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The day Dr. Mary Ehlenbach visited the Kidz Korner nursing home for children with complex medical needs, she found a child confined to one of two cribs in a large room. The boy seemed excited to see visitors, and when a caretaker lowered a rail on his crib, he bolted.
“He ran away,” Ehlenbach, medical director of the University of Wisconsin Pediatric Complex Care Program, testified in a recent trial. “He jumped out of that bed and was really flying towards the door.” A staff member “intercepted” it.
The boy’s fate, and that of 139 other Florida children living their lives in institutions, no longer depends on nursing home employees, or even state health administrators, who have fought for 12 years to keep them there. . It now belongs to US District Judge Donald M. Middlebrooks, who is presiding over a civil rights lawsuit brought by the US Department of Justice against state health regulators.
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Middlebrooks appears ready to do what civil rights leaders and children’s advocates have long failed to do: help free the boy and others like him.
“It is my tentative belief that the United States has met its burden of proving that the state of Florida is violating the civil rights of medically complex children residing in nursing facilities,” Middlebrooks said as testimony concluded May 19 after for a period of two weeks. rehearsal.
And the judge made it clear that he wants to act fast. “The United States filed this lawsuit in 2012, and one of the tragedies of the case is that it took more than 12 years to go to trial, which I see as a failure of the judicial system,” Middlebrooks said.
“One way or another,” the judge said, “I hope this doesn’t go on forever… I suppose if I wanted to I could go on litigating and go on with this for years and years, but I sure don’t think so. that fixes anything.
READ MORE: The founder of a nursing home for children does not want the children to be there permanently
In a landmark 1999 decision, the US Supreme Court ruled that it is a violation of the Americans with Disabilities Act and a form of unlawful discrimination to essentially force people with disabilities to live in institutions. Despite that, the Justice Department argued, Florida’s health administrators had erected barriers to parents seeking to raise their children at home, forcing them to send their children to a life of loneliness and isolation in nursing homes.
Florida’s health administrators have fought the lawsuit for the full 12 years. Lawyers for the Agency for Health Care Administration, which oversees medical facilities, say the litigation threatens the very sovereignty of the state and that the agency must be allowed to house, treat and fund care for people with disabilities. without interference from federal regulators.
The state has refused to disclose how much it has paid to Gray Robinson, a defense firm with about 255 attorneys, and has not responded to a request for billing information under the state’s public records laws.
The long-awaited trial began on May 8. Although Middlebrooks heard testimony from several parents, much of the controversy involved a clash of experts.
Dr. Allan Greissman, an intensive care pediatrician at Joe DiMaggio Children’s Hospital in Hollywood, testified for the state that many of the children living in nursing homes were too frail to live outside long-term care facilities and, in In any case, many were so neurologically devastated that they are unable to experience the joy or comfort of living with family.
“I reject the testimony of the state’s expert on this issue … who articulated a number of problematic views,” Middlebrooks, who presides in West Palm Beach, said from the bench, “such as that some children would get no benefit from the family. interaction in a home environment.
“In short,” Middlebrooks said, Greissman “suggested that nurses in institutions are simply better at care. Therefore, institutions are a safer environment and this justifies keeping children in nursing homes.”
Middlebrooks said he found such “testimony neither credible nor persuasive.”
Middlebrooks’ interim findings suggest that he believes Ehlenbach’s testimony, as well as that of other Justice Department experts, was persuasive. Ehlenbach toured the three Florida nursing homes that are accepting pediatric patients, interviewing the parents of the children who live in them and reviewing medical records.
In his May 19 testimony, Ehlenbach painted a bleak picture of life for the 140 children who live, sometimes for life, in long-term care facilities.
“I think I was mainly left with the impression that while they were surrounded by people, they were very much alone,” he said. “They were alone.
“Most of the children we saw in the three nursing facilities were in bed in front of a screen, watching a screen or in wheelchairs, sometimes in the hallways, sometimes in their room with a screen in front of them. Sometimes they were watching, sometimes the screen was just on.”
READ MORE: Parents and feds fight for children in Florida nursing homes
Ehlenbach recounted a particularly disturbing incident from her tour of The Kidz Korner, a 100-bed pediatric unit in a Plantation nursing home: “So they were beds that had metal rails on all four sides… but they were bigger than, like , a typical baby crib,” he testified.
“And one of the kids, when he saw someone come in, people had come into the room, he really perked up and moved around the bed and clearly signaled to us that he wanted to get out of the fenced off bed. And then the person who was giving me the tour came down the side railing, and he ran off.”
A staff member at the nursing home “intercepted the child and unfortunately placed him back on the bed in the compound. And he could tell he was upset. You could tell he wanted to interact with us,” Ehlenbach said. “So that’s something that really, that really stuck with me.”
“Are there any children in a facility that you feel are not medically appropriate to live in a community?” Lauren Latterell Powell, a Justice Department attorney, asked Ehlenbach.
“No,” she answered.
“Is there a child living in a facility whose condition is such that a nursing facility provides the safest place for them to live?
“No.”
“All children with medical complexity who have access to appropriate supports and services in the home and community can live successfully and safely with their families,” Ehlenbach later testified.
During cross-examination, an attorney for the state, John A. Boudet, suggested that Florida sometimes used nursing homes as a “bridge” between when children could be released from the hospital and then live safely with their parents. He asked if Ehlenbach had reviewed the records of the children who were sent home.
“Many of them had been institutionalized for years and years,” Ehlenbach said, “which, to me, would be quite a long bridge.”
Much of the trial testimony touched on the biggest hurdle on that bridge: the profound lack of private nursing in the state. Without adequate home care for children with breathing tubes, for example, many parents have no choice but to keep their children institutionalized.
In her comments, Middlebrooks said the state’s “critical failure to provide families with needed private nursing was the most glaring problem.”
“And this was, of course, underscored by horrific stories I heard from a number of desperate parents about their personal experiences trying to care for their medically fragile children in conditions unthinkable without adequate and reliable nursing help,” the judge said.
READ MORE: ‘They don’t care what’s best for my son. I care’: mom fights in Florida over fragile son
Middlebrooks suggested that the nursing shortage was only an impediment if health administrators did nothing to fix it: “The state has certainly shown that there is a nursing shortage,” he said. “What I don’t think they’ve shown is that at that point they can say, ‘Well, it’s a nursing shortage. We can’t do anything about it.’”
At the conclusion of the trial, Middlebrooks encouraged attorneys for both sides to negotiate an agreement ending the institutionalization of children with serious medical needs in Florida. But he also wielded a stick as well as a carrot: He said he’ll probably order the state to make real reforms if health administrators don’t agree to them first.
On Wednesday, attorneys for both sides filed a status brief telling the judge they could not agree on how to remedy the state’s discrimination: “At this time, the parties do not reasonably anticipate reaching an agreement on language that could be included in a permanent agreement. precautionary measure or that it would be a settlement”.
On May 19, Middlebrooks rejected the idea of retaining jurisdiction over the case long-term and assigning a judicial monitor to oversee the state’s commitment to reform. He said such fixes often just kick the can down the road with little real progress.
“So if we’re going to do something,” Middlebrooks said, “let’s do something that makes a difference.”
The judge said he was “committed to bringing this case to a close, to a conclusion without undue delay. I don’t want to contribute any more to that 12-year delay.”
“I’m not interested in something that goes on for years, because all it does is prolong the problem that the parties have identified in this case,” the judge said. “In my opinion, this case has gone on long enough.”
