The Australian & New Zealand Cerebral Palsy Strategy

In Australia and New Zealand the physical, medical, educational, and social needs uniquely associated with cerebral palsy (CP) remain under-recognized at both the societal level and within the political arena. These lifelong and complex needs are therefore often unmet. Siloed approaches to health, education, intervention, disability supports, accommodation, infrastructure planning, aged care, and research are common, and there is no integrated plan with a lifespan perspective for most people with CP. Advocacy, through development and implementation of national strategic objectives, acts to amplify and focus the voices of people with lived experience and their families. The effectiveness of this approach has been seen with other populations, such as those with congenital heart disease, autism, and multiple sclerosis. Clearly articulated strategies typically result in increased targeted funding for services and research and optimized outcomes because the strategies become blueprints for governments and decision-making. Our goal was to establish a strategic blueprint for CP, informed and shaped by the community, that would guide actions aimed at addressing the specific complexities of CP. Aligned with international conventions, legislation, and government initiatives, The Australian & New Zealand Cerebral Palsy Strategy (The Strategy) is seen as vital for achieving needed improvements in outcomes for people with CP and their families. To achieve our aim, we established an Australian and New Zealand collaboration to work with the community to develop The Strategy, and then undertook an extended process of iterative community consultation. The Strategy Collaboration comprised people with lived experience and family members; representatives from leading service providers in Australia, many of which were established by people with CP and their families and which operate under the leadership of people with lived experience; representatives from an advocacy and support organization in New Zealand; and representatives from the peak body for CP in Australia and New Zealand. The resultant strategy presents the collective perspectives of stakeholders reflecting the priorities of people with CP, their families, and professionals in the field. It aims to be used as an evolving document – updated as objectives are met and new directions identified. The overarching goal of The Strategy is enhanced quality of life: this is a necessary component of the four goal areas and a benchmark with which to measure success. Priority objectives, along with foundational and goal-specific success indicators, provide measurable and achievable outcomes for the current 5-year Strategy term. The four goal areas are: (1) Inclusion and Engagement: to promote inclusion and active participation in all aspects of life, at individual, community, and societal levels, for people with CP and their families. (2) Health and Well-being: to improve health and well-being outcomes across the life span; to minimize impairment, maximize function, and ensure life expectancy is in line with the broader population. (3) Intervention and Disability Support: to provide effective and timely evidence-based treatments and supports to ensure optimal outcomes for people with CP and their families. (4) Prevention and Cures: to reduce and ultimately prevent the future occurrence of CP and reduce the impact and severity of the damage to the brain for those with CP, with the goal of finding cures. The Australian & New Zealand Cerebral Palsy Strategy exists because of the large network of contributors who engaged with its development. In particular, the Australian & New Zealand Cerebral Palsy Strategy Collaboration, who wrote and developed The Strategy; the expert panel, who provided critical review and feedback; and importantly, the people with CP and their families, who generously provided their candid and honest experiences, opinions, and priorities. The full Strategy and supporting documentation, including infographics, easy English and language translations are for use by the community and can be accessed by visiting www.cerebralpalsystrategy.com or emailing info@cerebralpalsystrategy.com.au.