A political scuffle over the Prime Minister's clumsy use of the word "blessed" has thrust the National Disability Insurance Scheme (NDIS) back into the spotlight and triggered important questions about its sustainability.
Yet these are questions neither side of politics is prepared to answer.
Has the greatest social reform since Medicare turned into a "Frankenstein's creation", as a prominent Labor candidate has suggested?
Providing uncapped support to more than half a million Australians, the cost of the NDIS has blown out.
It's about to overtake Medicare — and, yet, the extra billions appear to have done little to improve the experience of participants forced to navigate an overly complex and bureaucratic scheme.
Where did it all start?
The NDIS was set up by former prime minister Julia Gillard in 2013, to support people with a disability, their families and carers. It replaced a tangle of "underfunded, unfair, fragmented and inefficient" services that gave people little choice and certainty over their care.
According to the Productivity Commission (PC), the NDIS would help cover the "large costs of lifetime care and support" for people with "a significant and ongoing disability" — which, in 2011, was estimated to be around 410,000 Australians.
Major disability, as the PC noted, could happen to anyone at any time and the scheme would provide a safety net to catch them.
Once fully rolled out, the NDIS was expected to cost taxpayers about $22 billion a year but, as it stands in 2022, it's blown out to $31 billion and is on track to hit $70 billion by 2032.
So where did it go wrong?
This is a contentious and emotionally charged area but, according to some experts, loose eligibility requirements mean far more people are qualifying for the NDIS than originally envisaged and there's not enough oversight of its budget.
Mr Charlton — who worked as an economic advisor to Kevin Rudd — labelled the NDIS budget a "shambles" and traced the problem back to the scheme's design.
When the NDIS was established, the Gillard government set up the National Disability Insurance Agency to administer and fund the scheme.
However, Dr Charlton now reckons it has far too much independence from government, which has far too little control over its spending.
Unlike most other taxpayer-funded agencies, the NDIA sets its own budget and reports to a board, not to a federal minister.
"The fatal flaw in the NDIS: It cries wolf but has no shepherd to control its spending," he wrote in The Sydney Morning Herald and The Age last year.
"Like Victor Frankenstein's unorthodox creation, the NDIA board has slipped control of its masters.
Hassan Noura — a former general manager for strategy at the NDIA and head of the sustainability action taskforce — has partly blamed "scope creep", arguing the scheme has expanded well beyond its original intent, covering people with a far greater range of disabilities.
The number of active participants on the NDIS is currently around 500,000 — or about 2 per cent of the population — and is forecast to rise to 860,000 participants by the end of the decade.
"The NDIS raised awareness and empowered more people to seek diagnosis, and the breadth and depth of needs were likely underestimated in the original road map," Mr Noura wrote in the Australian Financial Review.
"The distinction between disability-related 'functional impairment' versus the broader impacts of health and social issues is unclear and open to interpretation.
"This lack of clarity and unclear boundaries have fuelled scope creep and resulted in the NDIS increasingly funding a broader range of social needs for a much larger cohort of people."
He also points out that while other social programs have fixed-dollar benefits — you can't negotiate with Centrelink or Medicare for a higher subsidy, for example — there is no cap on support for an NDIS plan, making it difficult to accurately forecast the agency's budget.
Professor Bruce Bonyhady was one of the key architects of the NDIS and said its original vision was "not being honoured in the full".
"There are very significant cuts to plans occurring. Some seem quite indiscriminate and counter-productive," he told ABC's RN.
"The NDIS needs to be run as an insurance scheme and we need to get back to that."
Assessments are a tricky issue
Navigating the NDIS can be extremely stressful for participants who have complained, since the scheme started, that it is overly complex and burdensome.
NDIS support plans are re-assessed annually and, before each review, participants are required to obtain a written report from each of their doctors, specialists and therapists to prove to the NDIS planner that they still require the assistance they have been receiving.
This is even the case for people with lifelong disabilities whose conditions will not change.
Those familiar with the process have described it a heavy administrative burden that can feel like a full-time job.
However, in some cases, it's also led to "doctor-shopping", where families with the means will find doctors willing to exaggerate the level of need to get a more generous plan.
When the government tried to tighten-up this process with independent assessments, it faced a massive backlash from Labor and the disability sector, who were deeply skeptical about its motives.
Who pays for the NDIS?
The Commonwealth shoulders about 60 per cent of the cost the states share the rest, with the money coming out of general revenue. The Medicare Levy was increased from 1.5 per cent to 2 per cent in 2014 to help pay for the NDIS, but attempts to raise the levy even further, to cover the full cost, have failed.
In 2018, then-treasurer Scott Morrison tried to increase the levy to 2.5 per cent, raising $8 billion over four years, but he was forced to ditch the plan after failing to secure enough support in parliament.
Now, neither major party is game to increase taxes, so the challenge for whoever wins in May is figuring out how to pay for the NDIS with a budget heading towards structural deficit — that is, more money going out than coming in.
Labor's NDIS spokesman, Bill Shorten, has accused the Coalition of "hyping" claims of cost blowouts and called for greater transparency in the scheme.
If elected, Mr Shorten has promised Labor will review the NDIS and has pledged to reduce costs by cracking down on "rorts" and the use of external consultants and lawyers, but he won't say how much it expects to save.
The government has promised the NDIS will always be "fully funded" under the Coalition, pointing to economic growth to generate the revenue required.
What are the major parties saying?
As the party that fought for and established the NDIS, Labor is very protective of the scheme — promising to "restore trust" in the NDIS if it's elected — and it has accused the Coalition of mismanaging it.
However, despite claims of "unfair cuts" the Prime Minister has made, last month's budget allocated an extra $40 billion in funding to the NDIS over four years.
The NDIS is a great social reform and nobody is arguing against its need.
However, the question the government — and taxpayers — will eventually need to confront is whether the NDIS of 2022 is the scheme envisaged all those years ago and whether it's sufficiently serving the people who need it most.
Editor’s note (3/6/2022): The original version of this story said there was no Medicare-style levy to help pay for the NDIS. It has been changed to clarify that the Medicare Levy was increased in 2014 to help pay for the NDIS but further attempts to raise the levy failed.
