StrengthsBased Needs Assessment of Caregivers of Adults with Intellectual Disabilities in India

Although India has ratified the United Nations Convention on Rights of People with Disabilities (UNCRPD) in 2007 and has many disability-related policies, legislations and services in place, awareness or knowledge about rights is generally limited among family caregivers of people with intellectual and/or developmental disabilities (IDD). Furthermore, there has not been enough research in India to develop formal and informal interventions that aim to increase family caregiver awareness and knowledge on resources, supports and services, and/or improve access and use of supports and services. My exploratory study is driven by a human rights approach and the UNCRPD framework. Utilizing a concurrent mixed methods design, 100 strengths-based needs assessment surveys and 15 qualitative interviews were conducted with a convenience sample of 100 English-speaking and Telugu-speaking family caregivers of adults with IDD in Hyderabad, India. The purpose of my study was to gain an understanding of the needs and assets of the participants, so that “culturally adapted” strategies and interventions can be developed and formulated to better support family caregivers. The results showed that caregivers needed more information on disability-related human rights, and on available supports and services, particularly those with no proficiency in English. A need for more future planning services and information on how to access them emerged as a very important unmet need. The caregivers strongly recommended that the government should provide support to meet their information needs, support needs and service needs. The study also underscored the importance of supports that the caregivers could garner outside of the government and other formal systems, such as caregiver associations and peer support groups, to help them care for themselves and their care recipients better. Recommendations for caregivers and implications for researchers, practitioners and policymakers were finally discussed.