International Day of people with Disability - Down Syndrome Australia launches new resources

Today, 3rd of December 2014, is International Day of people with Disability - a UN sanctioned day to recognise the rights and abilities of people with disability, celebrated around the world.

Down Syndrome Australia launches new resources for health professionals, expectant parents and those with a new baby with Down syndrome

The time around diagnosis can be an emotional and overwhelming time. As the national peak body representing people with Down syndrome and their families, we encourage health professionals to have a contemporary view of Down syndrome today, and to support parents as they seek the important information they will need after discovering their baby has/may have Down syndrome.

As Non-Invasive Prenatal Screening (NIPS) becomes more accessible and more mainstream, it is foreseeable that these tests will become a routine part of healthcare during pregnancy. We believe it is important for health professionals and expectant parents to keep some important points in mind when considering any form of prenatal screening or testing for Down syndrome.

Down Syndrome Australia believes that any offer of prenatal testing should include:

• An understanding that prenatal testing is voluntary
• Accurate and relevant information about the test and the conditions that are being tested for
• Sufficient time for prospective parents to deliberate about this information in the context of their existing values and beliefs
• Access to genetic counselling and relevant support services such as Down syndrome organisations in each state and territory

Unfortunately, the current level of care experienced by prospective parents does not always meet this standard. Parents say they often feel pressured into making certain decisions quickly, when what they need is time, information and respect to make decisions appropriate to their own particular beliefs and circumstances.

The resources are:

• An online prenatal fact sheet available on the DSA website 
• A new 1300 national support phone line to link parents to their local organisation 1300 881 935
• National New Parent Guide
• A short video, Down Syndrome Today, aimed at health professionals to encourage a contemporary view of Down syndrome today and end the out-dated, negative stereotypes of Down syndrome and encourage a more balanced approach when working with families, particularly in the prenatal period. This video is available on You Tube with closed captioning.

The video, the online prenatal resource and a fact sheet, 'What is Down Syndrome?' will soon be available on the Healthshare online platform for easy access by health professionals.

The new resources are only part of the support provided by state and territory associations, and we encourage parents to contact their local association to link in with the other supports they can offer.

• Down Syndrome Australia media release, 3rd December 2014 - New resources for health professionals and new and expectant parents