You can support Natalie and her fundraising for Down Syndrome NSW here.I am going to be running in the Gold Coast Marathon on 7 July 2013. It has given me the opportunity to raise funds for Down Syndrome NSW.
Monday, 20 May 2013
Natalie runs 42k all the way for Down Syndrome NSW!
Thank you Natalie Bartolo, for your support of the work of Down Syndrome NSW, and our best wishes for your preparation and training and for the Marathon:
On Down syndrome-Autism dual diagnosis
Theory of Mind: Having Empathy and Sympathy for Others
Bill Nason, Autism Discussion Page, posted Friday 17th May 2013
From a developmental model, like DIR (Greenspan), theory of mind comes from back and forth, affective interaction between the parents and child. It is the early interactions of parent and child engaging in emotion based, back and forth, interaction that invites the child to begin to look for, and read the feelings, perspective, and intentions of the other person. From there theory of mind grows further in pretend play with the parent, where they are acting out roles of the characters.
Down Syndrome-Autism Connection
This is a US based organisation, whose activities include global outreach through social media:
Down Syndrome-Autism Connection and the (US) National Down Syndrome Congress are offering a DS_Autism track, for the first time, as part of the highly regarded NDSC annual Convention in Denver, Colorado in July this year. Read more here, on the NDSC website. Papers and recordings from the Convention will be available to those unable to attend, shortly after the event.
From a developmental model, like DIR (Greenspan), theory of mind comes from back and forth, affective interaction between the parents and child. It is the early interactions of parent and child engaging in emotion based, back and forth, interaction that invites the child to begin to look for, and read the feelings, perspective, and intentions of the other person. From there theory of mind grows further in pretend play with the parent, where they are acting out roles of the characters.
Down Syndrome-Autism Connection
This is a US based organisation, whose activities include global outreach through social media:
Welcome to our new BLOG...where families and their supporters will post their stories, challenges and triumphs with the Down Syndrome-Autism Connection™ family.
Come and join us. Share your experiences. Educate the world. And join a community of people who have definitely walked a mile in your shoes.
Down Syndrome-Autism Connection and the (US) National Down Syndrome Congress are offering a DS_Autism track, for the first time, as part of the highly regarded NDSC annual Convention in Denver, Colorado in July this year. Read more here, on the NDSC website. Papers and recordings from the Convention will be available to those unable to attend, shortly after the event.Saturday, 18 May 2013
Weekend reading and viewing: 18th - 19th May 2013
Sophie's candid camera and pluck moves Gillard to tears
Dan Harrison, Sydney Morning Herald, 16th May 2013
She is the girl that brought the Prime Minister to tears. Twelve-year-old Sophie met Julia Gillard when she announced her plan to increase the Medicare levy to help pay for DisabilityCare.
Sophie, who has Down syndrome, saw the Prime Minister again later that week when, with Victorian Premier Denis Napthine, she signed an agreement to roll out the scheme across the state. A budding photographer, she asked the Prime Minister whether she could take her photo.
And check out Julia Gillard's new profile photo on Facebook: This photograph was taken by Sophie Deane, a 12 year old girl from Melbourne with Down Syndrome.
Dan Harrison, Sydney Morning Herald, 16th May 2013
She is the girl that brought the Prime Minister to tears. Twelve-year-old Sophie met Julia Gillard when she announced her plan to increase the Medicare levy to help pay for DisabilityCare.
Sophie, who has Down syndrome, saw the Prime Minister again later that week when, with Victorian Premier Denis Napthine, she signed an agreement to roll out the scheme across the state. A budding photographer, she asked the Prime Minister whether she could take her photo.
And check out Julia Gillard's new profile photo on Facebook: This photograph was taken by Sophie Deane, a 12 year old girl from Melbourne with Down Syndrome.
Craig Wallace, Ramp Up, 15th May 2013
Craig Wallace reflects on the "hope, reward and opportunity" offered by the 2013/14 Federal Budget: One of the best things to happen to disability over the last few years has been seeing our transformation from a single issue group wallowing at the margins of progressive politics to a bipartisan movement with champions across the Parliament.A moment in time
Every Australian Counts, 16th May 2013
This week our government passed legislation that will deliver secure, ongoing funding for the National Disability Insurance Scheme, now known as DisabilityCare. Together we have changed our country for the better, for good. Watch and share this video today to celebrate this moment in history.
Christine and Erin
Christien Regan, NSW Council on Intellectual Disability
On the 12th October 2002, just as Bali was being bombed, my beautiful daughter with Down syndrome was having a devastating stroke. Prior to the stroke, Erin was a vital young woman of 25 years.
More in the NSW CID series, 'Real Stories' can be read here.
Different Sneakers
Jessica Melville, (US) National Down Syndrome Society
At 17 years old, Jessica discovered she was pregnant with a baby (Jaylin) with Down syndrome. This is the story of how she came to terms with the diagnosis that changed her world.
Different Sneakers
Jessica Melville, (US) National Down Syndrome Society
At 17 years old, Jessica discovered she was pregnant with a baby (Jaylin) with Down syndrome. This is the story of how she came to terms with the diagnosis that changed her world.
Video, and a link to an expanded written version.
The Junction House Band: 25 years and still rocking
Accessible Arts, 16th May 2013
Started by residents of The Junction House, a non-residential community centre for adults with a mild intellectual disability, the band is notable for having three founding members still in the lineup. Vocalist Brook Crowley, pianist Albert Blackley and Tony Elkins on bass have been with the band for over 25 years. Acoustic guitarist Nina Gotsis (who has Down syndrome), violinist Rebecca White and Greg Chui on electric guitar complete the current lineup.
Heart Surgery, Down Syndrome And A Graphic Novel
Chip Reece, Bleeding Cool, 13th May 2013
In 2010 I would have laughed myself into a coma had I been told I would be writing a comic book. Actually, the truth is I didn’t do much laughing at all, because it was the scariest year of my life. That was the year we found out my unborn son would have a congenital heart defect, and several characteristics common with Down syndrome ... The Junction House Band: 25 years and still rocking
Accessible Arts, 16th May 2013
Started by residents of The Junction House, a non-residential community centre for adults with a mild intellectual disability, the band is notable for having three founding members still in the lineup. Vocalist Brook Crowley, pianist Albert Blackley and Tony Elkins on bass have been with the band for over 25 years. Acoustic guitarist Nina Gotsis (who has Down syndrome), violinist Rebecca White and Greg Chui on electric guitar complete the current lineup.
Heart Surgery, Down Syndrome And A Graphic Novel
Chip Reece, Bleeding Cool, 13th May 2013
Tea Time
Dave Hingsburger, Rolling Around in My Head, 17th May 2013
We had our tea, I had gone with a friend from work, and chatted in the cafe. It was full of sound and laughter and great good spirit. My tea was good. The whole experience was better.
Human Rights Commission lobbying for legal reform for intellectually disabled
Nance Haxton, The World Today (ABC Radio), Tuesday, March 5, 2013
The Human Rights Commission is lobbying the country's top lawmakers for national reforms that would allow people with an intellectual disability to give evidence in court proceedings. Many cases of alleged sexual abuse against disabled people in Australia don't proceed to court, because people with an intellectual disability are often seen as unreliable witnesses.
Friday, 17 May 2013
'Finally a more caring, equitable approach'
An opinion piece from Community Disability Alliance Hunter:
Linda Hughes and Catherine Mahony, Newcastle Herald, May 15, 2013
It’s hard to remember a time when disability was in the headlines as often as it is these days.
Even better, it’s featuring in a good news story of bipartisan support for a social reform that will dramatically and positively change the lives of over 400,000 Australians.
It’s hard to remember a time when disability was in the headlines as often as it is these days.
Even better, it’s featuring in a good news story of bipartisan support for a social reform that will dramatically and positively change the lives of over 400,000 Australians.
... In less than two months, DisabilityCare will become a reality, which Hunter residents with disability and their families will be among the first to experience. ... For the people with disability and families whom (the Prime Minister) has met, as well as for thousands of Hunter residents, the National Disability Insurance Scheme will change lives in ways we have not yet begun to imagine
Free information sessions on individualised funding: regional NSW
Free information sessions, presented by Resourcing Families:
"Individualised Funding in NSW - What could it mean for you?"
"Individualised Funding in NSW - What could it mean for you?"
Tuesday 4th June Wagga Wagga
Wednesday 5th June Queanbeyan
Thursday 6th June Mittagong
Friday 7th June Bankstown
Tuesday 25th June Tweed Heads
Wednesday 26th June Lismore
Thursday 27th June Grafton
Friday 28th June Armidale
Thursday, 16 May 2013
Arts news
Teaching Creative Arts in the Special Needs Classroom
Only 50 spaces are available at this accredited teachers' professional development day - a partnership between Sydney Opera House, the Museum of Contemporary Art and Accessible Arts, so book early!
Monday 15 July
Sydney Opera House and the MCA.
You will discover how dance, music, theatre and visual arts can unlock your students’ learning in stimulating and enjoyable ways and learn practical strategies to incorporate the arts into your classroom practice.
Performance in the Gallery - Hawkesbury
A series of ten workshops held for people with mild to moderate physical and intellectual disabilities during school terms. Covering a wide range of skills including sound making, gesture and action, movement and stillness, and performance making with text, workshops are held in the fun, friendly and stimulating environment of the Hawkesbury Regional Gallery, surrounded by art.
Registration for terms 3 and 4 now open.
Ablefest - Call for Entries
Parramatta Council is seeking to increase positive media images of people with disabilities. We’re looking for short films that promote positive perceptions and the rights of people with disabilities.
Films can be a satire, drama, comedy, action, animation, or documentary etc., so long as they fulfil this requirement.
Entry deadline 4pm Thursday, 19 September, 2013
Accessible Arts Annual Report - available online
Accessible Arts is the peak arts and disability organisation across New South Wales.
Its 2012 Annual Report is now available for download. Chairperson Emeritus Professor Sharman Pretty is impressed by the depth, breadth and reach of our organisation ...
Library Thursday 16th May 2013
Film
If only there were a way of being in New York City at the end of May to attend the Sprout Film Festival ('a showcase of films featuring people with intellectual disabilities') at The Metropolitan Museum of Art ...
We received an email from Welcome Change Productions drawing attention to a series of “poetry videos” from Sprout, some of which have been uploaded to You Tube - start with Hold Me Down , written by Cam Lasley, a New Yorker with Down Syndrome. You can read an interview with the founder of Sprout, Anthony Di Salvo here.
Wednesday, 15 May 2013
2013 - 2014 Federal Budget and the NDIS: content and commentary
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| Image: NDIS Overview - DisabilityCare Australia, p 2 |
- 2013 - 2014 Commonwealth Budget - NDIS Overview - DisabilityCare Australia Budget paper on DisabilityCare Australia (NDIS)
Every Australian Counts campaign, 14th May 2013
The Federal Government handed down its Budget on Tuesday 14 May. In it Treasurer Wayne Swan outlined the Government’s plan to fully fund the National Disability Insurance Scheme.
