Address details

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

Monday, 30 June 2014

Address to the National Press Club: Disability Discrimination Commissioner Graeme Innes, Wednesday2nd July

July 2, 2014 
ABC TV 12 noon
Australia's Disability Discrimination Commissioner Graeme Innes will complete his term of office on 4 July. In this presentation, Commissioner Innes will review his eight and a half years in the role. Appointed by the Howard Government, in 2005 he was re-appointed by the Rudd-Gillard government. 
The Federal Government announced - as part of budget savings measures - that his position would not be filled by a full-time Commissioner who has lived experience of disability, and knowledge of the disability sector. Instead, one of the current Commissioner's will fill the role on a part-time basis. 
Commissioner Innes will examine - through the personal stories of people with disabilities - the successes which have occurred, and the progress achieved. He will talk about better access to buildings and public transport. He will assess how the National Disability Insurance Scheme will improve the lives of people with disabilities, and resource them to make a positive contribution to the Australian community and economy. 
He will also look at areas where success has been lacking- unequal access to justice for victims and offenders, the employment crisis facing people with disabilities, and the poor educational outcomes being achieved. 
Finally, he will provide a frank assessment of missed opportunities, and the directions which government should take on disability policy in the future.
Given his preparedness to call it as he sees it - figuratively at least - and the fact that his term will end two days after, his presentation should be informative and entertaining.
(National Press Club of Australia - Speakers)
National Press Club broadcasts are archived here

2014 review of Australia’s Welfare System: interim report and public consultation

Yesterday (29th June 2014), the Australian Government released the interim report of the Reference Group it commissioned to review the welfare system (commonly known as the McClure review). A six week period of consultation will close on 8th August, followed by the release of the final report.

The interim report is available in several formats, including an Easy English edition from the Dept of Social Services website, here. Details on how stakeholders can make submissions are also linked from this page.

Media about the interim report:

Commentary on the review prior to the release of the interim report: 

Welfare backing for single payment
Patricia Karvelas, The Australian, 24th June 2014
The National Welfare Rights Network has told the McClure welfare review it would support a single welfare payment and a “transitional” benefit for people with disabilities who have some capacity to work ...

HILDA survey shows Australians less reliant on welfare, number of people on benefits down since 2001
ABC News online, 16th June 2014
A report shows working-age Australians are less reliant on welfare than they were a decade ago ...

Carers deserve better than this
Carers Australia, 16th June 2014
... Carers Australia will be making a considered and robust response to options raised in the Social Welfare Review Discussion paper when it is finally released. This includes the point that, on 2010 estimates, the replacement costs of unpaid care was estimated to be over $40.9 billion, or 3.5% of GDP ...

Welfare reform to target carers
Patricia Karvelas, The Australian, 14th June 2014
Carers would be required to prepare for a future return to work under the landmark McClure review of the welfare system. As well as a tightening of their mutual obligations, the number of benefits carers receive would be simplified ...

Friday, 27 June 2014

Weekend reading and viewing: 28th - 29th June 2014

When a woman noticed my daughter because she has Down syndrome
Ellen Stumbo, Finding Beauty in My Brokenness, 24th June 2014
... Sometimes people stare at my daughter because she has Down syndrome, sometimes I can tell by the way they look at her that they feel pity, but not this time, and not this woman and her sister ...

Buts and Rebuts
Autistic Speaks, 19th June 2014
When it comes to reasons why parents are hesitant about – even outright against – autism acceptance, there are a series of “buts…” that come up over and over again ... So, every time I see one of the “buts” come up, I desperately want to engage that person in conversation and try to help them get a bigger view of the situation, a zoomed-out perspective, so that maybe they will see the validity, the rightness, dare I say, of accepting autism ...
* I think this is the best thing I've ever read about what it means to be autistic. And, the writer makes so many points that could equally be applied when thinking about Down syndrome, and probably other disabilities. Wow. (Jackie Softly, Co-CEO Down Syndrome Australia)

Mother Recalls How She Came To Terms With Her Daughter's Down Syndrome
Huff Post Live, 4th June 2014
Tara McCallon can remember the first time she ever articulated that her daughter had down syndrome. She was in the hospital gift shop ...

Stay or go? Country families' dilemma on children with disabilities
Bush Telegraph (ABC Radio National), 20th June 2014
Meet 12 year old Reggie Happ. He loves tenpin bowling and swimming and has two great mates who, like him, have Down Syndrome. He's in year seven at high school in Bathurst, New South Wales, where a dedicated teaching assistant helps him stay in touch with the curriculum. But it wasn't always like this. When he lived in the small town of Coonamble out west of Dubbo, he struggled to find a suitable friendship group ...
Heather Kirnlanier, Star in Her Eye, 5th January 2014
... Then, at another appointment, Doctor Normal looked at the sizes of my two children in the office (the oldest is two pounds lighter than the youngest) and asked me, without any pretense or awareness, How is it, having a normal child? ...

2015 calendar reminder: call for photos

DS NSW members - it's time to start sending in photos to be included in the Down Syndrome New South Wales 2015 Calendar. The theme - "Be Seen in 2015"

Craig Peihopa has very kindly offered to put together another wonderful calendar for us for 2015 and we need you to send in your photos to make it the best one yet!

All the details are here.

And if you still need to order your 2015 Entertainment Book, the details about both the paper and new digital editions are here.

Thursday, 26 June 2014

Dance, Theatre and Visual Art - Engaging Students with Disability: professional development for teachers

Discover how dance, music, theatre and visual arts can unlock students' learning in stimulating and enjoyable ways.

5 - 6 September 2014

Dance, Theatre and Visual Art: Engaging Students with Disability is a NSWIT Accredited Professional Development conference, presented by Sydney Opera House.
Visit Accessible Arts NSW 'What's On?' web page for links to arts events across NSW

New resources

New 'See and Learn' editions: iPad, Windows 8.1 and paper editions
Down Syndrome Education International, June 2014
Two versions of our new See and Learn Saying Words app are now available - for iPads and for Windows 8.1 tablets, laptops and PCs. This is the first of 17 new See and Learn apps due for release in the coming months. 
The first versions of our new See and Learn apps are now available for iPads and Windows 8.1 tablets, laptops and PCs. Versions for Android tablets and Windows Vista/7 laptops and PCs will also be available in the coming weeks ... read more.

A Place to Call Home: the story of the Benambra Intentional Community
Sally Richards and Timothy West, 2014
Three young men with a disability live in a welcoming community in the heart of Canberra along with 22 other households in public housing. They are the headtenants and share their home with a co-resident or house-mate. Two of them require 24 hour support. This book describes how three mothers achieved this over several years. It describes the families, the essential elements, the strategy,the partners, the community, the philosophy, the work.
Individuals and families: $10.00 plus $3.85 postage
Organisations: $20.00 plus $3.85 postage
Email: for your copy.

Members' library
The Down Syndrome NSW library catalogue is available to view here.  

Wednesday, 25 June 2014

News and commentary on the NDIS (22)

Views about how well the NDIS is meeting needs in the current trial sites are somewhat variable, as might be expected:

Meet the Mowbrays: the human face of the NDIS 
Natasha Boddy, The Canberra Times, 22nd June 2014
... this a family where having a voice is clearly cherished. For Trish and Glenn Mowbray, communication with their four children is an important part of the secret to their happy family - where everyone gets a say in how they want to live their life ...

Children with autism miss out in NDIS
Rachel Browne, Sydney Morning Herald, 20th June 2014
Families of children with autism say they have been short changed under the National Disability Insurance Scheme, with early intervention therapy provisions falling far below international best practice. Participants in launch sites have been told they will received funding for less than six hours of therapy a week, less than a third of the recommended 20 hours ...

Checking up on the NDIS
El Gibbs, Ramp Up, 19th June 2014
Positive changes, improved services, confusion, inconsistency, and reduced services. El Gibbs found these were just some of the outcomes for participants of the NDIS trial since it began almost a year ago ...

‘Preparing for the NDIS’ – 5 June 2014 webinar now online
The National Disability Insurance Agency held its sixth webinar on 5 June 2014 on the theme ‘Preparing for the NDIS’. The panel featured early trial site participants and carers, sharing their insights and responding to questions from the online audience. Now available to view online.

NDIS Planning guide and workbook
Published June 2014
The Planning workbook has been designed to assist you to identify your needs, goals and current supports and start the planning process - it is now available to download from the NDIS website here.

NDIS Costs on Track
ProBono Australia News, 5th June 2014
Participation in the National Disability Insurance Scheme has doubled since December 2013 with the average cost of individual care packages dropping to within budgeted predictions, the Federal Government has told the Senate Estimates Committee ...

ACT to transition 5,000 people with disabilities onto NDIS from July 1ABC News Online, 5th June 2014
Recent school leavers, young children and 64-year-olds will be the first groups to join the National Disability Insurance Scheme (NDIS) in the ACT. From July 1, the ACT will begin transitioning 5,000 eligible Canberrans away from current disability services onto the NDIS ...

Tuesday, 24 June 2014

'Mothers and Sons' road tour 2014: national, regional + documentary

Two opportunities coming up to see Sons and Mothers on stage, and a documentary on its making.  Some of the performers have Down syndrome :

Sunday Arts up Late: Sons & Mothers screens on ABC1
Christopher Houghton, Arts (ABC), 17th June 2014
No Strings Attached is an Adelaide based theatre company that creates unique work based on the perspective of disabled artists and performers. In 2012 they made Sons and Mothers – a theatre production that explored the bonds of love and frustration experienced by disabled sons and their mums ... (the) documentary is a fly on the wall journey following the performers and writer/director Alirio Zavarce as they bring the show together, from workshop to performance ...
  • Sons & Mothers screens on Sunday 20th July 2014 at 10:35pm on ABC1

Sons & Mothers hits the Road
No Strings Attached - News, 1st June 2014
After the runaway success of Sons & Mothers’ premiere season in the 2012 Adelaide Fringe, and after foot stomping standing ovations in its 2013 Space season, No Strings Attached Theatre of Disability is proud to announce that in 2014 Performing Lines will deliver a national tour of Sons & Mothers through the Road Work initiative ...
... “It took seven years to create Sons & Mothers: five years for the idea to gestate, two years to develop, three weeks to rehearse and two weeks to perform. In those brief two weeks, Sons & Mothers became the buzz of the 2012 Adelaide Fringe. Five-star reviews and great word of mouth led to sold out houses and top Fringe Awards. A magic energy continues to animate this unusual show that appeals to audiences of all ages. As one reviewer put it, this show appeals to anyone who’s ever had a mother, and we are thrilled that audiences all over Australia will get to see it" ...

