Intellectual Disability In India Research Articles

ADD-H-Comprehensive Teacher's Rating Scale (ACTeRS): a measure for attention deficit hyperactivity disorder among children with intellectual disability in India.

There is no validated measure for assessing Attention Deficit Hyperactivity Disorder (ADHD) in India, and therefore, the authors validated the ADD-H Comprehensive Teacher's Rating Scale (ACTeRS). Teachers/parents/clinicians of 110 children with ADHD completed the ACTeRS. The diagnosis of ADHD was confirmed by an independent multi-disciplinary team using ICD-10 diagnosis for diagnostic accuracy and criterion validity. The convergent and divergent validity were assessed by another rater. The data was analyzed for diagnostic accuracy, reliability and validity appropriately. An ACTeRS score of ≥61 [Sensitivity (Sn) =85.51%; Specificity (Sp) = 90.24%; Area under the curve (AUC) = 0.94] is appropriate for the diagnosis of ADHD. The test-re-test reliability [Intra-class correlation coefficient (ICC) = 0.87], internal consistency (Cronbach's α = 0.80; range of 0.89-0.93), section-total correlation, face and content validity for the ACTeRS were good. Convergent validity of attention deficit, hyperactivity and oppositional subscales of ACTeRS with the corresponding subscales of Swanson, Nolan & Pelham Rating Scale-Revised (SNAP-IV) was moderate (r = 0.60, P = 0.005; r = 0.49, P = 0.02; r = 0.58, P = 0.008 respectively), and negative correlation with the Childhood Autism Rating Scale (r = -0.36; P =0.1) for divergent validity was found. The criterion validity analysis showed a high concordance rate of 82.52% between ACTeRS and International Classification of Diseases, Edition10 (ICD-10) diagnosis of ADHD. A 4-factor structure was replicated. The ACTeRS has adequate psychometric properties for use in the Indian population for identifying ADHD.

Intellectual disability in India: Charity to right based.

Byline: B. Chavan, Abhijit. Rozatkar According to the Census 2001, [sup][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; [sup][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. [sup][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 [sup]th century, has now been replaced with ID in most English speaking countries. Diagnostic and Statistical Manual 5 [sup]th Revision (DSM-V) has replaced it with ID and the much anticipated 11 [sup]th revision of International Classification of Disease is likely to do so. [sup][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". [sup][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. [sup][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. …

Mapping Future Research in Disabilities—Research Initiatives in Intellectual Disabilities in India: Report of a National Interdisciplinary Meeting

AbstractA meeting organized under the auspices of the International Association for the Scientific Study of Intellectual Disabilities (IASSID) Academy on Education, Teaching and Research was held in March 2011 at the India International Centre in New Delhi, India, with the explicit purpose of helping establish a road map for future research in intellectual disabilities (ID) in India and to forge alliances among like‐minded researchers and practitioners to move forward on countrywide research. The participants were drawn from nongovernmental and governmental groups, private consultancies, psychology, researchers, and policymakers, and they were interested in research dissemination, research methodologies, and research ethics. The participants developed a framework for research strategies and defined important areas for further research in ID for India. Based on the discussions, the following research strategy areas were identified: prevalence studies, human ethics, human rights, prevention, interventions, research syntheses of existing research that has been conducted in India, dissemination of existing research, building research capacity, and disaster preparedness. As each priority area required further discussion and feedback, agreement was achieved that such further discussions and collaborations would follow. The follow‐up is a process which involves the simultaneous and synergistic development of policies and practices at the application and governmental levels.

Intellectual disability in India: the evolving patterns of care

Intellectual disability was recognised in ancient Indian literature, but organised services have a history of just five decades. India shares many features of low- and middle-income (LAMI) countries regarding intellectual disability. There is a low level of awareness about its nature, causes and interventions. One can come across many superstitions, myths and misconceptions about intellectual disability. In general, services are inadequate, being concentrated in big cities and urban areas. There is generally limited access to support services and few government benefits, and these, in any case, are often of little value (World Health Organization, 2007). Locally and nationally, there are few relevant and reliable epidemiological data on the prevalence of intellectual disability. However, there have been some positive developments within the past three decades, and they are the focus of this paper.

Empowering people with intellectual disability

Services for people with intellectual disabilities are not necessarily a high priority even in the high-income countries. We look in this issue at the way in which approaches to support are provided in three contrasting regions, with different cultures and histories. We begin with an account of intellectual disability in India, where Dr Satish Chandra Girimaji discusses past and present frameworks for care and education. It is a cultural norm within the subcontinent that families are expected to look after relatives with disabilities, both in childhood and in adulthood; it seems that this long-standing tradition continues. On the other hand, rapid industrialisation and urbanisation mean that it is ever more difficult for families to cope with disability, because of other pressures, without externally provided support services. The tension between tradition and economic development is palpable.

Aetiology of intellectual disability in paediatric outpatients in Northern India

To study the aetiology of intellectual disability in patients presenting to hospital and the diagnostic yield of a standardized examination. Over a 1-year period, the first three children presenting to the paediatric outpatients department (OPD) on 2 selected weekdays with developmental delay, suspected intellectual disability, or school failure were enrolled for study if they satisfied standard definitions of global developmental delay (GDD), or intellectual disability as tested by scales for Indian children: Developmental Assessment for Indian Infants, Binet Karnat Test, and the Vineland Social Maturity Scale (Malin's Adaptation). Detailed history, and physical and neurological examinations were recorded. An algorithmic approach to investigations was followed. Also, neuroimaging, thyroid function, electroencephalograph, karyotyping, and studies for fragile-X syndrome were conducted. Aetiological diagnosis was considered established only if clinical features were supported by investigations. Clinical features associated with a successful aetiological diagnosis were computed. A total of 122 children were enrolled in a cross-sectional analytic study (mean age 43.5 mo [SD 40.66]; 84 males, 38 females). Of these, a definite aetiology could be assigned in 66 children (54.1%); 17 prenatal, 38 perinatal/neonatal, and 11 postneonatal. Factors associated with reaching a definite diagnosis included younger age at presentation, presence of seizures, microcephaly, adverse neonatal events, and abnormal motor signs. Clinical history and examination gave important clues to the aetiology in 89 (72.9%) patients. Neuroimaging was abnormal in 91 out of 114 children, with aetiological findings in 48 children. Perinatal/neonatal causes predominate as the cause of GDD or intellectual disability in India. The study highlights that a large majority of cases seen here were preventable.

Perspectives of intellectual disability in India: epidemiology, policy, services for children and adults

To provide a panoramic view of the recent developments and current situation in epidemiology, legislation, policies, services, and research in intellectual disability in India. A wide variation in point prevalence of intellectual disability has been reported, from around 1/1000 to 32/1000, depending on the case definition, methodology, and population selected. There are a number of acts, policies, and programs addressing intellectual disability, but their implementation needs to improve. Services in terms of prevention, early intervention, health services, parent-focused and family-focused interventions, special and inclusion education, vocational training, support for individuals and their families, and community-based rehabilitation services are steadily improving, albeit unevenly across different regions and sub-populations. Genetics of disorders associated with intellectual disability such as primary microcephaly and fragile X syndrome have received research attention. Psychosocial research has focused on family needs, family-focused intervention, early intervention, and comorbid disorders. A positive development has been the organization of parents into parent associations all over India and formation of a national confederation. There has been noticeable progress in addressing the challenges posed by intellectual disability in India on all fronts. However, there is still a long way to go in terms of developing a locally and nationally relevant and reliable database, effective implementation of legislation and policies, and development of effective, accessible, and affordable interventions.

Education of persons with intellectual disabilities in India

Historically in India, persons with disabilities enjoyed co-existence, though at different times, the treatment and attitudes were at variance. Out of all the types of disabilities, an intellectual disability poses greater challenges than the other types. The families of persons with intellectual disabilities do also have needs different from others, which cannot be segregated from the needs of children with intellectual disability. Specific legislations have been put in place to ensure empowerment of persons with disabilities. Through Rehabilitation Council of India, human resource development programs are standardized. The National Institute for the Mentally Handicapped has developed many service models and contributed toward human resource development and research. Many Non-Government Organizations have started special education and vocational training programs. National Trust, a statutory body, supports the individuals and families and seeks to protect those individuals having no parents. Sarva Shiksha Abhiyan (Education for All), has special focus on education of children with disabilities. Vocational training centres have an obligation to develop eco-centric and commercially viable jobs. As per the National Policy, the Government of India envisages that every child with a disability should have access to appropriate preschool, primary and secondary level education by 2020.

Effective Teamwork in Special Schools for Children with Intellectual Disabilities in India

Abstract Special educational services for children with intellectual disabilities in India are mostly provided by nongovernmental organizations. Described is a study designed to assess the impact of professional “teamwork” in special schools run by such nongovernmental organizations in India. The sample consisted of 112 rehabilitation professionals who attended a short‐term training program at the National Institute for the Mentally Handicapped, and who were randomly selected from a range of nongovernmental organizations running such schools representing various parts of the country. Comparison of the teamwork scores in relation to the functional area of work using a F‐test for unequal “n” revealed greater teamwork present among regular (line function) professionals (such as the educators and therapists) than among support staff (such as administrators), supporting the hypothesis that the application of professional teamwork is a useful device in special school settings. The results were interpreted against the background of organizational effectiveness in the context of special education services and it was suggested that additional research needs to be directed at the dynamics of the teamwork process and to better understanding why support staff reflect low involvement in teamwork in India.

Psychiatric diagnosis in persons with intellectual disability in India.

This study examines the rate of psychiatric diagnosis as per ICD-10 and Reiss Screen for Maladaptive Behaviours (RSMB), and distribution of psychiatric diagnosis with regard to the severity of intellectual disability (ID). It also explores the degree of agreement between Reiss screen and clinical diagnosis (ICD-10) in relation to dual diagnosis. In this study Intelligence (IQ) and Social Quotient (SQ) were estimated on Indian adaptation of Binet's scale and Vineland Social Maturity Scales, respectively, in 60 consecutive persons with ID. Both ICD-10 and RSMB were used independently to determine the presence of psychiatric diagnosis. Clinically, according to ICD-10, about 60% of the sample was found to have dual diagnosis as compared to 48% on RSMB. Agreement between ICD-10 and RSMB about psychiatric comorbidity was 82%. Commonest psychiatric diagnosis was unspecified psychosis followed by bipolar affective disorders. Persons with ID do suffer from various psychiatric disorders. RSMB is a useful tool for differentiating between psychiatric problems and maladaptive behaviours. Hence RSMB can be used in the Indian context.