Rudely Interrupted at the UN .....

Melbourne band Rudely Interrupted was invited by the United Nations to perform in the Dag Hammarskjold Auditorium on the 3rd of December 2008 to mark International Day for People with Disabilities.

Rudely Interrupted is one of Australia’s truly unique indie rock acts. 5 out of the 6 members share a range of both physical and intellectual disabilities (Blindness, Deafness, Aspergers, Autism and Down syndrome) but most importantly, a common interest in self expression through music. Their achievements, both personal and professional to date are extraordinary.

Post performance press:

• UN's photo of the IDPWD performance
• 7.30 Report (ABC TV), 26th December 2008: transcript of report and link to video
• marie-claire story, video and link to photos of the performance
• Review of UK performance
• Rudely Interrupted’s website

Coming Down The Mountain screening on ABC2 Friday 2nd January

The British movie Coming Down the Mountain is scheduled to screen on ABC2 on Friday 2nd January, at 8.30 pm. From the program guide:

David Philips (Nicholas Hoult) is a typical teenager with a colourful interior life, who has to share his room and much of his daily space with his 16-year-old brother Ben (Tommy Jessop) who has Down Syndrome.

This gritty telemovie, written by the author of The Curious Incident of the Dog in the Night, tracks the actions of this frustrated and angry teen pushed to the edge by his whirl of emotions.

From the BBC's webpage for the movie:

Mark Haddon says, "I began writing Coming Down the Mountain with the idea of creating a meaty role for a young actor with Down’s syndrome. It ended up as a film about the stuff of every teenager's life – love, sex, anxiety, ice-cream, parties and nipple-rings."

MemorableTV.com provides some further information.

Holidays

The Down Syndrome NSW Office is closed from 22nd December 2008, reopening on Monday 5th January 2009.

Calls from families of newborns will be responded to during that period, if an answering machine message is left on 02 9683 4333.

Please refer to our website for information about people with Down syndrome, and the activities of Down Syndrome NSW.

The committee and staff of Down Syndrome NSW wish our members, friends and colleagues a happy holiday season.

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In the spirit of January in Australia, the blog might, or might not, be updated during the holidays ...... but we'll definitely be back by 5th January.

A story from rural Vietnam ....

This news story about a group of nuns transporting children with Down syndrome in rural Vietnam to and from school by motorbike, tells of very different opportunities for these families, from those that we enjoy here in Australia, particularly in urban areas.

Vietnamese families with children with disabilities are relatively disadvantaged in Australia, too, as there is little information available in Vietnamese, few bilingual workers with expertise in Down syndrome, and it can be difficult for them to obtain services at optimum levels. Cultural sensitivities also need to be attended to.

Down Syndrome NSW has some funding that enables us to produce a small portfolio of translations, and to run annual workshops for Vietnamese speaking families, with the assistance of an interpreter. (A similar program is funded for Arabic speaking families, and is being developed for Chinese speaking families). Translations produced so far can be accessed from our website, here; and we recommend that Vietnamese speaking families contact the Vietnamese Support Group for Parents of Disabled Children in NSW, contact details here, in both Vietnamese and English.

Lucy Dumitrescu: sportswoman

Lucy Dumitrescu is a very fit young woman, who lives in Sydney. She trains regularly and hard in a number of sports, including swimming, running, cycling, and indoor soccer.

In October she competed in the women's Triathlon Pink in Sydney in support of the National Breast Cancer Foundation. Lucy powered through the swim but had a little hiccup in the cycling, as the chain came off her bike. It turned into an asset as the bike-technician who came to help get the chain back on then drove along behind her as they do in the Tour de France, so she felt very important and flattered! Her bike was adapted for her by Technical Aid to the Disabled (link to TAD). Lucy said it was all good fun, and “Maybe we’ll go faster next year”. She will be back!

Lucy represented Australia as a member of the 20 strong Team Australia at the 4th International Down Syndrome Swimming Championships in Portugal, 29th November – 4th December 2008. Along with her team-mates, she was farewelled at Brisbane Airport by Olympian Jessica Schipper, the Patron of the Down Syndrome Down Under Swimming Organisation. (There's more to come about Team Australia's achievements.)

Lucy is a very active member of Special Olympics, Upper North Shore Region.

Library Thursdays: Children's books

It is important for people, especially children, to be able to identify with characters and situations in stories that they read or hear. It is also important to experience characters and situations that are different to ourselves and our situations. For both of these reasons, it is important that books include people with Down syndrome in their stories. In our library, we have a variety of children’s books which should be included in school and public library collections.

There are books for very young children, such as My Up & Down and All Around Book by Majorie Pitzer, ABC for You and Me and 123 for You and Me by Meg Girnis and Shirley Leamon Green which show children with Down syndrome posing to illustrate the concepts as any other child would.


For children who have just started reading or listening to short chapter books independently, there is a series by Sophie Smiley (Bobby, Charlton and theMountain, Man of the Match and Team Trouble) about a family of football fanatics who happens to include a boy with Down syndrome. Older children may enjoy a slightly wacky book, Night Riders by Mark Roberts, about 2 boys with Down syndrome who set off to save a dolphin and end up robbing a bank.

And for teenage siblings there is a book about a twin brother of a boy with Down syndrome A Small White Scar.by K.A. Nuzum.There are others which try to explain what is Down syndrome, and those are also good, but books that simply have characters who happen to have Down syndrome contribute to awareness and acceptance in a very useful way. to awareness and acceptance in a very useful way.

To borrow any of these books, email the library.

Canadian Disability Saving Plan implemented

This article from Canwest News describes the Canadian Registered Disability Savings Plan, implemented from 1st December, from the point of view of a woman with Down syndrome and her family.

The scheme, the first of its kind world-wide, was developed by Planned Lifetime Advocacy Networks, and is supported by contributions from the Canadian government, as well as family savings. It was launched on International Day of People with Disability (3rd December) in Vancouver, and has its own RDSP website.

It will have some benefits similar to the no-fault insurance proposal of the Disability Insurance Scheme group recently launched in Australia. The NDIS website has added a blog, and has a "Your Say" facility, where family members and others can add their comments on the "Biggest Issues" and "How my life could be changed by an NDIS".

Exceptional Parent magazine interviews John McGinley

Exceptional Parent magazine is a very well established publication from the US, addressing topics of interest to and about people with all kinds of disabilities, their families and professionals.

Max McGinley and his family are on the cover of the December 2008 issue. The cover story is an interview with John McGinley, father of Max who has Down syndrome, US patron of Buddy Walk, and actor (Dr Perry Cox, in the TV series SCRUBS): His Best Role Yet – John C. McGinley on Being a Dad. You might be required to complete a free registration to access the story

Also in the December 2008 issue of EP, and available online, is this story about 4 year old Rose McAulliffe teaching 100 high school students some sign language, and about Down syndrome, co-teaching with her mother: Rose's Life Lessons: Signed and Spoken.

• Exceptional Parent Magazine, December 2008: Contents

Extraordinary Welsh theatre

If you are travelling to the UK in the early months of 2009 (or indeed, if you live there) this play, Miss Brown to You at the Hijinx Theatre in South Wales might be of interest. It will be on tour in March and early April 2009. From the theatre's website:

....... Miss Brown to You is a new play by Alan Harris, set during World War II which follows the plight of Emily, a young woman with Down’s syndrome who is evacuated from the dangers of the city to a small Mid-Wales village to live with a fierce aunt she hardly knows. Here she has to come to terms with a new life full of unknown challenges, loneliness and prejudice.

A strong bond develops with her cousin as they learn to share ideas through music and she draws comfort from the wild beauty of the surrounding landscape. Here she meets Stanley, a desperate and isolated young man who is sleeping rough. Both are outsiders and a secret friendship grows between them. Meanwhile her aunt has her own demons to fight and stark realisations to confront as a web of lies starts to unravel.

While you are on the website, learning more about Hijinx Theatre's work with people with learning disabilities, check the links to the production earlier this year, of Full Circle, a play based on the story of Andrew Williams:

..... Full Circle is inspired by the true story of Andrew Williams, a man with Down's Syndrome who climbed Everest in 1996. With dogged determination, Andrew pursued his dreams and, through the support of his circle of friends, fulfilled the seemingly impossible. Full Circle by Glenys Evans, was originally toured by Hijinx in 2003 to critical acclaim. Hijinx are thrilled to be able to tour a new production in 2008 with the part of Andy being taken by Gareth Clark. Having been a member of Odyssey Theatre for many years, for Gareth too, this is a dream come true. An inspirational story for all.

Click here for a an interview with the playwright Glenys Wright, about the writing of Full Circle.

The future in our hands

Kirsten Dean is a former journalist, and is currently the President of Down Syndrome Victoria. Her response, to last Sunday's article about the need for a national strategy for prenatal screening for Down syndrome is published today in The Sunday Age, under the headline "The future in our hands". Some extracts:
Some obstetricians are calling for more extensive prenatal screening for Down syndrome, but those who call for screening can't have it both ways. They can't argue that greater screening enables greater choice while at the same time promoting halving the birth rate through abortion. That's not individual choice, that's eugenics.

......

An ultrasound is not a photo opportunity — it is a medical test for foetal abnormality. Any referral should be accompanied by a detailed explanation of the purpose of testing, what the tests will involve and the possible consequences if a problem is detected. And women must understand that they have a choice. We do not believe this is always the case. Prenatal testing must always be voluntary. Moves towards routine screening must never remove the obligation to obtain informed consent.

.....

We believe the barriers that limit the opportunities of people with Down syndrome are constructions of society's making. As such, they can be dismantled. We should be working to change the world, not eliminate people with Down syndrome from it.

Read the full text here.

Down Syndrome NSW has very similar experience of prenatal enquiries.

• The future in our hands, Kirsten Deane, The Age, (Melbourne), December 14, 2008

The Sunday Age also published this letter from Damian O'Donnell:

I hope I never have to explain to my 11-year-old daughter, born with Down syndrome, the meaning of "More Down testing would 'halve' births" (Sunday Age, 7/12). What would she think?

The issue here is not testing with a view to termination, but education with a view to understanding. Governments could play a big role here.

Let's understand that people with Down syndrome aren't "trisomy 21s", they're not "Downies", and they are certainly not a burden on society. They are people with as much to contribute as anyone.

In Sydney today, the Sun-Herald did not publish this response from Down Syndrome NSW:

Louise Hill's article about a national strategy for prenatal testing for Down syndrome set out some salient points about access to testing, and reported the view of much of the medical profession, but failed to address the issues of greatest concern to those most affected by any prenatal testing.

Prospective parents need much better information than most of them currently get about the nature of the tests, what they can and cannot predict, all of the options they have, the nature of the condition being tested for (in this case, Down syndrome) and the potential consequences of whatever decisions they might make.

Down Syndrome NSW does not seek to stop prenatal testing, nor to instruct individual families on what decision they should make, but there are significant issues arising from our access to such technology that go largely ignored in the belief that the technology itself is a "solution" to a "problem".

Angela Blakston, writing in The Age earlier this week (12th December) said:"...... I feel saddened that, on one hand, we could see the unfairness and prejudice of the Moellers' situation. On the other, we send a message through the push for uniform, national screening that the life of a person with Down syndrome is, essentially, not worth living."

The many people with Down syndrome that we know judge their lives to be very much worth living. It requires greater thought and support for families wrestling with difficult decisions before we judge otherwise.

Our interest is in seeing that prospective parents have ready access to accurate, up-to-date, balanced information, to allow them to make as informed a choice as they wish.

If we need a national strategy for prenatal testing for Down syndrome, then perhaps we also need a mandate such as that provided by the Kennedy-Brownback Bill recently passed by the US Congress, to legislate for the right to fully informed consent about it.

But the Sun-Herald has today published a letter from Lorissa Barratt, who has a young child with Down syndrome:

The article by Louise Hall, 'Test all for Down, urge doctors. NSW Health's policy 15 years out of date" (The Sun-Herald, December 7), is out of date itself. The figures are closer to 75 percent of mothers who give birth to children with Down syndrome under the age of 35, and we never say "Down syndrome baby". The correct expression is "a baby with Down syndrome", as they are individuals first and foremost - the syndrome does not define them.

The article also fails to mention the increased incidence of miscarriage in the additional screening tests, which is about 2 percent and often means women who may have had difficulty conceiving will choose not to have the tests.

Most of all, the article neglects to mention that babies born with Down syndrome are very much loved members of their families with a lot to offer society Families of children born with Down syndrome take offence at the notion that more tests are a useful way to "halve the number of babies born with the incurable genetic condition".

Edit, 17/12/2008: Abigail Elliott's letter to the editor was published in The Age today:

I just want the best for my son
Thank you to Angela Blakston (Focus, 12/12) and Kirsten Deane (The Sunday Age, 14/12) for highlighting the issues involved in genetic testing for Down syndrome. As the mother of a gorgeous eight-month-old baby boy, Willem, with Down syndrome, who came as a surprise, I have been trying to discover why I feel emotionally charged about genetic testing.

When people talk about genetic testing in terms of choice, that choice leads, more commonly, to termination if the baby has Down syndrome. If I had had an accurate screening result, my husband and I would have had to decide the future of our son. Now that he is here and I have seen the love, warmth and care that he has brought, I cannot bear to imagine him not here.

Having a child with a disability undoubtedly brings challenges, many compounded by the assumption that one would terminate if testing had found a problem. This unspoken devaluing of people with disabilities is a significant component of the struggle and sadness one feels on finding out your child has a disability. The longer that Willem is in the world, the more we realise that he is just our gorgeous son, whom we want the best for.

Kids Race Day: Oran Park, Sunday 21st December

A special day for kids with Down syndrome and other special needs,

Kids Race Day

will be held at

Oran Park Raceway

(Cobbity Rd, Narellan)

next Sunday, 21st December

• Click here for the detailed flyer
• Click here for the invitation

For bookings contact Priscilla:

priscilla@dsansw.org.au
02 9683 1900
0402 503 885

Media attention on the dimensions of pre-natal testing continues

• The December issue of Practical Parenting magazine out now in newsagents, includes an article "Think Before You Test", in which Fran Molloy talks to parents and experts about the implications of testing, with the introduction:
  Most pregnant women are offered a variety of prenatal screening tests, but what happens if you get a result you weren’t expecting?

The magazine is not available on-line.

• Angela Blakston's article published yesterday in The Age (Melbourne), has prompted the publication today of two letters to the editor congratulating her . Click here and either select "page 6", or "single page view", and they are the last two.

• A computer gremlin earlier this week meant that we missed this article from this week's US edition of Newsweek: "New Era, New Worry", marrying the implications of emerging technology, information provided to parents, the importance of the Kennedy-Brownback Bill (see this post) and one family's experience - illustrated with a lovely photo of two boys making the most of a fall of autumn leaves, as boys do.

Response to calls for a national prenatal screening strategy

Calls for an Australian national strategy for prenatal testing for Down syndrome reported in last Sunday's Fairfax newspapers in Sydney and Melbourne (see this post) have generated a good deal of comment. Most of it is about the need for counselling and information for parents contemplating or involved in prenatal screening and diagnosis. We anticipate some of that response will be published this weekend, including ours.

Angela Blakston, a Melbourne Age journalist currently on maternity leave following the birth of her son Gabriel, who has Down syndrome, today makes the case eloquently for both providing adequate information (a responsibility that is taken up by Down syndrome organisations world-wide, and increasingly by the professionals involved in prenatal testing - but we have some way to go yet) and follow-up. Gabriel's parents knew that he would Down syndrome before he was born. Angela confronts the difficulty of the issues that arise, the opposing interests involved, and the paradoxes of our own community's responses to recent events:

....... I feel saddened that, on one hand, we could see the unfairness and prejudice of the Moellers' situation. On the other, we send a message through the push for uniform, national screening that the life of a person with Down syndrome is, essentially, not worth living.

I know it's on this point that many people will disagree. It's all about informed choice and the right of a woman to be given the opportunity to decide whether to proceed with such a pregnancy, right?

Well, yes, that's true, in a sense. And this is where I want to stay clear of difficult territory. I can't say what's right or wrong for another woman. Or stand in judgement. But I can say that whatever "choice" a woman makes, either way, is rarely simple or easy.

She closes with a view that will resonate with other parents around the world:

These days my biggest encouragement, however, is Gabriel. And here's something all the scanning and technology in the world couldn't tell me: just how much I would love my boy for who he is, extra chromosome and all, and how truly wonderful he is. That love, as corny as it sounds, can conquer all.

This beautifully written and well-considered article deserves the widest audience - please read it in full, and share it around.

Knowing Gabriel, by Angela Blakston, The Age, Melbourne, Friday 12th December, 2008:

www.theage.com.au/national/knowing-gabriel-20081211-6wl8.html?page=-1

Library Thursdays: Signing resources

Signing helps people with Down syndome communicate. It can be used initially to help children learn how to communicate with others which leads to speech. And it can also enhance speech throughout a person's life. There are many resources in our library to help with the use of signing. Recent additions are:
Sign with Me - Learning Strategies for Key Word Sign, a short DVD produced by Makaton WA which explains why we do key word signing and how to do it. It is good for schools and services to understand how to use signing.
and

Let's play with sign, a book by Makaton Australia. It shows how to use scripting with Makaton. It only shows about 120 signs, but it helps people understand how to sign and which words to sign.

Other resources in the library for signing:

The Makaton Vocabulary - Auslan edition and Key Signs- a supplement to the Makaton Vocabulary.

Sing and Sign with Me by Aileen Ryan

Makaton Nursery Rhymes DVD - Variety Tasmania

Tiny Hands: Australian Sign Language for Babies to Toddlers by Aileen Ryan

Small Talk Reference Chart by Aileen Ryan

See and Sign picture books: Emotions/Feelings, Animals, Objects, Opposites, Food, Directions

To borrow any of these resources, email the library.

Or to see video of each Auslan sign demonstrated, go to Auslan Australia - online Auslan sign reference.

Research Directions Symposium: papers published online

Down Syndrome Education International hosted the inaugural Research Directions Symposium in the UK in October 2007. Reviews and updates on their current work were presented by leading researchers from a number of fields, and discussed over four days by their international colleagues. The first of the resulting papers are now published in the journal Down Syndrome: Research and Practice, in its advance online edition. The current print issue is Volume 12: Issue 2.

Since 2007, DownsEd has adopted a policy of making all of its publications freely available online, and for purchase in print formats. The comprehensive Down Syndrome: Issues and Information packages are in the process of being provided online by the Open Access project.

NSW Ombudsman's report: Down syndrome and dementia

The NSW Ombudsman has responsibility for reviewing the deaths of people with disabilities in care, and has just published the fifth annual report about reviewable deaths, concerning those occurring during 2007.

Report of Reviewable Deaths 2007: Volume 1 Deaths of people with disabilities in care was tabled in the NSW Parliament on 3rd December 2008, and can be freely downloaded from this link. The Ombudsman's introduction emphasises the ongoing monitoring role of the Ombudsman's Office, beginning:

My office is one of very few agencies in the world with the function of reviewing the deaths of people with disabilities in care.

Our work in reviewing individual deaths is important: it highlights gaps in service practice, policy and systems, and drives service improvement from a grassroots level.

It is through considering the deaths of people with disabilities in care more broadly, identifying trends, risk factors and systems issues, that we aim to minimise preventable deaths in this vulnerable community. Our annual report provides the means for us to consider the deaths of people with disabilities in care in the context of the larger service system, and to effect change across government and non-government agencies, and across disability, health, and other sectors.

The main way in which we seek to bring about change through our annual reports is by making recommendations to government and service providers, and monitoring the implementation of those recommendations until we are confident that progress has been made.

This volume includes a separate chapter on Down syndrome and dementia, prompted by the prevalence of dementia in people with Down syndrome whose deaths are reviewed:

....... this year we took a closer look at these individuals and current research in this area. Of the 63 people with Down syndrome who lived in care who died between 2003 and 2007, 29 were diagnosed with dementia. Of the 34 people who did not show signs that they had dementia while they were alive, five were noted at post-mortem to have changes in the brain consistent with Alzheimer’s disease.

The report includes a literature review on Down syndrome and dementia commissioned from the Centre for Developmental Disability Studies (University of Sydney), and a file review the people with Down syndrome and dementia who died in 2003 - 2007. The oldest person with Down syndrome whose file was reviewed was 79 (and had dementia), and another person of 70 is reported not to have had dementia. Comprehensive file reviews are illustrated by case studies.

12 recommendations arose from the review. Responses from the Department of Ageing, Disability and Home Care and NSW Health to each are documented, with further comments from the ombudsman.

Does Australia need a national prenatal screening policy for Down syndrome?

The Fairfax press picked up reports about the Danish research referred to in this post, and asked Australian (professional) experts if a national prenatal screening strategy for Down syndrome should be implemented in Australia. Disparities in the availablility of screening between metropolitan and rural communities, and between public and private patients were highlighted.

Down Syndrome NSW provided input, but not much of our contribution was used, particularly not our emphasis on the need for prospective parents to have access to adequate accurate and current information upon which to base an informed choice.

Similar articles were published by both the Sun-Herald in Sydney and The Age in Melbourne.

The Australian articles have prompted quite a bit of comment (and some re-reporting) on the Internet, including this response from a British blogger, "The Great Unasked Question in Down Syndrome Screening".

A debate about implementation of screening strategies might well be overtaken by the clinical release of non-invasive diagnostic prenatal tests using maternal blood samples in the first trimester. The development of tests using DNA sequencing technology to detect fetal DNA fragments from maternal blood are claimed by researchers to be well advanced. An apparently polite dispute over patents between two groups in the US was reported in the science press last week.

Slimming and swimming: healthy news from the UK and Portugal

While this is a great story from the UK about a woman with Down syndrome having the determination and persistence to lose a lot of weight, with the support of her sister, the photos are a particular delight. She looks very pleased with herself, as well she might!

And on another health and fitness note, the 4th International Down Syndrome Swimming Championships are just coming to completion in Portugal after five days of elite competition, and three years of preparation. Check the Down Syndrome Down Under Swimming Organisation's website for Team Australia's fabulous results, and the International Down Syndrome Swimming Organisation's site for all the results. Well done all round!

Library Thursdays: Easy Cook Book

Easy Cook Book: you simply look and cook Vols 1- 4 Department of Food Science, RMIT. Melbourne, Vic ; Villamanta Publishing, 1986-1998.

It's that holiday time of year when many of us want (or feel the need) to be cooking and baking special dishes. Independent Living Skills Resources has developed a series of cookbooks (available in our library) that are visual and simple to follow so that people with Down syndrome, or anyone that absorbs information better visually, can make wonderful meals and specialities. There are other cookbooks with pictures that are easy to follow but they are mainly aimed at children. This set of cookbooks would appeal to all ages and includes microwave recipes, vegetarian dishes, soups, salads and desserts. There are 4 volumes and each volume is spiral bound and has wipe-clean pages. The measuring cups and spoons shown are colour coded for easier use. Our recommendation for this holiday season is the microwave Plum Pudding from Easy Cook Book 3. Go to http://www.easycookbook.org/cookbooks.htm to see which recipes are in each volume (click on the volume number on the left). To borrow any of these cookbooks, email us at the library.

Joan Medlen (author of the Down Syndrome Nutrition Handbook--available from the library)provides a service to create visual recipes from standard ones so if there is a family favourite that you'd like to makeover, have a look at Joan's site. You can download a sample of a recipe and the visual makeover. Her visual cookbook, Cooking by Color is soon to be released.

How many boys dream of being firemen ....

Travis is 12 and wants to be a fireman. What boy doesn't? Travis has Down syndrome, and lives in a small rural town in NSW. His Mum actively seeks opportunities for him to meet other kids with disabilities (often at some distance), and to be involved in everything the small local community has to offer.

Local kids join the local fire brigade as cadets, and undergo training. They are not allowed to fight actual fires until they are at least 16.

Travis recently became a cadet, and was hesitant to join in at first. But now he (and the others) have their uniforms, and his enthusiasm has sky-rocketed. He will wear his orange overalls for six months, and then the coveted two-piece fire suit.

A few weeks ago he managed a two day training course, along with the other cadets.

He will learn the skills of firefighting at his own pace, and be supported along the way.

Will he ever fight a bushfire? No-one knows - but we do know that he has a place in his community, and the fire brigade is helping him to find it.

In the meantime, it is difficult to tell who is the most proud - Travis, with his new-found swagger, or his Mum.

Today is International Day of People with Disabilities 2008

Lots of events are planned to celebrate International Day of People with Disabilities.


Click here for the official NSW DON'T DIS my ABILITY website, and here for the national website, both of which include stories and lists of events (not all events are scheduled to be held today).

The ABC commissioned Jan Gothard, a WA disability activist with a particular interest in immigration to write recent cases, for publication today. Click here for Jan's article and the following debate from readers.

Special Olympics: new funding to provide sporting opportunities for more people

Special Olympics is an important part of the lives of many people with Down syndrome, who participate in a wide range of activities across NSW, enjoying sports, making friends, learning and developing new skills. Some go on to compete at State, National and International level. All are supported by volunteers.

A one-off additional funding grant of $4000,000 to Special Olympics NSW has been announced by the NSW Minister for Disability Services, coinciding with International Day for People with Disabilities, which occurs tomorrow.

Olympics Australia CEO Catriona Barry welcomed the funding.

“We know there are literally tens of thousands of people with an intellectual disability who could be participating in sports.”

“With this funding we now have the resources to be able to get out into the community, find them, and get them out there participating and enjoying the benefits of an active lifestyle.”

“We will be able to have more people working in the community, linking people with an intellectual disability to sporting opportunities.”

“There are so many people with an intellectual disability that are keen to have a life outside of their home or workplace, and we intend to create a community for them where they can be part of a supportive environment, get active, and have fun.”

“With a growing number of participants we will need more volunteers.”

“So as well as allowing us to better reach out to the approximately 68,000 people in NSW with an intellectual disability, this funding will also allow us to reach out to more volunteers,” she said.

The Special Olympics NSW provides individual and team sports, winter and summer sports, sports for younger people and also programs for older people who want to stay active.

As well as recreational sports, the organisation offers regular local competitions and annual State competitions at which athletes were selected to represent NSW at national competitions.

Gabrielle Clark: Special Olympics Dr John Day Award 2008

Gabrielle Clark has been announced as one of two winners of the prestigious Dr John Day Award, for 2008, by Special Olympics Australia. The other winner is Kelly Wren.

Gabrielle is quoted as saying: 'Special Olympics has helped me achieve so much in my life - I just want to give something back so that other athletes can see what can be done if you have support'.

The full citation for both awards is here.

Gabrielle and her family have been members and supporters of Down Syndrome NSW over many years, and have been active in several roles. We add our congratulations to the many others she has received on this occasion.

National Disability Insurance Scheme campaign website

Campaigners for the development of a universally available National Disability Insurance Scheme have established a website to provide updates about the campaign, and the submission of its paper to current consultations on the National Disability Strategy (see this post).

"Ranking alongside Medicare and compulsory superannuation, the scheme would be a visionary economic and social reform for the benefit of all Australians. "

The campaign is endorsed by a wide range of organisations, listed on the site. You can sign up for updates as the campaign progresses.

Self-Managed Community Participation Projects

Interest is growing locally in ways in which people with disabilities can be supported while making real choices about their own lives - we should have more to report later in the week.

On Friday, the Self-Managed Community Participation Project, was celebrated at a function in Sydney highlighting several individual experiences of people supported by Ability Options, and funded by the Department of Ageing, Disability and Home Care.

The Minister for Disability Services introduced the program and its aims to the audience, and a number of case studies were presented by family members, one of them the family of a young man with Down syndrome.

Two of the family presentations are included in the Minister's media release about the Self-Managed Community Participation Project

Opening the World to Ross is a Bega District News report from October 2008, about a young mna accessing a similar project in rural NSW.

Danish population study: numbers of babies born with Down syndrome reduced by 50% with implementation of national screening

In the same week that reporting of a small increase in the numbers of babies born with Down syndrome in the UK is being debated (click here for some examples of the arguments; and here for a deeper analysis by Frank Buckley; and here for Tom Shakespeare's succint view), a new study from Denmark found a very different phenomenon.

A research study of all pregnancies and births in Denmark over the period of implementation of national screening recommendation is reported in the British Medical Journal published online on 27th November 2008. The number of live births of babies with Down syndrome was halved during 2005 - 2006, compared to 2000 - 2004.

From the published report:

What is already known on this topic

• Many countries are currently trying to achieve national screening strategies for Down’s syndrome

• None has described how a combined screening strategy in the first trimester affects numbers of infants born with Down’s syndrome or rate of invasive procedures
• Detection rates and false positive rates for the combined first trimester risk assessment have been reported only from specialised centres or from regional experience

What this study adds

• After implementation of a national screening policy in Denmark, the number of infants born with Down’s syndrome and the rate of invasive procedures was noticeably reduced
• The screening strategy achieved high detection rates and low false positive rates

The full text of the report is available at BMJ Online, by clicking on the link below:
Impact of a new national screening policy for Down’s syndrome in Denmark: population based cohort study: BMJ 2008;337:a2547

New research on a prenatal intervention

A US study of a potential prenatal treatment of a mouse model for Down syndrome, aimed at promoting neuronal development, is being widely reported, following publication of the report of its findings in the current issue of the scientific journal Obstetrics and Gynaecology.


Frank Buckley, CEO of Down Syndrome Educational International has published an excellent summary in his blog, Frank Talk. He provides links to background information that helps in understanding both the research project and the information it is built on, and to reports in the mainstream media.


Reference to the original research report (available free online):
Laura Toso, Irene Cameroni, Robin Roberson, Daniel Abebe, Stephanie Bissell and Catherine Y. Spong, Prevention of Developmental Delays in a Down Syndrome Mouse Model, Obstetrics & Gynecology, 2008;112:1242-1251

Minister for Immigration's statements, and more media reports

The Minister for Immigration, Senator Chris Evans, has issued three statements in relation to the Moeller family's approval for permanent residency granted yesterday, and to the proposed review of the immigration criteria:

• Statement by Senator Evans on Dr Bernhard Moeller
• States urged to support regulations for health waiver
• Parliamentary Committee to investigate migration and disability

• This ABC news page links to a video report from ABC TV News, including interviews with the family, and the announcement in the Senate by the Minister.
  
  And this page records an interview this morning with Federal Parliamentary Secretary for Disability Services Bill Shorten, who said:
  
  " ...... the current migration laws do not recognise the positive contribution disabled people can bring to the community.
  
  "Just because you are a person with a disability, does not mean you are a cost," he said.
  
  "We need to understand that you are a contributor.
  
  "And we've got to move beyond just looking at the person with a disability, beyond looking at their impairment and move to understanding there's a whole person with marvellous abilities in many cases.
  
  "There are concerns that the health requirement only considers the estimated cost to the public health system - along with state-related costs such as special education needs and community service - and it doesn't recognise that a person, a young person with a disability ..... can contribute to the community."

• Down Syndrome Victoria issued this media release yesterday.

Edit 28/11/2008:

• Response from the Human Rights Commissioner

Library Thursdays: "Count Us In"

Count Us In by Jason Kingsley and Mitchell Levitz,Harcourt Books, 2007.

The groundbreaking, stereotype-changing book, Count us In was originally written in the early 90s by two young men, Jason Kingsley (age 19) and Mitchell Levitz (21), who have Down syndrome. It is their view of life, relationships and other things that were important to them. It is an interesting book, giving not only an insight into two young people with Down syndrome but also an understanding of the early years of inclusion and the times not that long ago when parents were told to leave their baby in an institution and “tell your family and friends that he died in childbirth”.

This book has been re-issued with an afterword by the two men, now in their thirties, and their mothers, telling what has happened in their lives in the subsequent years. It is a great look into the possibilities and realities of life for adults with Down syndrome. At the time that Kingsley and Levitz wrote the book, they did so with the mission to be inspirational role-models for others with Down syndrome, to show people what they could achieve and to show others that they are just like everyone else. They have certainly succeeded and the book remains relevant and inspiring.

