Research released by MS Australia in December 2025 revealed that there has been a significant increase in the number of people living with MS in Australia over the last three years. There were 37,756 people living with MS in Australia in 2024, an increase of 4,421 people since 2021 (from 33,335 people). Since the first MS prevalence report in 2010, the number of Australians living with MS has risen by 77.4%, while prevalence has risen 45.5%, now at 139.2 per 100,000 Australians (from 95.6 per 100,000 in 2010).
An increase in the number of Australians living with MS corresponds with an increase in the total costs for people with MS in Australia, with total costs for all people with MS in Australia increased from $2.449 billion in 2021 to $3.004 billion in 2024.
MS Australia’s 2025-26 pre-budget submission has four asks that will improve the lives of people living with MS and reduce the economic impact of MS on the Australian health, disability, social services and aged care systems:
Research to prevent people from developing MS, improve early diagnosis and develop effective treatments and interventions to slow or prevent disease progression through funding a National MS Biobank, a Neurological Mission and improved neurological data.
These case studies show how delays in MS diagnosis affect people and why investment in research and neurological data is needed to support earlier diagnosis and intervention.
Sarah lives with MS and is a member of the MS Australia Lived Experience Expert Panel
I vividly remember Christmas Eve 2013. Three excited children, stockings laid out beside their beds, and the familiar chaos of family life in full swing. And then something didn’t feel right. My left arm began to tingle – strangely, persistently. By that night, worry had taken over. After hours of anxious rumination about early-onset cardiac disease, I presented to the emergency department.
The assessment was brief. I was told it was “stress”. I went home reassured that I wasn’t about to have a heart attack, and Christmas dinner eventually went ahead. I thought I had dodged a bullet. In reality, I had only taken the first step into a long and uncertain diagnostic journey.
Over the months that followed, the symptoms did not resolve. Instead, they multiplied. Desperate for answers, I was referred from one specialist to another, entering what felt like an endless cycle of tests, scans, appointments and waiting. Each new consultation raised more questions than it answered.
What followed was nearly twelve months of diagnostic limbo. Blood tests, multiple MRIs, a lumbar puncture, nerve conduction studies – all returned results that were inconclusive or ambiguous. Possible diagnoses ranged widely, from brain tumour and lupus to psychiatric illness and syphilis – not something I ever expected to feature in the conversation! Multiple sclerosis lingered on the list, but without clear evidence of multiple demyelinating events or definitive biomarkers, it could not yet be confirmed.
After a brief period of relative calm, another relapse occurred. By then, the accumulation of evidence finally met the diagnostic criteria. At age 34, I was formally diagnosed with multiple sclerosis.
The diagnosis brought mixed emotions. There was grief and fear, but also profound relief. After a year of uncertainty, I finally had an explanation- and access to disease-modifying therapies that could help slow progression. Looking back, I consider myself fortunate: my MS was ultimately caught relatively early, and twelve years on I am living well, without major disability, under the care of a neurologist I trust.
My experience highlights a critical challenge in MS care: the path to diagnosis is unnecessarily long, stressful and uncertain.
For many people, the first neurological event is not enough to trigger a diagnosis, even though irreversible damage may already be occurring. The absence of accessible, large-scale, well-characterised biological samples means researchers and clinicians are still working without the tools they need to identify MS earlier, or to predict who is most at risk.
This is why investment in MS research, including the establishment of a National MS Biobank, is so important. A biobank would enable researchers to link biological samples with clinical, imaging and lived-experience data over time, accelerating the discovery of biomarkers, improving diagnostic accuracy, and opening the door to prevention and earlier intervention.
With advances in technology and training, there is real potential to make the diagnostic journey for future generations far less fraught than mine was. Increased research funding and national infrastructure are essential to ensure that people with emerging MS symptoms are no longer left in limbo – waiting months or years for answers that could change the course of their lives.
Sienna lives with MS and is a member of the MS Australia Lived Experience Expert Panel.
My journey with MS began when I was just six years old. It started with strange visual disturbances – flashing lights and dots that clouded my world. What followed was a whirlwind of doctor’s appointments and neurological tests, but at nine, the doctors concluded it was psychological.
