Thursday, 29 October 2015

12th World Down Syndrome Congress, Chennai 2015

Up! Club members Rohan Fullwood and Tara Elliffe spoke about there experience at the 12th World Down Syndrome Congress in Chennai, India in August at our AGM on 18th October. Their presentation is on our website, here. Be sure to click on the link to see their wonderful photos. Down Syndrome NSW Executive Director, Tracylee Arestides also attended the 12th WDSC and reports back:



Every three years Down Syndrome International (DSi), a London based charity, organizes the World Down Syndrome Congress. August 2015 saw 500 delegates from over 25 countries come together in Chennai, the capital of Tamil Nadu in southern India, to share information, make connections and work toward making ‘An inclusive tomorrow’.

Of those gathered in Chennai just over 100 delegates were people with Down syndrome. One of the great things about this was that every time you looked around the room about every 4th or 5th person had Down syndrome! Australia had its fair share of delegates with DS including dancers and drummers from Victorian group eMotion 21 and rock’n’rollers Club Slick from South Australia. Many individuals travelled to India as well, including several members of DS NSW.

The Congress took place over three action packed days and covered a wide variety of subjects ranging from weight management to independent living to the paranormal abilities of people with DS!

An important part of each Congress is the parallel stream of presentations and activities that is exclusively for people with DS. At the end of the 2015 Congress, the self advocates session of this stream agreed on the following resolutions
  • To be respected and accepted so that disabled citizens are treated equally 
  • To have the right to date and get married like everyone else, without parental interference 
  • To have the opportunity for self-care and a healthy life, living independently including pay bills and make own decisions. 
  • Education be made free for all 
  • To be provided with a trained counsellor in all schools and colleges with inclusive practices without comparison to other people without Down syndrome 
  • Insurance policy coverage from birth 
  • The right to vote 
  • Right to transportation 
  • Develop a clear social model of service provision relating to the health, education. Training and employment and career development of persons with Down syndrome and intellectual disabilities ensuring that those involved in its implementation are adequately trained. 
  • Allocate resources to develop and sustain innovative approaches to training and employment related to programmes and services for persons with Down syndrome. 
  • Make reasonable accommodations, provide employer incentives, Encourage networking and collaboration in particular on supported employment 
  • Take strong measures to prevent sexual and physical abuse or exploitation and provide equitable justice where criminal activity has occurred. 
  • Provide access to general healthcare services which respect the dignity and privacy of individuals with Down syndrome and intellectual disabilities and which facilitates informed decision making. 
  • Sport and recreation policies of governments should facilitate sponsorships, accessibility, education training and participation at all levels. 
Many of the issues addressed in Chennai spoke directly to the experience of people with DS and their families in the Asian region. While it is interesting to see how far we may have come respecting the rights of people with DS in Australia it was also a reminder that those rights can not be taken for granted.

One of the most insightful and entertaining speakers at the Congress was American geneticist, and younger brother of Kristen who has DS, Dr Brian Skotko. Dr Skotko presented findings of some recent research he has undertaken about people with DS and their families. Among other things the research showed that 61% of siblings between the ages of 9 and 11 worry about their sibling with DS being made fun of while 89% felt that their friends were quite comfortable with their sibling and only 7% were embarrassed by having a sibling with Down syndrome.

Dr Skotko’s recommendations for parents arising from the research included
  • Allow brothers and sisters to express negative feelings 
  • Be open and honest and explain DS as early as possible 
  • Recognize the difficult moments that brothers and sisters may be experiencing 
  • Limit caregiving responsibilities 
  • Recognize the individuality and uniqueness of each child in the family 
  • Be fair
(Dr Skotko’s recent book Fasten Your Seatbelts – A crash course on Down syndrome for brothers and sisters is available from the library).

Overall the WDSC 2015 was a highly informative, very full and a joyous occasion.

Presentations from the 12th WDSCongress can be viewed here.


The next WDSC is in Glasgow, Scotland, 24th - 27th July 2018 
and its highly recommended - so start saving and planning!

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