by Gord Kyle
For most people, highway 400 was a marvel. Travellers remembered all too well what it had been like before it was built, crawling their way out of Toronto to cottage country through the endless towns and villages along the winding stretches of Yonge Street. But 400 changed that. As the first controlled highway in the province, it provided a quick escape from the city — so long as there were no accidents and the road was not blocked by snow or water, as it had been back in 1954 when Hurricane Hazel submerged the Holland Marsh. Betty Anglin and her husband Jerry had used the new highway more than most in the eight years since it was built. They drove it every Sunday, heading from their home in Toronto to visit Mark, their son who lived at the Ontario Hospital School (later the Huronia Regional Centre). Their visits to the old institution on the shores of Lake Simcoe in Orillia never failed to crush Betty’s spirit. She thought little about the marvels of the new highway – throughout her long life, she would refer to it as the highway of sorrow when she remembered where it carried her and recalled the deep pain she felt seeing her son living in the crumbling ancient asylum.
If there had been options available, other ways Mark could get the support he needed, perhaps they would have made other choices for him. But for now, little community support was available for their twelve year old son. Government funding was directed almost exclusively at the institution. Fortunately, things were beginning to change. The local association in Toronto of which the Anglin’s were members had formed a decade earlier and had established a school for children who had an intellectual disability. And recently, a sheltered workshop was opened that perhaps Mark could attend when he was an adult. But the institution remained the primary place where help was available to parents seeking support for their sons and daughters. Unfortunately, the institution had been in a perpetual state of crisis and decay since it opened back in 1876, overcrowded and underfunded, with little effort being made by government to improve conditions. In recent years new institutions had emerged throughout the province and, while the buildings were newer and less in need of repair, they provided no better quality of life for residents than their predecessor. The Anglin’s were determined to change this — to force government to address the deep and growing problems at Orillia and elsewhere. To that end, Jerry had volunteered to chair the institutions committee for the provincial association (Community Living Ontario) and with his fellow members was advocating for reform.
Providing support to people with disabilities in the community as an alternative to the institutions was an aim of the community living movement from the beginning. In her 1948 letter to the Toronto Star described in article one of this series, Victory Glover asked, why, if government was willing to fund the institution, similar funding could not be provided in the community to help her grandson remain “at home living a normal life.” But in its early years, the association did not oppose institutions – the aim was to build community services while fixing the countless problems that had always existed at Orillia. Throughout the 1950s, the association, in fact, advocated for the creation of more institutions. In 1957, it submitted a brief to the Minister of Health requesting that a 200 to 300 bed institution be opened near a university to promote diagnostic assessment and research into intellectual disability. As well, the Association appealed to the government to open an institution in the Niagara area to address the ever increasing demands for support. In response, the Minister of Health outlined plans to open institutions for 1,000 residents in Niagara and Toronto, although these were never built. Additionally, the Association, working in cooperation with the University of Western Ontario and the Department of Health convinced the government to establish the Children’s Psychiatric Research Institute (CPRI) in London in 1959. That facility continues to operate today as the Child and Parent Resource Institute, though it was delisted in 2011 as a residential facility and today offers only outpatient services.
But as the 1960s arrived, the association’s advocacy objectives were about to change dramatically. It was mid-day, New Years Eve, 1959 as Jerry and Betty once again made their way up the highway to Orillia. Their son was with them for this trip, on his way back to the Hospital School after a Christmas visit with his family. Mark, sitting in the back seat anxiously anticipating his return to the institution, grew sick and vomited. Betty cleaned away the mess while in the front seat Jerry drove, continuing to describe to their guest the conditions at the facility. Their guest, the renowned journalist, Pierre Berton, had been hearing rumours about the poor conditions at the institution for some time and was determined to investigate. Knowing that he would likely not be well received if he just showed up and asked the staff at the facility for a tour, he reached out to Jerry as the chair of the association’s institutions committee to accompany him and show him what life at Orillia was like for their son. The strategy worked. When they arrived, Berton got to see even the oldest and most run down areas of the institution. He was horrified by what he found and the story he wrote about his visit shook the institutional model to its core. On January 7, 1960, Berton published a column in the Toronto Star titled “What’s Wrong at Orillia: Out of Sight, Out of Mind.” His description of the conditions he witnessed was horrific:
It is distressing to visit these older buildings, as I did last week. The thought of fire makes the hair rise on your neck… the beds are crammed together, head to head, sometimes less than a foot apart. I counted 90 in a room designed for 70…the stench here is appalling, even in winter… the floors are scrubbed as often as three times a day by an overworked staff but, since they are wooden and absorbent, no amount of cleansing will remove the odors of 70 years…on one floor there is one wash basin to serve 64 persons. On another floor, where the patients sometimes must be bathed twice or three times a day, there is one bathtub for 144 persons.
