Address details

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

Thursday, 28 February 2013

Bengali parent support group: Eastern Suburbs

Would you be interested to have contact with other parents who have children with special needs in the Eastern Suburbs?

It would be an opportunity for sharing information, with discussion in the Bengali language on what you'd like to know more about to help support your child and family.

Discussion about services, different agencies, choices on what interests you, like parenting, support behaviours, development stages, supporting children with development. 

Come to a first meeting to let us know about what would support you. 

If you are interested, please contact - ASHRAF 8338 8506 or ROSETTA 8344 2700

Library Thursday: Speaking of apraxia

Written by Leslie Lindsay and published by Woodbine House. 

Described by the publisher as “a parents' guide to understanding, treating, and living with childhood apraxia of speech (CAS). Written in an empathic style by a parent who "has been there", Speaking of Apraxia offers hope and practical advice for parents of toddlers to teens with this neurologically-based motor speech disorder. 

Characterized by difficulties with planning and producing the complex set of movements necessary for intelligible speech, CAS can be a child's only diagnosis or can be accompanied by other special needs such as learning disabilities, Down syndrome, or autism. Parents and professionals will appreciate the author's clear explanations of everything from diagnosing CAS and working with speech-language pathologists (SLPs), to understanding how to distinguish it from other speech disorders, and getting appropriate early intervention and special education support.”

This book has been well received by members of DS NSW who have already read it.

Down Syndrome NSW members can borrow library items by contacting Jo, at or 9841 4410.

Two day workshop with Michael Kendrick

Are you preparing for the NDIS … if so this workshop may interest you?

The Centre for Disability Studies (University of Sydney) is hosting a two day workshop

Individual and Agency Transformation

led by Dr Michael Kendrick

Dr Kendrick is well known internationally for consulting with  organisations to bring about change particularly as it relates to individualised funding and self directed support.  He has consulted and lectured worldwide on models of service and support that provide the best fit to meet individual needs.  He is also well known for his work on agency transformation in creating richer lives for people with disabilities and family members.   

Wednesday 20th and Thursday 21st March 2013
St Andrews College
University of Sydney

Wednesday, 27 February 2013

Playing to their strengths: A workshop for teachers and school personnel working with students who have Down syndrome in Primary School.

Down Syndrome NSW invites you to join Judy Davidson, Parent Support Manager, Down Syndrome NSW, who has a background in education, as she discusses the latest research and information about students with Down syndrome, including:
  • Factors that impact on a student’s learning, communication and behaviour - outlining the
  • developmental profile
  • Best practice strategies to promote success in the school environment - examples from practice
  • The importance of using visual tools to support effective learning, communication and behaviour
  • The effect of short term auditory memory impairment - management methodologies
  • Overview of a range of excellent resources available to you and your school

Flyer and registration form for
Playing to their strengths,
3rd April 2013
Wednesday 3rd April 2013
9:30 am — 3:00 pm

Rosehill Bowling Club
James Ruse Drive 

$132 per person (non member)
$99 per person (member)
  • Morning tea and lunch provided
  • Library items will be available for borrowing by members on the day
Prior registration is  essential for catering. Please register by Wednesday  27th March

Minimum numbers will apply.

or 02 9841 4411

Please note: You are able to join DSNSW as a member prior to the workshop and enjoy significant benefits and savings. Schools wishing to join do so as a Group / Organisational member ($82.50), or teachers joining as individuals do so as a professional member ($40).

New web page for T 4321, and other World Down Syndrome Day news

T4321 is an opportunity for the whole community to join in the celebrations for World Down Syndrome Day, celebrated internationally on 21st March, to recognise the abilities and achievements of people with Down syndrome and raise vital funds to support their needs.

In NSW, ‘Tea for 321’ (T4321) was launched with over 60 events and over 1000 people taking part across NSW in 2006 - to get involved in 2013, or for further information click HERE!

Meanwhile, in New York ... 
Down Syndrome International is delighted to announce that the World Down Syndrome Day Conference will once again take place on 21 March 2013 at the United Nations Headquarters, New York, USA.

This year's World Down Syndrome Day Conference is entitled: "Right To Work".

The Conference will help to realise the right of persons with Down syndrome to work in open, inclusive and accessible environments. It will highlight the importance of early development and education, proper medical care, and support for employment, independent living and community participation in realising this right.

There will be presentations from people with Down syndrome, disability organisations, employers, service providers and others from around the world including North America, South America, Europe, Asia, Africa and Australia.

Registration is FREE and is now open. PLEASE REGISTER HERE.

And online?
Last year Mark Jones designed a Google Doodle proposal for World Down Syndrome Day. Although it wasn't used by Google, it still generated a lot of global attention. Now is the time to try again! ... you could help by emailing the doodle to Google, using this address:

You can 'like', 'comment' and 'share' the Google Doodle on the Cayman Islands World Down Syndrome Day Facebook page (11th February), and a number of other Facebook pages.

Tuesday, 26 February 2013

SAge-ID Study expanded to all Metro South Sydney residents

The Successful Ageing in Intellectual Disability Study on Facebook today:

We are excited to announce that we have expanded the SAge-ID Study to include all suburbs in the Metro South Region of Sydney. 

If you or someone you know might be interested, please contact the NSW team on (02) 9931 9155 or (02) 9385 3994 or email

Sutherland Shire and St George coffee morning

Monday 11th March, 10am-12pm 
ADHC Early Childhood Services
level 2, 390 Forest Road, Hurstville
opposite Rivers Store (carpark at rear) 
Please come along for a general catch-up and to welcome new families. Bring morning tea to share, coffee/tea provided. All are welcome - parents, grandparents, bubs, toddlers, parents of school-aged children.

Also we have Picnic/Brunch the last Sunday of each school holidays:

Sunday 28th April, 11.00 am
E.G. Waterhouse Camelia Gardens 
cnr President Ave & Kareena Rd Caringbah
Meet at top playground beside the Teahouse 

Contact: Mary Givney-Clark on 0402 045 547

Monday, 25 February 2013

Creative Programs Network 2013: launch invitation

They fell asleep in their dreams,
Matthew Calandra, Studio ARTES
Accessible Arts is launching the Creative Programs Network once again in 2013. As an informal forum, this network supports the development, implementation and evaluation of creative arts programs for people with disability.

Managers, coordinators, producers, curators, arts workers and other relevant personnel responsible for the delivery of creative art programs in disability services and arts organisations are invited to participate.

Discussion focuses around common issues and challenges associated with the provision of inclusion. Information about programs, opportunities and facilities available in arts and disability are shared in an exchange of experience and knowledge.

The networks’ first meeting will be hosted by Accessible Arts and led by CEO Sancha Donald. Morning tea will be provided. RSVP by Friday 1 March 2013.

Thursday 7 March, 10:00 am to 12:30 pm 

Accessible Arts Training Room, Pier 4, The Wharf, Hickson Road 
Walsh Bay NSW 2000 
Accessible venue and amenities

Free event for arts and disability personnel delivering creative arts programs for people with disability. 
Contact: Sarah-Vyne Vassallo, Arts Development Officer, tel: (02) 9251 6499 ext 110 or (Thursday and Friday)

More information: programs

Disability Services Act Review – Additional Penrith consultation session

We have previously informed you about the development of new disability legislation for NSW, in line with National Disability Insurance Scheme and to support reforms under Stronger Together 2.

To inform the development of the new legislation we have held a series of consultations across NSW with people with disability, families and carers, and service providers. Due to demand we have now arranged an additional consultation session in Penrith.

The consultation session will be held on
Monday, 11 March 2013 9:30 – 12:00 
at the Penrith Panthers, 123 Mulgoa Road, Penrith.
You can register to attend this consultation session by providing your details via:

We would encourage you to extend the invitation to people with disability, families and carers.

Further details about the legislative review process including how to make a written submission are available at

Disability Services Act Review Team
Ageing, Disability and Home Care
Phone: 1800 446 470 

Saturday, 23 February 2013

Weekend reading and viewing, 23rd - 24th February 2013

Vision in children with Down syndrome, Maggie Woodhouse, DSA Journal (UK), Spring/Summer 2013, February 2013.  In case you missed yesterday's post linking to this article and other new resources about vision in children with Down syndrome.

Schoolgirl beats the odds, Hannah Martin, The Mercury (Hobart), 2nd February 2013

The furore surrounding my model child: a mother responds. Catia Malaquias, nine.msn Thursday, February 7, 2013

Gabrielle Clark, Australia Day Ambassador, Australia Day Council, 2013

Disability in film - are attitudes  changing? Scott Jordan Harris, Ouch! 21st February 2013

Ageing and Intellectual Disability: Staying Well and Included Forum, La Trobe University and Radius Disability Services, 13th February 2013. Presentations from this free community forum are available for free download via iTunes:
  • “Understanding and addressing mental health inequalities” by A/Prof. Julian Trollor, University of New South Wales
  • “Approaching dementia assessment for people with intellectual disability” by Dr. Jenny Torr, Monash University
  • “Supporting active and healthy ageing – Service system challenges” by Prof. Christine Bigby, La Trobe University

Friday, 22 February 2013

Some more statistics: Latest data on births in England and Wales

If you are interested in how many babies are being born world-wide with Down syndrome now, Frank Buckley's blog post about the latest statistics for England and Wales will be a useful addition to the most recent statistics for NSW, that we posted about earlier this week.

Frank Buckley is the CEO of Down Syndrome Education International, based in England. He blogs at Frank Talk.

