Any state can use its Medicaid money for in-home services instead of nursing homes, says Mike Oxford, an ADAPT organizer and head of Topeka's independent living center.
States can choose the "personal care option" for their state Medicaid plan. Laws don't need changing. But virtually no state does this. Why not? The nursing home lobby, the American Health Care Association, has promoted its facilities with cries of "quality of care" and horror stories about the worker hired out of the newspaper who robs and abuses the vulnerable patient in her home. So nursing home placement has become standard operating procedure. Now it's taking a gargantuan effort to shift things.
Despite the marketing, no one likes the idea of living in a nursing home. People want to be in charge of their own lives, in their own homes.
Since 1990, ADAPT -- whose acronym stands for American Disabled for Attendant Programs Today -- has been working to change the nation's understanding of attendant services in the home, and pushing the government to offer a national program of in-home help that, they believe, will replace the nursing home's stranglehold on how you have to live when you acquire a serious disability.
ADAPT insists state should use Medicaid to pay for in-home attendants routinely, as a first option, working to make sure you stayed in your home, rather than routinely using the money for a nursing home, as is done now. When states operate under the "nursing home option," nursing homes gobble up most of the Medicaid dollars. States have only a tiny bit left over to use for in- home services.
One reason states don't choose the personal care option, says Oxford, is because if they choose it then they can't put any restrictions on it: Anybody in the state who's eligible for Medicaid can use it; the state can't decide it can be used only for people "at risk of institutionalization" or people in a certain location in the state, or just elderly people, or just people with brain injuries -- it can't then tell a person they can use an attendant only for 4 hours a week, or 6 hours . . .
Instead of exercising the personal care option, states use "waivers."
Since the 1980s, states have been able to pick and choose things to do with Medicaid funds under what are called "waivers." -- many use waivers for tiny efforts at in-home services.
They're called ""waivers" because they waive one or more federal Medicaid rules. A state can get a waiver so it can waive the federal requirement that the program be statewide, for example. Or the state can use a waiver restrict who's eligible for an in-home program -- it can restrict the program to "people with developmental disabilities" or "people over age 65" or "people who need 20 hours or more of care per week." States do this when they apply for waivers because they want to make the program small, so it doesn't take too much money.
ADAPT, arguing civil rights, says "it's not fair for people to be either free in the community or enslaved in a nursing home -- based simply on what state they live in," says Oxford.
ADAPT lawyer Steven Gold used the Americans with Disabilities Act to sue for this, and plans on doing it again.
"People don't see the Helen L. case as the tool it is," says Oxford. "It's an important tool that's being overlooked."
The Helen L. case involved plaintiffs who were in nursing homes and wanted to get out. The court ruled that they were being "unnecessarily segregated" in nursing homes, in violation of the ADA, and ordered the Pennsylvania to pay for services in their homes. The same argument that won the case in Pennsylvania can be used all over the U.S., insists Gold. Gold is frustrated that the disability community isn't doing it. He'll help them -- but they have to get an attorney in their state to file a lawsuit.
Why don't more states use the Helen L. case to force state Medicaid departments to use their money for in-home services? "That's a real good question that I'd like the answer to myself," says Oxford. ADAPT is adamant that any national program changes must include the option of the disabled person managing their own attendant to the extent that they desire.
In Mike Oxford's state, Kansas, consumer control is required by state law. More next time.
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