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

DSRF blog added to our 'must reads'

We've just added the Down Syndrome Research Foundation's blog to the list of those we read regularly (scroll down the right hand column of this page). The Foundation is located in Vancouver.

DSRF blog posts are not all about research (in fact most of them aren't) - they cover a range of topics of interest to families everywhere, who have a member with Down syndrome of any age.  We have occasionally posted links in our regular Weekend reading  posts, and the quality of the posts like these two recent ones will show you why we think a permanent link is a good idea:

• Martial Hearts
• From one parent to another: we need to get a life 

Enjoy reading the DSRF blog often, and/or follow them on Facebook.

Library Thursday: a review and a sale

• Elizabeth Millard has reviewed When Down Syndrome and Autism Intersect (Woodbine House, 2012) for ForeWord reviews:

Many helpful books have been written about Down syndrome, and also about autism, but this incredibly useful guide for parents and professionals is one of the first to describe the unique challenges that come with a child who is diagnosed with both. ... read more here. 

Down Syndrome NSW members can borrow the book from our library.

• The Down Syndrome Education USA store is offering a number of resources on sale in the lead up to World Down Syndrome Day.

Mind your language

6th March is an annual day of awareness in the US about the use of the word 'retard(ed)' as an insult. Spread the Word to End the Word is an initiative of Special Olympics, addressing the larger issue of the intent of the speaker, and the hurt caused to a whole population, whether intended or not. 

Here are some examples of recent media that look at why both the colloquial use of the word itself, and the vilification of a population are unacceptable:

John McGinley on the 'r' word, Everyday Dish, KDVR Fox 31, 1st March 2013 

A Word Gone Wrong, Lawrence Downes, New York Times, 2nd March 2013

Stopping The R-word Is Not Enough: Culture - Not Just Language - Must Change, Meghan Morris, Huffington Post, 22nd February 2013

Quiz: Do you get why this word hurts so much? Love That Max, 6th March 2013

• A post from last month, on responding to such an insult 

Twenty Years of Disability Discrimination law

Celebration and commentary on twenty years of  disability discrimination law in Australia:

Twenty Years: Twenty Stories: celebrating 20 years of the Disability Discrimination Act
Twenty years ago, life for millions of Australians got easier. The then Deputy Prime Minister in the Keating government, Brian Howe, introduced an Act that would, for the first time at a national level, make it unlawful for people with disability to be discriminated against. The Disability Discrimination Act 1992 (Cth), became Australian law on 1 March 1993.

Twenty Years: Twenty Stories marks the Disability Discrimination Act's twentieth birthday with twenty inspiring stories on film.

• Governor-General Launches Twenty Stories, Human Rights Commission, 5th March 2013

• Strengthening Australia's Disability Laws,  Damien Carrick, Law Report, Radio National, 27 February 2013 

• Australia's DDA: not the sharpest tool in the shed, Rick Randall, Ramp Up 28th February, 2013


• The DDA: don't play down the law, Jennifer Morris, Ramp Up, 5th March 2013

Employment opportunities for people with disabilities

Two Australian Disability Enterprises have recently let us know that they have supported employment vacancies for people with disabilities in a variety of businesses and locations. Visit their websites for information about the work offered and employment eligibility:

• Disability Services Australia has vacancies at Mascot, Condell Park, Seven Hills and Braemar.  Call 1300 372 121 or serviceaccess@dsa.org.au

• Ozanam Industries has vacancies at West Ryde and Stanmore. Call Geordie at Stanmore Work Centre on 02-9126 7903 or email geordie@ozanam.org.au; or call Sunitha at West Ryde Work Centre on 02-9126 7935 or email sunitha@ozanam.org.au to arrange an appointment.

Accessible Arts e-Newsletter: issue 1, 2013

The first issue of Accessible Arts NSW e-newsletter for 2013 is now available online.

It is, as always, full of news, events, classes and opportunities across a full range of art forms, right across NSW.

Accessible Arts is the peak arts and disability organisation across New South Wales.

Accessible Arts promotes and provides opportunities for people with disability to participate in arts and cultural activities either as audience members; through attending galleries, theatres, museums and festivals; or as participants in art, drama, music, dance and multimedia activities; and by developing as professional artists.

Results of survey on 'Parents and caregivers' experiences surrounding diagnosis of their child's genetic condition'.

The results from a survey conducted in 2012 by a collaborative international team, including researchers at the University of Newcastle (NSW) are now available in a preliminary, unpublished report, Parents and caregivers' experiences surrounding diagnosis of their child's genetic condition.

We have the researchers' permission to publish the link, with the rider that ... this is unpublished data and cannot be used without the written permission of Dr Linda Campbell. 

Contact details are on the study website.

Aspire parent workshop: how to teach children with additional needs to use visual and written schedules

How to teach children with additional needs to use visual and written schedules
14th March 2013

6:30 - 8:30pm

Aspire Early Intervention
Suite 107, 3 The Crescent
Wentworth Point (Homebush)

After the presentation there will be an opportunity to ask questions about how to implement a schedule with your child.

$30. Places are limited, so if you would like to attend please email sarah@aspireearlyintervention.com or call Aspire on (02) 9739 9798

Details about this event: Visual Schedules Workshop


Information about other Aspire workshops:

Shadowing workshop - a comprehensive workshop for therapists and parents 
21st March 2013

5:30 - 8:30 pm
Wentworth Point (Homebush)

Parent Information Evening - for parents of children with developmental disorders
Friday, 12th April  2013 

5:00 - 7:00 pm
Liverpool

Weekend reading and viewing: 2nd - 3rd March 2013

Tied Up,  Erica Vogel and Mehul Shah (producers). A random act of kindness makes a man late for his Valentine's Day date, but makes him a hero in his lover's eyes. This short film is part of the prestigious 50 Kisses Film Festival, and has its own Facebook page, where you will find more pictures and information about its production and success.

