Address details

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

Thursday, 31 December 2015

Happy New Year!

Best wishes to all our members and supporters for the New Year

Greg Simmons
President, Down Syndrome NSW

Thursday, 24 December 2015

Seasons greetings ...

The Board, Management and staff of Down Syndrome NSW would like to extend 
to you our seasons greetings and wishes for a prosperous New Year.

Please note our office will be closed from Friday 18th December 2015
and will reopen on Tuesday 12th January 2016.

New baby referrals will be responded to with 24 hours Monday - Friday.

Thank you for your support this year and we look forward
to our continued association in 2016.

Regular blog posts will resume on  4th January 2016

People with Down syndrome

The Media - And What It Is Like to Be Someone With a Learning Disability in It
Sarah Gordy, Huffington Post (UK), 8th December 2015
I am an actress and I happen to have a learning disability. I had a young employee in a supermarket come up to me the other day. He has a learning disability. He said; "Sarah you were brilliant yesterday, but you are not doing us any favours, your characters are always helpless and sad. Please play a character with a job, a life and giggles."

What could I say; I don't rule the world. But I agree. I think the media needs to change. I think it needs to do more to include people with a learning disability. I think it needs to stop seeing the disability and begin to see people ...
Young Australian artist's New York triumph
Sheila Pham, Australia Plus, 7th December 2015
We first met young Australian artist Josie Webster when she was hoping to travel to New York for the opening of an international exhibition featuring her work. Thanks to crowdfunding she's been to the Big Apple and had the time of her life ...

Intellectual disability doesn’t stop Westmeadows man landing job with Victoria Police
Natalie Savino, North West Leader (Melbourne), 12th December 2015
The past 10 months have been a dream come true for Calvin Lui, who hasn’t let an intellectual disability get in the way of landing an important job with Victoria Police. Now his recruitment is opening doors for others to do the same ...
Daytime, 7th December 2015
Jamie Brewer is an American actress. She is best known for her roles in the FX horror anthology television series American Horror Story. In its first season, American Horror Story: Murder House, she portrayed Adelaide “Addie” Langdon, the daughter of the main antagonist, Constance Langdon; in the third season, American Horror Story: Coven, she portrayed Nan, an enigmatic and clairvoyant witch, and in American Horror Story: Freak Show, she portrayed Chester Creb’s vision of his doll, Marjorie ...

Down's Syndrome martial artist Jacob Phelps earns black belt
Leicester Mercury, 22nd December 2015
Fifteen years after taking up ju-jitsu, Jacob Phelps, who has Down's Syndrome, has earned his black belt ...

Wednesday, 23 December 2015

News and opinion from the broader disability community

Local Pathways to Disability-Inclusive Governance in Indonesia
Natalia Warat, Asia Foundation, 16th December 2015
“Nothing About Us Without Us” has become a familiar slogan used by the international disability movement and relies on the principle of full participation for all. However, in Indonesia, where people with disabilities (PWDs) still face enormous barriers, we’re just recently starting to see this slogan being put into practice.
Laurie Levy, Huffington Post Australia, 16th December 2015
Demanding. Annoying. Angry. Unrealistic. Unreasonable. Every teacher, principal, and school district administrator knows *that* parent. In special education, there are much greater numbers of *that* parent, and I'm sure school systems feel irritated and challenged by the threats of law suits and seemingly endless fights over Individualized Education Plan (IEP) goals. But do they realize their role in creating *that* parent? ...

Featured Philosop-her: Elizabeth Barnes
Meena Krishnamurthy, Philosop-her, 15th May 2015
... I have sat in philosophy seminars where it was asserted that I should be left to die on a desert island if the choice was between saving me and saving an arbitrary non-disabled person. I have been told it would be wrong for me to have my biological children because of my disability. I have been told that, while it isn’t bad for me to exist, it would’ve been better if my mother could’ve had a non-disabled child instead. I’ve even been told that it would’ve been better, had she known, for my mother to have an abortion and try again in hopes of conceiving a non-disabled child. I have been told that it is obvious that my life is less valuable when compared to the lives of arbitrary non-disabled people. And these things weren’t said as the conclusions of careful, extended argument. They were casual assertions. They were the kind of thing you skip over without pause because it’s the uncontroversial part of your talk ...

Government to pay disabled workers 70% of back wages as class action ends
Helen Davidson, The Guardian, 18th December 2015
A long-running legal battle over a disability employment scheme which paid some people as little as $1 an hour has come to an end after the federal government agreed to back pay 70% of the wages owed ...

News and commentary on the NDIS (42)

Our last compilation of news, commentary and opinion on the NDIS for 2015. In 2016, expect much more, as the full rollout begins from June:

Disability Loop eNews #11, 23rd December 2015

NDIS December 2015 eNewsletter

2016 To Do List: Making the NDIS the best it can be
Every Australian Counts, 21st December 2015
2015 has been a huge year for the NDIS. A new report looks at the year in review and what needs to be done in 2016.

The NDIS will transform the lives of people with disability, giving them the power to choose the supports they need to live the life they want. It will also transform communities, helping people with disability realise their dreams of jobs, independent living and a place in their local community ...

Every Australian Counts, 18th December 2015
The latest report on the progress of the NDIS roll out is full of good news: it shows that the number of people with individual plans is steadily rising, the cost of the scheme remains within budget and participants are generally happy with the experience ...

People with disability organisations critical to an NDIS future
Australian Federation of Disability Organisations, 3rd December 2015
Disability Australia welcomes the announcement today by the Australian Labor Party on International Day of People with Disability to re-fund people with disability organisations that represent over 200,000 people with disability across Australia.

“We welcome today’s announcement and call for bi-partisan support for long-term stability and funding for people with disability organisations that were critical in achieving the NDIS”, said Matthew Wright, CEO of the Australian Federation of Disability Organisations, and spokesperson for Disability Australia ...

