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 Northeast 163rd Street in North Miami Beach. Baby House’s director, Carol Montiel, had visited Bryan. “She said my son is a lovely, handsome boy,” Pereira wrote, and she would take very good care of him.
At Baby House, she wrote, staff would see him as a human being, “not as a dollar.”
In March 2007, Pereira began her futile campaign to move her son to Baby House. She applied for a state program that provides money for non-institutional care for disabled people, and was, instead, placed on a long waiting list.
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 March 24, 2007, email to the Department of Children & Families had this in the subject line: “Please. I beg.”
“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 Brazil,” she wrote
“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 July 23, 2008, a worker told Pereira the Agency for Persons with Disabilities planned to cut spending on those in community-based programs to accommodate a few clients stuck on the waiting list. The shift, which might have moved him up a few notches, was referred to as a “cost efficiency.”
“They were only interested in dollars and cents, and I told them that,” said Carol Montiel, the Baby House director who had been speaking with Pereira for years, and was trying desperately to help.
Pereira wrote letters to then-U.S. Reps. Kendrick Meek and Debbie Wasserman Schultz, and Sen. Bill Nelson. She went to Washington for a family advocacy day and was pictured in The Herald alongside Rep. Ileana Ros-Lehtinen.
“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 July 2007, an administrator with Florida’s Agency for Persons with Disabilities and a nurse with the state’s Agency for Health Care Administration testified that Bryan’s medical needs could be met in a nursing home. Pereira, who speaks fluent Portuguese but strained English, represented herself. The state, she said, “hired a lawyer to go to court.”
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 Miami Children’s Hospital.”
Bryan was sent to the nursing home.
He remained there for a year, and his mother drove the length of Miami-Dade County — from Kendall to near County Line Road — as often as she could to see him.
In the middle of the night on July 29, 2010, Pereira says, she had a premonition: “I called there to ask how he was. They told me he was fine; he was sleeping.”
At 5:30 a.m., Bryan was rushed to the Joe DiMaggio Children’s Hospital Emergency Room in Hollywood. Though she had instructed the nursing home to transport him whenever his heart rate exceeded 130, his heart had raced to 178, she said. “Somebody should have noticed.”
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 11:39 a.m. Cause of death: respiratory failure. Pereira said she wanted an autopsy, wanted to know if the death could have been avoided, but doctors told her she’d have to pay $4,000 to get one.
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.