Address details

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

Saturday, 31 August 2013

Weekend reading and viewing: 31st August - 1st September 2013

Love that Max, 28th August 2013
... If Max's sounds bother someone, I'd hope that person would let us know in a respectful way. Give us a chance to handle it instead of being cowardly about it. I'd rather people bring things out in the open. Sometimes, kids come up to me and ask "Why does he talk funny?" The parents are embarrassed. But if the mom isn't going to talk properly to a child, or teach him that kids with autism are not contagious, I will!

Your worst nightmare
Ginger Stickney, Green Ginger Tea, 26th February 2013
The ultrasound tech asks what we're looking for and I explain the midwife's concern and my own. She looks at my chart, and says "The baby has Down's." I am not at a point where I feel comfortable correcting people so I just nod. "That was my worst nightmare" she says, "when I was pregnant with my last child." I don't know what to say. I am a little shocked, a lot sad, but not really offended. Maybe I should have been

Counseling for Prenatal Testing?
Huffpost Live, 21st August 2013 (Video: 31m 31s)
As prenatal testing for Down syndrome becomes more common, many women will face an array of information about their unborn children. But this confronts expecting mothers with difficult choices. How do counselors help women make these decisions?

CinemAbility director Jenni Gold on Hollywood and disabilities 
Bryant Frazer, Studio Daily, 26th August 2013
CinemAbility is a new documentary looking at how films and television shows have portrayed disabilities through history. Combining interviews with actors ... with supporting film clips ... director Jenni Gold shows some of the ways that the media and popular culture have impacted society's attitudes toward people with disabilities.

GONE: 150,000 fewer people with Down syndrome in the U.S.
Mark Leach, Down Syndrome Prenatal Testing, 26th August
The estimated number of people living with Down syndrome in the United States has been 400,000. This number has now been reduced by almost 40 percent. The number 400,000 was based on birth estimates: take whatever the birth estimate was, apply it as a percentage to total number of births and total number of lives, and 400,000 was the number that was arrived at. Last month, the Journal of Pediatrics published online a study that revises this estimate based on two key factors. The new study has already resulted in a revision on the Centers for Disease Control website, which lists the highlights.

Jen Logan, Down Wit Dat, 26th August 2013
... anger will be the fire that stokes the boilers into action. There is a lot of work to be done. I don't think that it is too much to ask that September contains less stories of hate and ignorance. Or that the stories that feature disability in every Lifestyle section of every mainstream publication not be written by the able-bodied or parents that haven't fully accepted their children with disabilities. I don't think that it is too much to ask that equal access and inclusive education be automatically available. I don't think that it is too much to ask that you stop labelling my kid, stop putting him in a little box that says "happy moppet" on the outside and expecting him to act a certain way, just because you believe it makes it easier for people to accept him.

What it takes to improve the lives of disabled people in remote communities: a case study from Warburton
Melissa Sweet, Croakey, 21st August 2013
A program to bring families and health professionals together on Country has been helping disabled people in a remote community, according to a presentation at the NACCHO Summit in Adelaide ... The program helps to build trust, relationships and respect, and supports participants to identify the solutions that will best help them as “the experts of their own situation”.
Craig Wallace, Ramp Up, 30th August 2013
After spotting a video on Labor social media sites using the word 'retard', Craig Wallace asks why we still tolerate disability being used as a sledge. ... Unlike the debates we might have amongst ourselves about terms like disabled, impaired, 'person first language' or even terms like 'crip', which has been appropriated by some people with a disability, the term 'retard' has a deep, dark place in the inner circles of disability hell.

'Retard' is the disability equivalent of the 'n' word. It is never used as anything but a weapon to demean, bully and slander people based on disability. It plumbs depths far below 'politically correct' language ... Disability isn't a sledge any more than gender, ethnicity or sexuality. We deserve better and should call it out regardless of who says what about whom.

Disability does not end with DisabilityCare
Shawn Burns, Ramp Up 28 Aug 2013
As the federal election draws closer, Shawn Burns reminds us that the disability battle will not be won until all elements of the National Disability Strategy are realised.

Friday, 30 August 2013

Ethan Saylor - campaigning for justice

Campaigning continues for a full investigation into the death of Ethan Saylor, a young man with Down syndrome, in shocking circumstances, in the US in January. This is not easy reading.

I Have a Dream – Justice for Ethan
Global Down Syndrome Foundation, 28th August 2013
... Regardless of where one feels blame is due in the “Stand Your Ground” case, (Trayvon) Martin’s death has led to national calls for a review of the laws. Should they be stricken? Or altered? Does anyone really feel that an unarmed teenager is now justifiably deceased?

Ethan Saylor’s death deserves an equally important national dialogue. There are now national calls for better training for law enforcement officers on how to deal with the differently-abled. But the question remains, “If Ethan were ‘typical,’ would there be criminal charges filed or at least an independent investigation into his death?”

Justice for Down syndrome man who died in movie theater
David M. Perry, CNN, August 29, 2013
Police violence against people with disabilities is not uncommon, but the cases don't seem to get a lot of publicity. Most people see the disabled as, at best, passive victims, objects to care for, perhaps to love, but not people with whom we automatically identify. This is a mistake. We are all only temporarily able-bodied. Accidents, illness, and age wait for us all. What happened to Ethan Saylor could happen to you.