For four years, until I was nine years old, I underwent behavioural therapy, being told it was all in my head. Despite the support of my paediatrician, the trauma of being dismissed by medical professionals made me keep my struggles to myself, fearing I wouldn’t be believed.
At thirteen, I lost all feeling in my right hand, a stark reminder that something was seriously wrong. Yet, once again, a neurologist told me it was psychological. For years, I was unable to write or use my hand as I wasn’t receiving the right treatment.
Then, at fourteen, numbness crept from my head to my toes. This was the moment I knew it was not in my head. Another trip to the neurologist yielded little hope until an MRI uncovered the truth – multiple lesions on my brain and spine, finally explaining my symptoms.
The whole diagnosis process was not easy for me, as I was young, and many doctors didn’t believe me. It took eight long years to receive a diagnosis, and throughout my journey, my mum and family were my biggest support system and they never stopped fighting for me, pushing for better care and accommodations. But I also learned the importance of self-advocacy – of trusting myself and knowing my body.
Finding medical professionals – such as a neurologist I could trust and be comfortable with, and MS nurses who I can share my concerns with – has been critical. MS has impacted every aspect of my life – friendships, education, even my ability to work.
The lack of awareness and support for young people with MS is staggering, and I’m determined to change that. No one should face the hurdles I did, especially in school. The education system has very poor special considerations for children with disabilities, and I believe there is much that needs to be changed.
Luckily for me, I had parents and a school who fought for me to get better considerations, which were still not good enough. However, for other children with MS, I know they do not have these supports, making them unable to complete school. For me, helping others with MS through school is very important as I know the struggles I faced, which nearly led me to drop out.
Now, I strive to be a voice for others with MS, ensuring they receive the understanding and assistance they deserve. It’s a journey filled with challenges, but with the love of my family and the support of the MS community, I know we can make a difference.
Improved access to MS Nurses across Australia for people living with MS through additional nurses, a MS Nurses Pilot Project and the development of a MS Nursing microcredential.
These case studies highlight the role MS Nurses play in supporting people living with MS and why improved access to MS Nurse care is needed.
Tim is a MS Nurse Practitioner and a member of the MS Australia MS Nurses Work Group.
Tim was one of the first MS Specialist Nurses and the first MS Nurse Practitioner in Australia. He works as a MS Nurse Practitioner across two Queensland hospitals with his MS nurse-led and patient-focused clinics.
Tim provides nursing services to patients from the time of diagnosis and across their life span and has worked with some patients for over 20 years. Tim works with nearly 1,000 MS patients across two diverse hospital districts providing individualised care. He works with a range of other clinicians including Neurologists, GPs, nurses and allied health.
As a nurse practitioner Tim provides patients with a wide range of services including assessing, planning and treating MS symptoms, prescribing (some) symptomatic therapies and ordering pathology and some radiology.
Tim further contributes to the work of MS nurses through support, mentoring and education for other MS nurses and pioneering the development of web-based education for people living with MS.
Belinda is a MS Nurse and the Chair of the MS Australia MS Nurses Working Group
Belinda works in both a clinical role as a MS nurse and in research management, overseeing MS clinical trials at a Victorian hospital. Belinda has been working with people living with MS for more than 18 years and supports them from the time of diagnosis and helps them to understand the unique complexities and challenges of MS.
Belinda manages a team of MS nurses who provide support to people living with MS and specialist MS Nurse education through preceptorship programs for new MS Nurses and by helping them develop a broader understanding of MS care and clinical trials skills by providing training by observation in their large multidisciplinary clinic.
Belinda works closely with other services, general practice, local community, national and international partners. As part of her role Belinda is actively engaged in MS research including management of the research program and oversight of clinical trials. Belinda has also been involved in research that explores the delivery and value of MS nurse care in Australia and is a co-author of the MS Nurse Care in Australia Report.
Belinda was the recipient of MS Australia’s 2025 MS Advocacy Award, recognising her more than 18 years of contribution to improving MS care through clinical leadership, education and national advocacy focused on better outcomes for people living with MS
A better NDIS for people living with MS through improved NDIS pricing, a better NDIA workforce, improved planning and supports, a better disability sector workforce, housing and living supports and assistive technology. Improved income support, poverty measures and implementing the recommendations of the Disability Royal Commission.
