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 works together with people with IDD, their families, and healthcare professionals. They create tools, programs, and campaigns to change how healthcare is taught, provided, and paid for.
The Challenge
Our healthcare system has strengths, but it can also be confusing and challenging. For the 16 million people with IDD, it may not work well and can even be dangerous. By using new ideas, we can make big changes to 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 combines knowledge from within healthcare and real-life experience of people with IDD. This helps 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…
- Focuses on each person and makes everyone feel valued.
- Sees the value in and rights of every person, no matter their abilities.
- Helps each person reach their full potential rather than aiming to be “normal.”
- Believes each person can make choices about their health needs and respects their right to decide for themselves.
- Builds trust by being flexible and willing to invest time in understanding and meeting each person’s needs.
- Supports mental/behavioral health, sexual/reproductive/gender health, dentistry, and managing chronic medical conditions.
- Sees patients as equal partners. Their personal knowledge about their health needs is just as important as expert opinions when working together to find solutions.
- 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.
- Gives the most rewards to healthcare partners that achieve results patients care about most.
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 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
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
Every day, is bringing people together to make healthcare better.
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 group met and Phase 1 policy summit held
2024
- National Roadmap for Disability-Inclusive Healthcare publication
- Recruitment for people to test Always Uniquely Me app
- IIDDEAL Phase 1 report released with national goals and next steps
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