A Blueprint for Change: Guiding Principles for a System of Services for Children and Youth With Special Health Care Needs and Their Families.

Children and youth with special health care needs (CYSHCN) and their families continue to face challenges in accessing health care and other services in an integrated, family-centered, evidence-informed, culturally responsive system. More than 12 million, or almost 86%, of CYSHCN ages 1-17 years do not have access to a well-functioning system of services. Further, the inequities experienced by CYSHCN and their families, particularly those in under-resourced communities, highlight the critical need to address social determinants of health and our nation's approach to delivering health care.

Access to Services for Children and Youth With Special Health Care Needs and Their Families: Concepts and Considerations for an Integrated Systems Redesign.

Access to services for children and youth with special health care needs (CYSHCN) have typically emphasized coverage, service, timeliness, and capability. Yet families of CYSHCN continue to describe a fragmented health care system with significant unmet needs. For many years, the concept of access to services has focused on the services themselves, rather than starting with the needs of CYSHCN and their families.

Health Care Utilization and Unmet Need Among Youth With Special Health Care Needs.

Purpose: To examine unmet health needs and health care utilization among youth with special health care needs (YSHCN).

Methods: We analyzed data among youth aged 12-17 years using the 2016 National Survey of Children's Health. We conducted descriptive analyses comparing YSHCN with non-YSHCN, and bivariate and multivariable analyses examining associations between dependent and independent measures.