Address details

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

Friday, 28 February 2014

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

Thursday, 27 February 2014

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

Stand up for those with Down syndrome
Regina Brett,, 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 ...

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 if you need assistance.

Tuesday, 25 February 2014

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

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

Centre for Disability Studies (University of Sydney)
Tuesday 8th April 2014 - Sydney

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

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.

Monday, 24 February 2014

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 ...

Friday, 21 February 2014

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.

Thursday, 20 February 2014

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
Staff and Personnel
Permanency and Longevity
The book also includes checklists.
Enquiries: Please contact Jo in the library on 9841 4410 or email:

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 

Wednesday, 19 February 2014

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
Source: NSW CID E-News, February 2014

News and commentary on the NDIS (16)

The National Disability Insurance Agency presents the third NDIS Webinar:
A Strong Voice: Self-Advocacy
‘A Strong Voice’ will focus on self-advocacy, and how people with disability take control of their own lives to speak for themselves with greater confidence. Our panel of guests will discuss ways that self-advocacy has helped them to make informed choices about their reasonable and necessary supports and achieve their personal goals as valued, contributing and included members of the community. Our guests will answer your questions about how to build self-advocacy into your own life.
Thursday 27 February 2014 at 12:00pm (AEST)

Disability care goes straight to the heart, but needs a businesslike touch
Liz Kelly, The Age, 16th February 2014
Tangible dividends should be expected from the NDIS.
... The NDIS is a once-in-a-generation economic and social reform that could mean many people have access to the same support I received. Parents I have spoken to over the years have said that the NDIS is a crucial step in ensuring that the person they are caring for in an unpaid capacity is supported appropriately - so that they then can obtain paid work. People with disabilities also have the capacity to seek employment if given the right support ...

NDIS trials to cost further $400m
Dan Harrison, Sydney Morning Herald, 14th February 2014
Federal Labor's rush to launch the National Disability Insurance Scheme before last year's election contributed to it underestimating the cost of trials by almost $400 million, the Coalition says. The minister responsible for the scheme, Mitch Fifield, told Parliament on Thursday that trials in NSW, Victoria, Tasmania and South Australia were likely to cost $392 million more than expected because of ''errors'' in federal-state agreements negotiated by the Gillard government ...

Share your NDIS experienceEvery Australian Counts is keen to track the real life experiences of participants in launch sites.
Are you already an NDIS participant? Do you have a family member or friend who is part of a trial site? We want to hear from you! We're looking for people to share their NDIS experience. 
NDIS quarterly report - Senator Mitch Fifield
Transcript, Senate Questions Without Notice, 13th February 2014
... The Coalition is committed to delivering the NDIS in full. The priority of the Government is to ensure the scheme is as effective and efficient as it can be. And that’s to ensure that the support gets to the people who need it. We are determined to ensure that the NDIS is here to stay, and that its foundations are strong and financially sustainable ...

Do-it-yourself care plans and the NDIS
Life Matters (ABC Radio National), 5th February 2014
Under the proposed National Disability Insurance Scheme, people with disabilities and their carers will be given an individual funding package allowing them to choose services and manage their care. This will require new skills to make a successful transition from the old to the new system.  
Audio file.

My Access Checker
National Disability Insurance Scheme, February 2014
My Access Checker is a tool to help people with permanent and significant disability understand whether they may be able to access assistance from the NDIS or the My Way initiative in WA during the launch period ... Anyone can complete My Access Checker. Even if you do not live in one of the NDIS launch sites for 2013 or 2014, or one of the My Way initiative locations in Western Australia (2014 or 2015), you can still complete My Access Checker to find out whether you could meet the access requirements. It should take between 10 and 20 minutes to complete ...

Tuesday, 18 February 2014

Down Syndrome NSW workshop for primary school teachers and school personnel

Down Syndrome NSW invites you to join Judy Davidson, Parent Support Manager, Down Syndrome NSW, who has a background in education, as she discusses the latest research and information about students with Down syndrome, including:
  • Factors that impact on a student’s learning, communication and behaviour - outlining the
  • developmental profile
  • Best practice strategies to promote success in the school environment - examples from practice
  • The importance of using visual tools to support effective learning, communication and behaviour
  • The effect of short term auditory memory impairment - management methodologies
  • Overview of a range of excellent resources available to you and your school

Thursday 13th March 2014
9:30 am — 3:00 pm

Rosehill Bowling Club
James Ruse Drive 

$165 per person (non member), or $110 per person (member)
Morning tea and lunch provided
Prior registration is  essential for catering. 
Please register by Wednesday  5th March
Minimum numbers will apply.

Playing to Their Strengths seminars will be held in regional NSW throughout March.
Parents of school age children may wish to bring these seminars to the attention of their school.

For further information please contact Catherine Pedler: or 9841 4403

Playing to Their Strengths 
Friday 7th March 2014
Presented by Judy Davidson (DS NSW)
Hosted by ACT Down Syndrome Association

Bookings: by 26 February
Members of Down Syndrome NSW who live within 
easy travelling distance of Canberra may wish to attend.

Please note: You are able to join DSNSW as a member prior to the workshop and enjoy significant benefits and savings. Schools wishing to join do so as a Group / Organisational member ($132), or teachers joining as individuals do so as a professional member ($30).

Research news #3 for 2014: new online parent survey, University of Newcastle

Are you a parent or caregiver to a child with Down syndrome?

Following on from an earlier study, the University of Newcastle would like to further understand how your child has impacted your life and how you have coped. You can do this study even if you participated in the Disclosure study in 2012/2013.

To read more, or complete the survey click here.

Monday, 17 February 2014

Good health: a good story about fitness

The Adult Down Syndrome Clinic, located in suburban Chicago, has been providing health care for adults (and now teens) with Down syndrome for more than 22 years, and has seen more than 5,000 patients.  That's a lot of very good quality experience, and their willingness to share what they learn in their own clinic and from their excellent contacts around the world is very much appreciated.  It is good to hear, via their blog and/or Facebook page, about some of the changes in the health of people with Down syndrome they have tracked over the years.

Congratulations - Fitness Success Story
Adult Down Syndrome Clinic, 16th February 2014
We are hearing more fitness success stories. Most often the successful efforts include a social component, an exercise portion, and a food preparation and nutrition component. Here is one such example:

Lizzie and Peggy are being recognized by Lombard Health Heroes for their participation in the Western DuPage Special Recreation Association (WDSRA) Lose to Live Challenge ...

read on here, on the Adult Down Syndrome Clinic blog.

Early Intervention places available: southern Sydney suburbs

Learning Links has positions available in their Early Intervention Groups for babies and toddlers.

The groups are staffed by a Speech Pathologist, Physiotherapist, Occupational Therapist, Early Special Educator and a Family Counselor.

Groups run weekly in Oatley for St George families and Menai for Sutherland Shire families.

Learning links works in partnership with families to develop a program especially for your baby. If you would like to enrol in one of the groups or just have a question, please contact Learning Links directly:

Friday, 14 February 2014

Weekend reading and viewing: 15th - 16th February 2014

When my daughter was diagnosed
George Estreich, Salon, 12th February 2014
I was shaken to find Laura had Down syndrome. But the real problem was my limited vision of what happiness could be ... I didn’t know how to think about her. I remember saying I wanted her to be Laura, my daughter, not a medical case, not an extra chromosome ...
  • George Estreich's memoir, The Shape of the Eye, won the 2012 Oregon Book Award for Creative Nonfiction - it is available for loan to members from the Down Syndrome NSW library
I was born different. I see the world through my own lens. The camera allows me to show you the world through my eyes. You might just like the view.

Square Pegs, Round Holes and the Infinite Possibilities of Loving Your Child
Kelle Hampton, Enjoying the Small Things, 10th February 2014
... For us, it’s difficult defining what behaviors of Nella’s are attributed to Down syndrome and what’s just manifestations of her own personality and growing pains. How much do we push her and how much do we let her be who she is? How do we balance high expectations with accommodations? As we made some decisions for her last week and talked about how to continue to nurture her toward more independence, I felt the frustration and the sadness that comes with this additional stuff. More roadblocks, more work, more thinking outside the box, more taming emotions because the sad demons love to use these decisions as an opportunity to lurk and make you feel bad ...

