Beyond Custodial Care: Mediating Choice and Participation for Adults With Intellectual Disabilities

Johnson, Khalilah Robinson; Bagatell, Nancy
Journal of Occupational Science

Occupational scientists posit that choosing and participating in occupation contributes to overall health and well-being. Yet institutionalized adults with intellectual disabilities (ID), a disability community with a long history of enduring grave injustices, continue to face barriers to self-determined participation. This paper draws on data from an institutional ethnographic study aimed to make visible the inter-relational ways national, state, and local policies mediate the possibilities to choose and participate in occupations for adults with ID. To explore the impact of state-mandated policies, data were collected in an intermediate care facility. Participants included seven adults diagnosed with profound ID and eight staff members. Participant observation, ethnographic interviews, and organizational texts (e.g., national and state mandates, and policies and procedures) were the main sources of data. Conceptual mapping was employed as an analytic process to connect participants' narratives back to the policies that coordinated their work in the facility. Analyses revealed that the policies guiding the provision of habilitative programming created a systematic regulation of participation in occupations of residents' and staff's choosing. More specifically, analyses demonstrated how policies placed greater value on routinization and efficiency over self-determined participation. These findings highlight the lack of opportunities for residents and staff to incorporate occupations of their choosing into the fabric of daily living in an institutional setting. Additionally, they call attention to the ways institutional routinization is a perpetuation of the historical notions of what adults with ID should do.