The Wrong Way to Help Disabled Kids
Many people want to abolish Residential Treatment Facilities. But for some severely disabled kids, being away from home is best.
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My friend Kim has a 13-year-old daughter, Ella.1 Ella has Coffin-Siris syndrome, a spectrum disability that includes intellectual disability, missing fingernails on pinkies and little toes, and behavioral manifestations in 85% of cases. For Ella, these included punching, kicking, pulling hair, biting, eye-gouging, choking, and slicing her hands with paper so she was always bleeding from dozens of tiny cuts.
Finding the right educational setting for Ella has been a challenge, to say the least. Her journey has taken her from a so-called “inclusive” classroom, where she sat separately from the other kids to do her work, to an autism school, where she did no academics at all and her aggressive behavior actually worsened. Kim thought she found the perfect solution in a charter school that offered an inclusive classroom with full-time support—until one of the aides slapped Ella across the face during a meltdown. Ella, who is nonverbal, typed on her iPad that she was never going back and wouldn’t come out of her room for two weeks.
Kim was desperate. The local school for severely autistic kids recommended by her district refused Ella admission after she attacked staff during a site visit. The therapists that worked with Ella at home had all quit, one after Ella punched her so hard that she burst her eardrum. And Kim herself was always bruised and scratched. “It’s simply not tenable to get beat up every day,” Kim told me. “Nobody should live like that.”
Kim was determined to find something that her school district told her didn’t exist: a school that specialized in the dually diagnosed—kids like Ella with autism and mental health issues—and that could treat her daughter’s violent behavior while providing a diploma track. And she did find one—a Residential Treatment Facility, or RTF, halfway across the country. Kim had to sue her school district to pay for the placement, but they didn’t put up much of a fight. They had nothing else to offer Ella anyway.
What is an RTF?
The acronym RTF seems self-explanatory: a place where people (often children) live while they are receiving treatment for something. In practice, this covers a wide range of scenarios, from “troubled teens” to profoundly autistic students, many of whom routinely and significantly harm themselves and their caregivers.
As the parent of a profoundly autistic adult son, my interest lies in this latter population. I have great sympathy for parents desperate to keep their neurotypical children from wrecking or even ending their lives through truancy, vandalism, or drugs. But I can’t say whether residential treatment is necessary or appropriate for such kids. I do, however, know many families who made the heartbreaking decision to send their profoundly autistic kids to RTFs as the “least-worst out of terrible options”—as Kim described it—only to watch them flourish in intensive, highly structured environments that could never have been duplicated at home.
Unfortunately, 2024 has not been a good year for RTFs. In March, Netflix premiered the first episode of The Program: Cons, Cults and Kidnapping, which recounts the traumatic experiences of filmmaker Katherine Kubler at the Academy at Ivy Ridge, a New York RTF, in 2004. Kubler says that her father shipped her off to Ivy Ridge after she was expelled from her Christian boarding school for being caught with a Mike’s Hard Lemonade. There, she and her peers were frequently subjected to physical restraints, solitary confinement, and food deprivation—strategies that were designed to “break” the kids. “They tried to murder children’s souls here,” Kubler reports from the now-abandoned campus, where she returned to film her documentary.
Two months later, ProPublica launched its own series exposing claims of abuse and neglect at Shrub Oak, a different New York RTF that treats autistic children from all over the country. The reporters uncovered “accusations of possible abuse and neglect: unexplained black eyes and bruises on students’ bodies, medication mix-ups, urine-soaked mattresses and deficient staffing.” Then, in June, the Senate Committee on Finance released the report of their two-year investigation into RTFs, whose title basically sums up the building public consensus on these programs: “Warehouses of Neglect.” The Committee concluded that “children suffer routine harm inside RTFs… includ[ing] sexual, physical, and emotional abuse, unsafe and unsanitary conditions, and inadequate provision of behavioral health treatment.”
Needless to say, the tragic outcomes documented across these platforms are completely unacceptable and demand serious attention. RTFs struggle with the same staffing challenges and—for those that depend on state and federal funding—low reimbursement rates as other providers in this sector, like group homes for intellectually disabled adults or nursing homes. No doubt some private pay outfits—like the one Kubler’s father paid $60,000 to basically incarcerate her for fifteen months—are little more than predatory scams and should be shut down.
But lost in the pile-on has been one simple truth: some children can’t be safely cared for at home. As Senator Ron Wyden, Chairman of the Finance Committee, threatens to defund RTFs, and as ProPublica celebrates its impact with a banner on its website announcing that three states are no longer sending students to Shrub Oak because of its reporting, it’s critical to ask: what about those kids and their families?
“I love him so much, but I’m also scared of him”
Paul, 22, recently graduated from Shrub Oak—the autism school at the center of ProPublica’s exposé. His mother Sarah was “livid” at the series. Although the reporters did nominally include snippets of interviews with satisfied parents, the five pieces about the school were overall extremely critical. “I’m not saying Shrub Oak is perfect—no place is perfect, home isn’t perfect,” Sarah said. But she believes balanced coverage would have emphasized how transformative the school has been for many families, including hers.
Paul’s path, like Ella’s, involved multiple educational placements. When he was nine years old, he was expelled from public school because of his aggression and enrolled at a local private school for severely autistic and disabled students. He did well there for years, but his behavior worsened as he got older, compounded by school disruptions caused by COVID. He hit himself in the face with such force that his eyes swelled shut; on another occasion he gave himself a brain bleed. He put his head through a window and bit his own arms. And his meltdowns endangered the entire family: Paul choked his brothers, attacked Sarah while she was driving, ripped the skin off her shoulder, and left her covered with bite marks and bruises. With a four-inch and almost hundred-pound disadvantage, Sarah couldn’t physically manage her son. These rages precipitated at least ten hospitalizations—not that the doctors did anything besides restrain him to the bed. Paul has tried over 80 medications over the course of his life, but none helped very much. By the time he was 20, no psychiatric hospital in his state or adjacent states would even take him.
Paul’s first residential placement was brief. That school didn’t provide one-to-one supervision, and Paul eloped. He was kicked out after three weeks. “Shrub Oak was the only school in the entire country that would take him after that,” Sarah told me. He enrolled in December 2020 and remained there until he aged out this past summer.
“Paul did great at Shrub Oak,” Sarah said. “He worked on a lot of life skills and job skills—he learned how to mow the lawn, he ran a lemonade business. We knew Paul was doing well there the first visit—when it was over he walked happily back into the building. He didn’t say, ‘Home, please’ or ‘Car, please.’ And another kid came up to me and said that he was Paul’s buddy. He was accepted there by the other kids, that meant everything to me.”
The most impactful change was Paul’s aggressive behaviors, which had largely resolved by the time he graduated. “He probably had four or five behaviors the whole time he was at Shrub Oak, as compared to daily aggressions at home,” Sarah said. She credits this to several features of Shrub Oak’s programming, including sensory rooms, predictable routines, and consistent male staff who were able to safely manage those meltdowns that did occur. Shrub Oak has a consulting psychiatrist who discussed options with her, but because the intensity and duration of Paul’s behaviors dropped so much, no new medications were recommended.
Sarah knew her home state would have nothing similar for Paul when he aged out, and she spent most of the time he was at Shrub Oak scouring the country for intentional communities for profoundly autistic adults. When she finally found one that could both meet his needs and offer him a spot—which was very difficult, due to ideological biases against larger settings for intellectually and developmentally disabled adults that have led many states to prohibit them—she and her husband picked up and moved. “It was because Shrub Oak was so successful at reducing Paul’s behaviors that the new program could take him, and he’s thriving there,” Sarah explained. Not that her feelings are uncomplicated: “There’s so much guilt in this … I love this kid like nothing I could ever explain, I never wanted him to go to residential. But sometimes you have to love your child enough to get them the help they need.”
The Reverse Field of Dreams Fallacy
How best to improve America’s RTF programs is not at all obvious. The lack of licensing that ProPublica highlights in every one of its Shrub Oak articles as a sure sign of malfeasance was, for Sarah, a positive attribute that allowed the school to better individualize programming and free staff members from onerous paperwork. It was the licensed facilities that had failed her son in the past: the residential school from which Paul eloped because of inadequate supervision and which insisted he eat the same meals as everyone else, even though his diet is extremely restricted; the potential group home that dismissed Sarah’s concerns about elopement and refused to let her pay to install a fence, even though there was a busy highway adjacent to the property.
A more precise classification system would be a good place to start. Simply put, the same term—Residential Treatment Facility—shouldn’t be used to describe, on the one hand, a private pay facility for oppositional but otherwise completely neurotypical teens, and on the other hand, government-funded centers for profoundly autistic minors who require intensive, round-the-clock care, not only to keep them from hurting themselves or others, but also to support activities of daily living, including toileting, showering, and dressing. Not to say that both populations don’t deserve appropriate treatment. But what they require is wildly different at every level, from programming to expertise to infrastructure. Conflating them just muddies an already very complicated issue.
More fundamentally, the problem with the current discourse surrounding RTFs is the implication that they should all be closed, that the model itself is bad. If the Senate Committee on Finance is really concerned about kids being separated from their families and their communities, as they write in their report, they should realize that what we need are more RTFs, not fewer. The most alarming thing to take away from this entire debate is the fact that Shrub Oak was the only place in the entire country that would take Paul, that both Paul’s and Ella’s families had to send them to programs a plane ride away. Is there any greater evidence of how our disability service system is failing those who need it most?
Three years ago, I described what I called “the reverse Field of Dreams fallacy” in disability policy. It’s definitely not a name that will age well—for Millennials and Gen Z-ers, Field of Dreams was a popular 1980s movie about a farmer… and the ghosts of dead baseball players… in Iowa—actually, the plot isn’t important. All you need to know is that the tagline of the film was: “If you build it, they will come.” And I can still think of no pithier phrase to sum up contemporary attitudes towards disability policy than “If we don’t build it, they won’t come”—the increasingly pervasive assumption that we don’t actually need intensive, disability-specific residential programs, like RTFs, because everyone with intellectual and developmental disabilities can be best supported at home. Conversations about improving RTFs are important and necessary. But they need to start from the premise that this model is a critical component of the continuum of care that all the Ellas and Pauls and their families need and deserve.
“Ella needs more than just me to thrive”
It’s been about fifteen months since Kim made the decision to take Ella to an RTF. Today, “it’s going incredible,” she told me. Ella is reading at grade level (although still struggling with math) and, for the first time in her life, she has friends. “We’ve seen her with the girls, and they hug each other, and they role play based on a TV show they like. She’s learning to share—as an only child, she was never very good at that. So she’s learning how to be a social being.”
Most importantly, Ella’s violent behaviors have dropped significantly: “When she first started, Ella was having 140 physical aggressions a month, and now they’re down to under 20. And those are much less severe.” Even Ella understands how much the RTF is helping. The last time Kim talked to her about a timeline for returning home, Ella typed, “I think I need some more time here, I need more time to learn how to not explode.”
Ella’s success has forced Kim to “rethink what it meant to parent,” she said. “Of course I miss her. But some kids need more than any family can provide in isolation. Parenting can also mean sharing the responsibility for care. We work together with Ella’s staff to give her the best opportunities. And that’s a gift.”
Amy S.F. Lutz is a historian of medicine at the University of Pennsylvania in Philadelphia and Vice President of the National Council on Severe Autism.
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This reminds me mental hospitals and how they became toxic. I grew up small white-collar city that had a mental hospital. I volunteered there when I was a teenager, and though the residents could be challenging, it was quite rewarding. The best part was that there was a truly caring staff that felt their job was meaningful and important. They worked hard to provide good care and keep the residents busy and happy. I think that for the most part it worked very well and provided good care at a reasonable cost (the building was a bit rundown, the residents could be quite tough on it, but the important thing was the commitment of the staff). I think of that when I see homeless people with mental health issues living in terrible conditions with few to help them, and wish we still had such institutions. Just because a few are bad doesn’t mean they all are.
Thank you for this. The life of someone very close to me -- and no doubt the lives of others around him as well -- was saved by a RTF. If ProPublica and Ron Wyden succeed in their ill-conceived ideological effort to delegitimize and abolish RTFs, the blood of many people who otherwise could have had happy, or at least bearable, lives will be on their hands.