Tuesday, 30 September 2014

Step Up 2014



Only two weeks till Sydney Step Up!  

Counting down the days till this years Step Up? Ask your family and friends to join you for a great day.There are four events to choose from:
Sydney - Sunday 19th October 2014
Picton - Sunday 19th October 2014. 
Wagga Wagga - Sunday 26th October 2014
Newcastle - Sunday 23rd November 2014
It’s easy to get involved –
  1. Check out the four different events happening around NSW and decide which is best for you 
  2. Register online HERE 
  3. Invite your friends and family to join in 
  4. Get fundraising
  5. Come on the day, walk and have fun!
Our goal is to raise $50,000 this year and the only way we can do it, is with your help.

So what are you waiting for? Jump online now and become a part of our team!

We're also still looking for more volunteers, so if you have any family and friends who aren't walking but would like to help out on the day, email us at stepup@dsansw.org.au

People with Down syndrome in the media

Kimba Wall to feature in a book about the families of children with Down syndrome
Jesse Wray-McCann, Mordialloc Chelsea Leader, 23rd September 2014
When Kimba Wall was born with Down syndrome, the doctor told her parents to take her home, but not expect much from her. Twenty-five years later, the Chelsea woman’s story is being used to inspire and encourage other families with newborns diagnosed with Down syndrome...

Sarah Horgan, Evening Echo, 22nd September 2014
A teen with Down Syndrome hopes to see his name in bright lights after landing a major film role.
Harry Nagle from Ballyfeard near Kinsale vowed to become a movie star, like his idol John Travolta, after joining CADA Performing Arts as a child ...


Photographer with Down's syndrome 'sees the world differently'
Kate Monaghan, BBC News Magazine, 9th September 2014
Photographer Oliver Hellowell has Down's syndrome, which his mother says means he sees the world differently from most people. Oliver's unique way of capturing the natural world has recently gained him a lot of fans ...

Qantas flight attendants break into song to surprise Glee actress Lauren Potter
Robyn Ironside, News.com,  19th September 2014
QANTAS flight attendants have turned the tables on one of the stars of hit television show Glee, delivering a pitch perfect welcome to Australia for Lauren Potter. The actress who plays Beth in the series, landed in Australia on Wednesday ahead of this weekend’s e.motion21 Annual Dance Spectacular in Melbourne.


How editors and journalists can produce better and fairer reporting on people with disability
Shawn Burns, World News Publishing Focus, 8th September 2014
Partnerships between advocacy groups and the mainstream media are a hallmark of the rise of Advocacy Journalism as a conduit for meaningful social change. And some of the most prominent collaborations seeking to facilitate self-representation for minorities have involved people with disability (PWD). However, as Shawn Burns reports, there's still much work for editors and journalists to do in this area.

Monday, 29 September 2014

Trivia Night success - thank you

We had an impressive turnout of 180 people at our Trivia Night at Five Dock RSL on 30th August. It was a lively mix of members, their friends and families, staff, board members and a strong representation of Up Clubbers.

A great night was had by all with the winners taking home an impressive prize pack that included; hand made cards by Bridget Parker, wine, and a gift voucher. There were prizes for second and third place too. There was a special prize given to the most valued player on the losing table, won by DS NSW Board member, Jason Lloyd.

We are looking to roll this out across the State, so if you are interested in hosting your own trivia night please get in touch with the Ben Chinnock, our Community Engagement Manager, via ben.chinnock@dsansw.org.au and he will be able to provide you with a 'how to' guide.

The winning team - well done!

Thank you Scrappers!

Scrapheap Adventure 2014 - group photo from Saturday afternoon,
20th September, in Nymboida
See all the photos at Scrapheap Adventure 2014 on Facebook


This is what founder and organiser, Perry Gilsenan had to say immediately after getting back from last weekend's Scrapheap Adventure Ride:

Scrapheap Adventure Ride 2014 was one of our best. A great venue and a great bunch of people raising close to $70,000 for Down Syndrome NSW!!!

There was lots of laughter on arrival and the feedback was everyone had a great ride getting to Nymboida!

Friday night there were 3 different stews and a beef Curry to feed close to 100 people. No complaints and ample available. The big shed was great at meal times.

On Saturday morning Dave Ramsay lead a ride, with a lot of laughs too with the Milan 50cc scooter getting the most air on some of the jumps.

Saturday night was our biggest night ever with about 150 people sitting down together for a good dinner, trophies awarded, charity auction and then the raffle prizes! Looks like we will hit $70,000 in funds raised this year! A Great Effort by one and all.
Best Scrapper - Chris Schneider - Milan 50cc Scooter
Best Engineered Scrapper - Charley Loomis - FZWhy 250
Best Vinduro - Demus Tintner - XT500
Best Sidecar - Dak Dak Dave Kawasaki 750 Sidecar
Most Raised Individual was Andrew Hunter who raised over $6,000, Graeme Girdler $4,136, Mike Case $3,076
Most Raised Teams was Team Inverell who raised over $10,000, closely followed by Toowoomba Scrappers $7,400 then Team DT with $4,075
Longest Distance was Graeme Girdler who rode up from the South Coast, only getting his licence 8 weeks prior. Matty Brumby had come up from Melbourne but only rode from Sydney.
Hard Luck Award went to Adam Wurr, who ran an old IT175, restored over 12 months. His bike broke down about 45 minutes after we left Dural and was shedding parts consistently whilst on the trailer the rest of the way to Nymboida.
Once again a big THANK YOU to all who have attended or supported riders on this year's Scrapheap Adventure Ride.

Best Sidecar - David Scharf,  Kawasaki 750 Sidecar
And thank you, Perry!

