By Carol Marbin Miller, The Miami Herald –
MIAMI — Florida health and disability administrators have been systematically dumping sick and disabled children — some of them babies — in nursing homes designed to care for elders, in violation of the youngsters’ civil rights, the U.S. Justice Department says.
Hundreds of Florida children are spending their formative years in hospital-like institutions, sometimes growing up in the equivalent of hospital rooms with virtually no education or socialization, the Justice Department’s Civil Rights Division wrote in a 22-page letter to Attorney General Pam Bondi. Bondi’s office is defending the state against a previously filed lawsuit that claims the institutionalization of children violates federal law.
The letter, written by Assistant U.S. Attorney General Thomas E. Perez, is the federal government’s first attempt to weigh in on the controversy. At the end of his letter, Perez outlined a series of steps the state could take to reduce its reliance on nursing home beds for frail children. If state leaders fail to “correct” the practice, Perez wrote, “the Attorney General may initiate a lawsuit” of his own.
Some youngsters remain in nursing homes for much of their lives: “a number” of kids, the report said, have spent a decade or longer institutionalized, including some children who entered the facilities as infants and toddlers.
“Indeed, the state has planned, structured and administered a system of care that has led to the unnecessary segregation and isolation of children, often for many years, in nursing facilities,” the report said.
Under the federal Americans with Disabilities Act, people with disabilities or medical conditions must be housed and treated in community settings whenever possible, not in large isolated institutions as most states did in previous decades. Since the law was passed in 1990, advocates for disabled people and children have used it to shut down often squalid institutions and to move disabled and mentally ill people into their own homes or into group homes that are part of larger communities.
In recent years, however, Florida health administrators have relied upon nursing homes to house hundreds of children who could safely live at home with their parents — often at less expense to the state, advocates claim. In his letter, Perez said the state has cut millions from programs that support the parents of disabled youngsters, refused $40 million in federal dollars that would have enabled some children to stay or return home, encouraged nursing homes to house children by increasing their per diem rate — and even repealed state rules that limited the number of kids who could be housed in nursing homes with adults.
Such policies, the Justice Department says, are not only contrary to federal law, they hurt children: Housed in nursing homes that are ill-equipped to care for them, youngsters often are deprived of an education, are unable to see their own parents and siblings — many of whom live hundreds of miles away — have no ability to socialize with typically developing peers, and sometimes are forced to sit for hours in front of a television for lack of recreation or other activities.
In court pleadings, and in a statement Thursday to The Miami Herald, state health regulators say they are complying with all provisions of the landmark law. The state provides all services that are “medically necessary” to sick and disabled children — including skilled nursing care and home health aides — “up to 24 hours a day, seven days a week,” said Shelisha Coleman, a spokeswoman for the state Agency for Health Care Administration, or AHCA, which is a defendant in a 2012 lawsuit that makes the same claims as the Justice Department.
Health administrators chided the Justice Department for essentially ambushing the state Thursday by releasing the strongly worded report on a DOJ website without first providing the state with copies of documents, transcripts of interviews and nursing home inspection reports upon which the Justice Department based its findings.
The state, Coleman said, does not have any policies or rules designed to force children into nursing homes. Advocates for sick and disabled children, she added, are complaining about individual decisions made solely on the basis of what is most appropriate for each child, she added.
In a court pleading last June, AHCA said federal law allows the agency to “place appropriate limits on a service based on such criteria as medical necessity” and cost-cutting.
In its report, though, the Justice Department said such individual decisions — some of which are “applied irrationally or without appropriate consideration of the child’s needs” — reflect a systemic policy that forces families to institutionalize their loved ones. During its investigation, the DOJ visited large nursing homes that collectively house more than 200 children in Miami, Fort Lauderdale, Orlando, Tampa and St. Petersburg, interviewing families and caregivers along the way.
The parents of one 8-year-old girl who is “medically fragile” and lives at home, though both parents must work, have seen medical services for their daughter denied or reduced 13 times since 2006, the report said, even though the girl’s condition has not improved or changed. “It’s a fight and a battle all the time,” to avoid institutionalization, the girl’s mother told investigators.
Matthew Dietz, a Miami civil rights attorney who already is challenging the state’s practices in federal court, called the report a “stinging indictment” of the state’s policies governing disabled children. “It’s a story of a systemic attempt by the state of Florida to deprive families and children with disabilities of the care needed to merely survive in a community-based setting,” Dietz said.
“The state’s reliance on nursing facilities to serve these children violates their civil rights and denies them the full opportunity to develop bonds with family and friends and partake in educational, social and recreational activities in the community,” Dietz added.
Deborah Linton, who heads The Arc of Florida, an advocacy group for people with developmental disabilities, said members of her group were “alarmed, as well as saddened” that warehousing children in nursing homes had “become an acceptable practice” among state social service administrators.
Other states, Linton said, have developed and funded programs that allow families to care for sick or disabled children at home — often at less expense than nursing homes and institutions.
“Florida can do better by these most vulnerable little ones,” Linton said.