Down Syndrome

Mrs VLAHOS (Taylor) (12:26): I move:

That this house—

(a) recognises that 21 March 2015 is World Down Syndrome Day;

(b) congratulates Down Syndrome International on the 10^th anniversary of World Down Syndrome Day; and

(c) acknowledges the continuing work of the Down Syndrome Society of South Australia in their support of families and carers of those living with Down syndrome.

I would like today to speak about something that is dear to my heart. It is to recognise that we are approaching 21 March 2015, which is World Down Syndrome Day. The motion aims to congratulate Down Syndrome International on the 10^th anniversary of World Down Syndrome Day and acknowledge the continuing work the Down Syndrome Society of South Australia provides to support families and carers living with Down syndrome.

It is important that this government supports this motion because this is an important time for the Down community in South Australia, as living with Down syndrome has increasingly become a story of choices and opportunities and enjoying a full life with equal rights and the support of their family and community. The day is designed as a way of raising awareness about the potential of people with Down syndrome, highlighting the challenges many people with Down syndrome have faced and providing self advocates with a global platform to speak for themselves with lived experience in this condition.

The focus of this year's 2015 World Down Syndrome Day is 'My Opportunities, My Choices— Enjoying Full and Equal Rights and the Role of Families'. Down syndrome does not discriminate. It crosses all ethnic and social groups. There are approximately 13,000 people in Australia with Down syndrome and almost 1,000 of those people live in South Australia.

Research has shown that the likelihood of a parent having a child with Down syndrome increases with older mothers. While the likelihood of a woman under 30 having a Down syndrome child is less than one in 1,000, this increases as you age to one in 400 at 35, and one in 60 at 42. This is why prenatal testing is encouraged for all women over the age of 35, so that they can adequately prepare for the child's special needs.

Certainly, as a person who had her children later in life, I went through the prenatal screening for my second child, and I almost did not achieve a pregnancy there. I went through this screening process on the day of my birthday. Seeing the odds come up on the screen, and then having a scan that said my son had a likelihood of one in 79 of having Down syndrome, is one of the reasons why I am particularly passionate about this, because it places a whole plethora of Pandora box choices that you might not ever want to have made in front of you, but you have to think about the livelihood of the person that you are caring for forever and the good quality of life that person could have in our society in a just world.

People with Down syndrome have some level of intellectual disability, a number of characteristic physical features and often a range of health conditions and developmental challenges. This does not stop people with Down syndrome striving for a fulfilling, successful life and being the best they can be at whatever career or life choice they make in the world. The abilities, needs and choices of each individual with Down syndrome are unique and varied, just as they are in the rest of the community, and equally valid.

For instance, American Horror Story actress Jamie Brewer recently became the first woman with Down syndrome to walk the runway in the New York Fashion Week, and I think that is a fantastic achievement. She is taking part in a role model program that is changing the way we look at things. 'Role Models Not Runway Models' is a campaign to change the way we look at beauty. Jamie was also elected to the State of Texas ARC Board at the age of 19, and is now a disability activist.

There are many other similar success stories of people living with Down syndrome enjoying a fulfilling life and leading examples to others. For many things, they are shaped by their family's experiences, by their cultural, environmental, and social factors. Down syndrome people have the right and the choices that many of us in society take for granted, but they still have to fight along side prejudice about their condition.

I wish to acknowledge the critical and enduring role families play in supporting, empowering, teaching and advocating for their family members with Down syndrome. The next step is for the broader community to continue a cultural shift towards full inclusion of everybody. This is gradually being realised through drivers such as the United Nations Convention on the Rights of Persons with Disabilities, and the National Disability Strategy.

The current supports available through the state government and non-government disability services providers and the future National Disability Insurance Scheme further facilitate opportunities for people with Down syndrome to live independently, pursue and hold down employment, be connected socially and within their community, and have healthy, fulfilling lives and relationships.

I wish to acknowledge the continuing work of the Down Syndrome Society of South Australia for all they do in facilitating these opportunities for people with Down syndrome. They truly put their hearts into their hands and lead the community with this, they lead their families so strongly, and they embrace diversity. Well done to you. The state government, through the Department for Communities and Social Inclusion, has also created an enduring partnership with this organisation and appreciates the positive and special work they do with their families and the community in general.

