UnitedHealthcare’s Secret War on Autism Therapy: A Mother’s Fight for Her Son’s Future
A photograph captures Benji, a ten-year-old boy, at home with his mother, Sharelle Menard, on December 4, 2024. The image, taken by Annie Flanagan for ProPublica, belies the intense struggle they are facing. There was a time when Menard feared her son would never speak, a time marked by unrelenting screaming and frustration stemming from Benji’s inability to communicate. His diagnosis of severe autism at nearly three years old brought a wave of both despair and hope.
Hope arrived in the form of applied behavior analysis (ABA) therapy, a specialized treatment that gradually unlocked Benji’s communication. Two years into therapy, the first small words emerged, “bubbles” among them—a moment celebrated with a dollar-store bubble machine and hours of shared joy. Menard envisioned a future for Benji far removed from the bleak realities she’d heard about other children with similar diagnoses, children who remained trapped in institutions. That hope, however, is now threatened.
UnitedHealthcare, Benji’s insurer, has begun denying him the therapy hours his clinical team deems essential for maintaining his progress. This isn’t a case of individual misjudgment; it’s part of a deliberate, internal cost-cutting campaign targeting the rising expense of autism treatment for children nationwide.
ProPublica’s investigation uncovered Optum’s, UnitedHealthcare’s mental health benefits division, internal strategy. Documents reveal a calculated plan to restrict access to ABA therapy, despite acknowledging it as the “evidence-based gold standard treatment.” The company’s concern isn’t the children’s needs, but its escalating costs driven by the fourfold increase in autism diagnoses over the past two decades.
Optum’s strategy involves several tactics: preventing new ABA providers from joining its network, terminating existing ones, especially those deemed “cost outliers,” and rigorously scrutinizing the “medical necessity” of individual treatments. The impact is devastating: in some states, this could affect over two-fifths of in-network ABA providers and up to 19% of patients.
This targeted approach focuses on children covered by state-contracted Medicaid plans. The fixed funding model for Medicaid incentivizes insurers to reduce costs, as any savings can be retained by the company. UnitedHealthcare manages Medicaid plans for over six million people, including nearly 10,000 children with autism, with projected ABA therapy costs of approximately $290 million this year. Optum, whose parent company, UnitedHealth Group, reported $22 billion in net profits last year, is actively pursuing cost reductions through these restrictive measures.
Experts interviewed by ProPublica expressed outrage, condemning the tactics as “unconscionable and immoral.” UnitedHealthcare and Optum declined to comment, citing the recent death of the company’s CEO.
Benji’s therapists determined he needs 33 hours of weekly therapy. Without it, the consequences are severe: outbursts, aggression, and regression. Optum’s denial—based on the premise that after six years, more progress should be evident—is fundamentally flawed, according to autism experts. They emphasize that ABA therapy is often lifelong, aimed at skill maintenance and preventing regression, not a quick fix. This contradicts Optum’s own clinical criteria, which cites guidelines stating that “there is no specific limit on the duration of a course of treatment.”
Advocates raise serious legal questions, citing potential violations of the federal mental health parity law and Medicaid regulations. The federal government has affirmed ABA therapy as a protected benefit, and states mandate insurance coverage.
Three years ago, Benji was thriving under 33 hours of weekly therapy. His progress enabled him to begin attending school, but the reduction in therapy hours triggered a dramatic decline in his behavior and communication skills, leading to his expulsion from school. His current home-study program, while expensive, has temporarily mitigated the issue.
Despite submitting detailed evidence demonstrating Benji’s need for increased therapy hours—an experiment that inadvertently showed his behavior deteriorating without the intervention—Optum refused to budge. Next month, a state administrative law judge will hear their appeal, but the fight is far from over. Optum’s ongoing efforts to limit ABA access continue, raising serious concerns about the future of children like Benji. The long-term financial consequences for states, burdened by the escalating needs of inadequately treated children, are also significant.
The consequences for Benji and families like Menard’s are profound. The loss of momentum and gains in therapy is deeply worrying. The insurer’s cost-cutting strategy risks not only undermining the progress of autistic children but also exacerbating the long-term costs associated with their care. As Joslyn McCoy, Benji’s therapist’s employer, notes, the constant battle with insurance companies threatens the very existence of private autism care clinics. While the need for ABA therapy remains significant, the access to this critical treatment is being systematically eroded by the very insurers who are obligated to provide it.