Reading and language intervention web seminar

Posted on by Frank Buckley

Join us online this week to learn more about the reading and language intervention study that has recently been published. DSE researchers Dr Kelly Burgoyne and Professor Sue Buckley will be presenting and responding to questions.

Together with colleagues at the Centre for Reading and Language at the University of York, we have recently completed the first large controlled trial of an intervention designed for children with Down syndrome. The first scientific paper from the study is now available. This three year study involved nearly 60 children in schools in York and Portsmouth in the United Kingdom. It was funded by the UK Big Lottery Fund.

Join us online to learn more about the trial and the intervention itself. At these free events, DSE researchers will explain the trail and the design of the intervention, and present their findings. There will also be opportunities to ask us questions.

  • 15 May 2012 – 19:00 British Summer Time (11.00am Los Angeles, 2.00pm New York, 16:00 GMT, 20:00 Paris) – Register now…
  • 16 May 2012 – 09:30 British Summer Time (08:30 GMT, 10:30 Paris, 12:30 Moscow, 14:00 New Delhi, 18:30 Sydney, 20:30 Auckland) – Register now…

A week in Washington

Posted on by Frank Buckley

An interesting week in Washington DC: first the National Down Syndrome Society’s Buddy Walk on Capitol Hill, followed by the Down Syndrome Affiliates in Action conference, then the Gatlinburg conference being held up the road in Annapolis.

It has been an interesting week in Washington DC. Last Thursday, was the National Down Syndrome Society’s Buddy Walk on Washington – a one day event during which people with Down syndrome and their families engage in a coordinated effort to influence their Representatives and Senators on Capitol Hill. This was followed this year by the annual Down Syndrome Affiliates in Action Conference, bringing together staff, board members and volunteers from Down syndrome organizations across the US.

DSE staff were out and about. Dr Kelly Burgoyne and I joined the NDSS Buddy Walk on Washington to attend an interesting briefing on education – in particular, alternative assessments and universal design for learning.

Kelly and I then presented at the AIA conference. This is always an enjoyable and interesting event where many people – all working to improve life for people with Down syndrome – come together to share their experience and examples of successful practice.

Classroom reading and language intervention

Kelly presented the new elementary classroom reading and language program that we have recently completed a three year trial of. We found that the children who first received the program were significantly ahead on key reading and language measures after 20 weeks of intervention (compared to a fully included matched control group who waited before receiving the program). Some of the gains were striking: for example, those in the initial intervention group acquired more than double the number of new words (from a standardized vocabulary set) than their matched controls. We also found that the waiting control group showed similar rates of progress when they received the intervention after the first control period.

This was the first large scale randomized controlled trial of an intervention designed to target the learning profile associated with Down syndrome in a structured way. As such it stands as evidence that condition-targeted early intervention and education practices can result in marked improvements in learning and cognition, and therefore should be widely adopted by educators. This is scientific research making a difference today: we should be doing many more of these trials.

The study paper will be published shortly (we are at the mercy of the journal editors). We will publish the program handbook in June. We will be supporting the rollout of the program in the UK with a series of events and new training services. We are already starting to adapt the program for use in US schools and will be submitting a federal funding application to run a US trial of the adapted program (earliest start would be spring 2013).

See and Learn

I presented on our See and Learn programs – designed to support early learning and development for young children with Down syndrome.

We now have four steps in our See and Learn Language and Reading program and two steps in our See and Learn Speech program. Two more language and reading steps, four more speech steps, three number skills and some memory steps are all now in the pipeline for publication this year.

We have also just started on See and Learn app development and expect to be releasing our first See and Learn apps later in the year. We are overhauling the See and Learn web site to improve usability and bring the new steps online in the next few months.

See and Learn kits can be purchased from our UK and US stores.

Research advances

I also presented on developmental and educational research in general – and our current studies in particular. This is an area of research that has made – and continues to make – a tremendous contribution to the advances in support for people with Down syndrome today.

In addition to the large classroom reading and language intervention trial, we have recently completed a randomized controlled trial of a memory training computer program, and completed work on early reading and phonics instruction, early indications of autism, improving blending skills, and morphological awareness. We are also supporting other researchers studying sleep, early attention, speech and language, and reading comprehension interventions.

We have several important studies planned for which we are seeking funding, including evaluations of interventions targeting speech clarity, early problem solving, reading comprehension teaching, and early language development.

