People with Down syndrome in the news

Canterbury-Bankstown athletes to take part in Special Olympics Asia Pacific Games at Newcastle in December

Adam Vidler, Canterbury-Bankstown Express, 21st October 2013
The green and gold will be proudly worn by six ­Canterbury-Bankstown athletes at the inaugural Special Olympics Asia Pacific Games ... Our honour roll includes bocce player Cameron Chance, of Yagoona, who said he was looking forward to playing in the singles and doubles events at the games.

"I am very, very excited to be able to represent Australia," he said. "How amazing." ...

Mona Vale's Amanda Storey is hoping to strike it lucky at Special Olympics

Kat Adamski, Manly Daily, 23rd October 2013

Thanks to her prowess with a bowling ball, Amanda Storey of Mona Vale will represent Australia at the inaugural Special Olympics Asia Pacific Games in December. Ms Storey, who has Down syndrome, is part of the ten pin bowling team along with Josie McLean, of Collaroy Plateau, and Lisa Vineburg, of Dee Why.

"I've been bowling for about 10 years - and I get strikes a lot," Ms Storey, 28, said."My family is coming to cheer me on when I compete (in the Special Olympics)."


Down’s syndrome doesn’t define these young, Israeli backpackers

Spence Feingold,  The Times of India, 19th October 2013
The meeting between Israeli and Indian youngsters at India Gate early this week was not your average cross-cultural exchange. Both groups consisted primarily of individuals with Down's syndrome ...
The 11 young adults — all in the age group of 20-30 years — were each accompanied by one of their siblings. The group hiked through Corbett National Park, Kasar Devi and Nanda Devi National Park and stayed a few nights in Rishikesh. "We trekked to 4,000m above sea level. The group far surpassed my expectations," said Jaman Singh Rawat, a guide who led the excursion.

"At first I was very nervous and wasn't sure how the group would manage on such an intense trek. In the end it was so amazing," stated Inbal Rotman, who accompanied her younger brother who has Down's syndrome. "Although it was a hard climb, the view from top was definitely the best part of my trip," said her brother, Ilan Bar ...


Woman with Down's syndrome to be paid compensation for illegal detention

Owen Bowcott The Guardian, 22nd October 2013
The  (UK) government has been ordered by the European court of human rights to pay compensation to a severely disabled patient with Down's syndrome for detaining her illegally.


Glee’s Lauren Potter Hits the Red Carpet 

Beth Douglass, Wet Paint, 21st October 2013
We haven’t seen Lauren Potter (aka Glee’s sassiest and most adorable cheerleader, Becky) since last season, but fans of the sweet Cheerio can rest assured: She will be back soon! ...

'Inclusion in education:towards equality for students with disability'

Children with Disability Australia’s latest issues paper was released today, launched by Disability Rights Commissioner, Graeme Innes in Sydney.

Inclusion in Education – towards equality for students with disability is a detailed review of the research literature and looks at the barriers and low expectations faced by students with disability, what inclusion really means in education and the outcomes that can be achieved when it is done well. What does this mean for education reform in Australia?

• Links to the paper are available here on the CDA website.

Australia must do more to educate disabled children
Fran Kelly, ABC Radio National, 23rd October 2013
A new report to be launched today by the National Disability Commissioner calls for Australia to lift its game when it comes to educating children with a disability.Despite he right to an inclusive education being enshrined in the UN Convention on the Rights of Persons with Disabilities, it's still common for students to be denied this right in our country.Today's report calls for a review into educational practices and the culture of segregated schools. Interview with Dr Kathy Cologon, the report's author (audio file).

Guidelines for communicating in emergencies

These guidelines might be useful to some in the current bushfire State of Emergency here in NSW:

Communicating with People with Disability: National Guidelines for Emergency Managers

These guidelines have been designed to support emergency managers to better understand the varied communication needs of people with disability. They are intended to inform and complement the wide range of policies and procedures developed at all levels of government, business and the not-for-profit sector in support of incident management and the delivery of emergency warnings.

• The guidelines, including a 'quick' version can be downloaded in  a variety of formats from the Australian Emergency Management website, here.

Exercise and overheating: warning signs in people with Down syndrome

Timely advice with the arrival of what is shaping up to be a long hot summer:

Warning Signs a Person with Down syndrome is Getting Overheated

Brian Chicoine, MD, Advocate Medical Group Adult Down Syndrome Center, 21st October 2013
Exercise is important for people with Down syndrome just as it is for all people. For all people, care must be taken to avoid overdoing it with exercise. Excessive sweating can be a sign to ease back, get a good drink of water, and cool down.

However, some people with Down syndrome don’t sweat much and can get overheated more easily. It is important to watch for signs of overdoing exercise or overheating ... read the whole article here.

Occupational Therapy Awareness Week

• Occupational Therapy Australia provides a searchable directory for OTs working in a range of fields via its website.

Down syndrome awareness ... what is it, why do we need it, is it enough?

October is Down Syndrome Awareness month in North AMerica, and here in Australia we have formally claimed the third week of October as Down Syndrome Awareness Week for about 20 years.

Raising 'awareness' about Down syndrome has been a high priority for Down syndrome support groups around the world since their emergence in the earlier 70s, with well developed campaigns developing particularly over the last two decades. Achieving a balance between presenting positive, hopeful messages to both families and the broader community while advocating for the very real support needed by people with Down syndrome as individuals has sometimes raised robust discussion, even within the Down syndrome community.

More recently a push 'beyond awareness' has been noticeable, particularly from individuals (often parents, who have always been at the leading edge of social  and cultural change affecting our sons and daughters) capitalising on the wide and easy reach of social media. Some commentators make a case for more rapid and radical evolution than others, some voices are more strident than others. The call is broadly for awareness to give way to more proactive acceptance, advocacy and frank activism for and by people with Down syndrome.

Is this the natural evolution of the concept of 'awareness', or is it a response to external drivers  such as new, less-invasive prenatal testing (expected to markedly reduce the population of people with Down syndrome), or to recent research that has stimulated discussion about whether Down syndrome needs to be cured, is it part of general social change around access to information, rights and 'ableism' in disability circles ... or all or none of these?

These links are just a sample of the direction of current discussion about awareness and beyond:

Down Syndrome Awareness Month: Why It Should Matter to Everyone

Sipping Lemonade, 1st October 2013
Knowing something exists is far different from having a true understanding. It’s like seeing pictures of the Eiffel Tower vs. taking pictures from the top. Like watching a romantic comedy vs. falling in love. Like walking into a Babies R’ Us vs. holding a sleeping newborn ...

Awareness, Acceptance, Advocacy, Action

Big Blueberry Eyes, 20th March 2013
... Where do we go after raising awareness? I have been raising awareness on my blog for 7 years now, and on FB for about 4 or 5 years. In raising awareness I feel like I'm preaching to the choir. The majority of the awareness seems to happen within the Down syndrome community ..

What’s the point of Down syndrome awareness?
Mark Leach, Down Syndrome Prenatal Testing, 8th October 2013
October is (US) National Down Syndrome Awareness Month. But, what’s the point of raising awareness about Down syndrome? ... we have Down Syndrome Awareness Month because not only have people with Down syndrome not been included in the telling of our shared experience, for most of our history they have been purposefully excluded, segregated, and hidden from society. This exclusion nurtured ignorance about Down syndrome, and ignorance begets fear. The awareness is needed to enlighten and eliminate this fear ...

Down Syndrome: Awareness to Acceptance
Jisun Lee, Kimchi Latkes, 10th October 2013
What is “awareness”? How can awareness be helpful? Can it be harmful? Where can it lead? October is National Down Syndrome Awareness Month. As I’ve watched and participated in various awareness efforts, I wrestle with the concept and all it entails.

Will an awareness month for my child’s genetic condition help create what I really want—a place at the table of a fully inclusive society? Can the “awareness” alone possibly give rise to the monumental shift that our society needs?

Exposing quotes that reinforce Down’s syndrome myths: The Truth

Hayley Goleniowska, Special Needs Jungle, 9th October 2013
Posters and leaflets dispelling common myths and setting out facts about Down’s syndrome are often created wonderfully by charities to distribute to new families. So rather than reinventing the wheel, I thought I’d highlight a few quotes that have been said to me over the years, think about the subtext behind them and use them as a springboard for explanation of the realities ...

Keeping it Real

Down Wit Dat, 15th October 2013
I'm not so keen on the "awareness" any more; the colours, the gew-gaws, the posters. Instead I'm all about the education or the advocacy part. Even the activism part. One could argue that I always was more of an advocate than awareness raiser given the topics of most of my posts in Octobers past... I may partially agree with you too. However, as I've stated before, I'm done with awareness. Instead, I'm going to advocate. Hard.

National Disability Services: Zero Tolerance Project

Zero Tolerance, National Disability Services' project supporting service providers’ efforts to prevent and respond to abuse and neglect of people with disability, is under way. The project will develop a practical framework, including tools and resources for service providers, and best-practice approaches to early intervention and remediation of abuse and neglect.

Work is being supported by all NDS state and territory offices and by a project reference group, formed after expressions of interest were received. The group brings together professionals from across Australia with current expertise in the field of abuse and neglect, as well as professionals interested in improving service cultures and responses to abuse.

Despite this there is evidence that people with disability continue to be at greater risk of abuse and neglect than people without disability. Concern about these risks has been reflected in a number of recent high profile cases of abuse and through the stories of people related to the Royal Commission into Institutional Responses to Child Sexual Abuse.

The introduction of the NDIS presents new opportunities but also new challenges. There is likely to be an increase in delivery of services in home and community environments where regulation may be more challenging to implement. New risks related to use of new technologies and reliance on the internet may also emerge.

More information, including consultation event dates and locations is at the Zero Tolerance Project page.

Weekend reading and viewing: 19th - 20th October 2013

Growing Up With a Disabled Sibling

Rachel Adams, Motherlode, New York Times, 10th October 2013
“Mom, when are you going to write a book about me?” my 7-year-old son, Noah, asked as we sat on the floor of his room, surrounded by packing materials from the box that had arrived earlier that day. Inside were copies of my new book, each with a picture of me holding Noah’s brother, Henry, on the cover. Henry has Down syndrome, and the book is about the first three years of his life ...

Behind the Scenes - I'm a Champion
A short look behind the scenes of filming a campaign to support the Special Olympics Asia Pacific Games in December this year. The film crew included film making students with intellectual disabilities. The finished videos are here.

How to respond to the r-word

Maureen Wallace, Chasing Charlie, 9th October 2013

... What would you do? Some organizations that advocate for people with disabilities share tips and even practice scenarios. Here are some of my favorites ... (Brian Skotko) shared advice that immediately depressurized my social spine, or my inclination to feel the need to speak up every time I hear the R-word.

That's not my name - an anti hate-crime anthem
Paul, Stay Up Late, 23rd September 2013

... we were concerned how words around disability were used in the media and so we thought we’d have a go at writing a song ... The words ‘hate crime’ weren’t holding a meaning for the people with learning disabilities that we were talking to, and that obviously presents a real problem. How can you report a crime if you don’t know it’s being committed? ... we talked about how, among other things, it’s about the abusive names people get called ... And here’s the result – our anthem against disability hate crime, and we’re happy for this to be shared far and wide to help spread the message.

