UNAPEI, the main French organisation advocating for the rights of persons with intellectual disabilities and their families, organized a conference on the role of family carers in the context of deinstitutionalization in Paris end of March. Unapei strategic priorities’ include the need to guarantee that persons with disabilities and their families receive support adapted to their needs. This conference was an opportunity to reflect on families’ needs, and also to call for recognition of the important role of family carers in the context of the de-institutionalisation of the social and health sectors in line with UNCRPD values. To this end, UNAPEI brought together a mix of NGOs, sociologists, support workers, family carers to take stock and prepare for the future. The participants highlighted the need for the reform of care systems in France, and how to value the expertise of family carers in the context of these reforms.
They also invited COFACE to put in a European perspective the French discussions on the shift towards community-based services with an overview of different trends across Europe, challenges, and the role of family carers in the transition towards community-based services. Liz Gosme, COFACE Director, reflected on the role of carers in the shift from institutional to community-based setting which is referred to as “transition inclusive” in French. She highlighted the EU and international context with the UNCRPD driving EU and national policy/legal change, the family dimension of the UNCRPD (as highlighted in the COFACE Disability charter for family carers published in 2012), the different EU actions such as legislation on accessibility, the European Pillar of Social Rights, the use of the European Structural and Investment Funds, the alliances such as the European Expert Group on the transition from institutional to community-based settings, as well as the work of COFACE to provide a voice for family carers in EU discussions on deinstitutionalization. Some key conclusions of the COFACE study of 2017 ‘Who cares?’ were presented, as well as the general trends highlighted in a 2017 Fundamental Rights Agency report. Liz Gosme finished with a reflection on the need to define the new generation of community-based services for and with families, using a life-cycle approach and recognizing support to families as key to a successful deinstitutionalization process in Europe.
More information is available here about the event: https://www.unapei.org/evenement/seminaire-unapei-aidants-familiaux/