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SECTION 15 TABLE OF CONTENTS

ADVOCACY 15.1 15.2 15.3 15.4 15.5 15.6 15.7 Background Definition and Types of Advocacy Why Do We Need Advocacy? What is the Vision for Advocacy? Integrating Advocacy into the Northeast Mental Health System Recommendations References 522 522 523 524 525 529 536 538

FIGURES 15.1 15.2 The Consumer-Centred Recovery Focused Context Outline of Mental Health System Structural Components Including Advocacy TABLES 15.1 Roles and Responsibilities Related to Advocacy 532 533 526

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SECTION 15: ADVOCACY


15. 1 Background

The advocacy function is an essential and integral component of a reformed comprehensive mental health system. While the framework for a continuum of mental health services, outlined in Making It Happen: The Operational Framework for the Delivery of Mental Health Services and Supports (1999), does not describe or define the advocacy function, it does specifically refer to advocacy under: Consumer Initiatives (p. 26) Family Initiatives (p. 45) Mobile Outreach Teams with respect to client advocacy (p. 37) Crisis Services with respect to client-centred advocacy on behalf of and with clients and families (p. 48) Intensive Case Management with respect to coordination and support (p. 52) as well as systemic advocacy and coordination (p. 53) Advocacy efforts, both formal and informal at the provincial and local levels exist, however, they are not coordinated or integrated. Mechanisms to address this fragmentation are not in place; there is a lack of a provincial framework, umbrella organizations, training for advocates, standards of practice, and an accountability framework for advocacy. Advocacy must be recognized and supported as a essential service element in the reformed system of care. The role of advocacy is central to an effective mental health system. While recognizing that both the formal and informal mental health system are involved in advocacy as referenced to in Making It Happen, there has been no formal examination of these capacities within the Northeast. The purpose of this chapter is to lay the groundwork for this system capacity to be developed as local reform moves ahead. The chapter will Articulate a vision, values and principles with respect to advocacy. Define advocacy and describe types of advocacy and its activities. Identify directories and other resource information concerning existing organizations and coalitions/networks related to advocacy.

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Explore the role of advocacy in the future and how it should relate to a revised mental health structure in the Northeast.

Present strategies for the organization/coordination of advocacy efforts.

15. 2 Definition and Types of Advocacy

Advocacy is a process of defending or promoting a cause on behalf of oneself and/or others.

Advocacy efforts are multifaceted and occur at a number of levels. There are essentially two main levels of advocacy: Individual level and systems level. The following types of advocacy have some unique features but also overlap and complement each other: Self Advocacy is the process of an individual advocating on his or her own behalf to resolve individual issues. Individual Advocacy is a process whereby one person works with and/or represents the interests of another. Collective Advocacy is defined as the involvement and action by a voluntary group/network/coalition to promote its needs and rights. Collective advocacy focuses on common issues rather than individual ones. The distinction here is the voluntary rather than the professional nature of the group. Agency Advocacy (sometimes referred to as Professional Advocacy) is the process of involving various stakeholders by an agency or professional in identifying and overcoming barriers and planning for change. System Advocacy is the process of advocates promoting policy and system change to address systemic causes of problems.

Rights Advice, as required under the Mental Health Act and its regulations, is another type of advocacy whereby patients in psychiatric facilities and persons to be placed on community treatment orders (CTO) and their substitute decision-maker, if any, are informed of their rights when a doctor changes an individuals status to involuntary, renews his/her involuntary status,

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finds him/her incapable to make treatment decisions or to look after finances, or finds him/her incompetent to either look at their clinical record or consent to someone else looking at his/her clinical record, or intends to place an individual on a CTO.

15. 3 Why Do We Need Advocacy?


As one of the key characteristics of the recovery-oriented mental health system, advocacy brings the clients perspective to the attention of policy makers, funders, and service providers; it has a key role to play in promoting: A holistic understanding of the people served; Opportunities for individuals with mental illness to participate in community roles; and An understanding of the recovery potential of people served. (Anthony, 2000)

The negative consequences of a diagnosis of serious mental illness are far reaching and can lead to a downward spiral of deterioration characterized by isolation, victimization, poverty, unemployment, poor general health, lack of adequate housing, and homelessness. In addition to these disadvantages, the vulnerable client confronts a multitude of barriers, such as: Stigma and discrimination Inequitable distribution of power and resources Lack of public understanding of mental illness Ability/knowledge on how to access information and support Lack of links to natural supports

In a recovery-oriented approach based on hope, healing, empowerment, and connection (Jacobson & Greenley, 2001), advocacy plays a key role by, for example: Promoting and protecting the rights of individuals in the service system; Providing equal opportunities for individuals with mental illness in education, employment and housing; and Ensuring that consumers have access to needed resources, including those necessary for sustaining life (adequate food and shelter) as well as the social and health services that can
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aid recovery (physical, dental, and mental health services; job training; supported housing; and employment programs).

Figure 15.1 shows the process of connecting consumers to a social world in a journey of recovery. Advocacy provides benefits for1: Individuals - by maximizing the consumer and family voices in matters affecting the care, treatment and quality of life of those affected by mental illness. Service Providers - through early identification and resolution of consumer concerns. Policy Makers - through early identification of emerging issues and trends that impact on quality of life and quality of care and through support to government policy for a balanced mental health system where vulnerable persons rights are protected.

15.4

What is the Vision for Advocacy?

Individuals with mental illness and families have the right to be heard and to have changes made on their behalf. Advocacy is the vehicle to accomplish this. Advocacy is a crucial component of a recovery-focused mental health system. The following set of guiding values and principles is proposed:

Adapted from the Psychiatric Patient Advocate Office submission to Mental Health Implementation Task Forces, entitled: Advocacy An Essential and Integral Component of a Reformed Comprehensive Mental Health System, March 8, 2002.
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Figure 15.1 The Consumer-Centred Recovery-Focused Context

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Values with respect to Individual Advocacy

We believe that 1. Advocacy should be seen as a positive force for empowering people with mental illness and families and thereby giving the vulnerable a voice. 2. People with mental illness and families have the need and the right to advocate to improve the lives of those affected by mental illness. 3. All people with mental illness and families have the right to be listened to and treated with respect and dignity. 4. People with mental illness and families should have the choice of the kind of advocate they want to represent them.

Values with respect to System Advocacy We believe that. 1. Individuals with mental illness are at the centre of the mental health system and advocacy should be directly available to them in dealing with matters related to the individual and the system. 2. Advocacy must recognize that families are integral to the quality of life of people with mental illness. 3. Government policy and the mental health system should be responsive to the needs of people with mental illness and families. 4. Advocacy helps to identify gaps or where the system doesnt work for individuals and families so that the system can respond to their needs. 5. The mental health system must be accountable and responsible. 6. Collective responsibility requires an advocacy system that flows from and fosters the Social Conscience. 7. Advocacy should be available directly to families in dealing with matters related to the individual and the system.

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Principles The Mental Health System will: 1. Embrace the values and principles of advocacy and reflect them in the way it functions. 2. Recognize advocacy as an essential function in a comprehensive mental health system. 3. Recognize advocacy as a means to identifying problems. 4. Recognize advocacy as a means of solving problems. 5. Give advocates recognized authority within established accountability structures. 6. Ensure that advocates are independent and autonomous. 7. Respect the confidentiality of self and individual. 8. Ensure that advocacy is accessible. 9. Have a process so that consumer/survivors and families are informed on advocacy. 10. Have a process to respond to the voice of consumer/survivors and families. 11. Ensure that system advocacy is transparent and accountable to the community. 12. Recognize divergent views. 13. Acknowledge the potential for friction, on occasion, between what consumers and families want. 14. Have a process to evaluate the effectiveness of advocacy. 15. Ensure that advocacy functions are available in both official languages (French and English). 16. Be responsive to the needs of the native population and multicultural communities. The government will fund the advocacy function.

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15. 5 Integrating Advocacy in the Northeast Mental Health System Design

The roles and responsibilities with respect to advocacy and education of the MOHLTC and the Northeast Region Mental Health Board (NRMHB) - key components of the mental health system- are summarized on Table 15.1. The table details how the MOHLTC and the NRMHB can work towards meeting the following goal: Reformed mental health services will be informed by the meaningful participation of consumers, families, caregivers and stakeholders. The advocacy function is clearly embedded within the stated objectives under this goal. In keeping with the approach that form follows function, the advocacy functions/ services at various levels as well as the basic characteristics to meet the vision, guiding values and principles of advocacy are outlined.

What are the Advocacy Functions and Services? At the Local Level Individual focus: Listening and seeking clarity around an issue Explaining options on consumer rights and responsibilities, providing information about options, talking to staff and family members on individuals behalf if requested and assisting in resolving consumer problems Conflict resolution Negotiation and mediation Teaching/coaching re: self advocacy Empowerment through training and skill development to build capacity for self advocacy

Systems focus: Development of local networks and local informal advocacy/support for people Building capacity for informal supports - expert consultation support, ongoing training and education of local community networks, self help and peer support Ensure that formal supports are fulfilling their roles
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Community development Sharing good practice Evaluation of outcomes

At the Provincial Level: Development of regulations and standards Training Lobbying positions Sharing good practice Research

What are the Characteristics of the Advocacy Function? Arms length from direct service provision but with links to the formal service system. Provision of service informs advocacy by providing a knowledge base of accurate information and a connection to the consumers experience and the operational realities of direct service provision. Formal and informal advocacy. Individual and systemic advocacy. Multiple accountability multiple sources of funding. Cross disability including dual diagnosis and concurrent disorders (e.g., mental health and physical disabilities, developmentally delayed, addiction, etc.). Cross life issues and deal with the whole person within a recovery oriented focus. Multifaceted and delivered at various levels (individual/systemic, formal/informal) all of which complement/supplement each other. Accessible to consumer/survivors, families, providers.

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What Structure(s) can Fulfill These Functions?

There is a role distinction between ombudsperson and advocate. Referring to documentation provided by the Psychiatric Patient Advocate Office (PPAO) (1997, 2002), the role of the ombudsperson is to investigate complaints against provincial ministries, ABCs (agencies/board and commissions), and other administrative units of the provincial government. These nonpartisan investigators conduct impartial investigations, gathering the facts of a particular situation and making recommendations aimed at achieving fair and balanced resolutions for the interested parties. Ombudsperson services are available only as a last resort when other areas of resolution and appeal have been exhausted. In contrast, the definition of an advocate as one who pleads the cause of another or that defends or maintains a cause, is predicated on a close relationship with the complainant. PPAO staff, for example, are partisan advocates for patients. Advocates can pursue instructed, noninstructed or system advocacy efforts. While there is a need in Ontario and its regions for both ombudspersons and advocates, the envisioned advocacy function, as defined above, cannot be fulfilled by an ombudsperson. Therefore, the following two structures be established to fulfill the advocacy functions previously described: Northeast Consumer and Family Advocacy Office Mental Health Systems Provincial Advocacy Office

Figure 15.2 provides an overview of how these two structures would be included in the Northeast Mental Health System.

