Submission 1566

Submission on the NDI Amendment Bill

Introduction/my connection to this issue

I am a disabled person with a recent NDIS plan. I am in my early 30’s and have a relatively rare, complex set of disabilities that have a genetic component that is only recently being studied in the medical and scientific literature. The management of my disabilities have meant I have been unable to work in a stable or consistent manner.

Before my condition deteriorated, I worked my way through university gaining a double degree and graduating top of my class. I am highly educated, creative and driven. I have a background in the tech startup world as well as extensive experience in community services.

The NDIS has been my life-line and it was my hope that with support I could return to my career. I am deeply concerned with this Bill and the proposed changes, particularly the harm they will cause myself and the disability community as a whole.

My overall position on this Bill

I have serious concerns and do not support this Bill. Here are some of my reasons:

• The proposed changes largely do not solve the main issues with the scheme, instead they are overly concerned with cost-cutting and will result in harm for myself and other disabled individuals.
• There are other ways to make the scheme sustainable, if that is the primary goal, that also better deal with the issues within the scheme (mainly the NDIA itself) and that do not punish participants.
• The proposed changes remove both individualised care and choice and control for participants which will cause real harm. These will break the promises of the NDIAS as it was initially created.
• Granting the NDIA new powers to investigate and fine people is terrifying for an agency that is already filled with incompetent people who do not have the training, lived experience, or understanding of disability. They are not capable as is - see the many losses at tribunal - and this will put excessive and punitive powers in their hands. Disabled people will be harmed and are not the primary cause for the lack of sustainability in the scheme.

Submission 1566

• The Minister being able to decide to provide less funding than needed to support someone, in blocks, will leave those few left in the scheme vulnerable and struggling.
• The powers granted in this Bill to the Minister to make changes without going through Parliament are dangerous.
• This Bill seems ill-advised, created by and for people without any understanding or lived experience of disability.
• The Bill itself is inaccessible, as was this inquiry/submission timeline.

My key concerns

Access and eligibility

• Changes to access requirements generally will make an already hard process filled with hoops to jump even harder. Anyone with multiple or complex disabilities already finds it difficult to get the ever-growing amount of evidence required to access the scheme. The goal posts keep moving and this seems intentional to deter people who need support from even trying.
• Many treatments for complex conditions are not covered by medicare. There is a huge gap that disabled people, who are already marginalised, often cannot afford. These treatments may also be inaccessible because of the person’s remote location, or because their conditions are rare. Requiring all treatment be accessed and proof of this as eligibility criteria will mean people will be delayed in getting support and massive inequality will be created in who gets to access the scheme. Only those who can afford and are already well-supported will be able to provide enough evidence. In the meantime those unlucky people without the privilege or wealth or easy-to-understand conditions will deteriorate and end up costing more to help, or die. Leaving disabled people in poverty to die is eugenics.
• Removing people’s access with the assumption that they will then be supported by other state-based initiatives, when those initiatives don’t yet exist or are barely adequate, will cause real, extreme harm. The need doesn’t magically disappear when you take the funding away.
• Changing the definition of functional capacity to exclude a person’s environmental or personal circumstances removes an important individual component. Their personal circumstances do vastly impact functional capacity, and part of providing support needs to be addressing their environment, e.g., assistive technology and home modifications. This will create a gap that many people who need help will fall through.

Submission 1566

Planning

• Plans should be individualised. No person with disability is the same, even if they are diagnosed with the same condition and treatment must be tailored to the individual. This has been true for my entire medical journey, speaking with every specialist, so why is it different for the NDIS?
• Limitations on when changes can be made and reduced flexibility around changing circumstances will prevent participants from accessing timely intervention and support. Disabilities can be dynamic and unpredictable. Personally, I can experience a dramatic reduction in my functioning seemingly out of the blue. I have had sudden onset of symptoms that have needed to be managed by seeing several different specialists and allied health. These things do not work on a neat schedule and confining changes to such will mean people’s conditions worsen while they wait, which may mean more expenses for the scheme in the long-term rather than making it more sustainable.

