National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 180

I have ME/CFS, dysautonomia, Osteogenesis Imperfecta and depression. I currently rely on the NDIS to be able to work and function in my home. I am one of the 56% of disabled Australians that work. I don’t have much of a choice in this as I don’t qualify for the DSP due to my partner’s income being ‘too high’ even though we would both be well under the poverty line if we were to both live off his income alone. He is also disabled. With my level of chronic fatigue, I have just enough energy to run my own business or maintain household chores but I can’t do both. I have support workers every 5 days which coincides with my second day off in my ‘3 days on, 2 days off’ timetable. I physically can’t work anymore than 3 days in a row without crashing and needing to sleep for the majority of the next few days. I also have funded gardening services and counselling each month. I am also about to move into a property which requires extensive wheelchair accessibility modifications.

I’m terrified that I may be one of the 160,000 people that are to be kicked off the scheme. Without these supports, it will threaten my ability to work and therefore earn an income which in turn threatens my ability to pay for my housing, medications, food, bills etc. I’ve been suicidal on and off for over 5 years and my counselling helps to manage this. My mental health is severely at risk should this be cut. My genetic degenerative bone condition has caused over 100 fractures and secondary joint issues and arthritis. It means that any lower body injury will have me in a wheelchair. I won’t be able to shower, toilet or move around my home without modifications. It will also endanger me and my partner further by attempting to do these things without them.

The new changes to the ‘permanence’ definition very much concerns me as 3 of my conditions are permanent and there are no known cures for them. This is extremely concerning that a governing body without any medical degrees can make a decision about the permanency of my conditions.

I don’t think there is much point in trying to appeal to an ethical or empathetic standpoint as these abhorrent changes would never have been suggested in the first place had there been consideration of one of the most vulnerable communities in this country. We have been telling you these cuts will kill us and 2 have already died. So I think it best to advocate from a financial perspective as this is the overarching reason why this is being done. You will not save money by cutting the NDIS. The needs will not disappear just because you have cut the support for them. What will happen is the working disabled, like myself, will no longer be able to work so that tax money will disappear; as will their support worker’s tax. When we don’t have the support to take our medications, eat, shower, be safe in our homes and communities, we will inevitably end up in the public health system taking up beds unnecessarily with neglect injuries which are far more costly to correct than it is to prevent them. The public health system will be overrun which will mean the rest of the population will be affected. Whilst you might believe this is easy saved money by denying support for the disabled community, however you will in fact be haemorrhaging money in the health system because of it, as well as the billions lost in tax revenue.