Friday, 30 September 2016

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 ...
  • 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 Centre66 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 or via mail to
Emily Wu
PO Box 3173
North Parramatta NSW 1750
Nominations close Friday 14 October 2016 at 5.00 pm sharp.

Thursday, 29 September 2016

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 

    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 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

    Wednesday, 28 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).
    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.

    Tuesday, 27 September 2016

    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 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:

    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 ...

    Monday, 26 September 2016

    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 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

    Saturday, 24 September 2016

    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 ...
    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 ...

    Friday, 23 September 2016

    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.

    Thursday, 22 September 2016

    Calling for people with disability to star in this year's Don't DIS my ABILITY campaign!

    From Don't DIS my ABILITY, the NSW campaign for the International Day of People with Disability:

    We want to hear the employment stories of people with disability for potential inclusion in videos, photo shoots, blogs and interviews. 

    If you’d like to apply to take part in the campaign or nominate someone you know, please APPLY NOW at before 5pm Tuesday 27 September.

    Recent commentary on prenatal testing, disabled people's rights and women's rights

    Annalisa Lista, WEST, 9 September 2016
    There is a French court case that will certainly go down in history. The protagonists are 7 young people with Down Syndrome. They are appealing to the National Authority because of a decision by another French body (that evaluates content of advertising) to remove a commercial that tells young mothers who are expecting babies with Trisomy 21 to not be afraid. 

    The commercial was taken off the air because it was considered ambiguous and discriminatory against women who, if in the same situation, would choose abortion. The participants in a widespread anti-abortion movement and the many associations that for years, have protected the rights of parents with children who have Down Syndrome, have a very different perspective. 

    In fact, it was precisely these people who asked the children of the parents they represent (with Down Syndrome) to show up in court, without lawyers — to give more visibility to the case. Needless to say, they are against the French body that pulled the ad.

    Disability rights and reproductive rights don't have to be in conflict
    David Perry and Elizabeth Picciuto, LA Times, 29 August 2016
    ... Rather than limit women’s rights, we believe we must build a more understanding, accessible society that supports people with disabilities and provides services to parents. That’s how we can safeguard access to abortion while ensuring that it isn’t the only feasible option following a prenatal diagnosis.

    The first step is to educate the public. Mass media and our politicians repeatedly send out the false message that disability equals suffering. Disabled people do suffer and struggle. But much of that suffering is caused by correctable injustices: lack of resources, lack of accessibility or lack of knowledge ...

    NIPT or not to NIPT – is that really the question?
    Jane Fisher and Professor Lyn Chitty, Bionews 864, 15 August 2016
    ... Uptake of Down's syndrome screening varies across the country, with an average of around 65 percent of women in England choosing screening. The other 35 percent either believe their risk is low or do not want to know whether their fetus has Down's syndrome. Among women who accept screening and are found to have a chance of >1 in 150, only around half undergo invasive testing, often because they don't want to put their pregnancy at risk ...

    ACMG Releases New Statement on cell free DNA Prenatal Screening
    Mark Leach, Prenatal Information Research Consortium, 4 August 2016
    The American College of Medical Genetics and Genomics (ACMG) has issued a new statement on cell free DNA prenatal screening. As with its initial statement, the ACMG separates itself from existing statements and guidelines on cfDNA screening ...

    Keeping the Backdoor to Eugenics Ajar?: Disability and the Future of Prenatal Screening
    Gareth M. Thomasand Barbara Katz Rothman, AMA Journal of Ethics. April 2016, Volume 18, Number 4: 406-415
    In this short commentary, we reflect on how ideas about disability intersect with prenatal technologies and what this likely means for the future landscape of reproductive medicine. In what follows, we assess the argument that prenatal technologies represent a form of “eugenics,” defined here as practices and policies designed to promote the reproduction of people with desired attributes—and, thus, avert the reproduction of people with undesired attributes (e.g., people with disabilities). The idea that the world and the people in it would be better off if everyone were born “healthy,” that is, without “defect,” is the essential principle of eugenics (translated literally as well-born) ...

    Wednesday, 21 September 2016

    Carers Australia: Evidenced-based and intensive support approaches to avoiding long-term welfare dependence have merit

    Released 20 September 2016:

    Carers Australia can see merit in the Government’s announcement of the Try, Test and Learn Fund to explore interventions which may help people at risk of long term dependence on income support, including young carers, to break the cycle.

    However, this should not come at the expense of a reduction in necessary income support for any carer and those they care for while the trial is underway and before benefits are realised.

    Carers Australia CEO, Ara Cresswell, said, “Young carers have been correctly identified as some of those most at risk of welfare dependence throughout their lives. They are more susceptible than other young people to the problems of workforce accessibility given the nature of their caring role.

    “It is crucial, however, that any programs geared towards securing better life outcomes for young carers do not do so at the expense of those supports currently relied upon simply to maintain a means of living. It is also important to understand that many young carers face a range of complex challenges which impact on their capacity to engage in education and employment and these must be addressed under any program to support them into work.

    “Young carers often experience extreme social isolation, financial hardship and high levels of emotional stress due to caring responsibilities way beyond those expected of other young people their age. An intensive program of support will be required to address all these disadvantages and replacement care will need to be provided to those they care for if the trial is to work.

    “It is very important that the employment outcomes for young carers and other groups engaged in the trial must be sustainable and monitored over the long term. Fixed term budget savings from a reduction in welfare benefits in and of itself are not a good indicator of the success of the social investment approach.

    “In 2012 there were 306,000 young carers under the age of 25 in Australia, 23,200 of whom provided the majority of care in the household. Of these, in March 2016 there were 9,623 receiving the Carer Payment and Carer Allowance and an additional 2,197 receiving the Carer Allowance only.”

    Media reports:

    Coalition to reveal plan to tackle welfare dependence across generations
    katherine Murphy, The Guardian, 20 September 2016

    A New 'Investment Approach' To Breaking The Welfare Cycle
    Karen Barlow, Huffington Post, 20 September 2016

    Young carers fear being depicted as a burden on society, Carers NSW says,
    Emily Bourke, PM (ABC Radio), 20 September 2016

    Latest additions to 'events' page

      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 

      Resourcing Families - presented by Margaret and Jeremy Ward, this workshop explores how to create partnerships between families and services that really works. Free for people with disability, family members and their friends. Booking essential.
      18 October 2016 - Tamworth
      19 October 2016 - Armidale
      20 October 2016 - Taree

      For those with and without disabilities, 13 - 30 years
      4.30 pm - 5.45 pm Mondays 24 October - 12 December 2016 - Newtown

      Physical Well Being Workshops
      Perfect for all abilities and age groups, no prior experience necessary.
      4.30 pm - 5.45 pm Mondays 24 October - 12 December 2016 - Newtown

      Tuesday, 20 September 2016

      Educational videos from the Adult Down Syndrome Center

      First in a new series of short videos designed to support people with Down syndrome to stay healthy:

      A Healthy Pace for Eating
      Adult Down Syndrome Center, 13 September 2016 2016
      Being able to learn about and participate in our own health promotion is a key factor in improving anyone’s health. This educational video, created by the Adult Down Syndrome Center at Advocate Lutheran General Hospital in Park Ridge, Ill. aims to help persons with Down syndrome learn how to keep themselves healthy by establishing good eating habits.

      To learn more about the Adult Down Syndrome Center, visit the websiteOur videos are now available on Facebook, our web page and on You Tube. Watch for more videos soon.

      News and commentary from the broader disability community

      Dave Hingsburger, Of Battered Aspect, 14 September 2016
      ... I think language both reflects change and initiates change. I think the recognition of the work we do as providing support directly to a person in a professional manner is part of the larger solution of transforming the disability sector. I think that same recognition can transform individual staff who work in difficult situations as it reminds them what they are there doing and that, no matter what, they are professionals doing a job, a sometimes very difficult job. We are what we call ourselves ...

