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The national disability insurance scheme was a Labor vision brought to life with the Coalition’s blessing, an act of political bi-partisanship that would change the lives of millions of Australians and their families.

But David Bowen, the first chief executive of the agency in charge of the NDIS, doubts it might ever have happened had either side known what it would become 15 years later.

“Had any government, of any political persuasion, known it was going to be this size, by this time, it would have never been funded in the first place,” Bowen said.

The spiralling costs of the $50bn NDIS have this week prompted the Albanese government to launch the most significant intervention in the scheme’s history to “save” the program from collapse.

It will usher in new eligibility rules and subject all participants to independent functional assessments, cutting an expected 160,000 people from the scheme by 2030.

The changes are projected to save the federal budget $35bn over four years.

The health minister, Mark Butler, is blaming the cost blowouts and allegedly fraying public support for the NDIS on a combination of design flaws and implementation failures, including a lack of regulation of a “free-for-all” market that made it vulnerable to unscrupulous operators.

Other experts and disability advocates point to other decisions, overseen by both major parties, that helped accelerate growth beyond anyone’s expectations.

A half built pyramid

“The current disability support system is underfunded, unfair, fragmented, and inefficient, and gives people with a disability little choice and no certainty of access to appropriate supports.”

That was how the Productivity Commission described the old patchwork of state-based disability services in a landmark 2011 report that recommended a new model: the NDIS.

The national scheme would fund tailored supports for 410,000 people with permanent and significant disabilities, costing about $13.5bn a year when it was up and running.

With the NDIS helping the most seriously disabled, a second, more basic system of support – known as tier 2 – would be available for the roughly four million other disabled Australians who wouldn’t meet the criteria for personalised packages.

On the question of cost, the commission said it would be “significantly” outweighed by the benefits.

“People would know that, if they or a member of their family acquired a significant disability, there would be a properly financed, comprehensive, cohesive system to support them,” the report said.

A decade and a half later, the number of participants has ballooned to 760,000 with projections it could reach 900,000 by 2030 without drastic changes.

The scheme was on track to cost $70bn by the end of the decade if left alone, Butler told the National Press Club on Wednesday.

The unexpected growth in the size and cost of the NDIS cannot be explained by a single factor. Rather, it is the result of a combination of decisions that collectively allowed the scheme to drift further from its original intent.

The pyramid of disability supports envisaged in the commission’s 2011 report was never constructed. Instead, the establishment of the Commonwealth-run NDIS prompted states and territories to pull funding from their disability programs.

“What essentially happened was that the scheme became, as people like to say, the only lifeboat in the ocean,” said Emma Bennison, the chief executive of Disability Advocacy Network Australia.

As the NDIS grew into a multi-billion dollar industry, gaps were left in the oversight of service providers.

In a startling admission on Wednesday, Butler said about 600,000 – or 90% – of invoices were submitted each day by plan managers or service providers without supporting evidence.

The lack of regulation made the scheme ripe for exploitation, including by organised crime groups.

The quality of some supports, and a general lack of guidance on how they should be provided, have also been exposed.

Butler said the rapid rise in costs for social participation activities across the scheme would be scaled back and supplemented with a $200m fund for disability community groups and mainstream sports clubs to offer new programs.

“We get report after report … from participants who’ve been taken out, for example, to a food court by a support worker … and the support worker then spends their time scrolling on their phone,” he said.

“That’s not community participation.”

The government will move to create a digital payments scheme and mandate registration for more categories of providers, including those providing personal care and daily living support.

Mandatory registration has long been resisted by some in the disability community, who believe the right to choose their own provider – registered or unregistered – is fundamental to the “choice and control” principle upon which the scheme is built.

Just 6% of the roughly 277,000 providers are registered, according to the latest NDIS quarterly report.

Bowen said mandatory registration, with some exceptions, was successfully used during the scheme’s pilot years and should have remained in place.

“In Medicare, you can choose your own doctor, but you can’t say, ‘I’d like the money we give to the doctor and I’ll go and spend it on an alternative health service,’ you can’t do that. And the NDIS should operate the same,” he said.

The change that broadened the scheme ‘incalculably’

Butler this week said to Guardian Australia that the eligibility process had not worked “as intended”, allowing more people to use the scheme than originally envisioned.

The minister blamed a system that allowed entry based on an individual’s diagnosis rather than the extent of their functional impairment, a feature that will be reversed under the changes announced this week.

The major source of growth in NDIS numbers has been people with autism, who now account for 324,200, or 43%, of all participants.

Bowen said during the trial years of the scheme, a diagnosis of autism alone was not the basis of eligibility. He said that changed some time after his retirement as NDIA chief in 2017, a decision he said “broadened it [the scheme] incalculably”.

In August last year, Butler announced the federal government would jointly fund with states and territories a $4bn program – dubbed Thriving Kids – to divert children under nine with mild developmental delays and autism from the scheme.

‘People are really anxious’

Under laws to be introduced to federal parliament next month, every participant will be subject to “evidence-based” independent assessments of their impairment to determine their eligibility.

Scott Morrison’s Coalition government proposed its own form of independent assessments in 2021 as it attempted to rein in the scheme’s costs, which were that year projected to exceed $26bn.

The model, which would have required participants to undergo a mandatory three-hour interview with a government-contracted health professional, was abandoned after a backlash from disability advocates, Labor and states and territories.

After blocking the Coalition’s changes, questioning cost blowouts and campaigning to “defend the NDIS” during its 2022 campaign, Labor changed its tune after returning to power.

Bill Shorten was installed as NDIS minister, putting him in charge of a scheme he helped design as a junior frontbencher in the Gillard government.

He tapped Bruce Bonyhady – another scheme architect – to lead a sweeping review that recommended finally establishing a new system of disability supports outside the NDIS, as the commission had envisaged.

By then, Anthony Albanese had secured agreement at national cabinet for an 8% annual growth target for NDIS costs – the first time such a target had been set.

“We know that the trajectory of NDIS expenditure is just not sustainable into the future,” the prime minister said after the April 2023 meeting at which the target was set, referencing projections that the scheme could cost $97bn in 10 years’ time without an intervention.

Almost exactly three years on, Butler this week spoke in even blunter terms about the need for drastic change to save “the NDIS itself”. After another $13bn cost blowout, the growth target has now been revised to 2% annually until 2030.

Bennison said the disability community was racked with anxiety as it awaited detail on what comes next for a scheme that, for many, has changed their lives.

“I think people are also feeling like they’re being heralded as a burden on society. It feels really not very nice to be a disabled person in Australia at the moment.”