Submission regarding proposed NDIS legislative changes
I am writing this submission from two perspectives. Firstly, I am an Accredited Mental Health Social Worker who works every day with NDIS participants experiencing psychosocial disability, autism, ADHD, complex trauma and other significant disabilities. Through my work, I see both the incredible difference that appropriate supports can make in people’s lives and the very real consequences when people cannot access the supports they need.
Secondly, I am the mother of a young adult living with Autism Spectrum Disorder Level 2 and a moderate speech and language developmental disorder. I am writing this submission on behalf of both of us because my son’s disability means he is not able to easily navigate a process like this independently, and that in itself demonstrates why appropriate supports are so important.
I want to acknowledge at the outset that I am grateful for what the NDIS has provided. The occupational therapy and speech pathology supports my son receives have made a genuine difference to his development, communication and quality of life. The NDIS has created opportunities that previously did not exist for many Australians living with disability, and I do not want that to be lost in this discussion.
However, being grateful for the support we have received does not mean the system is working as effectively as it should. It also does not mean that changes designed to improve sustainability should come at the expense of people who rely on these supports to participate in everyday life.
The transition from school to adulthood
My son’s transition from childhood into adulthood has highlighted significant gaps in the current system, particularly around what happens when young people leave school and are expected to navigate adult life with significantly fewer supports around them.
When my son was at school, there was a level of structure, routine and advocacy around him. He had educators who understood his needs and a school environment that provided support. Once he left school, those supports changed significantly, but his disability did not.
Adult life requires people to navigate employment services, Centrelink, healthcare, housing, transport, banking and many other systems. These systems are complicated even for people without disability. For someone living with autism and a moderate speech and language developmental disorder, they can be extremely difficult to understand and manage without assistance.
Unfortunately, no one contacted us before my son finished school to discuss whether he required additional transition supports, including School Leaver Employment Supports.
My son completed school with a Queensland Certificate of Individual Education. I am incredibly proud of this achievement because it represented years of work from him, his educators and our family. However, once he graduated, there was no coordinated transition into adulthood that
recognised the fact that the removal of school-based supports would create a significant increase in his support needs.
Instead, I found myself starting another lengthy process of obtaining reports and assessments to demonstrate that, as an adult, his support needs have increased beyond what I can reasonably provide as his parent.
Those reports cost thousands of dollars.
As a single parent, I have to work to support our family and pay our mortgage. I cannot simply stop working and become my son’s full-time carer. At the same time, I provide significant unpaid care, advocacy and practical support because my son cannot independently navigate many aspects of adult life.
The reality is that I am constantly having to make decisions about what support he misses out on because I need to work, or what work and income I sacrifice to help him access the things he needs.
This is an impossible position for families to be placed in.
My son lives with Autism Spectrum Disorder Level 2 and a moderate speech and language developmental disorder. He has difficulty understanding complex information, navigating bureaucratic systems, communicating his needs, accessing services and participating independently in the community.
These are not simply things that require more parenting. They are disability-related support needs.
What he needs is not for me to continue filling every gap indefinitely. He needs appropriate disability supports that allow him to build independence and develop the skills he needs as an adult.
Employment support needs to recognise disability
My son wants to work. He wants to participate in society and develop independence. The challenge is that he requires support to navigate the pathway into employment.
We connected him with employment services, including Your Town, because we expected he would receive support that recognised his disability, his individual abilities and the practical barriers he faces.
Unfortunately, his experience demonstrates some of the gaps in the current approach.
Over approximately eight weeks, he was referred to a training course that was unsuitable given his level of disability. During that same period, he was assisted to apply for one job.
That job required a driver’s licence.
My son does not currently have a driver’s licence, and this is exactly the type of situation where he needs appropriate support. Learning to drive, understanding the process, accessing lessons and building confidence are all things that require time, consistency and practical assistance.
As a single parent, I am already balancing being his parent, his advocate, his transport provider and his primary support person while also working to provide financially for our family. The reason he does not have a driver’s licence is not because he lacks motivation or because he does not want independence. It is because there are limits to what one person can reasonably provide.
A support worker could assist him with community access, appointments, understanding information, employment opportunities and developing the practical skills he needs as an adult. That type of support is not about doing things for him. It is about helping him develop the skills and confidence to do things himself.
Delays in accessing support have real consequences
Even after obtaining the necessary reports, we are facing another lengthy process while waiting for his change of circumstances to be considered.
During this time, his needs have not changed simply because the paperwork is still being processed. We are still trying to support him through a period of major transition without the level of support that would allow him to build independence.
This is not unique to my son. Many young people with disability experience significant delays at a time when they are trying to establish adult lives, develop employment skills and learn to navigate the world independently.
The concern is that the longer people go without appropriate supports, the more difficult it becomes for them to achieve the outcomes we all want: participation, independence and community connection.
Informal supports cannot be assumed indefinitely
A significant concern I have with the proposed disability policy is the assumption that families will continue to provide whatever support is missing from the system.
Some families can do this. Some cannot.
I am my son’s only consistent support person. His father is not involved in his life, and there is no extended family network who can step in if something happens to me.
If I became seriously ill or died, my son would be left trying to navigate adult systems that he does not have the capacity to manage independently.
He would need support to understand medical information, communicate with healthcare providers, manage government systems, make decisions and maintain safe housing.
This is why appropriate supports now are so important. Without them, there is a real risk that people like my son will experience poorer health outcomes, increased isolation, housing instability or greater reliance on crisis services.
