Tuesday, 26 July 2016

News from Down Syndrome Education International (2)


Professor Sue Buckley receives Education Award from National Down Syndrome Congress Down Syndrome Education International, 24 July 2016
DSE’s Director of Science and Research, Professor Sue Buckley OBE, has been presented with the National Down Syndrome Congress’ Education Award for her work improving education for children with Down syndrome.

Professor Sue Buckley OBE was presented with the National Down Syndrome Congress’ Education Award “for improving the lives of children with Down syndrome by developing innovative research-based education techniques.”

The award was presented at the Opening Plenary Session of the National Down Syndrome Congress’ 44th Annual Convention in Orlando, Florida, USA.

Presenting the award, NDSC’s President, Marilyn Tolbert, recognized Sue’s distinguished career serving people with Down syndrome and their families worldwide through research and support services, including the earliest research showing children with Down syndrome could learn to read and – more recently – the first randomized controlled trial of an educational intervention designed for children with Down syndrome ... read more here.

News from Down Syndrome Education International (1)

New online training course launched - Effective education for children with Down syndrome in school
Down Syndrome Education International, 22 July 2016


Effective education for children with Down syndrome in school
This new online course covers learning and development for young people with Down syndrome in school. Presented and led by Professor Sue Buckley, the course details what the latest research tells us about the educational needs of students with Down syndrome and offers a wealth of practical advice about evidence-based teaching strategies. 
This online course offers convenient and cost-effective access to up-to-date information and practical guidance for parents, teachers and therapists supporting children with Down syndrome aged from 4 to 16 years ... all details are on the DSE website, here.

Monday, 25 July 2016

Arts news (2): dance workshops; Irish film


DirtyFeet is a Sydney-based, not-for-profit contemporary dance organisation supporting independent dance artists- particularly young emerging artists looking for opportunities to cultivate their creative potential and gain industry experience.

Throughout September, DirtyFeet is presenting 'The Right Foot' - FREE creative dance workshops for people with and without disability between the ages of 14 and 26 years, providing a creative activity for those who may otherwise not have access to dance. The workshops will be facilitated by Brianna Kell and Margot Politis.

The Right Foot workshops for 2016 are open for registration (booking essential):  
September 3, 10, 17, 24Riverside Theatres, Parramatta

Let's hope we can get to see this movie in Australia. Check out the trailers embedded in the news story:

Award-winning Irish film starring cast who have intellectual disabilities hopes to go global
The Journal, 24 July 2016
An Irish film starring nine young actors who have intellectual disabilities is hoping to go global and be shown at international film festivals.

Sanctuary, directed by Len Collins, is an adaptation of the theatre play of the same name by Christian O’Reilly about a group of young people with intellectual disabilities who go on a day trip to Galway. Two of the gang are a couple, and plan some alone time in a local hotel.

... The film was premiered at the Galway Film Fleadh earlier this month, where it won the Best Irish First Feature award ...

Arts news (1): vote for short films; perform or present at conference

From 'About' Focus on Ability Short Film Festival:
For the 8th consecutive year NOVA Employment is running the Focus on Ability Short Film Festival. The festival is aimed at raising awareness of the abilities of people with a disability. 
This year we aim it to be the biggest yet with all films entered to really showcase extremely talented people with disabilities. With over $100,000 worth of cash and prizes to be won this is a highly contested competition.

The theme for the competition asks film makers to 'Focus on the Ability' of people with a disability.
  • Films open for viewing and voting on Wednesday 27 July 2016

2017 'Having a Say' Conference: EOI
Expressions of Interest to do a presentation or performance at the 2017 Having a Say Conference in Geelong are now open. Presentations and performances are to based on the conference theme: "Lead YOUR Life". If you would like an application please call the office on 9416 4003 or email: havingasay@valid.org.au

Saturday, 23 July 2016

Weekend reading and viewing: 23 - 24 July 2016


A follow up interview:
Georgia captures hearts with live TV video bomb
The West Australian, 21 July 2016
Meet the girl who captured the hearts of millions of people across the world when she video bombed a Channel 7 news report ...

What The LGBTQ Community Taught Me About Parenting My Son With Down Syndrome

Anne Pennistin Grunsted, Role Reboot, 15 July 2016
For as much as we strive to eliminate bias against our children, we parents also need to prepare our kids for the reality of a world that will not always be kind ...

In Down syndrome’s shadow, she is perfect in her own way
Beverly Beckham, Boston Globe, 15 July 2016
For a long time, after my granddaughter Lucy, who has Down syndrome, was born, I looked at healthy, typical babies with envy ... Thirteen years later, I wish I could go back in time and tell that frightened me that ... Lucy would be loved, and not out of pity ...

Frustrated, fed up family leaves Canada after son with Down syndrome complicates immigration
Gilbert Ngabo, Metro News (Canada), 15 July 2016
... “They had promised news for me by the end of June but now are saying I will have to wait until fall,” Felipe Montoya told Metro in an email from Coast Rica.

Montoya moved his family to Canada when he accepted a job as an environmental studies professor at York University. But, when they applied for permanent residency in 2013, the Montoyas were told their son could be an undue burden to the country’s health system ...



Heather Libby, Upworthy, 19 July 2016
Twin sisters Judith and Joyce Scott's life story sounds straight out of a movie.

It's a story with everything you'd imagine in an Oscar-winning movie: an idyllic childhood, heart-shattering loss, an emotional reunion followed by triumph, and resounding artistic acclaim. Above all, it's two sisters who loved each other beyond adversity and through everything. And it's 100% true ...


This is how it feels when you say “I don't see your disability”
Carly Findlay, 19 July 2016
... I don’t want you to use euphemisms when referring to disability. Say the word.

I don’t want you to stare, point, ridicule and ask questions before you've said hello, but I don’t mind if you talk about my disability politely after you've gotten to know me.

I want you to see my disability as a part of me.

Because, when you say "I don’t see your disability", you invalidate who I am.


Using PBS in Australian disability services
Brent Hayward, NSW CID blog (guest post) July 2016
PBS stands for positive behaviour support. PBS is a way of supporting people with intellectual disabilities to have a better life and help them to stop using behaviours which hurt other people or themselves. It might sound like PBS is the right way to go, and that’s true! We’ve known about PBS for about 30 years and we know that it works because there is lots of research about it . But what we don’t know very well is how to use PBS in Australian disability services ...

Friday, 22 July 2016

World swimming champions - again!

The Down Syndrome World Swimming Championships were held as part of the Trisome Games 2016 in Italy this week. Down Syndrome Swimming Australia took a team of 22 elite swimmers to Florence, that has won the World Championship again, as well as broken world records and brought home medals of all colours.

Down Syndrome Australia posted on Facebook:
Team Australia has bought home the championship cup again in a stunning fourth day of competition! Loads of finals, medals, more world records and even the coaches relay team won and set a new world record! 
Team Captains Phoebe Mitchell and Stephen Donovan were exceptional on accepting the award and giving their speech in front of a huge crowd. 
Well done to all our swimmers and coaches. We are so proud of you.

You can send your congratulatory message via Down Syndrome Australia Swimming - Italy 2016  on Facebook

Gymnastic champions at Trisome Games

Gymnastics Australia is keeping us up to date with the Australian gymnasts competing at the Trisome Games 2016 in Italy - and they are doing very well! Congratulations to you all!

Nicholas Zrnic won gymnastics gold for Australia
in the Trisome Games! Here he is pictured with his team mates
 Ashley Khule and Christopher Bunton, who also won medals. 
Beth Hull placed third overall in Rhythmic Gymnastics
Chris Bunton - silver in artistic gymnastics

Thanks to Gymnastics Australia for permission to re-post their photos, and keeping us all informed.

Latest additions to 'events' page

    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 



    Solo exhibition of Digby Webster's art works, in the mediums of oil pastels, acrylics, felt pens and inks. Digby enjoys strong, evocative colours and has an expressive visual language of his own. He has Down Syndrome and currently works at the Australian Council of the Arts.
    Friday, 8 July 2016 - Friday, 2 September 2016 -  Chatswood

    Murmuration Integrated Performance Company - series of eight weekly workshops open to the community to explore improvised movement, develop dance skills, activate individual creativity and learn theatre exercises. Interested participants will take part in an end of year sharing. All Teaching Artists are experienced and qualified to deliver high quality dance and theatre workshops, for a variety of ages and for people with and without disability. Enquire about joining after the start date.
    19 July - 6 September 2016 - Marrickville

    My Choice Matters workshop calendar for August 2016

    Relationships Skills workshop
    Relationships and Private Stuff - For those aged 16 years - 29 years. There will be another later in the year for 30 years plus. You can 'like' Relationships and Private Stuff on Facebook for notifications and contact details.
    10.30 am- 4 pm Saturday 27 August 2016 - Burwood (NSW)

    Dateable's Dances
    Relationships and Private Stuff -Dance Room A: 18 years - 29 years and Dance Room B: 30 years plus. Same-Sex attracted people welcome. Dating activities for all, with the help of a professional Matchmaker. You can 'like' Relationships and Private Stuff on Facebook for notifications and contact details.
    Saturday 24 September 2016 - Burwood (NSW)

    Thursday, 21 July 2016

    Update on Trisome Games: artistic gymnasts and swimmers shine

    Congratulations to the gynmnasts and swimmers doing so well at the Trisome Games in Florence this week.  Keep following their progress on  Facebook as they post fabulous photos and updates every day. Special Olympics Australia  posted on Facebook yesterday (20 July 2016):
    Congratulations to the Trisome Games 2016 artistic gymnastics team who competed earlier this week in Florence, Italy. They brought home 2 gold, 3 silver and 5 bronze medals!  
    The athletes competing are: Chris Bunton, Olivia Sadler, Ashley Kuhle, Beth Hull, Emile Koen and Nicholas Zrnic.   
    Down Swimming Australia - Italy 2016 World Championships posted last night, with photos:
    20th July: 6 Gold, 1 Silver, 1 Bronze
    Thursday 21st July is the final day of competition, and includes rhythmic gymnastics.



    Wednesday, 20 July 2016

    Resources for consumers with a disability

    Consumers with a disability
    Australian Competition and Consumer Commission


    When you pay for a product or service yourself, as an NDIS participant, or through your state or territory's disability support system - you have consumer rights. These resources from Australia's consumer protection agencies are designed to help you understand and use your rights ...

    Australia's consumer protection agencies have produced a range of educational materials to help you understand your consumer rights and to help you use these rights if something you pay for isn't right:
    Each resource is available in a range of languages and formats, including audio.




    Tuesday, 19 July 2016

    Young Carer Bursaries, 2017


    The Young Carer Bursary Programme is an initiative of Carers Australia, funded by the Department of Social Services.

    Applications for 2017 bursaries open on 2 August 2016, and close on 14 September 2016:
    The aim of the Young Carer Bursary Programme is to help relieve the financial pressure on young carers to undertake part-time employment, in addition to managing their educational and caring responsibilities. 
    The provision of a bursary increases the opportunity for young carers to remain in, or return to, education or training leading to improved employment opportunities and long-term finances. 
    A bursary is similar to a grant. It is not a loan, and so does not need to be repaid.
    If you are eligible you could receive an Australian Government Bursary of $3,000.

