Maytree blog

Four strategies to strengthen the leadership of lived experts in an advocacy network

Published on 24/04/2019

For this installment of our series on rights-based participation, we reached out to Patricia Smiley and Kyle Vose, co-chairs of the ODSP Action Coalition, to learn more about the Coalition, the organization’s approaches to ensuring the leadership of those with lived experience, and how they deal with the challenges that arise in collaborative decision-making.

The ODSP Action Coalition is a grassroots network led by people with disabilities in receipt of the Ontario Disability Support Program (ODSP), disability service providers, community agencies, and legal clinics. Anyone on ODSP, a family member of someone on ODSP, or an agency that serves any disability group can join the Coalition.

Together we advocate for improvements to income supports as a line of communication from our members to our provincially elected representatives. We seek to promote the right of disabled persons to an adequate income to cover the basic costs of shelter, food, and other basic necessities, and to reduce barriers to accessing the income and employment supports the Ontario Disability Support Program is supposed to provide.

Creating democratic structure and process

It is the structure of the Coalition itself that ensures that ODSP recipients are at the heart of our work. ODSP recipients do not just participate in our work but play vital and necessary leadership roles. Each committee in the Coalition is made up of agencies as well as ODSP recipients, and each committee has two co-chairs — an ODSP recipient and an agency member. Core decisions are made by our Steering Committee, which is made up of the co-chairs of each of the committees. The Steering Committee is also led by two co-chairs, one of whom is an ODSP recipient and the other an agency member. Presentations in the community are given by those with lived experience allowing the voice of those living with a disability to advocate for their own community.

This structure was created deliberately, based on the desire to see those with lived experience join the Coalition as equal partners in decision-making.

The Coalition started out in 2002 as town hall meetings between legal clinics and other community agencies who provided services to disabled persons. The meetings were in response to the spike of cases being denied across the province after the introduction of the new disability program, which seemed to be created to deny by design. More than 50 per cent of those applying were being told they didn’t qualify for one reason or another.

Those town hall meetings were a way of sharing what was happening across the province and how our actions were getting results.

The other goal of the Coalition was to be able to advocate for changes to the program. Conferences were held every two years, and agencies sent staff from all over the province to connect and share information.

But the one crucial thing that was missing was the involvement of active members who had lived experience and were ODSP recipients. Without the voices of those living with a disability and living on ODSP, we were only hearing half of the issues; and without this lived experience we could not get a message out to the general public and build community support for our issues. So in 2007, during one of the conferences, members voted to change the structure of the Coalition.

The structure of the Coalition is founded on our Terms of Reference, which is a living document, reviewed regularly to ensure that it does describe what we do and how best to respond to the current situation. This allows us to be flexible and respond to what our members want. When we created the original Terms of Reference we had help from an outside agency to design the document. But we make changes as different issues arise within the Coalition or depending on what is being requested by our members (like the change from having only an agency chair for each committee to having an ODSP recipient chair and agency chair). Our decision-making relies on democratic process as much as possible, meaning we usually have a vote from our members at our General Coalition meetings or at our community meetings to change the terms.

The Coalition also adopted the UN Convention on the Rights of Persons with Disabilities as well as the 5 Practices and 10 Commitments for Leadership from The Leadership Challenge, a book by James M. Kouzes and Barry Z. Posner. This means that when we go to government meetings and consultations, people who are living on ODSP are present at those meetings speaking about their lived experience, and agencies speak about the issue from their point of view.

Strengthening self-advocacy skills

From the beginning, supporting ODSP recipients in developing their self-advocacy skills has been a key part of the Coalition’s work. The Coalition has created presentations called “Knowing Your Benefits” and “Advocate with Confidence,” which help educate community workers, family, people living with disabilities, and agency staff about the program, the benefits, how to apply for them, how to advocate, and who to advocate to. The presentations also help people understand their rights on appeals and the appeals process.

We have also created workshops and train-the-trainer models. This allows us to share the training all over the province.

Resolving conflicts 

Just like any organization, we have issues and conflicts as we try to make decisions together.

Not all people with lived experience of the system share the same concerns about the system and how it affects them. What is a positive improvement to the system to some doesn’t affect all recipients to the same degree. Simply put, lived experience is direct, personal, and particular.

That means sometimes we may have to advocate for something that may only help a small portion of our community, which can be challenging for members. For example, only 10 per cent of those on ODSP work, but we spend much time and energy on advocating for a smaller claw back rate to allow more recipients to keep more of earned income.

But when we are advocating, we emphasize that any win, however big or small, is a win. We hope to help as many recipients as possible with every change we get, but we can’t help everyone or advocate for every issue that is raised in our meetings.

Moreover, dealing with stigma, internalized oppression, not to mention poverty — which is grinding and ongoing — can lead to both anger and burnout. Not all recipients are willing to speak publicly about their own experiences and often being expected to leap at such an opportunity feels like an intrusion on the most personal aspects of their lives. We use our “Advocate with Confidence” presentation and try as much as possible to mentor new members in preparation for meetings with their local government representatives. We also expect Chairs of all of our committees to be examples for others to follow.

There have also been times over the years when in the development of our positions there has been a distinct and noticeable difference between what seems sensible and practical to our agency members and what really would work for those whose daily lives are dependent on the program. While at times it might seem that our agency members are better versed in what is on paper, there are often numerous reminders from recipients that what sounds good on paper doesn’t always work for recipients who live with the daily realities of the system.

As issues have arisen, we have revisited our Conflict Resolution Policy with support from St. Stephen’s Community House. They have helped not only facilitate the conflict process but also helped strengthen our conflict policy. People who feel that they are not being heard or create conflict with others are asked to go through this process; if they refuse, they are then asked to leave the Coalition as a last resort.

Encouraging local leadership

Despite our challenges, there is no doubt that we have succeeded in offering ODSP recipients the opportunity to meaningfully engage in advocacy work that brings their experience and leadership to the forefront. We have been able to save the Work-Related Benefit and the Special Diet Allowance, and we advocated for raises to the rates and changes to the forms used by the ministry. We have been consulted on future changes to the program, at times been able to stop major negative changes from happening, and we have sat on committees to advocate for positive changes.

Over the years, the leadership of people with lived experience has been absolutely crucial to our successes. We have found that better solutions can be reached when people with different experiences and different kinds of expertise work together on an issue.

Moving forward, we want to continue to encourage leadership and advocacy by people with lived experience at the local level. We are currently looking to change our Terms of Reference to encourage local groups to form across the province. We hope this will allow local issues to be better addressed, for example, the provision of discretionary benefits to OW and ODSP recipients.

To learn more about the ODSP Action Coalition or join our efforts, visit our website.


Patricia Smiley is the Recipient co-chair of the ODSP Action Coalition’s Policy and Research Committee.

Kyle Vose is the Agency co-chair of the ODSP Action Coalition, and the PHA Engagement Coordinator at the Toronto People With AIDS Foundation.


[Series: Rights-based participation] The co-chairs of the ODSP Action Coalition write about the Coalition and its approaches to ensuring leadership of people with lived experience on ODSP. This is the latest installment of our blog series on rights-based participation.