Acknowledgement of Country

We acknowledge and respect Aboriginal peoples as the state’s first peoples and nations, and recognise them as traditional owners and occupants of land and waters in South Australia. Further, we acknowledge that the spiritual, social, cultural and economic practices of Aboriginal peoples come from their traditional lands and waters, that they maintain their cultural and heritage belief, languages and laws which are of ongoing importance, and that they have made and continue to make a unique and irreplaceable contribution to the state.

We acknowledge that Aboriginal peoples have endured past injustice and dispossession of their traditional lands and waters.

Decision support as a fundamental human right

Five part series on supported decision-making. Part one, decision support as a fundamental human right.

Over the course of our lives, we will all need support to make important decisions.

When we experience disability through illness, injury, stress, trauma and the influence of major medications we may need significant support to be able to make decisions.

We can think about our decision making on a continuum.

Sometimes we make decisions independently, sometimes we make decisions with support and there may be situations where we need people to make decisions for us. This is called substituted decision-making.

Over the last ten years, in response to human rights developments, there is increased focus on alternatives to formal substituted decision-making in Australia. We are adopting practices and laws that support people to be able to make their own decisions.

The right to receive decision-making support was established in the Convention on the Rights of Persons with Disabilities. Article 12 of the Convention says people with disability must be provided with the support they need to be able to make legal decisions. For example, people have a right to support to be able to decide if they want medical treatment and to give their informed consent.

As decision support is a fundamental human right, if we can’t provide someone with the assistance they need, they may be unable to make important legal decisions. What we do or don’t do as professionals can have a big impact.

Supported decision-making challenges the idea that decision making is something we do on our own, in our heads. Our ability to make decisions is shaped by our context and the quality of support available to us. We can think about decision support as building scaffolding around people to increase their decision-making ability.

In your work

In your work, it is possible to make small changes that will create more positive decision-making environments for the people you support.  For example:

• by tailoring how you communicate information to each person
• giving the information at the right time
• allowing enough time to process it, and involving others who know the person well.

These actions can significantly change the person’s decision-making ability.

As a professional, you have an important role to play in furthering the aims of supported decision-making. You can build more positive decision-making environments by:

• Always assuming the people you support are able to make decisions.
• By asking people what is important to them and really getting to know their wishes.  If they can’t tell you their preferences ask someone who knows them well.By getting to know what the person has said they want in advanced care directives and by informal means it will allow you to better support their decision making,
• And lastly you can build more positive decision-making environments by slowing down.  Give communication the time it needs.  This might mean breaking down information into smaller chunks, repeating ideas or giving people more time to think things through.

For more information about supported decision-making please visit the South Australian Office of the Public Advocate website - opa.sa.gov.au

SAHMRI, South Australian Health and Medical Research Institute

Funded by the Australian Government Department of Social Services. Go to dss.gov.au for more information

We would like to thank the following people and organisations for their contributions to the making of this series of videos.

• Ruby Nankivell
• Carolyn Smith
• Emily Thwaites
• Michelle Browning
• FrankieFilms

Acknowledgement of Country

We acknowledge and respect Aboriginal peoples as the state’s first peoples and nations, and recognise them as traditional owners and occupants of land and waters in South Australia.

Further, we acknowledge that the spiritual, social, cultural and economic practices of Aboriginal peoples come from their traditional lands and waters, that they maintain their cultural and heritage belief, languages and laws which are of ongoing importance, and that they have made and continue to make a unique and irreplaceable contribution to the state.

We acknowledge that Aboriginal peoples have endured past injustice and dispossession of their traditional lands and waters.

Supporting guardianship to become the last resort

Five part series on supported decision-making. Part two, supporting guardianship to become the last resort.

In 2014, the Australian Law Reform Commission recommended changes to Australian laws so that they comply with the United Nations Convention on the Rights of Persons with Disabilities. This includes recognising all adults, including those with a cognitive disability, have an equal right to make decisions, and, adding supported decision-making as an alternative to substitute decision-making.

The South Australian Office of the Public Advocate welcomes legislative change that would align its work and the work of others more closely with the Convention on the Rights of Persons with Disabilities. Wherever possible we want people with disability to be supported to make their own decisions and remain in control of their lives.

We encourage the development of supported decision-making practices and policy in a broad range of sectors that will reduce the need for substitute decision-making, including the option of Guardianship, which should only be explored as an absolute last resort.

Efforts towards prioritising Supported-Decision Making is emerging across Australia’s health and disability sectors. For example, the National Safety and Quality Health Service Standards prioritising supporting a patient’s involvement in their health care in order that substitute-decision making is used as a last resort.

Currently, the Public Advocate is appointed by the South Australian Civil and Administrative Tribunal when a person who needs to make an important decision for themselves is found to have a mental incapacity.

However, the Office of the Public Advocate recognises that good decision support can change a person’s capacity in relation to their decision-making.

As such, we want organisations, services, and professionals to have access to resources that will help them build the decision-making capacity of the people who use their services.

For example, information about support for decision-making, shared decision-making tools, and documents that record people’s wishes whether formally in an Advanced Care Directive or informally.

The Office of the Public Advocate promotes exploring methods of documenting the will and preferences of people with disability who are unable to make a formal Advanced Care Directive.

The need for support should not prevent a person from documenting their wishes, or from them being followed, when decisions are needed in future.

The Office of the Public Advocate wants to encourage the recognition of informal documents in the future treatment of people with disability, in same the way all other people are able to have their Advanced Care Directive completed and taken into account when decisions are needed in future.

For more information about supported decision-making please visit the South Australian Office of the Public Advocate website - opa.sa.gov.au

SAHMRI, South Australian Health and Medical Research Institute

Funded by the Australian Government Department of Social Services. Go to dss.gov.au for more information

We would like to thank the following people and organisations for their contributions to the making of this series of videos.

• Ruby Nankivell
• Carolyn Smith
• Emily Thwaites
• Michelle Browning
• FrankieFilms

Acknowledgement of Country

We acknowledge and respect Aboriginal peoples as the state’s first peoples and nations, and recognise them as traditional owners and occupants of land and waters in South Australia.
Further, we acknowledge that the spiritual, social, cultural and economic practices of Aboriginal peoples come from their traditional lands and waters, that they maintain their cultural and heritage belief, languages and laws which are of ongoing importance, and that they have made and continue to make a unique and irreplaceable contribution to the state.
We acknowledge that Aboriginal peoples have endured past injustice and dispossession of their traditional lands and waters.

Supporting good decision-making processes

Five part series on supported decision-making.  Part three, supporting good decision-making processes.

As professionals, you are in a position to empower people with their decision-making. At times you may only be involved in one part of the decision-making process such as providing information about the person’s options.

Sometimes you may need to advocate for others who know the person well to become involved and provide support too. It is important you know all the elements of good decision-making processes so that you can advocate for and make sure people receive the support they need.

Good support for decision-making starts with helping the decision maker identify there is a decision to be made. People need to understand what the decision is about, and be made aware of constraints affecting the process such as limited time.

Next, the decision maker is supported to express their will and preferences about the decision.

That is, they need help to understand and communicate their preferences in the context of their values, priorities and experiences. The person’s will and preferences guide the options that are explored in relation to the decision.

For example, a decision about where someone will live after they leave rehabilitation in hospital would be guided by their preference to return home. As such, the options explored would focus on making the existing home accessible rather than finding new accommodation.

How options are discussed or presented must be understandable to the decision maker. Some people may need information provided in special formats. Others may need experiences of the options to be able to work out and express their preferences.

After finding and exploring options, the decision maker is supported to understand the risks and possible consequences of the options. If there are barriers to the options the decision maker is supported to think about how they might be overcome.

Continuing with our previous example, once the options for making the home accessible have been costed it may become clear that money is a barrier. The decision maker needs to be supported to work out whether they can live with only some of the changes that they can afford in their own home or whether moving elsewhere might be better.

Lastly, the decision maker is supported to weigh it all up and make their decision. Weighing up the options can involve listing the pros and cons and seeing which aspects have more weight for the decision maker than others. For example, remaining physically close to family and friends may be more important to the decision maker than being unable to use a section of the existing home that they can’t afford to make accessible.

After the decision maker has made their decision, they may need help to communicate it to others and make it happen.

In summary, supporting a good decision-making process, involves helping the decision maker to:

• identify the decision to be made
• explore their will and preferences about the decision
• find and explore options
• understand the risks and possible consequences of options
• think through barriers and how they can be overcome
• weigh up options
• and make the decision.

For more information about supported decision-making please visit the South Australian Office of the Public Advocate website - opa.sa.gov.au

SAHMRI, South Australian Health and Medical Research Institute

Funded by the Australian Government Department of Social Services. Go to dss.gov.au for more information

We would like to thank the following people and organisations for their contributions to the making of this series of videos.

• Ruby Nankivell
• Carolyn Smith
• Emily Thwaites
• Michelle Browning
• FrankieFilms

Acknowledgement of Country

We acknowledge and respect Aboriginal peoples as the state’s first peoples and nations, and recognise them as traditional owners and occupants of land and waters in South Australia.
Further, we acknowledge that the spiritual, social, cultural and economic practices of Aboriginal peoples come from their traditional lands and waters, that they maintain their cultural and heritage belief, languages and laws which are of ongoing importance, and that they have made and continue to make a unique and irreplaceable contribution to the state.
We acknowledge that Aboriginal peoples have endured past injustice and dispossession of their traditional lands and waters.

The experiences of a decision maker

Five part series on supported decision-making. Part four, the experiences of a decision maker.

Hi my name is Ruby. I live with an intellectual disability. I work at SACID as an inclusion worker. I work at Purple Orange. I love my William Syndrome group and doing event with them. And I’m here to share my story today.

Health decisions I’ve needed to make is to decide to go to hospital or not and to have my knee surgery. And I needed help with women’s health as well.

The GP helped me by explaining what kind of surgery I would need if I went to see the knee surgeon and to get a referral to go and see the knee surgeon. The knee surgeon explained to me what I was going to have but in easy words that I understand, than big words and that helped me to feel better and less stressed, cause I didn’t know how I was going to react and cope with surgery and recovering. He also changed my life for the better he made my knees good again.

The nurses helped me when I was stressed or nervous about the surgery, reassuring, like everything’s gonna be good, and we’ll see you after and we’ll help you. So they helped me to feel more calm and relaxed and less stressed and worried.

One time I was in hospital they didn’t treat me like an adult, and they way I wanted to be treated. I want to be able to make my own choices, but also be added into the decision when it came to it. And then one time they wanted to move me to another room, and they didn’t really explain what was happening very well. So then I called my mum, and she asked could you ask them to wait just till I get there so I understand as well? And they said no. So I called her again and told her to come in.

My mum asked where I was going. They explained it to me. In the end I said to them I was happy to go home instead of staying and I wanted to make my own choice, as well as having my mum who spoke up for me and helped me advocate.

The advice I would give the SA Health professionals is treat us the way that we wanna be treated. Treat us like adults, with respect, kindness, support, understanding and help us when we need it the most, and understand what our experience is like and why we are in the hospital.

Supportive decision making is important because we make decisions every day, and our choices can be the better thing of our life and what decision we make, and we can live our life happy and enjoy them. I’m so honoured and I hope this helps people. Have a good day and thankyou for looking after all of us. Love you lots. [kisses with hands]. Bye.

For more information about supported decision-making please visit the South Australian Office of the Public Advocate website - opa.sa.gov.au

SAHMRI, South Australian Health and Medical Research Institute

Funded by the Australian Government Department of Social Services. Go to dss.gov.au for more information

We would like to thank the following people and organisations for their contributions to the making of this series of videos.

• Ruby Nankivell
• Carolyn Smith
• Emily Thwaites
• Michelle Browning
• FrankieFilms

Acknowledgement of Coutnry

We acknowledge and respect Aboriginal peoples as the state’s first peoples and nations, and recognise them as traditional owners and occupants of land and waters in South Australia.

