Making supported decisions

Do you have a say in decisions that affect your life? From choosing where you want to live and which dentist you want to see, to where you want to go on holiday and what work you’d like to explore, these are important decisions for all of us.

For people with disability, especially those with cognitive or intellectual disability, the right to make decisions about themselves is often overlooked – and the consequences can be devastating.

Making decisions and choices about your own life is a basic human right.

If you feel like you’re not being given the opportunity to exercise this right, supported decision making can help.

What’s supported decision making?

Supported decision making is a legal framework which promotes the rights of people with disability to make their own choices.

It usually involves support from a team of trusted people chosen by the person with disability – often it’s family members, friends or advocates. The team will work with the person to help them to understand information, express preferences and make informed decisions.

The person or people who help make decisions are called ‘Decision Supporters’. They don’t make decisions for people with disability, rather they help individuals to come to their own decisions about the choices they want to make.

How does it work?

To date, there have been limited formal guidelines around supported decision making, perhaps due to the fact that everyone involved in it is so diverse.

However, in early May 2023, the National Disability Insurance Agency (NDIA) released a new supported decision making policy. You can find information about the policy, how it will be rolled out, and how it was co-designed with people with disability here. There are summary documents and Easy Read versions too.

The policy will be implemented during 2023 and beyond, and it’s designed to empower National Disability Insurance Scheme (NDIS) participants to make decisions that relate to their plans and funding for themselves.

That policy is for supported decision making and how it relates to the NDIS, but there’s also a report from the Disability Royal Commission that’s definitely worth a read! You can find standard and Easy Read versions, as well as an explainer video with transcript, here.

Out of this report has come a recommendation for ‘nine universal principles’ to inform a framework for supported decision making. The first four were conceptualised in 2014, while the remaining five came from a recent review.

The nine principles allow consistency and guidance for people with disability who need supported decision making and provide support and expectations for the team assisting with the process.

The nine principles are:

1. The equal right to make decisions – understanding that all adults have the right to make decisions about their own lives and have those decisions respected.
2. Support – everyone who requires support to make decisions must be provided with access to that support.
3. Will, preferences and rights – whether it is their will, an indication of what they prefer, or their human right, it directs decisions that affect the lives of people who use supported decision making.
4. Safeguards – there must be effective safeguards in the laws, legal frameworks and policy frameworks to prevent abuse or influence of the people with disability using supported decision making.
5. Principled approach to supported decision making – the person with disability’s stated or perceived ‘will and preferences’ must be kept at the heart of decision making.
6. Best interpretation of will and preferences – in the rare times when the person with disability’s will and preferences have not been able to be drawn out, a decision should be made based on the best interpretation of what the person’s will and intention would likely be.
7. Dignity and risk – taking risks is important. However if, in limited circumstances, the person with disability’s decision will place them at risk of serious impending physical or financial risk, with lasting consequences (including criminal or civil action), and they cannot understand the consequences, even with support, alternative decision making may be applied with the person’s personal and social wellbeing as a priority.
8. Distributional equity – people who have struggled to access supported decision making should be given priority in new programs.
9. Co-leadership of people with cognitive disabilities – people with cognitive disabilities, and their supporters, should lead consultation and design on reform and initiatives related to supported decision making.

Getting started with supported decision making

How can you, or someone you know, organise supported decision making?

For people with disability: Talk to someone you trust about it. You could share this article with them.

If you have a support provider you’re working with, you could find out if they offer supported decision making.

If they don’t, Inclusion Australia has lots of resources, developed under the leadership of people with intellectual disability, which can help get you started – and you might be able to share them with the people you’d like to work with to start supported decision making.

Or you may like this resource, funded by the Department of Social Services and designed by Western Australia’s Individualised Services.

For potential supporters: As well as using the above resources, South Australia’s Office of the Public Advocate has compiled a list of free training resources to understand supported decision making and some of the ways you can support a person with disability by adopting it.

You’re in control

Much like any skill, you’ll get better at supported decision making by practising. If you’ve never had the opportunity to make decisions for yourself, it can feel unnatural or overwhelming when you start making your own choices.

But it’s worth persisting. Remember, making decisions about your own life, and having autonomy – that’s making informed decisions of your own free will – is your human right.

It’s not about being perfect or making the ‘correct’ decision every time. It’s about having the dignity to make mistakes and learn from them. It’s about being able to make choices that are right for you, not what other people think is best for you.

It’s your life to live and you are in control.