Submission to the Senate Community Affairs Legislation Committee

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submitted by:

Executive Summary

I support the Government’s objective of ensuring the long-term sustainability of the National Disability Insurance Scheme.

My submission does not oppose reform. Rather, it seeks to ensure that the proposed reforms include appropriate safeguards for participants with genuine and permanent disabilities.

My family’s experience demonstrates three areas where the Bill should be strengthened:

• Functional Capacity Assessments commissioned by the NDIA should not be disregarded without detailed written reasons why they have decided against it.
• The proposed requirement to undertake “appropriate treatment” should be objectively defined in legislation.
• Community participation supports should not be reduced before equivalent Foundational Supports are fully operational.

I respectfully ask the Committee to amend the Bill to improve transparency, accountability and fairness while preserving the Government’s objective of a financially sustainable NDIS.

Introduction

My name is . I am the husband of , who is an NDIS participant in her mid-thirties living with Cerebral Palsy (CP) and Functional Neurological Disorder (FND). We have two young children.

Submission Regarding Proposed Amendments to the NDIS Act

works full-time in communications. Despite her significant physical disabilities, she remains committed to working, contributing to society, and raising our family. I am her husband and her only consistent informal support. There are no other family members available to assist with her day-to-day care.

I am making this submission because I am deeply concerned that the proposed amendments to the NDIS Act—particularly the introduction of a new standardised functional capacity assessment and the proposed reduction in community and social participation supports—will disproportionately affect participants like my wife, whose disabilities are genuine, permanent in their functional impact, and already only partially recognised by the NDIA.

This submission is based entirely on our family’s lived experience.

I support measures that improve the long-term sustainability of the NDIS, strengthen integrity, reduce fraud and ensure funding is directed to Australians who genuinely require disability supports. My concerns are not about reform itself, but about ensuring the legislation contains sufficient safeguards to protect participants with legitimate and permanent disabilities from unintended consequences.

Our experience before the NDIS

Before entering the NDIS, every aspect of our lives revolved around ’s physical limitations.

She struggled to move around our own home. She often has to crawl on her hands and knees to reach the bathroom because she can not safely walk. She showers sitting on the floor because standing alone is unsafe in the shower. She can not safely use escalators or travelators, walk on sloped or uneven ground, she can not independently use public transport, and can not travel to and attend her workplace unless I’m available to transport her. My employment opportunities were/are restricted to jobs that were in close proximity to hers for this reason.

Simple activities that many Australians take for granted—shopping, visiting friends, attending family events, participating in the community—are often impossible unless I am available to provide physical assistance.

The effect is not only physical. It is socially isolating and emotionally exhausting.

Pregnancy and diagnosis

In 2021, became pregnant with our first child.

During her pregnancy her physical condition deteriorated dramatically. She became largely immobile, experienced repeated collapses and began suffering seizure-like episodes.

In January 2024 she was diagnosed with Functional Neurological Disorder (FND). Following this diagnosis, she applied for NDIS support.

Our experience with the NDIA

Initially, was found ineligible for both cerebral palsy and FND.

Following review, the NDIA accepted cerebral palsy but continued to refuse recognition of FND.

Importantly, the NDIA acknowledged that had been diagnosed with FND. However, it determined that the condition should not be recognised within her NDIS plan because, in its view, she had not “fully explored” all available treatment options.

When we sought clarification about what additional treatments were required, no definitive list or objective standard could be provided.

This experience is directly relevant to the amendments currently before the Senate.

Functional Capacity Assessment

The NDIA funded an extensive Functional Capacity Assessment completed by qualified allied health professionals.

A quoted example of the assessment findings advised:

“Total average disability score: 4.9

Discussion: ’s total average disability score indicates an extreme level of difficulty experienced due to her health conditions. is at high and increasing risk of social isolation, further functional decline, and reducing quality of life without urgent support increases for maximising safety and independence. NDIS plan adjustments for increased support worker funding, equipment provision, home modifications, ongoing allied health involvement, and recognition of FND in addition to CP is recommended.“​ ​ The assessment’s concluding summary clearly outlined the extent to which ’s conditions affected her functional capacity: ​ ​ “SUMMARY

 has been overwhelmed by the functional decline she has experienced, with caregiver burnout

evident for as well. is experiencing frequent falls, social isolation, relationship strain, large amounts of time home-bound, and overall difficulties coping. requires urgent and significant increases to support adequate allied health input, equipment provision, home modifications, support worker input, cleaning services, and gardening services, for ensuring improved safety, functioning, and goal achievement. is at significant risk of impacts extending to reduce her ability to maintain paid employment. has strongly expressed her priority of returning to office based work in Melbourne, two days per week, as soon as possible to support maintenance of her paid employment. While

Cerebral Palsy and Functional Neurological Disorder

“Cerebral palsy continues to impact ’s overall function, it is also recommended that Functional Neurological Disorder is recognised as an additional diagnosis to provide holistic support.”

That assessment concluded that, in addition to assistive technology and other disability supports, required approximately 35 hours of support each week to safely:

   ●​  travel independently to and from work;
   ●​ access the community;
   ●​  attend medical appointments;
   ●​  participate in everyday activities;
   ●​  maintain independence.

Despite commissioning and paying for this assessment, the NDIA approved only 14 hours per week, allocated as 10 hours during the working week, 2 hours on Saturday and 2 hours on Sunday.

The explanation provided was that because the NDIA did not recognise FND, it considered itself unable to determine which aspects of ’s reduced functional capacity arose from Cerebral Palsy and which arose from FND.

In other words, although the Functional Capacity Assessment identified her actual support needs, the NDIA reduced those supports because one of her diagnosed conditions was not recognised and the symptoms of FND and cerebral palsy overlap and it’s impossible to split the symptoms between the two conditions.

In practical terms, the NDIA accepted the evidence sufficiently to commission and rely upon the Functional Capacity Assessment, yet simultaneously discounted the level of support recommended within that same assessment. This experience causes me significant concern about proposals to further standardise functional capacity assessments without corresponding safeguards regarding how those assessments are applied.

I am deeply concerned about proposals to further redefine or standardise assessments of “functional capacity.”

If the NDIA can already disregard recommendations contained within Functional Capacity Assessments that it has itself commissioned, I fear that introducing a new statutory definition of functional capacity without stronger safeguards will only increase the scope for participants to receive less support than independent clinical evidence recommends.

Functional Neurological Disorder and “appropriate treatment”

The Bill proposes that participants may need to demonstrate that appropriate treatment has been explored before meeting access requirements.

Our family’s experience highlights why this approach requires much stronger safeguards.

  attended one of only two specialist Functional Neurological Disorder clinics in Victoria through the

public health system.

This treatment was not funded through the NDIS.

The program was originally intended to run for eight weeks.

Instead, she has remained in treatment for almost eighteen months.

Her treating clinicians have advised that she has reached a functional plateau. Although she has experienced modest improvements through ongoing physiotherapy, occupational therapy and clinical psychiatry, her treating team considers that all appropriate treatment options have now been exhausted and she is transitioning to community-based management.

Despite this, the NDIA continues not to recognise FND within her plan.

Our experience raises an important question for the Committee:

How can participants demonstrate that they have explored all appropriate treatment if neither the legislation nor the NDIA defines what “all appropriate treatment” actually means?

Without objective criteria, participants are left attempting to satisfy an undefined threshold that appears capable of changing over time.

Community participation supports

The proposed reduction in community participation supports concerns me enormously.

The NDIA approved only 14 hours per week, allocated as 10 hours during the working week, 2 hours on Saturday and 2 hours on Sunday.

Those hours are already carefully rationed. They allow only limited travel, attendance at essential appointments and occasional community participation. If community participation supports were reduced further, there would be insufficient assistance for to consistently travel to work, attend medical appointments, collect our children from childcare, attend school activities, maintain friendships or participate in community life.

Community participation is not a luxury. It is fundamental to maintaining employment, independence, mental wellbeing and family life.

If future reforms reduce those supports by approximately 50%, this would leave her with around 7 hours each week.

7 hours would not even provide sufficient support for her to travel safely to work while the organisation’s office is 1 to 1.5 hours away from our home each way by car, longer if using public transport.

