Even after Marie Freyre died alone in a nursing home 250 miles from the family that loved her, Marie’s mother had to fight to bring her home.
In March 2011, state child protection investigators took 14-year-old Marie from her mother, Doris Freyre, claiming Freyre’s own disabilities made it almost impossible for her to care for Marie, who suffered from seizures and severe cerebral palsy. A Tampa judge signed an order that Marie be returned to her mother, with in-home nursing care around the clock.
Florida healthcare administrators refused to pay for it, although in-home care can be demonstrably cheaper than care in an institution .
Child welfare workers ignored the order completely.
Two months later, Marie was strapped into an ambulance for a five hour trip to a Miami Gardens nursing home, as her mother begged futilely to go with her. Marie died 12 hours after she arrived.
“Since the state of Florida took custody of my daughter, I would like the state of Florida to bring me back my daughter,” Freyre said at a May 9 court hearing, 12 days after her daughter died.
“They kidnapped my daughter. She was murdered,” said Freyre, 59. “And I want my daughter back.”
The last days of Marie Freyre, chronicled in hundreds of pages of records reviewed by The Miami Herald, are a story of death by bureaucratic callousness and medical neglect. The episode sheds significant light on an ongoing dispute between Florida healthcare regulators and the U.S. Department of Justice. Though the state claims that the parents of severely disabled and medically fragile children have “choice” over where their children live and receive care, federal civil rights lawyers say Florida, by dint of a rigged funding system, has “systematically” force-fed sick children into nursing homes meant to care for adults — in violation of federal laws that prohibit discrimination against disabled people.
Doris Freyre had no choice.
Civil rights lawyers are asking the state to allow a federal judge to oversee Florida’s Medicaid program, which insures needy and disabled people. The program will pay as much as $506 a day — twice the rate for frail elders — to put a child like Marie in a nursing home, but refuses to cover lesser or similar amounts for in-home care.
Late Friday, state health regulators wrote their final letter to the Justice Department in response to a deadline. The state, they wrote, “is not in violation of any federal law” governing the medical care delivered to needy Floridians, and cannot “agree to the demand …that a federal court take over the management of Florida’s Medicaid service-delivery system.”
The nursing home industry has insisted that some children are so disabled or medically complex that their needs can best be met in a nursing home.
However, court records filed last week suggest children fare worse in nursing homes than in community settings.
Among children aged 3 or older, the death rate for medically fragile children in nursing homes is 50 percent higher than for children who receive care at home, according to a detailed analysis of state records filed in federal court by a Miami civil rights lawyer, Matthew Dietz, who first sued the state in an effort to free children from institutions. Kids three or older living at nursing homes are three times more likely to die than children who receive nursing care at a medical day care center during the day, but return at night to their parents.