Approximately one in 200 students in Australia has epilepsy, a medical condition that affects the brain and causes seizures, which is the Epilepsy Smart Schools program has been developed to support these students, and train schools and educators in understanding their specific needs.
According to Epilepsy Australia, it is estimated that almost 20,000 students in Australia – or one in 200 – have epilepsy, meaning that most educators will teach a student with epilepsy at some stage in their career. Despite these figures, only a small portion of schools are properly trained in coping with and understanding the needs of students with epilepsy.
Epilepsy is the third most common health condition in school-aged children (after asthma and diabetes) and is also one of the top five avoidable causes of death in people aged between five and 29.
“These alarming statistics reinforce the need for schools to exercise their duty of care under the Australian Government’s Disability Standards for Education 2005 framework, to create safe and supportive educational environments for the thousands of students with epilepsy. However, only 475 schools across the country currently meet these requirements, despite epilepsy specific training being readily available,” says Wendy Groot, National President of Epilepsy Australia, the peak coalition of Epilepsy organisations.
In addition to causing seizures, epilepsy can have an impact on learning in the classroom. Cognitive overload can potentially cause seizures; seizures can also make it difficult to concentrate and remember new information; memory difficulties can be a side effect of medication; and some children with epilepsy also have a co-existing developmental condition.
The Epilepsy Smart Schools program was created to assist schools to establish inclusive, safe and educationally sound practices for students with epilepsy.
Primary and secondary schools can become accredited Epilepsy Smart Schools by completing three steps. Firstly, a specific epilepsy management plans needs to be developed for each of the school’s students with epilepsy. This includes a current emergency medication management plan. Secondly, teachers are required to participate in epilepsy specific training. And finally, the school needs to promote awareness by educating the student body about epilepsy.
There are online resources that can be added into the curriculum, or schools can take part in a ‘Purple Day’ event. Purple Day is a grassroots effort dedicated to increasing awareness about epilepsy and it can be held on any day of the year.
“Considering 0.5% of the student population live with epilepsy, within which there are over 40 different types of the condition experienced, it is imperative schools take an individualised approach to meet each student’s needs,” says Ms Groot.
“It is incredibly important that we see a change in the number of schools that are Epilepsy Smart. If a student has epilepsy, more than 95 per cent of schools would not be equipped to understand and modify education strategies, which is simply not good enough.”
Since the launch of Epilepsy Smart Schools in February 2019, numerous schools across the nation have become Epilepsy Smart Schools. As of May 2019, five schools in Tasmania, 12 schools in Western Australia and 80 schools in Victoria have become accredited.
Among these is a rural secondary school in central Tasmania, which contacted Epilepsy Tasmania for support as well as education and training. A female Year 12 student at the school has photo sensitive epilepsy, with two different types of seizures. She has seizures triggered by visual stimuli that forms patterns – for example flashing lights, bold patterns or patterns that move visually, and tonic-clonic seizures.
Due to regular seizures, she was missing out on class time which was affecting her learning. Her memory is also greatly affected by her condition.
The tonic-clonic seizures are more severe. Prior to the onset of this type of seizure she experiences hot flushes and dizziness for around five minutes. During this time her temperature needs to be brought down, however if it can’t be brought down, she will fall to the floor and have a full tonic-clonic seizure. This will include her whole body stiffening, convulsions, excessive saliva and loss of body control for one to two minutes. The student typically experiences at least one of these seizures every month.
After these types of seizures, she would often have a change in mood from anger, to embarrassment and exhaustion followed by migraines and a lack of awareness for an unspecified time. Without the right support the potential for injury was high and she was often experiencing a loss of self-confidence and embarrassment following a seizure.
Since contacting Epilepsy Tasmania, the school has implemented a strategy of support for this student before, during and after her seizures. Teachers are aware of the triggers and look to remove or reduce them for each of her classes. They also have a greater understanding about the difficulties of loss of memory and taking in information straight after a seizure, the exhaustion and fragility that comes with seizures.
According to the school, this training and becoming an Epilepsy Smart School has allowed staff to fully support students with epilepsy, and for them to be as successful as possible in achieving their education goals.
As National Manager of the Epilepsy Smart Schools program Michele Barry adds, this student is not alone. “The data indicates that 50 per cent of all schools have at least one student with epilepsy. We also know that some parents choose not to disclose epilepsy due to stigma. When more schools become Epilepsy Smart Schools, we hope that more parents will also choose to disclose their child’s health status.”
There are approximately 9500 schools in Australia. Within the next three years, the Epilepsy Smart Schools program hopes to reach 50 per cent of primary and secondary schools. “All Australian schools are eligible to become an Epilepsy Smart School,” says Ms Barry. “The more we talk about epilepsy, the more likely we are able to have an impact on stigma and create generational change.”
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