Children and youth with special health care needs (CYSHCN) have an increased risk of chronic physical, developmental, behavioral or emotional conditions and may require supports and services beyond that required by children generally.

- This population also encompasses children/youth with disabilities, chronic conditions, and medical complexity. Examples include autistic children, children with epilepsy, cerebral palsy, spina bifida, traumatic brain injury, spinal cord injury, among others. 

- About 20%-26% of children in the United States has a special health care need.

- 87% of CYSHCN do not receive care in a well-functioning system, or in other words, do not feel that the current health care system is meeting their needs.

- Close to 61% of CYSHCN do not have access to a medical home, the standard model of care for all children, including CYSHCN.  

 

Initiatives

The AAP programs, activities, and initiatives included below provide resources, tools and strategies to improve systems and supports for CYSHCN, including children/youth with disabilities, chronic conditions and medical complexity and their families, helping them thrive from birth through their journey into adulthood.  

Autism

Discover AAP policy, tools, and resources to support clinicians caring for autistic children/youth and their families/caregivers.

Cerebral Palsy

Discover AAP policy, tools, and resources to support clinicians caring for children/youth with cerebral palsy.

Children with Medical Complexity

Discover resources to support pediatricians and health care teams caring for children with medical complexity. Learn ways to build successful partnerships with their families and caregivers.

Awareness of Congenital Heart Defects (CHD) Among Healthcare Clinicians

Access the CHD Toolkit for resources to support physicians across specialties in improving care continuity and ensuring that people with CHDs receive specialized care needed throughout their lives.

Conditions Present at Birth/Birth Defects

View resources to support families, pediatricians, and other health care professionals in providing care for infants and children with birth defects and related conditions.

Congenital Heart Public Health Consortium

Learn how the Congenital Heart Public Health Consortium (CHPHC) works to prevent congenital heart defects (CHDs) and improve outcomes for children and adults with CHDs by providing leadership, advancing research and informing public health policy.

Early Hearing Detection and Intervention Provider Education Center

Learn how early hearing detection and intervention efforts can support optimal child development.

Epilepsy

Access information and resources to support pediatricians and other health care professionals working with children and youth with epilepsy and their families.

Medical home

Discover practical tools and resources to support patients, clinicians, medical staff and families in implementing a medical home model of care.

Multi-disciplinary National Advisory Board (NAB) to Coordinate and Strengthen the System of Services for CYSHCN

Learn about the work of the CYSHCN National Advisory Board who provide recommendations to the CYSHCN field to improve outcomes for CYSHCN and their families.

National Center for a System of Services for Children and Youth with Special Health Care Needs (CYSHCN)

Explore the National Center which supports Title V programs and their allies in advancing the system of services for CYSHCN and their families at the community, state and national levels.

Get Involved

Council on Children with Disabilities (COCWD)
Get involved with this AAP group of over 800 members working on policy, advocacy, education and membership efforts to support the care of children with disabilities.
Section on Hospice and Palliative Medicine (SOHPM)
Get involved with this AAP group of over 500 members working on policy, advocacy, education and membership to support the care of children with serious illness.
Last Updated

12/03/2025

Source

American Academy of Pediatrics