Celebrating Seventy Years of Community Living Part Eleven: Sorting Out the Role of Community Living

CLO 70th Anniversary banner

by Gord Kyle

When the community living movement began in the late 1940s, it was an association of parents united in the cause of finding strategies, tools, and services that would provide their sons and daughters the opportunity to live with and near family and take part in community life. These families organized into community groups and, in 1953, the existing groups came together to form a provincial association that is today Community Living Ontario. The provincial association was created to give the local groups a place to gather, share ideas, and support one another. Additionally, and equally importantly, the provincial association was designed to amplify the voices of the local groups to be more effective in advocating for social policy change and funding.

The effort to find consensus among the original members of the association was no doubt messy — such is the nature of complex social change. The membership at that time, however, was reasonably homogeneous, made up almost exclusively of family members. Additionally, while there was a lot of change that was needed, the original landscape that these families faced was, in one respect, uncomplicated when compared to today. There was a binary choice for parents at the time: send your son or daughter to an institution where they will get a full range of government supports, or keep them at home where it was illegal for many of them to attend school and there were no other community supports available. There was not much room for philosophical debate about the next best thing to do; anything that might be found to create community supports was better than the alternative.

Over the years, a huge range of options was created. Today, the landscape is extremely complex. There are a multitude of ideas about how best to ensure social inclusion and much room for disagreement. Should group homes still have a role in the options we provide, or should every person be supported to live in their own house or apartment? Should students be included in a regular classroom 100 percent of the time, or would there be merit in some independent or even congregated education? Was the government’s decision to finally close sheltered workshops the correct one; can we really find adequate employment for everyone who wants it? Should we advocate for a significant increase to ODSP income support to lift people out of poverty, or would people benefit more from a rethinking of social assistance and the establishment of other support strategies to begin replacing the need for ODSP?

In addition to the complexity of policy choices that exist today, there are far more players in the sector. The movement started with a group of parents who organized themselves for change. As they grew in numbers and in strength, the local associations they established — governed by boards of directors — came to be recognized as a voice, made up of parents but still unique entities. Over time, given the growing complexities of the associations, boards of directors hired employees and increasingly relied on their executive directors to help guide the direction and work of the locals. Executive directors created links amongst their cohorts and in time began to seek opportunities as a group to contribute to the work of the provincial association. In the early 1980s, the self-advocacy movement took off. Originally, People First Ontario looked at ways to integrate its work with Community Living Ontario before making the decision to be fully independent. Community Living Ontario undertook other strategies to ensure ongoing involvement of a self-advocacy voice in the association, including the creation of the Council.

Finding a way to include and respect all these various constituents has represented a tremendous challenge for the provincial association. I was going to use the phrase “marrying” all these constituents in the previous sentence but realized that the metaphor was incorrect — marriage implies a mutual agreement to join together but that is not really what has occurred. As the association grew from a group of parents to what it is today, objections have been and continue to be raised about the recognition of additional constituency groups.

Each of these constituencies has argued why they deserve recognition in the work of the associations. Families can rightly claim that they were the founding members and deserve a preeminent position in the pecking order. People who have an intellectual disability argue logically that the association would not exist if not for them and they remind everyone of the principle “nothing about us without us.” Local boards of directors have reasonably argued that since they are the exclusive dues paying members in the provincial association, they should have significant say in how resources are allocated and therefore what work is conducted and what positions are advocated for. Executive directors, who are deeply immersed in all aspects of the association’s work in communities across the province and bring tremendous insight, commitment, and talent to the table, want to be part of the decision-making and work of the association.

Operating within this messy mixture of groups and individuals is one of the greatest challenges that Community Living Ontario works to address. Of course, the diversity of roles and perspectives leads to a diversity of opinions regarding actions and priorities. While there is universal support for the foundational vision and values of the association, it is exceedingly difficult to find full consensus on the actions that need to be taken to achieve the vision and adhere to the values. As a result, we frequently change direction, sometime reversing our view on things we once advocated for.

Throughout our history, our movement has many times created support options for people and then, as our thinking continued to evolve, questioned those options. We have time and again dismantled our own work in favour of new ideas. Dealing with the complexity of evolving community supports has been a major part of Community Living Ontario’s work over the years and has represented one of our strongest characteristics, leading to ever better solutions. What sometimes appears to be a contradiction — our tearing down something we worked and advocated to build — is, in fact, a coherent evolution of our thinking and strategies.

Of course, creating and building one solution does not necessarily require blowing up the solution that came before it — at least not immediately. Some of our solutions, such as sheltered workshops, have been eventually superseded by other, better solutions, such as working in the community. Once the workshops were no longer needed, we argued to close them. But, during the transition, Community Living Ontario fought for appropriate levels of workshop funding to ensure that the people who continue to rely on them were adequately supported. Transition periods such as this are particularly tricky for the association and have caused great tension amongst various parts of our membership. Some of our members disagreed with advocating for the end of the workshops while others were frustrated by the slow reform as Community Living Ontario argued for continued funding for a service they wanted to see ended. These conflicting views were on display in the early 1990s at a Queen’s Park rally that Community Living Ontario coordinated. When the NDP government won the election in 1990, they discovered that they had been left with an unexpected $10 billion deficit. They began to cut costs, including in our sector. In response, Community Living Ontario called on members to rally on the lawn of the Legislature and more than 4,000 people showed up (one security guard told us it was the largest protest he had seen in his time at Queens Park). The protest took place shortly after the government announced the launch of its task force on alternatives to sheltered workshops described in Chapter 3 — an initiative that Community Living Ontario supported and was part of. Even though we made clear to our members that the rally was intended to protest funding cuts, there were, peppered throughout the crowd, many holding placards reading “Save our Workshops” — not at all the message we were there to convey. But some of our members wanted to be heard, even if they were contradicting the provincial association’s stated objectives.

As a related side story — a few years after losing power to the Progressive Conservatives, Bob Rae spoke at a Community Living Ontario event. He told the audience that our protest was one of the things that caught him most off guard during his time as Premier. He described how he looked out his office window the day of the protest and could not believe that this group that he admired so much could be so angry with him. He turned to his executive assistant and said, “I don’t want Community Living on my lawn. Go down there and find out what they want and give it to them.” While we felt the sting of funding constraints throughout the ’90s even after the NDP left office, developmental services did do much better than other sectors in avoiding cuts — so perhaps our protest had an impact.  Now back to the point of this chapter.

Our success in navigating stormy waters has been remarkable. Consider that when Victoria Glover wrote her letter to the Toronto Star on behalf of her grandson — sparking the meeting of the first family-based association — the only funded option available for her and her grandson was a placement in an institution. Then consider our advocacy success in convincing the government to establish in 1967 what is known today as the Developmental Services Branch under the Ministry of Children, Community and Social Services, a branch that presently has a budget of around $3 billion. There are no parallel mechanisms for any other disability group; this was a singularly unique achievement brought about by the work of our members. Community Living Ontario and its local association built from nothing during its early years a wide range of programs and services that provided real alternatives. It took 35 years, until 1987, for the government to fully acknowledge our work and release a plan to fund and build a comprehensive system of services based on what we had created — a system that would replace the institutions 22 years later. We had not only provided a second path for families other than institutions, as Victoria Glover called for, we succeed in making institutions unnecessary.

The complex nature of our association was evident even in our response to this great achievement. Minister John Sweeney unveiled the policy “Challenges and Opportunities,” which committed to community investment and the closure of the institutions, at the 1987 Community Living Ontario Conference in Ottawa. At the end of the speech, many in the room rose to give the Minister a standing ovation. Others in the room remained seated. Discussions after the Minister’s speech revealed that some of our members were displeased that a standing ovation had been offered. While these detractors welcomed the historically significant news that institutions would close, they were reluctant to applaud additional investment in services systems without knowing the form that would take. The wanted to ensure that the investments did not simply shift institutional services into the community.

