NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026 —
Submission
By: Coastal Regional NSW
Executive Summary
Introduction
I am making this submission because the proposed NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026 does not work for me and will significantly reduce my ability to live safely, independently, and with dignity. I have a dual sensory disability, multiple physical conditions, and I live alone in a beautiful coastal regional area with unfortunately with limited to no services. I have no spouse or children. I cannot rely on siblings who are scattered throughout Australia. The Bill strengthens NDIA discretion while failing to address the systemic issues that already prevent me from accessing essential supports.
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My disabilities are progressive, unpredictable, and affects every aspect of my daily life. I rely on assistive technology, support workers, and safe access to the community to manage basic tasks, attend medical appointments, and maintain independence. Any reduction in supports or tightening of eligibility will place me at serious risk of harm.
This submission outlines my lived experience, the functional impacts of my disabilities, the gaps in mainstream services, and the specific sections of the Bill that do not work for me.
Lived Experience — Dual Sensory Disability
I have a dual sensory disability: Severe vision impairment (legally blind in the right eye, low vision in the left, PRPH2 retinal disease) and moderate to profound bilateral sensorineural hearing loss (progressive, permanent) These two conditions together create significantly greater disability than either one alone. I cannot rely on vision for safety, and I cannot rely on hearing for
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safety. This combined impact affects communication, mobility, environmental awareness, and independence.
I also have multiple physical and medical conditions that affect my mobility, balance, pain levels, stamina, and ability to perform daily tasks safely.
Vision Loss — PRPH2 Retinal Disease
My ophthalmology specialists have diagnosed me with PRPH2 related inherited retinal disease, a progressive genetic condition that causes degeneration of the photoreceptors and macula. This disease leads to permanent and worsening vision loss, including blind spots, distortion, poor contrast, difficulty with colour and depth perception, and severe problems in both bright and dim lighting.
PRPH2 disease has: no cure, no approved treatment, no clinical trials available for my mutation
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Management focuses entirely on adaptation, low vision strategies, and safety support.
What I See
Permanent grey fog in my left eye, no functional vision in my right eye, objects appear and disappear; straight lines look wavy; blind spot in the centre of my vision; Poor contrast, steps, curbs, edges blend together; Poor depth perception; difficulty with colours, flashes of light that temporarily blind me; glare sensitivity Bright light makes my eyes watery, further reducing visibility but need bright indoor lighting to function. I have night blindness and double vision when tired
How This Affects Daily Life
I experience significant difficulty with; Seeing people approaching from the right; Detecting obstacles until they are directly in front of me. Tripping and falling due to unseen hazards. Seeing steps, curbs, level changes. Finding items that blend into surfaces. Finding pills if dropped. Seeing glass doors, 4 – 2 July 2026
walls, entrances. Seeing elevator buttons. Navigating escalators. Reading signage or building directories. Seeing and completing forms at medical centres. Seeing power points without an industrial torch. Seeing dirt, spills, or mess on surfaces. Grooming tasks are difficulty. Tying shoes; putting on jewellery; finding clothes in my wardrobe and, distinguishing colour; seeing subtitles on TV. Driving (I cannot drive). Managing lighting changes; using my computer, must sit extremely close, causing pain and fatigue (this submission took 5 days to complete due to sight). Using my mobile phone outdoors; glare washes out the screen. Seeing water running from a tap increase of overflow (can’t hear water). Using kitchen knifes; I cut myself on sharp edges and I often cut or grate my fingers despite food prep training.
Safety Risks From Vision Loss: Falling over obstacles Missing steps or curbs Running into branches or overhead objects Missing vehicles when crossing roads 5 – 2 July 2026
Burns and cuts when cooking Getting lost in unfamiliar places Leaving water running because I cannot see it Incorrectly inserting plugs into sockets Being unable to use my phone in bright light Glasses fogging due to thyroid temperature instability Inability to safely change light bulbs and do other household tasks that others take for granted Inability to safely perform gardening tasks Risk of injury from unseen outdoor hazards Falling from ladders (this has already happened, causing pelvic injury) due to electrician support being cancelled by the NDIS new rules.
Hearing Impairment — Specialist Summary
My audiology reports confirm moderate to profound bilateral sensorineural hearing loss. Without hearing aids, I scored 0% on speech discrimination tests. I cannot understand spoken words at all. 6 – 2 July 2026
Even with hearing aids, I struggle with: Speech in background noise; Accents; Children; Certain tones; Conversations in the car; TV; staff in shopping centres; Receptionists; Announcements; People calling my name; Instructions at train stations or bus stops; Hearing cars or environmental warnings. My hearing loss is progressive and will continue to deteriorate.
