Impact of MS on pain, independent living, mental health, and relationships (DRO advocacy) | External submission

Submission 438

National Disability Insurance Scheme

Amendment (Securing the NDIS for

Future Generations) Bill 2026

May 2026

Submission 438

What is MS?

Multiple Sclerosis (MS) remains one of the most common causes of neurological disability in the young adult population (aged 18–40 years) with over 2.9 million people affected worldwide. More than 37,756 Australians live with MS and over 7.6 million Australians know someone or have a loved one with this potentially debilitating disease.

Three times as many women have MS than men. Symptoms vary between people and can come and go; they can include severe pain, walking difficulties, debilitating fatigue, partial blindness and thinking and memory problems. For some, MS is characterised by periods of relapse and remission, while for others it has a progressive pattern of disability. MS robs people of quality of life, primarily driven by the impact of MS on pain, independent living, mental health and relationships.

MS  Australia  is  Australia’s  national  multiple  sclerosis  (MS)  not-for-profit

organisation that empowers researchers to identify ways to treat, prevent and cure MS, seeks sustained and systemic policy change via advocacy, and acts as the national champion for Australia’s community of people affected by MS.

MS Australia represents and collaborates with its state and territory MS Member Organisations, people with MS, their carers, families and friends and various national and international bodies to:

Fund, coordinate, educate and advocate for MS research as part of the worldwide effort to solve MS
Provide the latest evidence-based information and resources
Help meet the needs of people affected by MS

George Pampacos Rohan Greenland

President Chief Executive Officer

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Submission 438

NDIS Amendment Bill 2026

Executive Summary

MS Australia’s submission to the Community Affairs Legislation Committee on the NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026 (NDIS Amendment Bill) focuses on making sure reforms strengthen the NDIS without reducing the rights, independence or wellbeing of people with disability. Drawing on the lived experience of people with MS and the expertise of MS Australia’s Member Organisations, the submission supports efforts to address fraud and unnecessary spending, but raises concerns about changes to assessments, supports, planning pricing and decision-making.

The submission stresses that MS and other neurological conditions are complex, progressive and often fluctuating, meaning people’s needs cannot be met through rigid rules, narrow eligibility criteria, or assumptions about informal care. It argues that reforms must be supported by clearer legislation, stronger safeguards, proper consultation with Disability Representative Organisations and comprehensive NDIA staff training to ensure decisions are fair, consistent and informed by lived experience.

MS Australia’s key recommendations include a formal government response to the NDIS Review, improved disability awareness across the NDIA, removal of assumptions about informal supports, delaying major reforms to allow proper consultation and implementation, transferring pricing oversight to the Independent Health and Aged Care Pricing Authority and reviewing the Bill to ensure it complies with Australia’s obligations under the Convention on the Rights of Persons with Disabilities.

Lived Experience

This submission draws on the experiences and expertise of MS Australia’s Lived Experience Expert Panel (LEEP) and our state and territory Member Organisations. The LEEP is a panel of people who either live with MS or are a carer for someone living with MS who provide MS Australia with expert advice to inform our advocacy work. Our Member Organisations are registered NDIS providers and deliver a range of supports and services to people living with MS including support coordination, plan management, allied health, accommodation, respite, social support and in-home care. Some Member Organisations also support people living with other neurological conditions including stroke, Parkinson’s disease, Huntington’s disease, acquired brain injury and Motor Neurone disease.

MS Australia Recommendations

NDIS Review: The Australian Government formally respond to all 26 recommendations and 139 supporting actions of the NDIS Review.
National Disability Insurance Agency (NDIA) Staff: Embedding a highly skilled, person- centred, disability aware culture across all disability agencies and governments as per Recommendation 22 of the NDIS Review.
Assessments & Supports: o Disability Representative Organisations be consulted on the new definition of functional capacity prior to commencement to allow sufficient time for implementation, and that comprehensive training be provided to NDIA staff to support consistent and informed decision-making.

o The proposed reform to link supports directly to impairment includes clear guidance on how support needs are to be assessed where comorbidities or secondary conditions interact with a participant’s impairment, a longer

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implementation timeline (1 February 2027) and comprehensive NDIA staff training to support consistent and informed decision-making.

