From 31 January -1st February 2014, the partners met for a kick-off meeting in Antwerp, in one of the University’s historic buildings, the “Grey Sisters”.
At this occasion, a mini-symposium has been organised with the theme “Who are they? Children with complexes and intense support needs: Towards a more inclusive and more active high quality life”.
An abstractbook of the mini-symposium is available here.
The idea of the mini-symposium was to invite...
key people working in the domain of severe disability, in order to involve them right from the start. Next to 18 international participants, 55 participants attended from Belgium and the Netherlands. We succeeded rather well in getting the “right” people present, e.g. the involvement of the main professional networks (Multiplus, SEN), Parent-Professional networks in Dutch-speaking (Rett-syndrome Foundation) and French-speaking Belgium (AP3), the official governmental funds (VAPH and AWIPH), and delegates of many centres caring for children with complex disabilities, and the president of the European Association of Service Providers. The objective of this symposium was to create a better understanding of the living conditions and needs of care and support concerning activation and participation in the various domains of life, of children and youngsters in a situation of complex disability, who often remain nearly totally dependent on others, often labelled as having “profound and multiple disability”, to introduce partners to the public and to each other, and to present new models of assessment of quality of life. In the morning there were three highly inspiring lectures. The symposium had the honour to have Dr. Elisabeth Zucman from Paris as a keynote speaker. She is the “eminence grise” in this field, founder of numerous initiatives to improve the lives of children with very severe disability. She talked about the history and present challenges of supporting children with “polyhandicap” as they are called in France. We have come a long way from the time where these children were just lying behind curtains and doing nothing. Claudia Claes of the E-QUAL Centre of Ghent University spoke about Shalock’s model of quality of life. Based on a social model of disability, she presented different new qualitative as well as quantitative approaches to assess it. Bea Maes of the Catholic University of Leuven (BE), president of the Special Interest Group on Children with Profound Intellectual and Multiple Disabilities (PIMD) of the International Association of the Scientific Study of Intellectual Disability (IASSID) presented the “new” thinking Multiplus, an expert centre on PIMD. In the afternoon, the Enabling+ partners presented their work. Very important as well were the parents (Jacques Lodomez of AP3 and of the Rett Syndrome Association), who represented the voice of the children.
From 25-28th September 2014, we had our second Enablin+ partner meeting in Varna at the border of the black sea in Bulgaria, at the Karin Dom Centre.
A report of this meeting is available here.
Yearly Congress EMB (in Dutch)
Nieuwe Buitensociëteit Zwolle
Third Conference of the Belgian Down syndrome policlinics and Parent's Associations
UCLB Campus - Erasme