Coronavirus: in France, confinement also shakes up the care of young disabled people

Text by: Corinne Binesti

Since March 17 and the establishment of containment in France, the educational medical institutes are largely closed. Children and adolescents with disabilities, suffering from various intellectual disabilities, find themselves confined to their homes and monitored from a distance. Reportage.

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“  We no longer live in the same way since confinement. My son is not feeling well  ”, assures Julia the mother of a 14 year old adolescent suffering from pervasive mood disorders. Confined to her apartment in the Paris suburbs, Julia lives alone with her son. “  It's not always easy to calm your anxieties. Even if he is followed remotely by health professionals, he feels the need to move, to take a little turn because it calms him in normal times. There ? it's almost impossible  ”.

In France, since March 17, containment has led to the closure of the IMEs, the medico-educational institutes. These structures have the mission of welcoming children and adolescents with various disorders such as autism disorders, intellectual disabilities, behavioral disorders linked to poor emotional management or even genetic disorders. In this current context of compulsory confinement, these young people and their families find themselves in complex, new and sometimes even risky situations.

Health professionals specializing in the field of disability (specialized educators, psychologists, psychiatrists, psychometricians ...) must most of the time try to treat their patients from a distance and according to the means and equipment of families.

Socialization is penalized

Clémentine is a specialized educator and works in an IME located in Seine-Saint-Denis. She says her work with young people today is limited to making phone calls, about twice a week. “  We are responsible for maintaining a link but it is not obvious. Confinement can be frightening for some because it disrupts them emotionally. Many young people tell me that it is long and that they count the days  ”. If Clémentine and her colleagues nevertheless set up remote activities by creating in particular a blog on which the children send photos of their daily activities, the notion of "group", essential to the construction of these children, is more complicated: “  Usually, our medico-psychological team works in correlation and the children are never alone. In the current context, socialization and living together are no longer present  ”.

Sessions and activities that are done remotely

Conversations between caregivers and children also take place via computer screens or telephones. In Nice, psychiatrist Catherine Laffranchi, who works in an IME and a SESSAD (Special Education and Home Care Service), explains that health workers offer many activities to young people, often using video support. If this tool works rather well, says the specialist, she nevertheless recognizes that it is not the equivalent of a session: "  When we know that communication is 80% analog language and 20% oral language, it It is clear that during my remote interviews, I cannot so easily bounce off a sign, a mimicry that I could immediately detect if I saw the patient physically.  "

"I have not seen violence"

For families who are confined to several and housed closely in neighborhoods, managing a child's disability is actually more difficult. All the more so when the child's disorder leads him to overactivity. Catherine Laffranchi also specifies that confinement does not have the same consequences of discomfort for families who have settled in dignity and where the siblings are smaller. Anyway, in these two cases, she did not notice any particular violence: "  For the moment, I have not seen any. But that does not mean that there is none.  The psychiatrist believes that the important thing is first of all that the parents "  hold the road  " and that whatever their status.

Intra-family solidarity

Dalila, a mother who lives with her husband and three daughters, including a 13-year-old girl with Down's syndrome, has reorganized family life: “  Usually, Meriem likes going out. There, we have no choice and we must do otherwise. We follow the activity suggestions suggested by the educator via the WhatsApp network. We make pastries, coloring, photography ...  "This attentive mother also asks her daughters, without exception, to maintain their bedroom:"  A little cleaning every day in their space , she says. But we also laugh a lot all together. We play board games and my daughters get along well  . ”

For her part, Catherine Laffranchi notes the emergence of real intra-family solidarity in many homes since the beginning of confinement: "  I am pleasantly surprised to see many families find means of adaptation and mutual aid  " .

► Read also : Coronavirus : confinement and autism, a complicated situation for parents to manage

Containment sometimes soothes young people with autism

If health professionals agree that young people behave differently with regard to confinement depending on their disability, the isolation which for some proves to be a source of anxiety becomes for others a source of anxiety. appeasement. This is the case with many young autistic people: “  Confinement questions , analyzes the psychiatrist. For those with autism, I have noticed that excessive socialization often experienced in today's society, and particularly in school, can generate stress. However, in these children, I find that confinement makes them quieter or even more rested. But at the same time parents also tell me that this situation is making them stagnate  ”.

"Sami is in a comfort zone"

Marie is the mother of Sami, an autistic child aged 12 and a half: “  My son is in fifth grade and usually follows an education in a classical college with the support of an AVS (school life assistant). With school, he is under pressure all year round and this rhythm generates a lot of stress in him as in most autistic children who need more listening. So, right now Sami finds himself in a comfort zone and releases the pressure  . ” But Marie also recognizes that if health professionals remain in regular contact with her son, confinement constitutes a break with her classmates. This lack of socialization and interaction with others penalizes Sami: "  To evolve, Sami must also be confronted with the outside world otherwise he stagnates  " she specifies.

Marie and her son Sami. Personal family archive

For now, the deconfinement that must begin to take place on May 11 will not be without consequence. Many young people like Sami suffering from autism will certainly be revitalized but their new timetable will have a direct impact on their lives. These children who usually need a very planned and ritualized routine that reassures them, and from which they are no exception, will have to readjust.

► Also listen : Care for the elderly and disabled in confinement 

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