It would leave no capacity to:

• attend medical appointments;
• collect our children from childcare;
• participate in school activities;
• attend important family events;
• maintain friendships;
• participate in community groups;
• attend occasional recreational activities such as a pottery class, museum visit or book club.

Community participation is not a luxury.

For people with significant physical disability, community participation is often the mechanism through which employment, independence and social inclusion are achieved.

For my wife, community participation is what enables employment. Employment enables financial independence. Financial independence reduces reliance on government supports. Reducing community participation supports may therefore undermine one of the central objectives of the NDIS—to maximise independence and economic participation.

For people like my wife, it is the difference between participating in Australian society and living in isolation.

Impact on Employment, Parenting and Family Life

  continues to work full time despite significant disability. The supports she receives enable her to

contribute economically while remaining an active parent.

Before receiving NDIS supports, my wife’s mental health had deteriorated significantly.

Our children would ask heartbreaking questions including:

• “Are you going to die, Mummy?”
• “Why is Mummy broken?”
• “Why can’t Mummy take us?”

These are not questions any parent wants to hear.

Whilst she has been able to continue working from home only on a flexible working arrangement, this is not always an option and not every employer offers this which significantly reduces her employment opportunities.

• She has attended medical appointments more consistently without requiring me to take time off work.

• She has occasionally participated in community activities.

However, because her plan is already significantly below the recommendations contained within her Functional Capacity Assessment, every support hour must be carefully rationed.

Sometimes she saves support for weeks or months simply so she can spend one afternoon at a museum with a friend or have dinner in the city.

That is not excessive use of the Scheme.

It is careful budgeting simply to experience ordinary aspects of life that many Australians enjoy every day. Since receiving even her limited NDIS support, ’s mental health has improved as a result of the abovementioned basic needs being able to be somewhat met.

No parent wants their children to grow up believing that disability means isolation. The limited support currently receives has allowed our children to see their mother attend work, participate in family outings and remain engaged in their lives. Those moments have enormous value—not only for , but for our children and our family as a whole.

Concerns regarding the proposed reforms

Based on our experience, I respectfully submit that the Committee should carefully consider whether the proposed amendments provide sufficient safeguards against inconsistent decision-making by the NDIA.

My concerns include:

     1.​ the absence of a clearly defined and transparent standard for determining whether a participant has undertaken "appropriate treatment";
     2.​ the potential for a standardised functional capacity assessment to override or diminish detailed evidence from treating clinicians and independent allied health professionals;
     3.​ reducing community participation supports before equivalent foundational supports are available in practice;
     4.​ allowing significant policy changes to occur through legislative rules rather than primary legislation debated by Parliament; and
     5.​ the absence of stronger accountability where the NDIA departs from recommendations contained in assessments that it has commissioned and funded.

Recommendations

The following recommendations are offered in a constructive spirit. They support the long-term sustainability of the NDIS while proposing safeguards that would improve fairness, transparency and confidence in NDIA decision-making.

I respectfully ask the Committee to recommend that:

• The definition and assessment of functional capacity not be changed until the assessment methodology has been independently validated, publicly released and subject to meaningful consultation with people with disability and clinicians.

• The legislation include an objective definition of what constitutes “appropriate treatment” and require the NDIA to identify any treatments it considers outstanding before refusing recognition of a condition on that basis.

• Community participation funding not be reduced unless equivalent foundational supports are fully operational, adequately funded and demonstrated to provide comparable outcomes.

• Where the NDIA commissions a Functional Capacity Assessment, its recommendations should ordinarily be accepted unless the NDIA can demonstrate, by reference to objective evidence and the legislative criteria, why a different conclusion is justified.

• Where the NDIA approves substantially less support than recommended in an independent Functional Capacity Assessment that it has commissioned, it should be required to provide detailed written reasons explaining:

  • which recommendations have not been accepted;
  • the evidence relied upon;
  • how the decision aligns with the legislative criteria; and
  • what additional evidence, if any, could alter that decision.

• Where the NDIA determines that a participant has not undertaken “appropriate treatment”, it should be required to identify in writing the specific treatment it considers

Conclusion

This submission is not intended to resist necessary reform. Rather, it reflects my hope that Parliament will ensure the reforms strengthen—not diminish—the ability of Australians with significant disability to live independently, contribute to the workforce and participate in their communities.

