Freeing our people

What is happening in this picture?

 

This is an old picture of Huronia. Huronia was an institution for people labelled with intellectual disabilities. The picture shows where people who lived in the institution used to sleep. The picture was taken by Mario Geo for a newspaper called the Toronto Star. 

 

What is the problem?

 

As an adult, just imagine if this was your life.

 

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

 

• You are told that you can’t have a key to your own home or have any visitors.

 

• You are forced to have surgery so that you can’t have children.

 

• You are paid only $1.26 an hour at your job for over 10 years.

 

• You are told you can’t vote because you have a disability.

 

• You are told that you can’t make your own decisions.

 

• You are told that you have "the mind of a child."

 

• You are told that you should never have been born.

 

In our country, most adults would not stand for this type of abuse and disrespect. But for people with intellectual disabilities, this type of treatment is part of their daily lives. 

 

They are forced to live in institutions and other places that keep them apart from the rest of society. They work in ‘sheltered workshops’ that pay much less than minimum wage. They live in poverty because they can’t get jobs. Even when they get social assistance, they still live in poverty because the rates are so low. They have had their ‘legal capacity’ taken away from them. 

 

Legal capacity is about the right to make decisions and have them followed. It is about being treated as a full citizen before the law. Many others think that people with intellectual disabilities can’t make their own decisions because of their disability. They are often put under the control of a substitute-decision maker. That decision maker controls their money and makes other decisions about their lives. This makes it hard for people with intellectual disabilities to fight for their rights and for equal treatment. 

 

These conditions are leftover from an earlier time in our history. We have come a long way since it was law that people with intellectual disabilities would be sterilized so they couldn’t have children. But the idea that people with intellectual disabilities are ‘lesser than’ others is still there. That idea affects the way that services and policies are made. 

 

Governments say that institutions and sheltered workshops help to protect people. But in reality, these places can put a person at risk for abuse and mistreatment. They certainly don’t help people to be included in society.

 

Even when we, as a society, say that a group of people are ‘vulnerable’ or need to be protected, it can negatively affect their rights. It can give the authorities reasons to limit a persons’ rights by saying ‘it is in their best interest.’  

 

Major organizations like People First of Canada are among those at the front of this issue. People First of Canada is the national voice for people labeled with an intellectual disability. They are leading research, whistle blowing, and directing action. In the disability community, the words nothing about us without us mean that we need to be included if we are to be part of society. 

 

People with intellectual disabilities, their families and supporters are the ones leading the changes with government. They have fought long and hard for each and every closure of an institution in this country. Although the movement to close institutions has been going on for decades, the fight is far from over. 

 

There are a lot of factors that work together to keep people with intellectual disabilities living in bad situations in our country. We have a lot of research that shows how poorly this group is doing in our society. Not enough is being done to help make conditions better for this group.

 

There is a lot of risk to having an intellectual disability and living in our country. Take a look at the following areas and how people with intellectual disabilities are affected.

Housing and homelessness   Many people with disabilities can’t get safe and affordable housing for a number of reasons.   In our country, about 45% of homeless people say they are also disabled. Within this group, there are more people with intellectual disabilities than people with other kinds of disabilities.   Over 100,000 adults with intellectual disabilities in Canada do not have secure housing and supports. Just in Ontario alone, about 10,000 people with intellectual disabilities are on a waitlist for housing support. The estimated wait time on that list is 22 years.   Violence    People with intellectual disabilities face more violence than people without disabilities. They are three times more likely to be physically assaulted. They are also over ten times more likely to be sexually assaulted.   Over 80% of women with disabilities will be the victims of sexual abuse during their lives. In this group, women and girls with intellectual disability are at a higher risk than others. Only one in five cases of sexual abuse against women with disabilities are reported to authorities.   Discrimination   People with disabilities face a lot of discrimination. They are not treated fairly or the same as people without disabilities.   In Canada, half of all discrimination cases are related to disability. Within this group, people with intellectual disabilities experience more unfair or harmful treatment than other disabled people. They are also more likely to be the victims of crime than other people.    Poverty and employment   People with intellectual disabilities are among the poorest people in Canada. They use social assistance four times as much as other disabled people. Many live below the poverty line. This means they don’t have enough money for basic needs like food, housing and medication.   People with intellectual disabilities also have a lot of barriers to getting a job. They have a very low rate of employment. In Canada, 74% of people who don’t have disabilities are working. For people with other disabilities, about 47% have jobs. But only 25% of people with intellectual disabilities have a job.    Unmet health needs   People with intellectual disabilities have some of the highest rates of mental health disability. This means they have a high need for mental health services. But as a group, they are overlooked and neglected in mental health polices and training.

