Electric EDGE
Web Edition of
The Ragged Edge
Jan/Feb 1998

Electric Edge

"If we can get the word out to the people, they'll support it. The biggest part of our campaign -- which we are not good at and don't have money for -- is we've got to get to the general public. Somehow," says Mike Oxford of ADAPT.

The choice that
nobody's heard of

reporting by Mary Johnson

Oxford is one of the disability activists behind the Medicaid Community Attendant Services Act. MiCASA (H.R. 2020) would change the federal Medicaid program to give low-income Americans for the first time an ironclad promise to provide in-home help if they become disabled, so they could avoid a nursing home. "The average person would be behind this," said Oxford, "if they knew about it."

As Ragged Edge went to press, MiCASA was in the House Commerce Committee's subcommittee on Health and the Environment. Chairman Michael Bilirakis (R.-FL) has promised to hold hearings by the end of March. The bill had 24 co-sponsors in the House -- its chief sponsor, who introduced it last summer, was Speaker of the House Newt Gingrich. Disability activists tailed Gingrich for over two years to get him to introduce the bill -- in the form they wanted.

Nobody wants to live in a nursing home." That was a favorite saying of the late Wade Blank, who led the first organized disability rights assault on nursing homes nearly 20 years ago. Some of that group of disabled people Blank sprung from a Denver-area nursing home went on to become ADAPT, a national force within today's disability rights movement that gained prominence fighting a national fight for wheelchair lifts on public buses and went on to lead the street-fighting wing of the movement that pushed the Americans with Disabilities Act through Congress in 1990 and is now behind MiCASA.

The bill would change the Medicaid law -- Title 19 of the Social Security Act -- to make in-home services a requirement in all 50 states. It would "make the money follow the person," says ADAPT's Stephanie Thomas: People on Medicaid could choose whether they wanted to be in a nursing home or stay in their own homes and have an in-home "attendant." States would by law have to honor that choice -- and pay for it.

"MiCASA is an attempt to make sense of our long-term care system," says ADAPT. "The current system was designed 30 years ago and must be reformed. Over 80 percent of public funds are spent on institutional services, when the vast majority of the older and disabled community prefers home and community-based services. MiCASA is about choice. MiCASA is about bringing our communities together. MiCASA is about keeping families together."

Working the halls of Congress is not ADAPT's biggest challenge -- disability activists know the legislative ropes pretty well. The disability movement's weakness -- and leaders know it, says Oxford -- is in drawing media attention to the issues.

"Gay rights, women's rights, civil rights -- people know those issues, said one activist. "But our agenda is essentially off the public radar screen."

MiCASA has had virtually no news coverage in its six months in Congress. Gingrich may back it; he may have introduced it -- but the man who lectures reporters on the fine points of his agenda hasn't evidently bothered to drop a word about this item to the news pack that trails his actions.

The concept that fuels MiCASA -- "choice" over one's own long-term care -- has never made a blip in the news. Reporters who write about in-home care don't know it was pioneered in the disability rights movement. Stories never deal with the issue of "choice," which the movement sometimes also calls "consumer control." The idea that it's "health" or "medical" care, which has to be provided by "health" agency "professionals" with the recipient having no say-so in the matter, is firmly entrenched in the public's mind.

Be on the receiving end of "long term care," though, and you'll find that "consumer control" is on your mind constantly -- mostly because you, the consumer, don't have any.

"My attendant was not allowed to make lunch or breakfast for my 3-year-old son, only me," says Vini Portlizine of Pennsylvania, who became disabled when her child was still a toddler and found herself on the receiving end of an aide from a "home health agency." "The aide was not allowed do his laundry -- only mine." When she complained, she said, the agency suggested she put her son in daycare.

The home health agency John Otten of Wisconsin must use won't provide overnight aides. They told Otten, a quad, that his wife should be able to help him turn him over in bed at night. The fact that his wife is herself a paraplegic, he says, doesn't seem to faze them: Rules are rules.

