The Music in Me - ABC 1, Monday 9th June 2008

Some of the Merry Makers performed at On a Wing and a Prayer in April.

The Merry Makers includes many people who have Down syndrome - you might well see someone you know on ABC1 at 9.35 pm on Monday 9th June, in Enough Rope with Andrew Denton. This media release marks the latest award for The Music in Me:

The Music In Me - the debut documentary feature by Sydney filmmakers, Nigel Traill and Anne Kenyon has continued its scintillating run of success on the world festival circuit with another win at the Tenerife International Film Festival and a sale to ABC Television.

At a glittering awards ceremony in Tenerife in the Canary Islands in April, the deeply engaging Australian film received the Best Documentary Award bringing to five the number of awards garnered by The Music In Me.

• Winner Best Documentary Tenerife Int. Film Festival
• Most Inspiring Documentary Sedona Int. Film Festival
• Winner Best Documentary Monaco Int. Film Festival
• Humanitarian Angel Film Award Monaco Int. Film Festival
• Winner Best Documentary Avignon Film Festival

Described as ‘One of the most inspiring documentaries you’ll ever see!’, now Australian audiences will get the chance to view The Music In Me. ABC Television has bought the documentary and will be screening it as a special on Enough Rope with Andrew Denton on Monday 9th June at 9.35pm on ABC1.

At its world premiere in June, The Music In Me was awarded the prestigious Prix Pierre Salinger for Best Documentary at the 24th Annual Avignon Film Festival - the first time an Australian film had been screened in the history of the event.

Lisa Nesselson, European film critic for Variety has called the The Music In Me “A portrait of sheer human decency in the face of adversity… it’s hard to imagine a halfway thoughtful TV programmer – or audience – that wouldn’t warm to the heartache and triumph captured here.”

The Music in Me tells the profoundly moving story of the Merry Makers - a unique dance troupe based in Sydney comprising 70 dancers with some intellectual or physical disability who dance their way into the hearts and minds of all who see them perform. During the 63-minute documentary feature, the dancers and their families are filmed with engaging tenderness, empathy and candour as they prepare for the biggest show of their lives – a sell-out concert at Sydney’s Entertainment Centre.

To date, the documentary has been screened in Avignon (France), Montreal (Canada), Os (Norway), Texas (USA), New York (USA), Monaco, Calcutta (India), Sedona (USA), Milan (Italy) and will be screened in the UK in June 2008.

Links:

• Merry Makers Australia
• The Music in Me
• Enough Rope, ABC1

State-Commonwealth Disability Services Ministers’ Conference

Communiqué

Supporting People with Disability, their Families and Carers

30 May 2008

People with disabilities, their families and carers will benefit from a $1.9 billion boost in funding under a new agreement reached today at a meeting of Disability Ministers in Sydney.

State and Territory Disability Ministers agreed to deliver $900 million in funding, on top of the Australian Government’s $1 billion commitment.

This is a major step forward for Australia’s disability system, which has been hamstrung for years by buck-passing and a culture of reactive crisis management, to the detriment of those it is meant to support.

The $1.9 billion is expected to provide around 2,300 in-home support places, 2,300 supported accommodation places, 9,900 individual support packages and 10,000 much needed respite places, in a range of forms, across Australia.

While today’s agreement marks a valuable and strong first step in addressing unmet need, Ministers acknowledged more needs to be done.

All governments agreed that access to services would be provided on a case-based approach, to ensure people with disability receive appropriate services when needed.

Ministers also agreed to deliver 309 new supported accommodation places through the $100 million in capital announced by the Prime Minister on May 4th which will start to be rolled out immediately.

In total, there will be more than 24,500 places that will begin to ease the anxiety of people with disabilities, their families and carers, many of whom have been waiting too long for support.

The Australian Institute of Health and Welfare has estimated that the total unmet demand for accommodation support and respite services for people with disabilities, their families and carers is around 23,800.

Ministers also agreed to bring about improvements in the areas of advocacy, measurement of unmet need; innovative policy development, quality assurance; research and national consistency for the provision of aids and equipment.

With an emphasis on working smarter, these improvements will be outcome focussed, driven by research, informed by feedback from people with disability and carers and framed in an environment of renewed co-operation between jurisdictions.

Work will also commence on addressing the critical issue of workforce shortages facing the disability services sector across the country and Ministers also agreed that funding inequities raised by Western Australia should be addressed by Treasurers in the course of negotiating funding arrangements for the new COAG-endorsed Specific Purpose Payments.

Ministers reaffirmed their commitment to work to improve outcomes for children and adults with autism, and to continue important initiatives to provide young people with disabilities in residential aged care with more appropriate accommodation.

State and Territory Ministers will also work in partnership with the Australian Government on the development of a National Disability Strategy, which will deliver a whole-of-government, whole-of-life approach to disability planning, in consultation with people with disability, carers and other stakeholders in the disability sector. The Strategy will also seek input from groups within the disability community, such as carers, women, Indigenous Australians, migrants, and people in remote and regional Australia are also represented in policy planning.

