GLENWOOD, Iowa \u2014 Mike Lee\u2019s way of life has faded away in most of the United States, and it soon will vanish from southwestern Iowa.<\/p>\n

Lee, 57, has spent 44 years at the Glenwood Resource Center, a state-run institution 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 oversight offered by a large facility.<\/p>\n

Theirs was a common decision at the time. It no longer is.<\/p>\n

The number of Americans living in such institutions has dropped more than 90%<\/a> since the late 1960s. Seventeen states have closed all their large public institutions for people with disabilities. Just five states \u2014 Iowa, Nebraska, South Carolina, Utah, and Wyoming \u2014 haven\u2019t closed any, according to a University of Minnesota expert.<\/p>\n

Iowa announced in April that in 2024 it would shutter the Glenwood Resource Center, a sprawling campus near the state\u2019s western border. State leaders cited federal pressure to improve conditions for the facility\u2019s residents or place them elsewhere.<\/p>\n

Many of the remaining residents of such places have lived there for decades, leaving their families with wrenching choices when closures loom.<\/p>\n

Lee knows he will move soon, even if he doesn\u2019t understand all the implications.<\/p>\n

His sister, Connie Bowen, broached the subject during a recent visit. She picked her brother up from the one-story house where he lives with several other residents on the institution\u2019s grounds and drove him to a nearby Pizza Hut for lunch.<\/p>\n

As he sipped on a root beer, she asked how he felt. \u201cDoes it make you sad or happy that you\u2019re leaving?\u201d she said.<\/p>\n