The Florida program Sharon Weintraub uses won't let an aide go with her anywhere "except medical appointments." Joana Weaver's Maryland program says aides can provide only "light assistance." She fears that when her disability worsens and she needs more help, "I will go into a nursing home."

"The rules don't give you much freedom at all," said Portlizine, "except the freedom to stay out of the nursing home."

"I have no more freedom than I did in a nursing home," said Otten.

ADAPT once called home health agencies "nursing homes on wheels." Pretty accurate, said respondents to our Attendant Services Survey. Home health agencies refused to send aides before 8 a.m. or after 6 p.m. (aides put clients in bed at 6 p.m. -- the end of their shift). Agency rules forbade aides helping a client outside their home, forbade them to put away groceries, forbade them to feed pets. One respondent, whose aide was forbidden to take her to the mall, was told by the agency that "those hours could be used to get someone out of bed."

"I had aides who broke the rules regularly," said one respondent. "If they'd have been caught, they'd have lost their job and I might have gotten kicked off the program."

"Most of my aides were kind and would bend the rules. Some were horrible," another wrote. "You could complain about an unsatisfactory aide," wrote another. And they would send someone else. "But you'd also be branded as a troublemaker and the agency would keep its eye on you. I know; that happened to me."

Most home health agencies (who also serve people eligible for Medicare) have recently been interpreting Medicare rules as insisting that their clients remain in their homes ("homebound," say the rules), venturing out only for doctor's appointment. The concept of in-home assistance as a way to enable people to get out and about in their communities has been turned on its head. The furor over "homebound" rules has spilled out of the pages of the disability press for the past six months. But outside our movement, few see the enormity of the problem.

In the past decade, professional home health care companies have proliferated to make profits off Medicare rules allowing in-home "medical" care. Oxford's convinced they'll support MiCASA; they'll see the money to be made from Medicaid, he says. But they already drive the in-home services agenda in most states, and consumers get little control, say our survey respondents. Activists worry that if the "home health" industry gets too involved in MiCASA, the concept of consumer controlled attendant services will be buried altogether.

The disability movement has been using the term "attendant services" for decade. But say the words "attendant services" to anyone outside the activist circle, and you'll get a blank stare.

The nation knows "attendant services" as "home health care."

That's the problem right there, say activists. Look at the two terms: Attendant services. Home health care. One calls it "services," the other "care." Many disability activists say the "health" part is there mainly to create an illusion that allows companies to get big bucks from the government.

"Most people could just call Tidy Maid -- if they had the money themselves," says California's Patrick Connolly. Connolly used to work for Ed Roberts, the guy who pretty much invented the concept of attendant services for Berkeley gimps back in the early '70s. So Connolly hews to that early ideal of an attendant as somebody you hire yourself to basically be your arms and legs, with you in the driver's seat.

"California used to give cash grants" exclusively, says Connolly. The amount of money you got depended on how many hours you needed an attendant. If you didn't work and were poor, you could get the maximum amount. People who had a job and a decent salary couldn't get anything from the program. There was a sliding scale.

For years California had the corner on attendant services -- its statewide In Home Support Services program, administered county by county, lured crips nationwide to the golden state. Then the medical model moved in.

"Back in the '70s you -- the disabled person -- were responsible for everything," says Connolly. "Gradually, the social workers took over more control -- then the caseworkers, and now today there are all these regulations" (see "California Scheming," The Disability Rag, Nov./Dec. 1993). "Now everyone wants to be a 'professional,' so they can bill at $50 an hour," said Connolly. "So consumer control went away -- and the disabled people who used to run the program are on the advisory committees."

As California goes, so goes the nation. California moved from a "consumer-controlled" independent living" model; so did attendant service programs across the country. Home health industry groups pressed state funding agencies to change their programs so disabled people could no longer directly hire attendants but were required to go through a medically-oriented, licensed agency.

