Address details

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

Thursday, 30 April 2015

Siblings Australia: Sydney forum for adult siblings

Expression of Interest Adult Sibling Forum Sydney

Siblings Australia is planning, along with other committed agencies, to host an adult sibling forum in Sydney in late June 2015.

We are seeking expressions of interest to determine if the forum will go ahead. You can access the details via this flyer.

Visit the  Siblings Australia events page to complete an online Expression of Interest.

In the news this week ...

A small collection of international news from this week's media, directly and indirectly related to people with Down syndrome:

(Bangalore) student saves 28 patients in Nepal
Nikhil Gangadhar, Deccan Herald (India), 27th April 2015
If one were to be hit by an earthquake, his foremost concern would be to escape unhurt and come out alive. However, this student from (Bangalore), placed the lives of 28 patients (with) Down Syndrome before his own. Chirag Charles, a degree student from St Joseph’s College of Arts and Science, who was stranded in Kathmandu when the deadly quake hit Nepal on Saturday, has managed to save the lives of Down Syndrome patients ...

From People with Disability (Australia), on the Nepal Earthquake, 30th April 2015:
Our thoughts are with all those affected by the recent earthquake in Nepal. Nepal's National Federation of the Disabled (NFDN) has released this article urging everyone involved in rescue and reconstruction to be inclusive in their approach and consider the needs of people with disability. You can read more by clicking this link

Immigration Minister indicates boy with autism will be allowed to stay in Australia
Dan Conifer, ABC News, 28th April 2015
Immigration Minister Peter Dutton looks set to allow a 10-year-old boy with autism to remain in Australia ...

Fight to get refugees living with a disability out of immigration detention centres
Sarah Sharples, Inner West Courier, 29th April 2015
... there were 28 kids with a disability that were listed in that report and had been there on average for 11 months ... mandatory detention and detaining people with really complex needs is really unsafe and if we’re going to delay processing them then there are ongoing consequences, particularly for children if they are developmentally delayed, then they will regress ...

Update on baby Gammy, in Thailand
Hands Across the Water (on Facebook), 27th April 2015
It has been a while since we have provided an update on Gammy but that is because life is pretty normal for him these days which is a great thing. He is 16 months old now and has four teeth and you can see from the video he is looking incredibly healthy and happy ...

Wednesday, 29 April 2015

Willing to Work: national inquiry into employment discrimination

The Attorney-General, Senator the Hon. George Brandis QC, has requested that the Australian Human Rights Commission undertake a National Inquiry into Employment Discrimination against Older Australians and Australians with Disability. The Inquiry will be conducted by the Age and Disability Discrimination Commissioner, the Hon. Susan Ryan AO.

Terms of Reference
The inquiry will consider
  • the obstacles faced by older persons and persons with disabilities in actively participating in the workforce; 
  • discrimination against older persons and persons with disabilities as a systemic problem and a considerable barrier to their enjoyment of human rights; 
  • the economic and social costs, and the costs to productivity, that result from discrimination against older persons and persons with disabilities in employment; and 
  • the Australian Government’s commitment to the promotion and protection of human rights of older Australians and Australians with disability.
The Attorney-General requires the AHRC to report on 
  • practices, attitudes and Commonwealth laws that deny or diminish equal participation in employment of older Australians and Australians with disability; and 
  • the Commission’s recommendations as to Commonwealth laws that should be made or amended, or action that should be taken, to address employment discrimination against older Australians and Australians with disability. 
An Issues Paper will be published shortly. The Inquiry will conclude and report by July 2016.

On the arts ... quality counts

Contemporary Art Center Shatters The Idea That Artists With Disabilities Are Outsiders
Priscilla Frank, Huffington Post, 10th April 2015
... The term "outsider art" can be used to describe artists beyond the confines of the artistic institution, whether due to physical isolation, developmental disability or the simple desire to work apart from the academic mainstream. Instances of collaborations like "Super Contemporary," however, illuminate the marginalizing aspects and inaccuracy of the moniker. "I think 'outsider art' -- we should just ditch that word," said Sharaf ...

Quality is crucial for disability arts: poor work fails artists and audiences
Lyn Gardner, The Guardian, 25th April 2015
... Purpose and artistic quality was an issue raised at Mind the Gap’s recent event in Bradford on learning disability performance, where a range of international speakers and participants considered issues around ownership, as well as quality and positioning in work made by disabled artists ...

Tuesday, 28 April 2015

People with Down syndrome online and in other media

Jacksonville woman becomes first Special Olympian to join Ron Jon Surf Team
Dan Scanlan, The Florida Times-Union, 16th April 2015
Jacksonville Special Olympic athlete Megan Bell hit the waves on Thursday near the Jacksonville Beach pier as Ron Jon Surf Team announced her as its newest member. Bell becomes the first Special Olympian on the iconic surf shop's 50-plus year old team.

Learning to tap saved my life
Peter Rowe, ABC Open, 8th April 2015
Facilitated Communication (FC) has been a miracle for me. It saved my life.  Now I can communicate.

Dolly Parton duets with young fan who has Down syndrome
Chris Serico, Today, 25th March 2015
A 12-year-old boy with Down syndrome got to do something most singers could only dream of: duet with Dolly Parton.

NDSC Film Expert Reviews Cinderella
Chess Mitchell, National Down Syndrome Congress, 2nd April 2015
Chess has recently reviewed the Cinderella Movie (2015) for our friends at NDSC. These are his findings ...

Sibling Support Group - Hills district (Sydney)

SibWorks is a 6 week program for 8-12 year olds who have a sibling with an intellectual disability. Each week the group will cover a different theme relating to their relationship with their sibling with special needs. The program aims to provide an opportunity for kids to have a fun experience, connect with other siblings, better understand their brother or sister’s special needs, share their feelings with others who understand, develop coping skills for the future and much more.

