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Oklahoma State University

Deinstitutionalization: Transition To Community Living

In 2012, the Oklahoma Department of Human Services (OK-DHS) passed a resolution to close the two remaining state-funded institutions that were providing care to approximately 240 individuals with intellectual and developmental disabilities. The closing of these institutions, Northern Oklahoma Resource Center in Enid (NORCE) and Southern Oklahoma Resource Center (SORC) in Pauls Valley, occurred over a period of three years. As individuals with intellectual and developmental disabilities transitioned to living in the community, their family members became overseers of their care for the first time in at least two decades.

This transition from institutional care to community living marked a significant change in the way Oklahomans with intellectual and developmental disabilities and their families access services and supports. The Deinstitutionalization Project, led by Drs. Jennifer Jones and Kami Gallus, aimed to better understand families’ experiences during the mandated transition of their relative with IDD from institutional care to community living in Oklahoma and consisted of two phases. For Phase I, family members completed surveys regarding empowerment, resilience, and satisfaction with service providers. Phase II consisted of in-person interviews designed to explore family members’ perspectives of transitions across the lifespan, including their family relatives’ admission and mandated discharge from state-run institutions.

Implications from the current study can be applied beyond deinstitutionalization to include other forms of community desegregation (e.g., self-contained classrooms to inclusive classrooms, sheltered workshops to integrated employment, group homes to person-owned homes) and natural transitions (e.g., early intervention to special education services, high school to young adulthood) experienced by individuals with IDD and their families across the lifespan. Our hope is that sharing family members’ voices of their lived experience is the first step in developing transferable models of support for all families in transition.

Deinstitutionalization Publications

Jones, J. L., & Gallus, K. L. (2016). Understanding families’ perspectives of deinstitutionalization: What families value and desire in the transition to community living. Research and Practice for Persons with Severe Disabilities, 41(2), 116–131.

Deinstitutionalization Presentations

Caldwell, J. A., Jones, J. L., & Gallus, K. L., (2017, June). Predictors of resilience in families of adults with intellectual and developmental disabilities following deinstitutionalization. Poster presentation at the annual meeting of the American Association on Intellectual and Developmental Disabilities (AAIDD): Hartford, CT.
Awarded the AAIDD Student and Early Career Professionals Division Scholarship.

Johnson, S. J., Jones, J. L., & Gallus, K. L. (2017, June). Meaning making among families of individuals with intellectual and developmental disabilities: Coping with transitions across the lifespan. Poster presentation at the annual meeting of the American Association on Intellectual and Developmental Disabilities (AAIDD): Hartford, CT.

Jones, J. L. (Guest), Gallus, K. L. (Guest), Taylor, D. (Producer). (2016, May 12). What matters to family members when a relative transitions to community living. TASH Amplified Podcast Series. Podcast retrieved from http://tash.org/blog/2016/05/13/matters-family-members-relative-transitions-community-living/