Health Care

With court ruling, Florida may be forced to defend putting sick kids in institutions

Marie Freyre swims in the pool with her mother, Doris Freyre. Marie, 14, died after being sent to a nursing home in Miami.
Marie Freyre swims in the pool with her mother, Doris Freyre. Marie, 14, died after being sent to a nursing home in Miami. Family photo

Florida health administrators may be forced to defend in court their long-controversial policy of institutionalizing frail and disabled children in nursing homes — an approach that federal civil rights lawyers have condemned as cruel and unwarranted discrimination against some of the state’s sickest citizens.

An Atlanta appeals court ruled this week that the U.S. Department of Justice may proceed with a lawsuit alleging Florida systematically discriminates against severely disabled and medically complex children by leaving them no choice but to live in institutions — in violation of the federal Americans with Disabilities Act, and other laws.

The Justice Department sued Florida health administrators in 2013, accusing the state of “unnecessarily institutionalizing hundreds of children with disabilities in nursing homes.” Records in the lawsuit show that children in three such nursing homes rarely left their beds, and were likely to experience social, emotional, intellectual and developmental impairments as a consequence.

In its opinion Tuesday, the 11th U.S. Circuit Court of Appeals reversed a 2016 ruling by a Fort Lauderdale judge, U.S. District Judge William Zloch, who said the ADA, the landmark civil rights law signed by then-President George Bush in 1990, contained no provisions allowing the federal government to enforce it.

“Florida may have valid complaints about this lawsuit, but whether it is amenable to suit by the United States is not one of them,” the three-judge panel’s opinion said.

State health administrators declined to discuss the opinion. In a prepared statement, the Agency for Health Care Administration’s secretary, Mary Mayhew, wrote: “Our agency takes very seriously our commitment to serving children with complex medical needs.

“Working with the child’s parents, care coordinators, their health plan and other providers involved in their care, our agency works to ensure that children are in the best environment to promote their health and well-being. The agency is evaluating our legal options concerning this most recent opinion.”

The federal government has no authority under the ADA to sue the state, lawyers for the state said in court pleadings. In essence, the state argued that federal civil rights lawyers had no right to tell Florida how to care for its disabled citizens.

“The federal government has hauled a state into court over questions that go to the heart of ts sovereignty: the weighing of competing healthcare policies,” lawyers for the state argued.

For years, Florida has housed some of the state’s most fragile children — including infants and toddlers — in nursing homes designed to care for elders. Florida doesn’t require children to live in such institutions. But the state has rationed community-based nursing care and other services that might enable kids to live in less-restrictive settings to such an extent that nursing homes became the only real alternative.

Some children have died in nursing homes, including 14-year-old Marie Freyre, whom Tampa child welfare administrators moved into a Miami Gardens home despite her mother’s strong objections. The home was fined $300,000 for its role in Marie’s death, the result of a seizure. Records showed the teen died of a heart attack after nurses failed to administer life-saving, anti-seizure drugs in the hours before she died.

Child protection workers had argued in court that Doris Freyre was herself too disabled to adequately care for her daughter. But Marie had lived with her mother her entire life before the state took her.

The Justice Department contends that children don’t belong in institutions, and that they suffer socially, educationally and developmentally from being isolated from their families and peers. Indeed, federal law requires that people with disabilities be allowed to live in community settings, and not in segregated institutions, whenever possible.

Marie Freyre at home, in her wheelchair. Family photo

“It has been known for at least a century that children raised in institutions — that is, large, congregate settings offering non-parental care with rotating shifts of caregivers — experience developmental outcomes that are poorer compared to children raised in families,” Charles Nelson, a professor of Pediatrics and Neuroscience at Harvard Medical School who is one of the foremost experts on children who live in such places, wrote in 2016.

Nelson was hired by the Justice Department to visit and evaluate three nursing homes that house disabled children across the state. In his report, he said “it would not be unusual” to see workers oversee as many as a dozen to 15 kids on their shift, and added, “This is problematic because it means that the amount of time a caregiver can spend with a given child is limited.

“This is particularly problematic when it comes to children with special needs, as such children require more individualized and intensive care,” Nelson said.

Caregivers in institutions rotate shifts, and they are subject to high turnover, Nelson wrote. “This will impede a child’s ability to form a deep, lasting relationship to any one caregiver.”

Nelson made two visits each to the children in the three nursing homes. He described youngsters who “spent most of their time in bed, some with TV monitors to look at, others without...As a rule, the children’s aides were rarely in the room with the child unless the child needed medical attention or was taking part in some programmed activity.”

“What was common across all three institutions,” Nelson wrote, “was a profound sense of social isolation.”

At one Pompano Beach facility, for example, a “classroom” activity consisted of children watching a movie: “Many children had their eyes closed, some were looking at the floor, but none seemed overtly connected to the activity that was taking place,” Nelson wrote.

At a nursing home in Plantation, Nelson wrote, “I did not observe any classroom instruction taking place.” A “small number” of children went to school by bus, he added.

And at a Largo nursing home, Nelson said “the majority of children were in bed, and most beds had small TV monitors playing cartoons.”

Nelson described one 16-year-old he encountered at the home whom he “found in his crib, completely hidden under his blanket, left entirely alone.”

Living in such institutional settings is harmful to children in myriad ways, Nelson wrote: They cannot form meaningful relationships, or learn to trust adults. They can suffer severe cognitive setbacks, with research showing institutionalized children show “a marked reduction in IQ.” They can’t form friendships. They are at greater risk of mental illness, including depression, anxiety and even psychosis.

“The vast majority of children residing in the institutions I visited are being psychologically harmed,” Nelson wrote. He added: “The children I observed would have better developmental outcomes if they were not being reared in an institution.”

The state Agency for Health Care Administration, the target of the Justice Department’s suit, criticized Nelson and the federal government’s other expert for failing to specify how each of the 172 children then in nursing homes was hurt by institutionalization.

“Some [of the children] have loving and committed parents who made the impossibly difficult decision to place their medically complex children in nursing facilities, but who continue to love their children and visit them regularly,” the state argued in one court pleading.

“Other children have been abused, neglected or abandoned, and entered the nursing facilities with profound cognitive deficits, physical disabilities and behavioral abnormalities.”

Carol Marbin Miller is the Herald’s senior investigative reporter. Carol grew up in North Miami Beach, and holds degrees from Florida State University and the Columbia University Graduate School of Journalism. She has written about children, elders and people with disabilities for more than 20 years.