What is Invisible Institutions?
Invisible Institutions is a community knowledge hub documenting the ongoing institutionalization of persons with disabilities across Canada. This project aims to build awareness about the ongoing realities of institutionalization across Canada through research, capacity building, and knowledge mobilization.
Institutionalization is the ongoing removal, isolation, and confinement of people with disabilities from their communities into small or large sites of confinement, like long-term care homes, psychiatric institutions and prisons.
We seek to make information about institutionalization accessible and public. There is a significant gap in public understanding of institutions and disabled life in Canada, because they are invisibilized. We need to make known how institutions are currently being used and operated, and highlight what is at stake for people with intellectual/developmental disabilities because of ongoing institutionalization. Central to this project is building a sustained movement against institutionalization.
We believe in freedom for persons with disabilities, which is only possible when every institution is closed and institutional logic is abolished. In solidarity with the Joint Task Force on Deinstitutionalization, we seek to put deinstitutionalization back on the national agenda.
Part of the work featured on this website was funded by the People First of Canada/Inclusion Canada Joint Task Force on Deinstitutionalization, which is a partnership between People First of Canada and Inclusion Canada.
People First of Canada (PFC) is the national voice for people who have been labeled with an intellectual or developmental disability. PFC believes in the right to freedom, choice and equality for all.
Inclusion Canada (IC) is the national federation working to advance the full inclusion and human rights of people with an intellectual disability and their families. Inclusion Canada leads the way in building an inclusive Canada by strengthening families, defending rights, and transforming communities into places where everyone belongs. The Invisible Institutions Research project is a project of the Joint Task Force on Deinstitutionalization. The Joint Task Force on Deinstitutionalization is a partnership between People First of Canada and the Canadian Association for Community Living.
This project has two primary components: research and knowledge mobilization. Our research seeks to gain insight on the conditions of institutionalization in Canada. We aim to mobilize this research to raise public awareness on institutionalization and to make institutions an election issue for all levels of government.
This project aims to produce a pan-Canadian survey of institutionalization.
We are guided by the following questions:
- How many people labelled with intellectual/developmental disabilities are institutionalized in Canada?
- What are the current forms of institutionalization in Canada?
- How many people labelled with intellectual/developmental disabilities have died in institutions during COVID-19?
This project aims to make information about institutionalization accessible to everyone. To accomplish this, we will use three primary formats:
- Invisible Institutions, the podcast. We are excited to launch the podcast to tell the stories of institutionalization in Canada. Find it on all your favourite streaming sources on December 3rd. (insert image)
- Policy Briefs. Policy analysis and recommendations regarding centering the experiences of people labelled with intellectual/developmental disabilities living in residential institutions. Centering the experiences of people labelled with intellectual/developmental disabilities.
- Follow us on instagram @invisibleinstitutions for plain language shareables and article summaries.
What is an institution?
“An institution is any place in which people who have been labeled as having an intellectual, developmental or psychiatric disability are isolated, segregated and/or congregated. An institution is any place in which people do not have, or are not allowed to exercise, control over their lives and their day to day decisions. An institution is not defined merely by its size.”
Didn’t deinstitutionalization already happen?
COVID-19 has made apparent that institutionalization is an ongoing reality for too many people with disabilities. While many of the large-scale institutions closed throughout the 2000s, new and old forms of institutionalization have remained.
The deinstitutionalization movement that began in the 1970s helped bring about massive changes, demonstrating that closing institutions is possible. Unfortunately, governments used deinstitutionalization to prioritize budget cuts, instead of prioritizing community living. This resulted in the creation and maintenance of smaller, often privatized institutions which we see across the country today.
So what are institutions that still exist today?
Long-Term Care Homes
Long-term care homes, or nursing homes are larger institutions designed for disabled, older adults who require higher levels of support. Across Canada, disabled people of all ages are institutionalized in long-term care homes despite their intended use for older adults. There has not been a national survey on the use of long-term care homes for disabled people. Provincially, we know that in Ontario at least 3,200 disabled people under the age of 55 live in long-term care.
Across Canada, disabled people have taken action against the use of long-term care homes to demand deinstitutionalization. In Quebec in 2020, Jonathan Marchand locked himself in a cage outside the National Assembly to demand access to community living. He explained “I’m not just doing this for myself, my goal is to open the cage door by creating a precedent,” he explained. “Our freedom cannot wait any longer.”
In 2018, Tyson Sylvester locked himself in a cage in Winnipeg to protest his ongoing confinement in a long term care facility. He explained, “I feel locked out of life because, frankly, you cannot access any services and you are denied community living disability services.”
Group homes are segregated congregate settings that typically have capacity for between 3-50 people labelled with intellectual and/or developmental disability/ies (I/DD). Group homes grew in popularity and availability in the 1970s as a response to and alternative to deinstitutionalization, and were intended for community living. However, group homes today maintain many of the forms of institutionalization they were supposed to address and improve upon.
Group homes, no matter their size, are institutions. They limit people with disabilities access to privacy through shared rooms, high rates of staff, and security systems. Workers in group homes are typically given the authority to use physical and chemical restraints, and solitary confinement against disabled people – these are methods of control that limit the freedom, autonomy and safety of people with disabilities.
Group homes exist across Canada and are typically regulated by the province or territory. Each province has their own legislation.
Domiciliary hostels—also called residential service homes and housing with supports—are municipally regulated institutions. They are run privately and for profit. However, they also receive subsidies from provincial and municipal governments.
Domiciliary hostels segregate people with disabilities from their community, and are often located outside of major urban centres. Disabled people live without privacy in rooms shared with three people, adhere to set meal times, and receive a meager $149-per-month “personal needs allowance”.
More than 8,000 people live in the 325 domiciliary hostels in Ontario. This count excludes Toronto, which has an additional 223 institutions.