National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2890
My name is and I am a 62 year old woman living in Supported Residential Service in outer suburban Victoria. I was born with brain damage following complications at birth and my primary diagnosis is Intellectual Disability. I currently am very grateful for the good supports I receive from the NDIS, which have improved my quality of life a lot. I have no family living near me. My primary carer is my sister, , who lives 2 hours drive away. She asked me if I would like to tell my story for this submission and I agreed for her to write my thoughts here.
What does the NDIS mean for you right now?
Independence, support, help with the things I can’t do every day, freedom, connection
How do you feel about the proposed changes to the NDIS Act?
I feel fearful and upset. If the changes make disabled people poorer, lonelier and less visible… I don’t think that’s fair and is not the way the NDIS was meant to work. The proposed law is not easy to understand and I don’t think there has been genuine, accessible consultation for legislation that will significantly change how people access and use the NDIS. My sister says the proposed amendment document is more than 100 pages long and complex. People with disability like me deserve time to read, understand and tell our ideas about this law that includes major changes to how people access the NDIS and receive supports.
Do you feel these changes have been explained clearly enough?
No.
What would these changes mean for you, your family, friends, carers, or community?
I don’t really understand them but the way people are describing them to me, I am worried they might reduce the amount of daily supports I receive, put more pressure on my sister and family interstate to care for me and leave me without the things I need to live a healthy good life.
Without NDIS my life would be a total mess. I would be completely dependent on my family. I would be depressed.
What would happen if your social and community supports were reduced or removed?
I would miss going out. I would lose enjoyment, company, learning skills and to socialise with the community. These supports help me to go to church – without that my spirituality would not be supported and this is very important to me. I would not meet others of my faith and be able to practice my beliefs/religion.
I would go back to the way I was living before NDIS - loneliness, depression, suicidality, social isolation, loss of a life I have worked hard to build skills for: happiness, staying active and engaged, getting pleasure from my artwork, a sense of achievement and pride in how far I’ve come with the support of my family over the years and NDIS more recently.
Social and community support is how I leave the house, build confidence, practice skills, see friends, and stay connected to the world. Without this, I would not have these things that are vital for me to live a healthy and happy life. I would be in hospital more often and at risk of falls and lack of balance, and I would sleep all day because there is nothing else to do.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2890
If I lost personal care and allied health supports, I might need to move into a nursing home, which is not fair for someone my age who is young at heart and likes being around other people of my emotional age (my sister says this has been assessed as roughly 12-16 years of age).
What would happen if your capacity building supports were reduced or removed — or if you never had access to them in the first place?
I have a lot of trouble with balance, being overweight, incontinence, weak muscles (since birth), benign tremor and many other health issues that I struggle to manage alongside my intellectual disability. My capacity building supports help me to build the skills and confidence needed to achieve greater independence and stay healthy so I don’t end up in a nursing home or costing a lot of money by being in hospital all the time. I have got stronger and healthier with the support of my NDIS supports which I can’t do on my own because I have trouble understanding diet, exercise, nutrition and other ways to live a healthy life. I need support to help make things simple for me to understand and to support me to be motivated and able to make changes in my life. Thee supports also help me regulate my mood so I am not getting the CATT team called all the time and I am able to stay calm and happy.
One of the major changes proposed in this legislation relates to how the NDIA defines “permanence” in relation to disability.
Under these changes, participants could be expected to try all available treatments before being considered eligible for the NDIS. Importantly, treatments may still be considered “available” even if they are unaffordable or not available in your area.
There is no magic cure for intellectual disability. I will not one day just stop having this disability. I am on a pension with limited access to financial supports. I depend on the public health system. Long waiting lists and reduced access in my local area make many treatments unreliable and functionally unavailable. Mum and I tried everything when i was growing up to find a cure but I have to live with my life the way it is and I need NDIS to support me.
If I could talk to the minister i would say, “Don’t do it, consider us, that we have brain damage and it’s not our fault we’ve got it.”
Thanks for listening to my story