The National Disability Insurance Scheme (NDIS) Quality and Safeguards Commission has updated its epilepsy management practice.

As well as outlining the different types of seizures and possible triggers, the practice update also covers how to support participants and how to help them post seizure.

Epilepsy Action Australia says 800,000 Australians will develop epilepsy in their lifetime, with 65 million people around the world diagnosed with it.

The cause of 50% of those people remains unknown while medication is unable to give full seizure control to one in three people.

According to the NDIS Commission, epilepsy is a condition affecting the brain that is more common among people with disability. It causes several types of seizures depending on what part of the brain is affected.

It said people with intellectual disability and epilepsy are at increased risk of severe and uncontrolled seizures compared to other people with epilepsy.

Providers should ensure participants have an epilepsy management plan that has been developed in consultation with specialist doctors and revised at least every 12 months.

Risks associated with epilepsy include:

Falls: Particular care and supervision of participants in the bathroom, kitchen and any room

with hard surfaces is required.

Burn-related injuries: Scalding can occur in the kitchen or bathroom during seizures.

Minimise the risk of burns, such as by reducing hot water temperature or supervising as

appropriate.

Sudden unexpected death in epilepsy: There is an estimated 20-fold increased risk of unexpected death among people with epilepsy, compared to the general population. Seizure detection tools such as smart watches or pressure mattresses can be used for people who are at risk.

Risk of drowning: Ensure particular care and supervision is given to a person at risk of seizures when showering or bathing, or when swimming. Seizure detection such as smart watches or baby monitors may be useful to alert to or detect seizure activity.

Aggression: May occur as a seizure is ending when the person is confused.

Factors that may have contributed to deaths include inadequate epilepsy medication, poor recording of epilepsy management, inadequate seizure monitoring, support staff not being aware or confident of best practice in responding to seizures, and lack of access to medical reviews or specialist consultations

This update comes days after the Commission announced it would sue a care home over the 2019 death of a Sydney resident.

The Quality and Safeguards Commission cited a “litany of failures” against the provider after the 20-year-old woman, who had autism and epilepsy, drowned in a bath.

The Guardian said Court documents allege she was left alone in the bath that evening, with the door ajar. But when one of the women returned to check on her, the door was locked and the young woman wasn’t responding.