Children and Youth with Special Health Care Needs

MCHB is seeking public input on A Blueprint for Change: Guiding Principles for Advancing the System of Services for Children and Youth with Special Health Care Needs (CYSHCN) and Families (Blueprint) (PDF - 208 KB)

How to submit: Please submit comments via email to CYSHCN@hrsa.gov and reference "CYSHCN Blueprint RFI" in the subject line.

Deadline: Monday, November 30, 2020 by 11:59 p.m. Eastern Time.

Responses: HRSA will not respond to any individual comments, except to clarify written responses. HRSA also will not respond to questions about potential policy issues related to this RFI.

Please note: Responses to this RFI may be made publicly available; do not include any proprietary or confidential information.

Children and youth with special health care needs (CYSHCN) are those who "have or are at increased risk for chronic physical, developmental, behavioral or emotional conditions and also require health and related services of a type or amount beyond that required by children generally.1 An estimated 13.5 million children in this country, or approximately 20% of U.S. children under age 18 years of age, have a special health care need.2 CYSHCN and their families often need services from multiple systems - health care, public health, education, mental health, and social services.

Learn more about CYSHCN (PDF - 942 KB).

What are our vision and goal?

Our vision is for optimal health and quality of life for all CYSHCN and their families.

Our goal is creating an effective system of care for CYSHCN - a challenging but critical need for public health leaders at every level.

What is an effective system of care?

An effective system of care for CYSHCN ensures:

  • CYSHCN are screened early and continuously
  • Families of CYSHCN are partners in decision-making
  • Community-based services are organized so families can use them easily
  • CYSHCN can receive care in a medical home
  • There is adequate insurance and funding to cover services
  • CYSHCN receive services necessary to make transitions to adult health care.

Improving the system of care for CYSHCN 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 all CYSHCN and their families in the United States. We fund programs that support states, communities, and organizations to improve systems of care. We also fund programs for children with specific conditions.  

Our programs are:

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

Learn about the MCHB Programs and Initiatives specifically supporting CYSHCN.

  • Systems of care
  • Screening genetic, newborn, and early childhood screenings
  • Condition-specific programs

Contact Us

Key MCHB Staff

301-443-2170

Open Funding Opportunities

View open and previously funded opportunities.

Access the HRSA grants forecast.

Related Resources

MCHB's Technical Assistance Centers

Advisory Committee on Heritable Disorders in Newborns and Children

National Survey of Children's Health

Find Grant Recipients  - Search for active and awarded grants from FY 2010 - present

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

2 National Survey of Children's Health. (2020). Retrieved August 12, 2020.

Date Last Reviewed:  October 2020