NDIS Submission

Please see below a letter followed by Appendix addressing some of my concerns regarding the Bill being promised to safeguard the NDIS for future generations. I apologise for any spelling mistakes, I was not sure I was going to be able to make this submission in time but have attempted to rally to get something in.

Dear Senate,

I think some of the people who hold positions of power in this country have forgotten what their job is. That they are elected officials, in a democracy. BY the people, FOR the people.

That their job is to represent everyone, not just the people with the means to be heard. Not just the people with the access to their ear.

The money, influence and power to ensure their interests are safeguarded.. No not their human rights upheld, their interests. Big difference.

It’s privilege. But more than just that, there is something truly wrong, when a country that is meant to be democratic in nature, lies to it’s people ‘for their own benefit’.

I wonder if they might feel differently if it was someone else making a decision that fundamentally changed their life, with no reasonable avenue to change it. Only for that same decision maker, in a position of popwer, blatantly lied, hid details, used smoke and mirrors while spreading a campaign filled with misinformation and fuelled by resources they could never hope to match…. to tell everyone it was ‘for their own good’.

Would it sit differently then?

My name is . I spent until my 30’s not knowing that the reason life felt so much harder for me than my peers was not because I didn’t try hard enough, or that I was somehow fundamentally flawed; but because like 20% of this country’s people, I am a disabled person.

You wouldn’t know it to look at me on the outside. I am fortunate to have a tertiary education, rung my own business, I’m married and a mother. There is privilege in my own story, and there is pain, and I am tired of having to cut myself open to prove it. I was missed, and I carry the scars, physical and metaphorical to prove it.

When I honestly look back, it is wild that I made it out alive. I almost didn’t and many sadly don’t. We have a greater likelihood, of dying by suicide. I know that now, but back then I didn’t. I didn’t realise that I would likely die twenty years younger. That I was 9 in 10 Autistic women who are survivors of sexual assault. That my under employment and health

conditions were not something I caused but all commonalities I shared with a whole

community of disabled and autistic people. One’s none of us should have to carry but do. I know that now, but then, I didn’t.

I just thought I was broken.

My one priority when I became a parent, was for her to have good self-worth. Because I have had to FIGHT for mine tooth and nail. I didn’t care what her job was, that she have friends, or be great at school. I wanted her to know she was inherently worthy, because from that, everything else would follow. Growing up in a society that did not accommodate my disability but taught me to hide it, mask it, fake it til I made it, stole that from me. And sure, on the surface, it looks like I ‘made it’. But it nearly killed me too.

I have friends in the disability community who have fought tooth and nail to live. Who continue to have to fight tooth and nail to live. Who know the pain, dehumanisation and invisibility that existed before the NDIS. They know what it feels like to exist in a society that does not embrace difference, but tells their children to look the other way and not stare. We are the country of the tall poppy syndrome for goodness sake; where if you are just a bit too successful, we will cut you down so you don’t get any ideas about making the rest of us look bad. only to then turn around and tell you, that you must have imagined it.

Well what’s more messed up than that, is stripping people who already have a harder road just to survive; of their remaining human rights. To the freedom to choose where they live, how they are supported and even what treatment is safe for them and their body. Which somehow, this government has made sound like a luxury, with how effective their marketing campaign has been. But it is sadly what this Bill will do.

When you have a baby, you don’t typically picture raising a child with a disability. You imagine all the possibilities for what their future will look like. Will they look like you, or your dad. Will they be into sports or music. Will they be happy. I didn’t expect to need the NDIS. I didn’t expect that my child would either. I did recall thinking that if anyone were thrust into the role of raising a child with a disability, that parents who are both therapists would be better suited to it. Which may not be a typical future parent thought, but I had worked in the industry and seen the reality or at least what I thought the reality of raising a child with a disability looked like.

I had no idea. Despite having worked with disabled folk. Despite being one myself, although I still didn’t realise this was more than ‘health issues’. I had the privilege of observing but not feeling what it would be like to raise a child with a disability.

I worry for her future like all parents do. But I’m not wondering if she will be into sports or music, what career she will have or if she will be as tall as me or her dad. No now I worry about who will help make sure she has her rights protected if something happens to us. Who will stop her being exploited because of her vulnerability. I wonder if the NDIS doesn’t exist when she is old enough to live on her own, if that will ever happen. I worry what will happen for her when her father and I are gone.

I have friends who have worries that they will never hear their child say Mum. Who worry their child will die before them, in pain.

I have known mothers who sacrificed their own needs, wants and dreams to allow their child a few more years on this earth because no ‘system’ would have cared for them as well as they could, and mothers who couldn’t care for their child and had no choice but to watch them be institutionalised.

