Submission 523
Dear Committee,
My name is . I am the mother of a 15½-year-old son who is diagnosed with
Autism and Mild Intellectual Disability. -
I am writing this submission from a personal, lived experience perspective as a parent.
Since receiving an NDIS plan for my son in approximately 2018, I have to say it has been a game changer.
Yes, there are challenges that come with a large system like the NDIA, and I do believe that some reform is necessary—no doubt about that.
However, I am deeply concerned about the proposed reforms, particularly around cuts to social and community participation, and the real risks this creates, especially as young people with disability move through adolescence into adulthood.
I strongly urge the Committee to reconsider any reductions to social and community participation supports, particularly for young people, and to ensure reforms protect the developmental, social, and long-term outcomes of participants.
Concerns
The role of support during adolescence
For my son, support workers during adolescence are not just “supports”, they play a pivotal role.
They help:
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Build skills
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Support emotional regulation during a stage where conflict and change are expected
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Act as mentors
Submission 523
- Provide a broader “scaffolding” or village of support that helps young people thrive in the community
This stage of life requires intentional, layered support (reducing will place high risk of isolation) - it is hard enough already!
A simple example from our experience: There have been times where my son has refused to attend school or activities due to anxiety or frustration. As his parent, this can quickly escalate into conflict. Having a consistent support worker who understands him and can step in—take him out for a walk, redirect him, or just be a calm presence—has made a huge difference.
Over time, this has helped him build trust, emotional regulation skills, and confidence to re-engage. Without that support, those situations would often end in complete withdrawal or escalation, and it would set him back socially and emotionally.
Building towards mainstream inclusion takes time
I fully agree that strengthening mainstream supports and inclusion is critical.
However, we cannot expect young people with disability to transition into mainstream environments without first building the foundations.
Often this means:
- The right match of support worker skill sets with continuity
- One-on-one or small group support
- Gradual confidence-building These are the building blocks that make broader participation possible.
Without them, participation is simply not achievable.
Impact on families
As parents, we need to be part of this conversation.
Submission 523
I work and value being able to participate economically. It’s important to me, and it’s something I want my son to see and value as he grows—whether that is through work or volunteering.
But the reality is:
- We can only stretch ourselves so far
- As parents, we are also ageing
- Without adequate support, the pressure becomes unsustainable To be very honest, if social and community participation supports are reduced, I would be at risk of needing to leave my job just to manage my son’s needs and reduce the risk of him becoming isolated.
Risks of reducing social and community participation supports
Cuts in this area will have very real impacts, including:
- Increased isolation for young people
- Reduced opportunities to build independence
- Challenges in transitioning to work placements, apprenticeships, or community roles
Many young people need interim and structured support as they transition into these pathways. Removing this support too early sets them up to fail.
Flexibility in funding and planning over time
Another key concern I have is how funding is managed across different years.
As any parent knows, a child’s needs are not consistent year to year. There are times where a large portion of funding is needed—for example, during more challenging periods or key developmental stages—and other times where supports are naturally reduced because things are more stable.
The current system creates pressure to “use” funding within a plan period, which can unintentionally encourage unnecessary spending rather than thoughtful, needs-based support.
I strongly feel that families should not be penalised in years where less funding is used.
Submission 523
We need a system that:
- Recognises that needs fluctuate over time
- Allows families to scale supports up and down without disadvantage
- Makes it easy to pause and re-engage supports when needed
- Retains continuity—so we are not starting from scratch each time, and records, history, and relationships are preserved
There is also a broader issue where the expectation to spend has contributed to a culture of spending within the system.
From my experience, parents need more support and guidance to understand how to use funding effectively and appropriately. There is a real need for greater transparency and accountability in parts of the allied health sector, particularly in private services, where therapy can sometimes be structured in a way that maximises billing rather than genuinely responding to a child’s needs.
Suggested strategies
From a parent perspective, I would suggest:
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Strengthen skill-based support work o Increase focus on specialised skill sets (e.g. sport coaching, creative arts, mentoring)
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Improve access to mainstream activities o Many community programs (e.g. basketball) have rigid age or participation structures that unintentionally exclude young people with disability
o There needs to be more flexibility and safety around inclusion for our children but scaffolding needs to happen prior
- Build localised support networks o Develop workers or roles that act as connectors across NDIS and mainstream services
o Families need guidance to navigate both systems effectively
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Stronger partnership with the Department of Education o There is a need to move beyond training and ensure inclusion practices are actually implemented, particularly in secondary schools
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Maintain social and community participation supports during transition periods
Submission 523
o Especially when young people are moving into employment, training, or community role
Closing
The NDIS has made a profound difference in our lives, and I genuinely want to see it continue in a way that supports people to thrive, not just existing or in survival mode - it takes a toll.
Reform is needed, but it must be done carefully to avoid creating additional barriers for young people and families.
I ask that you carefully consider the impacts of reducing social and community participation supports, particularly during critical life stages like adolescence and transition to adulthood.
Thank you for the opportunity to share my perspective.