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All Aboard: Promoting Leadership Among Consumers and Families

Network, Fall 2006

According to Julie Flatt, a consumer of mental health services and senior manager of consumer initiatives with the Canadian Mental Health Association, National Office, the time has come for CMHA to step back and remind itself of the importance of consumer participation and leadership within the organization.

‘In the early 90s, consumer participation was right at the top of the agenda,’ recalls Julie. ‘Organizations like CMHA felt the need to have consumer participation, and they got it.’ In fact, in the 1980s, CMHA National struck a consumer task group that was charged with the mandate of creating a national consumer network (presently known as the National Network for Mental Health). ‘But,’ Julie explains, ‘over the years that impetus faded somewhat, often in the face of growing administrative pressures.’

With this in mind, CMHA National recently completed a project called ‘Back to Basics: Enhancing Our Capacity to Promote Consumer Participation and Inclusion.’ Julie describes it as ‘a refresher on consumer involvement and participation within our association. Its main purpose was to help CMHA branches, regions, divisions and national get back to the very basics of how to involve consumers and ensure their meaningful participation.’ The project wrapped up in March and created resources that are now available on CMHA’s intranet.

The impetus to promote greater consumer participation is not unique to CMHA. The Ontario Ministry of Health and Long-Term Care states that ‘clients and family members can and should play an active role in their own care and treatment’ (Operating Manual for Mental Health Services and Addiction Treatment Services, 2003). In addition, the ministry specifically mandates the participation of former clients and family members on the boards of all government-funded mental health agencies in the province.

Nevertheless, ‘the challenges remain the same as they’ve been for the past 15 or 16 years,’ says Julie. ‘They’re things like people feeling comfortable enough to join a board or a committee – having that confidence. Also, if they haven’t had the experience before, it can be quite daunting to get on one. And once you’re on, it can be overwhelming. That’s when a lot of people will drop out. So I think a major challenge is the confidence to get involved.’

The issue of confidence is no small matter. A person’s sense of confidence is often seriously shaken by the experience of mental illness. Not only can the illness itself undermine a person’s sense of identity and purpose, but the onset of illness can interrupt the course of knowledge and skill development. Mental health consumers may also face discriminatory attitudes and practices that work against them. Reclaiming a sense of confidence is a very important aspect of recovery.

In part, participating in branch programs can help consumers to establish a foundation of skills and with it, the confidence that can later encourage their pursuit of leadership opportunities.

‘At CMHA Peel Branch, we have a program called Speaking Out, which is an eight-week program that runs on an as-needed basis for consumers who want to develop their presentation and speaking skills,’ explains Executive Director Sandy Milakovic. ‘We also have a Helping Hands workshop that helps people develop their facilitation skills. And we have opportunities within our clubhouse for consumers to sit on committees like our personnel committee and take part in interviewing staff and in staff performance appraisals. So all of these things at a program level help to build leadership potential.’

Similarly, Alternatives, the social recreation program at CMHA Brant County Branch, provides some leadership training. ‘The focus is not directed specifically towards participating on our board but to leadership roles in general,’ notes Executive Director Peg Purvis. ‘However, in terms of consumers who’ve been on our board, I think most have been through this program.’

This was certainly Wayne’s experience. Now a consumer member on Brant’s board, Wayne explains that ‘Alternatives is for consumers and consumer-run. They take day trips, do crafts – basically anything that consumers want. They have their own executive dealing with the day-to-day operations, and my experience on their executive helped me to feel I could contribute to the board.’

Still, Sandy from Peel Branch notes that the route from program experience to board member cannot be assumed. ‘We need to find ways to help individuals who’ve pursued leadership opportunities through our programs to make the transition to board involvement once they are no longer receiving services. But one issue there too is that, once they are no longer receiving services, they want to get on with their lives and may not want that type of involvement.’

Like consumers, family members too may lack the confidence to join a governing board. Maryanne is a family member who’s now been on the CMHA Peel Branch board for a year. However, she came to it with some previous professional experience and notes that ‘family members who’ve never been on a board would likely need more education and encouragement so that they won’t feel intimidated to apply. The board may need to reach out more, rather than vice versa.’

The Ministry of Health and Long-Term Care recommends that mental health agencies take deliberate steps to ensure that clients and families are active participants. Agencies are encouraged to develop policies and procedures that promote consumer and family involvement. They should consult with clients and family members to identify ways to help them participate more fully. And they should establish formal and informal links with local networks or groups of individuals who can represent consumer and family interests.

According to Julie Flatt, ‘The first thing to do to attract consumers to your board is offer them a true partnership. Make sure consumers know that they are full partners and equal as opposed to tokens. Tokenism is one of the major problems that we still see at times. The organization must believe in the importance of consumer participation and the value they bring to the organization. They add legitimacy to whatever the organization does, and we have to recognize their importance and the right they have to be part of the decision-making process.’

At an operational level, Julie notes that simple meeting logistics can make a difference, ‘like the time of the meetings or the length of the meetings – sometimes they’re very, very long and it’s difficult for some to concentrate that long. Also, make sure there’s more than one consumer on the board and see that consumers have buddies so that someone can fill in for them if they’re away.’

Sandy adds, ‘We need to pay more attention to the out-of-pocket expenses that board members can incur and ensure reimbursement so that lack of money is not a barrier to involvement.’

Once on a board, all new members receive orientation and introductory training on board functioning. ‘All of our board members have the opportunity to attend a one-day training workshop to learn the principles, policies and procedures for governance,’ explains Karen Murphy, president of the Peel Branch. ‘In addition, we have an evening where we have the new board members come and review the policies and procedures and go through a mock board meeting to see how a board works.’

Mentoring is another approach to helping new members make the transition to a governance position. While Peel Branch has initiated a mentoring process to help new members through their first year on the board, Sandy adds, ‘We need to strengthen our mentoring and buddy system. It can be very helpful.’

‘Also, at the start of each board meeting, we have a ‘check in,” says Karen. ‘We go around the table and ask people to tell us how they’re doing either that week, or that particular day, and we can all be supportive for the person if they’re having particular challenges.’

‘For consumers, I think being on the board puts them on the road to moving forward,’ continues Karen. ‘And on a board like ours, they know they’re safe. They know they can share with us the problems or the challenges they may be having on any particular day and know that the board has the compassion, the insight and a lot of the expertise to help them if they are having trouble.’

‘There are always accommodations,’ adds Sandy, ‘but these are individual and are offered to all as needed. We use a document produced by the United Way called ‘Consumers on Board’ and we’ve found that very helpful as a resource.’

Still, the transition to becoming a board member may well require some specific skill building. Leadership development programs can help new members to bridge the gaps in their knowledge and experience. One example is the Consumer Empowerment and Leadership Training (CELT) program developed by the Mental Health Association of Virginia. CELT Leadership Academy is a four-day group training session designed to give mental health consumers important tools for successful leadership and the skills to make their voices heard. Similar programs have been operating in the U.S. for a number of years now, and studies indicate that they work. Not only can they help consumers to learn necessary skill sets for advocacy and leadership, but they can also promote an improved sense of self-esteem and confidence.

The value of consumer participation to the board and consumer alike cannot be underestimated. In terms of system impact, Peg Purvis notes that ‘consumers’ perspectives on service issues are particularly unique and assist in informing board decisions that are grounded in real experience. And consumers will sometimes question directions taken, not only by the organization, but maybe too by the ministry, and so really help direct us in our advocacy efforts around mental health reform.’

Family members too offer unique contributions to the organization and its advocacy efforts. ‘When we met with our local MPPs,’ explains George, a family board member with CMHA Windsor-Essex County Branch, ‘I think the value of my presence was to tell the story of my son and illustrate the importance of having the right services in place, and that’s the kind of thing CMHA can do. Being a board member and a family member allows me to bring a special perspective to issues like these, and I think it’s appreciated.’

Consumer and family participation also allow for unique spinoff effects in the community. For example, George continues, ‘Being a family member on the board allows me to connect with the rest of the community in an important way. It allows me to tell my story and it creates a dialogue. When I’m chatting with people, they ask what I’m up to and I tell them I’m on the CMHA board. When they ask ‘why,’ I’m able to tell my story. And then, so many people have their own story to tell. It opens up the door. I find so many people with friends and relatives with mental health issues. Talking about being on the board is the catalyst to opening up discussion with others in the community.’

For the consumer, ‘I think being on the board can help consumers with their self-esteem, it helps them to do other things in the community,’ comments Karen Murphy. ‘It shows them that even though there are challenges there is hope and they can move forward and they can even help others in this situation.’

Julie knows this only too well. She puts it this way: ‘Recovery is very important. And it’s very important as part of our recovery to be part of the decision-making process.’ The Back to Basics project serves as an important reminder of this basic fact.

Wayne, now entering his fifth year of service as a consumer member of the CMHA Brant board, agrees that participating is empowering. ‘I wanted to try to make a difference in my life and pass on what I’ve learned to others,’ he says. ‘Also, it’s a learning experience for me. I’d never been on a board. I really truly enjoy it. I’ll be going into year five in September. I’ve met a lot of nice people. They’re from all different parts of the community, representing a range of professions and interests. I also sit on the personnel committee, which is very rewarding. It gives you an idea of the day-to-day operations and challenges of the branch. I strongly encourage consumers to get involved.’

Elizabeth Lines is a researcher/writer in areas of health and social issues.


LEADERSHIP DEVELOPMENT RESOURCES

Accountability Supports for Addiction and Mental Health Providers (2006)
Developed by the Ontario Federation of Community Mental Health and Addiction Programs, this document includes a section on the Ministry of Health and Long-Term Care’s mandatory requirement that ‘Mental health agencies must have former clients and family members on the Board of Directors.’

Back to Basics: Enhancing Our Capacity to Promote Consumer Participation and Inclusion (2006)
Tools designed for CMHA branches and divisions to enhance the association’s capacity to promote recovery and enhance the meaningful participation of consumers throughout the organization. Available to CMHA Branches and Divisions.

Board and Committee Survival Handbook (2003)
Published by the CMHA Consumer Development Project, Kelowna, BC, this handbook provides support and practical guidance for people with mental health problems who sit on a board or committee.

Consumers in Action handbook series (2002)
This series of handbooks was developed as part of a joint project conducted by the National Network for Mental Health and Nova Scotia’s Self-Help Connection. The project was intended to enhance the capacity, advocacy and leadership skills of mental health consumer/survivors.

Consumers on Board: The Effective Participation of Consumers on Boards of Directors (1996)
Written by Joanne Nugent and published by United Way of Peel Region, Consumers on Board is a guide to consumer participation on boards of directors. Out of print, but may be available at public libraries or local United Way offices.

A Good-Practice Guide to Valuing, Respecting and Supporting Service-User Activity (2006)
Published by Together, a UK mental health charity, this guide focuses on issues of payment and volunteer compensation, evaluation, accountability, safety and support, mediation, employment, ownership and independence.

Involving Consumers on Boards (2002)
This Issue Brief published by the Center for Medicare Information explores how best to recruit and keep consumers on an organization’s board.


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