Address details

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

Friday, 31 March 2017

Weekend reading and viewing: 1 - 2 April 2017

Alastair McEwin on Fighting the Good Fight
Down Syndrome Australia, 28 march 2017
At the recent WDSD Parliamentary Morning Tea hosted by DSA and the Parliamentary Friends of Disability at Parliament House Canberra, we were fortunate enough to have Disability Discrimination Commissioner Alastair McEwin deliver a speech ...

‘Having a sister with Down’s Syndrome has enriched our lives’
Claire Howie, Belfast News Letter, 22 March 2017
... It wasn’t until I was around 10 years old that I began to understand that Rachel had Down’s syndrome and I started to realise the implications this had on her and the rest of our family ...

A world without Down’s Syndrome? Is the non-invasive test for Down’s a positive medical breakthrough or a tool for eugenics?
Rebecca Bennett, University of Manchester Policy Blogs, 27 March 2017
In 2018, Non-Invasive Prenatal Testing for genetic conditions and variations will be available on the NHS. Here, Professor Rebecca Bennett looks at the controversy over this test being used to detect Down’s syndrome and argues for a policy of voluntary non-directive screening and testing ...

People with dual diagnoses should be included in the spotlight on World Down Syndrome Day
Gillian Marchenko, Key Ministry, 7 March 2017
... As a parent of two daughters with Down syndrome, I think World Down Syndrome Day is fantastic. I really do. But you know what? Sometimes, it’s not so fantastic. Here’s why ...

To the Brokenhearted on World Down syndrome Day
Mumma Love, 22 March 2017
... For those who will forever love a person with Down syndrome who is no longer in this world. You have been lucky enough to know the light and love and hugs that only someone with Down syndrome can give, and now you bear the grief of living without them. You accepted the role of advocate, defender and cheerleader, and sometimes it’s hard to watch the children with almond eyes grow up when your child cannot. Know that you will always be a part of this T21 tribe ...

You can’t be upside down in the gallery

Leticia Keighly, Embracing Wade, 26 February 2017
...when Wade throws his shoes across the room and announces, ‘Wade does Not. Like. Putting. On. Shoes. ANY. MORE!’ part of me is truly thrilled at the excellent sentence structure and improving articulation. I high-five him mentally over his expression of choice and fearless nature in the way he speaks his mind. I admire the award-winning performance whereby he pretends to have a tantrum by melodramatically crossing his arms and pretending to pout ...

New DSA Voice Editor sought

Managing Editor: Voice, the journal of Down Syndrome Australia
Down Syndrome Australia is seeking an experienced, highly organised professional to take on the role of Managing Editor of Voice. This is a unique opportunity to take on the responsibility of providing high-level management, quality assurance and content development of a journal published three times a year.

The Managing Editor has responsibility for developing the themes and content, commissioning articles, writing and editing copy, and managing the layout process, publication and distribution of each issue of the journal. This is a flexible, rewarding role for a person with expertise in publishing or journalism and who has a strong understanding of current issues in the disability sector. 

This is a part-time consultancy role that may be based from home. For more information and to get a copy of the position description please email

Expressions of interest for this position including a CV should be forwarded to Down Syndrome Australia by 26 April.

Thursday, 30 March 2017

News and commentary on the NDIS (64)

Carmel Laragy, The Conversation, 29 March 2017
Monday’s Four Corners program, Fighting the System, was deeply disturbing viewing. It detailed shocking sexual abuse allegations of two residents at a group home for people with disabilities.

... If the NDIS is implemented in accordance with its legislation, it could mitigate some of the abuse and the distress experienced by people with disability. But it won’t be able to address all the other issues raised by Four Corners ...

If I had my time again ...
Rob Woolley, Disability Services Consulting, 28 March 2017
... I’ve worked in either the Barwon, Hunter or ACT trial site since day one of the NDIS and speaking as a Provider, it’s given us a whole new set of challenges to work with. Every day is a learning experience working in and around the NDIS, and some of these lessons have been lightbulb moments while some have been hard-fought and ground out through lots of costly mistakes.

I am regularly asked “If you could wind back the clock and do something differently, what would it be?”. These are things I wish I had known three years ago ...

NDIS housing rules for people with a disability could be life-changing
Libby Calloway, Kate Tregloan, The Conversation, 23 March 2017
The National Disability Insurance Scheme (Specialist Disability Accommodation) Rules were tabled in federal parliament in mid-March. The new rules offer the possibility of an inclusive Australian society that enables those people with the highest disability-related support needs to have equal access to mainstream services including housing ...

Privatising NDIS services could be a repeat of the VET-fee disaster
Rod Sims, Sydney Morning Herald, 14 March 2017
Say the word privatisation and chances are you will get a passionate response either for or against. While the privatisation of infrastructure can and should yield considerable public benefit, we often see the privatisation of public assets done badly and see rising prices where usually the reverse should occur ...

And the winner is ... culture
Vanessa Toy and Roland Naufal, Disability Services Consulting, 13 March 2017
We’ve seen enough rounds of the NDIS to declare culture as the winner. Culture is the dominant force in organisations. We often use one of Rob Woolley’s favourite sayings culture eats process for breakfast, because culture has both the appetite and the power to override any process-driven management effort. Attend well to culture and it will support all your efforts. Ignore it and it will devour any strategies that do not align with it ...

Prisoners are excluded from the NDIS – here’s why it matters
Jesse Young and Stuart Kinner, The Conversation, 14 March 2017
The National Disability Insurance Scheme (NDIS) is designed to provide access to personalised supports and services for all Australians with a disability. However, the NDIS specifically excludes prisoners ...

Building an Ordinary Life
Wendy Williams, Pro Bono News, 6 March 2017
... (Matthew Wright) has personal experience of disability being partially deaf and a part of Australia’s signing deaf community (fluent in Auslan).He is a passionate believer in the dream of the National Disability Insurance Scheme for people with a disability to live “an ordinary life” as part of the community.
In his role as branch manager design and inclusion, his team consults with individuals, stakeholders and peak bodies to ensure that their views and opinions are reflected in NDIS projects and key decisions.

NDIS must have a consistent national model with all in!
Australian Federation of Disability Organisations
, 3 March 2017
In light of recent media activity, the Australian Federation of Disability Organisations (AFDO) reiterates its support for a national approach to the NDIS. This includes WA joining the complete Commonwealth NDIS to ensure Western Australians with disability are not compromised by a multi-layered system.

“We are concerned that the WA government is not listening to people with disability when it comes to the future provision of services and supports. People with disability are clear they want WA to be a part of the national NDIS system,” said Mr Ross Joyce, AFDO CEO ...

Norman Hermant, ABC News, 3 March 2017
The number of people joining the National Disability Insurance Scheme (NDIS) jumped dramatically in the last three months of 2016, according to official figures. Close to 26,000 people signed on — three times the number who joined in the previous quarter ... The latest numbers are a big turnaround from the first quarterly report of the scheme's "transition" phase, when only 7,400 new participants were enrolled. That was well below initial targets ...

Pace of NDIS rollout a cause for concern (audio 8m)
Heidi Pett, RN Breakfast (ABC Radio), 17 February 2017
This week, the Coalition attempted to lash funding for the National Disability Insurance Scheme to the sinking ship of their welfare omnibus bill.

But, as the political bickering continues, those in the sector are worried the scheme itself is taking on water. Disability advocates say the pace of the national rollout has led to inconsistencies and a lack of oversight, leaving many participants worse off ...

Mornings, 702 ABC Radio, 21 February 2017 (audio file 17m 18s)
The current and former Disability Discrimination Commissioners, Alastair McEwin and Graeme Innes, joined Wendy Harmer to vent their frustration following last night's Q and A discussion on the NDIS funding. Alastair wants politicians to stop and think what it would be like to not be able to get out of your house on a daily basis. He and Graeme Innes want NDIS funding to be viewed as an investment in getting people with disabilities out working, socialising and contributing to the community '''

NDIA recruits Cate Blanchett to voice new avatar

Byron Connolly, CIO, 22 February 2017
The National Disability Insurance Agency (NDIA) has recruited Oscar winning actress Cate Blanchett as the voice of Nadia, an online virtual assistant who speaks, writes and chats online and answers common questions about the national disability insurance scheme ...


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

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

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

Wednesday, 29 March 2017

Regional workshops for families, on inclusive education

One of the Kids
4 April 2017 - Bathurst
5 April 2017 - Lithgow
6 April 2017 - Katoomba
7 April 2017 - Emu Plains
Family Advocacy
Come along to learn about inclusive education, hear stories of success from the regular classroom, and think about how inclusion can work for your child!

Inclusive Research Network is looking for new members

The Centre for Disability Studies at Sydney University is calling for new members of the Inclusive Research Network:
Inclusive Research is about people with intellectual disabilities doing research, not having research done on them. 
Our motto is “Nothing about us without us.”
Are you a person with an intellectual disability who has ideas or thoughts about what’s important? 
We are the CDS Inclusive Research Network
We are looking for new members, and we meet once a month at CDS, Camperdown.

Tuesday, 28 March 2017

The Australian Federation of Disability Organisations joins calls for Royal Commission into abuse of people with disability

Following last night's harrowing episode of Four Corners, with its expose of abuse of people in care, Down Syndrome Australia once again reiterates its strong support for a Royal Commission into the abuse of people with disabilities.
  • The 4 Corners episode Fighting the System is available on ABC iView until 26 April 2017

AFDO media release 28 March 2017:

The Australian Federation of Disability Organisations (AFDO) today joined calls from across the disability sector for a Royal Commission into the violence, abuse and neglect experienced by Australians with disability.

Last night’s Four Corners investigative report exposed harrowing tales of the abuse and assault of people with disability living in specialist disability accommodation. The episode highlighted not only individual cases of violence and assault but also the woefully inadequate system responses when incidents came to light.

The Chief Executive Officer of AFDO, Mr Ross Joyce, said that while last night’s stories were heartbreaking, they were sadly not shocking for anyone familiar with the disability system.

Disability Groups Call For Royal Commission Into Violence Against People With Disability

  • The 4 Corners episode Fighting the System is available on ABC iView until 26 April 2017

Disabled People's Organisations Australia, 27 March 2017

Tonight’s ABC Four Corners report, Fighting the System exposed more evidence of the appalling levels of violence and abuse against people with disability in Australia. This is only the tip of the iceberg. In light of the graphic and disturbing cases revealed this evening, Disabled People’s Organisations Australia (DPO Australia), calls on the Federal Government to reconsider its recent refusal to conduct a Royal Commission into violence and abuse of people with disability.

“Tonight, more evidence has come to light that supports the case for a Royal Commission. It is only a Royal Commission that has the weight, the investigative powers, the time and resources to open the doors to the many ‘closed’ institutions and residential environments, and expose Australia’s shameful secret,” said Therese Sands, Director, DPO Australia.

“People with disability are routinely denied access to justice, both at a civil and criminal level because of law, policy and practice barriers. A Royal Commission would give space and recognition to people with disability to tell their story, to be believed, and would enable some measure of accountability and justice,” said Ms Sands.

The 2015 Senate Committee Inquiry into violence and abuse against people with disability in institutional and residential settings found that violence and abuse was prolific and hidden. The central recommendation of the committee was the establishment of a Royal Commission.

The Federal Government ruled out a Royal Commission in its response to the Senate Inquiry earlier this month. The Government noted that it was addressing violence and abuse against people with disability by establishing the Quality and Safeguarding Framework for the National Disability Insurance Scheme (NDIS).

Monday, 27 March 2017

Scrapheap Adventure Ride 2017 - Tingha, NSW

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.

In just six years the event has raised nearly $500,000 for Down Syndrome NSW.
Riders begin their journey at home or wherever they like but arrive at the same destination.

This year that destination is Green Valley Farm, Tingha, in North Western NSW, where all ‘Scrappers’ plus family and friends will meet for a weekend of fun and entertainment at a campsite from September 29 to October 1.

Our target for 2017 is 100 riders raising $100,000 for Down Syndrome NSW. So what are you waiting for? Click here to join the 2017 Scrapheap Adventure Ride.

If you’re not a rider, you can support the Scrapheap Adventure Ride and Down Syndrome NSW by sponsoring a rider or just donating to the cause.

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 

    NDIS Information Session
    11:00 am – 12:30 pm Monday 3 April 2017
    'The Entertainment Grounds' (previously known as Gosford Race Club)
    4 Racecourse Road, West Gosford, NSW 2250
    The National Disability Insurance Scheme has been available in the NSW Central Coast region since July 2016. More than 7,600 people from the region are expected to join the NDIS by June 2019. 
    We are hosting an information session in partnership with the Member for Robertson, Lucy Wicks MP for people with disability, their families and carers, and community members in Gosford.

    Is there such a thing as a good group home?
    9:30 am – 3:00 pm Friday 28 April 2017
    Living with Disability Research Centre
    What does the research tell us? What action do we need to take to improve the quality?
    What are the alternatives?
    Who should attend? 
    Those in a leadership role of accommodation support services including CEOs and senior managers; Families of people with intellectual disability; Service coordinators/case workers; Funders; Professional staff who support individuals living in group homes
    Presented by Prof Christine Bigby 

    Sunday, 26 March 2017

    4 Corners investigates supported accommodation

    This confronting episode of 4 Corners screens tomorrow night:

    Fighting the System, 4 Corners, ABC TV 1
    8.30 pm Monday 27 March 
    "I brought him into this world, and I love him. I do all I can to help him. I'm 88 soon. I'm still battling." Jean, mother. 
    On Monday night Four Corners exposes what happens behind closed doors in some taxpayer funded group homes for the disabled and talks to the mothers and carers taking on the system ...
    Fighting the System, reported by Linton Besser and presented by Sarah Ferguson
    is replayed on Tuesday 28th March at 10.00am and Wednesday 29th at 11pm. It can also be seen on ABC News 24 on Saturday at 8.00pm AEST, ABC iview and at

    Friday, 24 March 2017

    Weekend reading and viewing: 25 - 26 March 2017

    World Down Syndrome Day 2017 Conference at the UN, New York
    You can see and read all the presentations at the conference here
    You can go directly to an illustrated transcript of the presentation given by Olivia Hargroder from Brisbane here.
    World Down Syndrome Day Awards - individuals with Down syndrome
    Down Syndrome International, 14 March 2017
    2 individuals with Down syndrome receive an award for outstanding self-advocacy:  
    Emmanuel Bishop (United States) – Is an international self-advocate presenting at many conferences across the world. His self advocacy presentations are aimed at parents and professionals with the goal of improving quality of life for people with Down syndrome by raising hope and awareness of the abilities in all persons who have Down syndrome and defending the inherent dignity of all persons who have Down syndrome as valued members of society. 
    Saylee Agavane (India) – Saylee starting learning Kathak (one of the eight forms of Indian Classical dances) at the age of 9.She attended all the batches from preliminary to advanced, in an inclusive environment. Saylee has won numerous awards during her 17 years of Classical Kathak Dance.

    A new World Down Syndrome Day video shrewdly takes on a problematic euphemism ... a World Down Syndrome Day viral video I can get behind ... 

    David M Perry, The Establishment

    21 March 2017

    ... I want to hear the voices of people with Down Syndrome, they are amazing voices and need only the microphone. 
    The microphone. A spot on centre stage. And a world that will look and listen and learn ...
    Dave Hingsburger, Of Battered Aspect
    21 March 2017

    Life according to Maria Jose Paiz Arias, a 19-year-old Panamanian woman with big ambitions - and Down syndrome ...  'The cure to people's attitude towards me is getting to know me better. Over time, I can teach these people who I am and show them that I'm a good person' ...
    Loes Witschge, Aljazeera 
    21 March 2017

    You Can't Ask That!
    Have you seen the trailer for the second series of this popular ABC TV series? Several people with Down syndrome will appear in this series:
    You Can't Ask That returns for a second season of life-affirming, insightful, hilarious and refreshingly inappropriate television. 
    ... You Can't Ask That asks groups of misunderstood, judged or marginalised Australians the awkward, inappropriate or uncomfortable questions you've always wanted to know the answers to, but have always been too afraid to ask.
    You Can't Ask That Series 2 starts on ABC TV 1, 9.30 pm Thursday 6 April 2017 and will be on iView (Episode 1, Blind People, is available now).

    Voice: March 2017

    Down Syndrome Australia publishes the print-only national journal Voice three times a year.

    Subscription to the national journal is a membership benefit, and is included in the membership fees of Down Syndrome New South Wales, Down Syndrome VictoriaDown Syndrome Western Australia, Down Syndrome South AustraliaDown Syndrome Tasmania and Down Syndrome Association Northern Territory.

    Enquire about membership/subscription with your local Sate Down syndrome organisation (links above).

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

    In the March 2017 issue released this week:
    • Functional mathematics
    • My Time
    • The NDIS can make dreams come true
    • Stop saying that!
    • Discrimination travels in disguise
    • The heart of the matter
    • Last word: a str is born
    • Last word: just being Dad
    Selected articles online
    After each issue is released, selected articles are featured on the DSA website, giving you access to them wherever you are, and making it easier to share those articles with others.

    Thursday, 23 March 2017

    NSW parliamentary forum on health discrimination

    Call to action from NSW Council for Intellectual Disability:
     Help us strike while the iron is hot to keep disability health in the political spotlight. 
    Thanks to your support we have been able to organise a Parliamentary Forum, which will focus on the very high rates of preventable deaths for people with intellectual disability. The forum will be held on Friday 31 March at 12 noon in Parliament House.
    The Minister for Disability Services, Hon Raymond Williams will address the forum, as will the Shadow Ministers for Health and Disability.
    Your local MP has received an invitation, but we need your voice to ensure they attend the event. The more politicians we have there, the more pressure there will be on the government to act. 
    The event is little more than a week away, so we need you to phone or email them right now, to lock it into their calendar. 

    Wednesday, 22 March 2017

    Sydney workshops on Microboards

    1 April 2017 - West Ryde (Sydney) 
    Family Mentoring Session
    2 April 2017 - West Ryde (Sydney) 
    Developmental Disability WA
    A microboard is a small group of people, typically committed family and friends who form an incorporated association and work with the person to help them plan and achieve their goals for a good life. 
    Depending on a person’s particular needs, a Microboard’s role can include assisting with coordinating support services, finding and keeping employment and facilitating friendships. 
    This workshop will introduce you to what a microboard is and how they can be set up and run. 
    • The orgnisers advise that NDIS participants might be able to use NDIS funds to attend these workshops. 

