Medicaid programs nationwide are supposed to offer a basic menu of services to children with developmental disabilities, but some states have been skirting these responsibilities. Now, federal officials are amping up pressure to comply.

The Centers for Medicare & Medicaid Services recently issued new guidance detailing what are known as Early and Periodic Screening, Diagnostic and Treatment, or EPSDT, requirements. The mandate is designed to ensure that children participating in Medicaid and the Children’s Health Insurance Program have access to a broad array of prevention, diagnostic and treatment services.

For kids with developmental disabilities, that can mean having access to everything from well-child visits and dental care to mental and behavioral health services, medical specialists and much more.

The 57-page letter to state health officials outlines strategies and best practices for meeting the EPSDT standard.

“The implementation of the EPSDT requirements, in partnership with states, is vital to the tens of millions of children in the nation who are covered by Medicaid and CHIP. We’ll keep working until every child can get the care they need, when they need it,” said CMS Administrator Chiquita Brooks-LaSure.

In particular, the guidance notes that EPSDT requires states and managed care plans to maintain an adequate number of providers including pediatric specialists and children’s hospitals. They also must have clear procedures to allow children access to out-of-network or out-of-state providers as needed so that children with disabilities or other complex health needs can have prompt access to medically necessary services.

“For children whose medical needs cannot be met by in-state providers and for whom the state has identified an out-of-state provider to deliver medically necessary services, states should screen and enroll out-of-state providers within an abbreviated timeframe to help ensure that children can access care in a timely fashion,” the letter states.

In 2022, Congress directed CMS to issue guidance about the expectations under EPSDT as part of the Bipartisan Safer Communities Act. Disability advocates called the move much needed.

Kim Musheno, vice president of public policy at the Autism Society of America, said that there’s growing concern that “the EPSDT benefit is not being uniformly followed across managed care plans and states.” Often, she said, families and health care providers don’t know that they are entitled to various services.

“These requirements include access to services in the least restrictive setting, mandatory assessment of physical, developmental and mental health, and paying for out-of-state services if not readily available,” said Musheno who noted that cultural and linguistic barriers as well as bureaucratic hurdles like paperwork and lengthy approval processes also pose issues.

For years, Autism Speaks worked to ensure that states complied with a requirement that they cover treatments like applied behavior analysis for children with autism under EPSDT following a 2014 CMS bulletin telling state Medicaid programs that they must offer “medically necessary diagnostic and treatment services” to kids who are on the spectrum.

Nonetheless, the advocacy group now says that many families continue to struggle to secure access to behavioral approaches other than ABA therapy like Floortime or TEACCH.

“There isn’t a single federal bill or action that will fully address all of the challenges experienced by autistic children and their families in accessing care. However, we believe this guidance will strengthen EPSDT requirements and compliance and help enhance access to quality care and services for many children with autism across the country,” said David Sitcovsky, vice president of advocacy at Autism Speaks.

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