Friday, October 14, 2011

Building a new future for Ukrainian people with Down syndrome
Posted on October 2, 2011 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and speech therapists receive little training in learning disabilities and the limited information available is often outdated.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:
Donate to Down Syndrome Education International
Donate to Down Syndrome Education USA
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.