By Jan Pudlow
Haley Van Erem first learned that 221 children live in Florida’s nursing homes as a third-year law student sitting in a classroom at Florida State University College of Law’s Public Interest Law Center.
“Very shocked” is how she describes her reaction.
“The hidden children” is how Clinical Professor Paolo Annino refers to these “medically fragile” children, tucked into pediatric wings of Florida nursing homes designed for geriatric patients, like the grandmother Van Erem used to visit when she was a girl.
How these children wound up on ventilators and feeding tubes and tracheotomies varies: near drowning in swimming pools, being shaken as infants, infantile cerebral palsy, car crashes, genetic disorders.
What they have in common is the need for nursing care 24/7, and some of them have families who want them to live at home if they are afforded sufficient services.
“The saddest part of all is not that these children have nowhere to go. That’s what a lot of people would assume,” Van Erem said. “A lot of families are asking for support and want their children at home. Our goal is to get these children back with their families, with adequate support.”
On September 15, Van Erem traveled with Annino for her first visit to meet two children in a Tampa nursing home who are their clients. The children are also plaintiffs in a class-action lawsuit filed in March in the U.S. Southern District of Florida, Ft. Lauderdale Division, by Annino’s Public Interest Law Center, Miami disability rights attorney Matthew Dietz, and The North Florida Center for Equal Justice, Inc., attorneys Jamie Ito, Edward Grunewald, and Jill Zaborske (Case No. 12-60460-CIV; T.H. et al. v. Elizabeth Dudek, secretary of the Agency for Health Care Administration, et al.)
That recent hands-on visit, Van Erem said, packed a wallop in elevating the legal issues from academic to advocacy.
“I was not expecting to see so many children there. There was a large room with a lot of children, all in their wheelchairs. Some were directed toward watching TV, and others were gathered in the halls around the nursing station. When we walked into the large room, some of the children looked at us and smiled. I am very glad I went. It was difficult, but it was really nice to put faces on our plaintiffs. It drove home to me the importance of this lawsuit,” Van Erem said.
“After visiting, having seen these children, I can’t say that for everyone, but a lot could live in the community and live at home with their families. And there would be better outcomes for the children themselves and for their families, because their families want them home.”
State Officials Respond
Back at the law school on September 18, the main topic for Professor Annino’s class was to discuss the strong reaction from state officials who disagree with a U.S. Department of Justice investigation that backs up the lawsuit’s claims.
In a conference call with the media on September 12, AHCA Secretary Dudek said: “We believe and have always believed and operated under the belief that everyone, including the fragile population of children, deserves to be cared for in the least restrictive environment. That means if we can have them at home, and they can get the medical services at home, that’s where we want the children to be.”
Dudek said she has sent staff out to visit every nursing home housing children, and reach out to every parent “so that they can be aware of what’s available to them and to see if their decision has been the best decision for their child.”
Dr. John Armstrong, Florida surgeon general, said: “We have a process for a medically fragile child that is designed to find the least restrictive setting that will meet the medically fragile child’s needs. . . . We remain committed to collaboration to ensure that all of Florida’s medically fragile children are in appropriate settings, based on the needs of the medically fragile children and on the choices made by parents and guardians.”
They were responding to a September 4 letter from Assistant U.S. Attorney General Thomas Perez to Florida Attorney General Pam Bondi, detailing findings of a DOJ investigation of nursing homes serving more than 200 children in Miami, Ft. Lauderdale, Orlando, Tampa, and St. Petersburg.
The DOJ investigation concluded that the state’s policy violates the Americans with Disabilities Act and violates the children’s civil rights. The 22-page letter notes that Florida nursing homes are receiving $500 a day to take the children, more than double what the state pays nursing homes to care for the elderly. And Perez noted that, last year, Florida “rejected nearly $40 million in federal dollars designed specifically to support individuals transitioning from nursing facilities and other institutional settings to the community.”
“Hundreds of children are currently segregated in nursing home facilities throughout Florida,” Perez wrote. “They are growing up apart from their families in hospital-like settings, among elderly nursing facility residents and other individuals with disabilities. They live segregated lives — having few opportunities to interact with children and young adults without disabilities or to experience many of the social, educational, and recreational activities that are critical to child development.”
