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State Announces Reforms for Care of Disabled Children

January 11 2013 | WMFE - The state of Florida is saying it has made changes that show its commitment to better health care for medically fragile children. A report from the US Justice Department criticized the state for what it said was "warehousing" disabled children in nursing homes for the elderly. Thursday, the Florida Agency for Health Care Administration announced a new nursing care program and touted other improvements in the care of severely disabled children. But, lawyers for families of several of those children say the reforms 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 is a lawyer representing several of the children’s families in a suit against Florida. “None of these children chose to be near-drowning victims.” Annino says. “None of these children chose to be run over by cars. None of these children chose genetic defects.”

The lawsuit 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, Agency for Heath 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 find out what’s available to their child.”

Dudek says nurse care coordinators will also help parents navigate transitions out of nursing homes, should they choose.

Dudek also announced 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 says. But Matthew Dietz, the lead lawyer for the children suing the state, says 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.”

Dietz also says the state doesn’t have working phone numbers for 13 of the families and, he says, 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 says, 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.”

Deitz says EQHealth’s annual report showed it had saved the state millions of dollars in reduced nursing care hours.

The family’s 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 have to be housed in skilled nursing facilities.” Wilkins said.

Secretary Dudek says state agents continue meeting with the federal Justice Department to work through the issues.



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