural community of Karnataka. Indian J Public Health 2008;52:125-9.  Back to cited text no. 3
[PUBMED]  Medknow Journal  
4.American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. 5 th ed. Washington DC: APA Press; 2013.  Back to cited text no. 4
    
5.Salvador-Carulla L, Reed GM, Vaez-Azizi LM, Cooper SA, Martinez-Leal R, Bertelli M, et al. Intellectual developmental disorders: Towards a new name, definition and framework for "mental retardation/intellectual disability" in ICD-11. World Psychiatry 2011;10:175-80.  Back to cited text no. 5
    
6.Presidents Committee on Mental Retardation. Mental Retardation: Past and Present [Internet]. Washington DC: US Government Printing Office; 1977. Available from: http://mn.gov/mnddc/parallels2/pdf/70s/77/77-MR76-PCMR.pdf [Last cited on 2013 Oct 7].  Back to cited text no. 6
    
7.Greenspan S. Functional concepts in mental retardation: Finding the natural essence of an artificial category. Exceptionality 2006;14:204-24.  Back to cited text no. 7
    
8.National Institute of Orthopaedically Handicapped. Disability (Permanent physical impairment): Assessment and Certification [Internet]. Kolkata: National Institute of Orthopaedically Handicapped. Available from: http://ips-ap.org/Disability_Evaluation.pdf [Last cited on 2013 Oct 7].  Back to cited text no. 8
    
9.National Institute for the Mentally Handicap. Indian Scale for Assessment of Autism [Internet]. Secunderabad: National Institute for the Mentally Handicap. Available from: http://wcdsc.ap.nic.in/documents/autism.pdf [Last cited on 2013 Oct 7].  Back to cited text no. 9
    
10.Kaur G, Srivastav J, Kaur A, Huria A, Goel P, Kaur R, et al. Maternal serum second trimester screening for chromosomal disorders and neural tube defects in a government hospital of North India. Prenat Diagn 2012;32:1192-6.  Back to cited text no. 10
    
11.ICMR task for on prevention of disability among pre-school children. Prevention of disability in children. ICMR Bull 2007;37:9-14.  Back to cited text no. 11
    
12.Dave U, Shetty N, Mehta L. A community genetics approach to population screening in India for mental retardation- a model for developing countries. Ann Hum Biol 2005;32:195-203.  Back to cited text no. 12
    
13.Singh A. Burden of disability in a Chandigarh village. Indian J Community Med 2008;33:113-5.  Back to cited text no. 13
[PUBMED]  Medknow Journal  
14.Chopra G, Verma IC, Seetharaman P. Development and assessment of a screening test for detecting childhood disabilities. Indian J Pediatr 1999;66:331-5.  Back to cited text no. 14
    
15.Mammen P, Russell PS, Nair MK, Russell S, Kishore C, Shankar S. Development and psychometric validation of the Brief Intellectual Disability Scale for use in low-health resource, high-burden countries. J Clin Epidemiol 2013;66:30-5.  Back to cited text no. 15
    
16.Lakhan R. The coexistence of psychiatric disorders and intellectual disability in children aged 3-18 years in the barwani district, India. ISRN Psychiatry 2013;2013:875873.  Back to cited text no. 16
[PUBMED]    
17.Dalton AJ, McVilly KR. Ethics guidelines for international, multicenter research involving people with intellectual disabilities. J Policy Pract Intellect Disabil 2004;1:57-70.  Back to cited text no. 17
    

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Correspondence Address:
Prof. B S Chavan
Department of Psychiatry, Government Medical College and Hospital, Regional Institute for the Mentally Handicap, Chandigarh - 160 035
India
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/0019-5545.130477

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