O4308: A Gap in the Data: Defining, Identifying, and Tracking Children with Medical Complexity in the Child Welfare System

Background: An estimated 10% of the nearly 400,000 children in the US foster care system are considered medically complex. Yet, population-level data about children with medical complexity (CMC) served by the child welfare system is largely unavailable. The objective of our study was to understand how US child welfare agencies define, identify, and track CMC.

Methods: US child welfare agencies were recruited to complete a survey via Qualtrics as part of a larger study exploring how agencies care for and support CMC and their families. Surveys were disseminated to key contacts at 38 child welfare agencies. Survey responses related to defining, identifying, and tracking CMC were included in this data analysis. Descriptive statistical analysis was conducted using Stata software, version 17.1 (StataCorp). Qualitative content analysis and thematic analysis was applied to free text responses.

Results: Surveys were completed by 30/38 agencies (response rate 79%) between August and November 2022. Agencies represented 28 states and 2 major cities, including nearly all major US geographic regions and a mix of state and county administered agencies. Nearly half of the agencies did not have a clear definition to identify a child as being medically complex (Table 1). Nearly one-quarter of agencies did not have any definition. Among the agencies that had a definition, the specific approach or criteria varied greatly by agency (Table 2).

Most agencies could not easily identify CMC or access CMC-related data (e.g., number of CMC in agency) within their data systems (Table 1). The majority reported that their data information systems did not have a field to indicate medical complexity (Table 1); among those that did, some expressed concern that the field was either not filled in due to not being required or was inaccurate. Most agencies reported that caseworkers lack training in identifying CMC and some contract out to medical professionals (e.g., nurses) to help determine medical complexity and support case management. The frequency of reevaluations for CMC status varied widely between agencies and information was not always kept up to date in data systems. Table 2 includes themes and illustrative quotations related to defining and identifying CMC. Agencies describe how the lack of a clear definition is a barrier to collecting population level data (Table 2).

Conclusion: Many US child welfare agencies lack a clear, uniform definition to identify and track CMC, which impacts the ability to tailor care and service delivery to meet their unique needs. To address this, a clear definition for CMC should be developed and consistently applied within agencies and child welfare data systems across the US. Once CMC are identifiable, then future research can be done to collect population-level data for CMC and provide recommendations for best practices and policies.