Research

Honouring the requirement of the Convention on the Rights of Persons with Disabilities to introduce supported decision-making poses many challenges. Not least of those challenges is in writing laws and devising policies which facilitate access to formal and informal supports for large numbers of citizens requiring assistance with day-to-day issues such as dealing with welfare agencies, managing income security payments, or making health care decisions.

The UNCRPD has generated debate about supported decision making as a way to better enable people with cognitive disability to participate in decision making. In Australia, between 2010–2015, a series of projects have piloted various models of delivering decision making support.

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.

Despite the evolution of inclusive research and augmentative and alternative communication, there is an ongoing absence of people with intellectual disabilities and complex communication (access) needs from sociological cohorts. In an in-depth study of 10 individuals with complex communication access needs, the involvement of three participants with intellectual disabilities was highlighted. The purpose of this article is to describe how the investigation was conceptualised, designed, and adapted to maximise the participation of adults with intellectual disabilities and complex communication access needs.

This article aims to help readers to understand the conceptual link between supported decision making and legal capacity and how this is influencing the development of practice. It examines how the concept has been defined as: a process of supporting a person with decision making; a system that affords legal status; and a means of bringing a person’s will and preference to the centre of any substituted decision-making process. The conceptual link between supported decision making and legal capacity is explored by outlining three conceptualisations that are influencing the development of practice.

The principles of the NDIS Act, and the associated principles in the Nominee Rules (see the draft attached to this document), are sound principles that uphold the rights of participants. The draft legislation requires that participants are to be involved in decisions that affect them, including making decisions for themselves, to the extent possible. The draft rules require a presumption of decision making capacity, and that nominees will only be appointed when it is not possible for a person to be assisted to make decisions for themselves. This analysis suggests further division of the roles of nominees that occurs up front, as a way of maximising the opportunity for people with a disability to make decisions and gain personal authority in their lives through participation in the NDIS.

This study aimed to understand the experiences of family members and disability support workers in providing support to adults with intellectual disability in Victoria, Australia. Twenty-three people drawn from these two groups participated in individual or focus group interviews. This study identified some of the challenges and practical strategies for providing decision support that can be used to inform practice and capacity building resources for supporters. Three major themes emerged from inductive thematic analysis: their ideas about decision support, approaches to support, and challenges they faced.

This evaluation report is in several parts. It provides background to the project. It includes a section on findings from the evaluation, with particular attention given to the experience of the project participants and their supporters. The report includes four stories from people with disabilities who were participants in the project. It also includes a section on issues to consider in the further development of Supported Decision Making in South Australia.

This report will reconsider the Stepped Model of Supported and Substitute Decision Making, the supported decision-making approach used in the South Australian Project, and the results of that project. This summary in this year’s Annual Report seeks to bring together this information.

This  paper offers insights on the concepts of temporal scales and boundaries as aspects of the so-called ‘structural features’ of time and temporality (Adam, 2000; Schwanen & Kwan, 2012) and demonstrates the significance of these in the construction of identities, self-determination and the exercise of power in decision-making processes.

This article explores key debates across disciplines and draws on grounded theory fieldwork findings to bring greater clarity to the principle within law, policy and practice settings. It is argued that the principle calls for a nuanced understanding which cautions against expectations that mere enactment into law or adoption within programs of support will prove to be a panacea.

The purpose of this paper is to develop an understanding of the concept of support for decision making in the NDIS. The paper will provide the basis of advice to the NDIA Board in relation to the development and implementation of a consistent approach for support for decision making that meets the Scheme obligations and aspirations to provide real choice for people with disability. Supported decision making starts from the premise that everyone has the right to participate in decision making and everyone draws on some support at some time to make some decisions.

This article will examine how the notion of choice and control has been operationalized within the NDIS framework and critically analyse this against the requirements of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) adopted in 2006. It will demonstrate that whilst the NDIS seeks to promote individual autonomy and champion the provision of support, it still permits a substituted decision-making model for the exercise of legal capacity via the appointment of nominees.

This paper details a research program whereby an evidence-based Support for Decision Making Practice Framework has been developed for those who support people with cognitive disabilities to make their own decisions across life domains.

This document complements the ‘Consultation Paper: Supporting you to make your own decisions’ that was released for public consultation on 21st June 2021. This document was developed based on input from a range of stakeholders.

This report is about a new policy for Supported Decision making.

The National Disability Insurance Agency is developing a Support for Decision Making policy. Consultation sessions were held through an online survey and written submissions during a 12-week consultation period held between 21 June and 10 September 2021. This report provides a summary of the feedback received from people with a disability, families, carers, disability representative organisations, service providers, government departments, academics and health professionals.

The National Disability Insurance Agency (NDIA) released their ‘Supporting you to make your own decisions’ consultation paper in June 2021. Inclusion Australia’s response includes feedback on the Paper, recommendations for the NDIS Support for Decision Making policy and case studies to help the NDIA better understand the lived experiences of decision makers and their supporters.

This Easy Read report is a summary of a report called Convention on the Rights of Persons with Disabilities: Shining a light on Social Transformation.

