Tuesday, 31 January 2017

Down Syndrome NSW and Bus Stop Films - a little history

A little bit of Down Syndrome NSW history featured in a Sydney Morning Herald article yesterday,  in the Meet the Boss series. Bus Stop Films has grown into a strong, highly respected multi-award winning initiative under Genevieve Clay-Smith's leadership, providing arts, learning and employment opportunities for many adults with Down syndrome. We've written about  the involvement of people with Down syndrome in Bus Stop activities and achievement many times in our posts. 

We're pleased to have had a role in its development:
... answering an ad in the university newspaper set the then 19-year-old onto a far more intriguing path; one which, in 2015, led her to being awarded NSW Young Australian of the Year. 
"Down Syndrome NSW wanted a filmmaker to make a documentary. I spent two years with the six families in the film, and it changed my life," Clay-Smith says. 
When the project was finished one of the participants, a young man with Down syndrome, said that he wanted to be an actor. 
Clay-Smith got to work ...   
Sue White, Sydney Morning Herald 
30 January 2017 

School, education, teaching, learning

What a very hot, hot hot week for the start of the 2017 school year! Best wishes to all of those students starting school or high school for the very first time, and those returning from the long summer holidays.

There is so much information available to support students, teachers and families, it can be difficult to know where to start. Here are just a few links to give you food for thought right now:

I Don’t Speak for Laura
George Estreich, New York Times, 27 January 2017
... In one way, Laura’s Father’s Day note is nothing special: Lots of people with Down syndrome read and write. In another, it is evidence of a radical transformation that began in my lifetime, and is still underway ...

Schools For All Guide
School Inclusion Parent Network
We, as parents, are the experts on our children and the constant in their lives. But navigating the schools years and ensuring that our children gain access to the general education classroom, receive the appropriate supports and stay on the path to an inclusive future, can be challenging and confusing. Access to quality information can make all the difference ...
  • This guide refers to US law and school administrative procedures, but it also includes reading on the nature of inclusion in education, the role of families and other matters that have universal relevance.
Dr Robert Jackson and Catia Malaquias, IncludEd (part of the blog Starting with Julius), January 2017
The 2017 school year is about to start and teachers in regular mainstream classrooms will be busy planning and preparing teaching materials, including differentiated curricula materials for students with disability allocated to their class. To assist, we have gathered together all our “Tips for Teachers” articles on this page, including some additional information.

Tips For Teachers Series:

  • Creating An Inclusive Class Culture – Practical Tips For Teachers (N.o1)
  • Supporting Peer Connection in the Inclusive Class – Practical Tips For Teachers (No.2)
  • Less Is More: The Education Assistant – Practical Tips For Teachers (No.3)
  • Getting the “Big Idea”: Including All Students in the Same Curriculum – Practical Tips for Teachers (No. 4 Part A)
  • Making the “Big Idea” Achievable: Including All students in the Same Curriculum – Practical tips for teachers (No. 4 Part B)
  • Presenting the “Big Idea” for All: Universal Design for Learning (UDL) – Practical tips for teachers (No. 4 Part C)
  • Behaviour Support in the Inclusive Classroom: The Basics – Practical Tips for Teachers (No. 5 Part A)

Education conferences in Qld and NSW
Two education conferences scheduled for the early weeks of the school year will be of interest to schools, individual teachers and support staff - families can pass the information about them to their child's school:
Embracing Success, Down Syndrome NSW's annual education conference will be held in Sydney 23 - 24 March 2017
Endless PossibilitiesDown Syndrome Queensland's annual education conference will be held in Brisbane 2 - 3 March 2017, and might be more accessible to families and teachers in far northern NSW 

More posts on education matters

Monday, 30 January 2017

New online course from Down Syndrome Education International

Down Syndrome Education International has announced a new online course, to be presented by Professor Sue Buckley:

Implementing the Reading and Language Intervention for Children with Down Syndrome (RLI)

... This online course is designed for educators (teachers in mainstream and special education, advisory teachers and SENCOs, teaching assistants and paraprofessionals, speech and language therapists/pathologists) involved in delivering the Reading and Language Intervention for Children with Down Syndrome (RLI). Parents with an interest in the intervention and how they can support their child’s reading and language learning in partnership with their school may also benefit from the course ...

NSW cabinet reshuffled

NSW has a new Premier and cabinet, who will be sworn in today, at Government House.

Contact details for all NSW Ministers are listed on the NSW Parliament website, here.

While the needs of people with disabilities living in NSW are served by all cabinet members, these portfolios are likely to be of particular interest:
Premier - Gladys Berejiklian 
Minister for Health, and Minister for Medical Research - Brad Hazzard 
Minister for Education - Rob Stokes 
Minister for Family and Community Services, Minister for Social Housing, and Minister for the Prevention of Domestic Violence and Sexual Assault - Pru Goward 
Minister for Multiculturalism, and Minister for Disability Services - Raymond Craig Williams
Minister for Mental Health, Minister for Women, and Minister for Ageing - Tanya Davies 
Minister for Early Childhood Education, Minister for Aboriginal Affairs, and Assistant Minister for Education - Sarah Mitchell

Friday, 27 January 2017

Weekend reading: 28 - 29 January 2017

... Some new friends from her kindergarten class joined us this year as well as friends we’ve known since she was tiny, and watching her take her place in her little village made me so happy. This year, she’s bloomed socially in a remarkable way, and where she used to quietly hide behind us or shy away from interacting with larger groups, she’s now owning her space, comfortable and confident to shine her little light on her own. It’s my greatest wish for her – always own your space, girl; shine your light. You got this ...
Kelle Hampton, Enjoying the Small Things
23 January 2017

When my daughter Sophie was diagnosed with Down syndrome at four days old, the last thing I wanted to do was read a book about it. I couldn’t look at so much as a pamphlet. It was an odd response for a journalist — but for a long time I couldn’t bear to do much more than hold my baby and watch bad TV and cry and, eventually, let her teach me herself about Down syndrome. 
That said, there was a lot more to learn, so it’s a good thing my husband is also a journalist, and had a different response. He was in the hospital library from Day One ...
Amy Silverman, Friendship Circle
18 January 2017

Cátia Malaquias is a lawyer, disability advocate and the founder and director of Starting With Julius, a Western Australian based project promoting the inclusion of people with disability in media, advertising and beyond ...
Wendy Williams, Probono Australia News
23 January 2017

Through this paper, NSW Council of Intellectual Disability Chairperson, Michael Sullivan identifies language as a key area on which we need to concentrate where action and thoughts are reflected. Language can shape, although we can be much more precise about language ...
Michael Sullivan, NSW Council for Intellectual Disability
24 January 2017

In my mind I'm going after ableist and disphobic assumptions about people with disabilities. In my mind I'm educating people about who people with disabilities are and the lives we lead.
But that's not what I'm doing is it? Every defence that I use, buys into their measuring stick about what it is to be a person of value ...
Dave Hingsburger, Of Battered Aspect
19 January 2017

Arts news and commentary

Emily Crockford's Sydney Opera House
by Night
is in the gallery, and is for sale.

3DN Art Gallery featuring Artists with an Intellectual Disability Launched
15 September 2016
We are proud to announce the launch of the 3DN Art Gallery. Professor Julian Trollor revealed the online gallery at the NSW CID annual conference in Sydney on Thursday 15 September 2016. The gallery presents the works of artists with an intellectual disability whose pieces are featured in 3DN’s resources ...
  • 3DN art gallery
  • 3DN is the Department of Developmental Disability Neuropsychiatry at the University of NSW

Radical Beauty Project (UK)
Launched September 2016
Radical Beauty is about challenging opinions and understandings of beauty in contemporary culture. It is a fashion and art photography project blurring boundaries between disciplines, and working to provide an alternative vision for beauty today. 
Engaging with 40 + renowned fashion and art photographers globally, this project features only models with Down's syndrome. These models are stylised as objects of desire, beauty and worth, and all shoots are undertaken with the same dedication, talent and creativity as major fashion campaigns.

Accessible Events - Riverside Theatres Parramatta
All events at Riverside Theatres have a standard level of access. The events listed on this page have specific access points eg AUSLAN interpretation, Audio Description, Tactile Tours, Open Captions, and/or Relaxed Performances.
  • Beyond the Square Workshops - Riverside Theatre’s Beyond the Square drama program offers participants creative outlets, personal and social exploration, and skills development.
Jessica Anderson, Baltimore Sun, 14 January 2017
After Ethan Saylor's death in 2013, many families in the Down syndrome community say they tended to avoid movie theaters, but a film festival opening in Annapolis this weekend aims to change that.
... "A lot of us have avoided the movies because of [Saylor's death]. This gives us a chance to take back our joy," said Stephanie Holland, organizer of the Ethan Saylor Memorial Film Festival, which features works created by or about those with Down syndrome ...

Michael Ranic, Univerity Affairs, 5 December 2016
Ryerson’s Eliza Chandler looks for what culture can do for disability that legislation can’t ... Dr. Chandler’s teaching practice and research as an assistant professor at Ryerson University’s school of disability studies is more interested in the ways cultural production furthers disability rights. “We need access to art galleries, and art studios, access to being understood as desirable, sexual – all of these things that can’t be protected by a human rights framework,” she says ...

Thursday, 26 January 2017

Australia Day award

Congratulations, Robert Strike, on your award, and on your leadership.

Robert Strike appointed as a Member of the Order of Australia for disability advocacy
Heath Parkes-Upton, Parramatta Sun, 26 January 2017
Born with multiple physical and intellectual disabilities, Robert Strike was told as a child that he would never lead a full life. 
The Merrylands man has always loved to prove people wrong. 
On Australia Day, the 59-year-old was appointed a Member of the General Division of the Order of Australia, reward for a lifetime of advocacy for people with a disability ...

Down Syndrome NSW education conference 2017


     23 and 24 MARCH 2017


Keynote speakers:
Dr Rhonda Faragher - senior lecturer in mathematics education, Australian Catholic University. Brisbane 
Dr Kelly Burgoyne - formerly at Down Syndrome Education International, currently Senior Research Fellow, Psychology, Australian Catholic University. Brisbane
Other speakers: 
Leading professionals from within the Department of Education and Training and the Catholic Education Office.
An essential two day conference for anyone working with a student with Down syndrome and suitable for educators working in all education sectors. Parents and carers are also welcome.

Wednesday, 25 January 2017

Intellectual disability / mental health e-learning

Intellectual Disability Mental Health e-Learning provides free eLearning about intellectual disability to professionals, carers, and consumers. Our goal is to improve your knowledge, skills and confidence, leading to better mental health and wellbeing for people with an intellectual disability. 
The program is an initiative of the Department of Developmental Disability Neuropsychiatry (3DN) at the University of NSW.

New e-Learning module on intellectual disability mental health now available
3DN, 12 January 2017
The new module aims to enhance the working relationship between disability professionals and other professionals involved in a person’s supports. It covers topics such as ‘what is interagency working?’, ‘how do different agencies work together?’ and ‘how can professionals work together to enhance mental health support?’ 
The module is freely available now at www.idhealtheducation.edu.au
New e-Learning modules for carers are in development
Currently, 3DN staff are designing online modules for carers of someone with an intellectual disability and mental illness. They would like your input:

Contact Thea Kremser at 3DN on 02 9385 2580  or
email t.kremser@unsw.edu.au
for further information

Tuesday, 24 January 2017

Free webinar series: Stepping Stones Triple P

Are you a parent / carer of a child with Down syndrome? 

As part of the Stepping Stones Triple P Project, Down Syndrome NSW invites all parents of children with Down syndrome aged 2 to 12 to attend the following FREE parenting webinar series

Seminar 1: Positive Parenting for Children With a Disability 
Positive parenting is an effective approach to raising children that emphasises the positive. It involves creating a family environment that is loving, supportive and predictable. This is important in raising healthy, well-adjusted children who will reach their potential and have rewarding relationships with others. Positive parenting reduces the stress of parenting and makes it more enriching and enjoyable.
Wednesday 8th of March 2017, 12pm - 1.30pm
Seminar 2: Helping Your Child Reach Their Potential 
All children need to develop skills to help them become independent, to get on with others and to reach their potential. While children can pick up some skills simply by watching others, children with disabilities often need a more structured approach. This seminar focuses on how to teach children important new skills and behaviours by following six key steps.
Wednesday 15th of March 2017, 12pm - 1.30pm

Seminar 3: Changing Problem Behaviour into Positive Behaviour 
Children with disabilities are more at risk than others of developing problem behaviours. These behaviours can interfere with their growth and development and can be disruptive for the family as a whole. This seminar provides ideas on understanding why a particular behaviour is occurring and practical suggestions for how to promote alternative behaviour.
Wednesday 22nd of March 2017, 12pm - 1.30pm
Seminars will be delivered online, via Webinar so that they can be viewed by parents and carers across Australia.

More information and instructions for how to access the Webinar will be provided once you register for the seminars.

RSVP by 7th March 2017: As these programs are being funded as part of a research project please contact the research team to register your interest:
Phone: 02 9114 4060
Email: fhs.Steppingstones@sydney.edu.au

Monday, 23 January 2017

Book review, summary of 2016 publications

Supporting Positive Behavior in Children and Teens with Down Syndrome, David Stein, Woodbine House, 2016

Reviewed by Disabi(LIT)y, 4 January, 2017

... 'Supporting Positive Behavior in Children and Teens with Down Syndrome' has managed to allay some of the feelings of isolation, and it’s helped me to understand where Finn’s negative behaviors come from, and how to effectively minimize them ...

Other books specifically about people with Down syndrome, published in 2016:
The Parent's Guide to Down Syndrome: Advice, Information, Inspiration, and Support for Raising Your Child from Diagnosis through AdulthoodJennifer Jacob and Mardra Sikora, Adams Media, 2016
Sing Fox To Me, Sarah Kanake, Affirm Press, 2016
Entwined : Sisters and Secrets in the Silent World of Artist Judith Scott, Joyce Wallace Scott, Beacon Press, 2016
Prince Noah and the School Pirates, Silke Schnee, Illustrated by Heike Sistig, 2016
Fine Motor Skills for Children with Down Syndrome: A Guide for Parents and Professionals, Third Edition, Maryanne Bruni, Woodbine House, 2016


Why The Publishing Industry Can’t Get Disability Right
By Alaina Leary, The Establishment, 17 November 2016
... there aren’t enough portrayals of disability in the stories we publish, the stories we read. We have one or two “typical” stories, usually steeped in pity, and people aren’t being exposed to anything else.

And it’s affecting all of us. It affected the way many of my abled classmates perceived my protagonist that afternoon, and it affected the way I, as a disabled writer, felt about including these stories in my work, and having the diversity of the disability experience validated ...

Catia Malaquias, Speech at National Disability Services WA, for International Day of People With Disability, 2 December 2016
... as a non-disabled person invited on this stage, I would like to acknowledge people with disability for allowing me to speak to their context and on this day ... 

... to really understand the mission of Starting with Julius, we need to look back longer, to a time long before Julius. A time when attitudes to people like my son, were largely driven by fear, ignorance and even superstition. When people with disability were routinely kept apart from the rest of society and denied the most fundamental human rights – including rights to family, education, work and community ...

Friday, 20 January 2017

Weekend reading and viewing : 21 - 22 January 2017

The Adult Down Syndrome Center, located in suburban Chicago, is a primary health care service specifically serving the needs of adults (and now teens) with Down syndrome. This week it celebrates its 25th anniversary. During that time its reach has been far beyond a local health care facility - valuable as that is. 

The experience and insight of the staff, patients and families has provided much information to people with Down syndrome and those who care for them across the world, through teaching, books and other publications, presentations at local and international conferences, research and social media. The benefit of the knowledge built up from caring for 6000+ people with Down syndrome has benefitted many thousands more. We congratulate all of those who created and have grown the ADSC, along with our very grateful thanks for your work and generosity in sharing it so readily for 25 years.

