Address details

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

Monday, 1 April 2019

Portait of the Artist's Mother

Portrait of the Artist's Mother | Dignity, Creativity and Disability by Fiona Place will be published by Spinifex Press in May 2019. This will be such an important book for everyone in our community. Put simply, Fiona writes glorious prose. That she has turned her attention to a long form reflection on parenting, creativity and disability is a cause to celebrate. It is for us, as readers, to recognise the experiences Fiona articulates because we share them. Here in the DSNSW Library we are almost beside ourselves with excitement!

Long standing members of our community will remember that Fiona edited Voice magazine for a number of years as well as having been a member of staff here at Down Syndrome NSW. 

The book will be officially launched on Friday 3 May 2019 in Glebe. 

I am seen by many as a danger. As having failed to understand the new rules, the new paradigm of successful motherhood. 
A memoir and an examination of the politics of disability. Fiona Place describes the pressure from medical institutions to undergo screening during pregnancy and the traumatic nature and assumptions that a child with Trisomy 21 should not live, even though people with Down syndrome do live rich and productive lives. Fiona's son, Fraser, has become an artist and his prize-winning paintings have been exhibited in galleries in Sydney and Canberra. How does a mother get from the grieving silence of the birthing room through the horrified comments of other mothers to the applause at gallery openings? 

This is a story of courage, love and commitment to the idea that all people, including those who are 'less than perfect', have a right to be welcomed into this increasingly imperfect world. Publisher Note

Thursday, 28 March 2019


Diversity of Disability Image Competition

This one is for all the photographic creatives out there. The Melbourne Disability Institute, Melbourne University, is looking for photographic images to be used on their electronic media and print collateral.

Prize Money: Total prize pool of $5,000. Winning submission/s for leading images will receive $1,000. Winning images for supporting images will receive $500.
Applications close Friday 3 May. The winning entries will be chosen by a panel  who will be looking for images that depict the diversity of disability, reflect originality and visual appeal.

Call Out for Photo Shoot

This one is for anyone out there who would like a little modelling experience!
Family Planning NSW is holding a photo shoot for their new brochures.

They are looking for people with disability age of 18 - 30 years. 
The photos will show people visiting a doctor's clinic and reading booklets. 
The brochures will help people with disability decide if they want to visit a Family Planning NSW clinic.
Photo shoot will take place at Family Planning NSW in Ashfield.
If you are interested, contact Erin on 8752 4312 or E:

Thursday, 21 March 2019

World Down Syndrome Day

Leave no one behind 

Leave no one behind is the international theme for World Down Syndrome Day this year.
'All people with Down syndrome must have opportunities to live fulfilling lives, included on a full and equal basis with others, in all aspects of society. 
The 2030 UN Agenda for Sustainable Development, a global plan of action for people, planet and prosperity, pledges that “no one will be left behind”.'

Watch the video 

What Makes Me Proud?
Down Syndrome Australia has published 21 stories over the last three weeks, reflecting on the proposition "What makes me proud?". All 21 stories available on DS Australia website for those of you who are wanting to binge view to celebrate the day!

Down Syndrome Australia patron the Governor-General Sir Peter Cosgrove will be hosting an event in Canberra to celebrate

Down Syndrome NSW will be celebrating on Sunday with our Afternoon Tea with guest speaker Dr Ellen Skladzien from Down Syndrome Australia.

Plenty of schools across NSW have engaged with "Lots of Socks" this year too

Read an employment success story from Canberra
Kathryn and Peter are kicking goals on World Down Syndrome Day
by Megan Doherty
in The Canberra Times

"Kathryn Rodwell and Peter Bartholomew have been working for the last 18 months on the Ginninderry project, job-sharing at the head office, helping in all kinds of ways to support the creation of a massive housing development in the north-west of Canberra."

Wednesday, 20 March 2019

Library Shelf

The Essential Guide to Safe travel-training for Children with Autism and Intellectual Disabilities
by Desiree Gallimore
Published by Jessica Kingsley Publishers

Travel-training, as a topic, can often bring on a weary sigh amongst parents and is not usually high on everyone's reading list. This one, though, is a travel-training book with a difference. Whether you are looking into travel-training for the first time or need to reignite some enthusiasm for the project, this is the book for you. It provides a clear outline of what a good travel training program (as distinct from assisted travel) should, and can, be like.

