In 1990, shortly after the Americans with Disabilities Act became law,
ADAPT began a new campaign. ADAPT activists swore to get Medicaid to
quit pouring the bulk of its money into nursing homes. ADAPT wanted
the money to go to pay for in-home attendant services.
The American Health Care Association, the nursing-home lobby, had been instrumental in seeing that Medicaid funds went to nursing homes. So ADAPT took on the lobbying group, AHCA, and has been disrupting AHCA conventions ever since, doing their street-style confrontations and calling attention to the bloated bureaucrats who work to make sure nursing homes have lots of money.
In June, while this magazine is on its way to you in the mail, ADAPT activists will be in Washington, D.C., putting pressure on Rep. Newt Gingrich (see page 6) . Nearly 2 years ago, Gingrich promised activists to introduce a bill to set up a national attendant service program.
But even though no federal law is yet in place, out, you can change things in your state. Kansas did.
Removing the nursing home stranglehold, Part 2
ADAPT activist Mike Oxford, who heads Topeka, Kansas's independent living center, points out that all states have laws that govern how in- home services are provided -- and who does the providing. To have meaningful in-home services, these laws usually have to be changed, to guarantee that the disabled person who need an attendant has some say-so.
Other state laws and rules govern licensing and certification of home health aides.
All these laws and rules need to be looked at -- and usually changed, says Mike Oxford -- to ensure disabled people of being able to control the attendant services they get.
For example, many disabled people who use catheters know perfectly well what is involved in changing a catheter. They are perfectly capable of explaining that to their own attendant and overseeing the procedure, making sure their attendant does it the right way.
But some states have laws that say that any catheterization can only be done under the supervision of a registered nurse. If that's the case, that means you cannot have just anyonechange your catheter. A nurse has to do it, or has to be present or "oversee" the person doing it -- a home- health aide, for example.
The main effect this has, say advocates who have dealt with these things, is to keep the cost of an attendant high. If your "care" has to be overseen by a registered nurse, a "professional," the hourly cost skyrockets. If you hire a college student to do the same thing part time (maybe in exchange for an apartment in your home), you can do it for less money.
But you can't hire the college student to help you with catheterization if the state law says a registered nurse has to do it. That's why state laws often need to be changed to make sure a disabled person can be in charge of her own bodily care.
ADAPT is insisting that any national-attendant service program that gets set up must permit the disabled person to manage their own attendant, if that is what they want.
In Mike Oxford's state, Kansas, consumer control is required by state law, thanks to changes in the state's nurse practices act and in licensing regulations that the Kansas disability community pushed through the state legislature several years ago.
Oxford describes the procedure they followed and says others can do the same thing in their states.
First, Oxford looked up the Kansas laws and rules governing licensing and certification for nurses, home health aides and other providers of such services. All states have such laws. They're called "nurse practices" acts. There are also regulations for licensing and certifying practical nurses and home health aides.
The laws and regulations are often vague -- intentionally so, says Oxford. "They'll say 'the practice of nursing is what the nurse on duty deems it to be' and stuff like that," Oxford points out. Such laws are usually drafted by the group they protect -- the nurses' association, for example -- and they're designed to give the nurse control over what's done.
It's important for advocates to look for this vagueness, says Oxford. Figure out ways to change the laws and regulations to make sure that whoever is receiving the service -- you -- has the right to control what is being done.
Oxford researched other states' laws and talked to disabled people who used home health services to try to find out what people wanted in terms of controlling their own attendant services.
Then his group "drafted some basic language to serve as 'talking points.' "They convened a meeting of everybody they could think of who would conceivably be interested in the legislation they were going to propose. They contacted lobbyists for the insurance industry, the nursing board -- everyone they could think of who might have an interest, and invited them to a meeting to "present our research and ask for support."
Some of these groups, naturally, were opposed to what they were doing. "It was us against the nurses, the home health agencies and the state Medicaid agency," Oxford said. "They said, 'people will die,' 'you'll jeopardize our funding,' 'our entire state Medicaid budget will be cut off' " if you change our laws governing licensing. Terms like "quality-of-care" were bantered about by the opposition.
"But we kept talking," said Oxford. "We maintained the dialogue."
People started speaking out -- ordinary people. They wanted the changes. People told horror stories about how they were left in bed until late in the day because they weren't on the home health agency's schedule to get up earlier. They told of not being able to direct their own lives, of attendants telling them what to do. Of having to be in bed by 6 p.m. to suit the home health agency's schedule.
"'These things happen because we are not in control,' they said. Family members spoke up; parents who had disabled kids."
Oxford says that the effort to get those laws changed in Kansas "was when we came out as a disability community."
The law was changed in the 1989 Kansas legislative session.
Now, in Kansas, language in the laws governing personal care and "nursing" services to disabled people specify clearly that the services are to be "directed by or on behalf of the person with the disability," said Oxford.
"The nurses and the state were against it all the way, 'till the bitter end," said Oxford. "But in the years since everyone has seen the benefit of it."
"It really comes down to having the ability to tell whoever's doing the services, 'get the hell out of my house and don't come back.'"
If it can be done in Kansas, it can be done anywhere, says Oxford. Just do it!
For more information on how disabled folks in Kansas got control over their own attendant services, contact Mike Oxford at the Topeka Independent Living Resource Center, 501 SW Jackson St., Suite 100, Topeka, KS 66603. Phone 913/233-4572 V/TDD; Fax 913/233-2561.
The form below is similar to the form Kansans sign when they use the state attendant services program.
Of course even with such forms a disabled person can be forced into a nursing home. An elderly grandmother can be told she would be "better off" in a nursing home and in that way coerced to give up the right to in- home services. A person can be so beaten down psychologically that he himself believes he cannot manage outside a nursing home.
But as more of us see that we have a right to run our own lives, these abuses will hopefully lessen.
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