Decision making by people with intellectual disabilities. A review of the literature

Abstract

The right of people with intellectual disabilities to make decisions remains controversial despite the policy turn towards support promoted by the Convention on the Rights of Persons with Disabilities (CRPD) (United Nations, 2006). Supported decision making is an alternative model to substitute decision making, shifting the focus from the assumption of incapacity to the provision of individualised support to exercise this right. Despite the centrality of decision making for the development and implementation of policy and legislation, there is limited understanding of the experiences of people with intellectual disabilities and of persons supporting them. A literature review was conducted to understand these experiences and perspectives. A systematic search from 2000 to 2023 identified a total of 33 articles that were examined through reflexive thematic analysis and adopting an inclusive research approach. The review reveals the experiences of people with intellectual disabilities making day‑to‑day decisions and more long‑term decisions. Trusted relationships with family and staff who provide support are critical to enable decision making, however, numerous restrictions to decision making have been reported. Open dialogue, accessible information, knowing the person with disability well, responsiveness to their wills and preferences, advocating for their rights, providing learning experiences, using planning tools, and having a shared vision for the person as capable of making their own decisions are presented as enablers of decision making. Support can be adapted to enable people with intellectual disabilities to have control over their decisions. Careful examination of the more systemic restrictions imposed on and internalised by people with disabilities—a form of substituted decision‑making—resulting from a still prevalent protection and «best interest» approach is required to protect people’s rights to make decisions.