Weekend reading and viewing: 30th November - 1st December 2013

Selfish Advocacy

Jisun Lee, Kimchi Latkes, 22nd November 2013
You know why I care so much about disability as a civil rights issue? It isn’t just about my son. I also care about disability rights for an utterly selfish reason. Me. Yes, me. I’m not considered disabled, yet, I live with 100% certainty that I will experience disability in my lifetime.

Disability is just a matter of time ...
One. The Act of One

Dave Hingsburger, Rolling Around in My Head, 20th November 2013
... They say it takes a village. That may be true. But sometimes it takes the action of just one brave person.

Living with Down Syndrome
Mario Wezel, CNN Photos, 24th November 2013
Photo essay in response to the declining birth incidence of babies with Down syndrome in Denmark.

A sneak peek into the future …
Vanda Ridley, Down's Syndrome Association blog (London), 27th november 2013
...  Poseidon is a three year project which has been funded by the European Commission. The goal of the project is to create information technology which will support people with Down’s syndrome achieve a greater level of independence in their lives. The technology will address a wide range of issues in a variety of environments including home, education, work and leisure. Types of technology that may be developed will include apps for tablets and smartphones, virtual reality programs and interactive visual tables ...

Women with disabilities at risk of violence

PM, ABC Radio, 25th November 2013

... Today is White Ribbon Day, a national campaign to end violence against women. It's an important issue for all women, including disabled women who make up 20 per cent of Australia's female population ...

Special Olympics Australia  photo gallery from the Asia Pacific Games in Newcastle, 1st - 7th December 2013, on Flickr
Several albums of photos from the preparation for and lead up to the Asia Pacific Games - will be added to throughout the week.

Next week will be busy ...

Next week will be a very busy, and exciting time for many people with disabilities, their families and friends - and that includes many, many people with Down syndrome.  

International Day of People with Disability is celebrated on 3rd December, with event usually spilling over the whole week, and the first Special Olympics Asia Pacific Games begin in Newcastle on Sunday, 1st December for a full week of competition. 

 We expect to have lots to post around those two events.

Special Olympics Australia's communications team will once again work overtime to post photos and videos from every day of the Games (there are already several albums about the preparations), to Flickr, here - check in frequently to keep up with how your friends are doing.

Special Olympics Australia announced today: 

OPENING CEREMONY LIVE ON GEM TV - Sunday 1 December.

The Opening Ceremony (a 3 hour spectacular show) of the Special Olympics 2013 Asia Pacific Games will be aired live across the Nine Network on their GEM Channel from 8.40 pm

Please share and help us to let everyone know they can be apart of the games and cheer on our 400 Special Olympics Australia Champions into the Hunter Stadium!

'Like' the Special Olympics Asia Pacific Games Facebook page for a good way to keep up with news, and stories about the athletes throughout the week.

'Like' the International Day of People with Disability Australia Facebook page to keep in touch with news and events in NSW, and all over Australia too.

Q and A with Hank Jongen (Centrelink) on Disability Support Pension

The Department of Human Services is hosting this practical event through their Facebook page. 

Do you have a question about the Disability Support Pension? 

On Tuesday 3 December from 1-2pm (AEDST), join Department of Human Services General Manager Hank Jongen where he will answer your questions during a live 1 hour Q & A session. If you have a question, all you have to do is be here on this event page on the day when we’ll open comments and post it on this event wall. 

The Q & A session will take place on International Day of People with Disability (IDPwD), as part of our celebrations.        ... Event description - further details here. 

IDPWD 21st Anniversary: Chris Bunton's video

International Day of People with Disability Australia called for people turning 21 this year to help them to celebrate IDPWD's 21st anniversary by recording a video - Chris Bunton answered the call with style, and a great message. Congratulations Chris, and happy 21st!

News and commentary on the NDIS (11)

NDIS: Breaking Down Barriers Webinar
Tuesday, 10 December 2013
12:00pm - 1:00pm (AEDT)
Breaking down barriers, pushing boundaries and forging inclusion through innovation.
We want to hear from people with disability, carers, advocates, support providers and community members about breaking down barriers.  

Please join us for this interactive online video webinar. Following the International Day of People with Disability celebrations and Breaking Down Barriers to Open Doors theme, three dynamic representatives of the disability community will join together in an inspiring discussion on breaking down barriers, pushing boundaries and forging inclusion through innovation.

Click here for information about how to tune in to the webinar.

Conflict over service delivery under the NDIS

El Gibbs, Ramp Up, 18th November 2013

In NSW, the closure of a large institution is highlighting the conflict over how governments are delivering disability services under the NDIS. El Gibbs looks into how disability service delivery is changing around Australia ...

Not Your Average Government Office

John McKenna, John McKenna's News and Views on Disability, 19th November 2013
A waiting room that’s empty makes one think, something’s not right?
This was my first reaction when entering the National office of the National Disability Insurance Scheme in Geelong yesterday ...

NDIS helps the common good

Moira Byrne Garton, Eureka Street, 19th November 2013

... Dr Maurice Newman's criticism of the former Government for establishing and funding programs such as the National Disability Insurance Scheme reveals an upsetting indifference toward those who shoulder the true cost of disability in Australia ...

Minister Fifield addresses the National Press Club - 20 November 2013
(Video 58m17s)

Direct link to You Tube: http://youtu.be/Q2wZcKcCTNE


OPINION: Stockton closure decided 15 years ago 
John Ajaka, Newcastle Herald, Nov. 20, 2013
I would like to correct some of the misconceptions surrounding the implementation of the National Disability Insurance Scheme (NDIS) in NSW.