My wife does not seek unnecessary supports. She works full-time despite profound physical disability. She contributes to the community. She raises our children.

She uses only the supports allocated to her and has consistently sought treatment to maximise her independence.

The NDIS was established to enable Australians with significant and permanent disabilities to participate in everyday life.

My concern is that these reforms, unless strengthened with clearer safeguards and greater accountability, risk moving the Scheme away from that purpose.

For families like ours, the consequences are not abstract policy questions.

They determine whether a person can work, parent their children, maintain relationships, participate in the community and live with dignity.

I respectfully ask the Committee to ensure that the pursuit of a sustainable NDIS does not come at the expense of Australians whose disabilities have already been independently assessed and whose capacity to work, parent and contribute to society depends upon receiving appropriate supports.

I thank the Committee for considering my submission.

Appendix A – Chronology of Events

  Date /                    Event                            Significance
  Period

 Prior to             lives with Cerebral Palsy,             Demonstrates long-standing and
2021        experiencing significant physical disability    permanent functional impairment
               affecting mobility, personal care, transport     together with a commitment to
           and community participation. Despite these   employment and independence.
              challenges, she remains employed full-time
                 in communications.

2021           becomes pregnant with our first child.   Pregnancy significantly
                                                      exacerbates her physical
                                                                       disabilities and functional
                                                                     limitations.

2021–2023  Mobility deteriorates substantially.           Marks the onset of additional
             experiences frequent collapses, seizure-like   disability-related functional
            episodes and increasing loss of              impairment beyond her existing
            independence.                              Cerebral Palsy.

January              is formally diagnosed with Functional   Provides a clinical explanation for
2024        Neurological Disorder (FND).                her significant deterioration and
                                                               additional functional impairment.

February    Application submitted to the NDIS.          Seeks disability supports
2024                                                necessary to maintain
                                                     independence, employment and
                                                              family life.

 April 2024    Initial NDIS access decision declines         Demonstrates the initial barriers
              recognition of both Cerebral Palsy and       encountered in accessing the
              Functional Neurological Disorder.           Scheme.

July 2025   Following review, the NDIA accepts        's   Establishes the central issue
             Cerebral Palsy as the basis for eligibility but   underpinning this submission.
             continues not to recognise Functional
              Neurological Disorder. NDIA approves 7

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hours of support per week on an interim basis until the FCA is completed and a review of circumstances is submitted.

July 2025 The NDIA commissions and funds an Independent clinicians assess ’s actual functional support needs.

November Functional Capacity Assessment concludes Independent evidence identifies the level of support necessary to maintain employment, 2025 requires approximately 35 hours of support per week in addition to assistive technology and other medical and disability community participation and independence.

April 2026 NDIA approves 14 hours of weekly Establishes the central issue underpinning this submission. support, allocated as 10 hours during the working week, 2 hours on Saturday and 2 The NDIA funds substantially less support than recommended, explaining that it cannot distinguish the impact of Cerebral Palsy from Functional Neurological Disorder because FND is not recognised.

2024 – attends one of only two specialist Demonstrates sustained intensive engagement with treatment outside the NDIS and a commitment to maximising functional capacity. 2026 Functional Neurological Disorder clinics in Victoria through the public health system. The program was intended to run for eight weeks but continues for approximately eighteen months.

May 2026 Treating clinicians advise that has Highlights the inconsistency between the NDIA’s ongoing position regarding “appropriate” treatment and the opinion of treating specialists. reached a functional plateau. Although modest improvements have occurred through physiotherapy, occupational therapy and clinical psychiatry, all appropriate treatment options have now been exhausted and she is transitioning to community-based management.

Current

The NDIA continues not to recognise Functional neurological disorder despite additional evidence and review requests. remains employed full-time while relying on carefully rationed ndis supports that are significantly below the recommendations contained within the functional capacity assessment.

Appendix B – Key Evidence Considered

The views expressed in this submission are based on our family’s lived experience and are supported by medical, allied health and NDIA documentation accumulated over several years.

