Down Syndrome Australia calls for better information to support new pre-natal testing

Statement from Down Syndrome Australia, 5 October 2016

Down Syndrome Australia welcomes the current discussion in the media about pre-natal testing, prompted by the release of a BBC2 UK documentary involving British actress Sally Phillips who is the mother of a child with Down syndrome, exploring issues around pre-natal testing for Down syndrome.

Over the last few years the capacity to test for genetic conditions such as Down syndrome before birth has increased. It is now possible to detect various chromosomal conditions pre- natally through a blood test also known as a non-invasive prenatal test (NIPT).

It is the view of Down Syndrome Australia that this advance in medical technology must be accompanied by appropriate information to support families in making informed decisions about testing and how to respond to the results. Feedback from the Down syndrome community suggests that in most cases the information provided to families is out-dated or focused on a very negative portrayal of what it is like to have a child with Down syndrome.

“It is critical that decision-making following a diagnosis of Down syndrome is informed by accurate and relevant information and made freely after active consideration of one’s own values and beliefs” stated Angus Graham, Chairman, Down Syndrome Australia.

Down Syndrome Australia is a non-profit organisation whose primary aim is to represent and progress the needs, interests and aspirations of people with Down syndrome and those who support them throughout Australia.

Since its establishment, Down Syndrome Australia has worked closely with its member organisations, the eight State and Territory Down Syndrome associations in Australia, on issues related to pre-natal testing including by developing a national resource available on its website, to ensure that expectant parents in Australia are provided with contemporary, balanced and up-to-date information about Down syndrome and prenatal testing.

Down syndrome Australia will continue to advocate for better pre-natal information and support as part of its commitment to improving the lives of people with Down syndrome throughout Australia.

Health matters

Trampolines
Adult Down Syndrome Center, 21 August 2016 (on Facebook)

We periodically get asked about the use of trampolines by people with Down syndrome. Recreational use of trampolines is associated with significant injuries.
The American Academy of Pediatrics recommends against the use of trampolines for recreational use. The policy statement on trampolines  reports that "Many reports have revealed that head and/or neck injuries accounted for 10% to 17% of all trampoline-related injuries, and 0.5% of all trampoline injuries resulted in permanent neurologic damage". 

The laxity of the joints often found in people with DS could put them at even higher risk. Of particular concern is the possibility of neck injury. Atlanto-axial instability (the slippage of the first vertebrae in the neck on the second) is more common in people with DS. A blow to the head or a sudden jarring movement of the head that might occur on a trampoline could cause spinal trauma. 

Would a normal lateral cervical spine (neck) x-ray guarantee that a neck injury would be avoided with participation on a trampoline by a person with DS? People without DS who have normal cervical spines can have significant spinal cord injuries on a trampoline. Furthermore, we know that normal x-rays don't predict lack of vulnerability to cervical spine injury for people with DS in some other situations such as when under anesthesia. Caution is recommended for all people with DS when under anesthesia because movement of the head/neck under anesthesia has been associated with significant injury to the spine even with a normal neck x-ray. As in people without DS, even with a normal lateral neck x-ray, spine injury is still a potential concern for people with DS who participate in recreational use of a trampoline.

Challenges faced in managing dementia in Alzheimer’s disease in patients with Down syndrome
Vee P Prasher, Hassan Mahmood, Madhumanti Mitra, Dove Press, 20 September 2016
... This literature review aimed to look at the management of DAD (dementia in Alzheimer's disease) in people with DS. The management of dementia is holistic ... The management of DAD in people with DS does present with a number of challenges. However, if clinicians follow good clinical practice guidelines, optimum care can be provided to these under-resourced members of the community. Future research findings from the general population should be applicable to the DS population and will hopefully improve future management and diminish any challenges.

• Dove Medical Press, based in the UK, publishes scientific and medical research with open access. A copy of the full text of this article, published in the journal Degenerative Neurological and Neuromuscular Disease, Volume 6, 2016, can be downloaded for personal use - the link is located below the abstract.

Do you know someone who has a disability and has been affected by breast cancer?
Breast Cancer Network Australia (BCNA) wants to provide better information and support to people with a disability affected by breast cancer, their families and supporters.

