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:

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
If you are a person with intellectual disability or family member and are interested to hear more about the workshop, please contact

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

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

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: 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 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 –

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!!!


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,, 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 ...

Thursday, 4 September 2014

Library: 4th September 2014

New Title
Targeting Language Delays: IEP Goals & Activities for Students with Developmental Challenges
Caroline Lee
Many school-aged children with developmental and communication challenges need help with their listening, language, and reading skills. Targeting Language Delays explains how to teach these skills in sequential steps using more than 100 goals and activities that can be incorporated into an IEP or used for home practice.

Part 1 offers background and tips on teaching language skills. Part 2 contains goals in key language areas:
  • following directions
  • negative "no" & "not"
  • "yes" & "no"
  • nouns
  • vocabulary (nouns & verbs)
  • classification and categorization
  • descriptors (including "same" & "different")
  • concepts
  • "wh" questions
  • listening skills (discrimination, memory & processing)
  • word & sentence structure
  • whole word reading

Archiving Project
Our archiving project continues on a weekly basis in the office. We would like to have a duplicate set of our calendars for the archive.

Are there any copies of DS NSW Calendars from the following years; 2000, 2003, 2007, 2009, 2010, 2011? Any extra copies hiding in members' homes from these years would be greatly appreciated.


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

DS NSW submission on welfare review

Recently we asked Down Syndrome NSW members to contribute to our response to the current federal review of welfare reform. Many thanks to everyone who completed the survey monkey, got in touch with the office or submitted a comment.

The McClure Review of Welfare Reform has the potential to make a significant impact on people with Down syndrome and the quality of their lives and the lives of their families and carers.

A copy of the DS NSW submission to the Review is available here.

Wednesday, 3 September 2014

Stepping Stones parenting intervention in NSW: August update

A world-first parenting intervention is happening in New South Wales, and you’re invited to be part of it.

From early 2015, every parent and caregiver of a child with a disability in NSW can get free parenting support through the Stepping Stones Triple P (SSTP) Project. Click here to find out more.

Stepping Stones is an evidence-based parenting program which can significantly reduce child behaviour problems and improve parental wellbeing.

To access free help under this project, parents of children with a disability aged 2 to 10 are invited to first complete a survey called My Say and register their interest. Professionals who work in this field are also invited to do the My Say survey and register their interest in free training and resources.

So far, 142 parents and 395 professionals have responded to the survey, but we need to hear from a lot more. We’re using survey responses to help identify regions in high need of parenting support, so don’t let your area miss out! Please do everything you can to let local parents and professionals know about the SSTP Project and the importance of filling in the My Say survey.

You can also like the project’s Facebook page to help spread the word that free parenting support is coming to NSW.

I look forward to bringing you more information about the SSTP Project, and thank you in advance for your support.

Professor Stewart Einfeld
Principal Investigator, SSTP Project
FHS Senior Scientist, The Brain and Mind Research Institute

Tuesday, 2 September 2014

MCA: 'Help us become the Museum you need us to be'

The Museum of Contemporary Art Australia (MCA), in Sydney, would like to become more inclusive at all levels and is looking for your ideas about how to do this. 
While we are proud of the Bella Program for children with disability, and the physical access improvements we've incorporated into our upgraded building, we're aware that we have a long way to go to be as welcoming of people with disability as we are of people without disability. If you are interested in contemporary art, we want to be the museum that you immediately think of when you're looking for an accessible day out in Sydney.

We have recently opened an online survey that you can find here.

Latest additions to 'events' pages

Down Syndrome NSW events

Mothers and Others Luncheon
InterContinental Hotel
Sunday 14th September 2014 - Sydney

DS NSW Annual General Meeting
28th September 2014 - Parramatta

Other 2014 - 2015 events

Sexuality and Relationships Forum
Family Planning NSW - for parents
Saturday 6th September 2014 - Ashfield

National disability (social) policy and technology: Do we have a framework? And does it work?
Social Policy Research Centre (UNSW) seminar presented by Professor Gerard Goggin (USyd)
Tuesday 9th September 2014 - Kensington

Shaping Our Future
Respite and Community Care Conference 2014
Thursday 23 - Friday 24 October 2014 - Parramatta

Camp Jonathon is a Christian camp run for children ages 8 - 18 years with developmental disability.
Sunday 11 - Friday 16 January 2015 - Mt Victoria

Monday, 1 September 2014

12th World Down Syndrome Congress: India, 2015

Registrations are now open for next year's World Down Syndrome Congress in Chennai, India:

17th August - 21st August 2015

Call for papers
Opening - August 2014
Final call - November 2014

Friday, 29 August 2014

Weekend reading and viewing: 30th - 31st August 2014

Jamie Edgin and Fabian Fernandez, New York Times, 28th August 2014
... Mr. Dawkins’s argument is flawed. Not because his moral reasoning is wrong, necessarily (that is a question for another day), but because his understanding of the facts is mistaken. Recent research indicates that individuals with Down syndrome can experience more happiness and potential for success than Mr. Dawkins seems to appreciate ...

