@@attention Committee Secretary, Senate Standing Committee on Community Affairs.

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

June 1st, 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 an unpaid advocate (currently very unwell – apologies that my response will be a bit of a hot potch and not as good as I would like) for a cohort of people with significant disabilities who do not have safe birth family to assist them to cope with the NDIS red tape and the constant changes that it is always in the process of, generally without informing people directly. For those that don’t know, the NDIS originally refused to believe that alternate family / host care had, prior to the arrival of the NDIS, been a State funded option for adults with very significant disabilities who had ‘aged out’ of out of home care and told me, as though these people were just uncared for rubbish, and that they should all be sent to group homes. There’s a you beaut example of how the NDIS has made many vulnerable people feel horribly stressed and frightened when it should be, and was meant to, do the opposite.

All up I’ve been a carer for people with disabilities for over 45 years – over 60 years if one counts me as a 6 year old child teaching my older cousin to read as I myself learned how to read. (She had been given up as a lost cause due to a brain injury she sustained accidentally as a baby). I’ve worked as a psychiatric nurse, and over the years I’ve worked in the Arts field with Academy Award winners and also gained grants from the Australia Council for the Arts and the NSW Arts Council to create performance work for and with people with disabilities who are usually largely ignored by mainstream Arts culture.

I’m pretty old now and I’ve been around through all sorts of disability systems, including Self-Managed State disability funding for Community Participation which I want to tell you about a bit later in the submission.

I’m sad that the writers of this proposed Bill have shown so little care or concern for these most vulnerable citizens - if there is any care there at all I can’t find it. It seems to be full of contempt, even the timing of the document’s release and the intention to speed its passage into legislation when the writers must know that many people with disability require assistance to read and understand documents like this, if they can comprehend them at all.

Thinking back to a core premise of the NDIS – Choice, Voice, and Control for people with disabilities. Lots of people with disability can’t read – what was done so that they could hear these legislative plans and have a say? They were given an extra weekend to get their submissions in? Do you really think that’s enough to say there was consultation?

I HAVE TO SAY I OPPOSE THE ENTIRETY OF THE BILL.

I believe we’ve been asked to stick to the points raised in the Bill so I’ll try to do that by sort of following a template one of the peak organisations put together to try to help

Key decisions left 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 3) 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 even 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 changed without parliamentary debate or public scrutiny. Participants may not know supports or eligibility rules have changed until their plan is affected.

How contemptuous is that? I don’t have to tell you how important it is not to betray another human being, that betrayal endangers a person’s mental health which in the cohort I advocate for is generally already sadly low. But the betrayal of a person who does not have the capacity to manage life without support, and who has lived their Page 3 of 16

• life without the stability of a loving family caring for them, or any other stability

especially causes damage. Who in the government thinks it’s ok to scare these poor

people like that? Trust me, their lives have been hard enough.

Ignoring the horrific issue of the definite harm being caused (as the government

seems to choose to) by the worry about losing support at the whim of a Minister who

is a stranger to them and their everyday lives and needs, there is a practical issue

that it generally takes a very long time to find and train a support worker to effectively

work with a person with disability, it is an exhausting and often a humiliating process

for a person with disability to have to admit their needs to a stranger to train them to

provide support. What are we supposed to do – just sack them as though we can

replace them with any Tom, Dick or Harriet off the street? You’ve got to be joking if

you think that’s the case, and it’s not a funny joke.

Just the fear of the loss of a trained support worker due to funding being withdrawn

without notice is enough to be devastating, let alone if it really happens. And if it

happens it’ll happen no warning, no countdown, no severance pay.

Many people from the out of home care cohort have severe language

disabilities/delays and intellectual disabilities so can’t easily speak up for themselves.

They NEED those trained staff!

Without family to care for them they are horrendously at risk of being victims of all

sorts of horrors and violence. Fragile, innocent and likely to be targeted according to

all the documentation, or fragile and argumentative and not worldly enough to know

when they’re at risk with strangers. They need support workers who know them well

and who they can trust.

The NDIS propensity for acting without consultation with participant pwd is not

something we would find often in the real world but pwd’s have had to bear this as a

given in the NDIS - the scheme that should be most sensitive to their needs.

Repeatedly treated like this, promised better, they are never going to feel safe.

• without warning, supports can’t be paid. A whole week’s pension doesn’t cover more than a few hours of support. So, a participant fears owing money that they can’t afford to pay back. Support workers and therapists have been encouraged by the NDIS to have service agreements with participant pwd which require payment for sessions cancelled without adequate notice. And the pwd to pay personally if the NDIS WILL NOT PAY as is the situation in this scenario. Without warning. For having done nothing wrong.

What do you reckon that makes any person feel like, especially a pwd on a very limited income? Terrible.

Obviously creates stress related behaviours of concern which cause the pwd to require higher levels of support and/or even to require chemical restraint. Can lead to self or other harming and then the need for hospital care. (This is the recurrent theme for most of the proposed Bill changes).

Please just stop doing this stuff and work out how to show kindness.

Can’t the NDIS live under the same rules as everyone else instead of thinking nothing of springing surprises like this on participants who can barely afford rent, food and meds from their pensions as it is.

Take it from me as an unpaid volunteer carer that the temptation to drop the pwd you’re caring for off at the local hospital becomes more intense the harder the NDIS thoughtlessness sets a participant up to be fearful and anxiety ridden and leads to them having some very nasty meltdowns because they have been left feeling so powerless. Days with / for pwd’s are not like your days, there is so much extra to plan, so many things – tiny things often – that can cause massive breakdowns for participants and threaten everything important in their lives. Frighten them into running away or committing acts of violence or even becoming psychotic. We need the NDIS to chill. Harder, stricter rules don’t help anyone. The NDIS is stuffing this up with their over bureaucratic approach.

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.

And that rules be simplified and red tape be reduced.

Existing participants 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 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.

Why would the NDIS even want this – it’s so unfair. Is it because they so often lost at the AAT (now ART) and they want to pay participant pwd’s back? I can only think it will cause more melt downs and more behaviour support problems to manifest with concurrent issues of the participant then needing to have their liberty curtailed which leads to the need for more behaviour support therapists at great cost and potentially more meltdowns and hospital stays. Who thinks this stuff up?

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. When a participant feels something is wrong, of course they need access to natural justice like any other Australian citizen. Otherwise, what is the point of the

NDIS? It is dehumanising to take away their supports and not to allow them access

to natural justice.

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).

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.

Again, when a participant feels something is wrong, of course they need access to natural justice like any other Australian citizen. Otherwise, what is the point of the NDIS? It is dehumanising to take away their supports and not to allow them access to natural justice.

We always try to keep money in the plan specifically to pay for possible short-term accommodation in case there is urgent need. Also to pay for directly employed support workers who need long service leave and other leave accumulated, to replace disability related materials and items.

The rules are already so strict and strange that we are too frightened to purchase disability related items in case a non-disabled person might find a use for the same thing. It’s awful to be this stressed and worried all the time.

In the NSW ADHC funded Self-Managed Community Participation Program carry over of funds was negotiated with ADHC at the end of the financial year and allowed to be kept if they were genuinely required for disability related expenses. Participants were treated as though they mattered. Funds were distributed every 3 months and could be accumulated all year, or spent as needed. Funds were put into a bank account opened for the purpose, kept Page 7 of 16

• separate from anything else.

We reported spendings with receipts to an

agency – very much like a plan manager - that looked after us and our funds

for 5% of the SMCPP funding. It was so much easier and kinder for everyone.

Recommendation: Require that unspent funds carry over at plan renewal for participants saving for high-cost items or for any other disability related need and that no funds are removed without either the permission of the participant pwd or their nominee or a higher level clerk who has been specifically trained in kindness and empathy.

Requirement to exhaust treatment options 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 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.

This is awful. Be ashamed. The MOST vulnerable Australians will NEVER be able to manage this draconian rule. Their circumstances really matter. Picture yourself unable to function as other people can, and needing to be able to arrange and pay for expensive, expensive, tests that are a) not even available where you live; b) potentially likely to cause you harm if you somehow manage to access the testing to prove that you need support; c) in many cases this cohort have damaged nervous systems from trauma suffered not only because of family of origin but because of systems abuse as they grew up, many do not have the ability to trust or

Unvalidated Functional Capacity Assessment Tool Risks Misidentifying 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.

Many / most of the people in the cohort I’m most concerned for describe feeling the

eed to present their best selves to the person conducting the tests. How

embarrassing or frightening it is for them to describe areas where they simply

OFTEN/ALMOST ALWAYS cannot function, especially not in a normal ongoing way.

The textbooks are full of descriptions of people who could pull themselves together for a special event only to collapse afterwards, in fact I have see that happen myself numerous times, total collapse after the ‘interrogation team’ leave, participant left rocking on the floor, sobbing. It’s horrendous. And a stupid waste of government money when all the documentation to prove the disability issues has been completed by accredited doctors and therapists already. What makes the NDIS think that the system they’re devising will be any more accurate?

The proposed new assessment process is said to be exceedingly long. None of the participants I know well can stand up to extensive ongoing questioning. Their nervous systems can’t stand up to it, they tell me it feels like torture, being interrogated by an enemy force, highly triggering, and they’ll say anything to make it end if they have to. That doesn’t sound like a good idea.

We were PROMISED BIG TIME when the NDIS started that participants with proved permanent ongoing significant functional impairments would not have to keep on being tested and tested like lab rats. I have heard of participants nominees being asked by planners if the Down Syndrome has gone away yet, and even when an amputee’s leg is expected to regrow. I kid you not. Meanwhile, what could be a normalish sort of life for a pwd with support is wasted dreading the next lot of testing that the NDIS demands. Some / many? participants are becoming suicidal. A bit like robodebt.

Imagine what happens to these people if they are then only funded for their best days – support providers don’t want them on their books, independent support workers just walk out, and there will be no ongoing person to smooth the way.

Support coordinators are generally completely unreliable in my experience – if they have been devoted and skilled they have been unable to endure the numbers of times in the current NDIS system where cruel plan funding has been meted out to

Support Coordination Issues

pwd participants who really truly need help and support. The feeling of helplessness when you see a vulnerable person being abandoned isn’t easy to live with and they don’t stick around past their endurance points; they leave and become consultants, or just leave. And so called ‘support coordinators’ fill the gap – you know, the sort who don’t help at all, mostly just charge people to call them about nothing much and send out bills for nothing and fritter away the support coordination funds.

Recommendation: Do not perform unnecessary testing, explain to participants kindly and gently if there is a genuine need to verify a claimed impairment and offer them a range of options to do so. Do not proceed with I-CAN as a 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 before replacement system is ready

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. The Foundational Supports system intended to fill that gap has no confirmed implementation date and is not yet operational.

How this affects participants: Supports that help participants connect with their community, build skills and maintain independence may be cut before anything exists to replace them, leaving carers and families with greater responsibilities and no additional support. These supports are often what help people stay visible, connected and safe.

This is unforgiveable. Participants only have this funding because they have been assessed as requiring it. This is the icing on the cake as proof that the government, despite having created the NDIS, does not have one iota of care or knowledge of the needs of pwd. I have personally worked many many unpaid hours to find appropriate support people and activities to suit the complex needs of the disabled individuals who have no safe birth family to fall back on. It’s so important to get them

out there in the community, meeting people, learning social skills, developing

relationships they have missed out on over the years. I stay up all night sometimes

working and connecting participants with activities that they might manage ok if they

have the best supports with them, linking, linking, linking. I imagine that you

politicians also need the wages that pay for the supports you need. If Australians

must suffer significant loss of the supports that help pwd then don’t you think it would

be respectful if we all lost a similar amount of supports via wage reduction? ’Hey

John, sorry but I can only pay you to mow half the lawn this week, buy half a loaf of

bread, wash half the floor, catch the the train halfway to work, have half your brain (operation completed.’ Seems fair and a lot less disrespectful than making pwd cop the full cost.

Recommendation: Require that no reductions to community participation or

capacity building supports take effect unless Foundational Supports are fully operational, adequately funded and demonstrably able to meet the needs of those who will lose NDIS supports. And that if people must exit the NDIS they are informed respectfully, kindly and gently. Perhaps you need to bring in some skilled psychologists to advise how best to avoiding causing harm to the targeted pwd. But preferably we lose no-one from the NDIS as there is no good reason to do so.

If it is a question of finding funds, then:

• number 1 candidate for finding some funds could be the amount that the NDIS has spent on legal representation heading to courts and tribunals in an attempt to bully disabled people into going without what they need. (One of the changes to legislation prevents appeals to save money despite the fact that in many, many, cases the NDIS has settled out of the tribunals/courts because they knew they were wrong or have lost in tribunal hearings or courts because they were wrong.)
• the number 2 candidate – the NDIS stops making pwd pay exorbitant amounts for occupational therapists to conduct Functional Capacity testing and report writing over and over again at taxpayer expense? And other therapists’ reports too. The NDIS planners often admit that they don’t have time to read all these reports.

• coming up for number 3 – what about we look at ACOSS’s (Australian Council of Social Services) suggestions, look outside the NDIS and consider progressive income and wealth taxation, corporate and wealth levies, natural resource levies, and closing corporate loopholes?

Never forget that People with Disability were promised that they’d be treated with respect by the NDIS, that once they had proved that their disabilities were life long, significant, etc, etc, they would then be able to concentrate on creating lives with purpose, lives that mattered, lives like other people have. Instead, they have been forced over and over and over to endure great long stressful tests that cost taxpayers a fortune and that planners don’t read, just to try to prove that their already proved lifelong disabilities still exist, completely dehumanising and creating so very much anxiety among them. Cruel. Reprehensible, and a mockery of the Australian way.

These paragraphs were posted by a bloke (Bob Done) on Facebook the other day, they fit what’s going wrong with the NDIS – good people paid by the NDIS and indeed the government like you politicians too scared to stand up and point out the injustice:

Most systems of oppression throughout history were not carried out by cartoon villains. They were carried out by ordinary people operating inside institutional structures that rewarded obedience and punished resistance. That is one of the most uncomfortable realities about statism.

The danger is not simply the existence of cruel individuals. The danger is a system that normalizes moral detachment through procedure, hierarchy, and authority. Once people are trained to prioritize compliance over conscience, harmful outcomes no longer require widespread hatred or malice. They only require enough people willing to say, “I’m just doing my job.” History repeatedly demonstrates this pattern. Bureaucracies become machines where responsibility is fragmented so completely that individuals stop questioning the larger consequences of their actions. Each person performs one small role, follows one rule, signs one form, enforces one policy, and tells themselves the system itself is responsible. But systems do not act on their own. They function through human compliance. This is why statism becomes so dangerous over time. Institutional incentives often reward loyalty more than integrity, procedure more than wisdom, and obedience more than independent moral judgment. The result is that harmful policies can continue for years while millions participate without ever seeing themselves as responsible for the damage being done. Freedom requires something harder. It requires individuals willing to think critically, question authority, reject immoral orders, and place conscience above institutional

pressure. Without that, even ordinary people can become participants in extraordinary harm.?.

I’m honestly too tired and too sick to the stomach of what’s going on with the NDIS –it looks to me like the most vulnerable in our community are being intentionally demonised and dehumanised to justify the cruelty of the legislation changes and to encourage the general public to turn off empathy for them. That needs to stop and the whole NDIS needs a rethink. Give us alternatives to the ever increasing bureaucracy.

The constant changing of rules, the closure of long standing good support agencies who can’t cope with all the red tape being forced on them, the heavy handedness, the lack of common sense, the oppositional way that some NDIS staff behave towards clients, the lack of real support or continuity, has driven me beyond the ability to calmly sit and write. I don’t have time left and I don’t have energy left, and your legislation writers are rapidly taking my capacity to hope.

I imagine that this proposed Bill, the horror of more change, even the possibility of it, will cause suicides among the stressed out, anxiety ridden, vilified people it is supposed to be aimed at assisting.

Before the NDIS started, I had time to work on creating and maintaining circles of support for those who have no safe family members. Since it began, I’ve barely had time to keep in touch with those volunteers, we’ve mostly lost touch. It’s awful. You can imagine it isn’t easy to entice people to agree to join voluntary support circles these days when everyone is so busy.

I really do want to tell you a bit more about the Self-Managed Community Participation program which was running in NSW just prior to the NDIS and available to people whose disabilities were so extreme that they were unable to access the other post school option program, Transition To Work, when they left school.

Funds were more limited in amount but were allowed to be almost totally flexibly spent. Just a couple of rules – all expenditure had to be related to the person’s disabilities and the usual not spent on rent, non-disability related furnishings, or groceries to satisfy the ATO rulings that the funds not be able to be considered personal income. Nothing illegal allowed.

People with disabilities had a set budget according to their assessed level of need and they could use that budget flexibly on what was most important to them. Whether that be therapies or support workers or materials to assist them to meet the goals that they chose for themselves. ADHC was over the moon when a young pwd from the aged out of foster care cohort chose to use some of their funding on buying and painting and

restoring a second hand caravan which helped them overcome the fear they felt leaving the house, asked if they could use it as the cover of their staff newsletter to share the joy with their staff. I think you’d be shot for treason if you wanted to do anything like that

there are other programs as well which were having self managed options drawn up - iasp was one - individualised accommodation support program which, from memory, worked a bit like ilo or home based sil. i’ve forgotten the others but nsw was doing some great stuff, as was western australia who were leading the way with host family placement work.

anywho, thanks for letting me rave on. if i still have the guidelines for that nsw smcpp i’ll forward it.

all the best.

please do good with this, ndis matters.

Yes

‘m Disabled.

But here’s what I’m

I’m not I’m not

broken impaired

I’m not I’m not

ninvisible fragile

I’m not I’m not

less worthy difficult

less than

I’m not asking

too much

I’mnota

side note

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Disabled

By Society

I’m not

a burden

I’m not the

problem

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V

I’mnota

checkbox