To: The Committee Secretary
Inquiry: Senate Community Affairs Legislation Committee
National Disability Insurance Scheme Amendment (Securing the NDIS for
Future Generations) Bill 2026
From: Kylie Scott (with Evelyn Scott OAM)
Date: 8 July 2026
- About this JOINT submission Kylie has lived with disability (Down syndrome) for 46 years. We have been involved in advocacy for many years.
Kylie is now a Chief Investigator on a Western Sydney University NHMRC MRFF Oral Health
research project (Improving the Health Outcomes of People with Intellectual Disability), and is named as a co-researcher on two other WSU research funding applications. She is also a public speaker, a member of a variety of health and other ID related research committees, and an artist. (see www.kyliedownsbarriers.com.au)
Kylie and I are not opponents of reform. We accept that the NDIS must be sustainable, well-run, and protected from fraud. We write because we believe the way this Bill has been developed and several of its measures - put at risk the very people the Scheme exists to serve, and because our own experiences show that the people most affected have not genuinely been around the table.
- The summary of our recommendations
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That the Bill must not proceed until there is genuine co-design with people with
disability - especially including people with intellectual disability - who are remunerated and involved at a decision-making level. Genuine co-design must be undertaken, and the membership and terms of reference of any co-design process must be made public.
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That the Government must publish full, disaggregated modelling separating projected
fraud recovery from savings achieved by reducing existing participants’ supports and tightening eligibility, including anticipated cost-shifting onto health, income-support and state services - and that it set out a clear timeline for the fraud investigations it relies on.
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That no reduction to any funding stream commence until the replacement
(foundational) supports are funded, operational and independently evaluated in the relevant State or Territory.
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That the NDIA be required to produce a single, plain-language personal impact
statement for participants, and be required to notify participants individually of changes to their access or plan before those changes take effect, with accessibility requirements written into the legislation.
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That substantive decisions on eligibility and funding be set in primary legislation
subject to parliamentary scrutiny, rather than by ministerial instrument, and that expanded ministerial powers be constrained by transparency, review and appeal safeguards.
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That there be safeguards on automated or computer-assisted decision-making,
including human oversight and accessible review pathways.
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Consultation was not genuine co-design
We were told the changes followed extensive consultation with over 4,000 participants and families, but that ‘the breakdown of who was involved is not public’. Receiving submissions however many - is not the same as co-designing legislation with people with disability.
The evidentiary level of co-design is telling, we think. Kylie is the kind of person a genuine co design process would seek out: a participant with decades of lived experience who is also a researcher and a public speaker on intellectual disability. But she has never been approached. As someone who is engaged and visible, it is fair to ask how meaningfully people with intellectual disability were reached - and why the composition of any co-design body is being kept from the public.
Australia has obligations under Article 4.3 of the UN Convention on the Rights of Persons with Disabilities to actively involve people with disability, through their representative organisations, in developing the laws and policies that affect them. The Committee’s own extension of this inquiry acknowledges that engagement to date was not adequate.
See recommendation 1 above
- The fraud figures do not justify the cuts The case for these changes has been put forward as largely in terms of fraud. But the figures do not sit together as neatly as they are presented. A confirmed fraud figure of around $86 million is spoken of alongside ‘up to $6 billion’ in possible recoveries and some $3.6 billion in ‘integrity leakage’ - ie. overcharging and duplicated invoicing, not criminal fraud. Meanwhile, the Scheme’s own projected savings appear to come overwhelmingly from cutting the supports of existing participants and tightening eligibility, not from recovering fraud.
We strongly support pursuing genuine fraud. But fraud should be fixed on its own terms: it should not be the justification for reducing the supports of people who have done nothing wrong. We were given no timeframe for when these investigations will conclude - and, in the meantime, real people face reductions.
See recommendation 2 and recommendation 3 above
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Accessibility must mean personal impact, not a library of policy
We were directed to the Easy Read material on the NDIS Commission website. A great deal of work has clearly gone into it, and we are grateful for it. But it explains policy. It does not tell an individual the one thing they most need to know: ‘What is changing, and how will it affect MY access and MY plan?’
No person with intellectual disability can reasonably be expected to click through dozens of links to piece that together. Kylie would not think to look for any of it. Accessibility that leaves the person unable to understand the effect on their own life is not, in practice, accessible.
See recommendation 4 above
- Concentrated power, and the sequencing gap We share the concern - held across the Senate cross bench and the disability sector - about the amount of power the Bill would place in the hands of a single Minister to reduce whole categories of support, and about the expanded use of automated decision-making. Our deepest worry is one of sequencing: ie. reductions to social, civic and community-participation supports that are set to begin from October 2026, while the foundational supports meant to replace them are not expected to be operational until 2028. That gap will be borne by individuals and families.
We endorse the detailed technical case made by Australia’s Disability Representative Organisations and by the Australian Human Rights Commission on ministerial powers, automated decision-making, continuity of support and functional-capacity assessment, and ask the Committee to give those submissions full weight.
See recommendation 5 and recommendation 6 above
- What is at stake - in Kylie’s words Kylie is very aware she had the benefit of an early intervention research program for babies/young children in Melbourne when she was born in 1979. She knows, too, she had the benefit of parents - when the family moved to Canberra in 1981 - who lobbied and worked hard to increase access for families to early intervention, inclusion at local preschools and then their local primary and high schools.
Kylie remembers well, too, when her work attempts were short-lived due to no support or understanding; and eventually when she had to retire (in Sydney in 2013) from the public service on medical mental health grounds due to the lack of supportive understanding and the (now unacceptable) behaviour of some of her work colleagues.
With a long history of enjoying working hard and facing challenges - both through her schooling and when competing in Special Olympics swimming and tennis, for example - Kylie’s path through drama and speech training, once the NDIS came into being, led to opportunities to tell her story to the support and health sectors.
As Kylie says
‘I want to keep learning; I want to keep active and healthy; I want to be as independent as
I can be; I want to keep contributing. ‘I have had a full life thanks to wonderful support. I need to be able to confidently approach the challenges of ageing with the support I need.’
We thank the Committee for extending this inquiry, and for the opportunity to be heard.