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• September 16, 2026

This letter is available as a PDF here.

Dr. Mehmet Oz
Administrator,
Centers for Medicare & Medicaid Services
200 Independence Avenue SW
Washington, DC 20201

Dear Administrator Oz,

The Autistic Self Advocacy Network writes to express our appreciation for the Centers for Medicare and Medicaid Services’ (CMS’) recent toolkit for state Medicaid and CHIP plan administrators regarding Applied Behavior Analysis (ABA). The Autistic Self Advocacy Network (ASAN) is the oldest autistic-led nonprofit working to ensure that autistic people are included in public policy that impacts our lives. Since ASAN’s founding, we have worked to amplify autistic people’s perspectives on autism services and steer the field toward an ethical framework that prioritizes the well-being of the autistic people being treated. This is because autism services remain one of the areas where the perspectives of autistic individuals ourselves are included least. We know that the perspectives of autistic individuals who have received ABA interventions frequently vary greatly from the perspectives of providers and caregivers, with autistic individuals more likely to report negative experiences and lasting adverse mental health outcomes¹. While the potential harms of ABA have been under-researched, empirical analysis demonstrates a link between receipt of ABA services and increased risk of mental health hospitalization.²

Despite the concerns raised by autistic community members, however, utilization of ABA services has skyrocketed in recent years. The growing utilization of ABA services has also raised additional concerns among state Medicaid and CHIP agencies about how best to manage utilization, as well as among state and federal policymakers about the impact these rising service costs have had on state Medicaid budgets. These concerns are compounded by the high intensities frequently recommended for ABA interventions, as well as their delivery costs relative to alternatives. States, meanwhile, have often expressed confusion or uncertainty as to what constitutes permissible oversight for ABA services under CMS’s 2014 EPSDT guidance. For these reasons, the toolkit CMS published is a valuable resource for helping states understand the options available to safeguard autistic individuals, control ABA-related costs, and clarify permissible opportunities to employ reasonable controls on ABA provision.

Given concerns about permissible utilization management, it is extremely helpful for states to receive guidance on their ability to decide what level of ABA coverage is appropriate. We particularly appreciate the attention to the risk that high-intensity ABA could interfere with other developmentally appropriate activities. We agree that states should provide greater scrutiny of high-intensity delivery and that this oversight is especially important given these additional risks to patients. While ABA is the dominant intervention model available to autistic children due to limited availability of alternate models, it does not follow that unlimited ABA hours ought to be covered without restriction or review. As your guidance notes, the best evidence available shows no correlation between hours of ABA received and degree of benefit.³ Meanwhile, the highest intensity levels of ABA commit many more hours than is reasonable to expect of a child while leaving time for other developmentally appropriate activities, including school, play, rest, and family activities. A child receiving 40 hours per week of ABA cannot effectively attend a mainstream school, and will have a reduced ability to spend time with friends and family, participate in after-school activities, and partake in normal childhood activities. In addition to the risks of harm, excessive hour intensity can also substantially contribute to service misuse, as it invites bad actors to view ABA services as a particularly profitable venture. Investigative reports from the New York Times and Wall Street Journal reveal industry practices that inappropriately maximize billable hours rather than providing the best outcomes to the autistic people being treated, such as keeping children from napping because services cannot be billed for while a child is asleep.⁴ It is wholly appropriate for states to apply additional scrutiny to requests to cover 20+ hours of ABA treatment per week. This is not only because of concerns about state budgets and misuse of funded services, but also because, even if services are delivered appropriately, receiving that many hours of treatment each week comes with significant opportunity costs and potential harms for patients.

Along with our support for this additional scrutiny of high-intensity intervention, we do wish to provide some feedback on one recommendation made in the toolkit. While we strongly support tailoring interventions to individual needs and goals, we would strongly discourage the use of diagnostic severity levels to determine the appropriate hours of treatment. As we have noted since they were first introduced in the DSM-5, the severity levels can be blunt and arbitrary buckets. The same autistic person may be assigned different levels by different assessors or at different times, and two people assessed at the same level will frequently not have the same substantive support needs. To the maximum extent possible, authorizations for services should be based on a holistic assessment of the individual autistic person.

