Friday, 28 October 2016

Weekend reading and viewing: 29 - 30 October 2016

David Perry, Washington Post, 21 October 2016
“Awesome! Wow!”  It’s 6:45 a.m. on a Tuesday as these words float across the dining room table. My daughter has already finished eating, but my son, Nico, is happily listening to music while consuming an enormous bowl of Cheerios. As usual, he’s set the iPad to “Hamilton.”

My son is what professionals call “functionally nonverbal.” He can talk. He does so all the time. But you, and to some extent I, cannot consistently understand him. He has Down syndrome, and like many people with the genetic condition, his language development is generally delayed. More specifically, though, Nico also has apraxia ...

How I Got a ‘B’ in Homeschooling
Kari Wagner-Peck, A Typical Son, 26 October 2016
To be completely honest I gave myself the B. That said, we don’t actually use grades here.

Thorin and I started our 3rd year of homeschooling/unschooling* on September 3rd. Of course we learn all year long but given classes outside of the home and my schedule we do follow a more structured schedule between September and May.

I have learned eight essentials for me to be an averagely successful unschooler ...

When People Give Me ‘the Look’ After I Tell Them My Daughter Has Down Syndrome
Pepper Caruso, The Mighty, 12 October 2016
There it was again — that look. I’m sure most parents of children with special needs know “the look.” It’s the expression that conveys pity. The tight lips and furrowed brow clearly say, “You poor thing. I’m so sorry you’ve been saddled with this burden.”

... Now, 30 years later, the national consciousness regarding people with special needs has been raised and Americans are more aware. Yet, mentioning my daughter’s Down syndrome to someone new is still occasionally met with the look. I meet people regularly during my work as a background actor, and inevitably, we have down time during which we sit and wait and chat. I’ve noticed if the subject turns to our children, I’m mentioning my oldest less and less ...

A Boy, His Mom and The Truth
Dae Hingsburger, Of Battered Aspect, 7 October 2016
... He pointed at me, he knew I saw him, he didn't care, he was angry at his mom. "You were staring at him. You were. You were STARING." ...

NSW Council on Intellectual Disability e-News, October 2016
  • CID Annual General Meeting
  • Going to hospital; share your experience for research
  • Guest blog article
  • NSW CID conference video
  • Reasonable adjustment for university
  • Positive Cardiometabolic Health
  • NSW Disability Innovation Awards
  • Mental health and intellectual disability
  • Get More Skills: Hands On
  • Research
  • Events and professional development
  • Resources

NSW Disability Industry Innovation Awards

The NSW Disability Industry Innovation Awards are an initiative of the NSW Government in partnership with National Disability Services (NDS). The Awards were initially launched in 2012 and have been well received and supported by the disability sector for four consecutive years. Following the success of the Awards over the past years, NDS is pleased to call for nominations for the NSW Disability Industry Innovation Awards program for 2017.

The Awards formally recognise and reward excellence and innovation demonstrated by people, groups and organisations that make a difference in the lives of people with disability. The purpose of these Awards is to celebrate outstanding achievements made by non-government, community-based organisations and individuals working in the industry.

Nominations for 2017 awards close 21 November 2016.

All information about categories and the nomination process is here. Easy English and Accessible documents are available.

Thursday, 27 October 2016

Health matters

Improving Mental Health in Children with Autism and Intellectual DisabilityBelinda Ratcliffe (guest blogger), NSW Council on Intellectual Disability, 26 October 2016
Did you know about 70% of children with Autism have mental health issues like depression, anxiety or challenging behaviour?

Positive Cardiometabolic Health for People With Intellectual Disability resources
3DN at the University of NSW has developed a set of  resources and tools on Cardiometabolic Health for People with Intellectual Disabilities,  including postcards to take to your doctor.

Cardiometabolic health of people with intellectual disability differs from members of the general population. The resources aim to inform medical practitioners, those who work with or care for people with intellectual disability, people with intellectual disability, and prescribers of psychotropic medication on the affects on specific health conditions of people with intellectual disability.
  • Click here to download resources on a range of topics related to cardiometabolic health.
What a patient with a learning disability would like you to know
Emily Smith, British Medical Journal 2016; 355: i5296, 5 October 2016
Emily Smith has Down’s syndrome and is an Expert by Experience at the University of Nottingham. After a visit to an emergency department (A and E), she was referred to her general practitioner. Here she contrasts the interactions she had with the different healthcare professionals ...

Wednesday, 26 October 2016

People with Down syndrome

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 ...

This Aussie legend has notched up 30 years working at Maccas!
Australian Women's Weekly, 25 October 2016
Russell O’Grady is everything you want from an employee – he’s dependable, hard-working, enthusiastic, and above all loyal – so his bosses at McDonald’s have been lucky to have kept him on for the past 30 years ...

Natalie Olson's trip to Japan
VATTA Team, Canadian Down Syndrome Society, 4 October 2016
Hi everyone, Natalie here! I just got back from a trip to Tokyo, Japan and I want to tell you all about it. I had the opportunity to travel to Japan for a karate tournament with my Shintani team. I love being part of the team, we work hard together, train together and support each other ...

Duo Become First Reporters With Down Syndrome at Local News Station
Melissa McGlensy, The Mighty, 
Two Special Olympics athletes are now the first reporters with Down syndrome to work at Denver7 News, an ABC affiliate. In a weekly series, Hanna Atkinson, 21, from Littleton, Colorado, and Connor Long, also 21, from Louisville, Colorado, conduct interviews and host segments on the athletes, coaches, volunteers and families of Special Olympics Colorado. They work in the studio with anchor Eric Kahnert and out in the field with a production team ...
Inside Edition, 7 October 2016
An Oklahoma teen with Down syndrome, who was made an honorary deputy amid his battle with cancer, celebrated with his "fellow officers" as he was declared cancer-free. Cade Wegener, 13, of Berryhill, was celebrated for the second time in a year by the Tulsa County Sheriff's Office when he was declared cancer free, just months after becoming an honorary deputy ...

Elijah Mayfield doesn't let Down syndrome get in his way
Jennifer Brown, KRCGTV News, 13 October 2016
One Jefferson City man has shown there are no limits to what he can do.

When Elijah Mayfield goes to work at the State Capitol, the atmosphere seems to lighten. As a mail courier at the Capitol, Elijah doesn't let Down syndrome stand in his way.

"I deliver documents for different agencies at the State Capitol," he said with pride ...

Tuesday, 25 October 2016

Funding cuts to Community Legal Centres will impact people with disability

People with Disability Australia, posted on Facebook on 22 October 2016
Community Legal Centres help people with disability who need free legal services. The  Australian Centre for Disability Law is also the only Community Legal Centre that specialises in issues relating to people with disability and next year will have 30% of their funding removed. 
Please help us let the Prime Minister know that we value Community Legal Centres, and that people with disability more access to legal help, not less.  
Sign this petition and share it with your networks.

Lobbying for NDIS Board members with lived experience of disability

Lobbying for the continued inclusion of people with lived experience of disability on the board of the National Disability Insurance Scheme continues, with South Australian MO Kelly Vincent, who has a disability, speaking out (below), and Every Australian Counts proposing a social media campaign directed at relevant politicians, via simple online tool to make it easy to locate them :
Speculation continues that a new board for the NDIA, the agency delivering the NDIS, will soon be announced and there’s been no confirmation that the new members will include anyone with a lived experience of disability or service expertise.
Delivering massive disability reform without without those directly involved represented in its governance flies in the face of the whole philosophy of the NDIS. Anything about us, must include us. 
The NDIS agreements signed by states and territories and the Commonwealth allow state disability ministers a say in who makes up the NDIA Board. The Board needs members with sound financial and corporate skills and it needs people who directly represent the disability community. Let’s send a social media message to every state disability minister to tell them lived experience matters ...

Disability voice must be heard on NDIS Board: Dignity for Disability
Dignity for Disability MLC (South Australia) Kelly Vincent – media release, 20 October 2016

Dignity for Disability has joined the growing chorus of people with lived experience of disability calling on Federal Social Services Minister, Hon Christian Porter MP, to ensure better disability community representation on the National Disability Insurance Agency Board.