The Federal Government handed down its Budget on Tuesday 14 May. In it Treasurer Wayne Swan outlined the Government’s plan to fully fund the National Disability Insurance Scheme.
John Della Bosca, Every Australian Counts Campaign Director, said:
“The Budget rights a wrong that has existed for decades. Australia has failed people with a disability and those who care for them. Tonight’s Budget demonstrates that we are a nation that does what is right.
“Tonight’s Budget makes the dream of the NDIS a certainty.”
People with Disability Australia, 14th May 2013
People with Disability Australia welcomes the Government's commitment to lock in full funding for the NDIS through a commitment of $14.3 billion of new money over seven years to move to full implementation of the scheme by 1 July 2019.
"This is an important moment for Australians with a disability and provides a lifeline to around 460,000 people with disability and families mired in crisis," said People with Disability Australia President Craig Wallace.
"We now call on the coalition to support a permanent levy flowing into a secured fund as a way of safeguarding the scheme and ensuring that it continues to grow and manage growing future demand for disability services," said Mr Wallace. "We cannot afford a return to the rationed system which kept 600,000 people in poverty and locked out of employment."
"The creation of this investment fund growing over ten years will raise $20.4 billion and the future of the fund is linked to the future of the NDIS and the future sustainability of the financial arrangements with the states," said Mr Wallace.
People with Disability Australia supports the linking of these payments to the performance of states and territories in delivering the NDIS and extending coverage across their eligible populations and calls upon Western Australia to sign onto the scheme and meet the conditions so that Western Australians with disability can access this additional support.
"Deloitte Access Economics report has identified a $43 billion dollar increase in GDP if Australia increases the participation rate by around one third," said Mr Wallace. "There is a very clear return to the Australian people and the money invested will go directly to disability care and the spending will be transparent."
Case study: family with disabled children
Sydney Morning Herald, 15th May 2013
'It does give the security my kids need.'
People with Disability Australia welcomes the Government's commitment to lock in full funding for the NDIS through a commitment of $14.3 billion of new money over seven years to move to full implementation of the scheme by 1 July 2019.
"This is an important moment for Australians with a disability and provides a lifeline to around 460,000 people with disability and families mired in crisis," said People with Disability Australia President Craig Wallace.
"We now call on the coalition to support a permanent levy flowing into a secured fund as a way of safeguarding the scheme and ensuring that it continues to grow and manage growing future demand for disability services," said Mr Wallace. "We cannot afford a return to the rationed system which kept 600,000 people in poverty and locked out of employment."
"The creation of this investment fund growing over ten years will raise $20.4 billion and the future of the fund is linked to the future of the NDIS and the future sustainability of the financial arrangements with the states," said Mr Wallace.
People with Disability Australia supports the linking of these payments to the performance of states and territories in delivering the NDIS and extending coverage across their eligible populations and calls upon Western Australia to sign onto the scheme and meet the conditions so that Western Australians with disability can access this additional support.
"Deloitte Access Economics report has identified a $43 billion dollar increase in GDP if Australia increases the participation rate by around one third," said Mr Wallace. "There is a very clear return to the Australian people and the money invested will go directly to disability care and the spending will be transparent."
Case study: family with disabled children
Sydney Morning Herald, 15th May 2013
'It does give the security my kids need.'
Tips and tools for living with celiac disease
May is Celiac Awareness Month in the US. Joan Medlen, dietician, parent and author of The Down Syndrome Nutrition Handbook, is contributing through her blog, or you can request email alerts:
Awareness about celiac disease is especially important for people with Down syndrome and those who support them. Regardless of family history, it’s a possibility for everyone with Down syndrome.
With that in mind, I’ve decided to share a tip a day in the month of May about Celiac disease and its treatment, a gluten-free diet.
... read more here, at Down Syndrome Nutrition
Tuesday, 14 May 2013
Hands Can Talk: Proloquo2go workshops
Are you interested in attending a Proloquo2Go workshop? Hands Can Talk has some coming up and you must book in to attend.
Some places still available
MAY 25th 9.30am to 4pm
- see the new features, hear the new Australian children's voices,
- see how Proloquo2Go works with Scan switch.
- learn how to navigate your way through Proloquo2Go,
- set up a user
... and much much more.
MAY 15th 9.30am to 4pm
MAY 15th 9.30am to 4pm
Learning Links Mt Pritchard
$50 each BYO lunch.
Some places still availableMAY 25th 9.30am to 4pm
North Rocks
$50 each BYO lunch.
2 vacancies only
MAY 28th 9.30am to 4pm
MAY 28th 9.30am to 4pm
Mayfield
$60 (lunch included).
Enquiries and booking: Aileen Ryan at Hands Can Talk, 02 9824 8332
Enquiries and booking: Aileen Ryan at Hands Can Talk, 02 9824 8332
Two nomination processes now open: one NSW, one national
- Nominate a NSW Don't DIS my ABILITY ambassador for 2013
Nominations are open from 9.00am Monday 13 May until midnight Monday 10 June.
Each year, a number of people are selcted to be ambassadors for the NSW Don’t DIS my ABILITY campaign. Ambassadors support and strengthen Don’t DIS my ABILITY by serving as the voice of the campaign to the community. With help from campaign staff, ambassadors communicate key campaign messages, share personal stories, and ultimately raise awareness of the abilities and achievements of people with disability.... read more about the nomination process here.
- National Disability Awards 2013
The 2013 National Disability Awards will take place in the Great Hall at Parliament House in Canberra on Tuesday 26 November 2013.
Nominations in nine categories are now open and are scheduled to close on 5pm AEST Friday 28 June 2013.
Monday, 13 May 2013
Northern Territory signs up for the NDIS
All in, except Western Australia:
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| Image: Every Australian Counts campaign, 11th May 2013 |
- Disabilitycare Australia to be rolled out in The Northern Territory, joint media release, Minister for Disability Reform Jenny Macklin, with Prime Minister Julia Gillard and Northern Territory Chief Minister Adam Graham Giles, 11th May 2013
Down Syndrome NSW Family Picnic Day
Keep the first Sunday in June free as Down Syndrome NSW will be hosting a traditional picnic in the park for people with Down syndrome and their friends and family. All ages welcome.
Bring along your picnic paraphernalia - rugs, baskets and food to share. This is an informal, free community event and a great way to connect with other families, catch up with old friends and make new ones.
10am - 2pm, Sunday 2 June 2013
Timbrell Park, Five Dock (Sydney)
Sunday, 12 May 2013
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Saturday, 11 May 2013
Weekend reading and viewing: 11th - 12th May 2013
Joel Deane, The Wheeler Centre, 6th May 2013
Last week, (Joel Deane) attended a public high school open day, looking for a high school for his daughter – and was sadly reminded that discrimination is alive and well in today’s Australia.
Commonwealth discriminates against people with intellectual disability, High Court rules
Commonwealth discriminates against people with intellectual disability, High Court rules
National Council on Intellectual Disability, 10th May 2013
Today, the High Court of Australia dismissed the Commonwealth’s application to appeal the Federal Court decision which ruled that the Business Services Wage Assessment Tool (BSWAT) discriminated against people with intellectual disability.Today’s decision is a triumph for the human rights of people with intellectual disability in Australia.
Tips for Helping Your Child Build Social Skills
By NCLD Editorial Team, National Centre for Learning Disabilities, undated
Tips for Helping Your Child Build Social Skills
By NCLD Editorial Team, National Centre for Learning Disabilities, undated
... Depending on the nature and severity of your child’s learning disability, he or she may need additional support from you to develop strong social skills — skills that are critical for building and maintaining friendships. Guiding your child through various social scripts will enable him or her to navigate such situations with greater ease and less apprehension, especially when he or she is interacting with other children.
Understanding speech problems in children with Down syndrome
Jennifer Bekins, Talk - Down Syndrome, 6th May 2013
... Contrary to comments I’ve heard, there is no such thing as “Down syndrome speech.” Unclear speech is a symptom of a larger problem. It is important to mention that before your child undergoes a speech evaluation, make sure they’ve had a recent hearing test (within 12 months to the test date). Even mild hearing loss can affect your child’s ability to hear sounds and produce them accurately.
The first of a series of posts on this topic - here is the second, posted on 9th May.
Vision and Down syndrome
Understanding speech problems in children with Down syndrome
Jennifer Bekins, Talk - Down Syndrome, 6th May 2013
... Contrary to comments I’ve heard, there is no such thing as “Down syndrome speech.” Unclear speech is a symptom of a larger problem. It is important to mention that before your child undergoes a speech evaluation, make sure they’ve had a recent hearing test (within 12 months to the test date). Even mild hearing loss can affect your child’s ability to hear sounds and produce them accurately.
The first of a series of posts on this topic - here is the second, posted on 9th May.
Vision and Down syndrome
Interview with Danielle Ledoux, NDSS
Down syndrome has effects on the developing eye, which could impact the proper development of vision. Eye disease is reported in over half of patients with Down Syndrome, from less severe problems such as tear duct abnormalities to vision threatening diagnoses, such as early age cataracts. Particular attention should be given to vision in people with Down syndrome.
Creating opportunities to connect
Sharon Williams, Resourcing Families
Our family has never been keen on respite. For a start, we don’t like the word. For us, it makes it seem like our son is a burden that we want to escape. We don’t feel that way and we don’t want George or his brother or sister to ... Recently, we have decided that we need to think more creatively about facilitating connections (for George). Surprisingly, one of the resources that we have decided to tap into is respite funding – but not in a traditional way and we don’t call it that.
NDIS Update: a summary of John Della Bosca’s Facebook Q and A
Down syndrome has effects on the developing eye, which could impact the proper development of vision. Eye disease is reported in over half of patients with Down Syndrome, from less severe problems such as tear duct abnormalities to vision threatening diagnoses, such as early age cataracts. Particular attention should be given to vision in people with Down syndrome.
Creating opportunities to connect
Sharon Williams, Resourcing Families
NDIS Update: a summary of John Della Bosca’s Facebook Q and A
Every Australian Counts, 9th May 2013
On Tuesday, 6 May the Every Australia Counts Campaign Director John Della Bosca held a Q and A on our Facebook page to answer supporters’ questions about recent developments in the campaign and what it will mean for people on the ground.
Next steps for DisabilityCare Australia in New South Wales
NSW Ageing, Disability and Home Care media release, 9th May 2013
On Tuesday, 6 May the Every Australia Counts Campaign Director John Della Bosca held a Q and A on our Facebook page to answer supporters’ questions about recent developments in the campaign and what it will mean for people on the ground.
Next steps for DisabilityCare Australia in New South Wales
NSW Ageing, Disability and Home Care media release, 9th May 2013
A clear pathway for participants to access DisabilityCare Australia in the Hunter launch area was announced today by the Australian and New South Wales Governments ... The first stage of the launch in New South Wales will cover the local government areas of Newcastle, Lake Macquarie and Maitland ...
No Goodbyes
Rudely Interrupted, December 2012
Rudely Interrupted are one of Australia's truly unique indie rock acts.
No Goodbyes
Rudely Interrupted, December 2012
Rudely Interrupted are one of Australia's truly unique indie rock acts.
In this film Maria Shriver tells the story of how her mother, Eunice Shriver, founded Special Olympics, broke through social barriers, and in doing so, showed Maria the gift of possibility.
6 secrets special needs Moms know but WON'T tell you
6 secrets special needs Moms know but WON'T tell you
Suzanne Perryman, Special Needs Mom, 14th April, 2013
... I have secrets. Things I don’t talk about and stuff that other moms don’t know,or may have forgotten along the way ...
What do you really want for Mother’s Day?
Amy Baskin, Kids Grow Up, 11th May 2012
A blog on parenting young adults with special needs, from the author of More Than a Mom (Woodbine House).Amy Baskin, Kids Grow Up, 11th May 2012
Friday, 10 May 2013
New logo for Down Syndrome NSW
You will have noticed the new Down Syndrome NSW logo over on the right -->>>
Over the next couple of months it will replace the old one, as we refresh some of our publications. The logo is consistent with Down Syndrome Australia's. Many thanks and much appreciation to Lyndall Thomas from The Information Access Group in Melbourne for the graphic design work.
Theatre call-out: Wagga Wagga
All Abilities Theatre Company provides opportunities for people with a disability to develop theatrical and staging skills. Enrolments are now open to those with a disability and an interest in theatre for the company's next production. Previous acting experience is not required.
Rehearsals will run twice weekly from 22 May to 12 October followed by two public performances at Wagga Wagga Civic Theatre on 16 and 17 October.
Rehearsals will run twice weekly from 22 May to 12 October followed by two public performances at Wagga Wagga Civic Theatre on 16 and 17 October.Constructing Futures: survey of parents' aspirations for young adults with intellectual disabilities
An Australian Research Council Linkage Project in partnership with Endeavour Foundation:
You are invited to participate in Constructing Futures: survey of parents' aspirations for young adults with intellectual disabilities, a survey aimed at increasing our understanding of what parents hope the lives of their young adult with an intellectual disability will be.
We are asking parents of a young adult with an intellectual disability between the ages of 18 and 30 years to respond to the survey.
You can open the survey and respond to the questions at any time until the end of 2013. We anticipate the survey will take between 20-30 minutes to complete.
This project aims todevelop a better understanding of theaspirations for their adult life that are held by young adults with an intellectualdisability, and by their parents.
Organisations that provide services to this vulnerable group will be able to use the results to examine current, and guide future, service provision for this group.
Thursday, 9 May 2013
Library Thursday, 9th May 2013
Calling on Artists and Photographers
Back into the swing of things after our move!
Time to start sending in photos of people with Down syndrome for our annual calendar. The deadline for submissions is the end of June 2013.
Down Syndrome NSW
PO Box 107
Northmead NSW 2152
We are also seeking artworks (photos, drawings, paintings, mixed media etc) created by people with Down syndrome, to use as illustration in our publications, thereby showcasing the creative activities of people with Down syndrome.
It is preferable that scanned and/or photographic images be at print resolution ie 300 dpi. Acknowledgement of the creator of the work will be given.
Feel free to contact Jo at the library email address below for more information
Please submit scanned images and/or photos to library@dsansw.org.au
Please include details of the artists name, age and year of production, if possible, in a folder labeled “Images for DS NSW Publications by ____”
Back into the swing of things after our move!
Time to start sending in photos of people with Down syndrome for our annual calendar. The deadline for submissions is the end of June 2013.
The preferred format is JPEG, although photographic prints will be accepted. Please forward digital files to admin@dsansw.org.au
Prints to be sent to our new postal address:
Prints to be sent to our new postal address:
Down Syndrome NSW
PO Box 107
Northmead NSW 2152
We are also seeking artworks (photos, drawings, paintings, mixed media etc) created by people with Down syndrome, to use as illustration in our publications, thereby showcasing the creative activities of people with Down syndrome.
It is preferable that scanned and/or photographic images be at print resolution ie 300 dpi. Acknowledgement of the creator of the work will be given.
Feel free to contact Jo at the library email address below for more information Please submit scanned images and/or photos to library@dsansw.org.au
Please include details of the artists name, age and year of production, if possible, in a folder labeled “Images for DS NSW Publications by ____”
NDIS update
Over the last few days, while a levy to help fund the NDIS has been agreed across political parties (and widely debated), Tasmania, Victoria and Queensland's State governments have now signed up to full implementation, leaving Western Australia and the Northern Territory the only two still to agree.
NDIS Update #43 was issued on 7th May 2013
NDIS Update #42 was issued on 6th May 2013
Sign up for email updates or read previous updates on the NDIS website here.
To keep up with media reports from around Australia, on the NDIS (and other matters related to disability), you can sign up to national peak body, People With Disability Australia's Daily Media Roundup
- Queensland signs up to the NDIS - Every Australian Counts news report and photo.
NDIS Update #43 was issued on 7th May 2013NDIS Update #42 was issued on 6th May 2013
Sign up for email updates or read previous updates on the NDIS website here.
To keep up with media reports from around Australia, on the NDIS (and other matters related to disability), you can sign up to national peak body, People With Disability Australia's Daily Media Roundup
Wednesday, 8 May 2013
Reminder - photos for Mothers Day gallery
Thank you for the wonderful photos already received for our Mothers Day gallery, to be published this coming Sunday. If you would still like to contribute, please send your photo of the person you care for who has Down syndrome, with their mother, to downsyndromenswblogs@gmail.com by the end of tomorrow (Thursday, 9th May).
Images will be posted without captions - they will speak for themselves.
Images will be posted without captions - they will speak for themselves.
T4321 in Bourke
Scrapheap Adventure Ride 2013 wasn't the only event celebrating World Down Syndrome Day and raising awareness about people with Down syndrome in far north western NSW recently. The community of Bourke once again rallied for the cause around the local family of Kruz Ryan, holding a T4321 event, reporting it in their local paper, and raising over $1000 to support the work of Down Syndrome NSW!
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| Kruz Ryan, with his Mum, Lynette Gooch, Gay Bock, Melanie Hayman and Karen McKenna |
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| Helper and supporters for T4321 in Bourke, 2013 |
Kruz's mother, Lynette said 'A big thank you to everyone who made a donation, or bought a plate from our ittle local boy. We live in an amazing community filled with generous, supportive people,' thanks echoed by all at Down Syndrome NSW.
Tuesday, 7 May 2013
'Q and A' on the NDIS earlier today
The Every Australian Counts campaign for the National Disability Insurance Scheme held a Q and A this morning, via their Facebook page. It is recorded in the 100 + comments and replies following the post there, dated today, and headed by this logo:
Disability and retirement: Inclusive and active ageing - seminar
Centre for Disability and Research Policy (University of Sydney):
Older Australians with a disability are working in open employment and in Australian Disability Enterprises (ADEs), but many know little about retirement and are ill-prepared for their third age. What will they do when they are no longer working? Will they be socially isolated and bored or will they enjoy an active, socially connected retirement? How can disability service providers support these individuals to plan for and achieve a fulfilling retirement?
Older Australians with a disability are working in open employment and in Australian Disability Enterprises (ADEs), but many know little about retirement and are ill-prepared for their third age. What will they do when they are no longer working? Will they be socially isolated and bored or will they enjoy an active, socially connected retirement? How can disability service providers support these individuals to plan for and achieve a fulfilling retirement?
1 pm - 5 pm Friday 14th June, 2013
University of Sydney, Camperdown
Monday, 6 May 2013
People with Down syndrome living life to the full
Self-advocate helps all
Olivia Lepore Thriving (Boston Children’s Hospital blog), 30th April, 2013
... “We are very grateful for the addition of the self-advocate position,” ... Nate — and his predecessor, Ben Majewski — have been remarkably successful matches.”
Not dancing, flying
... It was an overcast day in March when the dancers of e.motion21 took to the Federation Square stage to celebrate World Down Syndrome Day. The dance troupe, made up of children and young adults with Down syndrome, defied conventional expectations and filled the stage with an enthusiastic energy ... read the full story here
Honorary Doctorate
Congratulations to Karen Gaffney who will receive an honorary doctorate from the University of Portland today. Karen will become one of very few people with Down Syndrome to ever receive an honorary doctorate from a college or university.
Olivia Lepore Thriving (Boston Children’s Hospital blog), 30th April, 2013
At Boston Children’s Hospital, the Down Syndrome Program has found a way to give hope to both parents and children who come to the clinic — his name is Nate Simons. Simons is a valued 24-year-old member of the program’s staff, and like the children he interacts with at the clinic, he has Down syndrome.
... “We are very grateful for the addition of the self-advocate position,” ... Nate — and his predecessor, Ben Majewski — have been remarkably successful matches.”
Not dancing, flying
... It was an overcast day in March when the dancers of e.motion21 took to the Federation Square stage to celebrate World Down Syndrome Day. The dance troupe, made up of children and young adults with Down syndrome, defied conventional expectations and filled the stage with an enthusiastic energy ... read the full story here
Honorary Doctorate
Congratulations to Karen Gaffney who will receive an honorary doctorate from the University of Portland today. Karen will become one of very few people with Down Syndrome to ever receive an honorary doctorate from a college or university.
(Billy Shulz was awarded an Honorary Doctorate posthumously, by West Carolina University, in 2012.)
Saturday, 4 May 2013
Weekend reading and viewing, 4th - 5th May 2013
Paul Sawka, Paul's Blog (Canadian Down Syndrome Society), 22nd April 2013
I am proud to be graduated from Columbia College ...It was hard work to get to college but once I was in college I enjoyed the work I got to do.
Our Scrapheap Adventure, Back o' Bourke 2013
Roger and Michelle Bamber, Keeping Up with DS NSW, 1st May 2013
In case you missed it earlier ... My husband and I with our three boys had the fantastic opportunity to join the Scrapheap Adventure Ride this year to the Back O’ Bourke, and it turned out to be a perfect adventure for three young boys ... My oldest son Josiah who is almost sixteen and has Down syndrome, became ‘one of the boys’ very quickly and it wasn’t long before he had conned his way onto a bike.
DS/ASD as I know it: The process of diagnosing autism in children with Down syndrome,
Jennifer Bekins, Talk-Down Syndrome, 1st May 2013
Having a clear diagnosis opens the door for appropriate services. Areas of need should guide treatment.Roger and Michelle Bamber, Keeping Up with DS NSW, 1st May 2013
In case you missed it earlier ... My husband and I with our three boys had the fantastic opportunity to join the Scrapheap Adventure Ride this year to the Back O’ Bourke, and it turned out to be a perfect adventure for three young boys ... My oldest son Josiah who is almost sixteen and has Down syndrome, became ‘one of the boys’ very quickly and it wasn’t long before he had conned his way onto a bike.
