Address details

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

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

    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 ...

    Wednesday, 31 May 2017

    People with Down syndrome

    Woman with Down syndrome addresses United Nations: ‘I have a right to live’
    Nancy Flanders, Live Action News, 27 May 2017
    After watching the documentary “A World Without Down Syndrome,” 21-year-old Charlotte Helene Fien, who has Down syndrome and autism, wrote a speech about her right to life that she would later read in front of the United Nations ...
    Cindi Rich, Bethesda Magazine, May-June 2017
    The Kensington teen is busy with cheerleading, homework and hanging out with friends—things her parents weren't sure she'd ever do ...

    Capturing the Moment: Starlings in Rome
    David Kenward Photography, 19 May 2017

    When I watched the film of the starlings in Rome in Planet Earth II I really wanted to go and see them and see if I could take some photos of them. So I went with my brother Chris, Nathan and best friend Josh. This is the beautiful film my brother Chris made of the weekend. We had great fun, I hope you like it ...
    ‘Not just a job, he’s got a career!’ says Mum as son with DS lands sought after science careerHR News, 18 May 2017
    As talent shortages persist, employers cannot afford to ‘write off’ any group of potential workers, yet it is significantly harder for adults with learning disabilities to obtain work than almost any other client group. Individuals with Down’s syndrome battle misperceptions about their capabilities and often can’t even get an interview ...

    Children’s Hospital Employee With Down Syndrome Inspires Doctors, Patients
    Paul Burton, Boston CBS Local,16 May 2017
    Anyone interested in the secret to success should take a lesson out of Nathan Simons’ playbook. Nathan is the first full time employee with Down syndrome at Boston Children’s Hospital.

    “I just love it! I love the people who come here and give good feedback,” Simons said ...

    Tuesday, 30 May 2017


    Speak Up and Be Safe from Abuse - Communication toolkit and resources
    Abuse is not ok. Everyone has the right to speak up. Scope was supported by the Victorian Government to produce a communication toolkit and resources for people with communication difficulties, to assist individuals to identify and report abuse ...

    Wiki technology helps people with disabilities tell their stories

    Durango Herald, 10 December 2016
    Twenty-five years ago, if any wiki existed, it was a lyric from a Sheb Wooley song. Today, wiki technology shapes the way many of us access information. In the future, it may be the way people with intellectual disabilities tell their stories and manage their care ...
    Endeavour Foundation
    Friendship is an important part of life for most people, and brings a sense of shared interests, connectedness and trust. Sadly, there are some people who will use friendship to take advantage of others for their own personal gain.
    Mate crime happens when a person is ‘befriended’ by someone who goes on to abuse or exploit that friendship. Most recently the shocking US crime involving a mentally disabled young man who was tied up for five hours and horrifically assaulted by a group led by his school 'friend' while being broadcasted on Facebook Live is an extreme example of such abuse of friendship and trust.

    ... We have produced an Easy Read Guide for people with an intellectual disability that’s designed to prevent mate crime. Download the guide ... and use it to help you have a conversation with the person you care for about the nature of true friendship and about mate abuse.
    Young Carers NSW
    Are you 25 years or under? Do you help to care for a family member or friend? If so, you might be a young carer. Young carers are children and young people, 25 years or under, who help to support a family member or friend who has a disability, mental illness, drug or alcohol dependency, chronic condition, terminal illness or who is frail.

    The Who Cares? App is a free narrative based, self-identification tool designed to help young people with caring responsibilities to recognise their role and get the support they need. The App is home to the stories and voices of real young carers from all over NSW. The easy to use sharing function enables users to share these stories outside the App, with the broader community, giving the app an important role in building public awareness about the unique experience of young carers ...

    Scrapheap Adventure Ride returns for the eighth year - the biggest and best ride yet!

    The Scrapheap Adventure Ride is a unique fundraising event which involves motorcycle enthusiasts from all over the country purchasing a bike for no more than $1000 and doing it up for an adventure ride through the Aussie outback, all while raising money for people with Down syndrome.

    Last year we had a blast at Four Corners Farm Stay in Nymagee. We had 101 riders and together we raised over $97,000! This year we are aiming to top that and raise a new record of over $100,000 with100 plus riders.

    Our destination for 2017 is Green Valley Farm near Tingha, which in turn is near Inverell in Northern NSW. We will be camping and Scrapping on the weekend of September 29 to October 1.

    We will have the Adventure Moto Ride departing Wisemans Ferry at 8am on Thursday September 28. Warren Sakey, once again, has a great ride planned and we will be overnighting at Quirindi. More details to follow.

    As always, there will be an Adventure ride loop on the Saturday where we are sure there will be thrills and possibly a few spills. On Saturday evening, there will be plenty of fun and entertainment for the whole family, including open mic music during our celebratory dinner auction and awards ceremony.

    Of course, the best part of any Scrapheap is catching up with your mates and the friendly competition between teams and raising money for Down Syndrome Australia/NSW. However raising money is not our only objective as I am sure there will be a few drinks raised over the weekend as well.

    Remember it is a family weekend and Green Valley farm also offers a wealth of activities for everyone including the kids, so why not bring the whole support crew!

    Catering packages and accommodation options info will be provided shortly.

    The registration this year is $100 for all bikes (Scrapper or non-scrapper), Please help us make this the most successful and fun year ever.

    If you can't join us, we hope you will be able to sponsor one of this year's riders or teams. Make sure you connect with other Scrappers on Facebook by joining the Scrapheap group.

    Monday, 29 May 2017

    News and commentary from the broader disability community

    Disabling Ableism (podcast 19m 04s)
    Anne Kavanagh, Pursuit, 15 March 2017
    Professor Anne Kavanagh from the Melbourne School of Population and Global Health shares how changes in her own life led her to question our understanding of the health of those living with a disability. A proud activist, Professor Kavanagh says having a disability need not equal poor health ...

    The fidget spinning fad and disability discrimination
    Ingrid Robeyns, Crooked Timber, 21 May 2017
    ... So here we see disability discrimination at work. For some neuro-atypical and disabled people, stimming is a way to reduce stress, and indeed also to concentrate better. But often they are told not to do this. The same holds for other forms of behaviour that neurotypicals consider ‘abnormal’. The fidget spinning just shows how much of a social convention, and hence form of domination, those social norms regarding ‘normal behaviour’ are, and that at least some of those conventions are biased against the needs of some groups of disabled people and neuro-atypicals ...

    New short documentary shines a light on adults with intellectual disabilities
    Social Work News, McMaster University (Canada), 11 May 2017
    A new short documentary film – part of a research project led by the McMaster School of Social Work's Ann Fudge Schormans – is providing a unique glimpse into the lives of adults with intellectual disabilities living in Toronto.

    What if you didn’t feel welcome in the city you live in? What if you didn’t feel comfortable, or even safe, going into stores or taking transit? What if, wherever you went, you felt like people were staring at you? For many of us, that kind of alienation is hard to imagine, but for many people with intellectual disabilities, it’s a part of everyday life ...

    Government response to calls for Royal Commission

    "We know best". A Royal Commission into institutional abuse of people with disability has again been rejected by the Australian government
    Catia Malaquias, Starting with Julius, 27 May 2017
    ... the Social Services Minister Christian Porter ... says that “we take the view that engaging in real and immediate and very substantial reform — which is precisely what we’re doing — is a much better response than yet another inquiry.” He was referring to the new NDIS Safety and Quality Commission which won’t apply to people with disability outside the NDIS and will only hear complaints as to the future from when it is established.

    But a Royal Commission is not just “another inquiry”. It is a real inquiry with real powers, appropriate protections and greater capacity to be accessible for people with disability, particularly in institutional settings ...

    Friday, 26 May 2017

    Weekend reading and viewing: 27 - 28 May 2017

    Austin Underwood, 39, went to college right out of high school, and studied to be a prep chef. He’s lived on his own ever since graduation, but since jobs in the restaurant business were hard to find, he worked at a local grocery store for 13 years before asking a local restaurateur for a job. And in the last two years, it’s incredibly exciting to hear how his dreams have begun to unfold!
    Austin Underwood
    In My Own Words, 16 May 2017

    Most of us take for granted the ability to have fluid, seamless verbal interactions on a daily basis. This is likely due to the fact that many of us learn the skill of speech with little to no effort. It “miraculously” just occurs. Consider, though, that for your minimally verbal child, these “simple” interactions can be extremely frustrating and require an enormous amount of work ...
    Damon Murtha, Friendship Circle
    16 May 2017

    ... Benjamin is my son whom I love with all my heart. Nothing will ever change that, and understanding what is truly going on with him will make it easier to give him the help he needs. So, with a deep breath and a new resolve I told my husband, “I think we should have Benjamin tested for autism” ...
    Dana Hemminger, Reflections from Holland
    29 April 2017

    ... But sometimes, when things happen fast, I do notice. I notice not the disability in particular but the life the person with the disability is living. I notice the engagement that people have in their world or with others in their community. I notice that they are caught up in life, in the best way possible. I think this is noticeable to me because I grew up in a world without disabled people in it ...
    Dave Hingsburger, Of Battered Aspect
    28 April 2017 

    Anh Do's guest this week is inspirational five-time Paralympian Kurt Fearnley. Anh tries to capture the charming larrikin's 'never say die' attitude.
    Series 2 Ep 7, ABC TV on iView until 14 July 2017

    Based on the New York Times bestseller, WONDER tells the inspiring and heartwarming story of August Pullman. Born with facial differences that, up until now, have prevented him from going to a mainstream school, Auggie becomes the most unlikely of heroes when he enters the local fifth grade. As his family, his new classmates, and the larger community all struggle to find their compassion and acceptance, Auggie’s extraordinary journey will unite them all and prove you can’t blend in when you were born to stand out.

    Down Syndrome Australia welcomes Labor’s Support for a Royal Commission into institutional abuse of people with a disability

    Down Syndrome Australia
    26 May 2017
    Down Syndrome Australia welcomes the Labor Party’s announcement today that they will support a Royal Commission into institutional abuse of people with a disability. 
    Down Syndrome Australia, along with many other organisations in the sector has long supported the establishment of a Royal Commission. A Royal Commission would provide a comprehensive, independent review into long standing issues of abuse and will enable people with a disability to tell their stories and will provide justice for victims. It would also make important recommendations on reform, policy, and practices to address issues of abuse. 
    This decision by the Labor Party follows a 2015 Senate Inquiry into Violence, abuse and neglect against people with disability in institutional and residential settings that found that abuse against people with a disability was ‘epidemic’’ and recommended a Royal Commission. Recent media reports have provided further evidence of the problems which are occurring in some residential settings. 
    Down Syndrome Australia CEO Dr Ellen Skladzien said, “We are pleased that the Labor party has committed to supporting a Royal Commission. We renew our call for the Government to initiate a Royal Commission into violence against people with a disability. For too long violence and abuse against people with a disability has been overlooked.”

    Labor Party statement to advocates for a Royal Commission into violence and abuse against people with disability
    Hon Bill Shorten MP, Leader of the Opposition, Senator Carol Brown, Shadow Minister for Disability and Carers, Hon Jenny Macklin MP. Shadow Minister for Families and Social Services, 26 May 2017
    Today we announced that a Labor Government will establish a Royal Commission into violence and abuse against people with disability.

    We have listened to people with disability and their families who have clearly stated that they want to see a Royal Commission into these reports of abuse.

    Opposition response to calls for Royal Commission

    In response to continued lobbying from the disability community:

    Federal Labor calls for royal commission into institutional abuse of people with a disability

    Alexandra Beech, ABC News, 26 May 2017
    Federal Labor is calling for a royal commission into the abuse of people with a disability. 
    It comes after a Senate inquiry recommended establishing a royal commission into the disability sector in November 2015. 
    The co-chief executive of People With Disability Australia, Matthew Bowden, has welcomed Labor's announcement, saying violence against people with a disability was at "epidemic levels" ...

    Labor pledges royal commission on abuse of people with disabilities
    Amy Remeikis, Sydney Morning Herald, 26 May 2017
    ... Opposition Leader Bill Shorten said Labor would lobby the Turnbull government to establish a commission on violence and neglect in the disability services sector, and make it a priority if elected.
    A joint Senate committee, set up in 2015 in response to growing concerns and media coverage of failures and abuse within the system, recommended a royal commission be established to help bring about change ...
    Call for Royal Commission into abuse of people with disability
    Inclusion Australia, 26 May 2017 (Endorsed by NSW Council for Intellectual Disability)
    “As a woman with an intellectual disability, I can say that abuse from people who were supposed to be caring for me has had a very bad long term impact on my life”, says Heather Forsyth.

    Ms Forsyth is Inclusion Australia’s Our Voice Chairperson and knows first-hand the devastating impact abuse and violence against people with disability has on lives.

    Inclusion Australia and its member organisations are supporting the call for a Royal Commission into the abuse of people with disability. And pressure is mounting for the Government to step up and do the same, with Opposition Leader Bill Shorten and Shadow Minister for Families and Social Services Jenny Macklin, today also calling for a Royal Commission into the abuse of people with disability.

    Thursday, 25 May 2017

    All-abilities netball: Gladesville (Sydney)

    News and commentary on the NDIS (68)

    NSW NDIS information events
    • Links to events for all states are listed in the left side-bar on this page

    NDIS Guides for Physicians and Paediatricians
    Royal Australian College of Physicians
    The rollout of the National Disability Insurance Scheme (NDIS) across Australia will change the disability interface with existing sectors, including health. The RACP's NDIS Guides are a resource for physicians, paediatricians and other health professionals to access practical information that can help them navigate the scheme, and support their patients ...
    Can the NDIS deliver?
    Helen Dickinson, Pursuit, University of Melbourne, 23 May 2017
    ... Recently, Australia was ranked last in an Organisation for Economic Co-operation and Development (OECD) study of quality of life of people with disabilities, and with the significantly worse outcomes experienced by people with disabilities, the NDIS is a welcome reform. 
    We recently embarked on a research project, funded by the University of Melbourne’s Social Equity Institute, to explore the degree to which the NDIS is achieving its aims and objectives from the perspective of people with disability using these services ...

    National ILC Grant Success
    Down Syndrome Australia, 23 May 2017
    Down Syndrome Australia is pleased to announce that we were successful in the recent ILC National Grant round on behalf of the Down Syndrome Australia Federation. 
    This grant will allow DSA to develop a national Toolkit to provide information to schools, employers, community organisations and others to build capacity in mainstream organisations. It will further compliment the Jurisdictional ILC Grant won previously, which included funding for resources that will be targeted more for people with Down syndrome and their families. 
    We are thrilled for this new opportunity and look forward to working across the Down Syndrome Australia Federation to deliver these important projects over the next 12 months.

    In addition, some of the national ILC grants awarded to other organisations, will also benefit people with intellectual disability quite broadly by helping to make mainstream services and communities generally more inclusive.

    Federal budget 2017: The people (mostly women) the NDIS forgot
    Jenna Price, Sydney Morning Herald, 23 May 2017
    ... "The focus on the national disability insurance scheme is clearly important for those who receive funding through the scheme – but that's not everyone. And the mere mention of the NDIS makes everyone think that all issues around disability are sorted" ...
    Gabrielle Chan, The Guardian, 15 May 2017
    Disability groups have warned Labor it would be a shame to create a political fight over the Turnbull government’s plan to increase the Medicare levy to fully fund the National Disability Insurance Scheme ...

    Is NDIS really as scary as people say it is?
    Lochlan and Tanya Rogers, Every Australian Counts, 9 May 2017
    ... Why are people fighting the NDIS? It’s time to embrace the NDIS. 
    Yes the process was always going to be hard, yes you still have to fight for what your child might need, but let’s keep it real. The process is challenging, it needs to be to enable the correct people to access the support. We need to make sure we are getting value for the money we receive. 
    But most importantly we need to stop fighting the NDIS and stop scaring people away from the NDIS ...

