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Too many 'medically fragile' children still in nursing homes, attorney tells Senate committee

In light of a Justice Department lawsuit against Florida over the care of disabled children, a Senate committee gathered experts for a status report on the system on Wednesday.

The federal suit, filed in July, stated that Florida health care agencies acted with “deliberate indifference to the suffering” of frail and disabled children by placing them in nursing homes designed to care for elders.

The lawsuit follows months of reporting on the children’s plight by The Miami Herald.

"Our goal is to ensure that children are not in nursing homes for six months, a year, two years, five years," Matthew Dietz, the lead counsel on the class-action suit joined by the federal government, told the Senate's Children Families and Elder Affairs Committee. 

The legislative committee heard testimony from a cross-section of experts on the issue, from advocates to administrators, primarily Elizabeth Dudek, secretary of the Agency for Health Care Administration, and State Surgeon General Dr. John Armstrong.

 “Based on your expertise and your knowledge of the current situation what three things would you need from us to improve the system, whether it be more staff, whether it be a different protocol?” Sen. Alan Hays, R-Umatilla, and the committee's vice chairman, asked Armstrong. “What do you need from us to enable you to have a world-class system or to make the needed improvements that you know intuitively based on your experience needs to be done.”

 “We’re looking for solutions here,” added committee chairman Sen. Eleanor Sobel, D-Hollywood.

"This  conversation, I think, will cause us to reflect even further on how it is the policy makers can enable our continuing progress when it comes to child protection,” Armstrong told the legislators.  

Health care officials said that medically disabled children are cared for in medical foster care homes, hospital-based home care or nursing home facilities.

Dietz said nursing home placement could be a "transition time" but "the practice of instituionalizing children with disabilities for a long term is not in the state's policy. It's not in the state's interest. The policy is to keep the children at home or a homelike environment."

Dudek said it is the parent or guardian who determines where the child is placed. She described "intensive care coordination" in the placement of children, with 1,484 receiving private duty nursing services in the community.

Dietz said there another 1,762 chldren who currently receive care in pediatric extended care services,  and “only 14 percent of those receive any care” at home."

Dudek told the panel she couldn't address some of his comments because the state "is the subject of litigation."

"I can tell you that if Mr. Dietz or anyone in the audience or anyone anywhere is aware of a parent who has a child who is in need of services, who is medically complex whether they're covered by Medicaid or not  they can call me they can call me" or other health officials, Dudek said. "If there's anyone who isn't aware and if Mr. Dietz is aware of those people and hasn't brought us to us, shame on him."

Dietz disputed Dudek and Armstrong's claim that parents understand their options and are often told that "the nursing home is the better place" for their children.