In The Politics of Autism, I discuss evaluation, diagnosis, and the uncertainty of prevalence estimates.
Abstract
Little is known about how policy—laws, regulations, procedures, administrative actions, incentives, or voluntary practices of governments or other institutions—shapes access to early autism services including diagnosis before age three. Early diagnosis and treatment are considered critical to improve outcomes. Understanding how policy influences such services could have substantial impact on outcomes for autistic children. We conducted a narrative literature review to determine what is known on how policy impacts early autism diagnosis and treatment. We found 17 articles that describe policy factors promoting early diagnosis and seven articles that identify policy factors affecting variability in autism services. We identified the following themes: (1) state policy factors influence access to diagnosis and other autism services, (2) innovative screening models affect early diagnosis, (3) provider training programs increase autism screening and diagnosis, (4) insurance policy influences autism services variability, and (5) resource availability affects geographic variability in autism services. Although common themes exist, more robust investigation is needed on policy impacting early autism services—beyond insurance and early intervention—and utilizing more rigorous designs.
From the article:
The five articles included in this theme were either about state autism insurance mandates (Baller et al., 2016; Callaghan & Sylvester, 2019; Douglas et al., 2017; Mandell et al., 2016) or state Medicaid HCBS waivers focused on children with autism (Velott et al., 2016). Since 2001, states began to require through law that private insurance plans provide coverage for autism services such as ABA therapy (Callaghan & Sylvester, 2019). As of 2017, 46 states and the District of Columbia have implemented at least one such autism insurance mandate (Callaghan & Sylvester, 2019). Similarly, state Medicaid HCBS waivers that cover non-institutional autism services for children with a diagnosis have been in existence since 1981 and have been increasingly enacted by states (Velott et al., 2016). The content (e.g., autism insurance mandates requiring insurance plans to offer autism coverage versus cover autism services, Medicaid HCBS waivers with different enrollment and cost limits) and the implementation of these laws varies widely across states due to several factors such as whether the state has an extensive offering of autism-related services in place and if additional credentialing is required by private insurance plans (Baller et al., 2016; Douglas et al., 2017; Velott et al., 2016). Furthermore, other state contextual factors such as Democratic control, more liberal citizen ideology, percent of uninsured individuals, and percent of employer sponsored insured individuals may affect whether the state has an autism insurance mandate (Callaghan & Sylvester, 2019). Callaghan and Sylvester (2019) found that states had the highest level of Democratic control when members of the Democratic Party controlled the governor’s office and held the majority in each chamber of the state’s legislature. Increased Democratic control was found to be associated with both an increased likelihood to pass autism insurance mandates and increased generosity of the autism insurance mandates. Regardless, states with an autism insurance mandate have a higher treated prevalence of autism among children with private insurance, suggesting that state autism insurance mandates improve service access overall (Mandell et al., 2016).