"For those growing up with an intellectual disability or autism, comfortable, safe and independent travel will prove an invaluable life skill. The key to pursuing fulfilling work and leisure activities and developing as an individual, it also brings a liberating level of self-sufficiency and reassurance of equality within society."

Dr Desiree Gallimore is a well-credentialed Sydney-based psychologist and mobility specialist. Dr Gallimore's website traveltrainingsolutions here

Life as Jamie Knows It: An Exceptional Child Grows Up
By Michael Berube
Published by Beacon Press

Those of you with children 20 and over will probably remember reading Life as we Know It back in 1996, a book chronicling the early years of Jamie's life. Jamie is now in his mid twenties and this book, as did the first, blends personal narrative with observations about social inclusion, health, advocacy and public policy.

Jamie's Investigations: The Art of a Young Man with Down Syndrome by William Benzon can be read on Academia

Contact: or phone the office 9841 4444

Monday, 11 March 2019


The Housing Hub is a website that allows people with disability to look for SDA (Specialist Disability Accommodation), SSA (Supported Shared Accommodation or Group Home) and private rental vacancies, in four different states. The database is searchable by region.

Tuesday, 5 March 2019

Library Shelf

We have decided to revive and refresh Keeping Up with Down Syndrome NSW as our Library + Information blog. Here we will post information about our library resources as well as other information that will be of interest to our members and readers.

Our library is alive and well, with the exception of general online access to the catalogue, for which we offer apologies and still hold hope for restoration to the outside world! The catalogue works at full capacity but only within our office itself. In the meantime please call the office or email the library and we will assist with your information needs. If you would like to recommend any books or resources for purchase please let us know by email

New Title on the Shelf
Supporting Positive behaviour in children and teens with Down syndrome 
The respond but don’t react method
by David Stein
Published by Woodbine House

David Stein is a paediatric psychologist and co-director of the Down Syndrome program at Boston Children's Hospital. 
The book draws on his wealth of clinical experience with young people who have Trisomy 21. Very much the compact handbook, it is a good title to share with teachers and support workers.
The behaviour management principles covered in the book:
Be proactive not reactive
Be consistent
Use visual shedules and social stories to redirect behaviour
Develop a reward system
Keep emotional reactions in check
Teach siblings to ignore certain behaviours
Know when to seek professional help

Very much the compact handbook, it is a good title to share with teachers and support workers. This is a great read and highly recommended.

More of David Stein's work, available online, below

Dr David Stein discusses his ideas on The Lucky few Podcast from 9 November 2018
The Lucky Few

Behavioral Issues in Down Syndrome, Parts 1 & 2 (duration 24 mins each)
Dr Stein in discussion with Dr Vellody,
on the Children's Hospital of Pittsburgh website

Behaviour and Down syndrome: A practical guide for parents
by David Stein
Published by Children's Hospital Boston
12 page PDF free to download

Wednesday, 27 February 2019

Nicola Grove in Melbourne (Video link available)

STORY WEBS: anecdotal narrative and the fabric of being
Human beings seem to spend a lot of their time together exchanging stories about their lives. These so-called “small stories” are now regarded as critical in building a sense of personal identity, relationships and communities, but are under-represented in research in intellectual disability.  This talk draws on Jayne Clapton’s metaphor of the fabric of integrality, and will illustrate some of the mechanisms whereby the exchange of stories helps to break down barriers and stigma in the lives of people with severe and profound intellectual disabilities.

Nicola Grove has been a teacher, speech and language therapist and university lecturer. She left her job at City London University in 2004 to set up the UK’s first company of storytellers with intellectual disabilities ( Since then she has been researching and developing ways of authentic storytelling for people with severe communication disabilities. She has worked internationally, in Japan, South Africa, Canada and Europe.

Dr Grove will be delivering the (Living with Disability Research Centre) LiDS March seminar at La Trobe University at 3pm on Wednesday 6 March.
If you would like to attend or join remotely via zoom, email Sophia Tipping -

If you are interested in Nicola Grove's work we have a couple of her books in our library.