o The proposed reform to permanence and treatment requirements include clear language specifying how staff will determine what other treatments a person should be seeking, comprehensive training for NDIA staff on implementing this change and interpreting and giving appropriate consideration to reports from health professionals and input from Disability Representative Organisations on what treatments people can reasonably be expected to seek outside the NDIS.

o The proposed reform to the reasonable and necessary test not include informal supports and include clear language specifying how published and peer reviewed evidence is to be identified and applied, how expectations of families, carers and informal networks are to be assessed, and what constitutes an unreasonable burden on a carer; comprehensive training for NDIA staff and input from Disability Representative Organisations on the guidance, evidence base and decision-making framework that will be used to assess support needs.

NDIS Plans: o The proposed reform to NDIS Plan Reviews reconsiders the requirement that a significant change be ongoing, Commencement deferred to 1 February 2027, and consultation with Disability Representative Organisations on how ‘significant change’ should be defined and applied in practice, including whether support coordinators should be able to request reassessments on behalf of participants.

o The proposed reform to plans suspensions if uncontactable include comprehensive training for NDIA staff, the development of clear, enforceable guidance on what constitutes reasonable attempts to contact a participant before any suspension action is taken and Commencement deferred to 1 February 2027 to allow time for training, guidance and implementation safeguards to be properly established.

NDIS Pricing: o Transferring NDIS pricing to the Independent Health and Aged Care Pricing Authority (IHACPA) and the release of the IHACPA report on NDIS pricing.

o The power to reduce funding for groups of supports is removed from the NDIS Amendment Bill and no further changes made until comprehensive consultation with participants, providers and the broader disability community.

Provider Registration: Introducing a tiered compulsory NDIS provider registration system as per the recommendations of the NDIS Provider and Worker Registration Taskforce.
Automated Decision Making: Development of clear guidelines on NDIS automated decision making developed in consultation with the disability community and accompanied by comprehensive NDIA staff training.
Human Rights Implications: The Disability Discrimination Commissioner should review the NDIS Amendment Bill to ensure compliance with Australia’s obligations under the United Nations Convention on the Rights of Persons with Disabilities.

NDIS Review

The Explanatory Memorandum for the NDIS Amendment Bill says, ‘many of the proposed amendments respond to, or have been informed by, recommendations of the NDIS Review’ and outlines the one recommendation and four actions it will implement (of the NDIS Reviews 26 recommendations and 139 supporting actions). However, to date the Australian Government has yet to formally respond to the NDIS Review and many of the reforms in the NDIS Amendment Bill

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have not undergone consultation with the disability community. If the Government intends to continue reforming the NDIS in response to the NDIS Review, then a formal response to the Reviews recommendations is needed.

MS Australia recommends the Australian Government formally respond to all 26 recommendations and 139 supporting actions of the NDIS Review.

NDIA

The proposed rapid changes to the NDIS over the coming years will require a highly skilled, disability aware National Disability Insurance Agency (NDIA) workforce. MS Australia has previously raised concerns regarding the NDIA workforce including the lack of disability awareness and the understanding of how to communicate with and support people with disability; consent, decision making and choice and facilitating person-centred planning.

In early 2026 MS Australia conducted an NDIS community survey across the MS and broader neurological community. The findings of this survey were released in the What We Heard: MS, the NDIS & Lived Experience Report1 on 22 May 2026. Overwhelmingly the survey responses pointed to ongoing systemic issues within the NDIS, including persistent gaps in understanding neurological conditions such as MS and what people need to live well. Many respondents described plans and supports that do not reflect the complexity, progression, or day‑to‑day impacts of MS. Many respondents said the NDIS does not adequately understand MS and called for MS-specific training, clearer and faster processes and more flexible, individualised supports.

“The NDIS doesn’t seem to understand that MS is a progressive condition as well as being incurable. They seem to think that I will require fewer support as time goes on rather than more.”

Survey respondent

“Sometimes it seems that the people making decisions about people’s care of their neurological conditions do not actually understand the conditions themselves. I feel like this is a downfall of the NDIS system, as people making the decisions should understand what is going on.”

