An interpersonal network to mobilize organizations Towards a new model of cooperation?

1. An interpersonal networkto mobilize organizations Towards a new model of cooperation? Jean Briens Directeur Ets médico-social Déficiences Sensorielles Jacques Cartier St Brieuc Président Association Phare d’Ouest Serge Bernard Directeur CRESAM Poitiers 27 mai 2014 - Marseille - SOFMER

2. Historical data: The national plan rare disabilities in 2009 The Social Organization and Social Medicine 2009-2013 plan for rare disabilities determines priorities and processing conditions , organization and development of the services offered to children and adults in small numbers who face complex and specific needs A national and even international level is required: To develop knowledge of a limited number of populations , their needs in terms of very specific expertise, built up response abilities  to organize, strengthen and set up into a network these highly specialized expertises that can not be present everywhere The National plan for Rare disabilities aims to consolidate, develop and make accessible rare multidisciplinary expertises required to assess and support people in this situation and their families in their daily lives , at home or in institutions It is part of the EU Guidelines on rare diseases, which recommend support for the networking reference centers and national expertises as well as recognition of the roles of the people involved and their caregivers expertise (2009 CNSA)

3. Référentiel des situations types de surdicécité

4. Identité internationale et historique de la Surdicécité (Deafblind International) • «(…) a uniqueand isolating sensory disability resulting from the combination of both a hearing and vision loss or impairment which significantly affects communication, socialization, mobility and daily living. LES 3 mots CLES : Communication- Mobilité- Accès à l' information - (…) The implications and impact vary considerably, particularly between those born deafblind and those with acquired deafblindness. Most people who are deafblind have some degree of functional vision and/or hearing. They may wear glasses or hearing aids to maximize the use of their available vision and/or hearing. NES SOURDAVEUGLES / DEVENUS SOURDAVEUGLES(…) greatly influenced by communication and connection to family and friends, appropriate developmental, educational opportunities and employment opportunities, recreation and leisure activities and family support. » QUELLE INCLUSION ?

5. Sharing reactions in 2009 • Health and social actors unaccustomed to working together between institutions, but ... • A small group of professionals accustomed to working together on complex situations of deafblindness • A common distrust of the false hope of money, so … • Need to block inopportune initiatives which aim is to make money

6. The definition of common values • Intervention with "disabled" is a personal commitment • "Users" and their families are “knowing” people • Conviviality between people is needed to power our motor • Knowledge must bedeveloped • Interacting of knowledges is necessary for the progression of practices

7. An idea: structuring an association of persons, giving voice to people • Individuals from different institutions of Brittany and 3 bordering regions • An association initially centered on one rare handicap : deafblindness • Professionals and users representatives, all staff members • Professionalsfrom the National Resource Center • People interested in the subject of deafblindness • A commonconcern: • What, how and where can I help?

8. Achievements that give the desire to go on • A conference in Rennes in 2010 under the snow with 200 people : "Acting and power to act" • A "users" meeting per year on a theme widely chosen by them and their families • MDPH, the compensatory allowances in Medical Foster Home, the legal protection of adults, the transmission of heritage, surgical news • Two annual meetings for all professionals interested organizations and users representatives • Construction beginning in 2012 with a university degree "referent in deafblindness" with the Faculty of Medicine of Rennes • Taking part in reflection about a plan for Low Vision Low audition in Brittany, working on the new Rare Handicap plan

9. In the heart of a national system • Functioning largely based on the trust between members and their mutual understanding • Based on a partial knowledge of each person that requires to meet other • The satisfaction of being "noticed" in a national report as a relevant system • The opportunity to open up to other forms of rare disabilities and to share knowledge in the deployment of relay teams • The ability of public authorities to rely upon a functioning network that can be mobilized outside its starting field. • The "surprise" of public authorities to consider that a non-bureaucratic organization can link : • Between health, social and medico-social, • Between practice and knowledge

10. In conclusion • We serve organizations but we believe that it is the men and women who have to pilot them • We believe that the Co building between users and professionals is one of the keys to change in practice: the need to listen to each other before designing a response • We believe that complexity is an asset to compel our old institutions and therefore ourselves to work together