People with Down syndrome in the media

Smile that made Down's girl a Sainsbury's star: Natty is face of supermarket's children's clothing campaign after beating hundreds of hopefuls

Beezy Marsh, Daily Mail (UK), 23rd June 2014
A girl of seven with Down’s Syndrome has been chosen from hundreds of hopefuls as the face of a major children’s clothing campaign. The decision by Sainsbury’s to use Natty Goleniowska to advertise school uniforms is a step forward in making children with the condition more accepted, say campaigners ...

Athlete With Down Syndrome Sues For Right To Compete
Michelle Diament, Disability Scoop, 20th june 2014
A 24-year-old with Down syndrome is suing in federal court after he was allegedly denied the opportunity to compete in the sport he loves due to his disability. After training in mixed martial arts for more than four years, Garrett Holeve is looking to take his competition to the next level. However, the Cooper City, Fla. man says his efforts to move from exhibition matches to participating in amateur bouts have been thwarted because he has Down syndrome ...

Wrexham man with Down's syndrome wins black belt
Jonathan Grieve, News North Wales, 16th June 2014
... “Although the training and concentration got more intense, he just focussed himself and kept at it. He wasn’t confident about taking the grading, but he took advice from the club instructors he trusts and stayed calm and focussed to pass" ...

Jianna Georgiou - a dancer with exceptional talent
Jianna Georgiou is one of four 2014 recipients of the Australia Council for the Arts’ Community Partnerships Career Pathways – Professional Development funding ...
Visit the home page of Jianna's website to see what she achieved throughout 2013.

Don't Kill Us
Speak Out, Spring Special Edition 2014
The astonishing story of famed swimmer and Down syndrome activist Karen Gaffney, to whom the University of Portland presented an honorary doctorate in May 2013.

Actress Jessica Kishner Morgan on Her Big Break
Aol.on Entertainment, 28th may 2014
... as a guest star on the Hallmark Channel original series ‘Signed, Sealed, and Delivered'
I'm Taking a Stand to Make My Difference in the World
Lauren Potter, Huffington Post (Impact blog), 2nd June 2014
... I want to live in a world where everyone can live, go to school and go to work without having to be afraid. Afraid of being judged, afraid of being bullied or cyber-bullied. Afraid of new things. Afraid of failure. Afraid of dreaming. In fact, I want to live in a world where people are actually celebrated for their differences, just as I celebrate mine! ...

Monday, 23 June 2014

Trivia night: DS NSW fundraiser, Five Dock

Down Syndrome NSW is set to host its first Trivia Night to raise much needed funds. Down Syndrome NSW supports and promotes the interests of all people with Down syndrome, their families and carers in NSW. We work to improve the quality of life of people with Down syndrome by empowering and enabling our membership and supporters.

Research news and commentary #7 for 2014

To stay or go: living with a disability in rural Australia
University of Sydney News, 19th June 2014
Rural families in Western NSW who have a child with a disability are faced with difficult decisions about whether or not to stay in their communities, according to a study by the University of Sydney.

"The lack of access to therapy services such as speech and physiotherapy in rural Australia often means families are forced to compromise on services if they decide to stay," said Dr Angela Dew from the Faculty of Health Sciences.

"It's testament to the sense of community of small rural towns that many people do stay when faced with such limited options'
... read more
(Congratulations to DS NSW member Vicki Happ from Western NSW on her part in writing this report.)

Down Syndrome Research Forum 2014
The Department of Psychology at Lancaster University is hosting the 2014 Down Syndrome Research Forum on 24 and 25 September in collaboration with Down Syndrome Education International. The Down Syndrome Research Forum provides an opportunity for researchers active in areas related to Down syndrome and those working with people with Down Syndrome to meet, share ideas, and discuss recent findings and implications for practice.

Bookings are now open, and a call for papers has been issued ... read more

Dr Maggie Woodhouse receives OBE
Down's Syndrome Association (London), 18th June 2014
Dr Joy Margaret (Maggie) Woodhouse from the School of Optometry and Vision Sciences at the University of Cardiff has been awarded an OBE for services Optometry and people with disabilities in the Queen's Birthday Honours List.

For over 20 years Dr Woodhouse has been running a study of visual development in children and young people with Down's syndrome at the University of Cardiff
... read more

(US) Down Syndrome Registry
A short video overview of the Down Syndrome Registry - US based, but the research resulting from its establishment will  benefit people with DS worldwide, in the longer term

Centre for Disability Studies - research on intellectual disability and anxiety
Do you have a mild intellectual disability and experience anxiety?
The Centre for Disability Studies (University of Sydney) is looking for adults with a mild intellectual disability aged 18 years old and older who experience anxiety to participate in a research study on treatment for anxiety.
If you would like further information, or to be involved, please contact Lynette Roberts at

Lines of Inquiry #3, May 2014
... the regular newsletter of NDS’s Centre for Applied Disability Research (CADR).

The Compose study is a ...
"research from Stanford University, funded in part by the Down Syndrome Research and Treatment Foundation, (that) has identified BTD-001 for its potential to improve memory, language, and learning in people with Down syndrome.
We are now running a clinical study for persons with Down syndrome age 13 to 35 years old to evaluate whether BTD-001 treatment has any effectiveness.
The Study is currently approved in Adelaide, Launceston, Melbourne, Perth, Sydney, and Wollongong. Sites in other locations are planned" ... read more

Friday, 20 June 2014

Weekend reading and viewing: 21st - 22nd June 2014

Yes, my son, an adult with Down syndrome, lives with us
Mardra Sikora (guest blogger), Finding Beauty in My Brokenness, 13th June 2014
The first thing you should know is this: Marcus lives with us, not because he has to but because we want to live together. Like millions, really well over 6 million, families with adult children who live “at home” in the US today, this is the best option for us right now ...

Fatherhood: It’s all about love
Lisa Larson, The Spectrum, 14th June 2014
If there is one thing Bob Sonju’s face exudes when he looks at his two oldest daughters, Macey and Madi, it is love. ... While most parents feel that their children are unique, having two Down syndrome children in the same family, when neither parent has any predisposing factors for the syndrome, is truly one in a million. And it was certainly not what Bob and his wife, Leslye, were expecting ...
Last Sunday was Father's Day in much of the northern Hemisphere - this article is one of a number circulating about/by fathers of people with Down syndrome.

My Two Kids With Down Syndrome and I Found a Place to Be a "Typical" Family
Stephanie Practico, Huffington Post (blog), 17th June 2014
... Special Olympics is where we go for sports training and competition. My children need to be in a place where despite their disabilities they are among their peers, can have the same experience as any other child and are valued for their special abilities. It is so wonderful to have a place in the community where we can be a 'typical' family ...

Here, Now
Dave Hingsburger, Rolling Around in My Head, 18th June 2014
I was at a meeting the other day where one of the speakers was saying that some of the work had been put on hold because ... because ... because ... the self advocate who is part of the team is on her honeymoon ...

5 Reasons Your Business Should Hire Someone With An Intellectual Disability
Amy Wright, Maria Shriver, 18th June 2014
... in the spring of 2013, Ben decided it was time to make his professional life as authentic as his personal life. He resigned as vice president at Morgan Stanley Wealth Management and opened Dye Creek Capital, a full service investment practice with a focus on employing people living with intellectual and developmental disabilities ...

Getting away with murder
Craig Wallace and Samantha Connor, Ramp Up, 18th June 2014
Media reports on homicides of people with disability, particularly those with intellectual disability, are frequently sugar-coated and euphemised. This only serves to diminish the value of those who have lost their lives ...

Time to let go of the medical model
Jarrod Marrinon, Ramp Up, 17th June 2014
Jarrod Marrinon says the source of negative attitudes about disability is people with disabilities themselves. He says it's time to leave the medical model of disability in the doctor's room and to take responsibility for changing these attitudes ...

  • Links to all five of BILD's email newsletters, on Ageing Well with Learning Disability, to mark (UK) Learning Disabilities Week 2014 have been added to our post about the initiative, here

Northern Intellectual Disability Health - 12 week Exercise Group

Weekly program of group exercise for people with intellectual disability starts mid July 2014, at Cremorne for 12 weeks.

Participants will be assessed prior to commencing and individualised exercise plans developed.

For more information contact Elizabeth at
Northern Intellectual Disability Health: or phone 02 8968 3400

Source: NSW CID E News, June 2014

Thursday, 19 June 2014

New sports opportunities

Soccajoeys Next step
Readers with young people who would like to play soccer may be interested in Soccajoeys Next Step. They offer a soccer program for families of children with additional needs aged three to eight years and who maybe in early childhood intervention programs. The program encourages inclusion and the opportunity to increase their physical and social development in a fun and safe environment

Classes are currently held in Waverly, The Hills and Epping. They hope to be able to expand into other areas of Sydney soon.

Bowling - Warners Bay
DS Bowling Warners Bay is an initiative of DS NSW Hunter Region. It is a social group for people with Down syndrome over the age of 10. The group meets every 4th Friday to bowl at Super Strike Warners Bay
Contact: Lisa Taylor  Mob: 0421 642 675  E:

Executive Functioning: Volume 1, Issue 1, June 2014

From the Canadian experts who edit the brilliant, free online newsletter for support workers, Service, Support and Success, comes Executive Functioning, a new free online publication providing resources for 'senior leadership in organisations providing human services'.  

The very first issue has been published this week, on Evidence-Based Decision Making.

In the words of Dave Hingsburger:
... it aims to present information in a fun, easy to read style, about issues of importance to senior leaders. This publication will come out every 3 to 4 months and will be available for free by subscription. If you are interested in receiving the inaugural issue you can do one of two things. 
1) email and request the first issue - then you can decide to subscribe or not
2) simply subscribe now
Subscriptions, or single copies, can be requested from

Wednesday, 18 June 2014

Ryder Jack Manulat 2011 - 2014: funeral service and memorial foundation

Many readers will have seen the very sad news of the sudden, unexpected death of two year old Ryder Manulat, from meninococcal disease, last week.  Ryder's family has been actively involved in the DS Hunter Region during his short life. Now DS Hunter region members are supporting Merran, Ray and their family in their loss, and are invited to attend his funeral, to be held this Friday:
11am, Friday 20th June 2014
Nelson Bay Baptist Church
19 Government Road, Nelson Bay 
Candy Connors, Liaison and Support for the DS Hunter Region community, has asked us to pass on this information for anyone who is interested:
Many people have emailed me with their condolences for the family and I will ensure that each of them is collated in a booklet for the family. If you would like to add your own thoughts to that please simply email them to me at 
On behalf of Merran and Ray, DS Hunter Region is in the process of setting up a foundation to honour Ryder's memory and to support children with Down syndrome 0 - 5 yrs and their families here in the Hunter. That will take a little time, so for now Down Syndrome NSW is assisting by accepting donations named 'In Memory of Ryder Manulat' until the foundation is established and able accept donation directly.

