Address details

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

Wednesday, 30 September 2015

New dimensions to an ongoing debate/conversation

Why I didn't want to test for Down syndrome before birth
Kasey Edwards, Daily Life, 29th September 2015
... Even when I told the doctor performing my 12-week ultrasound that I didn't want to know the risk of Down Syndrome, he told me the results anyway.

It's standard practice for doctors to withhold other information (at the parents' request), such as the baby's gender, so why - when it comes to information about disability - was my decision not respected? ...

Kari Wagner-Peck, A Typical Son, 24th August 2015
... Am I comfortable with the fact that 60 – 90% of women chose to abort a fetus found to have Down syndrome? No, I’m not. In fact, It angers me. That anger however is not directed at the woman having the abortion. It is at our medical community in its supreme ignorance insisting on relaying antiquated information about Down syndrome to women at what is likely the most vulnerable time in their life.

I place blame as well on our insistence that disability be seen as a profound disadvantage in a society that places an inordinate emphasis on normal. The greatest disability our son faces is what people think of him not his Down syndrome.

The New York Times interviewed two primary sources for coverage of this legislation: Right to life groups and pro-choice organizations. Both responded proforma meaning as expected.

My alliance is obviously with the pro-choice contingent but I was disappointed with their advocates making no mention of people with Down syndrome. They only spoke about ‘Down syndrome’ as a potential cause for concern for expectant mothers ...

... The Times reported “the national and local Down syndrome associations have not taken a position on the bill”. How is that possible? ...

Don't politicize my son over Down syndrome
David Perry, How Did We Get Into This Mess? 24th August 2015
... All of this makes disability-selective abortion possible for Down syndrome in the way it currently isn't for other conditions. But technology is racing forward, and we need to figure out how to talk about these issues. The Ohio legislation's blanket ban isn't going to help at all, but even if it's enforced somehow, it could just lead women to lie about the reasons they aborted, or make Down syndrome code for poverty, when only poor people are forced to give birth after a diagnosis ...

Long lives

Image: Martha Perske
In addition to frequent questions about life expectancy for people with Down syndrome, we are asked from time to time whether a particular person with Down syndrome might be the oldest on record. It is always interesting to hear of another long life, such as this tribute to Gwendoline Heath, who died recently in the UK, aged 76:

Tributes to 'wonderful' Gwendoline
The York Press, 25th September 2015
The “wonderful woman” was described by carers as full of mischief and humour, and was very popular among family and friends until her death from pneumonia on September 16.

Her niece Janet Baker, the daughter of Gwendoline’s sister Murial, said: “She was the most loving, caring, aunt that anybody could wish for.

“Despite all of the things life threw at her she always had a lovely smile and a hug for everyone ...

As life expectancy increases (at the same time as birth incidence decreases), so does the imperative for policy development and planning to meet the needs of more older people with Down syndrome, for many years to come.

Some earlier articles about very old people with Down syndrome:

Tuesday, 29 September 2015

Research news and commentary #7 for 2015

Lines of Enquiry, Edition 10: August 2015
Centre for Applied Research in Disability newsletter

New study into ageing society with intellectual disabilities
University of New England, 28th August 2015
People with disabilities are living longer than before and increasingly reaching an age where they may start needing aged care as well as disability care. This creates a conundrum as current services available in Australia tend to cater for people with disabilities or our ageing population, but not both.

Researchers at the University of New England, in partnership with support agencies such as the Endeavour Foundation, The Ascent Group, Ability Options, and Uniting Care Ageing are researching how to better meet the needs of people who are ageing, both with disabilities and without disabilities ...

Could Down Syndrome Hold the Key to an Alzheimer's Cure?
NewsMax Health, 18th September 2015
... In a new study, published in the September issue of Frontiers in Behavioral Neuroscience, University of California-San Diego scientists confirmed that people with Alzheimer’s and Down syndrome have higher levels of the protein beta amyloid in their brains, which causes cognitive disabilities.

By studying how soon protein plaques develop, where in the brain they are located, and the effects of the plaques on cognition in people with Down syndrome, scientists could gain a better understanding of Alzheimer’s that could pave the way for new therapeutic treatments, the UCSD researchers said ...

Rafii, Michael, et al, The Down syndrome biomarker initiative (DSBI) pilot: proof of concept for deep phenotyping of Alzheimer’s disease biomarkers in down syndrome, Front. Behav. Neurosci., 14 September 2015
Defeat Dementia in Down's Syndrome
Down's Syndrome Association (UK), blog
On Sunday 26 July (2015), a team of researchers from Cambridge University came to the Langdon Down Centre to talk about their research – Defeat Dementia in Down’s Syndrome.
They have a number of really exciting studies taking place that they wanted to share. Sally, Maddie, Liam, Francesco, Alexandra and Tony were available to talk to our visitors about the different studies, and they had posters and demonstrations of their work ...

Research into individualised support
The University of Sydney together with Curtin and Deakin universities are evaluating the quality and outcomes of people with intellectual disabilities who live in their own home with individualised support. If you are interested in participation, contact Friederike Gadow on 02 9036 3611 or by email
Click here
to find out more. Click here for the easy read version.

Research into people with intellectual disability and their experiences of victimisation.
Ryan Thorneycroft,  a PhD candidate at the University of Western Sydney is conducting research into people with intellectual disability and their experiences of victimisation. To find out more click here, or email

Webinars on the NDIS roll out in NSW and Victoria: this week


The NDIA will be hosting two webinars on the NDIS roll out. One for NSW and one for Victoria. Details are as follows:

Thursday 1 October 2015
  • NSW 10am - 11am AEST
  • VIC 1:00pm – 2:00pm AEST
These sessions will be focussed on providing information to people living in areas where the Scheme will soon be available, (as detailed in the bilateral agreements).

