Friday, 20 January 2017

Weekend reading and viewing : 21 - 22 January 2017

The Adult Down Syndrome Center, located in suburban Chicago, is a primary health care service specifically serving the needs of adults (and now teens) with Down syndrome. This week it celebrates its 25th anniversary. During that time its reach has been far beyond a local health care facility - valuable as that is. 

The experience and insight of the staff, patients and families has provided much information to people with Down syndrome and those who care for them across the world, through teaching, books and other publications, presentations at local and international conferences, research and social media. The benefit of the knowledge built up from caring for 6000+ people with Down syndrome has benefitted many thousands more. We congratulate all of those who created and have grown the ADSC, along with our very grateful thanks for your work and generosity in sharing it so readily for 25 years.

Dr Brian Chicoine, physician and co-director of the Center, has been there since the very first day, and has looked back over the Center's history this week
Blog: What I have learned from persons with Down syndromeDr. Brian Chicoine, Adult Down Syndrome Center, 17 January 2017
... A few years before the Center opened, Robert Fulghum wrote “All I Really Need to Know I Learned in Kindergarten.” I have often thought that I should write a companion book, “All I Need to Know Can Be Learned from People with Down Syndrome.” In it, I would describe some of the many lessons that I have learned ...
Down Syndrome and the Stories We Tell
David M. Perry, Pacific Standard, 13 January 2017
My non-verbal son’s reactions to stories and films tell me he’s ‘competent’ in ways he can’t yet express — and I can’t yet fully understand ...
... We try always to “presume competence.” This phrase, popular in the intellectual and developmental disability community, commands us to engage with disabled individuals under the presumption that they understand, that they are communicating in ways that work for them, that they are competent people. It’s definitely one of my watchwords in terms of my goals as a parent, but it’s often hard to achieve in practice. Sometimes, I really do want to know what he’s thinking ...

Festival features films about, created by individuals with Down syndrome
Jessica Anderson, Baltimore Sun, 15 January 2016
After Ethan Saylor's death in 2013, many families in the Down syndrome community say they tended to avoid movie theaters, but a film festival opening in Annapolis this weekend aims to change that ...

... Holland said she hopes the event will draw others from outside the community and show how capable those with Down syndrome are when given the chance.

"It was born out of tragedy, but it's really a story about how change can happen," she said ...

My Mom or My Battles
Dave Hingsburger, Of Battered Aspect, 13 January 2017
People thought him funny. And because they thought him funny, they laughed at him. All he had tried to do was to be assertive and stand his ground. In fact, he had done that, but in doing so he made himself ridiculous in the eyes of pretty much everyone around ... I worry more and more and more about the theft of the voices of people with intellectual disabilities by those who, while they have good motives, take what's not theirs ...

Thursday, 19 January 2017

Rights, discrimination

Feeling Streepy
Susan Fleming, All Born In, 16 January 2017
... but we do need some new stories. Some main characters. With plots that don’t fit a tiny cliched mold. People with disabilities are complex, dynamic people living complex, dynamic lives ...

Be brave and speak up for your rights
Leigh Creighton, Newcastle Herald, 13 January 2017
Human rights violations happen only in far away, mostly war-torn countries right?

Wrong. In Australia, our lucky, war-free country, virtually every person with a disability experiences rights violations at some point in their life. For many, these violations occur not just once, but daily ...

Facebook video reminder of violence faced by disabled Americans
David Perry, CNN, 5 January 2017
... The racist comments are inflammatory. People -- via both formal and social media -- have expressed outrage. But while the nature of the remarks on the video have unsurprisingly sparked much discussion about race, Trump and the live streaming of crimes, something important risks being overlooked: the chilling, everyday, truth that to be disabled in America is to be at greater risk of violence ...

How Is The World Treating People With Disabilities?
Susan Brink, NPR, 18 December 2016
In the ten years since the United Nations adopted the Convention on the Rights of Persons with Disabilities, ratified by 168 countries, there has been both progress and stubborn obstacles ...

Four attitude-change areas to help Australians with a disability
Christine Linden, ANZ Blue Notes, 2 December 2016
Almost 20 per cent of Australians, around four million people, live with a disability. However, the employment of people with disability in Australia lags well behind other OECD countries –ranking 21st out of 29 OECD in this area. Australia also has a poor track record of recognising human rights for people with disability, ranking last (27th of 27) in OECD countries for people with a disability living in or near poverty.
These statistics alone should provide a powerful trigger to attitude-change towards people with disability.

Voice subscription and selected articles online

Voice is the journal of Down Syndrome Australia, published in May, August and December. Subscription to the print edition of the national journal is included in the membership fees of state and territory associations. 

Subscriptions and access to selected articles are now available more widely.

You can now take advantage of a new feature and subscribe online. The target readership is member families of state and territory associations but the publication is expected to also be of interest to practitioners and professionals whose work brings them into contact with individuals with Down syndrome.

Selected articles online
After each publication is released, some favourite articles will now be featured on the DSA website, giving you access to them wherever you are, and making it easier to share those articles with others.

For example, from the July 2016 issue of Voice, one of the articles released online is Rachel Kroes's (Executive Officer, Down Syndrome Association NT), Sharing the journey - travelling outback:
... The key to development of services and growth in understanding about Down syndrome in Aboriginal culture is to visit often, as communities are well aware of the many services that appear and then disappear. One needs to be consistent, seek out the same people, follow a similar routine each visit and be open to the total unpredictability of remote life. Then, quietly, respect and trust solidifies. Hearts and conversation open and we hear such similar concerns and fears as confided to us by our families in urban Darwin. The geography is immaterial – these mums and dads express their love and concern for their children in ways similar yet unimaginable to city dwellers ...

Wednesday, 18 January 2017

NSW Sports Awards: Christopher Bunton, finalist

Congratulations to Christopher Bunton, who has been named as a finalist in the 2016 NSW Sports Awards, in the Athlete of the Year with a Disability category.

In 2016 Chris represented Australia t the Trisome Games in Italy, winning five gymnastics medals.

Chris has honed his skills in gymnastics and as a gymnastics teacher over many years of dedicated training and competition. The cover of the DS NSW Summer 2007 - 2008 Newsletter, featured Tony Stinson's photo of Chris Bunton, taken during competition at the World Special Olympic Games in Shanghai in 2007, as an already accomplished fifteen year old.

The awards will be announced at a gala dinner in Sydney on Thursday, 23 February 2017.
Now in its 22nd year, the prestigious NSW Sports Awards celebrate the finest achievements by NSW athletes, teams, coaches, administrators and organisations in 2016. 
An all-embracing event, the NSW Sports Awards acknowledge the breadth of sporting activity and achievement across the state each year with categories for able-bodied and disabled athletes, young athletes and masters athletes. Awards are also presented for the best event of the year, official of the year and the all important distinguished long service awards for those that have given exceptional long-time service to their sport ... Sport NSW

Tuesday, 17 January 2017

Research #1 for 2017

Gene Targets for in Utero Therapy in Down Syndrome: Potentials and Pitfalls
Jennifer Shinae Jennings and Ahmad Salehi, News-Medical, 13 january 2016
... new non-invasive prenatal testing methods ... offer an unprecedented opportunity for early treatment of brain abnormalities in DS. Currently, no therapy is available for cognitive dysfunction in DS and a recent clinical trial targeting a specific brain system in DS has not been very promising ...
Do children with Down syndrome need modified chemo for leukemia? No, says study
Vector (Boston Children's Hospital), 11 January 2016
Clinicians have long known that children with Down syndrome carry an elevated risk of developing acute lymphoblastic leukemia (ALL), the most common pediatric cancer. Research consistently shows that children with Down syndrome are more likely to suffer complications from chemotherapy. At the same time, some studies have suggested that children with Down syndrome and ALL may have a higher chance of relapsing.

What to do with this knowledge has been a source of controversy. Should patients with ALL and Down syndrome receive treatment modified to minimize toxicity from chemotherapy? Or should they be given the same treatment as other children with ALL to minimize the chance for relapse?

Research to Action Fact Sheets
NSWCID eNews, December 2016
The Centre for Applied Disability Research is making evidence about disability accessible with their research to action guides.
Current Guides:
Medical care of a child with Down syndrome probably not a financial burden for most families
Massachusetts General Hospital, 14 December 2016
The first study to analyze the out-of-pocket costs to families for the medical care of children and adolescents with Down syndrome finds that monthly costs – averaged over the first 18 years of life – are less than $100 a month more than the costs for care of a typically developing child. The report published in American Journal of Medical Genetics, Part A also finds that the additional costs are lower when the child is older ...

New Study Identifies Which Physical Features Are Best Indicators of Down Syndrome in Diverse Populations
(US) Children's National Health System, 19 December 2016
Physical features vary in patients with Down syndrome across diverse populations, according to a large international study published in the January 2017 issue of the American Journal of Medical Genetics. The study, led by the National Human Genome Research Institute (NHGRI), part of the National Institutes of Health, used an objective digital facial analysis technology developed by the Sheikh Zayed Institute for Pediatric Surgical Innovation at Children’s National Health System to identify the most relevant facial features characteristic in Down syndrome in diverse populations from 12 countries. This NHGRI study is the first to compare and contrast Down syndrome across diverse populations ...
Pain and Cognitive Functioning in Adults with Down Syndrome
Nanda C. de Knegt et al, Pain Medicine, 29 Deceber 2016 (advance publication)
The aim of the present study was to examine whether cognitive functioning (i.e., memory and executive functioning) is related to self-reported presence of pain ...

Conclusions. Memory seems to be related to the self-reported presence of pain in adults with DS after explicit inquiry, although the clinical use of this model is yet limited. Therefore, further research is needed for insight into the role of cognitive processes in self-report ... to evaluate whether neuropsychological examination could contribute to pain assessment in DS.
  • The abstract is available to read online without charge. The full text of the original study report is available for purchase online.

Employment opportunity at Down Syndrome NSW: Bookeeper and Data Base Manager

We are currently looking for a self-motivated, practical and skilled individual to be the bookkeeper for Down Syndrome NSW.

Permanent Part time, 30 hours per week, Monday to Thursday

Located at 410 Church Street, North Parramatta
Down Syndrome NSW (DS NSW) champions the right of people with Down syndrome to have the same access to society as everyone else. This means the right to health, education, work, family and being part of the community. 
We achieve this by supporting people with Down syndrome, their families and carers to be part of a strong and vibrant community that is informed, engaged and active.
DS NSW is an independent, not-for-profit organisation that was established in 1980 by parents of children with Down syndrome.
The Role
The role will involve day to day bookkeeping functions, including use of our accounting system Xero as well as data processing in relation to online payments, registrations, merchandise and services purchases. General data maintenance will form the other part of the role via our client management system Raisers Edge.

Monday, 16 January 2017

News and commentary on the NDIS (61)

Miki Perkins, The Age, 14 January 2017
There was a spa bath in the cabin, the beach close by and a glass of bubbles in hand (soft drink only of course). Their days were filled with sun, ice cream and conversation; the exquisite, ordinary pleasures of a weekend away ...

Concern about NDIS in remote areas as fewer than half of NT participants receive support payments
Jacqueline Breen, ABC News, 30 December 2016
Fewer than half of Northern Territorians eligible for funded support under the National Disability Insurance Scheme have had payments made against their plan, prompting renewed questions about the scheme's workings in remote areas ...
Naomi Woodley, ABC News, 24 December 2016
The inaugural chair of the agency running the National Disability Insurance Scheme has emphasised the importance of his board's independence and experience in the disability sector, as he prepares to leave the role ...

