Consumer/Survivor Initiatives

1. Consumer/Survivor Initiatives Defining the movement, sharing the benefits

2. Brief History of CSI’s Over the past two decades CSI’s have evolved to become invaluable community supports in all areas of service delivery, district, regional and provincial planning, the implementation and evaluation of community mental health programs. By its very nature peer support and self help organizations allow intervention opportunities that are uniquely supportive in the delivery of peer support within the community mental health continuum. As organizations CSI’s are characterized by the following: • Democratic organizational models • Focus on non-clinical models such as self help and advocacy, consumer/survivor directed skills training and economic development • Regional focus • Recognition and outreach to francophone community • Outreach to various ethno cultural populations The 1970-80’s saw the beginning of a new vision for mental illness recovery through community support. Part of this new vision was the belief that consumers (those with direct experience within the mental health system) could support one another and create changes in their communities and the system as a whole. In Ontario funding was directed to the first CSI in 1991. By the middle of June 1991, funding decisions had been made, supporting 42 programs across Ontario. In 1996 the government released new monies that led to the formation of 24 additional CSI’s

3. Value of CSI’s CSI’s contribute to reductions in the use and cost of services – including community mental health programs, hospitals, psychiatrists and general practitioners, income supports and other services. CSI’s provide a natural network of peers and friendships, reducing the social isolation that is often a significant factor in relapse. CSI staff and volunteers serve as models. They demonstrate the unique value of having “been there” and thriving since. CSI’s are based on empowerment, peer advocacy and peer support. They are “a system of giving and receiving help founded on key principles of respect, shared responsibility, and mutual agreement of what is helpful.” (Mead, Hilton and Curtis, 2001) For many mental health consumer/survivors, a CSI is often the first place in their lives they feel they are in control of what happens to them. CSI’s play a critical, yet undervalued, role in Ontario’s mental health system. Studies have proven that CSI’s support people in recovery and reduce their use of hospitals, crisis and other expensive services. CSI’s represent a way to both ease and enable people’s transition from formal mental health services back into the community. CSI’s are run for and by people with mental health problems and/or those who have received mental health services. CSI’s embody the principles of inclusiveness and recovery…CSI’s contribute to desired outcomes by supporting people in their recovery so that they have less need for formal mental health services. Consumer/Survivor Initiatives: Impact, Outcomes and Effectiveness, 2005

4. CSI’s in Ontario CSI’s are self help/mutual aid organizations that have been developed exclusively by and for people with mental illness. CSI’s are guided by a set of values that include member empowerment and participation, social justice, sense of community and peer support, and mutual learning. CSI’s also participate in system-level activities. While individual-level activities focus on supporting individuals directly system-level activities work to create environments that are more supportive for people who have experienced mental health challenges. The four main system-level activities are: public education and relations, political advocacy, community planning and collaboration and action research (A Longitudinal Study of Consumer/Survivor Initiatives in Community Mental Health in Ontario, 2004) There are between 50-60 CSI’s funded through the Ministry of Health and Long Term Care Despite the policy, evidence and popularity of CSI’s, only 0.2% of the total mental health budget for Ontario is invested in them, the same as it was in 1991. Growing evidence base on peer run initiatives like CSI’s demonstrates that they reduce hospitalization and ‘symptom’ distress as well as increase quality of life and social networks. CSI’s in Ontario are proving their worth and could be well be the fastest growing type of service in mental health systems throughout the world over the next 20 years. (Consumer/Survivor Initiatives in Ontario: Building for an Equitable Future, March 2009)

5. CSI Areas of Focus Consumer/survivor models tend to put more emphasis on peer support, empowerment and real-world personal experience. “The focus is on wellness and not illness, on ability and not disability, on becoming at ease with one’s limitations and not remaining diseased within one’s limitations, on focusing on the beginning of the recovery process ... It is about gaining the energy to have choice once again and setting about to plant the seeds of choice to enable the consumer/survivor once more to feel alive.” (Joan Edwards-Karmazyn) “It really does help to be able to talk to people who understand what you are going through and won’t judge you. They may have some suggestions that worked for them in similar situations in the past that you may want to try. It’s imperative to have a safe place to be able to talk openly about how you feel.” (Anonymous) Developing and maintaining self help groups and offering peer support Developing and operating small community based businesses Providing education, sensitization and training to the public and mental health professionals Advocating for better mental health and related social services Providing opportunities for skills development by consumer/survivors Creating and distributing resources based on the knowledge of consumer/survivors Pursuing artistic and cultural activities Providing safe environments for members to learn and grow Providing social and recreational opportunities

