TAMPA, Fla. (WFLA) — You expect to see elderly people in nursing homes, not kids, but children in Florida have long been taken from their families and sent to live in nursing homes. Now a federal judge has ordered the state to change the way the state treats children with complex medical needs.
For years, the state has ordered that some disabled children must be placed in nursing homes, rather than providing care and support for them to remain at home with their families. A judge has since determined Florida’s policy violates the Americans with Disabilities Act.
Records show about 140 children are currently living in nursing homes in Pinellas and Broward Counties. It boils down to money.
“The neurologist wanted me to basically, at my age he said you need to sign your children away to me have me put them in the facility that I run,” said mother Tori Mueller.
Mueller adopted 7-year-old Sebastian and 12-year-old Hazel when they were babies. They both have a genetic neurological disorder, so their doctor wanted to institutionalize them.
“There’s not going to be anything that you could do with these children,” said Mueller. “These children are basically ruined.”
Kids with medically complex needs have long been placed inside adult nursing homes throughout Florida. The Justice Department investigated and found the state Agency for Health Care Administration pays these facilities an extra $500 per day per child, which is double the rate it receives from the state to serve elderly people.
“They were being warehoused in nursing homes, and the reason why was more shocking,” said Attorney Matthew Dietz, Nova Southeastern University Professor. “The reason why is because the state wouldn’t provide parents the services they needed at home in order to keep their kids at home.”
The state was first sued over this issue by attorney Matthew Dietz in 2012. He represented nine families whose kids were placed in these facilities by the state.
“I had two based in the Tampa Bay area and once we represented them, they were able to get the services that they needed in order to get out of the nursing home,” said Dietz.
One of those kids is Andi. Andi died shortly after he got out of the home.
“The mom continues to speak to me this day and says the greatest blessing that she ever had was the ability to care for her child, for that brief amount of time in her home, and with her family,” said Dietz.
There are 1,800 more kids considered at risk of being institutionalized.
“I am their advocate, I’m their parent, I’m the one that stands up for them because no one else will,” said Mueller. “That’s my job to do that. I’m not about to let my children just go and be in a facility that they don’t belong in.”
The U.S. Department of Justice got involved in the fight. After a 12-year legal battle, a federal judge ruled Florida was in violation of the Americans with Disabilities Act, saying the state forced kids into nursing homes to live segregated lives against their parents’ wishes.
The judge ordered the state to provide at least 90% of the private-duty nursing hours necessary to care for kids who are transitioned out of nursing homes and back into their communities. The state is fighting back asking an appellate judge to block the federal judge’s ruling, saying it would be impossible to find enough private nurses needed to care for these kids at home.
“The court found in a long decision that the state was systemically, denying these children, their rights to live out in the community,” said Dietz.
The judge appointed a monitor who is in the process of developing policies and procedures for better recordkeeping and recently released a report.
“What was notable in the monitors finding was the fact that the state didn’t quite realize the harm that comes to families when private duty nursing services are not provided,” he said.
So, the state would rather put vulnerable children in these facilities than provide a private home nurse to keep the child at home. Dietz said the report also found the parents of the 140 kids who are still in nursing homes don’t have adequate housing. For a child to be in a nursing home, he says it costs about $1,000 a day.
“It is so much cheaper to provide a subsidy, a grant, a voucher for housing so the families can afford to live a decent housing so they can have their children at home rather than the state wasting millions of dollars putting these children up and essentially in a hospital ward,” said Dietz.