Submission 2438
National Disability Insurance Scheme
Amendment (Securing the NDIS for
Future Generations) Bill 2026
Inquiry submission
Background
About me I am a permanently and significantly disabled Australian who has been rejected from the NDIS twice, currently has no supports in place, and cannot afford to self-fund. I became disabled as a teenager due to a car accident and family violence, and my disability was later exacerbated due to denial of healthcare, repeated family violence, and harassment at work. My disability causes neurological, physical, mobility, and psychosocial impairments.
As someone who has been injured both in a car accident and at work, and who is too young for aged care supports, I have been handballed between local, state and federal systems for over 15 years. The lack of supports has caused significant deterioration in my health, to the point where I’ve been hospitalised several times, have developed conditions with high mortality rates, and can no longer take care of myself. I can also no longer work, which means that the supports I used to self-fund are now out of reach, and I am reliant on social security which barely pays my rent, and charity/crisis services. When I was still able to work, I was employed in social policy sectors. I have no informal supports following an abusive relationship that isolated me from friends and family, and interfered with disability supports (self-funded).
Overview
The NDIS was introduced to give dignity, choice, and control to disabled Australians. The scheme is fundamentally about recognising that disability is one of the few minoritised communities/identities that anyone can join, at any time, and without choice. For some disability exists from birth, and for others it develops through circumstances like injury, disease or ill health, violence, or other trauma. It is not a choice.
Prior to the NDIS being in place, many disabled people were living in poverty, without essential supports and healthcare, experiencing disturbingly high rates of neglect and abuse, living in unsafe conditions, and even dying unnecessarily. Becoming disabled was terrifying. Not because of the impairment itself but because of what it meant. The introduction of the NDIS offered hope. Disability care was, for the first time, talked about by the Government as a basic right. And disabled people as worthy of human rights.
So it has been disappointing to see the Government once again use rhetoric that positions disabled Australians as financial or care burdens, the cause of budgetary issues, as perpetrators of fraud, or our necessary disability supports as some sort of luxury that is undeserved. It has set us back decades, and I am hearing, seeing and experiencing discriminatory comments and treatment at a severity that I haven’t seen in some time. It reminds me of going through the marriage equality plebiscite, when I (a
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queer person) had to endure an unprecedented level of abuse and offensive commentary because people felt emboldened to say I did not deserve equality. Disabled communities have always been great at organising, but years of structural violence, denial or withdrawal of care, and discrimination (on top of the pain, exhaustion, and difficulty surviving caused by our actual impairments) renders this dynamic even more exploitative than the marriage equality plebiscite.
We’re tired, some of us can’t leave the house or communicate easily, and we’re already fighting so many battles at the same time, without having to fight against further NDIS cuts and access denial. For example, in the last year I have had to fight legal and regulatory battles to: access limited medical care through my state’s transport accident scheme (they ‘forgot’ to do the right paperwork 15 years ago and refused to rectify it unless I got a lawyer); try to get my workplace to acknowledge and end disability discrimination they were perpetrating; access unemployment benefits; appeal a second NDIS rejection; protect myself from disability-related family violence; protect my medical and disability information from unlawful sharing and exploitation; and get my local healthcare service to provide safe and accessible care. And then there are the smaller, everyday battles like every disability service system requiring slightly different paperwork, evidence and language, and this making it hard to access food, transport, and housing. Being forced to fight every single time I need to access care is dehumanising and exhausting. I know how Sisyphus felt. But it also means that the Government forcing me into battle at a policy level when I haven’t even been able to eat properly for two years is cruel. I don’t feel I have a choice: I have to engage as a matter of survival, because the proposed changes will prevent me from ever having access to the disability supports I need, and an Australia that thinks disabled people should once again die from depravation, avoidable deterioration, or hopelessness, is not one that I want to live in.
The proposed NDIS amendments are regressive, harmful, and don’t even address the real sources of scheme fraud. It doesn’t come from participants: it comes from providers, plan managers, price gouging, and corporate criminal networks. Disabled people are just as horrified by actual fraud. Perhaps the Government and Parliament can consider real consultation with disabled people and representative organisations to address this rather than vilifying us to save some money.
Schedule 1: Access and planning measures Part 1: Defining functional capacity
Section 9B Definition of functional capacity (1)(b) “in a context that excludes, as far as possible, the impact of the person’s environmental and personal circumstances”
(3 (a)(b)(c) “…National Disability Insurance Scheme rules made for the purposes of that subsection may prescribe: methods or criteria to be applied for the purposes of subsection (1), including classifications or thresholds relevant to an assessment of a person’s ability to undertake an activity; matters that may, must or must not be taken into account for the purposes of subsection (1); or circumstances in which a matter relevant to the application of subsection (1) is taken to exist or to not exist in relation to a person.”
The social and human rights models of disability articulate that the social and built environment that a person is in significantly impacts their disability and impairment/s, and that everyone deserves safety and respect regardless of personal characteristics or circumstances. The proposed amendment is at odds with the social and human rights models of disability, and risks changes in circumstances that reasonable affects both a person’s level of impairment and their support needs not being considered relevant, for example experiencing or leaving family violence or losing informal supports ignores the very real impact that personal circumstances and environments have on someone’s need for individually funded supports, such as living in a rural or remote location
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that does not have community-based supports or accessible environments, the impact of their housing or other social and physical environments on them, their financial means/income, the cost of individual supports in their area, or their need for safe and tailored supports due to prior experiences of abuse, trauma or neglect
It will disproportionately affect disabled people already experiencing the most disadvantage including those living in rural and remote communities, experiencing or escaping family violence, with low/no income and who need complex or tailored supports.
The prescription of an assessment tool by the NDIS and leaving complex assessment about the degree to which someone’s circumstances impact their capacity, does not recognise the enormous variability within disability: between conditions, but also between people who may have the same diagnosis but very different experiences. It suggests that bureaucratic systems – where assessors often never speak to or meet applicants - are better placed to make decisions about what someone needs that their treating team. Prescribed capacity tools very often – whether by design or application – look crudely at whether or not someone could do something in an emergency, rather than whether they can consistently do those activities everyday, without support, and without consequences. For people with pain and energy impairments in particular, there is an enormous difference between whether someone can do something once or at all, and whether they are forced into unnecessary suffering or medical complications by attempting to do them at the regularity needed.
Section 11 Applicant provision “The amendments made by this Part apply in relation to a determination or decision made by the CEO in relation to whether a person meets the early intervention requirements or disability requirements, or both, made on or after the commencement of this item, whether or not the person is a participant before the commencement of this item.”
The Government ‘grandfathers’ so many other legislative and financial changes, such as changes to negative gearing provisions. Why is it willing to spare sudden changes to Australians who can afford to invest, but it is not willing to offer the same protections to Australians who are most likely to have low/no income and very high health and disability costs?
Part 3: Strengthen link between an impairment and need for support
Section 31 Link to impairment 34(1)(aa) “Omit “arising from an impairment”, insert “arising directly from an impairment or impairments”.”
This is not a clinical distinction, and it should not be an administrative one. Many NDIS staff appear to not have a good understanding of disability or medical conditions. For example, one assessor for my claim had “never heard of” someone with my disability before – over 20,000 people with my condition are on the NDIS. They are not in any way qualified to determine whether something is linked to an impairment: that is the remit of specialists.
The idea that there are ‘direct’ and ‘indirect’ links is particularly dangerous for people with complex, degenerative and multi-system disability. For example, brain injuries have the potential to affect most systems of the body, and the way these impacts look and impact people can change over time. There’s a particularly poor understanding of how they impact women due to medical misogyny in research, education and practice. It is not uncommon for these effects to not be diagnosed for some time after the initial injury. Some conditions associated with brain injury can also have other causes, or attract diagnostic labels of their own.
I am in this position currently: I’ve had a range of ‘disorders’ since my brain injury, but because I was denied care for so long because of my age, gender and rural location, by the time they got diagnosed,
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disability schemes started saying “well there’s a possibility they were caused by something else because they are in other people so we can’t support you” (even though my treaters said “this is a known complication or impact of your disability and it’s the single most likely cause”) and “because it’s diagnosed as its own condition we won’t recognise it as a symptom of your disability” (even though diagnostic labels are required in the medical system to access treatment that disability systems demand you have before they’ll accept the condition or impacts are lifelong and ‘stable’). I’ve also had the NDIS suggest that because my impairments have become worse due to me not being able to access essential supports they “can’t tell what’s from her original disability and what’s caused by malnutrition from not being able to feed herself” and therefore they won’t provide me with supports. As if me suffering due to a lack of supports isn’t evidence that I need them. Applicants already can’t win with the ridiculous way the NDIS interprets “arising from an impairment”: adding an extra meaningless barrier will do nothing but further harm people who already desperately need support.
Part 4: Support determinations
Section 34A Determination reducing funding for groups of supports (1)(a) “For the purposes of ensuring the financial sustainability of the National Disability Insurance Scheme, the Minister may, by legislative instrument, determine: a percentage (lower than 100%) that is the percentage by which a funding component amount for a specific group of supports is reduced while the determination is in force”
The type and amount of different types (or groups) of supports that are funded should be decided by what scheme participants actually need. Making decisions that arbitrarily cut groups of supports that has no relationship to what participants needs impairs the ability of people to tailor their services to meet their individual needs, and fundamentally represents bureaucratic and Ministerial overreach. Participants not having enough of some types of support or not having well matched support does not save money or support disabled people: it does, however, stigmatise ‘types’ of support that are targeted for reduction.
This is currently happening with community supports. Disabled people deserve to access their communities, access services, and have a life with joy and social connection. The rhetoric around community access supports being a ‘rort’ has led to derision towards people using them (and who really need them) by the rest of the community. But the alternative is that disabled people are once again confined to a solitary life at home, and put at even higher risk of abuse and isolation.
Part 5: Plan renewal
Section 50A Renewal of participant’s old framework plan on end date (4)(a)(b)” To avoid doubt: the new plan does not require a new statement of participant supports to be prepared with the participant and approved by the CEO; and the making of the new plan does not involve the making of any reviewable decision.”
I have concerns that this section will be used to prevent participants from obtaining the supports they need year to year, and also prevent them from applying for appeal if they need an increase that has not been delivered. Transition arrangements in this Part do not provide participants with adequate time to adapt to new legislation. If you can indefinitely ‘grandfather’ taxation rules, you can surely grandfather NDIS rules, too.
Part 6: Reasonable and necessary supports
Section 60: Reasonable and necessary supports (3)(1)(d) ”provide NDIS supports for participants…that are reasonable and necessary, so far as is consistent with the financial sustainability of the scheme”
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Scheme sustainability should under no circumstances be an equivalent consideration to whether supports are reasonable and necessary for a person because of their impairment/s. The scheme should not have the power to essentially say “no, because if we provided support to everyone with your level of impairment the scheme would cost too much”. We don’t ration the necessity of essential healthcare against the hospital’s bottom line, nor should that occur for disability supports. If they are necessary, they are necessary. This is an abhorrent and cynical amendment.
Section 17B Principles relating to scheme sustainability (3) “Participants should be responsible for their day-to-day living costs, including day-to-day living costs incurred whether or not a person has a disability”
While this appears to be broadly reasonable, there are legitimate increases in the cost of ‘day to day supports’ for disabled people that non-disabled people do not have to pay. For example, I have impaired thermoregulation, therefore I pay more heating and cooling costs than someone without that impairment. I cannot clean my floors, therefore perhaps a robot vacuum is the cheapest way of modifying that task to make it accessible. I cannot prepare meals: food may broadly be considered a day-to-day cost, but paying for pre-prepared meals is about 4x the cost of purchasing raw ingredients. In the absence of essential home supports, I have no other choice. Given disabled people have – on average – much lower incomes than non-disabled people and much higher disability and medical costs alone, also paying more for everyday living is out of reach. It’s fair that where someone may have needed a version of something for daily living but needs a specific, more expensive version of that thing due to their impairment/s, the difference is funded by the NDIS. In the absence of that, people simple can’t afford living expenses and go without, often to significant detriment. I’ve barely eaten for the last two years because I haven’t had disability support and can’t afford those expensive pre-made meals I mentioned. That is not indefinitely sustainable. Forget scheme sustainability if supports are given, consider the sustainability of a life without the supports.
Section 68 Determination of classes of supports (2EA)(a)(b)(c)”A determination…may specify, for a support or a class of supports in relation to participants generally or a class of participants: a maximum amount of funding for the support or supports in the class of supports; or a maximum intensity for provision of the support or supports in the class of supports; or a maximum ration of worker to participant for provision of the support or supports in the class of supports.”
Disability – even the same condition or diagnosis – impacts each person very differently. Trying to make broad decisions about entire classes of people or supports or diagnoses impairs the ability of people to individualise their supports, risks the safety of people who need a higher amount of support than the ‘average’ for their condition, and leans into unhelpful stereotypes about and essentialism regarding certain diagnoses necessarily meaning certain things for everyone with that condition. Leave recommendations about the supports that people need up to their clinicians or treaters, who know them and their impairments well.
Section 70 Appropriate support systems (g) “the support is not one that would be more appropriately provided or funded by: another scheme; or one or more existing government service systems”
The NDIS may think that something would be more appropriately provided by another system, but that does not mean that system will in fact provide it. Participants – already with such significant impairment they’re applying for supports - should not be required to ‘shop around’ to every system that exists and provide proof that they won’t give the support in order to access the NDIS. The same ‘type’ of systems provide drastically different supports in different regions, leading to a likelihood that rural people will once again be disadvantaged in accessing disability support.
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As mentioned in the introduction, I have been bounced between systems for a decade and a half because each system suggests a different one is better placed to support me: the end result being that none of them do. This is one of those clauses that probably sounds reasonable to someone who has never had to exist in disability systems, but the reality is people being treated like hot potatoes. That’s not dignified and results in long-term denial of essential care and supports, and avoidable deterioration.
Section 73 Value for money considerations (1C)(a)(b) the CEO must consider whether the participant’s circumstances are likely to change in the short term in a way that would affect the participant’s need for the equipment or modifications; and if it is – the CEO must, unless satisfied by evidence to the contrary, presume that the support represents value for money only if the support is provided by leasing the equipment or modifications.”
This provision disproportionately disadvantages people who require tailored supports (such as custom mobility aids) with unpredictable or degenerative conditions, or who live in unstable circumstances for reasons outside their control (such as poverty, violence, or family matters). You often can’t rent things that are fitted well to you, or the best option for your disability. For example, lightweight wheelchairs, or electric wheelchairs with the correct foam supports.
(1E)(a)(b)(c) “…in deciding whether a support will be, or is likely to be, effective and beneficial for the participant, the CEO must, if considering 2 or more of the following matters, consider them in the following order of importance: research and evidence in relation to the support that is published, peer reviewed and generalisable; evidence as to the effectiveness of the support, having regard to the participant’s circumstances…; evidence as to outcomes for the participant, arising from their use of the support in their previous plan, in improving, maintaining, or reducing a decline in the participant’s functional capacity; other matters the CEO considers appropriate.”
The state of misogyny in research is such that there is inadequate peer-reviewed literature on conditions that disproportionately impact women, on any condition in women compared to men, and on improving women’s quality of life. Further, peer-reviewed research demonstrates significant racial and economic bias. This is absolutely true for brain injury and associated conditions. Prioritising academic research is further embedding sexism into NDIS structures. In fact, (1F) further exacerbates the risk of this clause by stating supports can be denied if there’s not enough research generally. I’m assuming someone wrote this clause thinking of gemstone healing, but you know what else doesn’t have much research yet? Literally any supports for women with brain injury, particularly when it was incurred as a child.