We also believe it is vital that, at the same time that states apply warranted scrutiny to ABA, they expand access to other forms of therapy and support for autistic people. Both empirical assessment and the experience of autistic people and their families demonstrate that other options can produce outcomes that are as good or better than ABA⁵, typically at lower cost, and, emerging research suggests, with apparent lower risk of trauma and long term mental health effects.⁶ Autistic people and their families should be able to choose from a wide variety of options, including autism-specific therapies such as DIR Floortime and developmentally-focused approaches, occupational and speech therapies, hands-on care from Direct Support Professionals, and respite services to relieve pressure on family caregivers. Carefirst BlueCross Blue Shield found that developmentally-focused alternatives to ABA had 68% lower per-person costs than ABA, and we have seen unpublished data from one state that covers Floortime as a Medicaid benefit showing substantially lower per-member costs compared to ABA.⁷

ASAN does not endorse any one specific autism therapy; we know that we are a community with varied needs that cannot be met by any single approach, and we know that any therapy can be performed unethically if it is done in a manner that does not prioritize the needs of the autistic person being treated.⁸ However, we believe that autistic people and their families deserve choice. In far too many places, ABA is effectively the only autism therapy available, and this puts ABA providers in a position to insist that families agree to profit-maximizing high-intensity therapy. Given that state expenditure concerns are one of the reasons ABA coverage practices warrant this supportive guidance, we would also encourage CMS to provide additional tools to states to improve patient choice and support states in better supporting these lower-cost alternatives, and to ensure that the guidance provided in this toolkit is not inadvertently used by states to further restrict these services. Going forward, we also encourage CMS to provide additional guidance to states on how best to support these supplemental and alternative services, including guidance on how to avoid misclassifying services such as physical and occupational therapies in ways that could impede access to these vital services.

Sincerely,

Colin Killick
Executive Director,
Autistic Self Advocacy Network

1. Sharon Marshall, N., Russel, Clara, Damon, and Kendra. 2025. “ Autistic Experiences of Applied Behavior Analysis (ABA): Toward Improved Autistic-Centered Supports.” Journal of Social Issues 81, no. 4: e70037. https://doi.org/10.1111/josi.70037 ↩︎
2. Aguirre Mtanous NG, Koenig J, Nikahd M, Effertz SE, Silinonte S, Hyer JM, Hand BN, Bishop L. Mental health outcomes associated with applied behavior analysis in a US national sample of privately insured autistic youth. Autism. 2026 Feb;30(2):484-494. doi: 10.1177/13623613251390604. Epub 2025 Nov 9. PMID: 41206741; ↩︎
3. Sandbank M, Pustejovsky JE, Bottema-Beutel K, et al. Determining Associations Between Intervention Amount and Outcomes for Young Autistic Children: A Meta-Analysis. JAMA Pediatr. 2024;178(8):763–773. doi:10.1001/jamapediatrics.2024.183severity levels can be blunt,2 ↩︎
4. Sarah Kliff and Margot Sanger-Katz. “Short Naps, Long Hours: How Autism Clinics Squeeze Medicaid Dollars Out of Preschoolers.” The New York Times, May 23, 2026. Published online at https://www.nytimes.com/2026/05/23/health/autism-therapy-clinics.html; Christopher Weaver and Anna Wilde Mathews. “The Autism-Therapy Business Is Booming—and So Is the Billing Abuse.” The Wall Street Journal, June 1st 2026. Published online at :https://www.wsj.com/health/healthcare/autism-therapy-insurance-bills-880b9dba ↩︎
5. Sandbank M, Bottema-Beutel K, Crowley S, Cassidy M, Dunham K, Feldman JI, Crank J, Albarran SA, Raj S, Mahbub P, Woynaroski TG. Project AIM: Autism intervention meta-analysis for studies of young children. Psychol Bull. 2020 Jan;146(1):1-29. doi: 10.1037/bul0000215. Epub 2019 Nov 25. PMID: 31763860; PMCID: PMC8783568.; ↩︎
6. Kupferstein H (2020), “Why caregivers discontinue applied behavior analysis (ABA) and choose communication-based autism interventions”. Advances in Autism, Vol. 6 No. 1 pp. 72–80, doi: https://doi.org/10.1108/AIA-02-2019-0004 ↩︎
7. “Expanding Autism Care: Embracing Developmental Relationship-Based Interventions (DRBI).” Carefirst Blue Cross Blue Shield. Published online 12/8/2024 at https://individual.carefirst.com/individuals-families/transformation/complete-care/expanding-autism-care.page. ↩︎
8. “For Whose Benefit?: Evidence, Ethics, and Effectiveness of Autism Interventions.” Autistic Self Advocacy Network. Published December 2021. Available online at https://autisticadvocacy.org/wp-content/uploads/2021/12/ACWP-Ethics-of-Intervention.pdf ↩︎

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