Submission 2843
SUBMISSION TO THE JOINT STANDING COMMITTEE ON THE NDIS
National Disability Insurance Scheme Amendment Bill 2026
Submitted by: Date: 1 June 2026
- INTRODUCTION My name is
I am a Mother and Carer of an NDIS Participant, and a person with substantial disabilities currently going through the NDIS access review process.
I recognise the importance of ensuring the long-term sustainability of the Scheme, however, I am strongly opposed to the NDIS Amendment Bill 2026 in its current form. My submission draws on my lived experience — both as a person with a disability and as a Carer.
I am a 51-year-old prospective NDIS participant living in regional Victoria. I live with
Hypermobility Spectrum Disorder, Pain Sensitisation Syndrome/Central Sensitisation Syndrome
(CSS) — which includes Fibromyalgia, Chronic Fatigue Syndrome (CFS/ME) — Allodynia, Degenerative Disc Disease in my lumbar and cervical spine, Coccydynia, Temporomandibular Joint dysfunction, Osteoarthritis in my spine, knees, hips, ankles and fingers, Bowel Prolapse, Irritable Bowel Syndrome, Ventricular Ectopy (palpitations), bilateral meralgia paresthetica, Genital Hyperarousal Syndrome, severe nerve root compression in cervical spine at C4/C5, C5/C6, C6/C7 — ACDF C5/C6 July 2025, Bertolotti’s Syndrome with Sacroiliac joint dysfunction which led to a spinal fusion L4/L5 and SI joints fusion in June 2023, post-operative complications of bilateral hip fractures, Scoliosis, Piriformis syndrome, Anterior Inferior Carotid Artery loops Type 2, causing Pulsatile Tinnitus (right ear), Bilateral Tinnitus, bilateral hearing loss, Laryngopharyngeal Reflux, Complex PTSD, Major Depressive Disorder with melancholic features, Generalised Anxiety Disorder, Agoraphobia and ADHD, combined presentation (inattentive and hyperactive).
These are permanent, progressive, and complex conditions that have substantially and permanently reduced my functional capacity across multiple domains. Despite this, I was recently denied access to NDIS funded supports.
I rely on a walking stick at all times, but to mobilise in the community I rely on my husband to push me in a manual wheelchair. I can stand for approximately five minutes before my pain and fatigue escalate. I can walk approximately 15 metres before pain causes me to stop and rest. The maximum I can walk at any one time is approximately 50 metres. I spend between 10 and 14 hours of my day in bed. Attending just one appointment depletes my energy and I require time to recuperate. These restrictions are not occasional limitations — this is my daily reality.
Submission 2843
I am a Carer for my adult son who is 28 years old. He has significant intellectual, physical and motor disabilities. After I became too impaired to continue caring for him, he moved into temporary Medium Term Accommodation (MTA) then permanent Specialist Disability Accommodation (SDA). It then took two years of incorrect plans, reviews and Administrative Review Tribunal (ART) action for NDIS to finally work out the correct funding to properly support him.
Due to my son’s unique support needs, he has 24/7 support at a 1 to 1 staffing ratio. He cannot live with others and lives in a 1 participant SDA residence, with onsite overnight support (OOA).
I have, and continue to, suffer through exhausting bureaucracy and extensive administrative failure by the NDIA that continues to cause me serious and ongoing harm. My son’s supports have not come without an extensive battle with NDIS to secure the appropriate level of funding he requires to adequately support him.
We have experienced systemic issues from the commencement of his NDIS supports, including forms being lost, critical documents not being uploaded or actioned, disabilities not being recorded in their systems, and failure to act on, or escalate to, the appropriate delegates. A litany of NDIS errors have cost us thousands of dollars, and irreparable emotional harm and stress.
Disabled people are still being dragged through exhausting bureaucracy simply to justify their most basic supports.
I urge the Committee to reject the provisions of this Bill that would restrict access, reduce supports, and remove choice and control from disabled people. Choice and Control are the very basic principles the NDIS was established on, yet this Bill seeks to remove these, and subsequently remove any autonomy from people with disability. The Bill, as drafted, will cause direct harm to people like me, to my son and to thousands of others across Australia.
Further, I draw attention to the inadequate consultation period for this review. People with disabilities — particularly those with fatigue-related conditions, or cognitive impairment — require significantly more time to prepare the quality evidence this review deserves. A barrier of meaningful participation has been created by the incredibly tight timeframe, which is in contrast to the publicised suggested timeframes for government consultation for a significant program or service reform.
- ACCESS TO THE NDIS I have direct and personal experience of what it means to have NDIS access wrongly denied. On 1 April 2026, the NDIA called me to deny access to the Scheme. I was advised my disabilities were not permanent, and that I had not proved I had fully exhausted all treatment options. This is despite me providing extensive information regarding permanence, and having undergone extensive treatments including multiple invasive surgeries.