I am terrified of what the future looks like, not just for me, not only for my daughter but for all of us. As a university educated, allied health professional, with the privilege of being able to understand what is coming down the pipeline, I am terrified. I don’t know a disabled person who doesn’t agree that the system needs change, but this is not how you do that. This is not about the people inside or affected by this system. This is dangerous, and lives have already been lost as a result of these reforms. The impacts of the changes that will follow if this Bill is passed, will be catastrophic for so many.

I have been paralysed by overwhelming fear, unable to look at any of the noise about these changes, and would not have been able to make a submission if not for the extension. My fear is that nothing any of us say or do will make any material difference. That the pattern I have witnessed over the past 18 months, of the lip service for ‘more information and consultation’ has only given us delays, not an actual seat at the table.

I am scared, and I have seen the evidence with my own eyes, that the people in the positions of power to make these decisions are not doing them because of the words they spout but for other far less ‘honourable’ reasons. It’s a fundamental flaw with the current system one that I can’t see changing when the decision makers, the powers that be - make life changing decisions that are irreparable in the damage they will cause, not based off on the lifelong impact to the people, the system itself or even the country. No, these decisions are made with a 3 year time horizon. Because that is the election cycle. The decisions that will impact far more than a million aussies, are made based on how it will impact their chances of re-election, but the price, the actual cost, then impact and the scars, they’re life-long.

I spent from June to October last year fighting with everything I had to spare to reverse changes, and while I know it made a difference to my kin to hear or see another voice, from where I sat, it felt like it did nothing. Advocacy for me was a lifeline for most of last year, because it felt like hope. Like maybe just maybe if I spoke up, if we were loud enough, if we screamed the truth then the the people in power would have to see the REAL information they clearly had been missing and we would see genuine co-design to improve the NDIS. It’s what I wanted. Not only as a participant but as a provider, I was tired of watching fraud be blamed for the unsustainability of the NDIS. When I could see SO many easy ways for the system to be improved, more financially sustainable that would not cost the people it supports.

But, when I watched our attempts at media noise seem to go nowhere, as though there was some mysterious blackout on the ‘other side’, when I watched Public Servants lie in senate estimates and I watched NO one take any accountability for wrong doing I realised

• something. I had made an assumption that if these people in positions of power just knew more, they would make the obvious decision to do better and protect the vulnerable. That the words they spoke, had some semblance of genuine wish to work with the disability community. Boy, was I barking up the wrong tree. It took me far longer than I am proud to admit, to realise that they weren’t going to listen to my proof, evidence of misinformation, or explanations. That it was a case of David v Goliath, and Goliath had money, resources, and so much more power to make sure the decisions made LONG before I started trying to show them what they’d been missing were made. That this actually had little to do with disabled people, and everything to do with power and politics.

I must still have some naive hope left, because Im wasting my Saturday night trying to tell some bureaucrat, again, that this is not safe. That the harm here is beyond comprehension and that if this is Australia’s opinion of disabled people then I am ashamed for us.

My daughter and I became NDIS Participants right before they passed the Bill in 2024. I had tried asking at every avenue I could, for more than 6 months for help, and we were hanging on by the skin of our teeth. I thought finally, FINALLY we will have some help to not need to keep putting ourselves in financial hardship just to try to access supports. Finally there is a light. I was wrong. Because again, I made assumptions about the system. Assumptions that are likely due to my disability. I assumed that the story I’d been sold, about how fortunate I was to live in a country with social welfare, who if I followed the rules, worked hard, and did the right thing if, through no fault of my own i found myself in need, my government would make sure I was okay.

But that’s not the Australia we live in anymore. Yes, the NDIS has been a lifeline for my family, one we desperately need, but it was not easily accessed. I wasn’t ’helped’ when I needed it, I was helped after we hit crisis. And even then, we weren’t given the level of help we needed, we weren’t believed. We had to gather evidence and fight for every scrap of help we receive. Now maybe it’s my own privilege that I believed the story in the first place, but it’s the same story that’s being sold to everyday Australians now. The folk who aren’t in need today of the NDIS, but could be tomorrow. They are believing that there’s no other way to save it. That this is ‘for everyone’s own good’.

These changes will result in deaths. These changes will cost the Australian people MORE over time. These changes already have done irreparable damage to our community. I am traumatised by the process of becoming an NDIS participant, and having to prove my needs only to now be told I have the wrong disability to deserve support. That the value I have to offer is not worth the cost of supporting me. That somehow my life is less valuable than another more ‘able-bodied’ one.

