Address details

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

Tuesday, 30 June 2015

NSW CID on supported and substitute decision making

Supported decision making YES! But what role for substitute decision-making?
NSW Council on Intellectual Disability (blog), 25th June 2015
NSWCID strongly supports the movement in recent decades towards maximum control by people with intellectual disability over their own lives.

Far too often, decisions have been made for people with intellectual disability rather than people being offered any support that they need to make their own decisions. Where decisions have been made for people, too often they have been overprotective and not taken enough account of the person’s views ...

See and Learn Numbers: new teaching resouce

Down Syndrome Education International has announced a new release in the See and Learn series:

We are delighted to announce a new addition to our See and Learn resources. See and Learn Numbers is designed to help parents and educators teach children basic number skills and concepts. It will be available soon as apps and kits ... further details and links on the See and Learn blog, here.
Free webinars are one of the strategies offered to introduce See and Learn Numbers. Times that will be most convenient for Australian users are
Wednesday 8th July 7 pm AEST   Introducing See and Learn Numbers
Wednesday 7th September 7 pm AEST   Introducing See and Learn Numbers
Details and times/dates for other time zones are available here (you can enter your own time zone to give the equivalent local time for each event).

Monday, 29 June 2015

NSW Budget Update from NSW CID

NSW Council on Intellectual Disability e-news, June 2015:
The budget was released last week, with the government delivering the final instalment
of their Ready Together initiative, as well as outlining their commitment to the roll out of the NDIS in Western Sydney. 
Further resourcing has also been provided to ensure that people are transitioned from institutions to living in the community. 
However, no certainty has been provided to disability advocacy groups.

Read the Ministers Media Release here .
Read NCOSS Media Release here

On advocacy, leadership and the law

An Ambitious Advocate
Xavier Smerdon, ProBono News Australia, 22nd June 2015
A tireless advocate for people with disability, Graeme Innes has spent his life fighting for fairness. The former Disability Discrimination Commissioner is this week’s Changemaker ...

A lawyer by trade, Innes told Pro Bono Australia News that being born blind meant he had to start his career at the bottom and work his way up.

He has used this experience the shape the way he advocates for other people with disability ...

Plans to appoint wind farm commissioner 'very hurtful', says former disability commissioner Graeme Innes
Judith Ireland and Lisa Cox, Sydney Morning Herald, 19th June 2015
Former disability commissioner Graeme Innes has blasted the Abbott government's plans to appoint a national wind farm commissioner when there is no full-time disability commissioner as "very hurtful" and "very damaging".

"It sends a very clear message about where people with disabilities fall in the pecking order," he told Fairfax Media on Friday.

"Clearly, we fall below strong lobbyists." ...

Yael Frisch, Every Australian Counts, 18th June 2015
Since we all celebrated the first launch sites for the National Disability Insurance Scheme one of the biggest sources of uncertainty that has emerged is what will happen to disability advocacy services in this mix.

While there is a huge focus on services that provide choice and control, when you get asked big questions about life to shape your NDIS plan your first instinct isn’t likely to be “Advocacy fees thanks! Assistance with understanding my rights and ensuring they are protected!” ...
Children and young people in disability advocacy
NSW CID e-news, January 2015
Children with Disability Australia (CDA) have released an insightful issues paper highlighting how there are barriers that prevent children with disability from being advocates. The paper explores this in-depth and provides practical strategies on how organisations can encourage and include children and young people in being a voice so social and policy change. Click here to download the issues paper.

Equality, Capacity and Disability in Commonwealth Laws
Australian Law Reform Commission, 2014
Equality, Capacity and Disability in Commonwealth Laws (ALRC Report 124), 24 November 2014 Final Report 
This final report was tabled on 24 November 2014.This Inquiry examined laws and legal frameworks within the Commonwealth jurisdiction that deny or diminish the equal recognition of people with disability as persons before the law and their ability to exercise legal capacity.A Summary Report is also available. 
Equality, Capacity and Disability in Commonwealth Laws (ALRC 124 Summary)24 November 2014 Final Report 
This Summary Report provides an accessible overview of the policy framework and recommendations in the final Report, Equality, Capacity and Disability in Commonwealth Laws (ALRC Report 124), tabled on 24 November 2014. 
Launch of 'Equality, Capacity and Disability in Commonwealth Laws' - Graeme Smith, NSW Public Guardian presentation, at the launch of ALRC Final Report Equality, Capacity and Disability in Commonwealth laws in Sydney on 11 December 2014.

Acts of kindness aren't enough: disabled people need acts of leadership
Clementine Ford, The Age, 31st December 2014
... It was Stella (Young) who taught me about the social model of disability, which posits that people aren't disabled by their own bodies or conditions but by how society refuses to adapt itself to fully accommodate them. We live in a world that has more respect for heritage-listed buildings than it does for the actual human beings who can't get into them. There is more outcry over children being denied entry into pubs and bars than there is over the fact that wheelchair users can't even get into many of them - and when they can, they still can't be guaranteed that there'll be a toilet they can use. Ignorance and bigotry still actively prevent disabled Australians from making autonomous decisions about their own lives, even while the rest of the country insists on exploiting them for inspiration and motivation ...

Jackie Softly (former Acting CEO, Down Syndrome Australia) commented: Absolutely agree with Clementine Ford on this, but once again, people with intellectual disability and their access and equity issues are nowhere to be seen. Let's make 2015 a year when this changes, when it's realised that lack of information and the support you may need to understand it and have your voice heard excludes just as surely as the lack of physical access does.

National Disability Advocacy Framework
Earlier this month, the Federal Government announced a review of its National Disability Advocacy Framework. Submissions close on 24th July 2015.

Friday, 26 June 2015

Weekend reading and viewing: 27th - 28th June 2015

Andrea Smith, The Independent (Ireland), 22nd June 2015
This Father's Day, David Clarke pays tribute to his dad Pat, CEO of Down Syndrome Ireland, even though he supports Chelsea ...

