World CP Day: Cerebral Palsy Canada Network accelerating through collaboration

October 6, 2017

CP Canada Network is working towards a life without limits for people with cerebral palsy (CP) every day, promoting awareness, accessibility, and effective programs and services across the country.

CP is the most common physical disability in children, affecting more than 50,000 Canadians. Early diagnosis and treatment of CP, as well as support for families has priority for Kids Brain Health Network from the very beginning. Dr. Darcy Fehlings, lead of the Network’s CP research group based at Holland Bloorview Kids Rehabilitation Centre in Toronto has been a consistent champion for connecting the research community with community organizations that actively serve and engage children with CP and their caregivers. 

She was one of the instigators of a gathering in Vancouver on World CP Day in 2013, when for the first time, provincial CP organizations came together to create a national presence for CP. “Bringing together stakeholders across the country has truly helped to bring an advocacy voice for children with cerebral palsy,” says Dr. Fehlings. 

Since then, KBHN researchers and the CP Canada organizations have been working together to set focused goals and grow the CP Canada Network in both size and scope.

CP Canada Network helps Set Research Priorities and More

Dr. Fehlings emphasizes how the establishment of the CP Canada Network has been key in working towards a national strategy and setting effective research priorities to improve the lives of people with CP in Canada. While the Network has continuously expanded and developed, their overarching priority has remained the same: advocacy. Involving CP families in all aspects of the Network’s activities is crucial in ensuring the families’ needs and priorities are addressed.

Janice Bushfield executive director of the Cerebral Palsy Association in Alberta , a key leader in the CP Network, says establishing a strong communications hub is a priority, to strengthen connections among all the provinces and provincial organizations, but also researchers, families, and policy makers. With a recent grant from the federal government obtained by KBN Researcher Dr. Keiko Shikako-Thomas, a website is currently in development. Bushfield says the website will play a key role in raising awareness for CP and encouraging research initiatives. With the establishment of a strong online presence, the Network can also promote accessibility, increase community engagement, and develop consistent programming across Canada.

The Power of Collaboration 

The biggest challenge the CP Canada Network is facing is size and resources. Lack of human resources, time, and funding are barriers to greater participation and further development of the Network. This is where collaboration is essential in Network growth. Janice Bushfield’s vision from a local CP organization’s perspective is having the largest organizations act as a resource to grow organizations in other provinces. “By working together organization to organization, we can leverage one another’s best practices and create programs and resources that would work across multiple regions, thus initiating best practices and consistent programming on a national scale.” With additional collaboration efforts with the medical community at large, the Network is able to work towards pushing these goals and ensuring appropriate programs and therapies are being administered throughout Canada.

What’s next for CP Canada?

The grant supporting website development will also expand the network and identify the information and resource needs for children with CP across the country. The provincial associations that are active in the Network have already significantly increased and improved their programming efforts in the few years since collaboration began. If this trend continues, “we will absolutely grow, and hopefully local champions will arise in the provinces that don’t have a CP association or representative already,” states Janice Bushfield.

The next few years are going to focus on regularly consulting and engaging stakeholders in order to push a national strategy. British Columbia CP lead Feri Dehdar states, “Our vision is to ensure children and adults with CP have the same rights and opportunities as anyone else in the society. We believe that everyone can live a life without limits regardless of who that person is.”

Writer: Natasha Kothary