“It’s an absolute outrage that the Government is looking to appoint an eight person NDIA Board without consideration of, nor a majority of, members with a lived experience of disability personally, or understanding as a family carer,” says Kelly Vincent.

“This is the most important Board in Australia to the disability community, so excluding us is just plain wrong. Last year we expressed concern about advertising for Board members and now we uncover the real agenda – the exclusion of people with lived experience from the NDIS Board.

“The disability community is totally fed up with being told what to do by people with no life experience of the daily barriers we face. There is a saying: nothing about us without us, and without a voice on the NDIS Board, it seems there will be a hell of a lot about us – without us.

“Confidence in the Scheme has already been dented due to the complete fiasco caused by the MyPlace website upgrade crash, so we don’t need further wavering over the government’s commitment to the Scheme.

“Not a moment passes without a person with disability somewhere in Australia being abused, excluded or locked out of the community.

“Whether it’s waiting for support to shower or go to the toilet, or being denied the basic human rights the rest of the community enjoy, this is a continual daily experience for people with disability.

“I acknowledge the extraordinary contribution Mr Bruce Bonyhady AM has made in lobbying for, and establishing, the once-in-a-generation reform that the NDIS represents. Without his commitment and energy, I doubt we would have the NDIS.

“The loss of disability representation is surely in breach of the intent of the National Disability Insurance Scheme Act 2013, and I call on Minister Porter to reconsider his Board nominations,” said Ms Vincent. 

Monday, 24 October 2016

Arts news

Accessible Arts  Newsletter October 2016
  • transcripts from Arts Activated Conference
  • information on the NSW Artist with Disability Fellowship
  • launch of Front-Up disability-led Arts and Cultural Hub opening in Seven Hills 
  • events
'Focus on Ability' on Aurora TV
A SBS Australia hour long documentary about the Focus on Ability Film Festival  will air in November. An Aurora Channel (Foxtel community channel) 14 part series will screen on Sunday evenings from 23 October 2016.

Sit Down, Shut Up and Watch Film Festival 'gives people with disabilities a voice' on the big screen 
Claire Campbell, ABC News, 21 October 2016
An increasing number of South Australian people with a learning disability are turning to filmmaking in a bid to change misconceptions about disabilities ...

The Value of Art 26:15 mins
Attitude Live, 22 August 2010
In the art world they're referred to as outsider artists …they live with disability…they’ve never been formally trained. They are doing their own thing outside of the traditional art world of galleries, museums and exclusive schools ...

Research news and commentary #11 for 2016

Down syndrome mystery solved
Emma Gallimore, AMI Newswire, 26 September 2016
Scientists may be one step closer to understanding the mechanisms behind Down syndrome, according to a study published in eLife ... The study found that cells with trisomy 21 continuously act as though they are fighting an infection even when no infection is present ...

Study: Use CDC BMI charts when screening children with Down syndrome for obesity
Melissa Jenco, American Academy of Pediatrics, 14 September 2016
Pediatricians screening adolescents with Down syndrome for excess body fat should use the Centers for Disease Control and Prevention’s (CDC’s) standard body mass index (BMI) charts, according to a new study ...
Intellectual disability and Down Syndrome – common genetics?
Harry Perkins Institute of Medical Research, University of Western Australia, 22 July 2016
An investigation which aimed to understand the genetic basis for Down Syndrome has led to the identification of a gene which controls the formation of neural circuits in the brain.

New research led by Associate Professor Julian Heng, Head of the Brain Growth and Disease Laboratory at the Harry Perkins Institute of Medical Research, has identified a genetic factor which could be significant for intellectual disability as well as Down Syndrome ...

These findings were recently published in the Nature press journal, Scientific Reports:
Literature review on managing dementia
See this recent post to link to Challenges faced in managing dementia in Alzheimer’s disease in patients with Down syndrome - a literature review aimed to look at the management of DAD (dementia in Alzheimer's disease) in people with Down syndrome. 

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.