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House of Assembly - Fifty-Fourth Parliament, First Session (54-1)
2019-12-04 Daily Xml
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Motions

Down Syndrome

Ms COOK (Hurtle Vale) (13:30): I move:

That this house—

(a) celebrates the lives and achievements of South Australians living with Down syndrome and the contribution they make in our local communities; and

(b) recommits to ensuring South Australians living with Down syndrome can fully participate in society through strong, progressive legislative leadership.

It gives me great pride to move my motion today supporting people in our community who have Down syndrome. Many of us in our community would know people with Down syndrome, so today I move this motion.

Down syndrome is a genetic condition where the chromosome number is affected within the DNA of the embryo. It is a condition which can be detected very early on in a pregnancy. In fact, these days you can detect that condition within the first couple of months quite categorically. As we know, people with Down syndrome, like all people in our community, are different. Each one of them is different and each one of them has a different capacity in terms of their ability to function and their level of independence in living with disability in our community.

People who are pregnant, families who are going through the journey of pregnancy, often will choose to have screening for Down syndrome as one of a number of genetic and other medical conditions that can be detected in pregnancy. As I said before, these days we can detect that diagnosis quite early. I wanted to raise the point within this that we need to have choice, we need to have support and we need to have proper counselling and love for the people who are going through this very difficult time.

I can talk from a very personal experience on a number of levels, just to bring this together. I was pregnant at the age of 43. It does not take a genetic counsellor to understand that the risk of having a baby with Down syndrome is much more likely; in fact, I think it is something like a one in 32 chance at an older age. There is also a range of other genetic conditions that can be diagnosed. At the age of 43, my husband and I had older children and we were financially stable and sound, and we felt that we would be able to support and love a child with Down syndrome no matter what. We knew there were other genetic conditions that are more life limiting.

We decided that we would screen only for a range of conditions and that if our child, our baby, had Down syndrome we would continue with pregnancy and monitor the medical status of the child throughout the pregnancy, knowing that babies with Down syndrome can have severe and significant life-limiting cardiac problems, severe and life-limiting other medical problems. My husband and I felt strong and that we could provide a loving home for a child with Down syndrome, so we stopped the screening once we were confident there were no other detectable conditions, we rode the journey and we did not know.

Our son does not have Down syndrome, but I have friends whose children do. Some of them also made that decision, that they were in a position where a baby, a child, with Down syndrome could be loved, supported, cared for, nurtured and thrive in their house. But I also have friends who decided they could not, and for them my heart aches for the decision they made based on what their family could provide.

I thank all the people involved in providing pregnancy support, love and care and pastoral care for people, understanding that not every baby or child develops the same and that there are different levels of capacity and ability to enjoy a productive life. That is why in a modern society, in here, in this place, we must do all we can to provide for safe and loving choices to be made.

I want to thank all the people in our community, like my friends, who love, care for and provide wonderful support for a child, an adult child—some little children, toddlers—with Down syndrome. I watch their love, I watch their patience, I watch the variation in behaviours, I watch the different levels of education that children can achieve and I watch the support workers who deliver care and love to those children, and I thank them.

As legislators, as people with the capacity to provide the best possible support in the community through legislation, through funding, we need to work together to ensure that these families do not have to screen for health counselling during pregnancy where they are not given all the options. I hear people say they do not hear all the options spelt out. They hear terror, doom and gloom or they hear sunshine and lollipops; it is not the case. It can be such a varied journey.

I hear about people with children with Down syndrome who have incredibly challenging behaviours. It takes some children 10 years to learn what our children who do not have a problem take only weeks to learn. In terms of education, the community and the NDIS, for example, we want to make sure that what is on offer is accessible, it works, it is flexible, it is agile and it allows for families to have choices.

I have just spoken, and over many weeks I have spoken, about the pregnancy advisory clinic and the service provided for counselling through pregnancy. I wish to acknowledge many people in the gallery today who have been involved in the counselling, support and love for these families who need to have safe and dignified choices. I thank them for what they do. I thank them equally, as I thank community organisations that provide care, support workers, love, compassion and opportunities for many people living with Down syndrome in our community. They now have more options than they have ever had before.