Real World Impacts of Hearing Loss
Constantly needing repetition or Support Worker clarifying what has been said by others; communication breakdowns; Social exclusion; inability to hear people when out and about; inability to sometimes hear conversations in cars; inability to hear environmental warnings; weather noise interference (wind, rain) and difficulty hearing instructions in shops or medical centres.
Listening Effort
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Because I cannot rely on vision, I rely heavily on hearing but my hearing is impaired. This causes: exhaustion; headaches; difficulty concentrating; social withdrawal.
Combined Impact — Dual Sensory Disability
Vision loss + hearing loss together create much greater disability than either one alone. Combined effects: cannot lip read; cannot rely on hearing for safety; cannot rely on vision for safety; cannot navigate unfamiliar environments; cannot follow instructions reliably; fatigue quickly; high risk of falls; accidents and, miscommunication. This is why I need support workers to help me safely access the community, appointments, and daily tasks. This is an area the new bill wishes to cut back on. This would have a devastating impact for me. Could I be one of thousands to be kicked off?
I have been told by an NDIS lawyer during a Tribunal review that the NDIS “does not have to assess my disability as a dual sensory disability” and that it 8 – 2 July 2026
can assess my hearing loss and my blindness separately. This is incorrect. These impairments do not exist in isolation, they interact every moment of every day and create a combined functional impact that is significantly greater than either disability alone. Many people with a disability also have additional medical conditions that compound their functional limitations. The new assessment model must be holistic and must recognise combined impairments, not force people into a one size fits all framework that does not reflect real world disability.
Coastal Regional Disability — Why My Region Matters
Coastal regional disability is not the same as disability in the NT desert or in metropolitan cities. My region has: no disability transport; no dual sensory services; no low vision services; no hearing services; no door to door or supported community transport; no Ubers (except Easter and Christmas, and drivers do not provide support at appointments); no train station nearby; no ferries; poor bus services (they do not provide door to door support or attend
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appointments); limited medical access; seasonal workforce shortages and coastal hazards such as wind, debris, sand, and slippery surfaces.
This is the reality of coastal regional disability. It is not comparable to metropolitan areas with multiple services, nor to remote desert regions with different infrastructure and support models. Any national reform must recognise these differences and ensure that people in coastal regional areas are not left behind. The Bill assumes all regions have equal access. They do not.
Plan Manager / Planner Misinformation (correct placement) NDIS Plan Assessment Officers do not understand the area I live in, and they deny supports based on incorrect assumptions. I have repeatedly been told that certain supports “exist in my area” because a planner read it on an information sheet or googles. These supports did not exist. I had to do the work myself, ringing around, collecting names and phone numbers, and proving to the NDIA that the services were not available. Instead of accepting 10 – 2 July 2026
their mistake, I was told to apply for a plan review. The new Bill will limit reviews.
Daily Lived Experience — Why Rigid Assessments Will Fail Me
Real world examples: I fell face down into water at a Canberra sculpture because I could not see the step down. I injured my pelvis falling from a ladder after NDIS removed electrician support as part of new rules. I have cut and burned myself in the kitchen due to poor visibility. • I have been stopped by support workers, family and Guide Dogs mobility instructor from walking out to moving vehicles because I cannot see or hear them. I cannot see steps, dips, gutters, or speed humps. I cannot hear announcements or instructions. I cannot navigate unfamiliar environments safely. Rigid assessment tools cannot measure this. Dual sensory disability requires holistic assessment, not checkboxes. There is a growing NDIA practice where participants are told they must “lose a support to gain a support.” This practice is happening in planning meetings, internal and external reviews. The Bill will make this practice worse by tightening reasonable and necessary criteria and increasing 11 – 2 July 2026
NDIA discretion. For someone with dual sensory disability, this is dangerous. My supports do not overlap; they address different impairments (vision, hearing, mobility, thyroid, endocrine; Osteoporosis knee issues, and safety). Losing one support to gain another would leave me unsafe, unable to access medical care, and unable to live independently. Disability needs do not “trade off.” This practice must be explicitly prohibited.
Direct Links to the Bill — Why These Provisions Harm Me
Assessment Tools (Bill: Assessment Framework)
Standardised tools cannot measure in my sigiht: grey fog; floating objects; wavy lines; blind spots; contrast loss; lighting instability and dual sensory interaction. Rigid formats will miss assess me and remove supports.
NDIA Discretion (Bill: Decision Making Powers)
NDIA already denies supports using: “mainstream”; “not value for money”; and “not reasonable and necessary”. This Bill strengthens those powers.
Reasonable and Necessary (Bill: Tightened Criteria)
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This will make it easier to deny: AI hearing aids; AI glasses; specialised scripted glasses; Braille supports; mobility training; support worker attendance; transport; and daily living supports
Foundational Supports (Bill: Shift to States)
Foundational supports do not exist in coastal regional NSW. Mainstream Interface (Bill: Use Mainstream First). Mainstream services do not exist in my region.
