Monday, 5 October 2015

Latest additions to 'events' pages

Down Syndrome NSW events

Jumbo Joy Flight
Turramurra Rotary and Qantas Pathfinders are once again offering members of Down Syndrome NSW places on their annual Jumbo Joy Flight - a Boeing 747 taking children and their carers on a 90 minute joy-flight over the Sydney-Newcastle-Wollongong area.

Places are extremely limited (a total of 20 including Parents/Carers) and places will be allocated on a first come, first served basis. This offer is only for current members of Down Syndrome NSW.

To register your interest - email on Wednesday 7th October from 9am onwards. Please include the name of the parent who will be going and the child (one child with Down syndrome and one parent/carer per family only).

Emails received before this time will not be considered. Phone requests will not be considered.
Attendees must be willing to sign a ‘Permission to Use Image Form’ – see here for details.
No places are guaranteed until you receive a confirmation email from us (approximately two weeks after you register your interest). Visit Turramurra Rotary's website to find out more about the event
Saturday 12 December 2015 - Sydney International Airport

Love My Shape 
Fabulous fashionista Nerida Lamprill, award winning hair and fashion stylist, and mother of a teen with Down syndrome, is in Sydney for one night only to meet with Down Syndrome NSW members and talk about looking and feeling good in the bodies we are in. Nerida will present from her new book, Love My Shape, which features beautiful young women with Down syndrome. Nerida believes knowing how dress to suit your unique physical features empowers you by building self-confidence and self esteem which influences other areas of your life. Numbers are limited so please book by calling Down Syndrome NSW on 02 9841 4444
6pm-8pm Thursday 15 October 2015 - Sydney City

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.

As of Now
Catalyst Dance Performance Accessible Arts - An excerpt from 'The Likes of Me' by Matt Shilcock. Utilising his changing bodily landscape as an expressive tool, Shilcock’s durational performance urges exploration of the body’s potential in defiance of any ideas about type, shape, form or ability.'As of Now' Studio Showing is performed by the Catalyst Dance residents, and choreographed by Kay Armstrong. This is a work in progress developed from the choreographic workshops during the residency. Q + A. Post-show Drinks
Saturday, 17 October 2015 - Carriageworks, Everleigh

Youth Focus - Get More Skills Youth Program
My Choice Matters - new workshops aimed at improving the voice, choice and control of people aged 14-17. We will use games, videos, stories and interactive sessions to help young people plan to be the hero in their good life. Refreshments and lunch provided. Register via mychoicematters or call 1800 144 653
17th Otober 2015 - Katoomba
24th October 2015 - Penrith
31st October 2015 - Windsor
7 November 2015 - Lithgow

We need more than cute to create change ...

Jackie Softly is the mother of a young man with Down syndrome, and has worked professionally for many years in family support, advocacy and education, travelling the length and breadth of Western Australia visiting metropolitan, rural and remote communities in the process. Her knowledge of the Down syndrome community in Western Australia is well recognised and respected, as is her commitment to rights and equity. She stepped in as acting CEO for Down Syndrome Australia for several months last year, and actively participates in a number of forums at local and national levels.  She is a diva ... a Bolshy Diva.

When Jackie expresses a view on social or any other medium, it's worth listening to. She has given us permission to reprint her personal Facebook post from yesterday:

I’ve been thinking, quite a lot, for some time, about Down Syndrome Awareness. If you haven’t noticed, it’s Down Syndrome Awareness month in many places, and the internet is brimming with
images of cute kids in chromosome themed t-shirts, teens and young adults in the US wearing homecoming king and queen regalia and of course, gorgeous young women on the fashion catwalk.

And I can’t help thinking, if it’s Down Syndrome Awareness week/month, what are the actual messages we are sending to the community? Are they actually getting out to the community, or are they mainly doing the rounds in our community? Are they actually making a difference to the lives of people with Down syndrome? It’s not that any of the above examples are bad, but if we ourselves aren’t clear on why we are posting and sharing them, there’s a very huge likelihood that other people won’t get the real message – many of the comments to these kinds of posts show that very clearly.

