The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) was the first legally binding instrument explicitly focused on how human rights apply to people with disability. Amongst their obligations, consistent with the social model of disability, the Convention requires signatory nations to recognise that “…persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life” and mandates signatory nations to develop “…appropriate measures to provide access by persons with disability to the support they may require in exercising their legal capacity”. The Convention promotes supported decision-making as one such measure. Although Australia ratified the UNCRPD in 2008, it retains an interpretative declaration in relation to Article 12 (2, 3, 4), allowing for the use of substituted decision-making in situations where a person is assessed as having no or limited decision-making capacity. Such an outcome is common for people with severe or profound intellectual disability because the assessments they are subjected to are focused on their cognition and generally fail to take into account the interdependent nature of human decision-making. This paper argues that Australia’s interpretative declaration is not in the spirit of the Convention nor the social model of disability on which it is based. It starts from the premise that the intention of Article 12 is to be inclusive of all signatory nations’ citizens, including those with severe or profound cognitive disability. From this premise, arises a practical need to understand how supported decision-making can be used with this group. Drawing from evidence from an empirical study with five people with severe or profound intellectual disability, this paper provides a rare glimpse on what supported decision-making can look like for people with severe or profound intellectual disability. Additionally, it describes the importance of supporters having positive assumptions of decision-making capacity as a factor affecting supported decision-making. This commentary aims to give a focus for practice and policy efforts for ensuring people with severe or profound cognitive disability receive appropriate support in decision-making, a clear obligation of signatory nations of the UNCRPD. A focus on changing supporter attitudes rather than placing the onus of change on people with disability is consistent with the social model of disability, a key driver of the UNCRPD.

Background: The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) promotes the use of supported decision making in lieu of substitute decision making. To date, there has been a lack of focus on supported decision making for people with severe or profound intellectual disability, including for end of life decisions.Methods: Five people with severe or profound intellectual disability's experiences of supported decision making were examined. This article is particularly focused on one participant's experiences at the end of his life.Results: All five case studies identified that supporters were most effective in providing decision‐making support for participants when they were relationally close to the person and had knowledge of the person's life story, particularly in relation to events that demonstrated preference.Conclusions: Findings from this study provide new understandings of supported decision making for people with severe or profound intellectual disability and have particular relevance for supporting decision making at the end of life.

Supported decision-making is at the forefront of modern disability research. This is due to Article 12 of the Convention on the Rights of Persons with Disabilities (CRPD), which creates a state obligation to provide support for the exercise of legal capacity. This turned the practice of supported decision-making into a human rights imperative. Government and funding agencies are increasingly focusing their attention on the area. Researchers are similarly increasing their interest in the field. The impending danger is that the rush of interest in the area will overshadow the original intention of supported decision-making: to ensure that people with cognitive disability are provided with the freedom and the tools to participate as equal citizens and for every individual to be free to direct their own life. This article explores the theoretical foundations of supported decision-making and the evolution of supported decision-making research. It explains the research that is emerging in leading jurisdictions, the United States and Australia, and its potential to transform disability services and laws related to decision-making. Finally, it identifies areas of concern in the direction of such research and provides recommendations for ensuring that supported decision-making remains protective of the rights, will and preferences of people with cognitive disability.

Despite a proliferation of qualitative research methods and the advancement of augmentative and alternative communication (AAC), people with Complex Communication (Access) Needs (CCAN) are often absent from sociological study cohorts. Proxy interviewing is common but it leaves viewpoints to be shaped by others. Herein the purpose of the study was to develop and test new methods of data collection that would improve access to research participation for people with CCAN. This article reports on the development, implementation and evaluation findings of four data collection techniques. These methods, ‘theory generated photo elicitation’ ‘adapted image selection’ ‘participant sensory selection’ and ‘sensory ethnography’ were tested and implemented in a study of people with CCAN. The study contributes to the knowledge of communication accessible research participation with applicable to disability-based qualitative research across multiple fields.

People with disability have demanded the recognition of full legal personhood in order to realise their rights and to overcome dominance and oppression. Legal personhood is also being claimed for similar reasons for natural entities, including rivers, forests, and mountains. However, the prevailing neo-liberal understanding of legal personhood relies on the individual exercising personhood independently. This may not be enough to secure the interests and realise the rights of people with disability, natural entities, or other cohorts that are not experiencing a wealth of power and privilege. In this article, we attempt to overcome centuries of (white, able-bodied, cis gender) male centric theory of legal personhood. We reject the dominant conceptions of personhood from liberal political theory that emphasise an atomistic, isolated individual making independent decisions. Instead, we argue for a different conception of legal personhood – relational personhood. We use insights from feminist theories of relational autonomy as well as the experience of disability to help us re-conceptualise personhood to embrace exercising autonomy through a collaborative process of acknowledging, interpreting and acting on an individual’s expressions of will and preference. We then apply this new conception to the recognition of legal personhood in nature and explore how natural entities can exercise their personhood via their relationships with humans – and, in particular, Indigenous Peoples, who have developed close relationships with natural entities over centuries. Our aim is to demonstrate the utility of a conception of legal personhood that encompass the reality of the interdependence of all individuals and entities.

With a focus on the use of narrative approaches, this article is a commentary on decision-making support for people with profound intellectual and multiple disability (PIMD) at the end-of-life. Due to improved health care, people with PIMD are living longer lives than ever before. Therefore, they are increasingly facing decisions relating to end-of-life care and planning. Despite the increased attention that has been given to end-of-life planning, opportunities to have preferences responded to at the end-of-life are more likely afforded to people considered to have cognitive and decision-making capacity. Those supporting people with PIMD to plan for and make decisions about end-of-life care face several challenges. These challenges are rooted in difficulties with communication exchange between people with PIMD and their communication partners, leading to a widely held perception of decision-making incompetence for this population. In response to this challenge, this article draws on empirical research to discuss decision-making support within the context of palliative care and advance care planning, specifically for people with PIMD. It promotes decision-making support as an approach to assist supporters of people with PIMD to allow those people’s expressions of preferences to be acknowledged and acted upon at the end-of-life. The use of narrative is presented and discussed as a tool for enabling this responsiveness, specifically within the context of end-of-life planning.