Representatives from Down Syndrome Education International recently joined colleagues from the UK Down's Syndrome Association to welcome Members of the House of Commons and the House of Lords to the first meeting of a new All Party Parliamentary Group on Down's Syndrome. This new cross-party group will work to inform MPs and Lords about many of the issues facing people with Down syndrome and their families across the United Kingdom and consider ways in which policy changes can improve their quality of life.
"We were delighted to support this inaugural meeting of the new All Party Parliamentary Group on Down's Syndrome," commented Frank Buckley, Chief Executive of Down Syndrome Education International, "Public policy affects so many aspects of life for people with Down syndrome, yet their particular needs are often not heard clearly enough in policy circles. We are committed to working closely with the Down's Syndrome Association, other organisations and the members of the group from all political parties to ensure that the highest standards of developmental and educational support are provided to all young people with Down syndrome across the UK."
Among its first actions, the All Party Parliamentary Group on Down's Syndrome is seeking to improve the quality of information provided to expectant parents throughout the prenatal screening process.
"I am delighted that the Virendra Sharma MP has kindly agreed to put together and Chair an APPG on Down's syndrome. It is vital that we all work together to raise, with central government, some of the major issues that affect the lives of people with Down's syndrome," said Carol Boys, Chief Executive of the UK Down's Syndrome Association (DSA). "The APPG on Learning Disability has been a tremendous success and the DSA is still very much a part of that; however, there are some really important issues that only affect people with Down's syndrome and their families. This is why we have chosen to start a separate Group. I would very much like to thank DSA parent member, Tony Greaves for all the work that he has done to make this APPG happen." The group is also seeking to establish two national working groups. The first will identify national best practice standards in healthcare, early intervention, education, adult social support and employment and work to ensure that they are put into practice across the country.
"There is much still to learn about how Down syndrome affects development and the implications of this for effective teaching, but what we already know can have a dramatic impact on levels of achievement for young people with Down syndrome today" commented Professor Sue Buckley OBE, Down Syndrome Education International's Chief Scientist. "However, many children do not benefit from up-to-date, evidence-based approaches to early intervention and teaching. There are many reasons for this, but knowledge-based guidance and best practice standards will a long way towards improving the quality of current services."
The second working group will formulate a cohesive strategy for public research funding, encompassing cross-disciplinary approaches to research that put the needs of people with Down syndrome at the heart of the research agenda. The All Party Parliamentary Group on Down's Syndrome will also seek improved funding allocations for Down syndrome research, more fairly comparable to those allocated to other conditions. "Many of the things that have improved quality of life for people with Down syndrome over the past few decades have resulted from medical, developmental and educational research. Yet research aimed at helping people with Down syndrome is grossly underfunded" commented Frank Buckley. "Today, UK public funding for Down syndrome research is less than £400,000 each year – barely £10 for each person living with the condition in the UK. Although still inadequate, US public funding for Down syndrome research is four times this. Both compared to the research investments for other conditions, and compared to the vast expenditure invested in developing and operating genetic screening programmes, the level of public funding dedicated to improving the lives of the growing numbers of people living with Down syndrome is a disgrace."
A further initial goal of the All Party Parliamentary Group on Down's Syndrome will be to ensure that people with Down syndrome are recognised by government departments as not only having many needs in common with other disabled and non-disabled people, but as also having distinct needs that are associated with having Down syndrome. The group will seek to ensure that these distinct needs are considered in government planning for health, education and social services.
The formation of the group was initiated by Tony Greaves, the father of a young child with Down syndrome, who said "I am delighted to see the All Party Parliamentary Group for Down syndrome up and running. I am sure that it will prove to be an effective forum to drive a policy agenda that improves the lives of people with Down syndrome."
The All Party Parliamentary Group on Down's Syndrome will meet again in the autumn.
DownsED, 27th August 2009
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