An Awesome Life Lesson From My Son With Down Syndrome: Friends and New Beginnings
John Simmons, Huffington Post (The Blog), 26th August 2014
... Perhaps I would have no more anxieties with new beginnings than my son experiences, if I looked at them in the same light that he does. If I loved people like Jack does; if I valued friendship more than anything else someone could give me; if my ventures were solidly based on people and relationships rather than things; new beginnings, for me, would be different ...

Jisun Lee, Kimchi Latkes, 22nd August 2014
It is hard sometimes when it feels like the world is telling you that your kid is more wrong than right, not to let some of it seep in. 

If you only know one thing about Down syndrome, know this 
Sipping Lemonade, 21st Auust 2014
“You know, Kate and me love rolling around on the ground in circles together. Kate is really good at rolling. And you know how my other sisters are scared to hide under the blankets and play tent? Well, Kate is never scared to hide under the blankets.” I smiled at the sweet things 5-year-olds value about their sisters.

Then he said, “Down syndrome makes her really good at some things” ...

Robert Gebelhoff, Milwaukee Wisconsin Sentinel Journal, 21st August 2014
Eight students with cognitive disabilities had the chance Thursday afternoon to do something few of their peers get to do: move into a college dorm.

That's because Concordia University Wisconsin, in partnership with Bethesda College of Applied Learning, will be housing the students through a new program aimed at developing independent living among adults with intellectual disabilities ...

Three-year-old Alice to star in Down's syndrome film after Plymouth student mum's photography project
Plymouth Herald, 21st August 2014
A mum has won an international award for telling the story of her relationship with her Down's syndrome daughter through photographs ... She embarked on the project after struggling to come to terms with the fact her daughter, Alice, was born with Down’s syndrome ...


On The Dignity of Risk
A Walk on the Happy Side, 20th January 2009
... Over protection can keep people from becoming all they could become.

Many of our best achievements came the hard way: We took risks, fell flat, suffered, picked ourselves up, and tried again. Sometimes we made it and sometimes we did not. Even so, we were given the chance to try. Persons with special needs need these chances, too ...

Mothers and Others Luncheon

Our guest speaker will be the delightful and engaging Anne Therese Naylor. Anne is an author, artist, advocate and public speaker. Her book Art from Adversity: A Life with Bipolar describes living with bipolar and caring for her four children, her elder son has Down syndrome. She is a long standing member of Down Syndrome NSW and was named NSW Carer of the Year 2013.

Sunday 14th September 2014
from midday

The Bridge Room, Cafe Opera, InterContinental Hotel
117 Macquarie St, Sydney

Cost: Lunch incl sparkling wine - $83 p/person; Lunch only - $70 p/person

Thursday, 28 August 2014

New books

The Autism Discussion Page on the Core Challenges of Autism: A Toolbox for Helping Children with Autism Feel Safe, Accepted, and Competent (2 volumes: blue book and green book)
Bill Nason, 2014

Launched as both paperback and Kindle editions last week, and available for purchase from Amazon:
The Autism Discussion Page blue book focuses on the core challenges associated with autism (cognitive, sensory, social, and emotional) and provides concise, accessible information and simple tools for supporting children with these vulnerabilities. 
The Autism Discussion Page green book covers anxiety and stress, challenging behaviors, stretching comfort zones, discipline, and school issues. It also provides more general teaching and mentoring strategies for coaching children on the autism spectrum in basic daily living strategies to improve their day-to-day lives.
Based on posts on the popular online community page and organised by subject for ease of reference, these books offer an excellent understanding of how children with autism process and experience the world and effective strategies for coping with the challenges.

BSWAT Senate hearing and court case: recent progress and commentary

Progress on the Business Services Wage Assessment Tool (BSWAT) debate is gaining more media attention as Senate hearings approach:

Back pay class action by 10,000 workers with disability will continue
Helen Davidson, The Guardian, 26th August 2014
A class action against the government over back pay allegedly owed to about 10,000 workers with an intellectual disability will continue, regardless of whether the Senate passes a bill establishing a repayment scheme, because lawyers representing the employees claim it will only pay around half of what’s owed.

The Business Services Wage Assessment Tool (Bswat), assessed wages for around half of the employees working in government supported Australian Disability Enterprises (ADEs) – previously known as sheltered workshops ...

Kicking an own goal for team Australia
Graeme Innes, Howzat, 26th August 2014
Mitch Fifield is one of the best ministers in the Abbot government- you would have to be to have piloted the National Disability Insurance Scheme unscathed through the tsunami of the recent federal budget. But he has been badly advised if he blames the situation of employees with disabilities in sheltered workshops or Australian Disability Enterprises on the Australian Human Rights Commission. Let me tell you the real story ...
First published in The Australian. This is the unedited version.

Disability advocates call on Senate to stop Bill stripping wages from workers with intellectual disability
People with Disability Australia (media Release), 25th August 2014
Today, four national peak disability groups will join with the AED Legal Centre and more than 30 community disability organisations to launch an open letter calling on politicians from all parties to vote against a bill to extinguish the legal rights of up to 10,500 Australian workers with intellectual disability. Some of these workers earn less than $1 an hour ...
Govt Puts Funds Towards Disability Wage Arrangements
Probono Australia News, 25th August 2014
The Federal Government has announced $173 million to help the supported employment sector work towards new wage arrangements for disability employees currently working in Australian Disability Enterprises (ADEs). This follows the suspension of the Business Services Wage Assessment Tool (BSWAT) in December 2012.

The Government says funding will be used in part to develop and implement a new productivity-based wage tool (including new assessments) for use across the supported employment sector. However the announcement comes as disability peak body People with Disability Australia, in partnership with national peak disability and advocacy organisations, have called on Parliament to reject the Business Services Wage Assessment Tool (BSWAT) Payment Scheme Bill 2014 ...

Minister Fifield must reward genuine effort not failureInclusion Australia (formerly National Council on Intellectual Disability), 22nd August 2014
The announcement by Minister Fifield of an additional $173 million to support employees get fair wages in Australian Disability Enterprises (ADEs) is welcomed as a step forward by Inclusion Australia.The announcement, however, does not resolve serious concerns about the treatment of employees with intellectual disability, nor the ongoing viability of ADEs ...
Mitch Fifield, The Australian, 21st August 2014
Few would deny that the Australian Human Rights Commission is comprised of well-meaning advocates who have the best of intentions discharging their duties ...
Disability wages system to get $173m
Michelle Webster, Illawarra Mercury, 21st August 2014
A plan by the federal government to create a national wage system for employees with disabilities should be made in association with the Fair Work Commission, Greenacres chief executive Chris Christodoulou says ...

What's fair pay for a fair day's work for the intellectually disabled?
Louise Milligan, 7.30 (ABC), 21st August 2014 (Video 8m 15s, and transcript)
Workers with intellectual disabilities from what used to be known as 'sheltered workshops' are seeking back pay after the Federal Court ruled that paying them a fraction of the minimum wage was discriminatory and they are fighting their case despite a Government offer of half what they're claiming in return for dropping their case.

  • Australian Disability Enterprises are sharing their views through the website AEDs Work for Me

Wednesday, 27 August 2014

Research news and commentary #9 for 2014

Lines of Inquiry, #5, August 2014
Centre for Applied Disability Research (A national Disability Services initiative)
You can subscribe online to receive Lines of Enquiry by email, or read it from the website.

Reimagining disability: Ground-breaking new research
University of Waikato (NZ), 13th August 2014
University of Waikato PhD candidate Ingrid Jones is conducting ground-breaking new research into changing the way society thinks about disability. Her research, entitled “Reimagining disability: Towards learning disability pride” aims to explore the concepts of disability pride and ableism with a group of learning (intellectually) disabled people.

“Having a disability is largely viewed as having a problem, when it shouldn’t be,” she says. “It’s just a part of the diversity of humanity. The reason we have disability oppression is because society views disability as a problem. Being “able” is seen as the norm, when society is more diverse than that.” ...

Richard McKie, The Observer (UK), 17th August 2014
A furious international dispute has erupted over the publication of a paper that claims the hobbit man of Flores was a modern human who had Down's syndrome ...

Inclusive Classrooms Provide Language Boost, Study Finds
Michelle Diament, Disability Scoop, 29th July 2014
For young children with disabilities, the key to mastering language may be surrounding them with their typically-developing peers, researchers say. Over the course of just one school year, a new study finds that preschoolers with disabilities who attended mainstream classes with highly-skilled peers were using language on par with their classmates without disabilities ...
  • Peer Effects in Early Childhood Education: Testing the Assumptions of Special-Education Inclusion Laura M. Justice et al, Psychological Science, published online 25th July 2014 Abstract free online
Hearing new words first helps children with Down syndrome when reading
Down Syndrome Education International, 29th July 2014
Recently-published findings suggest that when children with Down syndrome attempt to read unfamiliar words, it is helpful if they know what the word sounds like ...

Down syndrome teens need support, health assessed
Rebecca Graham, ScienceNetwork Western Australia, 24th July 2014
Young adults with Down syndrome experience a range of physical and mental health conditions over and above those commonly reported in children with the condition—and these health problems may significantly impact their daily lives, according to recent research. The collaborative study between the Telethon Kids Institute, Curtin University and the University of Queensland also found these young people often experience multiple conditions, and that mental health conditions were almost four times more prevalent in these young adults than in those from the general WA population ...

Mothers of children with autism benefit from peer-led intervention: study
Jennifer Wetzel, Research News @ Vanderbilt, 21st July 2014
... In a first-of-its-kind study, researchers from Vanderbilt University examined two treatment programs in a large number of primary caregivers of a child with a disability. Participants in both groups experienced improvements in mental health, sleep and overall life satisfaction and showed less dysfunctional parent-child interactions ...

Tuesday, 26 August 2014

Down syndrome diagnosis - new support available

Down Syndrome Australia 
26th August 2014

The recent ill-informed and anti-choice comments by Richard Dawkins, directing prospective parents who have a prenatal diagnosis of Down syndrome to terminate the pregnancy, are an unfortunate reflection of the attitudes of many medical professionals in Australia. Expectant parents receiving a diagnosis of Down syndrome have traditionally been offered little in the way of relevant, up-to-date, evidence based information and co-ordinated support at this time of heightened emotional vulnerability.

Contemporary research shows that the provision of balanced information from a number of sources and sufficient space for deliberation have a critical impact on the wellbeing of families in this situation.

Down Syndrome Australia welcomes technological advances that support improved health outcomes for expectant women and their children. ‘Down Syndrome Australia respects the right of families to make decisions appropriate to their beliefs and circumstances,’ says Catherine McAlpine, CEO Down Syndrome Australia, ‘but we also believe that the current level of care usually experienced by prospective parents does not meet this standard of balanced information and sufficient space for decision making.’

Down Syndrome Australia is pleased to address this issue with the launch today of two support resources;
  • Down Syndrome Australia pre and post natal information line 1300 881 935. This national 1300 number will connect callers to their local state or territory Down syndrome support organisation to enable access to non-directive information, to ask questions and to speak to, or arrange to speak to, a parent of a child with Down syndrome.
  • Prenatal testing for Down syndrome fact sheet. This fact sheet contains easy-to-understand, factual and balanced information for people considering prenatal testing or if a test shows that a baby may have or does have Down syndrome. Download it here.

Down Syndrome Australia recommends that whenever prenatal testing is provided in Australia, good quality information and time for prospective parents to deliberate are also included to ensure best practice. Current, up-to-date and balanced information on Down syndrome, examples of lived experiences and links to other non-directive resources and avenues for support can be found here.

The production of these resources was assisted by a grant from the federal Department of Health.

People with Down syndrome in the media

Ours, Issue#1, August 2014
... I’m in my last year of school, at high school. I want to be a kindergarten teacher so I’m doing a special early childhood program through Gateway, where I do a lot of writing and reading. I’m doing really well. I passed Level 2 NCEA, and last year I passed algebra and calculus in Level Two of NCEA ...
  • Ours is an independent '... platform for young people to start conversations with one another about what matters to them in the lead up to the (NZ) general election ...' (September 2014)
Downright successful, capable and happy
Debora Van Brenk, The London Free Press, 18th August 2014
She is an artist, a dancer, a six-sport competitive athlete with two part-time jobs. And now Val Nyhout has added blogger to her list of achievements.

One of the region’s most versatile Special Olympics athletes is finding the Internet an ideal place to tell the world what a great life she has.

While there’s a wide network of parents blogging about life with children who have Down syndrome, it’s a rarity that someone with Down syndrome writes her own ...

What a married woman with Down syndrome wants you to knowParker Myles, 13th August 2014
Meet Kate Owens. Kate got married 3 years ago, and is busy loving life. I felt her beautiful love story needed to be shared, so I asked Kate to share some things about herself as well ...

