Friday, 21 October 2016

Weekend reading and viewing: 22 - 23 October 2016

5 Tips On Having A Child With Down Syndrome
Meriah Nichols, 14 October 2016
... welcoming the presence of Down syndrome into our lives, as expressed by our daughter Moxie, was not easy for us. For myself as a person with a disability, it was particularly difficult, because I was making the choice to bring her into the world, knowing full well that she would be facing discrimination and prejudice, much along the same lines that I have.

We are 6 years into this now, and while much of the initial angst feels silly to me now, we have learned some things that might be useful to other families ...

Living in the shadow of disability
Bill O'Chee, Sydney Morning Herald, 19 October 2016
In Australia in the 21st century, people with disabilities occupy a strange liminal world, at once accepted and ostracised. We have made enormous steps as a society when it comes to people with disabilities; we have given them financial support, anti-discrimination legislation, and even the opportunity to participate in sport. However we seem reluctant to give them our friendship ...

Are we sleepwalking into a world without Down Syndrome?
Tessa Prebble, The Spin-Off, October 11, 2016
Many parents make the reasonable decision to terminate their pregnancy following an in utero diagnosis of Down Syndrome. But as more sophisticated tests make it easier and less risky to diagnose early, Tessa Prebble wonders whether we’ve really thought through the consequences ...

I Thought Having A Child With Down’s Syndrome Would Ruin My Life
Lucienne Cooper, Redonline, 13 October 2016
... Nearly seven years on, Billy has confounded my expectations in the most remarkable and enchanting ways. Far from ruining my life, he has filled it with meaning and joy. He is nothing like the burden I'd feared, but is a loving little boy; cheeky, fun loving and mischievous, who adores his big brother ...

The Diary of a Not So Ordinary Boy, 15 October 2016
As you know, one if the things that is important to me is to listen to and amplify the voices of the unheard. So, with that in mind, I am proud to host this blog from Heidi, who has Down’s syndrome and doesn’t have her own blog (yet!).
Hi I am Heidi and I am 21 and I have down’s syndrome which is an extra chromosome and I find that some people are very negative towards people with Down’s syndrome because they don’t understand it and think that we are not equal. 
The things people are saying are making me cry because people don’t value us like they should ...
The murder of disabled children is often excused.
Carly Findlay, 18 October 2016
Warning: This post contains content about violence, murder and suicide related to disability.
I've been struggling reading about the alleged murder-suicide that happened in Sydney earlier this week.
... It's a tragedy too awful to comprehend. The wider disability community is hurting too. This needs to be talked about. And I have tried to write this as respectfully as possible. If this case does relate to the stress disability has on a family, then ...

Step UP! Nowra, this Sunday, 23rd

The Step UP! for Down syndrome walk is this Sunday in Nowra NSW!

Rain, hail or shine, Step UP! is part of a national celebration that recognises National Down Syndrome Awareness Week, 10-16th October.

People with Down syndrome, families, friends and community members get together to show their pride, raise awareness and have fun, all while raising funds for Down Syndrome NSW.

StepUp! Nowra
10am (for a 10.30am start)
Sunday 23 October 2016
Moona Moona Creek Reserve, Huskisson

The park has lots of big shady trees and a children’s playground, so bring a picnic rug and settle in to enjoy a relaxed day with family and friends.

We hope to see you there!

Thursday, 20 October 2016

'NDIS Board Recruiter must be replaced'

Media release from the Australian Federation of Disability Organisations (Down Syndrome Australia is a Federation member), 19 October 2016:
The National Disability Insurance Scheme (NDIS) Board Recruiter must be replaced after failing to offer up a single candidate with either a disclosed disability or lived experience of disability.” said Trevor Carroll, President of Australian Federation of Disability Organisations (AFDO) and spokesperson for Disability Australia.

This is in response to today’s article in The Australian by Rick Morton that indicated not one of the potential candidates for NDIS Board positions has either a disclosed disability or lived experience of disability.
“Disability Australia members are dismayed at the fact that not one of the candidates put forward has been identified as a person with disability or having lived experience of disability’ said AFDO President Trevor Carroll representing 200,000 people with disability.” 
AFDO first raised these concerns in its Media Release on 4th September 2015, when the Department of Social Services (DSS) advertised for Board positions without including selection criteria that placed any value on a potential Board member being a person with a disability. 
We acknowledge the need for a Board which represents a range of different disability perspectives in the disability space, most importantly people with disability. 
“The NDIS is at its heart a scheme about people with disability. It beggars belief that experience of disability is not valued when recruiting for Board positions.” Imagine the community uproar if the government decided to appoint only men to an agency focusing on the wellbeing and rights of women: this is how people with a disability will feel about these mooted changes. 
It is the Minister’s responsibility to talk to people with disability organisations about suitably qualified applicants. 
“If you want the NDIS to be a success a Board member must understand and have first hand knowledge and experience of the constituents he/she intends to serve.”

Corporate Heavyweights Replace Bonyhady in NDIS Shakeup
Wendy Williams, Probono Australia News, 19 October 2016
The so-called “father” of the National Disability ­Insurance Scheme, Bruce Bonyhady, is set to be replaced in an agency clean up, according to reports ... Shadow Minister for Families and Social Services Jenny Macklin accused Porter of using Bonyhady as a scapegoat ... for problems with the scheme that are Mr Porter’s responsibility ...

Disability group concern with NDIS board
Rashida Yosufzai, Australian Associated Press, 19 October 2016
Imagine a women's rights agency run by a board of men. Or an indigenous welfare group managed by non-indigenous people.

This is the situation that those in the disability sector say is facing them. They're concerned about changes to the board of the agency overseeing the National Disability Insurance Scheme, principally that very few of the new faces know what it's like to live with an impairment ...


lo, Cittadino!
Italian video shared on Facebook, by Down Syndrome Australia, on 9 October 2016.
“Because we want to give our best to build a better tomorrow...AND YOU?"
Spot of the Project "Io, Cittadino!", to promote the rights to participation, active citizenship and self-advocay of people with #intellectualdisabilities.
Plena inclusión Mencap Inclusion Europe People First Fenacerci - Federação Nacional de Cooperativas de Solidariedade Social
Share the video to give voice to people with disabilities! #iocittadino#disabilities #selfadvocacy

Significant development for disabled New Zealanders
Scoop, 5 October 2016
The Human Rights Commission says the rights of New Zealanders with disabilities will be strengthened this month with New Zealand’s accession to the Optional Protocol to the Convention on the Rights of Persons with Disabilities ...

Report of the Special Rapporteur on the rights of persons with disabilities (theme: disability-inclusive policies)

United Nations, 5 October 2016
The Office of the UN High Commissioner on Human Rights - OHCHR - has just made available the Special Rapporteur, Catalina Devandas's latest thematic report, focused on Disability-inclusive policies. The report is available in English, Spanish, French, Arabic, Russian and Chinese. 
"In this report, the Special Rapporteur provides guidance for policymakers to ensure that all policies and strategic frameworks, from the design and planning to the implementation and monitoring are fully inclusive of persons with disabilities. Disability-inclusive development strategies not only improve the situation of persons with disabilities, but also contribute substantially to the development of society as a whole."

Wednesday, 19 October 2016

Step Up for Down Syndrome 2016: Picton

Down Syndrome NSW would like to thank Anne Hearne and the wonderful community and businesses of the Picton area for supporting this year’s Step UP! for Down syndrome event last weekend, at the beautiful Picton Botanic Gardens.

If you would like to join us at the Penrith or Sydney Step UP! events please register here.

Education matters

While there remians much work to be done for people with Down syndrome of all ages to have access to appropriate educational opportunities, very significant developments have occurred over a single generation ... we increasingly see media reports now about college and university courses, while we continue to learn from other countries and systems, and to refine the language we use:

First cohort of Colorado students with Down syndrome starts college this fall
Jennifer Brown, Denver Post, 4 October 2016
College freshman Mia Barone’s fingers are flying in the campus library, her eyes closed as she signs the words on her study list — tomorrow, free, champion, flirting.

The 18-year-old with hot pink streaks in her hair that match her fingernails has a gift for sign language. Barone, who has Down syndrome, began learning to sign as a baby and hopes that after she graduates from the University of Colorado at Colorado Springs she will work as an interpreter or children’s sign language teacher ...

Strengthening an inclusive pathway for people with intellectual disabilities and their families - key recommendation from a US report
Catia Malaquias, SWJ Included, 11 October 2016
Although this Report was prepared in relation to the American legal and policy context – which in numerous respects is different to the Australian context which is framed by the Commonwealth Disability Discrimination Act 1992 and influenced by Australia’s ratification of the UN Convention on the Rights of Persons with Disabilities – the Report makes many points and recommendations that resonate with the Australian experience and context ...

'He ain't special, he's my brother' - time to ditch the phrase 'special needs'
Catia Malaquias, SJW Included, 15 October 2016
I am not going to beat about the bush; every time I hear the phrase “special needs” I cringe.

To be clear, I don’t usually call people out on language unless it’s offensive but I feel strongly about this; I think it’s time that this damaging phrase, and the mentality that goes with it, is put on the scrapheap.

The phrase “special needs” is commonly used as a euphemism to refer to a person with a disability (particularly intellectual or cognitive disability and more often than not, a child) or who otherwise functions in some way that is atypical.
 If you think about the use of the adjective “special”, it has become shorthand for describing places set aside for people with disability, e.g. “special schools”, “special education units”, “special workshops”, “special homes”, etc ...

Tuesday, 18 October 2016

Editorial published in The Age today

... following a weekend news report:

Federal Government's welfare reviews must put vulnerable first
The Age, 18 October 2016
... A report in The Age at the weekend that a severely disabled man who has been in state care since 1999 was ordered by Centrelink to prove his eligibility for a pension was distressing for all who read it, but of course so much more traumatic for this man and his family ...

John Livingstone Dance

Should we just allocate a whole separate page of this blog to dance? No stereotypes, but we could post links to it often ... like this new UK company:

John Livingstone Dance
John Livingstone has launched his own dance company. He has been selected to appear at the Resolution Dance Festival, at The Place, London in February 2017. You can start with a delightful short video of John performing, and explore his website for more information.
Resolution is The Place’s annual, new year festival of short live dance and performance works by emerging artists ... 2017 will be Resolution's 28th edition. It is a unique platform for artists to present their work on an established London stage, as well as offering support and guidance throughout the process, from application to post-performance.
Thanks to Down's Syndrome Association (UK) for the link.

Monday, 17 October 2016

Service, Support and Success: October 2016 issue

Service, Support and Success is a monthly international journal for direct support professionals, published in Canada. Each issue features a single substantive article focussed on a practical aspect of direct support.

As more people manage their own support via the National Disability Insurance Scheme, they will be interested in locating such good quality resources themselves, to establish good practice,  and as education and training resources for the professionals they employ.

It is available free via email subscription or through a website (link below). Here is the link to the latest issue:

In Case of Emergency, Please Read: Ideas and Strategies for Supporting People with Intellectual  Disabilities Receiving Emergency Care 
 Yona Lunsky and Jacques Lee, Service, Support and Success, Vol 5, issue 10, October 2016
Adults with developmental disabilities visit the hospital emergency department (ED) as often as some of us go to the dentist. In fact, they go twice as often as adults without developmental disabilities (DD). We all know the “drill” when it comes to the dentist, but just how much do you know about what to expect out of an emergency department visit? This article offers some practical tips about how to make emergency visits as good as they can be, and also outlines some steps we can all take to reduce the likelihood of having to go to the hospital in the first place. Because, let’s be honest; like the dentist, none of us want to go the hospital more than we have to...

Answers to FAQ’s about the journal
1) The journal is intended to be widely distributed; you do not need permission to forward. You do need permission to publish in a newsletter or magazine.

2) You may subscribe by sending an email to

3) We are accepting submissions. Email article ideas to either the address above or to
4) We welcome feedback on any of the articles that appear here.

