A federal judge has delivered a stunning rebuke to Florida health administrators, ruling that the state’s long-standing failure to provide adequate care to children with complex medical needs has resulted in the “tragic” and illegal warehousing of fragile children in institutions.
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,” wrote U.S. District Judge Donald M. Middlebrooks. Because so many of the children require constant care, parents are forced to leave them in nursing homes, where some spend their entire lives.
Middlebrooks ordered a series of remedies designed to allow parents to remove their children from institutions — and make it easier to keep their children at home if they are already there.
The state, Middlebrooks wrote, “is violating the rights of children with medical complexity who rely upon the provision of vital Medicaid services and are trying, in vain, to avoid growing up in nursing homes.” Medicaid is the state’s insurer of last resort for impoverished and disabled Floridians and underwrites the care for virtually all medically complex children, whose medical expenses can cost millions.
Because “the state has refused to engage in efforts to craft any meaningful solutions,” Middlebrooks said he would appoint a court monitor to oversee Florida’s compliance with his order and issue reports every two months.
In his searing 79-page order, Middlebrooks recounted the harrowing experiences of several families that testified during the trial, which ran from May 8 through May 19, including the testimony of a 19-year-old woman who spent four years at Kidz Korner, the pediatric wing of a Plantation nursing home.
The woman, Jade Quinones, told the judge she felt lonely and isolated at the facility, that caregivers failed to ensure she remained clean and sanitary, and about “the fear and panic she felt when her trach became dislodged and she waited for someone to help, because without it she cannot breathe,” the judge wrote.
While at the nursing home, “my depression got so bad that I wanted to fall asleep and not wake up,” Quinones testified. “But since being at home, it hasn’t been like that.”
In his order, Middlebrooks wrote: “The difficulties facing the children and parents in this case are heart wrenching. The parents’ love for their children is palpable, and their actions are heroic; they jeopardize their own health, employment, and time with their other children in order to care for their medically fragile child in their home.”
“These children deserve equality and freedom from isolation, both as a matter of right and conscience.”
Middlebrooks was the third federal judge to preside in a decade-long litigation over the state’s system of care for some of the most severely disabled children in Florida. About 140 medically fragile children live in nursing homes; another 1,800 youngsters are at risk of the same fate.
Such children represent less than one percent of the population of pediatric patients, Middlebrooks’ order said. But their care can encompass an enormously outsized portion of healthcare expenses.
In his order, Middlebrooks called “overwhelming” the “evidence of Florida’s failings in administering” medical care to such children, many of whom can be fed only through tubes connected to their stomachs, and breathe with the aid of tubes and ventilators.
A spokeswoman for the Agency for Health Care Administration, which oversees the state Medicaid program, said Florida “intends to immediately seek a stay and 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 parents’ wishes is unsupported and refuted by the evidence presented at trial,” said Bailey Smith.
“During the trial, witnesses testified that their medically complex children were in nursing homes for various reasons unrelated to the state or its policies,” she added.
At trial, the state offered testimony from a Broward County pediatrician who argued that many of the children currently in institutions could not be safely transitioned to a community setting because their parents’ homes were too small and lacked adequate medical equipment, and because the parents weren’t capable of providing the kind of care nursing homes offer. Middlebrooks said such “reasoning is flawed,” because such obstacles “often [were] within the state’s control.”
In a letter to his students Monday, one of the two Florida law school professors who initiated the litigation more than a decade ago said that while Middlebrooks’ order was a victory for people with disabilities and their advocates, much work was left to be done to ensure health administrators made the necessary changes.
“After 12 years, medically fragile children have hope that the door of the nursing facilities will be open for them to leave and that they will receive their doctor-prescribed services,” wrote Paolo Annino, who oversees the Public Interest Law Center at Florida State University’s College of Law.
“Medically fragile children will not be able to walk out of the nursing homes by themselves. They will need Florida children’s advocates to make sure this order is enforced.”
Under federal laws, such as the landmark Americans with Disabilities Act, signed by then-President George H.W. Bush in 1990, people with disabilities are entitled to live in family homes or other community settings whenever possible. But Florida health administrators and the managed-care organizations with which they contract made it nearly impossible for parents to access necessary care and services outside of institutions, Middlebrooks wrote.
The judge ordered that Florida health regulators begin to correct the discrimination “immediately”: “The children involved are among society’s most vulnerable,” he wrote. The judge called tragic the fact that three children who had been part of the litigation over the youngsters’ rights died before the case was resolved.
At the center of the dispute is the provision of in-home nursing care to Floridians who rely on Medicaid to pay their medical bills. In his order, Middlebrooks said that low reimbursement rates, together with poor state oversight of managed-care providers, made it difficult for most families to access sufficient in-home nursing, even when the managed-care plans authorized it.
Testimony presented at a trial showed that only 6.5% of Florida children with medical complexity were able to access all of the private-duty nursing hours they were prescribed. That amounted to only 128 out of 1,956 children included in a review of state Medicaid data.
Moreover, a witness for the U.S. Justice Department, which took up the cause, reported that there were few “indications that the state was actively trying to address” the shortage of private-duty nursing, the order said.
In an 11-page injunction, Middlebrooks ordered health administrators to provide fragile children the private duty nursing that is “minimally necessary” for them to live in the community. To avoid lapses in oversight that allow nursing shortages to continue, the judge also ordered the state to implement a data collection system that allows families to report “provider failures” in real time, and for the monitor to analyze compliance.
“The lack of access to [private-duty nursing] was by far the most glaring and critical problem facing families with medically complex children,” Middlebrooks wrote. “Most families are receiving nowhere near the number of hours they require. And the state’s remarkably inadequate system of data collection renders it unable to even meaningfully diagnose the problem, much less solve it.”
To improve access to in-home nursing, Middlebrooks suggested — but did not order — that the state consider increasing the reimbursement rate for private-duty nurses, both for children enrolled in managed care plans and those whose care is provided on a fee-for-service basis.
“If the state elects not to utilize any of these tools,” the judge wrote, then it cannot later claim that it was unable to cease discriminating against fragile children because the solution was “outside of its control or impracticable.”
During the course of the 10-year litigation and trial, lawyers for the state Agency for Health Care Administration, or AHCA, argued that it was not responsible for the state’s failures to provide adequate care to severely disabled children. Such failures belonged to the managed-care companies that contract with the state, they contended.
Middlebrooks said such excuses were without merit. “States cannot avoid…liability by contracting away their duty to provide services,” Middlebrooks wrote. “In other words, states may not discriminate indirectly more than they may do so directly.”
Middlebrooks also accused health administrators of erecting roadblocks for parents seeking to keep their disabled children at home — and then citing the roadblocks as reasons why the state can’t fix the problem. “The lack of [private-duty nursing] and medical equipment were only ‘barriers,’” the judge wrote, “because of the state’s failure to provide” them.
Those who are institutionalized are spending months, and sometimes years, of their youth isolated from family and the outside world. They don’t need to be there,” Middlebrooks wrote. “If provided adequate services, most of these children could thrive in their own homes, nurtured by their own families.”
“The state of Florida,” the judge wrote, “must remedy this problem and must do so immediately.”
