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Putting People with IDD First

Authentic Community Engagement

We involve people with IDD in our work to make sure the healthcare system meets the different needs of people with IDD.

Changing How the IDD Community is Included in Creating Healthcare Solutions

People with IDD are often left out when decisions about healthcare are made. The healthcare system will only meet the various needs of people with IDD when their opinions and experiences are actively sought out and given top priority.

IEC created guidelines for authentic engagement to make sure the views of people with personal experience of IDD stay the main focus of our work. These views must be fully shared and respected. This helps people with IDD feel confident in leading the creation of healthcare solutions.

Why This Matters

People with IDD often:

--Have healthcare needs that are not met
--Get lower quality care
--Don't receive preventive services
--Have higher rates of chronic conditions and preventable deaths

To fix this, we must truly commit to involving the IDD community in every part of the process.

Authentic engagement means building trust by turning feedback into action. This is crucial for designing healthcare models, research, policies, and programs that improve well-being. It takes a lot of investment but pays off by making sure we:

--Identify the right issues
--Create solutions that include everyone

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Authentic Community Engagement Highlights

Principles of Authentic Community Engagement

We can improve health outcomes by starting with experts in the IDD community. Our Principles of Authentic Community Engagement paper included more than 170 people. It lists out 6 ways we can help people with IDD lead our work. It also gives examples of how to make them happen in your own groups or organizations.

The principles include:

Making Healthcare Better and Safer for People with IDD

IEC works with people who have personal experience living with IDD and healthcare professionals. Together, they create new programs focused on patients' needs to change how healthcare is taught, provided, and paid for.

We’re hiring a Communications Manager! Learn more and apply by 7/24.