Confessions of a special needs parent: the hard things
Ellen Stumbo, finding beauty in brokenness, 6th June 2013
Parenting a child with special needs can be a challenge, and often those challenges feel like a strong tidal wave coming at us, threatening to make us lose our balance, to fall, to give up. But we don’t. We never do ...

21 Things People Don’t Get About Kids With Down Syndrome
Ellen Seidman, Babble, 14th October 2013
In honor of Down Syndrome Awareness Month, I decided to ask parents of kids with Down syndrome about the stuff people just don’t get about their kids. There are so many misconceptions, misunderstandings and flat-out mistakes about children with DS, and just what having three copies of the 21st chromosome means. Things can be especially challenging when kids are little-little and in that stage where parents are constantly comparing milestones ... (Click on the photos at the end of the page to read the following 20 responses)

A Break from the Norm
Jessica-isms, 14th May 2013
... For the past decade I have been under the impression that there is such thing as a “perfect” special needs child. You know that perfectly cute, exceedingly happy child that lights up the room when they enter – the “poster child” for their disability? My child most certainly is NOT that child ...

Recess for your Child with Special Needs: 7 Challenges and Solutions
Karen Wang, Friendship Circle, 17th October 2013
Recess has major benefits for children’s well-being and ability to learn. ... But sometimes recess is the most anxiety-provoking part of the school day: 15 to 30 minutes of unstructured play surrounded by noisy kids.

TV Characters With Disabilities On The Rise
Shaun Heasley, Disability Scoop, 14th October 2013
Twice as many characters with disabilities will appear on broadcast television this year as compared to last, a new report finds, though they still account for just 1 percent of those depicted.

Disability - a fate worse than death?
Stella Young,  Ramp Up, 18th October 2013
Relieved at the defeat of the Voluntary Assisted Dying Bill yesterday, ABC Ramp Up Editor Stella Young remains opposed to legalising assisted death in any form. Here she explains why.

Step Up for Down syndrome Sydney: photo post #3

A massive 'Thank You' to Down Syndrome NSW and Priscilla
for another well organised 'Step Up For Down syndrome'
Team Bellarina had a wonderful day, and we're already looking forward to next year

Feedback from first phase of Disability Services Act review

From NSW Ageing, Disability and Home Care:

The Disability Services Act 1993 (the Act) is being reviewed. A total of 600 people attended 25 public consultation session and 64 written submissions were received. The Feedback summary paper on the reform of NSW disability laws (PDF) is now available on the ADHC website.

Some recurring ideas that were raised include:

• that laws should better define disability and support with a focus on needs and not what a person’s disability is
• people should be able to choose where they receive services
• that laws should work towards building a community that includes everyone.- 

See more here. 

Library Thursday: 17th October 2013

• Reading Our Way

Following on from the successful workshops recently held in Sydney and Newcastle, the Down Syndrome NSW library has a copy of Reading Our Way, published by the Down Syndrome Association of Queensland. These items are not for loan but are available for patrons to access in the library.

• Toilet training for children with special needs, by Continence Foundation of Australia, Victorian Branch

This app has been developed from the One Step at a Time series for teaching toileting skills to children with special needs. The booklet is available in PDF and other tip sheets here. 

• Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters, by Brian Skotko and Susan P. Levine is now available in a Kindle edition.  It is 'is the first book written exclusively for teens with a brother or sister with Down syndrome.'
  
  
• An excerpt from A Room of Golden Shells: 100 Works by Artists and Writers with Down Syndrome, published by Woodbine House on World Down Syndrome Day this year, is available for viewing here, in honour of the US Down Syndrome Awareness Month.
  

• UK resources on the dual diagnosis of Autism Spectrum Disorder and Down's syndrome

Earlier this month, the Down's Syndrome Association in London held a meeting to provide information and support for parents and carers of children with a dual diagnosis of Autism Spectrum Disorder and Down's syndrome. The day was divided between a presentation from developmental psychologist Gill Bird and a general discussion, where parents talked about how their lives and ways of coping and suggested ways the DSA could support parents better.

Resources now available from the meeting include the DS/ASD Day Summary, and the presentation from the day - visit the DSA website for links. Further such meetings are planned.

• 2013 Speech Pathology Australia Book of the Year Awards announced

Each year, Speech Pathology Australia awards three Australian authors the “Best Book for Language Development” in the categories – Young Children, Lower Primary and Upper Primary. 

Each award is based on the book’s appeal to children, interactive quality and ability to assist speech pathologists and parents in communication and literacy development. 

Visit the Speech Pathology Australia website for more information about this year's winners.

• Contact the Down Syndrome NSW library at library@dsansw.org.au

Step Up for Down syndrome Sydney: photo post #2

Thanks to Josh, Krystle and Isla Coburn (3 1/2) for these fabulous photos from Step Up for Down syndrome in Sydney last Sunday.  This event really makes the most of its spectacular venue, especially when the weather sparkles as it did this year.

... more later.

2013 NSW Carer of the Year: Anne Naylor

NSW Minister for Ageing and Disability Services, John Ajaka, acknowledged 10 carers aged between 16 and 79 for their dedication and commitment to their family and friends at an awards ceremony at Parliament House on Monday (14th October).

Mr Ajaka said the awards also recognise two outstanding carer support groups that have made an exceptional contribution to caring.

