National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1154 - Supplementary Submission
In addition to my submission I’d like to add a personal note re the diƯerence my funding has made to me just over the past week.
Background
I have secondary progressive multiple sclerosis. Multiple Sclerosis (MS) is neurological disease aƯecting the brain, spinal cord and nerves, symptoms vary depending what parts of the brain and nervous system are damaged. There are diƯerent types and stages of MS. I lived with primary progressive MS for 30 years without support. During that time I was working, running a business and raising a family with increasing diƯiculties. This type of MS doesn’t have the more common relapses and remission, just slow steady decline in level of function. There is no cure, only treatments to try to slow progression. Now at the secondary progression stage there is no medication to help me. My disease and level of disability will steadily get worse. My physiotherapist and other allied health professionals are the only ones who can help to slow this progression.
One Week
Last week: I was really struggling to get my body moving, each morning I’d spend hours going through all the exercises with little success. I was exhausted and in a lot of pain (MS causes nerve pain and altered sensations). Only on the couple of days that I saw my physiotherapist was I able to function. After physiotherapy I had a few hours where I was able to go out for essential food and prescriptions. I was able to prepare meals to last for several days. I was able to do a few necessary tasks.
I usually have limited functional time each day, I plan other appointments or tasks after my physiotherapy appointments as I know that is when I will be at my best. Last week those physiotherapy appointments were all that kept me going.
I do not know how I would have coped without my physiotherapist.
I would have needed daily support workers, but I live in a regional area, There are not enough support workers and to get them at short notice is virtually impossible. I would have had no independence and my quality of life diminished. My husband was ill on top of 2 serious long term medical conditions. How would we have got through that week let alone the next and the next.
The thought of the Capacity Building funding for physiotherapy and other allied health being cut is devastating.
Then I would be relying on support workers but there wouldn’t be suƯicient funding for them either.
There are so many people like me. The NDIS funding and the supports that it provides is our lifeline. With it we aim to maintain a level of function, independence and the capacity to look after ourselves. To have a life.