Address details

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

Monday, 31 October 2011

Research project: Disability & Ability: How Young People with Impairments make the Transition to Adulthood

The 'Disability & Ability: How Young People with Impairments make the Transition to Adulthood' research project has been funded for three years by the Australian Research Council (ARC) to the University of Sydney and Deakin University. 

Researchers are seeking to recruit young people with disability aged 19 - 26yrs to be interviewed yearly for 3yrs. Interviews will take a life history approach and explore a range of topics - more detail is available from the project outline, and the participant brochure.

Contact: Gabrielle Hindmarsh on (02) 9351 9510 or email

This is a project of the Australian Family & Disability Studies Research Collaboration and has received approval from the University of Sydney Human Ethics Committee.

Newcastle Buddy Walk - great photos

Len and Robyn Keogh have started their blog with a selection of photos from the 2011 Buddy Walk - Australia in Newcastle on 16th October. There was a lot of joyful dancing!

Thank you for allowing us all to share your photos.

Spectronics’ free online training

Join the Spectronics professional training services team (Jane Farrall, Greg O’Connor, Charlene Cullen and Katie Lyon) for informative online sessions covering:
Texthelp Read&Write 10 GOLD: An introduction
Thursday 24th November at 2.15pm AEST
Thursday 15th December at 2.15pm AEST
Boardmaker Basics: Creating print activities
Wednesday 14th December at 2.15pm AEST
Boardmaker Plus Basics: Making talking books and other onscreen activities
Monday 21st November at 2.15pm AEST
Boardmaker Studio
Wednesday 30th November at 2.15pm AEST
Clicker 5: An introduction
Wednesday 16th November at 2.15pm AEST
Thursday 8th December at 2.15pm AEST
Sessions are free of charge and run for approximately 45 minutes. To register or to see more information visit Spectronics Online Training website: , or contact Eliza Bale on .

Saturday, 29 October 2011

(US) Down Syndrome News (October issue) online

The October 2011 issue of Down Syndrome News (vol 34, #6), published by the USA's National Down Syndrome Congress, has just been posted online.  Another great line-up of articles, including:

Feeding the Sensory System Early
Looks at the importance of developing a healthy and happy sensory system provides an important foundation that helps all children throughout their lives, by an occupational therapist

20 Ways to Adapt the Read Aloud
Advice for classroom teachers on including all student in a reading activity.

Where Are All the Opportunities? Optimizing Employment: Job Development Tips for Job Seekers and Their Families – Part II
Looking beyond the obvious in creating and/or finding job opportunities.

Five Ways Adults Can Support the Social Success of Students with Social Learning Challenges,
Describes five practical strategies that can be embedded into a learner's day to support the development of social skills.

Friday, 28 October 2011

Key Sign for Babies and Toddlers: parent workshop

A few places remain for this very useful workshop next Friday:

This Down Syndrome NSW workshop for parents will assist day to day communication. Key signing is used with speech.

Presented by Aileen Ryan, Hands Can Talk

10.30am - 1.30pm, Friday 4th November, 2011
Northcott Function Centre
1 Fennell Street, North Parramatta

Parking available at the Parramatta Leagues Club, O’Connell St
Northcott Lane joins the car park and the Northcott Centre.

Cost:  $20.00 per person, including GST and a light lunch

Babies under 1 yr are welcome, but we are not able to provide childcare for other children.
Older children may attend as participants, $10/ child

Booking is essential  ~  please call Lynn or Judy at Down Syndrome NSW, on 9841 4401, or email

This workshop is our customary follow-up to Babies Day, which was held on 17th September.  Photos are available in our Facebook album, Babies' Day.

Thursday, 27 October 2011

Library Thursday: Monica and David (DVD)

The award winning US documentary Monica and David, following a couple who both have Down syndrome from their wedding through the first year of their marriage, is now available for Down Syndrome NSW members to borrow from the library.  The library copy is the 'education edition' that includes extra film, ranging from deleted scenes to interviews with parents of adults who have Down syndrome (including the parents of another married man), and some well known professionals discussing adult matters.

Monica and David is much more than a wedding video - it is thought provoking, and sometimes challenging.  Borrowers might consider getting together with a group of friends for a group screening, and to discuss some of the issues with.

There is already a short waiting list to borrow - so put your name down now if you are interested.

A home edition, without the extra educational footage is scheduled to be released in December.

If you are interested in Monica and David, you might also want to borrow Strong Love, a video produced in 2007, that follows a couple, Jon and Holly through the first three years of their marriage.

Wednesday, 26 October 2011

Wordless Wednesday

Disability Sport and Physical Activity Expo

Free local community event - everyone welcome

11.00 am to 3.00 pm

Saturday 5 November 2011

Randwick Community Centre 
27 Munda Street, Randwick

Information from local service providers
Try activities: boccia, soccer, fitness training, sitting volleyball, sailing, rugby league
Face painting and light refreshments  

Registration essential: contact Frida Kitas on 02 9399 0972 or email

Source: Warringah Disability Information Service

Dr Allen Crocker, 1925 - 2011

Dr Allen Crocker, one of the leading pioneers of developmental paediatrics, who had a particular interest in children with Down syndrome, died on Sunday at the age of 85, in Boston. Dr Crocker cared for children with Down syndrome at Boston Children's Hospital, and through his teaching and writing for more than 50 years. He is remembered with enormous respect and great fondness by colleagues and families.

Dr Brian Skotko (Boston Children's Hospital) remembers his teacher, mentor and friend here, seeing Dr Crocker's legacy to the global Down syndrome community from this perspective:

They may not all know it, but children with Down syndrome have more opportunities today because of Allen. Parents have fewer battles to fight because Allen tore down walls. Grandparents play leading roles because Allen understood them to be central figures in family life. Brothers and sisters become advocates because Allen established precedents.

The excellent Speakers' series of webcast lectures and seminars on aspects of Down syndrome at Boston Children's Hospital is named in Dr Crocker's honour.

Tuesday, 25 October 2011

Wagga Wagga Buddy Walk - Australia photos

Photos from the Wagga Wagga Buddy Walk - Australia event have been posted to our Facebook albums here (thanks to Debbie Young from Kurrajong Waratah Early Intervention)

NSW Supported Living Fund survey

Ageing, Disability and Home Care (ADHC) has launched an online survey seeking your input to help shape how the NSW Government's Supported Living Fund will operate.

The Supported Living Fund is part of ADHC's individualised approach to supported accommodation, which helps people with a disability, their family and carers to plan for the future, access support and make accommodation arrangements that are based on their personal preferences.

If you weren't able to attend the recent round of consultation meetings, you can still contribute your views through an online survey, which closes at the end of November 2011.

The Supported Living Fund is one of the Government's first individualised and person centred approaches to delivering disability services in NSW.

The NSW Government has committed $60 million over five years through Stronger Together Two to provide 300 packages across NSW.

Visit to have your say.

Monday, 24 October 2011

Free parent/carer forum: Puberty, Sexuality and Relationships

1 - 5 pm Saturday 26th November 2011
Family Planning NSW, Ashfield

The forums are free for parents / unpaid carers / foster parents / relatives of children and young people with intellectual disability.
  • Practical workshops
  • Issues around sexuality and disability
  • Tips for talking about sex and answering tricky questions
  • Preparing for puberty changes
  • Books, DVDs and resources
  • Expert presenters to answer your questions
  • Meet other parents
  • Free resource bag
Hear from a range of FPNSW staff and guest speakers experienced in the area of sexuality and disability. Further information about each forum will be available on this page closer to the date.

Register online:

Forums are planned for 2012 in Illawarra, North Coast and Western Sydney

Enquiries: Vanessa Horn  or  02 8752 4388

Sunday, 23 October 2011

Postcards from Europe (3): Italy

Our first stop in Italy was Venice. It is an amazing place. Our apartment was well located and on the ground floor, but then I think it is pretty easy to get to most places on the island. It is the lane ways that cause tourists to get lost.

It was still quite busy so I dread to think what it would be like in the high season. It was lovely to walk about cars or scooters etc. The canal is clearly where all the traffic is. We decided to go on a gondola ride. We had the only female gondolier in Venice. It was worth the Euros. Hannah in particular loved it and laughed every time we went under a bridge and the poor gondolier had to duck, and there are lots of bridges there.

There were even more masks so Kit and Hannah chose one each and spent an afternoon preparing a performance for us. It was a lovely relaxing way to spend an afternoon. As was waking to the smell of croissants and bread rolls being warmed up in the kitchenette just outside our apartment.

From Venice we caught a train to Florence. By now our luggage had expanded somewhat so wrangling the children and the bags in an unfamiliar place was a bit of a challenge. Our fellow travelers were patient and a couple lent a helping hand too which was great.

Florence is such a pretty place. Where we stayed (near the Ponte del Vecchio) was more shopping than I have ever seen. The kids were starting to miss home by now but they enjoyed their birthday. Mine was the day after theirs so Phil bought us a cake and candles to celebrate. Kit sang 'happy birthday' in Italian which I loved. 

We found a local trattoria which was friendly and flexible. We ate there twice because the kids really liked eating somewhere familiar. On Sunday we went to the Uffizi Museum. I did not know what to expect there but it was fabulous. Room upon room of luscious paintings and rows upon rows of sculptures.

The wait to enter was about an hour so I decided to ask if it was possible for Hannah to skip the queue. One of the museum guards helped us. He was efficient and friendly. Not only did he take us straight in but we all got complimentary tickets. Avoiding the hour wait was a big help because it meant Hannah could conserve her energy for the zillion stairs inside. Inside we each found things we liked. Kit liked an interactive screen of maps and pictures, Hannah the models of the magnificent building. So far Hannah has claimed Florence as her favorite although I think she'd say Paris as well and Kit generally chooses Oxford as his favorite place. 