This paper provides advice to the NDIA Board as to an approach to assist participants, their families and carers to develop strategies for their personal safety to enable them to live a full life safely. The rights based framework of the NDIS Quality and Safeguarding Framework defines safeguards as actions designed to protect the rights of people to be safe from the risk of harm, abuse and neglect while maximising the choice and control they have over their lives. This definition was further clarified by the WA Disability Services Commission describing safeguards as supports and mechanisms that promote, enhance and protect an individual’s human rights, decision making, choice and control, safety and wellbeing, citizenship and quality of life.

The National Resource Centre for Circles of Support and Microboards NRC COSAM engaged a number of Australian organisations experienced in developing and maintaining Circles of Support and/or Microboards as partners and contributors. The individual and collective experience of these organisations, the people they support, their families and Circle/Microboard members provided important information for the collation and development of resources, and in the provision of information for this research.

These analyses confirm statistically the holistic nature of wellbeing for Aboriginal people in remote Australia, and the importance of culture, empowerment and community to government priority areas of education, work, health and wellbeing. The evidence reported here demonstrates that all of these factors interplay through both direct and indirect relationships. They all interrelate -they all influence one another and exist as one entity. This research aims to statistically validate the holistic Interplay Wellbeing Framework and Survey that bring together Aboriginal-identified priorities of culture, empowerment and community with government priorities including education, employment and health.

The CREATE Ability Project (TAP2) aimed to empower young people with disability in or leaving the care of the Minister to transition to independence and promote supported decision-making through participation in workshops and camps, underpinned by education grounded in human rights principles. This evaluation identified the effectiveness of TAP2 in building young people’s capacity to understand and implement supported decision-making. It assessed whether over time their understanding of supported decision-making principles improved, and considered which aspects of the project contributed to promoting these principles of decision-making.

A scoping review of initiatives to support the inclusion of people with intellectual disability in civic and social activities. The aim of this scoping study was to map key concepts underpinning interventions to include people with intellectual disability in their local community, and the main sources and types of evidence available.

The aim of this research was to investigate the lived experiences of belonging and felt exclusion for young people with intellectual disability living in regional (small town) communities. This article focuses on the findings from the project about how the young people’s experiences of connections to place, space and people influenced their felt sense of belonging and exclusion, and from this, implications for developing social policy which is more responsive to their priorities and lived experience.

The Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability (Royal Commission) wants to know what could be done to change attitudes towards people with disability so that they are better included in society. The research found evidence about interventions to change attitudes, behaviours and outcomes. The three concepts are linked and are measures that indicate the social inclusion of people with disability. Social inclusion is an indicator of equality from the human rights of people with disability.

This article presents research about relationships between young people with cognitive disability and their support workers. Specifically, it, uncovers the spaces and times (space-times) within, and mobilities between, disability programme sites, which are commonly understood as inevitable but not necessarily productive or useful.

The context in which paid support relationships are experienced is rapidly changing in Australia with the introduction of the National Disability Insurance Scheme (NDIS), the marketisation of support services and a policy emphasis on self directed, person-centred care (David & West, 2017). These changes reflect international shifts towards individualised funding and direct payment schemes. They are consistent with the emphasis of the United Nations Convention on the Rights of Persons with Disabilities (CRPD, 2006) on the rights of people with disabilities to make decisions about what services they receive and how they are delivered.

The NSW Council of Social Service (NCOSS) is undertaking an action research project to develop (1) a practice model of delivering supported decision-making with a safeguarding focus for people with disability and (2) organisational capacity to provide best practice individual safeguarding support to a diverse range of people with disability. The Social Policy Research Centre (SPRC) has been commissioned to provide research advice, training and action research practice support to NCOSS.

This project research plan was undertaken in 2017. Changes in disability policy, such as the introduction of the National Disability Insurance Scheme (NDIS), entail a move away from substitute decision making for the person with disability to supported decision making by the person themselves, with appropriate safeguard supports to reduce the risk of harm. The project objective is for NSW Council of Social Service (NCOSS) to develop a practice guide to inform organisational capacity to support workers who support people with disability to make decisions about personal safety ,wellbeing and preventing harm.

This paper describes the legal substitute and supported decision-making frameworks (excluding mental health legislation) that operate in Australian jurisdictions and goes on to offer some insights into the lived experience of those providing informal support to adults with an intellectual disability.

The study aimed to shed light on the organisational and operational elements of the concept of circles of support as well as its perceived outcomes. It explored key areas of staff, practice and organisational strategies used to develop circles of support, and perceptions about outcomes experienced by people with intellectual disability, the families and circle members.

This Easy Read report is a summary of a report called Diversity, dignity, equity and best practice: a framework for supported decision-making.
A summary only includes the most important ideas.

This research aimed to understand the significance of supported decision-making to the lives of people with cognitive disabilities, identify its essential elements common to anyone with cognitive disabilities in any context, and locate key implementation issues. For this Report, we understand people with cognitive disabilities to include people with intellectual disabilities, acquired brain injury, dementia and mental health conditions. Synthesising the research findings, this Report articulates the benefits of supported decision-making, sets out nine principles and eight essential elements of a ‘Diversity, Dignity, Equity and Best Practice Framework for Supported Decision-making’ and recommends implementation strategies.

The Royal Commission into the Violence, Abuse, Neglect and Exploitation of People with Disability (the Royal Commission) is looking at the right to autonomy for people with disability, including how this applies in guardianship and decision-making arrangements.