Interview with Kingsley and Levitz for The Jewish Week

To borrow the book from the library, Click here

Moeller family granted permanent residency - criteria to be reviewed

The family of Dr Bernhard Moeller (whose son, Lukas has Down syndrome) has been granted permanent resident status in Australia. The decision was announced today (26th November) in the Senate.

The family's appeal was rejected yesterday, and the Minister intervened today.

The Minister, Senator Chris Evans, has announced that the immigration treatment of people with disabilities would be referred to the Joint Standing Committee on Migration.

• ABC News report
• ABC News Samantha Donovan's interview with Dr Moeller for PM
• The Age (Melbourne) report

iPODS in special education classrooms, and beyond

At our recent seminar for disability services professionals in Queanbeyan, a speech pathologist who was in the audience told us about this excellent You Tube link to a well-produced 8 minute video about using iPODS creatively in a special education classrooms.

Of course, these ideas could be used in regular classrooms too. For older children, adolescents and adults, an iPOD could well be a cool enough device to encourage them to use visual supports that they might otherwise find too different from how others communicate. We'd be very interested in hearing about other innovative uses of iPODS by people with disabilities.

It's got us thinking about iPODS ......

Number of newborns with Down syndrome increased in UK

It is estimated that two babies are born each day in the UK. In response to statistics showing a rise in the number of babies born with Down syndrome in the UK since 2000, following an initial decrease after the introduction of prenatal screening in 1989, the London based Down's Syndrome Association has asked 1000 families about their reasons for choosing to continue with pregnancies.

The results, released in a Radio 4 documentary, "Born with Down's Syndrome", show that many believe the quality of life for people with Down's syndrome will be better than in the past and that those with Down's syndrome are more accepted in society. Click here for the full text of the DSA's press release issued on 24/11/2008.

Commentary by Times journalist Simon Barnes, father of Eddie, 7.

The programme "Born with Down's Syndrome" was broadcast on BBC Radio 4 on Monday November 24th 2008 at 8pm. It is presented by Felicity Finch. Click here for online audio.

Click here for the figures from the National Down's Syndrome Cytogenetic Register on the number of births can be found in their 2006 report.

Adolescents with Down syndrome: research report on aerobic exercise and indicators of oxidative stress

The latest issue of the British Journal of Sports Medicine Online has a Short Report on a Spanish research study demonstrating that a 12 week aerobic exercise program reduced plasma levels of allantoin, a measure of oxidative stress, which "has been proposed as a pathogenic mechanism of several pathologies" in people with Down syndrome.

The researchers' conclusion:
A 12-week aerobic program reduced significantly oxidative damage expressed in terms of plasmatic allantoin content in adolescents with Down syndrome. Further studies on this topic are required.

The abstract of the report is available online (click here), and the full text is available for purchase.

Journal reference:
A 12-week aerobic training program reduced plasmatic allantoin in adolescents with Down syndrome, Rosety-Rodriguez et al. Br J Sports Med 2008 0 (2008), p. bjsm.2008.052530v1

Disability Confidence: a new website for employers and business launched

The Disability Confidence website was launched this week, by Federal Parliamentary Secretary for Disabilities, Bill Shorten. The new site was developed by the Australian Employers Network on Disability, to provide businesses with information about the importance and potential of people with disabilities to every aspect of their business, with particular emphasis on employment, and as customers.

Its print publication Opportunity can be downloaded from the website, or ordered in hard copy. The Parliamentary Secretary's media release says:

"Opportunity includes tips on becoming confident about meeting the needs of employees and customers with disability, as well as important statistics, case studies and a checklist of actions businesses can take to make their products and services more accessible.

.....For Australian businesses, people with disability should be seen as a significant market and source of labour, not to mention a large group with spending power which can no longer be ignored."

Library Thursdays: "Up Close"

We're introducing a little order into this blog, by offering a post every Thursday featuring an item (or maybe a few) from the DS NSW library - one of our most valuable resources to support and inform families.

First up is a new acquisition, a very attractive book of written and photographic reflections of the relationship between a mother and her daughter who has Down syndrome. It's not actually about the Down syndrome - it's about the relationship:

Up Close - a mother's view, by Fiona Yaron-Field, Bunker Hill Publishing, 2008

It is available for loan to DS NSW members from our library

London Metropolitan University article.

More of Fiona Field's work:

Shifting Perspectives Exhibition, London

Fiona Yaron -Field's story about Ophir on Learning About Intellectual Disability

Edit 4/12/2008: an extract is available here on the Guardian UK website.

Up! Club Camp 2008: Mowbray Park Farmstay

This year's weekend camp was held at a new venue, Mowbray Park Farmstay at Picton. There was more to do than there was time for, and everyone had a great time.















The bush dance on Saturday night was a hit.




















It was voted the best camp ever! Thanks Brooke, and the wonderful team of volunteer supporters.