Saturday, 15 October 2016

Weekend Reading and viewing: 15 - 16 October 2016

On the moral questions of Down syndrome
Kieron Smith, Medium, 8 October 2016
I try, when writing about things which could be construed as being informed by personal experience, to make sure that I take as an objective and balanced position as possible ... Using secondary research to back up assertions and philosophical work by people, much deeper thinkers than I could ever be, I attempt to explore the bigger questions of humanity and morality. In this I may or may not succeed. ever be, I attempt to explore the bigger questions of humanity and morality. In this I may or may not succeed ...

Sallese Gibson, ABC News, 9 October 2016
The results of prenatal testing for Down syndrome will be delivered differently, to ensure women are not swayed to terminate their pregnancies ...

My brother has Down’s syndrome. I wouldn’t change him for the world
Oliver Shone, The Guardian, 7 October 2016
I understand the desire to eradicate Down’s syndrome, but it’s sad to imagine life without these precious children and adults who bring such light into their families’ lives ...

The day Aunt Nigella rolled up her sleeves for a good cause
Rosa Monckton, The Telegraph (UK), 12 October 2016
... Domenica was at her best self at Brighton City College, where she did a two-year catering course for people with learning disabilities. An avid follower of her Aunt Nigella’s food programmes, she always enjoyed cooking and we chose the college together ...

Down’s Syndrome: A Disaster?
Emily Beckloff, Huffington Post, 9 October 2016
There are many, many families living in a way you perceive to be a nightmare.
... Families adapt and are genuinely and properly enjoying life. They’re not pretending to, or saying so for your sake, nor to convince you …

A World Without Down's Syndrome? 
BBC, 7 October 2016 (on You Tube, 56m 48s)
Documentary about Down's syndrome and the ethics of pregnancy screening, fronted by Sally Phillips. This film explores the science and thinking around the proposed new screening test for Down's syndrome and its possible availability on the UK National Health Service.

Friday, 14 October 2016

Step Up for Down Syndrome NSW 2016: Picton this Sunday

Rain, hail or shine, Step UP! is part of a national celebration that recognises National Down Syndrome Awareness Week, 10 -16th October.

People with Down syndrome, families, friends and community members get together to show their pride, raise awareness and have fun, all while raising funds for Down Syndrome NSW.

StepUp! Picton starts at 9.30am this Sunday the 16th at Picton Botanical Gardens. The park has lots of big shady trees and a children’s playground, so bring a picnic rug and settle in to enjoy a relaxed day with family and friends.

Contact Ann Herne - or register online here.  Alternatively you can help by making a donation here.

Other Step Up! for Down syndrome dates, NSW events:

If you cannot attend an event we encourage you to support those participating in the walk by making a tax deductible donation.
Links to Step Up events nationally 

Thursday, 13 October 2016

Two opportunities to have a say

Disability Discrimination Commissioner National Consultations 2016-2017:

"Shaping our future: discussions on disability rights"

Disability Discrimination Commissioner, Alastair McEwin will be conducting a national consultation which will help guide the development of his priorities and seek input from the disability community on how he can most effectively work to advance the rights of people with a disability. These consultations aim to engage with the disability community and gather information and knowledge on the extent and nature of disability discrimination and the human rights of people with disability in Australia.
  • Further information, video, and links to discussion papers and hearing dates and venues are on the Australian Human Rights Cmmission website, here. Consultations begin 21 October, in Adelaide.
  • Consultations will be held in each capital city and some regional centres between October 2016 - March 2017. Further consultation details will be held will be updated on this page and via the Commissioner's Facebook page.

Feedback on voting at Federal election is invited
People with Disability Australia posted on Facebook on 10 October 2016:
Did you vote at the recent federal election? Could you not vote? We want to hear from you either way. 
The Australian Parliament's Joint Standing Committee on Electoral Matters is conducting an inquiry into the recent federal election. 
We would like to provide them with feedback on your experience. Please share with your networks. 
If you could fill out this survey then we can have a better idea of what worked and what didn't, we will let the government know what they need to improve and what they should continue to do.
The survey will be open for 2 weeks until Monday 24 October.

Latest additions to 'events' pages

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

    Relationships and Sexuality Workshop
    Centre for Disability Studies - social skills, relationships and sexuality from a human rights perspective, values. myths and assumptions, providing sex education, duty of care. The course is targeted towards service providers, clinicians, case coordinators and educators, however anyone with an interest in the area is welcome to attend.
    9 November 2016 - The University of Sydney Camperdown

    Wednesday, 12 October 2016

    Life as Jamie Knows It: new from Michael Bérubé

    A new book from Michael Bérubé is cause for celebration, and this one, released just a week ago at the beginning of Down Syndrome Awareness Month is very welcome:

    Life as Jamie Knows It - An Exceptional Child Grows Up
    Michael Bérubé, Beacon Press, October 2016
    The story of Jamie Bérubé’s journey to adulthood and a meditation on disability in American life
    Published in 1996, Life as We Know It introduced Jamie Bérubé to the world as a sweet, bright, gregarious little boy who loves the Beatles, pizza, and making lists. When he is asked in his preschool class what he would like to be when he grows up, he responds with one word: big. At four, he is like many kids his age, but his Down syndrome prevents most people from seeing him as anything but disabled. 
    Twenty years later, Jamie is no longer little, though he still jams to the Beatles, eats pizza, and makes endless lists of everything—from the sixty-seven counties of Pennsylvania (in alphabetical order, from memory) to the various opponents of the wrestler known as the Undertaker ...
    This excerpt  published in Raw Story will whet your appetite for the whole, and might address a significant question for your own family:

    Michael Bérubé, Raw Story, 9 October 2016
    ... To that point in his life, Jamie had never experienced the death of a family member. Then, too, there is the fact that I do not often speak or think of our “spiritual” development ... But this was a form of “spiritual” development I recognized, and I immediately regretted not being more aware of Jamie’s possible needs in this respect ...
    Life as Jamie Knows It - An Exceptional Child Grows Up is available in print, on Kindle, and as an audio book.
    • Links to other books and articles by Michael Bérubé can be found in several posts here and here

    Tuesday, 11 October 2016

    'Born This Way' Season 1 on DVD

    The first season of the Emmy award-winning US TV series Born This Way, about the lives of several young adults with Down syndrome, has been released on DVD.

