A nice article (PDF) by Beverley Dean, founder of Special iApps, in Down’s Syndrome Scotland‘s magazine about the development of apps designed for children with Down syndrome.
Special iApps develops educational apps, including apps featuring and complementing DSE’s See and Learn Language and Reading program.
Last week, the All Party Parliamentary Group on Down Syndrome (APPGDS) presented a new report on good practice in education to Edward Timpson MP, Parliamentary Under Secretary of State (Children and Families) who is responsible for special educational needs and disability at the Department for Education.
The report summarises information about the specific learning needs of children with Down syndrome, sets out principles for effective education practice, and calls on government to:
You can watch the Minister’s reply here and download the report here (PDF, 1.2MB).
The latest Annual Report from the National Down Syndrome Cytogenetic Register (NDSCR) has been published. NDSCR collects data on babies diagnosed with Down syndrome throughout England and Wales. The Annual Report provides updated data for 1998 through to 2011, though the 2011 numbers remain provisional.
In the five years from 2006 to 2010, an average of 741 babies were born with Down syndrome each year in England and Wales. Extrapolating on the basis of population, we can estimate that an average of 836 babies were born with Down syndrome each year from 2006 to 2010 in the United Kingdom. There were 16% more babies born during this period than the previous five years (2001-2005) and 19% more than in the five years prior to that (1996-2000). In other words, there are around 19% more babies being born in England and Wales than 10 years ago.
Of course, some of this increase is due to an increase in births in general. In the five years from 2006 to 2010, the live birth prevalence of Down syndrome in England and Wales averaged 10.6 per 10,000 (1 in 944 babies). Live birth prevalence was during this period was 3% higher than in the previous five years (2001-2005: 10.3 per 10,000) and 8% higher than in the period prior to that (1996-2000: 9.8 per 10,000). In other words, the live birth rate in England and Wales is 8% higher than 10 years ago.
The recent increases in live births and live birth prevalence (babies born with Down syndrome as a proportion of all babies born) seem to have peaked in 2009 with 774 births in England and Wales (1.1 per 1,000 or 1 in 912 live births) and fallen to around 725 annual births (1.0 per 1,000) in 2010/11.
There seems to be a slight trend towards fewer terminations being chosen after a prenatal diagnosis – from around 92% in the late 1990s to around 90.5% in recent years. Note that this is the proportion of babies prenatally diagnosed with Down syndrome that were terminated – not the proportion of all babies with Down syndrome.
Babies with Down syndrome (and other trisomies) are substantially more likely to be lost during pregnancy than other babies. Therefore, the number of terminations recorded does not tell us how many babies were not born that would have been born in the absence of genetic screening and selective terminations. This is because many of the babies terminated would not have survived to term in the absence of intervention.
In 2010, there were 1,111 terminations recorded. We can estimate (from the ages at which mothers gave birth in that year) that 1,613 babies would be expected to be born with Down syndrome. Therefore, 888 (55%) fewer babies with Down syndrome were born in 2010 than would have been born in the absence of genetic screening and selective terminations.
Given recent trends in births, we can estimate that there are approximately 37,000 people with Down syndrome living in the United Kingdom today.
A great programme from the BBC about three young people with Down syndrome:
Ruben, Harley and Nicole are three very different 12-year-olds, with one very big thing in common. They all have a dream and they won’t let anything stand in the way of it – especially something as unimportant as having Down’s Syndrome. Having been wrapped up in cotton wool by their parents since they were born, we follow these three extraordinary children over the summer that will change their lives.
Watch here (may not be available in all countries): http://dsuri.net/YIjfu5
We are seeking additional Trustees and Directors to help lead our work improving education for children with Down syndrome. If you may be interested, please get in touch and consider coming along to a briefing in London on 26 February 2013.
There are an estimated 13,000 children (under the age of 18) with Down syndrome in the United Kingdom, 83,000 in the United States, 8,000 in Canada, 7,000 in Australia, 145,000 across Europe and (perhaps) 1.6 million worldwide. Almost all should (and could) be receiving more effective early intervention, speech therapy and education than they do – helping them to lead more independent, productive and fulfilling adult lives. Improving outcomes for all of these children is what DSE exists to do.
Down Syndrome Education International is a unique charity with a successful 25-year track record. We focus on improving education for children with Down syndrome through research, services and resources supporting families and educators worldwide.
The charity is widely regarded as a world leader in its field. Over three decades, we have advanced understanding of the children’s learning needs, investigating early language development, reading and literacy, memory, number skills, behaviour, inclusion and more. We work closely with colleagues at Universities around the UK and around the world.
Our current research interests include early language development, early cognition and problem-solving, attention and executive function, working and short term memory, speech clarity, reading instruction, reading comprehension, numeracy and social development and behaviour. In several of these research areas, we have practical candidate interventions ready for evaluation that we believe stand a good chance of being shown to be effective at improving critical educational outcomes for children with Down syndrome. With the necessary funding in place, each of these trials could deliver results within 18 to 36 months and (if successful) then immediately start to transform speech therapy, early intervention and teaching practice for children with Down syndrome.
Our books, teaching materials, films and web sites help over 150,000 people in over 170 countries worldwide annually. We are actively developing our See and Learn early teaching materials to help families, teachers and therapists to support language and reading, memory, speech and number skills development during the important early years. We have recently published a new, evidence-based primary school reading and language intervention – the direct result of a major research project and the first rigorously evaluated intervention designed for children with Down syndrome.
We also present web seminars, workshops and conferences to audiences around the UK and around the world. We are regularly invited to speak at major conferences, and in recent years have hosted education conferences in the UK, the US and Ireland.
