“Help me to decide”: A study of human rights-based supported decision making with persons with intellectual disabilities.

Abstract

Decision making is the basis for individual autonomy and societal participation. To support persons' human right to make life decisions, the model of supported decision making (SDM) has evolved and complies with Article 12 of the United Nations Convention on the Human Rights of Persons with Disabilities. Models for implementing SDM and outcomes achieved by applying SDM in community settings remain insufficiently explored. This study used a human rights perspective with participatory, qualitative research methods to investigate environmental conditions and social support measures that enabled persons with intellectual disabilities (ID) to make and implement their own decisions. Data gathered were 6 months of field notes about implementing SDM in a L'Arche day activity program with 26 adults with ID, with opinions and drawings illustrating persons' decision making. All data were analyzed thematically. As a result of using the SDM intervention, persons with ID became more expressive, able to discuss and debate options, participated in organizational and municipal decision making, and expressed "joy" and feeling "more like a human." Staff supporters found SDM fulfilling and noticed it increased the sense of ownership persons with ID experienced in individual and group meetings. An organizational environment that respects human dignity, supports sustained relationships between persons with ID and decision supporters, individualizes SDM depending on how persons can communicate, and encourages staff self-reflection about prejudices and positionality is essential for implementing SDM with persons with ID. SDM processes shift oppressive social narratives and policies in the direction of a social, relational model of the decision-making capacities and competencies of persons with ID. Public Policy Relevance StatementThe United Nations Convention on the Human Rights of Persons with Disabilities mandates supported decision making (SDM) to actualize social participation of persons with intellectual disabilities (ID). Legislation needs to replace substitute decision making with SDM. Social service organizations need to implement SDM with persons with ID and their families. Research with persons with ID needs to include priorities of persons with ID and This article was published Online First March 21, 2024.