Listing evidence specific to the person and supports in question as third in a hierarchical list is absurd: that is the most important evidence of all. Because even our most effective supports and treatments (over a population/large cohort) are not effective for everyone. Individualised supports are the entire point of the NDIS. It is not the role of the NDIS CEO to decide that a particular support might be ‘most effective and beneficial’ for me based on something they’ve read in a journal somewhere, rather than what my own treaters have determined based on their extensive expertise and my own lived experience. I do object to (c) specifying that a support had to have been in a previous plan and not just used previously by the participant. That’s a catch-22: something can’t get funded unless it’s already been funded and shown to work.
(1G) “…the CEO must take into account the resumption that parents are responsible for providing substantial care and support for their children”
This and subsequent sections are problematic for both children and parents, particularly women. In a country where over half of children experience some form of abuse or neglect (Australian Childhood Maltreatment Study), it is a non-starter to suggest that all children can rely on their parents, or that all
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parents have the capacity to provide basic let alone disability-specific support. Children are, however, entitled to parent-like relationships with their caregivers, not clinical relationships. Expecting parents to provide specialised or clinical care (which is where this will end up) is unreasonable.
The vast majority of household responsibility – including child care – still falls on women, so these clauses are akin to the Government telling women “we expect you to undertake more unpaid work.” Believe it or not, many of these women themselves have disability, need their own supports, or are caring for several generations. These clauses make clear assumptions that all parents are safe, present, have the time and money to give significant unpaid care, are non-disabled, and have no other caring responsibilities.
It is also likely that greater expectations placed on parents will exacerbate family violence risk, which is already higher where disability is present in a family. Some of the reasons it is higher is because of the high reliance on domestic relationships, lack of external supports, financial scarcity, and stress. All of these things will be worsened through these measures.
Part 7 Plan suspension etc.
Section 79 Contactable
(1A)(a)(b) “The CEO may also revoke a person’s status as a participant if…the CEO has made reasonable attempts to contact the participant…and the participant is not contactable; or the participant’s plan has been suspended… for at least 90 days”
Who defines whether an attempt is reasonable? I have had persistent issues with the NDIS using communication methods that are not accessible to me, to communicate with me about applications. Even though I have clearly documented my communication access needs many, many times. For a disability agency, they have no idea how to work with disabled people. So will this include the NDIS calling d/Deaf participants? Emailing vision impaired or remote participants? Contacting a participant while they are in hospital or overseas? This clause will be used to unfairly remove people from the NDIS, and further marginalise people with communication access needs.
I have concerns that the NDIS can suspend plans under related sections for not being able to provide reports in the timeframe specified by the NDIS, when reports of the detail and length often required by the NDIS can take months to obtain, for reasons of provider demand, testing, and saving money to afford the reports.
Part 8 Permanence
Section 89 Permanent impairment (5)(a)(b)(c) “…an impairment or impairments are not permanent, or likely to be permanent, unless: the person has undertaken all appropriate treatment for the impairment or impairments (if any); and any other treatment is unlikely to materially improve, reverse, or alleviate the impact of, the impairment or impairments; and the impairment or impairments are likely to persist for the person’s lifetime.”
The “all appropriate treatment” part is concerning because there are plenty of examples within the NDIS and social security system in Australia of bureaucrats suggesting a person should undertake harmful, invasive or otherwise personally inappropriate treatment in order to be considered disabled. An example might be medication or ECT for someone with severe depression, despite the former causing suicidal ideation in this person and the latter risking memory loss. The phrase “alleviate the impact of” is also incredibly vague and actually represents what disability supports are supposed to achieve. It doesn’t mean it’s a “treatment”, it might just make life easier or lessen the burdens caused by the disability. This Section confuses the purpose of the scheme.
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Section 92, insertion of 25A Meaning of appropriate treatment etc. (1)(a)(b)(c) ”…appropriate treatment for a person’s impairment or impairments is treatment that is: evidence based; and can reliable be expected to materially improve, reverse, or alleviate the impact of, the impairment or impairments; and is regularly undertaken or performed in Australia.