Step Up for Down Syndrome

Thank you again for your participation and support of Buddy Walk and Step Up and Walk last year! Thanks to your incredible online fundraising efforts, over $125,000 was raised in total to support the participating State & Territory Down syndrome associations. Without your support, this would not have been possible.

In 2013 we are hoping to smash that figure by launching a new national fundraising event – Step UP! for Down syndrome.

Step UP! for Down syndrome is a new event developed by Down Syndrome Australia, the national voice for people with Down syndrome and their families, together with its eight members – the State & Territory Down syndrome associations.

Together we have set an ambitious national online fundraising target of $200,000 and we hope we can count on your help and participation again to assist us in reaching this goal.

Already Step UP! for Down syndrome is shaping to be bigger and better this year with participation from every Australian State and Territory and the opportunity for national sponsorship. Please find attached your ‘Save the Date’ card with all the details.

We will be in touch regarding some exciting prizes for the top Step UP! fundraisers and the biggest teams!

The online registration and Step UP! for Down syndrome 2013 website have been launched.  This year, registering to attend the event and creating a Step UP! page are both part of the one simple online process.

Step UP! for Down syndrome will be held in the following NSW locations:

Sydney: Sunday 13th October
Wagga Wagga: Sunday 20th October 
Illawarra: Sunday 27th October

More details can be found on our Step UP! for Down syndrome website.

If you have any questions about this year’s event, please do not hesitate to phone (02) 9841 4404 or email

Thank you again. We look forward to seeing you there!

Matthew Kelly
President, Down Syndrome NSW

Angus Graham
Chair, Down Syndrome Australia

Thursday, 29 August 2013

Federal election

All You Need to Know About Voting
DiscCo: Discussing all things disability, 
Thursday, August 22, 2013
You really can’t miss that we have an election coming up on 7 September to decide who will be our Government and local member for the next few years! So how do you make your voice heard and ensure things that are important to you and your community are put forward?

PWDA LinkUp #149 August 2013 
Newsletter of People with Disability Australia Inc
This Election edition of LinkUp is about the upcoming Federal Election. Voting is an important democratic right for all of us and this edition contains our four key messages for the 2013 Federal Election. People with Disability Australia’s election platform focuses on sustaining the NDIS, ending the barriers, stopping the abuse and making the Convention real, as realised through the National Disability Strategy.
We have taken a nonpartisan approach in developing this edition of LinkUp as well as our campaign strategy. This edition contains statements from the major parties on their respective disability policies in order to help you make an informed decision on Election day. We have also included information on accessible voting ... Guest Editor, Fiona Givens


Sam Paior posted this fabulous photo on the Down Syndrome Australia Facebook page, and has kindly agreed that we could share it too.  Soon it will have a much wider audience in New York:

If you are in New York City on Saturday September 21st, look up at the biggest screen in Times Square and you might catch this photo of my boy Ben, taken at the Scout Jamboree in Queensland earlier this year.

It will be part of a video to support Buddy Walk and the kickoff for the US National Down Syndrome Awareness Month. Ben was born in the US and is a dual Australia/US citizen.

Wednesday, 28 August 2013

Australian Down Syndrome Conference 2014

Announced last night by Down Syndrome Australia:

The inaugural Australian Down Syndrome Conference will be held in July 2014, in Canberra

The conference is for people with Down syndrome, their families and interested professionals. Child care will be available.

Date and details coming soon. Follow Down Syndrome Australia on Facebook for details as they are released, and/or the Down Syndrome Australia website.

Sophie's photograph of former PM now in Museum of Australian Democracy collection

The Museum of Australian Democracy ...  "recently acquired a rather lovely new item: a photo of Prime Minister Julia Gillard, taken by 12 year-old Sophie Deane, which now forms part of the museum’s digital collection.

Sophie, who has Down Syndrome, snapped Prime Minister Gillard in a candid moment on 4 May this year" ... read the story her on the museum's blog post from yesterday.

Sophie's Mum, Kirsten Deane, wrote this Facebook post for Down Syndrome Australia:
Today the Museum of Australian Democracy added a new photo to its collection - Sophie's picture of Julia Gillard. 
I told the story of this photo last week when I addressed the 5th Annual Pediatric Bioethics conference (I know, I know, I hang with the fast crowd). I had been asked to give a "parent's perspective" on prenatal diagnosis. I told this story because more than anything I wanted them to know that for all our medical advances, for all our knowledge - you just never know. 
For all the predictions that were made at the time of Sophie's diagnosis no one predicted that she would play a small part in the introduction of a revolutionary social policy reform that would transform the lives of thousands of people around the country. No one predicted that she would develop a love of photography (which we hope will continue to grow). And no one mentioned that she would take a photo that would one day end up in a museum. 
No one predicted these things because the truth is we all just don't know. So go Sophie - you just keep showin' em.
  • The Hoopla also reported the acquisition here.

Tuesday, 27 August 2013

PWD: 2013 Election Platform launch and Disability Q & A

People with Disability Australia invites you to attend a

2013 Election Platform launch and Disability Q & A 

withTim Ferguson and special guest panellists 
Senator Mitch Fifield, Senator Rachel Siewert 
and Senator the Hon Jan McLucas

5.30pm for a 6pm start - Friday 30 August 2013

Mercure Hotel, 818-820 George Street
Haymarket Sydney NSW

The event will be followed by light refreshments.

RSVP: Wednesday 28 August 2013

Webcast: This forum will be webcast online. If you can’t make it in person, you can still participate. You will need to register in advance for the webcast. Click here to register to access the forum online on the night.

Speech Pathology Week/Hearing Awareness Week

This week across Australia two awareness campaigns focus on closely related matters of importance to people with Down syndrome:

Hearing Awareness Week
The interactive 'How loud is it?' gauge on the home page shows you how loud everyday sounds are, and allows you to compare them - you might be surprised. Lots of other useful resources are linked from the website.

Has the person in your life who has Down syndrome had a hearing assessment in the last two years?

Hearing is one of the major determinants of speech development in people with Down syndrome.

Speech Pathology Week
... Speech Pathology Week this year is part of a larger international communication - along with some of our sister organisations around the world, SPA is working to create a year dedicated to raising awareness of communication disability – and its next year! 2014 is The International Communication Project and as a global profession, we will firmly put communication disability front and centre on the world health stage.


Bev Young is a life member of Down Syndrome NSW, and a retired Speech Pathologist. She is
seeking interest from parents of children up to 5 years of age who would be interested in attending playgroups she facilitates in Longueville. The sessions include a mix of structured activity and free play.

When: Monday and Tuesday mornings
Cost: $4
Contact: Bev Young 9418 9063

Image: © Denys Kuvaiev |

Sandy's Corner Playtime Playgroup
A play group for children with special needs, ages 0 - 5, and their families will commence at St. Andrew's Uniting Church, South Turramurra on August 6.
Tuesdays 10 am to 12 noon.
For information please call Rev. Bill Thomas: 9449 2129; 0404 151 305 

Monday, 26 August 2013

Teaching reading - busting the myths: six posts now available as a single paper

Dr Kathy Cologon's recent series of six posts, Teaching reading to people with Down syndrome: busting the myths, is now available as a single .pdf download, here.

'Creative Connections' Workshop: music therapy

Nordoff-Robbins Music Therapy presents a one day workshop run by Registered Music Therapists who have extensive experience conducting music therapy to people at all different lev els of needs.
This workshop will guide you through the various strategies available for you to enhance the quality of life and well-being of children and adults who have disabilities as well as the older adults, through music. It is underpinned by the belief that any-one, irrespective of the level of ability, can interact through and engage in musical experience. 
It is suitable for direct care workers, case managers, friends, family, team leaders, allied health professionals, carers and students in the above disciplines.

Saturday 26th October 2013

Castle Hill RSL
$220 Early Bird, before 6 September / $250 until 18 October
Follow the link to register and purchase tickets.

Contact: Belinda Burns 0247 360 240

Saturday, 24 August 2013

Weekend reading and viewing: 24th - 25th August 2013

A Letter To Our Son’s Teachers On His First Day Of Preschool
Rick and Abbie Smith, Noah's Dad, 2nd January, 2013
... I would like to take a moment to introduce you to our son Noah Smith. He is joining your class today and we are so excited for this next journey in his life. We wanted to take a few minutes to tell you a little bit about our son and let you know that we welcome any questions you may have (we’re super proud of him, and love to talk about him.) ...

How it all went Down(s) … Part two
Leecylou, A Lemonade Life, 13th August 2013
1 in 300 chance, they said. It’ll be all good, they said. Amnio Schmamnio, we said. Well here he is, our incredible little ’1′...

Cornwall, chums and chips
Tom Bachofner, The Future's Rosie, 20th August 2013
Natty is a true example of how a families love, care and belief can trample over those initial fears and so called obstacles we're led to believe are true in the early days of a Down's syndrome diagnosis. I came away from that day with such positive feelings for Rosie, oh and a recommendation for Britain's best chippy too!

Why college?
Margaret Bender, The Ordinary Life of an Extraordinary Girl, 20th August 2013
... One person even suggested I was letting down the entire down syndrome community by misrepresenting my daughter's abilities and that she really was not capable of going to college. I feel like I must have hit the big leagues to get comments like these!!!
A follow up post from Margaret Bender, in response to comments on her post earlier this week about Alex heading off to college.

Fort Lauderdale brothers take on kitchen and disability
Melhor Leonor, Sun Sentinel, 20th August 2013
Behind the countertop, one brother pulls out knives, the other quickly grabs the cutting boards. As one minces green onions, the other shells fava beans. In this kitchen, for brothers Luke and Dean Bergman, food is a family affair. But this isn't the family kitchen. The Bergman brothers work at Valentino Cucina Italiana, an upscale restaurant ... and Dean, the younger of the two, has Down syndrome.

I Am an Actress - I Also Happen to Have Down's Syndrome
Sarah Gordy, Huffington Post, 21st August 2013
I am lucky my mum is just right for me.

