Epilepsy and the NDIS: Access, Evidence and Episodic Impairment

Epilepsy and the NDIS: the hardest access request to make, and the words that win it

Epilepsy is the hardest common condition in Australia to get NDIS funding for, and the reason is structural rather than anybody’s fault.

Two things combine. The first is that epilepsy is not named on the NDIS access lists. Go through the current operational guideline and you will find Lennox-Gastaut syndrome and West’s syndrome on List B, under the heading “Episodic and paroxysmal disorders” within conditions primarily resulting in neurological impairment. You will not find “epilepsy.”

The second is that epilepsy is, by definition, episodic. Between seizures a person may be entirely well. A planner meeting them on a good day meets somebody who presents as fully capable, because on that day they are — and the impairment that matters is the one that arrives without warning, three times a month, and takes two days to recover from.

So an epilepsy access request has to be built entirely on functional evidence, with no list to lean on, for a condition whose defining feature is that it comes and goes.

Here is the part almost nobody uses. The operational guideline itself answers this objection, in plain language, in the NDIA’s own words. It says:

“You might have some times in your life where there’s a smaller impact on your daily life, because your impairment may be episodic or fluctuate in intensity.”

“Even if your needs go up and down over time, or happen episodically” — the NDIA may still consider it likely you will need supports for your lifetime.

“Your needs might go up and down each day or each month.” The NDIA considers “your ability over time, taking into account your ups and downs.”

“You might still have a permanent impairment, even if its effects may change over time.”

“Your impairment can still be permanent due to the overall impact on your life, and the likelihood that you’ll be impacted across your lifetime.”

Those sentences are the single most useful thing in this guide. If an epilepsy access request or review is refused on the basis that the impairment is intermittent, that refusal is being made against the guideline’s own stated position — and quoting it back, by name, changes the conversation.

This guide covers how to build the request, what the evidence has to contain, what to do about the “but they seem fine” problem, where epilepsy supports sit in a plan, and what to do when a decision goes wrong.

Why epilepsy is treated differently

Worth understanding, because it shapes the whole approach.

The NDIS was designed around stable, visible impairment. A permanent condition, assessed once, supported with a plan. That model handles cerebral palsy and spinal cord injury well. It handles conditions that fluctuate — epilepsy, multiple sclerosis, psychosocial disability, chronic pain — considerably less well, and it handles conditions that are invisible between episodes worst of all.

Epilepsy is also extremely variable in severity. Around 151,000 Australians have epilepsy according to the AIHW, and a substantial share have well-controlled seizures on a single medication and need no disability support whatsoever. That is a good thing, and it also means the NDIA is reasonably cautious about a diagnosis that in many people produces no functional impairment at all. The access test is not “do you have epilepsy.” It is “what can you not do.”

And the support need in epilepsy is frequently supervisory rather than physical. Somebody who needs another person present because a seizure could happen — not because they cannot dress or cook — is asking for a kind of support that assessments are poor at capturing, because the need is for availability rather than for a task.

Two consequences follow. Epilepsy on its own, well-controlled, is unlikely to meet the access test and probably should not. Epilepsy that is uncontrolled, or that comes with cognitive, psychiatric or safety consequences, or that sits alongside another disability, frequently does meet it — and is frequently refused anyway because the request was built badly.

Where epilepsy usually succeeds

Being realistic about this saves people a great deal of wasted effort.

Epilepsy alongside another condition. This is how epilepsy most often reaches the NDIS, and it is the strongest position. Epilepsy occurs at much higher rates in people with intellectual disability, cerebral palsy, autism and acquired brain injury than in the general population, and where the other condition establishes access, epilepsy shapes what the plan has to fund — supervision, trained workers, emergency medication, overnight arrangements. See epilepsy and intellectual disability.

A named syndrome on List B. Lennox-Gastaut syndrome and West’s syndrome are on the list. If either applies, say so explicitly and attach the diagnosis.

Developmental and epileptic encephalopathies more broadly — Dravet syndrome and related conditions — which typically bring intellectual disability, mobility problems and very high support needs alongside the seizures.

Drug-resistant epilepsy with functional consequences. Frequent seizures despite adequate trials of medication, with the consequences documented: injuries, hospital presentations, inability to work or study, inability to be left alone, cognitive effects, loss of licence, loss of independence. See drug-resistant epilepsy.

Epilepsy with cognitive impairment, which is common and under-assessed, and which is evidenced with neuropsychological assessment rather than asserted.

Epilepsy with significant psychiatric comorbidity. The AIHW notes that about half of people with epilepsy also have a physical or psychiatric condition, and an Epilepsy Action Australia survey found around 20 per cent of respondents reporting depression — roughly double the general population rate — with about one in six reporting anxiety and more than half rating their quality of life as low-to-average.

And epilepsy with a documented safety need. Somebody who cannot safely shower, cook, swim, cross a road or be alone overnight because of seizure risk has a functional impairment in self-care and self-management, and it should be written up as exactly that.

What the evidence has to contain

This is where epilepsy requests are won and lost, and the failure mode is specific.

The failure mode: a neurologist’s letter stating the diagnosis, the seizure type and the medication, with the sentence “seizures remain poorly controlled.” That is a good clinical letter and it is close to useless as NDIS evidence, because it describes a condition rather than a loss of capacity.

What has to be in there instead:

A seizure diary, covering months rather than weeks. This is the foundation document and almost nobody is told to produce it. Dates, times, seizure type, duration, what happened before, whether emergency medication was used, injuries, recovery time, and — critically — what the person could not do that day or the next. Six months of that, in a table, is the most persuasive evidence available in an epilepsy request, and it directly answers the episodic objection by showing the pattern over time.

Recovery time, stated explicitly. This is the most under-documented thing in epilepsy and frequently the largest part of the functional impact. A tonic-clonic seizure lasting ninety seconds can be followed by two days of confusion, exhaustion, headache and memory disturbance. Somebody having four seizures a month may be functionally unavailable for a third of the month. Nobody will infer that; the diary has to show it.

The supervision requirement, named and justified. Not “needs supervision” but: cannot shower unsupervised because of drowning risk in a seizure; cannot cook unsupervised because of burns risk; cannot be alone for more than X hours; requires somebody who can administer emergency medication; requires overnight monitoring because seizures occur in sleep. Each of those is a specific, fundable support with a safety rationale.

An occupational therapy functional assessment, conducted at home, addressing all six NDIS domains. Mobility, communication, social interaction, learning, self-care and self-management — and in epilepsy, self-management is frequently the strongest domain and the one least often argued, because managing medication, appointments, triggers, sleep and risk is itself the impaired function.

A neuropsychological assessment where there is any cognitive effect, which there often is — from seizures, from medication, or from the underlying cause.

Hospital and ambulance records. Emergency department presentations, admissions, status epilepticus episodes. These are objective, dated, third-party documents and they carry weight that self-report does not.

Injury records. Burns, fractures, dental injuries, head injuries, drownings and near-drownings. Photographs where appropriate.

And the clinical letter rewritten to purpose. Ask the neurologist or epilepsy nurse to state: the diagnosis and syndrome; the seizure types and frequency; the number of medications tried and failed, by name, which establishes drug resistance; the functional consequences across the domains; that the impairment is permanent notwithstanding its episodic nature, in the guideline’s own words; and what happens without supports.

The “but they seem fine” problem, and how to answer it

Every family dealing with epilepsy and the NDIS encounters this, and there is a way to handle it.

Expect the good-day assessment. A planner or assessor will likely meet the person between seizures, when they present well. That is not evidence of anything and it should be named rather than resented.

Say it in advance, in writing. A line in the request: “The person’s presentation on any given day does not reflect their functional capacity over time. Please refer to the seizure diary covering [dates], which records X seizures over Y months with an average recovery period of Z days.”

Then quote the guideline. Directly, with its own wording about episodic impairment and about considering ability over time, taking into account the ups and downs. This signals that you know the test and that the request has been built against it.

Bring the diary to the meeting. Not a summary — the actual document, with the dates visible.

Describe a bad week concretely. Not “it varies.” A dated account: Tuesday, seizure at 6am, incontinent, bitten tongue, slept until 2pm, confused and unable to be left alone for the rest of the day; Wednesday, headache, could not work, needed help showering because of the fall risk while still drowsy; Thursday, functioning again.

And have somebody else present who sees it. A partner, a parent, a support worker. The person with epilepsy frequently has no memory of their own seizures and is a poor witness to their own impairment, which is a genuine evidentiary problem and one worth stating.

What an epilepsy plan should actually fund

Support hours for supervision, including the specific activities that cannot be done alone.