These case studies show how NDIS planning and support decisions affect people living with MS and why improvements to pricing, planning and supports are needed.
John* lives with MS and is an NDIS participant whose goals focus on continuing in employment and study, keeping his mobility, and slowing the impact of his condition so he can stay healthy and independent. John works in construction, which is physical work, so maintaining his strength is essential for him to stay employed. He works half days on site and half days in the office because his mobility has declined. The agreed approach was to work with allied health to build a targeted plan to improve his mobility, strength, and endurance.
John was approved for a 12-month NDIS plan in 2024 with a total budget of $9,300, with all funds allocated to Improved Daily Living Skills.
In May 2025, John made a plan change request so that he could submit an occupational therapy assessment and physiotherapy report detailing an increased need for therapy supports. However, an administrative error by the NDIA resulted in the plan change request being closed before the documentation was submitted and considered. As a result, when John had a new plan approved in November 2025 that did not take into consideration his needs
John’s new plan has increased marginally to $21,700 over 24 months and does not take into consideration the need for more therapy supports. Additionally, some of the current therapy supports that were assisting John have been replaced by a therapy assistant. The evidence-based and individualised support provided by a qualified allied health professional cannot be replaced by a therapy assistant. A request for a psychologist was rejected based on the support not meeting NDIS criteria, because ‘another government service is responsible for providing this’. This rationale conflicts with the approved NDIS goals in John’s plan.
John received an NDIS decision letter that contradicts the funding details in the plan’s budget breakdown and states that ‘therapy supports from Improved daily living skills have not been included’.
Without the increase to John’s therapy supports, he cannot maintain his mobility, strength and endurance, and this will impact his ability to maintain employment and stay healthy and independent.
*John’s name has been changed to protect his identity
Janine lives with MS and is a member of the MS Australia Lived Experience Expert Panel
Janine is a Taekwondo Paralympic athlete who has won four World Championships, and at the Tokyo 2020 Paralympic Games won Australia’s first-ever Paralympic medal in the sport of Taekwondo. She now travels the world assessing para-athletes to determine if they meet classification requirements. She is also a mentor, coach and inspirational speaker.
Janine requested more capacity-building funds for therapy supports to help her maintain her independence. Janine was contacted by an NDIA planner who had a 10-minute conversation with her and asked her a few questions about her plan review. She was told during this phone call that her therapy supports would be increased.
When Janine received her new plan, the NDIA had reduced her physiotherapy supports from two hours per week to 12 hours a year. She was also given 52 hours a year for a therapy assistant to supervise a therapy program or accompany her to the gym, and a support worker to assist with daily activities, such as grocery shopping. The evidence-based and individualised support provided by a qualified allied health professional cannot be replaced by a therapy assistant or support worker.
There was no formal planning session with Janine prior to her being sent this plan. The NDIA planner made assumptions about her needs and individual goals. Janine wants to be able to independently undertake daily tasks and not rely on a support worker, all of which was clearly stated in Janine’s NDIS goals.
The lack of access to allied health professionals has already resulted in Janine sustaining injuries after a heavy fall on Boxing Day. The changes in Janine’s plan will result in a further reduction in her independence, decreased quality of life, increased mental health issues and ultimately reliance on higher support needs due to the progression of her MS.
“My new NDIS plan feels generic, as if it was copied from someone else rather than made for me. I’m frustrated because I put a lot of time and effort into preparing thorough evidence and reports for my plan review, yet it seems like none of it was considered. Now, I have an NDIS plan that doesn’t suit my needs and leaves me worse off.”
The NDIA has a poor understanding of MS and other neurological conditions and how best to support people under the NDIS. These quotes from our LEEP members outline the issue
Rachel lives with MS and is a member of the MS Australia Lived Experience Expert Panel
The NDIS needs to understand that MS is a progressive neurological condition. It does not stay the same over time, and without the right supports and treatments, the condition can decline. Ongoing treatment isn’t optional – it plays a crucial role in slowing the decline of MS and maintaining daily function for as long as possible.
Because MS isn’t always well understood by the NDIS, I work hard to make sure I can clearly explain what’s happening with my MS. I take detailed notes throughout my plan period so I can track changes and symptoms as they arise. I also make sure I get access to medical reports earlier than I technically need them, even around the mid‑point of my plan. This helps me be fully prepared to communicate my needs and demonstrate the real impact of MS on my daily life.
