Submission 2306

I am submitting this on behalf of a NDI participant who has written the below submission:

Submission regarding the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Introduction & my lived experience:

I am writing this submission as a severely disabled person who relies on the NDIS for essential daily support and care. I have multiple disabilities and rely on a wheelchair for mobility. The NDIS support I receive allows me to live independently and makes such a significant difference to my life. Without the support I receive my life would be very difficult and perhaps not worth living, I would likely end up in hospital again.

Due to my disability and my limited functional capacity, I require daily support with Activities of Daily Living (ADLS) including meal preparation, shopping, cleaning, laundry, making the bed, maintaining my home, personal care including showering and washing my hair, communication, life administration tasks and medication management. Without support I am unable to complete these activities, which increases my risk of injury, illness and isolation, and greatly increases my suffering. Due to my disability and my limited functional capacity I require support to access the community, and I cannot access the community without a support worker. I require support to go to the shops, medical and administrative appointments, to go for a walk, to participate in any social or recreational activities, to visit friends or family, to access the outdoors and nature or to volunteer. Without support I would be isolated in my home and unable to access medical care.

Prior to receiving the NDI I was living in hospital where I was reminded daily how much I was costing the government per day (more than currently on NDIS). Would I return to live in hospital again if NDIS supports removed or reduced too much? The NDIS means I can live with dignity. I am safe, I am supported and I can eat and live in a clean environment and participate in the community (to a limited extent). I am terrified of what my life would be like without this essential support.

Position on Bill:

I am opposed to the proposed bill as I think it will be deeply harmful to People with Disabilities (PWD), including myself and I am extremely concerned about the impact of decreased supports and a more punitive NDIS system on people who are already suffering every single day. The proposed changes are cause for great concern for PWD. The lack of clarity around who will be affected and why, and which supports will be targeted adds to the distress of this Bill. For me personally, these changes will result in a dramatic decrease in my health and wellbeing and a high risk of me ending up hospitalised or dead. I believe any changes to the NDIS should be made in consultation with the disability community and should be focused on improving the quality of life for PWD, not on saving the government money. There are other areas of government spending that could be reduced, that would not have such a cruel, harmful effect on a community that is already heavily marginalised and disadvantaged compared to able-bodied Australians.

Key concerns (in relation to the first four of the five schedules of the Bill):

Schedule 1:

• I have serious concerns about narrowing the range of allowable supports, redefining what are reasonable supports, redefining permanence and focusing on price rather than quality.

• Alternative supports outside of the NDI such as foundational supports, community support & family support either do not exist or are not available to many PWD. Foundational supports have been severely reduced in the past decade or do not exist at all for specific disabilities. There is an existing lack of community support available and potentially relying on volunteers is not possible due to the nature of disability and care requirements (I would not want a volunteer coming to shower me if that was my only option. I want to feel safe that my support workers are appropriately trained to work with PWD).

Submission 2306

• The pressure on families is already too much with the cost of living, housing and work pressures and demands. Most families don’t have the time, finances or capacity to support their family members living with disability, and many families have more than one family member living with a disability.

• I have serious concerns regarding the reassessment process – I had to prove permanence of my disabilities and that I’d tried every available treatment already and that I had significant functional impairments already – to go through this again will be very traumatic and expensive. If my funding for capacity building supports is cut, how will I pay for the necessary assessments to meet these requirements? Additionally, the assessments I need from the medical system are already not covered by the NDIS and I do not have the money to pay for additional specialist appointments, outside of the already huge expense of managing my disability care needs.

• Any streamlining of criteria for impairment or functionality seem functionally unsuitable for the reality of the diverse experience, presentation and impairments that occur with individual disability. Personal circumstances and environmental factors of each individual disabled participant are relevant to the provision of supports. A generic approach is not useful in this context, and in many situations will be harmful and illogical.

• I have serious concerns about the further narrowing of what NDIS supports are reasonable and necessary. There are already documented inconsistencies and issues with the advice and information provided across the NDIA website vs NDIA staff members, plan management providers, support coordinators, Local Area Coordinators and the media. Incorrectly trained staff are already making harmful and incorrect decisions about the supports that participants need. The expert on what is a reasonable and necessary disability support is always the disabled person, and then their supporting health professionals. If the PWD & their doctors agree that a support is reasonable and necessary, that is a far more accurate judgement of that need than is a government ruling made by somebody without lived experience of disability or medical knowledge of disability.

