Weekend reading: 30 -31 January 2016

Agent Carter > Born This Way

David M Perry, How Did We Get Into This Mess? 22 January 2016

Born This Way was the new Down syndrome reality show that aired over December and January. I wrote a review of it here as basically fine TV limited by its artificial format.

Here, though, is a really detailed essay on the show including, wonderfully, interviews with self-advocates about watching it. Opinions, of course, vary widely, no one is really upset by the show (nor should be), but not everyone is deeply moved or think it's transformative. Here's my favorite interview ...

Please Don’t Praise Me for Loving My Child With a Disability

Ellen Stumbo, 26 January 2016
It happens to most of us as we parent kids with disabilities, we hear statements like, “You are amazing, I could never do it.” “It must be so hard.” ...

‘My biggest act of rebellion as a disabled person is living as I wish’

Mary O'Hara, The Guardian, 27 January 2016

Zara Todd recalls two incidents from her schooldays that prompted her at an early age to campaign for the rights of children and young people with disabilities ...

Am I spoiling my child or accommodating his special needs?
Not the Former Things, 19 December 2014
... What I am expecting to hear, is that I am spoiling him. What I am sure she will say, is that I am too soft, too enabling, and too mothering. I am confident she will question how we educate, medicate, and communicate with him. And I can already feel the shame creeping in, as I think about her questioning his media time, obsession with Minecraft, and lack of exercise ...

4 Ways to Help Your Child With Special Needs Find Meaningful Employment

Scott Monette, Friendship Circle, 26 January 2016

My son Matt is living with a disability, and as he transitions from high school, he’s exploring what it means to be an adult. Matt, like so many people with disabilities, wants to contribute to society, and he’ll thrive in the right career.

As a parent, it’s my responsibility to help him find it. But finding his right fit will require knocking on doors, embracing opportunities and keeping a positive outlook ...

Calls for investment in Australians with disability for future prosperity

These stories about National Disability Insurance Scheme funding surfaced in yesterday's media:

• Govt Looks to Plug NDIS Funding Black Hole, Pro Bono News Australia, 28 January 2016
• Wayne Swan defends NDIS funding setup amid $5bn budget hit, The Australian (might be pay-walled), 28 January 2016
• Labor rejects NDIS funding shortfall, Channel 9, AAP, 28 January 2016 

Responses:

What’s the Budget fuss?, Every Australian Counts, 29 January 2016
This week a major national newspaper led with an “exclusive” story about the costs of the National Disability Insurance Scheme. It’s a curious story given there is nothing new in it. It’s no secret that the NDIS comes with costs, which have been carefully forecast and planned for. The real story remains that the cost of doing nothing is even higher ...


Media release issued by Australian Cross Disability Alliance, 28 January 2016 :
The Australian Cross Disability Alliance is calling on the Government to end speculation about the National Disability Insurance Scheme and to give certainty to all Australians with disability.

The NDIS is an essential part of our social infrastructure that will ensure that all Australians with disability finally have the support they need. This long overdue investment in people with disability and their families will enable more people to move into work, and also create jobs in the disability support sector. Reporting on just the costs of the NDIS misses the increase to GDP from the NDIS and the other economic benefits of having more Australians able to participate in the community.

Delivery of the NDIS on time and in full was a key commitment by the Coalition to Australians going into the 2013 federal election and one that, so far, they have delivered under two Prime Ministers.

Support groups for parents of children with ID

An invitation from Northern Intellectual Disability Health and the University of Technology Sydney:

Do you have a child (up to 13 years old) with an intellectual disability?

Are you feeling overwhelmed and under stress?

Northern Intellectual Disability Health and the University of Technology Sydney are inviting parents with a child with an intellectual disability, who are experiencing stress to attend one of two different 8-week support groups. Come along to:

• Examine ways of overcoming stress
• Develop skills and implement strategies to reduce stress and its impact on the family
• Improve the well-being of yourself and your family

The groups will be run at Northern Intellectual Disability Health in Cremorne by provisionally registered Psychologists under supervision. There is no cost for attending this group. Groups will be evaluated by questionnaires completed by participants online weekly, and at the beginning and end of the study.

• If you would like further information, or to be involved in this research study, please contact us at MHITpsych@gmail.com

This study has been approved by the Northern Sydney Health District Human Research Ethics Committee, Reference: LNR/15/HAWKE/263, ratified by the UTS HREC, Reference: 2015000670.

DSAQ education conference, Brisbane

If you are in northern NSW, this Down Syndrome Association of Queensland event might be of interest to you:

Brisbane Education Conference

Thursday 25th and Friday 26th February 2016

Brisbane Convention and Exhibition Centre

(registrations close 11th February)

'This is a must attend conference for everyone working with a child or young adult with Down syndrome. It is guaranteed to inspire you to revolutionise the way you work with your students and maximise their educational outcomes. 

Teachers from early childhood, primary, secondary, tertiary and special settings, administrators, therapists and parents will network together in an enthusiastic atmosphere to share this enjoyable and informative event.'

• Full details, including a draft program, and online booking are available here. 

Every Australian Counts - 5th anniversary of campaign launch for NDIS

'Five for five', from Every Australian Counts, on the fifth anniversary of their campaign to implement the National Disability Insurance Scheme:

Today (26 January 2016), as we mark five incredible years since the launch of the Every Australian Counts campaign, we ask supporters to remind Australians why the NDIS is still so important for people with disability, and the nation. 

There are many reasons why the NDIS is a must-have reform for our country – not least because, in the words of the Productivity Commission, the current system is “unfair, underfunded, fragmented and inefficient.” 

... We knew it was needed to transform the lives of people with disability so they could live their lives to the full. 

Let’s remind all Australians why the NDIS is so important this Australia Day!

We’ve come up with the top five ways the NDIS will transform lives in 2016 and beyond

On this page, you can click one, two or all of the images below to share the ones you like on your own Facebook page.

Congratulations Team Australia, Florence 2016 !

Swimmers selected to represent Australia at the 8th International Down Syndrome Swimming Championship were announced late in 2015.

The event will be part of the World Trisome Games, taking place in Florence, Italy 15 - 22 July 2016.

Down Syndrome Swimming Australia has named a team of twenty two, including Daniel Rumsey and James Lawrence from NSW. James's brother Brandon has been appointed a coaching assistant. The team will leave Australia on 10 July.

Congratulations to all the swimmers, and the support team members - we wish you well for your training over the next few months , for your official training camp, and for your travel, as well as for the competition.

• World Trisome Games 2016 
• Down Syndrome Swimming Australia
• Down Syndrome International Swimming Organisation

Down Syndrome NSW has moved: new contact details

The office of Down Syndrome NSW has moved. The street address and postal address have both changed, but phone numbers and email addresses remain the same. Our office hours are still 9.30am to 4.30pm Monday to Friday.

We are now only one block north of Victoria Road. We are much easier to find and to get to than we have been for a while.  Parramatta train station is a 15 to 20 minute walk away and the free Parramatta Loop bus leaves the station every 10 minutes and stops almost outside 410 Church Street.  There are two council car parks nearby and on-street meter parking for up to four hours. 

All DS NSW members are welcome to come and visit any time.  If you'd like to use the Julie Cromer Resource Library be sure to call ahead and make an appointment for Wednesday or Thursday when librarian Jo See is in to assist you. 

We look forward to seeing you.

Our office

Level 6, 410 Church Street
North Parramatta NSW 2151

Postal Address
PO Box 3173
North Parramatta NSW 1750

Phone
+61 2 9841 4444  (Sydney Metro)
1800 811 629  (Outside Sydney Metro)

Emails
General enquiries:
admin@dsansw.org.au

Information, Training and Support:
information@dsansw.org.au

Library enquiries: 
library@dsansw.org.au

Social Media
Facebook:  DownSyndromeNSW
Twitter:      @DownSyndromeNSW

Website:    www.downsyndromensw.org.au

Blog:         http://keepingupwithds.blogspot.com.au

Information about our Board and staff is available on the  'About us' page on our website

Weekend reading and viewing: 23 - 24 January 2016

Questions. Email. Love
Dave Hingsburger, Rolling Around in My Head, 19 January 2016
I received an email yesterday from a young man with Down Syndrome asking me a question about relationships and sexuality ... In my mind I can see the faces of so many men and women with intellectual disabilities whose sexuality has been systematically punished and who have brutalized by prejudice masking as therapy.

We Need More Proof That Prenatal Gene Screens Are Beneficial

Juston Volsz, Scientific American, 1 February 2016
Blood tests are safer for pregnant women but do not tell the whole truth ... results from screening tests can be misleading, and industry and federal regulators are not doing enough to ensure that people get all the information they need ...

Scared and sad - a letter from a prospective parent
Paul Daugherty, Uncomplicated Life, 20 January 2016
... a prospective parent of a child with Down syndrome ... purchased An Uncomplicated Life, and wanted to share his feelings with me. When you read Mike’s letter, you might feel as if you’re reading your own autobiography ...

2015 State of the Art on Post-Secondary and Individuals with Intellectual Disabilities
Keller Institute for Human dis-Abilities, George Mason University (Virginia)

How to Prepare Students in Self-Contained Classrooms for Inclusion in General Education
Tim Villegas, Kurzweil Education, 20 January 2016
... When students spend the majority of their time in self-contained, multi-grade classrooms, they miss out on vital learning in the general education curriculum. The depth and breadth of this curriculum is simply impossible to replicate in the self-contained classroom where lessons span three to five grade levels at a time, scheduling often conflicts with therapy, and students need support for a concentrated mixture of social/emotional and sensory regulation difficulties ...

Revised growth charts available to download, print

Updated growth charts (height, weight, head circumference and weight/length) for people with Down syndrome from birth to 20 years of age are now available to download. The charts are based on data collected in a US research study published by the journal Pediatrics inAugust 2015.

These charts can help healthcare providers monitor growth among children with Down syndrome and assess how well a child with Down syndrome is growing when compared to peers with Down syndrome.

The .pdf format released by the US Centres for Disease Control and Prevention is easier to download and print than sourcing them directly from the research paper.

NDIA Specialist Disability Pricing and Payments Framework Consultation

NDIA Specialist Disability Pricing and Payments Framework Consultation

Monday, 1 February 2016 
from 9:00 AM to 1:00 PM 
Sydney Olympic Park

The NDIA is currently holding public consultation sessions across Australia to obtain feedback on the Specialist Disability Accommodation (SDA) Pricing and Payments Framework. The consultation sessions are open to any interested party, and we would welcome the attendance of participants, carers and families, as well as financiers, and those involved in developing, building, purchasing and the management of accommodation options for people with disability.


• Further information and online registration (free)

People with Down syndrome ...

About five years ago, we asked out members whose sons and daughters were adults, what they thought was different from when they were young children. Several things were identified, but the most common response was that people with Down syndrome are so much more visible in the wider community now, and how much better that is ...