We are now on the home stretch of our 'big holiday' and I have to say much as we have loved it, we will all be glad to get home again. The twins in particular have found Rome very hard. It is a fantastic city with so much to see, perhaps we should have started our Italian leg here instead of in Venice. Oh well, we did manage to visit Vatican City which I loved. It did involve a lot of walking though which was made a little tricky by two weary kids but I still got to savor lots of the Vatican Museum, including the Sistine Chapel as well as squeeze in a fast paced walk through the magnificent St Peters Basilica (we bribed the kids with promises of yet more gelato).

On our last day in Roma we woke up to thunder and lightening so it was lucky that we had planned a lazy day on the hop on hop off bus, still reasonably manageable in the wet. The skies cleared briefly so we also stopped by the Trevi Fountain. Phil took a couple of photos there, I have included the one where I am coaxing a smile out of Hannah, as opposed to the one where she is clearly signing her home address!


Saturday, 22 October 2011

Sculpture by the Sea Tactile Tours

Sculpture by the Sea is offering people with vision impairment and people with intellectual disability the unique opportunity to engage with art hands-on.
Facilitating discovery through dialogue and touch, the Tactile Tours provide an informed and interactive experience for visitors with disabilities and their carers. Participants will be taken on a guided tour by an experienced Sculpture by the Sea staff member and encouraged to interact and engage with a selection of sculptures that are located in easily accessible areas and have been nominated by both the Artist and Site Manager as being safe to touch.

The tours are free to attend and bookings are essential as places are limited. Group bookings are also available at nominated times for School and Community groups for whom the set times below may not be suitable.

Twilight Tours
Tuesday 8 November, 5:30pm - 7:00pm
Thursday 10 November, 5:30pm - 7:00pm

Tactile Tours Access Day
Saturday 12 November, 10:30am - 12pm and 1pm - 2:30pm

More details from Accessible Arts NSW

Friday, 21 October 2011

A very active life

Clinton Stanley is a great advertisement  for people with Down syndrome remaining active as they get older.  Over 35, he is still a champion swimmer, recently competed in the Australian Masters Games winning several medals in the 'disability' category, doing times that would have won him medals in the mainstream categories too.  He looks fabulous - see this article from yesterday's Sunshine Coast Daily for the full story and a photo that will light up your day.

The Right Foot: contemporary dance workshop

For people with and without disability. Presented by DirtyFeet and led by dance practitioner Sarah-Vyne Vassallo.

Come and learn some great dance moves, meet new friends and have fun.

Saturday 5 November 2011, 10am - 1:30pm
Redfern Town Hall,
73 Pitt St, Redfern NSW
(Close to Redfern/Central stations)

Cost: Free (limited places available). Registration essential.

Contact: RSVP to  or 0438 325 943 

Thursday, 20 October 2011

Library (news) Thursday: Speech Pathology Australia Book of the Year awards

Choosing books for children with Down syndrome for Christmas or for the summer holidays? These awards could be a good source of inspiration - the web page includes annotations about all of the books short-listed. Note - these books are not in our library, but they are readily available from mainstream sources.

Speech Pathology Australia has awarded four authors for excellence in the development of children’s speech, language and literacy skills at a ceremony in Darwin.

Authors Carol Goess (Can we lick the spoon now?), Elizabeth Frankel (Hairy Nose Itchy Butt) and Morris Gleitzman (Now) received a Speech Pathology Australia’s 2011 Book of the Year Award, while representatives from the One Arm Point Remote Community School were present to receive the inaugural Best Book for Language & Literacy Development - Indigenous Children award for their book ‘Our World: Bardi Jaawi Life at Ardiyooloon’.
“As the peak professional body for speech pathologists, Speech Pathology Australia is in a unique position to recommend books to parents and educators that can assist children’s speech, language and literacy development.”

Speech pathologists play a vital role in the development of key speaking and listening skills, including awareness of the sounds in words and language comprehension. These skills provide the foundation on which literacy is built and each year, Speech Pathology Australia selects four children’s books based on their appeal to children, educational value, graphics and design, as well as their ability to facilitate communication, interaction and discussion.

The Awards, which began in 2003, were presented at the Millner Primary School in Darwin on Tuesday 18 October.

The ceremony was opened by Darwin Lord Mayor Graeme Sawyer and the winning authors read from their books.

Each year, Speech Pathology Australia awards four Australian authors the “Best Book for Language & Literacy Development” in the categories – Young Children, Lower Primary, Upper Primary and Indigenous Children.

Each award is based on the book’s appeal to children, interactive quality and ability to assist speech pathologists in communication and literacy development.

More information:

Merry Makers Gala Concert

Celebrate with the much loved dance troupe, the Merry Makers!

Sunday 20 November 2011 at 7pm
Opera Theatre, Sydney Opera House

Hosted by Jean Kittson, the evening of spectacular entertainment will be an incredibly uplifting, celebratory experience.

Guest Artists: John Paul Young, Katie Noonan, Dragon, Mark Williams, Julia Morris, Felicity Urquhart, The Stiff Gins, Daniel Belle, Hannah Greenshields, Jessica Fyfe and Jack Hersee from The Australian Ballet, 
Royal Australian Navy Admiral's Own Show Band.

BOOK NOW:       9250 7777

Time timer: a way to see time passing

Joan Medlen recommends the Time Timer (invented by the mother of a young woman with a disability), as a visual tool to help people see how much time is left for/until an event or activity, and to help with transitions between events and activities.

Australian distributor

Wednesday, 19 October 2011

Wordless Wednesday

Non-invasive prenatal test due to be released in US

A news release from the National Down Syndrome Society in New York, proposing criteria for new types of prenatal testing, coincides with reports of the first commercial release of  non-invasive prenatal tests that are reported to diagnose Down syndrome, with more than 98% accuracy:
National Down Syndrome Society Establishes Criteria to Evaluate Companies with Non-Invasive Prenatal Diagnostic Tests for Down Syndrome
The National Down Syndrome Society (NDSS) recognizes that many companies, both within the United States and abroad, are developing new noninvasive blood tests that might be able to detect Down syndrome prenatally.  The NDSS appreciates that these tests are likely to be safer for pregnant women than the current invasive options of chorionic villus sampling and amniocentesis.  However, before these new tests are made commercially available, companies should first meet all of  (these) criteria .... read the whole statement detailing the criteria.

New York Times article on the test's first commercial release, this week.

The research paper, to be published in the journal Genetics in Medicine, describing the latest trials upon which the release of this test is based is online here (the abstract is free).

Monday, 17 October 2011

Deadline of 2013 on NDIS

Sun-Herald, Sunday 16th October 2011, Stephanie Peatling:

Plans for a national disability insurance scheme will be accelerated by the federal government, which will tell the states this week it wants the foundations ready a year earlier than projected.
The Minister for Families and Community Services, Jenny Macklin, told The Sun-Herald: ''Getting this work done quickly will be an essential step towards delivering the kind of care and support that Australians expect for people with a disability. People with disability shouldn't have to wait any longer for these basic foundations.''

The national disability insurance scheme is designed to provide lifelong care for the disabled through a single scheme funded by the federal government.
More than 2 million people either live with a disability or are carers.

On Thursday, Ms Macklin will tell the states she wants the foundations of the scheme put in place in 2013, a year earlier than the time recommended by the Productivity Commission.

The director of Every Australian Counts, the campaign for a national disability insurance scheme, John Della Bosca, welcomed the faster timeline.

''Many of the campaign's 80,000 supporters have expressed the view that they are in desperate need of support now, and a commitment to implementing the national disability insurance scheme more quickly shows our politicians have been listening,'' he said.

All the states agreed to support the scheme at last month's Council of Australian Governments meeting. It also has the broad support of the Coalition.

Buddy Walk-Australia 2011 in NSW - a great day

Three NSW Buddy Walk - Australia events enjoyed excellent spring weather this weekend (remember last year ... floods, cancellations, walking in wild weather?). 

A great day was had in Wagga Wagga (Saturday), Newcastle and Sydney (both yesterday). 

Photos are starting to come in ... check them out on the Down Syndrome NSW Facebook page.

From Chris and Tracey Giles: We had a fantastic time at the Newcastle Buddy Walk. Thanks for organising another great event!

Congratulations and thanks to everyone involved in organising, supporting and participating in each event, and for sponsoring walkers.

Saturday, 15 October 2011

National Disability Insurance Scheme Advisory Group appointments

The Minister for Families, Housing, Community Services and Indigenous Affairs, Jenny Macklin and the Parliamentary Secretary for Disabilities and Carers, Senator Jan McLucas today announced the appointment of the National Disability Insurance Scheme Advisory Group.

The Advisory Group will help steer the development of a National Disability Insurance Scheme by providing advice on progress with the foundation reforms required to fundamentally improve the system of care and support for Australians with disability and their carers.

The new appointees to the Advisory Group are Dr Ken Baker, Dr Lorna Hallahan, Ms Joan McKenna-Kerr, Mr Brendan O’Reilly and Ms Fran Vickery.

The new appointees will join the Advisory Group Chairman Dr Jeff Harmer AO, Dr Rhonda Galbally AO and Mr Bruce Bonyhady AM.

The Advisory Group brings together a wealth of knowledge about the experience of people with disability and carers, the challenges for the service sector and government administration.
The group includes people with expertise in social insurance principles, disability policy, service provision, performance monitoring, training and curriculum development, academia and research, psychological and intellectual disability, indigenous disability services, young people and children with disability.

The Advisory Group will work closely with all governments as they work to deliver foundation reforms in preparation for a National Disability Insurance Scheme.

Foundation reforms include developing common assessment tools, so that people's eligibility for support can be assessed fairly and consistently, based on their level of need, no matter which state or territory they live in.

The reforms also include service and quality standards so that people with disability can expect high-quality support; building workforce capacity so we have more trained staff to support people with disabilities; and developing rigorous timelines, milestones and benchmarks to support the delivery of these and other foundation reforms.

These reforms were recognised by the Productivity Commission in their report into the long term care and support of people with disability as a necessary precursor to a National Disability Insurance Scheme.

The Advisory Group will work with the disability sector and conduct a series of community workshops around the country.

They will be supported by expert working groups to provide technical expertise and advice on specific elements of reform.

More information on the National Disability Insurance Scheme is available at

National Disability Insurance Scheme Advisory Group:

Dr Jeff Harmer AO
Dr Harmer has occupied a range of executive positions in the Australian Public Service. He was appointed Secretary of the then Department of Family and Community Services in October 2004. In 2008 Dr Harmer was appointed as a member of the panel to review Australia's Future Tax System. Dr Harmer retired from his role as Secretary in the Department of Families, Housing, Community Services and Indigenous Affairs in 2011.

Dr Rhonda Galbally AO
Dr Galbally is currently the Chair of the National People with Disabilities and Carer Council. Dr Galbally has made unique contributions to Australian and international social development by establishing new organisations and programs for Australia and the world, from concept to operational success. These include the ‘our community’ website, a hub of resources and support for Australia's 700,000 community organisations. Dr Galbally was a member of the Independent Panel appointed to advise the Productivity Commission and Government during the Inquiry into long-term care and support for Australians with disability.

Mr Bruce Bonyhady AM
Mr Bonyhady is President of Philanthropy Australia. Mr Bonyhady is the Chairman of Yooralla and Chairman of the Advisory Panel to Solve! at the Royal Children's Hospital. He was a Member of the Disability Investment Group, the Reference Group for the Pension Review and the Convenor of the Independent Panel appointed to advise Productivity Commission and Government during the Inquiry into long-term care and support for Australians with disability.

Dr Ken Baker
Dr Baker has been the Chief Executive of National Disability Services since 2000. In that role he provides advice to governments and information to service providers on a broad range of disability policy issues. Among other groups, he is a member of advisory committees to the federal Minister for Workforce Participation and the Minster for Ageing. He has worked in areas of social policy development and public affairs for more than 25 years. He received a Centenary Medal for work in relation to disability services.

Dr Lorna Hallahan
Dr Hallahan has specific expertise in disability systems reform, the ethical consideration of disability services and safeguarding people with disability from abuse or harm. Dr Hallahan is currently Senior Lecturer in Social Work at Flinders University, and has advised governments in a variety of forums including the Pension Review, the SA Social Inclusion Board and as Chair of the Disability Advisory Council in South Australia.

Ms Joan McKenna-Kerr
Ms McKenna-Kerr is Chief Executive Officer of the Autism Association of WA, an organisation funded by the State and Commonwealth Government to provide specialist services to children and adults with Autism Spectrum Disorder. Ms McKenna-Kerr is Chair of National Disability Services (WA) and a member on the National Board. She is also on the Australian Government Working Group to develop a National Autism Spectrum Disorder Register. Ms McKenna-Kerr was previously a member of the Ministerial Advisory Council on Disability.

Mr Brendan O’Reilly
Mr O’Reilly served as Deputy Director General of the NSW Department of Community Services, Director General of the NSW Department of Ageing, Disability and Home Care and Director General of NSW Department of Premier & Cabinet.

Ms Fran Vickery
Ms Vickery is the Manager of Queenslanders with Disability Network. Ms Vickery has worked as a web developer and research consultant for disability organisations, a health promotions officer at the Woman’s Health Service and has been a lecturer and tutor in the Occupational Therapy Division of the University of Queensland.


Friday, 14 October 2011

Janet Carr: public lecture at ACU Canberra

Australian Catholic University
School of Education Public Lecture

Living with Down Syndrome:
Findings from a 45 year longitudinal study
A presentation and discussion with
Janet Carr, Ph

Monday 31st October 2011 S3 Signadou Building,
ACU Canberra Campus,
223 Antill Street, Watson ACT
(Accessible venue. Please advise us if you have particular access requirements.)

5:30pm Refreshments
5:50pm Welcome – Miss Ruth Faragher
5:55pm Opening – Senator Sue Boyce
6:00pm Lecture – Dr Janet Carr
Questions and further refreshments
7.00pm Close

Dr Janet Carr has led one of the most remarkable studies on Down syndrome in the world – lasting almost half a century. All the babies born with Down syndrome in one year in one part of South East England have been seen at intervals from infancy to middle age. They were seen in their own homes and given tests of intelligence, language, academic subjects (reading, writing and arithmetic) and, latterly, tests of memory. The findings from the studies of both the people with Down syndrome and
from the families will be discussed in this public lecture.

About Janet Carr
Dr Janet Carr is an eminent researcher in Down syndrome. Until her retirement in 1992, was regional tutor in the Psychology of Learning Disability at St George’s Hospital, London. She is a Fellow of the British Psychological Society, was on the BPS Board of Examiners from 1985-86, and a Dissertations Examiner for the Society's Diploma in Clinical Psychology from 1988 to 2002. Currently she is chair of the BPS Welfare Fund.
She is a member of and Assistant Editor for the British Association of Behavioural and Cognitive
Psychotherapy. Apart from Down syndrome, her main interest has been in the use of behavioural methods in the teaching of people with intellectual disabilities, and she has been Behavioural Advisor to the Down's Syndrome Association UK since the late 1980s. She has written about 60 book chapters and papers in peer-reviewed journals, and 6 books. Janet has received numerous awards and acknowledgments of her research including the 2009 Jo Mills Research Award.

RSVP: Rhonda Faragher by 28th October 2011
p: 02 6209 1142

PECS training, Sydney: October 2011 and 2012 listings

October is a busy month - we have Down Syndrome Awareness Week coinciding with Carers' Week (next week) and the whole month has been declared  Augmentative and Alternative Communication Month - this link includes the Coffee Shop Communication Challenge and other AAC awareness activities.

A Down Syndrome  NSW member has recently attended a Picture Exchange Communication System workshop with Pyramid Educational Consulting, and highly recommends it. PECS is a well established alternative communication option for people with autism and related disorders, including some people with Down syndrome.

The next Pyramid PECS Basics Training session in Sydney is on 27th - 28th October.  Details here.

Listings for all coming events, into 2012 are here.

Thursday, 13 October 2011

Buddy Walk Wagga Wagga: all set for Saturday 15th

Wagga Wagga's Buddy Walk this Saturday kicks off the NSW round - local organisers and supporters are ready, and everyone wishes for great day.  Especially after last year's walk had to be cancelled because of major flooding. Kym Errington and John Jones and their family have helped local media focus on the event preparing for a fun and relaxing community day - as described in this Riverina  Leader article, and this report on Prime TV

Have a wonderful day, and send in those photos!

Mainstream research that might be important for people with Down syndrome and their families

While we are very interested in research specifically related to people with Down syndrome, other more general studies can also provide very valuable information about particular aspects of the impacts of Down syndrome.  Two such studies have been released in the last few days:

Babies learning more than one language
The New York Times reported about new research about babies being exposed to bilingual environments, and how their brains adapt.  In a multicultural community like ours, questions are often asked about whether children with Down syndrome can develop language skills in more than language. The growing body of specific research and reports from families indicates that not only is it possible but desirable, for both languistic and cultural considerations.  The work reported by the NY Times adds information about how babies manage two languages that seems to support that bilingualism should be available to children with Down syndrome too.

New York Times article: Hearing Bilingual: How Babies Sort Out Language

(The article was republished by the Sydney Morning Herald today, too, under the headline Wired for sound: bilingual parents can shape baby's brain).  This research was done at the University of British Columbia, Canada.

A summary of research into bilingualism and children with Down syndrome, Raising children with Down syndrome to speak more than one language, was published in the December 2010 issue of Voice.

Link between Alzheimer's disease and disrupted sleep?
The second study is about links between Alzheimer disease and disrupted sleep patterns - both of which are more common in older people with Down syndrome.  The Adult Down Syndrome Clinic in Chicago commented on Facebook:
Here is an interesting article on sleep deprivation being associated with Alzheimer disease. How is that related to Down syndrome? We don't know. There is no information yet but we know that people with DS are susceptible to AD at a younger age. We know that people with DS have more sleep problems. We also know that people with DS have more disrupted sleep due to sleep apnea. Will be interesting to watch this one as more information becomes available. 

This research was done at the Washington  University School of Medicine.

The Right Start Foundation: bowling fundraiser

6 pm Thursday 27th October 2011
AMF Bowling Centre
Macarthur Square.

Community members are invited to have some fun, along with raising valuable funds to build the first Specific Centre for the needs of people with Down syndrome.

We are looking for teams of a maximum of 6 people to enter for 3 games shoe hire and nibbles, at a cost of $50 per person.

To make the competition a little more interesting we are asking participants to be sponsored either on or by using our sponsor books.

Participants can be sponsored by how many strikes or gutter balls or just by bowling in general.
There is no pressure, this is an event for awareness as well as fundraising, just have fun.
There will also be prizes on the night of course for highest score lowest score, etc.

You can simply enter by returning the application form, and please let us know if you require the sponsor book or if you will be sponsoring online.

Look forward to seeing you there,
Kind Regards,
Glenda Graban
Fundraising Coordinator for The Right Start

Wednesday, 12 October 2011

Northern Beaches: Calling all Kids to the Halloween Dance!

Come dance with the locals and celebrate Down Syndrome Awareness week in style!

Every week Pittwater RSL hold a free kids disco for kids 2-12 and on the 21st October from 6:30-8:30 we are getting all the local kids with Down Syndrome involved by coming and inviting all their friends and siblings.

It is a Halloween special night where you're invited to dress up and a special dance host will be there to get you all moving and grooving.

A donation box will be at the sign in so you can show your support for Down Syndrome NSW who do so much for supporting the Down Syndrome community with information, courses, weekends away and much more.

Please be aware children must be parent supervised and as this is a Pittwater RSL regular event not just for the DS community and it can get busy with up to 100 kids there, so I suggest beat the rush, get there at 6 and grab some dinner first!

For more details go to the
Pittwater RSL site or Down Syndrome NSW for info.
(Thanks to Katrina Ginsburg for this information)

Research report: diagnosing autism in children with Down syndrome

A long term study at the highly regarded Kennedy Krieger Institute in Baltimore confirms "that the Diagnostic and Statistic Manual of Mental Disorders (DSM), the gold-standard for the classification of mental health conditions, can be used to accurately identify autism spectrum disorders (ASD) in children with Down syndrome.

The researchers were able to accurately distinguish three diagnostic groups:
  • Down syndrome (DS): children with DS, but no significant behavioral problems that would warrant the diagnosis of a coexisting mental health condition
  • DS + ASD: children with DS and autism spectrum disorders
  • DS + Disruptive behavior disorder (DBD): children with DS and DBD, characterized by temper tantrums, physical aggression, excessive argumentativeness, stealing and other forms of defiance or resistance to authority
“The most telling result of our study is that we were not only able to clearly identify patients with Down syndrome and ASD, but also distinguish two other behavioral categories – those without major behavioral problems and those with disruptive behavior disorder (DBD), a widely recognized group among individuals with Down syndrome,” says Dr. George Capone, study author and Director of the Down Syndrome Clinic at Kennedy Krieger.

Capone initiated the study in 1992 when few biomedical researchers were interested in studying the connection between the two disorders. Remarkably, the parents of patients in Kennedy Krieger’s Down Syndrome Clinic joined Capone in his effort by funding the study with their individual gifts. Capone recalls, “Parents would travel from around the country and the world to be seen here because few other institutions were committed to understanding this dual-diagnosis. Once we gave these families validation that their child was indeed different and required different support strategies than a typical child with Down syndrome, they wanted to help other families access this knowledge.”

Read the full news release from Kennedy Krieger here.

The abstract of the report to be published in the Journal of Intellectual Disability Research is available online here, along with options for purchasing the full text of the article.

Autism spectrum disorder in Down syndrome: cluster analysis of Aberrant Behaviour Checklist data supports diagnosis
N. Y. Ji, G. T. Capone and W. E. Kaufmann, Journal of Intellectual Disability Research
Article first published online: 30 AUG 2011 | DOI: 10.1111/j.1365-2788.2011.01465.x

Tuesday, 11 October 2011

Buddy Walk video: We get by with a little help from our friends

Check out our Buddy Walk video, and feel free to share with friends!

This year's theme, as you all know, is We Get By With a Little Help From Our Friends ... so enjoy! You might even find a picture of yourself if you've attended in recent years! 

If you like the singer, you'll want to know that it is our own very talented Jess Chalker, who lives a musician's life, as well as working on communications for Down Syndrome NSW.

Buddy Walk registrations are open until the day of each event - register online here.

Buddy Walk - Australia 2011 flyer





For all enquiries, contact Priscilla at Down Syndrome NSW on 9841 4404 or

AART.BOXX 2011: Framing Gravity,

Framing Gravity, the title of this years AART.BOXX exhibition, has been drawn from the wide-ranging creative and material concerns offered by selected artists as well as the social frame of disability in which the exhibition is set. The exhibition features artists working across a range of mediums including spoken word, works on paper, textiles, video and sculpture.

Framing Gravity is the 5th edition of the AART.BOXX project. The exhibition is presented by Accessible Arts and held at SCA Gallery, Sydney College of the Arts, the University of Sydney (Balmain). Since its inception in 2006, AART.BOXX has become a significant national project and exhibition series with a focus on recent works by Australian visual artists with disability.

One of the selected artists is Joceline Lee, from Melbourne - see more about her work here and here.

Exhibition dates
21 October – 5 November 2011

Opening night
20 October 2011, 6:00 – 8:00pm

For all details, visit the AART.BOXX page on the Accessible Arts website.  

Monday, 10 October 2011

Postcards from Europe (2)

Our second postcard from Hannah and Kit's family on their European Grand Tour - if you missed it, the first one is here.

We are having a great time in Paris. It is such a beautiful city even on a rainy day like today. So far the twins favorite spots have been the Tour Eiffel (Hannah) and the Musee D'Orsay (Kit).

The Eiffel Tower staff were very helpful when we asked about accessibility for Hannah, in allowing us straight through - no queuing up - which was great. Little brat loved it as well as the icecream she had afterwards. She still points it out excitedly when we see it in the distance.

The Louvre is an impressive building but not so helpful and with the crowds all ignoring the 'no camera' signs I was a bit put out when we were chipped twice for silly things such as Hannah sitting down (her legs are quite short) with one foot crossed - no shoes on the chairs.

The Musee D'Orsay was much better for us and the art was fabulous. As we had children we were immediately sent to the shorter queue, the one that did not stretch out into the rain.

We have found the French to be tolerant and more often than not, generous with our fumbling and poor French. There are some wonderful green areas but we have not really had the chance to take the kids to a playground, lucky they love coloring in. Which Mona Lisa do you prefer?

My favorite place was the afternoon trip to Giverny. It was good to see some of the lush French countryside and we all loved roaming through the absolutely enchanting garden at Monet's house. A beautiful and relaxing outing.

The sleeping patterns of the kids has just gone downhill in the last day or so so I am not sure if it is a delayed form of jet lag but I can say it isn't very pretty. Hopefully they will settle back into routine soon.

Soon we will fly to Venice. I am sure my carbPrincess will love Italy, the place of pasta, pizza and gelato. How could a little girl not love it? Kit has been learning Italian at school and is keen to put some of his skills to use.
I am sad that we will miss the Buddy Walk this year. I hope the sun shines on a great day for you all.

Au revoir

PS With less child focussed things to do we have been watching Ratatouille in our apartment (which does not offer views of the tower but is near the Arc de Triomphe). The ambience of the drawn curtains of our living area are fantastic, so Phil and I get to enjoy the atmosphere and the kids get to wind down.



All members and affiliate members are invited to attend
the 32nd Annual General Meeting of  Down Syndrome Association of NSW Inc
(Down Syndrome NSW) 

Friday 28th October at 6:30 pm

‘The Shed’
Down Syndrome NSW80 Weston St
Harris Park NSW 2150

RSVP: This event is free. If you intend to attend the Annual General Meeting please RSVP by Wednesday 26th October to assist with catering and event planning by:
• POST   -  Down Syndrome NSW, PO Box 9117, Harris Park 2150
• ONLINE  - at 
• PHONE   - 02 9841 4444
• EMAIL  -

PROXY VOTING: If you cannot attend, and you are a financial member (excluding affiliate members) you may lodge a proxy form, by:

• POST    - returning the completed proxy form to Down Syndrome NSW, PO Box 9117, Harris Park 2150
• ONLINE - at
• EMAIL  - scanning and emailing a completed proxy form to

Please note: proxy forms must be received by the Public Officer (Chief Executive Officer) by at least 24 hours prior to the AGM, otherwise will be ruled invalid.
Further information, including the AGM Papers, Proxy Form and Nomination Form for Board Positions are available from the Down Syndrome NSW website

Friday, 7 October 2011

Aboriginal Consultation Dates - Person Centred Approach: October-December 2011

The Aboriginal Disability Network NSW is conducting state-wide Consultations for Aboriginal people with disabilities, their families and carers on Person Centred Approaches in disability support on behalf of the NSW Government.

§ Tuesday 18th October – Narrabri

§ Wednesday 19th October – Moree

§ Thursday 20th October – Walgett

§ Monday 24th October – Coffs Harbour

§ Tuesday 25th October – Kempsey

§ Wednesday 26th October – Nambucca Heads

§ Tuesday 8th Nov – Sutherland

§ Thursday 10th Nov – Bankstown

§ Tuesday 15th Nov – Albury

§ Wednesday 16th Nov – Griffith

§ Thursday 17th Nov – Wagga Wagga

§ Tuesday 22nd Nov – Gosford

§ Wednesday 23rd Nov – Newcastle

§ Monday 28th Nov - Dubbo/ Port Macquarie

§ Tuesday 29th Nov - Condobolin / Taree

§ Tuesday 6th Dec – Orange

§ Wednesday 7th Dec – Parkes

§ Tuesday 13th Dec – Grafton

§ Wednesday 14th Dec – Casino

§ Thursday 15th Dec – Ballina

§ Friday 16th Dec - Tweed Heads

For more information please contact the office of the Aboriginal Disability Network NSW on 02 9519 5005 or

Download: Flyer

For more information: click here