Medicare rule confines disabled

http://www.denverpost.com/Stories/0,1002,75%257E67950,00.html

By Barry Corbet
Sunday, July 15, 2001 - Captivity.

That's what Medicare, the health insurance program we pay into all our working lives, offers us if we ever need home care.

It's not all bad. Medicare's home health services often allow subscribers 65 and older - or younger, if they become disabled - to keep living in their homes in the face of illness or disability. But to get those services, they will have to stay at home.

All the time.

Steve Dolan, 56, a Boulder resident and former banker, was diagnosed with multiple sclerosis in 1978. He qualifies for home health care, but Medicare says that if he leaves his house, he'll lose the daily services he needs to get out of bed and into his power wheelchair.

"It isn't my health that's keeping me home," Dolan says. "They're doing it to me by law. I'm not allowed to go out to lunch with a friend or do anything that might improve my quality of life. If I leave the house, I could lose my benefits."

And if he lost them?

"I'd have to go to a nursing home."

Larkspur resident Leslie Terry, 50, was a data analyst when she became quadriplegic in 1993. Like Dolan, she can't leave home or she'll lose the services she needs to stay out of a nursing home. She knows this for a fact: Medicare has already canceled her benefits once. She appealed and got them back, but she'll lose them again if she leaves home.

"I pay taxes," Terry says, "and I pay for a library I can't even go to.

"That's very unfair and very un-American."

Rod Skogerboe, 70, retired chairman of the Colorado State University chemistry department in Fort Collins, became quadriplegic when he was thrown from a horse in 1996.

Medicare paid for morning and evening assistance until his home health agency learned that he drives using a van with a wheelchair lift and hand controls. His services were revoked, then reinstated on appeal, but he, too, is a captive in his own home.

"I still face the infrequent trip stipulation," he says. "I really cannot take the chance of visiting friends or going to senior citizens' activities."

Campaign for freedom

Dolan, Terry and Skogerboe are just three of thousands of Coloradans - and roughly 1 million Americans - who are affected by a punitive Medicare regulation.

Known as the "homebound rule," it says that recipients of home health care must be "confined to the home."

More specifically, the homebound rule limits home care to recipients needing skilled care under a physician's plan - not a problem for most applicants - and to those who can leave home only with a "considerable and taxing effort," a condition satisfied by the use of mobility devices such as canes, walkers or wheelchairs.

The mischief lies in Medicare's requirement that non-medical absences from home must be "infrequent and of short duration." Last February, the regulation was relaxed enough to allow absences for religious services and adult day-care programs.

"That loosens things up a little," says Ellen Caruso, executive director of the Home Care Association of Colorado, "but it certainly doesn't for the person with a disability who wants to be a participating part of society and doesn't want to sit at home all day."

The original Medicare home care benefit, Caruso notes, was for acute care. "It was about people getting out of the hospital, getting well and getting back on their feet. That left people with disabilities in only one place - in a nursing home - because that was the long-term benefit.

"Certainly the Medicare benefit has gone beyond acute care since then, but there's still that (homebound) rule. We sure don't like it, but we do have to follow it."

As home health agencies follow, so must Medicare subscribers who need home services. They can forget visits to family, back-to-school nights with the kids, vacations or volunteering in the community. And the rule affects all Medicare subscribers, not just those with visible disabilities. It can virtually imprison anyone with severe arthritis, cancer, emphysema or any of the other vexations of aging. Worse, many private insurers follow Medicare guidelines and apply the homebound rule to their under-65 subscribers.

David Jayne, 40, of Rex, Ga., has ALS - Lou Gehrig's disease - and needs daily medical help to survive. He attracted national headlines when his home health agency canceled his Medicare services after he attended a football game and went to the funeral of a friend who died of ALS. His benefits were reinstated on appeal, but he's still under house arrest.

Jayne has started a lobbying group, the National Coalition to Amend the Medicare Homebound Rule. More than 10,000 individuals and 40 organizations have signed on to his campaign, and former Sen. Bob Dole serves as its honorary chairman. On the organization's website (www.amendhomeboundpolicy.homestead.com), hundreds of people affected by the rule have posted testimonials, many of them heartbreaking. A sampling:

First I became a prisoner in my body. Now Medicare has made me a prisoner in my home! Please, President Bush, pardon me and others like me by amending the homebound restriction.

Vickie L. McQueary,

Louisville, Ky.

My dad has primary lateral sclerosis and has been denied home health care. Why should he be penalized because we love him enough to take him out to dinner or for a ride in the car?

Cindy Wells,

East Kingston, N.H.

My life is restricted so much already by my condition. Why is my own government trying to take that last shred of life away, too?

Karen Utz,

Dayton, Pa.

Fraud and family values

Medicare is the nation's largest health insurer. Administered by Central Medicare and Medicaid Services (CMS), previously known as the Health Care Finance Administration, it provides health insurance for the vast majority of Americans 65 and older and for people receiving Social Security Disability Insurance benefits.

Home health services amount to about 10 percent of Medicare's total costs. About 7 percent of Medicare home health recipients have disabilities.

The homebound rule was adopted to prevent fraud soon after the creation of Medicare in 1965. Administrations and fiscal restraints have come and gone, and the rule has variously seen both strict and lax enforcement.

After passage of the 1997 Balanced Budget Act, CMS began to interpret the rule aggressively and home services were summarily terminated for people judged not to be homebound. The vigorous enforcement continues today, and with ruinous results.

Elderly and disabled subscribers denied services have had to leave their families and homes to move into nursing homes. Many have transferred their assets to a family member or even divorced their spouses in order to qualify for Medicaid, which does not apply a homebound rule.

