Submission 2664
Submission on the NDIS Amendment Bill
I do not support this bill.
I’m a young Australian person living with mul9ple disabili9es, currently supported as a par9cipant in the NDIS, and I’m wri9ng this submission because I am deeply saddened and shocked by the changes suggested in this bill and I hope that the government will reconsider and not move forward with it. It will detrimentally impact the lives of so, so many Australians, including myself and my loved ones, and does not serve the community.
Becoming disabled has completely changed my life in the last decade – to give you a picture, I used to work as a nanny for young children, I trained and worked as a florist, I loved volunteering for community events like charity fun runs and fundraiser market stalls. Living with mul9ple, complex disabili9es has completed redefined my life and the lives of my loved ones – I’m not able to shower on my own, I can’t prepare meals or clean my house, I can’t just drive somewhere when I need to, I plan my whole week around one appointment, I wouldn’t be able to aHend even the limited number of community events I can go to without a support worker having to inves9gate extensively whether it is actually wheelchair accessible. Even wri9ng out this document I would not have been able to do without support, and I oJen find it very difficult to engage with many of the government’s policies and decisions around disability because of the inaccessibility of these processes, like giving such a short 9meline for this inquiry (when it was finally offered at all). Support from the NDIS in the last two years has been a lifeline for me, and for those around me. There are many issues about inefficiency and taking advantage, but they are all ones that need more aHen9on and funding to solve, not less, and they are all at expense of disabled people, so any aHempt to remedy them should be planned with disabled people and should be about best mee9ng their needs.
This bill is proposing to reduce something that is already not enough and is already too restric9ve and exclusive to help most people who need it. This bill would strip away our society’s support for some of the most vulnerable people in our society without any jus9fica9on. I don’t think that anyone wri9ng this bill truly understands how it feels to be vulnerable in the way that disabled people are every day in this society. I desperately hope that the government will listen to these submissions from people who are actually impacted by this kind of bill and will rethink their approach.
I’ve gone through the proposed changes and below I have wriHen out my concerns and some of the main ways that the bill will impact me and people like me.
Legal defini8on of “func8onal capacity”
I am very concerned about the idea of 9ghter legal defini9ons of func9onal capacity being introduced to ‘reduce access’ to the NDIS, which seems to be priori9sing the ability to standardise and cut costs, rather than being based on what best serves the needs of the community involved, which is disabled people. Disability is complex, and a lot of people’s needs don’t fit into simple boxes that can be assessed by a standardised test without taking any context into account. Many disabili9es, like mine, are very dynamic and my capacity changes day to day, oJen based on the complex interac9ons of my condi9ons which are already not taken into account properly by the current system, and this looks like it would be making that even worse.
During the process of the tribunal review when I was first trying to get access to the scheme, I was constantly shocked by how oJen my medical and disability needs were being assessed and discussed by lawyers, and not relevant professionals who understand health and disability from their actual
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training. This new system sounds like it is trying to make it an even more legal focused system when it shouldn’t be about that. It shouldn’t feel like being taken to court over whether you have the disabili9es that mul9ple medical professionals have said that you have – that’s a flaw in our current system that this bill is making worse, instead of fixing.
Automa8on
On top of this, the idea that we are trying to automate many parts of these processes is truly scary. You are developing tools to suit the budget deadline proposed, not based on the amount of 9me and tes9ng that would be needed to develop a tool that works as intended and won’t cause harm. Rolling out automated systems just to cut costs has never worked before, it actually costs people’s lives, and intending to introduce these automated systems with no way for us to appeal its decisions cannot be jus9fied as being in the best interest of disabled people, it is blatantly cuVng corners for convenience and budget despite how much harm it would cause. I can tell you as a disabled person that every single automated process that I have had to interact with as part of accessing support in the last decade has had issues that have had to be corrected by humans, oJen with extensive processes of calling and talking with people and sor9ng it out, and oJen cos9ng not only money but also increasing my pain and fa9gue and impac9ng my access to supports. There is no way that the government can create and roll out a new automated system in just a few years that could handle the complexi9es of living with disability. Having an automated system and no way to appeal decisions made by automated, standardised tests is a truly cruel thing to do to try to cut costs, instead of improving the staffing and training of staff, which is employing Australian people and giving them skills, so that they can be more efficient and be able to cater to the needs of disabled people.
Link between supports and “eligible impairments”
Narrowing the defin9ons of how ‘directly’ a need has to come from a specific impairment is not reflec9ve of the complexity of human health and disability and is just again blatantly based on making it harder to access the support we need, not based on the needs of disabled people or most informed, whole-person approaches to care. There are so many things that help me every single day that are not specific to a singular element of my condi9ons and that can’t be defined in a narrow, medical way. I have mul9ple complex condi9ons that impact each other, and it is crucial that support for disability is able to take that into account – especially with condi9ons like mine where an awareness of one actually fundamentally changes how we handle the other, so I can’t just only explain my needs based on one specific impairment at a 9me without being able to demonstrate how they overlap. This proposal seems to want to be able to dis9l down all these separate liHle parts of someone’s diagnoses to only ever talk about one thing at a 9me, but that’s just not how human bodies work and it makes no sense. Every OT and other medical professional I’ve seen has said that the flexible solu9ons are the ones that really work, and that a full picture is essen9al to actually be able to work on any par9cular element.
Con9nually narrowed defini9ons of what counts as a support just keep making it harder and harder to find things that actually work to help us live with disabili9es. Narrowing this defini9on is also only going to make it easier for us to be taken advantage of by companies that charge absolutely immorally inflated prices for “disability” specific items that are not worth that price.
Submission 2664
“Reasonable and necessary” defini8ons
It is truly appalling that this bill is proposing to replace the object of the act to “provide reasonable and necessary supports” to disabled people (in 3(1)d) to instead say to provide “supports that are reasonable and necessary, so far as is consistent with the financial sustainability of the scheme.” This part of the Act is outlining the goals, and it is so transparently ableist that you cannot even state that the goal of the NDIS is to support disabled people without a proviso that its only if it is not deemed financially unsustainable by the government. I watched some of the poli9cians talking about these changes and saying that this was about trying to make the NDIS sustainable so that future governments who might be even less welfare-minded won’t be tempted to cut it more, but this is just doing the exact opposite. This is just building in the ability to cut the scheme more and more, to slash funding with no considera9on for how it will harm disabled Australians, because you are wri9ng in to the act the fact that financial sustainability can be priori9sed over our lives despite any detrimental impacts. This does not protect the act, it does not priori9se the needs of the people of this country, it does not help disabled people, it does not make the NDIS more efficient or protected from fraud, literally all this does is make the very purpose of the scheme condi9onal on a subjec9ve financial considera9on.
Ministerial powers to make support funding decisions
I don’t understand how it can be jus9fied that the a government minister be given the power to make decisions about how different supports are funded. This is giving someone with no training in medical fields, health, disabili9es, or anything relevant to this, the ability make sweeping cuts to categories purely based on the financial numbers and an external perspec9ve that is a very zoomed out view of the numbers, with no considera9on of any individuals needs across the different categories. The different categories for funding, though very necessary for all different types of disabili9es, effect different people’s disabili9es differently. CuVng the overall spending in one category of supports effects someone with blindness or with limb difference or with intellectual disabili9es, etc, very differently and you can’t properly account for that as a poli9cian making that decision at a macro level.
People with training and lived experience are the ones who understand how these categories operate – for example, cuVng social and community access is not just cuVng access to community spaces for social wellbeing (though that is also a completely valid use of funding, because that wellbeing is crucial to our lives, and we need that support because the world is not accessible and I have just as much right as anyone else to joy, if I want to meet up with a friend or get a haircut, or whatever else, especially in a world that is so inaccessible to me), but also means cuVng our ability to get groceries, or go to appointments, or get public transport, or go outside for our mental health, because support workers fall under that category. Supports are oJen not just for one thing, as this is all interconnected, and people who live and work in this space understand that. Someone who would propose and support this bill very clearly does not understand that and should never be given the power to arbitrarily decide to cut funding to these supports.
Deciding where funding should be allocated to best meet the needs of disabled people is simply not the same job as that of a poli9cian, even if they’re minister for that por`olio. The minister’s job should be to advocate for securing the most possible support and funding for the people whose needs they represent, but with the way that budge9ng is done now it seems like their job is oJen to offer up what can be slashed to be most convenient across the board. That seems like a fundamental
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conflict of interest to make it so that the person who is responsible for concluding how much money is needed in their sector, who has the express goal of reducing spending, can also be the person who decides what supports are really needed or how much seems like too much to spend on a par9cular area, with no medical or disability-based jus9fica9on needed for those decision and no appeals process available to those who actually are trained to work in this space or to the disabled people whose lives are impacted by those decisions.
Plan assessment processes
Disabili9es like mine are dynamic and change over 9me, and the system should be designed to respond to and cater to the needs of disabled people, including the ability to change and reassess the plan as our needs might change. This is only making a too-restric9ve process even more restric9ve. The idea of limi9ng reassessments and imposing calendar structures is only designed to minimise the workload and staffing needed to run the system, and not reflec9ve of what people actually need to best support us or to actually be the most efficient. For example, I have been wai9ng for over a year for my plan reassessment which was supposed to include assessing a prescrip9on for a wheelchair. It involved over ten hours of OT work to write the report, many visits to different providers to try op9ons and for the scrip9ng to be done, and all of that work is possibly now just going to have to be redone (and hence paid for again), and I’ve been having to use various measures in the mean 9me because I am s9ll going without that necessary equipment for my disability – all because my original plan didn’t include what I needed for this new wheelchair and the process of applying for it was grouped in with the annual plan reassessment and that was rolled over instead and no one can tell me what is happening with this over a year later. The bill is proposing many things that would make this exact scenario infinitely worse. We don’t need less plan assessment processes or less flexibility, we need more. It is terrifying to live in a constant state of uncertainty and worry about what your funding will look like in the next year because you know that decisions can be made and handed down to you with no ability to explain your circumstances, and with no considera9on of how your use of your plan in that arbitrarily set calendar year is dependent on other NDIS services coming through properly.
Removing the emergency change of circumstances processes is also very dangerous and will only mean that disabled people are leJ without support they need, which not only causes their circumstances and condi9ons to worsen dras9cally but can be literally life threatening.
“Permanence” and treatment expecta8ons for access
It is not a reasonable or accurate reflec9on of how disability works to expect that disabled people can or should try any possible “treatment” before they’re considered for access, without any considera9on of the financial barriers to accessing it or the other risks of that treatment, especially for people with mul9ple and/or dynamic disabili9es. With these changes, people like me would probably be denied access to the scheme because we haven’t done every single possible thing that could be tried for one condi9on if considered in isola9on even though that is because it is not medically possible to do those things because of other (comorbid) condi9ons.
The applica9on of defini9ons like these new ideas about permanence (or the other issues like func9onal capacity or the direct link between support and one impairment) are exactly the kinds of
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nuanced issues that are especially scary to be sugges9ng will be combined with automa9on and standardised tes9ng.
I hope that the government will take these submissions seriously and reconsider this deeply harmful bill. The NDIS is so important, for disabled Australians and their families but also for the whole economy – for every 1 dollar spend in the NDIS, 2.25 dollars are returned to the economy. A significant number of people are employed through or because of the NDIS, across direct NDIS staff, as well as support workers, support coordinators, plan managers, allied health professionals, and a vast array of other professionals in this space. There are also so many disabled people who have been able to recieve the support they needed through the NDIS to then become meaningfully employed, and have therefore not had to require Centrelink payments. This bill is proposing cuts, especially to social and community access, that would trap disabled people in their homes (or worse), but just because you can’t see us doesn’t mean we don’t exist. CuVng the NDIS funding is not going to cut the needs of disabled people – the need will s9ll be there, and it will just be dispropor9onately put onto all other systems that are not appropriate, prepared, or funded for that. This is known and documented by disable people and professionals in this space but isn’t being acknowledged or accounted for by the government or by this bill. Disabled people who aren’t supported with adequate care are forced into hospitals, which are already over-capacity. Disabled kids who aren’t supported then create demands on teachers and fellow students who can’t help them, and everyone’s wellbeing is impacted. Disabled people who aren’t supported with tools appropriate to their needs can’t access employment and just end up falling back on other welfare systems anyway, without the ability to save or work towards any long-term goals. Disabled people want support because we want to be part of society – we want to improve the world around us. As a society, we pay taxes because the en9re purpose of living in a community is collec9ve care – if one of us is struggling, then we as a whole are struggling. A thriving, well-funded disability support system is a backbone for so many other aspects of society to thrive, and it should be the pride of our democra9c, modern society, not something constantly cut, disregarded, beliHled and scapegoated.