Address details

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

Sunday, 30 January 2011

Short and Sweet Theatre Festival, Sydney: you can support Gerard

Gerard O'Dwyer performed in the play Beautiful as part of  Crash Test Drama, a script development competition.  He and Ashley (the other actor) won their heat, picking up best script from both the judges and audience vote. They then went onto the Crash Test Drama Grand Final in early December. The play did not gain a place, however, it was invited to perform as part of the Short and Sweet Theatre Festival which is held annually in Sydney. It is known as the largest short play festival in the world!

It would be great if others can support Gerard by coming along to this play.

Click here for more information about Short and Sweet Theatre Festival.

For all tickets go this link.  The play Gerard is in is called Beautiful, and is in Week 8, 23rd to 27th February.

Best wishes, Gerard.

Gerard and Maria back on TV: carecarers campaign

The carecareers TV campaign resumes today on various channels including SBS, Channel 9 and Channel 10 in metro NSW, and on Channel 7 and Channel 10 in regional NSW. The campaign will also have profile on those networks’ various digital offerings including Go! ONE, 7TWO, 7MATE and 11.

Watch out for sightings of Gerard O'Dwyer and Maria Short - the longer version of their story is featured here on the carecareers website.

A late update on Gerard and Maria (12/2/2011): the carecareers blog features a Gerard and Maria page!

Saturday, 29 January 2011

Billy Schulz is "an old, old man" - he says

We've blogged about Billy Schulz (Grown Man Now) before, and just wanted to let you know that Billy is celebrating a birthday.  His brother Tom has made him a video tribute that goes beyond the usual collage, and Billy gives some clues to his age this birthday.

You can also follow Billy, his mother Dr Jane Schulz and Grown Man Now thoughts and happenings on Facebook.

Friday, 28 January 2011

You Tube: interview with Guy and Esme and family members

Some video of a recent interview newly married Guy and Esme gave on UK TV show This Morning can now be found linked from the post about their wedding.

A very timely blog about school and toilet training

As NSW students and their families prepare for the new school year, this blog post at Practical Wisdom: Phronesis could be very timely for those whose enrolment has been not all been about education and learning. The ever-practical Joan Medlen puts arguments about what toileting should mean to where a child goes to school firmly in their place: into the responsibility of those whose job it is to support the student.

If toilet training and school has not been an issue for you and your child, you don't need to read it.  If it has, you might well find yourself applauding.

On the other hand, the wisdom of this post is in its generalisation to other discussions about accommodating needs.

Thursday, 27 January 2011

Interview with Simon McKeon, Australian of the Year

In 2011, Australians with disabilities have two very prominent advocates in the Australian of the Year, Simon McKeon and the Senior Australian of the Year, Prof Ron McCallum.  We anticipate hearing much more from both of them.

ABC Radio interviewed Simon McKeon yesterday, to mark Australia Day.  In a wide ranging discussion, he talked with  Jon Faine about his role as primary carer for his older sister who has an intellectual disability, his activism for a National Disability Insurance Scheme, and how he might use his position this year as a platform to promote the interests of people with disabilities, among his other interests. 

The interview is nearly 30 minutes (not all of it about disability), and the file is large - we recommend downloading the file to your computer before listening unless you have very fast broadband access.

'Inspirational' couple's big wedding delights their families

Our Facebook editor has alerted us to this lovely story from the UK about the October 2010 wedding of  Guy and Esme, a couple with Down Syndrome  - look out for Esme's Dad's remarks in the comments section.

Apparently there is video online, but we have had difficulty with the links ... we'll keep trying, and if you can help, let us know.

27/01/2011 And here is some video of Guy and Esme being interviewed on UK TV show, This Morning, just a few days ago (thanks to DSA UK for the link):

Wednesday, 26 January 2011

Every Australian Counts: new NDIS campaign website launched

Another positive strike for advocacy for Australians with disabilities is the launch today of the new NDIS campaign website.  Here is the launch message from the NDIS team: 

Our New Campaign Launch

Thank you very much for your previous support of the campaign for a National Disability Insurance Scheme. To launch the next phase of our campaign, we have created a new website - Every Australian Counts.

On the website five people with a disability have shared their stories about how an NDIS could change their lives. You can also find other information about the difference an NDIS would make in the lives of people with a disability, their families and carers in this country.

People like Robert and Mary, who hope that if we had a NDIS they would no longer have to beg for services and would have a better quality of life.

On our new site, you’ll find blogs from our State Campaign Co-ordinators telling you what’s happening in the campaign in each state, and listings for news and events taking place in your area.

To launch the new site we would like all our existing supporters to visit and take the first action and sign our on line petition Count Me In. We hope you will soon be joined by many others!

The time for change has come. We ask you to take action today and make every Australian count.

Thank you,
The NDIS team

Senior Australian of the Year - Prof Ron McCallum

From the Australian of the Year Awards - 2011 website:

"The Senior Australian of the Year 2011 is equal rights campaigner Professor Ron McCallum AO of Artarmon, NSW. Professor McCallum is the first totally blind person to have been appointed to a full professorship at an Australian university. Professor McCallum was the foundation Professor in Industrial Law at the University of Sydney, and from 2002, he served five years as Dean of Law. He has fervently pursued equal rights for working people across the globe and was the inaugural President of the Australian Labour Law Association from 2001 to 2009. He is currently Chair of Radio for the Print Handicapped of New South Wales Co-operative. The organisation operates radio 2RPH, which reads out newspapers and magazines over the air for blind and other print handicapped listeners. He is also one of two Deputy Chairs of Vision Australia, and one of 12 members of the first monitoring committee for the United Nations Convention on the Rights of Persons with Disabilities. He was appointed inaugural Rapporteur of this committee and is now the Chair. Ron has also recently been appointed to the Federal Government’s National People with Disabilities and Carers Council.

Ron is a leading light in the community for people with a disability, working for equality among all Australians."

Report of acceptance speech - Sydney Morning Herald

SBS World News Australia

Tuesday, 25 January 2011

Rozelle Neighbourhood Centre: respite and recreation vacancies

The Rozelle Neighbourhood Centre's Weekend Respite and Recreation program has some vacancies in their Saturday Group.

Current vacancies are available for people with a mild to moderate intellectual disability who live in the Inner West, aged 14 – 28.  The group usually which runs from 9.30 am to 4.00 pm on Saturdays.

Program participants currently engage in activities like bowling, karaoke, art, dance and drama workshops, lunching around Sydney and visiting places like galleries, museums and other activities that group members express interest in.

Enquiries, brochure and referrals: Sue Johnson, 9555 8988 extension 2

Creative Classes with people with a disability in 2011: Rozelle Neighbourhood Centre

Classes starting 7th February 2011!

Rozelle Neighbourhood Centre runs a variety of creative leisure classes for people with intellectual disabilities.

The program is open to people with all levels of ability. All classes are tutored by arts professionals and assisted by a trained support worker.

Creative Arts
Colour, tactile experience, art, movement, sound and rhythm.
When: Monday evenings 5.45-7.15pm
Who: This class is open to people of all levels of ability. Ages 18+

Drumming, singing, improvisation, directing music, group work and solo work. Our music class is popular with people of all levels of ability.
When: Monday night 7.30-8.45pm
Who: This class is open to people of all levels of ability. Ages 18+

Drama - Ever After Theatre Company
Drama skills, voice work, movement, character work, play building and performance making.
When: Tuesdays 5-6.30pm
Who: This group is suitable for people who have some experience with drama. Ages 15+

Drama – Leisure Options
Movement, voice, drama skills exercises, story building, character work and play-making. Absolute beginners to drama welcome.
When: Tuesdays 6.30-8pm
Who: Ages 18+

General information
When: Classes are run in 4 eight week terms per year.
Where: Rozelle Neighbourhood Centre, 665A Darling St, Rozelle.
Who: People with all levels of ability.

Contact: Sue Johnston on tel: (02) 9555 8988 or email:  

Access: Accessible venue

Cost per term:
1 x class $70
2 x classes $110
3 x classes $130

Note: access to classes is dependent on available space.
For more information, visit the website

Leisure Options is Funded by Ageing, Disability and Home Care, Department of Human Services NSW
Ever After is supported by Swiss Re, Community support and project specific sponsors.

Punky cartoon to air in Ireland

The Irish cartoon, Punky that we posted about last September is about to launch on TV.  Aimee Richardson, who voices the child character who has Down syndrome was a guest on Ireland's prime time Saturday Show last weekend. Blogger Nick gives his response to the interview, and more information about both Aimee and Punky here.

It has been reported that the cartoon had attracted interest from Australia - we'll keep our ear to the ground, and if you see anything about it being broadcast here, please let us know.

Sunday, 23 January 2011

Nice story for a quiet summer Sunday

Here's a nice story about a man with Down syndrome who is a big Bon Jovi fan, a fortieth birthday, and the follow up that might see his dream to meet the band realised.

Saturday, 22 January 2011

Response to latest news on non-invasive prenatal diagnostic testing

Dr Brian Skotko, Clinical Genetics Fellow, Children’s Hospital Boston Down Syndrome Program, has responded to the UK/Hong Kong research into non-invasive prenatal diagnostic testing reported last week, with a call to consider the broad range of questions such developments pose.

Friday, 21 January 2011

Critical link found between Down syndrome and Alzheimer's disease

Researchers at the University of British Columbia and Vancouver Coastal Health Research Institute have discovered that the genetic mechanism which destroys brain cells is responsible for early development of Alzheimer's Disease in people with Down syndrome, and for development of Alzheimer's Disease in the general population – providing a potential new target for drugs that could forestall dementia in people with either condition.

The research, led by Dr. Weihong Song, Canada Research Chair in Alzheimer's Disease and a professor of psychiatry in the UBC Faculty of Medicine, found that excessive production of a protein, called Regulator of Calcineurin 1 (RCAN1), sets in motion a chain reaction that kills neurons in the hippocampus and cortex in people with Down Syndrome and Alzheimer's Disease. The findings were published online recently in the Journal of Biological Chemistry (the full text of the research paper is available online).

But now that the culprit gene and protein have been identified, "we can develop therapies that interfere with the gene's ability to produce that protein, and hopefully short-circuit the destruction of brain cells," Dr. Song says.

Thursday, 20 January 2011

Library Thursday: invitation to review

Would you like to review the new Woodbine House publication, Kitchen Classroom, by Gabrielle Kaplan-Mayer ? 

Down Syndrome NSW members are invited to contact our office to borrow this new acquisition, be the first to trial it and write a short review: or 9841 4444

Interested in international swimming competition?

The Down Syndrome Down Under Swimming Organisation will run a Down Syndrome Swimming National Meet in Noosa 24/25th September 2011.

Please put it  it in your diary now, and start preparing!

For more information please contact the NSW Rep: Sarah Harvey 9440 1631 (bh) or see

Wednesday, 19 January 2011

Acceptance performance workshops with Tracie Sammut: start 5th February 2011

Acceptance is a series of performance workshops for people with and without mild intellectual disabilities led by tutor Tracie Sammut, at Australian Theatre for Young People

Join tutor Tracie Sammut (GP, Home and Away) plus a variety of guest tutors who are all industry professionals for this mixed bag of drama goodies on offer in Semester 1.

This exciting new atyp ensemble is for people with and without mild intellectual disabilities aged 16-26 interested in learning new skills, building confidence, and making new friends.

In Term 1 we will explore unique dance styles (including modern ballet), theatresports, contact improvisation, storytelling and voice work. During Term 2 we will be devising a performance for inclusion with the end of semester performances. These workshops will be high energy and lots of fun, so bring it on.

When: Semester 1 starting 5 February - 2 July 2011, every Saturday at 12:30pm - 3:30pm.

Where: Australian Theatre for Young People, Studio 1, The Wharf Walsh Bay NSW 2000

Who: Young people 16-26 years old

Cost: $240 (Semester 1)

Contact: Australian Theatre for Young People: 02 9270 2400

Access: Accessible venue and amenities.

Tuesday, 18 January 2011

Greater Expectations: pre-launch special offer on new book

Greater Expectations: living with Down syndrome in the 21st century is a new book by Perth historian, Jan Gothard. Jan is also the mother of a young woman with Down syndrome, and has been a prominent activist in debates about immigration and people with disabilities. Greater Expectations will be launched on World Down Syndrome Day, 21st March 2011.

Author royalties will go to Down Syndrome Association of Western Australia.

