Today is the last day to register ...

... for this Down Syndrome NSW event, scheduled for Thursday 13th March 2014 at Rosehill:

Details here

World Down Syndrome Day 2014: Down Syndrome International's plans

World Down Syndrome Day is celebrated on 21st March each year.

For World Down Syndrome Day 2014, Down Syndrome International will be focusing on:

“Health and Wellbeing - Access and Equality for All”

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. We will be highlighting that:

1. Having Down syndrome does not make a person unhealthy.
2. Down syndrome is a genetic condition, not an illness.
3. People with Down syndrome may have health issues throughout their lives, just like everyone else and they should have access to healthcare on an equal basis with others.
4. There are specific known health issues which may affect people with Down syndrome, for which accurate, evidence based information is available.
5. Health professionals should be aware of these specific issues when treating a person with Down syndrome.
6. Health professionals should not discriminate against people with Down syndrome by:

• refusing to treat them;

• blaming health issues on Down syndrome in general, or;

• considering only specific known health issues which may affect people with Down syndrome.

Our WDSD Global Video Event and WDSD Conference will both explore this important area of focus.

If you would like to join this campaign, then we very much welcome its adoption into your plans for WDSD 2014. As in previous years, we will share your WDSD World Events on our dedicated WDSD website www.worlddownsyndromeday.org.

For more information on DSi’s plans for 2014, including information materials, visit this page.

• World Down Syndrome Day 2014 and the United Nations

Vale Professor Ben Sacks

Many of our members will know Professor Ben Sacks's name from his writing and conference presentations, and remember him from his visit to Sydney in 2007, with Prof Sue Buckley, and Julie Hughes from Down Syndrome Education International (DSE). This tribute was published by DSE:

Professor Ben Sacks, formerly Chair in Developmental Psychiatry, Charing Cross and Westminster Medical School, University of London, and medical advisor to DSE, passed away peacefully on 26 February. He will be remembered around the world for his extensive work in support of young people with Down syndrome. 

Ben Sacks devoted much of his life to supporting people with developmental and learning disabilities. After training at the University of Cape Town Medical School, he had a distinguished career as a psychiatrist, working at the Maudsley Hospital, Royal Free Hospital and Medical School, and Charing Cross and Westminster Medical School. Professor Sacks was widely recognised as an expert in the health and development of children and adolescents with learning disabilities, especially those with Down syndrome and with autism spectrum disorders. 

DSE is particularly grateful for Ben's many contributions to our work for children with Down syndrome and their families since 1983. He gave considerable time to many of our publications, workshops and conferences, and research - beginning with a study of life for teenagers in 1986. Colleagues and families alike valued his wise counsel and astute advice.

We extend our condolences to Professor Sacks's family, friends and colleagues.

High T 4321: State Library of NSW

Good health: access to mental health services for people with intellectual disabiity in NSW

Assoc Prof Julian Trollor, Chair Intellectual Disability and Mental Health, UNSW)'s presentation on AccessibleMental Health Services for People with an Intellectual Disability at the National Disability Services NSW State Conference, in Sydney on February 11, 2014 is now available online.

One of the major strategies addressed by Prof Trollor is the publication of The Guide: Accessible Mental Health Services for People with Intellectual Disabilities - a guide for providers to be launched in May 2014. 

The Guide is designed to contribute to the goal of

... improv(ing) mental health service access for people with an intellectual disability by developing a guiding framework of action for all front line mental health service providers. 

It was developed with Federal funding (Department of Health), after a period of rigorous consultation and research, with significant input from peak bodies on intellectual disability. Pre-launch information will be available from late March on the Department of Developmental Disability Neuropsychiatry (3DN) website.

In celebration of World Down Syndrome Day (1) ...

Between now and World Down Syndrome Day (21st March), this series of blog posts will feature an ad hoc range of resources  celebrating the occasion, however you choose to do so:

21 Dreams,
(Volume 1 March 2013, Volume 2 October 2013)

Jennifer Buechler and Julie Gallagher, Sycamore Sisters Photography
Each volume is a book of photos and stories about 21 people with Down syndrome, originally produced for World Down Syndrome Day 2013 (Volume 1) and Down Syndrome Awareness Month (Volume 2). Originally published as Blurb books, Volumes 1 and 2 are also now available as Apple iBooks.

Our hope is that after studying the photographs and reading the stories featured in the books, people will perceive the world in a new way - with eyes opened to a life of awareness...acceptance...inclusion...and inspiration. 

10-15% of the total cost of each book (a large portion of the proceeds) goes to Down Syndrome Indiana  (our local Down syndrome organization), which is dedicated to enhancing the lives of individuals with Down syndrome through education, support and advocacy.

The 21 Dreams website also includes a short video featuring the photos from the books.

