The many administrative tasks involved, the slowness of certain procedures, the documents to be provided to set up a file, or simply a lack of knowledge about your rights, can make medical and social procedures complex. On this page, we provide information about the assistance and services available to help you manage your neurofibromatosis on a day-to-day basis.
Aides et allocations
Education and schooling
Personalized Schooling Project (PPS) is a document that defines the child's schooling, setting out his or her needs in terms of adapted teaching materials, support and teaching arrangements to take account of his or her illness or disability. The applications must be made to the departmental disabled people’s centre (MDPH).
Based on the child's needs, the CDAPH (Commission for the Rights and Autonomy of Disabled Persons) will assess and propose adjustments to the child's schooling (quality and nature of support, particularly therapeutic or re-educational support, recourse to individual or shared human assistance, recourse to adapted teaching materials, etc.).
The implementation of this PPS will be guaranteed by a Schooling Monitoring Team organized by the Referent Teacher for the Schooling of Disabled Pupils, who will ensure the continuity and consistency of the implementation of the PPS by also providing a permanent link with the MDPH multidisciplinary team.
Individual Support Plan (PAI) is a written document specifying the adaptations to be made to the life of a child or teenager suffering from health problems in a group setting.
It is drawn up at the request of the family or the head of the school, with the family's agreement, in consultation with the school doctor, the mother and child protection (PMI) doctor, or the doctor and nurse of the host community.
When a pupil's state of health prevents him or her from attending school, the educational support at home, in hospital or at school (APADHE) scheme can be set up. This is a national education scheme implemented in each department under the authority of the Inspector of the Education Authority/Academic Director of National Education Services.
APADHE aims to ensure continuity of learning for pupils whose schooling is at risk of being interrupted for a minimum period of 2 consecutive weeks or 3 discontinuous weeks.
This support system generally takes the form of a SAPAD (Home educational support services), a departmental structure of the Ministry of Education which organizes the intervention of teachers.
APADHE is free of charge and pupils do not need to be recognized by the MDPH to benefit from it.
The family, the head of the school or any other person concerned with the pupil's schooling and health sends a request via an application form accompanied by the necessary medical information for the attention of the national education doctor.
If the opinion is favorable by the national education doctor or the school doctor, the coordinating teacher draws up an individualized project (subjects, timetables, pace, etc.), taking into account the pupil's state of health. National education teachers (the pupil's own teacher, volunteer teachers from the pupil's school or teachers specially assigned to these tasks) then intervene at home or within the care structure.
Accompagnement Pédagogique À Domicile à l’Hôpital ou à l’École (APADHE)
En quoi consiste l’accompagnement pédagogique à domicile à l’hôpital ou à l’école ?
Enfant handicapé scolarisé : peut-il avoir des soins et un soutien scolaire ?
Étudiants en situation de handicap
Guide pour la scolarisation des élèves en situation de handicap
L’école pour tous
Ministère de l’éducation nationale
Tous à l’école
Employment and disability
In France, all private companies and public services with more than 20 employees are required to employ at least 6% disabled workers. If they fail to do so, companies must pay compensation to AGEFIPH (Association pour la Gestion du Fonds pour l'InsertionProfessionnelle des PersonnesHandicapées).
To help employees access employment despite their illness, a number of aids and arrangements can be put in place.
The MDPH can be asked to obtain an RQTH (Recognition of the Status of Disabled Worker) so that employees who are disabled due to their illness can benefit from advantages both in finding and keeping a job.
The status of disabled worker is recognized by the CDAPH (Commission for the Rights and Autonomy of Disabled Persons) and entitles the disabled person to special measures to help them find employment (rehabilitation and re-education courses, apprenticeship contracts, etc.), or compulsory employment with companies, to access to the civil service, either by means of a special competitive examination or by special contractual recruitment, but also to special arrangements for working hours and workstations, as well as specialized support for job-seeking, especially within the Cap Emploi network.
The network Cap Emploi provides a local public service and is at the service of all disabled people and all employers in matching jobs, skills and disabilities. The network carries out actions to welcome, inform and support disabled people in their professional orientation and integration, but also to help companies wishing to recruit disabled people.
AGEFIPH mission is to promote the professional integration and continued employment of disabled people in private companies and in the ordinary working environment.
To fulfil this mission, AGEFIPH:
- Collects and manages contributions from private companies subject to the 6% employment obligation.
- Establishes and leads partnerships with national and local public bodies (regional councils, Pôleemploi, etc.) to amplify public policies in favour of people with disabilities.
- Offers advice, support and financial assistance to disabled people and companies.
The Protected Work Environment (MPT) concerns disabled people who are unable to work in an ordinary environment. In this case, ESAT (Establishments and services providing assistance through work) enable them to carry out a professional activity adapted to their abilities. The CDAPH (Commission for the Rights and Autonomy of Disabled People) of the MDPH decides whether a person should be referred to a sheltered workplace.
ESAT are establishments in the medico-social sector that offer people with disabilities a variety of work-related activities, as well as medico-social and educational support, in order to promote their personal and social development.
Employment and disability: Adapted Enterprises (AE)
Handicap : travail en Établissement et Service d’Aide par le Travail (ESAT)
The occupational health service can help you adjust your workstation or prepare for a return to work following long-term sick leave.
The occupational health doctor leads occupational health initiatives to protect the physical and mental health of workers throughout their career. Where the worker's state of health so warrants, the occupational physician may propose to the employer individual measures to adjust, adapt or transform the workstation, or measures to adjust working hours.
It is therefore the medical reference for the workplace for workers whose state of health requires accommodation.
Departmental Centers for the Disabled (MDPH)
The "MDPH file" is a form used to apply for benefits (financial or human assistance) in connection with difficulties encountered in daily life due to illness, or to obtain entitlement to educational (ULIS), vocational (RQTH) or medico-social guidance.
The MDPH application must include the following documents:
- Cerfa form n° 15692*01
- Medical certificate Cerfa N°15695*01 (less than 6 months old).
- Valid proof of identity.
- Proof of address (less than 3 months old) prior to submitting the application. .
In addition, a supplementary document to the MDPH file is currently being tested, to make it easier to understand the limitation of abilities caused by the rare dermatological disease.
The part "Life project" section is used to explain the difficulties encountered on a daily basis and the changes in the autonomy of the person concerned as a result of their disease, as well as the concrete needs for financial, material or human assistance.
The application should be sent via mail to the MDPH in the person's department of residence.
On receipt of the application, a multi-disciplinary team assesses the person's disability and, if necessary, their permanent incapacity, identifies their needs and draws up a Personalized Disability Compensation Plan (PPC) that takes account of the wishes expressed by the person (or their legal representative) in their life project.
This plan contains proposals for measures designed to meet the various needs identified. These may involve the establishment of rights (AAH, AEEH, PCH, CMI, etc.) or recommendations for responses that do not fall within the remit of the CDAPH.
After the multi-disciplinary team has studied the situation, the CDAPH (Commission for the Rights and Autonomy of Disabled People) will notify the decisions, opinions or recommendations relating to all the rights of the disabled person.
Online resources
The December 2021 edition of the Orphanet Cahier "Living with a rare disease in France - Help and services for people with rare diseases and their families" is now online!
Integrascol is a website aimed at teachers, doctors and health professionals who work with sick or disabled children.
Its aim is to raise awareness among those involved in the schooling of sick or disabled children and to help them make the necessary adaptations. AP-HP is a partner in the project.
At the initiative of the health network for rare diseases an animated online infographic entitled Rare diseases: a course for everyone has been set up to provide information on the help and facilities available to help people manage their health and life as best they can. This new tool, organized around 10 major themes relating to the patient's health and life pathway, provides clear information and access to useful resources to help deal with the issues raised by rare diseases.
My disability pathway provides official information and support for people with disabilities in their day-to-day lives.
Since October 2022, a state-qualified social worker is officially available remotely for patients and families of patients in the FIMARAD Rare Dermatological Diseases Healthcare Network. Anonymous, free of charge and confidential, this service enables the social worker to help you with all the formalities associated with your rare disease. Bound by professional secrecy*, the social worker will support you in accordance with the code of ethics governing her profession.*, l’AS vous accompagne dans le respect du code déontologique encadrant sa profession.
Who should you contact?
Delphine CURIS - State-qualified social worker (2004)
Office hours (remote):
- From 09:00 to 17:00, Monday to Friday.
- By telephone and/or e-mail.
- Tel.: +33 (5) 36 09 19 30 or ++33 (6) 38 48 61 85.
- E-mail: delphine.curis@alliance-sociale.fr
For more information, visit fimarad.org