This document examines Healthy People 2020 objectives and serves as a companion to Envision 2020, the 10-year strategic plan for the Division of Services for Children with Special Health Needs in the Health Resources and Services Administration’s Maternal and Child Health Bureau (MCHB). Genetic Alliance and Family Voices collaborated with MCHB to create this family and consumer perspective on the national health promotion agenda and how it relates to CYSHCN and their families. Children and youth with special healthcare needs (CYSHCN) deserve effective, efficient services and support. A passionate and powerful community has emerged over the last century to help make that goal a reality. However, though many excellent services exist, the network of programs that deliver them is complicated, often lacking both coordination and baseline data against which to measure their success.

Contents

• Introduction
• Background
• Chapter 1. Children and Youth with Special Healthcare Needs, Then and Now
  • Katie’s Story
• Chapter 2. Core National Performance Measures for CYSHCN
  • Measure 1 Families of children with special healthcare needs partner in decision-making at all levels
  • Measure 2 Children with special healthcare needs receive coordinated, comprehensive care through a medical home
  • Measure 3 Families of children with special healthcare needs have adequate health insurance and financing to pay for needed services
  • Measure 4 Children receive early and continuous screening for special healthcare needs
  • Measure 5 Community-based services are organized for easy use by families
  • Measure 6 Youth with special healthcare needs receive the services necessary to transition to adult healthcare, work, and independence
• Chapter 3. Who is at risk?
  • Risk factors
  • Programs
• Chapter 4. Preparing Individuals and Families for the Future
  • How can HP2020 influence health as individuals age and have to access different systems?
• References
• Acknowledgements