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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.

people with IDD
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care partners and/or caregivers
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government agencies
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“In a world where the disability community often feels overlooked, IEC's work is a testament to what can be achieved when we come together to advocate for change.”
–Jenson CaraballoSelf-Advocate and Accessibility Specialist, Regional Center for Independent Living
“My introduction to IEC inspired a new vision for my daughter’s life and well-being. IEC helped me learn that we shouldn’t have to look for the “one” special person to provide healthcare to the people we love. The system needs to change.”
–Staci AlexanderIEC Board Member, Parent, and Vice President, Thought Leadership, AARP
“At Sunflower Health Plan, a wholly owned subsidiary of Centene Corporation, we believe the patient voice is an important component to effectively navigating solutions to health problems. As the Chief Medical Officer and a practicing physician, I've learned the vital importance of involving individuals – including those with disabilities – in discussions about their care. My experience with IIDDEAL has reaffirmed my practice of patient-centered care and has reminded me of my obligation to seek that personal input in healthcare decisions. I am forever grateful.”
–Dr. Michael G. SkochChief Medical Director, Sunflower Health Plan
“As a pediatrician and child psychiatrist, I have personally seen the challenges faced by youth with IDD and their families as they navigate the complex health system. IEC is playing a critical role in leading this movement to allow for all of us to better see individuals with IDD and to hear their voices and the voices of their families.”
–Dr. Gary MaslowCo-Chief, Division of Child and Family Mental Health and Community Psychiatry, Duke University School of Medicine
“People with intellectual and developmental disabilities (IDD) often receive care that is not patient-centered, is ineffective, and sometimes does more harm than good. IEC takes a holistic view of the issues and is creating interventions that truly have the potential to be transformative.”
–Dr. Susan HingleAssociate Dean for Human and Organizational Potential at the Southern Illinois University School of Medicine
“You have to want to create change. And I see IEC as a group and as a family that wants to create change.”
–BJ StasioSelf-Advocate and Peer Specialist Western Region 1/Self-Advocacy Coordinator, New York State Office for People with Developmental Disabilities
“One of the things I've been most impressed with is the action. It's not just, hey, let's talk about this and hope things change. This organization is taking steps and doing things that will make a change.”
–Dr. Craig EscudéPresident, IntellectAbility
“As both a physician and parent with personal experience, I appreciate IEC’s impact on strengthening the health care system, promoting person-centered care, and improving the quality of life for people with IDD.”
–Dr. Carolyn LangerVice President and Chief Medical Officer, National Accounts, Elevance Health
“My work with IEC has clearly demonstrated the vast unmet healthcare needs of the IDD community. Clinicians and the healthcare system must open their hearts and minds to this community. We can and must do more to help IDD patients.”
–Dr. Helen BurstinCEO, Council of Medical Specialty Societies
“The IDD Advocate Corps is a movement that’s desperately needed. The medical system is unprepared to deal with disability, especially people with autism and other developmental disabilities.”
–Nicole LeBlancSelf-Advocate and IDD Advocate Corps member
“You guys [IEC] ... are really going to educate people. Really going to teach people how to serve, medically, people with disabilities. Because it is not easy work, but the fact that you guys are ... putting research into it, like, wow.”
–Martha HaythornSelf-Advocate
“It is so validating to be seen, heard, and respected.“
–Zanetha MatisseSelf-Advocate
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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

2022 Impact Report

  • Download PDF

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.

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