National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2379
Submission: National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
I am a 43-year-old woman living in regional South Australia. I acquired my physical disability 20 years ago and have lived experience with my psychosocial disability since I was 16 years old. I have been an NDIS participant for 7 years and providing NDIS support coordination for 3 years. The NDIS has improved my life immeasurably. When I first began receiving NDIS support, I was in constant physical pain, unable to leave my house, unable to undertake personal care activities, had people coming in to assist me with showering and other essentials, and heavily relied on my family to ‘care’ for me. I had no social support system, no educational qualifications and no career prospects. I had no hope for a different future than the hell I was living.
With NDIS supports, both core and capacity building, I have been able to get both physically and psychologically stronger, although I realise I will never NOT need these supports, my life is so different now from what I ever dreamed it could be. I was always in the powerless situation of needing people who loved me to physically, financially and emotionally care for me with no ability to do the same for them. Now, my relationships with my family are reciprocal, and while I still need them, I can offer things to them in the same way they can for me. I have supports in my home multiple times a week, so my 78-year-old mother no longer has to wash my laundry, shop for groceries, prepare my meals. My sisters don’t have to come to clean my house on the few occasions they visit my town, they can come and sit with me to have a cuppa instead.
I recognised early on in my NDIS journey that I wanted to understand my funding, and the scheme, so I could use it properly. I invested in a LOT of education, which then helped me to help other people with more cognitive and intellectual disabilities, and their carers, to understand their own plans and funding. Being able to get physically stronger reduced a lot of my physical pain, which in turn enabled me to be more active, and increased my mental capacity for learning. I’ve been able to achieve three Certificate IV level qualifications, I was selected to undertake in a Yale University leadership course, I’ve run numerous mental health education programs with grant funding, I am now a lived experience educator and regularly co-facilitate training for mental health professionals, I am a lived experience representative at local, state and national mental health consumer groups and I started my own business as a sole trader providing support coordination to a small number of NDIS participants.
None of this would be possible if I hadn’t had NDIS supports. None of this will be possible if my NDIS supports are taken away or reduced. Without regular input from my psychologist, physiotherapist and occupational therapist, my pain will slowly start to take control of my life again. I won’t have access to mobility aids that support my access to community, I won’t have access to daily supports that help me maintain my tenancy, I will stop eating regularly, I will not be able to be active every day, and simple things like doing my own laundry will once again become impossible. I will once again become a burden on my loved ones, and I won’t be able to attend activities with friends or even visit them. I won’t be able to continue working, either in my voluntary lived experience roles, or the paid support coordination role, and my world will grow infinitely smaller.
I live with the constant fear that all of the positive things I’ve been able to achieve will be taken away at each review. Now with this Bill, it’s become more evident that politicians do NOT think people with disability deserve ‘normal lives’. You don’t want us in community, you don’t want us in workplaces, you don’t want us taking a seat at the tables where decisions are made. You do not think we deserve to participate in life as you do.
My social and community participation funding pays for workers to attend social events with me that
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2379
I am otherwise unable to attend. They help me hear what other people are saying in crowded rooms so I can participate in the conversations. They help me find suitable transport so I can attend events at locations I wouldn’t be able to access. They help me feel less alone and less vulnerable. Yes, sometimes that involves helping me have fun at a bingo night, or a trivia night, but why shouldn’t I be able to attend these things? Why is it wrong that I need support to have fun?
I have self-managed my plan since the second year of my funding because in the beginning, the local plan manager here had no systems in place to pay invoices in a timely manner. I was losing services because their bills hadn’t been paid in months. I had to keep track of all the invoices, and chase when they were being paid, so I decided to do it myself, and I’ve been successfully self-managing for over 5 years now.
I once received an email from a large provider stating that my services would be ceased because my plan manager hadn’t paid an invoice from 18 months previous. I wasn’t even receiving services from this provider anymore, but they were threatening to send me to a debt collector. It turned out that there had been 18 months of the provider emailing the plan manager asking for the invoice to be paid, the plan manager was emailing back saying we don’t have the invoice, and no one had called the other to discuss the matter. I, as the person with the disability, was able to call both providers, work out the problem and have the invoice paid by the plan manager within 3 days of receiving that email. I fixed it, but it caused so much stress at the time, I was unable to leave the house for a week.
Another time, a provider was charging me at the level 2 price for core supports. I absolutely did not meet level 2 criteria, and when I challenged them, their answer was that they charged all their participants at the level 2 rate, and if I didn’t like that, I could change providers. My plan manager didn’t challenge this, or even notice the discrepancy, I did. I reported that provider for fraud, and was called by NDIA 8 months later, only to be told that they couldn’t do anything about it if I didn’t want to be identified. I had invoices that plainly indicated the provider was fraudulent, but the NDIA couldn’t – or wouldn’t – act.
These are just two of MANY examples over the years, as to why self-managing is a better option for me and provides better value for money for the NDIS. I regularly – at least monthly – have to correct providers regarding their invoices. A plan manager would not know if the wrong date, time or line item was being charged. I do.
Another reason I self-manage is because I can CHOOSE my supports. I was sexually assaulted by a support worker who was showering me. I reported this to their manager (after a long time of being continuously assaulted) and their manager told me I was at fault. Naturally, this has made me very reluctant to be showered by anyone. As a disabled person, unable to physically leave the space you’re being assaulted in, completely naked and reliant on this human who wants to hurt you, and being told it’s your own fault, how powerless could I be? So, I worked hard with a physiotherapist and occupational therapist, and I’m able to shower independently now, I just don’t have the physical strength to wash and dry my own hair. If I was plan managed, the only solution would be to still have someone shower me. Being self-managed, I can attend a hairdresser and have them wash my hair and dry it twice a week. I advocated hard after the NO LIST was introduced in October 2024, to have hair washing removed from the NO LIST, and it was.
What difference has it made being able to go to the hairdresser to have my hair washed twice a week instead of a support worker doing it? Let me explain. Firstly, I am in a salon, where there are other people for safety, and I’m not naked and vulnerable, at the mercy of whomever is showering me – sometimes providers would even send complete strangers, sometimes they would send men, but it turned out to be a female who assaulted me. Secondly, I have had to travel extensively for work. No
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2379
provider in small regional towns would let their support worker attend a hotel or caravan park to shower me without first doing a safety check of the space, which isn’t practical if I’m only in town for 4 days and need one hair wash. Thirdly, it helps me to feel confident and empowered to have my hair washed instead of being completely knotted, tangled and unmanageable. Without having my hair washed, I wouldn’t want to leave my house. Fourth, it saves the NDIS a LOT of money. One hair wash at the hairdresser costs $40-$60 and takes half an hour. The equivalent from a support worker would be at least three hours, approximately $200 depending on the day. Lastly, it’s physically safer – not just because it minimises chance of assault, but also because a hairdresser knows how to wash and dry hair, a support worker does not. Sometimes they wear gloves, which hurts so much, a lot of the time they don’t rinse the product out properly, they drag the brush through tangles trying to get the job done quicker instead of gentler, and they don’t care if they burn you – with the water, or the hairdryer. Self-management gives me freedom to adapt my services to my life.
The previous changes to the My Aged Care assessments, and the ‘Robodebt’ debacle should indicate how absurd it is for the government to make these changes – but to make them unappealable is disgusting behaviour. It’s giving one person – of whatever party happens to be elected – the power to change people’s lives without being challenged. Twelve people can’t even convict a murderer without giving them the chance to appeal the decision, yet you want to give ONE person the power to take away all of my supports, change my life irrevocably, and not provide me with the option to appeal that decision? Make it make sense.
In my state, there is a media ban preventing the reporting of suicides because of the impact on community and other people with mental ill health. Why isn’t there a national media ban on the ridiculous reporting about the NDIS? A lot of people would look at my life now and say I don’t need the NDIS. When I break it down for them, they can see how I use my supports to create a positive, impactful life. These are the stories the media AND you politicians need to hear and share. Our lives cannot be captured or assessed by automated programs, and a one size fits all functional capacity assessment isn’t appropriate for so many types of disability. How can one test override years of reports from medical and allied health professionals?
Yes, there is fraud, and sometimes people are receiving unsafe supports, but these changes will do NOTHING to change that. It will make lives unsafe, even just by the examples I’ve provided here. Give the Safety & Quality Commission some teeth to go after fraudulent providers properly, punish the providers profiting from disabled people, don’t punish the disabled people themselves. The Disability Royal Commission asked us to bare our souls with the aim of improving lives for disabled folks, I don’t think the 222 recommendations included removing our supports or holding that threat over us by empowering one individual to make that decision without appeal. No one wants the NDIS to be more sustainable than disabled folks, but attacking us and removing our supports is not the solution, it’s perpetuating further abuse onto vulnerable people and sending us back into the literal dark ages, where we are housebound, where our carers have no lives because they’re caring for us, where we aren’t seen or heard, we’re hidden away to suffer in silence. The NDIS held great promise for our country and was a beacon for other western countries to follow. Please don’t destroy that for your own political gains.