We are here to answer your questions on how you might access the Scheme and what you can do to prepare.

Hear from our panel as they discuss their experiences of the NDIS trial to date and what you can expect as the Scheme is delivered across NSW and Victoria.

Join the discussion by sending your questions before or during the webinar.

Submit a question on the topic using #NDISwebinar on Twitter, find us on Facebook or email

Monday, 28 September 2015

Survey: The way people with disability are represented in Australian newspapers

Via People With Disability Australia:

Survey: The way people with disability are represented in Australian newspapers
You are invited to take part in a survey about the way people with disability are represented in Australian newspapers. 
The online survey is being carried out by University of Wollongong PhD student Shawn Burns. 
The survey is anonymous. There is also an opportunity to take part in an interview with Mr Burns, if you choose. 
It takes about 15 minutes to complete the survey, and we encourage you to take part because we think PWD should be fairly and accurately represented in the news media. 
Follow this link to take part in the survey.


19-year old artist wins top ASOC award
Helen Musa, City News, 24th September 2015
A 19-year-old artist from Sydney has won the ASOC Best in Show award, it was announced last night at the opening of the Artists’ Society of Canberra spring exhibition, the highlight in its calendar year ...

Fraser won an additional award in the ASOC exhibition, with a different painting, Tides Alight, for the Best Abstract category. Another of Fraser's art works, Harmony, was selected recently by Year 12 students at Cranbrook School (where he is a former student), as their farewell presentation to the school.

Positive Role Model Award for Disability: Oliver Hellowell, photographer
(UK) National Diversity Awards, September 2015
Visit Oliver Hellowell's Facebook posts around 17th/20th Sept for photos of Awards night.

Congratulations to both of you.

Saturday, 26 September 2015

Pictures from the road: Scrapheap Adventure 2015

The Scrappers are posting photos on their Facebook throughout the weekend. It looks like a lot of fun. Here is a sample:

Junee, Friday lunchtime - where they emptied the bakery of pies, 
and smiles were seen everywhere. 170 km to Urana
Impressive shots, at the Soldiers Memorial Hall, Saturday ...
... of a very impressive group. Photos: Laurie Mason.
  • On Instagram, search for #scrapheapadventureride and #scrapheapadventureride2015

Friday, 25 September 2015

Weekend reading and viewing: 26th - 27th September 2015

Fill the Bookends with Beauty and Carry a Big Sword
Kelle Hampton, Enjoying the Small Stuff, 22nd September 2015
This is a small incident, and yes there’s a battlefield out there. But this is how we’ll do it: Fill the bookends with beauty so that those deep sea moments in between barely have room to breathe.

And carry a very big sword ...

6 Types of Strangers You May Meet If Your Child Has Down Syndrome
Kari Magner-Peck, The Mighty, 22nd September 2015
Unwanted commentary by strangers about my 8-year-old son who has Down syndrome is a common occurrence. I understand noticing difference; that in and of itself is not objectionable to me. What is objectionable is how my son’s difference is somehow seen as an invitation by strangers to make comments that — whether they know it or not — are offensive and hurtful ...

Stop the #Rword! 
NSW Council on Intellectual Disability, 22nd September 2015
NSW CID wants to say something and wants to say it loud and clear. 
The use of the word "retard" as an insult is just not on. 
NSW CID was very disappointed to see an Australian newspaper journalist - use the hashtag “leftard” in a twitter post on 20/9/2015. 
"Everyone hates this word. It is just one word - but it is outdated and offensive. It is derogatory - please use another word" says NSW CID Chairperson Michael Sullivan, who has Down syndrome. 
Sullivan feels that "using that word is just unfair and it is not acceptable". 
NSW CID, the New South Wales Council for Intellectual Disability, advocates with and for people with intellectual disability to change things for the better. Executive Director Advocacy, Aine Healy reveals that "changing societal attitudes about people with intellectual disability is one of our major challenges - the recent insensitive use of this word in the media indicates that there is still much progress to be made". 
People with intellectual disability are so many things - students, employees, partners, sportsman, advocates, friends and family members - they are so much more than a label. They do not deserve to be at the brunt of hurtful and cruel insults. The "R" word reinforces negative, demeaning and untrue stereotypes. 
NSW CID calls upon the media and the wider public to refrain from using the word. As Sullivan wisely suggests -"Get a dictionary and use something else".
The Guardian, 13th August 2015
... When I was younger, I always hoped that one day I’d read a book about someone just like me.

I did find characters who were pretty similar to me – the brunette teenage girls who loved reading and writing – but there was always one important trait that I could never find in any protagonist of all the books I read when I grew up ...
Day 1 was a great route - we had over 35 bikes along, including
 the DTeam which are DT200's. Arrived in Gunning a little chilled.
We picked up some more riders here for Day 2 to Urana.
Is still a bit cold but sunny 😃

There will be more to see on Facebook, and you can visit the website to donate.

People with Down syndrome on stage, on the catwalk, on film, behind the camera, in business ...

The print edition of the October 2015 issue of the Australian Womens Weekly includes an article on model, Madeline Stuart, the local girl the whole world wants,  by Michael Sheather. The article is in the iPad edition, but not yet linked to the AWW website - we'll post a link if it is added.

Madeline Stuart, Model With Down Syndrome, Walks In New York Fashion Week
Carly Ledbetter, Huffington Post (Australia), 14th September 2015
Madeline Stuart, an 18-year-old Australian model who has Down syndrome, walked the runway at New York Fashion Week on Sunday ... this article includes a great photo spread.

