More Than Meets the Eye:  Relational Autonomy and Decision-Making by Adults With Developmental Disabilities

Negotiating Research Participant Consent With, for and by Adults With Developmental Disabilities in Interaction With Their Third-Party Consent Providers

“…Of course, interview-observations occupied blocks of time in participants’ schedules and, in this sense, had an obligatory quality of something needing to be completed if not at the scheduled time, then at a future date. Indeed, parents of adults with developmental disabilities have often led lives of juggling appointments, therapies and activities for their sons and daughters (e.g., Mooney & Lashewicz, 2014; Salami & Lashewicz, 2015). Further, the playing out of parenting goals and strategies in interaction with one’s adult child with a developmental disability fit well as part of the relational data, we aimed to collect and we found support for conclusions by Lloyd et al (2006) and Nonnemacher (2008) that parents are key to facilitating the comfort and confidence of people with developmental disabilities.…”

“…On the other hand, adults with developmental disabilities may be rendered compliant amidst family interactions (e.g., Pascall & Hendey, 2004; Power, 2008). Indeed, we (e.g., Salami & Lashewicz, 2015) have reported self-expression by adults with developmental disabilities as both supported and hindered by family members who provided encouragement to, yet sometimes spoke over and spoke for, adults with developmental disabilities. Moreover, these workings of family member influence on self-expression by adults with developmental disabilities are playing out in a context which, Poland and Pederson (1998) remind us, carries a requirement that participants—in our case, adults with developmental disabilities and their support providing family members—engage in some form of public self-analysis as part of research data collection.…”

Theorising the role of community practitioners supporting young men with mild to borderline intellectual functioning in re-entry

“…Recent empirical studies in the area of substance abuse interventions with persons who have MBIF found that not only is it possible but it is necessary to balance patient autonomy and self-determination with interdependencies through relationships that become both means and ends to individuals governing their own lives (Pols et al, 2017). Related to this have been studies that reinforce that in working with persons experiencing disability, the role of practitioners and care-givers is to enact networks and infrastructure which enable relational autonomy for their clients (Salami and Lashewiez, 2015).…”