“It’s as if Covid had lasted three years.
» Sandrine Chauvin was waiting for the end of the health crisis to allow Clément, her multi-handicapped son, to return to a good level of care.
“But it’s worse,” says the mother living in Falaise (Calvados) who has become “a caregiver 24 hours a day, seven days a week”, with the feeling of “being placed under house arrest”.
Clément suffers from an extremely rare genetic disease, combining neuropathy and encephalopathy.
Some 200 cases recorded worldwide and only two for this specific form.
During Covid, the teenager's care was interrupted.
According to the family, it has completely stopped today.
“We just have a visit from a physiotherapist, which has become regular.
It’s our only support, confides the mother.
In an emergency, she came to provide sessions, but without being equipped with the appropriate equipment.
A makeshift solution after several ruptures with the other actors in Clément's follow-up.
A “health scandal” denounce parents.
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The physical medicine rehabilitation service, “which offered a little respite”, ended support at the end of 2021. In June 2022, the physiotherapist, “Clément’s pillar for seven years”, also stopped seeing the boy.
The professional would have reported missed appointments by the family, who mentioned justified absences.
The latest twist to date, at the beginning of January, the Chauvins received a letter informing them that their son had been removed from the medical-educational support system (DAME, formerly IME) in Falaise.
The establishment had hosted Clément a few half-days per week for several years.
Dismissed from his medical-educational establishment
How can we explain such an outcome, which parents perceive as abandonment?
Franck and Sandrine Chauvin go back to mid-November and a treatment incident after severe pain felt by Clément, shortly after an operation.
“There were errors, a protocol not respected,” explains Sandrine.
We spoke with the establishment and it went well.
»
The DAME management has a different perception.
She reports a difficult home visit from a caregiver to Clément.
“Our employee had a bad experience with this visit, receiving numerous comments about the work of the establishment.
She was on sick leave for several days, which was recognized as a work accident,” indicates Laurent Boulanger, the director.
The latter made a new follow-up proposal to the family, which was refused, which led to removal.
The parents of the young disabled person are strongly opposed to this decision and denounce “excuses for not taking care of Clément”.
They see “a gap between words and actions” in supporting people with disabilities: “We are campaigning for fairness of care regardless of the degree of disability.
There is a lack of means and will.
Lack of coordination too.
It is not normal for a child’s survival to depend on parents and associations.”
While the family is considering taking legal action, contact still exists with the Regional Health Agency (ARS).
The institution recognizes “that reinforcement of the (support) offer is necessary in particular with regard to the difficulty of access to these structures or the complexity of the routes, some of which may even be subject to ruptures” .
The Chauvin family hopes to meet ARS officials to restart Clément's follow-up and also obtain a little respite from their daily lives.