T
he conversation around proposed NDIS changes is dominated by a single message: reducing fraud and ensuring sustainability.
I agree that fraud must be eliminated. Every dollar stolen is taken from someone who genuinely needs it. But I worry that the public discussion has become so hyper-focused on budget cuts that we are blind to the risk of ridding legitimate participants of essential funding.
Before the NDIS, I funded my support privately and overnight, the dynamics of my closest relationships changed. My mum, my sister, and my friends became my carers. They stepped up incredibly, helping with personal care, transport, and daily tasks. We made it work because we had to, but it shifted the foundations of our bonds.
I write in my book:
My departure from Dalcross was imminent. My close family and friends, who had already invested so much in my recovery, definitely deserved some acknowledgement for the tiny progress I’d made. Having worked in neuro I knew that it was going to be a very slow recovery. My journey had only just begun, and I would still need them for a long time yet. How could I even begin to repay them for their efforts? They knew that I still had my marbles but I wanted to somehow show them that their support had been worthwhile.
Reinventing Emma, page 113
Then the NDIS arrived, and roles shifted back.
My friends went back to being just my friends, my mum just my mum and my sister was just my sister again. Instead of organising my life or doing my laundry, we could just meet for coffee and focus on being a family. For the first time in years, I felt less like a burden.
The NDIS gave me my independence.
The irony is that the community access supports some view as “extras” are exactly what make independence possible. Without support workers helping me engage with the world, my universe shrinks. My physical health, mental health, and confidence all suffer. Independence isn’t just sitting alone in a house; it’s the freedom to participate in society.
The thought of returning to informal support is frightening. Not because my loved ones don’t care, but because everyone’s lives have changed since back then. My friends have careers and families of their own to look after. My parents are getting older and less able to support me. The network that carried me twenty years ago cannot carry me today.
The NDIS was never designed to replace family and friendships. It was designed so people with a disability could live full lives without exhausting those closest to them.
When I hear discussions about slashing community participation, I don’t hear budget savings. I hear isolation, declining health, and the unfair shifting of responsibility back onto ageing parents and busy friends.
Fraud and waste must be addressed, but legitimate participants shouldn’t become collateral damage. The true measure of a society is how well it supports its people to live meaningful lives.
For me, the NDIS has never been about receiving care. It has been about reclaiming my life—and the prospect of losing that independence is something I never thought I’d have to fear again.