What We Do

Our Approach

IEC centers the perspectives of people with lived experience of IDD and builds broad coalitions across the healthcare system to co-design solutions that are both practical and transformative.

Changing How Healthcare is Taught

Changing How Healthcare is Delivered

Change How Healthcare is Paid For

Advocacy + Policy

The Challenge

For individuals with IDD, accessing high-quality healthcare that aligns with their unique needs and preferences has been a longstanding challenge. They are more likely than the general population to have unmet healthcare needs, receive lower-quality healthcare, and access fewer preventive services. Additionally, they have higher rates of mental health challenges and chronic conditions like diabetes, as well as deaths from COVID-19, suicide, and childbirth.

What We Do

IEC brings together people with lived experience of IDD and healthcare professionals to work from within the system to change the way healthcare is taught, delivered, and paid for.

Why This Is Transformational

When we center on the needs and perspectives of people with IDD, we build healthcare solutions that can benefit many other people. IEC’s approach promotes a system that is flexible and can adapt to individuals’ unique needs.

1 in 20 Americans have IDD
66%: how much more the average healthcare spend is for a person with IDD
4x: how much more likely a person with IDD is to be mistreated by healthcare professionals than a person without IDD
60%: the percentage of physicians who say they feel unprepared in their ability to provide quality care to people with disabilities
3x: how much more likely a person with IDD is to be denied healthcare than a person without IDD

Our Programs

IEC’s work operates under three pillars and is infused with the engagement of the people we support at every step of our planning and implementation.

Change how healthcare is TAUGHT: So that all clinicians feel confident and prepared to provide high-quality care and support for people with IDD.

Change how healthcare is designed and DELIVERED: So that it respects the priorities and needs of people with IDD.

Change how healthcare is PAID FOR: So that providers can deliver whole-person, coordinated care and services that meet the needs of the IDD population.

Highlight ADVOCACY + POLICY: So that the expertise of people with lived experience of IDD is centered in all that we do.

Taught

ABC3: Action to Build Clinical Confidence and Culture 

Changes how clinicians are trained to treat people with IDD, helping them to serve people with IDD equitably and effectively

Delivered

SCANS: Seamless Care Alliance of Nassau and Suffolk

Changes how healthcare is delivered to avoid unnecessary emergency visits, improve emergency care, and ease transitions back to the community for people with IDD

Paid For

IIDDEAL (Individuals with IDD Engaged, Aligned, and Leading): Outcomes That Matter

Changes which healthcare outcomes get measured and how, ensuring person-centered care for people with IDD

Making IDD Visible

Changes how healthcare data is analyzed to empower people with IDD, help them access the right services, and address disparities

Advocacy + Policy

IDD Advocate Corps

Implements change with community advocacy by bringing together people with lived experience of IDD and healthcare professionals to create a safer and more inclusive healthcare system

Authentic Community Engagement

Our foundational principles of changing how the IDD community is included in creating healthcare solutions

Bringing Together System Knowledge and Personal Passion

IEC has the credibility, connections, and commitment to create meaningful change for the IDD community in healthcare. Founded by healthcare professionals who are also loved ones of people with IDD, we understand the challenges of navigating support services firsthand. Our staff’s healthcare transformation expertise means we grasp the inner workings of the system. Together, these allow us to build broad coalitions, co-create inclusive solutions, and advocate for an equitable system.