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
Why did you create the Blueprint?
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.
What is your vision for the Blueprint?
Through the Blueprint, we envision that every child and youth with special health care needs:
- 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
- iThe term "medical home" refers to the concept of a patient-centered medical home (PCMH), which is a model of healthcare delivery that emphasizes coordinated and comprehensive care. https://pubmed.ncbi.nlm.nih.gov/18284087/
What are the elements of the Blueprint?
The Blueprint for Change is a framework described in a series of articles in a special supplement in Pediatrics. Together, they describe the:
- Large, diverse population
- Public health's role in building a system of services that works well
- Rationale, guiding assumptions, principles, and strategies to achieve the vision
- Critical areas of equity, quality of life, access to services, and financing of services
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
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Critical Areas for a well functioning system include quality of Life & well-being, health equity, access to services, and financing of services.
- 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
Who 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.
You can help if you are a:
- Self-advocate, youth, family member, or family-led organization
- Healthcare professional at the community-level
- Public health professional or leader
- National, state, or local organization
- Academic institution that trains healthcare professionals and other related professionals
- Researcher
- Federal agency
How can I help?
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.
How did you create 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:
- A summit in September 2020 with over 160 people
- Four listening sessions for the four critical areas—nearly 80 people participated in each
- Several meetings with organizations that support CYSHCN
We shared the Blueprint in a public request for Information in fall 2020. We included input from the over 70 responses in the Blueprint.
What did you learn from the summit?
Find out in our Meeting Proceedings: Children and Youth with Special Health Care Needs (SYSHCN) Summit Series (PDF - 2 MB).
Where can I find more information?
Review our frequently asked questions.
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