Florida’s top healthcare administrator is vowing to keep as many medically fragile children as possible at home with their parents — and to improve the lives of those 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 on Wednesday to help the parents of severely disabled children care for their kids at home. The new policies also are contained in a memo written Tuesday by 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 said Wednesday while appearing before The Tampa Bay Times’ editorial board. Healthcare 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.
An AHCA spokeswoman said Wednesday 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 Garden’s nursing home — against her mother’s emphatic wishes — where she died within 12 hours.
Dudek has insisted in recent weeks that the state has not violated any provisions of the ADA, which requires states to provide care for frail and disabled people in the “least-restrictive” settings, such as family homes. “We have found nothing contrary to the law, at this point,” Dudek told the editorial board.
But both Dudek and the top Tampa Bay-area administrator for the Department of Children & Families also outlined a series of steps to make it easier for frail children to receive care in community settings — and to improve the lives of children who do live in institutions.
Included in AHCA’s “enhanced care” plan for children in nursing homes: Each child will be given a “nurse care coordinator,” who will stay in regular contact with family members and the nursing home’s staff “to receive status updates about he child’s progress.” The coordinators also will help families that want to move their children out of facilities and back home by referring parents to local agencies that can provide in-home care, Senior wrote.
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 their 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 had 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 Wednesday that her agency had found nursing homes with children’s wards that have “warm, nurturing settings,” and take children out on field trips — such as excursions to farms to ride horses.
Dudek dismissed as outdated reports from both The Herald and the Justice Department that many children in nursing homes receive little education or stimulation.
“These reports that they throw somebody in a back room somewhere, where it’s not at all child-based, where they don’t talk to the child, that’s not true at all,” Dudek said.
Records from both AHCA and DCF, however, show both agencies have been concerned about the practice — even in recent months.
As recently as September, when DCF dispatched 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 and few in a common playroom.
“There is an activity board by the nurses’ station that lists daily activities, however, our assessment is that there did not seem to be structured activities at the time we were there,” the Our Kids team wrote in a report.
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 temporarily — 24-hour nursing care to Doris Freyre.
But a court “order” signed on March 30, 2011, by Hillsborough Circuit Judge Vivian T. Corvo says “the child shall be returned to the mother,” and adds: “services are in home from midnight to 7a.m.” — the time frame for which state Medicaid administrators had refused to pay for nursing.
When questioned about the order, Carroll insisted it was more like a recommendation.
“We did not violate a judge’s order,” he said. “The judge asked us to explore getting 24-hour care.”