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 

Raising Expectations

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 www.scrapheapadventureride.com.au 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 scrapheapadventureride.com.au or contact Perry Gilsenan at info@scrapheapadventureride.com.au.

Media follow-up:

High-resolution images can be downloaded here.

Media Contact: Joel Smith, CDMedia

Email: joel@cdmedia.net.au Phone: 03 9583 8377

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).

7 Ways to Involve Grandparents in the Life of your Child with Special Needs

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, 13wthr.com, 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" ...

Down Syndrome - Autism dual diagnosis: new Down Syndrome Australia page

Down Syndrome Australia has launched a new Facebook page for people with a dual diagnosis of Down syndrome and Autism Spectrum Disorder and their families.

It will be a place for sharing information and support about the dual diagnosis of Down syndrome/Autism Spectrum Disorder - DS/ASD.

• Visit the page here. and click 'like' to join the group

Library Thursday: 27th March 2014

The Julie Cromer Library Resource Centre
High T 4321on 21st March at the State Library NSW, in celebration of World Down Syndrome Day, marked the launch of Down Syndrome NSW Library catalogue which is available to view by typing the following into your browser's address bar: library.downsyndromensw.org.au

Special Guest, The Hon. John Ajaka, MLC, Minister for Disability Services, announced that our library will be named The Julie Cromer Library Resource Centre. Julie Cromer is well known to many of our members, she was our first Librarian and has been a champion for all people with intellectual disability and their families to have access to the best information and resources available.

Library shelf - new title

Now I See, (Ed) Angela Blakston
Dealing with a diagnosis of Down syndrome for a child can seem, at least initially, to be one of the biggest challenges a parent may ever face. Yet many who have taken this path, with the value of time, wisdom and hindsight, would now not have life – or their child – any other way.

In Now I See, 50 parents from Australia and New Zealand tell their personal and poignant stories of how they came, not simply to accept, but to embrace and celebrate life with their child with Down syndrome.

A number of Down Syndrome NSW members have their reflections published in this volume.

Visit the Now I See website.

Accessible Arts eNewsletter, March 2014 issue

Beyond 'awareness'

We're still catching up with some of the many, many fine blogs and articles written for and about World Down Syndrome Day - here are two thoughtful and thought provoking posts that look beyond PR campaigns:

Resting on World Down Syndrome Day

Margaret Bender, The Ordinary Life of an Extraordinary Girl, 21st March 2014
... Tens of thousands of families with children with Down syndrome as well as people with Down syndrome are wearing T-21 tee shirts, mismatched socks, and donning yellow and blue for Down syndrome awareness day. Me, I am sharing others' posts and liking lots and lots of statuses, but beyond that I am a wall flower ...

World Down Syndrome Day - The Long Game. Or why cute and happy is not enough.

David Perry, How Did We Get Into This Mess, 21st March 2014

... When it comes to the cutesy and commercialized elements of the Down syndrome internet, I am a curmudgeon.

My basic argument is this. Cute pictures are nice. They are, however, the low-hanging fruit. They render our children as objects to coo over, and you know what, my son IS cute. Most kids are cute. Cute is what kids do. But the labels of cute and sweet persist past the delicate phases of toddlerhood and infancy, defining even the perceptions of teenagers and adults. What about the moments in which humans, real, complex, three-dimensional humans, are not so cute? ...

Good health: news from NSW CID

NSW Council on Intellectual Disability's enews, published monthly and circulated by email, is an excellent source of information of interest to people with intellectual disabilities and their carers. Subscribe here. The March 2014 issue included these news items on health matters:

Alzheimers NSW seeking participants for DVD 

Alzheimer’s NSW is developing a DVD resource for those supporting or working with a person who has an intellectual disability and dementia. Do you know of anyone who may be interested in participating? For more information email here.

Diabetes care manual Ed Health Australia has published a new diabetes care resource:  Diabetes Care and Support of People with Intellectual Disability or Acquired Brain Injury Manual and Resources. It is designed to assist support workers and health professionals to empower people with disabilities to be actively involved in their diabetes care.

• Preview the manual here.

World Health Organization Report
World Report on Disability. Significant contribution to implementation of the Convention on the Rights of Persons with Disabilities and valuable resource for policy and program development.

• Read the full report.

News and commentary on the NDIS (18)

When everyone counts
Michael Short, The Age, 24th March 2014
... ''When you invest in programs and services that will enable a better life for people like me, what you're going to ultimately find is that you are not just investing in that disabled person, you are investing in programs and services that are good and beneficial for everyone, where everybody wins and everybody gets a benefit .."

We can deliver NDIS on time and get it right
Craig Wallace, theguardian.com, Friday 21st March 2014
Yes, time was an issue – but the capability review’s comparison of the National Disability Insurance Agency to a half-built plane flying through the air is over the top ...

• A review of the capabilities of the National Disability Insurance Agency, January 2014

Disability service workers to protest at privatisation plans

Anna Patty, Sydney Morning Herald, 19th March 2014
Thousands of disability service workers will take industrial action to slow down the roll-out of the National Disability Insurance Scheme in protest at plans to privatise home care services.

The Public Service Association representing about 3500 members who work in government disability services across NSW has passed a motion to introduce work bans affecting implementation of the NDIS ...

NDIS: individualised funding must remain core policy
Dr George Taleporos, Ramp Up, 19th March 2014
While some block funded services can deliver great outcomes for some, Dr George Taleporos believes they will never be truly accountable to service users ...

We should welcome NDIS scrutiny

Craig Wallace, Ramp Up, 17th March 2014

... People are understandably worried about any review of the Scheme we've all fought hard to secure, but I welcome robust oversight, scrutiny and transparency. We all should.

This is nation building reform matching the creation of Medicare, the GST implementation, and the introduction of superannuation. It needs to be the best it can be ...

NDIS: helping people work and participate
Every Australian Counts, 17th March 2014
We hear a lot of talk about the cost of the NDIS, but let’s not get side-tracked. What our political leaders and the public need to really understand is the economic return on investment that the NDIS will generate, as it provides the platform for greater social and economic participation for people with disability and their families ...

Bruce Bonyhady defends National Disability Insurance Scheme

Dan harrison, Sydney Morning Herald, 15th March 2013

The architect of the National Disability Insurance Scheme, Bruce Bonyhady, has hit back at suggestions by former Treasury boss Ken Henry that the nation cannot afford such programs without tax increases or budget cuts ... He said modelling by PricewaterhouseCoopers had shown that in the absence of an NDIS, government spending on disability would exceed the projected costs of the scheme within a decade ...

NDIS mastermind awarded Honorary Doctorate at University of Melbourne

University of Melbourne, 14 March 2014
Disability campaigner Mr Bruce Bonyhady AM will be awarded an honorary doctorate, the highest honour from the University of Melbourne, at a ceremony to be held tomorrow. Mr Bonyhady is the architect of the National Disability Insurance Scheme (NDIS), widely hailed as a milestone in Australia’s cultural history on a par with the introduction of universal health insurance in the 1970s ...

Does the NDIS really offer choice?
Todd Winther  Ramp Up, 12th March 2014

To me, the words 'disability' and 'choice' are oxymoronic. It is one of the reasons that I have been an early and harsh critic of the National Disability Insurance Scheme (NDIS) ...

Congratulations Chris Bunton, dancer and theatre artist

Congratulations to Chris Bunton, who has named by Minister for the Arts, George Souris, as one of the 13 recipients of this year's NSW Amplify Your Art Grants.

“The Amplify your art program supports artists with disability to live creative lives and to fulfil their artistic aspirations,” Mr Souris said.

“The funding is part of the NSW Government’s two-year, $1.5 million funding commitment to boost access to arts and cultural activities for people with disability across NSW.

“These grants help foster a lively arts culture in NSW, promote creative expression, and support audience engagement and learning.

“This funding will support a range of professional development opportunities for the artists including mentoring, residencies and training in new skills.”

Minister for Disability Services, John Ajaka, said this was a great initiative for people living with disability to unlock their creative abilities.

The Minister's media release listing all the awards said of Chris's award:

Emerging dancer and theatre artist, Chris Bunton (St Clair) will receive $10,000 to undertake dance and theatre training programs and work experience with Kay Armstrong at Connect Studios, Parramatta. 

Chris is an active young man, involved with the arts and his community through many activities at which he excels.  He has previously featured in a number of blog posts here, in Special Olympics events, and in the general press. See his thoughts about dance in this interview for Accessible Arts during the Catalyst Dance Masterclass series in 2013, and his artist's profile for Beyond the Square's Ruckus Ensemble here.

Well done, Chris - we look forward to seeing how your dance and theatre practice develops with your Amplify grant.

The full list of Amplify your art grants for 2014 is available here.

In celebration of World Down Syndrome Day 2014: an indulgence of media

World Down Syndrome Day, last Friday, attracted some high profile media attention, spreading awareness across the globe and across communities. There were many beautiful photos and stories, and some really fantastic videos that went viral - all ading up to the best year for media yet.

• Down Syndrome Australia has posted links to national media here.
• For links to international events and media, including video of the United Nations Conference in New York, visit the World Down Syndrome Day website. 

These are some of our other favourite media moments that came to our attention on the day:

Day 21 of the (US) National Down Syndrome Congress's '21 quotes for 21 days', is from the NDSC's Self Advocates Resolution:

Links to each day's quotes are in this post.

Watch this video, and just try not to smile:


Link to this video on You Tube

World Down Syndrome Day: Why I Am Confident About the Future

Dave Hingsburger, Rolling Around in My Head, 21st march 2014
I met a man with Down Syndrome.
He loved his wife so.
I met a woman with Down Syndrome.
She loves her job, goes eagerly every morning ...

Meet the 2014 Heroes - Canadian Down Syndrome Society

Karachi Down Syndrome Program video for World Down Syndrome Day

Today Show, Ch 9, 21st March 2014
Features the Italian video that has gone viral over the past  couple of weeks, and an interview with the founder and one of the members of Melbourne dance group, eMotion 21.

Reclaiming possibility
Embracing Wade, 21st March 2014
... It wasn’t until I met Wade and got to know him that I started to realise that there was a whole raft of qualities and aspects to him that I didn’t expect. I discovered that not everything (hardly anything!) on the long list of doom and gloom applied to us and I realised that life wasn’t quite as hard as I expected it to be ...

• See our previous 'In celebration of World Down Syndrome Day' posts for more links.

Weekend reading and viewing: 22nd - 23rd March 2014

World Down Syndrome Day Edition

World Down Syndrome Day is for all of us
Sipping Lemonade,18th March 2013MARCH 18, 2014
... The heart of this day is for anyone who is or loves someone who is human.

It’s World We’re-All-Created-Equal Day.

World We-All-Matter Day.

It’s World Don’t-Count-Me-Out Day and World I’ll-Surprise-The-Heck-Out-Of-You Day ...

Our story: siblings, Down syndrome, and unexpected beauty

Mark Leach, Down Syndrome Prenatal Testing, 13th March 2014
A good friend found this photo of my kids earlier this week and posted it to Facebook. I found myself transfixed by it. I wonder if you see what I see?

Down syndrome: a year of grief and joy
Genevieve Shaw Brown, Good Morning America (ABC News), 15th March 2014
... "But he’ll also know that even though I was scared, my love for him was stronger than the fear. And that he has brought me nothing but pride and joy."...

Understanding the Spectrum: Severity of Down Syndrome

Jennifer Bekins, Talk - Down Syndrome, 16th March 2014

... I recognize the importance of understanding how a child learns and interacts with others; however, I see this as a very different type of question than the high-functioning/low-functioning inquiry ...

Getting to know Rosie

Jamie McCallum, Scotland Herald, 16th March 2014

... Over the last 12 months I have learned that Down's Syndrome is neither awful nor does it have to be an affliction for those who have it. Children and adults with Down's Syndrome are often very happy, contented individuals. Not only that but it appears that their capabilities, opportunities and achievements are increasing exponentially ...

3/21 a day in the life - a blog hop
Down Syndrome Blogs - celebrating World Down Syndrome Day blogger style

My Turn: Love for special-needs brother helps overcome societal ignorance

Pat McElroy, Daily Breeze News, 16th March 2014 (reprint)

... My mom, who was among the most shy of people, soon started writing letters to the editor every time she felt the “retarded” were portrayed in a less that favorable light. During one memorable exchange with Leon Uris, author of “Exodus,” she extracted a written apology and correction from Random House during a reprint of his book “A Terrible Beauty” because he had casually used the term Mongoloid. She still has his handwritten apology. Plus an autographed copy of the book for Matthew ...

Chromosomes R Us - a celebration for World Down Syndrome Day
Shebang Inclusive Learning (UK), 20th March 2014
A short film by actors with Down Syndrome  (and a narrator with a fabulous accent) on how Trisomy 21 occurs. Made by Shabang Inclusive Learning in collaboration with Mediapreview (www.shabang.org.uk)

Down Syndrome International announces recipients of the the 2014 World Down Syndrome Day Awards

Down Syndrome International (DSi) is delighted to announce the recipients of the 2014 World Down Syndrome Day Awards. 2014 is the fifth 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.

Read the list of recipients and the achievements for which they are recognised here.

In celebration of World down Syndrome Day 2014 (8): UN conference

Today is World Down Syndrome Day - a day to celebrate the lives of people with Down syndrome worldwide.

For the third time, people with Down syndrome will be recognised and celebrated by the United Nations, with a one day event in New York. Speakers will include five people with Down syndrome:

The 3rd World Down Syndrome Day Conference, based on the theme "Health and Wellbeing - Access and Equality for All" will take place at United Nations Headquarters in New York, USA on Friday 21 March 2014 in the Economic and Social Council Chamber from 1.30pm-6pm. Registration is FREE OF CHARGE. 

• Watch the UN WEBCAST LIVE on Friday 21 March from1.30pm-6pm (EDT) in English, Spanish or Portugese. 
• Download the CONFERENCE PROGRAMME.
• Download SPEAKER PRESENTATIONS and view biographies. 
• Registration still open - REGISTER HERE TODAY.

All people with Down syndrome have the right to access healthcare when required on an equal basis with others without discrimination and with proper assessment of the specific health needs of the individual ...  World Down Syndrome Day 2014

Here are some excerpts from the introduction to the five people with Down syndrome from around the world, who will speaking at the UN - you can read their full biographical notes at the links above:

Ms Jaspreet Kaur Sekhon is 33 years old, and has been working as a Teacher’s Aide for 13 years. She is also a self-advocate and an active member of Down Syndrome Association, Singapore and an Ambassador of Down Syndrome International. She enjoys dance and music, travelling and meeting people. Jaspreet tries to have a healthy and active lifestyle ...

