Submission 2669
Submission for the NDIS Senate Amendment (Securing the NDIS for future
Generations) Bill 2026
Name: Date: 31/5/2026 Role: Disabled community member and NDIS participant
Introduction and context: Dear committee,
I am a 27-year-old woman from Melbourne who has been on the NDIS for a couple of years now. I grew up and have lived most of my life as an able-bodied person but when I got sick at 23 years old my whole life was flipped on its head. I was studying my PhD in astrophysics at Monash university and then only a few months later, I was stuck in a hospital room desperately searching for answers.
I now live with two rare neuroimmune diseases, chronic inflammatory demyelinating polyneuropathy (CIDP), and neuromyelitis optica (NMO). CIDP is an autoimmune disease in which the immune cells mistakenly attack the myelin and nerves in the peripheral nervous system. NMO is an ultrarare condition in which the immune system attacks the central nervous system which is comprised of the spinal cord, brain, optic nerves, and brain stem. NMO can very quickly be fatal if not treated properly and immediately and even with proper treatment it often leads to profound lifelong disability. Together these diseases mean that I have limited sensation of much of my body, reduced strength in all four limbs, and a spinal cord lesion which spans most of my spinal cord (C1-L1). I also have paralysis in many of the muscles in my back and hips, reduced vision due to optic neuritis, intense chronic pain, and fatigue, and bladder and bowel dysfunction. These demyelinating diseases mean I must use a wheelchair to function and access the community, I had to have major surgery to place an ileostomy (stoma) and I still spend vast amounts of time in hospital trying to prevent the disease from causing more damage.
It is likely that overtime my condition will worsen, and these conditions are life limiting meaning that either the disease itself or the treatment I receive to control it will likely cause my death while I’m still I’m still young. What happened to me was sudden, drastic, and completely random. There was nothing I could have done to prevent it, and it could happen to anyone at any time.
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My journey so far with the NDIS:
When at first I applied for the NDIS I was rejected, despite my significant and permanent physical disability, but on my second attempt I was accepted into the scheme. That was far from the end of my battle to get the help I needed though and by the time the NDIS provided me with a wheelchair, I had spent years crawling on the floor to get to the bathroom, completely trapped in my inaccessible apartment, and then using unsafe aids with the help of my family to move around. I am so grateful for my wonderful wheelchair now, but the delays in care caused physical harm to me and my family members. My story is so common that almost no one I know on the NDIS was accepted on their first attempt despite their significant and permanent disabilities. It is far from easy to be accepted onto the NDIS as it is.
Furthermore, upon putting in a change of circumstances form because my NMO had relapsed and my disability had progressed, I then waited 9 months for anyone to even look at it, despite repeated check ins, calls and emails. When a planner finally did look at it, they told me explicitly that they couldn’t be bothered reading my continence report and that if I didn’t answer the phone after three rings when she called me, she would cancel my entire plan. I wasn’t shocked when she denied the evidence based supports I had asked for, but I desperately needed them and so I appealed the decision at the ART. Here the NDIA spent thousands of dollars on lawyers to argue about things like whether the $1300 bath lift I needed to be able to wash myself was necessary. Ultimately, they decided I didn’t need to be able to wash independently and denied this support.
Other supports like support work and specialised neurophysio therapy were funded, but it was a taxing battle to get them approved. I had to hear people who know nothing about me, NMO, or CIDP tell me I didn’t need the supports my medical providers had prescribed. The entire thing was demoralising and dehumanising. On top of the distress this process caused and despite the medical evidence which proves my PTSD is due to my disabilities and all the heinous medical interventions that come with NMO and CIDP, they refused to fund any form of psychology, and to this day I cannot afford this support alone. The amount of money the NDIA has spent paying lawyers to fight me and my very experienced medical providers would have well and truly paid for the supports I need, including those that were denied and which I am still suffering without.
I acknowledge that the government has to make cost cutting measures and that there is real wasted money in the NDIS, but it is coming from the structure of
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the NDIA and the delays it causes cause very real harm to very real people like me.
Position on the current Bill: I do not support the current Bill (securing the NDIS for future generations) as I can see the harm it will cause to current participants and those people who are yet to become disabled. The NDIS is not currently working well to support people with disabilities and further reducing the human-to-human interactions, support work hours, and needs assessments will only cause the quality of the scheme to rapidly deteriorate. I have serious concerns for the harm this Bill will do to the disabled community if it is passed into law.
My key concerns:
- Community participation support work hours Currently my support work hours are split into two categories, one is assistance with daily life, and the other is assistance with social, economic, and community participation. In order to show you why I think broadly cutting social and community participation support work hours is inhumane I will break down what I currently use my funded support work hours for:
For 48 weeks of the year, I have 20 hours of funding for assistance with daily life (self-care), roughly 4 hours per weekday and none on the weekends. During these hours my support workers assist me to:
Shower
Wash and dry my hair Have breakfast and lunch Do my neurophysiology exercises at home Work from home (they will set up my area so that I can physically work) Put compression socks on Do laundry Prepare and drink electrolytes (without which I faint every day) Tidy my home Clean dishes Change my sheets Fold laundry Clean my wheelchair Take my medication Keep my pain under control with medication, rest, heat and cold therapy etc. Bake and prepare meals for my family once a week Do medical admin tasks like book appointments and order stoma supplies
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For 48 weeks of the year, I have 15 hours per week of social, economic, and community participation. I also have 6 hours of Saturday social and community support work per month. During a typical week these hours are used to:
Monday: Drive me to an appointment with my GP (3 hour round trip) Tuesday: Drive me to neurophysio appointment at the rehab hospital (4 hour round trip) Wednesday: Take me to get my bloods tested (1 hour round trip) and to hydrotherapy (3 hour round trip) Thursday: Often a day at home, if we go anywhere it would probably be to the local shops and back (0-2 hours) Friday: Take me to immunotherapy in hospital (10 hour round trip)
Total: 21 hours per week of entirely medical based, necessary appointments. 0 hours of access to the community, time spent with friends or family, work opportunities, or anything leisure based.
As you can see, just doing the bare minimum medical appointments to keep myself alive and at my current baseline uses all of my ‘community participation’ support work hours and cuts into the hours I have remaining for self-care. This often means I have no independence around showering and have to have family members assist me with it. I also cannot contribute to my household as I would like to or as any able-bodied 27-year-old would. My situation is not unique, I know many members of the disabled community who also use all of the community participation support work hours to attend necessary medical appointments and hence who are left isolated and without the supports they need.
I am deeply concerned that if the minister and NDIA apply blanket, systemic or percentage-based cuts to assistance with social, economic, and community participation support work hours I will not be able to access the medical care that keeps me alive. As I mentioned, without intensive immunotherapy diseases like NMO can quickly be fatal and/or lead to more cumulative disability. I fear these cuts could be life-threatening to someone like me.
Spending in the category assistance with social, economic, and community participation support work hours is not frivolous or unnecessary spending that can be cut without consequence. These support work hours are used to keep people alive, healthy, and out of hospital and sweeping cuts to them will be dangerous. In addition, this will be costly to the economy with people like me spending vast amounts more time in hospital and unable to work due to these cuts.
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- Changes to reassessments and plan reviews I understand that a seemingly simple way to cut spending is to reduce plan reassessments and in cases where the participant agrees their needs have not changed and they are being sufficiently supported, I think this is very wise.
However, I am concerned that the bill will reduce participants ability to have necessary plan reassessments and to submit change of circumstance requests.
As someone with a rare disease (NMO) that has relapsed/progressed multiple times since first being accepted onto the NDIS, I know just how drastically disability can change overnight let alone over the course of a year or more. When my first plan was written up, I did not have vision loss, I did not have an ileostomy or an implanted port, and I had more sensation, movement, and power all over my body than I currently have. The supports I need now, only a couple of years later, are drastically different to what I required then.
I have personally experienced that currently the plan reassessment and change of circumstance requests take at minimum six months, often longer. In my case this left me without the supports I desperately needed for over a year By the time we had appealed and then settled at the ART and finally had some of my supports approved. As it is this system is causing enormous amounts of suffering to participants and so further cutting and restricting these requests will be dangerous and harmful for the disabled community.
To use an example of a disease that is more common than NMO, imagine what would happen if a patient with MND/ALS had to keep a plan with the same support needs for 2 years. If they followed the typical trajectory of the disease they would have progressed from mobile and largely able-bodied, to entirely wheelchair bound, to bed bound and requiring oxygen and feeding tubes, and sadly to dead within the time of their NDIS plan. Imagine the suffering that would be caused if they couldn’t request multiple change of circumstances within that time. There are many diseases/disabilities with relapsing or progressive prognosis’ like this NMO, MS, MND, MOGAD, SMA, and muscular dystrophy are just a few examples. Patients like me with a disease like this are already going through too much without this bill making it harder for us to adjust to our changing needs.
Disability is so rarely as simple and stable as needing one set of supports for the rest of your life and the NDIS must be able to change the level of supports participants receive based on their changing needs. Trust me no one wants a progressive disease, we do not want to get more disabled over our lifetimes, it is
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terrifying! It is even more terrifying to know that when our needs change in the future we will not have the supports we need to survive outside a hospital bed for vast amounts of time, if at all. We should be able to rely on our NDIS plans to change with our support needs and to do this we need to have frequent plan reassessments at the request of participants and without restriction.
- Increased use of administrative or automated systems The increased use of automated systems concerns me as someone with a rare disease. NMO is so rare than there are less than a hundred patients in the country and each one of us looks completely different. NMO can attack the optic nerves and so some patients are legally blind, it can also attack the brain stem causing gastroparesis which requires feeding tubes or total parental nutrition. In cases like mine it attacks the spinal cord, causing spinal cord injury and just like traumatic spinal cord injuries (caused in events like a car crash) every SCI patient is entirely different. Many of us deal with incontinence, mobility issues, sexual dysfunction, autonomic dysfunction, paralysis, and nerve pain, but there is no typical NMO patient, we are all unique.
There is no way for a computer or AI system to know and understand the complexities of a rare disease like NMO, or how it interacts with my other conditions CIDP and PTSD. It takes a human-to-human conversation to understand the support needs of anyone, but especially someone with a rare and complex disability like me.
I have experienced bullying, derogatory and dehumanising comments from NDIA planners in the past (which have been reported to the NDIA) who showed me they didn’t understand the very basics of disability. Yet even with this experience, I still think participants would receive more accurate and appropriate plans from a person than from an automated or AI system.
I also worry about the privacy of automated or AI systems as the evidence we are required to give the NDIA is the most personal information imaginable. We provide information about how we go to the toilet, shower, eat, manage our mental and physical health, get dressed, manage our medical devices etc. That is not information anyone wants stolen or being used against participants.
Human beings, while not perfect, and certainly in need of proper disability and empathy training, are capable of understanding nuance and complexity in ways computers cannot. Hence, participant’s plans need to be based on real human conversations not on an automated system in order to reduce harm and save money having to redo inaccurate plans.
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In conclusion:
I believe that if this bill is passed as it is, it will be incredibly harmful to the disabled community and to the Australian economy.
I ask the committee to consider that the current NDIS system is not supporting disabled people well and the changes suggested in this bill will remove supports participants are already clinging to. An alternative cost saving measure is to investigate the current way the NDIA runs and the wasted money spent on needless NDIA and ART appeals where the participant ultimately wins and hence proves they needed the supports from the beginning. Cases like mine are widespread and vast amounts of money are being poured into the NDIA and their lawyers, when had the correct decision been made initially, less tax payer money would be spent, and disabled people would be better supported in shorter timeframes.
Removing or reducing community access and participation support work hours will at best reduce the quality of life of already struggling Australians. In cases like mine it will remove my access to treatment that aims to keep my rare, aggressive disease under control. Without this treatment my disease will continue to progress making me more and more disabled or ultimately taking my life. The costs alone of prolonged hospital stays, life saving measures, and palliative care would be very expensive to the government, far more so than funding the “community participation” support work I need to receive treatment. Please do not let this bill remove access to the medical care participants like myself need, just to live.
Likewise, restricting participants ability to request plan reassessments or change of circumstances does not acknowledge the reality that disability is rarely static and for people like me, is unfortunately progressive. Without thorough and timely plan reassessments people will be stuck in hospital beds, unable to return home and adjust to their new level of ability and quality of life. This will be costly and cruel. Participants must be able to request a change to their level of support in order for the NDIS to continue to function and support Australians who are already struggling with horrible progressive disabilities.
Finally, automated systems are not the way forward for plan reassessments. They fail to recognise the nuance and complexity of rare disease patients and disabilities in general. Participants plans are sensitive, vitally important documents than dictate quality of life and so they must be done with the utmost care, empathy, and expertise which can only happen in human-to-human
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interactions. These human plan reassessment conversations as well as participants data privacy must be protected in this bill.
I thank the committee for considering my lived experience when reviewing this bill and I ask you to not let it pass without appropriate changes.
Best wishes,