Another explanation for critical gaps in research and understanding of people with IDD has to do with the exclusion of people with IDD from research studies. This exclusion is attributed to several factors, including the relatively small population size of people with IDD, historical lack of power and influence among this group, concerns about exploitation and vulnerability in research settings, overly cautious ethics committees, assumptions about inability to provide informed consent, and inaccessible study materials and processes.
The impact of this exclusion is significant and far-reaching. It denies people with IDD the opportunity to contribute to scientific knowledge and ensures that research findings may not be applicable to this population. Furthermore, it results in a lack of data on the health and well-being of people with IDD, making it difficult to identify and address issues uniquely affecting this group. This underrepresentation ultimately perpetuates health disparities and limits our scientific understanding of people with IDD.
Recommendations for increasing the inclusion of people with IDD in research
Inclusive research approaches are on the rise and help create studies that better represent and serve the IDD community and advance overall scientific knowledge.
Recommendations for inclusive research include:
- Adapting research materials and processes for accessibility,
- Using plain language and simplified consent procedures,
- Offering individualized accommodations and supports, building community partnerships with IDD organizations, and
- Including people with IDD in leadership roles throughout the research process.
Further, it is vitally important to consider the capacity for people with IDD to consent to participating in research, which can be addressed through tailored questions, developing flexible recruitment strategies, and involving people with IDD at all stages of the research process.