Once again the time has come for Down's Syndrome Awareness Week (8th - 14th June) - I can't beleive a whole year has passed since we posted about last years when we featured a video made by the Stepping Stones Down Syndrome Support Group (still worth a peek if you've not seen it) and two years since we included Down's Syndrome Awareness Week 2007 on our blog featuring a lovely photo of a friend's little girl.
This year The Down's Syndrome Association's awareness week is entitled: Tell It Right, Start It Right.
This year the charity are campaigning for high quality information to be given to parents after they have received a prenatal or postnatal diagnosis of Down's syndrome. They want the Government to make it law that accurate and up to date information and support is available to parents when they are told their baby has Down's syndrome.
Research from the Down's Syndrome Association and the Foundation for People with Learning Disabilities has revealed huge disparities in the quality of information and support for parents when they are given a pre or postnatal diagnosis of Down's syndrome. Some have excellent and knowledgeable healthcare professionals. Others are given negative, confusing and unhelpful information. They think there should be legislation that ensures consistent and accurate information for people who are given a diagnosis of Down's syndrome or other prenatally and postnatally diagnosed conditions. This has recently become law in the US and you can read their legislation here. In the US it's now law that the following is provided: Up-to-date, evidence-based, written information concerning the range of outcomes for individuals living with the diagnosed condition, including physical, developmental, educational, and psychosocial outcomes as well as contact information regarding support services, including information hotlines specific to Down's syndrome or other prenatally or postnatally diagnosed conditions, resource centres, national and local peer support groups, and other education and support programmes.
Please take the oppotuinty to Sign the DSA's petition on the Government website to make it law that accurate and up to date information and support is available to parents when they are told their baby has Down's syndrome