by Gord Kyle

Note: In the last article in this series, we looked back at the work done by community living to close the government operated institutions. In this article we will look at the work we continue to do to unravel the harm that institutional systems and thinking have done and continue to do to people who have an intellectual disability.

April 1, 2009, was a glorious day for the community living movement. People gathered in communities across the province and in a candlelight celebration on the lawn of Queen’s Park in Toronto to remember the more than fifty thousand people who had been sent away from their homes and communities to government run institutions. Many had never returned, having lived out their lives in those places including many buried in unmarked graves at the Huronia Regional Centre. The institutions had existed for more than one hundred thirty years, and it had taken the movement more than fifty years of hard work and advocacy to create the community infrastructure needed to close them. Twenty-four hours earlier, the last person walked away and the doors to the Huronia Regional Centre were locked forever. For many movements, the celebration would mark the end. It would signal a time to relax or move on to other issues, but we knew better. While the government facilities were now closed, institutional thinking and its dangers had not yet been eradicated.

We understood that the roots of institutions run deep, even within our own movement. In its early days, community living actively lobbied government to build institutions and our advocacy contributed to the expansion of government operated schedule I facilities that eventually numbered 16, housing more than 10,000 people across the province at the time they began to close in the ’70s. In the 1960s, our movement came to understand that the institutions could never be reformed to ensure a reasonable quality of life for residents. Increasingly we knew that they would always serve to harm, segregate, and separate people from their homes and communities. An alternative approach was needed. And so, in the mid-’60s we successfully lobbied for the establishment of legislation that would fund the creation of community-based housing for people. Unfortunately, our movement had no model for such housing other than the institutions and so we set out to build, not a different model of support, but what we thought would be an improved institution model that would fix the problems experienced by the government facilities.

I live in the town of Aurora, which lies along Yonge Street an hour north of downtown Toronto. If you travel about five kilometers south from my home you come to the corner of Yonge Street and Bloomington Road, on the northwest corner of which was located one of the government institutions – Pine Ridge, which closed in the mid-’80s. If you travel about five kilometers north from my home, you come to the corner of Yonge Street and Mulock Drive, on the northwest corner of which was once the first community residence built by what is today Community Living Central York in Newmarket. The similarity of the two sites is striking. Both are large, wooded properties that were, at the time of their operation, on the outskirts of town. The main difference between the two sites was the size of the residences – Pine ridge consisted of several buildings where hundreds of people lived, the community living site consisted of one massive house which was home to, I believe, about thirty people. The assumption in designing a facility that mirrored the institution in so many ways was that the real problem with Orillia and the other institutions was one of size and staffing. We believed that if we could reduce the number of people housed in one location to something that allowed more attention to be paid to each resident, and if we could maintain higher levels of qualified staff, we could rectify the problems experienced in the institutions. The Association in Newmarket was not alone in this thinking or in the design of its first residence. By the time the Homes for R——- Persons Act passed in 1966, there were seven community residences in the planning stages and 25 other associations indicating interest. The residences built throughout the late ’60s and early ’70s were designed largely on the same model as that used in Newmarket. Residences of between fifteen and thirty-five people were common and were considered small at the time – and they were, when set beside the much larger government operated facilities. These new “smaller” facilities failed, however, to rectify the problems that had plagued institutions. These congregated settings built on the outskirts of communities helped perpetuate the perception that people who had an intellectual disability were different than other citizens and needed to remain apart from society. It did not take long for our movement to realize that this approach was not going to achieve our goals of community inclusion and more fundamental change was needed. We began to understand the critical need to support people to live in environments much more like those of their fellow citizens.

In 1969, in the US, the President’s Committee on MR published Changing Patterns in Residential Services for M—— R——- People, edited by Wolf Wolfensberger and Robert B. Kugel. In the document, Bengt Nirje of Sweden defined for the first time the concept of normalization which would become a guiding principle for our movement. He said, normalization is “making available to people who had an intellectual disability, patterns and conditions of everyday life which are as close as possible to the norms and patterns of the mainstream of society.” This is a definition that is not far from what Victoria Glover, no doubt, intended when she wrote a letter in the Toronto Star in 1948 asking for society’s help in providing her grandson who had an intellectual disability a “normal life.”

In 1967, the national community living association (Inclusion Canada) established the National Institute on MR (today the Institute for Research and Development on Inclusion and Society – IRIS). In 1972, NIMR invited Dr. Wolfensberger to attend the institute as a visiting scholar. During that period, Dr. Wolfensberger vastly expanded on the work of Bengt Nirje, publishing the landmark book Normalization. Normalization, and Wolfensberger’s later refinement of the ideas, Social Role Valorization, provided our movement with tools for understanding the harm we cause people with disabilities through the imposition of institutional thinking and systems. Wolfensberger’s work, published by our national research institute more than fifty years ago, continues today to provide foundational principles guiding the work of community living and our partners around the globe.

