On Friday, January 8, 2021, Simon Fraser University (SFU) hosted a free online dialogue on how the COVID-19 pandemic has impacted families of children and youth with special needs.
The event showcased findings from a research project funded through a partnership with MITACS, Kids Brain Health Network and Autism Community Training (ACT). KBHN-Mitacs Intern and PhD student, Vanessa Fong, and her supervisor, Dr. Grace Iarocci, Professor and Director of the Autism and Developmental Disorders Lab at SFU, presented the findings from their research project, titled “Understanding the impact of COVID-19 on families of autistic children.”
The research highlighted the barriers families and organizations continue to face regarding access and delivery. It found that the overall perception was that the government failed to address these children and their families’ concerns and needs during the pandemic.
The project surveyed 238 caregivers between the ages of 25-64 years with their autistic children between the ages of 2-21 years. The survey assessed life quality, mental health, and accessibility and satisfaction with government relief efforts during COVID-19.
The results showed that the disruption of services deeply impacted autistic children’s sleep quality and daily routine. More importantly, children with autism showed increased incidences of anxiety and fear and behavioural problems, with 37 percent of caregivers fearful that their child might hurt a family member. Out of the caregivers surveyed, nine percent considered placing their children in the care of the Ministry of Children and Family Development (MCFD) so that their children could gain access the necessary services and supports they needed.
Meanwhile, many parents experienced severe disruptions in their family relationships, sleep quality, and mood. Survey participants reported that the Ministry of Children and Family Development was not forthcoming with information or services that could help with their challenges and that the Ministry of Education resources were also not that helpful.
Fong indicated that they were “shocked by the severity of their findings” while Iarocci explained that “resilience happens within the context of support.” Families who find it increasingly difficult to stay afloat are not receiving adequate services and resources to assist them.
Other panelists Dr. Jennifer Charlesworth, the BC Representative for Children and Youth, Tracy Humphreys, Chair of BCEdAccess and Karla Verschoor, Executive Director of Inclusion BC, all presented research, reports and stories from their communities and recommendations to the government, including “Left Out: Children and youth with special needs in the pandemic” and “COVID-19 and the Impact on Children’s Mental Health.”
The overarching message from the panelists is the desire for families to feel seen and heard, and for families to know that they are not alone in their struggles for inclusive, equitable and needs-based services.
Ultimately, the panelists called for transparency and consistency with planning to ensure families receive support especially during times of public health crisis. They further emphasized that collaboration between community organizations and persons with lived experience will ultimately facilitate a special needs framework to ensure inclusivity and fairness for all.