Tuesday, 17 June 2014

Ageing Well - a UK Learning Disability Week project

This week is Learning Disability Week in the UK (where 'learning disability' is the commonly used term equivalent to 'intellectual disability').

The British Institute of Learning Disabilities is marking the week with a series of five emailed newsletters ' focusing on promoting a better understanding of the lives and needs of older people with a learning disability.

The first issue is introduced with a brief explanation of the aim of the project:
We decided to focus on this topic as delegates at a recent seminar told us that there needed to be more done to promote the issues relating to good support for older people with a learning disability. So we're starting now!
Issue 1, Understanding the lives and needs of older people with a learning disability - what do older people say?
Today we focus on what older people are telling us about what is important to them and we're also looking at some of the background information about support for older people with learning disability.
Issue 2, Understanding the lives and needs of older families and family carers
... Many older family carers worry that their son or daughter is living a prematurely ‘old’ lifestyle because they share the social networks of their parents. As family carers grow older, and sometimes frailer, their social and support networks shrink exposing them to the risk of growing isolation (Magrill 2007) ...
Issue 3, The challenge for providers in planning and delivering good support for older people with learning disabilities
... There was a realisation by some staff that they perhaps don’t record all of the information they know about people’s lives, history, what’s important to them, what makes a good and a bad day, so that if they weren’t there someone else would at least know what was important to the person, important routines etc ...
Issue 4, Delivering good health, wellbeing and dementia support for older people with learning disabilities
... People with learning disabilities share many of the same age related physical and psychological changes as other older people. People with learning disabilities are, however, 2.5 times more likely to have health problems than other people but are often poorly served and discriminated by health services (Department of Health 2001; Emerson and Baines 2010; Mencap 2012) ...
Issue 5, Delivering good support for older people with learning disabilities - what next?
We've been delighted by the many responses we've received to this year's learning disability week work around ageing and people with learning disabilities. The responses on Twitter, Facebook and by email have made clear that raising these issues have struck a chord, both for individuals and organisations ...
Of course, similar issues arise for older people and their families here too, and this series is a useful introduction to BILD's existing resources designed to support older people.   Scroll to the bottom of each issue for links to subscribe, and/or follow BILD on Facebook.

Voice: the national journal of Down Syndrome Australia

Voice is the members’ journal of Down Syndrome Australia. Issues are published in May, August and December.

In the next issue of Voice we will be launching a Letters to the Editor section and would love it if members sent in short letters up to 250 words. You could make a comment about an article you have read in Voice, about an issue raised by the journal, or an idea you may have for the journal. It will be the editor’s decision whether to publish letters.

The guidelines for the various sections of Voice are here, if you would like to submit a contribution.

We'd love to hear your feedback on the most recent issue of Voice (May 2014), which had an early intervention theme.

Monday, 16 June 2014

'Ramp Up' will stop publication on 30th June

A message from the Ramp Up team
Stella Young and Karen Palenzuela, Ramp Up, 5th June 2014
After much speculation about the future of Ramp Up since the Federal Budget announcement, we have some news to share.
Over the last three and a half years, Ramp Up has published over 500 pieces of original content, facilitated discussion on a broad range of disability issues, developed a strong social media presence and, perhaps most importantly, published stories and perspectives that put forward a strong case for the establishment of the NDIS. We've also had the honour of publishing great work from many talented, emerging writers with disability.
As many of you are aware, in 2010 the ABC received funding to establish an online destination to discuss disability in Australia. The funding came from the Department of Families and Housing, Community Services and Indigenous Affairs, which is now the Department of Social Services. Our current contract with DSS finishes on 30 June this year and has not been renewed ...

Disability dissent silenced as ABC’s Ramp Up scrapped
Shakira Hussein, Crikey, 6th June 2013
Abolishing the ABC’s Ramp Up, a national platform for disabled voices, looks like an attempt to suppress dissent at a crucial moment for the sector, writes Shakira Hussein.
Registration (free) is required to read the whole article.

People With Disability Australia, Change, 23rd May 2014
Preserve the ABC Ramp Up website. The only consistent voice for people with disability in the mainstream media ...

Medication, TEAMS!: two new issues of Service, Support and Success

Two new issues of this excellent Canadian publication are now freely available online:

Service, Support and Success is a monthly newsletter designed for direct support workers supporting people with intellectual and developmental disabilities. It is published by Vita Community Services (Toronto, Canada), under the editorship of Dave Hingsburger and Angie Nethercott. 

How many medications do you take each day? How did you decide to take them, and how do you know they work? How bad are the side effects, and what do you do to tolerate them?

One last question: What would happen if you were unable to ask yourself any of these questions or if no one helped you figure out the answers? ...

... Our team has been asked several times questions like: “What’s your secret?” and, “How did you become such a strong team?” Agencies that want to open similar treatment residences ask, “How do you keep staff?” Again, there is no secret, but here is what we have identified that makes us truly a TEAM ...

Service Support and Success is well worth the (free) subscription or a bookmark if you work with or are interested in supporting people with intellectual disability.

