The difficulties begin as early as preschool, with the complex process of applying through the Maison Départementale pour les Personnes Handicapées (MDPH) or Departmental House for Disabled Persons, a government organization in each region of France that provides information, administrative and financial support for people with disabilities and their families. The application process is highly demanding: families must meet with the educational team, gather input from all professionals working with the child, apply for placement in a mainstream school, and request support from an Accompagnant d'Élève en Situation de Handicap (AESH)  or Special Needs Teaching Assistant.

MDPH decisions are often delayed due to the high volume of applications. Even when support is granted, the school must then recruit an AESH to provide the necessary assistance for the number of hours allocated by the MDPH. It is not uncommon for these aides to be hired mid-year or on a part-time basis, which significantly limits children’s school attendance. As a result of this, some children are only able to attend school in the mornings and are rarely accommodated during lunchtime to avoid reducing their academic hours. Some schools even refuse to admit children with Down syndrome due to a lack of AESH staff.

Additionally, the MDPH file must be regularly renewed, especially when a child changes grade levels or when parents request that their child repeats a grade if he/she is not ready to advance.

Few teenagers with Down syndrome continue to high school, as they are more often pursue vocational training programs instead. In middle school, they may be placed in ULIS (Localised Educational Inclusion Units) classes if parents apply through the MDPH. These special classes allow students to remain in mainstream education. However, these units are not available everywhere, and it is often recommended that children with Down syndrome be placed in Institut Médico-Éducatif (IME), institutions, specialized in welcoming children and teenagers with intellectual disabilities.

Many parents are hesitant about IMEs, fearing that their child will be held back by being surrounded solely by other children with disabilities. I had similar concerns, but I can now testify to the benefits: since my son has been in an IME, he has made significant progress in speech and independence. He has formed friendships with peers who face similar challenges, and he feels comfortable in an environment where social interactions are simplified.

Children learn things from each other and help each other grow, some excel in sports or the arts, others are skilled with their hands, and some have strong logical abilities. Just as with a standard curriculum, we must adapt to each child's strengths and aspirations, this is known as self-determination. Forcing a child into mainstream education at all costs can come with significant drawbacks and create real difficulties. Placing a child in an IME is not a punishment or a failure, it is about giving them the best chance to succeed. These institutes can also serve as a bridge to later transition back to mainstream schooling.

This is a complex, fundamental issue. For these children and in fact for all children, I believe we need to rethink how learning is approached and delivered. By integrating adaptive teaching methods from the medical-social sector into mainstream education, we could improve learning outcomes for everyone.

Currently, we are layering solutions, hiring AESH staff, creating ULIS classes, and externalizing IME classes into local schools, to compensate for the fact that our education system is primarily designed for those who succeed, rather than for those who struggle.We should shift toward a support-based system rather than a purely medical approach to help these children become independent adults who can work, vote, and contribute to society.

Belgium is often cited as an example, as all children are included in mainstream schools. Teachers receive training and are accustomed to working with students with intellectual or motor disabilities and neurodevelopmental disorders. Nordic countries are also renowned for having highly inclusive and adaptable education systems, accommodating all students.

This pilot academic support program draws inspiration from a class that effectively used this approach for years. It serves as a band-aid solution for children with Down syndrome who are only partially or not at all enrolled in school while awaiting placement.

For these children, everything takes longer: information reaches them in a fragmented way, making it difficult for them to process. Learning is a slow, continuous process because they tend to forget and regress quickly if their education is interrupted. For example, it might take them 15 years to learn to read, but they can learn to read! The project aims to provide continuity in learning by offering supplemental academic support, helping children retain their knowledge despite gaps in formal schooling.

Our Respire! community center is set to open in January 2026 in Lyon’s 9th district. It will provide families with respite, opportunities to connect, and valuable resources, including academic support activities for children. In 2026, 8 children will receive academic support, expanding to 16 by 2027. Our volunteers will be guided by a teacher specializing in cognitive disabilities and Down syndrome. We are also exploring partnerships with speech therapy schools. The goal of Respire! is twofold: to provide children with the academic support they need and to relieve parents of the burden of tutoring, entrusting it to a dedicated structure. By easing their mental load, we hope to make them feel more supported and less alone.