National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1005
Senate Standing Committee on Community Affairs Re: NDIS Amendment (Securing the NDIS) Bill 2026
As much as I want to write a well-structured formal submission, directly addressing each proposed change to the NDIS about which I am concerned, that is far beyond my current functional capacity. Instead, I will share my personal story, addressing broader aspects of the proposed changes.
Who am I?
I am a 50yo mum, wife and child of elderly parents (79, 83), living in Queensland. I am also a professional engineer with 24 years of experience and specialist expertise.
My primary disability
For over a decade, I have been in chronic burnout and struggling to meet all the demands placed on me in those different roles. But my entire life I had always been told “just try harder”, so, for many years, that’s what I continued to do - it just made the burnout worse and added new types of burnout (e.g. carer burnout). For years, I pushed myself far past what was safe and healthy for me, disregarding my wellbeing, in an effort to meet our culture’s expectations for mums, wives, adult children of ageing parents, and employees; I consistently put myself last, ignoring my own needs, and that took an enormous toll on my functional capacity, which is now decimated to the point that I struggle with basic self-care. I know now that I pushed myself too hard and had been lacking critical supports, but, until recently, I had never heard of the term “functional capacity” and wasn’t aware I needed supports to preserve it. But, despite already pushing myself too hard for too long, the message now coming from the government is that I am not doing enough and should be doing more to support my disabled child, disabled husband and elderly parents (preferably, while also staying in paid employment). How? I’m already not coping. Three years ago, I learned I am autistic, and that my primary burnout is autistic burnout. A formal assessment also diagnosed me with ADHD and social anxiety. I also have a number of physiological chronic illnesses, most of which are also permanent and all of which further complicate my support needs.
My current severely-reduced functional capacity is the consequence of decades of unmet needs and inadequate/missing supports. Denying disable people access to the supports they need because the short-term cost is inconvenient to the federal budget will have significant long-term consequences and costs (both financial and human). Preventing a crisis is almost always cheaper than fixing it – this was the original intent of the early access pathway.
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1005
My current NDIS experience as the parent of a participant
Around the same time, my child was also assessed, with a similar outcome. They were increasingly struggling with “school can’t”, so we applied to NDIS because that was the only way we could access supports that could help them build their functional capacity and give them the tools and skills they need to finish school and build a fulfilling (and productive) adult life in the future. They are now on their second 12-month NDIS plan. While going through our child’s assessment and diagnosis process, and subsequently applying for NDIS (and waiting 4 months for approval), we self-funded 12 months of one support for our child. We couldn’t afford more than that single support. That one support cost us approximately $10k (out of pocket) over those 12 months and we had to redraw from our mortgage to pay for it, increasing our minimum mortgage repayments and adding significantly to our financial stress. (Their assessments, diagnosis and evidence to support their application cost another $5k out of pocket on top of that in the same 12-month period.) Gaining access to NDIS not only relieved the unsustainable financial strain of self-funding that one support, it also gave our child access to additional supports we could not afford to
I am incredibly grateful for the NDIS enabling us to provide our child with more supports than we could afford to self-fund and better meet their needs. The proposed bill may result in our child’s removal from the NDIS and loss of access to the supports they need.
self-fund. [Side note: With a diagnosis in their teens, our child is considered late-diagnosed. We are living the consequences of an autistic child not being recognised or receiving the supports they needed in early childhood. I am deeply concerned by the Thriving Kids program. I do not believe it will meet the needs of young autistic children and I think it is more likely to cause preventable harm to an entire generation of autistic Australians. Furthermore, the reliance on functioning/severity labels that have no clinical validity and do not consider the internal experience of autistic individuals, only the impact of their behaviours on others, is deeply concerning and fundamentally ableist.]
Why am I applying to become an NDIS participant?
After completing my formal assessment, I chose to not apply for my own NDIS plan. The process of applying for our child’s NDIS plan, and the ongoing administration load after approval, was already overwhelming and I didn’t want to double that load with my own plan. Instead, I continued to self-fund one therapy for myself. However, due to our financial limitations, and the 10-session limit on mental health plans through Medicare, I can only afford monthly appointments, which is not enough. I have also seen a psychiatrist to trial ADHD medications (which have not helped) and searched extensively for community supports (without success). So, for three years, I self-funded what I could and prayed it would be enough. It wasn’t. Out of desperation, I am now in the process of applying for my own NDIS plan.
I have reached a point where, if I do not gain access to the supports I need, I will need to cease paid employment. I cannot continue unsupported any longer. The proposed bill increases the risk that IPagewill be2 ofdenied4 access to the supports26 IMayneed.2026
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1005
My work history
I started my current job in 2002 and have worked hard to develop my professional skills and expert knowledge. Earlier in life, I started working in my first job (my parents’ business) in 1986, at the age of 9, and I continued working for them part-time (often unpaid) until they retired in 2004 (yes, I was working both full-time [up to 70hrs/week] as a graduate engineer AND weekends for my parents’ business for over a year). I have worked hard my entire adult life and done everything I can to be self-sufficient, so admitting I need help is difficult. Actually asking for help is even more difficult. And just when I finally recognise the help I need and start to ask for that help, the government starts telling me I don’t deserve it and that, on the contrary, I should be doing more. People like me (autistic people and mothers of NDIS participants) are being framed as rorters, bludgers, and undeserving of taxpayer’s support, and this
I have worked hard my entire life and now I need help. I want to keep working. The proposed NDIS bill threatens to prevent me accessing the supports I need and force me out of paid employment.
has caused me a lot of distress and undeserved shame.
My fears
After investing thousands of dollars (out of pocket) to gather the evidence required to apply, even if I successfully apply now, will I be one of the 300,000 people to be denied access to the NDIS by 2030? If my application is approved this year, I will live with the constant fear of losing it, and all the supports it provides, if the NDIS Minister is granted the power to remove entire cohorts and/or support types regardless of individual needs of the affected participants. There are no supports available to me outside the NDIS that will allow me to continue paid employment - I have spent the last three years unsuccessfully searching for them. If I am denied access to NDIS supports and our child also loses
I am scared because, even with genuine and proven need that falls within the scope of the original intent of the NDIS, access is not assured and may change without warning, subject to the whims of the government and NDIS Minister rather than the individual participant’s needs.
their access to the NDIS, our family’s current crisis will worsen.
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1005
My hope
If the NDIS provides the supports I need (and continues to support my child), I will have an opportunity to recover enough of my functional capacity to return to full-time work, increasing my payable income tax to approximately 1.5 times the funding I am requesting in my NDIS application (based on my current full-time equivalent salary,
The NDIS helps many disabled Australians access paid employment that would otherwise be infeasible with their disability. It is an investment, and the return on that investment should not be ignored when assessing the cost.
the ATO “simple tax calculator”, and the current NDIS support pricing caps).
Is this the Australia we want to be?
On election night last year, our Prime Minister said in his victory speech that Australians had voted for “kindness to those in need”. Removing and/or denying access to genuinely-needed supports feels like cruelty, and inflicting wholesale harm on a vulnerable group like the disabled community feels ashamedly unAustralian.
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