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

A Workshop Brief for State and Local Policymakers

This workshop was designed for policymakers in the legislative and executive branches of State and local governments who are interested in the design, financing, and administration of appropriate health care and accompanying quality assurance systems for Children with Special Health Care Needs (CSHCN). The workshop was held in Los Angeles, California, on September 23-25, 2002.

About the Workshop Sponsor.


The Agency for Healthcare Research and Quality's (AHRQ) User Liaison Program (ULP) and the Health Resources and Services Administration's (HRSA) Maternal and Child Health Bureau to designed this workshop to address the information needs of public officials seeking to ensure that ongoing changes in our health translate into high-quality and coordinated systems of care for CSHCN.


Following this workshop, participants were expected to be better able to:

  • Design, monitor, and evaluate systems of care for CSHCN.
  • Apply promising practices for serving CSHCN and their families.
  • Incorporate the family perspective in the design and oversight of services for CSHCN.
  • Understand the role of performance objectives and the potential usefulness of national and State-level data sources for measuring progress toward these objectives.
  • Operationalize workable strategies for measuring family involvement, implementation of the medical home, and the quality of care provided to CSHCN.

Summary of Key Themes

National Context and New Initiatives

The emphasis on improving the delivery and quality of care for CSHCN has become more urgent since the President's New Freedom Initiative was released in 2001. Progress toward the objectives in this initiative may be monitored on both the national and State levels using six performance outcomes as an organizing framework.

Family Participation and Satisfaction

Families of CSHCN are the one constant in their children's lives and should be at the center of their care. Several promising approaches to involving families in systems of care for CSHCN have been identified. They range from parent participation in the design and oversight of health care delivery systems to assessing parents' satisfaction with their children's care. Some projects, such as the Measuring and Monitoring project, are working toward measuring family involvement in programs and systems for CSHCN.

The quality of care provided to CSHCN is closely related to families' satisfaction with care. To help ensure that high quality care is provided, indicators—such as those in the Child Health Toolbox and used by Washington State in its efforts toward quality improvement—to monitor the quality of services for CSHCN have been designed. These indicators can be used as a basis from which to begin to implement quality improvement strategies at the provider level.

Access to Medical Home

The Medical Home Model provides an example of the design and implementation of a system of comprehensive and coordinated care for CSHCN. The provider perspective on the medical home and the health plan perspective on the provision of coordinated care for CSHCN often are not congruent. Measures that can be used to assess whether primary care services meet the standards of the medical home have recently been developed and can be used in efforts toward the widespread implementation of the medical home concept.

Access to Affordable Insurance

The Child Health Insurance Research Initiative (CHIRI™), sponsored by AHRQ, the David and Lucille Packard Foundation, and HRSA, provides a rich source of information on the success of Medicaid and State Children's Health Insurance Program (SCHIP) in serving children, including children with special health care needs. Some recent findings from CHIRI™ projects contain valuable information relevant to service delivery to CSHCN.

Efforts have also been made to develop and evaluate systems for risk-adjusting payments to plans and providers for the care of CSHCN. Research on models for risk adjusting payments and examples of the implementation of these payment systems on the State level give insight to the potential for an equitable payment mechanism that compensates plans for the additional cost of serving children with complex needs.

Early and Continuous Screening

The CSHCN population is very diverse, presenting major challenges in creating standards for the identification of CSHCN. Currently, a variety of approaches are used to identify CSHCN within service delivery systems. Screening tools to identify CSHCN for quality assurance measures have been recently developed. Recent research provides comparative results of several identification strategies as they have been applied in service delivery settings.

Community Services

Mental health services can be an essential component to the care of a child with special needs and their families. Research has been done to describe the types of mental health services used by children and the associated cost of those services. Strategies for integrating physical and mental health services at the county level have been implemented to create an improved environment for service delivery.


Fully implementing systems of care for CSHCN and achieving the six performance objectives will require a sustained effort at all levels. There will be funding and other challenges, however the pilot projects and research efforts conducted over the past 50 years provide essential information that will be invaluable in implementing the initiative.

AHRQ's User Liaison Program (ULP) disseminates health services research findings in easily understandable and usable formats through interactive workshops. Workshops and other support are planned to meet the needs of Federal, State, and local policymakers, and other health services research users, such as purchasers, administrators, and health plans.

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