Nothing about us without us: Integrating the client’s voice and lived experience

June 12, 2023
Listen and you will hear it at every level, in every working group, committee, and program area at CMHA Toronto: the client’s voice, sharing their lived experience and helping shape the agency’s work.  
“The agency is recognized for … its best practice in engaging people with lived experience of mental health challenges in the agency’s decision-making and advocacy work. CMHA Toronto demonstrates tremendous strength in this area…. UWGT shares the commendation of Accreditation Canada on CMHA Toronto's commitment to deeply integrating clients and families and caregivers into many roles and levels within the organization. This has resulted in high satisfaction rates from both service users and their families.” 

United Way Greater Toronto, February 2023

The voices of clients and family members are deeply embedded in the culture and structure of the agency. Client and family member inclusion is intentional, mission-critical, and recognized widely as a best practice for advocacy and change within CMHA Toronto and in the broader mental health community.

Recovery Focused, Equity Based 

Behind the scenes, what drives CMHA Toronto’s commitment to client inclusion is its focus on recovery, which is deeply linked to equity. 

“The recovery movement with mental health is trying to reimagine recovery as a personal journey rather than a medical one. Medical recovery has a narrow view with the primary goal being the complete absence of illness. Personal recovery recognizes the importance of the journey and allows people to define what recovery means for themselves," says Amie Tsang, Health Equity Facilitator at CMHA Toronto, who plays a role in championing the client voice. Amie adds that, given this context, "it is important to understand the role of stigma and discrimination in the recovery journey.”  


There is no better way – and, many argue, no more ethical way – to understand the role of stigma and discrimination than by listening to and including those who have lived it first-hand.  

“If you think about health as something that we all have access to, you can think about health equity as something we're aiming to achieve. All people should have access to their full health potential. And we know that many different things, particularly the social determinants of health, really impact that,” said Amie.  

Inequitable access to the social determinants of health, such as housing, employment, food security, belonging and inclusion, compromise people’s health, “so while we're a mental health organization at our core, a lot of the work we're doing may not look like direct mental health work. It is looking at addressing the social determinants of health,” Amie explains. 

 

 

All people should have access to their full health potential. And we know that many different things, particularly the social determinants of health, really impact that.

AMIE TSANG, HEALTH EQUITY FACILITATOR, CMHA TORONTO

Creating opportunities to hear the client & family voice  

CMHA Toronto has a long history of promoting involvement of its clients in its work. One of the first fully client-driven initiatives emerged from the Tenant Advocacy Group (TAG), founded by a group of clients living in CMHA Toronto housing. TAG originated to provide service user input to the agency’s policies and practices around tenants’ rights. 

Wanting to build a greater sense of community among all service users, TAG started a newsletter in 2017 which was written, designed, printed, and distributed entirely by clients. The newsletter shared information with clients and created a way for CMHA Toronto staff to hear about what was important to clients directly from them.  

Put on hold during the pandemic, TAG hopes to restart its newsletter soon.

Making change happen in committees

Another important channel to hear the client voice is through CMHA Toronto’s many committees, which tackle everything from social events to mental health practice standards to anti-racism initiatives. Every committee includes at least one, and often more than one, client representative who shares their story and offers their perspective to help bring about constructive change at CMHA Toronto and within the broader mental health community.

One of these committees – the Client and Family Advisory Committee – is dedicated to advancing client and family-centred care and engagement throughout CMHA Toronto. Client and family members sit on working groups related to client care, health system processes, client safety concerns, policy, and strategic improvement initiatives. They may also be involved helping to identify root causes of specific problems and coming up with solutions, and they may participate in surveying other clients and family members about their experiences so that the organization can gain and apply these insights.

Committee work is not just representation, it is meaningful participation.

“Because we operate with lots of committees, it means that staff voices are heard, clients’ voices are heard. It's not management doing their own thing and then telling us what to do. The committees are places where people can bring forward concerns and ideas and know that they’ll be heard,” said Amie.

G.*, a client member of the Mental Health Standards Committee, said that “they need voices like ours to know what the client needs. Not everybody has the same ideas, or the same perspective. Sometimes you have to push your idea a little bit because [CMHA Toronto staff] know where they’re coming from but if you haven’t experienced what we have you may not understand where we’re coming from.”

* name withheld to protect client confidentiality

Including the client perspectives in hiring decisions

The Interviewers with Lived Experience Panel, named by clients and family members themselves, brings the client perspective to almost every hiring decision CMHA Toronto makes. Members are trained and supported to take part in interviews and evaluate candidates being considered for roles within CMHA Toronto, up to and including the chief executive officer.

“I've gotten feedback from managers who have said that having people with lived experience on their interview panels has really changed the way they conduct the interviews,” said Amie. Clients may ask candidates questions that managers might not think to ask and assess a candidate’s fit through the unique lens of a client.

Amie emphasizes that client involvement in interviewing is substantive. “It's not just to check a box. We have developed a formal training program where clients learn from HR professionals how to conduct interviews, how to evaluate candidates. They get practical experience. It is a process that really makes sure their voices are included,” said Amie.

Jacqualine, whose story we shared in an earlier post, said that her participation as a client member of an interview panel “was transformative. It reminded me that I do still have skills and I still have something to give despite everything that I've gone through,” she said.

“I felt like I was contributing to society again. The encouragement that I received from the other managers and staff on the panel was very uplifting.”
JACQUALINE, CLIENT PARTICIPANT ON THE INTERVIEWERS WITH LIVED EXPERIENCE PANEL
For Jacqualine and other clients, being involved in CMHA Toronto’s work beyond the role of client can help advance their recovery in ways both tangible and intangible.

Why is it so important?

While the benefits of including the client voice for them, their family members, and CMHA Toronto itself are many, there is one other overarching and important impact it has: it brings people who access services and service providers together on a level playing field.

In other words, it’s a step on the path to equity and justice.

“There's a saying in disability justice: nothing about us without us. I can't think of a better way to explain why involving clients in our work the way we do is so important,” said Amie.

“All the work we do is in service of bettering the lives of the people we support, but the way the system is set up, there is an inherent power imbalance between professionals and clients who are seeking service. We're trying to make the agency as welcoming as possible, as recovery-focused and as trauma-informed as possible. We're trying to address stigma and discrimination. So as much as possible, we are finding ways to uplift client voices into places where it can be heard.”

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