Submission 2152
Submission to the National Disability Insurance Scheme Amendment (Securing the NDS for Future Generations) Bill 2026
Attention: Committee Secretary, Senate Standing Committee on Community Affairs
Submitted by email: community.affairs.sen@aph.gov.au
Date: 1 June 2026
I welcome the opportunity to make a submission to the Senate Standing Committee
on Community Affairs about the National Disability Insurance Scheme Amendment
(Securing the NDIS for Future Generations) Bill 2026.
I am a human rights law expert, writer and disability advocate. Among a range of
roles I hold inside and outside the disability sector, I chair the Justice and Equity
Centre’s NDIS systemic advocacy working group, which is made up of disability
organisations from around Australia. I was lucky enough for my correspondence to
be published in response to the 2023 Quarterly Essay ‘Lifeboat’ by Micheline Lee
and am the host of the recent podcast Building Inclusion: Australia’s disability
strategy, funded by the Department of Health.
I am also a person with a disability and a parent of a child who is a NDIS participant.
I want to outline the harm this Amendment Bill will cause if it passes Parliament. I
strongly believe the Bill, as it stands, is a retrograde measure that will entrench
violence, abuse, neglect and exploitation of people with disability. The Bill requires
further scrutiny and amendment before it proceeds.
Background
My own journey growing up with a disability in regional Victoria was detailed in my
2023 memoir Broke (Affirm Press).
Had the NDS existed when I was a child, my trajectory would have been
significantly different. It’s likely I would have required less surgical intervention, had
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greater supports and adjustments within my household, education and potential
employment, and would be physically and mentally healthier as an adult.
When my daughter was diagnosed with the same condition I have, I knew that we
could provide easier pathways for her to live a fulfilling life, due in no small part to the
NDIS.
I’d watched as then Prime Minister Julia Gillard stood in Parliament and promised
that the only solution to the previous inadequate and indefensible patchwork
supports was “a nation-wide, demand-driven system of care tailored to the needs of
each individual and established on a durable, long-term basis“.
Prime Minister Gillard said the original Bill “clearly recognises the right of people with
disability to exercise choice and control over the planning and delivery of their
supports“.
It genuinely was nothing about us, without us.
However, the process of proving eligibility and then wading through the bureaucracy
to get what should be fairly simple physical adjustments has been nothing short of
soul destroying.
Rather than looking at providing people with disability with, in Prime Minister Gillard’s
words, “what is necessary to achieve their goals and aspirations and take part in the
community, in keeping with what it is reasonable to expect a scheme to provide“, the
Scheme is consumed by a deficit model.
I’ve lost count of the times we’ve received a medical report that starts with a
sentence like “sorry that the language can be so confronting”.
My daughter’s diagnosis is not a complex one. Like me, she has
pseudoachondroplasia, a form of dwarfism that significantly impacts the growth of
her bones and the health of her joints.
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But the constant requirements to prove she is disabled enough and disabled for life has highlighted where some of the real inefficiencies lie within the system.
Since being approved for NDIS funding, about 30 per cent of our funding has gone towards a social support therapist. This has been a godsend.
Perhaps necessarily, we’ve spent about 17 per cent on initial meetings with providers.
However, over half of my daughter’s budget has been spent on reports proving that her disability is a permanent and significant – something that was already done by doctors at Melbourne’s Royal Children’s Hospital long before we applied for the NDIS. A diagnosis of dwarfism does not go away, yet we constantly have to prove that fact.
And most frustratingly for a physical disability, not a single physical adjustment has yet been made.
We have a quote sitting there for adjustments to our household infrastructure that would allow her to access supports that are critical to her dignity and respect.
We know that every dollar counts, and when we saw that the quote was for more adjustments than we needed, we took what we thought was the responsible measure of requesting that the quote be changed, only to be charged again for getting another quote.
And we are now going through the process of getting further reports to prove the permanent and significant nature of our daughter’s disability, just to get these reasonable and necessary physical adjustments.
Meanwhile, my daughter cannot independently access really basic facilities that most 6-year-olds take for granted.
Submission 2152
I share these experiences, not to rant about the scheme, but to highlight that
inefficiencies in the system do exist.
However, it’s not that there are too many people on the scheme, or that we’re asking for unreasonable supports, but that people with disability are not being listened to.
We spend too much time, money and emotional energy just trying to prove our deficit, then just when we think we’re getting somewhere, we’re presented with more barriers.
And now, with this Bill, people with disability are told that we’re going to have to prove, again, that we’re disabled enough.
My daughter is the most wonderful human being. She is inquisitive, kind, artistic and full of surprises. But her future, and the future of hundreds of thousands of others, is being put at risk by this Bill.
It is from this basis that I make the following recommendations.
Parliamentary Scrutiny and Transparency
The consultation period for the Amendment Bill is two weeks, which is insufficient to allow for appropriate consultation, considering accessibility and communication needs. The Australian Government Guide to Policy Impact Analysis says consultation should occur for a minimum of 30 days where possible.
The disability community is, quite rightly, extremely nervous and worried about the changes. With a two week period, many simply do not have enough time to properly convey how the cuts will impact them.
Recommendation: Amend the consultation period for a best practice minimum of 30 days.
Key decisions left to ministerial instruments, not law
The issue: The Bill allows Ministers to change who gets NDIS support (Schedule 1 Parts 8 and 9) and how much funding people receive (Schedule 1 Part 4; Schedule 3) by signing an instrument, without going back to Parliament. The rules that will determine critical eligibility thresholds (Schedule 1 Parts 1, 8 and 9) have not yet been written.
How this affects participants: The decisions that shape the lives of participants, whether they qualify for the NDIS and what supports they can access, could be changed without parliamentary debate or public scrutiny. Participants may not know supports or eligibility rules have changed until their plan is affected.
In our situation, we could be halfway through the process of getting physical adjustments, or about to make a breakthrough in social interactions through therapy and suddenly find out there is no more funding. This is not the lifelong support we need.
Recommendation: Require that all decisions affecting NDIS eligibility and funding levels be made through primary legislation subject to full parliamentary scrutiny, with mandatory advance notice to affected participants before any changes take effect.
Existing participants face narrower criteria and fewer rights to challenge decisions
The issue: The Bill changes the rules for existing NDIS participants and makes it harder to challenge some decisions about supports and funding. It also restricts when you can request a reassessment, removes review rights for automatic plan renewals, and makes funding reductions unreviewable (Schedule 1 Parts 1 and 8). Combined with restrictions on reassessment requests (Part 2), automatic plan renewals without review rights (Part 5), and unreviewable funding reductions (Part 4), existing participants face narrower criteria with significantly fewer avenues to challenge decisions about their supports.
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How this affects participants:
This does not protect participants already on the
NDIS, who could be reassessed under stricter rules. If someone’s funding is reduced or their plan renewed automatically, they may have limited or no ability to challenge that decision. This could make it harder for people to get extra support when their circumstances or disability change.
In our case, we seem to be at the whim of medical professionals, most of whom have little knowledge about our condition, which impacts about 1 in every 100,000 people. If a decision was based on an ill-informed medical report, this would be harder to challenge.
Recommendation:
Require a “no harm” safeguard ensuring no current participant loses access to supports unless equivalent supports are in place, with independent review rights before any exit decision and access to unscheduled reassessments preserved.
Unreviewable ministerial power to cut funding across all support categories
The Minister can reduce funding for any support or group of supports by a specified percentage through an instrument that cannot be challenged (Schedule 1 Part 4).
This applies across all budget categories. Unspent funds will no longer carry over at plan renewal (Schedule 1 Part 5).
How this affects participants:
A participant’s community participation, capacity building or assistive technology funding could be cut without warning and without any right to appeal. Participants who save unspent funds across plan periods for high-cost items will lose that ability entirely.
In our situation, the supports that can make transformational difference are largely about community participation and day-to-day infrastructure. This means that spending can differ significantly from funding period to funding period. Not being able to carry over funds will mean some essential items could go unfunded.
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An unintended consequence could be that some participants may spend more at the
e end of funding periods on items that are not top priorities just so they can make the
most of budgets.
Recommendation: Require that unspent funds carry over at plan renewal for
participants saving for high-cost items and require independent review rights before
any funding reduction takes effect.
Requirement to exhaust treatment options before eligibility
The issue: A person with disability will need to exhaust treatment options before they
can be eligible for the Scheme (Schedule 1 Part 8). There will also be a removal of
whole-of-person assessment, replaced by single eligible impairment consideration
(Schedule 1 Part 3). The note that previously acknowledged environmental factors
and other ineligible impairments could affect support needs will be removed
(Schedule 1 Part 3).
How this affects participants: People with disability will need to prove their
impairment cannot be treated before they access the NDIS. Once in the scheme, their supports will only be assessed against a single eligible impairment rather than their whole experience. A person’s individual circumstances will not be considered, including ability to pay for treatment, where they live or whether treatment is actually available to them.
For us, this is just more bureaucratic burden to prove an obviously permanent disability is, in fact, permanent. There are no “treatment options”, unless you argue that expensive and painful surgery, which addresses symptoms but is not a “cure”, is such an option.
This will require more spending on more reports, with money that could have gone to actual supports.
Recommendation: Do not proceed with a requirement to exhaust “appropriate treatment” options – there are no safeguarding measures around participant harm
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due to side effects or complications, a participant’s financial ability to pay, or their
geographic capacity to access treatments.
Unvalidated functional capacity assessment tool risks misidentifying need
The issue: The Bill shifts assessment from whole-of-person consideration to a single eligible impairment (Schedule 1 Part 3). Read together with the eligibility thresholds in Parts 8 and 9, the tool used to conduct functional capacity assessments must be capable of sufficiently identifying whether a person meets the threshold for that single impairment.
The named assessment tool is the Instrument for Classification and Assessment of Support Needs (I-CAN). I-CAN requires validation to ensure it will sufficiently identify the needs of all people with disability, including those whose needs may be fluctuating or episodic and may not be captured through a point-in-time assessment, and to ensure it is culturally appropriate for First Peoples with disability.
How this affects participants: If the assessment tool does not accurately capture the full extent of a person’s disability, including needs that fluctuate or vary over time, a participant may be found ineligible or have their supports undercounted, with no guarantee the result reflects their actual experience.
Recommendation: Do not proceed with I-CAN as the functional capacity assessment tool unless it has been demonstrably validated to identify the needs of all people with disability, including those with episodic or fluctuating disability, and demonstrated to be culturally appropriate for First Peoples with disability.
Supports cut before replacement system is ready
The issue: From 1 October 2026, the government has announced funding for social, civic and community participation supports will be cut by 50 per cent and capacity building daily activities by 10 per cent for all participants, reductions that will be implemented through the ministerial instrument power in Schedule 1 Part 4. The
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Foundational Supports system intended to fill that gap has no confirmed implementation date and is not yet operational.
How this affects participants: Supports that help participants connect with their community, build skills and maintain independence may be cut before anything exists to replace them, leaving carers and families with greater responsibilities and no additional support. These supports are often what help people stay visible, connected and safe.
My daughter’s social therapist has been crucial to build skills in dealing with the everyday social reactions – which can range from annoying to outright offensive and bigoted. Cutting this would have a huge impact on her future ability to participate in her communities.
Recommendation: Require that no reductions to community participation or capacity building supports take effect until Foundational Supports are fully operational, adequately funded and demonstrably able to meet the needs of those who will lose NDIS supports.
Thank you for the opportunity to make a submission on this Bill. My hope is that people with disability are put front and centre of decision making, and that you truly listen to the disabled community – nothing about us without us.
Regards, Sam Drummond
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Submission to the National Disability Insurance Scheme Amendment (Securing the