National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 633
Dr George Taleporos submission to the Senate Community Affairs Legislation Committee
Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submitted by: Dr George Taleporos
Date: 31 May 2026 Executive summary and key recommendations
This Bill should not pass in its current form. It breaks the core promise that people with disability and our families fought for: that when support is reasonable and necessary, it will be funded so we can live safely, with dignity, autonomy and community. The most dangerous provision is section 34A. It would allow the Minister to cut funding for supports even where those supports are reasonable and necessary. For people with high and complex needs, this creates foreseeable life-threatening gaps in support. The Bill also creates powers for broad caps, support intensity limits and worker-to-participant ratios to override individual need. It risks narrowing whole-of-person planning, weakening review rights, shifting unmet need onto families and crisis systems, and opening pathways back to commissioned or block- funded services and force people to use registered providers, removing individual choice and control. The Committee should listen to people with disability and our families. Slow this rushed process down. Protect reasonable and necessary support. Protect the NDIS as a rights-based, individualised insurance scheme. When you change the law to make it legal to ignore reasonable and necessary support, people are neglected and will die.
These are foreseeable life-threatening gaps that must not be created under this Parliament’s watch.
These are life-threatening gaps in support that you can prevent by voting against this Bill.
Key recommendations Recommend that the Bill not proceed in its current form. Remove section 34A and protect the right to reasonable and necessary support. Remove broad funding caps, support intensity caps and worker-to-participant ratios so they cannot override individual need, safety, support continuity, choice and control. Protect social and community participation as essential support for safety, inclusion, mental health, family relationships, education, employment and ordinary community life. Prevent any pathway back to block funding, commissioning or closed provider markets that remove individual choice and control. Protect review rights and access to justice, including the right to challenge funding reductions, claim rejections, automated decisions, debts, plan renewals, reassessment refusals and restrictions on supports. Require public release of draft rules, budget formulas, ministerial instruments and implementation plans, followed by genuine co-design with people with disability and our families before any major changes proceed.
1
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 633
- About me
My name is Dr George Taleporos.
I am a severely disabled man and I have worked my whole life defending and advancing the rights of people with disability and our families. I am the CEO of the Self Manager Hub, the Independent Chair of Every Australian Counts, a director of InLife Independent Living, and the host and producer of NDIS Insights with Dr George, Australia’s leading podcast on the NDIS.
Importantly, I make this submission in my personal capacity. I don’t mention here all of the problems and human rights concerns with this Bill. I have raised those in other submissions I have been involved in developing. This submission intends to demonstrate how the essential core promise of the NDIS is broken by this Bill and why we need to save our NDIS from the death and destruction that this Bill will create. 2. The original promise of the NDIS
2.1 Why we fought for the NDIS I was one of many people with disability, family members, carers and allies who worked hard to advocate for the NDIS. We fought for a national insurance scheme because we knew the old disability support system was unfair, fragmented, underfunded and unsafe. The 2011 Productivity Commission report confirmed what we already knew.
The pre NDIS system failed us. It failed people who were stuck on waiting lists for years. It failed people who were forced into group homes and institutions. It failed families who were expected to provide unpaid care until they died or collapsed from exhaustion. It failed people who had to beg for basic support, depend on charity, or accept whatever a block-funded provider was funded to offer.
The original call for a nationwide disability insurance scheme was simple. People with severe and permanent disability, and anyone who might acquire such a disability, should be able to access the support we need when that support is reasonable and necessary.
2.2 The NDIS made that promise real The NDIS changed lives because it made that promise real. It put the person with disability at the centre. It funded supports based on individual need. It gave many people real choice and control over where we live, who we live with and who provides our support, for the first time. It supported people to live in the community, pursue goals, maintain relationships, study, work, contribute and have ordinary lives.
I am deeply grateful for the NDIS. Because of the NDIS, I am alive. I can get out of bed every morning, I can work, pay taxes, choose where I live and decide who provides my support. I have seen my life, and the lives of many people in my disability community, become safer, freer and more possible because the NDIS exists and because it gives us choice and control over our lives.
2.3 Reasonable and necessary support was the core promise Reasonable and necessary support was the core promise. Those words mattered because they gave people with disability a way of realising our right to an ordinary life in the community. They meant the support a person needed to live safely and participate in the community would be assessed and funded.
I remember walking into Jenny Macklin’s office when she was the Minister responsible for creating the NDIS. I thanked her because, after a lifetime of uncertainty, people with disability could finally trust that for the rest of our lives we would be entitled to the support we need, where that support is reasonable and necessary.
2
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 633
That sense of certainty was life changing. For the first time, people with disability and our families had reason to believe there was a national system that recognised our support needs and our right to live ordinary lives.
2.4 This Bill destroys the foundation of the NDIS Then this Bill was introduced to Parliament.
When I first read the Bill, and section 34A, my reaction was immediate and overwhelming shock and distress. It felt like the foundation of the NDIS was being pulled out from under us. The hope I had carried since that meeting with Jenny Macklin, the belief that reasonable and necessary support would protect me and others for the rest of our lives, suddenly disappeared.
I could not believe I was reading a provision that would allow the Minister of the day to reduce funding for supports even where those supports are reasonable and necessary. Section 34A will allow the Australian Government to fund less than what people have been assessed as needing to live safely and with dignity.
It would give the Minister broad power to reduce funding for categories of support. It would allow caps, ratios and support intensity limits to override individual need.
This Bill takes Australia back towards a system where support is rationed, where government budgets override assessed need, and where people with disability and our families are left suffering the consequences.
For many people in our community, this is terrifying. Reasonable and necessary support is what gets people out of bed, keeps people safe and healthy, enables people to communicate, work, study, participate in community and avoid hospitals, aged care and crisis.
2.5 The human cost of rationing support When support is cut below what is necessary and below what the person needs, the need does not disappear.
It is shifted onto families, public hospitals, and the justice system.
Let’s talk about what this looks like in real life.
It means parents across the country will be forced to fill the unmet need created by this Bill until they collapse.
It means a person who has fought to live in their own home will be forced into hospital, aged care or a group setting where they face greater risk of abuse and neglect because the support that made their life possible has been cut below what is actually needed.
It means a person who needs continuous support will be left for hours every day where no one is there to help them to get out of bed, use the toilet, eat, drink, fix the leak on their ventilator, or clear the mucus in their throat that is choking them.
When you change the law to make it legal to ignore reasonable and necessary support, people are neglected and will die.
These are foreseeable life-threatening gaps that must not be created under this Parliament’s watch.
These are life-threatening gaps in support that you can prevent by voting against this Bill.
We know what’s coming if this Bill passes. We have been here before. We had a Disability Royal Commission that told us what happens when governments fail to address our reasonable and necessary needs.
3
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 633
But the difference this time is that we know the consequences of turning our back on disabled people.
I strongly oppose the Bill in its current form and you should too. Our lives depend on it. 3. Insights from NDIS Insights with Dr George
Trusted and respected advocates throughout Australia share my concerns.
On my podcast, NDIS Insights with Dr George, I spoke with Megan Spindler-Smith, Acting CEO of People with Disability Australia, Stevie Lang Howson, organiser with Disabled People Against Cuts Australia, and Skye Kakoschke-Moore, CEO of Children and Young People with Disability Australia. The messages from that conversation were clear. The Bill shifts the NDIS away from individualised reasonable and necessary support and towards cost containment, ministerial control and rationing. The discussion reflected what many people in the disability community are feeling: concern, anger, exhaustion, fear and determination to make sure this Bill does not pass as it is currently written.
Watch the podcast here: https://youtu.be/pLgaCU5X-Ck?si=TF_I1ae68EVcJw0I
3.1 The Bill changes the character of the NDIS One of the strongest messages from the experts on the podcast was that this Bill changes the character of the NDIS. It would shift the Scheme away from individualised funding and towards centralised control.
Stevie Lang Howson said the Bill represents a shift from funding based on individual people’s reasonable and necessary supports to funding based on government’s appetite to spend. That is a serious concern. If the Minister can dial support categories up or down through legislative instruments, the entitlement becomes less secure. A participant’s support may no longer depend on what is reasonable and necessary for that person, but on a category-level funding decision made far away from the reality of that person’s life.
This is especially concerning because disability support is deeply personal. A broad percentage cut does not know whether the person needs supervision to avoid choking, support to communicate, assistance to attend a medical appointment, help to leave the house, or one-to-one support to prevent harm. A system- wide cut treats very different lives as though they are the same.
3.2 Reasonable and necessary support is under threat Stevie Lang Howson described the Bill as shifting the NDIS away from funding based on what individual people need for our reasonable and necessary supports, and towards funding based on “government’s appetite to spend”. That is exactly what section 34A does. It changes reasonable and necessary support from an individual right into something that can be reduced by a Minister at a category level.
Skye Kakoschke-Moore also warned that section 34A gives the Minister power to reduce funding for specified groups of supports by a particular percentage, with the detail coming later through rules or legislative instruments. She was particularly concerned about the impact on children and young people, because cuts to these supports would increase reliance on parents and caregivers during critical stages of social development, identity formation and independence.
The most frightening part of the Bill is the threat to reasonable and necessary support. Proposed section 34A would allow funding for supports to be reduced below the actual cost of those supports, even when those supports are reasonable and necessary.
This was one of the strongest concerns raised in the podcast.
4
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 633
3.3 Social and community participation supports are not luxuries The podcast also highlighted the danger of treating social and community participation as optional or discretionary. For many participants, these supports are the difference between being isolated at home and being part of the community.
Megan Spindler-Smith explained that these supports enable people to leave the house, maintain friendships, go to work, engage in education and participate in community life. These supports are often described as social, but their purpose can be much broader. They can include communication support, personal care, supervision, behavioural support, health-related support, transport, relationship maintenance and support to take part in ordinary life.
The Committee should reject any framing that treats community participation as a lifestyle extra. Inclusion is a core purpose of the NDIS. The right to live in the community cannot be delivered if people do not have the support to actually participate in community life.
3.4 Block funding and commissioning would take us backwards The podcast also discussed the risk of block funding, which the Government may describe as commissioning. The disability community has fought for decades against systems where money is given to organisations rather than attached to the individual person. Block funding gives power to providers and systems. Individualised funding gives power to people with disability.
Before the NDIS, many people had to accept whatever was available from local services. If a provider was unsafe, unreliable, unsuitable or controlling, people often had nowhere else to go. Individualised funding changed that power dynamic. It allowed participants to take our funding elsewhere if a provider was not meeting our needs. Under the NDIS we can self direct our supports and directly engage support workers that meet our individual needs.
This is central to safety. As Stevie Lang Howson said in the podcast, if a directly engaged support worker is unsafe or disrespectful, the participant can choose not to work with that person again. In a large provider or block-funded system, the participant may have to navigate a complaints process, and the final decision may still rest with someone else.
Block funding also risks creating closed markets. It can favour large providers, reduce innovation, push out sole traders and smaller supports, and undermine self-management and self-direction. It can leave people with disability negotiating with organisations for support that should be available as an individual entitlement.
This concern is linked directly to the Bill. Schedule 2, Part 1, item 3 would insert proposed section 10C, which leaves the definition of an NDIS provider and the reach of future registration rules to later NDIS Rules. Those rules could determine who is treated as a provider, who is excluded, and whether participants must use particular types of providers for particular supports.
The Bill must not open a pathway back to those arrangements. Commissioning, block funding and registered-provider-only models should never be used to remove a participant’s practical choice and control over who provides intimate and essential support.
3.5 Review rights and accountability matter Another message from the podcast was the importance of appeal rights and accountability. If many participants succeed at review, that should prompt serious reflection about the quality of NDIA decision- making. It should not be used as a reason to narrow rights, weaken review pathways or rewrite the law so participants are less likely to win.
5
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 633
The Bill raises serious concerns because some changes may be made through legislative instruments or automatic processes that are not reviewable. It removes an essential pathway to rectify unsafe decisions made by government. This is dangerous and unfair.
The Committee should strengthen, not weaken, merits review. Participants should be able to obtain reasons, challenge decisions and have independent review where a decision affects funding, support categories, claims, debts, reassessments, access, plan renewal or participant status.
3.6 The process has been rushed The timeline for responding to this Bill is unreasonable. The Bill is long, complex and deeply consequential. It affects access, planning, supports, claims, records, debt, review rights, ministerial powers and the future direction of the Scheme. People with disability and our families need time to understand what is being proposed and what it will mean in our lives.
In the podcast, Skye Kakoschke-Moore said the community is ready to work with government but needs time. I agree. Rushed law-making in disability policy is dangerous and unsafe.
Two weeks is not enough time for people with disability, many of whom are managing complex support needs, communication barriers, fatigue, health issues, caring responsibilities and accessibility barriers, to understand a Bill of this scale and make a meaningful submission.
The Committee should recommend that the Government slow down, release the relevant rules and instruments, and engage in genuine co-design before proceeding. 4. The human impact
As Megan Spindler-Smith said in the podcast, if people lose NDIS support without a real alternative, they do not stop needing support. The need does not disappear because a plan is cut, a category is capped, or a person is pushed out of the Scheme. It shows up somewhere else, often in the most dangerous and expensive way possible. People end up in hospital, psychiatric wards, aged care or the justice system. They become isolated in their homes. Families who are already exhausted are forced to carry impossible levels of unpaid care. People deteriorate, relationships break down, crises escalate, and preventable harm becomes far more likely.
Budgets are about priorities. Australia can choose to fund a disability support system that keeps people safe, included and able to contribute.
I am deeply worried that this Bill treats support as a cost to be contained rather than an investment in safety, inclusion and human rights. That is a dangerous shift and this is a dangerous Bill.
The NDIS must remain a scheme that recognises disabled people as rights holders. It should not become a system where a Minister can decide that a category of support will no longer be fully funded regardless of what individuals need. 5. What the Committee should recommend
I ask the Committee to recommend that the Bill not proceed in its current form.
If the Parliament continues to consider the Bill, I ask that it be substantially amended to protect:
the right to reasonable and necessary support, including removal of section 34A or, at a minimum, a clear guarantee that the NDIS will continue to fund in full all disability related supports that are reasonable and necessary protection against broad funding caps, support intensity caps and worker-to-participant ratios overriding individual need, safety, support continuity, and our right to decide where we live, who we live with and who provides our support;
6
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 633
choice and control, including self-management and self-direction and protection against block funding, commissioning or closed provider markets that remove individual choice and control; social and community participation as essential support for safety, inclusion, mental health, family relationships, employment, education and ordinary community life; review rights and access to justice, including the right to challenge funding reductions, claim rejections, automated decisions, debts, plan renewals, reassessment refusals and restrictions on supports; genuine co-design with people with disability and our families, and a commitment to maintain the promise of reasonable and necessary support in the NDIS.
The Committee should also recommend that no major NDIS changes commence until the Government has publicly released drafts of the relevant rules, budget formulas, ministerial instruments and implementation plans, and until people with disability and our families have had a genuine opportunity to scrutinise them. 6. Conclusion
I am making this submission because I believe the NDIS is one of the most important social reforms Australia has ever created. It saved and transformed our lives because the principles of reasonable and necessary support are at the heart of the NDIS.
The NDIS can and should be improved. But this will not be achieved by cutting supports below need, weakening review rights, expanding ministerial control or returning to provider-led models that the disability community fought to leave behind.
The Bill disregards our right to reasonable and necessary support, and creates unchecked Ministerial powers for broad funding cuts, caps and unsafe support ratios. It will push people back towards systems that have already failed our community. It will lead to serious neglect, injury, illness and death.
The original promise of the NDIS was that people with disability, and anyone who might acquire a disability, could access the support we need to live safely, with dignity, autonomy and inclusion. That promise is now under serious threat because of this Bill.
I ask the Committee to listen to people with disability and our families. Slow this process down. Do not pass this dangerous Bill in its current form. Protect reasonable and necessary support. Protect the NDIS as a rights-based, individualised insurance scheme. Protect the promise that so many of us fought for.
If you don’t, disabled people will die.
7
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 633
Appendix A: Podcast transcript
Podcast: NDIS Insights with Dr George
Link: https://youtu.be/pLgaCU5X-Ck?si=TF_I1ae68EVcJw0I
Skye Kakoschke-Moore (00:03)
it’s a huge Bill. It’s more than 100 pages long and it represents the biggest changes to the NDIS since it began and the largest ever cuts to any social service in a single budget.
it’s very, very hard to overstate just how significant the consequences of this one Bill will be on the entire lives of an entire part of the Australian community.
Stevie Lang Howson (00:25)
we’re seeing this real shift of funding being based on what individual people need for their individual
reasonable and necessary supports to funding being based on government’s appetite to spend. So the Minister can dial up or down the level of support being provided in different categories up to what looks like almost that whole category if they so chose. And so those are some really concerning shifts in the actual character of the NDIS.
Megan Spindler-Smith (00:52)
Reform must not come at the expense of safety and dignity and inclusion. You can’t cut first and then design the systems later. And right now, there’s nowhere else for many people to go.
No one should lose support before equivalent alternatives are actually and genuinely available.
Dr George Taleporos (01:17)
if this Bill does go through, what kind of
effect do you think this will have on people’s lives?
Hi everyone, welcome to the show. Great to have you here.
Let’s start with some introductions
Megan Spindler-Smith (01:55)
I’m Megan Spindler-Smith. I am the Acting CEO of People with Disability Australia, which is the Cross Disability Peak, or DRO.
Stevie Lang Howson (02:04)
Hi, my name is Stevie Lang Howson I’m an organiser with Disabled People Against Cuts Australia, which is a grassroots campaign network of disabled people aimed at fighting cuts and austerity.
Skye Kakoschke-Moore (02:16)
I’m Skye Kokoschke-Moore, I’m the CEO of Children and Young People with Disability Australia or CYDA and we’re the national representative organisation for children and young people aged 0 to 25.
Dr George Taleporos (02:28)
It’s been a massive week for NDIS. We had the budget on Tuesday, and yesterday we had the very, very significant Bill introduced to the Parliament. So I want to start by asking all of you
How are you feeling? And why is it really important for people to pay attention to what’s happening to our NDIS right now?
Megan Spindler-Smith (02:59)
overall what I’m feeling is absolutely concerned.
And also quite driven to try and see what we can do and what is possible, even with what’s on the table and even with what we’re facing in this space.
Stevie Lang Howson (03:14)
8
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 633
frankly, I feel quite angry and betrayed by this government and by what has been proposed.
This was a government that was elected saying that they were going to save the NDIS, that they were going to fix the NDIS. And what it seems like they would prefer to do is rewrite the NDIS to be something else. So I find that quite disturbing on a personal level. I’m quite concerned for my own future. And for the people that I care about.
Skye Kakoschke-Moore (03:39)
My brain hurts. There’s such a lot of detail and technical information to understand in such a short amount of time. But like Megan, a kind of feeling that I’ve had over the last few days is this sense of feeling heartened because of the solidarity that we’re seeing within the community, even at our own organisation and I’m sure other organisations.
there’s this sense of we’ve got to come together now. This is serious. This is our focus.
Dr George Taleporos (04:06)
Let’s now move into what actually is the government planning to do to our NDIS. What are your key concerns and if whatever the government is proposing gets through, what would be the real-life impact of that on the lives of people with disabilities and our families?
Megan
Megan Spindler-Smith (04:27)
what we’re seeing in the Bill right now There’s stricter access and eligibility criteria
how you’re going to be able to get onto the scheme, but also what does it mean when it comes to how we actually prove that we’ve met the level of pretreatment
the number of steps someone would have to take to prove that they’ve done enough before being eligible.