Berton closed the article with an extraordinary reference to Nazi Germany stating:
Remember this: After Hitler fell, and the horrors of the slave camps were exposed, many Germans excused themselves because they said they did not know what went on behind those walls; no one had told them. Well, you have been told about Orillia.
The government’s first reaction to the article was not to address the problems at Orillia but to gloss over them. Later that year, the Department of Health released a film titled One on Every Street in a weak attempt to paint a picture of the wonderful life people experienced in the institution – an account in stark contrast to Berton’s. The film showed happy well-dressed young people attending school, working, and going to parties and other activities. The attempt at sanitizing Orillia was not enough however, and changes were on the horizon.
The advocacy aims of Community Living changed. It called on the government to modify its plans for the creation of the Cedar Springs institution in southwest Ontario. The government plan was to duplicate the facility built in Smith’s Falls in 1951 (Rideau Regional Centre). As a result of the association’s advocacy, the plan to create another 2,400 bed facility was set aside and a “smaller” 1,000 bed institution opened in 1961. This marked the beginning of the association’s efforts to have government reduce the size of institutions in the province and ensure higher staff ratios which, it was assumed would result in an improved quality of care.
The focus on building community alternatives grew throughout the ’60s as local associations increased their efforts to create services. In 1964, the provincial association’s membership voted to undertake a multi-million dollar initiative to build numerous services in and around Niagara and Hamilton. The Hamilton-Niagara Project was designed to demonstrate the value of having a complete range of community services available to people and families within a 100 mile radius. The association successfully advocated for the establishment of the Homes for R—— Persons Act in 1966, providing the foundation for the funding used to create most of the early community residential options in the developmental services sector. By the time the act passed, there were seven community residences in the planning stages across the province and 25 other local associations indicating interest. Funding for sheltered workshops also increased in 1966 with the establishment of the Vocational Rehabilitation Services Act. In 1967 the Ministry of Education established education authorities to administer the local schools started by community living in the 50s, beginning the long process of change that would eventually shift education for children who had an intellectual disability into the mainstream system. In 1968, provisions of the Homes for Special Care Program were extended to people who had an intellectual disability to support people leaving institutions.
By the beginning of the 1970s, given the substantial growth of community supports, attitudes had changed significantly regarding the appropriateness of and need for large, congregated institutions. In 1972, Dr. Wolf Wolfensberger, while a visiting scholar at the association’s national research institute in Toronto, published his landmark book Normalization. Wolfensberger’s concept of normalization, and later social role valorization, continues today to provide foundational principles guiding the work of Community Living and its partner associations around the world. As the ideas of normalization/social role valorization began to take hold, the understanding grew that congregated institutions could never be reformed and would always be vehicles for isolation and harm. This conclusion was starkly reinforced in government reports written about the institutions including Walter Williston’s report about the death of two men from Rideau Regional Centre in 1971; Robert Welch’s report of 1973 that called for the movement of people from institutions into the community; and Dr. Joseph Willard’s report of 1976 investigating several tragic deaths at Huronia Regional Centre. By the mid ’70s, the government operated sixteen institutions. The total population of the institutions had grown to about 10,000 people. But the writing was on the wall, and support for the creation and maintenance of institutions was diminishing.
Local associations of community living had created community supports throughout the province including services for education, housing, employment, recreation, childcare and many other things. The government recognized that a new mechanism was needed to coordinate and fund such a range of services. In 1974, The Developmental Services Act came into effect, transferring responsibility for the operation of the institutions from the Ministry of Health to the Ministry of Community and Social Services. More importantly, the act established the Developmental Services Branch, which, in addition to operating the institutions, was given responsibility for facilitating the funding and operation of community based services. With a funding framework now in place for community based services, community living concluded there was no longer any argument for the continuation of the institutions. The association advocated to stop the development of new institutions and to begin systematically closing those that existed. In 1975, the Association spoke out against plans by government to open new institutions of 150 people each in Timmins, Goderich and near Sudbury. Again in 1977, the association protested plans by the Ministry of Community and Social Services to build a 150 bed facility in Etobicoke.
The Association convened a public meeting to explore alternatives to institutions resulting in a proposal to government to alter its plans and build one 30 bed specialized residence and a network of small community residences for approximately 100 people. The Ministry accepted and implemented the recommendation and in that same year implemented the first multi-year strategy to close an institution and begin downsizing others. The Nipissing Regional Centre in North Bay was the first to close in 1978. In 1982, the government announced the second multi-year closure plan aimed at closing five of the smaller institutions in a five-year period. The institutions that closed were the Pine Ridge Centre in Aurora, Bluewater Centre in Goderich, St. Thomas Adult Rehabilitation and Training Centre (S.T.A.R.T.) in St. Thomas, and the St. Lawrence Regional Centre in Brockville.
Community Living studied the outcomes of the closures to learn from the experience and as the 1982 five-year plan drew towards its end, it struck a task force to propose appropriate alternatives to institutions. That group finalized its report in May of 1987 calling on government to implement a strategy to close the remaining institutions and replace them with community based supports. The government listened and in an address to the association at its annual conference in the fall of 87, Minister John Sweeney introduced Challenges and Opportunities – a strategy for developing a comprehensive system of supports and services in the province aimed at eliminating once and for all the need for institutions. That policy document also established the government’s commitment to close all the remaining government operated institutions for people who had an intellectual disability within 25 years. The initial stage of that plan called for the closure of five more institutions: Durham Centre in Whitby, Muskoka Centre in Gravenhurst, Northwestern Regional Centre in Thunder Bay, D’Arcy Place in Cobourg, and Oxford Regional Centre.
The closure of the five institutions announced in 1987 took a full ten years to complete, double the time it took to close the previous five facilities. During that time the government changed twice, meaning that all three of the main political parties (Liberal, NDP and Progressive Conservative) were in power at Queen’s Park during that closure. Community living worked diligently through that period to encourage each subsequent government to stick to the closure plan. In 1996, as the closure plan established by John Sweeny finally drew towards its end, approximately 2,000 people still lived in the remaining three facilities. Community Living Ontario presented to the new Progressive Conservative government a document titled No Better Time than Now – Saying Farwell to Institutions. The document called for the rapid closure of remaining institutions, stressing the value of supporting people to live in the community. Community Living Ontario proposed a much accelerated agenda for closure through a realignment of resources from the remaining institutions into investments in the community. The government did not fully accept these aggressive timelines, but shortly after the release of this document, it announced an accelerated three-year plan to move almost 1,000 people from institutions closing or downsizing most of the remaining facilities. Under that plan, three institutions closed: Midwestern Regional Centre, the Adult Occupational Centre, known commonly by its location, Edgar, and Prince Edward Heights which closed in 1999.
After three years of significant movement towards closure of the final institutions, progress stopped. In 2000, with no sign of action by government to introduce the next multi-year plan, Community Living Ontario reached out to local associations and members in the three areas where institutions still existed to renew its advocacy efforts. The collective effort was significant but failed to convince the Progressive Conservative government to introduce its second multi-year initiative.
In 2003, the government changed again, this time to Liberal. In that year, Community Living Ontario hosted a provincial forum called Free the People to develop strategies for getting the government to act on the closure of the final three institutions. In the spring of 2004, Community Living Ontario circulated a petition calling on the government to restart the closure process. More than twenty-five hundred people signed the petition which was presented in the Legislature in March by MPP Michael Gravelle. Mr. Gravelle had a brother who was supported by the local community living Association in Thunder Bay. Later that year, the Ministry finally initiated a new provincial strategy – announcing a five-year plan to close the final three institutions by 2009 – three years ahead of the schedule called for in 1987 by then Minister Sweeney.
While those in the Community Living movement were elated, the reaction to the final closure announcement was not universally applauded. Unions of workers in the institutions and some families of people living in the institutions organized to try and stop the closures. In 2006, parents of residents of the Rideau Regional Centre and Huronia Regional Centre launched a court challenge against the closure of the final institutions. These parents argued that those who had not yet moved to the community were those with the most severe disabilities – which they stated was why alternative community placements had not been attempted to date. They argued that their sons and daughters were incapable of being supported in the community and would be placed at great risk if moved from the facilities. In fact, the Ministry of Community and Social Services had anticipated this concern years earlier and had made efforts to plan for and relocate many of the people who had the most significant support needs during earlier closure initiatives.
While there was good evidence that people with equal or greater support needs had successfully moved from the institutions in the past, there was one factor that had to be considered. Since the time that the government committed to close institutions in 1987, almost twenty years had passed. All the while, the Ministry had maintained a zero admission policy to the facilities. As a result, those who remained were older and had very long histories of institutional living. The average age of residents in 2004 when the final closure was announced was forty-nine years. Additionally, many people had lived in an institution since childhood, with the average length of stay of residents at that time being forty years.
Community Living Ontario intervened in the court case to support the government’s plan for closure. This was a difficult intervention for a family based movement as it meant standing against families who were calling for their sons and daughters to remain in the institution. One ironic twist of this clash was that the parents involved in the court action were affiliated with family support groups that existed in each of the institutions. These groups had been set up and funded years earlier by Community Living Ontario as part of its effort to assist families of institutional residents to support one another and enhance their advocacy. Community Living now found itself on the opposite side of a legal action brought by groups that it had founded.
The association balanced its message to the court by saying that, while it believed that the government should proceed with closure of the institutions, families should be granted a role in helping to plan what the community based alternatives would look like. At that time, the UN Convention on the Rights of Persons with Disabilities had recently been passed, though not yet ratified by Canada. Pointing to Article 12 of the Convention, which deals with recognition of legal capacity, the association argued for the right of those leaving the institutions to be adequately supported in their decision making and argued that families should play a role in that decision making. The judge ruled in favour of the government, allowing the closure to proceed. The judge further accepted Community Living Ontario’s arguments regarding supported decision making and required the government to ensure the involvement of families in the decisions related to the plans that were put in place for the relocation of each person from the institutions. This ruling represented, as far as we know, the first inclusion of a decision relying on Article 12 of the Convention in a Canadian court case and perhaps the first anywhere in the world.
The process of closing the institutions continued. The outcome of the legal action had a positive effect with many families of those in the institutions renewing their connections as plans for each person’s move to the community were established. The Southwest Regional Centre closed first followed by Rideau Regional Centre. Finally, in the closing hours of March 31, 2009 – the deadline government had set for the closure – the last resident walked out of Huronia Regional Centre. Huronia had been the first institution built specifically for people who had an intellectual disability to open in the province and the last to close. Fifty years and three months to the day after Jerry and Betty Anglin took Pierre Berton on a tour of the Orillia facility, the doors were closed, ending Ontario’s one hundred thirty-three year failed history of institutions. The following day, celebrations of the end of the era were held in towns across the province including a candlelight vigil on the lawn of Queens Park.
Closing the government operated institutions stands as one, if not the most significant achievements of Community Living. For more than fifty years, families had worked through their local associations and in collaboration with Community Living Ontario to build from nothing a comprehensive system of community based supports and services to replace the institutional system that had predominated for so long. Even with the community services in place, the effort to convince the government and the public that it was safe to shut the doors of the facilities was a monumental task. But the association did not waver in its commitment to its deeply held beliefs and its goal that “all people live in a state of dignity, share in all elements of living in the community, and have the opportunity to participate effectively.”
While the large government institutions were gone, Community Living Ontario knew that institutional practices still existed in the province, even within some of the services and supports that we offer; and the risk that new institutions might emerge in the future was a real possibility. The People First movement had long reminded people that an institution is not merely defined by the size of the building in which people live; rather, people are institutionalized whenever systems are configured in a manner that takes away a person’s power to speak for themself and direct their own life. Within weeks of the final closure, Community Living Ontario convened a forum to consider the matter. The forum drafted a call to action calling on all members to work to end institutional practices of all sorts and fight any attempts to rebuild institutions in the future. The Call to Action was adopted unanimously by the provincial membership at the Annual General Meeting later that year.