Friday, 26 September 2014

Weekend reading and viewing: 27th - 28th September 2014


For Barry Trotz and wife, transition to Washington centers around son with Down syndrome
Alex Pruitt, The Washington Post, 23rd September 2014
... at first it seemed ideal: grassy parks down the block, middle school within biking ... neighboring adults who invited them to an ice cream party and whose daughters knocked on the front door to invite Nolan to play kickball ... But summer soon ended. No more knocking, no more kickball. Then school started, and Nolan’s teacher was great, but a new environment with less individual attention led to acting out in class. At home, Nolan had grown quieter since the family completed its move in late August. Vocalizing his feelings had always been a struggle ...
Maureen Wallace, She Knows, 19th September 2014
... To be clear, I don't expect a ticker tape parade when I introduce my child with Down syndrome to an activity or organization. But I will always expect an equal level of interest that any other child receives — and I will always expect a mindset of willingness to try ...

Mary Evelyn, What Do You Do Dear? 19th September 2014
... She didn’t speak another word and, since making a complete stranger feel guilty/foolish/uncomfortable wasn’t on my “to do” list for the day, I felt terrible. Smooth move, Self ...

The Big Day - Stacey and Ian
Pink Shoe Photography, 19th September 2014
A beautiful, professional portfolio ... While the couple faced their friends and family, the pastor took a moment to appreciate this special couple. He said that all Stacy and Ian wanted was to be married to one another. That it was their dream. He asked everyone to take a moment to appreciate the love in their lives and he encouraged them to hold it tight and dear. Most of all, he requested that they never take marriage for granted ...

Welcome to Italy - Benvenuti in Italia
Linda Smarto, National Association for Down Syndrome Newsletter (via the Adult Down Syndrome Clinic Blog), 17th September 2014
Are you familiar with “Welcome to Holland”? It was written in 1987 by Emily Perl Kingsley. I think it is a wonderful analogy about taking a long awaited trip and having a child with a disability. Although, I will admit, it has always been a little “bitter sweet” for me ...

What not to say
The Diary of a Not So Ordinary Boy, 26th June 2014
Oh, people put their foot in their mouths all the time, so, in the interests of harmony between us, and me not jumping on your head, or down your throat, here is my list of ‘Things What Not To Say To A Parent Of A Child With Learning Difficulties Like, Say, Down Syndrome’ ...

Disabled Children Aren’t Burdens — or Angels
This Ain't Living, 25th September 2014
In popular narratives, disabled children seem to be framed continually as either one of two things. They are either precious angels sent to Earth to teach us all a lesson, or they’re burdens dragging on the lives of their parents and family members, who are forced to make tremendous sacrifices for them. Neither is true, and both are incredibly harmful not just for disabled children, but also for the adults who they grow into ...

On employment

Employment is a hot topic among people with Down syndrome and other intellectual disabilities and those who care for and support them.  The employment experiences of people with Down syndrome in Australia is as varied as in other countries (and it is not always pretty), and continues to evolve:

Ticket to Work
Down Syndrome NSW eUpdate, September 2014 #1
A recent report The Transitions to Employment of Australian Young People with Disability and the Ticket to Work Initiative, notes that “the current transition to employment support systems are largely failing Australian young people with disability and condemning these young people to a marginalised and dependant life with reduced opportunity for social and economic participation”.
The report advocates for all Australian young people with disability to receive access to ‘good transition’ activities, activities generally provided as a matter of course to their non-disabled peers.

New scholarship opens door to hospitality role for people with disability
Natasha Boddy, Sydney Morning Herald, 24th September 2014
Young people with a disability who want to work in hospitality can apply for a new training scholarship under a program available in Canberra ...


Tim Hortons model the tip of the iceberg for hiring people with disabilities
Barbara Turnbull, The Star, 16th December 2014
Clint Sparling loves his job. And since the day Sparling, who has Down syndrome, began work at a Scarborough Tim Hortons nearly 20 years ago, he has been Mark Wafer’s best employee ...

A Hotel Hires And Trains People With Disabilities As Part Of Their Business Plan
San Francisco Globe (SFG), 29th August 2014
It started with a simple idea. Why shouldn't those with disabilities get the same employment opportunities as others? Patu Keshwani and his staff decided to change it ...

Thursday, 25 September 2014

Latest additions to 'events' pages

Other events 2014 - 2015
These links provide information about events run by other organisations that might be of interest to people with Down syndrome, their families, carers and professionals who support them.

Mapping Community Resources
Centre for Disability Studies workshop. Working Together to build social connections. A collaborative workshop for support staff and people with disabilities
Thursday 2nd and  Friday 3rd October 2014 - Lismore

NDIS events, NSW
NDIS Community Information Forum Newcastle Jockey Club, Darling Street, Broadmeadow
Tuesday, 7 October, 10am to 12pm 
Tuesday, 7 October, 10am to 12pm 
NDIS Provider ForumNewcastle Jockey Club, Darling Street, BroadmeadowTuesday, 7 October, 1pm to 3pm 
NDIS Community Information ForumBelmont 16’ Sailing Club,The Parade, BelmontWednesday, 8 October 2014, 10am to 12pm  
NDIS Community Information ForumEast Maitland Bowling Club, Cnr New England & Banks Street, East MaitlandThursday, 9 October 2014, 6.30pm to 8.30pm
  • All details, including RSVP requirements are here, on the NDIS 'Events' web page
Introduction to Person-Centred Facilitation 
Centre for Disability Studies - two day workshop facilitated by Ray Murray. Opportunities will be provided to practice facilitation strategies and action methods suitable for leading groups, delivering training and giving presentations.
Monday 13th and Tuesday 14th October 2014 - University of Sydney

Open Day - Inclusive Education Program, University of Sydney
For people with an intellectual disability who would like to experience university - you can bring a friend or support person if you like.
Tuesday, 14th October 2015 - Camperdown

Taking Action for a Good Life
Family Advocacy workshop - explore why and when you need to speak up for your family member. You will leave with ideas, strategies and a strong framework to undertake advocacy actions in the future.
Tuesday 21st October 2014 - Armidale
Wednesday 22nd October 2014 - Taree
Wednesday 29th October 2014 - Bankstown
Thursday 30th October 2014 - Campbelltown

Developmental Disabilities, Challenging Behaviour and Mental Health:  Research to Practice and Policy
Centre for Disability Policy and Research (University of Sydney) - the latest developments in disability and mental health research and practice will be presented. This conference is intended for researchers and clinical practitioners, and will also benefit those working with people with developmental disabilities in the community.
Friday 7 November 2014 - Sydney

Having a Say Conference 2015
VALID - the 2015 Having a Say Conference invites all delegates to break down the barriers - even the barriers we have built for ourselves. Annual event bringing together self advocates and adults with disabilities from around Australia.
4 - 6th February 2015 - Geelong

Wednesday, 24 September 2014

Advice on supporting early language development

A common question for families everywhere:
When to Start Speech Therapy for Children with Down Syndrome 

Jennifer Bekins, Talk-Down Syndrome, 15th September 2014
... Most children with DS are in preschool or kindergarten when goals for articulation are established. Until then, therapy focuses on the child’s ability to understand and use words and gestures to communicate ...

Good news of baby Gammy, and his family

Earlier this week, Peter Baines, Founder and Chair of  Hands Across the Water, the charity managing the finds donated to support baby Gammy in Thailand, met with Gammy's family, and has written a very heartening post on the Hands Across the Water Facebook page about their progress so far, and plans for future support. T
'... I am confident he is much healthier now and Goy is in a far better position to provide care for him, thanks to the donations of so many generous people around the world ... we anticipate the original donated funds being sufficient to see Gammy into early adulthood ...' 
The post is dated 22nd September 2014, and is accompanied by photos taken during his visit.

Tuesday, 23 September 2014

Further to today's post on advocacy, rights and opinions ...

There is a steady stream of news and commentary related to advocacy and the rights of people with disabilities that are aggregated into occasional entries like that posted earlier today. And then three more articles landed in the inbox this morning - the first two could easily have waited until the next occasional post, but the third one, for which you might need a measure of strength, is a stark reminder that the need for advocacy and the vigorous defence of human rights is not yet done and dusted ... Mardra Sikora's considered response deserves our immediate attention:

Disability Rights Campaigner Nominated for Justice Medal
ProBono Australia News, 23rd September 2014
Former Disability Discrimination Commissioner Graeme Innes AM, now chair of Attitude Foundation, has been nominated for the 2014 Justice Medal ... The Justice Medal will be presented at the 16th annual Justice Awards dinner, hosted by the Law and Justice Foundation of NSW, at Parliament House in Sydney on 29 October 2014.
Disablism Amongst Disabled People
Simon Stevens, Huffington Post UK, 22nd September 2014
Disablism is a relevantly new term that describes a number of deliberate or unconscious actions by individuals or organisations towards disabled people including outright discrimination, less favourable treatment, 'hateful' actions like verbal or physical abuse, and the one I experience the most, the undermining of someone's intelligence or ability to contribute to society including patronising comments and actions.

I think the last component is the one that is least understood but potentially is the most widely used with less obvious and more damaging effects, because it is still very acceptable behaviour ...

According to Jenkins, Best to Keep a Person With Down Syndrome at HomeMardra Sikora, Huffington Post, 22nd September 2014
... The Jenkins' letter insinuates the assertion that mothers like Patti Saylor, who advocate for an inclusive community, who teach and encourage independence for their children of differing abilities, and who have encouraged other parents and educators to do the same -- these mothers are the problem. That allowing our children in public, that's the problem.

No, the problem is not those with developmental disabilities, not with those who may require an extra moment of explanation or guidance. The problem is not and has never been Down syndrome. The problem is closed minds and dare I cliché, closed hearts ...

Advocacy, rights and discrimination: news and opinion

National Disability Forum: survey results
The Acting Disability Discrimination Commissioner, the Hon Susan Ryan AO, announced that the Australian Human Rights Commission would be holding a National Disability Forum. The forum would look to take stock on the status of the enjoyment of human rights by persons with disabilities. The forum would also have a thematic focus on employment related issues (which the outgoing Disability Discrimination Commissioner had identified as a key area of focus for the future).

Ahead of the forum, the Commission conducted a survey to consult with the disability rights’ sector and wider community about the key issues affecting persons with disabilities. The survey results are available here, on the AHRC website

White Guard to Black Student with Down Syndrome: Assume the Position (as a joke)
David Perry, How Did We Get Into This Mess? 4th September 2014
Sometimes I write about Down syndrome and comedy and why I think it's so important. I get the pushback - lighten up, it was only a joke, don't take things so seriously, and so forth. So here's this story ... a prime example of why I am so concerned about how we represent disability, how we make sure we tread people with disabilities as full people, not as objects ... 
Disability Inclusion Legislation passed by NSW Parliament
ADHC,14 Aug 2014
NSW Minister for Disability Services John Ajaka this evening welcomed the passage of the Disability Inclusion Bill through the NSW Parliament, which sets in place a legacy of inclusion and protection for people with disability during and following the transition to the National Disability Insurance Scheme (NDIS). The legislation will replace the Disability Services Act 1993 that has been in place for the past 21 years ... read more here and here (effects of the new Act are detailed in a series of fact sheets)


Govt Cuts Shutdown Disability Advocacy - Innes
ProBono News Australia, 5th August 2014
The Federal Government is effectively trying to shut down an advocacy voice in the disability sector through funding cuts, says former Disability Discrimination Commissioner Graeme Innes. Former Disability Discrimination Commissioner Graeme Innes at the Strengthening Disability Advocacy Conference.

Innes, who made the opening keynote address at the Disability Advocacy Resource Unit’s (DARU) two-day Strengthening Disability Advocacy Conference on Monday in Melbourne, said recent decisions by the Federal Government, particularly the recent Budget, were driven by a philosophical agenda.

