Submission 2844
Submission in response to the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Prepared by
I am making this submission as the parent of two children who have needed disability support since early childhood.
I support a sustainable NDIS. I support action against fraud, exploitation and misuse of public funds. I support better decision-making, clearer evidence pathways and stronger accountability.
However, I do not support the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 in its current form.
My concern is that the Bill risks moving the NDIS back toward the kind of system my family experienced before the Scheme existed. That system was fragmented, underfunded and incredibly difficult to navigate. Services existed on paper but were not always available in real life. Families were sent between systems. Children waited during critical developmental periods. Parents were left to fill the gaps through private therapy, loans, charity, unpaid labour and constant advocacy.
My family lived through that.
I am asking Parliament to make sure this Bill does not recreate those same failures under a new name.
My family before the NDIS
I am the mother of twin sons who were born prematurely after significant early medical complications. From the beginning, our family was already carrying a lot. We were recovering from a traumatic pregnancy, premature birth, prolonged hospital admissions and the shock of having medically fragile babies.
One of my sons is profoundly Deaf and has Auditory Neuropathy Spectrum Disorder. He also has autism, mild cerebral palsy, dyspraxia and a history of significant developmental delay.
He is bright, capable, funny and deeply connected to language when he has the right access. But he did not receive consistent access to Auslan and specialist supports early enough. The impact of that preventable language deprivation continues to affect his executive functioning, theory of mind, processing, communication, relationships and wellbeing.
My other son also experienced severe global developmental delay, Level 2 Autism, severe executive functioning delay and significant low muscle tone. With the right supports over time, he has built capacity and is now in a much stronger position. His experience shows what early, individualised support can make possible.
My children are not examples of failure.
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They are examples of what happens when support is delayed, and what becomes possible when support is finally provided.
The beginning was overwhelming
When my Deaf son was discharged from hospital, we knew he had failed his newborn hearing screening. He was later diagnosed as profoundly Deaf with Auditory Neuropathy Spectrum Disorder. We were told there was a wide spectrum of possible outcomes and no guarantee that hearing aids or cochlear implants would provide reliable access to sound or spoken language.
I left hospital with a Deaf baby, but without a clear plan.
There was no one helping us understand what Auditory Neuropathy meant in everyday life. There was no clear explanation of how it could affect spoken language access, listening, processing, development or communication. There was no coordinated plan for language access. There was no clear pathway to Auslan. There was no team built around his functional needs.
Everything felt urgent, but nothing felt clear.
We were trying to understand Auditory Neuropathy, hearing aids, cochlear implants, speech therapy, Auslan, developmental delay, low muscle tone, feeding difficulties, sensory needs and what all of this might mean for his future. At the same time, we were also caring for his twin brother, who had his own developmental needs.
There was no single person guiding us through it.
There was no coordinated team.
There was no simple explanation of what we should do first.
We were trying to make major decisions while exhausted, financially stretched and emotionally overwhelmed. We were trying to understand medical information, therapy recommendations, hearing technology, early intervention options and funding systems that did not speak to each other.
Every new diagnosis brought more questions. Every delay felt like lost time. Every professional opinion carried weight because we did not yet know enough to question it. When professionals gave conflicting advice, we were left to carry the consequences.
One of the most stressful parts was not knowing whether we were making the right decisions.
We were told not to sign with our child. We were told his delays were because he was Deaf. We were told to focus on hearing and speech. We followed that advice because we were trying to do the right thing and did not yet understand the importance of full, early language access.
Looking back, I can see how much pressure was placed on us as parents to make decisions without the information, support or expertise we needed.
Submission 2844
Looking back at the evidence now
I still have the emails, letters and records from that time. I can see who I wrote to, what I asked for, how often I asked, and how hard I was trying to find support.
Looking back on those documents is deeply triggering.
It takes me straight back to that time — the exhaustion, the fear, the confusion, the financial pressure, and the constant sense that I was fighting systems instead of being supported by them.
It also brings back the impact this had on my children and on our family. We were not just dealing with disability. We were dealing with a system that made everything harder. We were trying to hold together appointments, therapy, travel, work, finances, family life, and the emotional weight of knowing that critical time was passing.
The hardest part was the sense of powerlessness.
