40 Big Ideas

Summary

We have the right to make our own choices. Self-determination means having control over your own life. This includes making your own choices about daily activities, relationships, work, and where you live. It means setting personal goals and deciding how to reach them, with support when needed. Self-determination recognizes that everyone has the right to make decisions, take reasonable risks, and learn from experience. It involves understanding your strengths, knowing what assistance you need, and speaking up for yourself. True self-determination happens when people receive appropriate support while maintaining authority over their lives, fostering independence, dignity, and personal fulfillment.

“Nothing about us…without us,” personal causal agency, and people having the degree of control they desire over those aspects of life that are important to them are all concepts associated with what we refer to as self-determination. One of the godfathers of the self-advocacy movement, the late Irving Martin, probably said it best when he said, “Self-determination is about people with disabilities leading the lives they want to lead rather than the lives other people expect them to.”

The concept of self-determination has matured over the last several decades, as has our notion of how the self-determination of people with intellectual and other developmental disabilities (IDD) can best be supported. Originally focused on choice-making, we now understand that there are a variety of personal competencies that facilitate self-determination. Critical skills include goal setting, self-advocacy, and self-regulation. Knowledge of one’s personal preferences and rights, as well as an understanding of how the systems work, is also essential. Finally, self-determination is supported by a set of attitudes and beliefs, including a high level of self-efficacy and a sense of determination. As our knowledge of self-determination has grown, we have come to understand that while personal capacities facilitate self-determination, the social environment also plays a critical role. This social-ecological approach stresses that self-determination is embedded in the relationships we have with family, groups of individuals, and systems, including the educational and human service systems. When we change systems in ways that empower the individual, we have the potential to facilitate the self-determination of all people who experience IDD, including those with complex support needs.

Much progress has been made over the past decade in supporting the self-determination of people with IDD. Numerous schools have adopted The Self-Determined Learning Model of Instruction. Curricula have been developed to educate teachers and support staff to create environments supportive of self-determined behavior. As of 2025, 39 states have passed legislation recognizing or requiring the use of supported decision-making (SDM). Despite this progress, there is a long way to go before the founding goal of the Self-Advocacy Movement, “Nothing about us…without us,” is realized. Far too many educators do not include self-determination goals in student education plans. Case managers still inform parents that if they desire services for their young adult, they need to apply for guardianship, and the court system continues to assume that the label of IDD is sufficient for granting broad decision-making powers over adults with IDD to parents and others serving as guardians.

As we complete the first quarter of the 21st Century, we must continue to conduct research and expend effort at both policy and applied levels to develop new ways to support self-determination. Given that self-determination is a lifelong process, efforts must start shortly after birth and continue until a person has breathed their last. And importantly, this work should not require people with IDD to earn the right to self-determination, but rather, be grounded in an understanding of self-determination as a fundamental human right to which all people are entitled.