For 14 years, the state of Florida took no issue with Dorothy Freyre caring for her daughter Marie, who had cerebral palsy, seizures, and other severe medical conditions, at home. In April 2011, after being placed in a nursing home for less than a day, the 14-year-old girl was dead.
Marie’s life and death, chronicled in this Miami Herald story from over the weekend, probes further into how and why some Florida children with severe disabilities were placed in Florida nursing homes, often with little or no access to education or even human interaction.
The U.S. Department of Justice revealed in September that it is investigating the state’s treatment of hundreds of children like Marie.
More from the Herald:
Records obtained by The Miami Herald from the state agency that has defended the practice of housing children in nursing homes [the Agency for Health Care Administration], as well as records from other agencies and advocacy groups, show the children in such facilities often receive little education, are provided few activities and can suffer grievous neglect. Two of the six nursing homes that house children are on the state's "watch list" of deficient facilities; one is on both the state list and a federal "special focus" list of marginal homes. How nursing homes became the residence of choice for severely challenged children is at the core of the Justice Department's battle with the state. Florida, the DOJ said in a letter, "has planned, structured and administered a system of care that has led to the unnecessary separation and isolation of hundreds of children in nursing facilities." Agency administrators have "systematically" cut services for parents, making it almost impossible for them to care for their sick children at home, the letter says. At the same time, they've agreed to pay nursing homes a more generous rate for children than for elders, creating an additional incentive.
The state agency in charge of caring for some of these particularly fragile children has defended the practice of placing them in nursing homes.
In a statement to the Herald, the agency said the facilities must meet different criteria than nursing homes that serve only older adults.
But the agency’s own inspectors found children at one Orlando nursing home gathered around a television watching cartoons one morning, watched by caregivers who didn’t interact with them, the newspaper reports. One frail resident who was supposed to receive daily visits to prevent social isolation never got them. A child with cerebral palsy, seizures and required a feeding tube who was supposed to have daily visits for socialization and stimulation, home schooling, and music received none during one two-day inspection. Instead, observers found only a TV tuned to a news program.
And the Herald report goes on and on, with stories of a child whose wheelchair was broken sitting in a stroller and a Disability Rights Florida report on a 3-year-old in one institution who was never taken to a park or even for a walk around the block to meet other children. The advocacy group wrote that the boy was at a high risk of developing Reactive Attachment Disorder, which can leave children unable to form emotional bonds.
The Justice Department outlined a litany of recommendations to address the situation, and it noted that Florida rejected about $40 million in federal grant money that could pay for some of the costs of caring for these children, because the money is related to the new federal health-care law. The state denies that this money would have been available to work with the children in question. The feds also said nursing homes have been encouraged to serve more children and provided with money to expand their capacity to do so.
“During our investigation, we found no evidence of a comprehensive, effectively working plan designed to reduce the state’s reliance on nursing facilities for individuals in this population,” Assistant Attorney General Thomas Perez wrote in a September letter. “Instead, children and adults languish for years in nursing facilities without meaningful opportunities to transition to more integrated settings.”
A version of this news article first appeared in the On Special Education blog.