Project Description

Challenge

More than 80,000 Canadians are living with Cerebral Palsy (CP). Yet, families often feel isolated and are unsure how to find services or where to access the most up-to-date CP-related information.

Project Summary

The Cerebral Palsy Canada Network (CPCanNet) was created to connect families to information through CP Associations across Canada, by acting as a hub for information. The website has information about services for persons with CP, research, and other resources.

The Network consists of CP association across six provinces—Ontario, BC, Alberta, Manitoba, Saskatchewan, and Newfoundland and Labrador—as well as health care providers, researchers, and other local CP organizations. By coming together as part of a consolidated Network, these groups can share ideas and stay informed about what each province is doing when it comes to CP.

Most recently, the Network developed a formal website (www.cpcanadanetwork.com). To inform what content would be included on the site, a survey was sent out to identify the needs of families living with CP. The survey found that many families are unable to find services related to leisure (such as summer camps) or life skills training (including adult housing). Many also expressed a desire for information on tax benefits and therapy options.

With this information, the website was designed to include a database of CP resources that exist across the country. These can be filtered by province, category (e.g., employment and assisted living), and age (i.e., child, youth, or adult). The website also keeps people up to date on research—including opportunities to participate in research and links to reliable sources of information—and on initiatives such as World CP Day.

Result

The Network ultimately serves as a way to keep people living with CP across Canada connected, and also aims to foster national partnerships to address the needs of those living with CP. Currently, the Network is working to develop a National Strategy for Cerebral Palsy. The purpose is to ensure that all Canadians with CP and their families have equitable access to the resources and services they require.  The website acts as an information hub and is a permanent resource to guide families towards appropriate information and associations within their local communities.

Funding

This project was part of the larger “Childhood Disabilities Communications Hub.” The hub was funded a total of $306,598 by participating partners.

Team

Principal Investigator

Keiko Shikako-Thomas, McGill University

Collaborating investigators

Annette Majnemer, McGill University

Research team

Mehrnoosh Movahed, McGill University
Jinane Zeidan, McGill University
Luca Martial, University of Cambridge
Farhin Chowdhury, McGill University

Partners

Cerebral Palsy Association in Alberta
Quebec Cerebral Palsy Association