The 10^th anniversary of World Syndrome Day on 21 March 2015 provides an opportunity for us to recognise that people with Down syndrome are entitled to the same rights, choices and opportunities as the rest of us. It also provides a point of time to say thank you to the many loving family members and carers, aunts, uncles and extended family members who support their child, sibling or friends with Down syndrome to lead a worthwhile, fulfilling and well-lived life.

Dr McFETRIDGE (Morphett) (12:32): I rise to support this motion from the member for Taylor. The incidence of disabilities in Australia is becoming more recognised. The NDIS provides a new world for people with disabilities, and certainly amongst the tens of thousands of Australians who have a disability there are many people who have Down syndrome.

I first became aware of Down syndrome (or trisomy 21, as it was then put to me) when I was a student teacher many years ago at Western Teachers College, studying educational psychology and some special education topics. By 'syndrome', we mean that it is not like the measles or catching a cold; it is a collection of clinical signs and manifestations, and it can manifest in many ways. I will talk about that in a little while.

The fact that Down syndrome is an in-born error of genetics is something that we need to recognise. People who have children that are born with Down syndrome should feel completely blameless. It is just one of those things that happens. There is nothing you can do to prevent it. There is no lifestyle you can live to reduce your risk. It is just one of those things that happens.

Unfortunately, we do not yet know how to prevent Down syndrome occurring, and there is no evidence to show that the age of the father is an indicator of the prevalence of Down syndrome, or an indicator as to whether the child will have Down syndrome; it is the age of the mother. As the mother gets older, the incidence does increase quite significantly.

As to the actual manifestation of Down syndrome, trisomy 21, we all have 46 chromosomes in 23 pairs numbered from 1 to 23, and we have a pair of chromosome 21, and with Down syndrome there is an error that occurs at conception where, when the conceptus or fertilised egg divides, each cell has three chromosomes 21, so it is known as trisomy 21. Then that goes on to manifest in what we see as the physical and mental attributes of a person with Down syndrome, and they can vary quite widely. The IQ levels, the abilities and the looks can vary quite widely.

To see how we have come from looking at people with Down syndrome and describing them as Mongoloids and Downies and that sort of thing to now recognising that they are a very valuable part of our society, and always should have been—how times change and I think very much for the better.

The need to recognise and support people with Down syndrome is only part of the whole issue we are facing in South Australia, or nationally, but particularly here in South Australia and this parliament. Part of our job as members of parliament is to support those organisations, particularly the NGOs and the volunteers—there are thousands of them out there, supporting people with disability—who in this particular case are supporting people with Down syndrome, and their families, because without the family support the cost alone would be horrendous to bear, never mind the impact on the people with Down syndrome.

I have obviously had a fair bit of exposure to people with Down syndrome through having Minda in my electorate for many years. It is just on the outer boundary now; I have had to let it go to the member for Bright, but I still have a lot to do with them. They are undergoing redevelopments on the campus to improve the facilities that are available, and one of the facilities they are developing at Minda is an aged-care facility for people with disabilities. People with Down syndrome used to live to 20 or 30 years of age if they were lucky, but because of modern medications and advancements, we are able to give people with Down syndrome a much better quality of life, so that they are now living into their 50s and 60s. Having the new facilities at Minda to provide aged care for them is a very good thing.

I have had parents come to see me through my shadow ministry with disabilities and communities and social inclusion who are very worried about the future of their children, with all sorts of disabilities but, particularly, in some cases, Down syndrome. They are worried about what their future is going to be. With the NDIS, we have raised expectations, so we need to make sure we do deliver, but I hope we are able to solve a lot of those problems and calm a lot of those fears. Also, through assisting organisations like Minda and Down Syndrome South Australia, we can make sure that those parents of people with Down syndrome are given support and can have the confidence that their family members will be looked after.

Down Syndrome SA is an amazing organisation. They undertake a range of support activities for families of people with Down syndrome and those individuals with Down syndrome. They have networking events (parents to parents and parents to other services and agencies), early intervention programs and ongoing support for parents and families of people with Down syndrome. They run transition support programs for children moving from early intervention to their local preschools and schools, which is a very important transition period for families and a very stressful time, so it is great to see the work that Down Syndrome SA is doing.

Down Syndrome SA's work with family support and advocacy is something that is a vital part of making sure that not only people with Down syndrome but their families are given the support and the courage to go on and make sure that their family members achieve everything that we expect they should be able to achieve in South Australia in 2015. That includes the extended families, including their grandparents. I do not know how many people in this place are grandparents, but I am a grandparent. I am going to Grandies' Day at my grandson's school tomorrow. I am looking forward to that with great enthusiasm.

Down Syndrome SA also continues with life education. The life education program promotes life skills for people with Down syndrome who have left school. They start with the youngsters right through to those who have left school. It is an important part of recognising that people with Down syndrome now can contribute in many ways to our society, and Down Syndrome SA are doing a terrific job. They are setting goals for the individuals and they are helping them achieve those goals. Whether they are getting into work or gaining life skills, it is all part of that program.

I was lucky enough to be at Government House when there were some presentations by the former governor, Hon. Kevin Scarce, to people from Down Syndrome SA, recognising their work, particularly the volunteers. I was lucky enough to be there to see a demonstration from the dance group Dance Down. Dance Down is an amazing group of young people with Down syndrome. They put on a short segment for us in Government House to show off a routine they did at the World Down Syndrome Congress in South Africa. They did a dance called, 'Things you didn't know about me'. I understand that this was the highlight of the congress gala dinner on the last evening. Having seen the little bit we saw at Government House, I can imagine that it would have been an amazing event not only for the families and the people there but particularly for the young dancers.

The other very emotional part of being a member of parliament can be when you get to interact with people with intellectual and other disabilities and see what they are achieving. I have been involved with the Special Olympics organisation for a number of years now. When you see those youngsters, some of whom have Down syndrome, returning from their Special Olympics events, particularly if they have won medals, it is an amazing thing. Congratulations to Down Syndrome SA. I support the motion.

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 10^th 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.

Mr KNOLL (Schubert) (12:47): I thank the member for Taylor for bringing the motion to the house. It is extremely worthwhile, and I thank all the other speakers who have already spoken to it. The previous speakers have canvassed what Down syndrome is and its growing population in Australia. In paying homage to this motion, I will talk about some of the good work that is done in my electorate in this area.

I am pleased to say that the first learning disability-led film festival in the Southern Hemisphere—the Sit Down Shutup and Watch Film and New Media Festival—was held in my electorate last October. This inaugural festival was held in the Angaston Town Hall—a good 300 metres from my house. Unfortunately, I was not able to get along to it, but the festival screened digital art and films written and directed by people with a learning disability, and there were 43 film entries from across Australia and overseas. The aim of the festival was to give people with a disability a voice by creating their own digital arts and film culture. It is an extremely worthwhile project and one in Schubert's very own backyard that I am extremely proud of.

Perhaps the most pre-eminent organisation in my electorate that looks after people who have a disability is Barossa Enterprises, and it is a model that is extremely worthwhile. In fact, in the Barossa we have education and career pathways that are able to give people with Down syndrome—amongst other disabilities—good quality care and good quality satisfaction in their lives through being able to give them meaningful employment. Tanunda Primary School has a unit that deals with special needs children, including those with Down syndrome, and it does an extremely good job of it. I was lucky enough to go there for their anniversary earlier in the year and have a discussion with the students. You could see how the entire school community cared for those who needed care and help. It is amazing how far, as a society, we have progressed, to the positive culture around helping those in need as opposed to issues of bullying and stigma, and it is beautiful that we have the next generation coming through.

Once these children have graduated from Tanunda Primary School, they go on to do their high school education at Nuriootpa High School, which is an institution that has now grown to have 980 students from my electorate, and I can safely say that they need a bit of extra space. When I visited, the principal was showing me where he needed to put extra students. The high school campus has two units, as they call them; it is two lots of 20 students. They have one purpose-built unit that is enclosed. Some of the kids who they are dealing with are severely disabled to the point where they need to make sure that the environment is safe, that they cannot escape and run onto the road, and things like that. They have two separate units, but they would dearly like to take the second unit and have a purpose-built facility built for it so that they are able to return the unit to a classroom.

They do a fantastic job. I have met and interacted with the teachers there. When I was at Nuri high school's graduation ceremony last year, a number of the kids from the unit graduated. To see the way in which those kids interacted with their peers was extremely heart warming. It was not a culture of pity, it was not a culture of anything other than celebrating the beautiful and kind spirit of the kids who are part of the unit. You could tell that there was a real camaraderie between the students. We talk a lot in this place about changing culture, and hopefully the Down next generations will have a different attitude towards these things.

Once these kids from Nuri high have completed their secondary school education, a lot of them go on to get employment with Barossa Enterprises, which I was lucky enough to visit last year. To give you a bit of background, Barossa Enterprises was established in 1978 and it has offices in Nuriootpa and Clare. It is committed to providing and securing opportunities for people with a disability to work and live within the community. As I said, I was there in November last year. Barossa Enterprises sells three main products.

The first is 'community lifestyle connexions', where it offers tenancy support, recreational activities and crisis transition accommodation for the people who work at Barossa Enterprises. It has supported employment services and helps to develop training and career goals for those with a disability and individual plans. Also, as part of that section of the business, they have a community garden. I was quite excited to tour the community garden, because I was in awe of what these guys were able to do compared to the meagre efforts of my wife and I in our garden. They grow so much fresh produce that they then try to use in the canteen to feed the guys. It gives them a really strong understanding of where their food comes from and it helps provide a more holistic approach to helping these people.

Perhaps the biggest part of the business is 'woodwerx'. This is where the real employment opportunity is within Barossa Enterprises. Barossa Enterprises creates wine boxes, crates and pallets for the wine and fruit industry. Every time you get one of those special fancy bottles—a normal 750ml, a magnum, or something bigger—Barossa Enterprises are the ones that build the boxes. These are not your cheap plywood types of boxes. These are beautiful pieces of art that are stamped and embossed, and they come in all manner of shapes and sizes, with hinges and finishes. To see the way these things are made is quite awe inspiring.

I was lucky enough that Karina Piro, who works in marketing, and Garry Veldt, the CEO, showed me around the floor. As you walk around, you can see that this is not make work employment. These people are creating a beautiful product. They are competing in the marketplace on equal terms with other commercial businesses, and they are able to survive.

The support of the Barossa wine community in supporting this business is fantastic. They are some of the biggest names in wine that you will see and hear about, from Henschke to Peter Lehmann. The whole gamut uses this business and service and the beautiful products that they create. They also make wood pallets and crates that are used in the fruit and vegetable industry. These guys have pride in the work that they do and, also, their strong commitment to health and safety and strong commitment to producing quality articles is really quite inspiring and I would like to thank them very much for their work.

I would also like to take a few seconds to talk about Riding for the Disabled. It is located on the Angaston-Nuriootpa road (which is, again, probably a couple of kilometres from my house) and they do work with people with Down syndrome. Riding for the Disabled helps to develop fitness and concentration in a social atmosphere, and develop muscle tone for those with a disability. Again, it helps to provide another avenue to provide a fulfilling, meaningful and normal life to people with a disability. On this score, I am extremely proud of my electorate and community for coming together and providing solid, strong pathways for well over 100 people with Down syndrome in my community, and I commend them for their efforts.

Mr GARDNER (Morialta) (12:56): I am very pleased to speak on this motion acknowledging the continuing work of the Down Syndrome Society of South Australia and Down Syndrome International on the 10^th anniversary of World Down Syndrome Day. I do so for three primary reasons. As shadow disability minister for a period of time, I particularly appreciated the engagements and interactions I had with the Down Syndrome Society of South Australia. I know they work very hard to deliver services and assistance to children with Down syndrome as well as families of children with Down syndrome and, indeed, adults with Down syndrome. They provide services and effective advocacy on behalf of that group.

Secondly, having staff in my employment who have been family members of children with Down syndrome has brought to my attention (not having any family members with Down syndrome) the challenges that can be faced, and they are itemised succinctly by Down Syndrome International, which particularly drew attention to the challenges that children and adults with Down syndrome often face, as follows: being abandoned, subjected to abuse and segregated from their communities; being discriminated against and treated unequally in education systems; being discriminated against and having health conditions misdiagnosed by health systems; limited opportunities to live independently, work and be fully included in the community; a lack of control over the right to marry and have relationships and families; and limited opportunities to vote, participate in public advocacy or be elected to public office.

Sometimes I think there are some people who, unfortunately, through carelessness, perhaps, do not even refer to children and adults with Down syndrome as people first—as children or as adults—but just talk about the issue of Down syndrome itself. I have enjoyed meeting and knowing the children and adults with Down syndrome whom I have encountered, and I think on World Down Syndrome Day the challenges they face are worth reflecting on in our positions here. I commend the mover of the motion for bringing it to the attention of the house and I am sure that all members will join us in supporting this motion right now.

Motion carried.

Sitting suspended from 12:59 to 14:00.