Second Annual Disability Advocacy Coalition in Medicine Interprofessional Virtual Conference

Empowering Patients and Providers as Disability Advocates

Saturday, October 15th 2022

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The Disability Advocacy Coalition in Medicine (DAC Med) is pleased to invite you to their second annual virtual conference taking place Saturday, October 15th 2022 from 10 a.m to 4:30 p.m. CST over Zoom. This event is trainee led and trainee focused.

Through thoughtful sessions, reflective panels, workshops, and collaborative team-based learning activities, we will discuss and learn about how we as graduate health professional students can advocate for patients with disabilities, support our peers with disabilities, and address ableism in medicine and medical education.

Real time captioning and ASL interpretation will be present during all sessions. Additional accommodations available upon request during conference registration.

 

 

Conference Schedule

10:00-10:10 a.m. CST Plenary/ Introduction
10:10-10:50 a.m. CST

Physician-Based Disability Advocacy at a National Level

Presenter: Prakash Jayabalan MD PhD

10:55-11:35 a.m. CST

Home Health Care for Children with Medical Complexity: Caregiver and Provider Perspectives

Co-Presenters: Carolyn Foster MD MSHS, Margaret Storey PhD

11:40-12:20 p.m. CST Lunch Break
12:20-12:50 p.m. CST

Tips for Creating and Delivering Accessible Media and Presentations

Presenter: Sheryl Burgstahler PhD

12:55-1:55 p.m. CST

Research Hour

Rotate through "breakout room" presentations of your choosing and listen to disability related research performed by trainees, residents, and the like as well as various DAC Med chapter initiatives occurring across the nation. Abstracts will be made available prior to the conference.

2:00-2:40 p.m. CST

Disability Rights and Wrongs: Addressing Concerns of People with Disabilities and Their Families in the Health Care System

Presenter: Robert Dinerstein JD

2:45-3:45 p.m. CST

Team-Based Disability Management in Healthcare: Case-Based Learning

Facilitators: TBA

3:50-4:30 p.m. CST

Patient as Advocate: A Panel

Co-presenters: Lisa Rosen MS, Cris Mix OTR/L, Robert Foys PhD, Kenneth Jennings, L. Bradley Schwartz JD
4:30 p.m. CST Closing

Meet our Planning Committee and Learn More about our Speakers

Conference Planning Committee

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Nina Byskosh, MD Candidate at Northwestern Feinberg School of Medicine

Michael Yuyang Chu, MD Candidate at Northwestern Feinberg School of Medicine

Kimberly Collins, MD Candidate at Northwestern Feinberg School of Medicine

Allison Jaffe, MD Candidate at Northwestern Feinberg School of Medicine

Chris Lewis MD, Academic Chief Resident at Shirley Ryan Ability Lab

Jessica Metelski, MD Candidate at Northwestern Feinberg School of Medicine

Samantha Schroth, MD PhD Candidate at Northwestern Feinberg School of Medicine

Our Speakers

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Prakash Jayabalan MD PhD

Dr. Prakash Jayabalan is Physician Scientist Director of the Nancy W. Knowles Strength and Endurance Lab at the Shirley Ryan AbilityLab and Assistant Professor at Northwestern University Feinberg School of Medicine, Chicago, USA. He received his medical degree from King’s College London and PhD from the University of Missouri in Pathobiology. He completed residency training at the University of Pittsburgh (during which he was awarded the Mclean Outstanding Resident Award from the AAP) and subsequently fellowship training in Sports Medicine at Northwestern University. Since graduating fellowship, he has received multiple grants, publications, and research awards for his laboratory’s work including the Best Paper Award from the AAP, multiple research Awards from the Foundation for PM&R, Community Engagement Award from the Alliance for Research in Chicagoland Communities, Young Investigator’s and Collaborative Research Network awards from the AMSSM and recent grants from the RESTORE Center of the NIH and Pepper Center for Geriatric Health. His lab’s work includes using biological markers to develop novel, individualized rehabilitation, and exercise strategies for individuals with knee osteoarthritis and optimizing the exercise of individuals with disabilities. At the Shirley Ryan AbilityLab he has recently been awarded the Medical Education Innovator of the Year Award and the ‘Resident Mentor of The Year’ award from the Northwestern PM&R residency program. In the past 3 years, his mentees have presented over 30 research abstracts at the AAP/ Annual meeting winning 3 Best Paper and Top Poster Awards. He is also the Chair of the Health Care Policy and Legislative Committee of the AAPM&R and is the AAP representative to the AMA.  He is also a steering committee member of the Alliance for Research in Chicagoland Committees. For all his accomplishments recently received the Early Career Academician Award at the AAP Annual meeting in New Orleans in May.

 

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Carolyn Foster MD MSHS

Dr. Carolyn Foster is an Assistant Professor of Pediatrics at Northwestern University Feinberg School of Medicine and an attending physician at Ann & Robert H. Lurie Children’s Hospital of Chicago in Advanced General Pediatrics and Primary Care. She received her undergraduate degree in biological science from Columbia University and medical doctorate from Harvard University. She is a board-certified pediatrician with pediatric and health services research training from the University of Washington’s School of Public Health and Seattle Children’s Hospital, where she spent an additional year as chief resident. As a physician-investigator, she focuses on developing and evaluating health care delivery interventions and health care policies for children with medical complexity and disability that maximize their health outcomes and optimizes their health care utilization within a family context. She is particularly interested in improving the access to and quality of home and community-based health care for children needed for safe, independent, and vibrant lives at home, school, and play. As part of this work, she is co-director of Lurie Children’s Complex Care Program and co-leads evaluation of Lurie Children’s Digital Health programs.

 

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Margaret Storey PhD

Margaret Storey is the parent of a daughter with Aicardi Syndrome, a rare condition that causes intractable seizures and disabilities.  In that capacity, she had advocated for children with medical complexity and disabilities in opinion pieces about medical marijuana, special education, disability rights, and Sudden Unexpected Death in Epilepsy for The Guardian online, the Motherlode Blog at The New York Times, The Chicago Tribune, and CNN Online. She serves on the Parent Advisory Council at the Ann and Robert H. Lurie Children’s Hospital of Chicago and on the Board of Directors of the Danny Did Foundation. She is also Professor of History and Associate Dean of the College of Liberal Arts and Social Sciences at DePaul University.

 

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Sheryl Burgstahler PhD

Dr. Sheryl Burgstahler founded and directs Accessible Technology Services—which includes the DO-IT (Disabilities, Opportunities, Internetworking, and Technology) Center and the IT Accessibility Technology (ITAT) Team—at the University of Washington (UW). These dynamic groups promote (1) the development of self determination skills, use of mainstream and assistive technology, and other interventions to support the success of students with disabilities in postsecondary education and careers and (2) the universal design (UD) of learning opportunities; facilities; websites, media, documents and other IT; and services to ensure that they are accessible to, usable by, and inclusive of individuals with disabilities. ITAT focuses its efforts at the University of Washington; the DO-IT Center reaches national and international audiences with the support of federal, state, corporate, foundation, and private funds. Dr. Burgstahler is also an affiliate professor in the UW College of Education and Disability Studies program at the UW and in the Disability Studies and Services programs at City University of New York, where she teaches online. Much of her teaching and research focus on the successful transition of students with disabilities to postsecondary studies and careers and on the application of UD to technology, teaching and learning activities, physical spaces, and student services; the incorporation of UD topics in mainstream curriculum; and the adoption of a UD Framework to inform all practices in higher education within an Inclusive Campus Model.

