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Florida Girl With Cerebral Palsy Dies As Result Of Bureaucratic Insensitivity

TAMPA, FL – While various Florida bureaucrats passed responsibility around like a live grenade, 14-year-old Marie Freyre fought a losing battle for her life that ended in a nursing home hours away from her grieving mother, Doris Freyre.

In March 2011, state child protection investigators took the 14-year-old girl who suffered from seizures and severe cerebral palsy away from her mother saying the child’s disabilities made it almost impossible for her to be cared for by her mother.

A Tampa judge ordered that Marie be returned to her mother, where the girl could receive in-home nursing care. However, Florida healthcare administrators refused to pay for it in spite of the fact that many studies show that in-home care is often much better than care in an institution.

To make matters worse child welfare workers ignored the judge’s order completely leaving Marie in a hospital doing its best to rid itself of her. Two months later she was transported to a nursing home in Miami where she died 12 hours after her arrival.

The last days of Marie Freyre tell a story of medical neglect and death by bureaucratic insensitivity. In spite of a hearing that ordered Marie to be returned to her home, the order was ignored.

Records obtained by The Miami Herald show state child welfare workers disregarded Judge Corvo’s order and a caseworker wrote the state “is not recommending the child return home,” 12 days after the hearing.

Two days after that, the state Attorney General’s Office appeared before a different judge, Emily Peacock. AHCA, which runs Medicaid, had refused again to pay for 24-hour care, a lawyer said. With no permanent solution in sight, the state said, a nursing home was the only option.

“The best placement for the child right now is a…nursing home where she can get that 24-hour supervision and care that she needs,” said Angeline Attila, an assistant attorney general. The state, she added, “is recommending that the child remain in a nursing home.”

The new judge, who never asked why the state ignored a prior judge’s order, agreed — though she granted Freyre the right to visit with her daughter all she wanted. The judge ignored the fact that, since the mother does not drive and the nursing home was six hours away from Tampa, such an order was meaningless.

On April 25, 2011, workers at Tampa General Hospital loaded the teen onto a stretcher in a private ambulance — as her mother and grandfather begged them to stop. Even as caseworkers were packing Marie’s belongings, her grandfather was frantically filing hand-written emergency motions in court to delay the trip.

Doris Freyre, case notes say, “stated that no one knows my child like me,” and that Marie’s dislocated hip would cause her great pain if she were strapped to a stretcher for hours. She added: “If something happens to my daughter I am holding all of you responsible for it.”

Marie made the trip to Miami-Dade alone because, due to state regulations, the ambulance company does not allow passengers. Records also show the two ambulance workers refused to take Marie’s seizure drugs with them because under the company’s policy, they were not allowed to administer medications. According to a report detailing Tampa General Hospital’s care of Marie, the hospital neglected to ensure she was properly hydrated before she left. During her five-hour ambulance ride, she was given no water or food.

Marie arrived at the Miami Gardens Nursing Home the way she left Tampa: screaming. By 5:40 a.m. on April 27, 2011, Marie was described as having “labored” breathing. Five minutes later, she was unresponsive. The AHCA investigation concluded the child had been given none of her life-sustaining anti-seizure drugs, required three times each day. Marie was pronounced dead at 6:54 a.m. at Jackson North Medical Center. Cause of death: heart attack.

In spite of this incident and others like it, the nursing home industry insists that some children are so disabled or medically complex that their needs can best be met in a nursing home. But according to a detailed analysis of state records filed in federal court by a Miami civil rights lawyer, Matthew Dietz, 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

Among children younger than 3, the death rate over four years for children in institutions is 41.2 percent, compared with less than 10 percent for children cared for at home — meaning children in nursing homes are three times more likely to perish, the records say. This is despite the fact that disabled and medically fragile children living at home often spend several hours each day with parents, siblings and grandparents who are required to provide sometimes complex medical care.

“There is no question at all that children do better in their homes,” said Dr. Daniel Armstrong, the associate chairman of pediatrics at the University of Miami, and director of the Mailman Center for Child Development. “There is mounting and overwhelming evidence that children fare better in supported homes and in community settings, rather than institutions.”

No doubt, Marie Freyre was a fragile, at risk 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.

Though she could not speak Marie could smile and her mother had learned to interpret Marie’s expressions and vocalizations. The tragedy here is that, had authorities simply listened to the one who knew Marie best, things might have gone far differently. Regulations were intended to protect us but far too often they can be our worst enemy.

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