A horrible, heartbreaking look at the intersection of health care and bureaucracy, courtesy of the Miami Herald:
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 Herald calls it “a story of death by bureaucratic callousness and medical neglect.” Florida’s Medicaid program pays for nursing home care, but not in-home care… even though an analysis of state records revealed “the death rate for medically fragile children in nursing homes is 50 percent higher than for children who receive care at home.” Even returning home to stay with parents after a day of institutional care dramatically reduces the death rate. A doctor of pediatrics quoted by the Herald said “there is mounting and overwhelming evidence that children fare better in supported homes and in community settings, rather than institutions.”
But the nursing home industry strong supports the current regulations, which led to a sequence of events that began with an in-home nurse filing a complaint with state authorities about Doris’ care of Marie… even though Doris was so dedicated to her daughter that she put off her own surgeries to take care of her. The family lawyer noted that Doris chose not to abort Marie when informed that she could be “born with significant disabilities,” and then 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.”
Doris wanted only a little more help with overnight care for Marie, but the state Agency for Health Care Administration refused to pay for it, insisting on institutional care instead. Judicial orders to the contrary were ignored, as the gears of the system relentlessly ground away, dragging a screaming Marie away from her mother and eventually depositing her in the only one of the six Florida nursing homes that would take her… 250 miles away from her disabled mother, who did not even have a car. Pleas, and “frantically filed hand-written emergency motions in court to delay the trip” prepared by her grandfather, were to no avail.
Everyone who knew anything about the child knew that the trip would be extremely hazardous to her physical and emotional health, but off she went anyway, on a horrific journey that defies moral imagination:
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.
A lot of agencies and corporations made a lot of mind-boggling “mistakes” that ended in tragedy. It even took a legal battle for Freyre to recover her daughter’s body; a memorial had to be held without Marie’s remains. The layers of paperwork separating parents, children, and their doctors can be extremely hazardous to our health, but we seem hell-bent on making it worse.