NDIA Accountability Project

Huntington's disease impacts on allied health services

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Submission 1479

Submission to the Senate Community Affairs Legislation Committee

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

Capacity: Primary Carer, Spouse, and Mainstream System Navigator

Location: New South Wales, Australia

Date: May 2026

1. Introduction and Statement of Lived Experience

I am writing this submission to the Senate Committee as a wife and the primary (only), unpaid carer for my husband, who lives with Huntington’s disease. My husband is an NDIS participant, and our daily life is defined by managing the realities of a severe, progressive, neurodegenerative condition that is decsr8bed a being acombination of ALS, Parkinsons and Alzheimer’s all happening at the one time.

Let the gravity of that sink in for a minute.

All. At. The. One. Time.

While the stated intent of the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 is to ensure the scheme’s sustainability, the proposed changes create systemic barriers that threaten the health, safety, and basic dignity of people with complex, degenerative conditions like Huntington’s Disease. Our journey with the NDIS has consistently been rigid and stressful. A degenerative disease does not pause or wait months for complex administrative reviews; it progresses daily.

Recently, my husband’s NDIS plan was significantly reduced, completely stripping away his access to critical allied health services. This submission details how the proposed amendments

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will institutionalise these devastating outcomes, and offers practical recommendations to protect vulnerable participants.

Response to Specific Provisions of the Bill

2.1 and Stricter Permanence Criteria

2.2 The Bill places a greater onus on participants to prove the permanence of their impairment and to demonstrate they have undergone “all appropriate treatments” to alleviate or remedy their condition.

The Reality of Neurodegenerative Diseases: For families dealing with Huntington’s disease, this requirement is a painful policy failure. There is currently NO CURE and NO TREATMENT to slow progression, and no remedy for Huntington’s Disease. It is entirely genetic and terminal.

The Impact: Forcing families to continuously prove permanence or navigate bureaucratic hurdles regarding “appropriate treatments” creates unnecessary administrative trauma. It forces carers to spend precious time fighting a system rather than providing care, while trying to satisfy criteria that are medically impossible for a degenerative condition to meet.

2.3 Supports and Gutting Allied Health

2.4 The Bill seeks to tighten parameters around “reasonable and necessary” supports and adjust participant budgets for daily capacity building and therapy.

The Case for Essential Allied Health: My husband is currently assessed at IDDSI Level 5 (Minced and Moist). He cannot swallow properly. He is at constant risk of choking and aspiration pneumonia—a leading cause of death in Huntington’s patients. To survive safely, he requires consistent, proactive intervention from a speech therapist and a dietitian. Furthermore, he requires intensive physiotherapy to maintain his remaining physical function, muscle tone, and mobility.

The Impact of Current Cuts: Because our plan was recently gutted of these allied health services, we are living the reality of what this Bill threatens to standardise across Australia. Stripping a

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Level 5 dysphagia patient of a speech pathologist and dietitian is not a “sustainability measure”—it is a direct threat to life and human dignity.

2.3 Heightened Expectations on Families and Unpaid Carers

The proposed framework relies heavily on shifting the burden of care back onto “informal supports” (families and unpaid carers) to curb scheme costs.

The Reality of Carer Burnout:

As a spouse, I want nothing more than to care for my husband, but the physical and psychological toll of a neurodegenerative disease requires specialised clinical support. Expecting a spouse to absorb the roles of physiotherapist, speech pathologist, and constant safety monitor without professional backing is unsustainable! All while working full time to keep a roof over our head and pay for all the medical day-to-day needs of someone with Huntington’s Disease. It breaks down families, destroys the mental health of carers, and inevitably forces participants out of the home and into high-cost state health systems or premature residential aged care.

## 2.5                          Standardised Functional Capacity Assessments and Plan End Dates
                          
## 2.6                     The introduction of standardised, evidence-based functional capacity assessments to reset budgets risks reducing highly complex, rare, and progressive medical conditions to a rigid,
                             automated point system.

The Systemic Friction:

The journey with the NDIS has already been horrific due to systemic delays. Huntington’s disease causes unpredictable, rapid declines in functioning. If a plan is locked in with strict end dates or managed via automated decision-making without a fast-tracked pathway to adapt to a participant’s sudden degeneration, the system actively inflicts harm by leaving vulnerable people stranded without support during a crisis.

3. What the Committee Must Understand

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People without disability, and policy makers working strictly with budgetary spreadsheets, often do not understand that NDIS funding is not a luxury; it is basic life support.

When you cut a speech therapist or a dietitian from a person who cannot swallow safely, you are not cutting “fluff.” You are removing the only safeguard keeping them from choking at the dinner table. When you cut physiotherapy from someone with an involuntary movement and neurodegenerative disorder, you are accelerating their confinement to a bed, which drastically increases the risk of pressure sores, muscle contractures, and systemic infections.

The practical consequence of this Bill, as it stands, will be a shifting of costs. If the NDIS refuses to fund these proactive, preventative allied health interventions, participants like my husband will deteriorate rapidly. They will end up in emergency departments and public hospital beds, shifting the financial burden from the NDIS to an already failing state health system.

4.  Recommendations to the Senate Committee

I ask the Committee to consider the following urgent recommendations and amendments to the Bill:

  • Exempt Terminal and Progressive Neurodegenerative Diseases from Ongoing Treatment and Permanence Proofs: Establish a clear administrative fast-track and exemption list for conditions like Huntington’s disease, where it is medically established that no curative treatments exist.

  • Mandate the Protection of Vital Allied Health in “Reasonable and Necessary” Definitions: Explicitly protect clinical allied health interventions (such as speech pathology, dietetics, and physiotherapy) from budget cuts when they are directly tied to fundamental life functions, such as safe swallowing and basic mobility.

  • Introduce a Rapid-Response Pathway for Progressive Conditions: Ensure that plan reassessments for participants with documented degenerative conditions are exempted from standard wait times and automated delays, allowing budgets to be adjusted immediately as functional capacity declines.

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Formally Factor Carer Capacity and Burnout into Budget Determinations: Mandate that assessments of “informal support” explicitly evaluate the physical and mental toll on the carer, ensuring that family sustainability is protected rather than assumed.

Thank you for considering the lived reality of families who live with the daily weight of neuro degenerative disease. I urge you to implement these safeguards to ensure the NDIS remains a compassionate, human-centred scheme.