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Supporting People With Down Syndrome in Ukraine

EVRY and Infopulse together with the Ukrainian Down Syndrome Organization (UDSO) and Down Syndrome Education International (DSEI) embarked on a major project in 2010 to improve support for people with Down syndrome and their families in Ukraine. This three-year project was aimed at delivering information resources, advice and education services, and encouraging social and political change to improve the lives of the estimated 10,000 people living with Down syndrome across Ukraine.

In general, public understanding of Down syndrome in Ukraine is poor. The families of children diagnosed receive little encouragement from professionals or officials, and many children with Down syndrome are confined to baby hospitals and then orphanages. 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and speech therapists receive little training in learning disabilities and the limited information available is often outdated.

As a father, I know how difficult it is to get knowledgeable healthcare, early intervention and education for children with Down syndrome in Ukraine. Families are encouraged to abandon their children when they are diagnosed. We want to change this. We want to ensure that people understand Down syndrome and that better support is provided. We are very excited to have secured this support from EVRY and Down Syndrome Education International. We could not have wished for more supportive or better qualified project partners. – Sergey Kuryanov, President of the Ukrainian Down Syndrome Organization

Positive changes

As part of their commitment to Corporate Social Responsibility, EVRY  and Infopulse, together with Down Syndrome Education International and Ukrainian Down Syndrome Organization partner to leverage financial support, volunteering, and expertise from EVRY and  Infopulse, as well as expertise from DSEI.

EVRY aims to meet its social responsibilities through initiatives that are tailored to our core operations — IT — and our primary locations — the Nordic countries, India and Ukraine. We are committed to ‘build competence’ at all levels of our community involvement. We believe that this is an area in which we can make a positive contribution not only financially, but also through applying our competence and knowledge to the benefit of society. We are delighted to be working closely with the Ukrainian Down Syndrome Organization and Down Syndrome Education International to deliver lasting and meaningful social change in the communities in which we work. – Laxmi Akkaraju, Senior Vice President of Global Sourcing, EVRY (the former EDB ErgoGroup)

This is an important project that promises to deliver much needed change for people with Down syndrome in Ukraine and for their families. Infopulse is proud to be supporting this work in Kyiv and across the country. – Andrey Anissimov, Infopulse CEO

The Ukraine Down Syndrome Project has five key goals:

  • 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.
  • Providing evidence-based model support services to demonstrate potential and to develop professional experience and expertise, and encourage replication across the country.
  • Building capacity for service delivery and support within the Ukrainian Down syndrome organization and across state and other nonprofit service providers to create the foundations for lasting improvements and ensure the long-term impact of the project.
  • 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.
  • Evaluating outcomes carefully to provide evidence of effectiveness and provide the justification for wider changes in public health and education provision.

Bringing corporate expertise and resources

Since starting in July 2010, the project has helped the UDSO acquire and refurbish the services centre in Kyiv, employ professional staff, translate and publish up-to-date information about health and medical care, early intervention and education for people with Down syndrome.

To mark the start of the project and to begin to spread current information about Down syndrome, a one day conference was hosted in September 2010 that offered information about Down syndrome, effective early intervention, education and healthcare, and introduced the Ukraine Down Syndrome Project.

Besides financial support, EVRY and Infopulse have been utilising their core competencies in IT as well as volunteering from the companies’ staff to work directly with children, adults and their families in Ukraine.

UDSO Website

UDSO websiteIn December 2010 UDSO has launched the new website developed by Infopulse volunteers. The new user-friendly website will supply both the families of children with Down syndrome and professionals with the up-to-date useful information, free resources, advice, helpful contacts and help professionals and families with children with Down syndrome throughout Ukraine to stay connected.

Arranging the Territory

Infopulse arranging UDSO territoryIn April 2011 Infopulse organized its staff members to help clean the UDSO’s territory to prepare it for planting trees and flowers.

Silver Coin

Infopulse joins Silver CoinIn May 2011 Infopulse joined the UkrSibbank initiative — “Silver Coin” campaign aimed at raising the costs needed for printing the See and Learn Language and Reading program for Ukrainian children with Down syndrome. During the 2 month of the campaign, the donation boxes were placed in Infopulse offices in Kyiv, Zhytomir and Lugansk, contributing to the overall 292 424 UAH donated by UkrSibbank’s clients and different organizations throughout the country.

The Open Hearts Cup

The Open Hearts CupOn the 14th of May, 2011 Infopulse sponsored the first charitable futsal tournament for corporate teams “The Cup of Open Hearts” held by UDSO. The tournament participants (5 corporate football teams and the UDSO parents’ team) have collected 53,000 hrn for early development programs for children with Down syndrome. The organizers of “The Cup of Open Hearts” are planning to hold the tournament annually. Since then, Infopulse supports this initiative on a yearly basis.

Infopulse has also provided volunteer support for different UDSO activities:

  • Continuous professional photo sessions
  • IT office support
  • Assisting in professional staff recruiting
  • Translation and preparation of information materials, booklets and brochures
  • Help with professional design of informational materials
  • Administrative office support

We are delighted to be able to support this project. We have worked closely with EVRY and families in Ukraine to develop thorough plans to deliver improved services that will meet local needs. The Corporate Social Responsibility approach has worked exceptionally well — not only bringing finance, but also expertise and local knowledge from EVRY and Infopulse. This has added tremendous value to the project as a whole. – Frank Buckley, CEO of Down Syndrome Education International

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.

The Ukrainian Down Syndrome Organization

The Ukrainian Down Syndrome Organization is a Ukrainian charity. It was founded in Kyiv by parents of children with Down syndrome with the aim of helping people with Down syndrome and other genetic disorders and their families. The charity is working to provide high quality information and services for people with Down syndrome and their families, and to encourage more positive attitudes towards people with disabilities throughout Ukraine.

http://www.downsyndrome.org.ua

Down Syndrome Education International

Down Syndrome Education International  is the leading global nonprofit serving young people with Down syndrome and their families. The UK-based charity works to ensure successful education for young people with Down syndrome through scientific research and evidence-based information and support services. For 30 years, the charity has advanced scientific research investigating language, cognition, memory and speech development, literacy, numeracy, and education, developing teaching techniques that improve the lives of many thousands of people living with Down syndrome today. Today, Down Syndrome Education International works in partnership with Down Syndrome Education USA, a US-based nonprofit organization, to support families, teachers and therapists, researchers and organizations in over 180 countries, helping more than 100,000 people each year.

http://www.dseinternational.org

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