National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 4222
My name is and I am a NDIS participant and I Secondary Progressive MS my disability is not stable is a degenerative condition.
It comes with it own complications I have worsening walking ability, worsening cognitive issues due to the nerves in my brain having more damage.
I wake up every single day in crippling pain in my lower legs in takes me an hour just to try and get moving and function properly and walk without screaming.
I now need a team of people and aids behind me. I need walking aids sticks and a walking frame.
I will eventually transition into a chair unfortunately I have had to face that reality.
The other essentially team I need is the multidisciplinary team my Neurologists, physiotherapists, occupational therapists and eventually continence therapist.
If I do not have these people in my life on a weekly basis my body will shut down I need the physiotherapists etc they are essential to my life.
Another essential part of my safety in my life is the support workers again I need people to come and cook for me and clean and then take me out and about.
I am not in a position where it is safe to do anything on my own I cannot cook anything for myself and I cannot be out on my own.
I have swallowing issues just recently I was out and I choked and my support person saved my life.
I want to be independent and these support people enable me to so just that they have saved my life.
Please do not take that away from me.