Alby Schultz (Hume, Liberal Party) Share this | Hansard source

There are a tremendous number of people in communities across Australia who are working tirelessly to effect change for the better in the lives of others. The Right Start is one such group of people I am proud to say are living and working to effect positive change for young families who face the joys and challenges of having children born with Down syndrome. The Right Start was established in 2009 as a support group for parents who had given birth to children with Down and enables mothers and fathers to share in the highs and lows of raising a young child with Down. This organisation is small and, although it has its beginnings as a support group run by mothers of children with Down, for mothers of children with Down, this marvellous group of women, refuse to accept that more cannot be done.

I will give you a small illustration of what these women have achieved so far. Mrs Glenda Graban, the founder and voice of The Right Start in the Wollondilly and Macarthur region, came to the office of the former member for Macarthur, the honourable Pat Farmer MP, in early 2009 to discuss a technical issue she was having with a government department at that time. She just so happened to mention to the staff that she had just given birth to a little boy, Jake, who she discovered had been born with Down syndrome. Jake was a blessing and that he had Down syndrome made absolutely no difference to the love she and her husband felt for him. It just meant that they would have to make some adjustments to their lives that they had not expected to make.

She told the staff that several weeks after she had come home from the hospital she received a letter from the New South Wales Department of Health. The letter contained a certificate that stated that Jake had been placed on the birth defects register to acknowledge that he had Down syndrome. She showed the staff the document and said that she felt very strongly that this sort of letter from the government did not seem right and she could only imagine what effect the receipt of such a document would have on a young family who were struggling to cope with the discovery that their child had Down syndrome or any other form of disability, such as cerebral palsy.

The staff advised her to make representations to the New South Wales health minister and that if she was unsuccessful in that she should rally community support through the media, as the New South Wales Labor government had up to that point not made any moves to change the insensitive wording of such an important document. As Glenda has said, the term ‘defect’ is something that you refer to if something is wrong with your car, not a child who is born with a condition that is out of their control.

So Glenda had to pursue her fight through the media to change this document. As an aside, it is disappointing to note that in this modern political landscape an ordinary citizen has to go to the extreme of having to generate her own media campaign because bureaucrats in government departments lack the common decency and sensitivity to right a wrong. Thankfully, her media campaign was successful, and in New South Wales parents will no longer have the government deem their children as defective. Instead, parents will be informed that their child has been placed on what is now called the congenital conditions register and they have Mrs Glenda Graban to thank for that.

I think the whole House would agree that this was a victory for common sense and decency, but Glenda’s experience of giving birth to a child with Down syndrome shaped her call to action with other mothers in the Wollondilly-Macarthur region. Their shared experiences are as one and tell a story of a system in New South Wales where there is a lack of early intervention support dedicated to children with Down syndrome. It is a system that provides minimal, if any, support to new parents who may be struggling with the notion of having a child with Down syndrome. It is a system that fails to adequately inform families of children with Down syndrome about programs and assistance that is available to them, aside from their local paediatrician or general practitioner.

The recognition that there was a dire need in communities such as the Wollondilly-Macarthur region for a service for families with Down syndrome is what led Glenda Graban and other just as dedicated mothers to form the organisation The Right Start. I have had had several meetings with The Right Start—one of which was with the then shadow minister for child care and women, the member for Murray—and the current member for Macarthur in which The Right Start has outlined its future plans to expand the purview of the group to incorporate government recognised and approved early intervention programs for children with Down syndrome in conjunction with establishing a centre to operate these programs from. Thus far, through the tireless work of the men and women involved in The Right Start, the organisation has managed to raise just on $25,000 in their own right and are pleased to announce the staff from Coles grocery stores in the region have matched that effort by raising an equivalent $25,000, bringing the total fundraising effort in one year to $50,000, with the aim of reaching $150,000 for the purchase of a house to establish a centre by March 2011.

Considering The Right Start has only been up and running for just over 12 months, it is a tremendous effort and all involved ought to be congratulated for their efforts. However, more can be done, and I believe that more can certainly be done from a federal government perspective, to assist these brave women in any way we can. According to the New South Wales Department of Health, 53 of the 171 children born with Down syndrome in 2008-09, or nearly one third, lived in the south-west Wollondilly-Macarthur region. If there is ever to be a centre for families who have children with Down syndrome, it should be in the region I and the member for Macarthur represent.

I have alerted the Minister for Families, Housing and Community Services and Indigenous Affairs, the Hon. Jenny Macklin MP, to the work of this outstanding organisation and have commended to her the benefits of directing federal government funding towards making the centre The Right Start wishes to establish a pilot program. These discussions will hopefully continue, and I wish to acknowledge the minister’s open-mindedness to this proposal thus far. It is encouraging to see that the federal government made a commitment to early intervention for children with disabilities in the A Better Start in Life for Children with Disability commitment that directs funding of up to $12,000 up to their sixth birthday to children who have conditions such as blindness, fragile X syndrome and Down syndrome. This commitment from the Labor government at the election was for this money to be spent on early intervention programs such as the one that The Right Start is proposing.

I am significantly impressed with the efforts that The Right Start have made themselves to establish their own centre for over 30 per cent of the families in New South Wales who have children with Down syndrome. Glenda Graban and her team of dedicated individuals and families have recognised there is a gap in support for families with children with Down syndrome and have made tremendous strides to ensure this gap is closed. Their work ought to be encouraged and rewarded by government, which has the capacity to provide that support. I look forward to continuing my representations along with the member for Macarthur to have The Right Start given the support and the funds necessary to have its programs and centre established with government assistance as either a pilot program or as a program recognised for funding under the federal government’s A Better Start for Children with Disability program. Either way, Glenda Graban has certainly shown what can be achieved when recognising that a wrong should be righted, and her commitment should be a healthy reminder to all Australians of the need to assist our own.

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