They have the opportunity to complete school. I have never seen such happy faces as those of people with disabilities, such as Down syndrome, when they complete their SACE, their schooling and their traineeships. I thank them for that. We in this place need to make a commitment to ensure that we do everything we can, that choices are real across the full life trajectory, that choices are there and that choices are available. I commend the motion.

The Hon. V.A. CHAPMAN (Bragg—Deputy Premier, Attorney-General) (11:40): I move to amend the motion as follows:

Delete paragraph (b) and insert in lieu thereof:

(b) is committed to policy and legislative leadership that builds upon the vision that all South Australians living with disability have equal opportunities to fully participate in our community. This includes people living with Down syndrome

After paragraph (b) insert:

(c) acknowledges the legislative leadership of the Marshall Liberal government who ensured the passage of the Disability Inclusion Act 2018 as the first piece of legislation passed through parliament under the new state government.

I note the mover of the motion has sought that we celebrate the lives and achievements of South Australians living with Down syndrome, and I fully endorse her comments in that regard. As is well known I think to most, Down syndrome is a genetic condition. It causes a level of intellectual and developmental challenges, and some of the health risks have been identified by the mover of the motion.

However, people in these circumstances are affected in very different ways. We have about a thousand South Australians who suffer from Down syndrome, and there are somewhere between 15 and 20 babies born a year with Down syndrome. It is important that we all recognise—and this motion does serve to do this—that people living with Down syndrome have the same ambitions and goals as each and every one of us who may not suffer from that condition but that to achieve those goals with Down syndrome is likely to require a much different level of support. Raising public awareness is important, and World Down Syndrome Day, celebrated each year on 21 March, is an important addition to the recognition of the month.

On 3 December (that is, yesterday), the International Day of People with Disability was celebrated with a range of other events across Adelaide, and I am advised that this Friday ParaQuad SA, Lifetime Support Authority and Brain Injury SA have organised the event Celebrate on the Square at Victoria Square between 11am and 3pm, and I urge any members who are available to support that.

What has actually happened is important to recognise. Since the passing of the Disability Inclusion Act 2018—part of our first 100 days commitment—we have continued to build on that commitment by developing and introducing a range of policy initiatives. The first was on 31 October this year, when the government gazetted the state's first disability inclusion plan, Inclusive SA. It is an important document. I urge members to read it. It sets a blueprint for how we might undertake a number of initiatives in this regard.

Obviously, it requires developing an event toolkit to promote accessible and inclusive practices. We need collaboration, we need to explore opportunities, and they are all matters that are underway. The inclusive playgrounds program has been launched, and the first Inclusive Play guidelines have been published. This is a really important initiative because in the design of our playgrounds we need to accommodate the needs of children.

The Disability Advocate, I am proud to say, has been Dr David Caudrey, and under our government his term as the Disability Advocate has been extended until June 2020. We think that in this new area of disability service delivery the extension will assist in ensuring that the issues arising from national reforms are identified quickly, and it is important that we action those.

Can I also refer to the South Australian Transport Subsidy Scheme. Following strong advocacy from our government, at the COAG Disability Reform Council on 9 October this year the federal government agreed to fund the continuation of the state government's SA Transport Subsidy Scheme until 31 October 2021. That is signed up. The NDIA will commence this process from mid next year with respect to the continuation by ensuring that we, of course, in the meantime continue to use the taxi vouchers until individual plans are reviewed and adequate individual transport needs are addressed.

It is important to note that originally SATSS was extended until the end of the year whilst advocating for a long-term solution to ensure the most vulnerable are protected. Unfortunately, during this process the state Labor opposition were continuing to create alarm for people living with disability over transport issues, resulting in unnecessary stress. It must be noted that it was the previous Labor government that created the issue of agreeing to cash out SATSS to the NDIS without a plan in place, which has led to uncertainty for many people.

Under other initiatives that I think are really exciting, we had the announcement of a commitment to the City of Adelaide in March this year of $1 million to build Quentin's playground, an inclusive play space, commemorating the legacy of disability advocate, actor and filmmaker, Quentin Kenihan. He was a really fun, young man.

