Tampa Bay Times: Florida mother’s lonely fight ends with disabled son’s death
By Carol Marbin Miller, Miami Herald
In Print: Saturday, December 29, 2012
Tereza Pereira had cared for her severely disabled son at home for most of
his life. But she was in her 50s now, working two jobs to stay afloat, and
state health administrators had repeatedly refused to pay for enough
in-home nursing care to keep Bryan safe.
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 $300 per day there.
State health and disability administrators had a different plan: For $200
more each day, Bryan would live in a nursing home.
“I don’t want my son in this place,” Pereira wrote to disability
administrators of the Florida Club Care nursing home in Miami Gardens. “If
something happened with my son, (if) he died,” she wrote, “I will feel that
this place killed” him.
Two years later, that is just how Pereira feels.
Disability administrators insisted that Bryan move to the nursing home. And
there he died, a year later, on July 29, 2010.
“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.”
Bryan Louzada was one of five medically complex children to die at Florida
nursing homes in the last six months of 2010 — and among 130 such children
who have died in those homes since January 2006, records show. Though
medically fragile children who live with their parents, or in a community
setting, also die, state records show they die in far lower numbers.
State health administrators insist that the choices of parents like Pereira
are the guiding force behind their decisions on where sick children live.
But interviews and records show Pereira had fought for half of Bryan’s life
to find a homelike setting for him. And at every turn state health and
disability chiefs steered him toward an institution or nursing home.
It is the dirty little secret of Florida’s health and social service
system: Though institutional care can be dramatically more expensive than
in-home care, state agencies push children toward institutions.
‘Institutional bias’
Here’s why: Medicaid, the state and federal insurance program for needy and
disabled people, has become the insurer of last resort for virtually all
children with catastrophic disabilities. Under federal law, a nursing home
or facility bed is an entitlement, and that means Florida health
administrators must provide such a bed to any family that asks. Sometimes
far less-costly in-home nursing services are not an entitlement. Because
they can, Florida lawmakers cap spending for such care, resulting in a
waiting list of 25,000 for home- and community-based services.
Federal health polices “lead to irrational outcomes,” said Jim DeBeaugrine,
who was director of the state Agency for Persons with Disabilities under
former Gov. Charlie Crist. “People go into higher-cost facilities than what
they need, and, quite frankly, what is best for them.
“It’s referred to as the ‘institutional bias,’ and that’s what the system
has, because that’s where the dollars have to go. 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 May 2010. Before
they could, he died.
“I didn’t have a choice,” Pereira said. “Now Bryan has passed away. What
will I do with the rest of my life?”
A second chance
Pereira, a psychologist in her native Brazil, was still grieving the
AIDS-related death of her 5-year-old son, Bernardo, who had hemophilia and
had been given an infected blood transfusion, when she learned she was
pregnant with Bryan. It was as if she’d been given a second chance.
But when Pereira was 27 weeks into her term — and on a trip to Miami — she
suddenly went into labor. The consequences were calamitous.
Terrible diagnoses
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 Miami Children’s Hospital, and Pereira transferred her
son there.
“My son is dying,” she said. “I have nothing to lose.”
At Miami Children’s, doctors inserted two shunts into Bryan’s
underdeveloped 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 Brazil, leaving her with
two small children — took him home, and organized her small Kendall
apartment into a makeshift hospital.
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.
Doctors charted every milestone, though they were few, and far between. At
1 year of age, Bryan had the cognition and the fine motor skills of a
1-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 Department of Children & Families intervened, strongly
recommending Bryan leave the house, Pereira said.
Pereira felt like the state was forcing her to choose between her two
children.
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 Medicaid administrators refused
to pay. Bryan ended up in what is called an intermediate-care facility, an
institution for people with severe disabilities.
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.
Reordering her life
By the mid 2000s, Pereira had had enough. Bryan was at a nursing home in
Broward for only a month when Pereira called police to report he’d been
sorely neglected, police reports show.
She removed him from the nursing home and took him home — again. 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 Baptist Hospital in Miami, then back to Miami Children’s. The
hospital was eager for him to leave, but Pereira was not eager to place him
in another nursing home.
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,
nondescript ranch house off of NE 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.
To get Bryan into Baby House, Pereira would first have to get him off the
state’s disability wait list. 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.
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. Bryan
was sent to the nursing home.
At 5:30 a.m. on July 29, 2010, Bryan was rushed to the Joe DiMaggio
Children’s Hospital Emergency Room in Hollywood.
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 for¬cing her to make a
terrible choice.
“I want to know the reason why my son passed away,” she said.
http://www.tampabay.com/news/health/a-florida-moms-lonely-fight-for-her-disabled-son/1267881
