SmallTalk Speech & Language Therapy

30/04/2026

I’ve been thinking a lot about the difference between my life on Medicare / Pharmaceutical Benefits Scheme and my life on the National Disability Insurance Scheme, and honestly… it feels like I’m living in two completely different countries.

On the one hand: me, with a chronic condition I have called Ulcerative colitis. About 1% of the population has it and I was diagnosed with it around the same time Mikey was diagnosed with autism (coincidence? I think not).

To be fair, living with it wasn’t always easy. I had to try a whole parade of other medications first. Fail them. Prove I’d failed them. Get specialist approval. Tick all the boxes. It was a process. But then I got approved for Vedolizumab… and ever since, it’s been beautifully boring.

This is a biologic drug that in the US costs something like $6,000–$8,000 per infusion, every two weeks. So roughly $12,000–$16,000 a month, or $150,000–$200,000 a year to keep one person functioning. In Australia? I go to the pharmacy. I pay about the price of a nice sandwich. No one asks me to submit a quarterly reflection on my colon.

Every six months my gastroenterologist says, “is it still working?” I say yes, he says “Cool, carry on,” and that is the entire administrative burden of having a lifelong, expensive, unpredictable disease. Also, notably, no one says, “Have you considered that managing your immune system is really a personal responsibility issue?”

On the other hand: Mikey, and the NDIS.

Same country. Same government. Entirely different genre.

NDIS is less “here is the treatment for your condition” and more “please submit a novel, preferably peer-reviewed, with appendices.” To access support, I obtain multiple reports, ensure each one says the same thing with slightly different wording, upload invoices one by one like I’m feeding coins into a parking meter, and then re-prove annually that my child has not, in a surprise twist, woken up without a severe disability.

Every year the system gently asks, “Are you sure he still needs help?” and I’m like, yes, he actually needs more now.

The wild part is that the money involved is not even that different in scale. My medication, if I lived in the US, would be somewhere around $200,000 a year. Mikey’s supports can also sit in that kind of range to keep one small human safe, regulated, and able to exist in the world. Not that we GET that. But it’s how much it WOULD cost to manage it if I weren’t over here doing a good chunk of it.

But the experience is completely different. For me, it’s a known disease with a known treatment, so the system just quietly gets on with it. For him, it’s a known, lifelong disability, and the system asks me to prove it again, ideally in PDF form.

I think the difference is this: Medicare says, “We trust doctors.” NDIS says, “We trust… eventually. After six reports. But also maybe we won’t. Depends on the vibe. LOLS.”

And here’s the part that has been making me feel slightly more philosophical, and slightly less like throwing my laptop out the window. When Medicare was first introduced, it looked a lot like the NDIS does now. People said it would cost too much, that it would blow out the budget, that it would be abused, that it would destroy personal responsibility, that it would never be sustainable. Gough Whitlam introduced it. The Liberal Party did their best to get rid of it. Bob Hawke finally brought it back from the edge. Doctors protested, insurance companies protested, it was blocked, dismantled, rebuilt, and argued about for years before it settled. The sometimes messy but glorious process of democracy at work.

And now it is one of the most normal,unquestioned parts of Australian life. No one is out here suggesting I privately fund my own colon. The only reason I even know the real price of that medication is because I joined an online support group for people with the condition and many of them are in the US. THEY on the other hand are VERY aware of the cost.

So I am, cautiously, hopeful. Medicare is a 50-year-old system that has had decades to stabilise. The National Disability Insurance Scheme is still young, still being argued over, redesigned, and stress-tested in real time by families like mine. Maybe one day it will land in the same place: less proving, more trusting, and ideally fewer PDFs.

Until then, I’ll be casually picking up my six-figure medication for $30 while attaching my seventh document explaining that nothing has, in fact, dramatically improved with my son since last Tuesday.

Australia is a magical place

28/04/2026

Our society is renegotiating our social contract. And at the moment the NDIS is the most visible part of it.

Has anyone else been reading the many many articles over the years about cost blow outs in the NDIS thinking, ah yes, this is what happens when an economy built on invisible labour is asked to produce a receipt?

Because once you take seriously the idea that societies develop around who bears costs and who captures benefits—it becomes very hard to ignore that, for a long time, the “care sector” in countries like Australia wasn’t really a sector at all. It was a person. Usually a woman. In a house. Doing everything. For free. With no superannuation and only vague promises of appreciation on Mother’s Day. With help from other women (her mother, her sister, her mother in law) if she was lucky. And with the constant feeling that as someone that wasn’t financially contributing, what she was doing was less valuable.

This wasn’t written into legislation in quite those words, but it might as well have been. Childcare, disability support, aged care—these were treated less as collective responsibilities and more as private arrangements to be handled within families. The state hovered politely at the edges, funding a bit here and there, but the core assumption was stable: someone at home would absorb the work. The entire system rested on that quiet, continuous extraction of labour that didn’t appear in GDP and didn’t generate invoices, but without which nothing else functioned. If a woman in this scenario asked for a man who could economically support her well while she did all of this, she was called a gold-digger. The man was never called a labour-digger.

Then, somewhat inconveniently for the model, women stopped agreeing to this as a full-time economic role. They entered the workforce, quite reasonably expecting to be paid actual money for their time, and the invisible scaffolding holding up the care economy began to creak. The labour didn’t disappear—it just became visible, scarce, and, worst of all, expensive.

Enter the National Disability Insurance Scheme, Australia’s ambitious attempt to modernise this arrangement without entirely rethinking it. Instead of the government directly providing care, it hands individuals funding and says, in effect, “Here is your budget, please go and assemble a functional support system in the marketplace.” It is a very elegant idea, if you assume that care behaves like a normal economic good and that a sufficient workforce will simply appear when money is offered.

Care, however, is not a toaster. It cannot be mass-produced, it resists automation, and its “productivity gains” are limited by the stubborn requirement that a human being be physically present, paying attention, and exercising patience. Good language skills are also often necessary, more so than in many other physically demanding jobs. So the system develops a curious personality. It is quite comfortable funding things that look like modern, professional services—therapy sessions, assessments, reports—because these fit neatly into our idea of legitimate expenditure. They are measurable, credentialed, and reassuringly finite.

It is much less comfortable funding the thing families actually need most, which is ongoing, day-to-day help. The kind of help that used to be quietly supplied by women and is therefore, at some deep institutional level, still assumed to be available in the background. The result is a system that will fund a beautifully written report explaining your child’s needs, while you personally continue to function as operations manager, support worker, and emergency response team, often without pay and occasionally without sleep.

At this point, someone inevitably appears—often in the comments section of a newspaper—and says, “Well, people should pay for their own children.” It is a clean, satisfying argument, and like many clean, satisfying arguments, it becomes less convincing the longer you look at it.

Because children, inconveniently, are not just a private good. They are also the future workforce, the future taxpayers, and the future people who will keep systems like healthcare, aged care, and, indeed, disability support running at all. When parents raise children, they bear most of the costs—financial, emotional, logistical—but a significant portion of the benefits flows outward to society. The child you painstakingly teach to eat vegetables and eventually hold down a job will, in due course, help fund services for everyone else.

In economic terms, parenting produces large public spillovers. In practical terms, it means society quietly relies on work it does not fully pay for, and then occasionally expresses surprise when that arrangement starts to strain.

This becomes particularly stark in disability. Here, the “have children at your own expense” argument turns into something closer to a high-stakes lottery. Most families will be fine, statistically speaking. Some will not. And for those families, the costs are not marginal; they are life-defining. If you insist that this risk be borne entirely privately, you are effectively saying that a small group of people should absorb an enormous burden for what is, from a societal perspective, a shared human reality.

