Address details

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

Tuesday, 31 March 2015

One day discount offer on Proloquo2Go

If you are considering purchasing the Proloquo2Go app, you might want to check out AssistiveWare's offer of a  50% discount on Autism Acceptance Day, 2nd April. 

Check with AssistiveWare about the best time to order taking international time zones into account.

Research news and commentary #2 for 2015

Cardiometabolic Health For People With Intellectual Disability
Source: NSW CID E-News, March 2015
The Department of Developmental Disability Neuropsychiatry (3DN) at the University of New South Wales will be undertaking research into cardiometabolic health and people with intellectual disability.

NIH Updates Down Syndrome Research Plan: New Directions for Research to Improve the Health of Those with Down Syndrome
(US) National Institutes for Health, 8th December 2014
The NIH recently released Down Syndrome Directions: The National Institutes of Health Research Plan on Down Syndrome (PDF - 772 KB), an updated strategy to advance research related to Down syndrome ...

LuMind Foundation and Research Down Syndrome Merge to Create Leading Source of Private Funding for Down Syndrome Cognition Research
LuMind Foundation, 2nd March 2015
LuMind Foundation and Research Down Syndrome have combined resources and programs. Together, these organizations contributed nearly $12 million to stimulate Down syndrome cognition research, resulting in the discovery of multiple drug targets and supporting the initiation of four clinical trials ...

People With Down Syndrome May Actually Age Faster
Shaun Heasley, Disability Scoop, 26th February 2015
The inner workings of people with Down syndrome age much faster than typically-developing individuals, a new study suggests.

Various parts of the body age at an accelerated pace in those with Down syndrome, researchers say, possibly explaining the heightened risk for various medical issues among this population ...
University of Kansas News, 10th February 2015
The time has finally come to end the separation of special education and general education students, researchers at the University of Kansas argue in a new publication. Not only does research show that all students have higher achievement in fully integrated environments, but support and public policy for schools to make such a switch are coming into place as well ...

Influence of the Environment on Participation in Social Roles for Young Adults with Down Syndrome
Kitty-Rose Foley, Sonya Girdler, Jenny Bourke, Peter Jacoby, Gwynnyth Llewellyn, Stewart Einfeld, Bruce Tonge, Trevor R. Parmenter, Helen Leonard
PLOS One, 26th September 2014
... The purpose of this study is to describe the social participation of young adults with Down syndrome and examine its relationship with the physical and social environment ...
The full text of this Western Australian study is freely available online

Monday, 30 March 2015

Kosciuszko to Coogee (K2C): the home stretch

You can join in two events that will mark the final stages of Lance Mitchell's Kosciuszko to Coogee fund-raising ride for Down Syndrome NSW this week:

K2C - Kiama Dinner

Thursday  2nd April at 6:00pm

Down Syndrome NSW invites you to our community dinner at Blue Diamond restaurant at the Sebel Harbourside. The guest of honour is Lance Mitchell, who is riding from Kosciusko to Coogee to raise money and awareness for Down Syndrome NSW.

Down Syndrome NSW Executive Director Tracylee Arestides, Information, Training & Support Manager Judy Davidson and Community Engagement Manager Benjamin Chinnock will also be in attendance.

The Sebel Habourside - 31 Shoalhaven Street, Kiama NSW 2533There is a $10 pizza special on Thursday night or other dishes also available for purchase.

Lance is set to arrive in Coogee at around midday on Sunday 5th April,

We are organising a gathering to congratulate him. We will be meeting at 11am on Coogee beach. Look out for the Down Syndrome NSW flags. The Arden Lounge at the Coogee Bay Hotel is reserved from midday in case of bad weather.
Kosciuszko to Coogee, is an inspired fundraising idea to help raise money for the work of Down Syndrome NSW. Created by Lance Mitchell it starts on 21st March 2015 and involves 16 days of cycling from Mt Kosciuszko all the way to Coogee finishing on the 5th April.

Lance’s childhood friend since before Kindy, Cameron Carmody’s daughter Alicia is the source of inspiration for Lance’s ride. “I want to make a difference, I’m inspired by the work of Down Syndrome NSW and wanted to support them by creating Kosciuszko to Coogee.”

Alicia was born with Transient Leukaemia and Down syndrome. Lance reflects “”As one could imagine we extended our unconditional love and support, and did what we could to help. The first and most obvious step was to help Alicia through the chemotherapy and to stabilise her health as best as possible. This was a rough time for everyone, but particularly so for Cameron and Rebecca and their families, but little Alicia showed the gumption of a weathered soldier and pulled through the storm.”

Whilst clearly not a matter of life and death, the sudden and quite unexpected Down syndrome diagnosis nevertheless concerned Cameron and Rebecca greatly as they knew little about it. Lance recounts “They now found themselves riding a particularly daunting roller coaster, feeling quite alone. In the darkness of their isolation a lighthouse beam cut out from the horizon: Down Syndrome NSW.”

News and commentary on the NDIS (30)

The Commonwealth Department of Social Services and State and Territory Government Officials invite you to participate in our public consultation for a national framework on quality and safeguarding for the National Disability Insurance Scheme (NDIS).

The consultation paper was released by the Disability Reform Council on 16 February 2015. A copy of the paper including an easy English version, fact-sheets and framework summary are located on
The consultation will provide an overview of the quality and safeguarding framework, and you will have the opportunity to ask questions and provide feedback.

Details of the NSW consultation are as follows (other dates and locations nationally are here):
Sydney Monday, 13 April 2015
Newcastle Tuesday, 14 April 2015 
To assist us with venue and meeting management, we request that you register here.
If you require an Auslan interpreter or a hearing loop, please register and let us know which of these supports you require no later than 5 business days before the event. This will allow us to make the necessary arrangements to have these supports available.

Your participation will be valuable to us. We hope that you will join us as we would like to hear your thoughts on quality and safeguarding for the NDIS and how this may affect you.

If you cannot attend a public consultation, you may wish to make a submission or join the discussion online. The closing date for submissions and other contributions is 30 April 2015.