Recently I introduced a bill to the NSW Parliament which contains the necessary measures for people with disabilities to seamlessly transition into the NDIS ...

Early figures show NDIS costs blowing out by 30 per cent

Simon Cullen, ABC News, 20th November 2013

Initial figures show the cost of rolling out the multi-billion-dollar disability insurance scheme is about 30 per cent higher than expected, raising the prospect of a broader budget blowout.

NDIS – A marathon not a sprint
John Della Bosca, Every Australian Counts, 21 November 2013
Since the National Disability Insurance Scheme (NDIS) started out on its long journey in July, it has found the road a little rocky in places.

That is not surprising, of course, with an initiative of such size and complexity. To their credit, policymakers are not allowing the obstacles to break their stride. As John Della Bosca of the Every Australian Counts Campaign put it, “It’s a great win for Australians with disability that governments are seeing the NDIS as a marathon, not a sprint ...

Special Olympics Asia Pacific Games 2013 ... the excitement is building!

Look who was on hand in Sydney on Tuesday, to help the 
Law Enforcement Torch Relay on its way to Newcastle 
for the opening of the Special Olympics Asia Pacific Games 

on Sunday 1st December - Cameron Chance!

And here's Mel Eustace promoting the opening ceremony ...



... and you'll see Mel again in this clever video about what happens when you send a 'champogram' to the Australian athletes. 

Icehouse frontman Iva Davies will perform 'Great Southern Land' at Special Olympics

Ann Hitchings, Northern District Times, 25th November 2013 

Former Epping Boys High School student and frontman of Aussie rock band Icehouse, Iva Davies, will perform his classic "Great Southern Land" at the opening ceremony of the inaugural Special Olympics Asia Pacific Games next month.

This report includes a fabulous photo of Iva Davies with Mark Jensen, Josie McLean and Lisa Vineberg.

2013 National Disability Awards announced and presented

Congratulations to all of the winners of 2013 National Disability Awards announced last night and presented at Parliament House in Canberra.

Our friends and colleagues at Down Syndrome Victoria won the Excellence in Improving Education Outcomes Award for their Inclusion Support Service - congratulations!

Ian Cook and Kade Rayson-Bradbury

This year’s field was exemplary, with many committed recipients whose work has helped improve the lives of Australians with disability and their families,” Senator Fifield said.  

Down Syndrome Victoria’s commitment to helping students with disability get the support they need at school really stood out. 

Since its inception in 2006, the Inclusion Support Service has provided schools and teachers across Victoria with the resources and skills to help meet the individual needs of children with Down syndrome. 

The Inclusion Support Service is an outstanding model for inclusive mainstream education practice, and has helped parents across Victoria access the right school environment for their child. 

I commend Down Syndrome Victoria for this fantastic initiative, which has achieved real and long-lasting change for students with disability in Victoria, and congratulate them on their award.

Senator Mitch Fifield on the Excellence in Improving Education Outcomes Award, 2013 

The DSISS is the only visiting teacher and consultancy service available to children with Down syndrome. It aims to ensure students with Down syndrome reach their full potential by providing practical, hands on support, resources and skills to teachers and support staff responsible for meeting their needs. 

Many families have been fortunate to have the vast expertise of DSV's Victorian Educator Ian Cook in assisting their child navigate their way through the school years. 

All of us at DSV are incredibly proud of this nomination and wish Ian all the best of luck.

Down Syndrome Victoria, 26th November 2013 

Outstanding achievements recognised at National Disability Awards

Twelve individuals and organisations were recognised for their outstanding work to improve the lives of people with disability at this year’s National Disability Awards.

Assistant Minister for Social Services, Senator Mitch Fifield, congratulated the winners at a ceremony at Parliament House.

“This year’s field was exemplary, with many committed recipients whose work has helped improve the lives of Australians with disability and their families,” Senator Fifield said.

“Congratulations to the award recipients and all of the finalists who were recognised for the outstanding contributions they make to our community.”

Minister Fifield said the awards had been impressive this year, with more than 200 nominations received across the nine categories.

“This year we have seen people who have dedicated more than 30 years to supporting people with disabilities,” Minister Fifield said.

“We awarded emerging leaders who are pioneering attitude change both domestically and internationally.

“These individuals and businesses exemplify the benefits to all of helping people with disability take part in all aspects of social, economic and community life.”

Media outlets were also recognised for their significant contribution through the Yooralla Media Award of Distinction.

“I’d particularly like to congratulate the winner of the Prime Minister’s Award for Outstanding Achievement, the late Lesley Hall. Lesley was an outstanding leader, a formidable advocate for people with disability, a strong advocate for the NDIS and a member of two of the expert groups set up to guide its development.”

The National Disability Awards form an important part of the Australian Government’s celebration of the United Nations’ International Day of People with Disability.

• Complete list of 2013  awards

'Tuesday Chatter' on Facebook - join in

From today, the Down Syndrome NSW Facebook page is hosting a regular feature, Tuesday Chatter:

Welcome to chatter Tuesday. Each week we will be posting a question to engage our community and open up discussion. Following on from our last post we would be interested in hearing when your loved one with Down Syndrome was diagnosed and if you were happy with how the news was presented to you.

'Like' the page to join in.

R-E-S-P-E-C-T-E

The R-E-S-P-E-C-T-E campaign was featured in the
 Sunday Mail last weekend

In response to the recent controversy over a disrespectful T shirt designed and sold in South Australia  (now resolved with its withdrawal from sale), a group of advocates has launched a campaign to promote an alternative -  'Respecte for all people, regardless of disability, race, gender, sexuality or age.'

