Submission 2386
31 May 2026
Attn: Committee Secretary, Senate Standing Committee on Community Affairs
Submission to the NDIS Amendment (securing the NDIS for Future Generations) Bill 2026
Dear Committee members,
My name is , I am a 33-year-old barrister, who married my partner of 12 years two months ago. Importantly, I am also a carer for my wife, who several years ago was diagnosed with ME/CFS (Myalgic Encephalomyelitis). Often with disabling conditions, it is not just one, and she has a number of other conditions that exist alongside this condition, however this is the most world impacting. Prior to this condition, my wife was the life of the party. She had peak fitness, running 5km every day, and a bright academic future, having commenced her PhD in electrical engineering, in a specific area of research in collaboration with the ARC Centre of Excellence for Gravitational Wave Discovery. She was passionate about her research and an excellent teacher, inspiring undergraduate students at Melbourne University about the wonders and uses (as she saw them) of mathematics and the sciences. She was a mentor for women in STEM and worked hard to be an excellent role model in her field. All this changed when she got sick overseas, and never fully recovered. I watched as this condition slowly took her future away from her. We needed to move to an apartment and out of a townhouse as she no longer had the energy to climb the stairs every day. Most days she could not leave the house, and some she couldn’t get out of bed, let alone the 5km runs she used to do every day. She struggled to teach her classes – the universities not allowing these to be taught online after the return to work from the pandemic. Most devastating of all, she had to withdraw from her PhD program as she had transferred the program to part-time, but even then, she was unable to make progress due to being bedridden, or in such a state of brain fog that she could not focus. This has had the impact of stripping her of her future, and large parts of her identity. It has been hard for her to stay in touch with friends as they work full-time jobs, and much of her days are spent at home, with a lack of social engagement, community and connection. Watching this condition take my partner from her effervescence has broken my heart. But she is not without a fight. She has refused to let this condition define her. She sought assistance from the NDIS given her condition, and was rejected. The NDIA said she had not tried enough treatments to justify her support. Her treating doctors had written pages and pages of reports of all the different tests and treatments she had trialled to no avail. She was still unable to walk, devoid of energy, and in significant amounts of chronic pain. Eventually the NDIS granted her application and some reprieve occurred, she was funded for a number of her appointments and services to help her claw back her life. I started seeing my partner again. But unfortunately recovery is not linear. She still had many days she could not get out of bed, let alone get to campus and teach. To make matters worse, our society is entirely unsympathetic to the needs of disabled people and even if she was able to get to campus, the rooms she taught in had no lift access or even chairs for her and students to sit in, preferring an ‘energised’ approach where students and staff were encouraged to collaborate on the numerous whiteboards in the room. She was able to get the university to move her classes to ground floor rooms or lift accessible rooms, and have chairs for rest and accessibility, but there were still some days she could not get there as her energy was depleted purely by the travel to get to campus, and then getting to the classroom.
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Submission 2386
Her treating team recommended a power wheelchair. The NDIS approved her a two-week trial to test out which one would be right for her. She did this trial, chose a chair and the team put in her request for the chair, only for it to be rejected. It wasn’t needed for her condition. This was because despite the trial being approved, and all of her treating supports in place for her chronic condition involving pain and energy depletion, the NDIS had said she was only being funded for supports for her autism. We then requested an internal review of this process, which was to no avail. We then sought the rejection be reviewed at the Administrative Review Tribunal, where the NDIA was represented by an internal representative and an external lawyer, billing for every email correspondence required to be sent. Through this process it became clear the internal bureaucracy or ‘governmental red tape’ involved in updating my wife’s condition on her NDIS plan to accurately reflect her circumstances. We would wait weeks for an update for the lawyer to advise that they were awaiting advice to come back from the department. Through this process, the NDIA required updated reports from all of my wife’s treating team. This was because this process had taken 2 years to progress, all while she had no assistive device to help her, and nothing in the meantime to assist her with her mobility issues. The reports that had been completed 2 years ago were determined to be outdated and new reports were required, requiring more of her NDIS funding to be spent to complete these, for reports that affirmed what had previously been shared – that she needed the wheelchair. Further, her condition had actually worsened during this period. Eventually we were able to obtain consent orders from the tribunal, as the NDIA agreed – she needed the device, and she needed to be funded for this condition. It took 2 years. It took 2 years of legal fees and fights and arguments that the ordinary Australian disabled citizen would be unable to do. My wife was fortunate to have married a barrister that was able to assist her with this process. The NDIA spent 2 years fighting this through internal reviews and the tribunal process over a wheelchair that cost $4000. We have sought FOI documents to obtain figures as to how much exactly was spent in legal fees to fight this application – an application they had conceded was appropriate and needed. I have gone at lengths to explain this story for the purpose of demonstrating that this Bill seems to go to lengths to restrict access to the NDIS for people that really need it under some guise that people are rorting the system. For every service provider that is somehow rorting the system there is internal bureaucracy of the NDIA, spending millions of dollars trying to prevent some of the most vulnerable Australians from being able to access care and services to make their lives easier. Our communities before us fought hard for health care entrenched within our system, and medicare is one of our country’s greatest achievements. The NDIS stands on the same footing as a universal human right, and a beacon to our nation that we take care of our citizens when they need it and are unable to take care of themselves. Our disabled population are some of the most vulnerable people, with employment laws enabling them to be paid under minimum wage, and building regulations being permitted to limit their access to the community and spaces. My issue with this Bill is that our disabled population need this funding – all this funding – that they should have access to. Their lives are already hard as it is, having the world stacked against them. They have lost career paths, friends, connections, semblance of themselves and who they used to be. The easier we can make their lives, to ease their suffering, and bring them back, the better we will be as a community. What they do not need however, is a government agency dedicating hundreds of millions of dollars purely to make that access more difficult. If my wife’s case took 2 years over $4000, I hesitate to think how many other cases there are out there of people spending all their energy just trying to fight for what they need.
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Submission 2386
They don’t need to do that. They need to live. And we should be helping them do that. I hesitate to think of the disabled citizens who have lost their lives because they hadn’t the ability to fight for the assistance they needed or the delay in getting there due to the unnecessary legal debacle required to access what they should be granted. My wife is lucky, she won her fight with the NDIS, but she lives in fear of her funding being cut by this legislation. She doesn’t know what she will be able to do – mentally trying to figure out how we can afford her supports if her access was cut. Those with disabilities shouldn’t have to endure this stress. We should not be taking from the population that life has already taken so much from.
I am content to speak on this submission if requested to do so, and I welcome the opportunity to represent carers of people with lifelong disabilities.
Kind Regards,
Barrister
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