Thursday 19 March, 2015

Mr TARZIA (Hartley) (12:42): I commend the member for Taylor for her motion today. I know that this cause and other great causes are dear to her heart and it is fantastic that she has raised this issue in this place. I also recognise that 21 March 2015 is World Down Syndrome Day and congratulate Down Syndrome International on the 10th anniversary of World Down Syndrome Day. I also acknowledge the continuing work of the Down Syndrome Society of South Australia in their support of families and carers of those living with Down syndrome.

As we have heard, Down syndrome (also known as trisomy 21) occurs, in most cases, at the point of conception, where a baby is conceived with an extra number 21 chromosome. We have also heard that it is not caused by anything that parents might or might not do. It is said that the condition affects approximately one in 1,150 live births in Australia. Down syndrome is the most common single identified cause of intellectual disability. The severity of its effects on physical and intellectual functioning varies widely amongst different individuals. People who are born with Down syndrome share some common features, but they also may inherit many of their own family's characteristics.

It is said that children born with Down syndrome have an increased risk of developing a wide range of ongoing medical and health problems, including hearing problems, vision impairment problems, respiratory illness, thyroid malfunction, heart defects, gastro, hypotonia, musculoskeletal issues, skin conditions, leukaemia, epilepsy and also Alzheimer's disease. These health issues often impair their physical and intellectual development.

It is pleasing to at least see that over the last 30 years, the average life expectancy of a person with Down syndrome has definitely increased from less than 30 years of age to today where we see that people with this syndrome are living well into their 60s. I have a second cousin who is in her 40s and has this syndrome, and it is pleasing that, whilst the medical advancements have not come anywhere near as far as we would like, at least people with this disability are living longer and longer.

It is said we know how Down syndrome occurs but it is not known why it happens. That is where we as humans are trying to fight for equality, to make sure that people with this syndrome have the dignity they deserve and try to improve their overall health; try to assist those people who live with this disability to move forward. We are called to do what we can to improve outcomes for these people, and I absolutely commend the continuing work of the Down Syndrome Society who work very hard ensuring that people retain their dignity and attain the best quality of life whilst living with this syndrome. I understand that a test for Down syndrome can be carried out before a baby is born. However, Down syndrome is usually first recognised at birth and confirmed by a blood test. It was named after Dr John Langdon Down, who first described it.

World Down Syndrome Day is a global awareness day and it has been officially observed by the United Nations since 2012. Each year, the voice of people with Down syndrome—and those who live and work with them—grows louder. Obviously, there is still so much we can do, and this motion is testament to our calling to do what we can and encourage our friends, and the communities we represent, to choose their own activities and events to help raise not only awareness of Down syndrome, but also to fundraise for the cause and educate people about how those with Down syndrome play a vital role in our lives and the communities around us. This is a wonderful cause, and I commend the member for Taylor for raising the motion, and I commend it to the house.