Review Rights (Bill: Reduced Flexibility)
My condition is progressive and unpredictable. I need review rights to adjust supports as my vision and hearing changes.
NDIA Pricing Guidelines and Registered Providers
The NDIA sets maximum price caps. Registered providers charge the maximum price. The NDIA then denies supports as “not value for money.” 13 – 2 July 2026
Examples: My cleaner charges the maximum NDIS rate because NDIA caps become the “market rate.” My cleaner originally charged $116.06 for a standard clean and was satisfied with this amount. Two weeks ago, after reviewing the NDIS Pricing Arrangements and Price Limits, they realised they were allowed to add labour travel costs and between client travel costs on top of the $116.06. Because they are a registered provider, they must follow the NDIS pricing rules, and the rules encouraged them to increase charges two weeks ago I was charged $175.08, this week it has gone up again to $180.25. This shows a major flaw in preference for Registered Provider under the NDIS Pricing Arrangements: the NDIA sets maximum prices; registered providers follow those prices; then the NDIA tells participants the support is “not value for money”.
The NDIA creates the pricing problem, and participants are blamed for it. The Bill strengthens NDIA discretion and tightens reasonable and necessary criteria, which will make this contradiction even worse. I have found most
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unregistered providers cheaper in my area. The new bill wants more providers to be registered increasing costs for NDIS and particpats.
The Bill reinforces NDIA control over pricing without fixing the problem. The Bill pushes DSP participants into substandard government programs If you are a NDIS participant on the Disability Support Pension (DSP), the NDIA forces you into government funded programs such as the Hearing Services Program (HSP). This creates inequality. For example, to purchase premium AI hearing aids suitable for my hearing loss — such as Starkey AI hearing aids, the cost is around $18,000. The government HSP will fund approximately $1,800. This means I cannot fix my hearing problem as I cannot afford the gap
Other NDIS participants who are not on the DSP can receive full funding and through a hearing place the full cost reduces to $10,000. DSP recipients (means tested for poverty) cannot. 15 – 2 July 2026
This means the poorest Australians get the least support, the people with the least money pay the most and the Bill strengthens this type of inequality by pushing people to HSP or other programs.
Dementia Risk — Why this inequality is dangerous My hearing loss is not being addressed properly under the current NDIS system and the Bill does nothing to fix this, even though it directly relates to my disability. Untreated or poorly treated hearing loss is one of the largest modifiable risk factors for dementia, according to the Lancet Commission and multiple follow up studies that “Encourage use of hearing aids for hearing loss”
- https://pmc.ncbi.nlm.nih.gov/articles/PMC7392084/. I have moderate–profound bilateral sensorineural hearing loss with 0% speech discrimination without hearing aids. When my hearing supports are delayed, denied, or downgraded, it directly increases my cognitive load, fatigue, isolation and puts me at real long term dementia risk.
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The Bill tightens reasonable and necessary criteria and increases NDIA discretion, making it even harder to access the advanced hearing technology I need. Hearing supports are not optional they are essential early intervention dementia prevention.
NDIA Lawyers Wearing Two Hats — Why Review Rights Matter
While challenging NDIA decisions, I discovered: The same NDIA lawyer represents the NDIA and appears in Tribunal processes. This means the NDIA lawyer defends NDIA decisions and the NDIA lawyer also represents the Tribunal environment. The participant faces a government lawyer with two roles. The process does not feel independent or fair. The Bill reduces review rights and increases NDIA discretion. This is dangerous.
Myth Busting — I Have Not Had a Holiday Since 2012 I have not had a holiday since 2012. 90% of my supports are essential shopping or medical. I do not use my funding for leisure, I use it to survive. 17 – 2 July 2026
Yet a politician recently had a taxpayer funded family holiday to the snow. Meanwhile, I cannot visit my own siblings because I have no transport, no support workers, and no funding. The myth of NDIS holidays and concerts is being used to justify harmful reforms. The only people who access these activities are doing so through other disability programs or private means. This luxury has never been available to me.
If I were to receive support to attend a show in Sydney, I would have to pay for the support worker’s accommodation and their ticket, depending on the venue’s policy. NDIA may assist with transport and the support worker’s presence at the venue, but I cannot afford to pay for someone else’s accommodation and ticket. I also believe it is important for young people with a disability to socialise. The Lancet Commission and multiple follow up studies show that social engagement also reduces dementia risk. 18 – 2 July 2026
I will occasionally have lunch after a medical appointment, but this is because I am starving and the appointments finish around lunchtime, not because I am “out socialising.”