Débora Moura Araújo Seabra was born in 1981, in Natal, Rio Grande do Norte, Brazil. She is a high school graduate who has been exclusively educated in regular schools. Through the Down Syndrome Association’s Action and Dignity Programme she has held several internships as a sales assistant, receptionist, model, and assistant teacher. After completing a teaching class and several internships, Ms. Seabra decided she wanted to be a teacher, which is her current profession ...

Sara Pickard is a self-advocate who has Down’s Syndrome and lives near Cardiff, in South Wales. She has worked full-time for Mencap Cymru, a charity which works on behalf of those with learning disabilities throughout Wales, for nearly eight years. Her current role is as Participation Officer for the ‘Inspire Me’ project which involves her delivering training to young people with learning disabilities and a range of additional needs, in schools and colleges throughout Wales. She has worked as a volunteer in Lesotho and Botswana in Southern Africa as part of her work, and was a speaker at the World Down’s Syndrome Congress in Cape Town, South Africa in 2012. She has also been a keynote speaker at a number of conferences held in Wales dealing with education and health issues and is a Trustee of her local Down’s Syndrome Support Group ...

Benjamin Majewski is a Resource Specialist with the Down Syndrome Program at Massachusetts General Hospital in Boston, Mass. He is also employed by O’Hara’s Restaurant in Newton, MA as a busperson. His third job is a seasonal position with the grounds crew of the Boston Red Sox baseball team. Ben is currently a student with the Transitional Scholars Program of MassBay Community College, a program which supports people with intellectual disabilities at the college level. In 2011, Ben was the keynote speaker for the Massachusetts Down Syndrome Congress annual conference ...

Thenjiwe Ndebele is the National Chairperson of the Self Advocacy Movement of South Africa (SAMSA) which is a programme of Down Syndrome South Africa (DSSA) and represents SAMSA on the national DSSA board. She was appointed by the self advocates at a meeting in 2013 and will serve a four year term ...

Down Syndrome International WDSD 2014 poster

In celebration of World Down Syndrome Day (7)

Day 19 of the (US) National Down Syndrome Congress's '21 quotes for 21 days', is from Ashley in Alabama:

Links to each day's quotes are in this post.

• Celebrating World Down Syndrome Day 2014 with Down Syndrome Australia

Getting a Life - Sally Richards in conversation

Sally Richards is well known in the disability community as an advocate and speaker, and spoke about Circles of Support, with families for Down Syndrome NSW, during the Up, Up and Away Project in 2007. This week, she spoke for nearly an hour on ABC Radio, about developments in hers and Jackson's lives since then.  Her conversation with Alex Sloan is available as an online audio file, MP3 to download, or as a podcast (48m 26s).

Sally Richards, Conversations, with Alex Sloan (ABC Radio Local), 17th March 2014

Sally's third child, Jackson, was born with ... a profound intellectual disability ... For 14 years Sally believed ... that Jackson would lead a very limited life and always need care. But Sally was perusaded more was possible for Jackson, and she devised a creative way to make it a reality.
Jackson now lives in his own home in an 'intentional community' and has a job which gives him independence and a visible role in the community.

One of Jackson's fellow residents is a young man with Down syndrome - you can read more about each of the residents and their homes on the Getting a Life website.

• Sally Richards spoke at TEDX Canberra in September, 2012 on 'Creating a meaningful life for Jackson'

In celebration of World Down Syndrome Day (6) ... 'This Kind of Love'

International Down Syndrome Coalition:

• Direct You Tube link

In celebration of World Down Syndrome Day (5) ... Dear future Mom

This short Italian video has met with a very positive response across the internet over the last few days:

• Direct You Tube link

Performance arts events

DirtyFeet presents 'Out of the Studio'
2 new contemporary dance works-in-progress by Rob McCredie and Sarah-Vyne Vassallo7pm Friday 21 March and Saturday 22 March 2014

Carlton (Sydney)

Just a Bit .. Funny ... 

A Beyond the Square project, at the Sydney Comedy Festival 

6pm Sunday 4th May 2014

Marrickville

Merry Makers Australia gala concert
4th May 2014
Sydney Opera House

Trevor Parmenter Annual Lecture: Prof Matthew Janicki

Matthew P. Janicki, is research associate professor of human development at the Institute of Disability and Human Development at the University of Illinois at Chicago and an Adjunct Professor at the School of Rural Medicine at the University of New England. 

Currently he serves as the co-chair of the National Task Group on Intellectual Disability to Dementia Practices in the USA. 

Tuesday, 8th April 2014 

Lecture 6pm – 7pm followed by light refreshments

Camperdown 

No charge, however bookings are essential 

RSVP: By Wednesday 2nd April 2014

Detailed flyer and booking form 

NDIS webinar #4

Details of content, times and registration here

In celebration of World Down Syndrome Day (4) ...

21 Portraits
A Facebook album of 21 beautiful black and white portraits of people with Down syndrome, by photographer Anna Jurkovskai.

Published in celebration of World Down Syndrome Day the Down Syndrome Association of Latvia.

Weekend reading and viewing 15th - 16th March 2014

21 quotes for 21 days
(US) National Down Syndrome Congress, in celebration of World Down Syndrome Day.
Day 13: For a homework assignment explaining Down syndrome, Zachary wrote:
"Down syndrome is a talent, and not everyone has it."

Just a Bit ... Funny

Beyond the Square, 20th February 2014
Check out the video we made for Stage 1 of our Just a Bit .. Funny project! We think it's pretty funny...

Just a Bit .. Funny will be at the Sydney Comedy Festival on Sunday 4th May at 6pm, at The Factory in Marrickville.

Rape case not just about Down syndrome

David M. Perry, CNN, 11th March 2014
... Jane has Down syndrome and the growing national outrage to this case has focused, with reason, on her disability. But Down syndrome is only part of the story ...
The outrage is not only because this judge didn't understand Down syndrome, but that judges frequently impose their perceptions on cases of sexual assault, reducing sentences even for convicted rapists on the grounds that the victim didn't act "correctly." Jane's troubling case reveals the intersections between rape culture and the way we strip agency from people with disabilities ...

People With Disabilities Impetus For New Teaching Hotel

Michelle Diament, Disability Scoop, 10th March 2014
Construction is set to begin on a first-of-its-kind hotel where teaching and employing people with disabilities will be just as important as accommodating overnight guests ...

How Back to Back challenges the way we see actors with disabilities
Anna Theresa Scheer, The Conversation, 11th March 2014
... Much successful work has been done by disability advocacy groups and national organisations to improve basic rights for people with disabilities, such as the right to employment, full access to transport and venues, and increasing government awareness of disability issues. Still, the status of actors with disabilities remains a work-in-progress in the often elite institution of theatre ...

3 essentials for a great ask

Libby Ellis, InCharge, 11th March 2014
We recently held a workshop called Nurturing your Tribe. We were thrilled to find people with disabilities and their families attended with other people they had made an ask of; like becoming a housemate, or a friend whose strengths could help achieve something. We just loved playing a part in nurturing these vital relationships! ...

Disabled not rorting the support pension, Disability Discrimination Commissioner Graeme Innes hits back
Judith Ireland, Sydney Morning Herald, 12th March 2014
Disability Discrimination Commissioner Graeme Innes has hit back at the idea that there are too many people on the disability support pension, slamming claims that the system is being rorted as "completely unhelpful".

In the wake of fresh reports that Australia's spending on the disability support pension is unsustainable, Mr Innes said that there was no crisis with the payment ... "Why would you want to be on DSP? Why would you want live on less than $20,000 a year?" ...

Doctor with disabled son fights deportation

Kathy Sundstrom, Sunshine Coast Daily, 11th Mar 2014
A Noosaville doctor is fighting to stay in Australia after his middle son, who has intellectual impairment and epilepsy, failed the health assessment component of a permanent visa application ...

The Others
Samantha Connor, The Stringer, 10th March 2014
When is a home not a home? When it’s an institution.
This week, disability advocates were horrified to discover that the Newcastle Greens, together with the NSW Nurses and Midwives Association, were advocating against the closure of institutions ...

People with Down syndrome in the media

Woman with Down Syndrome Fights for Her Freedom – and Wins

Cathy Free and Nicole Weisensee Egan,  People, 7th March 2014
Jenny Hatch wasn't trying to be a hero. She just wanted to live with the family she loved. But while the 29-year-old woman with Down Syndrome was fighting for the right to make her own decisions about where to live and whom to live with, she also created a path for others with disabilities to follow ...

Focus on Oliver Hellowell: Photographer with Down's syndromeDowns Side Up, 28th February 2014
At nearly 18, Oliver is already carving a reputation for himself as a respected wildlife and landscape photographer. The Oliver Hellowell website showcases his unique work which is available for sale. Oliver also has Down's syndrome ...

Aussie model with Down's makes UK debut
Australian Women's Weekly, 25th February 2014
He's just four years old but Julius Panetta is already a modelling veteran with four major fashion campaigns under his adorable belt ...

Survey finds school system failing some children with Down Syndrome
Selina Bryan, ABC News, 4th March 2014
... Inadequate fencing and supervision are some of many issues highlighted in an education survey of 30 Tasmanian parents who have children with Down Syndrome. Down Syndrome Tasmania found there were many inconsistencies in the treatment of children with the genetic disorder in the public, private and special school systems ...

Lupita Cano a bold, unique artist - art for the ages

Jacquie Peterson,Apostrophe, undated
... Lupita describes her studio in Seattle, Wash., as a happy, warm and friendly place. On a typical day, you’ll find her, smock on, working on her latest piece. A disciplined artist for more than 15 years, Lupita works as many as 18 hours or more per week ...

Actor who cheered those around him

Peter Phillips, Dancer/actor 1960 - 2014
Jack Gregory, The Age, 7th March 2014
... Peter's parents had had no hesitation in deciding that, whatever the challenges in raising a child with Down Syndrome might be, they would include him in their family ... One of his favourite poems was Blake's Tyger, tyger burning bright. Peter burned brightly throughout his life.

Same Waves takes off
Emma Murphy, NBN News, 11th January 2014
For children with special needs, participating in team sport can be a stressful and challenging task. But Cooks Hill Surf Lifesaving Club is hoping to change that, with a surf awareness program for children who need a little extra help in the waves – and already it’s struggling to meet demand ...

Good health: on mental health, for direct support workers

• Volume 3, Issue 3 mental health - now available free online here
• Back issues of Service, Support and Success are all here

In celebration of World Down Syndrome Day (3) ...

As the writers suggest, this blog post from the Adult Down Syndrome Clinic provides information about people with Down syndrome appropriate for upper primary/young high school students, in response to a series of question posed by a (US) middle school student.

And you could back it up with the video Just like you - Down syndrome, available freely online and/or for purchase here.

Wordless Wednesday

Positions available at Down Syndrome NSW

Down Syndrome NSW is seeking

• a Database/Admin Assistant - see the advertisement here
• a Community Events Co-ordinator - see the advertisement here

For more information about either position, please contact Scott Bridges at scott.bridges@dsansw.org.au

Verve Ensemble, Bankstown - dance, theatre

Bankstown Arts Centre is establishing the VERVE Ensemble for emerging performers, aged between 18 and 35 years. The Verve program will provide integrated contemporary dance training, dance and theatre skills development and will be facilitated by Sarah-Vyne Vassallo, alongside a collective of industry professionals.

The participants will be involved in collaborative process that includes skills building and improvisation to develop new contemporary work. Verve will have a particular focus on artist development and the promotion of independent practice for emerging artists with disability.

Monthly workshops from Saturday 29th March 2014, 10am – 3pm.
Some dance experience is desirable but not essential.  Open to people with and without disability (low to moderate support needs). Registration is essential, numbers will limited

For more information, contact Sarah-Vyne Vassallo or Vandana Ram - Arts Centre Director
P 9707 9989   E vandana.ram@bankstown.nsw.gov.au

Bankstown Arts Centre (wheelchair accessible facility)

5 Olympic Parade, Bankstown

DS Hunter World Down Syndrome Day celebration

News and commentary on the NDIS (17)

Click here to read this issue online

‘A Strong Voice: Self-Advocacy’, NDIS Webinar  - online video

National Disability Insurance Scheme News, 7th March 2014

If you missed the recent webinar or would like to revisit the discussion, ‘A Strong Voice: Self-Advocacy’ is now available online. Accessible formats include video, voice, captioning, transcript and Auslan ...

NDIS Taskforce releases $2.4 million for disability services
Harry Belot, The Canberra Times, 28th February 2014
The ACT NDIS Taskforce has released a further $2.4 million of funding to support Canberrans living with disabilities in the latest round of the Enhanced Service Offers, a precursor to the NDIS ...

National Disability Insurance Scheme facing review of ‘core’ functions

Rick Morton, The Australian, 27th February 2014
The chief executive of the National Disability Insurance Agency has revealed the organisation has hired consultants to review the “core and critical functions” of the insurance scheme, even as the minister responsible for it assured Senate estimates there would be no changes to funding, scope or delays to the rollout ...

Planning starts for NDIS workforce

PS News 398, 25th February 2014
A report into workforce issues to help develop a strategy in the lead-up to the introduction of the National Disability Insurance Scheme (NDIS) has been ordered by the Government. National Disability Services (NDS), the peak body for non-government disability service organisations, had been contracted to deliver the report, Assistant Minister for Social Services, Senator Mitch Fifield, said.

Mr Fifield has met representatives of the NDS to identify priority areas ... The Final Report will be delivered to the Government in August 2014 ...

Our new disability scheme is changing lives. Don't let the Liberals destroy it
Jenny Macklin, The Guardian, 24th February 2014
On behalf of thousands of Australians with disability, their families and carers, I have one very simple message for the government: we aren’t turning back ...

NDIS: First experiences (audio file - 21 m)

Life Matters, ABC Radio National, 24th February 2914

What has been the experience of the first users of the NDIS? In July last year four locations across Australia were chosen to host trials of the National Disability Insurance Scheme (NDIS). Life Matters speaks to two mothers, both have disabled children, about what the NDIS has been like for them.

Quality Assurance and Safeguards Working Arrangements for the Launch of the NDIS in New South Wales - As agreed between the Commonwealth of Australia and New South Wales

The New South Wales Government and the National Disability Insurance Agency have worked to ensure that the strengths of the existing quality assurance and safeguards in New South Wales apply to National Disability Insurance Scheme participants in the Hunter trial.

This document, dated October 2013 is now available online, from the NSW Ageing, Disability and Home Care website.

Latest additions to our 'events' pages

High T 4321 - celebrating World Down Syndrome Day
21st March 2014 - State Library of NSW, Sydney

Everyone Connects - connecting people with complex communication needs
Independent Living Centre
20th March 2014 - Wagga Wagga
27th - 28th March 2014 - Ryde
1st May 2014 - Tamworth

How to use advocacy skills to achieve a good life for your family member with developmental disability

Family Advocacy workshops

Throughout April 2014 - Coffs Harbour, Newcastle, Penrith, Ryde, Merrylands

Throughout May 2014 - Dubbo, Bathurst, Bateman's Bay, Mittagong

Setting the Pace

(US) National Down Syndrome Congress annual Convention 

11th - 13th July, 2014 - Indianapolis

• Full listing of Down Syndrome NSW events
• Full listing of other events

In celebration of World Down Syndrome Day (2) ...

The (US) National Down Syndrome Congress and Down Syndrome in the Arts and Media have joined to present  a quote-a-day from people with Down syndrome, in the lead up to Word Down Syndrome Day on 21st March:

World Down Syndrome Day - 21 quotes in 21 days

Day 1
Day 2
Day 3
Day 4
Day 5
Day 6
Day 7 
Day 8
Day 9
Day 10
Day 11
Day 12
Day 13
Day 14
Day 15
Day 16
Day 17
Day 18
Day 19
Day 20
Day 21

Follow National Down Syndrome Congress on Facebook to see the link for each day's quote

Weekend reading and viewing: 8th - 9th March 2014

To The Woman Who Apologized to Me at the Supermarket
Rachel Clarke, Huffington Post (The Blog), 27th February 2014
...We didn't exchange words, just shared in this moment of play and lightheartedness, of finding happiness in connecting with a child ... "I'm sorry," you said and parked your cart next to mine. You sighed, looked at me like you'd just delivered bad news ... "Oh, no, don't be sorry!" I said. But you were already turning your cart, telling the man to follow you ...

Eyes

Dave Hingsburger, Rolling Around in My Head, 1st March 2014
A gentle hand touched the arm of my wheelchair, questioning eyes looked up and me, "Does it still hurt?" she asked, her tone voice conveying that this was a serious and important question. And I, of course, misunderstood it ...

Emily's room
Paul Critchlow, Orange Juice Flavour Sky, 2nd march 2014
What's so different about this room? What makes this room worth writing about? Well, that's the point! It is no different to any other young woman's bedroom ...

This case is shocking. And the judge's reaction is despicable.
Shauna Anderson, mammia, 4th March 2014
It seems in some rape cases you have to actually act like a victim if you’ve been raped ...

My seat on the bus,
Graeme Innes, Howzat?, 4th March 2014
... Seven-year-old Duncan’s parents are worried. He’s about to be suspended from school.... Have you seen situations where a small change can make a big difference?

What Really Happens When You Use the R-Word

John C McGinley, Huffington Post, 5th march 2014
We are free to express ourselves (in accordance with the law), just about any way that we choose to. I do not enjoy hearing the "R" word: "retard" and "retarded." And I will tell you why...

I Am the Person You Hurt When You Say the R-Word

John Franklin Stephens, Huffington Post, 5th March 2014
Sometimes I feel like Professor Van Helsing, or maybe Buffy the Vampire Slayer. I keep trying to kill this thing and it just won't die. Of course, my nemesis is the "r-word," not a vampire ...

Friends of mine
Trailer of an award winning 2013 documentary

• Check out the Down Syndrome NSW Facebook page for link to other contributions to the campaign to stop the use of 'the R-word' as an insult.

Hunter region - netball

'Down Syndrome News' latest issue online

Down Syndrome News, Winter 2013 is now available to be read online, at the (US) National Down Syndrome Congress website.

Lead article:
Managing behavior in children with Down syndrome 
How Understanding Leads to Intervention: Sociability and Social Skills (Part 3)
Mary Pipan, MD, Clinical Director, Trisomy 21 Program, Children’s Hospital of Philadelphia
Many children with Down syndrome have a natural sociability that makes everyone around them smile. This social affinity is a strength to be valued and nurtured. We often hear “he’s the mayor of the school” or “she greets everyone as they walk in the door.” .... Given this sociability, I was surprised to see frequent difficulties in gaining and maintaining social relationships as children got older...

• Back issues of Down Syndrome News
• National Down Syndrome Congress annual Convention 11th - 13th July, 2014  - Indianapolis: Setting the Pace

Research news and commentary #4 for 2014

Click on the title link to read the articles:

Can Down syndrome be treated?
Emily Underwood, Science, Vol 343, 28th February 2014
Although the prospect of treating Down syndrome at an early age, or even in the womb is still far off, one geneticist now calls it an 'an achievable goal' ...
An 'excellent four-page piece on the state-of-the-art in Down syndrome research.' Dr Brian Skotko, Massachussets General Hospital Down Syndrome Program.

Family and Community Services (FACS) Analysis and Research Seminar Series - presentation
Assoc Prof Julian Trollor Chair Intellectual Disabiity and Mental Health, Dept Developmental Disabiity Neuropsychiatry (3DN) UNSW, Family and Community Services (FACS) Analysis and Research Seminar Series, Sydney, 27th february 2014
A review of research undertaken by Prof Trollor and his colleagues at UNSW, available to be viewed online. 

New study suggests prenatal genetic tests could be offered to all pregnant women

Susan Young, MIT Technology Review, 26th February 2014
... In a study published in the New England Journal of Medicine on Wednesday, DNA-based tests outperformed standard screening methods, which include ultrasound imaging and biochemical test of a mother’s blood ...

• New England Journal of Medicine article: DNA Sequencing versus Standard Prenatal Aneuploidy Screening
• Boston Globe news article

Study describes Relationship between Obstructive Sleep Apnea and Cognitive Outcomes
Research Down Syndrome - News, 21st February, 2014
Disrupted sleep is commonly observed throughout the lifespan of individuals with Down syndrome, with an observed incidence of 50-100%. Obstructive sleep apnea syndrome(OSAS) has been demonstrated in studies to be a key contributor to the loss of sleep quality in Down syndrome. OSAS increases with age.

The relation of OSAS to cognitive and behavioral impairment remains poorly understood. This study, supported in part by a Research Down Syndrome grant, describes cognitive outcomes in children with or without OSAS, ages 7-12. The study assessed cognitive outcomes with the Arizona Cognitive Test Battery, a set of psychometric measures that was designed and validated for this group ...

The full text of the paper is available online here.

Citation
Jennifer Breslin et al, Obstructive sleep apnea syndrome and cognition in Down syndrome
Developmental Medicine and Child Neurology, January 2014 (Early view. Online Version of Record published before inclusion in an issue)

New Drugs May Transform Down Syndrome

Recent breakthroughs may lead to pharmacological treatments for the chromosomal disorder
Jenni Laidman, Scientific American, Volume 25, Issue 2, 1st Mach 2014
People born with Down syndrome have always been considered to be incurably developmentally delayed—until now. In the past few years a number of laboratories have uncovered critical drug targets within disabled chemical pathways in the brain that might be restored with medication. At least two clinical trials are currently studying the effects of such treatments on people with Down syndrome. Now geneticist Roger Reeves of Johns Hopkins University may have stumbled on another drug target—this one with the potential to correct the learning and memory deficits so central to the condition ...

After More Than 50 Years, a Dispute Over Down Syndrome Discovery

Elizabeth Pain, Science Now, 11th February 2014
It would have been a personal triumph for Marthe Gautier, an 88-year-old pediatric cardiologist and scientist living in Paris. On 31 January, during a meeting in Bordeaux, Gautier was to receive a medal for her role in the discovery of the cause of Down syndrome in the late 1950s. In a speech, she planned to tell an audience of younger French geneticists her story about the discovery—and how she felt the credit she deserved went to a male colleague, Jérôme Lejeune.

But Gautier's talk was canceled just hours in advance, and she received the medal a day later in a small, private ceremony. The French Federation of Human Genetics (FFGH), which organized the meeting, decided to scrap the event after two bailiffs showed up with a court order granting them permission to tape Gautier’s speech. They were sent by the Jérôme Lejeune Foundation, which wanted to have a record of the talk. The foundation, which supports research and care for patients with genetic intellectual disabilities and campaigns against abortion, said it had reason to believe Gautier would "tarnish" the memory of Lejeune, who died in 1994 ...

Patients with learning disabilities become ‘invisible’ in hospitals, says study

St Georges Hospital, University of London - News, 7th January 2014

Patients with learning disabilities become ‘invisible’ in hospitals, says study ...

'Clogged pipleline' may explain Down syndrome leukemia

Josh Barney-Virginia, Futurity, 3rd March 2014
New insight into a mysterious form of leukemia that can appear and then disappear in children with Down syndrome could have implications for other forms of leukemia and even other diseases. Researchers have linked a mutation causing Down syndrome-associated leukemias to abnormalities in cells that produce platelets, called megakaryocytes ...

Giving children with disability in the Pacific a voice

Radio Australia, 24th December 2013

A team of researchers from Australia and Papua New Guinea has started an innovative study of children with disability in the Pacific ...

Transcript and audiofile (5m 50s)