Brain Tumours and the NDIS: Access, Evidence and the List Gap

Brain tumours and the NDIS: Parkinson’s is on the list, brain tumours are not

The NDIS publishes List B: conditions where permanent impairment is considered likely, though functional capacity still has to be assessed. Under the heading “Conditions primarily resulting in neurological impairment” it lists Alzheimer’s dementia, Creutzfeldt-Jakob disease, HIV dementia, Huntington’s disease, multi-infarct dementia, Parkinson’s disease, post-polio syndrome and vascular dementia. Under “Systemic atrophies primarily affecting the central nervous system” it lists motor neurone disease, primary lateral sclerosis, progressive bulbar palsy and spinal muscular atrophy.

Brain tumours appear nowhere. Not on List A, not on List B, not under any heading.

Yet a brain tumour can cause hemiparesis, aphasia, visual field loss, severe cognitive and executive impairment, personality change, seizures and profound fatigue — sometimes all at once, sometimes permanently, and sometimes within weeks. The impairments are indistinguishable in kind from the ones that put the conditions above on the list.

Researchers from Flinders University, writing in The Conversation, identified exactly this asymmetry: brain tumours are not listed among the conditions likely to meet the disability requirements, while conditions such as motor neurone disease and Parkinson’s disease are. Their broader point was harder: unclear guidelines about which system provides functional supports — NDIS, health, palliative care or aged care — leave people, particularly those under 65, with little or no functional support until the final weeks of their lives.

That is the problem this guide is about. We are a registered provider working with participants across New South Wales, not a clinical service, and nothing below is medical advice. What we can set out is how access applications in this area actually work, because the gap between “clearly has permanent impairment” and “has an NDIS plan” is where a great many people with brain tumours get stuck.

The Australian numbers

Cancer Australia’s figures for 2025 estimate 2,098 new brain cancer diagnoses — 1,262 in males and 836 in females — and 1,639 deaths. Five-year relative survival for 2017 to 2021 was 24 per cent overall, 22 per cent in males and 26 per cent in females. The age-standardised incidence rate is around 7.6 per 100,000, and incidence rises with age, peaking in the 80 to 84 age group.

Two things follow from that.

First, survival is low by Australian cancer standards. Most common cancers in this country now have five-year survival well above 70 per cent. Brain cancer sits at 24 per cent. Survival is markedly better in younger adults — the reporting notes around 68 per cent five-year relative survival for people aged 20 to 39 — and markedly worse with age.

Second, incidence peaks at 80 to 84, which is two decades past the NDIS age limit. Most people who develop a brain tumour in Australia are too old to join the scheme. The access conversation only applies to the minority who are diagnosed under 65 — and for them it applies urgently.

A note on terminology, because it affects eligibility thinking: not all brain tumours are cancer. Meningiomas, pituitary adenomas and acoustic neuromas are usually benign, and most are not counted in cancer statistics. They are also capable of causing severe, permanent impairment, through their position, through pressure effects, and through the consequences of surgery to remove them. People in this group frequently do not consider the NDIS at all, because they do not think of themselves as having had cancer and they do not think of a benign tumour as a disability. The access test does not care about the histology. It cares about the impairment.

What brain tumours actually do, and which NDIS domains it engages

Brain tumour impairment is location-dependent, which is why there is no typical presentation and why the evidence has to be built individually.

Hemiparesis or hemiplegia. Weakness or paralysis down one side, from a tumour in the motor cortex or its pathways, or from surgery.

This one is worth knowing in detail, because List A includes hemiplegia with severe or total loss of strength and movement, and spinal cord or brain injury causing paraplegia, quadriplegia or tetraplegia. Where a brain tumour has caused hemiplegia at that severity, the person may meet a List A pathway — not because of the tumour, but because of what the tumour did. This is routinely not recognised, because the cause was a tumour rather than a stroke or a trauma.

Aphasia and communication impairment. Expressive or receptive language impairment from tumours affecting language areas. Engages the communication domain directly, and often social interaction.

Cognitive and executive impairment. Memory, attention, processing speed, planning, initiation, judgement, insight. This is the most common and the most under-documented category, and it is the one that most often determines whether somebody can live independently. Engages learning, self-management and social interaction.

Personality and behavioural change. Frontal lobe involvement in particular can produce disinhibition, apathy, loss of empathy or aggression. Families often describe this as the hardest part, and it is frequently the least well documented in clinical records because it does not show up on a scan.

Visual field loss. Hemianopia or quadrantanopia from tumours affecting the optic pathways or occipital lobe. Affects mobility, reading, and driving, and is easily missed in a standard consultation because the person compensates by turning their head.

Seizures. Common both from the tumour and after craniotomy. Carries driving restrictions, workplace implications and safety implications for showering, cooking and being alone.

Fatigue. Severe, and often the single most limiting symptom. Fatigue from a brain tumour, from radiotherapy to the brain, and from anticonvulsants is not tiredness; it is an inability to sustain activity. It is also the hardest thing to evidence, because it does not appear on imaging and it fluctuates.

Endocrine impairment. Pituitary and hypothalamic tumours, and radiotherapy to that region, can cause permanent hormonal deficiencies requiring lifelong replacement, with fatigue, temperature regulation and cognitive consequences.

Balance and coordination. Cerebellar tumours produce ataxia, which affects mobility, falls risk and fine motor function.

Swallowing impairment. Brain stem involvement can cause dysphagia, with aspiration risk.

The permanence problem, which is crueller here than anywhere else

Here is the structural difficulty, and it deserves to be stated honestly rather than skirted.

The NDIS requires impairment that is permanent or likely to be permanent, and it excludes time-limited conditions. Permanence, in the scheme’s terms, means there is no known, available and appropriate treatment that would remedy the impairment.

A high-grade brain tumour is life-limiting. The impairment it causes will not improve. By the scheme’s own definition that impairment is permanent — it is not going to be remedied.

But in practice, applications in this area run into a reasoning problem. A condition that is going to end a person’s life within a defined period can get treated as “time-limited” rather than “permanent”, and the health system’s involvement in an actively progressing malignancy pulls the whole situation toward being characterised as a health matter rather than a disability one. The Flinders University authors identified exactly this consequence: people are left with little or no functional support until their final weeks.

The logic of that is backwards and it is worth saying so plainly. An impairment that will never improve is the clearest possible case of permanence. A person whose hemiplegia will last the rest of their life satisfies the permanence test by any reading — the fact that the rest of their life may be short makes the need more urgent, not less genuine.

The reporting also notes that some refusals in this area have been overturned on appeal. That matters practically: a first-instance refusal is not a determination that the person does not qualify, and the review pathways exist and work.

What the evidence package has to contain

The evidence bar here is high and the applications that succeed are the ones that are assembled deliberately with the treating team’s involvement. A form filled in by a family member without clinical backing will usually fail.

1. Lead with the impairment, not the tumour. The application is about hemiparesis, aphasia, executive dysfunction, visual field loss. The tumour appears as the cause, in one line. An application that reads as “this person has brain cancer and needs support” invites a refusal on the basis that cancer is a health condition. An application that reads as “this person has permanent left hemiparesis with severe loss of strength and movement, permanent expressive aphasia, and permanent executive impairment” is an impairment application.

2. Neuropsychological assessment is the central document. This is the single highest-value piece of evidence in a brain tumour application and the one most often missing. Cognitive and executive impairment is what determines whether somebody can manage at home, and without formal assessment it is invisible to the scheme. Family report of memory and judgement problems, however accurate, rarely establishes substantially reduced functional capacity on its own.

Ask for a referral. If the person is being treated in a public hospital, ask whether neuropsychology is available through the service. If it has to be done privately, it is worth the cost — it is often the difference between approval and refusal.

3. Occupational therapy functional capacity assessment. Translates impairment into the six access domains: communication, social interaction, learning, mobility, self-care and self-management. Should cover transfers, mobility, personal care, meal preparation, medication management, community access, safety awareness and what happens on a bad day.

4. Specialist statement on permanence. Neurosurgeon, neuro-oncologist or neurologist, stating in writing that the impairment is permanent, that available treatment has been undertaken, and that no further recovery is expected. The phrasing the NDIA looks for is that there is no known, available and appropriate treatment that would remedy the impairment. Ask for that language specifically.

5. Speech pathology assessment where there is any communication or swallowing impairment.

6. Formal visual field testing where there is visual impairment — orthoptic or ophthalmological assessment with documented fields. “Reports bumping into things on the left” is not evidence; a documented hemianopia is.

7. Seizure documentation where seizures are present — frequency, type, medication, and driving status.

8. Evidence on fatigue, quantified. This is hard and worth the effort. How many hours a day the person can sustain activity. How long they sleep. What they have stopped doing. A two-week diary with times is more persuasive than any adjective.