    World Down Syndrome Day media

    It is still World Down Syndrome Day in the western hemisphere ... here are some more examples of media attention to the 2017 campaign:

    The Morning Show, 21 March 2017
    UK photographer Oliver Hellowell aims to demonstrate that 
    Down syndrome is something to be celebrated and valued, 
    through his poster created for World Down Syndrome Day 2017

    World Down Syndrome Day 2017 - #MyVoiceMyCommunity
    Down Syndrome International presents a global video journey promoting inclusion of people with Down syndrome. "My Voice, My Community" features videos of people with Down syndrome, among their friends and peers. They talk about how it is important for their voices to be heard, as equal citizens of their countries and they encourage their governments to listen to their concerns.

    This is Us - Down Syndrome Ireland, 2017

    Tuesday, 21 March 2017

    Today is World Down Syndrome Day 2017

    World Down Syndrome Day, the 21 March, is an international awareness day to promote a better understanding of Down syndrome, the vital and active role that people with Down syndrome play in our communities and the actions needed to be taken to ensure that people with Down syndrome are able to realise their fundamental human rights. Down Syndrome Australia welcomes the opportunity to be part of this global celebration of people with Down syndrome and effort to combat stigma and misunderstanding about Down syndrome.

    This year the theme for World Down Syndrome Day is “My Voice, My Community.” As part of our celebrations for this day, Down Syndrome Australia with the support of the Parliamentary Friends of Down Syndrome are hosting a World Down Syndrome Day morning tea at Parliament House on 22 March. This annual event is an opportunity to bring together politicians, key stakeholders and people with Down syndrome and their families to celebrate this important day.

    This year, we are pleased that we have two people with Down syndrome, our South Australian Member Ambassadors, James White and Zoe Kyriazopoulos who will be speaking at the event. We will also be joined by Disability Discrimination Commissioner Alastair McEwin who will talk about the importance of community understanding of intellectual disabilities and the barriers to inclusion faced by people with Down Syndrome.

    This event will also be an opportunity to showcase the latest international awareness film produced by CoorDown. This film uses humour to address serious issues around the use of the terminology “special needs” and highlights that the fundamental needs of people with Down syndrome are the same as everyone else- the need for education, employment, access to health care, and the community.

    Down Syndrome Australia CEO, Dr Ellen Skladzien said “It is vitally important that we address the stigma and lack of community understanding about Down syndrome. A recent survey we conducted of more than 800 families of people with Down syndrome found that approximately a third of people with Down syndrome and their families had been discouraged from taking part in everyday community activities or education because of their disability.”

    World Down Syndrome Day is an opportunity to dispel the myths that surround intellectual disability and to highlight the active potential of people with Down syndrome. As part of our countdown to World Down Syndrome Day, Down Syndrome Australia has profiled 21 people over 21 days to highlight the many different ways that people with Down syndrome are involved in their community. These stories can be found here. 

    World Down Syndrome Day will be celebrated around the world, and it will be highlighted in media everywhere. Here a few early local and international examples:
    March 21 is World Down Syndrome Awareness Day, Krystal Sellars, Cessnock Advertiser, 20 March 2017
    Dear Community, NZ DSA, 21 March 2017 (video, 2m 22s)
    I Cannot Do This Alone: Why Allies Matter to the Down Syndrome CommunityMaxine Sinda Napal, Huffington Post, 18 March 2017

    #World Down Syndrome Day 2017 – Day 21

    This year Down Syndrome Australia is celebrating #MyVoiceMyCommunity with the international Down syndrome community. Join us as we count down to  21 March with 21 stories of inclusion and personal success.

    ... nine years on, I wish I could go back in time and talk to the terrified mummy I was. I would softly tell myself – it is going to be okay. There is nothing to be scared of. Your daughter will develop her milestones, she will talk and sing, she will have friends, she will love swimming, she will go to mainstream school and be involved in extra-curricular activities, she will have her own personality and talents, she will have a vivid imagination, she will learn independent life skills, and she will bring much joy to your family and others around you. You will love her ... read the whole story here.
    Today is World Down Syndrome Day. We hope you have enjoyed the stories and photos we have been sharing as much as we have. Visit this page to see and share all 21 stories.

    Monday, 20 March 2017

    Want to join the #notspecialneeds campaign for World Down Syndrome Day 2017?

    The CoorDown Italy collaborative video 'Not Special Needs' released late last week, has been enthusiastically received around the world, especially for its use of humour to make the point about universal human needs.

    Do you have a favourite scene? The guy swaggering down the supermarket aisle in a full suit of armour is popular!

    You can join in the #notspecialneeds social media campaign with Down Syndrome Australia, one of the international collaborators:
    Write your poster, take a photo of you holding your poster and send it to the DSA Facebook page as a message to share on the Down syndrome Australia website, Facebook and Twitter. 
    Here is what you put on your poster:
    "I need ..........
    Is that special? 
    Visit the DSA Facebook page to see the posters already shared.

