(Joliette) “Take me to the hospital and unplug me. »
Lucie Bellerose says it bluntly. If she has to leave the L’Arche Lanaudière home where she has lived for 20 years, the 62-year-old woman does not want to end her life in a CHSLD.
She prefers to die. Because L’Arche is “his house”.
Like the ten other adults with intellectual disabilities who live in this home, returning to his family is not an option. Some simply don’t have it anymore. Others have parents who are now too old to care for them.
Lucie generally has an “exceptional joie de vivre,” assures the director of L’Arche Lanaudière, Frances Bourgouin-Brunelle.
When we visited the Joliette home at the beginning of January, we quickly noticed: Lucie is a cheerful sixty-year-old who distributes hugs and multiplies the bursts of laughter. She offered representatives of The Press a warm welcome by offering them “good coffee” and Phentex slippers.
PHOTO OLIVIER JEAN, THE PRESS
Lucie Bellerose, resident of L’Arche Lanaudière
But when this woman who lives with an intellectual disability met with her MLA recently to implore him to save her “house,” she started to cry.
Then she said this terrible sentence which gives an idea of the despair into which residents and their families are plunged these days.
Due to a lack of sufficient funding from the State, the survival of the 24 homes of the Association des Arches du Québec – present in 8 regions of the province – is threatened, according to the director of L’Arche Canada, Louis Pilotte. In total, 135 adults with intellectual disabilities are at risk of being forced to move.
The two homes in Lanaudière, including the one where Lucie lives, are struggling with the most precarious financial situation. They risk closing first; by December.
At the heart of the problem: public funding per place. It is equivalent to $85 per day for accommodation and meals for L’Arche homes in Quebec. This is well below average, especially when compared to the allocation granted to new projects intended for this type of clientele (intellectually disabled) or at least similar (autistic adults without serious behavioral problems), explains Valérie Roy , responsible for development at the Association des Arches du Québec.
PHOTO OLIVIER JEAN, THE PRESS
Public funding per place is at the heart of the problem: $85 per day for accommodation and meals is well below average, estimates Valérie Roy, responsible for development at the Association des Arches du Québec.
Mme Roy gives the example of the Véro & Louis houses, whose public funding is significantly higher ($291 per day per adult housed) for a clientele which, a priori, presents the same issues.
“Would we like a speedboat? [pour être mieux financés] ? », asks the one who was political attaché to the former PQ MP Véronique Hivon, discouraged.
The director of L’Arche Canada, Louis Pilotte, asks himself the same question: “To obtain funding in Quebec, is it better to do show business instead of social work? »
Better funded elsewhere in Canada
The international organization – present in 38 countries – is also much better financed in other Canadian provinces where its homes receive an amount three to four times higher per person housed than in Quebec, he notes.
“The problem” is not what the Véro & Louis Foundation receives, indicates the director of L’Arche Canada. “That’s what it costs,” he said. This is because this same amount is not granted to all community resources that offer long-term accommodation to similar clienteles, insists Mr. Pilotte.
L’Arche complains of not receiving a “coherent” response from the Quebec Ministry of Health and Social Services. “The Ministry refers us to the CISSS/CIUSSS and the CISSS/CIUSSS refers us to the Ministry,” laments its director, Mr. Pilotte.
If the Arches were better funded, they could even “expand” spaces since they currently have dozens of rooms available, left empty due to lack of money to hire additional staff.
As people housed at L’Arche age, their needs increase, requiring more employees. For example, due to an accelerated deficit of $10,000 per month caused by the hiring of four “day assistants”, L’Arche Lanaudière’s reserves will be exhausted in December. In addition to the ten people accommodated, around thirty others who attend the day center will be affected.
Moreover, in alternative homes – designed on the model of seniors’ homes, but for clients with a physical disability, an intellectual disability or an autism spectrum disorder – a place “costs” five times more. to the State than a place in a L’Arche home, insists Valérie Roy, of the Association des Arches du Québec.
An emergency fund called for
To avoid closure, L’Arche Lanaudière is asking the local CISSS for an emergency fund, in addition to ensuring an agreement that meets its needs. The organization is also calling on the Minister responsible for Social Services, Lionel Carmant.
The Ministry of Health and Social Services says it is “aware that the needs of adult clients with intellectual disabilities are important, and of the valuable support provided to them by community organizations in the different communities of Quebec, such as the network of the Arches.”
Asked about the consequences of such a closure on disabled adults and their families, the CISSS de Lanaudière indicates by email that “discussions have already taken place and others are expected soon”, without further details.
Johanne Forest doesn’t dare imagine what will happen to her 42-year-old daughter, Patricia, if L’Arche closes. “She is far too young to end up in a CHSLD and I don’t have the energy to take her back,” said the mother, very worried. I’m past the age of taking him sliding and snowshoeing. »
PHOTO OLIVIER JEAN, THE PRESS
Johanne Forest is worried about her daughter Patricia: “Don’t take away from them the place where they are happy and fulfilled,” she implores.
Here, her daughter “does not spend her days rocking in front of the TV,” she emphasizes. Patricia does all kinds of stimulating activities, including dance therapy with a teacher from the Grands Ballets Canadiens. She also participates in workshops with inmates from Joliette prison. “We talk about our emotions,” Patricia explains to us. They [les détenues] live tragedies. »
“Assistants” also accompany Patricia and the other residents of the resource on “work platforms” at the local CEGEP and in a food bank, among others, where they carry out simple tasks that give them value.
“Don’t take away from them this place where they are happy and fulfilled,” implores Mme Forest.
Inequity of funding from one CISSS to another
The Association des Arches du Québec is calling for a “standardized” funding program for all community organizations that offer long-term accommodation. Currently, the 8 L’Arche communities (24 homes in total) present in as many regions (and therefore as many CISSSs) do not receive the same funding from one region to another (hence the average of $85 per person, per day). The CISSS de Lanaudière finances the two homes in the region to the tune of $40 per person, per day. “The day we close, users return to the health network; a network where there is no place for them; this same network which is forced to buy places from the private sector because there is so much shortage of them,” says Valérie Roy, of the Association des Arches du Québec, while the State has been insisting for years in its action plans on importance of partnership with this same community environment.
Sex scandal involving his co-founder
L’Arche co-founder Jean Vanier subjected several women to sexual violence during his decades with the charity, including in Canada, France and India, according to a report published in January 2023. An investigation commissioned by the organization identified 25 women who experienced, at one point in their relationship with him, “a situation involving a sexual act or an intimate gesture” in a context of “control”, “abuse of authority” and “more generally” of “confusion of the spiritual, emotional and sexual spheres”. The attacks occurred between 1952 and his death in 2019. Could the scandal have harmed the public funding of L’Arche? Although the report did not find evidence that Jean Vanier abused people with intellectual disabilities, the international organization and the Canadian branch have taken steps to improve denunciation and reporting procedures, assures the director of L ‘Arche Canada, Louis Pilotte, who specifies that his difficulties in obtaining adequate public funding in Quebec date back well before the scandal.