I knew my child needed specialised access and support. I knew he needed language. I knew he needed people around him who understood Deafness, Auditory Neuropathy, Auslan, sensory needs and development.
But I could not provide all of that on my own.
No parent can.
I could love him, advocate for him, learn Auslan, pay privately, travel, search for services, write letters and ask for help. I did all of those things. But I could not replace a coordinated, properly funded, specialist disability support system.
That is what still hurts when I read those old letters.
They show how hard I was trying. They also show how much responsibility was placed on one family to solve problems that should never have been ours to solve alone.
This is why I am so concerned about this Bill. Any reform that shifts responsibility back onto families, assumes other systems will step in, or reduces individualised support risks recreating that same powerlessness for another generation of parents and children.
Searching for answers ourselves
Because there was no clear pathway, I searched.
I researched sign language. I found early signing resources. I began signing with my son. I self-referred to specialist deafness services. I found remote early intervention options. I located hearing support services. I contacted Deaf community organisations.
I found Parents of Deaf Children and Aussie Deaf Kids, where I connected with other families who were also trying to navigate their own child’s individual needs.
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Those families were trying to understand hearing technology, Auslan, therapy, early intervention, communication choices, funding gaps and the emotional impact of raising a Deaf or hard of hearing child in a system that did not provide a clear pathway.
Finding other families helped me feel less alone. But it also showed me that our experience was not isolated. Many families were trying to build support around their children themselves. We were sharing information, comparing services, asking questions and trying to work out what our children needed because the formal system was not giving us clear, coordinated guidance.
That is not how early intervention should work.
Families should not have to become researchers, case managers, fundraisers, system navigators and advocates just to access the supports their child needs.
Falling between systems
When my son was young, Community Health was one of the few supports that was working for us. He had significant low tone, feeding issues, gross motor delays, fine motor delays and speech and language delay. We were accessing physiotherapy, occupational therapy and speech pathology.
Later, after further developmental concerns were identified, we were referred to the state disability service system.
Once that referral occurred, we were told we could no longer access Community Health services. We expected a smooth transition.
Instead, we were placed on a waiting list.
At different times, we were told the wait would be around six to eight months. During that period, my son could no longer receive Community Health therapy, and the new service could not yet support him.
He was left in the gap between systems during the critical early years, when therapy and language access mattered most.
This is why I am so concerned about any part of the Bill that assumes another service system can meet a participant’s needs. My family already experienced what happens when responsibility is shifted to another system that does not have capacity.
The result was not support.
The result was no support.
The financial and emotional cost on families
Because the public system could not provide timely support, we paid privately.
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We paid for speech therapy, occupational therapy, physiotherapy and later Auslan support. At one point, therapy cost around $250 per week. At another stage, as both children’s needs increased and private therapy costs rose, we were paying up to approximately $420 per week.
. These were the supports my children needed to develop, communicate, move, regulate and participate.
In 2014, I paid privately for Auslan because it was not covered. I paid privately because my son needed access to language and there was no other pathway.
At one point, I took out a $10,000 loan to support my Deaf son while driving a car worth about $3,000.
I went to churches, community groups and local organisations, essentially asking for help. Some things were funded through a local service club, and I remain grateful for that support. But no family should have to rely on charity to access disability-related support for their child.
When supports are not funded, the need does not disappear.
The cost is simply pushed onto families.
The child either misses out, or the family goes into debt, burns out, gives up work, relies on charity, or spends years trying to repair preventable harm.
Before the NDIS, support often depended on proving crisis. I connected with a service that provided in-home care, but to keep that support I had to repeatedly obtain letters stating that my child was “at risk” if the service was removed.
I had to keep proving vulnerability.
It was deeply disempowering. It made support feel conditional on crisis rather than based on dignity, development, rights, family capacity or functional need.
A good disability support system should not make families prove they are at breaking point before help is provided.
It should ask what a child needs to develop, communicate, participate and thrive.
The impact of not having the right expertise
In our local area, there was no one who properly understood Auditory Neuropathy Spectrum Disorder.
There was no one who could clearly explain what it meant for my son’s access to spoken language, listening, processing or communication.
We were told not to sign with our child.
We were told his delays were because he was Deaf.
