Submission 69
Submission to the Senate Community
Affairs Committee
Executive Summary
My daughter, diagnosed with Level 2 Autism Spectrum Disorder, was admitted to hospital 17 times over 3 years, yet received no appropriate neuroaffirming care and was discharged without support. We were told our only option was to return in crisis and “hope she did not end her life.” We were forced to privately fund care to keep her safe. Since implementing consistent, relationship-based support, she has had no further hospital admissions. She is now a participant in the NDIS, and this stability is directly linked to access to flexible, individualised supports. This demonstrates the critical importance of flexible, preventative NDIS supports.
Inquiry into the NDIS Future Generation Bill
I am writing as the full-time carer and parent of my daughter, a young woman (aged 21) diagnosed with Level 2 Autism Spectrum Disorder, ADHD, POTS, PTSD, significant sensory regulation difficulties, autistic burnout, and a history of severe mental health deterioration and eating disorder presentations. It took 3.5 years to be correctly diagnosed due to the lack of understanding in general about female autism presentations.
My daughter is an intelligent, thoughtful young person who engages deeply with the world around her, but her nervous system and sensory profile mean that everyday life can be overwhelming and, at times, unsafe without the right supports in place.
Over the past several years, our family has experienced firsthand what happens when people and their carers fall through the gaps of Australia’s mainstream health and disability systems.
My purpose in making this submission is to help decision-makers understand the real world consequences of reducing flexibility, increasing rigidity, or narrowing access within the NDIS — particularly for autistic people with complex presentations that do not fit neatly within traditional medical models.
Failure of the Mainstream Medical System
Over a period of approximately 3 years, my daughter was admitted to St Vincent’s Hospital on 13 separate occasions and private inpatient facilities on 5 separate occasions. During this time, I raised the possibility that autism was a key underlying factor in her presentation.
Submission 69
These concerns were consistently dismissed because she was “too intelligent and too verbal”.
Following a week-long admission in the Psychiatric Emergency Care Centre (PECC) at St Vincent’s Hospital where she was suicidal and in a state of psychosis, we were told that her needs would have to be managed in the community and that there was nothing further the hospital could offer.
During that admission, a psychiatrist spent approximately 10 minutes with my daughter, showing her the diagnostic criteria for Borderline Personality Disorder (BPD) on a phone, and diagnosed her based on her self-report while she was in a highly dysregulated state.
This diagnosis was later strongly disagreed with by her treating GP, psychiatrist and psychologist in the community, all of whom had worked with her over a much longer period and were adamant that BPD was not an appropriate diagnosis. The diagnosis still remains on her public record.
When I questioned how we were expected to manage her at home when she was not safe in a locked ward, I was told our only option was to return in crisis and hope she did not end her life in the meantime and that we were probably better at keeping her safe because we cared more than anyone else”.
Attempts to access private care were unsuccessful, even when we offered to privately fund additional nursing support.
As a result, we were discharged back into the community without a safe or sustainable plan.
At that point, I reached complete exhaustion. Out of desperation, and with help from her private psychiatrist we arranged for a private enrolled mental health nurse at significant personal cost, as we were providing 2:1 24/7 supervision to keep her safe and could not continue without support.
Without this privately funded support, I do not believe we could have safely managed her at home. Since implementing this support and being accepted onto the NDIS, my daughter has had no further hospital admissions.
As a result of her experiences within the medical system, my daughter now experiences significant trauma and PTSD related to healthcare environments that did not understand or respond appropriately to her needs.
Systemic Gap: Neurodiversity and Care Models
There is a significant lack of understanding within the public mental health system regarding autism in young women, autistic burnout, nervous system dysregulation, and neuroaffirming approaches to care.
Submission 69
There is also limited understanding of eating disorders, particularly the strong and well documented link between eating disorders and neurodivergent women.
This leads to misdiagnosis, inappropriate treatment pathways, and exclusion from services that are not equipped to manage neurodivergent needs.
The Role of NDIS Supports
My daughter is now a participant in the NDIS, and these supports have been critical in enabling her to remain safe and stable in the community.
Flexible, individualised NDIS supports have been critical in preventing further hospital admissions, stabilising her nervous system, and supporting her gradual re-engagement with daily life.
These supports are preventative in nature and reduce long-term system costs.
Concerns About Proposed NDIS Changes
Reducing flexibility risks pushing participants back into crisis-based systems that have already proven ineffective. Narrow interpretations of evidence may exclude complex neurodevelopmental presentations.
The Impact on Carers
For several years, I have effectively acted as a full-time carer, managing safety, emotional regulation, care coordination, and daily functioning.
This has had a significant impact on my own health. I have been diagnosed with PTSD and depression as a result of prolonged stress and responsibility without adequate system support.
This has also affected family relationships, financial stability, and overall wellbeing.
I have had to close my business to become a full-time carer, and my husband has had to take unpaid leave during periods of crisis to support our family.
When systems fail to provide adequate care, the burden does not disappear — it is transferred onto families.
Recommendations
Preserve flexibility within self-managed NDIS supports.
Recognise the importance of preventative, relationship-based care.
Submission 69
Embed neurodiversity-informed approaches in policy design.
Avoid overly rigid interpretations of support needs.
Closing
Our experience demonstrates what happens when systems fail and why flexible NDIS supports are essential in preventing further harm.
Thank you for reading my submission.