Walker Deborah Klein, Perrin James M, Wells Nora, Vessey Judith A, DiFazio Rachel L
Boston University School of Public Health, Boston, MA, USA.
Harvard Medical School, Massachusetts General Hospital for Children, Boston, MA, USA.
Matern Child Health J. 2024 Nov 1. doi: 10.1007/s10995-024-04010-5.
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.
在过去50年里，有特殊医疗保健需求的儿童和青少年越来越多地融入社区和社会。教育、卫生以及公共卫生/第五章领域不断变化的定义和项目记录了这种更大程度的融入。最深刻的变化发生在教育系统，随着关于融合和家长权利的立法授权的通过。尽管卫生系统没有类似的普遍授权，但医疗补助、儿童健康保险计划以及《患者保护与平价医疗法案》的相继通过，带来了无既往病史和终身保额限制的扩大的医疗保健覆盖范围。1935年最初通过的《社会保障法》第五章，从关注个体医疗服务演变为一种公共卫生系统方法，重点是在社区环境中建立以家庭为中心、协调一致、全面的护理。所有领域的大多数变化都是家长和家庭倡导与参与的结果；母婴健康局是家庭与专业人员伙伴关系的支持性和创新性领导者。在理解各领域差异方面的大量工作导致了最近对公平性的更多关注。