Friday, 13 June 2014

Weekend reading and viewing: 14th - 15th June 2014

Living with Down syndrome 
The Feed, SBS 2 TV, 11th June 2014 (7m 48s)

How is he doing?
Jennifer Jacob, Blessings Beyond the Ordinary, 9th June 2014
A loaded question that causes me to stop and think nearly every time.

"How is he doing?"

This comes up in many different venues from close friends or family to complete strangers that seem to be in on our little extra chromosome secret. Why is it loaded? Mostly because there are a million ways, it seems, to answer the question. Also, because I sometimes find myself more questioning the intent of the question, rather than taking it as just a question ...

Tale of Inclusion: Down Syndrome and Violence at the Play Area
David Perry, How Did We Get In This Mess, 29th May 2014
... at a public play-place her son was hurt by a child with DS and she didn't know what to do about it, because how can you blame a child with DS for anything? I offer the comment in full and then my response ...

How Long Can We Wait for Inclusive Education?
Think Inclusive (Podcasts) #10, January 2013
(Tim Villegas) had the pleasure of visiting with Cheryl Jorgenson one evening in January of this year ... discuss(ing) why it has taken so long for inclusive education to catch on in the United States and what needs to happen to break the barrier for it to become part of best practices for education. She even gives me advice on whether I need to quit my job or not. You will not want to miss her surprising answer ...

My Perspective Photography Award (UK) - winners announced
DSA (London, 5th June 2014
Congratulations to outright winner, Stephen Thomas, and equal second place winners, Tim Beale and Rosika Edmund.  All 25 award winners and runners up entries can be viewed online. The runners up include Carlos Biggemann, who now lives in New Zealand, and attended school in Sydney for some time.

Budget impacts for people with disabilities and their carers: emerging details

Bursaries for Young Carers
The Commonwealth Government plans to commence the Young Carer Bursary Program in January 2015. There will be 150 bursaries valued at up to $10,000 each to assist young carers (under 25 years) continue their education.

Currently little detail is available about the application process.  We will be keeping a watch on the websites of Carers Australia  and Young Carers for further information.

  • Currently in Australia it is estimated that 380,000 children and young people help care for relatives.

Opinion: People with disabilities need a champion that understands their lives
Ron McCallum, The Age, 30th May 2014
The decision by the Abbott government to stop funding a disability discrimination commissioner is a blow for people living with disabilities who still need someone to champion their cause. The move is also short-sighted and counter-productive given the government's own stated aim of improving employment for people with disabilities and Australia's internationally recognised role as a standard bearer for people with disabilities ...
  • Ron McCallum AO is an Emeritus Professor and former Dean, Faculty of Law, University of Sydney, and Senior Australian for the Year 2011.

Pensioners $1600 study aid to be axed
Patricia Karvelas, The Australian, 29th May 2014
More than 41,000 people will lose up to $1622 a year with the axing of a little-known pensioner education supplement. The supplement provides finan­cial help for full or part-time study in a secondary or tertiary course at an educational institution approved by the federal government. It is paid to people on support, including disability support pensioners, Parenting Payment single recipients, carers and widows ... According to data provided to the Senate last month, 41,000 people will lose payments of up to $62.40 a fortnight. Nine out of every 10 people impacted will be disability pensioners or single parents ...

Disabled people likely to face $7 GP payments despite Hockey's assurances
Lenore Taylor, The Guardian, 21st May 2014
The budget does exempt doctors’ visits listed as “chronic disease management items” from the co-payment, but these are likely to be only a very small proportion of the visits to the doctor by someone with chronic health problems ... AMA president Dr Steve Hambleton said “people with chronic disease are likely to pay the co-payment for most of their normal visits to the doctor, which would be considered standard consultations.” ... But he said doctors were worried about its impact on the most disadvantaged patients they saw - very low income earners especially those with chronic conditions ...

Thursday, 12 June 2014

Advocacy and rights: news and opinion

Young Disability Leaders Join UN Conference
ProBono Australia News, 11th June 2014
The Australian Human Rights Commission has sent a delegation of young people with disabilities to the United Nations Conference of States Parties (COSP) in New York. The delegation is led by Therese Sands, Co-Executive Director, People with Disability Australia and Rosemary Kayess, Chairperson, Australian Centre for Disability Law (ACDL).

“These young Australians are considered to be emerging leaders in the disability movement in Australia. This trip is a unique professional development opportunity where the delegates are provided with training and mentoring as the next generation of young disability rights advocates to represent the Australian disability sector at the UN,” Therese Sands said ...

George Xinos, Sourceable, 6th June 2014
... The AHRC Disability Discrimination Commissioner’s role is ... pivotal in achieving the objects of the (Disability Services) Act and relevant Disability Standards and significant concern has been consequently aired in recent weeks. Some of this concern has centred on the capacity of another commissioner to adequately address the needs of people with disabilities, their families and networks on the basis of resources alone. Innes himself, has also suggested that having a commissioner responsible for disability discrimination and not having a disability themselves is an issue. He says that, as the Sex Discrimination Commissioner should be a woman and the Aged Discrimination Commissioner should be an older person, the commissioner responsible for disability discrimination should also have the ‘lived’ experience of disability in order to be able to fulfil his or her role effectively ...

Why visibility matters to disability
Prof Gwynnyth Llewellyn and Prof Eric Emerson, Ramp Up, 3rd June 2014
Professor Gwynnyth Llewellyn and Professor Eric Emerson say the government's decision not to renew the position of Disability Discrimination Commissioner abandons decades of effort in making visible the discrimination and disadvantage experienced by many ordinary Australians.