    It is advertised on Amazon as for multi-regional viewing.

    News and commentary on the NDIS (57)

    The official NDIS website provides access to documents, and up to date information about how the NDIS works, and NDIS events such as local workshops and webinars.

    NDIS and Me
    People with Down syndrome and/or their families and carers can join the closed Facebook Group, NDIS and Me, for discussion specifically about the NDIS and people with Down syndrome.

    Disability Loop - a way to find out more about the National Disability Insurance Scheme (NDIS). Through Disability Loop you can:
    • Find a great selection of resources relating to the NDIS
    • Find out how the NDIS is working for other people
    • Have your say about the NDIS
    • Keep up to date with news and events about the NDIS
    Disability Loop is a project funded by the NDIS. It is run by, and for, people with disability and their allies.

    NDIS verdict: daunting but worth it
    Rachel Browne, Sydney Morning Herald, 2 October 2016
    In most ways, Jordanne Taylor is a typical year 9 student. The 15-year-old loves dancing, cooking and spending time with girls her own age, watching movies and just hanging out. Until recently, these simple activities were not always easy to organise for Jordanne, who has a mild intellectual disability and is on the autism disorder spectrum. So when the National Disability Insurance Scheme became available, Jordanne's mother Debra Taylor immediately realised the potential it could unlock for her daughter ...
    Libby Ellis, InCharge, 4 Ocotber 2016
    This is the fourth post in our confusion-clearing and myth-busting series about the NDIS. Thank you to everyone who’s provided feedback so far – keep it coming!

    Here is another myth that has come through to us: People are being told that, if they choose self-management, they have to employ all their workers. Comments are also being made to people that make self-management seem the same as becoming an employer. Again, the implication here is that self-management is really hard work .

    This is wrong advice ...

    Provider portal updates
    NDIS Provider Portal Update 16 September 2016
    Starting this week the Agency is generating weekly reports on provider and participant claim analysis. The first of these reports, for the week of 5 to 11 September 2016, can be accessed on the information, publication and reports webpage.

    The Agency will aim to publish a new Weekly Payment Report Summary on the Agency website each Tuesday under the 'About Us' item on the NDIS website homepage. To access the report you will need to click on the 'Information, publications and reports' section, and locate the heading titled 'myplace portal weekly reports' ...

    National Disability Insurance Scheme: Half signed getting disability support for first time
    Miki Perkins, The Age, 19 September 2016
    Glance once at Teisha Rose; you'll see a dark-haired woman walking alongside the glossy, silvered expanse of the bay, a little terrier on a lead.

    NDIS is having a powerful impact
    Alastair McEwin, Brisbane Times, 4 October 2016
    Getting a morning coffee on the way to work is a ritual many of us take for granted. Not Jeremy, who is a young man with a communication disability ...

    Five minutes with… espyconnect brings real stories and information from the NDIS frontline
    espyconnect, 4 October 2016
    Starting Monday 11th October – espyconnect will be bringing you short and snappy interviews with people who are really living with NDIS ...

    We promise to only present real information and stories, warts and rainbows ...

    ‘Five minutes with ‘ will be posted on our Facebook page with one question and an around about one minute answer each weekday. We invite you to post any questions that you might have underneath the post and we will endeavour to get those questions answered ...

    October 2016 Information update around the National Disability Insurance Scheme
    Family Advocacy, October 2016
    Family Advocacy has conducted a survey with families around their experiences accessing and using the NDIS. We will continue to ensure real family experiences inform our systemic work ...

    Monday, 10 October 2016

    People with Down syndrome

    Meet the Guatemalan Designer With Down Syndrome Who’s Taking The Fashion World By Storm
    Ana Delfillo, Hello Giggles, 28 September 2016
    Meet Isabella Springmühl, a Guatemalan goddess with Down Syndrome taking the fashion world by storm. Since the young fashionista started designing clothes for her dolls at 6 years old, Isabella wanted to be a fashion designer. Following in her grandmother’s footsteps, Isabella applied to study fashion design in her native Guatemala but was rejected because the schools viewed Down Syndrome as a liability.
    “I graduated from High School two years ago and decided to go to University to study fashion design. It was denied to me due to my condition” ...

    Pair takes on Outward Bound
    Cloe Willets, New Zealand Herald, 21 September 2016
    Two men enrolled with Paraparaumu's Idea Services division are set to engage in what is hoped to be a life changing physical activity course next month.

    The Outward Bound Horizons course, which is designed specifically for people with intellectual disabilities, will see Paraparaumu Beach's David Ledingham and Robert Coley of Levin spend seven days alongside 10 other attendees from all across New Zealand ...

    Boy Scout with Down syndrome fights hunger
    Matt Flowers, Courier Post, 24 September 2016
    When 18-year-old Audubon High School senior Michael Arechavala set out on a mission to fight hunger this past summer, he didn't expect such an overwhelming response.

    Arechavala, a three-sport athlete and Boy Scout with Down syndrome, hoped to collect 500 items for the Logan Memorial Presbyterian Church’s food pantry. But when word got out about his food drive, the community helped him knock his goal out of the park ...

    Ryan Partridge - College Life
    Liz Plachta, Ruby's Rainbow, 13 September 2016
    My name is Ryan Partridge and I am 20 years old. I go to school at Barnabas Prep in Branson, MO. I love my college. I loaded up my parents car and moved in to my dorm room ... This year I will learn more job skills. I am excited to live on my own and work a job that I love.

