Submitted by Carol Ireland
It’s estimated that some 30,000 Australians living with intellectual disability also have epilepsy. Unfortunately, as many as one in four are misdiagnosed, largely due to inadequate training in recognising and managing seizures by their caregivers. Not only is epilepsy more common in people with intellectual disability than in the rest of the population; the requirement for multiple medications is often higher and they can experience more side effects.
It’s easy for an untrained worker to misinterpret seizure activity. Seizures can be subtle or can be mistaken for movements or mannerisms that are sometimes seen in people with severe intellectual and multiple disabilities. This misdiagnosis and mismanagement can reduce quality of life for the person and their family and, in some instances, can even lead to unnecessary death.
We wanted to do something about this so Epilepsy Action has developed 4 courses specifically crafted for workers in the disability sector, families, carers and general health providers who care for people with epilepsy and disability, with the ultimate aim of improving the quality of life of people living with epilepsy and disability.
Before developing the courses, Epilepsy Action underwent a process of consultation including:
- Face to face interviews with key experts in epilepsy and disability
- Desktop research
- Survey of Disability Practitioners
- Survey of people with epilepsy and disability/ their family and carers
Of those surveyed the majority (91%) stated that epilepsy stops them/ the person they care for engaging in their activities of choice. The majority (89%) of those of working age stated that epilepsy makes it hard for them to get and keep a job. Nearly all with a disability support worker (93%) said that training for their Disability Practitioners would help the person with epilepsy live more independently. Despite this high figure, only one in five (21%) said their disability practitioner had any training in epilepsy.
So, the objectives of developing our courses were to:
- increase the knowledge and skills of those caring for people with disability in the identification and management of epilepsy
- reduce unnecessary hospital admissions related to the mis-management of epilepsy in people with intellectual disability
- increase the skill level of the disability workforce and carers in the administration of seizure first aid and emergency procedures in the event of a seizure
- facilitate medical management of seizure activity via effective observation and recording of seizures
- equip carers with the knowledge to assist the person to manage lifestyle factors which reduce their seizure activity
- enable the person with an intellectual disability to participate more fully in their activities of choice free from any avoidable effects of their epilepsy.
Our courses include a nationally accredited unit for support workers offered in conjunction with Red Cross College. There are also three shorter courses which cover issues such as how to identify seizures, how to reduce risks and how to observe and record seizures. Two of these courses are relevant for people living with epilepsy regardless of whether they have an additional disability.
The course includes video content of people with disability and epilepsy and their family and carers, various experts such as neurologists and nurse educators. Assessment requirements for the TAFE qualification will be met through online assessments and online support from epilepsy and disability specialists.
On Tuesday, 12th June 2018, the Victorian Shadow Minister for Disability Services, the Hon. Tim Bull MLA launched Epilepsy Action Australia’s innovative new Epilepsy and Intellectual Disability Training Course at La Trobe Financial in Melbourne.
These courses were made possible with significant support from The Ian Potter Foundation, Gandel Philanthropy and John T Reid Trust and we sincerely appreciate their backing.
You will find these courses on our website here.