Survey respondent

Responses to the MS Australia What We Heard: MS, the NDIS and Lived Experience

The concerns outlined in our What We Heard: MS, the NDIS and Lived Experience report are particularly significant given proposed changes to assessment, supports and planning in the NDIS Amendment Bill. In our recommendations below, we have outlined areas where we believe comprehensive staff training and supports are needed, however overall, there needs to be an improvement disability awareness and understanding of staff across government agencies as per the recommendations of the NDIS Review:

Recommendation 22: Embed a highly skilled, person-centred, disability aware culture across all disability agencies and governments.2

MS Australia recommends embedding a highly skilled, person-centred, disability aware culture across all disability agencies and governments as per Recommendation 22 of the NDIS Review.

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Assessments & Support

Functional Capacity

MS Australia welcomes the proposed amended definition of functional capacity in the NDIS Amendment Bill, as it provides greater clarity and shifts assessment toward underlying impairment rather than diagnosis alone. This should support more consistent decision-making, provided it is applied with appropriate guidance and recognition of the real-world impact of MS and other neurological conditions.

For people living with MS, this should provide clearer guidance on eligibility and help ensure supports better align with functional capacity. However, MS Australia is concerned about whether NDIA staff will be adequately equipped to apply the definition consistently and to understand the complexities and nuances of MS in practice.

Feedback from MS Australia’s LEEP highlights that the NDIS often does not understand the nature of MS. MS is a complex neurological condition that is unpredictable, progressive and different for every person. Symptoms can fluctuate from day to day, needs can shift suddenly and the condition can change significantly over a lifetime. For this reason, MS cannot be managed through blanket rules, standard assumptions, or one‑size‑fits‑all assessment, planning and funding decisions.

The NDIS must also recognise the profound ways MS affects daily life – many of which are invisible. Fatigue, pain, cognitive change, and spasticity may not be outwardly apparent but can be deeply disabling. Flexible and responsive supports are critical to maintaining function, independence, and quality of life. Planning decisions must be informed by the lived experience of people with MS, rather than by generalisations about the condition or assumptions about what someone “should” need. When the NDIS understands MS and other neurological conditions properly, supports can finally align with the real lives, needs and challenges faced every day by the MS community.

Ongoing therapies are essential for people with MS, not to “improve” disability but to maintain mobility, strength, safety and independence over time. Therapy supports are available for a reason and while some support therapies may be similar each play distinct and complementary roles in MS management, yet they are often incorrectly treated as interchangeable. When these therapies are reduced or removed, people can deteriorate quickly, resulting in increased support needs and greater long‑term cost to the NDIS.

NDIS Participant Quote from our LEEP Member Rachel:

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. But this comes at repeated cost to the NDIS, simply because I feel I need to stay ahead of constant changes and a scheme that increasingly feels combative. It often feels like I am being asked to repeatedly prove that my chronic, progressive, incurable disability still exists – and trust me, if I found a cure, I’d be telling everyone.”

Above all, people with MS emphasise the importance of valuing lived experience. Participants should be recognised as experts in their own condition, and planning decisions should reflect their individual symptoms, progression and daily challenges. More NDIA staff with specialised knowledge – or dedicated teams with expertise in neurological conditions – would help ensure more consistent, accurate and appropriate outcomes.

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MS Australia recommends that Disability Representative Organisations be consulted on the new definition of functional capacity prior to commencement to allow sufficient time for implementation, and that comprehensive training be provided to NDIA staff to support consistent and informed decision-making.

Supports must link directly to impairment

Under the current NDIS Act, court rulings established that only a ‘causal or contributory connection’ was needed between a support need and an eligible impairment. The proposed amendment would make the link between a person’s impairment and their supports much stricter. Instead of supports only needing a contributing factor, the eligible impairment would need to be the direct and immediate cause of the support need, meaning needs arising from secondary non-eligible conditions may be excluded.

NDIS Participant Quote from our LEEP Member Carol:

“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.”

People with MS are living with a lifelong, complex neurological disease. For people living with MS and other neurological conditions, this proposed amendment to supports being linked directly to their impairment may narrow their access to supports, particularly where comorbidities or secondary conditions are involved. There is no language in the proposed amendment that accounts for how comorbidities may interact with a participant’s impairment and effect their support needs. The proposed amendment needs to recognise that chronic health conditions can be nuanced and are not always neatly separable from disability-related support needs. For example, people living with MS are often encouraged to actively manage comorbid conditions such as cardiovascular disease, diabetes and depression because these can influence MS outcomes. Research also suggests that carrying extra weight may be linked to other health conditions common in MS and may contribute to a pro-inflammatory state associated with neurological inflammation.3 In some cases, these other health conditions may be a contributory cause of disability or may contribute to the progression or worsening of disability. Plan supports will therefore need to properly account for those needs.

The proposed seven -day commencement period after assent is also too short, creating concern that participants and NDIA staff will not have enough time to understand and apply the change properly.

MS Australia recommends that the NDIS Amendment Bill include:

Clear guidance on how support needs are to be assessed where comorbidities or secondary conditions interact with a participant’s impairment, recognising that chronic health conditions are not always neatly separable from disability-related support needs and may, in some cases, contribute to the progression or worsening of disability.
A longer implementation timeline, with 1 February 2027 suggested to align with other parts of the bill.
Comprehensive NDIA staff training to support consistent and informed decision-making. Permanence and treatment requirements

MS Australia is concerned about the proposed amendment to permanence and treatment requirements in the NDIS Amendment Bill, which would introduce a much narrower and more prescriptive test than under the current NDIS Act. While the current NDIS Act requires an impairment to be permanent or likely to be permanent, the proposed amendment would provide

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that an impairment is not considered permanent unless a person has undertaken all appropriate treatment, defined as treatment that is evidence-based, available in Australia, and reliably expected to improve, reverse or alleviate the impairment.

NDIS Participant Quote from our LEEP Member Janine:

“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.”

Although the proposed amendment includes an exception where treatment cannot be pursued for valid medical reasons and clarifies that ongoing maintenance treatment for degenerative conditions does not disqualify permanence, it does not recognise that disability is not a straight trajectory for everyone, particularly for people living with MS and other neurological conditions.

NDIS Participant Quote from our LEEP Member Deanna:

“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.”

MS Australia remains concerned about how these requirements would operate in practice, especially given the relapsing and remitting nature of MS and the risk that NDIA staff may apply the test rigidly or overlook clinical evidence provided by treating professionals. It is also unclear how NDIA staff would determine what other treatments a person should be seeking, particularly given ongoing concerns that staff do not always give appropriate weight to reports from medical professionals, who are best placed to advise on what is clinically appropriate for people with disability, including people living with MS.

MS Australia recommends that the proposed reform include:

Clear language specifying how staff will determine what other treatments a person should be seeking.
Comprehensive training for NDIA staff on implementing this change and interpreting and giving appropriate consideration to reports from health professionals.
Input from Disability Representative Organisations on what treatments people can reasonably be expected to seek outside the NDIS.

Reasonable and necessary test

MS Australia is concerned about the proposed amendment to the reasonable and necessary test in the NDIS Amendment Bill, which would introduce a much narrower criteria than under the current NDIS Act. While the current NDIS Act sets out broad principles and leaves significant interpretation to practice and case law, the proposed amendment would embed stricter criteria in legislation, including a presumption in favour of leasing rather than purchasing where circumstances may change, a requirement that informal supports be maintained rather than replaced, greater reliance on published evidence, and an explicit financial sustainability consideration.

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For people living with MS and other neurological conditions, this would tighten access to supports on multiple fronts. Support from families and carers may be expected to continue unless it is considered unsustainable, equipment may be leased rather than purchased and supports may be refused where there is limited published evidence.

NDIS Participant Quote from LEEP Member Jess:

“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.”

MS Australia is particularly concerned that treating informal supports as a predetermined expectation risks placing inappropriate pressure on families and friends who may have limited capacity to provide care. Formal supports must be funded on the basis of need, not on assumptions about unpaid care.

LEEP members with NDIS plans consistently report that reliance on unpaid care leads to carer burnout, undermines wellbeing, reduces workforce participation, and is neither sustainable nor equitable. The NDIA should recognise that carers, including family and friends, often juggle paid work, children, ageing parents, and health needs of their own. If the reasonable and necessary test is required to refer to informal supports, those supports should only ever be acknowledged as an optional contribution. They must not be treated as guaranteed, used to fill gaps in formal supports, or relied upon to justify reduced plan budgets.

Informal supports should not influence decisions about funding periods or reductions in funded supports such as transport, shared tasks, or personal care. LEEP members have shared that their plan supports have been reduced simply because they had a partner or family member who could “help”, even where this creates additional economic and emotional strain. Participants and their service providers, not family members, are best placed to advise on appropriate support needs. Any consideration of informal supports must recognise capacity limits, sustainability, and the long-term toll on carers and relationships.

The proposed reform also provides no clarity about how NDIA staff would determine what published and peer reviewed evidence should be relied on, whether staff would have the skills and clinical understanding to interpret that evidence consistently and appropriately in individual cases, or how decision-makers would assess what it is reasonable to expect families, carers and informal networks to provide. This creates a real risk that the burden of care will be shifted onto carers and other service systems without proper recognition of what constitutes an unreasonable burden, including the broader economic and social contribution carers make when they are able to remain engaged in work and the community.

NDIS Participant Quote from LEEP Member Julie:

“Informal supports are really important and valued by participants, however these are not always available. Carers often burn out, have jobs, family and other commitments. The NDIS should recognise that not every participant has the same level of informal support, and also ensure supports are available to assist the informal support person and their sustainability to continue to provide informal support into the future.”

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MS Australia believes that informal supports should be removed from the reasonable and necessary test altogether. Informal supports cannot be assumed, treated as guaranteed for participants, or used to justify reduced plan budgets, and must not replace professional supports or drive budget decisions. Without this clarity, the amendment risks being applied inconsistently and shifting additional responsibility onto carers and other service systems.

MS Australia recommends that the proposed reform include:

Removing informal supports from the reasonable and necessary test.
Clear language specifying how published and peer reviewed evidence is to be identified and applied, how expectations of families, carers and informal networks are to be assessed, and what constitutes an unreasonable burden on a carer.
Comprehensive training for NDIA staff.
Input from Disability Representative Organisations on the guidance, evidence base and decision-making framework that will be used to assess support needs.

NDIS Plans

Plan reassessments

MS Australia is concerned about the proposed reform to plan reassessments in the NDIS Amendment Bill, which would significantly restrict who can request a reassessment, narrow the circumstances in which reassessments may occur, and extend the NDIA decision-making timeframe from 21 days to 90 days. While the current NDIS Act allows participants and providers to request reassessment at any time, the proposed reform would limit requests to the participant, nominee or child’s representative, exclude providers, and require the NDIA to be satisfied that there has been a significant change in support needs before a reassessment proceeds.

A participant should never be reduced to a collection of test scores or diagnostic outputs. These tools should be used to understand how best to support individuals, not as mechanisms to exclude them from support.

NDIS Participant Quote from our LEEP Member Anne:

“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.”

For people living with MS and other neurological conditions, reassessments are often critical because support needs can change over time and may fluctuate significantly. The proposed reform would create a higher threshold for accessing reassessments while also extending decision-making timeframes, which may delay necessary increases in support. The language in the NDIS Amendment Bill may also disadvantage participants who rely on a support coordinator to engage with the NDIA, including people who have cognitive issues, communication barriers or who are too unwell, distressed or overwhelmed to manage the process themselves.

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MS Australia is also concerned that NDIA staff do not always give appropriate weight to reports from treating health professionals, despite those reports being central to demonstrating changed support needs.

NDIS Participant Quote from a LEEP Member:

“I have had to regularly spend over $1,200 to prove to the NDIS why I need occupational therapy supports in my plan. Every time a planner changes or delays the process, I’m expected to pay for new assessments just to explain the same needs all over again.”

Further, the requirement to show that a significant change is ongoing may be particularly difficult to apply fairly for people living with MS, given the variable and fluctuating nature of the condition. This is a short-sighted approach that fails to recognise that timely increases in support, even for a limited period, may reduce a participant’s level of disability and lower overall scheme costs over time.

MS Australia remains seriously concerned that the requirement that a significant change be ongoing will restrict timely access to reassessments and lead to poorer outcomes for people living with MS.

MS Australia recommends that the proposed reform include:

Reconsidering the requirement that a significant change be ongoing.
Commencement deferred to 1 February 2027.
Consultation with Disability Representative Organisations on how ‘significant change’ should be defined and applied in practice, including whether support coordinators should be able to request reassessments on behalf of participants.

Automatic Plan renewal

MS Australia is supportive of the NDIS Amendment Bill introducing automatic plan renewal. Under the current NDIS Act, plans must be reassessed or administratively continued at the reassessment date, and unspent funds are often carried forward. Under the proposed reform, plans would instead automatically renew for 12 months at the end of the plan period, with core supports replicated, one off capital funding removed, and unspent funds no longer carried over. The decision would also not be reviewable.

For people living with MS and other neurological, this proposed reform would largely formalise what is already occurring in practice for many participants, with plans rolling over automatically. However, it would also mean that one-off funding must be sought again in a future plan and that unspent funds could not be rolled over. Where a person’s needs increase, they may need to seek an unscheduled reassessment under stricter criteria, which could create difficulties for people with a fluctuating condition such as MS. MS Australia notes that the proposed commencement date is 1 February 2027 and supports this proposed reform because it would provide greater consistency and clearer dates for participants while preserving continuity of core supports.

MS Australia supports the proposed reform to automatic plan renewal and the revised commencement date of 1 February 2027. This change would provide participants with greater certainty, clearer planning dates and continuity of core supports. However, it will be important to ensure participants are clearly informed that one-off capital funding will need to be re-applied for and that unspent funds will not carry forward into a renewed plan.

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Plans suspended if uncontactable

In relation to the proposed reform in the NDIS Amendment Bill on plans being suspended if uncontactable, MS Australia acknowledges the intent of allowing plans to be suspended where a participant cannot be contacted but has significant concerns about how this power may operate in practice. Under the current NDIS Act, a plan may be suspended for absence from Australia or failure to claim compensation, but there is no power to suspend a plan because a participant cannot be contacted. The proposed reform would make staying in contact with the NDIA a formal requirement and would expand the circumstances in which suspension could occur.

For people living with MS, this change raises particular concerns for those experiencing cognitive changes, hospitalisation, fatigue, or periods of reduced capacity that may affect their ability to respond promptly to contact from the NDIA. Although the proposed framework refers to reasonable attempts to make contact, including written notice, there is concern that these safeguards may not be applied consistently in practice. MS Australia has heard reports of significant plan changes following a single missed contact, such as a missed phone call, as well as instances where participants have received incorrect correspondence intended for another person. These experiences raise serious concerns about whether the right person will always be contacted and whether suspension powers could be used unfairly or prematurely.

While MS Australia understands the principle of having a process where there is genuinely no contact, stronger safeguards are needed to protect participants who are vulnerable, unwell, or affected by administrative error.

MS Australia recommends that the proposed reform include:

Comprehensive training for NDIA staff.
The development of clear, enforceable guidance on what constitutes reasonable attempts to contact a participant before any suspension action is taken.
Commencement deferred to 1 February 2027 to allow time for training, guidance and implementation safeguards to be properly established.

NDIS Pricing

MS Australia has serious concerns regarding the new NDIS Pricing changes outlined in the NDIS Amendment Bill. MS Australia has long been calling for improved NDIS pricing arrangements including greater transparency and better evidence-based independent pricing through our The Price is Not Right campaign.

Current NDIS pricing is not consistent, does not align with the true costs of delivering services, is not indexed annually and is not evidence-based. Many prices have been frozen or reduced over consecutive NDIS Pricing Reviews and disproportionately disadvantages rural, regional and remote populations. Pricing does not adequately address the costs associated with staffing, travel, after hours care, group supports, and the significant administrative burden associated with meeting the NDIS administrative and quality requirements. We do not believe that the reforms laid out in the Bill will address these issues.

Decision making on NDIS pricing

The NDIS Amendment Bill transfers responsibility for decision making on NDIS pricing to the Minister, with the NDIA retaining an advisory role. There is no information provided on how the Minister will determine pricing and how transferring responsibility to the Minister improved pricing decisions and increase transparency.