Voting NSW State Election

Saturday 23 March 2019 is voting day in NSW. In NSW we have 4 year fixed term governments.
How do you cast your vote in the NSW election?
Step 1:
Verify that you are eligible to vote on the NSW Electoral Commission website

Step 2:
If you are not on the electoral roll then you will need to enrol to vote.
This can be done online on the Australian Electoral Commission enrol to vote webpage.
If you would like to use a paper form these can be obtained at a Australia Post office, an AEC office, or one can be mailed to you.
Best option is to read the AEC How to Enrol to Vote Easy English guide for details.

Step 3:
In the NSW election some people are allowed to cast their vote online (iVote) or over the telephone.
Eligibility criteria for iVote:
  • My residence is not within 20 kilometres, by the nearest practicable route, of a voting centre.
  • I cannot read or write, so I am unable to vote without assistance
  • I have a disability (within the meaning of the Anti-Discrimination Act 1977) and because of that disability, I have difficulty voting at a voting centre or I am unable to vote without assistance
  • I am a silent elector.
  • I will be interstate throughout the hours of voting on election day.
  • I will be overseas throughout the hours of voting on election day.
  • I am a person who is blind or has low vision so I am unable to vote without assistance

More details about applying for iVote, and how to cast your vote this way, visit the NSW iVote website
Go forward and express yourselves democratically!

The NSW Council for Intellectual Disability have made a great video about how to vote
Watch it here

Tuesday, 26 February 2019

NSW Education Disability Strategy

Disability Strategy A living document 
Improving outcomes for children and young people, and their families 

Published last week by the NSW Department of Education. Definitely worth a read if you have a child in school or are an educator yourself.
The document outlines areas for immediate focus:
1. Strengthen support
2. Increase resource and flexibility
3. Improve the family experience
4. Track outcomes

Alternative formats available on the departmental website
The easy read version has been really well designed.

Saturday, 23 February 2019

Stand By Me Campaign

Don't Ditch Disability Advocacy

The Disability Advocacy Alliance has organised a rally in Sydney tomorrow.
Where: Martin Place (between Castlereagh and Pitt Sts)
Date: Sunday 24 February 2019
Time: 11am

The Alliance seeks to get the NSW government to commit to secure, long term funding for disability advocacy, information and representation organisations in NSW.

Other things you can do to support the campaign include writing to the Premier, meeting your local MP as we approach the NSW state election, undertake some social media sharing or sign the petition that is running... Stand By Me 

The Stand By Me website contains plenty of information and resources to support the campaign.
The easy read version of the Stand By Me Position Statement is highly recommended

Thursday, 7 June 2018

Ellen's 6 Months Review

It has been six months now since I have been at work at DSNSW. I have learnt some new skills.

  • I am learning how to do some database entry 
  • I do things like: Update their membership, Renew their membership.
  • I make phone calls to the up club members to renew their membership. 
  • Putting people into events they have been to 
  • I got a new article about me in the VOICE magazine. I feel excited I was so happy to show it to my family and friends. 
  • I attend weekly staff meetings and give them a verbal report.
  • I give feedback to the staff on their projects. 
Over the next six months I like to keep learning new skills so that I am busy all the time I really like my job here  

Wednesday, 16 May 2018

Ellen’s tips for a preparing for a job interview

·      Listen to your favourite music to keep you calm
·      I feel good and confident in a new outfit
·      Make sure you double check your resume and bring it up to date
·      Research the company for example, check out their website
·      Find out how long you have to travel to make sure you be there on time
·      If you feel nervous it’s ok to ask if you could bring a support worker with you
·      Prepare the night before for example, lay out your clothes and any documents you might need to take
·      Have an early night

Thursday, 29 March 2018

Our new admin assistant Ellen Hester did a fantastic job presenting at our Education Conference last week.  Here's what Ellen had to say about her experience.

Ellen’s Blog’s                                                        29/3/18

I felt excited when I got to do a speech at the Conference. I also gave some advice to the teachers at the Conference about what I have done at school. I did my presentation on power point slide and talked about what I have done at school. Also I am the new office admin at DS NSW. 

I feel really comfortable when I am giving a speech up on stage. For the good points Marissa gave me a couple of questions I have to answer which it is really good. But for the bad points some teachers didn’t ask me any questions when I gave a speech to them which was fine though.

My friend Rae came to the conference she was a bit nervous but Rae spoke really well. When she gets the hang of it she was fine when she gave the speech to the teachers. Also towards the end of the speech I gave her a box of Favourite chocolates to share with her family. She was really happy I gave it to her.

For Thursday and Friday the people there were really nice. I get to hand out the chocolates to the guest speakers. They did really well and also on the morning and afternoon breaks we get in there and mingle with other people. It continues towards at the end of the day but I left around 1pm. But the food was amazing there were sandwiches and filled pastries and jam drop donuts were my favourite. When I spoke on Friday, when I finished my speech Chris gave me Lint Chocolates which was great. 


Monday, 8 January 2018

World Down Syndrome Day 2018

How you can be part of Down Syndrome Australia's Social Media Campaign in March 2018.
Happy New Year to all our friends and community! We hope 2018 is full of promise and potential for everyone. To get things started, we are already preparing for World Down Syndrome Day 2018 in March. DSA invites you to be part of their Social Media Campaign by contributing your story under the "What I Bring to the Community" theme. DSA wants to hear from people of all ages, telling us about how you are involved in the community.  This could be in your job, your school, your sporting club....anywhere that you feel welcomed, appreciated and belong.  Also, you can tell us about your problems and how you have overcome them, who has helped you, and what advice you have to other people facing similar problems.
All the stories and photos and videos will be compiled into an exciting Social Media Campaign to recognise and celebrate World Down Syndrome Day in March 2018.
Submit your stories to: asap - before 12th January if you can.
And don't stop there!  This blog is the ideal platform to share your stories and hopefully help each other out with how you have overcome challenges in your community.

Thursday, 2 November 2017

We're back!

Hello everyone,

I'm the new blog editor for Down Syndrome NSW.  It's nice to meet you all! I'd like to begin by thanking former editor Jill O'Connor for her ten+ years at the desk  - that's over 4000 posts - and acknowledge her passion and commitment to furthering the cause of our community.  Thank you Jill.

I recently came across this video posted on our facebook.  I considered it very powerful and moving so I'd like to share it now.  Frank Stephens' Opening Statement on Down Syndrome

Friday, 9 June 2017

Thank you for reading ...

After 10 years as blog editor, and 28 years of working in various information roles with Down Syndrome NSW, this is the last of 4,400 posts from me. 
Thank you for reading, for your interest and contributions over the years. 
Contact details for Down Syndrome NSW are in the list of page links at the top of this page, just under the banner.
Jill O'Connor
9 June 2017

Weekend reading and viewing: 10 - 11 June 2017

There is so much in this video that I want to dissect about the Down syndrome diagnosis narrative, but honestly, I don’t feel like making this a resource post… let’s just talk about it as friends do. Is that cool with you? 
But first – watch it if you haven’t ...
Meriah Nicholls, 5 June 2017

Cara discusses common Down Syndrome myths and explain how a community of “rockin moms” (moms of kids who “rock” an extra copy of the 21st chromosome) are working to socially construct society’s “next” conversations about DS through critically examining the impact of our language choices ...
Cara Jacocks, TEDxACU, published  26 May 2017 (video 17m 31s)

... I wrote a column published with the heading “Welcome 8 point 1 point 5 (his birth weight) We love you”, which went on to win an award, while Nick went on to be one of the best things that happened in our lives ...

David Margan, The Courier-Mail, 7 June 2017
At a young age, I learned to be a responsible person. The instinct to be a protective sister came naturally. How could I not? The love of a baby, in my case a younger brother, came so natural. I couldn't imagine anyone not loving or adoring this small person. At this time, I didn't know he had Down syndrome, but it didn't matter. I think I was too young to understand what this even meant, and society wasn't open to those with disabilities during this time ...
Rhoda Penny, Rhoda G's Online Cafe, 29 May 2017

... In expanding your friendship and reading circles to adults from the disability community, you will likely see things from an altogether different perspective, and one that is often highly enlightening!
Blogs are an excellent avenue by which you can forge forth and figure out who sounds most like someone you want to get to know ...

