National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1357
Submission to the Senate Community Affairs Committee
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submitted by a person with lived experience of disability
I am someone who spent the first 30 years without support for my disability. At age 30 I was diagnosed with ASD Level 2 and applied for the NDIS. Since having a NDIS Plan I have been able to set life goals and NDIS goals. I cannot even begin to explain the difference the NDIS has made to my life. I still have a long way to go but I am really proud of my achievements over the last 2 years.
I was non achieving and non functioning. I had all manner of difficulties including processing, inability to maintain employment (despite my best efforts), difficulty with achieving anything, being a non starter, having relationship difficulties, not being able to communicate my wants and needs and massive social anxiety that was so enormous that I was a prisoner in my home.
The NDIS and a support coordinator who helped me face forward and set achievable goals now means that I am not stuck at home. And I am slowly turning this situation around. I know I have a long way to go but my goal is to be able to get and keep a job. With the NDIS and its supports – both CORE and CAPACITY BUILDING - this may be possible. I know I am always going to need support due to the nature of my life long, permanent disability, but I do believe that I can live some semblance of an “ordinary life” (whatever that is) in mainstream society. I only wish that I had got the support earlier before so many debilitating features became entrenched.
I am very worried about the notion that one has had to try every other treatment option. This component of the changes is frightening because it simply delays the intervention that is required. I do understand why changes need to occur but this particular part of the changes just sounds so broad and non specific…..I would like to see much more detail about how this change is meant to work before it is rushed through parliament.
I am also very concerned about the ICAN Assessment as one only needs to do some research to see that it is considered a terrible assessment tool that lacks accuracy across what a person can do. If this is the gold standard then we are all in deep shit. I present as being at a higher functional status than I actually am. Spend just a half an hour with me and you will see the difficulties that invade every part of my day.
I am also very concerned about the automation that is going to help decide plans and funding. I feel very angry that technology will be used when we are talking about real people, with names and stories. I deeply fear that I will be misunderstood and disadvantaged by the automated system. One only has to look at the automated failures in
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1357
the past and it is abundantly reasonable that people should be concerned about this new change.
I am very concerned about cuts to core support for community participation as I know that if not for support in this area I would be stuck at home. I already feel socially anxious and isolated and the possibility of me having my current supports cut really scares me.
I am also concerned about the possible changes to support coordination as I spent 30 years unable to co-ordinate shit. With the benefit of support coordination I am making progress because she effectively takes away the barriers that stand in my way of getting anything done. I feel so much focus has been on support coordinators who just take the money and don’t provide life changing services. It is so unfair because my experience has been very positive and it is wrong that every support coordinator is being tarnished by the one brush.
The same applies for those engaging in fraudulent activity. It is wrong to tarnish everyone with the same brush when most of us with genuine disability are doing the right thing.
As someone who is going to be targeted as possibly being removed from the NDIS I am deeply concerned that the progress I have finally made in the last two years will all be for naught and I will regress back to being non functioning.
I do not want to be on welfare. I have tried for 30 years trying to make a life for myself and have failed dismally Now that I am finally facing forward and making incremental program I will be devastated if I am kicked of the NDIS because I know that will spell the end of my aspirations to get myself a job and keep it.
Please note my concerns as this is truly a very anxiety causing time. I have no doubt that lives will be lost because of the anxiety NDIS participants are currently experiencing.
I am feeling very insecure and anxious about the NDIS and what these changes might bring.
I am a real person with 32 years of lived experience of disability. Please hear my words and concerns.