Making healthcare better and safer for people with intellectual and/or developmental disabilities (IDD).
Institute for Exceptional Care (IEC) works to make healthcare better and safer for people with intellectual and/or developmental disabilities.
That includes conditions like autism, Down Syndrome, and ADHD. We often refer to this as “IDD.”
Powering Progress Through Innovation
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The Need
16 million people with conditions like autism, cerebral palsy, and intellectual disability struggle to get the healthcare they need and deserve.
One third are Black, Brown and/or poor people who get diagnosed later, receive fewer services, and have poorer health than white people with these same conditions.
- People with developmental disabilities die younger, from suicide, accidents, and preventable medical complications. They have 3-fold higher mortality from COVID.
- We pay for expensive services like hospitalizations and long-term support but invest less in services that could keep people healthy and independent.
- Without support, affected adults with the potential to work can’t do so, and caregivers and parents have to take time off or stop working altogether.
- Total costs of services and lost productivity reach hundreds of billions of dollars annually (1-2% of GDP)
How We Work
To make healthcare work for people with IDD, IEC believes we need to fix how healthcare is taught, delivered, and paid for.
IEC is bringing together the healthcare and disability communities and building programs that will:
Change healthcare training, so that all clinicians feel confident and prepared to provide high-quality care and support for people with IDD.
Change how care is delivered, so that it respects the priorities and needs of people with IDD.
Change how healthcare services are paid for, so that providers can deliver whole-person, coordinated care and services that meet the needs of the IDD population.
IEC is led by a passionate team of healthcare experts who know how to drive changes in the system.
They are personally committed to this work – and to the priorities of the disability community – because they have the lived experience of caring for their own family members and loved ones with disabilities.
Our Leadership
Read our 2022 Impact Report
Find reflections on the events of 2022 and learn how we center our work on the perspectives and leadership of disability self-advocates.
IEC News
See what IEC has been up to lately by checking out the newest edition of our newsletter.
Listening to People with Disabilities
Understanding what matters most to people with IDD and their families is fundamental to creating positive change.
Disability self-advocates are involved in every IEC project at every level.
Hear some first-person reflections on their healthcare experiences and the change we need in our new video.
IEC Needs You
With your help, we can build a world where people with disabilities can thrive and live their best lives.
To make a donation to IEC, please click here.
As Heard on NPR
This NPR profile of IEC explores the autism journey of CEO Mai Pham’s own family, and how it led her to found IEC.
Sustainable Change Serves Everyone Better
Improving care for people with IDD will help us build a healthcare system that is more coordinated, more equitable, and better equipped to support our whole health.
When healthcare is more responsive to the needs of the most vulnerable, everyone benefits.