... there are some things my kids intuitively grasp without my help. To my surprise, nearly everyone I meet below the age of 4 just rolls with it when it comes to disability. Ableism hasn’t taken hold yet. Here are five things I’ve seen young children totally understand about disability that unfortunately, most adults struggle with ...

Thursday, 8 June 2017

News and commentary on the NDIS (69)

Q and A: Disability advocate's NDIS 'crash course' (video 2m 44s)
Actor and dancer Kiruna Stamell explained why the National Disability Insurance Scheme was important on ABC's Q and A program. on 5 June 2017

Your Support Worker Is … Disabled?
Sam Connor, Clickability, 16 May 2017
We were speeding through the NDIS conference and I had a coffee in my hand, despite being a manual wheelchair user. My friend was towing me with her electric wheelchair and on this occasion I’d gone to the trouble of bringing a short length of rope – it can get wearing hanging onto someone else’s wheelchair for a full three days. And able bodied people were watching and smiling and making cute comments, because, after all, it’s not a usual thing to see two disabled people supporting each other, is it?

It’s not usual for them, but it’s usual for us ...

The NDIS is making some changes
Disability Loop, 8 June 2017
NDIS Participants got a letter from David Bowen, the CEO of the NDIA on Tuesday. It was sent to Participants through the online portal, and it was also put up on the NDIS website.

The letter was very long, and used a lot of terms that might be hard for people to understand. We've summarised what we think it means in plain language ...

The document from the NDIA CEO:
Participants and providers work with the NDIS to improve processesDavid Bowen, CEO National Disability Insurance Agency (NDIA), 6 June 2017
The Board and Executive Management team of the National Disability Insurance Agency (NDIA) wish to provide information to the Scheme’s existing and potential participants, their families, carers and providers regarding major work that is underway to deliver a significantly upgraded quality of participant and provider experience in a way that remains consistent with maintaining the Scheme’s financial sustainability ...
Christian Porter, Minister for Social Services, 31 May 2017
The Turnbull Government will today introduced legislation to establish the new National Disability Insurance Scheme (NDIS) Quality and Safeguards Commission.

Minister for Social Services, Christian Porter, said the proposed changes to the NDIS Act 2013 would create the Commission and give it powers to regulate NDIS providers, oversee quality and safety of their services and supports, investigate and determine complaints and uphold the rights of people with disability.

“This legislation delivers on the Turnbull Government’s commitment in the 2017 Budget to establish the NDIS Quality and Safeguards Commission, which will oversee protections for NDIS participants as the scheme is progressively rolled out across Australia,” Mr Porter said ...

NDIS Plans Should have a ‘Work-First Approach’
Rachel McFadden, ProBono News, 6 June 2017
The latest figures from the Australian Bureau of Statistics, released Monday, show in 2015 there was a 3 per cent decrease in the number of people with a disability participating in the workforce compared to 2003.

... “We know from other data that the Disability Support Pension population is falling (it peaked in June 2012 and has since fallen by 55,000 people), but the employment rate appears not be rising, suggesting that people with disability are being diverted from one form of income support to another, rather than into work. This is not a good result for anyone,” (National Disability Services CEO Ken Baker) said ...

The Indigenous Uptake of the NDIS is Low And This Must Change
Fran Connelley, Probono News, 29 May 2017
Indigenous Australians are 1.7 times more likely to have a disability than those in the non-Indigenous population (Source: Australian Bureau of Statistics) ...

'Mean-minded' NDIS disability scheme a disappointment: advocate
Miki Perkins, Sydney Morning Herald, 28 May 2017
... Exhausted parents tell him about adult children who have lost funding for their day program, transport or cookery classes. Or inexpert planners who draw up disability plans over the phone, and never meet the person whose life they shape.

So for the first time Mr Stone, head of the Victorian Advocacy League for Individuals with Disability (VALID), has publicly slammed the "mean-minded" National Disability Insurance Scheme ...

The NDIS Has Teething Problems That Must Be Addressed
Rachel Siewert, Pro Bono Australia News, 24 May 2017
Given the National Disability Insurance Scheme has support across the political spectrum there is a reluctance to heavily criticise it despite a parliamentary inquiry which is revealing that the system is beset by major problems, writes WA Greens Senator Rachel Siewert ...