“The NSW Carers Awards provide us with an opportunity to pay tribute to the work of carers and raise awareness about the important role they play in our community,” Mr Ajaka said.

“There are 850,000 carers in New South Wales – one in ten people are looking after a family member or a friend who has disability, a mental illness, a chronic health condition or are frail aged.”

Access Economics estimates that nationally, carers provide 1.32 billion hours of care each year saving the Australian taxpayer $40 billion annually.

2013 Carer of the Year: Anne Naylor
Anne Naylor has four adult children, three of whom need care. 

Her eldest son has Down Syndrome, autism, dyspraxia, mild hearing loss and sleep apnoea. Anne provides all of his personal daily care and advocates on his behalf as he moves into adulthood. 

Another child has bipolar disorder and two have attention deficit hyperactivity disorder, and Anne provides them with practical and emotional support as they navigate through life.

Anne educates others about caring for children with disability. She is a carer representative with Carers NSW and she has spoken on radio and written newspaper articles about her caring experience. Anne has bipolar and has recently published a book, Art From Adversity: A Life With Bipolar, which describes her experience of living with a mental illness while caring for children with disability. 

Anne also draws on her personal experiences to deliver an annual lecture to medical students, at the University of Sydney, about a parent’s response to the birth of a child with disability.

Anne has completed a Masters in Special Education and is an accredited interpreter.

• Radio 2GB interview with Anne Naylor 15/10/2013

Among the ten carers on the Highly Commended list for the awards, was Anne Burgess from Yass who was born with her own disability, is devoted to caring for her 55-year-old sister who has Down Syndrome and is partially blind. Anne was also primary carer for her late father who sadly passed away a couple of months ago aged 97 and her mother who had cancer. 

Our congratulations to Anne Naylor and all of those recognised in the awards.

See more at about the 2013 NSW Carers Awards on the Ageing, Disability and Home Care website

Step Up for Down syndrome - a Sydney family tradition

Don and Alison Mason and their boys are long term supporters of our community awareness walks, and have brought along a growing family contingent over the years.  When Jack, who has Down syndrome, was little, Don carried him across the Sydney Harbour Bridge on his shoulders ... and he did it again on Sunday for our first Step Up for Down syndrome event, on a very warm spring day.

Jack knows he's on a good thing!

The family has grown with Connor's arrival ... 

... so big brother Ben has taken on shoulder carrying duties too!

The extended family contingent

Ben, Don and Jack must have one of the biggest collections of these event T-shirts!

It looks as though things were a little cooler in Launceston (Tasmania) on Sunday for the local Step Up for Down syndrome event at Royal Park. The Launceston Examiner published a gallery of 21 photos by Paul Scambler from the event today - long sleeves and jackets are in evidence, along with happy faces and enthusiasm (and shoulder riding) as the walkers step out.

2014 Amplify Your Art grants

Applications for  2014 Amplify Your Art  grants are open until 18th December 2013:

Amplify your art is a professional development grant program for NSW artists with disability. The Amplify your art program is designed to assist individual artists in all art forms to further their practice through undertaking professional development. 

Grants will be awarded for amounts of between $5,000 and $10,000 for the costs associated with developing an artist’s professional practice. Costs can include training, mentoring, travel and skills development. 

Applicants from regional and remote NSW are particularly encouraged to apply.

Visit the Accessible Arts website for further information about the grant criteria and application process. Links to information about current Amplify Your Art recipients and their projects are also available on this page.

2014 Down Syndrome NSW Calendar: out now

As he has done for 15 years, professional photographer and Down Syndrome NSW member, Craig Peihopa (Timeline) has put together our annual calendar, and delivered it for release in Down Syndrome Awareness Week.  Thank you to everyone who contributed photos, and to Craig for your dedication and expertise over so many years.

Calendars are $16.50 each, including GST, postage and handling.

• Download and print an order form for our 2014 Calendar here

Facebook Q & A with General Manager Human Services ... for Carers

This week is not only Down Syndrome Awareness Week, but Carers Week:

Facebook event details here.

Weekend reading and viewing: 12th - 13th October 2013

The Seer and the Seen

Dave Hingsburger, Rolling Around in My Head, 10th October 2013
I saw a young man with Down Syndrome, maybe 8 years old. He was with both his mom and dad and they were having a good time. He was happy. I know those kinds of moments. I have them all the time. Moments of complete and utter inclusion, where disabilities and differences of all sorts just drop away. Lovely, lovely moments. He looked to be having one of those ... Make sure you read right to the end, and then read the comments - they might give you an idea or two.

Disadvantage and Intellectual Disability - why do we continue to ignore it?
Daniel Leighton, Ramp Up, 4th October 2013

People who are isolated by the nature of their disability are at risk of a loneliness. People with intellectual disability, whose needs and presence are rarely in the public eye, encounter additional challenges and limitations to daily life. Daniel Leighton asks, what will it take to end their deep and persistent disadvantage?

Killed over a movie ticket: How law enforcement hurts people with disabilities
Emily Shire, Salon, 6th October 2013
A man with Down syndrome died in a confrontation with police ... In late July, the federal government finally took note and opened an investigation into whether police violated Saylor’s civil rights. This slow-moving process reveals something disturbing: Our law enforcement system often fails to protect people with intellectual and developmental disabilities and, in some cases, is complicit in their abuse ...

Summary of Nojin decision
Disability Rights Blog (Australian Human Rights Commission), 10th October 2013
Nojin and Prior v Coffs Harbour Challenge Inc (in liquidation), Stawell Intertwine Services and the Commonwealth of Australia [2012] FCAFC 192
Mr Nojin has a moderate intellectual disability and epilepsy. Mr Nojin had worked at an Australian Disability Enterprise (ADE) called Coffs Harbour Challenge for almost 25 years. Mr Prior has a mild to moderate intellectual disability and is legally blind. Mr Prior had worked at an ADE called Stawell Intertwine Services for about two years ...

Graeme’s speech – National Disability Services conference re Nojin decision BSWAT
Graeme Innes, Disability Rights Blog (Australian Human Rights Commission), 10th October  2013
This week, Disability Discrimination Commissioner Graeme Innes spoke to the National Disability Services conference about the application for an exemption from the Disability Discrimination Act relating to the Business Services Wage Assessment Tool. Here is what he said ...

Team Australia official announcement and function Admiralty House (27 photos)

Special Olympics Australia, 11th October 2013
Photos from the announcement of the 400 Australian athletes who will represent Australia at the inaugural the Special Olympics Asia Pacific Games, taken at a formal event at Admiralty House, Sydney, hosted by the Governor-General. 

The first photo is of a delighted Lucy Dumitrescu meeting Geoff Heugill. The Games begin in 50 days in Newcastle.

The names of all of Team Australia's 400 athletes and their support teams have now been posted online, with links to the their individual fund-raising pages for the Asia Pacific Games - start here.

People with Down syndrome in the news and online ...

Jenny’s Work Experience
Down's Syndrome Association (London) blog, 8th October 2013
My name is Jenny and I am 22 years old. I would like to tell you what I have been doing since leaving school. I did a few work experiences – at Grundfos pumps, Gentoo and Portland College café ...

Heidi's blog

Heidi is a young woman who has Down syndrome, and lives in the UK. She blogs about her day to day experiences, with candour and humour.

Walkers to raise Down syndrome awareness 
Lisa Wachsmuth, Illawarra Mercury, 23rd September 2013
While acceptance and inclusion of people with Down syndrome has come a long way, Albion Park mother Karyn Ellem said her six-year-old son Beau was still waiting for his first invitation to a birthday party.
Mrs Ellem is helping organise the Step Up for Down Syndrome event in Wollongong on October 27 ...

To you, he's a Down syndrome baby - to me, he's just perfect
Katrina Abianac, Australian Women's Weekly (online edition), 24th September 2013
To some people, Katrina Abianac's eight-month-old son Parker is just another Down syndrome baby but to her, he's a beautiful little boy who just happens to have Down syndrome. It's a small but significant distinction Katrina wishes more people understood.

It's been a journey for us both

Maeve Sheehan, Irish Independent, 29th September 2013
Aimee (Richardson), 31, is an actress who has Down syndrome. She has just finished working on the next series of Punky for RTE, a children's animated television series. The character's creator, Lindsay Jane Sedgewick, has described Punky, made by Geronimo Productions, as "feisty, fun, frustrating and loveable. She lives in the moment and also happens to have Down syndrome." Not a million miles away from Aimee, then.

Hoover woman with Down Syndrome creates unique clothing line

Melanie Posey, Fox News, 12th July 2013
... Ashley DeRamus, who has Down Syndrome, has designed her own clothing line for others with the syndrome ... "I'm not ashamed to have it," she said. "I can do anything except drive." ...

Ashley By Design

Love is Stronger (music video)
Jason Crabb, posted online 27th September 2013.
Features Ashley DeRamus (see above)

Research opportunity

The Compose study continues to enrol participants around Australia, including two Sydney sites, and one in Wollongong.  Click here to check locations and contacts - other locations will be added.

New(ish) website: analysis of people with disability and the Australian media

Are you ever bothered by how people with Down syndrome and/or other disabilities are portrayed in the local media?

Disability and Media Matters is a blog and Facebook page, started in April this year ... 'exploring the representation of people with disability in the Australian news media, and perception of people with disability to that representation.'

The site belongs to Shawn Burns, who describes himself as a  '... father, husband, son, journalism lecturer at the University of Wollongong, PhD candidate, former print and television journalist/news director  ...'

Disability and Media Matters discusses and highlights the representation of people with disability in the Australian news media, and, importantly, showcases the reaction and perception of people with disability to that representation. 

It highlights stories that feature people with disability, and the issues that impact their lives, and their families.

Library Thursday: 10th October 2013

© Windsteel | Dreamstime.com

As you know, many organisations (such as ours) now publish their periodicals online - here are four five recent issues of online newsletters that we enjoy and find useful:

Ombo Info, Vol 4 Issue 2, October 2013
Includes an article about the Ombudsman's most recent report into Deaths of People with Disability in Care in NSW.

Service, Support and Success, Vol 2, Issue 10 (October 2013)
This month's topic is Cognitive Ramping: Principles of Plain Language and Accessible Communication

Accessible Arts NSW Newsletter, October 2013
All the arts news, including a compilation on Critical acclaim for Back-to-Back Theatre's 'Super Discount' (playing in Sydney until 19th October), and Resounding applause for Second Skin  - both include performers with Down syndrome.

NDIS News, Issue 3, September 2013
The first issue of NDIS News under the new Coalition Government gives notice that the name DisabilityCare has already reverted to NDIS, among other news.

Soapbox, October 2013
The newsletter of Special Olympics Australia - lots of information about the Asia Pacific Games (Newcastle, December 2013) in this issue.  A good place to start if you are looking for an overview of all the things that SO Australia does.

Gluten-free recipe app for iPhone/iPad

Coeliac disease occurs more frequently in people with Down syndrome, so resources making a gluten-free diet easier to manage are welcome.

Healthy Food Guide has released an iPhone/iPad app, 101 gluten-free recipes, recommended by a DS NSW member.

The recipes in this app are simple, use readily available ingredients, and they meet our strict nutrition criteria so you know you're also getting healthy meals full of nutrients. 

And, most importantly, the food is delicious!

An internet connection is not necessary to use the app, so shopping for ingredients is easy too.

NDSS Webinar: double feature for Down Syndrome Awareness Month

The (US) National Down Syndrome Society presents a regular series of webinars on range of topics. To mark Down Syndrome Awareness Month (all of October in the US - the third week of October is Down Syndrome Awareness Week here in Australia), a double feature is scheduled:

ONE FAMILY, TWO PERSPECTIVES
Part I: Visions, Dreams and Goals, an overview of Self-Advocate Craig Blackburn’s life philosophy and triumphs. 
Tuesday, October 22  (1:00 PM ET, US) 

Part II:  A Mom’s Journey, will feature Craig’s mom, Patricia Ehrle, who will provide a behind-the-scenes glimpse into raising a man with Down syndrome and finding sources of support and motivation along the way. 
Wednesday, October 30

Time differences usually make it difficult for  us to tune in live from Australia, so we are very appreciative that NDSS makes the webinars available online afterwards - click here for more information about scheduled events, and links to past webinars.

Step Up for Down syndrome - Sydney: this Sunday

Step UP! for Down syndrome Sydney is on this Sunday 13th October 2013. 

It is going to be a glorious Sydney day with expected temperatures to peak at 31 Degrees...

Online pre registrations for Step UP! Sydney close 

this FRIDAY 11th October 2013 (midday). 

Don't forget Step UP! for Down syndrome merchandise is now available to purchase!!! 

To order please call Priscilla on (02) 9841 4404.

If you haven't already registered for you local Step UP! event, please click on the links below and get started. We would love to see you there to share in the fun and excitement of the event.

Click on the location of the event you wish to attend and follow the registration instructions.

SYDNEY - 13th October First Fleet Park, Circular Quay

WAGGA WAGGA - 20th October The Botanic Gardens, Wagga Wagga

ILLAWARRA - 27th October Stuart Park, Wollongong

This is an opportunity to come along and celebrate Down Syndrome Awareness Week with your friends and family. Regardless of if you are fundraising or not we would love to see you there.

All monies raised will assist us in funding the key services provided by Down Syndrome NSW that directly benefit people with Down Syndrome and their families.

If you have any questions about this year’s event, please do not hesitate to call Down Syndrome NSW on: 02 9841 4444 or email us at stepup@dsansw.org.au 

Research news and commentary update #8 for 2013

Annual comprehensive health assessments are important for people with ID in rural areas of Australia

The Sage ID Study (UNSW) Facebook page posted on 9th September 2013: 

... A recent study published in Rural and Remote Health has highlighted the importance of annual comprehensive health assessments for people with ID in rural areas of Australia, and the crucial role of the carer/support worker to the health assessment process. The study also found that the increased social cohesion and community connectedness in rural areas is perceived to improve the well-being of people with ID. 

Follow this link to read more. You can view the full article, or view a printable version here.

Citation: Burton H, Walters L. Access to Medicare-funded annual comprehensive health assessments for rural people with intellectual disability. Rural and Remote Health 13: 2278. (Online) 2013.

“Silencing” the extra 21st chromosome

Voices at the Table Advocacy (VATTA), 10th September 2013
... scientist(s) may be able to turn off the extra chromosome that makes people have Down syndrome.

When I heard about this I had mixed feelings. Some talk was about “curing” Down syndrome. People with Down syndrome are not sick. It is only a small part of them and they do not need to be cured ...

Down Syndrome: Towards A New Research Era And Effective TherapiesAmy Julia Becker, Thin Places, 3rd October , 2013
... My hope for this series is to collect an array of voices, and to start a civil conversation among people who disagree with one another so that we might all learn together ...

There are around 250,000 people with Down syndrome living in the US – not 400,000

Frank Buckley, Frank Talk - Down Syndrome Education International, 12th September 2013

A paper published recently in The Journal of Pediatrics estimates the population of people with Down syndrome alive in the USA in 2008 – not the oft-stated 400,000. Even this may be an overestimate.
It is important to understand the size and the demographics of populations of people with Down syndrome in order to plan services. In an important paper, recently published online by The Journal of Pediatrics, Angela Presson and colleagues present an estimate of the current population of people with Down syndrome living in the USA in 2008, which they calculate to be 250,700 with a 90% uncertainty interval of 185,900-321,700 ... Analysis of how the revised estimate was reached.

More choline for mom decreases Down syndrome effects
Blaine Friedlander, Cornell Chronicle, 11th September 2013

Down syndrome fetuses dramatically benefit when their mothers increase their intake of the nutrient choline during pregnancy and nursing, report Cornell researchers in the journal Neurobiology of Disease

Faulty stem cell regulation may contribute to cognitive deficits associated with Down syndrome, study suggests
Krista Conger, Stanford School of Medicine, 11th September 2013The learning and physical disabilities that affect people with Down syndrome may be due at least in part to defective stem cell regulation throughout the body, according to researchers at the Stanford University School of Medicine. The defects in stem cell growth and self-renewal observed by the researchers can be alleviated by reducing the expression of just one gene on chromosome 21, they found.Abstract

Research update on cognition in Down syndrome
The Down Syndrome Research and Treatment Foundation and the Down Syndrome Association of Central Texas held a research information evening in September.  Speakers, Dr. Jon Pierce-Shimomura and Dr. Michael Harpold have made their presentations available for download:

• Down Syndrome Cognition Research: Mind to Lab Bench to Bedside  - Dr. Michael Harpold, Chief Scientific Officer and Chair, Scientific Advisory Board, DSRTF 

• Frontline Report on Recent Advances in Down Syndrome Research -  Dr. Jon Pierce-Shimomura, Assistant Professor of Neurobiology, Waggoner Professorship in Molecular Biology, University of Texas at Austin

Q&A with James DeGregori, Crnic Institute Challenge Grant Recipient

Global Down Syndrome Foundation, September 2013

In recognition of September as Blood Cancer Awareness Month, the Global Down Syndrome Foundation held a Q&A with Dr. James DeGregori, who has received one of the inaugural Crnic Institute Grand Challenge Grants. DeGregori received the award for his research into leukemia and Down syndrome, specifically the increase in leukemia incidence and other problems with blood cell production, including reduced immunity, in people with Down syndrome ...

Down Syndrome: Towards A New Research Era And Effective Therapies

Amy Julia Becker, Thin Places, 3rd october 2013

... I asked Dr. Faycal Guedj, a researcher at Tufts University who has been working on these new treatments, to provide an overview. Dr. Guedj also has a 25-year old sister with Down syndrome, so he approaches the subject from both a clinical and personal perspective ...

UN recommendations to Australia on disability rights obligations

UN: Australia failing to meet its obligations to people with disabilities 

David Marr, AM (ABC Radio), 7th October 2013
The United Nations has found Australia is failing to meet its obligations to people with disabilities. It's the first time the UN has assessed whether Australia is meeting its international requirements under the Convention on the Rights of Persons with Disabilities, to which Australia is a signatory. As a result the UN has made a number of recommendations to the Australian Government ...

... Therese Sands, the co-chief executive officer of People with Disability Australia, was among those on the delegation. She has welcomed the recommendations made by the UN committee.

It's evident that the voice of people with disability in Australia has been heard. I think we're just very pleased that the lived experience at that grass roots level was taken to a global level in the UN, that the UN listened and then they provided these comments back to the Australian Government to benefit the people with disability who are affected every day by these issues ...

• Transcript and audio file.

• Concluding observation of the UN Expert Committee

• People with Disability (Australia) on the UN Convention on the Rights of {Persons with Disbaility

Timeless wisdom, bears frequent repetition ...

Behavioral change as communication

Brian Chicoine, Adult Down Syndrome Clinic, 6th October 2013

... When I teach medical students and residents, I always tell them that if they are going to sleep through the rest of my presentation, this is the one slide they should review.

“There is an interaction between physical and mental health”.  

“Any and all behavior change should be viewed as a possible communication tool”.

When there is a behavioral change, it is imperative to look at possible contributing factors. Could there be a physical health problem? A social issue? A psychological stress? A problem in any and all of these areas can contribute to behavioral change ...

... read the whole post here, remember and share it around.

• And today's post, Health promotion and assessing health also has universal relevance

Weekend reading and viewing: 5th - 6th October 2013

Two Opposite Issues and 

Part 2, Two Opposite Issues: Common characteristics
Brian Chicoine, Adult Down Syndrome Clinic, 3rd  and 4th October 2013

... People with DS can develop illnesses that are treatable; all is not Down syndrome. Families share stories that this adage is not always followed and evaluation is skipped and the diagnosis becomes “It is just Down syndrome”. The corollary to “All is not Down syndrome” is that all people with Down syndrome are not the same …

Michael J. Fox a role model for disabled

Jennifer Laszlo Mizrahi, USA Today, 26th September 2013
... with the premiere of the Michael J. Fox Show Thursday night, Fox's role as an actor could transition him into a major civil rights leader for people living with disabilities ...

Reflections on Italy
Kate Strohm, Siblings Australia, 29th September 2013
... the term ‘carer' was not heard the whole weekend ... there is no such word in the Italian language. Parents were referred to as parents, and families as families, regardless of whether they include a child with a disability ...

What I’ve Learned Raising a Child with Down Syndrome

Rachel Adams, Maria Shriver, 24th September 2013
Lately I’ve been thinking a lot about Lillian and Martin, a couple I met last summer just after they learned that the baby they’re expecting has Down syndrome. They were devastated at the news, and thinking of giving the child up for adoption.A mutual friend asked if I would tell them what it has been like for me to raise a son with Down syndrome ... I’ve had conversations like this before, and they are never easy. They’re hard on expecting parents ... They’re also hard for me. I try to keep an open mind, and not to pass judgment. This doesn’t mean I don’t have opinions ...

Wellcome Image of the Week: Down’s Syndrome

Iona Twadell, Wellcome Trust, 2nd August 2013
This week’s Image was taken as part of the ‘Shifting Perspectives’ exhibition, which celebrates the lives and achievements of people with Down’s syndrome through photography. It shows Kate Powell and her friends sharing a lunch break while working at the Platform One café in Clapham, London.

The Damaging Language of “Cure” and Down Syndrome

Rachel Adams, Thin Places, 2nd October, 2013
... when I look more closely at what the scientists are saying about their own work, they rarely speak of “curing” Down syndrome but rather of mitigating its effects. The problem really arises as the popular media attempts to translate what may be very complicated and very preliminary research findings into something newsworthy ...

Recruiters must have working solution to deal with disability
Graeme Innes, Sydney Morning Herald, 3rd October 2013
Forty-five per cent of the two million Australians living with a disability, live in or near poverty, according to the Organisation for Economic Co-operation and Development. This is partly because most of us spend much of the small income we receive on services and supports. The new national disability insurance scheme will address this over the next few years. Another reason is because we participate in the job market at a rate that is 30 per cent lower than that of the general population. And when we are employed, we are significantly underemployed ...

