Adults with intellectual and developmental disabilities (IDD) are often underrepresented when it comes to research studies. This can stem from excluding them based on their cognitive impairment and often researchers aren’t exposed to people with IDD. Including people with IDD through inclusive research can be highly beneficial. Inclusive research can lead to a better understanding of what people with IDD need when it comes to improving health outcomes.
Special Olympics has a trusted connection with people with IDD. With this connection, Special Olympics plays an important role in inclusive research and evaluation by encouraging athletes to get involved. By empowering athletes to get involved, this can help drive the changes needed to make research and evaluation more inclusive. Special Olympics’ involvement with inclusive research and evaluation can help us better understand the impact of Programs on athletes’ health. It can lead to improved support for athletes and develop new health programs. Special Olympics can use data from inclusive research to improve the health of athletes, which in turn will help the athletes compete at a higher level. One way Special Olympics includes athletes in inclusive research and evaluation is through Project ALL STAR.
I became involved in Project ALL STAR over a year ago when I became a member of the Athlete Advisory Board. I joined Project ALL STAR as a participant in Minnesota over 2 months ago. Project ALL STAR looks at how athletes’ physical, mental, and socio-emotional health is impacted by Special Olympics. There are currently six Programs enrolled in Project ALL STAR: Arizona, Colorado, Minnesota, New Mexico, Pennsylvania, and Wisconsin. The hope is to add other states and international Programs in the future. As a participant in Project ALL STAR, I recently took part in an In-Person Fitness Assessment. From my experience, the In-Person Fitness Assessment is similar to Health Promotion, with a mix of FUNfitness. They tested my balance, endurance, strength, and flexibility. I also had some important health metrics measured such as blood pressure, weight, and BMI. These are some of the indicators that are tracked as the study progresses to see how athletes’ health is impacted by Special Olympics.
Inclusive research can be used as a tool to help athletes learn how to advocate for themselves and for their fellow athletes. After I took the READI course and became involved with inclusive research, I decided I wanted to add it to the list of things I advocate for. READI stands for Research Engagement and Advocacy for Diverse Individuals. This was created by Karla Ausderau, a Professor and Director of Graduate Studies at the University of Madison, to help teach people with IDD about research. The course explains what research is, how it can be used to advocate for health care, and how to use research as an advocacy tool.
I realized how important inclusive research is when I began to look for research on obesity care for people with IDD. I wanted to write legislation on the topic, but I realized that there wasn’t any research data on the topic. This sparked my passion for inclusive research. My READI training is really what opened doors for me in the research spaces that I am involved in. I got involved with various projects such as creating tools for researchers to learn how to include people with IDD in research both as participants and as partners. Recently, I had the opportunity to interview three of my research colleagues. I asked them about their experience with working with people with IDD, why they got involved in inclusive research, and what can be done to include people with IDD in research as participants and as partners. The colleagues I interviewed were:
- Karla Ausderau, Professor and Director of Graduate Studies: Occupational Therapy at the University of Madison
- Elyse Kharbanda, Executive Director of Research Health Partners Research Institute
- Allison Caudill, Evaluation Coordinator Special Olympics
Karla Ausderau said that she has a lot of experience working with individuals with IDD. She mentioned that working with this population has made her think about what important health care priorities are. People with IDD have been research partners on her team, have helped collect and analyze research data, and are co-authors on publications and presentations. Karla also shared that working with people with IDD has made her research meaningful.
Being a mainstream researcher, Elyse Kharbanda didn’t have experience working with people with IDD in research. I was able to talk with her about looking into the need to include people with IDD. My partnership with Elyse has led me to being a collaborator on various projects, including being a co-author on a research article. Knowing that adults with IDD have higher cardiometabolic risks, we wanted to see if kids had the same risks–we found that they did. The article has been published in the Journal of Preventive Medicine. She said my work with her has been very meaningful and hopes to engage in more research opportunities.
Allison Caudill worked with Karla. She said that her introduction to inclusive research and evaluation was when she started working in Karla’s lab. When she began her PhD, she loved that she could combine her personal values such as inclusion and belonging in her studies. Allison said there is movement in the research space towards accessible research, and she wants to be a part of it. This passion has led her to a role at Special Olympics with the inclusive evaluation study, Project ALL STAR, where the two of us can continue our collaboration.
It is important that researchers and Special Olympics continue to take steps to make research and evaluation more inclusive. People with IDD have lived experiences that should be shared. Things such as changing the language in studies to make it more understandable can change the way we include those with IDD. Inclusion can range from doing studies that people with IDD can be involved with, such as Project ALL STAR, to figuring out ways to motivate researchers to partner with people with IDD.
I hope to see more opportunities for athletes to become involved as researchers. We can lead by example and encourage other research teams to include people with IDD on their teams. I am very happy to have Special Olympics step into the research and evaluation realm. Being an innovative and trusted organization, Special Olympics can help drive change in the research space.
There is a long way to go to ensure that people with IDD are included in research. This inclusion starts with ensuring that researchers are educated on why it is important to include people with IDD both as researchers and participants. For Special Olympics, the research data collected can help drive funding for health programs and help show how the health of not only athletes, but all individuals with IDD is impacted. When looking for health research data for people with IDD, it can be found!
