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Summer LEND Trainee Project Yields Youth Transition Data and Reinforces Career Path for Trainee

September 7, 2020

During summer 2020, the Wisconsin LEND Program at the Waisman Center, University of Wisconsin-Madison had an exciting opportunity to collaborate with a first-year medical student on a UCEDD project examining the needs and barriers to quality healthcare and healthcare transition for adults with Down syndrome (DS). The project was conducted by Kelly Kuehl, a medical student at the UW-Madison School of Medicine and Public Health (SMPH), as part of the Shapiro Scholarship Program. This program offers medical students an opportunity to explore areas of interest on a project for 40 hours per week for 10 weeks over the summer in collaboration and with matching funds from a partner program. For Kuehl's DS transition project, she partnered with WI LEND and was mentored by Anne Harris, PhD, director of the WI LEND program, and Maria Stanley, MD, medical director of the Waisman Center Clinics.

Kuehl became interested in the field of intellectual and developmental disabilities (IDD) through her experiences working as a caregiver for adults with disabilities while in college. Now in medical school, she pursued a project with the Waisman Center to specifically further her career interest in this field.
The goal of the project was to determine the needs and barriers related to obtaining high quality healthcare and healthcare transition for adults with DS in Wisconsin as perceived by stakeholders within the DS and health care communities. While there are transition services that help to prepare adolescents and young adults with IDD to participate in adult oriented healthcare, many adolescents with DS are not accessing these services in Wisconsin. This can lead to an incomplete transition to adult care and leaves the potential for patients to miss adult screenings and other services not provided by pediatric facilities. The Waisman Center initiated this project - which was a good match for Kuehl's interests - in order to address the needs of youth transition through systems change, interdisciplinary training, community education and technical assistance, research and information dissemination.

While the original plan was to conduct in-person meetings with community members and health professional stakeholders in providing care to adults with Down syndrome, Kuehl transitioned her work to online meetings due to COVID-19. Data collection was a mix of primarily qualitative methods involving conversations with community stakeholders. These mixed-methods included semi-structured interviews, a focus group sponsored by a state Down syndrome association, and two online surveys, one for caregivers and one for healthcare providers. The focus group received limited participation and was analyzed instead as a group interview with one new participant. The results included 19 interviews with healthcare providers, caregivers, and self-advocates. The interviews were recorded and analyzed to develop central themes.
Six themes emerged from the data: the need for disability training for healthcare professionals, the need for educational resources for caregivers, the need for evidence-based guidelines for adults with DS, comments on healthcare transition, barriers to healthcare access, and social determinants of health. The caregiver survey received 21 responses and the healthcare provider survey received 23 responses.

When asked about transition, 18 caregivers agreed that transition is important for the person they care for, but none reported transition services as easy to find and 12 had never tried to access them. In the healthcare professionals survey, 16 providers disagreed that they knew what is needed to transition a young adult with DS from pediatric to adult care.

The findings highlighted the need for more disability training and resources for both healthcare providers and caregivers. For primary care providers, more training is needed on how to provide healthcare transition services for people with DS. Caregivers may need more support and resources so they are aware of the transition options available for the person they care for.

For the Waisman Center, the project outcomes build on previous work and help shape future directions in addressing the needs facing youth with IDD in transition throughout Wisconsin. For Kuehl, it resulted in current and future contributions to the medical field and her career. Her experiences over the summer inspired her to initiate the first leadership team meeting for a newly founded interdisciplinary student American Academy of Developmental Medicine and Dentistry (AAMD) chapter at the University of Wisconsin-Madison in August. She also plans to work with individuals with IDD as a physician, "This project was a wonderful learning experience for me and has deepened my passion for working with people with intellectual disabilities. I am really excited to bring the knowledge, skills, and connections I gained over the summer to the new AADMD student chapter, the rest of my medical school career, and beyond!"