By Professor Sue Buckley OBE
Professor Buckley gives us her personal take on the DS Bill in this statement shared with permission. We are grateful for her support and expertise as we move forward.”
I think setting up an APPGDS in the UK Parliament is a constructive move which can be used to inform MPs and civil servants about the needs of people with Down syndrome. I was actively involved in earlier one which led to APPGDS Education Guidelines in 2012, widely welcomed and used in schools.
I have always been keen to promote evidence-based guidelines as we have so much research which continues to highlight how having Down syndrome affects development, health, learning and ageing. Yes, individuals have many needs similar to others with intellectual disability, but they have many specific needs, which if addressed, make a significant difference to reaching their potential and to the lives of their families. This information needs to get from research to practice. I believe we can use the Bill to promote such guidelines based on facts, not opinions, and influence professional practice. I think we can use the APPGDS and the Bill to leverage better services and to argue for funding – we may have an uphill journey but doors to MPs and government departments have been opened by the work done by NDSPG so far.
The Chair of our earlier APPGDS Virendra Sharma is a Vice Chair on the new one and he was effective when we worked with him, so I am pleased to see he has returned. I can offer expertise in some areas not all though I may have experience to offer on others as a parent. I may not agree with some priorities which could come forward and will say so. I have known most of those working on NDSPG since their babies were born and they will tell you that I have had fierce rows with them on some issues but I am but happy to work constructively with them on others.
I am not entering into any debate and will not reply to comments – this is the statement I promised a few days ago and is my personal view. Go to National Down Syndrome Policy (ndspg.org) for more information.
Sue is Director of Science and Research, Down Syndrome Education International, Director of Science and Research, Down Syndrome Education USA, Emeritus Professor of Developmental Disability, University of Portsmouth, UK
The above reflects Sue’s personal views and are not those of Down Syndrome Education International.
For more information on Sue’s publications: