Epilepsy Management in the Disability Sector: Survey Results

The Epilepsy Foundation of Victoria, in partnership with Bendigo Community Health Services (BCHS) and Flinders University, have sought to develop an epilepsy management protocol for the disability sector and create a standardised self-directed epilepsy management plan and resources for people and families living with a disability to take to any disability service provider they choose. This project is funded by the Practical Design Fund, an Australian Government program that supports initiatives to identify practical ways to prepare people with disability, their families and carers, the disability sector and workforce for the transition to DisabilityCare Australia: the national disability insurance scheme.  
In order to inform the development of this protocol and national Epilepsy Management Plan, this research sought feedback from disability service providers, people living with epilepsy and their families to gather information on how Epilepsy Management Plans are currently conducted across Australia.  
Participants were invited to complete an 8-page electronic survey which collected information on current knowledge of epilepsy, how epilepsy is currently managed by disability service providers (do they have an epilepsy management plan, what information does it include), and how the individual and family are engaged in the process of epilepsy management, support and planning. An invitation to complete the Staff Survey and Individual & Family Survey was emailed to 30 Disability organisations across Australia. In addition, the surveys were advertised in newspapers in each State and Territory.  Interested participants completed the survey online via Surveymonkey. A total of 172 Individual & Family surveys, and 46 Staff surveys (valid) were returned by the cut-off date (5.4.13).  Ethical Approval was granted by the Flinders University Social and Behavioural Research Ethics Committee (Project No 5965) prior to commencement of the project.