Modern systems like Medicare exist precisely because we have decided, in other domains, that catastrophic risk should be pooled. Illness is not treated as a personal financial failure; it is something we collectively insure against. Disability sits in that same conceptual space, which is why the NDIS exists at all, even as everyone nervously watches the cost.

And the cost is, undeniably, large. This is the moment where policymakers experience a kind of institutional vertigo, because what the NDIS is gradually revealing is the true price of care once it is no longer invisibly supplied. For decades, the system appeared affordable because a significant portion of the work was being done off the books, inside households, by people who were not paid for it. Now that the bill is arriving, it looks alarming—not because the need has suddenly appeared, but because it is finally being counted.

This is where the demographic reality quietly enters the conversation. If you push too hard on the idea that families should bear all the costs and risks themselves, people adjust. They have fewer children, or none at all. This is not theoretical; it is already happening across much of the developed world. And while this may solve a short-term budget problem, it creates a longer-term one, because the systems we are trying to sustain depend on a steady flow of future contributors.

So we end up in a deeply uncomfortable middle ground. We recognise that care has public value and that risks like disability should be shared, at least to some extent. We build systems like the National Disability Insurance Scheme to reflect that. But we remain reluctant to fully accept the financial and structural implications of replacing what was once provided for free.

The result is a system that is at once generous and insufficient, rational and slightly delusional. It funds what it can easily justify, hesitates over what it cannot, and quietly assumes that families will absorb the difference. Which they do, because there is no alternative, and because the alternative—simply not providing care—is not one we are willing to contemplate.

We are living through the slow transition from a set of institutions that relied on hidden extraction within households to ones that attempt, imperfectly, to make that labour visible and shared. The difficulty is that we have not yet decided how much we are actually willing to pay for that transition. Until we do, the system will continue to feel exactly as it does now: indispensable, expensive, and faintly surreal, like an economy that has just discovered that the most important work was never really accounted for in the first place.

27/04/2026

Can we talk about this please? This isn’t an ndis advocacy space, but it is a space run by a bunch of parents who are directly affected when sh*t like this gets published.

I actually think the NDIS DOES need reform, and I do believe that there needs to be community level services outside the NDIS to support families (see our public thriving kids submission for our position on this topic).

However - as a mum who was up all night with an autistic child with sleep challenges, who is currently waiting for sleep dentist availability via public system whilst her kid is in screaming pain with tooth ache but can’t access general dental clinics run for public dental services, and can’t afford private options because she can’t work because of an unpaid carer responsibilities that far exceeds regular parental role - this can get in the bin.

Where exactly are the “benefits” Mark? Is it in the multiple appointments a week to have therapist and allied health services that my two kids desperately need? A need btw which is magnified by the fact that almost every single space and system is inaccessible and my kids are forced to work twice as hard to do every day things?

Or is the benefits you refer to all those times my kids experience ableism, discrimination and frankly awful treatment from others because of our society? Like the time my kid read the comments section of this article online and cried because of what people said about kids like him?

Oh wait - I know!!! It’s the hours and hours I spend on the phone with the NDIS checking anxiously if I can cover a particular continence item for my child via his plan or if it’s not allowed and will get my kids plans cut or micromanaged if I buy it.

Or maybe the incredibly difficult review meetings where I have to talk about every detail of my kids private experiences in the most deficit way possible just because if I mention their strengths and progress instead of the hard bits, they’ll lose access to their much needed therapy.

Frankly - this needs to get f*cked. My kids and I deserve better and so does every other human being.

The journalists writing these pieces and setting the disabled community on fire with their bs need to get in the bin.

Enough already.

24/04/2026

Opinion | "Even without tempering military spending, there are plenty of clear, viable solutions to the government’s cash flow problem," writes Grace Tame.

https://www.crikey.com.au/2026/04/24/ndis-cuts-reforms-affected-people-disability-defence-funding-grace-tame/

23/04/2026

24/03/2026

A reward is NOT the same as a paycheck!

