Children and Youth with Special Health Care Needs: Progress Towards More Family-Centered Systems of Care.

Abstract

Children and youth with special health care needs have increasingly been included in community and society over the past 50 years. Changing definitions and programs in the education, health, and public health/Title V sectors document this greater inclusion. The most profound change was in the education system, with the passage of legislative mandates for inclusion and parental rights. Although the health system has no similar universal mandate, the sequential passage of Medicaid, Children's Health Insurance Plan, and the Patient Protection and Affordable Care Act led to expanded health care coverage with no pre-existing conditions and lifetime caps. Title V of the Social Security Act, originally passed in 1935, evolved from a focus on individual medical services to a public health systems approach focusing on building family-centered, coordinated, comprehensive care in community settings. Most of the changes in all the sectors are the result of the advocacy and engagement of parents and families; the Maternal and Child Health Bureau was a supportive and innovative leader for family-professional partnerships. Much work on understanding disparities across the sectors has led to more recent focus on equity.