Eradicating stigma & marginalisation around Down syndrome

The Impact of Casual Day in your Beneficiary Community.

Your R10 in action! Featured beneficiary: Down Syndrome SA

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301CE191-526E-4674-95E4-74219FB6E188The incidence of Down syndrome is estimated to be 2 in every 1 000 live births in South Africa. It is a chromosome disorder that is caused by an abnormality in the genetic material, which results in delays in physical and intellectual development of the child.

Down Syndrome South Africa is a national beneficiary organisation of the annual Casual Day fundraising campaign and the umbrella body of all Down Syndrome associations across South Africa. These funds will be used to sustain the organisation’s work in the community.

Says Ancella Ramjas, National Executive Director of Down Syndrome South Africa (DSSA), which has its head-office in Bruma: “Although it cannot be cured, people with Down Syndrome benefit from loving homes, appropriate medical care, early intervention, education and vocational services. DSSA is a non-profit organisation rendering services and support to people with Down syndrome and their families through eight branches in five provinces.

“The exact cause is currently unknown. It is not related to race, age, religion or socio-economic status and it is one of the most frequently occurring chromosomal disorders. Part of DSSA’s work is to promote awareness and understanding of the condition. We also work to improve the quality of life for those with Down syndrome and we include persons with other intellectual disabilities.

“The majority of people with Down syndrome fall into the mild to moderate range of intellectual disability. Women over the age of 35 are at a higher risk of having a child with Down syndrome, nevertheless, more than 80% of children with Down syndrome are currently being born to mothers under the age of 35,” she explains.

“We appreciate EDE26145-5E1A-4AE1-A954-B5F4D4E1FCF2each person who bought a Casual Day sticker. Your R10 will be used to do DSSA’s work which includes advocacy and lobbying to parliament and government on the rights of persons with Down syndrome and other intellectual disabilities; developing and dissemination information through various forms of media, and raising awareness. We do not get any funding from government, which is why your help is so important to us.

The money is used primarily

• to reach people in the rural areas, enabling outreach co-ordinators to go out and identify families who have children with DS and other intellectual disabilities. Outreach workers visit hospitals and clinics in their area.
• to establish outreach support groups and empower families with accurate information regarding their child’s condition and educate them on where to access early stimulation programmes.
• to train parents on how to do stimulation should they not be able to afford to attend their clinics on a regular basis.
• to assist with applying to SASSA to get a child dependency grant.
• to explain their rights in terms of their option to send them to special schools versus mainstream schools and vice versa.
• to educate them on their rights and their child’s rights.

“The branches have a high level of independency and their resources and infrastructure may vary, but the outreach groups in the rural areas of Limpopo, Mpumalanga, North West and Northern Cape provinces rely heavily on us as DSSA for financial support.

“The money received via Casual Day is used to keep the outreach co-ordinators in our employment, assisting their members with transport cost to attend meetings and workshops as most of the members are unemployed single mothers and grandparents. Essential monthly expenditures area also covered. Essential monthly expenditures are also covered,” concludes Ramjas.

Says Wilna Gates, National Organisational Development Officer: “Sustainability of support groups is very important. That is why DSSA launched the self-help groups so mothers are empowered to go out into their communities and help other mothers in similar positions in the community – so together they have a strong voice in eradicating stigma and marginalisation in their community.

“To encourage regular attendance of these meetings DSSA has to subsidise transport costs and refreshments as an incentive. The aim of DSSA is that these support groups will in the end be strong enough to sustain themselves.”

“As a national organisation we link and work closely with and are members of Down Syndrome International, Inclusion International and the International Disability Alliance, which links directly with the United Nations.”

To find out where all the branches of DSSA are, call 0861-369-672 (DOWNSA)

To support Down Syndrome SA, get your stickers from dssa.odo@icon.co.za

About the Author

Andrea Vinassa

Andrea Vinassa

For more information, photographs and publicity material call Andrea Vinassa / Media co-ordinator for Casual Day Cell: 079 089 9835 Landline Cape Town: 021 790 6698 \ Landline Edenvale: 011 609 7006 Email address: andrea.flashpoint@gmail.com

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