Illinois’ disabled: We want out of nursing homes now
by Patty Hastings
Illinois advocates and people with disabilities made their message loud and clear at Friday’s town hall meeting at the University of Illinois-Chicago. The state is failing to place people with disabilities in independent living arrangements that serve their needs better than nursing homes.
Advocates argue that Illinois spends a disproportionate amount of Medicaid expenditures on long-term nursing home care instead of spending funds on personal care assistance in an individual’s own home or community living arrangements.
Illinois currently spends nearly $4 billion in providing Medicaid long-term care. Just over 70 percent of funds go to institutions, about 15 percent above the national average, and just under 30 percent go to community living, about 15 percent below the national average.
“For a lower cost we can provide a higher quality of life,” said Francisco Alvarado, from the Division of Rehabilitative Services at the Illinois Department of Human Services.
Community living for an individual with disabilities costs $18,600 per year while the Department of Health and Family services estimates it costs $43,000 per year for care in a nursing home.
Individuals typically enter nursing homes because they have a debilitating disability that requires care, but they live on a fixed income. Even though they may be independent and recover so they don’t need nursing home services, they’re stuck.
The federal court ruled in 1998 that people can’t be institutionalized against their will. But it’s up to the state government to make “reasonable accommodations,” according to the Americans with Disabilities Act.
For Illinois, housing vouchers help transition individuals out of nursing homes by subsidizing rental costs for low-income individuals. Getting a voucher, however, can take five to eight years because of the wait list. There are 36,000 vouchers in use and 35,000 additional people on waiting lists for them. Others don’t even make the wait list: in 2008, 250,000 people applied for vouchers, according to Chicago Housing Authority.
John Rivera, 55, broke his hip seven years ago and went to a shelter after losing his home. He was, however, recommended to a nursing home and has been at the Oak Park Health Care Center ever since.
Rivera can take care of himself, but he can’t afford to leave the nursing home, he said. He spoke at the town hall meeting, sponsored by UIC students majoring in disability studies or occupational therapy.
“If I do get out I don’t know where I’m going to go. No family,” Rivera said.
Medicaid is paying for Rivera to stay at the nursing home even though it costs more than if he lived independently in the community, he said. Illinois’ Money Follows, a community reintegration program under Medicaid, will support him — no matter what his living arrangements are. It would pay for a nurse to come to his home and provide care.
Gov. Pat Quinn’s proposed budget cuts funding for Money Follows by 50 percent.
“The disabled want to be in their own homes,” said Janie Megias, Ph.D. candidate in UIC disability studies program. “Transitioning into the community would be impossible on their fixed income without the voucher.”
While housing vouchers are hard to come by, Chicago-based programs Progress Center and Access Living provide transitional services such as paying for the first month’s rent and groceries.
Section 8 is a federal subsidy program offered through the U.S. Department of Housing and Urban Development that means a household will pay 30 percent of their income toward rent, with the federal government pays for the rest of the rent.
University of Illinois students documented individuals at the Progress Center who are aiming to get out of nursing facilities. They want to persuade policy makers with their film footage to seriously consider this vulnerable population.
Access Living will lobby the state legislature May 4, 11 and 16 to speak out about the need for home and community care services.
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