Saturday, 18 April 2015

Weekend reading: 18th - 19th April 2015

True or False: 90% of Babies with Down Syndrome are Aborted
Amy Julia Becker, Thin Places, 13th April 2015
For years, I have read news headlines in Christian and secular outlets, from conservatives and liberals alike, stating that “90% of babies with Down syndrome are aborted.” As I have argued before, and as a new study demonstrates, it’s just not true. Correcting this common misconception matters both in providing accurate information to pregnant women and in normalizing the experience of receiving a child with Down syndrome ...

What it's really like to have a child with Down syndrome
Jessica Voetmann, The Voetmann Family, 25th September 2014
... What I’d like to share in this post is what it’s really like to have a child with Down syndrome, for me at least because I’m sure everyone’s experience is completely different. No sugar coating, no pity party. Just the reality of it ...
News Anchor to Home Maker, 14th April 2015
... when I learned about your brother’s diagnosis, I sadly exited the present and lived in your future ...

Recognising pain in the non-verbal child
Yvonne Newbould, The Special Needs Parents' Handbook, 14th April 2015
... What if you were really in extreme pain, and nobody knew? What if, despite screaming out and thrashing about and doing everything you could think of to try and alert other people to help you with this excruiating pain, someone assumed you were “playing up” and “being difficult”. It happens ...

Carers deserve more credit in the retirement incomes debate
Myra Hamilton, The Conversation, 2nd April 2015
Australia could not function without the enormous and mostly hidden contribution of carers. We are talking not only of parents of small children, but also of the large number of Australians who provide care for people with disability, a long-term illness or frailty due to old age. Yet because of their commitment to meeting the needs of others they are much more likely to live in poverty in their old age ...

Student diversity category: award winner and runners up
The Guardian, 19th March 2015
Last year, the (Royal Central School of Speech and Drama) launched its performance making diploma for learning-disabled adults, in partnership with the learning disabled theatre company Access all Areas. The aim was to widen participation to a group often excluded from performance-related training courses and from the professional theatre industry ...

Friday, 17 April 2015

2015 'Focus on Ability' Short Film Festival

Entries are open for the 7th Focus on Ability Short Film Festival, run by Nova Employment.

In 2014 180 films were entered and the winners shared in over $90,000 in prizes.

Screenshot from the 2015 Focus on Ability website
This year is set to be the biggest yet with all films entered to really showcase the talents people with disabilities possess. With over $100,000 worth of cash and prizes to be won this is a highly contested competition.

The theme for the competition asks film makers to 'Focus on the Ability' of people with a disability.

The competition culminates in an awards night held in Sydney on September 9, 2015 as well as a special school screening on September 8, 2015, full details to be announced on the Focus on Ability website in coming months.

Entries for the festival close on July 10, 2015.
Follow Focus on Ability on Facebook, and/or on the blog

Thursday, 16 April 2015

Why Andrew rides in the Scrapheap Adventure

Andrew Hunter has an excellent motivation for becoming a Scrapheap Adventure Rider - his video tells you who it is (and you can see his great shed):

Direct link to this video

2015 Scrapheap Adventure Ride - Urana NSW

Cátia Malaquias at the UN in Geneva

Cátia Malaquias is the mother of a young son with Down syndrome, from Perth. You might recognise her name from her campaign to have people with disabilities included in advertising images, to represent the real community.

On 20th March, Cátia represented Down Syndrome Australia at the United Nations in New York to supporting the presentation of The Special Proposal, a World Down Syndrome Day campaign with CoorDown Onlus Coordinamento associazioni persone Down and other international associations.

Yesterday,  Cátia continued her advocacy on behalf of Australians with Down syndrome with the United Nations in Switzerland:

Why I am in Geneva Today
Cátia Malaquias, Attitude Foundation, 15th April 2015
This morning, I am in Geneva, Switzerland, to attend the Day of General Discussion (DGD) at the United Nations. This meeting is being held with State parties to the Convention on the Rights of Persons with Disabilities, human rights and disability organisations and other interested parties, arising in part from the concern of the UN Committee on the Rights of Persons With Disabilities that the exclusion and discrimination experienced by children and adults with disability hinders broader social and economic inclusion in their later lives, in all spheres ...

... Why have I come here? Because I am deeply disappointed by the submission made by the Australian government to the Committee for the DGD. ... (that) ... merely asserted that the legal framework for its education system was "consistent" with the Convention. This assertion carries with it the claim that Australia is complying with its obligation to “ensure an inclusive education system”. Australia’s submission then goes to considerable lengths to emphasise that the Committee should read the obligation to provide "inclusive education" as depending upon "available resources" and being only to the extent of "reasonable accommodation" ... read all of Cátia's guest post here, including a link to her submission to the UN

Wednesday, 15 April 2015

Cinderella: invitation to a private screening in support of Down Syndrome NSW

Down Syndrome NSW has a long association with the Parramatta area – the first public meeting to set up the Association was held in Parramatta and our office has been in and around the area for the last 35 years.

So we are delighted that the Lady Mayoress, Kirsty Lloyd, has chosen DS NSW as one of her nominated charities for the year with a private screening of Disney’s new live action 'Cinderella' on Tuesday 21 April.

DS NSW members are invited to dust off your tiaras and put break out the pumpkin for a night of champagne and canapes at Event Cinemas. Get together a group of friends and come along to join us for a great evening – with all proceeds going to our work supporting people with Down syndrome and their families.

Tuesday 21 April 2015
5:45pm – 9:30pm

Event Cinemas, Westfield Parramatta
Ticket: $40

Flyer 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.
Social Policy Research Centre UNSW seminar - Experiences of women with disability in rural and war-affected Sri Lanka
Presented by: Dr Karen Soldatic, National Director of Teaching, Centre for Social Impact and a visiting delegation from Sri Lanka
Registration required 

12.00pm - 2.00pm 21 April 2015
UNSW Kensington

Supporting People with Disability to Access the Sex IndustryFamily Planning NSW Workshop - this one-day course is designed to enable service providers to sort fact from fiction, develop knowledge on duty of care, address barriers and make referrals when supporting a person with disability to use the services of the sex industry.
Conducted in partnership with Touching Base Inc.
Penrith on 21 April and other locations to follow.