Nursing associations and home health lobbying groups got licensure laws passed in most states. The average Jane in college hired by a quad as an attendant could handle her boss's catheterizations in 1984 but not in 1992 -- she wasn't "licensed" to do it. If the disabled person were paraplegic, not quadriplegic, she could do it herself with a procedure called "intermittent catheterization." But now she couldn't direct anyone else to do it for her; it wasn't allowed anymore. If she wanted public funds to pay an attendant to help with catheterization, that attendant had to come from an "agency." Sandra Frier's attendant couldn't help with catheterization, she said; the South Carolina program wouldn't permit it. She had to hire someone else, with her own money, to do that.

"The healthcare industry, no matter what qualifications it claims to have, simply does not understand the lives and ways of paraplegics who have been pushing and doing all by themselves for decades," wrote a survey respondent. Yet "they are convinced we have no idea what we are doing."

California -- and New York, which has a large Medicaid in-home program -- are exceptions. Most states harbor one or more tiny programs that provide attendants for a few hundred people at most. Some are funded through Medicaid waivers; others use state funds. Contradictions abound. California's program excludes folks with decent money; other states insist you have a job to get the state-funded attendant. Medicaid-funded programs normally require a person be Medicaid eligible (read: poor and unemployed). But programs drawing from other pots of money -- vocational rehabilitation funds are a limited source of dollars -- may make a job a requirement. Ohio's Elsie Danevich knows a man, she says, who has been on the state's waiting list for six years. Every time his name comes up, he's been turned down because he didn't have a job at the time.

These programs are generally unknown outside the circles of advocates who lobbied for them. It was not uncommon to find among survey respondents people in one state who were involved in running a small attendant services program and other respondents from that same state who wrote that "in my state there isn't really any attendant service program." Portlizine knew Pennsylvania had an in-home services program only because before her disability she'd been on the staff of the disability group who put the program in place.

Programs begun under the "independent living" model often end up with home health agencies right in the thick of things. "Attendant services programs are looked upon as suspect because people don't trust folks with disabilities to run our own lives," says Tom Connors of Connecticut. "Physicians and members of the medical establishment are considered paragons of virtue" while "people with disabilities are viewed as either incompetent to manage attendant services money or more likely to rip off the system than the typical medical or government worker."

Connors chairs the Connecticut Coalition of Citizens with Disabilities. He's had that battle in his state. "It seems like legislators -- and the public -- think that if people with disabilities are given money, they'll just misuse it. But if a physician, or nurses, runs it then it becomes an 'ethically-oriented program.'

"We know that's wrong," he continues. "President Clinton just recently stopped programs that these 'professionals' run because they were abusing the program." Connors was referring to the moratorium imposed last summer on funding new home health services after home health agency spending improprieties made nationwide headlines. "The abuse and fiscal improprieties have been on the part of home health agencies, not individuals with disabilities," says Connors. He calls the medicalization of attendant services into home health care a "juggernaut."

I was thrilled when [Pennsylvania Gov. Richard] Thornburgh passed our attendant service bill," Portilizine recalled. Under the Pennsylvania program you could either hire your own attendant or go through a home health agency. When Portlizine needed an attendant, she used an agency, thinking, as many people do, that it would be easier and less risky than having to find someone on your own. And she reasoned that using an agency would ensure there'd be backup if the regular aide didn't show up. "But my experience -- more than once -- was that they weren't able to produce a back-up," she said. Mary O'Brien, in Missouri, also learned that the agency she used couldn't get a back up when a scheduled aide called in sick. A Colorado woman told us the same story.

"Agencies are happy to take the pass-through fees, but not send competent help," said a respondent to our survey. Connally said a friend of his on IHSS had "four professionals directly involved with just his" case -- but "none of the four could help his illiterate but great attendant fill out the required time sheet for payment. What a waste of money!" Another respondent simply wrote, "Home health care management is in shambles."

Portlizine finally decided to hire her own in-home help. But she couldn't hire the one decent attendant she finally got from the agency: There was a rule that if you hired any attendant you'd learned about through an agency you had to pay a $500 fee for "stealing."

Some state programs are changing once again, as activists try to re-assert control. California activists have been waging an ongoing battle to win a controlling voice on the "public authorities" that now run the IHSS programs. Leah Klein, co-chair of the task force for New Jersey's program, says having attendants come from agencies is "at cross purposes" with the program's original goals. ("I needed to have my laundry done -- the agency would do only two loads, but I had three loads.). Soon New Jersey gimps will be able to hire their own attendants with a "cooperative" acting as financial intermediary.