 

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Robert Dinerstein JD

Robert Dinerstein is professor of law and director of the Disability Rights Law Clinic at American University Washington College of Law (AUWCL), where he has taught since 1983. He specializes in the fields of clinical legal education and disability law, especially mental disabilities law (including issues of consent/choice, capacity and alternatives to guardianship) and the Americans with Disabilities Act. In addition to the Disability Rights Law Clinic, which he founded (and which handles special education, supported decision making, advance mental health directives, Titles I-III of the ADA, and other cases), he teaches courses or seminars on law and disability rights. He has written numerous articles and presented extensively on disability rights issues. Among his awards, Dinerstein has been named a Fellow of the American Association on Intellectual and Developmental Disabilities (2016) and received the Paul G. Hearne Award for Disability Rights (ABA, 2013).  He has an A.B. degree from Cornell University (magna cum laude in history) and a J.D. degree from Yale Law School.

 

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Lisa Rosen MS

Lisa Rosen has 30 years of experience in physical rehabilitation with expertise in education, training, and program development. Most recent professional experience as Manager of the Shirley Ryan AbilityLab’s LIFE Center (formerly known as the Rehabilitation Institute of Chicago), a multimedia education center and web portal for people with physical disabilities, their families, health professionals, and the community. Responsible for supervising Education Program Managers who provide education programs, classes, support groups and special events. Direct content management for globally accessed education and training materials. Led and designed a variety of innovative disability awareness programs for patient, staff and medical education, research, customer service and knowledge management. In addition, co-founded the Rehabilitation Institute of Chicago/Shirley Ryan AbilityLab peer mentor program to enhance education and the patient experience, which integrates former patients into clinical teaching across all

 

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Cris Mix OTR/L

Cris Mix brings 35 years of experience as an occupational therapist. She specializes in pediatrics, physical rehabilitation, spinal cord injury, brain injury, and family education. Cris coordinates the Peer Mentor program for patients and families across the Shirley Ryan AbilityLab system of care. In addition, she collects and analyzes peer program data and provides expert consultation on incorporating peer visitors into Shirley Ryan AbilityLab patient / family education and research initiatives.

 

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Robert Foys PhD

Robert Foys retired from Aon Corporation in 2005 where he was the Global Practice Leader for Aon's affinity insurance business and Senior Executive Vice President of Aon's US commercial insurance brokerage segment. Prior to joining Aon, he had received a PhD in English Language & Literature from the University of Illinois (Urbana) and taught there and at the University of Wisconsin (Madison). In 2010 at age 70 he was diagnosed with end stage congestive heart failure. A left ventricle assist device (LVAD) was implanted as a then relatively novel destination therapy, instead of a bridge to a heart transplant, in February, 2011. He has been a peer mentor to rehabilitating LVAD patients at Shirley Ryan Ability Lab.


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Kenneth Jennings

Kenneth Jennings was paralyzed 33 years ago while playing high school football, God turned a tragedy into a blessing. Kenneth Jennings is the CEO of Gridiron Alliance a non-profit organization, a peer-mentor at LIFE Center at Shirley Ryan AbilityLab, a football coach, an advocate, motivational speaker, poet, he does 2 podcasts, he work for a California company named Neuralink, on the board of Bright Promises Foundation and lastly soon to be author of his own book titled How 8 Seconds Change My Life. He's the father of a 27 year old daughter and a 3 year old grandson. He lives by his on motto Blessed To Be Able.

 

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L. Bradley Schwartz JD

L. Bradley Schwartz is the president and founder of Greater National Advocates, a nonprofit public awareness foundation and directory for the profession of Independent Patient Advocacy. He is an attorney who lost his limbs after communication breakdowns in a hospital ER resulted in a failure to recognize the clear warning signs of sepsis. It became Brad’s personal mission to make sure every patient’s voice is heard, because in his case, it wasn’t. His personal medical malpractice survival story led to the formation of Greater National Advocates. GNANOW.org is a leading national online directory of Independent Patient Advocates. The goal of GNA is to quickly connect patients and families with Independent Patient Advocates and to promote the profession as a necessary and welcome component of modern patient care.

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