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As state institutions close, families of longtime residents face agonizing choices

Tony Leys, Kaiser Health News on

Published in News & Features

Like Glenwood, most state institutions opened more than a century ago, and they typically were constructed in rural areas. “There was a movement to create a bucolic environment for individuals,” said Mary Sowers, executive director of the National Association of State Directors of Developmental Disabilities Services.

Many of the big institutions included farms, where residents helped grow their food. Conventional wisdom held that country life would be healthful. Now, Sowers said, “we recognize that the larger settings really didn’t wind up living up to that promise, and individuals are able to thrive more when they’re able to live in communities.”

Sowers said about 1.3 million Americans are served by public programs for people with intellectual or developmental disabilities. Only about 1% of them live in large state institutions.

Larson said families of the institutions’ remaining residents may feel whipsawed by experts’ advice. Years ago, medical professionals told parents that their children could best be served in such places. Now, those same families are urged to move their loved ones out. “They did what they thought was the right thing to do — and now to be told it wasn’t the right thing to do is really, really hard for them to accept,” she said.

The transition away from institutions for people with intellectual or developmental disabilities has been handled better than the wave of state mental hospital closures over the past 50 years, Larson said. Critics contend that as large state mental hospitals were shuttered, they weren’t replaced with sufficient community services. That sparked a surge in people with untreated mental illnesses living on the streets or in jails and prisons.

Facilities like the Glenwood Resource Center serve people with intellectual disabilities, such as severe autism and brain injuries. Larson said that community services for people with intellectual disabilities have increased and that surveys find most families are satisfied with the results after their loved ones move from institutions to community placements.

 

Scandals preceded closure

The Iowa closure decision came after a series of scandals at the Glenwood Resource Center. Allegations included that insufficient medical care led to several deaths and that administrators planned unethical research on residents. Top administrators were ousted, and the U.S. Justice Department began investigating as allegations of poor care continued.

Federal investigators determined that Iowa violated Glenwood Resource Center residents’ rights and that the state relied too much on institutional care.

Justice Department officials declined to comment for this article, noting that negotiations over a legal settlement with the state are ongoing.

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