Disability Ministers agreed that $51 million, in existing contracts with respite services, will be transferred from the Australian Government to the State and Territory Governments from 1 July 2008.
These agreements complement the existing $324 million that will be provided under the current CSTDA, which was recently extended in line with all other specific purpose payments, until 31 December 2008.

The Governments will continue to work collaboratively through the Community and Disability Services Ministers’ Conference to develop the new disability services agreement, which will be in place from 1 January 2009.

Today’s meeting made further progress on outcome measures for the disability services agreement. A further report will be provided to the next meeting of the Council of Australian Governments.
Further negotiations will continue on other aspects of the new agreement as part of the Commonwealth – State reform agenda.

Today’s successful agreements are yet another example of how Australians benefit when all governments work together.

Media Contact: Commonwealth
Minister Macklin – Jessica Walker 0430 166 633
Mr Shorten – Cath Sullivan 0448 025 042
State
Chair, Minister Gallagher – Angie Drake 0408 092 016

"At Home with Down Syndrome" - a new article in the The New Atlantis

The New Atalantis is an American journal on technology and society. The current issue (Spring 2008) includes an excellent, thoughtful article by assistant editor, Caitrin Nicol, "At Home with Down Syndrome", surveying a number of recent publications by and about families. She reaches back into history to introduce her essay with the story of an Italian renaissance painting, its painter and his patron, and brings it right up to date with Roadmap to Holland. You can read an advance online copy here.

Most of the works reviewed are available to be borrowed by members from the Down Syndrome NSW library

Sydney Film Festival 2008 (4 - 8 June): Accessible Cinema

The festival includes an Accessible Cinema program following its successful introduction last year. Accessible Cinema features films about people with various disabilities. For more details about the program and individual films, click here.

Bookings are available online, or through Ticketmaster on 136 100, or at the venues. Sydney Film Festival website: www.sydneyfilmfestival.org/

UK actor, Max Lewis, 15 has another movie role
You might have seen Max Lewis playing the role of Cate Blanchett's son in the 2006 movie Notes on a Scandal. He has won a second film role, in a thriller. Click here for an extract from his mother, Sandy Lewis's book, Living With Max, published in the UK newspaper, The Daily Mail yesterday. The book will be published in Britain on 29th May.

2008-2009 Federal Budget

Minister's Press Release, 13/05/2008: $822 Million to Support and Recognise Carers
Australia's carers are set to benefit from an $822 million package of measures to increase support and recognition of their vital economic and social role.The Government values their role and the contribution of carers who make enormous personal sacrifices through their selflessness and hard work. Click here for more information.

Budget Fact Sheets:

• Carers - Improved support
• Carer Bonus
• Ageing Carers - additional support
• Special Olympics Australia - increased funding

Click here for the Carers Australia Federal Budget Analysis posted to the Carers NSW website.
Click here for Australian Council for Social Services Federal Budget Analysis

Link to Video On Demand: "In My Shoes"

Following tonight's broadcast of this confronting program under the Four Corners banner,"In My Shoes" is available online, including extended interviews with the carers who spoke with such clear sighted passion in the broadcast. There is a link to the 2005 program "The Hidden Army", to which much of the current carer action can apparently be traced; and an email forum all on this page:
http://www.abc.net.au/4corners/content/2008/20080512_carers/interviews.htm

"In My Shoes" - Four Corners ABC TV, Monday 12th May - Carers of people with disabilities

On Monday 12 May ABC TV’s Four Corners program, "In My Shoes" will focus on carers of people with disabilities. It will cover issues such as:

• disability funding
• lack of (appropriate) respite and supported accommodation
• rise of 'carer advocacy' in recent years

There will be an online discussion following the program where you can log on and have your say about the issues raised http://www.abc.net.au/4corners

See a written preview on the Four Corners website: In My Shoes, Four Corners 8.30 pm Monday 12 May, on ABC1.

This program will be repeated about 11.35 pm Tuesday 13 May; also on ABC2 at 8 am Tuesday.

Relaxation of eligibility for Carer Payment following review

Some welcome news for those carers of children and adults with complex and multiple disabilities, who have not previously met the very stringent criteria for the means-tested Carer Payment
Extract from an article by Andrew Probyn and Phillip CooreyMay 10, 2008, published by the Sydney Morning Herald, Saturday 10th May, 2008:

Sources say that from July 1 about 20,000 extra families will receive relief of
between $560 and $900 a fortnight after the Rudd Government agreed to relax the eligibility criteria for the controversial Carer Payment (Child).

The new criteria are understood to be based on how much care the child requires, rather than the existing set of medical assessments used to classify a child as profoundly disabled.

One source said the existing criteria were so ridiculous that if a child were deaf, blind, and unable to use his legs or hands, he would still not be classified as profoundly disabled because his condition does not meet three of the required medical conditions on the medical report.

As of June last year, only 3750 parents - 3 per cent of all carer payment recipients - were receiving the benefit, which was designed to provide income support to those who had little or no opportunity to work because of the demands of caring.

The Herald understands extending the benefit will cost the budget tens of millions of dollars extra but will be popularly received because parents of the disabled have been crying for help for years. Those newly eligible will also receive the Carer Allowance (Child), a supplementary fortnightly payment of
$98.50.

The budget could also extend the Carer Payment (Child) to those who provide short-term care of between three and six months. This follows a review of the payment instituted in March last year by the Howard government. Headed by the former senior public servant Tony Blunn, the review was inundated with more than 4000 carers and their representative groups, begging for reform of a system they said failed to meet their needs.

The article can be read in full here - the first part is about changes to the Medicare surcharge threshold.

Julie Cromer retires as our Librarian

Julie Cromer retired on 10th April, after 4 years as our Librarian, and is enjoying a month’s sojourn in Italy , before settling into life as a new grandparent from early in June.

However, Julie’s involvement with Down Syndrome NSW and people with disabilities, particularly in the Eastern Suburbs goes back much further than four years. She has been an active member of Down Syndrome NSW since its establishment in 1980 and has played many active roles as a family member and committee member.

Her daughter Ruth is now in her mid-30s, making the Cromers a pioneering family in raising her at home with her brother, attending local schools and becoming an active member of both the family and her local community. When there were no appropriate support services, Julie has often been actively involved in establishing them.

She brought the same energy to professionalism to nurturing our collection of books, journals and videos into a specialist library, appropriately housed, maintained and managed. Her promotion of the library lending has seen the number of loans grow every year.

Because of her experience as Ruth’s mother, her great good sense, and her excellent contacts she has often been a valued mentor to staff and to other families.

Julie loved the idea of the American action figure, Nancy Pearl, Action Librarian and used a combination of firmness and humour to keep borrowers (both members and staff) in line, and the library items circulating. She has been fearless in searching out the resources we need to have on hand, developing a collection which is one of the organisation’s most treasured assets.

You will still find her here from time to time, as she will do some relieving work, and we have a plan or two for her continued active involvement as a DS NSW member. She said at her farewell afternoon tea that she didn’t feel would ever really fully “retire” from DS NSW as the organisation has been like another family, and her interest in people with Down syndrome will naturally continue.

We will miss her greatly, but of course we wish her well in her new role as a granny, and in retirement. And we can only try to thank her for the quality of the work she has done here – it is inestimable.

Kathi Beck has joined the staff as our new Librarian. Kathi is a qualified librarian with experience in small libraries, and she is a mother of three, including Amy, 7, who has Down syndrome. Kathi will work in the library at 2 Harold Street North Parramatta for 2 days each week, one of which will be Thursday. You can reach her on 9683 4333 or library@dsansw.org.au

Landmark United Nations Convention On Rights Of Persons With Disabilities

The United Nations Convention on the Rights of Persons with Disabilities entered into force on 3 May 2008, marking a new era in efforts to protect those rights.

The Convention, the first new human rights treaty of the twenty-first century, has been signed by 127 countries since 30 March 2007, and ratified by 24.

United Nations Secretary-General has called the Convention a powerful tool to eradicate the obstacles faced by persons with disabilities. “It is a historic moment in our quest for realization of the universal human rights for all persons, creating a fully inclusive society for all.”The Convention itself does not create any new rights. Rather, it aims to ensure that the benefits of existing rights are fully extended and guaranteed to the world’s estimated 650 million people with disabilities.

“It had been argued that persons with disabilities were covered by existing human rights treaties, but the reality was very different,” says Akiko Ito, Chief of the Secretariat of the Convention on the Rights of Persons with Disabilities and the UN Focal Point on Disability. “Persons with disabilities have routinely suffered discrimination in the job market, in schools and in receiving public services. This Convention will make sure that these people will no longer be ignored.”

By ratifying the Convention, States commit themselves to enact laws and other measures to improve disability rights, and also abolish legislation, customs and practices that discriminate against persons with disabilities.

The Convention, among the fastest ever negotiated at the United Nations and one of the fastest to enter into force, has the strong support of United Nations Member States, as well as advocacy by the global disability movement, which was instrumental in drafting the treaty.

Australia signed the convention on 30th March 2007.

For further information about the Convention and the work of the UN Department of Economic and Social Affairs, Division for Social Policy and Development, go to: www.un.org/disabilities A world map indicating the countries that have signed and/or ratified the Convention can be found at: www.un.org/disabilities/documents/maps/enablemap2May08.jpg

Information in Vietnamese, Arabic and Chinese

Most of us who have sons and daughters diagnosed with Down syndrome have felt overwhelmed at times, especially in the early days, by what that very big label means for our little baby, and for our family, and we have sometimes struggled with finding the information we want. How much harder would that be if you had to do it in a second language, or had no access to any information in a language you could understand? And possibly with little family support if they are living on the other side of the world, or isolated by cultural values or differences?