A Mother and Her Child in the World of Down Syndrome in Nepal
Michael Rosenkrantz, Huff Post Impact UK, 17th August 2013
... In Nepal there are few services specifically focused on people with Down Syndrome. Because of this and the goal of wanting more for Ashish, in 2006 Lalita founded the Down Syndrome Association of Nepal (DSAN). Lalita says that "If every child matters, every child has the right to a good start in life. If every child matters, every child has the right to be included. And that is so important for children with special needs" ...

Could it be a 'cure'? Breakthrough prompts Down syndrome soul-searching
JoNel Aleccia, NBC News, 11th August 2013
... when Massachusetts scientists announced recently that they’ve found a way to silence the chromosome that causes trisomy 21, also known as Down syndrome, it rocked (Jawanda) Mast – and the rest of the disability community.

Nothing about us without us
Katharine Annear, Ramp Up, 21st August 2013
... Some questions that come to my mind are: Do we want a world without certain types of people? Would we be better off as a society if certain types of people weren't born or could be altered in the very early stages of life through gene therapy? Who decides the research agenda?

23 Ways To Communicate With A Non-Verbal Child
Emma Sterland, Friendship Circle, 16th April 2013
“Just because a person can’t speak doesn’t mean they have nothing to say.” A very important reminder from a parent of a non-verbal child.

Friday, 23 August 2013

Call for journal papers on 'Inclusive Education for Students with Intellectual Disabilities'

International Advances in Education: Global Initiatives for Equity and Social Justice is a research monograph series of scholarly works that primarily focus on empowering students (children, adolescents, and young adults) from diverse education, socio-cultural, linguistic, and socio-economic settings to reach their full potential via education.

This call for papers is in regard to Vol 9: Inclusive Education for Students with Intellectual Disabilities. The themes for this volume will include:
  • Effective education and psycho-educative intervention strategies for students with intellectual disabilities as a global priority 
  • Social justice education to thwart disenfranchisement of students with intellectual disabilities 
  • Education for social justice: Advocating educational excellence for students with intellectual disabilities 
  • Educating for social justice to promote non-exploitation and advocate educational opportunity of students with intellectual disabilities 
Chapters are invited on any of the above and/or related, themes. If you would like to contribute a chapter to this volume please email an expression of interest to Natasha Magson ( Your expression of interest should consist of a title, author/s, contact details (including position, institution, e-mail and postal address), and a 500 word summary of your proposed topic indicating how this topic addresses the series and volume purpose. 

Expressions of interest should be received by 1st September, 2013. If you are unable to submit an abstract by this date but would like to contribute, please contact the editors for consultation. 

First drafts of chapters should be received by 1st November, 2013, with final drafts by 1st December, 2013.

Meet the new Up Club Co-ordinator

The great news for all our Up Club members is that we have a new co-ordinator Flavio Fernandez-Maldonado. Here is his brief introduction.
"I thought you might want to know a little about me. I’m 29 years old and I like going out, socialising and meeting people. In the past I have worked with people with disabilities, as a coach and a mentor. I enjoy playing soccer and basketball, and I really like going to restaurants. In my spare time I like to ride my push bike and walk my pet dog Paco. I like to go to the movies and spend time with my family. I also like travelling and have been to many interesting places. I hope you like the upcoming programs and I look forward to meeting you all soon."
Meet and Greet Sausage SizzleThis event is not part of the regular Up club program. It is a great opportunity for Up Clubbers, their families and friends, to become acquainted with Flavio.

Saturday 31st August
12 noon - 4pm
Parramatta Park, Area 2. Click here for map
Bring a picnic blanket or chairs. We will provide the sausage sizzle lunch.

Thursday, 22 August 2013

Opportunity for artists to gain exposure on social media

Here is a great offer from Accessible Arts, NSW peak body for the arts and disability:

Hello artists living with disability! We'd like to feature your artwork on our Facebook header.

Send images to with information about the artist and the artwork. All images will be credited and featured on our website along with a short story about the work.

The first one is up already, so don't hesitate!

Blue Grotto Project: Orange, NSW performance

Beyond the Square's Blue Grotto Project  has been at Anson St  School in Orange, and will showcase their work to the public next Friday, 30th August 2013, along with a bonus screening of Be My Brother - more information here, from Arts Out West

Wednesday, 21 August 2013

Free information sessions for families: advocacy on behalf of a family member

Family Advocacy is a state wide disability advocacy organisation that works with families who have a family member with disability across NSW.

To register and for more details including locations and dates click here.

Family Advocacy can also be reached on 1800 620 588 or you can register online by clicking here.

In the news

Disabled get help to escape home violence
Henrietta Cook, Sydney Morning Herald, 18th August, 2013
... an Australian-first initiative that provides disabled women and children with immediate funding for disability-related goods and services when they are experiencing family violence. The (Victorian) state government will provide $1 million over four years to extend the initiative following a successful pilot, which started in December 2011.

Virginia woman with Down syndrome becomes hero to the disabled
Theresa Vargas, Washington Post (local) 18th August 2013
They greeted her as a hero when she took the stage in Richmond.Just days after a Virginia judge let Jenny Hatch leave a group home and take her first steps toward independence, the 29-year-old woman with Down syndrome delivered a speech to a gathering of the Arc of Virginia.

Christine Long, Arts Hub, 14th August 2013
Increasing support for artists with a disability will be a “high priority” under the new Australia Council framework.

Zach Lester becomes first person with Down Syndrome to bike across the country
Anne-Marije Rook, Cascade Cycle Club, 13th August, 2013
This month, Zach Lester of Sonoma, California, became the first person with Down Syndrome to ride a bike across the United States.

Susan Pierce, Times Free Press, 20th August 2013
More than 4,000 students will start classes at Lee University on Wednesday, but only one will be making school history. Corey Moore, a 25-year-old with Down syndrome, is enrolled in two classes this semester, which he will audit -- or take without earning credits -- while learning with his typically developing peers.

Tuesday, 20 August 2013

'We live in remarkable times' ...

Margaret (Gary) Bender, The Ordinary Life of an Extraordinary Girl, 18th August 2013
Just like thousands of families across the country I have been getting my daughter ready to go to college. And yesterday, just like thousands of Moms across the country I put my daughter Alex on a plane to go to college ... We live in remarkable times.

Alex  is the 'extraordinary girl' about whom her mother, Margaret (known as Gary) has written the blog The Ordinary Life of an Extraordinary Girl, for several years, and the book From Grief to Celebration. This week, 20 year old Alex is starting college interstate - the beginning a whole new life. Gary has chronicled the decision making, the planning and the process of getting ready for this major transition - and Alex has been reminding her about all the changes she about to experience, including how she is not planning on ever living at home again.

The story includes reference to the less than 'six degrees of separation' that might describe the connectedness of families in which there is a person with Down syndrome, as Alex and Gary meet up with another  blogger, Susan and her daughter, April (April's Anecdotes). They first tell the Benders about the college program Alex is now entering at University of Cincinnati, and have become firm friends.

It is worthwhile reading back through Gary's posts over recent months if you are not a regular reader of the blog, to appreciate the story so far.

The Ordinary Life of an Extraordinary Girl is also a Facebook page that might interest you.

Both blogs are listed in our blogroll (see the right hand column of this page) for easy reference.

Reminder - Fathers Day photos

22nd April - that's this week! Thanks to all who have contributed - and there's room for more, so if you have something to send, please do so ...

If you'd like to contribute a photo for our Fathers Day gallery, please email it to by Thursday 22nd August

No names or caption will be posted. Just photos of Dads with their sons and daughters who have Down syndrome, that will speak for themselves (of course others can be in the photos too). Photos of Grandads and grandchildren are welcome too.


Monday, 19 August 2013

Sydney Fringe: Inside Out in Newtown

Four performers who have Down syndrome - Emma Brodie, James Penny, Josh Gray and Joanna Rix - are collaborating with dancers who do not have a disability to perform an integrated, contemporary dance piece, Inside Out, to be performed in September, as part of the Sydney Fringe 2013.

Kirsty Fromholtz and her team from the Sydney Creative Movement will facilitate the process from rehearsal through to final performance.  The process is being filmed as a part of a feature length documentary about disability and the creative arts.

Inside Out

7 pm Saturday 21st September 2013
3 pm Sunday 22nd September 2013

New Theatre, NEWTOWN
Buy tickets online
Sydney Fringe: Sydney’s independent festival for the visual and performing arts. NSW'S largest alternative arts event, a celebration of multi-disciplines such as visual arts, film, digital arts, comedy, music, theatre, musical theatre, circus/physical theatre, dance, cabaret, books, kids and family shows, poetry and special events. Highlighting suburbs on the fringe of the city - The Fringe allows you to delve into each precinct's unique cultural offerings and explores the suburbs of Newtown, Chippendale, Surry Hills, Glebe, Marrickville/Enmore, Darlinghurst, Erskineville and Leichhardt.

    Transition for carers forum: Children's Hospital, Westmead

    This forum is for parents and carers of young people aged 14 – 18 years who have a chronic health condition and who, because of a disability, will have difficulty managing their own care as adults.

    Forum: Transition for carers 
    Tuesday, 18th October 2013
    9.15am - 2.30pm 

    The Children’s Hospital at Westmead

    Transition is the period when a child moves from adolescence to adulthood. It is a complicated process for children with chronic health conditions, but is far more complex for those who have additional issues such as an intellectual disability, cognitive impairment, autism or brain injury.

    As a part of its Carers Week activities, The Carer Support Program at the Children’s Hospital
    at Westmead invites parents and carers to attend the Transition for Carers forum and expo .

    Registration is essential - to register call 9845 3590, or email

    Registrations close on 11/10/2013 - places are limited. Note: Professionals in this field may register, but will only be offered a place if all available places have not been filled by parents and carers at close of Registration. Registration is on first come basis. REGISTRATION IS FREE.

    Morning Tea and lunch provided.

