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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

Lee wore a black T-shirt decorated with a bald eagle, the American flag and the words “land of the free, home of the brave.” He said he is looking forward to a calmer life away from the institution, where he said other residents often become disruptive.

Bowen, who is her brother’s legal guardian, agrees in theory with the idea of caring for people with disabilities in homes or apartments. But like many other relatives of Glenwood Resource Center residents, she worries that the new arrangements might not be safe for people who have been institutionalized for decades.

“I hope I can find a good place that’ll take good care of you,” Bowen told Lee.

“Yeah, I know,” he said.

Dwindling census

The Glenwood Resource Center, founded as an orphanage in the 1860s, housed more than 1,900 people at its peak in the 1950s. Now, 134 people live there.

 

Many residents face more hurdles than Lee does. Some can’t speak. Many also have physical disabilities that make getting around difficult and can pose life-threatening risks. Some residents can become confused or agitated.

Sheryl Larson, a University of Minnesota researcher who tracks institutional care for people with disabilities, said Iowa lags behind most other states in winding down such facilities.

The number of Americans living in state-run institutions plummeted from 194,650 in 1967 to 17,596 in 2018, according to a recent paper that Larson helped write.

The closures partly stemmed from the U.S. Supreme Court’s 1999 decision in Olmstead v. L.C., which held that Americans with disabilities have a right to live in the least restrictive setting that is practical.

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