National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1291
What the NDIS means for me.
When I was diagnosed as Autistic and then later with various physical conditions it changed my life. I had answers for why I was struggling (aside from simply being ‘fat and lazy’) and learned ways to function and support myself (with assistance). Accessing NDIS supports immediately was part of my shift to a happier, more capable, healthier (both physically, emotionally and my general immune system and not getting sick constantly) and self- confident me.
I accessed psychology to understand my disability and how to communicate, a support worker to help manage daily life and tasks (no more burned dinners!), and supports to regulate my nervous system and build physical functional capacity so I wasn’t sick all the time and taking unpaid time off work. I had been paying for some of this out of pocket before, so having it covered and then being able to access additional supports really changed my life.
Most importantly, the supports meant I could sustain my full time job, and when I had previously thought of reducing my hours, realised that with the supports my functioning was at a level I could continue working full time.
5 years later I’ve also been able to take on more:
- I’m part of the NDIA Participant Reference Group where I provide essential lived experience
- Various other advocacy, advisory and education roles including the NT Government Disability Advisory Committee, the Board of Autism NT, helping with the Autism SA Autistic’s Guide to Adulthood review.
Working full time meant I was able to take on a mortgage by myself and build a house - contributing to the economy and supporting myself independently.
If I did not have these supports from the NDIS I wouldn’t be able to afford to continue them. This means I would have to reduce my working hours to part time – I have no informal supports that can help me. This would likely mean I can no longer afford my mortgage. This would be devastating for me and the effects on my self-confidence and wellbeing would be disastrous. I would probably need to move back home to my parents – as a 40 year old this feels unbelievable, but the rental market means I’d have no other option. At over 70 years old they don’t have the capacity to support me in the way that I need – they should be enjoying their retirement, not caring for me.
Whilst I completely understand the importance of the scheme being sustainable there has to be other ways:
- Fraud – and not the occasional participant mistakes – serious organised fraud and exploitation within the scheme
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1291
- Regulation of providers, but to an extent – there’s no reason why my cleaner who helps me 1 hour once a week for a low rate (as I’ve used her for a long time) needs to be regulated when I’m her only NDIS client. But anyone claiming more than a few hundred a week should be regulated.
- Crack down on the unethical behaviour from providers in Remote Indigenous communities
- Listen to experts when making and continuing participant plans – stop going to the tribunal (and losing), keep considering our specialist reports. An example is having more flexibility in funding, I shouldn’t need to pay for some of my therapies out of pocket for 2 months each year because I run out of money in one category, whilst my other category has too much. A smaller amount shared within the two would be more effective and save money.
- Crack down on price rorting. As a self-managed participant I never share that I am on the NDIS as if I do the price drastically increases for no reason.
- Redesign of SIL rental arrangements and support care arrangements. This is a significant issue that keeps coming up yet little appears to be done. And this is a huge expense where major savings can be made.
Permanence also scares me. A disability already means forever. I can’t treat my way out of this. But with the right individualised supports, look at what I can do. Please don’t take that away.
Especially when I live in a place like Darwin – a capital city that is nothing like one. I could not even obtain adult diagnoses for two of my conditions locally – we have so few services. I can’t even imagine what it is like for those further out or in remote communities. But there is nothing out there that will help me the way the NDIS does.
I am already constantly terrified that my mostly ‘invisible’ disabilities won’t be seen for their actual functional impact and I’ll lose funding. I already think about this constantly, week by week for nearly 5 years now. Every review time my anxiety spikes and every letter is a scary moment. I am terrified of losing my supports and what it would mean to my life. These changes to the Act have ramped up my anxiety enormously and I can’t help but fear Autistic people with less visible disabilities will be disproportionately affected by these changes.
Please don’t do this.