Bill Shorten urges Tony Abbott to reinstate disability discrimination commissioner
James Massola, Matthew Knott, Sydney Morning Herald, 22nd May 2014
Five members of the Australian Human Rights Commission have lashed the government for ripping $1.7 million out of the organisation and defunding the disability discrimination commissioner role ...

A survey for the NSW Attorney General and Justice Department

During June, Taverner Research is completing a study of people with disabilities on behalf of the NSW Attorney General and Justice Department, and we have agreed to let our members know about it, in case you would like to take part:
We would like your opinion.

If you have a disability and have been in contact with any of the services listed below in the last 12 months we would like to talk to you about your experiences: 
  • Anti Discrimination Board 
  • The Administrative & Equal Opportunities Division of NCAT – the NSW Civil and Administrative Tribunal 
  • The Guardianship Division of NCAT, formerly the Guardianship Tribunal 
  • Law Access 
  • Local Court 
  • NSW Trustee and Guardian Financial Services section 
  • Registry of Births Deaths & Marriages 
  • Victims Services. 

What you tell us will help to improve these services for people with disabilities. 
  • The study will be conducted in April through to June 2014. 
  • We will need about 1 hour of your time. 
  • We will organize to talk to you by telephone or over the internet or we might be able to talk to you at a location close to your home to make it easy for you to get to the interview if that would work better 
  • You are welcome to bring an advocate to the interview. 
  • As a thank you we will give you an $80 gift voucher. 
  • The study is confidential so we will not tell anyone you have participated in the study. 

If you would like to take part or would like to know more about the study please call Richard of Taverner Research on 1800 212 290.

If you prefer you can email us at to tell us you would
like to take part.

Thank you. 

Wednesday, 11 June 2014

Down Syndrome NSW Calendar 2015 - photo time!

DS NSW members - it's time to start sending in photos to be included in the Down Syndrome New South Wales 2015 Calendar. The theme - "Be Seen in 2015"

Craig Peihopa has very kindly offered to put together another wonderful calendar for us for 2015 and we need you to send in your photos to make it the best one yet!

Please email your digital images to to be included. We would prefer JPEG files, along with the name of the person with Down syndrome in the photo (first and last name please). Maximum of 8 images. Preference will be given to images that are in focus and showcase the person with Down syndrome.

Photographic prints will be accepted. Prints to be sent to our postal address:
Down Syndrome NSW
P.O. Box 107
Northmead NSW, 2152.
If there are other people in the photo we require your emailed assurance of each person’s permission to publish the image. Due to limited text space the photo will be labelled in the calendar using the name of the person with Down syndrome, along with brief text about any others in the photo (e.g ‘John Smith and friends’, ‘John Smith and Grandma’, ‘John Smith and family’, etc).

Latest additions to 'events' pages

These events have been listed on our Other 2014 Events (i.e. not Down Syndrome NSW events) page:

Choosing Employment: Youth with intellectual disability
National Council on Intellectual Disability and NSW Council for Intellectual Disability - forums for youth with intellectual disability, their families and teachers
Six forums across Sydney locations: 17th - 21st June 2014

Foundations Forum workshops on Social Role Valorisation (SRV)
2-Day Introductory SRV Workshops 
15 - 16 July 2014 - Newcastle
5 - 6 November 2014 - Sydney
Passing: 5-day Advanced SRV Workshop 
25 - 29 August 2014 - Sydney

6th August 2014 - Revesby (Sydney)

Getting the Best from the NDIS - making it work for people with intellectual disability
NSW Council on Intellectual Disability - register your interest by emailing
August 28 and 29 2014 - Newcastle

Down Syndrome International Swimming Organisation
Team Australia 2014 - Down Syndrome Down Under Swimming Organisation
7th - 15th November 2014 - Morelia , Mexico

Tuesday, 10 June 2014

Congratulations: Richard Wilkins AM

Comedy is King fundraiser, 2009
Our congratulations to Richard Wilkins, who has been a great support to Down Syndrome NSW over many years, both through his fundraising activities and  by speaking about his son, Adam:

Wilkins 'blown away' by Queens Birthday honour
AAP, 9th June 2014
Television presenter Richard Wilkins says he's blown away after being recognised in this year's Queen's Birthday honours list. Wilkins has been made a member in the general division of the Order of Australia (AM).

Best known as a veteran entertainment reporter, Wilkins also supports charities such as the Cerebral Palsy Alliance, Cure for Life Foundation, Sony Foundation, Autistic Association and the Down Syndrome Association.
... He has said his eldest son Adam, who has Down Syndrome, is the inspiration for his philanthropic work.

7th Down Syndrome International Swimming Championship: Mexico, November 2014

Down Syndrome Down under Swimming Organisation is deep in preparation with the swimmers chosen for Team Australia 2014, to represent Australia at the 7th Down Syndrome International & World Championship to be hosted by the Down Syndrome International Swimming Organisation in Mexico in November.

Lucy Dumitrescu and James Lawrence from NSW have been named in Team Australia 2014, which will compete against swimmers from 15 other nations. Both James and Lucy also represented Australia in Italy at the 2012 international championships. Lucy has a long record as a national representative in Ireland (2006), Portugal (2008), and Taiwan (2010).