My Son's Disability Defines Him (and why I'm okay with that)
Mary Evelyn, What Do You Do, Dear? 11th February 2014
Happens to have-- a purposeful afterthought. We use these words to create distance between our children's inner selves and their outward physical state. We want to separate the people we love from situations that are less than perfect. We don't want their bodies to define them.

But the truth is, my son doesn't "happen to have" a disability. He just plain has one ..

I Support Unicorn Farts
Jisun Lee, Kimchi Latkes, 12th february 2014
... since when are the parents of a typical child accused of being in denial when they dare to hope and dream big? I’m imagining a parent making some kind of comment about typical little Bobby’s bright future. Does anyone blink an eye? No. Because that is what parents do ...

Attitude slowly changing toward hiring people with developmental disabilities
Kim Pemberton, Vancouver Sun, 4th February 2014Being inclusive is good for the bottom line, Tim Horton store owner says ...

Young Heart Survivor Proves Miracles Happen
Melisa Brunner, WIBW (Kansas), 7th February, 2014
The fact that two-and-a-half-year-old Mason Busey is laughing, running and mugging for the nearest camera is nothing short of a miracle.
When she was 20 weeks along, Mason's mother, Meagan, went in for what she thought was a routine ultrasound ... (It showed that) Mason had a fluid buildup on his neck called a cystic hygroma, which could be life-threatening. In addition, he had atrioventricular septal defect. Instead of being divided by chambers and valves, his heart had not developed.

Drama, Dance and Puppetry classes

Lots of leisure and creative activities are starting up now after a break over the summer.  Here are some who have notified us of their interest in enrolling people with down syndrome and other disabilities:


Once Upon A Time Theatre is running drama classes in Chatswood, for people identifying as having a disability, physical or intellectual, who are interested in developing or extending their performance skills in a safe, fun and friendly atmosphere.

A range of skills including voice, movement, improvisation and theatre making will be explored. There will be performance opportunities.

Classes are facilitated by experienced and qualified theatre professionals.

Contact: Creative Director: Kylie Harris, on 0435 940 029 or


Special needs dance classes are being conducted by DJAZZEX Dance and Pilates at their studio in Brookvale.

Contact: Yvette Sturrock on 9949 1486 or via the DJAZZEX Facebook page


Mamre Puppetry and Performance Group is a mixed ability, inclusive skill development activity, held at Orchard Hills. Participants will gain skills in puppetry performance, puppet making, working in a team and increased confidence in self-expression and communication. Bookings are essential.

Contact: 9670 5321

Thursday, 13 February 2014

NSW Companion Card - new website

The NSW Companion Card has launched a new website, with a new look, more information about t, stories about using the Companion Card, an updated list of 2,300+ affiliates, and application forms to download.

And Gabrielle, who has Down syndrome, stars in the introductory video - she describes getting out and about with the assistance of a Companion Card as 'awesome', and helping her to live her life the way she wants it.
It is unfair and discriminatory for people with significant disability, who cannot manage on their own away from home, to have to pay twice whenever they go somewhere — once for themselves, and once for their companion (their partner, friend, carer or family member). 
A person with disability has the same right to participate in the community as a person with no disability. This right is protected under section 4a of the NSW Anti-Discrimination Act 1977 and section 8 of the Commonwealth’s Disability Discrimination Act 1992. 
That’s why the NSW Government started the Companion Card scheme in 2009.
When the Companion Card holder buys a ticket for themselves at selected venues and facilities around NSW, their companion will get free entry.         
...  About Companion Card
If you haven't looked into the Companion Card yet, now is a good time to check out what's available, and apply.  There is a Companion Card scheme in all States.

Developing the NSW Carers strategy - what do you need to be included?

The NSW Carers Strategy will shape the way NSW supports carers between 2014 and 2019. Have your say on the strategy and let the government know what support you need.

Further information about the areas to be addresses, and questions about the roles of carers are available from the NSW Government's Have Your Say website, along with a link to the online survey:
Creating innovative solutions with carers
The NSW Government wants your help to develop strategies for the state’s 850,000 carers. Carers are family members, friends, housemates and neighbours who provide ongoing, unpaid support to someone who needs it because of disability, chronic illness, mental illness and frail age.

Carers and the broader community are vital to the development of the NSW Carers Strategy so please complete the consultation survey before leaving this site. The survey is quick and easy to complete. Simply tell us which ideas you think are the most important for supporting carers in each area of their life.

The proposed ideas have been developed through a collaborative process with carers, government and community all working together to develop innovative solutions. The Frequently Asked Questions and Information Paper have more information about the consultation and development of the NSW Carers Strategy.

Please share this page with your friends and family and encourage them to get involved.

Wednesday, 12 February 2014

Arts news

Call out for actors with a disability
Ever After Theatre (based in Rozelle) is seeking 2 actors to take up the opportunity of joining us to present a new Australian Theatre Work called Social Network Stories which will be performed at Carriageworks in early May. 
Ever After Theatre is an emerging ensemble of actors who happen to have disability. You should have some experience in performing and be excited by the idea of being involved in a production with a unique emerging Australian Theatre Company. For more information about the show in May please visit the Carriageworks Program 
For more information about joining this project contact Sue: 9555 8988 extension 2 or
Source: Accessible Arts, 11th February 2014 

Dance residency - expressions of interest for July 2014
Expressions of Interest are now being sought from Australian and international dance artists wishing to attend the second annual Beyond Technique Residency facilitated by Philip Channells / Dance Integrated Australia. This week-long disability-inclusive dance residency will take place at the Boyd Education Centre from Monday 30 June – Friday 4 July 2014.
The Corner Dance Lab 2014
The inaugural 'The Corner Dance Lab' held in January 2014 was a 6-day program of workshops, master classes and choreographic labs led by some of Australia’s leading dance artists for and with dancers with and without disabilities. 
The week was guided by event co-founders, Philip Channells (Dance Integrated Australia) and Gavin Webber (Animal Farm Collective) who on the closing night’s showing hustled for some of the spotlight of their own as joint MC’s wearing matching skeleton-print outfits. 
42 dancers took up the opportunity, eager to embed themselves deeply into diverse creative practices including: contact improvisation, qigong, release and recover, impulsive actions, dance theatre and choreographic investigations using contemporary dance techniques ... read more here and more pictures here

The Soft Knife - Casula Powerhouse
Emily Crockford and Megan Pelham, two artists with Down syndrome, will have works showing in the exhibition The Soft Knife, art the Casula Powerhouse (south western Sydney), 5 April - 18 May 2014

People with Down syndrome in the media

These two stories from the Illawarra Mercury are illustrated with fabulous photos:
Wave FM host's beautiful blessing with Lulu 
Lisa Wachsmith, Illawarra Mercury, 7th February 2014
Wave FM breakfast host Jade Papesch is glad that her baby, Lulu, was not diagnosed with Down syndrome until she was eight weeks old."It's quite unusual that it's not picked up in utero or at birth," said Jade, who is on maternity leave."We didn't know for eight weeks, so we got to love Lulu for Lulu - the diagnosis didn't get in the way. I feel quite blessed by that."
Family's life-changing move to the Illawarra 
Lisa Wachsmith, Illawarra Mercury, 9th February 2014
When Julie Gartshore googled the best place to live with a child with Down syndrome - the Illawarra was the frontrunner. So Julie and husband Glen moved their brood - Natalie, 15; Taylah, 14 and Max, 10 - from Mount Isa to Woonona 12 months ago and they haven’t looked back since ... 
... as is this one from alt media:

Swimming for special needs
Michael Koziol, alt media, 6th February 2014
Matilda Thompson, 12, loves to swim, particularly at her favourite beach, Clovelly.
“I like to make some waves,” she says. Her favourite style is breaststroke. Matilda, who has Down syndrome, has taken swimming lessons at the Ian Thorpe Aquatic Centre for two years ...

The journalist's use of terms such as 'sufferer' are addressed in the comments  in response to this article about an episode of a popular  British TV series:
'Call the Midwife's' most controversial storyline yet as disabled boy and girl fall in love and have a baby
Emma Pryer, Daily Mirror (UK), 9th February 2014
... Sarah Gordy and Colin Young say their roles in the hit series have left them grateful they were not born in post-war Britain ... “It made me feel such anger when I read the script,” says Sarah, who has Down' Syndrome. “Back then people did not want to admit they had a disabled person in the family. They would say it was ‘bad blood’ ...