    Saturday, 17 August 2013

    Weekened reading and viewing: 17th - 18th August 2013

    Don't limit me!
    Megan Bomgaars, published 30th July 2013

    Down syndrome: where we are now
    Kelle Hampton, Enjoying the Small Things, 14th August 2013
    Brett and I have noticed over the past three years that there are great peaks in her development that will last for a few weeks where there are so many new discoveries, new words, new tasks, but that there are also plateaus where she needs time to chew on what she's learned and chill out for a while. Brains need breaks, I get it. 

    Paul Sawka, Paul's Blog, 12th August 2013
    I took a vacation to get some rest and to recharge. I also wanted to experience some new things. I had never taken a cruise before and it had been my dream for many years. I saved my money and that’s what we did.

    A Parent’s Response to “On Being Tender”, 2013
    (US) National Down Syndrome Congress, 15th August, 2013
    ... We parented her just as we did our other three children but those important advances were pivotal for her life as someone with a disability. There was and still is more specialized intervention and enrichment for her needs as her journey continues ... There is a link to the original article at the foot of the page.

    Inside an Accessible Dance Session
    Sydney Creative Movement, 16th August 2013
    Sydney Creative Movement is currently working with Catholic Care on an Accessible Dance project, with a group of young adults with intellectual disabilities. Our tutor Jodie is heading up the project, working with the group to create a performance for their family and friends at the end of the year. I went and had a sneak peak at their rehearsal this week to see how they were getting on…
    Victoria Birch, Essential Kids, 16th August 2013
    We may want our kids to grow up in an inclusive society. We may want them to view people who experience disability as potential friends, work colleagues and lovers. But how do we broach the issue without singling people out as ‘other’?

    Students with disability must remain a key focus of national education reform
    Stephanie Gotlib, No Fibs - Citizen Journalism, August 11, 2013
    ... Following the passing of the Australian Education Act 2013, a new funding model will be rolled out in participating states at the beginning of the 2014 school year, with a core amount per student, and additional funding loadings for disadvantaged students. ... Let’s get this reform right for students with disability by using this unique opportunity to create an education system that provides equal opportunity, value and respect to students with disability ... Stephanie Gotlib is the Executive Officer, Children with Disability Australia (CDA), the national peak body representing children and young people with disability.

    An alternative way to tie shoes easily
    Ross Elementary PTA, 7th August 2013
    On the "wish list" of many Kindergarten, 1st grade, and PE teachers are students who know how to tie their shoes! If your little one is having a hard time mastering this skill, here is quick alternative to traditional tying.

    Friday, 16 August 2013

    Teaching reading to people with Down syndrome: Busting the myths - Myth #6: Reading for meaning

    This is the final post in this series of six - our grateful thanks to Dr Kathy Cologon for taking the time to write about her work for a wide audience, and for generously sharing it with us here.

    Myth buster #6: Reading for meaning  
    Kathy Cologon, Macquarie University

    In this series of blog posts I am addressing six common misconceptions in order to support families and teachers in providing opportunities for people with Down syndrome to learn to read. It is my hope that, by drawing together research on reading development in people with Down syndrome more people will have the opportunity to become readers.

    James reading at school with his teacher
    Reading can be a source not only of participation, choice and opportunity, but also of personal and shared enjoyment and engagement through reading for pleasure. However, if a person is not given the opportunity to learn to read then this wonderful world of reading is not available. The only way to find out how much someone can learn is to teach and keep on teaching!

    While I am writing this series of blog posts to parents and teachers, I am aware that many people who have Down syndrome may also be reading this – if you are I hope you find this interesting. You, like me, have the right to learn to read and I hope that reading is a source of as much pleasure to you as it is to me!

    There are a number of myths that may result in inappropriately low expectations and unnecessarily limited learning opportunities. In this series of blog posts I address six of these myths concerning (1)receptive and expressive language (what we say and what we understand), (2) phonological awareness and phonic decoding (awareness of sounds and applying these to reading), (3) functional reading or reading for pleasure and learning,(4) ‘reading readiness’ or (non)linear development, (5) optimal learning age and, (6) reading comprehension. These blog posts draw on a recent paper published in the Australian Journal of Teacher Education. I have included a link to the full paper at the end of the blog post for those who are interested in reading more on these topics. I would like to express my thanks to the editor of the journal for permission to use the paper in this series of blog posts. Many thanks also to all of the people with Down syndrome, families and teachers who have allowed me to share in their journeys and from whom I have learnt so much.

    In this final blog post of the series I will discuss the development of reading comprehension.

    Reading Comprehension

    Myth #6: People with Down syndrome cannot understand what they are reading.
    Reality: People with Down syndrome can understand what they read. However, appropriate educational opportunities supporting reading comprehension development are essential.

    In the past it was incorrectly assumed that people with Down syndrome do not comprehend what they read and instead recall words by rote as meaningless memorised sequences of letters – referred to as ‘barking at print’. In reality, research provides clear evidence that people with Down syndrome can and do comprehend what they read. Reading comprehension is an area, however, where people with Down syndrome may need particular support for learning. 

    One issue for reading comprehension lies with the extent to which methods of measuring comprehension rely on spoken language. It is essential to carefully consider whether the approach used for measuring reading comprehension is actually measuring reading comprehension or whether it is in fact measuring expressive (spoken) language. 

