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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.

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This fact sheet presents the results of a survey related to the time it takes families to travel to and from new subspecialist appointments and whether that impacts their preferences for in-person or telehealth visits.

Findings from a survey of California-based caregivers that asked them about their experiences receiving peer support for caring for children and youth with special health care needs.