Case Study 3: Family & Youth Partnership: Building Person-Centered Care

State Profile: This Midwestern state has a large population. Hispanic/Latino populations are the fastest growing demographic, especially amongst children. Approximately one-fifth of this state’s population are children, and an estimated 13%–15% of children and youth are identified as having special health care needs. Nearly all CYSHCN are insured, with public insurance ~45% and private insurance ~55%.

Refer to the full implementation guide for details.

Summary

This initiative transformed advisory structures for families and youth served by CYSHCN programs into true partnerships, embedding person-centered care across programs. It replaced a top-down Family Council with family-led advisors that influence operations, policy, and system-level change.

Exploration (2018, 6–12 months)

• Sparked by a shift to person-centered planning in Medicaid home care waivers and internal reflection at agency of how to apply person-centered care across all programs
• Identified shortcomings of existing Family Council (eg, low attendance, top-down)
• Benchmarking: reviewed models from Title V programs, hospitals, advocacy groups, and waiver agencies
• Goal: build a structure for authentic partnership, compensation, and family-led projects

Installation (2019, 6–18 months)  

• Formed internal workgroup of 12 (including family leaders) to integrate community input across the state and different agencies
  • Developed guidebooks, recruitment materials, leadership communications, and online portals
• Created infrastructure for participation and compensation: secured board approval for paid family roles; partnered with university to streamline payment processes

Initial Implementation (2021–2022)  

• Launched new Family Advisory Council model 
  • Paid family leaders and members
  • Opened meetings for public participation and closed meetings for core council
  • Quarterly meetings with agendas were co-developed by family leaders
• Introduced feedback loops and workgroups for targeted discussions
• Accounted for in geographic distribution, language, and programmatic expertise
• Evaluated success through qualitative feedback and engagement metrics

Full Implementation  

• Expanded participation: 45+ attendees at recent open meetings
• Added Spanish-language support and real-time translation
• Family leaders now develop agendas, lead subcommittees, and train staff
• Created paid outreach-coordinator role for a parent leader
• Sustained through Title V funding, embedded in annual budget
• Projects: caregiver mental health toolkit, transportation policy recommendations, Medicaid waiver improvements (eg, generator coverage), and family-led training for staff

Impact

This initiative significantly strengthened family and youth engagement by moving from a top-down advisory model to a person-centered model that changed interactions with families. It created compensated leadership roles for families and established feedback loops that show how family input drives program and policy changes. These efforts have expanded participation, improved trust, and embedded person-centered care across multiple programs.