Saturday, December 8, 2012

Disabled daughter dies just hours after state takes her from mom


Disabled daughter dies just hours after state takes her from mom


Tampa Bay Times
December 8, 2012
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.
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.”
Without doubt, Marie Freyre was a fragile, sickly child. Born with cerebral palsy and fluid surrounding her brain, Marie had a shunt in her skull to drain the fluid and suffered from life-threatening seizures. One of her hips was permanently displaced, causing sometimes excruciating pain. Marie could smile, though she could not speak.
Doris Freyre — who worked at a family store in Puerto Rico before becoming disabled herself— cared for her daughter well for 14 years, and Marie had suffered no seizures in recent years, records show.
“Doris spent every day of 14 years of her life giving everything she had to Marie, guaranteeing that Marie lived as healthy and wonderful a life as God allowed her,” said the family’s Tampa lawyer, Peter Brudny.
But in March 2011, one of the family’s in-home nurses reported several concerns about Doris Freyre’s parenting of Marie to the Department of Children and Families, setting in motion a disastrous chain of events. Hillsborough Circuit Judge Vivian Corvo began a hearing on the case on March 30, 2011, by praising Freyre for her care of her daughter.
Corvo wanted to help Freyre — not punish her. The greatest challenge was Freyre’s own health: Freyre suffers from six herniated discs, as well as carpal tunnel syndrome in her wrists.
“The doctor told me to do surgery,” Freyre said in court. “I told him no, because I have to take care of my daughter.”
Freyre had asked the Agency for Health Care Administration to provide her with 24-hour nursing aides. As it stood, Freyre had a gap between midnight and 7 a.m. where she needed help to reposition Marie and change her diapers. “It’s not easy,” Freyre told the judge. “I’m human.”
But AHCA administrators refused to pay for the additional hours. Corvo wanted to know why. “This is a nonverbal child, with all of these issues,” the judge said. “Why would this mother not qualify for 24-hour care?”
From the beginning, state child protection administrators wanted to send Marie to a nursing home. Freyre’s attorney suggested such a move could kill her.
“With this type of child, when you institutionalize them,” attorney Steve Zucker said, “they never do well. And I’m very concerned.”
“Can the (state) do better than this?” he asked the judge.

No comments: