Request for confidentiality:

I request that this personal submission is kept confidential, and that my name and any personal identifying details are withheld from publication.

I am writing to make a submission to the Senate Standing Committee on Community Affairs about the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.

I am an NDIS participant.

I am writing because I believe this amendment bill will cause terrible harms, not just to myself, but potentially to a great many disabled people. Please do not pass this bill as it is.

1. My disability experiences

I have multiple disabilities: psychosocial disabilities resulting from post traumatic stress disorder and schizophrenia, related to prolonged child sexual abuse. I live with a huge amount of fear and distress. For a very long time I was treated by the public mental health system, but that created lots more trauma because treatment was often forced against my will. I only had bad experience sof mental health services, and so I could never trust an organisation for support.

I have lived through how easily abuse happens in institutional settings, and how often my individual needs and dignity were sacrificed for what the organisation thought was ‘in my best interests’. It wasn’t. Inevitably, those organisations left me even more disabled.

Because of the side effects of psychiatric treatment I also have multiple physical disabilities that limit my mobility and cause constant pain. I am unable to do many common daily tasks on my own. I use many aids in my daily life.

2. My experience of the NDIS

Until the NDIS, for years I was trapped inside my home, rarely able to go out. I was not even able to shower because my bathroom is not accessible, and that created more health problems and of course it means I had to be more isolated – no-one wants to be around you when you smell, and I felt ashamed and stuck. I had to withdraw from university. I had to quit my casual work as well. And the whole time I was, often still am, on the brink of becoming unhoused. I regularly go without food in order to pay the rent. I was so lonely it felt unbearable, and I didn’t know how to get free.

I have only been on the NDIS for less than a year. It took a year to gather evidence and get approved and it was one of the hardest things I’ve ever had to do. I had endless appointments and assessments and felt turned inside out.

But now I am here, and already the NDIS has been life-saving.

The NDIS has not even recognised all my disabilities, so my supports don’t address all my needs. For example, I still have an inaccessible bathroom so I cannot shower at home. But I have carefully and slowly found independent support workers, outside of organisations (I cannot trust organisations because of my past experiences), but good and kind and skilled people who are supporting me in the ways I want and need to be supported.

My support team – none of them NDIS registered- includes people who all have professional qualifications and lots of experience, it’s just that they work as sole traders. They have all spent time to get to know me, they respect my needs around safety and dignity, and check in with each other to make sure there’s no gaps. The kinds of core supports I get are daily living assistance and community access. It helps me to:

 a) Access hygiene & pain relief - Go to the pool so I can feel a sense of freedom in the heated hydro pool (it’s the only place my pain isn't unbearable) and also use the disabled bathroom at the pool. Each pool visit takes about 4 hours, as I need help to pack, to get me out of the house and into the car, to get there, to get changed, swim, shower, get dressed, get home, and then help with laundry afterwards. I do this twice a week. It’s not as many showers as I’d like, but I have to budget my package.

 b) Additional hygiene – As I said above, I can’t shower at home as my bathroom isn’t accessible. But between pool visits I need some extra personal care (washing), which I get, at home, for parts of my body I cannot reach. Given my history of child sexual abuse, there is just no way I could let a stranger touch my body in this way. It has to be someone I know well and have built trust with. If I was made to use an organisation, we don’t get to choose who supports us. That feels very unsafe.

 c) Nutrition - Prepare meals so that I can eat within my limited budget and try to get more nutrition. Sometimes we go together to get food vouchers, or go to a food bank, and then work out what meals we can make from what we got. I am eating better and more regularly than I have in years.

 d) Safety and cleanliness at home - Help me with all the impossible household tasks that I can't do, so I no longer have trip hazards all over the place, so I have clean bed linen and clothes and dishes to eat from.

 e) Getting back to community, study and work - I didn’t think it would be possible, but my support workers are all helping me try to work out how to get back to going out, study and work again. There’s still a lot of problems to work through, but I really want to, and they are all committed to helping me. We practice leaving the house, different forms of transport, working out how to make things accessible, and take on brave challenges together.

3. On proposed cuts to community access funding:

You can see above the kinds of things I use my core supports for. I’d like to ask you to decide which of these essential supports I will have to go without if community access hours are cut from my plan?

• Should I give up showering at the local pool? Or accept that I can only shower once a week now?
• Or should I give up trying to get back to work and study?

• Or should I give up going to food banks, getting help at the shops, and go back to skipping meals and having worse health?

I would argue these are all essential, and I cannot imagine what I am supposed to do if I lose half of these supports.