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We followed that advice because we did not know any different. We were parents trying to do the right thing, relying on professionals and services that we believed understood our son’s needs.
It was not until my son was around four and a half years old that we were told we should start using Auslan with him.
But even then, we were not given a clear plan for how to do that. We were not given the funding, workforce, family training or coordinated support needed to build Auslan into his life properly.
By then, critical time had already been lost.
Language deprivation is preventable
My son’s language deprivation was preventable.
This is not about blaming Deafness. Deafness does not cause language deprivation. Language deprivation happens when a child does not receive full, accessible and consistent language early enough.
My son was capable of language.
He needed access.
Because he did not receive the right language access and specialist support from the beginning, he continues to experience impacts today. These include difficulties with executive functioning, theory of mind, processing information, relationships, communication and understanding the world around him.
These impacts are not simply individual impairments. They are the result of a system that did not provide timely access to language.
When Deaf children are denied early language access, the consequences do not disappear. They can follow the child into childhood, adolescence and adulthood. They can affect learning, identity, mental health, family relationships, confidence and participation.
Much of this harm can be prevented.
That is why Auslan, Deaf mentoring, family Auslan training, specialist language support, assistive technology and multidisciplinary supports must be understood as access supports, not optional extras.
What changed when we found the right support
After years of concern about my son’s language development, we sought more intensive Auslan support.
I contacted Deaf community organisations. I began formal Auslan learning. I connected with a Deaf mentor. I found Auslan resources. I paid privately for support. I did everything I could to build a language pathway around my son.
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In 2014, I made the decision to travel a long distance every week so my son could attend a specialist bilingual early childhood setting for part of the week.
It was exhausting and expensive, but it made a difference.
During this period, his receptive and expressive language began to improve. Auslan gave him more reliable access to language, learning and connection. It helped him understand what was happening around him. It helped him express himself. It helped reduce frustration. It gave him a stronger foundation.
This experience showed me that the question was never whether my son was capable.
He was capable.
The question was whether he had access.
That is why individualised support matters.
I asked major early intervention providers for support for my son. I also asked about developing resources for families like ours — families trying to support Deaf children with complex needs, language access needs and different communication pathways.
I was told that it was not profitable enough because it was only a small demographic.
That response was devastating.
It told me that my child’s needs were seen as too small, too niche, or not worth investing in. It left us with nowhere obvious to go. It also showed how vulnerable families were when services were driven by what was available, what was funded, or what was considered viable, rather than what children actually needed.
Since the NDIS, this has changed in important ways.
It is still not perfect, and families still face barriers, but there are now more families choosing bimodal bilingual pathways. There are more families seeking both Auslan and English access from the beginning. Deaf community members and Deaf-led organisations have developed more resources and supports. Deaf mentors are now more visible and more often included in children’s support teams. More Auslan courses are being shaped around family needs. More specialist providers are setting up services to support Deaf and hard of hearing children, including children with additional disabilities and complex communication needs.
This matters.
It shows that when funding follows individual need, services can grow. Families can find providers who understand their child. Deaf community knowledge can be valued. Children can access language and identity earlier. Parents can build capacity instead of being left to search alone.
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This is one of the reasons I am so concerned about the Bill. If individualised supports are narrowed, capped or shifted back to mainstream systems, the fragile but important growth in specialist Deaf child and family supports could be undermined. Families could again be told that their child’s needs are too small a demographic to invest in.
My son needed a team that understood the whole picture: Deafness, Auditory Neuropathy, language deprivation, Hypotonic Cerebral Palsy, autism, motor planning, sensory needs and communication access.
He needed a specialist psychologist.
He needed a language specialist.
He needed a speech therapist who understood both spoken language and Auslan access.
He needed an occupational therapist who understood the functional impact of his combined disabilities.
He needed professionals who specialised in this space.
Generic supports were not enough. A speech-only model was not enough. A local service system without the right expertise was not enough.
He needed support built around his actual functional needs.
That is what the NDIS, at its best, has helped us access.
What the NDIS made possible
The NDIS has not been perfect. Families still experience barriers, delays, misunderstanding and poor decision-making.
But compared with the system we lived through before the NDIS, it has changed lives.
It has allowed us to find specialist providers who understand Deafness, Auditory Neuropathy, language deprivation, autism, executive functioning, sensory needs and communication access.
