Easy To Read and Understand
FALC
The FALC makes information simpler and clearer.
The FALC is useful to everyone, especially people with disabilities.
The challenges: “understanding what is happening to me, clarifying and supporting my choices”
Since the creation of the association, we have been committed to creating tools to explain the syndrome linked to MYT1L gene to diverse and varied audiences: families, physicians, paramedical and educational professionals..
It seemed essential to address directly to people with MYT1L syndrome.
Most of them were diagnosed late.
Families and patients were able to hear different informations.
It seemed important to put the patient back in the understanding of HIS difficulties compared to HIS difference, and also to see that progress and help are possible.
This tool is also intended to be used by doctors during diagnosis or as support.
And more broadly to be shared with all those who share daily activities with the person carrying MYT1L syndrome.
- Institutional FALC file
"I understand my difference"
To carry out this project, we worked with the DéfiScience and AnDDI-Rares health sectors. Working groups were carried out with health professionals, professionals trained in Easy to Read and Understand (FALC) and association representatives.
This project is part of the citizen and societal approach to put the person in a situation of disability, and in particular with a disorder of neurodevelopment, at the center of his life course, by promoting his self-determination as much as possible.
The FALC sheet "I understand my difference" is several pages long, don't panic!
We have heterogeneous profiles, we have tried to be as exhaustive as possible.
We would like to thank the families who have tested this sheet to improve and validate it.
The sheet is in 3 parts:
-
Explanation from the genetic point of view
-
Focus on what is difficult for the person
-
Examples of help to support progress
The reading can be assisted and carried out in several times.
In part 2 (point on what is difficult) there are small circles in front of the sentences. Check what concerns the person.
You can also color in to graduate the difficulties: “I can do it” / “it's a bit difficult” / “it's very difficult”.
This sheet can be dated and can be repeated at significant intervals to see the progress made.
Click on the image to get and download the file.
Even if the picture is in french, the FILE IS IN ENGLISH.
"I understand my difference"
FALC sheet editable
We provide you with a "MODIFIABLE SHEET" version
For example, you can:
- Sort and adapt to your situation for parts 2 and 3,
- Color descriptive sentences
The elements are in a table, just select a row to delete it or change the coloring.
Click on the image to get the document.
We ask that you do not modify the footers that refer to the institutional record, as well as the descriptive elements of the FALC at the bottom of the last page.
!! IN PROGRESS: an adaptation of GAME to manipulate information and interact even more easily with people with MYT1L syndrome is in progress. We are continuing the working groups on the subject in 2023/2024. A little more patience ;-)
We remain at your disposal toHELP YOU and for any information at the following email address: extravaillants@gmail.com
Editable sheet
sample selection
FALC Transition Sheet
suitable for MYT1L
Page 2 of 7
"I understand my passage
from pediatric monitoring to adult monitoring:
This is the transition to the hospital "
FALC sheet adapted MYT1L