6. What People Are Saying The recovery approach looks at the whole person and defines the person positively, focusing on their strengths and goals, rather than their illness. Recovery is a personal journey, a social process, and a driver to fundamentally transform the existing mental health system. The goal is to help people with a mental illness and/or addiction gain or regain their role in society. The recovery approach emphasizes: self determination and self management to attain personal fulfillment, meaningful social and occupational roles and relationships within the community and measuring outcomes in terms of housing, education, employment and participation – not just reducing symptoms. Person-directed services have the potential to transform the mental health and addiction system and develop new approaches to care and support. (Every Door is the Right Door, Towards a 10-Year Mental Health and Addictions Strategy, July 2009) “I learned more from my peers than I did in the previous 12 years dealing with what I call the “formal mental health system”. I learned by listening to how others kept themselves well and what they did to maintain their mental health. I tried some of their methods and some of them worked.” (Jean-Pierre Galipeault) “I learned through volunteer opportunities that I had a natural ability to talk with and listen to other mental health consumers, and we all seemed to benefit from that…This was a dream that I never believed could happen. In 2001, I was offered a job at the Consumer Initiative Centre, a program of the Self-Help Connection, an organization built on the power of peer support. I was hired as a peer support worker.” (Roy Muise)

7. Engaging People People with lived experience, their families and communities have valuable skills and knowledge that can strengthen the system. When people with lived experience become partners in governing, planning, delivering and evaluating services, they can help develop effective services that meet needs. They also develop valuable skills that may help them gain work and participate more fully in their communities. People with lived experience also need opportunities to participate in peer-based programs, initiatives and collectives – both paid and voluntary. Peer-based services can make a significant difference. People with mental illnesses who actively participate in CSI’s are less likely to use emergency rooms or inpatient services, more likely to report better social support and quality of life, and more likely to stay in a job or school than those who do not. Peer networking among people who use drugs improves health outcomes and reduces harms and risks of drug use by sharing health information and providing support. Social support and good social relations – friends and family – are good for health. People who are part of social networks feel cared for, loved, esteemed and valued. Being “part” of society – feeling included – has a protective effect on health. Participating in volunteer work, paid work and recreation activities help people feel socially included and become more resilient. Communities that provide opportunities for people to be involved and to contribute to society help nurture a healthier population… Every Door is the Right Door Towards a 10-Year Mental Health and Addictions Strategy, July 2009

8. What CSI’s are Offering “Peer Support is a naturally occurring, mutually beneficial support process, where people who share a common experience meet as equals, sharing skills, strengths and hope, learning from each other how to cope, thrive and flourish. Formalized Peer support begins when persons with lived experience, who have received specialized training, assume unique, designated roles within the mental health system, to support an individual’s expressed wishes. Specialized peer support training is peer developed and delivered, endorsed by Consumer/Survivor Initiatives, Peer Support Organizations and Patient Councils, and is rooted in principles of recovery, hope and individual empowerment.” Self help groups Peer support and peer supported recovery Recreational activities Social activities Educational programs Paid work and volunteer opportunities Outreach to community and hospitals Programs for artistic expression, visual arts, written word, music Life skills programs Community based research Educational presentations to health professionals Community development Operating small businesses Personal and systemic advocacy All programs are based on the needs of the members in each CSI

9. What is Mental Health Recovery? Recovery is not the same thing as being cured. Recovery is a process not an endpoint or a destination. Recovery is an attitude, a way of approaching the day and facing the challenges. Being in recovery means recognizing limitations in order to see the limitless possibilities. Recovery means being in control. Recovery is the urge, the wrestle, and the resurrection. Recovery is a matter of rising on lopped limbs to a new life. Recovery is not a linear process marked by successive accomplishments. The recovery process is more accurately described as a series of small beginnings and very small steps. Professionals cannot manufacture the spirit of recovery and give it to consumers. Recovery cannot be forced or willed. However, environments can be created in which the recovery process can be nurtured like a tender and precious seedling. (Consumers of mental health services) persons must be willing to try and fail, and try again. (Deegan, 1988) CSI’s foster an environment of recovery. Recovery is not tied to symptom relief, re hospitalization, etc., they are part of the recovery process. Recovery includes recovering from stigma; institutionalization; the effects of poor/wrong treatment/interventions; lack of opportunities for self-determination; social and community access and interactions; the effects of unemployment, misconception about mental illness; and crushed dreams.

10. Consumer/SurvivorComments “I have more power in terms of taking control of my own life and I think that (CSI) put that step forward.” “When we do speak, please do not avoid us. What we have is not contagious.” “What do people need? Friends, family. Everyone needs someone to help them. Because we are all human beings, we all have problems. The key is to have sensitive people to talk to about our problems.” “I have a doctorate in lived experience, and I bring that experience to the table.” “I was never told that I could learn how to relieve, reduce and even get rid of troubling feelings and perceptions. Perhaps if I had learned these tings and had been exposed to others who were working their way through these kinds of symptoms, I would have not spent weeks, months and years experiencing extreme psychotic mood swings…” Mary Ellen Copeland “Overall I just feel better. I don’t feel hopeless around and unsure of what to do now. Before it felt like I had no options and I’m trapped.” “I felt isolated, I didn’t have any contact with peers who were going though the same situation…It does make quite a difference for an individual to contact his peers and go through what they have gone through and give each other support.” “Participation in CSI helped a lot. In other parts of my life there is nothing there. I am not working. I don’t have a family of my own or anything like that. I was very isolated at the time so it helped me socialize. Having things to do and places to go and meeting people (started to be) a part of my daily schedule.”