Wordless Wednesday

Distressing news report

A very distressing experience for a NSW man with Down syndrome and his family was reported on the front page of the Sydney Morning Herald yesterday, as an example of the risks of telephone triage of emergency ambulance calls.  Our deepest sympathy is extended to Geoff Chesworth's family - the grief of his untimely death is exacerbated by their experience in trying to get emergency help.

Two letters to the editor commenting on the circumstances were published today.

These two articles by the SMH's Health Editor, Julie Robotham, published in yesterday's and today's editions are about the telephone triage process that might put people with intellectual disabilities at particular risk, and the investigations promised.

Website of the week: Play Talk Learn

Play Talk Learn is a website maintained by a Western Australian speech therapist who is also a busy mother of young children.  Emily says of her site:

This is how Play Talk Learn came about. Here you will find activities that are:

• fun (otherwise the little blighters won’t want to do them, and neither will you!)
• easy (I’m sure you’ve got lots of other things that you’d rather be concentrating on!)
• quick (do I have to explain this one?)
• done without special equipment (just a fossick through the craft box and the recycling bin!)
• designed to teach your child a new concept, word, or skill (whether you’re concerned about their development, or whether you’re looking for home activities)
• the result of being tried on real children in real homes in really busy lives!

With the long summer holidays just a couple of weeks away, families of young children with Down syndrome might find lots of easy and entertaining ideas here - let us know if you do.

Kyiv, one year on

You might recall Frank Buckley's article in our journal, Voice, just a year ago, about children with Down syndrome in Kyiv.  Frank has written an anniversary blog post to mark the first year's progress of Down Syndrome Education International's work in Kyiv, here.

Check out the media links - you don't need to know Ukranian to enjoy the short videos. The third article is in English, and includes a delightful photo gallery that will be very familiar to anyone who has attended an early intervention program. Great to see the kids playing, learning, cherished by their families.

Background on the Kyiv project is in this earlier post from Frank Talk.

Up, Up and Away on Aurora TV

People with disability will celebrate their lives and achievements across Australia on and around 3rd December, marking International Day of People with Disability.

Up Up and Away (the documentary from the Down Syndrome NSW project) will be screening at 8pm, 4th December 2011 on the Aurora Community Channel.

Ever After Theatre Company presents .... Power

A new work created by Ever After Theatre ensemble members

Kerrie Anne Bezzina, Matthew Cutmore, Tom Hancock, Jo Rix, Thomas Maxwell, Emma Plant, Rodrigo Salinas, Digby Webster

Tuesday 6th and Wednesday 7th December
8pm
Rozelle Neighbourhood Centre, 665A Darling St Rozelle
Entry: $10
BOOKINGS ESSENTIAL 9555 8988 extension 2 or everaftertheatre@gmail.com
“The secret is the power of story”
What is Power? 
Is it to control or command over others?
Is it the ability to do or act?
Is it accomplishing something great?

Power is a collection of improvisations and moving images the Ever After ensemble have been preparing over the past few months. It evolved from a performance some members of the ensemble presented at the Nepean Expo in 2010 called The Game. The company expressed they wanted to explore further The Game especially the roles and rules of the games people play, not only on sporting fields but in a playground, in a workplace or in places where major decisions are made. They then integrated these themes further during workshops with world-renowned physical theatre company Legs On The Wall. This special collaboration resulted in the powerful moving images presented intertwined with live improvisations establishing how we respond to power.

Ever After Theatre Company is a group of emerging artists who happen to have a disability. They create and perform their own work as a means of communicating with the broader community.

The Project 23 Nov: Living with Down syndrome segment

In case you missed it on Wednesday 23rd November, The Project's (Channel 10) segment on living with Down syndrome can be viewed here - the segment clip starts after a couple of ads ... then 'our' story is 6 m 30 sec in.

It's generated a lot of very positive comment on The Project's Facebook page, and on our Facebook page, and this compilation of direct responses.

Library Thursday: managing grief and loss

In response to requests from members we have added some books to our collection on helping children and adults with intellectual disabilities to deal with the death of loved ones. One mother whose young teen lost his closest friend in an accident, and his grandfather at around the same time said that she found it useful to place a loose photo of the friend and one of his Grandpa in the book he liked best, to help him relate the text to the people he loved. He kept the book in his room, and took it out when he needed to - which was quite often, initially.

Tear soup - a recipe for healing after loss, by Pat Schweibert and Chuck Deklyen
Because we never learn exactly who or what Grandy lost and why she is making Tear Soup, the story remains open to countless situations of bereavement and family members. By emphasizing the individual process of bereavement by making soup, Grandy’s brings a warm and comfortable feeling to an otherwise difficult subject matter for many (readers).

The saddest time, by Norma Simon
Three stories to help children talk about death – an uncle with a terminal illness, a classmate killed in an accident, and a grandparent.

Beginnings and endings with lifetimes in between, by Bryan Mellonie and Robert Ingpen
A useful book to explain to children that death is a part of life and that, eventually, all living things reach the end of their own special lifetimes.

When someone very special dies: children can learn to cope with grief, by Marge Heegaard
A practical format for allowing children to understand the concept of death and develop coping skills for life, this book is designed for young readers to illustrate.

Down Syndrome NSW members can arrange to borrow from the library by email to library@dsansw.org.au or call to speak with support and information staff, on 9841 4444

My life, my way: Choosing the Self Managed Model for your day program

NSW Ageing, Disability and Home Care (ADHC) has recently released a new information booklet (44 pages) which explains all about the Self Managed Model of their Day Programs (Community participation, Life Choices and Active Ageing).

It includes great stories from people (some of whom have Down syndrome) who are already doing this as well all the information people need to know to be able to get started with the Self Managed Model. It is clearly written and well set-out. The cover photo is very nice!

To see and download the booklet Life, my way: Choosing the Self Managed Model for your day program, click here. 

Stronger Together 2: Supported Accommodation Fact Sheet

This NSW Ageing, Disability and Home Care (ADHC) publication provides an update on the 1750 places as promised in the Stronger Together 2 initiative. Click here to check it out.

Wordless Wednesday

Everyone Can Dance: Narellan, 3rd December

Discobility Dance Party

Narellan Community Centre

Queen Street, Narellan 2567

11.00 am - 3.00 pm

3rd December 2011

Free entry all day

Other entertainment, BBQ, and much more ...

Contact: Tara Grech, Everyone Can Dance

0422 085 470

tara_grech@hotmail.com

www.everyonecandance.com.au

Free dance workshop for International Day of People with Disability

An invitation from Arncliffe Community Centre:

Join us to celebrate International Day of People with Disabilities.

Learn some new moves and have fun @ our free Dance Workshop.

No matter what your disability. if you’re aged between 12-26 years of age - everyone welcome and bring your carer along.

Friday 2nd December

11.30am—12.30pm

Coronation Hall

23 Barden St Arncliffe

To book a spot or for more information, call Arncliffe Community Centre on 9503 9900.

An initiative of St George Community Services Inc

Inclusive Technologies and Learning Disability in Education and Employment Conference

National Disability Coordination Officer Conference 2011
7-9 December 
Hunter Valley
For more info or to register contact
Kay Dean kay.dean@newcastle.edu.au on 02 4921 8844, 0438 218848 
or Timothy Hart on 8878 0514 t.hart@sydney.edu.au or click here for more info

The Project, Channel 10 Wednesday 23rd November

Be sure to tune in to Channel Ten 's The Project on 23rd of November - 
Fiona and Neil Cohen will be speaking about Down syndrome and their gorgeous son, Riley, and superstar Gerard O'Dwyer will also be making a guest appearance!!

2013 Down Syndrome NSW Calendar !

We know you haven’t started using your 2012 calendar yet, but its time to think ahead. Please send in your photos for our 2013 calendar!

Regular calendar buyers tell us how much they enjoy seeing the wide range of activities that people with Down syndrome of all ages have been up to over the past year.

Summer holidays, special events, starting school, starting high school, finishing school, going off to work or enjoying time with family and friends all make great calendar photos. If you have a particular interest, passion, hobby or skill, think about capturing that in a photo too.

Prints are welcome, but it is easier for everyone if you can email your digital photos as attachments,. For good quality printing, please send files that are at least 300 dpi resolutions, and a minimum of 500 Kb.

Include details of who is in the photo, and that they have given their permission for it to be used.

Please email photos to Angela Adams at admin@dsansw.org.au  or post to

Down Syndrome NSW
PO Box 9117
Harris Park  NSW 2150

Submissions for the 2013 calendar will close on 31st May 2012

Scrapheap Adventure Ride 3: Easter 2012

KOSCIUSZKO

www.facebook.com/scrapheapadventureride 

Registrations will open shortly – are you ready?

Three new opportunities to take part in local research studies

Quite a number of opportunities are currently available for people with Down syndrome and/or their families to participate in Australian research projects, either online, or in person.  See our 'Research participation opportunities' page (link at the top of this blog) for a full listing of current projects. These three are new notifications:

The legal function of serious disability in prenatal and neonatal healthcare setting - a nation-wide study is being conducted by researchers at the University of Technology Sydney and at the University of Sydney:

Download information provided by the researchers here.

HAVE YOU HAD PRENATAL TESTING FOR A DISABILITY?
HAD A CHILD IN NEONATAL INTENSIVE CARE? USED PGD?
DO YOU HAVE A CHILD WITH A DISABILITY?
We would like to hear about your experiences and, in particular, your thoughts and opinions about the management of potential disability before or during pregnancy or after birth. This Australian study examines the meaning of serious disability in prenatal and neonatal settings. Your contribution is valuable and will inform our analysis of law and policy relating to these practices.

This study is supported by an Australian Research Council Discovery grant. To share your thoughts in a confidential online survey, visit http://seriousdisabilityproject.blogspot.com

* * * * * * * * * *

Cognition and gait in people with Down syndrome is a Macquarie University project, recruiting people with Down syndrome aged from 6 years to adulthood.
Documents provided by the researcher, Alicia Wilcox: 

• information and consent for parents of children with Down syndrome
• information and consent for adult s with Down syndrome

* * * * * * * * * *

Social  processing in people with Down syndrome is also a Macquarie University project, recruiting people with Down syndrome aged 6 to 60 years.

• Information provided by the researcher, Carly Black

* * * * * * * * * *


Please contact the researchers directly via the numbers or email addresses in the linked documents, if you are interested in participating.

Library Thursday: For Pete's sake!

New in our collection are two biographical volumes by Yvonne Crabtree, about life with Pete up to 30. She describes him as 'definitely a one-off'.  You can read extracts here. These are the cover extracts for each book:


For Pete’s Sake,  by Yvonne Crabtree 2007
I didn’t abandon Pete at birth – mainly because the thought never occurred to me to do so – but there were times in later years when, I have to confess, I wondered what life would have been like if I had. Having got to where he is now, truly, I can say, what a lot we would have missed! Life with Pete has been a giant roller coaster of a ride; at times plumbing the depths but equally experiencing high points we might never have known without him. And boy, have we had some laughs! If you have, or know, a child with Down’s Syndrome there may be parts of this book that ring very true for you but don’t panic too much; the chances of him or her being another Pete are pretty slim. He’s definitely a ‘one-off’.

“Oh No! Not You Again!”,  by Yvonne Crabtree
 Thirty! Who’d have believed it? There was a time when I didn’t think he’d make double figures – or that if he did, I wouldn’t still be around to witness it. He was just like the character ‘Billy Whizz’ in the old ‘Beano’ comics – as fast as I cleared up one scene of devastation, he was creating the next!
But time has marched on and we’ve both survived – me to tell the tale and Pete to live it, in his own, inimitable fashion.

Once Pete moved into his flat, nearly eight years ago, I thought that life would quieten down, which to some extent it has, but life is never dull, even with Pete one-step removed and as ever, he presents us with challenges. In fact, life with Pete could be likened to doing a very complicated jigsaw whilst wearing a blindfold. He didn’t come with an instruction booklet, so we continue to grope our way along, trying our best to guide and support him. So from new girlfriends to new jobs, this is the story of Pete negotiating the way through his twenties – and managing to scrape out at the other end. Perhaps I should have called the book ‘Peter Crabtree: The Cappuccino Years’.

Down Syndrome NSW members can arrange to borrow from the library by email to library@dsansw.org.au or call to speak with support and information staff, on 9841 4444

Wordless Wednesday: Smiles 4 a Day

Danceability : tickets for tonight's concert

Danceability Australia has generously made eight free tickets to their concert TONIGHT - Wednesday 16th November - available to DS NSW members.

You need to be able to get to the Science Theatre at the University of NSW, Kensington for a 7 pm sharp start. Tickets will go to the first callers.

Call Lucy on 0418 608 033 and collect tickets at the venue tonight.

Will be a great night.

Playability: Saturday 3rd December, Five Dock

A free family celebration for International Day of People with Disabilities 

Saturday 3rd December 2011

10.00 am to 3.00 pm

Livvi's Place, Timbrell Park, Five Dock

www.touchedbyolivia.com.au

Some steps up the hill: health advocacy for Australians with intellectual disabiity

From NSW Council on Intellectual Disability:
Some steps up the hill, is an update on our advocacy and progress on the health of people with intellectual disability over the last year, prepared by Jim Simpson (NSW CID) and Nick Lennox (Australian Association of Developmental Disability Medicine).  Highlights include:

·       “Health and Wellbeing” is one of the six policy areas in the National Disability Strategy that was adopted by the Council of Australian Governments in February 2011. The Strategy includes a range of agreed national strategies for action. Since then, the Queensland and Western Australian Governments have released new disability policy documents with a major focus on improved health care.

