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 info@downsyndrome.org.au.

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

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 info@downsyndrome.org.au

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 Voice

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 (info@downsyndrome.org.au) before 15 June.

Down Syndrome Australia Quarterly Newsletter, June 2017

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.”

• Action on Abuse of People with Disability, Australian Federation of Disabiiity Organisations, 26 May 2017

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.

Down Syndrome Australia welcomes the Disability Support Pension Review Recommendations

Down Syndrome Australia

11 May 2017

Down Syndrome Australia welcomes the final report of the Joint Committee of Public Accounts and Audit Inquiry into Qualifying for the Disability Support Pension which has been tabled today in the House of Representatives.

In recent years, people with Down syndrome have been subjected to unnecessary, time consuming and stressful medical reviews to prove that they continue to be eligible for the DSP. Down Syndrome Australia has been strongly advocating for a change to the review process for the Disability Support Pension.

In the report tabled today, the Joint Committee of Public Accounts and Audit has recommended 

“the Department of Social Services review the List 1 of conditions that provide eligibility for manifest grants of the Disability Support Pension. The Committee recommends particular attention is given to the merits of including chromosomal disorders, such as Down syndrome, on List 1.”

Down Syndrome Australia CEO, Ellen Skladzien said “We are very pleased that the Committee has listened and responded to the concerns we raised in our submission. These unnecessary reviews not only put needless burden on families but also are an inefficient approach and a waste of limited resources. The inquiry has clearly revealed the need for a more targeted approach to reviews and ensuring that appropriate safeguards are put in place to avoid unnecessary burdens on people with a disability and their families.”

Down Syndrome Australia also welcomes the recommendation for the Department of Human Services and the Department of Social Services to conduct an end-to-end review of the administration of the Disability Support Program, including consultation with stakeholders as well as a recommendation to provide people with more time to provide medical evidence to the Department.

• Final report of the Joint Committee of Public Accounts and Audit Inquiry into Qualifying for the Disability Support Pension
• Joint Committee's media release, 10 May 2017

Federal Budget 2017: Down Syndrome Australia commentary

Budget Night 2017-2018

9 May 2017

Down Syndrome Australia's CEO, Dr Ellen Skladzien provides this useful summary of tonight's Federal Budget, on items most relevant to Australians with Down syndrome and their families:

The most positive news for the disability sector in the budget was the decision to provide full funding to National Disability Insurance Scheme (NDIS) through an increase in the Medicare Levy of 0.5 % from July 2019.  This will provide important funding for the Scheme going forward. It is likely to be controversial as it is basically a tax increase- but provides ongoing funding for NDIS and security for the scheme going forward.

One area of concern in the budget is a funding cut of $12 million to the Information, Linkages and Capacity building component of NDIS.  This is funding that supports organisations, like Down Syndrome organisations, that deliver information, referrals and peer support to people with disability. It is also the part of the scheme designed to assist people with disability who are not eligible for an individualised NDIS package of support. The Government has rationalised this by indicating it is due to WA not joining the national scheme.  However, given that the current level of ILC funding is extremely low compared to the required level of support required in the sector, it is disappointing to see this cut.

Other key budget measures for disability include:

• $33 million dollar package to support aged care and disability workforce growth
• $209 million to establish the Independent NDIS Quality and Safeguards commission
• Investment in Disability Employment Services program over the next 4 years including funding to index payments, funding attached to individuals rather than service providers, and a trial to provide DES to children with a disability in their final years of schooling.
• Changes to the residency requirements for the DSP and age pension.

There are also a range of health measures which will potentially have a positive impact on people with Down syndrome including:

• Lifting the freeze on the indexation of the MBS and reversing the removal of bulk-billing for diagnostic imaging and the increase in PBS copayment and related charges
• $165 million mental health package including $80 million for community psychosocial services
• Investment in health research
• Decision not to privatise Australian Hearing

There was also significant investment in education taking on the Gonski funding model.  This was announced in the lead up to the budget and has been somewhat controversial due to concerns about decreased funding to some private schools.

