Does epilepsy qualify for NDIS?

Epilepsy can qualify for NDIS when it causes permanent or substantially permanent functional impairment affecting daily life. Epilepsy alone may or may not meet NDIS eligibility; the key question is functional impact. For many people, epilepsy is well-controlled with medication and does not substantially limit daily function. For others, uncontrolled or drug-resistant epilepsy significantly affects independence, safety, community participation, and the ability to work or study. Co-occurring conditions such as intellectual disability, autism, or acquired brain injury significantly strengthen an NDIS access request. Functional evidence from a neurologist documenting daily living impacts supports the access request.

What is an Epilepsy Management Plan (EMP) and who completes it?

An Epilepsy Management Plan (EMP) is a personalised written plan that documents: the person's specific seizure types and how they look; known triggers; the correct first aid response for each seizure type; when to call 000; and any rescue medication instructions. The EMP is completed by the treating neurologist, epileptologist, or in some cases the GP, and is specific to the individual. No two people with epilepsy have identical plans; the seizure types, first aid requirements, and rescue medication vary between individuals. Epilepsy Action Australia provides EMP templates used widely in Australian clinical settings. Every support worker and family carer must have access to and be trained on the person's specific EMP.

What is basic seizure first aid?

Basic seizure first aid for a generalised tonic-clonic (convulsive) seizure: stay with the person; time the seizure from the moment it starts; gently protect their head from injury (with something soft underneath if possible); do not restrain the person's movements; do not put anything in their mouth; do not give water or food until the person is fully alert; turn the person onto their side (recovery position) as the jerking subsides; stay with the person until they are fully recovered and orientated. For absence seizures or focal seizures where the person is confused but upright: stay nearby, speak calmly, guide them away from hazards, do not restrain. First aid for different seizure types differs; the person's EMP specifies the response for their specific seizure types.

When should you call 000 for a seizure?

Call 000 for an epileptic seizure when: the seizure lasts more than 5 minutes; a second seizure occurs without the person recovering in between; the person does not regain consciousness within a few minutes of the seizure ending; the person is injured during the seizure; the person has difficulty breathing during or after the seizure; the person is pregnant; the person has diabetes; the seizure occurred in water; or it is the person's first known seizure. Do not call 000 for a seizure that stops within 5 minutes and from which the person recovers normally, if this is consistent with their normal pattern. The person's EMP may specify additional calling criteria specific to them.

What is rescue medication and who can administer it?

Rescue medication is medication used to stop a prolonged seizure. In Australia, buccal midazolam (administered inside the cheek) and intranasal diazepam (administered into the nostril) are the most common rescue medications for home use. They are prescribed by the neurologist for people whose seizures have a pattern of becoming prolonged (status epilepticus risk). Rescue medication administration in the NDIS context requires: a prescription from the neurologist; a medication administration plan developed by a registered nurse or the prescribing doctor; documented training for each individual support worker in the specific medication, dose, route, and timing; and regular retraining. Support workers should never administer rescue medication without specific training and authorisation for that individual.

What water safety precautions are essential for people with epilepsy?

Water is a significant safety risk for people with epilepsy because a seizure in water, even shallow water, can cause drowning in seconds. Essential water safety precautions include: showering rather than bathing where possible (a brief seizure in a bath can be fatal); if bathing is preferred, a carer must be present and the water level kept very shallow; swimming only with a carer or trained person physically nearby in the water, not watching from the side; informing lifeguards at public pools; not being left alone in any body of water including paddling pools; and not locking bathroom or toilet doors. These precautions apply regardless of how well-controlled the person's epilepsy appears; breakthrough seizures can occur unexpectedly.

What NDIS supports are relevant for people with epilepsy at home?

NDIS supports for people with epilepsy at home include: support workers trained in seizure management for supervision and daily living assistance; nursing support for medication management, EMP training delivery, and clinical monitoring; behaviour support (where epilepsy-related behaviour changes require a positive behaviour support plan); OT home safety assessment (identifying seizure-related risks in the home environment and prescribing modifications and equipment); and support coordination to manage the multi-provider team. For people with epilepsy and co-occurring conditions (intellectual disability, autism), NDIS plans are typically more comprehensive. Specific NDIS funding for seizure management training delivery can be included in plans where training of multiple support workers is ongoing.

What does Epilepsy Action Australia provide for families?

Epilepsy Action Australia is the national organisation for people with epilepsy and their families. They provide: a 24-hour helpline staffed by epilepsy nurses (1300 37 45 37); epilepsy management plan templates and guidance; seizure first aid training for carers, support workers, and schools; information on driving and epilepsy (a critical issue for adults of driving age); advocacy for access to treatment; peer support and connection to the epilepsy community; and resources for specific contexts including workplaces and schools. Their epilepsy nurse advisors can speak directly with support workers, families, and educators about seizure management for a specific person.

Epilepsy Safety Plan at Home: Seizure Response, Support Worker Training, and Family Coordination

Key Points

An Epilepsy Management Plan (EMP) is the foundation of home safety; it is specific to the individual and must be shared with and trained on by every support worker, family carer, and relevant person
Basic tonic-clonic seizure first aid: time the seizure, protect the head, do not restrain, do not put anything in the mouth, place in recovery position as jerking subsides; call 000 if the seizure exceeds 5 minutes
Rescue medication (buccal midazolam or intranasal diazepam) requires a prescription, a medication administration plan, and documented individual training for each support worker; never administer without these
Water is the highest-risk environment for epilepsy; showering is preferred over bathing; swimming requires a physically present carer; bathroom doors should not be locked
NDIS funds support workers trained in seizure management, nursing, OT home safety assessment, and behaviour support; training delivery for new support workers can be included in NDIS plans
Epilepsy Action Australia’s helpline (1300 37 45 37) is staffed by epilepsy nurses 24 hours and is available for support workers, families, and carers with questions about seizure management

Epilepsy at Home

Epilepsy is a neurological condition characterised by a tendency to have recurrent seizures. Seizures occur when electrical activity in the brain becomes disrupted, causing a temporary change in consciousness, behaviour, sensation, or movement. Epilepsy is one of the most common serious neurological conditions, affecting approximately 250,000 Australians.

Epilepsy is highly variable: some people have rare, brief seizures that minimally affect daily life; others have frequent, severe seizures that significantly restrict independence, work, driving, and participation. Approximately 30% of people with epilepsy have drug-resistant epilepsy, meaning seizures are not adequately controlled despite trying multiple medications.

Most people with epilepsy live at home and in the community. The role of home safety planning is to maximise independence while managing the real risks that seizures present in the home environment. This guide covers the elements of a home safety plan, seizure first aid, rescue medication, support worker training requirements, and the coordination of a home epilepsy response team.

The Epilepsy Management Plan

The EMP is the single most important document in home epilepsy management. It is specific to the individual: their seizure types, their triggers, their first aid, their rescue medication, and their call criteria.

An EMP for a person with epilepsy typically includes:

Section 1: About This Person’s Epilepsy

Diagnosis and cause (if known)
Seizure types experienced (by name and description)
How to recognise each seizure type
Typical seizure duration for each type
What happens after seizures (post-ictal phase): confusion, sleepiness, headache, aggression, wandering
Known triggers: sleep deprivation, stress, illness, missed medication, alcohol, specific stimuli

Section 2: First Aid Instructions

Specific first aid for each seizure type. This varies: first aid for an absence seizure is different from first aid for a focal seizure with impaired awareness, which is different again from a tonic-clonic seizure.

Section 3: Rescue Medication

Medication name and dose
Route of administration (buccal, intranasal, rectal)
Timing: when to give (e.g., “if seizure exceeds 5 minutes”)
What to do if a second dose is needed
When to call 000 even if rescue medication is given

Section 4: When to Call 000

Individual criteria based on the person’s seizure pattern. The general criteria are a starting point, but the neurologist may specify different criteria for this person.

Section 5: Post-Seizure Plan

What to do after the seizure: recovery position duration, when the person can stand, food and water, rest, and when they can resume normal activities.

Seizure First Aid: The Essentials

Generalised Tonic-Clonic Seizure (Convulsive)

This is the most recognised seizure type. The person loses consciousness, stiffens, then convulses rhythmically.

Do:

Stay with the person
Start timing from when the seizure begins
Cushion the head with something soft
Move dangerous objects away
Loosen tight clothing around the neck if it can be done easily
Turn the person gently onto their side as the convulsive phase ends (recovery position)
Stay with the person until fully recovered
Document: date, time, duration, seizure type, recovery time

Do not:

Restrain the person’s movements
Put anything in their mouth
Give water or food until fully alert
Leave the person alone during or immediately after

Absence Seizures

Brief (usually 5 to 30 seconds) periods of unresponsiveness and staring. The person may look blank or flutter their eyelids.

Stay nearby; speak calmly
Guide away from hazards if needed
Do not restrain
Do not try to stop the seizure
After the absence, the person typically resumes normal activity quickly; gently reorient if they seem confused

Focal Seizures with Impaired Awareness

The person is conscious but confused, unresponsive, or engaging in repetitive automatic behaviours (lip-smacking, picking at clothing, wandering).

