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

Abstract

Purpose of review: To provide a panoramic view of the recent developments and current situation in epidemiology, legislation, policies, services, and research in intellectual disability in India.

Recent findings: 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.

Summary: 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.