National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1355
To the Senate Standing Committee on NDIS and other interested Members:
I write to urge you to strongly consider the strengths and weaknesses of the proposed NDIS Amendment Bill and push for appropriate changes to the Bill to ensure that the rights and dignity of people who rely on the NDIS are respected.
While I recognise that the NDIS has become unsustainable in its current trajectory and changes are needed, the NDIS is a life-changing and often life- saving system of support for disabled people in Australia. My husband has severe Multiple Sclerosis and lives in a Supported Independent Living care facility. I have a serious disabling medical condition which makes me effectively housebound without external support. The NDIS is central to both of us being able to survive. Like many current NDIS participants, we are extremely concerned about what the practical impact of the proposed changes will mean for our quality of life and the provision of our basic needs.
I am very concerned about the proposed swingeing and indiscriminate reductions to Community and Social Support. Neither of us can drive. We are not using those hours of support to go and do fun things (although having a basic social life and avoiding complete social isolation are valuable in themselves). We live in a regional area - those support hours are used to have support workers drive us to necessary medical and allied health services appointments. These things are not “nice to have” extras in the life of a seriously disabled person, they are critical necessities. Service providers are not five minutes drive away or accessible by taxi - we require funded support workers to transport us to these appointments (my GP is a 35 minute drive away) and to assist us while we attend the appointments. Indiscriminate cuts to social and community participation funding won’t just mean that disabled people can’t “go out for a coffee”. They will mean that medical and allied health treatments which are fundamental to keeping disabled people alive will be unable to be attended. I can not overstate the importance of this. Please do not be complicit in euthanasia by budgetary cuts. And, yes, it really is that serious.
Please look to the unconscionable actions of many service providers to find examples of unjustifiable waste and graft. They will not be hard to find. There are many NDIS service providers who openly charge a higher rate to NDIS participants even though there is no difference in service delivery - I am thinking here especially of allied health providers. The organisations that coordinate care rort the system mercilessly. A provider who oversees my care support workers takes 50% of the funding. The provider does very little once the workers are registered into their system - the same people do the same work for me every week; there is no input from the service provider. The care workers input their hours directly into an app which automates payroll. The service provider might be contributing at most 10 hours a year of “back-room” administrative input, and yet they reap in $35 an hour for every hour of care I receive. That is unjustifiable. I
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1355
also find it outrageous that the organisation which runs my husband’s care home receives roughly $500,000 a year to provide for his accommodation and care, and yet even though they only feed him once a day, they demand 80% of his pension each week. I find it hard to believe that the $20,000 a year they squeeze out of him makes any meaningful difference to them in the context of the half a million dollars they are already receiving from the tax payer for his care. But it has a huge, crushing impact on our finances. Being seriously ill and disabled is an expensive business. The NDIS does not cover medical and specialist costs. pharmaceutical items, or the basic costs of clothing, food etc. My husband is left with $100 a week to cover all his living and medical expenses, along with what should be 2 meals each day (he can’t afford the food for that - in his words “I am living on an apple and a tin of tuna a day”). When the provider recently increased their “co-contribution” rates, they clearly knew that this would put their clients under unbearable economic strain, as the last line of their email was a link to the Debt Helpline. This is absolutely appalling behaviour. The provider rorts both the government and the client and then has the gall to advertise themselves as a benevolent organisation “supporting people with neurological disorders” in order to solicit money from the public.
These examples are just the obvious - and currently legal - examples off the top of my head. There are “service providers” out there that are merely a front for harvesting government money. They provide no service whatsoever. It is a sad reality that many disabled people are easily exploited and don’t understand the byzantine NDIS system. I am an educated person whose first language is English, and I have reasonable levels of literacy and numeracy and no cognitive dysfunctions. I can not negotiate the NDIS system. People who do not have my level of privilege in the above terms have no chance whatsoever. And it is a sad reality that many disabled people do not have a single effective advocate to help them with these things, or are reliant on friends or family who also lack the capacity to navigate the complexities of the NDIS to get the services the client is entitled to. The complexity in the system is a big part of why all the “middlemen” companies get to take such a big bite of the funding cherry.
I urge you to consider putting in place more effective compliance and fraud detection systems in the NDIS - they will more than pay for themselves.
I acknowledge that money needs to be saved for the NDIS to continue to make the huge difference it does to many seriously disabled people, but rather than taking of 5 hours a week from each individual participant’s funding allocation, legislative changes should focus on the systemic problems of service providers over-charging or charging for non-existent services.
I also believe the NDIS should be focused on those people who are seriously disabled and unable to live without government support. A system which is basically a “post-code” lottery whereby the rich are able to contort the system to
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1355
get unnecessary government support for minor issues for themselves or their children is an insult to our collective moral integrity and to the tax-payer.
Thank you for taking the time to read my submission. I urge you to speak to seriously disabled people in your electorates whose lives will be directly affected by the changes being proposed, to understand the practical impact of those changes on their day-to-day existence, and to advocate on their behalf.
Yours truly,