By Carla K. Johnson
AP Medical Writer
CHICAGO (AP) — Gilbert Parham is eager to move out of the nursing home where he’s lived for nearly a decade, find a place of his own and get a job, confident he can manage his medications for schizophrenia and live independently if he gets some help.
Bruce Allen fears his mentally ill nephew, Christopher, can’t survive outside of an institution.
Allen and Parham were among those planning to appear before a judge who’ll decide whether to approve a proposed settlement in a federal class-action lawsuit that would give thousands of mentally ill state aid recipients a chance to move out of large institutions.
The agreement would settle claims that Illinois violates the civil rights of mentally ill people by needlessly segregating them in facilities where they are forced to live with dozens, often hundreds, of others with mental illness. It was hailed as a landmark by advocates.
“To take a person’s freedom is almost like taking their life,” said Parham, 52, who lives in a small room at Columbus Manor, a Chicago nursing home, and who was a plaintiff in the suit.
Although residents would not have to move if they didn’t want to, Allen, 73, is worried that nursing homes might close for lack of residents. His 50-year-old nephew lives at Abbott House, a Highland Park nursing home, and “wouldn’t be alive today if he didn’t live there,” Allen said.
“It would be a slow, painful, terribly crushing way to die. ‘Failure to thrive’ would be dressing it up in nice language,” Allen said.
The agreement sets a timetable for helping residents move to apartments and small homes, a process to be overseen by a court-appointed monitor, and would force the state to provide them support services, such as help learning to cook, shop and manage their medications.
Benjamin Wolf, an attorney with the American Civil Liberties Union of Illinois, which filed the lawsuit in 2005 with other groups, said he believes “the vast majority of people” will choose to move.
“But anybody who doesn’t want to move, that’s fine with us. We’re not telling anybody to move. We’re not ordering any place closed,” he said. “The future of the institutions will be based on the choice of the residents.”
Even so, expanding choice for some may eliminate choice for others if the IMDs, or “institutions for mental disease,” can’t survive without enough residents, said William Choslovsky, an attorney representing 31 objectors, including residents, family members and guardians.
“The entire issue is framed as only a civil rights issue and missing from the discussion is that this is also a medical issue,” Choslovsky said.
Some mentally ill residents have written moving letters to U.S. District Judge William Hart, saying they want to live on their own in apartments.
“I will stay on my meds, get along with the public, get a part-time job,” wrote one man. “I want to get out of here so bad,” wrote another resident. “I know how to cook, how to clean, how to wash, grocery shopping,” another wrote.
More than any other state, Illinois has relied on nursing homes to house the mentally ill after shutting down state mental hospitals in the 1970s and 1980s. Expert witnesses, hired by the plaintiff’s attorneys, plan to tell the court that Illinois’ reliance on IMDs is outdated and lags behind the rest of the nation.
Illinois’ practice of supporting the IMDs, which are licensed as nursing homes, and underfunding housing alternatives violates the Americans with Disabilities Act, according to the lawsuit. Illinois officials deny violating federal laws, but agreed to the plan.
It’s unclear how the state would pay, and IMD owners believe residents deserve to know that and other details not spelled out in the plan, their owners’ attorney wrote in a court brief. The mentally ill, they said, are not simply a minority group; they are ill and need therapy, treatment and medication.
“Other protected minorities do not have disabilities rendering many of them unable to exercise informed consent or logical judgment,” attorney Robert Neiman wrote in the brief. Neiman declined to be interviewed for this story.
Wolf said the state will save money if the settlement is approved, and the cost of evaluating residents to see if they can leave institutional care will be a few hundred dollars per resident.
Illinois taxpayers already spend more than $122 million a year to care for the mentally ill in IMDs. The federal government won’t contribute Medicaid money to such facilities so the full financial weight falls on Illinois.
Under the agreement, the state would help 256 residents move into community housing by the end of one year. By the end of two years, another 384 residents would get help moving.
After five years, all the residents who can and want to live independently would be offered supportive housing or other community-based living arrangements. The state would be obligated to provide enough units to fill the needs of close to 4,500 people with mental illness.
Illinois has 25 IMDs, all privately owned and for profit, most in Chicago but also in Decatur and Peoria. Expert witness Elizabeth Jones, a former psychiatric hospital director, has visited all the Illinois institutions and found them backward in their approach to mental illness.
“Everything about them detracts from what we know to be effective in the field now,” Jones said. “This settlement calls for supportive services. It does not call for people to be abandoned and left alone.”
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