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.