Address details


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


Monday, 4 August 2014

Responses to the story of baby Gammy

There have been many media reports and discussions around Australia and internationally over the last few days. The story of what actually happened is still emerging, but aspects are clear-cut (Gammy, who has Down syndrome, a heart condition and a twin, was left in Thailand). These are just some of the more considered responses we have read (see this post from Friday, too):

We're the family they didn't want to be
Catia Malaquias, Australian Women's Weekly, 4th August 2014
... Gammy's story stirred up so many emotions in me that I found it hard to think about much else throughout the day. The situation is now unclear as the alleged parents have claimed they didn't know about Gammy while the surrogate mother says that they did. But if the story of Gammy's abandonment is true, including reports that it is only one of many such tragedies, it is shocking to think that in some ways we are the type of family that those parents didn’t want to be ...

Because not doing it is harder
Leticia Keighley, Embracing Wade, 1st August 2014
... How is it that difference and disability is so feared and so misunderstood that getting on a plane and flying away, leaving your own child with a woman who cannot care for him to the extent that he may well die….is actually the preferred option? ...

Which is the harder choice after a prenatal diagnosis: continuing or terminating?
Mark Leach, Down Syndrome Prenatal Testing, 1st August 2014
... I took as a given that most people would view terminating a pregnancy following a prenatal diagnosis of Down syndrome as still a hard choice, but not as hard as raising a child with Down syndrome. No doubt, that is the analysis done by parents who do choose to terminate. But, I think Keighley makes a very good point: that choosing to not be there for your child is actually the harder choice ...

Latest additions to 'Events' pages

Down Syndrome NSW events

Easy English Workshop
Down Syndrome NSW workshop with Catherine Basterfield, Access Easy English
Tuesday 12th August 2014 - Parramatta

DS NSW Trivia Night 2014
30th August 2014 - Five Dock
 (note change of date)

Other 2014 events

PWDA Royal Commission Disability Support Project: Forum 
Commissioner Robert Fitzgerald will provide an overview of the Royal Commission into Institutional Responses to Child Sexual Abuse and answer questions. This forum will explain the processes and work of the Royal Commission to people with disability, their families, friends, supporters, and organisations. It will explore the various ways that children and adults with disability can participate in the Royal Commission, especially through telling their own story of sexual abuse in an institutional setting 
Date: Monday 11 August 2014Time: 11.00am-12.30pm
Location: York Conference and Function Centre (Bowlers Club), Bass Suites,
Level 2, 99 York Street, Sydney NSW 2000 
RSVP: by Friday 8 August email to stakeholders@childabuseroyalcommission.gov.au
Please indicate if you have any participation or access needs, such as an interpreter. 
For more information, please contact Davina Dressler by calling (02) 8282 3885, or on email stakeholders@childabuseroyalcommission.gov.au
 Source: PWDA E-Bulletin, # 92, July 2014

Tabiss - Sibworks Workshop
6 week program for 8-12 year olds who have a sibling with an intellectual disability. Enquiries: tabiss@interactionservices.org
Starts 3 September 2014 - Castle Hill

Nepean Disability Expo
Brings together consumers, service providers and businesses and aims to enhance the lives of people with a disability. 
12th -13th September 2014 - Penrith
2014 Belonging Matters conference - for people interested in authentic service transformation
11th - 12th September 2014 - Melbourne

The Right Foot dance workshops 
Presented by DirtyFeet in partnership with Bankstown Arts Centre. FREE contemporary dance workshops for young people aged 14-26 with and without disability. Bookings essential.
Saturday 13 and Sunday 14 September 2014
Saturday 20 and Sunday 21 September 2014

Bankstown 

2014 SPARK Festival
For people with a disability to find their voice through the creative outlets of music, dance, art and performance.
21 - 24 October 2014 - Stanwell Tops (NSW)

Friday, 1 August 2014

The heartbreak of low expectations

Down Syndrome Australia (DSA) was greatly saddened to read the story of baby Gammy in today’s Fairfax media: Australian couple leaves Down syndrome baby with Thai surrogate.

“Our primary concern is for the wellbeing of this little boy and his family. In Australia we are fortunate that the additional health conditions often associated with Down syndrome are routinely managed through our healthcare system – something which is clearly not accessible from a village in Thailand,” said Down Syndrome Australia CEO Catherine McAlpine.

