Wordless Wednesday

We're Mad as Hell

In preparation for the Federal election scheduled for later this year, and a NSW State election in March 2011, the Mad as Hell campaign has been launched to focus attention on the unmet needs of people with disabilities and their carers, and to encourage voters to actively look for policies that will support people with disabilities. Visit the website to read about the campaign and to take the We're Mad as Hell pledge.

Arabic speaking parents and carers of children with Down syndrome

- you are invited to an information morning. Our librarian will be available to assist you in choosing appropriate resources from our library.

Enjoy an opportunity to meet with other parents and share experiences and information

Thursday 29th April, 2010
10:00am – 12:30pm

At our new DS NSW Seminar Room
80 Weston Street, Harris Park

Morning tea will be provided, but if you would like to bring morning tea to share it would be appreciated! (Please no peanut products)

Young children are welcome but must be supervised at all times by the parent.

If you wish to attend or require further information, please

• phone Lynn or Miriam at DS NSW, on 9841 4401
• or Maha on 0408 205 522

That's what friends are for ..... supporting young people with Down syndrome to make and keep friends

- a workshop for parents and carers

Saturday, 29th May: Tamworth

9.30 am - 3.30 pm
Best Western Sanctuary Inn, Tamworth, NSW

presented by Susan Jones, Step Ahead Consulting

Flyer and registration form can be downloaded from here

• or contact Siena at DS NSW: ph. 02 9841 4411 or workshops@dsansw.org.au

Preliminary memory training study underway: DownsEd

Down Syndrome Education International has embarked on the evaluation of a computer-based memory training program. Collaborating with researchers at the University of York, UK, and the Down Syndrome Research Group at the University of Arizona, USA, we are conducting a preliminary evaluation of the programme with children with Down syndrome in preparation for a larger trial. ...... Read more here at DSEI News, 30/3/2010

DownsEd In Touch also reports the very positive feedback from the first free online research seminar held last week - some of our staff participated and found it very worthwhile. Future dates and AEST sessions are here.

Our society will be worse off if we reject Down syndrome children

Chris Meney, director of the Catholic Archdiocese of Sydney's Life, Marriage and Family Centre, has written an opinion piece published by today's Sydney Morning Herald:

We like to think we care deeply about those who suffer. We like to believe we are willing to do whatever we can to help those burdened by intellectual or physical disability. It seems to resonate with the way we believe we ought to act towards our fellow human beings.

But there are indications our society is moving towards avoiding having to associate or engage with the disabled, particularly the intellectually impaired.

The situation of the disappearing Down syndrome babies in Australia in the past few decades is a case in point. Of about 300 pregnancy terminations in NSW every year due to detected birth defects, 77 per cent are associated with a chromosomal abnormality. The most common is Down syndrome. Read on for the entire column.

The online publication has drawn wide ranging comments.

Edit 31/03/2010: And replies in the letters column yesterday and today also pose different view - click here and here.

Research project begins for the provision of therapy services in rural and remote NSW

Media Release from the Minister for Disability Services, 10 March 2010

The NSW Minister for Disability Services Paul Lynch today welcomed the start of a major research project into the provision of therapy services in rural and remote NSW.

Mr Lynch said the four year project, a joint enterprise between Ageing Disability and Home Care (ADHC) and the University of Sydney would focus on the effectiveness of the delivery of psychology and therapy services to people with disabilities living in rural and remote NSW.

“The project will be managed by Professor Craig Veitch of Community Based Health Care at Sydney University and ADHC’s Western Region Director, Scott Griffiths and his staff,” Mr Lynch said.

“The project will focus on three areas of therapy provided by ADHC in the Western Region - speech, occupational and physiotherapy, and psychology.

“The researchers will cooperate with clinicians who are working with people with disabilities in the Western Region.

“Given the lack of research in this particular area, there is little doubt the project will provide a new set of information will assist in the formulation of policy, future education of psychology and therapy students, as well as how they will deliver services in rural and remote communities,” he said.

The Dean of the Faculty of Health Sciences at the University of Sydney, Professor Gwynnyth Llewellyn, said the project is vital to the ongoing development of services for people with disabilities.

Professor Llewellyn launched the project on Wednesday 10 March 2010 at Ageing, Disability and Home Care Regional Office,Dubbo

Scrapheap Adventure 2010 - the T shirt!

Next weekend, the inaugural Scrapheap Adventure will make its mark on the NSW calendar.
Scrapheap Adventure Ride Touring Shirts now on sale - great mementos of this unique event. Click here to purchase your shirt.

www.scrapheapadventure.com.au

Substitute decision making for people lacking legal capacity

From i:D, March 2010 .... the bulletin of the Disability Council of NSW

The NSW Parliament’s Standing Committee on Social Issues has published its report on the Parliamentary Inquiry into “Substitute decision-making for people lacking capacity”. The report is available in PDF at the Committee’s web site.

The Report makes the following general observations (which are broadly consistent with the Disability Council’s submission to the Inquiry):

“Any provisions for substitute decision-making must strike a delicate balance between two competing duties of government towards people with disabilities – to respect and maximise their autonomy while at the same time protecting them from abuse. The manner in which these competing duties have been weighed throughout history reflects the dominant paradigm of the era in relation to the treatment of people with disabilities.”

“The current paradigm, which emphasis principles such as the presumption of capacity, the principle of least restriction and the promotion of assisted decision-making – as opposed to substitute decision-making – is largely enshrined in the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). The way in which the UNCRPD can inform and be incorporated into NSW legislation formed one of the major themes of this report.”

The Committee makes 35 Recommendations including the following matters:

• Introducing a legal definition of capacity;
• Creating a presumption of capacity;
• Support for assisted decision-making;
• Further recognition of the concept of ‘best interest’;
• Reviews of Guardianship automatically triggered by evidence of re-gained capacity;
• Automatic review of Financial Management Orders;
• Consideration of legislation to enshrine least restriction in practice;
• Assisted decision-making powers for the Public Guardian to allow it to assist people not under Guardianship;
• Creation of an Office of the Public Advocate;
• An inquiry into end of life decision-making.

For further information" www.disabilitycouncil.nsw.gov.au

Library Thursdays: Resources in languages other than English

In multicultural Australia, there is a need for resources in various languages. The library has a wide variety of resources in languages other than English. Resources in Arabic, Chinese and Vietnamese are the most plentiful as they are the most commonly non-English languages used in NSW. They can be accessed here.

In addition we have limited resources in Japanese, Korean, Finnish, Hindi, Urdu, German, Dari, and others. We also have a range of journals from other countries.

Contact if you have a need for information in a language other than English and we will try to provide you with information.

Down Syndrome Education International also has some resources in Spanish and Norwegian and are keen to work with other organisations to provide more translations.

MDAA (Multicultural Disability Advocacy Association) also provides some resources on disability in general in various languages.

If you are interested in borrowing any of the non-English materials or would like to borrow anything else, just email or phone.

World Down Syndrome Day in the media

Calls for more understanding on World Down Syndrome Day

Jacob Short and Ji Butler are like most other teenage boys.

They spend endless afternoons on the Playstation, competing against each other in Wii Sports and love hitting the bowling alley or having a game of bocce.

They just have something extra which makes them a little different - an extra chromosome.

Both boys have Down syndrome and their folks think its a blessing and a privilege to parent such spirited sons ..... Read the entire article from the Blacktown Advocate here.

People with Down syndrome ...... could unlock mysteries of aging

USA Today spoke with several leading researchers, specialist medical professionals and families for their survey of how biological differences discovered in people with Down syndrome are shedding light on a number of health problems that occur amongst all people. The report includes some delightful photos of a 59 year old woman with Down syndrome.

As they live longer, adults with Down syndrome — who have an extra copy of chromosome 21 — are teaching scientists about the genetic roots of aging, says Ira Lott, head of pediatric neurology at the University of California-Irvine School of Medicine.

Scientists today are searching this chromosome, which contains only about 200 of the body's roughly 20,000 genes, to learn why people with Down syndrome suffer disproportionately from some health problems, such as Alzheimer's disease, but are spared many others, such as heart attacks, strokes and certain types of cancer.

By studying adults with Down syndrome, researchers hope to find new ways to combat diseases of aging in the larger population as well, Lott says.

"It's an interesting detective story," says Lott, head of the science advisory board of the National Down Syndrome Society. "People with Down syndrome are unique when it comes to many aspects of aging."

.....

Reeves says he's grateful to the Down syndrome community for teaching scientists so much.

"If it weren't for people with Down syndrome having fewer tumors," Reeves says, "we never would have thought to look for anything like this."

To read the entire article and to see the photos, click here.

Dural dad takes on the Scrapheap Challenge

Go the Kelly family! The Hills Shire Times tells the story .....

The Kelly family of Dural will be spending Easter on a big red dirt road heading west of Bourke.

For 14-year-old Cassie and her mum Fiona it will be a fairly comfortable ride in the Landcruiser while Cassie’s dad Rod will doing it tough on an old postie’s bike.

Read on for more, and a picture of the bike.