My Dear Dad
Jerome Lejeune Foundation, 15th June 2015
As a special tribute to fathers and their children living with Down syndrome, the Jerome Lejeune Foundation will launch a video this week in honor of Father’s Day on June 21st called “My Dear Dad:" A heartwarming glance into moments shared by a father and his very special son ...

Therapy for Children with Disabilities
Jisun Lee, Kimchi Latkes, 22nd June 2015
Imagine that someone—let’s call her F. Poe Tenshal—tells you that your baby needs to run faster when he grows up. Ms. Tenshal says that in the world, people need to run at a certain speed in order to do things. Important things. Ms. Tenshal enrolls you and your baby in a program. This program, she says, will allow your baby to reach his fullest, fastest potential. His true self. His best self ...

Mardra Sikora, Lessons More Special than the Needs, 21st June 2015
Marcus has been pretty stoked for this birthday. 25 has been his “number” all year. I’ve never known anyone more excited to be 25. As you may remember, it was pretty much the day after his 24th birthday that he decided to celebrate 25 in Vegas ...

Attitudes - Grading People
Amy Sequenzia, OllieBean, 14th September 2014
Parents and family of disabled people should start demanding that everyone who is part of their children lives stops using functioning labels. We don’t need to be graded. We already have value ...

God bless the child
Jennifer Lawler, Purple Clover, 26th September 26, 2013
My daughter and I couldn't be any more different and that makes me love her even more ...

Poverty and social disadvantage – move over folks, you've had your go
Mark Bagshaw, Pulse (Linked In) 23rd June 2015
On last night's controversial Q and A program on the ABC I had the opportunity to ask the panel a question about poverty and social disadvantage ... As I listened to the responses from the panel to my question, I was left with a profound sense that I was on the set of a B grade remake of Groundhog Day ...

People With Disability Australia E-bulletin June 2015

Canadian Down Syndrome Society campaign 2015

News from the disability sector

Overjoyed, Overwhelmed’, Boy with autism and mother get residency after deportation fight
Robert Burton-Bradley, SBS, 25th June 2015
Townsville nurse Maria Sevilla and her son Tyrone are celebrating tonight after receiving formal notification from the Government that they will be granted permanent residency after months of anxiety and uncertainty for the family ...

Carers Govt Advisory Group Named
ProBono Australia News, 25th June 2015
The Federal Government has announced the members of a new Carer Gateway Advisory Group to lead an initiative to support Australia’s 2.7 million unpaid carers.

The Government announced $33.7 million in the 2015 Budget to build a national carer gateway and to integrate supports for carers to help them get the support they need.

The 12-member Carer Gateway Advisory Group includes a mix of experts from service providers, peak bodies and individuals with a lived experience as a carer.

The Assistant Minister for Social services, Senator Mitch Fifield said the group would draw on this extensive experience to make sure the carer gateway meets the needs of carers across the country.

“From December 2015, the national carer gateway will be the front door for government support and information for all carers, regardless of who they care for,” Fifield said ...
read more on the advisory group and its  membership here.

Commonwealth of Australia, 24th June 2015

Urgent Action Needed on Young People in Aged Care
ProBono Australia News, 25th June 2015
... It said young Australians under the age of 65 currently occupy five per cent of residential aged care facility beds in Australia.

“Both in my home state of Western Australia and nationwide, it is clear the issue of young people with disability living in aged care facilities is going unresolved; too many young people with disability (i.e. under the age of 65) continue to live in aged care," Community Affairs Committee Chair, Senator Rachel Siewert said ...

Young Care, Young People in Nursing Homes National Alliance Summer Foundation, 23rd June 2015
The Young People In Nursing Homes National Alliance, the Summer Foundation and Youngcare welcome the tabling of the Senate’s Inquiry Report into the Adequacy of Residential Care Arrangements for young disabled Australians in the federal Parliament on June 24. 

Throughout its hearings, the Senate’s Community Affairs Committee members have consistently heard calls from family members and YPINH themselves for access to rehabilitation and other vital health services; for innovative housing options to be developed; and for health, housing, disability and aged care services to work collaboratively to deliver the solutions they need. Committee members have also heard first hand of the devastation that results when the full suite of services these young Australians require, are not available to support them. 

Thursday, 25 June 2015

Bronze Lion award for 'The Special Proposal'

You will remember the video The Special Proposal, launched for World Down Syndrome Day 2015 in March. It has just this week won a prestigious Bronze Lion at the Cannes Lions International Festival of Creativity, a global event for creative communications, advertising and related fields. In 2013, the festival attracted over 35,000 entries.

Congratulations to all involved - a great achievement, and a great story worth seeing again, here.

People with Down syndrome online and in other media

People With a Learning Disability Aren't From Mars
Sarah Gordy, Huffington Post (UK), 15th June 2015
As an actress with Down's syndrome and a learning disability you could say I'm fairly rare. I've always enjoyed acting and was told I had a strong talent for it at an early age. Some people underestimated me though.

Today I'm filled with pride to help Mencap announce the beginning of Learning Disability Week. A week where the charity is hoping to break down some of the barriers people like me have faced, by making sure the public really understand what a learning disability is, and that there's no reason to feel afraid or awkward when talking about learning disability ...

Growing up with a disability and facing the bullies
House With No Steps (blog), 23rd June 2015
Growing up with a disability meant that at times I had to face bullies. I want people to know that bullying is not normal and it needs to change - Susy ...

Stephanie Holland, The Road We've Shared, 24th May 2015
One of the ways society is finding out more about Down syndrome is through television and film. While healthy debates within our community critique the message of stories and methods used to tell it, we can all agree that the performances are priceless ...

Woman with Down's Syndrome first in UK to win professional dance tuition place
ITV 2nd June 2015
A 20-year-old woman from Nottingham has become the first person in the UK with Down's Syndrome to gain a place on a scheme for talented young dancers.

Beth Gardiner from Wollaton auditioned for a spot on the Centre for Advanced Training, a programme in which amateur dancers can get professional tuition to further their careers ...

Being a person with Down's syndrome
Kate Powell, DSA (UK) blog,  3rd June 2015
Me Proud. I am a Person To make a difference to a lot of People that’s Me. We may find things difficult, everybody does...

