With a prevalence of 1 in every 59 children, autism spectrum disorder (ASD) has become increasingly commonplace. In turn, the growing autism advocacy community has been extraordinarily effective in engendering the political will to enact laws intended to ensure that individuals with ASD have access to needed therapies such as applied behavior analysis (ABA), empirically proven to be the most effective method for treating the developmental delays and challenging behaviors most commonly associated with ASD. Left untreated, the cost of autism per capita is estimated at $3.2 million.
Although ABA was first shown to be effective in the late 1980s, private insurance coverage routinely excluded ABA on the basis that it was educational or investigational. This prompted the autism community to pass autism insurance reform bills state-by-state to mandate coverage of ABA. This past summer, North Dakota became the 48th state to announce a plan to mandate insurance coverage of ABA, leaving Tennessee and Wyoming as the only remaining states to allow state-regulated plans not to cover medically-necessary treatment for children with ASD.
Despite the enormous success of advocates in securing insurance coverage of ABA, nearly all of the state autism mandates do not apply to Medicaid. Four years ago, though, the Centers for Medicare & Medicaid Services (CMS) published an informational bulletin clarifying that treatment for ASD is a covered service under the Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) benefit, Medicaid’s pediatric benefit for children and adolescents. In the intervening years since the bulletin was issued, more than half of state Medicaid agencies have added coverage of ABA under EPSDT.
Given the high prevalence of ASD and the fact that Medicaid and CHIP cover over a third of children in the US, the CMS clarification and subsequent compliance of a majority of the states created critical, long-overdue access to ASD treatment. Approximately 20 states, however – including populous states such as Texas and New York – exclude ASD treatment, specifically ABA, for children in Medicaid.
Even in states that now cover ABA for Medicaid beneficiaries, significant barriers deprive these children of the treatment they need. In most instances, such barriers violate both the EPSDT mandate and the federal Mental Health Parity and Addiction Equity Act (MHPAEA). Simply stated, MHPAEA provides that limits on mental health services, including autism treatment, can be no more restrictive than limits on substantially all other medical/surgical services. Most states have contracted with managed care organizations (MCOs) to administer their autism treatment benefits, and CMS has made it clear that MCOs must comply with MHPAEA. MHPAEA has been a critical complement to the state autism insurance reform laws that mandate coverage in 48 states, and it is playing an equally important role as states design their autism benefits for children with Medicaid coverage.
Despite clear guidance from CMS to ensure access to autism treatment for children with Medicaid coverage and separate guidance that such treatment is protected by MHPAEA, thousands of children with ASD continue to struggle to access the services and supports they need. By allowing barriers to medically-necessary treatment to persist, states fail to maximize the potential of these children to become adults who live and work independently. Because of the high prevalence of ASD, it is not hyperbolic to suggest that thousands of children in our country are in danger of being left behind.
By Julie Kornack, Center for Autism and Related Disorders