Anne lives with MS and is a member of the MS Australia Lived Experience Expert Panel
The NDIS needs to know that the agency cannot treat everyone with MS the same. MS affects people differently, and the level of support someone needs can change dramatically over time. For almost 30 years, I didn’t need any help at all. But as my MS progressed into Secondary Progressive MS, and as I’ve gotten older, my needs have increased significantly.
When a person says they need something, the NDIS’ response cannot simply be based on the fact that they have MS. It must be assessed at an individual level, because MS is not a one‑size‑fits‑all condition. Each person’s experience, symptoms, progression and functional impact are unique.
I understand that truly personalising decisions might slow down approvals, and the system already struggles with delays. If the NDIS wants to provide fair, accurate and meaningful support, it must recognise that MS varies widely and cannot be managed with blanket assumptions.
Rachel lives with MS and is a member of the MS Australia Lived Experience Expert Panel
“NDIS needs to understand that living with MS means the symptoms can be invisible. Symptoms can also change from day to day. MS isn’t just about physical symptoms, but it affects many areas of life. The NDIS needs to understand that participants who are approved for a particular type of treatment through the scheme, that you will likely need it long term. The supports can’t just be provided for 12 months and then taken away.”
Julie lives with MS and is a member of the MS Australia Lived Experience Expert Panel
Living with MS is extremely different for every person. No two experiences are the same. Symptoms can shift quickly, and someone’s abilities may change from one day to the next day.
The NDIS needs to understand the wide range of symptoms that MS can cause, as well as how unpredictable these symptoms can be. It’s equally important that the NDIS learns about the variety of supports that work best for people with MS, so plans reflect individual needs.
Jodi lives with MS and is a member of the MS Australia Lived Experience Expert Panel
The NDIS needs to know that MS symptoms are highly variable and can fluctuate from day to day. The condition can’t be cured, and people often have to manage unpredictable changes in fatigue, pain, mobility, and cognition over their entire lifetime.
The NDIS also needs to understand that managing a plan can feel like having a part‑time job – especially during reassessment periods when participants are expected to gather reports, fill out forms, provide evidence, and coordinate multiple appointments.
For people living with MS‑related fatigue, this administrative burden is not just inconvenient, it is genuinely exhausting and can worsen MS symptoms.
The NDIS needs to recognise that NDIS plans and processes should be designed in a way that reduces unnecessary strain, rather than adding to the fatigue that is already part of living with a disability.
Jess lives with MS and is a member of the MS Australia Lived Experience Expert Panel
Many of the disability impacts of MS aren’t visible to most people. Symptoms such as fatigue, pain and spasticity may not be obvious from the outside, but they are genuinely disabling and debilitating.
The NDIS needs to understand that providing access to therapies earlier can prevent deterioration and may reduce the amount of funding required in future years. Early intervention is cost‑effective and protects long‑term function.
The NDIS also needs to understand how their own system is difficult to navigate. The processes, paperwork and administrative steps are too complex for people experiencing cognitive impairment or cognitive fatigue – both common symptoms of MS. This complexity means people are often forced to rely on family members and informal supports to fill the gaps, which should not be a substitute for proper formal supports.
Funding should be based on a person’s worst day with MS, not their best. This ensures that services are available and accessible when a flare or relapse suddenly increases their needs. Plans must also be flexible and able to be adjusted quickly.
Finally, the NDIS needs to value lived experience. Decisions should be collaborative, with participants treated as experts in their own condition.
Brigitte lives with MS and is a member of the MS Australia Lived Experience Expert Panel
The NDIS needs to understand that every person with MS is an individual with different needs. What might be considered an “everyday item” for one person could be a life‑changing support for someone else. There is no single template that works for everyone.
The system needs people with lived experience or genuine understanding involved in decision‑making. Participants should not have their futures decided by people who only see paperwork, not the reality of living with MS.
Most importantly, listen to the individual participant. Do not assume what they need, what they can do, or how their MS affects them. Each person is the expert on their own condition, and their voice should guide the supports they receive.
Deanna lives with MS and is a member of the MS Australia Lived Experience Expert Panel
“The NDIS needs to understand that MS is a fluctuating condition. Symptoms don’t remain stable. MS symptoms can change significantly over time. People with MS can experience periods of relapse where their symptoms become temporarily but extremely worse. These relapses can have a major impact on daily functioning, even if the person appears stable at other times.”
Carol lives with MS and is a member of the MS Australia Lived Experience Expert Panel
The NDIS needs to know that MS is highly variable, both between different people and throughout the course of a person’s disease. MS symptoms and functional ability can change significantly over time.
Erin lives with MS and is a member of the MS Australia Lived Experience Expert Panel
The NDIS needs to know that everyone with MS is different, and they should never assume they already know what a person needs. The NDIS needs to genuinely listen to people living with MS and understand that each person’s symptoms, progression and daily challenges are unique.
On one hand, the NDIS says it wants to help people live independently, but on the other hand, it often removes the very therapies, like physiotherapy and other capacity‑building supports, that make independence possible. Increasing home assistance while reducing essential therapies doesn’t align with the goal of maintaining or improving function.
The NDIS needs to recognise that people with MS rely on therapies to stay mobile, safe and independent. Removing these supports can lead to loss of capacity, which ultimately increases the need for more intensive and more expensive assistance later on.
Kate lives with MS and is a member of the MS Australia Lived Experience Expert Panel
“The NDIS needs to know that MS is unpredictable, highly individual, and affects people in very different ways. MS is a new adventure every day, and the disease course varies widely from person to person. Because of this, applying blanket funding rules or rigid service‑access criteria simply doesn’t work for participants living with MS.
People in rural and regional areas also need flexibility to access services and therapies in ways that might fall outside the NDIA’s usual ‘approved’ definitions. Participants living outside major cities often have limited provider options, and sometimes the only viable therapy or support doesn’t fit neatly within standard categories. Without flexibility, people may be unable to access an approved support which could deny them the service they require and might leave them with funding they can’t actually use.
It is also important that LACs who work with people living with MS understand what the condition looks like day-to-day. MS can change quickly and can involve a mix of fatigue, pain, cognitive challenges, mobility issues and relapses. Without that understanding, the impact is often underestimated. Training every LAC in every condition may not be realistic, but having dedicated teams who specialise in certain conditions, like neurological conditions, would help ensure more informed, appropriate, and consistent support.”
Janine lives with MS and is a member of the MS Australia Lived Experience Expert Panel
The NDIS needs to understand that MS is a progressive disability, but it progresses differently for every person. There is no single pattern, no predictable timeline, and no standard way the condition unfolds. In addition, the NDIS needs to recognise that MS does not improve over time, it is permanent, and while symptoms may fluctuate, the underlying condition does not get better.
Despite this, NDIS funding decisions are often based on whether a person’s disability will “improve.” This approach doesn’t work for people living with MS. Many therapies are not intended to produce improvement, they are essential to maintain function, prevent decline, or slow disease progression. Removing or reducing these therapies can cause people to deteriorate faster, which ultimately leads to higher support needs and costs.
NDIS plan reviewers also need to understand what each allied health professional actually does. A physiotherapist is not the same as a neurophysiotherapist, and neither of them does the same work as an exercise physiologist. Each profession plays a different role in managing MS, and each one supports a different aspect of function, mobility, strength or symptom management.
Yet participants are often told that these therapies are ‘the same’ and therefore can’t all be funded. This misunderstanding leads to the NDIS making inappropriate plan cuts and removing vital supports that people with MS rely on to stay safe, independent and mobile.
Improved access for the 220,000 older Australians waiting for Support at Home Packages and assessments and ensuring equity of services and funding for older people living with disability.
This case study highlights gaps in aged care supports for people living with progressive neurological conditions and the need for improved funding support.
Susan* is an older person who lives with MS and is ineligible for a NDIS package. After her experiences navigating the aged care system, she relinquished her home care package.
My experience with My Aged Care as a person living with MS was deeply frustrating and ultimately harmful to my wellbeing. MS is a progressive condition, and it important to manage your symptoms which requires access to specialised activities, therapies and assistive supports that maintain strength, independence and daily functioning. However, My Aged Care is built for frailty and age-related decline, not progressive disability.
My goals – to stay physically strong, remain active in the community, continue voluntary work and preserve independence – align with the NDIS, but the aged care system could not support them. My package was means-tested, capped, and unable to fund the disability-specific supports I rely on.
The most critical therapy for me is an intensive neuro-exercise program delivered three times a week. It helps maintain muscle strength, mobility, hand function and significantly slows deterioration. Yet My Aged Care had no mechanism to include this evidence-based therapy in my plan.
I also rely on remedial massage to manage spasms, pain, gait problems and muscle overuse. Although my GP referred me to an MS-specialist therapist, the system required me to use a physiotherapy-aligned massage provider with rigid session caps. The therapist I was permitted to use had no understanding of MS and the treatment made me feel worse.
Supports for meal preparation were similarly ineffective. Because my fatigue, weakness and dexterity issues make cooking dangerous, I needed reliable help – yet constant changes in workers, arbitrary participation rules and lack of cooking skills made the service stressful and unhelpful.
Also, half my funding went to management fees, yet I received no real plan management. After a year, it became clear that My Aged Care restricted my choices, limited essential supports, and consumed my resources. I surrendered my package and now self-fund supports simply to regain control and dignity.
*Susan’s name has been changed to protect her identity
Nigel lives with MS and is a member of the MS Australia Lived Experience Expert Panel
Nigel Caswell has lived with multiple sclerosis (MS) for more than six decades, with symptoms traceable back to the mid1970s and a formal diagnosis in 1993. When the National Disability Insurance Scheme (NDIS) commenced in 2013, he was already over the age of 65 and therefore automatically ineligible.
Nigel’s experience reflects a broader systemic gap for older Australians with longstanding disability who aged out of the NDIS before it began, leaving them reliant on aged care programs, health services, and sporadic state-based supports that do not operate as a comprehensive disability system.
The most immediate and significant impact of this exclusion has been financial. Without access to NDIS-funded supports, Nigel has personally paid $73,950 for essential mobility equipment and home modifications, including two wheelchairs, multiple mobility scooters, and major bathroom accessibility renovations. This figure does not include the cost of two handcontrol vehicle conversions that he and his wife also funded themselves. These costs are typically covered under NDIS capital supports and represent a major financial burden for someone managing a progressive neurological disability.
Nigel’s daytoday supports have also been limited. Aged care assessments have taken between six and eight months, and the primary home support he currently receives is two delivered meals per week for him and his wife. Apart from a modest contribution through the Continence Aids Payment Scheme, he has had to navigate fragmented systems that do not provide the breadth or consistency of supports an NDIS plan would offer. Nigel believes that, had he been NDIS-eligible, practical supports like meal assistance and capacity-building therapies would have begun earlier and been far more comprehensive.
To maintain his health and wellbeing, Nigel privately pays for a gym that provides him access to a physiotherapist and weekly aqua aerobics sessions. Each session costs $35, and his private health insurance only reimburses a small proportion of the membership and session fees. He receives a limited number of subsidised physiotherapy sessions each year, after which he pays entirely out of pocket. Regular exercise has become increasingly important as his mobility has reduced, due to a combination of MS progression and age.
Emotionally, Nigel describes missing out on the NDIS as deeply disheartening. He recalls feeling like a “secondclass citizen,” as though society had decided that people over 65 were not worth investing in. Despite this, he maintains a strong sense of purpose and connection through leadership roles in the MS community and his retirement village. He believes his high level of socialisation has helped him manage the long-term demands of MS and been beneficial for both his mental and physical health.
Nigel’s story reflects a pattern affecting others in similar circumstances, who were also excluded due to age at the time the NDIS came into effect. Their experiences highlight the consequences of an age-based exclusion in what is otherwise intended to be a needs-based system. Nigel’s experience shows how substantial personal costs, fragmented support pathways, and delayed access to basic services can shape the lives of older Australians with significant disability – particularly those who, like Nigel, have lived with MS for most of their adult lives.
Overall, his experience underscores the practical and emotional burden that arises when long-standing disability is met with systems that were not designed to support older people with complex, progressive conditions. It also highlights the resilience of individuals who have had to “patch the gaps” they encounter, often at considerable personal cost.
