Feedback in response to the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Dear Senators,
First of all, I wish to say thank you for allowing more time for responses to the above Bill. Initially it was way too rushed and didn’t allow the time to scrutinise the details of this Bill properly.
I am writing to you to express to you my deep concerns regarding the above proposed Bill. I want it to be on the record that I do NOT support this proposed Bill as it now stands.
Let me introduce myself.
My name is . I live in your electorate at and have done since 2009.I was diagnosed with Multiple Sclerosis in October 2001 at the age of 30 after an MRI investigating why I was experiencing extreme balance and coordination issues with both legs, numbness on my whole right side up to my breast, and a tight feeling around my chest that felt like a thick, tight elastic band underneath my breasts (this phenomenon is called the MS Hug and is unique to MS). MS is a progressive, permanent auto-immune disease where the immune system attacks the myelin sheath around the nerve fibers in the brain, spinal cord and optic nerve. It affects every part of the body, and there is no cure or medication that fully controls the progression of the disease or the symptoms. Over the years, I have progressively gotten worse with the worsening of current symptoms and the development of new ones over time.
At present my symptoms are pins and needles on my upper body, uncomfortable feelings of itchiness on my upper back at night, severe lack of balance and coordination of the legs so that I cannot walk without assistance of a cane or walker, leg weakness so that I have to sit down within 10 minutes of walking, insomnia, urinary incontinence, a feeling of a tight elastic band around my chest underneath my breasts, brain fog, extreme fatigue that worsens all other symptoms that I experience and visual disturbances. I have regular treatment from a neurologist, a urologist, an endocrinologist and a GP. They are essential for the management of my health but they are very expensive and can be a great financial burden.
I have been on the NDIS since 2018 when it rolled out to South-East Queensland. Before that, I received some support in the form of some house cleaning from Disability Services Queensland, a Qld Government department that closed down once the NDIS rolled out. This is some of the reason why there are no services to replace the NDIS in Queensland. The Queensland Government left all responsibility for all support for us with the NDIS funding. It is important that no person is let go from the scheme until there are equivalent supports available in services provided by the Queensland Government. Since at present the State government is focussed on the Olympics in 2032, I doubt that they will go to the trouble of providing funding for services that are equivalent to the NDIS.
I have been extremely grateful for the introduction of the scheme as it helps to pay for the extra supports that I need to live a decent (if limited) life with dignity and safety. It has improved my quality of life, despite the serious difficulties that I experience day to day due to my illness. It has meant that I can continue to keep working, contribute to Australian society, live a dignified and decent life, and pay taxes.
I believe that the government in total are only looking at the costs to the NDIA but I pay taxes and they contribute to the economy. My support people also contribute to the Australian economy. By having NDIS support to help me, I am able to give back a lot more than I take in terms of money to the NDIA. I don’t believe that the cost-benefit analysis of the NDIS has been properly done in this decision, which does not give the full picture of how the NDIS contributes more to the economy than has been accounted for in the drafting of this Bill.
I self-manage my funding. That means that I hire various providers, receive invoices or receipts from them, pay them out of a bank account specifically used for my NDIS funding, and upload invoices, receipts and reports to the NDIS website. It is very clear that quotes that I have gotten are far lower cost from providers/suppliers who are not NDIS registered. They are also far more available and have better communication with me, which is very important to me, and I would prefer to hire businesses who properly consult and communicate with me. I do not always get that from some providers particularly those who are registered. Recently I have had to change an essential provider as they were not treating me with respect and often cancelling services at the last minute, without a backup plan.
Currently I have support to prepare and cook meals, mow and kill weeds in my lawn, and clean my home. I also buy continence products from Woolworths and online continence providers. All of these activities are regarded as Assistance for Daily Living. In addition, I buy assistive technologies that help me with daily living and outdoor activities. In the past I have had grab rails and ramps installed at several entrances to my home to assist me in getting in and out of my home.
Some of these are registered providers, some are not because it has been impossible to get some of the ordinary supports from registered providers. The registered providers are often way over-priced. Once they understand the price guide, they are able to set prices that are at the limit of the unit prices in the Price Guide. That means that the prices that they charge are above the normal rate for an ordinary task that the general public can pay for.
Whilst I understand the reasoning for ensuring all providers are registered to ensure people are properly trained, there are many providers who are truly price gauging us with supports and services. Many support workers only get the most basic of training, which is quite honestly very dangerous. I ask that participants who are self-managed be protected from having to hire providers who are registered. If I am competent enough to manage my own funding, then my right to pick providers regardless of whether they are registered or not should be protected. In end the NDIS is supposed to give us “choice and control” over our lives. That is part of the original purpose of the scheme.
I also seek on-going allied health treatment in the form of a physiotherapist with special training in neurological conditions and an exercise physiologist, both of whom prescribe exercises that help me maintain my physical wellbeing. Under the NDIS categories, these come under the category of Capacity-Building Activities. These are essential treatments that I must have in order to maintain my mobility as much as possible. They are not optional.
Life is very hard as I live on my own with very little informal assistance. My mother, although she is willing to support me, is unable to assist me as she is in her eighties and experiences some mobility issues herself. My brother, his wife and children, although they care, are unable to physically help me, have an inaccessible home, and do not provide emotional support. I am literally on my own in coping with the consequences of this illness.
I have serious concerns about this Bill. In particular, I am very concerned about the proposal that the Bill will take away at least 50% (up to 99.99%) of Social and Community Participation funding as soon as I have a plan review. This is essential funding that assists me to pay support workers when I need them to go to medical appointments, go grocery shopping and to work part-time, in fact anytime I wish to leave my own home and participate in an aspect of my own community. This proposal that has been made to drastically cut funding to this type of support has the potential to isolate me in my own home with no end in sight. It is deeply unfair to do that. How would you all like it if you have to wait to be able to afford to step out of your own house to do some grocery shopping, or to work in your job? It is deeply unfair and I know that because we are people who need support to do the ordinary tasks, we are the easiest target to fire at because we are some of the most vulnerable members of Australian society.
This aspect of the Bill has been painted in the media as an optional extra for people with disabilities and as a complete waste of money, but it is absolutely vital for us to participate in society in any way. This suggestion of decreasing the support so drastically is unacceptable and literally cruel. You are legislating cruelty against us. In doing this, your government are literally punishing us for having needs to participate in society and painting it as fraud.
I also understand that 10% of my Capacity-Building funding will be taken away. I am already aware that quite a few of my friends with MS (and another with Spina Bifida) have had their Capacity Building supports severely cut, which negatively affects our access to necessary allied health care as outlined above. This is unacceptable to me, and the definite consequence will be a more rapid decline in my mobility. This has the potential to cause a sharper decline in my mobility over time. If I do not have enough funding in this part of my plan, then I will not only be unable to pay for exercise or treatment plans from my allied health providers, but also have inadequate funds to pay for assessments and progress reports, which are necessary to prove my need for NDIS funding.
There seems be quite a bit of disturbing rhetoric around scams and fraud in the NDIS and routinely people with disabilities are being blamed for wasting money when there is not a shred of evidence to prove that we have been scamming or defrauding the government. In my experience, it is often the providers who overcharge us. I do think that the prices in the Price Guide are way too high and have influenced the costs of various essential supports for the general community. Since the NDIS rolled out, prices for assistive technologies have also skyrocketed. It is there that the government needs to begin to make some savings.
I also understand that all providers are proposed to be registered with the NDIS. Not all of my providers are registered with the NDIS but they do have ABNs. My experience has shown that it is very difficult, if not impossible, to get workers for the basic tasks of living in my own home who are registered with the NDIS. It is not worth their while to pay for the registration as sole traders.
