Submission 1879

To the Community Affairs Committee

RE: National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

I wish to respond to this bill, and to do so I will provide some background context to my personal journey as a person with dealing with multiple chronic illnesses that I have had since birth which in turn has led to permanent disabilities, of which the NDIS has been a major part of my life since I was accepted into the scheme in 2020.

I was born with multiple congenital malformations at birth, from malformed kidneys, a malformed bladder and malformed digestive system, this led to a kidney transplant, which recently failed, requiring in dialysis 3 days a week for up to 5 hours a day, of which I now do at home, so that 5 hours a day has now increased to approximately 7 hours a day in total to complete the treatment from start to finish, with no guarantees of a second transplant. I also had my bladder reconstructed using my intestine and appendix to create a bladder, prior to that I had no choice but to wear nappies for the first 7 years of my life, the downside to this though is a chronic permanent infection and mucus build up that requires surgery to clean out the bladder one to two times per year which is a hospital admission, one of which I will need to do for the rest of my life, and thirdly, the creation of an ostomy to deal with the digestive malformation, of which is constant electrolyte issues not helped by kidney disease. All of these physical conditions are lifelong, and have led to mental health issues, including diagnosed PTSD. I have also been diagnosed with ASD type 2 (previously known as Aspergers Syndrome), and Bipolar Disorder Type 2, which cannot be treated due to my kidney issues (Lithium is toxic for the kidney). The impacts of those mental health conditions range from sensory issues (fire alarms, gunshots, fireworks, balloons bursting), whereby my brain will go into an uncontrollable panic, and makes spending time in any building with a fire alarm anxiety inducing the longer I’m in that building, through to having times of depression then mixed with high levels of confidence before going back into a depressive phase.

Submission 1879

Prior to the NDIS, I was receiving state based block funding for a certain amount of

hours with very little choice on who I could pick to provide assistance. My apartment would end up extremely messy as I lacked the executive function and stamina to keep up with housework and looking after myself. In the years leading up to dialysis as well, compounded by my mental health issues and electrolyte issues, my stamina collapsed

requiring the use of an electric wheelchair to get around of which I will require use of in the medium to long term.

The NDIS allowed me to develop confidence and independence, I am now at university, and contributing to the economy and society, without the constant worry of trying to manage my health and ensuring disability, while ensuring that my house remains clean, which is critical for both home dialysis and my immune suppression. Prior to the NDIS, I was frequently in and out of hospital, dealing with electrolyte issues and infections. Since the NDIS, I have only gone to hospital on a few occasions, with majority of it being planned without electrolyte issues and infection issues, therefore saving the state and federal governments money in my treatment, and ensuring that I am not taking up a bed for others.

The key areas of the bill that I am concerned about:

Functional supports (Section 9B)

The issue I have with only applying to functional supports is, at least in my case, my disability fluctuates, some days I can appear perfectly normal and responsive, while other days I can be withdrawn. Some days I can have quite a bit of energy, other days, I am extremely lethargic and motivation disappears. The problem with functional supports, is that it does not consider how chronic illnesses such as kidney disease can also affect disabilities, like my mental health disabilities, and the body itself, it is quite common to have disabilities affecting other disabilities and chronic illnesses. The body itself is not black and white, there are a lot of interacting parts of the body that affect each other and can make some symptoms be a lot more obvious and disabling,

Submission 1879

however, in fluctuating disabilities like my own, they are not constant, but enough to

cause disruption and difficulties on a near daily to weekly basis.

I am concerned that if the bill goes through, how will functional supports be considered, will fluctuating functionality be considered, or will the NDIS simply say that you are not disabled enough, even though the level of disability can be quite severe when the body is interactions that are affecting each other. And like I said, for myself, I might go a few days where I appear fine before it all goes downhill again, and I cannot predict how long

that will last or when that will happen. If I turn up to the NDIS for a functional evaluation, what happens if that happens on a good day? When I am in a high with my Bipolar, how will that explain to the NDIS when I appear confident and energetic? Having a standard assessment does not take in the wide impacts and variability of disability and potential

variations of the impacts on a day to day basis. Even people with a well accepted disability, cerebral palsy, may be impacted by this as depending on how severe it is, they may not be able to manage without a support worker, and may have days that they require a wheelchair, but equally they may get days where they can go out on their own

without a wheelchair or support worker. I have a friend who has cerebral palsy, and while he does get some days, he is quite independent, you can also tell he would not survive with less or no support that the NDIS provides.

Changes to require the impairment to be ‘permanent’ – Proposed subsections 24(5)(a) and 25(1B)(a) and proposed section 25A.

These sections looking at ensuring that the impairment is permanent, needs to take into

account where treatment might not be available due to medical reasons (eg: unable to take lithium to treat bipolar disorder due to kidney disease), on top of that, while kidney disease is not covered under the NDIS, the interactions with other disabilities can be quite impactful and long term, kidney disease itself cannot be cured, it is a lifelong condition, while there is treatment options such as transplants and dialysis, both forms of treatment come with various trade offs, including immune suppression leading to a high infection risk, higher risk of cancer, heart failure, early onset dementia, and in turn

Submission 1879

can make depression be much more severe than in other people without kidney

disease, this is due to the toxin buildup affecting the brain itself and in a failing kidney, this could lead to existing mental health and psychosocial disabilities becoming more severe over time and can become permanent even with treatment. I know with myself as my kidney transplant failed over a 10 year period, my mental health conditions, in

particular my Bipolar and ASD type 2 became more obvious and severe. When I had a healthy transplant in my younger years, I was able to mask better my ASD Type 2 where I was a lot more functional and able to self manage my panic attacks if a fire alarm went off for example, and my depressive states were less severe. As I got older and my kidney

got close to failure (but not enough failure for dialysis), I became less able to mask and manage my uncontrollable panic attacks if a sudden loud noise went off and my depressive states went from days to weeks, with motivation collapsing. I did try treatment but this never worked, my mental health conditions had deteriorated to the point of no return, and of course in the case of my Bipolar, it was never able to be treated in the first place due to the kidney issues and it never will be. So in terms of this

section of the bill, it is critical that other medical conditions that may not fall under the NDIS still need to be considered as even though they are not covered under the NDIS, they still interact with the other disabilities, and in my case cannot be treated due to the medical condition, kidney disease.

I have a lot more to say, but this is as much as my mental and physical energy can take me, so I will have to leave it for others to speak on my behalf of the other concerning parts of this bill.

Thank you for your time and I hope this and other submissions is seriously considered. Otherwise people left of the NDIS and finding state supports to be insufficient will lead to an increase in hospitalisation and potentially even death.

Sincerely,