Federal judge could change the way Florida treats kids with complex medical needs

WEST PALM BEACH — Bruised from a recent blow in federal court, attorneys for the state of Florida are warning against what they describe as an attempted “federal takeover” by the U.S. Department of Justice.

The issue stems from a fundamental disagreement over how the state treats, houses and funds the care of children with disabilities. The DOJ sued Florida in 2013 for keeping kids in nursing homes against the wishes of their parents — a handful of whom testified during a two-week bench trial in West Palm Beach last month.

State health administrators have argued since the lawsuit’s inception that the litigation is a threat to state sovereignty, but a federal judge seems poised to disagree. Moved by “horrific” stories of isolation and endless institutionalization, U.S. District Judge Donald Middlebrooks ordered attorneys on May 19 to propose remedies to Florida's problematic pediatric nursing homes.

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Florida’s attorneys redoubled their warning of federal overreach Monday in response to the government’s proposed order, promising “years of federal domination” if Middlebrooks adopts the DOJ’s proposal.

The proposal focuses on increasing families’ access to in-home nursing services, but Florida’s lawyers say the remedies would “accomplish nothing.” Andy Bardos, one of several attorneys representing the state, called the proposal vague, unachievable and designed to ensure the state’s failure.

The DOJ has until Tuesday to respond to the state’s complaints. In the meantime, 140 children remain in nursing homes across the state, their fate now in Middlebrooks’ hands.

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Attorneys for the Justice Department say Florida discriminates against kids with disabilities by institutionalizing them instead of providing services to keep them at home and in their communities.

The U.S. Supreme Court deemed it a violation of the Americans With Disabilities Act of 1990 to force people with disabilities to live in institutions. The DOJ says that in spite of that, the state agency that oversees home health services has erected barriers that leave families no choice but to sign off on "prolonged and unnecessary" stays in nursing facilities.

“Families may have been told by the hospital that the facility was going to be a bridge to home,” said Dr. Mary Ehlenbach on the last day of the trial. “In fact, the nursing facility was a bridge to nowhere.”

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Expert witnesses who testified on behalf of the state told Middlebrooks that many of these children are too medically infirm to return home. Dr. Allan Greissman, a critical care pediatrician at Joe DiMaggio Children’s Hospital in Hollywood, said some are too neurologically disabled to enjoy the comfort of living with family anyway.

Ehlenbach, medical director of the Pediatric Complex Care Program at the University of Wisconsin, disagreed.

She told the judge that nurses at medical facilities don’t have a higher level of training than those who perform in-house care, and their equipment isn’t necessarily better, either. While touring Kidz Korner, a pediatric nursing home in Plantation, the doctor said she saw older-model ventilators than the equipment her own patients have set up in their homes.

She listed the dangers associated with living in a nursing facility, the first of which she said was made painfully apparent during the COVID-19 pandemic: the spread of infectious disease; pressure wounds on the bodies of children in one place for too long, medical devices breaking down their soft tissue; medication shortages and accidental mix-ups; psychological harm.

“Even under the best of intentions, a nursing facility simply is not a home,” Ehlenbach said.

DOJ lawyers said institutionalized children may spend hours each day alone in their rooms. Others spend time in shared rooms, watching cartoons or doing nothing at all. Some are kept in crib-sized enclosures for much of the day, allowed out for 30-minute breaks at a time. Many are institutionalized hundreds of miles from their families, left to bond instead with the shift-based employees who care for them.

More than 100 institutionalized children currently live in segregated, institutional nursing facilities in Florida, including young adults who entered the facilities as children and have remained there past the age of 21.

According to The Miami Herald, there are three pediatric nursing homes in Florida: Children’s Comprehensive Care Center in Pompano Beach; The Kidz Korner in Plantation; and Sabal Palms Health & Rehabilitation in Largo, a city in Pinellas County.

Much of the trial’s testimony concerned the state shortage of private-duty nursing, which Middlebrooks later called the “most glaring problem.” Without the resources to care for their children at home, many parents have no choice but to keep them institutionalized.

The DOJ's proposed order seeks to remedy this by making Florida’s Agency for Health Care Administration play a more active and transparent role in children's transition out of nursing facilities. It suggests Florida should increase the pay for private duty nurses to draw more people to the profession; ensure that all children authorized for private-duty nursing receive at least 90% of their authorized hours; and collect data on the services provided to children with complex medical needs.

Bardos called the proposal "fatally flawed," deeming the 90% threshold arbitrary and unsupported by evidence presented at trial. He argued that the private-duty nursing shortage is a nationwide problem not within the state's control.

"Florida is not omnipotent," he wrote. "It does not sit at a control panel, pulling levers and pushing buttons to select outcomes. It has no magic wand to wave."

He urged the judge to reject the DOJ's proposed order, deriding what he called the Justice Department's modus operandi: "Smothering injunctions that place state and local government entities in never-ending subjection to federal control."

Hannah Phillips is a journalist covering public safety and criminal justice at The Palm Beach Post. You can reach her at hphillips@pbpost.com.

This article originally appeared on Palm Beach Post: Florida warns of 'federal takeover' after civil rights case against DOJ