Shortly after my son was born with Down syndrome in 2000, representatives of my local Down syndrome organization visited Downside Up, an early intervention center in Russia. When Andy was about a year old, I read their newsletter article about this trip where they reported that more than 90% of the children with Down syndrome were institutionalized in Russia and that the parents of children with Down syndrome often faced isolation and discrimination.
My first gut reaction was that I wanted to adopt a baby with Down syndrome from one of those institutions, but, because my husband's company specialized in translations at the time, I thought we could help even more children if we could offer good information and support to new parents. I contacted Downside Up to see what we could do to help, and we started down the path of translating Woodbine House's "Babies with Down Syndrome" into Russian to distribute books at maternity hospitals throughout Moscow. By 2012, the institutionalization rate dropped from 95% to less than 50% in Moscow.
In 2011, I visited Yekaterinburg as a US Speaker with Amy Allison, the Executive Director of the Kansas City Down Syndrome Guild, who trained their local parent group to hand out new parent baskets. We had the opportunity to share ideas with disability leaders in the region about inclusion, education, early intervention, grassroots advocacy, and parent support. The institutionalization rate in Yekaterinburg has dropped in 5 years from 80% down to 20%, according to Maria Taff at the US State Department. She said, “This is the result of work of [the local charity] ‘Sun Children’ and the U.S. experience which they effectively use!” With education and support, more families are raising their own children at home and becoming advocates who also contribute to the broader Down syndrome community.
There are families all over the world who face challenges due to social stigma, language barriers, and lack of support, information, or civil rights laws. Even in the US, there is a significant disparity in life expectancy between different ethnic populations … largely because of access to services. But we can all take steps to help each other as part of an international family that is increasingly connected online. Here are 3 steps to get started.
1. If you’re interested in helping a particular area of the world, reach out to a reputable NGO in that region and ask what you can do to help. They often have many ideas to share. Be prepared to discuss what skills you can offer. You can find reputable international organizations at Down Syndrome International.
2. Encourage your local organization to translate materials and share links to translations. Our National Center recently translated our nationally recommended “Understanding a Down Syndrome Diagnosis” into Spanish, Korean, Vietnamese, Somali, Chinese, Russian, and Japanese to help even more families understand the meaning of a diagnosis, but this free resource is only effective if those families can find it. NDSS and NDSC also offer many translations in Spanish.
3. Encourage any organizations you are involved with to include diverse representation on their boards to make sure all voices are heard and proactively engage in outreach to diverse communities.
Even sitting at home on your computer, you can make a difference for someone who may be feeling alone and isolated and looking for resources. You can find a project that you can do today to benefit someone across the globe or in your own backyard—and you’ll be building a network for the day when we can all help each other and share ideas.
About the Author Stephanie Meredith is the author of Understanding a Down Syndrome Diagnosis and is the Information Services Director/Medical Outreach Director at the Human Development Institute - University Center for Excellence in Developmental Disabilities at the University of Kentucky.