• More transparency is needed about the existing use of supports (e.g. what percentage of disabled people are using which supports), and the information that the government is drawing on to make these decisions would be ideal (how are you deciding that supports aren’t reasonable? How can that be reflected in the statistics? Or are you only considering the economic argument, with no consideration of the individual human impact of these decisions?). What is the rationale behind limiting people’s access to supports that are helping them reach their NDIS goals, that are helping them have choice and control over their care, and helping them build capacity to be able to participate in their community? How can a government bureaucrat or algorithm have the nuance, scope and compassion to make an accurate determination of what reasonable and necessary is for an individual PWD? It’s deeply offensive and outrageously cruel.

• I have serious concerns about the end of rollover in plans and limiting plan reassessments, as this is unrealistic to the reality of living with disability. Disabilities can change, fluctuate and worsen over time, due to access to medical care, the weather/seasonal changes, availability of medication, other life changes or stressors, pregnancy, illness, crisis, relationship breakdown, natural disaster, age, and many other factors. PWD should not be penalised for having unspent funding, they should be allowed to save funding from when they are doing well, for when they are doing poorly.

• The 90 day no contact suspension change is concerning to me. Many PWD are not able to take phone calls without support workers or support coordinators to assist. There are many reasons why it might be more difficult to contact a PWD - family violence, hospitalisation, changed details, executive functioning or intellectual capacity changes, staff turnovers, illness - there needs to be a longer time frame available for people to make contact, and more effort made to communicate with participants in their preferred communication

Submission 2306

method (why do so so many of us get phone calls when we have said we can only receive communication in writing?)

In relation to reducing supports for people to access the community:

• Accessing the community is something people living without disability take for granted. As someone who cannot physically access the community without a support worker this reduction in supports terrifies me. I am terrified that I will be trapped in my home and unable to access essential care or participate in society in any way.

• A reduction in or removal of my social and community supports would be completely devastating and likely cause significant detriment to my health, safety and wellbeing and most likely result in a further loss of functional capacity. I am deeply afraid that I will end up hospitalised again with increased trauma and suffering.

• I require support to go to the shops, disability related, medical and administrative appointments, to go for a walk, to participate in any social or recreational activities, to visit friends or family, to access the outdoors and nature, to do any of the activities that able-bodied people take for granted.

• Before I was disabled I was an active participant in my community, I studied, worked, volunteered and travelled. My life has shrunk so much through being disabled, the idea that the small amount of community support that I have to enable me to still get out of the house will be taken away is devastating. I know I am one of many PWD in situations like this. It feels as if we are being forgotten and abandoned by our government. It feels as if the government would rather we die, because that would save them money.

• Social isolation is a huge problem for many people living with disability, often we are unable to work, volunteer or study. Often people don’t have partners, children or family or friends. This means that there can be little sense of belonging or purpose in life. The support workers, allied health and medical staff can be the only social interactions one might have. Accessing the community is not a luxury, it is a necessity, to attend a support group, attend a gardening group, access nature, visit family and friends, go to a café, feel part of society, to go get an essential haircut, to attend appointments, these things are vital to life. PWD deserve support to be a part of our communities.

• As a wheelchair user, with a disability that impacts my strength and causes debilitating fatigue, almost all environments are inaccessible to me without a support worker whether I am in a manual or power wheelchair (there are so many steps, lack of ramps and inaccessible doorways, everywhere). Most environments are not designed for power wheelchairs (including most hospitals, the NDIS Ministers Office, doctor’s rooms, radiology clinics, cafes, cinemas, restaurants, shops etc) and the doors are either not wide enough or there is insufficient turning circle to manoeuvre a power wheelchair safely. If I wish to go to the toilet, if the doors are wide enough to access, nearly all toilets have doors that are too heavy for me to open without a support worker. While there are automated toilet doors in some places it is not standard across every building. There are so many physical and structural barriers that prevent me from accessing appointments, services and community spaces. The majority of able-bodied people, including the majority of Members of Parliament have absolutely no idea of the scope of inaccessibility there is in Australian society. Australia is not designed to accommodate PWD, especially PWD with mobility aids. We need daily support in order to engage with society, and even then it is still impossible a lot of the time.

• Greater social isolation could lead to further burden on other services, with an increasing demand on hospitals, mental health services, Medicare and Centrelink. This is not saving the government money, this is shifting money around. There is not money to be saved by making PWD suffer more and require greater medical care.