Gatlinburg conference

Following AIA, Professor Sue Buckley and Dr Kelly Burgoyne are attending the 45th Annual Gatlinburg Conference where they are presenting on the classroom reading and language intervention trial and our recent work on improving blending skills, early reading and phonics instruction, and early indications of autism.

Handouts

Slides from our talks at AIA are available for download:

Web events

Keep an eye out for announcements of online events were we will be presenting on many of these topics in the next few months. Please sign up for our emails to stay informed.

 

Births in England and Wales

Posted on by Frank Buckley

Although NHS policy has widened availability and sought to improve the accuracy of prenatal screening services, live birth prevalence continues to rise.

In April 2001, Yvette Cooper (then Minister of Health) announced that all women (of all ages) should be offered screening for Down syndrome in England. This was subsequently followed by a series of policies and plans designed to increase the availability and improve the accuracy of screening services.

So what has been the result of policies with over 700,000 women now routinely offered prenatal screening in England and Wales each year?

Helpfully, there is a national register (at least covering England and Wales) tracking the outcomes of pregnancies diagnosed with Down syndrome. The latest annual report (PDF) was recently published, giving us non-provisional data through to 2009.

Live birth prevalence in England and Wales in the first half of the decade (2000-2004) averaged 10.0 per 10,000 live births. In the second half of the decade (2005-2009) prevalence rose to 10.9 per 10,000 live births – an increase of 9%. Over the same periods, average annual births rose 12%. Overall, therefore, live births in England and Wales in the first half of the decade (2000-2004) averaged 609. In the second half of the decade (2005-2009) they rose to 745 – an increase of 22%.

One year on in Kyiv

Posted on by Frank Buckley

The Ukrainian Down Syndrome Organisation celebrates the opening of the early intervention and parent support centre in Kyiv on year ago. In just one year, over 340 families have visited for direct support and over 1,000 parents and educators around the country have benefited from better information and advice.

Until recently, almost all babies with Down syndrome born in Ukraine have been given up by their families for care in institutions where they have received few opportunities to achieve their potential to live fulfilling lives. Today, many families are choosing to look after their children with Down syndrome. However, little support is available to these families. Medical care is often inadequate, leading to unnecessary illness or impairment. There are very few opportunities for children with Down syndrome to receive effective therapy and education to help their development.

In 2010, the Ukrainian Down Syndrome Organisation began a major three-year project in partnership with Down Syndrome Education International to improve support for people with Down syndrome throughout Ukraine. The project is a corporate social responsibility initiative of EDB ErgoGroup – a leading Nordic IT company.

Since starting the project in July 2010, the Ukrainian Down Syndrome Organisation has opened a centre in Kyiv, employing specialist staff, and translated and published up-to-date information about health and medical care, early intervention and education for people with Down syndrome.

This week, the charity celebrated the anniversary of the opening of the centre – an event picked up in some of the local media:

Upcoming workshops at The Sarah Duffen Centre

Posted on by Frank Buckley

We have series of workshops coming up at The Sarah Duffen Centre in Portsmouth. Presented by Professor Sue Buckley OBE, these cover effective support for development and learning in the early years, primary school years and a workshop focused on speech and language.

DSE will be running three workshops this autumn at The Sarah Duffen Centre in southern England:

Places are limited. Book online soon to avoid disappointment.

We will be announcing a spring 2012 workshops schedule later in the year. Please keep an eye on our news feed and sign up for emails for updates.

Recent changes at Down Syndrome Education International

Posted on by Frank Buckley

The last few months have seen some changes at Down Syndrome Education International – some planned and some unexpected, with some services closed and others scaled back. Meanwhile, we continue to make excellent progress with new research and new publications. I want to set out the background to this restructuring, what it means for current services and activities, and for our future strategy. Despite (and partly because of) these changes, we are today better placed to deliver widespread improvements in education for children with Down syndrome than ever before.

The current economic environment is undeniably challenging. Market turmoil since 2008 has left many foundations cutting their grant budgets. Many western governments are starting to constrain public expenditure – something that is set to continue and become more severe. Many charities in the UK that built their financial models around government contracts for service delivery are facing massive drops in income. As everyone looks for new sources of funding, non-governmental grant-giving organisations are experiencing a surge in applications.

