Kirby Presentations

May 25, 2005
Presentation to the Standing Senate Committee on Social Issues, Science and Technology

Name: Horst Peters, Program Coordinator
Organization: Partnership for Consumer Empowerment Canadian Mental Health Association, Manitoba Division

Honourable Members of the Senate

Thank you for the invitation to present here today. Unfortunately, due to the rescheduling of these hearings, I am unable to attend personally, but have asked Mr. Jason Turcotte, a colleague from the Canadian Mental Health Association office in Portage la Prairie to represent me here today.

In your report of November 2004, entitled Mental Health, Mental Illness, and Addiction; Issues and Options for Canada, you have identified numerous important issues and related questions. It is my intention to address a small number of these issues and questions based on information learned and opinions formed through the past, current, and planned work of Partnership for Consumer Empowerment (PCE), a program of the Canadian Mental Health Association, Manitoba Division and funded by Manitoba Health.

Program Background

Partnership for Consumer Empowerment (PCE) is a provincial program working towards the vision of a society where all people living with mental health challenges in Manitoba have the knowledge, skills, resources, supports, and opportunities they require for their recovery; and for meaningful participation in the planning, delivery, and evaluation of mental health services. If I could add a subtitle to the vision it would read, “From psychiatric patient to agent of change”.

PCE grew out of the need for an educational program defining the principles of empowerment and recovery, and the potential impact of these concepts in peoples' lives. To this end, the Manitoba Provincial Advisory Committee for Mental Health Reform initiated the development of a consumer empowerment program in 1993/94; to be developed and delivered by consumers of mental health services. Originally a program of the Mental Health Division of Manitoba Health, the program has evolved into a community-based initiative, providing workshops throughout the province of Manitoba as well as consultation, advocacy, and other support services.

In December, 1993, the Provincial Advisory Committee on Mental Health Reform, including representatives of all Regional Mental Health Councils, adopted a series of recommendations regarding the involvement of self-declared mental health consumers within Manitoba's mental health system aimed at:

▪          Including consumers and their families at decision-making levels;

▪          Providing financial support to facilitate their participation;

▪          Developing educational strategies to facilitate their involvement;

▪          Hiring consumers as paid consultants;

▪          Utilizing consumers/family members in public education and community development;

▪          Creating positions for consumers as service providers;

▪          Updating professional educational curriculums to involve consumers/family members;

▪          Developing personal self-esteem for all training programs of human service professionals;

▪          Targeting current service providers for education on mental illness and consumer empowerment;

▪          Encouraging agencies to develop strategies for support for their workers.

On March 4, 1994, the Provincial Advisory Committee approved an implementation strategy for consumer empowerment in order to achieve the intent of the recommendations. A Consumer/Family subcommittee, chaired by the Consumer Consultant to the Mental Health Division of Manitoba Health, was established to:

▪          Develop a listing of current consumer participation activities;

▪          Identify potential opportunities for participation;

▪          Develop a syllabus of a two-day in-service with an appropriate bibliography;

▪          Develop a speakers list of consumers and family members;

▪          Develop a feedback mechanism to evaluate the impact of these activities.

The subcommittee in turn, established a Working Group of consumers and family members which proceeded to develop the Consumer Empowerment Workshop Resource Package. The resource package outline was presented to the Provincial Advisory Committee in October 1994, at which time the committee approved the recommendation that workshops on the philosophical basis of mental health reform and consumer empowerment be conducted for:

▪          The boards and staff of all community based organizations/agencies, including self-help groups, being funded to provide mental health services in Manitoba;

▪          All hospital based psychiatric staff, including nurses, social workers, physicians, etc.;

▪          All mental health staff, including itinerant support service workers (proctors), community mental health workers, case managers, crisis support workers, etc. in all regions;

▪          All students in human service professions, e.g. nursing, medicine, occupational therapy, social work, etc.

In keeping with the principles of consumer empowerment, the workshops were to be delivered by consumers and family members.

From 1994 to 1997, Catherine Medernach, a consumer consultant with the Mental Health Branch of Manitoba Health, delivered the Consumer Empowerment workshops with the assistance of several other persons. The Consumer Empowerment workshops were identified as a “Best Practice” in the 1997 document, “Best Practices in Mental Health”.

Following the regionalization of health services, Manitoba Health contracted with the Manitoba Schizophrenia Society Inc. to host the Consumer Empowerment program in January, 1998, at which time it was renamed as the Partnership for Consumer Empowerment. The mandate was altered to make the program more flexible and sensitive to the time constraints and educational needs of various audiences. The target audience was expanded to also include consumers, family members, employers, residential care providers, faith groups, etc. I was hired as program coordinator on February 2, 1998.

In the spring of 2001 Manitoba Health began the Manitoba Mental Health Education and Empowerment Initiative, which involved the creation of the Mental Health Education Resource Centre (MHERC). The PCE program became part of this Initiative. Both programs were overseen by an Advisory Committee, and were hosted by the Manitoba Schizophrenia Society, Inc.

According to the Terms of Reference, defined by Manitoba Health, the purpose of the Initiative was to:

1.       Improve understanding of the principles of empowerment and recovery, and the impact of these concepts for consumers, family members, friends, and service providers;

2.       Increase awareness of the consumer role in their recovery;

3.       Promote mental health, and educate about mental illness in an effort to encourage Manitobans to seek treatment early and to reduce the prejudice and discrimination that exists towards people with a mental illness.

The same Terms of Reference redefined the purpose of PCE to be:

1.       Improve understanding of the principles of empowerment and recovery, and the impact of these concepts for consumers, family members, friends and service providers.

2.       Increase awareness of the consumer role in their recovery.

3.       Build consumer capacity and participation.

On October 1, 2004 PCE and MHERC became programs of the Canadian Mental Health Association, Manitoba Division. With the move to CMHA the PCE program continues to evolve in both services offered as well as mandate. Manitoba Health clarified the goals of PCE to be:

1.       To increase awareness of the consumer role in recovery.

2.       To build consumer capacity and to increase consumer participation in the planning, development, delivery, and evaluation of mental health systems, services, and programs.

3.       To serve as a centre of technical assistance and expertise to persons and organizations across the province.

Service activities include:

1.       Workshops to consumers about:

a.       Recovery.

b.       Skills building for participation.

2.       The development and delivery of train-the trainer materials and workshops.

3.       Working with other Self Help groups to coordinate and facilitate such activities.

Program Activity and Outcomes

Since February of 1998, more than 270 workshops and presentations have been delivered to more than 7500 people throughout the Province of Manitoba as well as in Vancouver, Surrey, and Kelowna, B.C.; Olivia, Minnesota, and Atlanta, Georgia. At this moment I am enroute to Montreal to present a recovery workshop at the National Conference of the Schizophrenia Society of Canada.

Recovery and Empowerment workshop participants have included mental health service providers, psychiatric nursing students, bachelor of nursing students, social work students, health and physical education students, high school students, family physicians, consumers and consumer organizations both in the community and in hospitals, family members, chaplaincy residents, residential care providers, home care staff, employment and income assistance staff, City of Winnipeg staff including the Winnipeg Police, Probation and other Justice Service staff, church groups, and more. A number of organizations have made these workshops a component of their staff training, including the Winnipeg Regional Health Authority. The University of Brandon, School of Health Studies has made this workshop a component of their Bachelor of Psychiatric Nursing Curriculum.

The long-term impact of these workshops/presentations is difficult to measure since the program lacks the financial and human resources to do evaluations of this nature. Nevertheless, there are indicators of outcomes. For example: at the conclusion of a recent talk on the consumer role in recovery to inpatients on a psychiatric ward, a young person that has been in and out of hospital and crisis units for several years remarked, “I’m going to stop waiting for my medications to make me better. I’m going to start doing something so I get better.” Another example is an email I received recently from a young person currently working as a nurse on a psychiatric in-patient unit. This individual, who had attended a recovery and empowerment workshop as a student is distressed by the use of seclusion rooms to manage patient behaviour; believes this practice is contrary to the principles of recovery and self-determination, and is looking for literature and suggestions to assist her to develop a strategy to change this practice. A third example is that of a young man, diagnosed with schizophrenia and now employed as a mental health support worker, who approached me at a recent mental health event and stated that the recovery message that he heard at a PCE presentation on a psychiatric inpatient unit several years ago had sparked the hope and desire in him that started him on the path to his recovery and current employment.

To address the mandate of consumer capacity building, PCE sponsored 6 persons to participate in the Consumers in Action facilitator training delivered by the Self-Help Connection of Nova Scotia and the National Network for Mental Health in April 2004. This spring (2005) PCE will complete the development of several learning programs for consumers (to be delivered beginning September 2005) including:

▪          Board and Committee participation training for mental health consumers.

▪          Know Your Rights: exploring the impact of legislation such as the Mental Health Act, the Health Care Directives Act, and the Personal Health Information Act on persons living with a psychiatric disorder.

▪          Participating in your treatment planning; strategies for personal empowerment and self-determination.

▪          Telling Your Recovery Story: an opportunity for personal growth, healing, and an inspiration and role model for others.

 At least five (5) former volunteers in the PCE program have found permanent, full-time employment in the mental health field. 

PCE is a participant in the development of a National Consumer Coalition, initiated by the National Network for Mental Health earlier this year. A goal of this coalition is to strengthen the consumer voice across our country and to enhance the full participation of consumers at all levels of mental health and related service design, delivery, evaluation, and the development of standards and policies.

PCE is currently involved in assisting a number of organizations in their policy and practice review as well as accreditation processes. For example, Selkirk Mental Health Centre, the provincial Psychiatric Hospital has been conducting a review of all program activities throughout the Centre to assess whether or not these activities facilitate and support recovery. At the suggestion of PCE, the review process has included the review of charting practices, with the intention of encouraging the inclusion of patients’ perspectives of activity and behaviours in this process. In other words, the reporting of patient progress is to be more than the subjective observation and opinion of the staff person and should include the person’s opinion/perception of their progress/behaviour. Such a practice is consistent with the principles of a person-centered approach. 

A highlight of PCE activity has been the production of the short film, “Inside Out”, a performance piece written and performed by Winnipeg artist Nigel Bart. The primary participants in this production process were consumers of mental health services or family members. The film has proven to be a dynamic, powerful, and challenging educational tool. The former Minister of Health in Manitoba, the Honourable Mr. David Chomiak valued this production enough to place a copy of the film with every school superintendent in this province, and has encouraged and promoted its use as an educational tool about schizophrenia, stigma, and recovery. A number of copies of the film have been distributed across Canada as well as into the United States.

Copies of the film have been made available to this committee as well as a copy of the video brochure which includes the script of Nigel Bart’s monologue.

Response to the Senate Committee Report of November 2004

Mental Health, Mental Illness, and Addiction; Issues and Options for Canada

This brings me to my responses on the issues and questions raised by this committee in the November 2004 report. For the sake of brevity and ease of reading I will address these in point form.

Chapter 1; Delivery of services and supports

Issue: Patient / client centered services:

A client/patient centered system requires the establishment of clear, definitive standards and policies. These must make it abundantly clear that nothing less than a person centered system of services and supports is acceptable. These standards and policies must be entrenched at all systemic levels from federal, provincial, regional and down. These policies and standards must include clear, measurable descriptions of client centered system and service outcomes. Furthermore, systems, services and supports must be held accountable for operating from a client centered approach. It is essential that users of mental health services are included at all levels of the development, implementation, and evaluation of these standards and policies.

Issue: System coordination and integration with strong focus on community based delivery.

            Committee question: How can the burden of coordinating and integrating services and supports be shifted to the system itself and away from affected individuals and their families? In my opinion this is the wrong question. I believe the more important question is how can the system eliminate the barriers to individuals and families navigation of service options, coordination, and integration? It is my opinion that a focus on shifting the coordination and integration of services raises the risk of more systemic and professional control and management and less client choice and self-determination. Let me suggest that a better solution, one that is consistent with a client centered approach lies in eliminating barriers to service and support/resource access, and educating consumers and families in the skills of accessing, coordinating and integrating services.

            Question: What incentives are needed to overcome the difficulties associated with getting existing organizations to work together? Address the current funding realities that often pit organizations against one another for the limited dollars available. Establish funding incentives for partnerships and service collaborations; however, refrain from instituting punitive funding policies for stand alone organizations/services.

            Question: How can duplication of services offered by NGOs be eliminated? Do not create monopolies or take away from consumer choice/options. What appears as duplication of services provides people the option of choosing services whose various subtleties provide them with the opportunity to choose services and service providers who best fit with their desires, goals, needs, and personalities. This approach supports the principles of a client centered approach and self-determination.

Chapter 3: The Workplace

Issue: Federal Income Security Programs

            Question: Should the federal government change the CPP(D) in order to provide partial or reduced rather than full benefits, to enable individuals with mental disorders to retain a portion of their benefits while still working part-time?  The all or nothing approach must be eliminated. To provide benefits only to someone while they are 100% disabled is discriminating, disempowering, and a disincentive to recovery. People with psychiatric disabilities, and all other disabilities for that matter, require the opportunity to gain or regain skills, confidence, physical and emotional strength and stamina, and to establish a stable personal economic foundation. A policy of reduced benefits along with the 100% retention of part time employment income will enhance the recovery of persons with mental disorders.

            Question: Should CPP(D) staff members receive training to increase their awareness of mental addiction? Yes; and that education must include training to increase their understanding of what helps people recover and the barriers to recovery!

Chapter 4: Specific Issues

Issue: Stigma

            Question: Has the word stigma become a polite linguistic way of justifying discriminations? Yes! It is much softer than prejudice, discrimination, social ostracism, and second class citizenship which are the markers of what we politely refer to as stigma.

            Question: Is there a role for the media in trying to change Canadians’ attitudes towards individuals with mental illness and addiction? Media must change its attitudes, principles and values (if they even have them), and policies before they can change Canadians’ attitudes. Media has played a major role in the establishment and maintenance of the current environment of prejudice, discrimination, social ostracism and second class citizenship faced by persons with mental disorders and addictions.

