Parents who are exhausted, stressed out and depressed from taking care of their autistic children say Quebec is failing their children and their families.
“I have no life, no work, no social life and there is stress in our marriage,” said Kathleen Salvail, whose four-year-old son and two-year-old daughter have autism.
Salvail said she had to pay $3,000 to have her children’s autism diagnosed privately because there was a two-year waiting list in the public system in her hometown of Mirabel.
“If we didn’t get a diagnosis, we couldn’t get services,” she said on Sunday during a press conference in Montreal.
“Because of the waiting lists, many parents have to pay for private services, and the financial burden on families is immense.”
The parents say they are planning to file complaints with the Quebec Human Rights Commission for discriminating against their children.
“We cannot allow the government to continue to violate our children’s rights and our civil rights,” said Katharine Cukier, whose 15-year-old son Benjamin has autism.
“We cannot carry the burden caused by the government’s austerity and privatization agendas anymore.”
Cukier denounced the lack of services for severely autistic teenagers, saying it has a devastating impact on their development.
In Quebec, there are 76,000 people living with autism.
Parents say they face many obstacles when trying to get care and access to professionals who are trained in dealing with autistic children.
Many schools are not equipped to deal with autistic children and a lack of individualized therapeutic care leads to autistic teenagers becoming aggressive and acting out.
Cukier said budget cuts meant her son lost his home educator and she had to wait nine months for autism services when her son was in crisis last year.
She had a concussion after her son hit her 30 times.
“My son is not violent, he is autistic and was suffering,” she said.
While Quebec has pledged to spend an additional $145 million over five years on improving services for autism and reducing waiting lists, Ontario is spending $333 million over five years, the parents say.
When Quebec announced its autism action plan last year, the government said the new funding would reduce waiting lists for a diagnosis, provide funding for intensive behavioural intervention therapy up to the age of five and make respite services available for parents.
Salvail said some waiting lists have decreased, but said the respite offered to parents is insufficient. She only received $300, which covers three days of respite.
âWe are competent women who have had to stay home with our children and we have no life,â says Claudia Taboada, seen at a press conference in Montreal on Sunday, April 15, 2018.
Christinne Muschi /
Claudia Taboada said she had to quit her job as a lawyer in 2003 to care for her son Nicolas, who is now 17.
A lack of educational resources forced her to home school her son after staff in three high schools were unable to deal with an autistic child with behavioural issues.
“I had to become my child’s therapist,” she said. “We are competent women who have had to stay home with our children and we have no life.”
Sam Kuhn, whose 7-year-old daughter Charlotte is autistic and non-verbal, said the Quebec government has not provided her with any speech therapy since her autism was diagnosed.
“Like many, I can’t afford the thousands of dollars for private speech or occupational therapy and my child has lost precious time to be functional like other children her age,” he said. “This is systemic discrimination against children.”
Fo Niemi, the executive director of the Centre for Research Action on Race Relations, said his organization would assist parents with their legal complaints to the human rights commission.
“Quebec’s record on the rights of children, women and people with disabilities ne to be scrutinized … because austerity and indifference has left many children and their parents behind,” he said.
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