As state institutions close, families of longtime residents suffer

GLENWOOD, Iowa — Mike Lee’s lifeline has faded across most of the United States, and it will soon disappear from southwest Iowa.

Lee, 57, spent 44 years at Glenwood Resource Center, a state-run facility for people with intellectual or developmental disabilities. He has autism and epilepsy, and his parents decided when he was 13 that he needed the structure and constant supervision provided by a large facility.

Then they had a common decision. It is no more.

The number of Americans living in such institutions has fallen by more than 90% since the late 1960s. Seventeen states have closed all of their major public institutions for people with disabilities. Only five states — Iowa, Nebraska, South Carolina, Utah and Wyoming — have no closures, according to an expert at the University of Minnesota.

Iowa announced in April that in 2024 it would close the Glenwood Resource Center, a sprawling campus near the state’s western border. State leaders have cited federal pressure to improve conditions for the facility’s residents or relocate them.

Many of the remaining residents of such places have lived there for decades, with options to choose from when their families close.

Lee knows he’ll be moving soon, even if he doesn’t understand all the implications.

His sister, Connie Bowen, discussed the matter during a recent visit. He picked up his brother from the one-story house where he lives with other residents on the grounds of the institution and took him to a nearby pizza hut for lunch.

As he sipped the root beer, he asked how it felt. “Does it make you sad or happy that you’re leaving?” she said.

“Happy! I am happy,” he replied.

One photo shows Mike Lee sitting on a bench outside with his sister Connie Bowen.
Mike Lee sits with sister Connie Bowen outside the one-story house where he lives on the campus of Iowa’s Glenwood Resource Center, a state-run facility for people with intellectual or developmental disabilities slated to close in 2024.(Tony Leis/KHN)

Lee wore a black T-shirt emblazoned with a bald eagle, the American flag and “Land of the free, home of the brave.” She said she is looking forward to a quiet life away from the institution, where she said other residents are often disturbed.

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 the new measures may not be safe for people who have been institutionalized for decades.

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

“Yes, I know,” he said.

Declining census

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 obstacles than Lee. Some cannot speak. Many also have physical disabilities that make getting around difficult and can pose life-threatening risks. Some residents may become confused or agitated.

Cheryl Larson, a researcher at the University of Minnesota who researches institutional care for people with disabilities, said Iowa has lagged behind other states in closing such facilities.

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

The closure stemmed in part from a 1999 decision by the US Supreme Court Olmsted v. LCwhich held that Americans with disabilities have the right to live in the least restrictive environment that is practical.

A photo shows an old building at the Glenwood Resource Center.  It is a large brick building labeled, "Girls cottage."
The 380-acre campus of the Glenwood Resource Center in Iowa contains many large, old buildings, dating back to the days when people with disabilities were warehoused.(Tony Leis/KHN)

Like Glenwood, most state institutions opened more than a century ago and were usually built in rural areas. “There was a movement to create a bucolic environment for individuals,” said Mary Sowers, executive director of the National Association of State Directors of Developmental Disabilities Services.

Many large establishments included farms, where residents helped grow their food. The conventional wisdom was that country life would be healthier. Now, Sowers says, “we recognize that larger settings haven’t really lived up to that promise, and that individuals are able to thrive more when they’re able to live in the community.”

Sowers said about 1.3 million Americans are served by public programs for people with intellectual or developmental disabilities. Only 1% of them live in large state institutions.

Larson said the families of the remaining residents of the facility may feel overwhelmed by expert advice. Years ago, medical professionals told parents that their children would be best served in such a place. Now, those same families are being urged to evacuate their loved ones. “It’s really hard for them to accept what they thought was the right thing to do — and now to be told it wasn’t the right thing to do,” he said.

Larson said the last 50 years have seen waves of state mental hospital closures moving away from institutions for people with intellectual or developmental disabilities. Critics claim that as large state mental hospitals were closed, they were not replaced with adequate community services. This caused a surge in people with untreated mental illness living on the streets or in jails and prisons.

Facilities like the Glenwood Resource Center serve people with intellectual disabilities, such as severe autism and traumatic brain injury. Larson said community services for people with intellectual disabilities have increased, and surveys show that most families are satisfied with the outcome after their loved ones move from institutions to community placements.

