Full bibliography

This article critically assesses the systems that structure unpaid care work for people with intellectual disabilities, with a focus on the role of siblings. We provide a preliminary analysis of this current trend in unpaid care work in the province of Ontario, Canada, addressing practices that are a) built upon a devaluation of people with intellectual disabilities, and that b) deny them choice in who provides them care. We combine existing evidence with relevant survey data to assess the risks associated with what we characterize as coercive care, as well as the many tensions that arise between self-advocacy and family-led advocacy initiatives. We interrogate the assumption that the role of siblings, and women in particular, is to take over unpaid care roles from parents. We also suggest how the current socioeconomic context of many individuals and families can limit opportunities for adopting potential solutions and propose practical avenues for future research. Throughout our analysis, we centre questions of agency and self-direction, pointing to the clash of values and inequitable outcomes that makes dominant support arrangements untenable. We conclude by drawing an ideal scenario of the publicly funded supports and services to which people with intellectual disabilities should be entitled and outline the many implications attached to this proposed model.