Address details

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

Thursday, 30 June 2016

2016 Federal election

Election 2016: Parties respond to ACDA election platform
Australian Cross Disability Alliance, 30 June 2016
The major political parties have responded to the Australian Cross Disability Alliance Election Platform - you can read their full responses on the ACDA website here.

Relevant commitments from the Election campaign
Carers Australia, 30 June 2016
As the Federal Election approaches, we have compiled a list of the relevant pledges made by political parties in regard to areas of policy which affect carers ...

More on health ...

Coincidental to our previous post, this appeared on Facebook today.  Now would be a good time to start following the Adult Down Syndrome Clinic on Facebook,  if you are interested in these questions, posted 29 June 2016:

Expansion of Research and Education Programs at the Adult Down Syndrome Center
What are the critical issues facing people with Down syndrome?

This is an important question for people with Down syndrome, their families, and agencies that serve them, including the Adult Down Syndrome Center.

While there are additional issues and each of us may have a different answer to what is important, our discussions with many individuals, our clinical experience and our review of others’ publications has led us to prioritize these 3 issues and seek ways to address them:

1. Healthy aging and Alzheimer disease
This includes addressing health care issues across the life span to promote good health for its own sake in the younger years but also to set the stage for healthy aging. This also includes determining appropriate health screening for adolescents and adults with DS as well as studying a variety of health conditions.

2. Social skills and daily function optimization
Our initial interest in this topic revolved around the issue of transitioning out of high school and the challenges that has presented for some of our patients. However, it is clear that there may be issues across the lifespan to be addressed.

3. Self-promotion of health
How do we include people with DS in the process of promoting their own health?

Over the next several days (and weeks), we will be posting information as to what some of the questions are that we are addressing and how we are addressing them. In short, we are expanding our research and education efforts. As we progress through this journey, we will be looking to you for input and feedback and will reach out to you as we develop the feedback process.

Health news

CID takes National Action on Health

Wednesday, 29 June 2016

Some recent international perspectives on disability

Disability rights around the world: from 1944 to the present day
The Guardian, 22 June 2016
Since the second world war, disability legislation has increased substantially, but there’s still a long way to go ...

Disability-inclusive development isn’t cheap, but exclusion has a higher price  
Polly Meeks, The Guardian, 22 June 2016
At a parliamentary meeting on the case for disability-inclusive development three years ago, one MP playing devil’s advocate said: “Yes, but isn’t this all too costly?”

Lyndal Rowlands, Inter Press Service, 21 June 2016
Nearly 10 years after UN members adopted a progressive Convention on the Rights of Persons with Disabilities (CRPD), progress implementing the convention has been mixed, even at the UN itself, say disability advocates ...

Shantha Rau Barriga, The Guardian, 20 June 2016
In the many countries I’ve visited over the past several years while researching conditions for people with disabilities, the one constant – and haunting – refrain I’ve heard from people with disabilities has been: “I am treated as less than human.”

Myra Imran, The News, 27 June 2016
Pakistan’s voice of women with disability and known disability rights activist Abia Akram on Sunday expressed concern over the fact that the representation of women in international disability forums is shrinking ...

Disability Australia and Family Advocacy: 2016 Federal Election

Disability Australia Election Platform 2016
Disability Australia calls on all political parties to support our Election Platform.

View the Disability Australia Election Platform in a PDF document or Word document

Family Advocacy on Federal Election 2016 
Family Advocacy Communique, June 2016
With the upcoming Federal Election just around the corner, we have put
together a fact sheet that explains the two main issues for Family Advocacy: 
   1. Advocacy for your family member with disability
   2. Inclusive Education
The fact sheet contains our recommendations and key questions you can be thinking about and asking your local candidates.

Tuesday, 28 June 2016

Short notice: survey on publishing student data

From Down Syndrome Australia, via Facebook today (Note the survey closes on Thursday 30th June):
The Australian Curriculum, Assessment and Reporting Authority (ACARA) have asked our members if they can participate in an important survey to examine the feasibility of publishing Students with Disability data on the My School website. 
We would like to urge as many people as possible to participate in this survey which closes on 30 June.

Resources: online and on the air

Down Syndrome Australia: Easy Read Facebook page - complements the Easy Read edition of the  Down Syndrome Australia website

Accessible Arts Newsletter, June 2016

Service, Support and Success, Volume 5, Issue 6, June 2016
... think about our members (term used for the people we serve). Depending on their history, they may have been in situations where saying “NO” was not allowed or not respected, but I’m sure they heard it, repeatedly, throughout their day. I spent my early years in the field experiencing many different types of support settings, where a member saying “No” was not allowed and certainly not respected. ‘No’ is a word that invokes negative feelings just by hearing it and, if it is the first word of a sentence, we will hear nothing else. We are in a new era where a member saying “NO” is a member saying “NO.” We need to value and respect all requests our members make and consider each request as we would want our requests to be considered before we make a decision ...

On the airwaves and on track
Wendy Andrews, Coffs Harbour Advocate, 16 June 2016
Community radio station 2CHY is giving young people with disabilities a voice. As the result of a grant received from the Law and Justice Foundation, 2CHY is working with students from Toormina High School's Support Unit on the My Voice, My Ability, My Rights program.

"What we're doing with the My Voice, My Ability, My Rights program is training students in broadcasting and interviewing skills," station manager Becky Cole said ...

Monday, 27 June 2016

Dennis McGuire’s Mental Wellness seminar now available online!

In May this year Dennis McGuire visited Australia to deliver a series of seminars to families, health professionals and support workers on Mental Wellness and Healthy Living for People with Down Syndrome.

