People who have a down’s syndrome need above all to engage in with community as well as practice their life normally. Down’s syndrome Scotland (DSS) plays an important part in providing a multi- service which offers information, advice and support for those who have down’s syndrome and their families. What is Down’s syndrome Down syndrome Read More
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- Mar 22, 2021
- 5 min read
People who have a down’s syndrome need above all to engage in with community as well as practice their life normally. Down’s syndrome Scotland (DSS) plays an important part in providing a multi- service which offers information, advice and support for those who have down’s syndrome and their families.
What is Down’s syndrome
Down syndrome is a genetic disorder caused when abnormal cell division results in extra genetic material from chromosome 21( Down’s syndrome Scotland , 2017). This genetic disorder, which varies in severity, causes lifelong intellectual disability and developmental delays, and in some people it causes health problems.It is the most frequently recognised form of learning disability,Approximately one in every 1,000 babies worldwide is born with Down’s syndrome (Down’s syndrome Scotland , 2017). It occurs randomly at the point of conception and affects males and females alike. It is rarely hereditary and nothing the parents did before or during pregnancy can have caused it.
It is a lifelong condition and there is no cure; however, there are many ways to ensure that each individual with Down’s syndrome is given the right type and amount of support that they need to develop to their full potential ( Down’s syndrome Scotland,2017).
Down’s Syndrome Scotland (DSS) is a parent led charity which was established in 1982. It is the only charity in Scotland dedicated solely to supporting people with Down’s syndrome (Ds) and their carers( ). The strategic aim of (DSS) is to improve the quality of life and maximise the potential of every one with Down’s syndrome in Scotland( ). Therefore (DDS) strives to achieve this aim in the following ways :
-providing support and information to Parents and families of children and young adults with Down’s syndrome from a team of specialist staff.
-Provision of training course to help adults with Down’s syndrome and the provision of training courses to professionals and patients.
_ informing the public to raise public awareness and understanding of Down’s syndrome and to provide supporting information to parents and families.
-Working with other professionals in the fields of education, social work and health to secure better services.
Our group consists of six, second year students studying a variety of healthcare disciplines including Adult, Child and Mental Health Nursing as well as Physiotherapy. Upon choosing our community group, we researched which health conditions were primarily problematic for Scotland. According to (Summerfield,2009) the prognosis for an individual with Down’s syndrome has improved in recent years. There are fewer medical complications and specific educational programmes can improve the long- term independence with a person with Down’s syndrome. Despite these developments it remains the most common cause of several mental disability and with the decline in births with neural tube defects(Summerfield,2009). Furthermore, it has become the second most common serious congenital abnormality after heart disease in Scotland (Summerfield,2009).
Down’s Syndrome Scotland as a membership organisation, is underpinned
by the recognition of the right of individuals with Down’s syndrome to
have direct influence over the ongoing development of the Association.
It is essential that adults with Down’s syndrome are properly represented
within the Association and other areas, by ensuring that they are fully
and effectively involved in the decision-making processes.
Each member of Down’s Syndrome Scotland has input into the decision-making
processes, via the Executive Committee. Therefore, involving
adults with Down’s syndrome in the branch committee meetings will
allow their opinions and contributions to be made initially in the most
relevant and responsive environment. This will facilitate adults with
Down’s syndrome being formally included in the Association.
Involving adults with Down’s syndrome in branch meetings will ensure
that Down’s Syndrome Scotland is responding positively to the people
that it represents and working directly with people with Down’s
syndrome, not just on their behalf.
Looking back on the challenges and the responsibilities of working on the group WIKI I am able to reflect on my experience. At first the group struggled to communicate and work effectively together as each week not everyone was available to come to class and group meetings. This meant that there was no adequate form of communication and we were not always able to update each other on the work that we had done so far. We overcame this challenge by speaking to a member of staff and she was able to encourage us as a group to work in cohesion. Another challenge that I faced during my WIKI work was my time management. With external circumstances affecting my contribution I struggled to find time to access the WIKI. As I was behind in the work and was not able to make it to all of my classes. In the end I finally found the time to catch up with what I had missed and add my own input to the group WIKI.
“Downs Syndrome Scotland”. Downs Syndrome Scotland. N.p., 2017. Web. 6 Mar. 2017.
SUMMERFIELD, P., 2009. Prenatal screening for Down’s syndrome: balanced debate needed. The Lancet, 373(9665), pp. 722.