Skip to content

Children and youth with special health care needs (CYSHCN) are high utilizers of health care resources and their unique needs merit targeted consideration. The focus of payment reform efforts to date has been on adults with chronic illnesses, with less priority given to investment in children’s health and the life course. Spending for children’s health is an investment in their growth and development with long-term outcomes at stake. This paper discusses high-priority research topics in the area of health care financing for CYSHCN including what is currently known and important knowledge gaps. The authors highlight three primary areas of investigation: benefits, payment models, and quality measurement. Specific aims and hypotheses are offered, as well as suggestions for research approaches and thoughts on potential implications.

This article is part of a supplement to Academic Pediatrics that outlines a national health systems research agenda for CYSHCN. Learn more about the supplement and access all the articles.

Related Grants

This policy brief by the National Alliance to Advance Adolescent Health looks at what happens when low-income youth and young adults with chronic conditions and disabilities age out of the Title V Program for Children and Youth with Special Health Care Needs and provides policy recommendations.

This policy brief by the National Alliance to Advance Adolescent Health investigates the changes that result when low-income youth and young adults with disabilities lose their childhood eligibility status under SSI following the age 18 redetermination process and provides policy recommendations.