Down Syndrome Awareness Month

The DEPUTY PRESIDENT (Ms Abigail Boyd):

I welcome to the gallery representatives from Down Syndrome NSW, who are the guests of the Hon. Natasha Maclaren-Jones. I welcome CEO Emily Caska and Ellen Hester.

The Hon. NATASHA MACLAREN-JONES (15:08:12):

I seek leave to amend private members' business item No. 533 for today of which I have given notice by omitting paragraph (2) (c) and inserting instead:

(c)the majority of pregnancies in Australia that are screened as having a high probability of Down syndrome are terminated and that a survey by Down Syndrome Australia found:

(i)69 per cent of families felt that more information is needed to support families to gain a better understanding of the lived experiences of people with Down syndrome and their families;

(ii)49 per cent of families felt pressure from their healthcare provider to terminate their pregnancy or received negative information about Down syndrome;

Leave granted.

The Hon. NATASHA MACLAREN-JONES:

Accordingly, I move:

(1)That this House notes that:

(a)October is Down Syndrome Awareness Month, which is an opportunity to celebrate people with Down syndrome and make others aware of their abilities and accomplishments; and

(b)the message from Down Syndrome NSW for this month is that "People with Down syndrome deserve to be valued and included members of society" and that we all have a role to play in raising awareness about Down syndrome and to promote inclusion and understanding in our society.

(2)That this House acknowledges:

(a)Down syndrome is the most common genetic condition, resulting from the triplication of the twenty‑first chromosome;

(b)approximately one in every 1,100 babies born in Australia, around 290 each year, is born with Down syndrome, highlighting the need for continued support and education in our community;

(c)the majority of pregnancies in Australia that are screened as having a high probability of Down syndrome are terminated and that a survey by Down Syndrome Australia found;

(i)69 per cent of families felt that more information is needed to support families to gain a better understanding of the lived experiences of people with Down syndrome and their families;

(ii)49 per cent of families felt pressure from their healthcare provider to terminate their pregnancy or received negative information about Down syndrome;

(d)the employment challenges faced by individuals with Down syndrome, with only 34 per cent of individuals employed, of which just 8 per cent have open employment positions; and

(e)45 per cent of people with Down syndrome are in mainstream school settings.

(3)That this House recognises Emily Caska, Chief Executive Officer of Down Syndrome NSW, for her leadership in launching Australia's first Down Syndrome Institute on 10 October 2023 in the Parliament of New South Wales, which was attended by over 300 people and members from all sides of politics, including:

(a)the Hon. Natasha Maclaren-Jones, MLC, shadow Minister for Families and Communities, Disability Inclusion, Homelessness and Youth;

(b)the Hon. Damien Tudehope, MLC, shadow Treasurer and shadow Minister for Industrial Relations;

(c)the Hon. Bronnie Taylor, MLC, shadow Minister for Regional Health, Trade and Seniors;

(d)the Hon. Sarah Mitchell, MLC, Deputy Leader of the Opposition in the Legislative Council and shadow Minister for Education, Early Learning and Western NSW;

(e)the Hon. Bill Shorten, MP, Federal Minister for the National Disability Insurance Scheme and Government Services;

(f)the Hon. Chris Minns, MP, Premier of New South Wales;

(g)the Hon. Ryan Park, MP, Minister for Health, Regional Health, the Illawarra and the South Coast;

(h)the Hon. Kate Washington, MP, Minister for Families and Communities and Disability Inclusion;

(i)ambassador and former Liberal leader Kerry Chikarovski, AM;

(j)ambassador and former Australian cricketer Michael Clarke, AO;

(k)ambassador and former Australian rules football player Brett Kirk;

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(l)ambassador and former stars Mitch Edwards and Mark McKie;

(m)ambassador and media personality Fuzz Ali;

(n)ambassador and celebrity photographer Jez Smith; and

(o)ambassador and renowned creative director Lyndal Frollano.

(4)That this House further notes that:

(a)the Down Syndrome Institute will partner with key health, research, and innovation entities, universities, corporate leaders, government agencies and experts both in Australia and internationally; and

(b)the Down Syndrome Institute is committed to establishing Australia's first annual Down syndrome register, a centralised repository of information promoting the Down Syndrome Medical Interest Group Australia, developing an innovation centre and striving to create Australia's inaugural Down syndrome clinic. Each year during October, Down Syndrome Awareness Month is held to celebrate and acknowledge the remarkable accomplishments and abilities of individuals with Down syndrome. It is also an opportunity for Parliament and the community to reaffirm our strong commitment to inclusion and breaking down barriers by raising awareness, advocacy and providing support for individuals with Down syndrome, and for the organisations that work tirelessly to support them, their families and carers. I acknowledge Emily Caska, the CEO of Down Syndrome NSW, and Ellen Hester, who are sitting in the President's gallery. I thank them for their work and that of the organisation.

