Jayanthi Narayan

Education is the fundamental Right of every citizen of India. To exercise that right is a challenge when the person has a disability. The education of individuals with disabilities has come a long way in India, ranging from total rejection by schools, to right based education. Getting to know the educational system in India since BCE to current practices leads to understanding the socio‐cultural ethos that impact the principles of ‘education for all’ in India. This narrative study with specific focus on current trends, practices and challenges was carried out through a review of government publications and documents, research studies and other relevant literature. The impact of international mandates and national policies on the educational systems are highlighted. In addition, the diverse socio‐cultural, linguistic economic and geographical factors that influence the educational system and the efforts taken by the various Boards of Education at Central and State levels are discussed. Findings reveal that in essence, the policy of inclusive education espoused by the ministry of education reaches a large number of children in regular schools throughout the country, while the special schools supported by the Ministry of Social Justice and Empowerment and NGOs play their role in meeting the specific needs of the child ranging from early intervention to higher education/vocational training and job placement. Decisions about the educational placement of a child with a disability are predominantly based on parental choices, the access to schools in their locality and the extent of the child's disability.

Legislations for persons with disabilities emerged in the 1990s in India, providing them with rights and entitlements. Aligned with the UNCRPD, the Rights of Persons with Disabilities Act (2016) supports improved programmes and services. There are no exclusive policies for those with intellectual and developmental disabilities. Different government departments and non‐government organisations provide services including centrally sponsored programmes to persons with disabilities and enable them to exercise their rights. For example, rehabilitation and provision of aids and appliances lie with the Ministry of Social Justice and Empowerment, right to education is with the Ministry of Education, and, early intervention and health services and related supports are with the Ministry of Health. In India, non‐government organisations also play a vital role in health care services. In this paper, we discuss the existing health care systems including medical services in India for persons with disabilities with a specific focus on persons with intellectual and developmental disabilities. The discussion include how the system was evolved and what is in place today, the coverage, strengths, and limitations in the system. We have tried to provide a comprehensive description of existing policies, and practices of health care as well as the cultural influences with regard to health care for people with intellectual and developmental disabilities in India.

India is a diverse country in which the development of services for children with disabilities presents many challenges. There is evidence that progress towards the provision of educational and therapeutic services has been considerable in the metropolitan cities, with reports of many examples of good and innovative practice. Rural communities are often less well served, and families living in some areas continue to face challenges when attempting to gain support for their children with disabilities. This chapter interrogates the situation for families in districts in southern and central India. The authors draw upon recent research to consider how the challenges of providing a multi-disciplinary support mechanism can be delivered to those living in these areas. Issues related to co-ordination of services, recruitment and retention of professionals and allocation of resources are considered through an examination of the socio-economic conditions confronted by families and professionals. Case study evidence from projects aimed at providing effective services are presented and discussed.

An online survey on experiences of 47 caregivers of persons with intellectual disability during COVID 19 pandemic was carried out to find out their experiences, with the aim to understand the focus areas of challenges, so as to organise need-based support systems. A validated questionnaire was used to collect data. The participants belonged to different states of India with varied socio-economic backgrounds. The results revealed that most of them experienced challenges in supporting persons with intellectual disability. Many found online classes beneficial, while some caregivers had difficulty in keeping the person occupied or managing challenging behaviour. Some caregivers were happy to get more time to spend with the person with intellectual disability at home. The outcome of this study suggests that irrespective of the background, the families faced challenges, the needs were varied and therefore specific efforts are to be taken to support the families so that they are prepared.

Education of children with diverse learning needs, particularly those with disabilities, has seen a significant change since the enactment of Right to Education Act - in India. Enrolment of children with disabilities in schools has markedly increased over the past decade. The report of the National Advisory Committee headed by Professor Yash Pal did not touch upon education of children with disabilities specifically. However, many of the points made in the report are relevant to the current day education of children with disabilities. The committee’s recommendations regarding observation, learning by doing, focus on life experiences, knowledge and its application, criterion-based evaluation instead of competition support the education of children with disabilities. This chapter reviews these recommendations alongside teacher preparation to achieve the objectives of inclusive education. It seeks to address the following questions: has the educational system moved away from just providing information to facilitating critical thinking? How do children with disabilities learn? Are they learning without burden?

Background: A growing body of evidence attests to the disproportionate impact of COVID-19 on persons with intellectual and developmental disabilities (IDD) during the pandemic. This study asked caregivers about their perceptions of how COVID-19 impacted them and the people they support. Method: An online survey was conducted in 12 countries during August-September 2020 and sought information on demographics, support practices, information and training, experiences of COVID-19, social distancing, and wellbeing, as measured by the DASS12. This study reports on 3,754 family members, direct support professionals, and managers who participated in the survey. Results: Caregivers observed increases in depression/anxiety, stereotyped behaviours, aggression towards others and weight gain in the person(s) they supported. They also reported difficulties supporting the person(s) to access healthcare. Families reported reducing or ceasing employment and absorbed additional costs when supporting their family member. Direct support professionals experienced changes in staff shifts, staff absences, increased workload and hiring of casual staff. Caregivers’ wellbeing revealed high levels of stress, depression, and less so anxiety. The strongest predictor of wellbeing among families was observation of changes in mood in the person(s) they supported, while for direct support professionals, the strongest predictors of wellbeing were reorganisation of staff shifts and increases in new direct support staff. Discussion: Findings support the contention of this population experiencing a disproportionate burden during the COVID-19 pandemic, reflecting historical inequities in access to healthcare and other human rights violations which are now protected under the United Nations Convention on the Rights of Persons with Disabilities.

In response to international agreements, recent Indian legislation has raised expectations that all children, regardless of need or ability, should gain access to formal education that is inclusive and addresses their social and learning needs. Initiatives designed to support the implementation of this legislation have been undertaken in several parts of India. Reports related to such initiatives have largely focused upon developments in large urban connotations, with studies in rural areas being less in evidence. This paper reports a small-scale study conducted in Telangana a state in the south-central part of India. Through the application of semi-structured interviews data were obtained to enable a comparison to be made of the experiences of two purposive samples of families of children with disabilities and special educational needs, and the professionals who support them. The first sample was located in Hyderabad, a large metropolitan city, the capital of Telangana State. The second was situated in villages in Sangareddy, a single rural district of the same state. Interviews were conducted either in English or in Telugu, the state language with all interviews transcribed and subjected to thematic analysis. The findings, which will be used to support further development in the area, reveal a willingness on the part of professionals to support the education and social welfare needs of children with special educational needs and their families and an awareness of current national legislation aimed at achieving this objective. A disparity exists between the availability of professional support services available to families and children, with those living in the rural district experiencing greater difficulty in accessing appropriate support than their counterparts in the metropolitan city. The lack of opportunities for training and professional development is perceived to be a major obstacle to the progress of inclusive education as required by national legislation in both locations. Recommendations are made for further research that is closely allied to changes in practice, for the development of professional development of teachers and other professionals, and for the development of centralised provision in rural areas to address the needs of families.

Background : This protocol outlines research to explore family members’ and paid staff’s perceptions of the impact of COVID-19 on individuals with intellectual and developmental disabilities and their caregivers. Evidence suggests that people with intellectual and developmental disabilities experience disparities in healthcare access and utilisation. This disparity was evident early in the pandemic when discussions arose regarding the potential exclusion of this population to critical care. Methods : An anonymous online survey will be conducted with caregivers, both family members and paid staff, to explore their perceptions of the impact of COVID-19 in terms of demographics, living arrangements, access to services, social distancing, and carer wellbeing. The survey will be developed by the research team, many of whom are experts in intellectual disability within their own jurisdictions. Using back-translation our team will translate the survey for distribution in 18 countries worldwide for international comparison. The survey team have extensive personal and professional networks and will promote the survey widely on social media with the support of local disability and advocacy agencies. Statistical descriptive and comparative analyses will be conducted. Ethical approval has been obtained for this study from University College Dublin’s Human Research Ethics Committee (HS-20-28-Linehan). Dissemination : Study findings will be prepared in a number of formats in order to meet the needs of different audiences. Outputs will include academic papers, lessons learned paper, practice guidelines, reports, infographics and video content. These outputs will be directed to families, frontline and management delivering disability services, national-level policy makers, healthcare quality and delivery authorities, national pandemic organisations and international bodies.

Background : This protocol outlines research to explore the impact of coronavirus disease 2019 (COVID-19) on individuals who have intellectual and developmental disabilities and their caregivers. Evidence suggests that people with intellectual and developmental disabilities experience disparities in healthcare access and utilisation. This disparity was evident early in the pandemic when discussions arose regarding the potential exclusion of this population to critical care. Methods : An anonymous online survey will be conducted with caregivers, both family members and paid staff, to explore the impact of COVID-19 on this population in terms of demographics, living arrangements, access to services, the impact of social distancing, and also carer wellbeing. The survey will be developed by the research team, many of whom are experts in intellectual disability within their own jurisdictions. Using back-translation our team will translate the survey for distribution in 16 countries worldwide for international comparison. The survey team have extensive personal and professional networks in intellectual disability and will promote the survey widely on social media with the support of local disability and advocacy agencies. Statistical descriptive and comparative analyses will be conducted. Ethical approval has been obtained for this study from University College Dublin’s Human Research Ethics Committee (HS-20-28-Linehan). Dissemination : Study findings will be prepared in a number of formats in order to meet the needs of different audiences. Outputs will include academic papers, lessons learned paper, practice guidelines, reports, infographics and video content. These outputs will be directed to families, frontline and management delivering disability services, national-level policy makers, healthcare quality and delivery authorities, national pandemic organisations and international bodies.