Friday, 18 April 2014

Latest additions to our 'Events' pages

Down Syndrome NSW events:

Four T4321 High Tea teapots are now up for auction on Ebay

Other 2014 events:

Holiday Dance Workshop
Tuesday - Thursday 22nd - 24th April 2014 - Alstonville, NSW

Disability and a Good Life: What does it take?
UNSW Says Who? Public Panel Series
Wednesday 30 April, 2014 - Sydney

Information session on the Compose Study
16th May 2014 - Randwick

Are you ready, Illawarra?
Conference - a joint initiative by The Disability Trust – Sport and Recreation Services, CatholicCare, Interchange Illawarra, Chatter Hands, Wollongong City Council and NSW Government
Friday 16th May 2014 - Wollongong

Keeping Carers Connected
Australian National Carer Conference
16th - 18th November 2014 - Gold Coast

Thursday, 17 April 2014

T4321 around NSW, for World Down Syndrome Day

High Tea teapots up for auction on Ebay

As part of the World Down Syndrome Day celebration this year a number of artists generously donated their time and skill to paint 10 teapots to be auctioned.
Kara Prior's tea pot

At the High Tea held at the State Library we auctioned six of the teapots, the Hon. John Ajaka, minister for Disability Services acquired one. This means that four were retained so that we could offer them for purchase to people who were unable to attend.

Four teapots are now up for auction on Ebay. Click on your favourite teapot to make a bid or visit the Down Sydnrome NSW Ebay Store.

T4321 St Patrick's College, Sutherland 
For some years the staff have supported the fundraiser to celebrate Down Syndrome Awareness Day. The morning tea was prepared by the Yr 11 Hospitality Class and the staff were invited by the young hosts Miss Sarah Clark (daughter of Mary Givney-Clark & David Clark) and Miss Ava Bulmer (daughter of Anthea & David Bulmer). The staff value the opportunity to foster greater community acceptance and understanding of people with Down Syndrome. They raised $620!

Yr 11 hospitality students showed their skills in style.

T4321 Cobar
A High Tea fundraiser was held last Sunday March 30 in Cobar, western NSW. 20 ladies helped to raise $800.

Pictured are Michelle, Sharon, Carly and Tahnee at the High Tea.
We called our group Danny’s girls in honour of our 8 year old friend Danny who has Down Syndrome. Danny is a well-known ‘celebrity’ in our town and his mum, family friends, teachers and others were keen to ‘frock up’ for the fundraiser to help a good cause.

This was our second high tea fundraiser for DS and we’ve also previously hosted a ‘Buddy Walk’.

Library Thursday: 17th April 2014 - on reviewing books about people with Down syndrome

Our colleagues at the (US) National Down Syndrome Congress, have developed a set of criteria for reviewing the many books and other resources that they are asked to evaluate and promote, published in the current issue of Down Syndrome News.  They would be useful for choosing books to purchase for your own library, or recommendations for others:

... Our goal is to present books here that will directly benefit our primary reader: parents and family members. Some criteria we consider when reviewing books are:
• Does the publication promote a positive image of people with DS?
• Does it use people first language?
• Does it enhance the dignity of people with DS?
• Does it avoid stereotyping?
• Does it present accurate information?
• Does it recognize the value of person with DS?
NDSC book review
Gross motor skills for children with Down syndrome (2nd edition), Patricia Winders, Woodbine House, 2013 
Every child with Down syndrome should be evaluated for physical therapy intervention as an infant, and nearly every child with Down syndrome will receive physical therapy services at some point. Pat Winders sees children with Down syndrome exclusively, which makes her a unique expert in treating our children. This book is for you AND for your child’s physical therapist, who will benefit tremendously from Pat’s experience. 
Gross motor development in children with Down syndrome is hindered by low muscle tone, increased joint flexibility, other medical issues, and decreased strength, but physical therapy can help overcome these challenges. It’s not so much about helping our children meet their physical milestones sooner, but helping them meet them in the right way — in a way that will serve them best as they grow. As Pat writes, “There are certain crucial results that need to be accomplished early in your child’s development so that he will have a body that is fit and functional throughout his life.” The focus in physical therapy should be on how and what your child learns, not how fast she learns it. (A hard lesson for all parents who like to meet those milestones!) 
This book is for parents of children from birth through early elementary school, and we recommend you share it with your child’s physical therapist. The information here can be read cover to cover, but also as a resource when you need help on a specific area or skill. It’s a book you’ll pull off the shelf again and again as your child learns new things. SJ

Patricia Winders specialises in the gross motor development of children with Down syndrome. She works at the Sie Center for Down Syndrome at Children’s Hospital Colorado in Aurora, Colorado. She speaks about gross motor skills nationally and locally and serves on the Professional Advisory Committee of the National Down Syndrome Congress. (

Members' library
The Down Syndrome NSW library catalogue is available to view here.  

Wednesday, 16 April 2014

Submissions now open for Australia’s only arts and disability conference.

Creative Connections'
Tuesday 28 and Wednesday 29 October 2014
The Concourse, Chatswood

Arts Activated brings together leading thinkers, artists, advocates, practitioners and producers, with and without disability, from across Australia and overseas. Working together to strengthen Australia’s arts and disability sector. 
Accessible Arts is calling for proposals for papers, performances or workshops that address the 2014 conference theme, Creative Connections. 
The theme Creative Connections invites everyone to present on their chosen topic in ways that facilitate creative connections, with and among, the delegates. You can choose any topic related to people with disability and art, but you need to present in ways that encourage interaction.

Proposals can be in written, audio or video formats. All proposals must be submitted through Smartygrants by Monday, 28 April 2014, at 5pm.
  • Further information and links to online submissions, here

Online forum on education and funding reforms open for 2 weeks

Children with Disability Australia has launched an online Facebook forum on education and funding reforms. The forum will run for two weeks, and can be accessed here.

CDA is currently working on an issue paper focusing on future funding for students with disability. We are seeking input about experiences of education of students with disability and views about future reform.

The Australian Government is currently developing a number of education reforms. These include implementing the reforms under the Australian Education Act 2013, national consistent collection of data, More Support for Students with Disability initiative and action regarding the Disability Standards for Education.

Right now, you have the opportunity to contribute your views and ideas.

Tuesday, 15 April 2014

Down Syndrome News, Spring 2014 issue online

Down Syndrome News is published by the (US) National Down Syndrome Congress
30 Mansell Court, Suite 108, Roswell, Georgia 30076
NDSC generously makes its newsletter archives freely available online, here.

The current issue is now available online:

Down Syndrome News, Vol 37, Spring 2014

Feature articles:

“To the moon”, Bret Bowerman
“You’ve probably seen them bagging groceries,” said the geneticist attempting to explain to my wife and me that our one-day old daughter, Ellie, had Down syndrome and what that meant for her future. Her age was measured only in hours and already, expectations for Ellie’s potential had been capped ...
In English, and in Spanish

Speech Intelligibility: Factors Affecting Understandable Speech (Part One), Libby Kumin
Children, adolescents and adults with Down syndrome have a lot to tell us. But, many times, we cannot understand what they are saying. Speech intelligibility is the term used to describe whether a person’s speech is understandable to a listener. Intelligibility sounds like an objective scientific term, but it is not. It is a subjective judgment made by a listener which can be affected by many factors ...

Book reviews

  • Gross motor skills for children with Down syndrome (2nd edition), Patricia Winders, 2013 
  • Raising Henry - a memoir of motherhood, disability and discovery, Rachel Adams, 2013
  • Who's the slow learner? A chronicle of inclusion and exclusion, Sandra McElwee, 2014
  • Wilderness blessing - how Down syndrome reconstructed our life and faith, Jeffrey Gallagher, 2013

Photos for Mothers Day gallery ...

Mothers' Day is celebrated here in Australia on the second Sunday in May - this year that will be Sunday 11th May.  For several years we have posted a gallery of photos of people with Down syndrome and their mothers, contributed by our readers.

If you would like to send a photo this year, please do so, to, by Wednesday 7th May.

We look forward to seeing your photos - thanks.

Monday, 14 April 2014

Two exciting dance/music opportunities with Dean Watson

Ever After Theatre Company at Carriageworks
In association with the Ever After Theatre Company's new production of Social Network Stories we are holding a special one off movement class for people with disability.

Led by movement facilitator Dean Watson and accompanied by renowned percussionist Stuart Henderson the group will explore personal movement responses through a range of percussive sounds and rhythm. Numbers are strictly limited!

Carriageworks Track 8
Saturday 3rd May 2014
 11am – 12.30pm
Cost - FREE

Australian Chamber Orchestra Education: ACO MOVE
ACO Education hosts a series of integrated movement and music classes for adolescents with disability, led by ACO movement facilitator Dean Watson.Over 5 sessions, participants aged 14 -19 years will have the exciting opportunity to become involved with our musicians ... participants will be encouraged to develop an original work of their own.
Students with experience in movement and classical music are encouraged to apply. Numbers are limited. All classes will be held in our Studio at Circular Quay. Classes are FREE of charge and run for three hours. 

2014 Workshop Dates
Saturday 28 June 10am - 1pm
Saturday 5 July 10am - 1pm
Saturday 12 July 10am - 1pm
Saturday 19 July 10am - 1pm
Wednesday 23 July 10am - 1pm
Please note, participants must be available for all 5 sessions.
  • Visit the ACO Move web page for further information, a link to download an application form, and a gallery of photos from last year's ACO MOVE workshops.
To discuss your application and for further workshop details, email

Living My Way: new video from the Aboriginal Disability Network NSW

Aboriginal Disability Network NSW developed the video Living My Way to enhance understanding about disability in Aboriginal communities. Aboriginal people with disability and their families from around New South Wales allowed us to capture their stories to share and create awareness for others living with disability ... view it online here.

Living My Way
Jake Briggs, Ramp Up, 11th April 2014
... Many Aboriginal and Torres Strait Islander people do not recognise disability or identify as disabled. So, it is important that the implementation of the NDIS in Aboriginal and Torres Strait Islander communities is led by Aboriginal people.

This is a new conversation in many Aboriginal communities so we need to plan for the long-term to ensure the opportunities are realised and that all people with disability are empowered to participate in a truly inclusive society ...

Jake Briggs is Chairman of the Aboriginal Disability Network NSW and works in the construction industry. He is one of the people featured in the video.

Friday, 11 April 2014

Weekend reading and viewing: 12th - 13th April 2014

Life soars on
Sipping Lemonade, 4th April 2014
... After Kate’s Down syndrome diagnosis at birth, I wondered what the future would hold for our family. Would we have more children?  ... Would life go on? Little did I know ... 

To the typical siblings,
Ellen Stumbo, Finding Beauty in Brokenness, 9th April 2014
... You can be annoyed by hands pulling at you, and suddenly be a willing participant in the biggest, sweetest embrace that any siblings could ever share. I see the love in your eyes for your sibling, and I cannot believe that the two of you can share this kind of love. It’s not typical, but it runs so deep, and it reflects a quiet strength in you that brings me to tears ...
I stood up for my son today and it felt good
Embracing Wade, 5th April 2014
... sometimes I feel like I talk the talk rather than walk the walk. It’s one thing to tell the world from the safety and comfort of my couch about respect for people with disabilities and it’s another thing entirely to tell it to someone’s face ...
Sally Felkai, Down Syndrome Research Foundation, 8th April 2014
... I stand watching my dear girl with her pals, having the best time. I see that she is not like them but she is also not that different. They all play together and all a little apart from each other. They wander around and find things they are interested in ...
The Happy Soul Project, 8th April 2014
... Pip has a lot of what these definitions state but she is not defined by it. She is more than low muscle tone, heart defects, and facial features ...

Real Friends?
sassysoutherngal, 9th April 2014
Rachel came home from school yesterday and started asking me questions. “Were you invited to birthday parties when you were growing up, mommy?” ...

Why closing Stockton Centre divides disability advocates: opinion
Sue O’Reilly, Newcastle Herald, 7th April 2014
Around Australia, disability rights activists are baying for the closure of the Stockton Centre, attacking the motives and integrity of anyone fighting to keep it open.

Few, if any, have ever visited the place. Few, if any, have the slightest idea what conditions are like for the 400 or so intellectually disabled people now living there. It could be a Dickensian hell-hole or Newcastle's answer to Club Med. For disability advocates, however, it's completely irrelevant ...

People with Down syndrome in the media

Published on Apr 8, 2014
Trailer for The Talented Mr Digby ...  a feature length observational documentary that follows 26-year-old Digby Webster, a talented Sydney-based artist, on his journey to becoming independent. The film is being made by EDK Productions.

Adults 'Latch-On' to new jobs
The Clare Champion (Ireland), 29th March 2014
Two years ago, the Clare branch of Down Syndrome Ireland became one of the first groups in Europe to introduce the first literacy program for young people with Down syndrome, entitled Latch-On: Literacy and technology hands-on ...
Childhood sweethearts who both have Down syndrome to marry nearly 30 years after their mothers met at support group for children with disabilities
Jessica Jerreat, Mail Online, 3rd April 2014
When Austin Wayne Underwood proposed to his girlfriend Jessica Smith, it marked a celebratory milestone for the Texas couple, who both have Down syndrome. Austin and Jessica first met when they were three years old, after their mothers connected through a support group for children with disabilities ...

Overcoming the stigma of Down syndrome
Fred Dickey, U-T San Diego,7th April 2014
... Karen still has Down syndrome — you don’t lose that — but no longer does it seem a calamity. But what you can lose, because Karen did it, is the stigma attached ...

David Park, an American professional photographer has put together a tribute to 12 people with Down syndrome (including his own son) for World Down Syndrome Day 2014.  Their stories and photographs are here.

Thursday, 10 April 2014

Library Thursday: 10th April 2014

New in our collection
Equity and Full Participation for Individuals with Severe Disabilities - A Vision for the Future, Martin Agran et al (eds), Paul Brookes Publishing, 2013
What key issues and challenges affect the lives of people with severe disabilities today—and what should tomorrow’s professionals do to address them? 
Aligned with the core values and agenda of TASH, this visionary text prepares professionals to strengthen supports and services for people with disabilities across the lifespan. Readers will fully examine more than a dozen critical topics in the lives of people with severe disabilities; explore necessary reforms to policy and practice; and set clear goals and priorities for improving early intervention, education, health care, behavior supports, and social services.  
Whether used as a textbook or a professional reference, this innovative volume will help usher in a new era of services that support full inclusion and quality of life for people with severe disabilities.

Siblings: 2nd edition
A new edition of Siblings, by Kate Strohm has been released in print and as an e-Book available from Siblings Australia or Wakefield Press.

Members' library
The Down Syndrome NSW library catalogue is available to view here.  

