March 2024Vol. 25, No. 2Engaging Lived Experience to Strengthen Comprehensive Child Welfare Information Systems
Written by Children's Bureau Division of State Systems staff
The regulations that describe a Comprehensive Child Welfare Information System (CCWIS) at 45 CFR §1355.50-59 are intended to support title IV-E agency efforts to improve outcomes across the spectrum of child welfare services. The effectiveness of a CCWIS depends on the agency’s understanding of ever-evolving program and user requirements, along with the diverse needs and perspectives of those individuals, families, and communities served by child welfare and related organizations.
With the flexibility afforded to title IV-E agencies building a CCWIS, agencies can broaden their historical definitions of system users and expand the makeup of project governance to ensure they are being inclusive of populations historically marginalized by child welfare systems.
One such population is youth and young adults with lived experience in foster care, a group that agencies sometimes overlook, as revealed during our Technical Assistance Monitoring Reviews of CCWIS projects. We strongly encourage agencies to consider this population a key partner through all phases of a CCWIS project. Involving youth and young adults with lived experience is necessary for two primary reasons.
First, access to data in a CCWIS provides youth and young adults a gateway to crucial information and documents amassed during their time in foster care. It can also support efforts to enhance data accuracy, help with effective communication, encourage information sharing, offer a platform for soliciting input, and streamline data collection.
The significance of this access extends beyond mere convenience. For youth and young adults, access to case records is instrumental in various facets of their lives, including their efforts to pursue employment, enroll in higher education or military service, search for a place to live, obtain a driver’s license, address medical and service needs, and maintain vital connections with siblings and other family members.
EXAMPLE: A young adult cannot submit accurate information for a military security clearance because they cannot access placement and school records without setting an appointment with the title IV-E agency and physically visiting the office, which is several states away.
The opportunity for a young person to easily retrieve their case information signifies more than just access—it represents empowerment. With active participation in their case, they can stay connected, establish direct communication channels with their case team, and take charge of their electronic records by both accessing and updating them as needed.
Second, youth and young adults with lived experience in foster care want to know how their information in a CCWIS is being used, and they are the best resource to ensure they are represented honestly and accurately. A title IV-E agency may not naturally consider potential use cases or adequately mitigate risks if the agency does not include the input of a person with lived experience.
EXAMPLE: A data exchange between child welfare and education is needed to ensure the educational needs of children in foster care are being met. However, some of the information exchanged is extremely sensitive, and youth in foster care may not realize the information is ultimately shared with schools. Without the involvement of lived-experience experts, safeguards for this information were overlooked, which led to student workers at a high school having access to a peer’s information in the school record, causing embarrassment and loss of normalcy.
For more information on this subject, several use cases, and two case studies, refer to the Children’s Bureau’s Engaging Youth in Information System Design Toolkit.
Additional Resources
"Engaging Lived Experience to Strengthen CCWIS": This webinar reinforces the idea that technology innovations can have real-world impacts on youth in care and provides guidance on how to engage lived experience throughout a CCWIS project.
IM-24-01: Equitable Contracting and Procurement: This Information Memorandum provides agencies with information on contracting and procurement practices that promote the increased participation of small businesses owned by members of disadvantaged, underserved, and marginalized communities in solicitations to develop a CCWIS.