Contacting participants & punitive powers

• Punitive measures for a participant being uncontactable will cause harm. Stopping, pausing, or reassessing plans if someone does not respond within a “required” timeframe ignores the reality of how the NDIA currently contacts participants and will punish disabled people unnecessarily. There are many reasons a participant may not be able to respond within a certain timeframe, from hospitalisations, family emergencies, housing instability, and the obvious disability-related communication issues. I have times when I am non-verbal and have had repeated calls from someone at the NDIA that ignore my email-communication preference on my file.
• Will the timeframes be specific to certain disabilities? Will there be allowances for altered communication? Will there be provisions for extenuating personal circumstances? What will the appeal process, if any, be if a support is cut or stopped because of a lack of communication?
• What kind of training will NDIA staff have to support them searching homes or issuing fines? This is extremely dangerous and overly punitive.
• Again, the assumption is participants are rorting the system and must be punished, despite a lack of evidence that this issue is the main culprit for the lack of sustainability for the NDIS.

Submission 1566

Loss of choice and control

• Large-scale registered providers are some of the worst offenders for providing inadequate or dangerous care. Limiting a participant’s choice and control over who supports them goes against the principles the scheme was originally set up under and takes us back several steps in terms of disability care. Being able to directly employ, vet, and/or let go of workers like independent support workers empowers disabled people to determine what supports their needs best.

• Being able to choose the right plan manager or support coordinator means they are working in the participant’s best interest. Different people need different things from these workers and there are many reasons why someone picks one worker over another. Non-disabled people get to pick their accountants, tradies, based on whatever reason they want. We all get to choose our GP’s and systems that limit that choice create inequality. Disabled people should get to choose who works for them.

Lack of oversight and decision making powers for the Minister

• The Minister should not be able to cap or set prices, nor making sweeping changes without parliamentary oversight. The Minister is not a dictator of the scheme and should be working for disabled people, rather than Governmental self-interest.

• Lack of parliamentary oversight and processes will give a huge amount of power over to one person and party. This is extremely dangerous.

• No one person should be able to make changes like that to legislation.

• What will inform their decision making process? Do they have any lived disability experience?

• As seen in this Bill there’s a clear deficit of disability understanding and the workings of the NDIS and NDIA themselves. The mental health impact these proposed changes alone have had are tremendous on me and my community. I cannot fathom the impact of more changes unchecked, except that it will be devastating.

• I feel deeply unsafe and unfairly targeted as part of a vulnerable population and these powers seem to suggest that will get worse.

The NDIA and administration of the NDIS

• My personal experience with the NDIA staff and those affiliated like the Local Area Coordinators has been extremely eye opening. Many of the people you interact with do not have adequate disability knowledge. The vast number of

Submission 1566

administrative errors and incompetence is high and can be seen by the number of cases taken to (and lost) at the tribunal. Several in my community have had to endure endless fights with staff who do not or will not understand their needs orn disabilities and are working on dangerous, outdated stereotypes instead. My personal experience had my LAC submit an old, incorrect document in my application which meant one of my disabilities was not correctly reviewed or added to my access application, which has led to money and time wasted chasing up new evidence.

• The proposed algorithm/computer program based decision making process will not adequately be able to manage complex or multiple disabilities. Every person with a diagnosis is different and they cannot be lumped into a single category and expected to all fare the same.
• Human biases are baked into these programs because they are designed by humans or built on human input. These will be the same.
• The existing process to determine adequate support to need is barely functioning. as explained before bias is rife within the system and will continue to show up even if the human component is taken out.
• There needs to be more lived-experience oversight in the functioning of the NDIA and administration of the scheme, not less.

My lived experience

I recently gained access to the NDIS as a participant (end of 2025). The access process involved overcoming huge administrative hurdles and at great personal financial cost over several years - from getting my diagnoses, something already extremely difficult to do as a queer, non-white, woman navigating the medical system. Before my condition deteriorated, I was working in a Community Information & Services organisation and had a stable and fulfilling career. I was helping very vulnerable people who often fell through the cracks of support available. I had to leave my job due to my health and just trying to figure out what was wrong and get any kind of help became more than a full-time job.