It has allowed us to build a more appropriate team around my son.
It has allowed him to build skills, confidence and capacity.
It has also changed the pathway for my other son.
When my other son was younger, he had severe global developmental delay, Level 2 Autism, severe executive functioning delay and significant low muscle tone. He needed substantial support to build skills, regulate his body, process information and develop greater independence.
Submission 2844
With the right support over time, he has made significant progress.
He is now in a position where, once appropriate mainstream and foundational supports are properly established, some transition away from individualised NDIS supports may be the right move for him.
That should be seen as a positive outcome. But it must be done carefully.
His needs have changed, but they have not disappeared.
He still needs support at key points, particularly when he experiences burnout. When he burns out, it can significantly affect his executive functioning, his ability to process information, his capacity to manage daily demands, and his ability to maintain relationships and make safe, informed decisions.
He also needs ongoing capacity-building support as he transitions into adulthood. This includes support to manage relationships, understand expectations, build independence, navigate adult systems, regulate stress, communicate his needs and maintain the gains he has made.
This is why reform must not treat progress as proof that support is no longer needed.
Good support can help a person move toward greater independence. But if that support is removed too early, the person may lose capacity and return later in crisis.
The goal should not be to remove support.
The goal should be to build capacity, maintain progress and ensure people have the right support at the right time.
Why this Bill concerns me
My concern with the Bill is not one single amendment.
It is the combined effect of several changes that may narrow access, reduce flexibility, place more responsibility on families, and rely too heavily on mainstream or alternative systems that may not be ready.
My family’s experience shows what happens when children are sent to systems that exist on paper but cannot meet their needs. It shows what happens when parents are expected to fill the gap. It shows what happens when support is delayed during critical developmental periods.
It also shows what becomes possible when support is individualised, specialist and timely.
The Bill must not recreate the old system under a new name.
The definition of functional capacity must reflect real life. Disability does not happen in artificial settings. For Deaf children, a child may appear to respond to sound but still not reliably access spoken language. A child may appear to manage in some situations but still miss language, context, incidental learning and social information. Functional capacity must
Submission 2844
be assessed in the real environments where children communicate, learn, build relationships and participate.
Reassessment must remain accessible when needs change. Children’s needs change quickly, especially during early childhood, adolescence and transition to adulthood. If reassessments become harder to access, children and young people may be left in unsuitable plans for too long. That can lead to regression, family crisis, developmental harm and greater support needs later.
Complex disability must not be narrowed into one impairment. My children’s support needs cannot be understood by isolating one diagnosis from another. Functional impact often comes from the interaction of impairments, environments, developmental history and access barriers.
Mainstream services must be real before they are relied on. Before the NDIS, we were repeatedly sent to systems that could not meet our needs. Community Health stopped. The state disability service system had long waiting lists. Local services did not understand Auditory Neuropathy or language deprivation. There were no clear Auslan pathways. Specialist supports were limited, distant or unaffordable. The result was not support from another system. The result was no support.
Parental responsibility must not replace disability support. Parents support their children every day. That is not in question. But disability-related support must not be dismissed as ordinary parenting. Before the NDIS, I was not just parenting. I was coordinating services, researching Auditory Neuropathy, learning Auslan, paying privately for therapy, travelling long distances, seeking charity support, obtaining risk letters and advocating constantly. That was not ordinary parental responsibility. That was a family compensating for system failure.
Value for money must include the cost of not providing support. Cheaper is not always better value. A cheaper support is not comparable if it does not meet the participant’s actual needs. Auslan access, Deaf mentoring, specialist language support, family Auslan training, specialist psychology and multidisciplinary support may not always look like the cheapest option, but they can prevent lifelong harm.
Evidence rules must not disadvantage low-incidence groups. Deaf children with Auditory Neuropathy and language deprivation risk are a low-incidence group. There may be fewer large-scale studies compared with more common disability supports, but that does not make their needs less real. Specialist evidence, individual outcomes, functional evidence, family evidence and lived experience must matter.
Approved supports must be properly funded. If a support is approved but not funded at a level that allows the person to actually access it, then the support only exists on paper. My family knows what happens when recognised needs are not funded properly. The cost is pushed back onto families, or the child goes without.