      Rape Culture and Disability - what we’ve learned from Brock Turner, Nicholas Fifield, and the erasure of victims with disabilities
      David Perry, Pacific Standard, 8 September 2016
      ... the victim ... is disabled. So, even as the reporting humanizes Fifield by presenting a nuanced (sometimes generous) picture of the star athlete gone wrong, Doe (the victim) has been dehumanized, reduced to a collection of diagnoses, and cast into a system primed to remove sexual autonomy from people with intellectual or developmental disabilities (IDD) ...

      How the Sitcom ‘Speechless’ Understands Families Like Mine
      Neil Genzlinger, New York Times, 9 September 2016
      If you live in a household like mine — one with a nonverbal child — you’re anticipating one television show above all others this fall: “Speechless,” ... A prime-time series on a major network about “us”? It’s occasion for excitement, and for reflection. What, exactly, do we who live in the “Speechless” universe hope this series will accomplish?

      Rachel Adams, The Conversation, 30 August 2016
      My research helps me to see continuities between the tragedy in Japan and the practice of institutionalization which started in the U.S. and Europe, and remained the primary way for managing people with disabilities for over a century. Regrettably, that practice still continues in many parts of the world.

      Monday, 19 September 2016

      Screenability NSW: putting disability on screen and behind the camera

      Screen NSW today launched Screenability NSW, a new program to create opportunities in the screen industries for people with disabilities.

      Screenability NSW is a unique partnership between Screen NSW, Ai-Media, AFTRS, Carriageworks and Bus Stop Films. It will activate a program of initiatives that will deliver on an open-ended policy commitment by Screen NSW to work with industry to grow participation in the screen sector by Australians with disabilities.

      Photo caption:  Tim Ferguson, co-director and co-writer of Spin Out and
       performer with The Doug Anthony Allstars; Sofya Gollan, Screen NSW 
      Development and Production Executive; and Paul Nunnari, performer 
      and disability advocate
      Upcoming Screenability NSW activities include:
      • An annual film festival at Carriageworks
      • A short film-making initiative to finance and deliver films for premiere at the festival, for travelling around Australia and the world, and for screening online
      • A long-term job placement scheme
      But it kicks off with the Screenability NSW Internship Program, a series of up to eight paid internships on some of Australia’s most-watched “event” TV shows and highly-anticipated feature films, working with Australia’s leading production companies, broadcasters and streaming services.

      Confirmed to participate in the Screenability NSW Internship Program are:
      Eurovision (Blink TV/SBS TV)The NRL Footy Show (Nine Network)Playschool (ABC TV)The New Year’s Eve live broadcast (ABC TV)The Mardi Gras Parade broadcast (Golden Duck/SBS TV)Animal Logic (World-leading animation and VFX co)See-Saw Films (Lion, Top of the Lake, The King’s Speech)Goalpost Pictures Australia (Cleverman, The Sapphires, Holding The Man)Proxi VRGuerilla Films (Wyrmwood)Playmaker (The Code, Love Child)Matchbox Pictures (Barracuda, Real Housewives, The Slap, Wanted)Screentime (Janet King, Anh Do’s Brush with Fame)CJZ (Gruen, The Checkout, House of Hancock, Bond)Jungle (No Activity, Here Come the Habibs)FoxtelStanABC iView
      The program will create opportunities for people in the technical and creative areas of screen production, including set building, art dept, camera and sound depts, make up and wardrobe, along with writing, producing, admin and production roles, plus editing, sound design, VFX, composing and many more. There will also be opportunities in the programming, scheduling and commissioning departments of partners including Foxtel, Stan and iView.

      Applications for the Screenability NSW Internship Program open Monday September 19th and close Friday October 21st

      The point of having a long list of participating productions is to give the selected interns a greater choice of professional opportunity.

      New resources from Down Syndrome Australia

      Down Syndrome Australia has published three new resources, all free to read and/or to download from the DSA website:
      Ageing and Down Syndrome
      - a 30 page booklet
      Down syndrome in the workplace for employees  
      - a 12 page booklet
      Down syndrome in the workplace for employers  
      - a 20 page booklet,

      Friday, 16 September 2016

      Weekend reading and viewing: 17 - 18 September 2016

      'He was sitting there reading his book': Rescuers share joyful moment missing boy found
      Cameron Baud, Yahoo7, 14 September 2016
      Two men who were among hundreds of volunteers searching for missing Victorian boy Ben Dean have described the joyful moment they found the six-year-old reading his book in the bush ...

