Dear Committee Secretary,

I am writing because I am deeply concerned about the proposed changes to the National Disability Insurance Scheme (NDIS), including the impact of changes that may remove, reduce, restrict or redirect individualised disability supports.

I am not writing as a policy expert.

I am writing this as a disabled person whose life depends on disability support.

I am autistic and have ADHD, Complex Post-Traumatic Stress Disorder (CPTSD), PTSD, anxiety disorders, ﬁbromyalgia and PCOS. I am also a disability support worker and a registered assistance dog handler.

I know what life looks like with support. It is possible to leave the house, have the strength and energy to get out and do things. Essential things are possible - like having home-cooked meals, . Meaningful things are possible. Like writing music, going for bushwalks, travelling, seeing a band play, making an income. When my disabilities are supported properly - I am able to help people in the community and basically just being a part of what I call “outside life”. And that brings me joy beyond all reason.

I also know what life looks like without support. I still have recurring nightmares about it. I lived that unsupported life for many years. I call that life “inside life”.

Without support, I could never go out much. If I did, I would be met with pain and overload from trying to carry too many groceries home on the bus - that’s if I even made it out of the grocery store - a lot of the times, my assistance dog would alert me to leave and she would guide me to a quiet space outside where I could get her to help perform depth pressure therapy and help me regulate and prevent a shutdown or panic attack.

During “inside life” I was constantly sick with headaches, brain fog and had no energy. My health deteriorated and I had no help to manage or attend all of the medical appointments I was supposed to go to. Without support, my life was nothing but daily struggle, chronic fatigue. There was nobody to help me - and I am terriﬁed beyond all reason of what might happen if I once again ﬁnd myself without support.

The most important thing I need this Committee to understand is this:

Please do not mistake my survival - or anyone else’s survival“ for evidence that support is unnecessary.

I survived homelessness.

I survived abuse.

I survived unsafe housing.

I survived severe mould exposure that affected my physical and cognitive functioning.
I survived periods without adequate support.
I survived because I had no alternative.

Survival is not the same as safety.

It’s not the same as functioning.

Or participation.

Survival is not the same as quality of life.

Many disabled people become extraordinarily good at surviving situations they should never have been placed in.

We create workarounds.

We sacrifice our health.

We lower our expectations.

We tolerate isolation - because many of us do not know any alternative or we may not be able to obtain or maintain social connections.

We accept unsafe situations - because we cannot find an alternative or we don’t have the support in place to identify one.

We endure things that would be considered unacceptable for most people because often we can’t find any other options.

Then people point to our survival as evidence that we did not need support in the first place.

This is backwards.

Survival is not the same as living a meaningful life.

My survival should not be used as evidence that I can survive without support.

It should be used as evidence of what happens when support is absent.

The goal of the NDIS should be to help people live a life that is as close as possible to how it would be if someone were not disabled. We should never have to show how much suffering a person can endure before they break.

The goal should be to prevent preventable suffering in the first place.

Housing Stability

After years of housing instability, homelessness, unsafe environments and constant uncertainty, I finally have a home that meets my disability support needs.

For most people, a home is normal.

For me, it is life-changing.

My disabilities and unmet support needs have previously led me to have no choice but to live in tents through extreme weather.

I have experienced flash flooding, storms, extreme temperatures and dangerous living conditions.

I have lived in environments that harmed my health.

At one point I was forced to live primarily in a bathroom because it was the least mould-affected area available to me in a severely mould-contaminated property.

The mould affected my ability to think, communicate, remember information, make decisions and function day-to-day.

I became so cognitively impaired that I had to leave myself recordings, written instructions, photographs and reminders simply to remember what I was doing.

These were not proper supports.

They were emergency survival measures.

They did not make my situation safe, sustainable or reasonable.

They were evidence that I was surviving without the support I needed, not evidence that I was managing.

Today I finally have a home that allows me to recover.

Every Australian deserves a place to call home.

For me, finding housing as been a permanent challenge, barriers created directly by my disabilities.

My house is not a luxury.

It is not a reward.

It is infrastructure, where healing happens.

It is where I have finally been able to experience some stability.

Home is not earned through suffering.

Support Makes My Home Possible

Support helps me manage and maintain all areas of my home.

Needing assistance does not make belonging less real.

If I lose support, I am at risk of losing my ability to maintain my home.

The consequences do not stop here.

My housing is linked directly to my employment, health and safety.

If supports are removed or cut back even by just a little, it can cause multiple parts of a person’s life to collapse.

Who would be there to pick up the pieces?

Support Workers Make My Life Possible

Support workers help me with the things many people take for granted.

They help me:

remember medication
recognise when my body needs food
identify hunger cues that I may not recognise on my own
prepare meals
maintain nutrition
drink enough water
attend appointments
communicate with professionals
Understand and take down information at appointments
take notes because of memory difficulties
manage my calendar
maintain my home
change bedding
complete laundry
keep track of important belongings like keys, phone, wallet and bag

problem-solve daily challenges
Access and provide transport - it is not comparable to simply ask “why not book an Uber” - Uber drivers get frustrated waiting for someon to get ready - and cannot provide help to me when I am strugglign to pack my bag or need someone to make my lunch before I leave. They expect someone to be ready. They don’t d like it when you forget something and ask them to double back for it. They can’t come back with you and help you look for your phone or wallet for 10 minutes. - when those things happen and things are always missing.
get to work - again remembering what you need to take to work is hard when you are Autistic and ADHD
maintain routines - helping you wake up, make your bed, wash and hang out laundry etc - all daily house activities
recognise when my health is deteriorating - my body and brain often don’t provide reliable signals for this

Support workers do not simply complete tasks.

They help prevent crisis. And the most important thing is - the support workers need to know you. This matters so much. When they get to know you and read you, they become more attuned to what you need. Especially when you’re in a shut down state. They can usually see what you need help with, just by reading the environment. Eg. Light ﬂickering in the room - they may know that’s a trigger. They can guide you to a room without a ﬂickering light or even block the light, helping you shift out of a freeze overload response and move out of an environment to safety.

Without support workers I am signiﬁcantly more likely to become overwhelmed, isolated, unwell and unsafe.

Removing support does not remove need.

It only removes the structure that stops need from becoming emergency.

Before I had adequate support workers, I did not live independently.

I survived.

There is a difference.

I went without basic care. I pushed through unsafe situations. I lived in environments that harmed me. I used recordings, notes, photos, checklists and emergency self- instructions because there was no reliable person physically present to help me organise, remember, regulate, plan or act.

These were not proper supports. They were crisis measures I created because I had no other option. They did not make the situation safe, sustainable or reasonable. They were evidence that I was surviving without the support I needed, not evidence that I was

managing.

Without support workers, my life does not become simpler or more independent.

It becomes unstable.

Small problems become large problems.

Missed meals become health decline.

Support workers do not physically bring food to my mouth. That is not what I mean when I say they help me eat.

They help me recognise when I am hungry and what my body signals are telling me.

For me, hunger does not always arrive as hunger.

Sometimes it arrives as dizziness, irritability or even exhaustion.

Sometimes hunger arrives as tears and I’m sitting on the kitchen ﬂoor having a panic attack because I feel sickg.

By the time I realise I have not eaten properly, I may already be physically unwell.

Support workers help prevent me from becoming unwell. They read my cues, help me identify what my body needs, help me choose food, help me start preparing it, and help make sure the task actually moves toward eating.

Without support:

Missed medication becomes crisis risk.

Unwashed bedding becomes hygiene and infection risk.

Missed appointments become untreated health issues.

Isolation becomes mental health deterioration.

Overload becomes shutdown.

Pain becomes immobility.

Lack of transport becomes loss of work and community access.

If someone with a disability experiences a direct crisis, support workers are often the only people in someone’s life, they are on the frontline doing whatever they can within their capacity to help prevent someone from reaching an even worse crisis.

Support Workers Keep Me Out of Hospital

Support workers are not the last resort after a crisis.

