Submission 940
SUBMISSION TO THE SENATE ENQUIRY on the National Disability Insurance
Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
INTRODUCTION:
I am the single mother of three now-adult children with autism. All of my children are NDIS participants. My youngest, who is now 20 years old, has level 3 autism, severe intellectual disability and highly complex behavioural needs. He is now in Supported Independent Living (SIL) in Specialist Disability Accommodation (SDA) (robust).
I was full-time unpaid carer in the period between 2000 and 2022. I am still an unpaid carer for my middle child, who is 21. My caring role is now a part-time responsibility, as I am no longer providing live-in care to my youngest, who has the highest level of need.
I have been in carer burnout for at least 6 years (in reality probably 12 years or more). I have PTSD from the danger I was in since 2020 in relation to my youngest child’s complex behaviours of concern. In 2022 I very nearly died 4 times as a result of these behaviours. There were many other instances when I was in danger of death, but those four times haunt me most.
As a result of spending so much of my life doing unpaid care work I have virtually no super annuation, as I was unable to participate in the workforce for many years. However, when my son got his first NDIS plan in 2016, I was able to return to study part-time online. I completed a bachelor’s degree from 2016 – 2022. This would not have been possible without my son’s NDIS supports at the time. I have since gone on to complete an Honours degree and am now mid-way through a PhD, contributing new knowledge to Australian society. This is how vital the NDIS has been to me as a carer. The NDIS enabled me to return to education, to complete two degrees, develop a career and position myself to begin a PhD once my carer responsibilities lessened. It has enabled me to contribute to society, both economically and academically.
This is the positive, pro-active side of what the NDIS has meant in my life as a carer; the ability to access education, to have a sense of myself beyond the confines of my carer role, to work towards a career, to have a voice in the world.
It has also enabled me more basic things; like the ability to stay alive. The ability to have the professional supports I have needed to understand my son’s needs, to develop strategies to support him, to advocate for his needs in the school system while he was at school.
There is so much I need to say here, but the short time-frame for submissions means I an unable to say it all.
I am deeply concerned about this proposed bill and the speed at which it is being rushed through. These proposed changes are enormous in people’s lives – in the case of my son
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(youngest) who is in SIL and SDA, I am not exaggerating when I say this bill could upend his whole life, and put his life at risk.
I will briefly outline some of the reasons for why how this bill would impact each of my children:
My eldest – is 26 years old and has level 2 autism. They also have chronic pain and physically disabling conditions. Their NDIS supports have enabled them to recover from autism burnout, and to develop strategies to enable them to participate in society while managing their disability-related limits to capacity. They are currently very involved in the arts and are in the process of producing a show for the Melbourne Fringe Festival. They are engaged with a disability theatre company, funding through their NDIS plan, which is contributing to arts and culture. They are also engaged in employment, running a peer support autism group.
All of these activities will be jeopardized for them through these proposed changes to the NDIS. Their access to the NDIS will be placed in jeopardy if this bill passes. Prior to accessing the NDIS my eldest was suffering from severe depression, including frequent periods of in-patient care in psychiatric units, and risk of suicide. It was the support of an Occupational Therapist under their NDIS plan which enabled them to understand their needs through a neuro-affirming lens, to put adequate sensory supports in place, and to begin their recovery.
It’s hard to find words for how proud I am of my eldest for coming through these challenges and going on to work and make their dreams come through into the world. The thought of watching them slowly slide back into the space they were in before they had supports is more than I can bear.
My middle child is 21 years old. They were late diagnosed with autism level 2. They have depression and anxiety. I am their carer. They moved back home a couple of years ago. They had been in transitional youth housing. The had had to leave home because of the risk posed by my son’s challenging behaviours at that time. It is only because my son (youngest) is now in SIL that my middle child could move home.
My middle child’s experience in transitional youth housing is an excellent example of how mainstream services are not equipped to support people with disability. My middle child did not have the functional capacity to manage their life even with the supports available through transitional housing. At the point at which they reached out to me and asked to return to live at home they were living in rags, as they had been unable to buy their own clothes. They were unable to go to the supermarket to buy their groceries, even though it was a short walk away. They were trapped in a cycle of poverty buying groceries over an uber-eats app, without realising that this was costing them far more.
They had been working in the libraries but due to their disability-related challenges had had to stop work. They were struggling with self-care and household tasks and had not managed
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to wash their bedding for a year. They were showering once a fortnight and struggling to brush their teeth. They were unable go to the doctor. Their mental health had deteriorated to the level where they had to go to the emergency department due to suicide risk. They were self-harming and experiencing suicidal ideation, panic attacks and shutdowns.
Now they are doing well. They have a small NDIS plan. The supports are really helping them. They are living back at home. They are showering every second day, have clean clothes and bedding, are working with an OT to create healthy and supportive routines. They are happy. They have employment goals and are working towards becoming a music tutor. They are keen to get their license, and we are just about to get an Occupational Therapy driving assessment for them (under their NDIS plan). Their NDIS supports enable to them to access the community without relying on me for this. I am very busy, I am doing a PhD and this also involves a lot of travel and time away from home. With my middle child’s NDIS plan in place I can be confident that I can safely leave them at home when I need to travel for work. This proposed changes with jeopardise that safety.
Choice and control in their supports is extremely important for all of my kids, and especially for my middle child. When they were in transitional youth housing their supports were outside of their choice and control. This meant that they were receiving supports from workers who neither understood their support needs nor respected their autonomy and self determination. This period of time has led to a high level of internalised ableism for my middle child. They learned to measure their worth against standards which were imposed upon them and they could not meet. We are doing a lot of work – myself and my middle child’s NDIS care team – to support their self-advocacy, self-determination, self-esteem and confidence. This work is now paying off, and the fact that my middle child has the confidence to start working towards employment goals and getting a license is a major achievement. The proposed changes in this bill would likely lead to my middle child fully losing their NDIS access. This would have a devastating impact on their mental health, functional capacity and life prospects. Rushing through these changes is ill-considered and cruel.
INCREASED PRESSURE ON HEALTH SERVICES
The financial savings to the government associated with these changes are spurious as many of these costs would merely be outsourced to other government services and systems. Has anyone calculated the increase in health costs over the coming years and decades if these changes go through? The impact on mental health for people with disability would be immense, and this will lead to greater reliance on mental health systems, including in-patient services. These health services do not have the capacity to pick up this increased demand, and the costs involved in meeting the increased demand need to be taken into account in decision making around this bill.
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My son, my youngest child, is 20 years old and have level 3 autism, severe intellectual disability and complex behavioural support needs. He is in SIL, living in an SDA. This is the hardest part of this submission to write as I risk triggering my PTSD in writing it. There is so much that I need to say here and I don’t have time to do it justice, due to the short submission time we have been offered.
My son is at extremely high risk of institutionalisation if these changes go through. In 2022 I became unable to care for him any longer due to the risk to my life from his behaviours of concern. There were no services I could find to care for him, either inside or outside of the NDIS. I had no alternative but to take him to hospital emergency department. He was admitted and when he began to violently destroy hospital property was shackled and sedated (chemically restrained). He spent 2 months sedated in a hospital ward. This was a period of effective institutionalisation for him. We (his NDIS care team and myself) were extremely lucky to find an absolutely wonderful SIL service for him. He was able to leave hospital in Feb 2023. He now lives in a purpose-built SDA property, with 2:1 SIL supports. We are currently reducing his reliance of anti-psychotic medication for behaviour management (chemical restraints). This is a gradual and supported process, which relies on clinical support from his speech therapist, occupational therapist, behaviour support practitioner, SIL staff and provider, psychiatrist, support coordinator and myself. We are having good success with this reduction. If this reduction in chemical restraints has to be halted due to NDIS changes this would be a clear violation of his human rights as a person with disability. My son is now able to access the community and has a weekly program of activities which he enjoys. These activities are vital to his quality of life, his mental and physical wellbeing and his capacity building. A 50% reduction in social and community access, as is proposed in the budget and this bill, would have a catastrophic effect on my son’s life. If my son’s SIL supports are unable to be maintained as a result of these changes he will be re-hospitalised. There is no other option available to him. The costs to the health care system in this instance would be immense. I am only now recovering from my PTSD. If my son loses his supports I genuinely do not know how I could cope. I have experienced suicidal ideation on a daily basis for years and years as a response to my severe carer burden. This ideation has now subsided to a low murmur. I fear it’s return should this bill be passed.
