• CASDA knows these are unprecedented times for the disability community and wishes to support how we can building back better as a more coordinated sector emerging out of the COVID-19 crisis. To do so, CASDA is coordinating autism-related data modules and pan-disability data collection initiatives to help select meaningful indicators, mitigate duplication, and ensure that collected information leads to action.

Disclaimer

We are curating a list of surveys for autistic people and their families as well as resources for researchers from our members in the research community. This list is not comprehensive and it has not been systematically reviewed.

If you think a survey or a resource is missing, please fill out our Google form to add to this page. For more information, email us at info@casda.ca.

Sections

Autism-Related Surveys on COVID-19

COVID-19 Disability Survey:

Launched May 4, 2020

These surveys will be repeated over time with adjustments made based on findings from previous time-points. The ultimate goal is to use the results to formulate plans that can be used by local organizations, government, NGOs, and others to support people with disabilities during COVID-19 restrictions and through the secondary and tertiary impacts and recovery phases

How will this survey be used?

  1. To measure indices of health and well-being in people with disabilities and family members; and
  2. To identify COVID-19 related needs of people with disabilities.

About this survey:

  • This project is led by Abilities Centre with research support from Kathleen Martin Ginis, University of British Columbia;
  • The survey takes approximately 15-20 minutes to complete;
  • To participate, you must be a person living with a disability, a parent of a child with a disability, and/or a family member of a person with a disability.

Contact: disabilitysurvey@abilitiescentre.org

Pandemic Canadian Autism Needs Assessment Survey (PanCANS):

Launched May 13, 2020 – closed May 24, 2020

This new survey, developed due to COVID-19, is for individuals and families in the autism community to share how they have been impacted by changes related to the COVID-19 pandemic.  The results of the survey will be compiled into a report and shared widely.

How will this survey be used? 

  1. To understand how the autism community in Canada is being impacted by the COVID-19 pandemic;
  2. To inform service organizations of what services and supports are most helpful for families; and
  3. To inform governments of how the autism community has been impacted and advocate for increased supports in response to the COVID-19 pandemic and future emergency situations.

About this survey:

  • This project is led by Autism Speaks Canada with research support from McMaster Autism Research Team (MacART) and Mackenzie Salt, McMaster University and in partnership with CASDA;
  • The survey takes approximately 10-15 minutes to complete;
  • To participate, you must be an autistic self-advocate or a caregiver/family member.

Contact: estherrhee@autismspeakscan.ca
Pour la version française, cliquez ici.

This survey is now closed for participation.

COVID-19 Sibling Study:

Launched May 13, 2020

Adults who have siblings with developmental disabilities want information to help them in their various roles and to better support their siblings. This information is especially important at the time of the COVID-19 pandemic.

How will this survey be used?

  1. For the Centre for Addiction and Mental Health (CAHM) to provide you with helpful resources and better support; and
  2. To understand how siblings are impacted by COVID-19 pandemic, in particular if your role on how you support your sibling has changed.

About this survey:

  • This project is led by CAMH;
  • The survey takes approximately 15 minutes to complete and you will be asked to complete the survey again six months later;
  • To participate, you must be a sibling to an adult with a developmental disability.

Contact: To participate or for more information, please contact SiblingStudy@camh.ca.

Survey of Technology Use in Children and Youth with ASD During the COVID-19 School Closures:

Launched May 2020

This survey seeks to understand how the recent COVID-19 school closures have impacted technology use in children and youth with ASD as well as parents’ perceptions about the resulting influence on their family’s well-being.

How will this survey be used?

  1. To characterize the ways in which technology use has changed during the COVID-19 pandemic as well as the resulting impact on families; and
  2. To help address questions and concerns that parents have expressed about surges in technology use during this unprecedented time.

About this survey:

  • This project is led by the Holland Bloorview Kids Rehabilitation Hospital and the University of Toronto;
  • The survey takes approximately 10 minutes to complete;
  • To participate, you must be a caregiver to a child or youth with ASD.

Contact: To participate click here. For more information, please contact rcardy@hollandbloorview.ca.

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Disability Data Coordination

COVID-19 Resources Canada:

McGill has helped create a network of researchers, students, and web developers who launched a national portal to help those involved in COVID-19 research and development locate human resources, reagents, equipment and information in a timely manner.

CanCOVID:

See if you can become a member of CanCOVID, an expert community of Canadian COVID-19 researchers, clinical collaborators, and healthcare stakeholders mandated by the Office of the Chief Science Advisor of Canada communicating over SLACK, an online platform. CanCOVID seeks to connect national research efforts in order to support collaboration, coordination, and communication between those working on projects related to COVID-19. The goal is to optimize our collective response to this public health crisis.

A Disability-Inclusive Response to COVID-19:

A human rights-based approach to disability is required to ensure that no one is left behind. The UN has written recommendations on the collections and availability of disaggregated data by disability, the use of internationally recognized methods, and tools such as those from the Washington Group and the WHO Model Disability Survey.

NIH – Open-Access Data and Computational Resources to Address COVID-19:

COVID-19 open-access data and computational resources are being provided by federal agencies, including NIH, public consortia, and private entities.

Resources:

  • Data resources to address COVID-19
  • Computational resources to address COVID-19
  • Supporting resources

ISARIC – COVID-19 Clinical Research Resources:

The results in this report have been produced using data from the ISARIC COVID-19 database. The aim is to accelerate our collective understanding of COVID-19 to help improve patient care and inform public health policy. Huge thanks to our partners who are sharing data to this end. We welcome additional partners to collaborate in this effort.

Resources:

  • Clinical data collection
  • Data management and hosting

The human rights of children with disabilities during health emergencies: the challenge of COVID‐19:

This editorial, published in the journal of Developmental Medicine & Child Neurology (open-access), invites researchers and clinicians working in the field of pediatric disability to advocate for clear standards on inclusive humanitarian responses in our communities during the COVID-19 pandemic. It guides a rights-based approach for disability data coordination, interpretation and actions during the COVID-19 pandemic

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