Address details

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

Monday, 29 February 2016

Latest additions to events pages

These links provide information about events run by other organisations that might be of interest to people with Down syndrome, their families, carers and professionals who support them 
All current events listings 
pig dog
Studio A artist Peter Dudding
First solo exhibition, curated by Paul Williams,
2 - 24 March 2016 - First Draft Gallery, Wolloomooloo 

'Decisions, decisions ...'
Carers NSW - a free workshop on Supported Decision Making for young people with disability aged 14-18 years and their families and carers. Download flyer.
March - July 2016 - locations across NSW

Days Like These
Murmuration Dance Theatre - an interactive sharing where workshop members and guests are invited to observe the current work-in-progress by the company’s professional artists, followed by reflection, discussion and exploration of tasks with the artists. Bookings essential.
6:00 – 8:00pm Tuesday 8 March 2016 - Carlton (Sydney)

United Nations: 5th World Down Syndrome Day Conference 
“My Friends, My Community” - the benefits of inclusive environments for today's children and tomorrow's adults. The World Down Syndrome Day Conference is sponsored by the Permanent Missions to the United Nations of Australia, Brazil, India, Iran, Israel, Japan, Mongolia, Poland and Singapore, UNICEF, UN Department of Economic and Social Affairs (DESA) and International Disability Alliance.
21 March 2016 - New York

Transition To Retirement for Older People with a Disability
Western Sydney University: workshop presented by Prof. Roger Stancliffe, Uni of Syd and Dr. Nathan Wilson, Western Sydney Uni; will provide disability practitioners with detailed practical information about how to effectively support older people with long-term disability (such as intellectual disability) to join mainstream community groups or volunteering groups and participate long term.
Register online via iPay - Scroll down to the School of Nursing and Midwifery and select the Transition to Retirement Workshop.
Friday 8 April 2016 - WSU, Richmond

Registrations now open  - early bird discounts up to May.
15 – 19 August 2016 - Melbourne Convention Centre

NSW Council for Intellectual Disability 2016 Conference
14 - 15 September 2016 - Pyrmont 

NDIS approach to early intervention published

There’s been a lot of talk about early intervention and the NDIS.  Today we’re releasing our Early Childhood Early Intervention approach, designed to ensure every child and their family receives individual support to meet their goals and aspirations ... NDIS on Facebook, 26 Feb 2016

NDIA announce first nationally-consistent approach to early childhood early-interventionNational Disabiity Insurance Scheme, 26 February 2016

For the first time, a nationally-consistent approach to supporting children with developmental delay or disability will exist with the release today of the National Disability Insurance Scheme’s (NDIS) Early Childhood Early Intervention (ECEI) Approach.

The National Disability Insurance Agency (NDIA) has worked with some of Australia’s leading early childhood intervention practitioners and researchers to design a best-practice approach that is family-centred and importantly, supports children to achieve good outcomes on a case-by-case basis.

NDIA Chief Executive Officer, David Bowen said early intervention was an important part of the NDIS.

"Evidence shows that timely support for a child with developmental delay before the age of six can significantly change that child’s developmental trajectory and overall quality of life," Mr Bowen said.

"The NDIS Early Intervention Early Childhood Approach is focused on inclusion, with children supported in a range of mainstream early childhood settings such as preschool and play group, meaning increased opportunities to learn and develop positive social relationships.

"The short, medium and long-term benefits to children from such support are proven to be significant. Effective early intervention also reduces the medium to long-term liability on the NDIS."

Under the ECEI approach, a child and their family will be referred to a specialist early childhood access partner who will discuss their needs and determine the appropriate supports to help them achieve their individual goals. Supports may include information services, emotional support or referral to mainstream services, or longer-term more intensive supports as part of a funded NDIS plan.

Mr Bowen said the ECEI approach was in line with the individual nature of the Scheme.

"The whole premise behind the NDIS is that each person is treated as an individual, receiving support to meet their unique set of needs, wants and goals to achieve the best outcome for them," Mr Bowen said.

"Exactly what that will look like for each child and their family will vary. The level and nature of supports is tailored to meet the individual needs of the child and their family, regardless of diagnosis.

The ECEI approach is currently being trialled in the Nepean Blue Mountains region. It will be rolled out nationally, in line with the arrangements in the bilateral agreements between the Commonwealth and state and territory governments.

For more information on the NDIS ECEI approach go to
  • Download the Early Childhood Early Intervention approach (PDF, 550KB)

Friday, 26 February 2016

Weekend reading and viewing: 27 - 28 February 2016

When My Daughter With Down Syndrome Found a Forever Friend
Hallie Levine,, 20 February 2016
Jo Jo and Lily are like any other BFFs—with one exceptional difference that actually makes no difference at all ...

"I have Down syndrome and I consider it a gift, but at first I thought it was a curse."
Susan Kaphammer and Joshua Myers, Story Corps via NPR Morning Edition, 19 February 2016
Joshua Myers, 29, was born with Down syndrome. Growing up, he often felt overwhelmed by his condition and struggled with depression ... audio file, 2m 58s

My son with Down syndrome is not a mascot for abortion restrictions
Rachel E. Adams, The Washington Post, 19 February 2016
... Last month, the Missouri Senate debated a bill that would outlaw selective abortion — that is, termination of an otherwise wanted pregnancy on the basis of a Down syndrome diagnosis. This is not the first bill of its kind. In 2013, North Dakota passed a similar ban, and legislation is pending in Ohio and Indiana.

... Let’s recognize this legislation for what it is. Not a weapon against prejudice. And not a way to save lives. It is one more chapter in the conservative attempt to curtail women’s reproductive freedom. Those of us who genuinely want to end discrimination against people with Down syndrome should fight to preserve the services that allow them to thrive.

How “Inspiration Porn” Reporting Objectifies People With Disabilities
David Perry, The Establishment, 25th February 2016
... The coverage, though, takes what could be an important story about inclusion and turns it into a superficial, saccharine story that objectifies Tori in order to make the reader feel good. It’s just another example of what disability activists and media critics call “inspiration porn.”

Inspiration porn is a widespread problem in how the media reports on disability. There are many different versions, but teenagers with Down syndrome just living their lives often make for particularly compelling subjects for journalists looking to create viral stories using their stereotypical cuteness, sweetness, or angelic nature. Although frequently well-intentioned, the stories often objectify instead of building awareness around real issues or experiences ...
Lyn Gardner, The Guardian, 16 February 2016
Gender and racial diversity is growing in UK theatres – but disabled creatives are being left behind. We have to shift away from patronising box-ticking ...


CTV News on the huge response to Robb Scott's video, the subject of this post from Monday 22/02/2016


"Look at the way she looks at you. Now memorize that look and store it somewhere so 
you can pull it out whenever you feel like you don't measure up to the world." 

This look is our kryptonite for inadequacy. 

Kelle Hampton's (@etst) caption for a very sweet image of
her daughters on Instagram this week.
Kelle Hampton blogs at Enjoying the Small Things

'No research on disabled people should happen without the input of disabled people ...'

Very timely feedback from a recent Melbourne conference:
... A resounding theme of the conference is the need to include disabled people in research and debates. “This is the 21st century. No research on disabled people should happen without the input of disabled people,” says Katharine Annear, Chair of the Autistic Self Advocacy Network ...

Connecting the needs of people with disabilities with university-led research is central to improving their access and participation in the community.

The 2016 Disability, Human Rights and Social Equity Conference, hosted by the Melbourne Social Equity Institute, tackled these issues in a two-day conference at the University of Melbourne.

The February 4-5 conference set out to encourage researchers from a range of disciplines to include people with disabilities and disabled persons organisations in developing research which focuses on human rights, participation in community life, access to mainstream activities and services, and broader systems change ...

Thursday, 25 February 2016


Online courses: Intellectual Disability Healthcare around the World
... Worldwide, 60+ million people with intellectual disability experience poor health, die prematurely and receive inadequate healthcare. You will gain an understanding of the barriers and enablers for people with intellectual disability, their families, and their healthcare providers. 
In our courses, you will learn about best practice in the field of intellectual disability healthcare and gain knowledge to improve health outcomes for this disadvantaged group ...
This very reasonably priced series of three self-paced EdX courses beginning in March 2016, is presented by Prof Nick Lennox and Miriam Taylor, from the Queensland Centre for Intellectual and Developmental Disability, University of Queensland.

Making a paper-based AAC-book
Assistive Ware, 15 October 2015
For many reasons it can be useful to create a paper-based book of your vocabulary. It gives you a backup communication system if anything should happen to your iPad. At different times, in different environments it can be very handy to have a paper copy! Perhaps the AAC user has more success accessing their communication in a book like this! And if we are trying to do more modeling in the AAC app, your paper-based book is just another way to do it!

I have created the entire vocabulary in this book and it was quite a job! However it is also okay to print and laminate a few pages to use in a specific way, eg. all the food pages to have a copy in the kitchen. This book is based on a 5X9 Grid in Proloquo2Go's Intermediate Core vocabulary, but you can use any AAC app to create a paper-based version ...

NSW CID 2016 Conference

Advance notice of the annual conference - further information is available from the NSW Council for Intellectual Disability:

Wednesday, 24 February 2016

From the inside (2)

#SayTheWord, Not “Special Needs”
eisforerin, 16 February 2016
... Every time someone says “special needs,” they reinforce the false notion that disabled people are asking for “extras” when we require accommodations, modifications, and/or support to access the same things that non-disabled people are able to access, such as education, public spaces, community involvement, and so on ...

The unofficial biography: #FashionAngel. Parodying inspiration porn
Carly Findlay, 11 February 2016
... I'm releasing an unofficial biography. All the cool crips are doing it. The art proof came in on the weekend. I'm loving the Vogue Magazine quote - clearly they're scouring my instagram ... That's a parody. Not a real book. I had so much fun helping to create it though. And I hoped that while it makes people laugh, it also makes them think.

Disabled people are not your feel-good back-pats
Autistic Hoya, 11 February 2016
... Typically, the story ends with the non-disabled participant "heroically" letting the disabled person (usually a person with an intellectual or developmental disability) win. The underlying assumptions, of course, are that (a) disabled people are incapable of winning or even competing alongside everyone else because we are automatically not good at anything ever, and (b) disabled people lack awareness of reality so much that we can't tell when others are patronizing or condescending ...
"Do you want to support disabled people? Do you want to be more informed, more educated, less ignorant, and less foolish? Then start by paying attention to what we have to say. Start by learning the tools of practicing allyship. Start by assuming that your assumptions are wrong or at the very least, misinformed. Start by questioning narratives that seem to be much more about a non-disabled person's supposed heroics than about a disabled person's humanity and agency in controlling the narrative about them. Start by focusing less on some special one-time event or photo shoot, and more time on the systemic problems in your backyard..."

Our stories, our voices, everyday
Jax Jacki Brown, Writers Victoria, 10 February 2016
... ‘Disability is a culturally fabricated narrative of the body’.

I wanted to tell you about this quote because I think it invites you to ponder the stories we tell, and consistently are told, about disability and how these narratives frame how we think about it, how we write about it and how we, as a society, respond to physical or mental difference ...


Financial Literacy for Learners with Down Syndrome 

A workshop for parents and caregivers of high schoolers/adults, presented by Dr Rhonda Faragher

Register now
Money skills are usually a challenge for learners with Down syndrome. Most ‘functional maths’ programs focus on outdated skills, such as using coins and calculating change.

This workshop for parents/carers explores key functional skills in financial literacy that will actually allow people with Down syndrome to participate in the adult world. 

Concepts will include 
  • understanding budgets, 
  • setting up electronic banking and using EFTPOS
  • strategies for teaching 
  • taking account of maths learning profiles 
While this session is targeted towards parents/carers, should you wish to bring along your person with DS, we are happy to offer them a discounted rate of 50% (if accompanied by a paying registrant).

Date: Wednesday 16 March 2016 Time: 7:30 – 8:30 pm Venue: SMC Conference and Function Centre, 66 Goulburn Street, Sydney Cost: $55 per session, inc GST.

Register now!

For more information, email

Tuesday, 23 February 2016

Health news, information, commentary

Down Syndrome Nutrition: Top Tips from Joan Guthrie Medlen, MEd, RDN, LD
Global Down Syndrome Foundation, 19 January 2016
Recipient of Global’s Award of Excellence in Behavioral Health and Nutrition and author of the Down Syndrome Nutrition Handbook, Joan Guthrie Medlen shares her three important tips for healthy living and well-being.

The November 2015 Global Down Syndrome Foundation Educational Series focused on Nutrition and Lifestyles for Children, Teens, and Adults with Down Syndrome.

Losing Angelica: why one family decided to relinquish their daughter with a disability
Miki Perkins, The Age, 21 February 2016
People in Australia with a dual disability need better care ...

Why society is making people with disabilities sick
Anne Kavanagh, Pursuit (University of Melbourne), 29 January 2016
... When I talk to public health colleagues about my research I am sometimes met with furrowed brows, consternation. What do I mean? After all, doesn’t disability equal poor health by definition? “No, not necessarily,” I say ...

Current models of health service delivery for people with intellectual disability: Literature review 
NSW CID e-news, #1, 2016
The Social Policy Research Centre (SPRC), UNSW, Australia, has recently conducted a review on current models of health service delivery for people with intellectual disability. The aim of this project is to improve health services for people with intellectual disability in NSW.

World Down Syndrome Day: 21 March 2016

From Down Syndrome International:
Are you ready for our WDSD 2016 Video project - coming soon?

We will be featuring interviews with people with Down syndrome from around the world!

Check out our preview video from 2015...

For WDSD 2016, DSi is focusing on:

“My Friends, My Community” - the benefits of inclusive environments for today's children and tomorrow's adults.
People with Down syndrome, on an equal basis with other people, must be able to enjoy full and equal rights, both as children and adults. This includes the opportunity to participate fully in their communities. 
The reality for many is that prevailing negative attitudes result in low expectations, discrimination and exclusion, creating communities where children and adults with Down syndrome cannot integrate successfully with their peers. 
But where children with Down syndrome and other disabilities are given opportunities to participate, all children benefit from this and environments of friendship, acceptance, respect for everyone and high expectations are created. 
Not only this, but these environments prepare all today’s children for life as tomorrow’s adults, enabling adults with Down syndrome to live, work and participate, with confidence and individual autonomy, fully included in society alongside their friends and peers.
On World Down Syndrome Day, Monday 21 March 2016, join us to encourage children and adults with Down syndrome to say “My Friends, My Community” and get the world talking about the benefits for everyone of inclusive environments ... read more on World Down Syndrome Day 2016

Monday, 22 February 2016

A Dad reconsiders a 'teachable' moment in the video store ...

Has this ever been you?

Robb Scott's recognition that he failed to respond to a 'teachable moment' about people with Down syndrome, is trending on Facebook, with thousands of 'likes', shares and comments It will resonate for many of us - as one commenter noted, there are too many such opportunities, we just have to let some of them go, to be able to get on with our own families' lives. Many others have said that he has more than made up for his self-defined failure to advocate for his son and other people with Down syndrome, by articulating his more considered response so freely online.

Most of us do feel a responsibility to educate others, and we all do it by our everyday actions and interactions - but none of us has responsibility for every occasion. There are enough of us to cover each other. Every time we choose not to step up, simply cannot, just or miss an opportunity, someone else is doing it somewhere else - we cannot, and are not required to be 'on' all the time. Sometimes we are just Dad or Mum, and sometimes we are just us - and it's okay.

Calling out ableism - some recent examples

Ableism is an age-old ideology, although naming it and calling it out are more recent:

I changed the name of my blog and this is why you should care
Jennifer Philp, Mother of Bones, 10 February 2016
... I think it’s really important to listen to the disabled (adult) advocates who have come forward and criticized the way we (the parents) are writing. They are the ones currently identifying and confronting ableism, a role that my son will one day fulfill ...

Why the Concept ‘Mental Age’ is Ableist
Erin Schroeder, Hands In Motion, 8 February 2016
... if you were to measure it based on a standard applicable to that of a group of people sharing an individual’s neurotype, rather than attempting to cross apply the standards of one neurotype to a completely separate one, and if you were to make the method of testing mental age accessible to people whose neurotype is the same as that of the person you were testing, most individuals who are currently viewed as having a low 'mental age' would actually come much closer to the baseline level for their age group ...

Why does Hollywood keep doing this to the disability community? 
Brendan Malone, The Leading Edge, 13 February 2016
Video critique of Hollywood's typical approach to characters with disability, 'prompted by an article I read yesterday from a disability rights activist about an upcoming blockbuster movie based on a best selling romance novel which portrays disability and persons with disability in a demeaning and harmful way,' including a link to the article.

Friday, 19 February 2016

Weekend reading and viewing: 20 - 21 February 2016

Melbourne Cup winning jockey Michelle Payne and brother Steven named Moomba monarchs
ABC News online, 17 February 2016
Melbourne Cup winning jockey, Michelle Payne, and her strapper brother, Steven Payne, have been named as this year's Moomba monarchs. Ms Payne said she was so happy to enjoy the experience with her brother.