The irony that more than 70% of entrepreneurs are neurodivergent is not lost on me here. The lack of understanding that difference is not less - it is part of diversity. That yes, disabled folk might need support, but that much of that support is a by product of the lack of inclusion

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In our society. That if we did this better as a whole, it would be cheaper. That if you considered, for an moment that people who think differently, move differently, hear and see differently, and have had to fight tooth and nail to live - might just be the most resilient, innovative, creative people I’ve ever had the privilege of knowing. That value, can be measured in more ways than a figure at the bottom of a balance sheet.

It is less safe to be a disabled person in this country, than it was before National Cabinet decided it had a financial target to meet. The NDIS has become one of those ‘hot button topics’ you don’t touch at BBQs akin to religion or politics. Somehow its now okay for every man and his dog to weigh in and debate my human rights. That we hold disabled people to a higher standard than non-disabled people, but judge without the understanding of what it’s like to not be able to do these things without help.

There is an assumption that the decision to earn an income, access healthcare, access an education, to live independently is the same. But it isn’t. It’s like the picture of equality vs equity with three people trying to see over the fence. We do not have the same resources, access or barriers. We aren’t standing on even ground. Sure, tax payers dollars need to be used with care, but to assume that disabled people aren’t also tax payers is false. To assume that this Bill is going to save the tax payer money in the long term, is also false. You only have to see how short sighted the decisions here are, to realise the gap will widen, the cycle of inaccessibility will continue and disabled folk will only be more disadvantaged as a result of this Bill.

The NDIS was revolutionary, and it was not implemented with care. That is the decision of multiple governments and public servants that have come before now. A system that was not safeguarded and cost too much is a system that needs reform. But that reform is currently not only set to hurt the people it was meant to help but to breach human rights left right and centre. As the country that introduced the NDIS just over 10 years ago, and did so with pride, championing disabled rights, this Bill ought to be a source of shame. We had an opportunity to change how disability was seen in this country. And for a brief time, it seemed possible. We were visible in society, for the first time. But when given the choice to either support progress and find a creative or innovative way to make the NDIS self-sustainable, they chose instead to demonise disabled folk, because it would be an ‘easier sell’ while still retaining power. To pass on the costs, and the impacts of this decision to the next government, because their 3 years term would be done, and the next 3 year election cycle would be the focus.

My child will have passed important life development points in the next 3 years, and they won’t wait. As a parent and therapist, I can’t look at this through a 3 year lens. I have to look at the long-term. The impacts of supporting someone to toilet independently have dividends that pay return for decades later. Sadly, if this Bill is passed, I cannot see how, the lives of the 20% of the population who live with disability in this country won’t wear the price for far more than 3 years. The scars, the cost, the real life impact of this, will be lifelong. The damage done to how Australians see the NDIS and disabled folk is already irreparable.

So will it be worth it? It’s already cost me 30 years of not knowing who I am.

• Multiple chronic health conditions because I internalised all the shame and dysregulation I was never safe to show. It’s cost me my independence, friendships and more money than want to count, its too upsetting. It’s cost my mental health, my business’s downsized multiple times, my community’s access to my services. It’s cost my daughters access to mainstream education, and scars she now carries. Most of all, its cost my hope, my faith in my country. And now, you want to take more.

How much will be enough? How many lives have to be lost? How many people harmed for the cost to be worth it?

How will the government pay for the thousands needing welfare because they can’t work? How will they handle the increased deaths of families who have no hope left that it will ever get better? How will they meet any targets on closing the gap?

They won’t. Because it was never about any of that.

If you would like to actually make the system sustainable, better, less expensive. I have ideas, and people far smarter than I do too. But unless you are actually going to do something about it, be transparent in the reasons why or why not, and listen to the people who actually understand the impact of the decisions this bill will have, then don’t bother. I don’t need to be used as a tokenistic example of ‘representation’, only to have my hopes be for naught.

I don’t think my heart can take it.

Appendix

Schedule 1:

Defining functional Capacity: The NDIS has always been founded on the impact to someone’s functional capacity, its why OT’s prepare Functional Capacity Assessments. There has been a shift from within the Agency to requiring more robust diagnostic information of which I cannot find any official legislation to support, but must assume it is based on internal documents and operational guidelines.

I have significant concerns about how the definition of functional capacity is made. The reason the initial Act is not clearly defined is because the concept of functional capacity varies not only from disability to disability but for individuals. You can have the same diagnosis and not have the same experience of functional capacity.

It is poorly understood by the wider community, and even in parts of the allied health community, something I spend much of my time educating about in my professional work. The concept of a ‘standardised assessment’ that will capture someone’s functional capacity is offensive to not only the disabled folk they plan to assess using it, but to the professions who have dedicated years of training and ongoing upskilling to be able to accurately assess functional capacity.

I have been an Occupational therapist for more than a decade. The concept of assessing someone’s functional capacity based on their ability to intrinsically perform an activity, is reductionist, and will result in harm. The reasons for which are far more than I have the capacity to write in this submission tonight.

There is a difference between Ability and Capacity. You can do something but not be able. You may have a skill but not be able to access it unless you have the right environment, supports, access to skill development and resources. The concept that this would not fluctuate is also wildly reductionist, to the human experience. There is no way to guarantee that the assessment you are proposing would in any way accurately assess someone’s level of need based on use of a tool. My assumption is that this would somehow be incorporated into access assessments, and be unlikely to be completed by a appropriately qualified health professional - not dissimilar to the Agency’s move for Support Need Assessments - the thing they use to decide how much funding support you deserve - is not being completed by qualified health professionals.

It is as offensive as suggesting that Google is a suitable replacement for seeing your GP. And the harm that will follow, I actually cannot conceive because the NDIS this Bill proposes is so far removed from anything we have yet seen. It is worse than the block funding prior to the NDIS. It’s the illusion of care, so the public can feel comfortable about ‘helping the poor disabled folk’ while actually reducing human rights, choice, autonomy, and genuine support needs being met.

I recently participated in the NDIA participant engagement for the Support Need Assessments. The process of which was so triggering not only as a disabled person but as someone who has worked in this industry doing these assessments for years. I could see how much nuance, context and detail was being missed. The idea that this was strengths based was also a joke. I left in tears, dysregulated for days after, because of the assumptions made, one that this change to ‘functional capacity definition’ will allow to continue, if passed. That if I CAN do something, why am I not, as though somehow I am trying to ‘wrought the system’ despite the fact that I want nothing more than to not need NDIS support. After 2.5 hours we ceased, and we were only halfway through the assessment.

Unscheduled Plan re-assessments:

Most of the reason I’ve seen for unscheduled plan re-assessments has been because the plan was woefully inadequate or inappropriately provisioned for someone. The funding was put in the wrong buckets, the planner didn’t listen, the evidence ignored, or they did not have the skills to be making the decisions they were being tasked with.

I have worked in other insurance schemes. None more inaccessible, hidden behind smoke and mirrors or difficult to navigate than the NDIS. If I had a client under other schemes, I could call the case manager, speak to someone who has a qualification and has practiced as a health professional, and talk with them about the need, the context and have it approved or declined on the spot. If declined, they would tell me why, what evidence they needed to consider it and the quickest least expensive way for me to provide it. They didn’t want to pay me more time than necessary, and quite frankly I didn’t study to become a report writer.

That is not the NDIS process. I didn’t ask to write 80-90 page reports. In fact when I entered the NDIS space in 2022, I was shocked to discover the agency did not have a form, a list of criteria or even a template for exactly what information they needed. Unlike DVA or other government funded schemes like the Medical Aid Subsidy Scheme in qld, I could not call an advisor and talk with them. I was not able to ask someone who shared my qualification what evidence was needed and if they thought there was another more effective or efficient way to do it.

No, the NDIS said, tell us this stuff, and when we reject it, give us more evidence. And so we did. We added more and more evidence to try and find a way for our clients to be supported. But what happens is, instead of actually getting to do the capacity building or therapy or independence building work we got into this to do, we spent all our time writing reports, and proving disability. That never got read, and was ignored. It has got to the point where I would write my reports to a level that if they had to go to ART, they had solid evidence because the NDIS was getting it wrong so many times, in a ‘bid’ to save money.

I think they hoped that if they made it so hard people would give up. But they underestimated the actual need here. Perhaps they thought that if like Centrelink they made it hard, people would not be bothered. But this is life and death, this is life feeling worth living or meaningless for us. It is not something we have a choice in, so we persisted. And persisted. And persisted, wearing the trauma for all to see.

Let me tell you, the shock I had when I finally became a participant and sat in a planning meeting of my own, articulated clearly my support needs, knowing full well the legislation only to be told that my own self report was not enough. That it didn’t matter if I told them, if someone else didn’t write it in a report it didn’t mean squat. They sent us off to struggle for another year, instead. I watched my functional capacity decline, I watched my child burnout and not be able to return to a formal education setting since. My mum burnt out and now, 2 years later, my husband is burning out in front of me.

You don’t have too many unscheduled plan reviews because people want more money. You have it because the Agency has been doing a poor job of writing plans from the start.

Yes this is an insurance scheme but it is also about permanent and lifelong disability.

