National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1281
Submission to NDIS Inquiry
Submission by: Autistic mother of two autistic children on NDIS.
The NDIS has been life-changing for my family. It has provided access to supports that help my children participate in daily life, regulate emotionally, attend school where possible, develop independence, and importantly, reduce crisis within our family. I am scared to imagine our life without these supports as we are already under immense stress managing our disabilities. Without these supports, I am quite sure my mental health and functioning (as well as that of my entire family) would be much worse.
My concerns about changes to the NDIS Act
I am deeply concerned about many of the proposed changes to the NDIS Act, particularly around the concepts of “permanence” and eligibility. Families are now being placed in an impossible position where they must simultaneously demonstrate both “permanent disability” and “improvement.” It is ridiculous. It creates fear that any progress achieved through therapy and support may be used as evidence that a person no longer requires support. It discourages hope, progress, and early intervention.
We’re expected to demonstrate that we have independently sought publicly-offered supports (which are either non-existent or have impossibly long wait-lists), but show they didn’t help – but that they would help if they were continued?! It simply doesn’t make sense. The eligibility criteria is convoluted and open to individual discretion – which has caused insanely inconsistent application and access to the NDIS.
Neurodevelopmental disabilities such as autism and ADHD are lifelong conditions. While supported, our functioning, distress, and skills can improve. This should be celebrated and used to justified effectiveness of support – not to remove supports.
My concerns about ‘Thriving Kids’
I am extremely concerned about the “Thriving Kids” approach. It focuses too heavily on parenting and developmental delays measured through school-based functioning.
Firstly, “Parenting classes” and parent-specific interventions, while useful for some, are extremely condescending as a systematic approach and fail to understand the nuances of parenting a neurodivergent child. I have 4 university degrees, including a degree in psychology and a degree in educational strategies for autism. I strongly believe my children’s NDIS funds would be far better utilised provided them personalised supports than educating me (as my large HECS debt is used for that).
In order for my children to access the community and to reduce their dependence on me (ie. increasing carers’ ability to better contribute to our country’s economic output) – my children need safe people within the community outside of our family. Group and school- based services are not accessible for my children and moving services to this setting will be
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1281
harmful – reducing our accessibility to beneficial supports and significantly reducing our functioning/contribution to society.
Secondly, many autistic and neurodivergent children do not present as obviously struggling at school. Some children excel academically while experiencing extreme anxiety, masking, emotional collapse, school refusal, sensory overwhelm, or severe functional impairment at home. Many children and families are ostracised from the school environment (especially school refusers – like my youngest child).
My children would likely have been missed entirely if schools were solely responsible for identifying and responding to their needs. Teachers often do not see the level of distress, exhaustion, shutdown, aggression, panic, sleep disturbance, or functional dependence occurring outside school hours. Some children hold themselves together at school and collapse at home. Others cannot attend school consistently at all. I am deeply worried that children with high support needs but complex or masked presentations will fall through the cracks.
I am also concerned that this places unrealistic pressure on already overwhelmed schools and teachers. Schools are not disability assessment services, mental health systems, family support systems, or healthcare providers. Expecting schools to carry this responsibility risks both children and educators being failed.
Impact of Ambiguity Surrounding Changes to the NDIS
The ambiguity and inconsistency of NDIS implementation is extremely anxiety-provoking for many disabled people and families. There is widespread confusion and inconsistent implementation of rules surrounding eligibility, reassessment, permanence, foundational supports, and what supports people may access or may lose.
Many disabled people already struggle with executive functioning, cognitive overload, anxiety, paperwork, communication demands, and navigating systems. The systemic inconsistency and pushback we are experiencing is exacerbating our disabilities and causing families to give up. It is truly horrific to witness on throughout the disabled community.
The burden of proving disability repeatedly is exhausting and financially draining. Many people simply give up because the process itself becomes inaccessible.
Case study – A large disabled family seeking NDIS - rejected
I have just helped one family (2 adults, 7 children – all with diagnosed disabilities, none with access to the NDIS) go through the tribunal process to get on of their most disabled children access to NDIS funds. This child had 12 standardised assessments and several psychiatrist diagnostic letters registering his disabilities – yet he was still rejected from the NDIS three times and went to tribunal. If I had not supported this family through the process, they would have given up – and they would not have tried to access supports for the other 7 members of the family. This family had literally spent 20% of their entire family income seeking diagnosis and supports for their family members because public services do not exist or had several-year waiting-lists – but it wasn’t enough for the people making the
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1281
decisions (who I am certain in some cases did not even read the supporting documents). After months of ridiculous and intimidating tribunal processes, the NDIS lawyers conceded and gave him a very small NDIS plan. What an extreme waste of time, money, and burden to place on a large disabled family!! The money used on this process could have provided him years of funding starting years earlier – which would have reduced the delays his disability has had on his schooling. Shame on you.
Changes to the NDIS create enormous uncertainty and fear within the disability community. Families are terrified of losing supports that are currently holding their lives together.
For carers and parents, especially those who are themselves neurodivergent, unsupported, or exhausted, the increasing administrative burden is unsustainable. Families are spending years fighting systems instead of caring for their children.
There is also significant emotional harm caused by constantly needing to justify and “prove” disability in deeply personal ways. Many people feel dehumanised, distrusted, and retraumatised by the process.
I am particularly concerned about children with complex presentations being excluded because they do not fit simplistic ideas of disability or developmental delay.
Reducing access to Supports for 160,000 people
Help people who need it. Stop with the money and time wasted on clarifying “eligibility”. If a person has a disability and needs supports (which really isn’t hard to define), then provide supports. It’s not as complicated as you are pretending it is in order to justify cuts.
You didn’t need to justify the purchase of billion dollar boats from America that will we NEVER actually receive – why are you making poor disabled people prove time and time again that we are disabled?!
Without social and community supports, isolation would increase significantly for many disabled people and families.
These supports are often what allow disabled people to participate in the community, develop friendships, build confidence, access activities, and experience belonging. Without them, many children and adults would become increasingly isolated, anxious, and dependent on family carers.
For carers, the loss of these supports can also lead to burnout, mental health deterioration, relationship breakdown, and inability to sustain caring roles.
What would happen if your capacity building supports were reduced or removed — or if you never had access to them in the first place?
Without capacity building supports, my children’s functioning, emotional wellbeing, and participation would decline significantly.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1281
Capacity building supports are not luxuries. They are often the very supports that prevent long-term crisis, family breakdown, mental health deterioration, school disengagement, and hospitalisation.
These supports help children learn emotional regulation, communication, independence, coping strategies, and participation skills. They also help families understand disability and respond in ways that reduce distress rather than escalate it.
Removing these supports would not remove disability. It would simply remove the supports that help people function and participate more successfully in daily life.
In many cases, reducing early and preventative supports will likely create greater long-term costs for families, schools, health systems, mental health services, and the broader community.