    Engaging in a wide range of meaningful, personally relevant, fun, and contextualised literacy experiences is important for all people in learning to read. People with Down syndrome often need ongoing support for developing listening and reading comprehension through meaningful and broad engagement with the world. Supporting reading comprehension development requires carefully reflecting on the activities we engage students in, to make sure that we are in fact teaching and not testing. Teaching new concepts as they are introduced is important rather that a) assuming they are understood without teaching, checking or reminding, or b) assuming that they are not understood and therefore can’t be read. Teaching strategies to check for meaning, drawing on context and clues within the text and connecting with and building on current experiences and knowledge, are important for reading comprehension.

    There are considerable negative implications if the myths discussed in this series of blog posts are perpetuated – including that the myths may become self-fulfilling prophecies. People with Down syndrome may find that developing reading comprehension skills is particularly difficult given:
    • A lack of phonological awareness and phonic decoding instruction (instruction to support development of awareness of sounds and applying these to reading) limits capacity for a person to develop the ability to read unknown words; 
    • Measurement of reading comprehension generally relies on expressive communication, which is not a true reflection of understanding (comprehension);
    • What a person knows or comprehends now is not what they are capable of learning (no matter a person’s age, the time for learning is now!);
    • Reading comprehension includes, but is not limited to, understanding a bus timetable – it is crucial for reading for learning and pleasure – but reading instruction is often limited to functional reading;
    • On the basis of assumptions regarding ‘reading readiness’ or linear development people are often held back with reading until they meet a required assessment level on a reading comprehension measure.
    People can be very frustrated and unhappy about being held back, but are sometimes not supported to express this. For example, as illustrated in a case study by Julie Hooton and Anna Westaway [LINK TO] when a learner does not reach scores required on a reading comprehension test and is therefore kept back at the same reading level, this is frustrating and demotivating for the learner. This also limits reading development.

    On the other hand, piercing the glass ceilings – or approaching literacy learning opportunities free of myths – can have very positive results. A growing body of research demonstrates that advanced reading ability is a possibility when opportunities for learning to read – including an emphasis on making meaning and on phonological awareness and phonic decoding – are provided. Case study evidence demonstrates that supporting people to continue with reading development and supporting reading comprehension along the way can be highly successful (see the case study in the paper I am drawing from for this series of blog posts [LINK TO]). This involves making connections with meaning – rather than holding a person back on reading levels.

    Providing support to enhance the development of reading comprehension is important. This requires placing emphasis on meaningful literacy experiences and linking reading to the learner’s everyday experiences and interests. 

    The last word…

    A holistic approach to literacy learning is important for all learners – including people who have Down syndrome. This requires building on the interests and strengths of the learner and engaging with quality literature, environmental print, experimental literacy and all forms of exchange of human communication through the rich experience of literacy learning. 

    People with Down syndrome commonly have a relative strength in reading, but realising this strength requires learning opportunities and appropriate expectations. People with Down syndrome can develop advanced early reading abilities, but can also learn to read later in life. People with Down syndrome can develop phonological awareness and phonic decoding skills. People with Down syndrome are capable of understanding what they read. People with Down syndrome can be exceptional readers and can engage in reading alongside their peers in inclusive educational settings. However, the continuing discrepancy between what is possible and what occurs for many needs to be addressed.  

    As Professor Sue Buckley of Down Syndrome Education International has written, “the only way to find out what level of literacy each child is able to achieve is to give him or her every opportunity to learn, with well-planned teaching activities from preschool years to adult life”. 

    For full details of the research I am drawing from see: Cologon, K. (2013). Debunking myths: Reading development in children with Down syndrome. Australian Journal of Teacher Education, 38(3), 130-151.

    Thursday, 15 August 2013

    School-Link Newsletter, August 2013 issue: mental health and intellectual disability in children

    School-Link Newsletter, Volume 4, Issue 2 (August 2013) published by the Children’s Hospital at Westmead’s School-Link project (on mental health and intellectual/ developmental disability in children and adolescents) is now available on the School-Link website.

    Highlights include:
    • Health Economics for Mental Health and Intellectual Disability by Associate Professor David Dossetor
    • Getting Students Ready for School by Michelle Hayter-Falconer and Nicole Ison
    • An Interview with Professor Les White by Hebah Saleh
    • The Medicine Cabinet: Quetiapine – a weak antipsychotic that is a great anxiolytic and excellent for acute agitation by Judith Longworth and Kenneth Nunn.
    • The National Roundtable on the Mental Health of People with Intellectual Disability: A Summary by Associate Professor David Dossetor.
    • Conference Reviews, Reviews, Upcoming Training and much more.
    School-Link Co-ordinator, Jodie Caruana says, 
    Please circulate the newsletter to your networks or anyone else who may be interested and encourage them to receive their own copy by signing up online here. 