New South Wales is a culturally diverse community, home to families from many different language and cultural backgrounds. Those families have babies and some of those babies will be born with Down syndrome.

Down Syndrome NSW is working with diverse communities to locate and produce information resources to help provide the information that is available to English speakers to other groups. It is time-consuming and exacting work, as literal translations of English material is not always appropriate, and there is little or none available elsewhere in some languages - but we are working with some wonderful groups, to good effect. We are currently concentrating on Vietnamese, Arabic and Chinese because they are the most frequently needed languages. We have sent the Vietnamese resources to fasmilies around the world -including one package to the family of a baby born to Vietnamese parents in Norway, via a contact in England.

You will find more about what we have achieved so far, and links to the information resources here.

The most recent addition is an Arabic translation of Our son has Down syndrome - an article written by the Australian mother of a young man, as he is about to move from school into the next phase of growing up. The English original is here for the English original.

This week we are holding a seminar on health concerns for children with Down syndrome with a group of Arabic-speaking families, working with an English-speaking presenter and an Arabic interpreter. More than 20 families have signed up so far. We have a long way to go, and a lot to learn, but we know from our work with the Vietnamese parents support group that it is worth doing, and worth working directly with the families.

Three great smiles

We don't subscribe to the stereotype of people who have Down syndrome as "always happy and loving" - it denies that they can and will experience the full range of human emotional experience. Just try saying it to the parents of a toddler throwing a whopping tantrum or of a teenager who can slam doors with the best of them, or an adult bereft at the end of a relationship. And it doesn't sit well with that other old chestnut about "the stubborn streak" (we'll deal with that another time)!

But there's nothing like a fabulous smile, or an uncontrollable giggle to lift your day - and these are three of the best we've seen lately:

We hope they make you smile too. Wouldn't you love to know what prompted them?

Online Book Club - and other book news

Are you a reader?

Dave Hingsburger, over on Chewing the Fat is starting an online book club Have a look at his blog entry for 21st April to see how it will work .

The first book chosen is Mary Doria Russell's A Thread of Grace, which Dave's blog can tell you more about, and why it might be of interest to us. It is available in bookshops in Sydney such as Dymocks, Angus and Robertsons and Borders, although two of our frequent library users report that it is not in their large local libraries.

We have also received this week two copies of Jennifer Graf Groneberg's new book Roadmap to Holland - see Jennifer's blog Pinwheels.



A local new release is Ari Galper's book, Lessons from Toby - 52 Life Lessons. You can read more about it and order it from Ari's website.

DS NSW members can request a loan of either of these last two by emailing libraryloans@dsansw.org.au

Annotated lists of our complete library collection of 1800 items can be viewed here.

T 4321 at All Hallows Five Dock

March just wasn't long enough to accommodate all of the T4321 events that people wanted to hold to celebrate World Down Syndrome Day/Month 2008 (more than 50 were registered), so we spilled over into April as well ......

All Hallows Church at Five Dock hosted morning tea on Sunday 6th April in the church hall, where everyone looked right at home.

You can slo view these photos and those from other events through our Galleries page

The dreaded haircut - could this be your family?

Lynn Johnston's gentle comic strip of everyday family life with the Pattersons, For Better or For Worse (R), takes a wry look at episodes of family life that will often hit right home for parents of children with disabilities, like this one from last Sunday (6th April). Could this have been your family at some time - or right now?

In October 2004, Lynn Johnston introduced a new character, Shannon Lake, a teenage girl with an intellectual disability into her cast. Shannon was developed with the help of her niece, Stephanie who has special needs. Together they are a powerful advocacy team in their own community and to the wider world. Spend some time looking through Shannon's own website for a wealth of material, and for the strips in which Shannon has featured.

These two strips from 2004 introduced Shannon in 2004

• 23rd October 2004
• 27th October 2004

There's some real food for thought in these comic strips, and the background material that could make very effective teaching and learning resources and ideas, about developing a sense of self, self esteem, and dealing with teasing and bullying. And perhaps all the better for not being in a textbook!

Special Commission of Inquiry into Child Protection in NSW - hearing on disability

The Special Commission of Inquiry into Child Protection in NSW, being conducted by Justice James Wood, heard submissions on children with disabilities yesterday, Friday 11th April 2008.

Families of children needing extremely high levels of support, because of complex and multiple disabilities spoke about the drastic actions they have been forced to take when the disability service "system" has been unable to support them to raise the child at home.

Most families with sons and daughters who have Down syndrome do find the supports and services they need, and are able to develop skills and resilience sufficient to meet the child's needs relatively comfortably within their own families. But some children and adults with Down syndrome do have more complex needs, and can have multiple disabilities and/or health complications that push their families' limits of endurance beyond reason, similarly to those families' whose stories have been told in the Inquiry.

