A forgotten high-risk setting: COVID-19 testing in Canadian group homes

The COVID-19 crisis in Canadian long-term care (LTC) homes has rightly led to widespread calls to improve testing and screening to save lives, reduce infections, and improve the quality of life of LTC residents. Data suggest vaccination campaigns have been largely successful in reducing mortality and protecting this at-risk group. However, group homes and other congregate settings for Canadians with disabilities are also high risk, but many remain unvaccinated, and this population has received less attention, policy direction, and support. As the third wave emerges in many places across Canada, there is an urgent need to protect this at-risk population.

Globally, people with disabilities have been disproportionately impacted by COVID-19. In the UK, people with disabilities died at three times the rate of the general population and made up to 60% of all COVID-19 deaths. Many people with disabilities require in-person care,live in congregate settings, are more clinically frail at younger ages, and can struggle to follow public health guidance, especially with limited support.

While we do not collect data on the health impacts of COVID-19 on people with disabilities in Canada, we have watched how outbreaks in group homes across the country have had devastating consequences. Vaccines provide some hope, but provinces and territories differ in when people with disabilities living in congregate care will be vaccinated.

Until mass vaccination is complete, enhancing testing and screening in group homes can help prevent, manage, and respond to outbreaks effectively, as well as facilitate critical family visits and other supports necessary for residents’ well-being. For instance, Delaware recently announced a COVID-19 rapid test initiative in group homes, while the UK stipulates frequent testing of group home staff and also residents as required. Some Canadian jurisdictions are piloting projects or have symptom screening in-place, but there is still a need to have stringent testing and screening programs to protect this population across Canada, particularly with new variants of concern.

While there is limited Canada-specific guidance for group homes during COVID-19, there are several steps group homes can take to enhance safety further during the pandemic. In order to provide evidence-based guidelines to facilitate testing and screening, group homes may consider adopting some of the recommendations provided in the COVID-19 Disability Advisory Group’s guidance or the recent Federal Expert Panel of Testing and Screening’s report on testing and screening in LTC. This could include daily symptoms screening, frequent rapid antigen testing (particularly in high community prevalence areas, and for residents who do not use words to communicate and may be unable to express symptoms they are experiencing), requesting testing priority for tests sent to public health labs, visitor testing programs, and disability-centered guidance for residents who test positive. A range of accessible and acceptable screening methods should be available for group home residents, with a focus on non-nasopharyngeal testing where possible (i.e. saliva or ‘swish and gargle’ methods), given more traditional alternatives may not be acceptable. Before testing is implemented, communication with residents, particularly in light of changing residents’ routines, should be done through accessible-format, easy-to-read updates. These robust, public, and accessible testing and screening policies are likely needed until there is lower community prevalence and higher vaccination rates in group homes across Canada.

If residents test positive and/or will require hospitalization, it is important to develop care plans and isolation guidance for all residents in advance. This will allow individuals to receive high-quality care and adequate support, particularly if they cannot have their usual caregivers or need assistance communicating. Further, it is important to provide basic and accessible healthcare training for all staff and caregivers supporting people who live in group homes. Everyone providing hands-on resident care should receive adequate training to perform symptom screening and care for individuals with disabilities.

Canadians with disabilities, particularly those living in group homes and other congregate settings, continue to be at high-risk from COVID-19 and most are unvaccinated. Even with increasing vaccination rates, current public health measures will be slow to dissipate and testing in these congregate settings remains critical. The impacts of prolonged isolation, disruption to regular activities, inconsistent approaches across jurisdictions, and unclear public health messaging have been acutely felt by people with disabilities in these settings. Group homes need access to testing and screening resources on-site and guidelines to not only help prevent further morbidity and mortality, but also improve the well-being of group home residents.

Sara Rotenberg is a disabled advocate and DPhil student in the Department of Primary Health Care Sciences at the University of Oxford, where she studies as a Rhodes Scholar. 

Matthew Downer is a medical student at Memorial University of Newfoundland and a DPhil student in Clinical Neurosciences at the University of Oxford, where he is currently studying as a Rhodes Scholar.

Yona Lunsky, PhD, C.Psych., is the director of the Azrieli Adult Neurodevelopmental Centre at the Centre for Addiction and Mental Health and a professor in the Department of Psychiatry at the University of Toronto and leads the Health Care Access Research and Developmental Disabilities Program (www.hcarddcovid.com/info).