Peer Support Groups

Peer support groups (Experts By Experience)
In the year 2012 USPKenya was inundated by requests from individuals and families for psychosocial support and information from all over Kenya. This came up as the Nairobi peer support group kept growing from strength to strength attracting members from all over the country. Travelling to Nairobi for many members proved to be a challenge hence the need to set up support mechanisms in other regions for users/survivors.

In September 2012, through the support of the Disability Rights Initiative of The Open Society Foundation, the organization embarked on establishing peer support groups in four other counties namely Nyeri, Kiambu, Nakuru, and Eldoret, on pilot basis. The support groups are established as follows:

The core functions of the support groups are:

1. To provide psychosocial support for persons with psychosocial disabilities and their families;
2. Building the capacity of the users/survivors on human rights, self-advocacy, self-care and sustainable livelihoods;
3. To empower persons with psychosocial disabilities so that they can be involved in decision-making and be able to articulate their issues with respective decision makers including their families, care givers, doctors and governments within the devolved governance structures of Kenya;
4. Acts as pillars of social change to promote greater inclusion of persons with psychosocial disabilities at both the national and community level;
5. Building the capacity of care-givers on the human rights of users/survivors so that they can respect their inherent dignity and the right to self-autonomy and determination. In addition to that, promote understanding and support for persons with psychosocial disabilities within their families and respective communities.
6. Building the capacity of the groups to work with the local media as a key partner in promoting the human rights discourse for users/survivors while at the same time providing an opportunity for public education.

 Support group establishment

The process of establishing a peer support group starts with the organization identifying the following key partners at the grassroots: Community health or social worker, the local area chief or relevant administrative authorities and finally linking up with the local hospital. The roles of the respective persons are defined as:

• Community health/social worker – provides an important interface between the organization, the local communities and the health facilities especially because they are trusted members of their respective communities.
• Local chief – being the main coordinator of government activities at the local level provides legitimacy to the process and also provides an avenue for addressing issues of persons with psychosocial disabilities at the local level.
• Local hospitals- mostly provide an avenue for mobilizing users/survivors in their respective locations. It is worth noting that a direct approach might not work because of the high levels of stigma at the community level.

Support groups structure
The support groups mostly consist of between 15 – 40 members although some of them have more than 40 members. From experience smaller groups are more viable to run due to the diversity of group dynamics. Around 90% of the members in the groups are users/survivors while the rest are mostly care givers. In rural areas it is sometimes not possible to separate users with high support needs from their care givers since most of them live together and are highly dependent on their care givers in a set up where there is limited state support.

In urban areas the users/survivors tend to be more autonomous which is probably influenced by their education levels and better opportunities of engaging in sustainable livelihoods hence making them more independent. Every support group must be formally registered as a self help group with the ministry of Labour, Social Security and Services and also as a Disabled Person’s Organization (DPO) with the National Council for Persons with Disabilities (NCPWD). Registration with the Ministry is important in order for groups to be formally recognized by the government where it is imperative for the group to be registered with the NCPWD as a DPO in order for the group to benefit through various grants and services from the government for persons with disabilities. The support groups are normally run by three key officials namely the chairperson, the secretary and the treasurer who are appointed by the members in their Annual General Meeting. The chairperson normally chairs the meetings; the secretary is responsible for keeping the minutes and the treasurer for maintaining the financial records of the group. The designated officials are provided with their assistants who are also viewed as their support persons. The elections of the group officials is guided by two core principles namely: Two of the three top officials must be persons with psychosocial disabilities while at the same time ensuring that one-third of those appointed must be at least from either gender which is a requirement by the Constitution of Kenya 2010.

Operations
The support groups mostly meet from 10a.m which is a time that reasonably accommodates all members especially those who are on medication and might not be able to wake up early in the morning. In rural areas the groups mostly meet at the local chief’s camp or in the respective district hospital. Meeting at the chief’s camp is more advantageous as it helps the groups to achieve greater recognition by the devolved government while at the hospital sometimes it becomes a bit problematic due to interference by some medical professionals who want to be part of the peer support program and promote the medical model other than adopting a holistic approach.

In the urban areas the most viable option is normally to hire a venue since people come from different regions within the city which makes it important to look for a central location accessible to all members. The chairman or any other person appointed by him normally moderates the session and lays down simple rules of engagement.

The first session which is highly informal involves offering psychosocial support where the members state their name and briefly share how they have been. This session is normally chaired on a rotational basis by the members in order to improve the overall capacity of the peer support groups. The group members are able to pick different issues in the process and offer support/advise to the concerned person. One of the most common trends in the beginning is a situation where carers introduce persons with psychosocial disability and also tend to explain their issues to the group and speak on their behalf.

It’s the responsibility of the facilitator to point out the need for self representation and this is normally a long journey in trying to restore the voice and power back to the person while at the same time balancing the family interests in order not to create tensions. The second session of the support groups are more structured basically dealing with matters arising which varies from one group to another. The group members are mostly divided into various sub groups to encourage a participatory approach in their operations. The key main sub groups are advocacy, policy and legislation (meant to engage with the local devolved government and initiate dialogue with them), media monitoring and the health subgroup which looks at the general welfare of the members in the support group. Each sub-group with the technical support of USPKenya develops an action  plan for every quarter where they indentify their key priority areas which they want to accomplish within the specified quota as part of the overall group objective. The groups also run merry go rounds schemes where the money collected is sometimes loaned out to the members at a small interest fee or used to improve the overall welfare of some members.

 Impact of the peer support groups

1. Through the establishment of peer support groups and self advocacy, about 200 people are able to access mental health services within their community;
2. Improved overall wellbeing, health through peer education and adopting a social model to address mental health issues;
3. Empowered users/survivors to self-advocate e.g. waiver of daily market access fees, reduction in the cost of medication in the local hospitals, benefits accrued from the Community Development Funds (CDF) e.g education bursaries for their children;
4. Reduction in cases of forced treatment by creating awareness on the human rights, personal responsibility, collective communal responsibility and empowering both carers and users on how to respect the inherent dignity of users/survivors within the community;
5. Reduction in stigma and discrimination through media monitoring, media engagement and public education programs;
6. Enhanced independent living in the community by promoting sustainable livelihoods, self-help merry go rounds and the right to self determination;
7. Gradual restoration of voice, power and authority to persons with psychosocial disabilities thereby enhancing pathways to independent living and greater participation within the society;
8. Promoting better access to justice and reducing violence by working with peer support groups, families and the local administrative authority.

The following key drivers ensure the successful implementation and sustainability of the peer support programs

1. Adopting a multispectral approach by working with users, carers, health professionals and local government authorities;
2. Strategic relationship with Human Rights Institutions and the National Council for Persons with Disabilities which provides funds for the peer support groups to build sustainable livelihoods;
3. Engaging with the media for public education programs and eradication of stigma and discrimination;
4. Engaging with local devolved systems. This will enhance future sustainability by accruing benefits from the local devolved government e.g. the Community Development Fund (CDF).

Challenges faced by the peer support groups

1. In the initial stages of forming the peer support groups, there is an expectation by some members to be paid for attending the support group meetings (charity model). This can be a challenge due to the paradigm shift to a rights based model.  There are some members who leave upon realizing there are no hand-outs;
2. Some of the peer support groups have lost members due to suicide;
3. Lack of proper recognition of the peer support groups in local devolved government structures (despite the fact that they are registered by the government as Community Based Organizations) leading to social exclusion from devolved government processes e.g. challenges in accessing devolved funds and other available resources within the community;
4. Extreme poverty. A big number of persons with mental health conditions live in extreme poverty and are neglected by their families/communities. This often leads them to lack basic needs e.g. food, medicine, shelter etc
5. Ensuring that human rights are not abstract but they translate into something tangible and meaningful for persons with mental health conditions at the grassroots;
6. Most of the groups initially lack the capacity to keep proper simple administrative and financial records;
7. Challenges in promoting the right to self determination in a society where persons with psychosocial disabilities are viewed as objects with no rights and obligations. There are also difficulties in addressing the violence and tensions within the families.

Support groups in counties
USPKenya currently runs five support groups in four counties namely Nairobi, Kiambu, Nyeri and Nakuru. The first three support groups were operational from September 2012 while the Nakuru support group was established in March 2013.

The support groups receive rights-based trainings through USPKenya in the area of disability, mental health covering diverse topics such as: understanding mental health; living and caring for persons with a psychosocial disability by respecting their inherent dignity; and empowering persons with psychosocial disability to lead productive lives.  The human rights trainings focus on the Constitution of Kenya, the Persons with Disabilities Act (2003) and the Convention on the Rights of Persons with Disabilities (CRPD)

Nairobi County
The Nairobi Peer support group meets twice per month and mostly consists of professionals. The group has been actively involved in advocacy at the national level. The peer support group has also been involved in initiatives geared towards fighting discriminatory practices against persons with psychosocial disabilities e.g. on the on-going efforts for users/survivors to be granted the tax exemption from the Kenya Revenue Authority. Most of the members are more empowered in the area of health care, child custody and also in financial management.

Kiambu County
This peer support group is based in Lusigetti area and meets at the Local Chief’s Office at Karai compound every first Friday of the month.  It comprises of about 20 members of whom some are carers and the majority users/survivors. Most of the members are elderly women engaged in various self-help group activities such as subsistence farming and livestock rearing. The group is duly registered as a self-help group by the Ministry of Labour, Social Security and Services and also with the National Council for Persons with Disabilities. The members have been contributing a certain amount of money every month, which is normally loaned to the group members who in turn engage in small scale farming and businesses.

Nyeri County
There are four support groups here who meet on a monthly basis. The venues are: Kiamariga, Kiamabara, Karindundu, Kaiyaba and Karatina District Hospital. The groups are leading the way to show that rural areas have as much opportunity as urban areas in advancing the rights of persons with psychosocial disability.

The groups are registered by the Ministry of Labour, Social Security and Services. The membership include users, survivors and caregivers, representing both men and women. Coming from a mostly rural area, in terms of occupation, many members are small scale traders in the local market, farmers, carpenters and casual laborers. Additionally, a few of the members are professionals working in different sectors.

The support groups have adopted a model where persons with psychosocial disability are not passive but rather active in demanding their rights and finding opportunity to live meaningful and productive lives on an equal basis with others in spite of their disability.

Nakuru Support Group
The group was established in March 2013 with the support of the Rift Valley Provincial General Hospital in Nakuru town. Currently the group has 16 members who are mainly drawn from within the suburb of Nakuru town. They meet once, every last Friday of the month at the provincial General Hospital in Nakuru town.