Fridays 1 May – 12 June 2015
4pm – 5:30pm

Interaction Head Office, B2/ 11 Hudson Avenue, Castle Hill NSW 2154

Cost: $20 per child for the 7 week program (afternoon tea will be provided)

More info: Call Giselle Tadros, Clinician/Psychologist on 1300 668 12 or

Monday, 27 April 2015

COAG Disability Reform Council Communiqué

The Council of Australian Governments' (COAG) Disability Reform Council met on Friday 24th April 2015. Housing for people with disabilities and the national Disability Insurance Scheme (NDIS) was on the agenda, along with other matters concerned with transition to the full roll-out of the NDIS. 

The Assisant Minister for Social Services, Senator Mitch Fifield has issued a statement about the meeting's discussions, the COAG Disability Reform Council Communiqué:
... The role of housing in the NDISMinisters noted that the total budget for full scheme NDIS includes capital costs for specialist accommodation. 
Some of these funds will need to support existing specialist accommodation supply.
The balance of funds will support people with disability requiring an integrated housing and support model to access housing and to enable the market to generate and leverage new and innovative specialist disability housing. 
The Council has asked officials to work with the NDIA to support the development and testing of innovative accommodation pilots in trial sites that will help to expand the supply of appropriate and sustainable integrated housing and support models for people with disability. This may include existing, contemporary and/or innovative supports.
Initially this will focus on trial sites in which there are adequate funds to support meaningful activity in this area. 
These pilots will start to provide us with evidence about how different models contribute to outcomes for participants. 
It is very important that we take a measured approach to investment to ensure that the scheme is sustainable and can meet the needs of participants into the future. 
Increasing the supply of specialist disability housing will be incremental. A small number of initial pilots can help us define a path forward for specialist housing options to support participants as the NDIS transitions to a national scheme. 
The NDIS efforts in relation to specialist disability housing will be in addition to the ongoing mainstream housing effort of States and Territories.
... read the full statement on all agenda items here.

Peter Singer's comments offend - again

Australian utilitarian philosopher, Peter Singer has again expressed views about the value of the lives of babies with disabilities that are bound to offend many. The US National Council on Disability has responded quickly:

NCD Response to Controversial Peter Singer Interview Advocating The Killing of Disabled Infants: "Professor, Do Your Homework"National (US) Council on Disability), April 23, 2015
On Sunday April 16, contentious Princeton Professor Peter Singer, once again argued that it is “reasonable” for the government or private insurance companies to deny treatment to infants with disabilities. Singer’s remarks were made on “Aaron Klein Investigative Radio,” which is broadcast on New York’s AM 970 and Philadelphia 990 AM. 
In the interview, which was perhaps ironically conducted as part of a press tour Singer is currently on promoting his new book about charities, “The Most Good You Can Do: How Effective Altruism Is Changing Ideas About Living Ethically,” the professor advocated the shocking claim that health care laws like the Affordable Care Act should be more overt about rationing and that we should acknowledge the necessity of “intentionally ending the lives of severely disabled infants” ... read the full statement here.
  • The late Harriet Johnson's response to Peter Singer's views are encapsulated in her well-known New York Times article, written in 2003, Unspeakable Conversations, which Christine Rosen described in her 2008 memorial article on Johnson, as "Thankfully free of the ponderous cant that infects so much of bioethics ..."

Friday, 24 April 2015

Weekend reading and viewing: 25th - 26th April 2015

Attitude TV
Fun loving fraternal twins Thomas and Matthew Whittington both live with Down syndrome. They may have been born with the same condition, but their development has been quite different. Alison Whittington is a Mum in 18 million - that's the chances of having non-identical twins, both with Down syndrome. Meet her beautiful children and watch the contrast between the twins in this short documentary.

What Linda Said
Dave Hingsburger, Rolling Around in My Head, 22nd April 2015
"... They never let me love anyone. I tried but they always stopped it. It's too late for me now. I'm glad it's not to late for you."

Support for Dads
Down Syndrome Pregnancy
While our book and website focus primarily on the concerns of pregnant moms expecting a baby with Down syndrome/Trisomy 21, dads also play a vital role. Sometimes dads have unique questions based on their specific responsibilities as fathers, so it can also be helpful for them to receive support and hear the stories of other dads ...

We must tackle disability prejudice if all young people are to enjoy the artsNicky Goulder, The Guardian, 9th April 2015
Young people face many barriers that can hinder their access to the arts and culture, such as a lack of family support, a low-income background, preconceptions of what the arts are and who they are for, as well as an individual’s concept of identity. How is this different for young people with disabilities?

7 Reasons to Stop Calling Disabled People Inspirational
Erin Tatum, Everyday Feminism, 15th April 2015
... Throughout my childhood and adolescence, I was called “inspirational” so many times that it became completely devoid of meaning. People who had five-minute conversations with me would call me inspirational without even asking my name ... And if you haven’t thought through this stuff before, then let’s explore all of the reasons why you shouldn’t call disabled people inspirational ...

'A Place I Can Proudly Call Home': Every Australian Counts camapign

A Place I Can Proudly Call Home: Housing Action Plan
Every Australian Counts, 24th April 2015
Housing for people with disability is in crisis. 
Over 650 people with disability, their families and carers shared their housing stories detailing the challenges they face with inadequate housing now, and their fears for the future. 
They also shared their dreams, their hopes and their aspirations for appropriate housing that supports them to live their lives independently and to the full.
Together they represent the voice of the disability community and a compelling case for action ...
read the summary, and/or download the full report here, and use links to share

Thursday, 23 April 2015

Resources: on behaviour in children with intellectual and developmental disabilities

The Difference Between Tantrums and Sensory Meltdowns
Amanda Morin, Understood, 13th April 2015
Many people think the words “tantrum” and “meltdown” mean the same thing. And they can look very similar when you see a child in the middle of having one. But for kids who have sensory processing issues or who lack self-control, a meltdown is very different from a tantrum. Knowing the differences can help you learn how to respond in a way that better supports your child ...
Positive Parenting Program (PPP) 
Professor Stewart Einfeld, Faculty of Health Sciences, University of Sydney, 9th April 2015
Professor Stewart Einfeld (the principal researcher at the University of Sydney for the Stepping Stones Triple P Project, Chair of Mental Health, Faculty of Health Sciences, University of Sydney, and is a Senior Scientist at the Brain and Mind Research Institute) talks about his motivation for and aim of the project in New South Wales. This can also be applied to the Queensland and Victoria roll outs.
  • Under the Stepping Stones Triple P Project, two years of free parenting support for parents of children with a disability will be available in NSW from June 2015! Parents will be able to register online to attend group and individual sessions at different locations around the state.
At a time when educators, parents and policy advisors in Australia are grappling with how to deal with the emotional and behavioural needs of children with disabilities, Stepping Stones Triple P is demonstrating it can provide at least some of the answers ...

Not just for college ...

We spend much longer being adults than being children, and we see more and more attention in the Down syndrome/intellectual disability 'community' focussing on good adult lives for people with intellectual disability.

While we all know that preparing for life after school, for adulthood is not something that happens a few months before a specific birthday, the paper from Western Carolina University featured in Kelley Hampton's most recent post about preparing for college applies more broadly than its immediate intention and can be a useful reminder for all of us:
Preparing Your Son Or Daughter for College: Suggestions for Parents of Children with Intellectual Disability, David Westling and Kelly Kelley
... (Parents) often ask us, “What can we do to increase the chance our child will be admitted?”

Unfortunately, when they ask the question, it is often too late for them to do the kinds of things that will ready their child for college. The kinds of attitudes and activities that are most important should begin early in life and continue until the young man or woman is ready to enter college. So through this paper, we are reaching out to parents to tell them what we think will best prepare their child for college. We hope you will find these suggestions useful ...
(in Preparing your son or daughter for college, 
Kelle Hampton, Enjoying the Small Things, 22nd April 2015)

Wednesday, 22 April 2015

A little light relief

Many people in the most heavily populated parts of NSW have had a tough three days of storms and flooding causing destruction and anxious times.

Alan Lawrence's's whimsical photos of Wil, his little boy with Down syndrome 'flying', might give you a little light relief as the weather abates, and for some, the clean-up begins.

We wish all of our families well, and hope you are safe, dry and warm, and can get back to your everyday activities soon.

Pro-choice and anti-eugenic: some recent discourse

The concept of 'pro-choice and anti-eugenic' is attracting increasing attention in the ever more complex ethical debate arising from advances in prenatal testing, as are considerations about the quality of information prospective parents are offered, and the language we use in relation to pre-birth testing and diagnosis:
For Elysium, 6th April 2015
 ... So how about this? Remove abortion from the conversation. Just like when a woman gets pregnant and nobody goes around telling her she has “options” because guess what? She knows that. And if she has a positive screen for Down syndrome, she still knows that. Nobody needs to spell it out for her.

But by including talk of abortion with a Down syndrome diagnosis, medical professionals are forcing parents into a corner. They are forcing parents to make a decision they might not even have considered. They are planting ideas of a horrible, suffering, painful existence that could be prevented with one life-changing decision ...

Seeking a pro-choice and anti-eugenic rhetoric
David Perry, How Did We Get Into This Mess, 28th October 2015
... I believe, without equivocation, that access to abortion should be universal, affordable, protected by law, and solely the choice of the woman. But I also believe that in making such choices we reveal all kinds of underlying principles about what is valued, what is good, and what is normal. In general, disability is perceived as none of these things. I am trying, and mostly flailing about, to develop a pro-choice and anti-eugenic rhetoric ...

How the Pro-Choice Movement Excludes People With Disabilities
Lenzi Sheible, RH Reality Check, 17th October, 2014
... Rather than reasoning that all abortions should be equally accessible no matter what, many pro-choice advocates lean on the argument that of course people, including anti-choicers, would opt out of having a disabled child if they had the means ...

Tuesday, 21 April 2015

Entertainment Book: early bird offers until 27th April

Down Syndrome NSW

Order your Entertainment™ Books and Entertainment™ Digital Memberships before 27th April 2015 and you'll receive an extra $150 in Early Bird Offers! Every Membership we sell raises $13 towards our fund-raising! The more Memberships we sell, the more we raise – so please forward this email to your family and friends!

Order either Membership type before 27th April 2015 
and you'll receive over $150 worth of Early Bird Offers 
which you can use straight away! 
For only $65, Entertainment™ Memberships are packed with hundreds of up to 50% off and 2-for-1 offers for the best restaurants, cafés, attractions, hotels, accommodation, travel, and much more. so get in early, before they sell out!

City2Surf 2015 - team Down Syndrome NSW

Josiah's run in this year's City2Surf will have a much broader impact than the (important) fund-raising:

Are you a runner? Do you want to enter the City2Surf and raise funds for Down Syndrome NSW?

Down Syndrome NSW is going big with City2Surf this year! We understand that with the right support, people with Down syndrome can lead a good life. Josiah Bamber for example is a fit, active and engaged teenager. He is currently in training to run the City2Surf in 2015.

Join Josiah in our campaign for the 2015 City 2 Surf and help Josiah become the first person with Down syndrome to run the 14km. You can join Josiah by:
Start a team or run on your own. 
Entering the City 2 Surf and raising money for Down Syndrome NSW

Sponsoring Josiah 
Run with Josiah and help him make the 14kms

Meet the runners at the finish line for a celebration picnic. 
If you are interested please click here to register.

For further information or any questions please contact:Benjamin Chinnock

T: 0402 503 885 | E:

Monday, 20 April 2015

Ph D Scholarship for work on mental health and people with intellectual disability

A post-graduate scholarship opportunity in the field of intellectual disability is currently available within the School of Psychiatry, at the University of NSW, in Sydney:
The Department of Developmental Disability Neuropsychiatry (3DN)is offering a three-year full-time PhD stipend to one or more highly motivated student/s to work with Professor Julian Trollor on a project that will improve access to, and quality of mental health services for people with ID. The PhD is to be undertaken as part of a broad program of research under the 'Improving Mental Health Outcomes for People with an Intellectual Disability’ National Health and Medical Research Council Partnerships for Better Health Project'.
All details of the application process,  stipend, and application process are on the 3DN website, here.

Saturday, 18 April 2015

Weekend reading: 18th - 19th April 2015

True or False: 90% of Babies with Down Syndrome are Aborted
Amy Julia Becker, Thin Places, 13th April 2015
For years, I have read news headlines in Christian and secular outlets, from conservatives and liberals alike, stating that “90% of babies with Down syndrome are aborted.” As I have argued before, and as a new study demonstrates, it’s just not true. Correcting this common misconception matters both in providing accurate information to pregnant women and in normalizing the experience of receiving a child with Down syndrome ...

What it's really like to have a child with Down syndrome
Jessica Voetmann, The Voetmann Family, 25th September 2014
... What I’d like to share in this post is what it’s really like to have a child with Down syndrome, for me at least because I’m sure everyone’s experience is completely different. No sugar coating, no pity party. Just the reality of it ...
News Anchor to Home Maker, 14th April 2015
... when I learned about your brother’s diagnosis, I sadly exited the present and lived in your future ...

Recognising pain in the non-verbal child
Yvonne Newbould, The Special Needs Parents' Handbook, 14th April 2015
... What if you were really in extreme pain, and nobody knew? What if, despite screaming out and thrashing about and doing everything you could think of to try and alert other people to help you with this excruiating pain, someone assumed you were “playing up” and “being difficult”. It happens ...

Carers deserve more credit in the retirement incomes debate
Myra Hamilton, The Conversation, 2nd April 2015
Australia could not function without the enormous and mostly hidden contribution of carers. We are talking not only of parents of small children, but also of the large number of Australians who provide care for people with disability, a long-term illness or frailty due to old age. Yet because of their commitment to meeting the needs of others they are much more likely to live in poverty in their old age ...

Student diversity category: award winner and runners up
The Guardian, 19th March 2015
Last year, the (Royal Central School of Speech and Drama) launched its performance making diploma for learning-disabled adults, in partnership with the learning disabled theatre company Access all Areas. The aim was to widen participation to a group often excluded from performance-related training courses and from the professional theatre industry ...

Friday, 17 April 2015

2015 'Focus on Ability' Short Film Festival

Entries are open for the 7th Focus on Ability Short Film Festival, run by Nova Employment.

In 2014 180 films were entered and the winners shared in over $90,000 in prizes.

Screenshot from the 2015 Focus on Ability website
This year is set to be the biggest yet with all films entered to really showcase the talents people with disabilities possess. With over $100,000 worth of cash and prizes to be won this is a highly contested competition.

The theme for the competition asks film makers to 'Focus on the Ability' of people with a disability.

The competition culminates in an awards night held in Sydney on September 9, 2015 as well as a special school screening on September 8, 2015, full details to be announced on the Focus on Ability website in coming months.

Entries for the festival close on July 10, 2015.
Follow Focus on Ability on Facebook, and/or on the blog

Thursday, 16 April 2015

Why Andrew rides in the Scrapheap Adventure

Andrew Hunter has an excellent motivation for becoming a Scrapheap Adventure Rider - his video tells you who it is (and you can see his great shed):

Direct link to this video

2015 Scrapheap Adventure Ride - Urana NSW

Cátia Malaquias at the UN in Geneva

Cátia Malaquias is the mother of a young son with Down syndrome, from Perth. You might recognise her name from her campaign to have people with disabilities included in advertising images, to represent the real community.

On 20th March, Cátia represented Down Syndrome Australia at the United Nations in New York supporting the presentation of The Special Proposal, a World Down Syndrome Day campaign with CoorDown Onlus Coordinamento associazioni persone Down and other international associations.

Yesterday,  Cátia continued her advocacy on behalf of Australians with Down syndrome with the United Nations in Switzerland:

Why I am in Geneva Today
Cátia Malaquias, Attitude Foundation, 15th April 2015
This morning, I am in Geneva, Switzerland, to attend the Day of General Discussion (DGD) at the United Nations. This meeting is being held with State parties to the Convention on the Rights of Persons with Disabilities, human rights and disability organisations and other interested parties, arising in part from the concern of the UN Committee on the Rights of Persons With Disabilities that the exclusion and discrimination experienced by children and adults with disability hinders broader social and economic inclusion in their later lives, in all spheres ...