·       We released our position paper on mental health and people with intellectual disability and our position was endorsed by numerous leading individuals and groups in the mental health sector.

·      The NSW Government has funded three new intellectual disability health teams and established an Intellectual Disability Health Network in its Agency for Clinical Innovation.

We have also had major areas of frustration. For example, despite its considerable action on mental health, the Commonwealth is yet to squarely address the well established barriers to mental health care for people who have both an intellectual disability and a mental illness.

However, there is now a much higher awareness in government and the health sector of the health inequalities experienced by people with intellectual disability and significant action to start to address those inequalities.

Many of you have supported our advocacy by endorsing our position statements and responding to our requests to write to politicians on key issues. And many of you have pursued your own advocacy and direct work towards better health care for people with intellectual disability. All of this action has helped to show governments and the health sector that the health of people with intellectual disability is an issue of major community concern.

We hope you find Some steps up the hill a useful update. It and other information about our health advocacy are available here.

'Doing my job is awesome' - employee of the year

This video allows a young San Franciso man, Jackson Soderquist Steel, and his co-workers to speak eloquently about his job as a docent at a science museum, and how he prepared to do it so well that he recently won a prestigious Employee of the Year award:



As a teenager with Down Syndrome, Jackson struggled in school. At 14, he first started working with JVS, taking our skill-building courses as part of his school day. Over the next five years, JVS coached him through his first jobs. Last year, JVS placed Jackson as an Explainer at the Exploratorium. Jackson has thrived at his job, learning quickly how to build his strengths, overcome his challenges, and communicate his needs to his supervisors. He loves his work and takes pride in setting a positive example to other youth with disabilities who visit the museum.

Jewish Vocational Services, Bay Area

World Down Syndrome Day adopted by UN

The international petition recently circulated by Down Syndrome International has been successful in convincing the United Nations to officially recognise World Down Syndrome Day (21st March) from 2012.

The petition collected well over 10,000 signatures from 87 nations.  Brazil sponsored the vote at the UN 'third committee', that was adopted by consensus yesterday in New York, and will be confirmed in the UN General Assembly in December.

Library Thursday: School Link Newsletter

The November 2011 edition of The Children’s Hospital at Westmead’s School-Link newsletter on mental health and intellectual disability in children and adolescents is now available online at www.schoollink.chw.edu.au 

Highlights include:

•  How much do we value families and how much does it impact on children with intellectual disability? by Associate Professor David Dossetor (CHW)

•  Supporting individuals with an intellectual disability through grief, loss and bereavement by Helen Goltzoff (ADHC)

•  The medicine cabinet: sleep glorious sleep by Judith Longworth (CHW)

•  Refugee, mental health, and intellectual disability by Gemma Jenkins (DEC)

•  Details on new book release: Mental health in children and adolescents with intellectual and developmental disabilities by Dossetor, White and Whatson (2011).

New research on heart defects in babies with Down syndrome

Around half of all babies with Down syndrome are also born with a congenital heart defect (commonly called a 'hole in the heart') of some kind.  A University of California San Diego/University of Utah research study is helping to solve the genetic puzzle that results in some of the heart conditions that occur so commonly in our children.

• Press release from UCSD
• The research paper is published online by PLoS Genetics

Disabled migrants still not welcome

Discussion of Australia's immigration treatment of people with disabilities, and how little has actually changed since the Enabling Australia report was released last year: ABC Radio National, National Interest, Friday 4th November 2011

Don't DIS my ABILITY: upfront and behind the scenes

Great use of video to promote Don't DIS my ABILITY 2011

First Flight Crew: street performances 12th and 19th

The First Flight Crew are back & are taking it to the streets!

See them bust out across central Sydney to all original music with Aussie B-Boy Morganics.

Sat Nov 12th - three performances near Central station from 11am. First stop Belmore Park, meeting at the rotunda.

Sat Nov 19th - three performances around Town Hall from11am. First stop Town Hall steps.

Watch them as they take off!

NSW Carers Awards: congratulations Carmel Flavell

The 2011 NSW Carers Awards were announced during the week shared by Down Syndrome Awareness and Carers in late October.