Sexuality MattersThis new two-day course will provide you with strategies and resources to build your confidence and gain essential skills in how to proactively support people with intellectual disability in the area of sexuality and relationships.
NDIS webinar
Wednesday 29 April 2015 from 1pm to 2pm - online

Just a Bit ... Funny 
Riverside Theatres' Beyond the Square will present Just a Bit…Funny at the 2015 Sydney Comedy Festival. Comedians with and without disabilities and Auslan interpreters will work to deliver a night to squash stereotypes and misconceptions, entertain, challenge the norm and embrace difference.
5:30pm Sunday 3 MayThe Factory Theatre, Marrickville

Moving into a Person Centred Practice World
Council of Social service NSW (NCOSS) and IncludeUs symposium. Who should attend: CEOs, Learning and Development Managers, Operation of Human Services Managers/ Coordinators, Board members and organisational decision makers.
13 May 2015 - Newcastle West 
14 May 2015 - Woolloomooloo
14 May 2015 - Parramatta
15 May 2015 - Wollongong

3rd Down Syndrome National Swimming Championships
Short and long course events.

26 - 27 September 2015
Knox Aquatic Centre, Wahroonga, NSW

Contact: Lyn Foley
T: 0299 133 295

Tuesday, 14 April 2015

Survey about support workers

Dr Mark Brown works for Yooralla (a disability services organisation in Victoria) as well as being an Honorary Research Fellow at Deakin University.

He is currently conducting a survey about disability support workers on behalf of Yooralla, and in partnership with Deakin University, as part of the project The Valued Characteristics of Preferred Disability Support Workers. The survey is designed to be completed by people with disability (and their families) about support workers.

... We want to know if you have a great support worker and what you like about them.
M: 0477 721 257


Monday, 13 April 2015

National inquiry into Violence, abuse and neglect against people with disability in institutional and residential settings

Media reports from the Perth public hearing of the Senate Affairs inquiry into Violence, abuse and neglect against people with disability in institutional and residential settings make for confronting reading - so we can only imagine the horror that some people with disability in Australia have lived on a daily basis.

From the Inquiry's web page:
On 11 February 2015, the Senate referred the following matter to the Senate Community Affairs References Committee for inquiry and report
Violence, abuse and neglect against people with disability in institutional and residential settings, including the gender and age related dimensions, and the particular situation of Aboriginal and Torres Strait Islander people with disability, and culturally and linguistically diverse people with disability.
Submissions should be received by 29 May 2015. On 25 March 2015, the Senate granted an extension of time for reporting until 16 September 2015

Media reports on the first day of public hearings:

‘Voiceless’ disabled ‘raped, bitten, burned’ while in careRick Morton, The Australian, 11th April 2015
An inquiry into the abuse and ­neglect of people with disabilities has heard powerful testimony ­regarding the repeated rape of ­clients, physical and emotional stress and the fear of speaking out in a system where few are given voices ...

Disability abuse victims ‘have nowhere to go’
Rick Morton, The Australian, 10th April 2015
... The first public hearings in the federal Senate inquiry into violence, abuse and neglect against people with disability in institutional and residential settings will begin in Perth today and will hear stories so horrific they will match the royal commission into child sex abuse in scope, disability advocates say ...

'Harrowing stories' to come out of inquiry into disability abuse: Greens
Brendan Foster, WA Today, 10th April 2015
... Ms Siewert called for the Senate inquiry following a joint investigation between Fairfax Media and the ABC Four Corners program, which exposed the Victorian disability services organisation Yooralla, which continued to employ staff who had previous preyed on disabled clients.

Ms Siewert said the widespread abuse of disabled people in institutional and residential care had been ignored for too long ...
Steve Holland, Sydney Morning Herald, 10th April 2015
... the 'inquiry into violence, abuse and neglect against people with disability in institutional and residential settings' heard the abuse of disabled people is not limited to Victoria, with similar instances occurring across Australia ...

Added 14th April 2015:

Institutional culture fuels disability abuse, inquiry told
Rick Morton, The Australian, 14th April 2015
The abuse and neglect affecting the care of disabled people in Australia stems from the archaic institutions in which they were once housed, despite efforts by state and federal governments to close them, an inquiry has heard ...

'Embracing Success: A Teacher's Toolkit' - feedback

Our education conference Embracing Success: A Teacher's Toolkit was held in Sydney at the end of March, it was a great success.  Congratulations to Judy Davidson, Catherine Pedler and Sarah Tscherne from the Information Training and Support Team at DS NSW.

Over 90 teachers gathered at the Pullman Hyde Park, learning about the latest research and practical applications in educating students with Down syndrome. They came from both public and private
schools and included participants who had travelled from small rural townships as well as city dwellers.

We would like to thank all of our presenters for so generously sharing their research and experience over the two days. Our keynote presentations on Reading (Dr Kathy Cologon) and Mathematics (Dr Rhonda Faragher) were received with great enthusiasm.

Thanks to all the teaching and support staff who attended as well, many of whom indicated a desire to attend again. As one teacher said, "I found this very helpful, not only for teaching our student with DS but for all my clas

Educating Learners with Down Syndrome - research, theory and practice with children and adolescents. Eds Rhonda Faragher and Barbara Clarke
All those who attended the Education Conference are aware of the great work being done by Rhonda Faragher. You can visit her work in more detail, and the equally informative work of the other contributors, in this volume.

Friday, 10 April 2015

Weekend reading and viewing: 11th - 12th April 2015

How do children learn about difference?
Embracing Wade, 3rd April 2015
I want to tell you a funny story about what happens when two kids who are incredibly advanced for their age interact with a kid who is developmentally delayed. I want to tell you this story because,
A) it was absolutely hilarious.B) it’s a story of what happens when competition, ego and status don’t influence relationships ...
Walls of Glass
Abby Braithwaite, Hip Mama, 3rd April 2015
"You know, sometimes I think God just gives us what we can handle.”

Oh, I’d heard this one before. I get it a lot, in fact, from well-meaning people who aren’t sure what else to say when faced with a mom who is living their greatest fear, with a child who calls into question the very root of their human quest for perfection. I’m never quite sure why anyone’s god has to come into it ...

Day In the Life – and What a Day!

Mardra Sikora, Lessons More Special Than The Needs, 8th April 2015
... Today we got up just as the sun did. In fact, between the time Marcus got out of bed (slowly, as we are not “morning people”) and made his way downstairs... Marcus called out the window – “It’s too early to be day out!” Still, the sun kept rising anyway and we dressed and readied ourselves.

Of Catholic Schools, Down Syndrome, and Hospitality
Richard Becker, Catholic Exchange, 8th April 2015
I sat across the table from Miss Retseck, the principal of our parish grade school. It was spring, and we were discussing how I’d manage tuition for my kids the following fall. “You’ll have four Beckers on your hands,” I jested. And then, in passing, I added, “Of course, if Nicky wasn’t going to the public school, you’d have five.”

“The public school?” Miss Retseck shot back. “Why?”

“Well,” I faltered, “with Nick’s Down syndrome and all, we figured the public school was the best option – you know, for therapy and services.”

Miss Retseck’s eyes narrowed; her reply, solemn. “Why don’t you let
us try?” ...

To the Mom or Dad Who Told Their Child Not to Stare at Mine
Beth Hersom, The Mighty, 31st March 2015
... You shush your child and pull them away quickly, and I know you’re doing it to save my feelings, but my feelings are not so fragile and your action is doing real damage. You’re teaching your child to be afraid of what they don’t understand. I bet that most of you have a short conversation about diversity and not staring later; you’re good parents, after all. I would like to challenge you to have the conversation right there. Put a smile on. Say hello ...

Bus Stop Films Highlight reel

Kosciuszko to Coogee K2C - wrap

After 16 days and riding over 700kms Lance Mitchell has raised over $10,000 for Down Syndrome NSW. 

Lance cycled to the finish at Coogee on Sunday 5 April, where he was welcomed by Down Syndrome NSW members and friends. 

Young Alicia Carmody, who was the inspiration for Lance's ride,
with her mother, Bec, and Lance. Alicia's father, Cameron,
and Lance have been friends since early childhood.
“It's been a life changing experience to be involved in this initiative and I am extremely grateful of the opportunity to meet so many people in the Down syndrome community and share in their stories. Thanks for all your support,” Lance said.

We had two fantastic community dinners along the way with members, family and friends in Kiama and Tilba. We look forward to getting out to other regional towns soon. 

Thursday, 9 April 2015

Mental health: recent publications

Journal of Mental Health for Children and Adolescents with Intellectual and Developmental Disabilities: An Educational Resource
Volume Six, Issue One, March 2015
  • What will the NDIS do for subspecialty expertise and the multidisciplinary services for complex mental health problems of young people with intellectual disability? Implications from the Centre for Disability Study’s review of the Developmental Psychiatry Clinic by David Dossetor
  • Autism Spectrum Disorders: Implications from the changes in DSM-V by Louisa Carroll
  • The Medicine Cabinet: FAQs for Allergies and Anaphylaxis by Judy Longworth
  • The Community Room: Connecting schools, support agencies and families and transforming lives by Michelle Montgomery

  • Developmental Disabilities, Challenging Behaviour and Mental Health: Research to Practice and Policy– Conference Review by Rowan Keighran

  • Book Excerpt: Ten things every child with Autism wishes you knew by Ellen Notbohm
  • Equal before the Law: Towards Disability Justice Strategies by Terry Sarten

  • The Client Monitoring and Review System (CMRS) by Rachel Rowles and Lesley Whatson
  • Interview with Professor Julian Trollor

Psychiatric disorders in adolescents and young adults with Down syndrome and other intellectual disabilities 
Elizabeth Dykens et al, Journal of Neurodevelopmental Disorders (2015) 7:9
published online 1st March 2015
Relative to other aspects of Down syndrome, remarkably little is known about the psychiatric problems experienced by youth and young adults with this syndrome and if these problems differ from others with intellectual disabilities. Yet adolescence and young adulthood are particularly vulnerable time periods, as they involve multiple life transitions in educational, medical, and other service systems ... These preliminary observations warrant further studies on genetic, neurological, and psychosocial factors that place some young people with Down syndrome or other IDs at high risk for severe psychiatric illness.

Books and other resources

Naomi Lake with her first book (photo used with Naomi's kind permission)
Harmony the Forgetful Hen and the Lost Eggs
Naomi Lake, illustrated by Dave McCleery
Harmony has forgotten where she left her eggs. None of the animals have seen them, so it's up to Naomi to help her find them before they hatch.

Naomi is a young woman with Down syndrome who lives in Western Australia. She loves reading, dancing, drawing and looking after her chooks, which is where the idea for this story came from. A portion of all sales will go to charity.

You can order the book through the Harmony the Forgetful Hen Facebook page

Accessible Arts Newsletter - March 2015

New online resource for people with disability
Senator The Hon Mitch Fifield, 30th March 2015
The Abbott Government has today unveiled a new initiative to help people with disability access advocacy services, NDAP Provider Finder.

“The Commonwealth funds organisations to provide advocacy services to people with disability under the National Disability Advocacy Programme (NDAP),” Minister Fifield said ... read the full text of the Minister's media release here, with a link to the app.

Wednesday, 8 April 2015

Statistical model for live birth prevalence from 1900 - 2010 in US, and the impact of non-invasive prenatal screening

Debate about the science and ethics of prenatal testing dates from the 1970s, and is nowhere near done with recent developments in non-invasive prenatal screening, and its predicted impact on the numbers of babies being born with Down syndrome now, and predictions for the future:

Estimates of the live births, natural losses, and elective terminations with Down syndrome in the United States
Gert de Graf, Frank Buckley and Brian Skotko, American Journal of Medical Genetics, Vol 167, Issue 4, April 2015
The present and future live birth prevalence of Down syndrome (DS) is of practical importance for planning services and prioritizing research to support people living with the condition. Live birth prevalence is influenced by changes in prenatal screening technologies and policies. To predict the future impact of these changes, a model for estimating the live births of people with DS is required. In this study, we combine diverse and robust datasets with validated estimation techniques to describe the non-selective and live birth prevalence of DS in the United States from 1900–2010. Additionally, for the period 1974–2010, we estimate the impact of DS-related elective pregnancy terminations (following a prenatal diagnosis of DS) on the live births with DS ... Our results and our model provide data on the impact of elective pregnancy terminations on live births with DS and may provide a baseline from which future trends for live births with DS can be estimated.
The full text of this important paper is freely available online here.

