I. ‘A knife in the back’
Ella* has extensive experience as a carer. After caring for her grandfather, and then working as a personal support worker for a university student, she now cares for her grandmother.
“I’m taking her to six or seven doctor’s appointments a week, making sure she gets her socialisation, I am taking her to an exercise class to help with her breathing, making decisions with her doctor,” Ella explained.
“Without me stepping in to make sure she is looked after, she would have died. Now she can walk around the house, catch the bus. These things come from the fact that I’m educated, I have done personal care. A normal carer is given no help. They are given a payment and told not to complain.”
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Ella receives the Carer Payment, one of two government allowances for people with care responsibilities. To access this payment, a carer must provide “constant” care for a person with a disability, medical condition, or who is aged. Necessarily, the government said, “this means it takes up a large amount of time in your day and stops you from working full time.”
The Carer Payment is higher than the rate of other payments, such as Job Seeker or Youth Allowance. While Youth Allowance is capped at $562.80 a fortnight for singles, the Carer Payment can be up to $1,002.50.
“Receiving the carer’s payment is good, but it is a knife in the back in some ways,” Ella said.
The increased rate of payment leaves carers feeling as though they cannot complain about its inadequacies, because they are receiving more than other welfare recipients. Every carer Honi spoke to believed the solution to this was to raise the rate of other payments, rather than to lower the Carer Payment.
Similarly, the higher rate of payment often obscures the real problems with the government’s income support for carers.“Changing [the Carer Payment] is one of the last things that we think about, it’s just not pushed into the discussion,” Ella said.
Recipients are also faced with a 25-hour weekly cap on the amount they can work or study, including travel.
Ella believes that this is unnecessary, and that the cap should be removed. “There are other ways that the government could go about it. Carers will still be doing the care that they need to without a cap.
“For me, when I know that I’m busy, I’ll pre-make breakfasts, I’ll do what I need to do to make sure my grandmother is cared for.
“I wish I could study without guilt.”
This is a view echoed by experts on carers.
Elena Katrakis, the CEO of Carers NSW, the peak body representing all carers in NSW, told Honi, “It can take an hour for carers to travel to University, without even considering the time they need to spend studying.
“Removing the 25-hour rule would be the first thing I would do to better support young carers.”
“For a young carer studying and working part-time, it doesn’t take much for that 25 hours to add up,” said Myra Hamilton, an Associate Professor at the University of Sydney’s ARC Centre of Excellence in Population Ageing Research, whose research focuses on gender, ageing, and care.
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The demands of the Carer Payment eligibility criteria do not only weigh on its recipients, but also function to lock out most young carers from the payment.
Ella said that she wasn’t eligible for the payment when she was previously caring for her grandfather.
Alice* is a current USyd student who, with her parents, cares for her sibling with high-needs autism. She isn’t eligible for the Carer Payment because she isn’t considered a “primary carer”. This is a situation similar to that of many young carers, who often share their caring responsibilities with other family members, often parents.
“The young carers who we’ve done research with tell us that the Carer Payment has all sorts of constraints that make it difficult to access,” said Hamilton.
“They are excluded from entitlement, and Carer Allowance is much lower. It’s not meant to replace income.”
Carer Allowance is the other option carers have for receiving government support. It is a fortnightly payment of $144.80.
“It doesn’t help young carers obtain any kind of basic income,” Hamilton said. “It’s more of a little supplement to alleviate a few costs.”
The issues faced by the individuals Honi spoke to are only symptoms of a broader culture that devalues care and renders it invisible. The complexities that young carers face are not limited to the failings of government income support. They begin with self-identification and extend to feelings of social isolation, exhaustion, and financial struggle. Improving the lives of young carers is indelibly linked to improving the lives of carers and people with disabilities more generally. This cannot be achieved by merely the government, institutions, or individuals, but through a collective effort to understand disability and care as important, and universal, parts of the human experience.
II. ‘It’s just something I do’
Before young carers can access government payments, or other forms of support, they must realise that they indeed are carers, and identify themselves as such.
Alice said, “my brother is nine and I’ve been caring for him for five years, and I didn’t realise I was a young carer. I just thought I was being a helpful sibling.
“I speak to so many people who didn’t realise that they were a young carer.”
This experience is shared with Ruby*, a current USyd student who cares for her father with chronic kidney problems.
Ruby described her care as “doing a lot of chores at home, doing a lot of grocery runs, taking him to appointments, particularly specialist appointments where he needs someone to drive him there and back, as well as physical caring. That’s been a thing, when he was quite sick.” This is in addition to increased work caring for her 11-year-old brother, for who Ruby does “a lot of day-to-day activities”.
“I didn’t think of it as caring,” Ruby said, “at least, until very recently.”
“And that’s because I’ve been doing what I do for my whole life. It’s not something that just started and I had to pick it up, it’s just something I do in my family. It’s not out of the norm.”
