Address details

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

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

    Thursday, 1 June 2017

    Education matters

    Henrietta Cook and Timna Jacks, The Age, 29 May 2017
    Sometimes when Angus arrived at school, his classroom was empty. All the students were on an excursion, except for him ...

    Principals under pressure to enrol children with disabilities without support
    Andrew Taylor, Sydney Morning Herald, 28 May 2017
    A lack of support and resources to teach children with disabilities or special needs has resulted in unsafe classrooms for teachers and students, a survey has revealed ...
    Students with disability lack government funding to excel at school, statistics show
    Norman Hermant, ABC, 20 May 2017
    The revelation earlier this year that hundreds of thousands of students with a disability are in school without any additional funding to support their education has been reinforced by new statistics ...

    Teresa Cooper, The Educator's Room, 1 May 2017
    As a special educator for eight years, I can honestly say that most teachers have good intentions when it comes to reaching all children. That said, not all teachers are comfortable with, or even express happiness with, having special education students in their classrooms ... teacher bias against special education students is real, and given the fact that a more positive attitude leads to more positive results (MarFarlane and Woolfson), it must be addressed ...

    The Path to Higher Education With an Intellectual Disability
    Hayley Glatter, The Atlantic, 1 May 2017
    Like many college students pestered by nosy relatives, Sydney Davis, a sophomore, is not exactly forthcoming when her boyfriend comes up in conversation. The couple has been together two years, Davis says with the exasperated tone of a young adult clearly trying to change the subject. Davis’s friend, Annsley James, a sophomore wearing a windbreaker with her sorority’s letters on it, sits on the opposite side of the room giggling.

    It’s a scene that takes place across college campuses: two friends exchange knowing glances during history lectures, at basketball games, in line at the dining hall. But unlike the majority of young adults pursuing higher education in the United States, James, Davis, and their classmates are doing so with intellectual disabilities ...

    The Pro and Cons of Disability Inclusion in School: Inclusion vs. the Self Contained Classroom
    Meriah Nicholls, 26 April 2017
    This week in the “Pro/Con” series we have Liz (from Ruby’s Rainbow) and Megan (from My Stubborn Little Miss) talking about Disability Inclusion in school. Both are talking about it from the perspective as a parent to a child with Down syndrome.

    I need to say that I asked begged Megan to do this because she’s a Special Ed teacher and can; she doesn’t actually have her own daughter in a self-contained classroom, she’s just providing food for thought here ...