Don’t get me wrong, I love seeing photos of people, of all ages, with Down syndrome. I especially love photos of people with Down syndrome doing what they love, achieving their dreams and being proud of who they are. But, I despair when I see these photos accompanied by “inspirational” comments that don’t respect the person as a human being, but as a kind of life lesson, an inspiration for others. And please don’t get me started on the memes that suggest people with Down syndrome are actually angels and all that this notion implies…

I also wonder if we can post memes or photos that highlight a person’s genetic difference, including the array of chromosome t-shirts, while arguing for equal rights? I think maybe we can – it’s absolutely spot on to say “I’m different but I should be treated equally”. But are we actually making our message clear when we proclaim that our kids are “Rockin’ their extra chromosome”? I’m not convinced at all that we are. My take, looking at other people’s comments is that they see the cute, and cute can only get you so far. And, it kind of runs out when you grow up…

Down Syndrome Awareness has been around a long time. I remember our earliest local effort, close to 30 years ago, handing out leaflets with other parents at our information stand in the city, resplendent with cute photos of our little kids. Through the years all kinds of events, media and now online awareness strategies have been tried.

And I now wonder even more, how, or even whether, any of them have been particularly effective. Because, 30 years later, people with Down syndrome are still treated less favourably than others in almost every setting including education, employment, health care, support to live independently.

Many of the ancient beliefs about people with Down syndrome are still with us; the seemingly benign idea of the “always happy eternal child” lies behind so many of the barriers to real inclusion in our community. The notion that Down syndrome is a tragedy pervades attitudes throughout society, leading without a breath to the belief that life with Down syndrome is not worth living. How do we counter that with “awareness”?

So where do we go with the whole idea of Down Syndrome Awareness? For me, there are some clear answers emerging. We need to look at where we are now – what is life like for people with Down syndrome? What is missing, what is wrong, what are the battles still being fought for equity and inclusion?

We, parents and Down syndrome organisations, need to listen to people with Down syndrome, and help their voices to be heard – ensure they are heard. We need to work together with people with Down syndrome to run campaigns that focus on what is wrong, what is missing, to claim their rights as equal citizens. We need to learn from and work with other people with disability. Our purpose and our messages need to be clear. We need to know our goals and our targets. Sadly, cute pictures won’t get us where we need to be and changing from “awareness” to “acceptance” won’t do it either.

This year, I may not post something every day for Awareness Month, but when I do, I’m going to focus on rights. It’s a start in thinking of the work that still needs to be done.

So, is there a place for those chromosome t-shirts? Hell yes, let’s all wear them to Disability Pride events. Let’s help our kids to be proud of who they are and to raise their voices for equality. See you there!

Friday, 2 October 2015

Weekend reading viewing: 3rd - 4th October 2015

Gail Williamson: Changing Hollywood’s Perception of Disability
David Norby, The Hub, 11th September 2015
When her son, Blair, was born with Down syndrome in 1979, Gail Williamson did not suspect his condition would come to shape her own professional future. She did, however, recognize she could “absolutely silence a whole restaurant, just by carrying Blair on [her] hip.” It was a regular, and sobering, occurrence ...

Film Starring People With Down Syndrome Takes Aim at Misconceptions
Melissa McGlensey, The Mighty, 30th September 2015
When Roderick Stevens’ younger brother Andy moved in with him in 1993, there were lots of changes happening. Andy Stevens has Down syndrome and was 18 years old at the time.

The brothers had just lost their mother to cancer when Roderick moved Andy into his home in Sierra Vista, Arizona, with his then-wife and two small children. Roderick was busy working as a filmmaker but found himself deeply worried about his brother’s future and how he’d find his place in the world. Then Andy began asking Roderick to teach him how to drive ...

10 Things I Love About Having a Kid With Down Syndrome
Kat Abianac, Parker Myles, 15th July 2015
10. I love how awesome toddlers are. They’re funny, cute, and they have big heads on teeny little human bodies. It makes you go ‘awww’ and is the same lethal combination that has made many kittens famous on the internet ...

Kids and Adults with Down Syndrome Belong in the Picture
Amy Julia Becker, Parents, 30th September 2015
Parents like us can take credit for the rise in visibility of kids and adults with Down syndrome, both in the public view and in the media. Down syndrome is gaining a new type of visibility as more and more individuals, businesses, and campaigns recognize that this group deserves to be in the picture, both literally and metaphorically ...

Subway Dreams: Disability, Inclusion, and Identity in New York
Paras Shah, The Huffington Post, 29th September 2015
The World Health Organization estimates that one billion people, one in seven of the world's population, have some form of physical, sensory, or psychosocial disability. Taken as a class, people with disability have reduced access to healthcare, education, transportation, jobs, and overall quality of life ...

What not to expect from your child with special needs
Love that Max, 22nd September 2015
..."Did you ever think you'd be chilling with Max and enjoying a football game?"

"No," he said, and I knew just what he meant ...

She's Always Happy
Loving Lydibug, 21st September 2015
One word that is often used to describe a person with Down syndrome is that they are always happy. I have taken some time to observe Lydia and see how accurate that statement is. Honestly it drives me nuts because my mind is taken to all of the times she disobeys, yells and screams, throws a tantrum. To me, she has every emotion and really there is no difference with her than my other children. However, there is a difference! ...

How society disables people with disabilities
Helen Razer, SBS, 25th September 2015
For many people with a disability, life is no picnic. It can be more like a famine, in which survival depends on unwanted scraps.

The annoying thing about this scarcity – felt in work opportunity, education and all the most usual forms of inclusion – is that it doesn’t have to be that way. The bodies of people with a disability may sometimes produce “natural” disadvantages, but these are as nothing compared with disadvantages produced by the social world ...

... Senator Mitch Fifield, the former parliamentary secretary and shadow minister for disabilities, may have been promoted in government, but the rollout of the NDIS, whose responsibility now falls to the overstuffed social services portfolio, is at great risk of little attention.

It was a shock with potentially immense reverberations. It was barely reported ...

Down Syndrome Awareness/Acceptance Week/Month ...

Social media, paying scant attention to national boundaries, will blossom with stories, events and activities highlighting the lives of people with Down syndrome throughout over the next few weeks. In the US, and increasingly elsewhere, October is designated as Down Syndrome Awareness Month, with increasing focus insistence on moving beyond awareness to acceptance and inclusion.

While we officially reserve October's third week for observance, we needn't be too strict about the time frame - there's a lot to do and see. And Canada celebrates Down Syndrome Awareness Week during the first week of November ... so prepared for more blog posts, links and photos. Your contributions are welcome.

With excellent timing, CHILD Magazine has been announced as a finalist in the Publish 2015 awards for Australia's magazine industry. The nomination is for the May 2015 issue  (the diversity issue) featuring Dancers with Disabilities. Revisit the stories and see behind-the-scenes of the cover shoot.

Congratulations to Karen Miles and the CHILD Magazine team, and good luck for 21st October announcement.

Thursday, 1 October 2015

Sex education: rights and resources

To paraphrase the very knwledgeable and to-the-point Dave Hingsburger:
'... you can deny your son or daughter an education about sex and sexuality, but they will learn about it anyway - you just won't know what they have learned and how safe it is ...'
This Is What Sex Ed for the Intellectually Disabled Looks Like
Monica Heisey, Broadly, 30th September 2015
A lack of sexual education has an impact in all aspects of a person's life, so why are intellectually disabled people given so few opportunities to learn about sex on their own terms? ...

The Down Syndrome NSW library collection includes several items about sexuality education. You might like to start with this classic, which pretty much sets the benchmark:
Teaching children with Down syndrome about their bodies, boundaries, and sexuality: a guide for parents and professionals by Terri Couwenhoven
Members can contact Jo in the library via email to arrange a loan. The Down Syndrome NSW library catalogue is available to view here.

Disability policy a priority for Social Services Minister

Media release from Minister for Social Services, 30th September 2015:

Social Services Minister the Hon. Christian Porter MP has welcomed the finalisation of the machinery of government changes in the Turnbull Ministry that will see some changes to the composition of the Social Services portfolio.

As part of the changes the seniors and ageing policy will move to the Department of Health, and childcare policy will move to the Department of Education and Training, allowing Minister Porter to provide a strong focus on disability issues, including the rollout of the National Disability Insurance Scheme (NDIS).

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 ...