    Library Thursday, 15th August 2013

    • Several titles from the UK Books Beyond Words series are in our library collection.  This promotional video explains why they were published, and how they can be used to support people with intellectual disabilities.  5m 53s
    • Another new resource of interest to older people with Down syndrome and their carers - This is our space: ageing with disability is a booklet newly released by Dept of Families, Housing, Community Services and Indigenous Affairs. It addresses how community organisations can welcome older people with all kinds of disabilities into their groups and activities. It is free to download in several formats.
    • Powerpoint presentations and photos from the Global Down Syndrome Foundation's Research & Medical Care Roundtable on held at the (US) National Down Syndrome Congress annual Convention in July are now up on the Foundation's website - free to download.
    • The Down Syndrome Research Foundation in Canada, currently has available three online videos on reading, Successful Strategies for Beginning Readers with Down Syndrome, accompanied by a set of free, downloadable, printable resources.

    Wednesday, 14 August 2013

    New website: Intellectual Disability and Ageing

    The content of the new website Intellectual Disability and Ageing is produced by the Australian Catholic University in conjunction with La Trobe University Australia and The University of Wisconsin-Madison.
    The Victorian Department of Human Services (DHS) saw merit in the staff health manual and the training manual developed as part of a 2010 - 2012 research project having a broader audience. ... (DHS) agreed to fund the development of a website on intellectual disability and ageing, that would include the materials used in the research project, together with additional information, exercises and links to further resources for improving support for ageing people with an intellectual disability. The peak body National Disability Services (NDS) Victoria agreed to host the website on the NDS website. (Intellectual Disability & Ageing - home page)
    While the website refers to some services and processes that are specific to Victorian health and disability services, there is much that will be useful to residential staff working in other States, making it a useful addition to the growing body of knowledge and resources available in this field. 

    The new Minister for Disability Services (NSW)

    The Hon Andrew Constance was recently moved from the position of NSW Minister for Disability Services, to become Minister for Finance and Services.

    The new Minister for Disability Services and Ageing and Minister for the Illawarra, the Hon John Ajaka MLC, takes some time out to introduce himself.

    Tuesday, 13 August 2013

    Research news update #6 for 2013

    It's National Science Week - a good time to catch up on research related to people with Down syndrome.

    UK and Europe Down Syndrome Research Forum 2013
    The Down Syndrome Research Forum is a regular event, sponsored by Down Syndrome Education International, at which researchers active in areas related to Down syndrome can meet, share ideas and discuss recent findings.

    The UK and Europe Down Syndrome Research Forum 2013 will be held at the University of Bristol on 17 and 18 September 2013. The  Forum offers a regular opportunity to share work in progress and seek support and advice from others working or interested in Down syndrome research. Researchers and postgraduate students from throughout the UK and Europe are invited to attend.

    Presentations are accepted on a variety of topics - for example, attention, speech-motor development, sleep, behaviour, early reading development, school reading interventions, memory training, language development, autism, early family communication, and more.

    Could Down syndrome hold the key to defeating Alzheimer's?
    Lachlan Mackintosh ABC Radio 612, 1st August 2013
    Could Down syndrome hold the key to defeating Alzheimer's? Queensland scientists have found a connection between the two using stem cell technology. Associate Professor, Ernst Wolvetang, from the University of Queensland's Institute for Bioengineering and Nanotechnology joined the program to explain. Audio file to download 6m22s

    DNA From Those With Down Syndrome Helps In Autoimmune Disease Research
    CBS Denver, July 15, 2013
    “People with Down syndrome get autoimmune diseases at a very high rate; almost a half of people with Down syndrome ... By studying people with Down syndrome we’ll be able to understand not only what causes autoimmune disease in Down syndrome, but also in the general population” ...

    Abide Therapeutics and UC San Diego awarded grant from Cure Alzheimer’s Fund to validate therapeutic target
    Abide Therapeutics, 16th July 2013
    “The results of this study will help better fit the pieces of the Alzheimer’s puzzle together,” said Tim Armour, president and CEO of the Cure Alzheimer’s Fund. Down syndrome is caused by chromosome 21 trisomy, which contains genes involved in Alzheimer’s disease, such as amyloid precursor protein (APP).

    Looking into Language: A Study of How Medical Students View Disability
    Rachel Cohen-Rottenberg, Disability and Representation, 26th July 2012
    In the paper “What does ‘disability’ mean for medical students? An exploration of the words medical students associate with the term ‘disability,’” Margaret Byron and her colleagues discuss a study they carried out to assess the concepts, descriptors, and images that medical students associate with disability.
    William Mobley, Global Down Syndrome Foundation Research & Medical Care Roundtable, 18th July 2013
    Basic Research Panel Presentation. William Mobley, MD, PhD, is Executive Director, Down Syndrome Center for Research and Treatment, UC San Diego.

    A fine portrait

    A portrait of Matthew Calandra, a Studio ARTES artist (who has Down syndrome), has been selected as a finalist in the prestigious Black Swan Prize for Portraiture, in Perth. The artist, Ben Rak, is a printmaking tutor at the College Of Fine Arts (UNSW) in Sydney. He choose to do a portrait of Matt after commissioning a portrait of himself from Matt last year. 

    Ben's portrait of Matt is fourth from the left, top row in this online gallery previewing the Black Swan finalists. The finalists' works will be exhibited from 20th - 30th September, 2013 in Perth.  

    Congratulations to both Ben Rak and Matt Calandra, and to Studio ARTES for introducing them.