Autism Complexity and Parental Wellbeing: The Role of Care Coordination in Promoting Health Equity

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Project Summary The overall goal of this proposal is to determine the influence of autism spectrum disorder (ASD) care coordination services on parent health and stress according to geographic and sociodemographic factors. Specifically, the aims of this study are to establish an assessment of ASD severity that reflects co-occurring conditions, determine the impact of care coordination on the association between child ASD and parent outcomes, and delineate variation in the impact of care coordination on parent outcomes by sociodemographic influences, (i.e., race/ethnicity, rural/urban areas, Health Professional Shortage Areas). To achieve the aims of this proposal, we will merge the 2016-2019 National Survey of Children’s Health (NSCH) to create the largest, nationally representative dataset that includes child, parent, and healthcare-related variables. The combined sample includes 3,313 parents of children with a current ASD diagnosis. The Health Resources and Services Administration (HRSA) designations of primary care and mental health HPSAs will be analyzed to evaluate the interrelation of multi-level ASD influences from a health equity framework. A moderated- mediation model of ASD care coordination will be used to test for sociodemographic interaction effects (i.e., moderation) in the degree to which care coordination explains the association between ASD complexity and parent health and stress (i.e., mediation). Completion of these aims will provide a direct response to federal initiatives to standardize and evaluate child healthcare coordination. The Medicaid Services Investment and Accountability Act (MSIAA) of 2019 will allow states to offer optional benefits that include care coordination services for Medicaid-eligible children with medically complex conditions beginning in 2022. Qualifying conditions under the MSIAA includes only “severe autism”, which excludes children with mild or moderate autism that may have multiple other co-occurring conditions. Further, there is broad inter-state variability in the availability and requirements for care coordination offered in available health plans (Barth, 2019). The Department of Health and Human Services (2020) is currently attempting to evaluate best practices in care coordination among out-of-state providers for children with medically complex conditions, as not all states allow the service. Our findings will contribute to initiatives for community-informed ASD care coordination.