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Children with Special Healthcare Needs

Developing Integrated Systems of Care

Workshop Brief for Senior State and Local Officials

This workshop was designed for senior State and local officials from the executive and legislative branches who have responsibility for designing, implementing, and managing initiatives for children with special healthcare needs (CSHCN). The workshop was held in Independence, Ohio, November 3-5, 1999.

About the Workshop Sponsor.


As States strive to improve the quality and cost-effectiveness of healthcare systems for their citizens, much attention has been devoted to the question of how to best serve CSHCN.

Particular focus has been paid to the importance of developing comprehensive and integrated systems of care for children living with chronic physical, developmental, behavioral, or emotional conditions to ensure that these children receive the range of needed medical, therapeutic, and support services. Without these needed services, the ability of CSHCN to communicate, attend school, join the work force, and participate actively in community life may be compromised (Neff and Anderson, 1995).

The challenges of providing high-quality services to CSHCN are many. For example, identifying these children in an accurate but administratively feasible way is very important to ensuring they receive needed care. But identifying them is difficult for a variety of reasons, including the fact that managed care plans in which these children are enrolled may be precluded from screening for certain conditions.

Once these children are identified, their having access to a comprehensive network of qualified providers to deliver needed primary, specialty, and support services can be pivotal. Designing care systems that will facilitate integration among the different medical, early intervention, special education, mental health, and family support providers from whom CSHCN receive services is an important factor affecting system effectiveness.

Complicating the challenge of organizing integrated service delivery systems for CSHCN is the diverse array of insurance programs and accompanying systems through which these children receive services, including Medicaid, Title V CSHCN programs, and private health insurance programs.

Passage of the Balanced Budget Act of 1997 also authorized States to establish State Children's Health Insurance Programs (SCHIPs).

SCHIPs have become an important new coverage vehicle for CSHCN. National estimates indicate that 16.9 percent of children in the SCHIP-eligible population of families with incomes up to 200 percent of poverty have special healthcare needs (Newacheck et al., 1998). Regardless of the insurance program through which CSHCN are covered, an increasing number of children with chronic health conditions are served through managed care systems.

Whether served through managed care or other types of arrangements, monitoring the quality of care provided to children with chronic conditions is of paramount importance. For example, States may want to know the extent to which CSHCN get appropriate primary and preventive care and have access to the range of specialty services, medications, equipment, and support services that they need. Although developing quality measurement strategies appropriate for CSHCN has been a particularly challenging task, important new strides have been made in recent years.


The Agency for Healthcare Research and Quality's (AHRQ) User Liaison Program designed this workshop to address the information needs of public officials striving to ensure that ongoing changes in our healthcare system translate into high-quality and coordinated systems of care for CSHCN.

This workshop addressed the following healthcare policy concerns:

  • Identifying children with special healthcare needs and state-of-the-art research on the use of identification tools in the practice setting.
  • Improving services for CSHCN by involving families in the development and ongoing oversight of programs serving this population.
  • Studying the implications of plan characteristics and alternative system designs for the delivery of high-quality services for CSHCN.
  • Operationalizing issues faced by States in their efforts to provide high-quality services to CSHCN, including developing provider networks and equitable financing arrangements.
  • Examining the capacity of non-medical systems through which CSHCN are served to meet the complex needs of these children and their families.
  • Studying the latest research on the development of approaches to measure and monitor the quality of care provided to CSHCN.


This workshop was intended for State and local government officials concerned with the design, financing, and administration of appropriate healthcare and accompanying quality assurance systems for children, particularly CSHCN.


Neff J, Anderson G. Protecting children with chronic illness in a competitive marketplace. JAMA 1995; 275:1866-9.

Newacheck P, et al. New Estimates of Children with Special Health Care Needs and Implications for the State Children's Health Insurance Program. Washington, DC: Maternal and Child Health Policy Research Center, 1998 Mar.


The 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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