Address details

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

Monday, 31 August 2015

National Literacy and Numeracy Week

Following logically from Children's Book Week last week, this week is National Literacy and Numeracy Week:

Down Syndrome Education International has researched the development of literacy and numeracy in students with Down syndrome for many years, producing a range of resources to support both student learning and teaching practice for best outcomes.  This month DSE is offering webinars introducing their latest resource on numeracy:
Introducing See and Learn Numbers 
This online event discusses the development of number skills for children with Down syndrome and introduces DSE's new See and Learn Numbers apps and resources. See and Learn Numbers is the latest addition to DSE’s teaching resources for children with Down syndrome.

Most children with Down syndrome find learning about numbers a particular challenge. Basic number skills are important in everyday life, yet surveys suggest that many teenagers and adults with Down syndrome are unable to work out the correct change when using money or calculate using numbers up to 100 ...
from Down Syndrome Education International
The web page about these online events includes a facility to locate appropriate times for international time zones, such as this one for Australian Eastern Time:

Visit this page on the DSE website for information and links to book for events about speech, language and reading learning, instruction and resources.

'Estate Planning' seminar + webinar date

Estate Planning Seminar - last chance to register
Presented by Jonathan Harris from HarrisFriedmann Lawyers
Saturday 12 September 2015 Parramatta
For more information or to book, click HERE or call Down Syndrome NSW on 02 9841 4444

Can't get to the Sydney event? Save this date!
Estate Planning – Webinar
For people living outside of Metro Sydney, we will be offering an Estate Planning  webinar hosted by Jonathan Harris

7 - 9 pm Wednesday 14 October

Registration details will be confirmed in the coming month by email. To access the webinar, you will need a computer with internet access at a reasonable speed.

Please note, places for this webinar are reserved for people living outside of Sydney. 
A waitlist will be available for people based in Sydney who cannot make the live workshop in September.

Friday, 28 August 2015

Weekend reading and viewing: 29th - August 2015

Seven resolutions passed at World Down Syndrome Congress in ChennaiU Tejonmayam, Times of India, 21st August 2015
... The resolutions include educational equality, employment opportunities, establishing special support/knowledge centers across the country, better healthcare facilities, introduction of a comprehensive health policy, opening and maintaining of bank accounts and introduction of a medical passport ...

Growing Up
The Diary of a Not So Ordinary Boy, 21st August 2015
... he woke up with a whispered ‘yesssss’ at half past five (presumably he was relieved at his survival of the night), but being as he was right next to me, I told him the time and he nodded right back off with a huff ...

Home Schooling, and Teaching, a Child with Down Syndrome
Kari Wagner-Peck, Parenting Blogs, New York Times,15th February 2015
... He sat in the back of the classroom while other students participated in group activities, counting to four with his one-to-one aid. At home, he could count to 50.

Inclusion, we realized, works only if everyone involved believes in a child’s ability to be included and to contribute something to the group ...

I’m Tina, I’m a mum, this is my journey…
Down's Syndrome Association (UK)...When she came to our house, the midwife spoke gently; she reminded us what she had told me on my booking-in appointment regarding the nuchal screening and what the results meant. I couldn’t remember ever hearing this before; had I really agreed to have this done? Why did I not realise the importance of everything I had agreed to? ...

Maryanne and Tommy have a lesson for us all
Angela Kelly, Preston Citizen, 29th July 2015
The story of the couple with Down’s Syndrome who have just renewed their wedding vows after 20 years of married life is wonderfully heartwarming ...

The Weekly With Charlie Pickering Series 1 Ep 19
ABC TV, 26th August 2015 (on iView until 16th September 2015)
Comedy. Interview with Graeme Innes, disability advocate starts at 19 mins.

Are attitudes changing to the 1.4m people in the UK with a learning disability?
Katrina Scior, The Conversation, 27th August 2015
... 'Changing Attitudes to learning disability', a new review I produced for publication by Mencap, points to a double standard in public attitudes towards people with a learning disability. The British Social Attitudes Survey in 2009 found that just 41% of parents would feel very comfortable if their child had a classmate with a learning disability, compared to 76% for physical and sensory disabilities. This highlights a key problem: on the whole people say that those with a learning disability should be treated equally, but at the same time many behave in subtly prejudiced ways which in fact reinforce negative stereotypes ...

Two recent studies related to this week's focus on books, reading, and language development ...

Science Proves Reading To Kids Really Does Change Their Brains
Catherine Pearson, The Huffington Post, 6th August 2015
Pediatricians often recommend parents routinely read aloud to their young children. Now, for the first time, researchers have hard evidence that doing so activates the parts of preschoolers' brains that help with mental imagery and understanding narrative -- both of which are key for the development of language and literacy ...

Georgetown University Medical Centre, 24th March 2015
When we look at a known word, our brain sees it like a picture, not a group of letters needing to be processed. That’s the finding from a Georgetown University Medical Center (GUMC) study published in the Journal of Neuroscience, which shows the brain learns words quickly by tuning neurons to respond to a complete word, not parts of it.

Neurons respond differently to real words, such as turf, than to nonsense words, such as turt, showing that a small area of the brain is “holistically tuned” to recognize complete words ...

Thursday, 27 August 2015

'Barriers to Communication' Social Media Forum

People with Disability Australia will host a Facebook event this Saturday, 29th August 2015
between 10:00am and 4:00pm.
Communication and access to information is becoming more important than ever for people with disability as the National Disability Insurance Scheme (NDIS) rolls out. 
People with disability will struggle to have a say or have our voices heard if we are denied access, on an equal basis, to communication and information ... We want to know what your experiences have been when it comes to comes to communication and accessing information.
Click here to go to the event page and see how you can participate.

Diversity in advertising - some recent thoughts and action

Five years ago, NSW and Victorian families of adults with Down syndrome looked back on the changes they had been part of, for Views from the front lines: more than thirty years of family life, published in Voice (now the journal of Down Syndrome Australia). Their answers to the first question, What is the biggest change you have seen for people with Down syndrome in general? were summarised as ...
“Visibility. People with Down syndrome are no longer confined to family homes into old age. They are out and about – on public transport, in the supermarkets, at the beach, at the movies, on TV and in film.”

“There is a greater acceptance and understanding by the community in general.”

“Many people still have not had any contact with people with Down syndrome and do not realise their potential. People are still amazed that a person with Down syndrome can read, write, use mobile phones and use public transport.”
(Voice, September 2010)

The evolution of the concepts of 'awareness', 'advocacy','inclusion' and 'acceptance', towards greater visibility, more appropriate representation in all forms of media and inclusion in all aspects of life remains a key interest of the Down syndrome community (and those interested in all people with disabilities), and has become the subject of more focussed campaigns and study, as in these very recent examples:

Starting with Julius
You might be aware of this Western-Australia based campaign (it has featured in the Australian Women's Weekly, as well as online) that is part of an emerging international drive (see Changing the Face of Beauty on Facebook).

Its website was launched last week, and includes a new blog well worth reading, with an initial post by Robert Hoge. Julius's mother, Catia Malaquias, advocates on a number of fronts in addition to her focus on advertising - she is interested in  the nature of 'awareness' and advocacy, international rights, and inclusive education, for example.
'We are committed to the equal representation of people with disability in advertising, media and beyond and the use of empowering and inclusive imagery and messages.'

Where Are All the Disabled People in the Body Positivity Campaigns?
Rachel Cohen-Rottenberg, The Body is Not an Apology, 23rd August 2015
... I was shocked when I realized that theories built on an awareness of the devaluation and stigmatization of bodily difference often ignore the category into which everyone might someday fit: disability ... In the popular media, so-called “body positivity” campaigns leave out disability to a remarkable extent. The body about which we are supposed to feel positive is nearly always the able body. That body might be fat or thin, white or black, Hispanic or Asian, tall or short, rich or poor, but it is almost always able ...

What people don't get about the hot model with Down syndrome
Love That Max, 20th August 2015
As the world cheers on Madeline Stuart, the Australian model with Down syndrome who just announced she'll walk the runway at New York Fashion Week, I'm cheering too. Yet I'm also feeling uneasy, because negative perceptions of people with disability are rearing their heads ...

Edit: added 30th August 2015:

Yes, fashion has flirted with using models with disabilities, but it has to do much more if it is serious about catwalk diversity

Hannah Marriott, The Guardian, 30th August 2015
... This handful of examples is a drop in the ocean of a multibillion-pound global industry, but it does represent “some increase” in the use of models with disabilities, says Cat Smith, a doctoral researcher at London College of Fashion. “In general there is real cultural invisibility when it comes to those with disabilities – in fashion, on TV, in film, in politics, in writing,” she says. “So it’s certainly important to see disabled models, because seeing people who look like you is important in fostering empowerment and making you feel a little less invisible. Visibility also creates a more realistic representation and understanding of the lives of people with disabilities ...

Wednesday, 26 August 2015

All the 'Weeks' - it's Hearing Awareness Week, too

In  another very nice coincidence for people with Down syndrome and those who support them, this week is not only Book Week and Speech Pathology Week, but also Hearing Awareness Week (supported by the Australian Department of Health). Many children with Down syndrome experience middle ear infections (with or without effusion), and fluctuating hearing loss, and hearing is critical for the development of speech. People with Down syndrome can experience other forms of hearing loss, including hearing loss associated with ageing that can occur earlier than in the general population. That's a lot of related factors to think about this week - but there's a lot of important information around this week!

NSW Council on Intellectual Disability has posted this week about how speech pathologists can work with people with intellectual disability:

Speech Pathology Week
NSW Council on Intellectual Disability (blog), 25th August 2015
... This week we're celebrating Speech Pathology Week and in true Speech Pathologist fashion, encouraging people to "Talk with Me" about the 1.1 million plus Australians who have a communication or swallowing difficulty that impacts their quality of life ...
How can Speech Pathologists work with people with intellectual disabilities? ...

Tuesday, 25 August 2015

Arts news

Spotlight on arts access and disability
Australian Ministry for the Arts
Note especially the entry on The Australian Chamber Orchestra's 2015 'Move' program.

Emily Crockford
Underbelly Arts Festival, 1st - 2nd August, 2015
Bold, assured and sensual all describe the artwork of Emily Crockford ... `I like painting on fabrics and working with guest artists. I like my own techniques, playing and experimenting with different ideas. I want to be a great artist, and experiment. ́

“Oliver sees details the rest of us miss” – a young photographer’s story
Jennifer Urwin, Scope (UK), 20th July 2015
Oliver is a young nature photographer who happens to have Down’s syndrome ... "I’m very proud when I have an exhibition" ...

'All of us being here can move things forward': Edinburgh's game-changing year for disability
Hannah Ellis-Petersen, The Guardian (UK), 13th August 2015
Disabled performers are pushing for a historic shift at 2015’s fringe – from widening notoriously bad venue access to putting work by artists with disabilities at the heart of the world’s biggest arts festival ...

Creating theatre for people with profound and multiple learning disabilities
Lucy Garland, Scope (UK), 21st July 2015
Frozen Light theatre company started from a very simple idea ... we love going to the theatre so why shouldn’t people with Profound and Multiple Learning Disabilities (PMLD) have the same opportunity?

People with autism and learning disabilities excel in creative thinking, study shows
Tracy McVeigh, The Guardian, 22nd August 2015
Research confirms that seeing the world in ‘a different way’ sparks unique ideas ...

Monday, 24 August 2015

Speech Pathology Week and the SPA 'Book of the Year' awards

In a nice co-incidence, this week is not only Book Week ...
Each year Speech Pathology Australia hosts Speech Pathology Week to make Australians more aware of those in our community who have a speech or swallowing difficulty.

In 2015, Speech Pathology Week is from 23-29 August. In 2015, the theme for Speech Pathology Week is Talk with me.

Visit the Speech Pathology Australia website here, to learn more about how you can participate and benefit from the Talk with me campaign.

The Speech Pathology Australia Book of the Year Awards 
... 'aim to promote children’s books as literacy tools, as well as raising awareness of the role of speech pathologists play in helping children develop language and literacy skills. The awards:
  • promote quality Australian children’s literature;
  • enhance awareness of the role speech pathologists play in language and literacy development; and
  • encourage a love of reading.
... The books nominated all five children’s categories have now been shortlisted ... and winners will be announced on Thursday 15 October at the Book of the Year Awards’ Ceremony at the State Library of Queensland.' ... Speech Pathology Australia

Book Week 2015

The Children's Book Council of Australia (CBCA) is a volunteer run, not for profit, organisation that was established in 1945 and is comprised of ...  members who are passionate about children's and young adult literature. They organise Book Week each year, and the Book of the Year Awards. If you have children at primary school, you will know that this week, 22nd - 28th August, is Book Week (and possibly be knee-deep in book related activities and costumes). This year's Book Week  theme is that 'books light up our world'.

It wasn't so very long ago that it was not generally thought that children with Down syndrome could learn to read, so they weren't taught ... and generally, they didn't! We know much better now, thanks to dedicated families, teachers and researchers, and the hard work of people with Down syndrome themselves, and the world of reading and all the goodness it brings has opened up for many people with Down syndrome.

Throughout the week, we will highlight activities and information about books, and people with Down syndrome on the blog.

These are the 'reading' photos shared with us by families when we first published Dr Kathy Cologon's series of six articles, Teaching reading to people with Down syndrome: busting the myths,  two years ago. The articles are available as a single .pdf download, here or to read as individual blog posts, here:

Friday, 21 August 2015

Weekend reading and viewing: 22nd - 23rd August 2015

The 12th World Down Syndrome Congress in in session in Chennai, India this week. Photos and short reports of the proceedings are appearing on social media, and while there are many serious, substantive information sessions, the first pictures, were, of course of dancing - traditional elephant dances and Bollywood dance lessons, enthusiastically taken up! This UK video was part of the opening session:

World Down Syndrome Congress 2015DSA UK, 19th August 2013
The Congress opened with the world premiere of ‘Langdon Down, The Legacy': a short film about the extraordinary Victorian building in London which is home to DSA UK. Built by Dr John Langdon Down in 1868 as a place where people with learning disabilities could be cared for and educated, it is widely regarded as the ‘spiritual home’ of Down’s Syndrome ...

Mardra Sikora, Huffington Post, 19th August 2015
My son was born in 1990, a time when the TV show Life Goes On aired on ABC weekly. This show, which featured a main character who happened to have Down syndrome, made its place in history, while you personally demonstrated a life of ambition, of possibility, and of self.

Your ambition validated my own hopes for my son, who also has Down syndrome ...

The Other Ramp
Dave Hingsburger, Rolling Around in My Head, 2nd August 2015
... Only someone in the disability community would be able to assess 'welcome'. Only someone who has a disability understands what it feels like when disability is 'unwelcome.'
I said, "The doors are flat and the attitudes are ramped" ...

Explaining Down Syndrome to Children
Pamela Wilson, Bella Online, 12th August 2015
... The first children who may hear a parent's explanation of what Down syndrome is and what it means may be the brothers and sisters of a newly diagnosed newborn. Depending on the age of the older sibling, any new baby taking parents' full attention and time may be seen as an intrusion or unwelcome visitor. It's good to keep in mind that Down syndrome means very little to the brothers and sisters of a newborn, and often babies with Down syndrome are just like babies without Down syndrome to their siblings ...

