Advocacy ManualSA Federation for Mental Health

Private Bag X3053, Randburg 2125Tel: 011 781 1852 Fax: 086 558 6909

E-mail: info@safmh.orgwww.safmh.org

ContentWhat is advocacy?

About SAMHAM

Advocating for Human Rights

SAMHAM Advocacy Leaders

How to start an advocacy group

Steps on how to start advocacy or support groups

Making a difference

Important contacts

1

2

3

4

8

10

16

17

Definition:

Advocacy involves addressing the needs and challenges of a certain group of people in society (such as persons with psychosocial

and intellectual disabilities) through influencing policies and legislation and

ensuring that their basic human rights are protected and respected, and that they have

equal access to services and life opportunities through raising awareness on

the plight of the group of people.

What is Advocacy?

~1~

~2~

The South African Mental Health Advocacy Movement (SAMHAM) was established by the SA Federation for Mental Health (SAFMH) in 2007 in recognition of the importance of giving persons with psychosocial and intellectual disabilities (referred to in this document as mental health care users – MHCUs) a voice, and further recognising that they are ultimately the experts in mental health and should thus always be key partners among all stakeholders within the mental health sector.

Outside of the mental health field and within communities, MHCUs must be empowered to participate at all levels of their lives. Stigma attached to these disabilities is very high (not just in SA, but worldwide), which creates barriers in accessing and enjoying all rights enshrined in the South African Constitution's Bill of Rights and other relevant policies, legislation and international treaties such as the UN Convention on the Rights of Persons with Disabilities.

MHCUs play a crucial role in breaking down these barriers through being empowered and actively working with the public and private sectors, and expressing their concerns, needs, challenges and working together to overcome these. Because of their personal experiences, MHCUs are also a key source of awareness on mental health, with direct access to and in-depth knowledge about specific communities across South Africa.

MHCUs are however yet to effectively communicate and raise awareness about their needs and to self-advocate on all public platforms for their rights to be upheld and their challenges to be addressed. The lack of strong national, provincial and local self-advocacy movements result in continued social isolation and marginalisation of these individuals. In this way, human rights violations continue unmonitored, ignored and in many cases not even reported, which result in unequal and limited access to resources and the protection of MHCUs’ rights. All these issues impact negatively on the lives of MHCUs.

About SAMHAM

~3~

The Department of Health's (DoH) National Mental Health Policy Framework and Strategic Action Plan for 2013-2020 emphasises (in point 7.5 on Advocacy) that there is a commitment from the DOH to (4) “give exposure to positive images of mental health advocates, prominent user role models and well-known and influential champions for mental health in order to change discriminatory attitudes toward mental disability. This work will be framed within the provisions of the UN Convention of the Rights of Disabled Persons and the human rights based framework of South African law, as well as advocacy guidelines from the WHO” and further states (5) “Emphasis will be placed on ensuring representation of people with mental disability on the broader disability agenda, and developing capacity to place mental health user concerns on the political, development and public health agenda”.

These goals were set to be achieved by 2015, and it is therefore critical that these be continuously prioritised and that MHCUs continue to be empowered and are enabled to fully participate in these activities and to achieve these goals.

Advocating for Human Rights

Dignity is a human right guaranteed to all South Africans in the Bill of Rights. Unfortunately, MHCUs are amongst the most vulnerable in society and are often exposed to abuse, exploitation and other human rights violations. At the same time, they are often unaware of their rights or of where to report human rights violations.

SAFMH aims to ensure that policies and legislation that are in place are implemented and that these protect and respect the rights of MHCUs. MHCUs have direct experience of mental health services and the daily challenges experienced by MHCUs in the community, and they are therefore in a perfect position to identify these issues and to work with SAFMH to improve services and contribute to the improvement of the quality of life of MHCUs. Through support and guidance from SAFMH, advocacy leaders in the community can play an important role in educating MHCUs on their rights and on where and how to report human rights violations.

~4~

SAMHAM advocacy leaders are recruited from across South Africa and are trained, empowered and supported by SAFMH, who keep in regular contact with these advocacy leaders and who provide them with information and guidance on how to conduct advocacy work in their communities and on how to establish advocacy groups for MHCUs. The overall aim of this is to create a well-coordinated, effective national advocacy movement through which MHCUs can be empowered.

SAMHAM Advocacy Leaders

A SAMHAM advocacy leader is someone who: Has overcome challenges related to their disability and, through their

experiences, could help others overcome similar challenges

Is passionate about adding value to the lives of persons with disabilities

Is determined and motivated to improve the lives of others who have a disability

Uses their initiative to overcome challenges and to address the needs of communities

Is energetic and eager to gain as much information as possible, to empower themselves and to share this information with others to help empower them

Uses their talents and skills to do advocacy work (for example, if you have good writing skills, you could help other MHCUs write their life stories and, with their consent, send these to SAFMH to use in awareness campaigns; or, if you are artistic, you could start an arts and crafts group in your community with MHCUs who might have similar interests)

~5~

What you DON'T need to become a SAMHAM advocacy leader: You don't need matric, a university diploma or degree, or any other

formal qualifications – as long as you can speak, read and write in English to ensure that you are able to communicate effectively with SAFMH, the media, groups of individuals or other organisations, and that you are able to participate in meetings, forums and conferences, you can become an advocacy leader

You don't need to know everything about psychosocial and intellectual disabilities or about human rights – you will learn this over time and at a pace that you are comfortable with, and with support from SAFMH

You don't need an office or a car – as long as you have access to a cell phone and email (for SAFMH to be able to keep in contact with you and to provide you with ongoing support and guidance), you are able to become an advocacy leader. You could consider your community to be your 'office' because this is where you will be working together with community members and other MHCUs

You don't need to have instant confidence to speak like a professional in front of an audience – you can start taking on opportunities to speak at community events when you feel ready to do so. Gaining confidence to speak in public comes with time and experience. You can start off by practicing to speak to a small group (such as an advocacy or support group), and then take on bigger events as you grow in confidence

~6~

The role of a SAMHAM leader: Advocacy leaders work with SAFMH and participate in community-based advocacy activities. The advocacy leader decides what they want to get involved in, what is best suited to their skills and capabilities, and what they feel comfortable doing in their community to help address the needs and challenges of MHCUs.

SAFMH supports advocacy leaders with their activities and helps to connect them with organisations, government departments and other stakeholders in their community who could potentially provide additional support to them.

As an advocacy leader you can slowly but surely build a positive reputation for yourself through:

Building a relationship with your community, especially with MHCUs. You can also make the community aware that you are working with SAFMH, that you are doing advocacy work and that you wish to work together with the community to help and support MHCUs. Should anyone have enquiries about SAMHAM, they can contact SAFMH (telephone 011 781 182 or email humanrights@safmh.org)

SAFMH will put you in contact with the Department of Health's district and provincial mental health coordinators, who could assist you, should you find that MHCUs are experiencing challenges at their local clinics or hospitals (for example when medication is not available). The Department of Health's coordinators can also involve you in their awareness events and invite you to attend or to speak at their events (if you are comfortable doing so). They can also help you with building a relationship with local clinic nurses so that they can involve you in their work with MHCUs (for example where nurses can refer MHCUs to you for information about their rights)

SAFMH can help put you in contact with organisations working in the field of mental health and disability in your community, who could also provide you with additional support and involve you in their awareness activities

~7~

You should try engage with MHCUs as often as possible. For example, having conversations with MHCUs about their challenges and needs, or what their views are about issues related to mental health, services and human rights. You can then share this information with SAFMH, who will use the information in campaigning for improved services for MHCUs

In some areas there may already be advocacy groups, whilst in other areas there might be none. With support and guidance from SAFMH, you could start your own advocacy group in your community if no other exist. If there is already an advocacy group in your community, you could join the group, which would help give you some insight into what the group members experience in terms of their rights, challenges and needs, and how you could collectively address these issues

An advocacy group can be a space where MHCUs voice their concerns, ideas and hopes for the future, where they can belong to a group and not feel isolated and find out where they can obtain information to empower themselves

Human rights violations can be passed on to SAFMH, unless you are able to refer the case directly to organisations or government departments that you are familiar with to help the individual in accessing the right channels to justice services

Assist with recruiting members for SAMHAM by asking MHCUs in your community to also join SAMHAM and explaining what SAMHAM is all about

Identify MHCUs who have leadership potential and who fit the

criteria of an advocacy leader (as explained in this manual). If the person shows interest in becoming an advocacy leader, you can inform SAFMH, who will get in contact with the person to add them to the advocacy leaders database. The new advocacy leader will then be provided with an advocacy toolkit and they will receive support and guidance to settle into their new role and to conduct advocacy activities in their community

How to start an advocacy group

~8~

What is a mental health advocacy group?

As a national mental health advocacy group, SAMHAM is a group of MHCUs who gather information about the concerns and challenges of MHCUs and who then take this information to develop ways to overcome these. SAFMH can provide information to create awareness on the issues raised by MHCU and can call on relevant organisations or government departments to help address the problems in consultation with MHCUs. It is important that MHCUs are always involved in matters that affect their lives. Therefore, organisations and government department must provide MHCUs with the opportunity to take part in discussions about services used by MHCUs, or about any policies and legislation that need to be changed to improve services and the quality of life of MHCUs. Through their experiences of using services, MHCUs can provide valuable inputs to help make positive changes to the design and delivery of services.

A mental health advocacy group's primary focus should always be on the human rights of MHCUs, and it should work to help ensure that services (including health and mental health services, services related to disability grants, and justice services) are protecting the rights of MHCUs.

A mental health advocacy group can also function as a support group, and vice versa.

~9~

What is a mental health support group?

A mental health support group is the help and support that MHCUs give to one another through sharing their own experiences in a group setting. People are able to relate to and find comfort in hearing how others have experienced their own mental disorders or how they have dealt with difficult times and symptoms. Through this, they are able to develop coping mechanisms by applying what they have learnt from others. At the same time, they will learn that they are not the only ones facing the challenges of having a mental disorder.

~10~

Steps on how to start anadvocacy or support group

Step 1 Meetings schedule

Step 2 Meetings venue

Come up with a suitable frequency to meet, e.g. every second Friday of the month.

Find a meeting venue e.g. at a clinic, hospital, community centre, church hall – somewhere private where group members can speak freely and share information in confidence to help put group members at ease.

Step 3 Marketing of groupPost notifications at cl inics, hospitals, community centres, churches and invite MHCUs to join the group.

~11~

Step 4 “Virtual Groups”You can start a closed Facebook/ WhatsApp group, where members can engage with each other and share relevant information at any time. Facebook and WhatsApp groups are referred to as virtual groups because they are made up of group members who don’t necessarily live in the same area and who might be unable to meet each other face-to-face on a regular basis. Two or three people in the group can be appointed as administrators of the Facebook or WhatsApp group, who would be responsible for approving membership requests, for regularly posting information and for responding to enquiries related to mental health and human rights. They will also take responsibility for ensuring that no inappropriate comments or information is shared through the group and that it remains a positive environment for all the members.

Step 5 Group NameCome up with a name for the advocacy group which will help give group members a sense of belonging and ownership over the group. The name can contain the wording “… Mental Health Advocacy Movement” – this will make it clear what the group is about and will attract people who have an interest in mental health and advocacy.

~12~

Step 6 Expert and speakersIt adds great value to an advocacy group if an expert or other speaker is invited to address the group on a topic of interest on a regular basis. Topics could include psychiatric medications, disability grants, employment and learnerships, human rights, or anything else that the group might feel is important.

Step 7 Appointing a Chairperson and Deputy ChairpersonElect a chairperson who would lead the group through overseeing activities and to act as the main contact person for the group. It is advisable that a new chairperson be appointed each year to give everyone a chance to take the lead. It is also advisable to have a deputy chairperson to share responsibilities so that the work does not become too much for one person. The role of the chairperson and deputy chairperson is to manage the group's activities through coordinating and running meetings and overseeing activities of virtual groups. SAFMH can assist with further clarification of these roles as your group develops.

~13~

Step 8 MeetingsIt is important to jointly agree on the rules of the group. Important issues to take into consideration is that confidentiality, respect for each other and giving everyone the opportunity to participate is very important.

Rules can also be practical in nature, such as helping to ensure that members are not distracted from the discussions in the group or that unnecessary interruptions are eliminated through making a rule that group members are to switch their cell phones off at all times.

Have a standard agenda for all meetings, which could include: Welcoming – everyone introducing themselves Discussing concerns and challenges Proposing solutions to concerns and challenges Sharing information – updates on current news in mental

health

Group members could also make a decision to donate a small amount (for example R5 per month) to help pay for coffee, tea and biscuits for meetings. The chairperson or deputy chairperson should be responsible for managing these finances (including keeping records of donations and purchases) and for purchasing the refreshments and bringing them along to the meetings.

~14~

Step 9 “Buddy System”It is advisable to have a so-called “buddy system” in place, where each group member has someone to check in with on a regular basis and who is there to support them. If one “buddy” needs help, the other can provide support as necessary.

MHCUs are sometimes unemployed and may find that there are no activities in which they can participate in in their communities.

Step 10 Income Generation Activities

Income generation activities could benefit group members (for example producing products that can be sold to aid in the group members' monthly income). This could include arts and crafts, starting a vegetable or herb garden. There are several internet sites that have creative ideas of making things through for example recycling. It is important to be aware of income tax implications when income is generated above a certain amount per month – it is advisable to make contact with SARS to get guidance on this.

~15~

The group may decide to organise awareness events in their community. These activities can be in the form of sharing information or their experiences (if they are comfortable in doing so) with the community, with organisations or with service providers.

Step 11 Awareness Activities

Through awareness activities and by sharing their experiences and breaking down stigma, group members can play a valuable role in the community.

Stigma is negative, untrue and unfair beliefs that a society or group of people have about something or about a certain group of people, for example where people believe that MHCUs are not able to be employed. By sharing their life stories with the community, with organisations or service providers, MHCUs could help change people’s negative perceptions. Research has shown that raising awareness through sharing life stories can be an effective way of reducing stigma.

~16~

Becoming an advocacy leader may sound like a daunting task, but it

can be rewarding in the sense that you as an advocacy leader can make a significant and positive

difference in people’s lives.

In your role as an advocacy leader, you will always have the full

support and guidance from SAFMH, and together we can help protect

the human rights of MHCUs.

Making a difference

Report Stockout of MedicationCall/SMS/Please Call Me/WhatsApp 084 855 7867 (STOP)

Dr Reddy's Help Line0800 21 22 23

Pharmadynamics Police &Trauma Line0800 20 50 26

Adcock Ingram Depression and Anxiety Helpline0800 70 80 90

Destiny Helpline for Youth & Students0800 41 42 43

ADHD Helpline0800 55 44 33

Department of Social DevelopmentSubstance Abuse Line 24hr helpline

0800 12 13 14SMS 32312

Suicide Crisis Line0800 567 567SMS 31393

SADAG Mental Health Line011 234 4837

Akeso Psychiatric Response Unit 24 Hour0861 435 787

Important Contacts

~17~

humanrights@safmh.org

011 781 1852

076 0788 722

www.safmh.org

P/Bag X3053, Randburg 2125

Should any of your rights be violated, you now have the opportunityto use any of the below means of communication to report it to us.

SAMHAM invites all persons with psychosocial and intellectual disabilities to become members (at no cost), which entitles members to receive the quarterly eNewsletter, have access to information related to mental health and advocacy, have access to legal support and advice in accordance with the SAFMH’s Legal Support Programme, and most of all, become part of a Movement that stands to promote human rights, address human rights violations and correct inequities.

Become a member - send us your details to: info@safmh.org and use “SAMHAM Member” as the subject matter. Remember to send: your name, surname, physical or postal address, contact numbers, email address, and state your disability (psychosocial or intellectual disability).

Remember, we are on Facebook and Twitter - so join and follow us!

TELEPHONE

EMAIL

SMS / WHATSAPP

ONLINE

POST

South African Mental Health Advocacy Movement (SAMHAM)

The Mental Health Watch - Human Rights Reporting System