Dissertation defense: Aavas (आवास): Future Planning and Housing for Adults with Intellectual and Developmental Disabilities in India

PhD in Disability Studies dissertation defense: Aavas (आवास): Future Planning and Housing for Adults with Intellectual and Developmental Disabilities in India by Piyush Mishra

Abstract: As individuals with intellectual and developmental disabilities (IDD) transition into adulthood, planning for their future becomes essential. Future planning involves ensuring that sufficient housing, vocational, financial, legal, recreational, and daily lifestyle supports are in place for adults with IDD after their primary caregivers (often the parents) are no longer able to provide care. Future planning is an emotional, iterative, and complex process that families may find overwhelming. This challenge is further intensified in India by a lack of resources, support, and services, as well as inadequate awareness and implementation of state legislation and programs designed to support the future. The housing domain of future planning addresses ‘where and how’ the adult would live after their primary caregivers. India needs data on housing resources—characteristics such as the environment, facilities, and services, along with their administration, funding, and management. We must also understand how families think about future planning, the challenges they face, and the support they need. Therefore, the aim of this study was to explore the housing resources and the perceptions of parents regarding ‘future planning and housing’ among the families in Maharashtra (a state in western India). It consisted of two complementary phases. In phase 1, an environmental scan identified 70 out-of-home housing resources through a systematic search of government documents and websites. This was followed by visits to 10 housing resources across Maharashtra's six divisions to conduct structured interviews with housing leaders (e.g., founders, managers). Three housing models emerged, reflecting varying degrees of community connectedness: (1) Dispersed, community-embedded independent homes and apartments; (2) Clustered, self-contained campuses away from the community; and (3) Indigenous, family-style homes and bungalows rooted in local surroundings in rural/semi-urban regions, contributing to the community. A descriptive content analysis guided by a modified Bronfenbrenner's Socio Ecological Model uncovered themes regarding housing leaders' experiences across levels: individual (e.g., establishing housing resources), relational (e.g., care staff and individuals with IDD), community (e.g., neighborhood resources), and policy (e.g., bureaucratic hurdles, government funding). In phase 2, three focus groups with 15 parents were conducted in Nagpur and Mumbai to explore families' understanding, needs, and perceived preparedness for future planning and housing. Thematic analysis identified five themes: (1) Conceptualization of Future Planning; (2) Parents taking steps toward the future; (3) Developing community living skills with adults with IDD; (4) Experiences and expectations regarding housing resources; and (5) Need for broader systemic supports. This dissertation reveals the unique ways in which housing resources in India are created and managed amid various constraints. It also highlights parents' experiences navigating the future planning process, the centrality of securing housing resources, and the challenges that accompany this process.

Zoom Info

https://uic.zoom.us/j/86304640217?pwd=ZOpy6YRywPXK351ChBaIztdhjSCNGn.1

Meeting ID: 863 0464 0217
Passcode: Aavas123