More than 20,000 Quebec children have been “screened” by Agir Premier, a program that aims to detect developmental delays in children under five as quickly as possible. This is what Lionel Carmant, Minister responsible for Social Services, claimed in mid-February on Twitter. But how quickly did these toddlers receive the necessary services? According to a survey by Duty, the average wait for speech therapy is at least 10 months in about ten regions. Delays deemed unacceptable by professionals in the field.
Caroline, whose real name we keep secret to protect her daughter’s identity, has been waiting for three years for a speech therapist for her child. When she was 18 months old, her pediatrician suspected a language delay. Her daughter being “a functioning child”, her case was not considered a priority by the local CISSS, she explains. “It’s very long,” said the mother from Montérégie. “We are helpless as parents. »
Now four and a half years old, her little girl will start kindergarten in September. “What I keep in mind is school,” says Caroline. Currently, it is not falling significantly behind. But when she gets to school, I think that’s where the problem will come out the most again. »
According to Lionel Carmant, more than one in four children arrives in kindergarten with a developmental delay.
The duty asked some 20 healthcare establishments the average time taken to obtain a speech therapy intervention service through Agir Premier — the majority of the program’s requests are related to language delays. In about ten regions, this wait is at least 10 months.
The average time for an individual or group intervention in speech therapy varies from 14 to 18 months at the CIUSSS de l’Ouest-de-l’Île-de-Montréal. The longest wait is 805 days, or two years, due to a “significant shortage of speech therapists”, justifies the establishment. The situation is not much better on the North Shore: 13 months on average. This period can extend up to three years, according to the local CISSS.
“I call that winning the postal code lottery,” says Paul-André Gallant, president of the Ordre des orthophonistes et audiologistes du Québec. It’s worrying. »
He points out that according to current scientific data, the wait considered “acceptable” in order not to harm a child’s development is between 1 and 3 months when the risk of language difficulties is high, as in the case of children spotted by Acting Early. “There are regions where the delay is triple, quadruple that,” he laments.
“Act late” or “Act at some point”
After her daughter’s screening, Caroline took part in a language stimulation workshop offered to parents by Agir jeune. In 2022, the family benefited from around six home sessions with a specialized educator. “She gave us little tools — in the form of songs, for example — so that my daughter could practice her pronunciation,” says the mother. But she is not a speech therapist. She can’t diagnose. »
Fortunately, her daughter’s childcare center has developed a “little program” to help her. “They take my daughter with a friend with whom she has fun and with whom she gets along well. For one hour a week, they help her practice and stimulate her language,” explains Caroline. The mother also followed speech therapists on Instagram to develop tips.
A few weeks ago, a speech therapist from Act early – “incredibly kind and very professional” – assessed the girl. She will be allowed four follow-up appointments.
Now, “acting” is not just screening. It is also acting on the problem that has been detected. And that’s where we still have a long way to go.
“Acting early, I think it’s a great program, says Caroline. But it’s the lack of staff [le problème]. There’s a side of me that understands the situation and the side of me, Mom, that’s a little angry. I suspect they’re doing what they can, but we’re helpless. »
The twenty or so people interviewed as part of this survey all emphasized that: Acting early is a good idea and its objective is noble. “Now, ‘acting’ isn’t just screening,” says Paul-André Gallant. It is also acting on the problem that has been detected. And that’s where we still have a long way to go. »
In the community, some have renamed Act early “Act late” or “Act at a given time”. As a joke or out of spite. “It’s called Act Early, but it’s more like Act Late! says Cynthia, a special education technician in the program, who keeps her real name secret for fear of reprisals from her employer, a Montreal CIUSSS. “With the endless waiting lists, it’s far from early service. »
The wait is not as long in all areas. In the Laurentians, the average waiting time is 6 months for a group or individual follow-up. Rachel Bleau, who lives in this region, says she is “very satisfied” with the services of Agir earlier. About a year ago, she contacted the program because of her son’s language delay.
About seven months elapsed between the first Agir Premier assessment and the speech therapy follow-up. Her son benefited from the support of a specialized educator, then was taken in charge by a psychoeducator for his behavioral problems. The parents have recently received help from another psychoeducator. “It’s like parental coaching,” explains Rachel Bleau.
The 3-year-old boy is making progress. “The language disorders have improved a lot, observes the mother, an educator in the daycare service. He is able to make complete sentences and he articulates much better. He is able to recognize his emotions and to express them. »
Average time for intervention in speech therapy in the CISSSs and CIUSSSs of Quebec
The D projectr Carmant
Minister Lionel Carmant entered politics in 2018 precisely to extend the Agir Premier program across Quebec. He had implemented this digital platform at the CHU Sainte-Justine, where he practiced as a pediatric neurologist. The goal? Caring for children with developmental delays before they enter kindergarten.
Announced at the end of January 2019, Act early was finally rolled out gradually in 2021 and 2022. According to the MSSS, requests for speech therapy have increased in “several establishments” because of Act early. Recruitment and retention of speech-language pathologists remains a “challenge”. “These different elements can contribute to an increase in the time it takes to take care of”, writes the ministry to the Duty.
“There are families who go to the private sector because the waiting lists are too long”, deplores Véronique Lizotte, project manager at the Table de concertation pour l’entrée en services de garde des enfants avec les handicaps – Montreal area.
Psychoeducator Carole Forget receives toddlers in a private clinic. “These are children with language problems that turn into behavioral problems because they don’t understand and aren’t understood,” she explains. I work on managing emotions. His clients are on a private speech therapy waiting list.
Remedial work, like in surgery
For the president of the Association of Pediatricians of Quebec, the DD Marie-Claude Roy, renaming the program “Agir tard” is unfair. “It’s a shocking formula,” she said. But already to detect early, it is a success. In recent years, we often had children who were caught at 3 or 4 years old for whom the developmental delay had never been highlighted. »
This program directs families “immediately towards stimulation, support and tools for parents”, she underlines. An appointment with a speech therapist is therefore not always necessary. For a quarter or a third of the children, the stimulation offered will suffice, according to DD Roy, who bases his estimate on his practice and not on scientific data.
The government must nevertheless catch up on the waiting lists, as is the case in surgery, judges the DD Roy. To achieve this, Quebec must retain and recruit professionals, such as specialized educators, psychoeducators, speech therapists, occupational therapists and physiotherapists.
“Surgeons need rooms to operate. We need professionals to support and stimulate children. »
Possible solutions
To reduce delays, a physiotherapist from Agir jeune believes in eliminating paperwork. “We could see double the number of patients if the bureaucracy were cut in half,” says the employee who is not authorized to speak to the media.
The Dr Gilles Julien, social pediatrician, judges the “principle” of Act early “interesting”. But he would have preferred the program to target vulnerable children and not all 0-5 year olds. According to him, vulnerable children should have access to a “fast track” to obtain services. Currently, parents have to go through the entire Act Early process (questionnaires to fill out, workshop and stimulation group, waiting list, etc.), even when the Dr Julien is “about 99% sure” of the diagnosis. “Our families often give up,” he laments.
With endless waiting lists, it’s far from early service
Cynthia, a special education technician with Agir Premier in Montreal, believes that the process needs to be simplified for families. According to her, screening could also be done in daycare settings. “In daycare, I see very serious cases, children who self-harm, they are 5 years old, they go to school, says Cynthia. The mother is afraid of the CLSC. She never consulted and she did not have any vaccines. She doesn’t believe that. »
If identified, these children would be prioritized. “You can’t fix everything,” says Cynthia. If we could be more present in our daycare centers and in the community, that would help a lot. »