To read on The Des Moines Register website:
‘Stubborn’ Iowa hangs on to state institutions for disabled people
GLENWOOD, Ia. — Sybil Finken knows that if Iowa had followed the lead of many other states, her son’s longtime home would be closed by now.
Seth Finken, who was profoundly disabled by a childhood brain infection, has lived in the Glenwood Resource Center since 1984. He is cared for by aides who’ve known him for years, his mother said. They keep him safe, take him on outings and provide him with a comforting routine.
Many other states have closed at least some of their institutions for people with intellectual disabilities. Those states are responding to a belief that people with disabilities live more fulfilling lives in small group homes or apartments knitted into their home communities.
Advocates for the rights of people with disabilities say Iowa should be moving more aggressively to empty the Glenwood institution and a similar facility in Woodward. They say only Arkansas relies more heavily on such facilities for people with intellectual disabilities, which used to be known as mental retardation
“We think the front door should be closed,” said Jane Hudson, executive director of the watchdog group Disability Rights Iowa.
Across the country, nearly two-thirds of such state institutions have closed since 1960 or are scheduled to close soon.
Iowa has steadily trimmed the number of people living at the two state institutions. The populations there have dropped by nearly half in the past 15 years. But state leaders say they have no plans to close either facility.
“Iowa’s stubborn, and I’m grateful that Iowa’s stubborn,” Sybil Finken said. “Some people might think it’s backward, but it’s a sensible approach.”
The two institutions are home to about 370 Iowans with intellectual disabilities, who live in dozens of ranch-style houses. Many have conditions such as autism or Down syndrome, along with serious behavioral problems or physical ailments.
Hudson said the institutions represent an outdated way of handling such residents. With proper support, almost all people with intellectual disabilities could live in their communities, routinely interacting with the rest of society, she said: “They don’t need to be in an isolated facility, far from home.”
Hudson doesn’t believe the two state institutions should be immediately shuttered, but she thinks the state should be working more diligently to find alternatives for residents.
The Glenwood institution was dragged back into the spotlight in January, with news that 13 workers had been fired or resigned over allegations that they humiliated or struck residents. Finken’s son was not among the residents who were mistreated. But she was outraged by the allegations, and she was glad to see criminal charges filed recently against six former staff members. Still, she thinks most of the facility’s 770 workers are dedicated, caring professionals. She hopes no one tries to use the scandal as an excuse to close the place.
Finken sat next to her son as she discussed the situation on a recent afternoon. Seth Finken, 37, was born healthy, but he developed severe meningitis as a baby. The infection ravaged his brain, leaving him totally blind and deaf. He also is intellectually disabled. He can’t walk, talk or feed himself. As his mother spoke about his life in the institution, Seth Finken suffered two seizures, causing him to tremble and grimace. An aide leaned over his wheelchair and used a magnet to adjust an electronic implant that dampens the storms in his nervous system.
Sybil Finken said she’s glad that many people with disabilities now live in small settings instead of in institutions. “But not everyone can best be served in the community,” she said. “People with children as profoundly disabled as my son worry that they’d be parked in a corner if they were out in the community.”
Finken noted that decades ago, activists started pushing for people with mental illnesses, such as schizophrenia, to be moved out of state mental hospitals and into community placements. Many mental hospitals closed or shrank, but society didn’t provide enough alternative services for the institutions’ former residents, many of whom wound up homeless. Finken doesn’t want the same thing to happen to people with intellectual disabilities.
Richard Crouch’s son, Gary, also is a longtime resident of the Glenwood institution. Gary Crouch, 46, has a severe form of autism that was sparked by a seizure disorder. He can speak a bit and do things such as play Nintendo games. But his family said he needs constant oversight. They said he has done well at Glenwood, where he is in a familiar routine and is often taken out on group activities.
Richard Crouch, who leads a parents’ group at the facility, said staff members do what they can to create a peaceful life for Iowans with profound disabilities. The families don’t want to feel pressured to have their loved ones moved elsewhere.
Crouch said many residents’ families became concerned in 2015, when Gov. Terry Branstad abruptly ordered the closure of state mental hospitals in Clarinda and Mount Pleasant. They worried that Branstad would also shutter the Glenwood and Woodward institutions for people with intellectual disabilities. “That’s been my greatest fear for 30 years — that this place would close, and where would people like this go?” Crouch said.
A national expert said Iowa has moved more slowly than most other states in shedding its reliance on such institutions.