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Designing Systems of Care that Work for Children with Special Health Care Needs


The challenge of full funding poses a significant obstacle although the authority for full implementation exists in several forms, including the Social Security Act and Healthy People 2010, in addition to the Presidential initiative.

The benefit of the significant research and demonstration that has been conducted cannot be overstated. The pilot projects and research efforts conducted over the past 50 years provide essential information and historical antecedents for a comprehensive system of care for children with special health care needs (CSHCN).

However, those efforts also created multiple, overlapping programs designed to fill gaps and to provide incremental services and coverage, a situation that is wasteful and inefficient from the public perspective and frustrating for the families these programs are designed to serve. Only a much more comprehensive, integrated system, based on the common agenda outlined in the six performance objectives, will provide sustained coverage and services for CSHCN. And while insurance is a necessary prerequisite for such a system, insurance coverage alone is not enough; funding is required for capacity-building throughout the system as well as for insurance programs.

The role of the States in implementing systems of care for CSHCN is critical. State-level leadership will be essential in implementing the New Freedom Initiative agenda, as States are the locus for the practical elements of health policy.

The front-line providers and applied researchers who have experience implementing pilot programs for CSHCN and working with families and communities must be included in policy discussions. In this way, the evidence base developed through years of research and development can be marketed to its "end users," the decisionmakers who are responsible for designing and funding health care systems. Moreover, the funding for these systems must come from the full range of agencies that touch CSHCN and their families, including education and labor programs as well as the private sector.

To accomplish full implementation and achieve the six performance objectives will require a sustained effort at all levels. Several strategies are available to begin this effort, including the development of Healthy People 2010 Coalitions (already in existence in several states). The performance objectives can provide a structure and a common agenda around which to organize, and States and communities can begin by building on the strengths of their current systems.

In addition, political advocacy will be a critical element of any strategy. The key elements of advocacy are referred to as the "Three A's":

  • Awareness (concern, passion)
  • Advancement (strategy development)
  • Action (coalition building and media involvement)

These elements, combined with a thorough understanding of the workings of legislative bodies and the information needs of legislators, can build and strengthen a constituency for CSHCN at the community, State, and Federal levels to assure comprehensive, coordinated, community-based care for all children with special health care needs.

Current as of July 2003

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Internet Citation:

Designing Systems that Work for Children with Special Health Care Needs. Workshop Brief, User Liaison Program, September 23-25, 2002. Agency for Healthcare Research and Quality, Rockville, MD.


The information on this page is archived and provided for reference purposes only.

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