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My physical disabilities are not well known, and therefore my situation is more complex when applying, as I have also had to provide information about WHAT my disability diagnosis actually is.
I have lodged a request for a review of this decision, and am currently awaiting the outcome. This came with significant additional expense to gather the additional, very specific information the NDIA required, despite this having already been provided.
In my application, I provided a consistent body of medical, specialist, and allied health evidence confirming my permanent functional impairments, especially noting these were degenerative in nature. It was clearly noted on all reports that not only are my disabilities permanent they are also degenerative in nature — yet NDIA denied my access.
As a result, I have been left without much-needed supports for months. I cannot cook nutritious meals, maintain my home, access appropriate allied health supports and the appropriate equipment I need to support my disabilities. My physical condition has further deteriorated, and my risk of falls continues to increase. I have suffered significant mental health decline. The stress of the NDIA’s access denial led me to have increased thoughts of self-harm.
This proposed Bill will embed into legislation the very approach that caused the harm I have experienced: a narrow, deficit-focused assessment of functional capacity that fails to account for the fluctuating, invisible, and complex nature of conditions like Central Sensitisation Syndrome and my underlying Fibromyalgia and CFS/ME.
Completion of the WHODAS 2.0 indicated I experience a severe level of impairment (78.65%) as a result of my physical disabilities. I scored in the severe range for self-care, mobility, and life activities. My participation in the community was rated even higher, at 93.75%, reflecting the combined impact of pain, fatigue, and physical impairment on my ability to engage in social and community activities. On the Widespread Pain Index and Symptom Severity, I scored 30 out of 31.
The proposed Bill’s approach to functional assessment would not have appropriately captured this information. This would leave me, and many others with similar conditions as mine, without the supports we are entitled to, and desperately need in order to function on a daily basis.
The Bill’s requirement to exhaust all available treatments as a condition of access is deeply inequitable. Many evidence-based treatments for my extensive conditions — physiotherapy, clinical pilates, occupational therapy, hydrotherapy, remedial massage — are not covered by Medicare at the frequency required to manage my conditions. A Medicare chronic disease plan provides only five allied health sessions per year. My physiotherapist has documented I require twice-weekly physiotherapy sessions to prevent functional decline, this does not consider what is required to also regain or improve my functional capacity. Requiring people with disability to exhaust inadequate mainstream options before accessing the NDIS is not a meaningful threshold — it is a barrier that will disproportionately exclude those with the greatest need.
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Further, with regard to mental health conditions, the requirement to “exhaust all treatment options” removes the right to decline treatments such as Electroconvulsive Therapy, or Repetitive Transcranial Magnetic Stimulation (rTMS), that carry significant side effects for some people. This removes our basic right to medical autonomy and choice.
I live in rural Victoria in an area with no public transport. There are times that I am unable to drive due to the nature of my disabilities. Therefore, the suggestion that mainstream services are available for me to readily access is not grounded in the reality of where I live, or the reality of my disabilities.
- INDIVIDUALISED PLANS Due to the nature of my conditions, my daily functioning changes day to day. The nature of these conditions mean functional capacity also changes from person to person. Intrinsic to these conditions are fluctuating symptoms. This is well-documented in readily available and extensive clinical literature.
Some days I can function enough that I can access the community independently. Other days I am bed-bound, in severe pain, and unable to perform the most basic acts of self-care without help. Post-exertional malaise means that activity on one day results in a functional crash that lasts for days. A busier than normal day results in severe whole-body pain, nerve pain, stabbing and burning sensations, and the need to heavily medicate to avoid an acute medical emergency, where ambulance attendance and hospitalisation is required.
Any NDIS plan I receive needs to reflect my reality. I require domestic assistance, meal preparation support, community access, allied health, assistive technology, and support coordination — not because I have a diagnosis the same to others, but because my functional capacity means I require these specific supports. Another person with similar diagnoses as me will have different living arrangements, different informal supports, different functional thresholds and different support needs.
In my circumstance, outside of my husband, I have no informal support network that the NDIA can rely on to substitute for my funded supports. He works full time to support us both, and our children studying at university, and cannot afford to be constantly taking leave to support me.
The Bill’s approach — which moves toward standardised support packages and away from individually tailored plans — will ultimately fail people whose needs do not fit the planned predetermined templates and assessment tools, and those who are unable to clearly articulate their support needs.
My needs are complex, interdependent, and evidence-based. They have been assessed by an Occupational Therapist, a Physiotherapist, a Rheumatologist, three Psychiatrists, my GPs, two Psychologists, an Orthopaedic Surgeon, and two Neurosurgeons, all of whom clearly confirmed my supports are necessary, reasonable, and clinically justified. A system that substitutes
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ministerial discretion for this level of individualised assessment is not a system that will serve the many Australians with disabilities.
- REDUCTIONS IN SUPPORT The Bill’s proposal to grant the Minister power to reduce Social and Community Participation funding by up to 50 per cent is particularly alarming. Community access should not be considered a luxury. They enable my son to attend medical and therapy appointments — appointments he is unable to access without support. Social and community participation is not separate from our health — it is integral to it.
