"Without amending the Missouri Nurse Practice Act," says DeMian, "our waiver will not produce the cost savings" required by the federal government "and it won't be able to serve a large number of people."
Disability activists in Kansas amended their nurse practice act in 1989 to allow delegation of what's termed "nursing-related tasks." Last year Kansas Medicaid saw a savings of $52 million as a result of using a home- and community-based Medicaid waiver to provide "consumer-controlled" attendant services to disabled people, including those who use ventilators--that group of disabled people whose "nursing care" is always touted as being so extremely costly. (See "Removing the nursing home stranglehold," in the May/June 1997 Ragged Edge, and "How Kansas got 'consumer control' into the law" in the July/August 1997 Ragged Edge.)
"When a nurse delegates to an attendant or an aide, she retains the responsibility," is how Pat Puckett explained it. Puckett, head of the Statewide Independent Living Council in Georgia, formerly managed Creative Pathways, a firm which helped disabled Georgians find attendants, among other things.
Georgia's nurse practice act had always been interpreted to allow delegation, and "things were never a problem," said Puckett. But a few months ago, an overzealous home care provider kept pestering the state nursing board for a "ruling" on whether "unlicensed personnel" could perform certain tasks. Better not to ask, Georgia advocates had been advising. But he kept asking, said Puckett. Late last fall he got an official interpretation from the state nursing board: no, those things could not be done by anyone other than a nurse.
Puckett said that in the past attendants had been allowed to do things like "catheter care, vent care, suctioning." But now that the board has issued its ruling, says Puckett, advocates are debating whether they will now "have to re-open the Act for amendment."
Georgia's current nurse practice act is "a pretty good one," says Puckett. "It talks about teaching and training people to perform routine duties--'delegation,'" explains Puckett.
Many groups just want the Georgia nursing board to "rescind its statement"--including the state hospital association and state nursing home interests.
"It feels really odd to be on the same side as the nursing home industry on an issue," says Puckett, a longtime disability activist. Politics makes strange bedfellows: although it's for reasons at odds with disability activism, hospitals and nursing homes also don't want to have to pay nurses if they can get by with cheaper non-medical staff.
There's "delegation," and then there's "assignment," explains Puckett. "Assignment" means that responsibility is simply "assigned" to the person with the disability--and the nurse is removed from it entirely. "Assignment" is better.
In 1992, the Nebraska legislature, partly in response to testimony by Tim Kolb, amended its nurse practice act to state that "competent adults" had "the authority to direct their own care." The law now states that the Nebraska nurse practice act "does not prohibit the performance of health maintenance activities by a designated care giver for a competent individual at the direction of that individual." The change defined those "activities" as things "which the individual would perform for himself or herself if he or she were physically able . . ."
"The cost for community-based services will remain high if we simply have 'delegation,' because the nurse will still have to oversee and train the attendant," says Puckett. And get paid for it, at their professional fee level.
In Washington, discussions with the state nursing board over a change in law has been, in Olson's words, "a long, drawn-out process." He sounds exhausted just thinking about it. "The people who are having these medical activities done to them--the persons with the disabilities--are left out of the discussion altogether, as if they didn't exist, as if they were non-entities," he said. "It's all been about the nurses--what they could do; what they could allow" to be done by someone else.
He continued, "There was a long discussion at one meeting as to whether putting a pill in someone's hand should be allowed, as opposed to putting it in a cup." He sighed. "I kept telling them, 'it's the wrong person doing the 'delegation' here,'" he said.
Under Washington state's current nurse practice law, "it's illegal to use your own judgment and rent a pair of hands," as Olson put it.
"If you can tell someone, 'pick up that blue pill--not that light blue one, but the long blue capsule--and put it in my mouth'--if you're competent to do that, but you can't put the pill in your mouth by yourself, then you're not allowed to have just anyone working for you do it." It has to be a nurse.
"The way things have played out here," Olson said, "is you can pay someone--a nurse--a lot of money to make a judgment, but it has to be a nurse. If you can't use your own hands, then you're not allowed to use your own judgment to direct someone to give you a pill. Olson talks of a man with multiple sclerosis who has resorted to licking his medication off a table where it's left by an attendant, since he's been warned that his attendant can't legally "give" him the medicine. This man's situation isn't unique, says Olson. He calls it "ritual humiliation because of a silly rule."
"You get into some situations where people who need to take medication, but who can't actually do it with their own hands, are having to move into nursing homes because it's too expensive to have a nurse come out to your house six times a day and put that pill in your mouth."
What amazes Olson about the bureaucrats who have been behind such laws "is the lack of consideration for the impact these laws have on people." Olson calls what has happened to disabled people's autonomy and ability to live in their own homes as a result of nurse practice acts an "unintended consequence" and says that this impact "was never any part of the discussion" when nurse practice acts were being put in place all over the nation in recent years.
The "unintended consequence" of nurse practice acts is an example of two countervailing trends today: the medicalization and stratification of routine care as a result of nurse practice acts and similar moves by other professional groups with an eye to keeping a corner on a lucrative market funded by health benefits, public or private; and the move by a vast array of companies to market all manner of self-diagnostic and self-care devices and procedures.
While advocates for attendant services have been battling the first trend, DREDF's route to the issue involved the latter. DREDF has filed lawsuits on behalf of children with chronic health conditions who were being barred from day-care programs because the programs would have had to administer a "medical" procedure that the children, were they but a few years older, could do for themselves: administering a blood glucose test, for example. DREDF's initial case in this area, against the Kinder Care preschool program in Columbus, Ohio, involved a child who needed the test performed before eating--but was too young to administer it herself. Kinder Care said it was a medical procedure and they weren't allowed to perform medical procedures, said DREDF directing attorney Arlene Mayerson.
DREDF took them to court under the ADA. The case was settled--but in California that settlement couldn't be implemented: the California Medical Board said such tests couldn't be performed on another person by "non-medical personnel."
It never occurred to anyone that the issue over using a home blood-glucose test would arise: the tests were designed to be "self-administered" and it seemingly never occurred to anyone writing such a law that there might be cases when such tests could not be "self-administered." Young children and competent adults who couldn't do the physical tasks were two groups never given a moment's thought when such laws were put in place.
"All these things are called 'medical procedures,' although they're designed for home use," says Mayerson. And because they're considered "medical procedures," nurse practice acts govern who can be allowed to perform them, when it turns out the person can't "self-administer" them.
In a subsequent California class-action case, DREDF claimed in court that having laws define certain procedures as "medical"--and then prohibiting non-medical personnel from performing those procedures for children too young to do it for themselves--was "tantamount to excluding those kids from daycare," said Mayerson.
This case was settled as well. But because there was no court ruling, no nationwide precedent has ever been set.
Disability groups tried to work with the California state nursing board over the issue, but "it was like talking to people who aren't making any sense," said Mayerson. Nursing boards "are not being rational" about this issue, she said.
Nurse practice acts continue to keep all manner of people with various disabilities, of various ages, in thrall to the medical profession one way or another. Their existence explain why the burgeoning "retirement community" industry almost always refuses to take residents who cannot "care for themselves." "Most congregate living communities for seniors won't take you if you have 'medical needs'--this is why,"said Mayerson.
"One of the fundamental protections we have in this country is protection from government inserting itself into the private lives of its citizens without a compelling reason," says Toby Olson.
"There is no compelling reason for nurse practice acts to take away what a person does to their own body in the privacy of their own home," he says. In effect, that's what nurse practice acts have resulted in for people with serious disabilities: they are forbidden by state law to handle the kinds of self care--direct it, be in charge of it--that any nondisabled person would have.
It is on these grounds, say activists, that nurse practice acts violate Title II of the ADA. And disability attorneys think the time is ripe for a national lawsuit.
Supreme Court and "medical" services
In October, the US Supreme Court heard arguments over how much "nursing care" a school might be obligated to provide a disabled student. The case was being argued under the Individuals with Disabilities Education Act. The Cedar Rapids Community School District in Iowa insisted that what they were being asked to provide 16-year old Garret Frey was "medical" care: it was suctioning his ventilator. (Frey uses a ventilator because of a spinal cord injury.) The school said it was expensive and they shouldn't have to foot the bill for it. Frey's parents argued, through their attorney, that what Frey needed was "somebody within earshot"--not "a nurse." The school district argued that it was a "medical service" and would cost them $30,000 a year. DREDF, which filed a friend-of-the-court brief in the case, argued that Frey had "personal assistance"--not "medical"--needs.
Mary Johnson is editor of Ragged Edge.
Readers who have been forced into institutions or who have encountered other problems as a result of nurse practice acts are aksed to contact attorney Steve Gold. Gold can be reached at 215-627-7100 or by e-mail at sfgold@compuserve.com.
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