Submission 2954 — Name Withheld — NDIS Future Generations Bill

Submission on the NDIS Amendment Bill

Name: ___________________________________

I am a:​ ☐ Disabled person​ ☐ Family member / supporter​ ☐ Clinician / researcher​ ☐ Advocate​ ☐ Other: ___________________

1. Introduction / my connection to this issue (Who you are and why you are submitting)

Hello, I am a soon to be 32 year old non-binary person who has lived with increasing disabilities throughout the course of my life. I am autistic and have ADHD. I have c-PTSD from an abusive upbringing that sought to beat those things out of me. I have had various mobility issues involving my lower back and pelvis, most notably being born with twisted hips that later turned into a severe left SIJ problem after a Dr mishandled my treatment. I had glandular fever when I was 21, not long after developing my left SIJ problem, and I developed Myalgic Encephalomyelitis (ME/CFS). Not long after my partner moved to Australia in 2018, I developed and was diagnosed with fibromyalgia. Without my partner’s support, I would not have been able to continue full-time work to support us. To this day, she struggles to find work and we have to rely on my body not falling apart and making me bedbound to survive. This has happened twice since I contracted COVID-19 in April 2022. I am someone that by all accounts of everyone that knows personally is a person that should be an NDIS participant as I am in dire need of support. This will only get worse when my partner becomes less available when she gets work. Despite my workplace’s “flexibile working policies”, I was effectively threatened to be fired for wanting to temporarily work from home 100% of the time due to a flare up in my ME/CFS. When I heard the news about the NDIS budget cuts and this Bill, I had a breakdown and a half. Being able to have the spare money to apply to the right specialists that NDIA wants, as their requirements are already strict and taken advantage of by many medical practitioners, is already a pipe dream currently. Now the Albanese Government seeks to further strip the NDIS and deny people like me who are drowning and relying on entirely community support and people volunteering their time to help. That is just speaking to my own selfish connection to this issue. I have quite a few friends and even more friendly acquaintances who receive NDIS supports that are still struggling with the supports they have. This is because they have to spend so much time fighting tooth and nail to navigate this system that is so inherently hostile to disabled people, rather than being a system built to ease the stressors on us that make it difficult to function without support. I have one friend that was denied an adjustment

to funding after multiple NDIS-certified OTs said they needed a feeding tube in order to assist recovery of their serious condition, and it was denied. This friend needs to exist in a completely dark and silent room and has been ‘subsisting’ off liquids for longer than any person should be allowed to. Practically every part of this Bill seeks to choke out participants and not actually punish the people exploiting the system for money - the providers who overcharge for goods and services by obscene amounts, and the NDIA itself for the millions it spends on lawyers yearly only to have around 80% of their decisions overturned in favour of the applicant (for new applications) or participant (for existing NDIS participants looking for funding alterations). This Bill comes after the NDIS requirements were already tightened up nonsensically by the previous Minister in charge too.

2. My overall position on this Bill ☐ I support it​ ☐ I do not support it​ ☐ I have serious concerns

I genuinely believe that anybody who supports this Bill is committing an inherent act of discrimination against disabled people. We have already had to fight so hard for the scraps we are given so we can be considered “useful” to society”. I believe this Bill exists for the purposes of kicking us further into the ground so we give up. As implied above, it has been public knowledge for years where the real money drain in NDIS is. It’s not disabled people’s fault that NDIA wants to salary their lawyers more than fund their participants, nor is it disabled people’s fault that the providers they are forced to go through with their funding money upcharge as much or more than ticket scalpers.