    World Mental Health Day: 10 October

    Today, 10 October, is World Mental Health Day. NSW Council on Intellectual Disability on Facebook published a timely reminder of it's print resources on 5 October 2016:
    Worried. Sad. Angry. Scared. Upset. 
    We all have these feelings sometimes. If these feelings last 2 weeks or more or keep coming back it maybe a mental health issue. 
    NSW CID has Mental Health Fact Sheets - good info and and great conversation starters around what can be a sensitive topic. 
    Ask CID can also help with information and referral to Mental Health services 
    Ph 1800 424 065 
    Mental Health Day is near, so maybe it's time to check in on your Mental Health or the health of someone you know.
    Down Syndrome NSW resources on mental health in people with Down syndrome
    NSW Mental Health Commission: October is Mental Health Month
    Mental Health Month NSW is part of a national mental health promotion campaign held throughout October each year. The timing of the campaign centres on World Mental Health Day, which is marked each year on October 10. 
    For further information visit the Mental Health Association NSW website.

    Friday, 7 October 2016

    Weekend reading and viewing: 8 - 9 October 2016

    Tough Love
    Australia Story, ABC TV, 3 October 2016 (30 m)
    Available on ABC iview until 8.30pm 18 October 2016

    On my soapbox: Marriage and pre-natal testing
    Alex McAuley The Life That Max Built, 6 October 2016
    In Australia, a young couple with Down syndrome has recently been the subject of 'Australian Story', an excellent television program that broadcasts documentaries of ‘ordinary’ Australians living ‘extraordinary’ lives ... In the UK, a medical breakthrough in pre-natal testing has stimulated debate on the subject of termination of foetuses with Down syndrome (DS) ...

    Both of these subjects are controversial, complex and very close to my heart. Max is in a long term relationship (more than three years) with his delightful girlfriend – who also has DS – and they, too, want to get married. Max adores children, and has said he would love to have babies of his own ...

    Couples with Down syndrome don't need to be sterilised, they need support
    Claire Pullen, Sydney Morning Herald, 6 October 2016
    One good thing about moving out of home at 20 was ending the excruciatingly awkward parental interactions about sex, and boyfriend-sleepovers, and having to hear my parents' views on the above (firmly against).

    Luckily for me, though, one thing they never did was go on national television to speculate about how to have me sterilised ...

    People with a disability don't need to be sterilised. They need to be supported
    Naomi Chainey, The Feed (SBS), 6 October 2016
    ... Like Michael and Taylor however, I have a disability which would impact considerably on my ability to adhere to societal parenting norms. No doubt if I popped one out, I’d need a lot of help from my family. I might even turn to my local council or the NDIS for whatever support was available. No one would question it much, because unlike Michael and Taylor, I am not infantilised. My reproductive freedom is not inhibited by double standards.

    The pervasive idea that people with Down Syndrome are children in adult bodies needs to go. Adults with intellectual disabilities are adults, grappling with all the same emotional and sexual needs the rest of us are dealing with, and with all the same inherent rights the rest of us hold ...

    An Unexpected Motherhood – the story of a woman with Down syndrome who has a child of her own
    Leticia Keightly, Embracing Wade, 3 October 2016
    Times are changing rapidly for people with Down syndrome as every year more and more parents are encouraged to have high expectations for their children and presume competence for their abilities. Despite this, it is still mostly assumed that people with Down syndrome are unable to have children of their own. Many parents have been told that males with Down syndrome are generally sterile or their fertility is so low that they cannot conceive. There are often concerns that the person will not have the capacity either mentally or physically for parenthood. As a result, there are controversial discussions around the rights of people with a disability to make their own informed choices about the control they have over their lives and bodies versus the parent’s need to protect their children from circumstances that may harm them ...

    They're Not All Like Her You Know...
    Hayley Goleniowska, Huffington Post, 3 October 2016
    No-one has ever once said to me that not all 12 year olds are like our eldest daughter. She's exceptional and unique in ways that make us brim with pride as most parents do about their offspring ... Now, our 12 year old has a younger sister. She has her own strengths that we are proud to celebrate. She's hilariously funny with a dry wit that can dissolve a room into giggles in seconds ...
    She also has an extra chromosome. And for some reason this leads people to say, "Ah, but they're not all like her you know." They say it a lot.

    But Think About the Siblings. (Don’t Pity Us)
    Becky Saunders, The Sussex Girl, 4 October 2016
    ... We know and understand her needs, we know how she ticks, what she loves to do. We’ve seen her at her happiest and at her most sad. We’ve watched her perform on stage and we’ve celebrated exam success. We’ve helped nurse her and we’ve been nursed by her. She’s our sister and she brings strength, light and colour to our lives. Don’t you dare call her a burden ...

    Scrapheap Adventure Ride: Wrap Up, thanks ... and congratulations

    A huge hats off to Perry Gilsenan himself who founded the Scrapheap Adventure Ride. He has sustained it very successfully for 7 years (and is working on the 8th already), tapped into his hugely supportive adventure biking community, and raised more than $500,000 for the work Down Syndrome NSW!

    Here is his 'Wrap Up' of the 2016 event held last weekend, posted to the Scrapheap Adventure Ride Facebook page yesterday:

    Well as the ‘mud’ settles after Scrapheap 7 its time to reflect on this year's great event.

    • We had 102 bikes registered – our biggest year 
    • We have over 150 including kids for dinner on Saturday night!! 
    • We have raised $95,535 for Down Syndrome NSW (bringing the total raised by Scrapheap Adventure Rides to over $500,000!) 
    • This is our biggest Scrapheap Adventure Ride yet!!
    Firstly, thank you to all who participated including those who were unable to come due to unforeseen circumstances. You are all part of this success!!!

    The fundraising effort for 2016 is very, very close to its target
     of $100,000 and has taken the 7 year Scrapheap Adventure
    Ride total over half a million dollars!
    Scrapheap Adventure Ride 2016 My Cause page

    Big thank you to Anita, Ken and team at Four Corners Farm Stay!! Given the extremely wet weather leading up to the event, Anita bravely put her hand up to be our Plan B. Their generosity and hospitality was remarkable!!! So many Scrappers have commented to that effect. If anyone is looking for a ride destination, we can highly recommend them!!!

    We feel for Justin and Julie of Kallara Station – Tilpa, who made the difficult and correct call to defer to Nymagee. They were really looking forward to the Scrapheap being there. We will try again in the coming years!

    To have to relocate Scrapheap Adventure Ride in less than 3 weeks was a massive undertaking. Scott Bridges and Claire from Down Syndrome NSW were totally committed to this task and worked so well as a team to make it a success.

    The UP ClubThe welcome team from the Up Club manned the welcome tent in rain and then sunny and windy Friday afternoon and provided a Noisy Happy welcome to the riders. Thank you all for being part of the Scrapheap Crew!!

    Scrapheap Adventure Ride 8
    We have locked in our dates for 2017 but have yet to finalise the location. Keep an eye on Facebook and our web page.

    I am humbled by the support and continual growth of Scrapheap Adventure Ride each year. It’s an absolute honour to organise and attend an event with such an awesome group of generous people!!


    Scrapheap Adventure Ride Facebook page - check in here for the complete list of teams and the many sponsors of the event, many more fabulous photos and videos.

    Thursday, 6 October 2016

    Down Syndrome Australia calls for better information to support new pre-natal testing

    Statement from Down Syndrome Australia5 October 2016

    Down Syndrome Australia welcomes the current discussion in the media about pre-natal testing, prompted by the release of a BBC2 UK documentary involving British actress Sally Phillips who is the mother of a child with Down syndrome, exploring issues around pre-natal testing for Down syndrome.

    Over the last few years the capacity to test for genetic conditions such as Down syndrome before birth has increased. It is now possible to detect various chromosomal conditions pre- natally through a blood test also known as a non-invasive prenatal test (NIPT).

    It is the view of Down Syndrome Australia that this advance in medical technology must be accompanied by appropriate information to support families in making informed decisions about testing and how to respond to the results. Feedback from the Down syndrome community suggests that in most cases the information provided to families is out-dated or focused on a very negative portrayal of what it is like to have a child with Down syndrome.

    “It is critical that decision-making following a diagnosis of Down syndrome is informed by accurate and relevant information and made freely after active consideration of one’s own values and beliefs” stated Angus Graham, Chairman, Down Syndrome Australia.

    Down Syndrome Australia is a non-profit organisation whose primary aim is to represent and progress the needs, interests and aspirations of people with Down syndrome and those who support them throughout Australia.

    Since its establishment, Down Syndrome Australia has worked closely with its member organisations, the eight State and Territory Down Syndrome associations in Australia, on issues related to pre-natal testing including by developing a national resource available on its website, to ensure that expectant parents in Australia are provided with contemporary, balanced and up-to-date information about Down syndrome and prenatal testing.

    Down syndrome Australia will continue to advocate for better pre-natal information and support as part of its commitment to improving the lives of people with Down syndrome throughout Australia.

    Health matters

    Adult Down Syndrome Center, 21 August 2016 (on Facebook)
    We periodically get asked about the use of trampolines by people with Down syndrome. Recreational use of trampolines is associated with significant injuries.
    The American Academy of Pediatrics recommends against the use of trampolines for recreational use. The policy statement on trampolines  reports that "Many reports have revealed that head and/or neck injuries accounted for 10% to 17% of all trampoline-related injuries, and 0.5% of all trampoline injuries resulted in permanent neurologic damage". 
    The laxity of the joints often found in people with DS could put them at even higher risk. Of particular concern is the possibility of neck injury. Atlanto-axial instability (the slippage of the first vertebrae in the neck on the second) is more common in people with DS. A blow to the head or a sudden jarring movement of the head that might occur on a trampoline could cause spinal trauma. 
    Would a normal lateral cervical spine (neck) x-ray guarantee that a neck injury would be avoided with participation on a trampoline by a person with DS? People without DS who have normal cervical spines can have significant spinal cord injuries on a trampoline. Furthermore, we know that normal x-rays don't predict lack of vulnerability to cervical spine injury for people with DS in some other situations such as when under anesthesia. Caution is recommended for all people with DS when under anesthesia because movement of the head/neck under anesthesia has been associated with significant injury to the spine even with a normal neck x-ray. As in people without DS, even with a normal lateral neck x-ray, spine injury is still a potential concern for people with DS who participate in recreational use of a trampoline.
    Challenges faced in managing dementia in Alzheimer’s disease in patients with Down syndrome
    Vee P Prasher, Hassan Mahmood, Madhumanti Mitra, Dove Press, 20 September 2016
    ... This literature review aimed to look at the management of DAD (dementia in Alzheimer's disease) in people with DS. The management of dementia is holistic ... The management of DAD in people with DS does present with a number of challenges. However, if clinicians follow good clinical practice guidelines, optimum care can be provided to these under-resourced members of the community. Future research findings from the general population should be applicable to the DS population and will hopefully improve future management and diminish any challenges.
    • Dove Medical Press, based in the UK, publishes scientific and medical research with open access. A copy of the full text of this article, published in the journal Degenerative Neurological and Neuromuscular Disease, Volume 6, 2016, can be downloaded for personal use - the link is located below the abstract.
    Do you know someone who has a disability and has been affected by breast cancer?
    Breast Cancer Network Australia (BCNA) wants to provide better information and support to people with a disability affected by breast cancer, their families and supporters.

    To help us understand people’s experiences, we would like to talk to:
    • people with a disability who have had breast cancer
    • family members, carers or support workers of a person with a disability who has had breast cancer
    • people who have had breast cancer and are family members or carers of a person with a disability

    Wednesday, 5 October 2016

    Down Syndrome Australia: new CEO appointed

    4 October 2016

    We are very pleased to announce that following an extensive search process, Dr Ellen Skladzien has been appointed CEO of Down Syndrome Australia (DSA).

    Dr Skladzien has extensive experience in advocacy, leadership and strategic management positions within the not-for-profit sector. She has expertise in driving change in the disability, health and aged care system through evidenced-based advocacy.