\u201cHappy! I\u2019m happy,\u201d he replied.<\/p>\n

Mike Lee sits with sister Connie Bowen outside the one-story house where he lives on the campus of Iowa\u2019s Glenwood Resource Center, a state-run institution for people with intellectual or developmental disabilities that is set to close in 2024.(Tony Leys \/ KHN)<\/span><\/figcaption><\/figure>\n
Lee wore a black T-shirt decorated with a bald eagle, the American flag, and the words \u201cland of the free, home of the brave.\u201d He said he is looking forward to a calmer life away from the institution, where he said other residents often become disruptive.<\/p>\n
Bowen, who is her brother\u2019s 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 that the new arrangements might not be safe for people who have been institutionalized for decades.<\/p>\n
\u201cI hope I can find a good place that\u2019ll take good care of you,\u201d Bowen told Lee.<\/p>\n
\u201cYeah, I know,\u201d he said.<\/p>\n
**Dwindling Census<\/strong><\/p>\n**
**The 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.<\/p>\n**
Many residents face more hurdles than Lee does. Some can\u2019t speak. Many also have physical disabilities that make getting around difficult and can pose life-threatening risks. Some residents can become confused or agitated.<\/p>\n
**Sheryl Larson, a University of Minnesota researcher who tracks institutional care for people with disabilities, said Iowa lags behind most other states in winding down such facilities.<\/p>\n**
**The number of Americans living in state-run institutions plummeted from 194,650 in 1967 to 17,596 in 2018, according** **to a recent paper<\/a> that Larson helped write.<\/p>\n**
The closures partly stemmed from the U.S. Supreme Court\u2019s 1999 decision in *Olmstead v. L.C.<\/em><\/a>, which held that Americans with disabilities have a right to live in the least restrictive setting that is practical.<\/p>\n*
*$\"A$* The Glenwood Resource Center\u2019s 380-acre campus in Iowa includes several large, older buildings, from the days when people with disabilities were warehoused.(Tony Leys \/ KHN)<\/span><\/figcaption><\/figure>\n
Like Glenwood, most state institutions opened more than a century ago, and they typically were constructed in rural areas. \u201cThere was a movement to create a bucolic environment for individuals,\u201d said Mary Sowers, executive director of the National Association of State Directors of Developmental Disabilities Services.<\/p>\n
Many of the big institutions included farms, where residents helped grow their food. Conventional wisdom held that country life would be healthful. Now, Sowers said, \u201cwe recognize that the larger settings really didn\u2019t wind up living up to that promise, and individuals are able to thrive more when they\u2019re able to live in communities.\u201d<\/p>\n
Sowers said about 1.3 million Americans are served by public programs for people with intellectual or developmental disabilities. Only about 1% of them live in large state institutions.<\/p>\n
Larson said families of the institutions\u2019 remaining residents may feel whipsawed by experts\u2019 advice. Years ago, medical professionals told parents that their children could best be served in such places. Now, those same families are urged to move their loved ones out. \u201cThey did what they thought was the right thing to do \u2014 and now to be told it wasn\u2019t the right thing to do is really, really hard for them to accept,\u201d she said.<\/p>\n
The transition away from institutions for people with intellectual or developmental disabilities has been handled better than the wave of state mental hospital closures over the past 50 years, Larson said. Critics contend that as large state mental hospitals were shuttered, they weren\u2019t replaced with sufficient community services. That sparked a surge in people with untreated mental illnesses living on the streets or in jails and prisons.<\/p>\n
Facilities like the Glenwood Resource Center serve people with intellectual disabilities, such as severe autism and brain injuries. Larson said that community services for people with intellectual disabilities have increased and that surveys find most families are satisfied with the results after their loved ones move from institutions to community placements.<\/p>\n
**Scandals Preceded Closure<\/strong><\/p>\n**
**The Iowa closure decision came after a series of scandals at the Glenwood Resource Center. Allegations included that** insufficient medical care led to several deaths<\/a> and that administrators planned unethical research<\/a> on residents. Top administrators were ousted, and the U.S. Justice Department began investigating as allegations of poor care continued<\/a>.<\/p>\n
**Federal investigators determined that Iowa violated Glenwood Resource Center residents\u2019 rights and that the state relied too much on institutional care.<\/p>\n**
**Justice Department officials declined to comment for this article, noting that negotiations over a legal settlement with the state are ongoing.<\/p>\n**
In the scandal\u2019s wake, Iowa leaders assured residents\u2019 families that they had no plans to close either of the state\u2019s two institutions for people with disabilities. But the message abruptly changed in April, when state officials announced<\/a> the Glenwood Resource Center would close. They cited the high cost of complying with federal expectations if it were to stay open.<\/p>\n