Dr Brian Chicoine, physician and co-director of the Center, has been there since the very first day, and has looked back over the Center's history this week
Blog: What I have learned from persons with Down syndromeDr. Brian Chicoine, Adult Down Syndrome Center, 17 January 2017
... A few years before the Center opened, Robert Fulghum wrote “All I Really Need to Know I Learned in Kindergarten.” I have often thought that I should write a companion book, “All I Need to Know Can Be Learned from People with Down Syndrome.” In it, I would describe some of the many lessons that I have learned ...
Down Syndrome and the Stories We Tell
David M. Perry, Pacific Standard, 13 January 2017
My non-verbal son’s reactions to stories and films tell me he’s ‘competent’ in ways he can’t yet express — and I can’t yet fully understand ...
... We try always to “presume competence.” This phrase, popular in the intellectual and developmental disability community, commands us to engage with disabled individuals under the presumption that they understand, that they are communicating in ways that work for them, that they are competent people. It’s definitely one of my watchwords in terms of my goals as a parent, but it’s often hard to achieve in practice. Sometimes, I really do want to know what he’s thinking ...

Festival features films about, created by individuals with Down syndrome
Jessica Anderson, Baltimore Sun, 15 January 2016
After Ethan Saylor's death in 2013, many families in the Down syndrome community say they tended to avoid movie theaters, but a film festival opening in Annapolis this weekend aims to change that ...

... Holland said she hopes the event will draw others from outside the community and show how capable those with Down syndrome are when given the chance.

"It was born out of tragedy, but it's really a story about how change can happen," she said ...

My Mom or My Battles
Dave Hingsburger, Of Battered Aspect, 13 January 2017
People thought him funny. And because they thought him funny, they laughed at him. All he had tried to do was to be assertive and stand his ground. In fact, he had done that, but in doing so he made himself ridiculous in the eyes of pretty much everyone around ... I worry more and more and more about the theft of the voices of people with intellectual disabilities by those who, while they have good motives, take what's not theirs ...

Thursday, 19 January 2017

Rights, discrimination

Feeling Streepy
Susan Fleming, All Born In, 16 January 2017
... but we do need some new stories. Some main characters. With plots that don’t fit a tiny cliched mold. People with disabilities are complex, dynamic people living complex, dynamic lives ...

Be brave and speak up for your rights
Leigh Creighton, Newcastle Herald, 13 January 2017
Human rights violations happen only in far away, mostly war-torn countries right?

Wrong. In Australia, our lucky, war-free country, virtually every person with a disability experiences rights violations at some point in their life. For many, these violations occur not just once, but daily ...

Facebook video reminder of violence faced by disabled Americans
David Perry, CNN, 5 January 2017
... The racist comments are inflammatory. People -- via both formal and social media -- have expressed outrage. But while the nature of the remarks on the video have unsurprisingly sparked much discussion about race, Trump and the live streaming of crimes, something important risks being overlooked: the chilling, everyday, truth that to be disabled in America is to be at greater risk of violence ...

How Is The World Treating People With Disabilities?
Susan Brink, NPR, 18 December 2016
In the ten years since the United Nations adopted the Convention on the Rights of Persons with Disabilities, ratified by 168 countries, there has been both progress and stubborn obstacles ...

Christine Linden, ANZ Blue Notes, 2 December 2016
Almost 20 per cent of Australians, around four million people, live with a disability. However, the employment of people with disability in Australia lags well behind other OECD countries –ranking 21st out of 29 OECD in this area. Australia also has a poor track record of recognising human rights for people with disability, ranking last (27th of 27) in OECD countries for people with a disability living in or near poverty.

These statistics alone should provide a powerful trigger to attitude-change towards people with disability ...

Voice subscription and selected articles online

Voice is the journal of Down Syndrome Australia, published in May, August and December. Subscription to the print edition of the national journal is included in the membership fees of state and territory associations. 

Subscriptions and access to selected articles are now available more widely.

You can now take advantage of a new feature and subscribe online. The target readership is member families of state and territory associations but the publication is expected to also be of interest to practitioners and professionals whose work brings them into contact with individuals with Down syndrome.

Selected articles online
After each publication is released, some favourite articles will now be featured on the DSA website, giving you access to them wherever you are, and making it easier to share those articles with others.

For example, from the July 2016 issue of Voice, one of the articles released online is Rachel Kroes's (Executive Officer, Down Syndrome Association NT), Sharing the journey - travelling outback:
... The key to development of services and growth in understanding about Down syndrome in Aboriginal culture is to visit often, as communities are well aware of the many services that appear and then disappear. One needs to be consistent, seek out the same people, follow a similar routine each visit and be open to the total unpredictability of remote life. Then, quietly, respect and trust solidifies. Hearts and conversation open and we hear such similar concerns and fears as confided to us by our families in urban Darwin. The geography is immaterial – these mums and dads express their love and concern for their children in ways similar yet unimaginable to city dwellers ...

Wednesday, 18 January 2017

NSW Sports Awards: Christopher Bunton, finalist

Congratulations to Christopher Bunton, who has been named as a finalist in the 2016 NSW Sports Awards, in the Athlete of the Year with a Disability category.

In 2016 Chris represented Australia t the Trisome Games in Italy, winning five gymnastics medals.

