Fondé en 1983 --Unis pour la diversité et l'égalité raciale


Montreal, April 15, 2018 —Parents of children with autism spectrum disorder (ASD) will begin to take legal action against Quebec health agencies and school boards for failing to provide care, treatment, support, and protection to their children, the scope of which amounts to systemic discrimination and the violation of these children's civil rights.

At a press conference held today, some parents stated that they are prepared to file civil rights complaints with the Quebec Human Rights and Youth Rights Commission for discrimination based on disability and social condition. They are encouraging parents and people living with ASD to do so the same in order to prevent the growing deterioration of resources and services for these individuals that is forcing many families into poverty and despair.

“We cannot allow the government to continue to violate our children's and our civil rights,” said Katharine Cukier, mother of Benjamin, a 15 year-old teenage boy with classic autism.

A report by the Public Health Agency of Canada released in March 2018 estimates that in Quebec, one in 64 of 5 to 17 year olds, has a diagnosis of ASD. It is estimated that there are 140,000 persons with ASD of all ages in Quebec, and that with their families, there are almost 500,000 Quebecers who face the challenges of ASD.

While there is presently no national autism strategy, Quebec has a 2017-2022 ASD action plan with a budget of $145 million (or $29 million annually). In 2016, Ontario announced a $333 million five-year plan for 40,000 children and youth with ASD.

Many children with autism and their parents in Quebec face major systemic obstacles in accessing adequate healthcare, social services, and education, including:

❏ Long waiting lists for a diagnosis at CLSCs and hospitals, and lack of access to necessary treatment: The waitlists to obtain treatment such as speech therapy, occupational therapy, and Intensive Behavioural Intervention are long (up to 2 years). By the time children are at the top of the list, they can be considered ineligible due to surpassing the age limit;
❏ Lack of access to professionals trained in ASD and Intellectual Disabilities (ID): Rehabilitation centers have cut off access to ASD/ID specialists, and many of them staff their facilities with workers with little training in ASD/ID, which can aggravate the conditions of children and youth with ASD;
❏ Lack of access to educational resources for students with ASD: Many schools do not provide accommodations for children with ASD including not having qualified teachers or educators with ASD expertise and having a high student to teacher/aid ratio in order to provide proper care. This can lead to students with ASD and behavioral challenges being expelled and forced to resort to homeschooling;
❏ Inadequate rehabilitative interventions can lead to over-sedation and/or an increase in aggressive and maladaptive behaviours because of the lack of timely individualized therapeutic care. This places the child or youth with ASD at risk for long-term permanent dysfunction and removal from their family home;
❏ Caregiver burden due to inadequate support and services leading to financial hardship: The lack of access to adequate care, education and day care also leads to financial problems as parents have to carry the costs of care, some having to quit their jobs to be full-time caregivers or turn to private autism therapies (speech therapy for one child can cost $5,000).

“We cannot carry the burden caused by the government's austerity and privatization agendas anymore,” said Cukier. “Care and compassion has been replaced with number-crunching bureaucracy that forces many families into poverty and despair, and that's not acceptable.”

The CRDI removed her son's home educator and delayed 9 months before delivering intensive autism services when her son was in crisis in 2017. At one point, he was sent to a group home that was inappropriate for him. Cukier's family had to deal with the consequences of workers without ASD/ID expertise and a high turnover of staff, which does not allow for continuity of care. In 30 days, over 40 different people worked with her son, thus worsening his condition.

Sam Kuhn and his daughter Charlotte, who has ASD and is non-verbal, are penalized by long waits and high costs of privatized care. When Charlotte was 18 months old, her family sought public therapeutic services, after finally receiving a formal diagnosis three years after a paediatrician referred her to obtain one. Today, Charlotte, now 7, is still almost completely non-verbal. Had Charlotte obtained speech therapy, she would have been able to speak today.

“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,” said Kuhn.

“The long wait is a long descent into darkness for my daughter and my family,” he stated.

After her son, Nicolas, now 17, was diagnosed with ASD, Claudia Taboada quit her job as a lawyer in 2003 in order to care for him full-time. Her family faced long waitlists for care. A lack of educational resources forced her to home-school her son after multiple disastrous attempts with three high schools between 2007 and 2011.

“Budget cutbacks and the lack of school resources discriminate against women because they force a parent, often the mother, to quit her job to care for her child,” said Taboada. “This is a disguised way of sending women back to the home,” she added.

A recent study estimates that 50% of mothers quit their jobs within the first two years following a diagnosis of ASD of their child.

These parents will work with CRARR in mounting complaints of systemic discrimination. CRARR will also help prepare a submission to the United Nations when it will examine later this year Canada's performance on the International Convention on the Rights of the Child.

“We need to address the situation of children and adults with autism from a systemic discrimination lens,” said CRARR Executive Director Fo Niemi. “Quebec's record on the rights of children, women and people with disabilities needs to be scrutinized by the courts and international human rights agencies, because austerity and indifference has left many children and their parents behind,” he noted.