Clare Colley, Canberra Times, 27th March 2015
Bureaucratic "gobbledygook", a lack of respite and transport funding, and inexperienced planners are just some of the problems creating anxiety around the National Disability Insurance Scheme, participants have told a public hearing into the ACT roll-out.

While some had positive comments about the life-changing scheme, the bulk of the evidence before the joint parliamentary committee was negative with complaints of lengthy waits for assessment by planners with little knowledge of complex disabilities ...

Clare Colley, Sydney Morning Herald, 24th March 2015
People with a disability would be at risk of poor quality support and struggle to find a place with providers if service prices remain too low, a disability peak body warns.

Pricing has been just one of the problems identified in the rollout of the National Disability Insurance Scheme (NDIS) in the ACT, National Disability Services chief executive Ken Baker said ...

El Gibbs, Sydney Morning Herald, 23rd March 2015
... There are about 400,000 people with a disability in NSW, with up to 240,000 having a high degree of disability, according to the Australian Bureau of Statistics. With 140,000 people expected to be eligible for the NDIS, what will happen to the other 260,000 people? Where will they get support? ...
Jim Simpson, Every Australian Counts, 12th March 2015
A central aim of the NDIS is to provide equity of access to disability support. The terrible inequities of the past where access to disability support was based on rationing and queues should be banished. However, does the scheme as so far designed ensure equity of access for all people with disability or only for those people who have the awareness and understanding to seek out the NDIS or have family advocates to support them with this? Many people with disability are not in this position ...

NSW CID Member Speaks Out About Privatisation of NSW Government Disability Services
NSW Council for Intellectual Disability (blog), 23rd March 2015
This month, NSW CID Member Barbara Spode speaks out about the privatisation of NSW Government Disability Services and what she feels will be the result for her daughter India.

NSW CID most certainly agrees that the specialist services and professional skills which are particularly important for people with complex behavioural and health needs, must not be lost with the transfer of services to the non-government sector ...

Q2 Report
The NDIA reports every quarter on its operations. The Q2 Y2 report, published on 20 February, covers the period up to 31 December 2014.
To read the reports click here

NSW confirms bi-partisan approach to NDIS
Every Australian Counts, 25th February 2015
Bipartisan political support for the continuing roll out of the NDIS was strongly in evidence at the recent NSW conference of non-government support providers, National Disability Services ...

Fears young people in nursing homes will miss out on NDIS
Linda Belardi, Australian Ageing Agenda, 18th February 2015
Most of Australia’s 6,000 young people living in residential aged care will miss out on the National Disability Insurance Scheme as many lack the skills, advocacy and support networks to access the scheme, a senate inquiry has been told ...

NDIS transitions behind schedule NDIA quarterly report reveals
Clare Colley, Canberra Times, 20th February 2015
The number of Canberrans eligible for the National Disability Insurance Scheme has been dramatically underestimated, the latest progress report shows ...

National Disability Insurance Scheme: citizens' jury decides whether the billions are being well spent
Rachel Browne, Sydney Morning Herald, 20th February 2015
Participants in trials for the National Disability Insurance Scheme have told of both frustration and fulfillment with the multi-billion dollar program which is being rolled out to 400,000 Australians.

Sixteen randomly-selected trial participants have given their evidence to a citizens' jury of 12 people in a three-day hearing in Sydney organised by People with Disability Australia ...

Housing: the big sleeper
Every Australian Counts, 19th February 2015
Anyone with a disability will tell you that finding affordable, accessible housing is next to impossible. There are huge wait lists, too many young people in nursing homes and growing numbers of older parents despairing what will happen to their children when they can’t care for them anymore ...

Friday, 27 March 2015

Weekend reading and viewing: 28th - 29th March 2015

My Opportunities, My Choices’ – Enjoying Full and Equal Rights and the Role of Families
World Down Syndrome Day Conference, United Nations, New York,  20 March 2015

When Mama Needs Help
Ellen Stumbo, Hope and Encouragement, 13th March 2015
... a post about parenting in the trenches, whatever that means to you, because mainly this post is about you, the parent, and how you are dealing with the extra needs in your family ... I want to talk to you, my fellow parent who feels wrecked, it is okay to ask for help ...

Dual Diagnosis (ASC/DS), 16th March 2015
... With our limited knowledge of ASC we’d always ultimately dismissed the possibility that it might be something Ava had, as we believed that people with Autism couldn’t read other people’s emotions, and Ava we’d decided, was very intuitive about how we were feeling ...

5 Reasons Why Music Helps Children with Special Needs
Ryan Judd, Friendship Circle, 13th January 2014
We all know how powerful music can be in our own lives and in the lives of our children, but why is music so compelling and captivating? What exactly is it about music that makes it a great way to connect with and help children with special needs? Let’s take a look ...

Taking The Social Model of Disability Online
El Gibbs, Model View Culture, 17th March 2015
... Today, the same excuses for the offline world are being used for not making the online one accessible: we are mired in arguments about cost, while others say that by making accessibility part of development and testing structures, change is inevitable. I am more sceptical. Despite years of court cases, both in Australia and in the US, major corporations are reluctant to invest the resources to ensure everyone can use their websites and online tools ...

Speaker who uses wheelchair 'carried onto stage' at Melbourne disability summit
ABC News Online, 26th March 2015
Organisers of a national disability conference in Melbourne have come under fire after a speaker had to be carried onto the stage because it was not wheelchair accessible.

Attendees of the sixth annual National Disability Summit, organised by a private provider, said participants with disabilities who paid $2,000 to attend were made to sit together at one table at the back of the room ...

My Fashion Police Officer
Kari Wagner-Peck, Huffington Post, 23rd March 2015
... I came in the kitchen with a head wrap on which I thought very chic and practical, because it was humid and I have wavy hair. He looked up from his cereal grimacing: "What's that?"

"You don't like it?"  "No, no. Off now."

"Now listen, I like it..."  He covered his eyes: "Very bad. NO!" ...

Down Syndrome NSW Family Fun Day
 to celebrate
World Down Syndrome Day 2015
21st March 2015

On employment ...

Business Benefits of Hiring People with a Disability
Around one in every five people in the Australian community has some form of disability (18.5% ABS 2009). It is from this community that organisations draw their existing and potential employees, clients, shareholders, business partners and service providers. Our community is also ageing; it is estimated that four in 10 workers will be aged 45 or over by 2020. As disability increases with age, this has significant workplace implications.

In Australia’s competitive marketplace, both domestically and globally, and while facing skills shortages, we simply can’t afford to ignore this huge market segment of the community, as employers and as service providers.

The most significant barrier for people with disability, however, still appears to be the stereotypical assumptions and attitudes of employers about what people with disability can and cannot do ...

Starbucks' 'Includion Academy'
Starbucks Newsroom, 28th January 2015
... Starbucks is launching an on-the-job training program for people with cognitive and physical disabilities at its Carson Valley Roasting Plant and Distribution Center.

The plant in Minden, Nevada employs 210 people who distribute products to Starbucks® stores worldwide. Several of the partners (employees) have completed the Starbucks Inclusion Academy program which helps them gain skills and work experience in manufacturing and distribution.

The Inclusion Academy is the result of a year-long collaboration between Starbucks and the Nevada Department of Employment, Training and Rehabilitation (DETR). Starbucks provides training space at the Carson Valley plant and instructors for on-the-job and soft-skills practice ...

News Update – Business Services Wage Assessment Tool
Inclusion Australia, 3 March 2015
... Justice Buchanan commented extensively about the discriminatory nature of BSWAT, including saying that ‘Intellectually disabled people are placed, at the outset, at a disadvantage which prevents effective compliance.’ He also commented that ‘The basic defect in the use of BSWAT is that it reduces wages to which intellectually disabled workers would otherwise be entitled by reference to considerations which do not bear upon the work that they actually do.’ ...

BSWAT update - Wage Supplementation
disability e-news (newsletter from the Australian Department of Social Services)
Issue 219, 24th March 2015
The information contained in this newsletter is aimed at disability service providers (but anyone can subscribe).

Lenore Taylor, The Guardian, 26th March 2015
The Abbott government is likely to have to ask the Human Rights Commission for extra time to come up with a new system to determine fair wages for thousands of intellectually disabled workers, three years after the old system was declared discriminatory ...

Aspiring chef with Down's syndrome lands dream job in a cafe after Twitter campaign and the first thing he asked his new boss was 'when's the next staff party?'
Daily Mail Australia, 26th March 2015
A Twitter hashtag set up to help a man with Down's syndrome find work has landed him his first job.

Ben Small, 26, was offered a job at the Wilson's Kitchen café in Liverpool after owners Lloyd and Kellie Wilson responded to the appeal - and he started his first shift there yesterday ...

Thursday, 26 March 2015


Colouring Books
People often ask about colouring books that are designed for grownups.  I Love Mel's pop culture colouring books are hand illustrated by Mel Simone Elliott and include titles such as Colour Me Good Harry Styles, Colour me Good Fashion, Colour Me Good Benedict Cumberbach and more. Try your local bookseller for availability of these UK titles.

I Love Mel website - the books are listed here, but check shipping - it can be expensive to ship books from the UK to Australia. Look under the 'free stuff' tab for pop-culture colouring pages to download.

My Choice Matters - Living Life My Way 
NSW Council on Intellectual Disability E-News, March 2015
My Choice Matters has developed a suite of 60 resources, all in Plain English and Easy Read to help get you thinking about a good life. 

Three workbooks have already been released and can be found here and starting from this week they will make an entire topic available via their blog and website. 

Topics include Choice, Goals, Choosing a Service Provider, Managing a Personal Budget and more!
The resources will also be available in an e-learning format which will be announced in the coming weeks so if you prefer your learning online and interactive, stay tuned for details of that. 
With the NDIS on its way we’ve all got to start thinking about the possibilities so start learning today!

People with Down syndrome in current films

Heartbreak and Beauty
Bus Stop Films, 2015
A short trailer of Bus Stop's latest release

Where Hope Grows
Godspeed Pictures, 2014
This feature length movie, starring David De Sanctis, is due for release in cinemas in the US on 15th May 2015. A new trailer was released on 19th March:

The power of a universal story - the impact of The Interviewer
Genevieve Clay-Smith, Bus Stop Films, 24th March 2015
... Created with 12 people with an intellectual disability, through weekly filmmaking workshops at Bus Stop Films, I have often been asked, how has, essentially a community film been able to win over thirty international film festival awards, gain distribution across 5 territories, screen at the United Nations and go viral in Europe? ...

Wednesday, 25 March 2015

Education support funding: I give a Gonski campaign

A current campaign is focussing on funding for the support of children with disability in Australian schools, in light of the Government's response to the  2011 Gonski Review. The Australian Education Union is at odds with the Government on how funding is being applied, and how much is available:

Petition for Gonski funding to include children with disability
NSW Council on Intellectual Disability E-News, March 2015
There is no Gonski funding for over 100,000 children with disability – one third of the total number in our schools. 
Every year that this continues is another year these children are denied the chance to reach their potential. 
Please add your name to this petition calling on the Abbott Government to honour its commitment and properly fund the education of all students with disability. Click here to find out more and sign the petition.

Students with disabilities lobby Government ahead of May Budget
Radio National Breakfast, 24th March 2015 (audio file)
More than 100,000 students with disabilities across Australia are being denied access to education because of a lack of government funding. On top of that, many other students are receiving inadequate support.

At the last election, the Abbott Government promised to redress the problem - but students and their families are still waiting. Today they're holding a national day of action at Parliament House to lobby the Government ahead of the May Budget.
New AEU report shows most principals can’t meet needs of students with a disability, 24th March 2015
Four out of five principals currently lack the necessary resources to meet the needs of their students with a disability.

Damning new statistics from a landmark 2015 State of our Schools report reveals Australia’s most vulnerable kids are missing out on much needed support in the classroom ...

Australian Education Union media releases, 24th March 2015:

Pyne needs to face the facts on his broken promise on disability schools funding
Education Minister Christopher Pyne needs to face up to his Government's broken promise on disability funding, and take the lead in addressing the huge levels of unmet need in the education system, the AEU said today ...
Abbott must keep his promise to fund disability in schools 
New research by the AEU has found that eight-out-of-ten principals do not have the resources they need to educate growing numbers of students with disability, and that their learning is suffering as a result ...
Labor and the AEU's Shameful Scare Campaign, Minister for Education and Training (media release), 24th March 2015

Government can't turn its back on students with disability, Shadow Minister for Education (media release), 24th March 2015

Tuesday, 24 March 2015

Post World Down Syndrome Day wrap

Thank you to everyone who acknowledged and celebrated World Down Syndrome Day at the

Because of international time differences, a lot of World Down Syndrome Day information and media reached us after our 21st March, and is still being published.  Social media has proved an excellent platform for events such as World Down Syndrome Day, so keep looking on Facebook, Instagram, blogs, Twitter and websites for the many personal and organisation's stories and images. Here are some links that have caught our eye since the weekend:

On Saturday 21st March 2015, The Empire State Building in New York was lit up in blue and yellow, in honour of World Down Syndrome Day - this is the Empire State Building's own beautiful photo of the event.

Dave Hingsburger wrote two blog posts about World Down Syndrome Day, both of them getting right to the point:

World Down Syndrome Day
Dave Hingsburger, Rolling Around in My Head, 21st March 2015
Right now, somewhere in the world, someone with Down Syndrome is sleeping in.

Right now, somewhere in the world, someone with Down Syndrome is getting up and getting ready for work.

Right now, somewhere in the world, someone with Down Syndrome is kissing his wife goodbye as he heads out the door ...

World Down Syndrome Day: In A Different Key
Dave Hingsburger, Rolling Around in My Head, 22nd March 2015
... Lyddia has all the skills necessary to just be Lyddia. She lives her life well. She lives her life kindly. She brings herself to every encounter. She brings her presence into every room. How do you rank those things?

... Everyone needs a seat at the table ... 

... All means All ...

21 Beautiful Faces of Down Syndrome From Around the World
Amy Julia Becker,, 20th March 2015
An international photo gallery.

No Single Story
So Here's Us, 21st March 2015
There is no single story which speaks the truth of Down Syndrome ... There is no truth behind the many, many comments of “I don’t know how you do it” and it’s close cousin “I could never.” Because trust me, you could and you would. That’s what parenting is, Down Syndrome or not: doing what you have to, the best you can on most days, and not so great on others ...

Australian Parliament celebrates World Down Syndrome Day one day and Government denies child with Down syndrome a visa the next ...

Statement from Down Syndrome Australia, 23rd March 2015:

On Thursday 19th March parliamentarians from all sides came together in our national parliament to celebrate World Down Syndrome Day. In a parliamentary first, the Senate passed a motion congratulating members of the Australian Down syndrome community.

It was therefore particularly disappointing that on the weekend when our community was celebrating the lives and achievements of people with Down syndrome that we learnt that the Immigration Department has denied a visa to Eliza Foneska.

“Many members of the Down syndrome and wider Australian community have let Down Syndrome Australia know how terribly disappointed they are at this latest decision.”

“At a time when we should be coming together to celebrate our shared achievements and inclusion, to have a decision like this made by the Immigration Department is terribly disappointing.”
“Australia rightly prides itself on being a free and open country, so to have a decision taken by a Government Department that essentially says the two parents are welcome to come to Australia but they must leave their young daughter behind sends a very cruel message to the rest of the world.”

Down Syndrome Australia will continue to push for changes to the Migration Act, so that it is no longer exempt from the Disability Discrimination Act. To exempt the decisions of the Immigration Department from the Disability Discrimination Act adds to the “low expectation environment” that people with disabilities live with within the Australian legal and legislative system.

“In addition to supporting and advocating for the Foneska family in whatever way we can, Down Syndrome Australia will continue to work towards removing this discrimination against people with Down syndrome.”

Further information/comment:
Ruth Webber
CEO Down Syndrome Australia
Ph: 0409 115 859

Monday, 23 March 2015

Early NDIS rollout promised by NSW LNP

Baird pledge: National disability scheme to start a year early
Kirsty Needham, Sydney Morning Herald, 22nd March 2015
The Baird government will begin the National Disability Insurance Scheme a year ahead of schedule, starting in Penrith and the Blue Mountains in July, Premier Mike Baird will announce on Sunday.

Children aged under 18 in the Penrith and Blue Mountains area will be included in the scheme this year, after the Abbott government agreed to bring forward funding ...

NDIS game changer
Every Australian Counts, 23rd March 2015
On the weekend the NSW Premier Mike Baird promised to roll out early intervention services under the NDIS for up to 2,000 young people with disability in Penrith and the Blue Mountains from September this year if he is re-elected.

That’s more than nine months ahead of schedule.

Every Australian Counts campaign director John Della Bosca called it “a game changer for the disability community” ... “As this news sinks in people with disability and their families across Australia will be asking if Mike Baird can speed up the delivery of the NDIS why can’t my Premier?”


Kosciuszko to Coogee for Down Syndrome NSW

As planned, Lance Mitchell set off on his fund-raising ride from Kosciuszko to Coogee (K2C), on World Down Syndrome Day, Saturday 21st March. He plans to reach Coogee on 5th April. Visit the K2C Everyday Hero page to support Lance's ride and Down Syndrome NSW. 

Yesterday evening, Lance wrote on Facebook ...
Day 2 done! 100k's down. Today was a slow day with really steep hills to climb out of Jindabyne but level for the next few days until we get to Nimmitabel.
And this morning ...
Just getting on the bike for Day 3. Cooma here we come!
Visit the K2C Facebook page for Lance's videos of his ride through some tough climbs early on, photos along the way, and the logo (at right) that you are invited to use for your profile image throughout the event to help promote it.

Saturday, 21 March 2015

Weekend reading and viewing: World Down Syndrome Day edition

My Opportunities, My Choices
Interviews with people with Down syndrome from 39 countries looking at their enjoyment of full and equal rights and the role of their families. This global video event is presented for World Down Syndrome Day, Saturday 21 March 2015 by Down Syndrome International.

"‘My Opportunities, My Choices’ – Enjoying Full and Equal Rights and the Role of Families"United Nations Headquarters, New York, USA

Friday 20 March 2015 (this event has occurred overnight, Australian time).

Australian speakers were:

Dr Rhonda Faragher and Ruth Faragher (self-advocate) - Australia Senior Lecturer, Australian Catholic University, Australia, "Inclusive Education for Learners with Down Syndrome: The Family's Role in Getting it Right."

Professor Monica Cuskelly – Australia Associate Professor, School of Education, The University of Queensland, “Constructing Futures: The Roles of Family”
UN Secretary-General's Message for 2015This year’s World Down Syndrome Day falls as the international community is striving to create a universal, transformative agenda for sustainable development. The links between disability, human rights and development span a wide spectrum of development issues relating to economic, social and environmental factors ...
A excellent question, with a great answer, for World Down Syndrome Day:

‘Daddy, What’s Down Syndrome?’ Explaining My Son’s Diagnosis to His Sister
David Perry, Yahoo  - Parenting, 17th March 2015
... she asked why he was doing different things, rather than why he was different than other children. The latter didn’t occur to her — he was, after all, her big brother ...
#education21 - how educational research is helping children with Down syndrome today
The complete series of 21 posts, from Down Syndrome Education International.

21 Reasons ...
Krista Rowland Collins, A Perfect Extra Chromosome, 21st March 2015
On March 21st, we will celebrate differences, we will celebrate being unique, we will celebrate all abilities and our wonderfully made children.

21 reasons why I love my daughter and how she has made our world a more beautiful place ...

Search social media via #wdsd2015 for many other celebrations around the world.

Thursday, 19 March 2015

Conference for people with intellectual disability

NSW Council for Intellectual Disability:

Awareness video from Karachi

Pakistan would be far from the easiest place in the world to raise and support a child with Down syndrome. To celebrate World Down Syndrome Day 2015, the Karachi Down Syndrome Program has launched its video aimed at raising awareness about Down syndrome and shattering negative stereotypes.

Wednesday, 18 March 2015

DSi World Down Syndrome Day Awards 2015

Down Syndrome International announces recipients of World Down Syndrome Day Awards
DSi, 13th March 2015
Ahead of World Down Syndrome Day on Saturday 21 March, Down Syndrome International (DSi) is delighted to announce the recipients of the 2015 World Down Syndrome Day Awards. 
2015 is the sixth year of the World Down Syndrome Day Awards, presented to individuals or organisations whose voluntary, professional or scientific activities have strengthened and enriched the lives of people with Down syndrome, or contributed to scientific advancement related to Down syndrome.
Voluntary and Professional Awards
5 individuals with Down syndrome receive an award for outstanding self-advocacy:
Ashley DeRamus (USA) – Ashley DeRamus is an entrepreneur, an advocate, a singer, a public speaker, a music video star and a fashion designer. Ashley and her mother, Connie, founded The Ashley DeRamus Foundation, an organisation founded for and dedicated to the education, advancement and quality of lifestyle for those with Down syndrome.

Ioana-Rauca Avram, Mihai Arsenie and Valentin-Bogdan Cristea (Romania) – These three young adults are reporters at TVR Television where they are part of “FĂRĂ PREJUDECĂŢI” (“UNPREJUDICED”). This is shown on national television. They report on different foundations that help people with disabilities. Their experience as reporters has been shared with other people who have Down syndrome, and a significant change has been noted concerning their communication with their families and society in general.

S. Karaan (India) – S Karaan attended main stream school until twelfth grade. He excels at chess on school, District State and National Levels, which has proved to significantly improve his concentration and memory skills. He competes with people his same age who do not have Down syndrome. He has been selected for Special Olympics and is also a board member of Special Olympics Bharat Tamilnadu, where he was also selected to attend a Leadership Training Programme in Governance. He has also received many awards including Young Achiever Award by Rotary Club, Chennai, Rising Star Award for Basketball to name a few.

6 individuals receive an award for outstanding voluntary and professional activities:
Andrea Seewald (Austria) and Matias Haber (Uruguay) –These two individuals teach Tango dance to people with Down syndrome in Austria and Uruguay. Twice a year they arrange a professional and high level Tango Inclusion Festival – Embracing Tango. All of their work is done by sourcing their own funders. Their main aim is to embrace inclusion of people with Down syndrome in the dancing communities. As a result young adults with Down syndrome are more confident and their socialising skills improve.

Amarjit Singh Anand (India) – Amarjit is a father of a child with Down syndrome. Eighteen years ago he founded the first Parent’s Association in his State. Over the years this has grown to 10 Parent Associations in his State. He then went on to establish the Down Syndrome Association Punjab the first of its kind in North India. He was also part of The Draft Committee who assisted with UNCPRD.

Cate Sayers (Australia) – In 2009 after Cate was unable to find appropriate dance classes to meet the learning needs of her daughter who has Down syndrome, she founded e.motion21 and is currently CEO. e.motion21 is a non-profit organisation that provides an Australian first, innovative dance and fitness programmes for children and young adults with Down syndrome. Over the last five years under Cate’s leadership e.motion21 has grown to 7 sites across Victoria with plans for growth both within Victoria and across Australia.

Rosemary Nambooze (Uganda) – Is the mother of child with Down syndrome. Both Rose and her husband opened a Centre to raise awareness about Down syndrome in Uganda and to strengthen the capacity of parents to cope with raising children with special needs. Rose works very hard with her community in sensitizing them to children and their special needs. Rose has sourced all the funding to keep it operational.

