DS NSW October Update now available online

The October 2009 Issue of the monthy information bulletin Down Syndrome NSW Update is now available online here.

Living with Down syndrome: Chinese translation released online

A Chinese translation of Living with Down Syndrome, the introductory book to the Down Syndrome Issues and Information series published by Down Syndrome Eduation International has been released, and is available online from the DS NSW website, here. It gives an excellent overview of life with Down syndrome, and is an useful introduction for families and for professionals.

Arabic and Vietnamese translations are also available online from the DS NSW website, and from Down Syndrome Education International.

The translations were professionally produced with the permission of Down Syndrome Education International, and with funding support from NSW Health, under the NSW Carers Program, The Australian Chinese Charities Foundation, the NSW Area Assistance Scheme and Down Syndrome NSW.

New York Times: Biotech Company Fires Chief and Others Over Handling of Data

By ANDREW POLLACK , published: September 28, 2009

A biotechnology company developing what was expected to be a groundbreaking blood test for Down syndrome fired its chief executive, a top research official and three other employees Monday after an investigation into “mishandling” of test data and results.

The company, Sequenom, announced the mishandling of the data in April, saying that the superlative results it had announced for its prototype test could no longer be trusted. A committee of independent board members then hired a law firm to conduct an investigation.

Sequenom said Tuesday that its investigation concluded that the company had “failed to put in place adequate protocols and controls” for studies and that some employees had failed to exercise adequate supervision. As a result, the company said in a regulatory filing Monday, “inadequately substantiated claims, inconsistencies and errors” about the Down syndrome test had been disclosed to investors.

The board fired Harry Stylli, the chief executive, and Elizabeth Dragon, the senior vice president of research and development, effective immediately, as well as three other employees whose names were not disclosed. Paul Hawran, the chief financial officer, and Steven Owings, the vice president for commercial development of prenatal diagnostic tests, resigned.

The company said the individuals who were dismissed or resigned had denied any wrongdoing. But it said the “committee’s investigation has raised serious concerns, resulting in a loss of confidence by the independent members of our board of directors in the personnel involved.”

Sequenom’s announcement left many questions unanswered, in particular how exactly the data was “mishandled” and whether what happened was mere sloppiness or outright falsification and fraud.

The lack of detail prompted one investor on Sequenom’s conference call Monday to accuse the company of “dancing around” what had happened, saying that would undermine investor confidence in the company.

Harry F. Hixson Jr., the chairman of the company, replied that the company could not say more because it was under investigation by the Securities and Exchange Commission and had been sued by shareholders. Sequenom said it would present the results of its investigation to the staff of the S.E.C.

Still, Mr. