Submission

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, annd our dailly life iis defined bby managing thhe realities oof aa severee,, progresseevv,,, neurodegenerative condition tthat is decsr8bed a being acombination oo ALS,,,, Parkinsons aaaand Alzheimer’s all happening at the one time. Let tehe gravity ohf that sink in foor a minute. All. At The One Time. While teh stated intent ot he National Disability Insurance Scheme Amendment Securing the NDIS foor Future Generations Bill 2026 iss too ensure thee scheme’s sustanabilityy., tthe propoosed changes creat sysstemic barriresrthaht threaten eehalthh,, saafetyyya,and basic dignifyty yof peopple wwith complexd , degenerative conditioons like Huuntington’s Diseassee.. oOur jouourney wiith the NDIS has consistently been rigid and stressfuul.. A degeenerativve diseased does not pause or wait months foe complex administratrive reviews; it progressess daily. Recentlyt ,, mmy husbband’s NDIS plan was significantly reduced, completely strippinng away his access to criticaal allied health serviceses… This submission details how the proposed amendments

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

Submission 1479

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

Response to Specific Provisions of the Bill

And stricter permanence criteria

The Bill places greater onus on participants to prove their impairment’s permanence,

demonstrate they have undergone “all appropriate treatments” to alleviate or remedy it.

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

Submission 1479

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.

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 psychological toll neurodegenerative requires specialised clinical support expecting spouse absorb roles physiotherapist speech pathologist constant safety monitor professional backing unsustainable! All while working full time keep foof over our head pay medical day needs someone with Huntington’s Disease It breaks down families destroys mental health carers inevitably forces participants out home into high-cost state health systems or premature residential aged care.

Standardised Functional Capacity Assessments Plan End Dates

The introduction standardised evidence-based functional capacity assessments reset budgets risks reducing highly complex rare progressive medical conditions rigid automated point system .

Systemic Friction: Our journey already been horrific due systemic delays. Huntington’s disease causes unpredictable rapid declines functioning If plan locked in strict end dates managed via automated decision-making without fast-tracked pathway adapt participant sudden degeneration System actively inflicts harm leaving vulnerable people stranded support during crisis. 3 What Committee Must Understand

National Disability Insurance Scheme Amendment Bill

Submission 1479 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 removing the only safeguard keeping them from choking at dinner table. When you cut physiotherapy from someone with an involuntary movement disorder neurodegenerative disease accelerating their confinement bed which drastically increases risk pressure sores muscle contractures systemic infections practical consequence this bill stands will shifting costs if ndis refuses fund these proactive preventative allied health interventions like my husband deteriorate rapidly end up emergency departments public hospital beds financial burden ndis failing state health system Recommendations Senate Committee ask committee consider following urgent recommendations amendments: Exempt Terminal Progress Neuro Degener Diseases Ongoing Treatment Permanence Proofs Establish clear administrative fast track exemption list for conditions Huntington’s disease medically established curative treatments exist Mandate Protection Vital Allied Health Reasonable Necessary Definitions Explicitly protect clinical allied health interventions such as speech pathology dietetics physiotherapy directly tied fundamental life functions safe swallowing mobility Introduce Rapid Response Pathway Progressive Conditions Ensure plan reassessments participants documented degenerative conditions exempted standard wait times automated delays budgets adjusted immediately functional capacity declines

National Disability Insurance Scheme Amendment Bill

Formally Factor Carer Capacity and Burnout into Budget Determinations:

Mandate assessments of “informal support” explicit evaluation of the physical and mental toll on the carer, enhancing family sustainability.

Thanking consideration of familial realities under Neuro Degenerative Disease’s burden; urging implementation safeguard ensuring compassionate & human-centric NDIS.