By Susan Wallis · Originally published 25 May 2016
Original article
You’re a worker, not a carer.
I’ve just had a discussion in a closed Facebook group about the term carer versus worker.
A disability support worker had described themselves as a ‘carer’ and I couldn’t help but correct them.
Technically I’m a carer, even if I personally dislike the term. In all honesty I prefer the title of ‘mother’ but that is a discussion for another day.
The discussion was quite civil, but the disability support worker explained that some organisations describe their disability support workers as ‘carers’, causing some confusion in the industry. Fair enough. I’ve not seen that term used in that context and if I do I will correct them also. Interchange Illawarra, the disability support organisation I chair, doesn’t use that term for our workers, some who are paid and many who volunteer. The families of the people with disabilities are the carers, and we value them and show respect for their unpaid, often life–long commitment.
Loving a child with a disability is the easiest and most natural thing I’ve ever done. Whilst it’s the hardest role I’ve ever undertaken, it is also the most rewarding and I feel grateful I’m able to ‘care’ for my child, as I was very nearly robbed of the opportunity. I don’t pretend to speak for all carers; this is just my opinion and I recognise we all have our challenges and different perspectives.
I don’t want to devalue the role of Disability Support Workers either. My family could not function the same way without the worker who has supported my daughter with disabilities, as well as my neurotypical’ child, for almost 3 years. I couldn’t attend conferences or all-day meetings without her. Our disability support worker is a much appreciated and loved member of our team. And I know she ‘cares’ for my daughters and the rest of my family, but she is ‘paid’ to support. The caring is an unexpected bonus.
‘From caring comes courage.’ – Lao Tzu
So if you are a disability organisation and you refer to your paid (or volunteer) workers as ‘carers’. please don’t. And if you do, and our paths cross, I will remind you of the following facts:
The Carer Recognition Act 2010 states, “A person is not a carer for the purpose of the legislation if they only provide care, support or assistance either for payment, such as a care or support worker, or as a volunteer for an organisation, or as part of the requirements of a course of education or training.”
A carer doesn’t get paid. They don’t clock off. They can’t (and don’t want to in most cases) turn off their feelings of joy and pride, or worry and grief, because their contracted hours have finished and it’s time to go home. A carer’s shift never ends.
[Clickability update, September 2026: Here the author distinguishes family care from paid support work. The Act excludes someone who only provides support for payment, as an organisational volunteer or as part of a course; it is not a ruling on every benefit a family carer may receive. Read section 5 of the Act.]
_Susan Wallis _
Susan is the mother of 2 delightful daughters, including one with severe and complex disabilities. Susan is also the chair of Interchange Illawarra and a passionate advocate, fundraiser, freelance writer and general big mouth. Susan proudly supported the Every Australian Counts campaign in the Illawarra, NSW, undertaking every single activity the campaign requested and more.
Clickability editorial update: September 2026
How families can explain their role in a support team
Say how you want to be introduced and which responsibilities you have agreed to take on. Being a parent or partner does not mean every task should automatically fall to you. Explain the support the family needs to remain workable alongside the participant’s choices.
Use the discussion to clarify practical boundaries: who organises a roster, who handles a concern and who is available outside a paid shift. A warm working relationship still needs clear responsibilities.
For workers: use the person’s preferred language
Ask how the participant and family want roles described. Use your professional title where it helps explain the service, but listen when a person tells you a label does not fit their relationship or experience.
Respect and kindness belong in paid support. They do not remove the need for agreed duties, privacy and professional boundaries. See the NDIS Code of Conduct.
Questions readers ask
Does this article set a universal rule about the word carer?
No. It is an attributed perspective and includes a definition used for a particular Act. Ask people what language they prefer.
What does section 5 exclude from the Act’s carer definition?
It excludes someone who only provides support for payment, as an organisational volunteer or as part of education or training. Official guidance
Find a worker for the support your family needs
Use Clickability to explain the paid support you want to arrange. Compare provider profiles and reviews while you clarify roles and expectations.
