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IEC (institute for Exceptional Care)

Our Impact

IEC delivers on its mission of building a movement that gives people with IDD the safe, informed, and high-quality care they deserve across every service and setting and centers their perspectives in the co-creation of solutions.

People with IDD face unacceptable barriers and disparities within our healthcare system – from being unable to access basic care to having their unique needs and priorities dismissed to experiencing harm and even unnecessary death. This video provides a powerful window into the all-too-often experiences of people with IDD, underscoring the need for change and the stakes that motivate our work.

Our Partners

IEC has gained rapid influence for a young organization. Our projects have engaged dozens of self-advocates and family caregivers/partners, disability experts, major academic health centers, national and regional health insurance companies, community clinics, state Medicaid and developmental disabilities agencies, federal Health and Human Services agencies, healthcare and disability entrepreneurs, clinical societies, clinical educational associations, and groups that accredit healthcare providers.

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Our Work

  • We developed Principles of Authentic Community Engagement, a framework with six principles that ensure that the perspectives of people with lived experience remain the primary focus of our work.
  • Our IIDDEAL Policy Summits attracted over 57 attendees, including representatives from federal and state agencies, healthcare quality-focused 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 clinicians 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 partnered with key thought leaders in producing important research, including Epic, the country’s largest electronic health record company, Augusta University, Brandeis University, and Milliman, a leading healthcare analytics firm.
  • Through Making IDD Visible , we created a detailed list of International Classification of Diseases, 10th edition (ICD-10) codes, defining the IDD population in collaboration with people with lived experience and clinicians experienced in working with children and/or adults and with IDD.
  • Our SCANS project designed and built the Always Uniquely Me App, which empowers people with IDD by providing a rich digital snapshot of their healthcare and personal needs to share with clinicians and first responders in any situation.
  • We were invited to present our healthcare solutions and our approach for authentic community engagement to government agencies, Harvard and Stanford Universities, and national clinical societies.
  • We serve on key national initiatives, 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 transforming the healthcare landscape for people with intellectual and developmental disabilities. Explore the many ways you can support IEC’s mission and contribute to creating a more equitable, inclusive system of care.