National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 210
SUBMISSION TO THE JOINT STANDING COMMITTEE ON THE NDIS National Disability Insurance Scheme Amendment Bill 2026
Submitted by: Veronica Stephan-Miller Date: May 2026
- INTRODUCTION
My name is Veronica Stephan-Miller. I am a 56-year-old NDIS participant living in southwestern Melbourne, Victoria. I live with Fibromyalgia, Chronic Fatigue Syndrome (CFS/ME), Seronegative Spondyloarthropathy (Ankylosing Spondylitis), Major Depressive Disorder, and Ischaemic Heart Disease. These are permanent, progressive, and complex conditions that have substantially and permanently reduced my functional capacity across multiple domains.
I rely on a powered wheelchair for mobility — both indoors and in the community. I can stand for approximately one minute before pain and fatigue escalate. I can walk approximately 20 metres before becoming completely exhausted. I spend between 16 and 18 hours per day in bed. Even attending a single medical appointment depletes my entire day’s energy. These are not occasional limitations — they are the daily reality of my life.
I am strongly opposed to the NDIS Amendment Bill 2026 in its current form. This submission draws on my lived experience, extensive clinical documentation, and a history of administrative failure by the NDIA that has caused me serious and ongoing harm. 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. The Bill, as drafted, will cause direct harm to people like me — and to thousands of others across Australia.
I note that the consultation period for this submission has been inadequate. People with disabilities — particularly those with fatigue-related conditions — require significantly more time to prepare evidence of the quality this process deserves. The tight timeframe is itself a barrier to meaningful participation.
- ACCESS TO THE NDIS
I have direct and personal experience of what it means to have NDIS access wrongly revoked. In September 2024, the NDIA revoked my participant status, finding I no longer met the disability access criteria — despite five years as a participant and a consistent body of medical and allied health evidence confirming my permanent functional impairments.
The NDIA acted on the advice of its internal Technical Advice and Practice Improvement Branch (TAPIB), which itself acknowledged that the evidence regarding my mobility domain was “inconclusive” and that further objective information would be beneficial. Rather than obtain that information, the NDIA revoked my access. The Administrative Review Tribunal later found that this approach was “troubling” and that the removal of supports from a vulnerable person posed an “unacceptable risk” to my wellbeing.
I was left without funded supports for months. I could not cook nutritious meals. I could not maintain my home. My physiotherapy ceased, my physical condition deteriorated, and my risk of falls increased. My mental health declined significantly. My GP documented that the stress of the funding removal led me to have increased thoughts of self-harm.
I was ultimately vindicated. In May 2025, the Administrative Review Tribunal set aside the revocation decision, finding that I meet the disability requirements under section 24 of the NDIS Act. The NDIA agreed. My access was restored — but only after months of harm that cannot be undone.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 210
The proposed Bill would embed into legislation the very approach that caused me this harm: a narrow, deficit-focused assessment of functional capacity that fails to account for the fluctuating, invisible, and complex nature of conditions like Fibromyalgia and CFS/ME. My Occupational Therapist’s WHODAS assessment found that I experience severe difficulty in “life activities” and “participation in society” — both scored at 100% difficulty over the preceding 30 days. The Bill’s approach to functional assessment would not have captured this. It would have left me, and many others like me, without the supports we need and are entitled to.
The proposed requirement to undergo treatments as a condition of access is deeply inequitable. Many evidence-based treatments for Fibromyalgia and CFS/ME — physiotherapy, hydrotherapy, remedial massage — are not covered by Medicare at the frequency required. A Medicare chronic disease plan provides only five allied health sessions per year. My physiotherapist has documented that even twice-weekly physiotherapy sessions are insufficient to achieve clinically significant improvement for my condition. Requiring people in my circumstances to exhaust these 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.
I also live in the outer suburbs, an area with extremely limited public transport. The nearest bus stop is 1.7 kilometres from my home — a distance that exceeds my entire daily walking capacity. The suggestion that mainstream services are available to me is not grounded in the reality of where I live, or the reality of my condition.
- INDIVIDUALISED PLANS
My disability does not present the same way from day to day, or from person to person. My Fibromyalgia and CFS/ME cause fluctuating symptoms — a pattern that is intrinsic to these conditions and well-documented in the clinical literature. On some days I can sit upright and engage in light conversation. On other days I am bed-bound, in severe pain, unable to process basic information. Post-exertional malaise means that activity on one day can result in multi-day crashes. A single physiotherapy appointment combined with a short errand has resulted in severe whole-body pain, burning sensations in my legs, and the need to remain in bed the following day.
My NDIS plan needs to reflect this reality. I require domestic assistance, meal preparation support, community access, allied health, assistive technology, and support coordination — not because I share a diagnosis with others, but because my individual circumstances demand these specific supports. Another person with Fibromyalgia may have different living arrangements, different informal supports, or different functional thresholds. My housemate has his own disability. He cannot drive, cannot safely lift my wheelchair, and cannot provide ongoing care. I have family in Victoria and interstate, but they are not available for routine support. There is no informal support network that the NDIA can rely on to substitute for my funded supports.
