Children and Youth with Special Health Care Needs (CYSHCN)

Who are CYSCHN?

CYSHCN have or are at increased risk for having chronic physical, developmental, behavioral, or emotional conditions. They have conditions such as asthma, sickle cell disease, epilepsy, anxiety, autism, and learning disorders. They may require more specialized health and educational servicesi  to thrive, even though each child’s needs may vary.

How many children have a special health care need?

According to our National Survey of Children’s Health (NSCH) (PDF), in our country about 20% of children under 18 years old have a special health care need.

Which disparities in outcomes do we work to overcome?

The NSCH shows that there are significant differences between the health and well-being of CYSCHN and their families compared to children without special health care needs.

Some examples include:

• Well-being: Children 6-17 years old with a special health care need flourish at half the rate of children without a special health care need (34.4% to 69.1%)ii
• School engagement: Children 6-17 years old with a special health care need are engaged in school at about half the rate of their counterparts without a special health care need (26.3% to 47.9%)iii
• Parental health: Only 55% of CYSCHN caregivers report excellent or very good health compared to nearly 70% of parents who do not have a child with a special health need)iv
• Poverty and material hardship: Families of CYSCHN are less likely to meet basic needs like food, housing and medical carev

Proportion of children who experienced household food insufficiency, housing hardship, and medical hardship in the past 12 months, by special health care needs status, 2022

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What guides our national efforts to improve public health systems for CYSCHN?

We created the Blueprint for Change. It guides our national improvements toward system-level change. The Blueprint is a series of articles in the journal, Pediatrics. It provides the national framework for improving systems of services for CYSCHN.

How does the Blueprint for Change help create change?

It focuses on areas that are important to families:

• Health equity
• Quality of life and well-being
• Access to services
• Financing of services

The Blueprint for Change guides people and organizations at all levels to improve the journey for a child with special health care needs. The framework encourages changes so that families:

• Can navigate the health and social support systems
• Get predictable care and services, for example:
  • A community health worker helps a family sign up for nutrition benefits.
  • A care coordinator works with a family to find transportation to get to and from a doctor’s office.

How does this work help families?

The system of services and supports can be complex, depending on a child’s needs. We want to make it easier for families to find the right clinicians, equipment, and treatments. Families should have access to quality services no matter where they live or their ability to pay.

How do we help our systems improve?

We improve systems by working with families, healthcare professionals, and public health leaders. Together with our partners, we help these children, youth, and their families throughout their lives, from infancy through adulthood.

Which groups play a critical role in driving change?

Families

We develop and fund programs that require partnerships with families. We serve as a federal voice, urging the inclusion of self-advocates and ways for families to be represented and heard at all levels of care. 

Families are often the best guides. They can tell us how to make the systems easier to navigate. Children and youth have better outcomes when their families engage with healthcare professionals. 

Through our partnerships with families and family-led organizations, we: 

• Identify emerging issues
• Develop best practices
• Improve the systems that serve families

Healthcare professionals

We support healthcare professionals in clinical, community, research, and other settings. They work with families to get the services their children need. Our funding helps them make the most of rapid advances in technology, treatments, and care. 

We design and fund programs to develop best practices and innovative approaches, and family engagement. Some of our efforts, like newborn screening, reach nearly everyone. Other programs focus on specific conditions such as epilepsy or sickle cell disease.

Public health leaders

We help public health leaders to provide, improve, and better coordinate the clinical care and other services that families need.

We support public health leaders in state governments, universities, and community-based organizations to: 

• Identify emerging issues
• Develop partnerships
• Use best practices
• Measure what matters across programs that serve children and families

• iMcPherson et al (1998) Pediatrics 102/1
• iiNSCH 2021 data. NSCH Indicator 2.4: Flourishing for children and adolescents, age 6-17 years. Based on 3 components: "How often does this child: (1) show interest and curiosity in learning new things, (2) work to finish tasks they start, and (3) stay calm and in control when faced with a challenge?"
• iiiNSCH 2016-2021 data. Indicator 5.2: How often does this child engage in school: cares about doing well in school and does required homework, age 6-17 years?
• ivNSCH 2016-2021 data. Indicator 6.1/6.1a – physical health status of the primary caregiver/parent.
• vNSCH Material Hardship Among Children Data Brief, 2022

Learn about other efforts we invest in—visit the Division of Services for Children with Special Health Needs.