    Ellen most recently was the Senior Executive Manager of Policy, Programs and Communications at Alzheimer’s Australia. During her time at Alzheimer’s Australia she has led the advocacy work of the organisation which resulted in dementia being recognised as a national health priority, funding for improvements to the health care system for people with dementia, and most recently support for a program to tackle social isolation and stigma associated with dementia.

    Ellen has a Master’s degree in Clinical Neuropsychology and a Ph.D. in Cognitive Psychology from Washington University in St Louis. She has published in peer-reviewed journals and been a lecturer for courses in Statistics, Experimental Psychology and Developmental Psychology.

    “We are thrilled to have someone of Ellen’s background, skills and capability join us at DSA. Ellen is passionate about ensuring that the voices of people with lived experience are at the centre of the work she does”, said Angus Graham, Chairman of DSA. At Alzheimer’s Australia, Ellen led a number of initiatives to support people with dementia to set priorities and strategy in advocacy, programs and research including setting up the first Consumer Dementia Research Network in Australia.

    Ellen, who will start with DSA on the 17th October, is currently based in Canberra and will re-locate to Adelaide in December. She is married to Tom and together they have two young children, Lilah who is 17 months, and Emy who is 4 years old.

    uni 2 beyond: Open Day

    uni 2 beyond supports people with an intellectual disability to study courses for interest and take part in university life. Studying for interest is also called “auditing”.

    Classes will begin in March 2017 and you can take part for 2 years, with a possible extension to 3 years.

    Who can apply: People with an intellectual disability who would like to experience university.

    How to be part of the Open Day and apply for uni 2 beyond: 
    • Register to come to our Open Day on 31 October 2016  at Sydney University, Camperdown, and learn more about uni 2 beyond. You can bring a friend or support person if you like.
    • You can apply for a place after you have attended the Open Day. Please note that there are only limited spaces available. 
    • Please read the information in the Information Pack to decide if uni 2 beyond could be right for you. 
    • If you would like to come to the Open Day, please send us the Registration Form on page 7 of the Information Pack
    • You can email Jemima at if you have any questions. 

    Tuesday, 4 October 2016

    Calling all writers with a disability

    Telescope is an annual writing prize for writers with a disability. It is run by Scope’s Communication and Inclusion Resource Centre.

    Who can enter?
    • Anyone with a disability can enter. There are sections for:
    • Adults (over 18 years of age)
    • Young writers (12-17 years of age)
    • Groups
    What can you submit?
    • There are three categories in Telescope:
    • Non-fiction: Including autobiography, essay, historical writing etc.
    • Fiction: A short story or part of a novel
    • Poetry: For all the poets out there!
    Entries close 17th October 2016

    You will find further information and an entry form on the Scope Australia website, here.

    International news and perspectives

    Catia Malaquias, director of Starting with Julius and the Attitude Foundation - two Australian organisations seeking to change attitudes to disability through media initiatives - and a director of Down Syndrome Australia, is currently at the United Nations in Geneva, to deliver an address at the launch of the Global Alliance for Disability in Media and Entertainment (GADIM).

    The alliance 'was created to encourage actions to increase and improve representation of persons with disabilities in the media. Here you will find resources to help create more inclusive media productions' ...

    The full text of Catia's speech (3 October 2016) can be read on the Starting with Julius website, here
    ... In my view, the positive engagement of the media in the realisation of human rights for people with disability is as critical and could be as powerful as the social implications of the right to inclusive education – as recently amplified by the Committee of the Convention of the Rights of Persons with Disabilities. 
    Only with the concerted, sustained and positive engagement of the media can social inclusion of people with disability and the realisation of their human rights occur in a proximate timeframe. It takes much longer to change habits than to form them – people with disabilities have been habitually excluded for centuries ...
    Out of sight: the orphanages where disabled children are abandoned
    Naomi Larsson, The Guardian, 26 September 2016
    NGO Disability Rights International has campaigned for institutions to be closed for years but despite progress, there are still shocking instances of abuse ...

    Women and girls with disabilities are equal rights holders, not ‘helpless objects of pity’ – UN rights committee
    United Nations News Centre, 30 August 2016
    ... “Policies for women have traditionally made disability invisible, and disabilities policies have overlooked gender,” said Theresia Degener, a member of Committee member in a news release issued by the Office of the UN High Commissioner for Human Rights (OHCHR).

    “But,” she added, “if you are a woman or a girl with disabilities, you face discrimination and barriers because you are female, because you are disabled, and because you are female and disabled.”

    To address this issue, the Committee has issued guidance for the 166 states that have ratified the Convention on the Rights of Persons with Disabilities to help them empower women and girls with disabilities and to enable them to participate in all spheres of life on an equal basis with others, as set out expressly in Article 6 of the Convention ...
    Lurie Institute for Disability Policy spotlights healthcare inequities for women with intellectual disabilitiesJulian Cardillo, Brandeis Now, 30 August 2016
    Why is it that nearly half of women with intellectual disabilities are not receiving the appropriate medical care they need and deserve to detect cervical cancer?
    Life with a disability in Britain 'has not improved since the London Paralympics'BT, 5 September 2016
    The majority of people with disability polled said there has been no change in the way others treat them.  Four out of five disabled people don’t think Britain is a better place to be disabled since the London 2012 Paralympics.

    In a poll of 1,000 disabled people more than 70% said there had been no change in the way people act towards them, including the way people talk to them, language people used, and the awareness people had of their needs ...

    (UK) Disability hate crime convictions surge by 40 per centJon Stone, The Independent (UK), 9 September 2016
    Prosecutions for disability hate crimes surged by more than 40 per cent last year compared to the year before, official figures show ...

    Monday, 3 October 2016

    Down Syndrome Australia Statement on Australian Story, 3 October 2016

    Down Syndrome Australia is the peak organisation for people with Down syndrome in Australia. A key part of our work is raising awareness and understanding about the rights of people living with Down syndrome.

    ABC Australian Story is airing a story on Monday night about two adults with Down syndrome who have chosen to marry and live together. The story also covers the very personal decision of these two people about whether or not they will have children and their family’s response to this decision. Down Syndrome Australia will not comment on the details of this specific family situation and the complex and deeply personal decisions that are being considered. 

    Down Syndrome Australia believes that people with Down syndrome should be supported to have the same rights, responsibilities and opportunities as other people in the community, including in making decisions about who to marry and whether or not to have children. 

    The UN Convention on the Rights of Persons with Disability Article 23 specifically protects the rights of people with disabilities to make decisions about whether or not to have children. People with Down syndrome may need additional support and appropriate information before making a decision about whether or not to have a child. 

    This may include consideration of what services and support will be available after the child is born and how they will meet the needs of a child. These are the same issues that people without a disability also need to consider before deciding to have a child. 

    Families may not always agree with the decision of the person with Down syndrome but as adults they have the right to make that decision regardless. 

    More information about the work of Down Syndrome Australia and the contact details for local support and services can be found at

    Media Contact: Angus Graham OAM, Chairman, DSA. 
    mobile: 0434 079 702

    World Down Syndrome Congress 2022: Brisbane.

    An exciting announcement from Down Syndrome international:

    Following receipt of a number of excellent applications to host World Down Syndrome Congress (WDSC) 2021, the Board of Down Syndrome International (DSi) has agreed to revert to a 2 year cycle for the WDSC, with effect from 2020. 

    There were compelling reasons to accept the proposals of Emirates Down Syndrome Association, in the city of Dubai, United Arab Emirates and Down Syndrome Australia, in the city of Brisbane, Australia. Following consultation with these parties,

    WDSC 2020 will take place in Dubai and WDSC 2022 in Brisbane.

    DSi looks forward to working with Emirates Down Syndrome Association and Down Syndrome Australia and further announcements will follow in due course.
    • For further information about the World Down Syndrome Congress, please visit the DSi website.
    • For information and to register for WDSC 2018 in Scotland, please visit this website
    • You can also keep up with Down Syndrome International activities through the Facebook page.

    Friday, 30 September 2016

    Weekend reading and viewing: 1 - 2 October 2016

    Australian Story: ABC TV, 8 pm Monday 3 October 2016

    When Michael Cox and Taylor Anderton, became an item, their parents were delighted their adult children, who both have Down syndrome, had found love.

    But when the couple, both in their early 20s, started talking about weddings and babies, their parents became alarmed ... 
    (Australian Story)

    My Heart Can’t Even Believe It: A Conversation with Author, Amy Silverman
    Kari Wagner-Peck, Huffington Post, 30 September 2016
    Amy Silverman is a journalist and blogger I have long respected. We are kindred spirits in that we both write about our children who have Down syndrome for readers that include people who don’t. We have also both written books about our experiences ...

    Sally Phillips: My son has Down's syndrome - but I wouldn't want to live in a world without it

    Elizabeth Day, The Telegraph (UK), 29 September 2016
    ... Phillips also has a serious side. Next week, the BBC will air a one-hour documentary which she presented and co-wrote, entitled A World Without Down’s Syndrome? The programme examines the issues around Down’s Syndrome with intellectual rigour but is also extremely moving, largely because of Phillips herself who made the decision to include Olly in the film. He emerges as a chatty, engaging and kind little boy who often has his younger siblings, Luke, nine, and Tom, four, in hysterics ...
    • You can view a  BBC interview with Sally Phillips (by Frank Skinner) via the Don't Screen Us Out Facebook page, dated 23 September 2016 (we cannot view from BBC page from outside UK)
    • We will be watching for the documentary on Australian TV - let us know if you spot it in a TV guide.

    Putting kids with special needs in ads isn't just about making moms feel good
    Maureen Wallace, She Knows, 19 September 2016
    ... My son has Down syndrome, and seeing diversity in advertising fills my heart as much as it empties my wallet. But while companies that practice diversity in advertising may be driven by sales, the social benefits are life-changing.

    My child needs to see himself reflected in the world, and the world needs to see my son and people who share his differences reflected in the barrage of images hitting us daily ...

    Spotlight on non-invasive prenatal testing
    Chris Kaposy, Impact Ethics, 8 September 2016
    ... Canada should learn from the United States’ failure to regulate the industry for Non-Invasive Prenatal Testing ...

    Down Syndrome NSW Annual General Meeting 2016

    Members are welcome to join us for the Down Syndrome NSW Annual General Meeting which will be held at at 10.00 am on Saturday 29 October 2016.

    Our Guest speaker will be Evelyn Scott who will be talking to us about the latest international research. 

    There is also a proposal to amend the Constitution of the Association at the AGM - details of the proposed changes are here.
    10am Saturday 29 October 2016 
    SMC Conference Centre66 Goulburn Street, Sydney, NSW
    Board Nominations
    Nominations are now open to join the Board of Down Syndrome NSW.

    To nominate for a board position you must be a paid up Member of the Association. To nominate for the position of President or Vice President, you must be an Ordinary Member.

    To nominate complete the below nomination form and return to Emily Wu (the Returning Officer) via email at or via mail to
    Emily Wu
    PO Box 3173
    North Parramatta NSW 1750
    Nominations close Friday 14 October 2016 at 5.00 pm sharp.

    Thursday, 29 September 2016

    Latest additions to 'events' pages

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

      Focus Sydney on disability
      Focus on Ability Film Festival and NOVA Employment - series of film screenings and information sessions, showcasing some short films and documentaries, and providing information about transitioning from school to employment for students with disabilities. For students with disbaility, families and teachers. Free, RSVP by 14 October essential: Donna 02 8886 5802 or October 2016 - Penrith
      21 October 2016 - Richmond
      24 October 2016 - Parramatta
      25 October 2016 - Campbelltown
      26 October 2016 - Cronulla
      27 October 2016 - Hornsby

      Art Safari 2016  Exhibition
      Challenge Community Services Art Competition is designed to allow people with a disability, living in NSW, the opportunity to further enhance their individualism, independence and status within the community through the expression of art.The selected artworks will be exhibited at Ray Walsh House, 437 Peel Street, Tamworth
      1 -14 December 2016 - Tamworth