L’accompagnateur: a pool of information for parents of disabled children

07 October 2024

L’accompagnateur: a pool of information for parents of disabled children

Justine LeBlanc is the director of L’accompagnateur. As she introduces us to this organization, Justine sheds light on the power of information to empower parents of people with disabilities.

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What is L’accompagnateur?

L’accompagnateur is a Web platform designed to support parents and other relatives of people with disabilities, depending on their age group, type of disability and place of residence in Quebec. The main objective is to facilitate access to useful information for people with disabilities, in a single one-stop shop. Our mission is to give families back the power to act, so that they can make the best, most informed decisions.

How did this project come about?

L’accompagnateur was created by two couples with disabled children, who saw a lack of access to relevant information. Parents’ schedules are busy enough; why should they have to go through tedious searches for resources? So they came up with the idea of an online portal that would consolidate all this information. A first version was developed in 2007. Of course, there have been many improvements since then! L’accompagnateur, in its current NPO form, has been helping people since 2020.

What services does the organization offer?

L’accompagnateur’s free platform is designed by parents, for parents; we make sure to maintain a constant dialogue with them and listen to their needs.

There’s a directory of close to 1,700 resources: community organizations, programs, specialized day camps, private companies and more. They are classified according to three main search filters: type of disability, age group, and region of residence in Quebec. The information provided must correspond as closely as possible to the reality experienced by families.

Secondly, an annual program offers around fifty free virtual conferences. These are mainly presentations by experts, followed by question periods that are much appreciated by families. These conferences are often an opportunity to forge links between parents facing similar problems.

In addition, a news section provides information in the form of articles and blog posts.

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Can you tell us a little about the Parcours de vie service?

Yes, this tool was created in response to needs expressed by families. It is used to visualize, “in the spirit” of a timeline, all the milestones in the child’s life journey, according to age group and disability. For example, if the child is eight years old and has an intellectual disability, we can see all the steps to be taken and the different resources that can support this child and their family. This allows us to be more prepared and avoid being in a constant state of emergency. In fact, we’re currently working on improving this section; the aim is to help people find the information they’re looking for as quickly as possible.

What are the greatest challenges for parents?

The availability of resources comes to mind. It’s not enough to simply find the resources, you have to be able to access them! L’accompagnateur can’t guarantee that parents and families will have access.

There are also financial resources. Sometimes, in couples, one person quits their job to look after the child on a full-time basis. All that’s left is one salary, some caregiving and… a lot of expenses.

Since the creation of L’accompagnateur, what has changed in terms of the “power to act” that the information provided by L’accompagnateur gives parents?

Use of the platform is increasing every year. Some organizations tell us they are receiving more calls and requests from families who have consulted L’accompagnateur. It translates into great visibility for them!

We are also developing close relationships with organizations with which we are forging partnerships. For example, we work closely with CHU Sainte-Justine to introduce parents to L’accompagnateur as early as possible in the child’s care trajectory. It’s a great recognition by the community of the relevance of our mission!

I’m also thinking of the fact that some organizations have decided to stop giving conferences and presentations to relay the needs of their clientele to L’accompagnateur. This gives them more time to offer direct services, which L’accompagnateur does not.

What has L’accompagnateur learned about these parents? What have you learned?

We’re just finalizing a strategic plan for which a consultation showed that 89% of people searching the site actually find the information they’re looking for. The relevance of a tool that brings together all the appropriate information in one place has been confirmed. The challenge now is to continue to make ourselves known and to forge more partnerships.

On a personal note… I’ll always remember a mother during the question period at a conference. Her 25-year-old son had an intellectual disability and spent his days watching TV. She didn’t ask any questions. She just said: “Today, a world of possibilities opens up for me.” It was a beautiful moment. Those words have stayed with me for the past two years. When you can have this privileged contact and the possibility of improving, if only a little, the daily lives of families, for me it’s priceless…

Thanks to Justine LeBlanc for sharing her insights with us. L’accompagnateur is one of the 5 organizations involved in the creation of Parent aidant | Cap 18 ans, a digital platform for parent caregivers dealing with the administrative complexities of special needs children turning 18.

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