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

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

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

This 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

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

Family Centered Care Tools – For Providers

These 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

These 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

These 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.