On this page:
Supported decision making
The right to support to make decisions
Substitute decision making
Supported decision making
Supported decision making means to give someone the help they need to make more of their own decisions. Another word for decision is choice.
Getting support to make decisions is something that we all do. When we are unsure about a decision, we often talk to someone we trust about it. We might ask them for information and advice to help us think about the positive and negative consequences of our decision.
There are two types of decisions that we all make; small decisions and big decisions.
Small decisions are the everyday day choices we make like what we eat for breakfast, what music we listen to and what we choose to wear.
Big decisions are big life choices like where we live, where we work, getting married and going on a holiday.
People have their own experience of how easy or hard it is to make a big or small decision. We usually spend more time thinking about hard decisions and are more likely to seek help from the people we trust.
Many people with disability have not had experience at making their own decisions because other people have made those decisions for them. This is particularly true for people with complex needs and behaviours of concern.
Reflect:
- What decisions does the person you support make?
- Have those decisions been based on their will and preference?
The right to support to make decisions
Everyone has the right to make big and small decisions and everyone has the right to receive support to make decisions. This includes people with disability.
Supported decision making is based on the belief that with the right support, everyone can make decisions.
Supported decision making involves the decision maker and the supporter.
The decision maker is the person who gets support to make their own decisions.
Supporters are the people around the decision maker. Supporters might be close supporters like family or friends or other supporters like paid workers or acquaintances.
This is my mum, Jasmine. She is my supporter.
When you support a decision maker to make a decision you:
- Help them get the information they need to make the decision.
- Make sure they have information in the way they can understand it.
- Help them to think about the options, including the positive and negative outcomes of each option.
- Support them to make a decision based on their own will and preference (their own beliefs, values and everyday likes and dislikes).
- Help them to tell people about their decision.
- Help them act on their decision.
When Lily was in year 12 we needed to decide what she would do when she finished school. Her teacher took the class to visit different work programs but Lily couldn’t remember which one she liked. I knew that the only way I was going to understand how Lily felt about each program was to visit them with her.
We visited 4 different programs together and I took photos of the places and the person who showed us around. I showed Lily the photos and asked her which program she liked best. I did this a few times and she clearly liked one in particular, so I organised a half day trial at the program.
When she came home, she was really happy telling me she had fun and she saw some friends from school and she would like to go there next year.
Reflect:
Think about one small or big decision that the person you support might like to make.
- What information do they need to make this decision?
- How do they need the options given to them so they understand them?
- How are you going to help them communicate what they want?
- How are you going to help them act on their decision?
Substitute decision making
There are times when substitute decision making may need to occur. If it is not possible to understand a person’s will and preference then a substitute decision should be made based on what that person would choose if they were making the decision themselves. Substitute decision making should only be used as the last resort and the substitute decision maker should always choose the least restrictive option.
Case study
Jacob has Down syndrome and was diagnosed with dementia. He lives on his own in a unit next door to his mother Mary. He has always been a very independent and social person. Since his diagnosis he had become more dependent on his family and was no longer able to communicate verbally. Some members of Jacob’s family felt that he needed to go into an aged care facility. Mary, who was Jacob’s legal guardian, agreed that he needed a lot more support. Mary worked with Jacob’s speech therapist to make sure every attempt was made to understand what he wanted. Unfortunately she could not get a clear response from him.
Mary new Jacob well and she knew that he would hate the idea of leaving his home. She didn’t want to make a decision that he wouldn’t be happy with. Mary decided that she would try everything she could to allow Jacob to continue living in his home for as long as possible. She arranged for his NDIS plan to be reviewed so Jacob could get more support at home. She also contacted an advocacy service to help her talk to the NDIS about the support Jacob now needs.
It might be useful to share the following Conversation cards with the person you support about their right to get support to make decisions.