Collaborating with adults labelled/with intellectual disability to create disability support staff training materials

Abstract

Historically, people labelled/with intellectual disability in Canada have received institutionalized forms of care in which they were mistreated, abused, and controlled (Seth et al., 2015; Spagnuolo & Earle, 2017). Today, many people labelled/with intellectual disabilities live within the community and instead receive support from disability support workers in various settings, including within smaller-scale institutions such as group homes, supported independent living arrangements. In some instances, such settings continue to provide institutionalized forms of care (Spagnuolo & Earle, 2017). They may also be in receipt of disability support through involvement with various other community services, including education, employment and recreation. While this shift away from large-scale institutionalization has generally granted a greater level of autonomy for those so labelled than there was previously, the power differential between disability support staff and people labelled/with intellectual disability is such that many problematic support dynamics persist (Sagnuolo & Earle, 2017; Robinson et al., 2022; Antaki et al., 2007). This qualitive co-production project aimed to learn more about what people labelled/with intellectual disability wanted disability support staff to know about the provision of support and did so using a series of focus groups and individual interviews with a participatory component: the co-creation of a series infographics for training of support staff. Thematic analysis revealed two major themes in my data. The first, the ways that support was too often unhelpful or harmful, I broke down into three subthemes: variable treatment, assumptions of (in)capability, and directing or doing for participants leading to neglect of opportunities for skill development. My second theme described what the participants wanted to see from support instead, which also had three sub-themes: respect for boundaries, kind and compassionate treatment, and respect for individuality. My findings and the co-created infographics emphasized the importance of respecting the knowledge that people labelled/with intellectual disabilities have about their own needs, challenging social workers and other professionals to reflect upon their self-perceptions as experts.