Ruckus Group set to tread the boards
Michele Jedlicka, The Inverell Times, 29th May 2015
It has been a week of dreams and wishes. Alison Richardson, filmmaker Tim Dennis and the ruckus ensemble from Parramatta’s Beyond the Square performing arts program for people with disability spent the week with people in Inverell.

Ruckus itself came for the trip to hone their skills as workshop leaders and encourage locals with a disability to be creative and push beyond their perceived limitations ...

Martin Sheets, Who Shone at the Special Olympics, Dies at 62
Richard Goldstein, New York Times, 24th May 2015
Martin Sheets, who became a face of the Special Olympics, winning more than 250 medals competing for more than 40 years in its events for people with intellectual disabilities, died on Thursday in Greensboro, N.C. He was 62.

“Through the years, we’ve had so many people with children or other family members with special needs say how much it’s meant to see Marty and know of his accomplishments ... He’s had a great life.” ...

Wednesday, 24 June 2015

2015 Trevor Parmenter Lecture

The Centre for Disability Studies is pleased to announce the 2015 Trevor Parmenter Lecture.
This year Professor Dan Goodley, University of Sheffield UK and Dr. Katherine Runswick-Cole, Manchester Metropolitan University have accepted to give this lecture in honour of the contribution made by Emeritus Professor Trevor Parmenter AM to research, policy and practice within the disability field both in Australia and internationally.

The lecture topic, The potential of dis/ability to rethink the working of civil society, is in keeping with Trevor Parmenter's commitment to making the world a better place for all.

For information flyer, online booking / or registration form click here

The event will be held on:
Friday 31 July 2015
5:00pm to 7:00pm

Centre for Disability Studies
Auditorium, Ground Floor, Medical Foundation Building
92-94 Parramatta Rd, Camperdown NSW 2050

Free entry but donations welcome.

Enquiries:  or 02 9036 3600

Senate inquiry into education of students with disability: terms of reference published

The web page for the Senate Inquiry into Current levels of access and attainment for students with disability in the school system, and the impact on students and families associated with inadequate levels of support has now been posted herelisting details of how and when to make a submission:
On 17 June 2015, the Senate referred the inquiry into current levels of access and attainment for students with disability in the school system, and the impact on students and families associated with inadequate levels of support to the Education and Employment References Committee for inquiry and report. 
The closing date for submissions is 21st August 2015.  
The reporting date is 3rd November 2015. 

Tuesday, 23 June 2015

Family passes donated for DS NSW members

Merlin's Magic Wand Charity has kindly been donated tickets to Down Syndrome NSW, for distribution to members, to: 
Wild Life Sydney ZooSea Life Sydney Aquarium Madame Tussauds Sydney 
If you are a Down Syndrome NSW member please email for your family pass. Please state which attraction you would like tickets to. 

If your not a member consider joining today.

Education matters: inclusive education

TEDx Talk: Why separating kids with disabilities from their peers hurts instead of helps 
Hailey Reissman, TEDx Innovations, 2nd April 2015
Educator Torrie Dunlap believes that we look at kids with disabilities the wrong way. By calling their needs “special” and pushing them into “special” schools, groups and activities, we segregate them, sending a message that if you have a disability, you aren’t welcome to participate in “regular” activities. 
What we really need to do, she suggests, is question why our “regular” activities aren’t designed to accommodate kids of all abilities, why “regular” is discriminatory to those with disabilities ...
Inclusive education helping students most in need
James Reid, The Educator, 11th June 2015
In 2012, Alexandra Hills State School removed its Special Education Program (SEP) and integrated its special needs unit with its mainstream classes. Since then, principal, Wayne Fletcher, says he has noticed “excellent” academic and social improvements from his school’s students ...

US schools must stop excluding children with disabilities
David Perry, Aljezeera America, 16th June 2015
Despite laudable progress, too many schools still offer the bare minimum to disabled students ...

Monday, 22 June 2015

Advocacy review announced

Advocacy review to empower people with disability (media release)
Senator Mitch Fifield (Assistant Minister for Social Services), 19 June 2015

The Australian Government today encouraged people with disability, their family, friends and advocates to participate in a review of the National Disability Advocacy Framework.

The National Disability Advocacy Framework provides a structure for governments to work within to enable and support people with disability to protect their rights and overcome barriers.

Commonwealth, State and Territory Disability Ministers endorsed the current Framework in 2012.

The review will ensure the Framework remains relevant in a changing disability environment, including the introduction of the National Disability Insurance Scheme (NDIS).

The Department of Social Services is leading the review on behalf of state and territory governments, and in consultation with advocacy agencies and other key stakeholders.

I encourage people with disability, their families and friends to read the advocacy discussion paper and share their views on the current framework.

Feedback from the review, together with insights from recent NDIS consultations, will be used to develop the new Framework.

Governments will use the Framework to promote greater consistency across advocacy programmes and ensure the rights of people with disability are upheld.

It will also help to describe how advocacy will be provided in the NDIS environment.

The new Framework will be presented to the Disability Reform Council in December 2015 and will be released to the public in early 2016.

To have your say, make a submission at before 24 July 2015.

NSW Budget 2015: funding for disability sector

The New South Wales Treasurer will hand down the State Budget in Parliament on Tuesday, 23 June 2015.  The full set of 2015-16 Budget Papers will be available on this website from 12:00pm on that date. 

Some information about the budget has been released, such as this news report about funding for disability services:

Disability sector set to get $150 million boost in NSW budget as families call for more group homes
Mazoe Ford, ABC News (online), 18th June 2015
The New South Wales Government is promising a $150 million funding boost for people with disabilities in next week's budget. 
The money will pay for 900 new respite places and 310 new supported accommodation places across NSW, to try to cater for the huge demand. 
"It's incredibly important because it'll assist people with disabilities [to] live life their way and provide them those extra needs to be able to choose and have control over their lives," Disability Services Minister John Ajaka said. 
Mr Ajaka said the money was not part of the National Disability Insurance Scheme, but from the state coffers. 
He said the new supported accommodation places and respite services for people who live in the family home would help NSW prepare for the rollout of the NDIS ...

Saturday, 20 June 2015

Weekend reading and viewing: 20th - 21st June 2015

People With a Learning Disability Aren't From Mars
Sara Gordy, Huffington Post (UK), 15th June 2015
As an actress with Down's syndrome and a learning disability you could say I'm fairly rare. I've always enjoyed acting and was told I had a strong talent for it at an early age. Some people underestimated me though. 
Today I'm filled with pride to help Mencap announce the beginning of Learning Disability Week. A week where the charity is hoping to break down some of the barriers people like me have faced, by making sure the public really understand what a learning disability is, and that there's no reason to feel afraid or awkward when talking about learning disability ...

3 myths about Down syndrome
Amy Julia Becker, Parents, 10th February 2015
... it seems that the whole country ... has read aboutLeo Forrest, a baby boy born with Down syndrome in Armenia ... I sympathize with both parents here, and I am delighted to see an international outpouring of support for Leo. And yet this story has unfortunately perpetuated at least three myths about Down syndrome, which I’m sharing here ...

My Day With Dennis
Conny Wenk, A Little Extra, 17th June 2015
... Dennis truly knows how to live in the here and now. He masters that skill. All that matters is THIS moment. He chooses to be happy for no reason at all. Dennis is always true to himself. He is always authentic, honest, and very direct. He does not beat around the bush. He is straight-forward. If he loves you, you'll feel it. If he doesn't like you, you get it. He has some really fine antenna about people ...

Down syndrome screening isn’t about public health. It’s about eliminating a group of people
Renate Lindeman, The Washington Post, 16th June 2015
... When pregnant with my daughter Hazel, tests showed she, too, would be born with Down syndrome. I was shocked when an acquaintance asked me why I did not choose abortion — as if she were a mistake that could be easily erased. Although my personal prejudices have radically changed since the birth of my first daughter with Down syndrome, I realized that negative attitudes about the condition remain deeply rooted. To many, my children and their cohort are examples of avoidable human suffering, as well as a financial burden. Knowing that individuals look at my daughters this way hurts, but seeing governments and medical professionals worldwide reinforce these prejudices by promoting selection is horrendous ...

Who's afraid of the dark?
Orange Juice Flavour Sky, 11th June 2015
... Who’s afraid of Down’s syndrome? 
Really? Are you sure? Or is it just that you’re afraid of what’s lurking under the Down’s syndrome covers. Are you afraid of what you don’t know? The darkness? Afraid of what you can’t see? Afraid of the future?

What is your imagination doing? In the darkness, it's conjured up a picture painted by words of negativity, cold, clinical words which you never expected to hear and can't quite comprehend but you know it suddenly feels difficult to breath, you're feeling light-headed and the walls are closing in ...
So Here's Us, 12th June 2015
... Her photo was stolen. A beautiful shot of her face – one of my favourites, posted on a stock photo website and distributed for free. 
As if that wasn’t bad enough, it was stolen again by a Swiss bio-medical company named Genoma. On the front page of their website and a building sized banner in Spain: there’s her face, larger than life. My daughter has been made the poster child for a prenatal testing kit called Tranquility. As if she were a cautionary tale: don’t let this happen to you ...

Friday, 19 June 2015

DSA Welcomes Senate Inquiry into Education of Students with Disability

Down Syndrome Australia, 19th June 2015

Along with other groups, including Children With Disability Australia, Down Syndrome Australia (DSA) welcomes the Senate inquiry into the education of students with disability in Australia. We are particularly pleased that the inquiry will consider the social, economic and individual benefits of improving education opportunities for students with disability – along with the impact of funding decisions.

DSA, together with state and territory Down syndrome associations looks forward to participating in the inquiry. Down syndrome associations include education advisers and specialists, along with an informed and passionate network of families and supporters.

DSA is determined that the voice of students with Down syndrome will be heard during this inquiry process.

As with all young people accessing education, the quality of education received by students with Down syndrome is a key determinant in their likelihood of securing employment later in life.

Figures available from the Department of Human Services show that only 52.8% of all people with a disability are employed in the workforce versus 82% of the able bodied population, while only 1 in 3 disability employment placements continue for more than 12 months.

“Accessing and participating in education remains one of the most significant challenges encountered by families with a child with Down syndrome. It is often a continuous battle with the school and education department bureaucracy” said Ruth Webber, Down Syndrome Australia CEO.

DSA shares the concerns of Children with Disability Australia, whose recent survey found that 68% of all parents surveyed believe that their children are not receiving adequate support at school. One in four children with disability has been refused enrolment at some point, and a further 17% are only offered part-time enrolment. The survey also exposed both active and passive exclusion of students with disability on a day-to-day basis – an experience often stated by parents with a child with Down syndrome. 39% of respondents said that children with disability were regularly excluded from school activities, such as excursions, playground at recess and lunch, school discos and after-school clubs and classes, because the school did not have the resources to enable them to attend.

Anecdotal evidence from DSA members and parents of students with Down syndrome also indicates that many students are treated as presenting behavioural issues rather than teachers and support staff having an appreciation for the individual needs of the student and implementing differentiated programs and applying strategies that engage those students.

“Strategies like disability specific training programs and in-class observations can and do lead to a marked improvement in outcomes for the student and the teaching staff, however lack of funding is often presented as the barrier to staff participating in such training.”

Ruth Webber
CEO, Down Syndrome Australia

Added 23rd June 2015:

The inquiry home page has now been posted here, listing details of how to make a submission:
On 17 June 2015, the Senate referred the inquiry into current levels of access and attainment for students with disability in the school system, and the impact on students and families associated with inadequate levels of support to the Education and Employment References Committee for inquiry and report. 
The closing date for submissions is 21st August 2015. The reporting date is 3rd November 2015. 

