Nursing home residents sue for at-home care

By Stephen Nohlgren, Staff Writer
In print: Tuesday, April 1, 2008

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Since a stroke four years ago, 66-year-old Bud Lee can't lift himself out of bed or take himself to the bathroom. He would like to regain a bit of his old independence.

John Boyd, 50, has been paralyzed since 14. He would like an apartment of his own and a job, like when he answered customer service phones for Red Lobster a few years back.

Instead, both men live in nursing homes, a frequent situation when Florida Medicaid pays the bills.

That may change.

Lee, Boyd and five other nursing home residents backed by the AARP Foundation have filed a class-action lawsuit against the state of Florida under the Americans with Disabilities Act, citing a 1999 court ruling that helped spring mentally ill people from big, impersonal hospitals.

Plaintiffs in the nursing home case say they are in the same boat. They could live more cheaply in home-like settings, they say, if only the state would shed its bias toward institutions.

Medicaid allows nursing home residents only $35 a month in spending money, so they can't afford transportation, phones or their own food, the suit says. Sometimes, they face curfews.

This "perpetuates the segregation of persons with disabilities,'' the suit says.

Florida spends 87 cents of its Medicaid dollar on nursing homes when caring for the frail and disabled. Only nine states commit a smaller portion to home-based care.

Given today's budget crises, Tallahassee is not in an expansion mode. Waiting lists that keep people like Lee and Boyd from blending into the community are likely to get longer, not shorter.

But the clock is ticking.

Baby boomers, who once didn't trust anyone over 30, now face the prospect of their own decline. Other states are moving toward more at-home care. Florida will be pressured to keep nursing home care to a minimum.

"When that spike in demand for services hits, we will have to pay more attention'' to home-based care, says Tampa's Sandy Murman, a former legislator who specialized in long-term care. "But then we will be in crisis management mode.''

• • •

Jacksonville quadriplegic John Boyd is not your typical nursing home resident. He makes runs to Publix and convenience stores on a motorized scooter, buying cigarettes, sodas and lottery tickets for other residents. Until a medical condition interrupted his classes, he studied computer programming at a local community college.

Boyd figures the economics of his care are a slam dunk. Medicaid, a federal-state health program, pays Harts Harbor Health Care Center more than $4,000 a month to house him and tend to his personal care, a fairly typical nursing home bill for taxpayers.

Boyd thinks he could hire his own aides a few hours a day for half as much if he lived in subsidized housing or had his own place with a roommate. He once patched together a similar arrangement while living with his grandmother, until she died in 1994.

Living out in the community "would give me freedom,'' Boyd says. "Freedom to choose what I want for dinner. Freedom to choose who I want to work with me. If I had my own room, I would have a place I wouldn't mind bringing somebody back to, if I met somebody. If I meet somebody now, there's no place to go.''

Florida Medicaid does have a few at-home programs that appear to save money. The Nursing Home Diversion project and others run $1,100 to $1,800 a month.

But what's true for individuals may not apply across the board.

Some nursing home residents require too much care to stay at home. People at home often soak up other public dollars that don't factor into the Medicaid equation, programs such as food stamps, meals on wheels and subsidized housing.

Most important, no one knows how many people avoid public assistance because it would mean living in a nursing home. Give them options and thousands might leap at the chance for aid.

State officials declined to comment for this story, citing the pending lawsuit. But in court filings their lawyers suggest that a wholesale move toward home care could swell the Medicaid budget with new applicants.

"This is exactly the kind of policy decision that courts should leave to the elected state officials," the lawyers said.

• • •

Oregon elected officials committed to home-based care more than two decades ago.

They removed people from nursing homes and put them into assisted living. They sent aides into people's homes. They set up "adult foster care,'' where nurses and others tended to a handful of frail elders in private homes.

More than half of Oregon's long-term care dollars go to at-home care. Oregon now has fewer nursing homes than it did in 1981.

"Lots of people would rather die than go on Medicaid and go into a nursing facility,'' says Don Bruland, an aging services director in southern Oregon. "We gave them an option. We do serve more people, but our overall cost is quite reasonable and we are giving people what they want.''

Oregon pays at-home aides $9.90 an hour when they bathe a client, cook dinner or get someone out of bed. But if the aide is just biding time, the pay drops to $4.40, which minimum wage laws allow.

The average cost for keeping people in their homes: $850 a month.

Combining nursing home and community care, Oregon Medicaid spent about $24,000 per person in 2006. By comparison, Florida spent about $35,000.

"Many states recognize it is both preferable & and certainly more cost efficient to keep people at home,'' says Mary Kahn, spokeswoman for the federal Centers for Medicare & Medicaid Services, which oversees both programs.

"We encourage it, but we can't force states to do it.''

Florida is not Oregon. Retirees here tend to be younger, richer and healthier than their counterparts around the country.

When Floridians do grow frail, they often can afford private assisted living. As a retirement haven, Florida has relatively few nursing home residents, but those who do live in nursing homes tend to be extremely frail.

As a result, Florida may have less ability than other states to finance new at-home programs by cutting back on current nursing home care. There's not that much nursing home care to start with.

Photographer Bud Lee has little use for such nuances. All he knows is life in a shared room in Plant City's Community Convalescent Center.

Over a 40-year career, Lee shot for Esquire, Life and Rolling Stone magazines. He made movies and helped foster Ybor City's artistic renaissance.

He still draws with his good right hand and swims with a friend once a week at the YMCA. But he hates the monotony of his days.

A daughter in Gainesville wants to move him to housing for the disabled near her — if she could get Florida Medicaid to pay for an aide a few hours a day.

Disabled people there hold down jobs and get around town.

"That would make my life worthwhile,'' Lee says. "Right now, the days just go by. Sometimes they are so futile."