Quebec is facing a housing crisis for people living with an intellectual disability and/or an autism spectrum disorder (ID-ASD): cases are increasingly complex, emergencies, daily, and the network faces a shortage of resources. The duty spoke with some 40 families, resource owners, health network employees and experts who are sounding the alarm.
The lack of mandatory training for staff as well as the lack of funding and manpower compromise the safety and rehabilitation of users in accommodation resources, according to the community stakeholders met as part of this investigation. . Since 2019, nearly forty resources for users living with an intellectual disability and/or an autism spectrum disorder (ID-ASD) have closed their doors following an investigation for serious reasons. , according to data obtained by The duty.
“There are closures, displacements. They are treated like humans with less rights or sensitivity, when they should be given even more attention. For me, it stems from the fact that there is not always the required expertise in the resources and among those who make decisions, “said Véronique Hivon, Minister Delegate for Social Services from 2012 to 2014 and who is is looking at the fate of DI-ASD users.
In Quebec, more than 5,000 of them live in resources mostly run by private companies, fully paid for by the public health network. Despite the vulnerability of this clientele, no training is compulsory for the personnel who work with them on a daily basis.
“Employees in intermediate resources [RI] are less trained, less paid, but they have an enormous responsibility towards these vulnerable users! exclaims Jean-Philippe Longpré, director of member services for the Association of Intermediate Accommodation Resources of Quebec (ARIHQ), who observes an increase in the number of users with serious behavioral problems in the resources of accommodation.
“Even a beneficiary attendant who went to school does not see an ID-ASD component. However, when you go to speak with an autistic or an intellectually disabled person, there are different approaches, ”adds Josué Timothée, owner of a family-type resource (RTF).
Following the deinstitutionalization of the 1980s, many adults living with an intellectual disability or an autism spectrum disorder (ID-ASD), but also with mental health problems fell under the responsibility of the centers of welcome. The latter have created group homes managed by workers from the 24/7 health network to provide services. “The reception center had to own the buildings. We thought it was very expensive, so as demand increased, we had to find a slightly less expensive formula. This is where we created the RIs and the RTFs,” explains Marcel Faulkner, founder of the organization SOS DI Services publics.
In an RTF “M. or Mme Everyone can accommodate 6, 7 or 8 users in their own home with a per diem [indemnité quotidienne] paid by the CISSSs and CIUSSSs. Employees can be spouse, mother, brother […] owner. It is a private resource, managed on a private basis,” laments Mr. Faulkner.
IRs operate on the same principle, but the owner does not have to live on site. In both cases, the owner does not have to have taken any training, but must have “experience” with DI-ASD clients and demonstrate that he has no criminal record.
“It’s very vague. There is no specific number of years or criteria as to the owner’s experience,” says Mr. Timothée, who argues in favor of mandatory training. His spouse and business partner, Arielle Léveillé, also the owner of an IR, adds: “It’s up to me to train my employees to intervene. It’s rare to find attendants, especially since I can’t offer them $26 an hour. [salaire au public]. The establishment could give this training and we would be obliged, as for law 90 [pour la distribution de médicaments et certains actes délégués]to make sure they did it,” she suggests.
The Ministry of Health and Social Services (MSSS) does not plan to make continuing education mandatory. However, it encourages the continuous training of employees.
“Professional services are provided by institutions. The resource’s work is more at the support/assistance level. There are so many different clienteles and needs that the preferred training must be based on the needs of the IR and its clientele. “Wall-to-wall” training may not be the solution”, specifies the ministry.
Furthermore, the per diem currently granted to resources does not allow them to offer sufficiently competitive wages to hire qualified and experienced labour.
An obsolete funding model?
Martin Caouette, professor of psychoeducation at the University of Quebec at Trois-Rivières, denounces the “inconsistency” of the funding model for these resources. Each user is currently evaluated by the health establishment with which he is affiliated, and a rating is assigned to him. This rating will thus determine the daily allowance that will be paid to the resource that will house him to meet his needs. “What is awful, […]is that if a person gains in autonomy, the person who accommodates him earns less and less financially”, specifies the one who holds the chair Self-determination and Handicap.
A point of view shared by Annie Couture, assistant director of the intellectual disability, autism spectrum disorder and physical disability programs at the CISSS de la Montérégie-Ouest.
“Our mission is for the user to need as little support as possible. The instrument could use some revamping, but it is useful. But should all compensation fit on this instrument? Maybe not”, note Mme Sewing. Inflation and the price of real estate are also not taken into account in the remuneration of resources.
Contacted by The dutythe Ministry of Health and Social Services considers that its tool [d’évaluation] is “sound, validated and adequate”. He recalls that “if a resource considers that the services determined in the Instrument do not reflect the intensity of the services required, processes are provided for in the letters of agreement in order to carry out a review of the classification”.
A paying industry?
Most of the families who confided in the To have to denounced the poor quality of the food that was served to their loved ones in the resources. A 27-year-old autistic user even shared photos of his meals taken over the past six years. “The one I’m quite proud of is a moldy sandwich. I also grabbed spaghetti with ketchup,” recalls Kevin Lafontaine-Durand.
Can being a resource owner be paid? The duty analyzed the sums paid by health establishments to the various resources on their territory under the Quebec law on access to information. The latter receive an average of $5,000 per month per user. This amount varies according to each person’s rating, which is determined by their level of autonomy and the extent of their needs.
The Timothée-Léveillé couple does not hide having been seduced by the financial and time freedom that their RTF brings them. “For the amount of work and the stress it represents, it’s up to everyone to decide if you are paid enough or not. Personally, I find that working with users is rewarding as little work will give you,” says Mr. Timothée. According to the management model, it is possible to generate profits while ensuring the well-being of users, even if the per diems are deemed insufficient.
“Our users are very demanding, they are “rated” high. Having a third employee would not be too many times, but it would no longer be financially viable. It’s a business, not volunteering,” says Ms.me Léveillé, which opened an eight-seat IR last June, where two day workers and one at night work.
The current employee/user ratios in the resources are insufficient and are denounced both by the owners of the resources and by the relatives of the users.
“When I started in the industry, it was often former specialized educators who chose to welcome an audience with greater needs into their homes. But it was a limited number, three or four people maximum. Over time, it eventually became more of a model of mini-institutions. And that limits rehabilitation, ”says Martin Caouette.
According to him, it is urgent to set up a Secretariat for people with disabilities. An opinion shared by the former Minister for Social Services Véronique Hivon.
“I imagine that there is something extremely frustrating for these families who see so much money invested in concrete with Millionaire Seniors’ Homes at the door, while they will wait and wait to have a place in an IR, have no stability, sometimes left an IR without notice, have no activities, no respite. Accommodation and DI-ASD services are a blind spot for the ministry,” said Ms.me Hivon.