Celebrating 25 Years of Engagement & Advocacy
The struggle to recognize, and respect the voices and rights of people who use services has been a long road. While we are now in the midst of new legislative calls for patient engagement, the truth is that service users have been politically engaged and participating for many decades. Advocacy – being a voice for others, has been a fundamental facet to ensuring that our human rights are protected in any and all healthcare strategies or transformation. This is especially important in psychiatric facilities where people are at their most vulnerable and may not have anyone to support their interests or wishes.
The rise of patient controlled-patient councils in the early nineties was one way that the interests and concerns of patients were heard. The impetus for these councils began in the eighties and was preceded by many reports such as the Graham Report (and others) which called for more citizen participation. More importantly, by the mid-eighties public scrutiny over incidents of abuse, overuse of medication, restraints, and deaths of patients let to reviews and rethinking about medical control, and the need to foster spaces where patients could be better heard. During this era, psychiatric survivors / consumers pushed against the ubiquitous paternalism in the mental health care system and struggled for mental health reform. Community members, allies and disability organizations made presentations or deputations at public hearings on the need for support from psychiatric hospitals for the development of patient councils.
By the 1990’s the government of Ontario encouraged psychiatric hospitals to dedicate a portion of their budget to independent patient councils run by and for service users. The council model was one with service user members, boards elected by their members, and staff hired by them that reported to their Board of Directors. The value was one of citizen accountability, in which council staff took their direction from service users, and reported to them. The first patient council was established at Kingston psychiatric hospital followed by the second at what was then the Queen Street Mental Health Centre. The Queen Street Patient’s Council was established in 1992. Soon, other patient councils were also formed across many provincial psychiatric hospitals which subsequently prompted the creation of the Ontario Association of Patient Councils in 1993 – a coordinated network of representatives from Patient Councils in psychiatric facilities. The Queen Street Patient Council carried on its work from 1992 until 1999. The Queen Street Patient Council under the pressure of the hospital’s impending merger of its three sites (Donwood, Addiction Research Foundation and the Clarke Site) joined the merger toward CAMH and subsequently became what we now know as the Empowerment Council. With the support and guidance of David Reville & Associates, an Empowerment Report was developed during the time of the merger and in this report, recommendations for the development and mandate of The Empowerment Council. The report also included recommendations for a centre wide Bill of Client Rights. The Empowerment Council was officially incorporated in 2003 and after over 3 years work by the Empowerment Project (which became the Council) the Bill of Client Rights was adopted by the CAMH Board in 2004 and serves as one of the best Bills on sharing information about patient’s rights.
Over the years, The Empowerment Council’s work has grown and evolved. We are a sought after organization for student placements, hopes for employment with our organisation, endless requests of our expertise for education initiatives and presentations to universities, conferences, representative parties and expert witnesses in the justice system, police services and service user initiatives. Our research portfolio has been slowly growing as well as our academic contributions in the fields of Mad Studies, Law, Social Work, Medicine, Healthy Equity and Social Justice Studies. Our understanding about the importance of human rights for our most vulnerable citizens is well respected and recognized.
The model of patient engagement broadly followed in Ontario today involves advisory or focus groups instead of Councils, accountable to the hospital, as opposed to the community the hospital is there to serve. Now, Independent Councils thrive only in Penetanguishine and Toronto. The work of these Councils forms a continuity of advocacy work that is unparalleled in Canada and we need to continue to protect, support and empower the independent voice of service users for many years to come.
Thank You
Over the years, there have been many people whose work and support has contributed to the effectiveness and the impact of the Empowerment Council. Our sincere appreciation goes out to those individuals and organizations – a few of whom are listed below.
Current Empowerment Council Board of Directors: Sheldon LaPorte (Co-chair), Darlene Stimson (Co-chair), Catherine Bennett, Erin Claman, Lorne Donnelly, Francine Geraci, Danielle Landry, Sandra Petite, Veronica Snooks
Past Empowerment Council Board Chairs including Beamer Smith, Cathie Adams, Susan Gapka, Andrew Hudson, Kelly Lawless, Joanne O’Brecht, Danielle Waters; and other founding or long-time board members including Leo Anter, Alex Buxton, Linda Chamberlain, Shannon Hardie, Alex Buxton, David Crockford, Gregory Kim, Carole King, Alex McLarty, Leslie Miller, Steven Torresan, and Dorothy Sedore.
CAMH and U of T staff: Catherine Zahn, Jane Paterson, Rani Srivastava, Lori Spadorcia, Janet Mawhinney, Vicky Stergiopoulos, Mark Fefergrad, Priya Raju, Kenneth Fung, Lisa Anderman, Paul Garfinkel, Joannne Campbell, Betty Miller, Workman Arts. And our late friends: Julia Greenbaum and Diana Capponi.
Empowerment Council volunteers/former staff and project colleagues: Stef Mendolia, Diann Chea, Toby Samson, Jonathan Balazs, Lisa Walter, Chris Spencer, Helen Hook, Lauren Munro, Julia Devaney, Jessica Evans, Andrea Daley, Lori Ross, Kathryn Church, David Reville, Victor Willis, Jijian Voronka, Roy Bonadonna, Peggy-Gail DeHal-Gunraj, Heather McKee, Carole King, Jenna Reid, Tucker Gordon, Sarah Prowse, and David Wong.
The Law and Mental Disorder Association, Anita Szigeti and Associates, Mental Health Legal Committee, Marshal Swadron & Associates, Mercedes Perez, Alexander Procope, Kelley Bryan, ARCH Disability Law Centre, Tess Sheldon, Karen Spector, Mary Birdsell, Suzan Fraser, Ryan Fritsch, Parkdale Community Legal Services. A special thanks to all our counsel who have worked tirelessly with us in our advocacy efforts and have assisted us over the years with advice, court and inquest proceedings.
Project funders: University of Toronto, Status of Women Canada, Women’s College Hospital, Legal Aid Ontario, Toronto LHINS Access Point, the City of Toronto Access, Equity and Human Rights grant, Community Legal Services.