Address details

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

Monday, 24 December 2012

Saturday, 22 December 2012

Weekend reading 22nd - 23rd December

Where great art transcends disability, Amelia Rachel Hokule’a Borofsk, The Atlantic, 13th December 2012. A new article on Judith Scott, the artist whose work is the subject of Metamorphosis, featured in last week's Library Thursday post, and the studio in which she worked.

Creative arts help break down barriers for people with disability, Robyn Archer, International Day for People with a Disability Australia and FAHCSIA, 3rd December 2012

Is there reason to be averse to Down syndrome? Amy Julia Becker, Thin Places, 14th December 2012

School gadgets boost student communication, Kathleen Dyett, ABC News (online), 17th December 2012

My son the vice president, Valle Dwight, Great Schools, 24th September 2012

6 Toys and Play Products To Help Develop Gross Motor Skills, Ahren Hoffman, Friendship Circle (blog), 26th November 2012

10 toys and household items to help develop fine motor skills, Ahren Hoffman, Friendship Circle (blog), 20th December 2012

Baby benches: how sitting helps a child walk and DIY benches! Jennifer Bekin, let's talk - Down syndrome, 20th December 2012

New generation to support Down syndrome research, University of Queensland News, 7th December 2012

Is our Disability Discrimination Act a bit of a dud? Craig Wallace, Ramp Up, 21st December 2012

Pension reform key to NDIS success, Andrew Baker, Australian Financial Review, 20th December 2012

Emerging Leader's Awards,National Disability Awards 2012, International Day of People with Disability Australia, 28th November 2012.  Video of the presentation of the award to Gerard O'Dwyer, and footage supporting his nomination.

Challenging Perceptions, Callan Lawrence, The Parramatta Holroyd Sun, 1st December 2012.  Local news article about Gerard O'Dwyer's award (see above), his work, and a terrific photo.

Executive function, Bill Nason, Autism Discussion Page Series of posts on 'executive functioning' skills, starting on Monday 17th December 2012 - much of this information applies to any people with Down syndrome too.

PWDA survey on the NDIS legislation

People with Disability Australia is seeking input to support its lobbying efforts on the National Disability Insurance Scheme legislation, via an online survey:

The legislation for the National Disability Insurance Scheme (NDIS) has been published and we want your views!!

(The survey consists of) 10 quick questions about some of the main issues in the legislation. In January PWDA will write to government and tell them what we think about the legislation. Your feedback will help us to explain to government the ways that the NDIS law can be improved.

The online survey closes at midnight on 16 January 2013. 

Friday, 21 December 2012

Special Disability Trust: private survey

A private survey on Special Disability Trusts is being conducted by the parent of a child with an intellectual disability. The results of this survey will be used to advocate for improvements to the Special Disability Trust.

The survey is available online here only until 23rd December 2012.

Making an Impact - Special Olympics Northern Beaches

Making an Impact is an 8 page spread celebrating the 21st anniversary of the Northern Beaches Region of Special Olympics NSW, published by Manly Daily,  yesterday (20th December 2012).

Many people with Down syndrome are featured in articles and the many wonderful photos, including articles about Allie Gillis who represented NSW at the National Junior Games in Newcastle earlier this month, Gabrielle Clarke who is both an athlete and mentor to others.

Rex Langthorne and Lorraine Clarke, both long-term volunteers and administrators are pictured - Lorraine is also a past-president of Down Syndrome NSW.

2nd Australian National Down Syndrome Swimming Championship: September 2013

The 2nd National Down Syndrome Swimming Championships will be held in NSW in  2013.
Knox Grammar School Aquatic Centre, Wahroonga (Sydney)
September 28 and 29, 2013
For further Information please email the Secretary, Down Syndrome Swimming NSW inc, Sarah Harvey, or visit: the website of the  Down Syndrome Down Under Swimming Organisation.

Thursday, 20 December 2012

Library Thursday: When Down syndrome and autism intersect

A much anticipated book will be released this week by US publisher Woodbine House:

When Down syndrome and autism intersect - a guide for parents and professionals, edited by Margaret Froehlke and Robin Zaborek, Woodbine House, 2012:

When Down Syndrome and Autism Intersect offers a thorough examination of the unique profile of a Down Syndrome-Autism Spectrum Disorder (DS-ASD) diagnosis and best practices for screening, treatment, and caretaking through the lifespan. This one-stop resource, the first of its kind, will greatly benefit families whose child is already diagnosed, and also those who suspect something more than Down syndrome. Professionals, too, will find information on how to distinguish DS-ASD from a diagnosis of just Down syndrome, and guidance on providing services for children and adults. (extract from the publisher's notes)

A copy is on order for the Down Syndrome NSW library, and will be available for loan to members in the new year.

Online orders to Australian addresses are not accepted directly by Woodbine House, but their books are readily available to Australian buyers. We recommend that you compare prices and availability at Silvereye Educational Publications, The Book Depository,, or Fox Educational Resources.

Pictello (app) discounted until 1st January 2013

Good news from AssistiveWare, the publishers of communication apps Proloquo2Go and Pictello:

Pictello is discounted by 30% until 1st January 2013, and until 13th January, they are running and interactive story contest: details here.

Pictello can be used for making stories (including personalised stories for individual users), step-by-step instructions ... wherever pictures or pictures and text will support communication. You'll get lots of ideas from the competition entries, so keep an eye on the website.

Online newsletters: current editions

Down Syndrome News, Vol 35 #7, December 2012, (US) National Down Syndrome Congress
In this issue:

  • Letting Go
  • Chronic Pain Management
  • Nine stories by and about individual people with Down syndrome, in the DS Headline News section
The print edition is available in the Down Syndrome NSW library.

Communique, December 2012, Family Advocacy NSW

E-Bulletin # 80, December 2012, People with Disability Australia

Newsletter 2012, Edition 5, December 2012, Accessible Arts NSW

Previous post on School-Link, December 2012, School Link Project, Children's Hospital Westmead.

Wednesday, 19 December 2012

Wordless Wednesday

VOTE FOR KAREN GAFFNEY - World Open Water Swimming Association Woman of the Year 2012 - deadline 31 December 2012

From Down Syndrome International:

Self-advocate and Down Syndrome International Ambassador Karen Gaffney, has been nominated, along with 14 other nominees, for the World Open Water Swimming Association (WOWSA) Woman of the Year 2012. This annual international award honours the woman who 

(1) best embodies the spirit of open water swimming 
(2) possesses the sense of adventure, tenacity and perseverance that open water swimmers are known for, and
(3) has most positively influenced the world of open water swimming during the year.

Karen's nomination from WOWSA reads: 

"Karen Gaffney is a champion in every sense of the word: a humble heroine, a remarkable role model, a spectacular speaker. The English Channel relay swimmer has dedicated herself and the tools at her disposal to champion a journey to full inclusion in families, schools, communities and the workplace for people with Down syndrome or other developmental disabilities. With dramatic open water swims to emphasize one’s potential, as well as her speeches, video tapes and resource materials, she constantly installs hope for others with Down syndrome. Her lifestyle proves a full productive and inclusive life is in store for parents and families of a child born with Down syndrome or other learning disabilities. For her swims across Lake Champlain, Lake Tahoe, in Hawaii and in San Francisco Bay, for her ability to heighten awareness and raise expectations of students, counselors, educators and those in the medical profession of the capabilities of children with Down syndrome to learn, grow and contribute in an inclusive setting, Karen Gaffey is a worthy nominee for the 2012 WOWSA Open Water Swimming Woman of the Year.”

Karen Gaffney is not just an incredible athlete and role model, but she also dedicates her life to improving quality of life and rights for people with Down syndrome worldwide. Therefore, Down Syndrome International would like to appeal to the global community to support her nomination for this prestigious WOWSA award. You can vote for her by following these simple steps:

1. Go to the award's website
2. Scroll down to "2012 WOWSA Woman of the Year Nominees" (see 10. Karen Gaffney) (you only need to vote in one category)
3. Click on the tick button to the left of the WOWSA logo
4. Find "Karen Gaffney" on the next page, click on the round box next to her name, then scroll down and click on the "Vote" button.

With your help, Karen can receive international recognition for her life long efforts which is so deserved, and much will be done to raise the profile of people with Down syndrome worldwide! Please vote before the deadline on 31 December 2012 and pass this on to your friends, family and colleagues.

To learn more about Karen Gaffney and the work she does, check out the Karen Gaffney Foundation website.

Down Syndrome NSW members can borrow the video Crossing Tahoe: A Swimmer’s Dream, about Karen Gaffney's long distance swim across Lake Tahoe, from the Down Syndrome NSW library.

Eleebana champion takes out first gold of Olympics

Jade Ginnane, Newcastle Star 
10th December 2012

Click here to see the photo and read
the story on The Star's website
This local news report about Megan Nay winning the first gold medal of the recent Special Olympics Junior National Games includes a beautiful photo of Megan with volunteer Leah Farrell.

Tuesday, 18 December 2012

Dr Billy ... a wonderful legacy

Billy Schulz, who died in September at the age of 56, has been much mourned. At the time, his family wrote that he was known as an 'ambassador of goodness', and now his legacy has been recognised with a great honour that he would have been thrilled to share with his mother, Dr Jane Schulz.  You just might need a tissue as you read this post from Grown Man Now, Sunday 16th September 2012, beginning ...

Western Carolina University has conferred on William Robert Schulz the degree of Honorary Doctor of Humane Letters.

William Robert Schulz and Dr. Jane Bolton Schulz received honorary degrees as Honorary Doctor of Humane Letters during the Fall 2012 Commencement Ceremony at Western Carolina University, Cullowhee, NC, on Saturday, December 15, 2012. Billy’s Doctorate was awarded posthumously ...
read on here for the Honoris Causa, read by Chancellor David O. Belcher, and the speech given by Dr. Jane Schulz

Billy Schulz, and his mother Jane,
in 2010
Jane and Billy's book, Grown Man Now can be borrowed from the Down Syndrome NSW library, by members.

Monday, 17 December 2012

Employment and people with disabilities: discussion paper and consultation

The Australian Minister for Employment and Workplace Relations, Bill Shorten, has released a discussion paper, Improving Employment Participation of People with Disability.

The Government would like to hear from all interested parties, including:
  • people with disability, their families, carers and community representatives
  • employers and employer representatives
  • current Employment Service Providers
  • state and local governments
  • unions and other employee representative groups
Submissions will close at 5pm (EST) 15 February 2013

You can download a copy of the discussion paper, and find out more information on how to make a submission by following this link.

School-Link December 2012 issue now online

The December 2012 edition of The Children’s Hospital at Westmead’s School-Link newsletter on mental health and intellectual disability in children and adolescents is now available online and/or as a .pdf download.  

Highlights include:

· Moving to Learn, Learning to Move: The importance of Motor Development in Mental Health and Intellectual Disability by Associate Professor Dr David Dossetor

· Interview with Professor Eric Emerson

· The Medicine Cabinet: Mood Stabilisers by Judy Longworth

· Report on the School-Link Group Stepping Stones Triple P Pilot with ADHC and Special Education Schools.

· Ruth Still’s reflections upon retirement

· Conference reviews, upcoming training and much more.

Readers are invited to complete the CHW School-Link Annual Check-Up end of year survey.  There are only 9 quick (mostly check-list) questions for you to complete. It will give the CHW School-Link an idea for improvements to the newsletter and ideas for training in 2013.

Saturday, 15 December 2012

Weekend reading and viewing 15th - 16th December

Down Syndrome: Today, more then ever, you need our kids, Sheyla Hirshon, All Born In, 6th December 2012
Living Life My Way 2 - Nathan Basha, posted 11th December 2012

186 miles of tears, Margaret (Gary) Bender, The Ordinary Life of an Extraordinary Girl, 11th December 2012

I am Peter, I am an artist and a writer, Tony Bryant, ABC Open Sunshine Coast, 26th November 2012

24 great toys for kids who don;t play with toys, Karen Wang, Friendship Circle, 13th December 2012

Down's syndrome support, Elite magazine (UK), Issue 7 (January 2013) Three family stories.

NDIS in the Hunter: Getting In Control, papers from the information day 24th November 2012

How grudging taxpayers can be responsible citizens, John Hirst, Sydney Morning Herald, 11th December 2012.  On funding the NDIS.

Special Olympics National Junior Games, Newcastle, 6th - 11th December 2012:

Friday, 14 December 2012

Spectronics iPad workshops for educators in 2013

Spectronics has announced a series of workshops for 2013,
to be held in locations across Australasia
March 2013:  Brisbane, Cairns, Sydney, Melbourne 

April 2013: Hobart, Adelaide, Perth, Auckland

Resourcing Families events scheduled for 2013

Resourcing Families provides information and ideas for families, friends and allies of people with disability about having a vision for the future, building informal supports, establishing networks and developing, implementing and sustaining individualised and self managed supports, across NSW.

Resourcing Families  events for the first half of 2013 are now listed on its website.  Details of both face-to-face events and webinars are listed here, with links to individual event flyers:

Creating Community Connections 
6 March 2013

More Choice and Control
Ryde, 21 March 2013

The role of paid support: how to enrich someone’s life
Newcastle, 11 April 2013

Circles of Supporting - Getting started
8 May 2013

A new section has been added to the Resourcing Families website that includes tools for a self managed/self directed approach - resources for gathering personal information, planning frameworks, employing people to provide support (including examples of advertisements that others have used to find paid staff) and supported living.

To receive the new Resourcing Families e-news bulletin, contact

Thursday, 13 December 2012

Library Thursday: A Backward Glance

A Backward Glance is the opportunity to take a look at resources in the Down Syndrome NSW library that are in the really worthwhile reads but not new titles.

Metamorphosis: The Fiber Art of Judith Scott
by John McGregor

A beautiful monograph on the work of fibre artist Judith Scott, who began creating extraordinary textile art in her 40s at the Creative Growth Art Center in the USA. The book is illustrated with high quality colour photos of Judith’s work and includes biographical information and interpretation of her work. Great reading for those interested in the creative self-expression of people with DS.

Image from:

Sprung! Alstonville, 2013

Wednesday, 12 December 2012

My Community Matters: submit a 90 sec video

My Community Matters is an SBS project about celebrating the diversity of Australian communities and stories that contribute to an inclusive society.

We are providing Australians with the chance to share their story with the Prime Minister in person on Australia Day 2013, as well as have their story published on the SBS website. All you need to do is submit your 90 second video.

Create a 90 second video story about why your community matters to you, highlighting the forms of belonging and participation in Australia. We are looking for submissions that share the diversity of today’s Australia: stories about all aspects of community – from your neighbourhood, local school, sporting club, cultural group or community organisation. 

The winner will receive ...
  • The opportunity to share their story in person with Prime Minister Julia Gillard on Australia Day
  • Publication of their story on the SBS website
Submissions to My Community Matters are now open and close on Friday 4th January 2013.

Go get creative, grab your phone or camera and start your video!

Scrapheap Adventure Ride 2013: registrations open

The destination for the next Scrapheap Adventure Ride has been announced so it's time to start planning your 2013 adventure.

On March 29 - 30, 2013 Riders will converge on Comeroo Camel Station 
150km north west of Bourke!

The Scrapheap Adventure Ride is all about raising money for Down Syndrome NSW. Riders will attempt to get their machines from their sheds to the destination and raise money through sponsorship. All funds raised go to Down Syndrome NSW. The 2011 Scrapheap Adventure raised over $66,000, the 2012 Ride raised $70,000 and we are looking to make 2013 bigger and better.

Registration and sponsorship is now open at the Scrapheap Adventure Ride 2013 website.

Tuesday, 11 December 2012

Stella Young: influential woman of 2012

Stella Young has been named among the  Sydney Morning Herald's 20 most influential women of 2012:

Through the honesty and humour in her writing, Stella Young has made a significant contribution to the public discourse on disability this year. As well as being the editor of ABC’s Ramp Up, Young is also a successful comedian, activist and a regular contributor to websites including The Punch and The Drum. This year, Young has worked tirelessly to put the National Disability Insurance Scheme back on the national political agenda. She has also tackled gender issues faced by disabled women including reproductive rights and disabled sexuality from an unapologetic feminist perspective.

...From more than 2000 nominations we selected the 20 women we felt most strongly were “a woman that empowers other women”.  This list is a timely reminder of just some of the inspiring and powerful women we have in our corner. They have all made an impact on the lives of Australian women this year and the issues that are most important to them. 

National Disability Insurance Scheme Bill 2012: call for submissions

The Senate seeks submissions regarding the National Disability Insurance Scheme Bill 2012 - another chance to have a say about the legislation.

Hamiltonstone Creative Commons Attribution-Share Alike 3.0 Unported license.

Information about the Senate Committee Inquiry:

On 28 November 2012 the Australian Senate referred the National Disability Insurance Scheme Bill 2012 for inquiry and report.

Submissions should be received by 25 January 2013. The reporting date is 13 March 2013.

The Committee is seeking written submissions from interested individuals and organisations preferably in electronic form submitted online or sent by email to

Notes to help you prepare your submission are available from this website. Alternatively, the Committee Secretariat will be able to help you with your inquiries and can be contacted on telephone 02 6277 3515 or fax 02 6277 5829 or by email to

Dreamnight at the Zoo photos

See our photos from Dreamnight at the Zoo at Taronga Park Zoo, Sydney last week, on our Facebook page.

Our thanks to Taronga Park Zoo and the sponsors.

Monday, 10 December 2012

For your 2013 diary ...

Advance notice:

Having a Say Conference 
for adults with intellectual disability, Geelong
6th - 8th February
presented by VALID

Unlocking Potential
a conference for teachers and education professionals, Brisbane
14th March 2013 
presented by the Down Syndrome Association of Queensland

NSW Carers Conference
14th - 15th March 2013

Macarthur Magic - Special Needs Football Club
Providing kids with special needs in the Macarthur region the chance to play soccer.