The thought of trying to support all three of my children through these changes is terrifying for me. The thought of watching them each lose hope, capacity, wellbeing, opportunities and safety as these changes roll out doesn’t just break my heart, it crushes my soul.
Please do not do this to us. Please do not snuff out our hopes and progress towards meaningful lives of participation and inclusion through an ill-considered rushed decision. Please do not propel us into isolation, seclusion, struggle and pain. We have been through
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enough, and we have come through it with such determination, resilience tenacity and creativity. Please do not send us back to the days of institutional abuse and neglect. Please.
Some further concerns about the proposed bill. Again, this is a rushed submission, I have many concerns about the bill but will focus on the ones that concern me most of all.
ACCESS TO THE NDIS:
From what I have read in the bill and commentary around it, the changes to access rules proposed by this bill could well result in both my eldest and middle child losing access to the NDIS altogether. This would lead to:
Poor mental and physical health. Loss of access to employment. Reduced life expectations and quality. Increased social isolation. Increased reliance on my supports as a carer – and honestly, after everything we have been through I don’t have it in me to provide these supports anymore. Non-NDIS supports to cover these gaps are not available, and when they are, these supports are not designed around the needs of people with autism – as my middle child’s experience in transitional youth housing shows. Reduced hope for the future. Reduced capacity in self-care, daily living tasks, and pretty much everything (especially for my middle child). Fear, struggle and hardship.
The proposal to change the definition of functional capacity to be defined outside of the circumstances makes no sense to me. How can there be an abstract functional capacity which someone is imagined to ‘have’ outside of the context of their life? This wording seems like an excuse for the CEO or minister to make up an idea of what a participant ‘should’ be able to do and just tell them they have to do. Disability doesn’t work that way!
INDIVIDUALISED PLANS:
The idea of automated plans, that are built around a pre-set, top-down idea of what people with a certain disability need on average is terrifying for me for all my children, and most
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especially for my son who has highly complex needs. It is also very difficult to convey the level and nuance of his needs to planners, and others, as his needs are so complex and specific to him. We have done so much work as a care team to identify, understand and articulate his needs. This work is vital for supporting him, and for reducing his reliance on chemical restraints, and supporting his human rights. For future decisions about his supports to be made without consideration of his individual needs is a recipe for disaster.
Person centred planning is the cornerstone of the NDIS in my mind. The whole scheme is intended to recognise the individual needs, capabilities and potentials of people with disability. To reduce it to a cookie-cutter one-size-fits-none model is against the premise of the scheme and would cause immeasurable harm, both for my family and the wider community.
REDUCTIONS IN SUPPORT
A 50% reduction in social and community participation funding would have a catastrophic effect on my son’s life. This would be a substantial cut to his daily supports and would leave him at risk of harm to self, others, the community and also at risk of incarceration, institutionalisation and death. I haven’t the heart to write more on this here. Please do contact me if you require further information on these risks. They are very real and have been provided to the NDIA on numerous occasions in the form of professional reports, risks assessments, historical incidents and my own carer’s statements.
A blanket cut across support categories for all participants would involve opening up many participants with high support needs to risks – some similar to my son’s, some different and particular to other participant’s circumstances.
I would very much like to know who will bear legal responsibility for consequences of these risks should this bill be passed and the risks play out.
