National Disability Insurance Scheme Amendment (Securing the NDIS for Future
Generations) Bill 2026
Dear Sir
A very brief history of the NDIS.
Let us start with some hard home truths. In 2013, a desperate Labor Government went looking for a social cause that could see it being re-elected. An equally desperate Coalition Opposition sought election, so ultimately agreed to the Labor Government’s NDIS legislation. While I am a participant in the Scheme, one has always had a healthy skepticism about the whole thing, as an act of political expediency by Parliament. This was expediency by both sides; the Government pushed the NDIS launch date beyond the Budget Forward Estimates (to avoid cost estimates appearing on the record) and the Opposition wanted to avoid being characterized as heartless naysayers before an election. The result was called bipartisanship.
The Government also had its chief economic advisory body, the Productivity Commission, prepare an initial work-up of what a potential NDIS would look like. The report, Disability Support, spoke of a three-tiered support system, costing about $22 billion1, where all levels of government, private, community and informal networks would support people with disability. The NDIS and its partner funded services would facilitate these links. The next ten years were going to be ones of innovation and growth, where far more people with disabilities were supposed to be gainfully employed and actively engaged with their community.
Look up the Australian Bureau of Statistics (ABS) or National Disability Insurance Agency (NDIA) Annual Reports, and you will realize how little has changed. Instead, we now have a $50 billion white elephant with little to show for it. This is my potted summary, taken from memory and a decade of attending or writing to reviews, inquiries, and workshops. Consultants are richer, those with disabilities and the wider taxpaying public are worse oƯ. If you need a published source who reviewed this time, Rick Morton’s recent piece for Crickey is compelling. He confirms much of what I recall, as well as revealing a few additional nightmare issues I wasn’t aware of. This included the NDIA’s ill-preparedness for ageing and disability and Bruce Bonyhady’s preference that this not be publicly highlighted by the media.2
1 This figure actually came from Liberal MP Paul Flecter, as discussed in Zoe Mithen, Opinion: I’m an NDIS participant. Here’s what I’ve uncovered about this chaotic system, https://a4.org.au/node/2714#:~:text=Fast%20forward%20to%202013%3A%20the%20Parliamentary%20
Bills%20Digest,Fletcher%20cited%20the%20AGA%E2%80%99s%20%2422%20billion%20%E2%80%93
%20correctly. Attributed to https://www.afr.com/policy/health-and-education/i-m-an-ndis-participant here-s-what-i-ve-uncovered-about-this-chaotic-system-20250318-p5lkd5 as at 30/05/2026. The Productivity Commission had billions of dollars dropping like confetti throughout the Disability Care Report, indeed, no less than 40 references to ‘billion’. 2 See Rick Morton, Gillard’s NDIS vision was a promise she couldn’t keep: Disabled people will be the ones who are punished when poor planning meets political mongrel. Crikey, Apr 28, 2026, https://www.crikey.com.au/2026/04/28/julia-gillard-ndis-vision-reforms-disability-support/ as at 16/05/2026. Morton writes:
I remember a private briefing with then NDIS chair Bruce Bonyhady circa 2014, when I had clocked the surging costs of the 65+ cohort “ageing” in place on the NDIS. It was buried in some fine print at the back of a report and, to be frank, I didn’t know if I was reading correctly that the government simply had not modelled this fact.
The reality.
No politician sitting in the Commonwealth or State and Territory parliaments over the last decade can or should escape their measure of complicity in the NDIS mess. And it is a mess. The new legislation claims to change things, but does it really? Many of us will still have to deal with individualized plans, written and approved at the almost unfettered discretion of the NDIA Chief Executive OƯicer (CEO) or their planning delegate. Old enough to remember the prior State-based system, there seemed to be much more in the way of predictable services and much less paperwork. Now the onus is on the family, community or individual participant to provide documentation and often remind paid NDIA and charitable partners to do their job. If the next advocate, NDIS planner or social worker I meet tells me, yet again, that this is an example of ‘choice and control’ they will find their nose meets my fist with force and speed.