“We very much hope that the pro-bono reach of Australian hospitals and their partner charitable organisations will be available to assist in this heartbreaking situation. We are currently examining ways we can work with them to do so.

“In Australia life outcomes have never been better for people with Down syndrome and their families. Advcances in health care, early intervention and education have made a tremendous difference to the lives of people with Down syndrome.

“There remain however many barriers to ensuring people with Down syndrome have the opportunity to reach their full potential. Low expectations and lack of understanding mean that Australian children with Down syndrome still have trouble accessing mainstream education and adults with Down syndrome struggle to obtain jobs.

“For many people with Down syndrome the biggest challenge they face is the stereotyping and discrimination that follow from these negative attitudes and low expectations.

“Everyone in the Down syndrome community is heartbroken to see those attitudes played out with such devastating consequences for baby Gammy and his family.

“We will look at ways we can partner with other organisations to help this little boy and his family.

“It is a sad reminder to us of just how far we have to go to in changing attitudes to ensure people with Down syndrome can enjoy the same rights and opportunities as everyone else in the community. We have made great progress in recent times but there is still so much to do.”

Down Syndrome NSW response to media reports (1st August, 2014:
Executive Director of Down Syndrome NSW, Tracylee Arestides, has formulated the following brief response to media reports regarding baby Gammy. 
DS NSW is greatly saddened that baby Gammy's biological parents may have made the decision to abandon him based on the fact he has Down syndrome. 
We are looking at ways to help Gammy access the necessary health care he needs. 
We would also encourage people to support Gammy's Thai birth mother Pattharamon Janbuaand and her family who are caring for Gammy and bringing him up. 
We have had advice from Thailand that the GoFundraise campaign to support Gammy's surgery and his family is legitimate, however we are not in a position to make the decision for people to support Gammy in this way. We encourage our members to make their own enquiries and decisions.

Weekend reading and viewing: 2nd - 3rd August 2014





VATTA (Canadian Down Syndrome Society), 28th July 2014. 
Have you ever wondered what prenatal testing means to people with Down syndrome? A group of nine adults with Down syndrome want to share their overlooked perspective on this topic, in the film What Prenatal Testing Means To Me, available to watch on the Canadian Down Syndrome Society’s website. 
The film stars VATTA (Voices At The Table Advocacy), the Canadian Down Syndrome Society’s self-advocate-led steering committee. These remarkable adults, ranging in ages 22 to 43, reflect on their hopes and fears for the future of Down syndrome in Canada and around the world. 
Prenatal testing is a complex and controversial subject. VATTA’s view is simple: If people have fair and balanced information about Down syndrome, and take the time to know and learn more about people with Down syndrome, they will be able to make a better choice for themselves and their families. VATTA wants everyone to “See the Ability” and not believe misconceptions or fears about Down syndrome. 
The film was originally presented as a session at the 2014 Canadian Down Syndrome Conference in response to a growing number of concerns by parents and expectant parents regarding prenatal testing. 
VATTA’s mission is to help all Canadians “See the ability.” VATTA helps self-advocates use their voice and stand up for what they believe in. VATTA has been part of the Canadian Down Syndrome Society since 2005.

Gillian Marchenko, 8th July 2014
... Polly’s good moments resoundingly beat out her bad. Oh, of course she is human; mean and selfish and sneaky. “Polly, are your toys cleaned up?” “Yes,” she lies, happily running on to her next activity. But also, there’s this: she is a bell that rings daily. She was made to exude sunshine. She does her job well ...

What is the risk of not having a great life?
Stay Up Late, 29th July 2014
... These sessions were all built around talking about those impossible blocks that simply can’t be removed and get in the way of people leading the lives they really want, and how we can remove them. Here’s the run down of those top 10 blocks ...

Seeing the Child, Not the Disability
Dennis Rosen, New York Times (blogs), 24th July 2014
..."I like the people in health care. People in health care, they don’t stare at my son like he’s some kind of freak, you know? They see him for who he is.” ...

Easy English workshop - Parramatta, 12th August

One day workshop with Cathy Basterfield - limited places available.

Image: pixabay.com
Developed in Australia, and now used worldwide, Easy English is a style of writing and presentation designed to provide understandable, concise information for people who do not have functional literacy.

