Story by Morgen Lily Neuhauser

When the European Commission sanctioned France last year for inadequate efforts to make education and daily life accessible for those with disabilities, many families were not surprised. For years, parents of children with disabilities have complained about the lack of educational facilities and resources.

Serge Guerrini, a father of a boy with a developmental disability, said that things were so bad in France many families took advantage of an agreement between Belgium and France that allowed them to immigrate to Belgium because it has more services for people with disabilities. The future of the agreement is unclear. Due to overuse, Belgium has begun letting fewer families immigrate there, Guerrini said, leaving many to navigate the French special education system. 

Guerrini said that the problems in France primarily arise due to a lack of political will to make change and a lack of funding. 

“On the political level, at the national level, there are always promises,” Guerrini said. “But, in fact, the funds are not released and nothing changes. So there are no new spots created to this day.” 

Nineteen years after the passage of landmark legislation on equal rights and opportunities for people with disabilities in France, the country is in the midst of significant change in special education. The 2005 law ensures that every child with a disability has the right to be educated in a mainstream environment at their local school. The legislation was bolstered by a 2013 law introducing the concept of inclusive schools into the education code. 

Since the passage of these laws, support services have increased. According to the publication French Republic, the percentage of students with disabilities who benefited from human support in their school rose from 26% to 47% between 2006 and 2011. 

Nowadays, more and more families are asking for their children to attend mainstream schools because there are limited spots available in specialized institutions. According to the Ministry of National Education and Youth, 460,000 students with disabilities are enrolled in mainstream schools in France, which is four times more than 15 years ago. Another 11,000 children with disabilities are waiting for a place in a medical-educational institution that would best suit their needs. 

The increased number of special education students puts a lot of stress on the school system, said Sophie Poulain, a volunteer at Dyspraxia France Dys 13. The rigorous school system leaves many teachers unsure of how to handle students with special needs. 

“The school system has a certain number of boxes that have to be ticked,” Poulain said. “So a child has to be able to do such and such. And if that child simply cannot reach those goals, then the teacher finds that they just don’t know what to do.”

Dyspraxia France Dys helps form bonds among families who have children diagnosed with dyspraxia and dyslexia, said Poulain, whose daughter has dyspraxia and other conditions. The association takes its name from dyspraxia, a developmental coordination disorder, and dys, the Latin root for illness or difficulty. 

“As a parent, when we discover that our child has some form of disability or developmental difficulty, we feel very alone,” said Poulain, whose daughter is now 21. “And so it is very important to have those connections and to feel less alone.” 

Poulain also runs a parent cafe in Pont De Crau, outside of Arles, for people whose families have someone with dyslexia, dyspraxia or related conditions. Every few months, support groups meet to provide comfort and community to caregivers and other loved ones, Poulain said.

Poulain knows how lonely being a parent of a child with a disability can be, so she wants to ease that stress for others. 

“What we are doing, creating connections with other parents, that sort of thing just didn’t exist at all when my daughter was young,” Poulain said.

Poulain noticed that her daughter was not following a neurotypical path of development. By the time she was 4, her daughter still wasn’t speaking and Poulain was unsure if she truly understood what was being said to her. 

Eventually, her daughter was diagnosed with dyspraxia, severe dyslexia, ADHD and a developmental coordination disorder. As her daughter grew older, Poulain took on most of the responsibilities of caring for her. Medical appointments, filling out documents and advocating for her daughter took up so much time that Poulain had to drop down to part-time at work.  

Dyspraxia France Dys now helps by connecting families with the appropriate support services. In France there are two different tracks of special education classes within mainstream schools. Students are either placed in Sections d’enseignement général et professionnel adapté (SEGPA) or Unités localisées pour l’inclusion scolaire (Ulis) classes. SEGPA is a year-round, full-time special education program that prioritizes getting students ready for the workforce. Ulis aids students who are struggling in specific subjects. Students can be taken out for individual classes, but attend mainstream classes the rest of the time. 

“The two services are very good, but you do have to be aware that if you go into the SEGPA class, you’re gonna get more limited in terms of choice,” Poulain said. 

Poulain routinely goes to school meetings with families, helps them fill out the documents that are necessary to get their disability recognized, and connects them with the appropriate doctors. 

Other families have similar stories of an overwhelming and overly complicated system. Guerrini and his family have been navigating the special education system since their son, Silvio, was 5. Silvio was diagnosed with regression in communication with an autistic history and started receiving services in Arles around 2008. Silvio started at the public school of Gageron with an auxiliaire de vie sociale, an aide who would attend classes with him for about two or three half-days per week. Guerrini said that getting assigned an aide in Arles is very difficult and the family was able to arrange one through a local politician they knew. 

Eventually, Silvio was enrolled in “L’Oranger,” a facility in The Arles Hospital. He attended about three half-days per week. Silvio’s time at “L’Oranger” was spent with a supportive child psychologist in an environment that “welcomed children with difficulties and tried to motivate them,” Guerrini said. 

Guerrini notes that the special education system in France involves national, regional and local agencies, and poor communication among the entities makes it difficult for families to know their path. The main problems, according to Guerrini, are the need for more spots and budget allocated for needed services.

“It’s the obstacle course, so as we say, you have to hold on and not let go, keep going, and believe,”  Guerrini said. 

Guerrini advises parents in similar situations to be patient, have courage and believe in the process.

In addition to the poor coordination between government entities, parents complain about the lack of training for educators. Many teachers and aides are not equipped to handle these students as they don’t get adequate training, Poulain said. 

“If you’ve got a teacher for your child who really wants to do the best they can for them, then it can go well,” Poulain said. “But, of course, if the type of disability of the child is such that it’s very, very complicated for them to be in a group with other children, then they need more help.” 

Poulain hopes that Dyspraxia France Dys can be part of the solution one day, helping to train educators in the community. 

“Dyspraxia France Dys needs to be able to go into schools and explain to teachers the tools that can be used to help children with learning disabilities,” Poulain said. “Those tools are going to help all the children in the class.” 

Dr. Christian Pic specializes in autism and neurodevelopmental disorders. In his practice, he routinely communicates with schools and daycare centers, visiting various locations and showing staff how they could adjust the space to best suit the needs of students with autism. Pic said that accessibility is a political issue, and as a society, France must work to integrate accessibility into daily life. 

“It’s not the disabled child who should adapt to us,” he said, “but us who should adapt to them.”

Anna Cauvin and Monica Ronco served as interpreters for this story.