The Dispositif intégré pour les handicaps rares : Integrated apparatus for rare disabilities
Instances of rare disability are often unrecognised, isolated, and difficult to apprehend.
The relevant stakeholders do not possess the necessary skills and resources to respond entirely to the general needs of the person with rare disability. One of the major challenges facing the organisational set-up of the Dispositif intégré is that of responding to the complexity of cases of rare disability as they follow the care-recipient over the course of their life, and that of assisting them in the expression of their choices so that their life ambitions can be supported by their care-givers.
The goals of the Dispositif intégré
Lead collectively by the CNSA and the DGCS, the Dispositif intégré handicaps rares relies on a host of concerted actions involving: the Centres nationaux de ressources handicaps rare (National resource centres for rare disability, CNRHR), federated within the Groupement national de coopération handicaps rares (National consortium for cooperation on rare disability, GNCHR); and the Equipes relais handicaps rares (Rare disability relay teams, ERHR), connecting the whole of France to local resources, intervening on a local basis, on behalf of people with rare disabilities. Through a ‘cross-fertilised’, interdisciplinary, and coherent approach among stakeholders, the organisational set-up of the Dispositif intégré is designed to:
- avoid families’ loss of confidence and poorly adapted support mechanisms
- limit, as far as possible, interruptions to the care-recipient’s life, in striving to ensure a coherent and collective response to all persons with rare disability, regardless of how they come to the attention of the care and support apparatus
- bolster existing resources and create an environment conducive to the decompartmentalisation of care methods offered by the various support professionals.
Essential working principles
The Dispositif intégré, including nowadays the treatment of rare disability, has brought about changes in organisational set-ups and professional practices.
This method, innovative for the medico-social sector, rests on three essential principles:
- shared responsibility, with common objectives for all stakeholders handling the same instance of rare disability
- self-questioning, on the part of each stakeholder, on their own work method and role, in order to bring into focus both their areas of competence and limits of intervention, and, thereby adopt common care procedures and tools
- a secure framework for sharing personal information between professionals while respecting and upholding data protection rights
These three essential principles involve, within the positioning of the integrated framework stakeholders, an unbroken conjunction between proximity and subsidiarity. All approaches and actions must respond to the following common interventions remit:
- the expression and participation of the care-recipient and of their entourage and family, and the recognition of their abilities
- an interventions logic based on the potential and capabilities of the care-recipient, and their recognition as a stakeholder and partner
- the promotion of the notion of an integrated apparatus, and recourse to clinical conclusions via pedagogy of doubt and questioning.
The main stakeholders comprising the Dispositif intégré
The Dispositif intégré is available – to best respond to the needs of its demographic – thanks to the mobilisation of various local, regional, national and international stakeholders. Through the territorial coverage granted by their various locations, they are able to facilitate the interactions of areas of expertise required to respond to any instance of rare disability at any stage of life.
At the national level: 4 Centres nationaux de ressources pour les handicaps rares (CNRHR) develop an expertise in cases falling under one of the (four) categories within the typology of rare disability:
- The CNRHR Robert Laplane: centered around deaf children presenting deficiencies associated with their deafness, children with complex language disorders (troubles complexes du langage, TCL) associated with other deficiencies or pathologies, and deaf or TCL adults with associated deficiencies
- The CNRHR CRESAM: dedicated to deafblind or deaf-and-visually-impaired children and adults
- The CNRHR La Pépinière: for visually-impaired children and adults with associated disabilities
- The CNRHR FAHRES: dedicated to children and adults with rare disabilities with a severe epilepsy component
At the regional level: 12 Équipes relais handicaps rares (ERHR) relying on local, départment-level, regional, and national resources to develop a cooperative dynamic between stakeholders in the support of people with rare disabilities.
At the local level: A multitude of skills developed by local stakeholders (people with rare disabilities themselves, families, professionals from the social, medico-social, and healthcare sectors, local non-profit organisations, etc.) are used to intervene locally in the vicinity of people with rare disabilities.
The Groupement national de coopération handicaps rares (GNCHR) hosts and facilitates the network of people involved in rare disability, whatever their level of intervention, and federates actions led by these stakeholders.
Together, the CNSA and DGCS are charged with the management of the Dispositif intégré pour les handicaps rares (Integrated apparatus for rare disabilities).