The Toddler Observatory, supported by the Lucie and André Chagnon Foundation, unveiled a new report on Tuesday which highlights the difficulty of obtaining specialized health and education services for children with special needs.
According to the document entitled Toddlers needing special support: How to promote their full potential?many children find themselves hindered by both lack of access to health resources and lack of access to educational resources since they have not first received a medical diagnosis.
“In Quebec, not all children have access to the services and support they need at the right time, which deprives them of opportunities to develop their full potential,” we can read in the very first line of the report. signed by the director of the observatory, Fannie Dagenais. She adds that this situation violates the rights of children with special needs, since it is contrary to the principle of equal opportunities.
According to what the observatory reports, parents seeking specific services encounter a multitude of obstacles. We are talking about excessive delays, difficulties in obtaining financial assistance, or even difficulties in obtaining specialized educational services.
“What parents tell us is that they are facing an obstacle course,” says M.me Dagenais. Above all, it is difficult to know the existing services that your child could benefit from. Then, it is even more difficult to access it because you have to have a diagnosis confirming the child’s need.
The problem is that there are long waiting lists to obtain said diagnosis. “And once we have our diagnosis, we find ourselves on other waiting lists to have access to the various services that the child greatly needs,” summarizes the director of the observatory.
Putting needs first
However, this lack of access to professional resources can have significant consequences on the development of children, since the period from 0 to 5 years old is crucial in their development. Some may therefore suffer from not having obtained language, motor or cognitive support in a timely manner.
“Not being able to act early prevents us from preventing the transformation of small developmental difficulties into much larger problems for the health, development, but also the future well-being of the child,” denounces Fannie Dagenais.
On this subject, the director of the observatory calls for proactive action based first on the needs of children rather than waiting to obtain a diagnosis which often arrives too late or which may prove imprecise. Mme Dagenais points out that two children who receive the same diagnosis do not necessarily have the same needs. You have to know how to be agile to offer them personalized support.
Then, beyond health support resources, we also deprive children of educational support resources, because once again, a diagnosis is required to benefit from professionals in childcare. These professional resources are often associated with specific funding, reserved for children who have been screened by a health professional.
Parents on edge
In addition to being interested in toddlers, the observatory focuses on parents. He reports that the pressure they experience can have harmful consequences on their mental health and financial situation.
Some find themselves forced to give up their jobs or reduce their work duties in order to meet the special needs of their child. Others are forced to invest large sums of money in private health services in order to obtain a faster diagnosis and follow-up for their child.
Programs still exist to help these parents who have to come to terms with both parenthood and the additional burden of their child’s special needs.
This is the case of UnisSon, developed at the CIUSSS du Centre-Sud-de-l’Île-de-Montréal. This team made up of specialized educators, psychoeducators, physiotherapists, speech therapists and other specialists aims to support families whose child shows signs of a possible autism spectrum disorder or developmental delay. The team offers tools to parents so that they can better support their child in their development until they enter school.
“We really have an approach that is linked to the needs of the child,” explains Nancy Deschambault, specialized educator and specialist in clinical activities for the UnisSon program. The intervention is carried out from the first report of a hypothesis, and not upon obtaining a diagnosis which can take months or even years. Current program timelines are just 90 days.
Launched in 2017, UnisSon is a precursor of the Act Early program deployed by the government across Quebec. This platform aims to accelerate the screening of children with suspected developmental delay.