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) 
and
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? 
#notspecialneeds"
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


Note:
* 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)

    www.facebook.com/hccexpos

    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.

    #World Down Syndrome Day 2017 – Day 13

    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.

    Andy is 21 years old and lives with his family. With the support of NDIS funding he has a very fulfilling life. His week is made up of various activities that he chooses himself and negotiates with his support workers. 
    Andy’s family has set up a small business making and selling preserves at local farmer’s markets. His role includes counting and setting up the jars for sterilising, packing boxes for markets and helping pack and unpack the car and market stall.
    His primary passion in life is basketball and his favourite job is volunteering at his local basketball association every Wednesday afternoon ... read the whole story here.

    Sunday, 12 March 2017

    #World Down Syndrome Day 2017 – Day 12

    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.

    Josie is a 19 year old artist from Sydney. She left school at the end of 2013 to begin a Certificate in Basic Vocational Skills through TAFE NSW and take part in other courses through a local community college. 
    Looking to fill up some extra hours, Josie also enrolled in a mainstream painting and drawing class at a local regional art gallery. She was hesitant about taking on this class as she hadn’t been very interested in painting or drawing in the past. When her tutor gave her a photo of a landscape to draw, she created a very good reproduction. Josie’s untapped talent was uncovered much to everyone’s surprise and delight ... read the whole story here.

    Saturday, 11 March 2017

    #World Down Syndrome Day 2017 – Day 11

    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.

    Michael is Chair of NSW Council for Intellectual Disability, on the NDIA Intellectual Disability Reference Group, a member of an Australia wide advocacy group OUR VOICE, and has recently been appointed the University of New South Wales Ambassador for Healthy Aging. 
    He is a staunch self-advocate, wonderfully articulate, an excellent role model and an ambassador for giving people with Down syndrome a voice.My work as a self-advocate

    I am person with Down syndrome and a self-advocate. When I advocate for myself I am also advocating for others. When I am up there delivering my talk, I take a minute for a quick reflection – I think “I am not just here for myself” and then I go in to my talk ... read the whole story here.

    Friday, 10 March 2017

    Weekend reading and viewing: 11 - 12 March 2017


    Can you imagine any person being told their life is a waste? That they won’t contribute to society? That they shouldn’t even be given the CHANCE to make their mark on the world? People with Down syndrome face this discrimination every day. As a part of our mission to improve research and medical care for people with Down syndrome, it is clear to us that our work must be framed in the context of human and civil rights.
    The moving speech of our Quincy Jones Exceptional Advocacy Award Winner, Frank Stephens, underscores this sentiment and brought 1,200 attendees to their feet at the Be Beautiful Be Yourself Fashion Show. He is an author, actor, and exceptional advocate ... 
    Global Down Syndrome Foundation
    8 March 2017 

    People with Down syndrome have become poster children for a new generation of genetic screening tests conquering the world. In an interview about these tests, professor emeritus human genetics, former member Health council and UNESCO bio-ethics committee Dr. Galjaard, says Down syndrome should disappear ... Why?
    Renate Lindeman, Huffington Post
    16 February 2017

    There is a camp that holds vehemently to their right to say whatever the hell they want. And I’m with them.

    As a former student of journalism, as an American, as a citizen of the world with an interest in truth and genuine dialogue, I do believe that you should be able to say whatever the hell you want. But what I also want the people in that camp to do is to take responsibility. 
    Yes, you can say whatever you want. But, yes, there will be consequences ... 
    21 March 2014

    Our neighbourhoods need to be safe and inclusive places – safe for even the most vulnerable in our community. This includes the 668,100 Australians living with intellectual disability ... The main issue is not the type of accommodation, but its location. The neighbourhood, its design, and the community of people who live there are all significant factors for supporting safety and inclusion ...
    Cate MacMillan and Nicholas Stevens, The Conversation
    6 March 2017

    Two best friends are both disabled – but one is called “high-functioning,” while the other is called “low-functioning.” 
    So what’s the difference – and what are these labels often missing? Check out this comic to find out. 
    This shows how being labeled as high- or low-functioning influences the oppressive ways that people are treated. And it makes a crucial point about who these distinctions really serve in the end. 
    4 March 2017

    #World Down Syndrome Day 2017 – Day 10

    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.

