06/10/2026
A long but interesting read…
In the UK, we have Carer’s Allowance, but as we know it comes nowhere near reflecting the true value or cost of the care that unpaid carers provide every day. Eligibility is also affected by earnings, meaning many carers receive little or no financial support despite dedicating countless hours to caring responsibilities.
At the same time, the cost of paid care is more often than not extremely high, both for families who fund their own support and for local authorities. Social care remains one of the largest areas of public spending, yet unpaid carers continue to save the system billions of pounds each year through the care they provide.
It raises an important question: if unpaid carers were no longer able to provide that support, how would the system cope?
When Does Mum Become a Support Worker?
Here is a strange question. Imagine the government agrees that a disabled person needs 40 hours of support a week and agrees to pay for it. An unrelated support worker provides those 40 hours and gets paid. The person’s mother provides exactly the same 40 hours and gets nothing. At what point did the work stop being work?
New Zealand has spent more than two decades trying to answer that question, through discrimination cases, appeals, some fairly extraordinary legislation and, most recently, a new Disability Support Services Act in 2026. Australia has been wrestling with almost exactly the same issue through the NDIS, but from a very different starting point.
And the difference between the two countries tells us quite a lot about the peculiar way we value family care.
Imagine your adult daughter has a significant disability and needs help with everyday life. The government agrees that she needs that help and agrees that it should be publicly funded. If Sarah from an agency comes to your house and provides the support, Sarah gets paid. If you provide exactly the same support, you get $0. Why? You’re her mum.
Around the beginning of the 2000s, a group of New Zealand families looked at this arrangement and said, essentially, hang on. Their complaints eventually became the Atkinson case.
The government’s position was that families normally look after one another. There is obviously some truth in that. I make my children dinner, drive them places, comfort them when they’re upset and listen to extremely lengthy accounts of playground disputes. Nobody needs to send me an invoice template.
But these families weren’t asking to be paid for making sandwiches. They were caring for people whose disabilities created support needs significant enough that the government had already agreed to pay someone to provide them. The strange part was that the work acquired a monetary value when performed by somebody outside the family and lost it when performed by a relative.
The families argued that excluding them from payment simply because they were related to the disabled person amounted to discrimination on the basis of family status. They won. The government appealed. The families won again. The government appealed again. The families won again.
In 2012, the New Zealand Court of Appeal upheld the finding that the policy was discriminatory. The government then decided not to appeal to the Supreme Court.
New Zealand had arrived at a rather awkward point. If the government had already decided that particular disability support was necessary and worth paying for, it needed a proper justification for why the person providing it suddenly became free when she happened to be Mum.
This presented another problem: money.
If you have an enormous workforce currently recorded in the government accounts as MUM — $0, and somebody points out that some of those mums are actually performing disability-support work that would otherwise have to be purchased, changing the number from $0 can become expensive rather quickly.
So in 2013 New Zealand introduced Funded Family Care. Family members could now be paid in some circumstances. Progress! Except the government was sufficiently worried about the cost that it also passed legislation saying family-care funding needed to remain within “sustainable limits” and that families generally had primary responsibility for the wellbeing of family members.
It also restricted people’s ability to bring further discrimination complaints about family-care policies, which was certainly one way of dealing with repeatedly losing a discrimination case. The courts had effectively said, “This policy is discriminatory.” The government’s response was roughly, “Fine, we’ll change it. Also, perhaps nobody should sue us about the new one.”
That arrangement didn’t settle things either. The restrictions remained controversial for years and, in 2020, New Zealand repealed that part of the law. The government itself described it as discriminatory. Eligibility for funded family care was expanded and payment rates increased.
Then the argument moved on again. A case called Fleming eventually reached the New Zealand Supreme Court and raised questions about the legal and employment status of family carers who were already being paid. Think about how far the debate had travelled. The question was no longer simply whether a family member could ever be paid. Family members clearly were being paid. Now everyone was arguing about how those arrangements should legally work.
That brings us to 2026 and New Zealand’s new Disability Support Services Act. The legislation now expressly recognises the concept of a paid family carer. Existing arrangements under which family members are paid can continue, and New Zealand is developing further financial and practical support for family carers, including looking at payments and respite.
So over roughly a quarter of a century, New Zealand has travelled from “You’re family, therefore we don’t pay you” to having legislation that actually recognises people who are simultaneously family members and paid carers.
Meanwhile, across the Tasman, Australia has taken a different route.
The NDIS generally doesn’t pay family members to provide funded supports except in exceptional circumstances. So our starting question isn’t really, “Why shouldn’t Mum be paid?” It’s closer to, “Can Mum prove that this family is unusual enough that she should be?”
This is where a 2025 Australian case called Scaramella v NDIA gets very interesting.
Romina Scaramella was 26 and had Level 3 autism, intellectual disability, epilepsy, Type 1 diabetes and other significant conditions. Her mother Rosanne provided extraordinary amounts of care, including personal care, behavioural support, epilepsy management and extremely intensive diabetes monitoring because Romina couldn’t reliably recognise or communicate dangerous changes in her blood sugar. Rosanne was reportedly getting only a few hours of interrupted sleep a night.
Rosanne wasn’t asking the NDIS to pay her for every hour she spent caring for her daughter. She asked to be paid for 38 hours a week of defined disability-support work.
The NDIA said no. She went to the Administrative Review Tribunal and won.
The Tribunal ordered funding of about $2,361 a week for Rosanne to provide 1:1 support. But this is the part I find particularly interesting: it didn’t decide that Mum could now do everything and everyone else could go home. It also funded 72 hours a week of external high-intensity support, along with nursing, behaviour support and specialist support coordination.
That is remarkably close to the model I keep wondering about. Mum remains Mum. Mum is also paid for a defined amount of extraordinary disability-support work. Other support workers remain involved. Professionals remain involved. There is oversight. The disabled person develops relationships and support outside the family.
The NDIA had argued that paying Rosanne would effectively amount to income replacement. The Tribunal didn’t accept that argument. There is a difference between saying, “Mum can’t work because she’s caring, so give Mum some money,” and saying, “Romina requires 38 hours of funded disability support and Mum is providing those 38 hours, so pay for the support.”
Rosanne was also Romina’s guardian and NDIS plan nominee, so there was an obvious potential conflict of interest if she was also being paid. The Tribunal recognised that conflict but treated it as something to be managed rather than something that automatically made the arrangement impossible.
Then we get to my favourite part: value for money.
The Tribunal considered what might happen if the existing arrangement, involving a completely exhausted mother providing extraordinary amounts of unpaid care, eventually collapsed. The alternatives could include hospitalisation or institutional care.
Suddenly the economic comparison isn’t “pay Mum $123,000 a year or let Mum do it for free.” It becomes “what does it cost to keep this home-care arrangement safe and sustainable, and what will government have to purchase if it collapses?”
Now we are doing economics.
Australia has had several other NDIS cases involving family members seeking payment, with some succeeding and others failing. A pattern is beginning to emerge. Very high support needs matter. Evidence that the care goes well beyond ordinary family responsibility matters. Evidence that suitable outside workers have genuinely been difficult to find matters. Evidence that the current unpaid arrangement isn’t sustainable matters. Having external workers and safeguards matters too.
What Australia hasn’t really done is what New Zealand was forced to confront after Atkinson: why is unpaid family care the starting assumption in the first place?
Nobody is suggesting parents should be paid for ordinary parenting. I have three children. I would very much enjoy submitting an invoice for locating school shoes, making spaghetti and listening to detailed explanations of why somebody else’s sister was mean at lunch, but I accept Treasury may have concerns.
Extraordinary disability support is different.
Imagine someone needs 70 hours a week of support specifically because of their disability. Mum provides it and the government records the cost as $0. Eventually Mum can’t sustain it anymore and the NDIS has to purchase those same 70 hours from support workers. At $70 an hour, that’s about $255,000 a year.
The person’s disability hasn’t suddenly become more severe. The amount of care hasn’t changed. The only thing that changed was the identity of the person doing the work.
Yesterday, Mum providing 70 hours cost the system $0. Today, support workers providing 70 hours cost roughly $255,000 a year. Apparently the most powerful cost-saving technology ever invented was giving birth to the disabled person first.
There is an obvious middle ground. We don’t have to choose between Mum doing everything for free forever and Mum becoming the entire disability service.
A person could receive ordinary unpaid family care, alongside perhaps 20 or 30 or 40 hours of paid family disability support. They could still have external support workers, respite, therapy and professional oversight. The family member could have defined duties, training requirements, superannuation and limits on paid hours. Conflicts of interest could be managed. There could still be a deliberate plan to build the disabled person’s relationships and independence outside their family.
New Zealand reached this argument through discrimination law. Australia is inching towards it through individual NDIS cases in which families have to demonstrate exceptional circumstances.
I think the question we ask matters. “Should parents be paid to look after their disabled children?” immediately makes it sound as though someone wants the government to start paying me for making toast.
The better question is this: when disability creates extraordinary support needs that government has already accepted should be publicly funded, why should the person providing some of that support normally become ineligible for payment simply because they’re family?
New Zealand has spent more than two decades arguing about that question. Australia may eventually have to as well.
Until then, we will continue using the extraordinary accounting system in which professional disability care is expensive, while the same care performed by somebody’s mother is apparently free.
The mother may lose her job, income, superannuation, sleep and several functioning vertebrae.
But those are on a different spreadsheet.
