The state of Florida is saying it’s made changes that show its commitment to better healthcare for medically fragile children. On Thursday, it announced a new nursing care program and touted other improvements. But lawyers for families of several disabled children say the changes don’t go far enough.
Medically fragile children depend on equipment like ventilators and feeding tubes to survive. More than 3,000 live in Florida, and they often require round-the-clock nursing care.
Paolo Annino, a lawyer representing several of the children’s families, said, “None of these children chose to be near-drowning victims. None of these children chose to be run over by cars. None of these children chose genetic defects.”
The suit he co-filed makes the same charges against the state that the U.S. Department of Justice made last year in a scathing letter. They say the state is violating federal disability law because more than 200 medically fragile children are living in nursing homes, and many more live at home but struggle to get their nursing care covered by Medicaid. The Americans with Disabilities Act says disabled people must be cared for in the most integrated setting possible, which usually means in their homes.
On Thursday, state Agency for Health Care Administration Secretary Liz Dudek said, the state has addressed these concerns with a new Enhanced Nurse Care Coordination program.
“The program is designed to help empower parents and help them personalize the experience that they have, have somebody that they can go to to find out what’s available to their child,” she said.
Dudek said, nurse care coordinators will also help parents navigate transitions out of nursing homes, should that be what they choose.
Another change she announced is, that the agency has been contacting many parents of children in nursing homes to ask if they’re happy with their care. Only one expressed an interest in bringing their child home, she said.
But Matthew Dietz, the lead lawyer for the children suing the state, said, state records show 34 families wanted their children’s care reevaluated.
“But even those who said they were happy said that they would love their kids to be closer, and some even said in the conversations that they wished they could get enough services to have their children home,” he said.
Dietz also said, the state doesn’t have working phone numbers for 13 families.
And, he said, the changes the state is touting don’t solve another problem: that families caring for their kids at home are repeatedly denied Medicaid coverage for their nursing care, even when doctors prescribe it.
He said, that problem has gotten worse in the past couple of years, ever since the state hired a company called eQHealth, which reviews the requests for care.
“Essentially what they do is attempt to make them as effective as possible with as little resources as possible,” he said.
He said, eQHealth’s annual report showed it had saved the state millions of dollars in cut nursing care hours. And the lawyers say, that leaves many parents feeling they have no choice but to put their kids in an institution.
But the state insists that is their last choice too. David Wilkins heads the Department of Children and Families, which runs the foster care program. He said, after the Department of Justice letter, the number of foster children in nursing homes has dropped by about 40 percent.
“We do not want to have situations where children are having to be housed in skilled nursing facilities,” Wilkins said.
Secretary Dudek said, state agents continue meeting with the federal Justice Department to work through the issues. The DOJ was threatening to sue the state late last year.