    Although we have been through so many challenges with Jacob, our son with Down syndrome, he is always the light at the end of our tunnel. He is always the smile that keeps us singing through the hard times.

    By the time he was one year old he had fought through life threatening infections, open heart surgery and even a dangerous medication overdose. When he was two and a half he learned to walk in the hospital corridors while his baby sister was being born ...  read the whole story here.

    Thursday, 9 March 2017

    Queensland teen headed to speak at UN


    #MyVoiceMyCommunity -  6th World Down Syndrome Day Conference, New York
    Location: Trusteeship Council Chamber, United Nations Headquarters, New York, USA 
    Date: Tuesday 21 March 2017 - 10am-1pm and 3pm-6pm 
    Theme: #MyVoiceMyCommunity - Enabling people with Down syndrome to speak up, be heard and influence government policy and action, to be fully included in the community 

    A Redcliffe (Brisbane) teenager is on her way to New York after being invited to speak at the United Nations. Olivia Hargroder has Down syndrome and aims to encourage the global community to deliver better services for people like her ...
    Rhea Abraham, 7News Sydney, 7 March 2017
    • Down Syndrome Queensland commented on Facebook: 'We are immensely proud of Olivia and will follow her journey! We know she will be a wonderful speaker and advocate'.
    • The first link in this post is to a 2016 article about Olivia.

    #MyVoiceMyCommunity - Geneva eventDown Syndrome International is delighted to be organising an event at the United Nations, Geneva, Switzerland for the first time in 2017. 

    NDCO Webinar - Disability Discrimination Commissioner

    The National Disability Coordination Officer Program (NDCO) is hosting a webinar with Alastair McEwin, Australia's Disability Discrimination Commissioner. 

    This consultative webinar will discuss:
    • Changes needed to see the rights of people with Disability better protected, 
    • What is already being done well that can be built on to achieve greater systemic change, 
    • What you would like to see the Disability Discrimination Commissioner do to most effectively advance the rights of people with Disability. 
    1:00 pm - 2:00 pm AEDT, Monday, 13 March 2017
    This webinar will have live AUSLAN translation and live captions. For other accessibility requirements please contact us at ndco@stepsgroup.com.au

    #World Down Syndrome Day 2017 – Day 9

    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.
    Jazmyn is 13 years old and loves anything to do with hairdressing and music. She has three siblings – her Brother Brodee, 16, her brother Jamieson, 10, and sister Gabrielle, 6. Her parents are Paul and Tina. 
    Jazmyn took part in the ABC Radio Faces of Toowoomba Campaign. This is a photo of her at the modelling shoot.

    Wednesday, 8 March 2017

    Office of the Children's Guardian: seeking children with disabilities for short film project, Sydney

    Arts Access Australia posted this call for children with disabilities to appear in some training films, on Facebook yesterday:

    We have been approached by Office of the Children's Guardian about wanting to hire some kids with disability to act in a short film production they are working on as part of a project. This is a PAID JOB and they need our help are on quite a tight time-frame so would appreciate you sharing this info far and wide if possible ...
    The project involves the development of training to build capacity for disability providers on how to become a Child Safe Organisation. The training will be delivered across NSW in mid 2017. 
    To support the face to face training they are developing 4 short films of situations within the workplace which represent areas of risk. 
    Some of the actors required for the training videos will need to be children with disability and at this stage it is likely that a child around 6 years old and another child from 10-14 years old will be needed. All scenarios will be set within an inclusive school environment and if possible it would be great if they could have another 2-3 children as extras. 
    They are hoping to film in the week beginning 27 March at La Perouse Public School for around 6 days, and may only need the children for 1-2 of those days. 
    Caryn Millward is the Project Officer and can be contacted on 02 9286 7264 if you would like to discuss the details further.

    #World Down Syndrome Day 2017 – Day 8

    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.

    Flynn started day care when he was seven months old. He is now 16 months. When he started we said we wanted to have him included in everything and treated just like the other children. His day care has gone above and beyond our expectations to include him in all their activities, giving him some extra help when he needed it. 
    He’s a very inquisitive boy who thrives on interaction with his friends and is already developing some beautiful friendships ... read the whole story here.