Across the United States, families seeking autism services are facing a growing and deeply frustrating reality: long waitlists for care. Demand for applied behavior analysis (ABA) therapy has increased dramatically in recent years as autism diagnoses rise and awareness of early intervention grows.
Yet the supply of providers has struggled to keep pace.
These delays are not isolated to one state or one market – they are occurring nationwide. Policymakers, payers and providers are all grappling with how to expand access to autism services while maintaining quality and workforce stability.
While the problem is national, solutions often begin locally. In my view, Missouri provides a useful case study for how states can begin addressing treatment delays in practical ways that prioritize families and children.
In Missouri, children diagnosed with autism spectrum disorder (ASD) are eligible to receive behavioral health services, including those based on the principles of ABA therapy. While approaches to early intervention for ASD may vary, ABA therapy is the most common treatment due to abundant evidence of efficacy.
Consequently, research shows that when demand for ABA services is high, families are unlikely to find available space with an ABA provider. Instead, they are likely placed on a waitlist, frequently for a very long time.
Recently, I had the opportunity to speak with several families affected by autism at a community-based event in Saint Louis. Each family shared their experiences with being on multiple waiting lists for ABA services. In some cases, families cited being on waiting lists for almost eight months.
Unfortunately, I have heard these stories so many times from individuals and families across the community. These stories are not a coincidence – they reflect a broken system.
Several research studies also highlight that waiting lists for ABA therapy are currently long and widespread. For example, approximately 75% of caregivers (parents or guardians) reported spending time on a waitlist for ABA services, with the average waiting time for these services at nearly six months.
These findings are significant because caregivers also reported a worsening or stagnation in their child’s problem behavior, the longer they spent on a waitlist. For instance, families on a waitlist for four months or more were twice as likely to report that behavioral concerns worsened compared to those on a waitlist for three months or fewer. These findings underscore the criticality of early intervention without delay.
A few weeks can affect a child’s future growth. Furthermore, a survey of 540 caregivers revealed that long waitlists were the most common reason (33.7%) for children not receiving ABA services.
The earlier, the better
Early intervention takes advantage of the time limited opportunity to close gaps in development and perhaps catch up with peers. This is because the brains of younger children are thought to be more malleable, a term called “brain plasticity.” Research shows that early intervention in ABA can significantly improve long-term developmental outcomes, cognitive abilities and social skills for children with autism. By leveraging high brain plasticity in early childhood, ABA enhances communication, reduces challenging behaviors, and promotes independence.
While I recognize that the barriers to accessing ABA services are multifaceted, it is essential to initiate discussions with Missouri policymakers rather than waiting for a national blueprint to address the issue.
I will be raising the concern of ABA waitlists in Missouri for Medicaid beneficiaries and proposing a solution by formally submitting written testimony to the MO HealthNet Oversight Committee. Established in 2007 by Senate Bill 577, the Committee’s purpose is to evaluate Missouri’s Medicaid program (MO HealthNet), focusing on participant/provider satisfaction, health outcomes and budget forecasts.
The next Committee hearing takes place on May 13. And for some context, In Missouri, according to the latest available data, 1 in 41 (or 2.5%) children are diagnosed with ASD. Of course, it’s important to recognize that autism manifests differently in each child, leading to varying levels of support needed for families.
Understanding these differences is crucial in providing the appropriate resources and assistance for those affected.
A proposed solution
From a policy perspective, I am proposing the introduction of a system, state statute or regulation in Missouri that directs ABA providers to proactively inform families and/or caregivers about alternative providers with shorter or no waitlists.
This requirement would help the children, the families and, in fact, the ABA industry, potentially increasing the availability of services. This approach is designed to bridge the gap between initial ASD diagnosis and receiving necessary care, which is particularly critical for services with long waiting periods.
This level of transparency can significantly enhance access to timely services, ultimately leading to better outcomes for children and families who rely on ABA therapy.
How does it work? Well, here’s what I’m thinking.
ABA providers would implement standardized patient notification requirements concerning waitlist status. Specifically, providers would be required to send families and/or caregivers written notice within 15 business days if they encounter capacity challenges that hinder the enrollment of new clients in ABA therapy.
This communication will also include a list of one to two alternative providers for families to consider.
Such an approach could have several impacts, in my view.
As stated, early intervention is critical for development, ensuring a child receives care sooner, even with another provider, aligns with ethical guidelines to prioritize client well-being. A few weeks can make an enormous difference in a child’s development.
Additionally, openly informing families and/or caregivers about waitlist capacity and providing referrals to competitors shows integrity and a commitment to helping, rather than just retaining, the client. This kind of communication and transparency is critical at a time when ABA has found itself in headlines for negative reasons.
What’s more, I see this as a way to reduce family stress. The long wait times for ABA services are a major source of anxiety for families. Providing alternatives is part of supporting overall family well-being, which – by the way – is linked to developmental progress.
Similar practices are already common in other health care sectors and can serve as a model for improving accessibility in ABA therapy.
For example, under Medicare hospital Conditions of Participation (CoPs), hospitals must help patients choose a post-acute provider – a skilled nursing facility (SNF), rehab hospital, home health agency, etc. Hospitals must provide a list of available providers serving the patient’s area, often including quality data, so patients can choose where to receive care after discharge
The ABA industry prides itself on adhering to the highest ethical and professional standards as underpinned by the Behavior Analyst Certification Board Ethics Code for Behavior Analysts.
I believe this proposed solution to the ABA waitlist problem will resonate with compassionate and ethical ABA providers, key stakeholders such as the Council of Autism Service Providers (CASP) and, most importantly, families touched by autism and their child.
Missouri has an opportunity to lead by implementing a common-sense policy change designed to reduce delays between diagnosis and treatment.
The growing national demand for autism services makes one thing clear: We cannot afford to accept long waitlists as the status quo. Policymakers, providers and industry leaders should work together to ensure that a diagnosis leads to timely care – not months of waiting.
The time for ideas and proposed solutions is now.
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About the author: Michael Quinn is the CEO of Autism Support Now, one of the largest Medicaid-focused autism therapy providers in Missouri. Founded in 2016, the company has several clinics in the state, in addition to operations in Olathe, Kansas.