... Why have I come here? Because I am deeply disappointed by the submission made by the Australian government to the Committee for the DGD. ... (that) ... merely asserted that the legal framework for its education system was "consistent" with the Convention. This assertion carries with it the claim that Australia is complying with its obligation to “ensure an inclusive education system”. Australia’s submission then goes to considerable lengths to emphasise that the Committee should read the obligation to provide "inclusive education" as depending upon "available resources" and being only to the extent of "reasonable accommodation" ... read all of Cátia's guest post here, including a link to her submission to the UN

Wednesday, 15 April 2015

Cinderella: invitation to a private screening in support of Down Syndrome NSW

Down Syndrome NSW has a long association with the Parramatta area – the first public meeting to set up the Association was held in Parramatta and our office has been in and around the area for the last 35 years.

So we are delighted that the Lady Mayoress, Kirsty Lloyd, has chosen DS NSW as one of her nominated charities for the year with a private screening of Disney’s new live action 'Cinderella' on Tuesday 21 April.

DS NSW members are invited to dust off your tiaras and put break out the pumpkin for a night of champagne and canapes at Event Cinemas. Get together a group of friends and come along to join us for a great evening – with all proceeds going to our work supporting people with Down syndrome and their families.

Tuesday 21 April 2015
5:45pm – 9:30pm

Event Cinemas, Westfield Parramatta
Ticket: $40

Flyer here

Latest additions to 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.
Social Policy Research Centre UNSW seminar - Experiences of women with disability in rural and war-affected Sri Lanka
Presented by: Dr Karen Soldatic, National Director of Teaching, Centre for Social Impact and a visiting delegation from Sri Lanka
Registration required 

12.00pm - 2.00pm 21 April 2015
UNSW Kensington

Supporting People with Disability to Access the Sex IndustryFamily Planning NSW Workshop - this one-day course is designed to enable service providers to sort fact from fiction, develop knowledge on duty of care, address barriers and make referrals when supporting a person with disability to use the services of the sex industry.
Conducted in partnership with Touching Base Inc.
Penrith on 21 April and other locations to follow.

Sexuality MattersThis new two-day course will provide you with strategies and resources to build your confidence and gain essential skills in how to proactively support people with intellectual disability in the area of sexuality and relationships.
NDIS webinar
Wednesday 29 April 2015 from 1pm to 2pm - online

Just a Bit ... Funny 
Riverside Theatres' Beyond the Square will present Just a Bit…Funny at the 2015 Sydney Comedy Festival. Comedians with and without disabilities and Auslan interpreters will work to deliver a night to squash stereotypes and misconceptions, entertain, challenge the norm and embrace difference.
5:30pm Sunday 3 MayThe Factory Theatre, Marrickville

Moving into a Person Centred Practice World
Council of Social service NSW (NCOSS) and IncludeUs symposium. Who should attend: CEOs, Learning and Development Managers, Operation of Human Services Managers/ Coordinators, Board members and organisational decision makers.
13 May 2015 - Newcastle West 
14 May 2015 - Woolloomooloo
14 May 2015 - Parramatta
15 May 2015 - Wollongong

3rd Down Syndrome National Swimming Championships
Short and long course events.

26 - 27 September 2015
Knox Aquatic Centre, Wahroonga, NSW

Contact: Lyn Foley
T: 0299 133 295

Tuesday, 14 April 2015

Survey about support workers

Dr Mark Brown works for Yooralla (a disability services organisation in Victoria) as well as being an Honorary Research Fellow at Deakin University.

He is currently conducting a survey about disability support workers on behalf of Yooralla, and in partnership with Deakin University, as part of the project The Valued Characteristics of Preferred Disability Support Workers. The survey is designed to be completed by people with disability (and their families) about support workers.

... We want to know if you have a great support worker and what you like about them.
M: 0477 721 257


Monday, 13 April 2015

National inquiry into Violence, abuse and neglect against people with disability in institutional and residential settings

Media reports from the Perth public hearing of the Senate Affairs inquiry into Violence, abuse and neglect against people with disability in institutional and residential settings make for confronting reading - so we can only imagine the horror that some people with disability in Australia have lived on a daily basis.

From the Inquiry's web page:
On 11 February 2015, the Senate referred the following matter to the Senate Community Affairs References Committee for inquiry and report
Violence, abuse and neglect against people with disability in institutional and residential settings, including the gender and age related dimensions, and the particular situation of Aboriginal and Torres Strait Islander people with disability, and culturally and linguistically diverse people with disability.
Submissions should be received by 29 May 2015. On 25 March 2015, the Senate granted an extension of time for reporting until 16 September 2015

Media reports on the first day of public hearings:

‘Voiceless’ disabled ‘raped, bitten, burned’ while in careRick Morton, The Australian, 11th April 2015
An inquiry into the abuse and ­neglect of people with disabilities has heard powerful testimony ­regarding the repeated rape of ­clients, physical and emotional stress and the fear of speaking out in a system where few are given voices ...

Disability abuse victims ‘have nowhere to go’
Rick Morton, The Australian, 10th April 2015
... The first public hearings in the federal Senate inquiry into violence, abuse and neglect against people with disability in institutional and residential settings will begin in Perth today and will hear stories so horrific they will match the royal commission into child sex abuse in scope, disability advocates say ...

'Harrowing stories' to come out of inquiry into disability abuse: Greens
Brendan Foster, WA Today, 10th April 2015
... Ms Siewert called for the Senate inquiry following a joint investigation between Fairfax Media and the ABC Four Corners program, which exposed the Victorian disability services organisation Yooralla, which continued to employ staff who had previous preyed on disabled clients.

Ms Siewert said the widespread abuse of disabled people in institutional and residential care had been ignored for too long ...
Steve Holland, Sydney Morning Herald, 10th April 2015
... the 'inquiry into violence, abuse and neglect against people with disability in institutional and residential settings' heard the abuse of disabled people is not limited to Victoria, with similar instances occurring across Australia ...

Added 14th April 2015:

Institutional culture fuels disability abuse, inquiry told
Rick Morton, The Australian, 14th April 2015
The abuse and neglect affecting the care of disabled people in Australia stems from the archaic institutions in which they were once housed, despite efforts by state and federal governments to close them, an inquiry has heard ...

'Embracing Success: A Teacher's Toolkit' - feedback

Our education conference Embracing Success: A Teacher's Toolkit was held in Sydney at the end of March, it was a great success.  Congratulations to Judy Davidson, Catherine Pedler and Sarah Tscherne from the Information Training and Support Team at DS NSW.

Over 90 teachers gathered at the Pullman Hyde Park, learning about the latest research and practical applications in educating students with Down syndrome. They came from both public and private
schools and included participants who had travelled from small rural townships as well as city dwellers.

We would like to thank all of our presenters for so generously sharing their research and experience over the two days. Our keynote presentations on Reading (Dr Kathy Cologon) and Mathematics (Dr Rhonda Faragher) were received with great enthusiasm.

Thanks to all the teaching and support staff who attended as well, many of whom indicated a desire to attend again. As one teacher said, "I found this very helpful, not only for teaching our student with DS but for all my clas

Educating Learners with Down Syndrome - research, theory and practice with children and adolescents. Eds Rhonda Faragher and Barbara Clarke
All those who attended the Education Conference are aware of the great work being done by Rhonda Faragher. You can visit her work in more detail, and the equally informative work of the other contributors, in this volume.

Friday, 10 April 2015

Weekend reading and viewing: 11th - 12th April 2015

How do children learn about difference?
Embracing Wade, 3rd April 2015
I want to tell you a funny story about what happens when two kids who are incredibly advanced for their age interact with a kid who is developmentally delayed. I want to tell you this story because,
A) it was absolutely hilarious.B) it’s a story of what happens when competition, ego and status don’t influence relationships ...
Walls of Glass
Abby Braithwaite, Hip Mama, 3rd April 2015
"You know, sometimes I think God just gives us what we can handle.”

Oh, I’d heard this one before. I get it a lot, in fact, from well-meaning people who aren’t sure what else to say when faced with a mom who is living their greatest fear, with a child who calls into question the very root of their human quest for perfection. I’m never quite sure why anyone’s god has to come into it ...

Day In the Life – and What a Day!

Mardra Sikora, Lessons More Special Than The Needs, 8th April 2015
... Today we got up just as the sun did. In fact, between the time Marcus got out of bed (slowly, as we are not “morning people”) and made his way downstairs... Marcus called out the window – “It’s too early to be day out!” Still, the sun kept rising anyway and we dressed and readied ourselves.

Of Catholic Schools, Down Syndrome, and Hospitality
Richard Becker, Catholic Exchange, 8th April 2015
I sat across the table from Miss Retseck, the principal of our parish grade school. It was spring, and we were discussing how I’d manage tuition for my kids the following fall. “You’ll have four Beckers on your hands,” I jested. And then, in passing, I added, “Of course, if Nicky wasn’t going to the public school, you’d have five.”

“The public school?” Miss Retseck shot back. “Why?”

“Well,” I faltered, “with Nick’s Down syndrome and all, we figured the public school was the best option – you know, for therapy and services.”

Miss Retseck’s eyes narrowed; her reply, solemn. “Why don’t you let
us try?” ...

To the Mom or Dad Who Told Their Child Not to Stare at Mine
Beth Hersom, The Mighty, 31st March 2015
... You shush your child and pull them away quickly, and I know you’re doing it to save my feelings, but my feelings are not so fragile and your action is doing real damage. You’re teaching your child to be afraid of what they don’t understand. I bet that most of you have a short conversation about diversity and not staring later; you’re good parents, after all. I would like to challenge you to have the conversation right there. Put a smile on. Say hello ...

Bus Stop Films Highlight reel

Kosciuszko to Coogee K2C - wrap

After 16 days and riding over 700kms Lance Mitchell has raised over $10,000 for Down Syndrome NSW. 

Lance cycled to the finish at Coogee on Sunday 5 April, where he was welcomed by Down Syndrome NSW members and friends. 

Young Alicia Carmody, who was the inspiration for Lance's ride,
with her mother, Bec, and Lance. Alicia's father, Cameron,
and Lance have been friends since early childhood.
“It's been a life changing experience to be involved in this initiative and I am extremely grateful of the opportunity to meet so many people in the Down syndrome community and share in their stories. Thanks for all your support,” Lance said.

We had two fantastic community dinners along the way with members, family and friends in Kiama and Tilba. We look forward to getting out to other regional towns soon. 

Thursday, 9 April 2015

Mental health: recent publications

Journal of Mental Health for Children and Adolescents with Intellectual and Developmental Disabilities: An Educational Resource
Volume Six, Issue One, March 2015
  • What will the NDIS do for subspecialty expertise and the multidisciplinary services for complex mental health problems of young people with intellectual disability? Implications from the Centre for Disability Study’s review of the Developmental Psychiatry Clinic by David Dossetor
  • Autism Spectrum Disorders: Implications from the changes in DSM-V by Louisa Carroll
  • The Medicine Cabinet: FAQs for Allergies and Anaphylaxis by Judy Longworth
  • The Community Room: Connecting schools, support agencies and families and transforming lives by Michelle Montgomery

  • Developmental Disabilities, Challenging Behaviour and Mental Health: Research to Practice and Policy– Conference Review by Rowan Keighran

  • Book Excerpt: Ten things every child with Autism wishes you knew by Ellen Notbohm
  • Equal before the Law: Towards Disability Justice Strategies by Terry Sarten

  • The Client Monitoring and Review System (CMRS) by Rachel Rowles and Lesley Whatson
  • Interview with Professor Julian Trollor

Psychiatric disorders in adolescents and young adults with Down syndrome and other intellectual disabilities 
Elizabeth Dykens et al, Journal of Neurodevelopmental Disorders (2015) 7:9
published online 1st March 2015
Relative to other aspects of Down syndrome, remarkably little is known about the psychiatric problems experienced by youth and young adults with this syndrome and if these problems differ from others with intellectual disabilities. Yet adolescence and young adulthood are particularly vulnerable time periods, as they involve multiple life transitions in educational, medical, and other service systems ... These preliminary observations warrant further studies on genetic, neurological, and psychosocial factors that place some young people with Down syndrome or other IDs at high risk for severe psychiatric illness.

Books and other resources

Naomi Lake with her first book (photo used with Naomi's kind permission)
Harmony the Forgetful Hen and the Lost Eggs
Naomi Lake, illustrated by Dave McCleery
Harmony has forgotten where she left her eggs. None of the animals have seen them, so it's up to Naomi to help her find them before they hatch.

Naomi is a young woman with Down syndrome who lives in Western Australia. She loves reading, dancing, drawing and looking after her chooks, which is where the idea for this story came from. A portion of all sales will go to charity.

You can order the book through the Harmony the Forgetful Hen Facebook page

Accessible Arts Newsletter - March 2015

New online resource for people with disability
Senator The Hon Mitch Fifield, 30th March 2015
The Abbott Government has today unveiled a new initiative to help people with disability access advocacy services, NDAP Provider Finder.

“The Commonwealth funds organisations to provide advocacy services to people with disability under the National Disability Advocacy Programme (NDAP),” Minister Fifield said ... read the full text of the Minister's media release here, with a link to the app.

Wednesday, 8 April 2015

Statistical model for live birth prevalence from 1900 - 2010 in US, and the impact of non-invasive prenatal screening

Debate about the science and ethics of prenatal testing dates from the 1970s, and is nowhere near done with recent developments in non-invasive prenatal screening, and its predicted impact on the numbers of babies being born with Down syndrome now, and predictions for the future:

Estimates of the live births, natural losses, and elective terminations with Down syndrome in the United States
Gert de Graf, Frank Buckley and Brian Skotko, American Journal of Medical Genetics, Vol 167, Issue 4, April 2015
The present and future live birth prevalence of Down syndrome (DS) is of practical importance for planning services and prioritizing research to support people living with the condition. Live birth prevalence is influenced by changes in prenatal screening technologies and policies. To predict the future impact of these changes, a model for estimating the live births of people with DS is required. In this study, we combine diverse and robust datasets with validated estimation techniques to describe the non-selective and live birth prevalence of DS in the United States from 1900–2010. Additionally, for the period 1974–2010, we estimate the impact of DS-related elective pregnancy terminations (following a prenatal diagnosis of DS) on the live births with DS ... Our results and our model provide data on the impact of elective pregnancy terminations on live births with DS and may provide a baseline from which future trends for live births with DS can be estimated.
The full text of this important paper is freely available online here.

Prenatal Testing for Down Syndrome: Understanding Two New Studies
Amy Julia Becker,, 3rd April 2015
... Over the course of the past decade, the prenatal testing industry has advanced and shifted. New screening tests called Non-Invasive Prenatal Screening (“NIPS”) have come on the market ... a new study ... concludes that this type of testing “had higher sensitivity, a lower false positive rate, and higher positive predictive value than did standard screening.” 
Another study came out this week ... that sheds some light on the significance of the cultural context of prenatal testing. This study analyzed decades of data about prenatal testing and the prevalence of live births of babies with Down syndrome in the United States. It concluded that the rate of live births of babies with Down syndrome is approximately 30% lower than it would be without prenatal testing, because some women choose to terminate their pregnancy after discovering their baby has Down syndrome. 
But even within the United States, the termination rates vary from population to population and from region to region ... This study suggests at least two conclusions. One, the United States as a whole contains many women who choose to have babies with Down syndrome, whether by forgoing prenatal screening tests, forgoing diagnostic tests, or choosing to continue a pregnancy with a prenatal diagnosis. Two, cultural factors play a significant role in determining who decides to terminate pregnancies once trisomy 21 has been identified ...
A sick, unethical cycle: prenatal testing for Down syndrome
Mark Leach, Down Syndrome Prenatal Testing, 3rd April 2015
So many items have cropped up in the past two weeks that here is a listing of all this news about Down syndrome prenatal testing. They lead to a sad conclusion ... But, maybe we can fix it this time with the administration of NIPS if enough people demand that laboratories and practitioners follow the guidelines and respect women seeking prenatal information by ensuring they receive ALL the information.

Soccer for kids aged 5 - 12: Carlingford

Tuesday, 7 April 2015

Organisations speak out on two immigration matters

Australian Cross Disability Alliance supports calls for the Department of Immigration to review decision relating to child with Down syndrome
Australian Cross Disability Alliance, 7th April 2015

The Australian Cross Disability Alliance supports calls for the Department of Immigration to review its decision to deny a visa to a child because she has disability, despite finding her parents fit to live and work in Australia. The Fonseka family from Sri Lanka plan to work in a Christian crisis centre in remote Australia and claim their visa application has been denied because their daughter, Eliza has Down syndrome[i].

National Ethnic Disability Alliance (NEDA) President Suresh Rajan said:  “People are being reduced to formulas and this effectively sanctions disability discrimination,”

“People are reduced to an equation, or net benefit approach in a process that determines eligibility across the potential or possible cost to a community because of one’s disability.  It fails to view these individuals as people who participate to the overall fabric of Australian life,” said Mr Rajan.

