National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 3075
I am an NDIS participant with permanent and lifelong disability due to an ultra rare degenerative genetic disease. My Sister is helping me write this.
I ask the Government to withdraw this Bill and engage in a proper discussion with disabled people to make them feel heard and understand that it isn’t this straightforward and that this Bill will cause just as much problems in other areas.
I am concerned that they will take away a lot of the power of the Administrative Appeals Tribunal and that participants will not be able to fully appeal choices that the NDIS makes. This wouldn’t give people a fair go if the NDIS made a mistake.
I am worried about the changes to assessments and that they are making it so that people will have to try treatments that they can not afford, or travel long distances for treatment, before you can be eligible for NDIS support. I already try everything I can and the money I get from NDIS helps me try things to help. Without the NDIS I would not be able to always afford the things that keep me from becoming more disabled.
The assessments need to properly take into account everything that might contribute to someone’s disability including their mental health and how and where they live. I am worried that the NDIS will not take into proper account what my specialists and Drs say about my disability. I have an ultra rare disability and there isn’t a lot known about it and how to treat it. My medical team stays up to date and tries a lot of things and are the experts on me as a whole. My disease means I have more than one disability. I have physical, neurological and neurodevelopmental disability as well as mental illness as a result of the disease. I am worried that the assessment won’t take into account all parts of my disability and health. Because they all connect together and for example my mental health getting worse can make my physical disability worse and vice versa.
Where I live a lot of health services have very long wait lists and some things I need aren’t available at all. When I wanted to get physio through the public hospital it was a two year wait. I need regular ongoing physio to maintain my mobility. I am worried that the changes to the NDIS will mean I won’t get funding for the vital private services I access and I will have to use public services, which have no capacity to help me when I need it. If I don’t get the services I need when I need them, then my disability will get worse and I will lose mobility. I would end up in a wheelchair and this would have to be paid for by NDIS as well as more support worker hours.
I am worried about the changes to assessments because one of my disabilities means I need help understanding and communicating. My support workers spend a lot of time with me and so they understand what I am trying to say and what I need help with. They help others to understand what I am trying to communicate, and they also help me understand what others are trying to say as well. I am worried that during the assessment I wouldn’t be able to have that support and then the assessment would be inaccurate and not understand what I need.
I am worried that the changes to eligibility and assessment mean that I won’t get the level of supports I need and that my family will have to step in to help more. My Mum has the same disease as me and my Dad is her full time carer. I am worried that I had less supporg and
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 3075
had to rely on him that Mum wouldn’t get the care that she needs and that Dad would burn out and not be able to do anything at all. I have the same worry about my Sister if she had to provide care to me because she has a lot of health issues and needs a lot of support herself.
I want the committee to know that the funding I get from the NDIS means that I live a good life and am able to do the things I need to do. Without the funding I would not be able to access the essential services I need to manage my disabilities from my disease and I would decline quicker and become worse and need even more support. I am worried that the changes mentioned in this Bill means that I would get less funding and support than I need and so I do not support this Bill.