Submission 739
Submission to the Senate Inquiry into the
NDIS Amendment Bill (Securing the NDIS
for Future Generations)
Introduction
Thank you for the opportunity to provide a submission to the Senate Inquiry into the NDIS Amendment Bill (Securing the NDIS for Future Generations).
I make this submission from three perspectives: as the Director of a registered NDIS provider, as a Behaviour Support Practitioner and disability professional with over 16 years of experience, and as the grandmother of an eight-year-old child with Autism Spectrum Disorder (ASD).
Throughout my career I have supported more than 500 participants across a range of disabilities and support needs. I have worked as a Disability Support Worker, Team Leader, Support Coordinator, Director of a disability service, and Behaviour Support Practitioner. These roles have provided me with extensive experience in understanding the practical impact that NDIS policies and funding decisions have on participants, families, carers and service providers.
My concerns about the proposed amendments are informed not only by my professional experience, but also by my family’s lived experience of attempting to access appropriate support for my grandson, who has ASD.
While I recognise the importance of ensuring the long-term sustainability of the NDIS, I am deeply concerned that several aspects of the proposed reforms may unintentionally reduce support for people with disability, increase pressure on unpaid carers, and create barriers for participants with permanent and lifelong disabilities.
The Importance of Early and Appropriate Supports
My grandson is eight years old and has Autism Spectrum Disorder, a permanent disability for which there is currently no cure.
Despite his diagnosis and significant support needs, he has not been approved for meaningful NDIS-funded supports. The only supports approved have been funding for a plan manager and incontinence products for a twelve-month period.
His mother is a sole parent who experiences significant challenges managing his emotional and behavioural needs. She has struggled to maintain employment because of frequent emotional outbursts at school and ongoing concerns about his wellbeing. She has been
Submission 739
waiting for approval for a School Support Officer and has had to independently seek counselling supports for her son.
She experiences extreme stress, anxiety, exhaustion and social isolation due to her caring responsibilities. The family has reached a point where support is desperately needed, yet the system has not provided the assistance required to prevent crisis.
At present, my grandson receives Occupational Therapy support through services available at his school because the NDIS has not approved this support. While we are grateful for any assistance available, school-based supports alone are not sufficient to meet his ongoing developmental and behavioural needs.
This experience highlights an important concern: many families are already struggling to access support under the current system. Any legislative changes that further restrict access to reasonable and necessary supports may worsen outcomes for children and families who are already under considerable pressure.
Concern 1: Greater Expectations on Unpaid Carers
One of my strongest concerns is the increasing expectation that families and unpaid carers will fill gaps where disability supports are reduced or unavailable.
Families already provide extraordinary levels of care. In many cases, they do so at the expense of their own physical health, mental health, employment opportunities and social participation.
What many people without lived experience of disability may not realise is that carer burnout is a very real and serious issue. When carers become exhausted, overwhelmed or unable to continue in their role, the impact extends far beyond the individual carer. It affects the participant, siblings, extended family members, workplaces, schools and the broader community.
My grandson’s mother is a clear example of this reality. As a sole parent, she carries the responsibility of managing his daily care, behavioural challenges, education needs and emotional wellbeing with very limited formal support. The ongoing stress has significantly affected her ability to maintain employment and participate in community life.
The proposed reforms must not assume that families have unlimited capacity to provide care. Carers require support, not additional responsibilities.
Concern 2: Changes to Reasonable and Necessary
Supports
The concept of “reasonable and necessary” supports has been fundamental to ensuring participants can access services that improve their quality of life and promote independence.
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I am concerned that changes to this principle may result in narrower interpretations that restrict access to supports that are essential for daily functioning and community participation.
In my professional experience, supports such as Occupational Therapy, Speech Therapy, Psychology, Behaviour Support and support workers often prevent crises from developing. These supports are not luxuries. They are critical interventions that improve communication, emotional regulation, social participation, safety and independence.
Removing or restricting these supports may create greater long-term costs for participants, families and government systems through increased hospital admissions, mental health presentations, family breakdown and social isolation.
The NDIS should continue to recognise that quality of life is an important outcome, not merely basic survival.
Concern 3: Reduced Funding for Social and Community
Participation
Community participation is one of the most valuable aspects of the NDIS.
Over many years I have witnessed participants who were previously isolated become active members of their communities through appropriate support.
One participant with Multiple Sclerosis (MS) was approved for an electric wheelchair through the NDIS. This support transformed the participant’s ability to engage in community life. The participant was able to attend the local club, participate in social activities and maintain important community connections.
Without this support, the participant’s independence, wellbeing and quality of life would have been significantly reduced.
MS is a progressive and degenerative condition. There is currently no cure. Participants living with conditions such as MS should not be expected to continually justify supports that clearly enable participation and maintain dignity.
Reducing funding for social and community participation may appear to be a financial saving on paper, but the practical result is often increased loneliness, declining mental health, reduced independence and poorer health outcomes.
Community participation should remain a protected and valued component of NDIS plans.
Concern 4: Requirement to Exhaust All Treatments
I am particularly concerned about any expectation that participants must demonstrate they have exhausted all treatments before receiving supports.
Submission 739
For many disabilities, including Autism Spectrum Disorder and Multiple Sclerosis, there is no cure.
Requiring participants to continually pursue additional treatments before accessing support creates unnecessary stress and delays. It also risks shifting the focus away from improving quality of life and towards repeatedly proving disability.
People with permanent disabilities should not be disadvantaged because a cure does not exist.
The NDIS was established to provide supports that assist people to live meaningful lives, not to require endless evidence gathering or participation in treatments that may have limited benefit.
Participants with lifelong conditions should be able to access supports based on their functional needs rather than being repeatedly required to demonstrate that every possible intervention has been attempted.
Concern 5: Functional Capacity Assessments
Functional capacity assessments can be valuable when used appropriately. However, I am concerned that they may become overly relied upon as a gatekeeping mechanism.
A single assessment cannot always capture the complexity of a participant’s daily life, particularly for individuals whose presentation varies across environments and situations.
Many participants experience fluctuating conditions, masking behaviours, anxiety or communication difficulties that may not be fully evident during a formal assessment.
Assessments should inform decision-making, but they should not override the evidence provided by treating professionals, carers, support coordinators and others who understand the participant’s day-to-day challenges.
A person’s eligibility and support needs should be determined through a holistic process that recognises lived experience and professional evidence.
Impact of Funding Reductions on Participants and
Families
Throughout my career I have seen the difference that appropriate supports can make.
Participants who receive suitable therapy, behaviour support and community access funding often achieve improved independence, reduced isolation and better mental health outcomes.
Conversely, I have also witnessed situations where support reductions have caused significant harm.
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One participant experienced the removal of psychology funding when their plan was renewed. Following this change, the participant’s mental health deteriorated and behaviours of concern increased significantly.
The reduction in support had serious consequences for the participant’s wellbeing and stability. Ultimately, services were ceased, resulting in further disruption and disadvantage.
This experience demonstrates how funding decisions can have profound real-world consequences that extend beyond administrative processes.
Recommendations
I respectfully recommend that the Senate Committee consider the following safeguards:
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Protect funding for social and community participation supports that reduce isolation and promote inclusion.
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Recognise carer burnout as a significant issue and ensure policy settings do not increase expectations on unpaid family carers.
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Maintain funding access for participants with permanent disabilities such as Autism Spectrum Disorder and Multiple Sclerosis where there is no cure and support needs are ongoing.
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Ensure participants are not repeatedly required to prove permanent disabilities through unnecessary reassessments and evidence gathering.
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Protect access to allied health supports including Occupational Therapy, Speech Therapy, Psychology and Behaviour Support.
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Ensure functional capacity assessments are only one component of decision-making and do not override professional and lived experience evidence.
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Guarantee meaningful human review of decisions and prevent overreliance on automated decision-making systems.
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Ensure participants are not required to exhaust every possible treatment before receiving disability supports.
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Preserve the original intent of the NDIS by focusing on participant wellbeing, independence, dignity and inclusion.
Conclusion
The NDIS has transformed the lives of many Australians with disability and their families. In my professional career supporting more than 500 participants, I have seen first-hand the positive impact that appropriate supports can have on independence, mental health, community participation and quality of life.
At the same time, I have witnessed the significant harm that occurs when supports are reduced, delayed or denied.
As both a disability professional and the grandmother of a child with ASD, I urge the Senate Committee to carefully consider the practical consequences of these reforms on participants and their families.
Submission 739
The long-term sustainability of the NDIS is important, but sustainability must not come at the cost of dignity, inclusion and essential supports for people with disability.
I respectfully ask the Committee to ensure that any legislative changes preserve access to necessary supports, recognise the realities of carer burnout, protect participants with permanent disabilities, and maintain the core principles upon which the NDIS was established.
Thank you for considering this submission.