The NDIS was designed for people like my brother. So why are we making his life smaller?

That picture is my Facebook Memory for today: a very cute photo of my brother and I as tiny humans. Seeing it flash up made me happy for a moment. And then the considerably less cute memory of what happened in Parliament this week flashed back into my mind, after a conversation with my Dad this morning about what this all means.

Because with the passing of the latest NDIS legislation, my brother's future world just became a little more uncertain, and potentially a whole lot smaller.

My brother has significant intellectual disability as the result of a birth injury. It is lifelong. It is severe. He requires support 24 hours a day, seven days a week.

He lives in Supported Independent Living with another disabled gent, in their home.

Not a facility.

Not an institution.

Their home.

He has a small, regular team of support workers who know him extremely well. Two of those workers provide most of his house-based support. They support the ordinary, repetitive, essential stuff of life: navigating his daily routines, household tasks, meals, personal needs, safety, transitions and all the hundreds of little things most of us do without assistance or thought.

But perhaps even more importantly, they know him. 

They know his rhythms. His communication. His preferences. What makes him laugh. What unsettles him. When something is wrong even when he cannot necessarily explain what is wrong. They know how to support him without unnecessarily escalating a situation.

One of these workers has supported him for more than five years. Let that sit a minute – especially if you know Disability and Support Work – that’s not all that common. Disability support work is quite a transient field sadly, particularly for those people who aren’t just ‘take me to a café and have a coffee’.

And that matters.

Then there are his community support workers.

They help him get out into the world.

He spends time with other people with disability — and with people who aren't disabled.

He goes places.

He practises using public transport. He practises ordering his own food. He practises cleaning up after himself. He practises making choices, interacting with people, navigating community spaces and doing the things that the rest of us simply call living.

And I deliberately use the word practises.

Because significant intellectual disability doesn't disappear because someone has been taught something once.

For my brother, this is lifelong learning.

He will continue to learn and practise these things throughout his life, and he will continue to require another human being alongside him while he does them.

He is not going to "graduate" from disability.

He is not going to become independent if we just capacity-build hard enough.

And that is okay. Because “independence” was never supposed to be the price of admission to an ordinary life.

You should be able to see by now - My brother is exactly the kind of person the NDIS was apparently designed for…

·         Permanent disability.

·         Significant functional impairment.

·         Lifelong support needs.

Without disability support, he cannot independently access the community, live safely on his own, use public transport independently or participate in ordinary social life in the same way that most Australians can.

So I’d really like them to explain this to me:

Why has the Government decided that people like my brother should have their Social, Civic and Community Participation budget allocations cut by 50 per cent, purely at the whim of the Disability Minister, and a government trying to balance a budget sheet?

Not because his disability has improved.

Not because his support needs have halved.

Not because it suddenly costs half as much for a support worker to help him leave his house.

But because it's a line item on a budget sheet the Government budget needs to be made smaller.

Since the 4500 submissions made by disabled people, those who love them, and those who support them during the Inquiry - The Government has been very careful to say that his critical 24/7 supports will remain protected. And I'm glad for that, obviously.

But I cannot believe that we have reached a point where this is being presented as reassurance...

Because keeping a disabled person fed, housed, clean and safe is NOT the same thing as allowing them, heck, ASSISTING them live a reasonable life.

A life happens outside the front door too.

A life is going to the shops.

Catching a bus.

Having lunch.

Seeing familiar people.

Choosing where you want to go.

Learning how to order something yourself for the four-hundredth time because you still need prompting on the four-hundredth time.

Being known in your local community.

Having somewhere to be.

Having relationships outside your home.

You know? Having ordinary experiences that aren't therapy, aren't personal care and aren't simply the maintenance of your physical existence.

Participation is not a luxury support.

It is the difference between living in the community and merely being housed somewhere within it.

And now, since the passing of this abominable legislation - from 1 October, as plans are progressively renewed and reassessed, the Government intends to reduce Social, Civic and Community Participation budget allocations by 50 per cent, alongside a 10 per cent reduction to Capacity Building Daily Activities.

For someone who actually uses those supports, what exactly are we expecting of them to choose between here? What must they now cease to participate in?

Which outing?

Which relationship?

Which opportunity?

Which day outside the house?

Literally - which part of his life has the government collectively decided was excessive?

And at almost the same time, another change is creating pressure on the workforce that supports him at home, which was the other half of the discussion with my Dad this morning - Changes to the SCHADS Award concerning sleepovers took effect from 1 June.

For the uninitiated, a sleepover shift is exactly what it sounds like — but probably not what you imagine when you hear “night shift”. A support worker stays overnight in the disabled person’s home, usually after supporting them through their evening routine and before supporting them again the following morning. There is an eight-hour overnight period where the worker is not expected to be awake and actively working. They are provided with a room and a bed and are able to sleep — but they must remain on the premises and be available if the person needs assistance during the night.

