Impact Feature Issue on Self-Determination and Supported Decision-Making for People with Intellectual, Developmental, and Other Disabilities

When Edward Deci and Richard Ryan – two ground-breaking researchers on human motivation – first proposed a theory of self-determination in 1985, it is unlikely that they foresaw the impact that their work would eventually have on people with disabilities. Deci and Ryan, however, were not the first to recognize the importance of self-determination. English philosopher John Locke in 1689 contended that all individuals have natural rights (Locke, n.d.). He argued that one of the primary functions of government was to protect these rights as part of an unwritten contract between individuals and those who govern them. A person could voluntarily give these rights away, but when they were taken from people without consent, Locke viewed the situation as equivalent to slavery.

For many years, people with intellectual and developmental disabilities have often not been adequately supported to exercise control over their lives. At first, this occurred within a culture that hadn’t yet understood the importance and possibility of people with disabilities exercising self-determination, and didn’t yet have available the strategies to support it. In later years, court systems took away opportunities for the exercise of control through guardianship hearings that all too often were based upon presumed incompetence on the part of the people in question. The self-advocacy movement in the U.S. changed much of this as it emerged and grew in the 1970s and ’80s. Subsequently in the early 1990s the U.S. Department of Education authorized the first research to be undertaken on self-determination as it specifically applied to people with disabilities.

These first attempts to better understand self-determination were relatively crude, failing to consider many aspects of a multifaceted construct. Since then, the involvement of self-advocates, family members, and other concerned stakeholders has pushed researchers, policymakers, and human service professionals to view self-determination in a more nuanced light. As a result, the concept has evolved, both with respect to our understanding of it and how it can be applied to better support people with disabilities to experience high quality lives. 

In the remainder of this article an attempt will be made to trace the evolution of self-determination as it relates to people with disabilities. Detailed discussion of its relationship to political ends and psychological needs is left to others. However, as this is where the concept originated, this is where we will begin.

Self-Determination as Political and Psychological Concept

Tracing the concept of self-determination back to Locke, one can see that it originated within a political context. Locke viewed it as the right of all people to own property and exercise personal control over their lives, and argued that all “men” are created equal. He contended that governments are formed through a social contract to preserve the natural rights to life, liberty, and property. This line of thinking led to the development of the concept of representative governments. Following the conclusion of WWI, U.S. President Woodrow Wilson employed the concept of self-determination as a guiding principle for redrawing European maps to establish what he referred to as a “just order.” The concept also played a critical role in the Velvet Revolution within the Czech Republic in 1989 and recent events in Armenia in which the people took back political power from governments that did not represent them. Within these contexts, self-determination can be defined as a community's right to choose its political destiny.

An individually-based perspective on self-determination first developed out of the work of Deci and Ryan (1985), who described their theory as a framework of motivation and personality that addressed three universal, psychological needs: competence, autonomy, and relatedness. They argued that if these needs were met, people would function optimally. A key component of the theory is the idea that in order to maximize one’s potential the social environment needs to nurture a person’s needs in each of the three areas.

Functional and Ecological Models of Self-Determination

When self-determination was first applied to people with disabilities in the early 1990s it was narrowly defined. Emphasis was placed on personal control and choice-making with a focus on transition-age youth and adults with disabilities. In many programs of research, self-determination and control were not even differentiated from each other. As a result, personal and cultural preferences with respect to the amount of control people desire over their lives were essentially ignored. As research on self-determination progressed, however, appreciation for its complexity increased exponentially. 

In his Functional Model of Self-Determination, Wehmeyer posited that self-determination involved “the act of making conscious choices that enable one to act as the primary causal agent in one’s life free from undue external influence” (Wehmeyer, Kelchner, & Richards, 1996, p. 632). In their most recent writings, Wehmeyer and Shogren have further developed their idea of causal agency, contending that self-determination is a “dispositional characteristic manifested as acting as the causal agent in one’s life,” with self-determined people focused on achieving freely chosen goals (Shogren, et al., 2015, p. 252). 

A somewhat different approach to self-determination is found in the Ecological Theory of Self-Determination (Abery & Stancliffe, 2003; Abery, Olson, Poetz, & Smith, 2019). While acknowledging the importance of personal capacities, this framework views self-determination as exercised within the context of relationships with other individuals, groups of people, or systems. It therefore stresses the importance of the environment. Self-determination is viewed as “individuals exercising the degree of personal control they desire over those areas of life that are important to them” (Abery et al., 2019). This approach views self-determination as heavily influenced by opportunities for control available within one’s environment and the support received from one’s social network (i.e., the social capital one has available). Self-determination, accordingly, is viewed the product of both the person and the environment.

Although these two approaches to self-determination might appear different, they both focus on individuals with disabilities acquiring a set of personal capacities (skills, knowledge, attitudes/beliefs) that together with the environment support the exercise of self-determination. Over the years, the work of these groups, as well as that of other researchers, has broadened our understanding of how self-determination develops. We now recognize that it is a life-long issue rather than one of adolescence and adulthood (Abery & Stancliffe, 2003; Palmer & Wehmeyer, 2003). It has also become clear that there are both cultural and gender issues that have an impact on self-determination (Deci et al., 2001; Wehmeyer et al., 2011). In cultures that are collectivist, self-determination is both conceptualized and exercised in a different manner than in societies that focus on the individual. Additionally, it is now acknowledged that the environment, all too often, offers different opportunities for self-determination to males than females (Schunk & Zimmerman, 2012; Trainor, 2007). Over time, we have learned that self-determination has an important impact on a variety of areas of life including post-school outcomes, employment, and community participation (Abery et al., 2019; Shogren, Wehmeyer, Palmer, Rifenbark, & Little, 2015; Test, et al., 2009).

Self-Determination in Education and Community Services

As a more in-depth understanding of self-determination has developed, support of the capacities that facilitate it as well as its exercise have been enhanced. Wehmeyer, Shogren, and their colleagues have developed and field-tested the Self-Determined Learning Model of Instruction designed to promote the self-determination of secondary students and support them to become self-regulated problem-solvers (Shogren, Plotner, Palmer, Wehmeyer, & Paek, 2014; Wehmeyer et al., 2012). Palmer focused on developing approaches to teach capacities supportive of self-determination to early elementary school students (Palmer & Wehmeyer, 2003). Further work in education has resulted in the development of numerous guides for teachers focused on supporting the acquisition a of self-determination capacities (Cabeza, et al., 2017; Lind, Poppen, & Murray, 2017; Loman, Vatland, Strickland-Cohen, Horner, & Walker, 2010) and how the use of technology can support self-determined outcomes (Van Laarhoven-Myers, Van Laarhoven, Smith, Johnson, & Olson, 2016).

Work at the University of Minnesota’s Institute on Community Integration has been based on an ecological perspective. As result, it has focused on supporting parents (Abery, Tichá, Kincaid, & Smith, 2018), direct support workers (Abery, Tichá, Smith, Berlin & Welshons, 2015), and teachers (Shinde, Abery & Tichá, 2019) to better facilitate the self-determination of children, youth, and adults with intellectual and other developmental disabilities. A similar approach, focusing on ensuring that people with disabilities have the social capital needed to maximize their self-determination, has been taken by Blanck and Martinis (2015) in development of the processes underlying supported decision-making.

Conclusion

When the nature of self-determination was first explored 30 years ago, one could not predict how quickly it would evolve. As we look at it today, those of us who witnessed its birth and observed it becoming an important part of the disability rights movement had little understanding of the role it would play in supporting people with disabilities to effectively exercise their right to control their own lives. Similar to parents who have raised their children from infancy to adulthood, and then launched them into the world, we hope in the future that we will see further growth and development related to our understanding of self-determination and its application to enriching the lives of people with disabilities.