3. My key concerns 1.​ Increased administrative burden is a huge issue for disabled people and people on NDIS. There is already a glaring problem with overworked and/or undertrained Coordinators, Agencies and Support Workers and them not appropriately communicating administrative needs of the participants and often not in a timely manner either. So many of my friends and acquaintances have just had a SC drop something about a funding change that they heard nothing about, as if the decision was made for the disabled person without their consultation. Additionally, many disabled people struggle with various cognitive capacity issues that make the administrative red tape even more burdensome. Reducing timeframes for response and trying to stratify the process like disabled people are corporate worker drone project officers is not going to positively help disabled people at all. 2.​ The “not contactable” rule is concerning as wells for the reasons I have outlined above, but also for other reasons. A disabled person may not be able to advocate or communicate properly in the timeframe needed, and undertrained/overworked people who are supposed to communicate that the disabled person they’re supposed to be helping often aren’t doing that. Additionally, some people I know have lost supports, which have made it more difficult for them to communicate with NDIA when they have sent various demanding letters, which just feels like cruel punishment - “hey I know we just took away some supports and it’s probably affecting you poorly based on

your original application (or you’ve already told us it is), but we’re going to put you under even more stress.” It’s so contradictory. Additionally, this severely disadvantages disabled people without secure living situations, or those in unsafe living situations. 3.​ Restricting reassessment processes when they’re already so inaccessible is a terrible idea. Many of my friends have been holding off on applying for amendments they need because they’re already worried about losing funding because someone they know lost funding when they applied for a change that required more funding, not less. Often people are forced to undershoot what they’re applying for on NDIS in the first place because of how stringent the rules/process is already, so it really should not be surprising that in such a flawed system, many people are requesting for more funding once they finally jammed their hand in the door, often after dealing with abusive NDIA lawyers. 4.​ Limiting and restricting changes further inherently is contradictory to how the nature of some disabilities operate in the real world. 5.​ The provisions for allowing broader categories of supports rather than only individualised funding decisions is one of the most concerning things on the Bill. Grouping people by their disability, and worse, their ‘type’ of disability is very tone deaf to the variability of individuals’ experiences with disability and how different disability manifests. It would be like saying “everyone who is in a wheelchair must be quadreplegic or paraplegic, and no one else can be in a wheelchair, even amputees, people recovering from surgery, people with orthostatic intolerance, people with impaired walking, amputees etc”. Funding for groups of supports for any disability should never be treated with broad strokes. I really feel like I don’t need to explain much more as to why this is concerning, it should be very obvious to anyone who has heard more than one thing about disabled people. 6.​ Increased use of automated systems is already happening and clearly causing issues for applicants and participants of NDIS, which is probably a non-small amount of that burning hole of lawyer money that NDIA is creating. Increased use of automated systems is also a recipe for Robo-debt 2.0. I don’t really think I should have to say much more on this, because Robo-debt literally killed people. 7.​ Lack of human element is already a huge issue with dealing with people who work for NDIA. Because some things are already going through AI, and there are very few genuine humans who actually have lived experience as a disabled person working there. If the system was truly designed with the intent of disabled people, then there needs to be more focus on supporting people to work for NDIA, so there can be actual lived experience within the organisation and not whatever is going on right now. 8.​ Current changes that have been piloted or trialled in the last year have all been received very poorly and negatively affected practically everyone I know that is on the NDIS. The direction these “reforms” are going is not the correct direction. 9.​ Any changes that negatively impact children’s ability to get NDIS funding or to keep their supports and early interventions is always concerning. My youngest brother was diagnosed with what would be classed as “Level 2” Autism when he was 6 because he “acted out” a lot. If the NDIS existed in a robust form back then, perhaps my parents might have been more amicable to the idea of helping him rather than trying to beat it out of him. We grew up in a poor family, and while the physical violence had died down significantly, this was only due to my youngest brother beating other kids

in school because “that’s what mum and dad do when they’re upset”. Not exactly altruistic reasons, but I distinctly remember my mother complaining about essentially being forced to pay out of the pocket for a paediatrician to help “manage” my brother’s autism. The one session I recall attending in lieu of my mother when I was 17, I can safely say my brother was being exposed to ABA therapy. Had more acceptance and availability of support existed for people like my brother, perhaps he could have had a more stable adulthood where he was not completely dependent on our parents who viewed him as a mistake and burden.

4. My lived / professional experience I have mentioned a few observations in the last few points of lived experience from the perspective of people on the NDIS as well as my own, someone who is not on NDIS. One major thing I have observed in my life is that when my partner had employment and we were able to pay for me to see specialists to help manage my autism, ADHD, c-PTSD, and left SIJ problem, my quality of life was so much higher. Because I was getting the help I needed, because I could afford it. People on NDIS and I have a few things in common, and ordinarily being able to afford any form of assistance for our disability without extra help is one of them. We also didn’t choose to have any of our disabilities, and we’re treated like we did. My parents never did anything about my hips as a child, which is egregious when you consider my mother’s brother had a similar impediment and my father was a physio for a time. You would have thought maybe they would have worked with me to help me walk normally and not have to deal with the immense physical pain I do now. Within my workplace, a State Government workplace with supposed ‘flexible working policy’, my job performance plummets when I am forced well beyond my needs physically. Because when I am put under more pressure like that, it means I need more support, and I can’t get more support because I don’t have enough money, and I don’t have enough money partly because my health keeps crashing and I keep needing to take unpaid leave from work, but not for too long or we’d be homeless. The precarious state of my body makes it genuinely mentally hard to get through living, and I can only do it with the kind support of my loved ones (note - this does not include my blood family as I am estranged from them). It’s becoming increasingly difficult to live in this country that feels like it is trying to kill me slowly. This is probably echoing the lived experience of thousands of disabled people. We simply just want support to live humanely and without as much strife as we can, and we are just seen as an easy target and constantly attacked. Another bit of lived experience I want to speak to is the fact I lived on the Central Coast NSW (Robertson/Gosford) from December 2018 to June 2025. In this time, I saw so many disabled people in the community and so much more support for disabled people in terms of availability of providers, and of course Liesl Tesch AM being the State MP for Gosford, there was so much more visibility of disability in the area. There are certainly some issues still in that area as it has a long way to go in terms of accessibility in a number of ways, but that is exactly why I’m mentioning my experience of living in this area. Should the NDIS be put in a situation where it means their funding will be cut or restricted in certain ways, people

who are only really managing to get by how they are with their current funding will be so adversely affected, I can only imagine it would make some of the existing problems even worse there. That’s just speaking to one area of Australia that I would call a little ‘hub’ of having certain disabilities more visible than other areas.

5. What I believe this Bill gets wrong Pretty much everything.

6. What needs to change or be protected We need more scrutiny on NDIA and their decision making, and scrutiny on how they are spending their millions of legal dollars so brazenly, yet they don’t want to cough up, say, $2,000 for a power wheelchair. I’d wager most people on the NDIS would be able to live up to their true potential if the focus was more on properly QA-ing and auditing the legal and executive expenditure of NDIA and coming come harder on NDIS providers that disabled people are forced to use with their pennies of funding to buy items that you can get for sometimes 10% of the price at Kmart for similar usability! My weighted blanket I bought with my Oodie is half the price of anything I saw on NDIS provider websites at the time of buying is another example! The NDIS is nowhere near as robust as it should be. I genuinely hope the committee has the sense to see this after reading from lived experience of disabled people, loved ones of disabled people, professionals who work with disabled people, and everyone else who is clearly more informed about disabled people than Anthony Albanese and Mark Butler.

7. Final statement The proposed Bill genuinely feels like the start to accelerating a slow chokehold on disabled people. In the middle of something like long COVID becoming somewhat of a mass disablement crisis with consistent estimates of 10% of the global population likely being permanently disabled due to COVID-19 in some way, this is certainly not the way we should be treating disabled people and the supports around them. I ask, I urge, I implore the committee to consider my cobbled together lived experience, as well as the lived experience of everyone else’s submissions, when reviewing this Bill.