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GLENWOOD (Iowa) — Mike Lee’s way to live has disappeared in most of the United States and will soon disappear from southwestern Iowa.
Lee, 57, spent 44 years at Glenwood Resource Center. It is a state-run facility for people with intellectual and developmental disabilities. His parents, who have epilepsy and autism, decided that he would benefit from the structure and supervision offered by large facilities when he was 13.
They made a joint decision at the time. It is no longer.
Since the 1960s, more Americans live in these institutions than ever before. 17 states have shut down all large public institutions that serve people with disabilities. According to an expert from the University of Minnesota, only five states — Iowa Nebraska, South Carolina and Utah — have closed all their large public institutions for people with disabilities.
In April, Iowa announced that it would close the Glenwood Resource Center in 2024. This sprawling campus was located near Iowa’s western border. Federal pressure was cited by state leaders to improve the conditions of residents at the facility or relocate them elsewhere.
Many of these places’ residents have been there for many decades and left their families with difficult choices when closings occur.
Lee is certain that he will soon move, even though he may not fully understand the implications.
Connie Bowen, his sister, raised the topic during a recent visit. She collected her brother from his one-story home and took him to a nearby Pizza Hut for lunch.
She asked him how he felt as he sipped on root beer. She asked him if he felt sad or happy about his departure.
“Happy! He replied, “Happy!”
Lee wore a black Tshirt with the American flag and a bald Eagle on it.
Bowen, her brother’s legal guardian agrees with the idea of caring in apartments or homes for persons with disabilities. She worries, however, that people who have been in institutions for many decades might not be able to benefit from the new arrangements.
Bowen said to Lee, “I hope you can find a good spot that will take good care of your needs.”
He said, “Yeah. I know.”
Glenwood Resource Center was established as an orphanage back in the 1860s. It housed over 1,900 people during its peak period in the 1950s. There are now 134 residents.
Lee is not the only one who faces more obstacles than Lee. Some people are unable to speak. Many people have disabilities that make it difficult to get around and pose life-threatening dangers. Some residents may become confused or agitated.
Sheryl Larson, University of Minnesota researcher, says Iowa is behind other states when it comes to closing down institutional care for people with disabilities.
According to to a paper Larson contributed to, the number of Americans who live in state-run institutions has dropped from 194,650 to 17,596 between 1967 and 2018.
These closures were partly triggered by the 1999 U.S. Supreme Court decision in Olmstead v. L.C. which held that Americans with disabilities are entitled to live in the most restrictive environment possible.
Glenwood is not the only state institution that opened over a century ago. They were often built in rural areas. Mary Sowers (executive director of the National Association of State Directors of Developmental Disabilities Services) stated that there was a movement for a more rural environment.
Many large institutions had farms where residents could grow their own food. The assumption was that country life would lead to good health. Sowers stated that “we realize that larger settings don’t live up to that promise and that individuals thrive when they are able be part of communities.”
Sowers stated that about 1.3 million Americans receive public programs for people with developmental or intellectual disabilities. About 1% live in large state institutions.
Larson stated that families of those who are still living in the institutions may feel like they have been beaten up by experts’ advice. In the past, doctors advised parents that such facilities were best for their children. These same families are now urged to relocate their loved ones. She said that they did the right thing and are now being told that it was wrong.
Larson stated that the transition from institutions for people with intellectual and developmental disabilities to community services has been more successful than the 50-year-old wave of state mental hospitals closings. Critics claim that large state mental hospitals were closed and not replaced with adequate community services. This led to a rise in the number of people living in poverty or in jails with untreated mental illness.
Glenwood Resource Center is a facility that serves people with intellectual disabilities such as brain injuries and severe autism. Larson stated that community services have increased for people with intellectual disabilities and that most families are happy with the results of surveys after their loved ones move to community placements.
Closures are Preceded by Scandals
After a number of scandals at Glenwood Resource Center, the Iowa closure was made. Several residents died due to insufficient medical care. Administrators also planned unethical research. The U.S. Justice Department started investigating as more allegations of poor care were made.
Federal investigators found that Iowa had violated Glenwood Resource Center residents rights and that the state relied too heavily on institutional care.
Officials from the Justice Department declined to comment on this article. However, they noted that negotiations for a legal settlement are ongoing with the state.
Iowa officials assured families of residents that they did not plan to close the two state institutions for people with disabilities. The message was abruptly altered in April when state officials declared that the Glenwood Resource Center would be closing. If the Glenwood Resource Center were to close, they cited the high costs of complying with federal expectations.
The federal and state governments spend approximately $392,000 each year at the institution by residents.
Kelly Garcia, Iowa’s director for health and human service, stated that she understands how stressful it can be for residents and their families to think about moving. She said that Iowa had too long held on to an obsolete role for these institutions. She said, “This idea that you are allowed at the age of 2 and then live to 80 years is not how we as a society would support a human being.”
Garcia stated that administrators are working to find ways for friends and long-time roommates to stay together after they move out, and to place people near their families.
She stated that the state will provide money and expertise for private agencies to support residents of Glenwood Resource Center. She said that the state had already assisted such agencies in raising their wages to hire and keep caregivers. Garcia stated that agencies that accept clients with special needs may be eligible for additional payments to help them make the transition.
Garcia stated that the state’s commitment was one reason why more than 30 agencies attended the “provider fair”, which took place in the gym of the institution in July. Guardians and families of residents met with private care providers to discuss their options.
Crest Services was a residential care provider for persons with disabilities. Representatives were sent to the event. In a recent interview, Director Bob Swigert stated that his agency is seeking to arrange community placements in order for 10 Glenwood Resource Center residents. Swigert stated that the main problem has been finding housing suitable for residents who are in wheelchairs. Swigert said that his company may retrofit homes to accomplish this purpose.
Swigert stated that he and his staff were reassuring residents’ families that they would continue to receive the necessary services, including 24-hour staffing. He said, “They are concerned, they are anxious — which makes it very understandable.” “These people are being asked to leave what they have called their home for most of their lives.”
Ranch-style homes are available on the 380-acre campus, where residents can live in close supervision from staff. Many of the buildings are large, old buildings that date back to when people with disabilities were stored. It includes a fire station and a greenhouse. A water tower is also included. There is also a cemetery that contains the remains of hundreds of people who died in the institution’s past since the 1800s.
Glenwood is a small town with approximately 5,000 residents near the Missouri River. The facility has been an integral part of Glenwood’s life. Nearly 470 people work at the institution, making it the biggest employer in the region. The benefits and wages are also very good. Many families from the area have employed there for two or three generations.
While some may find work in Omaha, Nebraska’s area, it is only an hour away. Town leaders are concerned that others might move away. A few might transfer to Woodward, 150 miles northeast, to another similar state-owned institution.
‘Last Ones Out’
The situation will be confusing to some of the residents. Seth Finken (43), has been a resident of Glenwood Resource Center since 1984. His brain was damaged by childhood meningitis, which left him deaf and blind.
Sybil Finken, his mother, lives in Glenwood and has few options for her son. She has spoken to people in larger cities like Dubuque and Des Moines about the most advanced care programs. She said, “This is Seth’s community.” “I don’t want him moving more than four hours away.”
Sybil Finken has been calling for Iowa to continue operating Glenwood Resource Center for many years. She was aware that most states had shut down institutions for persons with disabilities. Iowa was likely to follow her lead, she thought. But, she trusted the assurances that long-term residents could continue living there.
She said that she cannot do anything but keep in touch with private agencies to find out how she can keep her son safe in a local setting.
She said, “Seth and me are going to the last ones out of the door,”