Children with Special Health Care Needs

Children and youth with special health care needs (CSHCN) “have or are at increased risk for chronic physical, developmental, behavioral or emotional conditions and who also require health and related services of a type or amount beyond that required by children generally.”1

  • Nearly 20% of U.S. children under age 18 years of age have a special health care need.
  • One in five U.S. families have a child with a special health care need.
  • Children and youth with special health care needs and their families often need services from multiple systems – health care, public health, education, mental health, and social services.

What are our goals?

Our vision is for optimal health and quality of life for all children and youth with special health needs and their families.

Creating an effective system of care is both challenging and critical for public health leaders at the national, state and local level.

What is an effective system of care?

An effective system of care for CSHCN ensures:

  • Families are partners in care.
  • Screening occurs early and continously.
  • Families can easily use community-based services.
  • Children and youth have access to an accessible, family-centered, comprehensive medical home.
  • There is adequate insurance and funding to cover services.
  • Families and providers plan for transition to adult care and services.

Improving the system of care for CSHCN can maximize outcomes for women, pregnant women and children in general. What works for the most vulnerable should work for all.

How do we accomplish our goals?

We provide leadership and resources to improve the quality of life for children with special health needs and their families in the United States.

We support programs that support states, communities, and organizations to improve systems of care.

What principles do our programs follow?

All programs are:

  • evidence-base/informed;
  • ensure health equity;
  • focused on the whole-person; and
  • innovative and collaborative.

Learn about CSHCN Programs and Initiatives

1McPherson et al (1998) Pediatrics 102/1.


Date Last Reviewed:  August 2019