Centering People with IDD
IDD Advocate Corps
The IDD Advocate Corps brings together individuals with intellectual and developmental disabilities (IDD) and healthcare professionals to reduce systemic barriers that trap families in cycles of poor health and economic insecurity.
Implementing Change Through Transformative Solutions
IEC formed the IDD Advocate Corps as a powerful grassroots effort that brings together people with lived experience of IDD and passionate healthcare professionals to create a safer, fair, and more inclusive healthcare system.
Healthcare professionals are uniquely positioned to navigate the system and use their professional relationships to make a positive impact. Self-advocates with IDD and family members bring valuable expertise from their lived experiences to shape the transformative solutions that we advocate for.
We know that having people with lived experience leading solutions results in better solutions. Our Advocate Corps embeds people with IDD in healthcare leadership and decisions while also connecting self-advocates to employment opportunities and healthcare networks that are deeply influential.
We pay our partners with lived experience because their time and expertise are invaluable.
- $350 Billion annually is spent on the wrong services that don’t improve people’s health
- Working-age adults with disabilities are almost twice as likely to have income 200% below the Federal Poverty Level
- 4x how much more likely a person with IDD is to be mistreated by healthcare professionals
- 60% the percentage of physicians who say they feel unprepared in their ability to provide quality care to people with disabilities
Why This Matters
People with IDD face greater healthcare challenges than the general population, including limited access to preventive services and providers trained to meet their needs. These barriers contribute directly to:
- Earlier death due to misdiagnosis, overmedication, and accidents
- Lost income and employment opportunities
- Financial strain for people with IDD
Because preventable health complications lead to increased medical costs, lost income, and caregiving needs, poor health outcomes contribute directly to financial instability for individuals and families—particularly those who are already vulnerable. By addressing these challenges, the Advocate Corps helps mitigate poverty while advancing better health, ensuring that individuals with IDD can thrive both physically and economically.
Our Approach
The Advocate Corps improves healthcare through focused advocacy, mutual learning and skill-building, and systems improvement, with measurable outcomes that support health and economic and social holistic well-being (including economic, health, and social well-being).
- Policy & Advocacy: Drives policies that reduce healthcare-related financial strain and expand access and improve the quality of services for people with IDD.
- Health Systems Improvement: Partners with providers to improve how care is delivered. By promoting clinical training and tools to support better clinical decision-making, we aim to increase access to effective health services (physical, dental, and mental) and combat medical debt.
- Learning and Skill-Building: Helps Corps members become fluent in healthcare issues and leaders in creating system change.
- Community Empowerment & Workforce Development: Our new Fellowship Program provides paid opportunities for self-advocates, enabling them to gain professional skills, build résumés, grow their professional networks, and connect to new job opportunities.
The IDD Fellowship Program (Pilot Cohort Launching in 2026!)
The IEC Advocate Corps Fellowship Program is a two-year, paid experience focused on workforce development. The program was developed in response to the needs of our low-income community members and their desire for paid leadership roles, professional skill-building, and career development opportunities.
Rather than viewing people with IDD solely as patients, the Fellowship builds their potential to contribute as professionals by providing them with a structured curriculum, a monthly stipend, 1:1 mentorship, hands-on project experience, and a supportive learning community.
This allows them to earn $50/hr. while they co-design tools, enhance clinical education pathways, and improve healthcare quality within their communities and nationally.
Committees & Workgroups
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Governance Committee
Founding Advisory Group members who provide formal governance and guide membership initiatives.
Policy Committee
Develops and amplifies the IDD Advocate Corps policy platform. Provides guidance to improve healthcare for people with IDD by ensuring policies and advocacy efforts are well-informed, inclusive, and responsive to the needs of the disability community.
Research & Learning Committee
Supports ongoing training, provides resources, and assists with developing accessible materials for members to enhance their knowledge and skills. Helps members feel prepared to act within their respective communities, organizations, and groups.
Communications & Planning Committee
Provides cross-functional communication support to members, collects health stories, manages social media and messaging campaigns.
Health Systems Workgroup
Advocating for high quality care within the health system through hospitals, clinics, and other healthcare facilities and building capacity to understand the needs of people with IDD and their families.
Self Advocate Commons
A designated space for self-advocate members to connect privately, share experiences, and discuss learnings. Empowers members through peer support, shared learning, and open communication as they grow advocacy skills and take collective action in advocating for improving healthcare.
IDD Advocate Corps Highlights
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2026
In summer 2026, we will launch a pilot of a new Fellowship Program. It is a workforce development program that alleviates financial strain for people with IDD, connects them to healthcare networks, and builds their professional skills.
2025
The Health Systems Workgroup is advocating within healthcare systems in partnership with the SCANS coalition to pitch and implement solutions for better supporting people with IDD in emergency departments.
2025
In June 2025, advocacy training will be offered to all members of the Corps, providing them with individualized support, knowledge, and real-life applications for applying their advocacy skills in their own communities and organizations.
2025
Driving impact through six specialized subgroups, each focusing on key areas, to meet and advance targeted initiatives while coordinating efforts to amplify our collective mission.
2024
Created a member portal and online community for self-advocates and healthcare professionals to interact. It includes opportunities for members to submit their healthcare experience stories and a resource library accessible to all members.
2024
Working groups created sector-specific goals and plan activities for advocacy within their own organizations and communities.
2024
Formally launched IDD Advocate Corps, recruiting for additional advocates. Some members serve as peer leaders in leadership roles in working groups.
2023
Developed the core values, goals, activities, and structure for the IDD Advocate Corps.
2023
Formed Founding Advisory Group made up of 23 healthcare leaders and self-advocates from across the country.
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
- Omar Mobasher, Manager of Programs and Development, IEC
Founding Advisory Group Members
- Elyse Pegler, Lead Director, National Value Based Solutions Development, Aetna
- 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, resident physician, host, creator, & co-producer of the Annals of Family Medicine Podcast and self-advocate
- 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.