T shirts and caps featuring the word 'Respecte' are for sale online, and purchasers are invited to submit photos of people wearing them in their everyday lives.

• Respecte website

• Respecte on Facebook 

Congratulations to Sam Paior and her friends in Adelaide.

People with Down syndrome in the media

Don't dis Jacqui's ability

Caleb Taylor, The Daily Advertiser (Wagga Wagga) 19th November 2013
If there is any message Jacqui Meyers wants to get across to the wider community it's don't judge me on my disability.
And Mrs Meyers will do just that after getting hand-picked as an ambassador for this year's Don't Dis My Ability campaign, spreading the message that disabled people can live full happy lives despite facing a set of challenges separate to their able-bodied counterparts.
"I always give everything a go," Mrs Meyers, who lives with Down syndrome, said yesterday ...

Essex county fire and rescue: partnership runner-up

Kate Murray, The Guardian, 13th November 2013

... Some of the youngsters have built on the skills they learned by gaining Duke of Edinburgh awards, while others have used the course as a springboard to get jobs, volunteering roles or training places ...

'Condiment specialist' honored at Bellingham Red Robin

Micelle Nolan, Bellingham Herald, 12th November 2013
Steve Jacobson's life is all about making connections with people ...


Meet our new VATTA members – Jessie and Will!

Jessica Huggett

VATTA, 7th November 2013

Jessica Huggett and Will Brewer introduce themselves via the Voices at the Table (VATTA) blog.

Jessica was also interviewed by CBC Radio in Ottawa. She was joined by Melissa Struthers of DSANCR / ASDRCN. Listen to the discussion here. Audio file (6m 21s)

Lights, Camera, PersonalityRemy Sisk, The Voice-Tribune, 14th| November 14, 2013
... Twenty-one year old David DeSanctis is a Louisville native with Down Syndrome who plays a grocery store employee nicknamed “Produce” in the film. Befriended by Calvin, the alcoholic baseball player protagonist, Produce unexpectedly helps turn the athlete’s life around ...

Posthumous Gold Duke of Edinburgh AwardChris and Chris Morris, Down's Syndrome Association (London), 20th November 2013
...  Jason’s two and a half years in the Army Cadets made a man of him. He became more independent and was encompassed by his comrades. As he needed visual prompts for theory, we made a series of illustrated and laminated flash cards at home. The Sergeant decided that he would have an inclusive policy for Jason and that all the cadets would learn with flash cards. Whenever ‘Top Brass’ came for parade inspection, some of the cadets gathered around Jason to adjust his uniform and straighten his beret. Despite Jason’s fatigue and learning style, he radiated warmth and humour which endeared the cadets to him ...

Fantastic five go for gold at Asia-Pacific Games

Port Macquarie News, 20th November 2013

Five Port Macquarie locals will represent Australia next week at the inaugural Special Olympics Asia-Pacific Games to be hosted at Hunter Stadium in Newcastle. Tenpin bowlers Adam Smith, Glen Ball and Ryan Mueller will join cricket team manager Ken Brown and athletics head coach and former Paralympian, Rod Nugent, in a bid to bring gold home to the Hastings ...

"You have to pass a lot of tests in life but you shouldn't have to pass one to be born." Karen Gaffney.

Jennifer Bekins' 2013 gift recommendations

The first link is a re-post from last weekend's reading list in case you missed it, and Christmas shopping is closing in and you'd like some advice:

2013 Gift List is here!!!

Jennifer Bekins, Talk - Down Syndrome, 18th November 2013
... spending time together – interacting and playing - are more important than anything on this list. None of these items were developed for children with DS. There is nothing magical in a product; even the ones I’ve listed for you. The magic is in relationship ...

2013 Gift List #2
Jennifer Bekins, Talk - Down Syndrome, 22nd November 2013

... for infants, toddlers and pre-schoolers

Weekend reading and viewing: 23rd - 24th November 2013

My Response to Ellen Stumbo’s “7 Ways to Help a Special Needs Family”

Jisun Lee, Kimchi Latkes, 15th November 2013
.. There are some things that Ellen Stumbo writes with which I very much agree ... This article by Ellen Stumbo, however, about ways to help special needs families, makes me deeply uncomfortable. She starts by asserting that “we are no different than you”, but then goes on (to) manufacture a host of differences under the “special needs” umbrella ...

Best-selling writer rights R-word wrong

USA Today (news video), 16th November 2013
A Maine mom who blogs about the triumphs and tribulations of raising a young son with Down syndrome took best-selling author and New York Times columnist Chuck Klosterman to task for using the R-word ...

I Am the Author of the Open Letter to Chuck Klosterman Regarding the R-word

Kari Wagner Peck, Huffington Post (Good News), 21st November 2013

... At the risk of sounding trite, Mr. Klosterman is who we have been waiting for. People with intellectual disabilities and their families and friends and allies have been waiting for someone of his stature and character to come to the fore ... It would have been easy for him to counter my question with the ever-popular rant-against-political-correctness ...

It's Never "Just A..."Jen Logan, Down Wit Dat, 19th November 2013
It never ceases to amaze me how many feel that this is actually open for discussion.
I, and countless other advocates for the Intellectually Disabled (including self-advocates) hear "it's just a..." in regards to each new thing that crops up, each new use of the word "retarded". It's just a word. It's just a lipstick. It's just a shirt ...

