Submission 2040

Submission – Senate Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Introduction

I am writing as both an NDIS participant living with Multiple Sclerosis (MS) and as the parent of a child with Autism Spectrum Disorder (ASD).

This submission reflects my personal experience of the NDIS and my concerns about how the proposed legislative changes may impact both my own future and my child’s development, safety, and long-term independence.

What the NDIS means to me and my family

The NDIS has been essential in enabling both myself and my child to maintain and build independence, functioning, and participation in everyday life.

For me, as someone living with MS, access to preventative supports, particularly allied health, has allowed me to maintain my functional capacity, delay disease progression, and remain active in my family and community. It has also enabled me to remain active in full time work.

For my child, access to capacity-building supports such as therapy and social participation has resulted in measurable and meaningful improvements in communication, emotional regulation, social engagement, and overall wellbeing, and will support his ability to enter the workforce in the future.

Without the NDIS, both of us would be significantly more reliant on crisis-based health systems and informal supports, with much poorer long-term outcomes.

Concerns about the proposed changes

1. Shift toward short-term cost reduction over long-term outcomes

The proposed reforms appear to prioritise reducing expenditure and controlling scheme growth.

My concern is that limiting access to preventative and capacity-building supports may reduce short- term costs but will increase long-term expenditure through:

• increased hospitalisations
• loss of functional capacity
• greater reliance on intensive supports
• higher long-term care needs

Preventative support is not optional; it is what prevents deterioration.

2. Changes to the definition of “permanence”

The proposed changes indicate that participants may be required to exhaust all available treatment options before being considered eligible or continuing to qualify for the NDIS.

This raises serious concerns for both MS and autism:

Submission 2040

• For MS: MS is progressive and unpredictable. Treatment does not eliminate disability; it only slows progression. Requiring “all treatments” to be exhausted misunderstands the nature of the condition and may delay or restrict necessary supports.

• For autism: Autism is lifelong. It is not something that can be “treated away”. Supports build skills; they do not remove the underlying condition.

Additionally, treatments may be technically “available” but:

• unaffordable
• geographically inaccessible
• unsuitable for the individual

This risks excluding people who still have genuine and significant support needs.

3. Over-reliance on functional capacity assessments

There appears to be increasing emphasis on functional assessments as a basis for determining eligibility and supports.

In my experience, these assessments:

• capture only a brief snapshot in time
• do not reflect fluctuations or cumulative fatigue
• do not account for the effort required to maintain functioning

Both MS and autism can involve:

• masking of difficulties
• fluctuating symptoms
• delayed consequences after exertion

As a result, individuals may appear “capable” during assessment while still requiring significant support to function safely and sustainably in daily life.

4. Risk of reduction in capacity-building and social supports

Capacity-building supports, especially therapies and social participation, have been critical for my child’s development.

The assumption that supports can be reduced once progress is made is deeply concerning. Progress:

• is not linear
• requires ongoing reinforcement
• can be lost if supports are withdrawn

Reducing these supports would likely result in:

Submission 2040

• regression in communication and emotional regulation

• increased social isolation

• greater long-term support needs

Social and community participation supports are not discretionary; they are essential for inclusion, mental health, and development.

Impacts on self-management and participant control

As a self-managed participant, flexibility has been central to establishing stable, effective supports.

The proposed changes raise concerns about:

• increased administrative burden

• reduced flexibility

• restrictions on provider choice

• risks to continuity of care

Disrupting established support arrangements can:

• undo years of progress

• destabilise therapeutic relationships

• increase stress for families

Choice and control are fundamental principles of the NDIS and should be protected.

Clarity and consultation

There is widespread concern in the community about a lack of clarity around how these changes will be implemented and what they will mean in practice.

Many participants and families do not feel the reforms have been clearly explained or adequately co- designed with those most affected.

Given the complexity and scale of these changes, meaningful consultation with participants is essential.

What these changes would mean for me and my family

If the proposed changes result in reduced access to supports, the likely consequences would include:

• decline in my functional capacity and increased progression of MS

• loss of independence and increased reliance on higher-cost services

• regression in my child’s development and increased future support needs

• reduced participation in education, community, and social environments

• increased mental health impacts and family stress

Submission 2040

These outcomes would not only affect our wellbeing but would likely increase long-term costs to the system.

Recommendations

I respectfully ask the Committee to consider:

• Maintaining access to preventative and capacity-building supports Recognise that these supports reduce long-term costs and improve outcomes.

• Ensuring the definition of “permanence” reflects real-world conditions Avoid requiring participants to exhaust unavailable, unaffordable, or inappropriate treatments.

• Limiting reliance on functional assessments as sole evidence Ensure decision-making considers longitudinal impact and lived experience.

• Protecting supports for children with developmental conditions Recognise that autism is lifelong and requires ongoing, evolving support.

• Safeguarding self-management and participant choice and control Preserve flexibility and continuity of care.

• Ensuring genuine consultation with people with disability and families Reforms should be co-designed with those directly affected.

Conclusion

The NDIS has enabled people like myself and my child to live with dignity, independence, and hope for the future.

I am deeply concerned that the proposed reforms risk undermining these outcomes by focusing too heavily on short-term cost containment without sufficient regard for long-term consequences.

I urge the Committee to ensure that the NDIS continues to support people with disability in a way that is sustainable, person-centred, and grounded in lived experience.