Supported decision-making for the elderly and cognitively impaired – having a say in how you live your life is a fundamental human right

Supported decision-making is an essential concept for everyone, especially in a society with an aging population and increasing rates of dementia, Alzheimer’s, and other cognitive impairments. It can also strike at any point in our lives with an unexpected accident-related head injury or the onset of a disease or illness resulting in a stroke or brain injury that affects our mental capacity.

Protecting the rights of individuals with disabilities, mental health conditions, and cognitive impairment is critical. Yet, the process isn’t always straightforward when someone’s decision-making capacity is questioned.

Often, an attorney or guardian steps in under an Enduring Power of Attorney or through court-appointed roles, taking control of financial, health and lifestyle decisions on behalf of the individual.

As the legal landscape evolves, understanding changes around supported decision-making is vital for everyone. Imagine if you were diagnosed with a cognitive impairment – wouldn’t you still want to have a say in decisions affecting your life?

Unfortunately, many people in this situation find themselves side-lined; decisions are made on their behalf without meaningful consultation. An attorney or guardian often makes choices such as moving an individual into an aged care facility without allowing the individual to have their say.

There must be a shift to empower individuals to maintain their voice and independence as much as possible, regardless of their cognitive or physical challenges.

Supported decision-making fosters a more inclusive society where everyone’s choices are respected. By prioritising these conversations, we advocate for the most vulnerable among us and push for reforms that honour people’s right to be heard and have control over their lives.

What is supported decision-making?

Supported decision-making is a concept that recognises the rights of adults, particularly those experiencing cognitive decline, to actively participate in decisions about their lives with the right support.

Rather than making decisions for them, it focuses on providing the right support to help them understand their choices and express their preferences.

This represents a shift in values when Australia signed the United Nations Convention on the Rights of Persons with Disabilities in 2007.

The Convention recognises that all people with a disability, or that has a decision-making disability, have the same rights as everyone else, including:

• The right to make or participate in making decisions about their own lives;
• The right to participate in society;
• The right to get the support they need to do these things.

These rights shift the focus away from a person’s capacity to fully understand everything about a decision, and onto the support a person needs to understand a decision, express their preferences about options, and participate in the decision-making process.

There is still much more to be done in changing the way people think about decision-making, particularly in health care settings and the aged care system.

However, the new Aged Care Act will focus on supported decision-making and establish a clear legal framework for registering “supporters”. The Act will include principles and duties to guide supporters through supported decision-making and help protect the autonomy of older people through a supported decision-making model.

Supported decision-making and measuring someone’s legal capacity

All adults are presumed to have the capacity to be able to make decisions about their lives, unless there is evidence to rebut this presumption.

A person’s decision-making capacity can fluctuate over time due to various factors, such as their health, the environment, or the support they receive. For example, someone with dementia may have good and bad days, and a person recovering from a stroke might see their capacity improve over time as they recover.

Instead of viewing someone as permanently unable to make decisions, supported decision-making allows an adult to maintain their autonomy when they can, while ensuring they receive the necessary assistance during challenging times.

An assessment of a person’s decision-making ability is specific to a particular time and decision.

Interestingly, the law establishes different rules that apply when testing someone’s capacity to make decisions. For example, the test for different issues may require a higher standard, such as if someone is giving instructions to write a Will. On the flipside, there’s a much lower standard when testing capacity for people who want to get married.

Given that the law recognises that capacity can vary depending on the issue and circumstances, it stands to reason that adults who may be considered unable to make a Will for example, should still be supported to enable them to express their wishes and preferences for other important aspects of their lives.

How supported decision-making differs to what has been in place in the past

In the past, individuals’ rights to make decisions have often been removed and ‘best interest’ substitute decision-makers appointed in the form of guardians or administrators and attorneys if a person is deemed to not have the capacity to make such decisions.

This tendency is changing. Currently, in Queensland, Victoria and Tasmania, even if a guardian or administrator or attorney is appointed, the law requires that they apply the principles of supported decision-making to ensure that decisions they make reflect the person’s preferences – unless, in exceptional circumstances, there is a clash between the person’s rights to autonomy and their safety.

What type of decisions can someone be supported to make

When discussing supported decision-making, the types of decisions in question relate to financial matters and personal, health and lifestyle decisions. This may include decisions about where an individual lives, what healthcare they receive, consenting or refusing medical treatment, and investment decisions.

It can be any decision; we need to ensure people have a voice.

By allowing people to make decisions with support, we give them the dignity and autonomy they deserve, while protecting their right to have help and assistance in making decisions.

Formal guidelines outlining how supported-decision making works

Unfortunately, there is no agreed set of principles in Australia for supported decision-making yet, but there are principles which the Australian Law Reform Commission has recommended in a report in 2014, and the Disability Royal Commission recommended Supported Decision Making general principles in 2023.

The Disability Royal Commission (2023) – recommended Supported Decision-making General Principles include:

1. Recognition of the equal right to make decisions
2. Presumption of decision-making ability
3. Respect for dignity and the right to dignity of risk
4. Recognition of the role of informal supporters and advocates
5. Access to support necessary to communicate and participate in decisions
6. Decisions should be directed by a person’s own will and preferences and rights
7. Inclusion of appropriate and effective safeguards against violence, abuse, neglect and exploitation
8. Co-design, co-production and peer-led design processes
9. Recognition of diverse experiences, identities and needs
10. Entitlement to culturally safe, sensitive and responsive decision-making support.

In its 2021 final report and recommendations, the Royal Commission into Aged Care Quality and Safety also noted the importance of supported decision-making to ensure people have as much control and choice as possible over their own lives and care.

The new Aged Care Bill which is going through Parliament currently is also expected to introduce a framework for supported decision-making for individuals receiving aged care services. This is designed to empower individuals in the aged care system to make their own decisions with the necessary support.

The Bill emphasizes that decision-making capability exists on a spectrum, and with appropriate support, individuals are capable of making decisions for themselves.

Substitute decision-making vs supported decision-making: what’s the difference?

Substitute decision-making, in contrast to supported decision-making, is limited, and is only allowed as a last resort in exceptional circumstances It is where someone takes over entirely and substitutes a decision by their own.

In the new Aged Care Bill, supporters are required to act in accordance with a hierarchy of supported decision-making principles, which prioritizes the individual’s will and preferences. If these cannot be ascertained, the decision should be made based on the individual’s likely will and preferences.

The framework also mandates that supporters act honestly, diligently, and in good faith, promoting the personal, cultural, and social wellbeing of the individual.

Attwood Marshall Lawyers – supporting people through every stage of life

Attwood Marshall Lawyers has a dedicated team that practices exclusively in elder law, Wills and estates, and aged care.

With three Accredited Aged Care Professionals on our team, we represent many clients who need someone to advocate for them during difficult times. Our lawyers and aged care professionals know the aged care sector inside out, and can provide guidance, advocacy, and assistance to ensure your best interests are protected.

Whether you need assistance with your estate planning, including drafting an Enduring Power of Attorney, or you need access to attorney services, or advice when transitioning to aged care, we can help.

To discuss your unique needs, please contact our Aged Care and Wills and Estates Department Manager, Donna Tolley, on direct line 07 5506 8241, email dtolley@attwoodmarshall.com.au or free call 1800 621 071.