Sharelle Menard once feared her son, Benji, would never speak. Diagnosed with severe autism at nearly 3, Benji began applied behavior analysis (ABA) therapy. After two years, his murmurs transformed into words. Menard dared to imagine a brighter future. Now, that future is threatened.
UnitedHealthcare, Benji’s insurer, has started denying him the therapy hours his clinicians deem necessary for maintaining progress. This action is part of a covert cost-cutting strategy within UnitedHealthcare, specifically its Optum behavioral health division, targeting ABA therapy for children with autism covered under Medicaid.
Internal Optum documents, obtained by ProPublica, reveal this strategy. While acknowledging ABA therapy as the “evidence-based gold standard,” the company aims to curb its rising expenditures driven by the increasing number of autism diagnoses. Optum outlines “key opportunities” to restrict access, including preventing new ABA providers from joining their network and terminating existing ones, particularly “cost outliers.” These actions could force families to find new, in-network clinicians or shoulder the exorbitant costs of out-of-pocket therapy.
This cost-cutting initiative disproportionately affects children covered by state-contracted Medicaid plans. UnitedHealthcare manages Medicaid benefits for over 6 million people, including nearly 10,000 children with autism spectrum disorder, across approximately two dozen states. Optum projects a $290 million expenditure on ABA therapy within its Medicaid plans this year, a $75 million increase from last year. Despite UnitedHealth Group’s substantial $22 billion net profit in 2024, Optum is aggressively pursuing cost reduction by limiting access to crucial care.
Beyond network restrictions, Optum is implementing “rigorous” clinical reviews to challenge the medical necessity of ABA therapy, often authorizing fewer hours than requested. This approach has sparked outrage among mental health and autism experts. Karen Fessel, of the Mental Health and Autism Insurance Project, condemns these tactics as “unconscionable and immoral.”
United and Optum declined ProPublica’s interview request, citing the recent death of UnitedHealthcare’s CEO.
Benji, now 10, requires 33 hours of weekly therapy according to his clinicians. Reducing these hours has resulted in disruptive behaviors, hindering his progress. Optum, however, denied the requested hours, claiming insufficient progress after six years of therapy. Experts argue this rationale misinterprets the long-term nature of autism and contradicts established medical guidelines for ABA therapy, which emphasize individualized treatment duration based on patient needs.
This approach raises legal concerns regarding the federal mental health parity law, which mandates equal access to mental and physical healthcare. UnitedHealthcare’s history of scrutiny towards therapy coverage and its continued use of arbitrary thresholds have already resulted in legal challenges. Restricting ABA therapy more stringently than comparable physical care could violate this law. Moreover, advocates argue that limiting network access may breach Medicaid regulations requiring sufficient networks to provide covered services.
ABA therapy is a legally protected benefit, mandated for coverage by insurance companies in every state. Denying access to medically necessary care is a detrimental solution, experts argue.
The Impact of Denied Care
Three years ago, Benji thrived in 33 hours of weekly ABA therapy. By age 7, he’d acquired a basic vocabulary and his tantrums subsided. However, reduced therapy hours upon entering public school led to behavioral regression and his eventual withdrawal.
Benji’s clinicians at Aspire Behavioral Health Center requested an increase to 33 hours, but Optum denied it, citing insufficient progress. This denial, based on arbitrary duration rather than clinical need, alarmed Benji’s behavior analyst, Whitney Newton. Aspire’s founder, psychologist Joslyn McCoy, is no stranger to insurance battles. Optum subjected Aspire to a payment integrity audit, scrutinizing their practices despite positive feedback during a quality review.
To demonstrate the necessity of Benji’s therapy, McCoy conducted a “reversal to baseline” experiment, temporarily withdrawing treatment. Benji’s behavior escalated dramatically, confirming the therapy’s crucial role. Despite detailed documentation of this experiment, Optum upheld its denial.
An Uncertain Future
Benji continues to receive the necessary therapy hours, despite the denial, due to Aspire absorbing the cost. An appeal is pending, but even if successful, the battle will resume with the next authorization period. Optum is deploying “care advocates” to challenge ABA therapy claims, focusing on states with high ABA costs, including Louisiana.
Experts warn that restricting access to early intervention can lead to increased long-term costs for states as children with unmet needs require more intensive services later in life.
Menard fears losing Benji’s progress. McCoy faces the dilemma of balancing patient needs with an insurer’s refusal to pay, a situation that discourages clinicians and threatens the viability of private practices. Despite potential exclusions from Optum’s network, the demand for ABA therapy remains high, with Aspire’s waitlist growing. The need, McCoy emphasizes, is not going away.
