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RESEARCH Member survey reveals CP challenges Response from CP Societymembers forms advocacy focus By ANNAMACKEYAND AMY HOGAN most, and what are some things that could be done differently to make things easier for individuals and their whanau. We wanted to get a sense of what the Society could offer with our services and what system changes we could advocate for at a higher level e.g., with the new health reforms and Whaikaha (Ministry of Disabled People). Thank you to everyone who took the time to participate. There were extensive and comprehensive comments given, which are all invaluable to the Society when it comes to future planning. Main Results What aspect of CP affects you most? 1. Mobility 2. Communication 3. Pain and Fatigue Members talked about many aspects of CP that affect them, but these were the top three. People offered different insights into aspects of moving around and how this influences their pain and fatigue. Communication and speech play a role in how people can access their community and wider support services. What are your biggest challenges relating to CP? 1. Access to funding for care/support 2. Access to health services 3. Advocating for yourself (or person with CP) One of the overall themes of the survey was a lack of access to support and services across all areas such as health and education. People also commented on not just access to physical spaces, but access to information, support, and ways to navigate the system. In particular, the delivery of services and resources. Areas for change 1. Accessibility 2. Access to health/ orthotics/equipment 3. Carer support 4. School/education 5. Housing 6. Employment When given the opportunity to talk about their concerns, people focused on the areas above. In general, there was a concern about accessing key community services such as orthotics and equipment, or consistent and reliable caregiving. People also In October 2022, the Cerebral Palsy Society put out a survey to our members asking for their opinions on topics that we could advocate for in different aspects of living with CP. The survey was part of broader efforts to understand howwe can best serve the community. Having up-to-date information about our membership needs is vital for advocacy planning. We were fortunate to receive a good response rate with members from all over the country and with different levels and types of CP. Thanks to all the members who participated, either online or as part of the Zoom focus group. The main questions we asked were around what aspects of living with CP affects you the 16 | THE REVIEW JAN–APR 2023