Our first day
What We Say, 19 January 2016
A Few Quick Sketches, 20 January 2016
You can follow along with the RUCKUS ensemble's current adventures in Cambodia via blog posts (lots of photos) on What We Say, as well on their Facebook page

A new beginning for Kyran
Bryce Luff, Fremantle Gazette, 12 January 2016
Like many people heading into the new year, Kyran Doak was keen to hit 2016 running. For the popular 21-year-old with Down syndrome, that meant finding a new job and securing an extra bit of independence ...

Photographer has a photo duel with his daughter with Down’s syndrome, she wins
Francesca Kentish, Metro (UK), 19 January 2016
Having spent five years as a professional photographer, Sebastian Luczywo thought he’d got his photography style down. His goal was simply to tell a story in every picture and he was doing that brilliantly, receiving praise from all round the world. But when his 17-year-old daughter Kaja came back from a school trip with five photos of her own, Luczywo knew he still had a lot to learn ...
Disability? What disability? Mansfield man with Down syndrome just carries on

Rick Foster, Sun-Chronicle, 29 December 2015

Christopher LeVangie is a young man on his way up. And that's saying a lot, considering the 24-year-old was born with Down syndrome, an intellectual disability that might have held back a less determined person ...

Mother and son
NDSS, 5 January 2016
Patti White posted on (US) National Down Syndrome Society's Facebook page, a photo with a note about her daughter Lisa (50) and Lisa's son Nic (20 who both have Down syndrome.  

Down Syndrome Australia: Easy Read version of website

Down Syndrome Australia has launched an Easy Read version of their website, alongside the regular version. You can access it directly from the main home page ...

News and commentary from and about the broader disability community

Slacktivism, appearance activism and inspiration porn

Culture Club, 774 ABC Melbourne (radio), 14 January 2016

Carly Findlay, Jill Stark and Richelle Hunt discuss slacktivism, appearance activism and inspiration porn.

Parenting classes for parents of children with SEND: an open letter to David Cameron

Katherine Runswick-Cole, TES Connect. 12 January 2016

One leading expert in disability studies offers her suggestions to the (UK) prime minister on what good parenting support should look like for parents of children with SEND (special educational needs/disability) ...
(Prompted by recent UK government policy decisions, but easily translatable to other locations and jurisdictions.)

Court denies parents' bid to forcibly sterilise intellectually disabled daughter

AAP via The Guardian, 15 January 2016
Parents had raised concerns that their daughter’s friendly and trusting nature made her vulnerable to being taken advantage of sexually ...

Resolutions: In three parts

Dave Hingsburger, Rolling Around in My Head, 1 January 2016

... the discomfort left him and he spoke, not to her, but directly to the boy, whose eyes managed to answer questions and begin dialogue. She stepped away ...

Why do you never see a Lego mini-figure with a disability?

Rebecca Atkinson, The Guardian, 22 December 2015
The world’s largest toy company is excluding 150 million disabled children by failing to positively represent them in its products ...

Government efforts to tighten rules for Disability Support Pension criticised

Angela Lavoipierre, PM (ABC Radio), 11 January 2016 (Print + audio)

The Federal Government's efforts to move people off the Disability Support Pension (DSP) have been criticised as an austerity measure. More than 800,000 people who are unable to work more than 15 hours a week rely on the payment ...

Immigration - again

We know that discrimination against people with disabilities by the Australian Department of Immigration is legal - the Dept is exempt from our own discrimination law, and the 2010 Inquiry in the Immigration Treatment of People with Disabilities, while suggesting some softening of regulations, fell short of outright condemnation, and its recommendations have not been acted upon anyway.

Down Syndrome Australia commented today on Facebook, on a new article about a current case under review. 

Thanks to Suresh Rajan for writing this piece about the latest action of our federal government towards a child with Down syndrome in the name of the Immigration Act. Thanks to the Winspear family for providing the information; we wish you well in your efforts. 

As a community of people with Down syndrome, families, friends and supporters, we need to raise our voices so that this assessing the value/cost of people stops ...

"Is this what we have become? A nation that assesses the “value” of a potential entrant into this country in terms of a cost? Have we become a nation that is so economically rational that human beings are reduced to a number?  

Even if we wanted to examine the cost to us as taxpayers (and I will state categorically that I am opposed to the very concept of that) the very least we could do is assess the productive capacity of this young girl and the value she may bring us in the future."

• Bastadry in Australian migration – particularly in relation to disability, Suresh Rajan, The Stringer, 19 January 2016

 Perhaps not so much 'is this what we have become?', but 'is this where we still are in 2016?'

• Previous posts on immigration law and practice in Australia, and people with disbaility

Some resources for the new school year

... because you know the 2016 school year is just a week or so away in NSW!

A letter to my child's teacher for 2016

Sam Paior has set up The Growing Space, providing 'Independent Disability Support and Advocacy for Families in South Australia, as well as training and engagement support for DSO's. ' 

Many of her resources are useful way beyond South Australia. A letter to my child's teacher for 2016 was shared on Facebook on 13 January 2016 ... 'Here's a draft for you to cut and paste and edit as you like. It's just a starting point, but might give you some ideas!'

Helping children with Down’s syndrome to learn
Gillian Bird, SEN Magazine (UK), 2015

... a useful guide to help teachers understand the learning profile associated with Down’s syndrome.

Students with Down syndrome in primary education in the Netherlands: regular or special?

Gerrit Willem de Graaf, FRANN, 2014

An infographic comparing inclusive and segregated education.

Resolutions for the inclusive classroom
Paula Kluth, 4 January 2016

An organising resource designed for classroom teachers, with suggestions for goals to promote inclusion.

Down Syndrome NSW Education Conference 2016:

EMBRACING SUCCESS - Realising the Potential

17 - 18 March 2016

Registration is now open

Australia Council: Arts and Disability Funding

An opportunity for artists with disability to apply for grants to pursue projects and practice in 2016.

