Systems of care among children and youth with special health care needs with and without adverse childhood events: National Survey of Children's Health 2016-2017.

Abstract Background Knowledge of adverse childhood events (ACEs), the associated access to healthcare and unmet needs among children and youth with special health care needs (CYSHCN) is limited. Objectives Our objectives were to compare the likelihood of CYSHCN versus non-CYSHCN experiencing one or more ACEs and document differences in receipt of recommended and needed health care among CYSHCN with and without ACEs. Methods We combined two years of data from the 2016 and 2017 National Survey of Children's Health (N = 71,181), providing a sample of 16,304 CYSHCN. Our primary outcome measures included eight adverse childhood events, compared to singular and aggregated ACEs among non-CYSHCN. We calculated associations between ACEs and secondary outcome measures for six components of well-functioning systems of care and unmet need for different types of health care using bivariate and multivariate analyses. Results CYSHCN were more likely to have each of the ACEs measured and were likelier to experience aggregated levels of ACEs compared to non-CYSHCN. The likelihood of CYSHCN having a medical home with family-centered and coordinated care decreased with increased ACEs, while one or more ACES increased the likelihood of having unmet needs for mental health care. Conclusion The findings of the current study extend our understanding of the additional adverse event burden associated with special health care needs status, the accompanying limitations in access to family-centered and coordinated care in a medical home and unmet need for mental health care, indicating that much work remains in establishing appropriate care systems for this very vulnerable population.