Miami Herald: How Florida limits care for disabled kids

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.

Let the article simmer with you a minute. Every attorney and child advocate in Florida should take one or two of these cases. We should make it a short-term goal that no parent ever has to walk into that hearing room alone. The long-term goal: this system has got to go.

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