Disabled daughter dies just hours after state takes her from mom

By Carol Marbin Miller, Miami Herald
In Print: Tuesday, December 4, 2012

Marie Freyre was born with cerebral palsy and fluid surrounding her brain. She suffered from life-threatening seizures.
	[Family photo courtesy of Miami Herald]

Even after Marie Freyre died alone in a nursing home 250 miles from the family in North Tampa 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 Doris' own disabilities made it almost impossible for her to care for Marie, who suffered from seizures and severe cerebral palsy. But a Tampa judge signed an order that Marie be returned to her mother, with in-home nursing care around the clock.

Florida health care 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, 59, said at a May 9 court hearing, 12 days after her daughter died.

"They kidnapped my daughter. She was murdered," said Freyre. "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 health care 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.

Civil rights lawyers are asking the state to allow a federal judge to oversee Florida's Medicaid program, which insures needy and disabled people. It pays as much as $506 a day to put a child like Marie in a nursing home, but refuses to cover lesser or similar amounts for in-home care.  FULL STORY