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What's Next? Transitions to Adulthood for Medically Complex Youth

**Presented at the 2022 CMSA Annual Conference**
*** RN, CCM and SW credits ***
As youth with medical complexity near milestone birthdays (18 and 21), major changes occur relative to healthcare and status in the community. Over the past five years, The Coordinating Center has focused on creating a clear transition process for these youth and caregivers. The Center’s approach to transitioning youth is a result of partnering with Got Transition and the Maryland Governor’s Transitioning Youth Initiative. While this process emphasizes the importance of healthcare transition, it also includes transition supports related to education, legal, residential and finances. The COVID-19 pandemic elevated the importance for transitioning youth services and effective care coordination services, as typical meetings held in schools and provider offices came to a halt. Youth and caregiver experienced increased frustration and fear surrounding transitions.

The Center was poised to ensure they received the needed guidance and assistance. To better meet identified needs, an assessment tool was streamlined, and virtual platforms were utilized to connect. Additionally, the transition process was started earlier, beginning at age 14, to ensure a collaborative effort for several years leading up to the formal transition. Of primary importance in transitions is engaging the youth and empowering them to make their own decisions. When this is not possible, The Center works to ensure the family/caregiver is engaged. The Center created tools including an introductory letter to youth/caregivers and primary care providers, an annual assessment, documentation criteria, a list of adult providers, sample care plan goals, tip sheets related to the process, and a toolbox of community resources. Essential to The Center’s process was locating providers who were ready and willing to work with adults with disabilities. While The Center works primarily with individuals with complex medical needs, the tools and processes shared can be used for all youth.

Objectives:

  • Recognize the differences between pediatric and adult healthcare and when the transitioning youth process should begin.
  • Identify other components of the transitioning youth process, in addition to health care.
  • Integrate a transitioning youth assessment into your current practice.