Penny Green (United Kingdom) – Director of Down’s Heart Group, Penny has played a pivotal role in the development of resources and materials for people with Down syndrome who have a heart defect. Penny has also done a huge amount of work for Down Syndrome Foundation Nigeria and is involved in setting up a charity in the UK to support the work in Nigeria. Penny is also an avid supporter of Down Syndrome International and regularly raises funds to help this cause. Penny is also well known throughout the Down syndrome Facebook community, managing the World Down Syndrome Day Facebook group, which has 20,000 members. In 2012, Penny was a torchbearer for the Olympic Games, carrying a torch for Down syndrome.

All recipients are invited to a formal presentation of World Down Syndrome Day Awards for the years 2013-2015 taking place at the 12th World Down Syndrome Congress (WDSC) in Chennai, India in August 2015.

Tuesday, 17 March 2015

'The Special Proposal' - World Down Syndrome Day 2015 campaign

Down Syndrome Australia is proud to announce the release of a wonderful new video produced for World Down Syndrome Day 2015.

The Special Proposal was produced by Italy's CoorDown (famous for last year's wonderful Dear Future Mom), and this time, Down Syndrome Australia along with other leading international Down syndrome organisations were invited to contribute to the production of this wonderful video celebrating World Down Syndrome Day 2015. 

Use #specialproposal on social media to spread the word and see what others are saying!

We have embedded the video below, but you can also view it on its own website at, or on CoorDown's YouTube Channel at
It conveys a very important message to the community about the rights of people with Down syndrome to pursue relationships and independence and the universal need for love, connection and companionship.
It's World Down Syndrome Day #‎WDSD15‬ in a few days on 21st March, and we'd love you to celebrate with us.

Visit Down Syndrome Australia's website here to see some exclusive behind-the-scenes photos from The Special Proposal.  Want to give your support by donating or in some other way? There is a donate button at the end of the video that also connects you with the associations that collaborated on the video (scroll down and click on the logos). 


Monday, 16 March 2015

Funding extension for services transitioning to NDIS

$13.3M of a total $47.1M funding extension has been allocated to NSW services:

Funding extensions for disability and carer programmes
Media release, Senator The Hon Mitch Fifield, Assistant Minister for Social Services, 13th March 2015
The Abbott Government today delivered certainty to thousands of people with disability, carers, families and their advocates by extending funding for a range of programmes transitioning to the National DisabilityInsurance Scheme (NDIS). 
The Assistant Minister for Social Services, Senator Mitch Fifield, said the Government’s priority was to ensure continuity of services to families and carers as the transition to the NDIS begins. 
“Families, carers and children will continue receiving quality care and services as there will be no interruption as programmes migrate to the NDIS,” Minister Fifield said ... read on here, for the full text of the media release, giving details of the programs funded, and the breakdown by States and Territories.

Scrapheap Adventure Ride 2015 !

The 2015 destination for the legendary Scrapheap Adventure Ride has just been announced:
The Scrapheap Adventure Ride is a unique fundraising event which involves motorcycle enthusiasts from all over the country purchasing a bike for no more than $1000 and doing it up for an adventure ride through the Aussie outback, all while raising money for people with Down syndrome. 
In just five years the event has raised over $290,000 for Down Syndrome NSW.
Riders begin their journey at home or wherever they like but arrive at the same destination. 
This year that destination is Urana in southern NSW, where all ‘Scrappers’ plus family and friends will meet for a weekend of fun and entertainment at a campsite.
25th - 27th SEPTEMBER 2015 
 Our target for 2015 is 100 riders raising $100,000 for Down Syndrome NSW. So what are you waiting for? Click here to join the 2015 Scrapheap Adventure Ride
If you’re not a rider, you can support the Scrapheap Adventure Ride and Down Syndrome NSW by sponsoring a rider or just donating to the cause.

Where is Urana? 
The Urana Shire is centrally located right in the heart of the beautiful Riverina and is some 3,361 sq. kms in area. Supporting a population of 1500 people, the Shire consists of five townships each of which boast obvious rural charm. 
Urana Shire is well positioned about 110 kms from both the major NSW regional centres of Albury and Wagga Wagga and maintains a network of over 1,000 kms of roads within the Shire ... Urana Shire website

Friday, 13 March 2015

Weekend reading and viewing: 14th - 15th March 2015

Proudly, Outloudly
Dave Hingsburger, Rolling Around in My Head, 9th March 2015
... Like it or not your child has been born into a life of advocacy. By the sheer nature of their disability and their difference and by the circumstance of the timing of their arrival - they will live a life of cutting new paths, challenging preconceptions and prejudices and opening the way for others who follow ...
Embracing Wade, 11th March 2015
Rightly or wrongly I have decided that I want Wade to try mainstream activities first before we try disability specific ones. This is not a judgement on other parents choices, different kids need different things, it’s just the Plan A I have for Wade and then I’m prepared to go to Plan B if needed. But it’s hard to reconcile the high expectations I hold for him with the question that constantly rears it’s head in the back of my mind.

Are you doing this for him or for you?

Daily Life, 12th March 2015
... Desiree Andrews is a cheerleader with the Lady Knights Squad at Lincoln Middle School in Kenosha, Wisconsin, who has Down syndrome. During a recent home basketball game, she was getting bullied by some people in the bleachers.

The dudes on the court, noticing the fracas, did something awesome: they called a timeout, walked off the court, and told the bully "Don't mess with her" ...

Kimchi Latkes, 5th March 2015
... I want to suggest here, to the person who uses that word (retard) and any derivations of it, that it is personal, you do mean it like that, you are talking about my kid, it isn’t about being politically correct, and asking for respect is not an act of policing the English language.

What are we talking about, then? Here is where I think we get tripped up. I think we are getting fixated on a single poisoned branch of a tree, not realizing that cutting off that one branch will not work in the long run. I think we need to step back and look at what poison feeds that tree, really dig deep into what this word means ...

Frances Ryan, New Statesman, 9th March 2015
... The internet age characterises the tone of tragedy ...Fallible women and pitiable disability. The comment function below allows instant, public commentary ...

T4321 - World Down Syndrome Day 2015

This year marks 35 years since a group of parents, and others with a passion for the rights of people with Down syndrome, got together and held the meeting that first established the Down Syndrome Association of NSW.

We think that’s something to celebrate join us at one or more of these events on World Down Syndrome Day, Saturday 21st March 2015.

Bookings/registration are essential for each event - details and links here:
  • High Tea at The Langham Sydney 

  • Family Fun Day at Lollipops Playland Parramatta 
  • Hunter Region T4321 Disco, Club Macquarie, Argenton 

For people living outside Sydney and the Hunter we would love it if you would consider hosting your own event as many of you have in previous years. To register your event click here or for more information contact Sarah or Ben on 9841 4444

Thursday, 12 March 2015


This week, it's all about communication ...

Supporting the development of clearer speech for children with Down syndrome
Slides, video and resource links from the Down Syndrome Education International webinar held on 10th March 2015, are now available online here.

Do I Buy the (Fill in the Blank) Program? Evaluating at Home Speech Programs/Products
Jennifer Bekins, Talk - Down Syndrome, 9th March 2015
... How are families supposed to weed through what works and doesn’t work? The very first thing to do is take time to look over the program with a critical eye. This isn’t personal, it’s fair. Do not get pressured by companies, therapists, or other parents to buy a product. Ask questions ...

Auslan Tutor App now available for Android
From Royal Institute for Deaf and Blind Children on Facebook
Learning to sign has never been easier with RIDBC’s Auslan Tutor, available now for download on the App Store and Google Play.
Learn Australian Sign Language (Auslan) from the comfort of your own home or on the go with this portable multimedia tutorial designed for use on mobile devices.

Find out more here and help us share the great news!

Thanks to Key Word Sign NSW on Facebook for the link (via Aileen Ryan)

Wednesday, 11 March 2015

People with Down syndrome online and in other media

Down syndrome author Grace Chen writes book with help from friend
CBC News, 8th March 2015
... Grace Chen's dream is now a reality thanks to local author Judy McFarlane. It's a collaboration that is benefiting them both ...

Elkins Man with Down Syndrome Volunteers at Fire Department
NWA Homepage, 9th March 2015
Justin Tate, or JT has grown up at the Elkins fire department where his dad is assistant chief and he's always wanted to follow in his father's footsteps ...

VATTA (Voices at the Table), 2nd March 2015
Packing up boxes for the move from my house to my new condo reminds me of my BIG MOVE 12 years ago. I was 18 years old and I had just graduated from high school. I was so excited to be moving away from my childhood home in the small town of Milk River to the big city of Lethbridge!
VATTA (Voices at the Table), 9th March 2015
Today I want to give you some tips for moving. I moved out of my house into a whole new chapter of my life! I just love it! But, moving is a lot of work!

Getting Active (video series)
Down's Syndrome Association
This year (UK) Awareness Week (16 -22 March) is all about Getting Active and Getting Involved. We want to encourage people with Down’s syndrome to Get Active and Get Involved in their local communities. Having different hobbies and leisure pursuits benefits health and overall wellbeing. It can also be a lot of fun and is a great way to make new friends.

There are so many ways to Get Active: through sport, creative or dramatic art, learning, or socialising. Here are some people to tell you all about the different things they like to do ...

Tuesday, 10 March 2015

Dance development opportunity for adults with disability

This new project at Carriageworks, announced yesterday, could be a fantastic opportunity for already skilled dancers with Down syndrome who aspire to develop their theatre skills and perform at this prestigious venue:
Announcing a major commission by Carriageworks in partnership with Dance Integrated Australia and Force Majeure – A New Project. 
Dance Integrated Australia’s Philip Channells will collaborate with Force Majeure’s new Artistic Director Danielle Micich and a company of artists with disability who will develop the work over a two year period. The work will culminate in a world premiere season at Carriageworks in October 2016.

Call Out for Performers
Dance Integrated Australia and Force Majeure invite artists with physical, sensory, psychosocial, neurological, medical or intellectual impairment to participate in a weekend workshop audition. 
Applicants must be based in NSW and be 18+ years.
When 9-10 May 2015, 10am-4pm.You will be required to attend one of these days. 
Where Carriageworks, 245 Wilson St, Eveleigh Sydney NSW 2015 T: (02) 8571 9099

  • For further information on the criteria and application process, click here

Looking well ahead

Kelle Hampton's blog Enjoying the Small Things is on our list of 'Blogs we read' (scroll down the right hand column of this page) because she consistently writes thoughtful posts that resonate with families, particularly those of young children with Down syndrome, illustrated with her beautiful photos of her family life.

In this post, If you build it they will come, she talks about imagining 5 year old Nella's future, and taking an opportunity to actually see some of the possibilities up close, by meeting with and interviewing some people with Down syndrome enrolled in a college program.

More on post-secondary education:

Centre for Disability Studies (University of Sydney), March 2015
Ten students with an intellectual disability have joined the Inclusive Education Program hosted by the Centre for Disability Studies to participate in lectures and university life over the next two years. The semester kicked off with a range of activities including an Orientation Day ...

A college experience for students with intellectual disabilities
Jeff Walker,, 16th February 2015
College might seem out of reach for students with intellectual disabilities. But some area colleges and universities are offering programs to make it a reality. Not only are these students getting a taste of the college experience, they're acquiring the skills and knowledge necessary for them to succeed in the workplace while matching them with careers to best fit their talents ...

Study Finds Postsecondary Programs Boost Outcomes
Shaum Heasley, Disability Scoop, 20th January 2015
Individuals with intellectual disabilities who attend postsecondary programs are finding greater success in the job market than those who do not pursue further education, a new study suggests.

Graduates of postsecondary programs reported higher rates of employment since completing high school, according to findings published online this month in the Journal of Intellectual Disabilities. The research offers support for a growing number of programs at colleges and universities specifically geared toward young adults with developmental disabilities ...

Monday, 9 March 2015

Bus Stop Films - new website

Bus Stop Films (Be My Brother, The Interviewer, Heatbreak and Beauty, and many more), international award winning inclusive film maker,  has launched its new website.

Visit to see the excellent work being done in film making by and with people with Down syndrome and other disabilities on both sides of the camera.

You will need to check in often to keep up with their new work and the astonishing frequency that they win awards (and film reviews, such as Nathan Basha's take on Gladiator).

Genevieve Clay-Smith has taken Bus Stop Films to great 
heights since first working with people with disabilities at 
Down Syndrome NSW. She is currently 
NSW Young Australian of the Year in recognition of her work.

International Women’s Day: disability-inclusive domestic and family violence services

Yesterday was International Women's Day and to mark the occasion, Domestic Violence NSW Inc. (DVNSW) and People with Disability Australia (PWDA) have launched a toolkit designed to enhance the domestic and family violence sector's response to violence against women with disability. Australian women with disability are 37.3% more at risk of domestic and family violence. In NSW, over 43% of women experiencing personal violence have disability or a long-term illness, meaning that they experience violence at twice the rate of other women.

Many of the services designed to support women leaving violence are not physically accessible to women with disability, information about them is not available in alternative formats, and attitudes or policies may not be disability inclusive. As a consequence, many women with disability don’t get the assistance that they need. To support services to address this, PWDA and DVNSW have developed a package of three informative and practical documents covering disability awareness, an accessibility audit, and guidelines for managing change within the service. These are available today for download from the DVNSW and PWDA websites.

Moo Baulch, CEO of Domestic Violence New South Wales, said, "We know that women with disability experience barriers to accessing domestic violence support services, whilst specialist disability services may not understand the dynamics of power and control in abusive relationships. Therefore, women with disability may remain in situations of violence because they believe that services will not be able to support them. This project is designed to be a first step in addressing that gap and to encourage services to be intersectional in their philosophy, and accessible in their practice."

Therese Sands, Co-CEO of People with Disability Australia, says, "This project builds on PWDA's long experience and extensive expertise in advocating for better prevention of and response to violence against people with disability, especially women and girls. We hope that this collaborative venture will model the inclusion of women with disability for all violence prevention response programs being developed both at a state and a federal level."

The project will be piloted in domestic and family violence services in NSW, with the evaluation informing future recommendations for best practice and increased accessibility. DVNSW and PWDA will provide support to these organisations throughout this process.

Friday, 6 March 2015

Weekend reading and viewing: 7th - 8th March 2015

Diversity and Inclusion – Love Has No Labels
Ad Council, 3rd March 2015
While the vast majority of Americans consider themselves unprejudiced, many of us unintentionally make snap judgments about people based on what we see—whether it’s race, age, gender, religion, sexuality, or disability. This may be a significant reason many people in the U.S. report they feel discriminated against. Subconscious prejudice—called “implicit bias”—has profound implications for how we view and interact with others who are different from us. 

learning disability today, 4th March 2015
Taking part in dance classes helps improve the physical and mental wellbeing of students with special educational needs (SEN), according to research from the Institute for Voluntary Action Research.

The researchers found that of the young people who participate in dance classes 88% feel better able to express themselves and 75% feel more physically fit ...

This Is Just a Start ...
Dave Hingsburger, Rolling Around in My Head, 5th March 2015
"In the summer people can see I have Down Syndrome and they stare at me all the time. In winter, with my (hood) up, they treat me nicer because they can't see me very well."
Amy Julia Becker,, 5th March 2015
When our daughter Penny was diagnosed with Down syndrome at birth, I experienced many of the emotions that are typical for parents who receive unexpected news about their child. I felt guilt, sadness, and fear, especially when I looked ahead at what seemed like an unknown and difficult future for our family. Back then, one of my biggest sources of sorrow stemmed from my belief that Penny wouldn’t share my love of reading ...
Parker Myles, 5th March 2015
... These three siblings all have designer genes- ALL three children have Trisomy 21, the most common form of Down syndrome. Trisomy 21 is a random event and not hereditary, so it is amazing that this family has three beautiful biological children with the condition ...

Inclusive Education Program kicks off Semester 1
Centre for Disability Studies (University of Sydney), March 2015
Ten students with an intellectual disability have joined the Inclusive Education Program hosted by the Centre for Disability Studies to participate in lectures and university life over the next two years. The semester kicked off with a range of activities including an Orientation Day ...

Why I chose to homeschool our son who has Down syndrome
Kari Wagner-Peck, Daily Life, 5th March 2015
... our son, who has Down syndrome, attended public school in a regular classroom setting — often referred to as inclusion — at our request. After two years we realised school was hindering his education.

In school, he was hugged and picked up by other children. He was helped by peers whether he wanted it or not. Our son is very small and has difficulty being understood. Even when he yelled, "Stop!" he was mostly ignored. His identity was that of the class mascot. He sat in the back of the classroom while other students participated in group activities, counting to four with his one-to-one aid. At home, he could count to 50 ...

Embracing Wade, 2nd March 2015
Recently Wade’s communication has been really taking off, and with it has come a new sense of independence and knowledge about what he likes and doesn’t like. He is more opinionated and his sense of humour is really coming alive! Now that there is a bit of to and fro to our conversations, it’s like he has more ownership in a conversation which is beautiful to watch ...

A Non-Random Act of Kindness by Kerry Fender
Kerry Fender, Down's Syndrome Association (blog), 27th February 2015
... ‘I heard on the grapevine that you’d had a baby with Down’s syndrome,’ she said. ‘I didn’t know anyone else who’d got a child with the condition when I had my boy, and I just wanted to say this to you: the scary times — when they’re little and they’re poorly — they do get better.’ She cooed over Freddie and we swapped stories ...