NDIS Planning Workbook
Association for Children with a Disability
ACD’s new NDIS Planning Workbook has been designed by parents of children with a disability, for parents of children with a disability – and is the first planning workbook to be developed with a specific focus on what families need and are asking for.

It’s been designed to help you prepare for your child’s planning meeting with the NDIS ...

Disability Loop eNews Issue #35, 08/06/2017


Down Syndrome Australia is hiring

National Project Manager - part-time job

Down Syndrome Australia is seeking an experienced, highly organised professional to take on the role of National Project Manager. This position will be responsible for the delivery of a project focused on developing resources and information for community organisations on the inclusion of people with Down syndrome. The Project Manager will be responsible for consultation with stakeholders, development of resources, evaluation, reporting and developing a communications strategy.

This is a flexible, rewarding role for a person with expertise in project management, resource development and who has a strong understanding of current issues in the disability sector. Experience in delivering similar projects will be beneficial. This is a part-time 12 month contractual role with location negotiable. For more information and to get a copy of the position description please email

Expressions of interest for this position including a CV and cover letter should be forwarded to Down Syndrome Australia by 21 June.

Wednesday, 7 June 2017

Latest additions to 'events' pages

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

    Restrictive Practices - an exploration of the fundamental issues that arise with the use of restrictive practices within human services
    Friday 30 June 2017 - Parramatta 
    Family Advocacy
    An exploration of the fundamental issues that arise with the use of restrictive practices within human services. Find out how different restrictive practices are used, the personal and social costs involved, and guidelines for how to approach the use of restraints.
    Presenter: Dr Marc Tumeinski

    Medical Safeguarding: the urgent issue of protecting the lives of vulnerable people within medical settings
    9am - 4.30pm Saturday 1 July 2017 - Parramatta 
    Family Advocacy
    Protecting the lives of vulnerable people in medical settings. This workshop will examine complexities around medical settings and provide strategies for upholding protective measures. Highly relevant for medical staff and professionals seeking to better support people with disability in medical environments. 
    Presenter: Jo Massarelli

    17th World Congress: Learn Inspire, Lead
    30 May - 1 June 2018 - Birmingham, UK
    Inclusion International
    The World Congress will bring together people and organisations from all over the world to learn from and inspire each other. Together we will lead the way in making inclusion a reality for people with intellectual disabilities and their families.  
    The event brings together self-advocates, families, and professionals to:
    • learn and share experiences from around the world about issues and challenges faced by people with intellectual disabilities and their families as well as strategies that have been successful in achieving achieve change
    • inspire and be inspired by successes and innovations for inclusive practices
    • lead the way as a global movement in promoting inclusive communities.

    Prenatal Diagnosis of Down Syndrome: Delivering Results in our New Age of Genetic Testing

    A webinar version of a presentation by Dr Brian Skotko, Co-director, Down Syndrome Program, Massachusetts General Hospital, 16 December 2016 (62m 17s)
    In this presentation, Dr. Brian Skotko reviews the latest advances in prenatal testing for Down syndrome. He further reviews the evidence-based research on how physicians can effectively deliver a prenatal and postnatal diagnosis of Down syndrome. The presentation includes highlights from his publications in Pediatrics, American Journal of Obstetrics and Gynecology, and American Journal of Medical Genetics.
    Dr Skotko's approach is congruent with the DSi position statement:

    Down Syndrome International: Position Statement on Prenatal Testing
    ... DSi asserts and defends the right of a woman (or a couple) to information about the human rights and potentialities of children with Down syndrome. 
    DSi encourages a balanced and informed approach to the use of prenatal tests by government policies, the professionals involved and all family members. 
    DSi contends that voluntary screening should be available to all pregnant women on request and the decision to undergo testing has to be made by the pregnant woman (or couple). 
    BUT, that at the time of testing, easily understood information MUST be provided that is up-to-date ...
    ... This information MUST be provided in an unbiased way by well trained professionals who understand their ethical responsibilities as well as having good communications skills and up-to-date information. At the same time, potential parents should be directed to further sources of information ... read the whole statement here.