The Stage, September 2015
Actor Tommy Jessop is performing in Much Ado About Nothing with Blue Apple Theatre, a company for actors with learning difficulties. He has also begun a career in presenting, hosting an episode of BBC’s Inside Out South about his experiences with the production.

You just never quit
Shgereen Khalil, Inner West Courier, 15th September 2015
Having Down syndrome has not stopped Chris Bunton embracing any challenge thrown his way ...

What’s It Like To Be A Cinematographer?
Bus Stop Films (blog), 17th September 2015
...  we chat to Bus Stop Alumni, filmmaker, writer and actress, Audrey O’Connor about her experience working as a cinematographer with Henry Smith on our 2012 film, The Interviewer. Audrey also recently and autonomously, shot and edited her own 2 min short film ‘What’s the Mystery’ where she exercised some fantastic cinematic techniques ...

Emma: Master Shredder
Kathleen Calderwood, ABC Open, 17th September 2015
Jo Lynam hoped for years that her daughter Emma would learn to read and write. She thought this skill was essential for Emma to find a job; but it turned out to be the secret of her success.

Emma now runs her own 'master shredder' business in Townsville in north Queensland, and has four clients including solicitors and a credit union ...

Thursday, 24 September 2015

A big weekend!

2015 Scrapheap Adventure Ride

Congratulations to Perry Gilsenan and his team on putting together another adventurous event.This year's ride to Urana officially sets off this morning from Wiseman's Ferry and various other points, raising community awareness, making friends and raising funds along the way.

We look forward to seeing your photos and hearing your stories from the weekend.  Ride well and safe, enjoy the adventure!

Lots more to see here, on Facebook, and visit the website to donate.

National Down Syndrome Swimming Championship

The Down Syndrome Swimming Australia National Championships are on this weekend in Sydney (Wahroonga).

Good luck to all of the competitors and support team - we look forward to hearing about the meet, and seeing your photos.

Wednesday, 23 September 2015

Advocacy at work

Incidents of discrimination and bullying are still everyday events in the worlds of many people with disabilities, and the need for swift, responsive and effective advocacy exists alongside broader campaigns for inclusion and acceptance, as these two examples show:

When a journalist posted an insulting hashtag on Twitter earlier this week, in relation to comments about the lack of a Minister for Disability in the new Federal Cabinet, the NSW Council for Intellectual Disability came out to highlight, correct, advocate, and to offer disability sensitivity training. This morning, NSW CID posted on Facebook:
Good News!! - an update on the ‪#‎Rword‬ post!
Yesterday we received an apology from both the journalist and The Australian newspaper. Plus an apology on twitter! The paper said they will take us up on our offer to work with them on some disability awareness strategies.

Thanks to everyone who liked and shared our post. Lots of people agreed with us - don't use the #Rword 
Together we have made some noise and some progress! Well done and thank you!


You might also have been aware of an example of blatant discrimination that occurred in Brisbane
recently, and 'went viral' on social and other media. In this case, the young man's family and the media were his advocates, and an apology has been issued. Down Syndrome Australia CEO, Ruth Weber was interviewed on ABC radio:
JB Hi-Fi is committed to providing all customers with the best possible shopping experience. 
We have investigated the incident involving James Milne and his family at our Mount Ommaney store. 
We apologise to James and his family for any distress he has suffered as a result of this incident. 
JB Hi-Fi and the manager of our Mount Ommaney store believe that we could have managed this in a better way in the interests of James and his family. 
JB Hi-Fi is committed to learning from this and improving our customer experience across all of our stores. 
To support this we are reviewing our customer policies to make sure that they reflect best practice. 
Richard Murray CEO of JB Hi-Fi said “We would like to apologise unreservedly to James. We should have done better yesterday. We are going to make sure that we learn from this and do better in the future. I have sent a personal letter of apology to James and we are continuing to endeavour to contact the family to apologise directly.”

Bus Stop Films and Genevieve Clay-Smith: winners again

Over the the short life of Bus Stop Films, we have often said 'congratulations' to Genevieve Clay-Smith and her students and fellow film-makers, several of whom are people with Down syndrome - for the excellent work they do in teaching, promoting inclusion through film-making, and winning more international awards than we can count, because they are great filmmakers. And this week, there are two more reasons.

Genevieve has won a major national award, and several Bus Stop short films have been added to the QANTAS in-flight entertainment schedule.  That should liven up many a travel experience. So if you are flying with QANTAS soon, you will be able to tune into the multi-award winning Be My Brother, and The Interviewer, both starring Gerard O'Dwyer.

Congratulations on your award, Genevieve and congratulations Bus Stop on your work with QANTAS.

Women of the Future, Judges' Choice Winners
Australian Women's Weekly, 22nd September 2015

Dame Quentin Bryce announced Genevieve Clay-Smith and Marita Cheng as the Judges' Choice winners tonight at the Art Gallery of New South Wales. It is the first time two women have won the coveted title.

Both women have been awarded $10,000 cash, a $10,000 Qantas travel bursary and year's Qantas Club membership.

Genevieve Clay-Smith, 27. Co-founder, Bus Stop Films
As a student, Genevieve Clay-Smith spent 18 months as a trainee film-maker creating a documentary for Down Syndrome NSW. Through this traineeship she met Gerard O’Dwyer, a man with Down Syndrome who wanted to be an actor. They went on to make a film together, Be My Brother, which won the short film festival, Tropfest, in 2009. 
It was enough to convince Genevieve to start the not-for-profit Bus Stop Films, an outfit which stages weekly workshops teaching special-needs students the art of film-making. Having already made six short films and won 40 international awards, Genevieve wants to partner with a large organisation to expand the program. 
“There is no other organisation in the world helping people with an intellectual disability to produce films,” Genevieve says. Bus Stop Films productions are truly inspiring and the judges are in no doubt that Genevieve will be a future leader in our country.
Visit Bus Stop Films.
Bus Stop Films posted on Facebook today:
Thank you to all our supporters and those who voted in the Women's Weekly Women of the Future awards in support of our co-founder and our program. We are so thrilled to announce that last night Genevieve was awarded with a Women of the Future judges choice award for Bus Stop Films. 
"Nothing happens with out a team and supporters. Bus Stop wouldn't be able to do what it does without a dedicated team of people who believe in the impact the film studies program is having. 
"This scholarship will help Bus Stop in its efforts to become sustainable and scale its program. It will be put towards creating a film studies curriculum and more which is very exciting.  
"I'm so grateful that the judges wanted to see this award invested into Bus Stop Films, we are the only organisation in the world dedicated to helping people with an intellectual disability have a 'film school experience' and make professional short films with industry mentors with the aim of helping to increase English and literacy skills as well as life ready skills, confidence and wellbeing," said Genevieve.

Tuesday, 22 September 2015

News and commentary on the NDIS (38)

The National Disability Insurance Scheme has been the subject of much news and commentary recently, both in disability circles and in the general media.  There have been major announcements on its rollout and a review of the NDIS Act, and questions about oversight of the implementation of the NDIS in the wake of the Federal leadership and Cabinet changes:

Our blog posts on the NDIS roll-out announcement, and links to further information are here and here.

Full rollout of the NDIS
Down Syndrome Australia, 15 September 2015
Down Syndrome Australia has today congratulated the Federal, NSW and Victorian governments on the signing of the bi-lateral agreements, which will secure the full rollout of the NDIS.

“Today’s ceremony is the first in what we hope will be many – that will allow all people with disability throughout Australia to access the scheme. The rest of Australia should be in no doubt about the importance of today to people with disability,” Down Syndrome Australia CEO Ruth Webber said.

Sky News,17th September 2015
Kelli Gowland and Joy Batholomew, both members of Down Syndrome Association ACT, tell Sky News what the full rollout of the NDIS will mean for their families on the occasion of the signing of the bi-lateral funding agreements between the Federal Government and the Victorian and New South Wales Governments.

Malcolm Turnbull's new ministry: People with disabilities risk losing their 'voice' with loss of dedicated portfolio
Jane Lee, Sydney Morning Herald, 21st September 2015
People with disabilities risk losing their voice in Parliament as a result of Prime Minister Malcolm Turnbull's decision to remove a dedicated disabilities portfolio from his cabinet, advocates say.

Mr Turnbull has shaken up the responsibilities for social services, promoting Senator Mitch Fifield - who was formerly an assistant minister responsible for disabilities and the aged care system – to become the Communications and Arts Minister. Mr Fifield was also responsible for overseeing the roll-out of the National Disabilities Insurance Scheme (NDIS) ...

Independent review of the NDIS Act, 15th September 2015
The Australian Government has commissioned an independent review of the National Disability Insurance Scheme Act 2013 (NDIS Act), as required under Section 208 of the NDIS Act. In accordance with this legislative requirement, the Commonwealth and state and territory disability ministers have agreed that Ernst & Young (EY) conduct the review.
Purpose and scope of the review

The purpose of the review is to assess the operation of the NDIS legislative framework (comprising the NDIS Act and the NDIS Rules) and develop recommendations as to whether any improvements can be made to better support the objectives and principles of the NDIS Act. The Terms of Reference for the review, as agreed by Ministers ...
  • Closing date for submissions: 9th October 2015

Unveiling NDIS Housing Funding Principles
Luke Bo’sher, Pro Bono News, 22nd September 2015
This announcement has been a long time coming. Governments have never publicly released an official housing strategy. The announcement has very important information in it that sets the foundations for how NDIS accommodation will work. The flesh will be put on the bones of these principles in a more detailed strategy that will come out by December 2015.

The six principles announced by the Prime Minister and State Premiers build on the NDIA’s previously presentations on housing.

Disability Loop e-News, #7, 11/9/2015

Added 23/09/2015:

Disability Loop e-News, #8, 23/9/2015

Latest updates to 'events' pages

Down Syndrome NSW events

Down Syndrome NSW Annual General Meeting

Sunday 18th October 2015
10:15am for 10:30am start

Information and Cultural Exchange Inc. (ICE)

8 Victoria Road, Parramatta 

RSVP (for catering purposes):

Other events

These links provide information about events run by other organisations that might be of interest to people with Down syndrome, their families, carers and professionals who support them.

What Makes a Home 
Family Advocacy, presented by Darcy Elks. An '... event to broaden your thinking and take advantage of the new funding system.'
20th October 2015 - West Ryde

CID TV Launch
NSW Council on Intellectual Disability: CID TV - news, stories, interviews, current affairs and more. TV made by people with intellectual disability.
5:30pm – 7.30pm Wednesday October 21 2015 - Surrey Hills

Mini Murmurs 
Murmuration Dance Theatre - free weekly trial classes for parents and their newborns to 5 yr olds, with or without a disability. A fun and creative movement class, combining a series of exercises that aim to improve physical and mental well-being of parents/caregivers and their children. Registration essential. 
Tuesdays, November 2015 - Marrickville.

44th Annual NDSC Convention 
(US) National Down Syndrome Congress
21st - 24th July 2016 - Orlando, Florida

    Monday, 21 September 2015

    Federal Cabinet reshuffle

    While every ministry is as relevant to the lives of people with disabilities and those who support them as to all Australians, some portfolios can have more impact than others ... so who holds key portfolios in the new Cabinet to be sworn in today, and what changes do we need to be aware of?

    An updated list of Ministries will be posted on the Australian Government website, here, and is available now on the Liberal Party website, here.

    Key Ministers will be:
    Social Services - Christopher Porter (WA)
    Health and Sport Minister - Sussan Ley (NSW)
    Education and Training Minister - Senator Simon Birmingham (SA)
    Employment Minister and Minister for Women - Senator Michaelia Cash (WA)
    Treasurer - Scott Morrison (NSW)
    Some commentators are disappointed that there is no Minister for Disability, or Assistant Minister for Social Services with that responsibility, given the timing of the National Disability Insurance Scheme full rollout. Senator Mitch Fifield who has had responsibility for the NDIS has been moved to Communications and the Arts. The NDIS will remain under the umbrella of the Department of Social Services.

    Disability not ignored, Turnbull insists
    AAP (via 21st September 2015
    Malcolm Turnbull insists his government is committed to the national disability insurance scheme, even though there is no specific disability portfolio in his new ministry.

    "The government's policy on the NDIS is absolutely unchanged, our commitment to it is unchanged," Mr Turnbull told reporters in Canberra on Monday ...

    NSW Council for Intellectual Disability said Facebook (20/09/2015):
    ... [Social Services Minister Christian Porter's] role will include oversight of the National Disability Strategy (NDS) and the NDIS. NSW CID looks forward to working with him and his office. 
    NSW CID notes that previously there was an Assistant Minister, but this role no longer exists. 
    There was also no mention of disability in the announcements. Given the importance of the NDS (National Disability Strategy) and NDIS (National Disability Insurance Scheme) and the major social reform it entails - there could have been the option of a disability portfolio. 
    Nonetheless NSW CID shall continue our work in progressing the BIG issues that matter for people with intellectual disability.
    Adam Creighton, a journalist at The Australian caused widespread offence with a tweet noting that there will not be Ministers for several minority groups, provoking a well-deserved, swift and incisive reply from Aine Healey, Executive Director of NSW CID, on Facebook:
    Can’t believe we still are having this conversation. Use of the word “retard’ as a slur or insult is just not on! 
    An Australian newspaper journalist has done just that on Twitter today. 
    It is rude and hurtful. It must stop. It belittles people with intellectual disability.
    It reinforces negative, demeaning and untrue stereotypes. 
    People with intellectual disability are so many things – students, employees, partners, sportsman, advocates, friends and family members – they are so much more than a label. 
    I am pictured below with my boss Michael. He is the Chairperson of our Board. Michael works in open employment, has a partner and enjoys spending time with his family. He is dedicated, organised, passionate and thoughtful – everything a boss and Chair should be. 
    Michael also has Down syndrome. He and the people he represents at NSW CID do not deserve to be at the brunt of hurtful and cruel insults. 
    I’d get him to write a post himself – but I am not going to annoy him on a Sunday evening because a journalist has been thoughtless. But, we will be taking this matter further. 
    Using the “R” word is just NOT ON! End the ‪#‎Rword Please like and share this post if you agree. 
    Aine HealyExecutive Director Advocacy
    Added 23/09/2015:

    NSW CID posted on Facebook today (23/9/2015)
    Good News!! - an update on the ‪#‎Rword‬ post!
    Yesterday we received an apology from both the journalist and The Australian newspaper. Plus an apology on twitter! The paper said they will take us up on our offer to work with them on some disability awareness strategies.

    Thanks to everyone who liked and shared our post. Lots of people agreed with us - don't use the #Rword 
    Together we have made some noise and some progress! Well done and thank you!


    Down Syndrome NSW Annual General Meeting: 18th October 2015

    Down Syndrome NSW Annual General Meeting

    Sunday 18th October 2015
    10:15am for 10:30am start

    Information and Cultural Exchange Inc. (ICE)
    8 Victoria Road, Parramatta (Corner Victoria Rd and Vickers St)

    RSVP(for catering purposes):

    On street parking is available near the venue, there is paid parking available at Novotel Parramatta and 1 hour limited free parking at the Council car park next to McDonalds. ICE is approximately a 15 minute walk from Parramatta Station.

    As well as the business of the AGM we will be privileged to see a presentation on the recent World Down Syndrome Congress in Chennai, India, specially prepared by some of our members with Down syndrome who attended.

    If you have not renewed your membership with Down Syndrome NSW since the annual notices went out at the end of June you can renew online here or by calling the office on 02 9841 4444.

    Continuing your membership means continued access to workshops, training and support, the latest information on Down Syndrome and, most importantly, the chance for your voice to be heard in our work supporting the rights of people with Down syndrome.

    Friday, 18 September 2015

    Weekend reading and viewing: 19th - 20th September 2015

    A comment on Mamamia's article on child models with Down syndrome
    Catia Malaquias, Starting with Julius, September 2015
    A few days ago, an article appeared in the online publication “Mamamia” titled “The models with Down Syndrome we’re seeing all have one thing in common – Are child models with Down Syndrome really a great win for diversity?” ...

    I read it with interest, of course, and I agreed with some of the points that it makes. The article also linked to several videos of the late Stella Young, the Australian disability activist, speaking about the portrayal of people with disability, especially in the media, which so frequently stereotypes, objectifies and exceptionalises ...

