Canadian children with disabilities and their families are facing a great number of challenges during the COVID-19 pandemic. That’s why in May, on the initiative of one of our patient-partners, a group of approximately 12 CHILD-BRIGHT representatives gathered for a virtual round table with Krista Carr, member of the federal COVID-19 Disability Advisory Group and Executive Vice-President of the Canadian Association for Community Living.
Our group, representing various facets of the network, including researchers, patient-partners, and network leaders, exchanged with Krista Carr about concerns and issues that members of our network have brought to our attention, issues that she could bring back to the federal Disability Advisory Group, in relation to children with brain-based disabilities and their families.
Krista Carr is a member of the federal COVID-19 Disability Advisory Group and Executive Vice-President of the Canadian Association for Community Living.
Some of these points presented included the fact that due to the sudden transition to home care occasioned by the pandemic, many parents and caregivers have been cut off from their support networks, including from educators, medical professionals, and respite care providers. This has been challenging for parents.
The inability to access personal protective equipment (PPE)—reserved for front-line workers but not prioritized for caregivers providing medical care at home—was also highlighted as a major concern, alongside unequal access to online care services and to technology for education.
““This pandemic has reinforced what has been stated by many advocates previously, that where there were cracks in the system, they now feel more cavernous. Added to this as well is inequitable access to services across the provinces,” one attendee shared.”
With reduced or unequal access to services across provinces, not to mention additional financial burdens on parents who often have to make financial sacrifices to care for their children with disabilities, ensuring that home caregivers are well supported and that the value of their work is recognized was front and center in the round table discussions.
““It would be incredibly helpful to hear that my personal choices and abilities are enough, and they are supported,” expressed a parent-partner.”
Because support service workers for children with disabilities are not currently considered ‘essential workers’, the equally important behavioural and psychological needs of children with disabilities are also not being met. One member pointed to an increased dependence on behavioural medications as a result of the pandemic.
With so much uncertainty at present, we shared that a question looming large in the minds of many of our members is: “What’s expected moving forward?” How will the transition to adult services function during this crisis; what will school and education look like in the fall; and how will medical care be impacted? Planning for these events is more complex for families of children with disabilities and more information is needed.
Krista Carr listened attentively and shared that several concerns raised were already topics under review by the federal Advisory Group’s radar. Some were new and would be taken back to the group for consideration.
CHILD-BRIGHT members in attendance also had the opportunity to share some of the initiatives that we have launched to support children with disabilities and their families during this timeframe.
Head to the MyCOVIDQuestion Twitter page to read the Q&As
These include our request for support from the SPOR Evidence Alliance to undertake a rapid review evaluating the risk of COVID-19 to children with brain-based developmental disabilities, and our collaboration with CanChild and the Kids Brain Health Network, to launch My COVID Disability Q., a new Twitter Q&A hub geared towards Canadian children and youth with disabilities and their family members.
With the help of our patient-partners, CHILD-BRIGHT also continues to populate a COVID-19 resource page for Canadian youth with disabilities, their families and support teams.
CHILD-BRIGHT Network Director Annette Majnemer was especially appreciative that Krista Carr lent an ear to the group, and stressed the commitment of all in attendance to help the federal government address the concerns raised. “We are a small but close and committed community,” she said. “We will help in any way we can.”
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UPDATE: We have consolidated the concerns raised in a new infographic. Download it below.
