It's nearly T 4321 time

T4321 is an opportunity for the whole community to join in the celebrations for World Down Syndrome Day - 21st March - recognise the abilities and achievements of people with Down syndrome and raise vital funds to support their needs.

Anyone can take part, anywhere by putting on a morning or afternoon tea, inviting friends, workmates, neighbours, club members, and enjoying some good company and conversation over a friendly cuppa.

People with Down syndrome are now living more confident happy and independent lives than ever dreamed possible. To celebrate that fact and to foster further advancement by creating greater community acceptance and understanding, the first World Down Syndrome Day was declared on 21st March, 2006.

By the following year, hundreds of organisations around the world had joined in the
celebrations with a variety of events. In NSW, ‘Tea for 321’ (T4321) was launched with over 60 events and over 1000 people taking part across NSW.

To host a T 4321 event or for more information contact Priscilla Leong on 9841 4404 or priscilla@dsansw.org.au

Inclusive Art Clubs: Penrith Regional Gallery

Accessible Arts is advertising two five-week Art Clubs for beginner and intermediate artists who identify as having a disability.

 Clipart from Clipartheaven.com

In these studio-based workshop programs at Penrith Regional Gallery (Emu Plains), participants will explore art as an expressive form, while learning new techniques and exploring a variety of art-making mediums. Art Club participants need to be able to sustain an interest in art making over a two-hour workshop.

Term One 11th February - 12 March 2013

Details for enrolment  enquiries are available from the Accessible Arts website.

Wordless Wednesday

Events in February 2013

Sprung!! Dance Troupe 
Alstonville, NSW
First Sundays, from February 2013

ADHC Consultations on the NSW Disability Services Act Review
Across NSW
throughout February 2013

Having a Say Conference  
Geelong, VIC
6th - 8th February 2013

Appability: iPads for beginners (Northcott)  
Parramatta
12th February 2013

See in Me, (Beyond the Square)
Parramatta 
14th - 16th February 2013

Submissions close on  Improving Employment Participation of People with Disability
15th February 2013

Aspire Early Intervention and The Literacy Centre Information Session

Wentworth Point (Sydney)

22nd February 2013

Independence! Ours and Theirs (DS NSW) 
Burwood
23rd February 2013

Arts and the individual  
Newcastle
28th February 2013

See in Me: ticket discount offered to DS NSW members

SEE IN ME is a major new production for Beyond the Square’s ruckus ensemble features 7 very talented performers who also have Down Syndrome.

Beyond the Square is offering members of Down Syndrome NSW:

$10 discounted tickets to 12 noon performances on either Thursday February 14th or Friday February 15th

And $15 tickets to 7pm performances on Friday February 15th and Saturday February 16th 

at Riverside Theatres, Parramatta

To claim this special offer quote ‘RUCKUS’ when booking. To book call 8839 3399

Riverside Theatres is also a Companion Card affiliate.

Cherry Rainsford

We were sorry to hear of the death of Cherry Rainsford on 23rd December, after a fall at home.  Mrs Rainsford and her son, Andrew, who has Down syndrome, were interviewed for the excellent article published by the Australian Womens Weekly (December 2012 issue), about the experience of raising children with Down syndrome who are now adults in their 40s.

Our sympathy is extended to Andrew, his family and Mrs Rainsford's friends.

Australia Day Honours 2013

As always, the Australia Day Honours have this year recognised many Australians for the contributions they have made to the community by supporting people with disabilities in various ways.  Congratulations to these NSW recipients whom we know have worked with people with Down syndrome and their families - if you know of others, please let us know:

Junction House Band

Belinda (Lindy) Morrison, Clovelly, NSW. Medal(OAM). For service to the Australian music industry as a performer and advocate. Among her wide-ranging work as a musician and advocate, Lindy Morrison has been the director of The Junction House Band for several years.

Emeritus Professor Philip Jack Foreman, Bellevue Hill, NSW. Member (AM in the General Division). For significant service to tertiary education, particularly in the area of special education, and to people with a disability.

Ethel McAlpine, Barrack Heights, NSW.  Public Service Medal, New South Wales Public Service. For outstanding public service to people with a disability in New South Wales (in public education).

Young Australian of the Year is a Special Olympics volunteer and mentor

The 2013 Young Australian of the Year, announced in Canberra last night is Akram Azimi, a Special Olympics Western Australia (SOWA) volunteer and mentor on the Athlete Leadership Program (ALPs) at Special Olympics Australia. Special Olympics Australia said the award is 'great news and well deserved. Akram is a passionate advocate and supporter of Special Olympics athletes - well done on this prestigious award.' (SOA FAcebook page, 25/01/2013)

Read more about Akram Azimi's mentoring activities on the Australian of the Year website.

Akram Azimi, ALPS Mentor and Young Australian of the Year 2013, with athlete Brad Osborne and fellow mentor West Coast Eagles captain Darren Glass. (Photo: Special Olympics Australia)

Weekend reading and viewing 26th - 27th January 2013

Down syndrome - a promise of happiness or a curse? Deanna J Smith, Everything and nothing from Essex, 21st January 2013

Stephen Campbell Photography - Disability Project (Personal). Stephen Campbell is a British photographer, and Dad to Elizabeth who has Down syndrome, and multiple serious health issues. He is 'documenting the various ups and downs of caring for' Elizabeth, to reach out to others whose lives are similarly complicated, and as a potential fund-raiser for a service that helps to support his family. Some of the images may be somewhat confronting, but at the same time, Elizabeth's personality, and her family's care for her is beautifully captured.

My Brother Used to Have Down Syndrome, Eva Glettner, Huffington Post, 22nd January 2013

The Social Construction of Selective Abortion, Amy Julia Becker, The Atalantic, 22nd January 2013

At last I've seen the light, Rachel Leslie, Unless (blog) 5th January 2013

Everybody’s buddy returns to O’Hara High School, Kevin Kelly, Catholic Key News, 24th January 2013.  A US Catholic high school supports a student with Down syndrome diagnosed with the rare but life-threatening condition Moyamoya, and welcomes him back to school after neurosurgery.

N3lla's Triple Crown. Kelle Hampton, Enjoying the Small Things, 20th January, 2013. Nella's family is celebrating her third birthday with this video record of the support they have received from other families and professionals, and a US based fund-raising initiative. Kelle Hampton is a photographer, and the author of Bloom.

Bullying, stereotypes, and Down syndrome, Matthew, VATTA blog - Canadian Down Syndrome Society, 23rd January 2013

These two articles are responses to the widely circulated news last week of the choice of two Belgian brothers to end their lives in the face of increasing disability (not Down syndrome):

In pursuit of good lives, and good choices, Leah Hobson, Ramp Up, 16th January 2013

Euthanasia: let's look at the bigger picture,Craig Wallace, Ramp Up, 21st January 2013

Website of the Week: Young Carers NSW

From the Young Carers NSW website:

• There are around 347,700 Australians, under the age of 25, providing care to a family member who has a long-term illness or disability? (5.2% of all people under 25)

• The Young Carer Program at Carers NSW was developed to make a positive difference to the lives of young carers and their families.

• Young Carers are children and young people, 25 years or under, who help to support a family member or friend who has a disability, mental illness, drug or alcohol dependency, chronic condition, terminal illness or who is frail.

The aims of the Young Carers NSW Program:

• Promote the issues and needs of young carers through statewide programs 
• Develop a young carer support network in partnership with relevant agencies, services and schools 
• Coordinate a variety of young carer activities in the short term 
• Support referrals to local services who can assist young carers and their families 
• Develop and distribute other appropriate resources 
• Review and evaluate existing support activities

A screen from the  Young Carers NSW website

The Young Carers NSW website provides an enormous amount of information about events, projects and resources for young carers, such as siblings.

• Young Carers at Carers NSW on Facebook
• Carers NSW Biennial Conference 14th - 15th March 2013

Carers Australia launched its own Young Carers website in 2012, designed to support a different audience:

"The website is specifically designed as an information resource for professionals such as teachers and service providers and members of the community who may be in contact with young people who have caring roles," NSW Minister for Disability Services, Andrew Constance said at the launch.

"We want to ensure that young people receive the supports they need especially in relation to balancing their education and recreation with their responsibilities as a carer."

Young Carers (Australia) website, launched in October 2012

Arts and the Individual: forum, Newcastle

Accessible Arts is keen to understand more about issues for artists with disability in the National Disability Insurance Scheme (NDIS) launch site of the Hunter region so we have partnered with the Octapod Association and the City of Newcastle to develop a forum.

Arts and the Individual - a forum to explore how the NDIS can assist artists with disability aims to

• provide a place where artists with disability, carers and service providers can explore issues associated with the launch of the NDIS in the Hunter region
• develop an understanding of issues of concern and an approach to advocacy during the roll-out of the NDIS
• develop networks of artists with disability in the Hunter region.

"People with disability should be in the driver’s seat when it comes to innovation. They should be asked what they want to do with their lives; that’s what should bring about change."  Participant, National Disability and Carer Alliance NDIS consultations, 2012

10:00 am to 2:30 pm Thursday 28 February 2013

Newcastle Museum, Workshop Way, Newcastle.

Preference given to people working or living in the Hunter region as numbers are limited.

RSVP 14 February 2013 using the online registration form.

Further information from the Accessible Arts website.

Kurt Fearnley highlights Australia's record in supporting its citizens who have disabilities

Every Australian Counts campaign poster for the NDIS

Transcript of the 2013 Australia Day address, delivered by Kurt Fearnley OAM, 22nd January 2013, Conservatorium of Music, Sydney.

Since its inception in 1997 and in a fitting build up to Australia Day, the Australia Day Address has become one of the nation’s most important and successful Australia Day initiatives. The Address taps into the essence of what the 26 January is all about – celebrating and reflecting on our national spirit.

Eminent individuals are invited to provide their own unique perspective on issues such as Australia's identity and the challenges that confront our society.  (Australia Day Council NSW)

Kurt Fearnley gives Australia Day Address, Amy Taylor-Kabbaz, ABC 702 online, 23rd January 2013 - includes an audio link to the speech and an MP3 file you can download.. 

Dance, movement and drama classes

Sydney Creative Movement is taking enrolments for integrated dance classes that start on Saturday 2nd February.  Classes are held in Hickson Road, Sydney. Details for Integrated Contemporary dance and Integrated Hip-Hop are here.

Beyond Abba (a Beyond the Square initiative) is enrolling for movement and drama classes for 2013, that start on 6th February.  A range of options for days and class times is offered; all classes are held at the Granville Comunity Centre.  Details are here.

Previous posts on new 2013 dance classes:

Sprung! Alstonville

Dream Big Dancers, Illawarra

Review of the Disability Services Act: new laws to reflect reforms to disability services

www.adhc.nsw.gov.au

New laws will be developed to support the NSW Government's reforms to the funding of disability services and to facilitate the State's readiness for the introduction of the National Disability Insurance Scheme.

Minister for Disability Services Andrew Constance has announced a review of the Disability Services Act 1993, which will be updated to reflect the modern day supports for people with disability.

“We are currently seeing historic changes to the provision of disability support and services with individualised funding packages to be rolled out from mid-2014, and the full NDIS from July 2018,” Mr Constance said.

“As part of this, legislative change is needed to help make the reforms a reality and to create a single legal framework for NSW which affects people with disability.

“We want the law to support the right of people with disability to be in control of their lives and to ensure that people with disability can participate fully in their communities. The implementation of Stronger Together 2 and the reform of disability laws will ensure that NSW models key elements of individual choice and control and reform which underpin the NDIS.’’

A series of face-to-face consultations will be held across NSW beginning in February.
The Issues Paper: Reforming NSW disability support - the fundamental legislative issues will form the basis for discussion at the consultation sessions. The companion Discussion Paper: Reforming NSW Disability Support - legislative structure and content, discusses the legal issues in more detail.

“I am calling on people with disability, their families and carers, service providers, advocates, peak bodies and government agencies to contribute to the development of a strong legal foundation to support the disability reforms,” Mr Constance said.

“Although progressive when introduced, the Disability Services Act is now out of step with the contemporary approach to delivering disability services.

“It needs to be modernised to reflect the shift towards person centred disability services, client-directed supports and individualised budgets, where the person with disability is at the centre of decision making and is able to exercise choice and control over the nature of their supports and how they are delivered.”

Contributing to the review can be done either through face to face consultation sessions or written feedback.

