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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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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 virtual cafe provided a brief overview of key topics, major frameworks, and emerging trends to advance the quality of life and well-being of children with medical complexity and their families. The café was the first of a six-part series led by the Center for Innovation in Social Work and Health at the Boston University School of Social Work.