Despite initial opposition, a new study from Oklahoma State University finds once again that many families of people with disabilities that were required to transition from institutions to community living are ultimately pleased with the outcome.

Very similar to the Jacksonville Developmental Center Closure Study.

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Understanding Deinstitutionalization
What Families Value and Desire in the Transition to Community Living

Jennifer L. Jones1⇑
Kami L. Gallus1
1Oklahoma State University, Stillwater, USA

Jennifer L. Jones, Department of Human Development and Family Science, Oklahoma State University, 233 Human Sciences, Stillwater, OK 74078-6122, USA. Email:

The deinstitutionalization movement that began 50 years ago remains a current issue for professionals and families. Using qualitative phenomenology methodology, we investigated the experience of mandated deinstitutionalization for parents and siblings whose relatives with intellectual and developmental disabilities (IDD) transitioned from institutionalization to community living within the past 1 to 3 years. Findings from the current study align with previous research wherein, over time, most families shift from opposition to satisfaction regarding community living; however, family members’ narratives in the current study reveal there is more to the process of deinstitutionalization than the outcome of satisfaction. Family members, regardless of current opposition or satisfaction, shared six common themes concerning what they desired and valued throughout the deinstitutionalization process: (a) respect our relative’s history, (b) collaborate: make us feel like we are a part of the process, (c) provide quality care, (d) provide consistent care, (e) include my relative in the community, and (f) remember we are family. As the desirable goals of full community inclusion (e.g., education, community living, and competitive employment) are implemented through policy and practice, professionals must continue to develop intentional collaborations with, and supports for, families during times of transition in conjunction with services and supports developed for individuals with IDD.



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Tony Paulauski
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The Arc of Illinois
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