Chris has honed his skills in gymnastics and as a gymnastics teacher over many years of dedicated training and competition. The cover of the DS NSW Summer 2007 - 2008 Newsletter, featured Tony Stinson's photo of Chris Bunton, taken during competition at the World Special Olympic Games in Shanghai in 2007, as an already accomplished fifteen year old.

The awards will be announced at a gala dinner in Sydney on Thursday, 23 February 2017.
Now in its 22nd year, the prestigious NSW Sports Awards celebrate the finest achievements by NSW athletes, teams, coaches, administrators and organisations in 2016. 
An all-embracing event, the NSW Sports Awards acknowledge the breadth of sporting activity and achievement across the state each year with categories for able-bodied and disabled athletes, young athletes and masters athletes. Awards are also presented for the best event of the year, official of the year and the all important distinguished long service awards for those that have given exceptional long-time service to their sport ... Sport NSW

Tuesday, 17 January 2017

Research #1 for 2017

Gene Targets for in Utero Therapy in Down Syndrome: Potentials and Pitfalls
Jennifer Shinae Jennings and Ahmad Salehi, News-Medical, 13 january 2016
... new non-invasive prenatal testing methods ... offer an unprecedented opportunity for early treatment of brain abnormalities in DS. Currently, no therapy is available for cognitive dysfunction in DS and a recent clinical trial targeting a specific brain system in DS has not been very promising ...
Do children with Down syndrome need modified chemo for leukemia? No, says study
Vector (Boston Children's Hospital), 11 January 2016
Clinicians have long known that children with Down syndrome carry an elevated risk of developing acute lymphoblastic leukemia (ALL), the most common pediatric cancer. Research consistently shows that children with Down syndrome are more likely to suffer complications from chemotherapy. At the same time, some studies have suggested that children with Down syndrome and ALL may have a higher chance of relapsing.

What to do with this knowledge has been a source of controversy. Should patients with ALL and Down syndrome receive treatment modified to minimize toxicity from chemotherapy? Or should they be given the same treatment as other children with ALL to minimize the chance for relapse?

Research to Action Fact Sheets
NSWCID eNews, December 2016
The Centre for Applied Disability Research is making evidence about disability accessible with their research to action guides.
Current Guides:
Medical care of a child with Down syndrome probably not a financial burden for most families
Massachusetts General Hospital, 14 December 2016
The first study to analyze the out-of-pocket costs to families for the medical care of children and adolescents with Down syndrome finds that monthly costs – averaged over the first 18 years of life – are less than $100 a month more than the costs for care of a typically developing child. The report published in American Journal of Medical Genetics, Part A also finds that the additional costs are lower when the child is older ...

New Study Identifies Which Physical Features Are Best Indicators of Down Syndrome in Diverse Populations
(US) Children's National Health System, 19 December 2016
Physical features vary in patients with Down syndrome across diverse populations, according to a large international study published in the January 2017 issue of the American Journal of Medical Genetics. The study, led by the National Human Genome Research Institute (NHGRI), part of the National Institutes of Health, used an objective digital facial analysis technology developed by the Sheikh Zayed Institute for Pediatric Surgical Innovation at Children’s National Health System to identify the most relevant facial features characteristic in Down syndrome in diverse populations from 12 countries. This NHGRI study is the first to compare and contrast Down syndrome across diverse populations ...
Pain and Cognitive Functioning in Adults with Down Syndrome
Nanda C. de Knegt et al, Pain Medicine, 29 Deceber 2016 (advance publication)
The aim of the present study was to examine whether cognitive functioning (i.e., memory and executive functioning) is related to self-reported presence of pain ...

Conclusions. Memory seems to be related to the self-reported presence of pain in adults with DS after explicit inquiry, although the clinical use of this model is yet limited. Therefore, further research is needed for insight into the role of cognitive processes in self-report ... to evaluate whether neuropsychological examination could contribute to pain assessment in DS.
  • The abstract is available to read online without charge. The full text of the original study report is available for purchase online.

Employment opportunity at Down Syndrome NSW: Bookeeper and Data Base Manager

We are currently looking for a self-motivated, practical and skilled individual to be the bookkeeper for Down Syndrome NSW.

Permanent Part time, 30 hours per week, Monday to Thursday

Located at 410 Church Street, North Parramatta
Down Syndrome NSW (DS NSW) champions the right of people with Down syndrome to have the same access to society as everyone else. This means the right to health, education, work, family and being part of the community. 
We achieve this by supporting people with Down syndrome, their families and carers to be part of a strong and vibrant community that is informed, engaged and active.
DS NSW is an independent, not-for-profit organisation that was established in 1980 by parents of children with Down syndrome.
The Role
The role will involve day to day bookkeeping functions, including use of our accounting system Xero as well as data processing in relation to online payments, registrations, merchandise and services purchases. General data maintenance will form the other part of the role via our client management system Raisers Edge.

Monday, 16 January 2017

News and commentary on the NDIS (61)

Miki Perkins, The Age, 14 January 2017
There was a spa bath in the cabin, the beach close by and a glass of bubbles in hand (soft drink only of course). Their days were filled with sun, ice cream and conversation; the exquisite, ordinary pleasures of a weekend away ...

Concern about NDIS in remote areas as fewer than half of NT participants receive support payments
Jacqueline Breen, ABC News, 30 December 2016
Fewer than half of Northern Territorians eligible for funded support under the National Disability Insurance Scheme have had payments made against their plan, prompting renewed questions about the scheme's workings in remote areas ...
Naomi Woodley, ABC News, 24 December 2016
The inaugural chair of the agency running the National Disability Insurance Scheme has emphasised the importance of his board's independence and experience in the disability sector, as he prepares to leave the role ...

