Over the past ten years, MS Australia has actively advocated on behalf of people living with MS for improvements to the NDIS.
MS Australia’s ‘A better NDIS for people living with MS’ campaign continues to call for reforms to improve the NDIS for the MS community.
MS Australia welcomed the final report of the NDIS Review and was pleased to see some strong alignment with our asks. However, we believe there are still outstanding issues to be addressed to ensure the NDIS meets the needs of people living with MS and other neurological conditions:
NDIS Pricing
A flexible, participant-focused and sustainable pricing model is essential to ensure people living with MS can access high-quality, evidence-based supports. Current pricing settings do not always reflect the real cost of delivering specialised care, limiting service availability and innovation. The case studies demonstrate why pricing reform is critical to protect participant choice, quality and long-term sustainability
These examples from our Member Organisations highlight the issues with the current NDIS Pricing.
MS Australia’s state and territory Member Organisations (MS WA, MS Plus and MS Queensland) are registered NDIS providers and deliver a range of supports and services to people living with MS and other neurological conditions.
They want to ensure they provide the highest level of service to people living with MS and support them to live with dignity and respect. Effective and appropriate NDIS pricing arrangements are an integral part of this work.
Issues with current NDIS pricing include:
Therapy Supports
People living with MS benefit from regular access to therapy supports delivered by qualified allied health professionals including exercise physiologists, physiotherapists, and occupational therapists. Participants report having their therapy supports drastically reduced, removed and/or replaced with a therapy assistant. Additionally, plans are being developed without consideration of medical reports and participants individual goals. The case studies highlight the impact of reducing and removing these supports:
John* lives with MS and is a 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 psychologist was rejected based on the support not meeting NDIS criteria, because ‘another government service is responsible for providing this’. This rationale conflicts the approved NDIS goals in John’s plan.
John received a NDIS decision letter which contradicts the funding detailed in the plan’s budget breakdown and states that ‘therapy supports from Improved daily living skills has 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 a 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 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.”
NDIA
A sufficiently trained and skilled NDIA workforce is essential to delivering fair and consistent outcomes for people living with MS. Participants report decisions made without full consideration of medical evidence and limited understanding of progressive neurological conditions. The case studies highlight why improved training and disability awareness across the NDIA is urgently needed.
Kerry lives with MS, is a NDIS participant and also works as an advocate for people living with MS. She experiences continued frustration in her engagement with NDIA staff, as Local Area Coordinators (LACs), Planners and Delegates do not clearly understand disability and have received inadequate training:
‘It is very clear there is a huge gap in education. Every client case requires me providing education and advocacy, with NDIS planners saying things like “what is an EDSS, sorry I have no disability background” and “Can I let you explain (planning meeting) because I am learning from you”. ‘
Kerry finds that her clients are usually denied access 2-4 times before a successful application, even with the support of an advocate. Many clients have to take their case to the Administrative Review Tribunal to gain access. Kerry also finds that participants wait months for a response and only receive one when they get an advocate involved. She has also experienced the NDIA actively trying to convince participants they don’t need to involve an advocate in their interactions with the NDIA.
Kerry’s experiences with the NDIA have also impacted her own NIDS plan as she has avoided a much-needed plan review for fear that her plan will be significantly cut. Kerry believes that the system needs to move from crisis response to prevention to avoid people are waiting until they get worse to get help.
*Kerry’s name has been changed to protect her identity
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.
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.
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.
The NDIS needs to understand a fundamental truth: no two people with MS are the same. It cannot assume it already knows what someone needs based on a diagnosis alone. Genuine support starts with listening — really listening — to people living with MS, because each person’s symptoms, progression, and daily challenges are unique.
Right now, there’s a disconnect. On one hand, the NDIS says it wants to support independence. On the other, it removes the very therapies — like physiotherapy and other capacity-building supports — that make independence possible. Increasing home assistance while cutting essential therapies doesn’t preserve function; it accelerates decline. That approach doesn’t build capacity. It manages deterioration.
People with MS rely on ongoing therapies to stay mobile, safe, and independent. These supports are not optional extras — they are preventative care. When they’re taken away, people lose function. And when capacity is lost, the need for more intensive, more costly supports inevitably rises. Investing in therapies now isn’t just compassionate — it’s practical. It protects independence today and prevents far greater costs tomorrow.
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.
NDIS Planning and Supports
Improved NDIS planning and supports must be evidence-based and focused on the individual needs of participants. People living with MS report plans developed without proper consideration of medical reports, goals or the progressive nature of their condition. The case studies show why a stronger understanding and consistent application of evidence is critical to achieving participant outcomes.