To find out more visit: www.adhc.nsw.gov.au/dsareview where you will find a schedule of consultations to be held across NSW during the first two weeks of February; links to the discussion papers and information about other ways to contribute to the review.

Source: New laws to reflect reforms to disability services, ADHC media release, 18th January 2013

NSW CID consultations for ADHC on Disability Services Act

NSW Council on Intellectual Disability has been asked by Ageing Disability and Home Care to run accessible consultations for people with an intellectual disability regarding the review of the (NSW) Disability Services Act.

These accessible consultations will take place in two metro Sydney locations and in Broken Hill in February. 

They will provide people with intellectual disability the chance to comment on what changes should be made to the Disability Services Act. To participate in either the Broken Hill or Sydney metro accessible consultations facilitated by NSW CID please contact Yvette Proud at NSW CID, phone 9211 2611 or 1800 424 065 (toll free) or email yvette@nswcid.org.au.

Source: NSW CID E-News, January 2013

US convention on Down syndrome: Denver, July 2013

Should you be planning to be in the US during the northern summer, you might want to check out the program for the renowned annual convention hosted by the National Down Syndrome Congress to be held in Denver, Colorado in July. The program is designed for both families and professionals. Click on the image for a larger view:

'Stronger Together' annual report online

NSW Ageing, Disability and Home Care (ADHC) has released an online edition of its 2011 - 2012 annual report on the Stronger Together 2 initiative that sets out the NSW government's commitment to meet the needs of people with disabilities and their families.

Beyond the Square: 2013 program

Beyond the Square's performance program for 2013 kicks off with See in Me - a theatre work that is part of the Between the Cracks project, exploring what it is to be 'invisible, isolated and alone'.  ruckus ensemble have been preparing for the performance over 18 months.  Several of the players are young people with Down syndrome.

See in Me
Riverside Theatres, Parramatta
Thursday 14th - Saturday 16th February 2013

For all details and day and night session times, see the Beyond the Square program for January - July 2013.

A plain English guide to the NDIS Bill

Understanding the  National Disability Insurance Scheme (NDIS) Bill – A plain English guide for consultation has been published online by Disability Directory. Their recommendation for its use:

Read it before you attend consultations, or use it as you read the legislation so you can understand what you are reading. use the questions to think about what you believe, what your experience has been, and what you want to say to the people drafting the legislation.

The document is available for download. There is a donation guide provided, asking that you contribute towards the cost of its unfunded production of you are able to.

Note: DS NSW has not reviewed the document - the link is provided for information only.

Weekend reading and viewing 19th - 20th January 2013

A letter to teenagers with Down syndrome, Paul  Sawka, Paul's Blog, Canadian Down Syndrome Society, 16th January 2013

Requiem, Dave Hingsburger, Rolling Around in My Head, 13th January 2013.  A lovely, robust tribute to a man who lived 'a red-blooded life', informed by. but not defined by. his having Down syndrome.

Informing Reproductive Choice? Prenatal Genetic Testing in the 21st Century, Center for Integration of Research on Genetics and Ethics, Stanford Univeristy, symposium papers, May 2012

Three links about siblings:

My amazing sister Grace, Verity Stockdale, The Guardian (UK), 12th January 2013

Christmas with Lucy, Thomas Wells, Down Syndrome Association (London) blog, 3rd January 2013

2012 Sports Illustrate Kids Winner  - video about two brothers' award following their participation in triathlons. Not about a child with Down syndrome, but about one child's experience as a sibling of a brother with a significant disability. 

Research news update #1 for 2013

Newcastle University study on diagnosis and caregivers moves to next stage
The survey conducted by researchers at Newcastle University closed on 1st January. The study focuses on caregivers' experiences regarding the diagnosis of your child, including your emotional reaction and psychological well-being; and disclosure of a diagnosis to the child himself. The researchers thanks all who took part, and advise that they will pass on the analysis of the responses as soon as it is available.


US research study into children with Down syndrome and OSA
Children with Down syndrome often struggle with sleep apnea and the health and learning problems it causes.  It is encouraging to see news of new study into how those problems might be resolved.

A team of researchers at Children's Hospital Cincinnati lead by paediatric ENT surgeon Dr Sally Shott is recruiting participants in a study of children up to 21 years of age who also have obstructive sleep apnea OSA.  This research study is about developing computer models of the airway of children with Down syndrome and OSA. The computer models will be used to develop better surgeries to help improve OSA.

The researchers will perform sleep studies on the children with and without CPAP (continuous positive airway pressure) support, and will perform MRI (magnetics resonance imaging) studies while the children sleep.

We will follow this study with interest, and report back on progress and outcomes.

Source:  DS Press, Vol 32 #1, Winter 2013, Down Syndrome Association of Greater Cincinnati

Library Thursday: new on the shelves

Down Syndrome NSW members can contact the library to arrange loans. New items on the shelves:

Books

Down’s Upside: Capturing the Positives, Eva Snoijink
This is a beautiful, large format book containing photographic portraits of babies and children with Down syndrome.

The Politics of Down Syndrome, Kieron Smith
Smith has written an essay that will resonate with many parents. Perhaps too, many will take heed of his call to action, and as best they can, raise awareness of these issues. After all, given we are on the cusp of genetically identifying other conditions such as autism in utero the need to speak up as Smith has done and insist it is not acceptable to view people with Down syndrome or any disability as lesser can only become more pressing. And as Smith says, it is not acceptable to veer back towards exclusion. ( Voice 2012)

Speaking of Apraxia: A Parents’ Guide to Childhood Apraxia of Speech, Leslie Lindsay
While not Down syndrome specific most of the information would also be of interest to parents raising a child with Down syndrome and apraxia. Essentially a self-help book it provides the reader with one woman's story of raising a daughter with CAS (Childhood Apraxia of Speech) interspersed with advice, practical suggestions and the latest research findings.

The Boys’ Guide to Growing Up, Terri Couwenhoven
Provides clear information for boys about the physical, emotional and social changes of puberty.

Lucky Dogs, Lost Hats and Dating Don’ts: Hi-Lo Stories about Real Life, Thomas Fish and Jillian Ober

Who Sank the Boat? Pamela Allen
This edition of perennial children’s book favourite has sign language diagrams accompanying the text.

DVDs

Accommodation Support Options (DVD + Booklet), Family & Community Services ADHC NSW Government
Succinct outline of accommodation support options available in NSW.

These two titles were inadvertently omitted from our earlier list of books designed to help children understand death that are available for members to borrow from our library:

I miss you: a first look at death,
by Pat Thomas

When dinosaurs die: a guide to understanding death,
by Laurene Krasny Brown

Local press for Special Olympians: Penrith Star

Another fabulous photo of Special Olympian, Josiah Bamber, and team mate Joshua Paine-Bell in today's Penrith City Star, along with a great story about their medals from the Junior National Games last month, and with contacts for Special Olympics Blue Mountains Region.

APPability: ipads for beginners.: free training session (Northcott)

Click on the images for a larger view:

APPability: ipads for beginners 

Northcott offers a 3 ½ hour training session to explore how these devices, with the help of ‘apps’ can be used to help children learn.

WHERE: Northcott Parramatta Office,
1 Fennell Street, North Parramatta

DATE: Tuesday, 12th February 2013 or  Monday, 13st May 2013

TIME: 9:30am – 1:00pm

COST: FREE - but registration is essential. Child care is not available. 

HOW TO REGISTER: Phone (02) 9890 0528 by 8th February or 9th May 2013

My Choice Matters

My Choice Matters is a $5 million consumer development fund that has been set up by the NSW Government.

It is governed in partnership between the NSW Council for Intellectual Disability (NSW CID), and the NSW Department for Ageing, Disability and Home Care (ADHC). There will also be an Advisory Group appointed by the Minister for Disability Services.  (Who we are)

Having more choice and control is a big change for many people.

My Choice Matters will work together with you to build on your skills and abilities. This is so you can feel ready to make the most of the changes. You can:

• dream and have more choices
• choose your workers
• decide what times your workers come to support you
• select new supports and learn things
• try new activities
• take control of organising these things, and
• hire people to do all the paperwork for you.

From March 2013, My Choice Matters will provide opportunities for all this learning to happen through events, training and information sessions, workshops, peer support, mentoring, leadership development and more. (What we do)

Nathan Basha is a spokesperson for the Get Involved page on the My Choice Matters website - drop by for much more information.

Health information about adults with Down syndrome: online video

Spend 90 minutes with Dr Brian Chicoine Director of the Adult Down Syndrome Center  (in Chicago) via the online edition of his presentation to the (US) National Down Syndrome Congress  annual convention in 2012, now freely available here.

Dr Chicoine introduces the aim of their work as 'keeping people with Down syndrome healthy, so they can really rock that extra chromosome'.

Well worth the time.

Dr Chicoine identifies this as the single most important lesson he teaches medical students and practitioners about their patients with Down syndrome.

Weekend reading and viewing 12th - 13th January 2013

Somos la banda Motxila 21. A Spanish music video clip - some of the band members have Down syndrome.

Communication Takes Two, Cathy Binger and Jennifer Kent-Walsh, The Leader (published by the American Speech and Hearing Association), 18th December 2012

A colourful mix-master, Lisa Cuthbertson, Artery (Australia Council blog) 20 December 2012. Blog ost about Digby Webster's exhibition

There May Be Curves in the Road to Using Technology, Susan A. Schenk, Special Education Aadvisor, 24th November 2012.

iPad apps help people with disabilities be independent, Ernie Garcia, lohud.com, 4th January 2013

What Penny's birthday and epiphany taught me about who we all are, Amy Julia  Becker, Thin Places, 7th January 2013

Bold and brave services to replace traditional disability service system, (NSW) ADHC media release, 21st December 2012

• Ability Links NSW Taskforce Report 
• Ability Links NSW Fact Sheet

Something for the pain, Paul Austin, Bloom - parenting kids with disabilities, 7th January 2013.  This blog post, an extract from a book, has given rise to a range of comments, some supportive, some highly critical.  It also prompted a follow-up post in defence of the author, In praise of honesty, by George Estreich, on Bloom, 9th January 2013. Writer and website editor Pamela Wilson has also commented on both posts, at Children with Special Needs.

Connected!

Creating Connections, Accessible Arts presence in the Far North Coast region of NSW is living up to its name with a new, comprehensive website and online options.  It provides information about projects, events and opportunities in the region across the whole spectrum of the arts.

Through the website, you can link to the Creating Connections blog for the latest news, to the Facebook page and to their Twitter account.

Library Thursday: books on Kindle and other devices

Late, Lost and Unprepared - is now available in a Kindle edition, as are a number of other titles from Woodbine House publishers, including an increasing list of classics and new titles.

Many public libraries now offer loans of eBooks to their members, with items available for a range of devices. Ask your local library to add your choice of Kindle/eBooks that are of interest to families and professionals working with people with Down syndrome to their catalogues (most libraries welcome suggestions for items to add to their collections). And then spread the word locally when they do.

JB at Special Olympics Junior National Games

Special Olympics New South Wales Volunteer, Georgia Fitzgibbon with some NSW athletes during the Junior National Games in December 
From left: Tristan Grunsell, Josiah Bamber and Michal Wade.
 Picture: Peter Muhlbock / courtesy Special Olympics Australia.

Josiah's mother, Michelle Bamber has written about Josiah's involvement in various sports and fitness activities in the December 2012 issue of the journal, Voice (published by Down Syndrome NSW and Down Syndrome Victoria). Contact Down Syndrome NSW at admin@dsansw.org.au or phone 9841 4444 with subscription enquiries.

Research: new study on longevity

A Danish study published this week in the Nature journal Genetics in Medicine, January 2013, confirms increasing longevity amongst people with Down syndrome in Denmark. It found that access to heart surgery was highly significant, and that people with mosaic trisomy 21 were likely to live longer than those with 'ordinary' trisomy 21, or with translocation.

The abstract is freely available online. The full text of the article is available for purchase online or through libraries to eligible borrowers:

Survival among people with Down syndrome: a nationwide population-based study in Denmark, Genetics in Medicine (2013) 15, 64–69 doi:10.1038/gim.2012.93

SHORT+SWEET SYDNEY 2013

Short+Sweet Sydney is the largest festival of 10 minute plays in the world, held annually at King Street Theatre in Sydney.

Click on the image for a larger view of the poster for David Bulmer's King Street Lights, starring Gerard O'Dwyer and Alison Richardson:

© Juan Moyano | Dreamstime.com