The concept that someone can’t improve is ableist but so is the idea that if they are doing better we strip them of supports. Often they are doing better because of the supports, and its about finding the right threshold for it knowing that life will happen, things will change and their supports need to with them.

Can you imagine if we expected things to stay the same? Told a child they couldn’t have new shoes even though their feet had grown? People are not living life in a glass box, they are impacted by the world around them. The other reason you have unscheduled plan reviews, is because the way plans are written do not allow for real life. When things go sideways, and you need more support and you can’t access it; people end up admitted, accidents happen, harm occurs. This legislation if passed will only cause more of it. There are ways to improve this, that don’t result in ‘block funding’, ‘standardised assessments’ and treating disabled people like criminals for needing help. They don’t need to block unscheduled plan re-assessments, they need to fix the reason for them.

How Do You Ever Make Progress if You Are ALWAYS Under Threat of Losing Funding and Therefore Access to Live Your Life?

How do I run a business if I am constantly worrying about how my funding will be cut and I will have to close up shop? How will we pay our mortgage if I can’t work and the process of accessing Centrelink is not accessible as a result of my disability. how will I get help to do that, when my supports are cut?

Riddle me this? How do you live when the government is constantly threatening to pull the rug from under you? I’ll tell you, You don’t. You stay permanently in a state of hypervigilance. you stay permanently fearful of when the next funding cut is coming. You can’t ever relax because even if you have enough to survive right now, you know the day is coming when they are going to try to take it away again.

They want the power to make decisions about funding to be able to change it if and when they need to. Sounds a bit too open ended to me, and a person who has watched the ‘promise’ and the ‘actual reality’ be so far apart it has actively caused me harm I find it difficult to trust that this won’t be the same.

If the government cuts our access to social, economic and community participation I will go back to what things were like a year ago. Before our plans actually met our needs. Currently I am still under funded but my daughter is adequately funded. We make do with what is there because I do not have the energy to run a business, parent, try to keep up with therapy appointments, support worker shift changes, attend therapy appointments, and look after myself (which I am not doing a great job of) and fight for more funding. But if you cut it, it won’t be enough to get by anymore.

I will go back to sitting on the lounge room floor, frozen on my day off with my child. Where we mostly watch TV, and I try to hold it together until I go back to work for respite and to earn an income. Except now we don’t have access to safe education, so I can’t do that. Come next year we have to homeschool, because there is insufficient support at school to meet her needs - so, instead of being able to go to the library to read books, access the grocery store to learn about shopping and budgets and recipes. If we are lucky to keep our funding we will be stuck at home. Where she loses access to social interaction with her peers - because she doesn’t go to school and these outings are her only access to other kids.

Where I slowly lose my mind because my Saturday supports is the only time I get to be just me. Not a parent, not a business owner, not a therapist or coach or wife. Just me. And I’m usually running errands for everyone while we do. Life needs to be worth living too, and this is being marketed as ‘coffee and cake’ but its said from the perspective of someone who has the privilege to be able to get in their car and just go for coffee and cake. Not the person who can’t get out of the house without assistance.

remove reasonable and necessary:

this was and has been essential in ensuring that the only oversight that participants have with ART allows for decisions to be overturned. This is the agency’s way of reducing our access to a second opinion, which is already such a long, drawn out and painful process I have multiple participants who have not pursued their right to review because they cannot sustain the trauma the process entails.

This allows for human rights to be upheld. It allows for my disability to be different to the person across town with the same diagnosis. It allows for humanity. The agency says that the definition was broadened of what this means. I disagree, I think it has always meant the same thing, but there was never enough structure to support its use. They don’t have to give themselves so much power to still ensure safety of the scheme. The change of reasonable and necessary to NDIS Support - is based on a mysterious list we still don’t have final word on from the Act that was passed in 2024. The NDIS Rules that were meant to have states agreement before being put into place.

Can we please NOT continue to allow these vague promises of legislation to be confirmed at a later date to be passed through to law. Saying oh, foundational supports will do that, but having no foundational supports in place, no detail on what that will look like no infrastructure on how it will be rolled out, and with less than half the funding - It is like signing a blank cheque, and so far, the only people paying the price are the disabled community and the people who support them.

This also asks to change ’effective and beneficial and regard to good practice. Again, this was deliberately vague because it allowed for disabled people to make decisions for themselves. It allowed someone to have dignity of risk, to actually follow the law around capacity and decision making when it came to how their care is done, while still considering what is appropriate for the tax payer to fund.

