Down Syndrome South Afica


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Down Syndrome South Africa is extremely grateful to LEV from Denmark for the financial support and co-operation for the Break the Barrier, Strengthen the Township Project 2011-2014. This project has certainly enabled our organisation to provide very much needed support to our members.  


The 'Township' project came about as a result of liaisons and partnership between DSSA and LEV which is a national organisation based in Denmark for organisations such as DSSA and works with people intellectual disabilities and their families. We are grateful to LEV for their partnership in this project. The project has many levels of activities which are listed below. Many of these activities resulted in the development of training material which you can download.

Desk Study of Legislation for People with Intellectual Disabilities

The Desk study of the South African legislation and policies related to People with learning disabilities was finalised in February 2012. Training on the legislation took place during our 2013 Annual General Meeting and Board meetings. This training will take place at a local level. For a copy of the study please email the Project Manager Mr J. Dikgale on

Baseline Study

The Baseline Study was conducted in selected townships identified for the project and the method used to gather was focus group discussion and individual interviews.

The following townships were visited during April and May 2012:

Orange Farm, Johannesburg in Gauteng.

Attridgeville, Pretoria in Gauteng.

Ikageng, Potchefstroom in the North West Province

Mwamitwa and Mandlakazi, Tzaneen in Limpopo

Kwa Guqa, Witbank in Mpumalanga

The Baseline Report was finalised in 2012. 

Most recent Board of Directors Field Visit Report (Including Project Manger: John Dikgali, Independent Consultant: Thabisile Levin, National Director DSSA: Vanessa dos Santos)

The field visits are monitoring and evaluation processes which afford the B.O.D to interact with local duty bearers, community leaders, parents of people with Down Syndrome and People with Intellectual Disabilities (PWID) and representatives from the education and the health sector. It also affords them an opportunity to see the conditions of life for people with Down syndrome and PWID and their parents in the townships. The following selected townships were visited.

Ikageng Township, Potchefstroom - 29 June 2012

A meeting was held at Tshwaragang Disability Centre and the local government officials, police, community representatives and parents of people with Down syndrome and PWID attended the meeting. DSSA was represented by Reggie Steenberg, Thabisile Levin, John Dikgale, Elizabeth Vana, Betty Mutloane and our guest from Inclsion Africa (Kenya) Shikuku Obosi. The discussions in the meeting focused on the challenges faced by people with Down syndrome and PWID in the townships. It was an opportunity for the Local Government Officials and Down Syndrome South Africa (DSSA) representatives to gain an insight of the situation in the township of Ikageng for people with Down syndrome and PWID as well as their families.

Zwide Township, Port Elizabeth – 17 July 2012

The information session was held at Zwide Old Age Home and the participants were the local police, speech therapists, teachers, DSSA representatives and parents of people with Down syndrome and PWID. A total of 74 people participated in the session which was addressed by Vanessa Dos Santos . The main topics discussed were self help groups, education, disability grants, and employment. The participants were given the opportunity to ask questions and the DSSA representatives responded positively to the participants.

Bloemfontein – 23 July 2012

The meeting was held at the University of Free State and the purpose of the meeting was to introduce the Project to the Bloemfontein branch personnel and parents. The meeting was attended by Dorothy Russel, Klazinah Hatting, Rhoda Bruiners, Rebecca Mosina, Liza Pono, Vanessa Dos Santos, Tineke Boshoff and Jabulane Dikgale. Vanessa Dos Santos explained the process of Self help Groups (SHG) and the branch personnel agreed to look into ways to start a group. An Activity plan was drawn and the first activity would be the identification of parents to participate in the group and place an advert in the local newspapers and radio station about the self help group. The first meeting with parents to explain the SGH and Project will be held on the 15 September and the core training with the existing group will be held on the 10 November 2012.

Kimberley – 24 July 2012

The interactive meeting was held at the Kimberley Hospital. Midwifery students, parents of people with Down syndrome and PWID as well as DSSA representatives participated in the meeting.  Vanessa Dos Santos addressed the participants and encouraged the parents to be part of the self help groups to enable them access to the benefits of developmental processes so that they can demand and gain their rights at different levels and different platforms.

The Mid-Term Review

The review was aimed at providing a preliminary mid-term overview of the work of DSSA in terms of implementing the LEV Township Project. The review was carried out in two branches in Gauteng. Parents of PWID were interviewed in Orange Farm and Kalafong Hospital in Attridgeville. The review was finalised and sent to LEV.

Pilot Self Advocacy Training

The Self Advocacy Training took place in Port Elizabeth on the 16 -17 November 2012. It was facilitated by Vanessa Dos Santos and Tineke Boshoff and 18 young adults were trained over two days.

National Advocacy training

This training took place in Johannesburg over a two day period 18/19th May 2013. A total of 33 people attended. (people with Intellectual disabilities and their support persons). The training provided an opportunity for the Self Advocates to nominate and elect a new chair and vice chairperson which is Tanjiwe and 

Networking between Self Help Groups

The networking between self help groups took place in Limpopo and the Eastern Cape. On the 04 May 2013 the Polokwane Self help group hosted the Tzaneen Self Help group at the Reakgona Centre in Polokwane. Twenty six parents shared their life experiences and how they overcome challenges they face in their communities.

On the 25 May 2013 the Port Elizabeth Self Help group hosted the East London self help group in Zwide Township, Port Elizabeth and twenty parents came together and shared their life experiences.

Self Help Groups Guidelines (pdf download)

A Self Help Group Manual for developing and running a SHG was developed and printed and all particpating groups received this training manual during a training workshop held in Johannesburg in September 2011. 

Self Help Groups cannot be built overnight, in some branches the formation of groups was slow and time consuming. In most areas once the group members understood the concept and realised the benefits they started to attend meetings regularly. They showed loyalty throughout and will never leave their groups. The successful functioning of most groups was influenced by branches which played a role of motivating, nurturing and equipping the groups to the stage of self-reliance. The branch co-ordinators had a crucial role contributing to the group’s success. Most groups have stabilised in their functioning and internal factors like good leadership and co-operation among members is determining the pace of growth and development. Social interaction has improved among the members after joining the groups.

Most Self Help Groups have learned to use the planning model and have assessed their situation. They have identified activities that will assist them to address their challenges in their communities. The reports sent by some branches did not reflect issues about the Self Help Groups as per project requirements, in some instances the reports contained issues related to support groups. A template for reporting activities of Self help Groups was designed in May 2012 and most groups started to use it. There was little correlation in the activities they intended to do and what they will end up accomplishing. There were challenges in organizing some SHGs into cohesive groups as members exhibited many forms of social discomforts. Some people in the groups did not bond easily and lacked self confidence.

The initial time taken for group formation in this context could be quite long. Another problem was the fear that a powerful few in the group would dominate others. Groups would need considerable training and capacity building before they could function effectively and democratically. In such situations, the co-ordinators helped to facilitate cohesive and democratic group formation. The lack of motivation in the Self help groups to undertake their own development programmes was another barrier; most groups seem to depend on co-ordinators for each and every decision. This cannot be considered as a positive thing, the strategy of gradual and slow withdrawal of the helping hand of the co-ordinators, seems to be the ideal mechanism for making the group self-reliant.

The most powerful attributes is that the creation of Self Help groups has been effective in improving the levels of awareness of the families and their ability to transform their lives.

Self Help groups herald individual empowerment and citizen involvement forming hybrid groups that mainly reflect self help characteristics. 

Self Help Groups in Selected Townships

Pretoria Branch (Attridgeville)

Attridgeville Self Help Group members have organised themselves into a cohesive group.

They appointed Baatile Komane as their spokesperson and named their group Khanya Support Group. They adopted the name Khanya (meaning to shine the light into their community).The first group meeting took place on 11 February 2012 and the project objectives were explained and what parents expected from the project.

They outlined their objectives for the year and agreed to hold monthly meetings at the Tswelopele Mental Health Centre. To dispel perceptions on how the community view their children with Down syndrome and to address the labelling of their children as “Zodwas” relating to the special school in Attridgeville that admits learners with Down Syndrome and to highlight the insensitive nature the health professionals disclose news of the birth of their children with Down syndrome they held awareness campaigns in the local shopping mall and at Kalafong Hospital. Other topics discussed in their meetings were their feelings in terms of acceptance by their families, friends and neighbours. The role of their husbands in bringing up the children and whether they must become part of the group. How can they reach out to the community and embrace other disability organisations in their area.

Johannesburg Branch (Orange Farm)

The Orange Farm Self Help Group is made up of women who are single parents and most of them are unemployed and face the challenge of raising their children on their own. The have organised themselves to face the challenges in their community and identified poverty reduction and empowerment initiatives. They identified three complementary activities that could promote economic opportunities, baking, sewing and beading. They had problems with start up finance and could not implement these activities. Through the group leadership of Doreen Moloke five members of the group were identified to participate in the Community Works Programme of the Department of Public Works. They participated in agricultural structure were they were taught about food gardening and social structure were they were involved in home based care. The programmes assisted in facilitating empowerment and removing social barriers that exclude women.

Witbank Outreach (Lynnville)

The Witbank (SHG) focused most of their efforts by lobbying the local government leaders to

address the challenges they face in their communities. Empowerment according to the group members extends beyond economic and social aspects, it includes participation in social activities and forum of decision making, legal and political empowerment. The most striking advantage of the group is that after joining the SHG most members had the confidence to engage the education department and local government officials about the challenges they face in the community. The doctor at SASSA offices in Witbank usually turned down applications for social grants for PWID, but the group members challenged the doctor about the applications. The group was joined by Nonhlanhla Malinga an employee at SASSA who is a parent of PWID to put pressure on the other officials to assess applications of for disability grants in good faith.

Kimberley Outreach (Galeshewe)

The Kimberley Self Help Group is made up of five parents of PWID, group formation process was slow and time consuming. Once the group members got the crux of the SHG concept they started to attend the monthly meetings. The group opted for vegetable cultivation in their backyards as a viable venture, it had many benefits as they could save money and get good quality vegetables and sell to the local community. Ntombi Ndlovu approached the department of agriculture to sponsor the group with seeds and fertilizer. The group has grown to ten members and they are active in empowerment activities in 2013.

