It’s a daily ritual. Lucie, 13, sits on her father’s lap and shares a moment of complicity with him. She squeals with delight. It is 5 p.m. this Wednesday, the young girl with multiple disabilities has just returned from the IME of Grand-Champ (56), where she is cared for during the day. The taxi has just dropped her off in front of her house in Vannes. Yves, her father, pulled her out of her heavy wheelchair. He transports her through the living room with his small stool on wheels. Another trick among all the tricks the family had to devise to lose a small piece of chromosome since the discovery of Lucie’s disability. “Being the parent of a disabled child requires a high level of competence in many areas,” sums up Laure Le Meitour, the mother.
“We need understanding employers”
The evening program leaves little room for improvisation. Pauline Le Bailly, domestic help, comes in turn. “It’s a pleasure to come to Lucie’s,” she admits. “Thanks to the domestic help, I was able to continue working,” says Laure?. Maintaining a job is a challenge for these parents. “You need understanding employers,” say Yves and Laure. He is retired. She, a psychomotor sufferer, organized her schedules as liberals. Valérie Pécresse, the LR candidate, wants “to give foster families who care for disabled children a real place in the adjustment of their professional life”.
Being the parents of a disabled child requires a high level of competence in many areas.
Pauline first takes care of Lucie’s shower. Set up the downstairs bedroom and bathroom set up in a part of the house added in 2018 so you don’t have to bring the young girl upstairs anymore. A significant investment, just like the truck that allows the wheelchair to be loaded, the verticalizer that allows Lucie to stand up, the wheelchairs, the toilet seat. For most of these investments, the family has managed to benefit from funding: from health insurance companies, mutual insurance companies, the ministry. Because that’s not always enough, the family has created two associations, The open drawer and My butterfly hands. “Finances, administrative burdens, that takes a lot of time,” the parents shout. “And again we are part of associations, we dare to speak, put Laure and Yves Le Meitour into perspective. But what do disadvantaged families who do not have access to all the information that live in a confined space do? »
Inclusion, a struggle for families
The fights are numerous. Inclusion is part of it. A topic brutally taken up by Éric Zemmour last January: “We need specialized bodies to take care of it. Except people who are obviously slightly disabled can enter the class. » Laure believes that « the character does not accept the difference and expresses himself without really knowing the subject ». Lucie lived a year of inclusion at school, in the big section, a failure. “The AESH (accompanying student with disabilities, editor’s note) needs to be trained and upgraded, says Laure. The more severe the disability, the more AESH and teachers need to be equipped. This is what Anne Hidalgo and Jean Lassalle suggest. Emmanuel Macron promises 35-hour contracts. Lucie’s mother is delighted that her daughter’s IME is working on reverse inclusion: bringing disabled children into the facility.
“EMIs struggle for recruitment”
At 6pm, Lucie will sit down to eat, still supported by Pauline. Madenn, his 9-year-old little sister, the accomplice, returns from her circus session. Laure wants her eldest to benefit from “nice” activities too. But physiotherapy or orthoptic sessions leave little room in a busy schedule. “Care is being provided at home because the IMEs are struggling to recruit healthcare professionals,” says Lucie’s mother. She regrets that these facilities are often located far from the cities: “The children travel miles and it is difficult to find staff.” For all of this, with the help of Madenn, the family went through the programs of the presidential candidates. Of course they will vote. “But not only if you look at the handicap suggestions, there is not only that in life! »