The U.S. Department of Justice has put Florida on notice for institutionalizing hundreds of developmentally disabled children in nursing facilities. The federal government has requested that the state “correct” the practice or else face a lawsuit.
“I had no idea it was happening,” said Mary Ann Bickerstaff, director of children’s services at ARC Gateway.
“I didn’t either, not until we heard it from the state,” said Pat Young, ARC Gateway chairman. “I thought I would throw up.”
Bickerstaff and Young—working for an organization serving the disabled—stood in a classroom filled with equipment designed to aid in a developmentally-challenged child’s progression. This news was tough for them to digest.
“It hurts my heart, really,” Bickerstaff said.
In September, Assistant U.S. Attorney General Thomas Perez wrote a letter outlining the federal position. He informed Florida Attorney General Pam Bondi that the state was not in compliance with the American with Disabilities Act.
“Hundreds of children are currently segregated in nursing facilities throughout Florida,” wrote Perez. “They are growing up apart from their families in hospital-like settings, among elderly nursing facility residents and other individuals with disabilities. They live segregated lives—having few opportunities to interact with children and young adults without disabilities or to experience many of the social, educational and recreational activities that are critical to child development.”
The justice department investigated six nursing facilities in Florida, meeting with children and reviewing data. The investigation “consistently identified children who are qualified to receive services in the community, and who would benefit from moving home with their families or to other community settings if appropriate supports were provided to them.”
Perez said that Florida has “planned, structured, and administered a system of care that has led to the unnecessary segregation and isolation of children, often for many years, in nursing facilities.”
“While cutting community-based services,” he writes, “the state has simultaneously implemented policies that have expanded facility-based care, including payment of an enhanced per diem rate to nursing facilities serving children who have medically fragile conditions.”
During its investigation, the department of justice visited children ranging in age from infancy to early adulthood. They observed them participating in scheduled activities or “watching television in a common area, or sitting unattended in their beds.” They also spoke with staff at the facility that told them “once we get the children, very few of them go home” and that sometimes families initially believe their child will be returning home and “then they stay.”
“Many family members of children in the facilities we visited have expressed their desire to bring their children home or see them move to a community-based setting,” Perez wrote. “‘I want my baby home,’ said the mother of one three-year-old with Down syndrome … her daughter has been in a nursing facility since infancy.”
State health officials contend that Florida is in compliance of all laws. They have noted that the DOJ’s position is similar to one staked out in a class-action lawsuit filed earlier this year on behalf of a group of parents of children with disabilities.
Organizations like ARC Gateway don’t respond well to charges like the ones laid out in the recent department of justice letter. They don’t respond any better to Florida’s reaction.
“It saddens my heart and deeply distresses me that the state of Florida would allow such treatment of a child,” ARC Gateway Executive Director Donna Fassett wrote in a statement, noting that none of the instances cited in the DOJ investigation occurred in Northwest Florida.
In Pensacola, ARC Gateway’s Pearl Nelson Center caters to children with disabilities. Bickerstaff stresses early intervention and believes such attention dramatically improves a disabled child’s horizons.
“The focus is to get started as early as possible,” she explained.
This approach is essentially the opposite of the one described in the DOJ letter. ARC Gateway strives to equip disabled people with the tools they need to venture into the world, as opposed to stowing them away in isolated facilities.
“This is our place,” said Young, as she walked ARC’s local property. “This is the place we love. These are the people we love.”
In addition to providing services, ARC Gateway provides opportunities for people in its program to work, to earn a paycheck. There’s a shredding facility and a nursery.
“It gives them a sense of pride,” said Dawn Stein, program manager with the organization.
Barbara Collier has worked for the past 12 years at ARC Gateway’s nursery. She has some pretty strong opinions about the scene conveyed in the DOJ letter.
“I was a still born baby,” Collier said. “I didn’t walk, I didn’t talk. I had to go through therapy.”
The woman said she believes it is important for disabled children to be with their families, or in a community-based program. Such an environment, she said, is more conducive to realizing the normal aspects of life.
“Cooking, cleaning, bowling,” Collier rattles off some of her routine.
“Karaoke?” Young chided her with an inside joke.
“I don’t sing,” Collier laughed. “Don’t push me there, I don’t sing.”