In a drab, cramped conference room in Doral, 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 are held hundreds of times each year in 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 Friday 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.

Senior added: “We need to make sure we are spending our dollars — and they are finite dollars — on the things that provide significant medical benefits to our recipients.”

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.”