He also said that despite the Government knowing the efficiency of systemic advocacy, it had chosen to wind it back ...


Attitude Foundation
Chaired by Graeme Innes, former Disability Discrimination Commissioner
CHANGING ATTITUDES WILL CHANGE LIVES.You can join with us in changing attitudes and changing lives. We are working to give a voice to the 4 million Australians with disability by telling positive stories. Stories that are life changing. 
Attitude was established to tell stories about Australians with disability using video. Attitude is partnering with Attitude Pictures Australia Pty Ltd to develop a documentary series to be screened on ABC television. 
ABOUT USWe work with you to change attitudes to people with disabilities. By changing attitudes, we can change lives. Attitude Foundation Limited was established in 2014 by people who are passionate about the inclusion of people with disabilities in society and are passionate story tellers.

Monday, 22 September 2014

Good health: important advice for summer

The Adult Down Syndrome Clinic has recently posted some advice particularly relevant for people with Down syndrome as we in the southern hemisphere come into summer:

Image: Pixabay.com
  • Eye conditions and sunglasses ... Eye conditions are more common in people with Down syndrome ... Sunglasses may help prevent cataracts and glaucoma
  • Hydration  ... Based on patient interviews, physical exams and review of lab tests, it is clear many of our patients don't drink enough fluids ...
Timely advice for those signing up for Step UP! for Down Syndrome 2014


Carers Day Out in the city: 14th October 2014



Friday, 19 September 2014

Weekend reading and viewing: 20th - 21st September 2014

11-Year-Old Makes Powerful Anti-Bullying Music Video for His Sister With Down Syndrome
Melissa McGlensey, The Mighty, 15th September 2014



... We live in a world where differences are all around us. Sometimes it's easy to get caught up in these differences, especially when we see them in the people that surround us everyday. MattyB believes that everyone deserves the same thing: love. It's not always popular to love someone and embrace their differences, especially when others make fun of them. But being a leader means standing up for what you believe in and choosing to do the right thing... even when it's not always popular ...

When I Found Out My Daughter Had Down Syndrome: What I Wish I Could Take Back
Tara McCallan, The Mighty, 13th September 2014
One thing I wish I could take back when I found out Pip has Down syndrome, is all the tears I cried… sobbed… wept… Yep, “wept” is the right word… over the relationship I thought Noal would have with his sister ...
Pam Mellkog, Times-Call News, 16th September 2014
"Is he handicapped?" the 8-year-old asked.
"Yes, he is," I said, pleasantly surprised by the child's perception and straightforward question.
"Well, you never know with those handicappers, you never know what they're gonna do," he said ...

7 Morning Sensory Tips for You and Your Child with Special Needs

Ilana Danneman, The Friendship Circle, 16th September 2014
... Here are a few tips to get those muscles moving and brain cells working right from the start of the day. These tips are written for your sensory seeking, sensory deprived or sensory sensitive kids, but feel free to try them out on yourself first ...


Flexible working conditions for carers needed to meet ageing challenges
Carers Australia, 17th September 2014
 ... With an ageing population, becoming a carer-friendly workplace makes business sense. Providing flexible and supportive working conditions to enable employees to combine paid work with an unpaid caring role will ensure employers are able to hold onto experienced workers ...

Every Parent is an Advocate
Elly Sheller Rufer, Huffington Post (blog), 11th September 2014
... My goal, like that of most parents, has always been to ensure that my children have access to the best and most appropriate opportunities in life. What I have learned over three decades of working toward this goal is that the supports that are available to the parents of a "special" child differ dramatically from those that exist for a family with a "typically developing" child ...

What acceptance is not
Cynthia Kim, Musings of an Aspie, 17th September 2014
... We’re okay with all of it, just as it is.

How is that not giving up??? you may be wondering. How is that different from doing nothing?!

Because it’s not the finish line. It’s a starting point. From a place of acceptance, we can build coping strategies and learn new skills in a way that improves the quality of our life ...

(Not about Down syndrome, but the thoughts about acceptance are just as relevant).

Accessible Arts Newsletter, September 2014

Annual General Meeting: speaker announced


Carolyn Campbell-McLean  has been announced as the speaker at the 2014 Annual General Meeting of Down Syndrome NSW.

Carolyn is a Senior Facilitator with the My Choice Matters consumer development fund and has extensive experience in state government roles, including at the NSW Ombudsman and Public Guardian. Carolyn has also taught disability studies at TAFE and University of Western Sydney and is dynamic advocate for all people with disability. Carolyn is joining us in her role as an Ambassador for  Living Life My Way to chat about different approaches to individualised funding and self-directed support.

The AGM is a wonderful opportunity to get together with other DS NSW members, to meet the new Board and review the past 12 months of Down Syndrome NSW. If you have any particular questions about the Association’s work over the last year you are welcome to email Matthew Kelly, our President, before the meeting on President@dsansw.org.au and we will endeavour to have a comprehensive answer available for you on the day.

Families are welcome and you are invited to join us for coffee and cake after the meeting:

Sunday 28th September 2014
10:15am for 10:30am start
Information and Cultural Exchange Inc (ICE) 
8 Victoria Rd Parramatta 
(Corner Victoria RD and Vickers St, Parramatta)

RSVP: By Thursday 25 September to admin@dsansw.org.au

Thursday, 18 September 2014

Library Shelf

New Title in the library collection

Educating Children with Down Syndrome: Research, theory and practice with children and adolescents, Rhonda Faragher and Barbara Clarke (eds), Routledge, 2013
While the emphasis is primarily on the school years, links to early intervention and to life post-16 are made, with chapters organized into three parts: conceptual overview of issues in learning and teaching, learning mathematics, and literacy development. 
The book is also united by the cohesive themes of assessment, evidence-based practice, and inclusive practices. 
Educating Learners with Down Syndrome importantly incorporates the voices of individuals with Down syndrome, whose personal narratives add significance to the research mission of the text and demonstrate the authors' inclusive philosophy. 
Aimed at researchers, teacher educators, higher degree students, and policy makers, this book is the first of its kind to provide a compendium of research on educating learners with Down syndrome. (Publisher's note)
Members' library

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


Archiving Project

Our archiving project continues on a weekly basis in the office.

Do you have any old photos from Down Syndrome NSW events that you would like to send to us? Please do so.

Send print material to:  Down Syndrome NSW, PO Box 107, Northmead 2152
or digital material to the library Email: library@dsansw.org.au

Scrapheap Adventure Ride 2014: they're off!

The bags are packed, the fuel tanks are full and the bikes are ready to go (hopefully!) They're setting out today, about 8am from Dural Holiday Park.

Follow along on the Scrapheap Adventure Ride Facebook page.  Here are the first pictures - there will be many more:

Twelve riders set out from Dural this morning
- beautiful day for a ride
Waiting for the Ferry
We have over 70 riders and have so far raised $40K nearly $60K. We have around ten members riding bikes this year and seven of the Up! Clubbers attending the two days camping at Nymbodia.

Those crazy men on their Scrappy machines (their own words - well Perry's!) 

Good luck and safe travels everyone!!

... and here's Part 3 from 2013. It's not all motor bikes ... there's poetry, and music too, and a tremendous amount of fun and good will:



Wednesday, 17 September 2014

Dreaming big - changing lives of young people with intellectual disability


Seventeen young people with intellectual disability were inspired to think about their dream life and work future last Saturday in Sydney.

Hosted by Nathan Basha, of NB* - No Barriers, and led by media personality Anna Crotti, the workshop helped everyone who attended to think about what could be possible for their life and gave them practical skills for their work future. Each person left with a CV and clear goals, setting them on a path to fulfilling careers.

Most young people with intellectual disability do not get the same life opportunities as other young people without disability and this includes employment opportunities.

This workshop was designed to inspire young people to start to think differently and to motivate them and their families and friends to dream big and consider that anything is possible.

NB* wants to take action and get people the jobs they want. Last month Nathan spoke to business leaders at an NAB Call to Action Luncheon where he asked people to consider employing someone with an intellectual disability. Nathan will be following up on this Call to Action and is extending his call to anyone in the corporate sector.

Seventeen people are now inspired and ready to knock on corporate doors demanding jobs. This is just the beginning of a generational change and NB* looks forward to inspiring others and making this change happen. This workshop was made possible from a Run Project grant Nathan received from My Choice Matters.

If you’d like to learn more about employing someone in your organisation or if you would like Nathan to come and speak, please contact nathanbasha@gmail.com
If you are a person with intellectual disability or family member and are interested to hear more about the workshop, please contact nathanbasha@gmail.com

Nathan Basha
Nathan Basha is young man who might happen to have Down syndrome but he says, “That’s not who I am”. 

NB*’s mission is to deliver presentations that inspire all people to achieve their potential. Through engaging with the corporate sector and the broader community, Nathan aims to create meaningful employment opportunities for people with disability.

Click here to read more about Nathan Basha.

'Now I See' - a good resource for local libraries

Does your local library have Now I See, which was released for World Down Syndrome Day in March this year? You can always ask that your library add particular titles to their collection - putting in a request is an easy and effective way of promoting your community's resources about people with Down syndrome for Down Syndrome Awareness Week, in October. Here's an article about one Melbourne suburban council's commitment to provide copies in all of their libraries:

The upside of Down
Neil Walker, The Bayside News, 19th March 2014
... (Phil Wall's) memory of that day is vividly described in a new book entitled Now I See, compiled by Carolyn McDiarmid and Angela Blakston. Mr Wall’s family story called Surprise, Surprise is one of 50 in the book, written by parents and grandparents of children with Down syndrome ... Kingston City Council has agreed to buy copies to be made available at all Kingston libraries.

Down Syndrome NSW members can borrow a copy of now I See from the library:

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



Tuesday, 16 September 2014

Scrapheap 2013 video part 2, as promised


Re-live more of the 2013 ride before you hit the road!




The journey to Nymboida is about to begin for the 2014 Scrapheap Adventure Ride crew as we add to the $265,000 that has been raised for Down Syndrome NSW over the last five years.

But before they set off, re-live the highlights of the 2013 ride (part 2) in the video above and don't forget to donate to this wonderful cause:








News and commentary on the NDIS (25)

This infographic, giving an overview of the NDIS Quarter 4 2013/2014 Report
was published on the NDIS Facebook page on 15th September 2014,
where you can access are larger view.
NDIS on track and on budget
NDIA (Media Release), 18th August 2014
People with disability are accessing the National Disability Insurance Scheme (NDIS) in record time and costs remain on track, according to the scheme’s latest quarterly data.

The “Report on the sustainability of the scheme”, released today, shows the average cost of individualised NDIS support packages in the first year of the scheme was $34,600* — within the funding expectation of $35,000.

National Disability Insurance Agency (NDIA) chairman Bruce Bonyhady said while early data needed to be approached with caution, a picture was starting to emerge ... read the full media release here.

NDIS events, NSW


NDIS Community Information Forum
Newcastle Jockey Club, Darling Street, Broadmeadow
Tuesday, 7 October, 10am to 12pm
NDIS Provider Forum
Newcastle Jockey Club, Darling Street, Broadmeadow
Tuesday, 7 October, 1pm to 3pm
NDIS Community Information Forum
Belmont 16’ Sailing Club,The Parade, Belmont
Wednesday, 8 October 2014, 10am to 12pm
NDIS Community Information Forum
East Maitland Bowling Club, Cnr New England & Banks Street, East Maitland
Thursday, 9 October 2014, 6.30pm to 8.30pm
  • All details, including RSVP requirements are here, on the NDIS 'Events' web page


NDIS Newsletter - 1st September 2014
A link to subscribe to eNewsletters is also on this page.