A 50 per cent cut to this budget would mean people could no longer attend craft groups, community events, or basic daily appointments. Removing them would accelerate the cycle of isolation, mental health decline, and physical deterioration that people with disability work hard to prevent.
To hear that an across the board “percentage reduction” will be applied to NDIS participants funding is an appalling thought. It gives no consideration the knowledge that participants with this support rely on this heavily, just to achieve a semblance of normalcy. In effect, it will exclude people with a disability from their community and hide theme away from the “normal” world. It is disgraceful that we are reverting to a system that excludes and isolates a group of people, just because they lost the disability lottery.
The Bill also returns the onus to support our adult children back onto families. In our case, this is simply not an option. I cannot physically care for him or support his needs and it would place both of us at significant risk.
But, most upsetting of all. This action reduces us to a percentage to apply, we become a “problem” to solve, not an individual, but a number, a funding amount, no longer a person with the right to exist in society. No consideration is given to our individual needs or circumstances with this approach.
As a collective group of people, we are about to be silenced by this Bill, locked in our homes, forced back into living with strangers, all because we were born with, or acquired a disability. Please, do not silence our voices, diminish our presence, or take away our most basic of supports, just because our very presence makes you uncomfortable, and costs money to provide. We matter too.
I also strongly oppose the Bill’s proposal for group programs to substitute for individual social and community participation funding.
My son now volunteers with two local community groups, is about to start a specialist program to provide support and information regarding safe and respectful relationships, is going to do a couple of short courses and is starting to look for a business who would be willing to employ him
Submission 2843
with his Support Workers shadowing him. He is learning to budget, cook his own meals, clean his home, do his laundry. All the things a non-disabled person takes for granted. He is not just surviving, he is thriving. Without NDIS, none of this would be possible.
The power, at ministerial discretion, to make further cuts at any time remains a source of profound anxiety. The uncertainty of not knowing what supports will be available in future plans directly affects my son and me. The NDIS is supposed to provide certainty and dignity. This Bill demonstrates this will no longer be the case, and instead implements a system in which supports can be reduced at any time by ministerial decision does neither.
- 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.
For my son, we employ our own team of independent Support Workers, and have a model in place that allows a Team Leader to take care of all the day to day problems, such as replacing unwell staff, so I can keep on top of the higher level aspects, such as compliance and managing his plan. It is working exceptionally well.
I have taken years to find the right fit for my son’s Plan Manager. They understand our team structure, his plan and his support needs, and they do an exceptional job of it too. We are now at risk of losing this valuable support because, for whatever reason, the government has decided to close this market down to a few hand-picked providers, who we know nothing about, but will be forced to use. Whatever happened to the “choice and control” the NDIS was founded on?
- CONCLUSION I appreciate that there are aspects of the NDIS that have not worked well, however, significant elements of the Bill, as currently drafted, introduce uncertainty, risk, and potential harm to people with disability and the supports we rely on daily. Many of the reforms shift critical decisions into legislative instruments or future design processes, without sufficient detail, consultation, or safeguards.
We, as disabled people, have become not a group to support, but a problem to fix, to get rid of, to send off to hide back away in our homes, or in a group home because we are “too expensive”, “defrauding NDIS”, or just wanting to simply exist with the same rights as the “normal” people.
We want to shower when we want to, we want to live how we want to – not when we are told to, we want to study, we want to work, we want to volunteer and give back to our communities, we simply want to be able to access our community – but to do so means we need help, whether this is an appropriate wheelchair, a Support Worker, or some other type of support. Not because we
Submission 2843
want to game the NDIS, but simply because we need it to achieve some of the most basic things you “normal” people take for granted.
The NDIS changed my son’s life, and I’m hoping in the near future it will change my life too. But, even now - before this Bill was introduced we are still forced to constantly justify our existence to a system that was built to support us.
You — as a party — cannot sit there and pat yourselves on the back as being champions of people with a disability, whilst cutting our critical supports and basic lifelines. You claim to represent vulnerable and marginalised people, whilst presenting a Bill that fails to ensure those very people can safely exist.
I voted for the Labor Party at the latest federal election excited that Bill Shorten would be the Minister for Disability, excited that I was voting for a party that branded itself as inclusive, that was building a country where people with a disability were not just tolerated, we were valued.
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 cause harm. It does not fix the ridiculous amount of administrative burden on participants. It does not repair the embedded culture of poor decision-making at the NDIA. It does not provide the certainty and dignity that disabled Australians deserve.
I urge - in fact, I beg - the Committee to recommend this Bill is not passed in its current form. The NDIS must be strengthened — not diminished. As disabled Australians we deserve a scheme that recognises the complexity of our lives, respects our practitioners’ expertise, and holds the NDIA accountable for the decisions it makes. This Bill does not do that.
Victoria
1 June 2026