    #notspecilaneeds ! World Down Syndrome Day video's important message
    Starting with Julius
    The 2017 World Down Syndrome Day (WDSD17) video campaign created by Publicis NY for CoorDown, Italy and with the participation of other Down syndrome organisations, including Down Syndrome Australia, is a powerful example of how inclusive and authentic representation of people with disability in mainstream media can help change cultural attitudes and assumptions to disability – even subconscious attitudes predicated on the well-meaning euphemism “special needs” ...

    Maeriah Nicholl, Living with a Little Moxie, 17 March 2017
    #NotSpecialNeeds just came out in time for World Down Syndrome Day and it is my favorite short of 2017.

    ... Main points from the #NotSpecialNeeds campaign are:
    • People with Down syndrome have human needs; not special
    • Accommodation for disability isn’t a “special need”
    • The words “special needs” segregates, excludes and stigmatizes; it’s not by and for people with disabilities (who largely consider “special needs” to be patronizing and condescending) ...

    #World Down Syndrome Day 2017 – Day 20

    This year Down Syndrome Australia is celebrating #MyVoiceMyCommunity with the international Down syndrome community. Join us as we count down to  21 March with 21 stories of inclusion and personal success.

    This is Sean, our eight year old son. He is the youngest of our five children and has Down syndrome. He was diagnosed with Down syndrome when I was 20 weeks pregnant and I was scared and anxious about what the future would hold. But since the moment Sean was born he has brought such joy to our lives and I wouldn’t have it any other way ... read the whole story here.

    Sunday, 19 March 2017

    #World Down Syndrome Day 2017 – Day 19

    This year Down Syndrome Australia is celebrating #MyVoiceMyCommunity with the international Down syndrome community. Join us as we count down to  21 March with 21 stories of inclusion and personal success.

    ‘A Night to Remember Gala Ball’ is an annual event for 150 young people with disability. They enjoy a night where they receive a three course meal, soft drinks, live band and a photo booth. 
    The ball is an opportunity to catch up with friends, make new friends, dance and socialise in a fun environment supported by Down Syndrome South Australia staff and volunteers.

    This photo is of Ashlea enjoying herself at the ball.

    Saturday, 18 March 2017

    #World Down Syndrome Day 2017 – Day 18

    This year Down Syndrome Australia is celebrating #MyVoiceMyCommunity with the international Down syndrome community. Join us as we count down to  21 March with 21 stories of inclusion and personal success.

    My name is Moya. I’m in grade three, going into grade four.

    Last year we did a project with our fantastic resident writer, Caylie Jeffery ... It was so much fun coming up with ideas for our stories. I chose my favourite story, the one I dream about every night, ‘My Holiday Home’ ...
    read the whole story here.

    Friday, 17 March 2017

    Weekend reading and viewing: 18 - 19 March 2017

    CoorDown, Italy, Down Syndrome International, Down Syndrome Australia, Down's Syndrome Assocation (UK)Jérôme Lejeune Foundation​ (France), 16 March 2017

    We’re proud to present Not Special Needs, the new CoorDown campaign for World Down Syndrome Day, 21 March. The video will be presented at the UN conference on 21 March.
    What “special needs” does a person with Down syndrome really have? None.
    People with Down syndrome, like everyone else, have basic human needs – to eat, drink, breathe and sleep – to be nurtured, loved, educated and sheltered – to move, communicate, contribute and work – and to share, love and live. 
    Sure, people with Down syndrome may need extra assistance. Sometimes they even need significant assistance, and adjustments, to meet a particular need. But that doesn't make that common human need “special” ... see the video, read more on the campaign, the thinking behind it, and suggestions for taking an active part.
    Visit the Not Special Needs website, and CoorDown Onlus on Instagram, and you will see some familiar Aussie faces!

    You can also see and share  the video via You Tube:

    'People make assumptions based on the way people look and act and do not always see the person behind the condition.' 
    ... 'Just because a person has a disability does not mean that they do not have dreams and hopes for the future,” (Ceridwen) Hughes said. “Many people with disabilities want to work and be valuable members of the community, and often they just need that opportunity' ...
    4 March 2017

    I’ve never been too fussed either way and have used ‘Down syndrome’ ... it’s the term everyone knows. When I write I don’t particularly want to preach to the choir. It’s no great achievement convincing other parents that our kids are pretty cool—we know that already. I try to reach people who know very little about Down syndrome and may have never met anyone with the condition. I want to show people how much Down syndrome has changed so they may be more understanding and willing to accept Wade–and others with the condition–into the schools they attend or the workplaces they share or any other paths they may cross in the future. It’s a bit hard to change people’s hearts and minds about a condition they’ve never heard of or if they think I am talking about a completely different condition all together ... But I think I’ve changed my mind ...
    Leticia Keighley, Embracing Wade
    13 March 2017

    The University of Kentucky Human Development Institute (HDI) is expanding its photo library and creating an important resource to improve the broad representation of people with disabilities from diverse backgrounds. 
    ... To create this library of resources, photographers Justin and Andy Meredith will also contribute to this project by donating their time to engage in photo shoots coordinated with the Massachusetts Down Syndrome Congress, the Down Syndrome Association of Central Kentucky and other HDI programs with connections to individuals with disabilities who are interested in participating in the photo shoot ...