    Cheryl McDonnell, InCharge, 3 January 2017
    ... The NDIS won’t pay for your groceries, but they will pay for a support person to take you shopping if that is a support that you need. 
    Think of the things that any non-disabled person pays for themselves, these are the things that NDIS does not pay. Belonging to a club or sport, registration for these or uniform and basic equipment are all costs a non-disabled person pays for themselves ...

    How will the NDIS change Australian cities?
    Ilan Wiesel, Carolyn Whitzman, Christine Bigby and Brendan Gleeson, Melbourne Sustainable Society Institute, March 2017
    People with disability represent a fifth of the Australian population (AIHW 2015), and this proportion is expected to increase with population ageing. With the National Disability Insurance Scheme (NDIS) being progressively rolled out across Australia, this is a particularly appropriate time for the Australian urban research agenda to engage with disability in more meaningful ways ...


    Wednesday, 24 May 2017

    Support for the call for a Royal Commission into violence and abuse against people with disabilities

    Down Syndrome Australia
    22 May 2017
    The call for a Royal Commission into violence and abuse against people with disabilities is growing. 
    Down Syndrome Australia, along with many other organisations has long supported the establishment of a Royal Commission. 
    The Federal Government says NDIS Safeguards will prevent violence and abuse. The safeguards are crucial but they will not safeguard all people in all situations. 
    We welcome the latest actions including last week's open letter to the government by over 100 prominent Australian academics, and this statement by Disabled Peoples Organisations Australia.

    You may have already signed the petition following the Four Corners program back in March, but please also give your support by adding your name to the DPOA statement.

    Blind academic calls for Royal Commission into abuse of people with disabilities UQ News, 23 May 2017
    A legally blind academic from The University of Queensland has thrown his full support behind a petition demanding Prime Minister Malcolm Turnbull launch an immediate Royal Commission into the abuse of disabled people ...

    Research news and commentary #4 for 2017

    Down Syndrome Research Forum 2017, UK (posted yesterday)

    For people with Down syndrome, varying test results can make it harder to get the right vision prescription
    Eureka Alert, 4 May 2017 -
    Even objective, automated vision testing--using a device called an autorefractor--gives variable results in patients with Down syndrome, reports a study in the May issue of Optometry and Vision Science, the official journal of the American Academy of Optometry ...

    The Arizona Cognitive Test Battery for Down Syndrome: Test-Retest Reliability and Practice Effects
    Jamie O. Edgin, American Journal on Intellectual and Developmental Disabilities, May 2017
    A multisite study investigated the test-retest reliability and practice effects of a battery of assessments to measure neurocognitive function in individuals with Down syndrome (DS). The study aimed to establish the appropriateness of these measures as potential endpoints for clinical trials. Neurocognitive tasks and parent report measures comprising the Arizona Cognitive Test Battery (ACTB) were administered to 54 young participants with DS (7–20 years of age) with mild to moderate levels of intellectual disability in an initial baseline evaluation and a follow-up assessment 3 months later. Although revisions to ACTB measures are indicated, results demonstrate adequate levels of reliability and resistance to practice effects for some measures. The ACTB offers viable options for repeated testing of memory, motor planning, behavioral regulation, and attention. Alternative measures of executive functioning are required.
    Article Citation:
    Jamie O. Edgin, Payal Anand, Tracie Rosser, Elizabeth I. Pierpont, Carlos Figueroa, Debra Hamilton, Lillie Huddleston, Gina Mason, Goffredina Spanò, Lisa Toole, Mina Nguyen-Driver, George Capone, Leonard Abbeduto, Cheryl Maslen, Roger H. Reeves, and Stephanie Sherman (2017) The Arizona Cognitive Test Battery for Down Syndrome: Test-Retest Reliability and Practice Effects. American Journal on Intellectual and Developmental Disabilities: May 2017, Vol. 122, No. 3, pp. 215-234.
    • Abstract online, full text available for purchase 

    Outcome Measures for Clinical Trials in Down Syndrome
    Anna J. Esbensen et al, American Journal on Intellectual and Developmental Disabilities, May 2017

