Address details

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

Tuesday, 31 May 2016

NSW Council on Intellectual Disability - updated commentary on NSW services transfer

Transfer of NSW government disability services to the non-government sector
NSW Council on Intellectual Disability, 30 May 2016
NSW CID and other major organisations released a position statement in May spelling out what we see as needed if the NSW Government’s process for tendering out its services is going to work satisfactorily for people with disability and their families ...

Also in May, ADHC released its call for expressions of interest from service providers wishing to tender for ADHC services.

NSW CID welcomes that this information is now available and that the tender aims to continue at least to 2018 a range of very important services for people with complex needs, for example the Statewide Behaviour Intervention Service. We are pressing the NDIA the urgency of it having a clear plan for meeting complex needs including maintaining the role of services like SBIS.

We are very concerned about some of the NSW government's plans including the large size of the groupings of services that will be tendered out ... read on here.

New resources from UK to support people grieving

New resource in 'Breaking Bad News' portfolio
New guidelines have been released on the UK Breaking Bad News website, on talking about death to people with intellectual disability:
On this downloadable sheet you can fill in someone’s current ‘framework of knowledge’, describing a singular chunk of knowledge in each empty box. You can also describe the chunks of knowledge that need to be added.
Earlier posts on resources from this project are here (2012) and here (2013)

Managing Grief Better: People With Intellectual Disabilities
Prof Sheila Hollins, Intellectual Disability and Health, February 2016
It is imperative that all people, including those with learning disabilities, are able to access the supports given in their culture to understand death and loss.
  • This article is a substantially re-written version of one that appeared in The Habilitative Mental Healthcare Newsletter, May/June 1995, Vol. 14 No. 3.

Monday, 30 May 2016

The reviews are in ...

Speed of Life: review
Dee Jefferson, Timeout Sydney, 27 May 2016
... The imagery in the show ranges from the epic (constellations, oceans, the imagery of war) to the comic and quotidian. Video segments introduce us to several other characters, from the Epic Arts ensemble in Cambodia, and show moments from Ruckus's residence there.

The patchwork structure of short, disparate scenes in Speed of Life allows each performer's perspective to be expressed idiosyncratically: Gerard performs a comic and yet unsettling and occasionally slapstick routine of "rushing"; he and James talk about jobs they've had – cleaning toilets at Maccas, sweeping and moping at Harris Farms. Again, it's comic with an undertow of frustration ...

Pete's work up with the greats
Hornsby and Upper north Shore Advocate, 26 May 2016
Local Studio A artist Peter Dudding in breaking down boundaries in the art world - becoming the first artist with an intellectual disability to be exhibited at Wolloomooloo's Firstdraft Gallery.

Artistic Director Gabrielle Mordy said 250 artists applied for the exhibition and Peter was one of only 20 to be accepted.

Pig Dog is Peters' first solo exhibition," Ms Mordy said. "Pig Dog was curated by Sydney painter Paul Williams. Paul has been painting with Pete at Studio A since 2015, they have a real synchronicity in their abstract expressionist style."They also share a very mischievous sense of humour spending much time laughing at their own jokes."

At the exhibition Dudding sold half of his paintings.
"Peter seems to have thoroughly loved the experience of exhibiting and selling his work," Ms Mordy said. "His family and friends attended the opening, and Peter also bravely participated in Firstdraft's artist talk program.

Dudding said he 'felt like a superstar' during the exhibition of his work.

"I enjoyed the talks because I also got to make a drawing in front of everyone," he said. "I am looking forward to bigger works, collaborating with Paul Williams."

He has now returned to the studio space at Studio A to continue his career as an artist and is preparing for his next exhibition.

On education and schooling

There is no shortage of discussion about how students with disabilities should be educated. Half way through the school year is  good time to assess how things are going, and how they might change:

Less is more: the education assistant - practical tips for teachers no.3
Catia Malaquias and Dr Robert Jackson, Starting with Julius, 27 May 2016
... An education assistant can be an invaluable resource in the classroom to support the teacher to include a student with disability. They can assist the class teacher to provide a great educational experience to all students as well as increase the independence and social connection of the student with disability ...

Inclusion At All Costs?
Linda Graham, 16 May 2016... In his TES (Times Education Supplement) article, Tom (Bennett) criticises something he calls “Inclusion At All Costs” (IAAC). This is not something with which I am familiar, perhaps because it is not a real policy and no one has ever advocated for it. ... I can understand where Tom is coming from and have no doubt his frustration resonates with a great many teachers. But, there are a number of problems with his article, as well as the Secret Teacher piece, that I feel duty bound to point out. These problems revolve around the uncritical use of words like “mainstream”, the way that inclusion is being conceptualised, and the conflation of equity and equality ...
Friends fight school for boy with Down syndrome 
USA Today, 16 May 2016
Brady was going to be moved to a school with a program for students with special needs, even though he was thriving in a class with his friends. His friends petitioned the school system to let him stay in their class. (47 s video)

Jennifer Kurth, Swift Schools, 2015
Despite the positive effects of inclusion, students with extensive and complex support needs are all too often relegated to self-contained, segregated classrooms with little to no access to the general curriculum ... Why does segregation persist, then, in light of the compelling benefits of inclusive education? The answer to this question is elusive, but seems to reflect a general sentiment that a continuum of placements is necessary and appropriate, and that, in fact, some degree of restrictiveness is appropriate for students with disabilities ...

Friday, 27 May 2016

Weekend reading, viewing and listening: 28 - 29 March 2016

Nothing has changed about Down syndrome, except how the world treats those with it
Mark Leach, Down Syndrome Prenatal Testing, 19 May 2016
This past Saturday, our family got to experience something that would have been unimaginable when I was born. It shows nothing has changed about Down syndrome, except the way the world treats those with Down syndrome ...

Down's Syndrome: It's Just Two Words
The Untold, BBC Radio, 16 May 2016 (MP3 file 28 minutes)
Salma is having a baby, but as the due date draws near she's forced to confront unresolved issues with her last pregnancy: her baby was born with Down's syndrome and she's yet to tell her in-laws ... The shock of the diagnosis and the way Salma was given the news contributed to a long period of struggle and shame ...

Prenatal Diagnosis of Down Syndrome: What I wish I could tell my patients
An Unexpected Journey, 18 May 2016
Please allow me to introduce myself. I am a family doctor (GP) working in the UK. I am also mother to three children aged 8, 6 and 5. My children are full of energy, love and mischief. My youngest daughter also has Down syndrome.

You have just been told that your unborn child has Down syndrome. Somebody used those words, that I once studied in my text books about your unborn child ... The are many good, factual resources, explaining the medical implications of being born with Down syndrome. My concern is these only tell part of the picture ...

Jamie Brewer on Studio 10
Studio 10, 23 May 2016 (6 m)
We were so happy to welcome Jamie Brewer on the show today, who made history when she became the first woman with Down syndrome to walk in New York Fashion Week.

Hey “Special Needs Parents”! Where’s The Outrage Over “Me Before You”?
Meriah Nichols, Two Thirds of the Planet, 25 May 2016
... There have been a lot of posts in the disability community (see end of this post for some links) over this particular new gem of a flick, but I haven’t seen one from a parent of a child with a disability, a “special needs parent” as many like to call themselves. And I kind of wonder… why?

Worker, not carer
Susan Wallis, Clickablog, 25 May 2016
You’re a worker, not a carer.I’ve just had a discussion in a closed Facebook group about the term carer versus worker. A disability support worker had described themselves as a ‘carer’ and I couldn’t help but correct them ...

Arts news and information

Lots of activity in the arts:

Actress Jamie Brewer advocates for increased diversity and inclusion in film and television
Monique Shafter, 7.30 (ABC TV), 26 May 2016 (6 m, video and transcript)
Fans of TV series American Horror Story would know actress Jamie Brewer who played 'Addie', a character with Down syndrome. Having Down syndrome herself, she is an advocate for increased diversity and inclusion in film and TV ...

Accessible Arts, the peak body for arts and disability in New South Wales has launched a new website. Visit it regularly for news, information, events and opportunities.

Front Up - call for professional and emerging artists with disability
Front Up is now looking to recruit artists with disability to take part in this innovative community Arts and Cultural program. We are looking for artists who want to take their careers to the next level in becoming future arts and cultural leaders including involvement in programs based in Western and Metropolitan Sydney ...
  • Applications close 13th June 2016
Bus Stop Films, 29 April 2016
A significant development for Bus Stop Films.

Thursday, 26 May 2016

Some thoughts and practicalities on dual diagnosis - Down syndrome-autism

It is estimated that 7 - 10% of people with Down syndrome also have autism:

How to survive a dual diagnosis
Jerry Davich, Chicago Parent, 18 April 2016
Hearing the words "dual diagnosis" can be frightening for parents of a child with special needs, especially if they are already struggling to deal with an initial diagnosis.

"It was like we were reliving our life five years ago when we received my son's prenatal diagnosis," says Missy Gallagher, whose son, Finn, has Down syndrome ...

The Down Syndrome - Autism Connection recently drew attention to Bonnie Zampiro's 2015 article (about the reality of living with autism for some people and their families) as applying equally  to those with a dual diagnosis of Down syndrome and autism. Her follow-up article expands on practical strategies to promote inclusion:

My Son Has the Kind of Autism No One Talks About
Bonnie Zampiro, Huffington Post (blog) 28 September 2015
... The media shows us all of the feel-good stories, like the child with autism who gets to be the manager of the high school basketball team, or the boy with autism who goes to the prom with the beautiful girl, or the girl with autism who is voted onto the homecoming court. We light it up blue every April and pat ourselves on the back for being so aware.

But we aren’t aware ...
Bonnie Zampiro, Huffington Post (blog), 2 October 2016
... those who commented showed me that I was wrong. You are aware. You are aware of autism. You just don’t understand it ... 

What if I told you that both of us — you, with your typically functioning child and me, with my child with autism — could both do things together that would benefit the wellbeing of our children and that would enable all of our children to grow up to be their very best?
We can... if we want to. Many of you asked me for solutions. I have several ...

Wednesday, 25 May 2016

Health news and information

Lindsay Kalter Boston Herald,  21May 2016
Massachusetts General Hospital will soon launch the first ever “virtual clinic” for people with Down syndrome in an effort to reach patients who do not have access to local clinics and relieve overwhelmed primary care physicians.

“It’s really going to transform the way we’re able to deliver health care to people with Down syndrome and other disability populations,” said Dr. Brian Skotko, co-director of the MGH Down Syndrome Program. “The modern day primary care physician maybe only has one or two patients with Down syndrome, and it’s unreasonable to expect them to stay up to date on research for the conditions of all of their patients.” ...

Elaine Keogh, Irish Independent, 9 May 2016
The mother of an 11-year-old boy who has Down Syndrome, arthritis and is non-verbal has told how he was "in pain for years and we did not know" ...
  • See this recent post for a research article on children with Down syndrome and arthritis
Dr. Brian Skotko and Melissa Reilly, Sargent College 8th Annual Meredith E. Drench Lecture, 3 May 2016
The Meredith E. Drench Lecture, Sargent College’s first endowed lecture series, was established by physical therapy alumna Dr. Meredith E. Drench to share her passion and belief in the “compassionate rehabilitation” of the whole person. The 2016 lecture, “Keeping Children and Adolescents with Down Syndrome Healthy: Medical Updates for Health Care Professionals” was delivered by Dr. Brian G. Skotko and Melissa J. Reilly ...

Kevin Deane, Medscape, 25 February 2016
Adult Down Syndrome Clinic referenced this article with this comment on Facebook on 4 March 2016:
Here is an interesting correlation - gout and sleep apnea. Both gout and sleep apnea are more common in people with Down syndrome. This information indicates a potential causative link between sleep apnea and gout. 
Gout is caused by an elevated uric acid level which is a by-product of the break-down of purines. Uric acid can deposit in joints causing inflammation and gouty arthritis. It can deposit in other locations as well such as the kidneys causing kidney damage or kidney stones. 
If you have gout or sleep apnea, consider testing for the other
Nature (Genetics in Medicine, 1 April 2016
Genetics in Medicine's podcast discusses the distribution of cancers by types and ages in people with Down syndrome in Denmark.

People with Down syndrome in the media

Old-fashioned Gold Coast coming-of-age ceremony still a hit for Queenslanders with disabilities
Tom Forbes, ABC News, 21 May 2016
... "I'm proud of myself, that's how I feel." (Taylor Anderton's) debutante partner was her fiance Michael Cox, 24, who travelled from Brisbane to attend many of the rehearsals ...
  • Includes video from Australia Wide.
California Woman with Down Syndrome Fulfills Dream of Becoming a Zumba Instructor
Tiare Dunlap, People, 16 May 2016
... Now, as the first Zumba instructor with Down syndrome in the United States, Arescurenaga regularly teaches around California. Last week, she and her mom traveled to Anchorage, Alaska, where she led two days of dance classes ...

Young man with Down syndrome becomes youngest business owner in his town
ABC 7 (US), 2 May 2016
Blake Pyron, 20, is the youngest business owner in the town of Sanger, Texas, and the only one with Down syndrome ... When Blake Pyron was born, his mother said that she, like many mothers of children with Down syndrome, was told there'd be many things he wouldn't be able to do. On May 7, Blake, now 20 years old, will open his own snow cone shack.
Heather Waliga, ABC 11, 4 May 2016
Paul Kocher walked confidently into his new role Wednesday morning at the North Carolina General Assembly wearing a brand new blazer and carrying a briefcase ... As he neared the end of his first day on the job, it became evident Kocher's new position was a perfect fit ...

Tuesday, 24 May 2016

Challenges to representation of disability in arts and media ... on radio and social media

More disability, arts and media news, firstly from Nathan Basha - be quick, the audio file is available only for 7 days. The interview runs for a substantial 12 minutes:
I had the pleasure of joining my colleague and mentor Genevieve Clay-Smith from Bus Stop Films on Mornings with Wendy Harmer on ABC 702 (radio) yesterday (23 May). 
We were talking about the work Bus Stop Films undertakes around inclusive film making and how we can and need to get more job opportunities for people with disability in the Film Industry.  
Listen to the interview here - we are on at about the 1 hour 41 minute mark.
You can move the audio file slider directly to the 1 h 41m mark to hear the interview.

Not only do we want to see more representation of people with disability on film it needs to be done well. This recent Twitter Q &A about the yet-to-be-released feature film 'From Me to You' exemplifies how not to do it, and how people with disability can use social media to challenge the inherent ableism in the film:

Sam Claflin Ends Twitter Chat on #MeBeforeYou - After Disability Activists Fight Against the Film's Ableist Message
Dominick Evans, Storify, 23 May 2016
May 23, the official @MeBeforeYou film Twitter account announced that actor @samclaflin would be hosting a twitter chat, and disabled activists from around the world showed up to challenging the harmful messages and assertions this film makes. 
These messages include:
- Disabled people cannot have healthy, intimate relationships
- Disabled people's deaths benefit non-disabled people
- Disabled people are better dead than disabled ...

Added 25 May 2016:

Spare me, “Me Before You”: Hollywood’s new tearjerker is built on tired and damaging disability stereotypes
Emily Ladau, Salon, 24 May 2016
The love story of a suicidal quadriplegic and his young aide is the latest to objectify disabled people ...

"Ableist, Stereotypical, and Offensive" or: Why I Hate "Me Before You" 
(15m 15s)
Dan Harvey, 24 May 2016
Thirteen years ago today, I sustained a spinal cord injury, and began living my life as a person with quadriplegia. Ten days from today, on June 3rd, "Me Before You" -- a film that features a character with a spinal cord injury -- will be released in theatres across North America. To celebrate my anniversary, I made this to explain why "Me Before You" is offensive, ableist, and perpetuating negative stereotypes about disability.

RUCKUS Ensemble in the news

RUCKUS Ensemble has had some well-deserved press this week, in the lead up to the debut of their latest production, Speed of Life tomorrow evening, including great photos and video. The first link includes reference to the possible impact of recent cuts to arts funding for this troupe of performers who all have Down syndrome :

Disability-led troupe Ruckus turns their eye towards the Speed Of Life in fresh show at new home
Chris Hook, Daily Telegraph, 19 May 2016
Sydney performers with disabilities to open new show this week
Ehsan Knopf, 9News, 22 May 2016

Monday, 23 May 2016

Easy read voting kit

ACT - based Advocacy for Inclusion has updated its easy read Voting Kit for the Federal Election called for 2 July 2016.

The information is available to read online, or to download as Word or .pdf documents.

Friday, 20 May 2016

Weekend reading and viewing: 21 - 22 May 2016

I finally understand how inspiration porn hurts kids like mine
Maureen Wallace, She Knows, 18 April 2016
My journey as a parent of a child with a disability has been a series of blessings, mistakes and good intentions. I’d say the same about my experience as a writer focused on parenting a child with a disability. I’ve learned much in these brief six years; above all, I’ve learned there’s much more to learn.

I’ve also learned a little about grace and allowing myself time to learn. Life doesn’t offer a six-week night course in disability 101. Until I had someone in my life with a disability, until the experience became as personal as motherhood can be, I just bopped through life hoping to get it right, hoping not to offend anyone in general ...

Baseball and Brothers - Good Journalism on a Celebrity and a Disabled Sibling
David M Perry, How Did We Get Into This Mess? 16 May 2016
The celebrity with disabled sibling genre of story tend to be pretty awful ... Adam Newman, however, directed me to this story about a young player for the Dodgers and his older brother, Champ, who has Down syndrome ...

When professionals assume that parents of disabled kids see ghostsSocial Skills for Autonomous PeopleIn the special needs service provision community, there is a strongly held narrative about what happens when a kid turns out to be disabled. This narrative causes a lot of problems ...

Raising a Child with Down Syndrome Isn't as Hard as I Feared
Amy Julia Becker, Parenting, 14 November 2015
I'm not working harder to be a good mom for my child with Down syndrome than I am to be a good mom to my other two kids ...

Whose Story Is It?
Dave Hingsburger, Of Battered Aspect, 18 May 2016
... I finally asked the fellow for permission to speak to his staff. She was a little shocked at the idea that he had permission giving power, but smiled benignly, a skill we all learn within weeks of employ. I said to her, "He really needs your help to get this story out. He needs your silence. Every time you interrupt to help, he has to clarify what he was saying as different from what you are saying. It's his story, let him tell it." ...

Influenza vaccination recommendations

Specific recommendation for flu vaccination for people with Down syndrome and their carers, issued by the Australian Department of Health in April 2016:

4.7 Influenza (page last updated: 08 April 2016)

Persons at increased risk of complications from influenza infection
Persons aged ≥6 months with conditions predisposing to severe influenza, such as:
... Down syndrome – Persons with Down syndrome should receive annual seasonal influenza vaccine whether or not they have congenital heart disease. This is due to the presence of anatomical abnormalities, which put them at increased risk of upper respiratory tract infections, as well as a high prevalence of other medical conditions that put them at increased risk of severe influenza.
Persons who may transmit influenza to persons at increased risk of complications from influenza infection
The following groups of people can potentially transmit influenza to persons at increased risk of complications from influenza infection; vaccination of these groups is therefore recommended to protect those at risk:
... household contacts (including children ≥6 months of age) of those in high-risk groups, including providers of home care to persons at risk of high influenza morbidity

In addition, vaccination is recommended for 'residents ... of long-term residential facilities, ... due to high rates of influenza transmission and complications during outbreaks in such facilities.

Thursday, 19 May 2016

Research news and commentary #5 for 2016

Everybody counts: Maths teaching for children with Down syndrome
Research Developments - Australian Council for Educational Research, 21 March 2016
Students with Down syndrome are increasingly experiencing education alongside their peers in inclusive mainstream classrooms, and the latest Australian research indicates that these students can learn a great deal of mathematics in primary school with good teaching and the right support.

Research by Dr Rhonda Faragher and Professor Doug Clarke from Australian Catholic University and Associate Professor Barbara Clarke from Monash University, facilitated by ACER, investigates the practices of teaching teams working in inclusive mathematics education settings. Their research has found that students with Down syndrome can learn and become more confident with mathematics when educators are able to provide appropriate teaching and support ...

High Risk of Arthritis in Down's Syndrome
Nancy Walsh, MedPage Today, 2 May 2016
Children with Down's syndrome should have an annual musculoskeletal examination because of their increased risk of developing arthritis, an association that is widely under-appreciated, a researcher said here [British Society for Rheumatology Conference, Glasgow, 26-28 April 2016] ...

Wednesday, 18 May 2016

Books for children addressing inclusion

A useful list of children's books:

11 books that teach inclusion
Meg Kehoe, Romper, April 2016
A child's education starts at home. From what they see and hear in their household, to the lessons their parents teach them, to the books their parents read to them. You begin teaching your child lessons before they even realize they're lessons at all. Important things like acceptance, diversity, feminism, love, friendship, kindness, and inclusion, all have seeds planted at an early age. There are children's books out there for every topic you could ever want to breach with your child, and there are plenty of children's books that teach inclusion ...

ACO 'Move' 2016 - applications now open

The much loved program Move, hosted by the Australian Chamber Orchestra is open for applications for five sessions to be held in June and July 2016, at the ACO Studios, Circular Quay:
As part of the ACO’s commitment to developing new initiatives for people with disability, we are hosting ACO Move, a series of classes integrating movement and live music. 
Participants work with arts facilitator Dean Watson, ACO musicians, a percussionist and support staff through a series of task-related exercises designed to develop movement responses to music. 
Classes are free of cost and held at the ACO Studio - a safe and inclusive environment - and participants must be available to attend all 5 sessions.

Tuesday, 17 May 2016

Radio interview: remarkable parenting

Sue and Neil Coutts from Martins Creek (in the Hunter region) have opened their home to over 55 children in the past 20 years ... that's on top of raising their three biological children. They spoke to Ben Millington on 1233 (Newcastle) Mornings yesterday, to highlight the need for foster parents in NSW. 

Sue and Neil have cared both short and long term for a number of children with complex health care needs and disabilities. Their very strong and successful advocacy for their daughter Sarah to remain at the local primary school into her high school years because of her fragile health, was well supported by the local community and press as you can see from previous posts here and here. Sarah died at 14 in 2010, and Sue and Neil are now foster parents to two young sons with Down syndrome. 

This excellent interview is 14 minutes long, and well worth the time to listen, and contemplate the remarkable parenting of two of the most grown-up people you will ever hear.

News and commentary on the NDIS (48)

NDIS and Me
People with Down syndrome and/or their families and carers can join the closed Facebook Group, NDIS and Me,  for discussion specifically about the NDIS and people with Down syndrome:

How to nominate NDIS as an issue of interest on Vote Compass
NDIS and Me, 14 May 2016
Did you know that nothing to do with the NDIS even rates a mention in any (Federal Election 2016) Polls so far?

There's one way to help the NDIS get attention and discussion - enter it into your Vote Compass.

After answering the Vote Compass questions, you will come to a question where you can type in the issue which is the most important to you. This is where you would type in NDIS.

Australia Votes 2016 - Vote Compass - ABC News

Vote Compass is an educational tool developed by political scientists designed to help you explore how you fit in Australia’s political landscape.

NDIS supporting close to 25,000 people with disability
National Disability Insurance Scheme, 6 May 2016
Close to 25,000 Australians with disability are now receiving the supports they need to live more independent lives, according to the latest quarterly report from the National Disability Insurance Agency (NDIA).

The report to the COAG Disability Reform Council for the March Quarter 2016, released today, shows the Scheme remains on time and on budget, having delivered $1.96 billion worth of funded support to NDIS participants.

