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Children and Youth with Special Healthcare Needs in Healthy People 2020: A Consumer Perspective

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Every decade, the U.S. Department of Health and Human Services publishes Healthy People, a document that provides science-based, 10-year national objectives for improving the health of all Americans. Healthy People 2020 includes almost 600 objectives in 42 categories, from Disability and Health to Genomics to Public Health Infrastructure. The authors of Healthy People 2020 recognized that children and youth with special healthcare needs (CYSHCN) deserve dedicated objectives to foster better health in this particularly vulnerable group, so there are about 100 objectives in Healthy People 2020 related specifically to CYSHCN.

To highlight some of these objectives and envision how the objectives might influence CYSHCN as they mature into adults, Genetic Alliance and Family Voices collaborated with the Division of Services for Children with Special Health Needs in the Health Resources and Services Administration’s Maternal and Child Health Bureau (MCHB) to develop a family and consumer perspective on the national health promotion agenda and how it relates to CYSHCN and their families. By focusing on a small portion of the many community and organizational accomplishments related to children and youth with special healthcare needs (CYSHCN) and systems of care, we hope to generate discussions of the gaps that remain, as well as equip families and providers to better advocate and care for CYSHCN and their families. The goals of this document are as follows:

  • Identify HP2020 objectives that directly relate to or support systems of services for CYSHCN and families, as well as those that impact CYSCHN across the lifespan.
  • Relate HP2020 to each of the six MCHB outcomes included in the Envision 2020 strategic plan for CYSHCN.
  • Demonstrate how HP2020 objectives can influence and provide direction for improving systems and services for individuals with special healthcare needs.
  • Promote the importance of HP2020 to improving the health of families and communities and foster collaboration between families and other stakeholders, including federal and state agencies as well as nongovernmental organizations, to inform public policy.

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