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Marie: a little girl’s death by bureaucratic callousness, medical neglect

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.

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.”

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. Her mother learned to interpret Marie’s expressions and vocalizations in lieu of language.

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. “When Doris was first informed that her only child could be born with significant disabilities, she did not decide to abort this child,” said the family’s Tampa lawyer, Peter Brudny. “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.”

But in March 2011, one of the family’s in-home nurses reported several concerns about Doris Freyre’s parenting of Marie to the state Department of Children & 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.

“You are to be congratulated for caring for your daughter alone for 14 years. This is something that has to have been very, very difficult for you. As a mother,” she added, “I was moved by how hard you’ve worked to take care of your daughter.”

Corvo, who was presiding over child welfare cases in Tampa, 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 state Agency for Health Care Administration to provide her with 24-hour nursing aides, and her Tampa pediatrician wrote a prescription for the hours. As it stood, Freyre had a gap between midnight and 7a.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 non-verbal 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?” asked the judge.

At the end of the hearing, Corvo required child welfare administrators to do better. She wrote an order that Marie be returned to her mother, with additional nursing care through the night.

It was an order the state simply ignored.

Records obtained by The Herald show state child welfare workers disregarded Corvo’s order that Hillsborough Kids, which is under contract with the Department of Children & Families, pay for the extra nursing hours while caseworkers looked into additional dollars from Medicaid.

The state “is not recommending the child return home,” a caseworker wrote 12 days after Corvo’s hearing.

Two days after that, the state Attorney General’s Office and Hillsborough Kids 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.

But even that kindness proved meaningless.

A DCF review of Marie’s death said that only one of the state’s six nursing homes that accept children was willing to take the girl, the Florida Club Care Center in Miami Gardens.

At first, the state Attorney General’s Office, which was representing Hillsborough Kids, asked that the long trip be delayed so lawyers could seek permission from a judge to move Marie. “There is no legal order indicating that child cannot be moved out of county,” case workers wrote in Marie’s file. “However, knowing the judge’s feelings on this case, it would be best to have the judge hear this…prior to the child being moved.”

Prosecutors changed their minds. They were under significant pressure to get Marie out of Tampa General, which, records show, had been complaining bitterly that it was losing money on her care. A hospital social worker, records say, “was adamant about the child leaving the hospital today.”

“The [Attorney General’s Office] later determined that the issue did not have to go before the court for the child to be moved,” a DCF review said.

So, at 11:30 a.m. 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, Brudny said.

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.”

Caseworkers ignored her, too.

Because Freyre had no car — and because the private ambulance refused to allow her to join Marie — the judge’s order granting her unlimited visitation was worth nothing.

Marie made the trip to Miami-Dade alone.

Records show the two ambulance workers refused to take Marie’s seizure drugs with them; under the company’s policy, they were not allowed to administer medications in any case. 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.

A September 2011 investigation by AHCA of how Tampa General discharged Marie to the nursing home faulted the hospital for a number of violations, including failing to ensure the child had enough fluids and was properly medicated. The hospital’s lack of “concern” for Marie, the report said, left her “in danger.”

The U.S. Centers for Medicare and Medicaid Services placed the hospital under the status of “Immediate Jeopardy” following the review, the highest penalty under federal health regulations, said an AHCA spokeswoman. The following October, the federal agency removed the designation after Tampa General implemented a corrective action plan. AHCA also is seeking to fine the hospital $5,000 in the case, and a hearing in the matter is scheduled for Jan. 14 of next year.

Marie arrived in Miami Gardens the way she left Tampa: screaming.

AHCA records for the next 12 hours mention only four notations in the nursing home file, and two of them document Marie “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.

Within hours of Marie’s demise, a procurement agency was seeking her organs.

Doris Freyre called Tampa General the day her daughter died, case notes say. “The mother broke out crying and stated that Miami killed her daughter.”

Two weeks later, on May 9, 2011, Doris Freyre appeared one last time before a judge in Tampa, Emily Peacock, who declared herself “terribly sorry” for Freyre’s loss.

“I don’t accept your excuse,” the mother replied. Freyre said she was in court to get her daughter’s body back from the Miami-Dade Medical Examiner’s Office. With no trust left for state officials, Freyre was seeking a private autopsy.

“It’s the mother’s position that the [state] had the child removed without proper authorization,” said her attorney, Laguerra Champagne. “She objected to the child being physically removed from Hillsborough County and transported to Miami. No court hearing was held and, unfortunately, we’re here today, dealing with a dead child instead of a living child.”

Freyre, another lawyer said, “had a right to make a request as to the medical treatment of her child,” and had the state not robbed her of that right, Marie “perhaps may even still be alive today.”

Attilla, the prosecutor who, weeks earlier, had fought so hard to get Marie to the nursing home, no longer wanted to discuss the matter. She told Peacock that a child welfare judge had no “jurisdiction” over a dead child and prosecutors would file a court motion saying so.

“Not to seem insensitive; I understand the mother is quite frustrated and I understand that she’s grieving,” Atilla said, “but the information that she’s providing to the court is moot at this point in time.”

Despite Atilla’s protestations, Freyre had the last word.

“I had her for 14 year – cared [for] and loved her,” Freyre said. “And you have her …in prison, in the hospital, without going out in the sun, without being with other people, in prison.”

“Then, in [12] hours, you took her down to Miami and she died,” Freyre added. “And I want the truth of this to come out. I want justice.”

Marie’s body remained in storage for nine months while the M.E.’s office completed its autopsy, and Freyre held a memorial with no body. In the end, Marie’s body was cremated in Tampa. Her ashes then were sent to Puerto Rico for a private family funeral.