Self-Determination for Individuals with the Most Severe Disabilities: Moving beyond Chimera

Abstract

Individuals with the most severe disabilities may be unsuccessful in effecting changes in their environment for various reasons. Because of limitations in cognitive and expressive language skills, their attempts at communicating may be overlooked or misunderstood, or may be knowingly or inadvertently obstructed. Consequently, self-determination is often dependent on our interpretation of what people with the most severe disabilities are communicating. This article explores the implications of making interpretations, the need for such interpretations, and the dangers. Current progress in supporting and promoting self-determination are acknowledged. It is suggested that although these procedures may be intended to increase self-determination, they do not automatically do so. In fact, they may function to limit self-determination. Strategies and methodologies must be critically evaluated to ensure that such efforts reflect the tenets and spirit of self-determination.

Living with support in the community: Predictors of choice and self‐determination

“…These assessments typically provide limited choice confined to tangible, here-and-now choices ], although Parsons et al [1997] have extended the procedures to incorporate photographs of choice alternatives. Brown et al [1998] remarked that the findings of preference assessments might not necessarily enhance self-determination. Providing free and frequent access to preferred items and activities may boost self-determination, but making access contingent on criteria specified by others is a form of external control, not self-determination.…”

‘It’s my home and your work’: the views of a filmed vignette describing a challenging everyday situation from the perspective of people with intellectual disabilities

“…Furthermore, staff seem to have a selective view of their interactions with people with intellectual disabilities; that is, certain communications are rewarded with attention, while others are ignored. Brown, Gothelf, Guess, & Lehr, (1998) stressed that, rather than command and enforce obedience in their interactions with people with intellectual disabilities, staff should make it their goal in the interaction to expand their understanding of the desires of the users and, through that, increase opportunities for real choice for people with intellectual disabilities. In this study, it becomes obvious that the participants wish to say no, but that they are, over the years, “disciplined” to say “yes and to be obedient and kind”.…”

“…This is probably the key in regard to how staff exert power and use their positions, possibly without even realizing that they are doing this. Instead, people with intellectual disabilities could be empowered, and professionals could view them as competent communication partners and respect their competence and autonomy (e.g., Brown et al, 1998). …”

Parent Perceptions of Time Spent Meaningfully by Young Adults With Pervasive Support Needs

“…Understanding what parents and guardians of this population of young adults view as meaningful is critical for improvements in the transition process and post-school outcomes (Henninger & Taylor, 2014). As well, parents and guardians interpret the preferences of their sons and daughters with pervasive support needs (Brown, Gothelf, Guess & Lehr, 1998), which is a necessary support for self-determination during transition and adulthood.…”