Submission 2096

To Senate Standing Committee on Community Affairs:

Submission to the Inquiry into National Disability Insurance Scheme Amendment (Securing the NDIS for future Generations Bill)

Summary:

Despite widespread disinformation that Covid is “mild” or “over”, the Covid 19 virus continues to disable people in large numbers. Long Covid is an escalating public health crisis which continues to generate ongoing consequences across society. Due to the impacts that this Bill is likely to have in the current context, I reject this bill in its entirety. Now is not the time to restrict or cut the NDIS. If anything, now is the time to expand the scheme to accommodate all of the people who have already been disabled by Covid, and all of the people who will be disabled in the near future.

As someone with lived experience of Long Covid, I can see that there is much in this bill that will impact people with Long Covid if it is passed. In fact there is much more in this bill that will impact us than I can cover in this submission.

I choose to focus on the following aspects of the Bill that I see as among the most detrimental:

• The requirement under Part 8 to exhaust all appropriate treatments as a precondition to access the NDIS.

• The change in wording from support needs “arising from” impairments to support needs “arising directly from” impairments.

• Part 9 of the Bill, which blocks people from accessing the NDIS if their condition can be covered by workers compensation.

About Me:

I am a Long Covid sufferer. I have been disabled since November 2022, when I was infected with Covid on placement in a school as part of my teaching degree. Due to debilitating pain, fatigue and Post Exertional Malaise (a worsening of symptoms after exertion), common Long Covid symptoms, I am currently housebound. I cannot walk for longer than two minutes, cannot easily do basic household tasks like cooking or

Submission 2096

cleaning, cannot go to medical appointments without assistance, cannot do my own shopping, and probably cannot complete my teaching degree or enter the workforce without support any time soon. Yet I have not bothered trying to access the NDS because I know that my chances are extremely slim. The only disability support I have is from friends and family, and it isn’t enough.

My situation is grim but I am lucky in one way. Unlike most people who struggle with Long Covid, I do not have any noticeable cognitive impairments. It is for this reason that I feel a responsibility to write a quality submission about Long Coid, because most people with Long Coid cannot do this in the very restricted time frame for this inquiry.

I am an active participant in the Long Coid community and I have a PhD in anthropology. I approach the Long Coid community from an anthropology background. This means I am not just concerned for myself. I take an interest in what other people with Long Coid are going through and the socio-political dynamics that make things difficult for all of us. While I am not in a position to speak on behalf of the Long Coid community, I am deeply concerned for us as a collective.

My Concerns About the Bill:

Introduction

Ideally, it would be preferable to write a comprehensive submission covering every aspect of how the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill is likely to impact people with Long Coid. It would be preferable to have written something similar to the Australia Long Coid Community Facebook Group’s submission to the 2022-2023 inquiry, “Sick and Tired: Casting a Long Shadow: Inquiry Into Long Coid and Repeated Covid Infections”. Unfortunately the Long Coid Community is not in a position to write such a thorough document in the very short two week time frame allocated to us. As people who struggle with both debilitating fatigue as well as cognitive impairments, it is difficult for us to write submissions to inquiries. Indeed, if more people with Long Coid were able to access the NDS, we would be able to write a better submission. The two week time frame makes this inquiry inaccessible for most of us. In future, inquiries around disability should be made more accessible to the people who the legislation is likely to impact.

Fortunately it is possible to draw from the Australia Long Coid Community’s previous submission to the “Sick and Tired” inquiry. The authors of this document surveyed our community of thousands about, among other things, our support needs. The survey

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revealed that the vast majority of respondents need the kind of support that the NDIS provides. According to the submission:

Debilitating impacts of Long COVID across all aspects of life were reported. Most people (96%) reported difficulty with basic housework, along with cooking and caring for others (90%). Many experienced a daily reduction in their capacity to shop (50%) or socialise (61%) and more than 60% reported feeling unsupported. (Austin et al., 2025 p.211).

Based on the survey evidence, the authors formulated recommendations. Two of the recommendations of the Australia Long Covid Community submission were:

• Support us: People with Long Covid need intensive support including employment support, income support, support for equipment and medications, and support to have suitable workplace adjustments. We also need work environments that are supportive to avoid getting re-infected and to design jobs that accommodate our needs. We have lots to offer and we cut across every section and occupation and industry. There needs to be a nationwide systemic approach.

And:

• Partner with us: Work with us to design policy and research. Acknowledge our lived experience. We can be your research and policy partners. Don’t make decisions without us.

Further, while preparing for International Long Covid Awareness Day in 2024, our community formulated a list of measures that we call on our government to implement in order to address the Long Covid public health crisis. We went through a comprehensive democratic process, in which we voted on a list of five points. The third point reads:

“Review Medicare Benefit Scheme (MBS), Pharmaceutical Benefit Scheme (PBS), National Disability Insurance Scheme (NDIS) and Disability Support Pension guidelines to increase accessibility for patients with Long COVID and associated illnesses such as autonomic dysfunction and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).”

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Our community has collectively decided on what we need, by survey and by vote. Both the 2022 survey and the 2024 vote call on our government to provide more support. Point 3 of what we voted on in 2024 specifically calls for increased access to the NDIS. We also called for co-design, which is markedly absent from the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill.

The reason why the call for greater access to the NDIS is so widely supported in the Long Covid and ME/CFS communities is due to the fact that most of us cannot access the scheme, despite the severity of our conditions, even when our doctors consider that our impairments are likely permanent. The consequences of not being able to access the NDIS are often serious for us. For many of us, due to disabling fatigue, widespread pain, cognitive impairments, inability to tolerate being upright, and our many other symptoms, if we can’t access the NDIS it means we cannot leave our houses, clean our bedsheets, cook proper meals, work, go to medical appointments, or even eat.

I will outline some of the ways in which the existing NDIS fails us, and how these existing barriers are likely to become even more insurmountable for us if the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill is passed.

Barriers to Accessing the NDIS

Due to the limited time frame of the inquiry, this is only a partial explanation about how the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill is likely to prevent people with Long Covid from accessing the NDIS. I will outline some of the problematic aspects of the bill:

• The requirement under Part 8 to exhaust all appropriate treatments as a precondition to access the NDIS.

a. Most people with Long Covid cannot access the NDIS in its current form. One of the main reasons why this is the case is because we are often told we have to undertake damaging or ineffective treatments such as Graded Exercise Therapy (GET) or Cognitive Behavioural Therapy (CBT). Even though Graded Exercise Therapy is scientifically discredited (Vink & Vink and Niese, 2025), I have heard many anecdotes from other people with Long Covid of doctors prescribing these treatments, and it is something I have also experienced myself. If the Bill becomes law, this barrier will become further entrenched.

Submission 2096

While some people with ME/CFS or Long Covid have been able to access the NDIS after their doctor outlined why these treatments are inappropriate for them, for many people with Long Covid this pathway is either difficult or impossible.

The current Clinical Practice Guidelines for treatment of ME/CFS still recommend GET and CBT. These guidelines are under review and many of us hope that these recommendations will be removed when the new guidelines are released, but in the meantime many doctors continue to prescribe these inappropriate treatments. As an example, the first time I sought health care for my Long Covid situation in 2023, I was told by my GP to “lift 5kg weights”. Had I followed his advice I probably would have ended up bedbound.

It is unlikely, then, that many people will be able to access the NDS after getting a letter from a doctor outlining why GET and CBT are inappropriate treatments. Acquiring such a letter often involves a long process of “doctor shopping” that many of us simply do not have the energy, cognitive capacity or money to carry out. Part 8 of the bill which requires us to exhaust “all appropriate treatments” is therefore inappropriate.

b. Due to a lack of government willpower and funding, there are many reasons why it is hard for people with Long Covid to access treatments. Many of us cannot access treatments for financial reasons. Many of us have very little money because Long Covid prevents us from working.

Because they are not covered under the public system, some Long Covid treatments are very expensive, such as a Stellate Ganglion Block. This procedure can cost about $800 and may need to be repeated many times to achieve a lasting improvement. Many medications for Long Covid are not covered on the PBS, including Low Dose Naltrexone, one of the most commonly prescribed, which can cost over $100 per prescription. Even seeking health care is expensive. Medical professionals in the public health system are not properly trained to treat our condition, so many of us have to pay large sums of money to see specialists through the private system.

Another barrier to accessing treatments is physically getting to the doctor or treatment site. Many in our community are housebound or bedbound. Leaving the house to attend in-person medical appointments can lead to weeks of exacerbated symptoms and decreased function, if not a permanent decline in functional capacity. This is even more significant for those in rural and remote areas who have further to travel to access treatments, and for those who lack informal supports to assist with travel. There are many of us who, medically, may benefit from a particular treatment, but this is outweighed by the cost of physically going to the appointment so doctors advise against it.

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Explicitly ignoring a person’s financial and geographic circumstances would be extremely unfair and would exclude those with greatest need from accessing the NDIS. The requirement to exhaust treatments that are financially and geographically inaccessible will increase the inequity of access to the scheme and leave the most vulnerable Australians without support.

c. Long Covid is a new disability which only began seven years ago. The science around Long Covid is still evolving, and there is not enough research funding to generate answers for us. In this situation it can be difficult to determine what the appropriate treatments for us actually are.

2. The change in wording under paragraph 34(1)(aa), subsection 17(B), and subsection 32L(2) from support needs “arising from” impairments to support needs “arising directly from” impairments.

a. In the case of Long Covid, it can be difficult to determine which support needs arise directly from which impairments. Long Covid is a complex condition that commonly involves multiple, overlapping impairments. The Covid virus, and the body’s response to it, can attack any and every system in the body. Due to this widespread damage, Long Covid often triggers multiple overlapping conditions including Postural Orthostatic Tachycardia Syndrome (POTS), Mast Cell Activation Syndrome (MCAS), Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS), gastroparesis, brain injury and many more.

In addition, there are other conditions that are known to place people at elevated risk of Long Covid, such as Ehlers Danlos Syndrome (EDS), autism, ADHD, PTSD and endometriosis. When people who already have these conditions experience a worsening of symptoms that continues months after Covid infection, it can be difficult to tell whether disability arises “directly from” the prior condition or Long Covid, or a combination of both.

Given the complexity of Long Covid and its many overlapping impairments, the proposed change in wording is deeply concerning. A person could have Ehlers Danlos Syndrome, autism, POTS, MCAS and ME/CFS as well as Long Covid. Indeed, this kind of circumstance is common in the Long Covid community. How will such a person access NDIS support under the proposed new legislation? Which support need arises “directly from” which impairment? How will the NDIA determine this if doctors cannot figure it out?

Submission 2096

b. Another concern with the change in wording is that it likely means people will only be able to access support due to what arises “directly from” one condition but not another. Such artificial compartmentalisation is not consistent with the nature of Long Covid, which commonly involves interconnected impairments.

While it is next to impossible to access the NDIS with Long Covid, some people have nevertheless been able to access NDIS support via other disabilities that commonly overlap with Long Covid such as autism. If support is only granted to what arises directly from an impairment, it is likely that people will lose NIDS support in cases where Long Covid has exacerbated a pre-existing condition for which they have access to the scheme. The bill’s greatly reduced flexibility will exclude people with complex disabilities.

3. Part 9 of the Bill, which blocks people from accessing the NDIS if their condition can be covered by workers compensation. a. Many people with Long Covid contracted Covid at work, and by rights should be entitled to Workers Compensation. However the experience in practice of many people with Long Covid is that it is extremely difficult to get Workers Compensation for our condition. If the Bill is passed, on paper it will look like people with Long Covid can get support via Workers Compensation. In practice it will only further entrench the current reality; that the vast majority of people with Long Covid cannot access either Workers Compensation OR the NDIS. If someone has applied for Workers Compensation and been told they are ineligible, it wouldn’t be fair for the NDIA to determine that that person was injured at work and is therefore ineligible for NDIS. While I am making a case that Parliament should reject this bill in its entirety, if it is passed the wording should at least provide some clarity around people’s rights around actually receiving Workers Compensation, rather than whether they might be able to access it.

Recommendations:

• I recommend that Parliament does not pass the bill.
• I urge the government to restart the reform process after consulting properly with disabled people and carers. As casualties of a growing and important public health crisis, people with Long Covid and ME/CFS need to be included in this process. The process needs to be accessible for us, allowing us proper time to collectively formulate our views.

Submission 2096

• The government needs to co-design the NDIS with people with disabilities, including people with Long Covid and ME/CFS. We need a co-design process that will result in greater access to the NDIS for people with our conditions, not less.

• In future, when drawing up legislation or guidelines about NDIS access for people with Long Covid and ME/CFS, our government should not seek advice from proponents of Graded Exercise Therapy or Cognitive Behavioural Therapy.

References

Austin, R., Yeates, K., Kyaw-Myint, S. M., Newport, R., & Yeoman, P. (2025). We Will Not Be Silent: The Australia Long COVID Community Speak Out About the Role of Epistemic Injustice in Erasing Evidence of Long COVID in Australia. In D. Lupton (Ed.), Long COVID and Society: International Perspectives (pp. 205–225). https://doi.org/10.1007/978-981- 96-9168-5_9

Vink, M. and Vink-Niese, A. (2025). CBT and Graded Exercise Therapy Studies have Proven that ME/CFS and Long Covid are Physical Diseases, Yet No one is Aware of that. Frontiers in Human Neuroscience 19: 1495050 https://doi.org/10.3389/fnhum.2025.1495050