9. Address fluctuation directly. Brain tumour impairment varies — with treatment cycles, with steroid dose, with fatigue, with seizure activity. Do not present only good days or only bad days. The NDIA’s own position is that impairment may be episodic or fluctuate in intensity, and that it considers a person’s ability over time, taking into account their ups and downs. Quantify the range and say how often the bad days occur.

10. Check whether a List A pathway applies. If hemiplegia with severe or total loss of strength and movement is present, say so explicitly and evidence it, because that is a List A entry. The same applies where tumour or surgery has caused paraplegia or tetraplegia, or where there is bilateral hearing loss above 90 decibels in the better ear, or permanent blindness in both eyes.

The age 65 line, which bites hardest here

Brain cancer incidence peaks at 80 to 84. The NDIS closes at 65, with the age test applied at the date of application.

So for brain tumours specifically, the great majority of people who develop one will never be eligible for the scheme. Their pathway is Support at Home through My Aged Care on 1800 200 422 — which replaced Home Care Packages on 1 November 2025, is capped at roughly $108,000 a year at the highest classification, and is means tested.

For the minority diagnosed under 65, the practical consequence is urgency. If somebody is 63 or 64 with a brain tumour causing permanent impairment, the application should be lodged now, before the evidence is complete, because an application made at 64 remains valid even if it is decided later. There is no exception, no discretion and no appeal on the age criterion itself.

What a plan can fund

Where access is granted, a plan is built on assessed need rather than on diagnosis. For somebody with brain tumour impairment that commonly includes:

• Personal care and daily living assistance
• Supported independent living, or support in the family home
• Assistive technology — mobility equipment, communication aids, shower and toilet equipment
• Home modifications — ramps, bathroom modifications, rails
• Allied health: occupational therapy, physiotherapy, speech pathology, dietetics
• Support coordination, which for a situation this complex is worth arguing for specifically
• Community and social participation support
• Transport
• Support for a carer in the form of respite, within the rules

What it does not fund is the treatment: surgery, radiotherapy, chemotherapy, anticonvulsants, steroids, scans, oncology appointments or medical palliative care. All of those are health-system responsibilities.

If the application is refused

This is common enough in this area that it should be planned for rather than treated as a disaster.

Internal review — requested within three months of the decision. The NDIA has 90 days to decide it. Use the opportunity to add what was missing, which is most often the neuropsychological assessment and the permanence statement in the right words.

Administrative Review Tribunal — which replaced the Administrative Appeals Tribunal in October 2024. There is no application fee, applications are generally lodged within 28 days of the internal review decision, and free advocacy support is available through the NDIS Appeals programme. Refusals in this area have been overturned on appeal.

Request a priority decision if the person is deteriorating. The NDIA prioritises eligibility and planning decisions where there has been unexpected, significant deterioration in functional capacity and appropriate supports are not in place, with decisions in two to five business days. For a progressing brain tumour that is often an accurate description, and it should be said in those terms with clinical backing.

Get an advocate. Brain Tumour Alliance Australia provides information on financial and government support including the NDIS. Cure Brain Cancer Foundation runs a national advocacy service that assists people navigating these systems. Disability advocacy organisations funded under the National Disability Advocacy Programme can also assist. For an application this evidence-heavy, having somebody who has done it before is a material advantage.

Children and young people

Paediatric brain tumours are a separate situation in two ways.

During and after treatment, children may be eligible through the early childhood approach or the standard pathway, with impairment assessed as it would be for any child. Cranial radiotherapy in young children has well-recognised cognitive consequences, and the full extent of them often becomes apparent only as the child gets older and the academic demands increase.

As survivors, young adults who had a brain tumour in childhood may carry permanent cognitive, endocrine, hearing or physical impairment and may never have been assessed for the scheme. Five-year survival is substantially better in younger age groups, which means this group exists in meaningful numbers. The barrier is almost entirely one of framing: a 23-year-old who had a medulloblastoma at seven does not think of themselves as having a disability, and nobody in the late-effects clinic raises the NDIS.

If the impairment is permanent and substantially reduces functional capacity, the fact that the treatment finished sixteen years ago is irrelevant to the access test.

Where to get help

• NDIA: 1800 800 110 for access requests and plan questions.
• My Aged Care: 1800 200 422, for people over 65.
• Cancer Council: 13 11 20, free, staffed by cancer nurses — for anything about the cancer itself, treatment or practical support.
• Brain Tumour Alliance Australia: information and peer support for people affected by brain tumours, including on financial and government support.
• Cure Brain Cancer Foundation: national advocacy service.
• NDIS Appeals programme: free advocacy for review matters.