Coalition rhetoric on NDIS ‘blowout’ cools as election looms but critics say crucial support still being cut

Only 12 months ago government frontbenchers from the prime minister down were warning the National Disability Insurance Scheme was becoming too costly. They promised to "fully fund" it but insisted sustainability reforms were needed.

But despite this concern about the cost of a scheme that provides life-changing support to more than 500,000 people, the NDIS has not become the political football it was during and after last year's budget period.

Of course, this time, shortly after Tuesday's budget there is a federal election.

But those working in the sector will tell you that although government cost "blowout" warnings are no longer in the news, the issue has not faded away.

In fact, critics point to an avalanche of anecdotal reports of cuts to individual NDIS packages to argue the agency running the scheme has simply taken its campaign to rein in its costs underground.

Last year's budget forecast the NDIS would hit $33.3bn in total costs by 2024-25, with more than half of that spending provided by the commonwealth. The share of funding covered by the commonwealth was also increasing.

A separate NDIS Financial Sustainability Report, initially secret but later released in full, predicted it would cost $60bn a year by 2030. Those estimates have been treated with scepticism by the states and some experts who note the forecasts have varied significantly in recent years.

Tuesday's budget will provide updated forecasts on overall NDIS spending, but it's unlikely to shed light on the veracity of "stealth" or "secret" cuts, as argued by Labor's Bill Shorten and the sector.

As disability advocate Elly Desmarchelier points out, because the number of people on the scheme continues to increase, so too will overall spending.

The latest NDIS quarterly report does show the average plan budget fell by 4% in 2021 to about $68,000. Before that, the average plan had increased each year since 2018.

While some report that support they'd previously received is being ripped away, others are still getting increases to their plans.

The top line figures may mask what advocates say they are seeing on the ground, where some NDIS participants talk of cuts in the tens of thousands of dollars. The number of legal appeals of NDIS decisions, meanwhile, has increased by 400%.

Desmarchelier, who lives with cerebral palsy, will be among the speakers in Canberra on Tuesday when the advocacy group Every Australian Counts launches a new campaign, Defend Our NDIS.

It is set to take aim at the "unexplained plan cuts that are leaving people without critical support". The national disability insurance agency (NDIA) denies there is a directive to cut plans.

The campaign is backed by the Australian Federation of Disability Organisations, and National Disability Services, which represents NDIS providers.

It will argue that talking only about the cost of the NDIS misses the bigger picture, including the economic benefits.

"Without the NDIS I would not be able to work," says Desmarchelier. "That would put pressure on my partner not to work full-time so we'd rely on Centrelink. That in one case study proves the point of the power of the NDIS.

"That's not everyone's case. But even if employment is not in someone's goals, [there is] just the power of having people [with disability] out in the community."

National Disability Services has already released research from the progressive thinktank Per Capita stating that the NDIS delivers $2.25 to the Australian economy for every dollar spent.

On Tuesday, it will release further modelling estimating the economic benefit of the NDIS in each federal electorate. Laurie Leigh, NDS chief executive, says the modelling "reinforces the NDIS must be seen as more than just a cost line in the budget - it is an investment in people and communities".

Desmarchelier adds: "What we need to remember is the issues in the NDIS aren't just about money. It is about attitude and respect."

Desmarchelier was forced to wait for the NDIA to approve a new plan so she could afford the cost of catheter bags, which she needed after she was forced to have bladder surgery last year.

In the end, without enough money to buy them herself and still waiting on the NDIA, she had no choice but to head to a public hospital to ask them for enough supplies to tide her over for a week.

Then, when the plan finally came through, it funded only half the amount that Desmarchelier's urology nurse had said was needed in a report provided to the NDIS.

When she complained, Desmarchelier says she was told that she could wash the catheter bags and that the agency had "used the standard amount for someone of your age and your condition".

She was confused why the agency had not heeded the advice in the reports she'd provided. Desmarchelier expects to run out of catheter bags in June.

"I have been in ICU as a result of a bladder infection," Desmarchelier says.

"I'm not out there trying to get diamond-encrusted catheter bags. They had been so penny pinching they had refused to see that I could need something different."

Last year, the commonwealth scrapped the controversial cost-saving "independent assessments" proposal aimed at ensuring more consistent decision-making within the scheme.

It also ditched possible changes to the NDIS Act which may have set boundaries on what the NDIS would - and more pertinently would not - fund.

It's now undergoing a "co-design" reform process with the disability community. Those outcomes are unlikely to emerge until after the federal election.

Peak body People With Disability Australia also has a list of budget demands. It included a "fully funded NDIS", improved emergency planning and support for people with disability and money to improve Covid safety for people with disability.

The group's fourth demand is more money for disability advocacy services. This goes to the heart of a growing problem caused by the cuts to funding packages.

Amid the apparent increase in cuts to packages, disability advocacy services are overwhelmed.

People with disability are struggling to get support to challenge the agency's decisions to cut their funding. Some services have closed their books to new clients.

Many of those individuals do not have the same resources or capacity as Desmarchelier.

"If this can happen to me, when I have all the resources in the world, I can't even imagine the type of cuts and decisions that are being made to people with disability who are segregated, who are isolated, who don't have a voice," she says.