Opposing NDIS Amendment Bill due to impact on supports for Fibromyalgia, CFS/ME, and MCAS (Participant experience)

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Submission 2680

Submission to the NaƟonal Disability Insurance

Scheme Amendment (Securing the NDIS for Future

GeneraƟons) Bill 2026

Attention: Committee Secretary, Senate Standing Committee on Community Affairs

Submitted by email: community.affairs.sen@aph.gov.au

Date: 27/05/2026

I welcome the opportunity to make a submission to the Senate Standing Committee

on Community Affairs about the National Disability Insurance Scheme Amendment

(Securing the NDIS for Future Generations) Bill 2026.

I am a 57-year-old NDIS participant living in Adelaide, South Australia. I live with

Fibromyalgia, Chronic Fatigue Syndrome (CFS/ME), and MCAS — conditions that

are permanent, progressive, and complex. Despite this, the most recent NDIS

changes removed all Assistive Technology, and therapy supports for these

conditions, leaving only my supports for Major Depressive Disorder and Anxiety as

they were considered my primary condition for acceptance onto the scheme.

These conditions have substantially and permanently reduced my functional capacity

across multiple domains. I am deeply afraid to request reassessment to have my

physical disability recognised again, because the likelihood of further cuts is high. I

cannot afford the financial and emotional strain of fighting for essential supports that

I rely on to live safely and independently.

I want to outline the harm this Amendment Bill will cause if it passes Parliament. This

Bill is too far-reaching to pass as it stands. I believe the Bill requires further scrutiny

and amendment before it proceeds.

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Submission 2680

Parliamentary ScruƟny and Transparency

The consultation period for the Amendment Bill is two weeks, which is insufficient to

allow for appropriate consultation, considering accessibility and communication

needs. The Australian Government Guide to Policy Impact Analysis says consultation

should occur for a minimum of 30 days where possible.

I am adamantly opposed to the NDIS Amendment Bill 2026. My position is informed

by my lived experience, extensive medical evidence, and repeated administrative

failures by the NDIA that have caused me significant harm. This Bill would restrict

access, reduce supports, and strip disabled people of choice and control. If passed

in its current form, it will directly endanger people like me and many thousands of

others across Australia.

The consultation period has also been unacceptably short. For people with

fatigue-related disabilities, preparing a detailed submission requires far more time

than has been provided. The rushed timeline excludes the very people whose lives

will be most affected, making genuine participation impossible. My support worker

has been instrumental in assisting me to produce this as an administrative task I

could never do alone.

Recommendation: Amend the consultation period for a best practice minimum of 30

days.

Key decisions leŌ to ministerial instruments, not law

The issue: The Bill allows Ministers to change who gets NDIS support (Schedule 1

Parts 8 and 9) and how much funding people receive (Schedule 1 Part 4; Schedule

  1. by signing an instrument, without going back to Parliament. The rules that will determine critical eligibility thresholds (Schedule 1 Parts 1, 8 and 9) have not yet

been written.

How this affects participants: The decisions that shape the lives of participants,

whether they qualify for the NDIS and what supports they can access, could be

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Submission 2680

changed without parliamentary debate or public scrutiny. Participants may not know

supports or eligibility rules have changed until their plan is affected.

Government agencies are expected to follow proper processes when making

changes that affect the people who rely on them. Why should the NDIS be any

different? My needs cannot be decided by blanket rules — I differ from the next

participant, even if our plans look similar. My conditions significantly limit my

functional capacity and place a heavy mental strain on me every day.

I understand the need for responsible spending, but it feels like the burden is being

placed on participants instead of addressing the lack of oversight on providers. And

what happens when a new government takes over? Without proper consultation

now, future governments could make further cuts without considering the people

whose lives depend on this support.

We deserve to be seen as more than a cost line. Our lives matter, and we deserve a

voice in decisions that shape our future. How many disabled Australians need to

suffer or die before it is recognised that the NDIS is not a financial burden — it is a

lifeline that allows people to live with dignity and a chance at a better quality of life.

Recommendation: Require that all decisions affecting NDIS eligibility and funding

levels be made through primary legislation subject to full parliamentary scrutiny, with

mandatory advance notice to affected participants before any changes take effect.

ExisƟng parƟcipants face narrower criteria and fewer rights to challenge decisions

The issue: The Bill changes the rules for existing NDIS participants and makes it

harder to challenge some decisions about supports and funding. It also restricts

when you can request a reassessment, removes review rights for automatic plan

renewals, and makes funding reductions unreviewable (Schedule 1 Parts 1 and 8).

Combined with restrictions on reassessment requests (Part 2), automatic plan

renewals without review rights (Part 5), and unreviewable funding reductions (Part

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Submission 2680

4), existing participants face narrower criteria with significantly fewer avenues to

challenge decisions about their supports.

How this affects participants: This does not protect participants already on the

NDIS, who could be reassessed under stricter rules. If someone’s funding is reduced

or their plan renewed automatically, they may have limited or no ability to challenge

that decision. This could make it harder for people to get extra support when their

circumstances or disability change.

The recent NDIS changes led to my plan being restricted from whole person to the

primary psychosocial condition even though a detailed application had been made

for my physical needs to be included.

I live with multiple conditions that affect both my physical and mental health. I am

already distressed about asking for the assisted technology for mobility items and

physio funding to be reinstated.

I do not have the means to appeal or go through the escalation process without it

worsening the conditions I manage daily. The stress alone would intensify the

symptoms I already deal with.

Recommendation: Require a “no harm” safeguard ensuring no current participant

loses access to supports unless equivalent supports are in place, with independent

review rights before any exit decision and access to unscheduled reassessments

preserved.

Unreviewable ministerial power to cut funding across all support categories

The Minister can reduce funding for any support or group of supports by a specified

percentage through an instrument that cannot be challenged (Schedule 1 Part 4).

This applies across all budget categories. Unspent funds will no longer carry over at

plan renewal (Schedule 1 Part 5).

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Submission 2680

How this affects participants: A participant’s community participation, capacity

building or assistive technology funding could be cut without warning and without any

right to appeal. Participants who save unspent funds across plan periods for high

cost items will lose that ability entirely.

Before I was finally accepted on to the NDIS, my life was at its lowest point. I had no

support, my mental health deteriorated, and even basic self-care became

overwhelming. Everything required effort I simply did not have, and without

assistance I could not manage everyday tasks, including personal hygiene. For

example, it could be up to two months before I could shower.

The thought of my funding being reduced/removed without warning terrifies me. I

would have to cut my support worker’s hours and go without essential services. My

needs have increased over the years as my conditions have worsened, and I cannot

imagine leaving the house without my support worker. My community access funding

also allows me to volunteer with a charity that gives me purpose. Losing that support

would mean losing a core part of my life.

Without the right to appeal, I fear what will happen if vital supports are removed. The

Minister should not have the power to make these decisions without consultation. I

am not a number or a cost — I am a person, and I deserve to be heard.

Recommendation: Not allow the Minister to reduce funding for any support or group

of supports by a specified percentage through an instrument that cannot be

challenged.

Requirement to exhaust treatment opƟons before eligibility

The issue: A person with disability will need to exhaust treatment options before they

can be eligible for the Scheme (Schedule 1 Part 8). There will also be a removal of

whole-of-person assessment, replaced by single eligible impairment consideration

(Schedule 1 Part 3). The note that previously acknowledged environmental factors

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Submission 2680

and other ineligible impairments could affect support needs will be removed

(Schedule 1 Part 3).

How this affects participants: People with disability will need to prove their

impairment cannot be treated before they access the NDIS. Once in the scheme,

their supports will only be assessed against a single eligible impairment rather than

their whole experience. A person’s individual circumstances will not be considered,

including ability to pay for treatment, where they live or whether treatment is actually

available to them.

For me, I only qualified under a psychosocial disability, and the other disabilities were

to be supported as a whole person using my goals.

These conditions have profoundly damaged my quality of life. I have not been able to

work for years. While certain treatments might help me cope with tasks with support,

nothing will ever “fix” my conditions. My disabilities are permanent and will

deteriorate — that is my reality.

So, if the NDIS expects me to exhaust every possible treatment before they continue

my funding, I have to ask: at what cost?!

What would it cost my mental health?!

What would it cost my life?!

I live on a disability pension. I cannot afford expensive treatments that Medicare will

not cover. So, after I drain every cent I have, what will the NDIA decide is “enough”?

Would I be expected to try treatments that are unsafe or not recommended by world

health authorities — just to prove I am still disabled?

On top of everything else, my specialists have warned me not to pursue certain

treatments because they are highly likely to make my functional capacity worse. I am

doing everything I can to continue finding affordable, sustainable options that might

help me manage daily life, but as my conditions worsen, even those treatments lose

their effectiveness.

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Submission 2680

It should not be up to the NDIA to decide what a “reasonable” treatment pathway

looks like for me. The only opinions that should matter are those of the GP and

specialists who actually understand my conditions, my history, and the risks involved.

They know what is safe for me — the NDIA does not.

Recommendation: Do not proceed with a requirement to exhaust “appropriate

treatment” options – there are no safeguarding measures around participant harm

due to side effects or complications, a participant’s financial ability to pay, or their

geographic capacity to access treatments.

Unvalidated funcƟonal capacity assessment tool risks misidenƟfying need

The issue: The Bill shifts assessment from whole-of-person consideration to a single

eligible impairment (Schedule 1 Part 3). Read together with the eligibility thresholds

in Parts 8 and 9, the tool used to conduct functional capacity assessments must be

capable of sufficiently identifying whether a person meets the threshold for that

single impairment.

The named assessment tool is the Instrument for Classification and Assessment of

Support Needs (I-CAN). I-CAN requires validation to ensure it will sufficiently identify

the needs of all people with disability, including those whose needs may be

fluctuating or episodic and may not be captured through a point-in-time assessment,

and to ensure it is culturally appropriate for First Peoples with disability.

How this affects participants: If the assessment tool does not accurately capture

the full extent of a person’s disability, including needs that fluctuate or vary over time,

a participant may be found ineligible or have their supports undercounted, with no

guarantee the result reflects their actual experience.

I would compare this assessment tool to the one previously used in aged care — a

system where the questions were so mismatched to people’s actual lives that those

who desperately needed help were underfunded, while others who appeared

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Submission 2680

able-bodied ended up with far more support than they required. It was inconsistent,

unfair, and blind to individual reality.

If the NDIS adopts a similar approach, the questions must cover every relevant area

of disability to the participant and be weighted according to each person’s

circumstances and conditions. There should be multiple shorter options for people

with cognitive difficulties — that are combined to create a full, accurate picture of the

person as a whole including in home options with support chosen by the participant

for people with stamina issues.

A functional capacity report is meant to capture a person’s limitations in their entirety.

How can the NDIS claim to assess people this way, then turn around and say they

will only consider a single condition while ignoring everything else? It makes no

sense. The Minister has said the focus will be on functional capacity, not diagnosis

— yet the system still dismisses conditions that are not “coverable” under the NDIS,

even when they directly affect that capacity.

I depend on mobility equipment to move safely both inside my home and in the

community. I can stand for barely a minute before pain and fatigue overwhelm me,

and I can walk only about twenty metres before becoming completely exhausted. I

spend 16 to 18 hours a day in bed. A single medical appointment wipes out my entire

day. These are not fluctuations or rare flare-ups — this is my everyday life.

I have already lived through the consequences of losing essential supports. When

my mobility needs were defunded, I was forced to overexert myself without the

assistive technology I was meant to receive, such as ramps and a mechanical bed.

Losing physiotherapy has further reduced my functional capacity and led to several

falls.

You cannot slice a person into pieces and fund them based on only one part of their

disability. My conditions are interconnected; they cannot be separated. My funding

must reflect my overall disability, not a narrow fragment of it. If I undergo a Functional

Capacity Assessment, it will be based on me as a whole person — my physical

conditions included, not just my mental health.

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Submission 2680

Recommendation: Do not proceed with I-CAN as the functional capacity

assessment tool unless it has been demonstrably validated to identify the needs of

all people with disability, including those with episodic or fluctuating disability, and

demonstrated to be culturally appropriate for First Peoples with disability.

Supports cut and replacement system added

The issue: From 1 October 2026, the government has announced funding for social,

civic and community participation supports will be cut by 50 per cent and capacity

building daily activities by 10 per cent for all participants, reductions that will be

implemented through the ministerial instrument power in Schedule 1 Part 4.

How this affects participants: Supports that help participants connect with their

community, build skills and maintain independence may be cut with no additional

support. These supports are often what help people stay visible, connected and safe.

I volunteer for a not-for-profit charity that means everything to me. My NDIS plan

even includes goals that support this — helping animals in need and having a

support worker with me whenever I am involved in charity work outside my home. A

portion of my community access funding goes directly toward this, allowing me to

attend events and contribute in a meaningful way. This work gives me purpose. It

allows me to offer what I can to those who need it.

The Bill’s proposal to allow the Minister to cut Social and Community Participation

funding by up to 50 per cent is deeply alarming. My community access supports are

not optional — they enable me to attend medical and therapy appointments that

maintain what functional capacity I have left. The stress of this uncertainty has

already worsened my mental health, disrupted my sleep, and triggered severe

nightmares and fibromyalgia flare-ups.

Social and community participation is integral to my health. A 50 per cent cut would

prevent me from attending the activities that give me purpose and help me get out of

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Submission 2680

bed on difficult days. Removing them would accelerate isolation, mental health

decline, and physical deterioration — exactly what my clinical team works to prevent.

I also strongly oppose replacing individual supports with group programs. My

sensory sensitivities and unpredictable symptoms make fixed schedules unworkable.

On bad days I cannot leave the house; on better days I may only manage one or two

hours before needing to rest. Individual, flexible support with someone who

understands my needs is the only model that keeps me safe and engaged.

The prospect of further cuts at ministerial discretion is itself a major source of

anxiety. Not knowing whether my supports will remain in place directly affects my

mental health and my ability to plan my life. The NDIS is meant to provide stability

and dignity — a system where supports can be reduced at any time does neither.

Without this funding — and without the core supports I rely on — I worry deeply

about what will happen to my ability to contribute to the community. If I cannot

volunteer, what purpose do I have left. How do I stop my mental health from

spiralling when the only social connection I have is taken away. I do not have a

supportive family network, and over the years my circle of friends has grown smaller

because my conditions make it hard to maintain relationships.

The community access I have now is what keeps me connected. It lets me be part of

something bigger than myself. It lets me feel needed.

Recommendation: Require that no reductions to community participation or

capacity building supports take effect until Foundational Supports are fully

operational, adequately funded and demonstrably able to meet the needs of those

who will lose NDIS supports.

AddiƟonal concerns

  1. CHOICE AND CONTROL Choice and control are not abstract principles. For me, they are the difference

between receiving care that works and care that causes harm. I have established

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Submission 2680

relationships with support workers who understand my condition, who know how to

pace activities to avoid post-exertional crashes, and whom I trust. Building those

relationships takes considerable time and effort — time and effort that I cannot afford

to expend repeatedly.

Mandatory registration requirements that restrict my ability to use unregistered

providers, including directly employed support workers, would force me to navigate a

bureaucratic registration system in search of a provider who might or might not be

able to meet my needs. Many smaller, specialist, or flexible providers — the ones

most likely to offer the kind of responsive, individualised support I require — are

unregistered precisely because the registration burden is too high for small

operations. Mandatory registration would reduce the pool of available providers and

reduce the quality of care I can access.

If registration is to become mandatory, a self-directed category of registration must

be included. People with disabilities must retain the right to directly employ and direct

their own support workers. This is not a niche preference — it is essential for anyone

whose support needs are complex, fluctuating, or highly personal.

  1. HOW THE NDIS IS RUN The Bill proposes to expand the NDIA’s powers to search participants’ homes,

require production of information, and issue large fines. Given the NDIA’s

demonstrated record of administrative error and inadequate engagement with

participants, expanding these coercive powers without first addressing the agency’s

culture of poor decision-making is deeply concerning. I have no confidence that

these powers would be exercised with the care and accuracy necessary.

The proposal to allow automated or computer-generated decisions about disability

supports is similarly alarming. My condition is complex, fluctuating, and not easily

captured by standardised assessment tools. The assessments conducted by My

Occupational Therapist were administered by a skilled clinician who could

contextualise my responses, observe my functioning, and apply professional

judgment. An algorithm cannot do this. An algorithm cannot understand how my

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Submission 2680

mental health is affected by my Fibromyalgia and the cognitive fog that affects how I

answer questions about my own capacity. An algorithm cannot weigh the difference

between what I can do and what I can reliably sustain.

The proposal to impose a 90-day claim period is also of direct concern. Cognitive

fatigue is one of my primary symptoms. A 90-day deadline would disadvantage every

participant with a cognitive, fatigue-related, or episodic disability. It is a deadline that

reveals an assumption that participants are able-bodied administrators of their own

care — an assumption that is fundamentally at odds with the purpose of the scheme.

  1. PLAN SUSPENSIONS This is a genuinely concerning area, people stopped answering the calls of the NDIA

due to some underhanded means to “review” a participant’s plan with no warning

and no support during any consultation process. People talk about being blindsided

by NDIA and then getting emails after the call saying we have reviewed your plan

followed by cuts. This act alone has caused distrust among the disability community,

not to mention the lack of understanding and acknowledgement on the NDIA’s side.

When I receive an important phone call, I require my support worker/nominated

support person to be present so they can step in to assist me when my words fail as

my cognition falters and patience wanes. A phone call from the NDIS wanting to

check in, should be about care and genuine concern not a smokescreen for their true

intent, which is to find a way to reduce my support needs. It is these actions that

have been reported by other participants, which has led to calls being left

unanswered when I am alone.

Participants should be given the opportunity to address the NDIA at a time that works

for them with their supports in place. Rather than missed calls, alternative forms of

contact should be used for those with cognitive issues so they may be able to

respond accordingly without the fear of being suspended.

The change to the bill could see the stipulations being placed on participants where

the NDIA claim that they have “tried” to contact you, irrespective of no missed calls

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Submission 2680

or emails to advise of these attempts. I cannot sit on the phone for over an hour

waiting for my call to be answered, so if I am unable to answer 1 call or even return

the call to talk to an NDIA representative, will I be automatically suspended as you

deemed that 1 call sufficient intent to contact.

Is it reasonable to assume that the NDIA would expect all calls from unknown/private

numbers to be answered despite the increase of spam related phone calls? What

processes are the NDIA going to put in place to ensure that all reasonable steps are

taken before pursuing the suspension (or revoking) a participant’s plan??

CONCLUSION

The NDIS changed my life. When I had access to the right supports including

physiotherapy weekly, my condition stabilised. I had capacity for social connection,

for creativity, for the activities that give my life meaning. That is what the NDIS is

supposed to do.

When those additional supports reduced, I declined. If reduced further, I dread to

think of what it will do to my mental and physical health.

The NDIS Amendment Bill 2026, in its current form, will make the system more likely

to fail people like me — not less. It narrows access, reduces supports, removes

choice and control, expands coercive powers, and embeds ministerial discretion in

place of individualised assessment. It does not address the administrative failures

that caused me harm. It does not fix the culture of poor decision-making at the NDIA.

It does not provide the certainty and dignity that disabled Australians deserve.

I urge the Committee to recommend that the Bill not be passed in its current form.

The NDIS must be strengthened — not diminished. Disabled Australians deserve a

scheme that recognises the complexity of their lives, respects their expertise in their

own needs, and holds the NDIA accountable for the decisions it makes. This Bill

does not do that.

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