Blueprint for Change

Families of CYSHCN tell us that the current system of services is not working for their children. According to the National Survey of Children’s Health (PDF - 296 KB), 85% of CYSHCN still do not receive services via a well-functioning system.

In partnership with families, healthcare professionals, and other experts in the field, we developed this framework to advance the vision that CYSHCN:

• Enjoy a full life, from childhood through adulthood
• Thrive in systems that 
  • Support their families and their social, health, and emotional needs
  • Ensure dignity, autonomy, independence, and active participation in their communities

Elements of the Blueprint

The Blueprint for Change is a framework described in a series of articles that comprise a supplement in Pediatrics. Together, they describe:

• The sizable, diverse population of CYSHCN
• The public health role in building a well-functioning system of services
• A rationale, guiding assumptions, principles, and strategies to achieve the vision
• The critical areas of equity, quality of life, access to services, and financing of services

This special supplement in Pediatrics is freely available and 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

• Guiding Principles for a System of Services for Children and Youth with Special Health Care Needs (CYSHCN) and their Families
• Children and Youth with Special Health Care Needs: A Profile
• Progress, Persistence, and Hope: Building a System of Services for CYSHCN and their Families
• Health Equity for Children and Youth with Special Health Care Needs: A Vision for the Future
• Quality of Life and Well-Being for Children and Youth with Special Health Care Needs and their Families: A Vision for the Future
• Access to Services for Children and Youth with Special Health Care Needs and their Families: Concepts and Considerations for an Integrated Systems Redesign
• Financing Care for CYSHCN in the Next Decade: Reducing Burden, Advancing Equity, and Transforming Systems

How You Can Help

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. 

Whether you are:

• Self-advocates, youth, family members, and family-led organizations
• Healthcare professionals at the community-level 
• Public health professionals and leaders
• National organizations
• State and local organizations
• Academic institutions that support training for healthcare professionals and other allied professions
• Researchers
• Federal agencies

You can read the Blueprint and adopt it. Use it as a lens through which you take action. Advocate, inform, share, train, plan, educate others, allocate resources, and coordinate activities that help build a better healthcare system for CYSHCN.

Creating the Blueprint for Change

Over a two-year period, our Division of Services for Children with Special Health Needs (DSCSHN) gathered people and organizations across the country to collaborate. Partners included CYSHCN and their families, consumers, healthcare professionals, public health leaders, researchers, and academic institutions.

We hosted a summit in September 2020 that engaged over 160 participants. We continued the conversation in four listening sessions on the four critical areas, which drew an average of 80 participants each, as well as several meetings with organizations that support CYSHCN. We also shared the Blueprint via public Request for Information in fall 2020 and received over 70 responses, which we incorporated into the final version of the Blueprint.

For more information on the recommendations and considerations from the summit series, access: Meeting Proceedings: Children and Youth with Special Health Care Needs (SYSHCN) Summit Series (PDF - 2 MB).

For more information about this Blueprint for Change, please see our frequently asked questions.