A Florida mom’s lonely fight for her disabled son [The Miami Herald]
By Carol Marbin Miller, The Miami Herald | |
McClatchy-Tribune Information Services |
Pereira wanted her teenage son to live at a place called Baby House, a small group home for medically fragile children and young adults, with a long track record of treating children like Bryan as family. His care would have cost the state
State health and disability administrators had a different plan: For
"I don't want my son in this place," Pereira wrote to disability administrators of the Florida Club Care nursing home in
Two years later, that is just how Pereira feels.
Disability administrators insisted that Bryan move in to the nursing home. And there he died, a year later, on
"The best place for Bryan was with me," Pereira said. "I wanted my son to leave this world in peace -- not the way he passed away."
State health administrators insist that the choices of parents like
It is the dirty little secret of
Here's why:
Federal health polices "lead to irrational outcomes," said
"It's referred to as the 'institutional bias,' and that's what the system has, because that's where the dollars have to go," DeBeaugrine added. "It's nonsensical."
The irrational outcome in Bryan's case was that a sickly teen was forced to live in a nursing home that is considered one of the state's worst -- Golden Glades, formerly known as Florida Club Care, is on the state "nursing home watch list" of homes that did not meet even minimum standards of care during a recent inspection.
After a year of pleading, Pereira said disability administrators told her they would consider removing him from the nursing home in
"I didn't have a choice," Pereira said. "Now Bryan has passed away. What will I do with the rest of my life?"
"The bottom line is simple:
Officials with Golden Glades did not return phone calls seeking comment.
A second chance
Pereira, a psychologist in her native
But when Pereira was 27 weeks into her term -- and on a trip to
Bryan suffered a hemorrhage, and spinal fluid flooded his skull. He began to experience seizures. Before doctors could insert a shunt to drain the cerebral fluid, he contracted meningitis, a life-threatening infection.
In the nursery at Jackson Memorial, Bryan's head swelled, his eyes bulged. Pereira went to a local Catholic church to pray when she was interrupted by a parishioner. "A lady touched me. She said, 'talk to me.' " The woman was a pediatrician at
"My son is dying," she said. "I have nothing to lose."
At Miami Children's, doctors inserted two shunts into Bryan's under-developed brain and fought his infection. And though he slowly recovered, the list of his final diagnoses proved to be long and terrible: cerebral palsy, mental retardation, blindness, seizures, severe reflux, asthma and hemophilia.
Medical professionals told Pereira to send her son to an institution. Instead Pereira -- whose husband returned home to
For the next 18 years, Pereira kept detailed records of Bryan's health and his often-cruel journey through the state's medical and social service system.
There were visits to the pediatrician, the hematologist, the neurologist, the gastroenterologist and the child development experts. Physical therapists stretched and relaxed Bryan's legs, and occupational therapists worked to keep his fists from becoming permanently clenched. Speech therapists helped him suck and swallow.
Doctors charted every milestone, though they were few, and far between. At one year of age, Bryan had the cognition and the fine motor skills of a one month old.
Bryan remained with his mother until he was about 6.
Pereira says disability administrators refused to provide her with enough nursing hours to enable her to both work and be a caregiver. Hospital case notes quote a case worker as saying Pereira "lacked the facilities at home to provide care for Bryan."
Bryan's older sister was a teenager, and was struggling over the caregiver demands on her life. "She was crying. She said, 'I want a normal life. I can't stand this anymore.' "
That's when the
Pereira felt like the state was forcing her to choose between her two children.
"All the social workers and doctors pressed me to put my son in a group home, because my daughter was very depressed, without any attention," Pereira wrote years later in an email to the state. "But Bryan will continue to be my son, and I am his guardian."
Pereira said she asked disability administrators to place her son in Baby House, a specialty group home run by United Cerebral Palsy, a national disability provider. Pereira had toured the home, and liked what she saw.
But Baby House is not an institution, and
Bryan spent most of the next decade bouncing between developmental disability institutions, nursing homes and Miami Children's, which had become the hospital where Pereira felt her son was safest. In 2005, when Pereira had to move her son from one facility to another, disability administrators gave her a state handbook. "You're The Driver" it said, under a picture of a gas station. The message: Parents and guardians are decision makers over how and where loved ones receive care.
Pereira's records document a litany of disappointments: At one institution in
Reordering her life
By the mid-2000s, Pereira had had enough. Bryan was at a nursing home in
She removed him from the nursing home, and took him home -- again.
Photos from that time show how Pereira rearranged her world to take care of her then-16-year-old son. She moved all the furniture out of her cramped living room to accommodate Bryan's hospital bed. White plastic shelves were moved in to store diapers, wipes, a dozen medications, and a host of medical gadgets and supplies. An IV towered over the bed, along with an adjustable lamp to illuminate Bryan when his mom fed him and administered medications.
But the ping-ponging continued: Unable to care for Bryan with limited in-home nursing. Pereira agreed to send him again to a disability institution. "What time am I going to take a shower? I am alone," she said. "If I had to go to the supermarket, who would take care of Bryan?"
Bryan went to
Bleak choices
The state offered Pereira two choices: Bryan could return home with 10 hours each day of in-home nursing help -- an option a judge later called "unacceptable as it would not allow the mother to work, and would not meet [Bryan's] medical needs, as he requires an extensive amount of care just for feedings."
Or he could go to a nursing home.
Pereira wanted a third choice. She had been to Baby House, in a small, non-descript ranch house off of
At Baby House, she wrote, staff would see him as a human being, "not as a dollar."
In
Pereira wrote a longhand note to health administrators. "I am alone in this country," she said. "I am not able to care [for] Bryan in home even with home care," because the nursing hours weren't sufficient, and because the nurses often failed to show up, or showed up late, even when they were scheduled." It was, she wrote, "a disaster."
A
"I want to beg, please, that my son be approved" for community-based care, the only funding pot the state could use to pay for Baby House. "I don't have anybody in this country. All my family is in
"If Bryan survived so far, it is because I have been a good mother caring for my son," she added. "I cannot permit Bryan to suffer any more."
The waiting list
To get Bryan into Baby House, Pereira would first have to get him off the state's disability wait list -- where he was languishing along with 25,000 other Floridians. The only way to get off that list, records show, would be for Bryan to become "homeless," or "in danger of being neglected or abused." Pereira was being punished for being a good mother.
In a letter dated
"They were only interested in dollars and cents, and I told them that," said
Pereira wrote letters to then-U.S. Reps.
"Please remember," she wrote to the state, "that Bryan is a person with very involved medical and emotional needs, and not just another 'case.' "
"I want to be with my heart full and happy that I did the best for him," she wrote. "I don't want him to suffer anymore."
'Mommy is here'
Two of Pereira's thick files document a desperate mother's attempt to keep her son out of a nursing home -- in legal format: notices of continuance, subpoenas for deposition, proposed orders to dismiss, multiple notices of hearings, and a final order.
At a hearing in
A state administrative law judge ruled against her two months later. He offered Pereira a half-sentence as a consolation:
"That [Bryan] has survived to the age of 15 is a testament to his mother's devotion, and the skilled medical care he has received since birth, primarily at
Bryan was sent to the nursing home.
He remained there for a year, and his mother drove the length of
In the middle of the night on
At
At the hospital, Pereira found a doctor performing CPR. She yelled at him to stop. The compressions, she said, would cause him to bleed uncontrollably.
"I said, Bryan, Mommy is here. I will be with you."
Bryan died at
Without an autopsy, a lawyer told her, she had no recourse against anyone.
"He was safe with me," Pereira said.
Aside from the nursing home, Pereira said she holds state social service administrators responsible for Bryan's death -- for forcing her to make a terrible choice.
"I want to know the reason why my son passed away," she said.
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