National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2426
Hello and good afternoon,
My name is I live in and I’m writing to you about the NDIS FutureGenerations Bill, which I oppose.
I am a disabled person who is on the NDIS. Before being on it I was struggling, constantly in pain, I felt like my body was rotting around me, like a zombie waiting to die from pain but never being released. There was no hope in me. I felt like a huge burden to my Mum, the person who never gave up on me even as she was aging and beginning to struggle herself as a single mother on a pension who is in her 70’s. She could not afford to help me financially but with her tireless work and support I was able to access the NDIS.
My life changed. It takes time to find people to work with who you can trust, but I’m lucky to have a wonderful team around me now. Instead of waiting to die I now can imagine a future for myself. Instead of being a burden to my mum, with my supports I am now able to see and help her myself once a week, which makes me feel like a person worth being around, a good kid. It is invaluable to me. Her health has been declining, and there’s nobody else who can help her, we can’t afford to pay for care, and I love her. She could not care for me again now.
My life feels worthwhile when I can give back and be engaged with my family and my community. Having support means that I have things I can offer my community, it means I could fix Mums sink recently, help her garden, it means I can make art and dance again, passions I had abandoned due to the nerve pain they caused. The idea of losing access to NDIS is terrifying. I’ll lose everything I’ve worked so hard to build over the last few years. I’ll lose it, knowing I didn’t have to, that I could have lived a life I was proud of.
I hurt for the disabled people trying to access the NDIS now and in the future, who can’t even imagine a better life for themselves. To know they could be rejected without hope for appeal is abhorrent and saddens every part of me.
There are many things which concern me about the proposed bill, another I want to discuss are the ability to choose independent unregistered support workers.
I have always chosen self employed support workers in my community. This is because I want a relationship with an individual I can build trust with enough to feel comfortable working with them. I have survived domestic violence and stalking and do not trust just anyone with my home, my body and my choices, especially when I’m at my most vulnerable.
I have never had an unregistered support worker cash for supports I did not receive, neither have any of my disabled friends I’ve spoken to. However, many have experienced being ripped off by larger registered organisations, billed for supports they never received. Registration doesn’t indicate trustworthiness at all. How do I build a trusting relationship with a big organisation of different workers which often use predatory billing structures?
It’s important to me to be able to choose to workers who have lived experience with disability and ideally also queerness, as I am a queer disabled person. This means I don’t have to stress about needing to explain myself more than I need to. It means experiencing warmth and having my needs better understood.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2426
The trust I have built with my unregistered support workers is not easily won and must be valued properly. They have all demonstrated genuine care and dedication to my wellbeing that has allowed me to experience stability and safety for the first time in my life. I can’t imagine how I’ll cope being robbed of that. I feel afraid.
There is already a shortage of kind, reliable support workers in our community. Too many burn out as is. The energy to find one alone is huge. Adding more barriers for independent support workers harms the disabled community. This harm is even worse for disabled people who lived regionally, as they have even less choice. Forced registration will harm disabled people, will lead to more fraudulent and expensive billing through larger organisations who can prey on our desperation, and will lead to worsening disabilities. Please help protect our community by listening when we tell you that we need independent unregistered support workers.
Ultimately, disabled people are best equipped to understand and communicate issues within the NDIS. If changes are necessary, we can help make those. The proposed changes in the new NDIS Future Generations Bill do not address the issues within the NDIS and in fact will cost us more, financially, in our communities, and during the election.
When disabled people are properly supported, when we aren’t fighting constantly to exist, we get the opportunity to offer so much to our communities and our families. The change from feeling like a burden to being able to help others is life changing. When we are properly supported, we share resources, make food, crochet clothes, spend time on the phone or over a coffee supporting people in our lives, we make art, we laugh and sing and be the bold, hilarious, wonderful people we all are. Many of my favourite comedians are disabled, I bet some of yours are too! We deserve to be seen, heard, and to have a chance to be active participants in our own lives. We deserve the chance to better the lives of those around us, instead of waiting to die feeling like a burden. I am only 33, I have a lot of life left, I don’t want to spend it begging to survive, I want to spend my life helping people.
Please, please, listen to us. Reject this Bill. We must protect the NDIS. We must protect disabled people.
Thank you for reading my words.
Kind regards,
.