Minister Butler talked about the aspect around social and community participation, but it does seem to be potentially touching on more than just that space.
Dr George Taleporos (05:03)
You touched on eligibility. You also touched on the fact that government will have a power to dial down or cut services across the board for particular types of supports. And social and community support is the one that we heard the Minister saying that he was planning to cut by 30%. Then I heard…
in the Bill, there’s a figure of around 50%. This is all quite scary for people who depend on these supports. Stevie, as an NDIS participant and as a strong advocate, what are you thinking about these announcements and these changes that have been proposed?
Stevie Lang Howson (05:51)
Yeah, I think fundamentally what we’re seeing from this Bill is a very specific strategy for cost cutting. There’s actually a lot of different pathways that government could take to reforming the NDIS and making it stronger and fairer and even to reducing some of its costs. But they’ve sort of chosen this very particular strategy and really what it hinges on is this idea of really
limiting supports to specific eligible impairments rather than looking at whole people. And we saw a little bit of that come in in the 2024 legislation, but this legislation really beefs that up. We’ve gone from, you know, arising from a specific impairment to directly arising from a specific impairment. And kind of in tandem with that, we’ve got this idea that now when we look at functional capacity,
we’re not doing that with reference to a person’s real life, personal and environmental circumstances. We’re doing that in an abstract way, kind of imagining that that person doesn’t have those specific circumstances. And then what we’re also seeing is this rearticulation of permanence that really goes to overturning and addressing a previous federal court decision of Davis, that is going to mean that even if you have a very severe
and debilitating condition, if there’s a treatment that is potentially available to alleviate that, even if it’s very costly or it’s not accessible to you perhaps because of other impairments that you have, or perhaps it’s not going to be fully effective, but it might somewhat alleviate that condition, you may actually be required to go and undertake that treatment as well. And then
we’re seeing this real shift of funding being based on what individual people need for their individual
9
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 633
reasonable and necessary supports to funding being based on government’s appetite to spend. So this idea of a support determination means that government or the Minister actually, not going through parliament, but the Minister can dial up or down the level of support being provided in different categories up to what looks like almost that whole category if they so chose. And so those are some really concerning shifts in the actual character of the NDIS.
and also the kinds of people who are going to be receiving support under the NDIS.
Dr George Taleporos (08:02)
young people and children in particular are a focus of the Bill.
What are your reflections on this Bill?
Skye Kakoschke-Moore (08:11)
First up,
it’s a huge Bill. It’s more than 100 pages long and it represents the biggest changes to the NDIS since it began and the largest ever cuts to any social service in a single budget.
we need to say it like it is. To be clear, there’s not much in the Bill that CYDA isn’t worried about. We know that there’s currently more than 467,000 NDIS participants that are aged under 25.
And all of those children and young people and many more who aren’t currently on the NDIS but would certainly benefit from additional support are going to be impacted by this and they’re going to be impacted by it for years to come. In particular, CYDA’s worried about the moves to tighten the eligibility criteria to enter the scheme, including the new requirement for prospective participants to have undertaken in the government’s language, all appropriate treatment.
to remedy or alleviate an impairment. And Stevie spoke to that ⁓ so well just now.
We already know that children and young people with disability and their families can wait years and they can spend thousands of dollars accessing specialists for services and reports. And that’s today under the Scheme as we know it. This measure adds another layer of complexity because when will treatment be deemed appropriate
For children and young people who are growing and they’re developing really rapidly, will the goal posts keep shifting further and further away because a wait and see attitude is taken because they’re deemed to have more time to figure it out. We’re also really worried about section 34A of the Bill. And this is the section that gives the Minister power to reduce funding for specified groups of supports by a particular percentage.
We don’t know for sure what that percentage is going to be yet because that’s going to come later in the rules or this legislative instrument. But what we do know is that this power to reduce funding is going to be applied to social and community participation supports in particular. So almost 55 % of NDIS participants aged 15 to 18 have social and community participation supports in their core funding. And that increases to 80%.
participants aged 19 to 24. So once again, these are tens of thousands of people that this one change, this one change in this massive Bill is going to impact. Cuts to this funding will mean that children and young people will be more likely to become increasingly dependent on the adults in their lives during a really key stage of their social development and their identity forming. We’ve already heard from families
in budgets of this kind will increase carer burnout and will lead to parents and caregivers working less or not at all. And we already know that cost of living is a huge issue. It’s an even bigger issue for people with disability and their families. So it’s very, very hard to overstate just how significant the consequences of this one Bill will be on the entire lives of an entire part of the Australian community.
Dr George Taleporos (11:11)
Thank you all for your insights
if this Bill does go through, what kind of
effect do you think this will have on people’s lives?
Megan Spindler-Smith (11:23)
George,
is going to have a huge impact. It’s potentially going to stop many parts of the disability community being able to just have the standard lives that we all deserve.
10
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 633
I think that is not an understatement. people are worried
about not qualifying, but they’re also worrying about the fact that
do I actually live my life, be safe and not have to potentially go further downhill to get what
need. And what I mean by downhill is when you are somebody with a fluctuating support need levels, when you have a non-apparent disability, especially what we know is that things like
the functional capacity reviews or the ways that they work don’t account for the fact that not every single day looks the same and what you need changes.
let’s just talk about the social and community participation supports, if we’re seeing that massive reduction happening,
What we’re going to then see is people unable to leave the house, unable people to maintain friendships, go to work. I know that without support, there is no way I can do my job. Absolutely no way. You wouldn’t be able to engage in education, have a basic active participation in community life. And the likelihood is that
the isolation and mental health deterioration that will happen with the disability community is only going to increase because even though sometimes we talk about social and community participation outside of the disability community as like a non-essential or a lifestyle support, it’s actually not correct. It’s damaging because these are not luxuries. These are actually the difference between being part of the community that everyone else gets to be part of
we cannot go back to the experiences that we had through what was shown in the DRC Do we need to get sicker?
according to government requirements before we’re able to access the help that we need.
Dr George Taleporos (13:32)
We don’t want to end up in hospital. We don’t want to end up in aged care facilities. We want to live in the community like everyone else. And that was the promise of the NDIS. Stevie, do you think that the promise has been
And also, how will this affect people that you know and love?
Stevie Lang Howson (13:57)
Yeah, absolutely. The promise has been broken. This version of the NDIS is not the system of individualised reasonable and necessary supports that the NDIS promised. And it’s also not the vision of disabled people being empowered in their communities to live with the same degree of choice and control that everyone else enjoys. That promise is going to be broken by this Bill. But more than that, I think we are going to see a disaster for disabled people’s lives, for their human rights.
what we’re going to see George is two very different experiences for those people who are deemed to continue to be eligible for the NDIS. Those people are going to have greatly restricted choice and control.
The Minister is going to acquire with this Bill, if it does pass, the ability to cap support, to set ratios or maximum ratios, and to do all kinds of things that will, as we’ve seen with the thrust of these reforms overall, guide people towards congregate living as the path of least resistance. And that is a massive step back for our community overall, and will be disastrous in the lives of
some disabled people and will have a very real human consequence when, you know, one support worker is expected to care for three people who were previously receiving their individual funding at, you know, a 24-7 level that, you know, what is that going to look like in the lives of those people? mean, that’s horrific.
the Minister will have the discretion and ability to reduce community participation and daily living capacity building now, but that’s now. If they don’t achieve the cost cuts that they want, they can move on to other supports. They could move on to assistive technology and say they’re only going to fund 80 % of the cost of your custom wheelchair.
So can do that for any support. So it’s going to fundamentally change what it’s like to be on the NDIS. But then there is going to be a massive cohort of disabled people who will no longer be on the NDIS. And what that looks like at the moment is they will be walking off into a cliff of nowhere to go. And where that nowhere to go is, is not actually nowhere to go. Where you go is hospital. Where you go is your family. Where, and you overtax them and you burden them and you…
deteriorate your relationships with them. Where you go is the justice system for many people within our community. And where you go is the end of the line, unfortunately. And so that’s what we’re going to see if people are catapulted out of a scheme that has allowed them to have reasonable and necessary supports and into what is at this stage still a unfunded void of supports that don’t exist yet.
11
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 633
and which disabled people have not been able to even comment on whether they would be sufficient to our needs.
Skye Kakoschke-Moore (16:46)
Yeah, this Bill, it feels to me like the community’s being asked to sign a blank cheque because so much is being left to delegated legislation. So as Stevie mentioned, there can be caps ratios set by the Minister. We also know that in the Bill it has a transitional rule, which is called a Henry VIII clause, which sounds very ominous.
But essentially what that means is that for a period of 12 months, if this Bill is passed, the Minister will be able to make changes to the Act without it needing to go through Parliament. So there’s a huge level of risk associated with this. know that Parliament has spoken about that before. These clauses aren’t used that often because they are inherently risky. What we’re really worried about is the impact that these changes are going to have.
for a child and young person through their life course. So we have heard through surveys that we’ve run in the past that when families of younger children and older children are speaking with the NDIS around plans, particularly at plan reassessment time, they’re often met with the argument that the supports that they’re requesting aren’t considered reasonable and necessary because it’s deemed parental responsibility. And that if…
that family is unable to meet that parental responsibility, then the NDIA threatens to call Child Protective Services. So this isn’t an isolated case. We’ve had multiple reports of this. So what we’re going to see is families under a huge amount of strain, children not getting essential supports at a time in their life when those supports can make a huge difference to their trajectory. And we’re going to have young people who will feel as though…
they have nowhere else to go, that they must rely on, as we say, the adults in their lives and the strain that that puts on their relationships. And the impacts of that will be felt for decades to come. The mental health impacts of these changes will be significant. If the government isn’t providing support through the NDIS, then it’s essential that there is some increase in mental health funding and availability. We know that this is going to be an outcome. So let’s get ready for that.
Yeah, it’s just the more I’m talking about it, the angrier I’m getting.
Dr George Taleporos (19:00)
Yeah, We’re all feeling a mix of anger, frustration and utter devastation to be real. The promise of our NDIS was reasonable and necessary. I remember walking into Jenny Macklin’s office, who was the Minister at the time and saying, Jenny, thank you. Now that…
you’ve done this work, I feel like for the rest of my life I will be entitled to what I need, that’s reasonable and necessary. And last night when I saw the Bill, I thought, I don’t think that’s going to be the case if this goes through.
The other thing that I noticed in the announcements in the Bill and in the budget is a move towards block funding of services and the government calls this commissioning Stevie, can you
Talk us through, what does block funding mean when it comes to supports?
Stevie Lang Howson (20:10)
Yeah, fundamentally what block funding is, is it’s an approach to funding disability supports and instead of having an individual budget for each disabled person based on what’s reasonable and necessary for them
Block funding says, Stevie, you live in Armidale. We, the government, we’re going to ex-ABC ability big service provider a big chunk of money. And what their job is to do is to look after all the disabled people in Armidale. So if you need disability support,
you can go over to ABC ability and they will help you out with a package of support that you’ve received through that provider. Now that might only be for specific parts of people’s plans. For example, they might do it specifically for SIL. It seems like that’s what they’re leaning towards doing. But what it means is that disabled people are not receiving funding as a right and entitlement of an individual, but that their funding and the supports that they receive.
are being decided and determined by a company that they may or may not have a positive relationship with and that may or may not take their disability support needs seriously and that may or may not protect them from abuse and neglect. And so what you see with block funding arrangements is that that company who receives the big pot of money, they get to make the decision about who gets what. And that fundamentally undermines our rights.
to receive the disability supports that we need to actualise and realise our human rights. Because we are not the recipients of an entitlement or support, we are negotiating with a company to receive our entitlements and supports.
Dr George Taleporos (21:48)
12
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 633
I think that’s an excellent explanation. I know Megan People With Disability Australia has a long history of advocating for individualised funding and against block funding and institutional funding arrangements. Would you like to say a few words on this?
Megan Spindler-Smith (22:07)
Look, absolutely. The thing is, is that if you go into this set style block funding approach, exactly what Stevie’s talked about, the likelihood of impacts are so much higher.
And the DRC
absolutely showed the problem with what happened to people in block funding because the fact is is that you cannot apportion those things evenly or equitably and still allow people to have the choice and control that they need for their lives. And this is especially the case when you think about spaces where
there is less oversight or less individualized ability to actually control what is happening for your life. And so when you go into these spaces that are not disabled person led, when it’s actually organizational led then people with disability just
are a line item within that space. And so what that means is that the ability to self-direct, to self-manage and to have that participant choice and control within that space is not possible. And we know when we’re talking about those sort of impacts,
All we’re going to see is a closing of settings where people can’t even necessarily have the access to be able to even say, I’m being impacted. I am being mistreated. And we heard the Minister say in his speech about the problems with support workers, being on their phones, people getting hurt and harmed. I’m not sure.
that you can prove to me that we go into a block funding style setup, that that’s going to be resolved through that process because the DRC, the responses, the history that we have lived through proves the opposite. And so if we are going to make sure that this is about more safety and safeguards, they don’t necessarily go in balance with
being able to ensure that you have access to the trusted workers and flexible arrangements that you need to make your life work properly. And that’s what participants are worried about because you don’t get choice if someone else is in control of how things happen.
