Understanding the disabled self and the effects of reform: How do aging adults with disabilities conceptualize their disability and measure the effects of programs and policies on that conceptualization?

Individuals with disabilities are living longer and healthier lives than ever before. These same adults have been advocating for more choice and control in their services and supports to allow for greater independence and inclusion. In response, several policies have been implemented attempting to support greater equality and reform the institutional bias of LTSS in America towards a more person-driven, self-directed, home and community-based model of LTSS delivery. While a great deal of literature is dedicated to older adults who develop a disability, aging with a disability, and reforms in civil rights and LTSS policy, very little is known about the individual's conceptualizing of disability for aging adults with a lifelong disability. In addition, very little is known about the perceived effects major policy reforms have had and continue to have on an individual's own concept of disability. This doctoral study will examine aging with a disability from the individual's perspective along with their assessment of whether these policies intended to provide greater equality and more choice and control have affected their conceptualization of disability. In order to collect information related to the self-conceptualization of disability, this study proposes using a qualitative approach to collect data. The study will consist of three in-depth interviews with 10-15 older adults (age 60 and above) with a lifelong disability. The three interviews will examine each individual's history, self-conceptualization of disability, aging, functional limitations, needs related to aging with a disability, as well as the role major policies have played/do play in conceptualizing disability.