Address details

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

Monday, 30 November 2015

Love, intimacy and disabiity

We are increasingly hearing about people with Down syndrome and other disabilities in long term and intimate relationships, and/or getting married, but it can still be a difficult need to meet:

The barriers to romance for adults with disabilities
Chris Serres, Daily Life, 24th November 2015
... For people with disabilities like Rachel and Nicholas, such freedom to be intimate is rare. Disabled adults complain of having to overcome constant hurdles to engage in romantic activity and sustain loving relationships. The obstacles include arbitrary curfews, lack of transportation and segregated housing that cuts them off from mainstream social life and opportunities to date. Often, the barriers are imposed by group home operators that place safety above intimacy ...

Here comes the bride
Carly Findlay, Don't DIS my ABILITY (blog), 26th November 2015
I will be a bride in March. Although my parents encouraged me to be anything I wanted to be, I never thought I'd be a bride. I tried dating for many years, but it was hard to meet a man who was ok with my severe skin condition – Ichthyosis ...

... Outsiders often view getting into a relationship as the Holy Grail for people with disabilities. They see it as a big achievement, because disability is often portrayed as undesirable, unattractive even. Love is, in my experience, sometimes harder to come by because of disability, but not impossible ...

Friendship - A guide to finding friends and building community
Kay Mills, Centre for Welfare Reform (UK), 2015
Kay Mills is one of the leading experts in the UK in how to help people with learning disabilities overcome the risk of social isolation - by getting friends, building community and finding love. This guide is easy to read and packed full of good advice and inspiring stories.
Too little attention has been paid to love, friendship and community in the lives of people with learning disabilities. Instead organisations focus on housing or support services, but fail to deal with much more important issues of the heart and spirit. This is the next big challenge ...

What now: responses to abuse and neglect reports

We count what matters, and violence against people with disability matters
Anne Kavanagh and Sally Robinson, The Conversation, 27th November 2015
The Senate inquiry into violence, abuse and neglect against people with disability heard many horrific stories of violence experienced by adults and children with disability. They experience violence at the hands of intimate partners, parents, informal carers, service providers, teachers, medical professionals, co-residents in institutional settings, and others ...

(The photograph at the top of this article is of Jackie Softly, 
long-standing member of Down Syndrome Western Australia, 
and national advocate.)

The abuse of people with disability is a national shame that we're ignoring
Rachel Siewert, The Guardian, 26th November 2015
Right now there is a national shame hanging over our communities regarding treatment of people with disability in Australia. We would like to think that the notion of widespread violence, abuse and awful mistreatment would disgust the broader community and prompt us into action ...

Damning disability abuse report uses ACT death as warning
Christopher Knaus, Judith Ireland and Rachel Browne, The Canberra Times, 26th November 2015
A damning report on the neglect and abuse of people with a disability has used the choking death of Canberra woman Stephanie Fry to warn of the dangers of staff turnover and the increasing reliance on casual support workers ...

Friday, 27 November 2015

Weekend reading and viewing 28th - 29th November 2015

Curing Down Syndrome?
Mark Bradford, Lejeune Foundation (blog). 10th November 2015
... (he) is not alone in regretting that he has to live with Down syndrome, but often the voices of those who long for treatments that would improve their cognitive capacity are lost among the voices of advocates working to further acceptance and inclusion. Some parents and other advocates deny that Down syndrome is a genetic anomaly and insist it is a natural part of human variation. Some reject the efforts of research to improve cognition, claiming that it is a form of “positive eugenics.” 2 Others fear that a drug to improve their child’s cognition will change their child’s personality that they have come to love deeply. There is little possibility that would happen ...

The outstanding men in Max’s life
Alex McAuley, The Life That Max Built, 17th November 2015
... I know the old saying goes that it takes a village to raise a child; well yes, a village would have been grand, but under the circumstances, I’ll take the family ...

Australia denies tourist visa because of Down Syndrome
Suresh Rajan, The Stringer,  21st November 2015
... As though I needed any further proof of the (Department of Immigration and Border Protection's) culture of complete insensitivity and, in some cases, blatant bias against people with disability yet another case of this has come to light ... our department starts from the basis that anyone coming to this country as a visitor WANTS to overstay their visa. What an incredibly blinkered view of the world. We can but hope that somewhere there is someone who will launch an inquiry into the “culture” of this department ...

My son doesn't want to say hello: disability awareness and taking the day off
Mary Eveyn, What Do You Do Dear? 25th November 2015
... my son doesn’t want to say hello. It feels weird. It also feels right. We can’t be “on” at every moment ...

Accommodation for people with disabilities and the NDIS: submissions invited

The House of Representatives Joint Standing Committee on the NDIS is now looking at housing and the NDIS, submission are open, and hearing dates for 2016 are being planned:

Joint Standing Committee on the National Disability Insurance Scheme: Accommodation for people with disabilities and the NDIS

As part of the committee’s review of the implementation, administration and expenditure of the National Disability Insurance Scheme (NDIS), the committee will examine the issue of affordable and appropriate accommodation for people with disabilities. The committee noted in its most recent report, that the lack of adequate accommodation can limit people’s ability to fully exercise their individual choice and control. It can also limit people’s ability to fully participate in society and live an ordinary life like any other Australian.
On 23 October 2015, the committee conducted a roundtable hearing in Canberra on housing. This was the first part of the committee’s inquiry into accommodation for people with disability. The transcript of the roundtable hearing is available.

The committee is now calling for submissions on the issue of accommodation that address possible solutions, innovations, pilot programs and, in particular, possible funding models.
The committee will hold hearings in 2016 with dates to be advised.

Thursday, 26 November 2015

News and opinion from the wider disability community

2015 National Disability Award winners - announced 25th November 2015
Congratulstions to the award winner. My Choice Matters, a program in which the NSW Council for Intellectual Disability is a partner, won an award for Excellence in Community Accessibility.

Benevolent Ableism: When Help Isn’t Helping
Dale Di Leo, 8th July, 2015
... The challenge of benevolent ableism is that those who perpetuate it are well-meaning, caring folks who feel their actions are improving the lives of people with disabilities. But, unfortunately, efforts to help do not automatically equal actual improvement of lives. What are the problems? ...

Employing people with disability is good (for business)
Graeme Innes, Blue Notes, 25th November 2015
... data shows employing people with disability is not just the right thing to do, it makes good business sense.

We would all be better off if more people with disabilities were employed. Research from Deloitte indicates an increase in employment of people with disabilities from 54 per cent to 64 per cent would boost Australia's GDP by $A40 billion over ten years. To put that another way, this would more than cover the costs of the government's National Disability Insurance Scheme ...

Australia Denied Full Time Disability Discrimination Commissioner 
Xavier Smerdon, Pro Bono News, 16th November 2015
Australia will be without a stand-alone Disability Discrimination Commissioner for at least another eight months, Attorney General George Brandis has announced ...

Calls for child sex abuse royal commission to investigate sterilisation
Aisha Dow, The Sydney Morning Herald, 16th November 2015
The Royal Commission into Institutional Responses to Child Sexual Abuse is being urged to investigate the forced sterilisation of children, amid concerns young people with a disability are at much of higher risk of being sexually abused ...

Destroy the Joint, sure, but feminism must include disability politics
Katie Ellis, The Conversation, 24th November 2015
The sometimes uneasy relationship between feminist groups and disability activists was highlighted last weekend, when online Australian feminist group Destroy the Joint (DTJ) blocked and banned a number of high-profile Australian disability activists, claiming the women were in breach of their rules ...

Tabled in Parliament: report of the Senate inquiry into violence, abuse and neglect of people with disability

The report of the Senate inquiry into violence, abuse and neglect of people with disability in institutional and residential settings.was tabled in the Senate yesterday (25th November 2015).

The committee found that violence, abuse and neglect was so widespread it has called for a Royal Commission and made 29 other recommendations on things that need to change.
... The committee finds that violence, abuse and neglect of people with disability is both widespread and takes many forms. This inquiry has not shied away from the fact that the causes, the impacts and the solutions to this issue are complex and there is no easy fix. As one submitter wrote, these issues make people feel uncomfortable and most would prefer to take the easy option and pretend that nothing is wrong. But the reality is far different - the situation for people with disability is unacceptable. Throughout this inquiry, the evidence presented from people with disability, their families and advocates, showed that a root cause of violence, abuse and neglect of people with disability begins with the de-valuing of people with disability. This devaluing permeates the attitudes of individual disability workers, service delivery organisations and most disturbingly, government systems designed to protect the rights of individuals ... Executive Summary of the report.

Wednesday, 25 November 2015

National Disability Strategy: the bigger policy picture

In your dealings with various bureaucracies, do you ever wonder if various departments and systems ever talk to each other? We have a national policy that says they should.

The NSW Council for Intellectual Disability is meeting with government and individual politicians in Canberra this week, on a range of issues. One of them is the National Disability Strategy, about which NSW CID said this, on Facebook on 18th November:
The National Disability Strategy is a key policy that aims to get all government systems , community and business working more cohesively so that all people with a disability can participate as equal citizens. 
The NDIS is just one part of it - the strategy also covers justice, health, education, transport and employment. See more on the NDS here.

In a new report, writer El Gibbs looks at the lack of progress on the NDS and what this means for not only the National Disability Insurance Scheme (NDIS) but also for people's health and well being.

With a progress report on the NDS now overdue, CID continues to be alarmed at the lack of progress on the strategy. CID will be taking this issue up when we meet with government and politicians next week in Canberra.
CripCroakey: high time for political will and progress on the National Disability Strategy
El Gibbs, Crip Croakey, 18th November 2015
When it comes to disability policy in Australia, all eyes are on the National Disability Insurance Scheme.

But ... the success of the NDIS relies on the less well known National Disability Strategy, which is running behind schedule and seen important targets slip away because of changing priorities of governments of different stripes ...

Recent news and commentary on education and schooling

Genevieve. Shaw Brown, ABC News (US), 17th November 2015
... in Chris Ulmer's classroom, the day starts off with 10 minutes of compliments ... (he) takes the time to pay several compliments to each and every one of the eight students in his special education classroom ...

Imagining more for all students
Emma Macdonald, Canberra Times, 18th November 2015
Jan Kruger has four children with unique personalities, needs and desires. That her youngest son, Jack, has a disability does not mean he should have less access to education, social and employment opportunities than his siblings ...

Let’s Get Rid of Special Education [Opinion]
Tim Villegas, 3rd November 2015
Why would someone have a problem with students with disabilities being educated side by side with their non-disabled peers? For those of us who are involved in special education, or those who have observed student learning, it is easy to see that inclusive classrooms work. For almost everyone else, it appears to be a near-impossible concept to grasp ...
Boston Globe, 20th November 2015
On a brilliant and blustery October morning, American International College student Aidan O’Donoghue was enjoying a quintessential freshman experience. In the dining commons, he gobbled down a salad, a glass of chocolate milk, and two cookies. He made a new friend, a fellow freshman, and invited him to play Ping-Pong.

Not long ago, the simple pleasures of campus life would have been out of reach for O’Donoghue, 19, because he has Down syndrome ...

Tuesday, 24 November 2015


Portals to Encounters
Promotional video for the launch of new website for a northern NSW arts organisation. (3m 52s)
Sprung, 21st November 2015

Daly Mail Australia, 25th October 2015
One of the artists has one of her paintings hanging in Prince George's bedroom. One has had his cartoons exhibited at London's Tate Modern.  Another is a Sydney teenager who has been painting for just 18 months but is now selling works around the world.

They are among a collective of 26 artists from the around the world whose works are about to go up for sale in an exhibition ... on Fifth Avenue in New York ...

4 Artists You Need to Know
Kelle Hampton, Enjoying the Small Things, 22nd October 2015
... If we can ...  provide more learning opportunities, facilitate in any way we can to increase the chance of employment and independent living so adults with special needs can have the most fulfilling life possible, that gaping hole of need closes a bit more.

One more way we can address this need is in shifting our consumer habits. We flip through catalogues, search websites, browse shops and scan Etsy for gifts, pretty things for home and art for our walls. If we transferred that buying over to artists with special needs who depend on selling a few pieces a month to help pay for apartment rent or groceries or dinner out with a friend–money that makes them recognize the importance of their contribution in the world? Then we’ve completed a circuit. Full circle, everybody wins ...

Moving Picture: Photographer with Down syndrome sells artwork
Daily Herald, 4th November 2015
Short video about the photography of Geoffrey Mikol

Northern Star, 23rd November 2015
Byron Youth Theatre's dynamic new production "Outspoken" will soon showcase the talents of six young people with disabilities in an innovative performance that explores themes of inclusion, belonging and identity ...

Lydian's Space - Creatability Project
ABC Open, 23rd November 2015
In Lydian’s Space you will meet two big personalities. Lydian Dunbar is a music artist in a sensational electronic experimental pop band Tralala blip. Alex Lyngaas is a travel show personality who was visiting Australia from Norway and just happened to be living one street down from Lydian’s house in Bangalow, NSW ...

Pottery to the Max (on The Life That Max Built)
... This young man who, supposedly, has a disability, produces ceramic pieces that are outstandingly beautiful ...
New commissions give artists with disability centre stage
Performing Arts Hub, 10th November 2015
With the announcement of its 2016 Artistic Program, Carriageworks is giving artists with disability centre stage ...

Better Start Early Days: webinar dates December 2015 - february 2016

A program of webinars (online seminars or workshops) is a new initiative from the Better Start for Children with a Disability program:
... These interactive webinars have been developed to support parents of young children with disability navigate to the disability services environment. 
Participating in these webinars will help you to learn about and share information, tools, strategies and resources to help you in the early years of your child’s life. They will provide information about the Government’s Better Start Initiative and National Disability Insurance Scheme (NDIS) and how these can be used to benefit your child. 
Each webinar is 60 minutes long with materials available for pre-webinar reading and activities. Facilitators and guest speakers can be available for extended “chat” time after the webinar ...
Details on how to register and participate, and dates between 8th December 2015 and 16th February 2016 are now available at the Better Start website, here. Webinars will be repeated in 2016.

This program is funded by the Australian Government Department of Social Services. It is run by the First Step Alliance, which includes some Australia's most respected national disability organisations, including Down Syndrome Australia.

Monday, 23 November 2015

Call to support South Australian specialist health service

NSW Council for Intellectual Disability's Senior Advocate, Jim Simpson, has asked that we distribute this information, in support of a service in South Australia, that could have implications nationwide:
South Australian Government proposes to close vital Intellectual Disability health service! 
The closure of the only intellectual disability health service in South Australia would be a disaster for South Australians with intellectual disability and a terrible precedent for the rest of Australia. 
Please sign this petition.

Adele Horin

Sad news over the weekend of the death of journalist Adele Horin, at 64. Adele often wrote about social justice on the ground, including bringing to light stories about the lives of people with disabilities. As a Sydney Morning Herald columnist and as a blogger, she reached a wide mainstream readership, presenting her observations and opinions empathetically and plainly.

She did not just present problems, but put forward sensible, well considered options for solutions, while drawing attention to where responsibility lay for meeting the needs she often highlighted. Her voice, and the voice she gave to others will be sadly missed.

Writer Adele Horin dies after battling cancer
Stephanie Gardiner, Sydney Morning Herald, 22nd November 2015
... "She spent enormous time and effort unpacking complex social issues, giving voice to people and communities who otherwise go unheard.

"At a time when so much journalism is reduced to black and white, Adele's considered and caring approach to storytelling reminded us of the power of balance, nuance and depth in reporting ...

Friday, 20 November 2015

Weekend reading and viewing 21st - 22nd November 2015

The good, the bad, and the downright unforgivable: part 2
Alex McAuley, The Life That Max Built, 13th November 2015
... I particularly remember one little girl, Hannah, who really clicked with Max, and without realising it, at just four years old she had become his advocate, mentor and role model as well as his dear friend. Whenever I went to pick Max up, he and Hannah would be involved in an activity together, usually involving dressing up in women’s clothes! ...

The good, the bad, and the downright unforgivable: part 3 and final
Alex McAuley, The Life That Max Built, 13th November 2015
So here I find myself recounting some dark days in my journey with Max and I still feel my stomach churning, my eyes filling with tears, and my head reeling with the injustice of it all ...
When My Boyfriend Didn’t Want to Come to My Brother’s Down Syndrome Walk
Allison Mitchell, The Mighty, 13th November 2015
... What I needed to realize and what Frank helped me see is that not everyone can jump in full force. Yes, he and Chess got along great but that didn’t mean he was ready to be 100-percent immersed in a community I’d been a part of my whole life. Sounds silly, right? ...

The Harper Family (video 21m 34s)
Attitude Live TV (NZ)
Take a step into the world of the Harper family. After having children of their own, the Harpers wanted to make a difference in the world when the couple adopted Lily, a girl with Down Syndrome. They went on to have another child of their own, also born with Down Syndrome. Then along came Isaac to add to their large family!
  • Attitude Live TV hosts a number of other videos about Lily - just enter 'Harper' into the search box
I fear the eradication of Down's syndrome
Hayley Goleniowska, Mumsnet, 16th November 2015
... there is no health gain in diagnosing Down's syndrome during pregnancy. It cannot be treated or prevented. It simply allows parents to decide whether to continue a pregnancy to term or not.

There are ethical implications to genetic testing, but no easy answers ...

21 Stress Free Tips for Teaching Your Child with Special Needs to Dress Themselves
Emma Sterland, Friendship Circle, 16th November 2015
We’ve all been there – rushing to get out the door while our children are still attempting to button their shirts. The easiest and most natural solution is to do it for them. But a little bit of patience can go a long way. Encouraging your child to dress themselves, and teaching them the techniques to do it, will not only save you time in the future, it will give them an all-important sense of achievement ...

And just in case you missed it earlier in the week, here again is Say it to my face, one of the best short 'awareness' campaign videos ever, from Don't DIS my ABILITY, the NSW annual campaign for International Day of People with Disability:

For your 2016 diary

Down Syndrome NSW: education conference
Following the success of last year’s education conference Down Syndrome NSW is pleased to announce 
EMBRACING SUCCESS - Realising the potential Education Conference, 2016
An essential conference for anyone working with a student with Down syndrome and suitable for educators working in all sectors.
Thursday 17th and Friday 18th March 2016 
A session for parents with Dr Rhonda Faragher on numeracy will take place on the evening of Wednesday 16 March 2016
Booking details and early bird registrations will be available shortly

Sydney Festival
7th - 26th January 2016
Access and Inclusion guide
Companion Card is recognised by the Festival

Drama Class 2016
Marian Street Theatre for Young People has a drama class for young people aged 14-25 with an intellectual disability. The class welcomes new members.
St Johns Church, Gordon4.00pm - 5.30pm Mondays.
Classes begin again on 1 February 2016
Contact details:; Ph: 9420

Opal Card
People who use the Pensioner Excursion Ticket are reminded that you will need to obtain an Opal Card to use on public transport. As of 1 January 2016 there will be no paper Pensioner Excursion Ticket available for purchase.

The largest conference for people with disability in Australia 
Deakin University, Waterfront Campus Geelong
Wednesday, 10th to Friday, 12th February 2016
Life doesn’t have to be a lonely marathon. It can also be a fun run. There are others who share your hopes and dreams. There are others who share your doubts and fears. They need you as much as you need them.

Thursday, 19 November 2015

3DN Movember: supporting the health of men with intellectual and developmental disabilities

3DN is the Department of Developmental Disability Neuropsychiatry at the University of NSW. 3DN staff are participating in Movember:

Our Motivation
Please support us as we turn ugly and get moving for a good cause.
Compared to men in the general population, men with intellectual or developmental disabilities:  
  • experience big barriers to accessing good health care 
  • have a higher risk of mental health problems 
  • are at risk of earlier death from preventable causes 
Team 3DN want to raise awareness of these issues. 
For more information see

Library Shelf : new books

Getting from Me to We: How to help young children fit in and make friends 
Shona Tuck, Woodbine House
This book outlines foundational skills necessary for children to form connections and friendships with others. It explains how parents can teach their children social observing skills at an early stage in their development and identify: Where their child is on the social skills ladder. How to set goals to fill in those gaps. How and when to support their child during play. How to identify play behaviours that hinder or help. How to model good social skills and cues. Written by a speech-language pathologist and researcher with expertise in socially at risk kids, the book includes profiles of children who illustrate a wide variety of characteristics and behaviours that lead to social isolation, along with effective, well-designed activities that encourage joint attention, eye contact, and social interaction. Beyond its appeal to parents, this book will also garner interest from counsellors and teachers as well.

