Understanding and managing cerebral palsy (CP) at every stage of life is the core purpose of a website co-designed by those who have the condition and can share their expertise from lived experience.
This year, World CP Day (6 October 2023) was focused on championing the innovation and new ideas that are led and created by people with disabilities, creating a world that is accessible, inclusive and equitable.
Aligning with this year’s theme of leading with lived experience to innovate for change, My CP Guide is led by a Steering Committee and Consumer Advisory Group to provide a wealth of expert, reliable, and accessible information for people with CP, by people with CP.
Symptoms vary significantly among the estimated 34,000 Australians with CP, as do their needs at different stages of life, demonstrating the necessity for accessible resources relevant to every individual, their families, and their support networks. My CP Guide captures the voices and perspectives of people at different life stages who experience varying challenges in managing their health and well-being with the condition.
User of this first-of-its-kind platform and an active member of its Consumer Advisory Group, Finn, explains how My CP Guide is bridging the information gap that currently exists in navigating CP while ageing.
“As an adult with CP, I’ve found that before this website existed, there was virtually nothing that was pitched to someone of my age when I was looking for health information,” said Finn.
“CP affects me and many others from birth, so most of the information resources out there are focused on parents of young children, which is certainly vital to navigate the early years of CP. But once you leave pediatric care, you walk into the wilderness with no information and no guide. As a young adult, I went about my life to the best of my ability, but as I got older, more and more health problems were arising and it took me a long time to connect the dots that they were CP related.”
“My CP Guide has really changed the information landscape. It is a credible source of information, I can search for information resources by category and filter by life stage, based on any particular issue I might experience. The beauty of it is that the hard work has been done — everything has been vetted as credible, current, accurate and helpful information,” said Finn.
The website assists Finn in advocating for his own needs, with the ability to read peer experiences and pick up on language used throughout resources, providing a place of authority to speak up on CP-related issues experienced.
My CP Guide was created by a consortium of Australian organisations, led by Cerebral Palsy Australia, and including Ability First Australia, Cerebral Palsy Alliance and the Cerebral Palsy Support Network. It is funded by an Information, Linkages and Capacity Building (ILC) grant to provide benefits for NDIS participants and other Australians with disabilities.
“The information gap is a global issue faced by those ageing with CP. My CP Guide is working hard to bridge this gap, stepping us through the stages of life by providing information relevant to people of all ages,” said Finn.
Menchie Khairuddin is a writer and Deputy Content Manager at Akolade. She is passionate about social affairs specifically in mixed, multicultural heritage and not-for-profit organisations.