You can take advantage now of a pre-launch offer: $25 per book plus free postage Australia-wide, for orders placed before 20th March.  Click here to download an order form for this offer (available to Australian residents only).

For more information about the book, and about Jan Gothard, visit the website of the publisher, Fremantle Press.

Monday, 17 January 2011

Australian early Intervention for children with disability initiative (Better Start)

On 28 July 2010, the Australian Government announced $122 million in funding over four years for eligible children up to fifteen years of age with disabilities that affect their development.

From 1 July 2011, eligible children diagnosed with a number of specific disabilities, including Down syndrome, will have access to funding and Medicare rebates under the Better Start Early Intervention for Children with Disability initiative.

More information is available from the FAHCSIA website, under these headings:

What are the components of this initiative?
Support for families with young children
Support for families with older children
When will funding be available?
Further information

Saturday, 15 January 2011

Black Balloon: ABC TV 1 Sunday 16th January 8.30 pm

ABC TV 1 is screening the award winning 2008 Australian movie Black Balloon tomorrow, Sunday 16th January, at 8.30 pm. 

Family life is seen from the point of view of a teenage boy whose brother has autism.

A review and a trailer can be seen here.

Friday, 14 January 2011

A new report on non-invasive prenatal testing

A number of techniques are being investigated internationally to provide a non-invasive diagnostic prenatal test for fetal Down syndrome. News reports have appeared around the world over the last couple of days about a new study of a non-invasive diagnostic (maternal blood) test being developed by a collaboration between a London and Hong Kong based research team. 

The focus of this paper is on the reduction of invasive tests (amniocentesis and chorionic villus sampling) and their associated risks that will result from reliable, readily available non-invasive testing.  The researchers do not claim 100% accuracy in diagnosing Down syndrome with their technique yet (it is in the high 90s and will increase), and predict that clinical implementation is some years away.
The ethical implications of such developments have been debated since they first surfaced about three years ago.  You can follow some of the developments through posting in this blog by following the Prenatal Testing and Prenatal Diagnosis tags.

Thursday, 13 January 2011

Cole Classic: swimmers supporting Down Syndrome NSW

You might have noticed a few newspaper and magazine articles about the recent growth in popularity of ocean swimming races up and down the NSW coast.  The Cole Classic has become one of the most popular events, and many competitors take the opportunity to raise funds for charities.

The 2011 Cole Classic is scheduled for Sunday 6th February, from Shelly to Manly Beach, and two generous swimmers are signing up sponsors for Down Syndrome NSW, through Everyday Hero pages:

James and Mark

Thank you both, congratulations on your efforts, and all the best for the swim! The rest of us can help the Herometers tick over.

Library Thursdays: Getting started!!! Using Visual Systems to promote Play

Getting Started: Using visual systems to promote communication by Dolly Bhargava, produced by Carson Street School in Perth, is a great guide to using visuals with people with Down syndrome and other visual learners. We have blogged about it previously.

Bhargava has now produced a second title: Getting Started: Using visual systems to promote play. It discusses play skills, sensory integration, interacting while playing, the play environment, types of play (solitary, parallel, unoccupied, onlooker, associative, cooperative, imaginative) and how to encourage play. Examples, visual systems and suggested activities are included.

Both titles and the accompanying videos are now available online from the Carson Street
School website.

These booklets can also be ordered in hardcopy from Carson Street School and will be available to borrow from the Down Syndrome NSW Library.

To borrow anything else from the library, just call or email.

Wednesday, 12 January 2011

Hanen Program information evening: February 2011, Inner West (Sydney)

Do you have a child with a language delay?
Do you have a child with Autism Spectrum Disorder?
Are you interested in learning more about the Hanen Parent Programs® – courses that help parents learn strategies to assist their child’s communication development.

A FREE Information Evening discussing 3 of the Hanen Parent Programs®

It Takes Two To Talk®
More Than Words®

is being held on Thursday 17th February 2011 in Concord at 7 p.m. – venue to be advised.

The evening is being hosted by Heather Craven Certified Hanen Speech Pathologist.Parents can come along and hear about the programs and register their interest in attending a program during 2011.