• 21 Dreams Project on Facebook

Weekend reading and viewing; 1st - 2nd March 2014

How my native language and Down syndrome shifted my perspectives on privilege
Jisun Lee, Offbeat Home and Life, 18th February 2014
I recently came across a saying that uses this word: "삐딱이만 삐둘어진 세상을 제데로 볼수있다." My very, very rough translation goes something like, "Only one who stands crooked can see the true crooked nature of the world."

I've been chewing this over for a while, and I think my peeps are onto something… When we started figuring out that my son had Down syndrome, the world really did tilt for us. Or, rather, we tilted. Hard.

People like us
Dave Hingsburger, Rolling Around in My Head, 19th February 2014
... she walked along side me chatting saying, "People should listen when people with disabilities say 'no' shouldn't they? They should respect what we say." I told her that I couldn't agree more.

How ‘Special Education’ Can Help Children Who Don’t Need It

Catherine Pearlman, Speakeasy (The Wall Street Journal), 18th February 2014

Last September, when my son began second grade, he was placed in the inclusion classroom at our local elementary school. The class consisted for 12 children receiving special education services and 12 children who did not need additional help. The workload is split between two full-time teachers—one general education teacher and one whose focus is special education.
I found it strange that we were never notified of the arrangement. Then, I came to understand why ...

If I knew then what I know now
Ellen Stumbo, Finding Beauty in Brokenness, 21st February 2014
At first, having a child with special needs seemed like an impossible and daunting job. Looking back at the scared mom I was six years ago, I wish I knew then what I know now. If I could go back in time, this is what I would say…

Down Syndrome Awareness 3/21




I don't respect your (or my) intelligence

21+21+21=?, 21st February 2014

... Why does the frightening part about Down syndrome seem to boil down to what not so long ago was known as "mental retardation?"

There are many people in my life and its periphery (lucky for them way out there, lest I'd have dispatched the flying monkeys already) who have sent me articles, videos, stories, and more about what individuals with Down syndrome are capable of, what people with Down syndrome have achieved, what all will be possible regardless, in spite of, in the face of, as well as, and I want to specifically add this as a negative also,because of Down syndrome ...

Coffee Mornings - Hunter Region

Please note a change in meeting times and contact people for Hunter Region coffee mornings in 2014:

Coffee Mornings, Chat and Support - Greater Newcastle Area, Hunter Region 2014

2nd WEDNESDAY of each month 

10am - 12noon 

Cafe/Playground Area at Wallsend Diggers Club 

Drinks and eats available for purchase at the club. 

All Welcome!

For further information contact Lisa Nelson mob: 0408 665 145 or email Candy at dshr@dsansw.org.au

Resources: a new book, and more on key word sign

Stand up for those with Down syndrome
Regina Brett, Cleveland.com, 22nd February 2014
Like any new dad, Rob Snow couldn't wait to show off his beautiful, new, baby boy. But when people realized Henry had Down syndrome, their faces fell and they said the words Rob would come to dread: "I'm so sorry."

The look of sadness and sympathy on their faces made him want to scream. Instead, he wrote a book called, What I Should Have Said ...

• Rob Snow's website, Stand Up for Downs
• Stand Up for Downs on Facebook

What does it matter what signs I use?

In her latest blog post in her series about apps for key word and Auslan signing, Aileen Ryan gives very useful background information on choosing a sign system that best suits your purpose. This post will lead into the next one, in which Aileen will review the app Baby Sign and Learn. Scroll back through recent posts for others in this series, beginning in January.

World Down Syndrome Day - celebrate with T4321

T4321 is almost here. Join us in celebrating World Down Syndrome Day (21st March) by holding a morning or afternoon tea to raise awareness and funds for Down Syndrome NSW.

Go to  T4321 - NSW  for more information or to sign up!

DS NSW can support you along the way, so please don’t hesitate to contact Kate McNamara on 02 9841 4405 or kate.mcnamara@dsansw.org.au if you need assistance.

Wordless Wednesday

Dance, drama classes at Strathfield, starting in March

Back to school ...

Georgie-Rose is in Year 6 this year, so high school is the
next big step! Meanwhile she is settling in to her role as
Sports Vice-Captain for Wattle House. Enjoy your last year of
primary school, Georgie-Rose.

Emily was pleased to go back to school, with her friends
Leah and Scarlett. Her little sister Imke came to wave her
off. The big girls are in year 4 this year, so thoughts about
high school are not too far away ... have a great year 4!

Your back-to-school photos are most welcome, if your would care to share them - please email them to blogeditor@dsansw.org.au

Latest additions to our 'events' pages

Intellectual Disability Network Forum

NSW Agency for Clinical Innovation
7 March 2014 - Concord Hospital

Playing to Their Strengths
Down Syndrome NSW/ACT DSA workshop for primary school teachers
7th March  2014 - Canberra 

Relationships and Your Rights
For women with intellectual disability.
People with Disability Australia 2 day Training Workshop
11 and 12 March 2014 -  Sydney
Information: 1800 422 015

Playing to Their Strengths
Down Syndrome NSW workshop for primary school teachers
13th March 2014 - Rosehill (Sydney)

Dementia and Disability: the facts, strategies and implications
A symposium hosted by Alzheimer’s Australia NSW, the Centre for Disability Studies at the University of Sydney and the University of New England

Monday 7 April - Parliament House, Sydney

Trevor Parmenter Annual Lecture

Centre for Disability Studies (University of Sydney)

Tuesday 8th April 2014 - Sydney

Special Olympics Australia National Games 2014
20th - 24th October 2014
Melbourne

All Aboard

Australasian Society for Intellectual Disability (ASID) 49th Annual Conference
5 - 8 November 2014 - Fremantle, WA
Call for papers now open

• Cancellation of 2014 Down Syndrome Australia conference
Down Syndrome Australia regrets to announce that the 2014 Down Syndrome Australia conference in Canberra has been cancelled due to lack of resources. We were delighted to receive such a positive response from the community, and hope to reschedule in the future when our resources can support it.

People with Down syndrome in the media

At the Cricket

Debra Jeffris, Down Syndrome NSW eUpdate #1 February 2014

Sam from the South Coast and Jordan from the Central Coast met through Special Olympics and have become great mates. This picture is of them at the T20 cricket in Sydney. It was snapped just as they spotted themselves on the big screen! They had an absolute ball all day playing cricket with Special Olympics followed by going to the evening game at Homebush.

Sam has just come back from Adelaide where he played for the NSW B team. It was hot (45 degrees on the Saturday) but he loved making new friends and the group of 25 boys and young men were beautifully behaved for the 4 days we were there. There was lots of hugging, fun and laughter. NSW didn’t do so well in the cricket but they were definitely the happiest, the most enthusiastic and the loudest!! A great experience.

Woman with developmental disability helps homeless population
Maegan Prejean, KLTV, 21st February 2014

An East Texas woman with a developmental disability is helping the homeless population one plastic bag at a time ...

York photographer David Kenward’s work to feature in London show

Gavin Aichison, The Press, 21st february 2014
Works by a talented photographer from York will be showcased in a national exhibition in London. Images by David Kenward will be displayed in The Reveal exhibition at The Menier Gallery next month. It is the first major visual arts exhibition in Britain to solely promote the work of artists with Down Syndrome, and is timed to open at the beginning of Down Syndrome Awareness Week ...

NDSC Film Expert Reviews “Robocop”

Chess Mitchell, (US) National Down Syndrome Congress, 19th February 2014
Chess has recently reviewed Robocop for our friends at NDSC. These are his findings.

Rome restaurant serves up new attitude toward Down syndrome

Marc Henri Maisonhaute, Yahoo News (via AFP), 14th February 2014

... "We heard good things about it so we wanted to come," said one woman, while her friend added: "Basically it's a normal restaurant -- except the waiters are nice!" ...

Onstage: liberated into other worlds

Keith Gallasch, RealTime #118, December- January 2013-2014
... Anne-Louise Rentell is the director of The Man Who Dreamt the Stars, a group-devised performance about the power of the imagination, produced by Wollongong’s Merrigong Theatre Company in association with The Disability Trust. She’s working with two actors with disabilities and a small team of able-bodied collaborators ...

Inclusive Education Program at the University of Sydney - Annual report
Centre for Disability Studies, University of Sydney, november 2013
The Inclusive Education Program (IEP) was developed to support people with intellectual disabilities to audit lectures at the University of Sydney and enjoy the experience of University life. They commit to attending University for up to two years and each semester they have the opportunity to select two units of study for auditing. By auditing it is meant that students are accepted into the classes by the lecturers without having to be enrolled in a degree course. As auditing students they are not required to submit work for assessment; however they work on an individual project that they present at the end of each semester ...

Miller's world record swim is ratified
Corey Martin, The Examiner (Launceston), 15th February 2014
South Esk (Tasmania) swimmer Aran Miller's 200-metre backstroke record was ratified by the Down Syndrome International Swimming Organisation yesterday ...

Weekend reading viewing: 22nd - 23rd February 2014

Revolutionary Love

Dave Hingsburger, Rolling Around in My Head, 14th February 2014

The place has been buzzing with anticipation for a couple weeks now.   It seems to me, that Valentine's day, is second only to Christmas as a holiday to be most joyously anticipated and celebrated around Vita. ... People with disabilities have more than a difficult history when it comes to matters of the heart, when it comes to love and relationships ...

