012 664 8871 dsat@downs.org.za

Chairperson’s Report 2012/2013

Introduction

The current Board of Tshwane Down syndrome Association is at the end of its second term. It is a difficult task to be a chairperson of a voluntary and non-profit organization. We know that there are always too many needs and not enough resources to meet them. I also wish to thank the management team comprising Ancella Ramjas, Rinske Pouwels and Zelna Barends, the assistants in the outreaches, all our sponsors and everyone who makes it possible for the association to function for their persistence and selfless contribution to the well-being of people living with Down syndrome in the greater Tshwane municipality.

Sadly, Petra has tendered her resignation effective 28 June 2013. Our loss is Johannesburg Branch’s gain. We wish to thank her for all her hard work done for this branch.

DSA Tshwane also underwent a lot of administrative improvements in the running of the association, which include accountability and better planning. It is the hope of the board that these measures will assist in the improvement of service delivery to people with Down syndrome in the Pretoria/Tshwane area.

The Tshwane branch was fully engaged over the past year with the following qualitative events and activities:

Young Adults Year End: 15 November 2012

This function proves to be the highlight of the year for the young adults as this is the only time they get to dress up. The Young adults of the Tshwane Down Syndrome Association have had a full programme of engagement with various activities organised for them and with them. This is a programme that continues to add value to lives of our young adults with Down syndrome. At R150 per head they were treated to a full three course meal and danced the night away to the sounds of Kurt Daren and company.

Christmas Party: 23 November 2012

Thanks to various volunteers and the City of Tshwane(COT) who sponsored busses to transport families from around Tshwane to attend the Christmas function. The function was meant to be held at the (COT) sponsored venue of Zita Park, Garsfontein, but had to be moved to the hall of the association due to rain. Despite the poor weather the children had a remarkable time being entertained by Father Christmas and received wonderful gifts and fruit hampers sponsored by Mr. George Senosha from Pick n Pay Soshanguve. Ijaba Security Services provided hot dogs and party packs for the children.

Special Olympics: 17 February 2013

A group of mothers with young children were invited by Special Olympics to participate in the training of certain sport activities geared towards the young ones. The event was held in Hammanskraal and the children were introduced to games through play, some toys and equipment were given to the branch.  There were children from special schools in the area and those that we transported to the venue. We thank Dr Cathy Makobe for arranging this sponsorship with Special Olympics South Africa.

International Down Syndrome Day: 21 March 2013

Ancella and Zelna hosted an awareness day in Mamelodi on the 13 March in celebration of International Down Syndrome Day. The focus of the day was to educate the community on how to include persons with disabilities into their communities. Oasis Water sponsored water to families and other NGO organizations that participated on the day.

Over a hundred people participated in the 2013 International Down syndrome Day. This time it was celebrated in the form of a health day and was held at Maranatha Bana Special School in Centurion. There were many specialists who explained to parents on various ailments and conditions that our children with Down syndrome often experience. There was also free screening from Dentists and the parents were treated to free massages by the Tshwane University of Technology students. There were also speakers from the University of Pretoria, an Ophthalmologist, a geneticist pediatrician, dentists, physiotherapists and music therapists who shared information with parents.

Morula Marathon: 30 March 2013

DSA Tshwane partnered with Morula Running Club, Pick n Pay Soshanguve, Tshwane TV to educate the community of Tshwane through a marathon. The event was held in Soshanguve and was attended by over 500 people. The marathon organisers also donated R5000 to DSA Tshwane from the proceeds of the day. The event received publicity on Morning Live, and several local newspapers, Soshanguve Radio and the Daily Sun newspaper. The cheque was handed over to the association, Record newspaper was on hand to capture the moment and parents and children were treated to tea and sandwiches provided by Pick n Pay. Again we thank, Mr Senosha for his selflessness.

Mother’s Day: 4 May 2013

A Special Day for Special Mums, a day to be spoilt. 12 mothers of Children with Down syndrome were treated to a Mothers’ Day motivational talk and pampered to facials and pedicures provided by the students of Centurion Academy. The event was organised in lieu and recognition of the demanding nature of motherhood, more especially to children with special needs.

D.A.D.S

15 Fathers of children with Down syndrome were treated to a braai on Saturday 1 June 2013. Following the event the group of fathers of children with Down syndrome decided to start a support group and learn from one another. As a form of constant communication they have set up a whatsapp group. Fathers are encouraged to participate in this group for their benefit and that of their children.

Parent Information Mornings

This is the second year that the Parent Information Mornings are organised. Parent information mornings are hosted every second month. Attendance of parents is often a challenge. However, we have decided that no matter how discouraging such may be, we shall soldier on. Various topics are discussed and the latest was how to deal with challenging behavior. These topics are delivered to assist parents cope with the challenge of raising children with special needs.

Fundrasing
Winters Ball: 6 June 2013

Once again the Winters Ball was held at the Voortrekker Monument. According to our records this is the breakdown:
Paid to us: R663 570.00
Expenses: 177 299.00
Profit: R486 271.00

Petra’s Commission: R46 680.00
We have asked for further clarification from Petra Le Roux and that has proven difficult to attain before this meeting.

Financials

For the period May 2011 – May 2012 Lotto approved an amount of R765 620.00. Money left over from this period is R99 057.99. Lotto application for 2012 only opened up in December 2012 and at this stage we have not received any money. Lotto application for the year 2013 is not as yet open. The association has two investment accounts which is money raised through fundraising projects: R994 335.00 (Investment Advantage) and R134 680.00 (Fixed Deposit). The association has been in consultation with PSG Investment Services to investigate better returns.

Art Classes

Art classes are hosted every month and different themes are provided for the children to paint. Art classes are aimed to draw the children between the ages 7-13 and 14-17. Parent response to this service is also extremely poor with only 3 children attending. Funding for the art project was secured through the Carl and Emily Fuchs Foundation to the total of R40 000.00. This money is used towards the purchase of art materials and to pay for the services of an art teacher. We like to thank Wilna Kerkhoff for offering her services.

Self Advocate Group

“Voices of the Future”, the objective of the group is to develop essential life skills to enable them to speak up for themselves and to provide them with tools needed to function optimally in society. The group consists of 12 Self-Advocates. With the resignation of Petra Le Roux the association is glad to have acquired the services of Miss Annelise Boot to take over as facilitator. The group meets on the 3rd Saturday of every month. This project also falls under the funding of the Fuchs Foundation.

Sokkies

Sokkies continue to take place every second month for the young adults and is a platform for young adults to enjoy a social evening amongst people who are differently abled. Residents from Irene Home, Pathways, Ons Huis are also invited to join the functions. Parents of young adults who attend these functions, are urged to participate to ensure the continuity of this and other services. The office staff and the board cannot do it all alone.

New Births

The stork has been relatively quiet as far as babies with Down syndrome are being born. Only (4) families contacted the office seeking advice. However we seem to have picked up a number of new births at the local provincial hospitals.

General Queries

The office received around 90 calls for the year ranging from home placements, information on Down syndrome, volunteer services, therapy, psychology and social services.

School Placements/School Visits

Ten (10) schools were visited this year which consists of both mainstream and special schools. School visits are made to support teachers who have children with Down syndrome in their classes and also to visit potential schools for placement.

Thirty (30) families contacted the association seeking school assistance around Tshwane, Mpumalanga, North West and Limpopo. Assistance is provided by providing contact numbers of schools in their areas and also making contact with support groups.

Awareness

Awareness forms an important focus around International and National Down Syndrome Day but it is important to link up with government departments in ensuring that correct information is passed down to their employees. The association is pleased to have been part of the Department of Health in their recent training of health promoters and professional nurses on genetic birth defects. Ancella Ramjas presented talks on “Down syndrome and how to break the news” as this is an area that is still not handled in a professional manner.

On the 20 July the association was invited by the City of Tshwane for Nelson Mandela Day at Moses Madiba Stadium in Attridgeville. Thanks to North West Bus Service all our support groups and Self-Help Groups were able to attend the function.

Media

The long association with Radio Ripple has come to a close and The Down Syndrome Association would like to thank Radio Ripple for all their support over years.

Swimming

In June and July swimming lessons were moved to the Hillcrest pool in Hatfield due to renovations at the indoor pool. Lessons has once again resumed at LC de Villiers Sports Centre every Saturday morning. Twelve (12) swimmers are currently involved in the swimming programme.   

Conclusion

As stated earlier, this is the second and last year of the term of this board. I wish to thank all the board members who served diligently: Mr Marcel Niewenhuizen, Ms Tania Collins, Mrs Maria Mohajane, Mr Mario Visagie, Mr Hans Pouwels, Mrs Santhini Naidoo and Mrs Debbie Bester. I also wish to thank the office staff Mrs Ancella Ramjas, Mrs Rinske Pouwels and Ms Zelna Barends. It has been a challenging two years in which we had to reign in a lot of things in order to tighten our governance. It has not been an easy ride as change is always painful. I can assure you that all the changes were necessary to ensure the health of the organization going forward. The straight and the narrow road is often the least comfortable and that is where we have been heading towards in the past towards two years.   

In June, I was elected Chairperson of Down Syndrome South Africa (DSSA). Due to this reason and the mounting work pressures, I have no choice but to declare that I shall not be available to serve on the next board. I will however, be available for consultation and guidance as and when needed by the newly elected board. I shall be working closely, in any case, with whoever is to be elected as new Chairperson of DSA. I wish Down Syndrome Tshwane/Pretoria the best in the future.

Thabang Chiloane
Chairperson Tshwane DSA