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Legislation concerning California residents with intellectual and developmental disabilities (ID/DD) requires recipients of services to be treated as independent individuals while emphasizing self-determination. At the same time, under regulatory procedures, recipients are considered dependent on the delivered services and not self-determinant. Neither the California Department of Developmental Services nor the trade associations representing community service providers have established a unified, systematic practice to support self-determination. This phenomenological study explored the experience of adults with ID/DD working toward self-determination.
Specifically, it explored how medical and social models contribute to shaping and actualizing the independence of this population. Interviews with eight adults with ID/DD explored the perceived barriers to, and opportunities for, achieving independence through self-determination. Under the current statutory regulations, the study viewed two conceptual lenses. The first lens, social role valorization, is based on the study of normalization. The second lens, social reaction, emphasizes a response to the disparities that acknowledge the political, cultural, and social beliefs associated with theories of deviance and social role valorization. The findings demonstrated that self-determination requires collaboration between coordinated services, primary social systems, and theoretical services supporting social role value. The discovery of these key elements may help California's disability service system fulfill legislative requirements to increase opportunities for personal choice.
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