On September 14, the general counsel for AHCA, Department of Health, and Department of Children and Families sent a response letter to Perez: “The State of Florida fundamentally disagrees with the letter’s factual assertions and legal conclusions. The State fully complies with all relevant laws and regulations concerning the provision of medical services to children and young adults, including Title II of the Americans with Disabilities Act, as interpreted by the Supreme Court in Olmstead v. L.C.”
A Long Legal Showdown
“I read the state’s responses,” Annino said September 18, shortly before his class convened. “The state concedes that Florida has over 200 children in nursing facilities. The state does not deny that the vast majority is stable and can live in the community. Also, the state fails to mention the 3,500 fragile children in Florida who are at risk of being forced into a nursing home because of the state policies to reduce Medicaid services (home health services) to fragile children. Also, the state’s response fails to mention the enhanced Medicaid fee of $500 per day for placement in geriatric nursing facilities.
“So I look at the state’s responses as the beginning of a long dialog, where at the end the state will accept that it does not make moral, legal, or economic sense to place fragile children, who are stable and who can live in the community, in geriatric nursing homes.”
Annino’s law students will be part of that dialog, learning every step of the way.
Recent FSU law graduate Carolyn DeVita, a graduate fellow at the Public Interest Law Center, whose salary is funded by a Florida Bar Foundation grant, has been working to help these medically fragile children.
DeVita had worked on other projects at the advocacy center and had little knowledge or interest in the Fragile Children Project, until she did her first intake case.
“It changed everything for me,” DeVita said. “I had no idea families were dealing with these kinds of issues. I met with a mom and her child on a ventilator. I saw how much the mom cared about her son. She was so connected with him and fighting for him. It was so heartwarming, and, at the same time, so incredibly sad.”
While the mother lived in South Florida, the state gave her almost 22 hours of skilled nursing care so that she could keep her son at home. When she moved to Tallahassee and moved in with her husband, those hours were cut to 10, DeVita said.
“She has everything in order now. We got involved,” DeVita said. “It was one of our first clients in rule challenges.”
But many other families await relief, says Annino.
Even the Most Saintly Parents Need a Lot of Help
“Here at the law school, we have the Health Care Access Project, where law students represent children primarily on Medicaid trying to get services. We do a lot of administrative hearings and rule challenges,” Annino said.
About seven years ago, Annino said, a family of a medically fragile child contacted the clinic for representation, and the need was great enough to create the Fragile Child Project.
“These children were getting services at home, so they could live with their families. They needed private-duty nursing, where the nurse comes to the house. More and more what was happening was Florida was reducing the hours,” Annino said. “We started having clients who had 24 hours a day of private duty nursing, then they got 20 hours, and it went down to 18, and 16, and eventually down to six hours. It’s hard for the parents to sleep or work. We saw these patterns over and over again.”
Annino tells about Christopher, one of the children in the lawsuit, described as C.V.
“He has Hurler Syndrome, a genetic disorder. He has a trach for breathing, and it gets plugged every five minutes. He’s the cutest little kid, maybe 8. He’s mobile. He laughs. But he has to be watched all the time. Thirteen different times, the State of Florida has tried to reduce his care. What we learned is even the most saintly of parents can’t do it without help, and the kids wind up in nursing homes. The parents tell Medicaid they can’t do it anymore, and Medicaid says send them to the nursing home.”
What do the children want?
At first, DeVita admitted, she struggled to understand what is best for the child. But she watched families invite their medically fragile children to sit at the dinner table and meet with other relatives, and “you can see some sort of difference in the child.”
She’s witnessed the smile on a child’s face when her mother massages her legs while watching a movie with the whole family gathered in the living room.
DeVita spent a lot of time with T.H., a 16-year-old girl with medical complications resulting from shaken baby syndrome, who lives in a 72-bed children’s wing of a 152-bed geriatric nursing facility in Plantation.
“I kind of got to know her, and this is going to sound weird, but there are certain places she wanted to be touched as a way to communicate,” DeVita said.
“I got to know her on an individual level and connected with her. Normally, she was nonresponsive, just laying in her bed and not opening her eyes at all. I could get her to smile rubbing her behind her ears. Just seeing her smile with a tickle, and a kind of laughing, with her eyes focused on me. I could get her to open up and make direct eye contact. All of these children deserve that.”
“With most of these children, it’s our interpretation,” Annino acknowledged. “When we see them smiling with mom, and the child laughs with dad, we say, ‘He wants to be home.’”
But, as one nursing facility staff member told DOJ investigators: “Once we get the children, very few of them go home.”