Questions about the form that services should take began in the early ’70s around the time that Wolf Wolfensberger published The Principle of Normalization in Human Services and turned on its head the thinking about the roles people who have disabilities play in society. In 1975, Community Living Ontario convened a forum with members to consider whether the provincial association should be divided into two independent agencies — one to deliver services and one to promote advocacy and personal relationships. The following year, 1976, the association developed a document titled The Future Role, written by a consultant named David McCoy and based on the discussions that the association had been engaged in. McCoy recommended to the association that changes were needed if Community Living Ontario was to remain true to its goal. Among other issues, it discussed the conflict of advocacy and service provision. Members passed a resolution at the 1976 annual general meeting calling on all local associations to turn over programs they ran to others and to focus exclusively on an advocacy role. The only local association that I am aware of that, at the time, undertook specific action to fundamentally change its focus from program delivery to straight advocacy and individual support was what is today the Brockville and District Association for Community Involvement. Brockville continues to adhere to this approach today and, over the years, has been joined by other local associations who adopted the strategy to varying degrees by decreasing, if not eliminating, the delivery of funded programs.

The ongoing debate in the association about the focus on programs versus other options of individualized services and advocacy took a significant turn in 1994 when several local associations began to openly express frustration with the provincial body. The Board of the Collingwood association, one of the disgruntled local associations, drafted on behalf of others a discussion paper titled O.A.C.L.: A Federation in Conflict. That paper described the frustrations that this group of local associations shared. They wanted to see more focused advocacy aimed at funding and development of existing services. The Board of Community Living Ontario issued a response paper titled We Need to Talk. Talking did not resolve the conflicts this time. In 1996, the disgruntled local associations withdrew their memberships with Community Living Ontario and formed a new provincial organization, Ontario Agencies Supporting Individuals with Special Needs (OASIS). The Merriam-Webster dictionary defines an oasis as “a fertile or green area in an arid region … something that provides refuge [and] relief.” Clearly, those responsible for the name chose the acronym as a metaphor for a new organization that, in their view, offered refuge from the complex wilderness that was Community Living Ontario.

For many years it was difficult for Community Living Ontario and OASIS to find common ground. While there was not any open fighting between the two organizations, neither was there an appetite for collaboration. This changed in time. Eventually the tensions between the two organizations eased. More of our local associations joined OASIS. In fact, most of our members today are also members of OASIS and several of the local associations that left to form OASIS, including the Collingwood association which today is called E3 Community Services, have rejoined Community Living Ontario. OASIS has, in fact, helped to a large degree with some of the complexity in advocacy that Community Living Ontario has struggled with. Today, OASIS maintains a focus on the provision of excellent services. Through partnership, we can cede some of the work to OASIS regarding service delivery issues and support their advocacy for policy and funding changes.

OASIS is not the only player that has emerged on the provincial scene within the developmental services sector. For many years, Community Living Ontario was the only voice that the government heard from with respect to issues faced by people who have an intellectual disability and their families. Today, in addition to OASIS, there are many others including a collaborative body, the Provincial Network on Developmental Services, that both Community Living Ontario and OASIS are part of.

Aside from those focusing largely on service delivery issues, there are groups such as Family Alliance Ontario that provide a coordinated voice for many family groups across the province and People First Ontario that provides an important voice to people who have an intellectual disability. While we are no longer alone as an organization, Community Living Ontario remains the only group that attempts to bridge all the elements of family, self-advocacy, and service delivery. To this end, we work in partnership with all the groups listed above. Addressing the complexities outlined above provides us with one of our greatest strengths and the best chance at achieving the goal the founding members established. This is a very messy association. Nevertheless, there is a coherency and integrity to the positions that Community Living Ontario has taken over time, positions that have been informed by the myriad of opinions that have been expressed as we all struggle to achieve common objectives.