Wednesday, 27 May 2015

From #StellasChallenge to TEDx Sydney Impact

People with disabilities continue to articulate their outrage at TEDx Sydney's #StellasChallenge (see this post from last week), to question the implementation of the initiative, and to stake a claim in its future:

What TedxSydney got wrong with #StellasChallenge
Jax Jacki Brown, Daily Life, 25th May 2015
... the wording of #Stellaschallenge seems to suggest that all she was advocating for was a change in attitudes. But if you have read Stella's work, or if you had known her as a friend, she made it clear, repeatedly, that she believed we deserved much more than an awareness campaign. 
Indeed, the act of "questioning what you think you know about disability" calls not so much for a literal inquiry of facts, but the dismantling of presumptions, stereotypes and misconceptions you may hold about people with disabilities, what our lives are like and even questioning the structures and institutions in society which have taught you to think that way. 
More importantly, it means questioning how we can address disability disadvantage and then actually implementing the changes that will improve our lives ...
... If the campaign isn't led by people with disability who understand what Stella's vision for an accessible and inclusive society really looked like, then it cannot be working towards the real inclusion and change Stella fought so hard for in her life ...

Doing justice to disability: the upside of TEDx’s Stella bungle
Gerard Goggin and Katie Ellis, The Conversation, 26th May 2015
We’ve made real progress in embracing disability as part of everyday life in Australia. But there’s a fair way to go, as the TEDx Sydney missed opportunity showed last week ...  
... Key to the disappointment and anger felt by many in response to #stellaschallenge is a palpable irony. TEDx Sydney calls for conversations – but doesn’t recognise that there are already many conversations, relationships, and media, attitudinal, and social transformations underway. So, rather than speaking, genuine listening is required – often the hardest thing to do. 
Fabulous as Stella’s TEDx talk is, it’s time to go beyond just resharing it. We need to really listen to it. We must acknowledge and support the many other voices of people with disabilities. 
TEDx Sydney should refocus its #Stellachallenge to offer media access, resources, and sorely needed distribution, so these voices can flourish, and be widely heard.
Click on the titles of each article to read them in full.

TEDx Sydney has responded quickly with a re-appraisal of their approach to consultation and inclusion, and by enlisting former Disability Discrimination Commissioner Graeme Innes:

Former Disability Discrimination Commissioner Graeme Innes supports TEDxSydney Impact
TEDxSydney News, 26th May 2015
On 21 May, TEDxSydney launched Stella’s Challenge, a project designed to continue the great work of Stella Young, as brilliantly articulated in her TEDxSydney talk from 2014. 
We launched this project with the support of the Young family, and after consulting with organisations, and individuals with disabilities. Since then, we have received significant feedback from the disability community, which we have taken on board. 
After further discussion with the Young family, we have decided to remove Stella’s name from this project. The community is still grieving Stella’s tragic death, and we recognise that it is too soon to be using her name. We will rename this project in consultation with people with disabilities. 
We remain committed to realising our original goal of working with the disability community and our TEDxSydney community, to advocate around the areas of accessibility, social inclusion, and attitudinal change. 
We continue to believe that any initiative must be led by people with disabilities. We are inviting thoughts and feedback to this end. Please email us directly at by 5 June. After this time we will review all ideas and suggestions, and work together on a plan of action. 
Former Disability Discrimination Commissioner Graeme Innes has agreed to join us in this process.

Tuesday, 26 May 2015

News and commentary on the NDIS (32)

 NDIS Citizens' Jury Scorecard
People with Disability Australia, 20th May 2015
The National Disability Insurance Scheme (NDIS) Citizens’ Jury Scorecard project was an innovative project led by People with Disability Australia in collaboration with Max Hardy Consulting, and with the support of the National Disability Insurance Agency (NDIA) between September 2014 and May 2015.

The project used deliberative democracy to involve Australian citizens who have helped fund the NDIS and those who have direct knowledge of the scheme as a participant, to evaluate the staged roll out of the NDIS in six trial sites.
A launch of the Citizens’ Jury Scorecard and a short documentary about the project took place at the NDIA’s national office in Geelong on Tuesday 19 May 2015 ...

Schedule for NDIS Pre-planning workshops, NSW

Calls for NDIS Hunter issues to be fixed before early rollout
ABC News, 22nd May 2015
A Newcastle disability service provider says while it is important the National Disability Insurance Scheme (NDIS) is rolled out as soon as possible, some challenges need to be addressed. A trial of the NDIS has been underway in the Hunter since 2013, but it will now be rolled out in the Nepean and Blue Mountains areas a year ahead of schedule ...

NDIS to be rolled out in NSW starting with Sydney's west, one year ahead of scheduleMazoe Ford, ABC News 19th May 2015
Children with disability in the Nepean and Blue Mountains areas in New South Wales will soon have access to the National Disability Insurance Scheme (NDIS), after an agreement between the state and federal governments was signed today ...

Disability scheme backlash: We’ve been sold a pup, says NT
Rick Morton and Amos Aikman, The Australian, 18th May 2015
The $22 billion National Disability Insurance Scheme is in danger of falling apart before it begins as the Northern Territory government calls for a dramatic redesign in ­remote areas and Western Aus­tralia becomes more convinced it should go its own way ...

Carers NSW resources on the NDISi
Carers NSW is developing a series of resources to help carers in NSW understand and engage with the National Disability Insurance Scheme (NDIS).

Every Australian Counts, 12th May 2015
John Della Bosca, Every Australian Counts Campaign Director said “The Abbott Government’s strong support for the NDIS cannot be questioned. They are funding the NDIS and in doing so transforming the lives of people with disability.

“It’s a business as usual budget when it comes to the NDIS. The exciting part is that the business of the NDIS will enable people with disability and their families to get the support they need when they need it.” ...

2015 Budget to Support NDIS Roll-out, Disability Employment and Carers
Senator The Hon Mitch Fifield, Assistant Minister for Social Services, joint media release with The Hon. Scott Morrison MP, Minister for Social Services, 12th May 2015
The Government will deliver support for the full roll-out of the National Disability Insurance Scheme (NDIS), improve employment services for people with disability and increase assistance for Australia’s 2.7 million carers ...

Disability NFPs facing ‘oblivion’ under NDIS changes
Lina Caneva, Probono News, 7th May 2015
Niche community service providers are facing “oblivion” as the window to adapt to NDIS changes closes, a leading Brisbane-based Not for Profit legal specialist has warned ...


Monday, 25 May 2015

Registration now open

Registration is now open for

NSW Council on Intellectual Disability annual conference
16th - 17th July 2015
Water View Function Centre, Bicentennial Park, Sydney

This exciting and important event will focus on the NDIS and intellectual disability. 

Key speakers include David Bowen (NDIA), Ron McCallum, Chris Bigby, Our Voice, Sen Mitch Fifield, Jenny Macklin, Karen Fisher plus many more.

Visit the conference website for all the details.

Disability Employment Framework - public consultation

The Department of Social Services has posted a consultation webpage for the Disability Employment Framework, announcing a 6 week consultation process, from today until 8th July 2015:
The Australian Government wants to get more people with disability into jobs. We see a future where people with disability, like other Australians, can enjoy the economic and social freedom work brings. 
A new taskforce has been established to review the entire disability employment system and develop a National Disability Employment Framework to boost employment rates for people with disability. 
The Taskforce is leading a national public consultation to better understand what is and is not working in the current service system and find ways to improve on this approach. 
We want to hear from people with disability, their families and carers, service providers, employers and peak bodies to explore ways to improve disability employment in Australia. 
An Issues Paper will be available shortly and will outline what the Australian Government is currently doing to help people with disability find and keep jobs. It will also pose questions to encourage discussion.
We are interested in your views on nine specific topic areas:
Workforce Participation of People with Disability
Different needs of People with Disability
Principles for Changes to Disability Employment Services
National Disability Insurance Scheme
Personal Helpers and Mentors
Australian Disability Enterprises
Disability Employment Services
Job Services Australia
Support for Employers.
Join the discussion by attending a public forum
We will also be seeking public submissions from 25 May 2015.
Contact us: Disability Employment Taskforce

Public consultation dates:
SydneyTuesday, 23 June 2015
NewcastleThursday, 25 June 2015
CanberraMonday, 29 June 2015
Sessions will be offered at separate times for people with disabilities and their families, employers, and for service providers.

For locations in other States, and for links to online booking, go to the public forum page on the DSS website

Friday, 22 May 2015

Weekend reading: 23rd - 24th May 2015

People with disability can express their sexuality
Carly Findlay, Daily Life, 22nd May 2015
The world rejoiced this week when 18-year-old Brisbane teenager Madeline Stuart's story of modelling went viral. Madeline (who prefers to be called Maddy) has Down syndrome. Last year she set out to develop a healthier lifestyle through exercise and eating less, and as a result lost 20 kilograms. She told her mother she wanted to be a model and now Maddy's profile has skyrocketed on social media ... However, when Maddy's picture was featured on social media, commenters suggested the teen was being too sexualised ...

Shaun Heasley, Disability Scoop, 13th May 2015
Self-advocates will take a role in training police on interacting with people who have developmental disabilities under a first-of-its-kind law. Maryland Gov. Larry Hogan signed the law Tuesday establishing the Ethan Saylor Alliance for Self-Advocates as Educators ...

ISPD: not that serious of a concern after all
Mark Leach, Down Syndrome Prenatal Testing, 13th May 2015
Over at the Prenatal Information Research Consortium (PIRC) blog I have a post noting the “sea-change” in the International Society for Prenatal Diagnosis’ position on noninvasive prenatal screening. Here are a few other notes from the ISPD’s updated statement on NIPS ...

Chris Kaposy, Impact Ethics, 19th May 2015
Chris Kaposy challenges the need for further developments in prenatal testing for Down syndrome ...

... There is an inconsistency between the lived experience of people who have Down syndrome and the corporate arms race to develop new and better means for identifying fetuses with Down syndrome ...

His words, not mine
Dave Hingsburger, Rolling Around in My Head, 15th May 2015
... "I can't get married until my mother dies, she won't let me have a girlfriend, she gets mad when I talk about it. I love my mother. I don't like the feeling, sometimes, that I'm waiting for her to die so I can be a man" ...

