“Frédéric and I are still doing well. But he is 51, I am 76, and one day there will be an end to our story”, observes Françoise Grandvalet, whose son suffered the heavy consequences of anesthesia accident at the age of five. “When will I be gone? I don’t know. At the moment, there are very few places for him,” adds the septuagenarian.
“He is part of this generation of children who could not even go to school. And today that they are getting older, they will still be sacrificed because no one has planned for their future”, she notes.
With the increase in life expectancy, “more and more people with disabilities are reaching 60 or 70 years old, and that’s good,” explains Luc Gateau, president of Unapei, one of the main associations families in the area of intellectual or cognitive disability.
But there is a “serious” lack of places in establishments to take care of them, which generates a lot of concern for parents, underlines this official.
– “When you’re gone” –
Over the past twenty years, the public authorities have certainly begun to create specialized structures for aging disabled adults, sometimes in the form of dedicated sections in retirement homes.
But supply remains far below demand, explains sociologist Muriel Delporte, who wrote her thesis on the retirement of disabled workers. So many people concerned are forced to leave, from the sixties, in an Ehpad, where the care is not adapted to their profile.
The problem will be even more acute in a few years, because “the effects of aging will combine with those of disability”, notes Ms. Delporte, who recommends “anticipate needs”, to avoid having to seek an emergency solution. at the time of the parents’ death.
In Vendée, the Handi-Espoir association has been welcoming disabled people and their elderly parents in the same establishment for 15 years, who can end their lives there.
This unique experience in France is the subject of a documentary broadcast Wednesday evening on Arte (and already available on the channel’s platform): in “My child after me”, director Martin Blanchard films daily life in this home where older residents say they are more confident about the future.
“We say to families: when you are no longer there, we will be there”, summarizes Emmanuel Bonneau, the general manager of Handi-Espoir, with AFP.
– Brothers and sisters –
The film notably follows the arrival at the “Boistissandeau” of Annie Obled, 76, and her daughter, who has Down’s syndrome. At 35, Marie-Madeleine is still young and could in theory live in a classic “home of life”, explains to AFP Ms. Obled.
But the 30-year-old is very reluctant to live in a community because of an assault experienced in 2016. She therefore stayed for a very long time with her mother, who was “very tired, physically and morally” and who now says she is “enchanted” to now be able to “breathe”.
For many families, however, the search for a lasting solution continues. And it sometimes falls to the brothers and sisters, forced to take over after the death of the parents.
Like Maryse, 65, who has four brothers and sisters. The youngest, Jean-Luc, 63, mentally retarded, currently lives in a “foster home”. He will lose his place there when he stops working in an ESAT.
Maryse asked for a place for him in an establishment more suited to his age, but “there are 77 people on the waiting list”, she laments. This situation “is starting to weigh on us: what will become of it? We would not want it to be our children then to take care of their uncle”.