AIDD2Health: Access for Intellectually and/or Developmentally Disabled People to Health-Related Research Projects
About the Project
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. These strategies, tools, and models use universal design for learning principles.
We want to make sure that intellectually and/or developmentally disabled (I/DD) people are included in all areas of health research. Inclusion will help people with I/DD 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
- 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 IRB/University 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.
“The key to success is involving individuals with IDD and their family members as experts, guiding the team throughout the process, and we’ll engage the broader IDD community, IDD professionals, health researchers and institutional stakeholders to explore practical ways to facilitate inclusive research.” - Yumi Shirai
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/
Project Core Team:
Project Lead, Co-Lead and Program Coordinator:
- Yumi Shirai, PhD
- Julie Armin, PhD
- Linda Nazifi
Project Core Team:
- Claire Adams
- Michael Sanderfer
- Madison Harper
- Susie Turrey
- Jack McHugh
- Sarah Worthington
Sonoran University Center for Excellence in Disabilities –
Staff, Faculty & Students:
- Lizzy Jeffrey-Franco, MPH
- Anne Catherine Lednicky, Student Research Assistant
- Tammie Bassford, MD
- Jeff Greenfield, Student Research Assistant
- Lynne Tomasa, PhD
- Freya Abraham, Student Research Assistant
Partners
UA Institutional Review Board Staff:
- Christine Melton-Lopez, MS, CIP
- Mariette Marsh, MPA, CIP/CHPC/CHRC
U of WISC: Ausderau Lab:
- Karla Ausderau, PhD, OTR/L
Special Olympics of Arizona:
- Gianna Zola, Health & Athlete Leadership Senior Coordinator
National Down Syndrome Society:
- Dana Sciullo, MOT, OTR/L, Research Associate
Arizona Disabilities Planning Council:
- Steve Freeman
American Association on Intellectual and Developmental Disabilities:
- Margaret A. Nygren, EdD, FAAIDD, Exective Director & CEO
Southwest Autism Research & Resource Center/Arizona State University:
- Joshua Anbar, DrPH, MPH