Skip to content. | Skip to navigation

Home NETWORK-FIREFLIES Réseau Lucioles, a french network for persons with severe mental disabilities, Lyon, France

Réseau Lucioles, a french network for persons with severe mental disabilities, Lyon, France

  • Social Life : Other
  • Europe : France
  • Experience Index Card

From Creators the Dec 11, 2017

Facilitate the pooling of experience to give guidance to professionals and families and thus contribute to improving the quality of care and support for people with severe mental disabilities, it is the aim of Réseau Lucioles



  1. The association 'Réseau Lucioles', origin and project

    The network-Réseau Lucioles ( Fireflies)  name comes from an idea of the children of the founder, 14 years ago: the association would be a network of small lights to light up the night!

    The network-fireflies association was created in January 2004. Initially, the offices were installed in the garage of a private home then in more functional premises to Villars Dombes when our means allowed him to us. Head office is based at one of our patrons, DS Finance, at the Cité international in Lyon. Our offices will be installed there shortly (in January 2018)


    It is an non benefit association  that count 28 members, the majority of members resident in Auvergne-Rhône-Alpes, but they are also native to Provence-Alpes - Azur and Paris side. They're parents, motivated professionals, people of "civil society".

    We have almost 1000 members, i.e. identified persons who have declared their solidarity with our cause: they recommend the work that we do and participate (1/3 families and 2/3 of professionals)

    And then 3,600 people registered to our Newsletter (10% of families)


    Relevant disability is severe mental disability. What is the exact scope of this type of disability?

    By the numbers: of 60 000 to 120 000 people in France according to sources (key figures of disability (CNSA) / collective Expertise on intellectual disabilities INSERM 2017). These people will be accompanied by professionals and their families; either an estimate of 300 000 to 600 000 people.

    Severe mental handicap = severe intellectual disabilities to profound... no access to Word (or a "significant" speech) and need for support for all acts of life: dressing, washing, eat, communicate, play, sometimes move.



  2. The purpose of the network


    The purpose is one sentence: 'How to accompany at the best people with a severe mental handicap?'

    The quality of care and assistance to these people varies widely depending on where you are in France and according to the people who are involved with them. There is very little consensus at the national level on how to accompany them and care for them. People with severe mental disabilities so "come" to goodwill, at the level of knowledge and inspiration from professionals who accompany them. On the ground, the best and the worst rub shoulders.

    While for a so-called 'normal' person, it is organised for assessment and pain management, sleep disorders, and eating disorders, the development of autonomy, education etc., for those people with severe intellectual disabilities, these benchmarks are to be built. Unfortunately, the research is poor in this area not signposted by the public authorities so that the best hopes of current progress through the sharing of experiences/practices of the field. It is on this subject that placed Réseau Lucioles: facilitate the pooling of experience to give guidance to professionals and families and thus contribute to improving the quality of care and support for people with disabilities mental severe.


     Have you identified a particular expectation for this initiative from the families and the entourage of people with severe mental disabilities?

    I am the father of a disabled girl of 24 years old and since very early I put in community life, especially in the parents association focused on the pathology of my daughter, a rare condition. For years, I heard and analysed by investigation many questions of families and professionals, which echoed what I felt.


Why have you added training to your range of services?

Of medico-social and sanitary professionals do not have during their studies training on disability aside MPAs (unaddressed aid) and maybe a little nurses... Currently, professionals form the handicap, at the beginning of their journey, through placements in institutions they have during their initial training. Then by immersion in life active and by their course of training defined according to their inspiration or that of their manager, these professionals are progressing or wither in their very demanding craft.


Did you have a final goal by creating the network?

Yes, our goal is to contribute to improving care and support for these persons to improve their quality of life and that of their loved ones




  1. How network-fireflies work?


    What were the first services implemented in priority?

    First, we sought to identify homes of experiences to develop and we met the families and professionals of institutions to enhance, one by one, these experiences.

    In a second step, we conducted surveys to identify and recover more quickly more interesting experiences and their authors.

    We at the same time set up a website to disseminate all of the collected information.

    For a long time now, we animate collective work to develop guidelines, drafting of technical books, development tools; We also host thematic meetings, training... all of this is to transmit knowledge, landmarks and "tips and tricks" and encourage their ownership by the professionals and families concerned.


    What are today the areas of the network and services provided?

    Our drivers are the following:

    Action research, publications, films, trainings, meetings-seminars on various topics: education, communication, recreation, nursing, family organization, parent/professional collaboration management. management of pain, the behaviour disorders, disorders of food, sleep, dental hygiene, cleanliness sphincterienne disorders...



    How do you gather information, experiences, practices? How do you choose topics?

    We collect, collect information during meetings, investigations, bibliographical research. We build cross-cutting collaborations involving parents, professional specialists, institutions, hospitals, universities...

    We choose the topics to deepen according to requests that come to us spontaneously our site or the testimonials we receive. We then evaluate the importance of the issue with our readers and if we decide to embark on a subject, we start with a State of affairs by distributing a questionnaire.

    We draft a publication per year on average.

    Our books are downloadable for free on the website of the association.

    Some of our publications are also available in paper format (if we find funds to finance the printing)


  2. The means of action


    On the human level :

    The association has 2 employees (a Manager and an Assistant), 28 members, 1000 associates and 3600 subscribers to our Newsletter.

    We are working with resources on disability centres, associations of parents and professionals (network R4P, GNCHR, UNAPEI, the ESCAP, the GPF... Alliance rare diseases, the team relay rare disabilities, hospitals) , medical and social institutions, the student network,...


    On the financial front  :

    We receive subsidies for local authorities, donations from foundations, companies, businesses and individuals. And according to the subjects on which we work we aid

ES by the CNSA, the ARS...



In terms of the methods :

We use techniques proven company to analyze needs, carry out studies, develop tools...



  • How do you evaluate today?



    We reached our goal in part... to the extent of a network controlled by 2 employees. Of many benchmarks gathered by us are still too few broadcast. However, the communication requires means that we should develop.


    What return do you have users on the network? What are the most requested services? Have you seen changes?

    Many people are faithful participants in our studies.

    We are often asked about technical questions we answer in collaboration with experts. We also connect caregivers and specialists. We receive spontaneous testimonials from parents and professionals on various topics and sometimes the thanks of those who have found an answer to their question with our help.

    Yes, we found some changes in some places where we have intervened in training.

    There are mostly since 2005 awareness... that makes our action, combined with many other helps evolve practices continued growth... Little by little, all initiatives come together to try to organize all...


    What challenges do you face in the animation of the network? What are its current boundaries?

    The association lacks human resources for lack of financial means: our annual budget is currently € 150,000 for what we do. We need to grow a little so that the progress of the projects of network-fireflies is not based on the energy of 2 people and to avoid usury: a co-facilitation would be desirable


    Could what advice you give to another Member of Handiplanet interested in developing such a network in his country?

    Attention, just as in the case of entrepreneurship, the network creator needs to share with peers to enrich its practices.


    Text based on an interview with Mr. Jean Marie Lacau, fireflies network Director








Canonical language : French
Add comment

You can add a comment by filling out the form below. Plain text formatting. Web and email addresses are transformed into clickable links. Comments are moderated.

Question: 50 - 30 = ?
Your answer: