Making decisions is an important component of everyday living, and issues surrounding autonomy and self-determination are crucial for persons with intellectual disabilities. Article 12 (Equal Recognition before the Law) of the UN Convention on the Rights of Persons with Disabilities addresses this issue of decision-making for persons with disabilities: the recognition of legal capacity. Legal capacity means recognizing the right to make decisions for oneself. Article 12 is also moving in the direction of supported decision-making, as an alternative to substituted (...) decision-making. The objective of this paper is to show conceptually the connection between supported decisionmaking and the preservation of personal autonomy for persons with intellectual disabilities. This paper discusses supported decision-making based on Bach and Kerzner's model: (a) legally independent status, (b) supported decision- making status, and (c) facilitated decision-making status. Arguments will be made based on John Stuart Mill's concept of autonomy and arguments against it using Sarah Conly's argument for paternalism. (shrink)

Patient-centred communication is widely regarded as a best practice in contemporary medical care, both in terms of maximising health outcomes and respecting persons. However, not all patients communicate in ways that are easily understood by clinicians and other healthcare professionals. This is especially so for patients with non-speaking intellectual disabilities. We argue that assumptions about intellectual disability—including those in diagnostic criteria, providers’ implicit attitudes and master narratives of disability—negatively affect communicative approaches towards intellectually disabled patients.Non-speakingintellectually disabled patients may also be (...) taken to lack decision-making capacity and resultingly, may be given very little role in determining their care. But, given evidence of the heterogeneous communicative practices available to non-speaking patients, efforts should be made to extend patient-centred communication to them. We offer four suggestions for doing so: (1) treating those with non-speaking intellectual disabilities as potential communicators; (2) lengthening appointment times to develop relationships necessary for communication; (3) disentangling capacity from communication in concept and in practice; and (4) recognising the bidirectional connection between supported decision-making and patient-centred communication. (shrink)

This paper critically examines whether patients with severe brain injury, who can only communicate through assistive neuroimaging technologies, may permissibly participate in medical decisions. We examine this issue in the context of a unique case study from the Brain and Mind Institute at the University of Western Ontario. First, we describe how the standard approach to medical decision making might problematically exclude patients with communication impairments secondary to severe brain injury. Second, we present a modified approach to medical decision making. (...) We argue that this approach might warrant the inclusion of some patients with severe brain injury in low-stakes decisions, or to express preferences. Third, we present a model of supported decision making to address recalcitrant uncertainty. We conclude by suggesting that the modified approach to decision making and supported decision making might allow a patient with severe brain injury to participate in some medical decisions. Our analysis is provisional and has not yet been implemented in practice. Our discussion is intended to generate further debate on approaches to enhancing autonomy in patients with profound motor and cognitive impairments. (shrink)