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Cerebral Visual Impairment
Cerebral Visual Impairment
Start date: Sep 1, 2015,
End date: Aug 31, 2018
PROJECT
FINISHED
In all the EU countries, rehabilitation centres specialised in the support of children with visual impairment have more and more cases of children with central visual disorders and a low vision. We can say that our organisations have already developed methodologies and procedure for the support of children for which the visual impairment is due to a dysfunctioning of the eye, as an organ. When the visual impairement is caused by a cererbral background, the impact for children is totally different for the daily life and compensation means we use usually doesn't work. We think that more and more cases exist, this is due to the improvement of medical knowledge, and that we didn't identify before the causes of their visual impairment. This is a real issue for all the rehabilitation organisations in Europe, which want to develop/set up a process of evaluation and support, as a standard for our organisations.
Our experience with these children show us that they need to have a specific approach in the comprehension of the impact of their disabilities and in the support modalities to set up. And despite the improvement of scientific knowledge on this question, modalities of support are too often some individual processes, without concertation and very isolated, locally. It seems to us very necessary to work together on the development of a coherent and pluridisciplinary process at EU level.
In consequence, the objectives of our projet are to gather all the experiences of the partners and to develop a common process and common tools to improve the support of children with cerebral visual impairment.
Our activities will be :
- to develop a methodology for a pluridisciplinary assessment of central visual disorders, working with different professionals : ophtalmologists, orthoptists, neuropsychologists... This work needs to identify all the existing tools used, and where necessary adapt them to meet the identified needs of the target group, and to test them to validate the process.
- to develop an observation tool for use in association by relatives, parents, teachers. These observation would have to complete the professional evaluations and to share the knowledge of the child in the different life places.
The involvement of the environnement in this project is essential for the comprehension of disorders produced by the organic problem.
- to develop the structure/template of what we could call "an individual passport", in which could be describe simply for the environnement the impact of disorders in the life of the child.
- Afterwards, a period of experimentation of this process /tools is necessary close to a representative sample of children in each country, for the validation of this process.
- to develop also a training plan for professionals to enable them to use the process of assessment and the tools used for that.
We will develop the following methodology :
1- A phase of construction and setting of process for EU standard (October 2015 - April 2017) : Elaboration of a common process based on the medical diagnosis, the evaluation and shared observations (parents, professionnals) which will give some tools for this process : Evaluation tool, questionnaire for gathering the observations in all daily life places and the individual passport for a better comprehension of the child.
2- A phase of validation (April 2017 - April 2018) : the experimentation period with the aim to validate the process and tools carried out.
3- A phase of construction of a training curriculum (January - September 2018) : development of a training curriculum for professionals in the use of the procedure and the tools (in parallel with the end of the 2nd phase)
4- A phase of dissemination and communication (all the period of the project October 2015 - September 2018) with information by websites, flyers, to all existing networks (ENVITER, francophone network, EASPD, EBU, etc.) and a conference planned in September 2018 in each country.
The partnership will be leaded by MFAM, to ensure the follow-up of all activities with the aim, at the end of the project, to enable all kind of organisations concerned by the cerebral visual impairment, to use the tools/products carried out, for the benefit of children with cerebral visual impairment. During the project, partners will work together during the 6 planned meetings, and between according to schedule plan agreed by all the partners, and with existing tools (skype, e-mails).
The products carried out will concern at least 5000 users, and in the future more than this figure (especially if we count all the indirect users like relatives, parents, teachers...) and they will be free for use by all kind of organisations in Europe concerned by this issue.