Young people with an intellectual disability | The “little kings” will have their “kingdom”

Despite the financial obstacles, the ambitious project of a former model is taking shape: a “smart house” where eight young people living with an intellectual disability will be able to live together without parental supervision. Vânia Aguiar showed the future “kingdom” to The Press.

When Vânia Aguiar crossed the threshold of the future home of her “little kings” for the first time, she “shed a tear”.

” Of joy ! “, specifies the former international model determined to improve the lot of children living with a moderate to severe intellectual disability.

They are his “little kings”. Young people who do nothing alone, who do not speak. Some also live with Autism Spectrum Disorder (ASD).

Children whose birth has upset the daily life of their family who have unfortunately often been predicted a dark future. Or no future at all.

We find her on a hot day in July on the construction site of the “intelligent house” in the Côte-des-Neiges district six months after our first meeting.

We made his portrait in The Press last winter as part of a series on “Makers of Change”.

At the time, Mr.^me Aguiar was very worried.

The project was stalled due to rising construction costs.

However, following our report, a deluge of donations from individuals and businesses as well as a contribution from the Government of Quebec – an announcement is expected shortly – allowed him to balance the budget. Nearly $2.5 million was raised.

Inspired and inspiring readers

Father of a 19-year-old boy living with trisomy 21, Eric Deschênes felt challenged when reading the article.

In addition, there is a cruel lack of social programs for people living with an intellectual disability. “The challenges are greater to integrate people with moderate to severe disabilities and thus have access to adapted programs,” said Mr. Deschênes, very admiring that Mr.^me Aguiar devotes his energies to those who suffer most from “service holes”.

His family owns a company – Groupe Deschênes – which is very committed to improving the lot of people living with an intellectual disability. This time, it was Mr. Deschênes on his own behalf who made a “major contribution”, in the hope of inspiring others to contribute to this type of project.

A “unique” model

Herself mother of a “little king”, Henri-Louis, 27, M^me Aguiar shows us around the house with overflowing enthusiasm.

“It is unique as a model. We want it to be much more flexible than an intermediate residence or a CHSLD, ”explains the one who is president and founder of the Fondation des petits rois.

Since the birth of her disabled son – “the most imperfectly perfect I could have had” – her greatest concern has been for her child’s future when she and her husband are gone.

She visited intermediate resources. She imagined Henri-Louis rocking all day in front of the TV. She then swore to herself that he would never live there.

Six years ago, therefore, she plunged into a colossal new project: financing the construction of a “smart house” where eight young people could live together without parental supervision. Projects to improve the lives of young people like her Henri-Louis, she has led several over the past twenty years.

M^me Aguiar managed to find the land and, above all, the necessary money. But construction costs have skyrocketed during the pandemic, and the initial project estimated at around 3 million has become a project of almost 6 million.

Ignore any detail

Always dressed to the nines, M^me Aguiar shows us the space provided for the elevator. Because young people will “age”. “They will form a family until the end of their lives,” she said with obvious relief.

A supervisor will live there permanently. Professionals will be hired so that young people can continue their learning. And technology can support them in their quest for autonomy. Major companies, seasoned architects, researchers from the University of Quebec at Trois-Rivières, the local CIUSSS and the Montreal Geriatrics Institute are collaborating on the project.

At the entrance, in the bathrooms and in the kitchen, there will be screens that will tell them how to dress, “whether it’s 30 or -30”, how to brush their teeth or even how to fill the dishwasher.

M^me Aguiar has neglected no detail to ensure that the youngsters are happy there. Every week, she takes part in meetings on the progress of the work. “Madame Vânia, she is special,” says site superintendent Michel Boyer. I have never met someone so determined. »

At first, “guys found me really demanding,” she laughs.

The ex-model insisted that Mr. Boyer and his boss at Axim Construction – site manager Jonathan Gomes – visit a school for children with intellectual disabilities and autism.

“I don’t have any in my family. I did not know that, autism, ”describes Mr. Boyer who boasts of the educators – “saints” – whom he met there.

“I learned a lot of things, continues the sympathetic entrepreneur, like the fact that they can work and that they are loyal employees. »

All kinds of experiences

Today, the “guys” better understand the insistence of Mr.^me Aguiar on details like the quality of lighting. “Children are destabilized by cold, blue light,” she points out. The two-storey building has abundant windows, precisely to favor natural lighting.

In the large backyard, a wooded path will be laid out as well as a garden. The land is sloping, enough to delight these older children who can slide there in winter.

In the basement, a Snoezelen room – a safe and calming space that provides sensory experiences – will be set up. Another large room will be dedicated to motor skills.

“Les Grands Ballets de Montréal will come to give dance workshops there”, boasts the one who has multiplied partnerships with all kinds of organizations, including Loto-Québec, Urgences-santé and L’Oréal Canada, over the years.

Eight organizations – “soon to be nine” – offer work trays to “little kings”, who otherwise would have to stay at home since they are no longer in school after 21 years. They perform tasks appropriate to their ability, such as shredding paper or watering plants. The heaviest cases have a daily companion.

Another spin-off from the report: institutions have come forward to offer new sets. Collège Jean-Eudes – a private secondary school located in the Rosemont district – will welcome eight young adults next January. “It will be wonderful for the students and our young people to rub shoulders,” she believes.

The house is not yet inaugurated that already M^me Aguiar dreams of reproducing the model throughout Quebec. “I would give him a medal,” the site superintendent confided to us before taking leave of us to return to work.