Florida’s profoundly disabled children won a significant victory last week when a Miami Gardens nursing home began closing down its much-criticized 60-bed pediatric unit. The same day, the state’s Agency for Health Care Administration announced a new set of rules that may make it easier for parents to raise severely disabled children at home — another step in the right direction.
But the state’s reprehensible practice of warehousing “medically fragile” children in nursing homes still continues. It has to stop.
Nursing homes aren’t the place for children with special medical needs. That’s abundantly clear from the troubled record of the Golden Glades Nursing & Rehabilitation Center in Miami Gardens. Two teens, Marie Freyre and Bryan Louzada, have died while under the care of the nursing home, sent there by the state against their parents’ wishes.
After the girl’s death — she died within hours of arriving, after caregivers failed to give her life-saving anti-seizure drugs — the home was fined $300,000 by federal health regulators. But no fine will solve this tragedy.
The U.S. Justice Department’s civil rights division has been all over the issue since September, when it sent a letter threatening to sue Florida on grounds that the state is violating the Americans with Disabilities Act. The state has vigorously disputed the allegation.
The DOJ and children’s advocates have accused the state of cutting in-home care for disabled children so much that parents see institutionalization as the only option. Nursing homes stand to benefit from this because they are paid at a rate of $506 a day to care for medically fragile children, far more than the approximately $213 a day they are paid for elder care. Six nursing homes, including the one in Miami Gardens, are licensed to care for children.
The DOJ also said many of the children in nursing homes — about 220 at the time — receive little stimulation, mostly spending their time in bed or in wheelchairs watching TV. Florida, the DOJ said, “has planned, structured and administered a system of care that has led to the unnecessary separation and isolation of hundreds of children in nursing facilities.”
Yet the state healthcare agency insists that housing the children in nursing homes doesn’t violate federal law, which requires state health regulators to care for those with disabilities in settings that are the least restrictive possible. And it has said the parents of children whose care is paid for by Medicaid, the insurance program for needy and disabled people, decide where the children will live.
But the Justice Department isn’t buying. In December, the DOJ offered a proposed settlement to the state. It would require Florida to take all measures possible to end unnecessary institutionalization of children with disabilities and provide adequate community services for parents who want to raise their children at home.
The new AHCA rules — likely a response to the continuing pressure from the feds — go part of the way toward a fix. The state says it will now pick up the cost for a trained professional to perform complex medical tasks in the home, alleviating the need for many parents to think about institutionalizing their disabled children.
But what about kids still in nursing homes? With the Miami Gardens nursing home shutting its pediatric unit, several of the children have been reunited with their parents. Some will go to medical foster homes. Most, sadly, will end up in other nursing homes. That’s no place for a disabled child.