Sadly, Quentin passed away, but he was a strong advocate and it is important that we recognise his contribution and ensure that we have play spaces that include sensory elements, water play and features that encourage shared play and that are suitable for children and parents in wheelchairs. Obviously, we are specifically acknowledging those who have health challenges that might accompany Down syndrome.

On Global Accessibility Awareness Day, on 16 May this year, the government launched a new online accessibility policy and online toolkit to assist all South Australian organisations to create more accessible digital platforms. I am proud to say that South Australia reached full-scheme transition to the National Disability Insurance Scheme (NDIS) in June this year. Obviously, we have committed $749 million to the NDIS to support the delivery of quality services for South Australians, and we will continue to work with the commonwealth to maximise the opportunities for those who require it.

The National Disability Strategy 2010-2020 is about creating 'an inclusive Australian society that enables people with disability to fulfil their potential as equal citizens'. The state government is also working with the commonwealth and other states and territories to develop the new national disability strategy for 2020 and beyond once the current strategy expires. I also bring to the attention of the house the matter of the federal royal commission.

As a new government, we have committed $5.5 million in the 2019-20 state budget to establish a dedicated central response unit to address and coordinate the South Australian government's response to the commonwealth Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. This is in addition to commitments made earlier in the year to provide $3.2 million to set up a similar response unit solely focused on the Royal Commission into Aged Care Quality and Safety, a unit that has already undertaken significant work in coordinating the state's response.

This royal commission is obviously very broad. It may take some time to implement under the responsibility of the federal government, but I note that it had the support of both major parties leading up to the federal election. We have put money on the table to make sure that this is an effective assessment. Whilst that is an important investigation dealing with matters of abuse, neglect and the like, I would like to conclude on a happy note.

Of the thousand people who live in our community who have Down syndrome and the families who support them, who provide that extra support, we recognise you, we see you and we are committed to ensuring that you have the opportunities of others who do not face the same challenges as you do. This government has lined up the first piece of legislation to make sure that happens.

Ms COOK (Hurtle Vale) (11:49): I thank the Attorney-General for her contribution. I indicate that we will not be supporting the amendment. Principally, the private member's motion that I moved was intended to be apolitical. It was intended to celebrate a group of people in our community who, for many, many years, have not had opportunities and celebration.

In fact, for many years people with Down syndrome were institutionalised, locked away, ignored and not seen. Now, because of the great work of many organisations and many wonderful families, people with Down syndrome are very much part of the community, as everybody is part of the community. They participate, they thrive and, in spite of the challenges, they are able to effectively undertake education, work and a whole range of things. On this side, we will not support amendments that introduce political argument into the motion.

I am sure that everybody in this place has been invited to and is attending or has attended Disability Day activities over this week and seen so much of the joy that is happening. It also brings to light many conversations. Firstly, I congratulate the previous minister for disability (member for Reynell, now shadow minister for multicultural affairs, women, sport and racing in this place) on leading that initial introduction of the Disability Inclusion Act. Had it not been for the ending of parliament, that would have come under the Labor government.

I acknowledge that it was definitely a priority as it came through under the incoming Marshall Liberal government. However, in the last month or so, since the release of the act and further discussions, I have had quite a number of people in my circle of people with disability who keep me abreast of things—and I have to say that circle is in the many hundreds who communicate regularly via various sources—say that they think it is weak. They actually do think it is weakened.

Over the break, I will be working to establish why they think it is weak and why it is not what they expected it to be. Only last night, I was approached by a wonderful advocate in the community, a woman living with disability, a very high-achieving legal woman, who swore and said it was p-weak. I respect her take on that. I do not have the lived experience of living with disability. I can only go on what other people say and I trust these people are disappointed.

We will not be supporting the amendment, but I respect and appreciate the genuine nature underneath that of the Attorney-General's passion and support for what is ostensibly a motion to celebrate and a motion to bring us together across all party lines to support people in our community with Down syndrome to make sure that they live the best life possible.

Amendment carried; motion as amended carried.

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