Open letter to SMH - 'Primary disability sector supports NDIS, point blank'
Disability Loop, 7th december 2015
Disability advocate Tricia Malowney wrote an open letter to Rachel Browne, journalist at the Sydney Morning Herald - in response to a December 7 article called 'Disability sector has grave concerns about NDIS roll out' - explaining that people with disability and their families are the primary part of the ‘disability sector’ ...

Sorry, not my department – why the NDIS and health systems need to collaborate
Libby Callaway and Mark Brown, The Conversation, 8th December 2015
... Our research, released today, shows people with the highest physical and medical support needs risk being shunted between the heath and disability sectors, and missing out on timely, well-coordinated care.

To date, people with significant disability have reported some of the most unmet needs in the sector. They often rely on high levels of family support, spend prolonged periods in acute hospital beds, or enter residential aged care facilities because there are no other options available to them ...

8 NDIS Lessons from 2015
Roland Naufal, Disability Services Consulting, 21st December 2015
... It has been a year when we have started to see the fundamental change a market driven disability system will bring. Expect the change next year to be much bigger and much more challenging.

Tuesday, 22 December 2015

Love My Shape: book release

You might recall that Nerida Lamprill presented a workshop for Down Syndrome NSW in October. Her book has now been released:

Adelaide fashion designer Nerida Lamprill releases beauty book for women with disabilities
Nicole Pope Adelaide Advertiser, 7th December 2015
An Adelaide woman is changing the face of beauty for those living with disabilities.

Author and award-winning fashion designer Nerida Lamprill, 49, has released a book designed to empower, build acceptance and break down stereotypes through personal presentation.

Love My Shape, the first book of its kind, provides tips on how to dress for different body shapes modelled on young South Australian women with disabilities ...

Latest additions to events listing

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:

Get More Skills Workshops
My Choice Matters - learn and practice new skills to get more Choice, Voice and Control in your life. Think and plan, practice and discuss the changes to the disability support system and what you can do now. Fully accessible workshops  for people with a disability and their families/carers. 
Register online, or call 1800 144 653
Wednesday 10 February 2016 - Blacktown
Monday 8 February 2016 - Hornsby 

Social Advocacy
Family Advocacy - three day workshop presented by John Armstrong and Bob Lee, will provide current advocates, both formal and informal, families and allies, advocacy service managers, CEOs, board members and policy makers with the deeper considerations needed when undertaking social advocacy. 
Register online, or call 9869 0866
24th, 25th, 26th February 2016 - Sydney

Monday, 21 December 2015

L Plates

A Down Syndrome NSW member's story, from Margaret Taplin:

Michael Taplin, aged 24, has recently passed his Learner’s License and is very excited, while nervous, to learn to drive. Michael achieved this by attending Sydney Ultimo TAFE. The course is run for disabled adults twice a week for a 15 week period. He studied very hard over this time and practiced the questions consistently on the RTA website. He liked meeting new friends at TAFE from all over Sydney and he enjoyed finding his way to and from Ultimo.

Michael has held a position of Office Assistant in a recruitment firm in the city for the past 5 years. He works from 9 am to 12 pm 5 days each week and catches the train to and from work. He loves his job and has many friends at work. His office is at Darling Harbour and he is finding his way around the city often meeting his brother at Fitness First gym at Bond Street.

Michael is enjoying the new Up Club which has started at Cronulla and loves having the outings with his friends from the Shire.

Michael also plays tennis for Special Olympics and represented NSW in the 2014 National Competition winning a bronze medal in the Doubles. He also participates at Special Olympics at Golf so his Saturdays are very busy.

John and I are very proud of what Michael is achieving in his life, he is a good and loyal friend and has a cheeky personality.

Friday, 18 December 2015

Weekend reading and viewing: 19th - 20th December 2015

What No One Told Me When My Child With Down Syndrome Was Born
Sondra Meacham, The Mighty, 17th December 2015
She turned my world upside down four years ago. In December 2011, we were preparing for the birth of our second daughter ... I’m thankful for how much I have learned about what is important.

He is Joe. He is our son
No Label, No Limits, 8th December 2015
When Sarah asked me if I would consider writing something for the PSDS blog I knew straight away that I would say yes. I realised that I’d reached something of a milestone by coming through the trauma and stress of the early months and that I was not only ready to share our story but desperate to! I often wish I could go back in time and tell my pregnant self what I know now ...

Life Expectancy for Those With Intellectual Disability Used to be Nine Years. Today it is 50 and Beyond

Prof Mary McCarron, Trinity College Dublin, 11 December 2015
The ageing of people with an intellectual disability is a success story that was celebrated in the inaugural lecture delivered by Professor Mary McCarron, Dean of the Faculty of Health Sciences and Trinity College Dublin’s first Professor of Ageing with Disabilities, in Trinity Biomedical Sciences Institute last night.

“This is the first time in history we have ever had a population of people with an intellectual disability who have reached old age and this is something that we should celebrate. Life expectancy for those with Down syndrome in the 1930s was nine years. Today it is 50s, 60s, 70s and beyond,” says Professor McCarron ...
  • Professor Mary McCarron is Dean of Faculty of Health Sciences at Trinity College Dublin and an international expert in the field of ageing and intellectual disability, dementia and Down syndrome. She has been a champion for those with intellectual disability since she began her career as a nurse in the 1980s.
A lonely love
Heather Kirn Lanier, Star in Her Eye, 9th December 2015
... I said it slowly and clearly and sadly, and the sentence felt as weighty as a psalm: “It’s hard having a child that other people actively don’t want.”

There it was. My husband stopped what he was doing—scrubbing the stove? putting away silverware?—and turned to me. He opened his arms for a hug.I pressed my cheek into his fleece sweatshirt and stared at the wall. “I want her,” he said ...

What makes someone fit to parent?
Natalie Rose Corrigan, Daily Life, 17th December 2015
... In Australia, Rebecca*, who has a mild intellectual disability, was still pregnant with her first child when she was reported to child protective services. This may sound like a bizarre scenario, but it's an all too prevalent one among people with disabilities. One in five Australians has some form of disability and parents (usually mothers) with disabilities are up to ten times more likely to lose custody of their children ...

Christmas win for employees with disability: BSWAT settlement

People with Disability Australia, 17th December 2015:

The long-standing  Business Services Wage Assessment Tool (BSWAT) wage case has been settled, with employees with disability to receive 70% of their backpay.

People with Disability Australia (PWDA) and the AED Legal Centre have warmly welcomed this decision by the Federal Government and hailed it as a win for employees with disability. 

"We would have preferred the Government came to the table a lot sooner, rather than drag this through the courts, but we are pleased to have an outcome which sees wage justice for these employees," said Samantha French, Manager, Employment and Wage Justice, PWDA.

"While these employees will only get 70% of their backpay, this is better than the 50% the Government was previously offering, and it will be tax free. This money will also not affect Centrelink payments or concessions," said Ms French.

"PWDA and AED are committed to working with the Government in an open manner, with the interests of people with disability at the centre, to further improve wages for people with disability," said Kairsty Wilson, Senior Legal Practitioner, AED Legal Centre.

"We encourage supported employees to register under the BSWAT Payment Scheme," said Ms Wilson.
This decision has no financial impact on Australia Disability Enterprises(ADEs - previously called 'sheltered workshops') with the Government providing the funds for the backpay.

"PWDA would like all ADEs to start setting wages using fair wage assessment tools that do not discriminate on the basis of a person’s disability." said Ms French.

Workers with disability are encouraged to register with the BSWAT Payment Scheme. Contact AED for any help with registration - leave a message on (03) 9639 4333 or email:

BSWAT backgroundIn December 2012, the Full Federal Court ruled that the Business Services Wage Assessment Tool (BSWAT) used to set wages for employees with intellectual disability in ADEs was unlawful under the Disability Discrimination Act (DDA). In May 2013, the High Court of Australia agreed that BSWAT disadvantaged employees with intellectual disability.

Since then, the legal case for fair wages has continued - full background to the case here.

Thursday, 17 December 2015

'Born This Way': on US TV

Born This Way is a six-episode 'docu-series', following the lives of seven young adults with Down syndrome living in Southern California. It premiered in the US last wee, but the online episodes are not available for viewing via Australian internet connections. You can glean a little of its flavour from the trailer videos online. Reaction from viewers seems to be very positive, although some commentators said they hesitated to watch it because of past experiences of the representation of people with Down syndrome on TV. With the second episode broadcast in the US this week, we expect to hear a broader range of responses, that are interesting, even if we haven't seen it yet.

We will be on the lookout for it on Australian television in the future, or perhaps on DVD. In the meantime, here are some early responses:

born this way
Sue Robins, 14th December 2015
... Make a wish, Santa says and Aaron immediately replies: I wish for a wife. A wife! I don’t know what to do with that wish. I know that Aaron’s wish for a wife is a wish for love and belonging. I wish that for him too ...

To the Creators of ‘Born This Way,’ From a Person With a Disability
Emily Wachter, The Mighty, 11th December 2015
... Thank you for taking me inside the lives of seven people with Down syndrome.

Thank you for showing the struggles of a person with special needs.

Thank you for showing that others with special needs can live normal lives.

Thank you for showing that some people with disabilities have a hard time accepting our diagnoses ...

Tearing Down Barriers Through Television
Jennifer Laszlo Mizrahi, Huffington Post, 11th december 2015
... Sadly, for generations, television has shown people with disabilities as objects of pity. From the Jerry Lewis telethons, to stories where school teams become heroes simply by letting one kid with a disability play for a few minutes out on the court or field, our television sets have brought us stigmas that undermine the one-in-five Americans who have a disability.

Thankfully, with A and E Networks' new show, "Born This Way," there has been a major breakthrough. Finally, people with disabilities and their families are being shown honestly.

Known in the Twitterverse as #BornThisWay, the show follows seven dynamic young adults with Down syndrome and their families as they navigate jobs and relationships and look to gain greater independence ...

Born This Way - Reactions from Josh's Mom
Walkersville Mom, 9th December 2015
I’ve been waiting for what seems like F-O-R-E-V-E-R to see Born This Way on A&E. I can honestly say it did not disappoint! ...

If you get to see it, let us know what you think!


First Stop Transport - website launched
Transport for NSW has launched a new website today, First Stop Transport, where you can learn about how to make using public transport easier.

It provides an eLearning module about how travel training can help people with disability become more independent.

New DVD: Living with intellectual disability and dementia
Alzheimer’s Australia New South Wales (NSW) has developed a new resource to support people living with dementia and intellectual disability, and the individuals and organisations working in the disability and aged care sectors who assist them. 
The DVD Living with Intellectual Disability and Dementia contains information on assessment and diagnosis, and the support available for people living with dementia and intellectual disability, enabling their ongoing involvement in the community. 
It is also a resource for family members and friends who are concerned about signs of cognitive decline in a relative or friend who lives with an intellectual disability. 
Alzheimer’s Australia NSW provides ongoing professional education to both the aged and disability sectors, and free carer education sessions to family members and friends of people living with an intellectual disability and dementia.
Contact details are provided on the web page about the DVD

Easy Read information sheets
The Down's Syndrome Association (UK) publishes a number of information sheets in Easy Read format. Easy Read means simple writing with a picture to explain the writing.

Some are more relevant to UK readers, but others are useful everywhere.

Wednesday, 16 December 2015

Another step towards inclusion and visibility

Just a few days till Christmas, you'll possibly be at a large shopping centre sometime in the next few days ... so if it doesn't land in your letterbox first, make a note to pick up the new catalogue from Target, and find Caleb Jordan in it. It's more than an ad in a catalogue:

Ad inclusion:Caleb Jordan for Target Australia
Starting with Julius, 14th December 2015
... Today was a big deal for ad inclusion in Australia and an even bigger one for Caleb who features in the latest Target Australia catalogue. While it is not the first time that Target Australia has featured models with disability, it is the first time in a long time and we hope that it represents a significant step for the brand in adopting inclusive advertising as standard practice ...
... until people with disability are welcomed as equal participants in mainstream culture, it is difficult to see an end to their exclusion from schools, workplaces, community and all other areas of life ...

Added 17th december 2015:

Tuesday, 15 December 2015

Going to college

Post-school education opportunities for people with Down syndrome and other intellectual disabilities continue to increase, with the US leading the way:

Elevated: Program for students with intellectual disabilities part of new norm
Kevin Opsahl, Herald Journal, 28th November 2015
Jenna Mosher remembers her reaction almost two years ago to opening the mail addressed to her from Utah State University stating she was accepted to a new program for young adults with intellectual disabilities.

“I put my hand over my mouth; I was speechless,” said Mosher, a graduate of Park City High School, who has a cognitive disorder and wasn’t sure she’d ever find a higher education institution that fit her needs ...

Surprising idea for special education students: Go to college
Betsy Hammond, The Oregonian/OregonLive, 26th november 2015
In Portland and around the country, a generation of children with intellectual disabilities has grown up integrated into their schools and society like never before ...

College access not impossible anymore for those with intellectual disabilities
Shasta Kearns Moore, Portland Tribune, 10th December 2015
“I want to go to college,” said Daniel Jarvis-Holland, and the room erupted in laughter. But not for the reason you might think.

Daniel, a sophomore at Benson Polytechnic High School who has Down syndrome, used his “British accent” to make the statement at the national disability rights TASH conference in downtown Portland on Thursday, Dec. 3. The audience was laughing with him at his false pomposity.

It is that sort of inclusiveness and social interaction that Daniel and his team of supporters hope he can achieve at Portland State University, while simultaneously bettering his odds at a self-sustaining life and career.

Portland State University recently won a $2.5 million federal grant to set up a college program for individuals, like Daniel, who have intellectual disabilities ...

2016 DS NSW Calendar now available

Bigger than Star Wars (almost)! Brighter than NYE fireworks - it's the 2016 Down Syndrome NSW Calendar!
Get you copies now by emailing with your payment details and we will post the same day (up to and including Friday 18 December)

A big thank you to our wonderful volunteer calendar creator Craig Peihopa and all the fabulous families who shared their photos.

Monday, 14 December 2015

Parent workshops: March 2016

Teaching Maths and Financial Literacy

Down Syndrome NSW is pleased to announce two maths workshops for parents/carers by leading mathematics researcher and lecturer, Dr Rhonda Faragher. 

These parent workshops tackle two areas of learning that are both challenging and enormously useful for navigating life at and beyond school.

The brochure provides an outline of workshop outlines. Registrations are now open online. 

Wednesday 16 March, 2016 

SMC Conference and Function Centre, 66 Goulburn Street

Mathematics for Young Learners
 6.00pm - 7.00pm 
Cost $55 incl gst 

Financial literacy for Learners with Down syndrome
7:30pm - 8:30pm 
Cost $55 incl gst

For more information please contact 

Rhonda Faragher, PhD, is an academic working in the field of inclusive education and is currently with the Learning Sciences Institute Australia, Faculty of Education and Arts, Australian Catholic University. She chairs the Asia Pacific Down Syndrome Federation, is a Board Member of Down Syndrome Australia, Trustee of Down Syndrome International and ViceChair, International Association for the Scientific Study of Intellectual Disabilities Down Syndrome Special Interest Research Group. She has taught mathematics from early childhood to tertiary level and her research and teaching is based on the premise that all learners can enjoy and be successful at mathematics. She is the author of a number of publications, including an editor of the recent book, Educating Learners with Down Syndrome, published by Routledge. Rhonda has received a number of awards for her work, including the Commonwealth of Australia Endeavour Executive Award and the Vice-Chancellor’s Teaching Excellence Award from James Cook University.

News and opinion from the wider disability community

Most of these links are to news and opinion pieces about difficult aspects of living with disabilities. They are not hard to find - eight of nine were published within the last two weeks. But if they are not discussed openly it will remain so -  we can't change things we don't even know about. So if we can play a very small role in bringing them to the attention of people who are likely to be interested in promoting the changes needed (you), then it is the very least we can do:

Reporting disability on IDPwD
El Gibbs, Blunt Shovels, 1st December 2015
... The theme of this year’s International Day of People with Disability is‘Inclusion matters: access and empowerment for people of all abilities‘ and includes some key areas:
  • Making cities inclusive and accessible for all
  • Improving disability data and statistics
  • Including persons with invisible disabilities in society and development.
What would stories look like if they were actually about these kind of themes? Would they continue to be the kind of saccharine, boring coverage of a morning tea somewhere? I don’t think so ...

Gun Violence and #DisabilityTwitter
David M Perry, How Did We Get Into This Mess? 3rd December 2015
Soon, we found out that the killing took place at a disability services center, and my personal network of disability rights activists, disabled individuals, parents, caregivers, service providers, and so much more encapsulated by #DisabilityTwitter fell apart emotionally ... We braced for the worst. We were relieved, if guiltily, when it became clear that the worst wasn't in fact the case.

You see, we're ready for someone to target disabled people with violence. We're expecting it. We're expecting it because it's constantly happening, even though most people are unaware ..., 5th December 2015
... So what’s all the hype about? The reality is that our society does not value disabled people. We (yes I’m saying “we” because autism is a disability and I am autistic – it would feel weird to say “they”) are seen as dependents, non-contributing entities, demi-humans whose lives are just a weak, broken, inferior version of “real,” “normal” people’s lives. Mostly, disabled people are just flat out ignored ...
Moo Baulch and Jess Cadwallader, Daily Life, 2nd December 2015
It's the too-often-forgotten part of the conversation when we talk about violence against women: the abuse that women with disability face.

Despite experiencing significantly higher rates of all types of violence, with some added unique extras including sterilisation and the threat of institutionalisation, most of the investment in and focus on violence prevention continues to leave this group of women quietly hidden ...

DatMoo Baulch and Jess Cadwallader, Daily Life, 2nd December 2015
The state (and importance) of disability media,
Carly Findlay, 3rd December 2015
... Whether it be disabled media makers, or media about disability, stories need to be told. This latest case highlights just important it is. I hope that Australia can run independent disability media awards through The Media and Arts Alliance or the Walkley Awards in the future.

I am scared for the future of disability media. There's very little mainstream media about disability, and what is shown is often inspiration porn. It's focussed on overcoming obstacles and even glamourising illness in Hollywood ...

Launch of ‘No Longer Shut Up’ – a celebration of the life of Mabel Cooper (1944-2013)
Liz Tilley, Social History of Learning Disability (SHLD) News and Reflection (Open University), 4th December 2015
... Mabel Cooper was a truly inspiring woman, who was a key figure in the SHLD group and a self-advocate who made waves across the world. She championed the rights of people with learning disabilities, and was determined that others should not have to endure what she had experienced, incarcerated at St Lawrence’s Hospital, Catheram, for 20 years. In her words, people with learning disabilities should never again be ‘shut up’ ...
Max Chalmers, New Matilda, 8th December 2015
There are three broad reasons advocates provide when asked why a royal commission into abuse, neglect and violence against people with disability is needed. Yet the most convincing argument is simply to recall stories like Natalie’s ...

Lack of choices about end of life

Jason Walls, Bendigo Advertiser, 13th August 2015
A Victorian parliamentary inquiry has heard few people with intellectual and developmental disabilities are supported to make choices about how or where they die.

In a submission to the inquiry into end of life choices at the Bendigo Town Hall on Wednesday, La Trobe University professor of rural and regional allied health Teresa Iacono said this was part of a broader trend in which people with IDD often had limited choices about their everyday lives ...

National Ethnic Disability Alliance presents inaugural NEDA medals
University of Sydney, 8th December 2015
Dr Dinesh Wadiwel, Professor Mary Crock and Emeritus Professor Ron McCallum AO have received National Ethnic Disability Alliance medals for their ongoing advocacy for the rights of migrants with disabilities.

Friday, 11 December 2015

'Notes on a Scandal': SBS TV, Saturday

Notes on a Scandal, the 2006 movie in which Max Lewis played the son of Cate Blanchett and Bill Nighy, is showing on SBS TV (Channel 3 in Sydney) tomorrow night (Saturday 12th December) at 8.30 pm.

Click here for an extract from his mother, Sandy Lewis's book, Living With Max, published in the UK newspaper, The Daily Mail in 2008.

Max with his screen father, Bill Nighy, in a scene from Notes On A Scandal

Weekend reading and viewing: 12th - 13th December 2015

How she is her best advocate
Ellen Stumbo, Hope and Encouragement, 4th December 2015
Nichole walked into the eye clinic ready to get her glasses fixed – she knew what to do – she sat at the open desk before one of the two attendants who work there and smiled. This was a new attendant to us, one we had never worked with before. I recognized “the look” right away ...

Sian Davey's best photograph – my daughter Alice, who has Down's syndrome
Sian Davey, The Guardian, 10th December 2015
... I was not prepared for how I would respond after Alice was born. She did not feel like my other children, and part of my instinct was to pull away from her. I was fraught with anxiety; I once dreamt Alice was swaddled in a blanket and I had forgotten all about her.

Alice was so small, but I knew she could feel my rejection. I was deeply sad that I could not immediately love my child – I wanted to make our relationship better, and the responsibility lay with me ...

What I call positive
Heather Saunders, This Calm Chaotic Life, 29th November 2015
... “Right, I’m going to be a bit controversial! I have lots of positives, but not all of them will be regarded as such by everyone. I love the fact that my daughter (17 next month) is grumpy, stroppy, loud, funny, uncooperative, stubborn, enthusiastic (on her terms!), musical (as are her 3 siblings) ...

All that matters
Paul Critchlow, Orange Juice Flavour Sky, 3rd December 2015
... This was also a day that Emily would never forget. She had been asked by Gloria and Steve to sing during their service. Not as part of a group or a choir or even a duo. She had been asked to sing a solo, accompanied only by her brother in law on guitar ...

Changing perspectives, paradigm shifts, and a lesson from a teenager
Alex McAuley, The Life That Max Built, 10th December 2015
... I knew I had undergone a huge paradigm shift when my answer to the ‘cure’ question changed from ‘yes’ to ‘no’ ...

The low-stress hair salon for people with disabilities
Kate Monaghan, BBC News, 10th December 2015
Liz Stewart used to have such problems getting her son Delroy to have a haircut that she ended up cutting his hair while he slept ... So she came up with the idea of opening a salon for people with additional needs to get their hair cut in a low-stress environment ...

NDSC film expert reviews 'Spectre'

We know there are are many, many James Bond fans out there ...

NDSC: How many stars would you give this James Bond movie out of 5 stars for excellence? 
Chess’s answer: 5 stars = Crazy action and I love all the James Bond movies ...

Check the links on the right of the NDSC  'News' page for more of Chess's movie reviews. 

Thursday, 10 December 2015


British Institute on Learning Disability, December 2015
A film featuring the voices of three people with learning disabilities talking about their experiences of getting older and the importance of staying active.
Includes guidelines for discussion.

Welcome Home: transitioning from one reputation to another
Service, Support and Success, Vol 4, Issue 12, December 2015
There is a difference between a diagnosis and a reputation. A diagnosis takes a bunch of behaviours, tosses them in a box, ties them up with a nice bow, and sticks a label on to warn people of the contents. It’s clean. It’s neat. It’s very, very, clinical. A reputation, however, is something quite different, particularly for people with disabilities ... This is written for those of you who one day may be challenged to offer service to someone who, despite reputation, despite diagnosis, despite fears and despite risks, like everyone else, needs a safe place, a place to call home ...

Universal Design for Writing About Humans
David m Perry, How Did We Get Into This Mess? 7th December 2015
The National Center for Disability Journalism at Arizona State University has released a new style guide for writing about disability ... There's also a "words not to use" document.
... While I don't think it's possible, or desireable, to get past these lists - it's great for journalists and editors doing quick checks on appropriates style - the release has made me wish for a universal design for writing about other humans ...

Discrimination in health care: 'do not resuscitate'

Instances of blatant and more casual discrimination against people with Down syndrome come to light every week, alongside reports of progress towards more inclusive communities. This one from the UK is worth noting because it probably happens much more often than is reported, and families need to be alert to the possibility at a time when a person with Down syndrome (or any disability) is particularly vulnerable:

Hospital sorry for 'do not resuscitate' order on patient with Down's Syndrome
Jane Dreaper, BBC News, 8th December 2015
A (UK) hospital trust has apologised for placing a "do not resuscitate" (DNR) order on a patient with Down's Syndrome - and listing his learning difficulties among the reasons for doing so ...
Down's Syndrome Association (UK) comment:
We are very disappointed to hear that Down’s syndrome has been listed as a reason for putting a “do not resuscitate” (DNR) order on the medical file of a vulnerable patient at the Queen Elizabeth the Queen Mother Hospital in Margate, Kent. We had thought that this sort of discriminatory behaviour was a thing of the past. We hope that the media focus on this high profile case will ensure that there will be no further incidents of this nature ... Down's Syndrome Association (UK), on Facebook, 8th December 2015

Wednesday, 9 December 2015

Inquiry: Indefinite detention of people with cognitive and psychiatric impairment in Australia

Hamiltonstone Creative Commons Attribution-Share Alike 3.0 Unported license.

On 2 December 2015, the Senate referred the following matter to the Senate Community Affairs References Committee for inquiry and report:

1. The indefinite detention of people with cognitive and psychiatric impairment in Australia, with particular reference to:
a. the prevalence of imprisonment and indefinite detention of individuals with cognitive and psychiatric impairment within Australia; 
b. the experiences of individuals with cognitive and psychiatric impairment who are imprisoned or detained indefinitely ... read the remaining 12 terms of reference here.
2. That for the purposes of this inquiry:
a. indefinite detention includes all forms of secure accommodation of a person without a specific date of release; and 
b. this includes, but is not limited to, detention orders by a court, tribunal or under a disability or mental health act and detention orders that may be time limited but capable of extension by a court, tribunal or under a disability or mental health act prior to the end of the order.
The inquiry home page includes links to an Easy English guide to making a submission, and contact details for the secretariat, for further information.

Submissions should be received by 8 April 2016. 

The reporting date is 30 July 2016.

Infantile Spasms: US awareness week resources

Full-screen version of this poster
Infantile Spasms (also known as West Syndrome) is a type of epilepsy that occurs a little more
often in babies with Down syndrome than in other children.

Last week was IS Awareness Week 2015 in the US, and new and updated resources were circulated. They are still available online, and might be of use to families.

The Awareness Week website is here, and a Facebook page will be active for a time yet.

Tuesday, 8 December 2015

Language, please ...

This is found all over the internet, although little appears to be known about Elaine Popovich:

You and I
Elaine Popovich

I am a resident. You reside.

I am admitted. You move in.

I am aggressive. You are assertive.

I have behavior problems. You are rude.

I am noncompliant. You don't like being told what to do.

When I ask you out for dinner, it is an outing. When you ask someone out, it is a date ...

News and commentary on the NDIS (41)

24th November 2015
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NDIS and Me
People with Down syndrome and/or their families and carers can join the new closed Facebook Group, NDIS and Me,  for discussion specifically about the NDIS and people with Down syndrome.

Tasmania becomes third state to sign up to National Disability Insurance Scheme
ABC News, 3rd december 2015
Tasmania has become the third state to sign up to the full-rollout.More than 10,000 Tasmanians are expected to benefit from the full roll-out of the National Disability Insurance Scheme (NDIS), which will start next year ...

BREAKING NEWS: First round of funding for NDIS housing
Disability Services Consulting
, 4th December 2015
It's not a lot of money but the Department of Social Services (DSS) has finally broken ground and announced real dollars for NDIS housing. 
DSS is making $10m available in grant funding to complete housing projects for people with disability outside the NDIS trial sites. This funding is designed to assist projects that have already secured most of their finance from other sources. 
The projects must be for people with disability who living in areas outside the NDIS trial sites . The ideal target group are people with disability who are currently living with ageing carers or living in residential aged care. The expectation is that residents will be eligible for the NDIS when it is implemented in the resident's local area.
Applications are due 11 February 2016. Further information and application forms can be found here.
‘Reducing the Inequality of Luck’
Bruce Bonyhady, Chairman, National Disability Insurance Agency, 11 November 2015
Australasian Society for Intellectual Disability 50th Annual Conference, Melbourne
... According to the OECD, 45 per cent of Australians with a disability were living at or below the poverty line in 2010 – the worst outcome of any OECD country. 
Our record in terms of employment of people with disability is also very poor, ranking in the bottom one-third of OECD countries. 
And, most disturbingly, people with a disability are significantly overrepresented in Australia’s jails. 
More change is necessary – and, ladies and gentlemen, that change does not begin and end with the National Disability Insurance Scheme. 
And that’s what I want to talk to you about this morning ...
Waiting for the NDIS: Samuel’s story
Every Australian Counts, 3rd December 2015
On International Day of People with Disability we’re reminding governments just how important the NDIS is to the many thousands of people still waiting to find out when it will come to them. People like the Klopf family from Adelaide…

Is Australia ready to give people with disability real choice and control over services?
Helen Dickinson, The Conversation, 24th November 2015
... The existing one-size-fits-all approach was built more around the needs of organisations and the system than people with disability. But what might happen if NDIS users want to purchase very different sorts of services? Would politicians have the courage to stand up to backlash caused if people with disability used their care money to pay for overseas holidays, sex workers, internet dating subscriptions or tickets to sporting events? ...

NDIS Quality and Safeguarding Framework – Consultation report
Commonwealth, State and Territory disability ministers have released this report which summarises the outcomes of public consultations on quality and safeguarding in the NDIS in early 2015. Links to download the report are included.

Advocates warn disability workers struggle with low pay, staff turnover and casualisation
Christopher Knaus, Canberra Times, 18th November 2015
Disability advocates have warned that support workers are struggling with woeful pay, high turnover, and casualisation, while dealing with added responsibilities and complexities in group homes ...
... "It's not going to be solved by the NDIS. Everybody is just thinking the NDIS will fix all of this, but the truth is it won't." ...

A Rabbit in the NDIS Headlights?
Roland Naufal, Disability Services Consulting, 30th November 2015
Some of the disability service providers I have met over the last couple of years remind me of a rabbit in the headlights. They see danger ahead but are not responding. I think I am now beginning to understand why they are stuck in the midst of the dramatic NDIS change ...

Carers Australia - videos about preparing for the NDIS
Carers Australia has developed a series of short videos that provide information about the NDIS to help support families and carers as they join the scheme

Disability sector has grave concerns about NDIS roll out
Rachel Browne, Sydney Morning Herald, 7th December 2015
Disability groups have reported an alarming lack of confidence in the NDIS roll out ahead of the full transition to the $22 billion scheme which will launch across the country next year. Only one-third of organisations in trial sites reported scheme administrator, the National Disability Insurance Agency, was working well with providers and almost two-thirds said governments were not responding to their requirements ...

Monday, 7 December 2015

NSW CID Statement on 'when ADHC stops and NDIS starts'

As the peak State body advocating for the interests of people with intellectual disability, the NSW Council for Intellectual Disability (NSW CID) takes a keen interest in the development and implementation of the National Disability Insurance Scheme, in all its aspects. 

This week, NSW CID has issued an important position statement about the closure of the NSW government's Ageing, Disability and Home Care services that will coincide with the full implementation of the NDIS:

When ADHC stops and the NDIS starts: what needs to happen for people with intellectual disability
The NDIS is an historic opportunity for people with intellectual disability to get the services they need and want. 
In this position statement, NSW CID spells out our stand on how these two processes should come together to ensure the best possible outcomes for people with intellectual disability ...
... NSW CID have been strong and leading advocates on these issues for some time but will be continuing our advocacy with the state and Commonwealth government and other key influencers. 
Ensuring the needs and wants of people with intellectual disability are front and centre of any major policy decision is key.

Friday, 4 December 2015

Weekend reading viewing: 5th - 6th December 2015

Balancing the scales in favour of equality (and loving the women in Max’s life)
Alex McAuley, The Life that Max Built, 20th November 2015
... The men in his life are wonderful: they are kind, supportive, caring, but mostly fun. The women in Max’s life are his rocks: they are the ones who are sensible, offer practical advice and support, and sort out his washing when needed! This doesn’t mean they’re not fun as well, but the necessities of daily life take priority over the play time ...

Why college matters for people with disabilities (2m 35s)
Teresa Mahoney, Oregon Live, 21st November 2015
Daniel Jarvis-Holland is a sophomore at Benson Polytechnic High School. He has Down syndrome and wants to go to college. Now he finally can. PSU is pioneering a way for young Oregonians with intellectual disabilities to attend college via the Think College Inclusion Oregon (TCIO) project. Watch the video to learn why the college experience matters for people with disabilities ...

First gig
Orange Juice Flavour Sky, 30th November 2015
... make sure you do something for you every now and again to help you stay sane. This is not always easy but it is vital. Go book yourself some tickets to a concert, go to a spa, go do your thing, whatever that may be. But do something to help you feel alive ...

History of Down Syndrome - timelines
Global Down Syndrome Foundation
The Global Down Syndrome Foundation is committed to improving the lives of people with Down syndrome through research, medical care, advocacy and education. An important part of that entails educating the general public about the history of Down syndrome – both from a medical standpoint and a human-rights perspective. To this end, the Global Down Syndrome Foundation has created two timelines to illuminate the medical and civil rights progress made surrounding people with Down syndrome and other developmental disabilities. These timelines are available in simple text or an interactive format.
Dave Hingsburger, Rolling Around in My Head, 3rd December 2015
.. I am celebrating (International Day of People with Disability) here. On my blog and in my life. It's an important day on my emotional calender. I need these days. Days that remind me to stop and ponder. Days that remind me that I am part of something much bigger - a community of people, of voices, who have fought bloody but bloodless battles against attitudes and barriers. Those who lived and died locked away and those who flung open the doors.

I am here.

And I am not a party of one ... because

... we are here ...

David M Perry, How Did We Get Into This Mess? 3rd December 2015
... I want to reflect a bit on watching the San Bernardino story unfold. I was sitting in my office working on a white paper on media coverage of police violence and disability (coming soon, with my favorite co-writer), when the news broke of the killing. Soon, we found out that the killing took place at a disability services center, and my personal network of disability rights activists, disabled individuals, parents, caregivers, service providers, and so much more encapsulated by #DisabilityTwitter fell apart emotionally ...

Rachel Pupazzoni, ABC News 24, 2nd December 2015
A world first where Auslan signers will be centre stage with an orchestra and 500 strong choir to perform the well known work at the Sydney Opera House.

The Don't DIS my ABILITY campaign's profile image
available for your Facebook page here

Latest additions to 'events' pages

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.

