Children with Special Health Care Needs

Children with Special Health Care Needs in United States

United States

The demographics of a state influence the health needs and outcomes of its population. Understanding the demographic breakdown can help state health officials determine priorities for health promotion and disease prevention. Children with special health care needs (CSHCN) have or are at risk for chronic physical, developmental or behavioral conditions and require more health services than most children. These children are a diverse group with varying degrees of health care needs. Families with children with special health care needs may also: 

• Require complex and long-term health services.
• Spend more on health care.
• Experience disparities in accessing care. 

About 21.4% of children with special health care needs missed seven or more days of school in the 2017-2018 school year due to illness or injury, compared with 6.4% of non-CSHCN. 

For effective care, children with complex medical needs should have access to a medical home. The medical home approach involves patient- and family-centered care, comprehensive planning and management of medical care between patients, families and health care providers. The purpose of a medical home is for the family and their health care team to work together to improve the health of CSHCN. Only 42.2% of CSHCN received care in a medical home in 2019-2020. During that same period, only 62.5% of CSHCN had adequate and continuous health insurance, including coverage for providers and services at a reasonable cost. 

The COVID-19 pandemic has caused health care gaps, mental health difficulties and financial hardships for children, which may have disproportionately impacted CSHCN. A number of Medicaid-covered home- and community-based service providers closed permanently during the pandemic, an issue of particular concern due to the fact that Medicaid is the primary payer for services like medical homes. Additionally, for privately insured CSHCN, medical homes may not be covered adequately or remain unaffordable.

Children and Youth with Special Healthcare Needs in Healthy People 2020: A Consumer Perspective. 2013. Genetic Alliance Monographs and Guides. Washington, D.C.: Genetic Alliance and Family Voices. http://www.ncbi.nlm.nih.gov/books/NBK132165/.

The Health Resources and Services Administration Materal & Child Health. 2022. “Children and Youth with Special Health Care Needs.” Health Resource and Services Administration. https://mchb.hrsa.gov/sites/default/files/mchb/programs-impact/nsch-data-brief-children-youth-special-health-care-needs.pdf.

Watts, Molly O’Malley, and MaryBeth Musumeci. 2021. “State Medicaid Home & Community-Based Services (HCBS) Programs Respond to COVID-19: Early Findings from a 50-State Survey.” Issue Brief. KFF. https://www.kff.org/coronavirus-covid-19/issue-brief/state-medicaid-home-community-based-services-hcbs-programs-respond-to-covid-19-early-findings-from-a-50-state-survey/.

Williams, Elizabeth, and MaryBeth Musumeci. 2021. “Children with Special Health Care Needs: Coverage, Affordability, and HCBS Access.” Issue Brief. KFF. https://www.kff.org/medicaid/issue-brief/children-with-special-health-care-needs-coverage-affordability-and-hcbs-access/.