Address details

Down Syndrome NSW
Level 6/410 Church St, North Parramatta
9am-5pm Monday - Thursday
T: 9841 444

Friday, 28 November 2014

Weekend reading and viewing: 29th - 30th November 2014

A big day for the equal rights of people with intellectual disability
Inclusion Australia, 25th November 2014
Monday, 24th November 2014 has been a big day for standing up for the equal rights of people with intellectual disability.

First, the Senate rejected the Government’s bill to introduce the BSWAT Payment Scheme Bill ... Second, the Australian Law Reform Commission proposes reform to Commonwealth and State laws to ensure that supported decision making is encourage with the right support provided ... Third, ABC 4 Corners exposed sexual abuses of people with disability by carers employed by Yooralla, and a governance culture that was inadequate to protect people with disability from this abuse ...

Can She Feel?
Dave Hingsburger, Rolling Around in My Head, 25th November 2014
Horror, yes. Disgust, yes. Surprise, no. Like many of you, when I heard that in a Los Angeles court an expert testified that a 9 year old girl with an intellectual disability would not experience trauma because, essentially, the less intelligent you are, the less trauma you will experience. Further he stated that, even though this girl was repeatedly assaulted her disability was a 'protective factor' regarding trauma ...

Down Syndrome Bowling Group at SuperStrike Warners Bay
Simon Walker, Newcastle Herald, 24th November 2014
It's never easy moving cities. Finding contacts and friends takes time. Getting familiar with services is a matter of doing the hard yards.And bringing up kids adds another dimension, particularly if they have special needs. But Lisa Taylor knows when to strike, and bowling is right up her alley ...

Why the Film 'Menschen' is Not “Just a Movie"
Mardra Skiora, Medium, 20th November 2014

I suppose everyone has a “button” phrase. Something said to them, even in passing, that hits a nerve. Today I am going to confess mine: “It’s just a movie.” ... No. It’s not. And personally, any movie worth its salt is not just a movie ...

The meaning of Mongol
Uuganaa Ramsay, Ouch (BBC News), 23rd November 2014
Uuganaa Ramsay was raised in Mongolia but now lives in Scotland. She has recently been exploring why her ethnicity is linked to Down's syndrome, a condition diagnosed in her son ...

Journal of Mental Health for Children and Adolescents with Intellectual and Developmental Disabilities: An Educational Resource, Vol 5, Issue 2, October-November 2014, published by the School-Link Initiative, Childrens Hospital at Westmead.
NDIS Newsletter, November 2014 issue

Poster from Enable Scotland's recently launched anti-bullying campaign:

'Practical Considerations': DS NSW webinar

Down Syndrome NSW is pleased to announce the first in a series of online presentations available exclusively to members.

Practical Considerations - Starting Kindergarten in 2015
Information for parents and carers
Do you have a child starting School in 2015? Judy and Catherine will be presenting practical ideas and strategies to assist your child's transition into kindergarten.
Practical Considerations - Starting Kindergarten in 2015 will provide information for parents on:
  • Practical considerations when preparing your child for school AND preparing the school for your child
  • Useful resources for parents and teachers
  • Registrations are essential for these online presentations and numbers are limited.
To register for Practical Considerations - Starting Kindergarten in 2015 please click on one of the following links:
Wednesday 3rd December 2014  - 10 am
Wednesday 10th December 2014  - 10 am
Wednesday 10th December 2014  - 1 pm
For more information or if you have any questions please feel free to contact Judy Davidson or Catherine Pedler on 9841 4401.

Thursday, 27 November 2014

The benefits of colouring - not just for kids

We know that many people enjoy colouring long past childhood, and that includes many adults who have Down syndrome. Elena Santos recently wrote about  a study on the psychology of coloring for adults, in the Huffington Post. She also writes about the growing popularity of colouring books designed for adults in Europe.

Until fairly recently, finding colouring books that were not obviously designed for young children was something of a challenge, but they are a little easier to find now.  Here are just a few online sources that might give hours of enjoyment:

Try googling 'colouring books for adults' for titles ... you might find more than you expect, and give you some ideas for age-appropriate gifts.

Let us know of you have found good sources locally in Australia, or have a favourite publisher you would like to recommend, at

#education21 - how educational research is helping children with Down syndrome today

Over the 21 weeks to World Down Syndrome Day 2015, Down Syndrome Education International is highlighting 21 examples of how educational research helps and why it matters. The series is now in its fourth week, and will continue until 21st March 2015:
Educational research improves the lives of people with Down syndrome. It provides the foundation for effective support, therapy and teaching for children around the world. Follow #education21 and join a conversation about the future of educational research for people with Down syndrome. 
Sign up for emails, and follow the series on Twitter, Facebook or Google+ to join the conversation. 
21 examples of how educational research helps and why it matters... 
#1. Signing improves early vocabulary learning and communication#2. Verbal short term memory presents specific difficulties#3. Reading can be a strength and support learning and language#4. Learning to talk is a particular challenge

Wednesday, 26 November 2014

Govt Rejects Disability Abuse Inquiry

ProBono News Australia, 25th November 2014

The Abbott Government has rejected calls for a national inquiry into allegations of abuse of people with disability in institutions.

Responding to questions from Greens Senator Rachel Siewert in Federal Parliament today, Assistant Minister for Social Services, Senator Mitch Fifield, said it was the responsibility of the State Governments to undertake any inquiries.

Fifield said that until the National Disability Insurance Scheme had been rolled out all complaints were to be reported and handled at the state level.

Senator Fifield noted that both the Victorian Liberal Government and the Opposition had promised to undertake an inquiry after this week’s election.

The calls for an inquiry were made after ongoing allegations of abuse and the mismanagement of complaints by a major disability service provider ... read more here.

  • A National Disability Abuse Inquiry website has been set up to provide links to the campaign for an inquiry, to highlight evidence of abuse, and to continue to inform interested Australians of developments.

2014 National Disability Award Winners

The winners of the 2014 National Disability Awards were announced last night at a ceremony in the Great Hall at Parliament House, Canberra. 

Congratulations to all of the award winners, and to the other finalists.

Tuesday, 25 November 2014

Disability Pension information for travellers

Inclusion Australia, the national peak body representing people with intellectual disability in Australia, maintains an archive of information about the Disability Support Pension.  The latest post explains what you need to know about your DSO if you are planning an overseas trip (to inform and reassure you):
Travelling to another country when on the Disability Support Pension There is a rule for how long a person can travel to another country and still get paid the disability pension. 
This is called ‘portability’ ...  read the whole article here.

Urgent calls for national inquiry: End violence against people with disability in institutions

Following last night's investigative report on Four Corners (ABC TV - alternative viewing options are listed here), Women with Disabilities Australia and People with Disabilities Australia have issued a joint media release calling for an urgent national inquiry into violence against people with disability in institutions:
Urgent Call for National Inquiry: 
End violence against people with disability in institutions

People with Disability Australia (PWDA) and Women With Disabilities Australia (WWDA) are outraged at the events that were portrayed in last night’s ABC 4 Corners program, ABC 4 Corners program, In Our Care. This program exposes the deliberate cover-up of shocking and pervasive violence and exploitation perpetrated against people with disability along with corruption and mismanagement by Yooralla, a large disability service provider in Victoria.

PWDA and WWDA stand with the survivors of these horrific events, and with the families, advocates, support workers and former staff who have spoken out about these criminal activities. We call for an immediate National Inquiry into violence, including gender-based violence against people with disability living in institutions and residential settings as a matter of urgency.

“The events exposed in the 4 Corners program last night are not a random occurrence confined to Yooralla or the State of Victoria. Violence against people with disability in institutional and residential settings, including the significantly higher levels of violence experienced by women with disability is Australia’s hidden shame”, said Ms Carolyn Frohmader, WWDA Executive Director.

Ms Therese Sands, PWDA Co-Chief Executive Officer noted, “We welcome the commitment by the Victorian Government and Opposition to conduct an enquiry into the events at Yooralla. However, time and again, we have seen State and Territory inquiries focus on violence in specific institutions and residential settings, but the systemic and prevalent nature of this violence across Australia is not addressed. We argue that it is time for a National Inquiry to address the endemic nature of violence, exploitation and abuse in institutions and residential settings”.

“A National Inquiry would respond to a number of United Nations recommendations that urge Australia to investigate and address, as an urgent priority violence against people with disability, in particular women with disability living in institutions and residential settings”, said Ms Sands.

Ms Frohmader also stressed, “Australia has not implemented measures to address violence against people with disability through its National Disability Strategy, nor has the issue of gender-based violence experienced by women with disability in institutions been included in the National Plan to Reduce Violence Against Women and Their Children. On this International Day for the Elimination of Violence Against Women, we say it's time that women with disability living in institutions were included in Australia’s response to eliminate violence against all women”.

PWDA and WWDA urge all who are concerned about this issue to sign the petition to urgently establish a national inquiry into violence, neglect and abuse against people with disability in residential and institutional settings.

For more information:
Factsheet: Violence against people with disabilities in Institutions and Residential Settings

Former disability discrimination commissioner calls for national inquiry into disability sector amid sexual abuse claims, Nick Grimm, The World Today, (ABC radio), 24th November 2014

Yooralla failings: no more excuses, Alan Blackwood, The Age, 25th November 2014

Disability Discrimination Commissioner calls for urgent action to protect people with disabilitiesHuman Rights Commission, 25th November 2014

Monday, 24 November 2014

Pozible campaign to complete 'The Talented Mr Digby'

The Talented Mr Digby is a feature documentary about three friends with an intellectual disability on a quest to become independent.
Digby Webster is a 27-year-old talented artist who dreams of one day moving out of home. His friend Tom Elenor fantasizes about fame and stardom, and award-winning actress Tracie Sammut now wants to teach other people with a disability and put a stop to industry stereotyping and typecasting with disability.
The producers have launched a Pozible campaign (online fundraising) to complete the project, which is now in post-production.  You can pledge now through the Project's Pozible Campaign Page, if you would like to support it.

'In Our Care': 4 Corners, tonight

Tonight, Four Corners will broadcast an investigation into the abuse of people with disability. The program highlights how a major institution failed to listen to the complaints of whistleblowers.

 'In Our Care' - Four Corners 
Monday 24 November, 8.30pm on ABC (TV) 1

Replayed on Tuesday 25th November at 11.00am and 11.35pm
It can also be seen on ABC News 24 on Saturday at 8.00pm, ABC iview and at

Friday, 21 November 2014

Weekend reading and viewing: 22nd -23rd November 2014

Finding Joy Each Day ~ Each Step ~ Each Dance
The Happy Soul Project, 7th February, 2013
... but we got caught up in a group of people- From what seemed like out of nowhere, a group of 20+ adults with Down syndrome filled the park...All of a sudden that park & that moment was where Craig and I needed to be...

The band started to play, I saw a few look at each other & wink with delight & then dancing, beautiful dancing right in the park with nothing but utter joy on their faces...I was frozen in time for a few moments- Just watching it all, trying to get close, talking to a few about Pip, hoping for an invite to dance with them...

Growing up with a sibling with Down syndrome
Sipping Lemonade, 20th November 2014
... when Kate was first born with Down syndrome, I wasn’t sure what our family would look like or how it would continue to grow. Kate had a big brother — but would we have more children? If we could, should we? I had always dreamed of having a big family — would a Down syndrome diagnosis affect that? All families have many unique, personal reasons for their family size, would having a child with special needs affect ours? What would those sibling relationships look like? ...

Janet Carr: They used to say ‘they’re never likely to walk or talk’
Saba Salman, The Guardian (UK), 19th November 2014
Pioneering psychologist on her 50-year study of people with Down’s syndrome that became a lifelong commitment to changing attitudes ...

How perfect baby Gammy opened my eyes to choice
Claire Harvey, The Sunday Telegraph, 16th November 2014
... Seeing Gammy ...  an Australian child born to a surrogate in Thailand _ being lavished with love by his birth mother made me grasp, for the first time in a really visceral way, why the parents of children with Down Syndrome say their kids are a gift. It is embarrassing to admit this, but the footage of Gammy was the first time I’d really understood the obvious truth: that Down Syndrome children are just children ... I do know this: it’s too late to turn back this tide of choice. The information is there, and it’s not going away. Many of our ancient burdens have been lifted. Somehow, we have to learn how to deal with new ones.

Orange Juice Flavour Sky, 14th November 2014
... Sure enough, the figure walking up the path at the side of a busy road, was Emily. Alone. All alone. Emily alone! There’s nobody with her! Hello!!!

In that moment my world seemed to freeze. My mouth went dry. My heart began to race. We were already 50 yards passed… a hundred. I couldn’t just stop, we were on a busy road with traffic right behind ...

Hand Me Downs, 5th October 2014
... Sometimes I forget, and that makes it even harder when someone reminds me in a not so kind way….Like the cashier that gave me sad eyes and spit poison in a whisper,

“I bet you wish you had known before he came out. You know they have a test for that now…”

Shock, horror, hurt and fury coursed through my body. I considered jerking her over the register and beating her senseless. I looked her up and down, I could take her ...

Stella Young, The Drum (ABC), 14th November 2014
... as someone who has had more than their fair share of contact with the medical profession over the years, I can assure you that this experience was not an isolated one for me.

And so when people ask me why I am opposed to legalising assisted suicide, this is what I tell them: The medical industrial complex has an inaccurate, but incredibly powerful, view on my life. Disability is often framed, in medical terms, as the ultimate disaster and certainly as a deficit ...

... and a little bit of Rudely Interrupted, Close my Eyes, from 2010:

Latest additions to 'events' pages

Down Syndrome NSW events

Embracing Succes - a Teacher's Toolkit
Down Syndrome NSW education conference -  an essential training event for any educator working with a student with Down syndrome. registration available for one or two days. Early bird registration closes 30th January 2014.
Thursday 26th  and Friday 27th March 2015 - Sydney

Tee Up! 2015
Fund raising golf day to support the work of Down Syndrome NSW.
Friday 27th February 2015 - Coast Golf Club, Little Bay

Other 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.

Bicycle Riding Clinic
Specialist sessions for people with a disability - offered by Strathfield Council.
Saturdays 22nd and 29th November, 6th December 2014 - Strathfield

Boundless Spirit
Photographic exhibition of Merry Makers Australia Gala performance at the Sydney Opera House in 2014, for International Day of People with Disability.
27th November - 10th December 2014 - Sydney opera House (Western Boardwalk)

People with Disability Australia  President Craig Wallace and Board members will be online to join the conversation and you can also have your say on Twitter #ndisscorecard. Your input will form the People’s submission for the NDIS Scorecard Project and will be presented by PWDA to the Citizens' Jury being held inSydney in February 2015.
Saturday 29th November 2014 - online

Each year Access All Areas Film Festival hosts FREE accessible screenings in cinemas in Sydney and Western Sydney. This year's Cinema Tour feature is Tracks. the Festival also includes a Community Tour program of family-friendly Australian short films.
Cinema Tour Dates
Monday 1 December - Parramatta
Wednesday 3 December - Sydney
Thursday 4 December - Campbelltown                       
Friday 5 December - Casula

T21 Ryder’s Foundation Memorial Golf Day
T21 Ryder’s Foundation was established by Ryder Manulat's parents ... 'to ensure that he not only left his footprints on this world but to raise funds for families and carers with children up to five years of age with Down syndrome' ... in the Hunter region. Proceeds of the day will go to DS NSW Hunter Region.
Monday 15th December 2014 - Rothbury

Thursday, 20 November 2014

Why 'Sam's Top Secret Journal'?

