SUBMISSION TO THE SENATE COMMUNITY AFFAIRS LEGISLATION

COMMITTEE

Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

My name is , I’m a 38 year old NDIS participant with multiple invisible disabilities, and I’m currently using my limited energy and brain space to write this submission, instead of working more directly on my mental health, or trying to get out into the community.

I’ve been an NDIS participant since January 2024, but have been severely disabled long before that. I have psychosocial and neurodevelopmental disabilities that I’ve had since childhood, and a physical disability that has affected me for about 18 years.

Prior to getting disability support, I experienced homelessness, job loss, extended periods of unemployment, loss of friends and community, long periods of burnout, and hospitalisation, all directly or largely attributable to my mental illness and other disabilities. I don’t have informal supports, and when I did previously have friends try to support me, I needed so much help that they burned out and I lost those people in my life. Some of them also had to take time out of the workforce thanks to burnout from trying to support me.

It took about four years from when my psychiatrist identified that I needed the level of disability support provided by the NDIS to actually be accepted into the scheme. One of the issues I had was proving the permanence of my conditions. As an example, for one of my conditions, there are generally three accepted treatment modalities, and most people only need one or two to recover as much as possible. In my case, my psychiatrist only recommended two for me. However, to get access to the scheme, I still had to do all three, even though one of them was not clinically recommended. This therapy was not offered through the public system, so I had to spend a lot of time saving money and going without other needed therapy in order to do this therapy, which, as expected, did not significantly improve my condition. But I had to do this in order to satisfy the NDIA that I’d tried all available treatments, which delayed me getting the care I needed. My point in saying this is that the current definition of having tried “all available and appropriate reatments” is already very stringent, and tightening it further will only allow more people to fall through the cracks. And when we fall through the cracks, we lose capacity and end up relying on more and more services until we’re finally given the support we need.

However, despite being a participant for over two years, I’ve only had an NDIS plan with proper disability supports I can use for the last three months. I spent almost two years fighting, first to get a planning meeting (which took over four months, not the required 21 days) and then to get the supports that my doctor, therapist and OT all agreed that I needed. My first plan only contained 15 hours of Occupational Therapy - no core, no real

Incapacity building, nothing that would actually help me live with my disabilities. I had to go through the very stressful ART process for over a year before the NDIA recognised that I needed the supports originally recommended. In that time, I relied much more on helplines, some mainstream mental health services, and even residential mental health services like PARC. I was nearly hospitalised for the first time in years from the stress of trying to fight for necessary disability support without having any supports in place. I was also unable to use some mainstream services, as they expected NDIS participants to be supported by our NDIS plans. Many participants don’t have generous NDIS plans, and can’t afford to have sections of them reduced by an arbitrary percentage, especially when there are no other services available to pick up the slack. And, as has been pointed out by many activists, cutting funding doesn’t reduce the underlying need, and just pushes the costs elsewhere.

In the three months since I’ve had proper disability support, I’ve been able to see friends for the first time in months, or even years in some cases, start eating consistently and healthily, go outside semi regularly, shower consistently, go to the doctor and other medical appointments when I’ve needed to, and started to take control of my physical health, which has in turn positively affected my mental health. I’ve been able to take up some of my hobbies again, keep my home in a livable condition, and have had far fewer really bad mental health days. I’m also starting to notice fewer really bad pain days, and a slight decrease in overall pain, for the first time in about 10 years, which has been incredible. I can’t wait to see how much better my life can get. I’m also starting to look at options for getting back into the workforce part time. I haven’t been able to work in over eight years, and before that I wasn’t able to work consistently. But now, with good supports in place, it feels possible that I could find meaningful, paid work that I can do long term, even if it’s only part time. That is, if I can maintain my disability supports.

If any part of my plan can be cut at any time, with no notice, by the Minister for the NDIS, then I won’t be able to make future plans. If I want to go to a class or an event, or go on a trip, or anything I might need support with, I won’t feel comfortable booking or paying in advance, because I don’t know whether I’ll have access to the support I’ve been granted. I also can’t make concrete plans for work, or any future planning, knowing that any support I get, even if it’s already been agreed upon, can be taken away with no notice at the whim of whoever happens to be Minister.

