April 20, 2026 | PDF
In a few state Medicaid programs, federal auditors have found a lack of state administrative rules and oversight, as well as likely improper payments made for Applied Behavior Analysis (ABA) services, the most prescribed evidence-based behavioral treatment for Autism Spectrum Disorder. These states’ lack of rules and inconsistent billing-practice guidelines to support providers has led to recoupments, further audits, and additional scrutiny through various lenses. In Illinois, advocates and providers are concerned that without a clear, state-Medicaid-approved ABA provider handbook, the state and its ABA provider network could be vulnerable to the same issues.
Recent reports by both The Wall Street Journal and federal auditors have detailed cases of fraud, waste, and abuse in Indiana and Minnesota. In one case, an Indiana provider collected $340,000 per patient—nearly ten times the national average—by exploiting a lack of state oversight and an unstructured reimbursement schedule.
The Illinois Autism Insurance Coalition condemns fraudulent and wasteful billing and is taking proactive steps to prevent similar cases in our home state – including billing for services not provided, the use of unqualified practitioners, reimbursement not based on cost and reasonable profits, and a lack of proper documentation supporting medically necessary services. Such actions lower access to services by betraying public trust, leading to the shrinkage of service infrastructure.
Now, the Illinois Autism Insurance Coalition argues that the primary culprit in some recent cases is not the treatment itself, but a lack of clear state guidance, and a failure to use the industry-developed standards governing the delivery of ABA services as a guide for auditors when reviewing medical documentation for services.
The Risk: The lack of Guidance for Illinois
While ABA treatment is one of Medicaid’s fastest-growing services nationwide, we need to remember it is a relatively new insurance-covered service, with many Illinoisans with autism, now with many well into their teens or early adulthood, never had access to behavioral treatments for their autism at a younger age. The coverage is just catching up to the real demand for these services. Illinois currently lacks a formal handbook to support provider compliance, which is driving low engagement, mixed information, and an inadequate provider network for families to access.
“In states where federal auditors stated there was a lack of clear, state-approved provider guidance, we see compliance confusion, which could possibly create improper payments,” Marla Root, the founder of the Coalition and parent of an autistic adult, stated. “Illinois is currently operating in a vacuum where providers are forced to navigate administrative rules without a more general, specific guidance, such as a provider handbook. This also leaves each managed care organization to struggle in managing compliance as well.” Advocates point to this lack of guidance as the exact environment in which “fly-by-night” operators could potentially thrive.
Without the required use of industry-agreed-upon standards of care, known as The Practice Guidelines by the Council of Autism Service Providers, federal and state auditors often struggle to distinguish legitimate clinical documentation from improper billing practices, as seen in other states.
Illinois’ ABA Providers Take Action to Ensure Higher Standards and Reduce Fraud
In a move that distinguishes Illinois from the featured national headlines, local ABA providers are actively lobbying for more, not less, guidance. The Coalition and others have requested a Medicaid provider handbook specifically for the delivery of ABA services for children and teens with Autism Spectrum Disorder and other related conditions.
“Illinois providers want high standards,” Root stated. “We are not waiting for a scandal to take action.”
To stay ahead of federal scrutiny, in early 2026, Illinois ABA providers participated in a series of intensive compliance and audit training sessions, along with workshops on proper medical-necessity documentation, developed by the Illinois Autism Insurance Coalition and subject-matter experts. These training courses were well attended and are designed to ensure that every hour of treatment services billed is backed by the generally accepted standards of care (The Practice Guidelines) – a benchmark that federal auditors say was missing in the states currently under investigation. Compliance oversight and quality medical documentation of services are discussed at every Coalition meeting, and a repeat of the training is scheduled for this fall.
The Coalition presented to the Medicaid fraud unit at the Illinois Office of the Inspector General office, focusing on how ABA delivery is structured and documented, and what constitutes treatment, and what does not. The Coalition greatly appreciated the opportunity to connect and share.
Protecting a Lifeline
The concern among local families and ethical providers is that the national scandals could lead to a “knee-jerk” reaction in which legitimate services are slashed to cut costs.
In Arizona, hundreds of children recently lost access to care when Medicaid plans abruptly canceled contracts amid fraud concerns, resulting in a lawsuit from families. Illinois advocates argue that the only way to prevent a similar collapse here is to standardize the field now by establishing clear, enforceable rules for delivering this service within a medical model framework.
“The current national scrutiny was probably inevitable and, in many ways, necessary. As children have finally gained access to autism therapies through insurance coverage, the field has experienced rapid growth. Like any healthcare field experiencing rapid growth, there must be clear oversight, accountability, and guardrails to protect both taxpayer dollars and the families relying on these services. The goal should not be to limit access to quality ABA services that genuinely help children like my son, but rather to strengthen standards in a way that supports ethical providers, protects families, and prevents misuse of the system so high-quality care can continue to thrive long-term.”Denise Bergh, the Chief Operating Officer for Behavioral Perspective Inc., is a long-time service provider in Illinois.
Root adds, “The message from the autism community is clear: High standards and clear guidance are the best defense against fraud, waste, and abuse.”
ABA coverage became more accessible to individuals with autism through Medicaid after Illinois’s state plan amendment was approved in March 2022. This helps us see the reason for a significant and recent uptick in Medicaid coverage cost for ABA, which is true, but explainable since children and teens with autism just recently received access to coverage.
HFS, the state’s Medicaid administrator, is currently addressing challenges providers face in delivering ABA services and is developing a provider handbook, though it has yet to be published. We appreciate HFS’s willingness to support providers and to meet with the Coalition and advocates on a monthly basis, and look forward to its publication soon..
The Coalition welcomes an opportunity to meet with stakeholders to improve Illinois’ delivery system for this medically necessary care. Please reach out by email at Help@ILASD.com or by phone at 614-565-5765.