Submission 4211 — Name Withheld — NDIS Future Generations Bill

I am a disabled person, clinician, and family member to individuals with disability. I request that my submission remains anonymous.

1. My connection to this issue: I am both a disabled person under the NDIS and an occupational therapist working with people living with disability, many of whom are NDIS participants. I also have two autistic nephews (one of whom was non-verbal), who both received early intervention which helped them significantly.

2. My overall view of this Bill: I ask the government to withdraw the NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026 and to not let it pass. I do not support this Bill.

3. My main concerns about this Bill are the following:

• Increased administrative and compliance requirements: o It is already extremely difficult for people with disabilities to meet the administrative requirements. It is often not in accessible language or formats and is time consuming, financially difficult, energy draining and psychologically damaging to people already struggling with daily life and limited capacity.

• Eligibility / assessment changes: o E.g. having to have tried all treatment options first – some “treatments” will not cure the impairment, some may actually cause further disability, and may increase psychological issues / mental ill health from trauma, side effects, financial burden and literal scars on the body (in the case of surgeries).

• “Not contactable” and participant engagement rules: o Many people with disability already have difficulty accessing means of communication, whether they don’t have access to technology, live remotely or have cognitive, psychological or developmental communication difficulties. If there is a change in circumstances (hospital stay, mental health episode, housing instability, lack of supports, decline in function etc.) it may become harder for participants to be able to be contacted or get in contact. This does NOT mean that they no longer need supports or that they should cease.

• Changes to reassessments and plan reviews: o Changes in circumstances don’t happen in a neat schedule. They can happen overnight. Function can change dramatically overnight. Delays in support, based on how often reassessments & plan reviews can be done, could and likely will, at best, reduce function further & increase reliance on supports (& increase burden on NDIS and other systems), and, at worst, kill people.

• Changes to how funding for supports can be adjusted: o People cannot be fit into boxes. People with the same or similar disability are still individual people with individual circumstances and individual support needs. Therefore, funding decisions should be based on the individual, not on a broad group. Groups and categories of supports and how much funding is needed for them should be based on the individual’s needs and not a generalised average.

• Funding only supports that arise directly from the impairment that meets criteria: o As I previously stated, people do not fit neatly into boxes. Many people, including myself, live with more than one impairment causing disability in various ways. For example, let’s say someone was born without one of their lower legs and also has a diagnosis of schizophrenia – the schizophrenia did not cause the mobility issues from the physical disability/difference, the physical

disability did not cause the hallucinations from the schizophrenia, however both may impact community access, self-esteem and social participation, and combined, the impact may be more significant.

• Reducing funding for social and community participation: o I honestly encourage you to try spending a day using a manual wheelchair and public transport, or try walking around a large shopping centre on crutches and with a trolley. Even Melbourne, for example, a city with much accessible infrastructure, is still not completely accessible and is still extremely hard to navigate. Being able to access the community can be extremely challenging and, in some cases, impossible without NDIS supports. NDIS supports may also help to build the capacity and confidence of individuals to be able to access the community independently on days without support (e.g. for those with anxiety or autism – increasing familiarity and comfort leaving the house). o Many people with disabilities experience social isolation, which can contribute to a lack of informal supports and an increase in mental illness. Supporting social participation may help individuals to build informal support networks and reduce the burden on the mental health system.

• Increased use of administrative or automated systems: o Human review is VITAL. Automative systems will lack nuance and inference. Automative systems will lead to the death of many vulnerable people. Decisions should be made by humans and based on the individual participant they will affect. The humans making these decisions should also have appropriate training in understanding disability and health conditions, to reduce extraneous time wasted going back and forth, and to prevent unnecessary tribunal cases, which have been shown to be the biggest financial drain on the NDIS system. Improve the overall skills and knowledge of the NDIA workers, rather than depriving participants of much needed supports. o For two of many personal examples of incompetence from NDIA/NDIS planners:  There was the time (~ July 2023) when my support coordinator had to repeat herself and literally highlight the repeated information in a following email after the NDIS planner “Mark” did not read the prior email properly (he was also extremely condescending to me, my support coordinator and local area coordinator in a following phone call).  Or the time (30/08/2024) when a planner “Harman” called me to tell me I had to send an email requesting for my plan not to be reviewed, because he had made a clerical error by accidentally pressing the wrong button and he could not undo what he had actioned, from his end, so I (the participant) had to fix his (the planner’s) mistake. (I requested my support coordinator join the call before I agreed to anything and she took record of this).

• Changes in what are considered the responsibility of a parent to a disabled child (under 18): o There would be an increased burden on families which would lead to increased burden on the health system and mental health sector (reduced down time & therefore increased stress for family members), and would impact the workforce by reducing hours those family members could work. Although, in an ideal scenario, carer responsibilities would be shared equally, in reality, carer responsibilities typically fall on female family members. With the burden of care being placed on women, there would be less women working and this would become a gender-based equal rights issue as well as a disability rights issue.

This change also does not take into account single parent households or the fact that parents might have their own disabilities. o Early intervention for children with disabilities would increase their functional capacity and independence, leading to less reliance on the NDIS, if any. Taking away access to early intervention would likely increase the future burden on the NDIS and other government systems.

4. One example from my experience as a clinician:

• An occupational therapy client of mine, a young teenager with significant intellectual disability and autism, who requires 24-hour supervision, received cuts to his NDIS funding. This meant that support hours were reduced and he was no longer able to receive occupational therapy, which was helping him to learn skills such as dressing himself and safety (e.g. with roads & not going into strangers’ homes etc.). The increased burden fell onto his parents who both had to reduce their work hours. His father had to work from home and his mother, a doctor working in emergency, had to reduce her workload. This impacts their broader community in that there is an increased strain on the hospital emergency department, because other doctors have to take on those hours that my client’s mother cannot work. It may also impact the quality of care from the emergency department, because of increased stress and reduced down time impacting on the emergency doctors (including my client’s mother) and their ability to think and respond rapidly and appropriately to emergency patients. The worst case scenario, from my client not receiving NDIS funding, could literally be an increase in mortality in the broader community (& not just the disabled community).

5. Personal impact: The potential loss or reduction of supports from this Bill may affect me (& people I support) because:

• I would not have been able to complete my part time university degree or gain part time employment if I did not have the supports that I received from the NDIS. I would not be able to work at all if I did not have the supports that I currently receive from the NDIS. I would not be able to have a meaningful occupation; I would be more financially reliant on others and the system; I would not be able to contribute back to society; I would not be able to contribute back to the NDIS and I would not be able to facilitate the functional capacity, participation and increased independence of other NDIS participants.

• I could end up homeless: the DSP is not enough to cover the costs of living, therefore I need to be able to work to be able to afford rent, utilities, food, medications, and medical treatments, and I need NDIS supports to be able to maintain function, time and energy available to maintain part-time employment. I cannot live with either of my senior parents due to their own declining function as well as discrimination from (& therefore conflict with) their partners towards me. My parents also live rurally, several hours away from my current location, and moving there would isolate me from friends, support services and health providers, and it would limit my employment opportunities further.

• My mental health would decline, as would the mental health of many other disabled people. The times in my life when my mental health has been at its worst have been when I did not have access to support (when this lack of support impacted not only my ability to participate in society, but even my ability to meet basic needs such as eating and maintaining hygiene), and when my access to support has been at risk and I have had to put every spare moment and dollar into gathering evidence, leaving no time or money for a social life or activities that might bring me joy.

• Many people and I would go without eating due to reliance on others for meal preparation. Many people also can not physically feed themselves and rely on supports to get the food into their bodies.

• Reducing supports and the ability to choose one’s own supports could lead to abuse and neglect. I have had support workers who have been manipulative, who have stolen from me, who have increased the challenges for me to overcome, who have increased the tasks for me to complete (e.g. recently, one support worker unfolded my clothes, that I had already folded to go into my suitcase, just so she could see if they would “make a cute outfit”, and then did not fold them up again), or support workers who have sat on their phone instead of supporting me (one said she was looking at homes to buy), and even one male support worker who made inappropriate advances on me and made me feel unsafe (I reported him to that company). If I did not have the ability to change service providers and choose who supported me, I could be stuck being taken advantage of, or worse. Imagine what could happen to individuals with limited capacity to communicate to report their experience of abuse, and/or to individuals who are completely physically reliant on others and cannot physically escape abuse. We need to be able to choose who comes into our safe space and to choose who might be touching us (e.g. assistance washing, dressing, transferring, etc.)

6. My position on this Bill: My position on this Bill is that I do NOT support it, and I have serious concerns as outlined above. I have barely scratched the surface of ways that this bill will detrimentally impact the lives of disabled people, the people who love, care for &/or rely on them directly, and the broader community, systems and services. Disability is not a club that one is always born into, anyone can become disabled at any time (from serious accidents / injury, medical emergencies, health conditions, ageing etc.). I ask you to consider how you would feel if you or a loved one suddenly, unexpectedly required ongoing support for the rest of your/their lifetime, but accessing support was not accessible or affordable and was not deemed reasonable and necessary by government bureaucracy (possibly not even by a human, but by an algorithm).

7. Final statement I implore the committee reviewing the Bill to consider my lived experience and that of the many other NDIS participants, and to understand how these proposed changes could have a significant, detrimental effect on the lives of people with disability, AND the broader community, AND the future of the NDIS itself. I ask you to withdraw this Bill.