Down Syndrome Awareness Month was proclaimed in the 1980s following advocacy by the National Down Syndrome Society. Over the past 40 years, organisations like the society and Down Syndrome Australia have held multiple events in support of Down syndrome awareness. Down syndrome is the most common genetic condition, resulting from the triplication of the twenty‑first chromosome. It is estimated that approximately one in every 1,100 babies born in Australia, or around 290 each year, will have Down syndrome. Unfortunately, there is no national data on the number of people with Down syndrome born in Australia. This reflects a broader issue: the potential under‑representation of people with Down syndrome in Australia. Down Syndrome Australia estimates that in 2019 there were between 13,000 and 15,000 individuals with Down syndrome in Australia. What we do know is that people with Down syndrome are living longer and healthier lives than they have in the past.

Much of the statistics and research on Down syndrome has been collated by Down Syndrome Australia. I note their contributions to the recent royal commission and to the National Disability Insurance Scheme Review. Down Syndrome Australia estimates that 90 per cent of prospective parents in Australia choose termination following a high‑chance screening result for Down syndrome. To better understand expectant parents' experiences of prenatal screening, Down Syndrome Australia conducted a survey in 2021. The survey revealed that 49 per cent of families felt pressure from their healthcare providers to terminate their pregnancy; 42 per cent of families received negative information about Down syndrome; 42 per cent of families were provided with incorrect information about Down syndrome by health professionals; 45 per cent of families felt unsupported during pregnancy; 47 per cent of families felt they did not receive adequate information to understand Down syndrome during pregnancy; and 69 per cent of families believed the information provided did not offer insight into the experiences of people with Down syndrome and their families.

That is why, raising awareness of the work of organisations like Down Syndrome Australia and Down Syndrome NSW is so important. Last week, in Parliament House, Down Syndrome NSW launched Australia's first Down Syndrome Institute and announced the ambassadors for the Down Syndrome Foundation. The Down Syndrome Institute, which is funded through philanthropic support—and I acknowledge all contributors—will collaborate with key health, research and innovation entities, universities, corporate leaders, government agencies and experts, both in Australia and internationally. The institute will establish Australia's first Down syndrome register to centralise much‑needed data, as well as promoting the Down Syndrome Medical Interest Group Australia and the development of an innovation centre, with the aim of creating Australia's first Down syndrome clinic.

I also acknowledge Down Syndrome NSW for their Congratulations Initiative, which began in August last year. This initiative is funded by donations to ensure that a congratulatory message is sent for every diagnosis of Down syndrome, and not an apology. Furthermore, it provides up‑to‑date, evidence‑based information on Down syndrome to expectant parents, offers support to new parents and medical professionals, and is working to reshape the narrative around Down syndrome.

Down Syndrome Awareness Month highlights the need to support individuals, families and carers, as well as organisations like Down Syndrome NSW, the Down Syndrome Institute and its initiatives. We all have a vital role to play in raising awareness about Down syndrome and a responsibility to advocate for an inclusive, compassionate and understanding society. We must challenge stereotypes and provide accurate, balanced and evidence‑based information to parents. Our duty is to offer hope and possibilities, not despair and limitations. The message for this year from Down Syndrome NSW is simple: People with Down syndrome deserve to be valued and included members of our society. I am sure this message resonates with all of us, emphasising the principle that every individual should be embraced as an integral part of our diverse society.

The Hon. PENNY SHARPE (Minister for Climate Change, Minister for Energy, Minister for the Environment, and Minister for Heritage) (15:13:50):The Block

On behalf of the Government, I thank the Hon. Natasha Maclaren‑Jones for bringing this motion to the Parliament so members can spend time talking about the importance of the work of Down Syndrome NSW, its Ambassador Ceremony and, most importantly, to celebrate people with Down syndrome in our community. On Tuesday 10 October Down Syndrome NSW held its inaugural Ambassador Ceremony in the Strangers' Restaurant. The event was an incredible success. There were over 300 people in attendance, including many people with Down syndrome, their families and supporters. Down Syndrome NSW announced its ambassadors, who included in attendance former Australian test cricket captain Michael Clarke, AO, former Sydney Swans captain Brett Kirk, former stars of Mitch Edwards and Mark McKie, media personality Fuzz Ali, celebrity photographer Jez Smith, renowned creative director Lyndal Frollano, and former Liberal leader Kerry Chikarovski, AM.