They are the reason crises can often be avoided.

Hospital is not the right place for someone like me when the problem is not one single medical event, but the collapse of daily disability support.

Hospital can treat an infection, it can respond to a fall, assess dehydration, dizziness, pain, injuries, medication issues or crisis distress.

But if it is distress in relation to a crisis that hasn’t got people on the ground helping, than the hospital would be discharging someone back into the community without adequate support. And the crisis would be there again, sending that person back to hospital.

Hospitals can be traumatising for Autistic people. The staff are not always aware of neurodivergent needs. I am often sent away from hospital because my needs are disability related not medical.

Loss of disability support is not a diagnosed medical condition that allows someone to be admitted to hospital. Though the impacts of not having support can cause symptoms to worsen to an extreme detrimental level.

Hospital cannot admit a person because they no longer have someone to help them eat, shower, take medication, attend follow-up appointments, wash bedding, manage pain, communicate with doctors, keep the house functional and prevent the same crisis from happening again.

Hospitals provide bandaids.

But bandaids are not even the appropriate treatment for what many people with disability need.

If someone needs help making a medication schedule, remembering to take their medication, having medication brought to them each day, and having someone make sure they have water with it, then giving that person medication in hospital for three days and sending them home with the rest of a seven-day course is not a solution.

It is literally a bandaid.

And bandaids like that can fall off as soon as the person gets home.

The problem was not simply that medication needed to be prescribed or handed over.

The problem was that the person did not have the daily support structure needed to take it safely and consistently.

The same applies to eating, drinking, showering, washing clothes, washing bedding, attending follow-up appointments and preventing decline before it becomes a crisis.

A person may be discharged from hospital with medication, but still have nobody at time to help them take it.

They may have nobody to wash their clothes while they are in hospital.

They may return home to the same unsupported conditions that caused the crisis in the ﬁrst place.

If someone is already spiralling into depression, exhaustion, pain, malnutrition, infection risk or overwhelm, how are they supposed to climb out of that alone?

The NDIS provides the bones of the support system that stops me, and other people with disability from needing more and more bandaids.

If support workers are removed, the consequences do not stay small.

If I do not have someone helping me remember and manage vital medication, my health can decline.

If I do not have someone helping me remember to eat, prepare food or eat properly, I can become dizzy, malnourished, deﬁcient, physically weak, emotionally unstable and at risk of collapse.

Without support to shower, maintain hygiene, wash bedding and keep my environment clean, people become at risk of sores, skin irritation, infections and recurring health issues.

Hospitals can treat an infection once it becomes severe, but without support at home the same problem can return.

If I do not have support workers to take me to a GP or help me explain what is happening, health problems may be missed until they become urgent.

If I experience a pain spike in the shower and fall, there may be nobody there to help me or check on me.

If I become overwhelmed, isolated, underfed, sleep-deprived, physically unwell and unsupported, my mental health will deteriorate.

These are not theoretical risks.

Myself and many others are at risk.

Life becomes frightening when there is nobody there to help when things get tough.

Removing NDIS support will not make me less disabled.
It will make me less safe.
It will move preventable problems into emergency systems, hospitals, crisis services and homelessness services that are already under pressure.
Taking people off the NDIS is not the answer.
Please ask the disability community for alternative answers to help cut costs. Read other peoples submissions. Think outside the box and look at other strategies. Removing us from the scheme is not the answer. It will only erase us from view and segregate us, causing great harm.

Public Holidays and Preventable Hospitalisation

Before I had adequate support, life was not just harder.

It was hell.

It was worse than crisis.

It was crisis becoming normal.

I have already experienced what happens when I do not have the right support in place. On Christmas Eve last year, I did not have the support I needed and I pushed myself beyond my capacity while trying to manage transport, physical exertion and basic needs on my own.

I do not have a car nor friends or family that can assist me with daily travel. Without transport support, I was forced to rely on public transport and push my body far beyond what was safe. On public holidays, public transport services in many areas run less frequently, with long waits that can stretch to around two hours in some areas.

