Our Story
Better, Safer Healthcare
IEC (Institute for Exceptional Care) is a national nonprofit working to make healthcare better and safer for people with intellectual and/or developmental disabilities (IDD). IEC partners with people with lived experience of IDD and healthcare leaders to change the way care is taught, delivered, and paid for by creating new programs that center patients.
The Challenge
Our healthcare system does some things really well, but it can also be complicated and frustrating. For 16 million people with intellectual and developmental disabilities (IDD), it can be ineffective and even unsafe. By tapping the power of innovation, we can transform our system.
Our Solution
We work together with the healthcare and IDD communities to strengthen how healthcare is taught, delivered, and paid for, driving sustainable change so that:
All clinicians feel confident and prepared to provide high-quality care and support for people with IDD;
The health priorities and needs of people with IDD are properly addressed; and
Insurance coverage supports whole-person, coordinated care and services that meet the needs of the IDD population.
Mission
IEC brings together healthcare insider knowledge with lived experience of intellectual and/or developmental disabilities (IDD) to make healthcare better and safer for people with IDD.
Vision
A world where people with disabilities enjoy the best possible health so they can live life to the fullest.
Values
We believe healthcare works best when it…
- Is person-centered and validates every person it serves.
- Recognizes inherent human worth and rights instead of judging people’s worth based on ability.
- Helps each person reach their full potential rather than aiming to be “normal.”
- Assumes each person's ability to make, and honors their self-determination in, decisions about health needs.
- Builds trust by being flexible and willing to invest time in understanding and meeting each person’s needs.
- Views patients as equal partners whose personal wisdom about their health needs is as valuable as professional expertise in solving problems together.
- Understands that clinical standards matter most when they are used in service of and in concert with a person’s health goals.
- Is designed and delivered so that care is easy to access, easy to navigate, and affordable for everyone.
- Helps people thrive by connecting them to community services beyond healthcare.
- Offers the greatest financial and other rewards to healthcare partners that deliver results that matter to patients.
leading healthcare
Founding Story
IEC was born out of the frustrations and anxieties that too many families face in getting proper medical care for their loved ones with IDD. Founded by Dr. Mai Pham and other healthcare professionals, IEC was created to drive sustainable change after their own difficult experiences navigating the healthcare system.
As a physician herself, Mai witnessed firsthand the lack of education, poor care coordination, and haphazard treatment her own child received growing up autistic. Mathematically gifted, kind, and highly observant, her child faced increasing struggles over time due to unreliable school and clinical support. Mai relates, “We encountered a lot of problems coordinating services…no one told us what to expect at different stages of development, and we had clinicians who gave him the right drug for the wrong reasons at the wrong dose just because they weren’t educated enough.”
IEC’s founders have led national healthcare transformation efforts in both public and private sectors. They understand the lack of clinical education, fragmented coordination among services, and dismissive attitudes that families often endure. They witnessed the daily barriers caused by a system ill-equipped to care for the complex needs of those with IDD. But based on their industry experience, they also saw the promise and potential when empathetic clinicians, robust training programs, advocates, and inclusive policies all work together seamlessly.
Today
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.
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.
Every day, IEC is delivering 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 centering their perspectives in the co-creation of solutions.
Our History
2020
- IEC founded
- National Public Radio and Kaiser Health News feature IEC
2021
- Action to Build Clinical Confidence and Culture (ABC3) formed
- Seamless Care Alliance of Nassau & Suffolk (SCANS) steering group formed
- NASEM workshop held
2022
- Individuals with IDD Engaged, Aligned, and Leading (IIDDEAL): Phase 1 project kickoff
- Making IDD Visible (MIDDV) planning team formed
- ABC3 focus groups held
2023
- IDD Advocate Corps advisory group formed
- Always Uniquely Me app design completed
- IIDDEAL Phase 1 consensus working group convened and Phase 1 policy summit held
2024
- National Roadmap for Disability-Inclusive Healthcare publication
- Always Uniquely Me app pilot recruitment
- IIDDEAL Phase 1 findings released with national goals and next steps
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