Recently, I had the opportunity to visit Bridgeport, West Virginia and join the experts behind the Mountaineer Autism Project for their 2018 conference. The conference brought together families of children with Autism Spectrum Disorders (ASD) and the providers who serve them. I helped kick things off by outlining the Medicaid benefits for children with ASD, and I thought I’d some of the same resources with readers of SayAhhh!.

Medicaid’s pediatric benefit, known as Early and Periodic Screening, Diagnostic and Treatment (EPSDT), offers all children in Medicaid the services they need to grow and thrive. EPSDT is especially important for children and youth with special health care needs, including children and youth with ASD, because the benefit must be tailored to each individual child. Under EPSDT, states must provide all coverable and medically necessary services. By “coverable,” the law means all the benefits that it is possible for Medicaid to pay for (see list in the Social Security Act §1905(a)), even if the state typically does not cover the benefit. And by “medically necessary,” the law means any service needed to correct or ameliorate physical and behavioral health conditions for a particular child. That is, the benefit must be covered if the child’s provider can show that it would help the child get better or prevent the child from getting worse. These determinations must be made on a case-by-case basis.

Thanks to guidance from CMS in 2014, it is clear that under federal law, virtually all of the services a child with ASD needs should be covered by EPSDT. Prior to the 2014 guidance, states sought waivers to cover certain services or treatment modalities, but the guidance made it clear that waivers are not necessary because federal law already requires such coverage. For example, EPSDT covers: licensed practitioners’ services; speech, occupational, and physical therapies; physician services; private duty nursing; personal care services; home health; medical equipment and supplies; rehabilitative services; and vision, hearing, and dental services.

EPSDT is not without its limits however. The major limitation to EPSDT is age – it is only available to children under age 21 in Medicaid, and at state option, under age 19 in CHIP. And some services that may help a child with ASD would require a §1915(c) waiver, such as respite care and environmental or vehicle modifications. Applied Behavioral Analysis (ABA) and other recognized and emerging treatment modalities for children with ASD do not require a waiver.

However, we still hear about the challenges families and providers face when trying to help children with ASD access the services they need. Sometimes families and providers are told that certain treatment modalities are not covered (like ABA) or that certain services are limited (like only 20 visits per year of physical, occupational, or speech therapy). In these cases, families and providers may need to contact their state’s Medicaid’s office and/or their Medicaid managed care plan to find out why medically necessary services are being denied. A simple letter from the provider to the managed care plan may do the trick, but sometimes a more concerted effort will be needed to overcome the bureaucratic hurdles. In those cases, look for a child health, disability rights, or legal aid advocacy organization nearby.