Address details


Down Syndrome NSW
Level 6/410 Church St, North Parramatta
9am-5pm Monday - Thursday
T: 9841 444


Sunday, 11 March 2012

Other people's blogs ...

Some highlights of this week's reading around the blogosphere ...

10 yr old Stan's Dad, Steve Palmer reflects on what he's learned over the past decade on the BBC's OUCH blog.

Susan, mother to three young people with Down syndrome (and three others), spends a day with Jake, over on April Anecdotes.

Dave Hingsburger's contribution on International Women's Day ... A W.O.M.A.N. with Down syndrome.


And a new blog that is going on our 'must read' list:

The good Doctors Chicoine and McGuire from the Adult Down Syndrome Centre in Chicago have started a blog, giving us another way of benefitting from their excellent work.


Friday, 9 March 2012

Health of people with intellectual disability in Australia: radio interview

The Australian Association of Developmental Disability Medicine (AADDM) conference is being held in Sydney today (and yesterday).


Assoc Prof Julian Troller ( Department of Developmental Disability Neuropsychiatry, UNSW) talks to Radio Australia about why people with intellectual disability are not getting as good health care as most Australians, and what we need to do about it ... listen in online here.

Circles of support: All you need to know to get started and keep going!


Resourcing Families is running a practical workshop for families about the ‘how to’ of setting up,
running and maintaining a circle of support. Circles of support are an effective strategy for getting
more people involved in the life of a person with disability to support them in their life goals and
to have a lifestyle that suits them. This can be an enriching and empowering opportunity, as well
as an important strategy for keeping people safe into the future.

Nowra 2 April 2012 
South Hurstville 4 April 2012
Wollongong 3 April 2012 
Harbord 5 April 2012

The day is for families (mothers, fathers, adult brothers and sisters, other relatives) and friends of
people with developmental disability. It would be a great idea to bring any prospective circle
members with you. Families that include a young person with disability are encouraged to attend.

See the Resourcing Families website for more details about these events
or phone
Resourcing Families on 9869 7753 or 1800 774 764 (NSW non metro callers)

Thursday, 8 March 2012

International Women's Day

Today, 8th March, is International Women's Day ... what better way to join the celebrations than to share this glorious photo of  two young women with Down syndrome in Nepal, honouring their culture through dance?


Our thanks to Shila Thapa, President of the Down Syndrome Society of Nepal, and CEO of the Satyam Day Care Center for her photo. Since 2006, Shila and her colleagues have opened 5 day care centres for people with intellectual disabilities in Nepal.

Save 20% on See and Learn Speech kits until 31st March


Throughout March, Down Syndrome International (USA) is offering up to 20% off the price of their See and Learn Speech kits.


The discount code and link to the US DSE online store is here, in Frank Buckley's (CEO of DSE) blog post, 5th March 2012. Orders must be placed by 31st March.

Carers' Weekend Away: St George area carers


The Pole Depot Community Centre at Penshurst has asked us to circulate this information:


This experience may be an opportunity for you to take a break from your caring role and give you a chance to unwind and relax in an atmosphere of support and friendship.

..SHARED ACCOMMODATION.. Cost $50.00, lunches and drinks at your own expense

RSVP by Friday 6th April 
T (02) 9580 0688 F (02) 9580 4487 
www.poledepot.org

Assistance with Respite can be provided.

Wednesday, 7 March 2012

Celebrate World Down Syndrome Day with a T4321


The Australian Government’s response to the UN’s recognition of World Down Syndrome Day - 21st March -  from 2012 is here.

To celebrate, we are inviting each and every one of you to take part in this year’s T4321 event, by hosting a tea party in your community.


It’s as easy as contacting Priscilla on 02 9841 4444 or on priscilla@dsansw.org.au for your free event kit, and for some great tips on how to put on the party of the year!!!

You can also download a copy of the T4321 Event Kit here, as well as the T4321 Event Registration Form and the T4321 Sponsor Form. Or you can register for your event online here.

If you would like to make a donation in celebration of World Down Syndrome Day and to support the work of Down Syndrome NSW, you can make your donation by clicking
here
.

Down Syndrome NSW workshops: Hunter 28th - 30th March



Down Syndrome NSW staff will present four events for families and professionals in the Hunter region in late march.  Each of these events will be held at

Club Macquarie, 458 Lake Rd, Argenton
RSVP/Enquiries to Judy/Lynn on 9841 4401 or Siena on 9841 4411


1. Communication/Behaviour Workshop
A workshop for parents and family carers of a child with Down syndrome
7:00pm - 9:00pm, Wednesday 28th March 2012


2. New Parent’s Morning Tea

A workshop for parents who have a child with Down syndrome aged 0-2 years
9:30am-11:30am, Thursday 29th March
Click here to download the flyer


3. Early Childhood Update

A workshop for Early Childhood professionals working with children with Down syndrome aged 0-5 years
12:30-3:00pm, Thursday 29th March

Click here to download a flyer and registration form


4. Playing to Their Strengths - Newcastle
A workshop for teachers and school personnel working with students who have Down syndrome in Primary School.
9.30 am - 3.00 pm, Friday 30th March 2012
Enquiries: Down Syndrome NSW on 9841 4401 
or email workshops@dsansw.org.au


Tuesday, 6 March 2012

Half a world away, but so close ...

In this recent blog post for US peak body, The Arc, 21 year old Amberley Romo tells how she has gained a new perspective on her sister Caroline's experience of the world around her, that took a journey half-way round the world to be revealed ...

The first time I felt the ‘shut down’ moment I was trying to have a conversation in Chinese with my roommate. I got to the point where I just wanted to put my face in my hands and block her out. At that moment, I had an extreme sense of déjà vu ...  read on at The Arc Blog



Peer Support Program for 13 - 18 yr olds


Peckys Peer Support is a recreational program for adolescents with mild intellectual disabilities aged 13 - 18 years, located in western Sydney.

This program offers a variety of activities and provides a supported environment to meet new friends and see new sights.

Through recreation, Peer Support aims to create opportunities which encourage members to interact with peers, build new friendships and increase social experiences in a FUN environment.

Contact the Coordinator Jodie Caruana on 9688 3268 for more information.

Monday, 5 March 2012

World Down Syndrome Day website relaunched


A message from Andrew Boys, Director of Down Syndrome International, about the updated World Down Syndrome Day website:


Dear friends,

As most of you will know, 21 March is World Down Syndrome Day and Down Syndrome International is delighted to announce the re-launch of the official WDSD website:

The aim of this website is to create a single meeting place where everyone can share their experiences and advertise activities and events being organised around the world to raise awareness and celebrate the unique talents and abilities of people with Down syndrome worldwide on this day.

The new website not only enables you to register and receive updates about WDSD, it also enables you to UPLOAD DETAILS OF YOUR WDSD ACTIVITIES TO THE WDSD WEBSITE YOURSELVES. I explain below how to do this. Please note your registration and your uploads will all be subject to approval by this office and will go live after we have viewed them.

So here is how you can participate IN 2012:

  • Please first register here http://worlddownsyndromeday.org/user/register. In the “Registration Details” section of this form you can decide if you want to simply receive updates from the website or if you want to “Join In”. Please select “Join In” if you want to upload WDSD activities to the site.
  • You will receive an email saying your application for registration is pending. When we approve your account, you will receive another email with a link to set your own password. When you click on this link follow the instructions and you will have a WDSD account!
  • When you have an account you can Login to the site at any time. If you selected the “Join In” option for registration, you can then follow the instructions below to add content to the site. PLEASE NOTE YOU CAN CHANGE THE SETTINGS OF YOUR ACCOUNT AT ANY TIME BY CLICKING ON THE “EDIT” BUTTON AFTER YOU LOGIN.
  • There are 3 types of content:
1. WORLD EVENTS – These are events and activities happening on or around WDSD (21 March) which you can advertise with us BEFORE WDSD, just like the old website. Please go to http://www.worlddownsyndromeday.org/world, click on your “Continent”, then find your “Country” and click on it, then you will see “ADD A NEW EVENT” on the right hand side of the page. Click on this and follow the instructions on the form. You can add text, upload an image, upload a PDF attachment and include other information. PLEASE NOTE YOU MUST BE LOGGED IN TO THE WEBSITE TO ADD A NEW EVENT.

2. PLAN YOUR DAY – This is a new feature. We appeal to those of you in the WDSD community who are experienced in organising WDSD events to share your best practices with others. So in this section you can upload GUIDANCE information on types of events to help others to start new events and activities. You can set up a check list for example for a particular type of event. To participate please go to http://www.worlddownsyndromeday.org/plan-your-day, click on “ADD A NEW PLAN YOUR DAY” on the right hand side of the page, and follow the instructions on the form. You can add text, upload an image, upload a PDF attachment and include other information. PLEASE NOTE YOU MUST BE LOGGED IN TO THE WEBSITE TO ADD A NEW PLAN YOUR DAY.

3. YOUR STORIES – This is another new feature. We would like WDSD to be read about and discussed AFTER WDSD each year. So when 21 March is over, please help us to do this by posting YOUR STORIES and articles on the activities which took place and provide details of what happened, who was there, how it went, what people said about it etc. To participate please go to http://www.worlddownsyndromeday.org/your-stories, click on “ADD A NEW STORY” on the right hand side of the page, and follow the instructions on the form. You can add text, upload an image, upload a PDF attachment and include other information. PLEASE NOTE YOU MUST BE LOGGED IN TO THE WEBSITE TO ADD A NEW STORY.

PLEASE NOTE: WHEN YOU HAVE POSTED ONE OF THE ABOVE YOU WILL BE REDIRECTED TO ANOTHER PAGE WITH A MESSAGE. DO NOT WORRY, YOUR POST IS SIMPLY PENDING APPROVAL AND SHOULD GO LIVE WITHIN 24-48 HOURS.
This is a new system which we will all need to get used to. This may seem complicated but please follow my instructions and it will work fine. We have tested this thoroughly.

And I appeal to all of you to “JOIN IN” so that we can continue to grow WDSD as a global and inclusive celebration for people with Down syndrome, their families and their friends everywhere!

Many thanks

Andrew Boys

Hunter coffee mornings 2012


For further information, contact:
Joelene Rutherford 0439 606 134

Candy Connors - Liaison and Support DS NSW (Hunter)


Saturday, 3 March 2012

Supported Living Fund Proposals: Round 1 open until 23rd March


NSW Ageing, Disability and Home Care recently called for Expressions of Interest in funding packages from the Supported Living Fund.  Now the first round of the actual application process  is open.  You do not need to have submitted an EOI to make an application (called a Proposal) for a Supported Living Fund package.  Round 1 will close on 23rd March 2012.

There will be further rounds of applications later in 2012, and in 2013

For links to the application forms and further information about the process and support in completing the forms, visit the ADHC website here.


People eligible to receive a Supported Living Fund package will be required to meet the following criteria: 
  • Adults (18– 64 years with a disability as defined by the NSW Disability Services Act 1993   
  • are resident of NSW  
  • are interested in living in a ‘home of their own’, with a mix of informal and formal/paid support arrangements that are adequate and sustainable

Friday, 2 March 2012

Philosophers' claim over moral right to kill newborns sparks outrage

A paper written by two Melbourne philosophers, and published by the British Medical Journal publishing group has caused comment, debate and outrage around the world.  Julie Robotham wrote about it for the Sydney Morning Herald today, including a comment from Steve Clarke, CEO of Down Syndrome NSW:


Killing newborns is morally the same as abortion and should be permissible if the mother wishes it, Australian philosophers have argued in an article that has unleashed a firestorm of criticism and forced the British Medical Journal to defend its publication.

Alberto Giubilini, from Monash University, and Francesca Minerva, from the University of Melbourne, say a foetus and a newborn are equivalent in their lack of a sense of their own life and aspiration. They contend this justifies what they call ''after-birth abortion'' as long as it is painless, because the baby is not harmed by missing out on a life it cannot conceptualise.

About a third of infants with Down syndrome are not diagnosed prenatally, Drs Giubilini and Minerva say, and mothers of children with serious abnormalities should have the chance to end the child's life after, as well as before, birth.

But this should also extend to healthy infants, the pair argue in the BMJ group's Journal of Medical Ethics, because the interests of a mother who is unwilling to care for it outweigh a baby's claims.

The academics call an infant, like a foetus, only a ''potential person'', but they do not define the point at which it gains human status, saying this depends on the baby's degree of self-awareness and is a matter for neurologists and psychologists.
Julian Savulescu, the journal's editor, said the authors had received death threats since posting the article last week, via the publication's own website and online discussion forums.

His goal was ''not to present the Truth or promote some one moral view. It is to present well reasoned argument,'' wrote Professor Savulescu, from the University of Oxford. If others made a similarly refined case for recriminalising abortion he would also publish that.

''What is disturbing is not the arguments in this paper nor its publication in an ethics journal. It is the hostile, abusive, threatening responses that it has elicited … Proper academic discussion and freedom are under threat.''

Steve Clarke, the chief executive of the advocacy group Down Syndrome NSW, said the paper was ''very theoretical''.

''I don't think it does have any relevance or insight for the real world. It is so beyond our social mores and values that it is beyond the pale and I wouldn't want to dignify it with any further comment,'' he said.

Bernadette Tobin, the director of the Plunkett Centre for Ethics at St Vincent's & Mater Health and the Australian Catholic University, said the Melbourne academics should ''speak forthrightly'' and use the word infanticide if they wanted to persuade people that killing newborns and terminating pregnancies were equivalent.

Sydney Morning Herald, online edition (2nd March 2012)


Thursday, 1 March 2012

Library Thursday: a book review and other online reading


Book review


Pamela WilsonBellaOnline's Children with Special Needs editor, review of Adventures in the Mainstream - Coming of Age with Down Syndrome is available online:


Because every individual with Down syndrome is unique, and there is so much diversity among families, we have no reason to expect uniformity in attitudes or decisions from families or young adults with Down syndrome themselves. The book Adventures in the Mainstream - Coming of Age with Down Syndrome is the story of one family and one person with DS. This is a book that gives valuable insights to other parents, friends and extended family who have known no other person with Down syndrome. An added bonus is that we get to know Ned and his father ... read on at BellaOnline


Adventures in the Mainstream - Coming of Age with Down Syndrome is available for loan to members from the Down Syndrome NSW library.


More online reading


Two issues of the DSA (UK) Journal (123 and 124, both published in 2011) are now freely available online here.  And two issues the DSA (UK) magazone for people with Down syndrome, Down 2 earth 
are now freely available online here.


The February 2012 issue of Down Syndrome News, published by the National Down Syndrome Congress (in Atlanta) is now online here.


US magazine Entertainment Weekly last week published an 8 page article on Actors with Down syndrome - the National Down Syndrome Society in New York has made it available online here.


Wednesday, 29 February 2012

Not quite Wordless Wednesday: meeting the Prime Minister


Tara Elliffe was pleased to meet the Prime Minister, Julia Gillard when she visited FRANS in Croydon, earlier this month, and to present her with flowers.


The local press reported that "... emotions ran high as the struggles of inner west families living with disability were heard ...." and that the PM  " ... hoped to change that sentiment with the prospect of the National Disability Insurance Scheme (NDIS)."  The transcript odf the Prime Minister's doorstep interview is here.

Arts Activated Conference, Sydney 2012: call for papers


Accessible Arts is calling for proposals for papers, performances or workshops that address the 2012 Arts Activated Conference theme and topics. Other topic ideas are welcome, but all proposals must clearly show how they address the conference theme. Submissions can be in in written, audio or video formats. Proposals from people with disability or those that involve people with disability are encouraged. 
All proposals must be received by Accessible Arts by close of business Monday 16 April 2012.
Further information about the submission process is here.
Desire and Destination30 – 31 October 2012The Concourse, Sydney 409 Victoria Avenue Chatswood NSW
The third Arts Activated Conference presents an interactive exploration of access to the Arts as a practical outcome of Australian cultural life. Artists and advocates, practitioners and producers, arts administrators and policy-makers will connect, debate and influence the vision of full social inclusion in all areas of the Arts nationwide.

Tuesday, 28 February 2012

Gillard Makes NDIS a Priority After Leadership Victory

From ProBono News, today: 

Prime Minister Julia Gillard has pledged to make the National Disability Insurance Scheme, NDIS, a priority following her resounding leadership victory in Canberra yesterday.
After the 71 to 31 vote win against Kevin Rudd, Gillard told the media that putting the framework in place for a National Disability Insurance Scheme as one of her main goals.
"As we build great new vehicles of fairness, like a National Disability Insurance Scheme, I'm impatient to get on with that work," Gillard said. "I will be getting on with that work today. We haven't got a day to lose."
However, the Prime Minister conceded that while she is very committed to building a National Disability Insurance Scheme she said she is not underestimating the complexity of the funding arrangements around the scheme ... read on here.


March 2012 events recap

March is usually busy, in the lead up to World Down Syndrome Day - this year the calendar looks especially full for both metropolitan and regional NSW.  Here's a recap of links to the events we have listed so far, for March:


World Down Syndrome Day
21st March 
Worldwide


UN Conference 
21st March 
New York


Down Syndrome NSW events:

T4321: across NSW

Blue Mountains parents morning tea
12th March

Playing to their strengths (at school) 
Seminar for teachers and school personnel
23rd March
Rosehill



Other organisations' events:

Drawn to the line
Art exhibition
until 10th March 
Goulburn, NSW

Create It! Art Classes
starts 3rd March 
Casula


How to Make and Keep Friends 
Down Syndrome Program, Boston Children's Hospital
6th March (then available online)

Supported Living seminars
(Family Advocacy and NSW CID)
1st - 7th March
Regional NSW


Trevor Parmenter Lecture
Prof Tony Holland
7th March 
Sydney

Australian Association of Developmental Disability Medicine Conference
8th - 9th March 
Sydney


Emergency First Aid for Carers course
7th - 8th March 
Hunter (Maitland)

More Choice and Control
Resourcing Families
9th March
West Ryde

Supported Living seinar for Arabic speaking community workers
Family Advocacy and Arab Council Australia
8th March
Canterbury, NSW


The how and why of school inclusion
Family Advocacy
13th - 16th March
Newcastle, Sydney, Wollongong

Healthier Lives seminar
NSW CID
15th March 
Armidale, NSW

Towards a good life for people with learning disabilities
Public lecture
21st March 
University of NSW 

After school - what then?
Family Advocacy
Throughout March 
Across NSW


Relationships and Private Stuff 
Workshops
Throughout March 
Sydney and regional NSW

For information about arts events across NSW, visit Accessible Arts.

Learning Links 2012 workshops calendar

The Learning Links 2012 calendar of workshops for professionals and parents is available to download.

Each workshop description clearly indicates the intended audience. topics range from sessions on specific disorders (including Down syndrome) to more general issues about schooling, behaviour and development in children with disabilities, and support for families.

Workshops are often available at several venues across Sydney, and on several dates, to accommodate a wide audience.

Learning Links is non-profit community based organisation providing services designed to "... enable children with disabilities and learning support needs, and their families and communities, to realise their individual potential."