• Reducing social and community participation funding won’t leave participants with many actual support hours. In line with the NDIS price guide, providers can and do charge for kilometres travelled with the participant and in some circumstances, for kilometres and time

Submission 2306

of travel to and from the shift. An appointment 15 kilometres from a participants home means 30 kms travelled in that shift and 30 minutes less in their social and community participation budget. Does the NDIS consider this when allocating funds or deciding social and community participation budgets? Many PWD can’t take a taxi or public transport and while we wish we could access required services closer to home, they usually aren’t available locally.

• Currently I use nearly all my weekly social and community participation to be supported to prepare for and go to and from mainstream disability related medical appointments that I could not get to without this support. Reduced funding would mean that I could not access these essential disability related appointments which would result in worsening of my health, decreased functional capacity, worsening of my impairments and risks to my safety. I would need an increase of my ADL supports due to reduced functionality, and more reliance on mainstream medical system including hospitalisation and more intensive health interventions.

Schedule 2:

• I am concerned that the requirement for registration will unnecessarily burden sole traders and small independent providers, who focus on working with a small amount of participants in niche disabled communities in a disability-friendly, neurodiversity-affirming or queer-friendly way. The majority of the larger disability service providers do not offer trauma-informed, lived-experience led, neurodiverisity-affirming & queer-friendly care. This makes these larger, generic disability providers harmful or unsuitable for many PWD. I agree that reducing fraud and low quality service is important, however the majority of the examples of this happening have been from large providers offering SIL, respite or day activities.
  

Independent providers are almost always offering a tailored and nuanced service to particular participants and they do not make enough money to be able to afford an expensive registration and auditing process.

• Many PWD also work in this sector as they have valuable lived experience perspectives to share and the flexible hours and work environments are well suited to employment for PWD (e.g. working in an accessible home as a wheelchair user). People like this, working part time hours do not have the money available for the expensive registration process.

• I have serious concerns about the mandatory registration and whether there will be appropriate cost friendly categories for registration for Independent Support Workers. From my lived experience the worst experiences have been with the bigger registered providers.
  

The bigger registered providers have abandoned my care, not understood my disability, overstepped professional boundaries, sent inappropriate support workers that cannot communicate and some have even committed fraud.

• Independent support workers are essential to supporting PWD. Please do not take away all our choice and control – it leads to better use of funding and more appropriate supports and less waste of funding too when individual PWD are able to choose the most relevant and helpful services for their specific needs. Independent supports can be better value for money and make funding go further as they often don’t charge the maximum rate or travel costs like nearly all big providers do.

• I have serious concerns regarding the ministerial powers and that these are too much power for someone to make those decisions for funding cuts and broad changes without consulting the disability community and ensuring there are alternative supports in place.	Legislative change to ministerial powers makes it even easier for the government to further erode and reduce a system that was having such an immense, material benefit on the daily lives of PWD. I am scared for the future, where my support may be taken away and I will be left with no options or hope to continue living.
  

• I have serious concerns about the reduced options for plan managers – my plan manager is doing a great job and they don’t cost very much at all. Why change something that works
  

Submission 2306

well? Why penalise small, independent providers offering niche and bespoke services? Why reduce the opportunities for small business owners to work in the sector?

Schedule 3:

• Enforcing pricing rules that mean supports are not fully covered by NDIS funding will have a disproportionate affect on people with disability. Many PWD do not work and rely on DSP which is below the poverty line – they simply can’t afford the cost of care. Already I spend the majority of my income on disability related expenses, I have minimal money left over to live my life or have any of the comforts or joys that able-bodied people take for granted.

• The use of Automated or AI decision making is horrifying. Remember Robodebt? It is unreasonable to be taking such shortcuts with funding that impacts individual people’s daily lives. Inhumane decisions being made by algorithms are dangerous and unjust. The Automated aged care trial has been ineffective with assessed support needs being undercut, clinical discretion removed and transparency reduced. This has resulted in older people receiving less care and suffering consequences to their health and wellbeing. Aged care, like disability, is highly individual and changes quickly so a rigid, automated system misses the reality of the daily experience of suffering. People’s health and safety depend on nuance, relying on automation is dangerous.

Schedule 4:

• There is significant risk that automated assessments will not capture the needs of individuals accurately. No two people with the same disability are alike, some might have quite severe functional impairments in some areas while others may be significant or moderate in those areas. Assessments of disability should only be undertaken by skilled, tained medical professionals with the expertise of the particular disabilities being assessed. It is unsafe and unreasonable for these assessments to be undertaken by non- medical staff with expertise. It is unsafe and unreasonable and unethical for these assessments to be undertaken by AI or automation.

