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How Florida limits care for its most medically fragile kids

A mother cares for her disabled child during a hearing in South Florida to get more in-home nursing care for her daughter.
A mother cares for her disabled child during a hearing in South Florida to get more in-home nursing care for her daughter.
Published Jan. 4, 2013

In a drab, cramped conference room in South Florida, a 45-year-old single mother is fighting with the state to secure in-home nursing care for her severely disabled daughter — while the 10-year-old fights for her life.

The mother sits across a wooden table from a state hearing officer who will decide whether health regulators were right to insist she get 18 hours each weekday of nursing care for her daughter, and fewer on the weekends, instead of the 24 hours her daughter's pediatrician says are necessary. As her expert witness — a registered nurse — testifies, the woman's daughter begins to cough, then vomit, then struggle for breath as her breathing tube becomes clogged. The hearing stops as the child's mother and the nurse suction the girl's tube, then clean, change and console her.

Generally lacking in such drama, hearings like the one that occurred Dec. 14 in Doral are held hundreds of times each year around Florida as the parents of severely disabled and medically fragile children battle state health administrators for nursing care and services for their children. Without such care, some of the youngsters will end up in nursing homes, something the 10-year-old's mother is trying to avoid.

"I think about it often," the mother says, under questioning from her attorney, Howard Talenfeld. "I'm very concerned."

In September, the U.S. Justice Department said the state had "planned, structured and administered a system of care that has led to the unnecessary segregation and isolation of children, often for many years," in geriatric nursing homes. Children in such homes often spend their days in virtual seclusion, lying in bed or watching television, the civil rights division wrote.

Rationing care

Florida has consigned hundreds of children to such a plight, the Justice Department wrote, by "reducing or eliminating the availability of in-home services that had been prescribed as medically necessary by a child's physician, without reasonably considering the child's actual needs."

State and federal lawyers are still negotiating over the federal government's insistence that Florida sign an agreement to redesign the state's program and allow a federal judge to oversee the state's effort.

Justin Senior, the Agency for Health Care Administration's deputy secretary for Medicaid, said last week the overwhelming majority of pediatric in-home nursing claims end amicably with the child's family doctor and state reviewers in agreement over the care that is needed.

"The long and the short of it is we always make sure the child and the family get the services they need — and err on the side of caution," he said.

In a deposition last February, the associate medical director of Louisiana-based eQHealth Solutions, which reviews such claims under contract with the state, acknowledged what truly undergirds the state's pediatric private duty nursing program: rationing.

"There are many children who require services in the state of Florida," pediatrician Ian Nathanson said. "There are many requests for services. And there are, in my view, just not enough resources to provide for every single child and every single request."

"It's just a fact of life," Nathanson added.

Hand on the scalpel

Florida separates the winners from losers by declaring what services are "medically necessary" to a child's survival. Health administrators insist the state cannot afford to pay tens of millions of taxpayer dollars for the "convenience" of caregivers who have chosen to raise their frail and disabled children at home.

Florida children's advocates, and the Justice Department, say AHCA, which oversees the Medicaid insurance program for needy and disabled people, uses "medical necessity" as a scalpel to cut services to families — forcing many of them to turn to nursing homes. The homes are paid from a funding pot that is a federal entitlement.

AHCA administrators characterize their medical-necessity determinations as objective. But records and interviews suggest the agency has exercised significant influence over the volume of services that are cut.

During the budget quarter that ended Sept. 30, 2011, 55.9 percent of in-home nursing claims were rejected, at least in part, records show.

The next quarter, the percentage of reviews that were denied dropped to 38 percent.

What had changed?

In February or March of this year, AHCA Secretary Liz Dudek said, agency heads "set very clear standards" with the associate medical director of the company that reviews nursing claims for the state. Too many claims were being denied, Dudek said, even though the status of the child had not changed between review periods.

By September — the month the Justice Department accused the state of violating the civil rights of disabled people — denials had been reduced to 19 percent.

