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THE KENYA PSYCHOSOCIAL DISABILITY WATCH EDITION - AUGUST 2013

BEST PRACTICES: GRASSROOTS ADVOCACY AT ITS BEST

n 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 mechanism in other regions for users/ survivors became a top priority.
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. This is in line with the vision of the organization to establish peer support group networks in each county by 2018. These support groups will empower persons with psychosocial disabilities so that they can be involved in decisionmaking 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. It also helps them to claim their rights and many do recover in the process. Support groups help them to learn about their human rights, condition and help them to encourage one another and to work together on common objectives. Since then, USPKenya has walked with these peer support groups; in building their capacity through right-based trainings and imparting advocacy skills. Now, not only has the challenge of distance been addressed; but we have empowered self-advocates to claim their space within their respective communities. This Kenya Psychosocial Disability Watch edition celebrates best practices from one of the groups in Nyeri County showcasing their achievement in efforts to build vibrant grassroots movement which is a key pillar of the organizations vision. That USPKenya has been able to start and boost through training six peer support groups in four counties has been commendable seeing how much it has enhanced the lives of persons with psychosocial disability. Slowly but surely persons with psychosocial disability are not only starting to claim their space in the disability movement but are becoming confident self-advocates and by accumulating knowledge on psychosocial disability are helping to deal with the issue of stigma that is rampant in society. And this is not only happening in the urban areas, no! The Karatina Mental Health Group in Nyeri County is leading the way to show that rural areas have as much opportunity as urban areas in demonstrating best practices

Kenya Psychosocial Disability Watch Edition May 2013

in the area of psychosocial disability. Karatina Mental Health Group received its certificate from the Ministry of Social Services in August 2012. It consists of members from Karaba and Karatina totaling over 60 members. The members 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 group is chaired by Agnes Wangechi. The secretary who also doubles up as the Chairman of the

USPKenya board is Andrew Kimondo. The treasurer is also a person with a psychosocial disability. The group has been receiving rightsbased trainings through USPKenya in the area of psychosocial disability, mental health covering diverse topics such as: understanding mental health; living and caring for a person 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).

Lucy Mwihaki, an official in the group says that such trainings have improved the capacity of members to be better self advocates. It is this self confidence that has seen the group adapt a model that can be replicated by other peer support groups. The Karatina Peer support group has 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. This approach has been successful as demonstrated by the following key engagements at the grassroots level.

Exemption from paying County-Council Levy Fees

embers who are in the support group do not pay the county council levy fees in order to run their trade in the market. However, it never used to be like this. What did the group members do?
We knew that the people with physical disability did not pay the town council levy and we had to also state our case to the town clerk and through the trainings we have received we knew that we were persons with disabilities and should be treated on an equal basis with others. We had to make this known to the town clerk in order to get exemption so that our members could have extra money to meet their daily needs and cost of healthcare, said Lucy who led a delegation to the Town Clerk offices. The main problem however for the group was that unlike persons with physical disability who have cards identifying them as persons with disability and whose disabilities are visible, persons with psychosocial disability had not been issued with such cards and this was compounded by the fact that the disability is invisible. But where there is a will there is a way and they could not back off and let members be discriminated; because they understood that persons with psychosocial disability should be treated on an equal basis with others without prejudice and discrimination. It is for this reason that we spoke with the doctor in the hospital so that members from our group could be assessed and issued with a form to show the town clerk that they are persons

Every trader in the market has to pay a certain fee in order to run a stall in the market. For the traders with psychosocial disability, this in itself is a challenge as many of them live in poverty. Some are also unable to engage in business activities throughout unlike their counterparts. In addition to meeting their normal daily needs like food and shelter, most persons with psychosocial disability have to put into considerations costs of healthcare e.g. medication, counseling and hospitalization. Due to this, there was a need to advocate for a waiver on the fees being levied by the County Council.

Kenya Psychosocial Disability Watch Edition May 2013

with disability hence are exempted from paying the county council levies but we are still following up on the cards, noted another member in the delegation. Additionally, through this form, the members are now engaging with the Department of Gender and Social Services to be given grants to invest in livelihood projects.

Grace Wangui who sells farm produce in the market is happy that she does not have to pay the market levies saying that there was a time she could not conduct business in the market due to the inability to meet the city council levies. This, as she said, would make her beg for food as she did not have an income. Now I am able to make money and do not have to beg anymore.

REDUCED COSTS AT THE HOSPITAL

etting medicine was another challenge that the members in the support group faced. It is well known that there are members who got sick and probably had no money; so when they went to the hospital they could not be treated and normally they will be turned away. Usually when one went to the hospital; they paid a fee of Sh. 50 for the hospital card, Sh. 50 at the clinic and Sh. 50

for an injection or medication. We spoke with the doctor in charge and explained the challenges our members face, said Kimondo. It was then agreed that for psychiatric patients in the support group, there was no need to go through this process. Their cards are put in a common place so that when they go to the hospital they are exempted from paying for the hospital card. Additionally, if there is a dire

case, they are not turned away rather the doctor will still attend to them. Now most members are happy that they can access services at a lower cost and as members of the support group are assured that even if they require medical attention and have no money; they shall not be turned away from the hospital without treatment.

Kenya Psychosocial Disability Watch Edition May 2013

BURSARY FROM THE COMMUNITY DEVELOPMENT FUND

nother area where the group has made strides as a result of the trainings received that have empowered them is to also claim their space as persons with disability in the area of education within the Community Development Fund (CDF). Our members face a lot of financial difficulties and as a result some of the children drop out of school, said Agnes, a member. As officials they felt that they also had to take advantage of the bursaries offered in the constituency. We decided to pay a visit to our area Member of Parliament to state our case. It took us three months to get to talk to him; in all those days we tried and did not

manage we did not give up, recalled Lucy. Eventually when we got to talk to him; we explained that we are members of a group of persons with psychosocial disability and needed to benefit from the CDF just like any other person in the constituency. Currently there are four children in high school that have benefitted from the bursaries from the CDF whose parents are persons with psychosocial disabilities in the support group. Alice Wanjirus son benefited from the bursary. She is a casual labourer and said that she was very happy that she had got a break from begging teachers not to send her son home because of lack of school fees.

EMPLOYMENT

dditionally, the support group has been able to advocate for three of their members to get casual employment at the town council services. Agnes Wangechi, the chairlady of the support group in Karatina is happy of the strides they have made and is grateful that USPKenya has invested time in training them on human rights. She says that now in the community many people accept their members as persons with disability as opposed to a while back when all they could think of when they saw them was that these were mad people. She is also happy that even the government, through the Member of Parliament, the CDF, the town council and even the doctors in charge at the district
Kenya Psychosocial Disability Watch Edition May 2013

hospital are also gradually respecting their human rights while at the same time promoting their inclusion within the family and community system as persons with disabilities.

Changes in interaction
The officials of the support group acknowledge that so much has changed among members as a result of continued interaction between members and receiving training from USPKenya. For example Andrew Kimondo, an official in the group, says that initially when caregivers came to the group many did not know how to live with the affected person; how to handle them when in a crisis; but with time, as he sees it, they have some sense of direction; of how to handle and care for their loved ones. The area being in the town, Andrew says that now there are few people loitering in the streets as a result of them being unwell. Even in the support group itself, some of the members initially used to be a little unsure but Andrew asserts that with time; there is a lot more awareness of what is expected of them, and there is a willingness to learn and understand their conditions.

Mechanisms of addressing abuse within the community set-up

The support group has encountered cases where members are abused through violence in their homes by virtue of having a psychosocial disability. The group has embraced a dialogue model in these cases where they pay a visit to the affected homes and dialogue with the family members to understand the origin of violence on the affected person. They involve the local authority and the church in such cases. The approach is not to blame the abusers, but to understand why they resort to violence and helping them to respect the human rights and inherent dignity of persons with mental health conditions.

THE FUTURE

or the support group; measures to keep going strong are evident from the officials willingness to run the support group and the commitment of the members. The group has a bank account. Members contribute Ksh. 100 on a monthly basis which is deposited to the group bank account. The officials are responsible for operating the account within the mandate given by the members. The peer support group is also seeking other ways of ensuring the sustainability of the support group.

This will be realized through the following key strategies: The group is currently submitting proposals to the National Council for Persons with Disability, the CDF and Njaa Marufuku (Government agricultural programme to eliminate hunger). The group is also considering applying for funds from the Women Enterprise Fund since the majority of the members are women. They are also members of a Community Based Organization (CBO) which consists of other self help groups within the constituency. The main purpose of the CBO is in order for the constituent members to have leverage in fund raising at the grassroots level and also provide an opportunity for grassroots organizations to network with each other.

Kenya Psychosocial Disability Watch Edition May 2013

The CBO is also a member of a Non-Governmental Organization which is coordinating activities at the county level.

County Level (Non-Governmental Organization)

Donor organization at the constituency level

Constituency level (Community based organization)

Donor organization at the constituency level

Ward Level (Karatina Mental Health Group)

Ward Level (Grassroots organization)

Ward Level (Grassroots organization)

A thank you to the partners

USPKenya expresses gratitude to the Open Society Foundation through its Disability Rights Initiative for their technical and financial support that has enabled us to create a vibrant grassroots movement in four counties in Kenya. It is wonderful to be part of a bigger cause of promoting vibrant and tolerant democracies.

Kenya Psychosocial Disability Watch Edition May 2013

Pictorial Section
The four counties

roup Support G ty n u o C mbu of the Kia Members

Nairo bi Co unty S uppor t Gro up

t Group ty Suppor n u o C i r e Ny

Members of the Nyeri County Support group

Kenya Psychosocial Disability Watch Edition May 2013

airobi ing in N in a r t a nties in the cou ll a m o r rs f Membe

Michael Njenga conducting a home visit.

Michael Njenga addressing USPKenya members in Nyeri County

Nyeri county group meeting

Users and Survivors of Psychiatry in Kenya.

(USPKenya)
P.O. Box 10071 00100 Nairobi Kenya. Tel: 0722 884565 Email: info@uspkenya.com Website: www.uspkenya.com
Kenya Psychosocial Disability Watch Edition May 2013

Members of the Nakuru support group

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