• I have serious concerns of reduced funding and plan changes, one thing I think is severely under-appreciated is how long it can take to do ADLs and other tasks as someone living with disability. To have a shower may take someone without disability 5-10 minutes but for a PWD it may take 30-60 minutes, or for someone requiring a hoist or 2-1 support even longer. Getting into the car may take someone without disability 30 seconds but for a PWD it may take 5-10 minutes, all these extra minutes add up so in a 2 hour shift you can get surprisingly little done. Even my supports are only adequate to cover basic ADLS and showers are a luxury not an everyday occurrence. An algorithm or a formula or standard measure is unrealistic to address the diverse needs of the disabled population accessing the NDIS (remembering that the majority of PWD do not even access the NDIS - the government already neglects to provide support and services for the majority of the PWD in Australia.)

Other concerns (relating to process or implementation):

• I have serious concerns about the reduction of Support Coordination and the changes with that. SCs are very important particularly to participants with no family or informal supports. They can also assist to keep things in check, plan spending and can monitor for fraud and keep providers honest.

• I feel the information regarding the changes and bill are not clear and have left people feeling very vulnerable, confused and anxious regarding their futures. The uncertainty and way that the changes and bill have been announced and the language used has made me feel like a burden and that my life as a PWD has no value. As a result, I have required greater support from the health system and have required more medical and health support in addition to the disability support

• Due to the way the NDIS is spoken about by politicians and the media as a participant I feel I have a target on my back when I go into the community and my mere existence is an offence and burden to the Australian taxpayer. Why do we make people PWD on the NDIS

Submission 2306

feel like this? I already feel invisible, and a burden on society. I didn’t ask to be disabled, this happened to me.

• There is insufficient time to go over the bill to clearly answer and give a submission. Many PWD and their supporters have not had the time to engage with the Bill and make a submission in such a short time frame.

• Larger impact on PWD engagement with employment, medical services and welfare services. Reducing supports for PWD means that some PWD will not be able to maintain their employment. Loss of employment will result in either more demand on the welfare system (DSP) and increased demand on Housing Trust services or homelessness services as well as increased demand on health services

What I believe this Bill gets wrong:

• Portrayal of PWD as a burden and drain on the Australian economy by politicians and in the media, as if our lives are worth nothing is cruel and offensive. It is damaging to the mental health of PWD and destroys any sense of self-worth. The media coverage and inappropriate comments by politicians have made it feel having everyday needs met is a luxury and completely unnecessary for people living with disability. Why is it unreasonable and a waste of taxpayers money for a support worker to assist a participant to go outside for a walk or to enjoy a coffee at a café? The NDIS is not paying for the coffee, they are paying for the support. The way that Mark Butler has spoken about PWD and what they are using the NDIS for is incorrect, ignorant, and unreasonably contributes to ableist attitudes in Australia that lead to discrimination and abuse. The talking points used seem to be specifically chosen to belittle and dehumanise PWD and turn the average Australian against a marginalised, minority group in society, that already struggles and suffers so greatly.

• How would politicians feel in having a reduction in their allowances that enable them to dine, drink alcohol and fly first class. Why is it reasonable and necessary for our politicians to fly first class and stay at expensive hotels? Why is that not scrutinised and checked that it is value for money? We are not asking for or receiving luxuries, we receive support to get the most basic of needs met and to live a life that allows us to access and participate in the community. Politicians get paid several hundred thousand dollars every year, whilst PWD on the DSP get no more $30,000 a year. PWD are not ‘rorting the system’, we are struggling to afford the most basic care and access to basic needs. The NDIS is a real, and documented lifeline for people who would otherwise receive no support at all. Often PWD spend so much money on medical bills (Medicare does not cover all the cost of all the specialists we need to see) and on medications (some of which are not covered by PBS), than we do not have money left over to pay to heat our houses or buy food, let alone pay for support like cleaning or support workers or allied health care.

• Lack of engagement and consultation with the PWD community in drafting the Bill.

• Focusing on the wrong areas of inefficiency in the system - why isn’t the high cost of NDIA executive salaries being scrutinised, or the inefficiencies in how the customer service and administration being done, or the number of mistakes that have been made to peoples plans that have caused harm, or the cost of outsourcing services to low quality, poorly trained providers.

The Bill in its current form is harmful and unethical and should not be passed by Parliament. I ask the committee to consider my lived experience when reviewing this Bill. I ask the committee to consider what kind of society they want to live in - one that supports the marginalised, vulnerable and minority members of our community, or one that supports cruel and inhumane policies being used to cause unnecessary harm.