Submission 2536
SUBMISSION 01/06/2026: National
Disability Insurance Scheme Amendment
(Securing the NDIS for Future
Generations) Bill 2026
I am writing this submission as a carer, who has no other informal supports, who’s mother and sister are both NDIS participants. This is a two page outline of our family’s context, our experience, and my personal opinion of this proposed bill.
My mother went undiagnosed with her intellectual disability for years. My father was a very smart man. He brought his wife and two daughters to live in this country and worked in Government for a few years before institutional barriers mean he was no longer getting new contracts and had to turn to driving a taxi for years. He was a university professor in his home country – this is a very typical migrant story from the 90s. He worked hard for years, 6 days a week, whatever job he could get.
2016, I think, was one of his happiest years, he paid off the family home. On a single salary, he raised a family of three girls in the Sydney suburbs, A year later, he was diagnosed with brain cancer and diagnosed within 3 months of diagnosis. He was 59. Months later, my youngest sister was wasting away, quite literally. She was a traumatic birth. She was non-verbal except a few words and lots of laughing, a quadriplegic, and from birth, she didn’t know any different. Her personality was like sunshine into our lives, she was always happy, headstrong, had everyone she knew wrapped around her little finger.
As the eldest daughter, I had moved out years ago. My youngest sister was born at Westmead Children’s in the early 2000s. After my father’s hospitalization, she became depressed, barely ate and stopped verbalising entirely. She was 13 when he died. If she had been in an institution, she would have quietly died.
I noticed neglect on my visits, my mother signing away her possessions, her home, to other family members. I fought for years afterwards to take custody of my baby sister, and then to have the family home put back into my mother’s name, to have her diagnosed and get her, her own NDIS supports, to keep my mother and sister together. I gave up my life, my savings, all of the savings my father had put aside, to bring them back to the family home that dad had paid off; this was for the long-term stability of my mother and my sister.
My sister is now thriving, my mother and her are together with my back in the family home, we have little but we have what we need. She is completely protected from the stress and uncertainty of her situation. I gave up my corporate career and am slowly doing my law degree at USyd so I can eventually give back and have my life back again. I volunteer weekly at the Aboriginal Legal Service.
Now I’m fighting with the NDIS, at the Administrative Review Tribunal for the 2nd time, to keep from putting my sister into a home with two strangers because they think it’ll be cheaper for the Government. After years of consistently being let down by large and small disability support providers, I have an amazing independent team of support workers that support her at home.
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Submission 2536
Financially, it would cost the Government far less, maybe 30% less, to keep her at home, because independent workers cost less and get paid more themselves, than using a institutional provider who would charge the max allowable rate that the Government sets. I also provide 10 hours of unpaid inactive care every night. In an institutional home, the Government would have to pay the full rates, overnight care, and accommodation costs. Split between three participants, it would still cost less to keep her at home. For such a vulnerable person, the loss in quality of life being put into a care home, would be exponential. The offset costs to the hospital and healthcare system would also add up over the years. People will disability will not just die quietly, the cost will be absorbed and ignored by the hospital system, local health districts, homelessness crisis centres, other social supports. This is a difference of millions just in my sister’s case.
And yet, because of the poor culture and internal KPIs of the NDIS, which neither party of this two-party system has done anything to address, we are here for the 2nd time. And despite the average $30 000 per case the NDIS pays in legal fees for an ART case, I think 2023 statistics, 80% of cases are favourable to the applicant. It is the same rinse and repeat war of attrition that NDIS solicitor employs whilst they get their fees paid regardless of the validity of the case. I won’t go into the excruciating detail of how awful and regular the negative impact of the NDIS’s decision-makers have been.
And of course, it would totally go against the Government agenda to discuss the positive impact to the GDP. Whatever economic model is used, it’s clear that for every dollar spent by the NDIS, this Government investment generate tens of billions in indirect economic value.
This new bill takes away all of the human rights language that are core to the act, it places precedence to the importance of financial costs rather than welfare, which reflects the stupidity of a political agenda not understanding that the cost will be offset with strain to systems elsewhere. It takes away and drastically reduces the rights of participants to review, as well as the court’s constitutional right of review to Government decisions, in an appropriately robust manner. There are executive rights in this proposed act that should properly be subject to parliamentary oversight rather than improperly being allowed as delegated legislation.
This, this is playing politics about who is deserving of taxpayer support and who is not. And who’ll be next in the firing line of this slippery slope once we run out of vulnerable populations to point the finger at? It wasn’t our indigenous population, or asylum seekers or our elderly, the same legislative tricks have been employed and challenged in other acts. Watching the poorly informed opinions and lack of interest of this Bill being discussed on the parliamentary floor is just another awful slap in the face to many of us.
It’s authoritarian, and open to constitutional challenge if it does get passed in a number of ways.
Its backsliding into a perceived fiscal conservatism that never existed. One of the reasons that Australia’s economy grew and remained strong in the 19th century and through the GFC, COVID, etc, is because of the strength of the welfare system and public services. Whether it was to protect farmers or the free university degrees for a vast majority of our politicians, or negative gearing. These may all be categorised differently but in the grand scheme, they are all protectionist policies.
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Submission 2536
I hope every committee member or politician has had a good hard think about what would happen if this happened to them. You, or someone you care about, are one car accident, one bad footy game, one random medical emergency or freak accident away, from becoming us.
I love this country and I am so grateful for the NDIS. But I have paid with my pound of flesh. And bad actors, bad policy, deserve to be called out. I give back where I can, I think that I’ve had a life-changing impact outside the little circle of my family. I hope there will be a pathway out, to undo this bill after it’s passed, before it has caused too much damage and death.
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