After ten years, I am tired of ‘picking up the loose ends’ in delayed NDIS applications or reviews. Yes, that action might be in my interest, but it should not be my or my mother’s unremunerated job. I recall that the Productivity Commission’s NDIS Costs Inquiry found that 80 per cent of people, including me, were not moving to self-management of their plans. People found the process too complex, risky, or just did not want to. Yet the NDIA keeps pushing people in the same direction, as access to services varied widely across cultural, socioeconomic and geographic locations. This was confirmed by scholarly research. Which showed that while self management may have grown year by year, the increase was marginal at best.3
‘It’s Time!’
Gough Whitlam’s slogan is timely here. He had the first plan for an NDIS but fortunately the Dismissal intervened. A National Compensation Scheme (NCS) was proposed amid a range of other recommendations from the Woodhouse Commission (Woodhouse). Established by the Whitlam Government, Woodhouse argued that:
The Inquiry’s report recommended a system of no-fault compensation for all injuries and — extending beyond the present coverage of workers’ compensation and motor accidents to cover anyone with an injury, whether acquired or from birth, and those with incapacity due to illness.4
While a NCS might sound like a good idea, it came with an Australian Assistance Plan (AAP).
The AAP was a pilot program that shifted control and responsibility for community needs and welfare services to local communities that would work alongside other government and non-government programs and services to support and provide services to
It seemed too unreal to actually be true.
When I asked Bonyhady about this, he went quiet and then asked me not to write about it. “We’re not ready to deal with that yet,” the man known as the architect of the scheme said to me.
3 See Fisher, K. R., Purcal, C., Blaxland, M., Robinson, S., Quan Farrant, F., Kayess, R., & Edwards, Y. (2023). Factors that help people with disability to self-manage their support. Disability & Society, 39(7), 1821–1839. https://doi.org/10.1080/09687599.2022.2164707 as at 30/05/2026 4 Craig Wallace, “Only Human — Disability in Australian Politics (Part 2: Human Rights and Human Laws),”
The Museum of Australian Democracy at Old Parliament House, 3 December 2016,
https://www.moadoph.gov.au/blog/only-human-part-2/#. Cited in Louise St Guillaume, Disability Policy
and the Whitlam Government, Australian Journal of Politics and History: Volume 70, Number 2, 2024, pp. 188–210. (citing p. 191) https://onlinelibrary.wiley.com/doi/pdf/10.1111/ajph.12993 as at 30/05/2026
communities. The Plan established Regional Councils for Social Development (RCSD) that were managed by the Social Welfare Commission. The role of RCSD was to plan and coordinate regional development and social welfare services. Local community members, volunteers and volunteer organisations could apply to RCSD for funding to establish and support programs, projects, services, and individual needs. Services and advocacy for people with disability were facilitated through the Plan. (citations omitted)5
This sounds like a version of the mess we have today. An opaque bureaucratic and Non Government Organization (NGO) cul-de-sac leading to multiple dead ends and this is before Thriving Kids or any other oƯering, supposedly diverting people from the NDIS.
Government – do your job!
It is time for governments to start governing again. This means that this legislation should be an opportunity for governments to take back control of organizational governance from NGO partners. That is, run services directly, rather than outsourcing citizens like me to the nearest NGO and hope we will go away quietly. I won’t. The Minister’s recent speech before the National Press Club showed the negligence, neglect and naiveté of politicians and bureaucrats alike. Minister Butler should be the first to go, given he could admit with a straight face that ‘[the] government has identified eight recurring design failures in [programs] making them susceptible to fraud – the NDIS has all eight.’6
Why should anyone live under such a program? It provides not safety, security or certainty. Indeed, if the Agency, NGOs and individual plans remain, won’t government be back here tinkering with legislation a few year grom now? I would put money on it! So,
Recommendation 1: Let’s get rid of plans. They just make work for families and individuals and don’t necessarily produce that much of value. Christina Ryan doesn’t think much of them7 and neither do I. They are woke-word-salads of waƯle and again, the prior State-system did not need them. Furthermore, why does anyone in a democracy need government to plan their lives? This planning is more in keeping with ideas out of Soviet Russia or China.
Recommendation 2: That the Federal Government (and all Australian Governments) acknowledge their financial negligence. Minister Butler said: ‘Currently the NDIA has no visibility of evidence for 90% of claims that are made by plan managers or by providers directly.’8 In the face of such staggering incompetence, the response to the Agency and Minister should be (invoking President Trump) ‘You’re fired!’ At least I now know why I have never been able to receive a double-entry bookkeeping reconciliation of my NDIS Budget. Why government has never pursued such measures is unclear, particularly if financial stability and sustainability is the aim.
5 Louise St Guillaume, Disability Policy and the Whitlam Government, Australian Journal of Politics and
History: Volume 70, Number 2, 2024, pp. 188–210. (citing p. 193) https://onlinelibrary.wiley.com/doi/pdf/10.1111/ajph.12993 as at 30/05/2026 6 See Mark Butler, Minister Butler speech at the National Press Club – 22 April 2026 Read Minister Butler’s speech to the National Press Club on securing the NDIS for future generations.
Minister Butler speech at the National Press Club – 22 April 2026 | Health, Disability and Ageing Ministers
| Australian Government Department of Health, Disability and Ageing as at 31/5/20267 See Christina Ryan, Disabled people asked to pay the price of poor management Health Services Daily,
29 May 2026, Disabled people asked to pay the price of poor management | Health Services Daily as at31/05/2026 8 See footnote 6, above
Recommendation 3: That the Government does not leave participants and families to ‘sort out the mess’ coming from the new Bill. For example, how will Joesphine9 manage her diabetes, if NDIS carers do not? The scenario says Joesphine has an intellectual disability and that a medical practitioner will deal with the diabetes. That’s if she has one, and anyone is assigned to make appointments (as Josephine cannot) with a time-stretched GP. Will the result be a diabetic coma in a hospital Emergency Bay?
This is what annoys me about the NDIS. It just assumes that someone else (like a magic fairy) will do what it arbitrarily chooses not to do. While welcoming greater Ministerial involvement, it is not aimed where I wanted it.
Recommendation 4: That the NDIA stop using NGOs. After a range of Royal Commissions from
the McClelland Inquiry into Child Protection, Aged Care and Disability Royal Commissions, why
are so many bodies who were found wanting, still funded by Government? Why are they involved with the NDIS and indeed, why do many retain charitable status? Beyond this, why does anyone still assume that many charities are public goods, or doing ‘good’? All the Royal Commissions cited suggest otherwise.
Further, even if some charities are doing good, is this enough to justify perpetuating disability and NGO service delivery for all time. I have not thought so, particularly given my experience of the NDIS – told in submissions to the Disability Royal Commission, the Productivity Commission, the NDIS Commission and countless other reviews or inquiries. Knowing you depend on the whim of third-party rent-seekers who now make profits on your ‘care’ while paying no tax (due to charitable gift status) is disconcerting. Have I become an article of trade and commerce?
Recommendation 5: That the NDIA directly deliver a ‘basket’ of standard disability goods and services, using the economic concept of a basket of goods. I would feel safer if staƯ were background-checked and trained by the State, as used to happen under the NSW Ageing and Disability Department. There is no such assurance now and this must be addressed. At present, you just must take it on trust that NGO X has trained or background-checked their staƯ, unless you have known the staƯ in the prior State-run system, and there are only a few of these safe, reliable people left. The Bill fails here.
Recommendation 6: That the NDIA eliminates Rule 7.5 of the Participant Support Rules. The NDIS has always had a lack of vision when it fails to fund functional improvement. We should aim for a nation where disability is not experienced in any form. I’m 52, wouldn’t wish cerebral palsy (or any disability) on anyone and hope to be the last of my kind. Christopher Reeve, Olivia Newton-John, Neale Daniher and others showed the way ahead. They talked about care but also most definitely about cure.
The NDIS should do the same thing because the only ‘disability right’ worth having is a cure. We would not have had such options in the 1970s of Whitlam, but in 2026 cellular, genetic and other regenerative technologies are much closer to reality. No-one should have to accept lifelong disability as a fait accompli and neither should the NDIA. Why should the NDIA leave people in their current incapacity if there is technology to ameliorate it? Won’t this save the public money overall, if there are fewer persons who are disabled? Finally, the NDIA should be
9 Memorandum, p. 27-28
held to be negligent if people lose an opportunity to be restored to health, thus remaining on the NDIS in a worse condition for longer. This bill fails this test.
Yours truly,
Adam Johnston
1/06/2026