"It's such a great honour that you would choose Stevie and I," she said ...

Envisioning a life with a child with Down syndrome
Mark Leach, Down Syndrome Prenatal Testing, 17 February 2016
Envisioning a life with a child with Down syndrome is one of the biggest challenges for most expectant parents receiving a prenatal test result ... the next generation of parents may have a new vision of what a future life with a child with Down syndrome can look like.

I support unicorn farts
Jisun Lee, Kimchei Latkes, 12 February 2016
Why on earth were these parents shouting these strangely positive things, every chance they got? Weren’t they sad? Their children had Down syndrome, after all. How is it possible that having a child with Down syndrome meant that your life was filled with unicorn farts and rainbows? Where was the reality?

... (but) Why shouldn’t a parent be loud and proud, without being accused of being in denial? ...

The bumpy path of Down syndrome
Helen Middlebrooke, Pacific Daily News, 16 February 2016
... Although I fancy myself her teacher, I am the student. Deborah has taught me the importance of living in the moment, of taking life as it comes and not worrying ...

'We have a heap of love to give': One couple's decision to adopt a baby boy with Down syndrome
Margaret Burin, ABC News online, 18 February 2016
When mother-of-five Emma was browsing Facebook last year, she came across a post that she knew would change her family's life forever ...

His Path To Independence: He moved To His Own Bathroom
Eliana Tardio, 16 February 2016
... My handsome and smart big-little man. I was once worried about his growth, and I was once terrified of comparing his milestones to typical kids his age, but not anymore because to me, he is on the perfect path to independence. Still, I can’t believe he just moved to his own bathroom ...

10 Things I've Learned from My Daughter with Down Syndrome
Amy Julia Becker,, 17 February 2016
One mom shares what she's learned in the first decade of raising a child with Down syndrome ...

Dave Hingsburder, Rolling Around in My Head, 15 February 2016
... Families of people with disabilities have not been credited with the work they have done. The concepts of 'community living' and 'inclusion' and 'integration' didn't pop out of the pages of a book written by a professional visionary. It didn't fall out of the mouth of a lecturer, of renown, standing at a podium. It didn't result, as I think would be obvious, from a committee meeting ...

When the Golden Rule Gets Lost In Disability
Ellen Stumbo, Hope and Encouragement, 15 February 2016
... So how should you treat a person with a disability? Treat them like you want to be treated right now, exactly the you that you are now, same circumstances you have now.

If you are an adult, would you want someone to talk to you like a child? ...

Latest additions to events pages

These links provide information about events run by other organisations that might be of interest to people with Down syndrome, their families, carers and professionals who support them.

Person Centredness in Employment SettingsCentre for Disability Studies, University of Sydney: This Person Centredness in Employment Settings workshop covers the following topics:  Rationale for developing a culture of Person Centredness in disability organisations;  The meaning and value of work; Values that underpin Person Centredness and work;  Culture and Person Centredness in employment contexts; Demystifying the myths about Person Centredness and work; Enhancing Employment Services through Person Centredness; Supporting one another and growing in Person Centredness;  Being a Person Centred Support Person in an Employment Service. Facilitators: Clinical Professor Vivienne Riches; training consultant Ray Murray.
Monday 29 February and Tuesday 1 March 2016 - University of Sydney, Camperdown

(US) National Down Syndrome Congress 44th annual Convention
Each year, thousands of people from across the globe attend the National Down Syndrome Congress Annual Convention. For most, it’s to hear the latest information from world-renowned experts. For others, it’s a great vacation. But for nearly all, there’s the one-of-a-kind NDSC family reunion feeling that permeates the convention weekend.
July 21-24, 2016 - Orlando, Florida

Thursday, 18 February 2016

Project Co-ordinator – NDIA Disability Support Organisation Project

Down Syndrome NSW has a vacancy for a Project Co-Ordinator to lead a project building the capacity of people with intellectual disability to engage confidently with the National Disbaility Insurance Scheme (NDIS).

You will be working two days a week, with a small team based in North Parramatta, to establish and coordinate up to 20 peer support networks across the state.  Duties include recruiting and supporting local facilitators, developing resources and regular communication with other agencies in the programme. There may be some weekend work and occasional travel.

Down Syndrome NSW is a dynamic not-for-profit organisation that champions the rights of people with Down syndrome to be fully included in all aspects of society.  We are a flexible, family-friendly workplace.

This position is classified under the Social Community Homecare and Disability Services (SCHADS) Industry Modern Award. The project runs until 30 December 2016.

For further information and an information package please contact Tracylee Arestides on (02) 9841 4444 or email

Application close Wednesday 2 March, 2016.


“Growing up with Down’s syndrome” – Activities for Young Children
Down's Syndrome Association (UK), February 3, 2016
We are delighted to share 12 films made by Movimento Down, Brazil, which show activities for babies and toddlers guided by physiotherapist Alexandra Wakahara. The short films describe activities and supports for children from birth to 3 months, 6 to 9 months, 9 to 12 months and for children older than 12 months ...

New video from Conversations that Matter
Norman Kunc's presentation, "The Right to be Disabled" - you need to subscribe to access the videos. The cost is very reasonable.
Five tips to ensure your app is accessible
Adrian Redden, Media Access Australia, 11 January 2016
When testing apps for accessibility, we often find that important issues are overlooked during the development process, omitting a large portion of users from being able to use an app effectively. Most of these problems are simple to fix and can mean the difference between a friendly or frustrating user experience ...

Changes to See and Learn Language and Reading
Down Syndrome Education International, February 2016
We are expanding our See and Learn Language and Reading program to introduce additional vocabulary, further grammar and more reading opportunities. In addition to the new steps we are planning, we are updating existing resources and renaming some – and starting to release new app editions ...
Revised print edition now available.

Wednesday, 17 February 2016

News, opinions and commentary from the broader disability community

When Tim Wilson became 'Freedom Commissioner', there was no money left for disability advocacy
Graeme Innes, ABC News online, 15 February 2016
Australians with disabilities have paid a high price for the Federal Government's decision to give an unnecessary job to a politician-in-waiting rather than hire a full-time Disability Commissioner, writes Graeme Innes ...

Tim Wilson should be replaced by a disability commissioner: advocates
Judith Oreland, Sydney Morning Herald, 15 february 2016
Disability advocates are calling on the Turnbull government to use the vacancy created by Tim Wilson at the Human Rights Commission to appoint a full-time disability commissioner.

Australia has been without a full-time disability commissioner since July 2014, when Graeme Innes' term ended and he was not replaced by the Abbott government ...

Noel Towell, Canberra Times, 15 February 2016
Disabled Australians could be forced to wait up to a year for their disability support claims as the government's crackdown on the pension clogs the system with thousands of medical examinations ...

Garden of My Heart, 8 January 2016
... As parents, we research our children’s diagnoses. We know pretty much everything there is to know about the logistics of it. How it might affect our children, what things to watch for, what services might be helpful.

But it seems we are forgetting crucial pieces of the puzzle: the perspective of people who actually have that diagnosis, and the voices of the larger disability community ...

What Making a Murderer tells us about disability and disadvantage in criminal law
Piers Gooding, Anna Arstein-Kerslake, Bernadette McSherry, Louis Andrews, The Conversation, 9 February 2016
... The Sydney-based Intellectual Disability Rights Service has called for support for people with cognitive disabilities when interacting with the police. Without appropriate support, people with cognitive disability may want to please authority figures, or may not understand questions or legal cautions. They may also just want to get out of the police station as quickly as possible ...

Eight thousand young people kicked off disability support pension
Angela Lavoipierre , The World Today (ABC radio), 28 January 2016
The Federal Government claims its crackdown on the Disability Support Pension (DSP) is working, with 8,000 people kicked off the payment in the final half of last year.

On top of that, the number of first time applicants being rejected for the DSP has risen dramatically ...

Minnesota is developing alternatives to segregated workshops for people with disabilities
Chris Serres Star Tribune, 4 February 2016
... In recent weeks, state and county workforce officials have quietly introduced an ambitious new project — modeled after a highly successful program in Ohio — to give people with disabilities an alternative to working in “sheltered workshops,” cloistered workplaces that pay as little as $2 an hour for mundane jobs such as packing boxes, shredding paper and collecting trash ...

Dennis McGuire to visit Australia: Mental Wellness and Healthy Ageing 2016

Down Syndrome NSW is delighted to announce that Dennis McGuire PhD, internationally renowned Down syndrome behavioural expert will visit Australia in May, 2016. Dennis is co-author of Mental Wellness in Adults with Down Syndrome and The Guide to Good Health for Teens and Adults with Down Syndrome.
Dennis McGuire is a highly sought after speaker on the areas of mental wellness and ageing in people with Down syndrome (DS).  In 1992 Dr McGuire, with colleague Dr Brian Chicoine MD, established The Adult Down Syndrome Centre  in Chicago. During his tenure as Director of Psychosocial Services for the Centre, Dennis served the health and psychosocial needs of over 5000 adults with Down syndrome. In 2013 he joined the Global Down Syndrome Foundation to establish a centre of excellence for the care of adults with DS and is now in private practice. He regularly presents at national and international conferences and has contributed to numerous publications.
Dennis McGuire will present a series of seminars in Melbourne and Sydney for parents, carers and service providers. There will be separate professional development seminars for health professionals with an interest in intellectual disability.  Interactive webinars with Dennis McGuire will be announced shortly for people living outside the Melbourne and Sydney areas.
‘Dennis is a warm and engaging speaker with a wealth of lived experience in understanding people with Down syndrome and creating the best conditions to encourage mental wellness,’ said Margot Elliffe, DS NSW Board member and chair of the Mental Wellness and Healthy Ageing 2016  Tour Committee.  ‘This is a unique opportunity for anyone in the Down syndrome community to get first-hand information to support healthy ageing and mental wellness for all people with Down syndrome'.
Dennis McGuire will be in Melbourne on May 6 (professionals) and 7 (family and carers), and Sydney on May 13 (professionals) and 14 (family and carers), 2016.
For further information call 02 9841 4444 or click register Mental Wellness and Healthy Ageing 2016

Tuesday, 16 February 2016

Housing and the NDIS - tell PWDA about your options

People with Disability Australia is inviting input on housing and the National Disability Insurance Scheme through its Facebook page or by email - there are more questions to come, so 'like' the PWDA page to keep up with this important work:
PWDA is working on several submissions about housing and the NDIS and we want to hear from you! 
This week, we are going to ask a number of questions about different issues around housing and we want to hear from you in the comments. 
If you want to privately tell us about your experiences with housing, email us at
You can read about one inquiry here. 
Today, we want to know where you are living right now - public housing, private rental, a group home, nursing home, a shared accommodation, such as a hostel or somewhere else? 
How much choice do you have about where you live?

News and commentary on the NDIS (44)

NDIS Newsletter  January 2016

Experts propose novel ways of solving disability accommodation shortfallAnnie Guest, AM (ABC Radio), 16 february 2016
A key aim of the National Disability Insurance Scheme is independent living - however the majority of people with disabilities won't receive housing support. A disability working group has crunched the numbers and found at least 45,000 people with disabilities will remain in unsatisfactory housing. It's now proposing governments enter shared equity arrangements to help people with disabilities buy their own home.
NDIS will pay for itself: new analysis forecasts huge jobs growth
Rachel Browne, Sydney Morning Herald, 15 february 2016
Fears of a funding shortfall in the National Disability Insurance Scheme are unfounded according to the findings of an economic report which shows that the program will spark a multi-billion dollar jobs boom in NSW ...

The NDIS is rock solid
Every Australian Counts, 12 February 2016
Another week, another story about funding and the NDIS. So it’s great news to see strong support from the NSW Disability Minister in our national newspaper and a promise from the Commonwealth that it will be rolled out on time ...

Drawing your attention to the NDIS in NSW
NSW Government, 12 February 2016
The National Disability Insurance Scheme (NDIS) is a vital reform that will give people with disability choice and control over their lives and the supports they receive.

Once fully rolled out around 140,000 people in NSW will receive support under the NDIS.

When and how people enter the scheme can be a bit complicated, so watch our short videoavailable on the homepage to learn more about when people with disability can access the NDIS ...

Documents reveal Treasury explored private funding for NDISDan Conifer, AM (ABC radio) 12 February 2016
Federal Treasury has investigated whether private investors could help bankroll the $22 billion National Disability Insurance Scheme. A Freedom of Information investigation by ABC News has obtained documents showing Treasury has explored shifting some of the scheme's cost to the private sector, through social impact bonds, particularly for children with developmental problems. Labor says it's not the time to change the scheme.
NDIS continues to deliver for Australians with disability
NDIS, 9 February 2016
The National Disability Insurance Scheme (NDIS) is providing assistance to more than 22,000 Australians with disability according to the National Disability Insurance Agency’s (NDIA) latest quarterly report.

The data comes from the report to the COAG Disability Reform Council for the December Quarter 2015, released today, which contains detail from the NDIA’s ongoing monitoring of the Scheme’s roll-out ...

State Disability Minister Martin Foley demands Federal Government lifts its game on NDIS
Mandy Squires, Geelong Advertiser, 11 February 2016
(Victorian) State Disability Minister Martin Foley has put the Federal Government on notice over delivery of the NDIS. Mr Foley said he would use a Geelong conference tonight to make his feelings known about the importance of the National Disability Insurance Scheme, and detail the failings to date of the Federal Government on disability reform ...

NDIA announces Local Area Coordination providers in NSW
The National Disability Insurance Agency (NDIA) has announced the appointment of two Local Area Coordination (LAC) providers for National Disability Insurance Scheme (NDIS) first year roll out areas in NSW. 
The selected LAC providers before and during the NDIS transition are the St Vincent De Paul Society and Uniting. These two providers – responsible for provision of LAC services from now until June 2018 – are far-reaching across NSW and have long standing experience in working with people with disability. 
LAC provides a vital function of the NDIS, with coordinators helping to streamline participants’ NDIS experience and assisting them to navigate the variety of NDIS supports for best outcomes. 
Coordinators will also raise awareness of the scheme and assist people to be ready for the transition while working with local communities and mainstream services to become more inclusive. 
Negotiations for a third provider of LAC services for the remaining Districts in NSW will commence shortly and arrangements for LAC provision beyond July 2018 will be finalised by the NDIA at a later date ... NSW Government NDIS web page, 4 February 2016
Michael Roberts, Community Care Review, 28 January 2016
Looking ahead to 2017, home care providers face new for-profit competitors, uncertainty as to client intentions, and serious financial and strategic challenges ...

Research update: supporting people with complex disability
Every Australian Counts, 20 January 2016
With the NDIS due to be rolled out in most states from July, new research highlights how we can make sure it provides the best support for young people with complex disability ...

Monday, 15 February 2016

National news

New Assistant Minister for Disability Services announced Both People With Disability Australia and NSW Council for Intellectual Disability have Jane Prentice MP (Ryan, Qld) as Assistant Minister for Disability Services,  at this 'important time in disability reform', the re-shuffled Federal Cabinet announced at the weekend.
welcomed the appointment of

Sri Lankan girl with Down syndrome receives temporary visa to live in Australia after Peter Dutton intervenes
Caitlyn Gribbin, ABC News online, 12 February 2016
A Sri Lankan girl who made headlines after being refused a temporary visa because she has Down syndrome will be allowed to live in Australia, after Immigration Minister Peter Dutton intervened in her case. 
Eliza Fonseka, nine, also found an unexpected ally in former Australian cricket captain Greg Chappell, who advocated for her to be granted the visa ...
Down Syndrome Australia – Media Release, 12 February 2016
Ruth Webber, CEO Down Syndrome Australia
DSA Welcomes Minister Dutton’s Intervention, however people with disability organisations call for removal of exemptions to the Migration Act. 
Down Syndrome Australia joins with the Fonseka family in thanking the Minister for Immigration, Peter Dutton, for his intervention that will allow Eliza Fonseka to come to Australia with the rest of her family. 
Angelo Fonseka was granted a Religious Worker Visa by the Department of Immigration to work with the community of Shark Bay in Western Australia. His wife and one of his children were also granted visas to come to Australia. However, his daughter Eliza was not allowed to join them – because she has Down syndrome.

Friday, 12 February 2016

Weekend reading and viewing: 13 - 14 February 2016

Alex McAuley, The Life That Max Built, 10 February 2016
... these things have been in spite of, and as a result of, having Max in our gang. Because after fearing it would be impossible, when it all falls into place, there are no words to describe the joy I feel. So the early anxiety makes the later success so much sweeter.

Hang in there, my friend. Listen to the advice you’re given, but keep an open mind about what you and your little one can achieve and enjoy together.

David Perry, Chicago Parent, 3 January 2016
... When I dropped him off on day two, one of his counselors sprang toward me, smiling, with a new plan. Instead of trying to bring Nico to a crowded table, she’d ask him to sit down first and then bring the other children around him. It worked ...

The great escape: people with learning disabilities on what they love best
Amanda Mitchison, The Guardian (UK), 6 February 2016
Lucie loves swimming, Mark is a keen dancer, and Charles likes to climb. Polly Braden spent two years photographing people whose lives have been transformed by one groundbreaking organisation ...

