Submission 2230
29 May 2026
To: Committee Secretary, Community Affairs Legislation Committee
Re: Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Dear Committee,
I am writing to express my deep concern about the proposed amendments to the National Disability Insurance Scheme (NDIS).
My youngest daughter has been a NDIS participant since the trial phase, joining the second intake in October 2013 due to her age and her diagnosis of cerebral palsy.
In introducing the bill, Mr Butler stated that with this bill he seeks to restore the NDIS to its original intent of providing lifetime supports for Australians with permanent and significant disability, while also securing the scheme for future generations. Based on my lived experience, those aims are not reflected in the measures proposed. The original intent of the NDIS was to provide people with disability with genuine choice and control over the supports they need across their lifetime. This bill instead shifts key aspects of that choice and control back into government hands. Without meaningful involvement from those who helped shape the original NDIS, critical issues risk being overlooked. At the same time, the bill does not demonstrate how the proposed changes will achieve the sustainability it promises.
Many of the proposed changes risk causing serious harm to participants, including adverse health outcomes, in ways that echo the dangers seen in Robodebt. We have already seen the consequences of decision-making systems that lack transparency, accountability, and now to remove effective rights of review as well. There can no longer be any credible claim that the risks of automated or unchecked decision-making are unknown. The fact that currently most NDIS appeals are decided in favour of participants demonstrates that participants often understand their own circumstances best and that errors do occur. Removing review rights in this context would create an unacceptable risk of harm.
Reviewable decisions and reassessments
Across coming up to 13 years with the NDIS, I have seen many errors in my daughter’s plans and in the plans of other participants. These have included communication misunderstandings, data entry mistakes, omissions, and errors caused by a lack of knowledge or poor transfer of information. When plans are issued with mistakes, reassessment and appeal rights are essential. Removing those rights while such errors continue—which is inevitable in any complex system—would be devastating for participants. For example, one recent plan listed capital funding as $1,000 instead of the correct amount of $10,000, despite this having been agreed to with the planner and supported by a quote. That funding was intended to cover two pairs of AFOs (ankle and foot orthotics) over the life of the plan. Until this obvious data entry error was corrected, no AFOs could be purchased. Without transparency and access to review, my daughter would have gone without AFOs for the entire plan period, risking permanent deterioration in her mobility and increasing her support needs, and costs, over the remainder of her life (as well as her pain and suffering). Plans without mistakes are the preferred option however until then transparency and right to review is critical.
Unspent funds from a previous plan should remain available where the approved support has not yet been delivered.
Submission 2230
Capital funds: Sometimes an item is approved in a plan, but the funds are not used before the plan ends. This can occur for reasons beyond the participant’s control, or because other life events delay the purchase. We are currently going through the process for vehicle modifications. Car modifiers are in extremely high demand, and the wait time is 12 to 18 months from paying a deposit to the vehicle being sent for modification. The modification itself then takes around three months. In total, the process for us will take close to two years, from NDIS approval to final payment. Our process has been quicker than some of my friends.
Capacity building: It also took two years to determine which vehicle and modifications best suited our circumstances. The assessment process is necessarily complex, as would be expected for an expense of this size, and the funding provided in a plan for a therapist to complete the assessment and write the report is unlikely to fit within a single plan period. Specialised therapists who prepare these reports also have long waiting lists and are unlikely to have an ongoing relationship with the participant. This is just one example of the many equipment and support needs that a participant and their families may be trying to progress at the same time, especially of children as they grow and develop.
Core supports: Allowing funds to roll over gives participants and their nominees the flexibility to use support when it is most needed. If a foreseeable situation will require more support than usual, budgets can be managed to make that possible without overspending. These situations may include participant hospitalisation, holidays or special events, informal supports taking leave, or a health crisis affecting informal supports. For example, as a single parent supporting a teenager who cannot transfer without assistance, I have needed additional help when I have required surgery or time away. After surgery, I was unable to lift for six weeks, which made extra support essential. No additional support has been built into the plan for these circumstances, though that broader issue is beyond the scope of this submission.
While I support efforts to reduce fraud and strengthen the long-term sustainability of the NDIS, these reforms must not disadvantage participants with complex, and high support needs. Fraud and sustainability are persuasive concepts, but invoking them does not demonstrate that the proposed measures will achieve either goal. Genuine sustainability will come from listening to the people who rely on the scheme every day, because they are often best placed to identify both waste and practical solutions. On many occasions, I have been told that I cannot pursue a lower-cost, more practical solution to a disability-related need and must instead accept the option preferred by the NDIS, even when it is more expensive and less effective or not fit for purpose.
The proposal to require providers to be registered is also unlikely to deliver the benefits claimed. Registration increases costs, and those higher costs are ultimately borne by participants and the scheme itself, making the NDIS less sustainable rather than more so. It also does not guarantee safety or prevent fraud. There have already been many examples of registered providers neglecting or defrauding participants, which demonstrates that registration alone is not an effective safeguard. If the goal is to protect participants and preserve the scheme, reform must focus on what improves outcomes, rather than on measures that add cost without addressing the underlying problem. Instead of increasing the spend on provider registration (busy work), increase the carer payment to a living wage (and increase the means test to be inline with the carer allowance) this would give more informal supports the option to be available for their loved one and feed themselves. Reducing the burden on informal supports will allow them to have more capacity to notice when things are off and act on that.
Submission 2230
Importantly, decision-making power of this magnitude should not be concentrated in a single individual even with clear safeguards, transparency, and meaningful avenues for review. In a democratic system, reforms of this significance must be subject to independent oversight so that participants are protected from error, unfairness, and misuse of authority, including by future governments. Without these protections, the bill risks undermining the trust, accountability, and participant-centred principles on which the NDIS was originally built.
Thank you for your consideration.