Access for Intellectually and/or Developmentally Disabled People to Health-Related Research Projects

Image of four medical researchers dressed in scrubs sitting at a table and looking at a laptop screen which one of them is pointing to.

AIDD2Health: Access for Intellectually and/or Developmentally Disabled People to Health-Related Research Projects

About the Project

Mission

Our mission is to support health-related research that addresses what intellectually and/or developmentally disabled people want for healthy living. This includes physical and mental health, direct services, policy development, education, and other issues related to health and community living. We want to support research that is accessible, inclusive and ethical. We are self-advocates, supporters, and researchers in Arizona. We are working to develop strategies, tools, and models that others around the U.S. can use. We use Universal Design for Learning (UDL) principles to develop our tools and models.

Vision

We want to make sure that intellectually and/or developmentally disabled (IDD) people are included in all areas of health research. Inclusion will help people with IDD have fair access to good health and community living. This means disabled people and their supporters will get help from: fair policies, ethical practices, accessible information, and culturally responsive approaches.

Objectives

Make sure that people with IDD can access health-related research projects that are important to them.
Teach researchers and the Institutional Review Boards (IRB) at Universities about IDD-inclusive research practices and how to use them in health-related projects.
Create a library of resources and tools that promote inclusion of people with IDD in research.

Why is Building Capacity in Health-Related Research to Include People with IDD important?

People with intellectual and developmental disabilities (IDD) have a higher prevalence of chronic health conditions, such as diabetes and psychiatric disorders, compared to the general population. However, they are underrepresented in health-related research and national data. To promote equitable access to health-related projects that are important for people with IDD, the Sonoran Center for Excellence in Disabilities received a two-year, $250,000 grant from the Patient-Centered Outcomes Research Institute (PCORI). https://www.pcori.org/

Image of blue guidebook cover on top of a wooden backgorund. The guidebook's title reads: A Guide to Using Universal Design for Learning (UDL) to Enhance Inclusive Health Research.

A Guide to Using Universal Design for Learning (UDL) to Enhance Inclusive Health Research

This guidebook is designed for researchers seeking knowledge, skills, and resources for inclusive research practices. While it specifically focuses on working with people with intellectual and/or developmental disabilities (IDD), the information is applicable to all people through the use of Universal Design for Learning (UDL) as a framework.

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