19/08/2026
Yes families are subsidising the NDIS with unpaid care hours. Removing yourself from the workforce and providing care is not 'free' It costs in other ways.
From the article below:
"Neither is home schooling a disabled child because an appropriate school placement isn’t available.
Someone pays.
They pay in lost income. Lost superannuation. Careers they couldn’t pursue. Sleep. Health. Relationships. Social isolation. And years or decades in which their own choices are necessarily constrained by another person’s care needs."
Imagine if carers were paid for their time. Time they have to put in because other systems failed? The cost would be astronomical.
Now Imagine if every carer lost their supports and burned out. They relinquished their disabled child to the state government and they had to find full time foster support? If the child has behavioural or medical needs it would cost the government about $400,000- $500,000 per year.
That $30,000 NDIS plan isn't looking so bad now is it?
The Invisible Subsidy: How Families Are Propping Up the NDIS and Education System
I’ve been going down a bit of an NDIS policy rabbit hole, and I keep coming back to a question that seems almost absurdly obvious:
Why are we willing to pay almost anyone to care for a disabled person — except their family?
At the moment, if a parent provides an hour of intensive disability care, the cost to the NDIS is $0.
If a support worker provides that same hour, the NDIS might pay $70–$80.
And if maintaining care at home eventually becomes impossible and that person moves into supported independent living, the numbers become enormous. Recent NDIS data show average annual payments for autistic participants in SIL of around $500,000 per person. For people with the highest functional support needs, the figures can be higher again.
Which has made me realise something:
Families aren’t just supporting the NDIS. Families are subsidising it.
Every hour of disability support provided by a parent that would otherwise have to be purchased from a worker is effectively an in-kind contribution by that family to the disability system.
And for many families, we’re actually subsidising two government systems at once: disability AND education.
All too often, what happens when the education system cannot accommodate your disabled child?
Increasingly, the answer is: the family provides the education too.
The numbers in NSW are extraordinary.
Among children registered for home schooling, the estimated proportion with disability increased from around 35% in 2019 to 54% in 2024.
More than half.
Nationally, 5.5% of children and young people with disability could not attend school because of their disability.
And when a child ends up being home educated, the teaching doesn’t magically happen.
Someone has to do it.
A parent who might otherwise be working becomes teacher, learning-support officer, disability support worker, administrator and carer — often simultaneously. Like me.
And in NSW, ordinary registered home schooling receives no Department of Education funding.
So again, the service hasn’t ceased to have a cost.
Government has simply transferred that cost to the family.
This is what I increasingly think we’re missing when we talk about the “cost” of disability.
We count government expenditure incredibly carefully.
We don’t put a dollar value beside all the services families provide when government systems don’t.
And before someone says “Everyone has problems. Parenting is hard. Get over it”, the statistics are worth looking at.
Among carers of people with disability in 2024–25:
68.1% reported low wellbeing, compared with 33.6% of the general population.
49.2% said they were often or always lonely, compared with 18% of the general population.
And 59.9% described their health as fair or poor, compared with 22.4% of the general population.
This isn’t saying other people’s lives are easy. Of course they aren’t.
It’s saying that when you look across an entire population, families providing disability care are experiencing a level of strain that is objectively and measurably different.
And sometimes the alternative we’re told to use — just get support workers — doesn’t actually exist in the way people imagine.
I’ve been trying to find a Friday support worker for Mikey for quite a while.
We offer $75 an hour. (And that’s our money not an NDIS budget - we get $16,000 a year to be used ONLY for therapy). We live near a major transport hub and shops.
But we need someone who is good with children, physically capable of keeping up with Mikey, a confident driver, reliable, and actually available for a substantial block of hours on a Friday.
We had about two viable candidates in total.
We’ve finally found someone who can start at 2pm — exactly when I have to leave to pick up the girls — which is enormously helpful. We will now spend at least two months training them and hope they stay.
But the experience has driven home something policymakers sometimes seem to miss:
You cannot assume paid formal care exists simply because money has been allocated to purchase it.
A family can have an NDIS budget and still provide the care themselves because there is nobody appropriate available to buy that care from. I know families with large budgets they cannot spend (and jobs they cannot get to).
And when that happens, the NDIS saves money.
The family absorbs the cost instead.
The care hasn’t disappeared. Someone is still providing it.
We’ve simply moved the cost from the government’s balance sheet onto the family’s time, income, career, superannuation, health and wellbeing.
And for families whose disabled children cannot access an appropriate education, exactly the same thing can happen with schooling.
The education system saves money. The family absorbs that cost too.
Which makes me wonder whether we’ve designed the incentives backwards.
Imagine instead that families caring for people with profound disabilities could choose a package that included:
• a proper family disability-care payment
• superannuation for the family carer
• guaranteed respite
• outside support workers
• therapy and behaviour support
• opportunities for the disabled person to develop relationships and independence outside their family.
Not:
“Here’s some money, Mum. Now you do everything.”
Absolutely not.
The objective should be to make family care sustainable, rather than extracting as much unpaid labour as possible until the family reaches breaking point.
Let’s do some boring number work.
Suppose a very generous package supporting someone with profound disability at home cost government $180,000–$200,000 a year — including paying the family carer AND substantial external support and respite.
Compare that with roughly $500,000 a year for an average autistic NDIS participant already living in SIL.
Even if paying the family meant government spent an extra $80,000 every year while that person remained at home, doing that for ten years would cost an additional $800,000.
If better supporting that family delayed the need for a $500,000-a-year residential arrangement by only a couple of years, it could potentially pay for itself.
And overseas evidence suggests this isn’t a completely crazy idea.
The American Cash & Counseling experiments actually randomised disabled people into traditional agency care versus flexible consumer-directed budgets that could be used to employ family members.
Government spending didn’t necessarily fall immediately. Sometimes it increased — partly because people finally received support they had supposedly been entitled to but weren’t actually getting.
But disabled people experienced fewer unmet needs and greater satisfaction, while family carers experienced less physical, emotional and financial strain.
Which brings me back to NDIS sustainability.
We constantly ask:
How do we stop spending so much money on disability?
Perhaps we should also ask:
How much more would the NDIS — and our education system — cost if families stopped subsidising them?
Unpaid family care isn’t actually free.
Neither is home schooling a disabled child because an appropriate school placement isn’t available.
Someone pays.
They pay in lost income. Lost superannuation. Careers they couldn’t pursue. Sleep. Health. Relationships. Social isolation. And years or decades in which their own choices are necessarily constrained by another person’s care needs.
That doesn’t mean carers don’t love the people they care for.
Love and labour can exist simultaneously.
And if eventually a family simply cannot keep providing that labour, government may suddenly discover just how valuable its enormous invisible family subsidy was.
I don’t think families should be paid to provide all the care.
Disabled people need lives outside their parents. Parents need lives outside caring. There need to be external workers, respite, safeguarding, oversight and genuine opportunities for independence.
And I certainly don’t think the answer to children being excluded from appropriate education is to pay parents to home school them instead. The first obligation should always be to make education genuinely accessible. But I suspect that if home schooling cost the education department money they would have more incentives to modify that school environment and help the child to remain there.
But when families nevertheless end up providing enormous amounts of disability support and education themselves, pretending that labour has an economic value of zero gives us a completely distorted picture of what our disability and education systems actually cost.
There is an enormous space between:
“You’re their family, so you should do this for free.”
and
“Now that you can’t do it anymore, we’ll pay a commercial system hundreds of thousands of dollars every year to replace you.”
Maybe somewhere in that space is a system that is better for disabled people, better for families — and actually cheaper over a lifetime.
At the very least, it seems worth properly testing
