The Trendline | Navigating the Waitlist

Hi, friends!

Welcome to this week's edition of Trendline. Every article we share is chosen with one goal in mind: helping you spend less time searching for answers and more time focusing on what matters most, your child.

This week, we're covering what to do when you’re on the waitlist and what EPSDT benefits mean for families on Medicaid, as well as sharing resources for navigating disability services.

Thanks for being here. We're so glad you're part of the Trendline community.

— The Trendline Team

You made the calls. Filled out the paperwork. Sent the diagnostic report. Verified insurance.

And then you heard:

“We're adding you to our waitlist.”

For families who have already spent months navigating evaluations and referrals, learning that there may be another long wait can be incredibly frustrating.

While you may not be able to control how quickly a provider has an opening, there are steps you can take to better understand your options—and protect your child's access to care.

“There's a waitlist” doesn't tell you very much.

Ask the provider: Is the list first-come, first-served or based on clinical need? What's the approximate wait? Do different locations have different availability? Would accepting fewer hours initially create an earlier opening? Are morning or daytime appointments available sooner? Can your child be contacted for cancellations?

And don't stop with one provider.

If you're using insurance, ask the health plan for a list of in-network providers currently accepting new patients.

Then verify the information yourself.

This is one of the simplest—and potentially most useful—things you can do.

For every provider you contact, record the provider's name, phone number, date contacted, whether they're in-network, whether they're accepting new patients, estimated wait and what you were told.

Why?

Because if your insurer tells you there are plenty of in-network providers but every provider you call has a six-month waitlist, that documentation helps demonstrate the access problem you're actually experiencing.

ABA doesn't have to be the only support your child receives.

Depending on your child's individual needs, talk with their healthcare and educational teams about other appropriate services, including speech-language therapy, occupational therapy, communication supports, parent or caregiver training, school-based supports and community resources.

If your child attends public school and you believe they may require special education, you can also ask the school about an evaluation. You do not have to wait for outside ABA services to begin before addressing educational needs.

Families whose children are enrolled in Medicaid should know four important letters:

EPSDT.

The Early and Periodic Screening, Diagnostic and Treatment benefit provides comprehensive and preventive healthcare services for Medicaid-enrolled children under 21. CMS states that EPSDT is intended to ensure access to appropriate preventive, dental, mental-health and specialty services. (Medicaid)

Federal requirements also extend beyond simply screening children. States must make available appropriate and medically necessary Medicaid-coverable services needed to correct or ameliorate identified health conditions, subject to applicable federal requirements and state medical-necessity determinations. (Medicaid)

That doesn't mean every requested ABA service is automatically covered. Coverage, medical necessity, provider availability, authorization and appeal procedures still matter.

But EPSDT is an important protection for families to understand when navigating Medicaid services.

CMS also released a Children's Behavioral Health Services and EPSDT Requirements toolkit in February 2026 and a broader EPSDT coverage guide in May 2026. (Medicaid)

If someone says “no,” ask who actually made the decision.

Was it the ABA provider? The insurance company? A managed-care organization? Medicaid? Was it an availability issue—or an actual coverage denial?

If coverage was denied or reduced, ask for the decision in writing and request information about your appeal rights.

Those are very different situations—and they may have very different solutions.

Helpful resources worth bookmarking.

CMS Autism Services
Start here for federal information about Medicaid and autism services.
Explore Medicaid Autism Services

EPSDT Explained
CMS's family-relevant overview of Medicaid's benefit for children under 21.
Learn About EPSDT

2026 EPSDT Guides & Children's Behavioral Health Toolkit
A more detailed resource for families, advocates and providers who want to understand the federal requirements. (Medicaid)
Explore CMS's EPSDT Guidance and Toolkits

Find Your Parent Center
Federally supported Parent Training and Information Centers can help families navigate disability services and educational rights in their own state. (Parent Information Center)
Find Your State's Parent Center

Have a topic you’d like us to cover? The Trendline is here to make complicated systems a little easier to navigate. Send us the questions you’re running into—from insurance and Medicaid to IEPs—and we’ll continue breaking down the information families need.

Educational information only. Laws, Medicaid programs, waiver eligibility, insurance requirements and available services vary by state and individual circumstances. This newsletter is not legal or medical advice.