Who are Children and Youth with Special Health Care Needs (CYSHCN)?

Much of what we know about the demographics of CYSHCN comes from National Survey of CSHCN (NS-CSHCN) and the National Survey of Children’s Health (NSCH).  Data from these surveys and others have been analyzed and reported in a easy-to-use searchable website, the Data Resource Center.

  • Janessa-and-Joelle.jpgApproximately 14.6 million children ages 0–17 years in the United States (19.8%) have special health care needs.*
  • Prevalence of CSHCN ranges from 14.4% to 26.4% across the 50 states and the District of Columbia.*
  • About 65% of CSHCN experience more complex service needs that go beyond a primary need for prescription medications to manage their health condition.*
  • Compared to children not meeting CSHCN criteria (non-CSHCN), CSHCN are more likely to be male (58.1% vs. 49.4%) and older 12–17 years (43.2% vs. 31.8%)*
  • account for 40% or more of medical expenditures for children overall**

*Child and Adolescent Health Measurement Initiative (2013). “Who Are Children with Special Health Care Needs (CSHCN).” Data Resource Center, supported by Cooperative Agreement 1-U59-MC06980-01 from the U.S. Department of Health and Human Services, Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau (MCHB). Available at www.childhealthdata.org. Revised 4/15/13.

**Newacheck P, Kim S. A national profile of health care utilization and expenditures for children with special health care needs. Archives of Pediatric & Adolescent Medicine. 2005;159:10–17. Download.