Easy English training is recommended for anyone wishing to improve their communication with people who have 
  • an intellectual or cognitive disability 
  • a learning disability
  • an acquired disability, such as stroke, brain injury or 
  • degenerative condition
  • poor educational outcomes
Cathy Basterfield, of Access Easy English, is an internationally renowned Easy English developer, practitioner and trainer. She is a trained Speech Pathologist with over 25 years experience working with people with Complex Communication Needs. 

Tuesday 12 August, 2014
ICE (Information & Cultural Exchange)
8 Victoria Road Parramatta
$220 per person (GST incl)

This training is hosted by Down Syndrome NSW - for further information or to book a place, please contact Michelle Bamber on 02 9841 4444 or admin@dsansw.org.au

Access to information. Everyone’s human right.

Transition to School - online resource

Fittingly during NSW Education Week, the Minister for Disability Services, John Ajaka has launched the Transition to School online resource, designed to help children with disabilities make a smoother transition to school.


And this is a good opportunity for a reminder about this Down Syndrome NSW event:

Preparing for School
Down Syndrome NSW workshop for parents of children starting school in 2015/2016
Wednesday 13th August 2014 - Rosehill

Thursday, 31 July 2014

Rethinking College: online documentary, resources

Rethinking College is a 25 minute film produced by Think College that explores the growing movement to include students with intellectual disabilities in higher education. It is available for viewing online.
Through the perspectives of parents, educators, advocates, policy leaders, and most importantly, students, this film illustrates how colleges and universities can provide a setting for all students to grow, learn and build toward better futures ...


The Think College website has many more resources related to post-secondary education for people with intellectual disabilities. It is a US site, but much of the information is universal.

Dreamhouse documentary starts next Thursday


Three young adults with intellectual disabilities fly the nest and move into a new home for 10 weeks. If it works out, they can stay on and call The Dreamhouse home.
ABC TV 1 Thursday 7th August 2014,  9:30pm - trailer

Wednesday, 30 July 2014

Take part in the biggest conversation happening about intellectual disability and the NDIS this year!




Online group for grandparents

 Grandparents with Grandkids with Down Syndrome (GWGWDS) is a closed Facebook group:
We are an independent group of grandparents with grandchildren with Down Syndrome. We are not attached to any organization, agency, or entity. We answer to no one except ourselves. We exist to provide support, information, and education to those who want it. There are no commercial solicitations, no medical advice given, and never any derogatory comments. We welcome all grandparents worldwide with grandchildren with down syndrome without regard to race, creed, religion, or national origin.
Characteristics of a closed group are defined here.

Tuesday, 29 July 2014

Good health: mental health resources for people with complex communication needs

The Bridging Project aims to build bridges between specialist and community providers of mental health services in relation to people with complex communication needs. 
A person with complex communication needs cannot use speech to communicate so that others can understand them. Some people with complex communication needs may also have a mental illness. 
A person with a complex communication need may notice changes in the way they think, feel and behave. This can make it hard to cope with everyday things. It can be difficult finding the right kind of help. It can be even more difficult to find the right help when a person does not use speech to communicate. 

Imagine: Challenge 2014 Art Competition

Note that this art competition is open to people from all over NSW who are accessing a disability service:


The fine print says:
Entries are open to all persons with a disability attending 
a disability service in NSW.
For entry forms or for further information please contact 
Challenge Marketing on 02 6763 1806 
To download an entry, visit www.challengecommunity.org.au

Entries close on Monday 13th October 2014

Monday, 28 July 2014

Inverell's Scrappers in the news

Great story and a terrific photo with Emi Campbell and the Inverell Scrapheap Adventure team in the Inverell Times:

Taking up the scrapheap challenge
Michèle Jedlicka, Inverell Times, 25th July 2014
... Inverell riders have participated in the (Scrapheap) Challenge since 2011. Col, Mick O’Brien and Phil Kimber were the first three to take the trip, and since then, the riding ranks have swelled to 14, and more are welcome to join the effort.

Local pharmacist Brendon Campbell is riding for the first year in support of the program. His daughter Emi has Down Syndrome, and Brendon has just achieved his P plates and bought a motorbike to join the local Scrapheapers.

He’s been giving Emi rides around the paddock on his bike, and Emi said had fun on the bike with her dad.

“It’s a really good ride,” she said.

“She hangs on with her thumb on the horn if I go too fast,” Brendon laughed. “I don’t know what our neighbours think!” ...
read the full story and see the Inverell Times fabulous photo here.

Share your thoughts on the current welfare review with the National Welfare Rights Network

The Government has announced that they are reviewing the social security system. In the 2014 Budget, some significant changes were proposed for people receiving the Disability Support Pension which could affect people under 35. 
The National Welfare Rights Network (NWRN) wants to talk to people who may be affected by these changes. To have your say about the proposed changes - please participate in the research being conducted ... read more about the project and how you can participate here.

Friday, 25 July 2014

Weekend reading and viewing: 26th - 27th July 2014


July Workshop Rehearsal Shots - Katrina Folkwell Does it Again!
An album of Katrina Folkwell's photos taken during a weekend integrated dance workshop on the far North Coast of NSW.



Voices at the Table (VATTA), Canadian Down Syndrome Society, 12th June 2014
Trailer for "What Prenatal Testing Means To Me".

About the film: Prenatal testing is gaining more prevalence in the news and society. With new and emerging tests, many people are failing to ask - what does this mean to people with Down syndrome?

VATTA, the Canadian Down Syndrome Society's self-advocate-led steering committee, will explore this topic from their unique and often overlooked perspective. Learn more about prenatal testing. Find out what their hopes and fears are for the future of Down syndrome in Canada and around the world. Join the conversation where people with Down syndrome reflect on their own value and contributions in their own community.

Who better to tell us? The finished film will be released next week - it will be available at www.cdss.ca and on VATTA's website.

Working towards arts accessibility
Ben Nielsen, Limelight, 17th July 2014
Australians with a disability are sometimes forgotten but a handful of organisations are championing the cause of arts accessibility ...

IBM Appoints Chief Accessibility Officer
Darryl K Taft, eWeek, 22nd July 2014
IBM has created a new position, Chief Accessibility Officer (CAO), aimed at redefining accessibility for users and ensuring that all users can have access to technology. Big Blue appointed Frances West as the company's first Chief Accessibility Officer. In this new role, West will guide IBM accessibility policies and practices. Additionally, she will lead IBM's collaboration with business, government and academia to advance accessibility standards and policy ... For more than 100 years, IBM has advanced technology access for people of all abilities. Some of its earliest innovations include the first Braille printer, a talking typewriter and the first commercially viable screen reader.

Disability Is Not Just a Metaphor
Christopher Shinn, The Atlantic, 23rd July 2014
The entertainment industry loves disabled characters—but not disabled actors ...

Accessible Arts (NSW) Newsletter, July 2014

2015 calendar - final reminder for photos !

DS NSW members - have you been meaning to send in photos to be included in the Down Syndrome New South Wales 2015 Calendar?

Well now is the time - photo submission close next Friday, 1st August 2015.


Please email your digital images to admin@dsansw.org.au to be included. 

We would prefer JPEG files, along with the name of the person with Down syndrome in the photo (first and last name please). Maximum of 8 images. Preference will be given to images that are in focus and showcase the person with Down syndrome.

Photographic prints will be accepted. Prints to be sent to our postal address:
Down Syndrome NSW
P.O. Box 107
Northmead NSW, 2152.
If there are other people in the photo we require your emailed assurance of each person’s permission to publish the image. Due to limited text space the photo will be labelled in the calendar using the name of the person with Down syndrome, along with brief text about any others in the photo (e.g ‘John Smith and friends’, ‘John Smith and Grandma’, ‘John Smith and family’, etc).
  • And if you still need to order your 2015 Entertainment Book, the details about both the paper and new digital editions are here.

Thursday, 24 July 2014

New resources

Racing Toward Better Speech: #NDSC14 Presentation 
Cincinnati speech and language therapist Jennifer Bekins  has generously made the slides from her presentation at the (US) National Down Syndrome Congress's annual convention available via her blog, Talk - Down Syndrome. The convention was held in Indianapolis, 12th - 13th July 2014

Newly published book for littlies
Animal Fun for Everyone!
Marjorie Pitzer , Woodine House, 2014
This photo-filled board book shows young kids with Down syndrome enjoying themselves with a veritable menagerie of animal friends—goats, dogs, cats, horses, fish, ducks, and more! Readers will smile as they see children hugging, petting, tickling, riding, and feeding these furry, feathery, and scaly creatures.

Excerpt from Animal Fun for Everyone
... images of less-commonly seen animals
In this latest book, author Marjorie Pitzer (I Can, Can You?, I Like Berries, Do You?) mixes fun with ample opportunity to learn and practice action and noun words (Talking to a parrot. Giggling at a guinea pig.). Youngsters will be entertained by the sheer variety of animals (there’s even a ferret!) and the obvious delight and wonder they inspire. (Publisher's notes).

This unique board book is recommended for children of all colors, shapes, sizes, and abilities ... Many board books contain pictures of animals, but less common are those that contain photographs of real children interacting with real animals. Animal Fun for Everyone! offers a closer connection to real interaction, instead of the more typical illustrations of children, or photos of animals alone ... read the whole review.

Belonging Matters 2014: Melbourne, September




Wednesday, 23 July 2014

Research news and commentary #8 for 2014

'Support cells' in brain play important role in Down syndrome
University of California Davis Health System News, 18th July 2014
Researchers from UC Davis School of Medicine and Shriners Hospitals for Children – Northern California have identified a group of cells in the brain that they say plays an important role in the abnormal neuron development in Down syndrome. After developing a new model for studying the syndrome using patient-derived stem cells, the scientists also found that applying an inexpensive antibiotic to the cells appears to correct many abnormalities in the interaction between the cells and developing neurons ...

Lines f Inquiry, Edition 4
Centre for Applied Disability Research, July 2014
If you weren’t among the 360-plus attendees at Centre for Applied Disability Research’s first ever Research to Action conference on 26 and 27 May 2014, you can catch up now on all the news and views.We report on a memorable two days in Sydney, and look at what happens next: how do we make sure the Australian disability research agenda really takes off?

Babies with Down syndrome could help delay the onset of Alzheimer’s disease
Annette Karmiloff-Smith, The Conversation, 3rd July 2014
... babies with Down syndrome, who always develop brains like those with Alzheimer’s later in life, don’t always go on to develop dementia. A study that I am involved in, called LonDowNs, is now trying to find out why this may be, with the hope of finding ways to slow down the development of dementia ...

Alzheimer’s Could Be a Form of Down Syndrome
Lisa Marshall, Scientific American, 17th June 2014
Scientists are studying them together to find underlying causes ... Is Alzheimer's disease an acquired form of Down syndrome? When neurobiologist Huntington Potter first posed the question in 1991, Alzheimer's researchers were skeptical. They were just beginning to explore the causes of the memory-robbing neurological disease. Scientists already knew that by age 40, nearly 100 percent of patients with Down syndrome, who have an extra copy of chromosome 21, had brains full of beta-amyloid peptide—the neuron-strangling plaque that is a hallmark of Alzheimer's ...

National Down Syndrome Research Resources
A list of links that will allow you to learn more about the latest national efforts related to Down syndrome research, provided by and recommended by the Down Syndrome Research Program team at Massachusetts General Hospital (Co-directors Drs. Allie Schwartz and Brian Skotko).

Just in case you missed our recent post about this recent archeological discovery:
Oldest case of Down's syndrome from medieval FranceColin Barras, New Scientist, 4th July 2014The oldest confirmed case of Down's syndrome has been found: the skeleton of a child who died 1500 years ago in early medieval France. According to the archaeologists, the way the child was buried hints that Down's syndrome was not necessarily stigmatised in the Middle Ages ... read on here(A link to the original paper is provided.)

Tuesday, 22 July 2014

DS NSW Trivia Night - change of date

The Trivia Night scheduled for Thursday 24th July 2014 has had to be rescheduled to

Saturday 30th August 2014


Please join us for a night of Trivia for your chance to win great prizes and support Down Syndrome NSW. It’s also a great chance to meet the DS NSW staff and extended network. Friends and family are welcome. There will be finger food and drinks are available for purchase. 

We have games, raffles and silent auctions so don’t forget some extra money for your chance to walk away with a great prize!

Saturday 30th August, 6:30pm for 7pm start 

Five Dock RSL, 66 Great North Rd Five Dock
Cost: $30 pp or table of ten, $250
Book your tickets online hereor  phone 9841 4444