On the morning of the day Marie-Josée and I spoke to each other, his almost nine-year-old boy, F., washed his hands all by himself. He had not turned off the tap.
It is like that, F., he does everything, but half. “He gets dressed, but he does not get tied, he goes to the bathroom, but he does not wipe. When he does something, he does not finish, there must always be someone behind. “Like turning off the tap the other morning. Or watch him constantly, he’s “compulsive fugues”.
F. is autistic, he will be nine in two weeks and Marie-Josée, unlike the parents of children of that age, she can not let go play in the alley behind. “He does not recognize the danger.”
F. therefore requires constant attention.
Marie-Josée arrives with difficulty and misery to work part time, to reconcile the many appointments for F., “between one and four per week”, and run to the rescue of the school when it is called at the end of the day to tell him that his guy is in crisis, that he refuses to get on the paratransit.
“When he was younger, I had to stop working completely. There is not an employer who wants someone who has to be away from work all the time. For almost seven years, I have been working part-time, I do not really have a choice. But by decreasing my income, I also decrease my retirement. ”
She and her husband have been indebted for $ 30,000 in recent years to pay for valuations and services to the private sector.
“Services to the public are clearly inadequate.”
But it’s not so much that she’s bothered – she’s been getting used to it – but it’s the fact that F. does not fit into any support program, except for the Quebec supplement for handicapped children. $ 192 a month. “In Montreal, if you want to see a specialist, it’s around $ 100 for an hour …”
Marie-Josée applied for the Child Disability Supplement requiring exceptional care – about $ 1,000 a month – and she was refused three times. “It’s a process that is opaque, we are given a list of habits that are evaluated, but we do not know the criteria, the scales.”
As if there were no nuances. “Either he walks or he does not work. There is nothing in between. ”
In his assessment, F. “has serious limitations for each lifestyle and a total limitation for that which is defined as” liability “, since he must be under supervision 24 hours a day, seven days a week. obviously, it’s not enough to qualify. ”
Without really knowing why. “I have no problem being told that I do not qualify, but what I regret is that there is nothing in between, it is the total void.” is all or anything.
And they, it’s panthe.
Marie-Josée and many other parents as she remembers the words spoken by François Legault in the election campaign, September 6 precisely, when he promised help for “100% of families”, according to their needs. “We will not leave anyone behind. The assistance offered will be modulated according to the severity of the child’s disability. ”
It has the merit of being clear.
Marie-Josée wrote a letter on 1 st February to the Minister of Health, Danielle McCann, explaining his ras-le-bol, after receiving another rejection. “I no longer count all the refusals or even the lack of answers to my requests for help and support. I knocked on every door. Only yours remains. ”
Because there is nothing for children like F.
He is not the only one.
Marie-Josée lists her son’s main diagnoses, which, in addition to an autism spectrum disorder, include a severe language disorder, a provocative opposition disorder, and severe ADHD with impulsivity. It’s a lot of trouble for a little boy.
And for his parents.
But, obviously, not enough in the eyes of the government. “So he can not sit quietly on the chair of children needing regular or daily care could we say. But he can not sit on that of children with exceptional needs. He must sit between two chairs, in the black hole of services and financial support. In the void. ”
And that’s where they are, in nothingness.
Marie-Josée does not even dare to think of the moment when her son will be an adult, who risks being nothingness in nothingness.
Three weeks later, she had a response from the Director of Intellectual Disability, Autism Spectrum Disorders and Physical Impairment Programs. His heart cry became “mail 19-MS-01136”.
A coded heart cry, among many others.
She was reminded, basically, what she already knew. “We understand that the situation your family lives in is demanding and requires a lot of time and energy. Your son’s caregiver has done the annual assessment of your needs in the December Family Support Program and is available to support you. In addition, you can count on the professionals of the rehabilitation establishments involved with your son to assist you in the day-to-day management of your son. ”
You hear that noise?
This is the last door that closes.