Congress celebrates success of people with Down syndrome

By Maree Kirk

The World Congress involved a great celebration of the lives and capabilities of children, youth and adults with Down syndrome in families, local communities and the international arena. The Congress celebrated the recognition of success, of the range of achievement for people with Down syndrome that involves both relationships with families and relationships to others as health professionals, educators, support workers or personal assistants, disability organisations and those providing work opportunities. The Congress evoked enormous respect for selfadvocates who addressed the Congress and a quest for understanding of the experiences, research and international practice presented throughout the four days of the Congress. The online information is now available and this is a valuable source of reference. The topics covered ranged from screening, neonatal challenges, early intervention approaches, emotional and behavioural reflections from parents, siblings' experiences, children with and without Down syndrome peer relationships, workplace advocacy and support models, adults and aging, health and fitness, adolescence and regression, dementia and a range of relationships topics and personal assistant relationships, and aspects of curriculum topic support. This was a broad and comprehensive coverage and I have selected a very brief number to highlight. The key speeches from the Health Symposium on Tuesday were around sleep apnoea presented by medical specialists such as Cathy Hill (http:// wdsc2018.org.uk/wp-content/uploads/2018/09/ Cathy-Hill.pdf) and Coeliac diagnosis presented by Peter Gillet (http://wdsc2018.org.uk/wp-content/ uploads/2018/09/Peter-Gillett.pdf). On Friday, Rachel Carr presented on Relationships and sexuality. The literacy presentations were focused on reading intervention, apps and communication tools I would suggest. For example on Wednesday Prof Sue Buckley, and Talking Mats (available in New Zealand); or on Thursday, Colin Dean and Julie Brown, Christopher Lemons. The maths and numeracy advances were particularly encouraging and a lot of research and data was presented in these sessions with a new app developed in Germany based on cognitive ability for students with Down syndrome. Please check out the three Friday sessions by Elisabetta Monari Martinez; José Ignacio Cogolludo Agustín, S. Lanfranchi among others. Down Syndrome International (DSI) is working to develop International Guidelines for People with Down Syndrome based on Article 24 of the UN Convention for Rights of People with Disabilties, 2006. Through these guidelines DSI aims to assist member countries to meet obligations under UNCRPD and to provide guidance to countries developing their own standards for the provision of evidence informed, best practice education for learners with Down syndrome. I will be following this up for New Zealand with Bridget Sneddon who we are lucky to have as our long-serving New Zealand representative on DSI and this will coincide with New Zealand’s Education Review. For further information on the speakers or their presentations go to the World Congress website: wdsc2018.org.uk/speakers/ or feel free to contact me on bopdsaproject@gmail.com