Prenatal Testing for Down Syndrome: Understanding Two New Studies
Amy Julia Becker,, 3rd April 2015
... Over the course of the past decade, the prenatal testing industry has advanced and shifted. New screening tests called Non-Invasive Prenatal Screening (“NIPS”) have come on the market ... a new study ... concludes that this type of testing “had higher sensitivity, a lower false positive rate, and higher positive predictive value than did standard screening.” 
Another study came out this week ... that sheds some light on the significance of the cultural context of prenatal testing. This study analyzed decades of data about prenatal testing and the prevalence of live births of babies with Down syndrome in the United States. It concluded that the rate of live births of babies with Down syndrome is approximately 30% lower than it would be without prenatal testing, because some women choose to terminate their pregnancy after discovering their baby has Down syndrome. 
But even within the United States, the termination rates vary from population to population and from region to region ... This study suggests at least two conclusions. One, the United States as a whole contains many women who choose to have babies with Down syndrome, whether by forgoing prenatal screening tests, forgoing diagnostic tests, or choosing to continue a pregnancy with a prenatal diagnosis. Two, cultural factors play a significant role in determining who decides to terminate pregnancies once trisomy 21 has been identified ...
A sick, unethical cycle: prenatal testing for Down syndrome
Mark Leach, Down Syndrome Prenatal Testing, 3rd April 2015
So many items have cropped up in the past two weeks that here is a listing of all this news about Down syndrome prenatal testing. They lead to a sad conclusion ... But, maybe we can fix it this time with the administration of NIPS if enough people demand that laboratories and practitioners follow the guidelines and respect women seeking prenatal information by ensuring they receive ALL the information.

Soccer for kids aged 5 - 12: Carlingford

Tuesday, 7 April 2015

Organisations speak out on two immigration matters

Australian Cross Disability Alliance supports calls for the Department of Immigration to review decision relating to child with Down syndrome
Australian Cross Disability Alliance, 7th April 2015

The Australian Cross Disability Alliance supports calls for the Department of Immigration to review its decision to deny a visa to a child because she has disability, despite finding her parents fit to live and work in Australia. The Fonseka family from Sri Lanka plan to work in a Christian crisis centre in remote Australia and claim their visa application has been denied because their daughter, Eliza has Down syndrome[i].

National Ethnic Disability Alliance (NEDA) President Suresh Rajan said:  “People are being reduced to formulas and this effectively sanctions disability discrimination,”

“People are reduced to an equation, or net benefit approach in a process that determines eligibility across the potential or possible cost to a community because of one’s disability.  It fails to view these individuals as people who participate to the overall fabric of Australian life,” said Mr Rajan.

This case is not isolated. There have been reports of similar cases in the media[ii]. Damian Griffis, CEO, First Peoples Disability Network said: “Decisions such as these reflect poorly on us all as Australians, and unfortunately are indicative of a discriminatory attitude towards disability that still prevails,”

“If the system automatically discriminates on the basis of disability, then that system needs to be reviewed,” said Mr Griffis.

Matthew Bowden, Co-CEO, People with Disability Australia said: “Australia is a signatory to the UN Convention on the Rights of Persons with Disabilities and this case highlights how far we still have to go as a society. There was a national outcry recently relating to discrimination against a young child with Down syndrome, and this decision sends a message about the way we view disability and diversity as a nation.”

Carolyn Frohmader, CEO, Women With Disabilities Australia said: “The Australian Cross Disability Alliance encourages the Minister responsible to review this decision and to recognise the value and contribution of people with disability.”
Joint Statement of Disability Organisations Calling for the Release of People Living With Disability in Immigration Detention Centres
30th March 2015
Disability service providers from across Australia call for legislative change to end the detention of all people living with a disability and their families, following the release of the Australian Human Rights Commissioner’s National Inquiry into Children in Immigration Detention. 
People living with disabilities are some of the most vulnerable people in the world. The United Nations High Commission for Refugees estimates there are between 2.3 and 3.3 million forcibly displaced people living with a disability, for whom resettlement options are chronically limited ... read the full Statement and list of signatories here
National Ethnic Disability Alliance report:

Reports of abusive treatment of children with disabilities in schools

Reports of a Canberra child with autism being placed in a 'cage like device' in a classroom have provoked outrage, and claims that such abuse is neither isolated nor confined to children with autism, over the long weekend:

Children with autism caged and abused at school 
Rachel Browne, The Sydney Morning Herald, 2nd April 2015
Disturbing allegations have emerged about widespread abuse of children with disabilities in the classroom following the suspension of a principal at a school where a cage was built for a 10-year-old boy with autism, to control his behaviour ...

Response of peak body, Children with Disability Australia, 3rd April 2015:

  Read the full text of the CDA media release here

CDA's Issues Paper,  "Belonging and Connection of School Students with Disability" is available to download here.
CDA commissioned Dr. Sally Robinson and Julia Truscott of the Centre for Children and Young People at Southern Cross University to develop this issues paper, which raises important concerns and suggests some solutions in relation to the school experience of students with disability.
CDA is following the matter closely on its Facebook page.

Labor calls for disability commissioner after cage built for special needs student 
Shalailah Medhora, The Guardian, 5th April 2015
Labor is calling on the government to reinstate the role of disability commissioner, following the revelation a cage was built in a Canberra public school for a special needs student.

The Australian Capital Territory government has launched an independent inquiry into the case, which came to light on Friday, after a member of the school community made a complaint to the Human Rights Commission ...

Dan Harrison, The Sydney Morning Herald, 7th April 2015
Disability groups have backed calls for a broad inquiry into the education of children with a disability, following revelations an autistic Canberra school student was confined in a cage-like structure ...

Monday, 6 April 2015

Housing, the NDIS and more

Every Australian Counts campaign on housing  Every Australian Counts is currently encouraging people to speak about housing and the NDIS. There will be a meeting of disability ministers to discuss the matter in April.

The website describes existing housing options as:
  • Independent housing
  • Supported housing
  • Modified accommodation
  • Group home
  • Family home
Visit the Take Action: how do you want to live? page of the Every Australian Counts website to find out more and express your concerns and ideas.

Every Australian Counts, 18th March 2015
Over the last few weeks thousands of our supporters emailed the National Disability Insurance Agency and asked them to release the plan for housing under the NDIS.

The response from the Agency on this vital issue was disappointing, bureaucratic and hard to read. We thought we’d have a go at de-coding it for you because on the question of housing, people with disability and the NDIS, we need it to be crystal-clear ...

National Disability Services response to discussion paper on housing
National Disability Services (NDS) has released a paper, Changing the System, which is their response to the Social Housing in NSW discussion paper, published in November 2014

It recommends that the NSW Government establish a state-wide affordable housing levy to secure the revenue that is desperately required to create new stock.

NDS members also identified that careful and thorough planning between the NSW Government, the National Disability Insurance Agency (NDIA) and non-government disability service providers is needed in the following areas:
  • crisis services; 
  • vacancy management and allocation; and 
  • implementation of the National Disability Insurance Scheme (New South Wales Enabling) Act 2013. 
The availability of accessible and affordable housing for people with disability will be critical to the success of the National Disability Insurance Scheme (NDIS). The NDIA estimates that there will be 122,000 NDIS participants without access to affordable housing once the NDIS is fully implemented due to a lack of affordable and appropriate housing supply.

In addition to discussion and calls for action in providing affordable housing in the context of the implementation of the National Disability Insurance Scheme in Australia, debate about types of affordable/social/supported housing/accommodation continues around the world, with a suggestion for 'modern institutions' drawing fire in the US recently:

Calling it Modern Doesn’t Make It Good – No “Modern Asylum” Will Benefit This Generation of People with Disabilities
The Arc, 6th March 2015
Recently, Dr. Christine Montross made what The Arc believes to be a deeply flawed argument in favor of institutionalization for individuals with intellectual and developmental disabilities (I/DD), or as she put it, “a modern asylum”. Dr. Montross failed to address a number of key factors in her piece, but what was most disturbing was the complete lack of reference to the desires of individuals with I/DD ...

Friday, 3 April 2015

Weekend reading and viewing: long weekend edition 4th - 5th April 2015

In the wake of World Down Syndrome Day, and with a four day weekend (in Australia, at least) you might have time for some more reflective, and possibly more demanding, reading and viewing ...

On March 21st We Celebrate The Good Life
Mardra Sikora, Huffington Post, 16th March 2015
On March 21st we will celebrate World Down Syndrome Day. We celebrate because Down syndrome is one part of who Marcus is. Like many families who find themselves in an unexpected place -- it is not about making the best of it; it's about celebrating the best of it.

What I'd like to share this World Down Syndrome Day, with those of you who don't live in the place we do: It's not what you think ...

The Conundrum of Achievement and Disability
David Perry, How Did We Get Into This Mess, 27th March 2015
One response to ableism, eugenic ideology, or just plain ignorance is to tout the achievements of people with disabilities. Sometimes it can veer into inspiration porn or cuteness porn, but I've long thought that there's a bigger problem. 

If we define the worth of an individual by what they do, and then say - look, people with disabilities can do many things - what about those people who do less? Have we devalued them? By adopting the epistemology of "do" = "worthy," we implicitly reinforce disability hierarchies.

My son Nico is a wonderful, talented, smart boy. He has profound verbal delays in expressive speech, and in our society, expressive verbal ability tends to place limits on inclusion. If we presume achievement in neurotypical norms is the pathway to asserting value, Nico loses in that contest. Instead, we have to reject that epistemology and assert value based on broadening our perception of shared humanity ...

I want ball - a WDSD reflection
Garden of My Heart,  30th March 2015
I watched my Facebook feed fill up with cherubic smiles and triumphant stories describing the “more alike than different” aspect of Down syndrome. A few people passed around several blog posts touching on the idea that WDSD should reflect the full spectrum of Down syndrome, and not just those who attend college, drive cars, get married.
I watched all this unfold, watched the Day in the Life project grow, and felt silent. Stifled. I spent the day wondering where I fit into the parenting community, and where Rowenna fits in the circle of her peers with Down syndrome.
I felt much the same way I’ve felt since Rowenna started to veer off the “more alike than different” path, but a new feeling crystallized: I felt sad. A community that works so hard to make sure our children are included felt like a place we didn’t belong at all ...

Believe and live
21+21+21=? 29th July 2013
I love this article by Anita Cameron about different kinds of disability advocacy tools. She argues that nothing will ever get done without direct action. "Right on, right on," I say. I believe that too. Nice is not enough. But still, taking direct action implies we all know, and agree on, just exactly what we are fighting for. Right?

So what is it? What am I doing here and elsewhere? For me it all comes down to acceptance, meaningful inclusion, and equality.

None are currently a complete reality, but they all are the logical next step for humanity which evolves and progresses (and thus isn't on a crash course with some sort of an apocalypse). But most people don't seem to know that.We need vision.

So much about all of this is vision. So much about this is expecting more than we think will happen, faster than we think anything will happen. It is expecting a large scale societal change and behaving as if this large scale change is imminent. Practically already here. Happening as I shout ...

Is Anybody Listening to Disability Advocates?
Emily Ladau, The Disability Dialogue, 27th March 2015
... are the people who truly need to be reading our words the ones actually reading them?
... what about the millions of non-disabled people around the world who don't know about the daily lives of disabled people from the inside? The ones whose views of disability are colored by a range of misunderstandings and misconceptions? The ones who harbor deep-set prejudices against disability? These are the people we must connect with in our advocacy efforts in order to spark true change. Are we reaching them, or are we just talking to ourselves? ...

Setting The Scene For Self Management
Imagine More, 2014 (video, 48 m 12s)
Go into a planning meeting with your own vision on what a good life might look like for you or your loved one – because if you don’t you will most likely come out of that meeting with somebody else’s vision of what that life might look like. And you can almost be certain that it will not be the one you would choose ...

Lorna Sullivan gives a thought-provoking presentation about self management for Imagine More in the ACT.

Murmuration Dance Theatre: committed to diversity

Murmuration Dance Theatre is an exciting initiative based in Sydney (Marrickville) to be launched on 14th April, with workshops starting on 21st April:
Murmuration Dance Theatre is Sydney’s first professional integrated dance company, working alongside artists with and without disability to create new contemporary dance theatre works ... Murmuration Dance Theatre is committed to diversity and aims to create an environment that values and utilises the contribution of its people from different backgrounds, experiences and perspectives. We welcome Aboriginal and Torres Strait Islander people, and all people with a disability.
Murmur artists include Christopher Bunton and Jianna Georgiou - each artist's page includes a summary of their previous work, and a portfolio of beautiful images.

Explore Murmuration's excellent website for information about performances and other events already scheduled.

Thursday, 2 April 2015

Books and other resources

An Uncomplicated Life: A Father's Memoir of His Exceptional Daughter
by Paul Daugherty, Harper Collins, 2015
... Paul tells stories from Jillian’s mischievous childhood and moves to her early adulthood, tracing her journey to find happiness and purpose in her adult life, sharing endearing anecdotes as well as stories about her inspiring triumphs. Having graduated from high school and college, Jillian now works to support herself, and has met the love of her life and her husband-to-be, Ryan.

.... the parent learns as much about life from the child as the child does from the parent. Through her unmitigated love for others, her sparkling charisma, and her boundless capacity for joy, Jillian has inspired those around her to live better and more fully. The day Jillian was born, Paul says, was the last bad day. As he lovingly writes, “Jillian is a soul map of our best intentions”—a model of grace, boundless joy, and love for all of us
... book jacket notes
Small Talk Speech Therapy Newsletter
Good tips from a Newcastle speech therapy service

The two latest issues of the Canadian newsletter for direct support workers, Service, Support and Success, are now available online:

Like Ability: 10 Basic Skills That Promote RelationshipsService, Support and Success Vol 4, Issue 3, March 2015 
Conversation Pieces: Using Artwork and Art-Making to Enhance Communication for People with Intellectual DisabilitiesService, Support and Success Vol 4, Issue 4, April 2015
Link to back issues of Service, Support and Success on the Vita Living Services website, here.

Wednesday, 1 April 2015

People with Down syndrome online and in other media

Oliver Hellowell on BBC's "The One Show"
24th March 2015
Photographer, Oliver Hellowell appears on BBC's "The One Show" to discuss his photography which has, over the years, gained him thousands and thousands of followers on his social media sites.
Estelle Griepink, Lilydale and Yarra Valley Leader, 27th March 2015
Some of us dread exercise, but for Yarra Glen’s Adam Forbes, working out with his personal trainer is one of the highlights of his week.

It’s because Adam’s trainer, Vanessa Taylor, has tailored a special program that has helped him lose weight while having fun and gaining confidence ...
Shoko Kanazawa is a Japanese artist whose exhibition of calligraphy coincided with World Down Syndrome Day, and her presentation at the UN World Down Syndrome Conference in New York on 20th March 2015

Team player Carlton hires two new recruits
9News, 17th March 2015
For the past six weeks Daniel Palmer has been living the dream – working for the Carlton Football Club in the merchandise department. The 27-year-old, who has Down Syndrome, said he "loves" his job and now Down Syndrome Victoria is hoping other clubs will follow Carlton's lead and reach out to people with the genetic condition.

"Yeah I do love it. I'm very busy, every single Monday and Tuesday," Daniel said. 
Carlton CEO Steve Trigg said working with Daniel was a joy ...

Hola Barcelona
Connywenk Lifestyle Photography, 16th March 2015
German photographer, Conny Wenk, is well known for her beautiful photographs of people with Down syndrome and her work to raise awareness. This blog post features her teenage daughter, Juliana and her family enjoying a recent visit to the beautiful Spanish city of Barcelona.

Hampshire Chronicle, 18th March 2015
A Hampshire dancer has been selected to take part in a tour with a prestigious integrated dance company.Katy Francis, who has Down’s syndrome, is a regular at The Point’s Next Steps Dance Company and also acts and dances with Winchester’s Blue Apple Theatre.

The 25-year-old is now going on the road with Candoco Dance Company, a contemporary dance company working with disabled and non-disabled dancers She is one of 14 dancers chosen to join six of the company’s professional dancers to perform a piece by the French choreographer Jerome Bel ...

Julian Escallon - A Man of Many Passions (video, 6m 51s)
A Colombian -born young man with Down syndrome who now lives in Canada talks about his life and passions.

Latest additions to events pages


Gala screening of 'Cinderella' at Event Cinemas Parramatta. 
The Lady Mayoress of Parramatta, Kirsty Lloyd, has chosen DS NSW as one of her charities for 2015.  Strictly for grown-up princesses, the night will feature champagne, pamper packs and fabulous raffle prizes from local Parramatta businesses. The Down Syndrome NSW office has been located in the Parramatta area for 35 years and we are delighted that the Lady Mayoress has chosen to support our work across the state. Further details, including ticket price and how to book, will be announced soon, so stay tuned.
21st April 2015 - Event Cinemas, Parramatta

City 2 Surf 2015
Down Syndrome NSW is going big with City2Surf this year! We truly believe that with the right support, people with Down syndrome can lead a fulfilling and successful life. Josiah Bamber for example is a fit, active and engaged teenager with his whole life ahead of him. We think he is pretty awesome, so that is why he is our poster boy for this year’s City2Surf. He is currently in training to run the City2Surf in 2015. Why not join him? 
Sunday 9th August 2015 - Sydney City to Bondi Beach
The Scrapheap Adventure Ride is a unique fundraising event which involves motorcycle enthusiasts from all over the country purchasing a bike for no more than $1000 and doing it up for an adventure ride through the Aussie outback, all while raising money for people with Down syndrome.
25th - 27th September 2015 - to Urana, NSW

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.

Force Majeure - A New Project
Reminder: applications for this innovative dance project close 10th April 2015

Murmuration Dance Theatre - launch
Sydney’s first professional integrated dance company, working alongside artists with and without disability to create new contemporary dance theatre works. Community launch for a no frills celebration to mark the small beginnings of something big. This will be a chance to meet and greet the Murmur Team and learn more about our workshops, sharing’s and open days. We welcome everyone to join this event, it is an all ages, all inclusive launch. Workshops start from 21st April.
6.00-7.30pm Tuesday 14th April 2015 - Marrickville

I really want to make a change but I’m not sure how: strategies that help you hold on to the spark of change
In Charge webinar - There is a lot of change being talked about in our sector, with the NDIS being one of the biggest. Do you have a sense that this is an opportunity for something different, but are feeling uncertain or overwhelmed? Are you taking action but hitting barriers? Are you working with people with disability or families in this situation? This session brings you firsthand accounts of methods and strategies that will help you hold on to the spark of wanting something different.
Early bird registration until 10th April 2015
12.00 - 1.15PM AEST Monday 20th April 2015 - online

'Get More Skills' workshop
Hosted by Northern Intellectual Disability Health  at their Cremorne clinic. The workshop will support families to understand the upcoming changes to the disability support system. It will look at Choice and discuss skills you will need to move to the new system.
Registration is essential: My Choice Matters:, or 1800 144 653 or (02) 9211 2605
10 am - 1 pm 22 April 2015 - Cremorne

Is it Behaviour OR Is it Communication?
Family Advocacy Workshop join guest speaker Ann Greer for an informative and interactive day for both families and those who work with people with disability of all ages
Wednesday 29 April 2015 - West Ryde

Building Social Networks
Centre for Disability Studies - we invite support staff and a person they support to join us and together we will explore opportunities to socially connect with local communities.
30th April 2015 - Camperdown

Enriching Lives for people with disability
Family Advocacy - explore typical adult opportunities by considering the individual interests of your family member! We will look at strategies for helping a person with disability to have a good life and provide the advocacy tools to make this happen. Note: This is a practical workshop just for families and friends of a person with disability – including extended family.
Friday 8 May 2015 - Grafton
Wednesday 20 May 2015 - Queanbeyan
Thursday 21 May 2015 - Albury
Friday 22 May 2015 - Griffith

Ideas for Self Directing Supports
Resourcing Families - a free workshop that explores the what, who and how of self directing supports for people with disability and ideas for making the most of individualised funding. Presented by Meg Sweeney, who has directed her daughter’s own individualised funding around paid and volunteer works roles, living in her own home, connecting to community and employing her own staff.
Tuesday 5 May 2015 - Armidale
Thursday 7 May 2015 - Lismore
Tuesday 26 May 2015 - Broken Hill

Circles of Support
Resourcing Families - a free webinar that explores what circles are and how they can be useful, as a key strategy for getting more people involved to support the goals of a person with disability. Hear how a parent created a circle of support for her son and the exciting opportunities it created for his life.
10am -11.30am Tuesday 12 May 2015 online

When policies aren't enough: why abuse occurs in human services and what can be done about it
Foundations Forums - workshop presented by John Armstrong, for professionals, advocates and families who have a stake in addressing the issue of reportable incidents within a service context.
Thursday 14 May 2015 - West Ryde, Sydney

We are worth the investment - people with intellectual disability and the NDIS
NSW Council for Intellectual Disability Conference 2015
The conference is for people with intellectual disability, family members, service providers, professionals, advocates, policy makers and anyone else interested in the NDIS and people with intellectual disability. 
16th - 17th July 2015 - Waterview Bicentennial Park, Sydney

Making It real Together - 50th Annual ASID Conference
A platform for delegates to come together and explore what is means to convert recent advances in disability legislation and policy into real and meaningful changes for people with intellectual disability.The conference will bring together a range of stakeholders: people with intellectual disability and their families and support persons, coordinators, disability support workers, researchers from universities, health professionals and policy makers ...
11th - 13th November 2015 - Melbourne

Tuesday, 31 March 2015

One day discount offer on Proloquo2Go

If you are considering purchasing the Proloquo2Go app, you might want to check out AssistiveWare's offer of a  50% discount on Autism Acceptance Day, 2nd April. 

Check with AssistiveWare about the best time to order taking international time zones into account.

Research news and commentary #2 for 2015

Cardiometabolic Health For People With Intellectual Disability
Source: NSW CID E-News, March 2015
The Department of Developmental Disability Neuropsychiatry (3DN) at the University of New South Wales will be undertaking research into cardiometabolic health and people with intellectual disability.

NIH Updates Down Syndrome Research Plan: New Directions for Research to Improve the Health of Those with Down Syndrome
(US) National Institutes for Health, 8th December 2014
The NIH recently released Down Syndrome Directions: The National Institutes of Health Research Plan on Down Syndrome (PDF - 772 KB), an updated strategy to advance research related to Down syndrome ...

LuMind Foundation and Research Down Syndrome Merge to Create Leading Source of Private Funding for Down Syndrome Cognition Research
LuMind Foundation, 2nd March 2015
LuMind Foundation and Research Down Syndrome have combined resources and programs. Together, these organizations contributed nearly $12 million to stimulate Down syndrome cognition research, resulting in the discovery of multiple drug targets and supporting the initiation of four clinical trials ...

People With Down Syndrome May Actually Age Faster
Shaun Heasley, Disability Scoop, 26th February 2015
The inner workings of people with Down syndrome age much faster than typically-developing individuals, a new study suggests.

Various parts of the body age at an accelerated pace in those with Down syndrome, researchers say, possibly explaining the heightened risk for various medical issues among this population ...
University of Kansas News, 10th February 2015
The time has finally come to end the separation of special education and general education students, researchers at the University of Kansas argue in a new publication. Not only does research show that all students have higher achievement in fully integrated environments, but support and public policy for schools to make such a switch are coming into place as well ...

Influence of the Environment on Participation in Social Roles for Young Adults with Down Syndrome
Kitty-Rose Foley, Sonya Girdler, Jenny Bourke, Peter Jacoby, Gwynnyth Llewellyn, Stewart Einfeld, Bruce Tonge, Trevor R. Parmenter, Helen Leonard
PLOS One, 26th September 2014
... The purpose of this study is to describe the social participation of young adults with Down syndrome and examine its relationship with the physical and social environment ...
The full text of this Western Australian study is freely available online

Monday, 30 March 2015

Kosciuszko to Coogee (K2C): the home stretch

You can join in two events that will mark the final stages of Lance Mitchell's Kosciuszko to Coogee fund-raising ride for Down Syndrome NSW this week:

K2C - Kiama Dinner

Thursday  2nd April at 6:00pm

Down Syndrome NSW invites you to our community dinner at Blue Diamond restaurant at the Sebel Harbourside. The guest of honour is Lance Mitchell, who is riding from Kosciusko to Coogee to raise money and awareness for Down Syndrome NSW.

Down Syndrome NSW Executive Director Tracylee Arestides, Information, Training & Support Manager Judy Davidson and Community Engagement Manager Benjamin Chinnock will also be in attendance.

The Sebel Habourside - 31 Shoalhaven Street, Kiama NSW 2533There is a $10 pizza special on Thursday night or other dishes also available for purchase.

Lance is set to arrive in Coogee at around midday on Sunday 5th April,

We are organising a gathering to congratulate him. We will be meeting at 11am on Coogee beach. Look out for the Down Syndrome NSW flags. The Arden Lounge at the Coogee Bay Hotel is reserved from midday in case of bad weather.
Kosciuszko to Coogee, is an inspired fundraising idea to help raise money for the work of Down Syndrome NSW. Created by Lance Mitchell it starts on 21st March 2015 and involves 16 days of cycling from Mt Kosciuszko all the way to Coogee finishing on the 5th April.

Lance’s childhood friend since before Kindy, Cameron Carmody’s daughter Alicia is the source of inspiration for Lance’s ride. “I want to make a difference, I’m inspired by the work of Down Syndrome NSW and wanted to support them by creating Kosciuszko to Coogee.”

Alicia was born with Transient Leukaemia and Down syndrome. Lance reflects “”As one could imagine we extended our unconditional love and support, and did what we could to help. The first and most obvious step was to help Alicia through the chemotherapy and to stabilise her health as best as possible. This was a rough time for everyone, but particularly so for Cameron and Rebecca and their families, but little Alicia showed the gumption of a weathered soldier and pulled through the storm.”

Whilst clearly not a matter of life and death, the sudden and quite unexpected Down syndrome diagnosis nevertheless concerned Cameron and Rebecca greatly as they knew little about it. Lance recounts “They now found themselves riding a particularly daunting roller coaster, feeling quite alone. In the darkness of their isolation a lighthouse beam cut out from the horizon: Down Syndrome NSW.”

News and commentary on the NDIS (30)

The Commonwealth Department of Social Services and State and Territory Government Officials invite you to participate in our public consultation for a national framework on quality and safeguarding for the National Disability Insurance Scheme (NDIS).

The consultation paper was released by the Disability Reform Council on 16 February 2015. A copy of the paper including an easy English version, fact-sheets and framework summary are located on
The consultation will provide an overview of the quality and safeguarding framework, and you will have the opportunity to ask questions and provide feedback.

Details of the NSW consultation are as follows (other dates and locations nationally are here):
Sydney Monday, 13 April 2015
Newcastle Tuesday, 14 April 2015 
To assist us with venue and meeting management, we request that you register here.
If you require an Auslan interpreter or a hearing loop, please register and let us know which of these supports you require no later than 5 business days before the event. This will allow us to make the necessary arrangements to have these supports available.

Your participation will be valuable to us. We hope that you will join us as we would like to hear your thoughts on quality and safeguarding for the NDIS and how this may affect you.

If you cannot attend a public consultation, you may wish to make a submission or join the discussion online. The closing date for submissions and other contributions is 30 April 2015.

Clare Colley, Canberra Times, 27th March 2015
Bureaucratic "gobbledygook", a lack of respite and transport funding, and inexperienced planners are just some of the problems creating anxiety around the National Disability Insurance Scheme, participants have told a public hearing into the ACT roll-out.

While some had positive comments about the life-changing scheme, the bulk of the evidence before the joint parliamentary committee was negative with complaints of lengthy waits for assessment by planners with little knowledge of complex disabilities ...

Clare Colley, Sydney Morning Herald, 24th March 2015
People with a disability would be at risk of poor quality support and struggle to find a place with providers if service prices remain too low, a disability peak body warns.

Pricing has been just one of the problems identified in the rollout of the National Disability Insurance Scheme (NDIS) in the ACT, National Disability Services chief executive Ken Baker said ...

El Gibbs, Sydney Morning Herald, 23rd March 2015
... There are about 400,000 people with a disability in NSW, with up to 240,000 having a high degree of disability, according to the Australian Bureau of Statistics. With 140,000 people expected to be eligible for the NDIS, what will happen to the other 260,000 people? Where will they get support? ...
Jim Simpson, Every Australian Counts, 12th March 2015
A central aim of the NDIS is to provide equity of access to disability support. The terrible inequities of the past where access to disability support was based on rationing and queues should be banished. However, does the scheme as so far designed ensure equity of access for all people with disability or only for those people who have the awareness and understanding to seek out the NDIS or have family advocates to support them with this? Many people with disability are not in this position ...

NSW CID Member Speaks Out About Privatisation of NSW Government Disability Services
NSW Council for Intellectual Disability (blog), 23rd March 2015
This month, NSW CID Member Barbara Spode speaks out about the privatisation of NSW Government Disability Services and what she feels will be the result for her daughter India.

NSW CID most certainly agrees that the specialist services and professional skills which are particularly important for people with complex behavioural and health needs, must not be lost with the transfer of services to the non-government sector ...

Q2 Report
The NDIA reports every quarter on its operations. The Q2 Y2 report, published on 20 February, covers the period up to 31 December 2014.
To read the reports click here

NSW confirms bi-partisan approach to NDIS
Every Australian Counts, 25th February 2015
Bipartisan political support for the continuing roll out of the NDIS was strongly in evidence at the recent NSW conference of non-government support providers, National Disability Services ...

Fears young people in nursing homes will miss out on NDIS
Linda Belardi, Australian Ageing Agenda, 18th February 2015
Most of Australia’s 6,000 young people living in residential aged care will miss out on the National Disability Insurance Scheme as many lack the skills, advocacy and support networks to access the scheme, a senate inquiry has been told ...

NDIS transitions behind schedule NDIA quarterly report reveals
Clare Colley, Canberra Times, 20th February 2015
The number of Canberrans eligible for the National Disability Insurance Scheme has been dramatically underestimated, the latest progress report shows ...

National Disability Insurance Scheme: citizens' jury decides whether the billions are being well spent
Rachel Browne, Sydney Morning Herald, 20th February 2015
Participants in trials for the National Disability Insurance Scheme have told of both frustration and fulfillment with the multi-billion dollar program which is being rolled out to 400,000 Australians.

Sixteen randomly-selected trial participants have given their evidence to a citizens' jury of 12 people in a three-day hearing in Sydney organised by People with Disability Australia ...

Housing: the big sleeper
Every Australian Counts, 19th February 2015
Anyone with a disability will tell you that finding affordable, accessible housing is next to impossible. There are huge wait lists, too many young people in nursing homes and growing numbers of older parents despairing what will happen to their children when they can’t care for them anymore ...