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

Early & Continuous Screening

The diversity of the children with special health care needs (CSHCN) population presents a challenge to creating effective standard identification methods. The breadth of the definition of CSHCN leaves us without a "gold standard" by which to identify all CSHCN. To address this problem, the Foundation for Accountability (FACCT) has recently developed and tested a screening tool that identifies children based on the existence and consequences of a chronic condition.

Screening Tools

The goal of the FACCT CSHCN screener was to develop a standardized method for identifying the population of CSHCN for quality assessment and monitoring. Such a screening tool would have to reflect the consensus definition of CSHCN while balancing the need for brevity and accuracy.

To meet these requirements, a 5-item tool was developed that takes only about one minute to complete and can be administered by a parent, interviewer, or by an older child independently. The screener uses the following five consequence "triggers" to identify CSHCN:

  • Limited or prevented ability to function.
  • Need for or use of prescription medication.
  • Need for or use of specialized therapies.
  • Above routine use of medical care, mental health, or other health services.
  • Counseling or treatment for ongoing emotional, behavioral, or developmental problems.

These consequences would have to be due to a medical, behavioral, or other health condition that has lasted or is expected to last for at least 12 months.

Since its development, this screener has been tested and used extensively. In a national sample, it identified approximately 16 percent of children as having special health care needs; among Medicaid managed care enrollees, 20 to 24 percent of children were identified using this screener.

Comparative Results

An alternative to a survey screener is to identify CSHCN using administrative data that are readily available to health plans and State programs. This method relies on information found in claims and encounter data and enrollment files.

Various approaches have been taken to identifying CSHCN via administrative records. Children may be identified based on the cost of their care, their diagnoses, or their use of prescription drugs; software packages may be used to classify children into Clinical Risk Groups (CRGs). CRGs use diagnostic, procedure, and location of care information found in claims and encounter data to classify children into one of nine categories to predict the amount and nature of health care services a child will use in the future. These various methods have been compared in a number of settings:

  • The Florida Title XXI Program used CRGs to identify CSHCN, and administered the CSHCN Screener on a sample of children who were not identified using the administrative approach. This study found that 18 percent of children not identified by CRGs alone were identified by the CSHCN screener.
  • In a pilot program in one Texas county, the survey method, using modified a version of the CSHCN screener, was only used to identify CSHCN. This information was later evaluated to show how many children were identified to have special needs, what their characteristics were, and what types of needs were not identified using this survey-based method alone. This study found that 24 percent of children who were not identified as having special needs through the survey alone were identified as CSHCN according to CRGs.

These two studies show that each of the methods may miss certain children. Administrative data may not include complete or correct diagnoses, and may miss well-controlled conditions for which no significant diagnosis is recorded. Survey methods may face language and cultural barriers, and families may be reluctant to describe their children's health status accurately for fear of losing benefits. Therefore, both survey-based and administrative methods have advantages and disadvantages, and the use of more than one strategy is important.

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