PLANT CITY, Fla. (AP) — Charles Todd Lee spent a lifetime going backstage at concerts, following politicians on the campaign trail and capturing iconic shots of everyone from Martin Luther King Jr. to Mick Jagger to Mickey Mantle. Today, he enjoys such freedom only in his dreams.
The 67-year-old photographer has been confined to a nursing home for five years, the victim of a stroke that paralyzed his left side. And he’s angry.
“Most of the people come here to die, so you want to die,” he said. “It is a prison. I can’t escape it.”
Lee is among the Medicaid recipients across Florida challenging the nightmare of the old and disabled: to be forced from comfort and familiarity into a nursing home.
They say the state is illegally forcing them to live in nursing homes when they should be able to live where they choose. Advocates charge that nursing homes, afraid of losing money, have successfully pressured politicians to make qualifying for community care more difficult. They have filed a federal lawsuit seeking class-action status on behalf of nearly 8,500 institutionalized Floridians.
Whether the litigation gets Lee and others moved out of nursing homes remains to be seen. But at the very least, it has illuminated the frustration experienced by older people or those with disabilities who say they’re shuttled into nursing homes when they are healthy enough to live at home, with relatives, or in other less institutional settings.
“There are very, very, very few people who cannot be cared for outside in the community,” said Stephen Gold, a Philadelphia disability lawyer who, along with AARP attorneys and others, is representing the group. “Why should the state give a damn whether you put the money in the left pocket of the nursing home or the right pocket of the community?”
Americans who qualify for Medicaid and get sick or disabled enough to require substantial care typically have little problem gaining admission to a nursing home. But obtaining Medicaid-supported services at home, such as visits from an aide, is substantially harder and often involves a long waiting list, even though it may cost the government less.
Advocates for the elderly and disabled had hoped a 1999 Supreme Court case would change that. The Olmstead decision, as it is known, involved two Georgia women, both Medicaid beneficiaries with mental retardation who wanted community-based services, but were refused and were treated in institutions.
The high court ruled unjustified isolation of the disabled in institutions amounted to discrimination under the Americans with Disabilities Act. It said states must provide community services if patients want them, if they can be accommodated and if it’s appropriate. Medicaid is the state-federal partnership that provides health coverage and nursing home care to the poor.
“There’s a lot of concern that the nursing home industry is very powerful in many states and has made sure that a lot of Medicaid dollars go to institutional care as opposed to home and community-based care,” said Toby Edelman, an attorney at the Center for Medicare Advocacy.
States have been putting more money into community services, but not nearly enough to meet the demand of people who would rather stay at home than go to a facility. Nationally, state Medicaid payments for long-term community care have skyrocketed since the Olmstead decision, from $17.4 billion in 1999 to $42.8 billion last year, though spending on nursing homes and other institutions is still substantially higher.
A total of $59.5 billion was spent last year on institutional care through Medicaid.
The Florida Agency for Health Care Administration, the Florida Department of Elder Affairs and Gov. Charlie Crist’s office — the three defendants — all declined to comment on the litigation. So did the attorney general’s office, which is representing the defendants.
In court filings, the defendants have claimed the plaintiffs lack standing because they haven’t proven that treatment professionals deemed community-based care appropriate for each patient.
“Plaintiffs are not alleging that Florida’s Medicaid program has failed to cover their medically necessary services,” the defendants wrote. “Instead, plaintiffs want this court to second-guess the manner by which Florida’s elected officials and policymakers have chosen to make those services available in light of the state’s available resources.”
The American Association of Homes and Services for the Aging represents about 5,700 not-for-profit organizations from nursing homes to adult day care to in-home aides. A spokeswoman, Lauren Shaham, said there is “an institutional bias” in the Medicaid program that limits home and community care, but also noted nursing homes are needed for some of society’s frailest or most disabled.
The American Health Care Association, which represents about 11,000 nursing homes and long-term care facilities, a majority of them for-profit, also said such institutions were often most appropriate for round-the-clock care. Spokeswoman Susan Feeney noted, “You don’t want to be there but sometimes for health reasons beyond your control, you have to be.”
John Boyd, 50, has been in a nursing home for the last nine years. He hates them. He became a quadriplegic 36 years ago when he fell off a wall and broke his neck.
“I can’t choose what meal I want, I can’t have a visitor after 8 o’clock — it’s just like a prison without bars,” he said. “People are making decisions for and about me that don’t even know me or even care about me. All they care about is the money they’re getting for me.”

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