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
How Kansas
got 'consumer
control' into
the law

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.

Starting with attendants Oxford calls attendant services "a discrete part" of "personal assistance services. Personal assistance services include readers, interpreters, notetakers too. In the disability rights movement, the term "attendant" means someone who helps get you in and out of bed, get dressed, transfer, use the bathroom and things like that. ADAPT, he said, has focused on attendant services "as a starting point" because there's a relationship between having an attendant and being able to live where you want and not being forced into a nursing home.

One type of law is called a "nurse practices" act. Professional nursing associations saw to it that these laws were passed; most came about during the 1980s. "Nurse practices" laws spell out those "nursing" duties which must be performed strictly by a registered nurse.

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.

$40 billion tied up in nursing homes "The problem is that the dollars are tied up in the institutional programs. As you know, all states which receive Medicaid funding (in other words, all states) are mandated to provide nursing home services. Right now all 50 states can, in addition, choose to provide one or more of a variety of community-based services. They do not provide these services because . . . their long-term care dollars are tied up in the required nursing home services . . . "This legislation needs to allow states to move money from the nursing home line item to the CASA line item for those individuals living in nursing homes and other institutions so they can, if they want, choose to live in the community. "Two billion dollars over six years does not compare to the almost $40 billion Congress spends in one year on nursing homes . . ." From May 21 letter to Speaker Newt Gingrich from ADAPT leadership

"It's humiliating when you're a grown man to have some nurse in there telling an aide how to do my bowel program, when I know better than anyone how it's supposed to be done," one quad told us recently. "It's not the bowel stuff that's humiliating; it's having someone else come in and treat you like you oughta be in a hospital."

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."

Having a choice "Consumer control" is the term the disability rights movement uses. It means that you, the "consumer," control your own attendant services. You get to hire, fire, train, manage and schedule your attendant. You get to decide when they come, when they leave. You get to tell them how you want things done in your home. You manage your own attendants. Now, as it turns out, a lot of disabled people would rather not do all of those things. It's particularly rough having to put an ad in the paper, interview a bunch of applicants, then have to check their references and try to figure out if any of them have past histories of abuse, or stealing from their bosses. A lot of disabled people would be relieved to be able to get an attendant from a home health agency that they feel has already checked out the aide they sent -- or at least will have to assume responsibility if the aide steals from them, and will have to replace the attendant immediately if one fails to show up. Still, most of us want some say-so in who ends up working with us to take care of personal needs. Most disabled people we talked to said they especially want to be able to tell the attendant what needs doing, and when. They want to be the one to decide when they'll go to bed and get up. Nobody wants to be in a position where the attendant -- often a nurse's aide from a home health agency -- tells them what they are supposed to eat or when they can go out. In some states, disabled people can choose to handle some of the tasks of managing an attendant, even if other tasks remain under the control of a nurse. Some people don't mind this; some even like it. Other disabled people want to take complete charge of everything. The solution, say advocates, is to have the ability to choose to control what you want to control. If you want all the decisions about your care to be done by a home health agency, then you should be able to have that. If, on the other hand, you want to be in charge of all of it, you should have that right as well. People should be able to pick from a menu of choices, say advocates.

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.