Intellectual Disability (ID) can be viewed from a number of perspectives—as an extreme variation of the Gaussian distribution of intelligence, a trait, a biomedical condition as a consequence of underlying brain disease, or as a disability arising out of complex interaction between cognitive impairments and the living environment. However, the best way to understand ID is from a bio-psychosocial perspective. ID belongs to a class of neurodevelopmental disorders, which have onset in childhood and lead to impaired development of one or more human capacities. The core concept of ID—namely onset in childhood, significant impairments in global cognitive or intellectual functions, and concurrent deficits in adaptive behaviours—has remained the same over the centuries, though the condition has carried different names in different epochs in history. The most recent approach likely to be adapted by ICD-11 and by DSM 5 is to classify ID under the ‘parent category’ of neurodevelopment disorders with a new name of “intellectual developmental disorders” (Salvador-Carulla et al. 2011).

The approach of society towards people with ID has varied across ages and societies. For instance, there was widespread institutionalisation of these people in industrialised societies in the nineteenth and the early twentieth century. It was only later that these societies realised that it was a costly and unfortunate error. Since then they have been advocating family and community-based care. Institutionalisation has never occurred in a big way in India, and families have always looked after these individuals with a sense of duty and compassion. The reasons are not far to seek—the closely-knit family and kinship systems in India have always kept their member in their fold, despite their disabilities and hardships that they have had to face in the process. However, the scenario is changing in the last 2 or 3 decades, because of the rapid social changes that we are undergoing, with major implications for the individuals with ID and their families. A lot of discussion, debate and development of approaches have been happening on how do we face these new challenges, and organise services for individuals and their families. There is no doubt that more widespread, more efficient, and more comprehensive services and support systems from a life-span perspective have to be developed to ensure adequate quality of life for individuals with ID and their families.

The beginnings of organised services in this area can be traced to establishment of special schools in many cities in the 1950s and the 1960s by Non Governmental Organizations (NGOs) and by the voluntary sector. A number of child guidance clinics (CGCs) and mental retardation clinics were also set up in hospitals, sometimes by departments of psychology or child development in university set-ups. These schools and CGCs became the hub of activity for providing services, imparting training, and also for spreading awareness. They also developed many innovations, for instance group parental counselling, parent training, and home-based interventions. Tools to assess intelligence and social development such as Binet-Kamat test and the Indian version of Vineland Social Maturity Scale were developed, which are still in use today. Professional enthusiasm reached such great proportions in the late 1960s and early 1970s that a new journal devoted to ID—the Indian Journal of Mental Retardation was started in 1968, though it was discontinued after a few years. There was a sustained interest in the epidemiology of ID in the 1970s, either as a part of general psychiatric surveys, or specifically on ID; these brought out the magnitude of the problem and ID was no longer a hidden reality (Srinath and Girimaji 1999). The number special schools have seen a phenomenal growth in the past decade and there are now more than 1,200 such schools all over India now.

In this chapter, some of the most significant developments in the last 3 decades are reviewed and a roadmap is offered for future. Many of these developments have been reviewed elsewhere (Girimaji and Srinath 2010) and readers could also refer to clinical practice guidelines for ID prepared for the Indian Psychiatric Society for further information (Girimaji 2008).

Studying the implications and consequences for families caring for an individual with ID has been recurring theme of research. These include parental attitudes, family stress, burden, coping, and family needs. (Seshadri 1983; Wig et al. 1985; Narayan et al. 1993; Dhar 2009). The popularity of behaviour modification and training parents in behaviour modification skills for home-based training received considerable attention in 1980s. Varma and Seshadri (1989) developed an outpatient model for children with mild ID that involved individualised family intervention with components of parent education and counselling, parent-child relationship, and imparting training skills to parents. One of the earliest efforts was by Mehta and Ochaney (1984) who reported that it was possible to train parents in behaviour modification skills. Group parental counselling approach in centres that saw a large number of children with ID was another novel development (Girimaji et al. 1990; Peshwawaria et al. 1991), with the aim of parent education, orientation, providing emotional support, and to encourage and equip them for home-based training. Several variations of this approach, such as parental workshops, caregiver training workshops, self-help group workshops, have developed over the years and are being practiced widely all over India. Brief centre-based family-focussed intervention is another innovation where children are admitted along with their families for a comprehensive intervention by a multi-disciplinary team. At the National Institute of Mental Health and Neurosciences (NIMHANS) such intervention has been going on almost 3 decades (Narayanan et al. 1988). An evaluation of efficacy of this model was carried out through a ICMR funded project with very encouraging results; social adaptive skills improved, behaviour problems decreased, family stress came down and family coping was better (Girimaji 1996), a new semi-structured instrument to evaluate stress and coping in these families was developed (Girimaji et al. 1999), and a manual for counsellors was prepared. Similarly, the Vellore model at the Nambikai Nilayam has been quite popular, where the family-focussed intervention is done along with other interventions by a multi-disciplinary team (Russel et al. 1999). Adaptation of similar interventions has happened all over India.

High-risk intervention, early detection and intervention is another area, which has seen some development over the years. One positive development has been the increasing interest of paediatricians in developmental disorders in general and early intervention in particular. There have been several reports of early intervention in India, with some of them indicating positive results (APAWMR 1992; Pandit et al. 1992; Thomas 1992; Kaur et al. 2006; de Souza et al. 2006; Nair et al. 2009).

The idea of parents coming together and forming associations for mutual support, service development, advocacy, and brining about positive changes in policies and legislation, and implementation of these caught up in 1980s, especially after a WHO-NIMHANS workshop in Bangalore in 1981. Several parent associations were formed in different parts of India, especially after receiving a strong push for the movement by the National Institute for the Mentally Handicapped, Secunderabad. There are now more than 180 such associations spread over 28 states, and they have come together to form an umbrella organization called Parivar—National Confederation of Parent Organisations (Parivar-NFPO). This positive development in the recent years has definitely contributed to empowerment of individuals and their families, and ensuring that their rights are not neglected.

Mental health problems are quite common in ID, whether in the form of comorbid psychiatric disorders or problem behaviours. Psychiatric disorders are at least 2 to 3 times more common people with ID, compared to general population (Einfeld et al. 2011). Presence of these comorbid problems in people with ID has major negative consequences for them and their families—for instance exclusion from educational settings, and increased family stress. These conditions are often under-diagnosed and under-treated because of a number of reasons, for example, misattribution of symptoms to ID itself—diagnostic overshadowing (Reiss 1982), or masking of symptoms because of presence of ID. There are a number of studies from India that have documented high rates of comorbid psychiatric disorders in this population (Chaturvedi and Malhotra 1983; Kishore et al. 2004; Shivakumar et al. 2008). It is a primary task of the psychiatrist to recognise, evaluate and carry out multi-modal management of these mental health issues.