This submission is regarding the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
My background: I have been on an NDIS Plan for 2 years for a range of severe capacity limitations that impact all aspects of my life due to ME/CFS of 37 years duration. It has been life changing, and life saving for me. It has enabled me to continue living independently in my small house, with dignity, and to continue doing small amounts of work as a writer/author. I consider this my social and economic contribution, and being able to continue this work (which I have spent 40 years gaining experience in), is vital to my mental health and will to live.
I wish to make the following points about the current NDIS scheme —
It is currently already extremely hard to gain access, and the demands of the application process means only those with special skills or help can get through. And this is not democratic or fair. —ME/CFS is one of the disabilities that requires extensive evidence of permanence, severity of incapacity, and benefit of being on the scheme. As I understand it, this level of rigor is now to be extended to all applications.
Putting in a successful application took me a full year — to understand what was required, gather evidence and work out how to piece it together to cover all the bases. Partly this was due to my limited capacity. But it was also simply an incredibly fraught and immensely challenging task. I have a PhD, and have written and published books, and doing this application was possibly the hardest thing I have ever done. It was emotionally, physically and intellectually gruelling. As evidence of how hard it is, only a tiny fraction of people in Australia who have had their lives blighted by this deeply under-researched condition (ME/CFS) have been accepted into the NDIS. For instance my nephew, who has had severe ME/CFS for 20 years and cannot stand up without falling over, has applied 7 times and been rejected. His wife is a nurse and they have sought help with the applications. But it is such a precise and challenging application process, where any error in something a specialist report says, can get you knocked back. If this is extended to all disabled people, then only those with the means and education and cognitive ability will be able to be accepted.
NDIS is one of the best job creation schemes the government has and is valuable to the entire community for what it brings. —Money spent on Support Workers is not ‘wasted’, it is ploughed back into local economies through wages that then gets spent on goods and services and this benefits the entire economy, especially in rural and regional areas. —A government budget is not like a household budget and the role of a government is not to ‘balance the books’ but to balance the economy — to invest in things that benefit the whole community and as long as the resources are there — ie people who need work and are willing to do it — this is a gain to the economy, not a loss. —The idea that the NDIS is ‘too costly’ is part of an out-dated economic metaphor. —You cannot pull billions of dollars of wages out of the economy without having a major negative effect. This is not good economic governance. It is mistaken and will impact negatively on tens of thousands of people, and through their loss of income, on all the businesses they support.
It is the role of a good government to explain this to the electorate. To choose evidence-based policy and then educate the electorate as to why it works.
The impacts of these changes will disproportionately affect women — as the majority of Support Workers who will lose hours over this are women, and the majority of people who are carers and who will have to give up their jobs to take over the care of their disabled relatives are women.
Independent Support Workers are not the problem. —My support workers bring a wealth of experience and talent and compassion to what they do for me, and work hard to earn their hourly rates. It can be a very unpredictable job, with split shifts, and demanding physically, emotionally and intellectually. SW is not for everyone. —It’s taken me two years to slowly build up a small team, because it is really hard to train and communicate needs and find the right fit, and someone available at the right times, and who lives nearby. —None of my SW would be able to afford high registration costs. And as they are fitting Support work hours around other family, caring or education obligations, they are unlikely to be able to afford to work at drastically reduced rates for an agency. They are skilled at building relationships with their clients and knowing and anticipating complex needs. —Not one of them is exploiting the system.
—None of them are accumulating wealth from this. They all spend the money on their families and daily living and it goes straight back into the community.
The NDIS enables me to contribute back to society in the form of casual home based work, and occasional engagement with my neighbours and community in supportive ways. —Without it, I am basically just surviving. —Before getting it, I had suicidal thoughts most days. Since getting on the NDIS, I can imagine a future for myself and no longer have those thoughts.
—Community engagement is not a luxury, it is a right. And it benefits the whole community. The NDIS through community engagement funding is fundamentally altering our society in a positive way that has benefit for everyone - by making difference and diversity visible and the multiple varied ways we all contribute to each other experiential and recognised and supported. The thought that we could return to the days when disabled people were hidden away in their homes or institutions, and where someone in their family sacrificed their entire life and work to care for them, is frankly appalling.
—The NDIS is a national insurance scheme. Everyone benefits from knowing this is there if they need it. In the same way that most of us who pay our premiums for housing insurance, car insurance, or medical insurance in the form of Medicare, may never draw on that money in our lifetime if we are lucky - it is considered good economics to pay into it and know it’s there. Yes insurance is costly. But it is vital.
There are so many other things that are truly ‘unsustainable’ that the government continues to support and expand at huge expense. These are things that truly threaten the future of our society in the form of increased climate chaos and devastation, risking water supplies and agriculture, entrenching generational poverty which foments unrest and requires more and more expensive policing, and so on.
The NDIS is not one of these unsustainable things. We have the resources in the form of labour force. And the benefits are absolutely undeniable. It is an investment in community in so many ways, and an investment in a healthy economy.
Not every person who is saved by extensive and expensive hospital care goes on to do great things. But we treat everyone who goes to hospital as valuable and worth saving. Because we do not know the myriad ways each person is interconnected and what are their gifts and strengths and unique contributions.
How is it different for disabled people?
We are very good in our society at acute caring — we don’t put caps on treatment costs for someone with cancer or after a car accident. But for a range of reasons we find long-term caring challenging.
The NDIS and its effects is a creation of a more evolved society that can embrace the need for long term compassion and care of all its community members. Not just those able to suit some very narrow requirements of physical or cognitive ‘normality’.
We are only beginning to realise the benefits of greater support and access for a range of people and their dedicated carers who in the past were hidden away and forced into lives of enormous stress and precocity. These people — both the disabled people themselves, with their vast store of experience, resilience, unique traits and perspectives — and those who love them — are now able to engage and contribute and have a voice.
This is what true sustainability of a society requires — diversity. Monocultures inevitably collapse.
The social licence you have been given as a government is to govern for all, and to govern in a way that creates the greatest resilience and strength of a diverse, compassionate, involved community, that has emotional-intelligence gained from experiencing all that life has to offer.
Investment in the NDIS helps the economy: In an economy with its own currency, such as Australia, the only practical limitation on investing money is that the resources - in terms of labour or physical resources — match the investment. As long as these are available and scarcity of these is not created via the investment, then investing more money into a productive, worthwhile, and beneficial scheme is not going to cause inflation, but will help balance the economy in meaningful ways. (Please investigate Modern Monetary Theory for confirmation about this.)
Living with dignity and being able to access education, work, and community engagement is a right.
Reforms to this scheme that are purely motivated by saving money are bound to be unjust, and inefficient in the end.
Thank you for reading my submission.