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Friday, July 19, 2019

HCBS: The Need to Hear from Autistic Adults

The Politics of Autism includes an extensive discussion of insurance and  Medicaid services for people with intellectual and developmental disabilities.  Home and Community-Based Services (HCBS) are particularly important.

Lindsay Shea, Whitney Schott, Julia Bascom, Amy R. Pettit at Health Affairs:
The US spends more than $80 billion per year on Medicaid-funded home and community-based services (HCBS). This investment provides vital support to adults with disabilities, who typically do not have access to these resources through private insurance. Over the next several years, states will be mandated to implement new federal requirements that will, for the first time, establish a federal minimum standard for HCBS and modernize and shape delivery of these services for years to come. As part of this process, the Centers for Medicare and Medicaid Services (CMS) called for states to offer meaningful and repeated opportunities for stakeholders to provide input into their transition plan and processes. Autistic adults make up a growing portion of these stakeholders, as a result of an increase in autism spectrum disorder (ASD) diagnoses and an aging population of autistic people diagnosed in childhood who will need services through adolescence and adulthood. Autistic voices and perspectives will be critical to shape a service system that can effectively meet their needs, but it remains unclear whether states’ public comment periods and feedback processes have included effective mechanisms for this group to be heard.