World Down Syndrome Day : high tea at the State Library of NSW

Extract from Julie Cromer's speech at the 2014 World Down Syndrome Day high tea, held at the State Library of NSW. Renaming of the Down Syndrome NSW library as The Julie Cromer Library Resource Centre was announced by the Hon. John Ajaka, NSW Minister for Disability:
"Our library has been growing for over 35 years and now houses a significant and comprehensive collection of books, journals and resources about Down syndrome. In fact the collection is the only major resource on Down syndrome in Australia, and numbers over 2000 items. And it has now been catalogued. 
You may well ask why the collection was not catalogued before? The library of DS NSW has never received any funding, not for staffing nor the purchase of resources: so we have creatively managed with support from a grant here and there and donations from user members. 
Recently, when Vice President of the Association I saw that the collection was in danger of fragmenting, so we had to catalogue this important collection, now, to preserve it and house it in appropriate library management software. So what was the way forward here? 
I phoned the State Library NSW. I was happily connected to Barry Nunn of Policy and Partnerships. Barry then contacted TAFE Sydney Library and Information Services Head Teacher, Jo-Ann Bathurst, who advised that two of their top cataloguing students had just graduated: Jillian Seymour and Yan Ling Fen who volunteered to take part in the project." 
We have just heard that Jillian Seymour has received the CreatIT Industry Achievement Award from Sydney TAFE for her work with us in the Library and has been nominated for the State Award as well. Down Syndrome NSW wishes to congratulate Jillian and thank her again for her outstanding volunteer contribution to our library.

Down Syndrome NSW e-Update: #1, April 2014

Wednesday, 9 April 2014

New resources on sexuality/sex education and assessing consent

New additions to the growing body of good quality information and resources about sexuality education designed to specifically meet the needs of those with intellectual disability are always welcome.  These two are the latest to come to our notice, both are freely available:

Sexuality education is vital for teens with intellectual disabilitiesLeslie Walker-Hirsch, Expert Beacon
... Many parents ask, “Does my child really need sexuality education?” The answer is an emphatic yes. A person with a cognitive, intellectual or developmental disability needs the same information about sexuality that everyone else needs in order to be a safe, healthy and responsible member of the community. This article provides first steps for parents and teachers--and clears up some misunderstandings about social and sexual development of individuals with intellectual disabilities ...

The release of a useful and necessary new assessment tool was announced on Dave Hingsburger's blog, Rolling Around in My Head, yesterday:  
Two agencies, Vita Community Living Services and The Centre for Behaviour Health Science, have worked together since November 23 of 2012 to create a new assessment tool: The Assessment of Levels of Knowledge - Sexuality and Consent (TALK-SC).  
The tool can be used as a pre/post test for sex education or relationship training classes. It also can be used to determine if a person with an intellectual disability can give consent in the area of sexuality and relationships.   
The tool is designed such that if someone, undergoing a consent assessment, does not pass, the score will give information that will allow education to be pinpointed to the exact areas of need. TALK - SC will be released tomorrow, free of charge.  
Any clinician, educator or agency who wishes a copy of the assessment tool may simply request one by sending an email to
The Down Syndrome NSW members' library holds several books and videos useful for supporting sex/relationship education for people with Down syndrome from an early age.

Compose Study - information session, Randwick

The Compose Study is recruiting participants with Down syndrome in NSW now.  Information sessions are also scheduled for other states:

Tuesday, 8 April 2014

News and commentary on the NDIS (19)

National Disability Insurance Scheme News, Issue 7, April 2014

‘Meet the Governors of the NDIS’
Judith Ireland, Sydney Morning Herald, 7th April 2014
The head of Australia's peak body for non-government disability services says it is "too early" to call for delays to the National Disability Insurance Scheme. National Disability Services chief executive Ken Baker says that despite a recent report that identified problems with the agency implementing the NDIS - such as an IT system that was not fit for purpose and a lack of clear guidance to staff - none of the problems were "insurmountable" ...

NDIS delay is not OK
Dr George Taleporos, Ramp Up, 1st April 2014
Findings from a recent review of NDIA capabilities have led to speculation that the NDIS rollout could be delayed beyond 2019. Dr George Taleporos says although the review is useful in alerting us to current challenges, it should not be used to justify a longer timeline for implementation.

AAP/The Australian, 31st March 2014
WesternAustralia has officially signed up to the national disability insurance scheme, becoming the last state to reach an agreement with Canberra. The WA NDIS My Way trial will begin on July 1 in the South West region, and the Cockburn-Kwinana area will join it in 2015.

Abbott gives states free rein on NDIS
Paul Osborne, AAP/7 News, 31st March 2014
Prime Minister Tony Abbott says he accepts the states want to run disability services their own way. Labor has urged the coalition government to stick to the agreement reached with the states and territories in 2013 to fund launch sites before fully rolling out a national disability insurance scheme by July 2019 ...

Accessible housing: housing, disability and the NDIS - conference report
Resources from the Community Housing Federation of Australia conference held on 27th March 2014, in Canberra

Narda Gilmore, ABC News, 28th March 2014
The full introduction of the National Disability Insurance Scheme (NDIS) is expected to prompt huge demand for disability-friendly housing ...

The NDIS is unaffordable? That argument just doesn't add up.
Bruce Bonyhady, Ramp Up, 26th March 2014
NDIA Chairman Bruce Bonyhady says it's time to set the record straight: not having the NDIS will cost Australian taxpayers more and won't deliver any of the social or economic benefits ...

National Disability Insurance Scheme rolling out as planned
Nance Haxton, PM (ABC Radio), 26th March 2014
Two states have moved to allay fears that the rollout of the National Disability Insurance Scheme could be delayed after a critical review of its progress.

$2.8 million to support services transitioning to the NDIS
NSW Ageing, Disability and Home Care (News), 24th March 2014
Minister for Disability Services John Ajaka today visited Connectability in Hamilton and announced a $2.8 million NSW Government Fund to assist disability services providers transition to the National Disability Insurance Scheme (NDIS) ...

Labor rolled the dice on disability care
AAP (via SBS News) 24th March 2014
The Gillard government did not have the patience to follow a Productivity Commission timetable for rolling out the national disability insurance scheme ...

Movie premiere at Dallas Film Festival

The premier screening of the feature film, Produce, sold out on Sunday 6th April at the Dallas International Film Festival.
In St. Matthews, Kentucky, Calvin is a professional baseball player reeling from the curveball life has thrown him. Forced into an early retirement due to his panic attacks at the plate, he sleepwalks through his days and struggles to raise his teenager daughter. But one day he suddenly feels awakened, his life invigorated by the most unlikely person: Produce, a kid with Down syndrome who works at the local grocery store. 
David DeSanctis
Calvin slowly loses the chip on his shoulder as he begins to see the world through Produce’s eyes. Family, faith and purpose work their way back into Calvin’s life as their friendship develops. The unlikely pair becomes intertwined in a way that gives them both new meaning and purpose in the wake of past bad decisions. The result is a film about finding redemption through faith, hope and love.
James Faust, DIFF website

  • See the trailer here
  • Read lead actor David DeSanctis's profile on IMDB here
  • Produce on Facebook.
Watch out for any mention of a local screening, and share the news!

Monday, 7 April 2014

Beach ...

With the end of daylight saving yesterday in New South Wales, summer really is done, and we are into lovely, cooler autumn, while these photos from our 2014 calendar remind us that beach days are not necessarily done, and will be back. What keeps you busy in autumn?

Thank you for continuing to support our calendar by sharing your photos each year.

Latest issue of Service, Support and Success

Latest issue of Service, Support and Success
Service, Support and Success is a monthly Canadian newsletter designed for direct support workers supporting people with intellectual and developmental disabilities. Volume 3, Issue 4, April 2014: It’s a Juggling Act! Navigating the Emotional Journey of Returning to Work is now available online.

... my new personal growth as a parent has added to the passion and rewards I get through supporting others. I feel proud that I will be able to share the personal and professional values I learn at work with my child. I hope that my child will grow up to understand the importance of hard work and integrity and, above all, will treat ALL people with dignity, kindness and respect” ... 
Service Support and Success is well worth the (free) subscription or a bookmark if you work with or are interested in supporting people with intellectual disability.

Friday, 4 April 2014

Weekend reading and viewing: 5th - 6th April 2014

Health and wellbeing – Access and equality for all on the occasion of World Down Syndrome Day
Panel discussions, United Nations, 21st March 2014
Co-organized by Down Syndrome International, in collaboration with the Permanent Missions of Australia, Brazil, India, Poland and Japan, the Department of Economic and Social Affairs (DESA), the United Nations Children’s Fund (UNICEF), the World Health Organization (WHO) and the International Disability Alliance (IDA).

My teacher of life
Ellen Stumbo, Finding Beauty in Brokenness, 7th July 2012
... I look at Nichole and I am trapped in her eyes, unable to look away, unable to question anymore. The little girl that looks back at me is not broken, and she is not less than perfect. The value of her life is not found in all the things that she will never be, but in the things that she is ...

Mark is not Down Syndrome This short video (2m 18s) was made by Mark's parents to introduce him to the planning group at his school so that they 'can get to know him before deciding his educational services for the upcoming year. Mark just turned 8.'

It has been circulating on the internet this week, with several other families commenting that using a similar approach made a positive difference to how the subsequent planning went. Even if your child's school does not hold a formal Individual Education Plan, a short video might be a very useful introduction for a new teacher or other team members, and help to dispel unwarranted pre-conceptions. Direct link to the video on You Tube.

An Open Letter to Parents of Kids with Special Needs
Meriah Nicholls, With a little Moxie, 24th March 2014
... equal access for your child needs to spill over to equal access for everyone with a disability.
How can you say that closed captions “cost too much” and dismiss the subject – then in the next breath, talk about the supports your child has a right to receive in school? ...

Gillian Marchenko, Chicago Parent, 31st March 2014
When a parent first hears, 'your child has a disability,' it can be shocking, saddening and scary. If you find yourself in this situation, here are a few things you can do that might help ...

