Weekend reading and viewing 30th - 31st March 2013

A meaningful job; A proud employee
Nicholas Popowich, VATTA blog (Canadian Down Syndrome Society), 26th March 2013

I am proud to be an employee of SaskTel ... I got my job in 2010 out of a summer placement. It began when the Saskatchewan Abilities Council had a program to help find jobs for students with disabilities coming out of high school. That summer job turned into a regular job that keeps me working every day for four hours per day.

The lesson I learned again, the day I cried in my car
Suzanne Perryman, Special Needs Mom (blog), 23rd March, 2013. I was excited to tour the classroom- until I did. Immediately I knew Zoe’s “ team” had underestimated her abilities. I left the school stunned, set out to do my own research, and found the right environment for her in which she has thrived for the last six years.

Teen with Down syndrome tackles Everest
Today, NBC, 25th March 2013
Eli Reimer, 15, has made history doing something many adults would find difficult: hiking to the base of the highest mountain in the world, Mount Everest, becoming the first American with Down syndrome to complete the climb.

Down syndrome advocates call for justice, training
Maureen Wallace, SheKnows.com, 27th March 2013 
In the wake of the death of Robert Ethan Saylor, (US) national and local Down syndrome organizations are calling for awareness and action. But which rally cry will succeed — and which reflects what families of individuals with Down syndrome want from their national organizations?
“Ethan” Saylor had Down syndrome and died after being restrained by three off-duty Frederick County, Maryland, Sheriff’s deputies. While the coroner ruled Saylor’s death a homicide, a grand jury declined to indict the deputies.

A Generational Shift in Understanding Life With Down Syndrome
Theo Malekin, The Atlantic, 27th March 2013 ... the head of the pediatric intensive care unit where Hazel spent her first month of life had a positive outlook on children with Down Syndrome. I remember him telling us not to place limits on what she could do, his relief when it became clear we were committed to our daughter. You see, old attitudes persist.

Naming values, and the values of names
Robbie Williams, Purple Orange, 27th March 2013

On the NDIS being renamed Disability Care ... the only way the use of the word 'care' could be less unacceptable would be if it were applied to every Commonwealth government department, for example the Department of Infrastructure and Transport Care, the Department of Prime Minister and Cabinet Care, the Department of Foreign Affairs and Trade Care etc.

The Scrappers are on their way to Comeroo ...

 ... ride safe, and enjoy!

• Scrapheap Adventure Ride 2013 on Facebook - some pictures from Bathurst and Nyngan are up already! Make sure you check out 'Posts by others' to see some of the preparations.

• Scrapheap Adventure Ride 2013 website for news and to sponsor

World Down Syndrome day in northern NSW

 Olivia has it all covered, ready to celebrate World Down Syndrome Day on 21st March, with the the DSi 'lots of socks' theme, and Harmony Day with a Pacific Island theme, at Gulmarrad Public School.

Jenny Dowell, Mayor of Lismore, Jodie Mills (22), Trish Mills, Krystal Cottam with Kayleigh (5 months) and Kerry Smith with Lachlan (3) ... were a small part of the happy crowd of 40 people who came to Trish's T4321 coffee morning in Lismore last week, to celebrate World Down Syndrome Day

Your World Down Syndrome Day / T4321photos are welcome - please send them to blogeditor@dsansw.org.au, or to admin@dsansw.org.au

Down Syndrome NSW library ...

Okay, so the DS NSW library is not really this big ...
Cornell University Library - public domain image sourced from Pixabay

... will be closed for 4 weeks.

As our office is about to move, the Library will be closed for 4 weeks while we pack, move and unpack the library. There will be no new loans. Loan extensions may be granted by contacting Jo via email: library@dsansw.org.au

Please return overdue items. Members who have unreturned overdue items will be expected to replace the item/s or pay for replacement copies.

Arabic speaking parents network: Eastern suburbs

Would you be interested to have contact with other parents who have children with special needs

Friday 19th April 2013
10.30 am - 12.30 pm
Suite 3, 1 Elizabeth Ave Mascot

• Arabic bilingual facilitator

Representatives from local services and, and opportunities for discussion about parenting, support, behaviours, developmental stages, supporting your child's development, services - what interests you.

Contact for more details: Inja Stacenski on 02 9662 7627 or Rosetta Kai Sung on 02 8344 2700

• Click here to download the flier in Arabic and English

Beyond the Square: Artspace 2013 exhibition opportunity

In 2013 Riverside Theatre and Beyond the Square are again opening up TWO opportunities for artists who identify as having disability to have their works exhibited in the foyer exhibition space at Riverside Theatres. Artists within their first 5 years of practice are strongly encouraged to apply.

Artspace welcomes the submission of artwork that is able to be hung, eg painting, drawings, animation, photography, mixed media.  

• Works must have been created after January 2011
• Artists must identify as having disability.
• Artists who have applied in the past and were unsuccessful are encouraged to apply again.

All applications must be accompanied by a maximum of 3 images and be received by email or post by 5pm Monday May 6th, 2013

(Almost) Wordless Wednesday: twins

What’s happening this Easter?

Well it’s that time of the year again when a bunch of generous and committed people drag old bikes out of the sheds, prepare them and get ready for another long ride in the red dust on the 2013 Scrapheap Adventure Ride - Back 'O' Bourke, 29th - 30th March 2013

This is the fourth event I have run to raise awareness and much needed funds for Down Syndrome NSW and in that time, Scrapheap Riders have raised over $150,000!!!

Your support has been greatly appreciated over the previous three Scrapheap Adventure Rides and this year is shaping up to be another cracker!!!

We have been blessed by everyone’s generosity and we would appreciate your support again this year.

To sponsor, please click this link and either sponsor a rider or donate to the cause.

Perry Gilsenan

Research news update #2 for 2013

Unraveling the molecular roots of Down syndrome
Heather Buschman, Beaker (Sanford-Burnham Science blog), 24th March 2013
What is it about the extra chromosome inherited in Down syndrome—chromosome 21—that alters brain and body development? Researchers have new evidence that points to a protein called sorting nexin 27, or SNX27. SNX27 production is inhibited by a molecule encoded on chromosome 21. 

Australian Down syndrome clinical study: Cognition and memory in people with Down syndrome
'A Phase 1b, Double-blind, Randomized, Placebo-Controlled, Parallel Group Study of the Safety, Tolerability, Preliminary Efficacy and Pharmacodynamics of BTD-001 in Young Adults and Adolescents with Down Syndrome'

Artist: Michael Jurogue Johnson

25th March 2013
Enrolling participants with Down syndrome aged 13 to 35 years old in Adelaide, Launceston, Melbourne, Perth, Sydney, and Wollongong. Sites in other locations are planned. Study site location information will be updated as it becomes available. Contacts in Victoria, South Australia and Western Australia are currently available on the study's website.
Monash University trial to test if cough mixture ingredient could help Down syndrome, Lucie Van Den Berg, news.com.au 25th March 2013

Down Syndrome Cognition Research 101: An Introduction
Down Syndrome Research and Treatment Foundation - World Down Syndrome Day Webinar, 21st March 2013
Scientists used to think Down syndrome was too complex a condition to treat. But thanks to the enormous strides researchers have made in the past decade, we now believe that it's not only possible to improve cognition through drug treatment, but that "we should look with real hope on the near future," as one leader in the field says — that the goal of improved learning, memory, and speech for people with DS may be within reach.

Study finds flashcards can help to teach spoken vocabulary

Down Syndrome Education International, March 2013
A research study, recently published in the Journal of Child Language, has reported that children with Down syndrome can benefit from the use of written words alongside pictures to help teach spoken vocabulary.

Down syndrome groups participate in Roche Advisory Board
Down Syndrome Education International, 12th March 2013
Earlier this week, DSE joined Down syndrome groups from around the world to discuss recent advances in research and clinical trials of pharmaceutical therapies that may improve learning and memory for people with Down syndrome.

Researcher finds exercise may be intervention for Down syndrome,
Sarah Auffret, Medical Xpress, 6th March 2013
Shannon D.R. Ringenbach, an associate professor of kinesiology in the School of Nutrition and Health Promotion, hopes to show that Assisted Cycle Therapy has the potential to improve the lives of people with DS. She has received a $150,000 grant from the Eunice Shriver National Institute of Child Health and Human Development to conduct the study.

Roche Research Sheds Light on Improving Neurological Deficits in Mouse Model of Down Syndrome, PharmaLive, 27th February 2013

Roche scientists, along with scientists at the University of Cantabria and Spain’s Cajal Institute, report findings in the Journal of Neurosciencea, which demonstrate that by selectively blocking specific receptors in the brain they were able to reverse key neurological deficits in a mouse model of Down syndrome (the Ts65Dn mouse). 

Lithium Improves Cognition in Down Syndrome Animal Model: Is It Viable for Human Trials?
Tom Valeo, Neurology Today, Volume 13 - Issue 4 - p 6–7  21st February 2013
doi: 10.1097/01.NT.0000427571.74729.3e
Lithium seemed to improve memory and cognition in an animal model of Down syndrome. But several commentators noted that although the results are encouraging, safety concerns with lithium need to be addressed before applying to human trials of Down syndrome.

Mamre Magic: Try new things day

A day of activities for people of all ages and abilities in the magical rural setting of Mamre House at St Marys

Thursday, March 28, 2013
All welcome to join in the fun and have a go at something new.

The cost is $15 per person for 3 activities and a light lunch can be pre ordered for $8

To make a booking please phone 9670 5321. Booking is essential.

Click here for program

Puberty, Sexuality and Relationships: FREE forum for parents and carers of children and young people with intellectual disability in Lismore

These free forums are very popular:

Find out how to support your family member’s personal development and sexuality in a positive way.

• Issues around sexuality and disability
• Tips for talking about sex and answering tricky questions
• Preparing for puberty changes
• Decision making and safety
• Books, DVDs and resources
• Experienced presenters to answer your questions
• Meet other parents
• Free resource bag

Parents, foster parents, relatives and other unpaid carers of people with disability are welcome. This forum is not intended for service providers (please contact Family Planning NSW for information regarding professional education). We regret we are unable to provide respite/ childcare.

6.00 pm - 8.00 pm, 22 April 2013

Multitask, 296 Molesworth Street, Lismore NSW 2480

For more information or to register contact Danielle Fehir, Family Planning NSW T: 02 8752 4388  F: 02 8752 4396 E: daniellef@fpnsw.org.au

Go to the Family Planning NSW website for updates and further information

Weekend reading and viewing: 23rd - 24th March 2013

Carrie Bergeron - Advocate and Motivational Speaker, VeccVideography, posted on Vimeo 8th March 2013. Carrie  Bergeron is a 36 year old woman with Down Syndrome who has made it her life's work to give back to a community that supported her through her early years. Dr Brian Chicoine, Director of the Adult Down Syndrome Clinic in Chicago, wrote in introducing the video on the Clinic's Facebook page ... 'From time to time I get asked what I do to promote people with Down syndrome. My answer is, "That isn't my job. My job is to help people with Down syndrome be as healthy as possible so they can optimally speak for themselves". It is not only the right thing to do, but people with Down syndrome can promote themselves better than I can ... through words, dance, actions, kindness, or however their gifts are expressed.' 8m 49s

Thin Places, Amy Julia Becker, 14th - 21st March 2013.  Amy Julia Becker presents a series of posts, some written by guest bloggers around the globe, to mark World Down Syndrome Day this week.

A young man with Down syndrome, a fatal encounter and a cry for understanding, Lawrence Downes, New York Times, 18th March 2013. You may not have heard of Robert Ethan Saylor, but his death in January should inspire something more lasting than a small-town police investigation.

Acceptance, Jennifer Crowson, Down Syndrome Research Foundation (blog), 15th March 2013 What do you say to people who see you are pregnant and congratulate you and talk about how excited you must be – when actually you are still coming to terms with being told your baby will not be what you expected? I think every parent does and should handle this in his or her own way; here is how I came to accept and embrace the fact that our son had Down syndrome.

Take off the blindfold, Paula Kluth, paulakluth.com, 16th March 2013 Disability awareness lessons done right can help teachers do this. Unfortunately, most disability awareness activities are not done right. (Third on a series on inclusion in school)

DisabilityCare: a bad name but a good direction, Stella Young, Ramp Up, 22nd March 2013. The NDIS will now be known as DisabilityCare. It's a terrible name, but at least we are now on the path to providing better services for Australians with disabilities
PWDA E-Bulletin, Edition #82, People With Disability Australia, 15th March 2013. Highlights for this March E-Bulletin include the four social media forums run by the PWDA Board, which fed into policy responses on the NDIS legislation, the NDIS rules, a review of the NSW Disability Services Act and employment issues.

Scrapheap Adventure Ride 2013: one week to go!

The 2013 Scrappers are just about ready ... they will arrive at Comeroo Station (out the back of Bourke) on Friday 29th and Saturday 30th March, just a week away.  They will be welcomed in the towns and regions they ride through, and will spread awareness about people with Down syndrome as they cross NSW.

They have spent months preparing their bikes, planning the trip and setting up fund-raising activities - you can support them by sponsoring  one or more teams here. The total raised so far is nudging $25,000 !

Here are a couple of the guys featured on the Scrapheap Adventure Ride 2013 Facebook page this week - like the page to keep up with final preparations and to follow the great ride:

Mike Harding with the '99% ready' PE400

Mark Victor plans to ride up to Comeroo from Bendigo!

And remember, this Sunday you can support the 2013 Scrapheap Adventure Ride in the comfort of the North Manly Bowling Club, without having to build a bike, or trek to outback NSW!

Aging and Down syndrome: a health and wellbeing video and guidebook

On 19th March, the (US) National Down Syndrome Society, based in New York presented its monthly webinar - the topic was Aging and Down syndrome, presented by Dr Julie Moran, a geriatrician specializing in older adults with intellectual and developmental disabilities (I/DD). Dr. Moran is on faculty at Harvard Medical School and Beth Israel Deaconess Medical Center in Boston, MA.

The webinar can be viewed online here (1 h 2m 28s).  Links are also provided to the slides from the presentation, and to view the new NDSS publication Aging and Down syndrome: a health and wellbeing guidebook, by Julie Moran DO.

Sen Jan McLucas on World Down Syndrome Day and the NDIS becoming law today

Joining in the celebrations for World Down Syndrome Day

Media release, 21 March 2013

Parliamentary Secretary for Disabilities and Carers, Senator Jan McLucas is today celebrating World Down Syndrome Day.

