Our goal
We want every family to get what their child needs so that they can play, go to school, and grow up to become a healthy adult. We want parents and siblings to thrive too.
A national framework for a system of services for children and youth with special health care needs (CYSHCN) where they enjoy a full life and thrive in their community from childhood through adulthood
We want every family to get what their child needs so that they can play, go to school, and grow up to become a healthy adult. We want parents and siblings to thrive too.
Families of children and youth with special health care needs (CYSHCN) tell us that the current system of services is not working.
According to the National Survey of Children’s Health (PDF - 296 KB), 85% of these children and youth still do not receive services via a well-functioning system. Fewer than half of CYSHCN have a medical homei that meets their needs. Nearly all CYSHCN face major challenges as they transition to adult systems of care.
Through the Blueprint, we envision that every child and youth with special health care needs:
The Blueprint for Change is a framework described in a series of articles in a special supplement in Pediatrics. Together, they describe the:
This special supplement is freely available. It includes this introduction followed by seven articles:
Introducing the Blueprint for Change: A National Framework for a System of Services for Children and Youth with Special Health Care Needs
Critical Areas for a well functioning system include quality of Life & well-being, health equity, access to services, and financing of services.
Advancing the system for CYSHCN requires leadership, partnership, will, opportunity, persistence, and stakeholders coming together to achieve the vision presented in the Blueprint for Change.
You can help if you are a:
You are likely already working to improve the health of CYSHCN and their families. So, you are already helping to implement the Blueprint. Whatever your specific goals or activities, there is likely something in the Blueprint to help you do it even better.
Together, we can make an even greater impact. Advocate, inform, share, train, plan, and educate others. Set aside resources and coordinate activities. All these help build a better health care system.
Visit the American Academy of Pediatrics’ National Center for a System of Services for Children and Youth with Special Health Care Needs. This national center supports implementation of the Blueprint.
Over a two-year period, our Division of Services for Children with Special Health Needs (DSCSHN) worked with people and organizations across the country.
Partners included CYSHCN and their families, consumers, health care professionals, public health leaders, researchers, and academic institutions.
We hosted:
We shared the Blueprint in a public request for Information in fall 2020. We included input from the over 70 responses in the Blueprint.
Find out in our Meeting Proceedings: Children and Youth with Special Health Care Needs (SYSHCN) Summit Series (PDF - 2 MB).
Review our frequently asked questions.