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Table 15.1: Roles and Responsibilities Related to Advocacy Goal: Reformed mental health services will be informed by the meaningful participation of consumers, families, caregivers, and other stakeholders. Objective: Increased meaningful participation of families and consumers in the planning and management of mental health sector services. Responsibilities of the MOHLTC Responsibilities of the Mental Health Board To establish and support mechanisms at the local and regional level to Establish and support mechanisms at the provincial level ensure meaningful consumer, family, care providers, and other to ensure meaningful consumer, family, care providers, stakeholder participation in mental health reform. and other stakeholders participation in mental health reform. To ensure coordinated liaison efforts with the various local advocacy and advisory structures. To ensure ongoing review of all advocacy and advisory structures. Objective: Improved advocacy for persons with serious mental illness. Responsibilities of the MOHLTC Responsibilities of the Mental Health Board Ensure that consumers, families and caregivers are informed about the Support and promote the role of the Provincial Mental roles of the Regional and Provincial Mental Health Advocacy Offices. Health Advocacy Office. Support the Ministers Advisory Council on Mental Health. Objective: Provincial use of a Consumer Charter of Rights Responsibilities of MOHLTC Responsibilities of the Mental Health Board Create a Provincial Mental Health Consumers Charter of Develop mechanisms to ensure that the Consumers Charter of Rights Rights with the Provincial Advocacy Office as the lead in forms the foundation of the service delivery system. consultation with the regions. Ensure local compliance with the Provincial Charter. Consumer input will drive this development. Ensure that a regular review of adherence to these charters is conducted. Case Coordinators and Consumer Advocates to report on compliance. Objective: Comprehensive communication with the public and consumers Responsibilities of the MOHLTC Regional Office Responsibilities of the Mental Health Board Provide timely and comprehensive information on their progress in Provide timely and comprehensive information on the mental health reform to all stakeholders progress of mental health reform to all stakeholders. Provide ongoing education about serious mental illness to Provide public education about serious mental illness within their communities the public.

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Figure15.2 Outline of Mental Health System Structural Components Including Advocacy Minister of Health and Long-Term Care

Mental Health Systems Provincial Consumer & Family Advocacy Office

Northeast Mental Health Consumer and Family Advocacy Office


Rights Advisors Expanded PPAO Advocates

Specialized Services
Housing

Employment

Integrated Community Services

Recreation General Health Religion/ Spirituality

Acute Schedule 1 Hospitals


Family Initiatives Education & Training

Consumer/ Survivor Initiatives

Service Agreements / Collaborations

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Key features of these two structures are described in the following sections. It is important to note that the operational details (e.g., administration) have not been examined at this point.

Northeast Mental Health Consumer and Family Advocacy Office

Relationship with Mental Health Systems Manager NRMHB or equivalent. Complements and supplements existing institutional and community advocacy mechanisms. Offers support and information to individuals with mental illness and their families. Receives, investigates and resolves complaints. Monitors outcomes of issues raised. Promotes self advocacy. Facilitates prompt access/referrals to appropriate advice/community resources or mediation as required.

Follows individuals instructions when providing services within agreed parameters. Serves as a clearinghouse for the maintenance and dissemination of information related to advocacy and public education.

With respect to system advocacy: Flags systemic issues. Works with the community to identify and address local needs. Brings together stakeholders and works with existing networks to coordinate advocacy efforts and address systems issues. Reports on system issues on a regular basis to the regional systems manager and annually to the Ministry of Health and Long-Term Care and other funders. Monitors compliance with the Consumer Charter of Rights and the Principles for Meaningful Involvement of Families (see Section 6 for the latter).

Multifunded and clear mandated role within the following Ministries: Citizenship;
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Attorney General; Health and Long-Term Care; Community, Family and Childrens Services; Education.

To include the following existing resources related to individual advocacy: Rights Advisors (inpatient, community treatment orders) PPAO advocates (expanded to include consumers and family in the community as well as inpatients). Accountability: The advocacy service must monitor consumer satisfaction. Accountability processes for the service should include standards of conduct and practice for advocates, performance appraisals and program reviews. The service should provide reports on its activities to the regional system manager and to funders on an annual basis, at a minimum.

