Federal report: Iowa violates rights of disabled people

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

Iowa Institutions-Disabilities Act (© 2020 Brian Powers/The Register)

The U.S. Department of Justice on Wednesday issued a strong condemnation of the way Iowa treats people with intellectual and developmental disabilities, telling the state it must find ways to care for 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 they have concluded there is reasonable cause to believe Iowa violates the federal 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 that they have 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. “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 on next steps.

The DOJ investigation involved two state-run facilities at Glenwood and Woodward, 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 with intellectual disabilities in these institutional settings in the U.S. 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.

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

“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 DOJ 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 DOJ 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 federal 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 by dying during the past four years than by transitioning into the community.

Senior 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 rather than institutional services.

The DOJ said Iowa must promptly implement measures to remedy the problems, including increasing community capacity by expanding services and removing restrictions on community services, developing and implementing an effective system to disseminate information about community services and ensuring that people who have transitioned from institutions to the community and those who may be at serious risk of institutionalization are receiving necessary services.

Failure to come up with a plan in cooperation with the DOJ 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.