So, for someone like my brother, a familiar worker might support him through dinner, medications, his evening routine and getting settled for bed; sleep in the staff room overnight while remaining available if something happens; and then get up and support him with his morning routine, breakfast and transition into the day. It is an incredibly practical model of support for people who need someone available 24 hours a day, but don't necessarily need someone actively awake beside them every minute of the night. And importantly, it has allowed the same familiar support worker to be there at bedtime and still be there when that person wakes up - for someone with significant intellectual disability, that continuity can matter enormously.

Previously, an inactive overnight sleepover could operate as a break between periods of rostered work. And usually the support workers under this arrangement are paid a good wage for this, and  Under the new Award arrangements, where a worker performs rostered duties immediately before and after an eight-hour sleepover, those periods are now treated as part of one continuous shift. The sleepover itself no longer constitutes the rest break between separate shifts.

Now, of course, I agree, there are really good industrial reasons for properly regulating working hours and protecting disability support workers from unreasonable rosters. Support workers deserve safe hours, decent wages and proper conditions.

This is not an argument against those protections.

But policy does not exist in a vacuum, and not all Disability Support Work is done in the same way. This is something the Fair Work Commission are completely ignoring in the reality of life for many disabled folk in SIL accommodation, where this sort of roster is more commonplace.

The practical consequence for some SIL models is that long-established rosters built around one familiar worker supporting a person through the evening, remaining for an inactive overnight, and supporting them again the following morning become harder — and potentially substantially more expensive — to maintain.

And when those models become unworkable, providers don't magically manufacture another person who already knows my brother.

They roster someone else.

And suddenly a small team must by necessity become a bigger team.

Which means more people coming through his front door.

More unfamiliar faces in his home.

More handovers.

More variation.

More people who have to learn his communication.

More people who don't yet recognise the tiny signs that tell someone who knows him, something isn't right today.

More opportunities for misunderstanding and distress.

For many people with significant disability, continuity of support isn't a nice little customer-service bonus.

It is part of what makes the support safe.

Support workers who spend years alongside somebody can become incredibly important people in their lives. Those relationships can become family-like — not because professional boundaries disappear, but because trust, familiarity and shared history matter enormously when another person is intimately involved in your everyday life.

And I find the prospect of losing that continuity genuinely frightening. I feel sick to the very core of my being. My Brother's Mental health is just beginning to improve since the loss of our Mother in January. We have all been working so hard to stay afloat. This is just another thing threatening to destabilise his world. And therefore, ours.

So I keep coming back to the same question:

Who plugs the gaps?

• When community participation funding is reduced, who takes him out?

• When rosters become harder to sustain, who fills the shift?

• When providers can't make the numbers work, who absorbs the cost?

• When there aren't enough familiar workers, who walks through his door?

• When a formal support system withdraws, who does government imagine quietly picks up the work?

Because the need doesn't disappear.

The need never disappears.

It is simply transferred somewhere else.

·         To another worker.

·         To a provider.

·         To a family.

·         To an emergency service.

·         To a health system.

Or, perhaps most cruelly, back onto the disabled person themselves — who simply goes without.

·         Who stays home.

·         Who loses an outing.

·         Who loses a relationship.

·         Who sees fewer people.

·         Whose world becomes incrementally smaller because somebody, somewhere, has successfully made a spreadsheet look better.

I understand that the NDIS needs reform.

I understand that its growth needs to be sustainable.

I absolutely support tackling fraud, exploitation, poor-quality providers and money being spent on things that do not improve disabled people's lives.

Because I need the NDIS around to care for my Brother as we age.

But let me be clear -

• Fraud is not committed by my brother going out to buy groceries, to  visit a park or to play music with a support worker.

• Waste is not my brother learning to catch the bus.

• A System Failure is not a man with significant intellectual disability requiring lifelong assistance to participate in his community.

Those are not aberrations from what the NDIS was created to do.

They are kind of the whole point of it.

We spent decades moving people with disability out of institutions and arguing that they had the right to live ordinary lives in ordinary communities.

We should be very, very careful about creating a modern version of institutionalisation where someone's address is technically in the community, but their funding only allows them to remain inside it.

My brother deserves more than survival.

He deserves relationships.

He deserves familiarity.

He deserves safety.

He deserves the dignity of making choices.

He deserves to keep learning things even when he will never completely master them.

He deserves to be seen in his community.

He deserves a life that extends beyond the walls of his house.

And frankly, I am furious that in 2026, I apparently still have to explain why.