Sector Disappointed as NDIA Given Corporate Makeover
Wendy Williams, Probono News, 6 January 2016
The disability sector has expressed “disappointment” after a number of “corporate heavyweights” have been appointed to lead the National Disability Insurance Scheme in place of those with lived experience ...
Houston, we have some problems
Disability Services Consulting, 30 December 2016
... The 12 months between now and December 2017 will see the NDIS tested on just about every front as the transition to full scheme becomes real. Not only does the NDIA have to complete plans for a staggering 100,000 people with disability. But the NDIA will do this while managing through a mess of in-kind arrangements handed to them by the Commonwealth and States, an overly strict cap on their own staffing, as well as building a new program to help over one million Australians with disability or who are carers.

Despite the NDIA creating a rod for their own backs from time to time (eg. the removal of the float for self-managed participants), the NDIA deserve our patience and goodwill as they try and deliver the near impossible in 2017 ...

Myth busting and choosing to self-manage on the NDIS
Hire-Up, 8 December 2016
We often hear that finding clear, straight-forward information about choosing to self-manage on the NDIS can sometimes be tricky. This is largely because there are so many ways to self-manage on the NDIS and how a person arranges their supports depends on what they want to achieve ...
Libby Ellis, InCharge, 10 December 2016
This is the sixth post in our blog series about some of the common confusions and inconsistencies we’ve heard from people coming out of NDIS planning meetings ...

... Another confusion we’ve come across is around Plan Management and Supports Coordination. To recap on what these things are, plan management is one of the three ways you can manage your NDIS funds. With plan management, you have the flexibility to pay for both registered and unregistered providers with your NDIS funds ... Supports Coordination (or ‘Coordination of Supports’) is when someone helps you to implement your plan, to get started and find services and supports in your local community. If you receive supports co-ordination, it is a separately funded part of your Plan ... 
Linda Reynolds (Senator, WA), Huffington Post, 22 December 2016
As we prepare to spend Christmas with our family and friends, I ask all Australians to consider the plight of 6,200 younger people who will spend the holiday living in an aged-care facility rather than at home with their loved ones. A distressing situation, which need not be this way ... Research into the matter is clear - young people who live long-term in aged care facilities experience declining emotional, physical and mental health. But no one needs the research to tell us that ... Young people in nursing homes are subject to the same income and assets assessments relating to government assistance as other elderly residents. This can mean that a young person is up to $1,000 worse off per fortnight than if they were part of the NDIS ...

Ten Years of Progress (video 1m 50s)
NDIS, 1 December 2016

... Ten years ago, people with disability in Australia really only had access to a broken system.... The last ten years, what’s changed for people with disabilities is the Convention on the Rights of Persons with Disabilities was adopted and has now been ratified by 168 countries around the world. We’ve had the campaign for the NDIS, and that’s really brought disability far more to the centre of the conversation. We’re rolling out a scheme that’s based on the principle that people should get what they need, when they need it.

... So we have to change those community attitudes and I think that’s the responsibility of everyone in the community to do that ...


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

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

Disability Loop - a way to find out more about the National Disability Insurance Scheme (NDIS). Disability Loop is a project funded by the NDIS. It is run by, and for, people with disability and their allies.

Two other closed Facebook groups (only members can see the posts) that you might find useful for answering particular queries are:
  • NDIS Grassroots Discussion - a large group run for and by people with all kinds of disabilities, and welcoming of carers - the administrators are very experienced in managing discussions that can become robust at times, as criticism of the NDIS is raised
  • the newer and smaller I Love NDIS aims to promote discussion of individual's successes in putting their plans together and implementing them.

Friday, 13 January 2017

Weekend reading and viewing: 14 - 15 January 2017

I may not be much for words - but I got much to say
A music video, posted on Facebook by Open Future Learning on 12/13 January 2017
' ... in the end we're all or none free ...'

Adam's Notepad, 5 January 2017
... We’ve heard a lot of different things from a lot of different people. While some of those things have been less than helpful, some of them have been very beneficial and encouraging. It’s not surprising that some of the most helpful comments I have heard came from the parents of children with Down syndrome. I’d like to share some of that wisdom with you ...

Am I Doing It Right?: Special Needs and Siblings
Kelle Hampton, Enjoying the Small Things, 12 January 2017
... Do all siblings protect their toys and ward off any who dare get in their space? Of course. But in Nella’s case, interactive play with siblings and engaging communication that helps deepen sibling bonds is definitely more of a challenge and one that’s become more recognizable this year, especially between her and Lainey. It requires our family’s attention and support in creatively nurturing what we know is there–loyalty and a love so deep, you can’t even describe it ...

The Baby After My Baby with Special Needs ...
Happy Soul Project, November 2015
...I'm kinda thankful for having my last baby, after a baby with special needs. It's making everything more intense but it's also making me more grateful, more aware of every passing moment and more appreciative of what we've been through and what an absolute gift every baby and every day really is ...

“Mom, when is this Down syndrome going to be over?”
Phillip C Clarke, 3 November 2016
.... Sarah looked at my mom with tears in her eyes and said, “Mom, when is this Down syndrome going to be over? I don’t like it.” We all had tears in our eyes after hearing Sarah express her frustration. I realized that I had never truly understood just how aware she was ...

'Devil Boy': Down's syndrome in Sierra Leone
Olivia Acland, Aljazeera, 2 January 2017
In a country that demonises mental disabilities, a mother recalls the journey of her community's acceptance and remorse.

"I" versus "He"
Dave Hingsburger, Of Battered Aspect, 12 January 2017
... "Thanks for showing me how to do it!" he said. He was about to speak again but before he could, the worker with him said, "Do you wear gloves to help you, I didn't see?" I was about to answer when he spoke, his voice softly frustrated, "I was going to ask you what kind of gloves you are using ..." he'd obviously noticed my glove. Her voice entered again, "He's looking for a good set of gloves to use." His face closed down as she spoke ...

Embracing Success 2017: DS NSW education conference, early bird registration now open

23 and 24 MARCH 2017  
SMC Conference and Function Centre, Goulburn Street 
 Keynote speakers:
Dr Rhonda Faragher - senior lecturer in mathematics education, Australian Catholic University. Brisbane 
Dr Kelly Burgoyne - formerly at Down Syndrome Education International, currently Senior Research Fellow, Psychology, Australian Catholic University. Brisbane
Other speakers: 
Leading professionals from within the Department of Education and Training and the Catholic Education Office.
An essential two day conference for anyone working with a student with Down syndrome and suitable for educators working in all education sectors. Parents and carers are also welcome.

Thursday, 12 January 2017

People with Down syndrome

Forklift licence an opportunity for Sri Lankan migrant with Down syndrome
Stefan Armbruster , SBS News, 27 December 2016
Nilu Palipan is breaking new ground learning to drive a forklift in Brisbane, and she is looking forward to a brighter future in Australia. She has just completed her provisional driver’s licence, quite an achievement for the 22-year-old who has Down syndrome ...

Paul Daugherty, 9 December 2016
We make strides in small increments. Improving the lives and futures of our kids with disabilities is like walking the Appalachian Trail. Every day is a chance to take another step. We took a few recently.

Jillian got a second job, as a teacher’s assistant in the school system she attended. In addition to her duties in the athletic department at Northern Kentucky University, Jillian now works with 1st- and 2nd-grade students in the classroom. She reads to them, helps them with math and whatever else the teacher needs ...

Families work to provide opportunities for those with special needs
Tom Strong, The Beacon News, 20 December 2016
It would seem that Philip Weir is one of the busiest young men in town. At the age of 23, he holds down three part-time jobs in the Oswego area. And in his spare time, he serves as an usher at St. Anne Church and helps provide community service as a member of the Oswego Optimist Club ...

Jack Barlow: Breaking boundaries as first Cincinnati ballet dancer with Down syndromeCincinnati Ballet, 16 December 2016
After four years in Ballet Moves, a dance program for children with Down Syndrome and Cerebral palsy created by Cincinnati Ballet and Cincinnati Children’s Hospital, Jack has grown to love dance. His enthusiasm and hard work earned him a role on stage with Cincinnati Ballet during The Nutcracker, making Jack the first dancer with down syndrome to dance with the company ...

Watertown teen with Down syndrome turns love of dogs into robust family business
Molly Beck, Wisconsin State Journal, 26 December 2016
... It’s already dark on this Tuesday in late November — just before supper time — and the store is buzzing with the slamming of shopping carts and the beeping of checkout counters.

Gracie stops with her mom and dad at the store’s front counter to collect their payout — $260 in cash this week — and then the three haul a cardboard box to the store’s pet supplies aisle to stock five shelves that the store reserves for Gracie’s Doggie Delights, her family’s new business ...

Franke James, 5 December 2016
How does a Canadian with an intellectual disability fight back when their rights are violated? Four recent developments have me thinking optimistically about signs of change for Canadians with intellectual disabilities, and my sister in particular…

Wednesday, 11 January 2017

Book reviews

Book review - 'The Shouted Goodbye' by Jeremy Ward
Jim Simpon, NSW CID,
Jeremy Ward's personal memoir of raising a child with a disability, The Shouted Goodbye is the story of his daughter, Mena, who grabbed all of life’s opportunities, and his and his wife's determination that she have a full and inclusive life.

This is a must-read book for anyone who believes in a fully inclusive world for people with disabilities. It should also be compulsory reading for the many teachers, disability workers, bureaucrats and politicians who need to better understand and embrace this vision ...
Amy Silverman, Woodbine House, 2016
Review by Dotty Robison, Federation for Children with Special Needs, Summer 2016
This book is heartfelt and almost gritty in its honesty. Amy Silverman, journalist and parent of a daughter with Down syndrome, bares her soul in her personal reflections on topics from the moments after her daughter Sophie was born, to thinking back to the weeks before her birth when she knew Sophie might have Down syndrome ...

News and commentary on education

Catia Malaquias, Starting with Julius: IncludedEd, 18 December 2016
...  A long list of adverse results in comparison to the “average” learner without much more goes a long way to telling a parent and the student themselves that they do not belong in that learning environment ...

Thoman Hehir, Silvana and Christopher Pascucci and Abt Associates, for Instituto Alana, August 2016
... In this report we sought to identify research that demonstrates the benefits of inclusive education not only for students with disabilities, but especially for students without disabilities, since evidence of benefits for the former is already widely known. This report is the result of a systematic review of 280 studies from 25 countries. Eighty-nine of the studies provide relevant scientific evidence and were synthesized and summarized below. 

There is clear and consistent evidence that inclusive educational settings can confer substantial short- and long-term benefits for students with and without disabilities ...

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

Exclusion practices – dubbed “gatekeeping” – include: advising parents to send their child to another school that could better support them; allowing a child to attend a school only on the days that funding is available; and asking parents to pay more so the school can employ support staff or purchase equipment. Although this happens across all school types, it tends to be more prominent in, and easier for, non-government or private schools.

Matthew Knott, Sydney Morning Herald. 20 December 2016
Students with disabilities could miss out on hundreds of millions of dollars in extra funding because of serious concerns about the reliability of a landmark national audit into the number of school children with special needs ...
‘Naughty’ classes are wrong: here’s what the research says
Linda Graham, Australian Association for Research in Education, 31 October 2016
A primary school in Victoria made the news recently when it created a separate “naughty-naughty” class for children experiencing learning and behavioural difficulties. It is not the first school to have done this and it is unlikely to be the last ...

Finding support when you least expect it
Inclusive Education Canada, 8 November 2016
In October 2016, Gordon Porter, Director at Inclusive Education Canada, and Debbie met for the first time while Gordon was promoting inclusive education at a series of speaking events in Northern Ontario. Debbie told Gordon he had a significant impact on the course of her life despite having never met in person ...

Tuesday, 10 January 2017

Photographers: My Perspective 2017 entries are open

Entries are now open for the annual UK competition for photographers with Down syndrome, My Perspective, and close on 28 April 2017. The competition is hosted by the Down's Syndrome Association in London and is open to international entries.

These articles are about two previous My Perspective award winners:

Family Advocacy event update

Full details and fliers are now available for this Family Advocacy event for families early next month, and registration is open:

Wednesday 8 February 2017 - Rosehill (Parramatta)
Family Advocacy - Professor of Inclusive Education, Mara Sapon-Shevin presents a workshop on positive social inclusion in the regular class for students with disability.
This workshop is for families of children with disability only. The overall focus of this workshop is on inclusion for students with disability in school and will be relevant for all families with school aged children. However, be aware the strategies shared focus mainly on primary school settings.

Monday, 9 January 2017


Catia Malaquias, Starting with Julius, 30 December 2016
Corporations have generally taken narrow and compliance-driven approaches to disability. Disability, when expressly recognised by a corporation’s policies, is often noted but not addressed for implementation or data collection. Diversity policies for example often do not even mention disability as a form of diversity, and very rarely provide for targets, monitoring or data collection in the same way as they do for say gender diversity ...
Charlotte McClain-Nhlapo, World Bank, 6 December 2016
... While urbanization brings people closer to new economic and sociocultural opportunities, persons with disabilities still face a range of constraints in many cities, such as inaccessible buildings and public spaces, limited transportation options, inaccessible housing, and barriers in using technology-enabled virtual environments. These urban constraints have a significant impact on those living with disabilities in terms of mobility, ability to engage in education and skills development, employability and income generation, and larger social and political participation ...

It’s Time to Include Disabilities in Diversity
Janice Linz, Huffington Post (blog), 15 December 2016
Article after article discusses our need to ensure diversity, but they rarely mention disabilities. It’s as if people with disabilities are an afterthought (or more accurately, a forgotten thought). If the omission is mentioned, people often get defensive, as if they are being accused of insensitivity. But if another protected class like gender, race, religion, or sexual orientation were omitted, people would be up in arms about that ...

It takes a village to raise a child who helps others
Luisa D'Amato, Waterloo Region Record, 17 December 2016
Dylan Duncan was physically abused as a child. He was taken from his family, and grew up in a foster home. At 19, he lives with developmental disabilities.

What picture are you seeing, now that you have these facts? Someone who will need help all his life? Or someone who freely gives it?

Why Australia needs its first ambassador for disability inclusive development
Erin Ryan, Sight, 15 December 2016
People with disability were invisible in the world portrayed by the Millennium Development Goals. But this doesn’t reflect the world we live in; globally, one in seven people has a disability. In developing countries, this figure is even higher, at one in five. This erasure prevented people with disability from benefitting equally from efforts to reach the MDG targets ...

National Disability Strategy 2010-2020 to build inclusive and accessible communities: submissions invited

The Senate Community Affairs References Committee is currently conducting an inquiry into
The delivery of outcomes under the National Disability Strategy 2010-2020 to build inclusive and accessible communities

(one of six priorities identified in the strategy)

The terms of reference are:
  • the planning, design, management, and regulation of:
  • the built and natural environment, including commercial premises, housing, public spaces and amenities,
  • transport services and infrastructure, and
  • communication and information systems, including Australian electronic media and the emerging Internet of things;
  • potential barriers to progress or innovation and how these might be addressed;
  • the impact of restricted access for people with disability on inclusion and participation in economic, cultural, social, civil and political life; and
  • any other related matters.

Submissions should be received by 17 March 2017. The reporting date is 13 September 2017.

Friday, 6 January 2017

Weekend reading and viewing: 7 - 8 January 2017

The aging of the population with Down syndrome is a positive sign
Brian Skotko, Stat News, 4 January 2016... The most valuable resource that programs like ours have for improving the lives of people with Down syndrome are individuals like Ben and Kristin. No one can completely attest to a life with Down syndrome unless they are actually experiencing it ...
Disability and Media: Inspiration Matters
David Perry, How Did We Get Into This Mess, 20 December 2016
Here's a nice story about Craig Blackburn, a man with Down syndrome who plays Santa. It could so easily veer fully onto the Inspiration Porn side of the disability news spectrum (it's not an either/or), and the title does go that way. "Metairie man with Down syndrome spreads cheer now and throughout the year" suggests that the story will be about how people feel about the man, rather than centering him ...

Brave mum shares why she almost gave up rare tins with Down syndrome
Julia Jensen,, 21 December 2016
... Because of Julie’s age, she knew that the likelihood of having multiples or a child with Down syndrome would be greater, but she never expected both to happen ... According to the US National Down syndrome Society, by the time a woman is 40 years old, her chances of having a baby with Down syndrome are 1 in 100. But the chances of having non-identical twins like Milo and Charlie is nearly 14 in a million ...

Down’s syndrome: more of an identity than a disease? How a mother taught me more about Down’s syndrome than any lecture
George Gillett, Student BMJ, 20 December 2016
... As a student, my only encounters with Down’s syndrome had been in lecture theatres and textbooks. My revision notes featured more information about investigations, diagnosis, and management than any human experience of the condition. I would have found it easier to recall that 90% of Down’s syndrome pregnancies end in termination than to give the name of someone I had met with the condition ...

Punk Therapy (audio file, podcast and transcript)
Emma Tracey, Ouch Talk Show (BBC)  21 December 2016
What do you when you’ve turned 18 or finished formal education if you’ve got learning disabilities? Electric Umbrella sought a solution and wound up with an amazing Christmas single, and they’re here on a quest to make Christmas As A Punk number one ...

A brother's loving film about his sister with Down syndrome: Kelly's Hollywood
Love That Max, 21 December 2016
As parents, we do our best to make our children happy, which includes indulging their interests/obsessions. Over the years, Dave and I have bought a whole lot of purple objects for Max during his purple phase, taken him repeatedly through car washes during his car wash phase, and basically camped out at our local fire house so he could hang with the guys ever since he decided he was going to be a firefighter.

Of course, this aim to please isn't limited to moms and dads, as a new documentary beautifully shows. Directed by Brian Donovan, Kelly's Hollywood tells the story of his sister's aspirations to become an L.A. diva, and his drive to make it happen. Kelly has all the makings of a Hollywood character—she's funny, charming and people are drawn to her. She also happens to have Down syndrome ...

Centrelink debt recovery fiasco must be suspended: Disabled People's Orgnisations Australia

5 January 2017

Disabled People’s Organisations Australia (DPO Australia) calls for the Centrelink debt recovery process to be immediately halted, amid concern about the impact on people with disability.

“We are concerned that the current debt recovery process, that uses automated data matching, is particularly unfair for people with disability,” says Matthew Bowden, Co-CEO, People with Disability Australia, and spokesperson for DPO Australia.

Centrelink has recently begun to use data from the Australian Tax Office to check records about people’s income, without staff involvement or oversight. People have received debt notifications, sometimes going back six years and have had a limited time to respond.

“Many people with disability rely on social security payments to make ends meet. For those that work in casual or contract work, this new system appears to be particularly problematic,” said Mr Bowden.

“The majority of people with disability being reviewed will have been entitled to social security payments and have done nothing wrong. Cutting social security payments to recover debts in this way could leave people with disability substantially worse off, and we already know that almost half of all people with disability live in poverty. People with disability are being made more vulnerable by how these policies are implemented.

“Springing this kind of change on people just before Christmas, with no additional resources to assist them, is unacceptable.

“People with disability may need more time and support to understand the information and respond, may need the information in different, accessible formats and should have increased advocacy available to engage with the Centrelink system and manage such a stressful situation," said Mr Bowden.

“DPO Australia is calling for the Federal Government to immediately suspend this automated debt recovery system and start to sort out the mess that has been created.

“Advocacy support needs to be significantly ramped up to make sure people with disability are not disadvantaged by poorly planned and implemented changes like this in government policy,” said Mr Bowden.

Disabled People’s Organisations Australia (DPO Australia) is an alliance of four national Disabled People’s Organisations (organisations made up of and led by people with disability).
DPO Australia was founded by, and is made up of the First Peoples Disability Network Australia (FPDNA) representing Aboriginal and Torres Strait Islander people with disability, the National Ethnic Disability Alliance (NEDA) representing culturally and linguistically diverse people with disability, People with Disability Australia (PWDA) a national cross disability organisation and Women With Disabilities Australia (WWDA), the national organisation representing women and girls with disability.

Thursday, 5 January 2017

News and commentary from the broader disability community

B and T Magazine, 19 December 2016
The Attitude Foundation together with its principle partner ANZ, have selected award-winning production company Taste Creative to film a television series promoting the valuable contribution of people with disabilities within Australian communities.

This forms an important milestone for the Foundation which since being founded in 2014 by Graeme Innes, Australia’s former Disability Discrimination Commissioner, has worked to secure funding from industry and government for the production ...

The hidden story of sexual abuse
Ginger Gorman, Tierney Bonini, ABC Lateline, 30 November 2016
Jane Rosengrave has an intellectual disability and takes Lateline back to the institution in regional Victoria where she claims she was sexually abused by multiple perpetrators ...

Prison Is Not The Place For People With Disabilities
Rachel Siewert, Huffington Post, 30 November 2016
People in Australia are being detained simply because there is nowhere else for them to go ...

At least 100 Aussies with cognitive disability held in jail indefinitely
Shalailah Medhora, ABC Triple J, 11 December 2016
Swift action is needed to ensure that people with cognitive impairments and acquired brain injuries aren't held in jail indefinitely, a disability rights group says.

Earlier this month, a Senate inquiry into indefinite detention found there are at least 100 people who are in jail for an unspecified period of time because they did not have the mental capacity to plead to a crime. That includes people with personality disorders, foetal alcohol spectrum disorder, dementia and brain injuries resulting from assaults and car accidents ...

Punk and disability inclusion have more in common than you may think
Diana Hiscock, HelpAge, 2 December 2016
Attitude can influence our perception of events and even has the power to shape our behaviour - even in immensely challenging circumstances. Working as we do with older people, people with disabilities, and indeed older people with disabilities, understanding this link between attitudes and behaviour is pivotal in getting our job done ...
Josephine Maguire-Rosier, Sydney Morning Herald, 3 December 2016
... Sure, I could explain to you about ramps and lifts, about tactile signage, or easy English, closed captioning, or Auslan interpreting and, following that advice, would take you a lot further than where you are now. These are all things that you should do. However, providing people with nice, easy checklists glosses over one fundamental aspect of disability and, indeed, humanity – we are all different ...

Latest additions to 'events' pages

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

    International expert on inclusive education: Mara Sapon-Shevin
    Wednesday 8 February 2017 - Rosehill (Parramatta)
    Family Advocacy will host an event with Mara Sapon-Shevin, Professor of Inclusive Education at Syracuse University in early 2017. Mara is a specialist in diversity and social justice issues, including full inclusion, bullying and harassment and cooperative learning. 

    Disabled Surfers' Association of Australia - 2017 events
    January - March 2017 dates and venues are listed by State and region.
    The DSAA is creating opportunities for everyone, including our disabled participants and able bodied volunteers, to experience our unique, safe and happy surfing events, whilst under complete supervision from our trained Team Leaders and Beach Marshalls. 
    We invite you along for this magical journey that many have already experienced over the past thirty years, without any pressure to win gold, just having fun and making new friends in your local community and around Australia and New Zealand.

    “Ready, Set, AACtion” - AGOSCI 13th Biennial Conference
    17 - 20 May - Melbourne
    The AGOSCI Conference theme reflects our need to be ready for the arrival of the National Disability Insurance Scheme and the effects this will have on the lives of children and adults with little or no speech. “Ready, Set, AACtion” will showcase the best products and services, the latest research and the most inclusive communication practices for people with little or no speech. 
    The conference is an opportunity for people who use AAC, their families, friends, work colleagues, and people who work within the area of Augmentative and Alternative Communication to come together to share their knowledge and skills. 

    Sunday, 1 January 2017

    Happy New Year!

    Sunday, 25 December 2016

    Merry Christmas 2016

    Thursday, 22 December 2016

    Best wishes for Christmas and New Year - happy summer holidays!

    Regular posting will resume early in 2017.

    The Down Syndrome NSW office will close on Thursday 22 December 2016
    and will reopen on Monday 9 January 2017.

    Down Syndrome NSW will continue to provide emergency support and assistance for new parents throughout the holiday break. Please contact us via Facebook private message in this instance, or call the office on 02 9841 4444 and leave a message and someone will return your call. We will attend to all other enquiries on our return on 9th January, 2017.

    Wednesday, 21 December 2016

    People with Down syndrome

    James is crashing barriers
    Barossa Leader, 2 December 2016
    “Life’s good,” says 25 year old James White. The Nuriootpa resident couldn’t be happier after being appointed a Member Ambassador for Down Syndrome SA, one of only two to be given the 12 month role.

    “I’m very proud – very happy,” said James ...

    Tom has a paid job at The Environment Agency’s National Laboratory Service

    Down's Syndrome Association (UK), 8 November 2016
    Tom has lots of work experience, including in catering, but had been looking for a more permanent work challenge for some time. Although Tom has plenty of transferable skills, he faced many barriers to the workplace ...

    Doctors said he would never hold a job — now he's retiring after 35 years
    Colleen Jones, CBC News, 15 December 2016

    The energy he brings and surrounds himself with is contagious. After Andrew MacEachern was born with Down syndrome in 1960, medical experts told his father he would never learn to read or write, or ever hold down a job.

    He proved them wrong. On Wednesday, after 35 years delivering supplies around the Victoria General hospital in Halifax, MacEachern was celebrated by his co-workers at a well-earned retirement party ...

    How a man with Down syndrome achieved his dream of becoming a firefighter
    Brian Brueggemann, Charlotte Observer, 16 December 2016
    Jason Eagan is a firefighter in Sandoval, Illinois, and has Down syndrome. Lt. Matt Horn says Jason is a valued member of the volunteer department ...

    Tuesday, 20 December 2016

    Journal of Mental Health for Children and Adolescents with Intellectual and Developmental Disabilities: An Educational Resource Volume Seven, Issue 3/4, December 2016

    The NSW School-Link Initiative has been addressing mental health in schools since 1999. The Children’s Hospital at Westmead (CHW) has recognised the potential to further develop the existing School-Link Initiative by focusing on students with an intellectual disability.

    The latest edition of the Journal of Mental Health for Children with Intellectual and Developmental Disabilities is now available on the School-Link website.

    Highlights include:
    • The Future of Our Children’s Mind, Spirit and Soul: Will the digital revolution destroy them or can schools grow them? by David Dossetor 
    • Notes from the 19th Society for the Study of Behavioural Phenotypes (SSBP) International Research Symposium by Peter Wurth 
    • The Medicine Cabinet: Atomoxetine by Judy Longworth 
    • Addressing cardiometabolic risk factors in people with an intellectual disability by Jessica Walsh, Professor Katherine Samaras and Professor Julian Trollor 
    • The 15th World Congress of the International Association for the Study of Intellectual and Developmental Disabilities (IASSID) by David Dossetor 
    • IASSID Symposium on Quality of Life in Children with Intellectual Disability by Donna White 
    • A report on the inaugural meeting of the Bowral Mental Health Intellectual Disability Professionals Network 
    • Resource Spotlight: Carer Checklist by Carers Australia 
    • KidsQuit 
    School-Links encourages readers to circulate this link to your networks or anyone else who may be interested and to sign up to the e-list.

    National Disability and Carers Advisory Council Communiqué

    The National Disability and Carers Advisory Council (NDCAC) held its inaugural meeting on Wednesday 14 December 2016 in Canberra.

    At its first meeting the Council discussed and agreed on the Terms of Reference and the role of Council in a number of key policy areas:

    • National Disability Strategy (NDS) Reinvigoration
    • National Disability Insurance Scheme – Transition 
    • Disability Employment Services Reform
    • Carer Reform and the Integrated Plan for Carer Support Services
    • Regulatory Reform
    • Working Groups

    Monday, 19 December 2016

    BSWAT court case result

    Many people with Down syndrome working in Australian Disability Enterprises could be eligible for payments. Information from People with Disability Australia, 16 December 2016:
    Lengthy and dedicated advocacy work has resulted in a win for employees with disability. 
    Today the Federal Circuit Court of Australia has approved the settlement of the class action between the Commonwealth and employees of Australian Disability Enterprises (ADEs) whose wages had been assessed under the Business Services Wage Assessment Tool (BSWAT). 
    The decision is worth tens of millions of dollars that will benefit employees with disability working in ADEs around Australia.