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MS Australia strongly supports transferring NDIS pricing from the NDIA to the Independent Health and Aged Care Pricing Authority (IHACPA) as they have expertise in providing independent advice to government on pricing and this would ensure a coordinated approach to setting prices across the care and support sector. In 2024, the Australian Government requested that the IHACPA undertake initial work to identify opportunities for future reforms to the NDIS. IHACPA have now provided a report to the Government, however, this report has not been made public. Before any transfer of pricing responsibility to the Minister, this report should be released.

MS Australia does support the introduction of differential pricing for certain situations including remoteness, support intensity, in person vs remotely delivered services and provider registration. The IHACPA is best placed to determine a differential pricing model.

MS Australia recommends transferring NDIS pricing to the Independent Health and Aged Care Pricing Authority (IHACPA) and the release of the IHACPA report on NDIS pricing.

Reduced funding for groups of supports

The NDIS Amendment Bill allows for the Minister to make support determinations to reduce funding for a specified groups of supports by a set percentage. The Minister may only make a support determination for the purposes of ensuring the financial sustainability of the Scheme.

The power to reduce funding for supports will have a significant impact on participants who may experience a significant reduction in the level of supports they can access without any consideration of their individual needs and no avenue for review. This may lead to increased levels of disability, hospitalisation, early entry to residential aged care or supported disability accommodation and reliance on the acute and primary health systems. The removal of supports can also reduce participant’s ability to remain employed, increase social isolation and impact mental health and wellbeing. It can also increase carer burden and burnout and reduce workforce participation by carers. The decision to allow the Minister this power comprehensively ignores the needs of people living with disability and instead focuses on overarching NDIS financial considerations. It also does not consider the financial impact that reducing supports will have on other systems including health and hospitals, mental health and income support.

This new power will also make it difficult for NDIS providers to make long term plans and stay viable as at any time the Minister could make a determination that significantly impacts their clients. The current financial viability of high-quality condition/disease specific NDIS providers is already at risk. Our Member Organisations are currently delivering many services at a significant financial loss and providing many unfunded hours of support, especially support coordination and plan management to NDIS participants. The continued lack of evidence-based pricing and the proposed new powers in the NDIS Amendment Bill will further exacerbate the issues providers are facing. Specialist condition-based providers play an important role in delivering expertise, continuity and tailored support for complex neurological cohorts, particularly in regional and thin markets where provider sustainability is already becoming increasingly challenged. If these providers are lost from the NDIS system, it will have a significant impact on participants with complex neurological conditions.

MS Australia recommends that the power to reduce funding for groups of supports is removed from the NDIS Amendment Bill and no further changes made until comprehensive consultation with participants, providers and the broader disability community.

Fraud Measures

MS Australia is supportive of any measure to prevent and reduce fraud, including refining the definition of an NDIS provider, expanding NDIS provider registration, NDIA enforcement powers, mandatory record retention and quicker lodging of claims.

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NDIS Provider Registration

As outlined in our submission to the NDIS Provider and Worker Registration Taskforce, MS Australia supports the introduction of compulsory registration for NDIS providers. The introduction of compulsory registration provides safeguards for NDIS participants, minimises actual and potential harm and mitigates fraud.

The NDIS Amendment Bill proposes expanding mandatory registration to providers delivering supports to ‘participants who are most at risk of abuse and/or exploitation’. MS Australia believes mandatory registration should be more expansive and we support the introduction of a tiered registration process as outlined by the NDIS Review (Recommendation 17) and supported by advice from the NDIS Provider and Worker Registration Taskforce. This allows for a proportionate approach based on the supports being delivered and the size of each organisation. It provides an opportunity for providers of all levels to be part of the NDIS and provides a degree of accountability to all providers and encourages ethical practices.

MS Australia recommends the introduction of a tiered compulsory NDIS provider registration system as per the recommendations of the NDIS Provider and Worker Registration Taskforce.

Automated Decision Making

MS Australia supports measures to improve NDIA’s administrative practices. However, the introduction of any automated decision making should come with very clear guidelines on what is included and it should never involve decisions relating to NDIS plan assessments, planning and supports.

The Integrated Assessment Tool (IAT) used as part of the Government’s Support at Home program has caused considerable distress for older Australians and their families. IAT decisions are leaving people with less supports when they seek reassessments and there is no clear pathway for review. The Office of the Commonwealth Ombudsman has received complaints about and has commenced an investigation into the tool4.

The introduction of automated decision making into the NDIS should be accompanied by clear guidelines and on when and how it will be used. This should be developed in consultation with the disability community and followed by comprehensive staff training.

MS Australia recommends the development of clear guidelines on NDIS automated decision making developed in consultation with the disability community and accompanied by comprehensive NDIA staff training.

Human Rights Implications

Australia is a signatory state to the United Nations Convention on the Rights of Persons with Disabilities (CRPD)5, which sets obligations to ‘ensure and promote the full realization of all human rights and fundamental freedoms for all persons with disabilities without discrimination of any kind on the basis of disability’.

Many of the reforms outlined in the NDIS Amendment Bill do not align with Australia’s obligations under the CRPD, including an emphasis on funding linked to financial sustainability over individual need and limited consultation of the reforms. These proposed changes will significantly impact the ability of people living with disability to live independently, engage with their community and employment and experience a high standard of health.

14     NDIS Amendment Bill 2026 Submission | MS Australia

Submission 438

MS Australia believe that the NDIS Amendment Bill does not meet the following Articles under the CRPD:

Accessibility: Equal access to the physical environment, transportation, information and communications and to other facilities and services open or provided to the public (Article 9).
Living independently: The ability to live in the community, with choices equal to others, and to facilitate their full inclusion and participation in the community (Article 19).
Personal mobility: Measures to ensure personal mobility with the greatest possible independence for persons with disabilities (Article 20).
Health: Enjoyment of the highest attainable standard of health including access for health and rehabilitation services (Article 25).
Habilitation & Rehabilitation: Support to maintain maximum independence through the comprehensive habilitation and rehabilitation services (Article 26).
Work & Employment: The right to work on an equal basis with others including the right to freely choose work and a work environment that is open, inclusive and accessible to persons with disabilities (Article 27).
Cultural Life, Recreation, Leisure & Sport: the right to participate on an equal basis with other in cultural, recreational, leisure and sporting activities (Article 30).

The NDIS Amendment Bill needs to be reviewed by an independent authority that understands Australia’s obligations under the CRPD, and we believe that the Disability Discrimination Commissioner is the appropriate authority.

MS Australia recommends The Disability Discrimination Commissioner should review the NDIS Amendment Bill to ensure compliance with Australia’s obligations under the United Nations Convention on the Rights of Persons with Disabilities.

Conclusion

In closing, MS Australia urges the Committee to ensure that the NDIS Amendment Bill 2026 strengthens the Scheme without undermining the rights, wellbeing and independence of people living with MS and other disabilities. Reform must be grounded in meaningful consultation and co design with people with disability and Disability Representative Organisations, informed by lived experience, and supported by clear guidance, appropriate safeguards and comprehensive NDIA staff training. A stronger, more person-centred NDIS will only be achieved if reforms are transparent, evidence-based, respectful of Australia’s human rights obligations, and responsive to the real experiences of participants, families and providers. MS Australia calls on the Committee to adopt the recommendations in this submission to help ensure the NDIS remains fair, effective and fit for future generations.

15     NDIS Amendment Bill 2026 Submission | MS Australia

Submission 438

Reference

1 MS Australia. (2026). What We Heard: MS, the NDIS and Lived Experience. MS Community NDIS Survey Report. www.msaustralia.org.au/ndis/#surveyreport

2 Department of the Prime Minister and Cabinet (October 2023). Working together to deliver the NDIS Independent Review into the National Disability Insurance Scheme: Final Report. Retrieved from: https://www.ndisreview.gov.au/resources/reports/working-together-deliver-ndis

3 MS Australia (2025). Living well with MS: Your guide to adapting your lifestyle. Retrieved from: https://www.msaustralia.org.au/wp-content/uploads/mlf-pwms_master.pdf

4 Australian Human Rights Commission (22 April 2026). Commissioners welcome Ombudsman probe of automated aged care assessments. Retrieved from: https://humanrights.gov.au/about-us/media-centre/media releases/older-peoples-rights/commissioners-welcome-ombudsman-probe-of-automated-aged-care assessments

5 United Nations. (2006). Convention on the Rights of Persons with Disabilities. Treaty Series, vol. 2515, 3.

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16     NDIS Amendment Bill 2026 Submission | MS Australia