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. A long-term national goal was articulated in Healthy People 2000: National Health Promotion and Disease Prevention Objectives (also included in the 2010 edition) 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.
HRSA's Maternal and Child Health Bureau (MCHB), together with its partners, has identified six core outcomes to promote the community-based system of services mandated for all children with special health care needs under Title V, Healthy People 2010, and the President’s New Freedom Initiative (NFI) designed to break down barriers to community living for people with disabilities. 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 children with special health care needs deserve. Progress toward the overall goal can be measured using these six critical indicators:
- Families of children and youth with special health care needs partner in decision making at all levels and are satisfied with the services they receive;
- Children and youth with special health care needs receive coordinated ongoing comprehensive care within a medical home;
- Families of CSHCN have adequate private and/or public insurance to pay for the services they need;
- Children are screened early and continuously for special health care needs;
- Community-based services for children and youth with special health care needs are organized so families can use them easily;
- Youth with special health care needs receive the services necessary to make transitions to all aspects of adult life, including adult health care, work, and independence.