Article: Consumer Participation on Mental Health Agency Boards

By Jason Newberry

Over the past few decades Ontario's mental health system has been undergoing a slow transformation. Based on sustained citizen advocacy efforts and the appearance of several key policy documents and recommendations in the late 1980s, there have been efforts to establish a mental health system that is more holistic and person-centred in its approach, envisioning collaborative efforts between mental health services, community services, self-help and mutual aid, and natural supports. A strong policy recommendation within these efforts was that mental health consumers, individually and collectively, needed a strong and consistent voice in all aspects of the system. A narrower component of consumer voice has been the membership and participation of consumers on governing boards and associated committees of mental health agencies.

I first examined this issue as a practicum student doing my Masters degree in Guelph, Ontario in 1992. I recall the literature being sparse at the time and there was little to guide a small project other than excitement about the values of citizen participation and our knowledge of some pretty obvious barriers. We knew that there were serious concerns of tokenism where participation existed because only one or two consumers sat on a given board. It was often unclear who they represented specifically and one wondered if people were handpicked to be acquiescent, "high functioning" members. Tokenism was also maintained by the expertise and use of jargon of professional members. As Valentine and Capponi summed up in an important article in 1988, there was an "incongruency between values and practice".¹ Mental health boards, if they were to be considered progressive, were supposed to have consumer members, but a mere seat at the table is long way from meaningful.

I remained interested in this issue and ended up tackling it directly in my dissertation work years later. The landscape had changed a bit. Board membership was certainly much more common. Many agencies had been struggling with how to improve participation after years of difficulty. In some cases, there were some pretty great success stories. It was a good time to be asking the question.

At a fundamental level, I wondered what made participation meaningful. It was a term that was thrown around a lot without any clear consensus or conceptual work about what it actually was. I developed a model to guide my research that assumed meaningful participation was happening when members performed their board duties and activities competently, were able to represent the viewpoints of other consumers, had a degree of influence on board discussions and decisions, and were personally validated for their input and participation.

I also assumed that meaningful participation would be enhanced when there was access to "power resources" - things like having knowledge, information, and skills, social and instrumental support related to board work, and linkages to a broader constituency. I was interested in how consumer board members accessed and used these resources in their roles as board members and how this would impact meaningful participation.

Covering all this information was challenging and the model I created to guide the work contained a lot of ideas and issues. This was intentional. There were many unknowns in this work and I wanted to be as inductive and comprehensive as possible in the beginning stages to best understand the experiences of consumer board members and the related perceptions of their colleagues. In the side bar on the right at the top, you can access a powerpoint presentation that provides much more detail about the research. It also provides quite a few direct quotes from the participants. In this short article, I wish to focus on a central idea that drove the later phases of the research and led to a variety of interesting and perhaps counterintuitive findings.

The Importance of Experiential Power

A repeating theme in the research was the observation that consumer board members reported, and their colleagues observed, that they were most competent and demonstrated the greatest influence on board discussions when they were able to draw upon their own personal experiences with mental health issues, services, and the system, as well as speak to the experiences of other consumers in the community. Under those circumstances, they were also more likely feel validated in regards to their participation - a job well done, so to speak. I called this having experiential power. This seemed like a good term to capture the weight accorded personal experiences and it was also a nice counterpoint to the more familiar concept of expert power (i.e., the power accorded those with expert status and knowledge).

This is not a surprising finding on its own - in fact, all participants in the study (consumer members, other members, executive directors) agreed that drawing upon relevant personal experiences is the central reason to have consumers on boards in the first place. When consumers are able to fill that role, it's a meaningful one. But the core problem seemed to be that all too often consumers were unable to draw on their experiences and make good use of this power resource. There were a number of explanations. Sometimes other board members dominated discussions or were dismissive of the consumer viewpoint. Consumers felt intimidated by the expertise, status, and jargon used by other board members. In addition, the most common problem was that the actual board discussions themselves often dealt with managerial or technical issues common to organizations and day-to-day board work, including budgets, funding, fund-raising, staff issues, and so on.

This seemed a quandary. Could it be that the work of most boards is not very conducive to the participation of consumer members, unless those members also have specific skill sets or professional backgrounds (e.g., financial, legal, social services, etc.)? This might be an acceptable position to take, were it not the case that community boards are also charged with setting the vision, mission, mandate, and associated policies of an organization - areas that cry out for consumer input. Over the course of my research, I started to notice differences in the meaningful participation of consumers. Consumers were able to use experiential power when the board was dealing with higher-level, policy and values-oriented information. I also discovered that some boards oriented towards those types of discussions much more than other boards.

This was exciting to me, because it suggested a structural explanation of when and how participation was meaningful. It lead to me to investigating models of board governance. This area is fairly expansive, and a lot has been written in the organizational development literature. On a basic level, board governance can be seen as a continuum. On one end are boards that are management-focused, and concerned with operational issues and day-to-day tasks of the organization. These boards tend to be larger, with subcommittees devoted to different areas of the organization. On the other end are boards that are policy-focused and concerned with guiding the mission of the organization through policy statements to which the staff are accountable. Operational issues are left to staff. Some boards sit somewhere in the middle of this continuum.

I proposed that consumers on policy-focused boards would have greater opportunity to draw on their experiences and therefore would participate in a more meaningful way, as compared to consumers on management-focused boards. The problem appeared to be associated with differences in role clarity. Policy-focused boards talk about issues that have greater relevance to the personal experiences of consumers, and so there is greater role clarity. They are also structured differently. They are smaller and do not tend to have specialized subcommittees. Management-focused boards are quite the opposite, dealing with issues that are much more relevant to the technical, expert-based knowledge of professional members. This creates role ambiguity. Consumer members, uncertain of how to contribute, may begin to wonder "why am I here?"

Figures 1 and 2 describe the impact of board governance models on role clarity and role ambiguity, respectively, and subsequently the effect on meaningful participation.

Four Surprising Implications

What the implications of these findings? The first thing to notice is that they call into question at least four common practices boards often pursue in their well-intentioned efforts to enhance meaningful participation (MP).

1. Consumer board training probably won't enhance MP.

Many boards have assumed that consumer members have trouble participating because they lack the skills and knowledge necessary to do so. This is quite correct in reference to the technical, operational information typical of management boards. Training may help in some ways. I should note, too, that board orientation is an essential first step for any board member to get comfortable in their new work. But ultimately training does nothing to address the structural barriers of management-focused boards. Consumers will still struggle with technical material and professional members will always have a greater skill and knowledge base to draw on. Despite training, the power dynamics will remain relatively unchanged, yet failure to participate may be attributed to poor board training or, worse, a failure of the individual.

On a personal note, if I was a board member at an civil engineering firm alongside accountants, lawyers, and retired engineers, I highly doubt that some modest training would put me anywhere near the level of expertise needed to contribute to the day-to-day workings of the organization. But what if discussions were about the characteristics of a welcoming, healthy, aesthetically pleasing and diversified neighborhood block? I think I would have a thing or two to say about this based on my own experiences. Experiential power, not expert power, needs enhancing, because that is the strength that consumers bring to the table.

2. Board sensitivity is limited as a contributor to MP

In a lot of the research and literature I have read, a very common recommendation to enhance meaningful participation is to offer different forms of "sensitivity training" to ensure that the board is more open and accepting and sensitive. This is of course, well-intentioned and can be effective in heading off any number of unhealthy board interactions. But I would argue that it is quite limited on its own as way to enhance meaningful participation. If the experiences of consumers are not relevant to board discussions, no amount of acceptance and sensitivity will enhance their participation to a meaningful and equitable level. If consumers have nothing to say, then "board openness" is not likely to change this. In fact, there is potential for gross patronization. We should not expect other board members to congratulate a consumer on their non-participation.

Once again the problem is a structural one. Since policy-focused boards are more likely to inspire conversations that are relevant to experiential knowledge, consumers will be better able to participate. Crucially, what tends to follow in these cases is more authentic encouragement, support, and feedback. Consumer members, like anybody else, will know when they have done a good job, when their comments have turned heads and generated dialogue. Feedback (indirect and direct) is likely to be more honest and therefore personally validating. In my research, a consumer member's feelings of personal validation about their performance on the board was fundamental to an ongoing sense of meaningful participation.

3. Representing direct services of the organization is constraining

I found that on management-focused boards, either formally or de facto, consumers tended to play the role of "service representative". This is a unique situation as far as community boards go, because board members are usually not allowed to benefit directly from the organization in any way. To do so has always been considered a serious conflict of interest. Exceptions to this rule appear to have been made in many mental health organizations because the value of participation apparently supercedes such concerns. But those concerns are real.

Rightly or wrongly, there was evidence that professionals felt that consumers were often self-interested when talking about the services of the organization that they also use. Combined with this perception is the fact that consumer board members could become quite constrained in their perceived role. On management-focused boards, it was the only area where consumers could readily contribute. Because consumer members understandably wish to contribute in some capacity, they would sometimes bring up items that were too operational even for the management-focused boards (e.g., individual issues with staff).

This ends up being a marginalizing position for an individual consumer member. Policy boards rectify this problem by simply removing operational issues, including direct service issues, from the agenda. Consumers instead broadly represent the interests of the consumer community as well as the organization itself, as an equal member concerned with overall governance. This does not preclude consumer participation on advisory committees or other similar groups external to the board that are assembled by staff or the board to gather input and information on specific issues regarding service delivery.

4. "Professional consumers": Two birds with one stone? Nope, you missed one.

Some have recommended the "two birds with one stone" approach. If boards can attract consumers who have professional credentials then they can "cover off" their representation requirements, acquiring expertise while also filling up a "consumer spot" on the board. The difficulty with this perspective is that you dilute the intent of the consumer role, which is to represent the needs of service users. If the priority of most mental health organizations is to support the most seriously disadvantaged people, it is difficult to imagine a "professional consumer" being able to authentically represent those needs.

In my research, I found that consumers who did not tend to draw on their own experiences (and use experiential power) also had skills in areas of professional expertise that they tended to use on the board. They also lacked strong, ongoing connections to the wider consumer community. In fact, two board members were a bit troubled by the label applied to them as "consumer member". This is not surprising, because it clearly conflicted with their perceived role and identity on the board as a professional.

Some non-professional consumers have become frustrated with the so-called "professional consumer" member, who will often not disclose their mental health history at first. In contrast, the former are fully disclosed, are explicitly "consumer members", and are on the board because of their first-hand experience with severe mental illness and the system. They ask, "how can my experience possibly be the same as our accountant who just recently announced they suffer from depression?" This is tricky. One never wishes to call into question the personal struggles of another individual, no matter how discrepant those struggles might be from the experience of people with severe mental health difficulties, and related problems like poverty and stigma.

We do, however, know the following. Consumer members who are also professionals usually bring professional skills to the table, not experiences. If they "fill up the consumer spots" on the board, there is a serious risk that the community being served is not being appropriately represented. It also means that expert power will hold sway more often than experiential power. I think it is good to have such individuals on boards. But I recommend that their appointment should not qualify as a consumer representative position, unless they are fully disclosed as someone who has mental health difficulties and has had significant experience with the system.

Moving to policy governance

At the time of this writing, many boards of mental health organizations, and non-profits in general, have been moving toward a greater policy focus in their governance. These changes come from a greater community awareness of "good governance" issues. Interestingly, these changes have not followed from a desire to enhance participation of consumer members specifically, but out of a concern with developing more effective boards in general. The effect of policy governance on the participation of consumers appears to be unexpected positive side effect - a win-win situation. These issues could also translate into many other contexts where average citizens take governance positions alongside professionals.

Moving to a policy-focus in governance provides a way to change board processes by changing the board structure. A change to board structure (its size, its purview, how it operates, what is discussed, what is not, and how) is a durable change, and potentially corrects a range of board problems that diminish meaningful participation. This change would appear to be superior to approaches that locate the problem in the individual member (e.g., consumer training) rather than at the level of the board itself. If citizens who have experienced mental health difficulties are better able to meaningfully participate in positions of organizational governance, an important piece in mental health system puzzle will be enhanced, contributing to improvements in supports, services, and overall community living.

For more information on this research, contact Jason Newberry at CCBR.

This short article is based on Newberry, D.J. (2004). The Meaningful Participation of Consumers on Mental Health Agency Boards: Experiential Power and Models of Governance. Unpublished dissertation. University of Guelph, Guelph, ON.

¹ Valentine, M.B. & Capponi, P. (1989). Mental Health Consumer Participation on Boards and Committees: Barriers and Strategies. Canada's Mental Health, 37, 8-12.

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