The NSW Department of Ageing, Disability and Home Care policy is that all children under 12 should be raised in a family setting, but it apparently still has no workable solution in place for situations when that is not possible. One family's story has been highlighted in the media, and was accepted by the Inquiry as a case study.

A parent-observer at the inquiry on Friday reports that " ....senior DADHC officers said there were a number of models of accommodation and yet could not name any other than saying every effort was made for children under 12 for the child to remain in the family home with in-home support. When pressed by the Commissioner and his assistant as to what was the alternative if it was impossible or inappropriate for the child with disability to remain in the family home, or with a foster family, the DADHC officers really had no satisfactory answer"

Media reports on the Inquiry's disability hearings:

How policy forced a family to desert their child (SMH 10/11/08)

Disabled Kids not getting proper care (SMH 11/04/08)

Lack of services for disabled children tearing families apart (SMH 11/04/08)

Parents 'forced to abandon disabled children' (ABC News, 11/04/08)

Two heart-felt letters to the editor of the Sydney Morning Herald, from family members responding to the reports are published under the heading The ability to care depends on support, in today's edition.

A transcript of the hearings on disability (11/4/08) will be available on the website of the Commission of Inquiry's website by Monday 14/04/2008 or Tuesday 15/4/08
The Department of Community Services submission on Health and Disability is linked under 10/04/2008, the NSW Ombudsman Report 2004 - DADHC - The need to improve services for Children, Young People and their Families (which is critical of DADHC's inability to deliver the services its policy requires) is posted under 7th April 2008 on the same page.

Melissa Riggio 1988 - 2008

Patricia Bauer has posted a moving tribute on the life of Melissa Riggio, 20 who sadly died earlier this week, after being ill with leukaemia. Melissa was a remarkable young woman in her own right, and had a major impact on the publishing industry in the USA. Her father, Steve Riggio is the CEO of Barnes and Noble,(a major US book seller) and after Melissa's birth he worked to include many more titles on disability in his stores, with a flow-on to the wider market. Read Patricia's tribute here.

Melissa's story has also been told by National Geographic Kids, and through her own web page, Melissa

Like many around the world, our thoughts are with her family.

Visual Arts - people with Down syndrome as subject and artist

People with Down syndrome have been participating in art since people began making art. Two young children with Down syndrome are currently the subject of very different pieces on exhibition in Sydney:

Local Eyes is an exhibition of photographs with a difference, created by United Way Sydney. "It's a chance for ... budding photographers to present their unique perspective of Sydney, and for United way supporters to better understandhow others who face significant challenges see their world." Click on "View and Vote" to see thumbnails of all of the photos - at the lower right is Persia Burrows' photo of herself and her brother Tyler, who has Down syndrome. Click on the thumbnail for a enlargement, and the story of how the photo came about. You can vote for it too.

Daniela Mousa's Year 12 artwork confronting attitudes to people with disability will be on exhibition from 4 - 24 April in the Art Expressed show at Ku-ring-gai Arts Centre in Sydney's north. She has incorporated images of Angela, who has Down syndrome into an installation questioning judgements and behaviour. Click here for an article and photograph from the Northside Courier.

Some other interesting visual arts links:

• Down Syndrome NSW web page on visual arts


• Accessible Arts is the place to keep up with arts and disability news in NSW


• Gallery ARTES showcasing the work of artists with disabilities, is a project of Studio ARTES Northside Inc. - a community-based, not-for-profit organisation in Hornsby (NSW)


• Creative Growth is the Californian art studio that fostered the acclaimed work of the late Judith Scott

Dragon, DGC, Studio ARTES 2006

Picnicking at Coffs Harbour

Our Coffs Harbour families rarely miss an opportunity to get together and share in whatever events or celebrations are planned. World Down Syndrome Day/Month 2008 was no exception.

Sunday 30th March was a beautiful early autumn day, and the family picnic was an overwhelming success with about 70 people, including families and grandparents from as far away as Brunswick Heads, Alstonville, Port Macquarie and Armidale.

From discussions during the day, parents of primary school aged children decided to organise a friendship club, with the children meeting on a monthly basis. - a good outcome from a good day.

Wollongong rocks for Down syndrome: Illawarra Black Tie Ball

We are still catching up with all of the wonderful events celebrating World Down Syndrome Day/Month. Tracy Barker again galvanised the Illawarra community for an elegant night of fun and fine dining on 28th March. highlighted by the ability of the young people with Down syndrome to absolutely milk the moment for every drop of enjoyment, and take the rest of along for the ride. We did hear that the microphone got quite a workout when they were invited to say a few words if they would like to - it wasn't necessary to ask twice!

Tracy's energy, caring for her family including two beautiful and lively little girls, working, and taking on the organisation of a number of events each year (a T4321 morning tea, the Black Tie Dinner and the Illawarra Buddy Walk fior a start!) is phenomenal, and very much appreciated. Final fundraising figures are not yet in, but around $10,000 is expected from the dinner - again, very much appreciated.

As always, the less tangible outcomes of the night will be absolutely priceless!

Thank you Tracy, your family and friends, and to everyone who supported the event and took part.

For more photos, click here for the gallery .

On a Wing and a Prayer - what a night !!

On a Wing and a Prayer was a major fundraising event held last night in Sydney, that was much more than that. Attended by over 600, it achieved its fundraising goals, for which we are more grateful than words can say, but the insight it gave those attending who previously knew little about Down syndrome, or had never actually met anyone with Down syndrome was priceless! An impressive line-up of sporting, media and other celebrities brought together by our patron Craig Wing, entertained the crowd, while members and staff told them about their families and our work.

Some were moved to tears as a young mother talked about her little one with Down syndrome and how she's influenced her family; shared her pride as Ruth Cromer spoke about living with Down syndrome, the challenges she has faced, and how she's been supported; and generally were amazed at the ability of people with Down syndrome of all ages to have fun!

The audience was asked to buy items at auction, raffle tickets, and to simply donate to help fund our efforts in supporting families across NSW - and they did, very generously. A very special event.

You'll recognise many of the faces in these first photos if you are in Australia, and these in the first of several photo galleries to come as we gather them in.

Our thanks to everyone involved - more details will be posted to our website, along with more photos.

Additional photos and a nice report are also on South Sydney Rabbitoh's Club News

Quote of the night: “My sister Kirsty is here tonight and she has Down syndrome. She is a massive Rabbitohs fan but she is disappointed that we wear red and green, and not pink and sparkly!" Craig Wing. We so get that!

A little help from friends ....

South Sydney 1st grade NRL stars Ben Rogers , Shannon Heggarty, Michael Greenfield and Issac Luke helped out teammate Craig Wing in his mission to raise funds and awareness for Down Syndrome NSW. Craig was due to appear at a Market Day Fundraiser at Wattle Grove Community Centre on Sunday 16th March, before a major injury in the first round game on 15th ruled him out of the event. He asked for help, and he got it - immediately. The day was a huge success, and Melissa Cotterill, who organised the day, was thrilled.

At the event, the four boys were greeted with huge cheers from the 300 plus crowd and spent the afternoon signing autographs, taking pictures, passing the footy around. Read a full account of these fine young men's commitment to their teammate and to the community here, on the Rugby League One Community website.

Network Ten took some footage for a news report later in the week to mark World Down Syndrome Day, highlighting the joys and challenges of life with Down syndrome in 2008.

Congratulations Melissa, and all of your team!

Click here for the Market Day photo gallery

Family Fun Day in Newcastle - the celebrations continue

The recently established Newcastle Down Syndrome Support Group held a Family Fun Day at Speers Point ark on 15 March 2008 to celebrate World Down Syndrome Day.
Families came from as far south as Erina and north as Tea Gardens. It was wonderful to meet new families and make new friends.
The children had lots of fun having their faces painted, playing games including an egg & spoon race and tug of war - though I'm pretty sure there were some 'grown ups' who got involved in this game too! The Police cars were a big hit - with the kids getting to clamber around them and use the siren as much as they liked???? The cardboard police car money boxes were also a big hit and kept the grown ups busy figuring out how to put them together.





We would like to thank the following organisations for their support - NSW Police - Lake Macquarie Command, Crowne Plaza - Hunter Valley, Oaks Pacific Blue Resort - Salamander Bay, Moonshadow Cruises, The Good Guys, Rosie's School of Rock, Brian Kelly Holden, Coles - Toronto, Out of Town 4WD, Baker's Delight - Edgeworth, Joe's Meat Market and Reid's Quality Meats.
Our special thanks to Helen Gadd, at the University of Newcastle Early Intervention Centre for her ongoing assistance in creating community awareness of the Newcastle group and her wonderful face painting! The kids loved it!

We look forward to holding a further great event next year to create another wonderful experience for family and friends to gather together. Click here to see all the photos in the gallery.

Easter meets World Down Syndrome Day in the Blue Mountains

Kathi and Rob organised an Easter Egg Hunt for the kids, on World Down Syndrome Day since this year it coincided with an unusually early Easter. And they don't let a little moisture stop anything too much in the Mountains:

Despite the fact that it poured with rain and the traffic was so congested that a few guests had to turn around and not come, we went ahead with the egg hunt and afternoon tea. The kids ran around looking for eggs in the rain and wet grass but didn't seem to mind and I think they found all the eggs??? About 40 people came and we raised $834.50 through a raffle and donations.
I didn't do everything that I thought about doing originally but it was nice to mark World Down Syndrome day in some way and hopefully everyone had a good enough time.

Thank you for braving the showers, kids and for fundraising while having fun - a great result for everyone.

The Newcastle Support Group are sending photos from their Fun Day too - hope to have them up in a few days!