No second chances with the NDIS, Samantha Jenkinson, Ramp Up 25 Feb 2013

Up with Down Research  A mother challenges assumptions about Down syndrome,  David Menoni, Tufts Magazine (Tufts University), Winter 2013

Should You Get Your Child With Special Needs A Cell Phone? Valerie Strohl, Friendship Circle, 26th February 2013

Performer's uncommon, gentle nature is no act, Fred Dickie, U-T San Diego 24th February, 2013 2013

AAC Boot Camp Poster, Created by Lauren Enders with content by Lauren Enders, Pat Mervine, Melissa Skocypec, & Cathie VanAlstine - February 2013 A one page poster to support AAC implementation in classrooms and at home, regardless of AAC system used (no tech, low tech, high tech) or skill level. (Thanks to Hands Can Talk for the link).

A child with Down syndrome changes a family forever! Thomas Balsamo. World Touch Productions for Gigi's Playhouse, published 24th February 2013.  One of the best photomontage/videos around, just 1m 30s. (Thanks to Gemma Ward for the link)

Events in March 2013

Twenty Years: twenty stories launch
Australian Human Rights Commission, online
1st March 2013

Spectronics iPad workshops for teachers
Brisbane, Cairns, Sydney, Melbourne, Hobart, Adelaide, Perth, Auckland

March and April 2013

Aspire Early Intervention workshops for parents and professionals
Homebush and Liverpool
March and April

Creating Community Connections
Webinar
6th March 2013, repeated Tuesday 19th March 2013

Bengali parents support group
Eastern Suburbs (Eastlakes)
6th March 2013

IDEAS artist callout

Newcastle

Submissions close 7th March 2013

Creative Programs Network 2013 launch
Walsh Bay
7th March 2013

NSW Disability Services Act Review – consultation 

Penrith
11th March 2013


Sutherland Shire and St George coffee morning
Hurstville
11th March 2013

Unlocking Potential

Brisbane
14th March 2013

NSW Carers Conference
Sydney
14th - 15th March 2013

Individual and Agency Transformation
University of Sydney
20th - 21st March 2013

World Down Syndrome Day
International
21st March 2013

T4321
Across NSW
Around 21st March 2013

More Choice and Control
Ryde 

21st March 2013

High Tea at Old Government House (Down Syndrome NSW event)
Parramatta
23rd March 2013

Key Word Sign NSW: workshop
St Marys
23rd March 2013

Vietnamese speaking parents support group
Eastern Suburbs (Alexandria)
25th March 2013

Scrapheap Adventure Ride
Comeroo Camel Station, 150kms North-West of Bourke
29th - 30th March 2013

Playing to their strengths (Down Syndrome NSW event)
Rosehill
Registrations close 27th March 2013

Vietnamese speaking parents network: Eastern Suburbs

A local support group: 

Monday 25 March 2013 10.30am to 12.30pm

South Sydney Community Aid and Multicultural Neighbourhood Centre  

73 Garden Street

Alexandria NSW 2015 

02 9319 4073                      

Bilingual Vietnamese Facilitator: Vi Pham, Eastern Sydney Multicultural Access Project

A LOCAL NETWORK FOR VIETNAMESE SPEAKING PARENTS

Would you be interested to have contact with other parents in the Eastern Suburbs who have children with special needs?

It would be an opportunity for sharing information, with discussion in Vietnamese on what you’d like to know more about to help support your child and family.

Discussion about services, different agencies, choices on what interests you, such as, parenting, support behaviours, development stages, supporting children with development.

Meet with representatives from Autism Spectrum Australia and ADHC Community Access for tips on ways to develop a support network that’s good for you.

Come along to our seven meeting. Let us know what would support you. Share your ideas.

For further details, please contact Rosetta Sung, Senior Case Manager CALD Rosebery on 02 8344 2700?

Source: Resourcing Parents

Beyond the Square: Gerard's wrap up of 'See in Me'

• Congratulations to Gerard O'Dwyer, who was named yesterday as one of twelve recipients of funding under Year 1 of Amplify your art, who will undertake their professional development programs between March and December 2013. Gerard has been awarded $10,000 for skills development in digital media, voice and film production. We wish you all the very best for 2013.

The list of all the grant recipients is here.

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

Source: AArts News 28/2/2013

Beyond the Square's first performance at Riverside for 2013 was See in Me, staged 14th - 16th February, with a cast of seven actors, all of whom have Down syndrome. This is Gerard O'Dwyer's reflection on his preparation and performance:

Gerard O'Dwyer in See in Me, Riverside Theatres,
Parramatta, February 2013
Photo: Heidrun Lohr

My favourite in the See In Me Production was doing my Maccas piece and my piece with Audrey and working with Alison Richardson in the show and made me home at Riverside.

We met every Monday since July last year. We did movement with Dean Walsh. We also did video with Morgan Newall we did sound with Peter Kennard here at Riverside or Connect Studios. I love being in the production in the See In Me.

We had to come up with a story About Natalie Wood who died in her Surry Hills home she wasn’t found for 8 years. It’s about invisibility and invisibility, not being seen or heard and giving them a voice. We want to be seen and heard and giving a voice in the Arts.

I would like to keep going and do I what I love and keep going at it. I poured my heart in it and for me the show it touched me, it moved me, I cried during the show. I am hoping to doing it again.

I will miss doing my Maccas piece and my piece with Audrey that’s what I will miss the most and the show. I will miss that show See In Me, it is what I do Best.

Reposted from Beyond the Square, 27th February 2013, with kind permission.

More  photos and information about this production and other projects can be found on the Beyond the Square website, and Facebook page.