Sector Disappointed as NDIA Given Corporate Makeover
Wendy Williams, Probono News, 6 January 2016
The disability sector has expressed “disappointment” after a number of “corporate heavyweights” have been appointed to lead the National Disability Insurance Scheme in place of those with lived experience ...
Houston, we have some problems
Disability Services Consulting, 30 December 2016
... The 12 months between now and December 2017 will see the NDIS tested on just about every front as the transition to full scheme becomes real. Not only does the NDIA have to complete plans for a staggering 100,000 people with disability. But the NDIA will do this while managing through a mess of in-kind arrangements handed to them by the Commonwealth and States, an overly strict cap on their own staffing, as well as building a new program to help over one million Australians with disability or who are carers.

Despite the NDIA creating a rod for their own backs from time to time (eg. the removal of the float for self-managed participants), the NDIA deserve our patience and goodwill as they try and deliver the near impossible in 2017 ...

Myth busting and choosing to self-manage on the NDIS
Hire-Up, 8 December 2016
We often hear that finding clear, straight-forward information about choosing to self-manage on the NDIS can sometimes be tricky. This is largely because there are so many ways to self-manage on the NDIS and how a person arranges their supports depends on what they want to achieve ...
Libby Ellis, InCharge, 10 December 2016
This is the sixth post in our blog series about some of the common confusions and inconsistencies we’ve heard from people coming out of NDIS planning meetings ...

... Another confusion we’ve come across is around Plan Management and Supports Coordination. To recap on what these things are, plan management is one of the three ways you can manage your NDIS funds. With plan management, you have the flexibility to pay for both registered and unregistered providers with your NDIS funds ... Supports Coordination (or ‘Coordination of Supports’) is when someone helps you to implement your plan, to get started and find services and supports in your local community. If you receive supports co-ordination, it is a separately funded part of your Plan ... 
Linda Reynolds (Senator, WA), Huffington Post, 22 December 2016
As we prepare to spend Christmas with our family and friends, I ask all Australians to consider the plight of 6,200 younger people who will spend the holiday living in an aged-care facility rather than at home with their loved ones. A distressing situation, which need not be this way ... Research into the matter is clear - young people who live long-term in aged care facilities experience declining emotional, physical and mental health. But no one needs the research to tell us that ... Young people in nursing homes are subject to the same income and assets assessments relating to government assistance as other elderly residents. This can mean that a young person is up to $1,000 worse off per fortnight than if they were part of the NDIS ...

Ten Years of Progress (video 1m 50s)
NDIS, 1 December 2016

... Ten years ago, people with disability in Australia really only had access to a broken system.... The last ten years, what’s changed for people with disabilities is the Convention on the Rights of Persons with Disabilities was adopted and has now been ratified by 168 countries around the world. We’ve had the campaign for the NDIS, and that’s really brought disability far more to the centre of the conversation. We’re rolling out a scheme that’s based on the principle that people should get what they need, when they need it.

... So we have to change those community attitudes and I think that’s the responsibility of everyone in the community to do that ...


The official NDIS website provides access to documents, and up to date information about how the NDIS works, and NDIS events such as local workshops and webinars.

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.

Disability Loop - a way to find out more about the National Disability Insurance Scheme (NDIS). Disability Loop is a project funded by the NDIS. It is run by, and for, people with disability and their allies.

Two other closed Facebook groups (only members can see the posts) that you might find useful for answering particular queries are:
  • NDIS Grassroots Discussion - a large group run for and by people with all kinds of disabilities, and welcoming of carers - the administrators are very experienced in managing discussions that can become robust at times, as criticism of the NDIS is raised
  • the newer and smaller I Love NDIS aims to promote discussion of individual's successes in putting their plans together and implementing them.

Friday, 13 January 2017

Weekend reading and viewing: 14 - 15 January 2017

I may not be much for words - but I got much to say
A music video, posted on Facebook by Open Future Learning on 12/13 January 2017
' ... in the end we're all or none free ...'

Adam's Notepad, 5 January 2017
... We’ve heard a lot of different things from a lot of different people. While some of those things have been less than helpful, some of them have been very beneficial and encouraging. It’s not surprising that some of the most helpful comments I have heard came from the parents of children with Down syndrome. I’d like to share some of that wisdom with you ...

Am I Doing It Right?: Special Needs and Siblings
Kelle Hampton, Enjoying the Small Things, 12 January 2017
... Do all siblings protect their toys and ward off any who dare get in their space? Of course. But in Nella’s case, interactive play with siblings and engaging communication that helps deepen sibling bonds is definitely more of a challenge and one that’s become more recognizable this year, especially between her and Lainey. It requires our family’s attention and support in creatively nurturing what we know is there–loyalty and a love so deep, you can’t even describe it ...

The Baby After My Baby with Special Needs ...
Happy Soul Project, November 2015
...I'm kinda thankful for having my last baby, after a baby with special needs. It's making everything more intense but it's also making me more grateful, more aware of every passing moment and more appreciative of what we've been through and what an absolute gift every baby and every day really is ...

