Belgium, a fallback answer for French autistic kids | EUROtoday

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” NOT“We have the sensation of preventing towards a draft…” Ten months ago, Virginie and Kévin Marini chose to entrust their son Jules, 8 years old, suffering from glycogenosis, a serious genetic disease, and with a severe autistic disorder, to a specialized medico-social structure in Belgium. For this couple living in the town of Vienne (Isère), this choice is more like a last resort in the face of the “ignorance” of the public authorities. “For five years, Jules was left on the waiting list in around ten IMEs [​​institut médico-éducatif, NDLR], whether in Isère or in the Auvergne-Rhône-Alpes region. But each time, the answers were the same: either we were too far from the IME, or his multiple-disabled profile did not correspond to the structure, or there was no more space,” explains Virginie.

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So, as a final answer, final yr the couple utilized for an internship in a Belgian IME. “We found a place in six months. It's incredible. The separation was very painful, I developed a kind of chronic depression. We only see him during school holidays. But we had no other choice,” breathes little Jules’ mom.

1,250 French kids taken care of in Belgium

In 2023, 8,258 French individuals with disabilities, together with at least 1,250 kids, had been cared for in practically 230 Walloon medico-social institutions. Like Jules, “the majority of these children are on the autism spectrum,” underlines Nicolas Eglin, president of the National Federation of Associations Serving Students with Disabilities (FNASEPH).

As highlighted in a report from the National Disability Conference relationship from May 2019, “the lack of places in French structures, more especially for people with autism disorders, rare disabilities and more broadly for disabled people with cognitive and behavioral disorders”, does not allow the proper reception of these children and pushes parents to turn to Belgium. According to a report from the General Inspectorate of Social Affairs in December 2016, Belgium offers better responses “for people who do not find solutions in France adapted to their often serious disability, combining several pathologies and psychological disorders, or even physical after course interruptions”.

READ ALSO Autism: the anger of Gaëtan's mother and father, sufferer, in keeping with them, of mistreatment “We have always lacked offers to support these children. But it's getting worse and worse. Before, there was always hope of seeing establishments built. But today, for lack of alternatives, we see autistic adults remaining in EMIs for children, which is truly scandalous,” explains Sophie Biette, president of Adapei 44 (affiliation of fogeys and pals of individuals with psychological disabilities from Loire-Atlantique) and mom of an autistic daughter. The latter deeply regrets mother and father' recourse to the Belgian system as a consequence of lack of assets in France. “It’s a shame, but at the same time, you can benefit from quality support” in Belgium, exasperates Sophie Biette.

Estimated value of care in Belgium: 500 million euros

For eight years, the mother and father of Jules, who additionally suffers from a neurodegenerative muscular illness decreasing his mobility, did all the things to maintain their son near them. Kévin is a caregiver, their different son Logan additionally affected by the identical genetic illness as Jules. For her half, Virginie is on long-term sick go away, having been preventing most cancers for a number of years. For them, this help in Belgium is akin to an admission of failure of the French solidarity system. “We don’t understand why the public authorities are rejecting our son. He has rights like other children. We are told about inclusion, we are told about care for all, but in reality it is impossible. The State is not providing the necessary funding,” maintains Virginie. “In France, the cause of the disabled does not attract voters. They are not considered. The government has nice words about inclusion but that is not everything. While we are asking for new structures, the government prefers to save money on EMIs,” annoys Kévin.

To date, the monitoring of French autistic kids in Belgium is partly supported by the State. In whole, together with expatriate adults, the care of individuals with disabilities in Belgium prices greater than 500 million euros per yr, in keeping with the May 2019 report from the National Disability Conference. “Let’s stop financing Belgium and open places in France. It’s as stupid as logic,” says Sophie Biette. To forestall individuals with disabilities from leaving for Belgium or to carry them again to France, the federal government introduced in May 2023 the opening in the way forward for 1,000 locations devoted to kids, and specifically for these with extreme disabilities. autistic, with an allotted funds of 100 million euros. These 1,000 “solutions” ought to make it potential, in keeping with the Ministry for Disabled People, to supply “a significant response […] commensurate with the challenges.” In 2020, 90 million euros had been launched to attempt to put an finish to this exodus to Belgium, with the creation of two,500 locations for adults.

To cease this escape, Nicolas Eglin additionally recommends that France change the paradigm in supporting these autistic kids. “We have a purely medical French model, based on questions of places, by identifying children with pathologies. We must instead rely on courses of “inclusive solutions”, welcoming kids to high school, to center faculties, to excessive faculties. But our French mannequin is sadly not able to make these adjustments. We should enable medico-social and nationwide schooling stakeholders to welcome these kids. But we can’t ask academics at this time to have a particular intention for these kids. »

The doctrine of inclusion just isn’t unanimous

But this French doctrine of inclusion of autistic kids can’t adapt to all profiles. “The inclusive society is interesting as long as the adaptation strategies are not excessively burdensome. But today, for schools to be inclusive, there would need to be a real revolution in school organization. Putting five AESHs for a student is not always effective,” believes Sophie Biette. For Kévin and Virginie, it was merely not possible to think about Jules in a “classic” faculty surroundings: “It could even be dangerous for him, for the other students and for the teachers. It's impossible and, in any case, nothing is put in place. »

READ ALSO Autism: “Inclusion at all costs is a naive idea” Although the space from their son is troublesome to deal with, each mother and father are satisfied that it was one of the best various to the assorted refusals they skilled. “Jules evolved very quickly. He has progressed enormously. Now he can talk, he can count, he can even stand up! » rejoices Kevin. Both parents would now like to get closer to their son. “It’s my baby, it’s my life. It’s heartbreaking to leave him there, each time we have the impression of leaving our heart there,” concludes Virginie.