For generations, we’ve operated under a troubling assumption that ageing inevitably leads to losing control over your own decisions. When questions about an older person’s choices arise, our systems have typically responded by looking for someone else to decide, a substitute decision maker, an attorney or a guardian. The default has been all or nothing, either complete autonomy or none at all.
This approach has left countless older Australians silenced in matters concerning their own lives. Their preferences, built through decades of lived experience, are bypassed as systems rush toward substitute decision-making, often without exploring what support might enable them to continue making their own choices.
The paradigm shift toward supported decision-making challenges this binary thinking. It recognises that autonomy exists on a spectrum, that capacity is decision-specific rather than absolute, and that with the right support, most people can continue directing decisions that affect their lives. This shift isn’t merely procedural, it’s personal, restoring dignity and recognising the fundamental human right to self-determination regardless of age or ability.
As Karen Williams notes, the starting point should always be “presumption of capacity,” the legal principle that adults are entitled to have their independent decisions respected. The question transforms from “Can this person still make decisions?” to “What support might this person need to continue making their own decisions?” It’s a subtle but revolutionary change that holds the power to transform aged care from a system that manages people to one that empowers them.
At the 6th Annual Aged Care Week, Karen Williams, Lawyer, Social Worker and Manager of the Human Rights Service Team at ADA Australia, will be speaking about the nuances of supported decision-making for older people.
How would you define ‘supported decision making’ for older people and why is it crucial in today’s aged care landscape?
“I think the work that the Australian Law Reform Commission did in 2014, in readiness for the NDIS, in the Decision Making Principles are key. It firstly recognises independent, autonomous decision making as the starting point – as supported decision making maybe unnecessary.”
“The National Decision-Making Principles identify four central ideas in all recent law reform work on capacity. These are that:
- Everyone has an equal right to make decisions and to have their decisions respected.
- Persons who need support should be given access to the support they need in decision-making.
- A person’s will and preferences must direct decisions that affect their lives; and
- There must be appropriate and effective safeguards in relation to interventions for persons who may require decision-making support.
“The Principles reflect the paradigm shift signalled in the United Nations Convention on the Rights of People with Disabilities (CRPD) to recognise people with disabilities as persons before the law and their right to make choices for themselves.
- Support is anything that is required for a person to make, communicate and participate in decisions that affect their lives.
What are the key legal and ethical hurdles—like consent, capacity assessments and autonomy safeguards—that come up when applying supported decision making?
“Key legal and ethical hurdles are essentially, our limited understanding creating unnecessary barriers. Consent is an unhelpful term when applied in the supported decision-making area. Because, often, the next step is determining whether a person has capacity to consent. It can become a circular argument. For example, if you consider that a person may lack capacity for making healthcare decisions, then asking for their consent to assess their capacity is an invalid process. Rather, ethically, you should be asking for their agreement to conduct the assessment. This goes for many decisions.”
- From a practical viewpoint, there are insufficient health professionals available with sufficient skills to assess capacity for every decision required.
- One of the main points or paradigm shifts about supported decision making is to extend the ability of a person to make their own decisions for as long as possible.
- There’s been little investment in safeguarding a person’s autonomy in the sector, with a rush to remove decision making too early. For example, reaching out to a person’s attorney as a matter of course, rather than to the person themselves.
How do cultural backgrounds and generational experiences influence an older person’s approach to decision making and their comfort with expressing preferences?
“Cultural, Family and Generational differences impact decision-making. Many people have had limited opportunity to express their will and preference throughout their life. This can be for a range of reasons, including language, gender, social norms. It’s important to involve people to participate in their own decisions in a way that they can access. It requires knowing someone relatively well.”
Which practical strategies—such as communication tools or advocacy programs—prove most effective in helping older people confidently articulate their wishes?
“I’m currently working on a practical decision-making tool, which is part of my PHD(I) studies. ADA Law developed some guidance material in relation to the former act and OPAN are developing tools for the new Act. Having a registered supporter, or an informal supporter or an independent advocate is always an option in the New Act. Also, attending information sessions on theses options is also a great idea.”
How can service providers better incorporate an individual’s life history and personal values when developing supported decision making frameworks?
“When a person first starts with an organisation, it is important to get to know them, as a person. Filling out forms that may never be read by anyone is not a way of achieving this. Having an interactive interview is probably the first option. Opportunities are only limited by imagination. Many older people also report that they may want to make different decisions in their future and don’t want to be always constrained by past decisions.”
What do you hope participants will learn from your session at Aged Care Week?
“Remembering that a person doesn’t necessarily need a supporter for any or all their decisions. The legal principle of “presumption of capacity” means, as adults, we are entitled to have our independent decisions respected, and not to presume that a supporter or substitute decision maker is required.”
Don’t miss Karen Williams’ session and the opportunity to gain practical insights into implementing effective supported decision-making frameworks. Register now to learn how your organisation can better respect and empower the choices of older Australians.
Ritchelle is a Content Producer for Healthcare Channel, Australia’s premier resource of information for healthcare.
