Florida's top health care administrator vows to keep as many medically fragile children at home with parents as possible and to improve the lives of disabled children who remain in nursing homes, amid an outcry over hundreds of children living in institutions designed for frail elders.
Liz Dudek, who heads the state Agency for Health Care Administration, outlined a series of new policies Wednesday to help parents of severely disabled children care for their kids at home. The new steps also are in a memo from Justin Senior, AHCA's deputy secretary for Medicaid, the insurance program for needy and disabled people.
"We want to make sure parents make a choice with the best information they can get," Dudek told the Tampa Bay Times editorial board. Health care administrators have been mired in controversy in recent weeks since the U.S. Justice Department threatened to sue the state, saying the warehousing of disabled children in nursing homes violates the landmark Americans with Disabilities Act.
The agency also was contacted by state lawmakers after the Miami Herald detailed the plight of 14-year-old Marie Freyre, who died in 2011 after child welfare administrators sent her 250 miles from her Tampa home to a Miami Gardens nursing home against her mother's emphatic wishes. The child died within 12 hours.
Dudek has insisted that the state has not violated the ADA, which requires states to care for frail and disabled people in the "least-restrictive" settings, such as family homes.
But Dudek and the top Tampa Bay administrator for the Department of Children and Families outlined steps to make it easier for frail children to get care in community settings, and to improve the lives of children in institutions.
Included in AHCA's "enhanced care" plan for children in nursing homes: Each child will be assigned a "nurse care coordinator" to stay in contact with family members and nursing home staff, and to help families that want to move their children out of facilities and back home by referring parents to local agencies that offer in-home care.
DCF announced last week that foster care caseworkers would need high-level agency approval before placing any dependent child in a nursing home. Of the 20-or-so foster children already living in nursing homes, a memo said, the agency will review their cases monthly to look for ways to return them to birth parents or shift their care to foster homes run by parents with specialized medical training.
Mike Carroll, who heads DCF's Tampa Bay region, said he toured the pediatric wing of a local nursing home and was "very surprised at the quality of care each child was receiving."
Likewise, Dudek said her agency had found nursing homes with children's wards that have "warm, nurturing settings" and take children on field trips, such as horseback-riding excursions.
Dudek dismissed as outdated reports from the Herald and Justice Department data that many children in nursing homes get little education or stimulation. But AHCA and DCF records show both agencies have been concerned about the practice.
In September, when the DCF sent foster care caseworkers to visit dependent children in nursing homes, workers with the private Our Kids agency said children at a Miami Gardens nursing home had no toys in their rooms, few in a common playroom, and a lack of "structured activities."
Carroll, the DCF administrator, defended the state's handling of the Freyre case, saying Marie, who had cerebral palsy and a seizure disorder, was in no way "a poster child" for the plight of children sent to live in nursing homes.
Carroll said twice that a Tampa judge had not ordered the state to return Marie to her mother and provide at least temporary 24-hour nursing care to Doris Freyre.
But a 2011 court order from Hillsborough Circuit Judge Vivian Corvo says "the child shall be returned to the mother" and that "services are in home from midnight to 7 a.m.," the time frame for which state Medicaid administrators had refused to pay for nursing.
"We did not violate a judge's order," Carroll said. "The judge asked us to explore getting 24-hour care."