A gap in the data: Defining, identifying, and tracking children with medical complexity in the child welfare system

Background: Among nearly 400,000 children in US foster care, an estimated 10 % are medically complex. Yet, population-level data about children with medical complexity (CMC) served by the child welfare system, both for prevention and foster care services, are largely unavailable. Objective: To understand how US child welfare agencies define, identify, and track CMC. Participants and setting: Child welfare agencies across the US. Methods: Agencies were recruited to complete a survey as part of a larger study exploring how CMC are served by the child welfare system. Survey responses related to defining, identifying, and tracking CMC were included in analysis. Descriptive statistical analysis was conducted with Stata. Qualitative content and thematic analysis were applied to free text responses. Results: Surveys were completed by agencies from 28 states and 2 major cities. Nearly half of the agencies did not have a clear definition to identify CMC; those that did have a definition often lacked standardization. The majority of agencies could not easily identify CMC or access CMC-related data within data systems. Agencies described lack of a clear definition as a barrier to collecting population level data. Conclusions: Many US child welfare agencies lack a clear definition to identify and track CMC, impacting 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 child welfare data systems. Once CMC are identifiable, future research can collect population-level data and provide recommendations for best practices and policies.