      A Letter to Myself on the Day I Found Out My Daughter Has Down Syndrome
      Amy Silverman, Seleni, 9 September 2016
      When my newborn daughter was diagnosed with Down syndrome, I had no idea what to expect. I was sure of just one thing: My life was over. Ditto for my husband and our older daughter. I was completely lost, and it took me years to find my way. Looking back, the cliché "if I'd only known then what I know now…" resonates more than I would have thought possible. That realization prompted me to write a letter to my 36-year-old self – that scared woman with a tiny baby and a lot to learn. Now standing on the brink of 50, I realize I really am older and wiser. And very, very lucky ...

      We need to talk about Bella
      Daily Dose of Bella, 15 September 2016
      ... we need to talk about Bella, but we don’t, we really really don’t. We need to talk about the ethical debate around NIPT (non-invasive prenatal testing) and how the results of screening are delivered to parents ...

      Dominating The Down Syndrome Swimming World Champs
      John Beckworth, Coaching Life, 24 August 2016
      ... Phoebe is now one of several swimmers in my program who have either Down Syndrome or a physical disability. They are not trained differently – Phoebe is trained with my national squad and is expected to do everything that they do, except in speed of swimming. My coaching style adapts to the needs of the person I’m working with, whether they learn at different rates or in different styles ...

      Judge orders civil trial in death of 26-year-old with Down syndrome

      Theresa Vargas, Washington Post, 9 September 2016
      A federal judge in Maryland ruled Friday that a lawsuit against three Frederick County sheriff’s deputies will move forward to ­trial, allowing a jury to decide whether their actions led to the death of a young man with Down syndrome ...

      How labels didn’t stop a family from achieving full inclusion for son with developmental disability
      Janice Fialka, Stateside (Michigan Radio), 7 September 2016 (Podcast 14 m 19s)
      ... (the family) launched themselves on a mission to prove that labels and IQ tests are not true measures of someone's ability to be valuable to the world, to contribute, to learn ...

      Scrapheap Adventure Ride 2016

      Scrapheap is back for it's roughest toughest year yet!

      The Scrapheap Adventure Ride is back for it's seventh great journey through the Aussie outback.

      To the many people who supported scrapheap in the past we wanted to say a huge 

      Thank You!

      We would love your support again this year.

      Help us reach our target of $100,000, to enable people with 
      Down Syndrome reach their full potential.

      This year that destination is Kallara Station, Tilpa, in western New South Wales, where all ‘Scrappers’ plus family, friends and supporters will meet for a weekend of fun and entertainment at a campsite from 30 September 30 to 2 October .

      That's over 900km from Sydney!

      We have 60 riders registered and have raised of $15,000 so far! The aim is to raise $100,000!

      Over the past 6 years Scrapheap has raised over $400,000 for 
      Down Syndrome NSW which has had a huge impact on people 
      with Down syndrome and their families.

      Thursday, 15 September 2016

      News, resources and commentary on the NDIS (56)

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

      Disability Loop - a way to find out more about the National Disability Insurance Scheme (NDIS). Through Disability Loop you can:
      • Find a great selection of resources relating to the NDIS
      • Find out how the NDIS is working for other people
      • Have your say about the NDIS
      • Keep up to date with news and events about the NDIS
      Disability Loop is a project that has been paid for by the NDIS. It is run by, and for, people with disability and their allies.

      What on Earth is Supports Coordination, Plan Management and LAC?
      Libby Ellis, InCharge, 29 August 2016
      This is another confusion-clearing piece – this time about the difference between Supports Coordination, Plan Management and Local Area Coordinators (LACs).
      • This is the second post of a six-part series on confusion-clearing and myth-busting pieces about the NDIS.
      Auslan video series on NDISThe National Disability Insurance Agency has released an Auslan video series. The five videos provide Auslan interpretations of some of the Agency's recent videos. The videos cover general information about the National Disability Insurance Scheme (NDIS), getting ready for the NDIS, the NDIS pathway as well as working with the NDIS.

