National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1069
Submission to the Senate Community Affairs Committee Inquiry into the National Disability Insurance Scheme Amendment (Future Generation Bill)
Location: Queensland Role: Parent and primary carer
Introduction
I am a parent of a 7-year-old boy with a diagnosis of Level 2 Autism and ADHD. He also presents with significant traits consistent with ARFID and OCD, although these are not yet formally diagnosed.
I write to express serious concern regarding the proposed changes under the NDIS Future Generation Bill, particularly those relating to narrowing supports, redefining what is considered reasonable and necessary, and shifting responsibility away from the NDIS under the concept of “foundational supports” and “everyday living costs.”
While the bill aims to improve sustainability of the scheme, I am concerned that it does so at the expense of children like my son and families like ours, who rely on these supports to remain functional, employed, and mentally well.
Misrepresentation of “Mild to Moderate” Autism
My son may present outwardly as “mild to moderate,” but this label fails to capture the true impact of his disability.
The most significant impacts occur at home, not in clinical or educational settings.
From the age of 4, my son has engaged in self-harm behaviours when overwhelmed, including:
• Nail digging
• Biting
• Head banging against walls, floors, and objects
These behaviours are ongoing and serious. They are not indicative of a mild condition.
The bill’s direction toward tighter definitions and boundaries risks excluding children who present well in structured environments but experience severe functional impairment in daily life.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1069
Masking and Emerging Social Exclusion
My son has historically been able to mask some of his differences in school. However, this ability is declining as he grows older.
As a result, he is increasingly:
• Identified as “different” by peers
• Socially excluded
• Bullied and physically targeted
The bill’s movement away from funding supports that fall under “social and community participation” is deeply concerning.
Without structured support, his ability to:
• Build friendships
• Learn social skills
• Safely navigate community environments
will be significantly reduced, worsening long-term mental health outcomes.
Reliance on Routine and Functional Support Needs
My son is extremely rigid in his routines. Deviation from these routines leads to severe dysregulation and self-harm behaviours.
Maintaining these routines requires:
• High levels of supervision
• Emotional regulation support
• Time and consistency every day
After a full workday, this creates an unsustainable load for our family.
The limited support work currently funded (3 hours, twice per week) plays a critical role in:
• Maintaining my son’s routines
• Reducing parental burnout
• Allowing us to complete basic household tasks
However, under his current plan:
• Support work is already scheduled to reduce
• It will be completely removed in the second year
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1069
The direction of this bill suggests that supports like this may become even harder to justify or access in the future.
Concerns Regarding “Foundational Supports” and Cost Shifting
The bill proposes greater reliance on systems outside the NDIS (e.g. community or “foundational” supports).
In practice, these supports:
• Are not currently available at the level required
• Do not offer the individualised care my son needs
• Cannot replace NDIS-funded therapies and support work
We have already experienced cost-shifting under “parental responsibility.” For example:
• Travel costs for my son’s Occupational Therapist to attend school-based sessions were denied
• This was despite clinical justification and inclusion in the NDIS pricing framework
This kind of decision-making increases financial and emotional strain on families and suggests a broader trend that this bill may accelerate.
Economic and Workforce Impacts
I have already been forced to leave a 15-year career in finance due to my son’s care needs. I now work part-time in community services, but even this is becoming unsustainable.
If supports are reduced further under this bill:
• I will likely have to leave the workforce entirely
This will result in:
• Loss of tax contributions
• Increased reliance on government income support
• Financial instability, including potential loss of our family home
The bill’s focus on cost containment fails to consider the broader economic consequences of reducing family supports.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1069
Mental Health Impacts on Our Family
Without adequate support:
• I will experience increased burnout and require more intensive mental health support
• I may need to apply for my own NDIS plan due to functional impact
• My husband will face increased pressure as the sole income provider and may also require mental health support
This contradicts the bill’s intent to reduce long-term system pressure.
Impact on My Son and Future System Costs
If access to supports is reduced:
My son will likely experience:
• Regression in behaviour
• Increased self-harm
• Greater social isolation
• Worsening mental health
This will result in increased reliance on:
• Medicare services
• Hospital and crisis interventions
Reducing early intervention and daily support does not eliminate costs—it delays and amplifies them.
Key Concerns with the Bill
I respectfully highlight the following concerns:
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Narrowing of funded supports risks excluding essential services like support work and social participation
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Over-reliance on “foundational supports” that do not yet exist at scale
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Increased classification of supports as “parental responsibility”
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Failure to recognise invisible and home-based disability impacts
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Disproportionate impact on families already balancing work and care responsibilities
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1069
Conclusion
The NDIS Future Generation Bill seeks to ensure sustainability, but in doing so risks shifting burden onto families, the healthcare system, and the broader economy.
For families like mine, NDIS supports are not optional extras. They are essential to:
• Keeping our child safe
• Maintaining family stability
• Enabling workforce participation
Without these supports, the consequences will be far-reaching—not only for our family, but for government systems more broadly.
I urge the Committee to ensure that changes under this bill do not reduce access to essential, preventative supports, particularly for children whose needs may not always be visible but are nonetheless significant.