World Down Syndrome Day, held on 21 March each year, is a United Nations sanctioned day which provides an opportunity for people to learn more about Down syndrome and to recognise the contribution people with Down syndrome make in our society.

Senator McLucas said that today was a great opportunity for people in Australia—and beyond—to take the time to become more aware about Down syndrome.

“World Down Syndrome Day is a time to recognise and celebrate the contributions people with Down syndrome make to our community,” Senator McLucas said.

...  “In a truly historic moment, the NDIS Bill has passed the House of Representatives with a unanimous vote, and has this morning passed into law.

“The National Disability Insurance Scheme Bill brings us one step closer to ensuring that all Australians have the support they need to reach their full potential.”

World Down Syndrome Day: launch of Down Syndrome Australia website

Down Syndrome Australia was formed in 2011 by the eight State and Territory Down syndrome associations to provide a strong united voice to address the needs and aspirations of people with Down syndrome and those that support them..

The Down Syndrome Australia website launch was timed for World Down Syndrome Day 2013 - we look forward to its continued development, and greater access to collaboration, information and support on issues of national importance ...

The website will also link to each state and territory Down Syndrome association website, ensuring people with Down syndrome and their families stay in touch with local news and events. Further features will be added to the DSA website over the coming months.

• Down Syndrome Australia on Facebook

Have a memorable World Down Syndrome Day, however you chose to celebrate or acknowledge it. ... your photos from WDS Day 2013 events are welcome, if you would care to share them.  Please send them to blogeditor@dsansw.org.au

Some international events will not happen until tomorrow, Australian time:

• The second UN World Down Syndrome Day Conference 2013 will be live streamed from New York
• A room of golden shells: 100 works by artists and writers with Down syndrome, edited and published by Woodbine House will be launched in the US. Woodbine House does accept orders from individuals inAustralia, but the book is listed for pre-order at The Book Depository.

Survey: What will make the NDIS work best in rural and remote areas?

People With Disability Australia, the National Disability and Carers Alliance (NDCA) and the National Rural Health Alliance want to find out “What will make the National Disability Insurance Scheme work best in rural and remote areas?”

© Ilia Torlin | Dreamstime.com

• You can participate by completing the online survey.

• Discussion paper on Issues relating to the NDIS in rural and remote areas of Australia, released by the National Rural Health Alliance 21st February 2013. Feedback is invited via comments to nrha@ruralhealth.org.au

T4321 events around NSW ... you're welcome!

You know that Thursday 21st March (that's tomorrow!) is World Down Syndrome Day ... people across NSW will gather over the next few days to celebrate the people with Down syndrome in their lives and communities over morning/afternoon tea.  The organisers of these events have asked us to issue an invitation to all ... let us know if you would like your event listed here, or on our Facebook page (email blogeditor@dsansw.org.au)

Christian Swan's T4321

Date: Friday 22^nd March

Time: 10:30am

Location: 21 LillyPilly Close, Medowie NSW

North Coast T4321

Date: Thursday 21^st March

Time: 10:00am

Location: Multitask Molesworth at Lismore

AGD T4321

Date: Thursday 21^st March

Time: 10:00am

Location: Attorney-General’s Department
3-5 National Circuit, Barton ACT

Let’s have some fun for T4321

Date: Wednesday 20^th March

Time: 12:00pm

Location: Lifestart Nepean

Maree’s T4321

Date: Thursday 21^st March

Time: 8:45am

Location: St Joseph the Worker Primary School- Auburn

Contact Priscilla at Down Syndrome NSW on 02 9841 4404 or 0402 503 885 or Priscilla@dsansw.org.au with any enquiries.

What's in a name? NDIS or DisabilityCare?

Yesterday's announcement:

Insurance scheme renamed DisabilityCare
Michael Gordon, Political editor, National Times (Fairfax), 18th March 2013

The National Disability Insurance Scheme will be given the name DisabilityCare Australia on Monday, before legislation to establish the scheme passes through Parliament.

''We think that given Medicare is so well understood, DisabilityCare is the right name for it,'' Julia Gillard told Fairfax Media. The Prime Minister insisted her government would find the savings to support both the scheme and the Gonski plan to improve the nation's schools.

''I've always said there will be some hard choices in doing that, but at the end of the day the government's budget is a reflection of our nation's priorities and our nation's choices,'' Ms Gillard said.

''I think these things - better schools, better support for people with disabilities, better insurance for everyone against the prospect that they or a family member could have a disability - need to be high priorities and other things need to give way for them.''

The scheme will be launched from July.

Reactions:

Is the new name 'DisabilityCare' set in stone as THE National Disability Insurance Scheme name? 
Sam Connor, Your Say - NDIS, 18th March 2013

There's been quite a lot of negative feedback about the proposed new name for the NDIS this morning.

We understand that the idea was to reflect what it is about - disability + care and support = disabilitycare and also to reflect the Medicare brand. But in the disability sector, the word 'care' holds different connotations. It reflects a charity or medical model approach rather than a social approach, and not an entitlement model. 'We're going to care for you, you poor things.'

Probably not the intent, but that is what is being heard. Not everyone agrees with this - some parents have said 'we don't care what it is called, as long as we're supported'. But others say its not the disability that's being supported, its the person and their life.

Do you agree? Does the new name reflect the intent of the NDIS, or not?

You can comment on this web page, Your Say - National Disability Insurance Scheme, to give your response. *** This page has been removed overnight from the Australian Government's NDIS website, without explanation. Further comment is likely to appear on Ramp Up. Added 20/3/2013.

• Disabled pan NDIS rebranding, Sky News, 19th March 2013
• National Council on Intellectual Disability statement: Dignity, Respect and Citizenship or charity, welfare and little else! 19th March 2013

Disability Support Organisation for the Hunter: April workshops

It’s all about me!
How do we ensure people with disability and families have choice and control over their supports and their lives?

Workshop dates and locations:

1. Charlestown, 6 – 9:30 pm Wednesday, 3 April.

2. Maitland, 9.30 am – 1 pm Tuesday, 9 April

3. Waratah, 9.30 am – 1 pm Wednesday, 10 April.

• All workshop details are available online here

World Down Syndrome Day 2013 video

Down Syndrome International presents the Global Video Event "Let Us In - I Want To Work!" in partnership with 62 countries for World Down Syndrome Day 2013. Please watch this video and help us create a single global voice for advocating for the rights, inclusion and well being of people with Down syndrome on 21 March.

Down Syndrome International announces recipients of 2013 World Down Syndrome Day awards

On Friday 15 March 2013, ahead of World Down Syndrome Day on Thursday 21 March, Down Syndrome International (DSi) is delighted to announce the recipients of the 2013 World Down Syndrome Day Awards.

2013 is the fourth year of the World Down Syndrome Day Awards, presented to individuals or organisations whose voluntary, professional or scientific activities have strengthened and enriched the lives of people with Down syndrome, or contributed to scientific advancement related to Down syndrome.

Voluntary and Professional Awards

1 individual with Down syndrome receives an award for outstanding self-advocacy:
Karen Gaffney (USA) – Long distance swimmer, motivational speaker and President of the Karen Gaffney Foundation. Karen advocates for the inclusion of people with disabilities in all walks of life, offering motivational workshops and inclusive programmes.

1 individual receives an award for outstanding voluntary activities:Mr Ratnasabapathy Sivanandam (Singapore) – Co-Founder of Down Syndrome Association (Singapore), who has led the organisation of many important initiatives and events in Singapore and Asia including Asia Pacific Down Syndrome Conference, World Down Syndrome Congress and World Down Syndrome Day.

Scientific Awards

3 individuals receive awards for outstanding contribution towards scientific advancement related to Down syndrome:

Professor Tony Holland (UK) – Chair of the Intellectual and Developmental Disabilities Research Group, University of Cambridge, whose pioneering work includes extensive research on the relationship between Down syndrome and Alzheimer’s disease.

Dr Zan Mustacchi (Brazil) – Medical and Paediatric Geneticist, Genetics Department at Darcy Vargas Children’s Public Hospital in Sao Paulo, and Founder Member of Brazilian Federation of Associations of Down Syndrome who he represents on the National Health Council.

Professor Marie-Odile Réthoré (France) – Medical Director of Institut Jérôme Lejeune who collaborated with Professor Lejeune and who has dedicated a lifetime to the medical care of people with Down syndrome and scientific research.

All recipients are invited to a formal presentation of World Down Syndrome Day Awards for the years 2013-2015 taking place at the 12th World Down Syndrome Congress (WDSC) in Chennai, India in August 2015.

Resourcing Families workshop: The Role of Paid Support

• Download a detailed flier and registration form

Weekend reading and viewing: 16th - 17th March 2013

Yes, I am one f those parents, Bec Oakly, snagglebox, March 2013 Asking for the things our kids need and being persistent until we get those things is not designed to make anyone’s life harder. It doesn’t make us difficult or troublesome or demanding, it makes us good parents who want our kids to have the things they need. We want to solve problems, not create them.

Missing Out on Beautiful, Amy Julia Becker, Huffington Post, 13th March 2013... just as I don't know how to tell photographers the way to capture her smile, I don't know how to tell the social bystanders the way to capture an accurate portrait of our family.

New prenatal screening test for Down syndrome raises questions, Leisa Scott, The Courier-Mail (Brisbane), 9th March 2013. Abridged online version - the full feature was published in the print edition.

The weird and wonderful story of the disability rights movement, Sarah Barton, Ramp Up, 7th March 2013. Film-maker Sarah Barton is completing a feature documentary on the history of disability activism and neither she nor we could wait to give you a sneak-peak at the facts she's unearthed. Over the next couple of weeks, we'll look at the origins of the disability rights movement.

Winning artwork to be sold in studio fundraiser, News Local - The Hills, 7th March 2013.  Fabulous photo of Emma Brodie with her award winning artwork for the Studio ARTES exhibition Botanical ARTES.

Louisville teen to receive national 'Champions of Change' award in DC, Kimberli Turner, Colorado Hometown Weekly, 7th March 2013. Connor Long acts as a role model to other kids with disabilities, teaching them about the full life he leads and his advocacy. The National Down Syndrome Society will present Connor Long with their  'Self-Advocate of the Year' award March 13.

Opening Higher Ed to Students with Developmental Disabilities, Jasmine Evans, Diverse - issues in higher education, 10th March 2013. College can be a safe space for people, young and old, to learn and grow. Through programs like the Academy of Inclusive Learning and Social Growth at Kennesaw State University (KSU), youth with developmental disabilities now have the option to experience college. These students have health issues like autism, Down syndrome, cerebral palsy, and specific learning disabilities.

 A special way to dance, Samantha Gardiner,Weekend Sunrise, 9th March 2013. Special Olympics dancers prepare for  their performance at the opening of the Asia-Pacific Games in Newcastle in December 2013.

Video of Lauren Potter's address to the Arc of Greater Twin Cities Gala, in Minneapolis Minnesota, USA 15th February 2013. On her role in the TV series Glee, and the profile it has given her to advocate against bullying of people with disabilities. 11m 56s.

NDIS Bill passed in House of Representatives 14/3/2013

Just in case you missed the news yesterday ...

The House of Representatives has passed legislation to set up the Government's National Disability Insurance Scheme (NDIS).

The bill, which will allow the scheme to be launched from July, passed with the support of all MPs.

... The legislation will now go before the Senate, where it is expected to pass with support from Labor, the Greens and the Opposition. .... ABC News full report here.

Scrapheap Adventure Ride

Perry Gilsenan (Scrapheap Adventure Ride Boss): A great fundraiser arranged by Peter Scrivener so come along and bring ya mates. I will have my XR460/4 there as will Mike Harding and his PE400. North Manly Bowling Club is donating venue and the bands donating their time.

• Scrapheap Adventure Ride 2013:  29th - 30th March 2013,  to Comeroo Station, NSW
• Scrapheap Adventure Ride 2013 on Facebook

Library Thursday: 'How to Break Bad News'

Our post about Breaking Bad News in November 2012 was widely read, so we expect that the book, newly arrived in the library will also be popular:

How to Break Bad News to People with Intellectual Disabilities: A Guide for Carers and Professionals, Irene Tuffrey-Wijne

“This book offers unique and flexible guidelines that can be used by practitioners to ease the process of breaking bad news to people with intellectual disabilities. The guidelines, which are adaptable to individual communication ability and level of understanding, address the many complex needs of people with intellectual disabilities who can find understanding and accepting news that has a negative impact on their life a very difficult task.

In the book, Irene Tuffrey-Wijne covers a range of different types of bad news, from bereavement and illness to more minor issues such as a change of accommodation, and offers highly practical and effective tips that will help carers and practitioners ensure that bad news is relayed as sensitively and successfully as possible. An easy-to-use and comprehensive guide, this book will be an invaluable resource of information for carers, health professionals such as doctors and nurses as well as families of people with intellectual disabilities.” – Jessica Kingsley Publishers

Down Syndrome NSW members can negotiate a library loan by contacting Jo at library@dsansw.org.au

• Breaking Bad News website

Important survey on development in young people with Down syndrome

Information about, and the link to the Study on Development in Children and Adolescents with Down syndrome was posted by the Adult Down Syndrome Clinic  (based in Chicago) yesterday (13th March 2013). 

We are aware that similar phenomena have been observed amongst a small number of young Australians with Down syndrome, generating the same concerns among their physicians.  

The online survey is open to international participants.

The Adult Down Syndrome Clinic wrote:

We have a small subset of patients who have declined is skills at a young age- usually adolescents-teens to early 20's. It isn't many, but it is a challenging problem. We have participated in many discussions with other practitioners who also have a small number of patients in their practices. We also recently particpated in an international teleconference on the subject. There remain many gaps in the knowledge about these individuals and why this has occurred.

This post is about a study on the development in children and adolescents with Down syndrome. One of the particular interests behind the study was to further learn about the above-mentioned individuals.

Whether your son or daughter has experienced a decline in skills or not, your participation in this study will be helpful.

Please review the information below:

Study on Development in Children and Adolescents with Down Syndrome

(The study has been IRB approved through Vanderbilt University) 

We are interested in knowing about the course of development of your child with Down syndrome. Development does not always proceed through a smooth course. Life experiences and certain behaviors may have influenced the course of development of your child with Down syndrome. We are particularly interested in knowing about those children who have experienced set-backs in development that are either temporary or long-lasting. We are also interested in knowing how many children, adolescents and young adults show behaviors that may interfere with their development.

We are asking that parents of children with Down syndrome who are between the ages of 5 and 30 years take time to answer our questions about their child’s development. The survey will take between 30 and 45 minutes to complete and all responses to questions will be anonymous. We do not collect any identifying information and we cannot trace responses back to an email address. 

Your answers to the questions on the survey will be helpful in understanding how individuals with Down syndrome vary and how behaviors and experiences influence development. 

If you have questions about this study you may contact Dr. Devenny , an investigator, at DStransitionsurvey@gmail.com or the (US) toll-free number 1-855-784-6489.

This research is being conducted by:
New York State Institute for Basic Research in Developmental Disabilities: 
Darlynne Devenny, Ph.D., Karen Amble, M.S.W., Anna Matthews, M.Sc. 

Vanderbilt University Kennedy Center:
Robert Hodapp, Ph.D., Elizabeth Dykens, Ph.D., Richard Urbano, Ph.D.

We are grateful to all who agree to participate. You can find the survey at
www.surveymonkey.com/s/DStransitions

Amendments proposed to NDIS legislation following consultations

Dan Harrison reports on the Sydney Morning Herald today that a number of amendments the National Disability Scheme legislation are to be introduced by Labor on today, including one that will be important to older people with Down syndrome:

... an amendment to make clear that a person receiving support under the scheme will be able to choose to remain in the scheme after they turn 65. 

The government has accepted the Productivity Commission's recommendation that people not be able to enter the scheme after the age of 65, to avoid duplication with the aged care system. 

Ms Macklin said the amendments responded to feedback received from people with a disability, their families and carers and from states and territories. 

A Senate committee which has been examining the legislation will table its report on Wednesday. The government hopes to pass the legislation through both chambers of Parliament by the end of next week.

Read more here, in the Sydney Morning Herald

• Minister's Press Release on the amendments, 13/3/2013

PODD workshop for parents and professionals: Ashfield

 9 am - 5 pm Monday, 25th March, 2013

Wests Ashfield Leagues Club, Ashfield 

Morning tea and lunch included. 

Free for Pathways parents and carers. Professionals: $200

Details of the event and about the presenter: 

Pathways Early Childhood Intervention Inc

RSVP is essential. Please confirm attendance before Friday 15th March, 2013. 

Please call Elif on: 9552 8840 or email: elif@pathwayseci.com

• Information about other Pathways ECI events

T4321 in the Illawarra

Unfortunately, the World Down Syndrome Day High Tea previously advertised to be held in Wollongong has been cancelled because of low bookings ... so Sandra Biggs has offered a generous invitation to her home:

Hello to all my fellow "Southerners" of the Illawarra!

Due to the High Tea not going ahead, I thought I would offer an alternative to those who wanted to partake in some light hearted banter, tea and yummy nibbles!

I personally also see this as a way to start forming networks in the Illawarra with the view to possible service provision in the future.

I will be holding a T4321 Morning Tea at my house on 21st March 2013 and would love to meet you all!

See you anytime between 10:30am and 1:30pm at

18 Norman Street
Fairy Meadow

If you have any questions, please contact me on 0401 317 571

Would appreciate it if you would bring a plate (NOT a big one though) with some sort of "nibbles" on it!

Thank you all in anticipation of your attendance and I look forward to meeting you.

There will be information regarding local services available along with details about DSNSW services and how to donate if you would like to.

Warmest wishes
Sandra Biggs

Creating connections in arts and disability

Northern Rivers Echo 

11th March 2013

For people living with a disability in a rural region, having a place where your voice can be heard and your needs respected is pretty important.

Now, a new website has been created as a central information hub, gig guide and blog to give opportunities for people with disability to fully experience and participate in the arts.

The website is a project of Accessible Arts NSW and Julie Barratt, Accessible Arts North Coast manager wants people to contribute to it and help promote accessible venues and activities happening in the local area ... read the full Northern Rivers Echo article here.

• Creating Connections website
• Creating Connections on Facebook (check out the photo of the newly renovated Lismore Art Space!)

NSW Ageing, Disability and Home Care: service charter and survey

From the ADHC news website

Draft Services Charter
We have released our draft Ageing, Disability and Home Care (ADHC) Service Charter which outlines the standard of service that people can expect from us.

• Download the draft Service Charter in English, Easy English and many other community languages here.

What do you think about ADHC’s services?
We would like to hear from people accessing ADHC supports and services, their families, carers, guardians, advocates, ADHC staff, NGOs and their staff via the feedback survey on the draft ADHC Service Charter.

• The survey can be completed online or in print - further information and links are available here

Chief Executive’s Keynote Speech to the NDS State Conference
On Monday 11 February 2013 Ageing, Disability and Home Care’s Chief Executive, Jim Longley, delivered a powerful speech to the National Disability Services State Conference.

Titled, It’s Time to Shine – NSW Leading the Transformation of Disability Services, the speech outlined the NSW Government’s vision for a disability system in NSW that is based on self directed supports and individualised budgets.

• The full transcript can be downloaded from here.

Low muscle tone and infant feeding - questions and answers

Jennifer Bekins follows up her recent Talk - Down syndrome post Pre-feeding Exercises for Children with DS: A must? with an excellent discussion on low muscle tone and infant feeding: 

Does low-tone mean my infant will have feeding problems?

Since my post on pre-feeding exercises I’ve had some really good questions.

• What do you do for tongue thrust?
• What about drooling?
• How do you address low-tone and feeding? Exercises?

I want to take time and answer all of these, but today I will focus on low-tone, feeding, and children with DS ... read on here, at Talk - Down syndrome


Edited 15/3/2013 to add:
Today Jennifer has reprised and updated an older post on bottle feeding babies with Down syndrome - an excellent companion piece to the post on low tone and infant feeding -  Bottle feeding a baby with Down syndrome.

New school year ... new resources on offer

By this time in the new school year, six weeks or so in, students, teachers and parents all have a better idea of just what support is needed, how it might be implemented, and where any gaps in their own knowledge are ... so it's a good time to track down resources and events that are a good fit.  Here are some suggestions for this school year:

Playing to their strengths -  a workshop for teachers and other school personnel, offered by Down Syndrome NSW, on Wednesday, 3rd April 2013 at Rosehill.  Registrations close 27th March.

 Open books open doors is a blog dedicated to research and practice about people with Down syndrome learning to read.  A new series of posts on reading comprehension has recently started.

The Down Syndrome Association in London launched a collection of new resources about schooling and learning last year - while there are, of course references, to the British curriculum, education practices and law, much of the content is of universal interest. The print information is available to download free online:

• Primary Education Support Pack
• Secondary Education Support Pack

Good practice guidelines for education - new report, published by the UK All Party Parliamentary Group on Down Syndrome, was launched at a reception in the House of Commons in March 2013. The report offers guidelines on education for children and young people with Down syndrome aged from birth to 25 years. This Down Syndrome Education International news page summarises the principles laid down in the document and provides a link to it.

The inclusive class - a website 'for parents and teachers dedicated to providing resources to create the best possible learning environment for children with special needs.'

Spectronics offers teachers online training in technology, and a range of both online and face-to-face services.

Weekend reading and viewing 9th - 10th March 2013

How to teach chores to your special needs child, Karen Wang, Friendship Circle, 3rd July 2013

Fine Motor Skills: 30 Materials and Activities, Jamie Reimer, Hands On As We Grow.

Personalisation: how to avoid snatching defeat from the jaws of success, Martin Routledge, In Control (UK), 1st March 2013. Open letter to a UK Government Minister, recommended by Jackie Softly (DSWA), who says, 'Some points in this UK blog ... are very relevant to us here in Australia as we move towards an NDIS and greater self-direction.'

Crumbs,  A Typical Son, 1st March 2013. I am compelled to write yet again about my feelings/thoughts/beliefs regarding the recent “Feel good-Inspirational” stories trending on social media that concerns ‘how somebody without a disability did a nice thing for someone with a disability’.

Self-injurious behaviour in children with an intellectual disability, Prof. Chris Oliver, Dr Louise Davies and Dr Caroline Richards. Cerebra Centre for Neurodevelopmental Disorders, University of Birmingham, 1st March 2013. This briefing has been written to help parents and carers of children with an intellectual disability to understand what self-injury is, what the causes are and which interventions are effective. The briefing focuses on children with profound to moderate intellectual disability, who may also have autism spectrum disorder or a genetic syndrome.

Improving arts employment for people with disability, Andrea Lewis, Arts Hub, 1st March 2013. The lack of inclusive and accessible employment for people with disability is of ongoing concern in Australia. Australia ranks a mere 21 out of 29 OECD countries in employment participation rates for people with disability.

Will you help me spread the word?, Tesney Davis, Our Eyes Opened, 5th March 2013

Couple Refuses to Give Up on Love Despite Disabilities, Katie Couric, Katie,(US) ABC TV. Interview with Shelley and Bill, who were also featured in this print interview.

HIgh Tea 4 321 events: Sydney, Illawarra, Hunter

World Down Syndrome Day is fast approaching and to celebrate this glorious day, 

Down Syndrome NSW is hosting a series of High Tea events throughout NSW.

For bookings and further information please contact
Michelle or Siena at Down Syndrome NSW on (02) 9841 4444.

We look forward to sharing this day with you.

'Swimming superfish': Today Show

The Today Show (Channel 9) featured a great report yesterday about Queensland swimmer, Clinton Stanley, who has set dozens of world records in Down Syndrome International Swimming Organisation championships.

'Work hard and do your best at all times,' is Clinton's advice to others - a great role model for anyone.

Earlier stories about Clinton Stanley:

• Team Australia in Italy for international swim meet (2012)

• A very active life (2011)

2nd Down Syndrome National Swimming Championships, September 2013, Sydney