"Honest people are pushed into fraudulent actions because of the inconsistencies of the systems," says Skogerboe, who wonders why Medicare and Medicaid have such different rules.

And when people switch from Medicare, the federal insurance program we all pay into, to Medicaid, the state-run welfare program for poor people, the costs are largely transferred from federal to state budgets.

"They're using the homebound rule as a cost-containment measure," says Robin Bolduc of Boulder, who works in the health policy field. "They're just cost-shifting onto Medicaid; it's the feds cost-shifting onto the state. I would think the Governors Association would be real interested in that."

Bolduc's husband, Bruce Goguen, 48, has multiple sclerosis, works as a lobbyist and, with Bolduc, co-parents seven children. Because his job educating legislators keeps him moving around the community, and therefore in violation of the homebound rule, he can't qualify for Medicare. Bolduc provides all his care, including transferring him to and from bed and feeding him through a gastric tube. She prefers it that way, but what if she gets injured or sick?

"I can't get hurt," Bolduc says. "I can't get sick, or my husband winds up in a nursing home. It would be nice to know that if I got really got sick or hurt, Bruce would be able to get in and out of bed.

"Wouldn't a little backup once in a while make sense from a public policy point of view to support family caregivers? Tell me, how do "family values' fit into this?"

Dependent on the rules

It's a cruel irony of the homebound rule that if Medicare home health clients strive for maximum independence - something normally valued and rewarded by our culture - Medicare responds by canceling the services they need to be independent. If they consent to lead isolated and passive lives at home, they can retain their benefits. Medicare provides home care at the cost of dependence.

"The issue is not money," says Lew Golinker, director of the Assistive Technology Law Center in Ithaca, N.Y. "It is independence. Medicare is willing to spend the home health care funds and will allow people to keep their benefits as long as they remain invisible, behind their closed doors.

"It will cost Medicare nothing to allow people with disabilities to go out of their homes."

The homebound restriction, he says, saves no money and makes no sense. Curiously, Congress has been quite clear that it did not intend beneficiaries to be "restricted in their ability to go outside the home or that an absence from the home was only justified on the basis of medical necessity." Yet the homebound rule continues to be harshly applied.

"Medicare holds a guillotine over the heads of all the agencies," says Terry. "Everybody's scared to death of them."

Caruso says that since the 1997 Balanced Budget Act, one-third of Colorado's home health agencies have shut down. Although the closures are attributable to changes in how agencies are paid, not the homebound rule, the agencies are gun-shy. "People are worried about the oversight on Medicare," she says.

"Surveyors from the State Health Department are getting tougher, so agencies are more cautious today."

"The agency and staff can be at risk if we provide services when we are aware the patient is not homebound," says Rhonda Ward, director of quality for Centura Home Care in Denver. Does this diligence affect quality of care? "Nurses feel their duty is to help and serve. When you can't because of rules and restrictions, it's really tough. It definitely puts the agencies in a moral and ethical dilemma."

Steve Dolan is not appeased, pointing out the absurdity of holding people hostage in their homes. "My multiple sclerosis isn't going to go away just because I go somewhere," he says.

Conflict and resolution

Medicare's homebound rule is in conspicuous conflict with both a landmark civil rights law and a recent Supreme Court decision.

The Americans With Disabilities Act calls for a society that integrates people with disabilities; the homebound rule effectively segregates them in their homes or in nursing facilities. And a 2000 Supreme Court ruling, the Olmstead decision, confirms that services must be provided in "the most integrated setting." Olmstead addresses long-term care and Medicaid, not Medicare, but the national shift toward providing services in the community is evident.

"It is a glaring contradiction for Congress to be limiting the Medicare home care benefit while pushing for more community-based services under the ADA and Medicaid," says Steve Gold, a Philadelphia lawyer and disability advocate.

A core problem of the homebound rule is the way eligibility for services is determined. The rule implies that if you can leave home frequently or for lengthy periods, you don't need services. It ignores the fact that people who cannot get out of bed without assistance can often use technology to be mobile once they're up.

"I can drive," says Skogerboe, "but not unless somebody first gets me out of bed, dresses me and puts me in a power wheelchair that can take me to my adapted van." Yet because he can drive after services are provided, Medicare canceled his services.

"The error in this process is obvious," says Golinker. "It can be traced to a single question: Can beneficiaries dress, feed, bathe and transfer themselves to their wheelchairs or other mobility devices without assistance? For those Medicare beneficiaries who cannot, a determination of homebound status is appropriate."

In April, Rep. Ed Markey, D-Mass., introduced a strikingly simple remedy in the House - the Medicare Homebound Clarification Act of 2001 (HR 1490).

It strikes the language requiring non-medical absences from the home to be infrequent and of short duration, and retains the requirements that skilled care be necessary and that leaving home be taxing. The bill had 50 co-sponsors at press time, and a companion bill is brewing in the Senate.

CMS hasn't yet taken a position on HR 1490, and won't until the bill is scored by the Congressional Budget Office. Nor has the National Association of Home Care, although it recommends a similar solution.

HR 1490 will help many, injure no one, and deserves the support of all Americans. Please sign the petition on David Jayne's website and urge your congressional delegation to support the bill. If HR 1490 passes, it will end Medicare's outworn dictum that people who need home care to be mobile must be barred from an active life.

Barry Corbet is the former editor of New Mobility (www.newmobility.com), a magazine that covers disability culture and lifestyle. He can be reached at bcorbet@rmi.net.