Uniquely placed to share his insights and learnings, Dennis McGuire is an internationally renowned behavioural expert, the co-founder of the Adult Down Syndrome Clinic of Chicago and co-author of Mental Wellness in Adults with Down Syndrome and The Guide to Good Health for Teens and Adults with Down Syndrome.

Down Syndrome NSW has received tremendously positive feedback about the Mental Wellness and Health Living seminars where Dennis McGuire shared his 30 plus years of experience, knowledge, wit and wisdom about creating a healthy and happy life for people with Down syndrome.

So we are delighted to bring you an online resource of Dennis McGuire delivering highlights from the seminar.

Featuring two, one-hour versions (we have also included the session for Adults with DS), the seminar includes:
  • Common behavioural responses in people with DS 
  • Promoting strengths and creative potential 
  • Behavioural characteristics involving social skills 
  • Promoting healthy self-esteem. 
This resource, created especially for Dennis McGuire’s Australian visit, will be an invaluable reference for years to come.

It is the next best thing to having been there!

Available for purchase online now
  • Down Syndrome NSW Members - $75
  • Non-members - $100 

New book releases

Entwined, by Joyce Wallace Scott, is due to be released 28 June 2016

Judith Scott, despite the challenges of Down syndrome, profound deafness, and thirty-five years of institutionalization has recently been hailed as "One of the most important artists of the twentieth century”, and through television and the press, her mythic journey from dark institutional anonymity to international acclaim has attracted widespread public attention.

In Entwined, Joyce Wallace Scott takes us on a powerful voyage of self-discovery through her twin sister’s silent world, providing a moving account of their shared childhood, in which may lie the origins of Judith’s latent creative genius. It is an epic story of love and determination; of vulnerability and powerlessness; of disability and genius ...
read more here

Finding a Way, by Graeme Innes, former Australian Disability Rights Commissioner
... after a long and successful career – from lawyer to company director to Human Rights Commissioner – he has written his story. Finding a Way shares his memories of love and support, of challenges and failures, and of overcoming the discrimination so many people with disabilities face ... read more here
Book launch in Sydney 19 July 2016 in Sydney - tickets

Friday, 24 June 2016

Weekend reading and viewing: 25 - 26 June 2016

Carlos Gonzalez Paired Up with Marcus Sikora for a Home-Run with the Global Down Syndrome Foundation
Mardra Sikora, Huffington Post, 15 June 2016... there have been those who proclaim labels and then paste them upon him. Labels that, at times, covered the best parts of him. There were, and are, people who only see those labels that put him in a box. A box where he “belongs” in order to fit into the space they want to allot him. A box to keep chances out. A box to contain.

The thing about Marcus is: he doesn’t fit into their box ...

'We fell in love': relationships and people with learning disabilities – in pictures
(UK) Guardian, 20 June 2016
A study conducted by Mencap earlier this year found that one in three young people with a learning disability spent less

Respondents to the survey listed fears including bullying, being laughed at and getting lost as being key concerns when leaving the house. As a result, it can be difficult for people with learning disabilities to build relationships with others.

To celebrate Learning Disability Week, here are some ways that people have found love and friendship through charity programmes.

Queenslanders pool their talents
Gold Coast Titans, 22 June 2016
State of Origin II will attract massive interest tonight at Suncorp Stadium but a few kilometres down the M1 motorway a special Origin event took place today.

Four NSW-eligible Titans – Luke Douglas, Tyrone Roberts, Lachlan Burr and Ryan James – took on four young Queensland swimmers with Down syndrome, who are off to Italy next month to compete in the Trisome Games, in a 4 X 50m freestyle relay.

And it’s all part of the Aquis Gold Coast Titans’ support of Down Syndrome Association Queensland (DSAQ) and the young athletes who will be taking part in the Trisome Games world championships in Florence from 16-22 July ...

Mum wins fight to keep son with Down syndrome at school
Anna Hartley, Queensland Times, 22 June 2016 (updated 23 June 2016)
After a day of intense meetings with the Queensland Department of Education and school leaders, Purga mother Ruth Christodoulou can proudly say her twin boys can stay together. Earlier this week Ms Christodoulou voiced her concerns after her son was "pressured" to leave his state school due to his disability ...

Janet Shouse, Tenessee Works, 1 June 2016
... The dignity of risk is an idea that I encountered when my son with autism was in elementary school. The dignity of risk is the right to take risks when engaging in life experiences, and the right to fail in those activities. I think all of us who are parents want to protect our children from physical harm as well as emotional harm ...

Art Safari: entries open

Challenge Community Services Art Competition is designed to allow people with a disability living in NSW, the opportunity to further enhance their individualism, independence and status within the community through the expression of art.

The Challenge Art Competition is open to all persons with a disability living in NSW, who are currently attending a disability service. 

Entries are now open! Paintings, drawings and photographs are welcome. The prize pool is worth over $2500.

Entries close on Wednesday, 12th October 2016.

The 2016 Art Safari exhibition will run from 22 November - 20 December in Tamworth.

Thursday, 23 June 2016

2 Sydney gymnasts qualify for 2016 Trisome Games

It's not only swimmers headed for the 2016 Trisome Games in Italy next month. Congratulations, and good luck to gymnasts Nick Zrnic and Chris Bunton:

Epping YMCA gymnasts head to Italy for World Down syndrome Trisome Games John Besley, Northern District Times, 15 June 2016
While much of the world begins to set its sights on Rio for the Olympics, two Epping YMCA gymnasts are preparing for a different kind of Games.

Nicholas Zrnic and Christopher Bunton, both 23, will head to Italy next month to represent Australia at the 2016 World Down syndrome Trisome Games ...

The pair are the only Australian male gymnasts to qualify ...
read on here.

Earlier posts on Chris Bunton's gymnastics career:

Federal Election 2016: commitments on health of people with intellectual disabilities

Parties commit on the health of people with intellectual disability!
NSW Council on Intellectual Disability, 22 June 2016
We did it! Parties commit on the health of people with intellectual disability!

The major parties have responded to our call for action to address the stark physical and mental health inequalities experienced by people with intellectual disability ...

Wednesday, 22 June 2016

What’s the best way to prepare special-needs students for the workforce?

A view from the U.S.:

Escaping the Disability Trap
Alia Wong, The Atlantic, 15 June 2016
... Research conducted by Eric Carter from Vanderbilt Kennedy Center and two other special-education experts suggests that students are more than twice as likely to have paid employment in their first two years after high school if they have early work experience. Yet fewer than one in four students with intellectual disabilities and autism have early work experiences, according to Carter, and while an increasing number of parents hold high expectations, many are under the impression that sheltered jobs are the only option for those with disabilities ...

21 DES services for people with intellectual disability show the way forward

When you get the right employment support, good things happen
Inclusion Australia, 16 June 2016
People with significant intellectual disability can work in the open labour market when they get the right support.

The DES Outcome Rates by Disability Type report ( links here) shows that some DES providers are achieving high rates of open employment outcomes for people with intellectual disability.

Twenty-one (21) providers are achieving 26-week employment outcome rates greater than fifty percent (>50%) for people with intellectual disability, with the highest performing provider achieving eighty-four percent (84%).

The highest performing provider had the following distinguishing features:
  • Structured job search to customise a job specifically for a person with intellectual disability and building a compelling business case to the employer. 
  • Undertaking job analysis to establish the employer’s needs for job performance. 
  • Systematic job training by qualified staff at the work site to achieve the required job performance. 
  • Ongoing support with the employer and employee to maintain the quality of the job. 
DES providers that adopt evidence based employment support for people with intellectual disability are demonstrating high rates of employment outcomes from 5 to 8 out of 10 persons with intellectual disability getting jobs that last at least six months.

The Commonwealth should be congratulated for; focusing on rewarding providers who achieve good results, introducing consequences for providers who achieve poor results, and, publishing provider results by disability type, and creating an informed market. The Executive Director of Inclusion Australia (formerly the National Council on Intellectual Disability), Mr Mark Pattison said,

“High performing DES providers deserve our recognition for their excellence in assisting people with intellectual disability get and keep jobs in the open labour market. It is encouraging to see a growing number of providers achieving 26-week employment outcome rates beyond 50%.”

These results indicate that future reform of Disability Employment Services must ensure that good practice remains viable and expanded to reach a greater number of people with intellectual disability across all regions who need the right support to get a job in the open labour market.

Tuesday, 21 June 2016

Federal election 2016: Labor education policy

The Labor Party released its school education policy document, Your Child. Our Future, on 18 June  2016, including a section headed 'Supporting students with disability'.

Research news and commentary #7 for 2016

Clinical trial opens new avenues for pharmacological treatment in Down's syndrome
Centre for Genomic Regulation, Alpha Galileo, 6 June 2016
A team of scientists led by doctors Rafael de la Torre at Hospital del Mar Medical Research Institute (IMIM) and Mara Dierssen at the Centre for Genomic Regulation (CRG) have shown that epigallocatechin gallate together with a cognitive stimulation protocol, might improve some cognitive domains in individuals with Down’s syndrome ...
Science Media Centre, 6 June 2016
Publishing in The Lancet Neurology journal a group of scientists have described their use of a particular extract of green tea to try to improve cognition of young adults with Down’s syndrome and report that the extract improved memory and behavioural aspects better than the placebo control ...
Safety and efficacy of cognitive training plus epigallocatechin-3-gallate in young adults with Down's syndrome (TESDAD): a double-blind, randomised, placebo-controlled, phase 2 trialRafael de la Torre et al, The Lancet Neurology, Volume 15, No. 8, p801–810, July 2016
Summary - BackgroundEarly cognitive intervention is the only routine therapeutic approach used for amelioration of intellectual deficits in individuals with Down's syndrome, but its effects are limited. We hypothesised that administration of a green tea extract containing epigallocatechin-3-gallate (EGCG) would improve the effects of non-pharmacological cognitive rehabilitation in young adults with Down's syndrome ...
  • To read this article in full you will need to make a payment
Periodontal disease's contribution to Alzheimer's disease progression in Down syndrome.
AR Kamer et al, Alzheimer's and Dementia, 4 Feb 2016 (doi: 10.1016/j.dadm.2016.01.001)
... In summary, we propose that PerioD could affect the AD progression in DS subjects. PerioD occurs early in life and, therefore, preventative strategies could be instituted before the induction of AD-specific pathology. Assessing these preventive effects in AD pathogenesis requires longitudinal cohort studies. In non-DS AD, these cohort studies are difficult and expensive to implement. By comparison, examining the role of PerioD in DS may provide us with relative fast answers [60]. Moreover, because PerioD may appear before the AD-specific pathology, a causal effect may be possible to be determined.
  • The full text of the research paper is available free online - click on the title.
Babies with Down syndrome have healthier hearts
Medical Express, 2 June 2016
Compared with the early 1990s, babies born with Down syndrome (trisomy 21) have a lower risk of developing serous heart problems, according to a new registry study from Karolinska Institutet published in Pediatrics, the journal of the American Academy of Pediatrics. The reason for this improvement is not known, but the researchers believe there to be a likely connection with fetal diagnostics ...