    This will also be the first time an individual with Down syndrome will participate as one of the principal photographers in this kind of effort. His involvement will also be an important vision of future potential for the many families participating in this photo shoot whose young children have Down syndrome and other disabilities” ... 
    Whitney Harder, UKNow 
    13 March 2017

    Down Syndrome International, 14 March 2017
    Ahead of World Down Syndrome Day on Tuesday 21 March, Down Syndrome International (DSi) is delighted to announce the recipients of the 2017 World Down Syndrome Day Awards.

    The World Down Syndrome Day Awards are presented to individuals or organisations whose voluntary, professional or scientific activities have strengthened and enriched the lives of people with Down syndrome, or contributed to scientific advancement related to Down syndrome.

    Two awards were made to Australians:

    For outstanding contribution towards scientific advancement related to Down syndrome:
    Dr Pat Gunn (Australia) – Dr Gunn is now retired and in her eighties but she dedicated her entire working life to researching development in children with Down syndrome. Her research explored the psychological and environmental factors influencing how pre-school and school-aged children with Down syndrome acquire social and academic skills. The potential practical implications of this research were always at the forefront of her thinking and she was one of the first researchers in the field to look at development in Down syndrome through the lens of the wider family.
    For outstanding contribution towards scientific advancement related to Down syndrome:
    The University of Queensland Down Syndrome Research Program (Australia) - This award is for the Down Syndrome Research Program at The University of Queensland – the researchers, participants with Down syndrome, families and benefactors. The program has included a number of aspects; however, the centre piece is a longitudinal study which began with babies and their families in 1978. In 2018, the longitudinal study will celebrate 40 years of continuous research with these individuals and their families.
    Read the full list of award winners and their profiles here.

    All recipients are invited to a formal presentation of World Down Syndrome Day Awards taking place at the 13th World Down Syndrome Congress (WDSC) in Scotland, United Kingdom in July 2018.

    #World Down Syndrome Day 2017 – Day 17

    This year Down Syndrome Australia is celebrating #MyVoiceMyCommunity with the international Down syndrome community. Join us as we count down to  21 March with 21 stories of inclusion and personal success.

    My name is Peita and I am 35 years old. I have been in the Down Syndrome NSW Up! Club since it started in 2001. It has been a great social outlet for many young people with Down syndrome. Over the years we have had many wonderful leaders who have organised outings for us such as movies, camps, dinners at the pub and cruise holidays. Next year our leader Flavio hopes to take us to the Melbourne Cup. How exciting that would be! 
    Apart from the Up! Club I am involved in two local groups. I am also employed full time and leave home at 7.30 am and return home at 6.00 pm, so life is busy. I have been at my job for 16 years and enjoy it very much. I work with a wonderful group of people and am supported by Jobsupport NSW, so between my work and my social life with family and friends I am very busy ... you can also read Peita's story here.

    Thursday, 16 March 2017

    Apply for, or register for, BSWAT payment by 30 April 2017

    BSWAT Payment Scheme
    Dept Social Services, 27 February 2017

    Thousands of people with intellectual impairment are entitled to a one-off payment through the Australian Government’s BSWAT Payment Scheme. 
    Between 2004 and 2014, the Business Services Wage Assessment Tool (BSWAT) was used to assess the wages of many supported employees of Australian Disability Enterprises (ADEs). 
    In 2012, the Federal Court determined that the BSWAT indirectly discriminated against two ADE employees with an intellectual disability. 
    The Australian Government has set up the BSWAT Payment Scheme ... read the full page of information and links here

    * If a person is not ready to apply, they can register for the scheme by 30 April 2017. They then have until 30 November 2017 to apply for a payment. It's quick and easy to register for the scheme using this online form. Or, people can call 1800 799 515 or send an email.

    BSWAT Scheme Newsletter, Issue #1, 9 March 2017

    Not everyone will receive payments the size of this one, but it is worth applying for a payment if you meet the criteria:

    Jessica Black, The Courier, 11 March 2017
    An intellectually disabled Grampians man has been compensated by the Commonwealth after being paid as little as $2.52 an hour in government funded workshops.

    The man, who cannot be named for legal reasons, received $26,000 in back pay after he was paid between $2.52 and $3.23 an hour at Australian Disability Enterprises (ADE), lawyer Kairsty Wilson said ...

