About Supported Decision Making at ADACAS
Supported decision making happens when one person supports another person to be engaged in decision making. People may like support to decide due to an intellectual disability, acquired brain injury, psychosocial disability or as they age. The United Nations Convention on the Rights of Person’s with Disability (UNCRPD) calls for adoption of supported decision making to enable people with disability to enjoy autonomy and inclusion, and live equal and active lives.
ADACAS has undertaken a range of projects which contribute to our community’s knowledge of supported decision making. Through these projects we recognise that each person and each decision will need its own supports. The type of support given will depend on the relationship between supporter and decision maker. ADACAS recognises that, potentially, all people have a role and, as a result, we work to build the capacity of our community as a whole, as both decision makers and decision supporters. We do this through supported decision making training, project work, and through a supported decision making website, www.support-my-decision.org.au. ADACAS has also developed Principles for Decision Supporters, which can guide potential supporters in their role.
While developing the capacity of our community as a whole to engage in supported decision making, ADACAS also recognised that cultural change, will be essential if all people are able to access their right to decide. Spectrums of Support, recognised that, for people with intellectual impairment, access to, and experience of decision making can have less to do with a person’s functional capacity to decide, and more to do with the values, attitudes and interests of those who they share their lives with. The report recommends a universal model for the delivery of decision support, where everyone, potentially has a role. ADACAS works to promote the developing culture of supported decision making in the ACT and beyond, through the delivery of training and through advocacy for supported decision making across, using rights based principles, throughout our community.
What is supported decision making?
Supported Decision Making is for people who may need support to make decisions. They may need support because their decision making capacity is impaired due to age, disability, acquired brain injury or mental illness.
Supported decision making is also for people sharing their lives with a person who has impaired decision making. It offers a way to give support that enables the person with impaired capacity to live the life they would choose for themselves, regardless of their disability.
Supported decision making happens when one person gives another person as much support as they need to be involved in the decisions that are important to them. With support some people can be fully engaged in all parts of a decision. People with more significant support needs, or making very complex decisions, might be supported to express their will and preference. Whoever the person and whatever their decision, supported decision making recognises that, with support, all people can be engaged in the decisions that are important to them.
How do you support a decision?
There is no one way to give decision support. The kinds of support given will depend on the person, the decision they are making, the time they are making it and who is supporting them. Every person and every decision may have different support needs.
ADACAS recognises 5 key areas for decision support
- Building expectation to be a decision maker
- Learning about decision making
- Support to make a decision
- Support to fulfil a decision
- Advocacy for a decision
How much support a person needs will depend on how much experience they have making a particular decision. Some people may need only a little support. Others may need more. Some people may need support to recognise that they have a right to decide, others may only need support to ensure that others are listening to their decisions. With support some people can be highly engaged in decision making, others may be supported to express a preference.
While everyone has different needs, support is given through the rights based Principles for Decision Support. These create a framework for both decision maker and supporter, and ensure that a substitute decision is not being made in the name of a supported decision.
Supported decision making will look different for each person – depending on the kind of support they need, and who is around them that could be a decision supporter. A person might have different supporters for different decisions. They may need a support for many decisions in the beginning, but need less support as they learn the skills of decision making. A decision supporter might be:
- A family member or friend
- A support worker or teacher
- A professional decision supporter
Finding the right person to be a decision supporter and developing skills in giving decision support can take time. Some people may need assistance to establish decision support processes and relationships. ADACAS offers training to people who would like to learn more about supporting decisions.
There is a web-based tool which people can use to support their decision making. You might use it independently or with help from someone to use the site or to support your decision. There is also a lot more information about decision making and being a decision supporter available on the website. Find out more about the tool here at http://support-my-decision.org.au/
Why is supported decision making so important? David’s Story
David has a job, a place to call home and a social life that revolves around sport and church. He values his independence and his family and friends. He felt happy to welcome a potential new friend – James - another regular morning coffee buyer who frequented a café close to David’s work.
Over a period of weeks David and James chatted while waiting for their orders. They laughed about the ‘coincidence’ of arriving at the same time so often. David thought James must really want to be friends, because James wanted to know all about him – asking all kinds of questions.
One day James told David that he was in difficult situation. Following a disagreement his flatmate had locked him out of their house. He had found a new flat and planned to buy furniture using a loan from a major retailer. When he tried to sign the loan documents, he found the identification he needed was locked in his old house.
He asked David to help. Could he sign the loan documents on James’ behalf? James told David that “you know me! You know you can trust me.” David thought he could trust James, but he also worried that signing a loan on someone else’s behalf was wrong. James assured him that ‘everyone does it!’ David did not know how to say no, so he signed the documents and hoped James would pay off the debt before his mum found out.
James stopped buying his morning coffee just before David starting receiving phone calls from debt collectors. On top of the loan James had used David’s personal information to get more credit. David found himself with a collective debt of more than $18 000.
David worked with an advocate to contact the police and negotiate with creditors. His family thought that perhaps he might need a financial trustee, but David did not want to lose his independence. Instead he sought out support for decision making.