Overnight support, where seizures occur in sleep. This is the single largest cost line and it should be settled on the basis of the diary rather than an estimate. Covered in supported independent living with epilepsy.

Workers trained and signed off in seizure support and emergency medication. Epilepsy and seizure support is a high intensity support under NDIS arrangements, requiring specific competence rather than general disability experience, delivered under a plan from the treating practitioner with training and sign-off documented. The delivery side of this is covered in detail in epilepsy and seizure support.

Assistive technology. Seizure detection and alarm devices, bed monitors, shower seats and anti-scald devices, protective headwear in some cases, and an alert system the person can use. Ask for assessment, training and maintenance alongside the device.

Home modifications where relevant — a shower with no bath to drown in, rounded corners, a hob with a cut-off, appropriate flooring.

Support coordination, particularly where neurology, an epilepsy nurse, a GP, allied health and a provider all need to move together.

Allied health as an ongoing item rather than a block — occupational therapy for safety and function, psychology for the mood and anxiety that accompany epilepsy at high rates, and neuropsychology for cognition.

Transport, which matters a great deal because loss of licence is near-universal in uncontrolled epilepsy and public transport is not always safe or practical. See driving, work and independence.

Community participation hours. Social isolation in epilepsy is severe and well documented, and hours funded for a life are not a luxury item.

And capacity building for the household, including seizure first aid and emergency medication training for family members, which is a legitimate request.

If the decision goes wrong

Read the decision letter and identify the limb of the test that failed. In epilepsy it is almost always either permanence — on the basis that the impairment is intermittent — or substantially reduced functional capacity. Both are answerable.

If permanence was the issue, quote the guideline. The NDIA’s own operational guidance states that an impairment can be permanent even where it is episodic or fluctuates, and that it considers ability over time taking the ups and downs into account. An internal review submission that quotes this directly is a different document from one that argues the point in general terms.

If functional capacity was the issue, add the diary and the OT assessment. Those are usually the two things missing.

Internal review under section 100 of the NDIS Act, lodged within three months, with the NDIA having 90 days to decide. Add what was absent rather than resubmitting the same file.

Get an advocate, free. The NDIS Appeals programme funds independent advocates for reviews and tribunal matters. Bring one in when the review opens rather than once it has already gone against you. Epilepsy Action Australia and the Epilepsy Foundation can also help with information and, in some states, with support through the process.

Then the tribunal. The Administrative Review Tribunal, which replaced the Administrative Appeals Tribunal in October 2024. Applications within 28 days of the internal review decision, no fee for NDIS matters.

And if access genuinely is not met, that is not the end of support. The health system funds neurology, epilepsy nurses, medication through the PBS and hospital care. Epilepsy Action Australia runs a nurse-staffed helpline on 1300 37 45 37 and the Epilepsy Foundation on 1300 761 487. Carer Gateway on 1800 422 737 supports the carer independently of the person’s funding. State epilepsy organisations run education and training, including for employers and schools.

What to put in the file, as a checklist

Everything above comes down to a bundle of documents, and the requests that succeed tend to contain the same things.

A neurologist’s letter stating the diagnosis, the seizure type, the epilepsy type and the syndrome if there is one, the current seizure frequency, the medications tried and failed, and — critically — an explicit statement that the impairment is permanent notwithstanding that it is episodic, in the guideline’s own language.

A seizure diary covering at least three months, showing frequency, type, duration and recovery time. Documented frequency is what converts “has epilepsy” into “is impaired.”

A functional report, ideally an occupational therapy assessment conducted at home, describing what the person cannot safely do alone: shower, cook, swim, cross a road, use public transport, be left overnight, supervise children, work at heights.

A written account of the recovery periods, which is the part assessments miss entirely. Somebody with four tonic-clonic seizures a month who loses a day and a half to each one is impaired for around 20 per cent of their life, and nobody counts that unless you count it for them.

A neuropsychological assessment, where memory or cognition is affected.

Evidence of the supervisory need, stated as such: that the requirement is for another person to be available, not for help with a task. This is the kind of need assessments handle worst and it has to be spelled out.

A psychologist’s or psychiatrist’s report, where mood is part of the picture — which it frequently is.

And any syndrome diagnosis that appears on List B, attached and flagged in the covering letter.

One practical note: send a short covering letter yourself, listing what is enclosed and why. Access decisions are made by somebody reading a file quickly, and a page that tells them what they are looking at and which test each document addresses materially improves the odds.