Address details

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

Tuesday, 24 December 2013

Saturday, 21 December 2013

Weekend reading and viewing: 21st - 22nd December 2013

Music to my Ears
Christie Hoos, Down Syndrome Research Foundation (Vancouver), 17th December 2013
It projects across the room, flat and forced, more like yelling than singing. It’s a step, or two, behind the rest. A discordant echo chasing lyrics that roll off nimbler tongues with ease. It’s one of the most beautiful sounds in my world ...

Students with and without disability: it’s always better when we’re together
Kathy Cologon, The Conversation, 17th December 2013
... Genuine inclusive education can and does happen. But at the moment in Australia we do not have inclusive education for all students. Many students who experience disability continue to be denied equal access to inclusive education from early childhood through to adulthood ...

Mommy confession: I only see Down syndrome
Maureen Wallace, She Knows - Parenting, 17th December 2013
.. For some, the moment of actually “seeing” their child’s Down syndrome came when they had another child without Down syndrome. Suddenly, the differences popped out and they found themselves obsessing over what others could see and what others focused on.

The heartbreaker is that we all strive so hard to help society see past our child's extra chromosome. So what does it mean when suddenly it's all we can see? ...

All I want for Christmas is ...
Paul, (Emily's Dad), Orange Juice Flavour Sky, 6th December 2013
I was sitting on the settee with Emily last week and I noticed she was writing for all she was worth – smoke bellowing from the tip of her pen as it screeched across the page, line after line after line of her notebook ...

Accessible Arts December 2013 eNewsletter

Human Rights Commission partners with global law firm DLA Piper to advance human rights
Disability Rights Blog, 16th December 2013
Global business law firm DLA Piper has worked in partnership with the Australian Human Rights Commission to address issues facing people with disabilities wanting better access to Australia’s criminal justice system ...

Summer reading and viewing

There will be a two week blog break over Christmas - New Year. If you are looking for some reading and/or viewing during the summer,  delve back into the archives a little:
  • For something really good to look at read about, you can't go past one of our favourite websites discovered earlier this year, Oliver Hellowell. The photography is beautiful, and the story of a young man with Down syndrome honing his skill, developing his craft and art ,is well worth following. You might even want to own some of his work.
  • The link  about these excellent videos was posted just yesterday (twice) - we wouldn't want you to miss it ...
Living a Good Life -  Personal Support Networks (6 videos, online)  Southern Cross University, 2013 (Supported by a grant from the NDIS Practical Design Fund)In these six videos (about 15 minutes each) people with disabilities and their personal network members explain their experience of living a good life.
  • There are many links to timeless stories in our weekend reading and viewing lists. You can access all of 2013's Weekend reading and viewing lists via this link.  If you want to go further back, the 2012 Weekend reading and viewing lists are here.
Happy reading, viewing and holidays.

Friday, 20 December 2013

People with Down syndrome in the media

Living a Good Life -  Personal Support Networks (6 videos, online)
Southern Cross University, 2013 (Supported by a grant from the NDIS Practical Design Fund)
In these six videos people with disabilities and their personal network members explain their experience of living a good life. The support strategies, opportunities, benefits, outcomes and challenges that emerged when people with a disability, their families and allies effectively exercised control and choice.
Three of the people telling their stories, Victoria, Tom and Brenton, have Down syndrome. Each video is about 15 minutes. Also available as podcasts, and on DVD.
EIleen O Daday, Daily Herald, 9th December 2013
... Over the last year, 12 adults with Down syndrome have begun volunteering at the hospital, in the food and nutrition area, pediatric therapy department and gift shop — even the childbirth education department and the Adult Down Syndrome Center itself, greeting and escorting patients ...

Realtime Arts, Dec- Jan 2013
Lorcan Hopper from Restless Dance Theatre, Adelaide, is featured in the cover photo. The link includes an article about a new production.

Madrid-based director Rob Tannion will make his new work Salt for Adelaide's Restless Dance Theatre
Loueen Nunn, The Advertiser, 15th December 2013
Another article about restless Dance Theatre's new director and work, along with another fabulous photo of the dancers.

Ballarat athletes taste success at special olympics
The Courier, 17th December 2013
David Hamilton is one of the Ballarat athletes from the recent Asia Pacific Games featured in this story and another fabulous photo. ... Hamilton said the best part of the experience was receiving the medals. “The games were great. I made new mates and I want to thank my supporters.”

(US) National Down Syndrome Congress Film Expert Reviews “Frozen”
T. Chess Mitchell, Staff member at NDSC and Expert on Movies Chess has recently reviewed the Holiday movie Frozen ... These are his findings ...
Frozen is scheduled for release in Australia on 26th December 2013

News and commentary on the NDIS (13)

You can change the name, but the scheme must remain
Every Australian Counts, 13th December 2013
Following the COAG meeting today, Prime Minister Tony Abbott has announced that the National Disability Insurance Scheme (NDIS) ‘launch sites’ will be renamed ‘trial sites’. 
The term ‘launch’ was initially selected over the term ‘trial’ by the Productivity Commission as a message to the community and policy makers that there would be no turning back once the rollout of the NDIS began ... read the full statement here.
Prepare for a cheaper, slimmer NDISAnnabel Crabb, The Drum (ABC News), 17th December 2013
Joe Hockey has given his strongest hint yet that the NDIS may be joining the NBN as a piece of national infrastructure that the Coalition wants to deliver at a lower cost ...

Senator Mitch Fifield,Melbourne, 18 December 2013
The Council of Australian Governments (COAG) Disability Reform Council (the Council) met today in Melbourne. The meeting was chaired by Senator the Hon Mitch Fifield, Assistant Minister for Social Services, and Senator the Hon Arthur Sinodinos AO, Assistant Treasurer. 
All jurisdictions reaffirmed their strong commitment to implementing the National Disability Insurance Scheme (NDIS) across Australia ... read the full text of the Communiqué here
NDIS is investment in Australians
Every Australian Counts, 18th December 2013
The Every Australian Counts campaign for the NDIS welcomes the statement from Minister Fifield this afternoon that: “The Coalition is committed to delivering the National Disability Insurance Scheme in full.” 
John Della Bosca, Every Australian Counts Campaign Director, said: “We can all assume that every Australian expects the NDIS to run efficiently and at the lowest cost to taxpayers. Every Australian also expects our parliament to deliver the NDIS in full as promised ... We know we have strong advocates in Prime Minister Abbott and Minister Fifield as well in Opposition Leader Bill Shorten and Shadow Minister Macklin. They have proven their passion about improving the lives of people with disability and their families" ... read the full statement here

Nine News, 18th December 2013
Finance minister Mathias Cormann insists the federal government has not withdrawn its support for the national disability insurance scheme (NDIS) ...

The NDIS should be referred to as an investment, not a costStella Young, Ramp Up 18h December 2013
... The Productivity Commission report stated that an NDIS would result in an additional 320,000 people with disabilities employed in 2050, which translates to an additional $32 billion or one per cent of GDP. Additionally, people who are currently locked out of the employment market because they are unpaid carers for family members with disabilities can join the workforce. ... An estimated 80,000 people will be employed to provide direct support to people with disabilities, bringing with it a $1.5 billion increase in GDP ...

NDIS: disability commissioner warns against cutbacks
The Guardian, 18th December 2013
Australia's Disability Discrimination Commissioner, Graeme Innes, has warned the government against feared cutbacks to the national disability insurance scheme (NDIS), saying he did not want “people having only two showers a week” and being “effectively stuck in their homes” ...

Govt says NDIS will not be part of funding cuts
Louise Yaxley, The World Today (ABC Radio) 18th December 2013
... the Federal Government is insisting today that it will not cut any of the funding that it's announced for the National Disability Insurance Scheme, despite its tough talk over the state of the budget.

Lexi Metherell, AM (ABC Radio) 19th December 2013 
The Federal Government is being warned against overreacting to signs of higher than expected costs in the National Disability Insurance Scheme (NDIS) ...

Anne Stephens and India Bohanna, The Conversation, 18th December 2013
... Without political will and bi-partisan commitment from all tiers of government to address the chronic gaps in infrastructure and health-care delivery, the NDIS scheme can’t deliver on its promises in very remote Indigenous communities ...

People supported from the fringe into the NDIS
NSW CID E-News, December 2013
NSW CID continues its advocacy for the NDIS to reach out and be responsive to people with intellectual disability living isolated lives on society’s fringe – people who are unlikely to know about the NDIS and seek assistance from it. 
The Intellectual Disability Rights Service has also been active on this issue and has recently supported some of its clients in Newcastle to get funding packages from the NDIS launch site. The key factor here has been that the IDRS worker has the trust of the individuals and has supported them right through the NDIS eligibility and planning processes. 
This kind of trusted support may be essential for people on the fringe to access the NDIS. NSW CID is taking up with the NDIS how to ensure this support is available.
Choice, control, and inequality
Professor Eric Emerson, Ramp Up, 13th December 2013
Although the NDIS has choice and control embedded in its philosophical foundations, there is a risk it will simply benefit people with disabilities who are already more advantaged, writes Professor Eric Emerson ...

National Disability Insurance Scheme News, Issue 5 - December 2013

Living a Good Life - Personal Support Networks (6 videos, online)
Southern Cross University, 2013 (Supported by a grant from the NDIS Practical Design Fund)
In these six videos (about 15 minutes each) people with disabilities and their personal network members explain their experience of living a good life.

Breaking Down Barriers  - online video of a webinar 
NDIS, 10 December 2013
The National Disability Insurance Agency held an interactive webinar on Tuesday 10 December. People with disability, carers, advocates, support providers and community members contributed to a lively discussion about breaking down barriers.

Thursday, 19 December 2013

(NSW) Disability Inclusion Bill 2014 - have your say

This might not be your first choice in reading over the summer holidays, but if you want to give some feedback, the submission date is 14th February 2014.  From NSW Ageing, Disability and Home Care:

Have your say on the Disability Inclusion Bill 2014  
The NSW Government is committed to improving the lives of people with disability, their family and carers. 
As a part of that process, disability law in NSW is being reviewed. 
We are asking for feedback on a new disability law to be introduced in Parliament next year.
You can read the draft Bill online here. Resources are provided to help you give your feedback, including an Easy Read Information Booklet, and a link to an online forum where you can comment on the draft law.

Library/ resources Thursday: 19th December 2013

Online videos of presentations on Down syndrome and Ageing
Co-Directors of the Adult Down Syndrome Centre's clinic (in Chicago), Drs Brian Chicoine and Dennis McGuire, participated in a conference on Down syndrome and Ageing in September 2013. The Los Angeles event was sponsored by the (US) National Down Syndrome Society and the Down Syndrome Association of Los Angeles.

Links to five online videos of the presentations are here.

School Link Newsletter, December 2013 - on mental health and intellectual disability
The December 2013 issue of The Children’s Hospital at Westmead’s School-Link newsletter on mental health and intellectual disability in children and adolescents is now online.

Highlights include:
  • Draft Guidelines on the Pathways to Care for Children and Adolescents with Intellectual Disability and Challenging Behaviour and/or Mental Health Problems. David Dossetor  Access to Allied Psychological Services (ATAPS)
  • Report on the Society for the Study of Behavioural Phenotypes Conference Dr Peter Wurth
  • Using the Positive Behaviour for Learning Framework. Leanne Neville
  • Collaboration: not the Emperors New Clothes. Terry Sarten
  • Neuropsychological Profile of Children with Autistic Spectrum Disorders. Dr Phil Ray
  • Neuroscience of caregiving: a seminar with Dr Daniel Hughes. Anders Hansson
  • Personalised Learning and Support for Students with Additional Needs: Every Student Every School. Katrina Worrall
  • The Medicine Cabinet. Clonidine Judy Longworth
Back issues of this excellent publication are available online here. The School Link team invites readers to circulate the newsletter to anyone else who might be interested.

All About Sex - new book edition
Family Planning NSW bookshop, $10 introductory price
All About Sex is for people with intellectual disability and the people who support them. It is easy to read and includes illustrations to help people with intellectual disability learn about sexuality and relationships. It covers a range of topics including bodies, relationships, sex, pregnancy and reproduction, sexual health and sexual assault. 
Some people with intellectual disability will be able to read the book independently but most will need the support of a family member, teacher, support worker or advocate.

Transition to Retirement: A guide to inclusive practice - new manual for practitioners
Roger Stancliffe, Nathan Wilson, Nicolette Gambin, Christine Bigby and Susan Balandin, University of Sydney Press, 2013 ($25.00)
Based on a 3-year ARC Linkage research project plus several years of service delivery experience, this manual provides disability practitioners with detailed practical information about how to effectively support older people with long-term disability (such as intellectual disability) to join mainstream community groups or volunteering groups.

The manual (is designed to accompany) the Transition to retirement DVD. This 63-minute DVD includes the individual stories of six men and women with long-term disability in their 50s, 60s or 70s who reduced their days of work at an Australian Disability Enterprise (“sheltered” employment) and took up new enjoyable socially inclusive activities to prepare for retirement. These stories provide role models and give concrete examples of varied opportunities for inclusive occupation and companionship. The DVD makes the idea of inclusive activities in retirement easily understandable to people with disability, their families and community organisations.
(NSW CID E-Newsletter, December 2013)
Both the Transition to Retirement manual and DVD can be ordered online here.

Wednesday, 18 December 2013

2014 events: Down Syndrome NSW and others

Image: Dreamstime
Down Syndrome NSW has released a draft schedule of events for 2014, including education and development opportunities. 

Dates and venues are to be confirmed and other events are expected to be added to the draft schedule. Events kick off in February, so keep the schedule handy.

A 2014 events page has been posted for this blog (the permanent link is just below the banner, above) - it will be updated as more events are notified, and will be out principal means of linking to the many events run by other organisations  that will be of interest to our readers during 2014. The first events listed are scheduled for January 2014.

Details of Down Syndrome NSW activities and events, and specific national and international events, will continue be notified in individual blog posts as well.

Research news and commentary update #11 for 2013

Archery, Jellyfish and Down Syndrome Research
Kelly Higgins-Devine, Afternoons, ABC Radio Brisbane) 26th November 2013
If you were to guess the things that may help memory and brain function in people withDown Syndrome, would you ever have thought of an ingredient that used to be in cough medicine? The same ingredient BTD-001, was used in the 1980s to help people with senile dementia until medical regulations changed. Audio file (6m 35s)

Dr Cameron Cooke is an orthopedic and trauma surgeon at the Princess Alexandra and Mater hospitals and principal investigator with the research project. He spoke with Afternoons presenter Kelly Higgins-Devine about the compound and what it could mean to people with Down Syndrome.

Linking Alzheimer's and Down Syndrome
Lisa Marshall, Colorado University Medicine Today, November 2013
Is Alzheimer’s disease an acquired form of Down syndrome?
That question, so provocative in 1991 when Huntington Potter, PhD, first posed it that fewer than a dozen research groups around the globe dared explore it, today is sparking renewed interest in the scientific community as evidence grows stronger that the two conditions are inextricably linked ...

UC San Diego Launches Unprecedented Down Syndrome StudyUC San Diego Health System, 16th December 2013
To many, Down syndrome (DS) is a childhood condition. But improved health care means that individuals with DS now routinely reach age 50 or 60 years of age, sometimes beyond. However, if they live long enough, people with Down syndrome are almost certain to develop Alzheimer’s disease (AD).

Risk estimates vary, but the National Down Syndrome Society says that nearly 25 percent of individuals with DS over the age of 35 show signs of Alzheimer’s-type dementia, a percentage that dramatically increases with age. Almost all develop dementia by the age of 60.

“The more we learn about Down syndrome and Alzheimer’s disease, the more we realize these conditions – one seen at birth, the other quite late in life – are two sides of the same coin,” said William C. Mobley, MD, PhD, professor and chair of the Department of Neurosciences at UC San Diego School of Medicine ...

New genetic screen for Down syndrome to reduce risks of invasive tests
Curtin University (Western Australia), 16th December 2013
... “Our study sought to analyse how cost-effective it would be to include a new non-invasive prenatal test as a second-tier test to provide a more accurate risk estimate, prior to offering invasive testing.”

The study reviewed 32,478 single baby pregnancies screened between January 2005 and December 2006 in Western Australia and found by including the new non-invasive test, the number of invasive diagnostic procedures and procedure-related miscarriages would have been reduced in high-risk women by 88 per cent ...

Research participants needed!
Lynette Roberts from University of NSW is seeking people aged between 18-60 with Down Syndrome to participate in a research study on memory development in adults with Down Syndrome.

The study is a once-off session on-campus, parking is free and you will receive a $20 Coles-Myer gift certificate. The participant will also get to choose a gift to take home at the end of the session.

For further information, please contact Lynette Roberts on 0405 721 076 or at

Tuesday, 17 December 2013

Tuesday Chatter on Facebook

The last Tuesday Chatter for 2013 is in session on the Down Syndrome NSW Facebook page.

The topic is, naturally, holidays ... tips for promoting family fun and reducing stress for a successful

You are welcome to join in by contributing your thoughts or questions as a comment to today's Facebook status.

Jobs at NSW Council on Intellectual Disability

Are you, or someone you know, looking for a new job in the disability field for next year?

NSW Council on Intellectual Disability and My Choice Matters (MCM) are currently looking for people who would be interested in a number of positions:
‘Run Projects’ Coordinator - To coordinate and support grant applicants for the ‘Run Projects’ initiative, providing opportunities for people with disability.
Community Engagement Officer - To lead, develop and grow a presence for MCM in community by building connections, relationships and networks across New South Wales.
Senior Facilitator - To facilitate groups, support and manage other facilitators and mentors of the 'Become A Leader' Initiative of MCM. 
Accounts Officer - Provide financial support to MCM, including the Run Projects program.
NSW CID Information Officer - A skilled communicator is needed to join the NSW CID information service team.
Please Ethical Jobs Australia website and search under 'NSW CID' for full job descriptions. All application close on 6th or 7th January 2014.

Source: NSW CID E-News, December 2013

Monday, 16 December 2013

Careflight's Christmas Magic Mania

CareFlight would like to invite any children with special needs and their families to "magic mania” performance:

Saturday 21 December 2013
Sydney Olympic Park Sports Centre, Homebush

There are three available show times commencing at 12.30pm, 2.30pm and 4.30pm. 
Those needing assistance need to arrive at least 30 minutes prior. 

These free tickets are made possible by the generosity of your local business and professional people. 

Contact Ilona Techmanski during business hours on 9699 3925 for more information. 

For your free tickets please email or fax 9690 1280. 

Please include your name and contact number, the number of tickets you require, the time of the show you want to attend, the organisation from whom you received the information and your postal or email address.

Mental health and intellectual disability: recent papers and presentations from 3DN (University of NSW)

The Department of Developmental Disability Neuropsychiatry (3DN) at the University of New South Wales is generous in sharing its work online.  Recent online publications of interest to readers of this blog include:
Sign up to the 3DN Facebook page to keep up with latest news and events.

Saturday, 14 December 2013

Weekend reading viewing: 14th - 15th December 2013

No Visible Strings
Kate Trump O’Connor, Down Syndrome-Autism Connection, 12th December 2013
... Autism demands adjustments, even for cherished traditions. And so we have learned to snap a few photos, to let him give Santa a quick high five, to mix in some old favorites in the pile under the tree ....

Seeing Stars - John C McGinley
Reign Magazine, Holiday 2013
Interview with John C. McGinley, actor, father of 16 year old Max (who has Down syndrome), advocate and Global Down Syndrome Foundation board member.

Happy Tears: Why I Believe in My Daughter
Amy Julia Becker, Thin Places, 10th December 2013 
I kneel down. Penny and William are both in front of me on the couch. Both look a little puzzled by my tears. I clasp their hands. “Happy tears. Happy tears,” I say ...

How I Told My 7-Year-Old Son He Has Down Syndrome
Kari Wagner-Peck, Huffington Post, 11th December 2013
... I am feeling my way here in a world that does not provide a manual for how you tell your kid they have Down syndrome ...

Telling Finn He Has Down Syndrome
Lisa Moreguess, Life asI know it, 11th December 2013
... Five years into this, I realize now that my earlier visions of a Big Serious Talk with Finn about his having Down syndrome were silly. It’s very unlikely that that’s how he’s going to learn that he has Down syndrome. What I imagine is far more likely is just that, over time, he will absorb the fact that he has Down syndrome merely by virtue of the fact that we don’t tiptoe around it ... We will answer his questions as they come up, but I can’t imagine some Big Announcement. It will happen organically ...

Breaking the Silence - Today History is Made
Dave Hingsburger, Rolling Around in my Head, 9th December 2013
... Today, in Ontario, for the first time, in any jurisdiction in the world, a government leader, the Premier of the province, will apologize to people with intellectual disabilities for the conditions in the institutions and for the lives that they had to live there. It will be an acknowledgement of a historical wrong. It will also be a very public acknowledgement that those with intellectual disabilities are a 'people' who have their own history, their own political concerns, and their own identity as a minority that suffers prejudice ...

Editorial, Newcastle Herald, 8th December 2013
... On all of its levels, the Newcastle Special Olympics was a resounding success. We can all take pride in its achievements.

United Nations Human Rights Day - Speech to the 2013 ACT Human Rights Day Panel convened by the United Nations Association of Australia
Craig Wallace, On the Record, 10th December 2013
... if we get it right then we will unlock the “exciting and brilliant” future for children with disability that President Mandela imagined eighteen years ago.

Friday, 13 December 2013

'2013 Formals' album

A gallery of photos from this year's school formals (Year 6, Year 10, Year 12) is growing on our Facebook page - thank you for sharing.  You are welcome to post yours to share with followers and visitors.

And do drop by to see them.

Thursday, 12 December 2013

New national arts funding

New funding for artists with disabilities
Gina Farley, Arts Hub, 3rd December 2013
Australia Council for the Arts has announced three new initiatives that will better integrate and help artists with disabilities.

To mark International Day of People with Disability, the Australia Council has committed $300,000 to support a new Artists with Disabilities Program.

CEO Tony Grybowski said the Program would enable artists with disabilities to produce, present and tour their work through new grants opportunities. Grybowski said, ‘Individuals and groups who identify as having a disability can apply for grants of up to $10,000 for development and up to $20,000 for arts projects.’

The pilot program will be launched in the first half of 2014, supported through the new Unfunded Excellence funding for 2013/14.
 ... read more

'The Mermaid and the Smoo'

The story of Josie, a sixteen year old Sydney student who has Down syndrome, who was not invited to her public high school's Year 10 formal, and her family's response, released on video, has spread widely online this week, stimulating a good deal of discussion.  You might have followed it from our Facebook page.

There has been some robust discussion about whose responsibility it was to ensure that all students were included, and why some were not.

The school has released a response, published by here, by Mamamia yesterday.

Creative radical activists, The Bolshy Divas, based in Western Australia, have produced The Mermaid and the Smoo'a little bolshy book about inclusion' prompted by the incident.

You can read it online, and/or download a.pdf version to print out and share. Links to Josie's story and the video her mother made are also provided.

You might think that this story is a story about special schools.
It is not. 
It is a story about inclusion, and how there are no choices for people with disability. Universal design means flooding our schools and public buildings with support, so that everyone can join in. Together we are better.
Who are the Bolshy Divas?
We're disability activists in the style of feminist masked avengers, exposing and discussing discrimination, unmet need and issues which affect people with disability and their families. 
Bolshy Divas use humour, art and passion to talk about the overlooked, the unfair and the subtext behind real issues which affect Australians with disability. 
There are no requirements to be a Bolshy Diva, just owning a desire to bring about change, a sense of humour and a tonne of 'bolshiness' - enough guts to talk about the issues openly and honestly. We could be anyone - we are everywhere. We rank amongst the almost four million people with disability, plus their families. We are strong. We are Bolshy Divas.

Wednesday, 11 December 2013

Madison Pedler, Vice-Captain, 2014

Last night, Madison Pedler was appointed vice- captain of her Sydney primary school  for 2014, after being voted in by the student body. She attends the local mainstream public school (with more than 550 students).

During the election process last month, along with all the other candidates, Madison delivered a speech to the other students - it was short and simple enough for her to read, and it was on a screen behind her just in case she needed the extra support. It's a wonderful example of inclusion working beautifully when all the right supports and attitudes are in place.

Congratulations Madison, and to your school.

DS Hunter Region Christmas Picnic

Newcastle was a very busy place to be last week. The Special Olympics first Asia Pacific Games were warmly welcomed by the city, where the athletes and their supporters were celebrated all week long.

Then 55 people from 16 families enjoyed the Down Syndrome Hunter region Christmas Picnic Day at the beautiful Foreshore Park on Newcastle's waterfront last weekend, in perfect weather. Those with Down syndrome attending ranged in age from 3 month to 22 years. People travelled from all over the Hunter - from as far away as Singleton, Taree, Kurri Kurri, Port Stephens - and even further afield from Coolah. They were so caught up with making connections and enjoying the day and the company that not too many photos were taken - a great sign for future events!

Georgie-Rose (11), Megan (11) and Abby (10)  enjoyed getting together at the picnic
Thanks to all involved in organising the event, and to those who came.

Tuesday, 10 December 2013

Tuesday Chatter: Down Syndrome NSW on Facebook today

Tuesday chatter today is all about education. 

Nelson Mandela said 
What is the most powerful piece of information you would share to educate the community about Down Syndrome.

Add your thoughts as a comment to today's Facebook status.

Tee Up for Down Syndrome: 26th February 2014

Monday, 9 December 2013

SO Asia Pacific Games - farewells

From the Champions Daily, 8th December 2013 (published by Special Olympics Australia):

Three of our bocce boys gathered together yesterday to share their
final goodbyes at the Athlete Village: (L-R) Jim Aarsse (QLD),
Clark Hampton (QLD) and Cameron Chance (NSW).
Photo: Sharon Nixon, Special Olympics Australia.
Congratulations to the athletes, and to Special Olympics Australia on staging and participating in the first ever ASia Pacific Games in Newcastle last week.  The closing ceremony was held on Saturday.  Team Australia took out more than 700 medals!

Our thanks to SO Australia for their permission to share their photos throughout the week - the communications team did a fabulous job of keeping us informed through the Champions Daily and hundreds of images posted in their Flickr group. You can see all of the galleries here.
If you have photos and stories from the Games that you would like to share here, please email

News and commentary on the NDIS (12)

ABC Hobart interview on the future of the NDIS
Mornings, ABC Radio Hobart, Wednesday, 27 November 2013
Transcript of Leon Compton's interview with Minister for Social Services, Kevin Andrews in Hobart.

NDIA Strategic Plan 2013 - 2016
The National Disability Insurance Agency (NDIA) Board has developed a draft 2013-16 Strategic Plan that outlines the vision, mission and goals for the NDIA to ensure we build and manage a world leading National Disability Insurance Scheme (NDIS) for all Australians. 
The Strategic Plan has been developed by the NDIA Board in close consultation with the NDIA’s management team and Independent Advisory Council. The Strategic Plan will be reviewed by the NDIA Board annually and will be aligned with the NDIA’s Corporate Plan and Statement of Intent.
It sets out the goals for the NDIS for the next three years. You may wish to review the Strategic Plan and leave your feedback.

National Disability and Carers Alliance Newsletter, 3rd December 2103
In this issue
Blog: Lessons from the launch
Case study: Getting to grips with the NDIS
Launch site Q&A with Disability Alliance Hunter
Launch site case study: Carer
Results: NDIS survey
Launch site case study: service provider
Minister gives NDIS "early report card"
Forum: Getting to Grips with the NDIS
Craig Wallace, Open Forum, 3rd December 2013
There still remain a lot of barriers in our urban landscape for people with a disability. Craig Wallace would like to see a national survey on community attitudes towards disability to give us solid evidence about what these attitudes are and what could leverage change ...
ABC News, 4th December 2013
Organisations involved in the roll-out of the Newcastle launch of the National Disability Insurance Scheme (NDIS) say getting the cost structure right is still the main challenge ...

Mal Brough appointed to chair NDIS committee
Sunshine Coast Daily, 4th December 2013
Prime Minister Tony Abbott has appointed Member for Fisher Mal Brough to Chair the Joint Standing Committee on the National Disability Insurance Scheme. Assistant Minister for Social Services Mitch Fifield said the committee will serve as a symbol of unity.

"(It will) also provide a forum where questions of design and implementation can be posed in a way that is not seen to be partisan'" he said ...

National Disability Scheme forum: Q & A
Ian Kirkwood, Newcastle Herald, 5th December 2013,
The state government has answered more than 50 questions about the shake-up of disability services in NSW after Wednesday’s forum in Newcastle ...

'Teething problems' emerge in NDIS rollout
ABC News, 5th December 2013
Early feedback on the rollout of the National Disability Insurance Scheme (NDIS) in the Barwon region is suggesting the scheme has teething problems. The Barwon region, which includes Geelong, the Surf Coast and Colac, is one of the first NDIS rollout sites.

A new program was launched yesterday, with funding from the Victorian Government, called 'LEAD Barwon'. It aims to train people using the NDIS to share their views on the rollout ...

Saturday, 7 December 2013

Weekend reading and viewing: 7th - 8th December 2013

Photo: Special Olympics Australia
Josie is a Champion!
Champions Daily, Special Olympics Australia, for the Asia Pacific Games 2013, 6th december 2013
Josie McLean from Collaroy began bowling at the age of 10 and is the first person in her family of five brothers and sisters to be selected to represent Australia. In addition to tenpin bowling, Josie is also loves hip-hop dancing, gymnastics and swimming. Josie won a bronze medal in her singles game and is looking forward to achieving more great results later this week. Her favourite moments at the Games has been attending the Opening Ceremony and competing in front of her family.
Is your child a runner?
Paul (Emily's Dad), Orange Juice Flavour Sky, 1st December 2013
... Emily was a runner. Now when I say she was a runner please don’t fall into the trap of thinking this is a good thing ... Cast from your mind any thought of Emily wearing a running vest with a Bupa London Marathon number on the front. This is not the kind of runner I mean. No, Emily was a runner – at any given time, without any notice she could shoot off in any direction like a wayward rocket on a windy fireworks night ...

Making Music Despite Disability
WKBW News, 4th December 2013
... Meet Sujeet Desai, an accomplished musician who has played all over the world, with some of the best musicians on the planet, compiling countless awards ...

Daily Life, 5th December 2013
Swiss disability advocacy organisation, Pro Infirmis, has released a video as part of a campaign for International Day of Persons with Disabilities. In the film we see mannequins re-shaped to mirror the bodies of Athlete Urs Kolly, who lost his lower right leg in an accident, ‘Miss Handicap 2010,’ Jasmine Rechsteiner, and blogger Nadja Schmid, who has ongenital spinal muscular atrophy, among other people.

Watching their reactions when the figures are unveiled is incredibly moving ...

Don't diss our Disability Day
Craig Wallace, Ramp Up, 2nd December 2013 (updated 3rd December)
Happy International Day of People with Disability! Craig Wallace says if an IDPwD event is not quite to your liking, there is still much to respect and celebrate ...

IDPwD: what's to celebrate?
Todd Winther Ramp Up 2nd December 2013
... This rather cynical 'differently abled person' fails to see the logic in such self congratulatory landmarks. Is it to commend the broader public for being tolerant of people with a disability? They are not. Is it to celebrate various people with a disability for coming together to achieve common goals? They are not common. Is it to celebrate the achievements of disability policy? They do not exist ...

Craig Wallace, Open Forum, 3rd December 2013
There still remain a lot of barriers in our urban landscape for people with a disability. Craig Wallace would like to see a national survey on community attitudes towards disability to give us solid evidence about what these attitudes are and what could leverage change ...

Let's give tireless passion a rest
Leah Hobson Ramp Up 4 Dec 2013
People often talk about their passion to work for causes involving people with disability. Generally speaking, passion can be an incredibly good thing. ... But passion can also be dangerously complicated ...

Friday, 6 December 2013

Australian and International messages and statements on International Day of People with Disability 2013

International Day of People with Disability was celebrated earlier this week, on 3rd December, but events always begin in the days leading up to, and continue well beyond 3rd. These are some of the formal statements and messages released for the occasion in 2013.

Message on the International Day for Persons with DisabilitiesStatement attributable to the President of the General Assembly of the United NationsUnited Nations, New York, 3 December 2013
Over 1 billion persons throughout our world are disabled. On this International Day, the global community has come together to promote awareness and mobilize support for the inclusion, at all levels, of all persons with disabilities. 
Disabled people make up the largest and most disadvantaged minority in the world --nearly 15 percent of the world's population. The majority of disabled persons across the globe are from developing countries. Many of them live in poverty, face discrimination, and are denied basic opportunities for growth. 
On September 23 2013, under my leadership, the United Nations General Assembly convened the historic first-ever High-level Meeting on Disability and Development, and adopted a landmark outcome document aimed at creating a fully disabled-inclusive society as a part of the Post-2015 Development Agenda. 
This year under the theme “Break Barriers, Open Doors: for an inclusive society and development for all,” the international community is calling for a global effort to make physical environments, transportation and information accessible to everyone and to change attitudes that fuel stigmatization and discrimination. What the global community needs now are tools for action and change, in order to realize an inclusive society where everyone’s rights are protected and equal opportunities are supported. 
I call on all Member States to move forward in this direction. The new landmark outcome document sets the vision beyond the Millennium Development Goals target date and underscores the need for disability-inclusive development strategies in the post-2015 setting. We must take aim at breaking down barriers and creating opportunities so that all human beings can live their lives to the fullest.
Down Syndrome Australia, 3rd December 2013
Down Syndrome Australia today celebrates International Day of People with Disability together with our friends and colleagues around the globe. International Day of People with Disability (IDPwD) is a United Nations sanctioned day that aims to promote understanding of disability and recognition of the dignity, rights and wellbeing of people with disability ...
International Day of People with a Disability turns 21
Senator the Hon Mitch Fifield, Assistant Minister for Social Services, 3rd December 2013
... This year is a significant milestone for International Day of People with Disability—marking 21 years of promoting an understanding of people with disability. 
International Day of People with Disability is a fantastic opportunity to acknowledge the contributions made by Australians with disability. It’s also a good time to reflect on the important achievements that have been made to improve economic and social participation for people with disability in Australia. 
Today serves as a reminder of what still needs to be done to ensure Australians with disability have access to opportunities to fully participate in social and economic life ...
Transcript and video of speech for International Day of People with Disability, at the Australian National Museum
Human Rights Commissioner, Graeme Innes, 4th December 2013
... As people with disability, we're not heroes and we're not victims. We're agents of our own destiny ...

The NSW Government released some significant policy documents on International Day of People with Disability:

NSW Reveals Latest Disability Services Policy
Pro Bono News Australia, 5th December 2013
The Ready Together policy will prepare NSW for the transition to the National Disability Insurance Scheme (NDIS) by July 2018 and “reaffirms” the State's $2 billion commitment to transition to an individual model of support, according to the NSW Government
The policy includes the NSW Government National Disability Insurance Scheme (NSW Enabling) Bill, which provides for the transfer of the employment and entitlements of public sector disability services employees in connection with the Federal Government’s NDIS to another public sector agency or to a non-government sector employer. 
Also part of the plan is the Disability Inclusion Bill, which will protect the rights of people with disability and promotes community inclusion ... read more here

Bike riding clinics: January, St George/Sutherland

David Chan, Acting Senior Physiotherapist, Department of Family and Community Services (Ageing, Disability and Homecare) has asked that we help circulate this invitation for kids and teens to attend a bike clinic in January.  Please contact David directly if you are interested:

Add caption
This January holidays I will be running a week-long learn to ride clinic for children to learn how to ride a standard two wheel bicycle.

