Megan Linton (Sociology) the Tracing COVID-19 Data project’s critical disabilities studies expert supported by Kit Chokly (Communications) our data intersectionality expert and designer, have been leading the charge on making public the data invisility of people living in custodial institutions. The backgrounder is available here, and in essence we are trying to compile, with disability and open data advocates across the country, a foundational dataset so that these folks can be seen in policy and in action.
Megan, in addition to being an up-and-coming scholar, is also a person with the lived experience of a disabled person has been in the news talking about these invisibilities. Today she was interviewed by CBC’s Alan Neal on All in a Day
Article written by: Megan Linton, with support from Kit Chokly and Tracey P. Lauriault
There is no national nor provincial dataset / inventory of residential service homes, congregate institutions or custodial housing for disabled people in Canada.
The last count, conducted in 2009, of people living in Ontario domiciliary hostels was 4 700.
Residents in these homes cannot meet the 2 meter physical distance requirements as their shared rooms and spaces are too small
People who live in residential service homes share bedrooms and bathrooms, placing residents in the highest risk category of a COVID-19 outbreak.
Adults with intellectual disabilities are more likely to die or experience serious complications from COVID-19 as compared to the rest of the population, in England Disabled people account for 6 in 10 COVID-19 deaths (BBC, Feb. 11, 2021)
Residential service homes are congregate institutions that provide long-term housing to chronically unhoused, older and/or disabled adults over the age of 18. These are institutions, large and small, and based on our preliminary analysis, that serve between 10 and 150 residents. People living in these residences share bathrooms, bedrooms, common spaces and dining rooms. Residential service home standards require that there be at least 0.94 meter spacing between beds in shared bedrooms, 1.39 meters of space in common areas for each resident, and at least one accessible bathroom per institution (City of Ottawa, 2016). In these residences it is not possible to meet the COVID-19 public health recommendations of a minimum of 2 meters between individuals (Public Health Ontario, 2021).
Under these living conditions it is difficult to control the spread of COVID-19. The recent outbreak at the Edgewood Care Centre in Ottawa is evidence of this. It is a 130 person privately operated institution, where 27% of residents contracted COVID-19 (Linton, 2021; Payne, 2021). These living conditions are unknown to most and are not accounted for as there are no concerted efforts to trace these outbreaks as there is no administration tasked with collecting these data in Canada as the responsibility for these falls under many jurisdictions. There are emerging data collection efforts in the UK and US that have identified that adults with intellectual disabilities are significantly more likely  to die from COVID-19 if they get the disease and the larger the size of the institution, the higher the mortality rate (Public Health England, 2020).
As of 2017, the wait list also known as the Service Registry for residential services for adults with intellectual/developmental disabilities (I/DD), was 15 700 persons (Developmental Services Housing Task Force, 2017). As a result, adults with I/DD are dispersed across a wide-range of congregate institutions, including residential service homes (Hwang et al., 2009), long term care institutions (Ouellette-Kuntz et al., 2017), and psychiatric institutions (Dube, 2016). There has yet to be the collection of disaggregated data on the impacts of COVID-19 on adults with I/DD in Canada (Campanella et al., 2021).
The last count – done in 2009 – was 4 700 people living in domiciliary hostels in Ontario
Residential service homes were initially designed for older adults who did not require the same services of long-term care institutions. The most recent analysis was done in 2009—prior to the closure of provincially operated residential institutions for adults with I/DD. Since then, the waiting list for access to residential services for disabled adults has had significant growth (Auditor General, 2014; Auditor General, 2016). In Hwang’s 2009 study, 75% of residents are under 65, 89% have at least one physical disability, 23% have a I/DD diagnosis and 94% are disabled  (Hwang et al., 2009).
Where are the data?
Presently, public health units are not reporting disaggregated data on disability-based congregate institutions, making it difficult to understand the effects of COVID-19. This statistical dearth presents a challenge as we approach an anticipated third-wave in Ontario (Ontario COVID-19 Science Advisory Table, 2021). Further, as Ontario enters phase II of vaccination distribution which identifies congregate institutions as priorities for vaccination, yet there are no comprehensive national or provincial or municipal databases of congregate institutions. These data invisibilities make it difficult to prioritize care and the rollout of the vaccine where there is a high risk of the spread of COVID-19.
Most residential service homes are regulated by the municipalities in Ontario, and there is no administrative requirement to maintain a central database of these institutions. Further, services and support for adults with I/DD are inter-jurisdictional and inter-ministerial resulting in a significant, ongoing data gap (Lunsky et al., 2013; Dube, 2016). This gap is furthered by the exclusion of residential institutions from the Statistics Canada Census (Durbin et al., 2019, Migdal, 2018).
Public health data show the greater likelihood of COVID-19 mortality in large congregate institutions. Residential service homes should therefore be a priority in receiving the COVID-19 vaccination.
Priority should be given to the residents living in these institutions based on the following criteria:
The size of the institution;
Residents share small bedrooms;
The ratio of residents per washroom is high
The age of residents and
The presence of comorbidities
The Auditor General of Ontario and the Ontario Ombudsman have made the recommendation to collect these data on several occasions (1988; 2014; 2016), and while we wait, people’s living conditions remain unseen, uncounted, invisible and therefore unaccounted for in public health policy.
People living in these types of residence should be prioritized for vaccination as should those who assist them, we need to know where these residences are and how many people live in them.
Efforts as part of the Tracing-COVID-19 Data project are ongoing to produce and open dataset we are calling Megan’s Database of Canadian Custodial Institutions for Disabled People. This is but a start, and we call upon governments federal, provincial/territorial and municipal to help with this endeavour.
 Research from the UK identifies that adults with developmental disabilities are four to six times more likely to die from COVID-19 than other individuals (Public Health England, 2020). Research from the US found they were three times as likely to die from COVID-19 (FAIR Health, 2020).
 As 94% of residents receive Ontario Disability Support Program funding (Hwang et al., 2009).
The pandemic has revealed that foundational datasets about specific Canadian populations are missing, including data on the number of disabled people currently living in custodial institutions and the state of their living conditions. This briefing was produced by Megan Linton as part of her ongoing research on disability and institutionalization in Canada, and the current data research is being conducted as part of the Tracing COVID-19 Data Project at Carleton University.
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