Transformative journeys in childhood‐onset disability with the AACPDM

As we prepare for the 72nd Annual Meeting of the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) this autumn in Cincinnati, Ohio, our theme is ‘Transformative Journeys’. Throughout its rich history, Cincinnati has been a celebrated site of such journeys; and in the 21st century our field of childhood-onset disability is likewise always moving onwards. Much has changed and continues to change, but we remain focused on the journey. Where has the transformative journey taken us so far? And where will we go next? As we think about what has developed in the last couple of decades in the care of people with cerebral palsy (CP), we see real progress. Key steps included dedicated and robust efforts to define and classify CP. As we built a consensus on these fronts, we fueled growth in research and fidelity in clinical communication. At the same time, we have seen our understanding and conceptualization of childhood-onset disability evolve. The disease-centered model has faded as a broader and more comprehensive perspective is adopted. The journey has embraced the International Classification of Functioning, Disability and Health (ICF) model and a societal view of disability. Clinicians, researchers, advocates, and public officials have all benefited from a new language to discuss the lives of people with CP, their families, and the communities we share. Vivid and meaningful guidelines have arisen from mapping the ICF model directly to the circumstances of young people with childhood-onset disability, and specifically CP. These changes have reinvented how we conceptualize and interpret all that we do. How refreshing it is to know that facilitating a child’s participation in sports or integration with a community arts group really should be at the core of our work! The dyad of physician-patient has expanded to family-centered teams; much research now involves patients and families at every stage. We are the benefactors of the redefinition of care teams as we have a richer and more salient understanding of the work at hand. Another leg of our journey involves utilizing evidencebased practice and translating our knowledge into clinical care. Not only have we produced more and more highquality research to improve care, we have benefited from accessible, rigorous analyses of that research which facilitate implementation of best practices. Work such as the AACPDM’s care pathway on hip surveillance (https:// www.aacpdm.org/publications/care-pathways/hip-surveilla nce) and interventions for dystonia illustrate these sorts of results. What a long way we have come to reach this stage. Looking back, it is clear how much effort and investment it required. Looking ahead, there can be no doubt that our ongoing attention and passion will bring ever greater rewards. I sincerely hope that you will consider embarking on your own transformative journey and join us in Cincinnati on the banks of the Ohio River for the 2018 AACPDM Annual Meeting. This year we will have an orthopaedic surgery day, pre-conference courses on pain and infant assessment, as well as keynotes on the genetics of preterm birth, knowledge translation, the Eating and Drinking Abilities Classification System, and more. If you cannot attend, please take advantage of the online offerings to explore the new research being presented and watch our famous plenary sessions. As we who practice in the field of childhood-onset disability work together, there is no doubt that the journey will be transformative for all of us. I look forward to taking some of the next steps of journey together with you in Cincinnati.