A Stations of the Cross for DI-ASD users and their families

Nearly 40,000 people live with an intellectual disability and/or an autism spectrum disorder in Quebec. Many of them will be called upon at one time or another in their lives to have to apply for accommodation. Since 2019, these requests have doubled or even tripled in certain regions of Quebec. The lack of available living environments, the explosion in the number of emergency situations as well as the increase in the number of cases lead to placements that are far from ideal, according to the forty testimonies collected by The duty.

Line Dupéré is one of the 29 families who have chosen to share their obstacle course through the Quebec accommodation resource pool. Sitting in his armchair, Steven casts tender glances at his mother, who came to feed him during his dinner break. Over the next few weeks, he will be moved to his new “home” for the fourth time in less than ten years.

Steven has Angelman Syndrome. “He is in diapers, does not eat alone. He doesn’t sleep well at night. It’s 24 hours a day. He’s in a wheelchair, otherwise he crawls around. He doesn’t speak at all,” his mother explains.

Out of breath, Line must resolve to place Steven at his 18th birthday. After seven years in an initially unstimulating resource that closed its doors for lack of funding, Steven was sent to a private long-term care center (CHSLD) in Saint-Lambert, where a pilot project was launched for a twenty ID-ASD users.

“The very first night, Steven was physically assaulted by an employee of the residence”, says Mr.me From father. “Steven is like a little baby of a year and a half, but he is 28 years old and he is strong. I filed a complaint with the police, her bruise was huge. The gentleman pleaded guilty to assault. He no longer has the right to work with vulnerable people, ”says Line.

A few months later, the CHSLD decided to close the floor when an investigation was launched by the Department of Disability Programs of the CISSS de la Montérégie following numerous complaints.

Steven and all the other users are then relocated to another private CHSLD belonging to the same owner located in Longueuil.

“The educator arranged for me to have a nice big room for Steven. He needs to move. I have everything set up. We did everything to ensure that he had something beautiful, and Steven had an attendant for him at all times paid by the CISSS to take care of him,” she rejoices. But Line’s happiness will be short-lived, as complaints pile up on the Complaints Commissioner’s desk once again.

A report obtained by The duty refers to « 21 intervention and complaint files over the past two years, including 8 since last March, concerning the care and services offered to users with an ID-ASD », and even mentions « mistreatment organisational” experienced by users.

By mutual agreement with the establishment, the residence manager terminated his contract because of « his inability to find competent staff to provide the care required with the level of complexity of the service offer » for the 29 DI-TSA users on the floor.

After months of uncertainty, Line accepts that Steven be transferred to the Maison des jeunes de Beauharnois, even if it means that she will have to drive almost an hour and a half to see her son every week. “He will be with young people of his age and the place is brand new,” she rejoices, while fearing to experience another disappointment.

« A placement that is not ideal, but functional »

Like other regions in Quebec, the Montérégie is affected by a real housing crisis for children and adults with ID-ASD in its territory. Currently, no places are available, which has forced the opening of five “overflow” resources.

“We have to get out of the emergency situation. I have been a manager in the network for 15 years and I was a clinician for 15 years. We have never seen all of Quebec’s resource parks under so much pressure, » says Annie Couture, assistant director of programs for intellectual disabilities, autism spectrum disorders and physical disabilities at the CISSS de Western Montérégie.

The social impacts of the pandemic on users and their families have also exacerbated the situation.

Added to this is the low turnover rate in accommodation: if, in a CHSLD, the average length of stay for an elderly person is 18 to 24 months, that of an ID-ASD user is 40 years old.

The pairing/pairing teams of Mme Couture, responsible for finding the best resource adapted to the profile of each user, are struggling to do their job. Not only are accommodation requests arriving urgently, but the cases are also increasingly complex.

« Our teams tell us: ‘We may make the best pairings, if there are no places available, what do we do?’ In the meantime, we will have to find an alternative, a place that will not respond completely, but which, with preventive arrangements, will make it possible to be safe and of good quality. This is what we experience every day and it is unanimous at the provincial level, this reality of lack of places of all types, ”notes Mme Sewing.

Emergency accommodation

Due to a lack of places, some users also find themselves accommodated in the hospital. “These are IRs [ressources intermédiaires], RTFs, families also sometimes, who, for all sorts of reasons, out of breath, will take the person to the emergency room, ”explains Annie Couture. “Before the pandemic, this kind of situation, I encountered one a month. There, it’s one a day! Currently, I have a user who has been in the hospital for nine months. It should be taken out, ”she laments.

Valérie Coombs owns two IRs with eight users each. A specialized educator by training, she most often hosts “heavy cases” sent to her by the CISSS in her region. “We have seen 21 users pass through in four years in one of our resources. We have lived through so many investments of anything. At one point, we had four out of five users who had to be hospitalized at the same time [tellement ils étaient en crise] ! “says M.me Coombs, one of whose users experienced 12 resources in just three years before landing at home.

Her resource is seeing some stability for the first time in the past decade, but she’s also had to deal with what she calls « inadequate » placements.

We have seen 21 users pass through in four years in one of our resources. We have lived through so many investments of anything. At one point, we had four out of five users who had to be hospitalized at the same time.

“One day, an emergency patient was transferred to me. There were multiple attacks on our worker from day one. We had two security guards 24 hours a day, but he assaulted another user. It took a year and a half before he left our resource. You see the kind of urgency it takes! » launches Mme Coombs, discouraged.

Despite the crisis that the network is going through, Mme Couture remains convinced that the birth of new projects could change the game. “Fortunately, over the past three years, the ministry has acted. There are many new avenues opening up. But no matter how much we open them, the demand continues to increase tenfold, ”she admits.

The Ministry of Health and Social Services has specified to the To have to that within two years, about 900 places will open as part of the alternative houses project. In 2021, 1,975 people were still waiting to be accommodated.

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