Down Syndrome Awareness Month celebrates the strengths and achievements of people with Down syndrome. The Ambassador Ceremony was an important way to bring those people together, and to highlight the incredible work done by Down syndrome organisations and how lucky we are as a society to have people with Down syndrome in our workplaces and families. I draw attention to some facts about Down syndrome. It is the most common genetic condition in the world, caused by the triplication of the twenty‑first chromosome.

Approximately one in every 1,100 babies in Australia is born with Down syndrome, which equates to around 290 born per year. I note the comments of the Hon. Natasha Maclaren‑Jones that more data collection work is needed around this. It is important to note that 34 percent of people with Down syndrome are employed, of which only 8 percent are in open employment. We can do far more to reach employment targets in the public service. There are people who work in the public service who are great contributors to their workplaces—in fact, they are some of the best workers that we have. They just need to be given a chance. I call on all employers to think about the opportunities they can offer to people with Down syndrome.

Forty‑five per cent of people with Down syndrome are in mainstream school settings. There is a lot of discussion about this. We want to have more children with Down syndrome being educated in our mainstream schools. My children benefited greatly from being able to attend primary school with their mates who have Down syndrome. They are still friends to this day. There is a lot of misinformation about Down syndrome. We need to pause and reflect, and to thank Down Syndrome NSW and other organisations for the work that they do to provide support and advice to not just parents but also the medical community. I give a shout‑out to all of those advocates with Down syndrome who are working in health settings, employment settings and generally bringing attention to what they are able to do and how they want to be included.

Ms ABIGAIL BOYD (15:17:04):

I speak on behalf of The Greens in support of this amended motion and thank the Hon. Natasha Maclaren‑Jones for bringing it. I acknowledge the representatives from Down Syndrome NSW who are in the gallery today, and all those who work so incredibly hard every day to raise awareness, increase solidarity and achieve real tangible improvements to people's lives across this State. Down Syndrome Awareness Month celebrates the strengths, achievements and contributions of people with Down syndrome in our community. It also calls on everyone in society to do better, to break down barriers to inclusive education, health services, employment, access to infrastructure like transport and housing, and all other areas of society. Last month I attended the Disability Pride Festival, held in Ashfield Civic Centre, which had as its theme "Solidarity Not Charity". Members of the disability community spoke about how important this notion is and that what is needed is not virtue signalling or superficial words but real and direct action that is going to make a difference in people's lives.

I also had the pleasure of attending an event held by the Council for Intellectual Disability this morning here at Parliament House. We heard from people with intellectual disability and from advocates about the problems currently facing people with intellectual disability. As we have heard, Down syndrome is the most common genetic cause of intellectual disability. After 12 years of the former Coalition Government, I have been frustrated that we have not seen the attention on people with disability that those people—upwards of 20 per cent in this State—really need. I am looking forward to this Labor Government making inroads in this area. I have to admit, so far, I have been a little disappointed.

For example, we heard this morning about how within Transport for NSW there had been a change of the ferries icon to the letter "F" and trains to the letter "T". There was no consultation with people with intellectual disability when that change occurred. It has been incredibly problematic. I know that happens a lot in the Transport portfolio, but at every briefing we receive from the Government on bills these days I ask, "Have you consulted with representatives of people with disability in this State?" Unfortunately, the answer that keeps coming back is no. I hope that the disability royal commission and calls for inclusive education, inclusive employment, accessible housing et cetera will mark the turning point where we can work in a whole-of-government, cross‑party way to finally achieve real change in New South Wales to help people with disability.

The Hon. SUSAN CARTER (15:20:24):

"People weren't sure what to say to us. They mostly said they were sorry, which irritated. But we understood they meant well. Some said 'congratulations' and it was marvellous to hear", said Robin, mother to Sophie. Sophie has Down syndrome, and Robin and her family are members of Down Syndrome NSW. Led by Emily Caska, Down Syndrome NSW is an energetic, member-focused organisation seeking to provide practical support to its member families and lead the public conversation so that our stated goal of inclusion for all has a real and practical expression. A great example of the practical focus of Down Syndrome NSW is its "congratulations, not sorry" initiative, led by Melissa Cotterill. That is a direct response to stories like Robin's. It recognises the number of pregnancies with a diagnosis of Down syndrome that are terminated but also that that decision is often based on outdated information, unrelenting pressure to terminate and discussions about limitations, not possibilities.

