Consumer choice in developmental disability services: assessing the impact on quality of life indicators
Neely-Barnes, Susan L
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Intervention approaches with people with developmental disabilities have moved from a care model which emphasized medical treatment and rehabilitation to a support model that emphasizes consumer self-direction and choice (Mary, 1998). Despite this shift in intervention approach, there has been a lack of theoretically-guided quantitative research on the impact of consumer choice. This dissertation study presents three papers which seek to add both to the conceptual literature and the empirical literature about the impact of choice on quality of life outcomes for consumers. It employs data from Washington State's involvement in the 2002 National Core Indicators Project Consumer Survey. A final chapter addresses the practice and policy implications for local agencies.The first paper presents a conceptual model to explain the mechanism through which choice predicts outcomes for consumers. The proposed conceptual model draws from an integrative review of the independent living perspective, empowerment theory, and social role valorization to explain how choice leads to quality of life outcomes.The second paper is a study of heterogeneity in the developmental disability population and the access of sub-groups within the population to community-based, consumer-controlled intervention. This study employs latent profile analysis, a mixture modeling technique, to model sub-groups in the population. Two sub-groups are identified: the first fitting a severe intellectual disability profile (n = 101) and the second group fitting mild intellectual disability profile (n = 220). Differences between the two groups were examined. Results of this study indicate that individuals with mild intellectual disabilities experience greater participation in services that are community-based and consumer-controlled than those with severe intellectual disabilities.The third paper presents a study of the relationship between choice, living arrangement, and quality of life indicators. Employing data from the 220 participants who fit the mild intellectual disability profile, structural equation modeling was used to assess the influence of type of living arrangement and choice on quality of life. Results of the study indicate that consumers who lived in the community and made more choices had higher scores on the quality of life indicators.