DS/ASD as I know it: The process of diagnosing autism in children with Down syndrome,
Jennifer Bekins, Talk-Down Syndrome, 1st May 2013
“Didn’t you get tested?”
Rachel Adams, Salon, 29th April 2013
... Since Mother’s Day is just around the corner, here’s the gift I’d most like to receive ... please remember that Henry is a child, not a political statement.
... Since Mother’s Day is just around the corner, here’s the gift I’d most like to receive ... please remember that Henry is a child, not a political statement.
Day in the Life of Robert
Ontario Ministry of Community and Social Services (undated)
At 35 years old, Robert has already lived a life fuller than most, despite early predictions from doctors that he wouldn’t even be able to so much as walk or talk. But walk and talk he does.
Tom Bachofner, The Future's Rosie, 1st May 2013
... my train of thought has been knocked off kilter this last week or so. My mind has been stuck in a little rut consuming itself with those dreaded 'What ifs'... Liz Szabo, USA Today, 1st May 2013
The lives of the 250,000 Americans with Down syndrome today are radically different than a generation ago ... Advocates for people with Down syndrome feel a new urgency to spread the word about these advances, as more women undergo prenatal tests for Down syndrome and other genetic conditions.
With Down syndrome diagnosis comes a wrenching choice
Liz Szabo, USA Today, 1st May 2013
... In some ways, medicine's ability to map out a person's genetic identity is outpacing society's understanding of what it means to live with a disability, or raise a child with one, says G. Kevin Donovan, a pediatrician and director of the Edmund Pellegrino Center for Clinical Bioethics at Georgetown University in Washington
Connect2Educate: AAC and iPads in the Classroom,
Connect2Educate: AAC and iPads in the Classroom,
Jane Farrall, Literacy, AAC and Assistive Technology blog, 2nd May 2013
Friday, 3 May 2013
This week for the NDIS: bipartisan political support, increased community interest
The National Disability Insurance Scheme, and its funding has been prominent in the media over the last few days, the week ending with apparent bipartisan support for a levy to at least part fund it, and relevant legislation to be introduced into the current Parliament. A search for 'NDIS" in any online news service will throw up a list of reports and opinions.
- Anger subsides as leaders reach NDIS compromise, Stephanie Peatling, The Age, and Sydney Morning Herald, 2nd May 2013
The Australian community will be the winner from the finalisation of the national disability insurance scheme.Yes, there are many questions that have not been answered about how the scheme will work (not the least of which is where the rest of the funding will come from) and not much time in which to answer them.But they can be answered and Parliament can do this.
Let’s meet good faith with optimism. What a way for the 43rd Parliament to end.
- Follow links to the stream of news reports and analyses on the Down Syndrome Australia Facebook page
Interest in how the NDIS will impact on individuals and families has been heightened by responses to remarks made by the CEO of Myer and other business leaders. The outcome might not have been anticipated by those business leaders, but the interest generated has been welcomed.
- As Kurt Fearnley tweeted yesterday: Disability discussed across the country. What a great couple of days, with the potential of permanent positive change.
- Hijacking the NDIS, Kathryn Wicks, the Sydney Morning Herald's Community Editor and co-author of the Australian Autism Handbook 2013, comments on the response from business.
The Every Australian Counts campaign continues to monitor progress, promote the need for an NDIS, and explain what it will mean for all Australians. In an email to supporters today, the campaign director, John Della Bosca said:
It's been a great week, one of so many in this long fight for the NDIS. Thank you always for your support - none of this happens without you. A lot has happened in the campaign this week and we know that many of you will be wondering what it all means.
On Tuesday 7th May John Della Bosca will host a live Q and A on the Every Australian Counts Facebook page from 2.00 pm to answer your questions.
Spectronics iPad workshops for educators to be repeated in Sydney, Melbourne and Brisbane
Excellent news for educators who might have missed the earlier sold-out workshops, from Spectronics. the special education and technology people:
In response to MANY requests, we are repeating our very popular one-day (iPad) workshops again this month. Only in Sydney, Melbourne and Brisbane this time around.
Sydney Tuesday 21st May 2013Melbourne Wednesday 29th MayBrisbane Friday 31st May
Thursday, 2 May 2013
New book on body language
Body Talk - Teaching Students with Disabilities about Body Language
Children and teens with autism and other developmental disabilities can be taught the language of nonverbal communication with the practical strategies developed by veteran special education teacher Pat Crissey. More than 100 activities break down elements of body language into teachable components.
Note - Woodbine House does not accept online orders from Australia - purchases must be made through a third party supplier.
Forum on Intellectual Disability, Mental Health and School Education
For professionals working in education, disability services, mental health and health.
31st May 2013
9.00am to 3.45pm
St George Hospital Research and Education Centre
South St, Kogarah
The aim of the forum is to promote better services for children and young people at school with an intellectual disability who also have a mental illness.
For the draft program click here.
Source: CHW School-Link
South St, Kogarah
The aim of the forum is to promote better services for children and young people at school with an intellectual disability who also have a mental illness.
For the draft program click here.
Source: CHW School-Link
Wednesday, 1 May 2013
More on NDIS funding ...
Debate and reporting on funding National Disability Insurance Scheme continues across national news media today, including an expanded response from Stella Young, following yesterday's criticism of a levy:
It's just that he, like far too many Australians, seems to think that disability has nothing to do with him. He works hard for his money. Why shouldn't he get to spend it how he wants?
... In the spirit of healthy debate, news.com.au invited a response from me. I'm a fellow taxpayer, after all. I share some of Matt's concerns about wanting to decide what I spend my money on
- Why fund NDIS? Because one day you might need it, Stella Young Ramp Up 1 May 2013
... Predictably, cries of "It's so unfair" and "Why should I have to pay for these people" came thick and fast. Yesterday news.com.au published a piece by Matt Young. Despite our shared surname, Matt is no relation to me and I don't know him personally. I'm sure he's a lovely chap.
It's just that he, like far too many Australians, seems to think that disability has nothing to do with him. He works hard for his money. Why shouldn't he get to spend it how he wants?
... In the spirit of healthy debate, news.com.au invited a response from me. I'm a fellow taxpayer, after all. I share some of Matt's concerns about wanting to decide what I spend my money on
... read the full article here, on Ramp Up
... It means the NDIS will become a reality, lifting the hopes of 2 million Australians living with disabilities and their carers.
The decision, likely to be announced within days, will result in the collection of about $3.5 billion a year towards the Commonwealth's major share of the scheme. It is expected to begin in 2014.
.... In a series of mixed messages emanating from the Coalition, Opposition Leader Tony Abbott recommitted to the NDIS but questioned the wisdom of a levy and hinted that the starting date should be subject to the state of the economy.
- Labor to lock in levy rise, Mark Kenny, Sydney Morning Herald, 1st May 2013
... It means the NDIS will become a reality, lifting the hopes of 2 million Australians living with disabilities and their carers.
The decision, likely to be announced within days, will result in the collection of about $3.5 billion a year towards the Commonwealth's major share of the scheme. It is expected to begin in 2014.
.... In a series of mixed messages emanating from the Coalition, Opposition Leader Tony Abbott recommitted to the NDIS but questioned the wisdom of a levy and hinted that the starting date should be subject to the state of the economy.
... read the full article here, from the Sydney Morning Herald.
But she has indicated the proposal will not be legislated in the current Parliament - suggesting the plan to hike the Medicare levy from July 1, 2014, will be taken to the election as Labor's policy ...
- Julia Gillard announces 0.5 per cent increase in Medicare levy to fund the National Disability Insurance Scheme, Lanai Scarr, Samantha Maiden, Gemma Jones, News Limited Network, 1st May 01, 2013
But she has indicated the proposal will not be legislated in the current Parliament - suggesting the plan to hike the Medicare levy from July 1, 2014, will be taken to the election as Labor's policy ...
Our Scrapheap Adventure, Back o' Bourke 2013
My husband and I with our three boys had the fantastic opportunity to join the Scrapheap Adventure Ride this year to the Back O’ Bourke, and it turned out to be a perfect adventure for three young boys.
We took three days to drive out to Comeroo Camel Station and were the first to arrive so we were on hand to watch all the riders arrive, beginning with those from Inverell. The bikes were amazingly diverse from little postie bikes to bikes with homemade side carts kitted out with fake dogs. As more and more riders arrived we heard all sorts of stories of where each rider had come from and the adventures they had had along the way.
My oldest son Josiah who is almost sixteen and has Down syndrome, became ‘one of the boys’ very quickly and it wasn’t long before he had conned his way onto a bike. Once he had had a go on one, there was no stopping him, he walked around with a bike helmet under one arm asking anyone he could to take him riding around the property, and many of the riders obliged.
My oldest son Josiah who is almost sixteen and has Down syndrome, became ‘one of the boys’ very quickly and it wasn’t long before he had conned his way onto a bike. Once he had had a go on one, there was no stopping him, he walked around with a bike helmet under one arm asking anyone he could to take him riding around the property, and many of the riders obliged.
Other than riding, my boys also loved the freedom to roam, catching lizards and going yabbying, and of course not showering! The lack of electronic devices and phone or internet access meant that we made friends around board games. By night we were entertained by poetry recitals and music.
On the last night we were also entertained by a lively auction which added much needed funds to those already raised by the riders. One auction item on the night was a light aircraft flight that was purchased and then given to Josiah. The next morning Josiah and his brothers had a half hour flight over the station, swooping both cattle and the leaving riders. They thought it was awesome!
Altogether my family had an awesome time and I think the riders who made the journey enjoyed the weekend as well. We did have a few riders that didn’t make it due to accidents on the way. A couple of riders ended up in Bourke hospital and they tell me they were really well cared for there.
Altogether my family had an awesome time and I think the riders who made the journey enjoyed the weekend as well. We did have a few riders that didn’t make it due to accidents on the way. A couple of riders ended up in Bourke hospital and they tell me they were really well cared for there.
Personally my family really enjoyed the weekend and we would happily go again, but the weekend also plays an important role in the life of Down Syndrome NSW. It raises much needed funds to support the work of the association, this year raising around $50,000.
The Scrapheap adventure was started by Perry Gilsenan four years ago as a way of raising money and awareness for people with Down syndrome. But even more importantly we have the opportunity to raise awareness of the needs and abilities of people with Down syndrome particularly in rural areas. I would like to thank those who participated this year and for making my family feel so welcome. We can’t wait to see where Perry will have the Scrapheap Adventure take us next year.
Roger and Michelle Bamber
(Roger is on the Board of Down Syndrome NSW)
Roger and Michelle Bamber
(Roger is on the Board of Down Syndrome NSW)
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