KU researchers present model to recruit and compensate 'lived experts' for systems change; panel asked to help recruit parent representatives

Kayla Byers, associate director at the University of Kansas Center for Public Partnerships and Research, presented a model for engaging lived experts (individuals with direct personal experience of systems) in systems‑change work. Byers defined lived experts broadly — parents and caregivers with experience in child welfare, early childhood services, developmental needs and mental health — and said the model emphasizes co‑creation rather than token consultation.

The model’s five core components are: cohort structure (engage multiple lived experts so voices are not tokenized); mechanisms of accountability (charters, anticipatory design, feedback loops); equity‑based compensation (stipends or wages at fair‑market rates plus support for transportation, childcare and technology and attention to tax/benefit implications); shared and conferred power (co‑decision making and instances of formally delegating decision authority); and low‑barrier entry (flexible opportunities that avoid litmus tests of readiness).

Byers cited examples from Kansas implementation: the Family First Family Council worked with DCF to draft recommendations for the statewide prevention plan and had the opportunity to submit formal policy recommendations through an established form and policy review process. She said lived‑expert input shaped service sequencing in Southeast Kansas through community sense‑making, and that a stipend model is planned for parent representatives who will be eligible if they have a child currently receiving services.

Lindsay (staff member) and Byers asked panel members to assist in recruitment for the lived‑expert cohort opening soon and explained the stipend will cover meeting attendance and childcare expenses. Byers offered to share guidance documents and contact information for follow up.