Submission 3080 — Name Withheld — NDIS Future Generations Bill | External submission

NDIS submission addressing concerns for the ‘Future Generations’ Bill.

I make the following submission as a strong, determined, articulate, disabled woman, NDIS participant and highly experienced Allied Health Professional. I have lived experience of having a disability and navigating the NDIS, as well as professional experience in supporting children and families to navigate the NDIS.

I, like many others, have grave concerns about the impact that the proposed changes outlined in the Future Generations Bill will have on the disabled community. Whilst I understand the intention of proposed changes to support the ongoing sustainability of the NDIS, and agree that in it’s current form, no, the NDIS is not sustainable, ripping supports out from underneath the disabled community is detrimental and will cause serious harm. I ﬁnd it ironic that the timing of proposed ‘robo’ style cuts to therapy and community participation have aligned to the actual Robodept class action, where the Federal Court approved a record-breaking $548.5 million settlement to compensate victims of the government’s unlawful Robodebt scheme, many of whom are the exact disabled community who will be impacted again. I am one of these people and the experience has been traumatic.

I am making my submission to address the following proposals:

Expand the National Disability Insurance Agency’s powers to identify, investigate and respond to fraud and non-compliance and to ensure the integrity of the NDIS

This proposal hits especially hard for me personally. In March, I was contacted by an NDIS delegate whom I had never spoken to and was accused of “gross mismanagement” of my NDIS funding, with “repeated misspending” and told I was “proven to be unable to follow the rules”. I felt belittled, humiliated, spoken down to, lectured, and treated like a criminal. I was not given any opportunity to explain or provide additional evidence in response to these accusations. When I attempted to explain, ask questions, or clarify information, I was cut oX, dismissed, and given vague responses that provided no clarity.

Here are speciﬁc items that were deemed ‘misspending’ of my NDIS funding.

Both of these items signiﬁcantly increase my everyday independence by helping mitigate barriers that I face due to my physical disability.

I have no issue with questions being asked when a support is ﬂagged as ‘unusual’ or ‘potentially non-compliant’, but without consultation, it’s just that; a potential, not hard evidence of intentional misspending, like I have been accused of in such a traumatic manner.

Introduce plan end dates and renewal processes and limit unscheduled plan reassessments

This could be a possibility if adequate measures were also ensured to collaborate with participants about funding decisions. For example, I have needed to request a review of the decision made following the allegations listed above. My new plan was issued with zero collaboration with me. I was given a four year plan that includes supports that do not meet my needs and does not meet my preferences. The nature of having a complex disability is often unpredictable. Circumstances change following events that would seem insigniﬁcant for the typical person; this might include a fall that leaves us hospitalised, an infection that doesn’t heal without intensive intervention, the loss of an ‘informal support’ due to death or even a breakdown of a relationship. Removing the access to unscheduled plan reassessments is an ableist approach that will not work for the disabled community.

Clarify the requirement for support needs to be directly related to a participant’s eligible impairments and deﬁne ‘functional capacity’

The nature of the NDIS was designed to support the disabled community who present with signiﬁcant and permanent support needs. Very often, the nature of having a signiﬁcant disability comes along with complexity of co-occurring or correlated additional needs and challenges. Disabled people like myself come as a ‘whole package’. I am ‘approved’ for my mobility needs resulting from a viral acquired brain injury that I experienced as a teenager. I too, am a three-time cancer survivor; I have evidence of organ damage from my treatment history, I am at greater risk of developing further conditions such as osteoporosis, I had a double mastectomy in 2019, I suXer from endometriosis that cant be managed due to cancer risks, and I have been diagnosed with ADHD and Autism. All of these factors contribute to my ‘functional capacity’ to participate in activities, and I cannot simply ‘remove’ a factor due to interfering with my eligible mobility impairment. In fact, it is my mobility impairment that gets in the way of me being able to manage my other needs and symptoms e.g. I am unable to ‘just write it down’ to help me remember things (due to my impaired motor skills), without speciﬁc planning and access to technology, which involves the planning and organisation that my ADHD impairs. Also, if I am to develop osteoporosis it will have a signiﬁcant impact on the functional capacity of my mobility and therefore require

diXerent supports than I currently receive. I argue that functional capacity is determined from viewing the whole picture, not just single elements that tick boxes.