CHANGES TO DEFINITION OF PARENTAL RESPONSIBILITY:
The idea of the NDIS minister legislating that parental responsibility is now defined as including the provision of significant support including supervision, personal care, transport, emotional and behavioural support terrifies me. My children are older so this change would not affect me and my family directly. However, I shudder for its impact on other families. The inclusion of behavioural supports in this list is particularly concerning.
Behavioural supports are vitally important for children with autism and associated challenging behaviours. These supports are outside of what is normal for a parent to need to
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provide to their children, and it requires ongoing clinical intervention to understand the drivers of challenging behaviours. It then takes ongoing work with a behaviour practitioner to trial support strategies, evaluate their success, and adapt these. The majority of this work already falls on parents and informal carers. It is far beyond what most parents have to consider. It is exhausting.
For my son one of the most important elements in his behaviour support is that people supporting him don’t react to his behaviours. This level of calm has always been incredibly difficult to maintain. Support worker hours have always been a vital support in giving me the time to rest, recuperate and get some time away from his supervision and challenging behaviours, so I could have half a chance of reacting as planned when they occurred.
Take these supports away from parents in situations like I was in and you will inevitably end up with a higher level of child relinquishment. Has anyone costed the increase in funding needed at a state level to child protection services and residential, out-of home care services to house and care for the high-needs children who will be relinquished when their parent’s burnout as a result of the changes in this proposed bill?
Rushing this bill through risks causing immeasurable harm. The changes proposed who have devasting impacts on the lives of people with disability, and their carers and families.
In addition, has anyone costed the impact on the economy as a result of job losses in the sector? Yes, there are things that need to be improved in the NDIS. Those of us who have lived within the scheme know this. But the Independent Review of the National Disability Insurance Scheme (2023) was well researched and contained thoughtful and considered proposed changes. This bill does not honour that research. At best it cherry-picks a few buzz words and cost-cutting measures while ignoring the core recommendations of the review. These were to work to restore trust for participants and nominees in the scheme, and to ensure that any alternative services are established prior to changing the NDIS. Both of these recommendations are being ridden rough-shod over in the interests of ill-considered cost cutting measures which, rather than reducing government spending overall, will simply kick the costs down the line.
In terms of financial costs this proposed bill will:
Lead to job losses for disabled people who will lose access to employment as a result in reductions in support. Lead to job losses in the disability sector through reduced demand for support workers, peer mentors, support coordinators, disability employment mentors, domestic supports, and therapists. Lead to reduced economic participation for unpaid carers ‘informal supports’ who will have to leave paid employment in order to try to fill the gap in supports left by cuts to participant plans.
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All of the above will effect tax revenue. Lead to increases pressure on health services as disabled people’s physical and mental health deteriorates as they lose access to NDIS supports, become more isolated, become unemployed, loss capacity, etc. Lead to increased pressure on child protection and state funded out-of-home care services as parents burn out and have to relinquish children with complex support needs. Lead to increased costs for prison services as the lack of NDIS supports, including behavioural supports will inevitably lead to greater levels of incarceration, particularly for young men with autism.
The consequences of this bill, should it become law, are far reaching and harmful. At the very least more time needs to be taken to consider these consequences. I urge the senate committee to recommend that this bill is not put into law.
Please do not do this to my family and to others in the disability and carer communities. It would be inhumane and cruel. We have all, in my family, been through enough. We have used the NDIS supports we have well, and have managed to, each of us, turn our lives around and build towards positive futures founded in meaningful participation in, and contributions to, society. I personally have spent hundreds, if not thousands, or hours coordinating supports for my children; engaging in person centred planning, working with teams of therapists and support workers, constantly learning and adapting my knowledge of my children’s disability needs and how best to support them.
For each of my children we have long-term plans in place, step-by-step plans to support their capacity building, community access and goals towards increased independence, self determination and (for my eldest) economic participation. This bill, if passed, would pull the rug out from all of these plans and reduce each of our life circumstances to reactive attempts to survive. Please do not do this to us. Our lives matter, and our contributions to society are valuable and deserve to be recognised as such.