National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
\Submission 4222
My name is redacted and I am an NDIS participant with Secondary Progressive MS; my disability is not stable, but rather a degenerative condition.
it comes with its own complications: worsening walking ability, worsened cognitive issues due to nerves in my brain having more damage.
i wake up every single day experiencing crippling pain in my lower legs—it takes me an hour simply to try and get moving, function properly, and walk without screaming.
i now need a team of people and aids behind me. i require walking sticks and a walking frame.
i will eventually transition into a chair – unfortunately, this reality has had to face me.
the other essential team i need consists of neurologists, physiotherapists, occupational therapists, and ultimately a continence therapist.
if i don’t have these individuals supporting me weekly, my body will shut down - i need those physiotherapist services as they are vital to my life.
another crucial aspect of maintaining safety involves support workers again —i need assistance cooking meals, cleaning, and taking me out.
i cannot be safe doing anything on my own or preparing food for myself nor can i go anywhere alone.
i recently experienced swallowing difficulties when choking while outside requiring that someone save my life.
i want independence which the current supports enable; it is because they saved my life.
Please do not take that away from me.