1970 - No services for 'ineducable' children
In 1970, I went to work in a hospital as a psychologist and there I found Roberta
aged 9 months. She was living in a hospital for the ‘severely subnormal’ and UK
law stated that she was ‘unfit to benefit from education’.
At that time, there were no services for any child with Down syndrome or their families
so it was perhaps not surprising that Roberta’s parents had felt unable to look
after her and had left her in the hospital at 5 weeks of age. In 1971, the law changed
so that no child could be classed as ‘ineducable’ and special schools were started
– still for the ‘educationally subnormal’.
Roberta came to live in our family at the age of 16 months. I soon discovered how
isolated families with children with Down syndrome were.
1970s - Developing early intervention services
During the early 1970s, I became involved in developing early intervention services.
I quickly realised that we did not know enough about how having Down syndrome affected
development to be able to develop effective interventions. My research training
as a psychologist led me to search the scientific literature for information – I
found very little.
At this time, we were assuming that children with Down syndrome just learned in
the same way as other children but more slowly and that they were equally delayed
in all aspects of their development. Research over the past 30 years has now told
us that both these assumptions were wrong. Children with Down syndrome have a particular
profile of learning difficulties and relative strengths - not global delay.
1980s - Evaluating home-based intervention and studying early reading
abilities
In 1975, I joined the academic staff at the Psychology Department at the University
of Portsmouth. This gave me the chance to develop research as well as practice.
In 1979, just as we were thinking about how to plan some research to find out more
about the children’s needs I received a letter from Leslie Duffen. Leslie Duffen
was a teacher and the father of a young girl with Down syndrome. He wrote to me
about teaching his daughter Sarah to read from the age of 3 years. Our first research
study developed from Leslie's observations of early reading success.
From 1980 to 1983, we investigated the benefits of a home-based intervention programme
for 2-4 year olds and also their unexpected early reading abilities. We, and others
working in speech and language therapy, began to observe the children’s strengths
in non-verbal understanding and communication and in social relating, and their
relative difficulties in developing spoken language.
We observed surprising abilities in early reading from as young as 30 months of
age, at a time when the professional view was that no child with Down syndrome could
learn to read. We went on to show that most children can learn to read and that
this produces improvements in spoken language and memory.
We documented all this from 1983 in book chapters, papers and videos which had a
worldwide impact. For example, a parent from New Zealand wrote to me saying: “It
was a ‘life-changing’ experience to see videos of preschool children with Down syndrome
reading, and to realise that, although my daughter could not yet talk properly she
would very soon be able to start learning to read.”
1986 - Establishing the charity to promote research and dissemination
to inform practice
In 1986, with a local group of parents, we established the charity that is now The
Down Syndrome Educational Trust. This enabled us to fund the sharing of our research
findings with parents and practitioners – not just publish in academic journals
for other researchers. Since then the Trust has funded practitioners (psychologists,
speech and language therapists and teachers) as well as researchers.
We have always provided services as well as conducted research and this has been
a very successful strategy, enabling us to conduct longitudinal research studies
of progress and evaluate practical interventions. Very few research groups worldwide
are able to do this.
1990 to today - Research into many aspects of development, education
and social life
Through the 1980s and 1990s we continued to research underlying difficulties and
effective interventions in the areas of early intervention, speech, language, working
memory, sleep, reading, number, inclusive education and adolescence. The Trust has
funded research students to work in the area, most of whom are still focusing their
work on the needs of children with Down syndrome.
The Trust has also pioneered the development of successful inclusive education for
children with Down syndrome in mainstream schools since 1988 and demonstrated its
significant benefits.
The Trust has engaged in a very extensive programme of training and publishing with
staff travelling worldwide – but still educational opportunities are poor for many
children even in western countries.
We have learned a great deal from our own research and practice and from our links
with other research teams around the world. We have played a role in bringing researchers
together and moving research forward by hosting international conferences and publishing
the journal Down Syndrome Research and Practice since 1993.
In 2000, I left the University to work full-time for the Trust because the work
is so important and is changing lives.In 2004, I was awarded an OBE for services
to special needs education, recognising the major practical impact of the Trust’s
research.
Tomorrow's opportunities
We have learned a great deal in the last 30 years and we can plan more effective
early intervention and education programmes as a result. However, we are still only
at the beginning of really understanding the language, cognitive and social development
of children with Down syndrome in depth. We are also only at the beginning of really
understanding the genetics and the brain development of our children.
Great strides in the relevant sciences have been made in the last 10 years. I think
that we could now see an explosion of relevant research in the next 10 years if
we can make the funding available. This optimism is shared by many in the international
Down syndrome community. Many more scientists and practitioners are interested in
this field and in working together more effectively.
I believe that we could be on the edge of very considerable advances in our knowledge
that will deliver important improvements in services, support and progress for people
with Down syndrome. This is why I am asking you to support this Appeal.
The Sue Buckley Research Fund will be guided by a Science, Research and Intervention
Advisory Board that includes many of the leading international scientists and practitioners.
We are all committed to effecting change through the widespread dissemination of
evidence-based practice. Funds will be wisely spent to ensure maximum benefits for
people with Down syndrome everywhere.
Please do what you can to help us achieve all that is possible for today's generations
of people with Down syndrome - and tomorrow's.
Thank you,
Professor Sue Buckley OBE
The Sue Buckley Research Fund is managed by
The Down Syndrome Educational
Trust, a charity registered in England and Wales, number 1062823.
Copyright © 2007-2008 The Down Syndrome Educational Trust. All Rights Reserved.