Submission to the Senate Community Affairs Legislation Committee
Inquiry into the National Disability Insurance Scheme Amendment
(Securing the NDIS for Future Generations) Bill 2026
01/06/2026
Executive Summary
This submission is made from the perspective of a neurodivergent Australian living with fibromyalgia and suspected Ehlers-Danlos syndrome, and as the partner of a disabled NDIS participant.
My experiences highlight three significant concerns relevant to the proposed National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.
First, disability is not always visible. Throughout my life, academic achievement and outward appearance often led others to assume that I did not require support. In reality, I experienced significant challenges that were overlooked because I appeared capable. I am concerned that disability policy continues to underestimate the support needs of people with invisible disabilities, chronic illness, and neurodivergence.
Second, the current evidentiary requirements for disability support can create substantial barriers for people on low incomes. Despite living with significant functional impairment, chronic pain, fatigue, a diagnosed condition, and symptoms consistent with Ehlers-Danlos syndrome, I have been unable to obtain the specialist assessments and documentation required to access many forms of support. Since being forced to leave employment in 2023, I have found myself trapped in a cycle where disability limits my ability to earn an income, while limited income prevents me from obtaining the evidence and healthcare needed to improve my circumstances. My experience demonstrates that financial barriers can prevent disabled people from accessing support altogether, regardless of need.
Third, through supporting my fiancé, I have witnessed the emotional, administrative, and practical burden that disability support systems place on disabled people and their families. The requirement to repeatedly prove disability, uncertainty regarding essential supports, and fears about future funding have significant impacts on mental health, wellbeing, and quality of life. These impacts extend beyond participants and affect partners, families, carers, and broader support networks.
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The NDIS is more than a funding system. For many disabled Australians it provides stability, independence, dignity, and the opportunity to participate in education, employment, relationships, and community life.
I urge the Committee to ensure that any reforms to the NDIS preserve these outcomes and do not create additional barriers for people with disability. In particular, I encourage the Committee to consider the experiences of people with invisible disabilities, people who cannot afford costly diagnostic pathways, and those who may never apply for support because the evidentiary burden is beyond their financial means.
Early and accessible support prevents crisis, promotes participation, and reduces long-term social and economic costs. Disabled Australians deserve a system that recognises their needs, values their contributions, and provides genuine opportunities to live with dignity and independence.
Personal Statement
I am writing this submission as a neurodivergent person, as someone living with fibromyalgia and suspected Ehlers-Danlos syndrome, and as the fiancé of a disabled NDIS participant.
I am deeply concerned about the proposed changes to the NDIS and the impact they may have on disabled Australians, their families, and their support networks.
My perspective is shaped by both my own experiences with disability and my experiences supporting the person I love as he navigates the disability support system.
Growing Up Neurodivergent Without Support
I am neurodivergent, but I grew up at a time when support was often only offered to people whose disabilities were highly visible or who were considered unable to succeed academically.
Because I achieved good grades at school, many people assumed I was coping.
Teachers saw academic achievement. Family members saw report cards. What they did not see was the constant effort required to function in a world that was not designed for me.
I struggled with social interactions, sensory overload, anxiety, changes to routine, and the enormous mental effort involved in trying to fit in with my peers.
I learned to mask my difficulties because it was often easier than asking for help.
Like many neurodivergent people, I became skilled at appearing capable while struggling privately.
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By the time I returned home from school each day, I was often exhausted. I spent significant amounts of energy monitoring my behaviour, trying not to stand out, and forcing myself to meet expectations that did not account for my disability.
Because I was considered intelligent and academically successful, my difficulties were frequently dismissed or minimised.
The assumption seemed to be that if I could get good grades, I must not need support.
That assumption was wrong.
Good grades did not make me any less neurodivergent. They did not remove my struggles. They simply made those struggles easier for others to ignore.
As a result, I grew up without many of the supports that could have reduced stress, prevented burnout, and improved my quality of life.
I worry that current discussions around disability funding continue to reflect the same misunderstanding.
Support needs do not disappear simply because someone appears successful.
Many neurodivergent people who seem to be coping are carrying enormous invisible burdens. When support is denied because someone appears capable, the result is often burnout, declining mental health, social isolation, unemployment, and crisis later in life.
Disability support should prevent crisis, not wait until people reach breaking point.
The Barrier of Proving Disability
I also live with symptoms consistent with Ehlers-Danlos syndrome, a hereditary connective tissue disorder that affects many aspects of daily functioning.
I experience chronic pain, persistent fatigue, joint instability, and physical limitations that affect my everyday life.
However, obtaining a formal diagnosis has proven extremely difficult.
The specialist assessments, genetic investigations, and diagnostic processes required to confirm Ehlers-Danlos syndrome can be prohibitively expensive. Like many disabled Australians, I simply do not have the financial resources necessary to pursue every assessment required to satisfy disability support systems.
My own experience reflects this reality.
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Although I had experienced symptoms consistent with both autism and ADHD for many years, I was only able to pursue an ADHD assessment after receiving government COVID support payments. Prior to that, the cost of assessment was simply beyond my financial reach.
This experience highlighted a broader problem within disability and healthcare systems. Access to diagnosis is often determined not by need, but by financial capacity. Many people spend years living with significant impairments without formal recognition because they cannot afford the assessments required to obtain it.
In addition to autism and suspected Ehlers-Danlos syndrome, I have also been diagnosed with fibromyalgia. Chronic pain, fatigue, and fluctuating symptoms affect my ability to function consistently and place significant limitations on my daily life.
Since my disabilities forced me to leave employment in 2023, I have spent years attempting to gather the evidence needed to better understand my conditions and access appropriate support.
Like many disabled Australians on low incomes, I have explored every affordable option available to me. As a lower-cost alternative to Australian genetic testing, I arranged a full genome sequencing test through an overseas provider at a fraction of the cost charged by Australian laboratories. This was all I could realistically afford.
The results identified genetic markers consistent with my family history and symptoms. However, because the testing was conducted overseas, it was not accepted as sufficient evidence for diagnostic purposes within the Australian system.
As a result, despite significant symptoms and a strong family history, I have been unable to obtain a formal diagnosis of Ehlers-Danlos syndrome.
The cost of obtaining the specialist assessments and genetic testing required to satisfy Australian evidentiary standards remains far beyond my financial means. As someone living on JobSeeker, a genetic assessment costing several thousand dollars is simply not realistic. There are times when even routine medical expenses are difficult to manage.
This creates a situation that many disabled people will recognise. I need evidence in order to access support, but I need support in order to obtain the evidence.
Since leaving employment in 2023, I have been unable to return to work. Not because I lack the desire to work, but because I cannot afford the healthcare, assessments, therapies, and supports that could help me improve my functional capacity.
I am effectively trapped in a cycle where disability limits my ability to earn an income, while limited income prevents me from accessing the care and evidence required to address that disability.
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These same evidentiary barriers also prevent me from applying for other forms of support. At present, I do not believe I could successfully apply for the Disability Support Pension for many of the same reasons I have never attempted to apply to the NDIS.
I have also explored lower-cost options for obtaining allied health assessments and reports. As recently as 2025, I investigated a range of possibilities but was unable to identify any affordable pathway that would provide the level of evidence required by government support systems.
My experience demonstrates that financial barriers do not merely delay diagnosis. They can prevent people from accessing support entirely, even when their disabilities have already had a profound impact on their health, employment, and daily functioning.
My fiancé and I both live on Centrelink payments. I currently receive the JobSeeker Payment while studying for a Bachelor’s degree in Information Technology.
I am pursuing higher education because I want to contribute to society, develop skills, and improve my long-term employment opportunities.
However, studying while managing autism, fibromyalgia, chronic pain, and persistent fatigue is often extremely challenging.
The reality of studying with these conditions is very different from what many people imagine.
There are days when pain makes it difficult to concentrate on coursework. There are days when fatigue is so overwhelming that simply attending classes, completing assignments, or managing basic household responsibilities requires significant effort.
Like many disabled students, I often have to make choices about where my limited energy will go. Sometimes that means prioritising study at the expense of household tasks, social activities, recreation, or recovery. Sometimes it means needing days to recover after periods of intensive academic work.
From the outside, people may see a university student progressing through a degree. What they do not see are the physical and mental costs required to maintain that progress.
Success is often interpreted as evidence that support is unnecessary. In reality, many disabled people achieve success despite substantial barriers, not because those barriers do not exist.
I am studying for a Bachelor’s degree in Information Technology not because I am unaffected by disability, but because I am trying to build a future despite it.
There is often an expectation that partners and family members will step into caring roles when formal supports are unavailable or inaccessible. As the partner of an NDIS participant, I am frequently expected to provide support despite managing my own disabilities and health conditions.
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This creates a difficult situation where disabled people are often expected to care for other disabled people because adequate supports are not available.
I was previously able to participate in paid employment. However, the cumulative impact of my disabilities, combined with the lack of access to appropriate supports, has significantly affected my capacity to work.
The loss of employment has financial consequences, but it also affects independence, social participation, and long-term career opportunities.
I have never applied to the NDIS for support relating to my Ehlers-Danlos syndrome symptoms.
Not because I do not need support.
Not because my symptoms do not affect my daily functioning.
But because I have little confidence that I would be able to meet the evidentiary requirements needed for approval.
I know that many other Australians face similar barriers.
The system often assumes that if a person cannot produce specialist reports, diagnoses, and extensive documentation, their disability-related needs do not exist.
In reality, many people are trapped in a cycle where they need support to access diagnosis, but require diagnosis before they can access support.
Disability does not become less real because a person cannot afford the specialists required to prove it.
I suspect there are many disabled Australians who never even begin the application process because they know they cannot satisfy the evidentiary burden required to access support.
This is why early intervention and accessible supports matter. When people cannot access support, their health often deteriorates, their participation decreases, and they may ultimately require more intensive assistance in the future.
Providing support early is not only beneficial for disabled people; it is also a more effective use of public resources in the long term.
Watching the Person I Love Navigate Disability
Over the years, I have witnessed firsthand the realities of disability through my fiancé.
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I have accompanied him through medical appointments, disability assessments, NDIS reviews, funding discussions, advocacy work, Senate submissions, and the countless administrative processes required to access and maintain support.
One of the things that has affected me most is how often disabled people are required to prove and re-prove that they are disabled.
I have watched him spend countless hours gathering evidence, attending appointments, writing submissions, communicating with providers, and advocating not only for himself but for many other disabled Australians.
The amount of work involved is difficult for many people to understand unless they have lived it themselves.
This effort comes at a significant personal cost.
Time and energy that could be spent on health, relationships, study, work, or community participation is instead spent navigating systems that often seem to begin from a position of scepticism.
I have also seen firsthand how inadequate support affects other disabled people in our lives.
I have watched friends struggle to obtain the support they require to remain safe and independent. I have listened to conversations about support worker shortages, funding limitations, inaccessible housing, equipment failures, and fears about what will happen if supports are reduced.
Policy discussions may appear abstract to those making decisions, but for disabled people and their families these discussions are deeply personal.
Questions about funding are questions about whether someone can remain independent.
Questions about support workers are questions about safety.
Questions about equipment are questions about mobility, dignity, and participation in everyday life.
These are not theoretical concerns.
They are realities that affect people every day.
The Psychological Impact of Funding Uncertainty
One of the hardest parts of this experience has been watching someone I love carry the constant fear of losing essential supports.
I have seen the stress that funding uncertainty creates.
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I have listened to conversations about what would happen if supports were reduced, if equipment could not be replaced, or if care needs could no longer be met.
I have watched the emotional toll that these possibilities take.
The fear is not simply about losing services. It is about losing independence, safety, health, and quality of life.
As a neurodivergent person, uncertainty itself can be extremely distressing. Living with ongoing uncertainty about something as fundamental as disability support creates a level of anxiety that is difficult to describe.
The possibility that supports could disappear or become harder to access creates a constant background worry that affects mental health, relationships, and future planning.
No one should have to live with the fear that the supports keeping them safe and independent may be taken away.
What the NDIS Represents
The NDIS is often discussed in terms of budgets, spending, and administrative systems.
For disabled Australians and their families, it is much more than that.
It represents stability.
It represents independence.
It represents the ability to participate in education, employment, relationships, and community life.
It represents the opportunity to live with dignity.
I often think about how different my own life may have been if my support needs had been recognised earlier, and how much easier it might be to manage my current health conditions if access to diagnosis, treatment, and support were not limited by financial barriers.
The NDIS should not only support people who have already reached crisis point. It should help prevent people from reaching that point in the first place.
When support is delayed, denied, or made inaccessible, the costs do not disappear. They are simply transferred onto disabled people, families, carers, health systems, and income support systems.
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Early and appropriate support is not only compassionate; it is a practical investment in people’s long-term wellbeing, independence, and participation in society.
My own experiences growing up without adequate support taught me the consequences of unmet disability needs.
My experiences living with chronic pain and fatigue have taught me how difficult it can be to obtain recognition and support for conditions that are not easily understood.
My experiences as the partner of a disabled person have shown me how transformative appropriate support can be.
The lesson from all of these experiences is the same.
Disability does not disappear because someone appears successful.
Disability does not disappear because someone is studying at university.
Disability does not disappear because someone cannot afford specialist assessments.
Support needs do not disappear because they are invisible.
My own circumstances demonstrate how barriers to diagnosis, inaccessible assessments, and inadequate supports can progressively reduce a person’s ability to study, work, care for others, and participate fully in society. The costs of unmet disability needs do not disappear. They are simply shifted onto disabled individuals, their families, carers, health systems, and income support programs. Ensuring that disabled Australians can access support before reaching crisis point benefits not only individuals but the broader community as a whole.
I urge the Committee to protect the principles that underpin the NDIS and to recognise the very real human consequences that result when disabled people are denied the support they need.
Disabled Australians deserve security, dignity, independence, and the opportunity to participate fully in their communities.
Ryan Svoboda
Neurodivergent Australian, Person Living with Fibromyalgia and Suspected
Ehlers-Danlos Syndrome, University Student, and Partner of an NDIS Participant
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