In discussion around the NDIS, “if we’re talking about numbers, we’re focused on the wrong thing” 

As another surge of media calls out the cost of the National Disability Insurance Scheme (NDIS), disability advocate Elly Desmarchelier says we need to remember what’s at its heart - people, not numbers.

Here we go again. Same tune, just a different week. 

Australia is a couple of months out from a federal budget, which means some parts of the national media have grabbed hold of their favourite obsession to take for another spin. They’re consumed by writing just one type of NDIS story: “The NDIS is costing more than expected, so how do we rein in the spending?”

This narrative is wheeled out every few months now. In October last year, around the time of the mid-year budget, there was full-blown hysteria for weeks about an NDIS “cost blowout” and a scheme that is “unsustainable”. 

In reality, the cost of the NDIS has grown by 12 percent. It just so happens the health and aged-care budget also increased by almost this much (11 percent combined), but you didn’t hear anything about spending too much money on seniors or public hospitals.

What some parts of the media don’t want you to realise is that, when it comes to the NDIS, if we’re talking about numbers, we’re focused on the wrong thing.

In saying this, I’m not saying I don’t care about the sustainability of the scheme. Having a scheme that is built to last benefits people with disability more than anyone else. 

But for too long, in the context of the NDIS, NDIS participants have been treated as just another number.

Then, in the lead-up to the 2022 federal election, last year’s Every Australian Counts campaign to defend the scheme changed the narrative. It finally had me believing I was seen as a person.

I thought we had realised, as a country, that the NDIS is not about numbers on a spreadsheet, but about real people - accessing their communities, finding work, living independently - all thanks to a collective investment.

I thought there was finally recognition that the NDIS is not about the big dollar figures at the top, but the people at the bottom - the 500,000 Australians who rely on its supports every day to get by. 

I thought people understood that the NDIS is not a bookkeeping exercise, but a system to ensure all people with disability have their basic human rights. 

But the media outlets continuing to focus solely on cherry-picked numbers to whip up panic around the scheme are trying to erase us. If they succeed in getting enough Australians scared about large sums of money, they’re hoping we will all forget about people with disability - the people at the heart of this discussion. 

We’ll be so bamboozled by the figures, we’ll lose sight of the purpose for spending that money in the first place. 

And that’s exactly where this conversation needs to get back to - purpose. The NDIS isn’t perfect, but we must start the conversation with a clear focus on its purpose - to give people with disability choice and control over their own lives - and go from there. 

The question is, will the scaremongers quieten down long enough to let us get on with the job of delivering a sustainable scheme? Or will their voices crowd us out, reducing us once again to mere numbers on a page? 

The answer comes down to whether we’re going to listen to them anymore. You can count me out.