For more information about the work of the Hanen Centre and the programs go to
For more information about Heather Craven go to 
To register your interest email:  or call 0418 629 028

Call for immigration cases relating to people with disability applying for residence in Australia or refugee protection

From the National Ethnic Disability Alliance:
We need your help – deadline 31 January 2011. This call is distributed on behalf of the following organisations:

· Australian Federation of Disability Organisations AFDO
· Canberra Multicultural Community Forum
· Federation of Ethnic Community Councils of Australia FECCA
· National Ethnic Disability Alliance NEDA
· People with Disability Australia PWDA
· Settlement Council of Australia

The above organisations met with Minister for Immigration and Citizenship, Chris Bowen, in mid November 2010 to discuss the report and recommendations of the Joint Standing Committee on Migration Inquiry into migration with disability. The meeting demonstrated that there is a window of opportunity to convince the Government to change the current process and parameters for assessing people with disability when applying for migration to Australia or refugee protection.
We now need to present the Government with as many cases as possible – those that have been rejected on the basis of the applicant with disability and those with a member of the family with disability.
We also want to hear about the cases that you know about where the application has not yet been lodged, i.e. prior to rejection. All cases require consent from the applicant.

The information can be sent to  where the information will be collated and passed on to the Minister’s office. This call is open until 31 January 2011. For any queries contact Sibylle on 0407 878 933

Source:  NCOSS Ageing & Disability Update 5 January 2011

Tuesday, 11 January 2011

Beth's adventure

Beth Hull, from Sydney, had an unexpected adventure while on holiday in Perth a few days ago.  Her friends will be pleased to know that she is okay, as reported by both newspapers and TV in Perth.  This report appeared in the local press, describing her rescue while sea kayaking. We hope the rest of your holiday is a little less exciting.

Ty Belnap is a busy man

Here is a good story to start the year, from Queensland's Sunshine Coast, and a new movie, Just Like U, to look out for in March 2011. Ty Belnap, 32, is indeed a busy man.

Central Coast Community College: social and recreational courses for adults with a disability

Central Coast Community College is running social and recreational courses for adults with a disability at various locations across the Central Coast. Courses focus on enjoyment, increasing self confidence, discovering personal strengths and building friendships. Funding provides for courses over a two year pilot.

We are currently taking enrolments for the following courses for 2011:

Dance & Movement
Thursdays 6:00pm To 9:00pm At Peninsula Community Centre, Woy Woy

Mondays 5:45pm to 8:45pm at Oasis Youth Centre, Wyong

Thursdays 6:00pm to 9:00pm at Nth Gosford Learning Centre

Art & Craft
Saturdays 12:30pm to 4:30pm at Peninsula Community Centre, Woy Woy

Art & Craft
Saturdays 12:30pm to 4:30pm at Glenvale School Nth Entrance Campus

Music – course details currently being finalised

Sport & Healthy Living – course details currently being finalised

These free courses have eligibility criteria, and are funded for adults with a disability living in the Gosford or Wyong LGA who live in the community and have an unpaid carer. Unpaid carers include people who are receiving a carer’s allowance.

Students do not pay a course fee, however for courses with consumable ingredients/materials there is a minimal payment required to contribute to the cost of the materials.

Ongoing enrolments: enquiries and enrolment applications to Jean Ardley or Hazel Gibbons at Central Coast Community College – 4348 4300

Monday, 10 January 2011

Happy New Year - welcome to a new year of blogging for information and support

Down Syndrome NSW is (mostly) back from holidays, and getting ready for a busy 2011. 

If you are still on your summer break - enjoy it, and send us your photos and stories.

If you are affected by the recent and current flooding we hope you are drying out.

What's in the diary for 2011?  Some well established, regular events, and some new ones, such as:
  • details and fliers for our upcoming seminars and workshops will be posted this week - we'll be starting off with a new event for families and carers of older people with Down syndrome on 26th February.  Events are planned for families and professionals, including teachers and support personnel early in the new school year
  • the 2011Scrapheap Adventure Ride is scheduled to reach Cameron Corner on Easter Saturday, 23rd April.  You can now follow along on Facebook, too (there's a permanent link in the right hand column)
  • World Down Syndrome Day will be celebrated on 21st March 2011
A few 2011 DS NSW calendars are available for purchase if you still need one (or more) - contact Angela at DS NSW on 9841 4409, or to order, or click here.

Now to catch up with what's new, and back to regular blogging ....