MIAMI — The battle of wills between Florida health administrators and a federal court judge intensified this week as U.S. District Judge Donald M. Middlebrooks accused the state of obstructing his efforts to free medically fragile children from segregated institutions, where many have spent their entire lives.

Late last week, the Florida Agency for Health Care Administration asked Middlebrooks to stay an injunction he signed a week earlier requiring the state to reform its system of care for 2,750 children with medical complexities. The linchpin of Middlebrooks’ plan is a requirement that the state ensure such children receive at least 90% of the at-home nursing care prescribed by their doctors.

The injunction capped a two-week trial in May — and a 12-year litigation Middlebrooks repeatedly has castigated as shameful — over claims by the U.S. Justice Department that Florida is violating the Americans with Disabilities Act by steering children with severe disabilities into nursing homes. Virtually all of the youngsters, Middlebrooks wrote, could be safely cared for at home with sufficient help from the state.

The litigation, filed by the DOJ’s civil rights division, primarily concerns the plight of 140 children who are so frail that most require feeding and breathing tubes to sustain them. Another 1,800 youngsters, the DOJ said, are at risk of being institutionalized.

What binds the children together is their reliance on round-the-clock nursing care, plus the medical equipment that keeps them alive. Federal civil rights laws require that people with disabilities be allowed to live and receive care in the least-restrictive settings, such as family homes. But Florida health regulators instead have left families with little choice but to leave their children in institutions by making it extremely difficult for parents to access adequate private-duty nursing, Middlebrooks wrote.

A total of 2,750 children in Florida require constant nursing care, Middlebrooks wrote, and parents have complained bitterly for years that low reimbursement rates under Medicaid, the state’s insurer of last resort for those who are impoverished and Floridians with disabilities, have made in-home care difficult to access.

The judge said he would appoint a court monitor to oversee the state’s compliance with his orders.

Lawyers for the state argued last week that Middlebrooks’ actions amounted to a “takeover” of the state’s health care administration by the federal government.

AHCA lawyers said it would be “impossible” for the state to comply with Middlebrooks’ injunction. And doing so, the state said, would force health administrators to redirect scarce health dollars from other deserving groups.

“Beyond the shadow of a doubt, the state will violate the injunction through no fault of its own, and despite its best efforts, because the provision of 90% of (private-duty nursing) hours to 2,750 children in the midst of a nursing shortage is simply impossible.” the state argued.

On Tuesday, Middlebrooks fired back, accusing the state of dragging its heels deliberately for more than a decade rather than helping some of the most fragile children in the state.

“Over its 12-year history, this case has devolved into obstruction for obstruction’s sake, without regard to the consequences for these children with medical complexity and their families,” Middlebrooks wrote in an order that appears more heated than previous statements from the judge.

“My order directs the state to accomplish that which is required by federal and state law, as well as that which it has expressly contracted with managed-care organizations to provide,” Middlebrooks added. “There is no basis or reason for a stay.”

Historically, Florida has maintained one of the most cash-starved systems of care in the nation for people with physical and intellectual disabilities. And the few reforms achieved over the past 30 years have required the help of federal judges.

According to a 2019 report issued by the state Agency for Persons with Disabilities: “Florida has been extremely frugal on spending on individuals with disabilities, ranking 50th out of 51 in the nation (including the District of Columbia) in total fiscal effort.” For people with disabilities who live in group homes as opposed to institutions, the state ranked 46th, the report said.

Another federal judge, the now-deceased Wilkie D. Ferguson, who presided in Fort Lauderdale, ordered sweeping reforms that, at the time, helped transform the state’s care for people with disabilities. In 1996, Ferguson ruled it was unconstitutional for the state to require Floridians with disabilities to wait years for needed care. Ferguson held state disability administrators in contempt for “willfully” withholding services to about 23,000 people who had been on waitlists for more than seven years.

Ferguson fined the state $10,000-per-day for ignoring his 1996 order to begin providing care to long-waitlisted Floridians. The fines were reversed on appeal. But the substance of Ferguson’s orders stood, and by 2001, lawmakers had increased funding for people with disabilities by about $300 million, enabling the state to eliminate the decades-long waitlist.

Since then, the state has re-established its policy of requiring Floridians eligible for care to wait years, sometimes decades, for community care. Currently, about 22,000 Floridians with disabilities are awaiting care and services in their communities.

“These children deserve better, as do those whose taxes are already paying for these services,” Middlebrooks wrote of the medically complex children at the center of the current litigation. “I caution the state against foot-dragging in complying with the injunction. This issue is too important. And for the families involved, the stakes are too high.”

As to the argument that it lacks money to provide 90% of the nursing care doctors order, Middlebrooks reminded the state that it is already paying its managed-care organizations to deliver 100% of what doctors prescribe — a contractual requirement the state has never enforced.

“The premise of my order is that the state should enforce its contracts, collect the information necessary to do so, and require accountability on the part of the managed-care organizations,” the judge wrote.

“I am not persuaded that Florida will suffer irreparable damage without a stay, but I am firmly convinced that if compliance with the injunction is delayed, the institutionalized children, and those at risk of imminent institutionalization, will suffer substantial harm. The public interest would not be served by issuing the stay.”

© 2023 Miami Herald
Distributed by Tribune Content Agency, LLC

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