    PWDA encourages all eligible employees of Australian Disability Enterprises (ADEs) to register under the Business Services Wage Assessment Tool (BSWAT) Payment Scheme. This scheme provides a one-off payment to eligible ADE employees. 
    For information on the BSWAT Payment Scheme, you can call the AED Legal Centre on (03) 9650 2533 and leave a message or email 
    You can register by visiting the website at:, phoning the BSWAT Hotline on 1800 880 052, or email

    New books from Woodbine House

    New titles recently released by specialist publishers Woodbine House:

    Whole Child Reading: A Quick-Start Guide to Teaching Students with Down Syndrome and Other Developmental Delays 
    Natalie Hale, 2016
    Discover the keys to teaching children and adults with Down syndrome and other developmental disabilities how to read for meaning. Written for today's busy parents and teachers, this easy-to-use guide explains how to "go in through the heart" to hook beginning and struggling readers with high-interest, individualized materials—flashcards, personal books, and modified trade books. The simple strategies described are designed to "teach to the brain" and are based on research about how we learn most easily and naturally ....
    • Kindle/eBook and paperback editions are available. 

    Fine Motor Skills for Children with Down Syndrome: A guide for parents and professionals
    Maryanne Bruni, third edition, 2016
    The popular book, Fine Motor Skills for Children with Down Syndrome is now available in a completely revised third edition. The author, an occupational therapist and parent of an adult with Down syndrome, describes how the characteristics of Down syndrome can impact the acquisition and progression of fine motor skills. She presents a thorough overview of the building blocks of fine motor development, from infancy through to adulthood ...
    • Paperback 
    Woodbine House does not accept orders to ship to Australia, but other sources are readily available that ship to and within Australia.

    Friday, 16 December 2016

    Weekend reading and viewing: 17 - 18 December 2016

    Michael Berube: The Value and the Virtue of Raising a Child with Down Syndrome, (Audio 33m)
    Lindsay Beyerstein, Point of Inquiry, 5 December 2016
    ... Berube tackles the misconceptions about intellectual disability from the perspectives of both a scholar of disabilities and that of a father. He challenges the misconception that intellectual disability detracts from the value of a life, as exemplified by his son Jamie, who Berube describes as witty, inquisitive, and full of a love for life. Berube asserts that like most children, when given ample amounts of love and attention, kids with Down syndrome have the best fighting chance at meeting their full potential and living a successful, happy life. Berube calls upon bioethicists, politicians, philosophers, and all of us to rethink how we approach disability, and advocates for changes that will move us towards a more inclusive society ...

    Julius a model example of celebrated diversity
    Amanda Keenan, The West Australian, 13 December 2016
    A few episodes of Sesame Street and a benign blue box of nappies. That wasn’t everything but it was the beginning of something.

    Catia Malaquias was at home with her baby boy Julius and eldest daughter Laura. What Sesame Street had that the nappy box didn’t was suddenly glaringly, infuriatingly apparent. The cheerful kid with Down syndrome reciting his ABCs in the brownstone-lined land of Sesame Street resonated with Catia in a way that the toddler on the nappy box — the child on the baby food jar, the family in the cereal ad — couldn’t possibly ...

    Bonding In A Checkout Line
    Erika Lantz, WBUR-FM Boston NPR 6 December 2016
    ... Right away, Sydney said, “She has Down syndrome. She has a big heart, like I do.” Suzie pushed the cart toward Sydney, and Sydney wrapped her in a hug. Then Sydney asked if Carly knew any sign language, and before long they were swapping different signs ...
    Holly O'Flinn, Lincolnshire Live, 8 December 2016
    A woman with Down's syndrome from Mablethorpe, who has just celebrate her 81st birthday, has defied all the odds - because doctors said she wouldn't live beyond 20.

    Julia Pittaway, who was born in 1935, is believed to be the oldest woman in the world with Down's syndrome as she hits the grand age of 81 ...

    Recreating Down Syndrome in Mice (audio: 12m 16 s)
    Witness, BBC World Service, 9 December 2016
    In 2005 British scientist Elizabeth Fisher and a colleague successfully transplanted a human chromosome into a mouse for the first time. It transformed medical research into the genetic condition Down Syndromethat affects millions of people worldwide. Professor Fisher tells Louise Hidalgo about the challenges researchers faced and their thirteen-year struggle to create the first Down Syndrome mouse ...

    Kat Abianac, Parker Myles, 8 December 2016
    6 years ago, Tyler Klefot’s brother entered the world in Louisville, Kentucky. He discovered he was a life-changing little guy. And the more he thought about it, the more he wanted people to know what he now knows. Then this big brother decided to share his thoughts about the last 6 years, on his Facebook page. Tyler wanted others to know that the more time he spent with Jonah, he discovered a secret ... His brother is his teacher. And he explains here exactly why ...

    Anne Suslak, Buzz Feed, 8 December 2016
    We may have missed out on a traditional sibling relationship, but my twin brother’s cerebral palsy, hydrocephalus, and epilepsy has far from ruined our lives ...

    A World that Wants Me In It': The Case for Conserving Disability
    Rosemarie Garland-Thomson, ABC Religion and Ethics, 1 December 2016
    ... Arendt's and Hubbard's ethical assertions address the central question of my current scholarly project: why disabled people should be in the world ...

    Worlds are spaces, complex material environments made up of people, the material artefacts we make and use, the geological habitat and other living things ranging from forests to viruses. Our lives occur in these spaces; how we think and what we do shapes them.Disability offers a good case study for investigating current and future world building. Modern cultures are now undertaking two contradictory world-building initiatives that are expressed in social, legislative, material, cultural and attitudinal practices ...