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PLANT CITY, Fla. - Charles Todd Lee (pictured) 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.
Beth Haller, Ph.D., is Co-Director of the Global Alliance for Disability in Media and Entertainment (www.gadim.org). A former print journalist, she is a member of the Advisory Board for the National Center on Disability and Journalism (https://ncdj.org/). Haller is Professor Emerita in the Department of Mass Communication at Towson University in Maryland, USA. Haller is co-editor of the 2020 "Routledge Companion to Disability and Media" (with Gerard Goggin of University of Sydney & Katie Ellis of Curtin University, Australia). She is author of "Representing Disability in an Ableist World: Essays on Mass Media" (Advocado Press, 2010) and the author/editor of Byline of Hope: Collected Newspaper and Magazine Writing of Helen Keller (Advocado Press, 2015). She has been researching disability representation in mass media for 30+ years. She is adjunct faculty in the Disability Studies programs at the City University of New York (CUNY) and the University of Texas-Arlington.