By Angela Lindig, Executive Director, Idaho Parents Unlimited (IPUL), Family to Family Health Information Center

This project helps families of youth with special health care needs (YSHCN) by providing structured tools to guide the transition from pediatric to adult health care. Many families struggle with understanding the process, navigating insurance changes, and ensuring continuity of care. Throughout the project, engagement with families was a primary focus, ensuring families had the knowledge and tools necessary to navigate this transition. Families were introduced to readiness assessments and medical summaries, which then helped them document important health information and plan for future care needs.

One of the participating families found the Got Transition readiness assessments and medical summaries extremely useful. The parent reported that before engaging with the project, they were overwhelmed by the health care transition process and did not know where to start. After using the project tools, they felt more informed and prepared to navigate their child’s transition to adult health care. This approach helped them understand key steps, such as supported decision-making, communication with providers, and self-advocacy for their child. This family’s health care provider also engaged in this process and explained that the transition was much easier than they had anticipated. This provider also said they wanted to integrate Got Transition into their health care practice and offer it to other families who were close to the transition to adulthood age.

Engaging Health Care Providers: Discovering a Knowledge, Resource, and Awareness Gap

In addition to providing direct family support, the project sought to collaborate with health care providers by helping them integrate transition tools and best practices, including readiness assessments and medical summaries, into their practices. Although families responded positively to the Got Transition program and found the resources valuable, engaging providers proved to be a significant challenge. Many health care professionals were hesitant to participate, citing the lack of time, resources, or awareness of the need to prioritize transition planning. In fact, many health care providers believed their care coordinators were already addressing transition planning. These realities underscore the urgent need for more provider education and systemic support for transition planning in health care settings.

Origins of this Initiative

Originally, the plan was to integrate this initiative into the St. Luke’s hospital system and have care coordinators play a key role in leading the work. However, when that partnership did not materialize, the Idaho MCH program pivoted its approach, focusing on its partnership with Idaho Parents Unlimited (IPUL). This strategy allowed the MCH program to directly engage with families rather than rely on provider networks. Outreach strategies were continuously adjusted because Idaho Parents Unlimited was embarking on another statewide transition to adulthood project with many partners in education, employment, and independent living who had not considered the importance of this health care transition.

Progress with Our Partnership with Idaho Parents Unlimited

Despite the challenges, the project successfully provided the participating families with critical transition planning tools, and the lessons learned will continue to inform future efforts in bridging the gap between families and health care providers.

This practice increased the participating families’ knowledge and confidence in navigating the health care transition process. Families who participated reported feeling more prepared, with structured tools such as readiness assessments, medical summaries, and checklists helping them document critical health care information. For the providers who engaged, the process was easier than they had anticipated, and they recognized the value of integrating transition tools into their practice. Another positive outcome for IPUL was that we adapted our training materials to include slides and resources from Got Transition for families, providers, and other professional partners.

IPUL will continue integrating health care transition tools into training materials, including webinars, our Building a Bridge Transition to Adulthood Guidebook, and through self-guided modules. We will continue our efforts to increase provider awareness, especially by educating providers on the importance of structured transition planning. We have begun to collaborate with Medicaid and adult developmental disabilities programs to align transition planning efforts with existing services. In addition, we will collaborate with our partners to explore additional engagement strategies with providers, such as outreach through care coordinators.

Recap of Lessons Learned

• Outreach to direct providers is challenging! We need alternative approaches to accomplish this objective, including greater partner support.
• Families will engage with the initiative if they gain a better understanding of the importance of health care transition earlier and if they know their child’s provider is also knowledgeable about the process and willing to help.
• Participating in the Replication Project provided IPUL with a greater understanding of health care transition challenges in Idaho, particularly the gaps in health care transition support or planning with providers.

Understanding these challenges and gaps in the context of getting support for the overall process of transitioning into adulthood is absolutely critical. For example, families whose children receive special education are given information on post-secondary education, employment, and independent living, but they are not informed about health care transition planning. That is primarily because the Individuals with Disabilities Education Act (IDEA) does not require support for health care transition planning. As such, health care transitions are a critical missing piece of the puzzle. If our youth do not know how to advocate for their health care needs, it will create a domino effect on other areas of their lives that they plan for themselves.

Considering this Replication Project?

For organizations considering this Got Transition opportunity, the Replication Project offers excellent resources and opportunities to implement innovative practices. Organizations and participants gain access to best practices, excellent resources, and national experts, equipping them with proven strategies. Even if (or especially when) absolutely nothing happens according to plan, organizations must find ways to innovate and adapt to create solutions that positively impact the communities they serve.