How Down syndrome prenatal screening’s administration is about elimination … and what’s needed to change that
Mark Leach, Down Syndrome Prenatal Testing, 11 February 2016
In her column in Forbes, Kavin Senapathy, a self-styled scientific mythbuster, took on claims that prenatal genetic testing has as its purpose eliminating those with Down syndrome. Unfortunately, her column retold myths and she based her mythbusting on fantasy ...

Local View: Ordinary children, extraordinary joy
J D Flynn, Lincoln Journal Star, 11 February 2016
... conclusions made in the absence of information can be very dangerous. For those who conceive children with Down syndrome, uninformed choices have life-long consequences. In the United States, approximately 60% of parents who receive a prenatal diagnosis of Down syndrome choose to terminate their pregnancy. They often make this decision without medical information, or a meaningful sense of what life is like for Americans with a disability. Even parents who don’t terminate still must often guess and conjecture, often in fear and misunderstanding, about how their lives will change because of children with Down syndrome ...

A Visitor Comes To Ruby's School
Dave Hingsburger, Rolling Around in My Head, 9 February 2016
... she recognized that the young boy in her classroom, talking for himself about his disability and me here writing this blog about my disability are members of the same community. That she sees the community and sees the connection pleases me no end. So many refuse to acknowledge the community, the kinship and the connection between disabled people - even many with disabilities, that her immediate, without question, ability to see how what that boy did there and what I do here are connected ...

People with disabilities are welcome at Mardi Gras

Sydney Gay and Lesbian Mardi Gras Parade is on Saturday 5 March 2016.

The full program of events, starting on 19 February is here.

People with disabilities are welcome at Mardi Gras
Matt Akersten, Same Same, 8 February 2016
The Sydney Gay and Lesbian Mardi Gras parade isn’t just about having some fun while covered in glitter, it’s an opportunity for people to feel connected and included, say the team at not-for-profit disability service provider Northcott. 
People with Disability Australia, the Cerebral Palsy Alliance, and Northcott are joining forces for a Disability Pride parade float and will be active at Fair Day too. 
“In 2016 we’d like to invite people with disability from far and wide to join us,” say the Northcott crew ...

Thursday, 11 February 2016

From the inside

While none of these articles references people with Down syndrome specifically, they each address real issues that can impact on any person with a disability during their every day life, and give insights into how it might feel and be understood by them. Such discussions can be confronting and difficult, - that doesn't mean we should avoid them:

Lucky to Be Alive: Zika Coverage, Ableism, and the Terror of Disabled Bodies
Karrie Higgins, Huffington Post, 5 February 2016
... In my newsfeed, headline after headline about Zika and abortion. Sentences like this one: "Zika could easily entrap American women in areas with standing water that breeds mosquitoes, closed clinics, no access to the later abortions a microcephaly diagnosis might require."


I have a neural tube birth defect, called Chiari Malformation. My cerebellum is falling through the foramen magnum. I have a too-small skull and a "screwed up," epileptic brain. What do able people think should have been required for me?

Able people pretend,
Of course we don't mean you! But they do. They do ...

Erica Mones, Running with Crutches, 4 February 2016
... Many articles write “Girl takes friend in wheelchair to prom,” and the comments section is spilling over with positive responses like “What a sweet girl,” or “What a lucky boy,” and what these commenters fail to notice is that they are promoting the stigma against disabilities in society. If an able-bodied girl asked her able-bodied friend to prom, people would not praise her for making her friend feel special; instead, they would just think that two friends are attending prom together. Noone would think the girl was missing the chance of having a “real” date to go with a friend. Disabled people deserve the same courtesy ...

Uncertain abilities and the right to fail
Real Social Skills, 18 January 2016
Being disabled often means being unable to reliably predict what you will and won’t be able to do. Or whether something will be hard or easy. Sometimes this is for physical reasons; sometimes it’s because of how people treat us; often it’s both ...

Is disability misery?
Ania Onion Cebulla, Alyssa and Ania Splain You a Thing, 8 September 2015
... We as a society have this concept that people with disabilities, especially those receiving disability assistance are lazy, sad, and pathetic. That they are deserving of pity. There is an underlying current of society that holds the belief that the words “I am disabled” actually mean “my life is not worth living”. In a culture that prioritizes what any given person can do, how productive they are, it is not surprising that this is the case ...

People with Down syndrome

Down’s Syndrome and Autism can’t hold Cookstown man back from Morocco adventure
Shauna Corr, Tyrone Times, 13 January 2016
A Cookstown man with both Down’s Syndrome and Autism is proving that being born differently-abled, doesn’t mean you can’t live life to the full. Christopher Graham, who works at Superstars Cafe in the town, is embarking on a three week road trip to bustling Marrakesh with his big sister Siobhan ...

MAX McAuley (6m 21s)
R.E.D. Inc. on Vimeo

Jack McKevitt: A Rising Star
Gautami Sithambaram, Colosoul, 3 February 2016
... Jack, who has Down syndrome, is an aspiring model and has recently finished two photoshoots: one covered by the Guardian Express and the most recent with Karrinyup Shopping Centre ...