Instead, I have hired people who are unregistered and charge below the capped prices for supports. Many providers will ask me whether I am an NDIS participant and if I say yes, automatically the price rises to the capped price. I have routinely experienced this, so I usually say no to that question in order to be charged a fair price that people usually pay for the same service, regardless of whether they have a disability or not. This is where a lot of the waste is because the capped prices for supports are above what the general public will often have to pay for the same services.
I understand that as of 1 July 2028, individually-funded support coordination will be replaced by a new Government-commissioned “support coordination and connection” service. My communications with the NDIA have not been positive over the years, and so I have little trust in this
measure. It is clear to me that people employed in the NDIA who make important decisions about whether and how much support I get have very little understanding of this complex, disabling condition. Consequently, they are likely to make poor decisions that deprive us of essential supports.
It is very important to me as a participant with no informal supports, that I retain the one Support Coordinator who understands what I need, who I can personally communicate with and can assist me when I need some advice on what my plan contains, what I am and am not allowed to do, and can act as an advocate for me due to informal supports being unavailable. This is especially important to allow me to put my energies into the more pleasant aspects of life, something that I have had little of for the last five years since my father passed away. He was my only informal support.
I am totally opposed to the proposal that the Health Minister (and any future Health Minister) can cut funding for whole specified groups of supports by a percentage lower than 100%. This is very frightening to me and gives the Minister unfettered powers to cut “reasonable and necessary” supports. Subsection 34A(5) of this Bill will allow that determination to operate even when the result is that funding for a reasonable and necessary support is less than the total cost of that support. This creates planned unmet need. This becomes a very stark reality for me regarding when applying for funding for a motorised wheelchair, which is becoming more and more likely very soon due to the decline in my mobility and upper limb dexterity. Over the last few years my mobility has decreased and I am quite sure that I will need one very soon. I cannot use a manual wheelchair (which is cheaper) because I do not have the physical strength to wheel it around myself. All this has been proven by assessment and reports that have been done by my allied health providers.
I am also very worried about the proposal that decisions around supports are likely to be made by algorithms with no individual appeal rights. I believe that this is very dangerous as we know that AI is imperfect and can misinterpret meaning. The most glaring example of this was Robodebt, and the majority of people know the preventable deaths that ensued with that debacle. I don’t believe in letting any AI have the ability to make decisions about any aspect of a human life, particularly people with disabilities who are already coping with significant disadvantages in our lives.
I am also concerned by the suggestion that the only report that will be required to prove the need for NDIS funding is a Functional Capacity Assessment. It is a blunt instrument but can’t really account for the whole picture of a human’s needs. It is only part of the picture. I find that my other allied health reports provide a more rounded understanding of need. An OT who I don’t really see from week to week can’t really understand all of my needs and therefore is unlikely to have the whole picture of what services and tools I need to live a reasonable life. Even an opinion from my GP would be a lot better than just this limited measuring tool.
I have just paid an extraordinary amount of money through my plan just for a Functional Capacity Assessment so I know what it contains. It was nearly $2000 just for that assessment and report. That was in addition to reports that were done from my exercise physiologist and my neurological physiotherapist. If you are going to require that someone have an FCA before applying for the NDIS, then that will be a major roadblock to getting even the basics of care as it’s a lot of money to pay for work that is not covered by Medicare.
People with disability are often poor and experiencing major financial disadvantage due to the having to look after our health with specialised support and inflated costs of supports. Many are unable to get employment because employers discriminate against us in the workplace and even in
the interview. I experienced that first hand when I was first diagnosed and was let go from my job at the time, even though I was studying in the field I was working in.
Please, have a heart and withdraw, or at least modify the proposed Bill. It is deeply flawed and goes utterly against the main purposes of the NDIS where we are supposed to be able to have “choice and control” over our own lives which is what the original purpose of the NDIS was when it was introduced.
Kind regards,
, Qld.