June 19, 2021

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5 Tips for Navigating Health Insurance Coverage for Autism Services

3 min read

You didn’t sign up for your child to have an autism diagnosis, but you learn to work with the news of a diagnosis and establish a “new normal” for your entire family. Autism insurance is an entirely different beast. Autism insurance coverage can make or break your financial situation.



a woman talking on a cell phone: Upset woman looking at cell phone.


© The Mighty
Upset woman looking at cell phone.

The breadth of insurance plans in the United States is staggering – which makes it nearly impossible to offer plan-specific support here. It is not enough to say you have “Blue Shield” or “Aetna” – each plan offers a slightly different menu of services that are covered and it is important to compare apples to apples, so to speak. But what follows are some of the keys we have found to navigating autism insurance. I do not contend to be an expert – but I do have years of (hard-fought!) experience. For more resources, connect with the fabulous folks at the Mental Health and Autism Insurance Project.

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1. Be persistent.

Whether seeking authorization for a new prescription or increasing hours with a certain provider, your issue is unlikely to be addressed in just one call. You can use digital reminders to alert you to follow up as needed. Be as specific as you can in those reminders – note any reference numbers, names of people you spoke with, and/or expected outcomes.

2. Read the fine print.

When you get an Explanation of Benefits (EOB) where a payment is not made (or not made in full), there will often be “footnotes” – numbered comments that attempt to explain why the claim didn’t go through. When you contact your providers or insurance company, you can start with that information. Was a code missing? Was a date mistyped and thus double-billed? Or was a form not filed so that a therapy is now suddenly considered to be “out of the scope” of a provider’s work?

3. Document, document, document.

When at all possible, communicate with insurance companies via email, so you have a written record of what transpired. Unfortunately, none of the three companies we have worked with since Mr. D’s diagnosis are super-accessible via email, so phone calls are required. I tend to open Google document files and keep a running list of what has happened and when. It has been helpful down the road – and you never know when you start if problem-solving will take a week or a year.

4. Appeal or challenge through appropriate channels.

In most cases, you must first appeal or challenge a claim’s payment through the insurance company itself. Be sure to document these steps, as if/when you need to appeal to outside organizations, they will want to know the steps you have already taken. In California, many (but not all) insurance companies are regulated by the Department of Managed Health Care (DMHC). Others are overseen by the California Department of Insurance (CDI). You will need to check to see which entities oversee your insurance company, depending on your state of residence.

5. Commiserate with others.

Insurance battles can be long and draining. Combat the frustration and exhaustion by seeking solace with those who understand – your fellow parents of kids with disabilities. Online resources, such as the Mental Health and Autism Insurance Project can be a helpful resource, as can in-person groups where you can trade war stories.

In some cases, regional list-serves or similar online communities can help you access similar families who, importantly, have the same insurance plan as you do. When you manage to get that reimbursement corrected, or to get an out-of-network provider approved – it’s time to celebrate! Set that money aside to start planning your next family vacation.

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