IDD Advocate Corps

PROGRAM DESCRIPTION

The IDD Advocate Corps

Passionate healthcare insiders are ideally positioned to navigate the bureaucracy and use their professional standing and relationships to create and accelerate positive change.

The IDD Advocate Corps is grassroots advocacy: a collaborative community of self-advocates, care partners, and healthcare professionals motivated to improve healthcare for people with disabilities by advocating both within specific organizations and throughout sectors in healthcare.

IEC has organized working groups by category (e.g., insurance, healthcare facilities, clinical education, government, etc.). Groups will identify sector-specific goals (developed, informed, and approved in partnership with disability self-advocates) and IEC will equip members with resources, shared learning, tools, and advocacy training.

Group leaders (who include at least one leader with IDD per group) will recruit members through channels like professional medical societies and disability organizations.

Map of United States with 13 states highlighted in orange, representing the areas where current Advocates are from

IDD Advocate Corps Members

We are building a national movement, with participants across the U.S. Our current participants span 12 states, and we are eager to expand that reach far and wide. Join us!

BACKGROUND

IEC partnered with a founding Advisory Group of over 20 healthcare volunteers and people with IDD to develop overarching goals, core values, a conceptual framework, and a draft charter.

We aim for equal representation for disability self-advocates who have diverse forms of IDD, racial and ethnic backgrounds, and communication needs. Healthcare participants include clinicians, government leaders, insurance executives, medical students, researchers, technology experts, and entrepreneurs.

We expect membership in the IDD Advocate Corps to continue expanding beyond the current 12 states.

IDD Advocate Corps Goals

  1. Identify change agents, allies, champions, influencers, and collaborators.  

  2. Bring together advocates in a safe and nourishing community.  

  3. Equip advocates with resources, shared learning, peer support, and training. 

  4. Co-develop a vision of a healthcare system that is universally designed to equitably support people with IDD.  

  5. Co-design the actions we want individuals and organizations in healthcare to take.  

JOIN THE IDD ADVOCATE CORPS

We need people like you to be a part of this inspiring movement. Healthcare professionals are in a unique position to navigate the system and use their professional relationships to make a positive impact. Community members bring valuable expertise from their lived experience to ground the solutions we advocate for.

Are you interested in joining the IDD Advocate Corps? Fill out this survey, and we will contact you.

PROJECT CO-LEADS

Elyse Pegler, MPH, Aetna

Madelyn Bahr, MSW, Institute for Exceptional Care (IEC)

FUNDING

We are grateful for support from the WITH Foundation.