Skip navigation

Calls to Action

Medicaid & Autism: 8 Things You Should Know

Earlier this year, the federal government directed the states to cover all medically necessary treatment for autism through their Medicaid programs. Why is this important? What does it mean in your state? Dan Unumb, executive director of the Autism Speaks Legal Resource Center, and Angela Lello, our director of Housing and Community Living, answer questions we have been hearing from you about why this is an important development.

1)    What has changed recently regarding Medicaid coverage for autism that has caused so many questions and concerns from the autism community?

The federal Centers for Medicaid & Medicare Services (CMS) in July advised the states that they must cover all medically necessary care for children with autism through age 21. The obligation is part of the Early and Periodic Screening, Diagnostic and Treatment (EPSDT) benefit.

2)   So what is specifically covered for autism now under Medicaid? 

Congress specifies which benefits are mandatory under Medicaid, but the federal government does not mandate specific treatments. For instance, Medicaid covers childhood cancer, but there is no “mandate” to provide chemotherapy to treat it. Instead, the states are directed to provide all medically necessary care for specific conditions.

Because it is up to each state to define “medical necessity,” Autism Speaks will closely monitor whether any state ignores the scientific evidence and determines applied behavior analysis (ABA) is never medically necessary for autism. In addition, a child’s treating physician must determine that ABA is medically necessary.

In those cases when ABA is determined to be medically necessary, it must now be a covered EPSDT benefit under Medicaid.

3)  This directive from the federal government was issued in July. But many families say they still can’t get benefits through Medicaid. Why the delay?

The states are being provided time to incorporate the new federal guidance into their Medicaid plans. CMS said that states may need time to review their current programs to determine if any regulatory or policy changes are needed, and also to seek out public input, but stressed this must be done “expeditiously.”

While CMS did not establish a specific compliance date, it did make clear that the states are now obligated to deliver medically necessary care and should not “delay or deny” the provision of services.

4)   Officials in my state say covering autism benefits will add tens of millions of dollars to their Medicaid budgets. Is this true?

State estimates regarding the cost of providing autism benefits through insurance have historically been wildly inflated. For example, when South Carolina was considering legislation to require private insurers to cover autism, state officials estimated it would cost $10.6 million a year. Once the law was passed, the actual cost came in at $2 million per year, less than one-fifth of what the state had predicted. Similarly, a projection developed by Arizona overestimated the actual cost by 1,200 percent.

5)   If Medicaid is a federal program, why aren’t the states just ordered to comply?

Medicaid is a joint federal/state health care program for lower-income children, individuals with disabilities regardless of age, and other groups. The federal government and the states share the cost and responsibilities of running Medicaid. The states typically have broad leeway in how they manage their Medicaid programs, but must provide certain mandatory benefits in ordered to receive federal matching funds. EPSDT is a mandatory benefit.

6)   Why is Medicaid coverage considered such an important issue if only certain groups are covered?

Medicaid is the primary source of health insurance coverage for one-third of all American children with autism; including secondary insurance coverage, one-half receive Medicaid benefits.

7)  If my child has Medicaid and has been denied ABA, even after being recommended by a doctor, what can I do?

Your child has the right to any and all medically necessary treatment regardless of whether or not your state has added ABA to its Medicaid program. Under federal law, Medicaid beneficiaries have the right to appeal any benefit denials. If you feel like your child has been denied medically necessary benefits under Medicaid, you have the right to file an appeal with your Medicaid health plan and your state Medicaid agency. To find out how to file an appeal of Medicaid benefits denial, contact your Medicaid health plan or state Medicaid agency.

8)  My state says that ABA is covered, but my Medicaid health plan keeps denying my providers’ claims saying they’re not covered, or because they don’t have any contracted providers, or for some other excuse.

Almost half of all Medicaid-covered children are enrolled in managed care, which means their state has contracted with a private insurance company or HMO to manage their program. When this happens, the insurance company acts on behalf of the state to make benefit determinations. However, the same rights to appeal still apply.  

The Autism Speaks blog features opinions from people throughout the autism community. Each blog represents the point of view of the author and does not necessarily reflect Autism Speaks' beliefs or point of view.