Catherine Roy and I, as members of the Multi-Stakeholder Forum to Open Government, Government of Canada, and as Chairs and Co-chairs of the MSF commitment on Data for Results: Disability, submitted the following to the Government of Canada commitments to the international Open Government Partnership. This would be for the next Action Plan For Canada.

Catherine and I officially met with Government of Canada representatives, beyond the MSF officials, on this important commitment, on June 28, 2021. We had requested to meet, as part of the engagement process, with officials from Employment and Social Development Canada (ESDC), and the Canadian Accessibility Standards Development Organization. They unfortunately did not attend the civil society consulation. We did meet with officials from Statistics Canada; the Office of the Deputy Minister of Public Service Accessibility and the Canada Revenue Agency in addition to our usual MSF Open Government Team at the Treasury Board Secretariat of Canada.

The Civil Society Commitments we submitted and discussed, were developed in consultation with civil society disabled people’s organizations, experts and advocates with lived experience. It was the first time that such a group had been brought together to specifically discuss data about disabled people in Canada.

After the meeting, the civil society representatives met, and recommended an additional commitment and refined the 7 point Data For Results on Disability Commitment as posted below, that was presented to government. We also reached out to those who sent their regrets for their input. It was great to have these key experts, people with lived experience and disabled people civil society organizations at the table. This was no small feat given the context of the pandemic and the front line priorities these organizations and people have.

We then formally asked that these Refined Commitments be shared with government of Canada counterparts in an email. In that correspondence we offered to look at a draft, and or to discuss ideas. It is conventional to discuss draft commitments.

Unfortunately, the Government of Canada actors responsible for this commitment did not discuss their proposed commitments prior to the public consultation process, and as you can see here, the Government’s proposal does not resemble what civil society actors requested. The Government’s draft commitment does however resemble the 2021 Federal Budget announcement on disagregated data, and new additions that just came in this afternoon, are a list of work government was already doing, thus these do not consitutue new commitments. It is great that this work is beind done, but these do not address the request that was made. (see below Civil Society Commitments 1 & 2)

As per the process, we formally submitted our disapointment to the Government of Canada proposal in an email, and we did so today again, and we have submitted comments as part of the online consultation process which you can find here and I have posted images below. We hope that this part of the process works, and that our questions and comments will be responded to. You can submit comments to!

We also hope that we will be able to work together on addressing how disabled people are unseen and generally unacounted for in government statistics, government data and administrative data, let alone open data, and that when they are, they are often misclassified or overly surveyed and audited in programs and taxation as they are often identified as outliers. Also, that data will be collected about topics and issues of importance to disabled people, in the spirit of Nothing about us with out us!

We believe the Government operated with good intentions, and we hope to be able to work together to fulfill the requests from civil society and, that our commitments will become policy and that we can have meaningful dialogue to co-create open government policy as per the process.

Preamble

Data for Results: Data about People with Disabilities

MSF Civil Society actors identified a significant data deficit regarding the living conditions and well-being of people with disabilities in Canada. These historical and systemic inequities became more visible and problematic throughout COVID-19 pandemic response. Existing data are outdated, insufficient, difficult to find and do not address systemic issues.

People with disabilities are counted as part of the Employment Equity Act in terms of employment in the Federal Government, there is a new Act to ensure a barrier-free Canada, which has led to the creation of a Canadian Accessibility Standards Development Organization (CASDO), the Canadian Survey on Disability (CSD) targets people who are 15 years and over on Census day. These are to be lauded, but there remains an absence of data about the living conditions of this group of people in terms of individual residences and most especially collective dwellings which more often than not involves state support.  There is also a lack of any national understanding of how this group of people in Canada are faring and when in collective dwellings, how much freedom is afforded in terms of movement. This would be the responsibility of Statistics Canada, the CASDO, and the Public Health Agency of Canada (PHAC).

Currently there is no one statistical unit responsible for the collection of data, surveys and administrative data about people with disabilities. There is no national dataset nor a typology of collective residences and collective care facilities such as group homes, home care, and respite care. There are no unique classification systems, and the General Social Survey and the Census do not survey people with disabilities where they live, missing those who live in institutions and custodial housing.  We also know little of the employment, education, health, and economic status and wellbeing of this group of Canadians. This is a first step to knowing more, and to inform policies, programs and services. Internationally this group of people are underrepresented, invisible and unseen in Open Data priorities. We hope to also address this international Open Government and Open Data gap.

Multi-Stakeholder Forum Civil Society Commitment Requests on the topic of Open Data For Results – Disability:

Data for Results – Disability Civil Society Commitment 1:

• We would like the following 7 step Data For Results process on Disability commitment:

1. Disability Data Inventory – Conduct a cross government of Canada inventory to identify data, surveys, administrative data, program and service data, models, crowdsourcing data collection programs about disabled people, including their social and material lived experience. This would include methodological guides, data dictionaries, classification systems & taxonomies, standards, etc. as well as data owners, and how the data are used in decision making and reporting.
2. Analyze – Analyze the inventory and identify data gaps and issues with disability civil society actors and experts in and outside of government. This includes identifying risks related to automated decision making, validity of the data, assessment of proxies, bias and models of disability. Also, with great attention to the potential ramifications of data to the lives of disabled people i.e. disabled people are often audited more by the CRA as their lives do not follow traditional life courses.
3. Publish – The results of the inventory and later the analysis of the inventory on the Open Government Website and publish any data that can be made open in the open data portal with accompanying documentation. This can be a type of clearinghouse on disability, including laws, regulations, official reporting, etc.
4. Collect – Develop procedures to ameliorate existing datasets, and work with Civil Society actors and experts in and outside of government to produce and collect new data with responsible authorities, keeping in mind the risks discussed earlier.
5. Publish – New, current, and historical existing data on the Government of Canada Open Data portal and also, for those data that cannot be open data, these ought to be listed with details and a contacting authority.
6. Act – Data for Results is about informing public policy, programs and services to address inequities and the social and material conditions of disabled people, to assess impact and outcomes of regulation, to mitigate ableism and to improve data collection, dissemination and processes including impact and oversight, while also creating affirmative indicators related to participation in Canadian life and the workforce. Impact metrics will be required to monitor progress.
7. Report Results – Report policy, program and service improvements and outcomes.

Data for Results – Disability Civil Society Commitment 2:

Considering the importance of the availability of data designed according to and compatible with the systemic social model of disability to ensure the monitoring of the Convention on the Rights of Persons with Disabilities (UNCRPD) ratified by Canada, it is recommended to include the Human Rights Commission of Canada in any discussion related to the government’s commitment to open data in the area of disability. In addition, the lead Canadian organization in monitoring the CRPD with civil society partners is the British Columbia Aboriginal Network on Disability Society (BCANDS) crpd@bcands.bc.ca “

Image of the Government of Canada Response to our Initial Request and what is currently out for consultation:

Update – Wereceived notice at 14:00 YOW time, that the following was forgottent in the Government Consulation Document

My submitted comments about this oversight are as follows:

“The addition of 3.7 onward, just now on a Friday afternoon before an election, is great, but these do not constitute Open Government Commitments, as these are the usual business of Government, some of the surveys should not have been cancelled in the first place, and these were things Government had already committed to. We are glad that you are going to do them. Also they have just been added on the last days of the consultation.  In addition, some of these surveys do not sample disabled people living in collective dwellings such as domiciliary institutions, the living arrangements for many disabled people, which means it will miss many resulting in a gross under count and under representatio, especially people with developmental disabilities and potentially the elderly with disabilities who live in elder care homes, and any other disabled people relegated to prisons because of inadequate mental institutions, and others with developmental disabilities in mental institutions because of a lack of other forms of care.

We of course, continue to hope that our group of civil society actors will be consulted and an advisory board will be constituted with the people and organizations who helped shape and endorse the civil society submitted commitments.

Part of the issues identified by civil society, are these types of data gaps in existing counting systems, including a clear lack of typologies and classification systems about foundational issues such as living arrangements and dwelling types. 

Finally, as is the case with Indigenous people, there ought to be systems developed by and with disabled people as the current deficit indicators are not useful, and what of data that are meaningful to disabled people? 

Again, we are most willing to work with you.  And we hope that our call for an inventory, the analysis of the data from that inventory, and an advisory group can be set up in an official capacity so that we do this work together.  We look forward to your thoughts on this.  We have posted our observations and requests here as comments to this document and also here https://www.datalibre.ca/2021/08/13/open-data-for-results-disability/.

Also note, that the groups we worked with as part of this process, expected their contribution in terms of the development of commitments to be enough, they did not expect to have to come back to a website and also have to reiterate what they have already share with you.  Thus we did!

Again, we believe the Government has good intentions, but in the absence of dialogue with us, missed what we were proposing and why. The Open Government process involves meaningful engagement, and new commitments beyond usual government business.  I am sure we will be able to help you formulate a commitment that is new, and one that is meaningful to disabled people in Canada.”

Here’s what we know …

Earlier this month, the Megan Linton shared her research about the missing database of congregate institutions for disabled people. This data gap makes it difficult to trace COVID’s impacts on these vulnerable populations and to accurately prioritize vaccine distribution amidst the phased roll-out. Today (03/01/2021), federal and provincial COVID-19 vaccine roll outs still have yet to include disabled people. 

In the UK—where this data is disaggregated—we know disabled people make up 60% of all COVID deaths, and that disabled people with developmental disabilities are four to six times more likely to die from COVID-19. Canada needs data on where disabled people are living to prioritize them in our vaccination program.  

“…the lack of data is a major hurdle when making decisions, so a nationwide census needs to be undertaken to determine how many people with disabilities live in institutions or semi-institutions in Canada.”

Jonathan Marchand, Président, Coop ASSIST

We need your help to learn more about congregate institutions for disabled people.

On Sunday March 7th, 13:00–16:00, join the Canadian Open Data Society (CODS), GO Open Data (GOOD), and Open North together as part of the Tracing COVID-19 Data Project to “Hack the Data Gap” and make institutions for disabled adults visible. 

If you enjoy hunting for information online and know your way around a spreadsheet, we need you. Orientation and instructions will be provided (though you’ll have to provide your own coffee and donuts).

Join us this Sunday via Zoom to Hack this Data Gap… and together let’s shed light on this issue!

Please register here to participate.

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 

and authored the following article:  Ontario’s hidden institutions Facilities like ‘domiciliary hostels’ are an outdated model of custodial care that violates disabled people’s rights.

The research team is digging for information to compile into a database with the Canadian Open Data Society, GO Open Data, and Open North and several people in the disabled people’s community and volunteers at large.

A work in progress Disabled People’s Database — Invisible Institutions in Ottawa created by the team was also released.

We will have a public crowdsourcing activity on March 6 for International Open Data Day. Stay tuned!

Article written by: Megan Linton, with support from Kit Chokly and Tracey P. Lauriault

Key Facts:

• 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)

Issue: 

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 [1] 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 [2] (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). 

Recommendations:

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: 

1. The size of the institution; 
2. Residents share small bedrooms; 
3. The ratio of residents per washroom is high
4. The age of residents and 
5. 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.

[1]  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).

[2] As 94% of residents receive Ontario Disability Support Program funding (Hwang et al., 2009).

About:

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.