A critical examination of Illinois' child welfare information systems and its utility for identifying and monitoring children and youth with special health care needs for front- and back-end users

Background: Children and youth with special health care needs (CYSHCN) are at an increased risk for abuse and neglect, and they experience worse outcomes during and after child protective services involvement, as compared to typically developing peers. Identifying and monitoring these vulnerable youth is essential for reducing disparities and optimizing service delivery. However, many states, including Illinois, lack systems for efficient identification and monitoring.

Objective: (1) To examine existing Illinois Department of Children and Family Services (ILDCFS) data systems to determine if a source exists that would allow for identification and monitoring of CYSHCN; and (2) To understand ILDCFS personnel's experience with identifying and monitoring CYSHCN.

Methods: First, relevant ILDCFS data sources were identified, pulled, and examined for completeness. Second, ILDCFS personnel completed a mixed-methods survey assessing how they identified and monitored CYSHCN as well as what barriers they experienced in conducting these activities. Conceptual content analysis was utilized to obtain counts of different methods used to track and monitor youth as well as to identify barriers to these processes.

Results: Six data sources were identified as being relevant through ILDCFS' data systems, but none were complete enough for effectively tracking and identifying CYSHCN. Survey responses indicated no standardized, systemic process for identifying and monitoring CYSHCN, with many personnel relying on reports from other involved parties.

Conclusions: In order to identify CYSHCN and monitor well-being, a standardized process within ILDCFS systems is needed to provide complete, accurate, and timely data for CYSHCN, allowing for both system-wide and individual-level monitoring.