National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 3344
My story - Sorry, it’s a bit of a read.
In 2015 my world came crashing down; a life that revolved around sport; a life that I took for granted; in a split second I suffered a devastating stroke! When I was initially struck, my arm simply flopped down along with my leg and I crawled from the bathroom, into the bedroom where my partner was sleeping. I tried to tell her what was wrong but I opened my mouth and said a whole lot of gobbledygook, a word salad. I knew what I wanted to say but the connection was broken …
My partner hauled me onto the bed and left to get help. I was flat on my back looking at the lamp shade above and thought this is it, I’m dying. I put my leg on the floor, I trusted it to take my weight but “THUD”, I was down again, collapsed like a pile of dirty laundry. I awoke on a gurney some six hours later, in excruciating pain through the length of my leg as though it was in spasm.
New York; the trip of a lifetime, or so I thought. Seven weeks in a Hospital bed in re-hab! I must have been seen as the most ungrateful patient around; I had to learn to talk again, I had to learn to walk again. They held up cards with words like BENCH and COMB, prompts for me to speak. I couldn’t stand alone. Basically I was a complete mess. I remember the day my partner brought in my mobile to take away the boredom, I looked her in the eye and said, “Honey, I don’t know how to work this?” To make matters worse I was taken off all medication, including my Dexamfetamine. I had been prescribed twelve per day since 2003. It was a nightmare I couldn’t wake from.
When eventually I arrived back in Australia I had to spend another 3 months in rehab. I was put back on my cocktail of meds but they no longer worked the same. When I tried to open my hand it would clench up and my fingers would dig into my palm, the reverse of what I’d instructed it to do. I had no tone in my arm, it just hung straight down, literally, no little bend in the elbow. Now I know the reason why dead bodies appear to flop around, their limbs have no muscle tone which normally would normally hold a skeleton together. After a year my arm started coming back to life. Now, I get some movement, I could , with a struggle, bend it at the elbow but my shoulder remains to this day, subluxed (partially out of it’s socket) and it doesn’t swing when I walk.
I put everything into my recovery. The first year I made noticeable progress, the second year I made some small gains but they said after two years you’ll have to live with it. I was right side dominant, the side affected by the stroke. To be able to drive I had to take lessons and pass the test again. I had to sell my beautiful car because it had a manual gearbox. The NDIS paid for the adaptions in a new car. I needed a left foot accelerator and a spinner knob with the indicators and wipers wired in. It had to be an automatic.
I have foot drop because my calf has gone to sleep. I cannot even jog. I support my right arm by holding it with my left, and my hand is still paralysed. When I bend over my arm stays vertical, still hanging. I was asked recently, “What bothers you most, is it the
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 3344
physical deficits or your mental health?“, I answered, “My mental health”. It’s your whole being, your personality, you can’t separate it like you can with a limb.
I was on the NDIS from 2015 - 2021 in Melbourne; my partner was my main carer. If it had not been for the support I was getting I would have ended it. I lived in the UK for 5 years, seeking the help of my family. They Council gave me a house there and I could choose a new vehicle for my Mobility (adapted of course). And they gave me enough money to be able to save. On the 31st of October 2025 I arrived back in Australia. I applied for the NDIS, but I got flat out REFUSED! I applied for an internal review; again they said no! Something about Functional Capacity …
I applied for a Disability Support Pension, and guess what, I got REFUSED that as well! Appeal still in pending, I have been here 9 months now.
All I have is Jobseeker allowance. I am rapidly going broke. I have to trudge to the shops, 25 minutes away, fill my backpack with shopping and yomp back to a bedroom I have rented for $300 a week, the cheapest I could find. Centrelink have a max of $250 for rental allowance. I spend my allowance in the first week. It’s meant to last for two. Nobody can survive on it but I understand it is to prevent you from starving while you looking for work. I had been employed/ self employed my entire life. I’m 56. I have never looked for work, not since I had the stroke. The GP said get yourself on Jobseeker to gets some income. I thought that silly, I’m not seeking a job, so I spent a while in no man’s land. The savings I brought with me were all being used up for accommodation. Expensive accommodation!
I’ve got no support in Perth, I don’t socialise. I have a head full of bad wiring. I’ve had 3 admissions to Psychiatric Hospitals prior to my stroke. I tried to commit suicide two Christmas’s ago. Life is a bed of roses! I’m starting to lose my sense of humour .. ! I read on Facebook, “Are you looking for a house but can’t afford it”. I opened the page just out of interest, then that evening I get a call, and as soon as I said, “I am disabled”, she said, “Oh sorry, they won’t deal anybody on a Centrelink Pension”.
What has happened? I used to brag to my English friends, Australia still uses some common sense, but now …. !
Thank goodness some people like you have the heart to speak up in our defence. I thank you for taking the time to read this, for letting me have my say, for making it easy for me.
Kind regards