Close the scandal before

The decision to close Iowa came after a series of scandals at the Glenwood Resource Center. Allegations include that inadequate medical care led to several deaths and that administrators planned unethical research on residents. Top administrators were ousted, and the US Department of Justice opened an investigation into allegations of poor care.

Federal investigators determined that Iowa violated the rights of residents at the Glenwood Resource Center and that the state relies heavily on institutional care.

Justice Department officials declined to comment for this article, noting that discussions with the state about a legal settlement are ongoing.

In the wake of the scandal, Iowa leaders assured residents’ families that they have no plans to close one of the state’s two facilities for people with disabilities. But the message changed abruptly in April, when state officials announced that the Glenwood Resource Center would close. They cited the high cost of complying with federal expectations if it remained open.

State and federal governments spend about $392,000 per resident per year on institutions.

Kelly Garcia, Iowa’s director of health and human services, said she understands that contemplating any move can be stressful for residents and their families. But he said Iowa has been stuck in an outdated role for such institutions for too long. “The idea that you’re admitted at age 2 and you live to be 80, that’s not the way we as a society want to support a person anymore,” he said.

Garcia said administrators are trying to arrange for longtime roommates and friends to stay together when they move out and to keep people closer to their families.

He said the state is committed to providing funding and expertise to private organizations that will assist residents of the former Glenwood Resource Center. He noted that the state has already helped such organizations raise wages so they can recruit and retain caregivers. Garcia said those who take on high-demand clients may qualify to pay extra for the change.

Garcia said the state’s commitment is one reason more than 30 companies showed up for a “provider fair” at the institution’s gym in July. Residents’ families and guardians met with personal care providers and considered their options.

Crest Services, a residential care organization for people with disabilities, sent representatives to the event. Director Bob Sweigert said in a recent interview that his agency is looking to arrange community placements for 10 residents of the Glenwood Resource Center. Finding suitable housing for residents, including those who use wheelchairs, is the main hurdle, Sweigert said. His company may restore some houses for that purpose.

Swigert said he and his staff are assuring residents’ families that they will continue to provide essential services with around-the-clock staffing. “They’re worried, they’re concerned – which is very understandable,” he said. “These people have to move out of their lifetime homes.”

One picture shows a one-story house with a large concrete driveway
Residents of the Glenwood Resource Center in Iowa now live in ranch-style homes instead of large buildings. Each house houses a few residents, and is cared for by staff.(Tony Leis/KHN)

The institution’s 380-acre campus features numerous ranch-style homes, where residents are supervised by staff. It has several large old buildings, from the days when disabled people were warehoused. It also includes a fire station, a greenhouse, a water tower, and a cemetery containing the graves of hundreds of people who died at the institution since the 1800s.

The facility is an important part of life in Glenwood, a town of about 5,000 people near the Missouri River. The company has about 470 employees, making it the largest employer in the area with relatively good wages and benefits. Two or three generations of many local families have worked there.

Some may find new jobs in the Omaha, Nebraska, area, which is less than an hour away, but city leaders worry that others will move away. Some may transfer to a similar state-owned facility in the city of Woodward, 150 miles to the northeast.

‘Last Ones Out’

Some residents of the institution will never understand the situation. One is Seth Finken, 43, who has lived at the Glenwood Resource Center since 1984. Childhood meningitis damaged his brain and left him blind, deaf and medically fragile.

His mother, Sybil Finken, lives in Glenwood and saw few options for her son in the area. The most advanced care programs he’s talked to are in big cities, like Des Moines or Dubuque “This is Seth’s community,” she said. “I don’t want him to be away for two or four hours.”

For years, Sybil Finken called on Iowa to operate the Glenwood Resource Center. He knew that most other states had closed institutions for people with disabilities. He thought Iowa would eventually follow suit, but he believed longtime residents could live out their lives there.

Now, she said, all she can do is talk to private care agencies and hope someone figures out how to keep her son safe in a community setting.

“Seth and I are going to be the last ones out the door,” she said.

One photo shows Seth and Sybil Finken sitting together.
Seth Finken (left) with his mother Sybil Finken. Seth has been a resident of the Glenwood Resource Center since 1984.(Des Moines Register)

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