Potchefstroom Outreach (Ikageng)

The Potchefstroom Self Help Group focused their efforts on forming a strong group, the SHG focus was to promote inclusion of PWID in community activities and lobby education officials about the challenges their children faced about schooling in their communities.

Betty Mutloane the outreach co-ordinator started a new career as a nurse at the Witrand Hospital. This was a great challenge for the SHG in Ikageng as Betty had less time to organise the group. Elizabeth Vana continued with the group activities and identified Themba Ntshalantshali to be outreach co-ordinator.  Elizabeth Vana agreed to mentor Themba with co-ordination of the group activities in 2013.

Tzaneen Outreach (Mwamitwa)

The Tzaneen Self Help Group focused their efforts by participating in economic activities as a way for poverty alleviation and empowerment. They started a baking project in a house of a community member. They divided themselves into two groups some members would bake the cakes and buns others would go and sell in the community. Some of the group members are involved in shoe making using recycled plastic bags. They share the returns of what they sold in the community and retain the other funds for the baking project. The other self help group was formed in Mandlakazi in 2013 to afford other parents the opportunity to also participate.

Down Syndrome South Africa’s mission is to reduce stigmatisation and ensure full inclusion of all persons with intellectual disabilities and their families by advocating for their right and needs. DSSA strongly believes in the added value of Parent Self Help Groups.


Download the training manual here

Down Syndrome South Africa has been financially supported by Landsoreningen (LEV) for the following projects since 2004:

1. Organisational Development & Capacity Building

This project entailed needs analysis of our branches as well as DSSA as a National body. Research and development of programs and training modules were done. This involved training of the branches staff and volunteers on Good Governance and Best Practice. The following modules were also developed and placed on the website under the tab EARLY INTERVENTION, they are:

  • The importance of Early Intervention
  • The Development and Communication
  • Social Development
  • Motor Development

2. Setting up Outreach Groups

This project involved strengthening our branches by setting up new Outreach groups. Seven of our branches benefited from this project. This entailed interviewing potential coordinators, employing them, training them, purchasing of equipment, and sourcing venue for the outreach meeting to take place.

The coordinators have been sourced from the areas that they will be working from. This ensures that they will not only be familiar with the area but language and cultural beliefs too. Once the outreaches were established and the coordinators were employed the project covered costs for an 18 month period. The role of the coordinators are to identify people with Down syndrome and other intellectual disabilities and their families in order to provide support and services such as: counseling, information and resources, early intervention and home programs, empowerment, therapy, and advise on nutrition and health as well as assisting in accessing other services such as grants, schooling etc. The above are provided at no cost to the families. Although the project came to an end this did not mean the demise of the outreach groups. In fact they still continue to grow each and every year and many people with Down syndrome and other intellectual disabilities and their families continue to benefit from these outreach groups. 

3. Strategic Planning & Development of Good Governance

The project entailed Strategic planning and development of the organisation. This took place with an independent consultant and members of the DSSA Board. 

A good governance workshop also took place, where all DSSA board members reviewed all

DSSA's governance documents and policies. An expert independent consultant took us through the correct process. These documents were finalised and adopted at our following AGM. This has provided DSSA with a strong foundation and guidance in terms of structure and governance. 

4. Self Advocacy Project 

DSSA established the Self Advocacy Movement of South Africa (SAMSA) where 19 young adults with Down syndrome and other intellectual disabilities were trained on their rights and to "Stand up and speak for themselves". These projects has also enabled us to link with other disabled people's organisations and government hospitals and clinics working in these areas to assist us in identifying babies and refer them to DSSA as soon as possible. 

The funding received for these projects has had a huge positive effect in terms of the development of DSSA. The above projects have had a huge impact on people with Down syndrome and intellectual disabilities, without this support it is clear that we would not have been able to achieve what we have during this time. 

5. "Break the Barrier- Strengthen the Township" Project 2011-2014

Currently DSSA is cooperating with LEV on the above mentioned project. DSSA and its branches/support groups have been actively working in certain township areas with South Africa for many years by developing and supporting outreach groups. However DSSA has identifies other townships as areas of concern as we do not have sufficient capacity to reach these townships and the families living in these areas.

DSSA together with Landsforeningen LEV realised that it is possible to include and develop a project by working in these township areas by developing Self Help Groups (SHG), guidelines, conducting training, establishing SHG and developing a baseline and advocacy strategy to be used by these groups.  

The purpose of the project is to empower families of and people with Down syndrome and other intellectual disabilities the selected townships in South Africa by providing the necessary tools in order to do so. The project will work with awareness raising the townships amongst the parents through the creation of parents self help groups and thereby strengthen their ability to see possibilities and rights for people with Down syndrome and intellectual disabilities, and their families in the legal framework in South Africa will be improved. 

Finally the capacity of DSSA to do outreach work toward families living in the townships will be improved as well as DSSA's capacity to do advocacy work for the poor segment of families affected by a child with Down syndrome or other intellectual disability towards national authorities. 

Training of some of the Self Help Group (SHG) coordinators on how to set up a SHG in their area.