Citing federal civil rights laws that forbid the segregation of disabled people in large institutions, the U.S. Justice Department has joined Florida children’s advocates who say the state is improperly forcing children with complex medical conditions into nursing homes designed to care for frail elders.
The Justice Department Thursday night filed a pleading in federal court seeking to intervene in an ongoing dispute between Florida healthcare regulators and children’s advocates who say the state is warehousing sick children in nursing homes. The children, advocates say, have no ability to socialize with other kids, be stimulated mentally or receive speech and physical therapies that may improve their ability to function.
The original class-action lawsuit was filed in May, and names the Florida Agency for Health Care Administration, state Surgeon General Harry Frank Farmer Jr., and others as defendants. It was filed by Miami civil rights attorney Matthew W. Dietz; the head of Florida State University Law School’s Public Interest Law Center; Paolo Annino; and the North Florida Center for Equal Justice.
A spokeswoman for the healthcare agency, which administers the Medicaid program that pays for most nursing home bills, declined Friday to discuss the Justice Department’s involvement in the case, saying the agency cannot comment on pending litigation.
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At the center of the dispute is a federal law, the Americans with Disabilities Act, that requires state health regulators to house both children and adults with disabilities in settings that are as least-restrictive as possible. The law has been used by disability advocates and the federal government in recent years to shift disabled people out of large institutions and into group homes or family homes in community settings.
The law was landmark legislation designed to improve the lives of disabled people, many of whom had been forced to live in large, isolated institutions where they had no ability to interact with non-disabled peers, often deprived of such activities as going to a movie, visiting a museum or spending time at a park.
“It is a bad idea to house disabled children in geriatric nursing homes in general,” said Peter J. Brudny, a Tampa lawyer who is representing the mother of a 14-year-old girl who died last year in such a home. “That is not what nursing homes are designed for or prepared for.”
The May lawsuit argues that the state healthcare agency, called AHCA, has cut back on funding for sick children who live at home so dramatically that many now have been forced to live in geriatric nursing homes. Many others, the lawsuit says, will be forced in the future to move to a nursing home because their parents or caregivers can no longer provide the services the children need to remain at home.
The cutbacks, children’s advocates allege, are designed to shift the burden of caring for frail children from Medicaid, a joint state and federal healthcare program for the needy, to parents and caregivers — many of whom lack the skill to provide nursing care, or are incapable of both caring for their loved ones and maintaining a job.
State healthcare administrators, the Justice Department wrote, “have established a practice of routinely and improperly denying medically necessary services, and that results in shifting to parents and caregivers the burden of providing skilled care, even though these caregivers do not have the ability to provide such care.”
Advocates also claim that children with complex medical needs are not well-suited to living in a geriatric nursing home, where nurses and other caregivers are trained to care for elders with dementia and the infirmities of aging — not children with severe disabilities.
Dietz, who has represented the families of several children seeking to leave adult nursing homes — and has visited many of them — said forcing children to live in such institutions is cruel.
T.H., one of eight children named in the lawsuit, suffered a severe brain injury when she was shaken in infancy. At the nursing home where T.H. lives, Dietz said, the girl is schooled for 45 minutes three days a week. “When she goes back to her room, she is given no toys, no nothing,” Dietz said.
“They are not talked to; they are not touched,” Dietz said.
Dietz said that, when visiting a client, he noticed a child half-dressed lying openly on a bed. On an adjacent bed, Dietz added, a little girl was draped with a towel across her chest oozing with mucus from her nose and mouth. “Nobody bothered to wipe it off,” he said.
Even children who can walk, or be transported by wheelchair, have no opportunities to leave their hospital room and see the outside world,” Dietz said.
“They put them in front of a TV and leave them there,” he added.