Australia Council for the Arts: Artists with disability funding

Artists with disability funding provides support for artists and groups who identify with disability. For 2016, applications close on 2 February 2016. There is only one closing date for this funding round in 2016. Applications will be available again in 2017.

• Further information on applying

Report released:Australian Senate inquiry report into education of students with a disability

You might have seen reference to the release the report of a Senate inquiry into the education of students with a disability in the mainstream press over the weekend. While it is still the long school holidays (here in NSW at least), it might an ideal time to look at what the report could mean for our children, and issues to look out for,  and to seek solutions:

Australian Senate inquiry report into education of students with a disability - a brief review

Catia Malaquias,  Starting with Julius, 17 January 2016

... In my view a noteworthy recommendation is that the Commonwealth government should work with the States to establish a national strategy that recognises all students with disability as learners and to “drive the cultural change required to achieve this, particularly at school leadership level”. The importance of school culture to the effectiveness of inclusive education and inclusive strategies is often under-appreciated – but the Committee clearly recognised the adverse isolated and combined effect of numerous cultural limitations ...... (The) Committee in acknowledging “the question of which sort of education produces the best outcomes for students: inclusion in ‘mainstream’ schools or classes or via special-purposes schools” also acknowledged that “the weight of evidence is firmly on the side of mainstream inclusion” ...

Government must address barriers that hurt students with disability: ReportSenator Rachel Siewert (Greens, WA), 15 January 2016

Inadequate support and numerous barriers are impacting levels of access and attainment for students with disability in Australian schools, a Senate Committee report has revealed today ...

Australian schools failing children with disabilities, Senate report finds

Louise Milligan, 7:30 (ABC TV), 15 January 2016

Students with disabilities are being shut out and denied a future by school systems that assume they have nothing to contribute, a Senate report into education and disability has found ... video 8m 13s

Added 19 January 2016:

NSW Council for Intellectual Disability reponse to Senate inquiry into the education of students with a disability

Down Syndrome NSW Education Conference 2016:

EMBRACING SUCCESS - Realising the Potential

17 - 18 March 2016

Registration is now open

Weekend reading and viewing: 16 - 17 January 2016

RUCKUS is a 'Sydney based disability led contemporary performance ensemble who through their original, thought provoking and powerful performances smash stereotypes and challenge audience’s preconceptions of what people with disability are capable of achieving.' Visit their brand new website to see who is involved and what their plans are for 2016, especially SPEED OF LIFE - 'an innovative new performance currently being devised by RUCKUS in collaboration with Epic Encounters an ensemble of performers with disability from Kampot, Cambodia.'

I want to be a Dr ... like the one who took her Down syndrome away.

Christen Riegel, 19 December 2015

... I also believe in encouraging my children to become anything they want. I know myself without my parents support I don’t know if I would have ever really chased my dream of becoming an artist ...

"Loss" - excerpt from Heartbreak and Beauty (2m 11s)
Bus Stop Films, 14 January 2016
Over the next few months we will be releasing various scenes of our powerful, award winning experimental film Heartbreak and Beauty. This week we're launching 'Loss', starring Digby Webster and Audrey O'Connor. Stylised movement, dance, visual metaphor and poetry are used within the scene to explore the heartbreaking emotions that come when experiencing the loss of a loved one.

Within all experimental films you can read the text and find meaning, what meaning can you find in the symbolism?

• Direct link to 'Loss' on You Tube

Obstetricians’ 2016 Resolutions for Prenatal Genetic Testing
Mark Leach, Down Syndrome Prenatal Testing, 5 January 2016
With the start of 2016, obstetricians, like everyone else, are making their New Year’s resolutions. Here are their resolutions for counseling their patients about prenatal genetic testing ...

Talking To Your Children About Disability

Anne Penniston Grunsted, Role Reboot, 12 January 2016

... It’s not that his peers are deeply insightful, able to “see past” his disability. It’s certainly not the case that young children are little angels, somehow “above” the bullying and shunning that older people fall into. The beauty of children is that they plainly see a simple truth: My son’s disability really doesn’t impact them much. Bobby is just a kid in their school, in their class, in their neighborhood ...

Seeking applicants for new TV travel series

Shared from Down Syndrome NSW on Facebook:

Channel Nine is seeking applicants to be part of a new travel series. They are interested in talking to people with Down syndrome over 18 about an on-air role.

Applications have officially closed but remain open to members of Down Syndrome NSW. Applications are for groups of 2 to 5 people and you must be able to take 12 weeks off to travel.

It’s not a competition and there is no cash prize but there is a fantastic opportunity to travel and be on a fabulous new television show as a travel presenter!

If you are interested in applying to be a presenter, click here and then click on 'Apply Now' (ignore the “Applications Now Closed” message).

#crippingthemighty - a useful debate?

In the week before Christmas 2015, disquiet and brewing hostility from some commentators about both the content and practices of the website The Mighty, a prolific publisher  and re-publisher of mostly short articles about disability, erupted in a flurry of protest (that has abated, but still continues) and some defence. Many writers with and without disabilities have weighed in - the best identify the problems and put forward solutions rather than simply complaining.

The Mighty issued a general response early on, as part of a review of its year, and having asked for feedback, has apparently continued largely unchanged:

Inside The Mighty: A New Year and New Challenges Ahead,  Mike Porath, The Mighty, 4 January 2016
... We’ve taken criticism from some within the disability community recently over who should be permitted to write and how they should be permitted to write about their experiences. Those are valid concerns. The passions of this community run deep and they are multi-layered. Our team lives with disabilities and diseases so we understand this. 