    Tuesday, 6 June 2017

    Employment matters

    Andrew Heaton, Non-Profit News, 19 May 2017
    In any recruitment process, it is the employer who makes the final hiring decision and who must be persuaded that a particular candidate can help to drive positive outcomes for his or her business.

    This is especially the case when it comes to people with disability ...

    A new approach to disability in the workpplace
    Victoria George, Australian Network on Disability, 26 April 2017
    While people with disability still struggle to find jobs, many employers are introducing positive new strategies to support a diverse workforce ...
     ... “But employers need to be aware of less visible disabilities, such as learning impairments ... We also need to think about adjustments for situations we might not think of as disabilities” ...

    Paying people with learning disabilities lower wages perpetuates inequality
    Rob Greig, The Guardian (UK), 16 March 2017
    Calls to pay people with learning disabilities below the minimum wage fly in the face of the evidence – not to mention the law.
    When is one person of less value than another? According to some, when they have a learning disability and are looking for work. Rosa Monckton, businesswoman and parent of a learning disabled woman, has reignited calls for the law to be changed so that employers can pay people with learning disabilities below the minimum wage. Journalist Libby Purves then chimed in with her support ...

    Campbell Page Set to Transform Views on Disability in the Community
    Pro Bono, 3 April 2017
    The Campbell Page team hopes to make a positive change in the Australian workforce this year by strengthening partnerships with local community and employers by championing disability and inclusion ...

    The Soft Bigotry of Low ExpectationsKelly Vincent, Probono News, 20 February 2017
    ... When it comes to employment it seems that there exists this culture of low expectation, there is also fear, and there is a view that it is absolutely fine to pay someone with a disability $3 (or less) an hour when the rest of us are supported by laws that guarantee us a minimum wage.

    Time and time again I hear about the resistance, ignorance and outright prejudice of employers when it comes to having a conversation around employing people with disabilities ...

    Research news #5 for 2017

    Research Opportunity: The Perspective and Experiences of Families Raising a Child with a Genetic Condition
    While there is research documenting the challenges of raising a child with a genetic condition, there is very little investigating the positive aspects. 
    This study by researchers at the Australian Catholic University aims to explore what opportunities and rewards are experienced by having a family member with Down syndrome and what impact having a family member with Down syndrome had on the lives of family members. 
    Importantly, the study hopes to capture the perspective of parents, grandparents and siblings of an individual with Down syndrome. Family members are encouraged to share stories, anecdotes and perspectives via an online questionnaire. 
    It is anticipated responding to the questions will require about 30 minutes. These surveys are anonymous, and participants aged 12-18 will be assisted to provide parental consent.
    Family members who are interested in participating can email Rebecca Bobin at for more information or click on the link to obtain a participant information statement. 

    Science News Online, 1 June 2017
    A phase 2 clinical trial in young adults with Down syndrome of a drug being investigated for the treatment of Alzheimer's disease supports further investigation of its potential. Results of the four-week trial of scyllo-inositol, also known as ELND005, have been published in the Journal of Alzheimer's Disease. 
    "Through this study, members of the Down syndrome community have demonstrated loudly and clearly that they are eager to participate in clinical trials, particularly studies that provide promise for the treatment of Alzheimer's disease," says Brian Skotko, MD, MPP, co-director of the Massachusetts General Hospital (MGH) Down Syndrome Program, and a site principal investigator for the trial. "This first, industry-sponsored phase 2 trial in the Down syndrome community showed that people with Down syndrome were able to follow the study protocol and that the drug was safe and tolerable" ...
    • The abstract is available free online. Access to the full text of the research report requires purchase:
    Michael Rafii et al, A Randomized Double-Blind, Placebo-Controlled, Phase II Study of Oral ELND005 (scyllo-Inositol) in Young Adults with Down Syndrome without DementiaJournal of Alzheimer's Disease, vol. 58, no. 2, pp. 401-411, 2017

    Monday, 5 June 2017

    Down Syndrome Australia's Quarterly Newsletter: June 2017

    The latest issue of the DSA Quarterly Newsletter has been released today. You can subscribe, free of charge, by emailing

    In this issue:

    Down Syndrome Australia's New Patron
    Down Syndrome Australia is pleased to announce that the Governor General, His Excellency General the Honourable Sir Peter Cosgrove AK MC (Retd), has agreed to be Patron for Down Syndrome Australia.

