The Politics of Autism includes an extensive discussion of autism service providers. Since the book's publication, a big change has consisted of a massive increase in private equity investments.
The law of unanticipated consequences is at work.
[State-mandated nsurance coverage] has revolutionized access to autism services in America, making early intervention affordable for families. The shift, reflected in a recent CDC-led analysis, is striking: Per-child spending by employer-sponsored health insurance plans on young children with ASD increased 51% between 2011 and 2017 (over the same period, spending increased just 8% for kids with no ASD diagnosis). Annual per-child spending on intensive behavioral therapy, i.e. ABA, increased 376% in that period, from $1,746 per child to $8,317 per child; for 14.4% of kids with ASD, spending on that therapy in 2017 exceeded $20,000.bers suggest, insurance reform turned ABA into a big business. The mandates unleashed a gold rush, with large investors working to consolidate the fragmented provider landscape and build up regional platform companies specializing in the expensive, time-consuming therapy. “It’s like vultures now,” says Michi Medley, an Oklahoma-based family advocate and autism professional. “All these companies are coming in, and there’s so many of them, families don’t know who’s who.”
Between 2012 and 2021, the Braff Group, a health care M&A Advisory firm, identified 223 deals done in this sector. Nearly 90% of transactions over the past five years have involved private equity, according to the firm’s proprietary analysis; what Braff calls the most “frenzied” period, from 2017 to 2019, was characterized by PE firms buying up ABA providers at 10 to 15 times their annual profits: Big names like Blackstone, KKR, TPG, and Cerberus have all made investments in the space. One of the Braff Group publications compared investor enthusiasm for autism services to that of “fan boys to the latest Star Wars release.”...
Lorri Unumb, the parent advocate who now serves as CEO of the Council of Autism Service Providers (CASP), remembers being dumbfounded when an industry investor boasted that his company hired a supervising therapist for every 40-50 patients (10-15 is the industry standard). Having been so involved in the advocacy that created the industry’s funding stream, Unumb now feels responsible to ensure quality in the industry. “These kids don’t get a do over,” she says. “You can’t just put a shoddy program out there and waste these children’s most important window to change the trajectory of their lives.”
Another urgent question is whether the autism-therapy workforce is trained and equipped to deliver effective care. The ABA industry heavily relies on two categories of workers: Board Certified Behavior Analysts (BCBAs)—the graduate level professionals who design and oversee a child’s ABA program—and Registered Behavior Technicians (RBTs), the industry workhorses who implement the therapy and work with autistic children many hours a day. RBTs, who are sometimes called ABA therapists, get 40 hours of training for the job, and are supposed to be supervised for 5% of their hours.
In general, the workforce is very young and inexperienced. As of July 2022, there were 57,000 BCBAs in the country, up from 20,000 in 2015, along with 120,000 RBTs, all of whom have been certified since 2014 when a professional certification program was created.
The varied readiness and competence of this workforce worries Erick Dubuque, director of the Autism Commission on Quality, a non-profit accreditation body for organizations offering ABA services. “We have a real serious issue with our training programs,” he told me, explaining that many programs get away with offering the “bare minimum,” despite the vulnerability of the population workers will be serving, because of high demand in the field. In a 2020 study, Dubuque and colleagues identified more than 20,000 additional providers that claim a BCBA credential but don’t actually have one. Individuals who work in the field and spoke with Fortune shared concerns about feeling ill-equipped for the job, which sometimes involves managing difficult situations where they might be kicked, hit, or bitten by a combative child. Others commented on a lack of professionalism among their colleagues, sharing stories in which therapists made fun of their clients’ autistic behaviors.