Sean Adelman posted this background information on his 'Sam's Top Secret Journal' series of
books a few days ago on the books' Facbook page.  He has generously given permission for us to repost it here, and is donating copies of the books to our library.  Jo will let us know when they are available for borrowing by members:

Thanks to everyone that has supported Sam. I hope that I am making a difference in my small way. I've been asked a lot about "why" I started the Sam Series.

There are so many reasons, but first and for most would be to create hope and expectations for parents, siblings and society. Dev and Sue went to their first NDSC convention a few years ago and heard Karen Gaffney state:  
“I am not the exception, I am the possibility”.  
I think that is the same reason we wanted to have a literary figure for others to have in mind. 
When you are a new parent you believe everything is possible. Your child will grow up to understand physics like Hawking, sing like Barbara, play in the NFL like Elway, create like Oprah, be a doctor/lawyer/teacher … As the child grows into their own person those hopes and dreams get modified and the parent (hopefully) starts to consider realistic dreams for that child: college, family, a job…happiness… When you get an early diagnosis it seems all of those hopes and dreams are sucked into a vortex of doom. The dreams turn to worries. Our hope is to help keep those dreams alive for parents, kids and society.

If we can help society change its viewpoint from measuring things someone can not do, to valuing ABILITY and appreciating differences each of us brings, than we will be happy. 
The stories in the “Sam” series are fictional, but every thing that Sam does in the books is something our daughter Dev has done in real life. Does that mean every child with Down syndrome will be able to do the things that Sam does, of course not, every child is different. But if you never knew about Anne Frank, Einstein, MLK, Mare Curie the list goes on and on, how limited our dreams would be. The stories written about these larger than life people expand our dreams and hopes for our own lives. Kind of lofty goals, but that is the reason for writing the books.
Sean Adelman, 14th November 2014 

Thank you Sean! 

Members' library

The Down Syndrome NSW library catalogue is available to view here.  

Wednesday, 19 November 2014

Casting call - actor with Down syndrome required

All enquiries directly to McGregor Casting

Tee UP! for Down Syndrome 2015

It's time to dust off the clubs and register for Tee UP! 2015

Last year Tee UP! for Down Syndrome raised over $25,000 to help Down Syndrome NSW support children with Down syndrome, from birth to six year of age, and their families.

In 2015, all money raised from Tee UP! will be used fund:
  • New parents Welcome Pack - The funds raised from one Player's Registration will fund one New Parents Welcome Pack, an invaluable resource for families welcoming a baby with Down syndrome into their lives. 
  • New family visits - Each Hole Sponsorship package will provide Down Syndrome NSW with funds to support face to face visits to new families, either at home or in the hospital. A friendly face, experience and reliable information are vital to helping new families adjust to parenthood with a new baby. 
  • Hospital Education - Funds raised on the day through raffles, games and contests will go to our hospital education program. This program ensures hospitals have the expert information, resources and the knowledge they require to support new families.
We have teamed up again with The Coast Golf Club to bring you another amazing day on the green.

Friday 27th February 2015
The Coast Golf Club
Little Bay NSW

To make it easier, sponsors and players can register online now. You can also download a hard copy of the registration form.

For any further information please feel free to call Ben or Scott on 9841 4444.

Movember at 3DN

Movember, the month formerly known as November, is a moustache growing charity event held during November each year, that raises funds and awareness for men's health.

3DN is the Department of Developmental Disability Neuropsychiatry (3DN) at the University of NSW, in Sydney ... 
We champion the right of people with an intellectual or developmental disability to the same level of health and mental health care as the rest of the population. We promote a standard of excellence in clinical practice, research, workforce development, education and policy in the field of intellectual and developmental disability mental health. (Department of Developmental Disability Neuropsychiatry)

Please support us as we turn ugly for a good cause. Compared to the general population, men with intellectual or developmental disabilities experience:
  • significant health inequality
  • premature death and high burden of disease
  • very high rates of mental health problems.
Team 3DN want to raise awareness of these issues. If you would like to make a donation, please go to our Movember team page.

In the 2014 National Disability Awards, 3DN is one of three finalists in the  Improving Health and Wellbeing Outcomes Award:
Over the past five years Associate Professor Trollor and his team have developed 3DN into a centre of expertise, capacity development, research and advocacy in intellectual disability mental health. Associate Professor Trollor and his team embrace a person-centred approach to mental health care for people with an intellectual disability ... (International Day of People with Disability Australia)

Tuesday, 18 November 2014

PWDA 'Citizen Jury' on the National Disability Insurance Scheme

 People with Disability Australia is hosting a 'Citizens' Jury' event on social media. This information is from the PWDA Facebook page:
Saturday, November 29 at 12:00pm - 4:00pm 
It’s time for people with disability to have OUR say on the NDIS (National Disability Insurance Scheme)! PWDA members, and the disability community are invited to tell us what YOU think at the online forum.  
PWDA President Craig Wallace and Board members will be online to join the conversation and you can also have your say on Twitter #ndisscorecard 
Your input will form the People’s submission for the NDIS Scorecard Project and will be presented by PWDA to the Citizens' Jury being held in Sydney in February 2015.

Show Off Arts Festival - call for volunteers

We need some volunteers to help with the event on the day. If you, or any of your friends or family, are interested please email:

Show Off Arts Festival showcases people with Down syndrome involved in all aspects of the arts. The all-day extravaganza includes live performance, exhibitions and workshops across dance, drama, music, film and fine arts.

This event is for families and community members to meet, connect and be inspired.

10am - 3pm Sunday 30 November 2014
Riverside Theatres Parramatta

Official opening at 10.30 followed by live performance from 11am.

Workshops during the day will include drama, drumming and dance. Don't miss out, book now to attend these workshops, online bookings here

Show Off is part of Riverside Theatre's Beyond the Square STARE FEST - an inclusive arts festival that will make you look again.

Monday, 17 November 2014

People with Down syndrome in the media

Forgetful hen a prompt for author
Shannon Hampton, Albany Advertiser, 13th November 2014
Local author Naomi Lake will launch her first children’s book this weekend. The story follows a forgetful hen named Harmony who loses her eggs and her journey to find them before they hatch. Lake, 24, who has Down syndrome, drew inspiration from the chickens in her backyard ...

Man with Down syndrome empowers others using technology
Microsoft, The Firehose, 13th november 2014
For Carlos De Saro technology is a tool that’s helped him open doors he never imagined possible. Now, he’s using his knowledge to help others with disabilities achieve their dreams ...

Brixham chef Mitch Tonks works with Down's Syndrome Association
Herald Express (UK), 13th November 2014
... "As chefs we don't understand disability as well as perhaps we should and that's probably the same for most people. The WorkFit programme was a real bridge to all of that for us; really making it very easy, so that we could actually make it happen without any duress on our business ...

Cafe serves opportunity with coffee
Claire Tyrrell, The West Australian, 7th November 2014
... "I have learnt a lot here. I talk to the customers and serve a lot of food and coffee," Ms Childs said. Through Uniting Care West's Community Options program, The Warehouse Cafe helps train 20 people with disabilities ...

Nicholas Popowich talks about life with Down syndrome
CBC News Saskathewan, 1st November 2014
Nicholas Popowich is an ambitious 24-year-old. He spends half of his working week studying theatre arts at the University of Regina, and the other half working at a SaskTel kiosk in a Regina mall ...

HSC 2014: Two determined girls on a road less travelled
Amy McNeilage, Sydney Morning Herald, 27th October 2014

... "Success at the end of school is not just about a number and it means something different for everyone," Jenny Fowler, the girls' principal at Our Lady of the Sacred Heart College at Kensington, said. "Marnie and Lucy are leaving school happy, confident and equipped, which is a great achievement." ...

Louisville man serves as advocate for those with Down syndrome
Kimberli Turner, Colorado Home Town Weekly News, 22nd October 2014
... "I enjoy being an advocate, because I want to have fun, do new things, do my best and inspire other people," said Long, who is an NDSS ambassador and . "I thought it would be fun for family, friends and former classmates and teachers to see what I look like since graduating from high school in 2012. I look much older now. The video helps people everywhere understand that people with Down syndrome are changing the world." ...

Port Alberni teen makes a special blanket for Cpl. Nathan Cirillo’s son
Amy Judd, Global News, 27th October 2014
Seventeen-year-old Angel Magnussen is hard at work on another Hugginz blanket. She lives with Down syndrome and devotes her life to helping others. She spends hours making blankets for sick children, among other things. But when Magnussen heard about the shooting in Ottawa last week she learned Cpl. Nathan Cirillo had a six-year-old son, Marcus. So Magnussen knew she had to start making a special blanket ...

Photographic exhibition at Sydney Opera House for IDPWD

Friday, 14 November 2014

Weekend reading and viewing: 15th - 16th November 2014

Down Syndrome Australia has some brilliant photos and results on its Facebook page from the 7th World Down Syndrome Swimming Championship in Mexico, that wraps up 15th November. Send one last Herogram, via Down Syndrome Swimming Australia.

It’s not the 60s anymore…it’s time to update the advice given to parents about Down syndrome
Leticia Keighley, Embracing Wade, 13th November 2014
... It’s not ok to tell parents that their child will never walk, talk or learn anything. Mainly because we know it is not true for the vast majority of people with Down syndrome, but also because it’s not ok to set parents on this path with dangerously low expectations of what their kids are capable of. No one can guarantee any child’s future but they have a much better shot at a bright one if people invest in and nurture their talents instead of expecting absolutely nothing from them from the day they are born ...

Thinking about College - We can do this
David Perry, How Did We Get Into This Mess? 11th November 2014
I am a college professor. We have a college savings fund for my daughter, principally funded by parents so far, though we're beginning to be able to contribute too. We do not have a college savings fund for my son, because he has Down syndrome, and we never thought that college was a reasonable option. We were wrong ...

Seeing the light: One mother’s story of raising a child with Down syndrome
Melinda Carstensen, Fox News, 6th November 2014
... The biggest lesson LeVeque has learned from her son is to accept others for who they are— and to not try to change them, rework them, or fix them ...