Vision in children with Down syndrome

The London based Down's Syndrome Association has made vision in people with Down syndrome the theme for their Awareness Week in March, and has made a number of new resources  about vision available online here.
Aim: To increase greater understanding of visual acuity and what it means for people with Down's syndrome.
What can we do to help?
Appreciate that people with Down's syndrome see the world differently – their world lacks fine details and sharp contracts. In order to compensate for the poorer visual acuity we can make the world around them big and bold.

Big and Bold printed materials and images will help – people with Down's syndrome are visual learners so to help them succeed make sure they can see things. 
We also need to ensure that all professionals from school and onwards are aware of the poorer visual acuity and make simple changes to ensure that it is big and bold.
The resource list includes a new article from Dr Maggie Woodhouse, a world renowned researcher and clinician in vision in children with Down syndrome, Vision in children with Down syndrome, that was published in the Spring/Summer 2013 issue of the DSA Journal.

Thursday, 21 February 2013

Government promises disabled will keep their pension

Stephanie Peatling
Sydney Morning Herald, 21st February 2013

People with disabilities will still receive the pension once the National Disability Insurance Scheme begins, the federal government has promised.

Disability advocates have told the parliamentary inquiry examining the scheme they are concerned the government will try to recoup the cost by winding back access to income support payments. The Welfare Rights Network says the government has been unclear about whether people who will be eligible for the NDIS will still be paid the disability support pension ... Read more in the Sydney Morning Herald online.

Library Thursday

New in the library

Down’s Upside: positive view of Down’s syndrome
Large format book of high quality photographic portraits of children with Down syndrome,taken by Eva Snoijink, who is also known as Mrs. Fluitekruidje. The images can be seen at her website.
Eva Snoijink realised that her preconceived ideas about Down’s syndrome were baseless after meeting Pien, a six-year-old girl with the condition, in 2006. A children’s photographer, who normally works under the name Mrs Fluitekruidje, this encounter inspired Snoijink to try and capture many positive aspects of the disability through her work.

“How little a child with Down’s syndrome differs from other children!” Snoijink remarks in the book’s preface. “How often I heard [from parents] ‘If I had known this beforehand, I wouldn’t have worried so much.’ This is what I want to show you: Down’s Upside.”     Matilda Batterby's review of the book in The Independent, 31/01/2011

Return of Library Resources
As we will soon be moving all Library resources will need to be returned to DS NSW by mid-March, so that we can assess the collection. Contact Jo via email: if you have any problem returning items.

Wednesday, 20 February 2013

Great post at 'Let's Talk - Down syndrome' on evaluating products and programs

Will it work? How to choose a product/program for your child with Down syndrome is today's post on Jennifer Bekin's excellent blog, Let's Talk - Down syndrome.  

She describes typical scenarios where products or programs are flagged as potentially or 'definitely' helpful in promoting the development of children with Down syndrome, a typical range of parents' responses, and gives a set of principles and actions to apply before committing your energy, time, money and expectations. There is a link to a short 'Toolkit for examining treatments' developed by Jennifer, as a checklist for  working your way through claims and evidence.

The advice is not just useful in evaluating communication and feeding programs for children with Down syndrome - the whole post would translate nicely for products and programs offered for a child with any kind of developmental disability, in any field.

NSW birth statistics updated to 2010

NSW Health has recently released the New South Wales Mothers and Babies Report 2010.

Chapter 9, Congenital Conditions includes the most recent pregnancy and birth statistics on babies with Down syndrome, pp 92 - 100. The statics are listed in tables and graphs indicating trends, but no specific comment is made in the text about trends related to Trisomy 21.

This report updates the NSW the statistics referred to in this 2009 post  which is still often accessed.

NSW Mothers and Babies Reports 1996 - 2010 are now individually linked from this NSW Health web page.

National data is collated by the Australian Institute for Health and Welfare, which has published it online and in print from time to time, as Congenital Anomalies reports - but they are currently listed as 'not reported on'.

The most recent AIHW data on the birth incidence of Down syndrome is a rate of 11:10,000 given as the rate of Down syndrome occurring among infants at birth 1998 - 2003, in the report, A picture of Australia's children 2009, Part ll: How healthy are Australia's children, p 11 - table of indicators. In Section 7, Congenital Anomalies, Table 7.1 (p 29) gives rates and numbers of babies born with Down syndrome in indigenous and non indigenous populations (no significant difference), and by geographical location with commentary on differences, and notes that termination because of Down syndrome occurred at more than twice the birth rate (25:10,000).

Tuesday, 19 February 2013

Right man for the job thrills boss

Kate Carr
St George and Sutherland Shire Leader
18th February, 2013

Way to go, Tom Maclachlan!

