Life Course Working Group
Primary Role
To provide strategic advice, counsel, and options to the EACD General Management Committee on how to adopt and integrate a life course approach within EACD.
Objectives of Working Group
To anchor a Life Course approach within EACD’s actions and activities to serve needs in this area, the work group is expected to advice the GMC on the following three key questions:
- How can EACD contribute to the acceleration of dissemination of known knowledge on the life course of diverse childhood-onset developmental disabilities? And whom are we trying to reach?
- How can EACD identify goals and priorities for further knowledge creation to better understand the life course of diverse childhood-onset developmental disabilities? What structures are needed, for example to facilitate active collaboration and/or to promote new research initiatives?
- How could the lack of existent service models, and the large knowledge gap in adult service providers in particular be addressed in the European region? How do we put EACD in the forefront of a change from pediatric focus to life course perspectives?
Members
Co-Lead Emma Livingstone, SLT, PWLE UP - The Adult Cerebral Palsy Movement UNITED KINGDOM Member Jennifer Ryan, PT, PhD Royal College of Surgeons in Ireland (RCSI) IRELAND Member Reidun Jahnsen, PT, PhD Oslo University Hospital NORWAY Member Mark Peterson, MD, PhD University of Michigan MI, USA Member William Sherlaw, PWLE Ecole des hautes études en santé publique FRANCE | Co-Lead Elisabet Rodby-Bousquet, PT, PhD Lund University & Uppsala University SWEDEN Member Jan-Willem Gorter, MD, PhD UMC Utrecht THE NETHERLANDS Member Hrachya Badeyan, MD, PWLE EACD Families & Users' Forum Coordinator ARMENIA Member Alain Chatelin, PWLE, PhD La Fondation Paralysie Cerebrale FRANCE Member Gwenaël Cornec, MD CHU Brest FRANCE |
Background
In respect to the improved survival into adulthood for most childhood-onset disabling conditions and the different concerns and challenges this brings, there is a growing acknowledgement that what we plan for, do or not do, today influences the life course and future life chances of people with childhood-onset disabilities of all ages over their entire lifespan. However, there is a lack of existent service models, and a large knowledge gap, particularly in adult service providers. This brings a number of concern and challenges which need to be considered. As such, there is now among other a need for (i) Data to better to understand life course of diverse childhood-onset developmental disabilities; (ii) Acceleration in the dissemination of known knowledge; (iii) Development of further knowledge by active collaboration and promoting research. Therefore, the EACD GMC installed in May 2022 a Life Course Working Group to provide strategic advice, counsel, and options to the EACD General Management Committee on how to adopt and integrate a life course approach within EACD.
Accountability
The EACD Life Course Working Group is accountable to the EACD General Management Committee for the stated duties and responsibilities.