My Place in This Conversation
Alison Piepmeier, The Feminist Wire, 19th November 2013
... It’s notable to me that intellectual disability is sometimes left out of these conversations—feminist conversations as well as disability studies conversations. I suspect this is in part because people with intellectual disabilities don’t often write their own memoirs or analyses. ...Because people with Down syndrome aren’t attending the conferences, writing in the academic journals, or heading up activist efforts, they’re often ignored—not with hostility, but with a subconscious invoking of what Peggy McIntosh calls “the myth of meritocracy.” There’s a way in which other issues related to disability—mobility issues, Deafness, blindness, the “freak” show—are seen as more important, and perhaps as more easily addressed ...

2013 Gift List is here!!!

Jennifer Bekins, Talk - Down Syndrome, 18th November 2013
... spending time together – interacting and playing - are more important than anything on this list. None of these items were developed for children with DS. There is nothing magical in a product; even the ones I’ve listed for you. The magic is in relationship ...

I Had Critics When I Adopted a Son With Down Syndrome, But My Daughter Wasn't One of Them
Lisa Eicher, Huff Post Parents, 21st November 2013
When my husband and I announced to family and friends our decision to adopt our son, a 7-year-old boy with Down syndrome in Bulgaria, the news was not met with open arms. I knew that there would be a lot of skeptics, which is why we waited until we were pretty far along in the process to tell anyone. But I did not anticipate the pushback we were about to receive ...

iPad master class: February 2014 (Spectronics)

These events are three months away, but you might want to book, and/or alert you child's teachers/ your teaching colleagues to them now, before the long summer break - they are likely to book up quickly:

• Detailed flyer and registration links

This hands-on iPad MasterClass will provide an in-depth opportunity to explore, and create, individualised strategies and support tools proven to be effective in supporting students who are struggling with literacy in secondary school and in post-secondary settings. This is your chance to get down and play in the "iPad Sandpit", expertly guided by experienced presenters. It will be suitable for educators, therapists and parents supporting struggling students in the older age group.

2013 Patron's Welcome Message

International Day of People with Disability Patron Ron McCallum shares his thoughts on what people can do build a level playing field for all Australians: click here for video (1m 40s)

Library Thursday: 21st November 2013

Reading About Me! Teaching reading to visual learners
2013 has been a big year for discussion about and resources for teaching people with Down syndrome to read.  This is a new program from a long-respected teacher and writer in the field:

Reading About Me! was developed by the Down Syndrome Association of Southern Oregon Patricia Oelwein, author of Teaching Reading to Children with Down Syndrome and co-author of Literacy Skill Development for Students with Special Learning Needs: A Strength-Based Approach, in order to provide individuals who have not typically been successful readers in school a chance to show that many can successfully learn to read.





A new edition to look out for
The very popular Gross Motor Skills for Children with Down Syndrome: A Guide for Parents and Professionals, by Patricia Winders is being re-edited, for an expected December release by Woodbine House.

Note to Australian readers: Although Woodbine House does not accept online orders from Australia, they are releasing many of their titles as e-books, as well as in print, and print editions of their titles are readily available from other booksellers.

Wordless Wednesday

Review of the recent closure of three large residential centres in NSW

Specialist Supported Living Services – Post Implementation Review (PIR) Summary Report: The aim of the PIR is to ensure that lessons are identified to improve the process of the closure of Large Residential Centres (LRCs) and the development of new accommodation services for people with disability. The Large Residential Centre closures reported on here are Peat Island, Lachlan and Grosvenor.

• Read/download the full report here.

Source: NSW Council on Intellectual Disability e-news, November 2013

“Apparently if you demean people with disability in French, then it doesn't count” ...

Last week, a US cosmetic pressure bowed to pressure from advocates to remove from sale a lipstick they had sensitively named 'Celebutard'.  This week it's a T shirt  on sale in Adelaide ... honestly, you could not make this stuff up! This media release from Down Syndrome Australia ends with a very apt quote from Ruth Faragher:

Down Syndrome Australia is calling on clothing companies Globalize and Art of Aztec to finally do the right thing and remove from sale their offensive tee-shirts.

Globalize have defended their tee-shirts and tops emblazoned with the word “Retarde” despite calls for their removal from stores.

“Apparently if you demean people with disability in French, then it doesn't count,” said Down Syndrome Australia CEO Catherine McAlpine.

“Here are some other French words for consideration; 'intimider' and 'petite brute'. A quick translation will tell you they mean the same thing - bully.”

Ms McAlpine says the word is commonly used in Australia to demean and devalue people with an intellectual disability or cognitive impairment, including people with Down syndrome. She said people with Down syndrome and their families find the term offensive and hurtful.

“It is cowardice to suggest that 'Retarde' has no meaning beyond the literal translation. It is covert bullying of the worst kind to pretend that this is just another fashion statement. People with intellectual disability, including people with Down syndrome, deserve much better,” she said.

“We have consigned many derogatory terms to the rubbish bin of history – but for some reason we have been slow to do so with this word,” she said. “Time to start now.”

As Ruth Faragher, a rather chic young lady with Down syndrome says; “No friends of mine would even think of buying this rubbish. I think the t-shirts are bloody awful, if you'll excuse my French …”


This report of the retailers' and designers' response to a protest in Adelaide today indicates that we have some way to go:

• Fashion label angers disabled,  Caroline Winter, PM (ABC radio), 18th November 2013
• Petition: Globalize: Stop selling demeaning "retarde" t-shirts
• 19/11/2013 (5.00 pm) - the Globalise Facebook page says 'We believe we have sold out, but to be clear we have told our stores to remove any remaining units of the ‘Retarde’ Tank off the shop floor. We have also asked the designers to take any remaining units back, however they are refusing to do so.' Disability Discrimination Commissioner Graeme Innes spoke with the business owner today.
• Globalize clothing chain takes remaining few 'retarde' shirts off shelves following public outrage, Lauren Novak, The (Adelaide) Advertiser, 19th november 2013

Update: web page about Northcott school holiday camps

• If you were interested by last week's post about January holiday camps for children with intellectual disabilities, you can now visit Northcott's School Holiday Camps web page for further information.