(2) “Treatment may be appropriate treatment for a person’s impairment or impairments regardless of whether the person’s individual circumstances restrict the person from accessing the treatment. Note: A person’s individual circumstances include the person’s financial circumstances and geographical location.”
Expecting people to have accessed treatment that they can’t afford or isn’t available in their state or region is absolutely absurd. The implications of this is that someone living below the poverty line in Port Headland can’t access the NDIS unless they try a treatment that’s only available in Sydney and Melbourne. It very clearly disadvantages rural and remote people, people with low incomes, and people with conditions that are only treated in the private system and not public system. The Government cannot in good conscience require people to have tried treatments they themselves do not fund access to.
When I first acquired my disability, I was discharged back to my rural town with no plan. Not because I wouldn’t have benefited from therapies and rehabilitation, but because the hospital was sexist and dismissive, because I lived a five hour drive from my closest speciality clinic/hospital (and I couldn’t drive due to my disability, nor did I have access to public transport) all of which were private. Am I to be forever punished because rural people do not get provided with equitable healthcare? Because I was initially denied care I should have received, can I never get support for the consequentially worse disability? Because at the time I was on a below minimum wage and couldn’t afford private care, does that mean I don’t deserve disability supports? How does not having the money or access to care reasonably mean that you are less in need of care?
These provisions are further entrenching disadvantage in populations already harmed by it: rural and remote people, people denied healthcare, people experiencing poverty.
Part 9 Eligibility based on access to other services
Section 25B Alternative support requirements (2)(a)(b) “An impairment is an excluded impairment if: the impairment was caused by a motor vehicle accident; and a law of the Commonwealth, a State or Territory provides for compensation, or other benefits, for or in respect of the impairment”
(3) An impairment is an excluded impairment if: the impairment was caused by a work-related injury; and a worker’s compensation law providers for compensation, or other benefits, for or in respect of the impairment”
Wholesale exclusion of impairments caused by car accidents and workplace injury leave people with disability from these circumstances without any support for the majority of their lives. Compensation amounts are small for such impairments, and many people never obtain them because they don’t have the legal advice, capacity, or perhaps don’t want to put themselves through the trauma and privacy breaches associated with this type of legal action. Pushing often already traumatised people into legal action they probably can’t afford is cruel. Compensation also does not provide funding for disability supports. It’s intended to recognise the loss of income and personal injury the person experiences.
Further, transport and workplace accident schemes provide very limited supports for even people with severe and permanent disability. In Victoria, the TAC provides home supports for a maximum of five years post-injury (and it takes 2-3 years to get the legal process over with – or 15 in my case), and
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WorkCover only two years of support. The provision of supports is only allowed under TAC and WorkCover schemes if it helps with recovery or tangible improvements: this is the antithesis of a disability being permanent, as required under the NDIS. Neither provide support coordination or various other supports the NDIS does. The schemes are not transferable and don’t overlap in the way these clauses are suggesting. It will only create long-term disadvantage and support gaps for people with disability from road and workplace accidents.
I’ve been disabled by a road accident and workplace injury. The TAC argued with me about whether or not my brain injury was real for 15 years and refuses to fund disability supports I need, and WorkCover was so traumatising it worsened my impairments as well as being short-term. The NDIS has rejected me already, and these provisions are the final nail in the coffin of my hopes for ever getting essential disability supports in place. That’s not because I don’t need them. I can’t eat, shower, keep my house clean, get out into my community, maintain a long-term relationship, or stay in study/employment. But each of these schemes says I’m the responsibility of one of the others. Do they check to ensure I can actually get support on that scheme before making the decision? No. That’s what these clauses do. They assume there is support in place from these schemes without ensuring that’s the case. It’s like pushing someone off a cliff before checking there’s a crash mat there. And since the NDIS and My Aged Care were established, there’s been no community-based supports: if you don’t have a funding package, you have nothing.
Something that I find really devastating about this is that my disabilities were caused by other people’s negligence or behaviour. But despite that, because of the setting in which they happened, governments are telling me I don’t deserve disability care.
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