My Rights: Supported Decision Making

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Making Decision-Making a Part of Life

As a disability support worker, it is important to not only provide support for decision-making, but also increase the opportunities a person has for decision making. Try to help the person develop skills and independence in decision-making. Skills in decision-making will improve if the person has opportunities to practice. This factshett is designed for support workers supporting people with decision making.

Introduction to Decision-Making Support

This is a factsheet designed for support workers about decision-making support. Decision-making support is a way of supporting people with cognitive disability (intellectual disability or acquired brain injury) to have their opinions heard and understood, and to help them make major decisions.

The Role of Supporters

This is a factsheet about the role of supporters of people with disability. Supporters are people who listen and promote the person’s will and preferences (i.e., what a person wants, doesn’t want, likes, dislikes, prefers to do).

Does it matter? Decision-making by People with Learning Disabilities.

An easy read report, by People First Scotland, about the research they did on decisions and decision-making by adults with learning disabilities. The research aimed to answer the question ‘Does it matter to people with learning disabilities whether they are supported to make their own decisions or have others make decisions for them in their lives?’.

Riding LIFE – Brad Goldman

Brad Goldman is a man with DRIVE. After living for most of the first 25 years of his life at Metheny Hospital and School in Peapack, NJ, he sought out the support of Neighbours Inc. to assist him in pursuing his vision of life as someone who had the power and authority to create life he wanted to live. Seventeen years later, Brad has lived in his own apartment, managed his own staff, and thrives as a painter, photographer, and business entrepreneur.

Supported Decision Making: Understanding How its Conceptual Link to Legal Capacity is Influencing the Development of Practice

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. It is important to understand the difference between supported decision making and support with decision making. Both involve offering support to a person who is unable to navigate decision making independently. However, the key difference is whether or not the process results in greater legal capacity for the individual. Additionally, supported decision making requires the development of legal mechanisms that legitimise the interdependent nature of decision making and the concept of shared capacity.

By having a greater understanding of the conceptual foundations of supported decision making, practitioners can engage in more focused evaluation of proposed new law reform and practice. Research will be vital in understanding how supported and substituted decision making could coexist and how mental capacity could be assessed in this new decision making paradigm. If a more substantial theory of practice can be developed, supported decision making has the potential to empower and enrich the lives of people with cognitive disabilities, both in Australia and all over the world.

Beyond Guardianship: Supported Decision Making By Individuals With Intellectual Disabilities

Guardianship deprives people with intellectual disabilities of their ability to make their own decisions, and of legal recognition of those decisions. A guardian is appointed by a court to make some or all decisions for the person, based on “substituted judgment,” taking into account what the person wants or would have wanted. If the guardian does not know what the person wants or would have wanted, the guardian can make a decision based on his or her view of the person’s “best interests.”

Ratification of the UN Convention on The Rights of Person with Disabilities would create both the opportunity and obligation to move from a legal system that measures and judges “mental capacity” – and that, upon a finding of”incapacity,” appoints a guardian to make substituted or best interest decisions for the person under guardianship – to a system that affirms the legal capacity of persons with intellectual disabilities and provides them with the supports necessary to make their own decisions and have those decisions legally recognized.

Claiming Full Citizenship 2015 International Conference

With the passage of the UN Convention on the Rights of Persons with Disabilities, self-determination, personalization and individualized funding initiatives have a new foundation upon which to build. In countries all over the world, these initiatives are transforming the lives of people with disabilities. Like the shift from institutions to community services, these initiatives are a momentous step forward in assisting people with disabilities and seniors achieve meaningful and rewarding lives as full citizens. In October of 2015, the UBC Centre for Inclusion and Citizenship is hosted “Claiming Full Citizenship: an international conference on Self Determination, Personalization and Individualized Funding”. This document is the syllabus from this event.

Equal Rights For All! Access To Rights And Justice For People With Intellectual Disabilities

Most people with intellectual disabilities in Europe cannot fully participate in the normal life of society. They experience social exclusion and discrimination and often cannot enjoy the rights and benefits of full citizenship. A recent study of Inclusion Europe also proves that they are often victims of poverty and have a very low rate of employment, even when compared to other groups of disabled people. Co-financed by the European Commission, the partners of the project “Justice, Rights and Inclusion for People with Intellectual Disabilities” have examined and developed strategies that can support the better inclusion of people with intellectual disabilities in society and promote their access to rights and justice.

Future Directions in Supported Decision-Making

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.

Key Elements of a System for Supported Decision Making: Inclusion International Position Paper

The UN Convention on the Rights of Persons with Disabilities demands in its Article 12 equal recognition before the law for all persons with disabilities. This Position Paper explores which key elements are necessary to implement this principle in the legal systems of all countries that have ratified the Convention. Starting from the discussion of some basic notions regarding legal capacity, the Position Paper identifies eight elements that should be considered in the implementation of this article to make the UN Convention a tool that promotes the rights of persons with intellectual disabilities.

Supportive Decision-Making Study

Supportive Decision Making Study
House Joint Resolution 190

This report contains information about the background and context for the alternative to guardianship known as Supported Decision Making.