Intellectual Disability and Dementia: Research into practice 
Karen Watchman (Ed), Jessica Kingsley publishers
Presenting the most up-to-date information available about dementia and intellectual disabilities, this book brings together the latest international research and evidence-based practice, and describes clearly the relevance and implications for support and services. 
Internationally renowned experts from the UK, Ireland, the USA, Canada, Australia and the Netherlands discuss good practice and the way forward in relation to assessment, diagnosis, interventions, staff knowledge and training, care pathways, service design, measuring outcomes and the experiences of individuals, families and carers. The wealth of information offered will inform support and services throughout the whole course of dementia, from diagnosis to end of life. Particular emphasis is placed on how intellectual disability and dementia services can work collaboratively to offer more effective, joined up support.
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, 18 November 2015

News and commentary on the NDIS (40)

Disability Loop
... leading the conversation about disability and the NDIS

NDIS Annual Report 2014 - 2015

COAG Disability Reform Council - 13 November 2015 Communiqué

NSW Government Fact Sheets on the NDIS - broken down into specific topics, and for specific groups

NDIS to turbocharge innovation
9News, 27th October 2015
Australians who've helped fund the national disability insurance scheme will be repaid with a $1 billion economic boost from the development of new technologies.

That's the view of the chair of the agency in charge of delivering the $22 billion program ...

The National Disability Insurance Scheme: Looking back to see the future
Michael Kendrick and Margaret Ward, Medium - the Machinery of Government, 13th November 2015
... In 2013, the Australian public massively supported a new system that would cost them an additional levy. In return, they expected people with disability to be given the ‘fair go’ they were due, and a chance to participate socially and financially in community life. The public now expects this change to be relatively swift and seamless.

Very early in the process some people with disability will likely make prompt decisions about their lives and not look back. The experience of the last thirty years, however, suggests much more long-term developmental challenges lie ahead. Change of this magnitude cannot be expected to be swift or easy. Looking back on past reforms offers some lessons that predict future challenges for the NDIS ...

Get NDIS full rollout plans now, govt told
Sky News, 12th November
The federal government is being urged to move fast and finalise agreements with the states on the national disability insurance scheme ...

NDIS Quarterly Report, Quarter 1 2015 - 2016
12th November 2015

My NDIS Story
Leigh Creighton, House With No Steps, 2015
Leigh Creighton is an outgoing young man with a warm personality. When Leigh heard the NDIS was coming to Hunter NSW he was really excited about what this meant for people with a disability. “It really gives people the chance to set a goal and do what they want to do in their own life.” says Leigh ...

Get NDIS streetwise: Sharing highly valuable strategies and tips from those at the coal-face
Thursday 3rd December 2015, 12-1.15 PM AEDT
A webinar presented by InCharge:
Are you frustrated by information sessions without a lot of practical details? 
Well, we want you feeling confident and ready to roll at the start of 2016!

Housing and the NDIS

Accommodating NDIS: maximising housing choice in a reformed disability sector
August 2015 - now available online

What is this report about?
This report is about housing for people with disability under the National Disability Insurance Scheme (NDIS). It is about how to help people with disability live how and where they want to.

Whose report is it?
This report was done for a group that finds out what to do about housing. It is called the Australian Housing and Urban Research Institute (AHURI). They asked for the report to be done.

This report was done by:
Researchers at two universities – UNSW and RMIT.
Researchers at two disability advocacy organisations – People With Disability Australia (PWDA) and People with Disabilities Western Australia (PWDWA).

They found out what people thought about housing for people with disability and wrote the report.

How was this report done?
This report was done by talking with people with disability, families and staff in housing and disability services and in government to find out what they think about housing. It also used some information already collected about everyone in the country.

Screen capture from the Easy Read edition
You can download this report as a PDF or DOCX file, with Easy Read versions also available, from this link.

Tuesday, 17 November 2015

White Flower Memorial event: Sydney, next week

People with Disability Australia event:
in Sydney on November 25 2015

Glasgow, 2018

Down’s Syndrome Congress is real world changer
The Scotsman, 13th November 2015

With Scotland due to host 2018 event, young participants in the Handover Ceremony in India explain the impact it has on their lives and aspirations.
In 2018 Down’s Syndrome Scotland will host the World Down’s Syndrome Congress in Glasgow. In August a team of staff and representatives of the charity travelled to India to attend the World Down’s Syndrome Congress 2015 to learn and to take part in the handover ceremony as the next host nation. Our lead commissioners for the WDSC in 2018, Andrew MacIntyre, 26, Stuart Campbell, 27, and Sam Ross, 25, all had important roles to play. They wanted to share their stories with you ... read on, here

  • If you would like to find out more about the World Down’s Syndrome Congress 2018 you can register your interest and receive regular updates by visiting

Monday, 16 November 2015

News and opinion from the broader disability community

Employment discussion paper - feedback closes 7th December
The National Disability Employment Framework Taskforce is now accepting feedback on its Round 2 discussion paper. The consultation will close on 7th December. The new framework is intended to improve employment outcomes for people with disability.

The Discussion Paper forms the basis for this second round of consultation about a new National Disability Employment Framework. The Discussion Paper outlines a case for changing disability employment services and describes how four key areas of disability employment policy may work in the future. These four areas are:
  • Individualised funding and market-based service provision;
  • Better support for employers and jobs creation;
  • Improved ongoing support and supported employment; and
  • Better use of new technology in the creation of a virtual marketplace
An information session will be held in Sydney for members of the public who are interested in disability employment:
9am - 10.30am Wednesday 25 November 2015Register here

Supporting, not imprisoning, Aboriginal people with disability could save millions
Ruth McCausland, The Conversation, 5th November 2015
Australia imprisons thousands of Aboriginal people with psychosocial and cognitive disability from disadvantaged backgrounds. Our research illustrates the huge cost of this practice – in both human and economic terms ...
Chris Serres, Star Tribune, 11th November 2015
Today many disabled Vermont residents are thriving in the community – and the state is saving money ...

Thank you, disability campaigners, for the difference you’ve made to my life
Lucy Webster, The Guardian, 7th November 2015
I was 11 months old when the Disability Discrimination Act became law, 20 years ago this week. As I approach my 21st birthday, it’s sobering to think that when I was born, there wasn’t a single piece of legislation protecting the rights of disabled people in the UK and that as I lay on the floor with my soft toys, people just like me – but infinitely more courageous – were out on the streets fighting to be recognised as equal. From where I sit now, it is hard to believe ...

UN: Serious Concerns About Human Rights Violations Against Australians with Disability
Australian Cross Disability Alliance, 10th November 2015 
The United Nations Human Rights Council (HRC) has raised serious concerns about human rights violations against Australians with disability during its review of Australia’s human rights record overnight in Geneva ...

Teen Wants to Change the ‘Positive’ Way We Talk About Disability
The Mighty, 10th November 2015
Robyn Lambird says it’s time for us all to have a positive disability discussion — but not the kind you may think of when you hear the word “positive” ...

'Say it to my face' ... a video to share widely

International Day of People with Disability (IDPWD) is designated by the United Nations as a time to celebrate and recognise the achievements, contributions and abilities of people with disability and is celebrated on 3 December each year. 
International Day of People with Disability (IDPWD) is celebrated annually in NSW with the Don't DIS my ABILITY campaign. The 2015 campaign was launched yesterday by the NSW Minister for Disability Services, John Ajaka. The focus this year is on building an inclusive community through awareness and understanding. The Don't DIS my ABILITY campaign will be providing everyday Australians with the tools to help them interact with and be more inclusive of people with disability, all day, everyday.

NO OFFENCE, BUT! Comedy Cabaret is back for 2015 with a kids matinee and 18 + events on 30th November 2015.  Details and booking information here.

The campaign video, Say It To My Face, is designed to warm hearts and challenge preconceptions about people with disability - it does an excellent job on both counts. Sharing is encouraged.

We asked a bunch of kids questions about people with a disability.

Then they met two of our 2015 Don't DIS my ABILITY ambassadors, Tracy Barrell and Gerard O'Dwyer.
Congratulations Gerard O'Dwyer: 2015 Don't DIS my ABILITY ambassador
Ambassadors are the voice of the Don’t DIS my ABILITY campaign. Each year, our ambassadors share their powerful personal stories to raise awareness of the abilities and achievements of people with disability. They also support the campaign by engaging the wider community to think and act inclusively, in all aspects of life. 
The 2015 ambassadors are a diverse group of talented and passionate people from across NSW who are living life to the fullest, including participating in workplaces, schools, communities and at home.
Gerard O'Dwyer 
Gerard is an experienced actor and feels at home in front of the camera and treading the boards on theatre stages. He loves entertaining audiences through his roles, simultaneously challenging stereotypes about Down Syndrome and other intellectual disabilities. His list of credits include the Tropfest short film, Be My Brother, which won him the best actor award in 2009 among other dramatic and comedic performances in TV, film and theatre. Currently he's been working in his first feature length film and he will be making his first foray into opera in the production of Menotti-The Medium Opera Prometheus in 2016. Gerard says if he could give advice to both his younger self and people living with disability he would say: “Just go for it. Keep doing what you love and you can achieve anything if you set your mind to it.” He lives in Guildford in Western Sydney.
Read about the other 2015 Ambassadors, and other people with Down syndrome who have served as ambassadors in previous campaigns here.

Friday, 13 November 2015

Weekend reading and viewing: 14th - 15th November 2015

Ruby's Rainbow (video 9m 43s)
We posted recently about the smart awareness campaign run by Ruby's Rainbow during October.

This small US not-for profit organisation was set up by the mother of a little girl with Down syndrome, specifically to 'grant scholarships to adults with Down syndrome who are seeking post-secondary education, enrichment or vocational classes, and help them achieve their dreams of higher education, while spreading awareness of their capabilities and general awesomeness' ... a singular focus for the parent of such a young child, with her eye well on Ruby's and others' long term futures.

In the video, co-founder Liz Platcha explains why she decided to set up the fund in 2012, and hears from some of the scholarship recipients.

The One Truth I’ve Learned as the Dad of a Daughter With Down Syndrome
Paul Daugherty, The Mighty, 6th November 2015
... If there’s one truth I’ve discovered as a dad of a daughter with Down syndrome, it’s simply this:
Jillian is good. Her goodness inspires others to be good. She has wielded her Down syndrome like a sword of understanding. She acts like the rest of the world should ...
To the People Who Say I Share Too Much About My Child Online
Suzie Skougard, The Mighty, 9th November 2015I know I overshare my daughter, Carly. It’s out of fear. I share because people stare. As she’s gotten older, it’s become more and more real. She is looked at differently. At checkouts and restaurants. Everywhere in between. When she was younger, I think people didn’t notice as much. They do now ...

"Give a Part, Don't Keep Apart": advancing inclusion in advertising and media
Cátia Malaquias,  Global Observatory for Inclusion, 4th November 2015
... how can the media help to achieve human rights for people with disability? The media is a vehicle for mass communication and in that sense it has the potential to shape attitudes to disability at both an individual and cultural level, particularly where it challenges able-bodied perspectives of disability, amplifies the voices of people with disability and portrays people with disability authentically and as equal citizens entitled to participate fully in every sphere of life. In essence, the media, like the education sector, has a critical role in the achievement of social and economic inclusion for people with disability ...

Photographer Recreates Famous Paintings With Children With Down SyndromeElisabeth Brentano, The Mighty, 10th November 2015
Albanian photographer Soela Zani recently teamed up with Down Syndrome Albania and director Emanuela Zaimi to create a stunning portrait series of local children inspired by a number of famous paintings ...

Step Up! for Down Syndrome 2015 - Parramatta 
Step Up! for Down Syndrome 2015 - Parramatta 
Step Up! for Down Syndrome 2015 - Picton
Step Up! for Down Syndrome 2015 - Picton

Camp Willing and Able: 28th - 29th November

Camp Willing and Able is a special needs camp for adults with a physical and/or intellectual disability,  organised by NSW Sport and Recreation.

Lake Ainsworth Sport and Recreation Centre, Lennox Head 
28th - 29th November 2015

The residential camp gives participants the chance to experience all the fun of a traditional residential camp. From canoeing to bike activities, archery and more, make new friends and have fun.

Activities program listed in flyer

Asmall group of volunteer carers available for participants with low support needs. Those with high needs must be accompanied by a carer. Carers are sourced from the community, universities and our volunteer database.

To enrol please click here or for further information contact 02 6618 0400

Thursday, 12 November 2015

Resources for National Psychology Week

This is Psychology Week here in Australia, an initiative of the Australian Psychological Society, aiming 'to increase public awareness of how psychology can help people and communities lead healthier, happier and more meaningful lives.'

People with Down syndrome and other intellectual disabilities, and those who care for them can benefit from information about psychology, resources to promote mental health, and professional psychological services just like everyone else.

Click here for general information about Psychology Week events, activities and resources. You can find resources specifically relating to psychology and people with intellectual disability by entering 'intellectual disability' in the search box on the website.

Other resources:
  • The Intellectual Disability Behaviour Support Program at the University of NSW '...  works to address the research-to-policy-and-practice nexus to improve support for people with intellectual disability and complex support needs.' 
You can learn more about the program, and its Chair, Associate Professor Leanne Dowse, by visiting the website, and downloading the program flyer.

Latest additions to the 'events' pages

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.

Inclusive Education: Opening up university life
The Inclusive Education Program is a pioneering two-year scheme run by the Centre for Disability Studies for people with intellectual disabilities who want to explore tertiary education at the University of Sydney. Open to people from a broad range of backgrounds who are interested in learning more about inclusive tertiary education for people with intellectual disability.
18 November 2015 - University of Sydney

Where the heck am I up to?
InCharge and Path, free events - Live in Blue Mountains/Nepean area? Are you are parent of a child with disability? Feeling stuck or overwhelmed with the NDIS process? Not sure what to do next?  If so, come join us in Emu Plains or Lawson! Bring along any letters or paperwork you have about the NDIS. We'll take a look and help you figure out what to do next. We've asked some independent experts in other trial sites to be available by phone if needed.
27th November 2015 - Emu Plains
4th December 2015 - Lawson

Question and Answer style conversation with National Disability Insurance Agency CEO and screening of NDIS Citizens' Jury Scorecard documentary
People with Disability Australia - Annual General Meeting. The AGM it will be webcast live and questions to David Bowen will be received on #‎NDIAQ&A
Friday 27th November 2015 - Ultimo

Access All Areas Film Festival 2015
An accessible showcase of new Australian films for people with a disability. The tour features 60+ screenings at accessible cinemas, schools, community centres and disability groups in NSW and nationally. Shows how easy it can be to make culture accessible to everyone, and brings great films to audiences that would not otherwise have a chance to enjoy them. The festival promotes inclusiveness and raises awareness of ability and access issues.
2nd-16th December 2015 - across NSW

Improving the mental health and well being of people with intellectual and developmental disabilities
As part of the Professorial Inaugural Lecture series, this lecture will highlight the contribution and future plans of the UNSW Chair of Intellectual Disability Mental Health to achieving the highest attainable standard of mental health and wellbeing for people with intellectual or developmental disabilities. RSVP - booking essential.

Wednesday, 11 November 2015

New disability program to address service gaps for country kids

Royal Far West media release, 10th November 2015
Royal Far West has today launched a new intensive, early intervention therapy service for children with disabilities from rural and regional NSW, designed specifically to address major service gaps for country kids. 
 The ‘Windmill Program’ offers a range of services to support children with mild to moderate disabilities. Services are offered on site at the Royal Far West health and wellbeing campus at Manly and are available to country children aged between 2-7 years of age who can access the Department of Social Services BetterStart or Helping Children with Autism Packages (HCWA). Subsequent support and follow up is available to children and their families in their local community via dedicated RFW telecare programs.
The Windmill Program has been developed in response to major gaps in the provision of early intervention services outside of city areas, which can often create barriers for children and their families in accessing the support they need, particularly in the area of specialist allied health services.

Current research shows that rural children with a disability are around 23% less likely to register with BetterStart and Helping Children with Autism (HCWA) and are accessing up to 60% less funding than urban-based families due to a lack of access to services. It also demonstrates a serious shortage of allied health professionals in country Australia, particularly in the field of clinical psychology ... read the full text of the media release here.

About Royal Far West
Royal Far West is a non-government organisation that has been providing health services to children living in rural and remote New South Wales since 1924 ... Every year, thousands of country children who have non-acute developmental, behavioural, learning, emotional and mental health disorders, and limited access to local services, benefit from our integrated clinical and educational model of care.

Brothers and sisters ... the longest relationship most of us will ever have

Brothers and sisters of people with Down syndrome, generally report very positive relationships, but we can't assume that everyone doesn't have some difficulty at least some times. For some, the relationship might often be fraught, depending on circumstances. If you would like information on supporting siblings across all age groups, the Down Syndrome NSW library will be able to assist. Contact

Siena Ruggeri, The Mighty, 9th November 2015
When I connect with other siblings, we typically agree there are some serious misconceptions about our lives. I believe the disabled community needs a bigger discussion on how to best address the needs of siblings, too. By sharing my perspective, I aim to help parents and caregivers better understand the sibling experience ...

Mom Writes The Most Priceless Letter To Siblings Of A Special Needs Child
Hrtwarming, 9th July 2015
... Did you know your parents watch you and your sibling's interactions on a daily basis and their heart literally wants to burst our of their body with pride and love? They notice ...

Is this a 'pity party'?
Kate Strohm, Siblings Australia (blog), 22nd October 2015
The following was written by a parent of a person with disability on a social media discussion group re disability.
I have heard this garbage of the 'poor siblings' and how hard they have it several times in the past and my response will remain the same: What is so hard about it? What is hard is for anyone to have such self-centred siblings who are so focussed on their own little pity party about their 'hard' life! Yes children (Persons under 18 years of age) who are siblings of a child with disabilities should have support but ….
I hear this type of sentiment over and over and it saddens me for so many reasons ...

Tuesday, 10 November 2015

People with Down syndrome in the media recently ...

It's just co-incidence that they are all men this time ...

US bodybuilder with Down syndrome fulfilling lifelong dream of competing in professional competition
9News, 9th November 2015
In three days’ time, a young man from Indiana will be living out his dream of competing in his first official bodybuilding competition.

Collin Clark, 22, has Down syndrome, but his trainer and friend Glenn Ubelhor says he is one of the hardest working people he’s ever worked with ...

(US) National Institutes of Health, 30th October 2015
As a person with Down syndrome, David Egan has made it his mission to fulfill his own potential and to help other people with Down syndrome fulfill theirs. Here he discusses his work, his belief in the power of research, and his hopes for the future ...
John Demont, The Chronicle Herald, 4th November 2015
The challenge with writing a profile of Will Brewer is this:

Should you open with the fact he takes good pictures, writes lyric poetry and is part of an energetic arts collective? Should you try to lure readers in by talking about the rousing speeches, which he pens himself, that have captivated thousands? ...

Peruvian model with Down syndrome takes on NY fashion scene
Hillary Ojeda, Peru This Week, 22nd October 2015
The new exclusive model of fashion brand Verdette, is the new symbol of determination and perseverance: Peruvian Jaime Cruz.

Diagnosed with Down syndrome and signed with the New York fashion brand, Verdette, Jaime Cruz says about his experience that you should, “never let anyone tell you can not do something.” ...