Parents of adults with one or more disabilities ask for help to ensure adequate medical care for their children.
Families can always count on Center Philou, in Montreal, for a little respite, summer camps or even school services.
But once they reach adulthood, different spheres of society forget about them.
This is very often the case at the medical level because the pediatric follow-up offered since their birth has ended, says Isabelle Cantin, mother of two daughters aged 16 and 23 with multiple disabilities.
“We fall into a big black hole or it is as if the system had not foreseen that our adults would arrive at that age,” she laments.
Laurence Cherrey, mother of Manon, also explains that the follow-ups are complicated.
“Manon is followed, for example, in five different hospitals, five different places. A place for neurology, for gastro, a place for his chair, a place for his teeth. There is no central place because there is no one with this expertise, ”she laments.
In order to help these families, the Center Philou wishes to create a center of expertise in collaboration with the CHUM and Sainte-Justine.
If the project is progressing rapidly, nothing is settled yet.
“The parents could then be followed. There would be fluidity in the care, ”says Diane Chenevert, general manager of the Center Philou.
This center currently accommodates more than 200 children, but would like to do more by creating an accommodation center.
The Quebec government proposes to welcome them in CHSLDs or in future homes for the elderly, when the parents can no longer take care of them, a proposal with which the families do not agree.
The Center Philou is proposing the creation of a small accommodation center in Montreal that would be exclusive to these young people.
“We want to start with a unit of about 10 children for accommodation and about 15 children for the day center,” says Ms. Chenevert.
For the project to see the light of day, the Government of Quebec would have to invest at least $ 6 million.
– According to information from Harold Gagné