The Spectrum of Down Syndrome

Our Version of Normal, 31st January 2015
Every single day I hear references of someone being on the spectrum. Obviously being on the spectrum refers to being on the autism spectrum, but for a while now I've come to believe it might behoove the Down syndrome world to have a reclassification of Down syndrome into a Down syndrome spectrum ...
Garden of My Heart, 30th October 2014
Truth be told, one of the hardest things about the last year has been watching Rowenna slowly slip away. Where she used to want hugs, seek comfort, imitate signs and sounds, we watched her retreat into her mind and didn’t know how to help her ...

Accessible Arts Newsletter, May 2015

Stella's Challenge - or is it?

TEDx Sydney 2015 yesterday announced, amidst some fanfare, #StellasChallenge, '... a major initiative designed to significantly contribute to the social inclusion of people living with disabilities.' They obviously did not anticipate the swift, incisive and highly critical response from people with disabilities. Many of the late Stella Young's friends and peers say that Stella herself would not have endorsed what they see as the frank ableism embodied in the approach the well-intentioned, but sadly misjudged, initiative has adopted.

Note: late on Friday 22nd May, TEDx Sydney added to their announcement,  a response to the feedback:
Since the campaign launched we have had significant feedback on social media, which has raised important issues and concerns. We acknowledge the comments and are taking the feedback on board. There are lots of voices in the disability community, and we would very much like to continue consulting and collaborating with the sector. We’ve been speaking with organisations and individuals with long track records of incredible work in this area, working with them to shape and define this project, and we would like to hear from more. To talk to us or get involved, please contact us directly
And an update on Saturday 23rd May, from TEDx:
Even if it wasn’t in the way we had intended, the debate, engagement and activism in and around disability that followed the launch of Stella’s Challenge at TEDxSydney 2015 is a critical conversation to have. Over the last few days, we have had a number of extremely productive conversations with our critics, and we are now working with them to continue developing andrefining the most effective ways forward. We are also continuing consultation and discussion with the organisations and individuals in the disability sector with whom we have been collaborating from the beginning. We hope that in this way we will be able to re-set Stella’s Challenge to be a project that represents all of our hopes and expectations. 
We sincerely apologise for any hurt or anger we have caused and acknowledge that we got it wrong. Our goal remains to mobilise our large, creative and resourceful community to helpcontinue the important work of Stella Young in the areas of social inclusion and accessibility for people with disability. We would like to hear from you about how you would like to see Stella’sChallenge develop, and we would love to have you involved. Please email us directly at by Friday 5 June, after which time we will be able to review all ideas and begin to formulate an action plan together. 
We would like to thank everyone we have spoken to for their guidance and thoughtful feedback, and look forward to ongoing conversations and collaboration.

Josephine Maguire-Rosier, Community Run, 21st May 2015

Dear TedXSydney,  
Make #StellasChallenge about finding and implementing real, practical solutions for the real problems faced by people with disability, led by people with disability. We need education, employment and the opportunity to make our own decisions about how we live our own lives - not well meaning conversations with prying strangers. 
Why is this important? Stella Young irreversibly changed the landscape of disability politics. She pioneered phrases like "inspiration porn" and reminded us that "you get proud by practising". She was firm in the belief that her disability shouldn't define her, and that she should be able to control the conversation she has with people about it ... Read the complete letter to TEDx here
Social media, particularly Twitter, is alive with constructive, but unapologetic criticism. Alice Wong has compiled a collection in Storify that explain the outrage:
Melissa Davey, The Guardian, 22nd May 2015
Prominent figures from the disability sector have responded angrily to a campaign launched by the ideas festival TEDxSydney, which is being promoted using the name of renowned disability activist and journalist, Stella Young, who died last year ...

Thursday, 21 May 2015

Pain in children with intellectual disability - new UK guidelines

Assessing pain in a child with Down syndrome and other intellectual disabilities, coupled with communication impairment, can be very difficult and stressful - these new UK guidelines for parents are worth filing in your home health records. They are generously provided free to download:

Pain in children with severe intellectual disability: A Guide for Parents
Cerebra (UK), 2015
This guide will help the parents of children with severe intellectual and/or communication difficulties understand how pain may affect their child. 
It does so by explaining possible causes of pain in children with intellectual disability, presenting information about how pain may be shown by children who cannot tell us they are in pain and discussing the effects of untreated pain.

Founded in 2001, Cerebra is a unique national charity that strives to improve the lives of children with neurological conditions, through research, information and direct, on-going support.

Living with neurological conditions can make life very hard, not just for the child, but for their family too. At Cerebra, with the help of our supporters, we aim to make it easier ... About Cerebra

Representation on PM's advisory panel

Women with disabilities to be represented on Prime Minister's advisory panel to reduce violence against women
Women with Disabilities Australia, 15th May 2015
WWDA is delighted to announce that WWDA life member and former WWDA President, Sue Salthouse, from the ACT, has been appointed to the Prime Minister's Advisory Panel to Reduce Violence Against Women. WWDA has strongly advocated for the need to ensure women with disabilities are represented on this important national Advisory panel, and we welcome the Prime Minister's appointment of Sue to the Panel ...

Wednesday, 20 May 2015

NSW Carers Awards 2015: nominations now open

More than one in 10 people in NSW are carers. Carers can be anyone including parents, partners, brothers, sisters, friends, sons or daughters. They provide unpaid support to those who need it because of a disability, mental illness, chronic health condition, dementia or ageing.

The NSW Carers Awards acknowledge and celebrate the significant unpaid contribution carers make to the person (or people) they care for and to the community.

A carer is not paid a wage or salary, although they may receive a pension or allowance for their caring role. Carers can be employed, at school and/or have a range of other commitments at the time they take on the role of caring.

People with Down syndrome online and in other media

Nikki Fox, BBC News, 19th May 2015
PKN are punk rockers with learning disabilities representing Finland at the Eurovision Song Contest. Tonight they're in the semi-final, but they're fairly confident, because they're one of those tipped to win. I've been to Helsinki to meet the band and visit the remarkable arts centre which has been central to their success ...

Is the world ready for a model with Down syndrome?by Jorge Rivas, Fusion, 18th May 2015
Madeline Stuart has been posting pictures on Facebook, Instagram, andTwitter to get the attention of casting agents. Stuart, 18, says she wants to be a model on ad campaigns and walk down fashion runways to help “change society’s view of people with Down syndrome” ...

Man with developmental disabilities opening coffee shop
Brittni Smallwood, WIVB 4 News, 10th May 2015
George Augstell is living out his dreams. The 27-year-old has down syndrome and will own and operate a new coffee shop in Niagara Falls.

“I’m so happy right now,” Augstell said ...

'It's hard to find a job when you have Down's syndrome' (video: 18 m)
Victoria Derbyshire, BBC 2, 7th May 2015
People living with Down's syndrome tell Victoria Derbyshire there are still too many barriers to finding a job. The charity Mencap says eight out of 10 working age people with a learning disability could work but less than two in 10 are in employment. James Hamilton told the programme he was disappointed to be told "thank you but goodbye" once he had completed some work experience ...

May Issue Cover Shoot
Bron Bates, Child Magazine, 29th April 2015
In case you missed this link when it was first posted a couple of weeks ago.

Tuesday, 19 May 2015

Statement from Down Syndrome Australia - Baby Gammy Special Appeal Fund

Statement in support of Hands Across the Water
Ruth Webber, CEO. Down Syndrome Australia, 19th May 2015
Down Syndrome Australia shares the concerns expressed today by Hands Across the Water at the Farnell family attempting to access the funds held in the Baby Gammy Special Appeal Fund. 
DSA fully supports the Fund and arrangements put in place by Hands Across the Water for Baby Gammy’s future care. Many members of DSA have supported the Fund – and they did so to contribute to the care of Baby Gammy. 
“Like Hands Across the Water, Down Syndrome Australia was moved by the generosity of those from all around the world that donated to the Fund. Hands Across the Water has done a remarkable job putting in place a long term plan to support Baby Gammy.” 
“We would be really concerned at any move, legal or otherwise, that threatened the resources that were specifically donated to support Baby Gammy into the future. After all that is the sole purpose for which donations to the Appeal Fund were sought.”

2016 Down Syndrome NSW calendar: call to members for photos

It's time to get your cameras clicking to be included in next year's Down Syndrome NSW Calendar. Send your image files via email to

It is preferred that you send JPEG files that are suitable to print, i.e. high resolution.

Monday, 18 May 2015

Latest addition to 'events' pages

Down Syndrome NSW events:

Down Syndrome NSW in partnership with Down Syndrome Association of Queensland 
South Sydney Rabbitohs Vs Gold Coast Titans match on 
Saturday 30 May 2015 at 3pm.

People with Down syndrome from both NSW and Queensland are invited to be a part of the action on the day, either running onto the field with the players or holding a flag on the sidelines.

Bookings for the game and t-shirts are through Down Syndrome Association of Queensland.
Registration Form HereCompleted form to be returned to

'Learn To Surf' morning 
Down Syndrome NSW is proud to partner with Hayden Cox and the Haydenshapes team.  Free.
Sunday 31st May 2015 - Bondi

For more details on this event, please contact Sarah at or phone the Down Syndrome NSW office on 9841 444.
Click HERE to download the registration form. Bookings must be finalised by Monday 01 June
Please note that minimum numbers apply and that this is a members only event.
Friday 31 July – Sunday 02 August 2015 Hunter Valley

Other events:

UNSW Social Policy and Research Centre Seminar Series, presented by Dr Brendan Long from Charles Sturt University and Gordon Duff from National Disability Services (NDS). The focus on the National Disability Insurance Scheme (NDIS) as purely a social policy reform, which sits on the expense side of the government ledger, entirely misses the critical point that the NDIS is also a significant economic reform which will deliver substantial benefits in terms of productivity and workforce participation in particular.
12:30pm - 1:30pm Tuesday 26 May 2015 - UNSW Kensington

Junction House Band Gig
Come along to a wonderful night of drama and song!
Cabaret Chaos is a group of performers made up of the Junction House Band and actors from the former Junction House Drama Group. This will be the last time the Junction House Band performs!
DS NSW member and talented musician, Nina Gotsis, has performed with the Junction House band for a number of years.
Dinner available at the venue. Free admission
6pm onwards, Friday 5 June - Bronte Legion Club, 213 Bronte Rd, Charing Cross

Murmuration Dance Theatre
Studio Open Day

FREE EVENT! Observe a professional rehearsal of Bower Birds in progress, then stay and chat to the artists. Ask them about their process and discuss your observations with them.
Friday June 19, 2:00pm - 5:00pm - Marrickville

Studio Sharing and Workshop
Studio Sharing - 6:00pm - 7:30pm
An interactive sharing where guests are invited to observe the work in progress and engage in a guided feedback session. The sharing provides insights into Bower Birds and helps the Murmur Artists to reflect on their work. This will be followed directly by a dance theatre workshop.

Workshop - 7:30pm - 8:30pm
Directly following the Studio Sharing, participate in a dance theatre workshop where you can explore specific task’s used during the creative process for Bower Birds. The workshop tasks will help participants gain a deeper understanding of how the movement demonstrated in the Studio Sharing was devised.
Tuesday June 23, 6:00pm - 8.30pm - Marickville

NDIS Citizens' Jury - the Scorecard

People with Disability Australia is officially launching its NDIS Citizens' Jury Scorecard (from the jury process held in February) tomorrow (19th May) - you can read it online now, and if you are very quick, you can submit a question for the launch panel. This notice if from PWDA on Facebook:
Have you had a chance to read our NDIS Citizen’s Jury Scorecard yet? Click here to read the verdict and let us know your thoughts. 
Remember, you can also send us a question you would like our panel to answer at the official launch of the Scorecard on Tuesday. 
You can email your question to post your question in the comment section on PWDA's Facebook page, or tweet it to us on Twitter using the ‪#‎NDISJury‬ hashtag.

For more information about the Citizens' Jury, our response to their findings and a word document version of the scorecard, click here  and please note questions must relate to citizens’ jury process or findings of the jury outlined in the scorecard.
Norman Hermont, ABC News, 16th May 2015
The National Disability Insurance Scheme citizens' jury has found it is already giving people living with disabilities more independence and an improved quality of life, but there is room for improvement in its roll out ...

Friday, 15 May 2015

Weekend reading and viewing: 16th - 17th May 2015

The dignity of Hayden’s risk
Thea Calzoni, Every Australian Counts, 11th May 2015
Hayden McLean can’t live with his family, and nor should he be expected to at 36 years of age. He needs his space for his various projects such as French knitting and drawing. He likes to be free and explore the world around him. Some have called this ‘absconding’. His mother calls it “accessing the community” ...

Cap and Gown
Emma's Blog, 11th May 2015
... Micah reminds me over and over again that this work -- this work of creating the beloved community -- must involve intentional and authentic inclusion. Micah is who he is because inclusion (and Micah!) is working at its very best. ...

I am disabled, my life has value
9th May 2015
A video response to Peter Singer

Robert Virtue (with Jill Emberson) 1233 ABC Newcastle, 11th May 2015
A photography exhibition titled 'Outing Disability' is giving Novocastrians a glimpse into the lives of people with a disability who have come out ...

Jerome Archambault, Montreal Gazette12 May 2015
In the French-language press recently, adaptive measures in place for post-secondary students with learning disability or attention-deficit disorders have been challenged. The Quebec Association of Post-Secondary Students with Disabilities would like to share its perspective and bring some nuance to the discussion ...

Employment news from the budget and elsewhere

Budget money to help people with intellectual disability to enter the workforce
Michael Edwards, AM (ABC Radio), 15th May 2015
Disability services groups are welcoming an increase in funding aimed at helping intellectually disabled people enter the workforce ...

2015 Budget launches disability employment package
Every Australian Counts, 14th May 2015
Many people with disability are keen to work but finding the right job and overcoming discrimination can be a challenge. Will new measures for disability employment announced in the budget be enough? ...  
(This link was also posted here in a compilation of links about the 2015 Federal Budget)

Job program for Indigenous people with disability
ProBono Australia, 11th May 2015
A new program aimed at assisting Indigenous people with disability access and participate in tertiary education so they can gain meaningful employment has been launched in Cairns ...

Employees with disability working in ADEs caught in back-pay standoff
Josh Bronstein, The Sydney Morning Herald, 12th May 2015
... The Court found that BSWAT breached the Disability Discrimination Act because it reduced "wages to which intellectually disabled workers would otherwise be entitled by reference to considerations which do not bear upon the work that they actually do" ...  As it became clear that the government was intent on refusing to pay the back-pay it owed, further legal action in the form of a class action was instituted by a team of lawyers acting pro bono. I am one of those lawyers. Undeterred, the government continued with its cat and mouse strategy to chisel the disabled workers. It tried to cut a deal directly with them to settle for up to half of their back-pay. Urgent court intervention skittled that tactic ...

'It's hard to find a job when you have Down's syndrome'
Victoria Derbyshire, BBC 2, 7th May 2015
People living with Down's syndrome tell Victoria Derbyshire there are still too many barriers to finding a job. James Hamilton told the programme he was disappointed to be told "thank you but goodbye" once he had completed some work experience.

Shanna Bellot, Huffington Post (blog), 1st April 2015
Something curious is happening in Corporate America. Business leaders are discovering a whole new source of talent they never realized existed: people with autism and intellectual and developmental disabilities. Of course, this population has been there all along. But now that their bottom-line value is beginning to be understood ...

Thursday, 14 May 2015

2015 Federal budget (2): analysis of impacts for people with disability

Two days after the deliver of the 2015 Federal budget, people with disability, their carers, advocates and service providers are still evaluating the potential impact of measures announced (or not):

Budget 2015: more support for carers
Every Australian Counts, 14th May 2015
There are 2.7 million Australians providing care for one or more family members or friends, including people with disability – navigating their way through what can be a confusing and time consuming labyrinth of government departments.

