Standards for Systems of Care for Children and Youth with Special Health Care Needs

STANDARDSThis set of standards, built around a framework and the guidance of a diverse set of stakeholders, represents one of the first efforts of its kind to comprehensively and systematically collect and categorize system standards that affect CYSHCN and their families, The standards address the core components of the structure and process of an effective system of care for CYSHCN. They were derived from a comprehensive review of the literature, early project guidance from more than 30 key informants, case studies of standards currently in use within selected sites, and input and guidance from a national work group comprised of national and state leaders representing state Title V CYSHCN programs, state Medicaid agencies, pediatric providers, health plans, children’s hospitals, families/consumers, health services researchers, and others. They are intended for use or adaptation by a wide range of stakeholders at the national, state and local levels.

Family Caregivers of Children with Special Health Care Needs (2013)

familycaregiverThis new fact sheet describes the need to support family caregivers as they take care of children with special health care needs. It presents facts, needs, and solutions related to supporting family caregivers presented from the perspective of a caregiver. Published by the Institute’s Minnesota Leadership Education in Neurodevelopmental and Related Disabilities Program (MN LEND).

Powerful Partnerships: A Handbook for Families and Providers Working Together to Improve Care

Tpowerfulhis guide is intended to help both family members and healthcare professionals who are working together to improve care for children with special healthcare needs. Joining together in multi-disciplinary teams, family members and providers are increasingly working as equal partners to improve care. Collaborating as equals may be new for family members and providers. This guide includes information and guidance on how to get the most out of this potentially powerful partnership.

This is a publication of the National Initiative for Children’s Healthcare Quality (NICHQ) who seek to improve children’s health by improving the systems responsible for the delivery of children’s healthcare. For more information about NICHQ, please visit http://www.nichq.org

Family Centered Care Tools – For Providers

fccaThese Family-Center Care Self-Assessment Tools are designed as an opportunity for families and health care practices to assess current areas of strength and identify areas for growth, plan future efforts, and track progress toward family centered care. This publication is for providers.

Family Centered Care Tools – Family Tool

fccaThese Family-Center Care Self-Assessment Tools are designed as an opportunity for families and health care practices to assess current areas of strength and identify areas for growth, plan future efforts, and track progress toward family centered care. This tool is for families.

Family-Centered Care Tools – User Guide

fccaThese Family-Center Care Self-Assessment Tools are designed as an opportunity for families and health care practices to assess current areas of strength and identify areas for growth, plan future efforts, and track progress toward family centered care. This is the user guide.