Training Lay Trainers

Empowering parents of children and youth with special health care needs to teach care coordination skills to other families

Full Project Name:Training Lay Trainers: A strategy to disseminate care coordination skills to families of CYSHCNPrimary Community Organization:Wisconsin Department of Health ServicesPrimary Academic Partner:John Gordon, MD, PediatricsAward Amount:$200,000
Award Date
January2012
Project Duration:30 months

Project Description Narrative:


In Wisconsin, approximately 198,000 children, or 15.8% of those under age 18, are children and youth with special health care needs (CYSHCN). These children, which account for appoximately 40% of all pediatric medical costs, have a higher risk of hospitalizations, fragmented care, and medical errors that can contribute to duplicative and inadequate health care, patient and family stress, decreased safety and increased cost. Because CYSHCN require myriad medical and community services that are often funded by multiple private and public sources, caregivers (most often families) must learn to navigate a maze of health care services. However, these caregivers have little opportunity to learn the skills and behaviors needed to identify and access necessary resources and coordinate their children's care.

Through this award, project partners aim to train a cadre of lay trainers, who are themselves parents of CYSHCN, to teach care coordination skills and behaviors to other families of CYSHCN.

Community partners:
University of Wisconsin-Milwaukee School of Education, Children's Hospital of Wisconsin Special Needs Program

Outcomes & Lessons Learned:


• Created training manual for teaching "Bridge to Independence" curriculum that included handouts, presentations, and scripts for partners to use in teaching the lay trainers in both English and Spanish

• Successfully completed training of lay trainers, identifying that family caregivers can effectively teach other family caregivers while identifying and evaluating barriers that may inhibit future success

“•” Presented project results at various conferences to share lessons learned, including conducting a four-hour symposium on developing curricula for families of children and youth with special health care needs at the American Academy of Cerebral Palsy and Developmental Medicine conference

“•” Leveraged $90,766 in funding from other sources

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