Sam & Mattie's Teen Zombie Movie + Making-Of Documentary!
Two young men with Down syndrome are planning to make a movie, and are using social media to organise funding and support - they have passed their minimum fundraising totla, but you can still pledge support over the next five days.

Opal Card - pensioner concession cards now available

Transport for NSW has recently released the Opal Card for pensioners, including those with a Disability Support Pension. Other concession card holders can apply 'later'. 
Many people with Down syndrome and other intellectual disabilities use public transport regularly. Not having to handle money for fares for every trip, and not having to ensure they have the 'right' money will be welcome.

The Opal card is being rolled out across public transport in Sydney, the Blue Mountains, Central Coast, Hunter, Illawarra and Southern Highlands. The Opal card can currently be used on ferries, trains, and many buses - check online for routes that are 'Opal enabled' so far, and for timelines for the full roll-out.

You can apply for your card online, by phone, or at an Opal card retailer. When you apply online, your eligibility is checked online as part of the process (via your pension/concession card number), very quickly. The card is then mailed to you within a few days, you can activate it online and begin to use it on public transport displaying the Opal logo.

There are a number of options for ordering, initial payment and 'topping up', so set aside some time (it took us about 20 minutes online, and the card arrived in three days) to go through the process and decide how you want to manage it.

Thursday, 13 November 2014

Chris Bunton - on 'The Nationals', for IDPWD

In the lead up to International Day of People with Disability on 3rd December the annual NSW campaign 'Don't DIS myABILITY' is gearing up. This week, their blog is introducing in more depth, the 2014 Ambassadors who were announced last week.  Here is Christopher Bunton's post about his recent participation in gymnastics at the Special Olympic National Games in Melbourne - just one of the many strings to Chris's bow:
... At the end of October I traveled to Melbourne with the NSW team to compete at the Special Olympics National Games in gymnastics. 
Of course it was a lot of hard work in the gym to get there. I started gymnastics at the age of six, and had my first competition when I was nine. Since then I have continued training and competing at regional, state, national and even world games ... 
 ... read or listen to all of Chris's article, and see some excellent photos here.
Chris is an accomplished young man who has often featured in our blog, you can read about some of his other achievements here.

2014 National Disability Awards - finalists

The finalists for the 2014 National Disability Awards have been announced - they are listed here, by category, with brief information about why they were nominated. The judging criteria are here

The 2014 National Disability Awards will take place at Parliament House in Canberra on Tuesday 25 November 2014.

The National Disability Awards are an International Day of People with Disability (Australia) activity.

Wednesday, 12 November 2014

Bike riding clinic - Strathfield

Learning to ride a bike can be challenging for both children and adults with Down syndrome, but the benefits are clear from both research and families' reports - local clinics are becoming more available, like this welcome new initiative from Strathfield Council:

The bike riding clinic is being offered by Strathfield Council - but you do not have to live in the Strathfield LGA to participate. For further enquiries please call Strathfield Council on 9748 9999

Congratulations Genevieve Clay-Smith, 2015 NSW Young Australian of the Year

How good to hear that the very talented and innovative Genevieve Clay-Smith has been selected as NSW Young Australia of the Year 2015.  Genevieve has worked with Down Syndrome NSW, and has been instrumental is promoting the careers of many young people with Down syndrome in the film industry. 
Genevieve directed Let the Journey Begin exploring the lives of three individuals and their families as they progress through the Independent Living Support Initiative (ILSI) program over the course of nine months. (ILSI is an innovative program designed and developed by Down Syndrome NSW, in conjunction with service providers and NSW Ageing Disability and Home Care, to help people living with a disability live a more independent life.)

Genevieve directed Be My Brother the winner of Tropfest 2009 (in which Gerard O'Dwyer also won Best Actor). She founded Bus Stop Films, and has included many people with Down syndrome, and other disabilities on both sides of the camera, winning awards and honours along the way. The Interviewer is currently on the international film festival circuit, and continues to win both critical and popular acclaim, and awards. 
... Genevieve Clay-Smith has been named the 2015 NSW Young Australian of the Year. The filmmaker and social entrepreneur, 26, is the co-founder of not-for-profit organisation Bus Stop Films, which teaches members of diverse and marginalised communities how to create short films that voice their experiences ... She is currently working with 12 of her intellectually disabled students on a film called Heartbreak and Beauty, in which they share their experiences of love and loss through poetry, dance and visual metaphor 
Ms Clay-Smith is also the co-founder of Taste Creative, which provides students with paid employment on film sets ... Genevieve Clay-Smith NSW Young Australian of the Year 2015Helen Gregory, Newcastle Herald, 10th November 2014

The writer/director (Genevieve Clay-Smith) has been nominated in the annual Australian Financial Review and Westpac awards for her contribution to creating inclusion in the film industry ... Genevieve Clay-Smith has been recognised in the Young Leaders category for her efforts in creating inclusion within the film industry.
The gifted writer/director has won numerous accolades for her empathetic film work including Tropfest’s top prize and in 2012, Clay-Smith co-founded Bus Stop Films, a pioneering not-for-profit organisation dedicated to giving people with a disability the opportunity to learn the ropes when it came to professional filmmaking ... Genevieve Clay-Smith Named One Of The 100 Women Of Influence For 2014,
Film INK

Tuesday, 11 November 2014

Photos and medal tally - direct from Mexico

The 7th World Down Syndrome Swimming Championships are well under way in Mexico, as noted yesterday.  The very first gold medal of the meet went to Stephen Donovan from Western Australia - Down Syndrome Australia's Facebook page is proving an excellent place to keep up with Team Australia's performances and medal tally as they happen, direct from supporters by the pool.

Congratulations Team Australia on your performances so far, good luck for the rest of the week!

Embracing Success: Down Syndrome NSW Education Conference 2015

Download the flyer and registration form here - forward it to your child's school now (before the end of the school year), early bird rates currently apply until 30th January 2015

Monday, 10 November 2014

News and opinion on employment matters

Economic Security and Employment
People with Disability (Australia) E-Bulletin, November 2014
Wage Justice Campaign - PWDA continues to work on wage justice for employees with disability in Australian Disability Enterprises (ADEs), previously known as ‘sheltered workshops’ ...

Cafe serves opportunity with coffee
Claire Tyrrell, The West Australian, 7th November 2013
... "I have learnt a lot here. I talk to the customers and serve a lot of food and coffee," Ms Childs said.
Through Uniting Care West's Community Options program, The Warehouse Cafe helps train 20 people with disabilities ...

Vermont closed workshops for people with disabilities; what happened next?
Halle Stockton, PublicSource, 28th September 2014
... The sheltered workshops that are still prevalent in Pennsylvania were shut down in Vermont more than a decade ago. And now, the employment rate of people with developmental disabilities in the New England state is twice the national average ...

Move to shift disabled workers from 'sheltered workshops' to community jobs stirs debate
Mary Spicuzza, Wisconsin State Journal, 28th September 2014
For decades, facilities where people with disabilities do basic jobs while separated from non-disabled workers were praised for providing those with developmental disabilities opportunities to learn skills and build friendships.

But in recent years, increasing numbers of people, including disability rights advocates and federal officials, have raised concerns that many of these nonprofit training programs, known as “sheltered workshops,” keep disabled workers trapped in low-wage jobs — often making $2 to $3 an hour — and fail to help them move on to higher-paying opportunities in the private or public sectors ...

New York Times Wins Disability Reporting Award
Arizona State University, 13th October 2014
A New York Times story about a group of men with intellectual disabilities who worked in servitude for decades has won top honors in the 2014 Katherine Schneider Journalism Award for Excellence in Reporting on Disability ...

7th World Down Syndrome Swimming Championships this week - send a herogram now

The swimmers are in Mexico, acclimatised, and ready to compete all this week in the 7th World Down Syndrome Swimming Championships - send a herogram to Team Australia via Down Syndrome Swimming Australia, here.
Messages will be collected and read out to the swimmers by the support team every day while in Mexico. Herograms are a great way to encourage the swimmers! They love receiving messages from home during the competition or from people they know. Spread the word to friends, supporters and people in your individual networks so others can send Herograms too. 

Friday, 7 November 2014

Weekend reading and viewing 8th - 9th November 2014

The Cradle Will Fall
Sergey Chernov Transitions Online, 4 November 2014
In Russia, parents of babies with developmental disabilities face pressure from both society and the medical establishment to abandon their children at birth.

DREAMS to Reality
D.R.E.A.M. Partnership, 27th August 2014

The Hunterdon County Democrat, 29th October 2014
Michelle Purri of Clinton Township is on a roll. Earlier this month the 22-year-old resident of Hunterdon County received the Melissa Riggio Voices Award from the National Down Syndrome Society and the Riggio family, founders of Barnes & Noble. The award is given annually to someone with Down syndrome who the family deems best exemplifies the spirit and outlook on life of Melissa Riggio, who died in 2008.
Purri accepted the award at a luncheon in New York City where she spoke before 250 attendees, telling them, "If you dream it and believe in yourself, all things are possible." ...

BRIGHT SIDE: Megan Sutton opens up world of dance for kids with special needs
Simon Walker, Newcastle Herald, 3rd November 2014
Fired by personal loss and the desire to give everyone a fair go, dance teacher and choreographer Megan Sutton has set up a dance school devoted entirely to kids with special needs ...

The beautiful dancers with Down syndrome
Australian Women's Weekly, November 2014
Short excerpt from a much longer article in the print and iPad editions.

British Pychological Society, 31st October 2014
... Dr Carr’s unique study has been generating findings of importance to the families and care services as well as to the scientific community. There is unlikely to be any comparable study of this special group of people from a psychological perspective. Her research was initiated by the Psychiatric Genetics Research Unit of the Medical Research Council, based in the early 1960s, at the London Institute of Psychiatry. It’s aim was to establish the educational requirements of the local population of children with Down’s syndrome ...

I Won't Pretend That Disability Simulation Works
Emily Ladau, Huffington Post (The Blog), 5th November 2014
Activities meant to simulate the experience of disability are so often lauded as moving, powerful, eye-opening experiences. With just a few hours in a wheelchair, wearing earplugs, or wearing a blindfold, people supposedly gain a deeper understanding of what life with a disability truly entails. I, for one, don't buy it ...

Parents with learning difficulties awarded £12,000 as judge rules Leicester City Council breached their ‘basic human rights’ by taking their baby away
PA_Warzynski, Leicester Mercury, 29th October 2014
A couple with learning difficulties who were separated from their baby daughter for more than a year have won £12,000 in compensation after a judge ruled Leicester City Council had violated their basic human rights ...

Team Inverell - Scrapheap Adventure Ride 2014

Team Inverell's float in a local parade celebrated their enthusiastic and 
highly successful participation in this year's Scrapheap Adventure Ride
in September.  They are already preparing for next year's adventure.  
Thank you for allowing us to share your Facebook photos, and thank you Inverell.

Don't DIS my ABILITY 2014 ambassadors and posters

From the Don’t DIS my ABILITY website, announcements for the 2014 campaign:
Ambassadors support and strengthen the Don’t DIS my ABILITY campaign by serving as its voice. Ambassadors share their personal stories and campaign messages, ultimately raising awareness of the abilities and achievements of people with disability. 
The 2014 ambassadors are a diverse group of people from across NSW who represent a range of backgrounds, ages and disabilities ...
Our congratulations to all the 2014 ambassadors, who you can read about here - especially to Christopher Bunton. What a wonderful, and hard working year you are having:
Christopher lives by his personal mottos: don’t give up, just have a go and reach your personal best. In 2010 Chris, who has Down Syndrome, achieved great results in the Higher School Certificate and has gone on to complete a Certificate III in Sports and Recreation. Twenty one year old Chris gives it his all and has represented Australia in the Special Olympics in gymnastics. He also loves to perform with Accessible Arts. Chris lives in St Clair with his family.  

Posters released this year's Don't DIS myAbility campaign:

'Include or exclude? It's your choice' message detail:

Download a large-format (A2) .pdf version here
- where you will be able to read the text easily.

Thursday, 6 November 2014

WANTED! People with disability living independently - interviews for research study

An important study from the University of NSW (Built Environment) is looking for people to interview:
$50 for a one-hour interview
In the next few years, reforms in the disability sector in Australia will allow many more people with disability to move out of their parents’ homes or shared supported accommodation, and live independently. Finding and sustaining housing that is accessible and affordable will be one of the key challenges for people wanting to move to live independently. 
The Australian Housing and Urban Research Institute (AHURI) is currently undertaking research on housing and independent living for people with disability. We are interested in interviewing people who have already made such a move and can tell us about their experiences ... see more here

New resources, publications

Durham author gets honest about parenting and Down syndrome
Corbie Hills, News-Observer (North Carolina), 3rd November 2014
Paul Austin’s daughter, Sarah, is thoughtful and helpful, though she goes about it her own way ...

Read more here:
Paul Austin’s daughter, Sarah, is thoughtful and helpful, though she goes about it her own way ... Her Dad's second book is an unflinching look at his own parenting experience. In the book, he’s not shy to admit his faults and failures. Over 278 pages, Paul documents the rocky path from the shocked new dad he was in 1987 – one who couldn’t see through his daughter’s Down syndrome diagnosis – to the parent he is in 2014, who simply sees a daughter, no qualifier needed ...

Not All History is Remembered Equally: Why You Must See the Film 'Menschen'
Kari Wagner-Peck, A Typical Son, 31st October 2014
This film is not (yet) on general release, but it is on the film festival circuit internationally - worth watching out for, if you are interested in the history of discrimination. Several video excerpts and lots of information are available on the film's website (links at the end of the post).

Royal Commission information and links
Children with Disability Australia provides links to information about all aspects of the work of the current Royal Commission into Institutional Responses to Child Sexual Abuse, on its website, here.

Members' library
The Down Syndrome NSW library catalogue is available to view here.  

Wednesday, 5 November 2014

Ph D scholarship on offer at UNSW: research on mental health in people with intellectual disability

You might know someone who would be interested in this very valuable academic research opportunity that will benefit people with an intellectual disability, at the University of NSW:
The Department of Developmental Disability Neuropsychiatry (3DN) within the School of Psychiatry, UNSW Australia, is offering a three-year full-time PhD stipend to one or more highly motivated student/s to work with Associate Professor Julian Trollor on a project that will improve access to, and quality of mental health services for people with ID. The PhD is to be undertaken as part of a broad program of research under the ‘Improving Mental Health Outcomes for People with an Intellectual Disability’ National Health and Medical Research Council Partnerships for Better Health Project.
Applications close 30th November 2014. All details are online here.

Stare Fest: Riverside Theatres, Parramatta

STARE FEST brochure - for information on all events

All shapes. All sizes. All types. All abilities. STARE FEST is an arts event for everyone.

STARE FEST is produced by Riverside Theatres’ Beyond the Square, an inclusive creative program uniting arts and disability organisations together to present an exciting two week program of theatre, film, dance, music and art across Parramatta.

Get yourself involved in one of the many free workshops, attend a show, buy some original artwork, see a film but most of all come and STARE!

Down Syndrome NSW's Show Off! Arts Festival is a STARE FEST event - 30th November 2014

Note: the Stare Fest banner artwork is by Digby Webster