The initiative aims to nurture, support, inform and connect families upon diagnosis through to the child being one year old, and to upskill and partner them with medical professionals so that they can provide accurate, timely and current advice. The initiative also aims to gather and share family stories to support other families, to ensure that we have statewide data on annual birth rates of Down syndrome and to ensure the very best start for all people with Down syndrome. Most importantly, when a pregnancy is confirmed and a diagnosis of Down syndrome is made, it aims to deliver a message of "congratulations, not sorry". Sean is the parent of a two‑year‑old boy with Down syndrome. He said, "It would have been such a great experience if we received a 'congratulations' from the medical professionals instead of an 'I'm sorry'. If I could change one thing in the system that would be a big one."

Through its practical, supportive work, Down Syndrome NSW stands with families and walks with individuals with Down to achieve that change. I commend and congratulate it on the quiet, constant, loving and supportive work it does. Our society is so much richer for its contribution and the way in which it shines a spotlight on the members of our society with Down syndrome—in Down Syndrome Awareness Month and in every month. I celebrate the effectiveness of its work and the tremendous feedback it gets from its initiatives. I congratulate Emily Caska, Melissa Cotterill and Down Syndrome NSW. Yet again, they identified a need and sought to practically meet it. I congratulate them on all the good they do in this and every other month.

The Hon. BOB NANVA (15:23:28):

I begin by thanking the Hon. Natasha Maclaren-Jones for moving the motion. We have come a long way from the time when people with Down syndrome were written off and seen as cases to be managed rather than possibilities to be nurtured. However, there is still a lot of misinformation about Down syndrome in our community. Those misconceptions provide an invisible barrier that can affect the day‑to‑day lives of people with Down syndrome, not because they cannot strive for greatness but because people's misconceptions get in the way. The network of parents, siblings and supporters of those with Down syndrome know it. If members are fortunate enough to know someone with Down syndrome, they also know it.

Most people with Down syndrome will say that it is not a condition they suffer from, and most people close to them will say that comments conveying sympathy or sorrow for them belie the joy that people with Down syndrome bring into their lives. That is why events like the Ambassador Ceremony are so important. I am so pleased that it was an outstanding success last week. It shone a light on the fact that today there are many people with Down syndrome who, depending on their ability, attend mainstream schools and that many adults with Down syndrome provide labour with dignity in their communities. They have hobbies, passions and talents and a desire for self-determination that is as strong as anyone else's. In Australia many people with Down syndrome perform in roles as diverse as project managers, authors and artists, and they do an outstanding job. They do not just bring joy to the lives of their friends and family; they make very worthwhile contributions to our communities. We are all the better for the role they play in our lives.

The Hon. DAMIEN TUDEHOPE (15:25:24):

In 1958 the late Jérôme Lejeune discovered that Down syndrome was associated with an extra copy of the twenty-first chromosome. That extra chromosome is sometimes called the "happiness chromosome", reflecting the 2011 study that found that 99 per cent of people with Down syndrome indicated that they were happy with their lives. People with Down syndrome now have an average life expectancy of 60 years, a dramatic increase from a life expectancy of 25 years just 40 years ago. Sadly, Down Syndrome Australia reports that following a prenatal diagnosis of suspected Down syndrome 49 per cent of families felt pressure from their healthcare provider to terminate their pregnancy. And 42 per cent of families said they received negative information about Down syndrome from health professionals, including information that they now know to be untrue. What is wrong with those who are conducting a search and destroy screening program for Down syndrome that results in 90 per cent of those suspected as having that extra happiness chromosome being destroyed before birth? Who do they think they are?

Discrimination against those with disabilities takes many forms, but when it involves intentionally ending the lives of human beings because they have, or are suspected to have, a disability, then that discrimination is deadly. The United Nations Committee on the Rights of Persons with Disabilities has called for those countries with abortion laws that allow abortions later in pregnancy, specifically on the grounds of disability, to repeal those discriminatory laws. Heidi Crowter, a 27-year-old married woman with Down syndrome, who has led a series of legal challenges to the United Kingdom's discriminatory abortion law, poignantly stated, "The law that allows abortion up to birth makes me feel that I am not wanted and loved. It makes me feel not valued and that people don't want babies like me. I think the law is downright discrimination. People like me should not be discriminated against." I wish success to Heidi and all those from Don't Screen Us Out in their latest challenge in the European Court of Human Rights, and I wish every happiness to all those in New South Wales with Down syndrome, along with their families, friends and colleagues.

