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Mar 19
World Down Syndrome Day: Care, collaboration and a holistic approach to living with disability

​By: Lunga Memela (Communication Engagement Lead) 

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This Sunday, 21 March, the globe commemorates World Down Syndrome Day (WDSD) as dubbed by the United Nations and celebrated annually since 2012. Very few people know that this day (the 21st of the third month) was specifically chosen to signify the uniqueness of the 'triplication' (trisomy) of the 21st chromosome in the human body which causes the condition, Down syndrome, according to Down Syndrome International (DSI).

Chromosomes R Us is a short film by actors with Down syndrome explaining how Trisomy 21 occurs – made by Shabang Inclusive Learning in collaboration with Mediapreview, Huddersfield, UK – and funded by BBC Children in Need.

DSI explains that the condition is a naturally occurring chromosomal arrangement that has always been a part of the human condition, being universally present across racial, gender or socio-economic lines in approximately 1 in 800 live births, although there is considerable variation world-wide. "Down syndrome usually causes varying degrees of intellectual and physical disability and associated medical issues," the organisation explains.

Down syndrome is only one of many disabilities that exist. Increased awareness about young and old persons with disabilities should be created, and this does not exclude their parents and caregivers. "Persons with disabilities depend greatly on the willingness and ability of their families to adopt unexpected informal caregiving roles," according to a chapter authored by Noreth Muller-Kluitsi and Ilze Slabberti, published in the latest edition of the Health Systems Trust's flagship publication, the South African Health Review

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The authors highlight the need for a holistic approach to care, foregrounding the significant role that the social workers also play in addressing the caregiver burden in families of persons with disabilities. "Parents usually have high aspirations and dreams for their children, but when they discover some anomalies in their new-born child, other emotional experiences can arise, such as guilt based on the belief that they caused the child's disability through genetics, alcohol misuse, or stress. When a person acquires a disability later in life, the adjustment must be made by both the individual and the family. This adjustment is ongoing, with feelings of sorrow alternating with despair and acceptance. Persons with an acquired disability alternate between acknowledging their 'pre-disability' and 'new disability' identity."

The study explores factors such as policies guiding service delivery to persons with disabilities in South Africa, social work and disability, and families as caregivers of persons with disabilities in the country. The authors make noteworthy recommendations which, if implemented successfully, will not only benefit persons with disability but also their caregivers, public health policy, issues of access to healthcare and overall human wellness. 

Our country is privileged to have Down Syndrome South Africa (DSSA). The organisation is committed to finding ways to improve the quality of life of all persons with Down syndrome and other intellectual disabilities, promoting the idea of inclusivity and that they have the right to live with independence, dignity and security as valued adults and full citizens in our society. It endeavours to empower families through dissemination of information, and encourages research in the fields of early intervention, education, medical aspects and employment. Its ongoing mission is to bring South Africa in line with world trends in the field of Down Syndrome and to see to it that the UN Convention on the Rights of People with Disabilities (UNRPD) is recognised and honoured in all spheres.

Down Syndrome International have produced this Easy Read fundraising guide: https://workdrive.zohoexternal.com/external/8CkAlci0dp8-Jxfap

 



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