UP co-founder and CEO, Emma Livingstone, reports on a momentous EACD conference.
I have just returned from the European Academy of Childhood Disabilities conference, held this year in Bruges. Last year in Ljubljana, I had the privilege of giving a keynote where I challenged the academy – in a nice way – to consider adopting a Life-Course Approach.
I was privileged to be asked to co-chair a working group to move forward on this agenda. with physiotherapist, Elisabet Rodby Bousquet who lives in Sweden and has been implementing systematic reviews and follow-ups for young people and adults across Scandinavia. It’s been quite a year.
Over the last year Elisabet and I have been working with an incredible group of clinicians and researchers from all over the world – all of whom are committed to supporting the lives of people with child-onset disabilities to live well across the lifespan. (Dr Mark Peterson, Dr. Jennifer Ryan, Dr, Jan Willem Gorter, Reidun Jahnsen, Hrachya Badeyan, William Sherlaw, Alain Chatelin, Gwenaël Cornec)
Together, we have been working together to understand how can a Life-Course approach improve lives and outcomes of people living or concerned with childhood-onset disabilities? This took the form of a survey to EACD members and their colleagues and an online focus group.
This year in Bruges, we were able to present the results of the research we have carried out and provide concrete evidence of the benefits of adopting this approach. We also worked together with attendees who took part in our Special Interest Group to create concrete action points for the integration of the Life Course approach in the EACD.
This year’s conference was a huge and important step for the Life-Course Approach. This culminates in the EACD unanimously voting for a name change, so it’s now the first and only academy to be known has The European Academy of Childhood-Onset Disability. Indeed, this conference and the name change is a big milestone in the development of the EACD, reflecting how we think and talk about people with child-onset conditions. Now we have to embrace it and turn ideas and words including Life-Course, health and development into action.
Next year, the conference will be bigger than ever and we will be submitting a proposal for a half day pre-conference that will focus specifically on child-onset disabilities through the Life-Course, for EACD/IAACD 2025.
This is how great collective efforts work and the power of diverse thinking.
What is the Life-Course Approach (LCA) and what are the benefits?
The LCA represents a science-based tool for rethinking practice and advocating change. It takes on board findings and theories from both social and life sciences.
- A Life-Course Approach will favour:
- • Person centred care and relational autonomy.
- • Shared goals between people concerned and health and social service professionals.
- • Matching provision across the whole lifespan to people’s needs.
- • Redefining cerebral palsy and other childhood onset disabilities to include adult life.
- • Ultimately implementing an LCA approach will lead to better health, better lives and respect for people’s rights.