The Hon. EMILY SUVAAL (15:27:57):

I congratulate Down Syndrome NSW on its Ambassador Ceremony last week. I thank the Hon. Natasha Maclaren-Jones for moving this important motion. The event last week was an incredible success. Several hundred people were there from all sides of politics. It was a wonderful occasion to highlight the importance of continuing this conversation and emphasising the possibilities. I was heartened to hear stories from former Australian test cricket captain Michael Clarke of his employment, his "boss", his experience and how much he had learned on his journey. He is now an ambassador for Down Syndrome NSW. I make particular mention of the CEO, Emily Caska. I thank and commend her for her incredible work in bringing together this event but also for the energy that she has brought to this organisation. I also acknowledge Ellen, who is in the Chamber today. I thank her for her advocacy and all her important work in helping to educate people like us in this place about all the possibilities that are out there.

Down Syndrome is the most common genetic condition in the world, caused by the triplication of the twenty-first chromosome. Approximately one in every 1,100 babies are born with Down Syndrome in Australia, which is 290 per year. Thirty per cent of people with Down Syndrome are employed, of which only 8 per cent are in open employment. That really highlights the work we have to do to improve that statistic. Forty-five per cent of people with Down Syndrome are in mainstream school settings, so we still have work to do there. Pleasingly, the life expectancy of people with Down Syndrome is increasing—obviously thanks to advances in medicine. It is now at 60 years. People with Down Syndrome have an enormous role to play in our communities, our economy and in all workforces. It is sad that misinformation is still rife, but I commend the work of Emily and Ellen for helping to correct a lot of that misinformation to ensure that the possibilities, and indeed the playing field, are equal for people with Down Syndrome now and into the future.

The Hon. AILEEN MacDONALD (15:30:51):

I too thank the Hon. Maclaren-Jones for moving the motion relating to Down Syndrome Awareness Month. I also attended Australia's first Down Syndrome Institute event last week in Parliament and was impressed by the work that is being done by Down Syndrome NSW. Its work includes education and training, support and advocacy, community participation programs, prenatal expert advice, new parent resources, and specialist employment preparation and connection. I was made aware of some very positive facts about the progress that has been made, particularly regarding the life expectancy for those with Down Syndrome and the quality of life they can expect to have. As has been mentioned already today, the average life expectancy in Australia for a person with Down Syndrome is 60 years. Thanks to advances in medical diagnosis and treatment, and changes to societal attitudes, people with Down Syndrome are living longer and have more meaningful and fulfilled lives.

Children with Down Syndrome are encouraged to attend regular schools rather than institutions. Many now learn to read and write, and enjoy life at school. Some people with Down Syndrome have gone on to complete college degrees and hold regular jobs. Each person with Down Syndrome, whilst having some level of intellectual disability, has the capacity for a full, joyful and meaningful life. Like all of us, they have different skills and needs for support. They also have the same need for love, connection, community and purpose. I thank the Down Syndrome Institute for the great work that it is doing. By sharing the wonderful stories of those with Down Syndrome, parents can be equipped with facts rather than fear when dealing with a Down Syndrome diagnosis. The termination rate for Down Syndrome babies in utero is currently 90 per cent. It would not be so high if parents were empowered with resources and knowledge that a life with Down Syndrome can be a very good life indeed. So this month let us celebrate people with Down Syndrome and share the message that they deserve to be valued and included members of our society.

The Hon. NATASHA MACLAREN-JONES (15:33:30):

In reply: I acknowledge members who have contributed to this debate: the Leader of the Opposition, Ms Abigail Boyd, the Hon. Susan Carter, the Government Whip, the Hon. Emily Suvaal and the Hon. Aileen MacDonald. Down Syndrome Awareness Month is an opportunity for us not only to celebrate people we may know but also to remember others. I remember my great Aunt Joyce and the happy times I had growing up with her when I was child. It also is an opportunity for members of this House to have discussions and debates to raise awareness.

I am proud of the fact that New South Wales led the way in rolling out the NDIS and also for implementing the disability inclusion plan. As the Leader of the Opposition said, there is always more that can be done irrespective of who is in government. That is important. This month is a chance to raise awareness and identify issues as well as highlight the work of organisations like Down Syndrome NSW. I thank it for its work and for establishing the Down Syndrome Institute. As has been highlighted, the more information we can gather from research the more it will allow governments to make informed decisions about the services and funding that are needed. I again thank Down Syndrome NSW for all its work and I thank members for supporting the motion.

The DEPUTY PRESIDENT (The Hon. Rod Roberts):

The question is that the motion be agreed to.

Motion agreed to.

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