I started running for a train - the last train of the day, but didn’t realise how far I was pushing myself. I became dehydrated, my asthma symptoms worsened, and the situation escalated to ambulance-level care.

I barely made the train within seconds, but soon had to get off the train where I collapsed on the ground of a train station. Bystanders called an ambulance, and I became non-verbal, without any support to help me speak. I was labeled as “non- compliant” and the ambulance staff pulled me into a sitting position, which caused an immediate pain spike due to my ﬁbromyalgia. I tried to pull away but they refused to let me move for some time, telling me I had to look them in the eyes and speak to them, but

looking up would mean staring into the blinding light they were trying to shine in my face
and I couldn’t work out how to tell them I was non-verbal. Nobody was providing me with access to my communication device or communication cards.

Being loaded into an ambulance, having someone clip in seatbelts and being taken to hospital without someone who understands my disability and can help me communicate is frightening. What I experienced was absolutely horriﬁc and deeply traumatising. People make assumptions and decisions about you without even consulting with you, because they assume you don�t understand or aren�t listening. No, it�s just that my words wouldn�t work. I was experiencing Autistic shutdown. I needed a support worker who knew me well and understood me.

This entire incident could have been prevented if I had support to drive me and help me stay organised and focused on the time.

In addition, support on days such as Christmas or Easter is signiﬁcantly more expensive -and these are the days most people want to connect and not be alone. Current public holiday support worker rates can be more than $150 per hour, depending on the support item. This makes public holiday support difficult or impossible to sustain within a yearly NDIS budget.

The cost creates a cruel choice.

I can stay home alone on Christmas, painfully isolated with nobody there to help, felling left out and alone.

Or I can try to go out without support and risk becoming unsafe, overwhelmed, standed, unwell or unable to get home safely.

Going out alone often leads to an exacerbation of my disability symptoms.

For someone with disability-related fatigue, pain, asthma, heat sensitivity, anxiety, communication difficulties or risk of overwhelm, that is not a minor inconvenience.

It can become a safety risk.

When leaving the house and going out to do things “Community Access” - (as the NDIA calls it) is based on a yearly budget, every high-cost public holiday shift uses up funding quickly.

This means disabled people may be forced to choose between spending a large amount of support funding to avoid isolation on one important day, or preserving funding (aka, htheir allocated hours) for ordinary survival needs across the rest of the year.

Because of this, I have had Christmases where I stayed home alone. Sometimes non- erbal I haven�t even been able to call Lifelife, because if I don�t and can’t speak, the person on the other end just hangs up.

Even during times where I am able to talk, when I am overwhelmed, unwell, in pain,

dehydrated, exhausted or overloaded, I may not be able to explain clearly what has happened, what I need, what my risks are, or have a way to safely return home from places such as hospitals.

Without support, hospital becomes another environment where I am expected to communicate, advocate and manage myself while already in crisis. With support, someone can help me access transport, avoid unsafe overexertion, plan the trip, notice that I am pushing too hard, remind me to drink water, eat, use medication appropriately, pace myself, stop before my body crashes, or seek medical care before it becomes an emergency.

With support someone can bring me items from my home to me when I am at hospital - like my communication device, headphones, clothing, comfort items like blankets or plushies, or even my assistance dog if she happens to not be with me at the time of the incident.

Without support, I keep going until my body fails.

This is not independence.

It’s a preventable deterioration.

My Assistance Dog Chloe Is Not Optional Support

My assistance dog Chloe is not a pet in the ordinary sense of the word.

She is a registered MindDog assistance dog and a disability-related support.

Chloe is a Cavalier King Charles Spaniel. I have had her since she was eight weeks old.

She is speciﬁcally task-trained to assist with the impact of my disabilities.

My Assistance Dog helps alert me when my symptoms are worsening.

She helps me identify and respond to panic attacks before they escalate.

She helps me move to quieter, safer environments when I become overwhelmed.

She helps reduce the impact of sensory overload and panic.

She supports me in ways that cannot simply be replaced by a support worker.

My assistance dog has helped keep me out of hospital. She has alerted me (by using her nose or paws to nudge me) to various concerns, such as an elevated heart rate, and assisted to help me regulate and recover.

She provides disability-related support that helps me remain safer in my home and in the community.
Without NDIS support, I may not be able to afford the costs associated with maintaining her care, training, health and wellbeing.
If I lost my Chloe’s support, I do not know how I would live safely.
Removing disability support does not only affect me.
It affects the support systems that help keep me alive and out of crisis.

Community Access Is Not a Luxury

Support is not only about avoiding crisis.

Support is also about participation.

Many people assume disability support is only needed when something goes wrong. That is not true. Disability support helps someone maintain their life and manage it daily.

Support workers help me participate in ordinary life.

They help me attend movies, concerts, access my community, maintain social connection.

They help me experience things that many non-disabled people take for granted.

I have my Companion Card and use this so that my support workers are able to support me out and about in the community.

Companion Cards are approved for people with significant and permanent disability who have a lifelong need for attendant care support to access the community.

“Companion” is often the polite word used in public schemes. I think language like this can make it sound softer, as though it is less confronting to need care or support while we are out in the community living our lives.

In real life, many disabled people do not have family or friends who can be that person for us.

That matters.

My Companion Card formally recognises that I cannot participate in most community activities without attendant care support due to the impact of my disability.

It allows my “companion” to enter participating venues or events for free, but the card

does not magically create the “companion”.

Without a support worker, I would not be able to safely manage the logistics of attending many community activities.

I may become overstimulated, disoriented or lost in a crowd with no safe person there to help me. In that state, I may become vulnerable to trusting the wrong person for help.

Paid support workers are essential to help keep me safe in public spaces.

They help me plan transport, manage sensory overload, communicate, make decisions, leave safely if I become overwhelmed, and avoid situations where I could be taken advantage of.

With a Companion Card, I may technically have the right to attend something, but not the practical support to actually go.

We need trained and/or experienced people, particularly people who know us well enough to understand our disability, communication, risks, triggers, routines and support needs.

For many of us, that “companion” is a carer or support worker. Having the card means we do not have to pay for an additional ticket.

The back of the card states “The holder of this card requires the support of a companion. It is recommended that the companion be issued a ticket or admission at no charge, to assist you to comply with the principles of the Anti-Discrimination Act (NSW) and the Disability Discrimination Act (Cth)”

Without that person/ “companion”, the access does not exist in practice.

Without support, my world becomes smaller.

Disabled people become increasingly isolated.

We stop appearing in public spaces, at work.

We stop appearing on buses and trains, in shops, parks, libraries, schools, childcare centres, events and community spaces.

Then, over time, society forgets we were ever there.

That is not inclusion.

That is social erasure.

Safety, Communication and Autistic Shutdown

I have experienced autistic shutdowns and meltdowns in public settings where I became non-verbal and unable to communicate effectively.
After a social event this year, I experienced a significant autistic meltdown after misreading another person’s body language, facial expression and tone.
I thought the person was joking, but they were serious.
After the event ended, I burst into tears and fell to the floor of the venue.
I became non-verbal and could not get myself up.
Security staff were unsure how to help me.
I had attended the event with my mother, but we became separated during the event.
My mother has her own disabilities and has never known how to understand my disabilities, let alone how to help me manage social interactions, autistic overwhelm or meltdowns.
When security asked her what to do, she did not know.
She told them I was autistic, but when they asked whether I had anyone else with me, she froze and did not appear to know how to respond.
Fortunately, I had a support worker who had just arrived for their shift and was waiting in the car outside to pick me up.
I managed to contact him.
He came into the venue and provided the specific regulation support I needed.
He communicated with security and explained that what was happening was part of my disability.
He helped reassure them I was trying my best to get up from the floor, but that pressure would not help me move faster.
He became a barrier between me, my panicking mother (who was not at all helping me regulate) and security so I had enough breathing space to gather my thoughts, regulate and begin moving again.
He helped me calm down enough to get off the floor and leave safely. I cried the whole way home.
The venue was at risk of closing and staff were trying to get me out, but I had frozen and could not move.

My fear in situations like this is that I may appear to be deliberately not listening to instructions, refusing to cooperate or being unreasonable, when in reality I am experiencing an autistic shutdown response.
Without the right support person present, this can easily be misunderstood and escalated.
Authorities could be called because other people may not understand that I am not choosing not to respond.
When I am severely overwhelmed, I am unable to process, speak or move effectively in that moment without disability-specific support.
Without that support worker, I would not have been able to get myself off the floor. And it made all the difference that I had chosen that worker to support me. It was not just some random support worker that had never met me before. We knew each other enough for him to know how to help.
On the drive home, my support worker gave me space and time to unravel and process the social interaction.
He helped me understand that I had misread the other person’s tone and that the situation had overwhelmed me.
His support prevented the situation from escalating further.
My mother cared, but she did not know how to help.
In fact, she made things worse by accident when she said she would not feel comfortable going to an event with me again if that happened.
She was outside her comfort zone.
She was not the right support person for that situation - and she has never known how to be there for me in the ways I need. This is why trained, experienced, known support workers matter.
A family member or informal support may care about the person, but care alone does not always equal capacity, skill or safety.

Exploitation and Vulnerability Without Safe Support

Before I had appropriate support, I often relied on people who were not safe because I had nobody else.

I also had people in my life who treated me badly, and I tolerated it because I thought, “At least they are helping me. At least they are talking to me.”

Some people took advantage of me financially.

I felt obliged to give them money or buy them things just so they would give me a lift somewhere or help me with something I could not do alone.

If I needed extra help, took too long, or asked for support to make decisions, they could become angry.

I put up with it because I had nobody else.

I was barely surviving.

On the surface, it may have looked like I was doing okay.

I had become good at hiding the truth from people because of shame.

Shame held me back from talking about the abuse, exploitation and unsafe treatment I was experiencing.

When disabled people do not have enough safe, reliable support, they can become vulnerable to accepting unsafe, exploitative or harmful treatment because the alternative is having no help at all.

That is not independence.

That is vulnerability created by lack of support.

Unsafe Support and Choice and Control

Choice and control are not decorative words in the NDIS.

They are central to safety.

Disabled people must be able to choose supports carefully.

Trust, compatibility, safety and communication matters.

I have had experiences with unsafe or harmful support, including workers who yelled at me, called me names, behaved unsafely, ignored my communication needs, or made me feel more distressed instead of safer.

When a person is already vulnerable, isolated or dependent on support to leave the house, attend appointments, work, shop or communicate, unsafe support can do real damage.

If a participant is forced to use a provider or worker who does not understand them, behaves unsafely, scares them, ignores their communication, drives unsafely, breaches boundaries, or yells at them, the participant may not be able to safely speak up.

This is especially concerning when the options for different workers are all employed by the same provider.

If a participant complains about unsafe behaviour, they may fear retaliation, withdrawal of support, being disbelieved, or being left without alternatives.

The answer is not to reduce choice.

The answer is to protect choice and strengthen safeguards.

Participants need real options to leave unsafe support arrangements without losing access to essential support. Participants also need an option to chose their workers individually (such as by using Hireup or working with a sole-trader, who may actually offer cheaper rates per hour than other providers and be just as skilled, if not more) Supports should have options to be selected based on interviewing to see if that person is a good ﬁt.

There should be stronger protections to stop unsafe workers and providers causing harm, including:

accessible complaint pathways
protection from retaliation after complaints
independent advocacy support
easier pathways to change workers or providers
clear reporting obligations for unsafe conduct
stronger accountability when workers yell at, intimidate, insult or mistreat participants
recognition that emotional and psychological safety are disability safety issues
recognition that losing choice can trap participants with unsafe support

If the system reduces individual choice and control, it risks trapping disabled people with workers or providers who are not safe for them.

That is unacceptable.

The NDIS Supports My Ability to Work

I am a support worker myself.

I work with disabled participants.

I know from both sides of the system that support does not make people dependent.

The right support makes participation possible.

I started this work because I wanted disabled people to have a real chance at a decent life.

Not a fancy life.

Not a glamorous life.

Just a life where people feel they fit somewhere, where they are heard, and where their dreams, ambitions and biggest goals can become possible, even if they are not guaranteed.

I wanted to see children develop, flourish and become the best versions of themselves.

I wanted to help create lives where fewer people are left to needlessly suffer because of neglect, lack of support, exploitation, unsafe systems or people who do not understand them.

This work matters to me because I know what it is like to be unsupported.

I know what it is like when people do not listen until damage has already been done.

Without support workers helping me get ready, manage transport, organise tasks, regulate, recover and keep my home functioning, I cannot reliably maintain work.

If I cannot work, I lose income.

If I lose income, I cannot maintain housing.

If I cannot maintain housing, I am back in crisis.

This is how quickly one support cut becomes a chain reaction.

Policy documents often separate housing, employment, health, transport and disability support into neat categories.

Real life does not.

In real life, one removed support can collapse five other things.

Children Need Individualised Support

I am also concerned about the impact of changes on children, including autistic children and children with developmental delay, communication disability or complex disability needs.

I have worked in inclusion support in childcare.

I have seen what happens when there is not enough individualised support.

At times I was required to support multiple children at once.
The children with the highest needs tended to receive more attention because their needs were more urgent.
Other children still needed support, but could not receive enough individual attention.
That was not because workers did not care.
It was because there was not enough support.
Non-speaking children needed help learning to use communication devices.
Other children needed support with regulation, safety, sensory overload, transitions, social interaction and participation.
While one child was being supported, another child’s needs could escalate.
Children would seek attention or express unmet needs through actions like throwing things because the system did not provide enough individualised support.
Children are not interchangeable.
Autistic children have different sensory, communication, emotional and developmental needs.
One change in routine can cause distress, shutdown or meltdown.
A child may need support from someone who knows their cues, understands their communication, recognises overload early and can respond before distress escalates.
Familiar supports matter.
Choice and control matter.
Individualised support matters.
I am concerned that approaches such as Thriving Kids may reduce access to individualised supports for children and families who need them.
Children should not lose access to trusted individual supports because a system decides that grouped, generic or mainstream support is administratively simpler.
Administrative simplicity is not the same as safety.
Families, children, early childhood workers, therapists and disability advocates must be meaningfully consulted.
Children and families should not be pushed into models of support that do not meet their actual needs.

The Announcement Itself Has Already Caused Harm

I am deeply concerned by the way information about proposed NDIS changes has reached disabled people.

Many people were not provided this information directly at all.

That failure comes before accessibility.

People cannot understand or respond to information they were never given.

Even where information was technically available somewhere, that does not mean it was provided in a way disabled people could ﬁnd, process, understand and act on.

Many people do not know what this information means for them.

Some providers and workers do not appear to understand it either.

As disabled people, how are we meant to process the consequences of proposed changes when some of the people paid to support us do not understand those changes themselves?

Why was clear information not provided directly to disability support workers, providers, plan managers, support coordinators, advocates, allied health professionals and other people working with NDIS participants?

Why was information not provided directly to participants in Easy Read, Auslan, screen- reader-accessible formats, dyslexia-friendly formats, plain language, audio, phone- based explanation and other accessible formats for people who need them?

Why were participants expected to ﬁnd and interpret information themselves instead of having information delivered to them in ways they could access, understand and respond to?

Not providing information directly to disabled people, and then not providing it in accessible formats, means many people are denied a real chance to make sense of changes that may affect their housing, support, health, safety, work and lives.

Whether or not this was intended is irrelevant.

The result is exclusion.

This raises serious access, equity and discrimination concerns.

The NDIS is disability-related support.

Information about changes to that support must be provided directly, clearly and accessibly to the disabled people who rely on it.

I recently met a man on a train who used a walking cane.

He told me he had had a brain tumour removed and received eight hours of support per week.

He knew about the NDIS, but he did not know about the proposed Bill and changes.

I had to explain it to him and give him information with a QR code so he could access further details.

That moment stayed with me.

If a disabled person receiving support does not know about changes that may affect their life, the communication system has failed.

Disabled People Without a Voice Must Not Be Left Behind

The fact that I am writing this submission should concern you.

Many disabled people cannot.

Some people cannot read the information.

Some people cannot understand the information.

Some people have not been given the information.

Some people are too overwhelmed, frightened, isolated or unsupported to respond.

Some people rely on the very supports now under threat to help them understand government communication, complete forms, attend appointments and advocate for themselves.

The people most affected by these changes may be the least able to tell you what those changes will do.

Please do not mistake silence for safety.

Please do not mistake lack of submissions for lack of impact.

Please do not mistake survival for capacity.

The people who cannot respond are often the people most at risk.

Recommendations

I ask the Committee to:

1. Reject or pause any changes that would remove or reduce individualised
   supports without proper consultation, accessible information and safeguards.

2. Ensure no participant loses essential supports without an individualised assessment of the real-life consequences for housing, health, safety, work,

communication, daily functioning, transport and community access.

3. Protect participant choice and control, including the right to choose safe, trusted

and appropriate support workers and providers.

4. Ensure participants have real pathways to leave unsafe workers or providers

without losing access to essential support.

5. Strengthen safeguards against unsafe support, including yelling, intimidation,

name-calling, coercion, unsafe driving, boundary violations, retaliation after complaints and emotional or psychological harm.

6. Fund independent advocacy and communication support so participants can

understand, respond to and challenge decisions that affect their lives.

####### 7. Provide direct, accessible information to all participants in multiple formats, including Easy Read, plain language, Auslan, dyslexia-friendly formats, screen- reader-accessible formats, audio, phone support and web chat.

######## 8. Ensure providers, support workers, plan managers, support coordinators, allied health professionals and advocates receive clear information so they can support participants to understand changes.

######### 9. Protect assistance dogs and disability-related animal supports where they are directly connected to a participant’s disability needs and safety.

########## 10. Protect individualised supports for children, including autistic and non-speaking children, and consult directly with families, children, early childhood workers, therapists and disability advocates.

########### 11. Recognise that uncertainty itself causes harm and provide immediate support to participants distressed by proposed changes.

############ 12. Ensure disabled people who cannot write submissions are still heard, including people with intellectual disability, cognitive disability, communication disability, youth impairment and people without informal supports.

############# 13. Recognise that removing support does not remove need. It transfers that need to hospitals, crisis services, homelessness services, informal networks and disabled people themselves.

Conclusion

The NDIS is not perfect.

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Disabled people know that better than anyone.

But cutting, restricting or redesigning supports without listening to the people who rely on them will not make us independent.

It will make many of us disappear from community life.

Some people will disappear into their homes.

Some will disappear into hospital systems.

Others into homelessness.

Then some will find themselves in and out of crisis services.

Some will be trapped with unsafe people because they have no alternatives.

Some will not survive.

For me, losing support will not create independence.

It will create instability.

It will increase risk.

Increase isolation could lead to hospitalisation.

It will increase my vulnerability to exploitation.

It will increase the likelihood of homelessness.

Reduce my ability to work.

Reduce my ability to participate in society.

It will undo years of recovery that therapy and support has made possible.

Support is not a luxury.

It is not a reward.

Support is infrastructure.

Attached to it are people’s homes.

People’s jobs.

People’s dogs.

People’s meals.

People’s medication.

People’s communication.

People’s safety.
Their futures.
Please do not mistake support for excess.
Please do not mistake survival for capacity.
Please do not mistake fear for misunderstanding.

We understand enough to be terrified.

I am asking the Committee to stop and understand the real human cost before decisions are made that disabled people may not be able to recover from.

I am still alive because support has made survival possible.

Please do not take away the structures that keep me, and many others, standing.