Impact Stories
Family-Led Academic Grand (FLAG) Rounds: Family stories as a tool for teaching patient and family-centered care to medical trainees
Family-Led Academic Grand (FLAG) Rounds is a national, quarterly educational sessions done in collaboration between the University Center for Excellence in Developmental Disabilities (UCEDD) at the Waisman Center, the Department of Pediatrics at UW–Madison, and the Bluebird Way Foundation. FLAG Rounds were developed by Coleman and Danielle Gerber to use family faculty, or family members of children with complex medical needs as lecturers, and storytelling as a strategy to develop the knowledge, skills, and attitude in medical students and providers to dismantle ableism in pediatric care and partner with families in the care of their children. Each round is presented by 2-3 different family faculty, starting with their stories, and ending with their lessons.
Family faculty and storytelling are key parts of FLAG Rounds. “Having family faculty lead grand rounds sort of turns grand rounds on its head a bit in terms of what the usual expectation is and that’s very unique,” says Heidi Kloster, MD, associate professor in the Department of Pediatrics and FLAG Rounds advisor. Medical grand rounds are a formal method of medical education in the form of meetings in which healthcare professionals discuss and learn about clinical information. In FLAG Rounds, family members of children with medical complexity are the experts. “The heart of FLAG Rounds is using family stories,” Coleman says. They wanted to use an already established system and flip it a bit to expand the role of families in medical education.
Connecting Families: Waisman network helps families with special needs through peer support
Caring for someone with a disability is not a singular experience. It differs widely across families with different disabilities experiencing their own joys and challenges. Creating spaces where families of individuals with disabilities can come together and share their experiences can be an important comfort and support while navigating life. But because caring for someone with a disability can be such a varied experience, existing peer-to-peer support groups may not be focused enough to help families feel at home. The Waisman Center decided to build something that could help fill in those gaps – the Connecting Families network.
Connecting Families is a network of peer support in the Waisman Center’s University Center for Excellence in Developmental Disabilities (UCEDD) for families of children with special healthcare needs. What makes Connecting Families unique is that it nurtures the development of peer support approaches that address unmet needs in the community and that are designed by individuals with lived experience in that area. Each group within the Connecting Families network was designed specifically to address areas of unmet need and create spaces for more specialized support groups that address communities of people with specific experiences.
The rippling effect of sharing knowledge: How Project ECHO is helping create better access to resources and supports for individuals with disabilities
Accessing services, resources, and knowledgeable physicians can be a challenge for the disability community. It is often the case that the resources and information needed to properly care for individuals with disabilities is not widespread, leaving many families lacking access or needing to travel far distances. Finding ways to break down barriers and improve access is crucial to ensuring that everyone has a way to get the care and support they need. This is where Project ECHO comes into play.
In 2018, the Waisman Center decided to bring in the ECHO model to help break down barriers to specialized care and therapies related to intellectual and developmental disabilities, increase access to information and resources, and build capacity in healthcare providers across Wisconsin to care for individuals with disabilities. “The potential for ECHO is just so wide. There are effects that we probably aren’t even aware we are having,” Theresa Cassel, MOTR/L, ATP, occupational therapist and assistive technology professional in the Communication Aids and Systems Clinic at the Waisman Center says. “ECHO is helping a lot with changing the narrative around disability.”
Wisconsin LEND trainees visit state legislators to share their personal stories and educate about the impact of Medicaid on Wisconsinites with disabilities
Every year for the last 13 years, self-advocate trainees from the Wisconsin Leadership Education in Neurodevelopmental and Related Disabilities (WI LEND) Program meet with legislators from their district to share their stories on issues that matter to them during Disability Advocacy Day. This year it was Medicaid.
WI LEND self-advocate trainees shared personal stories demonstrating how Medicaid supports independence, mobility, and essential care, highlighting the impact these services have on their lives.
More than 1 million individuals in Wisconsin use Medicaid and Medicaid-funded programs such as BadgerCare Plus, Family Care, IRIS (Include, Respect, I Self-Direct), Katie Beckett, Family Care Partnership, PACE (Program of All-Inclusive Care for the Elderly), and the Children’s Long-Term Support (CLTS) Waiver Program. During the meeting with legislators, self-advocates shared how cuts to the program would be detrimental to their health, well-being, and independence.
Leading the Way: WI LEND trains the next generation of clinicians and advocates
Daniel Deuel was a Wisconsin Leadership Education in Neurodevelopmental and related Disabilities Program (WI LEND) trainee at the Waisman Center from 2020-2021. While the pandemic changed the way LEND delivered its training, it was no less impactful for Deuel. His experience with LEND reinforced the importance of interdisciplinary clinical approaches and provided him with the necessary skills to be a leader in his field serving individuals with disabilities.
“LEND trainees, including graduate students, self-advocates, and families, learn to explore perspectives in disability they might not otherwise experience. Starting with core knowledge of disabilities and how they are identified, trainees go on to learn about best practices for supporting families and then supporting individuals in their development to achieve optimal outcomes,” says Anne Harris, PhD, MPH, RD, [former] director of the WI LEND Program. “Learning from those with lived experience helps LEND trainees determine how to make positive change in the systems and experiences of individuals with disabilities.”
New method of assessing LEND’s effectiveness evaluates five-year outcome of trainees
A new longitudinal research study aimed to better measure the effectiveness of LEND training. A multi-LEND study team, led by Lauren Bishop, PhD, an assistant professor of social work at the University of Wisconsin–Madison and a Waisman Center investigator, adapted a methodology developed by senior author Robert Noll, PhD, Professor Emeritus of Psychiatry at the University of Pittsburgh. The results, published recently in the Maternal and Child Health Journal, showed that LEND trainees reported greater achievement in leadership activities over time and were more likely to work with maternal and child health (MCH) populations, work with other disciplines, and work with underserved or vulnerable populations in comparison to peers that did not receive LEND training.
Both the trainee and their comparison peer completed the NIRS Graduate Survey every year for five years. Results showed positive effects of LEND training each year and at five years post-training. LEND trainees were more likely than comparison peers to report working with MCH populations, other disciplines, underserved or vulnerable populations, and in a public health agency or organization.