To help us understand people’s experiences, we would like to talk to:

• people with a disability who have had breast cancer

• family members, carers or support workers of a person with a disability who has had breast cancer

• people who have had breast cancer and are family members or carers of a person with a disability

• More information here, from BCNA

Down Syndrome Australia: new CEO appointed

4 October 2016

We are very pleased to announce that following an extensive search process, Dr Ellen Skladzien has been appointed CEO of Down Syndrome Australia (DSA).

Dr Skladzien has extensive experience in advocacy, leadership and strategic management positions within the not-for-profit sector. She has expertise in driving change in the disability, health and aged care system through evidenced-based advocacy.

Ellen most recently was the Senior Executive Manager of Policy, Programs and Communications at Alzheimer’s Australia. During her time at Alzheimer’s Australia she has led the advocacy work of the organisation which resulted in dementia being recognised as a national health priority, funding for improvements to the health care system for people with dementia, and most recently support for a program to tackle social isolation and stigma associated with dementia.

Ellen has a Master’s degree in Clinical Neuropsychology and a Ph.D. in Cognitive Psychology from Washington University in St Louis. She has published in peer-reviewed journals and been a lecturer for courses in Statistics, Experimental Psychology and Developmental Psychology.

“We are thrilled to have someone of Ellen’s background, skills and capability join us at DSA. Ellen is passionate about ensuring that the voices of people with lived experience are at the centre of the work she does”, said Angus Graham, Chairman of DSA. At Alzheimer’s Australia, Ellen led a number of initiatives to support people with dementia to set priorities and strategy in advocacy, programs and research including setting up the first Consumer Dementia Research Network in Australia.

Ellen, who will start with DSA on the 17th October, is currently based in Canberra and will re-locate to Adelaide in December. She is married to Tom and together they have two young children, Lilah who is 17 months, and Emy who is 4 years old.

uni 2 beyond: Open Day

uni 2 beyond supports people with an intellectual disability to study courses for interest and take part in university life. Studying for interest is also called “auditing”.

Classes will begin in March 2017 and you can take part for 2 years, with a possible extension to 3 years.

Who can apply: People with an intellectual disability who would like to experience university.

How to be part of the Open Day and apply for uni 2 beyond: 

• Register to come to our Open Day on 31 October 2016  at Sydney University, Camperdown, and learn more about uni 2 beyond. You can bring a friend or support person if you like.
• You can apply for a place after you have attended the Open Day. Please note that there are only limited spaces available. 
• Please read the information in the Information Pack to decide if uni 2 beyond could be right for you. 
• If you would like to come to the Open Day, please send us the Registration Form on page 7 of the Information Pack
• You can email Jemima at Jemima.MacDonald@sydney.edu.au if you have any questions. 

Calling all writers with a disability

Telescope is an annual writing prize for writers with a disability. It is run by Scope’s Communication and Inclusion Resource Centre.

Who can enter?

• Anyone with a disability can enter. There are sections for:
• Adults (over 18 years of age)
• Young writers (12-17 years of age)
• Groups

What can you submit?

• There are three categories in Telescope:
• Non-fiction: Including autobiography, essay, historical writing etc.
• Fiction: A short story or part of a novel
• Poetry: For all the poets out there!

Entries close 17th October 2016

You will find further information and an entry form on the Scope Australia website, here.

International news and perspectives

Nothing without people with disabilities

Catia Malaquias, director of Starting with Julius and the Attitude Foundation - two Australian organisations seeking to change attitudes to disability through media initiatives - and a director of Down Syndrome Australia, is currently at the United Nations in Geneva, to deliver an address at the launch of the Global Alliance for Disability in Media and Entertainment (GADIM).

The alliance 'was created to encourage actions to increase and improve representation of persons with disabilities in the media. Here you will find resources to help create more inclusive media productions' ...

The full text of Catia's speech (3 October 2016) can be read on the Starting with Julius website, here

... In my view, the positive engagement of the media in the realisation of human rights for people with disability is as critical and could be as powerful as the social implications of the right to inclusive education – as recently amplified by the Committee of the Convention of the Rights of Persons with Disabilities. 

Only with the concerted, sustained and positive engagement of the media can social inclusion of people with disability and the realisation of their human rights occur in a proximate timeframe. It takes much longer to change habits than to form them – people with disabilities have been habitually excluded for centuries ...

Out of sight: the orphanages where disabled children are abandoned
Naomi Larsson, The Guardian, 26 September 2016
NGO Disability Rights International has campaigned for institutions to be closed for years but despite progress, there are still shocking instances of abuse ...

