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

Disabil Health J. 2022 Apr;15(2):101226. doi: 10.1016/j.dhjo.2021.101226. Epub 2021 Oct 23.


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.

Keywords: ACEs; CYSHCN; Health care outcomes; Medical home; Systems of care.

MeSH terms

  • Adolescent
  • Child
  • Child Health
  • Child Health Services*
  • Delivery of Health Care
  • Disabled Persons*
  • Humans
  • Patient-Centered Care