Our goal is to provide this platform for people to share their life experiences in a respectful and responsible manner. We’re discussing editorial guidelines not just internally, but with many others in the community, which will result in updated guidelines for contributors. We listen, we learn and we move forward ...

Typically, David Perry explains the problem succinctly, identifies two major problems and proposes solutions:

Two Ethical Futures for The Mighty,  David M Perry, How Did We Get Into This Mess? 22December 2015
The Mighty is a well-funded website that publishes personal essays about disability. Narratives tend to be parent-driven or illness-driven, but they throw a huge amount of content out at the internet without much editorial oversight ...

... what (they are) doing now is causing damage to the community (they) allegedly are here to support, and you can't paper those wounds over with apologies.

A good list of responses, followed up with some plain-speaking about why the criticism has arisen

Weekly reading list: 'The Mighty' edition,  Disability Thinking, 4 January 42016
This week's Weekly Reading List is devoted to the biggest thing happening in disability culture at the moment, #CrippingTheMighty.

These responses focus on how the #crippingthemighty campaign highlights the sometimes subtle (and sometimes not) different interests of children with disability and their parents:

Why is it so important for parents to listen to disabled advocates?  Michelle Sutton Writes, 7 January 2016
There is a fair bit of misunderstanding of the message from disabled advocates in the situation around the discussion involving The Mighty and its history of promoting the voices of parents of disabled children more than those of actually disabled people ... 

Six questions before publishing about children,  Lauri Swann Hunt, Ollibean, 6 January 2016
I have a wonderful family with kids who are adored and accepted for being exactly who they are, not in spite of their disabilities. My family is not tragic, burdensome, or ultra-special. The non-disabled members of my family do not possess a supernatural patience that have enabled us to escape the fate of the “special needs family” that dominates your news feeds and the neurodivergent members are not inspirational just for being. We are capable of heroic acts, but they can’t be translated into a meme that would make you feel thankful you weren’t in our shoes ...

Why I Dislike The Mighty and Better Alternatives for Parents,  We Always Liked Picasso Anyway, 22 December 2015
Many people confuse parent support with disability advocacy. Those are two separate things. This is why sites like The Mighty are so problematic. You can't complain about parenting a disabled child in the same space that you claim to want to uplift and inspire people about disability. 

'To ring in the New Year, the authors of this article present the#InspoPornResolution, a set of guidelines for better reporting and writing about the disability community':

The Inspiration Porn Resolution, Alice Wong, Liz Jackson, and R. Larkin Taylor-Parker, Medium Corporation, 4 January 2016

If you’re struggling to figure out how to write about the disability experience authentically and inclusively, check out these fantastic writers and projects ...

If you search 'cripping The Mighty' or the hashtag #crippingthemighty you will find much more.

We have from time to time sourced links from The Mighty, selecting carefully from the large number of posts for the most well-considered and relevant to our readers. As Carly Findlay suggests in her second post about #crippingthemighty, in response to recent actions by The Mighty that we will rethink using it all:

An open letter to The Mighty: being mighty outspoken means getting mightily shut out,  Carly Findlay, 12 January 2016
.. The Mighty editors have removed many of the disability self advocates (and non disabled advocates) from the very community they're trying to serve ... the editors have continued to ask for our feedback and said they'll take it on board. A number of us have provided advice on accessibility, payment for writers, language and content to both the site's editors and writers. The atmosphere in their dedicated Facebook writers group got very nasty, and on Friday afternoon ... many of us (people with disabilities and those without) were removed from the group - with no warning and a very poor explanation following our removal ...

Latest additions to our 'Other Events 2016' listings

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. Check this page (also linked below the blog banner) for all current listings.

Murmuration Dance Theatre - Marrickville
Sydney’s first professional integrated dance company, working alongside artists with and without disability to create new contemporary dance theatre works, launched in 2015.

The 2016 program has been announced, including 24 dance and theatre workshops - details are here.

Siblings of Children with a Disability

Workshop presented by Kate Strohm, Director, Siblings Australia - will assist parents to understand the concerns of siblings; identify behaviours that might indicate stress; explore factors affecting the adjustment of siblings; identify parent role in supporting siblings; identify other sources of support for siblings; meet other parents with similar experience.

Contact: Louise Hall louise@nbi.org.au  or 02 9970 0500
1 March 2016 - North Narrabeen

Arts Activated website

Sprung!! needs support to survive

If you have an established local community initiative that actively supports inclusion in your local community, you will understand the passion that Sprung!! members are feeling right now. Threats like this go way beyond the possible loss of a dance or theatre class - they cut right to the heart of the community that so many are working so effectively to build. 

Sprung!! Integrated Dance Theatre is a wonderful and much loved arts initiative on the far north coast of NSW, providing opportunities for people with and without disabilities. It has been exciting to watch their development over several years, and the emergence of some great talent, growth and connections.

Sprung!! is currently running a series of Facebook posts in which members talk about what Sprung!! means to them, and showcasing their development as dancers (just scroll back through the last few weeks) - several of them are young people with Down syndrome.

Despite its valuable work for its members and its very significant contribution to the wider local community through its performances, Sprung!! now finds itself under threat after a major cut in regional arts funding. You can read about the potential impact, and how you can support Sprung's plans to help itself through a crowd funding campaign here.

Treading lightly and thoughtfully around language and disability

There's plenty of advice and opinion, but there is no single 'correct' language - the best guide is what the person with the disability prefers ...

Journalists should learn to carefully traverse a variety of disability terminology
Beth Haller, National Center on Disability and Journalism (University of Arizona), 7 January 2016
... The one thing that both sides of the terminology discussion agree on is that language about disability is important, so journalists must clearly understand language preferences when reporting on disability issues ...

