|Lancashire Down's Syndrome Support Group|
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|LDSSG is a parent-led support group.
We aim to support families and carers and all those with an interest in Down's Syndrome in and around Lancashire.
We are a registered charity and are affiliated to the National Down's Syndrome Association.
|Down's Syndrome Awareness Week
8th - 14th June
Tell It Right, Start It Right
|This year the DSA is campaigning for high quality information to be given to parents after they have received a prenatal or postnatal diagnosis of Down's
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.
When you had your child with Down's syndrome, how much information were you given?
Did you have a knowledgeable healthcare professional who explained in detail about Down's syndrome?
Were you given contact details for the DSA and current leaflets?
Or perhaps you were given an out-of-date leaflet and left to find out about Down's syndrome yourself.
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.
The DSA believes 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. You can read their legislation.
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.
• 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.
What to do now?
Sign the DSA's petition on the Government website
Download the DSA's PDF guide to Down's Syndrome Awareness Week 2009 and find out how you can help by getting involved this year
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