Medicare's homebound regulation is an idea whose time has gone

By Miriam Braunstein

Vicki O'Neal usually speaks softly, but she raises her voice to say that she doesn't want to stay home anymore. And she repeats it: She wants her freedom back.

Until a car accident in 1993, the 32-year-old former teacher took freedom for granted. After she broke her neck, she learned a whole new way of life as a C5-6 quadriplegic. Getting used to a life in which she can't bathe or dress herself, can't get out of an electric wheelchair unassisted, and relies on aides and nurses for bladder and bowel care has been hard. At first she wasn't well enough to go out, and even after her health returned, she wasn't sure she could make a life for her new self.

But, like a rehab success story, O'Neal overcame her own fears and other people's stares and started to find her niche in mainstream society. She began volunteering at an elementary school near her Carrboro, N.C., apartment. Working out her upper body at a local health club. Seeing the occasional movie and going to lunch. As long as she had her twice-a-day aides to get her up in the morning and into bed at night, dress her, bathe her and empty her legbag, and occasional R.N.'s for bowel programs and catheter changes, she could spend her days however she pleased.

Or so she thought. Once her home care agency found out O'Neal was leaving her apartment regularly, Medicare, her only source of home care benefits, promptly cut her off. The reason? A Medicare regulation governing home care that pays only for services to clients whose absences from home are "infrequent and for periods of relatively short duration" and "require a considerable and taxing effort." O'Neal, Medicare said, was leaving her home every day, and was no longer "homebound." No matter that her physical status was exactly the same--no more aides or nurses.

As O'Neal understood it, if she was active, the services that kept her active would be cut off. If she was inactive, Medicare would pay to keep her active. But Medicare didn't see the contradiction, and her first appeal was denied. It was only after two appeals, two lawyers and nearly a year that she had her services reinstated.

Although she has her home health care back, O'Neal doesn't feel she's won any battles. She had wanted to point out to Medicare the absurdity of a law that allows for existence, but no life. Instead, she managed to convince a judge only that her medical status qualifies her as homebound. Knowing that the regulation still stands makes her nervous. "What they nailed my butt on was 'infrequent and of short duration,'" O'Neal says. "It could happen again."

So because she fears for her own benefits, and because she has met so many people who are in her situation, Vicki O'Neal is still fighting the homebound regulation, as Medicare calls it. "This isn't over just because I got my care back," O'Neal says. "I want them to say, 'Vicki O'Neal can leave her house.'"

Older, but No Wiser O'Neal is battling a formidable opponent. The homebound regulation is an old one, originally added to the Medicare handbook in 1965. It took on additional power in 1990, when a revised version of the regulation was taken from the Medicare handbook and added to Medicare law. This was done to prevent home care agencies from interpreting the regulation too liberally; until it was redefined, they all had their own notions of what "homebound" meant.

With the regulation now backed by law, rather than administrative suggestion, it is strictly enforced by home care agencies fearing accusations of fraud--as O'Neal discovered when her provider turned her in to Medicare. Yet the purpose of the regulation has remained the same for the 32 years it has been in effect in various forms: It limits the program. Home care is expensive--O'Neal's aides cost $110 a day, and there is no co-pay required from the consumer, leading to huge costs for Medicare.

According to O'Neal and other critics of the regulation, its age is part of the problem. In addition to reflecting the medical-model attitudes of the 1960s, the regulation does not take into account the technology of today. Thirty-two years ago, the only way for people with severe disabilities to leave their homes was with the help of aides to push their wheelchairs, open doors and bump them up curbs. Power wheelchairs like O'Neal's mitigate the transportation problem, and Section 504 and the Americans With Disabilities Act--both of which came long after the homebound regulation--make the United States much more disability-friendly. What the law ought to take into account, O'Neal says, is her level of function without home health aides. Without them, she says, she is not only homebound but bedridden.

"When the policy was written, it was for people just like me," she says. "Somewhere, someone had some good thinking. But it's hurting people it was supposed to help."