During the ’70s and ’80s the large residences built by community living mostly disappeared, replaced by group homes that typically housed about four or five people. Other models began to emerge such as supported independent living where people were supported to live alone or with a roommate in their own house or apartment, and host family situations in which people receive support in a family home. The Developmental Services Act came into effect in 1974 through which the Ministry of Community and Social Services was able to fund a wide range of support approaches that provided local associations far greater flexibility in designing supports catered to individual needs. In 1976, the national community living association created ComServ. This project, which found its way to Ontario two years later, provided local associations resources for establishing more individualized approaches to community-based supports and helped us move away from our institutional past in favour of community services that supported people to live and work in more normative environments in which they would have greater control over their lives. This project led to the evolution of the idea of individualized planning and later individualized funding through which people were supported to plan and direct the supports that they received.

Increasingly, our advocacy in the late ’80s and beyond was aimed at providing highly individualized supports that would finally break the long legacy of institutional systems. The principles of individualization were applied not only to residential supports but to education, employment, recreation, and all the other areas of a person’s life. The progress we made in these various endeavors is covered in other articles in this series.

When the government undertook to create new legislation for the developmental services sector in 2008, Community Living Ontario worked hard to ensure that the new legislation build on the best parts of the Developmental Services Act that had provided significant flexibility over the years in creating a wide range of more individualized supports. We successfully advocated for a legislative framework for individualized funding (direct funding), although parts of that legislation are still in development and have not yet been fully instituted.

Over the years we have created services that support people to live more inclusive lives in the community. Our education system is far more inclusive than it once was, although we still have a long way to go to fully eliminate segregation. Our segregated sheltered workshops are gone and have largely been replaced by community employment or more inclusive community life options. And the large, congregated living arrangements operated by community living associations have been replaced by individualized residential supports or smaller group living arrangements that provide people greater control over where and with whom they live.

In 2011, the Ministry of Community and Social Servies released a study of the developmental services sector indicating that the majority (57% or 8,690 people) of those supported in residential services live in group homes. While that study is now twelve years old, there is little evidence that this number has shifted very much as a percentage. For the most part, the group living arrangements today bear no resemblance to the large residences built by our movement in the ’60s and ’70s. Group living arrangements of three to four people are far more common today and significant effort has been made to ensure that people have greater choice about where they live and with whom they share their home. Still, the debate over the appropriateness of group living continues in our movement. Many rightfully argue that most of the group living homes of today are nothing like the large community facilities of the past, nor, obviously, the government operated institutions. The houses are usually in regular neighbourhoods close to transit and community services. Others argue that many group homes are still viewed as residential service options rather than regular homes controlled by those who live in them. They point to labour disruptions where group homes are picketed by staff on the basis that the house is their place of employment. The funding model of group homes also reflects traditional approaches. These homes are views by the funders as a collection of “beds” and funding is provided on the basis that these beds remain full. Service providers make extraordinary efforts to ensure that the needs and wishes of each resident are considered in refiling vacancies. Still, it is not possible to argue that people have absolute control over where and with whom they live under such a model.

We are far from achieving our goal of an inclusive society and, even within our own associations, there is much work to do. We know that we must continue to evaluate our efforts, learn how we can improve, and make the changes that are needed. To this end, Community Living Ontario published a study in 2022 titled Innovations in Housing for People who have an Intellectual Disability that looks at nine residential support models in Ontario and elsewhere that promote independence and choice. A year earlier, we published Building a Full Life and a Home of One’s Own in the Community that is aimed at reforming developmental services in Ontario to help people establish greater control over their life choices.

Government Acknowledges the Harm of Institutions

We continue to make progress, but our work over the years to help people live normal lives in the community does not negate the serious harm that was done by the decades of institutional thinking and systems including within the 16 schedule I institutions built by our government. A few months after the last institution closed in 2009, delegates at our annual general meeting passed a resolution stating, “Community Living Ontario believes that the harms that were suffered by people who lived in institutions are deserving of public apology and restitution.” In response to this, the Association resolved to support any efforts taken by former residents of provincial institutions to pursue a healing and reconciliation process. The Association recognized that this may include seeking compensation for the harms experienced and petitioning the Government of Ontario to issue a formal public apology to all people who have an intellectual disability and their families who experienced the injustice of institutional life.

In 2010, Community Living Ontario filed an affidavit with the courts committing its support to a class action undertaken by survivors of the Huronia Regional Centre. The class action was launched by representative plaintiffs Pat Seth and Marie Slark, both former residents at Huronia Regional Centre. Marilyn and Jim Dolmage agreed to act as litigation guardians for the plaintiffs, a role in which they would support Pat and Marie to carry the case through the courts.

The case was settled in 2013, providing compensation to all surviving residents who lived in Huronia between 1945 and its permanent closure in 2009, which represented about 3,700 living survivors. The overall settlement fund was $35 million. Of this, $19 million was provided to past residents for the compensation. Funds remaining from the $35 million, excluding lawyer fees, were provided as a pot to fund community projects intended to benefit people who had an intellectual disability, including survivors of the institution.

In 2013, the government settled class action suits for the other two institutions that closed in 2009, Southwestern Regional Centre and Rideau Regional Centre and then in 2016 for 12 other Schedule I institutions that had closed prior to 2009. These later settlements were based on that of Huronia, providing equal levels of compensation.

The Huronia settlement included a commitment by the province to improve and maintain the cemetery at the now closed Huronia Regional Centre in which many of those who died at that institution over the years are buried. Huronia was the only institution that had a dedicated graveyard. Some graves at the Huronia graveyard had name markers while others had only a number and some were not marked at all. The government agreed to erect a wrought iron fence around the site and a plaque giving the history of the facility and the cemetery. They also agreed to create a registry of the names and other details of those deceased residents whose resting places could be identified.

An advocacy group calling itself Remember Every Name spearheaded the effort to ensure that the government fully identify and acknowledge everyone buried in the Huronia graveyard. The group monitored each step of the process related to establishment of an appropriate memorial site and demanded several changes and improvements as the work proceeded.

The Remember Every Name group secured funds through the class action settlement to commission a memorial monument to be placed within the Huronia graveyard. The monument was completed early in 2019 and they hoped to receive permission from the government to place it on the site in time for a Mother’s Day gathering the group held each year. As Mother’s Day approached, the government continued to ignore the group’s request for permission to erect the memorial. Finally, on the Friday before Mother’s Day, Community Living Ontario intervened on the group’s behalf and secure the permission needed. While the monument was not installed in time for the Mother’s Day event, it was finally erected and unveiled in August of 2019.

One of the elements of the Huronia settlement that brought many a great deal of satisfaction was the agreement by the government of Ontario to issue an apology to all the former residents of the facility for having confined them there, often from early childhood, far from their families and home communities, and for the many other deprivations, humiliations and abuses they experienced.

On December 9, 2013, many past residents of the institution were present in the Legislature, when Premier Wynne stood to issue the apology. Central to that apology was the message that:

In the case of Huronia, some residents suffered neglect and abuse within the very system that was meant to provide them care. We broke faith with them – with you – and by doing so, we diminished ourselves. Over a period of generations, and under various governments, too many of these men, women, children and their families were deeply harmed and continue to bear the scars and the consequences of this time. Their humanity was undermined; they were separated from their families and robbed of their potential, their comfort, safety and their dignity.

In April of 2014, Premier Wynne extended the apology to include the harm done to past residents of Rideau Regional Centre and the Southwestern Regional Centre.

The 2016, the Ontario Ombudsman issued a report titled Nowhere to Turn. In it he said:

It is now recognized that the model of institutional care for individuals with developmental disabilities, which prevailed in this province for over a century, was a failure. The Premier, on December 9, 2013, apologized for the suffering it caused, and Ontario has moved on to embrace a community-based approach for the developmental services sector, promoting social inclusion, individual choice and independence. This is a positive evolutionary policy shift. Unfortunately, despite the government’s recent efforts, there remain individuals on the margins, living with profound and complex disabilities and faced with extreme circumstances. When they reach a crisis point, service gaps often leave them and their families without any real choice, and dependent on a system unresponsive to their needs. Without significant additional reform, many uniquely vulnerable people will continue to be lost in the system and experience harm because of inadequate supports and services.

The Ombudsman’s report describes how there are still many people who have an intellectual disability that continue to experience institutionalization even after the closure of the final government operated institution in 2009. In particular, the report highlights the significant numbers of people inappropriately housed long-term in hospitals, long-term-care facilities, and justice detention facilities. In fact, more than half of the 60 recommendations of the report relate to inappropriate institutionalization.

Institutional Watchdog

Among the many resolutions that our members have passed at annual general meetings aimed at reducing the harm of institutionalization was one passed unanimously the year the last three government operated facility closed. Proposed by the late Gordon Ferguson, a tireless advocate who lived many years in institutions, it calls on Community Living Ontario to maintain a watchdog roll to identify any attempts to build new institutions. To date, there have been no proposals to build facilities similar in scale to the closed government institutions. Nevertheless, in the fourteen years since adopting the watchdog policy, Community Living Ontario has had to speak out several times to protest projects and proposals to create housing and other services designed on outdated institutional models including congregated, segregated, residences for fifty people or more. Most of the projects that we have objected to have been proposed by people or organizations not affiliated with Community Living Ontario and therefor have not been part of our long struggle to eliminate harmful institutional practices. On a few occasions, however, our own members have proposed initiatives that echo back to institutional ideas that we have worked so hard to move beyond. The conversations that have driven our movement for so long continue. As stated at the beginning of this article, the roots of institutions run deep, and we still have a long way to go to eradicate them completely.