Topics: institutional care, community inclusion, home and community-based services, family relations, staffing concerns

Goal

Observe the process of closing the Hamburg State Center, specifically the experiences and expectations of the residents, families, and staff impacted by the closure.

Key Findings

1. Residents and their families underwent a major culture shift into supporting community living once they were made aware of the availability of supports in the community.
2. The process of deinstitutionalizing set in motion transformations in family relations, providing for renewed relationships among residents, their parents, and siblings, as well as the formation of new relationships among roommates and their family members.
3. During deinstitutionalizing, individuals frequently moved between assumed identities, such as transition team members calling upon their professional beginnings as institution staff and current staff members describing themselves as the fictive family of the residents in their care.

Findings were published in a report for the Office of Developmental Programs and disseminated in a presentation (see presentation) at the 2019 AUCD Conference and poster at the 2019 AAIDD Conference.

“Since moving into the community, Lee’s staff or Aunt Joanie were able to pick up Lee’s mom, who lived in a neighboring town, and bring her to Lee’s home. They were able to visit every week or every other week.”

Partners

Supported by the Office of Developmental Programs (ODP) and in collaboration with the Hamburg State Center. 

History

Since 1967, the number of institutions and people living in them have steadily declined. From 1960 until its closure in 2018, the Hamburg Center was officially licensed as an intermediate care facility (ICF), serving thousands of individuals with intellectual disabilities and their families. Though research has assessed changes in individuals’ quality of life years following the transition from an institution into the community, this study captured the lived experiences of residents, families, staff, and the closure team during the 18-month process of deinstitutionalizing.

“State centers to some degree come down to that second refrigerator paradox ... As long as they exist, there's going to be people that end up heading toward a state center because the option is there. I think that once the option is no longer there, there's plenty of resources in the community to support all these people.” (State transition team staff)

Data and Analysis

Ethnographic methods included hours of participant observation of transition team and staff meetings, town halls, and everyday operations; 37 semi-structured interviews with residents, family members, staff, service providers, and state administrators; and collection of over 200 archival, policy and media documents. The study used interpretive policy analysis to capture the shifting social relations, power dynamics, and cultural beliefs during the closure.