This booklet sets out guidelines for families and supporters – including siblings, friends and others – to help people with cognitive disability make decisions.
Nick likes to make decisions. To make decisions about his life puts him in control. They also provide him with opportunities to learn. Nick is an energetic young man, who has strong family connections and friendships, an adored long time girlfriend, and a desire for a life of his own, separate from his parents. He also has cerebral palsy, an intellectual disability and epilepsy. The impact of these conditions are that he is unable to speak, and needs a walking frame or wheelchair to get around. He is impulsive and his sense of danger is variable and dependent on his mood and focus at the time. This paper highlights the question “What do we need to do to support Nick’s choices?”
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.
Robert and Amy Steeples tell us about communicating with their sister Claire, and focus on one particular Augmentative and Alternative Communication (AAC) strategy which has completely changed Claire’s life.
Let me introduce myself. I am Jason Harris, an autistic person and researcher at the Burton Blatt Institute. Supported decision-making (SDM) is something that is very important in my life. This is true for me both professionally and personally. As someone who has a master’s degree in disability studies and whose work involves disability rights, these ideas around disability in general, and SDM specifically, are important to my work and how I do my work. As well as doing work around SDM, it is something I use personally in my own life.
In 1982, Justin Clark won the right to leave the institution and make his own decisions about his future. The impact of his case — a pivotal moment in the Canadian disability rights movement — continues to be felt today. His contribution was to transform society’s understanding of disability, in telling his own story.
Belinda enjoys freedom of choice in her life. In 2015 Texas became the first state in the United States to pass a law recognising supported decision making as an alternative to Guardianship, and that the courts consider all alternatives to guardianship first.
People are often unjustly seen as not having the capacity to make their own decisions. Their rights to make decisions are often taken away through guardianship. However, with Supported Decision Making, an individual making a decision with the help of a supportive group gives them control over their own lives. With Supported Decision Making, an individual making a decision with the help of a supportive group gives them control over their own lives. Social inclusion must include the process of making decisions. We all make decisions with the help of a supportive, caring circle of family and friends. We all need Supported Decision Making.
At long last, after a year of litigation and six days of trial, Jenny won the right to make her own decisions in 2013. Jenny now lives and works where she wants, has the friends she chooses, and encourages others to do the same.
Anthony speaks about his four key goals for life – how he has developed his communication skills, established his own voice and developed his decision making capacity to further enhance his life choices and self determination.
This video is an example of building a support network with Jason’s circle of friends and family. Jason’s capacity to connect with people has made it possible to draw people together, forming a small community of people who are committed to making sure that Jason is supported with his decision making.
Amanda Benoit is a self-advocate and proud representative of the Supported Decision-making Pilot Project, a joint initiative of Nonotuck and the Center for Public Representation.
John McCarty describes how he terminated his guardianship, and had his rights fully restored, by using Supported Decision Making.
John McCarty describes the framework for getting started and why this is important for all people with disabilities. Supported Decision Making is a process that leads to self-determination for people with disabilities.
In this video Jordan shares his supported decision-making story and how he almost lost his rights. Jordan and Ashley also talk about a new project they are working on for the Centre of Youth Voice, Youth Choice to train other self-advocates about alternatives to guardianship.
Will McMillan makes his own decisions with help from trusted family and friends. Will shares lessons he’s learned and tips for making good decisions. “I might make mistakes, but I learned to pick myself up and keep going.”
These videos explain supported decision-making. They were launched in November 2022 by the Living My Life Project to provide organisations, services, and professionals access to resources that will help them build the decision-making capacity of the people who use their services.
“I am the director of my own ‘institution’” depicts István’s transition to living independently with the support of people he trusts, and free legal support provided by Validity. The film shows the legal and social barriers István faced to gaining true independence, including the threat of being placed under guardianship and our legal steps to ensure he retained his right to legal capacity. It also describes Validity’s work to undertake strategic litigation challenging largescale systems of institutionalisation and guardianship that affect millions of persons with disabilities around the world.
Justin Clark tells the story of how he fought for the right to make his own decisions and leave the institution where he lived for 18 years, to live his life as he chose. In 1982, he won the right to leave the institution and make his own decisions about his future. The impact of his case — a pivotal moment in the Canadian disability rights movement — continues to be felt today.