Care and the Institution

Care as Control and Containment

Ontario began building large “care” institutions in the mid-1800s. Among these were the Provincial Lunatic Asylum (now CAMH) and institutions for the “feeble-minded,” which would later become facilities such as the Huronia Regional Centre, a former institution in Orillia for individuals with developmental disabilities. Institutions were often portrayed as helping people in need. Indeed, the word “asylum” suggests a place of refuge.

To learn more about life inside one of Ontario’s largest institutions, the Huronia Regional Centre, explore this article, No human dignity: What life was like at the Huronia Regional Centre.

Early institutions—residential schools, asylums and workhouses—were undifferentiated spaces of confinement that gradually specialized by purpose, such as rehabilitation centres, development education centres, psychiatric hospitals and prisons (Ben Moshe et al. 2014). Within the walls of the asylums and institutions designed for the “feeble-minded,” experts could create an environment that exemplified the principles of a well-ordered society and thereby ‘cure’ inmates of insanity, deficiency, and deviancy. Similarly, Indian Residential Schools were rationalized as a means of ‘saving’ Indigenous children from the ‘death of their race,’ which was considered inevitable for the success of the Canadian colonial project and the building of the nation.  Eugenicist ideas encouraged the segregation of “undesirable” people in institutions to prevent them from reproducing. Part of the power of institutions lay in the authority and authority of medical and scientific experts to deem who was a good citizen, and who should be contained. By the mid-20th century, deinstitutionalization efforts emerged, yet institutional thinking persisted, merely shifting from large institutions to underfunded “community-based” settings. Several of the large institutions were repurposed for long-term care.

Deinstitutionalization

In the 1960s, disability activists began to call for deinstitutionalization. They wanted disabled people to move out of institutions and live in the community. The deinstitutionalization movement did lead to the closure of many institutions. Ontario’s last three institutions for people with developmental disabilities, including the Huronia Regional Centre, closed in 2009. For more about the Huronia’s history, see the following timeline.

https://exhibits.wlu.ca/s/huronia/page/about-huronia

Institutional Thinking

Even so, “institutional thinking” or “institutional logic” persists in many systems of care. As disability advocate of Pat Worth from People First put it institutional thinking is “ is not just a place; it is the way people think” (Worth, 1988). This kind of thinking can manifest outside of physical institutions, shaping policies, bureaucracies, and interactions.

For example, the Ontario Disability Support Program (ODSP) reflects institutional thinking through its rigid processes and gatekeeping. Applicants must undergo medical verification to determine whether they are “truly” disabled and “deserving” of ODSP. This process often involves multiple assessments by healthcare professionals evaluating a person’s impairment and its impact on their life. The bureaucracy, complexity, and medical oversight involved in this process illustrate institutionalization through policy rather than place.

Institutional thinking has also contributed to transinstitutionalization, defined by the Department of Justice Canada as “the migration of a particular population from one system to another” (Department of Justice, 2006). For example, someone may be discharged from a psychiatric hospital only to end up incarcerated due to lack of support. Similarly, “community” settings like halfway houses, group homes, or assisted living environments may continue to enforce control and restriction, perpetuating institutional logics.

Some present-day healthcare institutions are even located on the sites of former institutions of control and confinement. For example, the Huronia Regional Centre has been repurposed as a long-term care facility, forcing some people to return to sites of past confinement in order to receive care.

Care beyond the clinic

Most people prefer home care to institutionalized care. It is also the least expensive option—cheaper than both hospital care and long-term care. However, there are many barriers to accessing home care. Individuals and their loved ones must navigate confusing eligibility requirements and long waitlists. According to a 2022 report by the Ontario-based home care initiative Bring Health Home, more than 15,000 people in Ontario were on waitlists for home care, and fewer than 50% of new referrals were being accepted. Applying for home care often involves multiple interactions with various healthcare services and providers, such as the referring physician, the hospital, and the home care provider (or, in some cases, multiple providers). To learn more about barriers to receiving healthcare beyond the clinic, engage with the Enabling Accessible Healthcare mini-documentary.

Care Poverty and Care Gaps

“Care poverty” and “care gaps” refer to the absence of care in certain communities. Suburban, rural, or remote areas of Ontario often lack healthcare resources, including the ability to provide 24/7 ER services. Consider the example of restricted emergency room hours in the South Grey Bruce region and recent ER and urgent care closures across Ontario, particularly in rural communities:

• Rural Ontario residents offer solutions amid emergency room closures – CBC News
• 2024 was the worst year for scheduled ER closures in Ontario – CBC News

Another example of a care gap occurs during transition periods, such as moving from employment to ODSP, or from high school into adulthood. For instance, some young adults with neurodevelopmental disabilities, including autism or Down syndrome, remain in school until age 21 in order to continue accessing services. However, once they age out of the school system, they often lose access to youth-specific supports and programming.

Community resources for adults—such as day programs or volunteer opportunities—are frequently limited. When supports do exist, they may come with long waitlists, restrictive eligibility criteria (such as IQ thresholds), or unaffordable fees. These gaps in transitional care can leave individuals and their families without the resources they need to support meaningful participation in community life.

For more on this issue, visit:
DSO Ontario: Transition Planning

Reflection Moment

How might care poverty and care gaps impact disabled and older peoples’ health and wellbeing?

What are some of the implications of care poverty and care gaps on healthcare provider practice?

A final example to consider: It’s true that fewer disabled people live in institutions today than in the past. Transinstitutionalization, care gaps, and care poverty have contributed to new forms of institutionalization for disabled people. Consider the following article about young disabled Canadians living in long-term care homes intended for the elderly:

Young people with disabilities in long-term care | Broadview Magazine

Reflection Moment

What are the health implications of this sort of living arrangement?

How might what you’ve read earlier in this module have contributed to this caring arrangement?

How might transinstitutionalization, institutional thinking, and care poverty have led to the situation described in the article?