Our vision is to provide kids with special needs the opportunity to play soccer, joining in to the fullest of their abilities in the spirit of inclusion, tolorance and fair play.

We are currently working with the Macarthur Soccer Association to establish this club, and be ready for the 2013 season. 

SO Junior National Games: photo gallery

The Newcastle Herald has published a gallery of 20 photos by Peter Muhlbock from the Junior National Games. It includes a wonderful photo of athletes Sam Stubbs and Jordan Cabrita from the NSW cricket team (at no. 17) ... with their gold medals! Congratulations!

Pictures from the closing ceremony are promised soon on the Special Olympics Junior national Games Facebook page.

Sunday, 9 December 2012

More medals for Megan, and for Karley

From Candy Connors, Liaison and Support, Down Syndrome NSW (Hunter):

 It was a very successful day in the pool yesterday (Saturday 8th) for two of our local competitors!

Megan Nay, aged 10 yrs, won gold in 50m freestyle and  in 25m backstroke (see previous post).

Karley Moran, aged 15 yrs, won silver in the 25m freestyle.

And both girls won bronze in the 50m freestyle relay.


Congratulations to both Karley and Megan, and to their very proud parents who have obviously put a lot of time, energy, and emotion into supporting their girls.

Karley Moran with her mum, Kim

Karley with her proud siblings, Sarah and Nick

Special Olympics Junior National Games: first medal won by Megan Nay

Megan Nay (NSW) (from Newcastle) celebrated the very first medal of the 
2012 Special Olympics Junior National Games with Willie Mason 
from the Newcastle Knights. She won gold in the 25 m back stroke event.

Congratulations Megan, and the NSW team!

Photo: courtesy Special Olympics Australia

Saturday, 8 December 2012

Weekend reading and viewing 8th - 9th December

Walk? Dance? Dance-Walk? Joan Medlen, Practical Wisdom, 1st December 2012

Enabling and Protecting Issues Paper, Children with Disabilities Australia, on abuse of children with disabilities

The Girl with the freckles, Conny Wenk, Blurb, 2010.  Book of photographs by a German photographer, available to view online or purchase in print.

Siblings and School, Kate Stohm, Siblings Australia, 4th December 2012

Meet Maya, American Girl (magazine), November/December 2012

Advocacy in the community, Janet (self-advocate), Voices at the Table (VATTA) blog (Canadian Down SYndrome Society), 5th December 2012

(US) Senate Rejects UN Disability Treaty, Michelle Diament, Disability Scoop, 4th December 2012. news report on the failure of the US to ratify the UN's Convention on the Rights of Persons with Disabilities.

Special Olympics Junior National Games, Newcastle, Today Show, Nine MSN video, 7th December 2012

Video message from the National Disability Awards Patron Aaron Pederson who was unable to attend the Award ceremony in Canberra last week:

Friday, 7 December 2012

Bi-partisan support for NDIS reported after Federal-NSW agreement on funding

Further news on the funding and full implementation of a National Disability Insurance Scheme, includes a commitment from the current Federal Opposition to honour yesterday's agreement:

The Council of Australian Governments meets in Canberra today, with the NDIS on the agenda.

COAG Communique – 7 December 2012 (Every Australian Counts)
Our political leaders all met in Canberra today for the 34th COAG meeting. Top of the list of agenda items was the NDIS, after NSW yesterday became the first state to agree to a funding arrangement with the Commonwealth.

Unfortunately, the other states did not today follow suit.

However, NSW, Victoria, South Australia, Tasmania and the ACT all signed bilateral agreements with the Commonwealth that confirm the operational and funding details for the roll-out of the NDIS in each launch site. This is a good step forward.

You can read the full COAG December Communique to see what our political leaders had to say.

Roger Reeves receives Sisley-Lejeune award for translational research in intellectual disabilities

Johns Hopkins Medicine - Institute for Basic Biomedical Sciences
News and events - Vanessa McMains

The Fondation Jérôme Lejeune has awarded Roger Reeves a 2012 Sisley-Jérôme Lejeune International Award for Translational Research in Intellectual Disabilities.  Prof Reeves is a professor of physiology and member of the McKusick-Nathans Institute of Genetic Medicine, at Johns Hopkins University in Baltimore. He received the award, which included a 20,000€ cash prize, at a ceremony on 22nd November, in Paris.

Reeves studies Down syndrome, which occurs when someone inherits three copies of chromosome 21 instead of two copies. Using a mouse model of the disease, he and his colleagues treated mice with drugs that corrected developmental problems in the parts of the brain important for learning and memory, like the hippocampus and the cerebellum. One of these drugs is currently in clinical trials for the purpose of improving cognition and direction sensing in people with Down syndrome.

In honor of his award, the Department of Physiology sponsored a special lecture given by Reeves entitled From Mice to Mind: Translational Science in Down Syndrome, held at Johns Hopkins University on 5th December.

Related Stories: 
Roger Reeves on developing treatments for Down syndrome
Roger Reeves: Tackling Down Syndrome For A Quarter Century

Thursday, 6 December 2012

Feds, NSW strike deal on disability scheme

ABC News

6th December 2012 1.00 pm

New South Wales has become the first state to strike a deal with the Federal Government on funding the National Disability Insurance Scheme (NDIS).
Prime Minister Julia Gillard and NSW Premier Barry O'Farrell made the announcement at a joint press conference this lunchtime, on the eve of Friday's COAG meeting.
They said the Commonwealth had agreed to cover 51.4 per cent of the cost of trialling the scheme in the Hunter Valley.
The Government introduced the NDIS legislation into Parliament last week, setting out the structure and eligibility criteria for the scheme.
New South Wales, Victoria, Tasmania, South Australia and the ACT have all previously agreed to host launch sites for the NDIS, but NSW is the first to finalise the details.
Queensland previously said it did not have the money to fund a trial site, and instead announced its own version of a disability funding scheme.
Ms Gillard praised Mr O'Farrell for becoming the first state premier to sign up to the scheme.
"What today shows is you can get it done. We have just done it," she said.
More to come.

New online information sessions for parents of very young children with Down syndrome

 Two new online recordings are now available from the excellent Speaker Series offered by Boston Children's Hospital Down Syndrome Program:

November 6, 2012 - Dr. Emily Davidson, Angela Lombardo and Sarah Cullen presented
Your Baby's First Year: What You Should Know!

December 4, 2012 - Dr. Nicole Baumer presented
Infantile Spasms and Seizures in Children with DS

It is highly recommended that parents of babies with Down syndrome have some information about Infantile Spasms - not to worry you, but to alert you to the higher than usual incidence of this still rare but significant condition that can be difficult to diagnose accurately. We hope you never actually need it, of course.

'Person Centred Approach' - Making it work for People with Disability who are Ageing: conference papers

Copies of the presentations from a forum hosted by the Futures Alliance in Sydney last month, are now available to download, addressing

  • What Person Centred Policy means in NSW 
  • Person Centred Approaches for People with Lifelong Disability:An Examination of the issues 
  • Aged Care Reform Developments 
  • National Disability Insurance Scheme 
  • Building a Culture of Person Centredness 
  • Consumer Directed Care - An Update
Download from the Futures Alliance blog, here.

Wednesday, 5 December 2012

Wordless Wednesday

After School - what then? February and March 2013 workshops

This Family Advocacy NSW workshop is about preparation and planning for when a student with disability, who will need ongoing support, leaves school.

It is suitable for families of students who are approaching the end of high school.

Click here to view the flier with registration details for events across NSW in 
February and March 2013

February: Albury, Deniliquin, Parkes, Ryde, Bankstown, Lismore
March: Bateman's Bay, Wollongong, Campbelltown, Penrith, Taree, Maitland, Gosford

Our members who have attended After school - what then workshops with Family Advocacy recommend them to other families.

Tuesday, 4 December 2012

Hunter athletes head to games

Jade Ginnane, 3rd December, 2012:

The wait is finally over for 26 dedicated and talented Hunter athletes.

In less than 24 hours, selected Hunter athletes who are representing the state will be officially welcomed to the 2012 Special Olympics Junior National Games.

The Junior National Games will run from December 6 to 10 and are an opportunity for children with an intellectual disability to compete at a professional level.

The athletes will compete in both individual and skills-based team sports that range from swimming, basketball, cricket and athletics to soccer, tennis, T-ball and gymnastics ... read the full article in The Newcastle Star

DREAM BIG Dancers: coming to the Illawarra in 2013

DREAM BIG Dancers is a dance school for children, teens and adults with disabilities.

Students will have the opportunity to:
  • participate in structured dance lessons
  • learn and practice dance routines
  • work towards performances at local community events
  • build self esteem
  • develop social skills
  • network with others 
  • partake in physical activity

Lessons will be 1 hour sessions every Thursday afternoon of the school term, in the Wollongong area. (Exact location to be announced)

Classes will include Jazz, Hip-Hop and Lyrical dancing.
Cost: $10 per lesson

“because everyone can dance, no matter what your (dis)ABILITY!”

For further information or enquiries, contact Jacinta Pinkster on:
Ph: 0402 690 853

A bit about the teacher, Jacinta Pinkster ...

Bachelor of Arts: Media and Cultural Studies (2009); Graduate Diploma in Primary Education (2010); Masters of Inclusive Education (2013)

Jacinta is a NSW accredited Teacher in Special Education at NSW Public schools. Jacinta began dancing at the age of 4 and has over 20 years experience in dance teaching and performing. Her ballet training began at the age of 4 and she has successfully completed RAD Graded and Major examinations. Over the years Jacinta has studied all styles of dance including jazz, hip hop, contemporary, national character, modern and tap. 

Recently, Jacinta has choreographed performances for 2 IO/IS classes within mainstream NSW Public schools. These students performed at Wollongong eisteddfod, school assemblies and disability dance workshops.  The amount of positive feedback she received from these performances has been the inspiration for extending her skills to the broader community. 

Monday, 3 December 2012

On International Day for People with Disability ...

End the cycle  This video explains the cycle of poverty and disability and shows ways to end the cycle. Featuring Sam Cawthorn, Stella Young, Paralympians Liesl Tesch, Dylan Alcott and Grant "Scooter Patterson", Australia's Disability Discrimination Commissioner Graeme Innes, Dale Sheppard, Elena Down and Stevie Wills.

National Disability Strategy within NSW - On December 3 2012 the Minister for Disability Services, Andrew Constance launched the National Disability Strategy NSW implementation plan 2012–2014 ... read more here

OPINION: Removing barriers will reduce disability,  Cec Shevels, Newcastle Herald, Dec. 3, 2012

Don't feel sorry for me ... music video released today by Steve Passfield and Studio ARTES

Blue Mountains Gazette
28th November 2012

Freya is also a passionate photographer
 - this is a  recent self-portrait

Practical Design Fund - Today, the 73 successful projects under the $10 million Practical Design Fund, that will help people get ready ahead of the launch of an NDIS, were announced.

The Practical Design Fund identifies practical solutions and innovative approaches to assist people with disability, their families and carers and the disability sector get ready for an NDIS. The Practical Design Fund will also help providers and suppliers of equipment make the transition to an NDIS and help improve access in remote and regional communities.

Go to the NDIS website for details of projects that have been funded.

In a league of my own, Brenton Ashford-Potter, Don't DIS My ABILITY blog, 3rd December 2012 There’s no competition when it comes to Brenton Ashford-Potter’s passion for sport.

IDPwD: UN Secretary-General's message

This year’s Paralympic Games were a reminder of the immense potential of persons with disabilities to soar and to inspire. One girl wrote to a Paralympic gold-medal champion, “Watching as you overcome the difficulties of life, reaching for new victories and new heights in sports, I derive strength and inspiration.”

Persons with disabilities have a significant positive impact on society, and their contributions can be even greater if we remove barriers to their participation. With more than one billion persons with disabilities in our world today, this is more important than ever.

My United Nations Messenger of Peace focusing on this issue, the legendary superstar Stevie Wonder, embodies the spirit of service to others. After playing a spectacular UN Day concert at our Headquarters this year, he said, “I haven’t even touched one iota of what I want to do for and through the United Nations to help heal this world.”

Our challenge is to provide all people with the equality of access they need and deserve. Ultimately, this will create a better world for all. As negotiators at this year’s “Rio+20” United Nations Conference on Sustainable Development agreed, accessibility is critical to achieve the future we want.

Together, we must strive to achieve the goals of the United Nations Convention on the Rights of Persons with Disabilities: to eliminate discrimination and exclusion, and to create societies that value diversity and inclusion.

In order to spur action to bridge the gap between well-meaning commitments and long-overdue actions, the United Nations General Assembly will hold a High-Level meeting on disability and development next year. This gathering will take place as the international community works to forge a post-2015 development agenda, presenting an opportunity to ensure that the rights, concerns and contributions of persons with disabilities are fully taken into account.

This International Day of Persons with Disabilities marks the official opening of preparations for the High-level Meeting. Let us make the most of our commemoration by working to ensure that persons with disabilities enjoy their rights and realize their great potential.

Source: UN enable

Sam spins to Special Olympics

Many kids with Down syndrome will be amongst those heading to Newcastle to compete in the Special Olympics Junior National Games this week, like Sam Stubbs.  Good luck, play well, and have the time of your lives!

Sam spins to Special Olympics
Damian McGill, South Coast Register
30th November 2012

Bay and Basin’s junior cricket sensation, Sam Stubbs, is preparing to bowl for the NSW Special Olympic’s cricket team at the upcoming Junior National Games.

The Junior National Games is an initiative of Special Olympics Australia and gives the likes of Sam the spinner the chance to play sport at an elite level.The promising leg spinner will join his NSW team-mates at the tournament in Newcastle from December 6 to 10.

Sam plays for the Bay and Basin Cricket Club’s under 14s side and is renowned for his bowling skills ... read more

Research:Prenatal intervention reduces learning deficit in mice

(US) National Institutes of Health News
30th November, 2012

NIH study shows improvements in animals with Down syndrome characteristics

Mice with a condition that serves as a laboratory model for Down syndrome perform better on memory and learning tasks as adults if they were treated before birth with neuroprotective peptides, according to researchers at the National Institutes of Health.

Down syndrome results when an individual receives an extra copy of chromosome 21.  According to the Centers for Disease Control and Prevention, Down syndrome occurs in 1 of every 691 births.  Features of Down syndrome include delays in mental and physical development and poor muscle tone.  These features may vary greatly, ranging from mild to severe.

The researchers studied growth factors that are important at certain key stages of brain development in the womb.  Named for the first three amino acids making up their chemical sequence, NAP and SAL, are small peptides (small protein sub units) of two proteins.  These two proteins enhance the ability of brain cells to receive and transmit signals, and enable them to survive.  (NAP is an abbreviation for NAPVSIPQ and SALfor SALLRSIPA.)

The mice in the study had an extra copy of mouse chromosome 16, which has mouse counterparts to 55 percent of the genes on human chromosome 21.The researchers treated pregnant mice with NAP and SAL for five days, then tested the mouse offspring at 8 to 12 months of age, comparing them to mice treated with a saline solution (placebo).  Mice with the extra chromosomal material that were treated with NAP and SAL in the womb learned as well as mice that did not have the extra chromosome, and significantly faster than mice with the extra chromosome that were treated with saline solution.

“Our study has provided important information that may help in the understanding of Down syndrome,” said senior author Catherine Y. Spong, M.D., chief of the unit on perinatal and developmental neurobiology at the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), the NIH institute where the research was conducted.
Dr. Spong collaborated with first author Maddalena Incerti, M.D., Kari Horowitz MD, Robin Roberson, Daniel Abebe, Laura Toso, M.D., and Madeline Caballero, all of the NICHD Unit on Perinatal and Developmental Neurobiology.  Dr. Incerti also is affiliated with the University of Milano-Bicocca, Italy, and Dr. Horowitz now is affiliated with the University of Connecticut, Farmington.

Their findings appear online in PLOS ONE.

In an earlier study, Dr. Spong and her colleagues found that, if treated with NAP and SAL in the womb, mice with the extra copy of chromosome 16, achieved developmental milestones earlier than did mice with an extra copy of chromosome 16 that had not been treated.  In that study, the researchers examined developmental milestones for sensory, motor skill, and muscle tone development in the first three weeks of life.

“In our earlier work, we showed that treating the mice during pregnancy could prevent developmental delay as assessed with milestones,” Dr. Spong said.  “In this study, we showed that treatment with NAP and SAL not only puts the animals on a typical developmental trajectory, it also improves their ability to learn.

For the current study, pregnant mice received injections of the two protein fragments starting eight days after conception.  This is equivalent to the end of the first trimester in a human pregnancy.
The researchers tested the learning skills of the mice when the animals reached adulthood.  The mice were placed in a tank of water on a clear platform.  The tank had symbols on each wall that the mice could use to orient themselves.  Researchers then placed the mice directly in the water and timed how long it took them to locate the platform.  With repeated trials, the mice become more adept at the task and take less time to reach the platform.

Over five days of testing, the researchers found that the time spent searching for the platform decreased substantially for all groups except the mice with the extra copy of chromosome 16 that were not treated with NAP and SAL in the womb.

The research of Dr. Spong’s team is part of an NIH-wide focus on Down syndrome outlined in a 2007 Down syndrome research plan.  The plan highlights research priorities for the field, including establishing a Down syndrome patient registry, which was announced Oct. 25, 2012.

About the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD): The NICHD sponsors research on development, before and after birth; maternal, child, and family health; reproductive biology and population issues; and medical rehabilitation. For more information, visit the Institute’s website.  

About the National Institutes of Health (NIH): NIH, the nation's medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit