Get in Line and Wait your Turn; Navigating the System

My desire to create The Little Red Playhouse, an integrated community preschool and intervention center sprang from my own experiences as a parent, as well as my express wish to assist others who are undergoing similar trials. Our current public health system, unfortunately, is not progressive enough to value this group of children with developmental disabilities, such as Autism Spectrum Disorder (ASD). Delays and waiting lists are long on the road to finding help and intervention. If parents are persistent and lucky, they may ask enough questions to their paediatrician to be referred for an opinion from a specific clinic, or a neurologist. The wait list for such an appointment is approximately a year to 18 months long. Until then, parents cannot ask for publicly funded services or even be certain what rehabilitation services the child may need, or have access to until they speak to a mediator of the public system.

A mediator, otherwise known as a Social Worker (SW), from the Local Community Services Centre (CLSC), is the only person within our public system who is responsible to help navigate the labyrinth of our public healthcare system. Once parents are connected, the SW requires a formal diagnosis from one of a few places that provide a diagnosis within the public system: Ste. Justine Hospital or Montreal Children’s Hospital, The Douglas Hospital, RDP Hospital and now they will accept to review a private diagnosis. The formal diagnosis documents are then forwarded to the rehabilitation centre that services the postal code region that the "Client” (child/family) lives in. That centre then evaluates the needs of the client and puts the family/child on another waiting list for up to another 18 months to 2 years. If the diagnosis comes from a private centre, the child is not on the same list of priority as those that are waiting on the public list.

If a child is diagnosed at age 3–4 and then waits 1-2 years to get diagnosis, the child could be 4-6 years old before services are offered. However, the public system only provides funding for services up to age 5 or 6 and only for Applied Behaviour Analysis (ABA) or also known as IEBI. If the child enters kindergarten at between 5 -6, at the start of service, then the service will be reduced to 10 hours per week depending on the rehabilitation centre you live in, versus the 20 that the child is entitled to. The average age of a child being diagnosed in the public system is approximately 4.5 to 5 years old. Currently, the number of children on the waitlist on the Montreal area is 875, according to : “Seeing the Future: A Bold Strategy for Autism Spectrum Disorder and Intellectual Disability in Quebec”, a report prepared by McKinsey & Company for the Miriam Foundation, April 2014. The report states “In Montreal, approximately 875 children aged 0-17 are waiting between 12 and 24 months for a diagnostic evaluation at the four specialized child hospital clinics [Douglas Hospital, RDP Hospital, Ste Justine Hospital, Montreal Children’s Hospital].”

This situation is therefore problematic, as research indicates that the best prognostic possible comes from early intervention , meaning starting before age 3.

If you are fortunate and can afford to have your child diagnosed privately, you have to make the decision about what your best choice is for intervention based on the recommendations made in your formal diagnosis and what you, as the parent feel is in your child’s best interest. Making a decision to start early intervention prior to getting an official diagnosis from a publicly funded clinic or privately in order to maximize the child’s best prognosis is your decision. Research does support that in general, children that receive services before age 5 and develop their language skills tend to show the most progress. Whatever is your decision, it does not change the reality of wait lists for publically funded government services and in the long run the support that you would require to attend a publically funded school eventually. The prevalence of ASD is rising; now between 1 in every 65 children will be diagnosed with an ASD (Wong et al., 2014). That is 1 in 42 boys. Today, in Québec, only few people that are diagnosed with an ASD will receive support from the government for any meaningful amount of time to be clinically effective.

The waiting lists in Quebec and lack of funding compared to other provinces across Canada are substantial. The types of services and quality of services vary in our own province as well. The costs for privately funded services across the province and the country range from 35.000 to 60,000 per family per child, per annum . Parents need to get informed about Disability Certification required by Revenu Canada and tax credits to be able to afford any intervention. Parents and families and friends that are willing to raise their voices and get involved will make a difference.

Quebec has publically made a commitment to help make changes for our children at the first Quebec Form on Autism held in Quebec City Feb. 11-12, 2016. Quebec says they have their list of priorities, I encourage all parents to get informed, and help make change for the future of your children and those that are inevitably coming after they reach their teenage and adult years. This is a wonderful step in the right direction.

The reality is that the clock starts ticking the day a child is suspected of an ASD. What this means is that from the time a parent recognizes ASD, they are faced with a timeframe to help their child benefit from early intervention. I encourage parents to get informed and don’t wait.

- Sharon McCarry


Applied Behaviour Analysis (ABA)