The Pool

Sally Felkai, Down Syndrome Research Foundation (Vancouver), 18th February 2013
... So here it is. I am one of them. When my little duck 'A' was born, my main exposure to people with disabilities was from seeing them at community centres and pools with their attendants, hired or sometimes aging mothers whose little ducks would never leave the nest. My fearful mind immediately cast me into that role, my own body weakened from years of grief and neglect, supporting a child who would never swim or run or be free of needing me.

I laugh. That fearful vision seems as far away from reality now as it was looming and oppressive then ...

Happy - Epic Arts Cambodia recently produced this music video that will make you smile widely.  Our thanks to Ann Morrison for her permission to reprint her message to the DOWN-SYN email list,

'My son is 25 and has Down syndrome. His sister was recently hired by Epic Arts in Cambodia as an art teacher and she decided to take her brother with her for 6 months. They are having an amazing time and the experience is unparalleled for my son. Epic Arts provides art and dance experience for the disabled population. They recently produced a music video that is fantastic and features a few people who have down syndrome. I thought people on this forum would love to see it.'

You Tube link

My sibling with disabilities embarrasses me
Maureen Wallace, She Knows - Parenting, 11th February 2013
Children growing up with a sibling who has a disability may experience moments of embarrassment that are both natural and not necessarily related to the sibling's disability. But for those moments when emotions are tied to disability, veteran siblings share advice for parents to help prepare ...

Advocating for people with disabilities

Jennie Curtin, Blue Mountains Advocate, 29th January 2014
It was a career he “fell into”, in his own words, but working with and for people with a disability quickly became a way of life for Blackheath’s Bob Weaver. His nearly 40 years of service to the community, particularly in mental health and disability, were acknowledged with an OAM in the Australia Day honours ...

How to Talk to Normal People: A Guide for the Rest of Us
Rachel Cohen-Rottenberg, Disability and Representation, 28th January 2013
A lot of us don’t know how to approach normal people. It’s not our fault. We don’t have a lot of exposure to them. They’re not really suited for the kinds of work and leisure activities we enjoy, and they have enormous difficulty relating to other people. Interactions with them tend to be awkward.

I’ll be the first to admit that I’m guilty of not reaching out across the divide ...

People with learning disabilities need to be empowered to fight their cause

Tamsin Rutter, Guardian Professional, 20th February 2014

The learning disabled are often seen as service-users or receivers and rarely employed as equal partners in the solutions ...  a third of Britons believ(e) those with learning disabilities cannot live independently or take jobs ...

Would you be interested in test-driving a new website?

Northcott is seeking families of young children who have a disability to participate in the testing phase of a new website focussed on inclusion.

... The focus of All In! is to provide community members who interact with young children who have a disability, with a range of tips and ideas on how to include that child into their setting or activity.

... Testing of the site will take place strictly between Monday 24 February 2014 – Tuesday 25 February 2014. The site will not be in operation before or after these dates.

You can participate from home - find out what you will need to do, and how to provide the feedback required, here.

Library Thursday: 20th February 2014

New  library title

Moving Out: A Family Guide to Residential Planning for Adults with Disabilities
by Dafna Krouk-Gordon and Barbara D. Jackins, Woodbine House.
This book explores a variety of models and many of the issues concerning families of people with disability living outside the family home.
Chapters include

Getting Ready and Letting Go
Residential Options, Finances
Ownership
Staff and Personnel
Permanency and Longevity

The book also includes checklists.
Enquiries: Please contact Jo in the library on 9841 4410 or email: library@dsansw.org.au


New publication

GOOD FOOD, GOOD LIVING - nutrition for People with Disabilities Living in Supported Accommodation 

This new resource is due to be launched in Penrith next week, by Greystanes Disability Services.

Prof Matthew Janicki: Symposium on dementia and Trevor Parmenter Annual Lecture

Professor Matthew Janicki will be visiting Sydney during April. Professor Janicki is a world renowned researcher on ageing and intellectual disability. He will be speaking at two public events, which Down Syndrome NSW members are encouraged to attend.

Dementia and Disability: the facts, strategies and implications
A symposium hosted by Alzheimer’s Australia NSW, the Centre for Disability Studies at the University of Sydney and the University of New England, to be held at NSW Parliament House, Sydney

• Flyer with details of all speakers, and registration

Miriam Philomena from Down Syndrome NSW will be participating as a panellist discussing "Building better practice approaches" in the afternoon session.

Monday 7 April
9.30am - 4pm
Cost: $99


Trevor Parmenter Annual Lecture
Tuesday 8 April
6pm - 8pm
Details of venue and bookings will be available shortly from the  Centre for Disability Studies 

Volunteering opportunities

Are you interested in the justice system and people with an intellectual disability?

The Intellectual Disability Rights Service (IDRS) is seeking volunteers to support people with intellectual disability who have to attend court. Training is provided and volunteers are needed in Sydney, the Central Coast and the Hunter. 

• Find out more here. 

Source: NSW CID E-News, February 2014