The Medicare situation is at a critical point. There is currently a proposal before Congress to make standards for health care agencies more stringent, to place more responsibility for quality of care on the agencies and, once and for all, to redefine "homebound"--this time as 16 nonmedical hours outside the home per month. O'Neal has heard about the proposals and is afraid that new laws will cut her off again if she doesn't stay home.

Grounded by Medicare John Neal has also been following the proposed legislation and agrees with O'Neal's criticisms of the homebound regulation. But because he has been a quad so much longer--since 1962--he is more sanguine. At least, until he begins telling the story of his van, which the homebound regulation kept him from driving for more than 10 months.

Like O'Neal, Neal is a Medicare recipient and has been since 1981. Because he lives with his parents in Marshall, Texas, Neal began using Medicare's home health services only when his father had a stroke and his mother became unable to do all his care herself. Then a home health agency took over his day care.

His father's stroke brought another change--Neal began driving the adapted van he had owned for six years but that his father had driven. His mother now depended on him to run errands, and with the zero-effort quad controls in the van, he could. The setup worked well for awhile.

"When I signed up with the home health agency, I knew the [coordinator] personally and the van was no issue," Neal says. "I drove for four years. Then she came out and said that if I drove anymore, there would be nobody the next day to come get me up. She'd do me a favor to get me to bed." It was no driving or no home care.

Neal's first instinct was like O'Neal's--he contacted his congressional representatives to complain about the regulation. They didn't help. A lawyer initially interested in the case dropped it to work on a political campaign. Neal says he couldn't find anybody who would admit to having any sway over the regulation. National officials sent him back to Dallas officials, who said there was nothing they could do.

"They just passed the buck," he says. After five months at home with no success, Neal began secretly driving his van. "When I snuck out driving, I looked in the rearview mirror constantly because if they see you, they'll cut you off," he says. "I worried all the time."

Although Neal's original lawyer returned a few months later and convinced an appeals judge that driving--which is not mentioned in the homebound regulation--was acceptable, Neal's victory is bittersweet. He can drive again, but the homebound regulation is holding fast. Neal knows that if his home care is cut off, it will be a matter of time before his savings are exhausted and he is put in a "rest home," as he calls it. He's working with his congressman, Max Sandlin, to make changes.

"We're still trying to introduce a bill for people like me to get out," Neal says. "There's other people in my condition."

Congressional Indifference O'Neal and Neal, their consciousness raised by bitter experience, join a large circle of people stuck in regulations governing in-home care. Although their experiences are with Medicare, similar complaints have been lodged against Medicaid and private insurance companies, charging that it is far easier for people with disabilities to be placed in nursing homes than to receive care in their homes. But both O'Neal and Neal are discovering that complaints from a single person are often ignored, or dismissed as isolated cases. Both have contacted politicians on the state and local level. Neal is still working with his congressman, but says that during his 10 months of struggle, no politician has interceded on his behalf. O'Neal even sent letters to both President Clinton and first lady Hillary Clinton. She received no response from the president. From Sen. Jesse Helms, Rep. David Price and Hillary Clinton, she received platitudes, letters and sympathy, but no action.

"No one has done anything real," O'Neal says.

In response to the widespread indifference, advocacy groups have formed to present a unified front to lawmakers. Denver-based ADAPT--American Disabled for Attendant Programs Today--is anti-nursing home, pro home care, and its members use protest and civil disobedience to push for CASA, the Community Attendant Services Act. CASA would establish a system of community-based home care by diverting one-third of Medicaid's nursing home budget. According to ADAPT, the problem with both Medicaid and Medicare is that they're founded on low expectations for disabled people.

"The laws are pretty much set up on a medical model," says Dr. Ida Unsain, a member of the Denver chapter who has worked with Medicare and Medicaid for more than 40 years. "Common sense says that if you're sick, you take to your sickbed. A lot of individuals who are disabled need home health, but they're not sick."

Like O'Neal and Neal, she says, many people are perfectly functional with appropriate support, but are living in a system that cares for them at the expense of their independence. Cost-cutting takes precedence over providing quality services.

"They have mobility issues," Unsain says. "For them to be told, 'Don't leave your home,' is turning the home into another institution. It's not conducive to integration into the community. Homebound shouldn't be an issue; it should be driven by the needs the individual has."

Unsain echoes the fears of both O'Neal and Neal: "What happens to the freedom and liberty of the individual? What is a meaningful life versus an existence?"

HCFA Responds The Health Care Financing Administration, or HCFA, is the federal organization that runs Medicare. It knows about the protests and it has listened to the advocacy groups. The problem with the complaints it has heard, says Thomas Hoyer, director of HCFA's Office of Chronic Care and Insurance Policy, is that they're arguing not about one restriction of the home care program, but about the nature of the program itself.

"It was originally meant as the last step in a continuum of care," Hoyer says. "It was a short-term measure." The program has evolved since then, and there is no longer a limit on the number of days that care is provided. Because it has no co-pay, he says, it is actually one of the more liberal Medicare programs.

Hoyer says he does understand the complaints, but he remains accountable to Medicare regulations, which often run counter to the demands of the consumer. Even within protesting advocacy groups, he says, there is conflict. "If you say Alzheimer's is exempt, someone will argue. You'll go through the whole range of exemptions. There's room for a variety of theories."

Another problem, Hoyer says, is that the homebound regulation suffers from a "lack of clarity." The currently proposed legislation, which was drafted after the homebound regulation became law, was meant to correct the ambiguities. And the six years that elapsed between the time it was drafted and the time it came before Congress? "There was no national consensus," Hoyer says. "We thought maybe we should just wait."

The wait ended earlier this year when the inspector general decided to make the regulation more explicit and let Congress decide if the wording is appropriate. Although the 16-hour requirement, as worded now, "grotesquely oversimplifies" the definition of homebound, Hoyer says, it will settle the uncertainties that home health agencies and individuals struggle with. There is a chance the legislation will pass, he says, but a good chance it won't. If there's no change to the current law, "homebound" will remain unclear.

He knows how volatile the issue has become, Hoyer says, and understands that many people see the regulation as outdated in the light of adaptive technology and new health care models. Still, little can be done to the law in its present form. "I see the argument," he says. "There's a lot of adaptive technology. There's a lot of people who could use home health. Whatever the argument, you're on one side or the other."

Redefining Inclusion In the meantime, Neal continues to contact politicians, and O'Neal's case has been picked up by Bill Hatch, an attorney with the North Carolina Governor's Advocacy Council for Persons with Disabilities. Hatch says his focus now is to obtain a personal waiver for O'Neal so she can't lose her benefits again. After that, he says, they need to convince Medicare to change the homebound regulation so that other people are spared O'Neal's experience.

Hatch wants Medicare to consider a home care recipient's function before services are provided. "Is the person homebound before receiving services or after?" Hatch says. "They're identifying them at the wrong time. Anybody can get out of the house with enough services." And it makes no sense to him, he says, that the homebound regulation is still enforced in light of the ADA.

"What the ADA says is, 'Make people a part of things, work on getting more inclusion,'" Hatch says. "But what Medicare is saying is, 'You can receive your services if you stay in your home.' Ms. O'Neal could easily be homebound, but she doesn't choose to be."

While O'Neal stages her battle, other people choose, of necessity, to simply lie low. One 69-year-old recipient of Medicare home care, a quad for eight years, admits that he curtails his activity in order to remain eligible for services. He knows of the new legislation, and tries to make his congressional representatives aware of his disapproval. Yet, staying out of a nursing home is his main goal. And staying home frustrates him.

"[The homebound regulation] is very limiting to people who have ambition," he says. "It should allow people to participate in the community. It goes contrary to our objectives and goals."

That, Hatch says, should be the purpose of home care--to let people with disabilities live in mainstream society. "If you're disabled, you're disabled," he says, and that ought to be the only guideline.

---

Send a letter to the editor to comment on this story

Order this issue for $ 5.00

Search Magazine Archives:

Website Services: Degnan, Co.