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 at the end-of-life. Due to improved health care, people 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.
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.
A summary of a paper that attempts to answer a question framed by the Law Commission of Ontario: “What principles and considerations should be applied when considering placing limitations on the ability of persons with disabilities to make their own choices?” In particular, the paper identifies persons with severe intellectual, cognitive or psychosocial disabilities as most at risk of being considered “not capable” of decision making by people caring for them.
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 is the fifth of five resources in the It’s My Choice toolkit. From a human rights perspective choice plays a central role as one of the primary underlying principles. In the UN Convention on the Rights of Persons with Disabilities (CRPD) choice and autonomy are the basis of the first principle and linked to the aspiration of independence: ‘Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons…’(Article 3a)
This is the fourth of five resources in the It’s My Choice toolkit. This Film and Discussion Guide will help you talk about three films about making your own choices.
This is the third of five resources in the It’s My Choice toolkit. This guide is designed for Disability Service Providers (DSPs) and support workers to support people with disabilities to make their own choices and to develop service and choice planning frameworks that deliver better lives.
This is the second of five resources in the It’s My Choice toolkit: A Guide for People with a Disability, their Family Carers, Friends and Advocates.
This is the first of five resources in the It’s My Choice! toolkit. While choice is often spoken about, as a practical task it is far from easy to implement. Developed in partnership by Inclusion Melbourne and RMIT University, this toolkit consists of five guides that support people with a disability, families and support providers to understand and explore the principles of choice. It also provides examples, worksheets and other practical tools to support people to develop their choice making abilities.
Choice and autonomy are recognized as values facilitating genuine self-determination. Subsequently greater understanding of these concepts in decision-making practice is required. This research study undertaken in a single organization in the Republic of Ireland applied classic-grounded theory methods. Participants included twelve adults who were attending day services and accessing a variety of other organizational services. The main issue of concern for these participants was ‘control’ in environments that were controlling of them and they responded by ‘aligning with the flow of control’ explained by how they framed control, emotionally connected and adjusted in compliance situations.
Connie Lyle-O’Brien and John O’Brien explore the complexity of choice for people with developmental disabilities in the absence of a breadth of experience, and a strong network of relationships.
Self-Determination Defined – “It’s a big word that means something extraordinarily simple. It’s helping people live ordinary and extraordinary lives just like anyone else.” Self-determination is more than the self, it is about partnership. “The essence of self-determination is not just doing things by oneself but doing it in the context of others people you care about and want to be a part of your life.”
Genia Stephen, in her ‘Good Things In Life’ podcast series invites John O’Brien to talk about belonging, respect, sharing spaces, contribution, and choice. Those are the five valued experiences for the good things in life, as defined by John O’Brien.
The strategy is about Aboriginal people, families and communities being empowered to live good lives and choose their own futures from a secure foundation. Empowerment and self determination involves people making decisions about their own lives, and getting the support needed to make this happen. Critically, Aboriginal people – rather than the Government or anyone else – decide what makes a ‘good life’ and how to achieve it.
The UN Convention on the Rights of Persons with Disabilities (UN CRPD) is a binding United Nations human rights treaty for persons with disabilities – Signed and ratified by almost all EU Member States and the EU itself. Article 12. of the UNCRPD wants to ensure that every person with disabilities including people with psychosocial disabilities may enjoy equal recognition before the law which requires legal capacity. This short animated video seeks to explain what legal capacity is all about and recalls that everyone has the inherent right to make their own choices including people with psychosocial disabilities.
People who are self-determined make things happen in their own lives. They know what they want and how to get it. They choose and set goals, then work to reach them. They advocate on their own behalf, and are involved in solving problems and making decisions about their lives.
CRU engages with people on questions of values and vision. Being able to make decisions about the aspects of life that are personally meaningful is important to everyone. What would it take for people to feel in control of their lives and take their rightful place in the community?
Michael Kendrick, an international human services consultant with a wealth of knowledge about service delivery issues across the world, talks about the meaning of supported decision making and the role it can play in, where people are seen as decision makers and could be supported to become good decision makers.
Godfrey Nazareth is a biomedical engineer who makes use of AAC to communicate with others. In this presentation (including a question and answer session) to a graduate class in augmentative and alternative communication at Penn State University, Godfrey describes his experiences as a person with a diagnosis of ALS, and his use of AAC to support his life as a husband, a father, a medical researcher, avionics expert, and airplane pilot.
A Community Circle brings people together to help someone to live a more connected life, Community Circles support people to do what matters to them. They are about finding out what is important to the person, and thinking together about how to turn that purpose into meaningful action. It is also a way to help people self direct their lives through supporting their decision making, ensuring choice and control.
In this video, Women with Disabilities Australia (WWDA) members talk about the human rights of all people to make decisions about their lives.
In this video various individuals highlight the need for Choice in Supported Decision Making. Choice and SDM are key and essential factors in recovery planning and also in development of Psychiatric Advance Directives.
This small book is about how to give the kind of thoughtful help that will make sure everybody can be in control of their own life. Living our own life means being the author of our own life, directing it, making our own decisions, taking our own risks.
Jonathan Martinis walks us through the importance of Supported Decision Making and the fundamental human right of being able to make your own choices in life.
Dr Browning explains the practicalities of Supported Decision Making.
Funded by the Australian Government Department of Social Services. Go to www.dss.gov.au for more information.
This animation describes the process of practical assistance with decision making to people who need support.
Funded by the Australian Government Department of Social Services. Go to www.dss.gov.au for more information
In this talk Jo challenges assumptions that people with severe or profound cognitive disability are unable to lead self-determined lives. She provides guidance to signatory nations in their efforts to uphold their obligations under the United Nations Convention on the Rights of Persons with Disabilities to ensure everyone is able to lead lives of their preference, including those rarely heard. Dr Jo Watson is a Lecturer, Researcher and Speech Pathologist, specialising in Disability and Inclusion at Deakin University in Australia.
Our Town is demonstrating the role that community plays in shaping mental health and wellbeing, and the roles that communities can play outside of formal service delivery to increase mental wellbeing. Our Town communities are demonstrating the shifts that are possible when you work at the level of local cultures, mindsets and economies. The initiative gives towns and regions the power and opportunity to define what’s best for their community, so that they can reclaim their mental wellbeing.
This book provides practical prompts to help non-Aboriginal and Torres Strait Islander organisations engage First Nations Peoples and foreground First Nations’ wisdom, so that together, we can further reconciliation, self-determination and change.
While supported decision-making is about helping others to make decisions, its vision in many respects is revolutionary, and asks us to think about some fundamental things differently. By recognising decision making as an interdependent process and embracing a new way of thinking about decision-making capacity we are able to forge new ways for people with disability to take back control of their lives. Many people with disability have been subject to informal and formal substituted decision-making arrangements directed by what other people believe to be in their best interest. Article 12 of the United Nations Convention for the Rights of Persons with Disabilities (UNCRPD) says this is no longer acceptable. All people have a right to receive the support they need to direct the decisions which shape their lives and be legal decision makers.
Dr Browning talks about the importance of Supported Decision Making and the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD).
Dr Browning speaks about the two important aims of Supported Decision Making.
Dr Browning refers to a video on legal capacity by Michael Bach which you can watch via this link: Looking Differently at Disability and Decision Making – YouTube