This Bill, is asking disabled people to hand over their bodily autonomy to the minister. For the exact same people who have demonised disabled people to push political agenda. Excuse me for not wanting someone else to decide what therapy is the best fit for my child. Excuse me for knowing that clinical trials, published papers, peer reviewed evidence is not the only way to support people. And if these decisions were being made by clinicians who know the person, are in front of them, can understand the full context then maybe you could make a better assessment, but they aren’t asking for that. They are asking that the Minister who has never met me, my child or knows anything about me will make decisions about what access to supports we are allowed to have.

Evidence should matter. But it is not the only thing that should matter. So should individual circumstances. So should lived experience. I say that as a clinician who understands the value of evidence based practice, but also understands that there is no one else who knows what it is genuinely like to walk in another’s shoes. Can there be things the NDIS won’t fund, yes. Does it need to be more restricted, no. I think you can safeguard how and what its used for in more appropriate ways that actually allow for how each disabled persons needs show up. Stop treating us like we are all the same, and leave our reasonable and necessary, beneficial and effective and of good practice alone. Removing it is likely to harm the disabled community and benefit the Agency’s bottom line.

Family Support and Parental Responsibility:

I am so concerned about this. We have already seen increase in filicide as a result of NDIS legislation changes. I cannot see anyway that this doesn’t risk that further.

I am a mother with a disability to a child with a disability. I care about my child, and I need help to care for her so I do not lose capacity myself. Firstly let me tell you that being able to even type that is not easy. I WANT to be able to do this without help. I wish I didn’t need help and it has taken a long time to accept that I do need the help.

To increase what you expect parents to do, while simultaneously cutting their supports, based on a new framework plan, reducing social and community participation and then saying ‘you aren’t needy enough’ - families will crumble.

I see the risks of more kids in care, more harm to children, more family breakdowns. Please tell me how do you stay out of poverty if through pure luck you have a child with additional support needs? If the education system doesn’t work for you? Then you have no available time to work? How do you work for yourself from home if you have a child with medical needs? When do you sleep? Who helps if you don’t have any family or friends who have the skills to support your child? You can’t just go on a date night because there are no baby sitters skilled to care for your child.

What is the purpose or assumption of this really? It is not about duplication, they have already stated very loudly that the NDIS was the only lifeboat in the ocean. Is it that parents aren’t trying, because I only know ones who are trying desperately and are burnt out barely holding on. I do not see how this change is even needed. Especially when we currently have planners already suggesting children look after other children - which is what this was meant to safeguard against.

Please I beg you do not allow them to remove the foundation of the NDIS from it.

Plan Renewals:

So the memorandum makes it sound like the roll over of plans was always meant to be this way. It wasn’t meant to be, but when faced with ‘have a conversation with the agency that has gotten harsher and harsher and play Russian roulette with whether your plan is gutted’; or ‘accept a continuation’; we accept the continuation.

The number of participants who are actively fearful prior to a ‘review’ is not okay for a scheme meant to support them. Now they want to stop roll over of budgets, here’s why that’s harmful. My current plan and my daughters only work because we can roll over funding. This means we don’t cost the government extra tax payers dollars to look at it because when support workers are sick, if we couldn’t access a therapist because of waitlists or someone was away, there is enough budget to allow for the weeks where we need more help. It allows for the fact that my plan was under funded but because I didn’t use as much at the start I have enough now to keep going with a more appropriate level of support so that we can survive.

If that is taken away, and at the same time the access to unscheduled plan reviews is removed, what happens? People who were getting by now can’t; more people struggle and the ripple effects extend out into other systems. It costs more to pull someone out of a crisis than it does to actually stop the crisis from happening. I am living proof. If the NDIA had funded the support I asked for in my first plan meeting, than I probably wouldn’t need the support I need now. But because we have spent years struggling in survival mode, our overall capacity has slowly reduced.

And I am scared, for what that means for our future because these proposed changes are only going to make it harder for everyone. There’s no safety net to catch us. My question here is - Why stop rollovers, if the funding is never spent it goes back to the government coffers. Why does it need to be prevented from rolling over? If it returns to the government unspent, and appropriate safeguards are in place for what is funded or not, why does this matter at all?

Suspend plans: The agency is known to do surprise ‘check in’ and lie to participants that this will not impact their plan only for a plan re-assessment to have been completed and a slash in funding appear in their inbox. I’ve experienced this myself at least three times already as a participant once and twice as the parent nominee where ‘check-in’ calls were sprung on me.

Im concerned about the lack of actually following communication preferences, and how this may impact people who need support for calls.

If they can suspend plans around the re-assessment process, and the process itself is inaccessible and doesn’t accurately or safely capture support needs, how is this not just holding disabled people over a barrel insisting you will comply?