Women and girls with disabilities are equal rights holders, not ‘helpless objects of pity’ – UN rights committee
United Nations News Centre, 30 August 2016

... “Policies for women have traditionally made disability invisible, and disabilities policies have overlooked gender,” said Theresia Degener, a member of Committee member in a news release issued by the Office of the UN High Commissioner for Human Rights (OHCHR).

“But,” she added, “if you are a woman or a girl with disabilities, you face discrimination and barriers because you are female, because you are disabled, and because you are female and disabled.”

To address this issue, the Committee has issued guidance for the 166 states that have ratified the Convention on the Rights of Persons with Disabilities to help them empower women and girls with disabilities and to enable them to participate in all spheres of life on an equal basis with others, as set out expressly in Article 6 of the Convention ...
Lurie Institute for Disability Policy spotlights healthcare inequities for women with intellectual disabilitiesJulian Cardillo, Brandeis Now, 30 August 2016
Why is it that nearly half of women with intellectual disabilities are not receiving the appropriate medical care they need and deserve to detect cervical cancer?
Life with a disability in Britain 'has not improved since the London Paralympics'BT, 5 September 2016
The majority of people with disability polled said there has been no change in the way others treat them.  Four out of five disabled people don’t think Britain is a better place to be disabled since the London 2012 Paralympics.

In a poll of 1,000 disabled people more than 70% said there had been no change in the way people act towards them, including the way people talk to them, language people used, and the awareness people had of their needs ...

(UK) Disability hate crime convictions surge by 40 per centJon Stone, The Independent (UK), 9 September 2016
Prosecutions for disability hate crimes surged by more than 40 per cent last year compared to the year before, official figures show ...

Down Syndrome Australia Statement on Australian Story, 3 October 2016

Down Syndrome Australia is the peak organisation for people with Down syndrome in Australia. A key part of our work is raising awareness and understanding about the rights of people living with Down syndrome.

ABC Australian Story is airing a story on Monday night about two adults with Down syndrome who have chosen to marry and live together. The story also covers the very personal decision of these two people about whether or not they will have children and their family’s response to this decision. Down Syndrome Australia will not comment on the details of this specific family situation and the complex and deeply personal decisions that are being considered. 

Down Syndrome Australia believes that people with Down syndrome should be supported to have the same rights, responsibilities and opportunities as other people in the community, including in making decisions about who to marry and whether or not to have children. 

The UN Convention on the Rights of Persons with Disability Article 23 specifically protects the rights of people with disabilities to make decisions about whether or not to have children. People with Down syndrome may need additional support and appropriate information before making a decision about whether or not to have a child. 

This may include consideration of what services and support will be available after the child is born and how they will meet the needs of a child. These are the same issues that people without a disability also need to consider before deciding to have a child. 

Families may not always agree with the decision of the person with Down syndrome but as adults they have the right to make that decision regardless. 

More information about the work of Down Syndrome Australia and the contact details for local support and services can be found at www.downsyndrome.org.au

Media Contact: Angus Graham OAM, Chairman, DSA. 

info@downsyndrome.org.au

mobile: 0434 079 702

World Down Syndrome Congress 2022: Brisbane.

An exciting announcement from Down Syndrome international:

Following receipt of a number of excellent applications to host World Down Syndrome Congress (WDSC) 2021, the Board of Down Syndrome International (DSi) has agreed to revert to a 2 year cycle for the WDSC, with effect from 2020. 

There were compelling reasons to accept the proposals of Emirates Down Syndrome Association, in the city of Dubai, United Arab Emirates and Down Syndrome Australia, in the city of Brisbane, Australia. Following consultation with these parties,

WDSC 2020 will take place in Dubai and WDSC 2022 in Brisbane.

DSi looks forward to working with Emirates Down Syndrome Association and Down Syndrome Australia and further announcements will follow in due course.

• For further information about the World Down Syndrome Congress, please visit the DSi website.
• For information and to register for WDSC 2018 in Scotland, please visit this website
• You can also keep up with Down Syndrome International activities through the Facebook page.

Weekend reading and viewing: 1 - 2 October 2016

Australian Story: ABC TV, 8 pm Monday 3 October 2016

When Michael Cox and Taylor Anderton, became an item, their parents were delighted their adult children, who both have Down syndrome, had found love.