Disabled call in lawyers to access NDIS
Jared Owens, The Australian, 18th August 2014
Australians with disabilities have begun suing the government to break into the National Disability Insurance Scheme, forcing courts and tribunals to navigate the scheme’s early flaws. Administrative Appeals Tribunal hearings have so far revealed confusion about the NDIS legislation and heard participants were given incorrect information about their entitlements ...

Opinion: Scheme helping people with disabilities
John Ajaka (NSW Minister for Disability Services), Newcastle Herald, 24th July 2014
... Just last week I met with a woman who now uses her funding how she wants instead of being pigeonholed into what services the government funded. She goes to dancing class, got herself a new set of wheels (chair) and was brought to tears knowing she would be supported like this, with far-reaching freedom, for the rest of her life ...

... Government staff have been extensively briefed on these changes - and most of them support this vital reform.The small number of people who do not agree with these terms are making a lot of noise and tarnishing the NDIS as a whole, and muffling the stories of the happy 2000-plus clients already in the scheme.

The Stockton redevelopment pre-dates the NDIS by almost 15 years and should not be associated with it, especially when it is being used as a scapegoat to blemish a welcomed, bipartisan supported social reform ...
read the full opinion piece here.

Monday, 15 September 2014

It's time to hit the road! Scrapheap Adventure Ride 2014


Dozens of motorbike riders from all over Australia will this week set off on the fifth Scrapheap Adventure Ride to raise money for kids with Down Syndrome.

This unique event involves motorcycle enthusiasts from all over the country purchasing a bike for no more than $1000 and doing it up for an adventure ride through the Aussie outback, with the riders all sponsored by their family and friends.

Over the last five years the event has raised over $265,000 for Down Syndrome NSW.

Click below to watch the highlights from last year's ride (and stay tuned for part two).



Riders begin their journey at home or wherever they like but arrive at the same destination.

This year that destination is Nymboida in northern NSW, about 40km south of Grafton, where we will be from the 19th to the 21st of September.

If you’re not a rider, you can support the Scrapheap Adventure Ride and Down Syndrome NSW by sponsoring a rider or donating to the cause.

To donate to this amazing cause, visit http://everydayhero.com.au/event/scrapheap

Added 16/9/2014:



A day in the life ... new dancework for Sprung!!


Sprung!! (in its third year in the Northern Rivers area) is a unique dance theatre ensemble already making a name for itself in the national scene following performances at the 2012 National Accessible Arts conference and the 2014 Australian Youth Dance Festival in South Australia. It is an exciting blend of dancers, artists and performers with diverse backgrounds, strengths, and vulnerabilities, who create deeply felt works that engage audiences and communities.

A day in the life… is a ground-breaking new work developed under the leadership of Sprung!!’s new Artistic Director, Michael Hennessy, who spent nine years with the famous Sydney Dance Company. Sprung!!’s Senior Associate Artists in Residence; Peter Notley and Alison Toft, along with Junior Associate Artist Tara Coughlan, joined Hennessy to collaborate with the ensemble of a dozen dancers with and without disability to develop this exciting project, which explores the everyday lives of the dancers and performers; the highs, the lows, the joys, the sorrows, the hopes and dreams they sometimes encounter.

Music by local composer Fred Cole and film overlays by Film Maker John Rado complete A day in the life… allowing the audience a brief interaction which will touch everyone to their core!

For further information and media enquiries, contact the General Manager on 0468 356-164 or info.sprung@gmail.com

Friday, 12 September 2014

Weekend reading and listening: 13th - 14th September 2014


Talking to kids about disability (and Voldemort)
What Do You Do Dear?, Mary Evelyn, 5th September 2014
... I looked behind me and watched his mother’s eyes widen with embarrassment as her face turned stop-sign red. She glared at her son, took him by the arm and mouthed angrily into his ear: “Don’t. Say. Anything.” ...

What Are You Going to Do When He Grows Up?
Mardra Sikora, Huffington Post, 9th September 2014
... here comes graduation day, barreling down like you never knew it was coming. The two-minute warning bell and you're standing without your homework, without your research paper, without a map to class ...


Margaret Sullivan, The New York Times, 9th September 2014
.... Kari Wagner-Peck, whose son has Down syndrome, thinks those comments constitute a form of hate speech and should not have been posted ... I heard from many readers who echoed Ms. Wagner-Peck’s sentiments ...

Disability and Friendship
Simeon's Trail, 9th September 2014
... Instead of encouraging friendship, I introduced the concept of pity, ie, "it's hard for him to do things." By congratulating her for doing what came naturally (playing with a same-aged peer), I highlighted the difference and gave her superiority in the relationship by telling her he needs help ...

Breastfeeding Josee…Ten Tips For Breastfeeding A Baby With Down Syndrome
The Milk Meg, 7th September 2014
... I now want to share with you some of the trials and tribulations we encountered as we learnt the breastfeeding ‘dance’; I always like to think of breastfeeding in this way! It really is like two people learning a new dance together; it takes lots of practice and patience ...

9 Things People Don’t Get About Special Needs Parents
Ellen Seidman, Babble, 10th September 2014
... in most ways I am just like other parents (and in most ways, Max is very much like other kids ...

What a difference differences make (Audio file 17m 59s + transcript)
Jane Mersky Leder, PRX (Public Radio), 17th July 2014
An intimate portrait of three adults with intellectual disabilities and the producer's journey from uneasiness to acceptance and love ...
Dr Brian Chicione, Adult Down Syndrome Clinic: She interviewed three adults with an intellectual disability, two of whom have Down syndrome. Perhaps I can sum up her journey by saying that she learned acceptance by getting to know the three individuals she interviewed, spending time with them and listening to them.

The Spaces In Between
Samantha Connor, The Stringer, 24th August 2014
... Paid support workers won’t hug you, but they will take you to your day programme. Friends and family live in the same circle, and they will hug you as much as you want. He looked at me. ‘Why are they in circles?’

That’s the question that keeps coming up. Who else in the world has areas firmly delineated by ‘professional boundaries’ when it comes to your day to day life? How can you compartmentalise your whole life into little circles? ...

Acting CEO announced by Down Syndrome Australia

Down Syndrome Australia sincerely welcomes Jackie Softly as the Acting CEO as we farewell our inaugural CEO, Catherine McAlpine.

Jackie has extensive experience in the disability sector and has been a Director of Down Syndrome Australia since its inception in 2011. ‘Down Syndrome Australia is very fortunate to be able to draw on the experience and talent of board members to ensure continuity during this time of change,’ says Angus Graham OAM, Chairman, Down Syndrome Australia, ‘and we are grateful to Jackie for her ongoing commitment and support while the search for a new CEO is conducted.’

Down Syndrome Australia also thanks Catherine McAlpine for her contribution and warmly wishes her all the best for the future. Graham says ‘Down Syndrome Australia has very much appreciated Catherine’s passion and dedication during the establishment phase of the organisation, and looks forward to building on the strong base she has established.’

Thursday, 11 September 2014

Theatre in Orange, NSW


RSVP to Michelle Pearce:  mpearce@orange.nsw.gov.au or 02 63938117

The Belonging Project - photos published

The Belonging project has published the first of photographic section of its research with young rural people with disabilities:
The Belonging project is finding out what helps young people with disability who live in country areas feel like they belong and they are connected. 
30 young people from NSW, Qld and Vic did this research with us. They took amazing photos about what is really important in their lives.
There is more to come - this is a great start.

Wednesday, 10 September 2014

Progress on devolution of Westmead and Rydalmere large residential centres

People with disability to move closer to their families
NSW Ageing, Disability and Home Care (media release), 4th September 2014

Minister for Disability Services, John Ajaka and Local Member for Menai Melanie Gibbons today visited a new group home in Liverpool, which is scheduled to open next month as part of replacing Metro Residences in Westmead and Rydalmere.

In 2014/15 the NSW Government will spend more than $43 million to redevelop Metro Residences as part of the biggest decentralisation attempted in Australia to date.

"In the coming months more than 90 people will move from outdated facilities and into purpose-built new homes integrated into local neighbourhoods," Mr Ajaka said.

"Families and clients have chosen where their new homes are built and were closely involved in the design process during construction.

"The brilliantly designed homes will place residents closer to their families and provide opportunities for increased participation in their local communities."

Ms Gibbons said the properties will be protected with fire sprinkler systems and will provide every resident with their own bedroom, an accessible kitchen, two large living rooms and a landscaped backyard.

"Five residents will soon call this place their new home. It will be staffed by nurses so that residents can access the care they require.

"Providing the opportunity to exercise choice and control by residents and their families were the hallmark of this major project."

More than 300 people from the Westmead and Rydalmere Centres will be living in 64 brand new houses to be located in Sydney, the Central Coast and Wollongong by the end of 2015.

Tuesday, 9 September 2014

University of Sydney: Inclusive Education Program Open Day

From the Centre for Disability Studies, University of Sydney:
The Inclusive Education Program is looking for people who are interested in going to classes and experience university life at the University of Sydney in 2015. 
There are lots of different classes available - come to our Open Day to find out more: 
Tuesday, 14th October 2014, 11am – 5pm 
The University of Sydney, Camperdown 
For people with an intellectual disability who would like to experience university - you can bring a friend or support person if you like. 
Hear from other students who have audited a course at Sydney Uni, check out the campus and apply for a place in 2015. 
You can go to some classes without needing to do a whole course at the university. This is called "auditing". Classes will begin in March 2015 and you can take part in the program for up to 2 years. 
What is an auditing student?
  • Attends lectures and tutorials
  • Works on an individual project
  • Receives a certificate of attendance
  • It's free!
You must register for the Open Day - further information and links to registration are on Centre for Disability Studies website, here.
Download the flyer for Open Day hereto pass on to someone else who might be interested.

You can read a 2013 report about the Inclusive Education Program here.

People with Down syndrome in the media

Daniel Island teen living a dream at College of Charleston
Elizabeth Bush, Daniel island News, 3rd September 2014
Studying, enjoying intramural sports, and socializing with friends are just a few of the activities Daniel Island resident Gabby Meyer is looking forward to as she starts her freshman year at The College of Charleston.
“And tailgating!” the Bishop England High School graduate added enthusiastically before heading off to move into her new dorm at COC a few weeks ago. “…I love staying busy!” ...


  • See the post above for information about an Open Day for the Inclusive Education Program at the University of Sydney, in October.

Local son works years for his Eagle Scout Badge - soaring above his special needs
Jersey Tomato Press, 30th August 2014
It took some time, but local boy Scout and Nutley son Sergio Ciccolella never gave up, and worked years to achieve his dream: to be awarded the highest honor in the Boy Scouts, the Eagle Scout badge and honor ...

Special Olympians
Elouise Hawkey, Young Witness, 27th August 2014
Living with Down syndrome can have its challenges, but it hasn't held back two talented sportspeople from reaching an elite level of competition. Former Bellhaven Special School students Catharine Keir and Joe Maloney will head to Melbourne in October to take part in the 2014 Special Olympics National Games.

  • Catharine with an 'A' was written by Catharine's mother, Edna Keir - copies are available for loan to members from the Down Syndrome NSW library.
How This Doodle Changed the Life of a Young Man With Down Syndrome
The Mighty, August 2014
Andrew Banar has four words to say to you: Be strong, rock on.
It’s been his mantra since he began saving up for college. The 22-year-old, who has Down syndrome, decided he wanted to further his education after hearing his cousin talk about life after high school. Banar originally planned to run a lemonade stand, but his mom, Karen Pickle, had another idea after noticing a rock n’ roll-themed doodle her son had drawn ...
WA NDIS My Way personal story: Mr and Mrs Junor (5 m 27s)
WA Disability, Published on Aug 4, 2014
For the WA NDIS My Way trial in the Lower South West (and Cockburn and Kwinana from July 2015), we’ve produced four videos to share the stories of people benefiting from individualised My Way planning. This video features married couple Mark and Melissa, who have the support they need to manage their own household and enjoy life in their community.



Monday, 8 September 2014

Step UP! update


Ready, Steady, Walk!!!

Step Up! for Down syndrome is on again this year and it’s time to put save the date so you don’t miss out.

Sydney - Sunday 19th October 2014

Picton - Sunday 19th October 2014 - new event - details to come

Wagga Wagga - Sunday 26th October 2014

Newcastle - Sunday 23rd November 2014

It’s easy to get involved –
  • Check out the four different events happening around NSW and decide which is best for you 
  • Register online HERE or by using the links below (or go to www.stepupfordownsyndrome.org.au and choose your area)
  • Invite your friends and family to join in 
  • Get fundraising
  • Come on the day, walk and have fun!
For those joining us for the Sydney walk, you’ll be excited to know the walk will start and finish at the same place. So no more worrying about getting back to the car or dropping off picnic supplies, everything will be in the one easy location.

This year you will need to bring your own picnic and drinks (as there will be no food to purchase other than the nearby cafes and takeaway outlets located around Circular Quay).

If you’re not up to walking, you can still participate as we’re also looking for volunteers to help manage the day. If this interests you, please email us –stepup@dsansw.org.au

We’re looking forward to Step UP! for Down syndrome 2014 and are excited about reaching our fundraising goal of $50,000! Thanks for being a part of our team and helping make this day a fun and memorable event.

See you there!!!

DS NSW Team


Friday, 5 September 2014

Weekend reading and viewing: 6th - 7th September 2014


How We Explained to Our Son That Down Syndrome Doesn’t Mean Something’s Wrong
John M Simmons, The Mighty, 4th September 2014
... “Mom, what happened to me?” he asked ... “What happened to me? What happened to Jack?” Amy was listening now. She asked him what he meant. “What happened to me? Was I in an accident? Did the car crash? Did somebody hurt Jack? What happened to me?”

How do you explain to your son that Down syndrome doesn’t mean something’s wrong?

Amy became wide awake. How do you answer a question like that? “Oh. You mean why it is hard for you to learn? Do you mean what happened to your brain?”

“Yes,” he responded. “What happened to Jack?” ...


Dear parent of typical children
Ellen Stumbo, Finding Beauty in My Brokenness, 2nd September 2014
... Sadly, the fear of disability is still out there, and dear parent of a typical child, you can help your child understand that disability is indeed a normal part of life – but you can only teach what you know.

If you are uncomfortable with disability and pull your children away from other kids with disabilities when they are playing together at the park, or at a party, or at the library, you are teaching your kids that children like mine are scary, repulsive, and people to stay away from ...


I'm a Third Generation Special Needs Mom
our three little birds, 3rd September 2014
... I thought, "wait a second... I'm a special needs parent!?" Ellie was already a couple months old and I never made the connection. But then I realized something pretty amazing. I had just joined the ranks of two other pioneer women in my family. My mom and my Grandma Hattie were also special needs mamas. And they were damn good at it ...

Sue Whiteman: The gift of dance...ability (includes 4 m video)
Catherine Marciniak, ABC Open, 27th August 2014
Sue Whiteman is what people today call an "integrated dance teacher".

It's a fancy title for what Sue has been doing for years and what comes naturally to her: giving people the gift of dance whether or not they have a disability ...

Peter FitzSimons, The Sydney Morning Herald, 29th August 2014
... in Federal Parliament on Wednesday afternoon, by Federal member Ewen Jones, who spoke with great warmth about a 40-year-old in his electorate last Saturday night was made a life member of Townsville's Brothers Rugby Club, Frank Fanning ...

Op-ed: How One Formerly Ableist Lesbian Mother Opened Her Eyes
Keston Ott-Dahl, Advocate.com, 25th August 2014
What happens when a baby being carried by a surrogate is diagnosed with a disability? LGBT parents should think carefully about the answer ...

How to protect your child with special needs from sexual abuse
Maureen Wallace, She Knows, 30th August 2014
Sexual abuse is every parent's nightmare, exceeded only by the idea of losing a child completely. The vulnerability of children with special needs makes them the ideal predator target ...

A classic, from a Dad -

Two Parenting Fears That Never Came True
Rick Smith, Noah's Dad, 15th September, 2011
When Noah was born one my many fears was that my wife and I were left to this world of Down syndrome all alone ... Another fear I had was that our family was going to be so much different than a typical family.


Berlin memorial unveiled

Nearly 70 years after the end of World War II, a new memorial has been unveiled in Germany. These two news reports include photos of the memorial:

Nazi disabled victims memorial unveiled in Berlin
BBC News (UK), 2nd September 2014
A glass monument has been publicly opened in Berlin to 300,000 victims of the Nazis with mental and physical disabilities or chronic illnesses. The 24m-long (80ft) blue, glass wall is in front of the Berlin Philharmonie building, where the office housing the Nazi "euthanasia" programme once stood. It is the fourth monument in the German capital to victims of the Nazis ...

Monument Seeks to End Silence on Killings of the Disabled by the Nazis
Melissa Eddy, The New York Times, 2nd September 2014
The first to be singled out for systematic murder by the Nazis were the mentally ill and intellectually disabled. By the end of World War II, an estimated 300,000 of them had been gassed or starved, their fates hidden by phony death certificates and then largely overlooked among the many atrocities that were to be perpetrated in Nazi Germany in the years to follow.

Now, they are among the last to have their suffering publicly acknowledged. On Tuesday, the victims of the direct medical killings by the Nazis were given their own memorial in the heart of Berlin ...