• Sponsor Rod Kelly here.
• More information on the event, other participants, and registrations - click here
  

Dance Like Nobody’s Watching - the DVD

If you missed the screening last night of this new documentary about living with Down syndrome in 21st century Australia, or if you just want your own copy, you can purchase it on DVD from:

Down Syndrome New SOuth Wales: call 02 9841 4444, or email library@dsansw.org.au

or from

G.A.P. Media: http://gapmedia.com.au

DS NSW members can borrow a copy from our library.

Your local library might be interested in adding it to its collection - just ask the librarians.

More alike than different .... US campaign video

The National Down Syndrome Congress, a US national organisation's campaign, "We're More Alike than Different" now features an online video showcasing some aspects of the lives of four adults with Down syndrome - see it here. Good viewing around World Down Syndrome Day!

World Down Syndrome Day: what's on, where and when

Celebrating the lives of people with Down syndrome all over the world.

More World Down Syndrome Day events around NSW


Vintage by the Sea - Shabby Chic Market
Sunday 21st March, Cronulla, 9am – 4pm
Cronulla Masonic Hall
43 The Kingsway, Cronulla
Inquiries: Robyn 0425 243 520

Penrith - World Down Syndrome Day Afternoon Tea 4 '321'
Sunday 21st March, 2pm
Church of Christ, 156 Stafford St, Penrith
All welcome – but please rsvp for catering (call Siena on 042 5207 916)

Narrabri: World DS Day Lakeside Picnic and Games

Cheer on ‘TEAM MOG’ in the Tuff Truck Challenge 2010
27th - 29th March: Hunter Valley
Attempting a top ten finish, raising funds for Down syndrome
nr Milbrodale in the Hunter Valley
Support Team Mog by clicking here or go to www.tufftruck.com.au for details of how to attend .

2nd - 4th April: Wanaaring
An adventurous outback World Down Syndrome Day event…
Cheer our 'Scrapheap Adventurers' as struggle to get to Wanaaring (200km back of Bourke) before the Easter bunny on their machines resurrected from the scrapheap.
Follow their journeys on ther blogs and give them your support at the Scrapheap website www.scrapheapadventure.com.au
Bike or no bike... everyone's welcome at the Wanaaring Pub on Saturday 3rd of April to celebrate World Down Syndrome Day in unique style...

Sunday 18th April: Five Dock
World Down Syndrome Day Morning Tea 4 '321'
All Hallows Catholic Church
Halley St Five dock
After the 10am Mass (approx 11am)
Special Guest: The Mayor, Angelo Tsirekas

Dance Like Nobody's watching - interview with director, ABC radio 702 Friday 19th, 10.30

Deb Cameron will be talking to Liz Collins, the director of the new film Dance Like Nobody's Watching, looking at living with Down syndrome in 21st century Australia .... through the eyes of Paul Matley, who has Down syndrome.

10.30 am, Friday 19th March, ABC radio 702

The film is screening at Cremorne on Monday 22nd March, to mark World Down Syndrome Day. Details and booking options are here

Library Thursdays: Making a Case for Life: A New Definition of Perfection

New to the library this week is a slim book, Making a Case for Life: A New Definition of Perfection, written by Stephanie Wincik, a nurse in the U.S., who has worked for many years with individuals with intellectual disabilities. She was prompted to write this book when she discovered that 80-90% of fetuses diagnosed with Down syndrome are aborted. She is not against abortion per se but feels that each case should be made after receiving clear and unbiased information and she believes that that information is not being received. So she wrote this book addressing the standard myths and arguments against having a child with Down syndrome. She also includes an interview with a young woman with Down syndrome, Bridget Brown, who has set up an advocacy group, Butterflies for Change. She also interviews Bridget's mother about having a child with Down syndrome. Lastly she discusses what people with Down syndrome bring to the world and why it is important that society does not condemn them as imperfect and unworthy of life. Wincik proposes that in these times, society could use the traits of people with Down syndrome and that we need to create a new definition of perfection. She further illustrates this with the inclusion of Dennis McGuire's excellent article "If People with Down Syndrome Ruled the World".

Wincik is clearly passionate about the topic. Her arguments are sound and will be of no surprise to families of people with Down syndrome. The fact that her connection with people with Down syndrome is as a professional helps to balance the zealousness of the book. Presumably the target audience is those with a pre-natal diagnosis or the medical profession. Both may better access this over the internet but as part of a pre-natal pack it may be useful. Another use would be to give to extended family members who have trouble accepting a child with Down syndrome and the decision of the parents. I enjoyed the essay at the end about the need for diversity in the world and rethinking perfection. And I enjoyed re-reading McGuire's article in this context. I think the interview section in the middle was fine but maybe more voices would have added to the book. It is nice to see this type of book and I hope that it raises awareness with some and gets people thinking.

If you'd like to borrow this book or any other from the library, just email.

Stephanie Wincik's website

Another look at selecting the perfect baby

Celebrating World Down Syndrome Day

Penny Green in the UK has written a thoughtful post about Celebrating World Down Syndrome Day, (Sunday 21st March) highlighting three important things she has learned.

And remember our screening of Dance Like Nobody's Watching on Monday 22nd is one of our celebratory events - there are some tickets available still. Click here for information.

And some great news for The Enchanted Forest Black Tie Ball on 27th March - WES CARR will perform LIVE & UNPLUGGED - a unique opportunity to meet Wes Carr and see him perform a rare live, intimate acoustic set.

Enchanted Forest details here

Modified touch football at Baulkham Hills

Norwest Rugby is considering developing a modified touch program, for boys and girls with special needs, aged from under 6 to 19 yrs old.

The rules are not finalised and there is an opportunity for parental input. Parents would be required to remain on site, to provide adequate supervision.

For information phone Mike Cox, from Norwest Rugby on 0415 230 524

World Down Syndrome Day: by the lake, in Narrabri

Narrabri will celebrate T4321 for World Down Syndrome Day at the Narrabri Lake on Sunday 21-3

If you would like to share in this special day please just come. We love to share fun times.

We will meet from 11.30 for a BBQ and catch up. Bring your own lunch eg sausages, bread, drinks and perhaps a salad or slice to share and a chair for between games.

We have a set of boules but are looking for a set of quoits for games and a basket ball so we can maybe shoot a few hoops at the new court.

If it is wet we could adjourn to the Wilga.

Phone Marion on 6792 3420 or just turn up

Images from our archives (2)

The Summer 1998 - 1999 issue of the Down Syndrome NSW Newsletter had this sunny photo of Lucy Dumitrescu on the cover - it was taken to illustrate a children's book of colours, and was chosen as the cover photo for it too.

And as it happens, this summer, Lucy was again featured in a cover photo, this time for the TAD Journal, January 2010 (the cover story is on p.4), published by Technical Aid for the Disabled, NSW. The accompanying cover story is about Lucy's bike, adapted by the Freedom Wheels program, allowing her to enjoy cycling independently, and to participate in triathlons!

• Some of Lucy's other sporting achievements have been featured here and here.

Latest quarterly publications from Down Syndrome NSW

From the March 2010, Down Syndrome NSW and Down Syndrome Victoria are publishing, in collaboration, Voice, a quarterly journal, into which each State will place its own supplement.



The online edition of the Down Syndrome NSW News supplement, March 2010 is available online here, including links to the Voice March 2010 feature articles.

Members will have received their quarterly mailout in the last few days, including Voice, March 2010, and the March 2010 issue of the monthly listing of events, Down Syndrome NSW Update. The online edition of the March 2010 Update is here.

Library Thursdays: Behaviour resources

Every parent has to address behaviour issues with their children and parents of children with Down syndrome are no exception. Communication and medical issues can add an extra layer to this. There are many resources out there to help. The library has many resources on behaviour and social skills. One of which is the Stepping Stones Triple P: A survival guide for families with a child who has a disability. This is a video and booklet that uses the Triple P (Positive Parenting Program) to work out ways to deal with difficult behaviour. For more information or to find a course or practioner in your area go to The Triple P website.

Disability Solutions has an old but still useful issue dedicated to challenging behaviours. Down Syndrome Education International discusses the research dealing with social behaviour in its Social Development in children with Down syndrome book available online or from our library.

Other resources:

Kathleen Feeley & Emily Jones, Strategies to address challenging behaviour in children with Down syndrome, Down Syndrome Research and Practice 2008, 12:(2) 153-163.

Sensory Integration Difficulties

Carol Johnson's article, Stubborn is as stubborn does

David Pitonyak, 10 Things you can do to support a person with difficult behaviours. And his website, Imagine.

Other links on our website under Communication,language and Behaviour.

If you'd like to borrow Stepping Stones or any other resource from the library, just email us.

Run with the LAW !

You could make history by joining your local police forces (Law Enforcement Torch Run) and Special Olympics athletes for the first ever Run with the LAW.

From 19 March to 19 April 2010, police officers will take the 'Flame of Hope' through 40 cities across six states and territories in 29 days to support Special Olympics Australia, the charity that transforms the lives of people with an intellectual disability through regular sports participation and social inclusion.

Special Olympics needs your support to continue running 11,000 weekly sports sessions for people with an intellectual disability across 250 sports clubs in Australia.

The 2010 Run with the LAW fun run aims to promote equality, acceptance and friendship of people with an intellectual disability, and you’re invited to be part of this history-making event. Everyone is welcome!

Simply register to run a full leg, half leg or last 100 metres in any of the 40 events across Queensland, New South Wales, ACT, Victoria, Tasmania and South Australia and you will be the first to experience the fun and excitement of Run with the Law and, at the same time, make a difference to people with an intellectual disability living in your community.

So, register today. Just click REGISTER TO RUN to start your own fundraising page:
www.runwiththelaw.com.au

or contact runwiththelaw@specialolympics.com.au

Launch of book project: call for submissions

Submissions are being sought from parents (both mums and dads) who have a child with Down syndrome and who are keen to write about their experiences: of how they dealt with their child’s diagnosis; of what they thought life would be like with their child and how, in reality, it has turned out to be; and the gifts (for instance, acceptance, respect, love, courage and delight) that child has brought into their lives.

The submissions will be compiled into a national book, with the working title Now I See. The book is aimed at raising awareness (and challenging outdated ideas) about life today for children with Down syndrome and their parents. All submissions will be considered. More information: www.nowisee.com.au

Fraser Pollock - exhibition

If you enjoyed 13 year old Fraser Pollock's artwork in our Summer 2009 - 2010 Newsletter, you will be interested in seeing more. Fraser will be exhibiting with a number of other artists at the Sheffer Gallery (38 Lander Street, Darlington) 7th - 17th April 2010, in frank 'n' friends.

The gallery is open Wednesday to Saturday, 11 am - 6 pm. Ph 9320 5683

Accessible Arts: March 2010 Newsletter

As always, the March 2010 newsletter from Accessible Arts is full of news about opportunities to participate in arts events and activities. Read it online here.

2 new Special Olympics dance groups : Inner West

Two new dance classes for people with intellectual disabilities are being established in conjunction with Special Olympics Inner West region. Participants must register with Special Olympics to join in the regular program.

Registration is $70 per year and allows you to participate in any Special Olympics Program


1. Haberfield

Wednesdays, 5.15. - 6.30 pm
from 10th March 2010

Mervyn Fletcher Hall, 18 Dalhousie Street
Haberfield

Cost: $5 per session– paid per term

For more information about the program and registration please contact:

The Registrar ph. 0402 154 167, or maryrosewigan@optusnet.com.au



2. Canada Bay (Dorothy Cowie School of Dancing, sponsored by Canada Bay Council)


5.15pm-6.15pm Tuesdays, from Tuesday 9th March
Age is open from 7 years - Jazz/Hip Hop

Canada Bay Civic Hall
1a Marlborough Street Cnr Marlborough and Lyons rd)
Drummoyne
(Parking in Marlborough St and across the road in Franklin’s car park.

Tuition $50 per dancer per school term

For further information, volunteering & registration for Special Olympics contact:
Kathleen Collins , Sports Co coordinator for Special Olympics NSW Sydney Inner West Region , at kath2012@tpg.com.au or Ph 0405 100 753

Ten Things people with Down syndrome would like you to know ....

Here is a short presentation you might care to use to help celebrate World Down Syndrome Day (21st March, 2010)



If you wish to pass on a direct link, use: www.youtube.com/watch?v=tDjnNDRP_2o

From the Times Online - Simon Barnes: life with a son with Down's syndrome

Simon Barnes is a British Sports journalist and author, whose writing about his young son Eddie we have enjoyed and admired over the years. Now he's written a new book (not just about having a child with Down syndrome), and the Times Online has published an extract this weekend, about Eddie's love of books, how sign has enhanced his communication, and he poses the question, What is Eddie for?

His short answer is Eddie’s function is to be loved, and to love in return. Perhaps that is everybody’s ultimate function. Read the extract, and then maybe the book, My Natural History: The Animal Kingdom and How it Shaped Me by Simon Barnes (Short Books, not yet released) for the long answer.

The comments are appreciative and apt, without being overly sentimental - such as Thanks.......refreshing to read a piece that is so delightfully uncomplicated.

An earlier about Eddie, by Simon Barnes:

• I'm not a saint, just a parent

All the world's a stage - some can't get in

Adam Fulton's commentary on a recent Australia Council for the Arts report, focuses on participation in the arts by groups including those with disabilities (All the world's a stage - some can't get in, Sydney Morning Herald,Saturday 6th March, 2010)

..... amid the graphs and tables illustrating the positive findings in the Australia Council for the Arts report More than Bums on Seats: Australian participation in the arts was some less palatable news: people with disabilities and migrants from non-English-speaking countries are being left behind.

The council's last similar survey was released in 1999. How far has access to the arts progressed for people with disabilities – one in five nationwide, or more than 4 million? "Not very far would be my summary," Australia's Disability Discrimination Commissioner, Graeme Innes, says. Read on ....

• Australia Council for the Arts report

ABC TV - The New Inventors ‘Access and Ability Special’

Wednesday 10th March on ABC1 at 8:00pm

Featuring inventions by, and for people with a disability, they will look at some of the ingenious ways inventors are helping to ensure everyone has equal access to life, work and fun.

To celebrate these important innovations, James O'Loughlin will be joined by a special panel of experts living with a disability: paralympian Kurt Fearnley, filmmaker and presenter Sofya Gollan, and Federal Discrimination Commissioner Graeme Innes.

The show will also include an Auslan sign language interpreter, Jemina Napier, translating for hearing impaired viewers throughout the program, a first for The New Inventors.

Summary of upcoming events, March - May

We've posted about a number of events recently, here is a quick recap of Down Syndrome NSW events coming up soon:

Seminars for families and professionals in Orange, NSW 11th - 13th March

T4-321: World Down Syndrome Day 21st March 2010

Dance Like Nobody's Watching, film screening, Sydney 22nd March

Enchanted Forest, Kids For Life 6th Annual Ball, 27th March

Scrapheap Adventure, to Wanaaring NSW, 3rd April

Seminars with Assoc. Prof Keith McVilly, Rosehill, 30th April - 1st May

Survey of people with disabilities dealing with legal services

If you have a disability and have been in contact with any of the services listed below in the last twelve months, you are invited to share your experiences as part of a study. The confidential feedback will help to improve these legal services for people with disabilities.

• Anti Discrimination Board
• Administrative Decisions Tribunal
• Law Access
• Local Court
• Office of the Protective Commissioner
• Public Trustee
• Registry of Births Deaths & Marriages
• Victims Services
  

When: The study is taking place during February and March. It will take about an hour of your time.
Where: A location close to your home will be organised for the interview.

Participants are welcome to bring an advocate to the interview. Participants will receive a $75 Myer voucher as a thank you for participating in the study. For more information or to register your interest, call Richard at Taverner Research on 1800 212 290 or email dsurvey@taverner.com.au

Source: Carers NSW e-Bulletin, February 2010, PWD

Draft Australian Curriculum - consultation online; a challenge from St Lucy's School

Draft Australian Curriculum documents in the learning areas of English, maths, science and history are now available for online consultation at the Australian Curriculum website: www.australiancurriculum.edu.au until 23 May 2010. You need to register via the website to access the documents.

One public information session is scheduled for NSW, on 25th March, at a venue to be confirmed: www.acara.edu.au/public_information_sessions.html

The Chairman of the Australian Curriculum Assessment and Reporting Authority (ACARA), Prof Barry McGaw, is scheduled to be a keynote speaker at the 2010 National Conference of the Australian Association for Special Education in Darwin in June. AASE is actively monitoring, commenting on and contributing to the development of the national curriculum, and has highlighted ACARA's own guiding principle that

"..... the curriculum should be based on the assumptions that all students can learn and that every student matters. It should set high standards and ensure that they apply to all young Australians while acknowledging the different rates at which students develop" (ACARA, The Shape of the Australian Curriculum, p. 8)

to ensure that it is not compromised.

* * * * * * * * * * * *

St Lucy's School at Wahroonga (in northern Sydney) has issued a flyer about their planned challenge to the Australian Government, providing this information:

The Federal Government has heralded a new era in Australian education, an Education Revolution. They have said nothing about children with disabilities.

Students and parents of St Lucy’s and other special schools,together with friends of children with disabilities, are travelling to Canberra to put this question to the nation’s leaders.

Join us in asking the government:

Are children with disabilities part of the Education Revolution?

Thursday 18 March 2010

11.00am Gather in Federation Mall in front of Old Parliament House, Canberra

12.00pm Walk from Old to New Parliament House

12.30pm Children gather into one group to sing ’We Are Australian’

1.00pm Lunch

1.30pm Fun activities for the children

3.00pm Home

To help us cater for the day, please let us know if you’ll be joining us – call St Lucy’s School on 02 9487 1277 or email karenn@stlucys.org.au

Library Thursdays: The words of people with Down syndrome

Communication difficulties and community perceptions often hamper the voice of people with Down syndrome. The Down Syndrome Association of Los Angeles is spreading some voices with its "21 quotes in 21 days by 21 people with Trisomy 21 on what it's like to have Down syndrome" as part of the celebration of World Down Syndrome Day on the 21st of March. The quotes start on the 1st of March but you can sign up for their mailing list here to receive them.

Many of our resources in the library have excerpts written by people with Down syndrome and there are several where they have the main voice. Bus Girl by Gretchen Josephson (Brookline Books, 1997) is a book of poems written over the course of several decades. Count us In: Growing up with Down syndrome (Harcourt, 1994, 2007) is the once ground-breaking book by 2 young men with Down syndrome now with an updated afterword. A Special Kind of Hero by Chris Burke (Doubleday, Authors Guild Backinprint.com, 1991, 2001) is the actor's life story. I Just Am: a story of Down syndrome awareness and tolerance by Bryan and Tom Lambke (Five Star, 2006) is cowritten by a young man and his father about life. And another book, The Eyes of Raymond Hu (Art Media Resources, Chicago, 1996) while not a written story, gives Raymond's voice through his paintings (one shown on the right) . There are films too--OK, Let's talk about me,(SBS, 2004) about a 17 year old's view on life. Also the film, Dance Like Nobody's Watching which is showing for World Down Syndrome Day.

I hope that we can hear more voices more often in the future.

If you'd like to borrow any of these resources or anything else from the library, just email.

Recent online newsletters

Accessible Arts, February 2010 - includes profiles of two young people with Down syndrome who have secured work placements in the arts.

People With Disability (PWD) E-Bulletin No 59, February 2010

Young Carers E-News, February 2010

Latest DS NSW online publications

Speak UP! Issue 36, Autumn 2010 is now available online here. Speak UP! is a newsletter by and for people with Down syndrome, from the UP! Club.

Down Syndrome NSW e-Update, March 2010 is now available online here. The e-Update is a monthly bulletin of events and short information items.

A list of items added to the Down Syndrome NSW library collection from December 2009 to February 2010 is now available here. Members can arrange loans by email, phone or in person. Contact the librarian at library@dsansw.org.au or phone 9841 4410

Chuckle Club - friendship group for children with Down syndrome

Activities have been scheduled for March through to August this year for the friendship group known as the Chuckle Club - an informal social group for families who have primary school aged children with Down syndrome and their siblings living in Western Sydney, Blue Mountains or Hawkesbury districts.

The main goal of this group is developing social skills and friendships in a relaxed environment. If you are interested in participating in any of the scheduled activities please contact the nominated coordinator for more information.

Click here to download the schedule March - August, 2010

Key player found for transient leukaemia seen more commonly in babies with Down syndrome

Between 5 and 10 percent of babies with Down syndrome develop a transient form of leukemia that usually resolves on its own. However, for reasons that haven't been clear, 20 to 30 percent of these babies progress to a more serious leukemia known as Down syndrome acute megakaryoblastic leukemia (DS-AMKL), which affects the blood progenitor cells that form red blood cells and platelets. Now, researchers at Children's Hospital Boston have found a gene regulator they believe to be a key player in DS-AMKL, advancing understanding of how the disease develops and how to treat it.

The study findings, published in the March 1 issue of Genes and Development, may also help in understanding other forms of leukemia, the researchers say. Click here to read the full text of the news release from Children's Hospital, Boston.

Citation:
Jan-Henning Klusmann, Zhe Li, Katarina Bahmer, Aliaksandra Maroz, Mia Lee Koch, Stephan Emmrich, Frank J. Godinho, Stuart H. Orkin, Dirk Reinhardt. miR-125b-2 is a potential oncomiR on human chromosome 21 in megakaryoblastic leukemia. Genes and Development March 1, 2010: 24(5)

The full text of the article is available free online from the journal's website, here, either as a web page or a .pdf file.

In defence of family carers, and of improvements in employment support for people with disbailities

Three letters of interest are published in today's Sydney Morning Herald - two in response to yesterday's story on ADHC's failure to support the RASAID families' plan for long term supported accommodation, and one defending improvements in support for people with disabilities seeking employment. Click here and scroll down to:

Great strides in work for disabled, from Peter Tanner
Caring families need our support from Emeritus Prof Trevor Parmenter and from Peter Bailey

Beware what you wish for in supported accommodation ......

This morning's Sydney Morning Herald reports on the stalling of Sydney parent group, RASAID's, plans for out of home accommodation for their 20 adult sons and daughters, after what appeared to be some progress made with Ageing, Disability and Home Care (NSW Department of Human Services). Under the current regulations, if ADHC support were forthcoming, the parent group would lose control of who could be accommodated - a classic Catch 22:

Housing scheme for disabled adults in doubt as minister backs down
Erik Jensen, Sydney Morning Herald, March 1, 2010

The report prompted this media release from RASAID this morning:

Lynch Lies and Plays Catch 22 With Ageing Carers of Intellectually Disabled
The parents of a group of intellectually disabled adults in Sydney’s Ryde area are horrified that Paul Lynch, the NSW Minister for Ageing, Disability and Home Care (ADHC), has denied he ever gave in-principal approval to their innovative plans for supported accommodation for their 20 sons and daughters.

According to an article in today’s Sydney Morning Herald, “Mr. Lynch told the Herald the plan would be considered once land was available. '… I did not give in principle support to the RASAID proposal, as the land has not been secured and there would be numerous other steps which would have to be undertaken.'”

He also denied signing his name in the air after he’d given Jenny Rollo, now President of RASAID, verbal support of their plans. Ms Rollo says there were several witnesses to the aerial signature, at least one of who is prepared to swear in a statutory declaration that her version of events is correct. The others are members of the NSW Labor Party or employed by Minister Lynch. Commenting on this “signature” to Ms Rollo and another RASAID mother on the day it occurred, Lynch’s aide said, “If Minister Lynch wants this to happen, it WILL happen.”

But worse than being called a liar, Ms Rollo is outraged that the minister says the group’s model would be considered once land is secured. “He’s set up a Catch-22 situation,” she says.

Land owned by the NSW Department of Health in the Ryde district was identified as being available to RASAID in early 2009. At a meeting on June 16th 2009 between senior bureaucrats from the NSW Department of Health, the NSW ADHC, RASAID and the NGOchosen to build the project, an acre of land was to be offered for this project.

“The senior bureaucrat from ADHC told us at that meeting that even if our cluster housing was built, there was no guarantee that all, or in fact that any of our children would go into it because of the department’s Vacancy Management Policy. The plans of the land were then removed from the table, literally and figuratively,” says Ms Rollo.

ADHC’s Vacancy Management Policy stipulates that the department decides who goes into what available beds in NSW, rendering RASAID’s plans for an intentional community for its adult children with intellectual disabilities impossible.

Undeterred, Ms Rollo and another RASAID mother wrote to Minister Lynch, asking for him to meet with them and to override ADHC’s policy to allow their proposal to go ahead. The minister refused a meeting and said, via his staff, “We have no further developments to advise RASAID on at the moment.”

On November 2nd last year, four months after the original meeting when the land was to be offered, Ms Rollo received confirmation via the ADHC that the Department of Health land was still available for their project.

“It beggars belief that he now says he’ll consider our proposal once land is secured. Land can’t be secured unless he makes an exception to his department’s policy. It is that alone that is preventing the land from being offered,” says Ms Rollo.

RASAID is calling on Premier Kristina Keneally to step in and remove the bureaucratic barriers that are preventing RASAID’s development from going ahead.

RASAID’s supported accommodation model falls within ADHC guidelines for a cluster development to house intellectually disabled people. The model proposes that RASAID’s sons and daughters live together within the Ryde area, with their friends, near their families, day programs and work placements. The current system for housing intellectually disabled adults who can no longer live with their ageing or dead parents is ad hoc. The state meets only 7% of supported accommodation needs of adults with intellectual disability.

RASAID members are in their 50s, 60s, 70s and 80s. The oldest parent is a single mother, aged 87, still caring for her 51 year old son.

For more information on RASAID and contact details: www.rasaid.org.au

"Give disabled the chance to show their work skills"

Three letters were published by the Sydney Morning Herald today, in reply to Adele Horin's weekend column urging that employers be made to look more seriously at employing people with disabilities. Click here and scroll down to the heading "Give disabled the chance to show their work skills" .

Positive behaviour support and friendships: 2 seminars with Keith McVilly

Down Syndrome NSW is pleased to announce two Sydney seminars with eminent behavioural psychologist, Associate Professor Keith McVilly, Principal Research Fellow in School of Psychology, Deakin University, Melbourne.

Both events will be be held at Rydges Hotel, 116 James Ruse Drive, Rosehill

1. Behaviour Management
Encouraging positive behaviour in your students with Down syndrome at school

9:00am - 3:00pm
Friday 30th April 2010
Cost: $132 per person (non members); $99 per person (DS NSW members)

2. That’s what friends are for..Supporting young people with Down syndrome to make and keep friends

9:30am- 3:30pm
Saturday 1st May 2010
Cost: $55 per person
(Funded by NSW Health, under the NSW Carers Program, and Down Syndrome NSW, as a component of the “All the Way” Project, 2007-2010)

Registrations close: 23rd April 2010
Click here for a detailed brochure and registration form for Keith McVilly seminars