Amid its recurring budget crisis, the State of Illinois has yet to comply with a ten-year-old Supreme Court ruling that would save money by giving nursing home residents the choice of moving out and obtaining less expensive community services.
And projected budget cuts could increase the cost of noncompliance.
Disability rights advocates will gather Monday (June 22, 11:00 a.m., State of Illinois Building, 100 W. Randolph) to celebrate the tenth anniversary of the U.S. Supreme Court’s decision in Olmstead v. L.C., which found that denying people with disabilities alternatives to institutional care violates the Americans with Disabilities Act.
Ten years later, Illinois’ method of allocating long-term Medicaid funds — heavily weighted toward nursing homes — forces people who want to live with their families and friends into institutional settings, because community-based services are chronically unavailable, said Gary Arnold of Access Living.
And there’s imminent danger that it could get worse — Illinois “could move backwards on Olmstead if the current budget is implemented,” he said. Cuts in funding for home services — providing the personal assistants who allow people to living independently — could force more people into nursing homes.
Since home services are far cheaper than nursing home care — costing half as much or less, by one estimate; saving as much as $36,000 a year per individual, by another — the state’s failure to comply only adds to its fiscal problems. It reflects the political connections and large campaign contributions of the state’s nursing home lobby, advocates say.
In recent years, efforts in the state legislature to bring Illinois’s funding system for long-term care into compliance have been blocked, and the state has fought lawsuits charging it with violating Olmstead (though a settlement in one case is pending judicial approval).
After disability activists pressured the state to participate in a federal grant program to encourage deinstitutionalization, a maze of state agencies took so long working out departmental perogatives and budgets — and created such a complex bureacratic process — that after three years, only one person has been moved out of an institutions, said Tom Wilson of Access Living.
In the past twelve months, Access Living has helped three dozen people move out of nursing homes and into community settings, he said.
Along with Access Living and the ACLU, Equip for Equality has filed three class action lawsuits charging Illinois with violating Olmstead. In Ligas v. Maram, filed on behalf of 6,000 people with developmental disabilities who now live in large private facilities, a settlement has been reached and is set to be ruled on next month, said Barry Taylor of Equip for Equality. The settlement would require annual independent reviews for all residents of such facilities, and establish a timetable for moving those who so choose into community settings, he said.
Similar settlements in two similar suits — one on behalf of 5,000 people with mental illness living in private institutions and one for 30,000 people with disabilities in nursing homes — would “move us along very far toward compliance,” Taylor said. He notes that the state is still litigating those suits, as it did with Ligas up to the trial date last year. But there’s also been a change of administration since then, he adds.
Roonie Bradford, who’ll join Taylor at the speaker’s podium Monday, just got out of a nursing home in September, thanks to Access Living’s deinstitutionalization program. He ended up there without intending to: after a landlord took his rent but didn’t pay his water bill, Bradford went to the police station, the city’s Department of Aging was called, and he found himself spending several months in a series of homes.
He tells of weekend passes being arbitrarily revoked, and nurses refusing to give him pain medication for severe arthritis according to his prescription. Now 59, he’s used a wheelchair for years, since being seriously injured in a fall while working as a window washer.
In one nursing home a staff member put him in touch with Access Living. In the next, the business office demanded he sign his diability check over to them. “They were already getting $4,500 from the state for me,” he said. “They told me I owed them another $1,300.” He called a friend who took him out to lunch, and he never returned. Within days Access Living’s program workers had approved an apartment for him and provided a security deposit and first month’s rent check, along with furniture and kitchenware.
“It feels like I broke out of jail,” said Bradford. “I’m independent. I can sit in my yard when I want to.”
The nursing homes “don’t want to let you go because they want that money they get from the state,” he said.
“Now I visit everyone I know in nursing home and bring them folders with information on how to get out. They won’t let me into the wards because they know I’m with Access Living, but they let me go in the dining room.
“I want to help as many people as I can to get out. Because it’s not a nice place to live.”