But consumer-control successes are relatively modest, and they've drawn little public notice.

The Americans with Disabilities Act made it through Congress, some think, only because activists took pains to assure that it would cost taxpayers no money. MiCASA architects say this change in the law won't "be a new entitlement" (read: cost new money), as opponents are charging. The bill's intent is to let Medicaid money "follow the person" to where they want to be (at home, presumably) and not automatically be earmarked for nursing homes, as it is now. And, says MiCASA, the "cost" of the program must be figured as an aggregate.

The nursing home industry is intensely unhappy that money they used to count on might become an iffy thing.

Oxford, who calls himself "a windmill-tilting optimist," insists that the money tree can be shaken by nursing industry profiteers with as handsome a result if MiCASA passes. Some activists are trying to use just that line to soften opposition.

The larger nursing home companies have by now gotten into the home health care racket, and home health agencies will be able to make even bigger bucks if MiCASA passes, because most people don't really know about the idea of "consumer controlled attendant care" -- and can be led docilely to agencies for aides. People who need in-home services will never think about controlling their own care, say some activists, as long as home health industry keeps a chokehold on legislators convinced professionals are more "ethical" than gimps.

Oxford says the industry won't fight the bill if they see they can make bucks from it. "And I think the insurance industry also sees this as a new market to exploit," he adds, noting the push for sales in long-term-care insurance. If this sounds to disability activists as if Oxford has climbed into bed with the enemy, he would demur. He would call it being realistic.

And it needn't mean that disabled people would necessarily lose having control over their attendants, he'd say. Control, he insists, can be achieved at the state level.

Once MiCASA is law, state regulations will spell out the particulars.

In the brave new world post MiCASA, attendants will almost certainly have to be "certified," says Oxford. Certification of anyone and everyone who does anything related to what the money interests will insist on continuing to call home "health care" is a given. But, he says, if you have somebody you want to hire, you can send him to get certified while he starts working for you -- that's what they do in Oxford's Kansas. Oxford banks on gimps shaping state rules to ensure consumer control once MiCASA is law. State rules, he says, are easier to control.

Connors feels the same way. "Nothing is perfect," he says. "Let's get something in place, and soon."

Eventually, I think, we will win." That's the optimistic Oxford talking again. "The average person could be behind this -- if they knew about it." But, he said, "ADAPT in general doesn't have a plan, an overarching strategy dealing with p.r. and communication. And no money to do anything about it."

Nursing home companies do, though. They have TV ads -- "even the local ones here do that," said Oxford. A survey by John Hancock Mutual Life Insurance Company found that most people don't have a clue about options other than nursing homes -- even though most folks are scared to death of ending up in one (See Ragged Edge's "D. R. Nation," Nov./Dec. 1997). These folks would probably love the idea behind MiCASA -- if they knew about it.

Connors fears that not all disability players are united behind MiCASA. A parent's group called Voice for the Retarded is actively fighting it. Some advocates back another bill -- S. 879, sponsored by Sen. Russell Feingold (D.- WI). Feingold's bill would also amend Medicaid but would be optional for states, not a mandate as MiCASA is. The activist party line to support both bills.

But Connors says that might not be enough. " 'Gee,' Newt might say, 'These disabled people don't know what they want. Maybe we'd better wait.' "

'A sweetheart deal
for nursing homes'

'Aggregate cost cap' in MiCASA would solve problem

There will always be some people who will need an attendant on call almost 24 hours a day, whose costs will be higher than average. Typically, a Medicaid waiver says that if the cost of paying for in-home help approaches the cost of being in nursing home (in New York, the cap is 90 percent), you have to go into a nursing home.

Connolly calls the cost cap "a sweetheart deal for the nursing homes." It's not hard to figure out who was behind getting "cost caps" into the rules -- or to understand the nursing home lobby's howling about MiCASA's provision that the "cost cap" no longer be figured on a per-head basis, but an "aggregate basis."

An aggregate cost cap computation is used in Kansas, says Mike Oxford. It works like this: the aggregate costs of Medicaid-paid in-home services -- for everybody using them -- are compared to the aggregate Medicaid-costs for nursing home stays. In-home services, when looked at as an aggregate, must not exceed, per person, the cost of a nursing home "bed." And of course they never do, figured this way. Figured this way, the nursing home industry loses out in its chance to snatch someone into a nursing home. Needless to say, the nursing home industry is very put out about this way of doing things. It's a biggie on their list of things to hate about MiCASA.

The number of Californians whose attendant costs soar above the cap is tiny -- fewer than 2 percent of the people using the program -- but those people are unfairly forced into nursing homes, says Aniece Taylor, head of the California drive to get the law changed there.

Taylor says that to succeed they have to mobilize severely disabled Californians -- the ones whom the cost cap affects -- to press their state legislators about the issue. "It's not a new priority for us," says Taylor, but, she says, since it affects such a small number of people, it's never been at the top of the priority list. Taylor hopes that will change.

MiCASA's "aggregate cost cap"

H.R. 2020 ensures that

"... the aggregate amount of the Federal expenditures for such individuals [in community settings] in a fiscal year does not exceed the total that would have been expended for such individuals to receive . . . institutional services in the year. . . " [emphasis added]

Guess what the
home health care
industry thinks of
'consumer control'?

"That group ADAPT wants home care aides to come in and give them meds and shots. Aides are not allowed to do that. There's legal bounds. Also, you can't make a demand for a certain aide. That's not going to happen."

Suzanne Keefer, Press Liaison for the National Association for Home Care, as quoted in Mouth, Nov./Dec., 1997

'An endless stream of cash'

by Marta Russell

James Brady, President Reagan's press secretary, was shot and brain injured but continues to live at home and function in the community thanks to a wife who did not want him dead and adequate civil service insurance which provided for necessary services. All should have access to such care.

[Historically, t]he "defect" problem in America was inextricably mixed with matters of money . . . . The market economy itself . . . constructed barriers that precluded segments of society from reaping any reward from it. It directly affected disabled people's ability to be productive members of the community.

The question for the entrepreneurial nation remains: what to do with the "unproductive," those not exploitable as laborers? And ultimately, how can disabled people be made of use to the economic order?

Disabled people are "worth" more to the Gross Domestic Product when we occupy a "bed" instead of a home. When we individually generate $30,000 to $82,000 in annual revenues, the electronic brokers on Wall Street count us as assets and we contribute to companies' net worth. The "final solution" -- corporate dominion over disability policy -- measures a person's "worth" by its dollar value to the economy. The modern-day institution, the nursing home, has no deluded claim to "cure" . . . . [t]he nursing home solution to disablement evolved from the cold realization that disabled people could be commodified, Medicaid providing an endless stream of cash.

Why doesn't the ACLU make the case for the "individual" right to in-home attendant services and decent health care? Isn't it a matter of personal liberty to remain in one's home and not be forced into profiteering institutions like nursing homes?

Excerpted from chapters in Marta Russell's forthcoming book, Beyond Ramps: Disability at the End of the Social Contract.

Speaking of nursing home 'quality of care' ...

Nearly 22,000 nursing home patients in California died from preventable conditions such as malnutrition, dehydration and urinary tract infections between 1986 and 1993, said a report made public in October. The findings were based on a review of 300,000 death certificates by Palo Alto attorney Von Packard and made public by the Los Angeles Times when Sen. Charles E. Grassley (R. - IA), chairman of the Senate's Special Committee on Aging, began a federal investigation.

Nursing home industry officials reacted angrily to the story, accusing Packard of seeking "free advertising" and of mimicking aggressive legal challenges to nursing homes in Florida and Pennsylvania. They said the lawyer's method of examining death certificates was not "a sound way to assess the quality of care."

Grassley is also looking into whether the federal Health Care Financing Administration is doing an adequate job of disciplining nursing homes where violations of federal nursing home rules are reported, said the L.A. Times. Time magazine has reported that only two percent of nearly 10,000 nursing homes with significant deficiencies were ever penalized.

The usual suspects
Opposition to MiCASA surfaces

MiCASA will harm "individuals with severe or profound mental retardation receiving care in large private and state-owned residential facilities" says an "urgent alert" from a group calling itself Voice of the Retarded.

VOR is to date the most vociferous of disability groups who oppose MiCASA.

Some supporters of the Feingold attendant services bill complain that MiCASA does nothing to address the attendant service needs of people who are not Medicaid eligible. And that's true, says MiCASA designers; their bill is specifically an effort to amend the Medicaid program. Other bills, they say, that can set up a larger national commitment to in-home services are great -- that's just not what MiCASA does. MiCASA was an effort to take advantage of the mood to reform long-term care and to use Rep. Newt Gingrich's position to get an in-home services bill through Congress.

Advocates say it's politically savvy to support both MiCASA and Sen. Russell Feingold's bill, S. 879.

But VOR isn't pushing another in-home services bill. It's simply against MiCASA. VOR president Polly Spare calls MiCASA "a new entitlement program" -- buzzwords of right-wing, anti-government forces.

MiCASA backers stress that this bill is specifically not a "new entitlement." "It is limited by the eligibility criteria for nursing homes and ICF-MRs" under the current Medicaid program, says ADAPT. The bill itself specifies that "the aggregate amount of the Federal expenditures for such individuals in a fiscal year does not exceed the total that would have been expended for such individuals to receive such institutional services in the year." So far, ADAPT's explanations haven't softened VOR's opposition.

VOR critics speculate that the group, ostensibly made up of parents who've put their kids in institutions, may also be fueled by workers in state institutions who are scared that once MiCASA is law, money for institutions will dry up and they'll be out of jobs.

VOR's letter says that MiCASA "redirects existing Medicaid dollars from developmental centers to community-based attendant care services."

Wrong, says ADAPT; "MiCASA allows people with mental and physical disabilities, or their families who are eligible for nursing home or ICF-MR services to choose to use these dollars" for in-home services. "Nothing in this bill redirects money from developmental centers to community-based attendant services or forces an individual or family to choose this program," says ADAPT. "It allows the money to follow the individual into the setting of their choice instead of any one particular setting," they say. "MiCASA allows for real choices."

VOR is reportedly working to inundate Congress with its anti-MiCASA message. It's just one of of many groups who will be pushing to derail the bill. The American Health Care Association, the nursing home lobby, was against it before it was ever introduced, and told Gingrich so. The nursing home lobby says that, among other things, it's worried about the "quality of care" people will receive if they're not under "medical" control in nursing homes.



It may seem that a group like the American Association of Retired Persons would support the idea of seniors being able to stay in their homes and get attendant services. The disability rights publication Mouth reports that at a recent AARP workshop on community based care in Pennsylvania, the speaker touted "assisted living facilities."

"The seniors in the audience saw what she was selling, and they weren't buying. 'I'm not here to learn about facilities,' one older woman hissed from the audience. 'I'm here to learn how to avoid facilities!' "

The American Health Care Association

The nursing home lobby opposes MiCASA, it says, because

  • it will "mandate" what is now an "optional" service
  • it won't reduce costs
  • it might let virtually anyone be cared for at home, even when it's not "cost-effective"
  • it creates a dangerous precedent of using Medicaid money for "non-medical" services
  • the "quality of care" assurances are inadequate

  • War chest

    ADAPT has launched a drive to fill a war chest to counter nursing home operators' lock on Congress," reports Mouth in its Nov./Dec. issue. The funds will be used "to put more people with disabilities onto the streets and into the halls of Congress now and in the months to come."

    "If you can't come to an ADAPT action, but you believe in what you're doing, send $25 or $100 to ACTION MiCASA."

    Mail your contribution, made out to ACTION MiCASA, to ADAPT War Chest, 1319 Lamar Square Drive, STE 101, Austin, TX 78704.


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