While these documents have not been attached to this submission, they are available and can be provided to the Committee if requested.

1. Functional Capacity Assessment (Commissioned by the NDIA) - November 2025

Purpose: Assessment of ’s functional capacity and support requirements.

Prepared by: Independent allied health professionals engaged through the NDIA.

Key findings include:

• Significant and permanent functional limitations affecting mobility, self-care, domestic activities, transport and community participation.
• Recommendation for approximately 35 hours of weekly support in addition to assistive technology and other medical and disability supports.
• Clinical opinion that these supports were necessary to enable safe employment, community participation, attendance at medical appointments and independent living.

This assessment forms the primary evidentiary basis for many of the concerns raised in this submission.

2. Cerebral Palsy Diagnosis

Medical evidence confirming ’s diagnosis of Cerebral Palsy and the resulting permanent physical impairment.

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This diagnosis ultimately formed the basis upon which the NDIA accepted ’s eligibility for the NDIS following review.

3. Functional Neurological Disorder Diagnosis

Medical evidence confirming ’s diagnosis of Functional Neurological Disorder (FND) in January 2024.

This diagnosis explains the significant deterioration in her functional capacity following pregnancy and is recognised by her treating medical practitioners.

Although acknowledged by the NDIA as a diagnosis, it has not been recognised for planning purposes despite additional evidence being provided.

4. Specialist Medical Reports

Reports from treating medical specialists documenting:

•     's diagnoses;
  

• progression of her disabilities;
• functional limitations;
• prognosis; and
• recommendations regarding ongoing management.

These reports consistently identify substantial physical impairment affecting everyday functioning.

5. Allied Health Reports

Reports prepared by treating allied health practitioners, including physiotherapists and occupational therapists.

These reports describe:

• mobility limitations;

• falls and collapses;
• community access restrictions;
• transport limitations;
• activities of daily living; and
• the practical support required to maintain independence.

6. Functional Neurological Disorder Clinic Records

Clinical records relating to ’s participation in one of only two specialist Functional Neurological Disorder clinics operating within Victoria’s public health system.

These records demonstrate that:

• the original eight-week treatment program extended to approximately eighteen months;
• consistently participated in recommended treatment;
• Minor improvements occurred through physiotherapy, occupational therapy and clinical psychiatry; and
• her treating clinicians have now concluded that she has reached a functional plateau and exhausted appropriate treatment options before transitioning her to community-based management.

These records are directly relevant to concerns raised regarding the proposed legislative concept of “appropriate treatment”.

7. NDIA Access and Planning Decisions

Copies of NDIA decisions, including:

• the original access decision;
• internal review outcome;
• planning decisions;
• reasons for recognising Cerebral Palsy but not Functional Neurological Disorder; and
• funding decisions approving substantially fewer supports than recommended by the Functional Capacity Assessment.

These documents demonstrate the practical operation of current NDIA decision-making processes.

8. Review and Correspondence with the NDIA

Correspondence exchanged with the NDIA following planning and review decisions.

This material documents ongoing efforts to:

• provide additional medical evidence;
• seek recognition of Functional Neurological Disorder;
• clarify what additional treatment the NDIA considered necessary; and
• understand the reasons for the NDIA’s decisions.

9. Employment Evidence

Evidence demonstrating ’s continued full-time employment despite significant disability.

This evidence supports the submission’s central proposition that appropriately funded disability supports enable people with disability to remain active participants in the workforce and reduce long-term dependence on government assistance.

Evidentiary Summary

Taken collectively, this evidence demonstrates that:

•   has multiple clinically diagnosed neurological conditions resulting in significant and
  

  permanent physical disability.
• Independent clinicians—including practitioners engaged through the NDIA—have assessed her functional support needs as substantially greater than those ultimately funded.
• She has consistently participated in recommended medical treatment and rehabilitation over an extended period.
• She continues to work full-time despite profound physical disability.
• The concerns raised in this submission arise from direct experience of existing NDIA decision-making processes and are relevant to the safeguards currently being considered by the Parliament as part of the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.

This appendix is provided to demonstrate that the matters raised throughout this submission are supported by objective clinical evidence, independent functional assessments and NDIA documentation, rather than opinion alone.