Last week, a federal judge ordered the state of Florida to help medically fragile children live at home with their families — a ruling advocates have wanted for years.
Many of the children in question were isolated in nursing homes for months or years, even if their parents had been asking the state to help bring them home.
“Children don’t need to be [in nursing homes]. I am convinced of this after listening to the evidence, hearing from the experts, and touring one of these facilities myself. If provided adequate services, most of these children could thrive in their own homes, nurtured by their own families,” U.S. District Judge Donald M. Middlebrooks wrote in the order.
In addition to the written order and opinion, Middlebrooks, who has been a Judge for the United States District Court for the Southern District of Florida since 1997, further issued an injunction last Friday to immediately help families care for their children at home.
Jade Quinones, now 20, was in a nursing home for four years due to her complex medical requirements, including needing a ventilator to breathe. She says in court documents obtained by The Messenger that she was miserable.
“I was there by myself without family,” Quinones said. She suffered severe depression and anxiety and says she “wanted to fall asleep and not wake up.” Now back at home with her family, Quinones says her mental and physical health has improved.
The U.S. filed a lawsuit against the state of Florida in 2013 on behalf of hundreds of children deemed “medically fragile” or “medically complex.” This means they are under 21 years old and have disabilities that require medical attention on a daily basis, so they often qualify for Medicaid, which is intended to cover medical costs. About 140 of these children are in nursing homes, but the total number of children in Florida who are at-risk for institutionalization is about 1,800, according to case documents.
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In his opinion, Middlebrooks wrote that many parents struggle to get their children out of nursing homes due to confusing and inconsistent discharge requirements and a lack of available at-home nursing, calling it “a maze almost impossible for parents to escape.”
It’s a challenge that parent Sue Root is all too familiar with. Her daughter, Amy Root was 9 years old when she was hit by a car. Root, a nurse, gave her CPR and saved her life, but Amy suffered a traumatic brain injury and is unable to walk, talk or take care of her own basic needs. She is now 22 and her condition has remained the same.
Root says that over the years, when Amy would need care at a Florida hospital, a state social worker would pressure her to put Amy in an institution.
“I was like, absolutely not,” Root, who has training in ICU care and neurology, tells The Messenger. “My daughter's gonna be at home with us, with her family where she's supposed to be.”
Thanks to Root’s background, she was able to navigate the healthcare system and felt comfortable caring for her daughter at home. But she understands why other parents would feel overwhelmed and comply with the state’s suggestions to put a medically fragile child in a nursing home.
“[Caregivers are] overwhelmed with everything,” Root says, referring to the amount of equipment and medications that might be necessary for at-home care. “I can understand why some parents feel [institutionalized care] is their best option. But some of them, when the dust settled, they realized they didn’t want that, and then they couldn’t get their child out [of the institution].”
In Root’s case, Amy was authorized for 24-hour at-home medical care, meaning round-the-clock help from an at-home nurse, but those hours were quickly cut back. Root says that upon receiving the first notification about cut hours, she immediately went to court to appeal the decision.
“I think the part that really disturbed me was that Amy's condition hadn't changed or improved,” Root says. “I asked, ‘What is the basis for this?’”
Other notifications followed, and at one point Amy’s care was cut down to just eight hours.
“The reason was ‘parental responsibility,’ a term they used as a catch-all,” says Root, who has two other children. “But Amy needs eyes on her 24-hours a day. She is high-risk because she has seizures, she needs adjustments to her medications. Her trachea tube needs regular cleaning. They said I could have eight hours to sleep.”
It’s a difficult situation that “the state had made much much harder,” Root says. Eventually, life became so challenging that it prompted a cross-country move for the family, that now lives in Colorado in order to get Amy the in-home nursing care she needs.
“I didn’t want to move, we have family in Florida,” Root says “The kids are eighth-generation Floridians on their father’s side.”
Root says she would consider moving back, but is “skeptical” Amy could get the care she needs, even with the judge’s orders that the state provide the necessary private nursing care.
Middlebrooks also ordered data collection for each child, for the nurses that provide pediatric care, and to raise those nurse’s hourly rates. He also said the state must coordinate care that is “person-centered and individualized.”
Florida's Agency for Health Care Administration (AHCA), which coordinates the Medicaid program that funds the children’s care, strongly disagrees with Middlebrook’s new ruling.
In a statement to The Messenger, an agency spokesperson wrote: “The judge’s failure to understand the law is demonstrable in his order. The court’s conclusion that the State’s actions or omissions force children to live in nursing homes against their parent’s wishes is unsupported and refuted by the evidence presented at trial.”
The AHCA also plans to appeal, but has not yet requested to stay the injunction.
Matthew Dietz, who worked on the case for years representing the children and their families, called the ruling a “sea change.” He explained that historically, the burden had been on the parents to demand at-home care, but the state is now required to clearly offer it to families and to help them set up their homes with medical equipment.
“Part of the reason why [children] weren't going home on some occasions was it took so long to get the durable medical equipment and it took so long to arrange the nursing care,” Dietz tells The Messenger. “Technically the state had the obligation to do this before — from the inception of [the Americans with Disabilities Act (ADA)].”
The ADA was signed by George W. Bush in 1990 to end “the unjustified segregation and exclusion of persons with disabilities from the mainstream of American life.”
But Dietz, who runs Nova Southeastern University’s Disability Inclusion and Advocacy Law Clinic, says Florida’s policy was to deny the parents services over time as they became more skilled at taking care of their children at home. The state would claim parents no longer needed as many hours of at-home nursing and then gradually decrease those hours, just as they did with Sue Root.
And since they couldn’t get nursing help, “you would have parents that would stay up all night with their children to be sure that they didn't die,” Dietz says.
Julie Pagano’s daughter Olivia, now 9, was born without the ability to swallow and sometimes stops breathing in her sleep. Pagano recently testified in the case and told the court that when she couldn’t get a night nurse for Olivia, she would drink caffeine to stay up all night and watch her — then go to work the next day and try to function.
In 2021, Pagano got COVID-19, and on at least one night, had no help for Olivia. Sick with COVID, Pagano accidentally fell asleep. The little girl survived the night, but Pagano was horrified to wake up the next morning and realize she had slept through the night without checking on her.
Middlebrook points to this denial of services as the reason for children's "unnecessary institutionalization."
"The families of medically complex children residing at home are filling in service gaps themselves, which places their children at risk of institutionalization should their families be unable to sustain their children’s care while also working and caring for other family members," he wrote.
Dietz says after ten years of litigation, during which many of the children whom he represented have died, he expects medically fragile children will finally get the care they need and deserve.