Further, we acknowledge that the spiritual, social, cultural and economic practices of Aboriginal peoples come from their traditional lands and waters, that they maintain their cultural and heritage belief, languages and laws which are of ongoing importance, and that they have made and continue to make a unique and irreplaceable contribution to the state.

We acknowledge that Aboriginal peoples have endured past injustice and dispossession of their traditional lands and waters.

The experiences of a decision supporter

Five part series on supported decision-making.  Part five, the experiences of a decision supporter.

So supported decision-making for me is all about giving the control and the power to the person. It’s all about respecting who they are, no matter where they are on their journey. At the heart of wherever you are on the decision-making spectrum is, knowing who that person is, knowing what’s important to them, slowing everything down, and giving them the time that they need to express themselves and for us to find out what’s important to them so they can drive the decision-making process.

As you say, Mark and I were together as best friends for 25 years and have a couple of kids together. And he was a fiercely intelligent, strong, fiery, smart, funny man, really funny man. And about a year ago, his behaviour started to change, and we thought it was mental health, but unfortunately it ended up being a Glioblastoma multiforme brain tumor, and that was causing significant behaviour change and health issues and our world changed from that point on.

It is a really tough thing to do, to sit down and ask someone what does it look like for you at the end of your life? What I came to realise over the next ten months it’s really about talking to someone about what they value, what’s important to them. What does a good quality of life look like to you? We had lots of conversations, and so I was very, very clear on what Mark wanted which was autonomy, dignity, purpose and meaningful life. That’s what was important to him.

Mark was running three or four times a week, working full time in a senior role. He was doing really well. And then there was just a couple of little things that started to happen. Drop of the lip, getting tired. We did an MRI and it was suggested that there was some regrowth and that we should do a proactive early intervention operation.

So Mark went in and had the operation and the operation went really well. But unfortunately, after about three or four days, Mark just started to deteriorate. And Mark got to hospital and unfortunately, the cancer had rapidly spread. Inviting the palliative care team in for me was really important because I wanted them to see who Mark was before he was lost to us.

So they got to see his wicked humour. They got to see his sharp mind. They got to see his love for me and our children and what they heard first hand from him what was really important to him. So then they could take that into consideration when they were thinking about treatment.

The palliative care team did an amazing job to make sure that he was comfortable, but I noticed one day he had a little, there’s a little bit of stiffness. He wasn’t communicating anymore. I called the doctor in and I said, I’m just wondering what am I seeing here? And it did turn out that Mark was on a couple of antipsychotic medications that were actually being used for nausea.

As the advocate, knowing Mark really well, knowing that autonomy and dignity were really important to him, this was not dignified. This was not Mark anymore. So they were very quick, so responsive to me as his supporter, acknowledging that I know him best and heard me, respected that and said right let’s change it. What can we put him on that will still fend off nausea, but so that he’s still with us. They took him off it straight away.

The next day, Mark was back. He was back. He was talking again. He was making jokes, and we got to have this beautiful extra two days, which doesn’t sound like a lot but it was instrumental not just in our processing of our grief but there were some things there that happened for Mark that I don’t think would have happened had he been on major medications that was taking him away from us and himself.

He had some moments that I believe helped him have a good death. So I’m so grateful to all those health workers who did an extraordinary job to see Mark, to hear me, to respect us, and got it so right. So for me, the philosophy of supported decision-making, even though a lot of people don’t realise that’s what they’re doing, they are doing it when they hear the person, when they are driven by what the person wants, their will and preference.

When they are listening to the supporter and recognise good support, and see their advocacy as something that’s really meaningful in the interaction.

For more information about supported decision-making please visit the South Australian Office of the Public Advocate website - opa.sa.gov.au

SAHMRI, South Australian Health and Medical Research Institute

Funded by the Australian Government Department of Social Services. Go to dss.gov.au for more information

We would like to thank the following people and organisations for their contributions to the making of this series of videos.

• Ruby Nankivell
• Carolyn Smith
• Emily Thwaites
• Michelle Browning
• FrankieFilms