Since the World Health Organization declared COVID-19 a pandemic on March 11, 2020, children with neurodevelopmental disabilities and their families have faced unprecedented challenges in accessing supports from a home base.
Navigating this new normal has called for new ways of delivering services and supports. To fast-track solutions, Mitacs and Kids Brain Health Network (KBHN) have partnered to support community-based research to mitigate the challenges frontline organizations face in the provision of services and supports during the COVID-19 pandemic.
We are delighted to announce that Mitacs and KBHN, in collaboration with community partners, have awarded seven projects and their investigators the necessary funding to pursue such research. Across these seven projects, nine internships have been awarded for a total of $140,000 for critically important research. Recipients of the Mitacs-KBHN awards are:
- Vivian Lee, York University with Autism Ontario
- Jackie Guy, University of Western Ontario with Canadian Autism Spectrum Disorder Alliance
- Maude Champagne, Queen’s University with ABLE2 (formerly Citizen Advocacy Ottawa)
- Ashish Seth and Jessica Kohek, University of Calgary with Cerebral Palsy Association – Alberta
- Wendy Mitchell and Rosslynn Zulla, University of Calgary with Pacific Autism Family Network
- Vanessa Fong, Simon Fraser University with ACT – Autism Community Training
- Buse Bedir, University of Victoria with Child Development Foundation of British Columbia
Each project receives a $20,000 stipend allotment provided by Mitacs, KBHN, and community partners.
This funding will support four- to six-month internships. Each will offer graduate students and postdoctoral fellows an opportunity to gain experience in working with community-based organizations, businesses, and frontline service-delivery agencies on COVID-19-related research, with an emphasis on services and supports for children with a neurodevelopmental disability and their families.
Please join us in congratulating the awardees on successful applications.
Quotes:
Nicky Lewis, CEO, KBHN and Dr. James Reynolds, KBHN Chief Scientific Officer
“Kids Brain Health Network remains committed to mobilizing the knowledge generated through research into practice — especially during the COVID-19 pandemic where families and organizations continue to face increased barriers to access and delivery. This collaboration with Mitacs encourages solution-focused thinking that will ultimately improve the lives of vulnerable children and their families.”
John Hepburn, CEO and Scientific Director, Mitacs
“Mitacs is proud to partner with Kids Brain Health Network to accelerate the development of research-based solutions for children affected by neurodevelopmental disabilities and their families. Important innovations depend upon mobilizing researchers to work with community-based organizations and businesses. Thanks to the funding support of the Governments of Canada and the provinces, together we will develop the necessary solutions that will help children and their families.”
About Kids Brain Health Network:
- Since 2010, Kids Brain Health Network (KBHN) has been supported by the National Networks of Centres of Excellence (NCE) Program. The NCE is a Canadian government initiative, which funds partnerships between universities, industry, government, and not-for-profit organizations to create large-scale research networks with the overarching goal of delivering socio-economic benefit to Canada.
- As a not-for-profit research network, KBHN researchers work to develop and implement innovative solutions and services with the potential to improve the lives of children living with neurodevelopmental disabilities and their families. In doing so, they collaborate with community, industry, government and non-profit partners and everyone who can play a role in advancing knowledge to improve outcomes for children with neurodevelopmental disabilities and their families.
About Mitacs:
- Mitacs is a not-for-profit organization that fosters growth and innovation in Canada by solving business challenges with research solutions from academic institutions.
Mitacs is funded by the Government of Canada along with the Government of Alberta, the Government of British Columbia, Research Manitoba, the Government of New Brunswick, the Government of Newfoundland and Labrador, the Government of Nova Scotia, the Government of Ontario, Innovation PEI, the Government of Quebec, the Government of Saskatchewan, and the Government of Yukon.
To learn more about each project, you can find their abstracts below:
| An Integrated Knowledge Approach to Communicating the Impact of COVID-19 on the Mental Health and Well-Being of Caregivers and Available Resources for Families Living with Autism | ||||
| Organization | Investigator | Academic Supervisor | Partner | Partner contact |
| York University | Vivian Lee (York University) |
Jonathan Weiss | Autism Ontario | Margaret Spolestra |
| Parents and families (i.e. siblings) with children and adolescents with autism often experience demanding stressors associated with providing care to their family member with autism. In partnership with Autism Ontario, I aim to create a report that will better understand what has been documented regarding the impact of the COVID-19 pandemic on caregiver and family functioning and identify the supportive programs that have emerged as a result, so that we can better support families living with autism. Before COVID-19, the literature has shown that parents of people with autism experience more stressors, more mental health problems and distress, and lower family quality of life, compared to the general population. As a result of the COVID-19 pandemic, these stressors and mental health outcomes have likely increased. Distancing requirements have halted many of the programs that parents rely on for respite and support (e.g. interventions, day programs, schools, adapted recreation and leisure, etc.). This means parents have little or no assistance outside of the family to care for their child with autism. It is essential to recognize the service needs of families, and share the evidence-based best practices that have emerged to support parents of children with autism who are faced with these pandemic-related demands. Using a comprehensive family coping model (called the Family Adjustment and Accommodation Resource Model) as a framework, the proposed project will report on how families balance the many demands they experience with the services and resources that support their capabilities, and how they make meaning of this process as a means of coping during the COVID pandemic. | ||||
| Pan-disability COVID-19 data leadership and coordination initiative | ||||
| Organization | Investigator | Academic Supervisor | Partner | Partner contact |
| University of Western Ontario | Jackie Guy (University of Western Ontario) |
Ryan Stevenson | Canadian Autism Spectrum Disorder Alliance | Jonthan Lai |
| The Canadian Autism Spectrum Disorder Alliance (CASDA) is a coalition of organizations and individuals committed to the development and implementation of a comprehensive National Autism Strategy (NAS) that addresses critical gaps in funding and policies which are preventing autistic individuals and their families from exercising their equal rights as Canadians. The unique challenges created by COVID-19 have created additional strain for autistic individuals and their families in Canada. It is necessary to coordinate autism-related data modules and pan-disability data collection initiatives for the autism community. This project aims to select meaningful indicators, mitigate duplication, and ensure that collected information leads to action, as well as curating available resources (on information, mental health, uncertainty, safe practices) for autistic people and their families. There is a need for the coordination of the information and surveys about COVID-19 that are continuously being developed and shared via various outlets throughout Canada. CASDA will collect information and resources specifically relevant for autistic people and their families and make it available in one accessible location (the COVID-19 Navigation Guide web page). Additionally, this project will allow CASDA to expand the coordination of information and resources by enabling evaluation, synthesis, and dissemination of information to encourage better collaboration between researchers and professionals seeking to support autistic individuals. | ||||
| Responding to the COVID-19 pandemic challenges for families with children impacted by Neurodevelopmental Disorders | ||||
| Organization | Investigator | Academic Supervisor | Partner | Partner contact |
| Queen’s University | Maude Champagne (Queen’s University) |
James Reynolds | ABLE2 (formerly Citizen Advocacy) | Heather Lacey |
| ABLE2 has three programs supporting families with children impacted by NDD. Since February 2020, the COVID-19 pandemic has brought many challenges to families already strained by the complexity of caregiving of children with neurodevelopmental disabilities [1]. Since the beginning of social distancing measures, ABLE2 programs have modified service delivery to now offer virtual support to their clients (i.e., virtual support groups, family support and training). ABLE2 staff have noticed an increase in groups’ attendance, caregiver burnout, social isolation and feelings of loneliness, mental health issues of all family members, and even increased violence in the home (through child-to-parent violence). In the hope to better respond to their clients’ needs, ABLE2 aims to assess the needs of caregivers during the public health crisis; in doing so, the organization seeks to adapt service delivery to best identify and meet the needs of this community. The goal of this application is thereby to determine the impact and effectiveness of virtual support groups and family services. Caregivers’ needs will be assessed through an online survey and qualitative interviews will be conducted; impact of virtual training will be assessed through pre and post training evaluation. | ||||
| Towards disability inclusive COVID-19 policy | ||||
| Organization | Investigator | Academic Supervisor | Partner | Partner contact |
| University of Calgary & The School of Public Health Community Health Science |
Ashish Seth, Candace Parsons & Jessica Kohek (University of Calgary) |
Jennifer Zwicker & Meaghan Edwards |
Cerebral Palsy Association – Alberta | Mezaun Lakha-Evin |
| Youth with disabilities and their caregivers are disproportionately affected both by the COVID-19 pandemic and the policy measures that are adopted in response. Given the increased risk for this vulnerable population, in emergency pandemic preparedness it is necessary for the government to engage in intentional planning and co-design of policy to meet the needs of youth with disabilities. Addressing these risks in the spirit of “Nothing Without Us” and the Accessible Canada Act, and in recognition of Canada’s domestic and international human rights obligations is critical. | ||||
| Development of Resources for a National COVID-19 Information Website for Families of Children with Neurodevelopmental Disabilities | ||||
| Organization | Investigator | Academic Supervisor | Partner | Partner contact |
| University of Calgary | Wendy Mitchell & Rosslynn Zulla (University of Calgary) |
David Nicholas | Pacific Autism Family Network | Sergio Cocchia |
| Directed by the Pacific Autism Family Network, Autism & Intellectual-Developmental Disabilities National Resource and Exchange Network (AIDE) is a wide-reaching initiative that is nationally and regionally focused in offering information and support to individuals with neurodevelopmental disabilities (NDD) and their families. It seeks to offer Canadians affected by NDD equitable access to credible, reliable and evidence-informed resources. This project specifically will focus on developing key information regarding COVID-19 that is relevant for children with NDD and their families. Beyond developing and curating evidence-informed information, the project will identify the experiences of users, and impacts of this information/support online resource, focusing on (i) web analytics, (ii) perceived outcomes, and (iii) processes and resources that foster those outcomes. Through various data sources and methods, evaluation will inform means to ensure optimal impact of online support related to COVID-19 for this population. | ||||
| Understanding the impact of COVID-19 on quality of life in families of children with Autism Spectrum Disorder in British Columbia | ||||
| Organization | Investigator | Academic Supervisor | Partner | Partner contact |
| Simon Fraser University | Vanessa Fong (Simon Fraser University) |
Grace Iarocci (Senior supervisor) Elina Birmingham |
ACT – Autism Community Training | Deborah Pugh |
| In response to the current pandemic, government action has been insufficient and has failed to address the major concerns and needs of families of autistic children in British Columbia. Parental employment changes, school closures, and a loss of respite and therapy services has exacerbated stress in already burdened caretakers of children with ASD. A partnership with ACT- Autism Community Training, a non-profit organization that provides information and training to families of autistic children and to professionals, would provide us with the opportunity to investigate the specific needs and experiences of families during COVID-19. A systematic review of the impact of pandemics on family quality of life and mental health will be conducted. This will allow us to evaluate previous research on this topic and will help inform the questionnaire items on our COVID-19 survey. After completing the systematic review, an online survey will be co-created with our partner organization to assess family quality of life, caregiver and child mental health, and accessibility and satisfaction with government relief efforts during COVID-19. A family engagement framework will be adopted in the current study which will allow us to engage and consult with members of the ACT community to plan, implement, and disseminate research findings. | ||||
| Novel service delivery models for children with neurodevelopmental disabilities and their families in light of the COVID-19 pandemic | ||||
| Organization | Investigator | Academic Supervisor | Partner | Partner contact |
| University of Victoria | Buse Bedir (University of Victoria) |
Sarah Macoun | Child Development Foundation of British Columbia | Brian Katz |
| Early childhood—the first six years of a child’s life—has been identified as a critical phase of child development in setting the trajectory for development through childhood and into adulthood. Longitudinal studies have demonstrated that early childhood experiences impact psychosocial outcomes as well as future income, high school graduation, and ability to find and sustain employment. For children with Neurodevelopmental disorders (NDDs) the early childhood years also represent a critical time for delivering interventions. In recognition of the importance of the early years as a critical developmental period, the Province of British Columbia developed the Early Years Framework which included a uniform model of service delivery throughout the Province. With the onset of the COVID-19 pandemic, many families can no longer access these services due to limited access to technology, the primary means by which services are being provided during the pandemic. Children with NDD’s may face additional risks as they may no longer have access to necessary services. The current research aims to address these concerns by engaging an intern to collect quantitative and qualitative data on the impact that COVID-19 has had on parents, service providers, and funders of services for children with NDDs. These results will be integrated into the existing multi-agency service delivery for young children within the South Fraser region and disseminated nationally. | ||||
