National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 3244
I am an NDIS participant with a very severe neurological degenerative disability. The complexity and far reaching pervasive nature of it means that I require a lot of support from both the medical profession and the more personal support given by individual supports.
I rely heavily on NDIS funding to maintain and continue my independence and autonomy. If this funding were to be decreased it would severely impact the quality of my existence. My family don’t live in the same city as I do, and I don’t rely on my busy friends who have their own families and care responsibilities to occupy them. I live alone and organise my own care.
The end result is that I am a high needs participant who has been watching the recent developments in the NDIS with interest. I feel that I should contribute to this relevant and important discussion about something that directly impacts me.
I am also predominantly non verbal and I have great difficulty with typing information in a timely manner. Writing this submission has taken some time and is only possible because my support workers are helping me. They are not writing this for me, they are helping me to write my own words. Please note this important point-they are transcribing not writing for me.
My own NDIS plan has recently come up for review so I have been in contact with the scheme planners. I tried to communicate my thoughts on my previous plan using a pre written speech app that requires the app to be running in order for the speech aspect to work. I took great care and spent a lot of time writing a speech that I wanted the planner to hear on the day of my information gathering meeting, but couldn’t play it as I could not figure out how to leave the online meeting to play my speech. The online meeting itself was of really low quality and I found it very challenging to hear. The planner asked me to email her my speech which was successfully delivered but as the personal information it contained went to the entire NDIS enquiries department, this only added to my feelings of being mismanaged by the very support agency that is supposed to exist to support me. I received a curt email from an NDIS enquiries person who thanked me for providing personal information but wanted to know what I wanted from them. I then received an email from the planner saying that she had received my email.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 3244
I had previously tried to contact the NDIS helpline but they wouldn’t answer my support worker when she asked for help to return the planner’s phone call because they couldn’t confirm that I was making the phone call despite me frantically trying to yell over the phone. The NDIS requires you to verbally confirm your identity over the phone, which I was not able to do because I am non-verbal. The phone call was not about personal matters at all, and they made a simple enquiry into a privacy issue. I had to write an email to the NDIS enquiries department to find out how to contact the planner.
I don’t have a lot of confidence in dealing with the NDIS, and it’s concerning that I may have to contact them more frequently in the future if my funding was to be arbitrarily decreased by a politician.
I would like to see some more accountability and easier access to the NDIS, for the people who cannot speak but don’t want to give consent to many other people to speak for them. Maybe a video call where participants can be seen would be useful? I would also like to register my deepest concerns about allowing those who do not know individual situations the power to affect NDIS plans.
Yours most respectfully, I hope this submission proves helpful.