“Mom, when is this Down syndrome going to be over?”
Phillip C Clarke, 3 November 2016
.... Sarah looked at my mom with tears in her eyes and said, “Mom, when is this Down syndrome going to be over? I don’t like it.” We all had tears in our eyes after hearing Sarah express her frustration. I realized that I had never truly understood just how aware she was ...

'Devil Boy': Down's syndrome in Sierra Leone
Olivia Acland, Aljazeera, 2 January 2017
In a country that demonises mental disabilities, a mother recalls the journey of her community's acceptance and remorse.

"I" versus "He"
Dave Hingsburger, Of Battered Aspect, 12 January 2017
... "Thanks for showing me how to do it!" he said. He was about to speak again but before he could, the worker with him said, "Do you wear gloves to help you, I didn't see?" I was about to answer when he spoke, his voice softly frustrated, "I was going to ask you what kind of gloves you are using ..." he'd obviously noticed my glove. Her voice entered again, "He's looking for a good set of gloves to use." His face closed down as she spoke ...

Embracing Success 2017: DS NSW education conference, early bird registration now open

23 and 24 MARCH 2017  
SMC Conference and Function Centre, Goulburn Street 
 Keynote speakers:
Dr Rhonda Faragher - senior lecturer in mathematics education, Australian Catholic University. Brisbane 
Dr Kelly Burgoyne - formerly at Down Syndrome Education International, currently Senior Research Fellow, Psychology, Australian Catholic University. Brisbane
Other speakers: 
Leading professionals from within the Department of Education and Training and the Catholic Education Office.
An essential two day conference for anyone working with a student with Down syndrome and suitable for educators working in all education sectors. Parents and carers are also welcome.

Thursday, 12 January 2017

People with Down syndrome

Forklift licence an opportunity for Sri Lankan migrant with Down syndrome
Stefan Armbruster , SBS News, 27 December 2016
Nilu Palipan is breaking new ground learning to drive a forklift in Brisbane, and she is looking forward to a brighter future in Australia. She has just completed her provisional driver’s licence, quite an achievement for the 22-year-old who has Down syndrome ...

Paul Daugherty, 9 December 2016
We make strides in small increments. Improving the lives and futures of our kids with disabilities is like walking the Appalachian Trail. Every day is a chance to take another step. We took a few recently.

Jillian got a second job, as a teacher’s assistant in the school system she attended. In addition to her duties in the athletic department at Northern Kentucky University, Jillian now works with 1st- and 2nd-grade students in the classroom. She reads to them, helps them with math and whatever else the teacher needs ...

Families work to provide opportunities for those with special needs
Tom Strong, The Beacon News, 20 December 2016
It would seem that Philip Weir is one of the busiest young men in town. At the age of 23, he holds down three part-time jobs in the Oswego area. And in his spare time, he serves as an usher at St. Anne Church and helps provide community service as a member of the Oswego Optimist Club ...

Jack Barlow: Breaking boundaries as first Cincinnati ballet dancer with Down syndromeCincinnati Ballet, 16 December 2016
After four years in Ballet Moves, a dance program for children with Down Syndrome and Cerebral palsy created by Cincinnati Ballet and Cincinnati Children’s Hospital, Jack has grown to love dance. His enthusiasm and hard work earned him a role on stage with Cincinnati Ballet during The Nutcracker, making Jack the first dancer with down syndrome to dance with the company ...

Watertown teen with Down syndrome turns love of dogs into robust family business
Molly Beck, Wisconsin State Journal, 26 December 2016
... It’s already dark on this Tuesday in late November — just before supper time — and the store is buzzing with the slamming of shopping carts and the beeping of checkout counters.

Gracie stops with her mom and dad at the store’s front counter to collect their payout — $260 in cash this week — and then the three haul a cardboard box to the store’s pet supplies aisle to stock five shelves that the store reserves for Gracie’s Doggie Delights, her family’s new business ...

Franke James, 5 December 2016
How does a Canadian with an intellectual disability fight back when their rights are violated? Four recent developments have me thinking optimistically about signs of change for Canadians with intellectual disabilities, and my sister in particular…

Wednesday, 11 January 2017

Book reviews

Book review - 'The Shouted Goodbye' by Jeremy Ward
Jim Simpon, NSW CID,
Jeremy Ward's personal memoir of raising a child with a disability, The Shouted Goodbye is the story of his daughter, Mena, who grabbed all of life’s opportunities, and his and his wife's determination that she have a full and inclusive life.

This is a must-read book for anyone who believes in a fully inclusive world for people with disabilities. It should also be compulsory reading for the many teachers, disability workers, bureaucrats and politicians who need to better understand and embrace this vision ...
Amy Silverman, Woodbine House, 2016
Review by Dotty Robison, Federation for Children with Special Needs, Summer 2016
This book is heartfelt and almost gritty in its honesty. Amy Silverman, journalist and parent of a daughter with Down syndrome, bares her soul in her personal reflections on topics from the moments after her daughter Sophie was born, to thinking back to the weeks before her birth when she knew Sophie might have Down syndrome ...

News and commentary on education

Catia Malaquias, Starting with Julius: IncludedEd, 18 December 2016
...  A long list of adverse results in comparison to the “average” learner without much more goes a long way to telling a parent and the student themselves that they do not belong in that learning environment ...

Thoman Hehir, Silvana and Christopher Pascucci and Abt Associates, for Instituto Alana, August 2016
... In this report we sought to identify research that demonstrates the benefits of inclusive education not only for students with disabilities, but especially for students without disabilities, since evidence of benefits for the former is already widely known. This report is the result of a systematic review of 280 studies from 25 countries. Eighty-nine of the studies provide relevant scientific evidence and were synthesized and summarized below. 

There is clear and consistent evidence that inclusive educational settings can confer substantial short- and long-term benefits for students with and without disabilities ...

How schools avoid enrolling children with disabilities
Linda J Graham, Helen Proctor, Roselyn Dixon, The Conversation, 28 January 28, 2016
Children with disabilities are frequently discriminated against in Australian schools. It has been an ongoing issue for years, with reports showing that little has improved since 2002.

Exclusion practices – dubbed “gatekeeping” – include: advising parents to send their child to another school that could better support them; allowing a child to attend a school only on the days that funding is available; and asking parents to pay more so the school can employ support staff or purchase equipment. Although this happens across all school types, it tends to be more prominent in, and easier for, non-government or private schools.

Matthew Knott, Sydney Morning Herald. 20 December 2016
Students with disabilities could miss out on hundreds of millions of dollars in extra funding because of serious concerns about the reliability of a landmark national audit into the number of school children with special needs ...
‘Naughty’ classes are wrong: here’s what the research says
Linda Graham, Australian Association for Research in Education, 31 October 2016
A primary school in Victoria made the news recently when it created a separate “naughty-naughty” class for children experiencing learning and behavioural difficulties. It is not the first school to have done this and it is unlikely to be the last ...

Finding support when you least expect it
Inclusive Education Canada, 8 November 2016
In October 2016, Gordon Porter, Director at Inclusive Education Canada, and Debbie met for the first time while Gordon was promoting inclusive education at a series of speaking events in Northern Ontario. Debbie told Gordon he had a significant impact on the course of her life despite having never met in person ...

Tuesday, 10 January 2017

Photographers: My Perspective 2017 entries are open

Entries are now open for the annual UK competition for photographers with Down syndrome, My Perspective, and close on 28 April 2017. The competition is hosted by the Down's Syndrome Association in London and is open to international entries.

These articles are about two previous My Perspective award winners:

Family Advocacy event update

Full details and fliers are now available for this Family Advocacy event for families early next month, and registration is open:

Wednesday 8 February 2017 - Rosehill (Parramatta)
Family Advocacy - Professor of Inclusive Education, Mara Sapon-Shevin presents a workshop on positive social inclusion in the regular class for students with disability.
This workshop is for families of children with disability only. The overall focus of this workshop is on inclusion for students with disability in school and will be relevant for all families with school aged children. However, be aware the strategies shared focus mainly on primary school settings.

Monday, 9 January 2017


Catia Malaquias, Starting with Julius, 30 December 2016
Corporations have generally taken narrow and compliance-driven approaches to disability. Disability, when expressly recognised by a corporation’s policies, is often noted but not addressed for implementation or data collection. Diversity policies for example often do not even mention disability as a form of diversity, and very rarely provide for targets, monitoring or data collection in the same way as they do for say gender diversity ...
Charlotte McClain-Nhlapo, World Bank, 6 December 2016
... While urbanization brings people closer to new economic and sociocultural opportunities, persons with disabilities still face a range of constraints in many cities, such as inaccessible buildings and public spaces, limited transportation options, inaccessible housing, and barriers in using technology-enabled virtual environments. These urban constraints have a significant impact on those living with disabilities in terms of mobility, ability to engage in education and skills development, employability and income generation, and larger social and political participation ...

It’s Time to Include Disabilities in Diversity
Janice Linz, Huffington Post (blog), 15 December 2016
Article after article discusses our need to ensure diversity, but they rarely mention disabilities. It’s as if people with disabilities are an afterthought (or more accurately, a forgotten thought). If the omission is mentioned, people often get defensive, as if they are being accused of insensitivity. But if another protected class like gender, race, religion, or sexual orientation were omitted, people would be up in arms about that ...

It takes a village to raise a child who helps others
Luisa D'Amato, Waterloo Region Record, 17 December 2016
Dylan Duncan was physically abused as a child. He was taken from his family, and grew up in a foster home. At 19, he lives with developmental disabilities.

What picture are you seeing, now that you have these facts? Someone who will need help all his life? Or someone who freely gives it?

Why Australia needs its first ambassador for disability inclusive development
Erin Ryan, Sight, 15 December 2016
People with disability were invisible in the world portrayed by the Millennium Development Goals. But this doesn’t reflect the world we live in; globally, one in seven people has a disability. In developing countries, this figure is even higher, at one in five. This erasure prevented people with disability from benefitting equally from efforts to reach the MDG targets ...

National Disability Strategy 2010-2020 to build inclusive and accessible communities: submissions invited

The Senate Community Affairs References Committee is currently conducting an inquiry into
The delivery of outcomes under the National Disability Strategy 2010-2020 to build inclusive and accessible communities

(one of six priorities identified in the strategy)

The terms of reference are:
  • the planning, design, management, and regulation of:
  • the built and natural environment, including commercial premises, housing, public spaces and amenities,
  • transport services and infrastructure, and
  • communication and information systems, including Australian electronic media and the emerging Internet of things;
  • potential barriers to progress or innovation and how these might be addressed;
  • the impact of restricted access for people with disability on inclusion and participation in economic, cultural, social, civil and political life; and
  • any other related matters.

Submissions should be received by 17 March 2017. The reporting date is 13 September 2017.