“One thing that comes up all the time in our work is young carers saying to us: ‘I didn’t know I was a young carer until somebody told me I was one, because I was just helping’,” Hamilton told Honi.
In part, it is this familiarity with the caring experience — the sense that care work is an ordinary part of being a member of the family — that prevents many young carers from realising that this label applies to them.
Ella said that “the boundaries between being my grandmother’s best friend and her support worker are blurred.”
“I go to cafes with my grandmother, I go to movies with her. But so do support workers.”
This is a line which society-at-large still struggles to find. Ella said that the distinction between carer and friend or family was one that acted as a barrier to government support, “Centrelink never told me that I could get a companion card”. This would have decreased the cost of accompanying her grandmother to venues, such as movie theatres and events.
Access to companion cards is something given to private support workers in the course of their care work. This is just the first way in which private care workers are treated differently to young carers who support their family or friends.
Both Ella and Alice pointed out the fact that young carers are not only important to the person they care for, but for the wider community. They both noted that support workers can be paid up to $100 an hour for their labour, whereas young carers are provided meagre financial support, if anything at all.
“I’m getting crumbs and they’re getting dollars,” Ella said.
“The NDIS won’t let immediate family be paid,” Alice noted, because it is “a conflict of interest”.
“They undervalue young carers to the max.”
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When speaking to Honi, young carers expressed their frustration with the difficulty in accessing support services for their care work.
Ella said that “there is support available, but unless you know about it, you can’t access it. I, for example, didn’t realise that I could get respite care.”
Ella and Alice both said that they were fortunate that they know where they can get help, but that this was only because of their caring experience, and external training: Ella has worked as a private support worker, and Alice has a Certificate III in care work.
But therein lies the problem: the burden of finding resources to help with being a young carer is placed upon the carer themselves. “Because this information is not readily available, it’s very hard to access it,” Ruby said. Inevitably, young carers have less free time than most. The need to spend this seeking out support resources is indicative of the way society, and its support systems, are failing them.
“I know things are out there, I just don’t have the time,” Ruby continued.
Alice said, “I try to resource-share, and I’m currently establishing a community to do that. I’m trying to resource-share because I meet so many young carers and I’m like ‘wow, your experience is so valid’.”
There are support services available — Carers NSW is one such service. Apart from raising awareness, Carers NSW works alongside stakeholders, including government, to improve outcomes for carers, and guide carers on where to access support, like respite services. Carers NSW is currently working with schools to improve the identification of young carers and link them in earlier with support services.
Nationally, Carers Gateway is the main government-run support to carers. Still in its infancy, after being rolled out in 2020, Carers Gateway hosts support groups, counselling, and online courses specifically for carers.
However, access to these services remains contingent on people identifying as carers, and then knowing that structural support exists. Helping carers begins with valuing them. As Katrakis told Honi, “I think there needs to be broader community awareness about carers.”
III. ‘People definitely don’t understand’
Financial support and support services can only help young carers so much. Ideally, they should function to enable carers and those they care for to flourish in the community. Indeed, the way governments and NGOs approach carers’ issues is a product of how society approaches and values care work and disability. For those who Honi spoke to, that approach is one which misunderstands and isolates carers.
Being a young carer is something which can often be in itself challenging.
Alice, who is in her first year of university, talked of having “severe burnout” because of the combined demands of care, social, work, and academic responsibilities. Ella said that she has experienced “mental health crises every couple of months” while being a carer.
Both Ella and Alice found that institutional mental health support was inadequate for carers. Ella recalled “I can go to the doctor, because he doesn’t believe me and won’t put me onto a mental health plan.” Alice said “my parents can’t help me with psychology or psychiatry appointments. So just an appointment with the psychiatrist to get a prescription can cost $350.” Often therapists are ill-equipped for the issues carers face. It can be difficult to find experienced psychologists, given expertise with carer’s issues is not often advertised.
Care work can also establish a divide between young carers and their peers, when it comes to going to social events.
“When I was starting uni, all the people you know started going to events, but I couldn’t go because I had to do so and so, and that was a day-to-day thing,” Ruby told Honi.
Alice recalled, “When I was in Year 12, being a carer, I didn’t even have the respite of going to study for the HSC. Whereas people would go to the library together, I would spend so long studying by myself at home. That was really isolating.”
But it is clear that care work itself is not the only cause of isolation and feelings of frustration. While care work may pose challenges, the fact that many people do not understand, or are not accommodating towards young carers, greatly exacerbates these difficulties.
“It’s hard to talk about it,” Alice said. “It’s hard to talk to people who don’t understand; they don’t understand the extent of it. They ask, why can’t you go out, it’s not a big deal? And you feel like, ‘no, it is’, otherwise things at home won’t get done if you don’t do them.”
“There’s not enough validation at a social or familial level,” Alice continued. “It’s hard to talk about how much work you’re doing, especially to friends when you’re young. People definitely don’t understand.”
Alice said that she was fortunate to become good friends with another person who grew up with extensive caring obligations. “We let each other have the space to be like: this is our life.
“When you have these conversations, when you have the space to say ‘this sucks’ and ‘I feel exhausted’, it is freeing. It is freeing when I meet young carers. I try to offer the space to be that kind of support, and to say ‘your experience is valid’.”
While finding other young carers can be a source of relief, we need to develop people’s wider competencies in understanding and empathising with young carers.
One area of improvement is in the workplace. The demands of paid work are linked with the ability of young carers to meet their care obligations, to attain financial security, as well as reduce burnout and mental health challenges.
“I’m very lucky in terms of the work that I do (I work in a school and do tutoring),” Ruby said.
“But I realised, when I started work, that I couldn’t do a lot of things, say, working in a supermarket, where there are regular shifts, because things can change at home so quickly.”
Alice had a similar experience: “When I was working at IGA, and I would say ‘sorry I can’t come in, I’m looking after my brother,’ they would say, ‘what do you mean?’”
Ella said that she had started her own business, working from home. This is something which young carers frequently do, Hamilton said. But Ella expressed her frustration, that because of her care work, she was unable to access work opportunities which would allow her to use her Honours degree in Sociology.
“We’ve heard quite a bit about how important having flexible employers or flexible universities are to young carers,” Hamilton said.
“We should have policies that mitigate disadvantage.”
Hamilton’s recommendations were echoed in a recent Senate committee report into Care and Work, which made multiple recommendations that companies should be required to offer more flexibility to carers.
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The stigmas around young carers become more complicated, depending on the person they care for. Hamilton noted that “young carers of a family member with a mental illness did much worse when it comes to a range of outcomes”, when compared to young carers of a family member with a disability or a chronic illness.
While Honi spoke only to carers who had completed, or were completing, university degrees, many young carers face systematic barriers to entering educational settings.
“We did a study on young people with complex service needs, young people who were in contact with tertiary service systems, like out-of-home care, corrective services, homelessness services,” Hamilton said.
“Lots of them were young carers. But the service system was really focused on addressing the immediate concern — supporting them to find a foster placement or referring them to crisis mental health services.
“Because their needs were so complex, their care role became secondary to services.
“It’s such a shame because it means that their really important caring role, and the needs arising from their caring role, are not addressed.”
Hamilton noted that some families are “worried that people will make assumptions about whether their children are safe and are having their needs met,” if their children identify as carers.
“Some parents say ‘we’re worried that Child Protection Services will be on us’, and they’re just fearful that people won’t understand, so they would rather not put their hands up and say that their child is a carer, for fear of that lack of understanding in the community.”
That lack of widespread understanding in the community on the role that young carers play further harms them, leaving them isolated, with little support. Indeed, to best support young carers, and carers more broadly, we need to change our perceptions of care itself.
IV. ‘We need to have a new conversation’
“I do think I am discriminated against, in the same way a single parent could be discriminated against,” Ella said.
Care work is systematically undervalued. Support workers, in disability or aged care, are chronically underpaid. Financial support for family carers is minimal. Most people are unaware of the nature and importance of being a carer.
This is not an isolated aberration. It is deeply entwined with the historic feminisation of care: the norm that women were to engage in unpaid care and domestic work while men entered the workforce.
“It is certainly a feminist issue,” Ella said. “We know how much value care work contributes, and how much money it saves them. We know how being a mother, how much this contributes to society.”
Equally, the way we understand care work is entwined with society’s harmful views towards people with disability, a neglect which has been powerfully exposed by the recently released Final Report of the Disability Royal Commission.
“People have the idea of infantilising people with disabilities. So, when I would tell them that I was exhausted, they would be like ‘why are you being so mean’,” Alice said.
Disability advocates have been arguing for years, as it was put in the Royal Commission Final Report, “to have disability treated as part of human diversity.” This is a precondition to allowing people with disability to live with dignity, the protection of the human rights of people with disability, equality and respect, and to have their human rights protected.
In the same way disability should be seen as an ordinary aspect of being human, so should care work. All of us, at some point, will need to provide care, or be cared for. For the experiences of young carers to improve, we should see care work as not rare, or unusual, but something which is integral to the provision of dignity and respect to people with disability or long-term health problems.
While the financial value of young carers’ work is something that was a source of frustration for those Honi spoke to — a tangible representation of the way their care is undervalued — it would be a mistake to only tie the value of young carers to its economic impacts. As Michelle Lee argued in her recent Quarterly Essay, only seeing care work as an economic issue allows society to abrogate its responsibility to allow carers and people with disabilities to thrive.
Increasing the Carer Payment, and removing the barriers to accessing it, is one place to start. Better identification systems, more flexible workplaces, and universities are others. But all the issues facing young carers can be traced back to one thing — the fundamental devaluing of care.
As Hamilton said, “We need to have a new conversation where care is viewed as a really valuable public contribution, rather than something private.”
Helplines:
Carers NSW — 9280 4744
Carer Gateway — 1800 422 737
Lifeline — 13 11 14