Among the award winners was Carmel Flavell, named as Ambassador, Caring Community Member

The Minister's citation reads:

A single mother with four children, Carmel has had to give extra care to her son who has Down syndrome and autism.
The experience has made Carmel an inspiring speaker. She gives regular addresses at Carer Safari and other forums and conferences.  She is also a Carers NSW representative and works as a special needs caseworker providing case management for families with children with disabilities in Camden and Wollondilly.

Carmel always makes sure we know about events coming up in her area, as well as playing a very active role in supporting other families. Congratulations on your award, Carmel.

Down Syndrome NSW e-Update - November 2011 issue now online

The November 2011 issue of the Down Syndrome NSW e-Update is now available online.

 The e-Update is a listing of events occurring over the next few weeks, and new information, largely collected from this blog, to provide a timely reminder for the next month or so.

Our next quarterly publication date is 1st December 2011 when we will release:

• Voice, December 2011 (the issue's theme is 'personal passions') - our quarterly journal published in collaboration with Down syndrome Victoria
  
• Down Syndrome NSW News and Update, Summer 2011 - 2012 - a quarterly round up of local NSW and Down Syndrome NSW news and events

Down Syndrome NSW members will receive their copies in the mail early in December.

Two videos - one concept

Two very nice recent videos show men with Down syndrome going about their daily lives with the support they need to live the lives they want:

The spirit behind The Creative Spirit (11 mins 12 sec) is designed to encourage creative organisations and businesses to employ people with disabilities - as Lloyd is.

Leigh's personal story (5 mins 24 sec) features a a very engaging spokesman for House With No Steps, who is a participant in the Independent Living Support Initiative, a program being developed by Down Syndrome NSW  in conjunction with the NSW Government and service providers.

Wordless Wednesday

Stronger siblings - a new DVD for parents and professionals

Stronger Siblings, developed by Siblings Australia and presented by Andrew Daddo, will be launched in Adelaide tomorrow, November 3rd.
The is designed to DVD assist parents, and those who work with families, to understand the experience of brothers and sisters of a child with disability and how to support them. Parents and siblings share their stories and, together with professionals, explore a number of issues.
It is an ideal resource for organisations to use with groups of parents, especially given the DVD includes notes to facilitate further discussion.
An order form is available here.

A short excerpt of the DVD on the Siblings Australia website shortly.

Don't DIS myABILITY 2011 launch

Congratulations to the five people with Down syndrome who are playing a prominent role in the Don't DIS myABILITY campaign for International Day of People with Disability across NSW this year.

The campaign was launched today with the announcement of the 2011 Ambassadors, including Saxon Graham, Melissa Eustace, Gerard O'Dwyer and Tracie Sammut.  Audrey O'Connor is the face of the campaign as the cover model for the annual magazine, Made You Look.

Information about all of the ambassadors, and locations of the many outlets distributing print copies of the magazine in metropolitan and regional NSW, and events is on the Don't DIS myABILITY website.

Audrey's photo is also on the NSW Ageing, Disability and Home Care home page banner.

Down Syndrome Down Under Swimming Organisation - first national meet

Congratulations to Down Syndrome Down Under Swimming Organisation on the success of the first Australian national swim meet for people with Down syndrome held in Noosa, Qld in September.  DSDUSO reports that 57 swimmers from Australia and New Zealand competed, and established 10 new World Records.

Twelve swimmers from NSW are listed among the competitors - congratulations to:
Mitchell Carlin, Gabrielle Clarke, Allison Gillis, Daniel Rumsey, Brendan Foley, Ashley Emerson, Lucy Dumitrescu, James Lawrence, Timothy Walsh, Katrina Brennan, Carley Chapman, and Dominic Paris.

Further information and individual results are on the DSDUSO website, as is information about the next International Championship, scheduled to take place in Italy in November 2012.

Access All Areas Film Festival 2011 - 2012

Access All Areas Film Festival 2011 presents a program of accessible Australian films across the country. 15 new and acclaimed home-grown short films will be screened, as well as family film RED DOG, which is taking Australia by storm.

Cinema Tour: 

• Parramatta Riverside Theatres 1st December 2011  
• Dendy Opera Quays 2nd December 2011

Community Tour:

• Erina
• North parramatta
• Wollongong
• Liverpool

The Schools Tour:
The Access All Areas schools tour is a program of new Australian short films designed to raise awareness about issues of ability and access in the classroom. The program is an opportunity to showcase access services such as captions and audio description, and features and education pack. Access All Areas School screenings are held  around the country between November 2011 and March 2012.

All program and venue details:  Access All Areas 2011 - 2012