The federal justice department claims Florida policies have led to disabled children being unnecessarily housed in nursing homes, away from their families. It’s the same claim brought in two ongoing suits against the state, but Florida health care regulators maintain they’re not violating federal law.
Pamela DeCambra lives in Tallahassee and works for the state of Florida. She says, her 15-year-old daughter, Maria, was 2 when a neurologist diagnosed her with severe cerebral palsy.
“He said, ‘I can tell you right now that she’s probably going to have a lot of respiratory problems. They will get worse. They will not get any better as she gets older. She probably will not ever walk or talk. She probably will never get married. She probably will never have children. But she is very special in her own right, so take her home and love her, and she will bring a lot of happiness to your home’. And that’s what I did," she said.
Maria is entitled to Medicaid to cover the round-the-clock nursing care that her doctor prescribes. But, DeCambra says, she has to constantly fight the state to ensure she keeps her coverage. Even though Maria’s condition never improves, she’s required to reapply for Medicaid every six months. Several times, her nursing care has been approved for only part of the day, not the full 24 hours. When that happens, she appeals to the state Agency for Health Care Administration, but her appeals have been denied several times. She says, the only explanation she gets is that Medicaid services aren’t for the convenience of the caretaker.
“It’s not about being convenient for me, it’s about the fact that my little girl is sick. And she’s at risk of death every day of her life because of the seizures, because of the esophageal spasms," she said. "That’s insulting to me.”
DeCambra and several other parents of severely disabled children are suing the state for failing to keep medical services readily available in their homes. She says, she would never allow Maria to be put in a nursing home, but she sympathizes with families who feel that’s their only option.
Florida State University law professor Paolo Annino, who co-filed the suit on the parents' behalf, says, because of state policies, 3,500 disabled children are at risk of being institutionalized, in addition to the more than 220 who live in nursing homes already. And, he says, nursing homes have an incentive to take them, because, to house medically fragile children, Florida pays them more than twice the amount it does for keeping elderly people. That and other policies have unintended consequences, Annino said.
“When we talk about cutting Medicaid, cutting government—and you hear that over and over again throughout the state: ‘We need to cut government, cut government.” Well, what does that mean for these little children?" he said.
After inspecting six South Florida nursing homes and interviewing several parents, the U.S. Justice Department is threatening its own lawsuit against Florida for, it says, violating the Americans with Disabilities Act. In a letter to the state, the department says Florida must provide medical care in a way that keeps children integrated in society if possible.
But Liz Dudek, secretary for the Florida Agency for Health Care Administration, says she hasn’t heard a single complaint from parents whose Medicaid-approved hours have been cut back.
"We don’t have any type of practice or policy that would do that. I’d be surprised if that was happening, and I’d like to talk to those parents about what’s going on," she said.
Dudek says, her staff is now conducting its own investigation of all nursing homes where children live and plans to contact the children’s parents soon.
But Florida Surgeon General John Armstrong says, the state doesn’t need to wait until the investigation concludes to know it’s doing nothing wrong.
“Our process works to ensure the least restrictive setting is found to meet the needs of the child with the parent’s or guardian’s choice," he said.
The Department of Justice says it will file a lawsuit if the state does not voluntarily change its process. A similar lawsuit in Virginia ended last month with a settlement that requires that state to pay for community-based care through a waiver program.
On Friday, the Florida Agency for Health Care Administration officially responded to the DOJ with a letter denying all accusations made against it. But, it says, state health care regulators "welcome the opportunity to review and address any concerns or issues relating to any specific child or healthcare provider."