A New Definition of Children With Special Health Care Needs

THE PROCESS OF DEVELOPING THE NEW DEFINITION

To assist states in their systems development activities, the federal Maternal and Child Health Bureau's Division of Services for Children With Special Health Care Needs (DSCSHCN) established a work group to address the questions posed above and recommend a preferred definition. In selecting members of this work group, an effort was made to represent the expected constituencies for a new definition, including federal and state CSHCN program directors, parents, and health care professionals. In addition, epidemiologists and policy analysts familiar with the needs of the target population were included in the work group. More specifically, the authors of this report comprised the work group. The work group met a total of three times over the course of the fall and winter of 1994–1995.

The work group began its deliberations by establishing a set of principles to help guide the development of a definition. To the extent possible, the definition should:

•  be simple and easy to understand;

•  have utility for major policy and program directions for the federal Title V Program for Children With Special Health Care Needs;

•  have utility for the state Title V systems development mission, specifically the development of comprehensive community systems of family-centered services for children with special health care needs;

•  recognize linkages among primary health services, specialty health services, and related services (eg, education, social services);

•  be specific and measurable; and

•  reflect current scientific knowledge.

Based on these principles, the work group assessed several alternative approaches to defining children with special health care needs. The approaches considered were identified through a review of the literature and federal and state eligibility criteria for programs serving various segments of the population of children with special health care needs. These included population definitions and eligibility criteria for existing state programs for children with special health care needs (Title V), special education and early intervention programs, and the Supplemental Security Income program eligibility criteria. This effort yielded three generic definitional approaches: 1) definitions based on the presence of a chronic condition; 2) definitions based on the presence of a functional impairment; and 3) definitions based on the presence of an elevated service need.

An approach based solely on condition or diagnostic lists was rejected because chronic conditions vary considerably in severity, degree of impairment, and service needs. Furthermore, any complete condition list would be unwieldy and include many children who do not require special services. A definition based solely on functional status was also considered inappropriate because such an approach leaves out many children who may function well but still need special services to maintain function. For example, a child with a seizure disorder who functions well may only do so with medication for control of seizures. Furthermore, there are substantial problems in the measurement of children's functioning, especially for infants and very young children.

Given the substantial problems with the condition list and functional status approaches, the work group gravitated toward an approach based on elevated service needs. Work group members viewed a definition based on elevated service needs as addressing many of the deficits of definitions based on the presence of a chronic condition or functional limitation. That is, a service-based approach does not require making individual judgments concerning the appropriateness of including each of a large number of childhood chronic conditions, as is required when using a condition-based approach to define children with special health care needs. Moreover, a service-based approach can be presented in succinct form, avoiding the potentially unwieldy nature of a condition list. A service-based approach also circumvents some of the major problems inherent in using functional status as a means for defining children with special health care needs. Specifically, a service-based approach does not leave out children who function well but need special services to maintain that level of functioning. Furthermore, problems in the measurement of children's functioning, especially among very young children, are largely obviated using a service-based approach.

A second significant decision, that being to include children at risk for a condition that results in a need for elevated services, was reached by the work group after much discussion. The decision to include at-risk children was made based on the premise that the definition of children with special health care needs was to serve as a planning aid for state and federal maternal and child health agencies. Planning for this population requires focusing on those at risk as well as those with existing special health care needs. Further discussion of the rationale for and the public policy implications of including children at increased risk for special health care needs is presented below.

THE NEW DEFINITION

After much deliberation, the following definition of children with special health care needs was developed by the work group:Children with special health care needs are those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.

Several of the terms and concepts used in this definition require further elaboration. These include the concepts of increased risk, require health and related services, and a type or amount beyond that required by children generally.