The focus is always on what the person wants

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Paul's Story

Paul changed his support worker because they did not listen to what he wanted to do. His new support person talks to him about what he wants and what will help.
Paul’s home was flooded and he had to move out.
Paul could choose to move somewhere new or stay in the same area. It was important to Paul to stay in the same area because he knows people there and it is close to Pablos Art Studio.

Learn more from Paul in this video. It is 2 minutes and 12 seconds long.

Video transcript

When I choose what I want to do I feel happy. I’m my own boss and my own human.

Hi, my name’s Paul. I used to be an IHC client and then I got asked to go flatting all on my own. Then I left them and went to Community Connections and they do heaps of things with me.

I do art for low vision people or blind people. That’s what I enjoy because there is no art for blind people.

The manager who looks after us brought Annie. She’s been the longest support person for me. Annie sits with me every day and we talk about what’s going to help and stuff like that.

Me and Annie have things in common. She loves South African food and she is South African. That’s how we got on really well.

Me and my support say I’m their boss because my hours come from Kapiti Support and that’s why I’m their boss.

I had a support person that did not listen to me so I said “I don’t want her” because she didn’t listen to what I wanted help with. I told her I need help on computer stuff and she didn’t help.

I can choose what I want to do in my life.

I had a problem at my old house. It got flooded on Christmas day. Someone left the tap going in the upstairs. They put me in a hotel until the new flat was ready.

I had a choice of living at Newtown and I said no. I want to stay where I am, around where I live because I know people around there and it’s easy for me to get to Pablos and I chose to do that.

I’m in charge of my journey because my journey is me. No one knows how a person like me thinks because people can’t see my disability. I call my disability a hidden talent, that’s what people need.

Will and preferences

What a person wants includes their will and preferences.

Will: Long-term goals and what the person values in life. Some examples might be wanting to be independent, stay healthy, or stay connected to family.
Preferences: What a person likes right now. Everyone has preferences. People communicate their preferences in different ways such as words, expressions, or gestures.

Sometimes, preferences and will don’t match. For example, we might prefer to skip our exercise and stay in bed, but we also want to be healthy. It can be hard to decide on our own when we have to balance short-term and long-term wants.

A photo of a young woman sitting in her wheelchair, facing the camera. A young man is beside her facing the camera.

Sasi’s story

Sasi needs to decide whether to have an operation on her leg.

The operation will help Sasi's goal to live independently. (Sasi's will)

Sasi doesn’t like the hospital because it might be scary. (Sasi's preferences)

Sasi's decision-supporter helps Sasi:

visit the hospital and talk with staff
understand what will happen if she has the operation
talk about her options.

Sasi finds out that she can have a support person with her in the hospital. This information makes Sasi feel happier about the option of having the operation. She decides to go ahead.

When more support is needed

Sometimes, people can't easily say what they want and what is important to them. Supporters need to:

listen carefully
watch how the person acts
notice small signs.

The supporters may need to interpret what the person wants.

Wiri’s story

Wiri has a learning disability. He doesn’t use many words.

Wiri loves visiting Aroha. Wiri and Aroha live in group homes next door to each other. Wiri’s face lights up when he sees Aroha.

Wiri’s parents suggest he shift to a new home close to them. Wiri shows he's upset by:

rocking
flapping his hands
not wanting to go to usual activities
wanting to see Aroha.

His supporters understand that Wiri wants to stay close to Aroha.

Supported decision-making is always led by what the person wants, no matter how much support they need. A person shouldn’t be left out of decision-making because they have trouble saying what they want.

The supporter tries to understand what the person wants. Usually, the decision can be based on what the decision-maker says or does. Even if that’s not an option, the supporter bases the decision on what they believe the person wants. This is called a principled approach.

Planning for the future

Sometimes, people can set what they want to happen if they become unwell in the future. This can help supporters to understand the person’s will and preferences.

This can include:

our wishes for treatment and care, especially at the end of life. An Advance Care Plan sets out our wishes generally. A Shared Goals of Care conversation sets out our wishes when we are receiving care
our wishes for who we would like to step up when needed for decisions by setting up an Enduring Power of Attorney
our wishes for treatment when mentally distressed in a Mental Health Advance Preferences Statement.

Courtney's story

Courtney experienced times of mental distress over many years. Sometimes, she was admitted to the inpatient mental health unit. Courtney made a Mental Health Advance Preferences Statement with the support of her whanau, community mental health team, and psychiatrist.

Courtney stated that if she was admitted, she wanted to be promptly given a medicine to help her rest. Courtney had been given this medication before. She found it helped her recovery.

Courtney felt better. She knew that she would receive the care and treatment that worked best for her. She knew that her wishes would be listened to.

Find out more

Find out more about the principled approach to decision-making

"Supported decision making - experiences, approaches and preferences" by Queens College Belfast. Researchers asked how people have or have not been, supported to make their own decisions.

"Diversity, dignity, equity and best practice: a framework for supported decision-making" by Australian Royal Commission external. This report explains the idea of a principled approach to decision-making. The Commission provides an easy-read summary of the report.