So, it’s good news the Federal Government has announced it will invest $33.7 million over the next four years in an Integrated Plan for Carer Support Services, which will streamline and co-ordinate services for the nation’s carers ...

Carer Support Services - National Carer Gateway
Australian Dept of Social Services, 13th May 2015
As announced on 12 May 2015 as part of the 2015-16 Budget, the Australian Government has committed $33.7 million over four years to establish a National Carer Gateway. The National Carer Gateway will be implemented to help carers access information and support help them maintain their caring role and is the first step in a longer term plan to better support carers.

Work on an Integrated Plan for Carer Support Services (the Plan) has commenced and will reflect Australian Government priorities for carers. The purpose of the Plan will be to outline practical actions to recognise, support and sustain the vital work of unpaid carers ...

14th May 2015
The Australian Education Union’s (AEU) federal president, Correna Haythorpe, has accused the Abbott Government of having “abandoned” its promise to students with disability by not funding disability loading for schools ...

Disability Orgs Cautiously Optimistic

ProBono Australia News, 13th May 2015
Disability organisations have welcomed a more “moderate” Federal Budget but have expressed their concerns that 12 specialist organisations representing over 200,000 Australians with disability have not been funded.

The Australian Federation of Disability Organisations (AFDO) said reforms to employment and the ongoing commitment to the rollout of the National Disability Insurance Scheme (NDIS) were particularly welcome ...

Arts Access Australia's Reaction to May 2015 Federal Budget
13th May 2015
Arts Access Australia is urgently seeking reassurance from Senator George Brandis, Minister for the Arts, that current and future programs aimed at ensuring the human right of people with disability to access the arts be protected, following shock arts funding cuts to the Australia Council for the Arts in Tuesday night’s Federal Budget ...

National Disability Insurance Scheme, 13th May 2015
The 2015-16 Budget provides funding for:
  • A new ICT system that will meet the needs of the NDIA as it rolls out across the country.
  • A limited roll-out of the NDIS in the Penrith and Blue Mountains areas from July 2015
  • Transfer of the Sector Development Fund from the NDIA to the Department of Social Services.
The 2015-16 Budget includes measures to support the delivery of the NDIS as it rolls out across the country and a measure for early transition beyond the trial in New South Wales ...

Health information from the mainstream

While we value specific research and experience in the health care of people with Down syndrome, we also have much to gain from paying attention to broader information from the general population that might apply to the specific combinations of problems that people with Down syndrome are likely to encounter. The Adult Down Syndrome Clinic, in Chicago, through both their blog and Facebook page, sometimes draw inferences from mainstream health research relating to their patients with Down syndrome:

Sleep and mental health: Adult Down Syndrome Clinic Facebook post, 13th May 2015 
Refers readers to a paper on the relationship between sleep and mental health, considering the higher than usual frequency of sleep disorders (such as sleep apnoea) in children with Down syndrome.

Sleep apnea is more common in people with Down syndrome. Alzheimer disease occurs at a younger age and may be more common. We have often wondered if chronic, untreated sleep apnea could contribute to the development of Alzheimer disease from chronic oxygen deprivation during sleep, chronic sleep deprivation or other factors ...

Discusses the possible implications of a mainstream study of vitamin D levels and depression, noting that Chicago residents might lack exposure to sunlight because of their latitude. Somewhat counter-intuitively, low vitamin D levels are common in Australia, possibly because of our adherence to sun-safe practices designed to protect us from melanoma.

Wednesday, 13 May 2015

Free 'Learn to Surf' morning

Down Syndrome NSW is proud to be partnering with Hayden Cox and the Haydenshapes team for a 

'Learn To Surf' morning at Bondi Beach

Sunday 31st May
Meet at 10am at Lets Go Surfing Bondi to be fitted with a wet-suit and board. The lesson will run from 10:30am - 12:00pm.

Your instructors for the morning will be Hayden Cox, Pama Davies and other Haydenshapes volunteers.

Please RSVP for this event via email:

You can share this event on Facebook with your friends.

Hayden Cox is arguably the most well-known up and coming young surfboard designer on the planet. At 31 years old, Hayden's innovative high performance shortboards are being ridden by some of the best surfers in the world, and his designs are drastically helping advance the riding of everyday surfers.

2015 Federal Budget (1)

If you have attended to any media in the last 12 hours or so, you know that today is all about the 2015 Federal budget, delivered last night. Responses to budget measures that will specifically affect people with disabilities, their families and the services that support them are emerging, and we can expect more detailed analysis of both budget measures and their timing over the next few days:

2015 Budget: modest but welcome measures for disability

People with Disability Australia, 12th May 2015
PWDA welcomes the 2015 Budget commitments to a modest but promising package of initiatives to address employment participation of people with disability ...

Budget 2015 summary
Inclusion Australia, 12th May 2015
The information below outlines the announcements that accompanied the Budget 2015. Over the coming weeks we will be publishing the details related to each measure ...

Budget fails students with disability
Children with Disability Australia, 12th May 2015
The 2015 Budget has failed to provide certainty for students with disability in Australia.

In 2014 an interim loading for students with disability was implemented. The interim loading was rolled over in 2015 and only maintains existing levels of provision. The 2015 budget does not deliver any increase in funding for students with disability, so students around the country will continue to miss out in 2016. The impacts for young people denied access to a quality education are life-long.