Changing times
Down Syndrome Education International has been changing over the past 5 years to do more to meet the needs of families and children throughout the world.
In 2007, we began to focus more of our attention towards research. For several years prior to this, our research activities had slowed while we expanded our publishing, training and consulting activities. In 2008, we secured a major grant from the Big Lottery Fund to evaluate a reading and language intervention (that we are now publishing). Also in 2008, we established Down Syndrome Education USA to develop services and activities to support families and children with Down syndrome in North America, and to further develop research activities in the US.
Since late 2008, we have had to adapt to the new economic realities, which in the UK have included greater competition for charitable funding from trusts and foundations, and reduced funding from corporations and government. Local government cutbacks in the UK following the 2010 Spending Review (in part) led to the closure of local support services for families and schools in southern England in 2011.
Over the past few years, we have grown our income (figure, right) – in part by growing revenues from social enterprise activities. Many of the resources and services that we supply can only be provided by charging for them. With some sources of charitable income on the decline, we are increasingly having to rely on these revenues to not only cover the costs of the services, but also to contribute to future research.
During the past year, we have restructured our UK operations, moving to smaller offices in the north of England and outsourced much of what we used to do in-house. We are increasingly funding researchers in Universities rather than employing permanent researchers ourselves. We are also shifting our focus to training professionals working for other charitable and public sector organisations, rather than being a ‘frontline’ training provider. These changes are not only improving efficiency, but also increasing the impact that we have on the education of thousands of young people with Down syndrome.
Seeking new Trustees and Directors
With these strategic shifts in mind, we are now seeking to expand both the Board of Trustees of Down Syndrome Education International (DSEI) and the Board of Directors of its subsidiary social enterprise company, Down Syndrome Education Enterprises CIC (DSEE). DSEI is a UK-registered charitable company through which we operate our UK and international research activities and charitable services. DSEE is a UK-registered community interest company that is wholly owned by DSEI and through which we operate publishing, training and consulting services. Both DSEI and DSEE work in a close strategic partnership with Down Syndrome Education USA – our associated US nonprofit through which we operate publishing, training and consulting services in North America.
We are seeking volunteers who wish to serve on either one of these Boards and help us do more to improve education for children with Down syndrome everywhere. We are interested in recruiting parents, education professionals and researchers with relevant experience and expertise. In addition to educational and research expertise, we are seeking volunteers with experience in accounting and finance, sales and marketing, publishing and distribution, and general business management. We also expect all our Trustees to assist with fundraising in any ways they can.
Both Boards meet three times each year in London, in between which we communicate regularly by email and occasional teleconference.
Trustees of DSEI are responsible for setting research priorities, fundraising and charitable services. Directors of DSEE are responsible for developing and operating effective support services and publications that help improve outcomes for children with Down syndrome. Clearly, the two Boards work closely together and there is some dual representation.
Members of both Boards serve as company directors (DSEI is a limited company as well as being a charity). Members of the DSEI Board also serve as charity Trustees. Further information about the role of charity Trustees is available in the Charity Commission’s publication The Essential Trustee: what you need to know (PDF).
We do not remunerate DSEI Trustees or DSEE Directors. However, we can cover out-of-pocket expenses.
London briefing event, 26 February 2013
If you are interested in helping us continue to improve education for children with Down syndrome, we invite you to get in touch.
We are holding a meeting on 26 February 2013 in London to provide information to anyone interested in becoming a Trustee or Director and to give you an opportunity to meet staff and existing members of the boards.
The briefing will be held at 11:00 in central London and followed by a sandwich lunch at 12:30.
Further information
If you would like to attend the briefing or if you would like further information, please contact me at frank@dseinternational.org
Our new reading and language intervention will be shipping in a few weeks and we are now accepting pre-publication orders for the teacher’s handbook.
DSE’s Reading and Language Intervention for Children with Down Syndrome (RLI) teaches language and literacy skills following evidence-based principles adapted to meet the specific learning needs of children with Down syndrome aged 5 to 11 years.
RLI was evaluated in a randomised controlled trial in the UK. The study was funded by the UK Big Lottery Fund and conducted by researchers at Down Syndrome Education International and at The Centre for Reading and Language at the University of York. RLI builds on earlier work on reading and language interventions at the University of York, adapting teaching techniques to meet the learning profile of children with Down syndrome. The primary findings of the trial were reported in a paper published in the Journal of Child Psychology and Psychiatry.
Further information online
In addition to the scientific paper, we have published detailed information about the study, our findings and our recommendations online.
Pre-publication orders
We are accepting pre-publication orders in the UK and will begin accepting orders in the US shortly (as soon as we are confident about the timing of getting stock to the California office).
RLI email list
We have launched an email discussion list for parents and educators using RLI or interested in learning more about it.
To subscribe to the DS-RLI discussion list, please complete this online form or email listserv@listserv.down-syndrome.net with “subscribe DS-RLI” in the body of the message (without quotation marks).
Online information events
We also are hosting a series of online information events explaining what RLI is, what it offers, who it may be suitable for and how it was evaluated. To find out more about the events and available dates and times, and to book, please visit the event page.
Sir Christopher Ball and his wife Wendy are making tremendous progress walking from the south coast of England to the North, raising funds for the charity along the way.
Sir Christopher Ball, the Chairman of the Board of Trustees, and his wife Wendy are walking from the south coast of England to the North, in aid of Down Syndrome Education International. They are follow a route alongside water – rivers and canals from Littlehampton on the Sussex coast to Carlisle, close to the border with Scotland.
Follow them – and Christopher’s poetry – as they wind their way north on their Walking by Water blog.
To show your support for their efforts, please donate via their JustGiving page.