Improvement must not be used to remove support too early. My Deaf son’s cochlear implants did not cure his Deafness or Auditory Neuropathy. Hearing technology can be helpful, but it
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is not the same as full access to language. My other son has made significant progress through support, but that does not mean his autism, executive functioning difficulties, processing needs or vulnerability to burnout have disappeared. Improvement should be celebrated, but it should not be used to remove the support that made improvement possible.
Transition to mainstream or foundational supports must be safe. I am not opposed to mainstream or foundational supports. For my other son, some transition may be appropriate in the future if the supports are properly established and able to meet his needs. But transition must not be forced. It must not happen before the supports exist. It must not leave families carrying the gap.
Fraud prevention must not restrict legitimate support. I support action against fraud. But this Bill does more than address fraud. It also changes access, planning, reassessment, reasonable and necessary supports, family responsibility, mainstream service assumptions, plan renewal and funding controls. These changes affect legitimate participants and families. My family’s story is not about fraud. It is about what happens when children cannot access timely, individualised and specialist support.
Recommendations
I ask that the Bill not proceed in its current form unless stronger safeguards are added.
I recommend that the Bill be amended to ensure:
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Functional capacity is assessed in real-life environments and includes communication, sensory, social, developmental, relational and environmental access barriers.
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Participant-requested reassessments remain accessible when a plan no longer meets the participant’s functional needs, when current supports are ineffective or insufficient, or where there is risk of developmental harm, burnout, regression, crisis or loss of capacity.
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Supports can be funded where needs arise from the interaction of multiple impairments, communication barriers, developmental impacts and disability-related functional needs.
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The NDIA must confirm that another service system is actually available, accessible, timely, appropriate, skilled and capable before refusing a support on the basis that it should be provided elsewhere.
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Parental responsibility must not be used to deny disability-related support, family capacity building, communication access, therapy, early intervention, behavioural support, disability-related transport or specialist supports.
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Value-for-money tests include long-term outcomes, prevention of harm, maintenance of capacity, communication access, developmental outcomes, family sustainability and suitability for the participant’s actual needs.
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Individual evidence, specialist professional evidence, participant history, functional outcomes, family evidence and lived experience remain valid forms of evidence, especially for low-incidence and complex disability groups.
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Reasonable and necessary supports are not knowingly underfunded. If a support is approved, funding must be sufficient to access that support in the participant’s real circumstances.
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Improvement, therapy, hearing technology, skill development or increased capacity are not used to deny support where the person still needs support to maintain capacity, prevent regression, communicate, participate, manage burnout or transition safely.
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No participant loses NDIS access or supports because of mainstream, foundational or alternative supports unless those supports are already established, funded, skilled, available, accessible, appropriate and safe.
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Fraud prevention measures are separated from access, planning and support reduction measures. Anti-fraud reforms should target fraudulent conduct directly and should not reduce legitimate participants’ access to reasonable and necessary supports.
Conclusion
My family’s experience before the NDIS was one of exhaustion, financial strain, long waiting lists, service gaps, private therapy, charity support, constant advocacy and preventable harm.
My children were never the problem.
The problem was a system that did not respond early enough, clearly enough or individually enough.
The NDIS was created because the old system was not working.
It was created because people with disability needed support based on their needs, goals, rights and functional capacity — not what happened to be available in their postcode.
My Deaf son’s experience shows what happens when early language access, specialist support and individualised planning are delayed.
My other son’s experience shows what becomes possible when support is provided early and consistently.
The NDIS must be sustainable, accountable and protected from fraud.
But sustainability cannot be achieved by returning children and families to the very failures the NDIS was created to fix.
This Bill must not take us back to a system where families are told to rely on unavailable mainstream services, prove crisis, pay privately, seek charity, or accept generic supports that do not meet their child’s needs.
Submission 2844
Deaf and hard of hearing children must have early, timely and individualised access to language, communication and specialist disability supports.
Children with autism, developmental delay, executive functioning difficulties and motor challenges must have support that builds capacity and protects them during key life transitions.
Families should not have to go into debt, rely on charity, prove crisis, or spend years trying to undo preventable harm.
The NDIS must protect children like mine.
It must not send them back to a system that already failed them.