Stephanie Gotlib, CEO of Children with Disability Australia (CDA) said: “Without an increase in the disability loading from the Commonwealth Government, schools around the country cannot provide adequate support for all students with disability and the many who are missing out now will continue to miss out.”

A clear commitment was made by the Abbott Government prior to the 2013 election to increase funding for students with disability as part of the National Education Reform.

Ms Gotlib said: “A typical school experience for students with disability involves limited choice of school, discrimination, bullying, limited or no funding for support and resources, inadequately trained staff and contending with a culture of low expectations,”

“These failings have become entrenched in the education system and the urgency of delivering system wide solutions is now acute. It is crucial that we have adequate Commonwealth funding to implement the necessary reform so that Australia can provide opportunities for all students.”

Response from the I give a Gonski campaign on Twitter, 12th May 2015

2015 Budget – NDIS roll-out funded in budget
Every Australian Counts, 12th May 2015
John Della Bosca, Every Australian Counts Campaign Director said “The Abbott Government’s strong support for the NDIS cannot be questioned. They are funding the NDIS and in doing so transforming the lives of people with disability.

“It’s a business as usual budget when it comes to the NDIS. The exciting part is that the business of the NDIS will enable people with disability and their families to get the support they need when they need it.” ...

2015 Budget to Support NDIS Roll-out, Disability Employment and Carers

Senator The Hon Mitch Fifield, Assistant Minister for Social Services, joint media release with The Hon. Scott Morrison MP, Minister for Social Services, 12th May 2015
The Government will deliver support for the full roll-out of the National Disability Insurance Scheme (NDIS), improve employment services for people with disability and increase assistance for Australia’s 2.7 million carers ...

Tuesday, 12 May 2015

'Where Hope Grows': movie review

The much anticipated movie,  Where Hope Grows, starring David de Sanctis is premiering in the US on 15th May. If you see any mention of it coming to cinemas in Australia, please let us know, and we will be watching out for it as well. International Down Syndrome Coalition staff were impressed by their recent preview:

'Where Hope Grows': A ReviewBeth Sullivan, Huffington Post, 11th May 2015
... Several on the IDSC staff noted their expectations going into the movie were little more than hoping to watch a sweet movie starring an individual with Down syndrome -- but were unprepared for the strong message, excellent acting and moving moments...

NSW CID on NDIS Quality and Safeguarding Framework

NSW Council on Intellectual Disability is the peak body representing the interests of NSW citizens with intellectual disability. This position statement  is based on:
  • the experience of people with intellectual disability and their families, 
  • NSWCID’s long experience in systemic advocacy, and 
  • discussion at our National Roundtable on Quality and Safeguarding and People with Intellectual Disability, held in March 2015:

Position Statement - NDIS Quality and Safeguarding Framework
NSW Council on Intellectual Disability, 6th May 2015

NSW CID calls for a very rigorous frame work as:
  • People with intellectual disability are over 60% of NDIS participants and are very vulnerable to abuse and neglect 
  • Capacity for choice and control will not just happen for people with intellectual disability. It should gradually grow over time 
  • The implementation of the NDIS is an enormous undertaking.
These factors point to the need for a very rigorous quality and safeguards framework in the early years of the NDIS.

The spending on a rigorous framework would be an investment that would yield considerable budgetary savings over time.

Monday, 11 May 2015

Rabbitohs v Titans Charity Match: 30th May 2015, Gold Coast

Down Syndrome NSW is thrilled to partner with Down Syndrome Association of Queensland to be a part of the South Sydney Rabbitohs Vs Gold Coast Titans match on Saturday 30 May 2015 at 3pm.

People with Down syndrome from both NSW and Queensland are invited to be a part of the action on the day, either running onto the field with the players or holding a flag on the sidelines.

This is a great opportunity to raise awareness of people with Down syndrome and celebrate their place in the community.

Tickets for the game are $20 which includes a commemorative t-shirt.

Bookings for the game and t-shirts are through Down Syndrome Association of Queensland.
Registration Form Here 
Completed form to be returned to

So, for a daytrip to remember, hop on a plane to the Gold Coast and join in the fun. Flights on Webjet start from $49.

Go the mighty Rabbitohs!

Sunday, 10 May 2015

Friday, 8 May 2015

Weekend reading: 9th - 10th May 2015

Coming along in leaps and bounds
Laura Cox, Daily  Mail (Australia), 5th May 2015
Born with Down’s Syndrome, Archie Aspin was told he would never manage to keep up with his peers. But at the age of just three, he is already progressing in leaps and bounds. His mother Amanda has credited ‘baby ballet’ classes with sending her little boy’s confidence soaring, and says Archie now walks, jumps and hops – skills once thought too challenging for him ...
  • Beautiful photos with this article.
Tell Me Why
Mariah Nichols, A Little Moxie, 7th May 2015
... Tell me why people will jump to the conclusion that she is “high functioning” because somehow so much beauty and moxie are not justifiable in someone who isn’t ...

Sharing the Sad Stuff...

Pudge and Biggie, 1st May 2015When it comes to sharing about my extra-chromosomed squibs, I admit to often withholding about episodes that make my stomach hurt. I obviously experience them. They obviously experience them.