      You can watch the five Auslan videos in the playlist here

      espyconnect, 31 August 2016
      ... with the introduction of the NDIS, I feel my life is once again being controlled by budgets and measured units of time. Now it is about our daughter’s NDIS package and the monetary budgets it contains. It is a worrying thought as organisations become more focused on their finances and maximising funding. I am concerned that this will affect the focal concept of the client’s being at the centre and I believe will make finances the focal point. I am seeing this happen right in front of my eyes ...

      Luke Bo'sher, Disability Services Consulting,15 August 2016
      Two months have passed since the NDIA released its final housing policy paper. Now that we all know the detail, what are players across Australia doing about creating housing?

      DSC has held forums and met with private developers, group home providers, community housing providers, governments, banks and the NDIA. This is what we are seeing emerge as the next generation of housing in the NDIS ...

      Charities Must Not Be Afraid To Invest in NDIS Future
      Pro Bono News, Andrew Donne, 1 September 2016
      The NDIS constitutes a seismic shift for the disability sector. But now is not the time to lose faith – it’s more important than ever that organisations have the courage of their convictions, and continue to invest in the future ...

      Launchpad - Our Story: Getting Started With The NDIS
      A website published by Austism Spectrum Australia with a focus on information and experiences about life after school. The section on 'getting started with the NDIS' might be of interest to people with a dual diagnosis of Down syndrome and autism.

      Women Carers Rights and Wrongs, 2 September 2016
      When it comes to doing the hard yards, we carers do the lion’s share. But our portion of the spoils is meagre, and the belly of one particularly tetchy lioness is growling.

      Wednesday, 14 September 2016

      Research news and commentary #10 for 2016

      The Global Down Syndrome Foundation has funded a landmark study led by renowned scientist, Dr. Joaquín Espinosa, Associate Director for Science at the Linda Crnic Institute for Down Syndrome. The results of the study were published online by eLife, an open-access life sciences and biomedical research journal ...
      The full text of the research paper is available by free access on eLife:
      Down's syndrome as a risk factor for severe lower respiratory tract infection due to RSV
      Galleguillos C et al, Acta Paediatrica, 18 August 2016 (Epub ahead of print)
      Aim: To compare the clinical characteristics of children with and without Down's syndrome hospitalized due to respiratory syncytial virus (RSV).
      ... Conclusion: Children with Down's syndrome hospitalized due to RSV LRTI, have a longer hospital stay and worse clinical course than children without. Our findings support the need of RSV prevention in children with Down's syndrome, especially in children younger than one year. 
      • The abstract is free online, access to the full text of the article requires purchase. To date, 'this article has been accepted for publication and undergone full peer review but has not been through (the final editing process), which may lead to differences between this version and the Version of Record.' 
      Communication intervention for individuals with Down syndrome: Systematic review and meta-analysis
      Nicole Neil and Emily A. Jones, Developmental Neurorehabilitation, Published online: 18 August 2016
      Objective: A systematic review was conducted to identify effective intervention strategies for communication in individuals with Down syndrome ...
      ... Conclusion: The results suggest that behavior analytic strategies are a promising approach, and future research should focus on replicating the effects of these interventions with greater methodological rigor.
      • The abstract is free online, access to the full text of the article requires purchase.

      Hidradenitis suppurativa (HS) and Down syndrome (DS): Increased prevalence and a younger age of hidradenitis symptom onset
      George Denny and Milan J. Anadkat, Journal of the American Academy of Dermatology, September 2016 (published online 22 August 2016)
      Hidradenitis suppurativa (HS) occurs in approximately 1% of the general population.1 It is characterized by recurrent inflammatory nodules, sinus tracts, and scarring, most commonly in the axilla and groin. The origin is unknown, but is most likely related to inflammation and immune dysfunction, combined with extrinsic factors.2 The relationship between HS and Down syndrome (DS) was noted in 1977 by Dvorak et al.3Since then, scattered case reports have been published but the mechanism underlying this association remains unidentified. Details regarding the relationship between HS and DS, such as effect on disease incidence and age of onset, are also lacking in the literature ...
      • The full text of the article is available free online
      Community Care Review, 18 August 2016
      The Centre for Applied Disability Research has launched a new Disability Knowledge Clearing House that aims to connect service providers and consumers with the latest research evidence ...