Latest additions to 'events' pages

'Other events' page:
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
The Independent Living Centre - mobility, self-care, communication and vision options will be the topics for the focus talks on the day.
Tuesday 23 June - Coffs Harbour

End of Life and People with Disability Seminar
University of Sydney's Centre for Disability Research and Policy and Lorna Hodgkinson Sunshine Home - adults with intellectual disability deserve information and support about end of life to help them understand and plan. The seminar will feature Australian and UK researchers and practitioners who are currently working on end-of-life issues with people with intellectual disability. These are universal concerns that apply regardless of disability, so several other speakers will discuss end of life as experienced by members of the broader community. The seminar will include reports on the findings of Part 1 of the Sydney-based 3-year research project, Dying to Talk, and will feature a preview screening of excerpts of our new educational video Dying to TalkProgram and registration details are here
1pm - 5pm Tuesday 30th June 2015 - University of Sydney

Grassroots Democracy: The Campaign for Disability Rights Exhibition
The Museum of Australian Democracy at Eureka and the City of Ballarat  - exhibition providing a historic retrospective of this campaign for the democratic rights for Australians with disability. Explores the deinstitutionalization of the 1970s, the right-based activism of the 1970s and 1980s, and onto the present day with the recent introduction of the National Disability Insurance Scheme.
Until Wednesday 29th July 2015 - Ballarat

Special Olympics World Games 2015
76 athletes will represent Australia at the World Games.
25 July – 2 August - Los Angeles, USA 

Professor Dan Goodley visiting Australia
The Centre for Disability Studies is hosting Professor Dan Goodley on his visit to Australia July 30 to August 6.  Dan is interested in theorizing and challenging the conditions of disablism and ableism. Dan will lead a 5 day program of individual lectures and workshops.  More details to come soon.
30th July - 6th August 2015

Down Syndrome Education International Research Forum (UK)
The Down Syndrome Research Forum is a regular international event, sponsored by Down Syndrome Education International, where researchers and practitioners meet to discuss current research, recent findings and implications for practice. Call for papers now open, closes 26th June 2015.
22nd - 23rd September 2015 - London

Thursday, 18 June 2015


Open Future Learning video clips
Open Future Learning provides training for support staff who work with people with intellectual disability, via online modules.  Video clips are posted on Facebook, from time to time - short outtakes from the learning modules, giving a taste of the content, and often providing short, sharp lessons in their own right. The contributors are well known and highly regarded professionals. Come over to my side of the bridge, with Judith North, is an excellent, thought provoking example, posted earlier today.

The essential guide to health care for adults with Down syndrome (2nd edition)
Vee Prasher and Anisha Prasher, British Institute of Learning Disabilities, 2014
A practical guide for professionals, support workers and family members on the health care needs of adults with Down syndrome.

There is a need for a book giving straightforward, practical information on specific health issues that an adult with Down syndrome may experience during his or her lifetime. This book aims to meet that need.

The book deals with both minor and more serious health problems, their possible causes and how they can be prevented and treated. It aims to improve awareness of the most important physical and psychological issues experienced by adults with Down syndrome. 
Considerably revised second edition. Publishers' note.
To borrow this book, Down Syndrome NSW members can contact Jo in the library via email

Staying Safe on Social Media and Online
A free-to-download guide including tips for people with learning disabilities on how to stay safe in social media and online, published by the Foundation for Learning Disabilities (UK), 2014.

Stepping Stones NSW services launched

Today the Stepping Stones Triple P website was launched for NSW parents and caregivers of children with a disability aged 2 to 12 years. 

The website launch marks the start of two years of free access to face-to-face, evidence-based parenting support. 

Find out more about the SSTP Project here. 

Wednesday, 17 June 2015

Further comment on BSWAT legislation passing the Senate yesterday

BSWAT Bill denies right to back pay for workers with intellectual disabilty
Down Syndrome Australia 18th June 2015:
On June 15 the Federal Parliament passed new legislation that will deny people with intellectual disability the right to pursue back pay against the Commonwealth through the courts.

The Government’s Business Services Wage Assessment Tool (BSWAT) Bill will see people with disability prevented from exercising their right to pursue to back pay if they choose to be part of the Government’s Scheme.
The Government’s legislation was passed with the support of a number of the independent Senators. 
Both the Opposition and the Greens attempted to, unsuccessfully, amend the legislation.
These amendments would have enabled those people who choose to participate in the Government’s BSWAT scheme to also continue to participate in a class action that protects their common law rights.
For months, people with disability have been calling on the Government to accept Labor’s amendments. Unfortunately the Government has ignored their pleas.
The BSWAT is one of several different tools used to assess the wages of people who work in Australian Disability Enterprises (ADE’s).
The BSWAT was found to be discriminatory against people with intellectual disability by both the Federal and High Courts of Australia. 
Common sense prevails with passage of BSWAT payment scheme
Senator Mitch Fifield, Assistant Minister for Social Services, 16th June 2015 (media release)
Tonight common sense prevailed, with the successful passage of the Business Services Wage Assessment Tool (BSWAT) payment scheme Bills through the Senate. 
The Coalition Government has persevered to deliver a BSWAT payment scheme that provides certainty for people with disability working in Australian Disability Enterprises (ADEs), their families and carers, as well as their employers. 
The scheme will provide a fast and efficient one-off payment to employees of ADEs who have been paid a pro-rata wage assessed using the BSWAT. 
Representative action in relation to BSWAT continues, and we respect the right of people with disability to pursue this avenue, but recognise this is a process with an uncertain outcome ...
Senate decision may have jeopardised pay case for workers with a disability
Bridie Jabour, The Guardian, 16th June 2015
... The workers are in the process of undertaking a class action with the law firm Maurice Blackburn but on Monday the Senate passed legislation allowing the government to offer the workers up to half of what they are owed. The condition is that they drop any claims to sue. 
The head of employment law at Maurice Blackburn, Josh Bornstein, said the workers and their parents had been the subject of a “scare campaign” to have them take up to the offer. 
The government has not officially revealed the potential total of payments but Bornstein said one of the central claimants had been underpaid by $25,000, so he would be offered up to $12,500. 
“It’s [the legislation] designed to curtail the class action ... my gut feeling is that there’ll be a lot of pressure and persuasion applied to the workers with the intellectual disabilities to sign off,” he told Guardian Australia ...