But when the couple, both in their early 20s, started talking about weddings and babies, their parents became alarmed ... (Australian Story)



My Heart Can’t Even Believe It: A Conversation with Author, Amy Silverman

Kari Wagner-Peck, Huffington Post, 30 September 2016

Amy Silverman is a journalist and blogger I have long respected. We are kindred spirits in that we both write about our children who have Down syndrome for readers that include people who don’t. We have also both written books about our experiences ...

Sally Phillips: My son has Down's syndrome - but I wouldn't want to live in a world without it

Elizabeth Day, The Telegraph (UK), 29 September 2016

... Phillips also has a serious side. Next week, the BBC will air a one-hour documentary which she presented and co-wrote, entitled A World Without Down’s Syndrome? The programme examines the issues around Down’s Syndrome with intellectual rigour but is also extremely moving, largely because of Phillips herself who made the decision to include Olly in the film. He emerges as a chatty, engaging and kind little boy who often has his younger siblings, Luke, nine, and Tom, four, in hysterics ...

• BBC post about the documentary 

• You can view a  BBC interview with Sally Phillips (by Frank Skinner) via the Don't Screen Us Out Facebook page, dated 23 September 2016 (we cannot view from BBC page from outside UK)

• We will be watching for the documentary on Australian TV - let us know if you spot it in a TV guide.

Putting kids with special needs in ads isn't just about making moms feel good

Maureen Wallace, She Knows, 19 September 2016

... My son has Down syndrome, and seeing diversity in advertising fills my heart as much as it empties my wallet. But while companies that practice diversity in advertising may be driven by sales, the social benefits are life-changing.

My child needs to see himself reflected in the world, and the world needs to see my son and people who share his differences reflected in the barrage of images hitting us daily ...

Spotlight on non-invasive prenatal testing
Chris Kaposy, Impact Ethics, 8 September 2016
... Canada should learn from the United States’ failure to regulate the industry for Non-Invasive Prenatal Testing ...

Down Syndrome NSW Annual General Meeting 2016

Members are welcome to join us for the Down Syndrome NSW Annual General Meeting which will be held at at 10.00 am on Saturday 29 October 2016.

Our Guest speaker will be Evelyn Scott who will be talking to us about the latest international research. 

There is also a proposal to amend the Constitution of the Association at the AGM - details of the proposed changes are here.

10am Saturday 29 October 2016 

SMC Conference Centre, 66 Goulburn Street, Sydney, NSW

Board Nominations
Nominations are now open to join the Board of Down Syndrome NSW.

To nominate for a board position you must be a paid up Member of the Association. To nominate for the position of President or Vice President, you must be an Ordinary Member.

To nominate complete the below nomination form and return to Emily Wu (the Returning Officer) via email at emilyjanewu@hotmail.com or via mail to

Emily Wu
PO Box 3173
North Parramatta NSW 1750

Nominations close Friday 14 October 2016 at 5.00 pm sharp.

Latest additions to 'events' pages

• Click here for Down Syndrome NSW events

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 

• All current events listings  

Focus Sydney on disability
Focus on Ability Film Festival and NOVA Employment - series of film screenings and information sessions, showcasing some short films and documentaries, and providing information about transitioning from school to employment for students with disabilities. For students with disbaility, families and teachers. Free, RSVP by 14 October essential: Donna 02 8886 5802 or events@novaemployment.com.au20 October 2016 - Penrith
21 October 2016 - Richmond
24 October 2016 - Parramatta
25 October 2016 - Campbelltown
26 October 2016 - Cronulla
27 October 2016 - Hornsby

Art Safari 2016  Exhibition

Challenge Community Services Art Competition is designed to allow people with a disability, living in NSW, the opportunity to further enhance their individualism, independence and status within the community through the expression of art.The selected artworks will be exhibited at Ray Walsh House, 437 Peel Street, Tamworth

1 -14 December 2016 - Tamworth

People with Down syndrome

Mid North Coast disability awareness campaign spreads the word globally

Nambucca Guardian, 19 September 2016

...  (Jacob’s) Year 10 work experience last year became a chance to help Jacob practice being in the work force as well as teach others how to work alongside him as a team member ...

Layton woman with Down Syndrome becomes Taekwondo master

Janae Francis, Standard Examinar, 18 September 2016

Rachel Fairbank may be a quiet, happy and nice woman with Down syndrome, but none of that has kept her from becoming a fifth degree black belt and earning the title of master in Taekwondo ... Immediately upon receiving her new black belt, Fairbank, 38, demonstrated skills that would easily leave casual on-lookers concerned should they ever find themselves sparing with her ...
About Down's syndrome: Luke
DSA (UK)
Meet Luke who is working for Wiltshire Police at the Crime and Communication Centre at Devizes Police Headquarters.

• The Down's Syndrome Association in London, providing support and information in England, Wales and Northern Ireland, has posted a suite of personal stories of people with Down syndrome, including several about where various people work, and the wide range of jobs they do. It is a rich source of information about everyday life, well worth checking out from time to time to see new posts:

Hospital volunteer blossoms at Sharp Grossmont

Karla Petersen, San Diego Union Tribune, 20 September 2016

John Hengesbaugh is a man of many passions. He loves food and social media. He loves performing and meeting new people. He loves flowers and volunteering. And he really loves that he can indulge all of these passions in one place.

The place is Sharp Grossmont Hospital, where the 24-year-old Hengesbaugh makes flower arrangements and delivers them to patients. The passion is mutual ...

5 Ways Jamie Brewer Proves the Sky's the Limit For People With Down Syndrome
POPSUGAR Entertainment, 18 September 2016

Scrapheap Adventure Ride 2016: Plan B looks good!

Congratulations to the Scrapheap Adventure Ride 2016 team on rolling with the change of plans required by a month of substantial rain in Western NSW, impacting directly on this weekend's major fundraising event. They have put just the right Plan B in place for this turn of events:

We have been concerned about the forecasted wet weather. Most of the roads in the Cobar Shire are closed and there is more rain predicted ... we got the call that with Tilpa lining up for its wettest September on record, we have been advised to switch to our Plan B. 

What is our Plan B? 

Anita and Ken Burcher, from Four Corners Farm Stay at Nymagee, in Western NSW, have generously put their hand up to host us on short notice. Nymagee has good wet weather access and red soil which isn’t a sticky as wet black soil. Big Thank you Ken and Anita!!!

All the ‘Scrappers’ plus family and friends will meet at Four Corners for a weekend of fun and entertainment from September 30 to October 2.

Nymagee is a small town in the north west of New South Wales, 618 kilometres (384 mi) north west of Sydney, 130 kilometres (81 mi) south west of Nyngan and 89 kilometres (55 mi) south of Cobar. It is in the Shire of Cobar. At the 2006 census, Nymagee had a population of 103. (Wikipedia).

• You can sponsor a rider or team, or donate to the fundraising campaign through the Scrapheap Adventure Ride website.

• Keep up with the weekend's activities via the Scrapheap Adventure Ride Facebook page - today's image is of the mobile coolroom being towed out from Dubbo to Nymagee. All the mod cons.

Good luck, and have a wonderful adventure to all the riders and support teams setting out in the next few days!

Youth with Disability Network NSW

Another opportunity to give your input to a new initiative from People with Disability Australia:

Are you a young person with disability in NSW? PWDA is looking for input about creating a Youth with Disability Network NSW and we want to hear from you!

Can you spare five minutes to complete the following survey that will help us identify the most important issues for young people with disability?

Please share with your networks.

• Click here to complete the survey

UN questionnaire: individual and organisational submissions invited

Note that submissions are invited from private individuals, as well as international and national organisations, to this United Nations survey:

Questionnaire on the “provision of support to persons with disabilities” - Call for submissions

The Special Rapporteur on the rights of persons with disabilities, Ms. Catalina Devandas-Aguilar, is currently preparing a study, to be presented at the 34th session of the Human Rights Council in March 2017, on the provision of support to persons with disabilities. 

The Special Rapporteur welcomes inputs, in accessible formats (Word), in English, French, Russian or Spanish, from Member States, international and regional organizations, UN agencies, funds and programmes, organizations of and for persons with disabilities, civil society, national human rights institutions and other national independent mechanisms designated or established to monitor the implementation of the Convention on the Rights of Persons with Disabilities, disability or equality Ombudspersons, scholars, research institutions and policy think tanks, private sector businesses and networks, community movements, and private individuals, to provide information on the provision of support to persons with disabilities. 

Submissions should be sent by e-mail to the address sr.disability@ohchr.org no later than 21 October 2016. Concise responses are encouraged, inclusive of relevant attachments where available.