 Institutionalization today

 

Many people are shocked to learn that Canada still has large institutions for people with intellectual disabilities.

 

These are not good places to live. They used to be old buildings surrounded by barbed wire fences. The doors all lock when they close. There is no freedom or privacy. There are time out rooms. Staff are trained to restrain and medicate people. These are not stories from the past. This is not a horror movie. These places still exist and operate in our country. These are not places anyone would choose to live in if they didn’t have to.

 

There are many thousands of people with intellectual disabilities in our country who have lived in institutions. They have a fear of being ‘sent back.’ There are good reasons for that fear.

 

Right now in our country there are about 900 people with intellectual disabilities living in large institutions. These institutions have 100 beds or more. They are located in the Prairie Provinces (Manitoba, Saskatchewan and Alberta).

 

Why do we continue to keep people with intellectual disabilities in institutions? There is the holdover from the ideas of the past. These ideas include keeping people with intellectual disabilities apart from society. It also includes limiting their legal rights. But the main reason seems to be the common belief that some people are just ‘too disabled’ to be living in the community.

 

People First of Canada and many other national disability organizations in Canada simply don’t believe this is true. They believe that all people can live in their community when they have the right supports. They believe that no person – regardless of disability – should live in any kind of situation where they are kept apart from the community.

 

They firmly believe that all large institutions in Canada need to be closed. They believe that when institutions are kept open they are kept in use.  Even though they are called a ‘last resort,’ they will be used as a first or only resort for some people. Like when the wait lists are too long or the person is said to be ‘too disabled’ for community living.

 

There are also risks that people with intellectual disabilities will be housed in other ‘institutional settings’. These are places like group homes, regional residential centres, nursing homes, and personal care homes. They can even end up in jails, homeless shelters, or hospitals.

 

Keeping people with disabilities in hospitals when they have no medical needs is a form of institutionalization. It is also very expensive. In Ontario, it cost about $1250 a day to keep someone with no medical needs in a hospital bed.  But the average cost of supporting them in a group home in the community is much cheaper. It can range from about $60 to $850 a day.

 

The financial reasons to close institutions are easy to see. Most people think this is why provincial governments have closed institutions. It would have been much better for our society if we had closed these institutions for other reasons. We should have closed them because of the abuse and neglect that was happening to people inside institutions. 

 

To save money, the province of Ontario closed its three largest institutions in 2009. These included the Huronia, Rideau Regional and Southwestern Centres. Premier Wynne apologized to the survivors. Ten years earlier, in 1999, the Alberta government apologized to people with intellectual disabilities. This was for the forced sterilization surgery that happened to people in institutions in that province.

 

A person who lives in an institution is at an increased risk of violence. Lawsuits against provincial institutions have reported the following abusive conditions.

 

• There were high rates of sexual assault against women.

 

• People were forced to take group showers. There was no privacy.

 

• People were physically forced to do things. Sometimes electric animal prods were used on people.

 

• People were forced to have surgery they didn’t need, like getting their teeth taken out. People were also given surgery so they could not have children.

 

We have a lot of research and personal stories that show how bad institutions are for people with intellectual disabilities. But still many institutions continue to be funded in this country.

 

What happens after an institution closes is as important as the closure itself. We must have a way for survivor’s stories and the history of these places to be remembered. We must also use these lessons when we make decisions in the future.

 

Many self-advocates believe that sharing their stories helps to prevent more institutions. They also share the stories of those who didn’t make it out. They share their experiences to make sure it doesn’t happen to anyone else again.

 

The grounds of the Huronia institution in Ontario may soon be for sale. Survivors of this institution say they were horribly abused and neglected. There are also graves and people buried here. But the grounds are very big and some see it as prime real estate. The Ontario government is currently consulting the public about what should happen to Huronia and its grounds. The results of the consultation will be available in the spring of 2017.

 

One of the questions in the consultation is “Do you think Huronia is an appropriate site for cultural and/or recreational development?” This is because there is a group who would like to make Huronia into a place like the Banff Centre for Arts and Creativity in Alberta.

 

The people leading this group think that Huronia survivors should not ‘dwell’ on the history of the institution and grounds. Meanwhile, Huronia survivors think that they should be included in the future plans for the site. If these places get used for something else, they want a say in what happens. That would at least show inclusion, but that is not happening.

 

Closing institutions and bringing justice to survivors is important. It is about dignifying the memory of past wrongs. It is about understanding the violations of their rights. It is about recognizing their right to decisions making. It is also about fighting against the isolation and poverty that many people with intellectual disabilities live in today. It is about recognizing their right to a dignified standard of support. It is about preventing future harms. In the end, it is really about recognizing the humanity of people with intellectual disabilities.
 

Group homes and other roads to institutionalization

 

People First of Canada includes group homes in their definition of an institution. They define an institution in the following way. 

 

Any institution is any place in which people who have been labeled 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.

 

People First of Canada believes in closing institutions of all size and manner that inappropriately house people with intellectual disabilities. This includes big facilities with hundreds of people as well as smaller homes with only a handful of people. It also includes group homes.

 

When institutions close, many former residents end up living in group homes. Every province and territory has group homes but we don’t know how many people are living in them. And we don’t know how much money goes into group homes or the systems that keep them running.

 

Here are some things that we do know.

 

• About 30,000 adults with intellectual disabilities live in large care facilities and group homes.

 

• About 10,000 adults with intellectual disabilities who are under 65 are forced to live in places like hospitals and nursing homes that are meant for older people. They have to live in these places because there are no other options.

 

The way the group homes are operated is often very similar to how the institution worked. Many times, the same staff who worked in the institution are now working in the group homes. Sometimes group homes are called ‘mini-institutions’ because they are so much alike. For the organizations that run these mini-institutions, it is a business.

 

Group homes are often thought to be a form of community inclusion. The agencies who provide this service say that they are, but the reality is that they are not. They are usually just another form of institutionalization. People don’t have the choice of where and with whom they live in these places. Residents don’t get any choice in their daily life. They rarely have the opportunity to learn about self-advocacy or join groups they might be interested in. Life revolves around the staff and the business of running the group home.

 

There can be high staff turnover due to low pay for support workers. This means that staff don’t stay there long because they pay is bad. They quit and new workers have to come in their place. The low wages and lack of training for support staff shows there is not much value seen in the work. This needs to change. Staff need training and decent wages because support work is important.

 

Group homes and other large residential care facilities can be very dangerous to people with intellectual disabilities. In fact, they can be dangerous to almost anyone. Local and national news have too many stories about neglect, abuse, assault, and even murder in nursing homes across Canada. The same things happen in group homes and other care facilities for people with intellectual disabilities.

 

When support staff call police because they feel threatened, it usually doesn’t work out well for the person with the disability. People get hurt and die in group homes. Research in 2009 showed that in Ontario over the years, there had been 53 people who died in group homes.

 

There have been recent examples of people in group homes being tasered, shot, and killed by police. Some of these people were non-verbal. Some also had other factors that make them more likely to be victims of violence. This includes being Indigenous or Black.

 

Here are some examples of people with disabilities who have been hurt or killed by police:

 

• In 2009, Douglas Minty was shot and killed by police. He lived in Elmvale, Ontario.

 

• In 2010, Aron Firman died in a group home after being tasered by police. He lived in Collingwood, Ontario.

 

• In 2016, Abdirahman Abdi was killed by police. He lived in Ottawa. He was Black, Somali, and Muslim.

 

• In 2016, Marlon Bailey-Lee was tasered by police in a group home in Brampton, Ontario. Mr. Bailey-Lee is non-verbal and is Black. Police were called because he got into an argument with staff at the group home.

 

 
People who live in group homes can also be charged with assault by their support staff. This can put them in the justice system. It can be very difficult to get the person out of the justice system.

 

A recent case in Nova Scotia took seven years to resolve. The woman was charged with assault. The staff said she tried to bite them, along with throwing a shoe and a foam letter. People First of Canada was among those who protested her charges and treatment. When people with intellectual disabilities are made criminals by the systems that are supposed to support them, there is obviously a problem with the system.
 

