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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.

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]

In recent years, Australia has embarked on a digital transformation of its social services, with the primary goal of creating user‐centric services that are more attentive to the needs of citizens. This article examines operational and technological changes within Australia's National Disability Insurance Scheme (NDIS) as a result of this comprehensive government digital transformation strategy. It discusses the effectiveness of these changes in enhancing outcomes for users of the scheme. Specifically, the focus is on the National Disability Insurance Agency's (NDIA) use of algorithmic decision support systems to aid in the development of personalised support plans. This administrative process, we show, incorporates several automated elements that raise concerns about substantive fairness, accountability, transparency and participation in decision making. The conclusion drawn is that algorithmic systems exercise various forms of state power, but in this case, their subterranean administrative character positions them as “algorithmic grey holes”—spaces effectively beyond recourse to legal remedies and more suited to redress by holistic and systemic accountability reforms advocated by algorithmic justice scholarship. [ABSTRACT FROM AUTHOR]

The sustainable development goals (SDGs) adopted by the United Nations in 2015 include a new target for global health: SDG 3 aims to 'ensure healthy lives and promote well-being for all at all ages.' Dementia care of good quality is particularly important given the projected increase in the number of people living with the condition. A range of assistive technologies have been proposed to support dementia care. However, the World Health organization estimated in 2017 that only one in 10 of the 1 billion or more people globally who could benefit from these technologies in some way actually has access to them. For people living with dementia, there has been little analysis of whether assistive technologies will support their human rights in ways that are consistent with the United Nations Convention on the Rights of Persons with Disabilities. The aim of this paper is to examine the relevant provisions of the convention and consider their implications for the use of assistive technologies in dementia care. Assistive technologies can clearly play an important role in supporting social engagement, decision-making and advance planning by people living with dementia. However, concerns exist that some of these technologies also have the potential to restrict freedom of movement and intrude into privacy. In conclusion, an analysis of the implications of assistive technologies for human rights laws is needed to ensure that technologies are used in ways that support human rights and help meet the health-related SDG 3. Les objectifs de developpement durable (ODD) adoptes par les Nations Unies en 2015 integrent un nouvel objectif de sante mondiale: l'ODD3, qui vise a << permettre a tous de vivre en bonne sante et promouvoir le bien-etre de tous, a tout age >>. Une prise en charge de bonne qualite de la demence est particulierement importante, compte tenu des projections d'augmentation du nombre de personnes atteintes. Plusieurs technologies d'assistance sont proposees pour contribuer a une bonne prise en charge de la demence. Neanmoins, en 2017, l'organisation mondiale de la Sante a estime qu'a l'echelle mondiale, parmi le milliard de personnes -voire plus- susceptibles de beneficier de ces technologies, seule une personne sur 10 peut effectivement y avoir acces. Peu d'analyses ont ete realisees pour determiner si l'utilisation des technologies d'assistance pour les personnes atteintes de demence peut contribuera l'application des droits de l'homme au sens de la Convention des Nations Unies relative aux droits des personnes handicapees. L'objectif de cet article consiste a examiner les dispositions pertinentes de cette convention et a considerer leurs implications pour l'utilisation des technologies d'assistance dans la prise en charge de la demence. Il est clair que les technologies d'assistance peuvent jouer un role important pour aider a l'implication sociale, a la prise de decision et a la planification anticipee des soins chez les personnes atteintes de demence. Mais des doutes existent aussi sur le potentiel de certaines de ces technologies a restreindre la liberte de mouvement et a enfreindre la vie privee. En conclusion, il est necessaire d'analyser les implications de l'usage des technologies d'assistance a la lurniere des legislations sur les droits de l'homme, afin de s'assurer que ces technologies soient employees de maniere a contribuera l'application des droits de l'homme et a atteindre l'ODD3 lie a la sante. Los objetivos de desarrollo sostenible (ODS) adoptados por las Naciones Unidas en 2015 incorporan un nuevo objetivo para la salud mundial: el ODS 3 tiene como objetivo 'garantizar vidas sanas y promocionar el bienestar para todos y para todas las edades'. Una atencion a la demencia de buena calidad es especialmente importante dado el aumento previsto en el numero de personas con dicha enfermedad. Se ha propuesto una gama de tecnologias de asistencia para apoyar la atencion a la demencia. Sin embargo, la organizacion Mundial de la Salud estimo en 2017 que solo una de cada 10 personas de los mil millones de habitantes o mas que hay en el mundo que podrian beneficiarse de tales tecnologias en cierto modo realmente pueden acceder a ellas. Para las personas con demencia, se han realizado pocos analisis de si las tecnologias de asistencia apoyaran sus derechos humanos de forma coherente con la Convencion de las Naciones Unidas sobre los Derechos de las Personas con Discapacidad. El objetivo de este articulo es examinar las disposiciones mas importantes de la convencion y considerar las consecuencias del uso de tecnologias de asistencia para la atencion a la demencia. Sin duda, estas tecnologias pueden tener un papel importante a la hora de apoyar el compromiso social, la toma de decisiones y la planificacion adelantada por parte de las personas que sufren demencia. Sin embargo, existen temores de que algunas de estas tecnologias puedan limitar la libertad de movimiento e invadir la privacidad. En conclusion, es necesario realizar un analisis de las consecuencias de las tecnologias de asistencia sobre las leyes de derechos humanos para garantizar que se utilicen las tecnologias de forma que respalden los derechos humanos y ayuden a lograrei ODS 3 relacionado con la salud., Introduction The sustainable development goals (SDGs) adopted by the United Nations in 2015 propose a new target for global health: the aim of SDG 3 is to 'ensure healthy lives [...]

Background: Supported decision-making and personal budgets for services are the new paradigms. Method: Supported decision-making proposals from the Australian State of Victoria are analysed against international trends to determine the viability of laws reflecting new international norms of the United Nations Convention on the Rights of Persons with Disabilities 2006 (CRPD). Results/Conclusions: The article concludes that it is desirable to pursue supported decision-making and allied legal reforms, but the contribution of the law is small and the new supported decision-making paradigms have similarities to old paternalist guardianship, as well as possible unintended consequences. It is suggested that realising the equality, support, protection, and socioeconomic service aspirations of the CRPD raise important practical challenges for governments, for service providers, for families, and--centrally--for people with intellectual disability (ID). This article examines the limited contribution law can make to this enterprise. (Contains 15 notes.)

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]