Post-school expos

Weekend reading and viewing: 30 - 31 July 2016

Actors with Down Syndrome take spotlight at Chicago Shakespeare Theater

Vikki Ortiz Healy, Chicago Tribune, 27 May 2016
Even their parents had serious doubts: How could a group of theater students with Down syndrome perform a play by Shakespeare — with its conflicted characters, surprising plot twists and quick-paced soliloquies?

When You Are the Father of a Child With a Disability, Stereotypes of Manliness Disappear
Mel Beck, The Good Men Project, 24 July 2016
Behold! Fatherhood. Manliness optimized. This is your golden moment as the dominating species and you have everything—a wonderful wife, a great job, a beautiful home, and now, children. You are right on track for a cup runneth over with fulfillment. Soon to come are baby’s first steps, the first day of kindergarten, sporting achievements, first dates, graduations, college, weddings, grandchildren, and more. You are The Man and you are providing for your family. Life could not get better ...

8 ways to include kids with special needs in programs, events, classes, camps, wherever

Love That Max, 16 July 2014
As parents of kids with special needs, we want our kids to enjoy the same activities that other kids do—but in reality, it doesn't always happen. My son has been turned away from programs and recreational activities, as have the children of many distressed parents I hear from. So I asked the CEO of Kids Included Together (KIT) Torrie Dunlap, to share a practical list with how-tos. This nonprofit teaches inclusive models to YMCAs, Boys & Girls Clubs, city recreation programs and preschools, among others. Serving more than 20,000 people a year, KIT has worked in 45 states and 10 countries. Clearly, they know what they are doing ...

What will you do when he grows up?
Mardra Sikora, Listen to Your Mother, 14 July 2016
Mardra tells the story of raising her son with Down Syndrome and how she learned to answer the question, "What will you do when he grows up?"



Focus on Ability Short Film Festival - online viewing and voting
You could make it a movie weekend, with the Focus on Ability Short Film Festival - 194 entries from 18 countries are now up on the website for viewing and online voting. We haven't had time to look at all of them yet (!)  and they are all worth watching, but we have seen these two that feature people with Down syndrome:

Dance is Life (John Rado)
I am (Studio ARTES Northside Inc)

• Focus on Ability on Facebook

If you wish to follow up on the responses of people with disabilities to the attack in Japan on 26 July, a list of links is at the end of this compilation of tweets from activist Alice Wong:

Ableism, Violence and Sagamihara
Alice Wong, Disability Visibility Project, 27 July 2016
... If you are non-disabled and unfamiliar with #ableism, what happened in #Sagamihara is a clear-cut example of as you’ll ever get ...

News and commentary on the NDIS (51)

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 eNews Issue #22, 26/07/2016

National Disability Insurance Scheme website

NDIS Ready
Archive of the NDIS webinar broadcast on 7 July 2016
... Hear from our panel as they discussed what it means to be an NDIS participant, how people will enter the NDIS and how it is being rolled out. The panel shared first hand experiences of the NDIS, lessons learnt from trial and tools and tips for getting ready ...

My NDIS Pre-Planning kit Advocacy for Inclusion
Over 20 pages of plain english information and Easy English worksheets. Use this booklet to identify:

1. What you are doing now in each area of your life
2. What would you change in each area if you could?
3. How could you make these changes happen?
4. How will you keep these changes permanent?

By identifying these 4 things, it will help you work out what supports you want and who you would like to support you.

Available in hard copy only - ordering details 

The NDIS is not enough - we need strong advocacy tooVictorian Council of Social Services, 1 July 2016
The National Disability Insurance Scheme will give people with disability many things, including choice, control, and a lifetime approach to their needs. But these advancements must not come at the expense of something equally important: their voice.

Strong, independent advocacy empowers people with disability, their families and carers. It helps them understand their human and legal rights, communicate their needs, and have those needs met. It also helps promote these rights to the wider community and acts as a safeguard against abuse or neglect ...

Porter prioritises savings to fund NDIS, childcare for Senate talks
Laura Tingle, Australian Financial Review, 25 July 2016
Social Services Minister Christian Porter has nominated a $1.4 billion budget saving that is to be redirected to the National Disability Insurance Scheme and cuts to family tax benefits to fund the Coalition's childcare package as his priorities for Senate negotiation when parliament meets next month ...

NDIS ILC Consultations Summary Report released NSW CID e-news, July 2016 The NDIS held consultations about the Information, Linkages and Capacity Building Commissioning Framework. CID ran one of the consultations for people with intellectual disability. Click here to read the report.

People get ready… as the NDIS becomes a reality

George Taleporos, Every Australian Counts, 19 July 2016
Up until now, for many of us living with disabilities or caring for someone with a disability, the National Disability Insurance Scheme (NDIS) has been something that we have only advocated for and dreamt about. But on 1 July, the NDIS moved from trial phase to full rollout and for thousands of Australians, the advocacy will finally pay off and it will be time to turn those dreams into reality. Here is some advice on what you need to do to get NDIS ready ...

Disability service standards at risk
AAP, 9 News, 20 July 2016
Disability service providers who most need to upgrade staff training may not do so because of the costs under the NDIS structure, a child protection expert warns ...

Podcast: Is the Disability Sector NDIS Ready?Ellie Cooper, Probono News, 7 July 2016
The National Disability Insurance Scheme promises choice and control for people with disability, but both Not for Profits and participants face teething problems as the service is rolled out nationwide ...

Understanding the NDIS
The Conversation, 6 - 13 July 2016
A series of seven articles on various aspects of the National Disability Insurance Scheme, and the population it aims to serve, the supports it can fund, and some perceived limitations.

NDIS is a game changer full of opportunities Graeme Innes, Sydney Morning Herald, 14 July 2016
John was 40 when his quad bike rolled. Two vertebrae were crushed causing paraplegia. After a time in hospital, John did not return to his wife and kids on their Hunter Valley farm. He had high support needs and went to live in an aged care facility. The impact of his disability on John and his family was stark – he lost a loving family, and they lost a husband and dad.

Q and A with Upcoming Leader Quang Nguyen

My Choice Matters, July 2016

I attend workshops with other people with a disability or people who are carers of a person with a disability. We learn how to develop our skills in public speaking, organisation, team work, and how to think outside the square. I learn about leadership and how to use that in my own life and with people in the community ...

Abuse hearing takes NDIS focus    

AAP, Sky News, 19 July 2016
The child sex abuse royal commission will spend two days hearing from government agencies and NGOs on the quality of services provided to keep children with disabilities safe in institutions ...

Quality Living for Individuals and Families: seminar

SMC Conference and Function Centre, 66 Goulburn St, SYDNEY

$155 Down Syndrome NSW members,  $175 non members

Register now!

Flyer

NDIS Champions: paid employment opportunity for people with disabilities

The Australian Federation of Disability Organisations (AFDO) is the national voice representing people with disability in Australia. AFDO and our member organisations are run by and for people with disability, which we believe is very important to truly represent the voice and lived experience of people with disability.

AFDO is looking for 30 people with disabilities to become NDIS Champions. We are especially interested in emerging grassroots leaders – people who are great communicators with a fresh voice.

NDIS Champions programPeople with disabilities are not often asked to provide information about the National Disability Insurance Scheme (NDIS) to their peers and community. AFDO is now offering an NDIS Champions program that will put together a group of people with disabilities from all around Australia who can confidently provide information on the NDIS. Training will be provided to the NDIS Champions to make sure they have the necessary skills and knowledge.

Who can apply?

• The NDIS Champions Program is only open to people with disabilities
• Applicants must provide an Australian Business Number (ABN); either a personal ABN or through their employer (not AFDO)
• Applicants must be covered by insurance; either personal accident and indemnity insurance, or WorkCover through their employer (not AFDO)

• All details are here, on the Disability Loop website

Education matters: new resources and calls for investigations of abuse

The first two of these links are to newly released resources, but both the IncludED section of the Starting with Julius website, and the SWIFT You Tube channel are good sources of many others, and well worth book-marking. The last two highlight ongoing calls for investigation into incidents of abuse of disabled students in Australian schools - this too is confronting (see previous post), but a current matter of real concern:

Making the 'big idea' achievable: including all students in the same curriculum - practial tips for teachers (N0 4, Part B)

Robert Jackson and Catia Malaquias, Starting with Julius, July 2016
This is the Part B of the fourth article in a series of short articles aimed at providing practical tips for teachers to improve the inclusiveness of their general education classrooms. You can read the earlier articles at SWJ IncludED and their respective titles and weblinks are also listed at the end of this article ...

• Starting with Julius on Facebook

Together, and Whatever it Takes
Schoolwide Integrated Framework for Transformation (SWIFT), University of Kansas, 23 July 2016
Two new, free documentary films showing inclusive education in action at schools in Maryland, Mississippi and Oregon. These two films are available on the SWIFT Youtube Channel for unlimited distribution and screening. 

Call for UN to investigate treatment of disabled students (audio file 10m 53s)

Jonathon Green, Radio National Drive (ABC radio), 21 July 2016 6:15PM
A group of disability organisations has asked the United Nations to investigated dozens of incidents in which children were allegedly assaulted, locked-up and restrained in Australian schools.

The harrowing cases were collected by six groups including Autistic Family Collective, Children and Young People with Disability Australia, United Voices for People with Disabilities and disability advocate Julie Phillips.

But what exactly can the UN do, and have all domestic options been exhausted?
UN asked to probe ‘school system in crisis’Robert Ballantyne, The Educator 25 July 2016
The United Nations has been asked to investigate dozens of incidents involving assault against children with a disability in Australian schools ...

Commentary on the attack in Japan: disability perspective

How do people with disability feel about the very recent attack on people with disability in Japan, and the way it has been reported?  As distressing as it is to confront, people with Down syndrome are not exempt from such actions, we cannot assume they will not know about it, and need to process unwelcome information and the feelings it engenders. There will be more commentary (perhaps not much in the mainstream press) - here is Dave Hingsburger's immediate response:

Japan, Hate and 12 Days

Dave Hingsburger, Of Battered Aspect, 26 July 2016

... His statement to the police upon turning himself in that 'it's better that disabled people disappear' isn't a deranged rant by someone out of control, it's a calm statement of fact that echoes the sentiment of many in society. People with disabilities know this sentiment, we hear it, we experience it and we have come to fear what it will do. Our lives are devalued, are needs seen as special and therefore burdensome, our rights are declared to be gifts rather than guarantees ...

• The Guardian's article referred to in the blog post: Japan care home attack: picture emerges of modest man with horrifying vision

And from disability journalist and blogger, David Perry (who is also the father of a young son with Down syndrome):

Violence, Disability, and the Lessons of Sagamihara

David Perry, Pacific Standard, 27 July 2016
The ableist attack on a residential center for people with disabilities highlights the violence that disabled people face around the world — and how far we have to go ...

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.

Arts news (2): dance workshops; Irish film

The Right Foot workshops for 2016 are open for registration

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

• DirtyFeet on Facebook

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

• Follow Focus on Ability Short Film Festival on Facebook

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

• All news about 'Having a Say' is posted to the conference Facebook page

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 ...

The moving story of Judith and Joyce Scott will make you believe in twin magic

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 ...

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

• All gymnastics results

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

Latest additions to '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 

Eye Flowers: an exhibition of recent works by Digby Webster

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

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. 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)

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

• Swimming results
• Gymnastics results

Thursday 21st July is the final day of competition, and includes rhythmic gymnastics.

• Trisome Games 2016  on Facebook, and on Instagram follow #trisomegames2016

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:

• Your consumer rights: a guide for consumers with disability
• Information for consumers with disability
• Your rights when you buy something

Each resource is available in a range of languages and formats, including audio.

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.

• Details of eligibility and how to apply 

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!

• Note - this post is part of a series Fair Is Not Always Equal…Now What?

 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.

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

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:

Australia contest Trisome World Games

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.

• The program for the games is here -  results will be posted throughout. Competition starts on Sunday 17 July.

• Trisome Games 2016 are on Facebook, and on Instagram follow #trisomegames2016

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

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?” ...

On Radical Acceptance (and Not Fixing Your Kid)

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.

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 Café. 

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

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):

• Green tea extract 'boosts mental ability' in people with Down's, (UK) National Health Service News, 8 June 2016
• Statement on CLEMATIS trial, Roche,  28 June 2016
• Response to the Roche Clinical Trial for CLEMATIS, Ellen Oliver, Lumind, 28 June 2016 

Central nervous system medication use in older adults with intellectual disability: Results from the successful ageing in intellectual disability study

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.

 

Prevention and Periodontal Treatment in Down Syndrome Patients: A Systematic Review

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 23^rd August, 2016  9:00am – 4:00pm

SMC Conference and Function Centre, 66 Goulburn St, SYDNEY

$155 members,  $175 non members

Register now!

Flyer

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.”

• Click here to learn more about ending the R-word

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 ...