People with epilepsy living in all regions of the province can expect to have increased access to consistent educational resources and supports in the next three years, thanks to a project funded by the Ontario Trillium Foundation.
Epilepsy Ontario has received funding for the From Isolation to Inclusion project, which aims to enhance the capacity of community epilepsy agencies across the province to ensure people with seizure disorders have adequate access to resources and information no matter where they live.
The Trillium Foundation is providing $280,800 over three years to alleviate the long-standing challenge Ontarians with epilepsy face when they live in more remote regions — northern Ontario, for instance — and need to access community and educational resources, says project manager Nikki Porter.
The project’s first phase is dedicated to identifying the best education and support programs available to people with epilepsy across the province and make them available to all people with epilepsy and their families — wherever they live.
Phase 2 is focused on outreach, says Porter.
“We want to reach more people who have epilepsy and their families and more community stakeholders to connect them to community agencies,” she says.
“That would help people with epilepsy, especially if they’re newly diagnosed or they don’t know much about their condition. (This will) give them a better handle on what’s going on — and hopefully give them the tools to be better self-advocates.”
Key points of the project include:
– Bringing together epilepsy agencies to share best practices and resources that have largely only been available to people in certain communities
– Adapt programs and resources so they are applicable to local contexts
– Identify gaps in programs and materials
– Update current tools where needed
– Develop innovative new education, support and outreach tools to fill identified gaps and drive the mission of epilepsy agencies forward
In short, the Trillium Foundation’s funding is helping Epilepsy Ontario collaborate with epilepsy agencies to create a project that will help eliminate barriers faced by many people living with seizure disorders.
As part of her role, which was created for the program, Porter is forming a working group made up of representatives from several epilepsy agencies across Ontario as well as epilepsy information specialist Suzanne Nurse to co-ordinate efforts.
A web designer, graphic designer and market research team will be utilized to help see the project through to completion.
Looking to the long-term, Porter says the best possible result from elimination of barriers would be for more people with epilepsy to have access to social, employment and educational opportunities.
“Full participation in your community is the best possible outcome — to be a fully participating member of society, to be able to go through life with the tools to break down any barriers you come across and to come across fewer barriers,” she says.
Writer: Deron Hamel
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