Mothers of children with intellectual disabilities and significant and sustained needs denounce that their rehabilitation center removes services from them for “administrative reasons” and affirm that they are left to their own devices. A “scandalous” and “inhumane” situation, believe several organizations, while the integrated university health and social services center (CIUSSS) of Centre-Sud-de-l’Île-de-Montréal ensures that services return “when It’s necessary “.
“I can’t do it alone, it’s impossible,” says Anouk Lanouette-Turgeon. I’m really exhausted from this system. »
Her 12-year-old boy with Down syndrome, who presents in particular a moderate intellectual disability associated with severe hypotonia, a motor delay which places him at the developmental level of a child under 18 months, receives the help of specialized educators from the Center rehabilitation program for intellectual disabilities and pervasive developmental disorders (CRDITED) in Montreal.
He has difficulties in all areas of his life, explains his mother. He doesn’t understand the world around him, she says, and is not independent. It is also very difficult to understand him when he speaks.
However, recently, a CIUSSS team leader announced to the family that she would no longer have access to the services that the young boy has been receiving for several years. A decision that surprised. “We are told, in unbearable jargon, that we are “revising service trajectories” for users who have more than five years of so-called continuous service,” says Anouk Lanouette-Turgeon. It’s not even true that the service has been continuous with the pandemic, as well as the service gaps that we have experienced. »
Her son was starting “to respond better to services,” she said. But the parents will have to manage on their own with a plan for “continued learning”, and beforehand “coaching” aimed at “the generalization of the different winning strategies” for their boy, we can read in email exchanges with the head of service.
Her child, however, needs a specialized educator, says his mother, because he has great difficulty learning on his own. “It takes skills that I don’t have, for example just to teach how to hold a pencil correctly, tie your zipper or brush your teeth,” she describes.
Lack of humanity
This is a “cavalier” case closure and “inhumane” treatment for the family, bluntly asserts Isabelle Perrin, resource person at the CRDITED Montreal Users Committee.
“An intellectual disability or an autism spectrum disorder are permanent conditions, and we seem to be losing sight of it,” she says. There is no cure for that, and families need support, they cannot do this work alone. »
Intellectual disability or autism spectrum disorder, these are permanent conditions, and it seems to be lost sight of. We can’t cure that.
She criticizes the fact that there was no prior clinical evaluation in this case. “Is the boy healed, and does he have any needs?” What we learned in this case is that even before having the proper evaluations, we announced a closure,” she said.
The rights organization Parents for Intellectual Disability (PARDI) notes a tendency for CIUSSS to want to “equip” parents so that they integrate actions that help the child progress. “The teams train parents to become caregivers,” explains the coordinator, Delphine Ragon. But a parent cannot become their child’s advocate. He can support learning at home, but he cannot be solely responsible for its development. »
Anouk Lanouette-Turgeon’s boy is in theory entitled to a 24-month detention, which allows for an intervention or reactivation of the case. However, the mother deplores that the head of the CIUSSS department confirmed to her that her file had been closed and instead told her to go through the access counter if necessary, which The duty noted in email exchanges with the main stakeholders.
Not a lifetime closure
The monitoring mechanism is however still in force, confirmed Duty Carla Vandoni, director of intellectual disability, autism spectrum disorder and physical disability programs (ID, ASD and DP) at the CIUSSS du Centre-Sud-de-l’Île-de-Montréal.
Without wanting to comment on this particular case, she adds that there are no directives regarding the closure of files that are five years old or more. “It has nothing to do with the years, because the services can last a few months or several years, it really depends on the needs,” she explains. We look at whether the objectives of the intervention plan are achieved and whether the person still needs specialized rehabilitation services at this time, and whether the user or their family are well equipped. »
And these are not “closures for life,” says the director, and families can reapply for services. “We come back when it’s necessary,” emphasizes Carla Vandoni. She adds, however, that “the goal is to make people autonomous.” “They must not be dependent on us for life,” she says.
Waiting list times for intellectual disabilities at the access counter respect Quebec targets. “If it’s an emergency, it takes 72 hours. If it’s a high priority […], we have a maximum of 90 days, but often, we get there faster. If it is a moderate priority, so something that is not urgent, but that we will have to work on eventually, we have a maximum of 365 days, but again, we get there before this period,” he lists. -She.
She admits that people are waiting for services and that “hundreds of requests” come in every year. “We have the responsibility for the population, we must ensure that we use our resources and serve the entire population as much as possible. » Hence the fact that a break is sometimes necessary, to “help the next person on the waiting list”.
“Dysfunctional” functioning
Valérie Larouche, whose daughter has been on the lookout mechanism for a year, speaks for her part of a “dysfunctional” system and constantly wonders if the problems of her daughter, who has a severe intellectual disability and other diagnoses associated, are serious enough for the rehabilitation center to get involved again.
“She would always have to be, for example, in opposition before the meal for there to be an intervention,” she says. But she will do it often, at several times during the day, for many different reasons, and that’s not a good answer. »
“We intervene more gropingly,” she says. It’s more tiring, because it’s a lot of trial and error. »