    Monday, 18 July 2016

    Education links

    Tomorrow sees most NSW students return to school for the second half of the 2016 school year. These links about various aspects of school education for students with disabilities, and Down syndrome in particular, have come to our attention recently:

    Hearing, learning and Down’s syndrome
    Stuart Mills, Special Educational Needs (SEN) Magazine, May/June 2016
    Stuart Mills looks at the effects of hearing impairment on children with Down’s syndrome, and what teachers can do to help ...

    Children with disability are being excluded from education
    David Roy, The Conversation, 30 May 2016
    Governments in Australia, New Zealand and the UK are failing children with disabilities by not providing necessary learning support and by allowing issues to permeate without intervening. Schools are deliberately disregarding disability standards through rejecting school places, denying the opportunity of access to activities and offering minimal, if any, support to children with disabilities.

    And research shows that this is becoming more of a concern ...

    Thinking about Literacy and Intellectual Disability
    Aaron Johannes, 101 Friends, 31 December 2013
    One of the most powerful parts of the work we’ve done over the last several years has been a) realizing how illiteracy affects people with disabilities and b) witnessing their inclusion in conversations about their lives in some of our work using graphics and plain language, dialogues and story-telling and, more recently, theater and music. Several times people have gotten quite emotional about feeling, finally, part of conversations and empowered to the point where they can participate ...

    “Inclusion really does make us all better”: Tips and success stories from Beth Foraker
    The Inclusion Lab (Brookes Publishing), 9 February 2016
    We asked Beth a few questions about successful inclusion, and then she shared two wonderful, personal success stories—one of them featuring her own son, Patrick. Read on to learn from one of the most passionate and knowledgeable inclusion advocates in the online community!
     Federal Government?
    Family Advocacy, 14 July 2016
    ... beyond answers on the allocated funding, we need our government to face up to the fact that Australia is failing to make progress toward true inclusion of our children with disability in schools ...

    Trisome Games 2016 - parade, photos, medals

    Facebook is awash with loads of wonderful photos from Down Syndrome Swimming Australia - Italy 2016 World Championship and Trisome Games 2016 of the weekend's preparations, training, the pageantry of the Games parade through the streets of Florence, and the opening ceremony.

    This morning there are some from the first day of competition, where the swimmers have collected 6 gold, 3 silver and 2 bronze medals.

    Results for both swimming and gymnastics are still being posted on the Trisome Games website,

    Please send messages of support, as well as looking at the photos and liking them.


    Friday, 15 July 2016

    Weekend reading and viewing: 16 - 17 July 2016


    'I feel guilty for ever shedding a single tear over her diagnosis'
    Irish Independent, 12 June 2016
    Irish mum Joann O'Callaghan had no idea what to expect when she learnt her little girl had Down Syndrome.

    I remember it like it was just yesterday - the moment I was told that my baby girl Ellie had Down Syndrome. It wasn't just because I felt the news was delivered in the wrong way - it was so abrupt and sudden - but today I feel guilty for ever shedding a single tear over her diagnosis ...


    Family violence survivor and White Ribbon advocate wants more help for special-needs victims
    Nicholas Payne, Moorabbin Glen Eira Leader, 11 July 2016 4:59pm
    Family violence survivor Emma Gierschick has called for more help for women who have special needs children and are fleeing abusers. The White Ribbon advocate escaped an abusive relationship several years ago along with her young daughter, who has Down syndrome ... “The child, depending on what their disability is, they’re not necessarily able to understand the instruction of ‘run’ or ‘hide’ or ‘move’ — they can be a sitting duck,” she said ...

    Stranger: Four Point Five of Five
    Dave Hingsburger, Of Battered Aspect, 5 July 2016
    There are moments of pure clarity. Cradled in her father's arms she was brought over to where she had pointed. She had directed, father willingly followed ... I don't know where she was going, this tiny little girl with Down Syndrome, but I knew, with certainty where she wasn't ...

    Introduction to ‘Finding A Way’, the enthralling and uplifting memoir from Graeme Innes
    Attitude Foundation, 15 July 2016
    ... The family tradition of ‘all hands on deck’ was deeply ingrained in me, and I was desperate to help. But that would be a challenge for a blind 12-year-old, where the environment was wet, muddy and constantly shifting. My face fell further and further as one after another of the set-up crew told me there wasn’t anything I could do. As it had done often in the past, and would do again and again during my life, my dad’s warm hand on my shoulder saved the day.

    ‘There’s more than enough jobs for everyone today,’ he said. ‘The only puzzle is working out which one you can do. And I’ve solved the puzzle. Come and drive the lift.’ ...


    On relationships, sexuality

    The disabled community still waits for our 1960s sexual revolution 
    Allan Hennessy, The Guardian, 26 June 2016
    Born with a debilitating spinal disability, 53-year- old Frenchman Marcel Nuss, met his first wife, Gaby, in hospital as he battled for his life at the age of 22. Now divorced, he lives with his partner, Marie, and his two children in the leafy suburbs of Strasbourg. “I often had comments like ‘Oh, he’s a bit ugly’,” Marie reveals in Disability and Sexuality: Exploring the Intimacy Option, a documentary exploring the interplay between disability and sexual liberation ...

    Let's take the initiative to start a sexual revolution for people with disabilities 
    Servaas Kamerling, The Guardian, 14 July 2016
    We need to push the boundaries and create new role models to push the barriers of acceptance and normality around disability and sex ... Let’s not wait for the revolution, let’s create it and see the barometer rise.

    Report on the Australian Youth with Disability National Forum: Promoting Sexual and Reproductive Health and Rights
    Australian Cross-Disability Alliance, February 2016
    In November 2015, the Australian Cross Disability Alliance (ACDA) ...  hosted a national forum of young people with disability on the theme of sexual and reproductive rights ... as part of an exciting and innovative global project being established by the United Nations, to improve the human rights of young people with disability worldwide – particularly their sexual and reproductive rights and their right to freedom from violence ...

    Why shouldn't individuals with a learning disability be in a relationship?
    Rebecca Wallett, Nursing Times, 5 July 2016
    Learning disability branch editor, Rebecca, was shocked to find that individuals close to her were unaware that a disability does not change a person’s desire and right to be in a relationship ...

    Letter to editor, Australian Women's Weekly, August 2016:
    The Dateables story about people having relationships that are important to us all was wonderful. The maturity shown by the couples in what they considered in what it takes to be a good partner and their understanding and consideration of each others abilities, brought tears to my eyes. Many couples today could take a leaf out of their book. Liz Dore has done a wonderful thing providing this service.  K. Bart, Newcastle

    Thursday, 14 July 2016

    Trisome Games 2016: starts 15 July


    While team selection for the Rio Olympics is in the news, our focus is on these elite athletes with Down syndrome:
    Gymnastics Australia, 7 July 2016
    Australian Down Syndrome Gymnastics Team ready to take on the World at Trisome World Games in Florence, Italy from 15th - 22nd July.

    The team (left on) 13th July with coaches Abigail McPherson and Emile Koen for 1 week of competition. 
    This is the first time all sports have joined together to create a World Championship at the one venue or close by. 
    The 5 gymnasts will compete against all countries around the continent with a Junior section 10 to 17 yrs and Senior 18 and over. 
    Being with other athletes with Down Syndrome will be great as everyone is competing on equal body and intellectual ability which will be a wonderful experience for them.
    Back L Nicholas Zrnic, Chris Bunton, Abi McPherson
    (Rhythmic coach)

    Front L Olivia Sadler (rhythmic), Ashley Kuhle (artistic)
    and Beth Hull (rhythmic ).Male coach Emile Koen (absent).

    Down Syndrome Swimming Australia - Italy 2016
    The Australian Swimming Team has been in Italy for a few days, training and settling in. Lots of photos are on the Facebook page.

    Follow the athletes progress, and send them messages of encouragement through any of the social media options.



    Accommodation vacancy, Blacktown

    Community Connections Australia has asked us to let members know about this accommodation vacancy. Its publication here is not an endorsement by Down Syndrome NSW, but provided for information only. Please respond directly to the contacts given for Community Connections, not to Down Syndrome NSW:
    AVAILABLE NOW
    We have vacancies in a newly built house in Blacktown for 2 people with disabilities to share. 
    The house will provide drop in support and also onsite emergency coverage. 
    Rent: $350.00 per week/ $125.00 PER PERSON plus expenses. (Eg. Community based package or families self funding until their NDIS plan can incorporate costing) 
    Features a brand new cottage at rear of property features open plan kitchen, 2 bedrooms, 
    open plan outdoor alfresco area under cover.
    10a Burrell Street, Blacktown is set high on a hill.
    Community Connections Australia is a not for profit disability organisation and is a Tier 3 Housing Provider.
    To discuss please contact Justine Acar on 1300 36 46 88 or mobile: 0466 686 500

    Wednesday, 13 July 2016

    News and commentary from the broader disability community

    Robert Martin's historic election to UN disabilities committee
    NewsHub (NZ), 15 June 2016
    New Zealander Robert Martin has made history at the UN, as the first person with a learning disability to be elected to the United Nations Committee on the Rights of Persons with Disabilities ...

    Pope Francis needs to do more than kiss the disabled 
    David M. Perry, Crux, 14 June 2016
    It's surely not Pope Francis' intended message, but sometimes he seems, inadvertently, to treat disabled persons as a spectacle with public kisses and blessings. The disabled need more, in terms of both access to the Church and inclusion in it ...

    Me Before You - disability as a tragedy and the laughing able gaze.
    Carly Findlay, 16 June 2016
    This post discusses suicide. If you need to talk to someone, please call Lifeline on 13 11 14, or QLife 3pm-12am on 1800 184 527, or the equivalent support service in your country. It also contains spoilers about the book and the film Me Before You.
    'Me Before You' is released in Australian cinemas today. I saw the film last night (at a special 'girls' night out'), and have read the book. (Yawn!) However, I had formed an opinion about the film before I had seen it, based on others’ valid commentary, and my own experiences and insight into disability themed and led media ...
    Film sparks protests over disability portrayal
    Tom Nightingale, AM (ABC radio), 17 June 2016
    Disability advocates are campaigning for a boycott of a newly-released film that depicts a disabled man who turns to euthanasia. They're calling it a "disability snuff film", and it's following on from protests in London and New York ...

    Intelligent Lives - Can any attempt to measure intelligence predict a person’s value?
    Michael Gill, Psychology Today, 10 June 2016
    “The IQ test told us nothing about Jesse’s potential. About who he was as a person. Can any attempt to measure intelligence predict a person’s value or potential to contribute meaningfully to the world?” ...

    Heather Kirnlanier, Star in Her Eye, 5 July 2016
    ... When my husband and I received Fiona’s diagnosis five years ago (a diagnosis that informed us our daughter would have moderate to severe—or perhaps profound—intellectual disabilities) I still had to go to work. I still had to pay bills. I still had to pump gas, and one day I found myself pumping a tank of gas, talking into a cell phone, sobbing to my sister, and saying two sentences. The first: “I didn’t sign up for this.” (Indeed, I did. I just didn’t know it.) The second: “I can’t fix this.”

    The unfixability of Fiona’s syndrome was utterly devastating. Here was a problem and there was no solution ...


    Why Are We Sympathetic To The Murderers Of Disabled Children?
    Elizabeth Picciuto, The Establishment, 23 June 2016
    Edmund is my sweet, sunny six-year-old son with twinkling green eyes, a dimply smile, and an abiding love of aquariums.

    But here’s the horrible truth: If I were to murder him, the justice system might only give me a relative slap on the wrist. In fact, the media would likely portray me with respect and even sympathy ...

    People with Down syndrome


    Sunshine on canvas
    Amber Wilson, The Courier, 4 July 2016
    Her work has been described as a bit Gauguin, a little bit Ken Done, and a bit Alice In Wonderland, with a nod to Jenny Kee. Anne Chibnall’s bold, energetic and bright floral expressions are anything but dull ...

    How two best friends with Down syndrome from Rhode Island made the kickass action movie of their dreams
    Kevin Slane, Boston Globe, 9 July 2016
    The inspiring story of Sam and Mattie and their very own zombie film ...

    Thomas Cullen's online work video plea delivers a job
    BBC News, 28 June 2016
    Thomas Cullen, 20, who has Down's syndrome, posted a video having failed to find a job after months of trying ...

    Is Andrew in today?
    BC Partners in Workforce Innovation
    This is heard on a daily basis at Edgewater Casino ...  by the new cool kids on the block! It’s asked with excitement, enthusiasm, and hope that he’s actually working that day. How many people do you work with where others stop by to ask if he/she is in?

    Pablo Pineda; the man who proves nothing is impossible
    Bright Vibes, 4 May 2016
    Nobody exemplifies better than Pablo Pineda that nothing is impossible; the first European with down syndrome who graduated from University, is a an awarded actor, teacher and motivational speaker ...

    Sam Moorfoot is living his dream job and inspiring Geelong Cats with his positive attitude
    Greg Dundas, Geelong Advertiser, 25 June 2016
    The Geelong Football Club did not ask for this story to be told, nor did Sam Moorfoot or his family. It unfolds behind the closed doors at Kardinia Park once a week without fuss or fanfare but with plenty of genuine affection. It’s the story of a young man who does not want special treatment but is relishing the unique opportunity he’s been given ...

    Oliver Hellowell, photographer
    UK photographer Oliver Hellowell's website has been revamped and relaunched. He invites you to check it out, and tell him what you think of it, and of course you are welcome to order prints from his online galleries.

    Tuesday, 12 July 2016

    Craig Wallace steps down from presidency of PWDA

    .From People with Disability Australia, 11 July 2016:
    People with Disability Australia welcomes our new Acting President Bonnie Millen, and Acting Vice-President Kristy Trajcevski. As required under the constitution a full election where all members can nominate and vote for the President and PWDA Directors will be held in September - October. 
    PWDA pays tribute to our outgoing President Craig Wallace for his work to advance the rights of people with disability across Australia. Craig's leadership has been essential in advocating for the NDIS, speaking out about violence and being a strong voice for people with disability in public life. We all appreciate strongly his commitment to change and his position as a champion for equality for people with disability. 
    Read his farewell message here.
    President of People With Disability Craig Wallace Steps Down
    Wendy Williams, Probono News, 11 July 2016
    President of People With Disability Craig Wallace said it was time to “pass on the baton” as he announced he was stepping down early ...

    Eye Flowers: an exhibition of recent works by Digby Webster


    Friday, 8 July 2016 - Friday, 2 September 2016
    Blend Cafe at the Dougherty Community Centre, 7 Victor St, Chatswood
    Visit the solo exhibition of exuberant images from prolific artist Digby Webster in the Dougherty Community Centre at Blend CafĂ©. 
    Digby approaches art as a natural part of daily life. He works in the mediums of oil pastels, acrylics, felt pens and inks. Digby enjoys strong, evocative colours and has an expressive visual language of his own. He has Down Syndrome and currently works at the Australian Council of the Arts.
    Special event: Eye Flowers - A Celebration of Digby Webster's works
    Join us to celebrate Digby Webster's solo exhibition.

    Friday, 15 July 6pm-8pm
    Blend Cafe at the Dougherty Community Centre, Chatswood

    Monday, 11 July 2016

    Research news and commentary #8 for 2016

    UK Down Syndrome Research Forum 2016
    Down Syndrome Education International - regular international event where researchers and practitioners meet to discuss current research, recent findings and implications for practice.Keynote speakers: Dr Chris Lemons (Vanderbilt University) known for his research on reading and education and Dr Alexandra Perovic (University College London) whose research focuses on language and bilingual issues. Program details available mid-July.
    5 and 6 September 2016 - York

    Further commentary on green tea study (link here):
    KM Chitty et al, Aust N Z J Psychiatry April 2016 vol. 50 no. 4 352-362
    ... The findings are in line with the wider literature in younger people, showing a high degree of prescription and polypharmacy. Within the sample, there seems to be adequate rationale for central nervous system medication prescription. Although these data do not indicate non-adherence to guidelines for prescribing in intellectual disability, the high rate of polypharmacy and its relationship to Developmental Behaviour Checklist for Adults scores reiterate the importance of continued medication review in older people with intellectual disability.
     
    Rafael Ferreira et al, Plos One, 29 June 2016
    ... Conclusions: This systematic review demonstrated the importance to early introduce DS patients into preventive programs and periodontal therapy. Thus, the participation of parents, caregivers or institutional attendants in supervising/performing oral hygiene is essential for prevention and control of the periodontal disease. In addition, frequency of attendance and association with chemical adjuvants (independently of the periodontal treatment adopted) seems to improve periodontal outcomes in preventive and periodontal treatment of DS patients. More clinical trials about preventive and periodontal treatment in DS patients are needed, including antimicrobial agents and other adjuvant treatments.
    • Plos One is open access and peer reviewed.
    Survival of Patients With Down Syndrome and Congenital Heart Disease
    M. Regina Lantin-Hermoso, American College of Cardiology, 28 June 2016
    What is the impact of Down syndrome (DS) and Eisenmenger syndrome (ES) in the survival of patients with congenital heart disease (CHD)? ...

    Uptake, outcomes, and costs of implementing non-invasive prenatal testing for Down’s syndrome into NHS maternity care: prospective cohort study in eight diverse maternity units
    Lyn S Chitty, British medical Journal, 2016; 354 doi: http://dx.doi.org/10.1136/bmj.i3426 (Published 04 July 2016)
    ... Conclusions:  Implementation of NIPT as a contingent test within a public sector Down’s syndrome screening programme can improve quality of care, choices for women, and overall performance within the current budget. As some women use NIPT for information only, the Down’s syndrome live birth rate may not change significantly. Future research should consider NIPT uptake and informed decision making outside of a research setting.
    • Open access
    La Trobe University researchers investigating how to improve social lives Emma D'Agostino, Bendigo Advertiser, 6 July 2016
    La Trobe University researchers are investigating ways to increase social inclusion for adults with an intellectual disability ...

    Chromosome 21?: UCI researchers studying link between Down syndrome and Alzheimer’s
    Courtney Perkes The Orange County Register, 6 July 2016
    When Ruth Russi was born with Down syndrome in 1959, her parents were told she would die before her fifth birthday. By the time Ruth turned 50, John and June Russi of Costa Mesa, Calif., began to prepare for her outliving them ...

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


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

    Dr Roy Brown and Dr Nancy Jokinen
    Tuesday 23rd August, 2016  9:00am – 4:00pm

    SMC Conference and Function Centre, 66 Goulburn St, SYDNEY

    $155 members,  $175 non members


    Friday, 8 July 2016

    Weekend reading and viewing: 9 - 10 July 2016


    Advocates raise concerns over casual demeaning of people with disability at Wimbledon
    Disability Australia, 8 June 2016
    In the past week two high profile Australian tennis players have caused a wave of sadness and anger in the disability community by using the word ‘retard’ at Wimbledon.
    Today, Disability Australia, representing over 200,000 Australians with disability, called for Tennis Australia to better educate its players. 
    “People with disability often face everyday exclusion through casual slurs and insults,” said AFDO President, Mr Trevor Carroll. “Over time, demeaning language has a profound effect on how society views people with disability and how we view ourselves. 
    When high profile tennis players like Nick Kyrgios and Bernard Tomic use demeaning language casually, they reinforce that hurt, especially for people with intellectual disabilities like Down syndrome.” 
    Down Syndrome Australia, a member of Disability Australia, has acted swiftly. In a letter to Tennis Australia they have called on the sporting body to offer Kyrgios and Tomic education about Down syndrome, and to be more proactive in their general disability awareness. 
    “We believe this is an opportunity for Tennis Australia to step up its work in disability awareness and inclusion,” said Angus Graham, President of Down Syndrome Australia. “It’s our hope that they will work collaboratively with us to make sure we build more positive community attitudes towards people with Down syndrome, and people with disability more broadly.”
    Our story: A vision of majesty at Greek Easter
    Mark Leach, Down Syndrome Prenatal Testing, 23 April 2014
    ... You just can’t see that far out to see how life will develop for your child. Any child. Even those who society, school systems, state insurance programs, and doctors will easily and immediately label: “Down syndrome,” “intellectually disabled,” “mild to moderate mental retardation.” Even with those labels, it does not tell you what your child’s life can become ...

    Thoughts on the Down syndrome narrative
    Big Blueberry Eyes, 29 June 2016
    Someone left a comment on my previous post - Down Syndrome is a Blessing...or Is It? - that I wanted to reply to ... My viewpoints don't have to "align with the general viewpoint of others raising children with Down syndrome." I missed the memo that said now that we have raising children with an extra chromosome in common we all have to think and believe in the same things ...

    100 hours of placement was all I needed
    Melinda nay, NSW Council on Intellectual Disability blog, 5 July 2016
    ... I am a university student, a swimming coach and an older sister to Megan, she is 14 years old, and has Down syndrome ... When selecting my placement for my university course, I knew I wanted to be a part of the CID team. Even though it was only for a short time, I knew that CID would be able to provide me with knowledge and experiences that other organisations wouldn’t be able to. For example, being involved in NDIS focus groups, NDIS training workshops, presentations to other university students, learning how to do easy-read documents, helping with event launches, celebrating other advocacy services milestones, and most importantly networking with other advocacy services and learning how they support people with a disability ...

    My Brother is Not Cute—He’s a Badass
    Maggie Heffernan, Ruderman Family Foundation, 5 July 2016
    Recently at a sports event, a friend approached me to share how excited he was to meet my brother. “Your younger brother—he is just so cute,” he gushed, gesturing towards the seat where my brother was sitting. I feigned a smile and nodded at him, pretending to match his enthusiasm as he proceeded to talk about the “benefits of people with disabilities” and how profoundly his son had been affected by meeting someone with autism the other day. Besides the fact that my brother is three years older than I am, there is something else wrong with my friend’s statement: my brother is not “cute”—he’s a badass ...

    Does it help disabled people to let them win?
    Laurence Clark, BBC News, 4 July 2016
    A video has gone viral of schoolchildren slowing down to let a disabled classmate win a race. Laurence Clark, a comedian with cerebral palsy, is not sure he wouldn't rather lose ...

    'Hi Mum. Hi Dad. Love ya' - girl with Down syndrome the star as she video bombs TV presenter
    TVNZ, 6 June 2016
    A TV report from an Australian shopping mall ended with what the presenter calls one of the nicest "video bombs" he's had while filming ...

    'Understanding a Down Syndrome Diagnosis' now released as a web app

    An excellent resource, in a new, accessible format, from a highly credible source:

    From Lettercase, publishers of good quality information for new and expectant parents:
    Since 2008, Understanding a Down Syndrome Diagnosis has been the most valuable resource for women receiving a prenatal diagnosis. Today we introduce this life-changing resource as a free web app, available at http://UnderstandingDownSyndrome.org.  
    And continuing our goal to reach even further, to support even more parents, we have made the app available in eight languages: Chinese (Simplified), English, Japanese, Korean, Russian, Somali, Spanish and Vietnamese. 
    Please join us in making sure all expectant parents get the resources and support they need. Feel free to share the link to these life-changing resources via social medial, email and organization websites. #sharelettercase
    Please consider taking up the invitation to share widely - if you have a son or daughter with Down syndrome of any age, you will be asked to help others find information and resources from time to time. If you use Facebook, you can 'share' the Lettercase post from today (it will be dated 7 July 2016) to save it on your own timeline where you might find it more easily. A number of 'share' options are provided in the bottom right corner of the web page.

    All options (print and online) are listed here.

    Thursday, 7 July 2016

    Resources on health

    Supporting people with Dual Diagnosis – Intellectual Disability, Mental Health and Rights-based Approaches
    This e-book will help you understand the vulnerability to psychological stress and development of mental health concerns in persons with intellectual disabilities. The e-book is online and free to access. Published by New Brunswick Association for Community Living (Canada).
    Introduces definitions and historical context related to intellectual disability, mental health, advocacy and human rights. It is important for those working with individuals with ID to understand this population’s vulnerability to psychological stress and the development of mental health concerns. This module is designed to provide foundational information and knowledge regarding dual diagnosis, as well as person-centered approaches to service and care.

    Thanks to Queensland Centre Intellectual Disability for the recommendation.

    The health check: What is it and what do staff need to know?
    Yona Lunsky, Dara Abells, Ian Casson, Laurie Green, Bill Sullivan, Service, Support and Success, Vol 5 Issue 7, July 2016
    This newsletter is just what the doctor ordered (four doctors actually, and a psychologist). This is a no-nonsense discussion on the importance of the health check and how you as staff can make a difference with the individuals that you support ...
    Patient resources
    A range of information handouts for patients is available online from the Down Syndrome Program at Massachusetts General Hospital in Boston.

    News and commentary on the NDIS (50)

    As the National Disability Insurance Scheme rolls out nationally from this week, there is a great deal of information coming from the scheme, and from external sources:

    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

    Launch of new participant portal
    The new NDIS Participant Portal opened on 1 July -  it is called myplace. You will need to log in as usual on this linkSome of the processes have changed. Here is a link to a step-by-step guide to the new participant portal.

    Launch of CID Connect
    NSW CID e-news, June 2016
    CID Connect is our new online forum where you can ask and answer questions about how the NDIS might affect you. 
    CID Connect is supported by members of our community engagement and information services team and allows anyone to log on for free and ask a question of the community as well as being able to browse around and see what other people have been discussing.
    Every month we will have a new focus topic to help you be more prepared for the NDIS whether you are already on a funding package, are waiting for rollout or have no idea where to start. 
    Currently, our topics include planning, supports and getting to know each other. 
    We encourage you to jump online and try out this amazing new tool. Be the first to contribute to what will become an amazing source of knowledge. Click here to check it out and participate!
    Understanding the NDIS: will parents of newly diagnosed children with disability be left in the dark?Alison M Marchbank, The Conversation, 7 July 2016
    The National Disability Insurance Scheme (NDIS) emphasises a commitment to social justice that values a person’s right to choose and purchase the service they want to support their everyday living.

    Can co-ops help deliver Australia’s National Disability Insurance Scheme? 
    Rebecca Harvey, Co-operative News, 5 July 2016
    One of the first accessible display homes for people with a disability will be built at Armstrong in Mount Duneed ...

    Understanding the NDIS: a history of disability welfare from ‘deserving poor’ to consumers in control
    Paul Ramcharan, The Conversation, 5 July 2016
    The National Disability Insurance Scheme (NDIS) is the only national scheme of its kind in the world. Its introduction has been likened to a generational shift with some saying the scheme’s impact will be similar to that of Medicare ...

    NDIS stimulates small business with radical new approach
    Bhakthi Puvanenthiran, Sydney Morning Herald, 23 June 2016
    Just as the internet has forever changed shopping, the National Disability Insurance Scheme (NDIS) has swept into the disability service industry and almost everyone is starting from scratch, giving start-ups and small businesses a hand up ...

    Disability funding reform 'disappoints' ethnic communities
    Stefan Armbruster, SBS News, 27 June 2016
    A radical $22 billion reform of disability services across Australia has largely failed to engage people from non-English speaking backgrounds ...

    Holding on to the heart of the NDIS: how the NSW planning process is shaping up
    Libby Ellis, InCharge, 22 June 2016
    ... I have never felt that an NDIS will come as a fully-formed utopia that lands in our laps. Change doesn’t come from the top down. Any great change I have ever witnessed has happened from the grassroots, where people see a reform as an opening and an opportunity for them to grasp and shape as a way to better their own lives ...

    A housing problem solved is a pleasure shared
    Miki Perkins, The Age, 17 June 2016
    ... Despite wanting independence for their daughters, their families had little option but to keep them at home. But over the past three years their hometown of Geelong has been a trial site for a seismic shift in disability support: the introduction of the National Disability Insurance Scheme. For the first time, when they drew up their yearly support plan, the three women and their families were asked what "a good life" would look like ...


    NDIS rollout in Sydney: not perfect but at least it's here
    Rachel Browne, Sydney Morning Herald, 18 June 2016
    ... "The sooner the support is delivered, the much better the outcomes for the individual but also for society at large," (John della Bosca) said. "One of the strongest arguments in favour of the NDIS is the cost of doing nothing. If we were to continue with the old system there will be higher costs to the health system, the mental health system, juvenile justice and corrective services" ...

    Raising Children Network - guide to NDIS

    Permanent and significant disability and reasonable and necessary supports
    NDIS, 13 June 2016 (video, 4m 38s)



    Norman Hermont, ABC News, 12 June 2016
    The National Disability Insurance Scheme (NDIS) faces a huge shortfall in disability housing when it is fully rolled out in 2020 ...
    John Gilroy, Croakey, 29 April 2016
    The National Disability Insurance Scheme (NDIS) presents a significant opportunity to revolutionise the quality of care and support to enable Indigenous people with disability to access the supports and services necessary to enable them to work towards full participation in their communities ... However, a lack of accountability from the National Disability Insurance Agency (NDIA), the authority managing the roll-out of the NDIS, in reporting on Indigenous peoples’ satisfaction of the NDIS will impede any developments in establishing a culturally responsive disability service system for Indigenous peoples ...

    Wednesday, 6 July 2016

    Betty Hook, 1927 - 2016

    We were sorry to hear that Betty (Elizabeth Mary) Hook died on 1 July, at the age of 89.

    Betty was a highly regarded and much loved early childhood intervention teacher in the pioneering Macquarie University Down Syndrome Program in the 1970s, and in its community implementation from the early 1980s, principally at the Early Education Clinic at North Sydney

    In addition to her then rare qualifications in early childhood intervention, families of children with Down syndrome (and later other disabilities) appreciated Betty's warmth and interest in their whole family. She greeted everyone by name (even if she'd had to check it up as you walked in the gate), and reassured every parent that their child was the most beautiful she had ever seen, that she had been hoping to be appointed as their one-on-one teacher, and that they were doing a superb job of parenting.

    Betty was a great supporter of the plan to establish the Down Syndrome Association of NSW through which parents and families would support each other, from its very earliest days. As the mother of eight children and grandmother of many more, she valued what such an organisation would be able to offer.

    She maintained her interest the organisation and its members, even after her retirement, and was delighted to be invited to have the debutantes formally presented to her at our 20th Anniversary Debutante Ball in 2000 - she had taught most of them as babies and preschoolers, and remembered them all.

    The Board and members of Down Syndrome NSW are very thankful for the work and life of Betty Hook, over so many years, supporting so many people with Down syndrome and their families, and we extend our deepest sympathy to her family in her loss.

    Betty's funeral will be held at Northbridge this Friday, 8 July - the funeral notice is here.

    Latest additions to 'events' page

      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 

      Murmur Workshops - series 2 for 2016
      Murmuration Integrated Performance Company - series of eight weekly workshops open to the community to explore improvised movement, develop dance skills, activate individual creativity and learn theatre exercises. Interested participants will take part in an end of year sharing. All Teaching Artists are experienced and qualified to deliver high quality dance and theatre workshops, for a variety of ages and for people with and without disability. 
      19 July - 6 September 2016 - Marrickville

      Speech Pathology Week 2016
      Speech Pathology Australia - Speech Pathology Week seeks to promote the speech pathology profession and the work done by speech pathologist with the more than 1.1 million Australians who have a communication or swallowing disorder that impacts on their daily life.
      The theme for Speech Pathology Week in 2016 is: Speech Pathology – Creating Futures! highlighting the Speech Pathology 2030 project, while reinforcing the important role that speech pathologists play in the lives of Australians with speech and swallowing difficulties.
      7 - 13 August 2016

      ‘Wish you weren’t here’: A review of nature and ethics of the growing trend towards the elimination of persons with disabilities
      Centre for Disability Studies - the 2016 Trevor Parmenter Lecture will be given by Professor Tim Stainton. 'With the passage of the CRPD, new innovations in support such as the NDIA and increasing legal and public recognition of people with intellectual disability it would be easy to think we are living in a golden age and progress toward full and valued citizenship is inevitable. While much of the above may be true, there is a dark ‘undertow’ which is pulling ever more strongly in a more sinister direction. '
      Monday 29th August 2016 - Sydney

      UK Down Syndrome Research Forum 2016
      Down Syndrome Education International - regular international event where researchers and practitioners meet to discuss current research, recent findings and implications for practice.Keynote speakers: Dr Chris Lemons (Vanderbilt University) known for his research on reading and educationand Dr Alexandra Perovic (University College London) whose research focuses on language and bilingual issues. Program details available mid-July.
      5 and 6 September 2016 - York (UK)

      Nepean Disability Expo 2016
      16 -17 September 2016 - Penrith

      Murmur Workshops - series 2 for 2016
      Murmuration - series of eight weekly workshops are open to the community to explore improvised movement, develop dance skills, activate individual creativity and learn theatre exercises. Interested participants will take part in an end of year sharing. All our Teaching Artists are experienced and qualified to deliver high quality dance and theatre workshops, for a variety of ages and for people with and without disability. Guest teacher details.
      19 July - 6 September 2016 - Marrickville

      Having a Say Conference 2017
      The Having A Say Conference has been going sence 2000, it's not like any other conference as it is designed for people with disabilities and their supporters, not for service providers. 
      8 - 10 February 2017 - Deakin University Waterfront Campus, Geelong (Vic)