People are always shocked when I tell them that, had my 15-year-old autistic son Charlie been born in a previous generation, he would have been institutionalized. “That still happens?” people say.
Yes, it does. At the start of September, U.S. Assistant Attorney General Thomas Perez threatened legal action against the state of Florida for essentially warehousing children with developmental disabilities – including babies — in nursing homes designed for elderly residents. In a 22 page letter to Florida’s Attorney General, the U.S. Department of Justice’s Civil Rights Division charged that hundreds of the state’s 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.”
Not only did the letter say that some of the children had spent at least a decade if not longer in nursing homes. It also alleges that the state of Florida had placed the children in nursing homes as part of a “system of care” that it has actually planned, structured and administered.
Florida Could Be In Violation of the ADA
The result has been that children have been subjected to “unnecessary segregation and isolation” in nursing facilities, sometimes hundreds of miles away from their families and in clear violation of the 1990 American with Disabilities Act (ADA), according to which individuals with disabilities are to be housed in community settings to the extent possible and not in institutional settings.
Indeed, the ADA led to concerted efforts to move individuals with disabilities out of institutions and into group homes and other community settings, as well as exposing the inhumane conditions of many such facilities.
Florida (Not Surprisingly) Denies Accusations
Florida is disputing the Departmetn of Justice’s (DOJ) accusations. Late last week, attorneys for three Florida state agencies sent a two page response to the DOJ, demanding to see its documentation and claiming the charges are based on “misinformation.”
“The state of Florida, through several state agencies, provides all medically necessary services to children with complex or fragile medical conditions — and does so in in the most integrated setting capable of meeting the child’s needs,” the agencies wrote, contending that 221 children have been placed in nursing homes “in consultation with their parents and doctors, and that the majority of those children rely on breathing or feeding tubes.”
The state also contends that the DOJ “essentially ambush[ed]” it by posting the letter on the DOJ website before the state of Florida had seen copies of documents, transcripts of interviews and nursing home inspection reports that the DOJ used.
Florida is also disputing the charge that there has been any kind of policy for systematically placing children with disabilities in nursing homes. Shelisha Coleman, a spokeswoman for Florida’s Agency for Health Care Administration (AHCA) emphasized in the Bradenton Herald that housing the children in such facilities was “medically necessary” and that the skilled staff of the nursing homes can provide expert care “up to 24 hours a day, seven days a week.”
Parents Want To Care For Children At Home
But interviews by the DOJ with parents reveal that many would prefer to care for their children at home, but have not been able to obtain the necessary funding from the state to do so. Indeed, disability advocates contend that housing children at home would cost the state less — indeed, money plays a large role in the state’s placing children in nursing homes.
In his letter, Perez pointed out that Florida has eliminated millions of dollars from programs that support families caring for children with disabilities at home and has also spurned $40 million in federal dollars which would also have made it possible for some children to remain at home. As Disability Scoop points out, Florida nursing homes receive over $500 a day to care for children with disabilities, more than double the rate for elderly residents.
As an example of how Florida is making it harder for parents to keep children with disabilities at home, the Bradenton Herald cites the case of a family with a “medically fragile” 8-year-old. Both her parents work but the family has still had medical services denied or reduced 13 times since 2006, according to the DOJ report. As the girl’s mother said, “It’s a fight and a battle all the time.”
Florida has also enacted policies that make housing children in nursing homes a preferable option, by repealing rules that placed a cap on how many children could be housed in nursing homes with adults.
A couple of years ago, a New Jersey school district’s behaviorist suggested that we consider placing Charlie in what they called a “temporary residential placement” at a facility in southern New Jersey. We had heard about this facility because of reports of the death of one of its residents, 14-year-old Matthew Goodman, in 2002. Matthew’s death spurred the creation of Matthew’s Law, under which the use of physical and mechanical restraints on individuals with developmental disabilities and brain injuries was limited, though not eliminated.
Needless to say, we had no interest in placing Charlie in such a place. We knew (and know) that the best place for Charlie is at home with us, supported by school and other services, for the duration of his life.
I know of a number of families whose children have medical needs far exceeding Charlie’s and who are just as determined that their children live at home with them. Their houses are full of medical equipment (oxygen tanks, feeding tubes, wheelchairs and much more) and they provide the best care they can for their children in a home setting and with fulsome supplies of love.
I urge the DOJ to pursue its case against Florida and fight on behalf of those hundreds of children and their families in Florida. Perhaps the parents gave “consent” but under what circumstances? What funding options, or lack thereof, were staring them in the face because the state of Florida had taken them away?
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