Did you see the crowd at Melissa's Market Day on the Channel Ten News last week? People with Down Syndrome are everywhere! We knew that.

World Down Syndrome Day: 21st March (3/21)

Senator Sue Boyce wrote for the Brisbane Courier Mail today, on World Down Syndrome Day (21st March) ......

There seem to be dozens of "days" in every week these days, marking everything from arthritis to Zen Buddhism. But, for purely selfish reasons, one that I hope will cut through is World Down Syndrome Day, celebrated tomorrow.

The date, the 21st of the third, was chosen to reflect the fact that Down syndrome (Trisomy 21) is caused by a triplication of chromosome 21.

This year's WDSD is only the third. It has taken a long time for the global community formed around Down syndrome to come together.

Click here to read the whole article online.

In the US, World Down Syndrome Day was introduced by actor Chris Bourke, when he rang the NASDAQ closing bell last Monday, 17th March. Click here for the story and photos.

Photos and stories from local events will be posted as they arrive. You can send them to marketing@dsansw.org.au - please tell us a bit about the event and who was there.

A few weeks into the new school year ..... how's it going?

The teachers are getting to know their students, and we hope the students are settling in too, especially those who have started school for the first time, changed to a new school or started high school - all major transitions that take time, thought and effort.

Down Syndrome NSW can assist the transition of students with Down syndrome into new educational environments, and progress through school in several ways:

- through the Learning, Education and Schooling pages on our website, we have provided links to the very best sources of information and resources available to assist teachers to facilitate learning for their students

- schools are welcome to take out membership of DS NSW, so that all of their staff gain access to our library; receive our regular Updates and Newsletter; are entitled to members' discounts for DS NSW training and education events

- we schedule several half-day and one-day workshops around NSW each year, some of them designed specifically for classroom teachers and school personnel. Over the next few weeks, we are holding workshops for teachers in Armidale, Warners Bay, Wollongong and Broken Hill.

- a "starting School" seminar for parents of children enrolling in primary school over the next couple of years is scheduled for 14th June.

- our information and support staff are available to assist with particular concerns by phone on 02 9683 4333 and email at support@dsansw.org.au

- by telling you about new discoveries, ideas, resources and events as they become available

- by helping you to find the additional services or programs that you might need from time to time

It's easy to underestimate, as a parent ,just how much you know about your child in particular, and about Down syndrome in general, even by the time they first start school. By then we've seen several years of development and learning, have closely observed our children in different environments, and made carefully considered decisions about how and where they will go to school.

Most teachers have not taught many students with Down syndrome, and some will never have encountered a child with Down syndrome at all. So it is important to be open and articulate about what your expectations are. "What I want my child's teacher to know" , an "action sheet" from the PACER Centre in MInnesota might be a real help in letting your child's teacher know what you hope for, and how your input can help your child and his teacher to have the best school experience.

Responses to publication of UK antioxidant trial report

Dr Len Leshin has posted his commentary on the clinical trial of "Supplementation with antioxidants and folinic acid for children with Down's syndrome" mentioned in this blog on 23rd February, on his highly respected website, Down Syndrome: Health Issues:
www.ds-health.com/abst/a0803.htm

Science Daily has published an article about the trial :
www.sciencedaily.com/releases/2008/02/080223123616.htm

Several responses to the antioxidant trial have been published in the BMJ online in Rapid Responses:
www.bmj.com/cgi/eletters/bmj.39465.544028.AEv2#191091

Start of the NSW footy season and World DS Month ......

When your Patron plays for the South Sydney Rabbitohs, you sometimes get to go to special events in rugby league.



That happened yesterday for a number of young people with Down syndrome who were invited to the 2008 Charity Shield by DS NSW Patron, Craig Wing, to mark the kick-off for the new season. It turned into a party (of course), nicely topped up with a match-winning try scored by .... Craig Wing!

Everyone had a great time, none more than this fun loving group of league fans - there might even be a few Souths converts.

March 1 was also the beginning of World Down Syndrome Month (March) - we usually mark World Down Syndrome Day on 21st March (21/3 symbolising the three copies of chromosome 21 that gives rise to the condition we know as Down syndrome), but this year, since 21st March is Good Friday, we have spread the celebration s out over the whole month.

Email t4321@dsansw.org.au, or call Steve or Priscilla on 02 9683 1900 or 0424 044 930 to send your "World Down Syndrome Month" message for our commemoration page.

British antioxidant trial published: no significant effects

The long awaited results of a UK clinical trial of oral antioxidant and folinic acid supplements for young children with Down syndrome were published by the British Medical Journal on 21st February 2008.

The study used the Griffiths developmental quotient, an adapted MacArthur communicative development inventory, and biochemical markers to assess changes over 18 months, in a randomised clinical trial with 156 infants with Down syndrome participating.

No significant differences were found between the supplement and no supplement groups. The researchers concluded that the study "provides no evidence to support the use of antioxidant or folinic acid supplements in children with Down's syndrome."

The full text of the report is available to download from the BMJ website, and as a .pdf file An extract from a BMJ editorial in the same issue is available here.

We expect much more commentary on this study, and will post links here and on the DS NSW website, on the Research pages.

We said the last six months would be busy .....

... and they were. But it's a new year, and this blog will be updated regularly. Here's a quick catch up:

We have a lot new things to tell you about - our favourite new discovery is The Journey Ahead: Consider the Opportunities, an excellent video for new and expectant parents, produced by the Down syndrome Association of Greater Cincinnati, and made available online here (scroll down the page a bit), Such generosity is truly in the spirit of the founding families who first established Down Syndrome Associations from about thirty years ago: alive and well, and enhanced by technology – and still needed, all over the world. It’s a new generation of support, from a new generation of parents.

Gifts is proving to be a very popular book with our new families - we've ordered 20 new copies for our library so that we should always have one available. Woodbine House is the publisher - email us if you would like to borrow it, or for a list of local suppliers if you want to buy a copy.
Our New Parent pages have been tweaked and tidied up, with a new set of links added for those with a prenatal diagnosis. Five weeks into 2008, seven families with newborns had been referred to the Parent Support Team, so they have hit the ground running. This week the Parent Support Team is in Lismore on the beautiful Far North Coast meeting with families of young children and the professionals that provide services to them, providing updates about Down syndrome.

Two new blogs have been added to our list of those we read: IDEAS (a NSW disability information service) and Pinwheels (by the mother of twins, one of whom has Down syndrome). Click on the titles in the list at right to check them out.

On the social scene, Tracy Barker is again organising the popular Illawarra Black Tie Dinner for World Down Syndrome Month, on 28th March. And our Patron, Craig Wing, is hosting a major fundraiser, On a Wing and a Prayer in Sydney on 2nd April, with proceeds coming to Down Syndrome NSW.

What do we do all day?

There is always something happening at Down Syndrome NSW - it is a much livelier place than you might imagine! The second half of 2007 is shaping up as a busy few months for us. Here's a run-down on the events planned so far:

• An Evening with Prof Sue Buckley (for parents of older adolescents and adults with Down syndrome), on Wednesday 8th August
• Seminar for teachers, and other professionals with Prof Sue Buckley and Ms Julie Hughes, Friday 10th August
• Seminar for parents,with Prof Sue Buckley and Ms Julie Hughes, Saturday 11th August
• Annual General Meeting - Saturday 11th August
• Q and A workshop for Vietnamese speaking parents, Monday 20th August
• Morning Tea for Arabic speaking parents, Monday 20th August (contact the Parent Support Team on 02 963 4333 for details)
• New Babies Day, Saturday 15 September (contact the Parent Support Team on 02 963 4333 for details)
• Down Syndrome Awareness Week 2007, 13 - 21st October
• Open Day at Cumberland Retreat - Saturday 13th October (details to be confirmed)
• Buddy Walk 2007 - Sunday 21st October
• Families' Weekend 2007 and Up Club Camp 2007 at Collaroy Centre - 9th - 11th November
• Workshops for families and professionals in Wagga Wagga - 22nd-24th November (details to be confirmed)

All of this happens in addition to the day-to-day activities such as supporting families of newborns with visits, phone calls, resources and referrals (we have had nearly forty notifications of newborns up to the middle of July); taking inquiries by phone and email; visits by families and professionals to use the library and talk with staff; managing the library; publishing Updates and Newsletters and our Calendar; keeping the website up-to-date; fundraising and marketing (without which we cannot do our work); reporting to funding bodies; and managing the organisation. And there are meetings, and reading to keep up with the wider disabiiity sector, government and community happenings.

And then there's the UP! Club and the Up, Up and Away Project, both setting a brisk pace that leaves the rest us of breathless.

That's why this Blog doesn't get written more often ......

What's Under Your Hat?

"What's Under Your Hat" came to notice when it recently screened in Sydney as part of the Spanish film festival - not somewhere we would usually look for a film about a person with Down syndrome, especially not an American. We are indebted to Dean Watson, or very own arts and culture monitor, who brought it to our attention.



This very powerful film is one of three we have discovered about Judith Scott, who became renowned as a sculptor, after an inauspicious start to life, and many years of living in a State institution with her needs and abilities unrecognised and unsupported. Judith's great good fortune was to be born a twin - her sister Joyce was able to eventually reconnect with her, rescue her from the institution, and introduce her to the Creative Growth Art Centre, in Oakland, California, where her artistic expression flourished.
Lola Barrera (director) and Julio Medem (producer) have given us a film that is more than documentary - it is engaging, confronting, uplifting, heartbreaking, hopeful, deeply respectful of the art that is its focus, and at times very funny.
DS NSW will try to obtain a DVD copy for our library. If you are in Brisbane, you still have a chance to see it when the Spanish Film Festival is presented there next week. The commentary is in English, with Spanish sub-titles. Don't miss it!