Freeing our people: Updates from the long road to deinstitutionalization

July 4, 2017

This article is available in plain language here. Plain language is a style of writing preferred by many people with intellectual disabilities.

Dormitory at the Huronia Regional Centre, 1960.

Dormitory at the Huronia Regional Centre, 1960. Mario Geo/Toronto Star

Imagine.

You are told when you will go to bed, when you will eat, and what you will eat. 

You are denied a key to your own home, or to have visitors. 

You are coerced or forced into sexual sterilization, for “your own protection.”

You’re informed the hours you spent shredding paper over 10 years are just a form of “training,” and that you don’t deserve even a minimum wage for this work.

You are told how to vote, or that someone else will vote in your place because you aren’t capable of making rational decisions.

You’re told you have “the mentality of a child.” 

You are told you should never have been born.

It’s hard to imagine any adult being treated this way. But these are the insults faced every single day by people with intellectual disabilities. Under the guise of protecting them, many provinces practise intense forms of segregation that expose people with intellectual disabilities to degrading and abusive treatment.

Many are still locked away, against their will, in congregate care facilities and mega-institutions. They can be forced to toil in sheltered workshops for below minimum wage. Consequently, they end up living below the poverty line, completely reliant on punitive social assistance programs. They are set up for abuse, yet forbidden the tools, like adequate legal capacity, that would let them confront these practices and protect themselves.

While these are current and pressing issues, the situation reflects decades of systemic discrimination against people with intellectual disabilities. Today’s government-established systems have roots in the century-old eugenic panic that worried “less intelligent” people were outbreeding “smarter” segments of the population. Our laws and policies reproduce these historic fears, if under a different lexicon: vulnerability is the current euphemism for “defective” and “unwanted.”

The assumption of helplessness is a potent form of oppression that permits and justifies the removal of decision-making power. People First of Canada is part of a movement of self-advocates who, with their families and allies, are forcing governments to treat those with intellectual disabilities with respect. We have been fighting for deinstitutionalization for decades, based on the conviction, backed by extensive evidence, that social inclusion goes hand in hand with self-determination. “Nothing about us without us,” as the saying goes. 

Unfortunately, while it’s been well-known for some time that people with intellectual disabilities in Canada are also at high risk of homelessness, abuse, sexual violence, criminalization, poverty and unemployment (see box), there has been little solidarity from progressive camps. No one appears to be listening. The information and evidence remains buried as a niche topic of little concern or interest to other policy researchers and social activists. This needs to change. 

Violence 

People with intellectual disabilities—especially women and girls—are at elevated risk for sexual violence.

Approximately 83% of women with disabilities will experience sexual abuse at some point in their lives. Girls with disabilities are four times more likely to experience sexual abuse. 

Approximately 40% to 70% of girls with intellectual disabilities will be sexually victimized before the age of 18.

An estimated 20% of cases of sexual abuse against women with disabilities are ever reported to authorities.

People with intellectual disabilities are 2.9 times more likely to be physically assaulted, and 10.7 times more likely to be sexually assaulted than non-disabled people. 

Discrimination

In Canada, 50% of discrimination cases relate to disability.

34.9% of people described as having cognitive disabilities (including intellectual disabilities) reported experiencing discrimination in the past 12 months, compared to 19.4% of people with other (not cognitive) disabilities and 10.6% of people without disabilities

28.9% of people with cognitive disabilities reported being a victim of some crime, compared to 20.4% of other (not cognitive) disabled people and 17.6% of people without disabilities.

Housing and homelessness 

Among Canada’s homeless population 45% identify as disabled; within this group, intellectual disability—a proven factor putting people at risk of homelesness—is disproportionately represented.

Almost 25,000 Canadians with intellectual disabilities (15.1%) experience core housing needs, compared to 11.1% of other people with disabilities (not intellectual) and 11.1% of people without disabilities.

In Ontario alone, an estimated 10,000 people with intellectual disabilities are on a waiting list for residential support (the wait time in Ontario was recently estimated at 22 years).

An estimated 100,000 to 120,000 adults with intellectual disabilities face housing and support gaps.

Poverty and employment 

People with intellectual disabilities are among the poorest people living in Canada: 34.3% rely on social assistance, compared to 8.6% of people with other (not intellectual) disabilities.

20.6% of people with intellectual disabilities live below the low-income cut-off (LICO), compared to 12.5% of people with other disabilities and 10.3% of people without disabilities.

In 2011, the national employment rate for people with intellectual disabilities was 25.5%, compared to 47% for people with other disabilities and 74% for people without disabilities.

61.2% of people with intellectual disabilities are not in the labour force, compared to 41.9% of people with other disabilities.

Unmet health needs  

People with intellectual disabilities experience some of the highest rates of psychiatric disabilities and have a high need for mental health services. Yet they tend to be overlooked and neglected in mental health policies, training and related efforts.  

Sources: Canadian Civil Society Parallel Report for Canada, CRPD Committee (16th Session), February 27, 2017; “Meeting Canada’s Obligations to Affordable Housing and Supports for People with Disabilities to Live Independently in the Community,” submission to the Committee on the Rights of Persons with Disabilities for the 17th Session, March 2017; Unpublished data from the 2012 Canadian Survey on Disability compiled by Adele D. Furrie, Adele Furrie Consulting Inc; factsheet prepared for the Violence Prevention Initiative of the Government of Newfoundland and Labrador; Canadian Association for Community Living; Robert Blogh and Yona Lunsky, “The Invisibility of People with Developmental Disabilities,” Policy Options, April 2017; Annual report of the Office of the Auditor General of Ontario, 2014.

 

Institutionalization today

Many readers will be shocked to learn that Canada still operates large institutions for people with intellectual disabilities. Images of these places are the stuff of horror films: imposing old buildings with white walls and barbed wire fencing, and where the doors lock upon closing. Inside staff restrain residents with straitjackets, subject them to chemical injections and confine them in time-out rooms. 

But institutionalization isn’t history, it’s a thriving reality. The existence of these places poses an immediate threat to anyone labelled with an intellectual disability. About 900 people are languishing in large institutions (100 beds or more) in Manitoba, Saskatchewan and Alberta. And according to a civil society parallel report submitted to the United Nations this year by a group of Canadian disability organizations, these institutions continue to receive new admissions. 

How do we explain this reluctance to deinstitutionalize? The most frequent excuse is that some people simply cannot cope—they are just “too disabled” to join society. People First of Canada and its allies in the deinstitutionalization movement believe, to the contrary, that with the right support all people can live within their community. The problem is that even though institutional care is billed as a “last resort” it quickly becomes the first or only option, given long waiting lists for alternate supports and false perceptions that a person’s need are “too high.” As a result, people with intellectual disabilities are being housed in traditional regional centres and group homes, nursing homes, senior homes, personal care homes and other long-term care facilities. They can even end up in homeless shelters or correctional facilities.

So-called trap doors to institutionalization exist via hospitalization and other warehousing practices that “store” people with intellectual disabilities in inappropriate settings. In many cases, hospitalization constitutes a costly form of institutionalization. In Ontario the costs of warehousing someone (without health needs) in hospital is $456,250 per year, or $1,250 a day. This amount greatly exceeds the average costs of supporting someone to live in the community, which, in the case of a group home for one adult, ranges from $21,400 to $310,000.

Advocates for deinstitutionalization have used this kind of fiscal reasoning to promote institutional closures. It clearly saves money—something those provincial governments who have agreed to decommission regional centres (the mega-institutions) almost certainly considered. Admittedly, it is troubling that closures have been achieved on these grounds, rather than on firmer principles of justice, the prevention of harm, or public exposure to what was taking place behind the scenes.

Survivors from Huronia (Ontario), Woodlands (B.C.), the Michener Centre (Alberta) and other institutions for people with intellectual disabilities have taught us that institutionalization breeds person-to-person violence. Successful class action lawsuits against provincial facilities have alleged high rates of sexual violence against women with intellectual disabilities; routine degrading treatment, such as group showers; the routine use of physical force, such as electric cattle prods; medical violence, such as forced or coerced sterilizations and teeth extractions (to facilitate “care”), and countless other atrocities. 

Though Ontario Premier Kathleen Wynne apologized to survivors of such treatment in 2009, when the province shut down its three largest institutions (Huronia, Rideau Regional and Southwestern), the decision was largely a cost-saving measure. A decade earlier, Alberta issued an apology for the forced sterilizations carried out in many institutions under the notorious Sexual Sterilization Act. Yet the reproductive rights of women labelled with intellectual disabilities will be jeopardized as long as other institutions are being funded in this country.

The actions that follow institutional closures are as important as the closures themselves. Harsh survivors’ stories continue to surface; these people must be given a platform and incorporated into policy decisions. Many self-advocates work toward preventing reinstitutionalization by memorializing the shameful legacy of these places and sharing histories of survivorship, as well as the stories of those who didn’t make it out.   

The grounds of the former Huronia institution include both unmarked and numbered graves, and survivors allege violent atrocities took place there. The space is nonetheless now considered prime real estate by the government, which is looking to sell. Infrastructure Ontario consulted the public earlier this year about the future of the 175-acre site and was expected to report on the results before the end of the spring. 

One of the questions posed in Ontario’s online survey was, “Do you think the Huronia Regional Campus is an appropriate site for cultural and/or recreational development?” It relates to a controversial proposal to transform the grounds bordering Lake Simcoe into something like Alberta’s Banff Centre for Arts and Creativity. Project backers have encouraged the province to adopt a forward-looking vision, even suggesting that survivors and the public shouldn’t “dwell on the lugubrious past” of the institution. Survivors and their allies believe it would be inappropriate to build a cultural centre on the Huronia site and that those who were hurt most by the institution should be included in the plans for its future—something they insist is not taking place.

Deinstitutionalization and the struggle to bring justice to survivors is as much about dignifying the memory of past wrongs as it is combating the isolation and poverty that continues to plague members of this community. Historical memory has a large part to play in preventing future atrocities and in restoring the full humanity of this group. Part of this work aims to encourage a culture change in how people with intellectual disabilities are perceived. In other words, society must work to recognize their histories, their right to decision-making, and their entitlement to a dignified standard of support.

Group homes and other trap doors to institutionalization

There are many new and lingering forms of institutionalization, as well as trap doors that lead back to reinstitutionalization. More than ever, we need to ensure that whatever follows in the wake of institutional closures does not repeat past mistakes. Keeping control of services in the hands of people with intellectual disabilities, their families and allies, and not in the hands of the market-oriented “disability business,” is extremely important in this respect.  

Oncemajor institutions are closed, many of their former residents end up living in group homes that offer supported living arrangements. Data on exactly how many people are affected in this way is hard to come by. Group homes operate in a decentralized environment; non-profit agencies are responsible for managing both the real estate and the staffing of the home. Disturbingly, the living conditions in group homes reflect the same problems that existed—and still exist—in larger institutions. So strong are the similarities that these homes, some of them managed by the same people who previously operated institutions, have been dubbed “mini-institutions.”

Approximately 30,000 adults with intellectual disabilities live in congregate care facilities and group homes.

Approximately 10,000 adults under 65 with intellectual disabilities are forced to live in hospitals, nursing homes and similarly unsuitable long-term care environments due to a shortage of housing and support options.

Source: “Meeting Canada’s Obligations to Affordable Housing and Supports for People with Disabilities to Live Independently in the Community,” submission to the Committee on the Rights of Persons with Disabilities for the 17th Session, March 2017.

 

People First of Canada defines an institution as “any place in which people who have been labelled as having an intellectual 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.” Deinstitutionalization therefore means closing all institutions—including group homes—that inappropriately house people with intellectual disabilities. Whether an institution houses 600 people in a single building or six in a suburban bungalow is irrelevant. 

Group home providers frequently claim they help support community inclusion. But more often than not, these mini-institutions are present in the community only in a physical sense. The nature of support, the routinization of daily life and the overall lack of freedom, choice and dignity remain the same as what one would experience in a large institution. 

Residents don’t have the freedom to choose their own roommates or even the location of their home. Even fewer have opportunities to learn about self-advocacy, to reflect on their life experiences, and to share their stories with peers and the community at large. The primary concern is filling beds and working around the needs of staff. Routines are established and residents must adapt to the prescribed rhythm, regardless of whether it suits their needs or preferences.   

Consistent with the lack of available data on how many people are living in group homes, it is very difficult to ascertain how much money is spent to sustain them in any given province or territory. Partly this is because of how many different departments or agencies tend to be involved in funding decisions. Although the salaries of agency managers or directors will vary, support workers can earn lower wages than frontline food service employees. These low salaries, which often result in high turnover rates at group homes, reflect the low value that is put on the care and support of people with intellectual disabilities.