35 Secrets of Being a Special Needs Parent
The Mighty, 29th April 2015
... we asked our readers ... to share one secret about parenting a child with special needs. Here is what we learned.

Opinion: Phenotypes, Oligonucleotides and Me
Olivia Shivas, Attitude Live, 30th April 2015
... you have people who want to know everything and anything about their disability – this may include the science, the genetics or talking to other people in the same situation for advice. On the other hand, there are people who don’t want to know anything about their disability and just want to live their life without it perhaps being a burden as such ...

What it's like to have to defend your right to live
Jacki Brown, Daily Life, 1st May 2015
... I went to a dinner party with some new friends and towards the end of the night talk turned to the vaccination debate. My new friends talked of the polio epidemic as evidence of the need for preventive medical intervention and this led us to talk about preventive screening for Downs Syndrome and the desire for a 'normal', 'perfect' child. It was agreed by the majority that of course you would terminate a pregnancy that was found to be 'abnormal' or disabled ...

Entertainment book/membership - a Mothers Day gift that supports DS NSW

We love Entertainment™ Memberships because they contain over 2,000 offers for up to 50% off and 2-for-1 at Sydney Greater West’s best restaurants, caf├ęs, attractions, hotels, resorts, shopping and more that you can use whenever you like until 1 June 2016! For only $65, you will have access to over $20,000 worth of value. You really only need to use yours twice for it to have paid for itself.

Get one for you and your Mum this Mother’s day! PLUS you’ll be helping with our fundraising as 20% of each membership we sell contributes to Down Syndrome NSW!

Available as the printed Entertainment™ Book that comes with a Gold Card and vouchers, or the Entertainment™ Digital Membership that puts all the offers onto your smartphone! 

Here are just a few of the thousands of offers in the Entertainment™ Membership:

... plus there are thousands more offers! 


Thursday, 7 May 2015

Resources: social media, books, video and more

RLI Closed group
A closed Facebook group for families and educators using or interested in using Down Syndrome Education International's Reading and Language Intervention for Children with Down Syndrome (RLI).
RLI is an evidence-based program designed to teach reading and language skills to children with Down syndrome. It incorporates best practice in structured activities delivered in fast-paced daily teaching sessions. It was evaluated in a randomized controlled trial and found to improve rates of progress compared to ordinary teaching.
Disabi(LIT)y - disability in literature
A blog about books focussing on or featuring people with disability - fiction and non-fiction, including reviews and recommendations, written by the mother of a boy with Down syndrome. If you are a reader, this one's for you. A link has been added to our list of 'blogs we read' in the right hand column of this page.

Too Many Elephants In This House - Auslan
Children's book in Auslan and text on video

New book for health professionals
Down syndrome: Current Perspectives
Richard W. Newton, Liz Marder, Shiela C. Puri, April 2015
Down syndrome; Clinical Perspectives provides doctors and other health professionals (Publisher's note)
with the information they need to address the challenges that can present in the management of syndrome. Chapters written by internationally respected paediatricians with a special interest in Down syndrome, cover Down syndrome comorbidities, such hearing problems, gastrointestinal disorders, congenital heart diseases, as well as the underlying biology and new developments in molecular genetics. Contributions from the UK Down Syndrome Association and Down Syndrome Medical Interest Group define how doctors can work effectively with other professionals to improve health care provisions for this group. Each chapter is illustrated by informative case scenarios and answers to FAQs from parents and carers.
New in the DS NSW library

Frans Families, by Lorraine Maclarty
A beautiful large format book, featuring photos and stories about twelve people with disability associated with FRANS, a Disability Support Organisation located in Sydney's inner west. The book features a number of young people who are also members of DS NSW. Thanks to Margot Elliffe for donating the resource to our library.


Safe at Schools - exploring safety and harm of students with cognitive disability
Dr Sally Robinson, Lel D'Aegher, Anne Graham, Dominique McGovern, Southern Cross University, 2015

Students with cognitive disability experience higher rates of abuse, neglect and exploitation than students without disability. This research project investigated what students, their families and other key supporters such as teachers, disability, and child protection workers think about personal safety in and around school, together with their perspectives on what might make things better. The research was supplemented by an extensive analysis of relevant law and policy in this area. 
The project resulted in a research report; and resources for students, families and professionals working with students who have cognitive disability.
Picture my Future, also known as Image-supported Goal Exploration, is a visual support resource to assist people in the planning process, produced by researchers at Deakin University.

There are five modules:
1. Introduction to Picture My Future
2. Communicating with a person with disability
3. Where does Picture My Future fit in the planning process?
4. Picture My Future - a guide
5. Using pictures to explore hopes and dreams
Someone is No One. Someday is Never 
Crystal Lynn,  Service, Support and Success, Volume 4, Issue 5, May 2015
A person receiving services (the term ‘member’ will be used hereafter) approaches a staff supporting him in his home and says, “I want to go to the movies.” Staff looks up from a pile of paperwork and responds, “Yeah, that sounds nice. Someone can take you soon.” ... These are common dialogues between members and staff. On the surface it seems harmless, but it can actually be quite damaging. In the field of service provision to people with disabilities, we’ve talked about the importance of supporting individuals to make choices. We’ve talked about the hazards of saying ‘no.’ What we need to talk about now is the tendency to – and the danger of – non-committal responses ...