## The Fight for Benji’s Therapy: UnitedHealthcare’s Secret War on Autism Care
A ProPublica investigation reveals how UnitedHealthcare, the nation’s largest and most profitable insurer, is secretly cutting access to vital autism therapy for thousands of children, prioritizing profits over patient needs.
A photo of Benji with his mother Sharelle Menard, taken on December 4th, 2024, captures a moment of quiet joy. But this image belies a larger struggle. There was a time when Sharelle feared Benji would never speak, his frustration manifesting in relentless screaming. A diagnosis of severe autism at nearly age three sparked a journey of specialized therapy – Applied Behavior Analysis (ABA) – which finally unlocked his communication, his first words a joyful “bubbles,” celebrated with a dollar-store bubble machine. Sharelle envisioned a future for Benji beyond the institutions she’d heard described for children with similar diagnoses. That future is now threatened.
UnitedHealthcare, the insurer covering Benji’s therapy, has begun denying the hours his clinical team deems necessary to maintain his progress. This isn’t a matter of individual assessment; it’s part of a hidden cost-cutting campaign targeting the rising expense of autism treatment for children nationwide.
Internal documents obtained by ProPublica, originating from Optum (UnitedHealthcare’s mental health benefits division), reveal a strategic playbook to limit access to ABA therapy. While acknowledging ABA as the “evidence-based gold standard,” Optum cites the fourfold increase in autism diagnoses over the past two decades as a financial burden. Their “market-specific action plans” include preventing new providers from joining their network, terminating existing ones deemed “cost outliers,” and rigorously scrutinizing the medical necessity of individual treatments, often resulting in reduced hours or outright denials.
This strategy disproportionately impacts children enrolled in Medicaid, a government program for low-income families. States often provide insurers a fixed amount per Medicaid patient, creating an incentive to limit care and retain the remaining funds. UnitedHealthcare manages Medicaid plans for millions, including nearly 10,000 children with autism, with anticipated ABA therapy costs reaching $290 million this year. Optum’s plan, heavily investing in limiting access, aims to save millions in annual expenses.
Experts interviewed by ProPublica are outraged. Karen Fessel of the Mental Health and Autism Insurance Project calls the tactics “unconscionable and immoral,” highlighting the urgent need for this therapy. UnitedHealthcare and Optum declined ProPublica’s requests for comment, citing the recent death of their CEO.
Benji, now 10, requires 33 hours of weekly therapy, according to his therapists, to maintain progress. Optum denied the full hours, arguing six years of therapy should yield greater progress, a claim experts refute, noting the long-term nature of autism and the absence of treatment duration limits in professional guidelines. The consequences of reduced therapy are stark: increased aggression, regression in speech, and expulsion from school. Sharelle was forced to withdraw Benji and enroll him in a costly home-study program.
A controlled experiment at Benji’s therapy center, Aspire Behavioral Health Center, dramatically demonstrated the impact of reduced therapy. When incentives were temporarily removed, Benji’s behavior escalated, resulting in injuries to staff. Even with this evidence, Optum did not change its decision.
Optum’s actions are legally questionable, potentially violating the federal mental health parity law and Medicaid regulations by providing unequal access to mental and physical healthcare. The strategy, targeting states with the highest ABA costs, including Louisiana, may prove ultimately more expensive in the long run, as children may require more intensive, costly care later in life.
Sharelle fears for Benji’s hard-won progress. Even if a pending appeal for the additional therapy hours is successful, the fight will continue, with each six-month authorization cycle presenting another potential battle with Optum, which is actively deploying “care advocates” to challenge the necessity of ABA treatment. Meanwhile, Joslyn McCoy, founder of Aspire, faces a similar fight for each of her nearly 160 patients, many on Medicaid, dealing with denial of care and a growing waitlist of 260 children. Optum aims to exclude nearly 40% of Louisiana ABA providers from its network, potentially impacting 1 in 5 Medicaid-covered children.
The struggle highlights a critical issue: the prioritization of profits over the well-being of vulnerable children, with potentially devastating consequences for both the children and the healthcare system as a whole. The fight for Benji’s therapy is a fight for the future of autism care.