On work, and employment

Disability internships welcomed as game changer

David Tiley, Screen Arts Hub, 19 September 2016

... According to Courtney Gibson, 'We can do lots of things under the Screenability banner over a long period. It is an open-ended policy commitment. We will keep doing it until we don’t need to do it any more' ...

Pressure Mounts To Abandon Sheltered Workshops
Lydia DePillis, Houston Chronicle/TNS,  3 August 2016
... Disability advocates have long argued that allowing workers to be paid less than minimum wage in segregated work environments — known as “sheltered workshops” — is disempowering and unfair.

After years of complaints, the federal government has started to curtail the practice, Democratic presidential nominee Hillary Clinton has come out against it altogether, and some states have passed laws that effectively ban it in favor of services that help people with disabilities find decent-paying work ...

Placing our trust in workers with learning disabilities
Stephen Naysmith, Herald Scotland, 22 August 2016
What do you think of, when you think about jobs for people with learning disabilities? The stereotype of a humble manual job, such as cleaner or porter, or working behind the counter in a cafe?

School leavers with disability programs hitting targets
The Daily Telegraph, Ian Paterson, 2 September 2016
A NSW government program to assist school leavers with a disability find employment is reaping rich rewards. New figures reveal the state’s Transition to Work program is helping 81 per cent of its clients successfully enter the workforce ...

Repost, in case you missed it:

Unique program opens doors for people with intellectual disabilities

Centre for Disability Studies, 6 September 2016

Young people with intellectual disabilities will be embedded as paid interns in two leading Australian organisations, including the Commonwealth Bank of Australia (CBA), as part of an innovative new program at the University of Sydney ...

On representation ...

Putting kids with special needs in ads isn't just about making moms feel good

Maureen Wallace, She Knows, 19 September 2016

... My son has Down syndrome, and seeing diversity in advertising fills my heart as much as it empties my wallet. But while companies that practice diversity in advertising may be driven by sales, the social benefits are life-changing.

My child needs to see himself reflected in the world, and the world needs to see my son and people who share his differences reflected in the barrage of images hitting us daily ...

Diversity, difference and disability and how nine-year-old Knox Gibson is helping change media portrayals

Meanie Pearce and Julie Clift, ABC Central West, 15 September 2016

... That gave me a platform to raise this issue of underrepresentation in the media, which is really important. It ties into how people perceive disability and whether they're in or out ...

Disabled people don’t want to be your inspiration, but if they are it’s no surprise
Tom Shakespeare, The Conversation, 15 September 2016
Should we be inspired by Paralympian achievement? Commentator Frances Ryan recently counselled Guardian readers to be careful to think through their reactions to disabled “superhuman” athletes and academic poster boys like Professor Stephen Hawking. Treat people with disabilities just like everyone else, is the argument. Don’t see us as special. If we have overcome anything, it’s more relevant to highlight the barriers that a disabling world sets in our way, not our medical problems ...

Arts news

Ballet opening Salamanca Dance Festival shines light on performers with disabilities
Felicity Ogilvie, AM (ABC Radio), 21 September 2016

They opened this year's Salamanca Dance Festival in Hobart, presenting a modern version of the classic Russian ballet The Rite of Spring ...

• This report includes fabulous photos, and a link to the audio file including interviews with several people with Down syndrome from the show

Michelle Ryan guides young performers with a disability at Adelaide’s Restless Dance Theatre
Louise Nunn, Adelaide Advertiser, 24 September 2016

Michelle Ryan spends her days helping young performers reach their potential at Restless Dance Theatre, Adelaide’s youth company for dancers with a disability ...

Art group changing lives of Indigenous people with disabilities in Newcastle
Robert Virtue, 1233 ABC Newcastle, 21 September 2016
A community-run program in Newcastle, New South Wales, is having huge success in teaching Aboriginal people with a disability about their culture through art ...

Focus on Ability Film Festival 2016 Award winners
A positive portrayal of a talented best friend who is vision impaired has won the prestigious 2016 Nova Focus on Ability Film Festival.

The film, by Ramon Samson, was chosen from 194 entries from 18 countries - the biggest year in the history of the awards. The International Judges Choice Award went to Okuyo Joel Atiku Prynce, from Uganda, for his documentary Mr Ability.

Now in its eight year, the Focus on Ability Short Film Festival is presented by NOVA Employment. It asks filmmakers to focus on the ability of people with a disability and tell a story on film for the world to see ...

