Emerging Practice

Parents as Collaborative Leaders: Improving Outcomes for Children with Disabilities


State/Jurisdiction: North Carolina
Setting: Community
Population: CYSHCN Families & Caregivers
Topic Area: Safe and Connected Communities Family & Youth Engagement
NPMs: NPM 11: Medical Home

Parents as Collaborative Leaders: Improving Outcomes for Children with Disabilities is an initiative developed by the Whole Child Health Section within the NC Division of Child and Family Wellbeing. The practice focuses on building the capacity of parents and direct caregivers to become leaders that advocate for systems change and positive outcomes for children and youth with special healthcare needs (CYSHCN). The Parents as Collaborative Leaders curriculum is a nationally recognized, research-based curriculum. It was initially developed in 2008 by the University of Vermont and the PACER (Parent Advocacy Coalition for Educational Rights) Center. Since 2015, the Whole Child Health Section has presented training to over 1770 parents and caregivers of CYSHCN to develop advocacy skills and promote family-professional partnerships. The overall goal of the Parents as Collaborative Leaders (PACL) peer to peer training initiative is to improve the system of care for CYSHCN by building the leadership skills of their parents/caregivers. The Whole Child Health Section employs a full-time Family Liaison Specialist who oversees this initiative. She works to identify and engage parents and caregivers of CYSHCN to become trained facilitators. Upon completion of a Train the Trainer workshop, the facilitators deliver training to local communities across the state and receive stipends for their work. Ten training modules were developed using materials provided by the PACER Center. These training modules are selectable to fit the group’s needs and available in English and Spanish at no cost to parents and caregivers. The Family Liaison Specialist promotes parent leadership training to parent leader groups and schedules training upon request.


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