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.