By Carli Friedman, CQL Director of Research
The choices and opportunities of people with intellectual and developmental disabilities (IDD) are often taken away from them based on the idea that this will help keep them safe. It’s also based on incorrect assumptions that people with IDD are dependent and not capable of making their own decisions. However, denying people with IDD choices and opportunities conflicts with person-centered practices, which should be based on the preferences, choices, and goals of people with IDD, as well as people’s rights. For these reasons, the aim of this study was to examine if taking away people with IDD’s choices truly kept them safer. To do so, we analyzed choice outcomes from Personal Outcome Measures® interviews with 250 people with IDD and compared this to data on injuries.
We found a 35% decrease in injuries for every one additional choice outcome present, even when all demographic factors were controlled. For example, controlling for all demographic factors, people with IDD with 0 out of 3 choices outcomes present had an average of 0.45 injuries a year (about once every two years on average), whereas people with IDD with 3 choice outcomes present had an average of 0.12 injuries a year (about one every eight years on average).
The Relationship Between Choices and Injuries
In addition to the impact of choices, people with IDD with comprehensive behavior support needs had more injuries than people with IDD without these support needs. People with IDD who communicated through verbal/spoken language had more injuries than people with IDD who communicated through other forms of communication. People with IDD who lived in provider owned- or operated-homes had more injuries than people with IDD who lived in their own homes or family homes.
“Attitudes about people with IDD and their abilities directly impact which choices people with IDD have and which choices are made on their behalf. Self-advocates have long advocated for their right to make choices and take risks. Expanding the choice-making opportunities of people with IDD not only honors their rights and the values of the self-advocacy movement, but may also play a role in people with IDD’s safety. Our study found a decrease in injuries when people with IDD had more service-related choice outcomes present. Beyond the potential impact on injuries, ultimately, choice is about ensuring people with IDD are supported to live the lives of their choosing” (Friedman, 2023, pp. 193-194).