National Carers Week 2025: Supporting 3 Million Australian Carers

In the wake of the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, one truth stands out: the safety, dignity, and autonomy of people with disability often hinge on the strength and integrity of those closest to them—carers and guardians.

Carers, often family members or close friends, provide daily emotional, physical, and social support. Their role is deeply personal and often unpaid, yet it is foundational to the wellbeing of the person they support. Guardians, in turn, are entrusted with legal decision-making responsibilities when a person with disability cannot make certain decisions independently.

This week we raise awareness of the critical role that many unpaid Carers have, and we at Focus ACT take a moment to consider the size, economic contribution and lifestyle reality of these people within our community.

The Scale of Caring in Australia

According to the Australian Bureau of Statistics, the statistics paint a powerful picture:

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**Total carers**: There are approximately 3 million carers in Australia, representing 11.9% of the population living in households. In the ACT, we have some 59,000 with caring responsibilities.

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**Primary carers**: Of these, 1.2 million are primary carers—those providing the most substantial care. Notably, 43.8% of primary carers have a disability themselves.

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**Young carers**: There are 391,300 carers under the age of 25, a significant increase from 235,300 in 2018.

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**Gender breakdown**: 12.8% of females and 11.1% of males are carers.

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**Economic value**: The estimated annual value of unpaid care provided by informal carers is $110 billion, nearly equivalent to 98% of the Federal Government's healthcare investment.

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**Employment impact**: 45% of primary carers do not participate in the workforce due to caring responsibilities exceeding 20 hours per week.

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**Financial vulnerability**: Carers are three times more likely than other Australians to be poor or very poor.

The Role of Guardians

Within the Carer group, we also have a smaller group known as "Guardians". Guardians are entrusted with legal decision-making responsibilities when a person with disability cannot make certain decisions independently. The Royal Commission strongly advocated for supported decision-making—a model where guardians act as facilitators of choice, not substitutes for it. This approach respects the person's voice and agency, ensuring decisions reflect their values and preferences.

For more information about guardianship in the ACT, visit the Public Trustee and Guardian.

What Carers Worry About

At Focus ACT we recognise through lived experience the challenge of being a carer. At different points in time all carers worry that:

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**Our voice won't be taken into account** when we speak about the needs of our person, especially in relation to education, medication and daily support needs

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**As we age, the risk that our person won't be supported** and cared for increases, especially when they are the only child and we are aging

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**We are imposing on others** an obligation to support our person – including siblings and other family members

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**Our person is at risk of homelessness** as we don't have a way to guarantee and fund their housing especially after we are gone

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**Our person will be treated in a negative way**, that they may be picked on and subjected to treatment that we are either not aware of or which we are not empowered to address

These and a range of other concerns are heard by Focus ACT. Our team has lived experience across a range of different caring obligations including being guardians for siblings, adult children and as parents for neuro and gender diverse children. We bring this experience into our day to day work.

Maintaining Professional Boundaries

We also recognise that our staff are Disability Support Workers. Whilst some friendships and relationships may come to be whilst working with clients – it is critical to keep the differences between Professional Boundaries, Personal Relationships and Duty of Care clear and distinct.

The relationship between a carer or guardian and a disability support worker is one of partnership, not substitution. Support workers must respect the carer's knowledge and insight while providing professional care. Boundaries ensure that everyone's role is clear, respected, and effective.

Focus ACT's Commitment to Carers

In Canberra, organisations like Focus ACT are leading the way in empowering carers and guardians. Through its Guardian and Client Advisory Forum, Focus ACT ensures that lived experience shapes service delivery. Its commitment to participant-led support, staff training, and community inclusion means carers and guardians are not alone—they are part of a network that listens, adapts, and acts.

The Royal Commission's findings are a call to action: to elevate the role of carers and guardians as essential partners in the disability sector, to ensure their voices are central to policy and practice, and to provide them with the resources and respect they deserve.

A Week of Recognition

National Carers Week (12-18 October 2025) is not just about awareness—it's about action. It's about recognising that behind every person with disability who lives with dignity, independence, and safety, there is often a carer or guardian whose dedication makes it possible.

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For support and resources for carers in the ACT, visit Carers ACT or contact Focus ACT to learn how we can support you and your person through our participant-led services.