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 as an individual, as a Parent Advocate; as mother to my daughter who lives with disabilities caused from underlying rare genetic disorder. Also writing on behalf of my global charity that represents families impacted by ultra-rare syndromes.

Previously worked at Health & Social Policy Specialist role, in Senior Manager position within well-regarded consultancy firm. Spent eight years working across various roles including Graduate Director level positions. Commonwealth Department Of Health. The themes raised in regards to concerns about proposed amendments are:

• Changes regarding reassessments/reviews initiation.
• Increased NDIA standardised assessment/automation leading less reliance upon reports from allied health professionals.
• Ministerial overreach funding adjustments scheme-wide. Lack concrete information foundational supports creating anxiety among vulnerable individuals/families wondering if they will be part participants removed from Scheme. generally lack consideration/testing consultation how Amendments cater specific needs associated with underlying rare disorders. Until recently, would tell people unfamiliar NDIS our daughter was positive story Scheme. While know is case all participants certainly us without significant effort drowning requests incredible team reports heralded doing intended. she made onto the Scheme one-year-old under ‘global developmental delays’ Early Intervention Pathway navigated medical system leave Canberra get testing myself husband and daughter led diagnosis age three when born 2021 perfect according quick criteria used hospitals known APGAR score discharged little hours after she was born first week life noticed traits flags body visible birth those short hospital spent I am doctor what saw my daughter own non-clinical professional experience work before born running focus groups rare disease workforce advocates parents generously sharing lived experiences ultra-rare permanent multi-systemic condition diagnosed only through listening others space missed by test works most not for generalised medical professionals insufficiently trained skilled identifying syndromic flags markers If you two minutes her today functional capacity might measured high – can walk talk eat but missing six therapies supported weekly until point remains hope slightly close gap gene mutated won’t let happen entirely nature of her condition physical cognitive deficits working memory motor-planning makes highly susceptible losing progress quickly time appeal plan reduced allied health supports initiated December roll-overs continuations four year old 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 our own health literacy and advocacy skills nearly pages). However, we made strategic decision one shouldn’t have had make trade-off knew how much daughter needed more early intervention therapies despite writing submitting truthful compelling Carer Impact Statement cataloguing realities caring daughter chose explicitly state not requesting any carer support/worker funding because fortunate position being able barely without significant struggle manage care through family community supports Against backdrop rhetoric mainstream media Government’s commentary around sustainability scheme opted forgone support hope increase likelihood increased capacity building funding When outcome reviewed communicated us firmly told this increase in value likely single year only months time January after recently turned five those supports be no longer considered appropriate Now late May readying myself start process over again few months’ request updated reports snapshots justify ongoing needs With my professional background including papers authored about workforce Australia economics can overlay published evidence about daughter syndrome know categorically dollars invested her early interventions will lead savings system use/support across lifespan The Bill moves NDIS toward standardised rule-based decision-making But rare diseases often multi-system complex poorly understood – standardisation general assessments consistently fail cohort including daughter I like many others representing families touched by disease across Australia Rare Voices Australia their statement would Committee understand place flexibility Scheme efforts establish dedicated rare-disease pathway specialised team within NDIA so that with complex lifelong disability caused rare ultra-rare even undiagnosed conditions aren’t disadvantaged designed test cases it has already seen before Thank you for considering submission Regards Lauren Geatches GAICD.