Overall there are some really positive outcomes; however, Down Syndrome Australia will continue to monitor the ILC situation- particularly if WA changes their approach to NDIS.

DSA Director finalist for Western Australian of Year

Down Syndrome Australia News

1 May 2017

Congratulations to our DSA Board Member Catia Malaquias for being a finalist in the Western Australian of the Year awards. Catia is a long standing advocate for inclusive education and representation of people with a disability in the media and advertising.

Catia has made an important contribution to the representation of people with disability in mainstream advertising through her organisation Starting with Julius. She has worked with large Australian retail giants including Target and Kmart to ensure that their advertising is representative of Australians including Australians with a disability. She has also worked tirelessly to achieve recognition of the evidence-based benefits in student outcomes of students with disabilities being educated together with their same-age peers including through her work as co-founder of the School Inclusion Parent Network (SIPN).

We are very fortunate to have Catia as a board member and congratulate her on this honour.

Image description: Photo of Catia and son, Julius,
Playing with dinosaurs, taken at Target Australia
photoshoot.

Down Syndrome Australia raises concerns over use of R-word by AFL player

24 April 2017

Down Syndrome Australia was extremely disappointed to learn that footballer Heath Shaw used the term ‘retard’ at a football match over the weekend in reference to another player. The use of this word is extremely offensive to people with an intellectual disability and there is no excuse for its use. It is a hurtful term which has a long history of being used to bully and demean people with an intellectual disability.

Down Syndrome Australia recognises that Heath Shaw quickly apologised and acknowledged that the use of this term was inappropriate. At the same time, it is important to understand how damaging the use of such a term by a high-profile athlete is to community attitudes.

“Despite progress in understanding of disabilities, people with an intellectual disability face social isolation and lack of community understanding. In a recent survey of more than 800 families of people with Down syndrome, nearly a third indicated that they had experienced stigma and discrimination in the community. The casual use of the deeply offensive R-word by high profile Australians reinforces stigma and negative attitudes and has a significant impact on how the community views people with a disability”, said CEO Down Syndrome Australia Dr Ellen Skladzien.

Down Syndrome Australia will be writing to the Australian Football League to call for further education of AFL players on issues around disability and appropriate use of language.

It should be noted that the AFL has been proactive in disability awareness. They have supported the Fiona McBurney Match Day Experience which enables people with Down syndrome to participate as part of the match-day umpire team. This program provides a unique opportunity for people with Down syndrome as well as raising community awareness and understanding about Down syndrome.

Down Syndrome Australia looks forward to working with the AFL to build a better understanding of disability within the AFL players and ensure that the use of this inappropriate word is not repeated.

New quarterly newsletter from Down Syndrome Australia

'Welcome to Down Syndrome Australia’s first newsletter, bringing you key highlights from our work, information on upcoming events and opportunities to share your views and experiences. Down Syndrome Australia was established in 2011 as the peak body for people with Down syndrome in Australia. 

Our vision is an Australia where people living with Down syndrome are valued, reach their potential and enjoy social and economic inclusion. '

You can subscribe to receive the newsletter online via the Down Syndrome Australia website - scroll to the bottom of the page to enter your email address.

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 info@downsyndrome.org.au

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

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 Victoria, Down Syndrome Western Australia, Down Syndrome South Australia, Down 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.

#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.

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” ...

Watch the best short movie of the year

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 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.

Weekend reading and viewing: 18 - 19 March 2017

Not 'Special' Needs - just 'human needs'

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' ...

Artist's Stunning Photos Shatter Misconceptions About Disabilities
Elyse Wanshel, Huffington Post

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 ...

Down syndrome or Trisomy 21?

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” ... 

UK HDI Works to Improve Representation of People With Disabilities

Whitney Harder, UKNow 

13 March 2017

World Down Syndrome Day Awards 2017 announced

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.

#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.

#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.

#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.

#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.