Tereza Pereira had cared for her woefully 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 in 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 Tereza Pereira are the guiding force behind their decisions on where sick children live. But interviews and records show Pereira had fought for half Bryan’s life to find a home-like 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.
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,” 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.