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Denied supports impacting carer's mental health and participant’s functional capacity (Family or carer experience)

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Submission to the Senate Standing Committee on Community Affairs regarding the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Date: May 28, 2026 Submitted by: redacted (Carer and Advocate)

Summary of Position

I strongly urge the Committee to oppose the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 in its current form. The Bill risks undermining the fundamental principles of the NDIS—choice, control, and individualised support—and will cause significant harm to participants and their families by weakening appeal rights, enabling essential support cuts, and potentially forcing hundreds of thousands of people off the Scheme before genuine alternatives are established.

Key Concerns Regarding the Proposed Amendments

Risk of Arbitrary Funding Reductions and Removal from the Scheme

The proposed amendments appear to grant the Minister broad powers to reduce funding across the Scheme without sufficient individual review. This is deeply concerning, as it shifts the focus from individual ‘reasonable and necessary’ needs to financial targets. If people are pushed out of the NDIS without real foundational supports available, their need for support will not cease. Instead, they will be shifted onto hospitals, homelessness services, mental health services, and crisis systems that are already over-burdened, causing further societal harm and ultimately increasing overall costs.

Weakening of Appeal Rights and Choice and Control

Any measure that weakens appeal rights or limits a participant’s choice and control over their supports fundamentally contradicts the NDIS’s core design. Maintaining genuine choice, control, and a robust right to appeal is essential to ensure plans are fit for purpose and genuinely reflective of a participant’s needs. The Scheme’s sustainability must not be achieved by cutting essential supports or sacrificing the safety and independence of people with disability.

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

Submission 1399

Inefficiency and Misdirected Focus

While sustainability is critical, the government should prioritise clearing up existing inefficiencies rather than cutting participant support. For example, the NDIS spent approximately $66 million in legal fees during the last financial year trying to prevent people from accessing services they qualified for. Of the cases that proceeded to a formal hearing, only 83 were found in favour of the NDIS. Addressing this substantial “integrity leakage” (which includes fraud, error, misuse, and non-compliance) and improving the scheme’s efficiency would save significant money and prevent a rise in unemployment among paid care workers.

Personal Case Study: The Family (NDIS Participant)

My personal experience as an unpaid carer highlights the existing challenges within the NDIA that the proposed Bill will exacerbate.

The Struggle for Access and Appropriate Funding

My daughter, was finally accepted onto the NDIS in December 2025, after three years of struggle, with an initial minimal plan. lives with Level 2 Autism, ADHD, Type 1 Diabetes, ARFID, and Stage 3 Renal disease, among other disabilities. In 2023, they were also diagnosed with Chronic Inflammatory Demyelinating Polyradicular Neuropathy (CIDP) and Functional Neurological Disorder (FND). These new neurological conditions have caused their world to shrink to medical appointments and resting to recover energy.

’s initial plan only provides 5 hours of social support and 5 hours of domestic assistance per week. Essential supports requested via internal review—including a wheelchair, physiotherapy, meal preparation, Support Coordination, and Supported Independent Living (SIL)—were denied. This denial occurred despite providing extensive supporting documentation from specialists and allied health workers confirming these supports are necessary, reasonable, and provide value for money.

Our ongoing struggle includes having supports denied due to administrative hurdles, such as being told an impairment had an ‘end date’ with no explanation, and having a request rejected because a neurologist’s form did not specifically name CIDP and FND, necessitating a new form submission, in spite of other documents by other Specialists and allied health staff referring to, and describing these conditions and how’s functional capacity has been affected

Impact on Carer and Family Stability

The lack of appropriate NDIS support means I have lived most of the time with since 2023 as an unpaid carer, providing transport, domestic work, cooking, shopping, and 24/7 monitoring for falls or seizures. This role has led to me losing my full-time remote job and being unable to socialise. Respite is unavailable due to’s age, and I recently presented to the hospital due to my mental health hitting “rock bottom”.

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

Submission 1399

The currently denied supports are not extras; they are vital to enabling to achieve safety, independence, study, work, and community life. The proposed cuts to the Scheme threaten the meagre services currently has, which terrifies me, as I do not know how either of us will cope with a further decline in support.

Recommendations

I urge the Committee to recommend the following changes to the Bill before it proceeds:

  • Protect Individualised Support and Choice: Introduce amendments that guarantee the principles of choice, control, and individualised support are legally protected from arbitrary administrative or Ministerial reduction.
  • Strengthen Appeal Rights: Ensure stronger safeguards around appeal rights and independent review processes.
  • Codesign and Delay Cuts: Mandate real codesign in the reform process and halt any proposed cuts until genuinely funded, accessible, high-quality foundational supports are operational.
  • Prioritise Integrity Reform: Focus on legislative changes that target and recover the significant integrity leakage, fraud, and waste within the NDIA structure before implementing changes that restrict access or reduce support for genuine participants.

Conclusion

We must protect our NDIS to protect our lives. I respectfully request that the Committee acts to ensure people with disabilities are not harmed by these changes. Contact Details: