Since 1989, the goal of the State Title V programs for CSHCN has been to provide and promote family-centered, community-based, coordinated care for CSHCN and to facilitate the development of community-based systems of services for such children and their families. The long-term outcome of systems development is that all families are able to access health and related services along the continuum of care in a manner that is both affordable and meets their needs; policies and programs are in place to guarantee that children have access to quality health care; providers are adequately trained; financing issues are equitably addressed; and families play a pivotal role in how services are provided to their children.

A long-term national goal was first articulated in Healthy People 2000: National Health Promotion and Disease Prevention Objectives, as follows:

Increase the proportion of states and territories that have service systems for children with or at risk for chronic and disabling conditions as required by Public Law 101-239.

The MCHB, together with its partners, has identified core outcomes for the community-based system of services required for all CSHCN under Title V, under Healthy People 2000, and reiterated under Healthy People 2010 and Healthy People 2020. These outcomes give us a concrete way to measure our progress in making family-centered care a reality and in putting in place the kind of systems all CSHCN deserve. Progress toward the overall goal can be measured using these 6 critical indicators:

  1. Families of CSHCN partner in decision-making regarding their child’s health;
  2. CSHCN receive coordinated, ongoing, comprehensive care within a medical home;
  3. Families of CSHCN have adequate private and/or public insurance to pay for needed services;
  4. Children are screened early and continuously for special health care needs;
  5. Community-based services are organized so families can use them easily;
  6. Youth with special health care needs receive the services necessary to make transitions to adult health care.

This section describes the Nation's progress on each of these indicators, presenting first the individual indicators that make up the outcome measure, followed by any related indicators that are not part of the overall measure. Finally, we discuss the proportion of CSHCN whose care meets each of the 6 outcome goals.

Back to top