Doctoral Dissertation Research: The Autonomy of Adults with Developmental Disabilities

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Recent reforms in services for people with Intellectual and Developmental Disabilities (ID/DD) have been oriented toward increasing the individual's opportunity for autonomy and a normal life in the community. However, adults with ID/DD show poor outcomes on almost all indicators of successful adulthood. This project examines the influence of the tension between the need for care and encouragement of autonomy on the adult lives of people with ID/DD. More specifically, this study investigates disabled adulthood as a collection of care arrangements--created by significant others, programs, and government support--that shapes the opportunities for autonomy. This research has three goals: to assess the design of a novel independent living program for high functioning adults with ID/DD, to contribute to the literature on the ethics of care, and to situate the regulations governing state and federal funding for disability in the context of the daily life of adults with ID/DD. Findings from this study have the potential for broader impacts through influence on government policy concerning care and directly on caregiving for adults with ID/DD.This project will use ethnographic research, interviews, and qualitative analysis of government regulations and assessment tools to investigate disabled adulthood as a set of arrangements balancing care and autonomy. On the micro level, this study will describe the process of negotiating the relationship between care and autonomy for adults, family members, and staff at an independent living program. On the program level, this study will assess the program design and operation of a novel type of independent living program, one that provides as-needed care to individuals with ID/DD who live in their own apartments. On the institutional level, this study will investigate the influence of government regulations for entitlement programs like Medicaid, SSI/SSDI, and food stamps on the adult lives of people with ID/DD, including their ability to make autonomous decisions and to engage in adult behaviors like employment, marriage, and the activities of daily life.This award reflects NSF's statutory mission and has been deemed worthy of support through evaluation using the Foundation's intellectual merit and broader impacts review criteria.