As Iowa's Glenwood Resource Center shuts down, concerns persist about its residents' future

On a recent afternoon in Glenwood, Sybil Finken pulled up a photo on her phone of her son, Seth, that was sent by one of his caregivers. In it, Seth is wearing a T-shirt printed to look like a tuxedo and is surrounded by three smiling nursing home staffers.

“She said he’s having a happy day, so she took a picture and sent it to me,” Finken said. “That’s the kind of stuff they wouldn’t do at GRC. Everything was very protected. It’s a little looser now.”

She said Seth lived at Glenwood Resource Center, a state-run care facility for people with severe intellectual disabilities, for nearly 40 years. He got meningitis as a baby, which left him deaf, blind, and needing a wheelchair. Finken said Seth had problems with seizures in 2023 that landed him in the hospital, and after that, GRC wouldn’t let him back in.

State leaders had already announced in 2022 that they would close Glenwood Resource Center , and on Tuesday, they completed the two-year process of moving residents out. The southwest Iowa facility will officially close on June 30 , but Iowans who have had experience with GRC over the years are still worried about what the future holds for former residents and for the community of Glenwood.

Seth moved into a nursing home in Glenwood about a year ago.

“It was hard at first, because the people who cared for him didn’t really know his procedures,” Finken said. “And then they moved him to another house and he had to go through that again. So it’s just been a little hard for him to adapt to a new place. But he’s getting good care.”

Glenwood Resource Center, which was once home to hundreds of people with disabilities, grabbed national headlines about four years ago when federal investigators found senior staff were conducting harmful human subject experiments and providing poor medical care. There had also been a spike in deaths there , and the U.S. Department of Justice said Iowa was keeping too many people in institutions.

After all that, Iowa’s top health official said she couldn’t recruit the medical staff needed to keep GRC residents safe.

Finken, a long-time advocate for keeping the facility open, said the closure is a “terrible mistake.” While she said Seth’s life hasn’t changed very much since he moved into a nursing home, Finken said leaving GRC can be dangerous for some patients.

“I hope they find a safe place to be,” she said.

Since the closure began, 14 people died within one year of moving out of GRC, according to the Iowa Department of Health and Human Services. Five of them had been moved directly into hospice from GRC. Five other residents died at Glenwood before they could leave. Information from the state shows cancer, respiratory conditions, cardiac arrest and other chronic illnesses were among the causes of death.

Brady Werger, who lived at GRC for about seven years before moving out in 2018, said the state should continue to look out for former residents to ensure they’re properly cared for.

“I am scared with some of the clients that have moved out of Glenwood because I have seen some of them succeed really well, and I’ve seen some of them backtrack because they’re not getting the services they need,” he said.

Werger credits GRC with helping him get to where he is now: living in his own apartment in Waverly, and working two jobs with the support of caregivers who help him with things like cooking and managing money. He said the human experimentation was “horribly wrong,” but the state should have just addressed those problems and kept the facility open.

“It’s tough,” Werger said. “I mean, when I found out about them closing, I was almost in tears.”

Disability advocates have pushed for decades to close institutions like GRC, citing research that has shown better outcomes for people in community care compared to those in large group settings. But Werger and Finken said institutions need to remain as an option for some people with developmental disabilities.

Iowa is continuing to operate Woodward Resource Center, which has taken in 26 of the 147 Glenwood residents who were moved out. According to Iowa DHHS, 83 people went into community-based services, and the rest went to host homes, intermediate care facilities, nursing homes and hospice care.

Iowa DHHS Director Kelly Garcia said in a recent interview with IPR that she has heard positive stories about people who moved out of GRC, like getting to taste watermelon for the first time.

“And people smiling after having watermelon in ways that…people who are closest to them have never seen them smile,” she said. “There are barriers to mimicking what happens in the real world in an institutional setting, that despite best efforts, you really can’t overcome.”

Garcia gave the example of a person going to a grocery store for the first time and being able to pick out food.

“The world is a wide open place to that person,” she said.

Garcia said she believes all people with disabilities can be served in smaller, community-based settings, if the right support is available. She said the state has worked to build up those services to try to give people a choice of where they or their family members can live. However, she said Iowa still needs the Woodward Resource Center, and the state does not plan to close it at this time.

Richard Crouch, whose son died in 2022 after living at GRC for 37 years, said he is glad his son didn’t have to experience moving out. He said it’s “not a good situation” to be moving some people with severe disabilities, many of whom lived in the same place for decades.

“They’re used to this person coming in that knows them by the wink of an eye or the movement of a finger. It’s the little things like that, you know, that makes tears come to your eyes,” he said.

Crouch, who led the GRC parent/family group, said clients were generally well-cared for at facility, and he hopes that continues in their new homes.

As for how Crouch, Werger and Finken will remember GRC, they said some really bad things happened there, but that didn’t make it a bad place. For many Iowans, it was home.

“Yeah, there have been problems over the years,” Finken said. “You’re always going to have a bad egg. We see that, you know, in schools and organizations. But, my experience was very different from that. [Seth] was loved and cared for.”

Local officials worry about loss of Glenwood’s biggest employer

Crouch also chairs the Mills County Board of Supervisors. He said the economic impact of losing the county’s biggest employer is yet to be seen.

“When you take away the couple hundred people that were working there, they were still buying gas at the gas station. The grocery store was still selling them groceries, you know, the retail part of it,” Crouch said. “And you know, if there’s no work, they could end up leaving the community and moving on to someplace else.”

Others in Glenwood, a town of about 5,000 people, described the closure as “a big blow” and even “devastating” for the community.

Amber Farnan, the City of Glenwood’s administrator and finance director, said the loss of jobs will be the biggest impact of the closure.

“That loss of jobs is going to be hard to recover from,” she said.

Iowa DHHS has offered jobs to GRC employees in other parts of the state. Other GRC staff will likely find jobs in nearby Council Bluffs and Omaha.

Then, there’s the question of what will happen to the 380-acre, green, hilly Glenwood Resource Center campus that was once home to children who were orphaned during the Civil War. It includes buildings that are well over 100 years old, large houses that served as home-like settings for residents and a cemetery where hundreds of people are buried.

A local task force has created a plan with the help of the state to eventually sell parts of the land for housing developments. But local officials say redevelopment could take decades.

“We are really satisfied with the plan,” Farnan said. “We also understand that this is a long-term goal. It’s not something that’s going to happen in five years.”

But, she said she believes it can be accomplished.

IPR's Natalie Krebs contributed to this report.