Inclusive Language

Australian Network on Disability, undated

... the most important thing you can remember is to simply focus on the person, rather than the disability. Don’t be so afraid of saying the wrong thing that you don’t say anything at all – relax, and just be willing to communicate.

We were alerted to this short, but powerful advice on thoughtful language by Carly Findlay, via Facebook:

"Instead of telling disabled kids “you can do anything you want if you put your mind to it,” I think we should tell them, “the things you are capable of doing matter.” 

A person can’t live on an increasingly strained hope that someday they’ll be good enough.

...  Fully Articulated, Fully Capable of Skeleton Dance, 24th December 2015

On the other hand, if you want to start a robust discussion, try using 'low functioning'/'high functioning'  about people with disability - see this 2014 post for more.

Resources

Library Shelf
Two new titles that will be useful for families with children starting at new schools this year:

Explaining Down Syndrome

Angela Royston, Franklin Watts Publishers
This book is one in the series of 'Explaining ...' books, published in the UK. This is the 2013 edition of the title originally published in 2009. It addresses all the life stages in an easliy accessible format. Written for an upper primary (and older) audience, the book contains contemporary colour photos.

Can I Tell You About Down Syndrome? A guide for friends, family and professionals

Elizabeth Elliott, illustrated by Manjit Thapp, Jessica Kingsley publishers
Told as a first person narrative, from the point of view of David, who describes what it is like to have Down syndrome along with some concise explanations.

This book is suitable for a primary school aged (and above) audience, as well as parents, friends and classroom teachers.

Elizabeth Elliott is a child and adolescent psychiatrist and Chair at Downs Syndrome Research Foundation in the UK

Down Syndrome NSW members can contact Jo in the library via email library@dsansw.org.au to arrange a loan.

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

A review of The Parents' Guide to Down Syndrome, by the parent of a young child

... A section of self-advocacy? Yes please! And "The combination of genetics, environment, science, and love that makes every person unique is not erased or diminished by Down syndrome." Finally. Your kid is your kid is your kid ...

• Previous post on this book

Carly Findlay, activist

Carly Findlay is a Melbourne writer, speaker and appearance activist with a growing profile in the broader disability activism field, for her her clear thinking and writing, from the perspective of a person with a disability. Several of her blog posts have been adapted in the mainstream press, and they resonate widely.

She is the latest addition to our list of 'Blogs we read' (scroll down the right hand column), and well worth  following on Facebook too.

This weekend, The Age (Melbourne) published an article quoting her criticism of a particular theme of Facebook posts exploiting people with disabilities, and she has expanded it into a blog post published today. We might not all use Facebook, but it can generate attitudes and actions that have an impact in real life - it's not a big stretch to see how people with intellectual disability can be affected:

Stop praying for and exploiting disabled children and adults on Facebook
Carly Findlay, 11th January 2016
... People are stealing photos and using them on Facebook pages and groups. Hell, I saw one 'prayer group', dedicated to sharing these photos, encouraging mindless scrolling and typing amen. What does this achieve?

These posts don't state or explain a diagnosis or aspects of disabilities (not that strangers need to know), humanise the person featured, nor, as Craig Wallace and Jax Brown told The Age, draw attention to any real issues people with disabilities face (like access and employment) ...

Disability advocates demand an end to 'slacktivism' and 'inspiration porn'
Jill Stark, The Age, 10 January 2016
Carly Findlay doesn't want your prayers on Facebook. She has only one ask: think before you click. The Melbourne-based writer and appearance activist is among a growing number of people with disabilities demanding an end to online "slacktivism" that reduces their lives to a world of pity and low expectation ...

Carly posted on Facebook just a couple of weeks ago:
If you're a parent of a child whose photo has been misused in a viral Facebook post, you can fill out this form and submit to Facebook. DeDe from My Warriors Conquering the World did this when Evan's photo was stolen and ridiculed, which resulted in removal of the photo.

Qantas carer concession card

Information posted by People with Disability Australia, who will now administer the card, after the closure of NICAN:

The Qantas Carer Concession Card is issued to people with disability and high level support needs who require the full-time assistance of a carer whilst they are on the aircraft. A person is eligible if they need to have one-on-one support when seated on the aircraft for assistance with meals/drinks, transferring to the bathroom, orientation, communicating with the flight staff etc. A person is not eligible if they only need assistance boarding the aircraft, or when they arrive at their destination. 

Qantas Carer Concession cardholders and their nominated carer will receive the following discounts for Qantas domestic travel within Australia ... further information here.

Weekend and viewing: 9 - 10 January 2016

My Response to “He’s So Lucky to Have You!”

Ellen Haws, Adoption.com, 22 December 2015

Let me tell you some things about my wonderful son, Elliot. He makes me laugh every day. He has a level of determination that I have never seen in others. He has no guile. He loves unconditionally. He is stubborn and very independent. He has the most beautiful smile. He is adopted. He has Down Syndrome. I’d like to point out I did not say that he was lucky ...

Sex and Down Syndrome
Meriah Nichols, Two Thirds of the Planet, 14 October 2014
I think we should be talking more about sexuality and Down syndrome ... Our children are going to grow up, they will become adults with Down syndrome. And just as adults with Down syndrome currently are, they will people who are (hopefully) sexual; people who enjoy that aspect of life and find fulfilment therein. People who love – both emotionally and physically ...

When traveling with children, all needs are special

David M Perry, Washington Post, 22 December 2015

... long distance roaming had seemed impossible ... the logistics seemed overwhelming. Our son has Down syndrome, with a highly limited diet and – in the past – difficulty adapting to changes of routine ... But we’ve reached a point where it’s clear neither of our children have special needs. They just have needs, like all kids ...

This Des Moines woman is showing that cooking can change lives

Mike Kilen, Des Moines Register, 28 December 2015

... The coffee shop is run by students with intellectual disabilities. Teaching them to bake launched another new venture this fall, a digital cooking magazine geared for people with disabilities ...

Queen’s honour for Chaddesley Corbett learning disabilities expert

Kidderminster Shuttle (UK), 31st December 2015
A dedicted learning disabilities academic has been handed a CBE for his work in the Queen’s New Year honours list. Professor Barry Carpenter, who lives in Chaddesley Corbett and has an adult daughter with Down’s Syndrome, was awarded the gong for his services to special educational needs ...

Support for enjoyment and safety of the beach and other water activities

We are so lucky to have a beautiful climate, the best beaches, and lots of opportunities for swimming and other water activities. Many people with Down syndrome love the beach and other swimming activities just like anyone else, and need little or no support to stay safe. Others need a bit of support to develop skills and confidence, and some need much more. 

In addition to community swimming and water safety activities that might be your first port of call, here are some places to try that aim to help you make the most of summer (and much of autumn and spring, or all year round), whatever support you or your child might need ...

Little Heroes Swim Academy is based in Sydney's eastern suburbs, offering classes and other activities in a number of locations there, and at Putney (Ryde). They are very experienced in teaching people with all kinds of disabilities, and include a program to 'bring the beach to people with disabilities because everyone has a right to be included'.

• Little Heroes Swim Academy on Facebook (see the 6 January post about the beach program)

Rainbow Club - fifteen clubs in NSW provide swimming lessons for children with a disability. They operate during the four school terms.

• Rainbow Club on Facebook

Down Syndrome Swimming Australia - 'DSSA encourages individuals with Down syndrome to actively participate in the great sport of swimming at all levels of competency. Our aim is to give people with Down syndrome the opportunity to swim competitively against other athletes and to provide a pathway to local, national and international competition.' DSSA has selected a team to compete in the World Trimsome Games in Florence, Italy in 2016.

• Down Syndrome Swimming Australia on Facebook

Disabled Surfers Association of Australia 'is uniquely Australian having ambitions to go global, whilst setting world’s best practice for the sport of Disabled Surfing. Initially set up for injured surfers, within a short time the DSA had dramatically widened its target group to cater for all disabilities that is anyone willing to have a go.' The website and Facbook page have the best photos!

• Disabled Surfers Australia on Facebook

Sailors with Disabilities 'provides free sailing and training programs for people with a disability, disadvantaged children and adults, and their carers.'

• Sailors with Disabilities on Facebook

Special Olympics Australia offers recreational and competitive Aquatics programs. You need to check into your local region's page on the website to see what activities are available. Some regions have their own Facebook pages.

• Special Olympics Australia on Facebook
• Special Olympics ACT and NSW on Facebook

Swimming Australia 'recognises the great potential for people with disability to participate in all aspects of the sport and we have been committed for many years to making inclusion simply part of what we do. Swimming Australia believes in taking a social approach to disability inclusion by putting the swimmer first, adapting to individual need and addressing both physical and attitudinal barriers to participation.' Links to State associations, clubs, classification, competitions and other disability/swimming organisations.

• Swimming NSW on Facebook

Intellectual Disability and Mental Health:

Prof Julian Trollor on Intellectual Disability Mental Health

University of NSW, 3 December 2015 (video 57m)

Another doctor with particular expertise and experience, academic and clinical is Prof Julian Trollor, the first Head of the Department of Developmental Disability Neuropsychiatry and Professor of Intellectual Disability Mental Health at the University of NSW. He delivered his inaugural professional lecture on International Day for People with Disability (3 December 2015).



Prof Trollor's talk is grounded in the experience of NSW citizens with intellectual disability needing to access mental health care, and strategic planning for better outcomes for them.

The Department of Developmental Disability Neuropsychiatry is known as 3DN, and maintains a very useful website providing information and resources for academics, professionals, carers and the community. A great deal of very important work is being done here, that deserves to be better known.

Let's hear from Dr Brian Skotko

A medical geneticist in Boston, whose sister Kristen has Down syndrome, Dr Brian Skotko is well known and highly regarded with the Down syndrome and medical communities. This is a small sample of his recent public speaking activities:

Interview with Brian Skotko
Recorded December 2015 (audio 1 hr 9 mins)
Rob Snow, comedian and father of a son with Down syndrome interviews Dr Brian Skotko, paediatrician and medical geneticist, Co-Director of the Down Syndrome Program at Massachusetts General Hospital.
A wide ranging discussion, easy to listen to.

Down Syndrome: Not Just An Extra Chromosome
Dr Brian Skotko, Partners Healthcare Medical Genetics Grand Rounds, 17 June 2015
Dr Skotko's presentation on prenatal screening and diagnosis of Down syndrome, and disclosure of results, his research with families, and health care for pwoplw with Down syndrome more generally, with his professional peers at the William K. Bowes Award in Medical Genetics Grand Rounds in June 2015. Dr Skotko was the recipient of the 10th annual William K Bowes Award in 2015.

Free school holidays class: Sydney

Brent Street Studios is in Moore Park (Fox Studios, Sydney):

• For further information on Perform-Ability classes, events and locations (Newcastle, Central Coast and Sydney), and for contact details visit the website or Facebook page.

Discrimination in Qld court ruling criticised on appeal

Not all the news has been sweetness and light over the holidays. This news story was published in Queensland over the weekend, and has, as you might expect, been much commented upon.  Down Syndrome Australia commented (on Facebook, 3 January 2016) ...

