Submission 2587
National Disability Insurance Scheme Amendment (Securing the NDIS for Future
Generations) Bill 2026 Submission
I am writing to you as a constituent and as someone extremely concerned about the proposed NDIS legislative changes before Parliament. I have a diagnosed disability – I am an Autistic and ADHD mother of 3 children, two of whom are neurodivergent and receive NDIS funding. I rely on very limited informal supports as I have not had capacity to apply for NDIS funding for myself and have recently had to move town because we were unable to be supported in a regional area and needed more support from our extended family. Though we have received NDIS early intervention, it still isn’t enough to enable us to function in education and community systems that don’t understand what equity looks like, and don’t have the structures in place to be able to provide sensory, regulation and nervous system support, and individual needs based accommodations to allow disabled students to participate and thrive.
I am also a private Speech Pathologist and sole trader, who is passionate about communication and supporting neurodivergent children and young people and their families to build their strengths and to have access to communication. I am also a volunteer with the Australian Breastfeeding Association, and through this service I support mothers and babies. I’ve been able to continue with my work as a speech pathologist because of the NDIS and the flexibility it has allowed in working for myself within the context of being a carer.
My 10 year old is Autistic, and my 7 year old is AuDHD, and has also been diagnosed with ODD. They are highly masking children who appear “fine” in school, but have significant support needs and spend most mornings and afternoons in a state of significant distress and dysregulation due to masking their learning, sensory and regulation needs whilst at school all day. My 5 year old is likely also AuDHD, however we have not had the capacity or finances to have her formally assessed.
I’m asking you to oppose this bill, and to seriously consider crossing the floor if necessary.
Though we are still struggling to function day to day – to work, play, attend school, and participate in the community, I know that we would be far worse off had we not had access to NDIS early intervention funding.
I am near breaking point with advocating for my children to receive the disability supports and accommodations in their Education settings that I thought they would have access to. The recommendations have been made by my children’s Allied Health Therapists. I have spent the last 3 years trying to get my children’s needs met in their school environment so that their nervous systems felt safe enough to attend. I’ve learned about sensory processing, interoception, coregulation, communication, nervous system regulation, behaviour, trauma informed care. How to lend my nervous system to my children when they’re dysregulated, distressed and unable to function. I’ve had to learn first hand about “school can’t”. Not “school refusal”, but school can’t. With my son coming home from school many days of the week talking about wanting to self harm, or saying that he wished he was dead so that he could have a break from school. With my children being unable to get ready for school,
Submission 2587
unable to walk through the gate, hitting their heads against the dash of our car and crying and screaming that they couldn’t go – that when they’re at school they can’t ask for help, they’re excluded, that there’s nothing to do, and that no one listens to them. Where they asked questions like “If I slam my hand in the car door, will I have to go to the hospital, and then I’d be able to have a break from school for a while?”.
My children called it “torture school” and would ask me daily why they had to go. That it was like a dungeon, that kids are treated worse than pets, where teachers don’t listen and punish anyone who is different, where they are always bored, where they are excluded, where it’s too noisy, and too loud, and too much, and too hot, and where they never feel safe to say that there is a problem. Where they don’t feel safe to make mistakes or ask for what they need. Where they don’t feel safe to ask for help when they’ve been bullied, because when they do, they’re told to “go play with someone else” or “Don’t be a dobber” or “that’s it, you keep standing up, you’ll have to go to the planning room”. Where they are asked “Why didn’t you say something” when other children have bullied, pushed them or held them down. Where threats from teachers to behave or hurry up are the norm – “If you don’t hurry up, you’ll miss out on lunch” or “If you don’t play nicely, you’ll all go to the reflection room at lunch”. Where their sensory needs, nervous system safety, relational safety, and learning accommodations were completely inaccessible.
I thought that my children (and my Autistic clients - through my work as a Speech Pathologist) would be protected by the Disability in Education Standards, and the Disability Act, however this has not been my experience. I’ve had to fight and advocate so hard for Education settings to listen to the research around what helps Autistic and ND students thrive in schools – for my children and for my clients. A brilliant study came out of South Australia in 2025 that showed that environmental supports have the biggest impact on school success for Autistic students, however in my experience in a regional town, individual education plans and supports focus on changing the child, rather than providing environmental supports that that allow each individual to participate, be included and thrive.
I’m now advocating at this level – writing a submission, even though I have very little capacity to do so, to try with everything I have left to ensure that the NDIS continues.
The supports that we have had access to through the NDIS for my 7 and 10 year old have been instrumental in supporting basic survival, and are likely the reason we are all still here.
Funding for allied health therapies has allowed me to understand my children’s individual needs – their nervous systems, their sensory needs, their communication needs, and how to support behaviour and regulation. It has helped me learn how to coregulate for each child. It has helped build their strengths, has helped us all understand our brains and our challenges, has helped us understand masking and it’s impact on mental health, and allowed us to understand my children’s fluctuating capacity. The NDIS funding has given us safety, regulation, access to communication, and has supported my children to participate when they had capacity to do so and be included in some community settings. It has helped me understand what they needed and what to advocate for when we are out in the community. We have been able to meet my children’s individualised disability support needs – at least in
Submission 2587
the home and some community settings. Even though school has felt unsafe, we were able to support our children to feel like they belong in our home, church, the library, at the shopping centre, or at playdates with peers at the park – because of our NDIS early intervention supports through local private allied health therapists. There are no “foundational supports” that could even come close to providing the NDIS intervention and support that has allowed us to survive.
