Improving Care and Service Delivery for Autistic Youths Transitioning to Adulthood

Abstract

Approximately 100 000 autistic youths turn 18 each year, a rough approximation for the number entering adulthood. Population outcomes among autistic young adults are poor across indicators of physical health, mental health, employment, postsecondary education, community participation, independence, financial security, and access to needed community services. There is little evidence that we have moved the needle on these population-level outcomes over the past 15 years, despite growing attention to the needs of this group and an outpouring of investment in the development of patient-level clinical interventions. The focus on developing evidence-based treatments has not yet been matched by a corresponding investment in implementing interventions at a scale that can reach this growing population or in systems-level strategies for improving policy and program performance.1Historically, autism was conceptualized as a pervasive developmental disorder because difficulties typically manifest pervasively across domains of physical and behavioral health, motor and speech development, and social and emotional development. Thus, delivery of physical health care and health care transition in this population are almost always inextricably intertwined with other developmental domains and a need for communication and coordination with the patient, his or her family, and a myriad of other health and community service providers.2Recommendations for improving care coordination are commonplace in this field and targets for research and practice. However, few specific measures of care coordination exist beyond general questions asked of parents in health care surveys. Implementing continuous improvement practices is impossible without clear metrics to measure progress. A promising direction for measuring care coordination in a way that could inform iterative improvement cycles is the adaptation of social network measures.3 This is a priority of the Autism Intervention Research Network on Physical Health (AIR-P) research node at Drexel University.Medicaid plays a key role in the coordination of care and delivery of services. Poor employment prospects among autistic youth result in Medicaid being among the only potential insurers for this group. Hallmark Medicaid programs, including Section 1115 waivers and other programs that vary by state, can deliver a robust service array to eligible autistic youth. However, a thorough, population-level understanding of the pathways needed to navigate Medicaid during the transition of these youths to adulthood has not been established. There may be specific and modifiable aspects of Medicaid eligibility criteria that differentially affect access for aging autistic youth. The identification of Medicaid services used by enrolled autistic young adults will be a substantial advancement for AIR-P and may reveal avenues to boost the efficiency and effectiveness of service delivery.Across insurers, new service models for transition-aged youth with mental health and chronic health conditions, including peer support and service navigation, are being pilot tested. The adaptation of these innovative models to help autistic youth will be a key goal for AIR-P. Furthermore, among the most critical advancements needed to improve care delivered to autistic youth is reworking the connections between research and practice so that they are both more bidirectional (research informs practice and vice versa) and more efficient (innovation to scalable implementation cycles are faster). Robust networks that foster close connections among researchers, practitioners, and policymakers from the outset of innovation are poised to make much-needed headway for developing and implementing this burgeoning evidence base in a timely manner to truly move the needle on population-level outcomes.