Our Know Me Support Me suite of documents is available for use by people with a disability who are also living with epilepsy, as well as their families and disability support workers.
It is estimated that 1 in 4 people with a cognitive disability are likely to also live with epilepsy.
Certain conditions have a stronger correlation with epilepsy than others, such as Cerebral Palsy, Down syndrome, and Autism Spectrum Disorders.
The Australian Government recognises disabilities which can be broadly categorised as intellectual, learning, neurological, physical, sensory and psychiatric ones. Just as the types of disability are diverse so too are the disability classifications used in Australia. The severity of a disability is classified as profound, severe, moderate or mild according to the extent to which a person needs assistance with core activities, e.g. communication, mobility and self-care.
In other cases a person may have developed a cognitive disability later in life, for example as a result of a traumatic brain injury.
Certain conditions have a stronger correlation with epilepsy and cognitive disability than others, such as Cerebral Palsy, Down syndrome, and Autism Spectrum Disorders. Evidence suggests that in people with a cognitive disability there are high rates both of misdiagnosis of non-epileptic seizures as epilepsy, and failure to diagnose or to treat episodes that are epileptic in nature. Because of this, diagnosing epilepsy can often be a complex and lengthy process. People living with epilepsy and a cognitive disability tend to have seizures that are more severe and difficult to control, an increased risk of mental health issues and an increased risk of preventable death.
Being able to get around is important for everyone; whether that is to visit friends, attend a medical appointment or travel to another part of Australia or the world. A person might get around by driving a
vehicle or using public transport. Travel away from home might see a person use other types of transport such as planes or boats.
Living with epilepsy and a cognitive disability does, however, mean a person may need to take extra precautions when travelling or
using transport, particularly if they have regular seizures and/or use assistive devices such as a wheelchair or walker.
Some people with epilepsy and a cognitive disability are not permitted to drive a car or ride a motorbike. When this happens it is usually to ensure that the person and the public are safe and protected. Some people will never be able to apply for a licence due to the nature of their epilepsy or disability, or may have a licence temporarily suspended because of recent seizure activity.
Accessible and safe public transport is not only needed by people living with epilepsy but also by people with disabilities, pregnant women, children, parents using prams and older people.
To reduce risks, particularly if seizures are frequent, consider:
Some people may be eligible to receive public transport concessions – speak to the public transport authority to find out more.
If a person cannot drive and has difficulty using or accessing public transport they may be eligible for taxi subsidy or Centrelink mobility allowance. Both of these assistance supports have strict criteria which must be met before they are approved. A person may also be eligible for travel and transport assistance as part of a National Disability Insurance Scheme (NDIS) package. To find out more contact Centrelink, the state taxi subsidy scheme and the NDIS.
When travelling, whether it is in Australia or overseas, there are a number of measures which can be taken to ensure time away is enjoyable and safe.
This makes managing epilepsy-related risks important for the person's safety.
Managing risk is about identifying the impact of seizures or medications and putting in place strategies to manage them. Depending on the seizure type there may also be a number of safety issues which need to be considered. This may include the use of safety devices, assistive technology, and/or having on-call or in-house support overnight.
When evaluating risk and safety matters consider whether the person: