012 664 8871 dsat@downs.org.za

Chairpersons Report 2015/2016

Introduction

Down syndrome Pretoria had an exciting year. At our BGM in August 2015 a new board was elected. In September the committee had a Strategic planning to discuss our way forward. Each committee member took on a portfolio.

Magda Lourens Chairperson and Special Olympics and Self advocates and training

Marcel Nieuwenhuizen Vice chairperson and DSSA

Baatile Komane Treasurer and Khanya support group

Willie Els Secretary

Dhesan Naidoo Jeans and Tekkies Teenage club

Sam Masilela Fathers group

Marinda Lingenfelder Parent support

Louis Lingenfelder Self advocate adult club

Hans Pouwels Casual Day

Carolien Potgieter Sport club (co-opted)

When Rinske resigned Karen van Rooyen started working as Admin and Finance officer in the office. Together with Zelna our outreach co-ordinator, they assisted with administration, enquiries from the public and new families, dissemination of information to the more or less 300 members, raising awareness and playing a vital role in the organising and rolling out of the annual programme. As a board we decided to focus on involving families in age appropriate / focus area clubs and two new clubs were started this year namely the Jeans and Tekkies teenage club and the Sport club. These clubs are not funded / sponsored by the Association and each function done by the clubs for the families has to be self sustaining which means own transport and a fee to be paid for the activity presented at the function. These clubs are open to all families and members of the Association.

OUTREACHES

We presently have 2 outreaches gathering weekly for free therapy in Ga-Rankuwa and Lyttelton. We had to scale down this service due to financial constraints which is very sad. Furthermore Zelna Barends, our outreach co-ordinator is also meeting with 4 support groups once a month. Khanye self help group, in Atteridgeville is coordinated by Baatile Komane and running actively as we speak.

PARENT SUPPORT

Parents of young children gathered every two to three months for parent support talks. The kids have art classes during that time. Our Parent support co-ordinator on the Board, Marinda Lingenfelder organised a wonderful “feelings” morning for all the mothers. The parents also stay in touch via a whatsapp group and advice and guidance is shared in the group. The Fathers also gathered for a 4X4 day and it provided an opportunity for fathers to bond with their children.

JEANS AND TEKKIES TEENAGE CLUB

This is a new group who got together from the beginning of the year for social get together functions such as a sokkie / dance and a ten pin bowling evening. We hope that this group will be the start of a strong group feeding into the adult group. The board members acting as coordinator of this group is Dhesan Naidoo.

ADULT SELF-ADVOCATE- AND SOCIAL CLUB

Louis is our self advocate Board member voted on by his friends last year during the BGM. The self advocate club gathered for a lovely year end function, a wine tasting, 4×4 day, a potjiekos and powerpoint day!!! Tania Collins facilitates the group. The self-advocates / young adults also got involved in fundraising initiatives with Louis’s Box project with which money is collected by the older kids for the younger kids with Down syndrome for therapy or for the sportclub. The sokkies remain popular as ever and occur bimonthly. The group had the usual Spring Dance, Year end function and Valentines Dance.

SPORT CLUB

We started a new sport club in January 2016 and enrolled with SASA -II for athletics, table tennis and swimming. We co-opted Carolien Starke as board member for this portfolio. Enrolling through SASA-II is the only avenue for our kids to participate internationally. Table tennis practice is done on Wednesdays at the Association. Swimmers do individual swimming training. Our Special Olympics swimming group is going strong and have participated in monthly regional galas. Already some of our star athletes were selected for the Gauteng and national SASA-II teams and participated in the Trisomy games in Italy.

AWARENESS

Through the year a variety of awareness talks were done mostly by Zelna at clinics, hospitals, schools etc. Radio talks were also done throughout the year on Groot FM and RSG and a variety of articles were places in local newspapers (Die Beeld and the Rekord) Karen makes sure our website is up to date and exciting articles are placed on our facebook National Down Syndrome Awareness Day was held at Derdepoort Public Resort and families gathered for a braai, horse-riding, swimming and picnic fun. WDSD was celebrated on the 16th of April with a Warrior Type Obstacle course fun day with friends and community members at the Centurion High school grounds.

TRAININGS AND NEWSLETTERS

An electronic newsletter is sent out to all the members every 3 months with news and updates from all our activities. Two informative trainings were done for parents namely an Inclusive education workshop in November 2015 for a small group of parents who requested the training and a Sexuality mini symposium in July 2016.

A sponsor gave a grant for training of adults with Down syndrome and when we approached the Centurion Academy they were very keen to adapt a course for adults with Down syndrome. We can see that this link will open doors for us in future. Two training sessions on “The introduction to computers” will be done in September 2016 for young adults with Down syndrome who can read.

FUNDRAISING

The Pretoria Branch made money from selling Casual Day stickers for 2015 and this placed us in the privileged position of the branch winning the bonus for selling the most stickers out of all the DSSA branches. A Fundraising casual dance is planned for 2 September this year. We are awaiting feedback from the Lotto. We are actively submitting applications for funding to other funders as we are in dire need of maintaining our services. Funding at this stage seems to be our biggest challenge as our last payment from Lotto was in December 2013 for the period 2012. This leaves us in a very problematic financial position. While small funding projects have generated some income it is not sufficient to carry our major costs. Our largest expenses are the outreach projects and staff and hopefully we can secure funding for these projects soon.

CONCLUSION

Our focus this past year was to get back to basics and to raise the bar re our support service. We know that the role of the Down syndrome Association is vital in more ways than one and therefore the board and office staff are motivated to make sure that we stay relevant playing a key role in carrying out the mission and vision and work streams of the umbrella organisation Down syndrome South Africa, of which we are proud members.

MISSION:

IMPROVE THE QUALITY OF LIFE FOR PERSONS AFFECTED BY DOWN SYNDROME

EXTERNAL VISION:

EQUAL ACCESS, DIGNITY AND RESPECT FOR PERSONS WITH DOWN SYNDROME

INTERNAL VISION:

COOPERATION WITH TRANSPARENCY AND ACOUNTABILITY FOR COHESION AND TRUST

WORKSTREAMS

  • AWARENESS
  • ADVOCACY
  • ACCESS TO HEALTH
  • ACCESS TO EDUCATION
  • ACCESS TO THE WORLD OF WORK