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IEC (institute for Exceptional Care)

Our Impact

Every day, IEC is bringing people together to make healthcare better. We are working to make sure it is safe and the best possible care for people with IDD.

People with IDD face unacceptable challenges and unfairness in our healthcare system. This video shows the experiences that people with IDD have far too often.

Our Partners

IEC has quickly become influential despite being a new organization. Our projects have involved many people and groups, such as:

--Dozens of people with IDD who advocate for themselves
--Family care partners
--Experts on disability
--Big university health centers
--National and regional health insurance companies
--Community health clinics
--State agencies for Medicaid and developmental disabilities
--Federal agencies in the Department of Health and Human Services
--People who start new businesses in healthcare and disability
--Professional organizations for doctors and other healthcare providers
--Groups that teach healthcare professionals
--Organizations that accredit healthcare providers

people with IDD
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care partners and/or caregivers
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clinicians
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medical centers
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health plans
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government agencies
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professional organizations for doctors and other healthcare providers
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nonprofit organizations
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Our Work

  • We developed Principles of Authentic Community Engagement. This is a framework with six guidelines that make sure the views of people with real-life experience of IDD stay the main focus of our work.
  • Our IIDDEAL Policy Summits brought together 57 people, including people from federal and state organizations, healthcare nonprofits, and funders.
  • We created the IDD Advocate Corps with a Founding Advisory Group of 23 healthcare leaders and self-advocates from across the country. Following our launch in 2024, over 100 people applied to join.
  • Our ABC3 Coalition launched the National Roadmap for Disability-Inclusive Healthcare, a plan for healthcare providers to learn how to give people with IDD the best healthcare possible. The Roadmap is supported by 120+ groups and individuals, and support is growing.
  • We are proud to have worked with important experts to create valuable research. These partners include:

    --Epic, the biggest electronic health record company in the US
    --Augusta University
    --Brandeis University
    --Milliman, a top healthcare data analysis company
  • Through the Making IDD Visible project, we made a detailed list of ICD-10 codes. ICD-10 is a system used by doctors to classify diseases. The codes we listed define the IDD population. We created this list by working together with people who have personal experience with IDD and doctors who have experience treating children and/or adults with IDD.
  • Our SCANS project designed and built the Always Uniquely Me App. This app helps people with IDD by giving them a way to:

    --Create a detailed digital summary of their healthcare and personal needs
    --Share this summary with doctors, clinicians, and first responders in any situation

    The app empowers people with IDD to communicate their unique needs effectively.
  • We were asked to present about two things:

    --Our solutions for improving healthcare
    --Our method for truly involving the IDD community

    We presented this information to:

    --Government agencies
    --Harvard University
    --Stanford University
    --National organizations for doctors and other healthcare providers who specialize in specific areas of medicine
  • We participate in important national projects and efforts, including the National Academies of Science, Engineering, and Medicine’s Committee on the Department of Defense’s Comprehensive Autism Care Demonstration Program; the Accrediting Council for Graduate Medical Education’s Planning Committee for its 2025 Summit on Medical Education in Disability; and many others.
  • We were awarded Behavioral Health Tech’s 2024 Nonprofit of the Year

IEC Impact Reports

IEC’s 2023 Impact Report will be out in June 2024.

Join the Movement

Join us in improving the healthcare system for people with intellectual and developmental disabilities. Learn more about how you can support IEC’s work and help create a better and safer healthcare system.

We’re hiring a Communications Manager! Learn more and apply by 7/24.