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Background: Supporting participation in decision making is complex, dynamic and multifactorial. The aim of this study was to understand more about the difficulties parents of adults with intellectual disabilities experienced in providing decision support and their strategies for resolving them. Method: Participants were 23 parents who regularly provided decision support for their adult with intellectual disabilities. Most of the adults (19) lived at home. Parents participated in semi-structured interviews at least three times during the study. We applied a social-constructionist theoretical perspective and a template approach for analysis. Results: Findings fell into three core categories, making the right decision, factors that made decision support difficult, and strategies to manage uncertainty, which included controlling, influencing, expanding the adult's horizons and enabling risk. Conclusions: The knowledge gained will help in building the capacity of parents to provide decision support that better understands and respects the will and preferences of the person they support.

This article focuses on the interests of older Australians during the COVID-19 pandemic, It analyses aspects of Australian law by considering the implications of the pandemic for older Australians in order to evaluate the adequacy of existing laws in meeting their needs. We begin by analysing two important challenges. First, although we focus on the interests of older Australians, defining what is meant by 'older' can be challenging. Second, although we adopt a rights-based approach to our analysis, we recognise that there is no convention on the rights of older persons that clearly articulates the rights of older persons. In the remaining parts of the article, we examine different areas of law (antidiscrimination laws, responses to social isolation, and participation in medical research of individuals where capacity has been lost or is diminishing) as examples through which to analyse the impact of the pandemic on older Australians and to provide insights into the adequacy of current Australian laws., I INTRODUCTION 'We're all in this together' has been an often-used phrase during the COVID-19 pandemic. Certainly, the pandemic, and its consequences for health and economic well-being, has presented challenges [...]

Article 12 of the United Nations Convention on the Rights of Persons with Disabilities has been instrumental in driving the development of the concept and practice of supported decision making. An important feature has been the development of "supported decision making pilots." This paper identifies, describes and analyses pilot programmes providing support for decision making for people with cognitive disabilities in Australia and internationally between 2016 and 2021. It finds that challenges included providing support for socially isolated people and adequately resourcing those programmes. However, most pilots reported positive outcomes for decision makers, adding to the evidence base for claims to be made about the positive impact of supported decision making on the lives of people with disabilities. The pilots demonstrate that, internationally, there is an emerging set of programmes that seek to promote supported decision making incrementally through developing focussed community awareness and practice. While still small‐scale, time‐limited and experimental, with different levels of rigour in practice and evaluation, they provide some foundation and a preliminary evidence base for larger interventions and reforms in the future. [ABSTRACT FROM AUTHOR]

The National Disability Insurance Scheme ('NDIS') has been criticised for failing adequately to live up to the promise of individualised resource packages tailored to the needs of each participant, instead applying bureaucratic, standardised administrative logics. This paper analyses the legal architecture, policy assumptions and administration of the NDIS to establish the extent to which its guiding philosophy lies in professional person-centred case planning, an insurance logic, or principles of equity and efficiency of decision-making; and then assesses the contribution of legal remedies in ensuring fidelity of purpose to policy goals. It is argued that whatever the validity of criticism of NDIS Taylorist administrative standardisation and data-driven planning, it is neither an error of law nor responsive to merits review avenues. Undue weighting of equity and efficiency goals over the preferences and needs of individual participants nevertheless remains ethically problematic in unduly elevating an ethics of justice (impartial planning based on abstract principles applied consistently to all participants) over an ethics of care that views each participant as unique, as arguably the NDIS was designed to promote., Contents I Introduction II The NDIS and the Planning Framework A Contemporary Human Services Delivery Models and the NDIS B The Legislative Framework for NDIS Participation and Planning 1 The [...]

This article reports findings from the first set of qualitative data from a study aimed to further understand practices of decision support for people with cognitive disabilities and assess the impact of training supporters in an evidence-based practice framework. It poses questions about whether, using the Convention on the Rights of Persons with Disabilities (CRPD) as the benchmark, it is possible to identify purchase points for assessing the degree of shift from paternalism towards empowerment of the supported person. The study findings suggest that this is a highly difficult, nuanced and subjective task offering little on which to hang objectivity. Instead, we suggest CRPD realisation of the will, preferences and rights of the person supported may better be realised through training of supporters designed to enable greater participation by persons supported and greater reflection and deliberation on wise and effective ways of providing such support by supporters. The meaning of terms like empowerment, paternalism and capacity building are very difficult to define with any precision Whether support actually helps someone with a cognitive disability to achieve their will or preferences is hard to assess There are no easy ways of ensuring that support for decision-making stays on the path set out in the UN Convention on the Rights of Persons with Disabilities An alternative measure of meaningful participation in decision-making may be a better guide for assessing training of supporters [ABSTRACT FROM AUTHOR]

A rights perspective proposes supported decision-making as an alternative to substitute decision-making. However, evidence about supported decision-making practice is limited. Our aim was to build evidence about building the capacity of decision supporters. Eighteen parents of people with intellectual disabilities were trained in decision support using the La Trobe Support for Decision-making Practice Framework. Data from repeated semi-structured interviews and mentoring sessions were used to capture parental reflections on the value of training. The training acted as a catalyst for parent self-reflection and the Framework prompted them to adopt a more deliberative approach to supporting decision-making. Some parents perceived increased confidence of their adult offspring in expressing preferences resulting from their own changed approach. This study demonstrates the efficacy of this Framework and evidence-based training in building the capacity of parental decision supporters to be consistent with the rights paradigm. The La Trobe Support for Decision-making Practice Framework is an evidence-based approach to decision support practice with an accompanying set of free online resources which can be used by individual practitioners or programs to inform their practice and build the capacity of supporters. Parents of adults with intellectual disabilities value training in the La Trobe Support for Decision-making Practice Framework, which they consider helps to develop their decision support skills and self-reflection. Parents also value individual mentoring following training to assist them to apply the principles of the practice framework to the everyday support for decision-making they provide to their adult son or daughter. Training in support practice should be accompanied by individual mentoring or other strategies to assist parents of adults with intellectual disabilities to discuss and solve the difficult issues they confront in providing decision support more aligned to the rights paradigm. [ABSTRACT FROM AUTHOR]

Support practices of paid disability support staff often restrict decision-making autonomy for people with cognitive disability, partly due to inadequate training and supervision (Antaki et al., [3]). [Paper Presentation], The Living With Disability Research Center Roundtable: supporting people with cognitive disabilities with decision making, Melbourne. Development of an evidence-based practice framework to guide decision making support for people with cognitive impairment due to acquired brain injury or intellectual disability. Keywords: Intellectual disability; acquired brain injury; supported decision making; temporality; participation; Handicap intellectuel; lésion cérébrale acquise; prise de décision assistée; temporalité; Discapacidad intelectual; lesión cerebral adquirida; toma de decisiones con asistencia; temporalidad; participación EN Intellectual disability acquired brain injury supported decision making temporality participation FR Handicap intellectuel lésion cérébrale acquise prise de décision assistée temporalité ES Discapacidad intelectual lesión cerebral adquirida toma de decisiones con asistencia temporalidad participación 934 952 19 09/09/22 20220901 NES 220901 Introduction Having a voice in decisions about matters that affect one's life is an important aspect of "personhood" (Flynn & Arstein-Kerslake, [17]) and self-determination (Shogren et al., [36]). [Extracted from the article]

Supporting participation in decision making is complex, dynamic and multifactorial. The aim of this study was to understand more about the difficulties parents of adults with intellectual disabilities experienced in providing decision support and their strategies for resolving them. Participants were 23 parents who regularly provided decision support for their adult with intellectual disabilities. Most of the adults (19) lived at home. Parents participated in semi-structured interviews at least three times during the study. We applied a social-constructionist theoretical perspective and a template approach for analysis. Findings fell into three core categories, making the right decision, factors that made decision support difficult, and strategies to manage uncertainty, which included controlling, influencing, expanding the adult's horizons and enabling risk. The knowledge gained will help in building the capacity of parents to provide decision support that better understands and respects the will and preferences of the person they support. [ABSTRACT FROM AUTHOR]