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Feds: Iowa violates rights of severely disabled people

Investigators condemn state’s institutional approach

Feds: Iowa violates rights of severely disabled people
Feds: Iowa violates rights of severely disabled people
A sign with a smiling face greets drivers Dec. 19, 2019, as they enter the Glenwood Resource Center campus in Glenwood. Iowa lawmakers said at the time they would hold hearings on sexual experiments and deaths at the state-run facility for people with intellectual disabilities. (Kelsey Kremer/Des Moines Register via AP)
Iowa Department of Human Services Director Kelly Garcia is pictured Dec. 6, 2019, in Cedar Rapids. (The Gazette)

DES MOINES — The U.S. Department of Justice issued a strong condemnation Wednesday of the way Iowa treats people with intellectual and developmental disabilities, telling the state it must find ways to care for the disabled people in community settings and not in institutions.

In a letter and a 33-page report sent to state officials, Kristen Clarke, an assistant attorney general in the Justice Department's civil rights division, said that after a yearlong investigation the division concluded there is reasonable cause to believe Iowa violates the Americans with Disabilities Act by failing to provide services that integrate people with intellectual disabilities into their communities.

"Iowa has failed to address known deficiencies in the availability of community-based services and supports that contribute to needless institutionalization of people with IDD," the report said.

It said state officials have known for years that community-based support for people with complex medical and behavioral needs is insufficient and have acknowledged they failed to meaningfully assess the capacity of the community service system.

State officials largely agreed and promised to explore new services.

"Although these findings are significant and we take them incredibly seriously, we are not surprised by anything identified in the report," Iowa Department of Human Services Director Kelly Garcia said in a statement. "With new leadership, my team is committed to building out the array of services to ensure individuals are able to live their most independent lives possible."

Garcia said discussions continue with the state's lawyers.

The federal investigation involved two state-run facilities at Glenwood, in western Iowa, and Woodward, near Des Moines, which house 285 people with complex behavioral or medical needs. It also looked at Iowa's system of housing about 1,800 people with similar needs in private care facilities or institutions.

Federal officials said Iowa has among the fifth-highest population of residents in the nation with intellectual disabilities in these institutional settings. The state also has as many as 1,000 more people with similar needs in nursing homes, and the state likely has the fourth-highest number of people with developmental disabilities in nursing homes.

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While most states have worked to move people out of institutions and the populations have fallen nationally by about 50 percent since 1982, Iowa has maintained the same level of institutionalization all that time.

"The state plans, administers, and funds its public health care service system in a manner that unnecessarily segregates people with intellectual disabilities in the resource centers, and almost certainly many other institutions, rather than providing these services where people live, in their community," the report said.

The state was investigated in 2002, and the Justice Department concluded that conditions at Glenwood and Woodward were constitutionally deficient. An agreement was reached then for the state to "encourage and assist people to move to the most integrated settings." In 2007, Iowa obtained a grant to help with its "pervasive attitude" toward placing people with developmental disabilities in institutions.

The report said that despite some efforts, the same problems remain today and "critical community services and supports including the crisis intervention and behavioral supports identified a decade ago are still underdeveloped."

On Nov. 21, 2019, the Justice Department notified Iowa of a new investigation. It issued a report in December 2020 that said the Glenwood center likely violated the constitutional rights of residents by subjecting them to human experiments, including sexual arousal research, some of which were deemed dangerous by investigators. Federal officials notified the state that it would continue to investigate the state-run facilities for other possible violations, and the report released Wednesday is the result.

The investigators found that the state-run institutions rarely provide opportunities for people to experience or learn about community options and residents lack regular opportunities to spend time outside the facility, engage with people in the community and experience a variety of community activities.

Despite increasing interest being expressed by residents of the institutions to move into the community, the report said more people left the institutions by dying during the past four years than by transitioning into the community.

Senior state officials acknowledge that the pace of transitions is "slower than anyone would have wished for," the report said.

The report said Iowa spends significant resources on institutional care, even though state data shows that it is less expensive, on average, to provide community-based services instead.

The Justice Department said Iowa must promptly implement measures to remedy the problems. Failure to come up with a plan in cooperation with the department will result in a lawsuit to ensure compliance with federal law, the agency said.

A copy of the report was sent to Garcia, the Iowa Attorney General and two federal prosecutors in Iowa.