The clinic is aimed at children from about 7 to 15 years old with either Down syndrome or autism, and preferably who live in the St George and Sutherland shires (although there can be some flexibility with this).

The clinic will provide tips and techniques to help develop the skills to be able to ride a bicycle, and an opportunity to practice with support.

The two weeks that the clinic will be on are: 
January 6th to 10th at Moorefield Girls High School, Kogarah
January 13th to 17th at Caringbah High School, Caringbah.
The clinics will last for one hour, and will be from either 9am-10am, or 10am-11am.

If you already have a bicycle, please bring it along. If you don’t have one, please contact me as I have several bikes that may be suitable to borrow for the week. However you must bring along a helmet for your child.

For more information or to sign up for a week of the clinic, please email me at or call me on 9566 5000
(email is easier as I am often out of the office). 

Feel free to pass this information on to anyone who might be interested.

Thursday, 5 December 2013

Library/ resources Thursday: 5th December 2013

  • The third occasional issue of Starecase - a no holds barred magazine for people with disability and by people with disability - is available to download on the ISSU platform here, or as a .pdf here.
  • The Down Syndrome Research Fundation, based in Vancouver has listed its most highly recommended apps for individuals with Down syndrome, in its DSRF store - proceeds from sales generated through these links will support DSRF
  • US inclusion specialist Paula Kluth is currently offering '12 days of inclusion' - a tip a day for twelve days, on differentiating the curriculum. Something to file away for the new school year for those of us in Australia.

All issues of Service, Support and Success can be downloaded from the Vita Community Services website here, and/or you can take out a free subscription.

Images from the SO Asia Pacific Games

  • A nice gallery of 8 photos from ten pin bowling at the Special Olympics Asia Pacific Games yesterday, published by the Maitland Mercury.  Some great studies in concentration and delight. (The names seem to be a little out of kilter, the person in Image no. 6 looks more like 'our' Josie McLean than no.7 ).

Rest Day for Team Australia.  
Image courtesy of Special Olympics Australia

A very successful day in the pool for Australia today!
Congratulations all, including Lucy Dumitrescu (top left) and Brendan Foley (bottom right).
Image courtesy of Special Olympics Australia

Wednesday, 4 December 2013

Intellectual Disability and Dementia: workshop for professionals

Alzheimer’s Australia is holding a free one-day workshop for professional staff  who work with people with an Intellectual Disability and Dementia within community, health and allied health services.

The workshop will cover:

  • The major causes, signs and symptoms of dementia, and how these present in someone who has an intellectual disability
  • Barriers to diagnosis and practices that assist in overcoming these barriers
  • The impact of dementia on communication and strategies that support independence and engagement
  • An understanding of the behaviour changes associated with dementia and ways to work with these changes and support the person
Tuesday 10 December, 2013
Eloura Blue Mountains Disability Service, Springwood
More information: 8875 4665

Down Syndrome Hunter Region

For further information, contact Candy Connors 
Liaison and Support - Down Syndrome Hunter Region
Phone 0459 839 599;  Email 

Tuesday, 3 December 2013

Waltz-Sing Matildas at the SO Asia Pcific Games

Jessica Barker and Henry Hely are proud members of the Hunter music
and dance group, the Waltz-Sing Matildas, who won many hearts with their
three dance numbers during the Opening Ceremony of the
Special Olympics Asia Pacific Games on Sunday night in Newcastle.
Jessica also had a prominent solo spot that she executed brilliantly.

Thanks to Henry's mum, and DS Hunter Region for the photo
Michael Wheatley is also a member of the Waltz-Sing Matildas.
He lead the dance performances of the Opening Ceremony, with a solo 

as a lone surfer, calling his friends to the beach 
... and he exited the stadium in fine style with a circuit in an open-top Kombi! 
You were fabulous, Michael.
Thanks to Michael's mum, and DS Hunter Region for the photo 

Good health: supporting people with intellectual disabiliity and diabetes

The incidence of diabetes is somewhat increased amongst people with Down syndrome, so the November 2013 issue of Service, Support, Success will be of interest to those supporting people with Down syndrome, either now, or to file away for possible future use.

All issues of Service, Support and Success can be downloaded from the Vita Community Services website here, and/or you can take out a free subscription.

Monday, 2 December 2013

The SO Asia Pacific Games begin!

Here is a gallery of 95 photos and a video report from the Newcastle Herald, of the opening ceremony of  the Special Olympics Asia Pacific games in Newcastle last night - it was spectacular!

If you were there and have photos you would like to share here, you are welcome to send them to, along with photos from the Games throughout the week.

Good luck to all the athletes - have a wonderful week after that great start.