Key Word Sign NSW: workshop, St Marys

Presenter: Meagan Rudd - Key Word Sign NSW presenter and tutor

This workshop covers the use of Key Word Sign and natural gesture to assist individuals who have difficulties with receptive and/or expressive communication. Come along and learn how to use Key Word Sign, natural gesture and other strategies to communicate with your clients or child.

The workshop is relevant for anyone living or working with a person with communication difficulties such as family members, education and medical professionals, teacher assistants, child care workers & volunteers. No signing experience necessary.

Monday, 18 February 2013

Northern Sydney Intellectual Disability Health Team

The Northern Sydney Intellectual Disability Health Team's clinic at Cremorne was launched last week.  Information from the clinic brochure:

Click here to download the
brochure as a .pdf
- it includes
a location map and transport
People with intellectual disability often have more health problems than others in the general community. Many health needs can be met by a person’s General Practitioner, but sometimes a specialised approach is needed.

Northern Intellectual Disability Health is a multidisciplinary health service for school aged children, adolescents and adults with intellectual disability and complex health needs. It is one of three specialised clinical service pilots established by the NSW Ministry of Health.

This service, operated by the Centre for Disability Studies (University of Sydney), provides medical and health consultations, advice and referrals. The service is funded by Northern Sydney Local Health District.

The service works in conjunction with the person’s General Practitioner and/or paediatrician, other health services and disability service providers to ensure coordinated, high quality health care.

People with intellectual disability who live in the Northern Sydney Local Health District are eligible to be seen at the clinic. 

Saturday, 16 February 2013

Weekend reading, and viewing 16th - 17th February 2013

An Unexpected Journey, Jennifer Crowson, Down Syndrome Research Foundation (Vancouver), 13th February 2013. A mother describes the four days between a prenatal scan and confirmation that her baby has Down syndrome.

Pre-feeding exercises for children with DS: A must? Jennifer Bekins, Let's talk - Down syndrome, 14th February 2013

How your parenting choices can make my children's lives easier, Maureen Wallace, Chasing Charlie, allParenting, 11th February 2013

12 Rules of friendship from a mother of a child with special needs, Eliana Tardio, 27th September 2012

Will 2013 be the year that changes the game? Stella Young, Ramp Up, 1st February 2013

You probably noticed that it was Valentine's Day on Thursday - it produced a flurry of online activity about and by people with Down syndrome and other disabilities. Here are just a few:

Friday, 15 February 2013

Amended time for Indepence! event

The time for the  Down Syndrome NSW event, 

has been amended to:

2.00 pm - 4.30 pm
Saturday 23rd February 2013
(date and all other details are unchanged)

The Successful Ageing in Intellectual Disability Study

If you care for a person with Down syndrome who is over 40, you might be interested in participating in this study, currently being conducted by the Department of Developmental Disability Neuropsychiatry at the University of NSW, in collaboration with other centres:
The Successful Ageing in Intellectual Disability (SAge-ID) Study is looking at what it’s like for people with intellectual disability as they get older. People can be in the study if they:
•  Have an intellectual disability, and
•  are over 40 years old, and
•  live in or near the NSW regions of Randwick, Botany, Rockdale, Illawarra, or Shoalhaven, or
•  live in or near the VIC regions of Bendigo, Shepparton, Loddon, Swan Hill, Mildura or Macedon Ranges. 
Being in the study means that a person who knows you well will tell us some things about your health and activities. The person could be a family member or someone who helps care for you.
Please visit our website if you would like some more information about the study! We have recently uploaded the study “information packs”. These information packs are written in English, Mandarin and Greek, you just need to click on the language that you speak best. These sheets include a study brochure, the study invitation letter and the expression of interest form. All the sheets are easy to download and include study information like why we are doing the study and what happens in the study. 
(Extract from the 'About' page of the  SAge-ID Facebook page)

Edit 26th February 2013:

Successful Ageing in Intellectual Disability Study on Facebook today:

We are excited to announce that we have expanded the SAge-ID Study to include all suburbs in the Metro South Region of Sydney. If you or someone you know might be interested, please contact the NSW team, details below.

Further Information is also available from project staff:

Phone: 02 9931 9155 or 02 9385 3994
SAge-ID Facebook page

For information about the broader range of projects of 3DN, visit the departmental website:

... The Department supports the mental health needs of individuals with Intellectual Disability through the education and training of health professionals, and by conducting research with a particular focus on the neuropsychiatry of intellectual disability.

Thursday, 14 February 2013

Library Thursday: new publication in print and for Kindle

Apparently it's not just Valentine's Day today, but it's Library Lovers Day too ... so call Jo or drop her an email to tell her how much you appreciate our very specialised library - or better yet, borrow something, and/or return any overdue loans!

New in the library

As promised, the much anticipated new book, When Down Syndrome and Autism Intersect is now available for loan to DS NSW members from our library.

It has also been published for Kindle - download and price details are here.

Links to other resources on the dual diagnosis of Down syndrome and autism are listed on our Health Information and Services web page.

A comic by Noel Lang and Rodrigo Garcia
Translated from the Spanish, about a boy, his friends and his affection for a Petula Clark record.

The Interviewer (DVD)
Bus Stop Films. Starring: Gerard O’Dwyer, Winston Cooper, Chris Haywood
Fantastic short film (15 mins) plus making of documentary outlining the collaboration between Bus Stop Films and Sydney Community College to facilitate inclusive film making workshops.
“Thomas Howell gets more than he bargained for in his interview at a prestigious law firm; an insult about his tie, a rendition of Harry Potter and the chance to change the lives of a father and son.”

Bus Stop Films latest successes

Congratulations to Bus Stop Films on two recent accolades:
We're pleased to announce that The Interviewer has been selected for Boston International Film Festival! Boston International has selected 100 films for this years festival out of 2,600 entries. Not all films are short, they include features, experimental films and documentaries. So we're proud to have made it in amongst the narrative shorts in competition! Congrats to all Bus Sop Films filmmakers who made the project! It just goes to show that there is a viable place for inclusive filmmaking in the film industry and that we can make beautiful films that speak to international audiences! (Bus Stop Films blog, 11th February 2013)
2009 Tropfest winner Be My Brother has been included in a collection of the the best of recent best films from previous years, by the Sydney Morning Herald (linked on p 3).
Who would have thought our very first short film would still be making waves today? (Bus Stop Films on Facebook, 11th February 2013)
Bus Stop Films is dedicated to providing people who identify as having a disability the opportunity to learn about and be involved in professional filmmaking. (Bus Stop Films) 
Several people with Down syndrome regularly particpate in Bus Stop productions, behind the camera, and as actors. Visit the Bus Stop Films website for information, photos and videos.

Wednesday, 13 February 2013

6th International Down Syndrome Swimming Championships: NSW swimmers' results

Team Australia 2012
Down Syndrome Down Under Swimming Organisation
Australia sent a team of 23 swimmers to Loano, Italy to compete in the 6th International Down Syndrome Swimming Championships, including 4 swimmers from NSW, November 2012. The swag of medals was impressive, as can be seen by the list, despite there being formidable competition from several countries such as Italy, Mexico, Great Britain and South Africa.

All that training paid off, with Australia once again the overall winners. We were all so proud of our Aussies and the amazing effort they put in. Unfortunately Daniel Rumsey was taken ill so was not able to compete in the last three days of competition but the others kept swimming despite exhausting long days.

Brendan Foley swims in the mosaic category whereas all the others have Trisomy 21, which is hard for Brendan as he can never swim a relay as there are not enough Aussie swimmers with mosaic DS.

Lucy Dumitrescu was included in 5 relays and came back with a gold for each one, but a heat and final of a relay every day added hugely to her work load. She returned with gold in 100 and 200 fly and bronze in the 50 fly, so she was the world's best butterflier, Madame Butterfly!

James Lawrence was the new man to the team and was a valuable member coming back with his share of medals.

Well done NSW!

It is fantastic for our swimmers to race against swimmers from so many other countries, and it is amazing that Australia can return with so many medals when swimming against the best swimmers with Down syndrome in the world. The reward for all that work is visible on their faces. For the parents came the thrill of knowing what our athletes can do: they can train hard and race hard, producing wonderful results.

NSW swimmers: Damiel Rumsey, Brendan Foley,
Lucy Dumitrescu and James Lawrence
Individual results were: 

Daniel Rumsey
Gold 4 x 50 medley relay
Gold 100 Breaststroke
Silver 50 Breaststroke
Bronze 100 Backstroke

James Lawrence 
Silver 25m freestyle relay
Silver 25m medley relay
Bronze 4 x100m freestyle relay

Lucy Dumitrescu Gold 100 butterfly
Gold 200 butterfly
Gold 4 x 50 free relay
Gold 4 x 100 free relay
Gold 4 x 200 free relay
Gold 4 x 50 medley relay
Gold 4 x 100 medley relay
Bronze 200 backstroke
Bronze 50 butterfly

Brendan Foley (Mosaic)
Gold 800 freestyle
Gold 200 breaststroke
Gold 400 freestyle
Gold 1500 freestyle
Gold 100 butterfly
Gold 200 individual medley
Silver 100 breaststroke
Silver 50 breaststroke
Bronze 200 IM

The next event on our calendar is:

2nd Down Syndrome National Swimming Championships

Knox Grammar Pool, Wahroonga, NSW 2076

28th - 29th September 2013

There will be races for every level of swimmer, and swimmers with Down syndrome swimming against other swimmers with Down syndrome (Mosaic and T21 separately).  We are following the lead of Great Britain and Europe where  Nationals CHampionships are held to encourage more swimmers.with Down syndrome to participate.

The Knox Pool is a beautiful new indoor 25m pool, close to the station so easy for interstate visitors. We will hold a dinner on Saturday 28th to help us get to know each other.

Entry forms will be available later in the year.

For further information, please contact: The Secretary,  or Down Syndrome Down Under Swimming Organisation.

Sarah Harvey

Artist call out for Newcastle commission



We’re looking to commission an artist/s to create an iconic Novocastrian lounge for the 2013 PossABLE IDEAS EXPO!

Closing date 7th March 2013

Further information and the artist's brief is here on the 2013 PossABLE IDEAS EXPO! website.  

Tuesday, 12 February 2013

Scrapheap Adventure Ride 2013: the trailer

The Scrapheap Adventure Ride raises money for Down Syndrome NSW and is held this year at Comeroo Camel Station,150kms North-West of Bourke. Have a fantastic adventure ride all the while raising money and awareness for a great cause. Be there March 29-30, 2013

A dance date for the diary

Monday, 11 February 2013

Beware of scammers asking for NDIS fees

Joint Media Release from Hon Jenny Macklin (Minister for Disability Reform), and Senator Jan McLucas ( Parliamentary Secretary for Disabilities and Carers)
11th February 2013

People are being warned to beware of contact from anyone claiming to work for the Government who tries to make them pay an administration fee to access the National Disability Insurance Scheme (NDIS).

These claims are false.

There is no need for people to pay a fee to join the National Disability Insurance Scheme.

The Gillard Government is investing $1 billion to launch the first stage of the NDIS in five sites across the country from July this year.

The NDIS Launch Transition Agency will deliver the first stage of the NDIS and in the lead up to launch will communicate with many people with disability in the launch sites.

However, the Agency will not be seeking fees from anyone to participate in the scheme.

People should be very wary of anyone asking for payments for Government schemes, including the NDIS.

If people are concerned that their privacy has been breached or they have provided personal details as a result of one of these calls, they should report it to the police.

People can also report a scam and get further information at the Government’s Scamwatch website,, or call the hotline on 1300 795 995.

If you have any further enquiries about this scam email

If you want to know more about the facts of the NDIS please go to the Government’s official web site at

High Tea at Old Government House

World Down Syndrome Day is fast approaching and to celebrate this glorious day, Down Syndrome NSW is hosting High Tea at Lachlan's restaurant at Old Government House in Parramatta. 

With delectable delights, mouth watering sandwiches, tea, coffee and soft drinks flowing throughout the day, be part of the this global opportunity to raise awareness of Down syndrome in a beautiful heritage setting.

Invite your friends, relatives or work colleagues for a great day out.

Saturday 23rd March 2013
11.00am - 2.00 pm

RSVP: by 15th March

Tickets are available for $66 per person, tables are available in groups of 10.

For bookings and further information please contact Michelle or Siena on 02 9841 4444.

We look forward to sharing this day with you.

Click here to download and print High Tea 4 321 invitations

Interested in holding a High Tea 4 321 in your area? Call Priscilla Leong on 02 9841 4404.

$6 million for early intervention project in NSW

ADHC press release 30th January 2013

Minister for Disability Services Andrew Constance has announced a $6 million investment in early childhood intervention.

Services receiving the additional funds will be supported by Early Childhood Intervention Australia (ECIA) NSW Chapter in partnership with Ageing, Disability and Home Care to implement the Early Childhood Intervention Inclusion Project.

"This funding will lay the groundwork for the NSW Government's vision that children with disability aged 0 - 8 years and their families receive supports addressing their needs in a holistic and integrated way, with little distinction between specialist and mainstream providers," Mr Constance said.

"This funding will support the disability sector to reorientate their services and practices, working more closely with mainstream services, with a view to developing an integrated and seamless service system. The funding will provide places for 965 children and their families over two years."

It is estimated that in NSW, 1.7 per cent or 13,388 children aged 0 - 8 have additional needs. As well as providing additional places to those being funded under Stronger Together 2, the inclusion project will help to build a more sustainable service system for the future.

This project will look at innovative models for building the capacity of mainstream early childhood services to support families who have a child with disability, developing partnerships between disability and mainstream providers, and providing more choices for families in how and where they access support.

Saturday, 9 February 2013

Weekend reading, viewing and listening: 9th - 10th February 2013

Doctors Need to Understand Their Patients When It Comes to Prenatal TestingNancy Iannone, guest blog on Thin Places, 5th February 2013

Involuntary sterilisation of people with disability Episode 22, Podrights, Australian Human Rights Commission, 26th November 2012. (Links to MP3, 21 minutes 58 seconds, and/or transcript). In October 2012 the Senate Community Affairs Committee announced its intention to consider the involuntary sterilisation of people with disability. Despite the requirement for authorisation for sterilisation of girls and women with disability from the Family Court of Australia, or from state guardianship tribunals, the practice of non-therapeutic sterilisation continues to occur. While exact figures within the health sector are difficult to obtain, the anecdotal evidence received suggests that the practice still occurs both formally and informally. In this instalment of Podrights, Executive Director of Women With Disabilities Australia Carolyn Frohmader, joins Disability Discrimination Commissioner, Graeme Innes, to discuss this issue.

Asking for it: The politics of assistance, Stella Young, Ramp Up,  21st January 2011

What I hope Daniel Day-Lewis says at the Oscars, Mark Leach, Down Syndrome Prenatal Testing (blog), 7th February 2013

Dakota's Pride, 2008 award winning PBS Documentary now available in full online.  The DVD is available for DS NSW members to borrow from our library.

Patrick McCarthy embarks on the tip of a lifetime,, 27th January 2013 A young Chicago man with Down syndrome prepares to compete is speed skating at the recent Special Olympics World Winter Games in South Korea. Thanks to the Adult Down Syndrome Clinic for the link.

Games Update: World Winter Games, Special Olympics Australia, 7th February 2013. Stories and pictures of the small but very successful Team Australia at PeyongChang. For anyone interested in winter sports.

Friday, 8 February 2013

Giving a Gonski about education reform for students with disability

Children with Disability Australia has been the very public voice of Australian students with disability in lobbying for implementation of the Gonski review of education, as the Australian Parliament convenes for 2013 this week:

Response to use of 'retard' at your fingertips

This flow chart, prepared by Special Olympics Minnesota, and circulated today via their Facebook page provides an accurate, easy to follow response to common usage of the word 'retard(ed)' as an insult.  Available for download in two sizes, it can be used in a number of formats, online and in print.  You might need to enlarge your screen text (scroll down with your mouse while holding down the 'control' key), download the larger view (link below) or visit the Facebook page for a readable size text (or of you are using an iDevice, you know what to do):

Right click on this image to download the larger size - we needed to re-save the file with the file extension amended to '.jpg' to open it - or to share it on Twitter.

Thursday, 7 February 2013

Parliament debates NDIS legislation

Pollies make passionate pleas for NDIS
7th February 2013

Federal MPs from both sides of politics have told personal tales about relatives during debate on the National Disability Insurance Scheme (NDIS).

Liberal frontbencher Bob Baldwin (today) told parliament about his brother Bill, a diabetic double amputee on dialysis, while Labor backbencher Chris Hayes choked up briefly when talking about his autistic grandson.

"I know the effect it has financially, emotionally to all those who love and care for Nathaniel," Mr Hayes said of his grandson's diagnosis.

"I want for my grandson to be able to grow up in a community that cares ... a community that will seek to welcome his involvement in the future."  

... Labor's Andrew Leigh said the existing system was a patchwork, with carers frustrated by demands to continually prove a disability still existed.

Dr Leigh said mothers of Down syndrome children had to keep proving their chromosomes haven't changed ... Read the full AAP article here

Library Thursday

New Titles

The Boys’ Guide to Growing Up, and The Girls’ Guide to Growing Up, both by Terri Couwenhoven
These two books are written for adolescents with intellectual disabilities experiencing puberty. These books use succinct and straightforward language to address the physical and emotional changes of the “tween and teen” years. They are particularly strong on developing an understanding of public and private behaviours. Black and white illustrations. 


Both titles are also available in Kindle editions.

Important request from Jo
Borrowers are requested to return any overdue resources so that other members have access to them. We will be undertaking a stocktake soon, so swift action would be much appreciated. If the item has been lost please notify Jo via email: or telephone: 9841 4410

Vote for a cover for a new Woodbine House book
Readers are invited to help choose the cover of  A room full of golden shells: 100 works by artists and writers with Down syndrome, a forthcoming book from specialist publishers Woodbine House, by voting for your favourite of two images on their Facebook page (see today's post).  Publication is scheduled for March.

possABLE: IDEAS Expo 2013, Hunter

PossABLE embraces the ideals of person centred systems, ability and believing anything is possible in enabling people to achieve an independent and fulfilled life.
 What’s in it for me?
This expo is the single expo which answers “what’s in it for me?”, ME being a connection to anyone with a lived experience of disability. PossABLE will have the credible, trusted accurate suppliers and providers under one roof in the Hunter for the very first time.

Wednesday, 6 February 2013

Macquarie University: invitation to participate in research via an online survey

Dr Kathy Cologon is a researcher and lecturer at Macquarie University in Sydney. Her research focus is on education of children who experience disability, particularly children who have Down syndrome. She is currently conducting a study looking at family experiences of inclusion and exclusion in early childhood.
 Family experiences are less understood than they should be. Understanding family experiences, hopes and views on education is important for moving forward with educational policy and practice. 
Families are invited to participate in an initial  online survey for parents/caregivers, here

Independence! Families' experiences

Early intervention, school preparation, post school options then... 


Theirs and Ours

What does Independent living look like? What are other families doing? What supported living package are available?

Come and have a conversation and share information as four families share the practicalities, pitfalls and triumphs of seeking independence for their son or daughter with Down syndrome. 

2.00 - 4.30 pm, Saturday 23rd February 2013

Burwood RSL Club, 96 Shaftesbury Rd 

$11 for Down Syndrome NSW members; $16.50 for non-members

Tea, coffee and snacks on arrival.

For bookings please call Siena or Michelle 
on 9841 4444 by Thursday 21st February.

Membership available on the day.

This is the first of many family workshops to come in 2013

Tuesday, 5 February 2013

John Anton on Capitol Hill

Here is a remarkable new blog.  John Anton is a man with Down syndrome who is making a career move.

John Anton on Capitol Hill, a blog hosted by the Massachusetts Down Syndrome Congress, will be his record of his internship with a member of the US Congress. John will focus on lobbying for the rights and support and people with disabilities. He has previous experience as a lobbyist.

This is generational development.

A model Australian child ...

The Australian Womens Weekly this month (February 2013) has another excellent article about an Australian with Down syndrome ... this time a beautiful little boy called Julius, from Western Australia, who has himself a modelling job.

The online version is here, but both the print and iPad editions have a more substantial story and additional photos, both available now.

Other recent AWW articles about people with Down syndrome:

Monday, 4 February 2013

NDIS: what's new?

The purpose of this Consultation Paper is to explain what is intended to be covered in the NDIS Rules and to seek feedback from people with disability, their families and carers, service providers and the broader community.
Submissions for comment and feedback on the Consultation Paper on the NDIS Rules opened on 1 February 2013 and will close on 1 March 2013.

  • New Australian Government fact sheets:
Safeguards for the National Disability Insurance Scheme 
Early Intervention within the National Disability Insurance Scheme 
Choice and control within the National Disability Insurance SchemeIndigenous Australians

A collection of apps reviewed

A time-saving resource from The Friendship Circle:

The Friendship Circle App Review will allow you to browse through hundreds of special needs apps in such categories as:

  • Communication 
  • Social skills 
  • Life skills 
  • Behavior 
  • Education 
  • Scheduling 
  • Games

Saturday, 2 February 2013

Weekend reading, viewing and listening 2nd - 3rd February 2013

A date to remember, Paul (Emily's Dad), Orange Juice Flavour Sky (blog), Wednesday 23rd January 2013

Camera can’t capture the inner realities, Beverly Beckham, Boston Globe, 27th January 2013

A child with Down syndrome keeps his place at the table, George Estreich, New York Times, 25th January, 2013

Self serve, Dave Hingsburger, Rolling Around in My Head (blog), 29th January 2013.  Dave Hingsburger's thinks a little deeper about the online response to the story of the Houston waiter who refused to serve a customer who insulted a child with Down syndrome.  And you might note that he has illustrated his post with a cover image of an issue of our journal Voice, for which he has written several times. Cool.

The benefits of using a visual timer for children with special needs, Brenda Kosky Deskin, Friendship Circle (blog), 28th January 2013

Why I wish I had chosen prenatal testing, Patti Rice, guest blogger at Thin Places, 29th January 2013

Competing is the most fun thing I do, Susie Oyens with Max Adler, Golf Digest, January 2013.

Just buzz me when you're done,Todd Winther, Ramp Up, 29th January 2013

Walk a mile in my shoes: a program teaching students how to relate to people with a disability, Life Matters, Radio National (ABC) 21st January 2013 MP3 file can be downloaded.  The link was passed on by My Choice Matters, who asked, 'Do programs like this help? Do they make a difference? Do students need to be 'taught how to relate' to people with a disability?' What do you think?

Friday, 1 February 2013

Creating Community Connection: additional webinar date

Resourcing Families has advised that their webinar, Creating Community Connections scheduled for 6th March 2013 is now fully booked.  An additional webinar has been scheduled for

Tuesday 19th March 2013
10.00 am - 12.00 noon

Further details, including how to register (up to 7 days prior), are available from the Resourcing Families website.

Mel and Fran Eustace at Casula Powerhouse

Liverpool Leader, 25th January 2012

Mother and daughter team Frances and Melissa Eustace will inspire you with their story of family life and determination.

The duo will share a narrative of life for a person with an intellectual disability when they come to Casula next month.

The pair's strong partnership has enabled Melissa to reach her dreams in the fields of dance and sport at an Olympic level, and has secured the mother and daughter with a reputation as fine community and corporate speakers.      Read the full story in the Liverpool Leader here.
Fran and Mel's talk is one of a series on Women in Sport presented by the Casula Powerhouse Arts Centre:

26 February 2013, 12.30 – 1.30pm

Booking and details are available from the Casula Powerhouse Arts Centre website