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.
“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 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. 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.
To Pereira, it seemed like a cruel joke. “He was my son,” she said. “I wanted to make the decisions for him.”
Pereira’s records document a litany of disappointments: At one institution in Miami, Bryan was repeatedly bitten by another child. At a nursing home in Plantation, his hemophilia was so poorly controlled, she said, that he developed racoon eyes from internal bleeding.
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. “I was scared he would die,” she said. “I was scared he would suffer.”
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 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. “The hospital is making my life impossible,” she wrote to the state, adding social workers were insisting Bryan once again go to a nursing home.