D2 - “Dreaming Differently” about Youth Healthcare Transition

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Full Description: For years, and in past AMCHP workshops, the Wisconsin (WI) Youth Health Transition Initiative (YHTI) has developed and shared training materials for families to help them “Build Your Bridge” from pediatric to adult healthcare. These materials were originally designed for families with children both with, and without, special health care needs. The “Build Your Bridge” curriculum previously delivered in person is now delivered remotely as a 90-minute interactive session. It includes eight “tools” for transition, a workbook, and a template for families to plan at least one action step in their healthcare transition process. Evaluations are consistently very good; however, some families commented that much of the material did not apply to their child who had more complex healthcare, including those with intellectual/developmental disabilities (I/DD) and those requiring guardianship.

Two complex care programs (CCP) at children’s hospitals in WI, working with MCH CYSHCN program leaders, chose to address their patients’ healthcare transition needs through a Collaborative Improvement and Innovation Network (CoIIN) project. The statewide CYSHCN coordinator, who also leads Wisconsin’s approach to address the “Transition” national performance measure for the MCH block grant, connected the state YHTI with the complex care teams. Families whose children were being served in the CCP were interested in learning about healthcare transition planning. However, these stakeholders all recognized that “becoming independent” and taking charge of their own health care was not a realistic option for children with medical complexity. These children experience all of the following: severe chronic conditions, major functional limitations, substantial health service needs and high health services utilization. Many of these children are dependent on medical equipment, have communication challenges, and/or have I/DD. Therefore, not all of the eight “tools for transition” which make up the “Build Your Bridge” approach, are relevant. To better meet their needs, a small group of YHTI staff and families served by the CCP worked together to adapt the materials, deleting some sections and adding more information to others. They decided to call the adapted curriculum “Dreaming Differently.” This new approach has been successfully piloted and is now being offered remotely during the pandemic, which allows for more families whose children have complex needs to participate. In addition, all “Dreaming Differently” sessions include at least one co-presenter who is a parent of a child/young adult with CMC.

Presenter will describe components of the “Dreaming Differently” curriculum, lead a review and discussion of the value of this approach in engaging with families to adapt a curriculum to meet unique needs. They will also discuss the value of training a parent presenter and how to disseminate the curriculum throughout their own state or territory.

Abbreviated Description: Families with children with complex care needs involved in an MCH-supported Complex Care quality improvement project participated in adapting healthcare transition training materials for families to better meet the expectations and unique needs of their children. The resulting “Dreaming Differently” curriculum is being offered, along with a continuum of training and technical assistance resources, to families and professionals in Wisconsin through the state Youth Health Transition Initiative. This workshop will describe the “Dreaming Differently” session and materials, and through discussion, participants will be able to identify how to work with families to build on past success to create opportunities that will assist families in shaping the lives of their children into the future.