Wednesday, 31 December 2008
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:
Tuesday, 30 December 2008
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.
Monday, 22 December 2008
The committee and staff of Down Syndrome NSW wish our members, friends and colleagues a happy holiday season.
Saturday, 20 December 2008
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.
Friday, 19 December 2008
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.
Thursday, 18 December 2008
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.
Wednesday, 17 December 2008
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".
Tuesday, 16 December 2008
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
Monday, 15 December 2008
....... 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.
Sunday, 14 December 2008
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 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
will be held at
Oran Park Raceway
(Cobbity Rd, Narellan)
next Sunday, 21st December
For bookings contact Priscilla:
02 9683 1900
0402 503 885
Saturday, 13 December 2008
- 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.
Friday, 12 December 2008
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:
Thursday, 11 December 2008
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.
Wednesday, 10 December 2008
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.
Tuesday, 9 December 2008
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.
Monday, 8 December 2008
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.
Friday, 5 December 2008
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!
Thursday, 4 December 2008
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.
Wednesday, 3 December 2008
In the meantime, it is difficult to tell who is the most proud - Travis, with his new-found swagger, or his Mum.
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.
Tuesday, 2 December 2008
“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.
Monday, 1 December 2008
"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.