The state is very unhappy about the lawsuit. AHCA Secretary Liz Dudek released a statement Monday disputing the allegations, saying, "Florida has made many improvements in its already strong program of caring for medically complex children and helping their families cope with their everyday challenges. Today's Obama Administration action shows that Washington is not interested in helping families improve but instead is determined to file disruptive lawsuits with the goal of taking over control and operation of Florida's Medicaid and disability programs."
The agency says it has moved 31 kids out of nursing institutions and that it has improved the level of care for others. But Sue Root thinks most of the state's effort has been window dressing. Her daughter Amy, then 9, was hit by a truck while riding her scooter in 2010 and nearly died. Sue, a former nurse, performed CPR on her in the middle of the street and revived her. But Amy suffered from a traumatic brain injury and now requires round-the-clock nursing care. She's one of the at-risk kids covered by the DOJ lawsuit. Root has been fighting with the state for three years to keep Amy out of an institution and at home with her, but Florida has continued to try to pare back her private nursing services.
The battle enrages her. She points out that if she'd taken her daughter off life support, as she was encouraged to do in 2010 after the accident, she would have been criticized for that. Florida was, after all, the home of Terry Schiavo. But now that she's trying to care for the daughter she saved, it's been one war with bureaucrats after another.
Amy Root, a medically fragile child at risk of being sent to a nursing home Courtesy Sue Root
After the federal prosecutors got involved in Florida, that battle was supposed to end. But just a few weeks ago, Sue says the state again moved to cut Amy's nursing hours back from 24 to 20. "I think they're trying to make it look like they were fixing things so everybody would forget about it," she says, noting that she is ecstatic about the DOJ suit. "Now [state officials are] going to be held accountable, and that's what the children need."
The DOJ intervention has already had other impact in Florida by bringing heightened scrutiny to the facilities to which disabled kids have been confined. Late last year, I visited Lakeshore Villas, a Tampa geriatric nursing facility where Abdel Rahman Gasser, then 17, was living because his family couldn't get in-home services to care for him in their apartment. In June 2011, Gasser had suffered a traumatic brain injury in a car accident that left him largely immobile and unable to care for himself, and he has been in the nursing home ever since leaving the hospital.
Lakeshore Villas, which kicked me out when I visited Gasser with his father, was one of the worst nursing homes in the state, and state and federal regulators have repeatedly fined it for endangering residents. Last year, according to the Miami Herald, state inspectors—spurred by DOJ—investigated the facility and found that:
Lakeshore "failed to provide meaningful, chronological age and developmentally appropriate structured activities" for two of the three children the agency observed closely on March 7, the day of an inspection. Entire days went by, the report said, without any documentation of activities staff entering the pediatric ward. One visit lasted less than 30 minutes.
Earlier this month, federal regulators cut off all Medicaid and Medicare funding to the facility, which effectively shut it down. The kids in the facility will be moved elsewhere before it closes for good in early August. Gasser's father, Gamel, is scrambling to find a new home for his son. He says the state has been telling him that he "might" be eligible for a program that would let Abdel come home, but the details have been vague and confusing, and what he calls offers of "just hope and air. And I cannot make decisions on that hope. I wish there was a definite answer." One thing he doesn't want to do is put his son in another nursing home. In theory, the DOJ lawsuit might help. Whether that help will come soon enough for Abdel is an open question. But it's clear that's what prosecutors are hoping for.
In a statement Monday announcing the suit, Eve Hill, deputy assistant attorney general for the civil rights division said, "Florida must ensure that children with significant medical needs are not isolated in nursing facilities, away from their families and communities. Children have a right to grow up with their families, among their friends and in their own communities. This is the promise of the ADA's integration mandate as articulated by the Supreme Court in Olmstead. The violations the department has identified are serious, systemic, and ongoing and require comprehensive relief for these children and their families."