Children with disabilities disproportionately affected during COVID-19

By Lucyna Lach and Donna Thomson

New study offers families parent training for children affected by neurodevelopmental disorders.

The global pandemic has been hard on Canadians, but it has hit families affected by disability disproportionately, particularly young families. School-aged children with disabilities were suddenly without supports of any kind. 

Schools were shuttered in March, and while remote learning was put in place, gone were Education Assistants or Special Needs Coordinators. Parents were expected to teach their children alone, many of them still juggling full time work. 

Therapy centres were also shut down until recently in most provinces, which meant that psychological, speech and occupational therapy were no longer available. Many parents spoke of watching their children lose hard-earned advances that were months or years in the making. 

Specialized recreational programs were closed and respite care was not available. Homecare workers were often unavailable or were asked not to come since many also work in long-term care facilities where the coronavirus was rampant.

Some disability supports and services are slowly coming back, though not all and not fully.

Return to school plans have not been friendly for children with neurodiversities. In many boards, there are no Education Assistants and children who are not fully mobile and who have learning challenges cannot follow the school protocols without assistance. Yet, children with neurodiversities need the school experience even more than other children.

How are parents supposed to be employees, therapists, teachers and caregivers for their children with disabilities all at once? It is an impossible ask. 

While parents of kids with disabilities love and take joy in their children and their children’s development, it can also be hard to juggle the many economic, physical and emotional demands that society places on their shoulders with little additional help. 

Our social and economic supports for persons with disabilities in Canada have never been robust and resemble a patchwork jumble of underfunded programs and services that are hard to navigate. Federal and provincial/territorial disability supports have provided only the most modest top-ups during the pandemic. 

The proposed guaranteed income supplement for persons with disabilities introduced in the recent Speech from the Throne is promising news, but the details are yet unknown.

In the midst of COVID-19, we’ve been running our study for families affected by neurodevelopmental disability (brain-based disorders), called The Strongest Families Neurodevelopmental Program: Parents Empowering Neurodiverse Kids.  Our study is assessing a parent coaching intervention designed to teach parents skills remotely — over the phone and Internet — in the comfort and privacy of their own home.

With the help of parents of neurodiverse children who are valuable members of our research team, we have invited parents of children between the ages of 3-14 and with a diagnosis of Autism Spectrum Disorder, Cerebral Palsy, Epilepsy, Global Developmental Delay, Down Syndrome, Fetal Alcohol Spectrum Disorder, severe learning disability and other neuro-developmental disabilities to take part. Participants receive a $150 honorarium and may also receive free parent coaching. 

The coaching is designed to help parents learn best practices for managing their child’s behaviours related to self-regulation or arising from unexpected situations, transitions and other challenging behaviours.

We had no idea that a global pandemic would make our coaching program so readily aligned with the needs of families. We’ve learned from our parent advisors that helping parents help their neurodiverse children is a valuable path forward and a lifeline for many.

We recognize the value in neurodiversity so the study does not aim to ‘fix’ or ‘cure’ the child, but to provide support and skills to make daily living activities more manageable. We use positive parenting methods to do this.

The study, which is continuing its efforts to recruit hundreds of families across Canada, is in-process, but early findings and previous related studies show that providing parents coaching skills can lighten their load and allow them to focus on the positive aspects of being parents.

Interventions like ours can only contribute a drop in the bucket of what families with disabilities need to thrive – and they can thrive, with the right supports. 

Governments and school boards need to step up now and show families affected by disability that they matter, that their communities care and that, together, we can help them flourish.

Dr. Lucyna Lach is an associate professor in the School of Social Work at McGill University. For information about the Strongest Families Study from the CHILD-BRIGHT Network, visit crfh.ca/neuro

Donna Thomson is the co-author of The Unexpected Journey of Caring (Rowman & Littlefield) and author of The Four Walls of My Freedom (House of Anansi). She is the mother of two grown children, one who has severe cerebral palsy and medical complexity.