Submission 823
Submission to the Senate Community Affairs Legislation Committee
Inquiry into the National Disability Insurance Scheme Amendment (Securing the
NDIS for Future Generations) Bill 2026
Submitted by: A parent, on behalf of her son
The following submission is presented in the form of an interview conducted with a 35 year-old man with cerebral palsy, an intellectual disability, and autism level three amongst other disabilities. He has been an NDIS participant since the scheme rolled out in his area of Victoria in 2018. Due to the nature of his disabilities, including significantly affected speech and communication, this interview was conducted with the support of his mother, who assisted him to express his responses. The words recorded here are his own. They have not been paraphrased or interpreted. They have been transcribed as he said them.
He was informed of the purpose of this submission and agreed to participate. He understood that his responses would be provided to the Senate Committee. He chose not to have his name recorded.
Hello what’s your name?
I don’t want to say my name. Do they need to know my name?
How old are you?
I’m 35
Who is your family?
My mummy and me.
Can you tell me some things that are hard for you because of your disabilities?
I cannot walk properly. I don’t have good balance. I can fall over easily.
I cannot talk properly. People can’t understand me.
I have problems with my bladder. I can’t feel it. I have to be reminded to go to the toilet.
I have problems swallowing, heaps of trouble. I choke a lot.
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Submission 823
I have to be gluten-free.
What is your disabilities
I have cerebral palsy and Autism and in intellectual disability.
What kind of help do you need every day?
A lot of help.
What kind of things do you need help with?
Like, um …everything
I can’t dress myself
I can’t shower by myself, or I will fall over which has happened before and it hurt a lot.
I can’t wash myself. I can’t dry myself. I can’t dress myself. I can’t put my shoes on.I can’t do up buttons or laces.
I can’t cook. I can’t prepare my food. I can’t do my own shopping.I would like to do all of these things but I cannot do it on my own, I need help.
How does the NDIS help you?
It is helping me.
It got me a new wheelchair so that I can go long distances with help
It helped me get AFOs and orthotics to help me walk and balance.
The NDIS is helping me go to an arts program two days a week where I am learning to sew and make things that I want to sell one day.
The NDIS helps me go out into the city; I love the city. I go to places like science works and the museum.
NDIS has helped me get speech therapy and physiotherapy.
Why is speech and physiotherapy important for you?
Because I really, really need them because without them I can hardly do anything.
Speech therapy helps me to actually talk.
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Submission 823
It has helped other people understand me a lot better.
What happens when you lose a therapist like a speech therapist and you need a new one?
It takes ages to find a new one.
It affects my speech heaps. People find it hard to understand me as easily. It makes me feel alone when people don’t understand me.
What about physio?
It helps me to stand up. That’s a start.
It helps me to sit up.
It helps me to walk.
Helps me to balance and not fall over as much.
What happens if you lose your physio, speech therapy or clinical psychologist?
I would not be able to talk.
I would not be able to walk.
I would not be able to think as good as I do now.
If you lost the support you have from NDIS how will that affect you?
Like a lot. I think I will start losing my abilities?
What if you don’t have support workers?
I won’t be able to do anything and I will be alone. I don’t want to talk about it.
What happens if you are alone for a long time?
I feel upset and angry if I am alone for a long time.
If you are alone all the time and you won’t have support workers?
Very upset and angry
What would happen if you lost your arts program and you were no longer able to learn to sew?
I think I would be very, very, very upset because it makes me feel good about myself.
If I lose it, I would get upset and be sad.
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Submission 823
Your mum can’t take care of you well because she has a permanent injury – what would happen if you did not have support workers? Who would get you ready?
I would just be a body on the floor not doing anything.
No one could shower me. So, I would not have a shower.
No one could dress me. So, I would not be dressed.
No one could cook my food.
Is there anyone else to help you other than your mum and your support workers?
No
So, I would not have help.
How do you feel about the proposed changes to the NDIS?
Not very good.
I am worried about them.
I am angry.
I am upset.
Is there anything you would like to say to the government about the proposed changes to the NDIS?
Like, what do you mean?
Well, if you were talking directly to the Prime Minister, Mark Butler, Jim Chalmers what would you like them to know?
This is not a good idea.
It is not fair to do this to me.
How do you feel about having to have reassessments?
Not very good.
Why?
I don’t like having to prove that I am disabled, when I am disabled. They know I am disabled.
The people who assessed me made me feel like an object
Pointing out negative things about me
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Submission 823
What will your life look like if they take some or all of the NDIS away from you?
Not a very good life at all
I have been very worried about this
I wish I was not disabled
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