Health Equity for Transition Age Youth ECHOÂŽ
Target Audience:
Pediatricians, Physicians, Nurses, Social Workers and families
Every Wednesday:
March 6, 2024 – April 10, 2024
12:00 pm – 1:00 pm CST
View Recorded Sessions
ECHO Resources
View Participant Guide
For more information, contact Krista Opstedal
krista.opstedal@minotstateu.edu
Transitioning from pediatric to adult health care presents significant challenges for children with special health care needs (CSHCN) and transition-age youth with disabilities. This process often leads to gaps in care, resulting in adverse health outcomes and frustration for both patients and their families.
Barriers to Health Care Transition (HCT) include:
- Feelings of inadequacy in caring for certain disability conditions among health care providers.
- Inadequate planning and support during the transition process from pediatric to adult health care.
- Lack of communication, care coordination, guidelines, and protocols between pediatric and adult health care systems.
Our training series aims to equip pediatric and adult healthcare professionals with strategies to ensure a successful healthcare transition for this underserved population. Participants will gain expertise in providing care for patients with disabilities and special healthcare needs, learn how the Social Model of Disability can aid in identifying and addressing ableism within healthcare settings, and strategies to support a successful transition from pediatric to adult healthcare.
Key Focus Areas:
- Equipping participants with the necessary skills and knowledge to care for patients with disabilities and special health care needs.
- Identifying and addressing ableism in health care settings.
- Strategies to support successful health care transition for children with special health care needs and disabilities.
In this series, participants will:
- Learn best practices from industry leaders
- Collaborate and share resources/strategies as a community of practice
- Join sessions online via Zoom
- Earn free continuing education credits
There is no cost to participants
What is ECHOÂŽ: Extension for Community Healthcare Outcomes (ECHO)Â is an interprofessional practice network where education and/or healthcare professionals learn together. Short didactic lectures and case presentations are conducted during recurring video conferences. Participants learn best practices to support the individuals they serve by implementing real-time solutions, improving systems, and removing barriers to care
Target Audience:Â Pediatricians, Physicians, Nurses, Social Workers and families
Every Wednesday: March 6, 2024 – April 10, 2024
 12:00 pm – 1:00 pm CST
| Session Title | Date |
| Session 1: Structurally Competent Healthcare for People with Disability The Medical Model of Disability is deeply ingrained in modern society and significantly impacts children with special health care needs and individuals with disabilities across various aspects within the social determinants of health. The Medical Model perceives disabilities as stemming from an individual's physical or mental limitations that require âfixingâ. This session will explore principles of the Social Model of Disability, including the environmental, social, and attitudinal barriers, that impact patient care and overall inclusivity in society. Session Objectives: ⢠Differentiate between the Medical Model and Social Model of Disability. ⢠Discuss the societal perceptions of individuals with disabilities. ⢠Illustrate how the Social Model of Disability can aid in quality health care for people with disabilities. ⢠Describe health advocacy and the importance of multi-level advocacy approaches to assess and understand the social determinates of health in a health care setting. Speaker: Beth Marks, PhD, RN, FAAN and Jasmina Sisirak, PhD, MPH Beth Marks is a Research Associate Professor in the Department of Disability and Human Development, University of Illinois at Chicago (UIC) and Past President of the National Organization of Nurses with Disabilities. She co-directs the HealthMatters Program (HealthMattersProgram.org) and research programs related to the empowerment and advancement of people with disabilities through health promotion initiatives and primary health care. Jasmina Sisirak is an Associate Director of Training and Dissemination in the Rehabilitation Research and Training Center on Developmental Disabilities and health (RRTCDD) in the Department of Disability and Human Development at University of Illinois at Chicago (UIC). Her research interests consist of nutrition, health literacy, and health promotion for persons with intellectual and developmental disabilities. Case Presenter: Paula Burckhard Paula Burckhard is a proud North Dakota native, whose life journey has been deeply enriched by her roles as wife, mother, and advocate for people with disabilities. Married to her husband Kevin, Paula is mom to six young adults, four of whom have Down syndrome. She is also Mimi to two beautiful granddaughters. In her professional capacity, Paula serves as a Navigator with ND Navigators at the ND Center for Persons with Disabilities. In this role she serves vulnerable populations by providing enrollment assistance in the health insurance Marketplace or Medicaid. Paula's dedication to advocacy extends to her involvement as a former LEND (Leadership Education in Neurodevelopmental Disabilities) trainee and LEND Family Faculty member. She is a co-instructor for Minot State University's disabilities studies course. And, she also served as a family representative on a pediatrician's Medical Home team. | March 6, 2024 |