      And in case you missed it we posted yesterday about, updated statistics on birth incidence and population prevalence of Down syndrome have been published for the USA up to 2010, that 'will provide a baseline to assess the impact of NIPS as more data becomes available in the coming years. We anticipate that it will not be until 2017 that we will have an opportunity to assess the impact of NIPS on its first full year of use in 2012.'

      Australia Council for the Arts - Disability Action Plan

      Thanks to RUCKUS  for the link - and we agree, if you are interested in the arts, let The Australia Council know what you think of the Disability Action Plan!

      Disability Action Plan Survey

      The Australia Council for the Arts is evaluating our 2014-2016 Disability Action Plan and our Arts and Disability Funding program. We would welcome your feedback on the impacts and challenges to date, and your thoughts on future priorities.

      The survey is open to individuals and organisations. We encourage artists with and without disability, arts organisations of all sizes (including but not limited to disability-led organisations), disability service and advocacy organisations, and other interested individuals (such as carers and audience members) to let us know what you think.

      The survey should take about 10 minutes to complete. Your responses are confidential and anonymous. The survey is open until 25th September 2016.

      Once you start the survey, you can pause and come back using the 'Save and Continue later' button at the top of each page.

      Tuesday, 13 September 2016

      Emmy award for 'Born This Way'

      We have not seen this show in Australia yet, but we will be watching out for it on free to air or pay-TV. Let us know if you spot it first:

      Reality TV's 'Born This Way' ... wins Emmy
      Peter Larsen, Orange County Register, 12 September 2016
      “Born This Way,” the A&E reality television series that includes three Orange County residents in its cast of young adults with Down syndrome, pulled off a minor upset at the Creative Arts Emmy Awards on Sunday, defeating bigger and better-known shows to take home the Emmy for outstanding unstructured reality program.

      “Born This Way” debuted its first season of six episodes in December and is midway through a second season of 10 episodes. It won the Emmy over shows such as “Deadliest Catch,” which had taken home the trophy the past two years, “Intervention” and “Project Greenlight.” ...

      ‘Born This Way’ completely deserves its unstructured reality show Emmy
      Marc Silver, Washington Post, 12 September 2016
      Congratulations! You got it right by giving the Emmy for outstanding unstructured reality program to “Born This Way.”

      “Born This Way” is the rare reality show that features characters who are neither petty nor inane and that has a greater purpose than keeping up with the Kardashians — which is ironic, because the same production company, Bunim/Murray, also brings us “Keeping Up With the Kardashians.”

      The program, now finishing up Season 2 (10 p.m. Tuesdays on A&E), looks at a group of people who are practically invisible on TV: the 400,000 Americans with Down syndrome. And what the show does is remarkable ...

      New statistics on incidence and prevalence of Down syndrome in the USA

      Posts and pages linking to statistics about birth incidence and population prevalence of Down syndrome are popular on this blog, probably most often accessed by students.  A permanent link is located in the list at the top of this page. But it is more important that we know how many people have Down syndrome so that appropriate and sufficient supports can be planned for. This interesting new paper adds to information about people with Down syndrome living in the USA:

      Study estimates numbers of people with Down syndrome in the US since 1950
      Mass General News (Massachusetts General Hospital), 8 September 2016
      A new study has estimated, for the first time, the numbers of people with Down syndrome in the U.S., from 1950 until 2010. The total number arrived at by the investigation, which also is the first to break down its findings by ethnic group, is considerably less than previously estimated by several organizations ...