How do you plan or live your life under constant threat of plan cuts, when scheduled or ‘unscheduled’ plan reviews can be triggered, your plan suspended if you don’t comply and the system itself ‘somehow’ identifying by a system identifying ‘potential duplication’ with no disclosure around how.

define permanence with ‘all appropriate treatment’: I have significant concerns about this. I have witnessed access requests declined because all treatment hasn’t been completed but no detail on what else the person was ‘supposed to have done’.

What happens if the treatment is not one the person consents to? No help if you don’t jump through our hoops? What is body autonomy? There is a clause to say that beliefs are allowed to be considered but who decides what is or is not allowed to be an exception - this is supposed to have all states and territories agreement - again we still don’t have rules from legislation in 2024 actually complete. Let’s not sign a blank cheque again, because last time they put in ‘temporary rules’ that the agency decided on with no consultation, and then increased the powers of the agency to come after you for reimbursement if you didn’t follow the temporary rules.

• Treatment that can improve - people with disabilities can improve, and still have a disability.

• There is not enough detail about how this will be applied and harm not caused. The NDIS has already become a system where only those with means can access it. Can you afford the evidence required to meet access? Do you have the ability to access the system. To even understand the paperwork.

• It’s well and good to state that ensuring disabled people have access to mainstream services regardless of circumstance is the responsibility of all - BUT who then will actually ensure that? how will they ensure that? At the moment the only information we have is sitting under thriving kids which is a DRASTIC cut in support access for kids who are vulnerable.

Schedule 2: definition of NDIS provider:

The NDIS review did recommend that registration happen, but it also asked that it be made simpler, and more affordable. I am a small business. Being registered offers me nothing except hoops to jump through and additional expenses upwards of $10k. I don’t have that as a disabled person attempting to keep my business afloat with no price increase in more than 8 years. I have had to change business model because I cannot afford to stay if the prices don’t increase, and the Agency is now asking for more power in pricing. As a health professional I am already registered, subject to police checks and things I have to comply with.

As a NDIS participant I want the right to choose who I have in my home, who understands my family’s support needs and who is caring for my child. Registration as it currently is won’t = safe providers. It will equal providers with money to be registered. It means the mum of three who supports us would need to be employed under a registered provider. She would lose the flexibility she currently needs to work and raise her kids who also have support needs. Safe providers and registered providers with this system do not equal the same thing. If you only have people who can afford it - you lose the people who are in disability work because they have a heart, because its something they love and care about.

The same is to be said about what an NDIS provider or even an NDIS approved Support is. Inclusion policies are about making things more accessible for all. Yet we are then punished for accessing that same support. Mark Pietch gave an excellent example at the inquiry last year - he wasn’t able to claim the cheaper modifications he arranged for his mobility aid from Bunnings because it would have meant he was flagged for fraud. This sounds like the Agency is safeguarding people but it also risks actually making us more vulnerable to exploitation. It’s like weddings and cakes - if you ask for a birthday cake vs a wedding cake - same product the price is different. The Agency say they want to prevent that and then decline cost efficient supports that aren’t disability specific because we didn’t put the word disability in front of it.

It’s bureaucracy has gone mad, and the costs get blown out, none of it actually helping the participant or saving the tax payer money.

information gathering powers broadened: Information gathering concerns around our rights to privacy, and how information is used. I ran out of capacity to read this part in full but like any information gathering powers there are concerns about how it gets used. information to ensure fraud doesn’t happen, but will it stop there? This is also a bill being presented by the same government that proposed legislation to block FOI access. Am I skeptical? Perhaps.

retain records of supports or claiming for periods of time: Keeping evidence of claims sounds good in theory, but is the Agency also asking people with disabilities that often impact their ability to keep records to do so. At some point will the Agency actually become more simple to navigate? Will the agency provide more usable ways of helping keep that information? Will things finally become actually accessible for disabled folk?

Claims made in 90 days: Sure it might make it verifiable but as a person who has had participants tell plan managers not to pay, despite having signed a service agreement and then not turned up - only for me to have no way to be paid for the lost time or for work to be completed and then plan funds run out, and I’m left holding the bag, I find it hard to believe that this is about only verifying payments and not cost saving.

I’ve had employees not bill correctly, and only found the outstanding work unbilled outside of a 90 day period. This disproportionally advantages organisations over small business. Anyone who can afford an employee dedicated to billing. It makes it more viable over time for bigger companies to stay in business, and smaller providers to go out the back door. This then impacts participants access to providers of their choice, with the skills and knowledge to help them. It blocks people like me from staying in business, because I cannot access the support I need to work unless I remain self-employed.

