Thursday, 23 February 2017

Education matters

Cathy Molitoris, Lancaster Online, 18 February 2017
... Students in the Career and Life Studies program are part of person-centered planning to identify the hopes and dreams of each student, Bechtel says.

“This is a very significant experience for the student and their family/friends because many students have never been asked about their hopes and dreams,” Bechtel says. “In K-12, much of their day and life have been planned out and structured according to an IEP (Individualized Education Program) outlining the services and paid supports available for a student. Thinking about college and their future career was not on their radar until the barriers to access came tumbling down with the creation of post-secondary education programs.” ...

Students with a disability face massive funding shortfall, Education Council figures suggestNorman Hermant, ABC AM, 16 February 2017
Students with a disability face an enormous funding gap in Australian schools, new figures from the Productivity Commission and the Education Council appear to have shown ...

A principal’s role in promoting inclusive education
Brett Henebery, The Educator, 13 February 2017
Research has shown that when included in the mainstream school system, children with a disability thrive in their learning.

This practice is called inclusive education, which is defined as education free from discriminatory beliefs, attitudes and practices, including free from ableism. Inclusive education requires putting inclusive values into action to ensure all children and adults belong, participate and flourish ...
Global Down Syndrome Foundation, February 2017
It is at this time of the year, that I tend to find families entering into more challenging conversations with their school teams regarding instruction, growth and next steps for their child. Here are a few tips to help with these courageous conversations ...

'Not just a nice idea': The importance of inclusion in and beyond the classroom
Anna Delaney, CBC News, 11 February 2017
.. Pam Anstey, the executive director of the Newfoundland and Labrador Association for Community Living, says she believes strongly in the benefits of an inclusive classroom.

"Inclusive education works. It's been proven over and over and over again," she said. "It is the best system to create and foster diversity and belonging." ...

Our Top 10 Free Resources for Inclusive Schools Week 
Brookes Publishing, 6 December 2016
Over the past few years we’ve built up a big collection of free resources on inclusive education, and this seemed like a great time for a top-10 list ... webinars, book excerpts, printables, and articles on some of the most important topics in inclusive education. Bookmark this post to keep these resources at your fingertips, and share them with your colleagues who work toward a fair and equitable education for all students ...

NSW Young Carer Leadership Program 2017 – applications open

Young Carers NSW is a Carers NSW program for carers aged 25 years and under. Applications are now open for the 2017 Young Carer Leadership Program:
Are you passionate about your role as a young carer? Would you like to gain valuable leadership and presentation skills? Would you like to help raise awareness of young carers? If so, we want YOU to become a Young Carer Leader!!

The Carers NSW Young Carer Leadership Program is designed to give young carers, like you, a stronger voice in the community. Each year, we offer up to 20 places to passionate young carers from across NSW. Selected applicants are invited to Sydney for a jam packed 4 day introductory workshop to leadership, media and presentation skills. Not only will you learn and develop new skills, you’ll also get to meet other young carers and check out some of the sights of Sydney! 
Young carers aged 16-22. Young carers from all cultural backgrounds and living all across NSW (including regional and remote areas) are encouraged to apply! 
The Young Carer Leadership Program will take place between Monday 10th April 2017 – Wednesday 12th April 2017.

Applications are open until Sunday 12th March 2017!

Wednesday, 22 February 2017

Health matters

Twenty Things I Want My Health Care Provider to Know
A series of videos from the Adult Down Syndrome Center, published on their Facebook page. The quickest way to reach them is via this link, or via the 'Videos' tab in the left column of the ADSC home page :
 Before We Get Started - published October 2016. A 'welcome to the series', includes a brief history of the Adult Down Syndrome Center. (3m 6s)
It Is More Than Just Language - published 13 February 2017. It is about language but it is also a philosophy on interacting with people with Down syndrome. (1 m 10s) 
Common Characteristics of People with Down Syndrome - published 16 February 2017. All is not Down syndrome. (3m 33s) 
Life Expectancy and Two Syndromes - published 19 February 2017. People with Down syndrome are living much longer than in the past and despite the same genetics from years ago, the lives of people with Down syndrome look much different than they did in the past. (7 m)

Keratoconus and Down’s syndrome
Stephanie Campbell, Down's Syndrome Association (London), 3 January 2017
Keratoconus is a condition in which the cornea, the transparent ‘window’ at the front of the eye, grows abnormally thin and into a cone shape, causing distorted vision.

... Until recently, there was no treatment for early stages of keratoconus, and nothing to be done about it until vision was affected, when contact lenses can be a real help. In cases of severe progression, scarring of the cornea meant that a corneal transplant was the only means of providing reasonable vision.

Now, there is a new treatment becoming available, called collagen cross-linkage therapy that can halt the progress of the abnormal growth and prevent sight deteriorating ...

Lack of Specialist Clinicians Failing Australians with an Intellectual Disability
Simon Wardale, Probono News, 3 October 2016
Bluntly speaking, complex and challenging behaviours are not very well understood, even within the disability sector, and that situation is borne out by the training – or lack thereof – available for Australian practitioners ...
Stephen Singer, Hartford Courant, 3 January 2017
... At age 4, Talia Duff, who was born with Down syndrome, began to slowly lose motor milestones that were hard to achieve initially. Doctors believed her motor skills were delayed because of her Down syndrome ...

Free NSW forums on NDIS - Every Australian Counts

The Every Australian Counts team will be hitting the road from March – May presenting NDIS information forums in the NSW regional areas where the NDIS will be rolling out from July.

Topics include:
  • What the NDIS is, why we need it and what it means for you
  • The changes that the NDIS brings and how they will benefit you
  • How to access the NDIS and get the most out of it 
These free forums are designed for people with disability, their families and carers, people working in the disability sector and anyone else interested in all things NDIS.

Please register for tickets and let Every Australian Counts know about any access requirements. All the venues are wheelchair accessible and Auslan interpreters are available if required. Please contact us when you book if you have specific access requests.

We’ve locked in the following locations:
Casino 8th March
Grafton 9th March
Coffs Harbour 14th March
Port Macquarie 15th March
Wagga Wagga 23rd March
Orange 5th April
Dubbo 6th April
Nowra 2nd May
Wollongong 3rd May
Albury 9th May
Broken Hill 16th May
We will be holding Sydney metro forums too – we’ll have those dates to you ASAP.

Click on a link above to register online now!

Tuesday, 21 February 2017

DSA National Survey

20 February 2017

Down Syndrome Australia and the local Down syndrome organisations are collecting information through a national survey. Your feedback will be very helpful to us. It will help us make sure our services and supports meet your needs. 

Your feedback will also help us to represent you on national issues, including advocacy to ensure the NDIS meets the needs of people with Down syndrome.

We want to hear from our members but also people who are not currently members of their local organisation. The survey takes about 10 minutes.

If you prefer an Easy Read version of the survey that can be downloaded here.

If you have any questions about the survey please contact

People with Down syndrome in the media

Student with Down Syndrome told she would never talk gives first public speaking address to hundreds
Emilie Ng, The Catholic Leader, 16 March 2016
Olivia Hargroder is a self-confessed “chatterbox”, but she was never expected to learn to speak.
Born with Down Syndrome, the 16-year-old underwent major heart surgery and was not expected to live ... Almost 16 years after the doctor’s original prognosis, Olivia took centre stage at at her first speaking engagement at a national education conference last week “to teach the teachers” about how to treat children with Down Syndrome.

Model with Down syndrome launches design label at New York Fashion Week
Patricia Reaney, Reuters, 13 February 2017
... The Australian-born model challenged fashion industry norms with her first catwalk appearance in 2015 and is credited with changing perceptions about people with Down syndrome. She hopes to do the same with her new label, 21 Reasons Why by Madeline Stuart ...

Kitchener yoga instructor with Down syndrome pursues her dreamsValerie Hill, Waterloo regional Record, 16 February 2017
If anyone can bust stereotypes about people with Down syndrome, it's Karen Lord.

The feisty 38-year-old lives in her own apartment, has a new boyfriend, works a couple of part-time jobs in the service industry and she has travelled to England on her own to visit a friend ...

Down syndrome won't keep me down: four friends open own pizza business!Zayaan Schroeder, Parent 24, 17 February 2017
In Argentina, four friends Mauri, Leandro, Franco and Mateo were just a little tired of the social and work-related discrimination that came along with having Down's syndrome ...

Runner hopes to be first woman with Down syndrome to finish Austin Marathon
Amanda Brandels,, 15 February 2017
This weekend the Austin Marathon will test the strength and endurance of thousands of athletes. One of those runners is 26-year-old Kayleigh Williamson, who hopes to set a record of her own for the city. She has Down syndrome and was inspired to run long distances because of her mother. Williamson trains at RunLab Austin, working with specialists on her stability and technique ...
Pauline Garcia makes her own way
David Roza, The Elsworth American, 18 February 2017
Every Monday and Wednesday since 2015, 21-year-old Pauline Garcia has worked at the Down East Family YMCA’s Early Learning Center, where she looks after preschoolers as a teacher’s assistant.

She reads books to the kids, sets up stations where they can play, helps them put their winter clothes on and keeps them focused when the teacher is talking. Keeping an eye on 15 to 18 small children is an exhausting task for anybody, but Garcia has to work with an extra challenge. She has Down syndrome, which can make it harder for her to stay focused during an eight-hour work day ...

Monday, 20 February 2017

Petition to end preventable deaths in NSW: last few days to sign

You can still sign this petition to help address the terrible and sometimes fatal discrimination experienced by people with disability in health and hospital settings, before this Friday when Christine and Erin will present our petition in person to the NSW Minister for Health, Brad Hazzard:

... NSW Council for Intellectual Disability is calling for proper investment in the health of people with intellectual disability so that we can end the terrible number of Australians with intellectual disability dying from preventable illness. 
We need the NSW State Government to commit $50 million per year for 10 years to put an end to the high numbers of preventable deaths for people with intellectual disability in NSW ...

Movement and Music Sessions for Young People with Disability

The Australian Chamber Orchestra has been offering the ACO Move program for several years, under the guiding hand of Dean Watson. Applications are now open for the 2017 series:
ACO Move is a series of sessions for people with disability integrating movement and live music. Participants work with movement facilitator Dean Watson together with ACO musicians and a percussionist through a series of task-related exercises designed to develop physical movement responses to live music.
Sessions are held in the ACO Studio at Circular Quay and at the Sydney Opera House and are free of charge. Participants with experience in movement and music are encouraged to apply. 
Details and link to 2017 Application Form 
For further information and to apply, please email

Friday, 17 February 2017

Weekend reading and viewing: 18 - 19 February 2017

In this clip from BBC Radio 5 live, watch as Polly Gibson retells the story of her ‘love’s dream’ wedding day to husband Joe Minogue. 
The couple, who both have Down's Syndrome married in 2016 in front of 200 friends and family members. 
"WedFest" featured a unicorn throne and singing waiters as well as a three-tiered sprinkle cake. 
“It feels like love’s dream," says Polly. “The best thing in the whole wide world.”
BBC Breakfast, 
14 February 2017 (video 2m 29s)

Being a sibling of someone with physical, mental, or emotional challenges frequently leads to becoming more patient and accepting of differences. As a result, siblings of children with disabilities are often more empathetic and kind. But they may also have other emotions when their sibling needs extra time and attention from their parents. Sometimes, a typical sibling may feel embarrassed by their brother or sister’s appearance or behavior. They may even feel guilty, isolated, and worry about their sibling’s future ...
Pacer Center on 
10 February 2017
... ‘This is me’ was produced for our 10th anniversary and is a celebration of our children’s achievements. The sentiment of the film is positivity, opportunity, hope and aspiration. Our ambition is that the viewer will look beyond any outdated DS labels and start to see children who have Down syndrome as individuals, each making a valued contribution to their communities. The film clearly demonstrates the individuality, unique character and personal achievements of each of the children as well as reflecting their hopes and dreams ...
This is me (video 5m)
PSDS, October 2016
"I told my brother that if his child is like me, it's okay to abort," said Pete, shocking me into next Tuesday ...
Naomi Chainey, Daily Life
15 February 2017
The Council is partnering with national learning disability charity Mencap to explore prenatal genetic screening with people with Down’s syndrome. The views gathered will inform the Council’s forthcoming report on non-invasive prenatal testing (NIPT). 
Some of the genetic variations that NIPT can test for are associated with a learning disability, such as Down’s syndrome. Though people with these variations have an important interest in the debate on NIPT, their views often go unheard. The Council and Mencap have commissioned Dr Barbara Barter (Clinical Psychologist) to carry out a series of one-to-one interviews with people with Down’s syndrome over the coming weeks. People taking part have been recruited with the support of advocacy and campaigning organisations across England ...
Nuffield Council on Bioethics, 1 December 2016

People with Down syndrome on Humans of New York
Popular Facebook page, Humans of New York, has been posting from Argentina over the last week. On 10 February a post featured a young man with Down syndrome, and his mother, and generated many positive responses from other families with lots of photos, potentially reaching a very large international audience.

Open Sydney casting call

From Bump Models:
  • Child with a disability, aged 4 - 7
  • for Easter campaign - retail brand TV commercial
  • male or female - cute, diverse kids, involves pretending to sleep
  • the kids may be required to eat chocolate easter eggs on camera 
  • range of ethnicities
  • Send photo, name, age, contact info, brief description of disability -

Thursday, 16 February 2017

News and commentary on the NDIS (63)

Developing and starting your first plan - NDIS webinar
2.00pm-3.00pm Tuesday 28 February 2017 (AEDT)
NDIA hosted webinar about your NDIS First Plan and how to put it into action.
It’s free to watch, and the live and online panel will be answering questions submitted by viewers on the day. 
If you have questions about the first plan process or want to hear about how you might best implement your plan, this is the webinar for you!
Probono Australia, 25th January 2017
The wellbeing of carers caring for an individual participating in the National Disability Insurance Scheme (NDIS) may not have improved compared to those not on the scheme, according to researchers who are embarking on stage three of a national investigation ...

NDIS Housing - 4 key questions
Luke Bosher and Libby Ellis, Disability Services Consulting, 5 February 2017
Literally tens of thousands of people with disability (and families) are thinking about how the NDIS will enable a move out of the family home and into a house of their own.

... Ultimately, participants and their families will need to decide for themselves where they live, who they live with and how they are supported ...

The Inclusion Hub is a new online tool to support Australian families, Early Childhood Intervention (ECI) practitioners and communities with the resources they need to navigate the National Disability Insurance Scheme (NDIS). 
The site has been developed by Early Childhood Intervention Australia (ECIA). Our ECI experts have selected all the best available resources to support families and children with disability and/or developmental delay. It is our goal to make it easy for families, early intervention providers, early childhood educators, medical professionals and the community to have available to them resources, ideas and stories all in one place. 
The Inclusion Hub encompasses a resource directory, a glossary of common terms, webinars, articles, newsletters, downloads and more.
Concerns NDIS Quality and Safety Framework Forgets Majority of People With DisabilityEllie Cooper, Pro Bono Australia, 7 February 2017
Disability advocates welcomed the release of the long-awaited NDIS quality and safety framework, but expressed concern about the significant number of people outside the scheme who won’t be protected ...

Every Australian Counts, 13 February 2017
Until now each state and territory has been responsible for ensuring the quality of NDIS services and protecting NDIS participants in their jurisdiction. But that’s set to change under the new national NDIS Quality and Safeguarding Framework ...

The Policy Problem: The NDIS and Implications for Access to Education
Pro Bono Australia, 7 February 2017
Despite the policy priority across OECD countries of increasing lifelong learning opportunities, fragmented NDIS policy in Australia prevents people with disability from achieving this ideal, write academics Ben Whitburn, Julianne Moss and Jo O’Mara from Deakin University ...

Hunter workers join Sydney disability services rally
Ian Kirkwood, Newcastle Herald, 14 February 2017
About 700 public sector disability workers braved pouring rain and NSW government threats of legal action to rally outside Parliament House against the privatisation of government disability services.

Additional responses to the Omnibus Bill proposal:

Architect of NDIS lashes Federal Government over funding for the scheme (audio 2m 48s)
Peta Donald, ABC AM, 16 February 2017
The man sometimes called 'the father' of the National Disability Insurance Scheme has criticised the Federal Government over the debate this week on how the scheme's to be paid for. The government wants the Senate crossbench to support cuts to family payments, in order to fund the NDIS.

Bruce Bonyhady, the inaugural chairman of the National Disability Insurance Agency, says linking the two is deeply unfair, and cruel to disabled Australians.

Political debate over future funding for the National Disability Insurance Scheme raises concerns (audio only) (audio 4m 45s)
Emily Bourke, ABC PM, 15 February 2017
Well, disability advocates say they're increasingly alarmed by the tone and substance of the political debate over the future funding for the National Disability Insurance Scheme (NDIS) ...

National Disability Insurance Scheme: Where will the cash come from?
Jane Norman, ABC News, 15 February 2017
A ferocious argument has erupted between the Federal Government and Opposition over the funding for the $22 billion National Disability Insurance Scheme (NDIS) ...
Hearing Morrison use disabled people as political pawns gave me the creeps
Michael Buckley, The Guardian, 14 February 2017
Tying the omnibus savings bill to NDIS funding was cynical. I wasn’t surprised – we disabled are used to being treated with contempt by this government.

Leaving aside the ethical question of harming one group of poor – the bill would push unemployed people under 25 from Newstart to Youth Allowance, as one example – to help another, there is something quite unsettling about the way Morrison is framing a refusal to vote for the omnibus as some kind of attack on the NDIS. It’s unsettling to see a bipartisan enterprise like the NDIS (remember that sense of hope when it was introduced) used as a wedge in this way ...

Agree to welfare cuts or forget funding for childcare and the NDIS? The government's ultimatum that failed
Georgina Dent, Women's Agenda, 14 February 2017
Yesterday the federal government ramped up the pressure on senators who might block its $4 billion omnibus of savings - comprising significant welfare cuts - by indicating that would put funding for childcare increases and the National Disability Insurance Scheme at risk ...

Here's a tip: don't pick on disabled people
Laura Tingle, Australian Financial Review, 13 February 2017
Christian Porter is often touted as a conservative contender for future prime minister. He's smart. He's personable. He's got the experience of being a state attorney-general and treasurer under his belt despite his relative youth.

What he hasn't got is any political touch. He rather showed that last year when he missed a huge opportunity to parade himself as an innovative policy maker with some interesting ideas - and create a new platform for debating welfare spending - when he instead sold the government's adoption of the New Zealand investment approach to social welfare as yet just another exercise in ways to save eleventy billion dollars in a hundred years time.

So here's a tip Christian: don't pick on disabled people ...
  • Access to this article might require payment.


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 MePeople 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.

Wednesday, 15 February 2017

Q and A on the NDIS next week (ABC TV)

People with Disability Australia has posted on their Facebook page today:

'ABC TV's program Q and A will be in Sydney next week, talking about the NDIS. Would you like to go along and ask a question?

On the panel will be:
Attorney General George Brandis
Deputy Opposition Leader Tanya Plibersek
Human rights advocate Julian Burnside
News Corp columnist and Editor Piers Akerman
CEO Roy Morgan Research Michele Levine
Register here to join the live studio audience.
In Q.13 (how did you hear about us) please write People with Disability Australia as a reference.

If your registration is successful someone from the Q and A team will be in touch.'

Open letter to Minister Williams, from people with intellectual disability

On his first day as Minister of Disability Services, NSW Council for Intellectual Disability Members have written Minister Williams a letter. You can read or listen to their letter on the NSW CID blog:
Dear Minister Williams, 
Today is the first day of Parliament for 2017 and you will commence in your new role as Minister of Disability Services. This is a very important position as you are now responsible for defending and upholding the human rights of all people with intellectual disability in NSW. 
The NSW Council for Intellectual Disabilities (NSW CID) asks that you make a commitment to listen to people with an intellectual disability. Really listen and take the time to do this. 
Today you will also be met with protestors outside Parliament, angry about the way the NSW Government is undertaking the transfer of disability services to the non government sector and concerned about the quality of care that people with disability will receive in the future ...

Tuesday, 14 February 2017

Responses to 'omnibus Bill'

Disabled People’s Organisations Australia response, posted 13 February 2017

Childcare linked to NDIS funding? An explainer

Every Australian Counts, 14 February 2017
The Turnbull Government yesterday announced they’d dedicate another $3billion to the NDIS but it’s not quite as simple as that. Here’s what has been happening in Canberra over the last 24 hours.

To cut a very long story short, two years ago the then Abbott Government committed over $4billion to childcare, making an average family with kids in childcare around $30 a week better off.

... We’ll keep an eye on it as it develops but if there is a positive to come from all this politicking, it has been to hear multiple senior members of government reaffirm their commitment to fully funding the NDIS.

Brakes put on Government's Omnibus Bill
Nick Xenophon,  media release, 14 February 2017
After exhaustive consideration, the Nick Xenophon Team will not support the Government’s Social Services Legislation Amendment (Omnibus Savings and Child Care Reform) Bill 2017 ...

Childcare changes: Nick Xenophon Team blocks Federal Government's omnibus bill
Matthew Doran and Julie Doyle, ABC News, 14 February 2017
The Nick Xenophon Team has announced it will not support the Federal Government's package of changes to child care and welfare benefits ... Without the support of the three Nick Xenophon Team senators from South Australia, the bill now needs the support of the Greens to pass the Upper House — something that appears unlikely ...

Representation of people with disability

Vogue’s “Diversity Cover” – The View from the First FloorCatia Malaquias, Starting with Julius, February 2017
The Vogue cover disappointingly reflects the narrow prism through which ‘high-fashion’, and much of the fashion and advertising worlds, continue to see and reflect ‘human diversity’, which seems increasingly at odds with what many consumers would like to see reflected even on the glossy pages of fashion magazines ...

#ShePersisted: She Has a Disability and She Persisted, TooMeriah Nichols,, 9 February 2017
These are images of powerful, resilient, strong, fierce fighters of women’s rights, education, sexual and racial equality. But where are the disabled fighters in that image?

Do the disabled fighters exist?

On the ‘right’ way to be disabled
Paniz Khosroshahy, McGill Daily, 6 February 2017
... Currently the only examples we have in our media is either the promotion of elite sports for Paralympics, or representations where a disabled person is either a villain, or lonely, never a romantic interest, or they’re evil, or they want to end their life because that’s how bad having a disability is. They would rather not exist than have a disability. This type of media representation leads people to assume that [disabled people] can’t do anything so when you can make it into university or go grocery shopping they’re surprised that you can do normal everyday tasks ...

Monday, 13 February 2017

Don’t fund the NDIS with cuts to social services and childcare

13 February 2017

Disabled People’s Organisations Australia (DPO Australia), is alarmed and concerned that the Federal Government is linking budget cuts in the Omnibus Bill, now before the Senate, with funding for the National Disability Insurance Scheme (NDIS).

“We are shocked and troubled about this announcement from Treasurer Scott Morrison that once again links cuts to social security with funding for the NDIS,” said Ms Therese Sands, Director, DPO Australia.

“We have stated clearly, including in our pre-budget submission, that we reject any ties to funding the NDIS by cutting social security. We strongly reject measures that would seek to fill any perceived or potential shortfall in NDIS funding through a shift in revenue from other human services. ”

Employment matters

Jessica May, Enabled Employment, 31 January 2017
... ”There’s no disability, just a bad attitude’ – a quote from Scott Hamilton.

So what’s wrong with that statement? What it does is tell people with a disability who are out of work that it’s their own fault they’re unemployed, and that their attitude towards work is the reason they are unemployed ...  it is not the attitude of people with a disability that is responsible for the appalling unemployment rates of that cohort – it is the attitude of prospective employers, and people without a disability who are responsible for providing employment opportunities for them.

Partly to blame is our definition of diversity. We include women, people who identify as LGBTI, Indigenous Australian or culturally diverse people for equal opportunity in our employment policies and statistics. But there is very rarely a mention of people with a disability in diversity policies or practice ... There’s no real diversity, no hope of reflecting the structure of our society, without the inclusion – the real and genuine inclusion – of people with a disability in the workforce.

Erin Perugini, Bloomberg Labor and Employment Blog, 27 January 2017
Why Focus on Millennials with Disabilities? By 2020, 46 percent of U.S. workers will be millennials. Additionally, one-fifth of the U.S. population has a disability. This is a large segment of the workforce, and yet millennials with disabilities face many obstacles in the workplace ...

Calls for quotas to boost employment of people with a disability (audio file and transcript)
Karen Michelmore, AM (ABC Radio), 19 January 2017
Australia's rates of employing people with a disability are among the lowest in the developed world. They've been stagnant for 20 years, and in some areas, are getting worse. Advocates and experts are now calling for radical change. Some want quotas introduced, to encourage businesses to hire more people with disability, or risk a fine ...

Margaret Burin, ABC Mobile, 12 December 2016
... "The more people have contact with disabled people, the more they learn that it's not dangerous, it's not contagious, they've got something beautiful to give and you've got something wonderful to learn about yourself" ...

Disabled employees still offered $2.79 an hour despite it being ruled discriminatory
Joanna Crothers, ABC News, 9 December 2016
Many people with disabilities are still working for less than $3 an hour almost four years after Australia's High Court ruled they were being underpaid at Government-supported workshops ...

AltaGas Ltd. Turns Pilot Project into a Full-Time Position
Ready Willing and Able, 25 October 2016
When Michelle Dulmadge, Director of Operational Human Resources and Administrative Services at AltaGas Ltd. in Calgary, Alberta, was approached about inclusive hiring with Ready, Willing and Able (RWA), she wanted to ensure that the role they would provide would be both a meaningful experience and important to the company.

“It’s not about creating a job – it’s about assigning meaningful work that already exists,” says Dulmadge. Dulmadge was connected to RWA through partner organization, Inclusion Alberta, where she met Stephen. “Stephen was enthusiastic, prepared and excited to contribute to our team,” shares Dulmadge ...

Friday, 10 February 2017

Weekend reading: 11 - 12 February 2017

... This summer my family took the week-long hike for 120 kilometres along the ‘Camino Ingles’ (the ‘English Way’) with up to 14 kg of weight on our backs. This is quite a hike for most people, as I can say from experience, but for none among us was it harder at times then for my younger sister Vivian, a thirteen year old girl with Down’s syndrome. Far from being a hindrance, however, my sister proved to be somewhat of an inspiration ... 
Corey Novis, DSA Journal (UK) 131

Spring/Summer 2015, p 34

2016, you were a tough teacher, but you made me fight. you made me better. you pushed me to live a big brave life. 2017, i hope you’re ready for me.
Still Learning
31 December 2016

Eighty three years young, Armidale’s Ruth Blanch shows no signs of stopping her crucial community work any time soon. Member for Northern Tablelands Adam Marshall recently presented Ruth with the Premier’s Volunteer Award, celebrating 25 years of volunteering experience for a myriad of community groups across the region. 
Ruth’s son Greg is a capable sportsperson with Down syndrome. When the Special Olympics arrived in the region, she knew she had to get involved. 
"He’s quite elite at sport, good at swimming,” Mrs Blanch said. “It was on a personal level that I started – but to see the joy and sense of success that it brings to people with a disability – it just makes it so worthwhile ..."
The Armidale Express
2 February 2017
People with Down syndrome frequently talk to themselves.  We have long believed that for our patients this was a method of learning, a coping strategy, a method of amusement when bored, developmentally appropriate and/or other functions.  Uses and benefits are being recognized in those without Down syndrome as well.  This article below shared by Dr. Dominiak reports some interesting findings:
It turns out – people who talk to themselves aren’t crazy, they’re geniusesGrayson Berman, Sharably, 6 September 2016
Studies show that talking to yourself can make you learn more quickly, think more efficiently, and boost long term memory ... Many experts and studies have actually done research in order to see how talking to yourself helps. Here’s the top five ways, all backed up by science ...
  • For or more information on self talk in people with Down syndrome, look under Mental Health on the Adult Down Syndrome Center's web page.
Self talk
Adult Down Syndrome Clinic

... I don't have to have a team stand around and discuss whether or not, after breakfast I NEED a pear. They may think that I only WANT a pear and that they are there to meet NEEDS not WANTS and therefore I can't have my pear until 10 o'clock because that's 'his routine' ...
Dave Hingsburger, Of Battered Aspect
6 February 2017

... we recognise that the experience of people with intellectual disability in NSW is not unique. 
We are keen to see a national effort to close the gap in the disparity in health outcomes between people with intellectual disability and the general population. The National Disability Strategy — and strong governance arrangements for the implementation of the strategy in states and territories — provides a useful mechanism. 
It is simply unacceptable that people with intellectual disability in our community are dying from preventable causes at over twice the rate as other Australians. We must close this gap.
  • Professor John McMillan is the acting NSW Ombudsman. Steve Kinmond is the Deputy Ombudsman.
Professor John McMillan and Steve Kinmond
ABC News, 9 February 2017

Early bird registration extended

DS NSW Education Conference 2017
23 and 24 March 2017
Early bird registration
extended until 
28 February 2017

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.
  • Early bird registration closes 28 February 2017

Thursday, 9 February 2017

Research news and commentary #2 for 2017

Model assessment may predict obstructive sleep apnea in children with Down syndrome
Massachusetts General Hospital, 26 January 2017
Simplified screening as part of primary care visit could reduce need for complicated, uncomfortable sleep studies. 
A combination of parental questionnaires and inexpensive diagnostic procedures that can be performed as part of a primary care visit may be able to rule out the presence of obstructive sleep apnea in people with Down syndrome. If validated in a future study currently in progress, this assessment – developed by a team led by a MassGeneral Hospital for Children (MGHfC) physician – may be able to greatly reduce the need for sleep studies, which can be expensive and inconvenient for patients and their families ...
Interview with Dr Brian Skotko about the study:

In-Office Exam May Rule Out Sleep Apnea in Kids with Down Syndrome
Salynn Boyle, MedPage Today, 27 January 2017
... Skotko said that he knows the importance of diagnosing and treating Down syndrome-related OSA from both professional and personal experience.
His sister Kristin, who has Down syndrome, was successfully treated for OSA with a tonsillectomy as a child, but the sleep disorder recurred when she got older. She is now 36, and her OSA is again being successfully treated ...
Research report:

A predictive model for obstructive sleep apnea and Downsyndrome
Brian Skotko et al, American Journal of Medical Genetics,  2017; 9999: 1–8
Obstructive sleep apnea (OSA) occurs frequently in people with Down syndrome (DS) with reported prevalences ranging between 55% and 97%, compared to 1–4% in the neurotypical pediatric population. Sleep studies are often uncomfortable, costly, and poorly tolerated by individuals with DS. The objective of this study was to construct a tool to identify individuals with DS unlikely to have moderate or severe sleep OSA and in whom sleep studies might offer little benefit ...

Julian Trollor, Preeyaporn Srasuebkul, Han Xu, Sophie Howlett, BMJ Open, 7 February 2017 

Clinic claims it has used stem cells to treat Down’s syndrome
Andy Coghlan, New Scientist, 1 February 2017
A clinic claims it has used stem cells to treat Down’s syndrome in up to 14 people. “As far as we know, it’s the first time that stem cells have been used to treat Down’s syndrome,” says Jyoti Titus, manager at Nutech Mediworld clinic in New Delhi, India.

The announcement has set alarm bells ringing. It’s not clear to independent stem cell or Down’s experts how stem cells – which can form many types of tissue – might treat Down’s ...

Preventable deaths of people with intellectual disability in Australia: research, media, petition to government

People with intellectual disabilities twice as likely to suffer preventable death, study finds
Elise Worthington, ABC News, 8 February 2017
... Research released in the medical journal BMJ Open on Wednesday reveals a disturbing pattern of unnecessary deaths in the Australian health system. 
Researchers at UNSW found people with an intellectual disability are twice as likely to suffer a potentially avoidable death compared to the general population. 
"We found that one in three deaths in people with an intellectual disability was from a potentially avoidable cause," psychiatrist and lead author Julian Trollor told 7.30 ...

Kate Aubusson, Sydney Morning Herald, 8 February 2017
Professor Julian Trollor first noticed something was amiss when he was trawling through death certificate data for people with intellectual disabilities. Over and over again the underlying cause of death was listed as the disability itself, regardless of whether the patient had died of an infection, cancer or a heart attack.

"I thought, this just doesn't seem right," Professor Trollor said. A person with down syndrome who died of respiratory failure caused by pneumonia would likely have their underlying cause of death coded as down syndrome in population records. 
"Down syndrome itself doesn't cause the death. Anyone else in that scenario would have their underlying cause of death coded as pneumonia ...
Professor John McMillan and Steve Kinmond, ABC News, 9 February 2017
... we recognise that the experience of people with intellectual disability in NSW is not unique.

We are keen to see a national effort to close the gap in the disparity in health outcomes between people with intellectual disability and the general population. The National Disability Strategy — and strong governance arrangements for the implementation of the strategy in states and territories — provides a useful mechanism.
It is simply unacceptable that people with intellectual disability in our community are dying from preventable causes at over twice the rate as other Australians. We must close this gap.
  • Professor John McMillan is the acting NSW Ombudsman. Steve Kinmond is the Deputy Ombudsman.

Research report - the full text of the report is available online, without charge:
... Adults with ID experience premature mortality and over-representation of potentially avoidable deaths. A national system of reporting of deaths in adults with ID is required. Inclusion in health policy and services development and in health promotion programmes is urgently required to address premature deaths and health inequalities for adults with ID.
BMJ Open, 7 February 2017 

... NSW Council for Intellectual Disability is calling for proper investment in the health of people with intellectual disability so that we can end the terrible number of Australians with intellectual disability dying from preventable illness. 
We need the NSW State Government to commit $50 million per year for 10 years to put an end to the high numbers of preventable deaths for people with intellectual disability in NSW ...

Wednesday, 8 February 2017

Livin' the Dream: California, July 2017

The 2016 Convention issue of
Down Syndrome News gives
an overview of last year's event.

It might be a long shot for most of us, but the (US) National Down Syndrome Congress (NDSC) annual convention, which moves around US locations each summer, is a highly regarded event that attracts an international audience. 

So if you are planning to be in North America around the middle of the year, it could be a worthwhile consideration for your itinerary. Or it might be a starting point for a travel plan. Proceedings are made available for purchase after the event. Plans for the 2017 convention are well advanced:

Livin’ The Dream 
45th (US) National Down Syndrome Congress Annual Convention
20 - 23 July 2017 - Sacramento, California
Each year, thousands of people from across the globe attend the NDSC Annual Convention. For most, it’s to hear the latest information from world-renowned experts. For others, it’s a great vacation. However, for nearly all, there’s the one-of-a-kind NDSC “giant family reunion” feeling that permeates the convention weekend.

  • PARENTS learn from the best, as internationally known experts come to Sacramento to share their knowledge across the life span of individuals with DS.
  • SELF ADVOCATES join together with over 300 friends from across the world to learn, share, become empowered and have an amazing time!
  • SIBLINGS share and learn alongside peers, from each other, as well as from professionals.
  • VOLUNTEERS have the experience of a lifetime by volunteering in an number of capacities available.


I Don’t Want To Read Books That Treat Disability As A Tragedy
Anne Susiak, Huffington Post, 2 February 2017
My twin brother, Jack, has cerebral palsy, hydrocephalus and epilepsy, and although I hardly ever came across disabled characters in fiction I never came across witches and wizards in real life, either ...

The Label, Caroline White, illustrated by Sandra Isaksson, Ivy Press, 2016
Being a new parent is nerve-jangling enough as it is, but what happens if your baby is not what you were expecting? How do you deal with the conflicting feelings, a heart assailed by overwhelming love and overwhelming fear, guilt and anxiety as your expectations are rerouted? This happened to Caroline White. So she pulled together her contrary emotions - the good, the bad and the ugly - and spun them into a poignant and uplifting fable, an inspiration for all new parents who find themselves stumbling along an unfamiliar and unanticipated path. Written with great honesty and love, The Label is anchored by a simple yet powerful central image, a metaphor for all that is limiting and prescriptive, and explores what happens when you let the label go and watch as your child blossoms into their best life untroubled by negative expectations ... publisher's note.
  • Caroline White's blog post at Force of Nature - the book was released on 29 December 2016.

We posted about this new book here when it was published a few months ago, and  and here with a link to a radio interview. This link is to a recent newspaper interview with Michael and Jamie Bérubé:
Father tells the next chapter in son’s storyFrank Ready, Centre Daily News, 27 January 2017
... “Life as Jamie Knows It” addresses growing up in all of its complexities, from the natural evolution of family dynamics to the limited work scape that’s awaiting people with intellectual disabilities. 
It’s great pitch material — but not particularly commercial ... 
“This was a harder sell because when you’re dealing with intellectual disabilities, people would rather hear about kids than adults,” Michael said ...

Read more here:

Tuesday, 7 February 2017

People with Down syndrome

Sporting hero Harry is thrilled by the prospect of celebrating his 70th birthday
Chris Taylor, Daily Record (UK), 16 January 2017
A Special Olympics hero has defied the odds by reaching his 70th birthday. Harry McLachlan is marking the milestone with a party set to rival the celebrations after his games triumph. The former athlete admits he would rather have a slice of cake than take to the field, but pals revealed his competitive nature means he is now a force in the snooker hall ...

For Closter Artist With Down Syndrome, Art Is About Ability
Lorraine Ash, Garfield Daily Voice, 27 January 2017
Sometimes Closter artist Andrew Weatherly works at Target, plays tennis and coaches basketball. Other times, he’s a painter, photographer and poet ...

American Horror Story star talks disability awareness
Matt Yuyitung, The Charlatan, 17 January 2017
Jamie Brewer, an actress best known for her roles on American Horror Story, came to Carleton on Nov. 25 to deliver a talk about her path through the entertainment industry.

Brewer, an actress with Down syndrome, talked about working with her disability and her advocacy work for others with developmental and intellectual disabilities ...

Special Olympic skier heads to World Winter Games
Lynette Hintze, Daily Inter Lake, 28 January 2017
On a recent afternoon at Whitefish Mountain Resort, Cedar Vance was still full of energy after a grueling practice session on the slopes.

The petite 26-year-old flitted among the other skiers warming themselves by the outdoor fire ring at the Base Lodge. Vance was in her element, endearing the crowd with her infectious enthusiasm ...

In My Own Words
In My Own Words is a blog dedicated to sharing the stories, reflections, and experiences of people with Down syndrome, as expressed in interviews ... In My Own Words is a place for everyone to come and listen, and it's a place for each and every person with Down syndrome to be interviewed and be heard ...

Down Syndrome Australia submission on adding NIPS to the Medicare Benefit Scheme

From Down Syndrome Australia, 4 February 2017

Over the last few years the capacity to test for genetic conditions such as Down syndrome before birth has increased. It is now possible to detect various chromosomal conditions prenatally through a blood test also known as a non-invasive prenatal screening (NIPS). The Medical Services Advisory Committee (MSAC) received two applications in July 2016 to add NIPS to the Medicare Benefit Scheme.

For your information,  the applications that have been made to MSAC are here and here 

Down Syndrome Australia
has provided a comprehensive submission which outlines our concerns about these applications.
Down Syndrome Australia believes that prenatal screening must be accompanied by appropriate information to support families in making informed decisions about screening and how to respond to the results. Providing a screening test without ensuring informed consent, adequate support and up-to-date information regarding the results is unethical.

It is important to note that Down Syndrome Australia recognises the right of all women to choose to continue or to terminate a pregnancy. Marking such decisions can be extremely difficult and our concern is regarding the accuracy of the information being provided to inform that choice ...
If you want to provide your own feedback to MSAC regarding the listing of NIPS on the PBS you can write to:

Monday, 6 February 2017

Carly Findlay on inspiration and objectification.

Melbourne writer and activist, Carly Findlay has invited readers to share her recent post, written in response to a request for a resource for teachers and parents, from a parent. We are happy to oblige - it is thoughtful, substantial, well researched and illustrated, founded in Carly's personal experience, as well as others'. One of the references is to the Indiana campaign included in our weekend post.

The Down syndrome community is replete with references to inspiration and with objectification - we need to consider this phenomenon/behaviour seriously, take on board what people with disabilities have to say, and alert our schools and communities to it.
Sue asked me if I knew of any resources for parents and teachers that teaches young people about the impact of inspiration and objectification on people with disability. She and a friend wanted to see something written from the perspective of a disabled person, that was "informy, rather than blamey". She wanted it to be in palatable language for a broad audience ...  
... When I've previously mentioned inspiration as objectification of people with disability, using the term Stella Young coined, some people have felt uncomfortable. They don't like the term, so deny it exists or don't want to look into the issue further. This happened a lot during the #crippingthemighty discussions While I never want to censor myself, sometimes I realise the need to soften language to make serious issues more palatable, to reach an audience that needs to hear it. There is definitely a need for this post ...
Carly Findlay, 5 February 2017 

Friday, 3 February 2017

Weekend reading and viewing: 4 - 5 February 2017

Studies suggest as special needs parents we’re more likely to struggle with mental health issues, yet this is something that is really hard to talk about. Nobody wants to be the one dealing with depression, anxiety, or trauma, but we do. This is a conversation we need to have. Sometimes we need help. Sometimes we need to know that we are not alone, and other people struggle too ...
Ellen Stumbo
29 January 2017

In New Delhi, India a baby received multiple injections of human embryonic stem cells as an experimental treatment for Down syndrome. Any ethical issues here?

They are legion ...
Mark Leach, Down Syndrome Prenatal Testing
25 January 2017

... Learning to Drive is not, on the face of it, about learning to drive. At first it appears to be, as Michael (Connor Long) has shown an obvious desire to drive since he was a toddler, as the opening ‘home cinema’ shots show us. But he seems to be thwarted by people assuming that, as a twenty-year old man with Down Syndrome, he is incompetent to do so ...
Alison Wilde, Disability Arts Online

I was recently invited to speak to a room of commissioners for services for people with learning disabilities in England. This is a pretty rare event for me these days and so I was keen to make the most of the opportunity.I called my talk ‘Who Put Out the Fire?’ and I wanted to talk about why there no longer seems to be any significant passion or momentum for inclusion or for further deinstitutionalisation. I do not mean that nobody is doing good work. As ever, there are brilliant people doing wonderful things across our communities. But overall the passion that used to exist to bring about positive change has evaporated. In fact, in some places, we see things going into reverse. 
We are at a moment of change ...
Simon Duffy
19 January 2017

The Indiana Governor's Council for People with Disabilities marks Disability Awareness Month throughout March.

... The 2017 Disability Awareness month campaign theme is "I'm Not Your Inspiration." Often, people with disabilities who are successful, athletic, employed or simply good neighbors are put in the spotlight as inspiration to others. This year's campaign theme emphasizes that people with disabilities are people first - people who want to be fully included in their communities, just like everyone else ...
This is one of a series of posters, and other artwork supporting the theme. The campaign is local, but the message is universal.