One of the reasons I’ve been able to achieve so much in such a short time, is because I’m able to use my NDIS supports to help with all aspects of my disabilities. When my mental health is better, I’m more able to take care of my physical health, which reduces my pain and fatigue, which then also positively impacts my mental health. Currently, I don’t have to try to justify whether a particular symptom is more related to one impairment or another, I can just address it, which contributes to a positive cycle of me feeling better and being able to do more. Humans aren’t just a collection of discrete body parts and impairments, we’re whole people, with conditions and difficulties that interact with each other in lots of nuanced ways, and trying to separate out one “impairment” as being valid while the others aren’t, only hurts us. It’s also often impossible to do accurately. If this bill goes ahead with completely removing the “whole person” approach the NDIS was built on, then we’ll have a lot of people not getting their needs met, and

again having to rely more on other services, many of which don’t exist, or on unpaid carers. Again, legislating away the definition of disability doesn’t reduce the costs, it just shifts them.

I can’t say for sure, but I believe I’m in the cohort of people whose psychosocial disability might never have gotten severe enough to need the level of supports the NDS provides, had adequate treatment and lower level disability support been provided much earlier through mainstream systems. Unfortunately, though, I didn’t get the help and support I needed, and ended up losing so much function that now I do need a high level of support, and likely always will, although I do hope to be able to somewhat reduce the level of support eventually. I’m also very worried that I’m likely to be one of the people targeted for removal from the scheme. However, removing people like me from the scheme with an unsubstantiated promise of eventual foundational supports won’t remove the underlying need, and will allow me, and others like me, to deteriorate even further, and lose more capacity, which will only leave us needing more support in the long term. I’m also worried that if these foundational supports do eventuate, they won’t be funded well enough to support both those of us removed from the NDIS and the people who are currently in need of lower level supports in order to prevent needing more intensive supports later. If the foundational supports are supporting the 160,000 (or more) people removed from the scheme, that allows more people who currently need those supports to go without, and thus lose more function until they need NDS supports.

In principle, I support the introduction of foundational supports, as long as they’re funded and implemented properly, and are serving all the people who need them. But they don’t exist yet, and right now we have no idea what foundational supports for people with psychosocial or neurodevelopmental disabilities might look like, let alone whether they’ll be available to us. If the government were to invest in foundational supports first, and allow time for them to have an effect, and then have good evidence that they’re working for the people who need them, increasing capacity and preventing decline, then I might not be opposed to introducing tighter eligibility to the NDIS for new participants. But that’s not what’s happening. Instead, hundreds of thousands of people will lose, or never gain, needed support, without any safety net in place.

Disability costs a lot of money. Most disabled people know this on an individual level, as we’re already paying more of our own money to live our lives and access services and the community. But disability also costs society a lot of money, and unless we’re willing to kill all disabled people, those costs don’t go away. As a country, we can pay those costs through hospitals and the wider healthcare system, costly and inhumane institutions, or we can pass them onto individual unpaid carers - an option that still leaves isolated disabled people at high risk, and that takes more disabled people and carers out of the workforce and economic participation. Or we can fund services that allow disabled people and carers to work and participate in the wider economy, which then supports a healthy economy, as well as being individually better for both disabled and nondisabled people. The NDS was supposed to be an investment, and it’s already returning benefits to the economy. But this bill seems to only see it as an expense.

I would like to point out here that I have more issues with the bill in its current form that I’ve outlined here, but I don’t have the time or energy to get into all of them. I just want it noted that what I’ve written is not comprehensive, and I hope other submissions cover what I’ve missed.

I’m not just a burden on the budget, I’m also a valuable community member, and I deserve to have the supports I need to contribute to my community as best I can. And so do all disabled people.

Please don’t pass this bill.