Electric EDGE
Web Edition of The Ragged Edge
May/June 1997
Electric Edge

Blank space
You need help getting in and out of bed. You can't use the bathroom by yourself anymore. Once you're in your wheelchair, you can get around -- but you need help fixing meals.

For too many people who find themselves in this situation, the solution offered is the nursing home. It's an almost-automatic assumption: if you need help, you are better off in a nursing home.

Removing the nursing home stranglehold.
Anybody on Medicaid can get into a nursing home, no matter what state you live in. But it's a fight to get personal care service at home.

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.

Get 'em out!

"If anyone is in a nursing home and doesn't want to be there, it's our fault they're in there," Says Attorney Steve Gold, whose successful lawsuit using the Americans with Disabilities Act got people out of nursing homes in Pennsylvania.

"We should give independent living centers money based on the number of people they get out of nursing homes," he says. "That'd give them an incentive."

Gold will talk to attorneys about his winning suit so other cases can be filed. He and secretary Kathy Pierce can be reached at 215/627-7100.

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.

ADAPT heads for
Nation's Capitol

ADAPT is revving up for two action-packed weeks of demonstrations in Washington, D. C. to push for passage of a national attendant services bill, which sources say is close to being introduced in Congress. Dates are either June 14-19 or June 21-26; a final decision hadn't been made by press time.

Call Denver ADAPT at 303/333-6698 (email: adapt@csd.net) to get the final dates and reserve rooms ($115 per night).


Write to The Ragged Edge

Back to cover page
Table of Contents
Copyright 1996 The Ragged Edge

This Website produced by Cliffwood Organic Works