Golly Gee Willikers
Dave Hingsburger, Rolling Around in My Head, 12th August 2015
... Anyone who has followed my work, or read my book, Just Say Know, will know that I don't like and won't use the term 'vulnerable populations' or ever refer to a specific group of people as 'vulnerable.' I think doing so is kind of a massive linguistic form of 'blaming the victim.' It makes 'something about them' the reason 'something happens to them.' It makes the assumption that a person is, and always will be, vulnerable due to a state of being. The only response to the 'status' of ' one of the vulnerable' is the 'status' of 'the protected.' The term focuses our attention on what we do to protect the forever, and ever, vulnerability of the other. The term focuses our attention away from the fact that 'we, the protector' are also 'we, the abuser' ...
David M Perry, AlJezeera America, 17th August 2015
Everyday technologies that enhance accessibility are far more helpful than miraculous, high-tech interventions ...

A lesson in inclusion delivered to trainee teachers by those who know
Kathy Evans, Sydney Morning Herald, 16th August 2015
Five actors with a learning disability are helping trainee teachers at Deakin University learn about what it is like to be different and what it might mean for the classroom ... Whilst information-based courses assist would-be teachers develop an understanding of what is required intellectually, they do not help them overcome their own deeply-held prejudices or challenge outdated attitudes ...

Blind Kenyan father ordered to leave Australia
Ryan Emery, SBS, 18th August 2015
Doctor Siyat Abdi has joined a long line of migrants who’ve been rejected for a visa because they failed to meet the health criteria. In Kenyan-born Dr Abdi’s case, it’s because he’s blind. For others, including Perth doctor Nora Aziz, it was because their children had cancer or Down Syndrome.

But according to the Migration Act, an applicant must not, even hypothetically, need health care or community service that would “result in a significant cost to the Australian community in the areas of health care and community services … regardless of whether the health care or community services will actually be used.”

Dr Abdi, who has been in Australia for more than 11 years, said it made him angry to be rejected because he was blind. It’s a condition he’s managed for all of his 47 years ...
Farewell to Jane Fraser AM
NSW Council on Intellectual Disability (blog), 20th August 2015
We lost an outstanding advocate for people with disability with the death of Jane Fraser in May. Jane was one of the leaders amongst the parent advocates who became very vocal in the 1980s in pursuing a good life in the community for all people with disability ...

Recent issues of online newsletters

Free online subscriptions are available for each o these publications:

Down Syndrome News, Vol 38 #2, Summer 2015
(US) National Down Syndrome Congress
  • A Remarkable Woman
  • Siblings. Brothers and Sisters.
  • An Uncomplicated Life (extract)
  • 10 Defusing Phrases to Use at IEP Meetings
  • Self Advocate Corner: Doug McBride
  • Inclusion: Celebration of Diversity in Action
  • Infantile Spasms in Children with Down Syndrome: Investigating a Rare but Serious Condition

NSW CID e-news, August 2015

Accessible Arts News: August 2015

Crucial Times, #49, July 2015 - articles on the theme of friendship

Service, Support and Success (The Direct Support Workers' Newsletter) Volume 4-Issue 8, August 2015

Thursday, 20 August 2015

Resources, publications

This information is reprinted from NSW CID eNews, August 2015:

Forgotten and Found, by Kim Walker
Forgotten and Found, written by NSW CID Life Member Kim Walker, tells her story from childhood, to institutions, to community life and to becoming an amazing advocate!

Kim tells us the story of her life to explain why no child should grow up in an institution and separated from family. Kim’s story provides a powerful case for what she always wanted – all disability institutions to be closed and all people with disability to have a good life in the community.

Click here if you would like to order a copy of the book.

Online recording of social policy debate on supported decision making
On the 11th of August, the Social Policy Research Centre at UNSW held a debate on supported decision making for people with disability. Click here to find out more about this debate, and click here to listening to a recording of the debate.

Nominations open for Down Syndrome NSW Board for 2016

Down Syndrome NSW members - it is now time to submit your nominations for the Board of Down Syndrome NSW. All nominations will be collected and a vote will be conducted at this years Annual General Meeting to be held on 18th October 2015, at Parramatta

Please download and print your nomination form and follow the instructions.

Please send your completed nomination via email to
or by post:

Down Syndrome NSW
C/- Tracylee Arestides
PO Box 107

All nominations must be received by the appointed Returning Officer by 5pm EST Monday 14th September 2015.

If you need to renew your membership, you can do it online on our website now.

Wednesday, 19 August 2015

News and commentary on the NDIS (36)

The National Disability Insurance Agency (NDIA) is proud to host 
NDIS New World: Disability in the 21st Century Conference and Trade Show to be held at the Brisbane Conference and Exhibition Centre from 27-29 October 2015.

This groundbreaking conference will be a dynamic exchange between people with disability, technology experts, entrepreneurs, policy makers and service providers, along with a vibrant exhibition and trade show and top national and international speakers.

NDIS Newsletter, July 2015

Disability Loop Newsletter #5.2, July 2015

Disability Loop Newsletter  #6 August 2015

Every Australian Counts News Hub
You can catch up with news from the Every Australian Counts campaign for the implementation of the NDIS here, and/or subscribe to weekly news updates, distributed by email

Easy English fact sheet on the Ombudsman and the  (NDIS)
NSW CID eNews, August 2015
The NSW Ombudsman has released an Easy English fact sheet on the Ombudsman and the National Disability Insurance Scheme (NDIS). The fact sheet includes information on how to complain about a service, what you can complain about, who can complain, what happens when you complain, and whether you can complain about the National Disability Insurance Agency (NDIA) to the NSW Ombudsman. More information and fact sheet download.

Carers and the NDIS Survey
Carers Australia
Please complete this survey if you are a family or friend carer that provides unpaid care and support to a person with disability who has a National Disability Insurance Scheme (NDIS) support plan. We would be very interested in your feedback on your experiences with the NDIS.

Carers Australia has been funded by the NDIS Sector Development Fund to collect feedback on how the NDIS is impacting on family and friend carers.

The Implementation of the NDIS: Who Wins, Who Loses?Jenny Green and Jane Mears, Cosmopolitan Civil Societies Journal, Vol.6, No.2, 2014
The National Disability Insurance Scheme, well into its pilot phase with bipartisan support, looks clear to be the future of support for Australians with disability. This paper takes a timely review of key research and reports, analysing the potential benefits and disadvantages of the person-centred approach on which the scheme is premised. It addresses these through the frame of services, employees and people with disability in the Australian context. Whilst there are potentially overwhelming benefits there are also potentially major losses ...

NDIS in the media

More people benefitting from the NDIS
Senator Mitch Fifield's media release on the NDIS Quarter 4 (2014-15) report, 17th August 2015

17,300 People on NDIS
ProBono News Australia, 18th August 2015
... People with Disability Australia President, Craig Wallace, told Pro Bono Australia News that he was satisfied with the progress made this quarter, “despite some of the early alarm that we saw 18 months ago and talk that the scheme wasn’t on track to meet targets”.

“The scheme appears to be moving closer to the bilateral target, the costs are on track and the struts of the scheme seem to be moving into place as expected,” Wallace said ...

Govt moves to quash rumours of 'Razor Gang' cuts and delays to NDIS roll-out
Peta Donald, The World Today (ABC Radio), 18th August 2015
The Federal Government is insisting today that it has no plans for cuts or delays to the multibillion dollar National Disability Insurance Scheme (NDIS) ...

Don’t mess with the NDIS
El Gibbs, Blunt Shovels, 18th August 2015
... The genesis of the scheme – what was that again? Oh yes, I remember. That would have been the Shut Out report, then the Productivity Commission hearings and report, and the Every Australian Counts campaign. The reports that so many people poured their heart and soul into. The ones that said that the NDIS was needed to stop a blow out in support costs, and to restore some basic rights and dignity to disabled Australians. Yes, that genesis.

And complexity? The NDIS is a market-driven system, where individuals are able to buy the supports they need in a competitive environment. Now, if that’s not right up a Coalition government’s alley, I don’t know what is. But just in case, here’s an explainer I prepared for the Treasurer earlier ...

Stop, go back, the NDIS board shake-up is going the wrong way
Simon Darcy, The Conversation, 31st July 2015
For any public policy reform to be successful, it needs to be appropriate, effective and efficient. At the heart of achieving such an outcome is good governance. This requires a balance of more than business skills and an understanding of the insurance industry.

The balancing of skillsets on the NDIA board requires an understanding beyond the corporate sector. There, the business of disability is only one part of the equation. Fifield must understand that any change to the board should be true to the underlying philosophy of the UN Convention on the Rights of Persons with Disabilities and the desires of people with disability to have a say in their future ...

Big hopes NDIS will deliver jobs and services to Aboriginal people in remote areas 
John Stewart, Lateline (ABC TV), 30th July 2015
... One solution to getting the NDIS into remote areas is to have service providers employ local people. The Aboriginal Disability Network said the NDIS was likely to create a jobs boom in the disability sector, and many of the jobs could be done by Aboriginal people.

But Ms Riemer said that would depend on whether or not the disability service providers were prepared to train Aboriginal staff ...

Celebrate Down syndrome Awareness Week with us!


Step Up! for Down syndrome is an event to bring people together in their local areas, celebrate the achievements of people with Down syndrome and raise funds.

This year there are five events state wide, including Nowra for the first time. Regardless of if you are fundraising or not we would love to see you there, so put the date in your diary and join us for a day of fun!

Registering to attend your local event is easy. Just click on the below link (for your preferred event) and follow the prompts to sign in.

If there’s not a StepUp! event in your area and you’d like to organise one, give us a call and we’ll help you get started (and give you all the support you need to organise a great day).

SYDNEY - Sunday 25 October 2015 
Parramatta Park, Parramatta

NOWRA - Sunday 18 October 2015 
Moona Moona Creek, Huskissons

WAGGA - Sunday 18 October 2015  
Collins Park, Corner Forsyth and Thorne Street, Wagga

PICTON - Sunday 01 November 2015 
Picton Botanic Gardens


StepUp! is about connecting, celebrating and fundraising. In addition to joining us on the event day, we hope you will choose to do some fundraising for us too. Once you register, the fundraising part is as simple as sharing the link that your sign in generates for you. Personalise the page with photos and stories and share with your friends.

If you’re not up to walking, you can still participate as we’re also looking for volunteers to help manage the day. If this interests you, please email us at

We’re looking forward to Step UP! for Down syndrome 2015 and are excited about reaching our fundraising goal of $60,000!

We look forward to seeing you sharing in the fun and excitement at one of these events.

See you there!
Sarah, Ben and the Down Syndrome NSW Team
Phone: 02 9841 4444 | Email:

Tuesday, 18 August 2015

New blog: 'The life that Max built'

Alex McAuley's blog The Life That Max Built is a new and very welcome addition to the scene - beautifully written, candid, funny ... she aims to reassure newer families that life will be good, without shirking the bits that will hard, and strikes just the right note. Max is 22, and one of four boys, so Alex and Max have a lot of well-considered experience to share.

(In addition to regular blog posts, the as-yet undeveloped pages 'Dancing to the Max' and 'Pottery to the Max' hold promise of other delights. If you can't wait, you can read a little more about Max here.)

Just three posts in, this one is going on the 'Blogs we read' list (scroll down the column on the right of this page) and into the blog reader so that no post is missed. It deserves to be shared around.

Two sobering international stories ...

The week of the 12th World Down Syndrome Congress is a good time to highlight that people with Down syndrome live everywhere in the world, in many different environments and circumstances:

Australians supporting people with Down syndrome in the wake of the Nepal earthquake
Down Syndrome Australia's  news page, 16th August 2015
Down Syndrome Association of Nepal has written a thank you letter to Down Syndrome Association of Northern Territory for collecting donations for them after the devastating earthquakes in April and May this year. The letter outlines what the funds were used for, and we have provided information for you if you would like to help too.
.... Now as life is coming back to normal and relief needs have been met to some extent with national/international help, thanks to it. Our concern now is to look into the ignored long term sustainable development of society and help people both family and children with Down syndrome to regain means of livelihood, e.g. small vegetable farming, local sweet making and also look for market to the produce ...
If you would like to make a donation to Down Syndrome Association of Nepal, visit the donation page on their website. You can also volunteer with them. Alternatively, you can make a donation to Down Syndrome Association of Nepal via the Down Syndrome Australia donate page. Just make a note that you would like your donation to be forwarded to Nepal.

Miracle Ali’s Nightmare at Sea
UNHCR Tracks, 14th August 2015
Just 40 days old, a boy with Down’s Syndrome may never remember his journey to Europe. His parents will never forget it ...
There is a link at the top of the UN Refugee Agency (UNHCR) page to ways to support the Agency.

Monday, 17 August 2015

12th World Down Syndrome Congress, Chennai, India: this week

From Down Syndrome International:
We are excited and looking forward to welcoming you to Chennai, India for the 12th World Down Syndrome Congress 19 - 21 August.

If you are not able to be at the Congress in person, you can follow us on social media where we will be sending updates during the proceedings of the Congress. 

Business Services Wage Assessment Tool (BSWAT) Payment Scheme: registration now open

From disAbility e-news, Department of Social Services, Special edition, 12 August 2015:

Business Services Wage Assessment Tool Payment Scheme update

The Business Services Wage Assessment Tool (BSWAT) Payment Scheme (the Scheme) is now open for registration and application.

The Scheme will provide a one-off payment to eligible supported employees of Australian Disability Enterprises (ADEs) who have been paid a pro-rata wage assessed using BSWAT. The Payment Scheme is entirely voluntary, and participants are required to seek independent financial counselling and legal advice, paid for by the Government (subject to limits), to help them make an informed choice.

To be eligible for the Scheme, a person must have, for at least one day in the period starting on 1 January 2004 and ending on 28 May 2014:
  • had an intellectual impairment, which includes an intellectual disability, autism spectrum disorder, dementia, or impaired intellectual function as a consequence of an acquired brain injury been employed and provided with employment support by an ADE 
  • received a wage based on a BSWAT assessment, or received a training wage while waiting for a BSWAT assessment. 
Other eligibility conditions are that:
  • the person required daily support in the workplace to maintain employment in the ADE; and 
  • the person has not accepted an amount of money in settlement of, or the court has not ordered payment of an amount of money to the person in connection with, a claim made relating to the use of the BSWAT to assess the person’s wage. 
All eligibility criteria have to be met for individuals to access the Scheme.

You must register to take part in the Scheme. Registering for the Scheme does not guarantee that you will be eligible for the Scheme or that you will be made an offer of payment under the Scheme.

A person can register for the BSWAT Payment Scheme, or find out more information by:

Visiting the DSS website at:

Phoning the BSWAT Hotline on 1800 880 052


More information about the the current status of other aspects of the reform of wages in Australian Disability Enterprises can be found in disAbility e-news, Department of Social Services, Issue 221, 28 July 2015:

Friday, 14 August 2015

Weekend reading 15th - 16th August 2015

The words I don’t need anymore 
Sipping Lemonade, 10th August 2015
I spent some time today — procrastinating (let’s call it was it is) — cleaning out the “bookmarks” in my web browser.One particular folder I came across was labeled: “Down syndrome ” ... 
Kari Wagner-Peck, A Typical Son, 4th August 2015
... Is it really a leap to consider Cenac might believe that people with Down syndrome are losers who also may not have anything to live for? Otherwise why in his altered state is he suddenly talking in a “funny voice” and believing he just developed Down syndrome? Something informed that hallucination. Those thoughts did not randomly collide, they came from somewhere in Cenac. In other words did a pot brownie free his mind?
It also squares with what most people think of individuals with Down syndrome. It is such a compelling belief that there are existential consequences reflected in the fact most fetuses detected with Down syndrome result in abortion ...
Embracing labels to shape our identities
Carly Findlay, 3rd August 2015
Labels. They’re a blessing and a curse to live with. Fat. Thin. Beautiful. Ugly. Smart. Stupid. Rich. Poor. Athletic. Lazy. Normal. Different. Disabled. Able bodied ..
... Giving myself the labels of ‘disabled’ and ‘chronically ill’ has been very empowering. I feel great sense of belonging – and that’s as big a relief as a diagnosis is. It’s given me pride. I am proud to belong to an amazing, talented, diverse, passionate community that’s committed to improving the lives of others. It’s also given me the courage to speak up and say I can’t do something because of my body’s limitations, and call out discriminatory behaviour ...
The Easy Choicelessness of the Non-Disabled
Dave Hingsburger, Rolling Around in My Head, 11th August 2015
... "I saw what you did there, you almost asked for help." She blushed and laughed, "You saw that?" I said that I had seen it and that I only noticed because sometimes I have to decide to be disabled or not. "My mom still makes my bed," she said and began to laugh, in seconds we were both howling as I understood the implication of her statement ...
Inclusive education means all children are included in every way, not just in theory
Kathy Cologon, The Conversation, 12th August 2015
Recent articles on The Conversation and in The Guardian question whether inclusive education can do more harm than good – but neither article presents examples of inclusion. Rather, they present tragic examples of exclusion that are claimed to be inclusion-not-working ...
What I See When I Look At My Daughter - Raising a Child with Special Needs
Jodi Shenal, 3rd August, 2015
Having a daughter with special needs has changed the way I see most things in this world. Aside from softening my heart and strengthening my spirit, she has given me the gift to see past life’s everyday imperfections. The trivial things that before could destroy a perfectly good day, are now easily shaken off and insignificant. Since she came along, I’ve begun to see a multitude of things in a different light ... 
I wish I could convey to her and to the world what I see when I look at my daughter ...

Hotel training makes room for learning disabled people at work
Nicola Slawson, The Guardian (UK), 4th August 2015
From the familiar purple decor to the signage encouraging guests to re-use their towels, if you stepped into the immaculate bedroom at Derwen College, you’d be forgiven for thinking you were actually in one of the thousands of Premier Inn hotels up and down the UK. In fact it is a fully functioning replica bedroom that has been cleaned and prepared by learning disabled students ...

Latest additions to 'events' pages

Down Syndrome NSW events

Older Parent Network Event 
Wednesday 19th August - Parramatta Park Event Centre, Parramatta Park
Saturday 22nd August  - Mary Mckilliop Place 7-11 Mount StNorth Sydney 

Estate Planning Seminar
Saturday 12 September 2015 - North Parramatta

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.
Sydney Opera House - Oddysea is a highly specialised, hands-on, interactive theatre experience for young people with special needs including those with multiple disabilities. Children will experience tactile, hands-on story where touch, taste and smell are as important as sight and sound. Recommended for children 5 - 8 years of age
Saturday 22nd August 2015 - Sydney

Relationships and Private Stuff events
Social events and courses about relationships for people with intellectual disability
August - October 2015 - Burwood, Granville, Winmalee

My Choice Matters events
August - September 2015 - across NSW

Bodylines Ensemble - set in a futuristic school-scape where the enforcement of rules borders on controlling, where self-expression is disallowed, and sameness is the status-quo, the Shopfront Inclusive Bodylines Ensemble present their explosive new live performance work, Out of Line, a remarkable bringing together of over 30 young people with disability from across South East Sydney.
12 noon and 7 pm 27th and 28th August 2015 - Australian Theatre for Young People, Walsh Bay

The two-year Catalyst Dance Residency Program 2015 - 2016 call for 'Expressions of Interest' is now open nationally to all dancers with and without disability, and closeThursday 3 September 2015 at 4pm.
Key residency dates: 
Year One 2015 - Sunday 11 October – Saturday 17 October - Sydney
Year Two 2016 - Monday 15 August – Saturday 20 August - Sydney 

Smiles for Life: Oral Health Matters
A half-day program (8am to 1230pm) program that consists of presentations given by a Paediatric Dentist, Dietician and a team of Oral Health Therapists that focus on general dental knowledge, targeted oral hygiene and dietary advice, and behaviour management strategies when providing oral care. For family members, carers, teachers, nurses and support staff who care for young peopleThe morning also includes a free morning tea and hands-on workshop. Numbers are limited and registration is essential. Contact Smiles for Life on 9845 7423 or by email
Monday 7th September 2015 - Westmead

All About Us
NSW Council for Intellectual Disability - a social group for young people with intellectual disability aged16-26. In the group people will chat about what is important to them and what they might want to change about their lives and communities. People who come will also have a chance to learn about the NDIS and how it affects them. You will also makes new friends in a safe space. The group is free to attend. If you need any support to attend the group we can help. If you want to come please call Brandon on 9211 1611 or email
First meeting: 8th September 2015 - Penrith Library Theatrette

Employment 101 for Direct Payment Agreement Participants 
Ashurst Australia - seminar on the legal issues that Direct Payment Agreement participants should consider when deciding how to engage carers and support workers. For DPA participants, prospective participants, nominees, carers and support workers. RSVP by Friday 4 September. For enquiries, contact Shiranee Pararajasingham on 02 9258 6240 or
10th September 2015 - Sydney

Intellectual Disability Health Network Annual Forum
NSW Agency for Clinical Innovation
10 September 2015 - University of Technology, Sydney 

The Right Foot
DirtyFeet - creative dance workshops for people with and without disability between the ages of 14 and 26 years, providing a creative activity for those who may otherwise not have access to dance.Free, limited places. Registration is essential.
10am - 1:30pm, 12, 19, 26 September and 3 October 2015 - Glebe

Northcott - a community walk through Parramatta for people, with and without disability, across western Sydney to raise awareness and support inclusion. Starting at Prince Alfred Park at 11am, the walk will progress through the heart of the Parramatta community and surrounding businesses, finishing at Centenary Square. There will be entertainment, information and food stalls between 12 and 2pm on the day.
Wednesday 16 September 2015 - Parramatta

Thursday, 13 August 2015

Launch of new NSW CID website

NSW Council on Intellectual Disability is excited to announce the launch of a new website. A new and improved design layout will ensure ease of access for everyone who is looking for information on all facets relating to intellectual disability.

Screen shot from the new home page
One of the first things you will see on the new home page is a link to information from the We Are Worth the Investment conference held in Sydney in July. You can read/download the presentations from the 2 days.

The NSW Council on Intellectual Disability is the peak body representing the interests of people with intellectual disability in NSW.

Library Shelf: new title

Active Support: Enabling and empowering people with intellectual disabilitiesby Jim Mansell and Julie Beadle-Brown
Active Support is a proven model of care that enables and empowers people with intellectual disabilities to participate in all aspects of their lives. The authors provide a comprehensive overview of Active Support and how it can be used in practice, based on the theory and research underpinning the methods involved. They describe how to engage people with intellectual disabilities in meaningful activity as active participants, and look at the communication style needed to foster positive relationships between carers and the people they are supporting. Highlighting the main issues for those trying to put Active Support into practice, they explain what is needed on a day-to-day basis to support the implementation, improvement and maintenance of the approach, along with possible solutions for the difficulties they may encounter. Finally, they look at how to integrate Active Support with other person-centred approaches, drawing on examples from various organisations and individual case studies. (Publisher's note)
Down Syndrome NSW members can contact Jo in the library via email to arrange a loan. The Down Syndrome NSW library catalogue is available to view here.  

Wednesday, 12 August 2015

Research news and commentary #6 for 2015

First Crnic Institute Graduate Fellowship Awarded
Global Down Syndrome Foundation, August 2015
... Last week, the first Blumenthal Graduate Fellowship in Down Syndrome was awarded to Amber Sorenson. The fellowship is designed to create a pipeline of excellent investigators engaged in Down syndrome research. Candidates are evaluated on the strength of their proposed science and the likelihood such science will lead to improving outcomes for people with Down syndrome ...
Medical Express, 3rd August 2015
New brain research has mapped a key trouble spot likely to contribute to intellectual disability in Down syndrome. In a paper published in Nature Neuroscience, scientists from the University of Bristol and UCL suggest the findings could be used to inform future therapies which normalise the function of disrupted brain networks in the condition ...

Quantifying Nutrition and Weight Management Challenges with Possible Solutions for Individuals with Down Syndrome 
Caitlin Woglom et al, July 2015
Conference poster presented at Down Syndrome Medical Interest Group meeting in Phoenix, describing four projects conducted by researchers at Massachusetts General Hospital, Down Syndrome Program, Boston and Harvard Medical School.

Dying to Talk - invotation to participate in research
The Dying to Talk project is working out whether a training program delivered to community living staff helps them to have conversations with people with intellectual disability about the end of life. We are checking this by researching with both community living staff and people with intellectual disability. We need to compare people who have received the training program to those who have not (called a comparison group). We are now looking for people to be in the comparison groups.

The researchers are from Sydney University. Contact Michele Wiese on 02 9036 7418 or

Information about two further opportunities to participate in research at Macquarie University and University of Sydney are in this recent post.