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Providing High-Quality Services to Children with Special Health Care Needs (CSHCN) Under Managed Care

Defining the Population

And Its Service Needs


Henry Ireys, Ph.D., Director, Policy Center for Children with Special Health Care Needs, and Associate Professor, Johns Hopkins University School of Hygiene and Public Health, Baltimore, MD.

John Neff, M.D., Medical Director, Children's Hospital and Medical Center, and Professor of Pediatrics and Associate Dean, University of Washington School of Medicine, Seattle, WA.

In order for States to deliver appropriate, high-quality care to Children with Special Health Care Needs (CSHCN), it is necessary to define this population and its service needs. Defining this population is so important because without precise definitions, it is difficult to determine the size of the population of CSHCN, to organize appropriate health services and financing systems, and to develop monitoring systems and accountability processes.

However, according to Henry Ireys, Director of the Policy Center for Children with Special Health Care Needs and Associate Professor at the Johns Hopkins University School of Hygiene and Public Health, there is no consistent definition of the CSHCN population that can be used for all purposes. He explained that the CSHCN population is usually defined by either diagnostic or functional (health status-related) criteria. The prevalence of CSHCN will depend on the type of definition used, which in turn depends on the purpose of the definition.

Overall, Dr. Ireys recommended that an inclusive definition be used for population-based planning, recognizing the common issues and challenges faced by children regardless of their diagnosis. He also identified a number of data sources that can be helpful in developing definitions, including the comprehensive National Health Interview Disability Supplement.

In the second half of this session, John Neff, Medical Director of the Children's Hospital and Medical Center and Professor and Dean at the University of Washington School of Medicine, explored the service needs of the CSHCN population and how these needs vary by diagnosis.

Dr. Neff described how the needs of this population are extensive and include a broad spectrum of services (not always covered in uniform benefit packages), such as case management, specialty providers and hospital services, home and hospice care, durable medical equipment, psychosocial services, nutritional services, and family support. These needs also vary depending on whether the child's condition can be improved in terms of function and life expectancy.

Since a small number of chronically ill children enrolled in Supplemental Security Income (SSI) and Medicaid consume a large proportion of these programs' costs, Dr. Neff said that States must ask themselves a number of challenging questions in order to develop an adequate and coordinated system of care, including:

  • How do we provide an integrated system for children with illnesses that have low prevalence?
  • Are plans ready to meet the increased costs if these children have current unmet needs that are identified through improved management?
  • Are our preventive measures adequate?


Draft definition of children with special health care needs. Maternal and Child Health Bureau, Health Resource Service Administration.

Stein REK, Bauman LJ, Westbrook LE, et al. Framework for Identifying Children Who Have Chronic Conditions: The Case for a New Definition. Journal of Pediatrics Mar 1993;122(3):342-7.

Newacheck PW, Taylor WR. Childhood Chronic Illness: Prevalence, Severity, and Impact. American Journal of Public Health 1992;82:364-71.

Muldoon JH, Neff JM, Gay JC. Profiling the Health Service Needs of Populations Using Diagnosis-Based Classification Systems. Journal of Ambulatory Care Management 1997;20:1-18.

Ireys H, Anderson GF, Shaffer TJ, Neff JM. Expenditures for Care of Children with Chronic Illnesses Enrolled in Washington State Medicaid Program, Fiscal Year 1993. Pediatrics 1997;100:197-204.

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