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Activists Work on Providing Home Care for Disabled - 2002-10-17


Two out of every five Americans will suffer a disability that forces them to spend time in a nursing home. To afford this care, many people rely on insurance programs that cover expensive a stay in a nursing facility, but do not pay for care at home, even when it's less expensive. While many people with disabilities and their loved ones welcome the security of a nursing home, a group of activists based in Colorado wants communities to allocate more funds for services that would help someone with a disability live at home.

As a 29-year-old truck driver, Mike McCarty was confident that he would always be independent. But a sudden illness changed everything. "It all started in march of '94 when I got sick with neurosarcoid," he said.

Neurosarcoid is a rare disease that left Mr. McCarty virtually paralyzed. For the next four years, as he slowly recovered enough movement in his arms to use a wheelchair, Medicaid, the federal government's health insurance program, paid for his nursing home care. But Mr. McCarty says he was not encouraged to become more independent, and the government continued to pay his nursing home costs. It was not until three years later that he finally discovered a local agency that was eager to help him live a more normal life. "They did all the paperwork and got the waiver to get me out of the nursing home to get into here," said Mike McCarty.

Last spring, Mike McCarty moved into an efficiency apartment. "Here I am doing my own dishes. Oh, man, " he sighed.

As he sits in his wheelchair, scrubbing scrambled eggs from a cooking pan, Mr. McCarty says that doing chores in his own home is better than doing nothing in a nursing home, where someone else did all the cooking and cleaning. "I have to lift stuff, and the dishes, I just have to keep my hands up here, and the dexterity of my hands has improved, and I don't have the stiffness in my hands that I had in the nursing home," he said. "Cleaning up after myself has improved my wellbeing."

Under a special program available in many states, Mr. McCarty has been allowed to use Medicaid and other government funds to pay for services that help him live on his own, such as a weekly cleaning service and coaching on independent living skills. "The nursing home, I think they pay like $37,000 a year for a person to stay in a nursing home, and I think it's only $15,000 a year to stay here," said Mike McCarty.

For many people with disabilities, moving out of a nursing home is a cost effective choice. But a large number remain in institutional settings because their insurance plan won't pay for any other option. "We're often looked upon as a group that can be easily ignored," said Julie Redenbaugh-Aird.

Julie Redenbaugh-Aird has a masters degree in rehabilitation counseling and is on the staff of the Boulder Center for People with Disabilities, the agency that helped Mr. McCarty transition back into his community. Ms. Redenbaugh-Aird has cerebral palsy, which affects her muscle control, so she uses a walker to get around. The condition also affects her speech. She's well aware that many people shy away from someone with a disability. "I've been treated as a victim of pity, and that's why I'm so adamant about equal rights," she said.

Ms. Redenbaugh-Aird believes moving people with disabilities into a neighborhood enriches it. A 1999 Supreme Court ruling known as the Olmstead Decision supports her opinion. It states that government programs which provide preferential funding for nursing homes are a form of segregation. Currently, 40 states and the District of Columbia have plans to develop more community based living programs for the disabled.

But Ms. Redenbaugh-Aird believes there's too much talk in these plans and too little action, so she is part of ADAPT, a Denver-based advocacy group dedicated to action. ADAPT members use picketing, chanting, and civil disobedience to gain attention and raise awareness of their cause. They say the sight of police dragging people with walkers, wheelchairs and white canes off to jail can jolt the public into hearing the civil rights issues they want addressed.

Recently we protested in front of the health and human services building in Denver.

This summer, "ADAPTors" spent 14 days camping out at Denver's Health and Human Services building, to challenge budget cuts that eliminated attendant services for the disabled. These aides provide a few hours of assistance in dressing, fixing meals, and other activities that help the disabled live independently. Persuaded by the protests, Colorado reinstated the funding. This month, 500 ADAPTors took part in a similar action in Louisiana, where they say 93 cents of every Medicaid dollar for long term care goes to nursing homes, despite a growing demand for home and community-based services.

Back in his own apartment, Mike McCarty says he's glad to be out of the nursing home. "I can sweep my floor now, I can mop my own floor now," he said. "Keep the counters clean. So much better. It's 'aaggh! I'm free!' "

Meanwhile, Ms. Redenbaugh-Aird and other ADAPTors are pushing for national legislation that would allow more Americans with disabilities to enjoy the same freedom of affordable home-based care.

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