The Bill’s approach — which moves toward standardised support packages and away from individually tailored plans — will fail people whose needs do not fit a predetermined template. My needs are complex, interdependent, and evidence-based. They have been assessed by an Occupational Therapist, a Physiotherapist, a Rheumatologist, two GPs, and a Counsellor — all of whom have independently confirmed that my supports are necessary, reasonable, and clinically justified. A system that substitutes ministerial discretion for this level of individualised assessment is not a system that will serve me — or the many Australians like me.
- REDUCTIONS IN SUPPORT
I have already lived through what it means to have supports reduced. When my NDIS funding was significantly cut in the period leading up to the revocation of my access, I was forced to overexert myself to maintain my home and prepare basic meals. The result was a direct and documented deterioration in my functional capacity. I moved from using my powered wheelchair occasionally to using it indoors for most of the day. My physiotherapist documented that I had declined from
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 210
performing eight exercises per appointment to two or three, with greater rest required between each. My WHODAS scores declined across three domains in twelve months.
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. My community access supports are not a luxury. They enable me to attend medical and therapy appointments — appointments that are themselves what maintain my remaining functional capacity. My counsellor has documented over five years of clinical observation that when my mental health deteriorates, my sleep quality declines, which directly triggers severe fibromyalgia flare-ups. Social and community participation is not separate from my health — it is integral to it.
A 50 per cent cut to this budget would mean I could no longer attend craft groups, community events, or family visits that are currently supported under my plan. These are not peripheral activities. They are the activities that provide me with reason to get out of bed on difficult days. Removing them would accelerate the cycle of isolation, mental health decline, and physical deterioration that my clinical team works to prevent.
I also strongly oppose the proposal for group programs to substitute for individual social and community participation funding. I have sensory sensitivities and unpredictable symptoms. A fixed group schedule cannot accommodate the reality of my condition. On a bad day, I cannot leave the house. On a good day, I may have capacity for one to two hours of activity before needing to rest. Individually coordinated community access — with a support worker who knows my needs and can pace activities accordingly — is the only format that works for me. A group program would not.
The power to make further cuts at any time, at ministerial discretion, is itself a source of profound anxiety. The uncertainty of not knowing what supports will be available in future plans directly affects my mental health and my ability to plan my own life. The NDIS is supposed to provide certainty and dignity. 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. I have established 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 significant 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.
My plan manager and support coordinator work for me. They help me navigate a system that is, as my own experience demonstrates, capable of significant administrative error. My former support coordinator submitted clinical evidence to the NDIA on multiple occasions. The NDIA’s own CRM records — which I have obtained — show that planner after planner recorded confusion about my disability classification, made decisions without adequate evidence, and failed to act on their own concerns. My support coordinator and plan manager were a critical
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 210
buffer between me and those failures. A system in which these professionals report to the government rather than to participants would remove that buffer entirely.
- HOW THE NDIS IS RUN
My experience with the NDIA has been defined by administrative failure, inconsistency, and a lack of procedural fairness. The NDIA’s own CRM records show that between 2018 and 2024, my primary disability was recorded as ‘intellectual disability’, then changed to ‘major depressive disorder’, then to ‘ankylosing spondylitis’, then to ‘other psychosocial disorders’ — none of which accurately reflected my actual diagnoses of Fibromyalgia and CFS/ME. These errors were made without my knowledge, without my consent, and with profound consequences for my plan and my access.
The Tribunal found that when the NDIA eventually moved to revoke my access, it failed to seek the information it acknowledged it needed, failed to conduct a risk assessment of the impact of that decision on me, and failed to provide me with procedural fairness. The 10-page letter it sent me when commencing the eligibility reassessment contained no information specific to my circumstances. I was not told what evidence was already on file, what evidence was considered insufficient, or why.
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 that was absent in my own case.
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 WHODAS 2.0, CANS, Lawton’s IADL, and FRAT 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 that my Fibromyalgia causes cognitive fog that affects how I answer questions about my own capacity. An algorithm cannot weigh the difference between what I can do on a good day 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. Managing the administrative demands of the NDIS — documenting expenses, tracking budgets, lodging claims — already exceeds my daily capacity on many days. 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.
- CONCLUSION
The NDIS changed my life. When I had access to the right supports — physiotherapy twice weekly, remedial massage, counselling, domestic assistance, and community access — my condition stabilised. I was able to drive short distances. I could walk independently without aid in my home. 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 supports were reduced, I declined. When access was revoked, I was left cooking simple high-carbohydrate meals I could make without assistance. A friend paid for a fortnightly cleaner. My former physiotherapist volunteered two hours of her time to help me batch cook.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 210
These are not the supports of a system working as intended. They are the consequences of a system that failed me.
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.
Veronica Stephan-Miller Victoria May, 2026