Florida's sick and disabled children deserve better

Published Sept. 18, 2012

Call it official neglect. Florida is accused by the Obama administration and the parents of sick and disabled children of warehousing hundreds of those children in large nursing homes rather than helping them stay home with their families. Disabled children have a right to the support services that would allow them to live safely at home or in community settings. But the state has been fulfilling its duty for some children and not others, leaving it to the courts to set things right for the rest.

Parents have had to file a lawsuit to get the skilled nursing and home health aide help they are entitled to for their children, and in a letter sent to Florida Attorney General Pam Bondi this month, legal action is being threatened by the U.S. Justice Department's Civil Rights Division. An investigation by the Justice Department found that Florida is institutionalizing too many children who could thrive in their own homes.

The investigation found that some children are sent to nursing homes as infants and can spend years in institutions that may be 100 or more miles from home. The average stay for children is over three years, but the department documented some who had been there a decade or longer. Children consigned to these places live in glorified hospital rooms and are bereft of the kinds of interactions that allow for full development. Education is limited, the Justice Department's report says, with some receiving only 45 minutes of educational activities a day.

Meanwhile, the department found numerous cases where home-based help was denied or pared back for no good reason. One "medically fragile" 8-year-old girl had services denied or reduced 13 times since 2006, even as the girl's medical condition remained unchanged.

Florida's Agency for Heath Care Administration rejects the department's findings, saying "every family receives the appropriate level of care for their child." The agency's figures show that of the approximately 4,500 plans that were reviewed this year, a third had service hours reduced. And of the 365 appeals, the state prevailed almost half the time.

But consider some of the state's recent actions to limit home-based services and expand institutionalization: In 2011, Florida House Republicans blocked the state from receiving $37 million in federal funding that would have helped move children out of nursing homes and back into their own homes. That same year, the state slashed reimbursements 15 percent for service providers to people with developmental disabilities. Lawmakers have blithely watched as the waiting list grows for services for people with developmental disabilities, from under 15,000 in 2005 to more than 21,000 in 2012. Meanwhile, the state pays an enhanced rate of $500 per day per child for nursing home care, more than double what it pays to house the elderly.

Sick and disabled children have a right under the Americans with Disabilities Act to be cared for in the least restrictive setting. More than a decade ago, the U.S. Supreme Court ruled that the overinstitutionalization of people with disabilities is unlawful discrimination under the ADA. If Florida won't abide by the law and stop its shameful practice of shortchanging some families in need, the courts will have to intervene.