A civil rights investigation by the Justice Department charges that the State of Florida has been unnecessarily institutionalizing hundreds of children by placing children with disabilities in nursing facilities designed for elderly patients in violation of the Americans with Disabilities Act.
"Hundreds of children are currently segregated in nursing facilities throughout Florida. They are growing up apart from their families in hospital-like settings, among elderly nursing facility residents and other individuals with disabilities," said a Sept. 4, 2012 letter from Assistant Attorney General Tom Perez to Florida Attorney General Pamela Bondi.
"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." Perez continued.
"The state's reliance on nursing facilities to serve these children violates their civil rights and denies them the full opportunity to develop bonds with family and friends."
However, Florida Health Care Administration Secretary Elizabeth Dudek said the Department of Justice letter was wrong.
"DOJ failed to allow the agency to review or respond to the letter prior to release, which resulted in unfounded and inaccurate allegations," Dudek said in a prepared statement.
The investigation by the Justice Department's Civil Rights Division, which is led by Perez, found that many children are separated by their families and placed in the nursing facilities for years. The Justice Department said that as many as 50 children were held in the facilities for over five years.
The children are referred to as "medically complex" and "medically fragile," suffering from cerebral palsy or traumatic brain injuries from accidents. Many have tracheotomies; some are on ventilators, requiring medical apparatus to help them survive.
One facility staff member interviewed by Justice Department investigators said, "Once we get the children, very few of them go home."
According to the Justice Department's letter, an administrator of one nursing facility said that in cases where both parents are working they do not have the support structure to have a disabled child in their home without assistance.
The letter noted an example of a 5-year-old child, a quadriplegic after a car accident, who had been living in a state facility for three years. The mother wants to bring the child home but has been told the waiting list for community and home-based services was five to ten years.
"I cry all the time thinking of [my child]. … There should be something out there to help children come home," the mother told Justice Department investigators, according to the letter.
But Dudek, of Florida, said the state did not make the decision on where to care for children unilaterally.
"The decision of where a child receives care is up to the parents, in conjunction with the child's doctor," Dudek said. "The agency will never interfere with a family's choice for the location of their child's care. The agency uses a professional, rigorous, federally-approved, quality control system to ensure every family receives the appropriate level of care for their child."
Perez, in the DOJ letter, noted that the state of Florida has rejected federal health care grants to place some of the children in community-based programs.
"The state has … systematically reduced or rejected funding for community based services - in 2011, for example, the state rejected nearly $40 million in federal dollars designated specifically to support individuals transitioning from nursing facilities and other institutional settings to the community." Perez noted in the letter.
The Justice Department visited facilities in Miami, Fort Lauderdale, Orlando, Tampa and St. Petersburg.
"Children, ranging in age from infancy to early adulthood are housed in rooms located along long hallways resembling hospital corridors." Perez's letter said.
At one facility investigators said, "We observed a significant number of elderly residents sitting in the facility's entry hall and portico; children are housed on the second floor, and many only leave that floor for transportation to medical appointments or the occasional outing in the community."
Florida's Agency for Health Care Administration (AHCA) and the Florida Department of Health (DOH) are the agencies that provide services and care to the children with disabilities.
Responding to the Justice Department letter, the Agency for Health Care Administration noted that the findings in the Perez letter closely mirror a class action lawsuit filed by the parents of six disabled children.
"If medical necessity requires the provision of skilled nursing and/or home health aide services for a particular child, the Florida Medicaid program will provide such services up to 24 hours a day, seven days a week." Shelisha Coleman, the press secretary for AHCA, said in a statement.
Coleman said that Florida is seeking to dismiss the class action lawsuit. She said the Justice Department has declined to provide any additional information or documentation as part of the allegations in Perez's letter.
"Consequently, it is impossible for AHCA or DOH to formally rebut the DOJ's factual findings and legal conclusions at this time, " Coleman said in the statement.