National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2815
Dear Officer,
This is a personal submission regarding the NationalDisabilityInsuranceSchemeAmendment (SecuringtheNDISforFutureGenerations)Bill2026.
I am a 27 year old patient with a genetic blood disease called Acute intermittent Porphyria and a range of other conditions who has currently not been eligible for Disability due to the instability, complexity and uncertainty of my medical situation and the episodic nature of my condition, but has been sick for 6 years. I have been under full time care by my family since my last major episode in February 2025 in Germany for where I was wheelchaired directly back to Australia after a 10 day hospital admission.
I am asking you to reconsider the requirement for “all new treatments” to assess for permanence of the condition. As well as to expand the definition of permanence in situations of diagnostic uncertainty and delays lasting more than 2 years and/or after being assessed by more than 7 specialists. Alongside this, to allow for support in episodic and unstable conditions, especially during the phases with disabling capacity.
Due to the nature of the condition, it is difficult to prove that every time I have symptoms that this is from this condition. This is because testing sample needs to be extremely light protected and needs to be a urine test at the worst of the attack.
However as I get severe muscle weakness during episodes, I cannot move, I cannot talk, I cannot open my eyes, and I can start to struggle to breathe, it is impossible for me to get a urine test at the worst of the symptoms, especially with my older parents unable to lift me or help me. As this is a rare disease, nurses in the hospital are typically unaware of the importance of timing and for the proper testing procedure until hours after the worst of the symptoms have occurred. Typically, most doctors and nurses are rushed and panicked to try and stablize me before they even consider a urine test, especially if they haven’t seen it before (which is typically what happens in the Emergency department). This can result in many negative tests even if the symptoms were due to this condition and we cannot rule out if there is another condition causing these symptoms.
This means that doctors cannot rule out whether there is another condition at the same time. And due to the many negative tests as well as recovery from acute symptoms using conservative methods, I do not qualify to try for every available treatment for this condition as these are very expensive treatments that the hospital only reserves for people with the most proven attacks, due to costs, even if the research might suggest paitents may benefit otherwise.
And yet I have been sick for 6 years, I had to drop my studies, I can no longer work, my parents have been caring for me and working extra hard to try and cover the costs for me despite getting older, having conditions themselves and being utterly exhausted, my younger siblings have been caring for me by helping in payments, physically caring for me everyday and in many emergency situations, which puts so much pressure on them at 24 and 26 whilst they’re just starting to go into the workforce and with one of them also having a disabling condition that limits their ability to enter the workforce.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2815
I have seen multiple neurologist, multiple endocrinologist, immunologist, haematologist & oncologist, urologist, internal medicine specialist, geneticist, metabolic specialists, psychologist, cardiologist, gastroenterologist, dermatologist, ophthalmologist, and a thoracic physician. Despite all of this they still cannot rule out if I have another underlying condition and yet none of the doctors know what to do next.
When applying for Centrelink and talking to the officer for Centrelink, each officer recommended I look into Disability pension and NDIS. However as my condition is unstable by the nature of the conditions and uncertain, I am currently ineligible for either.
I also applied for my Centrelink to be backdated to at least when I came back to Australia from my hospital admission as I only had the capacity to do administrative tasks in October. However, despite having proof of my incapacity through multiple emergency visits including a brief icu stay after a reaction to a bone marrow biopsy, the legislation only allows for Centrelink to be back dated for 4 weeks before the date of application even in cases where medical incapacity is the sole reason for the delay in application. I asked in a situation where someone has a stroke for the first time and is in hospital recovering, how would they have the capacity to apply for Centrelink during the time of recovery. They said that they have no answer.
What am I supposed to do in this situation?
I love life. I love working. I keep trying to get back up. I keep trying to live life. But this is getting excruciatingly hard without any help what so ever. My family and I are utterly exhausted. We need help.
How do we keep falling through the cracks?
Thank you for taking the time to read this submission.