Celebrating Seventy Years of Community Living Part Seven: Parent Advocacy

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When Mel turned 6, my mom worked hard to have him educated. She took him to an elementary school in East York where she was told that Mel could not attend. She wouldn’t take no for an answer and wouldn’t leave, until the principal agreed. However, he only agreed if she stayed in the class everyday. I’m sure he thought she’d give up, but she didn’t. At the end of the year, she had a meeting with the principal who told her he didn’t think it would work the following year, so Mel was not able to enroll again. In 1949 she contacted her MPP, Agnes MacPhail, who was in total agreement that children like Mel had a right to be educated.

This is a snippet from a message I received from Wes Stitt about his mother Kathleen. For those of you who read the first article in this series about the first meeting of parents in 1948 that lead to the creation of community living, you will recognize the name Stitt. That article told how Wesley Stitt arranged for a room in the basement of a church on Carlton Street in Toronto and invited those interested in meeting to discuss what could be done for their sons and daughters who had an intellectual disability. Wes Stitt, son of Wesley and Kathleen, contacted me after reading the article to let me know that while his father played a role in arranging that meeting, it was actually Kathleen who invited people and made the arrangements for the church. I thank Wes for letting me know the important role his mother played — the kind important role that so many mothers have played throughout our movement’s history. The above story about Kathleen advocating for Mel will sound familiar to anyone who has been around Community Living for any length of time. It is one bit of a much bigger story — the kind of story that has occurred tens of thousands of times over the 70 years of our history.

The community living movement was started by families and families have remained at the heart of the association and its work. Community Living Ontario has always affirmed its commitment to being a family-based association. As recently as 2014, delegates at the Annual General Meeting reaffirmed this commitment, inserting clauses in the Mission Statement of the association, the key clause being “that families are the heart of the membership of the community living movement, and that families are crucial to advocating and fostering inclusion for people who have an intellectual disability.”

In the early years of Community Living Ontario, much of the work of the association was done by parents, many of whom were advocating on behalf of their young children. As their children grew into adulthood, and as the self-advocacy movement grew, the advocacy voice of the association increasingly included people who had an intellectual disability. When Community Living Ontario describes itself as a family-based association today, the description includes people who themselves have a disability as well as all their family members who stand with them.

Community Living Ontario has launched many initiatives over time to directly support families. In 1978, the association undertook a successful advocacy initiative to convince the government to make changes to its proposed family law reform legislation, Bill 59. The bill would have established an obligation of parents to support children with disabilities over 16 years of age. Such a law would have placed an obligation on the parents of people with disabilities that no other parent had. Furthermore, it would have potentially jeopardized the autonomy of adults who had an intellectual disability by legally tying them to their parents’ care.

Community Living Ontario has also advocated for a range of other supports for families such as funding for the cost of home renovations or upgrades and vehicle modifications, needed to support a son or daughter with a disability in the family home. And we have advocated for a full range of support options for aging individuals who have an intellectual disability, including appropriate options for families that have made a conscious choice to not accept traditional forms of service.

In 1980, Community Living Ontario provided funds to parents of people living in the government operated institutions to help them to establish family liaison groups. These groups were aimed at giving a voice to families of people living in the institutions as they advocated for the rights of their family members. In an earlier article, we heard of an incident in 2006 when Community Living Ontario intervened on the opposite side of a court case against two of these family liaison groups that were fighting to keep institutions open. It was a challenging situation for a self-proclaimed family-based association but one we felt compelled to navigate given our commitment to free the last of those trapped in the government’s institutions.

In the early years of the movement, the predominance of parents was unchallenged. As we grew, however, other voices emerged. Staff of local associations, particularly executive directors, took on an increasing role in the work of the movement. Through the 1980s, the voice of people with disabilities increasingly dominated the conversation. Parents worried that their voices did not carry the influence they once had in the movement. Something needed to be done.

In 1991, Community Living Ontario launched the Family Support Institute of Ontario. The Institute was intended to give a renewed focus to the advocacy voice of families, and, in particular, to parents. Like People First, that had ten years earlier entered a collaborative relationship with Community Living Ontario to share office space and resources, the Family Institute was located within the association’s offices. As occurred with People First, the Institute soon desired more autonomy. While People First Ontario was clearly established as a distinct and independent organization, the Family Support Institute was envisioned, at least by the board of Community Living Ontario, as an instrument of the association – much like The Council is today. Serious disagreements emerged between the board and leaders in the Institute about its authority to act autonomously, and, in 1996, the Institute disbanded, declaring unreconcilable differences.

Once free of the constraint of their relationship with the association, work was undertaken by parents to reorganize as an independent family group. Family Alliance Ontario emerged as a new family support organization independent of Community Living Ontario. While the birth of the Alliance resulted in strained relationships with the association, differences between the organizations were soon set aside in the interests of working collaboratively towards the shared aim of supporting families throughout the province. For many years, Community Living Ontario and Family Alliance have been strong allies and have worked collaboratively on many issues.

With the Family Institute disbanded and Family Alliance working separately from the association, there was a need, once again, to provide a path that would ensure that the voice of families continued to play its traditionally central role in our work. Today Community Living Ontario maintains an active family engagement group. The group meets several times a year to discuss current issues and provides advice to Community Living Ontario. The group provides support to many of Community Living Ontario’s family engagement events. The group also appoints a person to represent their interests on the Community Living Ontario Board.

The association’s family focus comes from an understanding of the deep, life-long commitment that families have to the wellbeing of their family member who has an intellectual disability. We hear repeated stories of senior parents who have provided support to their son or daughter with a disability throughout their life and have no guarantee that support will be there when they are no longer able to provide it. Community Living Ontario has told the government time again that it must provide guarantees to any senior person who is continuing to support a family member with a disability. Parents want to be certain that, if they don’t wake up tomorrow, the supports that are needed will be available to their son or daughter.

Community Living Ontario, along with many families, raised such concerns with the Ontario Ombudsman in 2012. In 2016, after investigating almost 1,500 complaints from people who had and intellectual disability and their families, the Ombudsman released the report Nowhere to Turn, calling on the government to address the crisis in supports faced by families.

Community Living Ontario continues to advocate for such guarantees. Standing side by side with families, we will not give up until every parent can go to sleep at night, confident that their son or daughter will have the support they need to live a happy life in community even after they are no longer there to fight for them.

Parents have fought for the rights of their sons and daughters who have disabilities for the past 70 years of our history as they have for millennia before we existed. There is no stronger impulse than that of a parent to love and protect their children. It is a primeval force. It is the force that our movement harnessed — no, that’s not right. Such a force cannot be harnessed. We are an association — a place where parents came together to associate — full of passion and determination. Nothing was harnessed. Instead, the collective determination of families was amplified through their association with one another. If one thing is certain about our future, it is this — that voice will never be silenced.