The NDIS's wider reputation is at an all-time low. How did we get here?

There's been a shift in the public sentiment towards the NDIS in recent times. 

The scheme was introduced with bipartisan support in parliament a decade ago, and it has gone on to transform hundreds of thousands of lives.

Some participants now have access to the help they need to shower in their own homes, get out of bed, or eat full meals for the first time.

Far more people with disability now live independent lives thanks to the NDIS, while some even swear the scheme saved their life.

But recently, discussion has shifted to the problems: the rorting, bureaucracy and surging costs.

Those problems are real and need addressing.

But for many people with disability, it can feel as though the rest of the community has forgotten why the scheme exists in the first place.

Cuts to the support the NDIS provides to some of our most vulnerable citizens once seemed unthinkable. But today it isn't.

The NDIS has many well-documented problems. But now it has another one — a PR problem.

So, how did we get here? And what's the solution?

Political discourse

The NDIS is now more expensive than Medicare and isn't far off matching spending on defence. Because of that, it draws a lot of scrutiny — and rightly so.

This week's budget papers show the NDIS will cost $48.5 billion this financial year. Looking forward, it projects it'll be $52.3 billion in 2025-26 and up to $63.4 billion by 2028-29.

And that's factoring in that the government is closing in on reaching the 8 per cent per year growth target it set two years ago. At that point, the scheme was growing at more than 20 per cent year-on-year.

The numbers are impossible to ignore, and so this is often what our politicians focus on when discussing the scheme.

The government has worked hard to make sure voters know that its recent changes — such as strict lists about what participants can spend money on, set funding periods and fraud crackdowns — are already bringing cost projections down.

The upcoming "foundational supports", meant to shift some of the load back to the states and territories, and a new assessment process are expected to help, too.

But advocates say the increasing focus on the numbers, at the expense of the people behind them, appears to have damaged the brand of the NDIS and is hurting participants and their families.

They're already anxious about how those changes to the scheme will impact their lives.

A sledging match this week between the major parties showed how the human element of the scheme can be overshadowed by debate about numbers.

It started when the Coalition's Jane Hume suggested the scheme was "out of control" and "more can be done" to change that.

Several Labor MPs seized on those comments, saying it was proof Coalition had "secret plans for cuts".

That supercharged the anxiety across the disability community.

Steph Travers, board director at People with Disability Australia (PWDA) and a NDIS participant, says recent discourse has made her and the community feel like a political football.

"Ten years ago, both sides championed this as a great social support scheme to advance the rights of people with disability, to be able to control their own supports and to who enters their house to be able to provide those supports," she says.

"Now we are just a number. I feel as if my life has a dollar value on it."

The media's role

It's also worth considering this.

• Bloated NDIS cost blowout as CEO paid more than PM
• 'Rorts galore': NDIS keeps getting bigger and bigger
• Louis Vuitton and $45K to a drug trafficker: NDIS spending scandal
• NDIS farce: Pensioner dad paid $200K to fulfil absurd request
• NDIS' inefficiencies are 'costing us a fortune'

Those are all headlines from different media outlets over the last few months, and the comments sections inside those articles strike a similar tone.

If that's all you read or heard about the scheme — and for many non-disabled people, the media is their only glimpse into it — it might be hard to come to any other conclusion than that the NDIS is bad.

What's more, Steph Travers says the economic benefits of the NDIS don't get "talked about at all anymore" in the media.

Think tank Per Capita estimated in 2021 that for every dollar spent on the scheme, $2.25 is returned to the economy.

"We've lost sight of the benefits that it provides to the economy, to the life of individuals, to the life of our support networks, to the hundreds of thousands of jobs it's created … it's not just welfare," Travers says.

The NDIS has never been more important to people with disability and PWDA says the community will fight tooth and nail to protect it.

There's still strong public support for the scheme, but its wider reputation has never been lower.

The sustainability of anything of this size funded by taxpayers relies on the goodwill of those taxpayers.

At the moment, the trajectory of that goodwill is only tracking in one direction.