Thoughts on Group Service Models for People with Disabilities
Dale DiLeo, Ending Disability Segregation, 27th March 2014
... Understanding how groups function is a key to successful individual community life as well as personal self-worth ...

Artspace is back!

Great news from Beyond the Square, at Riverside Theatres, Parramatta:
Want your own exhibition? Artspace is back!

Digby Webster has exhibited at Artspace
We're opening up TWO exciting opportunities for artists who identify as having disability to have their works exhibited in their own solo exhibition in Riverside's foyer space.

Exhibition 1 dates:  Tuesday April 22nd - Friday May 2nd
 Exhibition 2 dates:  Monday July 14th-  Friday July 25th
Submissions must be received no later than Monday April 14th. 
Past unsuccessful applicants ARE encouraged to reapply.

Thursday, 3 April 2014

Library Thursday: 3rd April 2014

Down Syndrome and Autism resources
Yesterday (2nd April)  was Autism Awareness Day - making this a good time to reprise a review of this book, published just last year:
When Down Syndrome and Autism Intersect - a guide to DS-ASD for parents and professionalsMany helpful books have been written about Down syndrome, and also about autism, but this incredibly useful guide for parents and professionals is one of the first to describe the unique challenges that come with a child who is diagnosed with both ...
... and a reminder that Down Syndrome Australia has established a Down Syndrome and Autism Spectrum Disorder community page on Facebook

Down Syndrome and Autistic Spectrum Disorder: A Look at What We Know 
George T. Capone, M.D., (US) National Down Syndrome Society.

Members' library
The Down Syndrome NSW library catalogue is available to view here.  

National Disability Strategy: online survey for carers - have your say

Carers Australia has been asked by the Department of Social Services to survey unpaid carers of people with disability regarding the implementation of the National Disability Strategy (2010-2020).
... We have created an online questionnaire to capture the views and insights of carers on how people with disability are included in the community, and how they are supported with aspects of their lives such as education and skills development, financial security, personal and community support, health and wellbeing, and rights and justice ...
The questionnaire is completely anonymous and no personal details will be collected. It takes approximately 15 minutes to complete and is open until 22nd April.

Wednesday, 2 April 2014

'Pete the Sheep' holiday musical and workshop: book by Friday 4th April

In partnership with Down Syndrome NSW, Monkey Baa Theatre Company is proud to offer complimentary tickets to the premier production of Pete the Sheep at the Lend Lease Darling Quarter in April 2014. Monkey Baa is one of Australia’s leading theatre companies creating professional theatre for young audiences and their families.

Together with the visit to the theatre to see this brand new musical based on the picture book by Jackie French, Monkey Baa has developed an exclusive one hour workshop after the performance for 20 young people. No previous experience in drama necessary!

The workshops are designed for children to attend by themselves. They will be supervised by staff from Down Syndrome NSW and Monkeybaa Theatre Company. Parents are encouraged to have a coffee at one of the many cafes adjoining the theatre.

Workshop 1: Monday 14th April
1pm show, workshop 2.15 - 3.15pm
For children aged 8-12

Workshop 2: Tuesday 15th April
1pm show, workshop 2.15 - 3.15pm
For children aged 13-17

Monkeybaa Theatre Company, Lend Lease Darling Quarter Theatre
Terrace 3, 1-25 Harbour Street, Sydney

Applications now open and will close: 4:00pm on Friday 04 April. 
You must apply between those dates via email (please advise the workshop you are wanting to attend, and the age of your child).

Bookings will only be accepted by email to Down Syndrome NSW. Monkeybaa Theatre company regrettably will not be able to take any booking.

Should you have any questions please contact Catherine Pedler on 9841 4401.

NDIS webinar #5: meet the governors

The National Disability Insurance Agency presents its 5th Webinar:

‘Meet the Governors of the National Disability Insurance Scheme’

Wednesday 16 April 2014

The fifth highly anticipated NDIS webinar brings together its first studio audience, an online audience from across Australia and the following speakers to discuss and respond to questions from the online audience about the NDIS:
  • Assistant Minister for Social Services, Senator the Hon Mitch Fifield
  • NDIA Chairman of the Board, Bruce Bonyhady AM
  • Principal Member of the NDIA Independent Advisory Council of the NDIA,
    Dr Rhonda Galbally AO

Tuesday, 1 April 2014

Good health: new recommendations on hearing loss in children with Down syndrome, from UK

Information posted by the Down's Syndrome Association (UK):
New evidence indicates that children with Down's syndrome may not compensate for early episodes of glue ear as easily as children who do not have Down's syndrome or overcome its effects on speech and language development. The authors of this important new research highlight the need for speech and language therapy services to be involved as soon as a child is diagnosed with severe, ongoing hearing difficulties and suggest that joint clinics with audiologists could be helpful.
A link is provided to a summary of this study:
Laws, G., & Hall, A. (2014). Early hearing loss and language abilities in children with Down syndrome. International Journal of Language and Communication Disorders. Early View. DOI: 10.1111/1460-6984.12077 

Research news and commentary #5 for 2014

Minister Dutton Cancels Funding For Mental Health Research
NSW Council on Intellectual Disability E-News, March 2014
Federal Health Minister Peter Dutton has cancelled a funding commitment made by the previous government to important research on the mental health of people with intellectual disability.

The Department of Developmental Disability Neuropsychiatry at UNSW put together a partnership in 2012 with various agencies including NSW CID, the Australian Department of Health, NSW Ministry of Health and Ageing, Disability & Home Care (ADHC). Those three government departments each committed $200,000. This led to the National Health and Medical Research Council agreeing to contribute over $1.1M.

It is unclear what impact Minister Dutton’s decision will have on the NHMRC contribution. At least, the NHMRC contribution will be reduced by $200,000.

The research project is aimed at increasing understanding of how service systems are responding to the mental health needs of people with intellectual disability and identifying how responses can be improved.

Minister Dutton’s decision is in line with a number of decisions made by the Abbott Government to cancel commitments of the previous government.

NSW CID advocated strongly to the Minster to proceed with this project and is very disappointed with his decision.

Endeavour Foundation Endowment Challenge Fund 
NSW Council on Intellectual Disability E-News, March 2014
Grants are available for researchers and postgraduate students to undertake research into issues of key importance for Australians with a disability, especially people with an intellectual disability.

Grants are also available for non-profit organisations who wish to expand their current activities to include people with a disability, or deliver innovative projects that enhance social inclusion.

The 2014 grants round opens on 31st March 2014. 

University of Sydney  - Asthma Study
NSW Council on Intellectual Disability E-News, March 2014
Research to develop tools to support people with intellectual disability use medical inhalers effectively
  • 15% of Australians with intellectual disability say they have asthma.
  • Inhalers are a great way to get your asthma medication. Lots of people don’t use inhalers well
  • Researchers want to see how people with intellectual disability use their inhalers and see if there are some ways to use them better.
An Easy English brochure is available. For more information ring Sharon Davis: 02 91141159 or 0411 817 299 or email here.

People With Intellectual Disabilities Get a Say in Drug Trials
Amy Dockser Marcus, The Wall Street Journal, 10th March 2014
Doctors, researchers and drug companies are coming up with simple designs to address a complex ethical dilemma: how to make sure people with intellectual disabilities consent to join a drug trial.

With growing numbers of clinical trials getting under way involving conditions such as Down syndrome and Fragile X syndrome, researchers are trying new strategies to ensure people with the conditions, which typically involve intellectual disabilities, understand the risks and benefits of participating in trials ...

Linda Crnic Institute for Down Syndrome Awards $1.26 Million in Grand Challenge Grants Supporting 13 Researchers
Global Down Syndrome Foundation, 21st March 2013
To commemorate World Down Syndrome Day, the Linda Crnic Institute for Down Syndrome announced $1.26 million in Crnic Institute Grand Challenge Grants to 13 researchers, raising the number of labs at the University of Colorado working on Down syndrome research to 24, and the total labs supported by Crnic to 29 ...

The Compose Study is recruiting participants
Compose (Cognition and Memory in People with Down Syndrome) is a clinical study that will assess the safety and potential efficacy of a compound that could enhance memory, language and learning in people with Down Syndrome.
From the Centre for Applied Disability Research ...

Monday, 31 March 2014

Latest additions to our events pages

Down Syndrome NSW Events:

Scrapheap Adventure Ride 2014
19th - 21st September 2014 - Nymboida

Other  2014 Events:

Applied Disability Research and Evaluation
Centre for Applied Disability Research inaugural conference
26th - 27th May 2014 - Sydney 
Down Syndrome Association of Queensland education conference
18th - 19th July 2014 - Brisbane

Scrapheap Adventure Ride 2014: Nymboida, here they come!

The Scrapheap Adventure Ride is a call to all motorcycle collectors and madcap enthusiasts from around the country to join an extraordinary Aussie adventure and raise much needed funds for kids with Down syndrome.
The challenge for hardcore scrappers is to buy a bike for no more than $1000 and fix it up for an adventure ride through the outback. All motorcyclists are welcome and the ride usually gets a great turnout of classic bikes and sidecar rigs as well.
Over the last four years, the ride has raised in excess of $220,000 for Down Syndrome NSW.
The destination for the fifth Scrapheap Adventure Ride is Nymboida Canoe Centre, located 40km south of Grafton where riders and non-riders can stay and camp on the weekend of 19 - 21 September, 2014. 
Nymboida is a rural village in the Northern Rivers region of New South Wales and is popular for white water rafting. The Nymboida Canoe Centre is situated on the banks of Goolang Creek and the camping ground has 50 acres with cabins and camping facilities. 
There will be plenty of fun for riders and their families over the weekend with activities and ride outs as well as a charity auction.
Down Syndrome NSW Executive Director Tracylee Arestides is delighted to once again be involved with the Scrapheap Adventure Ride.
‘Welcoming a new baby with Down syndrome into the family can be a challenging as well as joyful time,’ says Ms Arestides. ‘With the funds raised by Scrapheap last year our parent support team was able to be there for new families all across the state with information, support and practical advice from birth to starting school.’
In past years sponsors have supported a ride from Sydney to the event destination but most riders choose to begin their journey nearer to home. Individuals or teams can register and raise funds and awareness for Down Syndrome NSW through the website.
The Scrapheap Adventure Ride is the brainchild of Perry Gilsenan, a dad who has had more than his fair share of setbacks but exemplifies making the best of the challenges life throws at us.
Perry lost both of his legs in a train accident in 1976 and shattered his spine and fractured fourteen ribs in a horrific car accident in 1988.
Perry’s story, and the story of the Scrapheap Adventure Ride, was told on the the Nine Network’s Kerri-Anne program, which can be seen online here.
Despite these hardships Perry was inspired to show his young daughter Grace, who has Down syndrome, that no disability can stop you from enjoying a life without limitations.
Last year’s ride involved over 50 riders and raised over $60,000. In 2014, Perry and the ‘Scrappers’ are hoping to raise even more for this truly great cause.
To join the ride, donate, sponsor a bike or for more information, go to or contact Perry Gilsenan at

