People with Down syndrome ... doing what matters to them

Harry Fairchild is the world’s first person with Down’s syndrome to officially qualify as a table tennis coach

Down's Syndrome Association (UK), 8 June 2016
Harry Fairchild recently passed his Table Tennis England Level 1 Coaching Qualification to become the world’s first qualified table tennis coach with Down’s syndrome ...

Photographer preparing for international competition

Dunedin Television (NZ), 7 June 2016

A Dunedin man with an an eye for a great picture is off to London for an international photography competition. 25 year old Carlos Biggemann lives with Down's Syndrome, something that hasn't stopped him pursuing everything he wants in life ...

• Dame Judi Dench to judge International Photography Competition, DSA (UK), 2 June 2016

Strong voice supporting people’s abilities: My Job - Declan Murphy
John Daly, The Irish Examiner
... Going to Trinity and experiencing independent college life was both challenging and engaging for Declan, just the same as thousands of other students: “I loved going to university. Sometimes the work was hard, but I did like the subjects. College life was the best part, it was a great experience to live in Dublin. At the weekends, I got the bus home to Waterford and the train back up to Dublin on Sunday nights. I think it changed me as a person. I got to do my own thing. I had a lot of responsibility to be independent. I was able to prove to people that I could look after myself.” ...

As a person with a disability, Camp Ekon changed my life

Peter Flagler, Toronto Star, 30 May 2016
I knew from my first week at Camp Ekon that it would be my summer home for years to come.

Camp Ekon is the best thing that has ever happened to me, because as a person born with Down syndrome, camp has given me a chance to experience the outdoors, be involved in a camp environment and be a member of an amazing staff ...

Down syndrome couple's love story captures hearts with more than 12 million views on social media

Ashleigh Stevenson, ABC News, 28 May 2016

A young Queensland couple with Down syndrome say they are overwhelmed about the reaction to their love story, which has resonated with people around the world. The ABC's story about Michael Cox and Taylor Anderton's journey to attend a debutante ball for people with disabilities on the Gold Coast has had more than 12 million views on social media ...

Meet the 14-year-old athlete with Down syndrome inspiring others to take up sport
Sarah Keaveny-Vos, CBC News Prince Edward Island, 2 June 2016
'I feel like I've become an athlete. I just want to say I'm really so happy'. Jacob MacNeill, a Grade 8 student at Birchwood Intermediate, has a need for speed. ...

Support Team Australia through new Facebook page

Down Syndrome Swimming Australia has set up a new Facebook page specifically for Team Australia's participation in the 2016 World Championships in Florence, Italy next month. The swimming championships will be part of the Trisome Games 2016.

The team training camp and presentation of uniforms for Italy has been held in Brisbane this weekend - lots of photos and news have been posted already.

Like the page to keep up with preparation and travel, and to cheer the team on in Italy. Send messages of support, and congratulations throughout the games, 15 - 22 July 2016

Congratulations and good luck to all the team members and supporters!

Down Syndrome Swimming Australia team presented with World Championships uniforms

Kathy McLeish, ABC News, 12 June 2016

After years of preparation and training, the Down Syndrome Swimming Australia team has been presented with their uniform ahead of the World Championships in July. The 22 swimmers, from around Australia, gathered in Brisbane to enjoy some time in the spotlight before they fly to Florence in four weeks ...

"We hold more than 50 per cent of all the available world records in Down syndrome swimming, we've been the champion team for the last four World Championships, we'll probably do that again this year," he said. "This is a seriously good, seriously competitive bunch of people ...

Previous posts on the Trisome Games 2016:

• NSW swimmers in Team Australia: Trisome Games 2016
• Funding campaign for Trisome Games 2016
• Congratulations Team Australia, Florence 2016 !
• Trisomy Games 2016: Florence

Weekend reading: 11 - 12 June 2016

Maken Understand Love
Mardra Sikora (guest blogger), Ellen Stumbo, 6 June 2016
... didn’t want to tell him of these articles, of mothers who feel that their children, who look a little like him, are “better off” dead. That there are people who claim that those with Down syndrome are not worthy of life. I do not want to tell him these things.

But then he surprised me, as he has before and doubtless will again, when he intuitively knew more about the situation than I shared. He looked across the table and said, in his way, “Maken Understand.” ...

Parenting my kid who has Down syndrome isn't all rainbows and unicorns

Maureen Wallace, She Knows, 8 June 2016

When a mom writes a letter to the doctor who kept telling her to abort her baby with Down syndrome, telling him how wrong he was, chances are good it will go viral.

“Oh my God!” we think indignantly. “The nerve! That baby is beautiful! All life is precious!”

Then we share the post along with pink twirling hearts and gaping-mouthed smileys to show our support for this beautiful almost-aborted baby. Maybe toss in a unicorn or a rainbow.

But what are we really accomplishing? ...

First and Last Impressions
Kelle Hampton, Enjoying the Small Things, 8 June 2016
... “She is wise enough to know that she’s at a different level than her friends, but smart enough to know that she can fit in,” her teacher writes. “She has a wonderful stubborn streak that reminds you that she knows herself well and won’t settle for less. She is most comfortable being treated as equal and being given the same responsibilities as her friends.” Oh, to have your children seen for who they truly are ...

Strike a Pose
Link Disability Magazine, June 2016 (Vol 25, #2)
In April Madeline (Stuart, 19, was invited to model at Caspian Fashion Week in Astrakham, Russia, an experience she describes as “awesome”, also appearing on television in Moscow and conducting numerous media interviews ... Though the response to Madeline has been largely positive, Roseanne says convincing the fashion and beauty industries to employ a model with disability can still be a tough sell. “The response has been both positive and negative,” she says. “The positive has been wonderful and inclusive with a lot of people contacting us for Maddy to work for them but there is still a huge stigma and it is a lot of hard work to convince most people that they are helping themselves by including Madeline. Not only are they being inclusive but they have huge publicity opportunities which is great for everyone, as with more publicity things become just an everyday occurrence” ...

For Nicholas Love
Letitia Keighley, Embracing Wade, 18 May 2016
... There is something. It’s there fluttering away quietly in the deep recesses of my heart. It’s the feeling of breath leaving my lungs with joy. I have tried so hard to explain it over the years and I can’t. It’s a purity, a soundness, a deep rooted sense of connection I have with Wade. He sees me and gets me ...

White bread performance won't cut the mustard

Claire Stewart, Australian Financial Review, 10 June 2016

Jamie Brewer, the star of US television hit American Horror Story, flew to Australia in late May to spend a weekend making a short film, just south of Sydney. Filming finished ahead of schedule – usually unheard of – and so far, the director says, the rushes look fantastic.

Brewer has Down Syndrome and 11 of the crew have intellectual disabilities. They're also students at director Genevieve Clay-Smith's Bus Stop Films production company.

"That weekend dispelled a few stigmas about inclusion, both on a film set and in the workforce generally, that it's too hard to employ a person with a disability, that it will compromise on quality, and that it will slow things down." ...

Resources

Changing the Game for Players With Down’s Syndrome

Cara Jessop, Huffington Post (blog), 25 May 2016
‘We love good stories. We need good stories’. I am in a kitchen with two young mothers, swiping through pictures of my brother Tommy on my phone. I’m there to demo a new iPad game my studio Enabling Play has developed, and we are chatting while waiting for the kids to finish their Saturday morning activities ...

Beyond Words app
NSW Council on Intellectual Disability e-News, May 2016
Beyond Words publish a series of books for people with intellectual disability using pictures to explore a range of topics.  Beyond Words has now developed an app where all of their books are available!

The Beyond Words Story App has over 400 short picture stories and 1800+ pictures covering a diverse range of subjects including medical treatment, getting arrested, bereavement, making friends and falling in love.

Click here to find out more.

Sally and Possum
ABC Kids and ABC iView
An innovative and beautiful video series for young children who use Australian Sign Language (Auslan) as their primary means of communication; designed to enhance their foundational literacy & numeracy skills.

News and commentary on the NDIS (49)

 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 - news

NDIS Newsletter, May 216

Every Australian Counts is proposing that people with disabilities and their families call on individual local candidates to pledge support for the full implementation of the National Disability Insurance Scheme, here.

NSW Council on Intellectual Disability - updated commentary on NSW services transfer

How the NDIS is Disrupting the Culture of Largesse in NFPs

Natasha Hudson, Probono Australia News, 7 June 2016
Not for Profits with head offices not based in the National Disability Insurance Scheme trial sites will tell you they’re ready for a 1 July start up, but disability consultant Natasha Hudson is not convinced ...

NDIS prep program's life extended in NSW

9 News (via AAP), 24 May 2016
A National Disability Insurance Scheme program has been extended in NSW with an additional $3 million promised to help people prepare for the scheme. Disability Services Minister John Ajaka says the funding will enable My Choice Matters - a program that helps people with disability and their families prepare for the NDIS - to continue until June 2018.

The program uses workshops and other resources to help people with a disability throughout many areas of their life. NSW Council for Intellectual Disability chair Michael Sullivan said the program was valued by many people ...

Forced cohabitation is not "companionship" or "inclusion"

Ellen Read, Advocacy for Inclusion, 19 April 2016
It seems bizarre to have to spell this out, but it is apparently necessary: forcing a person with disability to live with another person with disability is not “inclusion” or a form of “companionship”.

Advocacy for Inclusion is currently working on two cases where NDIS participants who are going through the planning process are being pressured by the NDIA planner to cohabit with another person with disability. Both participants are currently living alone and are very happy living alone. However, the NDIA planner is insisting that the person with disability should live with another person with disability as this is more “inclusive” ...

Order your 2016 | 2017 Entertainment™ Membership now

Down Syndrome NSW is selling Entertainment™ Memberships and with your support, the funds we raise will be used towards our programs and services.

If you haven’t already purchased your Membership this year, this is your chance to support us and be rewarded with over $20,000 of valuable offers.

Top 5 reasons to love Entertainment™

• You will be supporting our fundraising. We receive 20% of the purchase price for every Entertainment™ Membership sold.
• You can enjoy hundreds of up to 50% OFF and 2-for-1 offers from some of the best fine dining restaurants, popular cafés and family restaurants in your area.
• You’ll be ‘entertained’ all year long with valuable cinema, activities and theme park offers.
• Treat yourself to discounted eGift Cards from national retailers like David Jones, Woolworths, rebel and much more.
• Discover new places with more than 2,000 hotels and resorts, with exclusive accommodation offers.

There are four editions available for NSW which are:

• Sydney Greater West
• Sydney and Surrounds
• Newcastle, Central Coast and the Hunter Valley
• NSW South Coast

More information and link to purchase Entertainment™ Membership

2016 Federal election - information page

With still another three and a half weeks to go until the Federal election on 2 July 2016, we have posted a page at the list under the blog banner at the top of this page.

It will give links to information in Easy English about how the election works, and links to policy information from political parties and disability organisations.

The links to policies are posted for information only, not to endorse any particular political position, party or candidate.

The page is called FEDERAL ELECTION 2016 - INFORMATION

The page currently has information from two previous posts on the election, and the information below. It will be added to as the campaign progresses:

Here are 2 links to easy read resources on the Australian Electoral Commission’s website. They are great resources to help to prepare to vote in the upcoming federal election on 2 July.

• Easy English Guides - How to Enrol to Vote; How to Vote at a Polling Place; How to Vote by Mail

• Practise voting - Senate

Every Australian Counts is proposing that people with disabilities and their families call on individual local candidates to pledge support for the full implementation of the National Disability Insurance Scheme, here.

Carers Australia Election document 2016

3 June 2016
Carers Australia has produced an election document for the 2016 Federal Federal Election, detailing the commitments we are seeking from any future Australian Government ...

Let's use this election to improve the lives of family and friend carers

Carers Australia (media release), 6 June 2016
In releasing its pre-election document, Carer supports: addressing collateral damage, Carers Australia is focusing its “asks” on a set of proposals that will improve the effectiveness and address gaps in current support services for carers.

“Of particular focus are carers with high needs,” Carers Australia CEO, Ara Cresswell said today ...

Jobs Plan For People With Disability Fact Sheet - Australian Labor Party policy document.

Latest additions to 'other events' page

• Click here for Down Syndrome NSW events

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 

• All current events listings 

Hosted by the Down Syndrome Association of Turkey, in Istanbul - Congress website

Exclusion and Embrace: Disability, Justice andSpirituality Conference 

Uniting Church - multi-faith Australasian Conference reflects a growing interest in issues of faith and meaning in the lived experience of disability. The Conference has the support of a wide number of organisations including the Jewish Christian Muslim Association (JCMA) and the Faith Communities Council of Victoria (FCCV). The Uniting Church Synod of Victoria and Tasmania is providing the Conference Secretariat. Among the themes explored will be ethics, care, inclusion in faith communities, friendship, discrimination, love, justice, liberation.

21, 22 and 23 August 2016 - Melbourne

2015 Survey of Disability, Ageing and Carers: results

This publication contains the first results from the 2015 Survey of Disability, Ageing and Carers. This will be followed by a Summary of Findings in late 2016.

Disability, Ageing and Carers, Australia: First Results, 2015
29 April 2016
This publication is the first release of data from the 2015 Survey of Disability, Ageing and Carers (SDAC). It presents key information about disability prevalence in Australia as well as data about older Australians (those aged 65 years and over). Data is also included about people with disability who reported that they had experienced discrimination. Future releases will provide greater detail about these groups and important information about carers ...
Experience of discrimination for people with disability
The 2015 SDAC introduced a new disability discrimination module designed to estimate the prevalence of discrimination for those with disability and identify the nature of this discrimination. Included in this initial release of SDAC data is information about Australians with disability who were living in households, aged 15 years and over, and their experience with discrimination because of their disability.

In the last 12 months:

• Almost one in 12 Australians with disability (281,100 people or 8.6%) reported they had experienced discrimination or unfair treatment because of their disability. 
• Rates of reported discrimination were similar for men (8.3%) and women (8.9%). 
• Young people with disability (aged 15-24 years) were more likely to report the experience of discrimination (20.5%) than those aged 65 years and over (2.1%). 
• The source of discrimination was an employer for almost half of those aged 15 to 64 years with disability who were unemployed (46.9%) or employed full-time (46.2%) and just over one third (34.6%) of those employed part-time, at the time of the survey. 
• Over one third (35.1%) of women and over one quarter (28.1%) of men aged 15 years and over had avoided situations because of their disability. 
• Older people (aged 65 and over) were less likely to avoid situations because of their disability (20.1%) than younger people.

Cleaning up guide - Easy English

Thanks to NSW CID for posting the link to this Easy English guide to cleaning up after a storm, prepared by the Australian Red Cross - it might be useful for some families around much of NSW after this weekend's weather, especially on the coast:

Cleaning up after an emergency
Red Cross Emergency REDiPlan Dealing with wind and water damage

'I'm your fan'

Some years ago, Special Olympics produced one of the best short promotional videos ever, just before a World Games. And now they have done it again:

I'm Your Fan
Central Films for Special Olympics, on Vimeo,  May 2016

• The earlier video is here (it was re-issued for the 2014 European Summer Games, but was originally released several years previously).

Weekend reading: 4 - 5 June 2016

The whisper campaign
Kaari Wagner-Peck, A Typical Son, 27 May 2016
... I turned to Thorin: “She has four people with Down syndrome in her family!”

He looked up at me and rolled his eyes ...

Almanac Life: Eternal sunshine of the spotless mind

Tess Pryor, The Footy Almanac, 28 May 2016

... Between the Vic Market and Collins Street I found out my new mate was called Enzo, he got a bus and then a tram to work, and then a tram and a bus back home and had a dog “instead of a cat”.

As we got up to disembark at Collins St I asked him if he had an umbrella as it was still raining.

No, but I’ve got a beanie in my bag. It’s a Bombers one, I will put that on.

I wanted to give him a hug goodbye but we were involuntarily separated by a surge of fast-moving hostile umbrellas.

Immersing myself in a drab John Brack Collins St, I realised the weather hadn’t improved but my outlook certainly had thanks to the joy that was Enzo ...

'Give us a chance': American Horror Story star Jamie Brewer on tackling Hollywood with a disability

Jenny Noyes, Daily Life, 1 June 2016
If you're a fan of the American Horror Story anthology, you'll be more than familiar with Jamie Brewer. The 31-year-old actress has played three separate roles over the course of the Emmy-winning series' life. In the first season, she was Addie, the daughter of Jessica Lange's Constance Langdon. In the third season, she played Nan, a clairvoyant witch. And most recently, she voiced Marjorie, a ventriloquist's (played by Neil Patrick Harris) demonic doll.

As an actor with Down Syndrome, she's a shining example for what can be achieved when filmmakers commit to authentic casting and recognise the value of actors who may not fit the typical able-bodied mould ...

The One Thing I Would Change About Down Syndrome

Meriah Nichols, A Little Moxie,  1 June 2016

Down syndrome isn't a big deal with us, overall. It's a part of Moxie that we appreciate and love - except for one thing. One.
... The only thing that I truly hate about Down syndrome is the bolting – the zero impulse control ...

‘Me Before You’ has a disabled main character — but activists are angry. Here’s why

Stephanie Merry, Washington Post, 4 June 2016

Hollywood has a history of snubbing minority groups, but there’s been some incremental progress recently. Just look at “Master of None,” “Creed,” “Transparent,” “Straight Outta Compton” and “Fresh Off the Boat.”

Disabled characters, however, remain an anomaly, and when they do show up, they’re usually either tragic victims or sources of inspiration.

That may be changing. Activists are outraged at the new movie “Me Before You” for its disabled lead character who feels his life is no longer worth living ...

2016 NSW Creative Achievement Awards

The New South Wales Creative Achievement Awards are a NSW Government initiative to recognise outstanding achievements that raise the global profile of NSW creative industries.

Winners will be announced at an industry event on 6 June 2016, during Vivid Sydney 2016.

Genevieve Clay-Smith, founder of Bus Stop Films,  is a finalist for the NSW Emerging Creative Talent Award:

Genevieve is a millennial with a portfolio career that spans the film industry, not for profit space and advertising. She is co-founder of Taste Creative, a creative agency based in Sydney and she is the co-founder and Executive Director of not for profit Bus Stop Films. She's an award-winning writer/director, was the 2015 NSW Young Australian of the year and winner of the 2014 100 Women of Influence, Young Leader award. She recently took out B and T's 2015 Women in Media award for creative and she has been named by MTV as one to watch.

Many people with Down syndrome work with Bus Stop Films, in all areas of film making.

Down syndrome: Quality Living for Individuals and Families - A Lifespan Approach

IASSIDD (International Association for the Scientific Study of Intellectual and Developmental Disabilities) is the first and only world-wide group dedicated to the scientific study of intellectual disability.

Following the IASSIDD congress in Melbourne, we have been able to secure from Canada the expertise of Dr Roy Brown, a clinical and educational psychologist and Professor Emeritus at the University of Calgary, and his colleague Dr Nancy Jokinen Assoc Professor at the School of Social work, University of Northern British Columbia. Both are established authors, presenters and have over 20 years of experience in quality living issues in people with Down syndrome.

Down syndrome – Quality Living for Individuals and Families 
- A Lifespan Approach

Presenters: Dr Roy Brown and Dr Nancy Jokinen

9:00am – 4:00pm Tuesday 23rd August, 2016

SMC Conference and Function Centre, 66 Goulburn St, SYDNEY

Cost: $155 members, $175 non members

Register now 

Topics include ...

• Individual quality living Principles, Concepts & Application 
• Family Quality Living – Issues for families 
• Summary of recent research – recommendations for practice 
• Opportunities for small group discussion surrounding 
• Early childhood 
• School aged issues 
• Young adulthood – further education, employment 
• Ageing and Dementia 

Further information and online registration

2016 NSW Carers Awards

Nominations for the 2016 NSW Carers Awards are now open:

The NSW Carers Awards recognise the contribution unpaid carers make in our community and the important role they play for the people they care for. By nominating a carer you know, you are helping raise awareness of the challenges faced by carers while also celebrating their role. Applications will close at midnight on 10 July 2016

This year there will be 10 Awards in total, two for each category outlined below. One of the ten recipients will become the 2016 NSW Carer of the Year.

The graphics at the foot of the Care for a Carer awards page are the links to online nominations:

Research for the Royal Commission into Institutional Responses to Child Sexual Abuse

NSW Council on Intellectual Disability e-news, May 2016
People with Disability Australia (PWD) will be running a focus group in Sydney to consult with people with disability about how safety can be improved for children with disability within organisational settings. This information will be put into a report and sent to the Royal Commission into Institutional Responses to Child Sexual Abuse.

The focus group will be held on Thursday 23rd June.

Contact Meredith Lea for more information or if you would like to participate:
ph: 02 9370 3100  email: meredithl@pwd.org.au

Research news and commentary #6 for 2016

Lines of Inquiry, June 2016
Newsletter, Centre for Applied Disability Research

Research on experiences with mental health and challenging behaviour services
NSW Council on Intellectual Disability e-news, May 2016
Macquarie University is seeking parents and guardians of adults with intellectual disability to complete a survey about experiences accessing mental health/challenging behaviour services.

To complete the survey click here.

If you would like further information, please contact Joyce Man by email: joyce.man@students.mq.edu.au

Anxiety among children with mild intellectual disability
NSW Council on Intellectual Disability e-news, May 2016
The University of Technology Sydney (UTS) is looking for feedback on a new program that has been created to treat anxiety in children with mild intellectual disability. UTS would like to hear from parents and professionals who work with children with intellectual disability.

Contact Anastasia Hronis for more information by email anastasia.Hronis@uts.edu.au

Same gene links blood sugar problems in Down syndrome and Type 2 diabetes

Eureka Alert, 19 May 2016
Overexpression of RCAN1 gene reduces insulin secretion in both disorders.

Problems with insulin secretion experienced by people with Type 2 diabetes, parallel similar problems with insulin-secreting beta cells in many individuals with Down syndrome. A new study, published on May 19 in PLOS Genetics by Professor Damien Keating of Flinders University and colleagues, has used this knowledge to identify a single gene that may cause these problems ...

Freely available article in PLOS Genetics
Citation: Peiris H, Duffield MD, Fadista J, Jessup CF, Kashmir V, Genders AJ, et al. (2016) A Syntenic Cross Species Aneuploidy Genetic Screen Links RCAN1 Expression to β-Cell Mitochondrial Dysfunction in Type 2 Diabetes. PLoS Genet 12(5): e1006033. doi:10.1371/journal.pgen.1006033

Reasons for accepting or declining Down syndrome screening in Dutch prospective mothers within the context of national policy and healthcare system characteristics: a qualitative study
Neeltje M. T. H. Crombag et al, BMC Pregnancy and Childbirth, 26 May 2016 (online) DOI: 10.1186/s12884-016-0910-3

Abstract: Uptake rates for Down syndrome screening in the Netherlands are low compared to other European countries. To investigate the low uptake, we explored women’s reasons for participation and possible influences of national healthcare system characteristics. Dutch prenatal care is characterised by an approach aimed at a low degree of medicalisation, with pregnant women initially considered to be at low risk. Prenatal screening for Down syndrome is offered to all women, with a ‘right not to know’ for women who do not want to be informed on this screening. At the time this study was performed, the test was not reimbursed for women aged 35 and younger.

• The full text of the paper is provided free online by Bio Med Centre (Open access Publisher)

Chromosome 21?: UCI researchers studying link between Down syndrome and Alzheimer's

Courtney Perkes, The Orange County Register, 24 May 2016

... (University of California) Irvine has received $4.7 million from the National Institute on Aging to launch a five-year study this summer aimed at identifying who with Down syndrome is most at risk for developing dementia.

“I think the urgency in part reflects the urgency of Alzheimer’s research,” said Dr. Ira Lott, a pediatric neurologist and lead researcher. “Alzheimer’s is a tremendous national problem. Many people with Down syndrome live productive and happy lives. To have that cut off prematurely by Alzheimer’s disease is a tragedy that we’re trying to prevent.”

The findings could result in better treatment options and yield discoveries that would also benefit the general population ...

Disability sector news

Australian Electoral Commission resources The Australian Electoral Commission (AEC) has developed easy read guides for the upcoming election including how to enroll to vote, how to vote on election day and how to postal vote. They can be downloaded by clicking here. The Federal election will be on Saturday 2 July. Work and Care initiative gaining momentum Carers Australia, Carers National News, May 2016 Carers Australia has produced a range of valuable resources as part of our Work and Care initiative, which aims to improve the capacity of carers to combine employment with their caring responsibilities, and to assist long-term carers on income support to transition into employment when their caring role ceases or is reduced ... read more

Disability Justice Project
NSW Council on Intellectual Disability e-news, May 2016
The Disability Justice Project aims to build disability services sector capacity to better support people with cognitive disabilities who are in contact or at risk of contact with the justice system.

The Project provides free training for services. Click here to find out more about free training available.

Taxi subsidy for disabled increased from July after 16-year wait
Kirsty Needham, Sydney Morning Herald, 29 May 2016
"I don't like to sit around," says Mark Tonga, who became a tetraplegic eight years ago in a rugby training accident. He cheers on the Wallabies, recites poetry, and attends Sydney Opera House performances and the art gallery on top of his prodigious volunteer work in the rugby community ...

NSW Council on Intellectual Disability - updated commentary on NSW services transfer

Transfer of NSW government disability services to the non-government sector

NSW Council on Intellectual Disability, 30 May 2016
NSW CID and other major organisations released a position statement in May spelling out what we see as needed if the NSW Government’s process for tendering out its services is going to work satisfactorily for people with disability and their families ...

Also in May, ADHC released its call for expressions of interest from service providers wishing to tender for ADHC services.

NSW CID welcomes that this information is now available and that the tender aims to continue at least to 2018 a range of very important services for people with complex needs, for example the Statewide Behaviour Intervention Service. We are pressing the NDIA the urgency of it having a clear plan for meeting complex needs including maintaining the role of services like SBIS.

We are very concerned about some of the NSW government's plans including the large size of the groupings of services that will be tendered out ... read on here.

New resources from UK to support people grieving

New resource in 'Breaking Bad News' portfolio
New guidelines have been released on the UK Breaking Bad News website, on talking about death to people with intellectual disability:

On this downloadable sheet you can fill in someone’s current ‘framework of knowledge’, describing a singular chunk of knowledge in each empty box. You can also describe the chunks of knowledge that need to be added.

Earlier posts on resources from this project are here (2012) and here (2013)

Managing Grief Better: People With Intellectual Disabilities

Prof Sheila Hollins, Intellectual Disability and Health, February 2016

It is imperative that all people, including those with learning disabilities, are able to access the supports given in their culture to understand death and loss.

• This article is a substantially re-written version of one that appeared in The Habilitative Mental Healthcare Newsletter, May/June 1995, Vol. 14 No. 3.

The reviews are in ...

Speed of Life: review
Dee Jefferson, Timeout Sydney, 27 May 2016
... The imagery in the show ranges from the epic (constellations, oceans, the imagery of war) to the comic and quotidian. Video segments introduce us to several other characters, from the Epic Arts ensemble in Cambodia, and show moments from Ruckus's residence there.

The patchwork structure of short, disparate scenes in Speed of Life allows each performer's perspective to be expressed idiosyncratically: Gerard performs a comic and yet unsettling and occasionally slapstick routine of "rushing"; he and James talk about jobs they've had – cleaning toilets at Maccas, sweeping and moping at Harris Farms. Again, it's comic with an undertow of frustration ...

Pete's work up with the greats
Hornsby and Upper north Shore Advocate, 26 May 2016
Local Studio A artist Peter Dudding in breaking down boundaries in the art world - becoming the first artist with an intellectual disability to be exhibited at Wolloomooloo's Firstdraft Gallery.

Artistic Director Gabrielle Mordy said 250 artists applied for the exhibition and Peter was one of only 20 to be accepted.

Pig Dog is Peters' first solo exhibition," Ms Mordy said. "Pig Dog was curated by Sydney painter Paul Williams. Paul has been painting with Pete at Studio A since 2015, they have a real synchronicity in their abstract expressionist style."They also share a very mischievous sense of humour spending much time laughing at their own jokes."

At the exhibition Dudding sold half of his paintings.
"Peter seems to have thoroughly loved the experience of exhibiting and selling his work," Ms Mordy said. "His family and friends attended the opening, and Peter also bravely participated in Firstdraft's artist talk program.

Dudding said he 'felt like a superstar' during the exhibition of his work.

"I enjoyed the talks because I also got to make a drawing in front of everyone," he said. "I am looking forward to bigger works, collaborating with Paul Williams."

He has now returned to the studio space at Studio A to continue his career as an artist and is preparing for his next exhibition.

On education and schooling

There is no shortage of discussion about how students with disabilities should be educated. Half way through the school year is  good time to assess how things are going, and how they might change:

Less is more: the education assistant - practical tips for teachers no.3

Catia Malaquias and Dr Robert Jackson, Starting with Julius, 27 May 2016
... An education assistant can be an invaluable resource in the classroom to support the teacher to include a student with disability. They can assist the class teacher to provide a great educational experience to all students as well as increase the independence and social connection of the student with disability ...

Inclusion At All Costs?

Linda Graham, 16 May 2016... In his TES (Times Education Supplement) article, Tom (Bennett) criticises something he calls “Inclusion At All Costs” (IAAC). This is not something with which I am familiar, perhaps because it is not a real policy and no one has ever advocated for it. ... I can understand where Tom is coming from and have no doubt his frustration resonates with a great many teachers. But, there are a number of problems with his article, as well as the Secret Teacher piece, that I feel duty bound to point out. These problems revolve around the uncritical use of words like “mainstream”, the way that inclusion is being conceptualised, and the conflation of equity and equality ...
Friends fight school for boy with Down syndrome 

USA Today, 16 May 2016
Brady was going to be moved to a school with a program for students with special needs, even though he was thriving in a class with his friends. His friends petitioned the school system to let him stay in their class. (47 s video)

Four Essential Variables of Inclusive Schools

Jennifer Kurth, Swift Schools, 2015

Despite the positive effects of inclusion, students with extensive and complex support needs are all too often relegated to self-contained, segregated classrooms with little to no access to the general curriculum ... Why does segregation persist, then, in light of the compelling benefits of inclusive education? The answer to this question is elusive, but seems to reflect a general sentiment that a continuum of placements is necessary and appropriate, and that, in fact, some degree of restrictiveness is appropriate for students with disabilities ...

Weekend reading, viewing and listening: 28 - 29 March 2016

Nothing has changed about Down syndrome, except how the world treats those with it

Mark Leach, Down Syndrome Prenatal Testing, 19 May 2016

This past Saturday, our family got to experience something that would have been unimaginable when I was born. It shows nothing has changed about Down syndrome, except the way the world treats those with Down syndrome ...

Down's Syndrome: It's Just Two Words
The Untold, BBC Radio, 16 May 2016 (MP3 file 28 minutes)
Salma is having a baby, but as the due date draws near she's forced to confront unresolved issues with her last pregnancy: her baby was born with Down's syndrome and she's yet to tell her in-laws ... The shock of the diagnosis and the way Salma was given the news contributed to a long period of struggle and shame ...

Prenatal Diagnosis of Down Syndrome: What I wish I could tell my patients
An Unexpected Journey, 18 May 2016
Please allow me to introduce myself. I am a family doctor (GP) working in the UK. I am also mother to three children aged 8, 6 and 5. My children are full of energy, love and mischief. My youngest daughter also has Down syndrome.

You have just been told that your unborn child has Down syndrome. Somebody used those words, that I once studied in my text books about your unborn child ... The are many good, factual resources, explaining the medical implications of being born with Down syndrome. My concern is these only tell part of the picture ...

Jamie Brewer on Studio 10
Studio 10, 23 May 2016 (6 m)
We were so happy to welcome Jamie Brewer on the show today, who made history when she became the first woman with Down syndrome to walk in New York Fashion Week.

Hey “Special Needs Parents”! Where’s The Outrage Over “Me Before You”?
Meriah Nichols, Two Thirds of the Planet, 25 May 2016

... There have been a lot of posts in the disability community (see end of this post for some links) over this particular new gem of a flick, but I haven’t seen one from a parent of a child with a disability, a “special needs parent” as many like to call themselves. And I kind of wonder… why?

Worker, not carer
Susan Wallis, Clickablog, 25 May 2016
You’re a worker, not a carer.I’ve just had a discussion in a closed Facebook group about the term carer versus worker. A disability support worker had described themselves as a ‘carer’ and I couldn’t help but correct them ...

Arts news and information

Lots of activity in the arts:

Actress Jamie Brewer advocates for increased diversity and inclusion in film and television
Monique Shafter, 7.30 (ABC TV), 26 May 2016 (6 m, video and transcript)
Fans of TV series American Horror Story would know actress Jamie Brewer who played 'Addie', a character with Down syndrome. Having Down syndrome herself, she is an advocate for increased diversity and inclusion in film and TV ...

Accessible Arts, the peak body for arts and disability in New South Wales has launched a new website. Visit it regularly for news, information, events and opportunities.

• Accessible Arts Newsletter May 2016

Front Up - call for professional and emerging artists with disability
Front Up is now looking to recruit artists with disability to take part in this innovative community Arts and Cultural program. We are looking for artists who want to take their careers to the next level in becoming future arts and cultural leaders including involvement in programs based in Western and Metropolitan Sydney ...

• Applications close 13th June 2016

Bus Stop Films moves to Australian Film, Televsion and Radio School

Bus Stop Films, 29 April 2016
A significant development for Bus Stop Films.

Some thoughts and practicalities on dual diagnosis - Down syndrome-autism

It is estimated that 7 - 10% of people with Down syndrome also have autism:

How to survive a dual diagnosis

Jerry Davich, Chicago Parent, 18 April 2016
Hearing the words "dual diagnosis" can be frightening for parents of a child with special needs, especially if they are already struggling to deal with an initial diagnosis.

"It was like we were reliving our life five years ago when we received my son's prenatal diagnosis," says Missy Gallagher, whose son, Finn, has Down syndrome ...

The Down Syndrome - Autism Connection recently drew attention to Bonnie Zampiro's 2015 article (about the reality of living with autism for some people and their families) as applying equally  to those with a dual diagnosis of Down syndrome and autism. Her follow-up article expands on practical strategies to promote inclusion:

My Son Has the Kind of Autism No One Talks About

Bonnie Zampiro, Huffington Post (blog) 28 September 2015
... The media shows us all of the feel-good stories, like the child with autism who gets to be the manager of the high school basketball team, or the boy with autism who goes to the prom with the beautiful girl, or the girl with autism who is voted onto the homecoming court. We light it up blue every April and pat ourselves on the back for being so aware.

But we aren’t aware ...

My Son Has the Kind of Autism No One Talks About — Part 2

Bonnie Zampiro, Huffington Post (blog), 2 October 2016

... those who commented showed me that I was wrong. You are aware. You are aware of autism. You just don’t understand it ... 

What if I told you that both of us — you, with your typically functioning child and me, with my child with autism — could both do things together that would benefit the wellbeing of our children and that would enable all of our children to grow up to be their very best?

We can... if we want to. Many of you asked me for solutions. I have several ...

Health news and information

(Massachusetts General Hospital) MGH to build Down syndrome portal

Lindsay Kalter Boston Herald,  21May 2016

Massachusetts General Hospital will soon launch the first ever “virtual clinic” for people with Down syndrome in an effort to reach patients who do not have access to local clinics and relieve overwhelmed primary care physicians.

“It’s really going to transform the way we’re able to deliver health care to people with Down syndrome and other disability populations,” said Dr. Brian Skotko, co-director of the MGH Down Syndrome Program. “The modern day primary care physician maybe only has one or two patients with Down syndrome, and it’s unreasonable to expect them to stay up to date on research for the conditions of all of their patients.” ...

Child with Down Syndrome suffers from the pain of arthritis

Elaine Keogh, Irish Independent, 9 May 2016

The mother of an 11-year-old boy who has Down Syndrome, arthritis and is non-verbal has told how he was "in pain for years and we did not know" ...

• See this recent post for a research article on children with Down syndrome and arthritis

Keeping Children and Adolescents with Down Syndrome Healthy: Medical Updates for Health Care Professionals (video 1.02.20)

Dr. Brian Skotko and Melissa Reilly, Sargent College 8th Annual Meredith E. Drench Lecture, 3 May 2016
The Meredith E. Drench Lecture, Sargent College’s first endowed lecture series, was established by physical therapy alumna Dr. Meredith E. Drench to share her passion and belief in the “compassionate rehabilitation” of the whole person. The 2016 lecture, “Keeping Children and Adolescents with Down Syndrome Healthy: Medical Updates for Health Care Professionals” was delivered by Dr. Brian G. Skotko and Melissa J. Reilly ...

The Link Between Sleep Apnea and Gout

Kevin Deane, Medscape, 25 February 2016

Adult Down Syndrome Clinic referenced this article with this comment on Facebook on 4 March 2016:

Here is an interesting correlation - gout and sleep apnea. Both gout and sleep apnea are more common in people with Down syndrome. This information indicates a potential causative link between sleep apnea and gout. 

Gout is caused by an elevated uric acid level which is a by-product of the break-down of purines. Uric acid can deposit in joints causing inflammation and gouty arthritis. It can deposit in other locations as well such as the kidneys causing kidney damage or kidney stones. 

If you have gout or sleep apnea, consider testing for the other

Solid tumors rarely occur in people with Down syndrome

Nature (Genetics in Medicine, 1 April 2016
Genetics in Medicine's podcast discusses the distribution of cancers by types and ages in people with Down syndrome in Denmark.

People with Down syndrome in the media

Old-fashioned Gold Coast coming-of-age ceremony still a hit for Queenslanders with disabilities

Tom Forbes, ABC News, 21 May 2016
... "I'm proud of myself, that's how I feel." (Taylor Anderton's) debutante partner was her fiance Michael Cox, 24, who travelled from Brisbane to attend many of the rehearsals ...

• Includes video from Australia Wide.

California Woman with Down Syndrome Fulfills Dream of Becoming a Zumba Instructor

Tiare Dunlap, People, 16 May 2016
... Now, as the first Zumba instructor with Down syndrome in the United States, Arescurenaga regularly teaches around California. Last week, she and her mom traveled to Anchorage, Alaska, where she led two days of dance classes ...

Young man with Down syndrome becomes youngest business owner in his town
ABC 7 (US), 2 May 2016

Blake Pyron, 20, is the youngest business owner in the town of Sanger, Texas, and the only one with Down syndrome ... When Blake Pyron was born, his mother said that she, like many mothers of children with Down syndrome, was told there'd be many things he wouldn't be able to do. On May 7, Blake, now 20 years old, will open his own snow cone shack.

Legislative intern is State's first with Down syndrome

Heather Waliga, ABC 11, 4 May 2016
Paul Kocher walked confidently into his new role Wednesday morning at the North Carolina General Assembly wearing a brand new blazer and carrying a briefcase ... As he neared the end of his first day on the job, it became evident Kocher's new position was a perfect fit ...

Challenges to representation of disability in arts and media ... on radio and social media

More disability, arts and media news, firstly from Nathan Basha - be quick, the audio file is available only for 7 days. The interview runs for a substantial 12 minutes:

I had the pleasure of joining my colleague and mentor Genevieve Clay-Smith from Bus Stop Films on Mornings with Wendy Harmer on ABC 702 (radio) yesterday (23 May). 

We were talking about the work Bus Stop Films undertakes around inclusive film making and how we can and need to get more job opportunities for people with disability in the Film Industry.  

Listen to the interview here - we are on at about the 1 hour 41 minute mark.

You can move the audio file slider directly to the 1 h 41m mark to hear the interview.


Not only do we want to see more representation of people with disability on film it needs to be done well. This recent Twitter Q &A about the yet-to-be-released feature film 'From Me to You' exemplifies how not to do it, and how people with disability can use social media to challenge the inherent ableism in the film:

Sam Claflin Ends Twitter Chat on #MeBeforeYou - After Disability Activists Fight Against the Film's Ableist Message
Dominick Evans, Storify, 23 May 2016

May 23, the official @MeBeforeYou film Twitter account announced that actor @samclaflin would be hosting a twitter chat, and disabled activists from around the world showed up to challenging the harmful messages and assertions this film makes. 

These messages include:

- Disabled people cannot have healthy, intimate relationships
- Disabled people's deaths benefit non-disabled people
- Disabled people are better dead than disabled ...

Added 25 May 2016:

Spare me, “Me Before You”: Hollywood’s new tearjerker is built on tired and damaging disability stereotypes

Emily Ladau, Salon, 24 May 2016
The love story of a suicidal quadriplegic and his young aide is the latest to objectify disabled people ...

"Ableist, Stereotypical, and Offensive" or: Why I Hate "Me Before You" (15m 15s)

Dan Harvey, 24 May 2016
Thirteen years ago today, I sustained a spinal cord injury, and began living my life as a person with quadriplegia. Ten days from today, on June 3rd, "Me Before You" -- a film that features a character with a spinal cord injury -- will be released in theatres across North America. To celebrate my anniversary, I made this to explain why "Me Before You" is offensive, ableist, and perpetuating negative stereotypes about disability.

RUCKUS Ensemble in the news

RUCKUS Ensemble has had some well-deserved press this week, in the lead up to the debut of their latest production, Speed of Life tomorrow evening, including great photos and video. The first link includes reference to the possible impact of recent cuts to arts funding for this troupe of performers who all have Down syndrome :

Disability-led troupe Ruckus turns their eye towards the Speed Of Life in fresh show at new home

Chris Hook, Daily Telegraph, 19 May 2016
Sydney performers with disabilities to open new show this week, 

Ehsan Knopf, 9News, 22 May 2016

Easy read voting kit

ACT - based Advocacy for Inclusion has updated its easy read Voting Kit for the Federal Election called for 2 July 2016.

The information is available to read online, or to download as Word or .pdf documents.

Weekend reading and viewing: 21 - 22 May 2016

I finally understand how inspiration porn hurts kids like mine

Maureen Wallace, She Knows, 18 April 2016

My journey as a parent of a child with a disability has been a series of blessings, mistakes and good intentions. I’d say the same about my experience as a writer focused on parenting a child with a disability. I’ve learned much in these brief six years; above all, I’ve learned there’s much more to learn.

I’ve also learned a little about grace and allowing myself time to learn. Life doesn’t offer a six-week night course in disability 101. Until I had someone in my life with a disability, until the experience became as personal as motherhood can be, I just bopped through life hoping to get it right, hoping not to offend anyone in general ...

Baseball and Brothers - Good Journalism on a Celebrity and a Disabled Sibling

David M Perry, How Did We Get Into This Mess? 16 May 2016
The celebrity with disabled sibling genre of story tend to be pretty awful ... Adam Newman, however, directed me to this story about a young player for the Dodgers and his older brother, Champ, who has Down syndrome ...

When professionals assume that parents of disabled kids see ghostsSocial Skills for Autonomous PeopleIn the special needs service provision community, there is a strongly held narrative about what happens when a kid turns out to be disabled. This narrative causes a lot of problems ...

Raising a Child with Down Syndrome Isn't as Hard as I Feared

Amy Julia Becker, Parenting, 14 November 2015
I'm not working harder to be a good mom for my child with Down syndrome than I am to be a good mom to my other two kids ...

Whose Story Is It?
Dave Hingsburger, Of Battered Aspect, 18 May 2016
... I finally asked the fellow for permission to speak to his staff. She was a little shocked at the idea that he had permission giving power, but smiled benignly, a skill we all learn within weeks of employ. I said to her, "He really needs your help to get this story out. He needs your silence. Every time you interrupt to help, he has to clarify what he was saying as different from what you are saying. It's his story, let him tell it." ...

Influenza vaccination recommendations

Specific recommendation for flu vaccination for people with Down syndrome and their carers, issued by the Australian Department of Health in April 2016:

The Australian Immunisation Handbook 10th Edition

4.7 Influenza (page last updated: 08 April 2016)

Persons at increased risk of complications from influenza infection
Persons aged ≥6 months with conditions predisposing to severe influenza, such as:

... Down syndrome – Persons with Down syndrome should receive annual seasonal influenza vaccine whether or not they have congenital heart disease. This is due to the presence of anatomical abnormalities, which put them at increased risk of upper respiratory tract infections, as well as a high prevalence of other medical conditions that put them at increased risk of severe influenza.

Persons who may transmit influenza to persons at increased risk of complications from influenza infection
The following groups of people can potentially transmit influenza to persons at increased risk of complications from influenza infection; vaccination of these groups is therefore recommended to protect those at risk:

... household contacts (including children ≥6 months of age) of those in high-risk groups, including providers of home care to persons at risk of high influenza morbidity

In addition, vaccination is recommended for 'residents ... of long-term residential facilities, ... due to high rates of influenza transmission and complications during outbreaks in such facilities.

Research news and commentary #5 for 2016

Everybody counts: Maths teaching for children with Down syndrome
Research Developments - Australian Council for Educational Research, 21 March 2016
Students with Down syndrome are increasingly experiencing education alongside their peers in inclusive mainstream classrooms, and the latest Australian research indicates that these students can learn a great deal of mathematics in primary school with good teaching and the right support.

Research by Dr Rhonda Faragher and Professor Doug Clarke from Australian Catholic University and Associate Professor Barbara Clarke from Monash University, facilitated by ACER, investigates the practices of teaching teams working in inclusive mathematics education settings. Their research has found that students with Down syndrome can learn and become more confident with mathematics when educators are able to provide appropriate teaching and support ...

High Risk of Arthritis in Down's Syndrome

Nancy Walsh, MedPage Today, 2 May 2016
Children with Down's syndrome should have an annual musculoskeletal examination because of their increased risk of developing arthritis, an association that is widely under-appreciated, a researcher said here [British Society for Rheumatology Conference, Glasgow, 26-28 April 2016] ...

Books for children addressing inclusion

A useful list of children's books:

11 books that teach inclusion
Meg Kehoe, Romper, April 2016
A child's education starts at home. From what they see and hear in their household, to the lessons their parents teach them, to the books their parents read to them. You begin teaching your child lessons before they even realize they're lessons at all. Important things like acceptance, diversity, feminism, love, friendship, kindness, and inclusion, all have seeds planted at an early age. There are children's books out there for every topic you could ever want to breach with your child, and there are plenty of children's books that teach inclusion ...

ACO 'Move' 2016 - applications now open

The much loved program Move, hosted by the Australian Chamber Orchestra is open for applications for five sessions to be held in June and July 2016, at the ACO Studios, Circular Quay:

As part of the ACO’s commitment to developing new initiatives for people with disability, we are hosting ACO Move, a series of classes integrating movement and live music. 

Participants work with arts facilitator Dean Watson, ACO musicians, a percussionist and support staff through a series of task-related exercises designed to develop movement responses to music. 

Classes are free of cost and held at the ACO Studio - a safe and inclusive environment - and participants must be available to attend all 5 sessions.

• Click here for session details and the link to apply
• Read more about Move here

Radio interview: remarkable parenting

Sue and Neil Coutts from Martins Creek (in the Hunter region) have opened their home to over 55 children in the past 20 years ... that's on top of raising their three biological children. They spoke to Ben Millington on 1233 (Newcastle) Mornings yesterday, to highlight the need for foster parents in NSW. 

Sue and Neil have cared both short and long term for a number of children with complex health care needs and disabilities. Their very strong and successful advocacy for their daughter Sarah to remain at the local primary school into her high school years because of her fragile health, was well supported by the local community and press as you can see from previous posts here and here. Sarah died at 14 in 2010, and Sue and Neil are now foster parents to two young sons with Down syndrome. 

This excellent interview is 14 minutes long, and well worth the time to listen, and contemplate the remarkable parenting of two of the most grown-up people you will ever hear.