Florida healthcare administrators will visit hundreds of medically fragile children living in geriatric nursing homes, and speak with their parents, to determine whether families are being forced to abandon their youngsters in institutions, as federal civil rights lawyers are claiming.
Almost a week after the U.S. Justice Department’s Civil Rights Division released a grim report that accused the state of warehousing sick and disabled children in adult nursing homes, the leaders of two state health agencies insisted the state was in “full compliance” with federal laws that require governments to house and treat disabled people in community settings, whenever possible.
Liz Dudek, the secretary of the state Agency for Health Care Administration, or AHCA, said she had instructed her staff this week to speak with “every parent” of a child who lives in a Florida nursing home to determine whether living in an institution “is the best decision for their child.”
“Everyone, including this fragile population, deserves to be cared for with the least restricted means,” Dudek told reporters from throughout the state in an afternoon news conference. “That’s where we want children to be.”
Last week, the Justice Department sent a scathing, 22-page letter to Florida Attorney Pam Bondi, saying state health regulators were in violation of the federal Americans with Disabilities Act, a 1990 law designed to protect frail and disabled people from being warehoused in large, isolated institutions.
“Many children entering nursing facilities in the state are unnecessarily separated from their families and communities for years,” Assistant Attorney General Thomas E. Perez wrote in the letter. “With adequate services and supports, these children could live at home with their families or in other more integrated community settings.”
“The state has planned, structured and administered a system of care that has led to unnecessary segregation and isolation of children, often for many years, in nursing facilities,” Perez wrote, adding that many such children are denied an education and sometimes are left for hours in front of televisions or in nursing home hallways without activities or therapy. Even infants and toddlers live in geriatric nursing homes, Perez wrote, and some youngsters essentially grow up in a hospital bed.
Perez said the civil rights division would consider suing the state if health administrators don’t do more to allow sick and disabled children to receive care at home or in communities.
Though the state has not yet replied to the federal report, both Dudek and state Surgeon General John Armstrong, who heads the Department of Health, said they do not plan any changes to state policy.
“I believe we are already in compliance, and that will be our response,” Dudek said.
In all, about 221 children with medical complexities are living in nursing homes, Armstrong said, and the federal report suggests most of them are living in the urban areas of Miami, Fort Lauderdale, Tampa, St. Petersburg and Orlando. While the severity of the children’s conditions varies, more than 80 percent are fed through tubes, and a third are dependent on ventilators, Armstrong said.
On average, nursing homes are paid about $500 per day to care for children — a rate that exceeds what they’re paid to care for elders, the federal report said.
Both Dudek and Armstrong insisted that no parents are forced to place their children in a nursing home — remarks that are similar to statements made earlier in the week by Gov. Rick Scott. All the state officials said the program that pays the bills for medically complex and disabled children evaluates the needs of each child individually, and designs a plan of care to meet those needs.
“If there’s a medically needed service, it gets provided,” said Dudek.
In an interview with The Miami Herald Monday, Scott said: “Here’s what’s important to me: that parents make the choice. They should be the ones that make the decision about this.”
The Justice Department, however, insisted in its report that parents have been denied meaningful choice because the nursing care and other services provided to their children have been cut so dramatically that many parents can no longer cope with their youngsters’ medical needs. “We learned of many instances,” the report said, “of the state reducing or limiting the availability of in-home services that had been prescribed as medically necessary by a child’s physician, without reasonably considering the child’s actual needs.”
When asked what percentage of parents who care for their frail children at home have had their child’s care cut or reduced, Dudek said she did not know, and would provide the numbers later.
Dudek denied additional claims in the federal report: that other states have been far more successful in maintaining sick children in their own homes or other community settings, and that children in nursing homes often do not receive an adequate education, among others.
Last week, AHCA administrators expressed dismay at the Justice Department for the way in which it released the report. DOJ lawyers, the agency said, posted the report on a Justice Department website without first consulting with the state, or allowing agency heads to review all the documents that led to the report, such as transcripts of interviews with parents and inspection reports. Perez’s report, though, followed by several months the filing of a class-action lawsuit challenging the state’s policies and seeking an increase in funding so that parents can bring their children home — or avoid moving them to a nursing home to begin with.