Media follow-up:
High-resolution images can be downloaded here.
Media Contact: Joel Smith, CDMedia
Email: Phone: 03 9583 8377

Friday, 28 March 2014

Weekend reading and viewing: 29th - 30th March 2014

We're not quite finished with World Down Syndrome Day (21st March) yet, as you will see from some of this week's links ...

What he didn't see
Dave Hingsburger, Rolling Around in My Head, 18th March 2014
She looked up startled. Not frightened, startled, there is a difference. She took two steps back from him, put her finger out towards him and told him, in no uncertain terms, "Back off and leave me alone or I will call security." ...  That man thought he saw a 'good victim' but what he ran into was a 'powerful woman.' ...

'Aha moment' - Victoria
An American TV advertisement features an insightful moment for the mother of a child with Down syndrome.

We should not fear disability
Rachel Leslie, Warwick Daily News, 21st March 2014
... (The) nurses were perpetuating a culture where we fear Down syndrome. They thought it was a negative attribute, something to not be talked about. That disability is something to be feared. The more we talk about Down Syndrome the more we will see there is nothing to fear ...

Why I Didn't Wear The Socks
Big Blueberry Eyes, 25th March 2014
Down Syndrome International (DSi) came up with a sock theme for World Down Syndrome Day. Last year it was initially called "Odd Socks" campaign. I scratched my head over that one because I didn't understand the message that was being conveyed, or that was supposed to be conveyed. I didn't want to promote a theme of "Odd" with celebrating Down Syndrome Awareness Day ... We all participate and celebrate in awareness campaigns in our own way. This is just the reason I didn't participate in the Lots of Socks campaign ...

On Down Syndrome Ireland's Facebook page this week:
The beautiful song 'Lily Ann' was written about a little girl with Down syndrome from Waterford. The song was recorded by Eurovision winner Charlie McGettigan and is available on iTunes. 
"We are so honoured and delighted to have a song written about our beautiful little girl ..." (Lily Ann's proud parents).
Esther Leung, Friendship Circle, 17th March 2014
Every grandparent looks forward to the relationship that will develop with his or her grandchild. No matter where your child is developmentally or what their learning needs are, the need for loving and caring adults in his/her life will always be an inherent need.

Practicing pride in the face of exclusion
Stella Young, Ramp Up, 24th March 2014
Despite relentless talk of 'inclusion', many people with disabilities repeatedly find ourselves all dressed up with nowhere to go, writes Stella Young ...

People with Down Syndrome in the media, on social media

Matthew Lloyd and Oliver
Many articles, photos and videos have been published during the last week, in association with World Down Syndrome Day - see our posts over the last two weeks for more:

Hayley Rose Photography's beautiful series of photos of Dirty Feet at Shopfront 
Dirty Feet, 21st March 2014
 - featuring Chris Bunton in the recent 'Out of the Studio' performance.

Kroger worker breaks down barriers for those with Down SyndromeEmily Longnecker,, 13th March 2014
It's an untapped labor force more employers are discovering every day. People with disabilities are breaking down barriers on the job ...

Event to celebrate World Down Syndrome Day
Matthew Dixon, Ballarat Courier, 19th March 2014
Kesiah Glenane works two jobs, lives on her own and is an avid swimmer, basketballer and golfer ...

Chris's K9 Krunchies - Chris's Micro-enterprise
BetterNZ, September 2013
Short video about Chris's micro-business ...

Everafter Theatre Company - dance workshop
A very short video clip from a dance workshop with choreographer and teacher, Dean Watson - be sure to watch it all the way through, especially the last 20 seconds.
(Thanks to Accessible Arts on Facebook for the link).

Actors with learning disabilities chosen to work with Royal Shakespeare Company
Lisa Glover, Learning Disability Today - News, 18th March 2014
A theatre company of actors with learning disabilities has been chosen by the Royal Shakespeare Company (RSC) to be part of its Open Stages project, in what has been described as "a triumph for inclusion" ...