Meet Hollie, the six-year-old cancer survivor who's chopping off her waist-length hair to help others
Carys Lewis, Wales Online, 6th August 2014
... Six-year-old Hollie Evans was diagnosed with acute myloid leukaemia, a rare form of the cancer, at just 19 months old, and underwent five months of gruelling chemotherapy. On December 10 this year, the Tremains Primary School pupil, who was also diagnosed with having Down’s syndrome 10 days after she was born, will mark five years since the last of four rounds of chemotherapy. But her parents Hayley and Steve were last month given the long-awaited “all-clear” confirmation they’ve been desperately hoping for ...

Meet Alex Snedden (video 26m 52 s)
AttitudeLive (NZ),  2013
Alex Sneddon’s parents have always wanted the best for their son. From early on they helped him to create the kind of life he wanted. Now the 24-year-old who lives with Down Syndrome is holding down four jobs and living an independent life ...

Monday, 25 August 2014

National Disability Forum - online survey

As part of the Australian Human Rights Commission’s ongoing commitment to the protection and promotion of the rights of people with disabilities, Acting Disability Discrimination Commissioner the Hon. Susan Ryan AO is holding a National Disability Forum on 15 September 2014. Participation in the forum will be by invitation. 

 As part of our consultation process we are conducting an online survey, and we welcome responses from the public as outlined below. Further information about the availability of live streaming of the forum will be available in due course.

Notice of Annual General Meeting

35th Annual General Meeting

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

At this year’s AGM you will have the opportunity to get together with other members, meet the new Board and review the past 12 months of Down Syndrome NSW.
Please join us for light refreshments after the meeting.

For catering and seating purposes, please RSVP here or call the Office on 9841 4444 if you would like to attend the 2014 AGM.

The Information and Cultural Exchange centre is easily accessible by train, bus or car. Parking is available on the street. To plan your trip by public transport visit or call 131 500.

Nominations for the Down Syndrome NSW Board are now open. For more information on becoming a Board member or to complete a nomination form please visit our website. Board nominations close at COB Friday 5th September 2014

If you'd like to have a chat in person with our Executive Director, Tracylee Arestides, email her, or our current President, Matthew Kelly and we'll make a time to talk.

Friday, 22 August 2014

Weekend reading: 23rd - 24th August 2014

The first two links are just a small sample of responses to Richard Dawkins (see previous post) - there will be more:

Dear Richard Dawkins, You Are Wrong

Hayley Goleniowska, Huffington Post, 21st August 2014
Richard Dawkins, atheist author, provocateur, scientist, you must by now be well aware of the furore over your comments yesterday. Comments that it was 'immoral' to bring a baby with Down's syndrome into the world if you have a choice.

'Abort it and try again', was your advice because it is the 'civilised' thing to do as 'they are foetuses, diagnosed before they have human feelings.'

As I watched the Twitter debate unfurl, you continued that you would not recommend abortion for individuals with Autism, say, as they 'contribute' to society, for they are 'enhanced', which, in your view those with Trisomy 21 are not. You even went so far as to say children with Down's syndrome 'suffer'.

Now hold your horses just one moment Mr Dawkins. I think perhaps you are confusing non-essentialist, humanist thinking with a loss of humanity here ...

The power of being wanted
Ginger Stickney, Green Ginger Tea, 20th August 2014
Every night I do something with Jude that I don't do with any of my other children. Every night as Jude falls into sleep, her beautiful lashes brushing her plumb cheeks, her sweet lips puckered out, I whisper into her tiny shell of an ear "You were wanted. Never ever forget that we wanted you." ...  and I hope that someday she will whisper to herself "I was wanted. My parents wanted me. My siblings wanted me. My friends wanted me. The world wants me."

Young people with disabilities campaign for the right to learn
Andy Merriman, The Guardian, 19th August 2014
In June, my daughter attended a demonstration outside the houses of parliament. Sarah, who has Down's syndrome, travelled by coach from Somerset with fellow students and staff from her college, where she met 80 other young people to launch a campaign highlighting the need for educational equality for people with disabilities ...
Andy Merriman wrote 'A Minor Adjustment' in 1999, a popular book in our library collection.

What is the magic sauce for unlocking your child’s full potential?
Sipping Lemonade, 10th October 2013
... this eagerness to do, give, provide, find, research, etc. gave me a bit of anxiety early on. How much was enough? Was there ever too much? Were the therapists I was using the BEST I could find? Were the books I was reading the BEST I could read? What was the magic sauce? I needed to know ... It is the unconditional love that tells your child: you are worth the world not when/if you accomplish x, y, z—but because you are you. And you are enough ...