You can read James and Lucy's athlete profiles, and those of all Team Australia members here. Congratulations, and we wish you all the best for your training and competition in Mexico.
7th - 15th November 2014
Morelia, Mexico

Monday, 9 June 2014

Focus group about what makes a good mental health professional

From 3DN (Department of Developmental Disability Neuropsychiatry, UNSW):

What is this project about?

3DN at the University of New South Wales wants to improve the quality of mental health care provided to people with an intellectual disability. We have a project that aims to identify the qualities that mental health professionals need to provide high quality care to people with an intellectual disability.

Who can participate?

Family members, friends, advocates and other people who support a person with an intellectual disability and co-occurring mental ill health.

What will it involve?

Participation will involve attending a focus group. This will take approximately 2 hours.

During this focus group you will talk with other family members and support people about what qualities make a good mental health professional.

What will this information be used for?

This information will help us to know what the workforce needs to learn and do to provide high quality mental health care to people with an intellectual disability.

What do I do if I would like more information? What do I do if I am interested in participating?

Please contact Beth Turner, Project Officer, on (02) 9385 2208 or

DSA congratulates chairman, Angus Graham OAM

Down Syndrome Australia (DSA) is delighted to congratulate our inaugural Chairman, Mr Angus Graham, on being awarded the Medal in the Order of Australia in the 2014 Queen’s Birthday Honours.

Mr Graham was instrumental in bringing Down Syndrome Australia to life three years ago and in his time as Chair has steered the organisation through many challenging times.

Angus has brought both professional expertise and personal passion to the role, and has dedicated countless hours to ensuring the voice of people with Down syndrome and their families is heard on the national stage.

Friday, 6 June 2014

Weekend reading, listening and viewing: 7th - 8th June 2014

I love grilled cheese (3m56s)

Rebecca Bradley, Irish Times, 2nd June 2014
Her story is not flashy, or headline-worthy. Her name will not be in any history books. If she walked past you on the street, you wouldn’t notice her any more than other passers-by ..,

What if she lives with us forever?
Ellen Stumbo, Finding Beauty in My Brokenness, 10th May 2014
Call me crazy, but one of the first thoughts that crossed my mind when my daughter was born with Down syndrome was, “Will she live with us forever?” When my oldest was born, a typical baby girl, those thoughts would have felt so…outrageous! I mean, who thinks about their child moving out the day they’re born?

Why my daughter's birthday shames those who think people with Down's are not fit to live
Dominic Lawson, Daily Mail, 2nd June 2014
... I had no idea what to expect when she was born; but because I was concerned that people would not know whether to commiserate or congratulate, I wrote an article saying that it should be the latter — and how happy I was that her much-loved elder sister had a sibling. On the whole, the reaction of readers was positive, but a small number said something to the effect of ‘She may be a beautiful and loveable baby now, but just wait until you see what a teenager with Down’s is like’ ...

Should we be frightened of disability? (Audio file 10m)
Tom Shakespeare, A Point of View (BBC Radio 4), 30th May 2014
Many people assume that disabled people must be unhappy. But the empirical evidence doesn't back this up. In A Point of View, Tom Shakespeare argues that disability is nothing to fear.
'Life skills' program teaches wrong lesson
Stella Young, Ramp Up, 2nd June 2014
Is it any wonder that rates of violence are so high when young women with disabilities are being taught that they have no say in what happens to their bodies?

David Morstad, Apostrophe Magazine
Do you ever look at someone and make assumptions about the kind of person they are? Of course you do. We all do. Chances are your assumptions are inaccurate; but then, so are the assumptions of others about you ...

2014 National Disability Awards nominations now open

The National Disability Awards recognise people across a wide range of sectors who are working to provide opportunities for economic and social participation for people with disability.

Nominations for the eighth annual Awards opened on 3rd June and close on 18th July 2014.

The Awards are one of the ways people can encourage support for people with disability and increase awareness of the benefits of extending more opportunities for people with disability to be included in work and society.

This year there are eight Award categories, each highlighting an area where champions of people with disability are making a difference.

The 2014 National Disability Awards will be presented at Parliament House in Canberra on Tuesday 25 November 2014.

Thursday, 5 June 2014

Turnips and the NDIS ...

The Laughing Turnip
This short, original video was a hit with the audience when it was used as part of a service providers' conference presentation by Jackie Softly and Samantha Connor, this week in Sydney. 'The message, to service providers, is that rebranding and re jigging your agencies isn't enough if you're serving the same old services. People need choice and good information so they can make informed choices regarding their services under the NDIS.'

We can put you in touch with Jackie and Sam if you want to know more about their work (or to contact the actors for a project!).

With the advent of the NDIS and a new direction in self directed services, some service providers are choosing to do new things in a way that their customers want. But what happens when you 'rebrand' and keep the status quo?

Library and resources: 5th June 2014

Inclusive High School Education - Jacob's Story
If your child with Down syndrome is in the mid to upper years of primary school, you will be thinking about high school.

Family Advocacy's video about the transition of Jacob, a young man (who has Down syndrome) into the local public high school, on the NSW North Coast, is told largely by his mother, Annette Bush, with input from his high school teachers and principal:
At the end of the video are links to a further three shorter clips highlighting particular points about schooling that parents consider to be important.

Choice, Independence and Best Interest
Resourcing Families latest webinar about decision making and choice with Dr Michael Kendrick titled Choice, Independence and Best Interest. Explores key principles and ideas to support a person with disability to make decisions in their life.

Members' library
The Down Syndrome NSW library catalogue is available to view here.