            Question: Are there public awareness strategies that have been particularly successful in Canada to reduce stigma and discrimination from which lessons can be learned? The most successful strategy is that of consumers telling their stories – their illness experience as well as their recovery story!

            Question: Should Canada create an Ambassador Bureau composed of individuals with mental illness and addiction who would be trained to speak to the media and employers about their experience?  Yes, and the audience should be expanded to address all of Canadian society! Furthermore, these individuals (speakers) should be paid well for their contribution to the education of Canadians!

            Question: Should the federal government, working jointly with the media, develop a national mental health strategy to teach journalists how to report in ways that do not stigmatize individuals? Yes – and use persons with mental disorders and addictions as educators, paying them well for their expertise!

            Question: What can governments do to increase everybody’s awareness that mental health is as important as physical health to the well-being of Canadians and that, as a corollary, the delivery of services and supports for mental illness and addiction is as critical as is the provision of health services for physical conditions?

1.       Develop a National Action Plan.

2.       Publicize the cost of mental disorders and addictions and its impact on our economy, employers, families, and health care system.

3.       Priorize mental health in health care through the use of effective standards and policies.

4.       Support the development and growth of consumer organizations / networks / coalitions. Ensure they are funded adequately to engage in public education and awareness raising as well as the development of persons with mental disorders and addictions to participate in this work.

Chapter 5: Human Resources

Issue: Supporting Caregivers

            Unless I missed it, the report fails to recognize the need for families and/or other natural supports to work through their own parallel recovery process. Families require support and education resources to aid them in this journey of recovery from their losses, shattered dreams and personal pain.

Chapter 6: National Information Database, Research and Technology

Issue: Research

            Existing research funding seems to be directed primarily at clinical / biological/ genetic research.  What is required is increased funding for research into the environmental, social, psychological, and spiritual dynamics of recovery from mental disorders and addictions. The Knowledge Resource Base detailed in the New Framework for Support published by the Canadian Mental Health Association provides an excellent foundation and justification for this type of research.

            Persons with mental disorders and addictions need to have a prominent place and influential voice in the development of a National Research Agenda

Chapter 7: The Role of the Federal Government

Issue: National Action Plan

            We need a National Action Plan on Mental Health and Addictions in Canada. The federal government must define the values, principles, and standards for person/client centered, recovery-oriented mental health and addiction service and support systems. The government must implement an accountability process that defines, measures, and holds systems and services accountable for quality and effectiveness of service. The bottom line is:

1.       Are persons with mental disorders and addictions recovering?

2.       Are persons with mental disorders and addictions participating as full and equal citizens in Canadian society?

3.       Do persons with mental disorders have a prominent and influential voice at all levels of service / support system design, delivery, and evaluation.

I conclude with the ‘mantra’ of the psychiatric consumer / survivor / ex-patient movement for more than the last 30 years:

“Nothing about us without us!" 

Thank you

Horst Peters

For further information or clarification please feel free to contact me at:

hpeters@PCEmanitoba.com
 

June 6, 2005
Senate Committee Hearings - Vancouver BC

Name: Susan Friday
Organization: Vancouver/Richmond Mental Health Network

Preamble: I agree that we need a national action plan on mental health, mental illness and addiction, a plan that would mandate the federal government to devote a specific portion of its transfer payments toward mental illness and addiction. Maybe we can learn something from Australia. And I believe that Canada needs a Mental Health Act - one that would include a Charter of Rights, whereby a recovery orientation should drive service delivery.

I speak of “recovery” in a sufficiently wide context, to include recognition of the social, psychological, biological, environmental and economic factors - and the holistic, alternative pathways toward healing that represent freedom from an oppressive corporate drug culture, one that reinforces consumer/survivor dependency on the psychiatric status quo.

The status quo is not an option.

As I think of specific populations across Canada, and the three reports issued by the Standing Senate Committee, it is clear that we need to include gay, lesbian, bisexual and transgendered populations within a national policy framework. The statistics on rates of prevalence make this abundantly clear. The annual economic cost of mental illness and addictions resulting from homophobia, bi-phobia and transphobia cannot be ignored.

For Canada to be a true leader in the international community, I think it’s obvious That we all belong, that we are essentially one family.

I also think that the issue of women-specific supports is very important. The time is now. It is time for a women’s mental health strategy in Canada. Women use mental health services more frequently than men - and the causal factors for this have been researched and must be recognized. Women are almost twice as likely as men to experience depression and anxiety.

A comprehensive national action plan must address the realities of violence, abuse, poverty, ethnicity and addictions. In closing, I’d like to add that one of the alternatives we very much need is more safehouses in Canada, places where women can obtain positive help in overcoming a crisis.

Thank You.