A pediatric doctor who saw first-hand the misery caused by Florida’s “antiquated” practice of locking medically fragile children in nursing facilities, and preventing parents and caregivers from looking after them at home, has welcomed a court order ending the policy.
District court judge Donald Middlebrooks rebuked the state in a scathing 79-page ruling for its “systemic institutionalization” of the children, and flagrant breaches of the Americans with Disabilities Act (ADA) which compels care to take place in the least restrictive environment available.
Pediatric expert Mary Ehlenbach toured three nursing homes to compile a report used to guide the court’s decision, and praised Middlebrooks for an “amazingly comprehensive” ruling that ended an 11-year legal tussle between Florida health officials and the justice department, which accused the state of consigning the children to a life of loneliness and isolation.
“The site visits were emotionally taxing, particularly in light of the fact that I care for children with similar conditions and statuses who live with their families and are integrated into the community,” said Ehlenbach, medical director of the pediatric complex care program at the University of Wisconsin-Madison’s school of medicine and public health.
“To envision some of my own patients being forced to live in an institution, that really hit home for me. It was challenging.”
In testimony during a two-week hearing in May, she said she witnessed children abandoned for long periods in cribs with high metal bars on all four sides, with just an electronic tablet to engage them.
“One [child] was sitting alone in a stroller at the edge of an open common area,” she wrote in the report. “When I interacted with her, she tracked me with her eyes and smiled at me, clearly engaged with the interaction.”
At another facility, she saw a boy make a bolt for freedom as soon as a railing on his bed was lowered. It was, she said, another example of a child with “minimal medical needs” unnecessarily residing in a skilled nursing facility.
And according to the state’s own inspection records, other children were left for hours in urine-soaked diapers because staff were “busy” elsewhere.
“The approach of institutionalizing children is really quite antiquated,” she told the Guardian, noting that advances in technology, and a commitment to the proper funding of community care, had led other states away from the practice.
“The vast majority of children with medical complexity live at home, generally with their biological families, sometimes in medical foster homes. So I think the fact that [Florida] relies on the facilities, and it appeared they were extremely committed to keeping them, is not in line with the national landscape of care of children with medical complexity.”
Some parents, she said, were wrongly told their children would require private bedrooms and round-the-clock care at home, even though many shared rooms in the nursing homes.
Florida has about 140 so-called “fragile” children living in three state-licensed facilities in Broward and Pinellas counties, according to the Miami Herald.
Lawyers for the state argued that in almost every case it was in the child’s best interests to be cared for in the nursing homes, despite a number of families seeking discharge to their homes or community care.
They portrayed the legal proceedings with federal authorities as a battle of sovereignty, and claimed that a shortage of nurses meant it would be too difficult for the children to be cared for outside of the nursing facilities.
Middlebrooks was unimpressed, accepting the assertion there was a nursing shortage, but not the argument that nothing could be done about it. He also criticized a pediatric doctor who gave evidence for the state, whose experience was limited only to hospital settings, as “not credible”.
“Most of these children could thrive in their own homes, nurtured by their own families. Or if not at home, then in some other community-based setting that would support their psychological and emotional health, while also attending to their physical needs,” he wrote in the ruling.
“Unjustified institutionalization of individuals with disabilities is unacceptable, especially given the advances in technology and in the provision of home-based care. Any family who wants to care for their child at home should be able to do so.”
His ruling orders changes in procedures in order to keep children out of nursing homes, but it is not yet clear exactly what it means for the 140 already there.
The Florida agency for healthcare administration said in a statement to the Guardian that it would seek an immediate stay of the order, and would file an appeal.
“The judge’s failure to understand the law is demonstrable in his order. The court’s conclusion that the state’s actions or omissions force children to live in nursing homes against their parent’s wishes is unsupported and refuted by the evidence presented at trial,” the statement said.
“During the trial, witnesses testified that their medically complex children were in nursing homes for various reasons unrelated to the state or its policies. Not one parent testified that they are ready and willing to take a child home but cannot do so because of the state’s actions or omissions.
“The court’s conclusion that the state’s actions or omissions forced children to live in nursing homes against their parents’ wishes is a generalization unsupported and even refuted by the evidence presented at trial.”
Ehlenbach, however, has no doubt the ruling was the correct one.
“The best thing for the individual children institutionalized in Florida would be to have home and community-based services so they can be integrated into society, be reunited with their families and live their best life,” she said.
“On a broader scale, I would hope that other states will take notice that it’s imperative for home and community-based services to be prioritized for children with medical complexity.”