Mental Health Systems Provincial Consumer and Family Advocacy Office Provides leadership and expertise in advocacy, including: The development of provincial regulations and standards; The creation of a Consumer Charter of Rights in consultation with the regions and driven by consumer input; The creation of a document on the Principles for Meaningful Involvement of Families in consultation with the regions and based on families input; The development of training programs; The development of information systems; Research on best practice; and Sharing of good practice.

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Monitors provincial issues, trends and identifies system advocacy initiatives. Monitors mental health policy and legislations development that impact on individuals rights. Inter-Ministerial support and funding.

15. 6 Recommendations

1.

That advocacy have a clear mandated role within the mental health system supported by legislated authority and funding.

2.

That the MOHLTC develop, in consultation with the regions, a provincial framework for advocacy services. Consideration should be given to existing proposals (like that of the PPAO) and recommendations in the final reports of the Mental Health Implementation Task Forces. The framework should include the fulsome approach to advocacy and ombudsman roles defined in this report.

3.

The MOHLTC, in partnership with the Ministries of Citizenship, Education, Attorney General and Community, Family and Childrens Services, establish the Mental Health Systems Provincial Consumer and Family Advocacy Office. This organization will: Provides leadership and expertise in advocacy, including: The development of provincial regulations and standards; The creation of a Consumer Charter of Rights in consultation with the regions and driven by consumer input; The creation of a document on the Principles for Meaningful Involvement of Families in consultation with the regions and based on families input; The development of training programs; The development of information systems; Research on best practice; and Sharing of good practice.

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Monitors provincial issues, trends and identifies system advocacy initiatives. Monitors mental health policy and legislation development that impact on individuals rights.

Inter-Ministerial support and funding.

4.

The MOHLTC in partnership with the Ministries of Citizenship, Education, Attorney General and Community, Family and Childrens Services, establish the Northeast Mental Health Consumer and Family Advocacy Office. This organization will: Relationship with Mental Health Systems Manager NRMHB or equivalent. Complements and supplements existing institutional and community advocacy mechanisms. Offers support and information to individuals with mental illness and their families. Receives, investigates and resolves complaints. Monitors outcomes of issues raised. Promotes self advocacy. Facilitates prompt access/referrals to appropriate advice/community resources or mediation as required. Follows individuals instructions when providing services within agreed parameters. Serves as a clearinghouse for the maintenance and dissemination of information related to advocacy and public education.

With respect to system advocacy: Flags systemic issues. Works with the community to identify and address local needs. Brings together stakeholders and works with existing networks to coordinate advocacy efforts and address systems issues. Reports on system issues on a regular basis to the regional system manager and annually to the Ministry of Health and Long-Term Care and other funders.

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Monitors compliance with the Consumer Charter of Rights and the Principles for Meaningful Involvement of Families.

Multifunded and clear mandated role within the following Ministries: Citizenship; Attorney General; Health and Long-Term Care; Community, Family and Childrens Services; Education.

To include the following existing resources related to individual advocacy: Rights Advisors (inpatient, community treatment orders) PPAO advocates (Expanded to include consumers and family in the community as well as inpatients). Accountability: The advocacy service must monitor consumer satisfaction. Accountability processes for the service should include standards of conduct and practice for advocates, performance appraisals and program reviews. The service should provide reports on its activities to the regional systems manager and to funders on an annual basis, at a minimum.

15.7

References

Anthony, W. (2000). A recovery-oriented service system: Setting some system level standards. Psychosocial Rehabilitation Journal, 24(2), 159-168.

Jacobson, N., & Greenley, D. (2001). What is recovery? A conceptual model and explication. Psychiatric Services, 52(4), 482-485.

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Ministry of Health and Long-Term Care. (1999). Making it happen: Implementation plan for mental health reform and Operational framework for mental health services and supports. Toronto, ON: Author.

Ontario Mental Health Act, RSO (1990).

Psychiatric Patient Advocate Office. (2002). Advocacy: An essential element and integral component of a reformed comprehensive mental health system. Submission to the Mental Health Implementation Task Forces. Toronto, ON: Author.

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