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New Epilepsy Smart Disability national program launched today

The new Epilepsy Smart Disability program is now live. It’s part of the $20 million Australian Government funded Epilepsy Smart Australia program launched today in Melbourne, that will assist the 250,000 Australians living with epilepsy, their families, schools, disability support workers plus disability services and facilities across the country.

The ESA launch was hosted by TV presenter Rebecca Maddern with speakers Dr Monique Ryan MP, Professor Sam Berkovic AC, a video message from Hon. Bill Shorten Minister for NDIS, ESA Chair Graeme Shears, Epilepsy Smart School Principal Dr Annette Rome and ESA Ambassadors, 16-yr-old Ava Beck and her mother Lisa.


“Epilepsy is one of the most common chronic neurological disorders in Australia, yet it is not well understood in the community. Epilepsy Smart Australia will make it easier to navigate the world of epilepsy for the 14,000 Australians newly diagnosed each year. Epilepsy Smart Disability will help the disability workforce, disability facilities, organisations and services provide the best care and support that people living with epilepsy need and deserve,” said Graeme Shears, who is leading the ESA collaborative partnership - of six peak health bodies - funded by the Australian Government Department of Health.


There are over 1,200 non-government disability support services in Australia. Epilepsy Smart Disability now provides epilepsy education and training – plus resources and information – for the disability workforce, facilities, organisations and services.


One-in-four Australians who have epilepsy, also live with another cognitive disability. Cognitive conditions like cerebral palsy, down syndrome and autism spectrum disorders have a stronger correlation with epilepsy. Around 20% of people with autism also have epilepsy. Rates of depression, anxiety, dementia, migraine, heart disease, peptic ulcers and arthritis are eight times more common in people with epilepsy than in the general population.


“We now have a one-stop-shop for all epilepsy-related enquiries, information and services. Whether you live in Sydney, Coober Pedy or the Torres Strait Islands, you’ll now have access to the best possible resources and support to help with living with epilepsy. It is our hope that all disability services and carers will utilise the resources on offer.”


Those needing services now have a single point of contact, the National Epilepsy Support Service 1300 761 487. People with complex needs will be referred to their local state service provider for ongoing, individualised epilepsy support, as well as education, training and local events.


Epilepsy Smart Disability contains a knowledge hub of downloadable resources such as Developing an Epilepsy Management Plan, guides for family, carers and support workers, tips for travelling with epilepsy and information on medications and epilepsy and education and employment.


The new Epilepsy Smart Australia program includes the Epilepsy Smart Disability, Epilepsy Smart Aged Care and Epilepsy Smart Schools training programs.


Epilepsy Smart Australia is funded by the Australian Government Department of Health. It is a collaborative partnership between epilepsy service providers across Australia including Epilepsy Foundation (Vic/NSW), Epilepsy Queensland, Epilepsy ACT, Epilepsy WA, The Epilepsy Centre SA/NT and Epilepsy Tasmania.


The redesigned Epilepsy Smart Schools program is now live. It’s part of a $20 million Government-funded Epilepsy Smart Australia program launched today in Melbourne that will change the world for the 250,000 Australians living with epilepsy, including one in 200 Australian students that have epilepsy.


The ESA launch was hosted by TV presenter Rebecca Maddern with speakers Dr Monique Ryan MP, Professor Sam Berkovic, a video message from Hon. Bill Shorten Minister for NDIS, ESA Chair Graeme Shears, Epilepsy Smart School Principal Dr Annette Rome and ESA Ambassadors, 16-yr-old Ava Beck and her mother Lisa.


Less than five percent of the 9,500 schools across the nation are properly trained in coping with and understanding the needs of students with epilepsy.


“Epilepsy is one of the most common chronic neurological disorders in Australia, yet it is not well understood in the community. Epilepsy Smart Australia will make it easier to navigate the world of epilepsy for the 14,000 Australians newly diagnosed each year and Epilepsy Smart Schools will provide Australian schools with the resources they need to better support students with epilepsy,” said Graeme Shears, who is leading the ESA collaborative partnership - of six peak health bodies - funded by the Australian Government Department of Health.


Of the 4.03 million students aged four to 18 years across Australia, it is estimated that 20,150 live with epilepsy, or one in 200. Epilepsy is also in the top three (after asthma and diabetes) of health conditions for school children and is in the top five of avoidable causes of death in people aged five to 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.”


“We believe that no Australian child should experience discrimination at school due to their epilepsy. We want four-out-of-five Australian schools to become an Epilepsy Smart School within the next decade.” Watch the 30 sec TVC about Epilepsy Smart Australia All schools must provide a safe learning environment for all students, including those with additional needs. It is important that teachers and staff understand epilepsy and are equipped to manage it. To become an Epilepsy Smart School, a school must:

  • Ensure each student with epilepsy has a current Epilepsy Management Plan and, if required, an Emergency Medication Management Plan.

  • Complete epilepsy education for all staff, as well as training for staff with a duty of care in the administration of emergency medication, if relevant to a specific child’s needs.

  • Help reduce stigma and increase understanding by holding an awareness-raising or curriculum-based activity.

Dr Annette Rome, Principal of St Margaret’s Berwick Grammar School in Victoria, utilises and values the program.


“Epilepsy Smart Schools provides a framework that helps our entire school community create a safe and comfortable environment for our students living with epilepsy. It covers vital information like administration of emergency medication and recognising when a student is having a seizure. It also helps teachers and staff with a duty of care to manage other epilepsy issues such as memory loss, difficulty with concentration, fear, anxiety and depression,” said Dr Rowe.


The revitalised program includes new best-practice resources including a ‘school transition checklist’ that parents or guardians of children with epilepsy can use to ensure their school is best equipped to support their child. It lists topics to discuss like participation sport, social issues, lighting preferences, fatigue management, excursions and school camps.


Ava Beck is a 16-year-old Australian student living with epilepsy. “Knowing my school is Epilepsy Smart makes me feel a lot more relaxed and supported at school. I feel safer because my friends and teachers know what to do if I have a seizure. The program has also helped to remove some of the stigma around epilepsy, because the whole school is a lot more knowledgeable now. I’m even able to go on school camps for the first time,” said Ava.


Epilepsy Smart Australia will provide better information and resources, referrals and training to understand and manage epilepsy and reduce risk. Epilepsy Smart Australia is also reaching out to under-serviced communities that have traditionally had difficulties accessing services.


The new Epilepsy Smart Australia program includes Epilepsy Smart Disability and Epilepsy Smart Aged Care training programs.


Epilepsy Smart Australia provides:

  • The National Epilepsy Support Service (1300 761 487), a single point of contact for anyone in Australia, offering personalised information and advice as well as referrals to local epilepsy services for complex, ongoing support, training and education, and access to local events.

  • More than 40 downloadable best practice information sheets such as understanding epilepsy and seizures, epilepsy and sleep and swimming with epilepsy.

  • Help with developing Epilepsy Management Plans and Emergency Medication Management Plans.

  • Education and training for people with epilepsy, their families and carers, in understanding and managing epilepsy and in how to administer emergency medication.

  • Education and training for schools, the disability and aged care sectors and workplaces, and specific information sheets such as behaviours and epilepsy, language and epilepsy and numeracy and epilepsy.

  • A new state-of-the-art technology platform that is enabling the delivery of this national program.

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