Substitute decision-making for adults with intellectual disabilities living in residential care: learning through experience

Abstract

In the UK, current policies and services for people with mental disorders, including those with intellectual disabilities (ID), presume that these men and women can, do, and should, make decisions for themselves. The new Mental Capacity Act (England and Wales) 2005 (MCA) sets this presumption into statute, and codifies how decisions relating to health and welfare should be made for those adults judged unable to make one or more such decisions autonomously. The MCA uses a procedural checklist to guide this process of substitute decision-making. The personal experiences of providing direct support to seven men and women with ID living in residential care, however, showed that substitute decision-making took two forms, depending on the type of decision to be made. The first process, 'strategic substitute decision-making', paralleled the MCA's legal and ethical framework, whilst the second process, 'relational substitute decision-making', was markedly different from these statutory procedures. In this setting, 'relational substitute decision-making' underpinned everyday personal and social interventions connected with residents' daily living, and was situated within a framework of interpersonal and interdependent care relationships. The implications of these findings for residential services and the implementation of the MCA are discussed.