    We are very honoured that he has agreed to take on this role and look forward to working with him to raise awareness about the issues that matter to people with Down syndrome.

    World Down Syndrome Day Wrap Up

    Get Ready for Step UP!

    Disability Support Pension (DSP)

    Information, Linkages and Capacity Building

    National Disability Insurance Scheme (NDIS)

    DSA Director Finalist for Western Australian of the Year awards

    Current Consultations on Antenatal Guidelines

    Research Opportunity: The Perspective and Experiences of Families Raising a Child with a Genetic Condition


    Current Consultations on National Antenatal Guidelines

    The Department of Health is currently conducting consultations on the National Antenatal Guidelines. These guidelines include recommendations around prenatal screening and information provided to women about Down syndrome during their pregnancy.

    Down Syndrome Australia believes that prenatal screening must be accompanied by appropriate information to support families in making informed decisions – both about the screening and how to respond to the results.

    Currently many families do not get the information and support they need to make informed decisions.

    Down Syndrome Australia will be developing a submission to the new Guidelines and would welcome any input to our submission by email ( before 15 June.

    Friday, 2 June 2017

    Weekend reading and listening: 3 - 4 June 2017

    When I first started teaching sexuality education, I focused on people with disabilities, the parents and carers of people with disabilities, and professionals who worked with people with disabilities. I truly loved my work. When I moved back to the United States, I attempted to bring that work with me, pitching various disability support organizations around Chicago to teach sexuality education. The best response I got was...let’s call it polite disinterest ...
    Kim Cavill, Chicago Now
    23 May 2017

    ... Perhaps because of some of the early beliefs that people with developmental disabilities are nonsexual, they have not had access to appropriate and adequate sexual education. Sex education, within the typical population, is gradually shifting from being based on the assumption of heterosexuality to being more inclusive. But even the discussions around these shifts have not occurred to the same extent in the service-providing sector for people with developmental disabilities ...
    Speaking OUT: Understanding Sexuality and Diversity in 
    LGBTQ+ Individuals with Developmental Disabilities
    Megan Abou Chacra, Yona Lunsky and Dave Hingsburger, 
    International Journal for Direct Support Professionals, Volume 6, Issue 6 
    June 2017

    ... It took me this long to realize that my fellow parents are only part of the puzzle and they can only offer me so much peace of mind. Only people who live with Down syndrome can walk me through what it feels like. 
    Oh, but that’s ok, we tell ourselves. We justify our non-involvement of people with Down syndrome by saying we are having private conversations or that we are talking about things only parents can understand. Let me be clear: these things are ok and good and helpful. The problem starts when we don’t leave that bubble, or react with anger when disabled voices encroach on that bubble ...
    Melissa Stolz, Two Thirds of the Planet
    12 January 2016

    ... When she got to the cashier she pulled out her money and gave it over. Here's the amazing thing. It's a small thing. But it's a huge thing too. During the time she was paying, and accepting the change, and putting it back into her purse, she never looked to him. She didn't look for approval. She didn't look in fear of having made a mistake. She didn't look to him for a cue of any kind. She just did what was needed to be done and then picked up her tray and moved on, going ahead, while he paid, to select a table ...
    Dave Hingsburger, Of Battered Aspect 
    20 May 2017

    Comic book fans are very attached to their universe, but are they ready for a superhero with a disability? A new comic, Superb, debuts in July featuring a character with Down syndrome. Author Sarah Kanake's brother has Down syndrome and she's written a novel featuring a main character with the condition. Hilary Harper talked to her on Saturday Breakfast ... (8m 24s audio file)
    Hilary Harper, Saturday Breakfast (ABC Radio Melbourne)
    27 May 2017

    #7 “ People with disabilities are an unfortunate drain on society.”

    The Facts: Considering the ways society limits the lives of people with disabilities, it’s the other way around: society is a drain on people with disabilities. 
    Significant contributions made by people with special needs to our communities are well documented.
    Tim Villegas, Think Inclusive, 13 January 2015