Enable the Minister to reduce funding for speciﬁed groups of supports

I grew up as a typical child. I had an absolute passion for ballet, dance, musical theatre and performing. When things were tough in my life, I was able to use this passion to redirect my emotions and deal with challenges. This was brutally ripped away from me around my 16th birthday. Not only was I facing the biggest and scariest hurdle of my life (sickness which has resulted in my ABI, hospitalisation, loss of basic human functions, then cancer 15 months later), I had lost my very activity that deﬁned me and allowed me to cope with such adversity which led to very dark thoughts and isolation.

I discovered horses seven years after I lost my ability to dance. Although it took time, it provided me with new purpose and has led to me being able to see myself with a new identity. I am able to direct my emotions and deal with challenges with my new sport, in the same way that I was able to when I was a dancer.

Proposed cuts to community participation place this in jeopardy for me. I rely on a skilled independent support worker that I have hand selected to assist me to attend and participate in equestrian clubs, competitions and social equestrian play events safely. I also require occasional support to care for my horse e.g. when he requires medication. Of course, I self-fund all aspects and responsibilities of owning my horse such as vet and medication costs in this example, however I am unable to physically administer some medications due to my mobility impairment.

With ‘robo’ style cuts, I would be unable to participate in these activities which bring hope, pleasure and purpose to my life. I have experienced dancing being brutally torn from me and would not cope if horse riding were to be torn from me as well.

I also have grave concerns that cuts to funding will cause to the physical safety of NDIS participants. My concerns are not hypothetical or a potential; they are my lived experience. Following cuts to my plan, I needed to ask my ex-partner for support to do a gardening task as a mater of urgency as the council were threatening to issue a ﬁne. This request and urgency didn’t land well with my ex-partner, and contributed to a domestic violence incident where I needed to call the police. Luckily I was not physically harmed during this incident. Reduced funding will increase exposure and vulnerability to domestic and family violence. Disabled people are already at signiﬁcantly higher risk than the general population and this risk will only increase with more reliance on ‘informal supports’ to complete essential daily tasks. Disabled people already feel like a burden and shouldn’t be forced to beg for help. People who provide informal supports do so as a generous gesture for someone they care about. Their generosity is not obligated charity. Their ability to say “no”, morally, when they know this means support will not be provided, is being weaponised and taken advantage of by the NDIS.

Following my funding cuts, and this domestic violence incident, I was forced to attempt a task that was beyond my capability to perform independently. This resulted in me physically injuring myself and left me with a black eye for two weeks.

I am incredibly fortunate that I was not harmed more seriously. I fear many NDIS participants will be though.

Solution ideas

Clearer communication from NDIS. Prior to October 2025, there has been very minimal overall guidance of what is, and is not allowed to be purchased using NDIS funding. When I asked the delegate who contacted me what I was allowed to purchase with my reduced consumable budget, they responded “things from a disability shop”. Providing clearer and more consistent timelines would support information sharing and reporting. Reports are being written prior to scheduled plan reviews but then plans are rolled over. There is inconsistent and unclear guidance about sharing reports and documentation. There are also major inconsistencies with NDIS processes and communication seems to depend on who you speak to on the day.
Increase skill and knowledge of those making decisions within NDIS. As an Allied Health Professional, I see poorly worded participant goals and references to out of date therapy supports written into plans. I also have experienced rebuttals to clinically justiﬁed supports that are ill-informed and contradict evidence based practice.
Reduce ‘scare mongering’ tactics, such as ‘use it or lose it’. Participants wouldn’t need to request and justify every single support option every single year if they felt conﬁdent that supports were able to be easily added into a future plan if their needs and priorities shifted year to year e.g. focusing on OT and physio this year and having a break from speech.
Increase collaboration with the disabled community and believe what they have to say about their own lives. Cut reliance of expensive reports such as FCA’s which are only valid for 12 months. A large portion of such reports is self reported data.
Let participants guide what supports work best for them. Support workers assist many participants when environments are not set up in an accessible manner. I

personally would much rather utilise more AT to support my independence than rely on support workers. I know of where AT has been purchased, but the support worker is still utilised as the person using the AT, making the AT redundant.

Prioritise proactive behavioural strategies instead of behaviour modiﬁcation delivered by many registered but underqualiﬁed Behavioural Support Practitioners who simply echo speech and OT recommendations.
Replacement supports were a step in the right direction, however in some cases are largely inappropriate. Currently, the replacement supports process is essentially having participants ‘choose’ if they want to communicate via AT, or shower with assistance from a support worker as an example. Both are fundamental human rights and not appropriate to choose between.