Tuesday, 9 February 2016

New book: 'Here to Stay'

Eleanor Bailey is on the cover.
Here to Stay: Americans with intellectual and developmental disabilities, Michael T Bailey, February 2016
People with intellectual disabilities are virtually absent from American history. Why? Where are their voices? Why institutions? Why eugenics? Are things getting better? What is the future? These and other issues are addressed as well as commentary on the history of the US, exclusion and steps to gain real membership in the American dream.

Michael T. Bailey is past president of the National Disability Rights Network as well as Disability Rights Oregon. Author of Special Education: A Parent's Guide to a Child's Success. A member of ADAPT he is the father of a young woman with an intellectual disability. (Publisher's note).
Here to Stay is widely available from online booksellers. A Kindle edition will be available soon.

What's it like for people with intellectual disability to live in their own home of their choice? CDS information event




Monday, 8 February 2016

2016: language still matters, everywhere

Zika, Abortion and Disability Rhetoric
David M Perry, How Did We Get Into This Mess? 4 February 2016
The discourse around Zika has included a constant barrage of ableist language in which reproductive rights advocates suggest that a disability like microcephaly naturally means a mother would want to terminate ...

Disability, Language, and Empowerment
Dorodi Sharma (guest blogger), Kafila, 3 February 2016
... even in the 21st century we need to coach people on ‘interacting’ with a section of humanity. The discourse on importance of language has taken a new meaning when recently Prime Minister Narendra Modi called people with disabilities ‘divyang’ or people with divine abilities. The reaction to this has been outrage, to shaking of heads, to complete indifference ...

Channel 4 to launch 'year of disability
'
Jasper Jackson, Channel 4 (UK) 19 January 2016
Channel 4 is launching a “year of disability” to increase representation of disabled people in broadcasting including a commitment to double the number of people with disabilities appearing in its 20 most high-profile shows such as Googlebox and Hollyoaks ...

People first vs identity first: a discussion about language and disability
Shawn Burns, Croakey, 23 January 2016
In Australia we are used to using ‘people first’ language (‘a person with autism’), to identify people with disabilities. However, in other places, such as the UK, ‘identify first’ terminology (an ‘autistic person’) is preferred. Both types of language have been suggested and are supported by communities within the disability sector and there are strong feelings about which is more appropriate and reflective of the views of people with direct experience of disability ...

Service, Support and Success, Volume 5, Issues 1 and 2

Service, Support and Success is a monthly newsletter designed for direct support workers supporting people with intellectual and developmental disabilities. It is published by Vita Community Services (Toronto, Canada), under the editorship of Dave Hingsburger and Angie Nethercott, and is freely available online.
Volume 5 - Issue 1 : Resolved: Change the World, Dave Hingsburger, 1 January 2016
New Year’s, for many, is a time when resolutions are made and, usually quickly thereafter, broken. Even so, some do succeed. Some make a decision, stick to it, and change their lives. This issue begins our 5th year of publication and, in talking about it, Angie and I decided to mark this milestone by telling you three stories. Each of these stories will illustrate how we all, in our work with people with disabilities, can, if we choose to, change the world. We can have an impact that is much greater than we imagine and, if we put our minds together and act as a group purposefully, what we achieve can be nothing less than world changing ... 
Volume 5 - Issue 2: Let's talk... about mental health and developmental disabilitiesYona Lunsky,   Rob Balogh, Kristin Dobranowski,  Avra Selick,  Elizabeth Lin, 1st February 2016
The Bell Let’s Talk campaign suggests 5 ways to end the stigma around mental illness: • language matters, • educate yourself, • be kind, • listen and ask, and • talk about it ...
Service Support and Success is well worth the (free) subscription or a bookmark if you work with or are interested in supporting people with intellectual disability.

Friday, 5 February 2016

Weekend reading and viewing: 6 - 7 February 2016


Let me tell you how I feel
Kelle Hampton, Enjoying the Small Things, 2 February 2016
... A comment: “JFC. Why is it always about how YOU feel? Whenever you discuss Nella and her diagnosis, it’s always about how YOU feel about the challenges; not her. It says a lot.”

I don’t usually respond to troll comments, but this topic! ...


The Problem With Disney Princess Makeovers — Yes, Even This One
Elizabeth Kiefer, Refinery 29, 1 February 2016
While all of the looks the stylist team created for Maddy turned out beautifully — each and every character-inspired shot is spot-on — I still can't help but wish we were simply looking at Maddy herself, not Maddy reimagined as someone else ...

What New York Magazine got wrong about intellectual disability
Bloom, 29 January 2016
... one statement in the piece never should have made its way past a fact-checker. In talking about whether intellectually disabled women can raise their children, the author writes: “one of the signs of intellectual disability is a limited capacity for empathy.” ...

Should I send my child to a special school? Our path to inclusion
Catia Malaquias, Starting with Julius, 4 February 2016
... “Tell me what ‘special needs’ Julius has? I don’t think he has any. He has the same needs as any child … to be loved, fed, clothed, sheltered and educated – he might need a bit more help with having some of those needs met, but there is nothing ‘special’ about them, they are regular human needs.” ...

Rainbow Bridge Social Club launching in Sydney

From My Choice Matters - The NSW Consumer Development Fund 3 February 2016:
Rainbow Bridge Social Club is a social club for same-sex attracted young people with intellectual disability. Charitha and his mum are launching it as part of their Run Project, working with Twenty10 to make it happen. 
They're launching the club on February 14 in Chippendale, Sydney and want to extend the invite.  
If you're interested in attending or want more info please get in touch on rainbowbridgesocialclub@gmail.com


(Image description: A circular logo with a rainbow flag in the background and the club name as a bridge image in the centre.)

Thursday, 4 February 2016

Research news and commentary #2 for 2016


World’s First Clinical Trial for anti-Abeta Vaccine Targeting Alzheimer’sDisease-like Characteristics in People with Down Syndrome
AC Immune, 7 January 2016
Today plans were announced to conduct the world’s first clinical trial for a vaccine targeting Alzheimer’s disease-like characteristics in those with Down syndrome. The study will test AC Immune’s vaccine ACI-24 and is being conducted in collaboration with the University of California, San Diego (UC San Diego) Down Syndrome Research and Treatment Center. Funding is provided by a significant grant from the US National Institutes of Health (NIH) and an additional grant from the LuMind Research Down Syndrome Foundation. This is the first public/private collaboration for a clinical trial in the field of Down syndrome ...

Vaccine Targets Alzheimer’s Disease-like Characteristics in People with Down Syndrome
University of San Diego, 13 January 2016
Clinical trial will investigate safety and tolerability of immunotherapy drug to block amyloid buildup in brain ...
Employment model outcomes for people with intellectual disability
The Social Policy Research Centre at the University of NSW is looking for people with intellectual disability, who live in Sydney or the Northern Rivers, to take part in some research about employment.

An Easy English flyer and more details are available on the web page - the information on the website is the same as in the flyer.

Clinical trial gives boy with Down Syndrome new lease on life
WCVB, 3 December 2015
... Jesse was finally breathing on his own through the night, thanks to the implant. No more tubes, no more oxygen, no more sleepless nights for his parents. And finally, no more trach ...
M Stefanini et al, Special Care Dentistry, 29 December 2015
This study demonstrates how the Digital Brush, added to the daily oral hygiene procedures, obtains significant improvements in supragingival plaque control in children with Down syndrome.

Better Start - Early Days webinars: February, March

Better Start - Early Days has announced a new webinar program for parents who have a young child with a disability:
These webinars complement our national program of workshops for parents who are in the early days of the journey with their child and who are still finding their way in the disability system.

YOU JUST NEED A COMPUTER AND AN INTERNET CONNECTION. IT'S EASIER THAN YOU THINK!
There are four free one-hour webinars:
1. Funding and Finding Your Way – focusing on Better Start and NDIS funding
2. Early Childhood Intervention
3. Parent and Carer Wellbeing
4. Future Planning
Parents can choose the ones that suit them. 
We will run the webinars regularly. Visit our website to see when they are on, or register interest for future webinars or workshops.

Wednesday, 3 February 2016

Embracing Success 2016: education conference early bird prices extended


Embracing Success Education Conference 2016: Realising the Potential is a must attend for all education professionals working with a student with Down syndrome.

Early bird prices have been extended until Friday 19 February 2016


Embracing Success Education Conference 2016: Realising the Potential

17 and 18 March 2016 
SMC Function Centre, 66 Goulburn St, Sydney


Contact Down Syndrome NSW on (02) 9841 4444 for more information.


News and commentary on schooling

The start of the new school year prompts reflection on and examination of the state of play for students with disability in Australian schools, and supportive information for classroom teachers:

Robert Jackson and Catia Malaquias, Starting with Julius, 27 January 2016
The 2016 Australian school year is about to start and teachers in regular mainstream classrooms will be busy planning and preparing teaching materials, including differentiated curricula materials for students with disability allocated to their class.

But just as important as applying universal design and differentiated instruction is creating and maintaining an inclusive culture for the class … a culture in which every student feels welcomed and included both as a learner and as a valued peer ...


Students with disability shouldn't be underestimated
Chris Varney, Sydney Morning Herald, 25 January 2016
As school goes back for the year, the Senate report into the systemic failings of the education system for students with disability is very timely. In the myriad emails principals will see in their inbox, I hope mention of this report is one of them ...

Parents and disability advocates cautiously welcome MySchool publication of disability access data
Tim Palmer, PM (ABC radio), 22 January 2016
The Government's MySchool website will now publish data about the opportunities schools provide to children with disabilities. That move comes after a Senate inquiry found they were often being denied proper access to schools. Disability advocates have welcomed the news, but hold some concerns about just what data will be published ...

Teachers, Parents, and Students: Let's Talk About Ableism
Mardra Sikora, Huffington Post, 28 January 2016
Humans. I'm sure I don't need to tell you; we are one fragmented and flawed race. So many complex issues for, against, and with other humans. So many small infractions upon each other and some days those small dings compound into too much. In my world, I am witness to an ongoing phenomenon called ableism. Oh no, not another ism! Cry the masses ...


In Australia, children with disabilities only receive additional government funding if they fall into a recognised disability category. As a result, schools and parents often come under pressure to obtain the “right” diagnosis for their child. Such misdiagnosis carries a hidden cost ...

How schools avoid enrolling children with disabilities
Linda J Graham and Helen Proctor, The Conversation, 28 January 2016
Children with disabilities are frequently discriminated against in Australian schools. It’s an issue that has been ongoing for years, with reports showing that little has improved since 2002.

Exclusion practices – dubbed as “gatekeeping” - include advising parents to send their child to another school that could better support them; only allowing a child to attend a school on the days that funding is available; and asking parents to pay extra money so the school can employ support staff or purchase equipment ...

Karen O'Connell, The Conversation, 29 January 2016
Parents are often accused of being too pushy when it comes to their child’s education. The stereotype is of a demanding consumer parent and an over-scheduled child, enrolled in violin lessons, language classes, maths tutoring – and the most expensive private school the family can afford ...

Henrietta Cook, The Age, 20 January 2016
A worrying number of private schools are refusing to enrol students with a disability or asking them to leave, a peak advocacy group says.

Children with Disability Australia receives about 500 reports a year of schools, both private and public, mistreating or discriminating against students with a disability. These range from schools refusing enrolment because they already have "their quota of autistic students" to teachers asking students to leave ...

Tuesday, 2 February 2016

Rescources

World Down Syndrome Congress 2015: presentationsIn case you missed the World Down Syndrome Congress 2015, the speakers' presentations and videos are now available online, here.


  • Down Syndrome NSW Executive Director, Tracylee Arestides' report on her 12th WDSC experience:

Planning for an emergency situation
Carer Gateway
An emergency care plan is a folder or a piece of paper with all the important information in one place. The idea is to make it easy for someone to take over from you in a hurry ...

Creating One Page Profiles with people who do not use words
Helen Sanderson Associates, 30 September 2014
The purpose of a one-page profile is to provide a summary of person-centred information that people in a person's life can use to either get to know them quickly, or ensure that they are providing consistent support in the way that the person wants. By considering what is important to and for a person, and what good support looks like, one page profiles illuminate actions that make a real difference in a person's life. This animate explores the ways that a one page profile can be created with people who do not use words to communicate.


'The Secret Life of Stories': a new book from Michael Bérubé

Michael Bérubé'Life as We Know It: A Father, A Family, and an Exceptional Child, published in 1996 remains a highlight in the literature about people with Down syndrome and their families - a landmark in a then burgeoning list of family accounts. So his latest book, due for publication tomorrow in the US, is much anticipated. If you are a reader, this is one for your 2016 reading list.

The Secret Life of Stories: From Don Quixote to Harry Potter, How Understanding Intellectual Disability Transforms the Way we ReadMichael Bérubé, New York University Press, 2016
Narrative informs everything we think, do, plan, remember, and imagine. We tell stories and we listen to stories, gauging their “well-formedness” within a couple of years of learning to walk and talk. Some argue that the capacity to understand narrative is innate to our species; others claim that while that might be so, the invention of writing then re-wired our brains.

In The Secret Life of Stories, Michael Bérubé tells a dramatically different tale, in a compelling account of how an understanding of intellectual disability can transform our understanding of narrative. Instead of focusing on characters with disabilities, he shows how ideas about intellectual disability inform an astonishingly wide array of narrative strategies, providing a new and startling way of thinking through questions of time, self-reflexivity, and motive in the experience of reading. Interweaving his own stories with readings of such texts as Faulkner’s The Sound and the Fury, Haddon’s The Curious Incident of the Dog in the Night-Time, Kingston’s The Woman Warrior, and Philip K. Dick’s Martian Time-Slip, Bérubé puts his theory into practice, stretching the purview of the study of literature and the role of disability studies within it. Armed only with the tools of close reading, Bérubé demonstrates the immensely generative possibilities in the ways disability is deployed within fiction, finding in them powerful meditations on what it means to be a social being, a sentient creature with an awareness of mortality and causality — and sentience itself. Persuasive and witty, Michael Bérubé engages Harry Potter fans and scholars of literature alike. For all readers, The Secret Life of Stories will fundamentally change the way we think about the way we read. (Publisher's note)
The Secret Life of Stories is widely listed by booksellers online, and is available in both print and Kindle editions.

Life As We Know It is available for Down Syndrome NSW members to borrow from our library, as is  Great Expectations (2008) to which Bérubé contributed three stories about his son, Jamie, who has Down syndrome, and the assumptions, expectations and realities of his academic abilities and thought processes.

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

Monday, 1 February 2016

News and commentary on the NDIS (43)



2016: A big year for the NDIS
Every Australian Counts, 20 January 2016
If 2015 was a big year for the NDIS and Every Australian Counts, 2016 is promising to be even bigger. With the full roll out of the NDIS just six months away the Every Australian Counts team has been planning our campaign for the year ahead based on what you told us were your priorities.
We have a whole calendar of campaign actions coming up all about making the NDIS the best it can be ...

My Choice Matters - The NSW Consumer Development Fund has a new website
The website has been updated to make it more accessible and easier to navigate.Find out about workshops on the NDIS, read stories of people's journey to become a leader or managing their Run Project, find resources on NDIS and thinking about dreams and goals, and much more.

Brave New World: Parts 1 - 5
The Wire Radio, 8 December 2015When the NDIS was introduced in 2013, it was the biggest change to our health system since Medicare. It was heralded as being about choice and control, but in 2015 there are worries some people are falling through the cracks. Brave New World looks at the key challenges facing the people and organisations, who are learning, and sometimes failing to navigate this new system

Friday, 29 January 2016

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.” ...

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 ...

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:
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.

Thursday, 28 January 2016

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.'



Wednesday, 27 January 2016

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.






Tuesday, 26 January 2016

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.

Monday, 25 January 2016

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

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

Friday, 22 January 2016

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.

Thursday, 21 January 2016

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.  

Wednesday, 20 January 2016

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

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 ...

Tuesday, 19 January 2016

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

    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

    Monday, 18 January 2016

    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.

    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:

    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

    Saturday, 16 January 2016

    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?



    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 ...

    Friday, 15 January 2016

    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 ResolutionAlice 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 ...

    Thursday, 14 January 2016

    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





    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.