A letter to my younger self
Stella Young, Ramp Up, 4th October 2013
There are a lot of things I could tell you. I could tell you about moving away from home and all the friends you'll make ... that your life will be exciting and full of wonderful people who love you. All these things are true.

But I know what you really want from me. You want to know about sex and love and relationships - not necessarily in that order. So that's what I'm going to tell you about, because god knows no-one else has anything to offer that can calm your fears ...

The 2013 IDSC World Down Syndrome Day video was produced for the International Down Syndrome Coalition, and features the song "Who I Am" written and sung by Sarah Conant.

Dare 2B Different: summer camp

• Further information: Scripture Union of NSW webpage for Dare2B Different web page

Congratulations to swimmers

Congratulations to the swimmers who competed and won medals at the 2nd National Down Syndrome Swimming Championships last weekend in Sydney. Swimmers were aged from 13 to 39 years, and came from all states and New Zealand.

All results are available online at the Down Syndrome Down Under Swimming Organisation's website.

Keep an eye on the DSDUSO website for details about the 7th Down Syndrome Swimming World Championships to be held in Morelia, Mexico,  9th - 17th November 2014.

Only 10 Days to go before Sydney kicks off 

Step UP! for Down syndrome 2013

If you haven't already registered for you local Step UP! event, please click on the links below and get started. We would love to see you there to share in the fun and excitement of the event. Click on the location of the event you wish to attend and follow the registration instructions. SYDNEY - 13th October First Fleet Park, Circular Quay WAGGA WAGGA - 20th October The Botanic Gardens, Wagga Wagga ILLAWARRA - 27th October Stuart Park, Wollongong This is an opportunity to come along and celebrate Down Syndrome Awareness Week with your friends and family. Regardless of if you are fundraising or not we would love to see you there. Following feedback from Members we have created an "offline" registration form that you can fill out and email/ fax back to the office. To download this form please click HERE. FUNDRAISING A big THANK YOU to all those amazing people who have already set up their teams and commenced raising money. If you think you too can raise money for Step Up! please follow the links after you have registered and set up a Team, join a Team or donate to one of the Teams already established. Its a great way to involve friends, colleagues and family. So join us , bring a comfy walking shoes, drinks and sunscreen for a great day in the sun!!!. All monies raised will assist us in funding the key services provided by Down Syndrome NSW that directly benefit people with Down Syndrome and their families.

If you have any questions about this year’s event, please do not hesitate to call Down Syndrome NSW on: 02 9841 4444 or email us at stepup@dsansw.org.au 

Wordless Wednesday

Image: Sally Crosbie

Down Syndrome NSW Board 2013 - 2014

Down Syndrome NSW congratulates the members of the 2013 - 2014 Board and thanks the members of the previous Board for their efforts. The new Board is:

Matthew Kelly, President
Margot Elliffe, Vice-President
Richard Yee, Treasurer
Tracylee Arestides, Secretary

Committee members:

Jacqueline Little

Meaghan Hepplewhite

Chris Elenor

Ingrid Rikkert

Jason Lloyd

Greg Simmons

Graeme Dube

News, commentary and resources related to the NDIS (7)

Making the most of the NDIS - Opportunities and Challenges for people with disability and families 

A free Resourcing Families event  for people with disability and their families. Dr Michael Kendrick will speak about how Australia can learn from international experiences of individualised funding. 

13th November 2013, Sydney.

NDIS News Issue 3, September 2013
The first issue of NDIS News under the new Coalition Government gives notice that the name DisabilityCare has already reverted to NDIS, among other news.

Disability agency manages name changes

SBS News/AAP, 25th September 2013
The federal government is looking to save money as it changes the name of the agency in charge of the national disability insurance scheme.

Fifield in position to act for disability
Dr George Taleporos, Ramp Up, 23rd September 2013

Last week, Prime Minister Tony Abbott announced Senator Mitch Fifield as the Assistant Minister responsible for disability and carers in his new ministry. Dr George Taleporos spoke with the man who is tasked with fulfilling the Coalition's promise to fully implement the National Disability Insurance Scheme and advancing the opportunities of people with disabilities.

Disability reform is enough to keep any minister busy

Stella Young, Ramp Up, 19th September 2013

Given Australia's lacklustre record and the number of people relying on improvement, let's hope we don't rue the abolition of a dedicated minister for disability reform ... Awaiting the announcement of Prime Minister Tony Abbott's new Cabinet appointments earlier this week, there was one question on my mind: Would Senator Mitch Fifield be our new minister for disability reform? I was hopeful. In his role as shadow minister for disabilities, carers and the voluntary sector, Fifield was a tireless champion ... (and) he understands that disability reform isn't just about the NDIS; it's about education, employment, infrastructure and inclusion in all aspects of Australian life.

A Personalised Approach to Safeguards in the NDIS
Marita Walker, Kate Fulton and Bruce Bonyhady, Centre for Welfare Reform, March 2013
This discussion paper is the result of work led by the Safeguards and Quality Assurance Expert Group as part of the NDIS implementation groups. It draws together current thinking around capital building for all citizens and empowering safeguarding in the context of the emerging NDIS.

Equal but differentEl Gibbs, Overland 212, Spring 2013
But what will DisabilityCare really do? Or, more to the point, what will it do differently? At the heart of the new scheme is an anachronistic concept of disability support that – while still providing benefits for individuals – may hinder future attempts to tackle the wider social exclusion of people with disabilities ...