Know Your Rights, Cont...
Dernière mise à jour 29 août 2021
Table of contents in this topic:
- Introduction
- First Thing To Do After The Genetic Diagnosis. Don’t delay in requesting for 100% support!
- The Journey Begins: MDPH and Disability Recognition.
- Schools: What Are We Entitled To?
- Schools, what are we entitled to? (page 2)
- The rights of the “voiceless”.
- Technical equipment and their support by from social security. (coming soon)
- Social investigations, psychological and emotional trauma: how to cope and what are your rights? (coming soon)
... continuation of the section, "Schools, what are we entitled to?", which begins on page 1.
*Attention, to know if you can benefit from the “Welcome For All” system, as well as to constitute the application file, you must call on a liaison or social worker who can transmit the request to the organizations concerned.*
We advise you to get closer to
- your Medico-Social Centre (CMS),
- your Family Allowances Fund (CAF),
- your local Centre for Early Medico-Social Action (CAMSP),
- or, by discussing the subject directly with the Director of the structure you are interested in.
If you have managed to obtain a place in a nursery via the “Welcome For All” system, plan a continuity of support and a transition from nursery to school, by running the system for a place in a Leisure Centre, as well as for the “Passerelle” program between the current childcare place and the establishment that will welcome your child afterwards.
It is today that we start talking about school enrollment, do not be afraid, but do not stay in the unknown waiting for someone to inform you of everything. Most people with invdupdel8p have significant motor disorders as well as language/communication disorders. This does not mean that your child does not have a place in public school, regardless of his/her developmental level. As mentioned above, an Accompanying Person with a Disability (AESH) must be granted to your child, but it does not automatically apply. Once again, you will have already had to go through the Departmental House of Disabled People (MDPH), have already obtained a recognition of disability for your child and with this “title”, you can thus make an additional request to your MDPH for the provision of an AESH.
We repeat again, do not wait a few weeks before the start of the school year to send your application, take care as soon as the school registration is done, the processing of the application can take, at least, 6 months!
In addition, be aware that the acquisition of cleanliness and walking are absolutely not prerequisites for entry to kindergarten.
The next step to prepare for the start of the school year for your invdupdel8p child: request an appointment with the school management and the national education district, to discuss your child’s needs, how the start of the school year will be organized, the school rhythm that would be better suited to your child, etc. Remember to write a “Communication Passport” for the new people your child will meet in his school life (and everywhere!), in order to best accompany him in the construction of these new relationships.
The more you explain your child’s specific needs, the better the teaching teams will be able to meet them.
Unfortunately again, the differences are huge from one place to another, and if you encounter barriers to reception in a school environment, it is better to be informed of your rights to defend the right of your child to be schooled in a public school, while respecting the specific needs of him/her and the various accommodations that will lead to academic development, from which s/he is entitled to live. If you have any questions or are looking for advice, do not hesitate to contact us, perhaps we will find, a still unexplored path, to help you in your child’s school career.
The rights of the "voiceless"...
First we must thank a young man with a genetic reshuffle other than invdupdel8p, who cannot speak, but who tells volumes through his tablet equipped with alternative communication software. We advise you to take a look at the site maintained by his Mother: “Trace your Voice”. It is this young gentleman who declares himself “speechless” and not “non-verbal” or “non-oral”. Indeed it is a subject of very in-depth discussion: the appropriate name of a person who cannot use his voice to speak, but who is quite able to communicate if we propose a tool provided for this purpose.
Communicating consciously and with the intention of relating to others sets us apart as a species. It is in our nature to want to express what is going through our minds, what makes us shudder emotions, describe what we observe, ask questions, shout with joy, cry with sadness and, we can add endlessly.
So what do we do when we can’t use our voice and sometimes, our hands, to communicate? This is why Alternative and Enhanced Communication (AAC) is so crucial in the life of a person with invdupdel8p. Of course, every parent hopes that one day his child could pronounce words with his beautiful voice, including saying “Mom” and “Dad”, but if this day is not guaranteed in the prognosis, we must not remain stuck only in his hopes. It is better to open your mind to other existing solutions in order to give your child or loved one an opportunity to express themselves with some means, or even an “alternative” way.
Refer to our section, Patient Journey, for more details regarding Alternative and Enhanced Communication (AAC), because in this section we address the legal aspect regarding the human right to be able to communicate, access to which is often surrounded by unjustified conditions, and based on myths and preconceived ideas that are false.
Created in June 2021, following the 5th refusal of the Departmental House of People with Disabilities (MDPH), for a request for support for an eye control (technical equipment, combined with a tablet equipped with communication software) for a 7-year-old girl, suffering from Rett Syndrome (another genetic disease that causes symptoms similar to those of invdupdel8p), the Mother decided that it was no longer possible to accept such an answer and created the CAA Collective: My Voice, My Rights. This collective brings together hundreds of parents, professionals (speech therapists, occupational therapists, teachers, presidents of associations, etc.), as well as adult users of alternative and improved communication (AAC), and extends throughout Europe, North America and Africa.
La Maison 8p is a member of this collective and fully supports its actions! Since all the “invdupdel8p” children currently identified in France use some alternative and improved communication tool (AAC), we work together to raise awareness among the general public about the “voiceless” people, and we work to inform people in the multidisciplinary and pedagogical environment on how they can all best accompany such a person to move towards alternative linguistic autonomy. Join us on Facebook to exchange and discover how you can also become an actor to raise awareness and defend the rights of the “voiceless.”
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