It would be easy to blame the judiciary for this appalling discriminatory action, but these attitudes still do and will continue to permeate much of our society as long as we allow anything less than fully inclusive life opportunities for people with Down syndrome. 

Happily, the judge's decision was struck down on appeal. if only attitudes and beliefs could be so easily changed.

Down syndrome man’s case upheld on appeal after ‘shocking’ slight by judgeKay Dibben, The Courier-Mail, 2 January 2016

A District Court judge has been criticised for deciding a man with Down syndrome did not need a share of his father’s estate because he could not go to the pub, races or the movies ...

Parenting with an intellectual disability: on 'The Project'

From NSW CID on Facebook, 5 January 2016:

All parents need support to raise a child. Support needs vary depending on many things like life experience and how we learn.

Last night Ch10's The Project shared Ashley Odger's story, a Dad with intellectual disability who is challenging the misconception that parents with intellectual disability can't make good parents.

"They thought it was not going to work but I proved them wrong" says Ashley. Meet him and his daughter here:

Parenting with a disability, The Project, 4 January 2016

Ashley Odgers may have a genetic condition leaving him with an intellectual disability, but he's proven to critics that he can also be a wonderful father.

For more information on support for parents with intellectual disability contact Ask CID on 1800 424 065 or email info@nswcid.org.au

• NSW Council on Intellectual Disability is the peak body supporting the interests of people with intellectual disability in NSW

Resources

The Parent's Guide to Down Syndrome: Advice, Information, Inspiration, and Support for Raising Your Child from Diagnosis through Adulthood

Jennifer Jacob and Mardra Sikora, 2016

As a parent of a child diagnosed with Down syndrome, you may be feeling unsure of what to do next or where your child's journey will take you. In this book, authors Jen Jacob and Mardra Sikora share their experiences and guide you through life with DS with expert advice from diagnosis to adulthood. Each page teaches you ways to support your child through major milestones; nurture their development; and ensure that they succeed behaviorally, socially, and cognitively. You'll also find valuable information on:

• Sharing the news with loved ones
• Transitioning into primary school
• Developing your child's social skills
• Discussing future opportunities, including employment and housing options  ... (authors' notes)

Early reviews, part of an online 'book tour' are here and here.

Harness the Possibilities: Planning a positive future for a child with disability  - free booklet to download
Resourcing Families, 2015

This booklet is based on the input and experiences of families in NSW and is intended to help families develop a positive vision for their child with disability. It is hoped that it provides some ideas and strategies for building meaningful and fulfilling lives. It does not cover every aspect of a child’s life, but aims to present a broad picture of how your child with disability can be supported to live an inclusive life in the community ... Foreword.

Best apps for people with disabilities
House with No Steps
With the advent of smartphones and tablets, a fantastic range of apps are now available which improve accessibility for people with a disability ...

Carer Gateway
A new Federal Government initiative. Carer Gateway is a national online and phone service that provides practical information and resources to support carers. The interactive service finder helps carers connect to local support services.

Research news and commentary #1 for 2016

Positive results for parenting as research phase wraps up in Queensland

Triple P Stepping Stones, 3 December 2015

'Happier, less stressed and able to better deal with problems.'

Those are just some of the positive changes parents who have done Stepping Stones Triple P are experiencing ...

Research traces cause of organ dysfunction in Down syndrome

Johns Hopkins University (via Eureka Alert), 14 December 2015

While most Down syndrome research has focused on the brain, a new report by Johns Hopkins University biologists uncovers how the disorder hampers a separate part of the nervous system that plays a key role in health and longevity ...

• Full text Nature Communications article online:

RCAN1 links impaired neurotrophin trafficking to aberrant development of the sympathetic nervous system in Down syndromeAmi Patel, Naoya Yamashita, Maria Ascaño, Daniel Bodmer, Erica Boehm, Chantal Bodkin-Clarke, Yun Kyoung Ryu Rejji Kuruvilla, Nature Communications 6, Article number: 10119, Published 14 December 2015

New Effort To Boost Down Syndrome Research
Shaun Heasley, Disability Scoop, 11 December 2015
Research on Down syndrome has long lagged behind other conditions, but a new effort is underway to make it easier to study the chromosomal disorder. For the first time, a biobank is being established specifically to collect and manage blood samples from people with Down syndrome ...

Improved Survival in Down Syndrome over the Last 60 Years and the Impact of Perinatal Factors in Recent Decades
Emma J. Glasson, Angela Jacques, Kingsley Wong, Jenny Bourke, Helen Leonard (University of Western Australia), Journal of Pediatrics, 1 December 2015
Objective:  To calculate the survival of people with Down syndrome over the past 60 years and the influence of major perinatal factors by using linked population-based data ...
... Conclusions:  Improved survival for children born with Down syndrome over the last 60 years has occurred incrementally, but disparities still exist for children who are preterm or have low birth weight.

• Abstract only available free online. Full text available for purchase.

Keeping up with 2016

Welcome back - didn't that end-of-year break go fast? There's a bit going on in the disability community generally, and Down syndrome community in particular, but we will ease into it, since some of us are still on holidays, especially here in Australia.

First up - just before Christmas we posted about 12 year old Caleb Jordan's debut as a catalogue model for Target Australia. If you'd like to follow his progress, you can do so via his Facebook page and Instagram account @caleb_jordan1312.

If you would care to share what you have been doing, or to recommend something we should follow or address in 2016, or send us a photo or two, you are very welcome.  Please use this email address to reach the blog editor directly: downsyndromenswblogs@gmail.com, or  admin@dsansw.org.au for the Down Syndrome NSW office.