Re-posting as a friendly reminder that it is a false equivalence.

This infographic was made with the input from this community, and I am so grateful for your input.

20/03/2026

Well, this ridiculous headline has caused quite a stir.

And it makes me mad, because it's SO misleading.

Firstly, it makes it sound like disabled people are using NDIS money to pay for movies, haircuts, etc.

People who say this clearly don't understand the NDIS. Funding is exceptionally strict, with very strict categories and for a lot of us, often multiple levels of approval.

We cannot buy things wth it. It's not just money in our pockets. We're not buying holidays and computers and entertainment with it, because we literally can't.

We might be able to get SUPPORT to do things, like hiring a support worker to help us do things, like leave the house, buy groceries, and interact in the community.

Or get, y'know, assistive tech and stuff that helps us live.

I have seen so many rage-baiting articles, posts and comments, from media, from politicians, and from random people.

That the NDIS is a scam, that disabled people are a "burden"" on the budget; that we just shouldn't exist.. Or that there is a story of one person doing the wrong thing, so everyone must be (I mean participants here, we all know there are dodgy providers that need to be cracked down on: but also, the NDIS itself, with its systems and processes and harm it causes, but that's another story). But we as participants often cop the brunt of the backlash. Just check the comments section of any news outlet on any NDIS story.

And honestly, it's disgusting these opinions are rife in the mainstream.

Because 20% of people live with a disability.

AND YOU CAN BECOME DISABLED AT ANY TIME. You literally have no say in the matter. You could be in a car accident. You could fall over and break your spine and never be able to walk again. You could catch a "cold" and be permanently disabled and chronically ill from it. Health is so fragile. Not to mention that time disables us all.

And when you're in a situation where you can't cook, can't clean, can't eat, and can't leave the house without support, maybe you'll look back and wish you hadn't held the opinion of: "disabled people don't deserve to live/leave the house/it's not our problem".

When getting support to do basic everyday tasks causes outrage, it shows we have SUCH a big problem when it comes to attitudes about disability. And media and politicians have a big role to play in that.

Why?

Well, because they think we're easy targets.

Not to mention they'd rather everyday people be mad at the NDIS than realise the BILLIONS OF DOLLARS the government gives in tax breaks to billionaires and big business. Oh, and not to mention, themselves, and the ridiculous amount of politician salaries and benefits.

Cost-cutting should NOT come at the cost of our basic human rights.

And as I keep saying, IT DELIVERS 2.5X THE ECONOMIC BENEFIT FOR EVERY DOLLAR SPENT. It's actually one of the BEST things for the economy, because it creates so many flexible jobs, empowers disabled people, and changes and saves lives.

But we can see where this anger is going.

We see that there will be yet more cuts, yet more disabled people suffering, and dying, as they already are.

It's like they don't even see us as human beings.

And man, that needs to change.

More disabled people in parliament, media, and leadership, please

Image description: Oh, look, another misleading headline from misinformed journalists spreading disabled hatred. There is a screenshot of an article by Luke Kinsella that says NDIS spends $12b on support for walks, movies, haircuts. The NDIS spent 11.6 billion on social and community support for participants last year, including cafe visits, and dog walks, driving nearly a quarter of the scheme's ballooning cost as Labour attempts to rein in a big budget deficit. Below the screenshot, Zoe's words continue: This headline is purposefully misleading.
We literally can't spend NDIS money on things like this. We pay for support workers to support us to do things we otherwise couldn't. And if your take is: disabled people shouldn't be able to leave their homes and have access to the community, just know: time will disable you, too. ALSO if you want to talk about government spending, how about the billions in tax breaks to big business? The NDIS delivers 2.5x the economic benefit for every dollar spent.

20/03/2026

New from John Delmenico on the disinformation surrounding the NDIS: https://theshot.net.au/uncategorized/the-media-wants-disabled-people-to-be-locked-inside-until-they-die/

28/09/2025