People with disability have the right to quality care and to make their medical treatment decisions now and into the future. Ideally, advance care planning conversations should be part of routine quality care.

Everyone is presumed to have capacity to make decisions that affect their own lives and healthcare. However, for some people with a cognitive disability, they may lack decision making capacity. So the preferences they shared in the past may play an important role in decisions. Or their substitute decision-maker can make those decisions on their behalf.

For those with disability, their families, loved ones and/or carers - a good understanding of what advance care planning is and what’s involved in the advance care planning process is important.

Engaging in advance care planning is a voluntary process and it is important to recognise that some will prefer to ask others to make the decisions on their behalf. Both advance care directives (completed by the person themselves) and advance care plans for a person with insufficient decision-making capacity (completed by someone else on the person’s behalf) can play an important role in helping people with disability live as well as possible.

Creating a plan

People with disability may want to discuss their ideas about their health and their care in case they become very sick or have an accident, and can’t make those decisions for themselves at that time. They may want to complete an advance care directive to outline their future preferences for care and/or ask someone else to make those decisions for them and appoint a substitute decision-maker.

Working with health professionals such as general practitioners, disability support workers or their specialists can help people undertake advance care planning and create an advance care directive.

Substitute decision maker

A substitute decision-maker is someone who makes medical treatment decisions on behalf of a person who is not able to do so.

It’s important substitute decision-makers understand what’s involved with being a substitute decision-maker. Substitute decision-makers may be described differently depending on the Australian state or territory you are in.

Some of the titles used are:

  • Medical Treatment Decision-Maker or Medical Enduring Power of Attorney (Victoria)
  • Enduring Guardian or person responsible (New South Wales, Tasmania, Western Australia)
  • Enduring Power of Attorney (Queensland, ACT)
  • Substitute Decision-maker (South Australia)
  • Decision-maker (Northern Territory).

For someone who lacks decision-making capacity and has a guardianship in place, there are additional steps to identify the person or process for substitute decision-making. The Office of the Public Advocate or similar in each state and territory provides more specific information and advice regarding the protections and the process for medical treatment decisions of a person under guardianship.

Training and education

Undertaking training and education is the best way for disability support workers to improve their knowledge and their confidence to have advance care planning conversations. We support disability workers to learn about advance care planning through a range of online courses, workshops, webinars and information sessions.

Find out more about training and education opportunities.

See also

Last updated: September 2023