We all know that this year has been challenging for parents, but it’s been even more difficult for children with disabilities and their families. The lack of educational supports, social contact, and therapies caused a severe fallout for some children. But what have we learned from this experience? Parents of children with disabilities shared their experiences with researchers at CanChild Centre for Childhood Disability Research. Their voices shed light on system gaps and teach us important lessons that will ultimately benefit all children. Parents told us that there’s no one-size-fits-all model, and policymakers need to listen to the people who know these children the best — their parents and families.
“It felt like children were forgotten; an afterthought; not important enough to have any plan even with four months and the following year to figure it out.” – parent of a child with a disability.
School is more than just academics
Children get so much from attending school beyond just academics. Schools provide access to social interaction and connection with peers and adults outside of the family. They also provide essential therapies and support to help children with disabilities thrive. Over the past school year, all parents had to make difficult decisions about whether or not to send their children to school. For parents of children with disabilities, these decisions have been particularly difficult since these children have a greater risk of health complications from COVID-19. However, school is where they receive essential supports (such as aides and resource teachers) and therapies (speech, occupational, or behavioural). If schools close, or if children do not attend, they miss out. Most parents had to deal with at least some school closures and find ways to support their children’s online learning, often while working at their jobs. During school closures, many children lost skills they worked so hard to achieve.
In some locations across Canada, children with the highest needs were able to attend school during some of the closures. Attending school gave students a place to go, but some parents reported that it was essentially a play-based environment with no actual teaching. Students were only able to interact with educational assistants, who provided basic care such as feeding or toileting. They could not interact with teachers or with other students. “Generally, COVID school was just a daycare experience”, says Kate, mother of two. In the end, children missed out both on academics and on social interaction with their peers.
Online learning has its perks and perils
For kids with disabilities whose schools were closed, virtual learning was a mixed experience. Many children received minimal or no virtual interactions with their teachers or educational assistants, in effect losing key long-term connections to important adults in their lives. Some children had no lessons. Others were not able to focus on screens and virtually interact with others. As a result, many children lost the academic and social skills they previously had. “We had nothing. Absolutely nothing. We went from a structured school environment with many supports for learning, to being sent home with a list of websites we could try. His learning was a disaster,” says Genevieve, mother of two teenage boys.
On the other hand, some children were able to make good progress at their own pace with their parents’ support. Some actually caught up on their skills as never before, which tells us that these children were not receiving proper supports at schools in the first place. But for these children to make the progress they did, parents had to drop everything and become teachers and therapists. Adam, a father of a 7-year old boy, says: “I had 9.5 months of ‘I’m your dad, I’m your teacher, I’m your therapist, and I’m your chef too.’” But policymakers and educators can’t assume that parents have the capacity to provide these essential supports on their own indefinitely.
There’s no one-size-fits-all model but one thing is sure: children need a place where they belong
The past year of living through the pandemic was difficult, but there is a lot we can learn. Schools are essential building blocks of society. Policymakers need to prioritize keeping schools open and safe. They also need to plan and prepare for another health crisis, and if it happens children with disabilities cannot be forgotten again. Currently, we have no nationwide standard to ensure the inclusion and participation of kids with disabilities. All children need a place where they belong and be with friends and adults (teachers, educational assistants, therapists) who understand their physical and mental health needs. They want to learn, connect, and have fun.
Each child is different, and every family is unique. There is no one-size-fits-all model that works for everyone. Some children might do best with a hybrid educational model of virtual and in-person learning and therapies. Families know best what works for them and what supports their children need. Government decision-makers and educators should hear parents’ concerns and address the gaps and inequities in learning. All children have a right to an education, and all children need to have appropriate supports to help them thrive.
Authors: Kinga Pozniak, Geil Astorga, Genevieve Currie, Danijela Grahovac, Rachel Martens, Amanda Doherty-Kirby and Olaf Kraus de Camargo are a group of researchers and parents affiliated with CanChild Centre for Childhood Disability Research, McMaster University.