This case is not isolated. There have been reports of similar cases in the media[ii]. Damian Griffis, CEO, First Peoples Disability Network said: “Decisions such as these reflect poorly on us all as Australians, and unfortunately are indicative of a discriminatory attitude towards disability that still prevails,”

“If the system automatically discriminates on the basis of disability, then that system needs to be reviewed,” said Mr Griffis.

Matthew Bowden, Co-CEO, People with Disability Australia said: “Australia is a signatory to the UN Convention on the Rights of Persons with Disabilities and this case highlights how far we still have to go as a society. There was a national outcry recently relating to discrimination against a young child with Down syndrome, and this decision sends a message about the way we view disability and diversity as a nation.”

Carolyn Frohmader, CEO, Women With Disabilities Australia said: “The Australian Cross Disability Alliance encourages the Minister responsible to review this decision and to recognise the value and contribution of people with disability.”
Joint Statement of Disability Organisations Calling for the Release of People Living With Disability in Immigration Detention Centres
30th March 2015
Disability service providers from across Australia call for legislative change to end the detention of all people living with a disability and their families, following the release of the Australian Human Rights Commissioner’s National Inquiry into Children in Immigration Detention. 
People living with disabilities are some of the most vulnerable people in the world. The United Nations High Commission for Refugees estimates there are between 2.3 and 3.3 million forcibly displaced people living with a disability, for whom resettlement options are chronically limited ... read the full Statement and list of signatories here
National Ethnic Disability Alliance report:

Reports of abusive treatment of children with disabilities in schools

Reports of a Canberra child with autism being placed in a 'cage like device' in a classroom have provoked outrage, and claims that such abuse is neither isolated nor confined to children with autism, over the long weekend:

Children with autism caged and abused at school 
Rachel Browne, The Sydney Morning Herald, 2nd April 2015
Disturbing allegations have emerged about widespread abuse of children with disabilities in the classroom following the suspension of a principal at a school where a cage was built for a 10-year-old boy with autism, to control his behaviour ...

Response of peak body, Children with Disability Australia, 3rd April 2015:

  Read the full text of the CDA media release here

CDA's Issues Paper,  "Belonging and Connection of School Students with Disability" is available to download here.
CDA commissioned Dr. Sally Robinson and Julia Truscott of the Centre for Children and Young People at Southern Cross University to develop this issues paper, which raises important concerns and suggests some solutions in relation to the school experience of students with disability.
CDA is following the matter closely on its Facebook page.

Labor calls for disability commissioner after cage built for special needs student 
Shalailah Medhora, The Guardian, 5th April 2015
Labor is calling on the government to reinstate the role of disability commissioner, following the revelation a cage was built in a Canberra public school for a special needs student.

The Australian Capital Territory government has launched an independent inquiry into the case, which came to light on Friday, after a member of the school community made a complaint to the Human Rights Commission ...

Dan Harrison, The Sydney Morning Herald, 7th April 2015
Disability groups have backed calls for a broad inquiry into the education of children with a disability, following revelations an autistic Canberra school student was confined in a cage-like structure ...

Monday, 6 April 2015

Housing, the NDIS and more

Every Australian Counts campaign on housing  Every Australian Counts is currently encouraging people to speak about housing and the NDIS. There will be a meeting of disability ministers to discuss the matter in April.

The website describes existing housing options as:
  • Independent housing
  • Supported housing
  • Modified accommodation
  • Group home
  • Family home
Visit the Take Action: how do you want to live? page of the Every Australian Counts website to find out more and express your concerns and ideas.

Every Australian Counts, 18th March 2015
Over the last few weeks thousands of our supporters emailed the National Disability Insurance Agency and asked them to release the plan for housing under the NDIS.

The response from the Agency on this vital issue was disappointing, bureaucratic and hard to read. We thought we’d have a go at de-coding it for you because on the question of housing, people with disability and the NDIS, we need it to be crystal-clear ...

National Disability Services response to discussion paper on housing
National Disability Services (NDS) has released a paper, Changing the System, which is their response to the Social Housing in NSW discussion paper, published in November 2014

It recommends that the NSW Government establish a state-wide affordable housing levy to secure the revenue that is desperately required to create new stock.

NDS members also identified that careful and thorough planning between the NSW Government, the National Disability Insurance Agency (NDIA) and non-government disability service providers is needed in the following areas:
  • crisis services; 
  • vacancy management and allocation; and 
  • implementation of the National Disability Insurance Scheme (New South Wales Enabling) Act 2013. 
The availability of accessible and affordable housing for people with disability will be critical to the success of the National Disability Insurance Scheme (NDIS). The NDIA estimates that there will be 122,000 NDIS participants without access to affordable housing once the NDIS is fully implemented due to a lack of affordable and appropriate housing supply.

In addition to discussion and calls for action in providing affordable housing in the context of the implementation of the National Disability Insurance Scheme in Australia, debate about types of affordable/social/supported housing/accommodation continues around the world, with a suggestion for 'modern institutions' drawing fire in the US recently:

Calling it Modern Doesn’t Make It Good – No “Modern Asylum” Will Benefit This Generation of People with Disabilities
The Arc, 6th March 2015
Recently, Dr. Christine Montross made what The Arc believes to be a deeply flawed argument in favor of institutionalization for individuals with intellectual and developmental disabilities (I/DD), or as she put it, “a modern asylum”. Dr. Montross failed to address a number of key factors in her piece, but what was most disturbing was the complete lack of reference to the desires of individuals with I/DD ...