Wednesday, 10 February 2016

Every Australian Counts roadshow: free NDIS information events

Join Every Australian Counts for a free NDIS Information Forum in the NSW regions where the NDIS is rolling out from July 2016:
Join us for a free NDIS information forum in the NSW towns and regions where the NDIS is rolling out from July - that’s just five months away! 
Find out: 
  • What the NDIS is, why we need it and what it means for you
  • The changes that the NDIS brings and how they will benefit you
  • How to access the NDIS and get the most out of it 
It will also be a chance to ask any questions you may have. 
These forums are for people with disability, their families and carers, people working in the disability sector and anyone else interested in all things NDIS. 
All our venues are wheelchair accessible and we can have Auslan interpreters if you need them. Just include all your requirements when you book so we can make sure they are available.
Morning and evening sessions are offered at each location. Book online:

Campbelltown, NSW:  Monday, 22 February 2016 
Parramatta, NSW:  Thursday, 25 February 2016
Bankstown, NSW:  Tuesday, 1 March 2016
Tamworth, NSW:  Thursday, 3 March 
Blacktown, NSW:  Friday, 11 March 
Hornsby, NSW:  Tuesday, 22 March 
Gosford, NSW:  Wednesday, 23 March 
Bega, NSW:  Wednesday, 30 March 
Goulburn, NSW:  Thursday, 7 April 

Kosciuszko to Coogee, 2016

The first 800 km Mt Kosciuszko to Coogee Beach (K2C) fundraising bike ride for Down Syndrome NSW was held in 2015. It was so much fun and such a success that Lance Mitchell and his team are doing it again:

In March 2016 a small group of everyday heroes will ride from the summit of Mt Kosciuszko to Coogee Beach in support of the Down Syndrome community in NSW.
K2C is different from other charity events. 
We aren't entrepreneurs, athletes or heavily supported by corporate sponsors, we're mostly just truck drivers and tradies, jumping on a bike for a marathon ride... Because we can. Because every little bit helps. 
We don't ask for donations year round, it's just the next 6 weeks while we slog it out to make a difference in the lives of others. This is about opportunity, about equality and about positive public awareness. It's about helping those in need, who despite trying to help themselves to the best of their ability, find themselves on an unjust and un-level playing field. 
We're also talking about their families and loved ones, the organisation that supports them, entire communities of so noticeably happy and proud families, trying their best, and proud of their best. 
Be a part of something awesome this year, get behind Evan, Shane and Leigh and donate to K2C.
Follow along with the preparations and progress of the epic ride via the K2C 2016 Facebook page.  K2C events page.

Tuesday, 9 February 2016

New book: 'Here to Stay'

Eleanor Bailey is on the cover.
Here to Stay: Americans with intellectual and developmental disabilities, Michael T Bailey, February 2016
People with intellectual disabilities are virtually absent from American history. Why? Where are their voices? Why institutions? Why eugenics? Are things getting better? What is the future? These and other issues are addressed as well as commentary on the history of the US, exclusion and steps to gain real membership in the American dream.

Michael T. Bailey is past president of the National Disability Rights Network as well as Disability Rights Oregon. Author of Special Education: A Parent's Guide to a Child's Success. A member of ADAPT he is the father of a young woman with an intellectual disability. (Publisher's note).
Here to Stay is widely available from online booksellers. A Kindle edition will be available soon.

Added 25/02/2016: Here to Stay is now available for Kindle, from the Amazon Australia online store.

What's it like for people with intellectual disability to live in their own home of their choice? CDS information event

Monday, 8 February 2016

2016: language still matters, everywhere

Zika, Abortion and Disability Rhetoric
David M Perry, How Did We Get Into This Mess? 4 February 2016
The discourse around Zika has included a constant barrage of ableist language in which reproductive rights advocates suggest that a disability like microcephaly naturally means a mother would want to terminate ...

Disability, Language, and Empowerment
Dorodi Sharma (guest blogger), Kafila, 3 February 2016
... even in the 21st century we need to coach people on ‘interacting’ with a section of humanity. The discourse on importance of language has taken a new meaning when recently Prime Minister Narendra Modi called people with disabilities ‘divyang’ or people with divine abilities. The reaction to this has been outrage, to shaking of heads, to complete indifference ...

Channel 4 to launch 'year of disability
Jasper Jackson, Channel 4 (UK) 19 January 2016
Channel 4 is launching a “year of disability” to increase representation of disabled people in broadcasting including a commitment to double the number of people with disabilities appearing in its 20 most high-profile shows such as Googlebox and Hollyoaks ...

People first vs identity first: a discussion about language and disability
Shawn Burns, Croakey, 23 January 2016
In Australia we are used to using ‘people first’ language (‘a person with autism’), to identify people with disabilities. However, in other places, such as the UK, ‘identify first’ terminology (an ‘autistic person’) is preferred. Both types of language have been suggested and are supported by communities within the disability sector and there are strong feelings about which is more appropriate and reflective of the views of people with direct experience of disability ...

Service, Support and Success, Volume 5, Issues 1 and 2

Service, Support and Success is a monthly newsletter designed for direct support workers supporting people with intellectual and developmental disabilities. It is published by Vita Community Services (Toronto, Canada), under the editorship of Dave Hingsburger and Angie Nethercott, and is freely available online.
Volume 5 - Issue 1 : Resolved: Change the World, Dave Hingsburger, 1 January 2016
New Year’s, for many, is a time when resolutions are made and, usually quickly thereafter, broken. Even so, some do succeed. Some make a decision, stick to it, and change their lives. This issue begins our 5th year of publication and, in talking about it, Angie and I decided to mark this milestone by telling you three stories. Each of these stories will illustrate how we all, in our work with people with disabilities, can, if we choose to, change the world. We can have an impact that is much greater than we imagine and, if we put our minds together and act as a group purposefully, what we achieve can be nothing less than world changing ... 
Volume 5 - Issue 2: Let's talk... about mental health and developmental disabilitiesYona Lunsky,   Rob Balogh, Kristin Dobranowski,  Avra Selick,  Elizabeth Lin, 1st February 2016
The Bell Let’s Talk campaign suggests 5 ways to end the stigma around mental illness: • language matters, • educate yourself, • be kind, • listen and ask, and • talk about it ...
Service Support and Success is well worth the (free) subscription or a bookmark if you work with or are interested in supporting people with intellectual disability.