Broward

Child services

New rules to help Florida parents raise disabled kids at home

 

In an about-face, the state announced a new set of rules that should make it easier for parents to raise severely disabled children at home.

cmarbin@MiamiHerald.com

The girl’s doctor prescribed 24-hour care by a registered nurse for the child. The girl could sustain life-threatening neurological damage in moments if her breathing tube became clogged — which occurred in dramatic fashion at a hearing The Herald covered in December.

The state had agreed to pay for 18 hours of in-home nursing care on weekdays, and fewer on the weekends. The child’s mother appealed.

After the girl’s plight was described in The Herald, Ian Nathanson, a Tampa pediatrician who is associate medical director of eQHealth, agreed to provide the girl’s mother round-the-clock nursing care.

“This child is not at risk anymore,” said Howard Talenfeld, the lawyer for the girl’s mother, who wants to maintain her privacy. Details of the state’s settlement with the family have yet to be ironed out.

“It’s a game-changer,” Talenfeld said of the new policies. “You are dealing with life-saving medical procedures,” he said, and some even well-educated, non-squeamish parents are not capable of performing them. “That was the point of our case, the precise point.”

The changes are contained in a one-page “alert” emailed to private companies that offer private-duty nursing care to families of disabled children, and to the operators of so-called prescribed pediatric extended care centers, which are essentially daycare centers for children with serious medical needs.

The in-home nursing changes were announced the same day The Herald reported that a Miami Gardens nursing home, one of only six that care for children throughout the state, will be closing its pediatric wing and transferring remaining children elsewhere. Several have been reunited with their parents, and four or so are being transferred to medical foster homes. Most of the rest will go to other nursing homes.

“This is good news hopefully for hundreds of people — maybe thousands of people,” said Matthew Dietz, a Miami civil rights attorney who is suing the state over its system of care for disabled children. “It’s huge.”

Dietz said that about 3,000 Florida children now receive at least an hour or more of in-home nursing care so they can remain at home with the parents who love them.

“The parents of these children are currently required to learn how to do services which these nurses are trained to do — on their own children,” Dietz said. “We believe that it was unconscionable to have children’s lives dependent on their own parents’ ability to provide skilled nursing care.

“While we do not know the details of this proposal, if it does not require parents to provide skilled nursing care, it will result in ensuring the safety of thousands of children, and the peace of mind of their parents.”

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