Australian case studies required ...

... for a report: "Disadvantages and discrimination faced by parents with a disability within the family law system".

Barbara Carter, former Manager of Guardianship and Advocacy at the Office of the Public Advocate (OPA), is preparing a report for OPA on the disadvantages and discrimination that parents with disability face in the family law system and the changes in legislation and practice needed to bring family law into line with the UN Conventions on the Rights of Persons with Disabilities and the Rights of the Child. She is seeking Australian case studies.

Contact Barbara via phone: 03 9878 0046 or 0430 453 101 or email.

Source: NSW Council on Intellectual Disability e-news, November 2013

Easy English: Equality, Capacity and Disability in Commonwealth Laws

The Australian Law Reform Commission is looking at laws that treat people with a disability unfairly.

This Issues Paper (IP 44) talks about the problems we have learned about so far. It also has some questions. We would like people with a disability to answer the questions so we can learn more about any problems you have with the law. We would also like to hear your ideas about how to make the law fairer.

This Issues Paper is written in Easy English. We use simple words and pictures to show ideas.

The full version of this Issues Paper, and the Easy English version are both available here.

Submissions can be made online.

Submissions close on Monday 16 December 2013.

• ALRC media release, 15th November 2013
• ALRC e-news about this enquiry, 15th November 2013

Weekend reading, viewing and listening: 16th - 17th November 2013

Our kids in the media

Bloom, 9th November 2013
... It's phenomenal that this little guy is on the cover of the magazine, but why couldn't he be included as simply part of the vast "kid" landscape, which he is, rather than being "identified" as having a syndrome? Why couldn't he just be Hudson, with a descriptor about his personality or what he likes? ...

Down Syndrome Healthcare

Katharin Czink, Medical Watch - WGN.TV, 8th November 2013 (2m 50s video)
A brief opportunity to see Dr Brian Chicoine, medical director of the Adult Down Syndrome Centre in Chicago, at work with some of the 5,500 people with Down syndrome who have consulted the clinic.

Petra's Poem
Animation/performance of a poem written by a woman who has Down syndrome.

Dr. Dennis McGuire Joins Global Down Syndrome Foundation To Help Establish a Center of Excellence for Adult Care and Health Related Programs

Global Down Syndrome Foundation, 13th November 2013
The Global Down Syndrome Foundation (“Global”)  - based in Denver, Colorado - has hired Down syndrome behavioral expert Dennis McGuire, Ph.D., to help establish a world-class medical care and research center for adults with Down syndrome under the umbrella of the Linda Crnic Institute for Down Syndrome ...

When expectant moms learn more about prenatal testing, what do they choose?

Mark Leach, Down Syndrome Prenatal Testing, 14th November 2013
... At the Madigan Army Medical Center, genetic counselors conducted a study of over 400 patients. About 75% of the participants received individual counseling and 25% participated in group counseling sessions. Here’s what the counselors found ...

Kids and emotions

Kate Strohm, Siblings Australia, 31st October 2013

... it can be very difficult to talk about the feelings and often parents will try to hide their own feelings of grief, anger and guilt in order to protect their children – both the one with a disability and those without ...

Hiding behind niceness
Leah Hobson, Ramp Up, 15th November 2013
... "Sometimes," I said, swinging my legs and looking at the sky, "people tell me how they could almost forget that I'm disabled."

My friend smiled the way she does when something is funny even though it really isn't. "I know what you mean," she said. "It's like when people tell me they could almost forget that I'm Asian." ...

Lou, my name is Lou
A music video featuring a boy with a disability (autism spectrum). Sung in French with subtitles in both French and English.

Read more here: http://www.heraldonline.com/2013/11/13/5402079/dr-dennis-mcguire-joins-global.html#storylink=cp

Read more here: http://www.heraldonline.com/2013/11/13/5402079/dr-dennis-mcguire-joins-global.html#storylink=c

Northcott January school holiday camp

Northcott Children’s Recreation are looking for referrals for children and teenagers in school years Upper Primary (4-6) and Junior High (7-9) who have a primary intellectual disability to participate in a camp during the January school holidays.

Visit Northcott's School Holiday Camps web page for more details.

For more information please contact Keira Aitkenhead via email here.

Source: NSW Council on Intellectual Disability e-news, November 2013

News and Commentary on the NDIS (10)

The NDIS in practice - Hobart dad John gives his report card

Ryk Goddard, ABC Radio Hobart, 5th November 2013
John is a widower and father of three kids aged 15 - 19. His two eldest have intellectual disabilities. Has the NDIS made his life better? What about the life of his 15 year old daughter who has no disability but has huge responsibilities? Audio file.

Anglicare report confirms that disability support programs must take into account the needs of carers and families

Carers Australia, 7th November 2013
Carers Australia welcomes the report released by Anglicare yesterday on Caring for a Child with an Intellectual Disability and Challenging Behaviours. The report dramatically highlights the strain on families caring for such children ... Although I was most impressed with the services that were being provided to the first intake of NDIA clients, it was clear that if, as a carer, I asked for respite to be made available I would need to seek supports outside of the agency. While such assistance to families can be sought under the NDIS, carers need to learn a special language to have their request considered ...

Fifield demands action on disability

Patricia Karvelas and Rick Martin, The Australian, 11th November 2013
The Abbott government has ordered the National Disability Insurance Agency to overhaul its processes and provide immediate "remedial action" because the flagship disability insurance scheme is running late. This is despite concern that the most vulnerable - those with intellectual disabilities - are being railroaded into accepting decisions that are not right for them and, in some cases, left to negotiate without independent advocates present ...

Newman slams five years of 'reckless' Labor spending

Brendan Trenbath, AM (ABC Radio), 12th November 2013
... The senior executive who chairs Prime Minister Tony Abbott's Business Advisory Council has condemned the economic management of the Rudd and Gillard Labor governments, accusing them of five years of "reckless" spending... In a speech to the business community in Sydney last night he also singled out Labor's multi-billion dollar commitment to its "better schools" plan and the National Disability Insurance Scheme ...
EveryAustralian Counts comment 12/11/2013 (FB):
The NDIS is not a "cause". It is a social and economic policy reform that will enable people with disability to get out into the community and into work. It is investment, not charity.
(PriceWaterhouse Coopers) report found that the cost on not implementing the NDIS would be greater over the next twenty years than actually funding the scheme.

NDIS good for economy: disability advocate
AAP/The Australian, 15th November 2013
A leading advocate for the national disability insurance scheme has warned that it would be financially and politically reckless to scale back the program ...

NDIS amendment move to protect from religious organisations

Miles Heffernan, Star Observer, 12th November 12, 2013

Alex Greenwich, the independent member for Sydney, will move an amendment to the NSW Government’s NDIS Enabling Bill to protect gay, lesbian, and transgender people with a disability and disability workers who are gay, lesbian or transgender ... Religiously affiliated disability care providers are exempt from the NSW Anti-Discrimination Act, meaning they can deny service to or unfairly treat a gay, lesbian, or transgender person with a disability or fire a disability worker who is gay, lesbian, or transgender ...

National Disability Insurance Scheme Community Forum
The first NDIS webinar, Choice and Control was held on Wednesday 6 November.

Next webinar will be held on Tuesday 10 December, the theme will be in keeping with International Day of People with Disability.

NDIS Community Forums are scheduled for the following Hunter (NSW) locations:

Belmont Tuesday 26 November 

Broadmeadow Wednesday 27 November 

East Maitland  Thursday 28 November

• Check the Upcoming Events page of NDIS website for times and venue details.

Library Thursday: 14th November 2013

Shifting Perspectives

We now have this fantastic book in our library. It is a companion to the Shifting Perspectives exhibition. 

Shifting Perspectives has become a global art and awareness project which has reached tens of thousands of people. The exhibition has travelled throughout the UK and Ireland. It has visited 4 continents and 7 different countries. 

The work - all taken by photographers with a connection to someone with Down syndrome - has gained recognition for its contribution to the field of photography, and its success in challenging attitudes towards people with Down syndrome. 

• Shifting Perspectives website

Currently in the Down Syndrome NSW Library ...

In the latter half of 2013, work will commence on the development of a comprehensive, industry standard catalogue of the library and archival holdings. We are the custodians of significant collection of Down syndrome specific texts, in a variety of formats, collected over a thirty-year period. 

The library preserves the history of the organisation and is developing an appropriate archive, its development and care is an ongoing project. 

Down Syndrome NSW Annual Report, 2012 - 2013

Wordless Wednesday

People with Down syndrome in the media

See the discussion on our Facebook page today about the people with Down syndrome in our lives - you might care to comment too ... your stories and photos are welcome here too (blogeditor@dsansw.org.au):

After months of busking to raise funds, New Zealand couple wed in Cardboard Cathedral
Rachel Young, The Sydney Morning Herald, 11th November 2013After a five-year engagement and months of busking to raise funds, a New Zealand couple have become the first to be wed in Christchurch's Transitional Cathedral.

Jill Jefferies and James Dobinson, who both have Down syndrome, married on Saturday before about 100 well-wishers, family and friends. The couple had busked at the Lyttelton Farmers Market to raise money for the wedding, with Dobinson playing keyboard while Jefferies danced.

Their wedding was the first in the cardboard structure since its opening in August. The Transitional (Cardboard) Cathedral was erected after Christ Church Cathedral in Cathedral Square was badly damaged in the 2011 quake ...

Meet Lucy

Special Olympics Australia/Bus Stop Films, November 2013
Meet Lucy, who will compete in Swimming - Aquatics for Team Australia at the Special Olympics 2013 Asia Pacific Games. Lucy loves swimming ... 


Savannah Guthrie: I'm Inspired by my uncle with Down syndrome
Eun Kyung Kim, (USA) Today News, 11th November 2013
... Savannah said Pierce and his “emotionally wise and sensitive” nature helped the family through their difficult transition ... 'When you love somebody who has a disability, and you experience how they experience the world, it's instant perspective about how to make life wonderful even when you've been given incredible difficulties' ...

Another award for 'The Interviewer'
Bus Stop Films short film The Interviewer continues to impress both judges and audiences in film festivals around the world. Check their photos to see who worked on and in the film. This news was on their Facebook page on Sunday 10th November:

CONGRATULATIONS BUSSTOPPERS! We have WON Audience choice award and Best of Fest at Route 66 International Film Festival. Congratulations. Did you know this now brings our total victory up to a whopping 17 awards!

New from NSW Ageing, Disability and Home Care (ADHC)

Strengthening supports for children and families 0-8 years
Ageing, Disability and Home Care (ADHC) is changing the way it supports children with disability and their families.

Through a series of reforms, children with disability aged 0-8 years and their families will receive supports that address their needs in a stronger and more integrated way.

... details here 


Accommodation support options resource now available in Easy Read and translated versions
People with an intellectual disability will now find it easier to participate in discussions about their accommodation support needs with the publication of the Accommodation support options booklet in Easy Read format and six translated languages.
... details here

Down Syndrome Australia joins call for the abolition of the Business Services Wage Assessment Tool

News from Down Syndrome Australia:

Down Syndrome Australia has joined with other national peak consumer and advocacy

organisations, including the National Council on Intellectual Disability and the Australian Federation of Disability Organisations, to call for the abolition of the Business Services Wage Assessment Tool (BSWAT).  

The joint Our Line in the Sand submission to the Australian Human Rights Commission calls for the BSWAT to be immediately replaced by the much fairer Supported Wage System across all work settings.

Key Word Sign workshop at support group meeting: Green valley

'My Time' Down Syndrome Morning Tea Support Group will be having a fun morning learning Key Word Sign Language with Aileen Ryan from Hands Can Talk.

Image: Dreamstime

The workshop is designed for parents of children aged 0 - 6 yrs who have Down syndrome.

There is no cost to attend the workshop.

10.00 am to 1.00 pm Friday, 29 November 2013
Share Care Support Centre

26 Greenvalley Road, Busby 

(in the Liverpool area)

RSVP and enquiries: Melissa Cotterill on 9825 1973 or 0418 162 544 or mmcotterill@bigpond.com

Forum on 'Ageing with a disability and the NDIS' - Bankstown

Futures Alliance and the Australian Association of Gerontology forum, in association with the Don't DIS My ABILITY campaign:

Implicit in the rollout of the National Disability Insurance Scheme, as well the current Aged Care reforms, is the promise of better outcomes for people with disability who are ageing.

Hear about the current policy landscape and  the latest research, and join us in a conversation to help shape the future for people with a disability who are ageing.

Guest speakers will include leading influencers and decision makers including Emeritus Professor Trevor Parmenter, among others.

Visit the AAG website for details about the speakers, and online registration.

• Download the fiier and registration form here.

Weekend reading and viewing: 9th - 10th November 2013

A father's tale of true love
Bill Gray, Down Syndrome-Autism Connection, 1st November 2013
... I am amazed by the number of people who say "You and Charlotte are just AMAZING! I could never do what you do!" To be honest, I have a couple of secrets to share with you: Firstly - Yes, you can ...

We are not your token humans

Ginger Stickney, Green tea Ginger Bliss, 30th October 2013
... It's a form of "Othering" at its worst. It strips these people of their humanity. No matter what one's intentions, the end result is that a person becomes in the eyes of others not real. Not complicated. Not really quite human. I'm here to say loudly: I am not your token female. My husband is not your token Mexican friend. My daughter is not your token "Down's kid."

23 Ways To Communicate With A Non-Verbal Child

Emma Sterland , Friendship Circle, 16th April 2013

“Just because a person can’t speak doesn’t mean they have nothing to say.” A very important reminder from a parent of a non-verbal child ...

I got a big love/hate on ...

Happy Soul Project, 30th October 2013
I have a love/hate, okay mostly hate relationship with Pip's therapy stuff...I love that it is available & we are being proactive instead of reactive...I love that the people involved seemed to actual care about Pip's progress & are helpful & supportive...I love that we really have seen her develop the last few months- almost as if catching up from the slow start she had at the beginning...

Disability shouldn't be such a big deal
Danny Dickson Ramp Up 8th November 2013

Danny Dickson is a Year 9 student with disability. He is passionate about inclusive education and knows first-hand the positive impact of a truly diverse school culture ...

Position vacant: Executive Director, DS NSW

Applications are invited for the newly created position of Executive Director at Down Syndrome NSW. This is a part time position.

For further information and job description click here.

Applications close on 15 November 2013

Contact: Scott Bridges via email only: scott.bridges@dsansw.org.au

Down Syndrome NSW Annual Report 2013

The Down Syndrome NSW 2012 - 2013 Annual Report can be downloaded from here.

The 2012 - 2013 Treasurer's Report can be downloaded from here.

Estate Planning Workshop: Dubbo

Down Syndrome NSW will be holding this popular and informative seminar in Dubbo on Monday 18 November. 

The presenter will be Jonathan Harris from Sydney legal firm Harris Freidman Lawyers.

Topics covered will include

• Guardianship
• Powers of Attorney
• Testamentary and Special Disability Trusts

6.00 - 8.00 pm, Monday 18 November, 2013
Dubbo RSL Club
$16.50 members $33 non-members

Bookings: events@dsansw.org.au

DS NSW workshops 2014: what do you need?

Down Syndrome NSW is finalising its workshop planning for 2014 and would value members' input.       Would you please click here to link to our online survey -  it will take less than 2 minutes to complete.  © Photopal604 | Dreamstime.com Should you have any questions please contact Catherine Pedler T:  9841 4444 | F:  9841 4400 | E: catherine.pedler@dsansw.org.au Thank you for taking the time to complete the survey.  The information gathered will help to ensure we are providing the most relevant information sessions for our members.

Good health: Transitions, fear and anxiety

We often talk about supporting children with Down syndrome to move from one activity to another, resources that will help them to know when the time for one activity is up, and it is time to move on, get through the school day or to manage when routines are interrupted.  Similar advice is also important for supporting many adults with Down syndrome - transitions and change are often challenging throughout life.  This recent blog post from the Adult Down Syndrome Clinic in Chicago addresses the support that some adults might need.

Transitions, fear and anxiety
Adult Down Syndrome Clinic, 3rd November 2103

“Life would be simpler if we could counter the fear of change just by telling people, ‘Change is inevitable, get used to it”. Conquering Fear: Living Boldly in an Uncertain World by Harold Kushner

... We know that many people with Down syndrome find transitions problematic and even fearful. It seems that all of the above reasons and other reasons, too can contribute to a difficult transition. Not knowing what is next, where they are going, or what to expect seems to be particularly problematic for many of our patients when it comes to dealing with transitions ...

The book, Mental Wellness for Adults with Down Syndrome is available for loan to members from the Down Syndrome NSW library.

People with Down syndrome in the media

People with a disability deserve the same rights as everyone

Petula Dvorak, Washington Post Local, 25th October 2013
I met a woman this week who may be the leader of our nation’s next big civil rights movement.
Barely 5 feet tall in a regal red jacket, Jenny Hatch commanded the room at American University’s School of Law when she asked: “How do we make sure a person’s rights are not taken away, like mine were?”

Advocating in Your Community

Janet Charchuk and Matthew MacNeil, VATTA, 29th October 2013

... I met with (Community Inclusion) and some government people to tell them about the need for affordable and supportive housing. They did a study on aging parents and with that data and advocates like me…the government listened!
... Everyone wants to have a group of friends to hang out with. It is hard when your friends invite you to go out to a sporting event or some other fun activity, but you have to say no because you have no way of getting there. Having transportation helps us be independent adults. Many self-advocates want and have jobs. Public transportation helps us get to work. This is important to be independent ...

Arvada restaurant employs 40 developmentally disabled adults
John Meyer, The Denver Post, 27th October 2013
Kira Witt is very precise when explaining how she does her favorite job at Jack's Bar & Grill, making sweet- and-sour mix for margaritas with freshly squeezed juices. She describes each step in the process slowly and deliberately — her halting speech the result of a developmental disability — but the pride and enthusiasm she has for her job is evident, both in her demeanor and her attention to detail ..

Fairy-tale finish

Chuck Culpepper, Sports Earth, 28th October 2013

... Would John Southworth finish his 8K when he'd spent all of college at 5K and only lately 6K? ... Would this 24-year-old man with Down's Syndrome, in his debut in the men's race rather than a separate provisional, help his five-man team cobble together the five finishers required to score points?

First runner with Down syndrome finishes NYC marathon Video (3.03)
(US) Today, 4th November 2013
He crossed the finish line hours after the winners, but Jimmy Jenson still set a record at the ING New York City Marathon on Sunday: He's the first person with Down syndrome to complete the race.

Down syndrome doesn't stop artist from painting

JaNae Francis, Standard-Examiner, 28th October 2013
... Peggy LeAnn Tyler ... is the winner of many blue ribbons from the Weber County Fair. The story seems no different from those of other talented artists. Until you realize Peggy has Down syndrome ...

Don't Dis MyAbility 2: Made You Look

Made You Look is the official magazine of the Don't DIS my ABILITY campaign. 

This year's Made You Look shines a spotlight on the themes of living, learning and travelling in the community. Read about how London delivered the most accessible Olympic and Paralympic games ever, learn about how a rock icon is helping kids with disability to discover the magic of music, and discover who inspires some of the most influential people in Australia’s disability sector. 

For the first time this year, Made You Look is available in a tablet-optimised edition, as well as PDF and RTF formats - download the one you prefer from the Don't DIS my ABILITY website

Don't Dis MyAbility 1: Ambassadors 2013 announced

International Day of People with Disability (IDPWD) is celebrated annually in NSW with the Don't DIS my ABILITY campaign. The campaign celebrates the diversity and ability of people with a disability. It is about promoting positive perceptions and building an environment that encourages active participation in careers, leisure pursuits as well as social activities.

International Day of People with Disability (IDPWD) is designated by the United Nations as a time to celebrate and recognise the achievements, contributions and abilities of people with disability and is celebrated on 3 December each year.

Congratulations to the nineteen 2013 ambassadors who have been selected from the arts, sports and business fields to spread the Don't DIS my ABILITY message throughout NSW and beyond. Among them, is Jacqui Meyers, an artist from Wagga Wagga. You can read a little about each of them here - Jacqui's bio:

Jacqui Meyers is a multidisciplinary artist who lives in Wagga Wagga with her husband Kane and Barney her Jack Russell dog. Jacqui and Kane married in 2007, having been childhood sweethearts since kindergarten. Her talent in the arts extends to painting, drawing, textiles, paper craft and performing. She is currently part of an exhibition at Wagga Wagga Art Gallery called 8 Artists, which is a project that saw emerging and established artists with and without disability collaborating together. Jacqui has also played leading roles in the All Abilities Theatre Company and has starred in the short film Love Ability. Jacqui has Down syndrome.

• Don't DIS my ABILITY website 

'Daily Exclusives' from Canada

One of the ways that the Canadian Down Syndrome Society is marking its National Down Syndrome Awareness Week is with a series of seven 'daily exclusives' about living with Down syndrome.

Today's posting is the delightful story of two sisters, Mary Frances and Jean, who needed to negotiate a new relationship at the ages of 40 and 60:

Mary Frances informed us that Momma had told her three very important things: continue on just as you always have, not to be too hard on me and give me time to adjust to my new role. Our mother, in her infinite wisdom, had sowed the first seed in our journey.

• Earlier entries can be read here.