Emma* is a woman living with MS whose recent MRI results show clear neurological deterioration, including new brain lesions, cervical spine involvement, brain atrophy, vestibular dysfunction, continence decline, and severe fatigue. Her neurologist has raised concerns that her current disease-modifying therapy may no longer be effective, signalling a possible shift toward progressive or treatmentresistant MS. Despite this compelling clinical evidence, Emma’s NDIS supports have remained unchanged—and in some cases have been reduced.
Throughout her engagement with the NDIS, Emma has been repeatedly required to rejustify her disability, even as objective evidence shows worsening function. NDIS Planners have displayed limited understanding of degenerative MS, often misinterpreting fluctuations in her function as ‘improvement’ rather than typical patterns of decline. As a result, essential supports relating to personal care, mobility, continence, therapy, and fatigue management have not been funded at levels recommended by her treating clinicians. Compounding this, NDIS allied health pricing freezes have forced many providers to withdraw services, limiting Emma’s access to specialised support.
Emma’s initial NDIS plan significantly underestimated her needs. Despite highquality occupational therapy and neurophysiotherapy assessments demonstrating severe functional impairment, falls risk, cognitive challenges, and fatigue, the plan provided minimal Core and Capacity Building funds. It failed to acknowledge the impact of her symptoms on daily living or her responsibilities as the sole parent of a young child.
After months of decline and extensive advocacy, Emma eventually received a revised plan that roughly doubled her funding. However, even this increased funding remains well below what is clinically recommended for someone with progressive MS, no informal supports, high therapy needs, and fulltime parenting responsibilities. Further harm resulted from the NDIA placing her plan under a restricted funding period, limiting her to just ten hours of weekly support until an internal NDIS review is completed. This has severely impacted her ability to maintain her home, attend therapy, manage fatigue, and safely care for her child.
Emma’s experience illustrates significant systemic failures within NDIS planning for individuals with complex neurological conditions. Her case highlights the urgent need for MSinformed decisionmaking, meaningful integration of clinical evidence, and funding structures that reflect the realities of degenerative disease.
*Emma’s name has been changed to protect her identity
Natalie* lives with Secondary Progressive MS, characterised by chronic fatigue, mobility impairment, cognitive load, pain, and vascular complications. She also works as a NDIS support coordinator, providing her with a system level perspective in addition to her lived experience.
Natalie’s allied health practitioners and neurologist have been recommending 12 hours of support a day for the last four plans, however the most hours she has been funded for is five hours a day. She has a 5-year-old child and a husband who works full time and sometimes Saturdays. Her husband has carer fatigue and is extremely overwhelmed. He is also a father and therefore does not have as much time to support Natalie. Multiple applications to the NDIS with well written reports from neurologists, multiple occupational therapists, physiotherapists, neuro physiotherapists and psychologists have been submitted. Despite this, Natalies continues to have an underfunded plan.
Blood pools in Natalie’s feet when seated in unsuitable positions, requiring a custom-built wheelchair (MS related). To address this, she undertook extensive home trials of a custom-built wheelchair. She was informed by the NDIA that the wheelchair had been approved, only to receive a call the next day stating the approval had been withdrawn because the device ‘costs $50,000 — that’s a house deposit’. She was told she must undertake further trials and provide extensive additional justification. This occurred while her support coordinator was overseas, leaving her to navigate the process alone. The emotional toll was significant, and she ultimately stopped pursuing the wheelchair despite its medical necessity.
Natalie has also faced inaccessible house inspections, long delays for housing supports, and planning decisions that disregard MS progression. Planners frequently misunderstand Secondary Progressive MS, expecting functional improvement or stability in a condition that only worsens over time. She has had little trouble receiving Supported Disability Accommodation (SDA) funding but finds it difficult to find accommodation with the level of funding she receives as she went from being funded for ‘High Physical Support’ category to the lower funded ‘Fully Accessible’ category. Her plan also includes restrictive funding periods that don’t take into account the fluctuating nature of MS.
Natalies is currently going through the Administrative Review Tribunal to improve her plan. She is tired, fatigued and knows that when the NDIS works it changes her life for the better but the stress of having to ensure no over-utilisation and reducing where possible makes it extremely difficult.
Pricing freezes have impacted her personally and professionally. She has experienced reduced access to therapy and Support Coordination in her own plans, and as a provider, she sees the ongoing exit of therapists, plan managers, and skilled workers due to financial unsustainability. Income support remains a pressure point for people living with MS, with many of them living below the poverty line, with disability-related costs on top of everyday expenses.
*Natalie’s name has been changed to protect her identity
Housing and Living Supports
People living with MS must be able to maintain their independence and choose the living arrangements that best meet their short-term and long-term needs. However, participants report delays, arbitrary decision-making and inconsistent application of SDA eligibility rules. The case studies highlight the urgent need for housing and living supports that align with legislation and participant goals.
Morgan* lives with Secondary Progressive MS, chronic pain, severe fatigue, continence issues, cognitive impairment, psychosocial disability, and mobility challenges. After the death of her mother, she is required to leave her home due to the property being sold. She has no informal supports and lives in high distress.
Morgan submitted a Home and Living application for Specialist Disability Accommodation (SDA). The application exceeded legislated decision timeframes and was diverted to a senior internal reviewer rather than a specialised Home and Living delegate. The decision maker rejected the SDA request because the participant was ‘not in a wheelchair’.
Part 2 of the NDIS Specialist Disability Accommodation Rules 2020 outlines the eligibility requirements for SDA under the NDIS. The rules state that a participant is eligible to receive SDA if the participant ‘has an extreme functional impairment or has very high support needs’. There is no reference in Part 2 to participants being required to be wheelchair users.
Morgan clearly meets the eligibility requirements through significant functional impairment, inability to live safely in standard housing, and reliance on clinical support. The delay in approving Morgan’s home and living supports puts her at severe risk of homelessness and contributes to increased psychological distress and cognitive overload.
Morgan’s support systems are further impacted as pricing freezes have left her with insufficient Support Coordination and therapy hours. She is further impacted by the regular turnover in NDIS provider and staff and providers who are unwilling to support her complex needs. Additionally, her plan includes restrictive funding periods that don’t take into account the fluctuating nature of MS.
*Morgan’s name has been changed to protect her identity
Mary* lives with MS progressive MS, chronic pain, mobility decline, continence issues, fatigue, and repeated hospital admissions for infections and falls risk. She lives alone and relies heavily on formal supports.
Mary requires home modifications to minimise her falls risk and enable safer bathroom access. However, she is too afraid to submit a Home Modifications request because she fears that the NDIA will cut her overall plan if it is reviewed. Her occupational therapist has confirmed this fear is reasonable given recent funding patterns. This is a common problem faced by NDIS participants living with MS who often avoid asking for necessary supports because they fear their plans being cut and the lack of understanding by NDIA planners on what home and living supports they need.
Mary requested funding to undertake Sunday community participation that involved attending local markets with a support worker. The NDIS reviewer refused the request on the grounds that it was ‘too risky’ for her to walk around a market. Instead of addressing the risk through funded appropriate supports, the NDIA removed the support altogether. This fear driven avoidance of essential supports prevents Mary from community participation, reduces her independence and isolates her further.
Mary’s NDIS plan does not follow the recommendations of health professionals and the clinical evidence she has provided. This includes funding for clinical care, personal care, therapy supports, continence supports and fatigue-related supports at levels well below those recommended. This ongoing mismatch places her at significant risk of further decline. Additionally, her plan includes restrictive funding periods that don’t take into account the fluctuating nature of MS.
*Mary’s name has been changed to protect her identity
Disability Workforce
A high-quality disability workforce is essential to meeting the evolving needs of people living with MS. Participants report difficulty accessing experienced providers and consistent, specialised care. The case studies demonstrate why increased investment to attract, train and retain a skilled workforce is critical.
MS Australia is extremely disappointed with the release of the 2024-25 NDIS Pricing Review.
Together with the broader sector, we are concerned by the decision to reduce pricing for essential therapy supports including physiotherapy, dietetics and podiatry.
These reductions, along with no increases in pricing for level 2 and level 3 support coordination and plan management, will put further pressure on our Member Organisations who deliver essential services to people living with MS and other neurological conditions.
MS Australia is calling on the NDIA to urgently consider the impacts of these pricing arrangements and to establish clear, independent pricing, including releasing the Independent Health and Aged Care Pricing Authority’s review of NDIS pricing.
Find more information on our NDIS pricing advocacy here.
MS Australia has provided a range of submissions on the NDIS, including to the National Disability Insurance Agency, the NDIS Review, and the Joint Standing Committee on the National Disability Insurance Scheme.
These submissions draw on the experiences and expertise of MS Australia’s Lived Experience Expert Panel (LEEP) and our state and territory Member Organisations.
Our State and Territory Member Organisations are registered NDIS providers that deliver a range of NDIS services for people living with MS and other neurological conditions.
Services vary across each MO and may include support coordination, plan management, allied health, employment support, in-home care, social support, respite and supported disability accommodation. You can find more information at the links below:
