Advocacy was once again a strong point for Epilepsy Ontario in 2014, with the organization playing a leading role in furthering awareness of the issues facing people living with seizure disorders, says executive director Rozalyn Werner-Arcé.
“One area that Epilepsy Ontario really saw a lot of success in 2014 was engagement,” Werner-Arcé says. “As an advocacy organization, we’re always looking to help people better understand issues people living with epilepsy are facing, and I really feel we’ve built upon relationships with politicians and policy makers this year.”
On March 26, Epilepsy Ontario representatives were at Queen’s Park for Purple Day to raise awareness among MPPs about the issues people with epilepsy and their families are facing. Epilepsy Ontario has been at the provincial legislature every Purple Day, a day of worldwide epilepsy awareness, since it began in 2008.
Based on feedback from government officials, Werner-Arcé says the Purple Day efforts have paid off.
“MPPs and bureaucrats are hearing about it, talking about it and remembering it,” she says. “This is good feedback and a reinforcement that we need to keep doing what we are doing.”
Werner-Arcé joined education and health experts from across Ontario in April to speak to Bill 135 — also called Ryan’s Law — which has since been re-introduced and passed a second reading as Bill 20 in October. She also addressed the committee about the need for encompassing legislation to better protect school children living with chronic conditions including epilepsy.
Bill 20 which has passed its second reading, is a private member’s bill introduced by Elgin-Middlesex-London MPP Jeff Yurek. It honours 12-year-old Ryan Gibbons, who died in October 2012 after suffering a severe asthma attack during recess at school in Straffordville, Ont.
Ryan’s Law is aimed at ensuring every child and teen with asthma attending Ontario public schools is allowed to carry an inhaler at all times in case of emergency.
Bill 135 has seen strides made to help protect students with asthma, but Epilepsy Ontario has been pushing for policymakers to bring other conditions, including epilepsy, into the fold, Werner-Arcé says.
“We need to see legislation (to ensure safety for students with epilepsy) for sure because (not all school boards) are not doing it willingly,” Werner-Arcé says.
Another annual event the organization attended this year was Epilepsy Action Day. Also held at Queen’s Park, this day is focused on continuing dialogue with the provincial government on issues people with epilepsy face.
This year’s Epilepsy Action Day was held Dec. 1, and largely focused on keeping children living with epilepsy safe at school.
Werner-Arcé and other Epilepsy Ontario and epilepsy agency representatives met with politicians including staff from the Ministry of Health and Long-Term Care and NDP health critic France Gélinas.
Meeting with Queen’s Park representatives on a one-to-one basis proved to be fruitful, Werner-Arcé notes. By taking time to speak with politicians individually the agencies’ representatives were able to get their buy-in as well as create and build upon relationships.
“We want to continue to work with government to ensure that people with epilepsy have access to the services that they need, whether it’s through getting treatment and community-based care, or keeping kids safe at school and making sure that they get the kinds of educational supports they need so they can reach their full potential and develop into productive, contributing citizens,” Werner-Arcé says.
Writer: Deron Hamel
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