Monday, 20 June 2016

My Perspective winners announced in London

Down's Syndrome Association (UK):
The winner of our 2016 My Perspective photography competition was announced at a special ceremony held at Kew Gardens, London.
In years gone by, people with Down’s syndrome were photographed as exhibits; the viewer was not supposed to see the person, just the difference. 
My Perspective turns the camera around and gives people with Down’s syndrome the chance to show the world from their point of view.
The winner, runners-up and short listed photographs can be seen here.

Book now for 'Down syndrome – Quality Living for Individuals and Families - A Lifespan Approach'

IASSIDD (International Association for the Scientific Study of Intellectual and Developmental Disabilities) is the first and only world-wide group dedicated to the scientific study of intellectual disability.

Following the IASSIDD congress in Melbourne, we have been able to secure from Canada the expertise of Dr Roy Brown, a clinical and educational psychologist and Professor Emeritus at the University of Calgary, and his colleague Dr Nancy Jokinen Assoc Professor at the School of Social work, University of Northern British Columbia. Both are established authors, presenters and have over 20 years of experience in quality living issues in people with Down syndrome.

Down syndrome – Quality Living for Individuals and Families 
- A Lifespan Approach
Presenters: Dr Roy Brown and Dr Nancy Jokinen

9:00am – 4:00pm Tuesday 23rd August, 2016
SMC Conference and Function Centre, 66 Goulburn St, SYDNEY
Cost: $155 members, $175 non members

Topics include ...
  • Individual quality living Principles, Concepts & Application 
  • Family Quality Living – Issues for families 
  • Summary of recent research – recommendations for practice 
  • Opportunities for small group discussion surrounding 
  • Early childhood 
  • School aged issues 
  • Young adulthood – further education, employment 
  • Ageing and Dementia 

Friday, 17 June 2016

Weekend reading and viewing: 18 - 19 June 2016

Review: Shaken But Not Stirred, A Movie by the Christchurch Reflection Group of Seven Self Advocates 
Olive J Webb, Intellectual Disability Australasia, March 2016
Following the major earthquakes in Canterbury New Zealand, a group of seven self- advocates with intellectual disabilities, supported by Advocacy IHC, recognised a gap in support during natural disasters for people with intellectual disabilities, established the ‘Christchurch Reflection Group’ and made a movie ‘Shaken But Not Stirred’ ...
Raising A Daughter With Down Syndrome Makes Me Dream Of A More Inclusive Society
Rémy Bellet, HuffPost France (English translation), 16 June 2016
A year ago, the world got to know Louise through a message that started like this: “This is my daughter. Louise. She is 4 months old, and has two arms, two legs, two great chubby cheeks, and one extra chromosome.”

My wife, Caroline, wrote these words because she could no longer tolerate how people would reduce our daughter to her Down Syndrome. She could no longer tolerate that only four months after she was born, people were already mapping out her future ...

The mediocre Moms' guide to raising a child with Down syndrome, or any kid for that matter
Stephanie Hall Meredith, Down Syndrome Pregnancy, 2016
There are lots of articles out there praising parents as superheroes for raising children with Down syndrome or other conditions, but what if you’re a mom or dad who’s perfectly average?

I was lonely, I needed someone special
Susan Horsborough, Australian Womens Weekly, July 2016
An article continuing the Australian Women's Weekly's  well established practice of reporting on the lives of people with disabilities. This one is in the print and iPad editions of the July 2016 issue (now available for purchase), but not yet on the AWW website. Includes substantial input Liz Dore, from Relationships and Private Stuff, and from Natalie Bacci and Danielle Pham.

In ‘Finding Dory,’ a Forgetful Fish and a Warm Celebration of Differences
A O Scott, New York Times, 15 June 2016The movie was released in Australia this week. This review was highlighted by Dr Brian Skotko (Down Syndrome Program, Massachusetts General Hospital).
... In a way that is both emphatic and subtle, Finding Dory is a celebration of cognitive and physical differences. It argues, with lovely ingenuity and understatement, that what appear to be impairments might better be understood as strengths. The inclusiveness of the film’s vision is remarkable partly because it feels so natural, something that no adult will really need to explain. Children will get it, perhaps more intuitively and easily than the rest of us ...

Why you should hire someone with an intellectual disability
James Adonis, Sydney Morning Herald, 17 June 2016
Even when work is an agonising slog, having a job – any job – is a blessing. Aside from the remunerative benefits that ensue, employment boosts self-esteem, expands social networks and enhances well-being. Those benefits are especially pronounced for people with an intellectual disability ...

Inquiry into access to transport for seniors and disadvantaged people in rural and regional NSW

NSW Legislative Assembly (media release)
7 June 2016

Getting around is hard enough for older and disadvantaged people in closely settled areas, but what about the plight of those in rural and remote areas? That question is at the heart of a parliamentary inquiry into transport access for seniors and disadvantaged people, being conducted by the NSW Parliament’s Committee on Community Services.

“Most Australians have access to public transport or have enough money to provide their own,” Committee Chair and Northern Tablelands MP Adam Marshall said. “For most of us, society supports our mobility. “But in some cases, particularly for those who live in remote areas and are on pensions or who are otherwise disadvantaged, transport options are either very limited or absent. That in turn limits access to medical and social support services. 

"This inquiry is looking into how that issue might be overcome in an equitable way. “We’ll be looking at a range of options, including adjustments to existing transport services or financial support measures." 

The Terms of Reference adopted by the Committee will give particular regard to the situation of seniors, Aboriginal persons, persons with disability, and social housing tenants. The Inquiry emerged from a request by Deputy Premier Troy Grant who asked that the Committee examine these issues and report back to Parliament.

 “We welcome any ideas or observations on this issue through submissions to the inquiry,” Mr Marshall said. “The inability to get suitable transport is a chronic problem for many individuals, so it's important that we provide a useful channel that helps the community to be part of the solution.”

The Committee will report to Parliament before 30 November. It is receiving submissions until 21 July 2016

For further information, including the full terms of reference, please refer to the Committee’s webpage.

Thursday, 16 June 2016

Groundbreaking appointment to UN disabilities committee

We join in congratulations to Robert Martin, coming from around the world:

Robert Martin's historic election to UN disabilities committee
NewsHub (NZ), 15 June 2016

New Zealander Robert Martin has made history at the UN, as the first person with a learning disability to be elected to the United Nations Committee on the Rights of Persons with Disabilities.

"The hard work begins, and I know it's going to be a lot of hard work," he says.

"I don't think that people with a learning disability... that it's properly recognised we can do a lot of stuff, we can actually work."

The Kiwi activist's term runs from 2017 until 2020.

"Robert is well respected for his long history of advocacy work on disabled people's rights both domestically and internationally," Disability Issues Minister Nicky Wagner says.

"His election to the Committee is important because it is the first time that a person with a learning disability has been represented at the highest level. It's a world first."

Mr Martin, a Whanganui native, received a brain injury during birth. He grew up experiencing abuse as he was moved between state institutions -- later leading a campaign to close those institutions.

In 2008 he was made a Member of the New Zealand Order of Merit.

Mr Martin has been a long-time leader of People First New Zealand, an advocacy group fighting for the rights and inclusion of all people with learning disabilities.

"Robert was instrumental in the development of the Convention on the Rights of Persons with Disabilities through Inclusion International, a global organisation for people with learning disabilities," Ms Wagner says.

"He is now able to bring over a decade of experience and leadership at the international level on the Convention to his role as a Committee member."

Wednesday, 15 June 2016

People with Down syndrome on screen and stage

WTHS graduate to appear on ABC's 'What Would You Do?', 9 June 2016
Fans of the popular ABC show "What Would You Do?" will have a chance to see the talents of Peter Brodzinski in action. The 2005 Washington Township High School graduate, who has Down syndrome, successfully auditioned for an acting role in the upcoming season premiere of the show, which is slated to air on June 17 at 9 p.m. on the (US) network.

Brodzinski, who studied chorus and drama and participated in musicals and talent shows while at WTHS, was selected for an audition thanks to the help of his agent, Gail Williamson, from KMR Associates out of Los Angeles. In the upcoming episode, which is hosted by ABC news correspondent John Quinones, Brodzinski plays a grocery store employee with Down syndrome who is bullied by customers (played by actors) ...
'My abilities go beyond the condition'
Sarah Carabott, Times of Malta, 7 June 2016
"Before being a person with Down’s syndrome, I am a person," film protagonist Simone Brescianini told a preview in Milan when asked about his condition.

“I cannot delete Down’s syndrome from my life, but my abilities go beyond the condition,” he told a 330-strong audience ahead of his trip to Malta for this year’s Valletta Film Festival.

Mr Brescianini is the protagonist of a short film shot in Malta, ... Altrove - Elsewhere, the 18-minute film takes viewers beyond Down’s syndrome. It follows a 24-year-old during a visit to Malta in 2014, as he discusses food, love and everything that is fun ...

Causing A RUCKUS: The Artists Smashing Stereotypes About Disability
Liam McLoughlin, New Matilda, 8 June 2016
A moment of abuse became a flash of inspiration ... Gerard O’Dwyer was just trying to do his job when he was publicly humiliated.

  • 'Speed of Life' images - RUCKUS Ensemble has posted an excellent gallery of photos by Heidrun Lohr, from their second major production 'Speed of Life' at PACT Centre for Emerging Artists in May 2016.
NDSC Film Expert Reviews X-Men: Apocalypse
Chess Mitchell, (US) National Down Syndrome Congress, 13 June 2016
... Even better than I expected and better than the earlier ones.  Final thoughts from Chess on the movie: Teamwork is the key to being successful X-Men.

Cross Disability Alliance election platform

Added to our 2016 Federal Election - Information page:

Building a Disability Inclusive Australia Australian Cross Disability Alliance election platform, 14th June 2016

Tuesday, 14 June 2016

News and commentary from the broader disability community

Disability is so often a complicated topic
Business Disability International, 2016
BDI has created a new animation ‘Labels Are So Old Brain’. It highlights ‘old brain’ thinking on disability (assumptions, labels, etc), and focuses on the potential for ‘new brain’ thinking around human potential, talent, and opportunity. We hope this animation will help start a fresh conversation with employers and other stakeholders ...

Why the Right to Choose is Important
Bob Joondeph, Disability Rights Oregon, 22 August 2015
... Studies show that self-determination and the right to make life choices are key elements for a meaningful and independent life. To borrow an old expression, if you make a decision for someone else you help them for a day, if you assist them to make good decisions for themselves, you help them for a lifetime ...

My unborn child has inspired me to think about disability and genetics and the value of a life
Carly Findlay, 29 June 2016
I wrote this for the Amazing Babes event at the Emerging Writers Festival. Gosh I was nervous about reading it out. I cried when I read it to Adam (and so did he). And I choked up on stage. And I was scared about publishing it. Because these issues aren't discussed enough. And people fling judgment around - even people in my own community. I don't think they realise how their judgement creates fear about discussing issues like this one ...
International Disability Alliance, 20 May 2016
People with disabilities face added risks of abandonment, neglect, and do not enjoy equal access to food, health care, and other assistance during conflict, displacement and reconstruction ... Governments, donors, and aid agencies are overwhelmed with many competing priorities during conflict and natural disaster. But they need to ensure that the rights and concerns of people with disabilities are addressed in aid efforts ...

Petitions, change and the 'r' word
Dave Hingsburger, Of Battered Aspect, 24 May 2016
So, again, there's an entertainer, this time a comedian, who is using vile and hateful words in a routine about people with intellectual disabilities ... But, in the end, it wasn't his routine that left me feeling hopeless. I felt all sorts of things, anger, disgust and incredulity at the level of hateful ignorance spewed, but I didn't feel hopeless. What left me feeling hopeless was the audience. They were laughing. Some of them were laughing, hard.
And that, my friends, is our fault ...

Frank Brennan, The Conversation, 24 May 2016
Laws and policies often perpetrate and deepen the disadvantage and exclusion of vulnerable groups, especially prisoners ...

Would you like to work with us?

... and make the world a better place for people with Down syndrome?
Down Syndrome NSW needs a passionate and energetic Information and Communications person to join our team.

Based at North Parramatta this 3 day a week position will help keep our Information and Support team up to date with the latest information, resources and research impacting people with Down syndrome. You will also work with the Executive Director developing and delivering social media, web content and external comms.

For a position description and selection criteria email

Applications close Wednesday 22 June 2016

Monday, 13 June 2016

People with Down syndrome ... doing what matters to them

Harry Fairchild is the world’s first person with Down’s syndrome to officially qualify as a table tennis coach
Down's Syndrome Association (UK), 8 June 2016
Harry Fairchild recently passed his Table Tennis England Level 1 Coaching Qualification to become the world’s first qualified table tennis coach with Down’s syndrome ...

Photographer preparing for international competition
Dunedin Television (NZ), 7 June 2016
A Dunedin man with an an eye for a great picture is off to London for an international photography competition. 25 year old Carlos Biggemann lives with Down's Syndrome, something that hasn't stopped him pursuing everything he wants in life ...
Strong voice supporting people’s abilities: My Job - Declan Murphy
John Daly, The Irish Examiner
... Going to Trinity and experiencing independent college life was both challenging and engaging for Declan, just the same as thousands of other students: “I loved going to university. Sometimes the work was hard, but I did like the subjects. College life was the best part, it was a great experience to live in Dublin. At the weekends, I got the bus home to Waterford and the train back up to Dublin on Sunday nights. I think it changed me as a person. I got to do my own thing. I had a lot of responsibility to be independent. I was able to prove to people that I could look after myself.” ...

As a person with a disability, Camp Ekon changed my life
Peter Flagler, Toronto Star, 30 May 2016
I knew from my first week at Camp Ekon that it would be my summer home for years to come.

Camp Ekon is the best thing that has ever happened to me, because as a person born with Down syndrome, camp has given me a chance to experience the outdoors, be involved in a camp environment and be a member of an amazing staff ...

Down syndrome couple's love story captures hearts with more than 12 million views on social media
Ashleigh Stevenson, ABC News, 28 May 2016
A young Queensland couple with Down syndrome say they are overwhelmed about the reaction to their love story, which has resonated with people around the world. The ABC's story about Michael Cox and Taylor Anderton's journey to attend a debutante ball for people with disabilities on the Gold Coast has had more than 12 million views on social media ...

Meet the 14-year-old athlete with Down syndrome inspiring others to take up sport
Sarah Keaveny-Vos, CBC News Prince Edward Island, 2 June 2016
'I feel like I've become an athlete. I just want to say I'm really so happy'. Jacob MacNeill, a Grade 8 student at Birchwood Intermediate, has a need for speed. ...

Support Team Australia through new Facebook page

Down Syndrome Swimming Australia has set up a new Facebook page specifically for Team Australia's participation in the 2016 World Championships in Florence, Italy next month. The swimming championships will be part of the Trisome Games 2016.

The team training camp and presentation of uniforms for Italy has been held in Brisbane this weekend - lots of photos and news have been posted already.

Like the page to keep up with preparation and travel, and to cheer the team on in Italy. Send messages of support, and congratulations throughout the games, 15 - 22 July 2016

Congratulations and good luck to all the team members and supporters!

Down Syndrome Swimming Australia team presented with World Championships uniforms
Kathy McLeish, ABC News, 12 June 2016
After years of preparation and training, the Down Syndrome Swimming Australia team has been presented with their uniform ahead of the World Championships in July. The 22 swimmers, from around Australia, gathered in Brisbane to enjoy some time in the spotlight before they fly to Florence in four weeks ...

"We hold more than 50 per cent of all the available world records in Down syndrome swimming, we've been the champion team for the last four World Championships, we'll probably do that again this year," he said. "This is a seriously good, seriously competitive bunch of people ...

Previous posts on the Trisome Games 2016:

Friday, 10 June 2016

Weekend reading: 11 - 12 June 2016

Maken Understand Love
Mardra Sikora (guest blogger), Ellen Stumbo, 6 June 2016
... didn’t want to tell him of these articles, of mothers who feel that their children, who look a little like him, are “better off” dead. That there are people who claim that those with Down syndrome are not worthy of life. I do not want to tell him these things.

But then he surprised me, as he has before and doubtless will again, when he intuitively knew more about the situation than I shared. He looked across the table and said, in his way, “Maken Understand.” ...

Parenting my kid who has Down syndrome isn't all rainbows and unicorns
Maureen Wallace, She Knows, 8 June 2016
When a mom writes a letter to the doctor who kept telling her to abort her baby with Down syndrome, telling him how wrong he was, chances are good it will go viral.

“Oh my God!” we think indignantly. “The nerve! That baby is beautiful! All life is precious!”

Then we share the post along with pink twirling hearts and gaping-mouthed smileys to show our support for this beautiful almost-aborted baby. Maybe toss in a unicorn or a rainbow.

But what are we really accomplishing? ...

First and Last Impressions

Kelle Hampton, Enjoying the Small Things, 8 June 2016
... “She is wise enough to know that she’s at a different level than her friends, but smart enough to know that she can fit in,” her teacher writes. “She has a wonderful stubborn streak that reminds you that she knows herself well and won’t settle for less. She is most comfortable being treated as equal and being given the same responsibilities as her friends.” Oh, to have your children seen for who they truly are ...

Strike a Pose
Link Disability Magazine, June 2016 (Vol 25, #2)
In April Madeline (Stuart, 19, was invited to model at Caspian Fashion Week in Astrakham, Russia, an experience she describes as “awesome”, also appearing on television in Moscow and conducting numerous media interviews ... Though the response to Madeline has been largely positive, Roseanne says convincing the fashion and beauty industries to employ a model with disability can still be a tough sell. “The response has been both positive and negative,” she says. “The positive has been wonderful and inclusive with a lot of people contacting us for Maddy to work for them but there is still a huge stigma and it is a lot of hard work to convince most people that they are helping themselves by including Madeline. Not only are they being inclusive but they have huge publicity opportunities which is great for everyone, as with more publicity things become just an everyday occurrence” ...

For Nicholas Love
Letitia Keighley, Embracing Wade, 18 May 2016
... There is something. It’s there fluttering away quietly in the deep recesses of my heart. It’s the feeling of breath leaving my lungs with joy. I have tried so hard to explain it over the years and I can’t. It’s a purity, a soundness, a deep rooted sense of connection I have with Wade. He sees me and gets me ...

White bread performance won't cut the mustard

Claire Stewart, Australian Financial Review, 10 June 2016
Jamie Brewer, the star of US television hit American Horror Story, flew to Australia in late May to spend a weekend making a short film, just south of Sydney. Filming finished ahead of schedule – usually unheard of – and so far, the director says, the rushes look fantastic.

Brewer has Down Syndrome and 11 of the crew have intellectual disabilities. They're also students at director Genevieve Clay-Smith's Bus Stop Films production company.

"That weekend dispelled a few stigmas about inclusion, both on a film set and in the workforce generally, that it's too hard to employ a person with a disability, that it will compromise on quality, and that it will slow things down." ...


Changing the Game for Players With Down’s Syndrome
Cara Jessop, Huffington Post (blog), 25 May 2016
‘We love good stories. We need good stories’. I am in a kitchen with two young mothers, swiping through pictures of my brother Tommy on my phone. I’m there to demo a new iPad game my studio Enabling Play has developed, and we are chatting while waiting for the kids to finish their Saturday morning activities ...

Beyond Words app
NSW Council on Intellectual Disability e-News, May 2016
Beyond Words publish a series of books for people with intellectual disability using pictures to explore a range of topics.  Beyond Words has now developed an app where all of their books are available!

The Beyond Words Story App has over 400 short picture stories and 1800+ pictures covering a diverse range of subjects including medical treatment, getting arrested, bereavement, making friends and falling in love.

Click here to find out more.

Sally and Possum
ABC Kids and ABC iView
An innovative and beautiful video series for young children who use Australian Sign Language (Auslan) as their primary means of communication; designed to enhance their foundational literacy & numeracy skills.

Thursday, 9 June 2016

News and commentary on the NDIS (49)

 NDIS and Me
People with Down syndrome and/or their families and carers can join the closed Facebook Group, NDIS and Me,  for discussion specifically about the NDIS and people with Down syndrome.

NDIS Newsletter, May 216

Every Australian Counts is proposing that people with disabilities and their families call on individual local candidates to pledge support for the full implementation of the National Disability Insurance Scheme, here.

NSW Council on Intellectual Disability - updated commentary on NSW services transfer

How the NDIS is Disrupting the Culture of Largesse in NFPs
Natasha Hudson, Probono Australia News, 7 June 2016
Not for Profits with head offices not based in the National Disability Insurance Scheme trial sites will tell you they’re ready for a 1 July start up, but disability consultant Natasha Hudson is not convinced ...

NDIS prep program's life extended in NSW
9 News (via AAP), 24 May 2016
A National Disability Insurance Scheme program has been extended in NSW with an additional $3 million promised to help people prepare for the scheme. Disability Services Minister John Ajaka says the funding will enable My Choice Matters - a program that helps people with disability and their families prepare for the NDIS - to continue until June 2018.

The program uses workshops and other resources to help people with a disability throughout many areas of their life. NSW Council for Intellectual Disability chair Michael Sullivan said the program was valued by many people ...

Forced cohabitation is not "companionship" or "inclusion"
Ellen Read, Advocacy for Inclusion, 19 April 2016
It seems bizarre to have to spell this out, but it is apparently necessary: forcing a person with disability to live with another person with disability is not “inclusion” or a form of “companionship”.

Advocacy for Inclusion is currently working on two cases where NDIS participants who are going through the planning process are being pressured by the NDIA planner to cohabit with another person with disability. Both participants are currently living alone and are very happy living alone. However, the NDIA planner is insisting that the person with disability should live with another person with disability as this is more “inclusive” ...

Wednesday, 8 June 2016

Order your 2016 | 2017 Entertainment™ Membership now

Down Syndrome NSW is selling Entertainment™ Memberships and with your support, the funds we raise will be used towards our programs and services.

If you haven’t already purchased your Membership this year, this is your chance to support us and be rewarded with over $20,000 of valuable offers.

Top 5 reasons to love Entertainment
  • You will be supporting our fundraising. We receive 20% of the purchase price for every Entertainment™ Membership sold.
  • You can enjoy hundreds of up to 50% OFF and 2-for-1 offers from some of the best fine dining restaurants, popular cafés and family restaurants in your area.
  • You’ll be ‘entertained’ all year long with valuable cinema, activities and theme park offers.
  • Treat yourself to discounted eGift Cards from national retailers like David Jones, Woolworths, rebel and much more.
  • Discover new places with more than 2,000 hotels and resorts, with exclusive accommodation offers.
There are four editions available for NSW which are:
  • Sydney Greater West
  • Sydney and Surrounds
  • Newcastle, Central Coast and the Hunter Valley
  • NSW South Coast

2016 Federal election - information page

With still another three and a half weeks to go until the Federal election on 2 July 2016, we have posted a page at the list under the blog banner at the top of this page.

It will give links to information in Easy English about how the election works, and links to policy information from political parties and disability organisations.

The links to policies are posted for information only, not to endorse any particular political position, party or candidate.

The page is called FEDERAL ELECTION 2016 - INFORMATION

The page currently has information from two previous posts on the election, and the information below. It will be added to as the campaign progresses:

Here are 2 links to easy read resources on the Australian Electoral Commission’s website. They are great resources to help to prepare to vote in the upcoming federal election on 2 July.
  • Easy English Guides - How to Enrol to Vote; How to Vote at a Polling Place; How to Vote by Mail
Every Australian Counts is proposing that people with disabilities and their families call on individual local candidates to pledge support for the full implementation of the National Disability Insurance Scheme, here.

Carers Australia Election document 2016
3 June 2016
Carers Australia has produced an election document for the 2016 Federal Federal Election, detailing the commitments we are seeking from any future Australian Government ...

Let's use this election to improve the lives of family and friend carers
Carers Australia (media release), 6 June 2016
In releasing its pre-election document, Carer supports: addressing collateral damage, Carers Australia is focusing its “asks” on a set of proposals that will improve the effectiveness and address gaps in current support services for carers.

“Of particular focus are carers with high needs,” Carers Australia CEO, Ara Cresswell said today ...

Jobs Plan For People With Disability Fact Sheet - Australian Labor Party policy document.

Tuesday, 7 June 2016

Latest additions to 'other events' page

    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 

    Hosted by the Down Syndrome Association of Turkey, in Istanbul - Congress website

    Exclusion and Embrace: Disability, Justice andSpirituality Conference 

    Uniting Church - multi-faith Australasian Conference reflects a growing interest in issues of faith and meaning in the lived experience of disability. The Conference has the support of a wide number of organisations including the Jewish Christian Muslim Association (JCMA) and the Faith Communities Council of Victoria (FCCV). The Uniting Church Synod of Victoria and Tasmania is providing the Conference Secretariat. Among the themes explored will be ethics, care, inclusion in faith communities, friendship, discrimination, love, justice, liberation.
    21, 22 and 23 August 2016 - Melbourne

    2015 Survey of Disability, Ageing and Carers: results

    This publication contains the first results from the 2015 Survey of Disability, Ageing and Carers. This will be followed by a Summary of Findings in late 2016.

    Disability, Ageing and Carers, Australia: First Results, 2015
    29 April 2016
    This publication is the first release of data from the 2015 Survey of Disability, Ageing and Carers (SDAC). It presents key information about disability prevalence in Australia as well as data about older Australians (those aged 65 years and over). Data is also included about people with disability who reported that they had experienced discrimination. Future releases will provide greater detail about these groups and important information about carers ...
    Experience of discrimination for people with disability
    The 2015 SDAC introduced a new disability discrimination module designed to estimate the prevalence of discrimination for those with disability and identify the nature of this discrimination. Included in this initial release of SDAC data is information about Australians with disability who were living in households, aged 15 years and over, and their experience with discrimination because of their disability.

    In the last 12 months:
    • Almost one in 12 Australians with disability (281,100 people or 8.6%) reported they had experienced discrimination or unfair treatment because of their disability. 
    • Rates of reported discrimination were similar for men (8.3%) and women (8.9%). 
    • Young people with disability (aged 15-24 years) were more likely to report the experience of discrimination (20.5%) than those aged 65 years and over (2.1%). 
    • The source of discrimination was an employer for almost half of those aged 15 to 64 years with disability who were unemployed (46.9%) or employed full-time (46.2%) and just over one third (34.6%) of those employed part-time, at the time of the survey. 
    • Over one third (35.1%) of women and over one quarter (28.1%) of men aged 15 years and over had avoided situations because of their disability. 
    • Older people (aged 65 and over) were less likely to avoid situations because of their disability (20.1%) than younger people.