• See this post for information about new workshops with RUCKUS ensemble, starting in October

Weekend reading and viewing: 24 - 25 September 2016

Baby Dylan 
Attitude Live, 28 March 2010 (24m 42s)
We present an intimate story of one couple welcoming a newborn with Down syndrome into their family.



Stockton: A Time for Change

CDAH (Community Disability Alliance Hunter), 13 September 2016
Leigh Creighton is a peer mentor and advocate from Newcastle, NSW. In this video, Leigh interviews Steven, Sandra and Robert who live at the Stockton Centre, about their plans for the future. Leigh also interviews Robert Strike, a leading advocate in this country who heads up Self-Advocacy Sydney. Leigh hopes this video will motivate us all to make our communities more inclusive.

Our parliament is one of the most diverse yet, but it's time for a politician with a disability
Graeme Innes, The Guardian, 22 September 2016

... Why do we need representation? Australians with disabilities, 4.5 million of us, are employed at a rate 30% lower than the general population, and 45% of us live in or near poverty. Our educational outcomes, measured by high school completion, are half those of the general population ...

How to talk to your children about my child

5 Boys and 1 Girl Make 6, 22 September 2016
... Give them the information they want and need at that moment. The rest is not important because it is unknown. No one can tell you right now who Grace will grow up to be. No one has any idea what her dreams and aspirations will be in high school. No one knows if as an adult she will live happily with her husband or at home with her Dad and I ... Please don’t think that because our child was born with a disability that we have given up on her future, because that is the furthest from the truth. We are working diligently every day to over come the set backs that she was born with ...

The Danger of Assumptions and the Importance of Awareness

Adam's Notepad, 16 September 2016
... What surprised me was the number of websites dedicated to not only educating people on what it is, but also on raising awareness of it ... What I did not realize is that being aware that Down Syndrome is a thing is quite different from understanding it. And even if someone understands the genetic ins and outs of Trisomy 21, they may not understand what it means to have Down Syndrome, or how important individuals with it are to the world ...

National Disability Awards Finalists 2016 announced

Message from Karni Liddell, 2016 Patron International Day of People with Disability.

Congratulations to all the finalists in this year’s National Disability Awards.  These Awards recognise the achievements of people and organisations that have improved the lives of people with disability. This year is the 10th anniversary of the Awards and what an outstanding group of people and organisations have taken part. 

Finalists announced for the 10th National Disability Awards

22 September 2016

The Hon Jane Prentice MP, Assistant Minister for Social Services and Disability Services, today announced the 22 finalists in this year’s National Disability Awards.

Now in its 10th year, the Awards recognise the outstanding contributions of individuals, businesses and local governments to improve the lives of people with disability.

The National Disability Awards are held each year in the lead up to International Day of People with Disability on 3 December. This year, there were 129 nominations across eight categories.

Achievements by finalists include:

Developing innovative, attractive and educational web and sound applications, tools and programs that enable children with vision impairment to acquire essential digital skills.
Creating inclusive opportunities for people with disability, injury or medical condition to experience freedom of movement in a weightless environment.
Raising the profile of justice issues faced by people with disability.
Increasing participation in and access to the arts for people who are deaf and hard of hearing.
Facilitating employment opportunities for people with disability.

“As a nation that prides itself on supporting the development of an inclusive society, I am proud to see the commitment and significant contributions made by our finalists over the last 10 years,” Mrs Prentice said.

“There have been some outstanding achievements made by those nominated this year, and it is important that we recognise their accomplishments as they raise awareness of issues facing people with disability and their carers.

The Awards’ eight categories celebrate best practice by recognising the valuable contribution individuals, organisations and initiatives have made to improve the lives of people with disability.

In 2016, Awards will be presented in the following categories:

Lesley Hall Leadership Award*
Employer of the Year Award
Excellence in Community Partnerships
Excellence in Inclusive Community Design
Excellence in Inclusive Service Delivery
Excellence in Technology
Excellence in Education and Training
Excellence in Justice and Rights Protection.

“To celebrate the 10th Anniversary of the National Disability Awards, I encourage all Australians to look to the achievements of our disability champions spanning the past decade and learn how we can work together to reduce social discrimination, to innovate and to bring about change for people with disability.

“I am confident that the work of our National Disability Award finalists will inspire others to realise the importance of making our communities more inclusive.”

The 2016 National Disability Award winners will be announced at a ceremony on Monday, 7 November at Parliament House in Canberra.

• The list of finalists is here.