      Estimation of the number of people with Down syndrome in the United States
      Gert de Graaf, Frank Buckley and Brian G. Skotko, Genetics in Medicine (2016). Published online 08 September 2016
      • The abstract is free online, access to the full text of the article requires purchase. 
      Down Syndrome Education International (where Frank Buckley is CEO) has published a brief fact sheet distilling the numbers from the new research paper, to answer a series of questions about changes:

      Monday, 12 September 2016

      International Day of People with Disability 2016

      International Day for People with Disability Australia has posted about this year's theme for activities around 3 December:

      Each year the UN announces a theme. The theme for 2016 is: Achieving 17 Goals for the Future We Want.

      The annual theme provides a frame for considering how people with disability are excluded from society by promoting the removal of all types of barriers; including those relating to the physical environment, information and communications technology (ICT), or attitudinal barriers. 

      This has been occurring since 1992 when the General Assembly proclaimed 3 December as the International Day of Disabled Persons.

      Step Up! for Down Syndrome 2016: NSW

      Step UP! for Down syndrome is an annual event that recognises the abilities and achievements of people living with Down syndrome.
      You are invited to join us and help celebrate Down syndrome awareness month. 
      You can help us support people with Down syndrome and their families by making a donation or by joining us at one of our Step UP! events and walking with family and friends. 
      The annual event brings people together to celebrate, connect and raise funds to support people living with Down syndrome. 
      There will be a barbecue, stalls, raffles and entertainment provided on the day.

      If you cannot attend an event we encourage you to support those participating in the walk by making a tax deductible donation.
      Links to Step Up events nationally 

      Friday, 9 September 2016

      Weekend reading and viewing: 10 - 11 September 2016

      Sixty years of living with Down's syndrome
      Debbie Race, DSA (UK) Journal, 133, Spring/Summer 2016
      I am writing about my experience of living with a sister and a son, both of whom had and has Down's syndrome ...
      • The UK DSA Jounal is published twice a year. It is a rich source of information across a range of topics of interest to familiex everywhere. A number of back issues can be downloaded from the website, here.
      The half-truth of the happiness stereotype for my son with Down syndrome
      Leticia Keighley, Embracing Wade, 6 September 2016... People with Down syndrome and those who know and love them, will tell you that a lot of the stereotypes do not apply and yet they persist despite that. I have come across a few since Wade was born but the most common by far is the old chestnut…“They’re always so happy!”
      I hear it from well-meaning strangers almost weekly. I have perfected my nod-and-smile response mostly because I just don’t have the energy to educate every single person I run into, but also because the response is complicated. There is an element of truth to it but it’s not as cut and dry as it seems

      Priscilla Frank, Huffing Post, 7 September 2016
      ... Like a wildly wrapped package, the sculptures seem to possess some secret or meaning that can’t be accessed, save for an energy that radiates outward; the mysterious comfort of knowing that something is truly unknowable. 

      Judith and Joyce Scott were born on May 1, 1943, in Columbus, Ohio. They were fraternal twins. Judith, however, carried the extra chromosome of Down Syndrome and couldn’t communicate verbally. Only later, when Judith was in her 30s, was she properly diagnosed as deaf. “There are no words, but we need none,” Joyce wrote in her memoir 'Entwined', which tells the confounding story of her and Judith’s life together. “What we love is the comfort of sitting with our bodies near enough to touch.” ...
      • Entwined, by Joyce Wallace Scott was released 28 June 2016
      Trusting your instincts
      Nancy Goodfellow, (US) National Association for Down Syndrome (NADS) News, July 2016
      ... There are times when we need to concede to the professionals regarding our children, but there are times when we need to trust to our instincts. Lily's Social Studies placement was a good example of when I should have remembered that I am the expert when it comes to my child ...

      Beth thought she had no money. But she did.
      Miki Perkins, Sydney Morning Herald, 3 September 2016
      ... Before, when she wanted to dye her hair, go to movies, or get a massage, Beth was told she couldn't afford it, that she didn't have money, she says. But actually, she did ...
      Joy Stein, New York Times, 2 September 2016
      ... I realized that there were other barriers to his full participation unrelated to the physical plant. The only sustained interactions between the children in the two special education classrooms and the rest of the school occurred when older students served as “buddies” to children in special education via weekly half-hour play sessions. Besides his six classmates, only one of whom he befriended, my son had no opportunities to interact with other children his age in school ...