4. On proposed cost savings:

a) Registered workers: If this bill goes through and I was made to use an organisation instead of independent workers of my choosing, it would mean I lose access to personal care, because I could not possibly tolerate strangers touching my body. So I’d get stuck inside again, and never get back to study or work. Eventually it would create health problems again (I have circulatory problems so I’m at high risk of infections) and then you wouldn’t have saved money because I’d probably end up in hospital and that costs a lot of money.

b) If I lost my NDIS package, it would cost the government even more: I feel so puzzled by the plans to throw lots of us off the scheme. I am so scared my plan will be cut. With NDIS support, it feels like within a year or two I’ll be likely to be doing some work or study again and need less welfare payments, and even start paying tax again. But If I get kicked off, there’s just no way I can work again.

So, if I am kicked off, the government would save on my NDIS package, but end up paying even more in lost tax, more welfare payments, and more health system costs. And all my support workers would lose their jobs too and that would cost the government. And that’s not even considering the personal impact on me, which would be heartbreaking. I dearly want to contribute to my community, I don’t want to be stuck in my house, slowly rotting. But I can’t do it without help, and that help needs to be based on my choice and control. I need to retain dignity and flexibility.

c) A note on capital/consumables and profiteering: Before I got on the NDIS, I needed a walker, and I saved up for months to buy one. I went to reputable provider who is registered with the NDIS. My walker was listed for $426. At the counter they asked me for my NDIS information and I said, no I am paying privately. And they said, well we’ll only charge you $370 then. That other price is for people on the NDIS. I have seen this time and again: the NDIS price, and the ‘normal’ price. This is a registered organisation. Registration is no guarantee of ethics. I am quite sure you could send out people to check on prices and find this for yourselves. I can only imagine how many millions of dollars are being gouged by these private registered companies, just because they can. I don’t see why disabled people have to lose their support, when private companies are doing this. Why can’t this kind of behaviour be a target for reform instead?

5. My fears about abuses:

I am horrified that I might be forced to have only registered workers at big disability organisations. Or worse, that I might be kicked off the NDIS and be expected to go back to the mental health system for support. There is no chance I would go to mainstream mental health or disability organisation again. I will simply withdraw from the world again, because as horrific as my life has been trying to live with multiple disabilities, at least no-one was violating me. Surely I am allowed to keep myself

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free from violation, after all I have already faced. Surely, we’ve all learned that the bigger the organisation, the more likely abuses are to happen? There have already been so many cases of abuse reported by disabled people from the big providers. I don’t understand why no-one is listening to us.

6. On the impacts of all this ‘reform’ on me:

Something I’ve already noticed is how this whole ‘reform’ process has impacted my mental health. I feel growing fear and despair. It is hard to sleep. I feel more scared to go outside because there is so much hate that has been stoked. I am very scared that I will have a crisis of some kind, but I’m trying really hard to hold on. I don’t want to end up in a psych hospital again, or back to the days when suicide was a daily battle, or for psychosis to get really big again. I’ve spent years without support because all the systems were so scary, and I finally have good and kind support people in my life and a taste of hope.

But I open social media and it feels like everyone hates us disabled people now. I feel like there’s a target on me. And having a psychosocial disability makes me feel more at risk for being cut. I don’t know what will happen to me, and it feels cruel that lives like mine are being used as political footballs.

Perhaps this is irrelevant to all of you reviewing this legislation, but I hope not. I hope whoever reads this can feel this in their heart. My whole life I have fallen through the cracks. As a child no-one helped me when I was abused. No-one came to save me, others helped keep me silent. I never experienced a moment of justice for those years of violence that still torment me. No-one in mental health helped me either, they just locked me up, drugged me up to my eyeballs, gave me shock treatment, and left me more scared and with extra, physical disabilities. The NDIS is the first time I have had true choice and genuine, beautiful support. It’s the most hopeful thing that’s ever happened to me… and it feels like it’s all about to be ripped away.

The NDIS has saved my life. I am terrified this bill will devastate my life. Please don’t let it pass. Please. Disabled lives matter.

7. Other comments:

   a) Consultation time:

   We have really not been given enough time to comment on this amendment bill. I understand the time we’ve been given, of two weeks, is not even consistent with Australian government policy guidelines. We disabled people already live with great stress and many barriers, a short timeframe like this feels cruel. For me, it has been immensely stressful to write this. It has taken a huge amount of time, and too many tears. I hope you decide to extend the consultation time because i have no doubt many people couldn’t get their submissions done in these conditions.

   b) Schedule 1 parts 8 and 9 – giving Ministers extraordinary powers over the NDIS without parliamentary debate or scrutiny:

    This feels like a dangerous change to make, and would leave all NDIS participants in perpetual fear that our supports may be taken away at any time. Ableism is so common, and the unique and diverse needs of disabled people are very complex. Having the same
   

diagnosis doesn’t mean our support needs are the same – bodies vary a lot.