NDIA Chief Executive Officer, David Bowen said with less than two months until the NDIS begins to be rolled out across the country, the report showed the Scheme was well placed to welcome new participants from 1 July ...

NDIS April 2016 e-Newsletter

Disability Loop eNews Issue #14, 19 April 2016

NSW ADHC Transfer Update
NSW Council for Intellectual Disability via Facebook, 28 April 2016
Minister for Disability Services, John Ajaka has announced today details of the expression of interest process for the transfer of ADHC services to the NGO sector in the 14 page document, Specialist Disability Services PreEOI Release ...
Calling for the NDIS to be more accountable to Aboriginal and Torres Strait Islander people
John Gilroy, Croakey, 29 April 2016
The National Disability Insurance Scheme (NDIS) may bring valuable opportunities for Aboriginal and Torres Strait Islander people with disabilities, but some important questions have arisen around accountability, according to Dr John Gilroy, from the Centre for Disability Research and Policy at The University of Sydney ...

ACT to reap economic benefits of NDIS, report finds
Alexandra Back, Canberra Times, 14 April 2016
The National Disability Insurance Scheme will create an "employment boom" in the ACT and add up to $367 million to the local economy, a report has found ...

5 Top Searched NDIS Services on
11 April 2016
March was an absolutely amazing month here at In only our second month live and three months since we started this journey, it’s incredible to see thousands of people coming to find, review and recognise great NDIS care providers. We also passed more than 2300 provider services listed across Australia and look forward to that number continuing to grow with Queensland signing on to NDIS and major rollouts to more regions in 2016 ...

Monday, 16 May 2016

News and commentary from the broader disability community

Next Steps on Inclusion
Simon Duffy, Centre for Welfare Reform (UK), 2016
... The first step to inclusion is to leave behind tired prejudices. We don’t have to believe that clever people are better than other people. We don’t need to value one kind of beauty. We don’t need to keep chasing money and power. We can choose love, acceptance and diversity. These values may not be dominant - but they still exist deep within us - because we each know our own frailty, vulnerability and need for love and meaning ...

Choice and control: social care must not disable people with intellectual disabilities
Val Williams,  British Politics and Policy blog (London School of Economics and Political Science), 8 March 2016
People with intellectual disabilities should not have to prove their abilities in independence skills before having the right to live the life they want, argues Val Williams. Policy should allow for a personalised focus on the identity of an individual, with personal assistants able to step back and facilitate choice. Inclusive research helps build up this attention to detail in a relationship and can highlight how shifts might occur from being mutually supportive to becoming defensive, judgemental or even abusive ...

Don’t Say Rainbows 
Sophie Trains, Respectfully Connected, 20 February 2015 
I am a rather quiet advocate. I don’t often get into debates and generally avoid conflict (in real and online life). I usually have a pacifist or diplomatic approach. However this doesn’t mean that I don’t hold strong opinions and sometimes I do get sucked into an argument when I just can’t ignore ableist or ignorant comments any longer ...

NFP Panel Sets its Sights on Collaboration
Lina Caneve, ProBono News Australia, 14 April 2016
A collaborative panel made up of eight Not for Profit peak bodies and supported by philanthropic funding is spearheading projects aimed at building capacity in the aging, disability and mental health sectors ...

Disability Representation and the Problem with “Inspiration Porn”
Keah Brown, The Toast, 14 April 2016
... Sometimes I feel guilty, cowering under beady eyes. I feel guilty for the desperate way in which I do desire to explain myself to complete strangers, and then I remember that I shouldn’t have to ...
Genevieve Belmaker, Nieman Reports, 30 March 2016
When people with disabilities are portrayed as only heroes or victims, it's harder to address the issues that affect them ...

... he came across a newswire story about a labor case involving a group of men with intellectual disabilities. The facts of the case: 32 men with disabilities, working for the same wage for 35 years, $240 million in damages. “What the heck are we talking about here?” Barry recalls thinking.

... Barry called the lawyer on the case to find out more—and also to ask about speaking with the men. The lawyer’s response was surprising: Not a single reporter had ever asked to speak with the men before ...

How the justice system fails people with disability - and how to fix it
Eileen Baldry, ABC Ockham's Razor, 18 April 2016
More than 30,000 Australians are imprisoned every year. Many have disabilities, many are Indigenous - and the system cannot cope ...

Friday, 13 May 2016

Weekend reading and viewing: 14 - 15 May 2016

Amy and Sarah Interview

What do you see?
Michelle Mahnke, 26 April 2016
... I sometimes wonder what my kid’s days are really like when she is away from me. Not as recorded in an IEP ...  Not filtered through someone else’s report. I want a chance to simply stand by and watch, undetected, as my child goes about her day. I want to see what my child with Down Syndrome sees. One day, I had that chance ...

Dear Special Needs Mama, I Celebrate You
Ellen Stumbo, 7 May 2016
Having a child with a disability can make life different from what other moms of typical children experience. On a day like Mother’s Day, while friends receive cards from their kids, breakfast in bed as a result of the loving attempt from little chefs, and homemade gifts, your heart yearns for the day you hear your child say the words, “I love you,” or a day with no medical complications, or to have someone come along your side and remind you that you are not alone ...

“What’s wrong with that boy?” 6 ways to talk to your kids about disabilities
Katy Epling, Huffington Post (blog) 11 May 2016
... I want to hug every curious child and every well-intentioned parent. I want them to know their questions are OK. Better than that, they are good. We should ask questions and start a dialogue instead of avoiding and allowing confusion and fear to grow ...

Next Steps on Inclusion
Simon Duffy, (UK) Centre for Welfare Reform, 2016
... The first step to inclusion is to leave behind tired prejudices. We don’t have to believe that clever people are better than other people. We don’t need to value one kind of beauty. We don’t need to keep chasing money and power. We can choose love, acceptance and diversity. These values may not be dominant - but they still exist deep within us - because we each know our own frailty, vulnerability and need for love and meaning ...

Have your say on a new integrated carer support service

From the Department of Social Services:

The Australian Government is developing an Integrated Plan for Carer Support Services to better support and sustain the work of unpaid carers.

The first stage of the Plan included design and implementation of Carer Gateway. Established in December 2015, Carer Gateway is a national website and contact centre that provides carers with practical information and support and helps them connect with local support services.

An important second stage of the Plan involves developing a new integrated carer support service system through a co-design process.

The purpose of the new service system is to deliver supports that reduce carer strain, increase carer well-being and support them to continue in their caring role.

A draft Service Concept was developed through research, co-design workshops with carers, and input from subject matter experts and the Carer Gateway Advisory Group.

The draft Service Concept sets out the types of services that could be delivered under a future service delivery model.

We want to hear your views on the draft Service Concept.

Thursday, 12 May 2016

Swallowing difficulties: awareness and information

Yesterday (11 May) was the first Swallowing Awareness Day organised by Speech Pathology Australia.

Swallowing difficulties are common for people with intellectual disability, including those with Down syndrome of all ages. Assoc Prof Bronwyn Helmsley from the University of NSW has written about swallowing difficulties for the NSW Council for Intellectual Disability:

You can also listen to the articles from the link on the page.

Speech pathologists are one of the main health professionals working with people who have swallowing difficulties.

Swallowing difficulties are also called “dysphagia” (pronounced dis-fay-gia) as this means ‘disorder of swallowing’.

You can find out more about the awareness day here

'American Horror Story' star Jamie Brewer in Sydney

Actor Jamie Brewer will be visiting Sydney later this month for Bus Stop Films. During her visit there will be two opportunities to meet her and/or hear her speak:

Afternoon tea with Jamie Brewer - an invitation to Down Syndrome NSW members with Down syndrome
  • The invitation to an afternoon tea at Annandale on Sunday 22nd May is published on the DS NSW Facebook page. The first 35 people to respond will have the opportunity to meet Jamie, a strong advocate for including people with Down syndrome in everything.
  • Click on this link to secure your place.

Screen NSW, AFTRS and Bus Stop Films work together to make disability count on Australian screens

The Australian Film and Television School (AFTRS) and Screen NSW have joined with Bus Stop Films to foster pathways for people with disabilities to work in the Australian film and television industry.

Jamie Brewer, the American actress best known for her roles in the Emmy award winning hit TV series American Horror Story, will speak at a special Screen NSW and AFTRS event on May 25 to draw attention to the need for more diversity and inclusion in the screen industries. Jamie is an advocate for creating positive role models for people with disability, and in February 2015, became the first person with Down syndrome to walk the catwalk at New York Fashion Week.

The event An Evening with Jamie Brewer, to be hosted at AFTRS, with a keynote address by Screen NSW CEO Courtney Gibson, is designed to encourage more discussion amongst production companies, casting agents and the wider community on how the Australian film and television industry can best move forward in creating roles, both on and off screen, for people with a disability.

Screen NSW CEO Courtney Gibson said: “It’s time all of us in the screen sector focused on creating opportunities for under-represented groups, including disabled cast and crew, in order that a multiplicity of visions and voices are seen and heard. We'll have a stronger industry with richer content if we make it a priority.”

While in Sydney Jamie will also participate in an acting workshop for filmmaking students with disabilities being run by Bus Stop Films at Sydney Community College.

According to Genevieve Clay-Smith, co-founder of Bus Stop Films, a non-profit dedicated to facilitating a film school experience for students with disability, the Australian film and television industry has a long way to go in casting characters with a disability authentically. Jamie will star in the next Bus Stop Films production titled ‘Kill Off’, a new short film being made by with students with a disability, to be filmed in Wollongong.

“Australia is behind when it comes to authentic casting, we simply don't have high expectations of actors who have disabilities, we need to start challenging that, to look for ways to cast actors with disabilities in roles where the character shares the same disability. We also need to advocate for pathways for people with disabilities to get more involved in production.

“Jamie Brewer's presence in Australia will, I hope, shed light on the abilities of people with a disability to be involved in the film industry,” said Clay-Smith.

In the first season of American Horror Story: Murder House, Jamie portrayed Adelaide "Addie" Langdon, the daughter of the main antagonist, Constance Langdon, played by Jessica Lange; in the third season, American Horror Story: Coven, Jamie portrayed Nan, an enigmatic and clairvoyant witch, and in American Horror Story: Freak Show, she played opposite Neil Patrick Harris as Chester Creb's vision of his doll, Marjorie, come to life.

An Evening with Jamie Brewer
5.30pm, Wednesday 25th May
AFTRS - Building 130, The Entertainment Quarter, Moore Park

Wednesday, 11 May 2016


Australian Disability Clearing House on Education and Training (ADCET)
In order to facilitate successful outcomes and improve the educational experience for students with disability, ADCET provides information, advice and resources to Disability Practitioners, Teachers and Students on inclusive practices within the post-secondary education sector.

First and Then - a new app
May 9, 2016
A virtual visual support app to assist people with autism and communication challenges transition calmly at home, school and the community. It replaces the traditional visual supports that can be cumbersome, time consuming, costly to create and limited in function. 
The app is easy to use, with infinite options as personalised visuals can be selected from the camera roll, camera, google images and the apps photo library.
One of our members alerted us to this new app, and has trialled it with her adolescent son with Down syndrome and hearing impairment. The link in the title takes you to an introductory video. The website and links to downloads are here.

Step by Step Cook Book - for non-readers
The Step By Step Cook Book is a colourful and clearly arranged recipe book for young children and other non-readers, such as some people with intellectual disabilities, communication or cognitive impairments or autism spectrum disorder.  
It features twelve simple, healthy, tasty and fun recipes. It has coloured photos for every piece of equipment, ingredient and step of the recipe with simply written text accompanying each step.  
This volume features 'no-cook' recipes, so there is no need for a stove, oven or microwave, meaning the recipes are perfect to use in most 

Nominations open for the National Disability Awards

2016 National Disability Awards

In 2016 we celebrate the 10th anniversary of the National Disability Awards.

The Awards are the Australian Government’s main celebration of International Day of People with Disability, aiming to honour and recognise the outstanding achievements of individuals, teams and organisations that have improved the lives of Australians with disability and contributed to increased recognition of equality and human rights for all Australians.

This year, nominations are being sought across eight categories that align to the key priority areas for action under the National Disability Strategy - employers, community partnerships, inclusive community design, technology, education and training and justice and rights protection.

Nominations close 5PM AEST, Thursday 30 June 2016.

Tuesday, 10 May 2016

Final reminders on seminars, workshop 13th, 14th and 16th May

Last few days to book for Down Syndrome NSW events in the next week:
Friday 13th May - professionals 
Saturday 14th May - families 

Monday 16th May: 10am - 12.30pm and 6.00pm - 8.30pm

Budget 2016 -2017 : further information, analysis and commentary

Federal Budget 2016 - what it means for carers
Carers Australia, 6 May 2016
Carers Australia has produced a document providing an overview of all those measures within the recent Federal Budget which may impact upon carers.

The Budget's effect on people with disabilities
2SER (radio) 4 May 2016 (audio 3m 43s)
With the handing down of last night's budget, there are concerns over the funding of NDIS and what this means for other welfare recipients. The government has made it clear that in order to afford this, funding to other areas of welfare would be cut, as well reviewing 30,000 applications to the disability pension each year. The People With Disability Australia Organisation has criticised this decision, stating that "We should not be making trade-offs and false economies between specialist disability support and income support"

The Daily spoke to the People With Disability Australia President, Craig Wallace, to discuss the implications of this budget decision further.

Monday, 9 May 2016

Carers in the Kitchen workshops and more - Carers NSW 40th anniversary

Carers NSW is celebrating its 40th anniversary this year, with a series of events across NSW, including:
As part of the Carers NSW 40th Birthday celebrations we are launching a series of Carers in the Kitchen cooking workshops with My Kitchen Rules finalists, Helena and Vikki Moursellas. 
The monthly workshops run from June – November 2016 and will take place at the William Angliss Institute, 26/32 Waterloo St, Surry Hills 2010, and are dedicated to teaching you everything you need to know about budgeting, planning and preparing scrumptious meals for your family and friends.
Attendance is free for carers who are members of Carers NSW and you can register your interest online or by contacting the Communications Team on to obtain a printed copy of the registration form. 
Expressions of interest close Friday 13th May 2016.
40 years 40 stories
Throughout 2016 we are asking carers across NSW to share their caring stories. The stories will be complied and used to raise awareness of over 850,000 unpaid family and friend carers in NSW and the work they do in supporting a loved one. 
If you have a caring story or any pictures you would like to share, please send them to or post them to PO Box 20156 World Square NSW 2002.
A calendar of events across regional NSW is online here. To find out more about events happening near you or to request promotional material for your carer support group or organisation, contact the Communications Team on 02 9280 4744 or

Joint statement on ADHC transfer

From NSW Council for Intellectual Disability (CID), Facebook post:
Together with our colleagues from Family Advocacy, NCOSS and Carers NSW, CID has today released a Joint Position Statement outlining concerns with the transfer process ... Next week we meet with ADHC representatives to discuss these recommendations and we will keep you updated on our progress.
Joint Position Statement - ADHC Transfer
NSW Council for Intellectual Disability Council, 6 May 2016
We are very concerned that the NSW Government’s process for transition out of service provision is based on ADHC choosing a person’s new service provider rather than that choice being made by people with disability with support as appropriate from their families and other advocates.

However, we are now focusing on recommendations that we can make aimed at the Government’s process including maximum input by people with disability and their families and achieving important goals such as a diverse market of service providers, meeting complex needs and maintenance of vital ADHC services that will not be continued by the National Disability Insurance Agency ... read the full statement and recommendations here, on the NSW CID website.

Friday, 6 May 2016

Weekend reading and viewing: 7 - 8 May 2016

Deaf Society president Alastair McEwin will take up the role as Disability Discrimination Commissioner at the Australian Human Rights Commission in late July, filling the vacancy left by Graeme Innes in mid-2014. He takes the reins from Susan Ryan, who has been juggling the role along with that of Age Discrimination Commissioner since the departure of Mr Innes nearly two years ago. While disability advocates have respected her work, they have wanted someone with a disability in the role as a full-time commissioner.

As well as his role at the Deaf Society, Mr McEwin is the chairman of the Disability Council of NSW. He is profoundly deaf. He said the appointment was "an incredible honour." ... more.

The Comparison Bitch
Mariah Nichols, 30 April 2016
We know we are not supposed to compare our kids. Point blank, we’re not supposed to compare them, be it compare them with their siblings or compare them with their peers, we know we aren’t supposed to go there. We’ve got that stuff about “every child being unique” coming out of our brains like steam out of a roiling kettle, but seriously. Does that change anything?

Can it even change anything, when we live in a comparison-based culture, when kids are assessed within an inch of their small brains, when we are hearing about how other mothers “do it”, when even inspiration porn has reign because “if they can do it, your excuse is invalid” ...

False Negatives: Evaluations of Functionally "Nonverbal" Children
Dana Nieder, Uncommon Sense, 30 October 2016
... Not only will believing the numbers send you down some sort of spiral-of-terrible-feelings, but believing them will change your expectations for your child. The numbers will change what you believe your child is capable of, they will plant seeds of poisonous doubt, and they will corrode your ability to presume competence. If you have a child who doesn’t speak, one of your biggest, constant jobs in life will be to advocate for their people to believe in them . . . so if you start to lower your expectations, others will follow ...

One Year On: Murmuration celebrates one year in the industry
Elle Evangelista, Dance Informa, April 2016
... I remember their launch night vividly. Held at their base, Addison Road Community Centre, there was a sense of excitement and expectation in the air as Murmuration officially launched as Sydney’s first professional integrated performance company back in April 2015. One year on, and the organisation continues going from strength to strength and exceeding many expectations originally set ...

