Long COVID Patient Experience Project

The Long COVID Patient Experience Project was developed to connect people living with long COVID and health scientists so that they can learn together about the impact of long COVID and use this information to guide research to solve the puzzle of long COVID.

Have or had Long COVID? Want to share your story? Take the survey here: https://patientscientist.ca/long-covid-survey

The website is a partnership between the BC SUPPORT Unit, the Post-COVID Interdisciplinary Clinical Care Network, Arthritis Research Canada, University of British Columbia, Simon Fraser University and Population Data BC.

Report on Recommendations for the 2023 BC Budget

In mid-June 2022, Disability Alliance BC, in partnership with the BC Poverty Reduction Coalition and the BC Chapter of Disability Without Poverty, presented to the Select Standing Committee on Finance: Annual Budget Consultation for the BC Government. Every year, the BC Government invites members of the community to present on recommendations that should be put in next year’s BC Budget.

In particular, DABC advocated for the inclusion of the following in next year’s budget:

  1. Increasing the monthly Disability Assistance rate (known as PWD)
  2. Establishing a comprehensive system of coverage for Medical Equipment and Assistive Devices
  3. Investing in Affordable, Accessible Housing.

DABC had 5 minutes to speak on these three issues, of which our Executive Director’s speech can be found here.

On August 11, 2022, the Committee released their Report on Budget 2023 Consultation and it can be found online here: https://www.leg.bc.ca/content/CommitteeDocuments/42nd-parliament/3rd-session/fgs/budget-consultation/Budget-2023-Consultation-Report.pdf

While all three of DABC’s recommendations were referenced in the report, the Committee ultimately did not officially make any recommendations that echoed our advocacy, with the exception of Recommendation #205: “Review the eligibility and administration of income and disability assistance, including earning exemptions policies and thresholds, with a view to reducing barriers to work, providing flexibility, and ensuring that the most vulnerable have access to all necessary supports and medical needs.”

DABC also supports the Committee’s recommendation to create “an independent disability protection office to safeguard the rights of people with disabilities in BC and advocate for those experiencing abuse, neglect, and discrimination.” (page 6 of the report).

Here are all of the recommendations in the report related to disability-focused funding:

1. Create an independent disability protection advocacy office to safeguard the rights of people with disabilities in BC.

2. Broaden the terms and conditions of Workplace Accessibility Grants so that programs and supports can be put into place for small business owners with disabilities including neurodivergent people.

3. Install reader boards for public transportation, including BC Ferries, to improve accessibility for the deaf and hardof-hearing community.

25. Increase mental health supports for students at postsecondary institutions across the province, including by providing funding to hire BIPOC counsellors, and continuing funding for mental health counselling and referral services.

44. Invest $15 million in amateur sport to improve affordability for low-income families and other underserved populations, and ensure that the sector is inclusive, diverse, equitable, and accessible.

86. Provide research-driven increased supports and infrastructure to mitigate the worst socioeconomic and health impacts of climate change (including reduced air quality, food and water insecurity, extreme heat, extreme cold, flooding, and extreme storms) on low-income groups, specifically including seniors, unhoused people, lone parent families, Indigenous communities, people with disabilities, migrant workers, newcomers, people with mental and chronic health conditions, sex workers, and people who use drugs.

118. Prioritize and fund the development of myalgic encephalomyelitis-specific billing codes for BC clinicians and the development of continuing medical education credits, modules or incentives for BC physicians, medical students, and other medical professionals to attend training about myalgic encephalomyelitis.

119. Provide the Brain Injury Alliance with a secure, annualized, and ongoing funding agreement to offer more stability and opportunities for growth to address emerging issues in the brain injury sector.

123. Ensure timely and affordable access to all multiple sclerosis treatments approved by Health Canada.

124. Provide access to arthritis-specific care, including pain management therapies.

128. Recognize that poor dental care leads to poor health outcomes by providing improved dental coverage for lower income British Columbians with specific attention focused on providing better care for people with disabilities and with diabetes.

140. Implement a funding strategy that covers the cost of modern prosthetics and orthotics, including the costs associated with emergency repairs, and ensure that BC adults with disabilities or physical impairments can access orthotic coverage after their 19th birthday.

143. Increase access to long-term counselling for children and youth who experience all types of abuse-induced trauma.

144. Develop targeted measured outcomes in mental health; and a plan to improve mental health and address addictions, the plan can include education to increase awareness, reduce barriers and stigma while also increasing access to counselling and treatment.

145. Identify and fund programming for identity-based counselling and mental health support services that are intersectional, culturally safe and LGBTQ2SAI+focused.

205. Review the eligibility and administration of income and disability assistance, including earning exemptions policies and thresholds, with a view to reducing barriers to work, providing flexibility, and ensuring that the most vulnerable have access to all necessary supports and medical needs.

Research Study: Survey and Interview on Disability and Reproductive Health during COVID-19 in Canada

Who is eligible?

You may be eligible if you:

  • Identify or may be identified as having a disability
  • Identify as a woman, trans, or non-binary person
  • Are 18 years or older
  • Live and receive health care in Canada

What will you be doing?

  • You have the option of completing a 20-minute survey and/or a 1-hour interview about your reproductive health and the health care services you received since the beginning of the COVID-19 pandemic.
  • You can do the study, or not do the study. The choice you make will not impact the services you use now or later.

How will it work?

  • The survey can be done by you online, by telephone or Zoom with a researcher at a time that works for you.
  • The interview can also be done by telephone or Zoom.
  • You are welcome to do both the survey and the interview.
  • If you need any supports or accommodations to participate, please let us know.

What are the benefits of participating?

What you share about your reproductive health experiences during COVID-19 will help make services better for other people during and beyond the pandemic. You will receive a $15 gift card for the survey and a $40 gift card for the interview, to thank you.

Contact us Email wiresearch.utsc@utoronto.ca or call 647-601-4519. Visit our website for more information: www.utsc.utoronto.ca/projects/disabilitySRH

Notes

“Reproductive health” includes experiences related to contraception, abortion, sexually transmitted infections, cervical cancer screening, violence, pregnancy, postpartum health, and the health of your children.

“Disability” comprises a range of disabilities, including those who self-identify as disabled and/or d/Deaf. This definition is inclusive of those who have yet to receive an official diagnosis. We have chosen to be as inclusive as possible, consistent with our commitment to include those with disabilities who remain invisible and uncounted.

This study has been reviewed and approved by the University of Toronto Research Ethics Board #42194.

Researchers at the University of Toronto Scarborough have partnered with the Disabled Women’s Network (DAWN) Canada to design and run this study. This study is funded by Canadian Institutes of Health Research.