Safety Risks — Why I Cannot Lose Supports (which the NDIA Bill wants to reduce) Without support workers, I face: falls; traffic hazards, such as not seeing or hearing a vehicle approaching; environmental hazards; inability to navigate buildings; inability to shop for essentials and inability to attend medical appointments which makes up the majority of my support.
These are not “fears of change.” These are real, daily safety risks that place my life and wellbeing in danger. The Bill proposes reducing supports and tightening criteria, but for people with dual sensory disability, losing supports is not an inconvenience, it is unsafe. Without support I will be totally isolated in my home. 19 – 2 July 2026
Recommendations
Recognise dual sensory disability as a combined impairment, not two separate disabilities. Use holistic assessments, not rigid formats or analogue/AI driven non human “expert” assessors. Do not increase NDIA discretion, it is already too broad and inconsistently applied. Protect review rights and ensure participants can challenge incorrect decisions. Do not replace NDIS supports with foundational supports that are inadequate or unsafe. Do not rely on mainstream services that do not exist in regional and rural areas. Fund assistive technology properly, including AI hearing aids and AI vision technology, don’t mark as “mainstream”, if it directly relates to a disability it should be funded. 20 – 2 July 2026
Fix pricing inconsistencies created by NDIA price caps and provider rules. Address HSP vs DSP inequality, the poorest Australians should not receive the least support and similar programs. Extend consultation time, the Bill is too significant to rush. Remove the ridiculous requirement that to gain a support, a participant must “drop” another support. This is unsafe and has no clinical basis.
Combine Plan Managers, Local Area Coordinators and Support
Coordinators into one role to reduce administrative NDIS costs and duplication saving money. Reduce NDIA spending on legal disputes. The NDIA spends enormous amounts fighting people with a disability in Tribunal hearings and courts. If this Bill passes, these cases will increase, not decrease, wasting NDIS funding.
Swedish Model + Government Revenue
Australia should look at the Swedish government disability program model, which uses one flexible disability budget instead of splitting supports into rigid 21 – 2 July 2026
categories. Participants receive a single allocation and can use it for the supports they actually need.
The Bill attempts to add new layers to a system that has not worked correctly from the start. The NDIS Act is so complex that even NDIA staff are often unaware of the policies associated with it. This Bill will add to an already confusing and inconsistent framework that is open to interpretation, and those interpretations will differ significantly between people with disabilites and NDIA staff.
Australia has multiple revenue streams that could support a fair and functional disability system. Billions are allocated to projects such as nuclear submarines, estimated at more than $368 billion over the life of the program while disability supports are being tightened and restricted.
The government collects billions each year from tobacco excise (over $17 billion), alcohol excise (over $7 billion), and GST revenue. Additional revenue 22 – 2 July 2026
could have been generated from major infrastructure such as tunnels and transport assets if they had not been privatised. These are significant, ongoing revenue sources that far exceed the cost of providing safe, essential disability supports.
At the same time, politicians receive government funded travel, accommodation, and holiday allowances. Yes they work hard but people with disabilities have to beg for supports, are told to “reduce supports,” “trade off supports,” or “use mainstream services” that do not exist. The contrast is stark: Australia can fund nuclear submarines, defence procurement, and political travel, yet people with disabilities are being asked to give up essential supports, or threatened with losing NDIS access entirely under the Bill. Disability is not a luxury item. It is a core social responsibility.
The Swedish model avoids the Australian problem where people must “lose a support to gain a support,” or where essential supports are denied because they fall into the wrong NDIS category. Australia should consider adopting a 23 – 2 July 2026
similar flexible budget approach instead of tightening criteria and increasing NDIA discretion.
Acknowledging Parliamentary Support & National Inclusion
I am pleased that the Australian Greens are working hard to question this Bill and to stand up for people with disabilities like myself. Their advocacy has given many of us hope. However, I am deeply disappointed that others within the Senate, including Labor, the Coalition, One Nation and several Independents, have not spoken up for people with a disability. It is disheartening to see that the voices and safety of people with disability appear to matter so little in the national debate. We should begin by acknowledging that this Bill is not the way forward. Australia must show, through action that people with disability are valued members of our community.
One way to demonstrate genuine national inclusion would be to refuse this bill, breath take time to look at other overseas models. 24 – 2 July 2026
Another way to demonstrate solidarity, the next Olympic Games held in Australia: people with disability should be honoured at the opening ceremony, coming out alongside able bodied Olympians. There should be a disability basketball game followed by an able bodied basketball game etc, shown and televised together or disability events televised first for a change, instead of being pushed to the back. This would send a clear message of national respect and inclusion. Disability is not a burden it is part of our national identity, and people with disabilities deserve to be heard, recognised, supported, and celebrated.
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