    #World Down Syndrome Day 2017 – Day 16

    This year Down Syndrome Australia is celebrating #MyVoiceMyCommunity with the international Down syndrome community. Join us as we count down to  21 March with 21 stories of inclusion and personal success.

    Kingsley is a fun, kind and loving boy who gets along with everyone. He was lucky enough to meet the original Wiggles, who he has been the biggest fan of since he was a baby, on their last ever tour. More recently he has become a huge Minions fan! 
    Kingsley has speech dyspraxia which he sees a speech pathologist regularly to work on, as he really struggles with verbal communication. The fact that the Minions don't say many actual words is one of the biggest reasons Kingsley is drawn to them and relates to them so much – that and his love of mischief! ... read the whole story here.

    Wednesday, 15 March 2017

    #World Down Syndrome Day 2017 – Day 15

    This year Down Syndrome Australia is celebrating #MyVoiceMyCommunity with the international Down syndrome community. Join us as we count down to  21 March with 21 stories of inclusion and personal success.

    When Sam was born, 18 years ago to be exact, I felt as if it was a complete disaster. That my life as I knew it had ended and it was going to be utter misery from now on. My family are all in England and I only knew one person here who had a child with a disability. I felt incredibly alone. 
    ... On the weekend we celebrated Sam’s 18th with a party of over 80 people. I was able to tell our friends and family that, yes, when Sam was born I was devastated. I wish that I had known then what I know now – happiness in spades. And I must admit there were lots of tears, surprise and laughter when I spoke about our journey with Sam which all started with him arriving in the back seat of the car! ... read the whole story here.

    Tuesday, 14 March 2017

    Special Olympics Winter Games 2017, Austria: Meet Team Australia

    Good luck to all the athletes, including those with Down syndrome,  representing Australia at the Special Olympics Winter Games in Austria over the next two weeks - information from the Special Olympics Australia website:
    The Special Olympics World Winter Games will be held in Austria from 14-25 March 2017 where 3,000 athletes with an intellectual disability from 117 nations will compete across nine wintersports disciplines: Alpine skiing, figure skating, floor ball, floor hockey, Nordic skiing, snow shoeing, snowboarding, speed skating and stick shooting, with floor hockey and floor ball having the most participants.
    Australia will be represented by 12 athletes who will compete across two disciplines: Alpine skiing and snowboarding. They will be supported by five volunteer officials and cheered on by a small group of families and supporters at the Games and many more at home via social media. 
    This will be only the second-time that Australian athletes have competed in snowsports at a World Winter Games. 
    Meet Team Australia
    You can send a message of support here
    Quick facts and links from the team Australia Infographic
    Team Australia departs for 2017 Winter Games -  Stephanie Brantz interviews Team Australia as they prepare to depart for Austria, ESPN Australia/New Zealand, 13 March 2017

    #World Down Syndrome Day 2017 – Day 14

    This year Down Syndrome Australia is celebrating #MyVoiceMyCommunity with the international Down syndrome community. Join us as we count down to  21 March with 21 stories of inclusion and personal success.

    Ruth is a 20 year old woman with Down syndrome who has always enjoyed spending time with children. For the past year she has been working part-time at a child care centre in Queensland. She loves playing with the children but also keeping the centre clean and tidy. One of her favourite jobs is changing nappies. Ruth is in open-employment and paid the award-rate ... read the whole story here.

    Monday, 13 March 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 

      10am - 12 noon, 1 April 2017 - Marrickville
      Siblings Australia
      All sibling relationships can be complex and ever-changing, but when a brother or sister has a disability it can be more complicated Would you like to meet other adult siblings to share experiences and support? Siblings Australia is establishing a local peer support network and we welcome ALL adult sibs no matter what role, if any, that you play.

      9:30 am - 4:30 pm 19 April 2017 - Sydney
      Centre for Disability Studies, Sydney University
      Mental health problems occur more frequently in people with developmental disability than in others in the community. These conditions can significantly affect the quality of life and general well-being of the individual, family members and / or other carers.
      This workshop aims to build the capacity of existing staff to provide psychotherapy/counselling/support to people who experience mild to moderate intellectual disability and who are also experiencing mild to moderate anxiety, and/ or depression. 
      Presented by Clinical Prof. Vivienne Riches (clinical psychologist) and Laura Hogan (occupational therapist)

      Pushing the boundaries Australasian Society for Intellectual Disability conference 2017
      8 - 10 November 2017 - Hobart, Tasmania
      The theme 'Pushing the Boundaries' reflects the major challenges facing all communities who desire to realise the goals of the UN Convention on the Rights of Persons with Disabilities. In Australasia, it encompasses the issues arising from new approaches to service provision such as increased self-direction, choice and control. ASID’s focus is research to practice – the dialogue between researchers, practitioners, service providers, governments, families and people with intellectual disability which has the goal of finding better ways to support inclusion for individuals and to change systems.