National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 1409

My name is Lauren, and I am one of the 2025–2027 Ambassadors for Rare Voices Australia, the peak body for Australians living with rare conditions. I do not write to you in this capacity; I write to you in a personal capacity, as a Parent-Advocate; as the mother to 4-and-a-half-year-old daughter who lives with disabilities caused by an underlying rare genetic condition. I also write to you as the Founder of a global charity that represents families impacted by her ultra-rare syndrome.

I have previously worked as health and social policy specialist, Senior Manager of a well-regarded consultancy, and spent eight years in the Commonwealth Department of Health in various roles, spanning Graduate to Director.

The themes of the Amendment that I would like to raise concern with, through our family story, are as follows:

• changes to plan reassessments and reviews, including initiation of reviews
• increased NDIA standardised assessment and automation, with less reliance on individualised reports from allied health therapists and other professionals, and less individualised (human) assessment by NDIA staff
• ministerial overreach with funding adjustments at a scheme-wide level
• lack of concrete information about foundational supports, creating angst for thousands of vulnerable individuals and families who now wonder if they will be part of the 160,000 participants removed from the scheme.
• generally, the lack of consideration/testing/consultation on how the Amendments will cater to disabilities caused by underlying rare conditions.

Until this year, I’d tell people who may not have had a touchpoint with the NDIS that our daughter was a positive story of the Scheme. While I know this is not the case for all participants, and certainly for us not without significant effort and drowning in the reports we request from her incredible team, we heralded the scheme for doing what it intended.

She made it onto the scheme at one-year-old under ‘global developmental delays’ on the Early Intervention Pathway. We had to navigate the medical system and leave Canberra to get the genetic testing of myself and my husband and daughter, that led to her concrete diagnosis at age three.

When she was born in 2021, she was perfect, according to the quick standardised criteria assessment at birth used by hospitals, known as the APGAR score. We were discharged a little over 12 hours after she was born.

In her first week of life, I noticed traits and flags in her body – all of which were visible at birth and for those short hours we spent in hospital.

I am not a doctor; what I saw in my daughter was from my own non-clinical professional experience, from my work life before she was born, running focus groups with rare disease workforce, advocates and parents, generously sharing their lived experience.

The ultra-rare, permanent, multi-systemic condition she was diagnosed with was visible to me, only through listening to others in the rare disease space but missed by a standardised test that works for most, but not for all. It was also missed by generalised medical professionals, who were not sufficiently trained or skilled in identifying syndromic flags and markers.

If you spent two minutes with her today, her functional capacity might be, very bluntly, measured as high – she can walk, talk, eat – but that would be missing the six allied health therapies that have supported her, weekly, until this point, and the significant developmental gap that remains. We have hope to slightly close that gap, but the gene that has mutated won’t let that happen entirely.

And the nature of her condition, which is both physical and cognitive, including deficits in working memory and motor-planning, makes her highly susceptible to losing progress, quickly. Even in the time it would take for us to appeal a plan with reduced allied health supports.

We initiated a plan review in December 2025, after successive roll-overs/continuations of her plan – leaving her with the same supports for a four-year-old with a permanent, genetic neurodevelopmental syndrome

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 1409

(including intellectual disability and a list of physical challenges) that were originally set for a 14-month-old with global developmental delays.

Our plan review was “successful”, as we received all the expanded allied health hours/supports and low-cost AT budget we requested, due to the enormous amount of evidence we were able to gather, and the way we were able to build the (strong) case, leveraging my own health literacy and advocacy skills (nearly 90 pages).

However, we made a ‘strategic’ decision (one we shouldn’t have had to make) – a trade-off. We knew how much our daughter needed more early intervention therapies, so, despite writing and submitting a truthful and compelling Carer Impact Statement cataloguing the realities of caring for our daughter, we chose to explicitly state that we were not requesting any carer support/support worker funding because we are in the fortunate position of being able to (barely and not without significant struggle) manage care through our own family and community supports. Against the backdrop of rhetoric in the mainstream media, and the Government’s own commentary around the sustainability of the Scheme, we opted to forgo that support, to hopefully increase our likelihood of increased capacity building funding.

When the outcome of our review was communicated to us, we were firmly told that this increase in plan value would likely be for a single year only, and that in 12 months’ time (January 2026), after she has recently turned five, those supports would be “no longer considered appropriate.” Now, in late May 2026, I am readying myself to start the process all over again in a few months’ time – requesting updated reports and snapshots, to justify her ongoing needs.

With my own professional background (including the papers I have authored around health workforce in Australia, and health economics), I can overlay the published evidence about my daughter’s syndrome, and I know, categorically, that the dollars invested in her early intervention therapies will lead to savings in health and social system use/supports across her lifespan.

The Bill moves the NDIS toward more standardised, rule-based decision-making. But rare diseases are often multi-system, complex, and poorly understood – standardisation and generalised assessments consistently fail this cohort, including my daughter.

I, like many others representing families touched by rare disease across Australia, including Rare Voices Australia in their own statement, would like to compel the Committee to understand that there must be a place for flexibility within the Scheme, and efforts to establish a dedicated rare-disease pathway, or a specialised team within the NDIA – so that families with complex, lifelong disability caused by rare, ultra-rare and even undiagnosed conditions aren’t disadvantaged by a system designed for test cases it has already seen before.

Thank you for considering my submission.

Regards,

Lauren Geatches GAICD.