MIAMI — Florida’s “widespread” violation of the civil rights of children with severe disabilities has caused scores of youngsters to be raised in sterile institutions far from their families, a federal appeals court found, rebuking the state for failing Florida’s frailest children.
The 11th U.S. Circuit Court of Appeals found that Florida’s unwillingness to provide adequate in-home nursing care to the state’s most fragile children has caused at least 139 youngsters to be institutionalized in nursing homes generally reserved for elders, some of them there since they were babies. Another 1,800 children are at risk of being placed in nursing homes due to the state’s failure to provide care.
“Medically vulnerable children — for example, those who require specialized care like breathing tubes — require around-the-clock care or they may sustain significant injuries and even die,” U.S. Circuit Judge Adalberto Jordan wrote in an opinion endorsed by Circuit Judge Nancy G. Abudu. Circuit Judge Andrew L. Brasher dissented.
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“That so many of these families have found ways to keep their children at home — often at great personal sacrifice — does not lessen the imminence of the future risk they face. Placing one’s child in an assisted care facility is not a choice that families take lightly,” the opinion stated. “And … some parents may justifiably fear that their children will face neglect at such a facility.”
The appeals court’s opinion upheld a July 2023 ruling by U.S. District Judge Donald M. Middlebrooks that Florida’s unwieldy system of funding and providing care for children with medical complexities, which relies largely on managed-care providers who are unaccountable to the state, has left families in “a maze almost impossible for parents to escape.”
Middlebrooks ordered the state to improve community-based care for kids with severe disabilities to reduce its reliance on institutions. Among the provisions of Middlebrooks’ order: a requirement that health administrators ensure that children with complex medical needs receive at least 90% of the private duty nursing care their care plans prescribe.
His injunction also requires an independent monitor, at the state’s expense, to oversee the state’s compliance with Middlebrooks’ order. The monitor would have the power to hire staff and consultants, interview stakeholders and gather data on Florida’s progress.
DOJ sues state
In 2013, the U.S. Justice Department’s Civil Rights Division sued the state, arguing in a class-action lawsuit that health administrators had made it so difficult for the parents of children with complex medical needs to raise them at home that they chose instead to leave their kids in nursing homes.
Federal laws such as the Americans with Disabilities Act require the states to provide care in settings that least restrict people with disabilities from participating in the same community activities as others.
“Historically, disabilities were stigmatized, and those with disabilities were regularly placed in institutions with little to no contact with the outside world,” the appeals court wrote. “Congress therefore identified ‘isolation and segregation’ of disabled persons by society as a form of discrimination.”
Florida’s system of care, Justice Department lawyers said, discouraged the parents of children with complex medical needs from raising them within their families by making that option unsafe or unfeasible. Many parents were faced with the choice of staying up all night to monitor a ventilator, or risk the death of a child. Other parents lost jobs and income because poorly paid private duty nurses failed to show up for their shifts, forcing parents to stay home.
The Justice Department’s action followed a similar suit — dismissed by a federal judge — filed in 2012 by Florida children’s and disability advocates representing the parents of children stuck in nursing facilities.
“Children deserve, and have a right under the Americans with Disabilities Act, to live in their homes, and families should not be left with impossible choices to fill complex medical gaps themselves or institutionalize their child,” said Matthew Dietz, a disability rights attorney who helped spearhead the original suit.
A spokeswoman for the Agency for Health Care Administration — which oversees Florida’s Medicaid program for people in poverty or with disabilities — did not respond to a request from a Herald reporter to discuss or comment on the opinion. Medicaid subsidizes most of the medical care for children with severe disabilities.
Florida has vigorously fought any effort to force health administrators to pay for additional in-home nursing, or to implement other remedies that might reduce the state’s reliance on institutions.
Florida: Feds can’t tell state how to operate
In recent years, Florida has not explained its reluctance to pay for improvements in care for children with extreme medical needs, except to say that the Justice Department’s meddling in Florida’s affairs is an affront to the principles of federalism, which grants the states the power to govern themselves. In pleadings, lawyers for the state have insisted the Justice Department has no business telling the state how to care for Florida’s children.
The appeals court wrote in its order that federalism does not allow the state to break the law or violate the rights of children.
Generally, federal courts cannot order a state to create new programs or set aside large sums of new money. But, the opinion said, “Even if the injunction pressured Florida to seek an appropriation, this would not necessarily violate federalism principles … Nor do inadequate funds excuse a state’s violation of federal law.”
State leaders also have argued that the parents of children with severe disabilities can, and should, be trained to provide medical care at home — including overseeing the use of ventilators — relieving the state of the burden of their care. The state has suggested that even teenaged siblings should be trained to stay home and care for children with breathing and feeding tubes.
The appeals court affirmed Middlebrooks’ finding that such expectations were unrealistic.
“Florida’s crabbed view,” the opinion states, “ignores the realities of life on the ground.”
“Florida’s assertion that trained parents can provide a similar level of care as private duty nurses fundamentally misunderstands the reality that many of these parents face,” the opinion said. “When private duty nurses fail to show up, parents often need to call out of work in order to stay home and care for their children — causing them to lose income and even their jobs.”
Lack of in-home nurses; baby dies
Much of Middlebrooks’ order, and the appeals court ruling that affirms it, concerns the in-home nursing care that parents of children with complex medical needs rely upon. Middlebrooks found that 94% of the children with severe disabilities living with families could not access all of the private duty nursing hours that were approved, leaving gaps in care and children in harm’s way.
“One witness testified regarding a baby who had a (breathing tube) and was supposed to receive 24-hour private duty nursing,” the appeals court ruling said. “Because of (nursing) staffing gaps, the mother was left alone with her baby. According to the witness, the mother left the room to do laundry, and when she returned, the baby had pulled his trach out, causing him to die.
“Another parent described staying awake all night, setting alarms every 15 to 20 minutes, to ensure that her daughter’s trach remains in place and that she is still breathing.”
Lack of in-home nursing causes severe financial stress on families, as well, the appeals court said.
“Parents may miss shifts at work or be forced to give up their jobs,” the opinion said. “The lost income in turn can affect a family’s ability to make rent, therefore placing its members at risk of eviction. For example, one mother testified that due to persistent gaps in (nursing) she was forced to care for her son herself, causing her to miss work, which ultimately reduced her income to such an extent that she lost her home — and her son had to be placed in a nursing home.”
Middlebrooks’ 2023 ruling also sought to improve the work of “care coordinators,” who are tasked with helping parents find ways to either remove their children from institutions, or avoid them in the first place. Several coordinators testified that they had little recourse, other than “calling agencies to try and fill open” nursing shifts.
Care coordinators also testified that higher reimbursement rates for private duty nurses likely would lead to fewer staffing gaps.
When the Justice Department’s lawsuit was filed in 2013, six nursing homes across the state had units devoted to the care of children with complex medical needs. There are currently three, two of them in Broward County. The scarcity of facilities exacerbates the problem of families having to travel sometimes long distances to visit their children with disabilities, the court found, further isolating the kids.
In his dissenting opinion, Judge Brasher argued that, under the guise of keeping children out of institutions, Middlebrooks’ order was really designed to force Florida to improve its overarching system of care for children with disabilities — a reform the courts lack the authority to enforce.
“The government’s attorney made clear that the point of the litigation was to overhaul Florida’s programs … ,” Brasher wrote. “We’re not suing on behalf of an individual. We’re suing to change the policies and practices of the state of Florida.”
As “program-overhauling proposals,” Brasher wrote, the federal government cannot order the state to undertake them.
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