Having A Say 2016: ready, set, Connect!
The largest conference for people with disability in Australia. Life doesn’t have to be a lonely marathon. It can also be a fun run. There are others who share your hopes and dreams. There are others who share your doubts and fears. They need you as much as you need them.
Wednesday, 10th to Friday, 12th February 2016 - Geelong

Harness the Possibilities: Enriching lives in changing times
Resourcing Families conference - explore ideas, make new connections and leave with practical ideas for making positive change that affords people with disability a real life beyond a service or programme. Registrations open now.
17th - 18th February 2016 - Coffs Harbour
17th - 18th March 2016 - Wagga Wagga
4th - 5th May 2016 - Dubbo

Thursday, 3 December 2015

International Day of People with Disability 2015: 3rd December

International Day of People with Disability: 'We don't need people to become more aware of us. We are here, claiming our spaces'
Carly Findlay, Daily Life, 3rd December 2015
... Last year I gave a speech, and was spoken over by a man who told me how he thinks I should feel ... I was taken aback by his response. I answered on my feet, to the whole audience. I said something like: "I think there is a perception that activists are negative when they share their and others' reality. The things I talked about happened to me. The statistics I quoted are real. I'm not going to gloss over them."

Attitude Foundation to up the ante on disability in Australia
Graeme Innes, Attitude Foundation, 1st December 2015
"We will be shown as neither victims nor heroes, but agents of our own destiny", Graeme Innes
We need a disability abuse Royal Commission
Craig Wallace, Open Forum, 2nd December 2015
So this International Day of People with Disability, instead of the usual celebrations, the most appropriate thing the new Turnbull Government could do is announce a Royal Commission into violence against people with disability to lance a great evil and cauterise the wound lest we repeat mistakes made in the institutions and practices of the past ... 

NSW Audit Office: Learning and Support for Students With Disability Survey

Both families and school can are invited to provide feedback on how well the NSW Department of Education is managing the transition to school for students with disability, and supporting teachers to improve their educational outcomes, via a current NSW Audit Office survey:
The aim of this audit is to assess how well the NSW Department of Education (the Department) is managing the transition to school for students with disability, and supporting teachers to improve their educational outcomes. We aim to answer the following questions:
  • is the Department identifying and meeting the needs of students with disability when they transition to a new school?
  • is the Department effectively supporting teachers to achieve their desired learning outcomes for students with disability?
We have developed this survey to obtain feedback from families of students with disability and school staff in NSW public schools about their experiences. This includes both areas for improvement and examples of good practice.
The survey takes around 15 to 20 minutes to complete.
Both surveys will close 5 pm, Friday 18 December 2015.
Learning and support for students with disability in NSW public schools - to be completed by school principals and/or teachers in NSW public schools
We have developed this survey to obtain feedback from principals, teachers, and other school staff in NSW public schools about their experiences of teaching students with disability. This includes both areas for improvement and examples of good practice.
Learning and support for students with disability in NSW public schools - to be completed by families of school students with disability attending NSW public schools
We have developed this survey to obtain feedback from families of students with disability on their experiences in the NSW public school system. This includes both areas for improvement and examples of good practice.
Visit the NSW Audit Office page for further information and for links to the appropriate survey for you.

Wednesday, 2 December 2015

People with Down syndrome ... 'this is me'

2015 Sydney Inner West Youth Volunteer of the Year is Bridget Rose Kelly who volunteers with Plumtree Early Childhood Intervention Service

News from Volunteer Network, November 2015
Bridget Rose Kelly from Stanmore is a student at St Scholasticas College at Glebe and volunteers at Plumtree Early Childhood Intervention Service. Bridget has been a hardworking, reliable and devoted volunteer with Plumtree Early Childhood Intervention Service since 2013, assisting young children who have additional needs and their families.

Bridget assists with a multitude of tasks at the service, including the open playgroup on Saturdays. As Bridget is particularly artistic, she creates resources for the teachers and therapists, which include booklets, charts, augmentative and alternative communication boards, games, fine motor activities and workshop resources.

Bridget makes quality resources that are individual for each child depending on the child's needs. This gives children, staff and families access to games and activities that often take a very long time to make. With the growing demand for services and resources, Bridget’s hand-made resources assist the school to provide individualised and innovative services for children and their families in a timely manner.

In addition to volunteering at Plumtree, Bridget also volunteers at FRANS, a local disability support organisation, and continues to seek other opportunities to contribute to her local community through her invaluable volunteering.

The inspiring story of Katrina Sneath
Ryan Bridge, 3 News (NZ), 10th November 2015
Here's a story for all those students about to sit their end-of-year exams. Maybe you're procrastinating, going on Facebook, hanging out with your mates, when really what you need to do is just study.

However Katrina Sneath is one woman you would never catch mucking around when she should be studying – she's already passed NCEA level 2 with flying colours, despite having Down syndrome ...

This is me - by Lauren Potter
Amy Poehler's Smart Girls, 12th November 2015
... I started to speak up for myself and just tell the mean kids to grow up. Now, I speak up for other people too. I’m not afraid to tell people how their words hurt me. I think that if a word or phrase hurts someone’s feelings then we should care enough to use words that don’t hurt other people. When I speak up for others and care about other people, and treat people with love, I feel so much better about myself ...

New (US) TV Series Features Young Adults With Down Syndrome
Shaun Heasley, Disability Scoop, November 16, 2015
The production company behind “Keeping up with the Kardashians” and other reality television staples will debut a new documentary series following young adults with Down syndrome ...
Nathan Basha NSW Young Australian 2016 finalist 
Nathan Basha was a finalist in the 2016 NSW Australian of the Year Awards - an achievement in itself. Nathan did not win the award, but posted a gracious congratulatory message to the winner, on his Facebook page on 17th November (check it out for the photos from the event too):
Such an incredible evening last night at the NSW Australian of the Year Awards. It was a privilege to be amongst so many passionate and amazing people who are all working for and achieving social change. Congratulations to Melissa Abu-Gazaleh CEO and founder of Top Blokes Foundation NSW Young Australian of the Year, NB will be getting behind her and wishing her all the best for Young Australian of the Year, I encourage you to get behind her as well!!
Congratulations on making the finals, Nathan - we can see why you did.