Self Determination And Person Centred Planning

Older people and people with disabilities can, in Michigan, be in charge of making the decisions affecting their lives. However, if they are dependent on a public system for the services and supports they need, in the past they were not given the power to make these choices. Self-determination with person-centered planning has been mandated in Michigan by MCL 330.1700(g). This may cause the most significant change in the delivery of services to individuals with disabilities in many years. This is a process designed to shift power in negotiating the mental health system from the professional to the individual receiving services.

Social researchers and participants with intellectual disabilities and complex communication access needs: Whose capacity? Whose competence?

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. Revealed are the adaptations and approaches made to the core elements of the study: communication access, research design, consent-to-research, and methods. Also described are subsequent participant insights on the topic of inclusion of people with complex communication access needs in research. The investigation contributes to an evolving body of literature on inclusive research, highlighting tensions of competence and capacity, as well as capacity-building challenges more broadly.

Supported Decision Making: Protecting Rights, Ensuring Choices

This article introduces Supported Decision-Making, an alternative to guardianship where people make their own decisions, without a guardian, while receiving the help they need and want to do so.
Supported Decision-Making protects and enhances the “principal prerogative all people have to make their own decisions and direct their own lives to the maximum of their abilities” and can improve life outcomes like health, independence, safety, and employment.

Supported Decision-Making for Persons with Mental Illness: A Review

Persons with mental illness (PWMI) are often not afforded the same opportunity to make decisions on a par with others in society. Article 12 of the International Convention on the Rights of Persons with Disabilities (CRPD) states that persons with disabilities should have equal recognition before the law and the right to exercise their legal capacity. Exercising legal capacity can mean making decisions about employment, medical or psychosocial treatment, property, finances, family, and participation in community activities. The aim of this paper is to comprehensively review the evidence on supported decision making for PWMI, both in legislation and research globally, with a focus on low- and middle-income countries (LMICs).

Results reveal only a few countries have provisions for supported decision-making for PWMI, with a particular shortage of such provisions in legislation in LMICs There is also a general paucity of research evidence for supported decision-making, with the majority of research focusing on shared decision-making for treatment decisions. This review highlights the need for additional research in this area to better guide models, which can be utilised in domestic legislation, particularly in LMICs, to better implement the ideals of Article 12 of the CRPD.

Every voice counts: Exploring Communication Accessible Research Methods

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.

Delivering decision making support to people with cognitive disability — What has been learned from pilot programs in Australia from 2010 to 2015

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. A critical review was conducted on the program documents and evaluations of these pilot projects. The pilots were small scale, conducted by both statutory and non-statutory bodies, and adopted similar designs centred on supporting a decision maker/supporter dyad. Primarily, participants were people with mild intellectual disability. Themes included: positive outcomes; uncertain boundaries of decision support; difficulty securing supporters; positive value of program staff and support to supporters; limited experience and low expectations; and varying value of written resources. The lack of depth and rigour of evaluations mean firm conclusions cannot be reached about program logics, costs or outcomes of the pilots. The pilots demonstrate feasibility of providing support for decision making rather than resolving issues involved in delivering support. They suggest that some form of authority may facilitate the role of decision supporters, help to engage others in a person’s life, and integrate decision making support across all life domains

Supported Decision-Making for People with Cognitive Impairments: An Australian Perspective?

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. Old measures such as representative payee schemes or “nominee” arrangements are not compatible with the CRPD. However, as comparatively routine social security or other government services become increasingly complex to navigate, and as self-managed or personalised budgets better recognise self-agency, any “off the shelf” measures become more difficult to craft and difficult to resource. This paper focuses on recent endeavours of the Australian Law Reform Commission and other local and overseas law reform and policy initiatives to tackle challenges posed both for ordinary citizens and those covered by special programs (such as Australia’s National Disability Insurance Scheme and “disability trusts” in Australia and Canada).

Assumptions of Decision-Making Capacity: The Role Supporter Attitudes Play in the Realisation of Article 12 for People with Severe or Profound Intellectual Disability

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 p

From Provisions to Practice: Implementing The Convention

With supported decision-making, the presumption is always in favour of the person with a disability who will be affected by the decision. The individual is the decision maker; the support person(s) explain(s) the issues, when necessary, and interpret(s) the signs and preferences of the individual. Even when an individual with a disability requires totalsupport, the support person(s) should enable the individual to exercise his/her legal capacity to the greatest extent possible, according to the wishes of the individual. This distinguishes supported decision-making from substituted decision-making, such as advance directives and legal mentors/friends, where the guardian or tutor has court-authorized power to make decisions on behalf of the individual without necessarily having to demonstrate that those decisions are in the individual’s best interest or according to Development and human rights for all.

Inclusion International Position Paper on Legal Capacity

Inclusion International demands the right of every person with an intellectual disability to have
their right to make decisions recognized and to receive the support they require in making
those decisions. The right to legal capacity includes the capacity to have rights and the capacity to act on those rights, i.e. the capacity to make legal agreements with others.

Funded by the Australian Government Department of Social Services. Go to www.dss.gov.au for more information.
These resources are in the process of being transferred to Inclusion Solutions. Click here to visit their website.

A resource of WA Individualised Services.