    Increasingly individuals with intellectual and developmental disabilities, including Down syndrome, are being targeted for clinical trials. However, a challenge exists in effectively evaluating the outcomes of these new pharmacological interventions. Few empirically evaluated, psychometrically sound outcome measures appropriate for use in clinical trials with individuals with Down syndrome have been identified. To address this challenge, the National Institutes of Health (NIH) assembled leading clinicians and scientists to review existing measures and identify those that currently are appropriate for trials; those that may be appropriate after expansion of age range addition of easier items, and/or downward extension of psychometric norms; and areas where new measures need to be developed. This article focuses on measures in the areas of cognition and behavior.
    Article Citation:
    Anna J. Esbensen, Stephen R. Hooper, Deborah Fidler, Sigan L. Hartley, Jamie Edgin, Xavier Liogier d'Ardhuy, George Capone, Frances A. Conners, Carolyn B. Mervis, Leonard Abbeduto, Michael Rafii, Sharon J. Krinsky-McHale, Tiina Urv, and Outcome Measures Working Group (2017) Outcome Measures for Clinical Trials in Down Syndrome. American Journal on Intellectual and Developmental Disabilities: May 2017, Vol. 122, No. 3, pp. 247-281.
    • Abstract online, full text available for purchase

    New research shows role-playing disability promotes distress, discomfort and disinterest
    Science Daily, 11 April 2017
    ... a recent study published by Michelle Nario-Redmond, Ph.D., professor of psychology, reveals that disability simulations often result in feelings of fear, apprehension and pity toward those with disabilities, proving Nario-Redmond's thesis that disability simulations do more harm than good ...
    • Abstract online: Michelle R. Nario-Redmond, Dobromir Gospodinov, Angela Cobb. Crip for a Day: The Unintended Negative Consequences of Disability Simulations, Rehabilitation Psychology, 2017

    Most of our readers will not qualify to participate in this study, but will be interested that it is being done:
    We are launching a new clinical study for people with Down syndrome that will test the safety and tolerability of an investigational vaccine which might delay the onset of Alzheimer’s disease-related cognitive decline.

    Since individuals with Down syndrome develop Alzheimer’s at a much higher rate than the general population, this study will test whether an investigational vaccine can affect Alzheimer’s-related brain changes in people with Down syndrome. This is the world’s first clinical trial to test an anti-amyloid vaccine for possible treatment of Alzheimer’s disease in people with Down syndrome  25 to 45 years of age. 
    The study is a randomized, placebo-controlled, double-blinded Phase I study. Study participants will be randomly given either the active investigational vaccine or a non-active placebo. The study will last 24 months. 
    For more information please visit

    Tuesday, 23 May 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 

      "Kill Off" - exclusive screening
      6.30 pm Friday 2 June 2017 - Illawarra Performing Arts Centre (IPAC), Wollongong
      Flagstaff Group
      Produced by Bus Stop Films in collaboration with The Flagstaff Group, Kill Off promotes inclusion in the film industry for people with disabilities. 
      Check out the event page to keep up to date with all the information and updates.

      Adult Siblings Catch-Up Sydney
      10am -12 noon Saturday 3 June 2017  -  Marrickville
      Siblings Australia
      Do you have a brother or sister with disability?  
      All sibling relationships can be complex and ever-changing, but when a brother or sister has a disability it can be even more complicated.  
      Siblings Australia is establishing local peer support networks to share support and information, and we welcome all adult siblings no matter what role you play in your brother/sister’s life. As one sib said at the first group, ’I don’t feel so alone anymore’. 
      Register via or email

      Down Syndrome Research Forum 2017, UK
      19 and 20 September 2017 - University of Hertfordshire, UK
      Down Syndrome Education International
      The Down Syndrome Research Forum is a regular international event where researchers and practitioners meet to discuss current research, recent findings and implications for practice. 
      Researchers and postgraduate students from throughout the UK, Europe, and elsewhere are invited to attend. We also encourage contributions from education and healthcare professionals working with people with Down Syndrome. We also welcome parents of children with Down syndrome and others with an interest in the detail of current research.