Epilepsy And Disability Resources

Some people who have epilepsy also live with another disability.

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.

The cognitive disability may be one that a person was born with or developed early in life.

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.

Using public transport

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:

• travelling with a companion if using a route for the first time to get to know the location of stops and whether any safety measures are needed for the next time
• standing well back from the platform or road when waiting for a train, tram, bus or boat (particularly if wandering, confusion or falling are seizure features)
• bringing water to remain hydrated if the environment is hot dressing appropriately for travel conditions such as wearing warm clothes if it is cold.

Some people may be eligible to receive public transport concessions – speak to the public transport authority to find out more.

Taxi and transport assistance

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.

Travelling

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.

• All airplane companies are required to support the accessibility needs of travellers but it is important to make the company aware of any specific needs when booking. Information about policies and specific support can usually be found on the company’s website.
• Medication must be taken at the usual times, so factor in any time differences.
• Take a doctor’s letter detailing the epilepsy diagnosis, the name of the medications, how much is to be taken and that it is for personal use only. It is best to keep the medication in its original packaging.
• Have enough prescriptions to cover the time away from home if travelling in Australia or overseas. If travelling overseas it may be difficult to obtain medication in another country so it is a good idea to take enough medication to cover the entire journey, and an extra supply if possible. Pack medications in a clear plastic bag, stored in carry-on luggage. This will reduce the risk of the medications being lost in transit.
• Be aware of seizure triggers (e.g. jetlag, tiredness, dehydration).

Research indicates that people who live with epilepsy and a cognitive disability have lower rates of seizure freedom and higher rates of morbidity and mortality.

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:

• lives independently in their own home with a partner or family?
• lives independently in their own home alone?
• lives independently in their own home with carer support visits?
• lives in a supported care environment?

Risk management considerations:

• living independently or alone carries risk if no one can enter the house to assist when needed. Key box locks are a way of allowing other people to gain entry to the home in the event of an emergency.
• medical alerts can assist by recognising if the person has a fall, whether while standing or in a wheelchair.
• floor surfaces can present trip or slip hazards; so minimise surface clutter and ensure there are no loose floor coverings.
• bed pillows present a suffocation risk in the event of night seizures. Firm pillows or anti-suffocation pillows are considered safer to use.
• falls present a risk of hitting furniture or items in the home, so limiting clutter within the home reduces the risk of injury in the event of a fall.
• reduce the risk of injury by avoiding working or walking on ladders and ledges.
• swimming carries a risk of drowning and an observer or swimming companion trained in seizure first aid should always be present.
• should seizures that result in falling occur regularly, minimising the risk of head injury by wearing a helmet may be recommended.
• reduce the risk of falls when shopping or in the community by being aware of the immediate environment, keeping hands free as a support or being accompanied by a companion.