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.

Tuesday, 16 June 2015

Legislation passed to pay half of backpay owed to Australian workers with intellectual disbaility

The Business Services Wage Assessment Tool (BSWAT) Bill passed the Senate yesterday, immediately leading to further debate:

Government to restore half of intellectually disabled workers' back-pay on the condition they don't sue
Jane Shields, RN Breakfast (ABC Radio), 16th June 2015
How would you feel if you only got paid half of what you were owed for your work? That's the option now facing intellectually disabled workers employed at Australian Disability Enterprises. Late yesterday, the Senate passed a Government scheme that would restore half their back-pay - as long as they waive their right to sue ...

Justice delayed is justice denied for intellectually disabled workers (7m 47s audio file)
Matthew Dimmock, Eureka Street, 15 June 2015
Of all the vulnerable groups in Australia today, people with intellectual disability are surely up there with the most vulnerable and susceptible to abuse and exploitation.

For the most part they exist on the fringes of society, in the periphery of our consciousness. The reasons are structural and attitudinal, deeply rooted in a history of domination and condescension. And it is at play once again ...

We'll give you half: Senate's deal for underpaid intellectually disabled workers
Dan Harrison, Sydney Morning Herald, 15th June 2015
Intellectually disabled workers who were paid as little as $1 an hour will have to waive their right to make discrimination claims if they accept a government payment equivalent to 50 per cent of what they are owed.

Legislation to set up the scheme passed the Senate on Monday with the support of crossbench senators Nick Xenophon, Bob Day, David Leyonhjelm, John Madigan, Ricky Muir and Zhenya "Dio" Wang ...

Senate passes Bill that fails to properly address discrimination for people with disability in the workforce (media release)
Rachel Siewert, Australian Greens spokesperson on Family, Ageing, Community & Disability Services, 15th June 2015
The Australian Greens are extremely disappointed that the recommitted Business Services Wage Assessment Tool (BSWAT) Bill has passed the Senate, saying that it fails to address fundamental discrimination against people with disability.

The clear message from the people with disabilities and peak disability organisations was that this Bill should not have passed the Senate, it is such a shame that people with disability affected now have to choose between a lump sum or class action ...

Senator crossbenchers criticised over bill affecting underpaid intellectually disabled workers
Matthew Doran, ABC News online, 16th June 2015
Disability advocates have criticised Senate crossbenchers for supporting a Government bill that restricts the compensation and legal rights available to more than 10,000 underpaid intellectually disabled workers.

Some of the workers were paid as little as $1 per hour after being assessed for their eligibility to work under the Business Services Wage Assessment Tool (BSWAT) ...

Workers with Intellectual Disabilities Class Action - Maurice-Blackburn Lawyers

Checking the facts ...

Many in the Down syndrome community, both families and professionals, are concerned that non-invasive prenatal screening tests will lead to even higher termination rates of babies with Down syndrome, without parents having access to the information they need to make the most informed decisions they can, in difficult circumstances.

But it will not help efforts to improve the provision of appropriate  and sensitive information, to have inaccurate statistics and claims made in mainstream media.

This week, a story in a UK newspaper has been 'trending' in social media, but the statistics quoted are disputed by Frank Buckley, CEO of Down Syndrome Education International, who has followed and commented on the emergence of non-invasive prenatal screening and its predicted impacts for some years. Frank is a renowned fact-checker:

Selective terminations of babies with Down syndrome have not risen by 35% in three years
Frank Buckley, Frank Talk (Down Syndrome Education International blog), 14th June 2015
A piece in the UK Mail on Sunday claims Department of Health statistics show “women choosing to abort babies with Down’s syndrome and other serious disabilities soars 34% in three years” and that “the biggest proportion was linked to Down’s syndrome, with 693 terminations last year compared with 512 in 2011″. Data collected by the National Down Syndrome Cytogenetic Register (NDSCR) shows this is not the case ...
Why do counts of terminations of pregnancies diagnosed with Down syndrome in England and Wales differ?
Frank Buckley, Frank Talk (Down Syndrome Education International blog), 15th June 2015
Following yesterday’s Mail on Sunday article and my observation that the data quoted was wrong, many people have asked how the Department of Health abortion statistics can be so different from the terminations recorded by the National Down Syndrome Cytogenetic Register ...

Monday, 15 June 2015

'End of Life and People with Disability' Seminar: University of Sydney

This event is co-sponsored by the University of Sydney's Centre for Disability Research and Policy and Lorna Hodgkinson Sunshine Home:
Adults with intellectual disability deserve information and support about end of life to help them understand and plan. The seminar will feature Australian and UK researchers and practitioners who are currently working on end-of-life issues with people with intellectual disability. 
These are universal concerns that apply regardless of disability, so several other speakers will discuss end of life as experienced by members of the broader community.
The seminar will include reports on the findings of Part 1 of the Sydney-based 3-year research project, Dying to Talk, and will feature a preview screening of excerpts of the project's new educational video Dying to Talk.

1pm - 5pm Tuesday 30th June 2015 - University of Sydney

'My Perpective' winner announced in London

David Kenward was announced as the overall winner of (UK) The Down’s Syndrome Association’s international photographic competition, My Perspective 2015. The awards ceremony took place in the glorious evening sunshine at the Orangery in Kew Gardens, London.

... David said: “I love taking photos. It makes me happy. I like it when people like my photos”

When asked about his winning photo, David said, “This is York Minster taken on a foggy, snowy morning. It is a mysterious, moody picture” ...

It is indeed a very beautiful photograph - do go and look at it (and the second, third and runners up) right now

Congratulations David!

