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2018. Tips for families on working with the national standards. Washington, DC: Association of Maternal and Child Health Programs; [Portland, ME; Washington, DC]: National Academy for State Health Policy, 2 pp. (A Critical Tool to Improve Systems of Care for Children and Youth with Special Health Care Needs)

Annotation: This document provides guidance for families on using the National Standards for Systems of Care for Children and Youth with Special Health Care Needs (CYSHCN). It explains that these standards offer a framework for families, health policymakers, providers, and insurers to collaboratively improve care systems for CYSHCN. The document emphasizes the importance of these standards, noting that one in five U.S. children have special health care needs, yet four out of five CYSHCN families report not receiving care in a well-functioning system. It outlines practical ways families can use the standards as advocacy tools, including countering policies that overlook CYSHCN needs, promoting family partnerships in health-related services, and sharing knowledge with other families. The second page highlights successful implementation examples from Iowa, Georgia, Kansas, and Minnesota, and describes available resources including assessment tools, communication materials, and online toolkits to help families work with the standards to improve care systems.

Keywords: State CHSCN programs, Standards, Family Centered Health Care, State CHSCN programs, Case Studies, Iowa, Georgia, Kansas, Minnesota
   

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