**The state and federal governments spend about $392,000 per resident<\/a> annually at the institution.<\/p>\n**
Kelly Garcia, Iowa\u2019s director of health and human services, said she understands that contemplating a move can be stressful for residents and their families. But she said Iowa clung too long to an outdated role for such institutions. \u201cThis notion that you are admitted at age 2 and you live 80 years there is no longer the way we as a society would want to support a human being,\u201d she said.<\/p>\n
**Garcia said administrators are trying to arrange for longtime roommates and friends to stay together when they move out and for people to be placed near their families.<\/p>\n**
She said the state is committed to providing money and expertise to the private agencies that will support former Glenwood Resource Center residents. She noted the state has already helped such agencies raise wages so they can hire and retain caregivers. Those that take on clients with high needs could qualify for extra payments to make the transition, Garcia said.<\/p>\n
Garcia said the state\u2019s commitment is one reason more than 30 agencies showed up in July for a \u201cprovider fair\u201d in the institution\u2019s gym. Residents\u2019 families and guardians met with private care providers and considered their options.<\/p>\n
Crest Services<\/a>, a residential care company for people with disabilities, sent representatives to the event. Director Bob Swigert said in a recent interview that his agency is looking to arrange community placements for 10 residents of the Glenwood Resource Center. The main hurdle has been finding suitable housing for the residents, including those who use wheelchairs, Swigert said. His company might retrofit some homes for that purpose.<\/p>\n
Swigert said he and his staff are reassuring residents\u2019 families that they will continue to have necessary services, including round-the-clock staffing. \u201cThey\u2019re concerned, they\u2019re anxious \u2014 which is very understandable,\u201d he said. \u201cThese individuals are being required to move from what has pretty much been their lifetime home.\u201d<\/p>\n
$\"A$
Residents of the Glenwood Resource Center in Iowa now live in ranch-style houses, instead of large buildings. Each house is home to a few residents, with staff caring for them.(Tony Leys \/ KHN)<\/span><\/figcaption><\/figure>\n
The institution\u2019s 380-acre campus includes numerous ranch-style homes, where residents live with oversight from staff. It has several large old buildings, from days when people with disabilities were warehoused. It also includes a fire station, a greenhouse, a water tower, and a cemetery containing the graves of hundreds of people who have died at the institution since the 1800s.<\/p>\n
The facility has been a vital part of life in Glenwood, a town of about 5,000 people near the Missouri River. The institution has nearly 470 workers, 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.<\/p>\n
Some may find new jobs in the Omaha, Nebraska, area, which is less than an hour away, but town leaders worry others will move away. A few may transfer to a similar institution owned by the state in the town of Woodward, which is 150 miles to the northeast.<\/p>\n
**\u2018Last Ones Out\u2019<\/strong><\/p>\n**
Some of the institution\u2019s residents 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.<\/p>\n
His mother, Sybil Finken, lives in the town of Glenwood and sees few options for her son in the region. The most advanced care programs she has talked to are in bigger cities, such as Des Moines or Dubuque. \u201cThis is Seth\u2019s community,\u201d she said. \u201cI don\u2019t want him moving two or four hours away.\u201d<\/p>\n
For years, Sybil Finken called for Iowa to keep operating the Glenwood Resource Center. She knew most other states had closed institutions for people with disabilities. She figured Iowa would follow suit eventually, but she believed assurances that longtime residents could live out their lives there.<\/p>\n
**Now, she said, all she can do is keep talking to private care agencies and hope someone figures out how to keep her son safe in a community setting.<\/p>\n**
**\u201cSeth and I are going to be the last ones out the door,\u201d she said.<\/p>\n**
**$\"A$** Seth Finken (left) with his mother, Sybil Finken. Seth has lived at the Glenwood Resource Center since 1984.(Des Moines Register)<\/span><\/figcaption><\/figure>\n
\n
\n\t\t\t\t\t\t\t\t\t\t\tTony Leys: <\/span>
\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t tleys@kff.org<\/a>,\t\t\t\t\t\t\t\t\t\t\t
\n\t\t\t\t\t\t\t@tonyleys<\/a>\n\t\t\t\t\t\t\t\t\t<\/p>\n<\/aside>\n
\n
\n
\n\t\t\t\tRelated Topics\t\t\t<\/h3>\n
\t\t\t\t
\n\t\t\tContact Us\t\t<\/a>
\n\t\t
\n\t\t\tSubmit a Story Tip\t\t<\/a>\n\t<\/div>\n<\/section><\/div>\n

Mike Lee sits with sister Connie Bowen outside the one-story house where he lives on the campus of Iowa\u2019s Glenwood Resource Center, a state-run institution for people with intellectual or developmental disabilities that is set to close in 2024.(Tony Leys \/ KHN)<\/span><\/figcaption><\/figure>\n
Lee wore a black T-shirt decorated with a bald eagle, the American flag, and the words \u201cland of the free, home of the brave.\u201d He said he is looking forward to a calmer life away from the institution, where he said other residents often become disruptive.<\/p>\n
Bowen, who is her brother\u2019s 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 that the new arrangements might not be safe for people who have been institutionalized for decades.<\/p>\n
\u201cI hope I can find a good place that\u2019ll take good care of you,\u201d Bowen told Lee.<\/p>\n
\u201cYeah, I know,\u201d he said.<\/p>\n
**Dwindling Census<\/strong><\/p>\n**
**The 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.<\/p>\n**
Many residents face more hurdles than Lee does. Some can\u2019t speak. Many also have physical disabilities that make getting around difficult and can pose life-threatening risks. Some residents can become confused or agitated.<\/p>\n
**Sheryl Larson, a University of Minnesota researcher who tracks institutional care for people with disabilities, said Iowa lags behind most other states in winding down such facilities.<\/p>\n**
**The number of Americans living in state-run institutions plummeted from 194,650 in 1967 to 17,596 in 2018, according** **to a recent paper<\/a> that Larson helped write.<\/p>\n**
The closures partly stemmed from the U.S. Supreme Court\u2019s 1999 decision in *Olmstead v. L.C.<\/em><\/a>, which held that Americans with disabilities have a right to live in the least restrictive setting that is practical.<\/p>\n*
*$\"A$* The Glenwood Resource Center\u2019s 380-acre campus in Iowa includes several large, older buildings, from the days when people with disabilities were warehoused.(Tony Leys \/ KHN)<\/span><\/figcaption><\/figure>\n
Like Glenwood, most state institutions opened more than a century ago, and they typically were constructed in rural areas. \u201cThere was a movement to create a bucolic environment for individuals,\u201d said Mary Sowers, executive director of the National Association of State Directors of Developmental Disabilities Services.<\/p>\n
Many of the big institutions included farms, where residents helped grow their food. Conventional wisdom held that country life would be healthful. Now, Sowers said, \u201cwe recognize that the larger settings really didn\u2019t wind up living up to that promise, and individuals are able to thrive more when they\u2019re able to live in communities.\u201d<\/p>\n
Sowers said about 1.3 million Americans are served by public programs for people with intellectual or developmental disabilities. Only about 1% of them live in large state institutions.<\/p>\n
Larson said families of the institutions\u2019 remaining residents may feel whipsawed by experts\u2019 advice. Years ago, medical professionals told parents that their children could best be served in such places. Now, those same families are urged to move their loved ones out. \u201cThey did what they thought was the right thing to do \u2014 and now to be told it wasn\u2019t the right thing to do is really, really hard for them to accept,\u201d she said.<\/p>\n
The transition away from institutions for people with intellectual or developmental disabilities has been handled better than the wave of state mental hospital closures over the past 50 years, Larson said. Critics contend that as large state mental hospitals were shuttered, they weren\u2019t replaced with sufficient community services. That sparked a surge in people with untreated mental illnesses living on the streets or in jails and prisons.<\/p>\n
Facilities like the Glenwood Resource Center serve people with intellectual disabilities, such as severe autism and brain injuries. Larson said that community services for people with intellectual disabilities have increased and that surveys find most families are satisfied with the results after their loved ones move from institutions to community placements.<\/p>\n
**Scandals Preceded Closure<\/strong><\/p>\n**
**The Iowa closure decision came after a series of scandals at the Glenwood Resource Center. Allegations included that** insufficient medical care led to several deaths<\/a> and that administrators planned unethical research<\/a> on residents. Top administrators were ousted, and the U.S. Justice Department began investigating as allegations of poor care continued<\/a>.<\/p>\n
**Federal investigators determined that Iowa violated Glenwood Resource Center residents\u2019 rights and that the state relied too much on institutional care.<\/p>\n**
**Justice Department officials declined to comment for this article, noting that negotiations over a legal settlement with the state are ongoing.<\/p>\n**
In the scandal\u2019s wake, Iowa leaders assured residents\u2019 families that they had no plans to close either of the state\u2019s two institutions for people with disabilities. But the message abruptly changed in April, when state officials announced<\/a> the Glenwood Resource Center would close. They cited the high cost of complying with federal expectations if it were to stay open.<\/p>\n
