Impact Feature Issue on Self-Determination and Supported Decision-Making for People with Intellectual, Developmental, and Other Disabilities
Self-Determination Research: Two Decades of Progress in Québec
In the late 1990s, our first research work was devoted to introducing the concept of self-determination in Quebec (as well as in some regions of France, Belgium and Switzerland) and translating and validating a scale for measuring self-determination. Subsequent work has resulted in the development of educational materials to support students with intellectual disability in their transition from school to adult life, the creation and integration of the concept of technologies to support self-determination, and the establishment of a research chair on technologies to support self-determination. Within these two decades, research related to self-determination has had several concrete benefits for individuals and their families. Without being exhaustive, here are some examples:
- Integration of self-determination into Quebec's special education policy for children with intellectual disability.
- Work bringing together people with intellectual disability as well as leaders, stakeholders and researchers who made it possible to create and endorse the Charter for Inclusive Technologies (#ITC2016, 2016) and a five-year action plan (2017-2022) in 2017.
- The inclusion of the self-determination construct in several departmental policies and mission statements of organizations providing services to these individuals.
- Appropriation of this construct and change in attitudes by some people and groups of people with intellectual disability, which results in a feeling of exercising more power in their lives.
At the conceptual level, the functional model of self-determination quickly found its way into our field. However, most settings have retained only the overall picture and its great utility in identifying the personal and environmental factors that facilitate or hinder the occurrence of self-determined behaviors. Thus, many of them have gradually come to confuse decision-making or choice-making with self-determination. The definitions and specificities of the elements that make up self-determination have been overlooked. Another important limitation concerns the evaluation of this construct. The scarcity of instruments to measure it as a whole, combined with the fact that the results are far too vague, does not make it possible to demonstrate in a satisfactory and specific way the impacts of the interventions implemented. For example, the use of the LARIDI scale (Wehmeyer, Lachapelle, Boisvert, Leclerc, & Morrissette, 2001) does not measure the impact of an intervention on a person's self-determination in relation to the use of transportation or technology to perform work-related tasks. Finally, self-determination is a construct that is still too abstract to allow people to self-appropriate it in their daily lives.
Despite the enthusiasm generated by the introduction of this construct and the many works carried out, much remains to be done! We believe that future work should focus on the following:
- Develop a conceptual/practical model illustrating the interactions between the conceptual, personal, and environmental factors involved in the development of self-determined behaviors.
- Develop more accurate measurement tools to accurately assess self-determination in more specific areas.
- Think about and position self-determination in a new society that differs from the one in which it was developed, namely the digital society. This is imperative in order to avoid or at least limit the digital exclusion of people with disability.
Inclusive Technology Charter (#ITC2016). (2016). Trois-Rivières, Québec: Document produced by the Centre de partage d’expertise en intervention technoclinique and the Institut universitaire en déficience intellectuelle et en trouble du spectre de l’autisme, in association with CIUSSS de la Mauricie-et-du-Centre-du-Québec on the occasion of the 15th Rendezvous de l’IU en DI et en TSA.
Wehmeyer, M. L., Lachapelle, Y., Boisvert, D., Leclerc, D., & Morrissette, R. (2001). L’Échelle d’autodétermination - version pour adulte. Trois-Rivières: LARIDI.