Stay nearby; speak calmly and simply
Guide away from hazards without restraining
Do not try to stop the behaviour or restrain
Reassure after the seizure during the recovery phase

Rescue Medication

Who Needs Rescue Medication

Not everyone with epilepsy needs rescue medication at home. The neurologist prescribes rescue medication for people who:

Have a pattern of seizures lasting more than 5 minutes
Have a history of status epilepticus (prolonged seizure state)
Have a seizure pattern that may progress to status

What Rescue Medication Is Used

Buccal midazolam: A benzodiazepine medication drawn into a syringe and administered inside the cheek or under the tongue. Absorbed through the mucous membranes. Most commonly prescribed rescue medication for home use in Australia.

Intranasal diazepam: Administered as a spray into the nostril using a specialised device. An alternative for people where buccal administration is difficult.

Training Requirements for Support Workers

Before any support worker administers rescue medication:

The medication must be prescribed by the neurologist with specific instructions
A medication administration plan must exist, developed by a registered nurse or the prescribing doctor
The support worker must receive specific training in: the medication, the prescribed dose, the route of administration, the timing (when to give), what to do if a second dose is needed, and when to call 000
Training must be documented
Training must be refreshed regularly and when the prescription changes

A registered nurse, epilepsy nurse, or appropriately trained clinician delivers the training. Support workers should never be expected to administer rescue medication without this process.

Home Safety Assessment

An OT with epilepsy safety experience conducts a home safety assessment, identifying risks specific to the person’s seizure type and pattern.

Priority Areas

Bathroom: Highest-risk area. Drowning in the bath is a serious risk. Assessment includes:

Shower versus bath preference and safety modifications
Shower chair if sitting is safer than standing
Non-slip surfaces
Temperature controls (to prevent scalding during a seizure)
Door that opens outward or sliding door (to prevent the person blocking a door if they fall against it)

Kitchen: Burn risk during cooking seizures. Assessment includes:

Induction cooktop versus gas or electric (induction does not produce an open flame and turns off automatically if the pan is removed)
Microwave as primary cooking method where possible
Kettle with automatic shutoff

Stairs: Fall injury risk. Assessment includes:

Stair gates where needed
Handrails both sides
Carpeted stairs to reduce fall impact

Bedroom: Nocturnal seizure risk. Assessment includes:

Bed height (lower beds reduce fall injury risk)
Seizure detection alarms (mattress or audio-based monitors that alert a carer to seizure activity during the night)
Bedside hazards

Swimming and Water Activities: As outlined above.

Support Worker Training

Training support workers in seizure management is not a one-off event. It requires:

Initial training: Before commencing independent support of the person. Covers the person’s specific EMP, seizure recognition, first aid, and rescue medication if prescribed
Documentation: Written record of training completed, date, and trainer
Annual refresher: At minimum; more frequently if the seizure pattern or medication changes
Agency responsibility: The support provider organisation is responsible for ensuring all workers providing support to a person with epilepsy are trained and that training is current

Epilepsy Action Australia delivers seizure first aid training programs. NDIS plans can include funding for training delivery for new support workers where this is an ongoing need.

Coordinating the Home Response Team

For people with epilepsy at home, a response team means everyone who may be present during a seizure knows what to do. This includes:

Paid support workers (trained as above)
Family members and household members
Neighbours if relevant (particularly for people living alone)
Any other regular visitors

A clear emergency contact list should be documented and accessible (on the fridge, by the door):

Primary contact (family or carer)
GP and neurologist contact details
Epilepsy Action Australia helpline: 1300 37 45 37
Emergency: 000

For people who live alone with epilepsy, specific safety planning is more complex. Epilepsy Action Australia provides guidance on independent living with epilepsy, including technology solutions for seizure detection and remote monitoring.

Key Resources

Epilepsy Action Australia - helpline (1300 37 45 37), EMP templates, seizure first aid training, and carer resources
Epilepsy Australia - national advocacy and state association links
NDIS information on medication management - guidance on support workers and medication administration under NDIS
ANZCOR First Aid Guidelines for Seizures - current Australian evidence-based seizure first aid guidelines

Connecting with Epilepsy Support Providers

Carevo connects people with epilepsy to NDIS-registered support workers trained in seizure management, community nurses, OTs, and support coordinators across Australia.

Find an epilepsy support provider through Carevo

Need support at home?

Find the right provider for you or your loved ones through Carevo.

About the author

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Gemma Foxton

Customer Lead

Gemma is Carevo's Customer Lead. She spent several years working as a support worker before moving into concierge and partnerships roles, so she writes from the frontline of care.

Epilepsy Safety Plan at Home: Seizure Response, Support Worker Training, and Family Coordination

Key Points

Epilepsy at Home