In contrast to the paucity of information about group home finances, local and national news reports are littered with stories of neglect, abuse, assault and even murder in nursing and group homes across Canada. In 2009, a stunning 53 lives were lost in Ontario group homes for people with intellectual disabilities. Some such deaths are the result of interventions by police, who are occasionally called to group homes by staff who feel threatened by residents. For example, Aron Firman died in a group home in Collingwood, Ontario after being tasered by police in 2010. In 2009, Douglas Minty, a man with an intellectual disability living in Elmvale, Ontario was shot and killed by police outside his home.

Add racial profiling by police to the mix and interactions with disabled members of the Indigenous and Black communities become even more fraught. Last summer, Abdirahman Abdi, a 37-year-old disabled Ottawa man who was Black, Somali and Muslim, died from injuries he suffered at the hands of the police (the officer was charged with manslaughter in March). Later that year in Brampton, police were called to the group home of Marlon Bailey-Lee, a 21-year-old Ontario man who is Black and who does not use verbal communication. The visit was prompted by a dispute he had with his support staff and resulted in his being repeatedly tasered.

People with intellectual disabilities are also at risk from accusations by the people assigned to look after them. Nova Scotian Amanda Murphy was arrested in 2014 after an encounter with support staff. In a similar incident in a large congregate care facility in Nova Scotia, Nichelle Benn was charged with assault after allegedly biting a staff person and throwing a shoe and foam letter. Charges against Benn were only dropped after a seven-year battle that included protests by People First members. These cases expose an uneven power struggle between residents with intellectual disabilities and a system designed to contain them. 

When will we do better? 

In place of containment in institutions and group homes, People First of Canada argues that people with intellectual disabilities have the right to exercise choice in determining their own living arrangements. A popular and very plausible alternative to the group home and congregate care system is direct funding.

When money is tied to the individual, rather than to an agency or geographical region, it provides greater choice and control, and the flexibility to tailor additional support to those who require assistance in managing their finances and in making decisions. Direct funding is more humanizing, since where a person lives is a matter of choice and not dependent on the availability of beds within agencies.

Unfortunately, the logic behind personalized support has been co-opted by a chaotic “disability industry”—a confusing mishmash of not-for-profit private businesses, case-management services, person-directed planning services and others vying for public dollars. Furthermore, missteps in managing the consequences of institutional closures are leading to new forms of institutionalization. Many people are experiencing, or are at risk of experiencing, reinstitutionalization, including those who managed to survive provincially run institutions.

Once we begin to recognize the institutional patterns that are cropping up in new support models, like group homes, we can get to work on replacing them. To avoid past mistakes—and avoid paternalism—it is essential that input from self-advocates and other people with intellectual disabilities form the basis of policy solutions. People with intellectual disabilities are reclaiming their right to speak for themselves and to redefine their lived experience on their own terms. 

But the fight for deinstitutionalization and desegregation remains an underground struggle waged by a group of people whose very humanity continues to be questioned. People with intellectual disabilities are simply not on the radar of most progressive think-tanks—even though their experiences overlap with major social issues, and despite their presence near the top of many data sets on poverty, sexual violence, homelessness, unemployment, and criminalization. They have no substantive rights in Canada. Among disabled people, they are truly the left behind of the left behind. 

As recently as the early 1990s, a period when other disabled people were making gains in the U.S. and Canada, public intellectuals like the Australian philosopher Peter Singer were comparing those with intellectual disabilities to animals to justify murdering them. Earlier this year, Singer weighed in on a disability rape case in a coauthored New York Times op-ed claiming the alleged victim was both incapable of consenting and not sufficiently “intelligent” to understand that he had even been raped in the first place. Clearly, Singer has learned nothing in over 30 years of debating and engaging with disability advocates. 

But how can we expect any better of people when the use of the “R” word is still rarely challenged outside of disability communities? How can we expect any better from society when our own government continues to fund deeply segregated, dehumanizing and dangerous forms of support for people with intellectual disabilities? Out of sight, out of mind has hidden many disturbing facts about intellectual disability from the public for far too long.

We can no longer say that we didn’t know any better. We can no longer say we can’t do any better. These wrongs must be righted and further abuse prevented. We need to bring the “left behind” forward if we are to become an inclusive and accessible country.


Natalie Spagnuolo is a PhD candidate in critical disability studies at York University and sits on the social policy committee of the Council of Canadians with Disabilities. Kory Earle is President of People First of Canada/Personnes d’abord du Canada and a member of the Council of Canadians with Disabilities’ executive committee. 

This article was published in the July/August 2017 issue of The Monitor. Click here for more or to download the whole issue.

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