By Emily Leclerc, Waisman Science Writer
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.
“There’s a lot more to life, lived experiences, and working alongside individuals with a variety of neurodevelopmental disorders and the folks who care for them has shown me that,” Deuel says. “I think LEND has enriched my educational and life experience for sure.” Currently Deuel is pursuing a dual degree in physical therapy and public health at UW-Madison. This summer he worked alongside the Navajo Nation in New Mexico to provide physical therapy services that can be notoriously challenging to access.
His LEND experience pushed him to pursue career opportunities he may not have otherwise. “I worked as a home aid for an individual with cerebral palsy. I don’t think that would have been a work experience I would have pursued prior to LEND,” Deuel says. The impact and imparted skills that Deuel took away from his training exemplifies the goal LEND is trying to achieve: train leaders to improve services and supports for children with or at risk for neurodevelopmental disabilities. LEND is an integral part of training at Waisman Center and contributes to the training core function at the University Center for Excellence in Developmental Disabilities (UCEDD) located at Waisman.
“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, 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.”
The program brings students and community members together from 15 different disciplines to participate in seminars, interdisciplinary team-work, clinic or community-based practice, research projects, family mentor experiences, leadership development workshops and mentoring. Trainees learn leadership skills and how to educate legislators on best practices and ways to improve policies and programs for individuals with disabilities. The WI LEND program has trained nearly 3,000 people since it began at Waisman in 1973.
There are now 60 LEND programs across the United States all focused on training the nation’s next leaders capable of improving health and other services for individuals with disabilities. These training programs began in the 1960s with President Kennedy’s push to create better healthcare and services for those with intellectual and developmental disabilities (IDD). Originally called Maternal and Child Health “interdisciplinary training”, the programs were renamed to LEND in 1994. Similarly, in 1994, LEND programs began to involve the family members of individuals with disabilities as trainees in the program.
Starting in 2011, all LEND programs across the country were encouraged to also include “disability advocates” (individuals with a disability) as LEND trainees. WI LEND is now in its’ twelfth year of including one or more disability advocate trainees, which is now a LEND requirement. This way students, family members, and disability advocates have the opportunity to learn from one another in a variety of ways. In a training program designed to empower people to support individuals with disabilities, who better to learn from than the individuals themselves. This inclusion follows the model of “nothing about us without us” which underscores the importance of including individuals with disabilities in guiding decisions that will ultimately impact them.
Many of the disciplines welcomed into LEND are clinically focused in areas which often have significant impact on a person’s life. Examples include specialties such as audiology, genetic counseling, medicine, nursing, occupational therapy, social work and physical therapy. LEND provides the training that promotes interdisciplinary communication and thought processes across these disciplines. Individuals with disabilities often receive care from multiple specialists and LEND trains those specialists to work together across disciplines to provide holistic high-quality care. Deuel took much away from this aspect of LEND.
“I have a particular interest in working with lots of different patient populations. LEND provided the leadership development I was after as well as exposure to physical therapy practice within the early intervention setting,” Deuel says. “I was getting experience working alongside a clinician with a lot of insight and members of other practices so that I better understood what holistic, comprehensive, and interdisciplinary care could look like for the betterment of this patient population.”
Kali Kramolis, MD, MPH, a third-year pediatrics resident at the University of Chicago Comer Children’s Hospital, was a part of WI LEND from 2018 to 2019. Ever since medical school, Kramolis wanted to go into developmental behavioral pediatrics (DBP) – which is a field that specializes in caring for people with disabilities. “I was already planning to go into DBP, but LEND made me even more excited to. I felt surrounded by ‘my people’,” Kramolis says.
Kramolis’ experience as a public health trainee in LEND highlights one of the important aspects of LEND training – the development of the necessary skills to use evidence to inform policy changes which support individuals with disabilities. “What I remember learning most about was policy for people with disabilities in Wisconsin, advocacy-related tools, how to communicate with legislators, and the necessity of including folks with disabilities in policy making and education efforts,” Kramolis says. When making policy decisions for disability care and supports it is crucial to include individuals with disabilities in those discussions as they will be the ones directly affected.
The WI LEND Program serves an important purpose in training the next generation of clinical and community leaders in Wisconsin who will lead future health care and human services designed to improve the lives of individuals with disabilities and their families. “The world should be inclusive of the needs and respectful of the diversity of talents brought to the foray by all individuals,” Deuel says. LEND is an important part of creating that world.
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