Despite the many private specialists I saw and the letters I provided, when I gained access to the NDIS, I received a limited plan that rejected most of my specialist recommendations due to a “lack of evidence”. This is a very common experience with the scheme and I was lucky (due to my education, financial position, and work experience) to have been able to put together an application and gain access at all. The bulk of my funding is in capacity building therapies, specifically with the intention to get a Functional

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Capacity Assessment at the request of my planner. Essentially - despite already being granted access - I am still spending the majority of my limited time, energy, and funding pursuing a report to further prove my funding needs. It feels highly cyclical and is a good example of where the Agency itself is causing some of the overspending issues; the team that reviewed my access application had to be paid, the planner had to be paid, the scheme is paying for these same people to then re-review and so on.

Despite this, the miniscule amount of core funding I received has already been life-changing and I hope eventually so will the capacity building.

I know what it is like to live without support. I spent years deteriorating and being a burden for my partner, despite my best efforts. My disabilities are complex and dynamic - no day looks the same and that can make my functional capacity very hard to assess (particularly in the way of the proposed changes!). Without any support I was extremely isolated, primarily home-bound, and entirely reliant on my partner. This not only put strain on our relationship, but put him at risk of burnout as well. I was living without the dignity or freedom of my non-disabled peers, purely because I lost the genetic lottery.

Without the capacity building support that I have now, I couldn’t afford to access any kind of therapy regularly which led to a significant decline in both my physical and mental health, worsening my condition and functional capacity overall. One of my main goals has been to return to stable work, something I will have to give up pursuing entirely without access to the NDIS. There are no other supports available to me. Due to my partner’s current income being just above the threshold, and the fact that the partner income tests exist, I am not eligible for any centrelink support (including but not limited to the DSP, JobSeeker, Healthcare card etc.) I have aged out of any state or council based youth support. I am not even near old enough to access the older age bracket. I often feel I have fallen through the cracks myself, as I have no financial freedom and am entirely dependent on my partner and his good-will. I have delayed, canceled, and been forced to forgone many medical related treatments due to a lack of funds in the past and ongoing. NDIS access has been a lifeline for me for the first time in years. It feels cruel and hurts to know that I may lose it so quickly after receiving it, and that others will be in the same position. Who gets to decide the line where the cuts end?

Without community access support I can’t easily get to my medical appointments, let alone have a social life beyond my partner. People hear ‘community access’ and think of luxuries but the reality is this funding means getting the therapies I need to get better, and improving my mental health and communication skills to a point where I am no longer isolated. There’s even smaller things like help with household tasks that mean reducing

Submission 1566

the burden on my informal supports and lessening their risk of burnout. Before I became everything fell to my partner and housemate and I was simply lucky enough to have those people in my life to begin with. I know many who do not even have that. If I had my funding reduced or removed, this would directly impact not only my well-being but also the well-being of my immediate community.

I am terrified of returning to that same point again, I truly fear whether I will survive, and I know many disabled people in my community feel the same.

What I want the committee to understand is: The is little to nothing in this Bill that supports disabled people. There will be very real, very negative consequences to the community - from people who will now never get the support they need, to those who lose or have their support lessened or capped. Disability is as varied as the people who have them. Nothing for us without us isn’t just a saying, it is obvious this Bill was written without lived disability experience.

This Bill is primarily a cost-saving measure that has been created with the impression that the disabled community are easy targets. Social services like the NDIS should never have been a for-profit scheme, and the corporations and service providers are primarily the ones that have been rorting and raking in huge profits. This Bill will only make that issue worse while punishing the very people the scheme was meant to protect in the first place. This is one (more) step towards a eugenics play-book.

Final statement I have done my best (with no support and limited energy) to make my submission clear and comprehensive within the very short time-frame given. I will experience negative and harmful consequences from writing this with such short notice. I consider myself privileged to have the education and research background to have been able to access this Bill and make my submission at all. Many of my close friends and peers found this process to be entirely inaccessible.

Please consider my lived experience when reviewing this Bill and understand the very real harm that will be caused by it. The Bill in its current form should not be passed by Parliament.