Saturday, 13 June 2015

Weekend reading and viewing: 13th - 14th June 2015

David Perry, Washington Post, 11th June 2015
“Nico will get to participate as an audience member.” 
With those words, the teacher explained why my son, a second-grader with Down syndrome, wouldn’t be part of the end of the year performances. These were just little informal plays that emerged from reading groups, groups in which my son was supposed to be included. But the teacher had announced these end-of-the-year events with a flier cheerfully titled, “Come One, Come All.” There were 23 names on the flier, detailing who was in each play on a given day. Nico’s name was conspicuously absent ...
What’s worked for my son with Down syndrome…road safety
Embracing Wade, 7th June 2015
Sometimes when you start out teaching your kids how to do things, you have no idea whether your approach will work or not. That worry can be amplified when your kid has developmental delay as the fruits of your labour can take a long time to ripen. Trying to balance sticking to a method to provide consistency and ditching something that doesn’t work before I have wasted too much time on it used to drive me crazy but as time passes, I am getting better at knowing what works for us and what doesn’t ...
Mary Evelyn, What Do You Do, Dear?  4th June 2015
It hit me on our first night home. I was sitting in bed, a three-day-old baby in my arms, and the heavy hush of evening all around me, when I felt it. It hit me like being woken up from a dream or like a clock chime at midnight or like a broken spell. It hit me the way truth always does when you’ve been keeping it at arms length. This baby was so easy– and easy was much harder than I expected ...
Life Is Full of Surprises, 4th June 2015
... Along with their more challenging traits, (Ollie and Cameron) have blossomed into clever, spirited, personality-filled little guys who, like all siblings, have their similarities but also many differences ...

How to talk to kids about Down syndrome
Sipping Lemonade, 10th June 2015
... He was all of 3 at the time (barely 3 probably) and in a moment of mommy desperation to implore some sort of empathy in my rambunctious toddler, I said something like: “Honey, Kate has DOWN SYNDROME! That means some things will be more CHALLENGING for her. You have to be extra patient with her!” 
Now, in retrospect — whatever my 3-year-old was aggravated with his 1-year-old sister about probably had nothing at all to do with her having Down syndrome. And the totally unaffected, blank expression on his face with my dramatic announcement was proof enough that this meant nothing to him. I could have just as well told him Kate was a trapeze artist from Kalamazoo. 
I would say that this is probably not the right way to talk to your child about Down syndrome ...
What You Really Told Me When You Said Retard
Looking Up with Down Syndrome, 3rd March 2015
... I love someone with a disability. I know how language can be respectful and uplifting and how it can degrade and demean. I have done my research and made evidence-based arguments. I should be able to discuss this calmly with you. I shouldn’t be afraid to speak up. I know I’m right. But I also know this conversation can be a wedge ...

Learn to Surf Day, 31st May, Bondi Beach

Friday, 12 June 2015

Latest additions to events pages

'Other events' page:
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.

Lets Get Started … Getting ready for school and life
Family Advocacy event - free webinar. An opportunity to explore the lifelong benefits of, and strategies to achieve, an inclusive education in regular class for children with developmental disability. Prior registration is essential to login to webinar.
Wednesday June 24 6:30pm - 8:30pm AEST

NDIS Kicks Off
Every Australian Counts event - free event on how the NDIS might transform your life. Reserve you seat.
1st July 2015 - Penrith

Future Planning
Family Advocacy event - hear from Ashurst Law Firm on the legalities of wills, trusts and more. Exclusively for families. Siblings and other adult family members are encouraged to attend. Registration essential. Cost: $15
Saturday 8th August 2015 - Sydney

The Art of Belonging
Belonging Matters Conference -  Through the stories and wisdom of over 20 speakers, this conference will analyse why we rely on communities to support and sustain us, the risk of disconnection and exclusion, and how we support and sustain diverse communities to flourish and prosper. Current information about the NDIS will also be provided.The audience will include people with a disability, families, advocates, organisations, professionals and community members who are concerned about community, disability, diversity and belonging.
27th - 28th August 2015 - Melbourne

Thursday, 11 June 2015

Down Syndrome Swimming Australia: new website launched

Screenshot of Down Syndrome Swimming Australia's new homepage

Congratulations to Down Syndrome Swimming Australia (DSSA)  on the launch of its beautiful, new, much-improved website - it looks great, is easy to navigate and tells you everything you might need to know about events, like the 2015 National Championships, and more:

Bookmark the website now:

You can also follow DSSA on Facebook

Media and resources on employment matters

New Disability Employment Model Needed
Senator Mitch Fifield, ProBono News Australia, 2nd June 2015... We spend around $1 billion each year on disability employment services, but still only a third of those supported by these services will find a job. We need a new system that better works with employers and people with disability to overcome the barriers to employment ...
Senator Mitch Fifield is the Assistant Minister for Social Services with responsibility for disability and ageing. He is also Manager of Government Business in the Senate.

The value that employees with Down Syndrome can add to organizations
Vicente Assis, Marcus Frank, Guilherme Bcheche and Bruno Kuboiama, McKinsey and Company (Brazil), March 2014. Available to download in English, Portugese and Spanish.

... There are mutual gains when people with Down Syndrome are included in the workplace. People with Down Syndrome involved in such initiatives have a better quality of life and opportunities for development, while the companies that employ them often report significant improvements in their “organizational health”. 
People with Down Syndrome generally have a positive impact on a number of “organizational health: dimensions such as leadership, external orientation (a positive impact on client satisfaction), culture and climate, motivation and coordination and control. This impact has been measured in qualitative and quantitative surveys of leading organizations that have chosen to hire people with Down Syndrome. The positive impact people with Down Syndrome can have on “organizational health” also reflects on business performance, as it is known that there is a direct, mapped relationship between increased “organizational health” and business performance. As people with Down Syndrome can affect more than one of the dimensions that make up “organizational health”, they are one of the numerous factors that can influence business performance ... Executive Summary
Note that Australia is not mentioned in this table from the report (p 9).

Finding employment opportunities for people with disabilities
Scherry Bloul, Sydney Morning Herald, 5th June 2015
About two years ago the Food Co-Op at the ANU was approached with a proposal they could not refuse – empower and train people with disabilities as volunteers.

LEAD Contracting is a Canberra based not-for-profit organisation offering meaningful employment opportunities and programs to people with disabilities.

LEAD Community development manager Jeff Thompson approached the co-op shortly after they launched their regular healthy and cheap lunches.

"When the affordable healthy lunches started out it was a great opportunity because it ticks off a whole bunch of things, not only the kind of washing and tidying up, but there is also all the team work, meeting other people and learning about work," Mr Thompson said ...

Also posted in a compilation of News and Commentary on the NDIS on Tuesday:

NDIS helps Briahna Grant-Griffin set up rag doll business with push-button sewing machine
Claire Colley, Canberra Times, 8th June, 2015
... Like most 20-year-olds, Ms Grant-Griffin needs to earn money to make the dream a reality, but living with cerebral palsy makes working a full time job a challenge. Thanks to a push-button sewing machine paid for through the National Disability Insurance Scheme, Ms Grant-Griffin is setting up her own business Lis and Bri Upcycling with help from her mum Alisa Griffin ...

Wednesday, 10 June 2015

Not speaking, but having a voice

While most people with Down syndrome with learn to speak, some will have difficulty with aspects of spoken communication throughout their lives, and some might not speak. Like the those referred to in these two articles, that does not mean that they cannot be supported to give voice to their thoughts, and the advantages that brings ...

5 Reasons Why Speech and Language Therapy is Crucial for a Non-Verbal Child
Becca Eisenberg, Friendship Circle, 14th May 2015
I recently had a conversation with a caseworker regarding individuals who are non-verbal. I asked her if any of the clients in the program receive speech and language services and she responded “Why would someone who is nonverbal need speech and language therapy? They can’t talk!” I explained to her what augmentative and alternative communication is and how important speech and language therapy can be for someone who is nonverbal. 
From my perspective as a speech language pathologist, it is crucial that someone who is limited with communication receive ongoing speech and language therapy so that they can learn to communicate their daily and basic needs and wants to others in their environment ...

Eli Dickenson wins ISAAC Australia Community Award
ISAAC Australia, 20th May 2015
... Eli is changing perceptions, forcing different members of the varied communities with which he engages to think about AAC differently, to recognise that everyone needs a voice and that with a voice a good life is possible.

More on Peter Singer's latest offence

Rather than taking on Peter Singer in debating the content of his latest reiteration of why he thinks it's justifiable to kill babies with disabilities, these two articles analyse why he speaks on the subject at all:

In which Peter Singer Fails to Look in the Mirror
David Perry, How Did We Get Into This Mess? 1st June 2015
It's no secret that I'm not a fan of Peter Singer. He's a eugencist ... If Peter Singer really wants to answer why such discrimination exists, he must, in part, look in a mirror.
Divining Peter Singer –
Kari Wagner-Peck, A Typical Son, 4th June 2015
... it’s hard out there for an author. Given changes in traditional book selling and shrinking marketing budgets authors are forced to engage in what may at first glance look like unseemly tactics but are really just solid book selling techniques ...

Tuesday, 9 June 2015

NDIS event: Penrith

Every Australian Counts event:

News and commentary on the. NDIS (33)

NDIS Newsletter, May 2015

Quarterly NDIS report to March 2015

NDIS helps Briahna Grant-Griffin set up rag doll business with push-button sewing machine
Claire Colley, Canberra Times, 8th June, 2015
... Like most 20-year-olds, Ms Grant-Griffin needs to earn money to make the dream a reality, but living with cerebral palsy makes working a full time job a challenge. Thanks to a push-button sewing machine paid for through the National Disability Insurance Scheme, Ms Grant-Griffin is setting up her own business Lis and Bri Upcycling with help from her mum Alisa Griffin ...

Uniting Care ends disability service
Ian Kirkwood, Newcastle Herald, 29th May 2015
Church welfare organisation Uniting Care will no longer provide disability care in the Hunter, and staff are blaming difficulties with the National Disability Insurance Scheme for the decision. Uniting Care denies the move is related to the NDIS but acknowledges it will no longer provide disability services after conducting a ‘‘review’’ of its operations ...

Disability Loop - new websiteAustralian Federation of Disability Organisations (AFDO) launched the Disability Loop website in late May.

“Disability Loop aims to give people with disability and their families information about the National Disability Insurance Scheme (NDIS) that is up to date, easy to find and easy to use,” said Matthew Wright, AFDO CEO.

“Disability Loop is different to the NDIS website because it is run by and for people with disability and their families. It also brings together information from lots of different websites, not just the NDIS."

Disability Loop is a project run by AFDO and funded by the NDIS Sector Development Fund (SDF).

The Disability Loop website and its accompanying social media channels (eNews, Twitter, Facebook and YouTube) are the online face of AFDO's Disability Loop project.

The Disability Loop website is one element in the broader Disability Loop project. More elements of the project will be developed later in the year. This is what we can tell you a bit about now:
  • The Disability Loop website. AFDO has developed and will maintain a website to house and promote information relating to the NDIS. Disability Loop staff have developed and will distribute an accompanying eNews, and accompanying social media activities.
  • Gap analysis and resource development. Disability Loop project staff have been consulting broadly with the Australian disability advocacy sector about the NDIS. Disability Loop will provide a comprehensive report on the information needs of people with a disability and/or their families, and develop resources to meet identified needs. This may include printed and electronic resources.
Diana Qian, Every Australian Counts, 22nd January 2015
... Since the Productivity Commission’s report in 2011 on disability care and support it’s widely quoted that the current disability system is ‘broken’. We look to the NDIS as the fix but from where I’m sitting the institutional racism that permeated the ‘broken’ system is not being consciously addressed in the new fix ...

Disability advocates call for Senator Mitch Fifield to be 'more forthcoming' over NDIS funding
Norman Hermant, ABC News, 28th May 2015
Disability advocates' concerns grow as another federal budget passes without specific details about how the National Disability Insurance Scheme (NDIS) will be paid for when it is rolled out in full.

Looking at NDIS funding can be misleading ...

Finn Pratt rewarded for role in historic NDIS social policy
Noel Towell, Canberra Times, 8th June 2015
The Department of Social Services boss has been named an Officer in the General Division of the Order of Australia for distinguished service to public administration for his work on the National Disability Insurance Scheme ...