Widespread changes to the NDSIS should not be made without widespread consultation with disabled communities, and the larger community.

c) Schedule 1 part 8 – requiring all treatments be exhausted, and ignoring environmental factors in assessment

• To me this is a shocking proposed change to the NDIS that seems inconsistent with human rights obligations, and would almost certainly lead to unconscionable harms.

• This amendment would create a devastating class divide amongst disabled people in Australia. The health system, and many treatments, are totally inaccessible to many of us on low income, and that’s even worse in regional areas. Many treatments are not on the PBS or fully funded by medicare. This bill would create a divide where poor disabled people who cannot afford medical treatments will be left without disability support, while the rich will get even more help. It is not just setting Australia up for an even worse situation for low income people, considering we already have welfare payments below the poverty line and a widespread housing crisis, but it will surely result in greater, potentially more expensive, pressures on the health, welfare and housing systems.

• The bill does not qualify what ‘all appropriate treatments’ means and that seems very dangerous. Does this include all possible treatments, even those without a solid medical evidence base? There are many off-label treatments that are disputed amongst healthcare providers – what will you ask us to do then? Who decides what is appropriate, and are they qualified to do so?

• What consideration has been given to requiring medical treatments that carry greater risk? For example, will people be required to trial potentially addictive drug treatments? Have surgical interventions that carry serious health risks? Will people with psychosocial disability be required to trial medication that causes cognitive impairment and obesity? Or to have electroconvulsive therapy (ECT) before applying to the NDIS? That is something I had, under considerable coercion, many years ago. It was not at all helpful, but it caused serious memory loss, a side effect that has been excruciating to live with over the years. Are you going to require people to risk losing their memory, or have other serious adverse effects, in order to access support?

• Surely the bill must allow some space for people to make decisions about what level of risk we are willing to take with our own bodies. This is an extraordinarily harmful proposal with no safeguarding, and no consideration of people’s financial means. It is dangerous and discriminatory. Please remove the proposal to require ‘exhausted appropriate treatments’.

d) On the proposal to use an unvalidated functional capacity assessment tool:

• I believe the way functional capacity is assessed by the NDIS is already problematic. If, like me, you have multiple disabilities, we are asked to ‘cut ourselves up’ and specify exactly how much each type of functioning (eg, mobility, communication) is impacted by each disability. This is nonsense, of course. Having complex psychosocial disabilities and physical disabilities means that almost all my functioning is impacted by almost all these conditions. And, there is an intersectional impact, where my mental health is impacted

by pain in my body, and my body is impacted by my mental health. There is a multiplying effect from having multiple disabilities which the NDIS refuses to acknowledge. This is well understood in medicine, yet the NDIS privileges bureaucracy over science. Assessments should consider the whole person, not carve us up.

• It seems to me that this new i-CAN tool will make this problem even worse, because it’s so specific yet superficial. There seem to be so many other issues with this tool. It is not well -tested. It will not be able to capture the important nuances in each person’s life that impact our disability and what kinds of support we need (we are not robots – we are human beings with soft, unique bodies and complicated, differing lives and contexts). It is not culturally appropriate for First Nations People. And it doesn’t allow for fluctuating needs.

• For me, it was burdensome to have to get a functional capacity assessment to apply for the NDIS. I believe this should have been funded by the NDIS or health system (it is a huge barrier for people like me on a very low income). However the iCan is not an answer either. What was important in my FCA, and my other application reports, was that clinicians took time to get to know me, to visit me at home, to witness and understand how my disabilities impact my daily life and what I actually need in terms of support. This kind of process requires human beings, relationships, and skills. It cannot be automated. I fear we are heading into another robodebt situation, with appalling consequences. Please remember that locking us out of support does not make us go away – and our needs, and related costs, will pop up in other government funding streams.

Thank you for your consideration of my submission. I sincerely hope that the Senate Standing Committee puts the lives of disabled people first in this process. We are not lines in a budget, we are human beings, already facing a mountain of barriers in the world. There are far more sensible ways to save money. It is quite shocking to me that we are not increasing taxes on billionaires or polluters, and that funding defence matters more than funding support for disabled citizens.

But also, I urge you to consider that the NDIS also enriches the larger economy, and that these proposed cuts will have massive ripples not just in our lives, but across the economy and many other government systems.

The NDIS brings us disabled people dignity, rights, community, work, belonging, wellbeing and freedom—please don’t take that away.