We are making good progress in improving education
for people who have Down syndrome.
The Sue Buckley Research Fund is raising vital additional funds for international scientific research to improve education for people who have Down syndrome and to ensure that up-to-date, evidence-based advice and information is widely available to all.
A good start
I am delighted to report that during the first year of the appeal, we have secured
£950,000 ($1.6 million/€1.2 million) of new funds for practical research and dissemination.
We are therefore making good progress towards our goal of securing additional annual
funding for research and education of £5.6 million ($9.5 million/€7 million) by
2012.
Our achievements to date include:
- Funding a longitudinal study of early development to explore factors influence
individual rates of progress in communication, speech, language, social
motor and cognitive development.
- Securing funding for one of the largest controlled trials of an educational
intervention for young people who have Down syndrome to date.
This trial will rigorously assess the impact of targeted reading and language
teaching approaches when implemented in practice in typical schools.
- Expanding our UK research team with the appointment of three new
researchers with excellent track records and expertise in speech and language, cognition
and education and teaching reading.
- Supporting new research in four Universities, including the University
of York, the University of Oxford and the University of Lancaster in the UK and
the University of Denver in the USA.
Significant progress
Within our first year, we are already making significant progress towards meeting
our specific priorities. We are now working to:
- Deliver effective home learning programmes - We have continued
to develop, and started to publish, our
See and Learn programmes. These will offer parents and practitioners
materials and activities to support language and literacy learning
from first words
to sentences. They provide a core set of materials which can be extended and personalised
for each child. The initial steps in the
See and Learn Language and Reading programme will be online by the
end of 2008. We will continue to develop See and Learn programmes throughout
2009.
- Improve memory skills - We are planning a memory training study
using computer based training with partners at the University of York to start in
2009.
- Provide free access to high quality information, guidance and teaching resources
- We have continued to develop Down Syndrome Online, publishing books, practical
guidance and original research papers. By mid-2009, all of our existing information
resources will be freely available online.
- Improve speech clarity - We have planned a two-centre study with
partners in Australia to investigate the effectiveness of parent-led speech and
language support for children who have Down syndrome. This study will deliver practical,
evidence-based guidance for families on how to support improved speech development.
Funding permitting, we will start this study in 2009.
- Understand the reasons for individual differences - We have begun
a comprehensive, longitudinal study of 40 toddlers to gather detailed information
on their development. We will be looking at the influences on their development
to explain the wide range of individual rates of progress that we see. We are also
addressing specific questions including – how does signing influence speaking, how
many children do show some autistic-like behaviours and how does early reading influence
language? We will be adding more children to this cohort as funding permits until
we have records on 100 children from infancy to starting school.
- Improve literacy skills – We now have two studies underway. A controlled
trial of individually targeted reading and language in 50 UK primary schools will
begin in York and Portsmouth in early 2009. In Denver, we are supporting a randomised
control study of 2 approaches to early reading support.
More to do
During 2009, we hope to continue making excellent progress with these priorities
and to start work on our remaining commitments to:
- Reduce the effects of hearing loss – With 80% of children experiencing
hearing loss this is an important priority.
- Reduce behaviour problems – A minority of children have longer
lasting behaviour difficulties which disrupt their education and create stress for
families – we want to look at preventative strategies to be incorporated into
early intervention programmes.
- Reduce sleep disturbance – Sleep disturbance starts early and we
need to know more about the causes and effective management as poor sleep effects
learning, daytime behaviour and increases family stress.
- Remove obstacles to successful inclusive education – We know that
good inclusive education brings many benefits for speech, language, academic progress
and social attitudes. However, more information for teachers and more research on
the most effective inclusive practices especially in secondary/high school years
is urgently needed.
- Improve maths outcomes – Most children with Down syndrome can read
much better than they can count and there is very little research into the reasons
why. We need to study the points at which understanding number become difficult
and to evaluate different approaches to teaching.
Practical, deliverable, life-improving outcomes
All of these priority initiatives will provide demonstrable benefits for young people
with Down syndrome.
Our objectives are achievable. We are building on the solid progress made by developmental
and educational research over the past few decades. In all our priority areas we
have some research findings on which to base our next questions. We are working
with international experts in all these fields to ensure we undertake well-planned
studies which focus on the critical issues which, once we understand them a little
more, will lead to effective interventions and changes in teaching practice quickly.
Your support makes all the difference
We have made excellent progress during the first year of our appeal. However, there
is much more to do. The funding secured this year is committed to projects. Further
progress will require further support. High quality research is costly, but
the benefits are lasting.
Today's and tomorrow's young people with Down syndrome will benefit from continued
investment in practical research that delivers improvements in the
early intervention and lifelong education.
There is a long way to go before all young people with Down syndrome are offered
the best opportunities. With continuing global economic difficulties, we need to
find all the support we can and we need your help.
To donate today:
If you can afford to give £60 ($100/€80) - just £5 ($8/€7) per month - then you
would help us to raise a further £1 million ($1.6 million/€1.4 million) annually.
This would help us to deliver better education for people with Down syndrome more
quickly. Please give whatever you can. Every contribution helps:
Thank you
I would like to thank the many families and individuals around the world who have
donated or fundraised for The Sue Buckley Research Fund during 2008. Your support
is invaluable and I hope you will be pleased with the remarkable progress that we
have made during the first year of the appeal and continue to support this work.
With kind regards,
Professor Sue Buckley OBE
Chief Scientist, Down Syndrome Education International
Vice-President, Science and Research, Down Syndrome Education USA