As part of a letter addressing the California Department of Managed Health Care, Autistic Self Advocacy Network president Ari Ne’eman offered the following comments on behalf of ASAN regarding California’s proposed changes to regulations that address insurance coverage of autism-related services:
I write on behalf of the Autistic Self Advocacy Network (ASAN). ASAN is a national community advocacy organization run by and for Autistic people. ASAN’s supporters include Autistic adults and youth, cross-disability advocates, and non-autistic family members, professionals, educators and friends. ASAN was created to provide support and services to individuals on the autism spectrum while working to educate communities and to improve public perceptions of autism. Our activities include public policy advocacy, community engagement to encourage inclusion and respect for neurodiversity, quality of life oriented research, and the development of Autistic cultural activities. We provide information about autism to the public through a number of different educational outreach and systems change related projects.
We write to communicate feedback regarding the Department’s recently drafted regulations on insurance coverage for Pervasive Developmental Disorder and Autism, pursuant to SB 946. Our feedback is regarding two areas of the regulation – first, the choice to provide coverage only for Applied Behavioral Analysis (ABA), and second, the need to ensure that providers competent to diagnose and provide services to adults on the autism spectrum are included within the definition and reporting requirements for plan provider network adequacy.
Autistic children have diverse needs and no one therapy helps them all, but therapies that are developmental or that combine developmental and behavioral methods can be quite helpful, especially considering the attention and sensorimotor problems characteristic of most autistic children. These therapies focus more on the relationship between parents or clinicians and the child, helping adults become more sensitive to (understanding of, able to recognize) – and thus responsive to –their child’s cues and needs. By training parents to follow the child’s lead, these therapies promote parent-child synchrony, or mutual/shared attention, that in turn enhances the child’s language development and social (such as play) engagement.
Many of these more developmental therapies have proven at least as effective for autistic children as therapies grounded in applied behavioral analysis. Many plans cover both ABA and the Early Start Denver Model, which merges developmental and ABA components. Yet, as one example, the Joint Attention, Symbolic Play, Emotion Regulation (JASPER) therapy is more developmental and its evidence rivals any other method. Several studies show significant improvements in important areas like functional language, maintained over time, used for both toddlers and preschool age, and across the autism spectrum (including children with minimal expressive language). These studies use a randomized, controlled trial design, the gold standard of scientific treatment research. Conversely, most behavioral studies are of poor or low quality and show moderate or lower effects. As such, we urge the regulation to specifically provide for plan coverage of a broad scope of evidence-based behavioral health interventions, not limited to Applied Behavioral Analysis.
Additionally, we note that while the regulation makes clear a variety of requirements for provider network adequacy, no mention of the particular needs of adults on the autism spectrum are mentioned. Adults face significant and unique challenges in accessing diagnosis, medical treatment and service-provision and often require providers specifically competent not only in autism but in its manifestations across the lifespan. We strongly urge the Department to acknowledge that by incorporating the availability of providers competent to diagnose, treat and provide services to adults on the autism spectrum within the reporting requirements for health plans and the definition of provider network adequacy plans must provide.
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