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Families of children with special health care needs often say they feel overwhelmed trying to manage their child’s care in today’s complex and fragmented system, and would welcome more and better care coordination services. At the same time, they know that ultimately the family has primary responsibility. This paradox calls for a revision in how care coordination services are defined and delivered. A new issue brief by Holly Henry, PhD, and Edward L. Schor, MD, both of the Lucile Packard Foundation for Children’s Health, outlines what services might look like if they were designed to support families’ role as the primary care coordinator.

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A new article in the Journal of Pediatric Health Care from the Institute for Patient- and Family-Centered Care and Cincinnati Children's Hospital Medical Center discusses best practices for supporting diverse membership in children's hospital patient and family advisory councils and advancing the involvement of patient and family advisors in hospital-wide diversity, equity, and inclusion projects and initiatives.

This fact sheet from the National Health Law Program is designed to inform families about the steps they can take to appeal decisions about their child’s CCS benefits and highlight key resources available to support the process.