Improving the Lives of Children and Youth with Special Health Care Needs (CYSHCN)

CYSHCN are those who have or are at increased risk for chronic physical, developmental, behavioral, or emotional conditions. They also require health and related services of a type or amount beyond that required by children generally.i

According to our National Survey on Children’s Health (NSCH) (PDF - 943 KB), in our country:

  • About 13.6 million children under 18 years old (18.5%) have a special healthcare need
  • 25% of homes has one or more children with a special healthcare need
  • CYSHCN are more likely to live in poverty, be non-Hispanic Black, and more likely to have public insurance than non-CYSHCN

Our approach to CYSHCN

Our bureau’s strategic plan elevates access, equity, capacity, and impact (PDF - 657 KB) for our Maternal and Child Health (MCH) populations. We support CYSHCN and their families during each stage of life, from infancy through adulthood. With our committed partners, our programs promote coordinated, comprehensive, family-centered systems of services where:

  • Children and youth are screened early and continuously
  • CYSHCN receive a medical home model of care that is patient-centered, coordinated, comprehensive, and ongoing
  • Community-based services are organized so families can use them easily
  • CYSHCN receive services necessary to make transitions to adult life, including health care
  • Families have adequate insurance and funding to pay for services they need
  • Families of CYSHCN are partners in decision-making at all levels of care, from direct care to the organizations that serve them

In addition, our programs strengthen the Maternal and Child Health (MCH) workforce through:

  • Training and support for Title V MCH professionals, students, health professionals, paraprofessionals, family leaders, and self-advocates.

Our investments

We strengthen the capacity of state public health agencies, healthcare providers, and organizations that serve CYSHCN.

Investments to improve systems of services

Investments to improve genetic and newborn screening services

Investments for specific conditions

Investments into Technical Assistance (TA) Resource Centers  

Gathering data and tracking progress

We gather program data and national data to track progress. We evaluate the impact of our investments. Improved performance in these measures should indicate improvement in CYSHCN health outcomes

Our National Survey of Children’s Health serves as the data source for over half of our NPMs (9 of 15) and a quarter of our NOMs (7 of 25). It also serves as a key data source for MCH research that informs how we can best improve the health and well-being of CYSHCN.

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

Date Last Reviewed:  October 2021