It is far more effective, both financially and socially, to support people to build capacity and independence than it is to wait until they are in crisis and require much more intensive intervention.
The issue is not participants. It is accountability and oversight.
I support efforts to improve the financial sustainability of the NDIS. I support addressing fraud, misuse of funds and poor provider practice.
However, based on what I see professionally, the focus needs to be on improving accountability and ensuring funding is being used effectively, rather than reducing supports for people who genuinely need them.
I have worked with participants who have received services from providers for years but have no meaningful reports, no evidence of progress and no clear documentation demonstrating what outcomes have been achieved despite significant funding being spent.
I have also worked with participants who have funding allocated but are not necessarily accessing the supports that would have the greatest impact on their functioning, independence and quality of life.
These are areas where stronger oversight is needed.
I have also encountered situations involving highly vulnerable children and young people engaged with the child protection system where NDIS funding has been reportedly used to meet housing and accommodation needs, despite housing being a responsibility of the state.
These are children and young people who are already experiencing significant disadvantage and vulnerability. Their disability funding should not be used to fill gaps in other government systems.
When these young people transition into adulthood, they may have fewer supports available because their NDIS funding has been used to address needs that should have been met elsewhere.
This is not a criticism of the individual children, families or workers involved. It is a systems issue. When different government systems do not meet their responsibilities, the cost is often shifted onto the NDIS and ultimately onto the person with disability.
If the Government wants to improve sustainability, these are the areas that require attention. Greater provider accountability, stronger auditing, clearer boundaries around government responsibilities and better oversight of how participant funds are used would create genuine savings without reducing essential supports.
Psychosocial disability supports matter
I am deeply concerned about proposed changes affecting psychosocial disability supports.
As an Accredited Mental Health Social Worker, I see every day how disability and mental health interact. The two cannot be separated neatly, particularly for people whose disability affects their ability to function, maintain employment, engage with services and participate in their communities.
Many of the people I support live with autism, ADHD, complex PTSD and other significant disabilities that have a substantial impact on their daily lives.
The experience of living with disability in systems that are difficult to understand, and access can have a significant impact on a person’s mental health.
Reducing psychosocial disability supports will not remove people’s needs. It will mean those needs are more likely to present elsewhere, often through emergency departments, public mental health services, hospitals, homelessness services, housing services, child protection and justice systems.
Medicare mental health treatment plans cannot simply replace disability supports.
While psychological therapy is important and valuable, many people living with disability cannot afford private mental health gap fees. People who are already financially disadvantaged because of their disability are often the least able to access services that require additional out-of pocket costs.
When people cannot access appropriate support early, their needs often become more complex and more expensive to address later.
Access to diagnosis and assessment remains a significant barrier
Through my professional work, I regularly meet adults who have spent decades struggling with employment, relationships, mental health and everyday functioning without understanding why.
Many later discover that they are autistic or have another neurodevelopmental difference that helps explain the difficulties they have experienced throughout their lives.
The issue is not that people do not want support. The issue is that accessing the assessments required to understand their needs and access appropriate supports can be financially out of reach.
A comprehensive assessment can cost thousands of dollars. Functional capacity assessments can cost another thousand more.
For many people, particularly those who are already unable to work or are living with significant financial hardship, these costs are simply not manageable.
This creates a situation where access to support can depend not only on the impact of a person’s disability, but also on whether they can afford to prove that disability and its impact on their functioning.
There needs to be greater investment in accessible assessment pathways and broader recognition of neurodiversity across our social systems, so people are identified and supported earlier, rather than waiting until they reach crisis point.
Recommendations
I respectfully ask that the Government consider the following:
Protect essential supports – including community access - for people living with psychosocial disability and other significant disabilities. Improve transition planning for young people leaving school, including ensuring young people are identified for supports such as School Leaver Employment Supports before they exit education. Reduce delays in processing changes of circumstances so people are not left without appropriate supports while waiting for decisions. Recognise that families cannot provide unlimited unpaid care and that informal supports should not be relied upon as a replacement for funded disability supports. Strengthen provider accountability, auditing and reporting requirements so participant funding is being used effectively and delivering meaningful outcomes. Ensure government departments meet their own responsibilities and do not rely on NDIS participant funding to address gaps in other systems. Improve access to diagnostic and functional assessments. Ensure participants have flexibility to access supports that genuinely improve their independence, participation and quality of life.
The NDIS is an investment in Australians with disability. When people receive appropriate supports, they are more likely to participate in their communities, pursue employment, maintain relationships and live meaningful lives. So are their caregivers.
When supports are delayed, reduced or removed, the need does not disappear. Instead, people are more likely to experience greater difficulties and require more intensive support from other systems later.
I ask that this submission be considered not only as the perspective of a mental health professional, but also as the lived experience of a mother trying to build a future for her son.
My son wants to work. He wants independence. He wants to participate in the community.
He is not asking for someone to do everything for him. He is asking for the support that allows him to learn how to do things for himself.
At the moment, I am writing this submission on his behalf as well as mine, because his disability makes navigating processes like this incredibly difficult.
If he had appropriate disability supports, including assistance with communication, advocacy and navigating complex systems, he could have been supported to participate in writing his own submission, which is exactly the issue. The need for support is not a failure of the person with disability. It is the reason those supports exist.
I ask that the Government consider the impact of these changes not only in terms of budgets and systems, but in terms of the actual people whose lives will be affected.
Please ensure that efforts to improve sustainability do not come at the expense of the people the NDIS was created to support.