The U.S. Justice Department filed a lawsuit against Florida on Monday, accusing the state of unnecessarily institutionalizing about 200 disabled children in nursing homes and cutting services that would allow them to receive care at home.
Federal investigators visited six nursing homes around the state and identified about 200 children who didn't need to be there and could benefit from care at home or elsewhere in the community. They found that once in the facilities, many children stay for years, some growing up in the nursing homes.
The investigation found cold, hospital-like facilities where children share common areas with elderly patients and rarely leave or go outside. Investigators noted that the children are not exposed to social, educational or recreational activities critical to development. They also said educational opportunities are limited to as little as 45 minutes a day and that many of the children's families live hundreds of miles away, according to the lawsuit.
Parents say they have no other option because the state has slashed in-homes services, including nursing care for critically ill children on ventilators and feeding tubes.
Investigators also said Florida is violating the federal Americans with Disabilities Act and infringing on the children's civil rights by segregating and isolating them. The average length of stay is three years, federal officials said. Many of the children are physically disabled but mentally cognizant.
Florida Agency for Health Care Administration Secretary Liz Dudek said in a statement Monday that the state had recently improved an "already strong program" and that 31 children with disabilities have been discharged from nursing facilities this year.
She also chastised the Obama administration for the lawsuit. She said it "shows that Washington is not interested in helping families improve but instead is determined to file disruptive lawsuits with the goal of taking over control and operation of Florida's Medicaid and disability programs."
The federal government threatened a lawsuit in September if the state failed to make changes. Dudek initially denied the allegations, then repeatedly stated the problems had been fixed. She stressed that the state pays for all medically necessary services for children and that parents ultimately decide whether to place the child in a nursing home.
But parents have said they are desperately fighting to get services to keep their children at home. Until recently, the state instructed that in-home nursing services would be "reduced over time" as parents learned to perform medical interventions on their children.
Attorney Matthew Dietz, who filed a similar lawsuit against Florida on behalf of more than two dozen children, said the state has done little to actually move children out of the nursing homes, despite Dudek's claims. That lawsuit alleges more than 3,300 children with disabilities are at risk of being pushed into nursing homes due to a lack of services.
"(The state) pressures parents to place children in institutionalized settings and then gives them no way to get out," he said in a phone interview Monday.
Twelve-year-old Amy Root has been on the waiting list for at-home services since 2010. She was hit by a car, which left her a quadriplegic and unable to talk or communicate. She requires a feeding tube, suffers from seizures and requires round-the-clock medications. At first she had 24-hour in-home nursing care, but the state slashed those hours in half over time, said her mother, Sue Root.
Root, who is part of Dietz's lawsuit, said she stays up all night monitoring Amy and takes care of her other two children during the day when a nurse is there.
"What if she's having a seizure? ...I don't think any parent should have to have that kind of responsibility," said Root, a single mother from Edgewater.
In January, Dudek said she has visited the six nursing homes involved in the federal investigation and couldn't find any of the alleged problems. Still, she announced she was assigning nurse coordinators to each child to help parents who want to bring their children home find services such as private duty nursing, transportation and medical equipment.
The waiting list for services at home or in the community has jumped from 14,629 in 2005 to more than 22,000 in 2012, with more than half waiting longer than five years, according to the lawsuit. Currently, state policy does not give priority on the waiting list to children in nursing homes, federal officials said. The state provided additional funding in 2013, but it's only enough to enroll less than 5 percent of the waiting list in the program.
At the same time, the state turned down tens of millions of dollars in federal funds for a program that transitions people from nursing homes back into the community. The state also has been paying community-based providers less because of legislative budget cuts. Yet the state implemented policies that expanded nursing home care by offering facilities up to $550 in an enhanced daily rate for caring for children, which is more than double than what the state pays for adults, according to federal investigators.
Federal officials said they have "met multiple times with state officials in a good faith effort to achieve resolution of the violations" but ultimately decided "compliance with the ADA cannot be secured by voluntary means," according to the lawsuit.