With his decision supporter David has been able to develop new skills and strategies to make him less vulnerable in the future, without losing his right to decide. David is learning to recognise when trust is due, how to protect his privacy, to explore options and to think about and manage risks. He is learning to weigh up decisions, and to ensure that his decisions are heard.
David is learning and using these skills with his friend Wilson, who has agreed to be his decision supporter. David and Wilson have created a supported decision making agreement. This is a document that says that David will not make significant financial decisions without first talking it over with Wilson.
Supporting Helen’s Right to Decide
The United Nations Convention on the Rights of People with Disability recognises that people with disability have the same rights as all other people. To treat people differently due to their disability is to discriminate against them. All people have the right to decide. You are born with this right. Supported decision making is a way of enabling people whose capacity to decide is impaired to use this right, and to ensure that they are living equal and active lives.
Helen has spent much of her life living in institutions. Many of the people in her life assume that she has no interest in making decisions and so they just decide most things for her. It’s not so much that Helen has no interest in making decisions – she’s become so used to others deciding for her that it doesn’t occur to her that she can be her own decision maker.
Part of decision support for Helen has been building up her expectation that she had a right to have a say in the things that were important to her, then find out how to support her to make decisions. Helen’s key worker, Amanda, made a commitment to support her. She has undertaken decision support training, and, using the principles for decision support is working to ensure that Helen is more active in making real decisions in her day to day life. These are simple decisions about Helen’s food, how she is supported, what she wears and how she spends her time. By starting with these smaller decisions Helen can learn the skills she needs to be ready for the more significant ones.
Amanda recognises that, while she offered Helen choices in the past, these are not the same as decision making. “Helen’s options were really very limited. I recognise that the options Helen was choosing from were not even options that she wanted in the first place.” Through supported decision making Helen is experiencing new things; she is learning how to say no to the things she doesn’t want, and to explore the things she does.
Helen has also had the opportunity to make a few decisions that have not turned out as she hoped, which has been a learning curve for both her and Amanda. Helen has had the opportunity to learn from a mistake - “I always wanted a bikini. I really through I would wear it when I went to the pool. I feel great in it... but it’s no good for aqua-aerobics. I won’t do that again!” As a decision supporter it was not Amanda’s role to stop Helen from buying something she wanted - but to support her to understand the consequences and manage the risks. “Shoppers regret - just about everyone has experienced it. It’s part of learning how to make good decisions as a consumer. Helen needed support and opportunity to learn this - just like everyone else!” As a supporter I needed to learn to stand next to Helen so she could learn from her mistake, in the same way others get to, and not stop her from making the mistake in the first place.
Helen is looking forward to making decisions about her future. She is building both her expectation and her capacity to make more significant decisions - like planning for her support in the NDIS. She is hopes to find a person to support her decisions who is not paid to be in her life, but, in the meantime, is enjoying working with Amanda in a different way.
Supported decision making and guardianship
In the past substitute decision making – that is making a decision on someone else’s behalf - has been an integral part of life for people with impaired capacity. In Australia substitute decision making is formalised through legal guardianship, which is intended to be used to make complex and significant decisions. Many people with impaired capacity also experience informal substitute decision making in day to day life by family members, carers, support workers, health care providers and others.
The United Nations Convention on the Rights of Persons with Disability recognises however, that guardianship is not consistent with the idea that people with disability should enjoy the same rights as those who do not have a disability. When a guardian is appointed the subject of guardianship has their rights extinguished to become a protected person. They lose their equal standing before the law and their ability to act autonomously. The UNCRPD recognises this as discrimination against people on the basis of their disability. It calls on state’s parties to explore alternatives that enable people with disability to live equal and active lives.
The ACT has begun a process of reviewing guardianship laws and ADACAS will participate in this process with the aim that they become consistent with the UNCRPD.
Supported Decision Making Training
ADACAS has made a commitment to building the capacity of our community as a whole to engage supported decision making. We believe that decision making is a skill that you learn - so is supporting someone to decide. Toward this end we offer training to individuals and organisations. Training is relevant to any person who works with or supports people whose capacity to decide is impaired.
The decision support each person gives will depend on the relationship they have with the decision maker and ADACAS carefully tailors each training to ensure that it meets the needs of participants and their organisation.
The training aims to develop a culture of supported decision making among participants so that they are able to recognise and enable the legal capacity of others through support for decision making.
At the conclusion of the training participants will:
- Be able to describe issues and concepts around decision making for people whose decision making capacity is impaired
- Recognise the scope of their role within decision support
- Be able to apply the principles for decision support to their work
- Develop confidence to recognise the decisions of others, support decisions, and promote their decisions to others
- Be able to model and promote decision support to others.
To find out more about supported decision making training, contact
Kate Rea 02 6242 5060
This web site is for people who would like support to make decisions.
Use this web site to make decisions that give you more control over you own life.
Supported Decision Making Project reports