Centering People with IDD
IDD Advocate Corps
A collaborative community of healthcare professionals and people with lived experience of intellectual and/or developmental disabilities (IDD) motivated to improve healthcare by advocating within the system.
Implementing Change through Community Advocacy
IEC formed the IDD Advocate Corps as a powerful grassroots effort that brings together people with lived experience of IDD and healthcare professionals to create a safer and more inclusive healthcare system.
Healthcare professionals are uniquely positioned to navigate the system and use their professional relationships to make a positive impact. Community members bring valuable expertise from their lived experiences to ground the solutions we advocate for.
Members work together – sharing resources, learning together, and receiving advocacy training – to bring about large-scale change across the healthcare industry.
- 1 in 20 Americans have IDD
- 60%: the percentage of physicians who say they feel unprepared to provide quality care to people with disabilities
- 2.7x: how much more likely a person with IDD is to experience harm when admitted to the hospital compared to a person without IDD
Why This Matters
Implementing large-scale change within the US healthcare system is a complicated undertaking. Coordinating efforts among healthcare professionals, institutions, payers, and policymakers requires a delicate balance to ensure alignment of goals. Additionally, resistance to change, deeply ingrained practices, and a risk-averse culture within the healthcare sector slow innovation and transformation.
Working from within the system is a crucial way to achieve meaningful and sustainable change. Internal stakeholders can act as allies and advocates for change, influencing their peers and promoting a culture of innovation.
However, the support of healthcare insiders is only one piece of the puzzle. The experiences and needs of people with IDD are routinely excluded from healthcare decision-making. Only when their perspectives are consulted and valued will the system not only accommodate – but fully embrace – the diverse needs of people with IDD.
IDD Advocate Corps Highlights
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2023
Formed Founding Advisory Group made up of 23 healthcare leaders and self-advocates from across the country.
2023
Developed the core values, goals, activities, and structure for the IDD Advocate Corps.
2024
Formally launched IDD Advocate Corps, recruiting for additional advocates. Some members serve as peer leaders in leadership roles in working groups.
2024
Working groups will create sector-specific goals and plan activities for advocacy within their own organizations and communities.
2024
We will create a member portal that will include an online community for self- advocates and healthcare professionals to interact, an opportunity for members to submit their healthcare experience stories, and a resource library accessible to all members.
Join the Movement. Be a Changemaker.
We need people like you to be a part of this movement. By combining insider knowledge with first-hand expertise, we can overcome resistance and ingrained practices to build a safer, more inclusive healthcare system that truly meets the needs of people with IDD.
IDD Advocate Corps Members
The IDD Advocate Corps is a diverse coalition that includes people with IDD, care partners/givers, clinicians, researchers, and other healthcare leaders. The Corps operates collaboratively, based on the principles of Authentic Community Engagement – learning from the lived experience of people from IDD and the perspectives of healthcare professionals and creating commonsense solutions.
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Project Lead
- Elyse Pegler, Lead Director, National Value Based Solutions Development, Aetna
- Madelyn Bahr, Senior Program Specialist, IEC
Founding Advisory Group Members
- Laura Coleman, Clinical Research Coordinator, SPARK Atlanta, Marcus Autism Center, Emory University
- Jensen Caraballo, Accessibility Specialist, Regional Center for Independent Living; Board Member for SPM, Disability Justice Fund
- Sherri Eldin, Family Medicine Resident, writer
- Howard Haft, Adjunct Professor, University of Maryland School of Medicine, independent consultant, former Executive Director Maryland Primary Care Program
- Sue Hingle, Professor of Medicine, Associate Dean for Human and Organizational Potential, Southern Illinois University
- Adam Hjerpe, Board Chair 2026 Special Olympics USA Games, Business Advisor and Investor
- Nicole LeBlanc, Consultant, Peer Advocate at Liberty Health, Self-Advocate Advisor at TASH
- Sharon Levine, Associate Executive Director, Permanente Medical Group
- Emily Metzger, Director of Payer Strategy and Engagement, Aledade Inc.
- Mai Nojima, Medical Student, Kaiser Permanente
- Colleen O’Rourke, Vice President of Network Contracting and Provider Engagement at Optum
- Donna Perlin, Tristar Centennial, Board of Autism Tennessee
- Rebecca Anhang Price, RAND Corporation
- Robbie Singal, Director of the Science and Technology Platform at Ariadne Labs
- Dodie Turcotte, insurance and benefit consulting executive
- Yolanda Vargas, student at California State University, Chair of the Working for Inclusive, Transformative Healthcare Foundation (WITH) former Board Member for Disability Rights California
IEC is grateful for the following funders, whose support makes the IDD Advocate Corps possible:
Making Healthcare Better and Safer for People with IDD
IEC partners with people with lived experience of IDD and healthcare professionals to change the way care is taught, delivered, and paid for by creating new programs that center patients.