Down Syndrome News, Volume 39, Number 1, Spring 2016
(US) National Down Syndrome Congress
In this issue ...
About my sister 
Greg Rogers, a living act of kindness  
Employee of the month, Tony Piontek 
Remembering ... Judith Ann Smith  
What I have learned from persons with Down syndrome 
A little NDSC history lesson  
Recommended reading and viewing  
NDSC at the American College of Medical Genetics and Genomics 
Self-Advocate Corner  
Esperar la perfección  

Engaging Insight: Keys to Person-Centred Thinking 
Céline Parent, Service, Support and Success: International Journal for Direct Support Professionals, Vol 5, Issue 5, May 2016
Let’s pretend for a moment that I live in a 24-hour support home. And let’s pretend that you work at that home, and you come in first thing in the morning which means that you are responsible for helping me get organized and out the door ...
  • This excellent Canadian publication is now available in French and English
  • Back issues of Service. Support and Success are freely available online
NSW Council for Intellectual Disability e-News, April 2016

My Choice Matters Newsletter, April 2016

NDIS April 2016 e-Newsletter

Latest additions to '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 
All current events listings 

‘My Art, My Way’ Forum:Practice, Promotion and Self-advocacy
Roomies Arts - Free one-day professional development forum for artists with disability, arts workers and representatives from relevant sector agencies - an opportunity for artists and arts workers to meet other practicing artists with disability, learn how to promote your work, and share ideas about how to develop as an artist. Access available as required and bookings essential.
Tuesday 24 May 2016 - Hazelhurst Gallery, Gymea

Research to Action Conference
National Disability Services and the University of Sydney Centre for Disability Research and Policy -  a one day Research to Action conference focusing on how we will work at the interface of disability support services and our health system under the NDIS. People with disability, their families and carers, researchers, support service practitioners and policy writers are encouraged to attend. Participants will hear from researchers, service providers, people with disability and their families throughout the day.
29 June 2016 - Camperdown (University of Sydney)

Thursday, 5 May 2016

Full-time Disability Discrimination Commissioner appointed today

Government Appoints Full-Time Disability Commissioner
ProBono Australia News, 5 May 2016
The federal government has appointed a full-time Disability Discrimination Commissioner – selecting former chief executive officer of People with Disability Australia Alastair McEwin for the role.

Attorney General Senator George Brandis said McEwin had been a longstanding advocate for the rights of people with disability, and had represented the interests of people with disability at all levels. McEwin is also a former manager of the Australian Centre for Disability Law ...

Comment from People with Disability Australia:
People with Disability Australia warmly welcomes the announcement today by the Attorney General of three new Commissioners for the Australian Human Rights Commission:
  • Mr Alistair McEwin as Disability Discimination Commissioner
  • the Hon Dr Kay Patterson as Age Discrimination Commissioner
  • Mr Edward Santow as Human Rights Commissioner
In particular, we warmly welcome Alistair McEwin who is well known to us at PWDA as a former CEO and strong champion of the rights of people with disability.

We look forward to working with all three new Commissioners in progressing the rights of people with disability.

Added 6 May 2016 - background on new Disability Discrimination Commissioner's experience of disability and advocacy:
Samantha Donovan, ABC News, 5 May 2016
Deaf Society president Alastair McEwin will take up the role as Disability Discrimination Commissioner at the Australian Human Rights Commission in late July, filling the vacancy left by Graeme Innes in mid-2014.

He takes the reins from Susan Ryan, who has been juggling the role along with that of Age Discrimination Commissioner since the departure of Mr Innes nearly two years ago.

While disability advocates have respected her work, they have wanted someone with a disability in the role as a full-time commissioner.

As well as his role at the Deaf Society, Mr McEwin is the chairman of the Disability Council of NSW. He is profoundly deaf.

He said the appointment was "an incredible honour." ... more.

Australian Cross Disability Alliance welcomes new Commissioners, 6 May 2016

People with Down syndrome

Townsville's 'Master Shredder' shows how work can change the life of people with disabilities
Kathleen Calderwood, ABC North Qld, 28 April 2016
At 21 years old Emma Lynam is kicking goals — she has her own flat, her own small business, and recently hired her first employee.

Bringing a little Bolivia to Dunedin
David Loughrey, Otago Daily Times 13 April 2016
A Dunedin man has brought his Bolivian heritage and photographic skills back to the city after visiting the birthplace of his parents. Carlos Biggemann yesterday officially opened his exhibition ‘‘Carnaval de Oruro'' ...  with striking images from the festival in the city of Oruro ...

Meet Pablo Pineda: 10 Things To Know About First Person With Down Syndrome To Graduate College
Janel Saldana, Latin Times, 24 March 2016
Pablo Pineda has made of his life an on-going learning experience. Pineda, now 41 years old, was the first person with Down syndrome to ever graduate from college and he didn’t stop there. The unstoppable Spaniard can also be called a writer, teacher, actor, TV host, and conference speaker ...
Eric Barton, Mirabels Magazine, April 2016
... It's three hours before dinner service at the much-acclaimed Fort Lauderdale restaurant Valentino Cucina Italiana, and things are hectic. There's a chef braising osso buco while another trims pork loins. On the front counter, sous chef Dean Bergman shreds cheese. It's not easy work. He's working on 5 pounds of Parmesan, and using a microplane no bigger than a desk ruler. He's smiling, though, the way someone smiles after landing a good job. Or maybe more like the job ...

"Love" - excerpt from Heartbreak and Beauty
Bus Stop Films, 15 April 2016
Our last excerpt, from our award-winning film, Heartbreak and Beauty, is love! Within the segment, Gerard O’Dwyer breathes life into the timeless, Shakespearean tragedy, Romeo and Juliet as he expresses the all consuming fire of romantic love. Gerard also breaks stigmas in this piece, as he eloquently recites Shakespeare while care-taking a lodge, showcasing that people with an intellectual disability are capable of a lot more than what society gives them credit for ...

Never Give Up: The Story of Collin Clarke
Men's Health, 1 May 2016