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

“Self-determination” has different meanings and manifestations for people living in different parts of the world and in diverse cultural contexts. Self-determination is largely an outcome of Western thinking, in which having choice and control have been viewed as critical elements of living a self-determined life (Wehmeyer, 2004; Leake, 2012; Wehmeyer & Abery, 2013). In Western societies – including the United States, Canada, Western Europe, Australia, and New Zealand –  families of people with disabilities and people with disabilities themselves have advocated for their needs, rights, and dreams to live as equal members of the community. In societies of the Eastern and Southern hemispheres, individual rights have not been emphasized and exercised in the same way until quite recently with the adoption of the United Nations Convention on the Rights of Persons with Disabilities (CRPD; United Nations, 2006) by state and local governments.

The CRPD includes several Articles that affirm the rights of people with disabilities to live independently and be included in the community (Article 19), work and be employed (Article 27), and be equally recognized before the law (Article 12). As a result, people with disabilities in countries such as Armenia, Russian Federation, Kazakhstan, Tanzania, and Kenya have begun to exercise self-determination in their lives, including in education, healthcare, employment, and other areas. The CRPD has become a key guiding and protective document of the rights of people with disabilities internationally, signifying a critical milestone in promoting and protecting the rights of people with disabilities worldwide. Societies still, however, vary in the level of adoption of the CRPD, including in enforcing the individual Articles, which in turn affects the way changes in attitudes toward persons with disabilities take place. 

Self-determination can be defined as exercising the degree of control over one’s life that one desires, within those areas of life that are important to the person (Abery & Stancliffe, 2003; Wehmeyer & Abery, 2013). It exists in the context of one’s environment and relationships. The environment has many layers, from societal laws and rules, cultural expectations, attitudes and values, and political structures, to media reporting, and service and supply systems. Moreover, people can be self-determined only in the context of relationships (e.g., with a family member, friend, teacher, neighbor, healthcare professional) rather than in isolation. Environmental factors and relationships influence the ways in which we exercise and advocate for our rights. For example, if a person with intellectual and developmental disabilities lives in a country where the laws and media do not encourage and support the employment of persons with disabilities, it will take more effort to exercise one’s self-determination to get a job. Similarly, if the family members and teachers do not believe that a child with a disability should make their own decisions, even if they are able to communicate, it will be more challenging for the person with a disability to make their own decisions about what they want to learn and how to utilize their knowledge. In contrast, in societies that have legal, educational, and employment structures in place for people with intellectual and developmental disabilities to have access to inclusive education and employment opportunities, and where the attitudes toward people with disabilities are supportive of the laws and structures, self-determination is more likely to be exercised, and subsequently lead to better outcomes. 

Societal barriers to exercising one’s rights and self-determination are changing in countries and cultures in which people with disabilities have historically faced long-lasting barriers

Even though differences still exist among countries and cultures in being able to exercise one’s self-determination, there have been positive changes as a result of the increase in flow of information via media and global travel. Societal barriers to exercising one’s rights and self-determination are changing in countries and cultures in which people with disabilities have historically faced long-lasting barriers. There are, however, still differences in the evolution of countries’ legal approaches toward guardianship and Supported Decision-Making (SDM).

Supported Decision-Making is a strategy that is much more recent, compared to the broader concept of self-determination. As a legal alternative to substitute decision-making (i.e., guardianship), SDM has been established and used only in a handful of countries. It is a process that provides a person with a disability with the necessary assistance to exercise their equal rights recognized before the law (Article 12 of the CRPD). Internationally, the CRPD has been an important driver behind the change in disability law, demanding a shift from a substitute to a SDM model (Dinerstein, 2012; McSherry, 2012; Minkowitz, 2012). The CRPD recognizes that there are times when persons may require support in making decisions and that, depending on the disability, varying levels of support may be needed for the person to be able exercise their rights  (Dinerstein, 2012). There are several countries that have developed models that implement SDM, though they may not have completely replaced the substitute decision-making model (Boundy & Fleischner, 2013). For example, in Canada, British Columbia has adopted a model that presumes the capacity of persons with an intellectual disability, in which a person with a disability can enter into a representative agreement with a person whom they trust to be able to make their choices and decisions with the level of support they desire. The substitute decision model also still exists in Canada. Unlike in the U.S. and Canada, in Sweden the guardianship system does not exist and instead, persons with disabilities are offered a court-appointed legal mentor or an administrator to assist the person in making choices and decisions following their “best interest.” Similar movements have occurred in other developed countries, including Australia, Germany, and Norway. In contrast, there are many countries in the Southern and Eastern hemispheres (e.g., Bulgaria, Russian Federation, Ukraine) that still have disempowering guardianship rules and are slowly striving toward the principles of the CRPD and human rights for all.

When supporting the self-determination of persons with disabilities across different cultures and countries, it is critical that we work within the ecological framework to understand the different layers of society, community, and family as well as the individual himself or herself, and utilize an approach to self-determination that is sensitive to the circumstances, needs, and dreams of the person concerned. International collaborations are needed in order to share the concept and practical applications of SDM and other approaches to supporting individual self-determination with people with disabilities and their families in countries that are just at the beginnings of this important journey.