**The state and federal governments spend about $392,000 per resident<\/a> annually at the institution.<\/p>\n**
Kelly Garcia, Iowa\u2019s director of health and human services, said she understands that contemplating a move can be stressful for residents and their families. But she said Iowa clung too long to an outdated role for such institutions. \u201cThis notion that you are admitted at age 2 and you live 80 years there is no longer the way we as a society would want to support a human being,\u201d she said.<\/p>\n
**Garcia said administrators are trying to arrange for longtime roommates and friends to stay together when they move out and for people to be placed near their families.<\/p>\n**
She said the state is committed to providing money and expertise to the private agencies that will support former Glenwood Resource Center residents. She noted the state has already helped such agencies raise wages so they can hire and retain caregivers. Those that take on clients with high needs could qualify for extra payments to make the transition, Garcia said.<\/p>\n
Garcia said the state\u2019s commitment is one reason more than 30 agencies showed up in July for a \u201cprovider fair\u201d in the institution\u2019s gym. Residents\u2019 families and guardians met with private care providers and considered their options.<\/p>\n
Crest Services<\/a>, a residential care company for people with disabilities, sent representatives to the event. Director Bob Swigert said in a recent interview that his agency is looking to arrange community placements for 10 residents of the Glenwood Resource Center. The main hurdle has been finding suitable housing for the residents, including those who use wheelchairs, Swigert said. His company might retrofit some homes for that purpose.<\/p>\n
Swigert said he and his staff are reassuring residents\u2019 families that they will continue to have necessary services, including round-the-clock staffing. \u201cThey\u2019re concerned, they\u2019re anxious \u2014 which is very understandable,\u201d he said. \u201cThese individuals are being required to move from what has pretty much been their lifetime home.\u201d<\/p>\n
$\"A$
Residents of the Glenwood Resource Center in Iowa now live in ranch-style houses, instead of large buildings. Each house is home to a few residents, with staff caring for them.(Tony Leys \/ KHN)<\/span><\/figcaption><\/figure>\n
The institution\u2019s 380-acre campus includes numerous ranch-style homes, where residents live with oversight from staff. It has several large old buildings, from days when people with disabilities were warehoused. It also includes a fire station, a greenhouse, a water tower, and a cemetery containing the graves of hundreds of people who have died at the institution since the 1800s.<\/p>\n
The facility has been a vital part of life in Glenwood, a town of about 5,000 people near the Missouri River. The institution has nearly 470 workers, 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.<\/p>\n
Some may find new jobs in the Omaha, Nebraska, area, which is less than an hour away, but town leaders worry others will move away. A few may transfer to a similar institution owned by the state in the town of Woodward, which is 150 miles to the northeast.<\/p>\n
**\u2018Last Ones Out\u2019<\/strong><\/p>\n**
Some of the institution\u2019s residents 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.<\/p>\n
His mother, Sybil Finken, lives in the town of Glenwood and sees few options for her son in the region. The most advanced care programs she has talked to are in bigger cities, such as Des Moines or Dubuque. \u201cThis is Seth\u2019s community,\u201d she said. \u201cI don\u2019t want him moving two or four hours away.\u201d<\/p>\n
For years, Sybil Finken called for Iowa to keep operating the Glenwood Resource Center. She knew most other states had closed institutions for people with disabilities. She figured Iowa would follow suit eventually, but she believed assurances that longtime residents could live out their lives there.<\/p>\n
**Now, she said, all she can do is keep talking to private care agencies and hope someone figures out how to keep her son safe in a community setting.<\/p>\n**
**\u201cSeth and I are going to be the last ones out the door,\u201d she said.<\/p>\n**
**$\"A$** Seth Finken (left) with his mother, Sybil Finken. Seth has lived at the Glenwood Resource Center since 1984.(Des Moines Register)<\/span><\/figcaption><\/figure>\n
\n
\n\t\t\t\t\t\t\t\t\t\t\tTony Leys: <\/span>
\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t tleys@kff.org<\/a>,\t\t\t\t\t\t\t\t\t\t\t
\n\t\t\t\t\t\t\t@tonyleys<\/a>\n\t\t\t\t\t\t\t\t\t<\/p>\n<\/aside>\n
\n
\n
\n\t\t\t\tRelated Topics\t\t\t<\/h3>\n
\t\t\t\t
\n\t\t\tContact Us\t\t<\/a>
\n\t\t
\n\t\t\tSubmit a Story Tip\t\t<\/a>\n\t<\/div>\n<\/section><\/div>\n