It would be surprising if we were immune to these events and circumstances. Even though our direct exposure to government funding is limited, we have been affected by government spending cuts. Meanwhile, rising living costs and constrained wage rises in our core donor countries are depressing private giving and income from voluntary events.

Loss of funding for services in southern England and planned restructuring

Earlier this year we learned that our contract for schools support in Portsmouth was being cancelled due to government cuts and we failed to secure a substantial grant for local early years development groups. Regrettably, this necessitated a staff redundancy in our services team and the restructuring of the preschool groups.

The success of our new See and Learn programs has outgrown the capacity of our in-house production workshop.

At the same time, we were also restructuring the publishing activities operated by Down Syndrome Education International’s subsidiary social enterprise – Down Syndrome Education Enterprises CIC. The success of our new See and Learn programmes, coupled with the rapid growth in our work through Down Syndrome Education USA in the past couple of years, means the work has outgrown our in-house production workshop. We have operated a printing and assembly workshop since 2001, employing several adults with Down syndrome. However, the logistics and economics of larger print-runs, more teaching materials (rather than only books) and increasing volumes required in North America, had made this method of production no longer feasible. We therefore took the decision to outsource production closer to where it is required (i.e. UK editions in the UK, US editions in the US).

Unplanned service closures

The combination of planned restructuring and redundancies in quick succession earlier this year was undoubtedly unsettling for staff, and for many of our clients and supporters close to our centre in southern England. Shortly after these changes, two members of our services team unexpectedly decided to resign. This left us unable to offer local early education services from September and unable to operate two conferences planned in the UK this autumn.

The impact of this has been most keenly felt in southern England where regular support for children in schools in our hometown of Portsmouth has also now ended. However, the knock-on effects of a smaller staff team are also being felt further afield where conferences have been cancelled and some training and consulting services scaled back.

I am very disappointed and sorry to have let down families wishing to use these services and particularly to have had to do so at short notice. We have never accumulated reserves to fall back on, giving us little choice but to act swiftly and leaving no option to recruit and train new services staff.

Ongoing activities and services

Despite planned and unplanned service reductions, we continue to undertake a wide range of activities. These include major research projects, publishing activities, and training and consulting services. Our work continues to help many thousands of people worldwide each year.

Our core purpose

We believe that good education is critical for sustained improvements in quality of life.

Down Syndrome Education International grew from a research project begun in Portsmouth, England at the end of the 1970s. For three decades, DSE has contributed to a vastly improved understanding of the cognitive, developmental and learning difficulties of young people with Down syndrome. Along with the work of many other scientists, our research has helped bring about a transformation in the quality of early intervention and educational instruction offered to many tens of thousands of young people in many countries.

Our end goal has always been quality of life improvements for people with Down syndrome. We believe that good education is critical for sustained improvements in quality of life. Effective early intervention, therapies and teaching practices can improve speech, language, literacy, numeracy and broader academic achievement. In turn, better educational outcomes improve social opportunities and employment prospects.

Ever since our first studies, we have helped families and professionals utilise the latest knowledge arising from research. We have published books and articles since the mid-1980s and established our first web site in 1996. Today, our publications reach over 100,000 people in over 180 countries annually. We have also provided training, consulting and education services worldwide for many years, helping to bring information and advice closer to many thousands of people. Last year, we began our first major outreach project to bring modern, evidence-based care and support for people with Down syndrome to Ukraine, working in partnership with the Ukrainian Down Syndrome Organisation.

The lasting value of scientific research

It is worth reflecting on the fact that the impact of research undertaken 30 years ago continues to be felt around the world.

It is worth reflecting on the fact that the impact of research undertaken 30 years ago continues to be felt around the world. Research often seems remote from the everyday challenges facing teachers, therapists and families. Timelines are prolonged: a large intervention study can take three or more years to deliver change in practice (if it is successful). Research is expensive – a large multiyear study can cost over $2 million (£1.2 million or €1 million). Yet, when we seek advice about what is most effective it is research that we turn to. Yesterday’s research guides today’s practice.

If we are to further improve outcomes tomorrow, we must undertake research today. As families, professionals and policymakers seek to deliver not just better outcomes but also better value from early intervention and education, we need better research to inform not only best practice but also the most effective allocation of increasingly scarce resources. Publicly funded services will be increasingly under pressure to demonstrate effectiveness and the results returned on taxpayers’ investments. High quality research – particularly controlled trials of identified interventions – will be essential to make this case convincingly.

Future plans and strategy

We continue to put scientific research at the heart of what we do – this is what drives long-term and widespread impact.

We continue to put scientific research at the heart of what we do – this is what drives long-term and widespread impact. We will continue to focus on developing and evaluating practical developmental and educational approaches and therapies suitable for widespread adoption. Recent advances in understanding of some of the neurological features of Down syndrome may lead to treatments that can enhance learning for children with Down syndrome. However, it is far from clear if potential drugs will prove effective and safe in humans and, even if some do, it will be at least five to ten years before anything is likely to be approved for use with children. Regardless, developmental and educational research remains critical for improving outcomes. No drug is likely to normalise learning and all aspects of neurological function in children with Down syndrome. More likely will be the identification of substances that make it easier to learn some things – for example, requiring less repetition to achieve memory consolidation. Effective teaching techniques will remain essential, and we still know far too little about what the most effective approaches and therapies are.

We will also continue to publish information widely, with an increasing emphasis on practical resources and packaged programs, and offering our publications in a wider variety of digital formats. We will also be working to develop more translations and adaptations of our publications to ensure up-to-date information is more readily available to the more than 80% of people in the world who do not speak English.

We will also continue to offer services that add demonstrable value to our research and publications by more directly helping others to put evidence-based approaches into practice. We will continue to offer specialist training and consulting services. The form these continue to take will likely evolve and will be the subject of a review in 2012.

We will also continue to make the extra effort necessary to ensure that the benefits of current knowledge and best practice are felt by the most disadvantaged children with Down syndrome.

Current and near term research

Current research projects include the landmark study of a structure language and reading teaching programme – the largest ever, and the first major randomised controlled trial (RCT) of an intervention designed for children with Down syndrome is now completed. The findings show sustained benefits of the programme, which will be published next year. We have also just completed a randomised controlled trial of computer-based adaptive memory training program. The findings also show benefits warranting a larger trial with a longer follow-up to explore how improvements in memory influence academic outcomes. Our other ongoing research includes studies looking at early communication and effects of the use of sign on spoken language progress, the emergence of autism and autistic-like behaviours in young children, teaching phonics and teaching reading comprehension, the links between early reading and language development, and the development of grammar in writing.

In addition to studies that we are undertaking, we continue to support other researchers. We are currently supporting staff and postgraduate students at the Universities of Oxford, York, Middlesex, Lancaster and Reading to undertake important studies, currently including investigations of the early predictors of speech and language development, the links between oral motor skills and spoken language development, attention in primary age children and its links with reading and maths progress, the effects of sleep disturbance on daytime learning and behaviour and the ways in which reading and language teaching can support each other.

We also continue to develop plans for future studies and seek the funding for them. These include a large RCT of a speech intervention that we expect to deliver marked improvements in speech clarity, a large RCT of computer-based memory training and its effect on longer-term academic outcomes, a RCT of simple storybook reading techniques that we expect to accelerate language development, and a RCT of techniques that can be incorporated into everyday play with toddlers that we expect to strengthen key cognitive skills in the early years and to lead to lasting effects on academic progress. We are collaborating with other researchers at universities in Europe and North America to develop these studies.

There is still much to learn about the specific learning needs of young people with Down syndrome and we do not yet know enough about many areas of development to have interventions ready for large scale trials. We therefore continue to undertake basic and exploratory research to develop and evaluate new techniques. Currently, we are exploring new strategies for improving reading comprehension and new techniques for improving blending skills (teaching children how to identify the sounds in words and to then blend them to identify the word correctly).

Current and near term publishing

We have several further steps in our See and Learn programs under development for publication later this year and in 2012. These offer step-by-step guidance and resources to support practical activities designed to promote early speech, language and reading, memory and number skills development.

We are developing a handbook to support use of the classroom language and reading program that we have trialled. This will be published in 2012 to help teachers and teaching assistants adopt the program – the first rigorously tested educational intervention for children with Down syndrome.

We are working on updates to Down Syndrome Online. We are seeking funding to restart publication of Down Syndrome Research and Practice as a digital-only journal in 2012.

We are planning updates to the Down Syndrome Issues and Information books and the release of new e-book editions.

Current and near term services

We continue to offer workshops in the UK, training days and conferences, and will shortly be announcing a new program of web seminars. Preschool and school services in southern England and all individual assessment services will remain closed for the time being until we have undertaken a review of future services strategy next year.

We are developing plans for accredited training for teachers and therapists through distance learning courses, and to support the international roll out of the classroom language and reading program we have recently trialled.

New family services, Kyiv, March 2011

We have rapidly achieved marked results in Ukraine where we continue to work to support the Ukrainian Down Syndrome Organisation, thanks to a major Corporate Social Responsibility of EDB ErgoGroup - a leading Nordic IT group. We are now looking to replicate this successful model in other low and middle income countries.

Are we on the right track?

We think we are on the right track to continue to deliver improved educational outcomes for young people with Down syndrome everywhere. We think our priorities and plans fit with what we hear from the hundreds of families and professionals we meet every year. We want to know if you agree.

We will be launching a major international survey of services, support and the needs of people with Down syndrome in the coming months, and asking families around the world to identify their priorities for future research and services.

We will also be offering a series of online briefings on our work that will offer an opportunity for participants to discuss our priorities and feedback their views.

In the meantime, please comment on this post or email me via frank@dsegroup.org with your thoughts.

How you can help

How much we can achieve and how fast we can achieve it depends very much on the financial support we receive from families around the world. The research we undertake helps every child with Down syndrome, no matter where they live – today and for years to come. Much of what we do for young people with Down syndrome today is thanks to the support of donors in the past.

If you can afford to give to support this work, please give generously:

Thank you for your support.

Building a new future for Ukrainian people with Down syndrome

Posted on by Frank Buckley

Last year we began a three year outreach project in Ukraine. Just one year on, the project is already making fantastic progress improving support for people with Down syndrome throughout the country – far more than we could have initially hoped for.

We estimate that there are 10,000-15,000 people with Down syndrome living throughout Ukraine, including 6,000-8,000 children

I first visited Kyiv in September 2008 at the request of (what was then) EDB Business Partner (which, following a merger, is now EDB ErgoGroup). EDB was considering options for a new corporate social responsibility project and wanted to know if we could develop a project that would deliver a marked improvement in the lives of people with Down syndrome living in Ukraine – one of several countries where the company has significant investments.

Kyiv is a former member of the Soviet Union and a country which suffered great brutality in the first half of the twentieth century – first through the two Soviet famines of 1921-22 and (the arguable genocide) of 1932-33 in which over 8 million people died, and then subsequently at the hands of German and Soviet armies during World War II (when a further 7 to 8 million people lost their lives). Following the dissolution of the Soviet Union, the legacy of state control and corruption hindered economic and political progress. Economic output fell 40% during the 1990s. The Orange Revolution of 2004 promised change and despite political turbulence, the economy started to grow again until the global financial crisis of 2008. GDP then fell 15% in 2009. Per capita GDP is currently around $3,000 (around $6,700 based on purchasing power parity) – placing Ukraine among lower middle income countries.

Discrimination against the disabled, violence against women, child abuse, child trafficking and child labour are all commonly reported problems in Ukraine. In general, public understanding of Down syndrome is poor and expectations are low. There are very few early intervention services and very limited educational opportunities for young people with Down syndrome. Doctors, psychologists and speech therapists receive little training in learning disabilities and the limited information available is often outdated. Parents of new babies therefore rarely have an accurate understanding of the condition and maternity hospitals do not encourage families to keep their children. Indeed, it is a legal requirement that doctors offer to take the baby into care when diagnosed.

Around 70% of babies born in Kyiv are taken into state-run orphanages (perhaps more elsewhere).

With very limited public services and little encouragement from professionals or officials, many families make the difficult decision to leave their child to the care of the state. Thankfully, this is starting to change, but we still estimate that around 70% of babies born in Kyiv are taken into state-run orphanages. From birth until around 4 years of age, these young children live in a “baby home”. From 4 or 5 years, they live in a home for mentally disabled children. From 21 years, people with Down syndrome live in a hospital for mentally disabled adults.

There is limited special education provision for children with Down syndrome in Ukraine. There are residential and non-residential educational institutions (internats) for specific categories of disabled children ranging from those with severe disabilities to those with mild impairments and those with emotional and behavioural problems. According to the Ministry of Health in Ukraine, there were 136,000 disabled children in Ukraine in 2004. A reported 65,000 disabled children were enrolled in over 400 institutions.

According to the Ministry of Health in Ukraine, there were 136,000 disabled children in Ukraine in 2004. A reported 65,000 disabled children were enrolled in over 400 institutions.

We calculated that some 600 babies would be expected to be born annually (though official statistics from the Ministry of Health for 2002 and 2003 only record 330 annual births). Given this, we might expect some 10,000-15,000 people with Down syndrome to be living throughout Ukraine, including 6,000-8,000 children.

With substantial difficulties facing people with Down syndrome and their families in the country, a lack of public and private resources, and turbulent political environment, it was far from clear that we would be able to deliver a plan to EDB that had a good chance of succeeding in delivering marked improvements in the lives of these children and adults and their families.

We had tracked down a group of families in Kyiv who had started a national charity to support and advocate for people with Down syndrome. They had already achieved notable success attracting media attention to the plight of people with Down syndrome, holding seminars for families and starting to provide information to parents of newly diagnosed babies.

The new centre in Kyiv

These were considerable achievements, but this was still a fledgling charity, underpinned by a small number of families with few resources. The families told me about the challenges facing them, their aspirations for their children and how they wanted to improve support for people with Down syndrome throughout the country. We set about developing a plan.

It is easy to forget how much has changed for people with Down syndrome in Western countries over the past 40 years. It may not be enough, but it is dramatic. In 1970 life expectancy for people with Down syndrome was 30 years – now (where good healthcare is provided) it is 60. In 1970, people with Down syndrome were considered uneducable. Today (with the right support), we can expect most young people with Down syndrome to achieve useful levels of literacy and numeracy skills, and to learn much from access to a broad academic curriculum. Rising numbers of people with Down syndrome are employed and living with increasing levels of independence.

Education and Healthcare Conference, Kyiv, September 2010

Social change has driven much of this change – coupled with advances in our understanding of the particular medical and developmental needs of people with Down syndrome. Scientific progress driven by clinical, developmental and educational research has driven the development of effective medical care guidelines, early intervention techniques and better teaching practices. The drive for acceptance, inclusion and the recognition of the rights of people with disabilities has helped ensure better standards of care and support are put into practice.

With this in mind, the plan we drew up had five main aims:

  • Improving information and knowledge among families, and healthcare and education professionals to underpin the provision of effective, evidence-based health, early intervention and education services. This would involve the translation, adaptation and publication of up-to-date information about healthcare, early intervention and education, and the provision of conferences and seminars for families and professionals.

  • New early education services in Kyiv

    Providing evidence-based model support services to demonstrate potential and to develop professional experience and expertise, and encourage replication across the country. This would involve the development of a centre in Kyiv hosting support groups, early education services, seminars, advice and consultation services. We would recruit and train professional staff to provide these services and subsequently support others to replicate them more widely.

  • Building expertise and capacity for service delivery and support within the Ukrainian Down syndrome organisation and across state and other nonprofit service providers to create the foundations for lasting improvements and ensure the long-term impact of the project. In addition to professional staff development, this would include helping develop the charity’s administrative, financial and fundraising functions.
  • Improving public awareness and advocating on behalf of people with Down syndrome to promote a more realistic understanding of the condition among the general public, health and education professionals and political leaders to encourage support for effective services and inclusion. This would include proactive and constructive engagement with governmental, non-governmental, professional and academic agencies, concerted PR and targeted campaigning activities.
  • Evaluating outcomes carefully to provide evidence of effectiveness and provide the justification for wider changes in public health and education provision. This would include documenting outcomes from model services, client satisfaction, family needs and researching standards in existing education and health services.

UK Ambassador to Ukraine hosts reception on World Down Syndrome Day

It was clear we could not achieve substantial change overnight and we agreed that we had to commit to a three year project to enable sufficient time to build a sustainable Ukrainian charity equipped with sufficient expertise to deliver a lasting impact.

Last year we finalised our plans and the project agreement between EDB ErgoGroup, the Ukrainian Down Syndrome Organisation and Down Syndrome Education International. The refurbishment of a building in Kyiv to house the charity commenced in the middle of the year.

To mark the start of the project and to begin to spread current information about Down syndrome, we hosted a one day conference in September that offered information about Down syndrome, effective early intervention, education and healthcare, and introduced the Ukraine Down Syndrome Project. Speakers at the conference included Professor Sue Buckley OBE from Down Syndrome Education International, and Dr Phillip Mattheis, a Developmental Paediatrician and member of the US Down Syndrome Medical Interest Group.

New family services, Kyiv, March 2011

Turnout at the conference was excellent, with over 200 parents, educators, healthcare professionals and care staff from orphanages across Ukraine attending. Representatives from the Ministry of Education and the Ministry of Health attended and the conference was reported on five Ukrainian national television channels.

In November 2010 the centre officially opened in Kyiv. In the eleven months since opening, the Ukrainian Down Syndrome Organisation has enrolled 324 families in regular services including new parent support groups, early education classes, and information seminars. In addition, information and training has been provided to hundreds of professionals through conferences, seminars and translated information resources – including the first steps in the See and Learn Language and Reading program.

Children attending a new model teaching project in Kyiv

In a nearby internat (special school), a new model teaching project has recently got underway including children with Down syndrome in an experimental evaluation (officially supported by the education authorities in Kyiv) of more flexible teaching approaches designed to meet individual needs. Legislation was passed in recent years giving families the right to choose the type of school they wish their child to be educated in. However, this has not been backed up with the necessary resources and teacher training, nor the necessary flexibility with regard the state mandated curriculum taught in Ukrainian schools. One consequence has been a rapid rise in the numbers of children with learning disabilities (including children with Down syndrome and children with autism) attending academic internats previously only educating children with milder difficulties and behaviour problems. This model project, supported by funding from the Dutch embassy, Kyiv city education department and local companies, aims to develop curriculum adaptations and individualised teaching approaches suitable for replication and demonstrate how they can improve outcomes.

Addressing guests at a reception hosted by the UK Ambassador to Ukraine on World Down Syndrome Day 2011

On World Down Syndrome Day 2011, Her Majesty’s Ambassador to Ukraine, Leigh Turner, very kindly hosted a reception at his official residence to mark the occasion and celebrate the achievements of the Ukraine Down Syndrome Project. The event was attended by ambassadors, government officials and business leaders from Kyiv and was covered by the major Ukrainian TV channels.

Over 1,000 people throughout Ukraine have already benefited directly from the project, which has attracted the support of the Ukrainian Ministry of Education, Kyiv City education and children’s services. Across Kyiv, some children with Down syndrome are starting to be accepted in mainstream kindergartens. The project has helped to establish parent support groups around the country, and encouraged the formation of a Ukrainian Down Syndrome Medical Interest Group.

Building on the successes of our first year, we are now reaching out to support change across Ukraine and to improve support for the many children with Down syndrome living in baby houses and internats.

Press conference launching Ukrainian editions of See and Learn Language and Reading, October 2011

DSE has supported the Ukrainian Down Syndrome Organisation with information resources for translation, staff training and advice, contributing to seminars, conferences and advice sessions, and assistance with fundraising and business planning.

That said, the success of the project to date has largely been down to the excellent work of the families and staff at the Ukrainian Down Syndrome Organisation. Importantly, this success has been underpinned not just by cash funding from EDB ErgoGroup, but also the expertise and voluntary assistance provided by the company and, in particular, through Infopulse - an EDB ErgoGroup subsidiary headquartered in Kyiv.

We are exploring opportunities to replicate this success in other countries (where there is no shortage of desperate need).

How to help

If you would like to support our efforts to improve support for young people with Down syndrome in low and middle income countries, please donate to our Global Education Fund either through Down Syndrome Education International (a registered UK charity) or Down Syndrome Education USA (a 501(c)(3) US nonprofit). You can also choose to specify you’re your donation supports work in Ukraine:

You may also be able to help by putting us in touch with companies with corporate social responsibility or giving programs with interests in low and middle income countries.

Living with Down syndrome – views of siblings, parents and people with Down syndrome

Posted on by Frank Buckley

An interesting series of articles has recently been published online ahead of publication in the American Journal of Medical Genetics. By Brian Skotko, Susan Levine and Richard Goldstein, these papers present studies surveying siblings, parents and people with Down syndrome themselves.

The surveys asked respondents to rate their agreement with statements on a scale of 1-7, and also
included some open-ended questions.

Views of parents or guardians

The first study evaluated surveys from 2,044 parents or guardians, representing an estimated response rate of 29 percent, finding:

  • 99% of parent/guardians said they loved their child with Down syndrome
  • 79% felt their outlook on life was more positive because of their child
  • 5% felt embarrassed by their child
  • 4% regretted having their child

(Having a son or daughter with Down syndrome: Perspectives from mothers and fathers – doi:10.1002/ajmg.a.34293)

Views of brothers and sisters

The second study evaluated responses to similar questions from 822 brothers and sisters age 9 and older (estimated response rate, 19 percent).

Of the siblings age 12 and older:

  • 94 percent expressed feelings of pride about their sibling
  • 7 percent felt embarrassed by their sibling
  • 4 percent would “trade their sibling in” for another
  • 88 percent said they felt they were better people because of their sibling with Down syndrome

Of siblings aged 9-11:

  • 97% said they loved their sibling
  • 90% felt their friends are comfortable around their sibling

(Having a brother or sister with Down syndrome: Perspectives from siblings – doi:10.1002/ajmg.a.34228)

Views of people with Down syndrome

The third study evaluated survey responses from 284 people with Down syndrome (estimated response rate, 17 percent). The average age was 23, and 84 percent were living with one or both parents/guardians. The findings:

  • 99% said they were happy with their lives
  • 97% liked who they are
  • 96% liked how they look
  • 86% indicated they could make friends easily
  • 4% expressed sadness about their life

(Self-perceptions from people with Down syndrome – doi:10.1002/ajmg.a.34235)

The full papers are freely available online.

Memory training briefing

Posted on by Frank Buckley

Also great to see so many participants again for this evening’s briefing on our memory training study – evaluating the Cogmed memory training program.

Supported by a grant from the UK Baily Thomas Charitable Fund, we have recently completed a randomised controlled trial of an adaptive working memory training programme with children with Down syndrome. The aim of this current project was to evaluate whether it is possible to improve memory skills in children with Down syndrome through repeated practice on a computer.

The computerised training program we evaluated is Cogmed Working Memory Training. This program is a series of working memory games on the computer that children work through, where the child has remember sequences of visual, or visual and verbal information.

 

Classroom language and reading briefing

Posted on by Frank Buckley

It was great to join so many participants online this evening for Kelly’s update on the classroom language and reading trial that we have been running in the UK with partners at the University of York.

** Updated 21 Sep 2011: Added link to session recording **

This randomised controlled trial is evaluating the benefits of a carefully structured teaching programme designed to improve reading and language development for children with Down syndrome. Funded by the UK Big Lottery Fund, the study involves nearly 60 primary schools in two parts of the UK. We are conducting the trial in collaboration with the Centre for Reading and Language at the University of York. It is the first major controlled trial of an intervention designed for children with Down syndrome.

A recording of the presentation can be viewed here. Meanwhile, the slides from the presentation can be downloaded here. Further information about the trial is also available in this article.

Papers from the study are being prepared for publication in scientific journals – we expect them to be published in the first half of 2012. We will also be publishing a handbook describing how to implement the teaching programme. We expect this to be available around May or June next year.

Join us for research briefings online

Posted on by Frank Buckley

We are presenting updates on our landmark classroom language and reading trial, and our memory training trail, next week. Join me and DSE researchers for these free online events.

We are just concluding two of the first controlled trials of interventions designed to improve cognitive development and learning for children with Down syndrome. Final assessments are complete and data analysis is underway in both our landmark classroom language and reading intervention trial and our pioneering evaluation of computer based memory training.

We will be discussing what we have found so far, the implications for education practice, how we will be publishing and supporting the roll-out of the classroom language and reading programme in 2012, and what future studies are in the pipeline.

 

Web sites moves and updates

Posted on by Frank Buckley

Welcome to the new home for my blog. Along with some of our web sites and news feeds, I too have moved. Our new blogs site will make it easier for us to provide news, announcements and blog entries more quickly and more frequently.

In addition to a new blogs site, we are updating our sites to reflect new services and products we are launching over the coming months. This will take a little while, so please bear with us.

If you are hunting for something that you cannot find, here is a list of links to our main news feeds and web sites.

The news feeds now available are:

Our main web sites are:

You can also follow us on Twitter…

…and Facebook: