Youth with Chronic Conditions and Disabilities

U.S. adolescents are a more diverse group than ever before. This diversity extends to youth’s health care needs, which can include managing chronic conditions or disabilities. Childhood disabilities can have lifelong effects on health, educational, vocational, and economic outcomes.^1,2 As a group, youth with chronic conditions and disabilities have more complex health care needs, are more likely to have their needs go unmet, and experience various barriers—including social stigma—to full participation in activities.² Nevertheless, given the appropriate supports and opportunities, youth with disabilities can meet these challenges and flourish.

Disability does not have a single definition; instead, it is a concept that reflects multiple perspectives. Some definitions of disability focus on chronic health conditions: the Maternal and Child Health Bureau defines children with special health care needs as those with “increased risk for a chronic physical, developmental, behavioral, or emotional condition, and who also require health and related services of a type or amount beyond that required by other children generally.” Others focus on limitations imposed on routine activities of daily life: according to the CDC, a disability is “any condition of the body or mind (impairment) that makes it more difficult for the person with the condition to do certain activities (activity limitation) and interact with the world around them (participation restrictions).” In general, our understanding of disability has evolved from a predominantly medical model centered on health conditions to one that acknowledges the many dimensions of disability. Additionally, the experiences of people with disabilities can vary greatly depending on social and environmental barriers.²

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