We are being told that the proposed reforms are about sustainability, but disabled people, carers, families and professionals – we can see that this isn’t the case. Making these changes is just shifting the care to someone/somewhere else, the support needs aren’t going to “disappear”. This is not sustainability, this is just shifting the responsibility back onto families, teachers – unpaid caring labour.
As a mother – I can’t hold any more. The day to day toll of being an AuDHD disabled adult, who is caring for and coregulating neurodivergent children, who is advocating daily for their Education and support needs, whilst also caring for a husband with diagnosed depression and anxiety with very little support is exhausting – or exhausterwhelmulating (exhausted/overwhelmed/overstimulated).
I’ve had to reduce my work hours, in a profession where people are on extensive waitlists for Speech Therapy. I’m only able to work very short hours because of my caring roles – taking my children to allied health therapy appointments, learning how to put accommodations and supports in place, constantly problem solving, and stepping in when they are distressed and dysregulated, because Education spaces don’t know what to do or how to support them.
We have accessed different types of services for therapy, and I have significant experience of both registered providers and unregistered ones. The proposed NDIS changes would reduce our choice and control around the therapies that work to meet our children’s needs. We currently access Allied Health sole traders, who aren’t NDIS registered for Occupational
Therapy, Psychology, Physiotherapy, Dietician, and Speech Pathology interventions. They
are all registered with their professional organisations, but aren’t NDIS registered. We’ve chosen these services because the behavioural approaches recommended by the therapists in registered organisations resulted in my children being more dysregulated more of the time – we had less capacity to participate in our community and we weren’t functioning. In our experience, highly qualified and experienced therapists have gone out to work for themselves, and most registered organisations seem to have inexperienced, new graduate allied health therapists.
Having the NDIS and access to choice and control has allowed us to build a team of therapists who have the skill and experience to provide neuro-affirming therapy and care, and it is meeting many of my children’s needs. Though my children continue to have a disability and will have lifelong challenges, they are supported to be included and participate at home, and some community spaces, and they have more capacity to engage in everyday activities with support. They have less dysregulation than previously, because the strategies we are implementing and the supports are neuro-affirming. The therapy is individualised, and takes into account my children’s unique neurology.
Submission 2587
I have significant concerns about the changes in registration for allied health specifically – allied health therapists are already required to be registered with their respective professional bodies. Adding NDIS registration and the cost of this is likely to have a significant and negative impact on the allied health workforce – especially in regional and remote areas. Most of the private allied health speech pathologists and OT’s in the town I’ve been living in are sole traders – parents of children with additional needs, they are highly skilled and do incredible work. In industries where there already aren’t enough therapists to provide supports that are needed, wait times are likely to increase rather than decrease. I suspect that many Therapists will leave their professions to provide care for their children – their capacity to work will reduce which will mean more wait times, and even less, quality early intervention for children with disabilities.
The public conversation and the reporting on the NDIS and proposed changes has become deeply concerning and discriminatory. Disabled people have been portrayed as financial burdens rather than human beings entitled to support, inclusion and safety, and our society already has a long way to go if we are to actually be inclusive.
The enormous invisible labour already being carried by parents, carers, and mostly women continues to go unrecognised. My children only appear to be “coping” at times because my husband and I have sacrificed our own health, employment, finances and wellbeing behind closed doors, to keep them safe and functioning. Removing supports from the NDIS does not remove disability support needs. It transfers the burden onto already stretched and exhausted families (mostly mothers), onto the hospital system, onto schools and daycare centres, onto emergency systems, homelessness services, and unpaid carers. Families, particularly mothers, are already providing extraordinary levels of unpaid labour behind the scenes to support disabled and neurodivergent children to access the community, to participate, and to access education.
The long term cost of removing my children and those like them from the NDIS is likely to cost our Government significantly more in the long run – with individualised and needs based supports in place I can see that my children will be supported to be included, they will have access to therapies that help them be able to function, to work, play, participate, and contribute to this world and to the communities they are a part of. I suspect that there will be times in their lives where their support needs will vary and fluctuate – this is common for Autistic humans. Without NDIS supports, I have significant and realistic concerns that I will lose access to work, as my caring role would increase significantly, my children would lose access to much needed therapies that allow them and our family system to survive and function, and this is likely to put a significant burden on the health and mental health settings, the education setting, and on my aging parents who are at the stage where they themselves need care and support.
Without their current NDIS funding supports, my children would likely lose access to school, to building their independence. They’d lose access to regulation, to communication, to being able to function and access the community.
Submission 2587
I’d like the senate to understand that women and mothers are already holding an enormous burden of unpaid caring labour in this country. We CANNOT do more. For so many of us, we are caring for children with a disability, for partners with mental health or health diagnoses, and for our aging parents and grandparents, whilst also having a disability ourselves. The NDIS and access to quality, experienced allied health professionals has been a lifeline. We have lost jobs, careers, friends, capacity to volunteer, capacity to work in paid work because we are carrying this load. The level of support we provide is unsustainable, and the cost of shifting supports from the NDIS to “informal supports” or foundational supports that already aren’t coping or don’t exist – To families, educational settings, to early intervention and aged care settings, to hospitals, to mental health facilities is likely to be catastrophic, harmful and will have a huge cost. Not only financially, but in human lives, in wellbeing, in dignity. The rates of suicide, especially in Autistic people is likely to increase. The rates of mental health and hospital admissions will increase. The number of people who will die because of increased waiting times, and because they won’t be able to access quality disability supports that they need for basic survival will increase.
Please do not let this happen.