“They make it a vegetable”

Bouquet of flowers and glass in hand, Marie-Perle Vézina smiles in a photo taken on her 30th birthday. Four years later, the same young woman has a swollen face. A video shows her in a hospital room, completely cut off from reality, nodding frantically. When they look at these images of their daughter, Colette Éthier and Richard Vézina are heartbroken. When they placed her in accommodation nine years ago, they did not believe that her condition would deteriorate so much.

“They make it a vegetable,” laments Mr. Vézina. “She no longer has a life,” adds M.^me And yesterday. The young woman asked The Press to tell [son] history “.

The parents recognize it: their daughter’s case is serious. Marie-Perle Vézina has a mild to moderate intellectual disability. Mental health disorders. She has a deletion of chromosome 9, a disease that affects 50 people worldwide. She has Gilles de la Tourette syndrome and a serious behavioral disorder. She lived with her parents until the age of 25, until, exhausted, they resigned themselves to placing her in lodging.

From 2015 to 2023, the young woman stayed in 13 living environments: two host families, an intermediate resource, a residential center and three continuous assistance resources (RAC), all interspersed with psychiatric hospitalizations. On two occasions, dissatisfied with the services offered, Marie-Perle’s parents took her home. In certain circles, she had happy days. But the situation never lasted, his parents say.

“I have often been told that my daughter had a Cadillac at home. But there, I had to be content with having a Lada…”, says M^me And yesterday.

“What’s going to happen when we’re gone?” »

The story of Marie-Perle Vézina and that of Alexandre, presented in the following tab, recall that of D., a severely disabled 9-year-old child housed last year at the Le Jardin Unit in Laval and whose story was featured last month in The Press. These cases are far from unique, according to Delphine Ragon, coordinator at the PARDI organization, which offers support to parents and loved ones of people living with an intellectual disability.

In one of the RACs, Marie-Perle Vézina was “filled with drugs and left in her room”, denounce her parents. Supporting photos show the many bruises their daughter has suffered over the years, including two black eyes. Every time, “have answers [sur ce qui s’est passé] is difficult, says M^me And yesterday. […] We have to fight all the time.”

In 2023, Marie-Perle is entrusted to RAC Lily Butters in Saint-Hyacinthe. After five days, she was attacked there by another resident. She has intracranial bleeding and has blue lips, the parents say. After a 10-day hospitalization, she will return to the RAC, before being hospitalized again in psychiatry shortly after, another black eye, they say. Mr. Vézina is worried. “We are still here to defend the rights of Marie-Perle. But what will happen when we are no longer here? », he breathes. M^me Éthier deplores that the network is “unable to provide a safety net” around these accommodated people.

The CISSS de la Montérégie-Ouest (CISSSMO) did not want to comment on this case. Deputy director DI-TSA-accommodation at the CISSSMO disability programs directorate, Annie Couture explains that some RAC users are “very complex”, but she assures that the “level of expertise [des employés] increases”, so much so that journeys like Marie-Perle’s are “rather exceptional” and “some currently have very happy endings”. According to M^me Couture, there is a particular shortage of rehabilitation assistants in the RACs, but “the quality of services is there”.

Assistant to the director responsible for large-scale projects in DI-TSA accommodation at CISSSMO, Laurence Pérusse-Tardif affirms that attention is paid to the pairing of users in RAC to “prevent them from provoking each other”. But the number of accommodation places is insufficient in Montérégie. For youth customers only, we are talking about a 260% increase in accommodation requests since 2020.

Changes in progress

The government “came to the realization” in 2021 that the RACs were not necessarily the best environments to act with people with a serious behavioral disorder, recalls Lambert Drainville, press secretary to the minister responsible for Social Services, Lionel Carmant.

Since then, the government has invested to deploy an intensive behavioral rehabilitation (IBR) model. This model relies on teams made up in particular of psychoeducators and nurses. Seven regions currently have it. “All other regions are in the staffing process,” indicates the Ministry of Health and Social Services (MSSS). Three intensive behavioral rehabilitation units (URCI) were also deployed in Quebec, Montérégie and Bas-Saint-Laurent. These units, which are not accommodation resources but rather short-term care places, have a “preventive” approach and aim to resolve the problematic behavior of users to allow them to reintegrate their living environment, indicates the MSSS. Mr. Drainville indicates that the deployment of the RCI model “continues”.

But on the ground, changes are slow to materialize, according to Nathalie Boulet, family worker at Autisme Montréal. “There is good will. There are successful teams in certain RACs. But the reality is that there are still too many undertrained staff,” she says.

Maryse*, whose 21-year-old son has been housed for five years in different RACs in Greater Montreal, believes that he has since “achieved none of the objectives of his intervention plan”. “It was followed by 12 different specialized educators in five years […] It seems that the objective is not to give him independence. But just feeding him, showering him and giving him medicine, she says […] He goes for a walk twice a week. That’s all. We then wonder why he is aggressive…”

* Fictitious first name for fear of reprisals against one’s child