    Brotherhood and beyond: part 1 and Brotherhood and beyond: part 2
    Alex McAuley, The Life that Max Built, 19th August and 3rd September 2015
    ... It’s only now with the benefit of hindsight that I realise what an exceptional little boy he was. Not only had he been forced to share the limelight with a new baby, this particular new baby was taking a tad more of said limelight than Harry would probably have liked! Harry was being gently, but persistently, nudged off centre stage by the innocent and unknowing Max. One could reasonably have expected this to result in tantrums, jealousy and bad behaviour, but instead Harry, who was not yet two years old, took on the role of big brother, rolled up his sleeves and decided he would help ...

    Adventures in Social Inclusion: I'll be there for you ...
    My Choice Matters (blog), 14th September 2015
    Friends and connections are an essential part of anybody's life however for people with disability it's not always as simple as Nidhi Shekeran explores in this piece about social inclusion ...

    Glasses for children with Down syndrome
    Sipping Lemonade, 12th July 2015
    A couple of months ago, we learned that Kate needed glasses.

    My first thought (after learning all about her prescription, of course) was: She’ll be adorable in glasses!

    My second thought was: Wait — how in the world will we get her to keep them on? (She’s not a fan of anything she deems an extraneous accessory: i.e., hats, shoes, sunglasses) ...

    People With Down Syndrome Design Unique Tattoos For Loved Ones
    Kimberly Yam, Huffington Post Australia, 17th September 2015
    These tats are beyond awesome. In an episode of tattoo reality show "Ink Master" that aired earlier this month, the contestants (all professional tattoo artists) were challenged to ink clients with designs created by their loved ones, who all have Down syndrome. The project not only produced beautiful results, it also moved several of the tattoo artists who were involved ...

    "I'm here to get a tattoo of the sign language symbol of 'I love you,' to show the positive impact Joe's had on my life."... 

    "... I want to get a tattoo of her artwork on me to show I really believe in her as an artist" ...

    Team Chan fund-raising for Down Syndrome NSW in Blackmores run

    Team Chan is taking part in the Blackmores Sydney Running Festival 2015 this Sunday, 20th September:
    While getting fit and staying healthy, we also want to help raise much needed funds for Down Syndrome NSW, for our dear friend Olivia Faith who has been such an inspiration to us. She truly is a little Aussie battler, overcoming health issues these past 4 years and yet continues to be a bright and happy girl who brings so much light and joy into the lives of those she has touched along the way. 
    We hope to raise some money which will work towards giving people with Down Syndrome the same access to society as everyone else, in areas of health, education, work, family and being part of the community. For more information on the great work of this not-for-profit organisation visit
    You can support Team Chan and Down Syndrome NSW through this event, here.

    Thursday, 17 September 2015

    Responses to NDIS rollout announcement

    Sector Welcomes Landmark NDIS CommitmentProBono News, 17th September 2015
    ...People With Disability Australia President, Craig Wallace, said the organisation was pleased the NDIS deals were a priority for the new Liberal leader.

    “We welcome this commitment by Prime Minister Malcolm Turnbull and NSW Premier Mike Baird and Victorian Premier Daniel Andrews," Wallace said.

    “It's great to see such a significant commitment to the NDIS so early in the life of a refreshed government and at the Prime Minister’s first major press conference.”

    National Disability Services Chief Executive, Dr Ken Baker, said the agreements were a watershed moment for the sector ...

    NDIS roll out in NSW and Victoria and genuine change
    Libby Ellis, InCharge, 16th September 2015
    ... I am interested in people getting the most out of the NDIS. And for me this means transformation. It means moving from the margins. It means having a life where you are more than just a client or an object of other people’s purpose. I don’t believe that transformation ever lands solely from ‘on high’ or from the ‘top down’.

    In my experience those that are smashing our perennial low expectations, who are citizens in the broadest sense of that term, those who can see that their own life means something, all of them have seized moments when the system has popped out with something that can be shaped. Transformation starts with an intent – I no longer desire to accept that what is offered is all that is possible. No planner, no system can make this happen. This is an inner spark for more ...

    What does the community think of the NDIS roll out plans?
    Every Australian Counts, 16th September 2015
    The release of the NDIS roll out plans for NSW and Victoria yesterday had everyone talking. We’ve heard from the politicians but what is the disability community saying? ...


    NDSC 2015 Convention recordings
    Online recordings from 2015 (US) National Down Syndrome Congress annual Convention can be purchased by those who did not attend the Convention held in Phoenix in July.

    Prof Sue Buckley, See and Learn (blogs), 9th September 2015
    As we continue to release new See and Learn teaching programs as apps and kits – most recently with the release of the first step in See and Learn Numbers, I wanted to share some of the reasons why we are developing these resources and what we hope they will offer children with Down syndrome ...
    (Reposted from 10/09/2015 in case you missed it there.)

    Preparing children for a sleep study
    Terri Couwenhoven MS - Clinic Coordinator of the CHW- Down Syndrome Clinic in Milwaukee, WI shared these resources on helping a child get ready for a sleep study - shared by the Adult Down Syndrome Clinic, via their Facebook page
    Cincinnati Children’s Hospital - social story
    Children’s Sick Kids Hospital Toronto - You Tube video social story 
    Ellie the Elephant Has a Sleep Study, Christie Beckwith,  Sleep Technologist, Boston Children's Hospital, 2014 (available Kindle and in print)   
    Helping Your Child withIntellectual/Developmental DisabilityPrepare for a Sleep Study Vanderbuilt-Kennedy Centre 

    Social Model Animation
    Geoff Adams-Spink, 2011

    Wednesday, 16 September 2015

    NDIS: NSW rollout plans announced

    From Every Australian Counts, today (16th September 2015):

    News just in: both the New South Wales and Victorian Premiers have just joined the Prime Minister to release their NDIS roll out plans!

    You can now find out when the NDIS is coming to you.

    This is a significant milestone on the road to the full roll out of the NDIS across all of Australia.

    Thanks to all of you who have campaigned for so long for a better deal for people with disability – we have achieved so much together.

    And congratulations to the NSW, Victorian and Federal governments for seeing it through.

    NSW Minister for Disability, John Ajaka has created a special message of thanks for Every Australian Counts supporters. You can watch it here.

    NSW, Victorians to get NDIS from July 2016 
    SBS News/AAP 16th September 2015
    More than 200,000 Victorians and NSW residents with a disability will start getting national disability insurance scheme packages from mid-2016.

    THE premiers of the two states on Wednesday signed long-awaited funding agreements with the commonwealth in Canberra nutting out how the scheme will be rolled out to 245,000 eligible people.

    That's more than half of the expected 460,000 across the country due to get the scheme when it's fully rolled out ...

    Step Up! Riverina 2015

    Tuesday, 15 September 2015

    What might the new Prime Minister mean for Australians with a disability?

    With the change of Prime Minister last night, the disability community is keenly watching for indications of the potential impact on people with disabilities, and those who care for them. Cabinet changes are not expected to be announced until the weekend:

    What does our new PM think of the NDIS?
    Every Australia Counts, 15th September 2015
    As Australia wakes up to the news that Malcolm Turnbull has replaced Tony Abbott as our new Prime Minister, we have a look at what he has said on the public record about the NDIS ...

    People with Disability Australia, on Facebook, 15th September 2015
    On Twitter our President Craig Wallace congratulated Mr Turnbull on his elevation to the nation's highest office and said we are ready to work with the new Prime Minister on great reforms like the NDIS National DisabilityInsurance Scheme and increasing employment of people with disability.

    Craig also called on Mr Turnbull to end the sledging about lifters and leaners, restore the Disability Discrimination Commissioner position and provide funding so the ABC Ramp Up blog can resume operating.

    Turnbull Does Not Mean Easy Ride for Social Sector
    Xavier Smerdon, Pro Bono News, 15th September 2015
    Australia’s social sector has been warned that it will need to work hard to convince Malcolm Turnbull that it is critical to building a stronger and more inclusive economy ...

    Employment news and resources

    Investing $650 million for Australian Disability Enterprise jobs
    Senator Mitch Fifield, 25th August 2015
    The Australian Government is delivering employment certainty for up to 20,000 people with disability by committing more than $650 million to Australian Disability Enterprise (ADE) jobs over the next three years.

    The Assistant Minister for Social Services, Mitch Fifield, and the Member for Robertson, Lucy Wicks, today visited Fairhaven Disability Services to announce the funding.

    This is essential support for ADE jobs as workers with disability transition to the National Disability Insurance Scheme (NDIS).

    ADEs are incredibly important in the continuum of employment options for people with disability, provide jobs in businesses such as laundries, cafes and gardening crews ...

    Nance Haxton, The World Today (ABC Radio), 25th August 2015
    The age and disability commissioner Susan Ryan ... says employment prospects for people with a disability are being hampered by entrenched ignorance and a lack of understanding of their needs ...

    We Can Work - videos
    Inclusion Australia, 2015
    A collection of videos demonstrating the capacity of people with intellectual disability to work in open employment with the right support.

    Monday, 14 September 2015

    Step Up! Parramatta: 25th October 2015

    The sun is shining, spring is here and it’s time to get together and get moving!

    It’s that time of year again – StepUP! So get your walking shoes out and register online NOW.

    This year we’re doing things differently  –  StepUP! is moving to Parramatta Park!

    The ‘walk’ - instead of one long continuous circuit, this year the walk will instead have a few fun activities along the way.

    Kids (and any ‘big kids’ who want one too!) will be given a ‘Walk Passport’. They then collect stamps for their passport at designated stations along the route. A prize awaits all those finishing with a full passport.
    Family Fun Day – enjoy yourselves after the walk:
    • Get up close and personal with small animals at the PettingZoo
    • Check out the Fire Truck (and Fireman!) visiting from Parramatta Fire Brigade
    • Have your face painted
    • Get the Balloon Twister to make you something fun
    • Choose your design and watch your badge being made by our UPClub!
    Indulge in a FREE lunch, provided by CMP 
    Enjoy performances by Parramatta Brass Band.
    The park has lots of big shady trees also and a children’s playground nearby, so bring a picnic rug and settle in to enjoy a relaxed day with family and friends.

    Sunday 25 October 2015 
    9.30am – 1.30pm 

    At ‘Salter's Field', Parramatta Park, Pitt Street, Parramatta

    CLICK HERE to register to come along. It’s important for us to know how many people are coming so we can cater accordingly so please do register – it will only take 2 minutes! If you don’t want to register online, please call the Down Syndrome NSW office instead on 02 9841 4444.

    Once registered, you will automatically be provided with a fundraising page – it’s up to you to choose to use it not. If you do (we would love it!) it’s really easy – just send the link to your friends, family and colleagues and ask them to support the work we do by clicking on the link provided. All donations over $2 are tax deductible and people automatically receive a receipt.

    Friday, 11 September 2015

    Weekend reading and viewing: 12th - 13th September 2015

    Emotion 21 in India
    Melbourne dancers, emotion21 have posted a fabulous series of photos from their recent visit to Chennai, India, performing at the 12th World Down Syndrome Congress, and at several community events in India.

    How My Son With Down Syndrome Fixed a Hotel Problem I Couldn’t
    Sherry Palmer, The Mighty, 3rd September 2015
    ... A leader sees the abilities in others, calls them to the task and then gets out of the way and allows them to do it. A leader inspires others — not with their elevated sense of self, but by their sense of seeing what’s possible and elevating others. A leader is fearless.

    Sometimes I forget what a leader my son, Charley, is. But then I saw him in action first-hand this morning. Here’s what happened …

    We Planned Our Trip to ‘Holland.’ Here’s Why We Didn’t Need to Stay
    Rebekah Moilanen, The Mighty, 31st August 2015
    ... We chose Holland. We adopted our son who has Down syndrome. We fully expected his therapy sessions, his slower milestone gains, his amazing feats of double-jointedness and his beautiful little almond-shaped eyes. But somehow Holland ended up simply being stop number one on our journey around the world. We never expected his cancer, his kidney failure, his seizure disorder, his catheters, his feeding tubes and all of the other issues that he has that have nothing to do with his Down syndrome ...

    Down Syndrome, Prenatal Testing, and a Teenage Soap Opera? The Importance of Switched At Birth
    David M Perry, The Mary Sue, 1st September 2015
    Switched At Birth is a teen soap opera ... on ABC Family (USA). It also might just be, to my continuing pleasure and surprise, the best show on television at addressing disability issues. For three and a half seasons, the show has explored Deaf issues mostly admirably. Now, the ex-girlfriend (Lily) of the brother (Toby) of the girls who were “switched at birth” (Bay and Daphne) is pregnant. In the final scene of the first new episode this fall (two weeks ago), revealed she had been through genetic screening and received a positive test for Down syndrome.

    I’m the father of a boy with Down syndrome and a disability-rights journalist. The idea of a soap opera addressing an issue in which I am so personally invested would have, in almost any other context, made me pre-emptively wince. But Switched at Birth has been doing an excellent job engaging with Deaf culture and issues affecting the Deaf community for years ...

    To My Daughter With Down Syndrome On Her First Day of Kindergarten
    Deanna Smith, Huffington Post, 27th August 2015
    ... Today you enter Kindergarten. You, a big, beautiful, grown up little person, begin your educational journey ... Now as I think of you sitting tall in your seat marked with your name, listening to your teacher, learning alongside your peers, being a kindergartener, I am once again terrified ...

    Mini Murmurs: for parents and newborns to 5 yrs

    Mini Murmurs is a new initiative of Murmuration Dance Theatre:
    • Free weekly trial classes for parents and their newborns to 5 yr olds, with or without a disability, throughout November, in Marrickville.
    A fun and creative movement class, combining a series of exercises that aim to improve physical and mental well-being of parents/caregivers and their children. This class will be combined with free time in the space to allow everyone to chat and play ..
    Our aim is to provide an opportunity for children and their parents and caregivers to relax and enjoy each other’s company in a structured, creative and inclusive environment ...
    For more information please contact via email or phone 02 9569 4580 Wednesday – Friday.
    • Registration is essential, no commitment necessary, casual attendance welcome - link on website

    Thursday, 10 September 2015

    Prof Sue Buckley on learning resources

    Prof Sue Buckley was one of the keynote speakers from Down Syndrome Education International (DSE) at the Australian Down Syndrome Conference in Adelaide in August. Since the 1970s, UK-based DSE (previously known as the Sarah Duffen Centre), has been at the leading edge of the study of learning in children with Down syndrome, with an international reputation for the quality of its research and practice with both families and professionals. 

    In this blog post, published yesterday in the UK, Sue explains how their latest resources build on previous and recent work, using the latest technology, and how both families and professionals can use them most effectively:

    Why we are developing the See and Learn programs
    Prof Sue Buckley, See and Learn (blogs), 9th September 2015
    As we continue to release new See and Learn teaching programs as apps and kits – most recently with the release of the first step in See and Learn Numbers, I wanted to share some of the reasons why we are developing these resources and what we hope they will offer children with Down syndrome.
    For many years, we have drawn on a growing body of research investigating the learning difficulties experienced by children with Down syndrome to inform better education. We published a book and a video based on some of our earliest research in 1986. Ever since then, we have worked to bring evidence-based advice to parents and to teachers through our services, publications and our training ...

    R U O K ?

    10th September is R U O K Day. Ask a person with Down syndrome:

    How can we support people with Down’s syndrome to have good mental health?
    Down's Syndrome Association (UK) blog, 1st September 2015
    What exactly is good mental health? 
    So often, discussion around mental health tends to focus on mental health conditions, rather than what constitutes good mental health. According to the World Health Organisation, mental health is “a state of well-being in which the individual realizes his or her own abilities, can cope with the normal stresses of life, can work productively and fruitfully and is able to make a contribution to his or her community.” 
    In the past, mental health conditions may have been overlooked as a result of diagnostic overshadowing (e.g.“they are behaving like that because they have Down’s syndrome” rather than a proper and thorough examination taking place. 
    Poor mental health is not inevitable for people with Down’s syndrome. Many people with Down’s syndrome experience positive mental wellbeing and do not exhibit signs of poor mental health. However, there are certain factors that may make people with Down’s syndrome more susceptible to poorer mental health ...
    Mental Wellness in Adults with Down Syndrome is available for loan to members from the Down Syndrome NSW library. Members can contact Jo in the library via email to arrange a loan. The Down Syndrome NSW library catalogue is available to view here.