 

Sheltered workshops offer extremely low wages

 

Sheltered workshops are places where only people with disabilities are employed. They are paid much less than minimum wage. The pay can be as little as $1.26 per hour. The idea behind sheltered workshops was to give ‘training wages’ to people with disabilities who couldn’t find other work. They were called ‘social participation’ or ‘skills development’ to fit into the policies that allowed the low pay.

 

Recent research shows that the number of people with intellectual disabilities in sheltered workshop may be going down. But we’re not really sure. It’s hard to get exact numbers on how many people with disabilities are working in these sheltered workshops throughout the country.

 

Some numbers come from the newspaper the Toronto Star. In November 2015, they looked for information about sheltered workshops in Ontario. They asked the Ontario Ministry of Community and Social Services. The Ministry did not have much information.

 

The Ministry had sent out a survey, but less than half the agencies who provide sheltered workshops responded. From that survey, it was reported that about 3500 people with disabilities were working in 52 sheltered workshops throughout the province.

 

Since those articles came out, the Ontario Ministry has announced that it will close its sheltered workshops forever. This has probably decreased the number of people with disabilities in sheltered workshops in that province, but there are no real numbers to back it up. In other provinces, many of these workshops will still keep going because of the title ‘training program.’

 

People First of Canada believes all sheltered workshops must be shut down. They believe in ‘real work for real pay.’ They believe people with intellectual disabilities should be able to earn a living being employed in the regular job market. Furthermore, employers must be open to hiring people with disabilities. Job accommodations and supports need to be provided. Pay and benefits need to be equal to those of people without disabilities.

 

When will we do better?

 

People First of Canada believes that people with intellectual disabilities have the right to choose where and with whom they will live. A popular and reasonable option to group homes and institutions is direct funding. Direct funding is based on the needs of the person and is a more respectful process.

 

Direct funding links the funding to the individual and not to an agency or a region. There are also supports for managing the funds. This gives greater choice and control to the individual and their family. Using direct funding, people can decide where they live and are not forced to choose an available bed in an agency.

 

From institutions to the smallest group home, there is a business industry around providing housing services for people with disabilities. There are a lot of agencies and companies involved who provide different services. There is a lot of administration and funding needed to keep this system going even though it is not working well for people.  

 

When we close institutions, we need to make sure we don’t make new ones. Or bring the habits of the old one with us. This just leads to new forms of institutionalization. We need to recognize the institutional patterns in housing supports and work to replace them. We need to avoid past mistakes. We need the voice of people with intellectual disabilities when we make policy around housing supports.

 

This article is a snapshot of how things are for people with intellectual disabilities in our country. It shows that people with intellectual disabilities don’t enjoy the same rights and access as other people, even within the disability community. People with intellectual disabilities face major social issues. As a group, they often have the worst rates of poverty, unemployment, homelessness and sexual violence. They continue to be viewed as ‘less than.’ In general society and even among disabled people, they are truly the ‘left behind of the left behind.’

 

Even when there are advances being made for people with disabilities in general, it doesn’t always include people with intellectual disabilities. For example, people like Peter Singer, a public intellectual, has some very offensive views of people with intellectual disabilities.

 

Over the years he has compared people with intellectual disabilities to animals. He thinks it is ‘okay’ to murder people with intellectual disabilities.

 

More recently, he has made statements about an alleged victim in a rape case. Because that person had an intellectual disability, he said that they couldn’t consent anyway. He also said they were not ‘intelligent’ enough to understand that they had been raped in the first place. This type of statement does not support the rights of people with intellectual disabilities.

 

And it’s not only people like Singer. The use of the ‘r-word’ is not challenged much outside of the disability community. Many of our own governments fund segregated and harmful supports. ‘Out of sight and out of mind’ has hidden many disturbing facts about the treatment of people with intellectual disabilities from the public for far too long. 

 

We can no longer say that we don’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.

 

Who wrote this article? 

Natalie Spagnuolo is a university student. She is working on her PhD. She is also part of a national disability group called the Council of Canadians with Disabilities. 

 

Kory Earle is President of People First of Canada. Kory is also part of the Council of Canadians with Disabilities.