| Session 2: Breaking Barriers: Strategies for Recognizing Ableism in Healthcare and Inclusive Practices Discrimination, including ableism, has adverse effects on the health and well-being of children with special healthcare needs and individuals with disabilities. This session will examine practical approaches for inclusive healthcare practices that promote equal access and compassionate care for all. Session Objectives: 1. Describe health advocacy and the importance of multi-level advocacy approaches to assess/understand S/SDOH to access settingsâbased healthcare 2. Delineate strategies to advocate accessible healthcare to uproot systemic bias and ableism experienced by individuals within healthcare systems. 3. Apply strategies to incorporate accessibility and disability cultural humility across all healthcare practices and services. Speakers: Kathleen Bogart, PhD, M.A. Dr. Bogart is an Associate Professor of Psychology and Director of the Disability and Social Interaction Lab at Oregon State University. She is a social/health psychologist specializing in disability, ableism, and rare disorders such as facial paralysis. Dr. Bogart received the first annual Social Personality and Health Network Diversity in Research Award and was named OSU Honors College Eminent Mentor in 2022. An advocate for people with rare disorders and disabilities, she has served on several boards including the American Psychological Association Committee on Disability Issues in Psychology and the Moebius Syndrome Foundation Scientific Advisory Board. Passionate about disability community-building, she is the co-founder of the Disability Advocacy and Research Network (DARN) for psychologists who have and/or specialize in disability, and she is the faculty advisor for OSU's Disabled Students Union. | March 13, 2024 |
| Session 3: Disability Justice in Health Care: Recognizing the Structural Social, Economic, and Political Factors that Impact Disability Speaker: Mallory Cyr Mallory grew up navigating the world while managing a rare disease, Microvillous Inclusion Disease. Even though this has come with some "extra accessories'' and unique challenges, Mallory has created a fulfilling life both personally and professionally. With extensive experience in communications, public health, and policy, she's on a mission to show the world that living and thriving with a rare disease and disability is not only possible but can lead to extraordinary achievements. Mallory offers insights into resiliency, equity, and thinking outside the box. Her goal is to educate, and empower, moving from inspiration to action. With lived experience driving her work, Mallory shares her lessons learned to inform tangible solutions and systems change. | March 20, 2024 |
| Session 4: Caring for Young Adults with Intellectual and Developmental Disabilities People with intellectual and developmental disabilities experience unique challenges when navigating healthcare systems. This session will provide practical insights and strategies for accommodating diverse communication styles and sensory needs to foster an environment that promotes effective healthcare. Session Objectives: ⢠Identify the specific healthcare challenges faced by young adults with IDD. ⢠Discuss best practices to accommodate diverse communication styles and sensory needs. ⢠Identify preventive care measures and screenings tailored to the unique healthcare needs of this population. Speaker: Quang-Tuyen T. Nguyen, MD, FAAP Dr. Quang-Tuyen T. Nguyen (âDr. Qâ) is an associate professor in the Division of General Pediatrics and the inaugural Vice Chair for Justice, Equity, Diversity, and Inclusion (JEDI) in the Department of Pediatrics at the University of Utah serving the larger community through the University of Utah and Primary Childrenâs Intermountain Medical Center. Within her academic community, Dr. Nguyen has had a heavy focus on education, working with medical students and trainees, and now in her new role as Vice-chair, faculty development and engagement. Education efforts have included workshops and trainings on bias, course facilitation on difficult themes such as racism, parity, error, and justice in medicine, co-directorship of the pediatric Advocacy rotation, as well as evolving faculty development tools for mentorship and scholarship particularly within the scope of justice, equity, diversity and inclusion for all. | March 27, 2024 |
| Session 5: Navigating Healthcare Transitions: Perspectives and Best Practices for Youth, Families, and Providers Understanding the intricacies of pediatric to adult healthcare transition is pivotal for all stakeholders involved. Participants will gain valuable insights into the evolving landscape of support systems and entitlements, ensuring a seamless transition into adulthood for individuals navigating the healthcare system. Session Objectives: - Recognize the different perspectives of those involved in the HCT process - Discuss the service entitlements to adulthood eligibility - Outline the evidence-based practices for successful HCT Speaker: Gina Pola-Money Gina Pola-Money is the founder of Utah Family Voices and has served as Family Faculty for the URLEND program for the past 21 years. She currently volunteers for the Legislative Coalition for People with Disabilities as the treasurer and administrative support. She retired in 2020 as the Utah Parent Center, Associate Director, and Utah Family Voices, Family-to-Family Health Information Center, Director after being involved for over 31 years. Gina was one of the original family partners and developers of the Medical Home Portal. She still collaborates closely with various programs and partners to incorporate family involvement at all levels and areas of health and related systems, provide family input and advocacy to state and national level policies and programs, and assist families to build the necessary skills to effectively navigate the complex system of care. Case Presenter: The Roach Family | April 3, 2024 |
| Session 6: Healthcare Transition: Strategies for a Smooth Transfer of Care This session will highlight the recommendations, strategies and models to ensuring both pediatric and adult practices have an organized clinical process to facilitate transition preparation, transfer of care, and integration into adult-centered care. Session Objectives: - Define Got Transition's Six Core Elements of HCT. - Describe processes to plan, prepare, and facilitate smooth HCT Speaker: Heather Kappella | April 10, 2024 |