PLANT CITY — Charles Todd Lee spent a lifetime going backstage at concerts, following politicians on the campaign trail and capturing iconic shots of everyone from Dr. 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 lived in 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.
"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 who wanted community-based services, but were refused.
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.
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 proved that treatment professionals deemed community-based care appropriate for each patient.
In the end, though, the lawsuit isn't about the politicians or advocates, who are not necessarily on opposing sides. All say they want what's best for people who are sick and disabled.
John Boyd is one of them. He's 50 and became a quadriplegic 36 years ago when he fell off a wall and broke his neck. He's taking computer classes at Florida Community College at Jacksonville. For the last nine years, he has been in nursing homes. He hates them. "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.
The state, in its response to the lawsuit, questions the patients' ability to live on their own.