Stevie Lang Howson (24:30)
Yeah, that’s exactly right, Megan. with what you just said about support workers on their phones, if I am directly engaging a support worker and they spend the whole shift scrolling on their phone and I hurt myself because of it, well, they’re not coming back for another shift ever. I’m just not going to work with them again. Whereas if that support worker who’s scrolling on their phone has been sent to support me by a large registered provider,
then in order to get them removed from my support team or never have them come back, I’m going to have to go through a whole complex process and ultimately it’s going to be the decision of their boss rather than my decision.
Dr George Taleporos (25:06)
Absolutely, and I think that what is critical here is that issue around safety. That if you only have one service that you can choose from, and maybe there’s two or three, if the other two or three you didn’t like them either, and they also abused you, or they also provided inadequate support or ineffective support
to you, what do you do then? And that’s why the disability community over 50 years advocated for individualised funding so we could say, sorry you’re not meeting the standards that I require, I’m going to take my funding elsewhere.
There’s another promise of the NDIS that it seems is under threat. What are your thoughts, Skye?
Skye Kakoschke-Moore (26:03)
The move to try and associate the savings in this Bill with security or safeguarding somehow just doesn’t add up. And that’s one thing that I’ve been quite frustrated about really is the language that’s being used around these reforms. And we’re seeing it with other reforms too, but the justification for these changes is wrapped in language like
safeguarding, support, wellbeing, protection, integrity. All of that will fall very flat and very hollow once the real language is used, which is the ability to implement ⁓ cuts or caps on supports, the requirement to have undertaken all appropriate treatment. So it’s, I think, a lesson for us all in terms of being very, very mindful.
of what is government speak and what is going to be the on the street impact that we see from the changes that they’re proposing to make.
13
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 633
Dr George Taleporos (27:03)
Absolutely.
Is there anything that anyone actually thought was positive in this budget and in the legislation? And I’m asking this question because I just think that when we work with government, we need to give them something that we like or that we think is helpful. If we’re seen as saying no,
to everything. They’re less likely to take us seriously. Is there anything?
Megan Spindler-Smith (27:43)
I think it’s a hard question because…
The negative parts, the impacting parts feel very overwhelming
I think that in the actual budget, probably the one positive was that we saw that the NDIS appeals funding had been extended for two years and that wasn’t a given. And so that does mean that there is still going to be NDIS appeals funding supports for at least the next two years. Should it be longer? Absolutely.
Dr George Taleporos (28:17)
Talking about appeals I remember the Minister saying in his announcement that he criticised the tribunal for essentially making it harder for the agency to control the costs. Into the future, if this Bill does go through,
Will there be the same ability to appeal what you receive in your plan and that might be grossly inadequate?
Megan Spindler-Smith (28:48)
We don’t know.
Skye Kakoschke-Moore (28:49)
Yes,
I do know that when new framework planning has been discussed, that the government did confirm that if a participant is unhappy with their support needs assessment, that they can appeal that, but that the tribunal will be unable to vary the support needs assessment. They will only be able to send it back to the agency for the process to be repeated.
So while there be some appeal rights in relation to supports needs assessments, they’re not going to be the same as what participants are entitled to today.
Stevie Lang Howson (29:24)
Yeah, I think that this also just goes to the way that the character of the NDIS is being changed as well. So we’re seeing a real shifting of the language and the focus of the NDIS Act. And I think that this is actually being written almost as a direct note to the federal court of don’t you go and expand access or don’t you go and interpret this.
in a way that is consistent with the UNCRPD. We’re actually doing something very different now. What we’re doing is cost containment. And so a lot of the language of the UNCRPD that was in, for example, principles relating to participant plans, gone. It’s just, it’s not in there anymore. A lot of the ways that individualization, reasonable and necessary, even in relatively innocuous places, the words reasonable and necessary have been replaced with
NDIS, so you know, not reasonable and necessary supports, but NDIS supports. And I think that the way to view that is that not only is there going to be a tamping down of what specifically you can appeal, but those changes are directly targeted at the kinds of appeals that participants were winning. So participants were winning appeals about, hey, you know what?
you can’t look at me as just a person with a brain injury or just a person with autism. You need to look at me as an autistic person with a brain injury. And that has a very different version of what my functional capacity looks like to just seeing either of those things. So that’s why we’re seeing that language around specific impairments being really dialed up. Similarly, we’re seeing this idea of functional capacity. Participants were winning appeals.
by saying, need to look at my functional capacity in the context of my life. And so we’re seeing that being changed. And participants were also winning appeals by saying, you know what, this might not be reasonable and necessary for every disabled person, but it is reasonable and necessary for me. And so I think what we’re seeing in this legislation overall is a targeting of the kinds of appeals, because we know the
14
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 633
NDIA has a terrible track record of winning anything in the ART. And so this legislation has actually, I think, been quite with surgical precision, designed to rebalance the scales so that participants are going to be in a much worse situation and where they’re going to have to contend with in their appeals this really strong language around financial sustainability, around having parity between different types of government support systems, so aged care, veterans’ defense.
between proving that they’ve done every possible thing to alleviate their condition, those are going to be really hard hurdles for people to overcome in the tribunal and in the court. And so I think we need to understand this as a real shifting of the power dynamic between participants and the NDIA in any kind of litigation that we might want to undertake with them.
Dr George Taleporos (32:22)
Also, I think it is very dangerous that they’re putting the term financially sustainable into whether they’re going to fund someone’s supports because, I’ll be honest with you, I have very high support needs and a politician might look at me and say, I don’t know if you’re worth keeping alive. You’re costing us a lot of money.
I think maybe my life isn’t financially sustainable to a certain person who might happen to be a Minister it’s really scary to see that in the legislation.
Megan Spindler-Smith (32:57)
George, let’s be really clear. No one but the person themselves should be able to decide if their life is worth while. Let’s be really clear about that. But I think linking to what Stevie said and what you mentioned before around the discussion around kind of throwing a bit of shade on the fact that so many things went to the ART, should we not then be considering
Well, is the NDIA making decisions effectively? Are they actually doing their job? And do they have the right skill set development processes and internal administrative processes to be able to build these things on?
If too many things are going to the ART and it’s being overturned so many times, for instance, in 2023, 24, 90 % of ART matters linked to the NDIA or in the NDIS were overturned or were returned to in favour of the participants. So does that not demonstrate a symptomatic issue?
should we not fix the base decision-making platform ensure that we actually have the right people, the right
Dr George Taleporos (34:14)
Absolutely, one thing that I think is really
obvious right now is that people with disability and our needs to be included and supported, yes, it costs money. But when you take that money away from the budget, The need doesn’t disappear.
Dr George Taleporos (34:35)
Just jumping in to say thank you so much for watching and it would really mean a lot to me if you could subscribe to the channel. And please share the podcast with your friends and family and whoever else needs to hear it. I also love reading your comments. So please leave your
note in the comment section below. Okay, back to the conversation.
Dr George Taleporos (35:03)
What would you like to say to both Jenny and Mark who could be listening to this podcast right now? Can I start with you, Skye?
Skye Kakoschke-Moore (35:14)
I’d say to the ministers that there is a huge community that is right now willing and ready to work with you on how to make the NDIS sustainable. Give us some time. Let us understand this Bill. We will all have a better outcome if we can slow the process down and we give these reforms some more careful thought. The community is ready and we’re waiting. We don’t want to be rushed.
Dr George Taleporos (35:39)
Megan?
Megan Spindler-Smith (35:40)
Reform must not come at the expense of safety and dignity and inclusion. You can’t cut first and then design the systems later. And right now, there’s nowhere else for many people to go.
15
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 633
No one should lose support before equivalent alternatives are actually and genuinely available.
And I kind of add to that and say, especially in regional remote areas, because that is the area that does get left behind a lot of the time in this. We as a community of disabled people, as the disability community, we deserve the transparency, the safeguards and the genuine co-design from the beginning.
And
When governments get disability reform wrong, people experience it as injury, deterioration, and even death. And I don’t say that lightly. I’m not known as someone who says things like this lightly. We cannot afford that. And so knowing that our safety and our lives are not an afterthought is going to be an extremely important part of this.
Dr George Taleporos (36:48)
Stevie?
Stevie Lang Howson (36:49)
I think I would say stop.
you’re being badly advised. You’re being badly advised by people who do not understand disability. And that’s okay. Most Australians don’t understand disability. It’s one of those things that you kind of find yourself understanding usually because you’re in it or someone you love is in it. It’s not something that’s necessarily easy to understand. For example, it might seem to you like,
Well, we’ve got the aged care system that looks like this over here. And you know, why that isn’t going to work. you’ve both said the
the phrase that you kind of repeat as a mantra of nothing about us without us, that means something for a reason. It’s not just a nice thing to say. And what it means is that if you try and change the disability support system, that is the key thing. The NDIS is the key thing that ensures disabled people’s human rights in Australia. We don’t have robust human rights legislation for disability anywhere else. The NDIS is it. And if you’re going to get in there with the tools and change that around,
You’re going to severely impact people’s lives, their human rights. You’re going to cause catastrophic outcomes that I don’t actually think you’re predicting. And I don’t actually think that you’ve properly considered because I don’t actually think that you properly understand it. And that’s why there’s amazing people like Megan and Skye who will talk to you really nicely in a way that I’m probably not going to be able to. And they’ll explain it to you. Dr. George will explain it to you. They will help you.
And there are parts of the community that are willing to work with government to make reforms that will hopefully kill not as many people. The other thing that I would want to just quickly add to all of that is that ministers, whatever reform you design is going to be implemented by the NDIA. And there are very, very serious problems with the operation of the NDIA. Please.
Before you do anything, go and look at what’s going on there. Because part of what we’re all so afraid of is that this legislation grants sweeping powers to an agency that has significant problems with both its capacity and its culture.
Dr George Taleporos (39:00)
Thank you,
People will be thinking, what can we do now? What’s going to happen next? These proposals are not.
yet legislated. Can you Megan take us through the process that we need to be aware of with respect to these changes?
Megan Spindler-Smith (39:21)
now that the legislation has been introduced into parliament, it has been referred to inquiry. And that report is due on the 16th of June. Now, to be blunt, that’s not a lot of time.
That’s a very quick turnaround for this. There must be proper parliamentary scrutiny and that short timeframe is hard to deliver in. Basically what it means is that you can provide a submission. You can say what you think about this legislation. You can…
ensure that your needs and thoughts and concerns are raised up. And that has a closing date in writing of the 29th of May. So very quick, the short term. Organisations like PWDA we are already hitting the ground running on this. We are already starting to understand what it is we need to be pushing on.
16
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 633
building out as much data as possible, trying to understand who else we can work with to get access around economic modeling, other things like that. And we’re trying to work with other similar organizations like CYDA to make sure that we are actively providing alternative options, not just saying, here are all the problems with this. We need to say that, don’t get me wrong.
but that’s important. The disability community still needs answers around things around the assessment tools, the appeal rights, those transitional arrangements And that information doesn’t necessarily exist right now. So what we need to be doing is making sure that in this short timeline, we are
Speaking to as many decision makers as possible, staying as engaged and on top of the information as possible. And as part of an organisation like PWDA, part of our job is also to make sure we share as soon as we can, any information that is clear and in an accessible way. Because let’s be clear, the Bill itself is so big, like Skye said, like 100 pages.
it’s not accessible to everyone to be able to read that and go, OK, I understand what this means for me and my life. So, I mean, that’s just a starting point. It’s also about sharing those real stories. obviously, PWDA currently has our campaign around reasonable, necessary and ordinary, which I know, Stevie, I’ve been so excited that you’ve been engaged with that as well.
But those stories are just part of it. It’s so many different options that we need to take to start that process. So we want your opinions, voices and your knowledge.
shared as part of this because even if it can only shift things a small amount, that small amount is extremely important
Dr George Taleporos (42:20)
Two weeks to put in a submission is not reasonable. Skye, what are you trying to do to make sure our community has its concerns and voices heard?
Skye Kakoschke-Moore (42:33)
CYDA had a feeling that the Bill was coming as did many other organisations and people. We had hoped there was going to be an inquiry but we weren’t sure. We thought the inquiry was going to be short if there was one. So we were correct on a few fronts but the inquiry is even shorter than we’d anticipated. As we were preparing we have, as fate would have a…
some focus groups happening next week with young people with disability to speak with them and hear their views on
In my experience, often it’s the human stories that are remembered the most and that have the most impact. I agree with Megan, we need to forefront those.
And it’s even better if we can come with some solutions. It does feel unfair though, because the government has had months, if not a year, who knows how long they’ve been thinking about this legislation for, in order to come up with these new rules. We’ve been given a few weeks to try and one, understand it, two, understand what it means for our community, and then three, also try and come up with some alternatives. It’s not impossible, it’s gonna be hard to do, but.
We need to make sure we are exercising our democratic rights, which are to engage with the Senate committee process, contact our local MPs and senators and tell them what we think of the Bill, what we think needs to change. The pressure is real. If enough of them are contacted and they’re contacted by enough people, it’ll be much clearer just how serious these reforms are and how seriously they need to take them as members of parliament.
Dr George Taleporos (44:05)
Stevie?
Stevie Lang Howson (44:06)
Yeah, I think I’d reiterate that last part of what Skye said. We need to remember that our parliamentarians, work for us. So every single one of you, you have six or two senators, depending on whether you’re in a state or a territory, and you have a local member who represents your area. Mine is Barnaby Joyce, but the rest of you have someone who isn’t Barnaby Joyce. So you can write to that person. You can call that person. You can request a meeting with that person. That person works for you. Their job is to represent you.
in Canberra. In reality, our political system works in lot of complex ways that aren’t quite like that. But fundamentally, in a democracy like ours, that is how it’s supposed to work. And so when you go into those conversations or when you write that letter, don’t think of it as approaching, you know, a scary person. This is someone who’s working for you to make sure that your voice is heard in our national meeting place. So absolutely get stuck in.
17
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 633
I would recommend that every single person who’s listening to this, if you’ve listened to this whole podcast, you already know enough about this Bill to fire off a letter. If you’ve already done one throughout the 12 days of action or as part of PWDA’s campaign or as part of any other thing that’s going on, then do another one. And what you need to do in that letter is you need to emphasize what the impacts of this are going to be on you, because we know that these impacts are not going to be felt equally by everyone.
For example, one of the first things that jumped into my mind when I thought about this new requirement about treatment that alleviates or whatever is how impactful this is going to be on the women in our community. Because we know how much women struggle to get taken seriously by their doctors, how their conditions are often, or conditions that primarily affect women are often deemed as being less serious or more treatable, and how there’s often a higher threshold applied to women before they’re considered to have.
substantially reduced functional capacity. And we know that’s already happening in how the NDIA is making decisions. How much more so will that be the case? That’s just an example. Similarly, you know, for people who, you know, have any, you know, experience as part of the LGBTQ community, the idea of having a block funded, potentially religious charity deciding what your supports look like, this is horrifying, right? And so I think we need to really
dig into the specificities of what this is going to look like in particular people’s lives and really get those stories out there to your local member, to all six of your senators, two of them if you’re in a territory, and then to our shadow Minister for the NDIS who is Melissa McIntosh. Make sure you include her in and for good measure go and blow up Mark Butler’s phone and email as well, know, can’t, can’t hurt. But I think those would be the targets that I would be suggesting that everyone do.
If you have it in you to make a submission, then absolutely do it. You can use the letter that you wrote to your MP as your submission. It doesn’t need to be a big smart thing with, you know, heaps of references and numbered paragraphs. You can just send that story that you wrote to your MP in as a submission to the inquiry and stay in touch with the other disabled people in your life. We are entering a dark period where
we, a lot of us are going to lose supports. And for those of us who retain supports, it’s going to look very different and frankly, it’s not going to be right. So that solidarity that we have as a community, that support that we give each other is going to be so much more important. And so this is the time to be building out those networks of disabled people in your local area, starting to check in on each other, starting to think about how you can support each other, starting to think about what
life is going to look like in a quite different world, but in one where we will still have each other and we will still have our networks of support. And I think just finally, I would remind everyone that our community is so, so strong and we have so much power in the lives that we have lived and in the stories that we have and in what we have done, just in some cases to get out of bed, to cook a meal.
to show up to work on time, we are constantly overcoming these massive obstacles. And I think the government is about to find out that we are not people who are just going to sit down and let our rights be taken away, that we are people who are going to firstly look after each other, but also people who are going to put up a hell of a fight.
Megan Spindler-Smith (48:28)
I think this is so important what Steve is saying is this is a time for our community to come together. It is a time for us to support each other and that’s all parts of our community and I think that is so important.
every single voice matters and the diversity of our community and the way we approach things differently is going to be important because there is no just one way that we’re going to be able to hold a mirror up to this Bill and a Bill that is one size fits all isn’t going to work for us.
Dr George Taleporos (49:04)
Any final words of advice to our community?
Megan Spindler-Smith (49:09)
Don’t say no to the support that you absolutely deserve right at this moment and what I mean by that is
If friends, if family, if DROs of course I’m going to say that, but if, if organizations are available to provide you support right now, take it. If you are feeling anxious, get support, reach out, ask for help. Know that you don’t have to do this time alone.
And remember that you deserve to have what you need and your voice heard in this moment in any way that works for you. Because the way you do it is absolutely right. And no one else can tell you that otherwise.
Dr George Taleporos (49:52)
18
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 633
Skye?
Skye Kakoschke-Moore (49:53)
what Megan said, just don’t be afraid to ask for help. There’s no shame in that. No one should be expected to try and understand this and fight this alone. And you won’t be. There’s a huge whole community that is ready to make sure that whatever is coming next, that that process includes the voices of people with disability.
Dr George Taleporos (50:15)
Stevie?
Stevie Lang Howson (50:16)
Yeah, I think I want to address what you said earlier, Dr. George, because last night when I was also awake in the middle of the night, I was having similar thoughts to what you described about maybe it is actually just too expensive for me to have a life. And what I want to say to every other disabled person or every parent of a disabled kid or person who’s listening to this on behalf of someone that they love, that every single one of us, we deserve everything that we need.
Do know who doesn’t ask if they’re costing the country too much money? Gas companies. You know who doesn’t ask if they’re costing the country too much money? It’s people who are avoiding the taxes. Who doesn’t ask whether they’re costing the country too much money? I could list through a whole range of them.
are about priorities and our lives and well-being, our quality of life, that is a priority.
And we all deserve the support that we need to live a good ordinary life. And I lost track of that at like 3 a.m. last night. It was genuinely spiraling. And I’m sure that I’m not the only one. And it was really affirming to hear, George, that you said a similar thing because it feels emotional and it is really hard. But that’s what they want us to think. And that’s how they want us to feel. And let’s not give into that because we have fought for everything that we have, including the NDIS has been fought for by disabled people.
who knew that they deserved better. And so we need to stay strong in that tradition that we deserve what we need to have those good lives and no one can tell us otherwise.
Dr George Taleporos (51:46)
Stevie, Skye, Megan, thank you so much for the work that you do, for your advocacy, for the support that you provide. And we’re going to need all of us to work harder than we ever have before. And so look after yourselves and look after each other. Thank you for your time.
Stevie Lang Howson (52:06)
Thank you.
Megan Spindler-Smith (52:07)
Thank you.
19