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

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, 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.