The US Justice Department (DOJ) is suing the state of Florida over its controversial practice of housing medically fragile and disabled children in geriatric nursing homes, where many have died.
The DOJ lawsuit alleges Florida state health care agencies have acted with "deliberate indifference to the suffering" of disabled children by "unnecessarily segregating" them in old-age nursing homes:
The state is in violation of the Americans with Disabilities Act (ADA) in its administration of its service system for children with significant medical needs, resulting in nearly 200 children with disabilities being unnecessarily segregated in nursing facilities when they could be served in their family homes or other community-based settings.
The 1990 ADA outlaws discrimination against people with special needs. The DOJ lawsuit alleges that Florida is violating the ADA by underfunding and mismanaging programs for disabled children so badly that hundreds of youngsters are effectively forced into nursing homes for the elderly, where many of them grow up-- or die.
"Unnecessary institutionalization denies children the full opportunity to develop and maintain bonds with family and friends, impairs their ability to interact with peers without disabilities, and prevents them from experiencing many of the social and recreational activities that contribute to child development," the lawsuit states.
The DOJ "has determined that compliance with the ADA cannot be secured by voluntary means," the lawsuit explains. The department is seeking a ruling by a federal judge declaring Florida's disabled childcare program in violation of the ADA and an order for the state to stop institutionalizing children.
The Miami Heraldreports Florida has severely slashed budgets and services that help families care for disabled children at home. Three years ago, state legislators voted to cut $6 million from a program that funds in-home private nursing for families wishing to keep their children out of institutions. Reimbursement rates for home care service providers have not increased since 1987, leading to "shortages of nursing services in certain parts of the state," the DOJ suit claims.
One Florida program that allows parents to care for their disabled children at home or in other non-institutional settings has a wait list of 22,000 names, the Herald reports. According to the DOJ suit, more than half of those people have been waiting for care for at least five years. The lawsuit further states that "fewer than five percent" of those waiting will be helped by additional funding granted by lawmakers earlier this year.
"As a result of the state's actions and inaction, the state has forced some families to face the cruel choice of fearing for their child's life at home or placing their child in a nursing facility," the DOJ says.
Some parents say their children wouldn't make it in an institution.
"[My daughter] would not survive," Karen Wallen told WFTV. "She might last between two days and two weeks, that's it. I think the state has a responsibility to help the parents that want their children to be home."
Since 2006, some 130 Florida children warehoused in geriatric nursing homes have died. One facility, Golden Glades Nursing & Rehabilitation Center in Miami Gardens, has seen two child deaths in recent years. In July 2010, Bryan Louzada, a 15-year-old born with devastating disabilities, died there after being institutionalized over the fierce opposition of his mother. Then in April 2011, 14-year-old Marie Freyre died at Golden Glades, 250 miles from her Tampa home. Freyre's mother was vehemently opposed to Marie's institutionalization; the girl, who suffered from cerebral palsy, died within 12 hours of being taken from her home against her family's will. Golden Glades has since shuttered its pediatric department.
As the budget for non-institutional care of disabled children shrinks, state health officials have allocated increasing funds to pediatric nursing homes. The state now pays around $550/day to house children in nursing homes, raising questions about the government priorities. Bryan Louzada's mother, for example, wanted to place him in a $300/day group home, but the state pushed him toward the $500/day nursing home where he died.
Mother Jonesreports that Republican-dominated Florida has been very reluctant to spend money on the care of disabled children. Gov. Rick Scott, a Tea Party favorite, even rejected $37.5 million in federal funding to help children out of nursing homes, allegedly because of his personal loathing of the Patient Protection and Affordable Care Act, better known in conservative circles as 'Obamacare.'
The Florida Agency for Health Care Administration (AHCA) issued a statement criticizing the federal government for what it calls interference in state affairs.
"Today's Obama administration action shows that Washington is not interested in helping families improve, but is instead determined to file disruptive lawsuits with the goal of taking over control and operation of Florida's Medicaid and disability programs," AHCA secretary Liz Dudek said. "Florida has made many improvements in its already strong program of caring for medically complex children and helping their families cope with their everyday challenges."
The state points to the fact that it has transferred 31 children from nursing homes back home or into their communities, as well as moved six children from hospitals back to their families, as proof of its commitment to providing the best possible care to disabled youngsters.