Between July 1, 2011, and June 30, 2012, AHCA's private service reviewer, eQHealth, estimated it had saved the state $44.8 million by cutting private duty nursing and other caregiving hours, according to the company's annual report.

A chunk of the savings, records suggest, arose from the state's decision to declare, as a statewide rule, that parents require no more than eight hours each day for sleeping and grooming. Previously, AHCA allowed nine hours of nursing care so parents could sleep.

"If a family requires sleep, or claims they're required to sleep," Nathanson said in a deposition, a state Medicaid handbook "provides some guides as to how many hours can be approved for sleep." Many families lost at least one hour of care when Nathanson suggested that recent studies show adults do not require more than eight hours sleep.

Since federal civil rights lawyers accused the state of warehousing disabled children, Dudek, AHCA's chief, has held news conferences and visited editorial boards insisting the state will pay for unlimited in-home nursing care for parents with medically complex children.

"The state believes strongly that individuals, especially Florida's most medically fragile children, deserve to be cared for in the least restrictive setting that can best serve their medical needs," Dudek said in a statement Nov. 30. "Children can receive medically necessary services in their homes in unlimited amounts and duration, up to 24 hours per day, 7 days per week."

15-year-old caregiver

Underlying state policy is the belief that virtually anybody — including other children — can be taught the skills of a professional nurse. Florida's Medicaid Handbook, which articulates state policy, allows the state to decrease nursing hours for disabled children "as parents and caregivers are taught skills to care for their child."

Under the policy, caregivers can be teenage children and elderly grandparents — who are being asked to oversee ventilators, suction trachs and use feeding tubes.

Elizabeth Fauerbach of Countrywalk is one such parent. Her 18-year-old son, Tyler, was born with a terrible stew of medical conditions and disabilities, including cerebral palsy, developmental disabilities, chronic lung disease, reflux, blindness and a seizure disorder. Tyler is fed with a tube attached to his stomach; since 2006, he has breathed with a ventilator.

Fauerbach and her husband have raised Tyler at home his whole life.

But each year, keeping Tyler at home has become more difficult;

In a recent review, eQHealth reduced the number of daily nursing hours prescribed by his pediatrician from eight to zero, Fauerbach wrote. Fauerbach appealed the reduction, and when state Medicaid administrators interviewed her in preparation for a hearing, they asked her why her then-15-year-old daughter could not become Tyler's caregiver, she said.

Mom in 'panic'

The state's method for evaluating medical necessity was explored at length in a February deposition, and, later, in Nathanson's testimony this month, in the appeal of the 10-year-old girl with a tracheostomy tube. The Herald is not naming the child or her mother at the family's request.

The girl was born with a rare genetic disorder, called Marshall-Smith Syndrome, which is often fatal in early childhood as it involves sometimes severe respiratory impairments. Since her birth, the girl has endured 21 surgeries to correct deformities of her facial bone structure.

The girl's doctor prescribed 24-hour registered nursing care for the child, who could sustain life-threatening neurological damage in moments if her breathing tube became clogged. The state agreed to pay for 18 on weekdays, and fewer on the weekends. This year, the mother was among 1,336 parents appealing cuts to home caregiving. At the Dec. 14 hearing, Nathanson testified that the girl did not require additional care and that any other nursing hours would be for the "convenience" of the mother.

Under questioning by attorney Talenfeld, Nathanson acknowledged that no one with his company had ever examined the girl, read her medical records or even explored whether the mother had the skills to take care of a medically fragile child with a breathing tube.

"You've never laid eyes on (the girl), have you?" Talenfeld asked. "That's correct," Nathanson answered.

It wasn't until the girl's mother testified at the hearing that Nathanson learned she was terrified that her daughter would perish in her care and that on the rare occasions the girl's breathing tube malfunctioned without a nurse present, the mom was in "panic."

"You're concerned?" Talenfeld asked him.

"Yes," Nathanson conceded. "I'm concerned."

The hearing officer, Rafael Centurion, who works for the Department of Children and Families, has yet to rule.