With New Film, Boy With Down Syndrome Gets Taste Of Stardom
Hunter Ingram, Wilmington Star-News, 11th February 2014
On a dewy July morning last summer, Amy Wright looked on with mild concern as her son, Beau, ran across a hilly field in the Appalachian mountains outside Beckley, W.Va. The pair, along with Amy’s husband, Ben, were among many on the hillside as cameras rolled on Beau’s first scene in the independent film “Little Accidents.” ...

Black History Month
Chris Burke, NDSS, February 2014
... Rosa Parks, Martin Luther King, Jr. and Nelson Mandela had to deal with white people’s prejudice simply because they were different. Their goal was to advocate for other people’s rights. They fought for justice, truly the American way. Now self-advocates with Down syndrome fight for justice. It’s all about leadership ...

Tuesday, 11 February 2014

Keep the music playing ...

"They all love music!" ... a stereotype, a cliche, likely to set the teeth of many parents of children with Down syndrome on edge. It often comes across as a well meant platitude, ignoring that just about everyone, no matter how many chromosomes they have, or their age, enjoys music of some kind. Perhaps most people with Down syndrome are simply less inhibited than some of us about their enjoyment.

However, Music and Memory, brought to our attention by the good people at The Successful Ageing in Intellectual Disability Study (UNSW) via their Facebook page, might be of great interest to those caring for older people with Down syndrome and Alzheimer's disease. We know that Alzheimer's can occur earlier in people with Down syndrome than amongst the general population.  A key aspect of  the success of Music and Memory is that the music chosen for each person's iPod needs to be carefully selected to match the music they have responded to in their younger years. A good reason to take note, and keep a record.

Music and Memory is not specifically designed for, nor based upon the needs of people with Down syndrome, but those with Alzheimer's disease - sometimes at quite an advanced stage.
Do take the time to scroll down to the 'Alive Inside' 6 minute video excerpt, and watch all the way through, even if it is not a current problem for your loved one with Down syndrome - what you will see is remarkable.

Recent additions to our 'Events 2014' page: World Down Syndrome Day

World Down Syndrome Day
“Health and Wellbeing - Access and Equality for All”Down Syndrome International
21st March 2014
World wide

T 4321
Down Syndrome Australia
March 2014
Australia wide

321 e-Conference
A virtual conference planned to connect members of the Down syndrome community to celebrate the World Down Syndrome Day
21 - 23 March 2014

Monday, 10 February 2014

Reminder - starting school photos welcome

How are the kids settling in to the new school year? Did you take some photos of that first day, or during the first week?

If you or your child would care to share a photo from the start of the 2014 school year, we would like to put together an 'off to school in 2014' gallery, of those returning to school, or starting the adventure of school for the very first time, moving on to primary school form infants, to high school from primary, or starting your last year of schooling.

It will be a way to celebrate this year's new beginnings, and will encourage those who are already thinking about where they will be heading next year.

Please email any contributions to


Research news #2 for 2014: UNE study on rural carers

Study on the impact of informal caregiving on the health and wellbeing of rural carers

Professor Rafat Hussain (principal investigator), Dr Stuart Wark and 
Ms Peta Ryan from the School of Rural Medicine, UNE.

Researchers at the University of New England, in Armidale (NSW), are conducting a study on the impact of informal caregiving on the health and wellbeing of carers in rural and regional areas.

Participation is invited in an online survey.

Some preliminary results shared by researcher Peta Ryan:
  • The common conditions that we have found people caring for include: Autism, Down Syndrome, Cancer, Dementia, ageing, parkinsons, schizophrenia, bipolar, ADD and Alzheimer's.
  • The carers we have so far have age ranges from 20-82 years old with an average of 49 years old. 
  • The majority have been female (86%)
  • About half of the carers work.
  • And over 80% are the primary caregiver living with the person they provide car for.
  • Of the people that are aware of carer support groups most (>60%) are not members (distance and time are the most common reasons why not).
  • Over 30% of carers say their health is somewhat worse than one year ago. 
  • Over 60% of carers so far have accomplished less than they would have liked in the last month.
  • Only 8% of carers reported having no bodily pain in the last four weeks although 24% of carers did not have pain that interfered with their normal work (household duties, occupation)
  • Most respondents felt depressed a little of the time (38%) while 17% felt depressed none of the time.

Friday, 7 February 2014

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

Putting Myself in Her Shoes
Christie Hoos, Down Syndrome research Foundation (Vancouver), 4th February 2014
... “itstimetogoweregonnabelateitoldyoutogositonthepottyareyoueven
listeningtomeCOMEON…” ...

Video games, Down's syndrome and my brother – a personal story
Edwin Evans-Thirlwell, The Guardian (online), 1st February 2014
Playing with my brother is one of many ways he reveals himself not as a 'disabled' person – but simply as his own person ...

I'm Down with You ... is a photography book and documentary film that tells a story, visually and in words, about some incredible people with an extra chromosome, of all ages.  You can now download it as a free iBook via iTunes ( to be viewed on iOS devices such as iPad and iPhone)

What I Saw
Autistic Chick, 23rd January 2014
... They didn't see someone asking to be taken for a walk. They didn't see him begging to have some space. They saw an escape attempt. A noncompliant escape attempt. A student trying to outsmart the teachers, to get his way ...

Dead is not better than disabled
Dr George Taleporos, Ramp Up, 31st January 2014
With the current spotlight on street violence and warnings about the potential consequence of acquired disability, Dr George Taleporos is concerned about the way disability is being portrayed by the media as a fate worse than death ...

New report shows big gaps in justice system for people with disabilities
El Gibbs, Ramp Up, 7th February 2014
El Gibbs reports on the Human Rights Commission's latest findings on the problems people with disability face when dealing with Australia's criminal justice system.

... The National Council on Intellectual Disability detailed the myriad ways that people with an intellectual disability are discriminated against within the justice system. For example, a lawyer may not understand that a person requires more time to process a question, so they "will ask another question thinking that person has not understood/ doesn't know/ doesn't want to answer the questions. For the 'client', they then do not know which question to answer first, and will become overwhelmed in situations when a questioner keeps firing one question after another with the common result that they are unable to answer any question." ...

Australian apps related to Auslan and Key Word sign

Aileen Ryan is publishing a very useful series of blog posts at Key Word Signing and Proloquo2Go on sign language  (Auslan and Key Word Sign) Australian apps available on iTunes for iPod, iPad
and iPhone. The first in the series was posted on 27th January, the second on 31st January, with more to come.

AIleen's experience in using and teaching Key Word Sign with people with developmental disabilities and their families, and her interest in technology has led to her developing particular expertise that is invaluable to families.

Elsewhere on her blog, Aileen deals with matters related to how her daughter, Elysha (a young woman who has Down syndrome and hearing impairment) uses Proloquo2go, and Auslan to communicate.  Through her business, Hands Can Talk, Aileen teaches Key Word Sign and the use of Proloquo2Go.

Thursday, 6 February 2014

Library Thursday: 6th February 2014

New on our shelves
A speech-language pathologist shows parents and caregivers that they don't need to be experts to help kids communicate better! Talking Is Hard for Me! follows a child and his family as they challenge, prompt, and support his/her communication efforts through:
  • natural need creation (change the environment to compel the child to ask for help)
  • sign language & AAC
  • communication turn-taking
  • choices
  • sentence simplification
  • music
  • reading
Use the kid-friendly illustrations and supportive story to empathize with children’s struggles to talk, and the accompanying strategies to improve communication and ease frustration. Share it with peers, daycare providers, and teachers. Makes a great tool to reinforce therapy sessions. (Publisher)

Please contact Jo in the library on 9841 4410 or email:

I'm Down with You - now a free iBook
I'm Down with You is a photography book and documentary film that tells a story, visually and in words, about some incredible people with an extra chromosome, of all ages.  The print edition was first released in 2010. 

You can now download it as a free iBook via iTunes.

Wednesday, 5 February 2014

'Equal before the law: towards disability justice strategies', report released today

Commission calls for all states and territories to introduce disability justice strategy
Australian Human Rights Commission, 5th February 2014
The Australian Human Rights Commission will today report on its inquiry into the treatment of people with disabilities in the criminal justice system. It finds that such people are not equally treated. 
The report Equal before the law: Towards disability justice strategies is the culmination of extensive consultations held last year with victims, perpetrators, witnesses, disability advocates, policy makers and criminal justice workers. 
The Commission found that equality before the law is a wide-spread problem for people with disabilities, and in some cases, the injustice experienced has been severe ...
Read the complete statement from the HRC and download the report here.

Good health: women's health

When reading Marie’s file I noted that, even though she was 55 years old, she had never had a mammogram. I wondered why. We have a new study showing that the reason why is simple: These important procedures are not always done when a woman has a disability. In this article, we’re going to tell you what the research shows regarding health care for women with disabilities, and propose some suggestions on what we can do about it.

... We looked at the health of over 20,000 women with developmental disabilities in Ontario, and compared these women to men with similar disabilities, and to women without disabilities ...

Tuesday, 4 February 2014

Tribute to Moira Pieterse

The Sydney Morning Herald has today published a tribute to early childhood intervention pioneer, Moira Pieterse, who died in November 2013, written by her colleagues and former students, Robin Treloar and Sue Cairns.

People with Down syndrome in the media

Yoga works wonders for keen sportsman
Jessica Willard, Cessnock Advertiser, 29th January 2013
Jason Rasmussen has tried his hand at many forms of exercise including gymnastics, soccer, swimming and even horse riding. But for the past few months, the 24-year-old has been attending weekly yoga classes in Cessnock and the results speak for themselves ...

Fifteen years of service
Down Syndrome NSW e-Update, February 2014 issue #1

Congratulations to Ruth Cromer, vice-president of the Up! Club, who was recognised for her outstanding achievement at work. Ruth has been continuously employed by St George Bank for fifteen years, working at their Head Office in Kogarah. Ruth is photographed receiving her certificate from her Manager and Supervisor along with a celebratory cake.
Down Side Up, 24th June 2013
... Sarah is a beautiful, talented, humorous actor, (you may have seen her in Upstairs Downstairs or Holby City), a charity ambassador, a public speaker and a campaigner. Sarah recently agreed to let Family Downs Side Up interview her ...
The interview is accompanied by some beautiful photographs of Sarah.

A ‘Glee’-ful visitor speaks at Eastern
Kailee Dunn, Easterner (the student run newspaper of Eastern Washington University), 30th January 2014
Lauren Potter may seem different, but she is just another 23-year-old with dreams and aspirations, which came true when she received the call of a lifetime four years ago.

Potter, who has Down syndrome, plays sprightly and vivacious Becky Johnson from the TV show “Glee.”

Eagle Entertainment hosted Potter to speak to students about bullying in Showalter Auditorium on Jan. 22. Along with witty one-liners and playful banter, she stole the hearts of the crowd when she shared her amazing journey through life this far.

Research news and commentary #1 for 2014

New Research Publications on Sleep and Cognition
Down Syndrome Research and Treatment Foundation, Newsflash: January 2014
This news itemprovides links to three new research reports on links between sleep and cognitive development in children and older people with Down syndrome.
“These new studies represent a deepening understanding of the correlation between levels of cognitive function and sleep disruption, including sleep apnea, in people with Down syndrome,” says Dr. Michael Harpold, DSRTF’s Chief Scientific Officer and Chair, Scientific Advisory Board, “as well as offering greater insight into the cognitive decline associated with Alzheimer’s disease in adults with Ds as they age.” With DSRTF’s continuing support of research exploring the mechanistic relationships between cognition and sleep dysfunction, Dr. Harpold is optimistic about the development of evidence-based therapeutic strategies to improve cognitive function through addressing sleep dysfunction.
FuseWorks Media,, 24th January 2014
A University of Canterbury (UC) study is using video modelling and video self-modelling to help teach job skills to prospective employees with Down syndrome ...

Introducing the Centre for Applied Disability Research (CADR)
The Centre for Applied Disability Research (CADR) is a new applied disability research centre based in the sector and seed-funded by NSW Government. It has been created to improve the wellbeing of Australians with disability by gathering insights, building understanding and sharing knowledge. 
CADR will undertake an integrated series of policy, research and sector development initiatives that together deliver a State of the Sector assessment. Additionally, CADR aims to undertake commission, monitor and disseminate the key findings of recent disability-focused research and evaluation from throughout Australia and internationally. 
CADR believes that for people with disability to exercise their rights, they need real choices. This requires an efficient and effective ‘market’ and a sustainable sector to enable client choice and control.   (CADR home page)