Advocacy group ‘very concerned’ about Glenwood’s current leadership

The U.S. Department of Justice has been investigating Iowa's Glenwood Resource Center for one year. (Photo courtesy of the U.S. Department of Justice)

Disability Rights Iowa says it remains “very concerned” about leadership at a troubled state-run home for people with disabilities, noting that state officials have ignored past complaints about resident deaths and inadequate medical care.

Last week, the U.S. Department of Justice wrapped up a yearlong investigation of the Glenwood Resource Center, which is home to roughly 185 profoundly disabled Iowans.

The investigation found that the home’s former superintendent, Jerry Rea, had launched an effort to conduct unauthorized and potentially dangerous experiments on residents of the home before he was fired in late 2019.

Some of the experiments involved sexual-arousal studies and some were based on questionable medical treatment for residents with pneumonia. In its report, the DOJ was highly critical of the Iowa Department of Human Services, which runs the western Iowa home, and suggested the agency’s “deliberate indifference” to concerns raised by others had contributed to residents’ deaths.

Disability Rights Iowa, a congressionally chartered organization that advocates for Iowans with disabilities, said this week that the state agency had “ignored” its complaints and recommendations regarding a spike in the number of deaths at Glenwood between 2017 and 2019 — an assertion the DOJ agrees with in its new report.

In that report, the DOJ says Disability Rights Iowa’s investigation into deaths at Glenwood “repeatedly found that Glenwood’s management of acute care needs was an area of concern in need of improvement.” The report says that in May 2019, Disability Rights Iowa recommended Glenwood take the “significant and drastic step” of conducting a thorough, root-cause analysis into delays involving hospital transfers. Then, 12 months ago, Disability Rights Iowa specifically called on Glenwood’s administration to examine the decision-making process of sending residents to the hospital.

Those recommendations “were largely ignored,” the DOJ report says — even though, by that time, federal investigators were on the Glenwood campus.

Jane Hudson, executive director of Disability Rights Iowa, says her organization is also “very concerned” that Marsha Edgington-Bott is now the superintendent at both Glenwood and its central-Iowa sister facility, the Woodward Resource Center.  The two facilities are 150 miles apart and serve a somewhat different mix of clients.

Hudson said while Edgington-Bott “is knowledgeable and experienced, it seems like it would be impossible for her to provide adequate supervision of facilities” which are so far apart.

“Hopefully, experienced deputy directors are also being hired to be on site at both facilities full time,” Hudson said.

The Department of Justice says it is continuing to investigate whether Glenwood residents, who are essentially institutionalized, are receiving services in the most community-integrated setting that’s appropriate, as required by the Americans with Disabilities Act. In June, Department of Human Services announced a new plan for improving community integration of the residents, calling it Building the Community 2020. That plan, according to DHS Director Kelly Garcia, is intended to help residents of the two resource centers “live healthy, safe, successful lives in the home and community of their choice.”

Hudson said DHS division administrator Marissa Eyanson discussed progress on that initiative at a recent meeting of the Iowa Developmental Disabilities Council, but provided few specifics. Eyerson “acknowledged that timelines had not been met,” Hudson said, particularly in respect to updating the assessments of the residents’ needs.

“The same problems at Glenwood have existed for years, despite numerous investigations and expert reports,” Hudson said. “These problems can never be resolved to the extent required because the location of Glenwood in an isolated geographic area makes it very difficult for the state to provide sufficient oversight and to hire well-trained medical, behavioral health and care staff to meet the residents’ needs.”

Hudson said the state agency should consider temporarily consolidating Woodward and Glenwood into a single location that has better access to skilled medical and behavioral health experts, with the goal of transitioning all residents from institutional care to home- and community-based services.

While other states have been moving in that direction for years, Iowa has struggled, largely because the state lacks a comprehensive network of community-based options for people with serious intellectual disabilities. The state’s Building the One Community plan indicates it will be five years before the process of transition and community integration are “infused and engrained into the operation” of the two resource centers.

Disability Rights Iowa is part of a national network of protection and advocacy groups established by Congress in the 1970s. It is tasked by Congress with responding to the abuse and neglect of people with disabilities who live in institutional settings.