Children & Youth With Special Health Care Needs (CYSHCN)

Definition of Children and Youth with Special Health Care Needs

boy with special needsChildren and youth with special health care needs (CYSHCN) are defined by the Department of Health and Human Services (HHS), Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau (MCHB) as:

"Those who have or are at increased risk for a chronic physical, development, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally”

This definition is broad and inclusive, and it emphasizes the characteristics held in common by children with a wide range of diagnoses.

View additional literature on medical home for children and youth with special health care needs .

Video: What Has Your Experience as a Parent of a Child with Special Health Care Needs Been Like?

CYSHCN and the Medical Home
The medical home model was introduced by the American Academy of Pediatrics in 1967 as a standard of primary care provision for CYSHCN. Since then, the model has evolved to be the standard of care for all children and youth. The NCMHI works to ensure that all children and youth, particularly those with special health care needs, receive the care they need within a medical home.

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Prevalence of Special Health Care Needs in Children and Youth

Childhood disability is increasing and emotional, behavioral, and neurological disabilities are now more prevalent than physical impairments. (The Future of Children, Spring 2012)

  • 10.2 million children in the US (15 percent of all US children) have special health care needs based on the MCHB definition (2009/10 National Survey of Children with Special Health Care Needs)
  • More than 20% of US households with children have at least one child with special needs
  • 16% of CYSHCN are reported to not receive all the services they need
  • More than 94% of CYSHCN have a regular source of care when they are sick
    • 78% is a private doctor's office
    • 13% is a clinic or health center

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Information for Families

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Information for Providers

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