The last hours of Marie Freyre's short life were torturous. She suffered from cerebral palsy, seizures and a permanently displaced hip that could cause her excruciating pain. The 14-year-old could not speak. But her screams were well documented when, over her family's vehement objections, Marie was taken from Tampa General Hospital, strapped onto a stretcher and driven to a South Florida nursing home 250 miles away without food, water or her life-saving antiseizure medicines. Less than 14 hours after admission to the nursing home, Marie was dead. • This death cannot be seen as an unfortunate accident. A detailed review of her case by the Miami Herald lays bare that her life was taken by Florida's bureaucratic negligence. Marie, like other disabled and sick children in the state, was a victim of Florida's unconscionable decision to warehouse medically fragile children in nursing homes while refusing to cover the sometimes lower costs of at-home services that could keep children with their families.
Florida's Agency for Health Care Administration is failing in its basic duty to protect children, and AHCA Secretary Liz Dudek's explanation to legislators last week was unconvincing. The U.S. Justice Department wants the state to end its preference for nursing home placements and is threatening to sue. AHCA is resisting, claiming that institutional homes offer "a safe, secure and enriching environment for children." AHCA says that parents have a choice of where their child should go and some children are too disabled to live at home, and Dudek claims it is not a cost-saving policy. But the parental choice is illusory, and her financial calculations are at odds with the facts.
Florida has cut millions of dollars from programs to help parents care for their children at home. Marie's mom, Doris Freyre, who had looked after Marie for 14 years at home, had a court order requiring the state to provide 24-hour help and still couldn't get the services. The waiting list for community and home-based services can be years long. Yet in 2011, Gov. Rick Scott's administration rejected $35 million in federal money that would have helped children and others transition out of nursing homes and back home because it was a grant under the Affordable Care Act.
The state doesn't have the money for desperate parents who need in-home help, but money is available for the state's powerful nursing home industry. AHCA pays a premium for children to go to nursing homes, reimbursing the homes $506 per day to care for a child compared with $213 for an elderly adult.
What happens to children in these homes is mixed. Some may be appropriate placements, but the evidence is overwhelming that most children do better in community settings. The Justice Department's Civil Rights Division says too many of the hundreds of children in Florida nursing homes are growing up isolated from their families. They are denied socialization opportunities and are without recreational or educational activities essential to development. Children have been found stuck in front of a television as their education.
Marie's case is an extreme example. At every turn she was failed by an unfeeling system more concerned with dollars than people. Hillsborough Kids, a private child welfare service then under contract with the Department of Children and Families, ignored a court order to provide Marie with around-the-clock care so she could go home from Tampa General Hospital. Records show that Tampa General pushed for Marie's immediate discharge because it was losing money on her. The only nursing home that would take Marie was the Florida Club Care Center in Miami Gardens — five hours from her mother who had no car. Marie arrived screaming from the ambulance, but even after she started suffering from labored breathing, the home didn't call a doctor. Marie died of a heart attack at a hospital the next morning.
After the Herald's report on Marie's case, DCF altered its policy and is now opposing institutionalization for the state's disabled foster children. That is a positive step. But DCF has custody of only 31 of the approximately 220 medically fragile children who currently live in nursing homes. AHCA is resisting change for the remaining children and claims parents of children whose nursing home care is paid by Medicaid can have their children moved. Dudek told legislators the agency is in compliance with federal law, but the state's own records tell a different story.
The Justice Department says that by sticking children in nursing homes Florida is violating federal law that prohibits discrimination against disabled people and endangering the safety and development of vulnerable children. In Marie's case, Florida's policy wasn't just dangerous. It was fatal.