Providers New approach to plan management: i wlil be honest, i skimmed this, with my capacity already reduced from how inaccessible the information needed to even complete a submission is. Please note that the Bill opted to criticise the plan management market after the same government cut the fees they are paid to do exactly that. i can see the need to ensure compliance, integrity and governance. i also am concerned about any example of commissioning that would impact the choice disabled people have over who supports them, including their plan manager.

Schedule 3: Pricing via legislative instrument: i vehemently object to the Minister having more power to make decisions over pricing.

This bill already indicates a lack of consideration for what the impacts to disabled people or the providers who are dedicated to ensuring safe practice is occurring. Instead it centres money, budget, fiscal targets, and power.

There is NO actual safeguard that ensures the NDIA follows its own legislation. In fact I have witnessed many times where they don’t. Dr George, well known disability advocate, pointed out that many of their operational guidelines directly contradict the legislation. While this is being experienced by the 700k+ participants and the providers who support them, we continue to observe not enough transparency, and no overseeing body, no accountability to when they are called out for wrong doing and no real assurance that they are doing the right thing.

June 2025, 73% of the time the NDIA was getting decisions wrong at ART. While the number of overturned cases has dropped, the number of people having to go to ART has risen by almost 90%.

FOI requests are slow, and my own required ombudsman involvement and was redacted.

The push to reduce people’s access to ART, reduced unscheduled plan reviews, ongoing lack of transparency from the public servants at senate estimates, and the blatant lies at last years pricing review and guide announcement indicate they have not demonstrated the care, consideration or governance to be safely handed such power. The very same people who have made it less safe as a disabled person in this country want more power over the decisions that impact our lives. Would you want to hand it over?

I ask where is Independent health committee pricing Authority report from last year and why has it still not been released. I can only assume it’s because it would have demonstrated the lack of transparency by the pricing decisions being made by the NDIA, and the Minister. It didn’t fit the narrative.

The NDIA will continue regardless of which government is in power. Disabled people are already living their lives under threat of funding cuts as a result of these austerity measures dressed up as reform. Our access to providers that actually meet needs is already under threat. If you take away nothing from my submission but this, please do not give the power to control disabled peoples lives to someone who will continue to change every 3 years. We derve stability, and decisions that can be relied upon, with consideration of what the Long term impacts are. Not more smoke and mirrors with politics and lack of transparency being dressed up as ‘for our own good’.

automated decision making within the NDIS: including protections and requirements for how decisions and processes are to be automated and for standard operating procedure instruments:

I object to any funding decisions being made by an automatic system. Let’s just consider, that the NDIA and the Minister was going to allow support need assessments that are part of new framework plans, to be rolled out without the ability for planners to fix mistakes the computer system made.

Of greater concern, is that they didn’t stop that change from happening, it was merely delayed. And it was delayed because information was leaked. These assessments were going to be rolled out without being tested safely on disabled folk. Without evidence to know if they accurately assessed people with disability of different types or when being administered by non-health professionals, is concerning. It was only delayed because advocates fought for it to be safeguarded first. The fact that these new framework plans and support need assessments were being sold to the public as ‘informing’ your plan but were actually ‘writing the plan’. The same plan that didn’t allow for humans to change it, is concerning.

The same people who designed Robo-debt have been involved in this. People died during Robo-debt and we still have no accountability for what happened. Now this isn’t about that - but what it does indicate that is of relevance to this Bill, is that, if you are in a position of power, and you do something like Robo-debt, there aren’t any major risks because no one has been held accountable. And if you are smart, and the people involved are, you will pass just enough laws to allow you to not ever be held accountable to how many lives may be lost. You will, get away with it hidden behind the power of being too hard for the little guy to take on.

I do not trust the incorporation of automated processes within the Agency that have any role in decisions about access, funding, eligibility or making assessments on supports. While AI is a useful tool, in this case, use of a computer to decide what is relevant, or even how it will be used, without appropriate transparency and accountability measures is too risky. This government has already demonstrated that they will not provide the true story unless pushed to do so. We do not have information given to us by the Agency, it is leaked, found in FOIs and dug up by people who have no choice but to keep going because it is their lives at stake. This does not have enough information to demonstrate how it will be done safely, proven and tested to not risk the lives of hundreds of thousands of disabled people, never mind the impacts to the economy as a result, then it ought not be signed into law.

Disabled people are not an experiment to be tested on to see if it works. Robo-debt might have seemed like a ‘genius’ plan to save the Australian tax payer money, and it cost more than it saved in the end. In addition to the lives lost. This looks far too similar. It risks lives. It is too dangerous and there is not enough open communication, transparency and actual information being shared.

If the NDIA, this government or the Minister have nothing to hide. Why are they hiding it all? Why not tell us what’s going on?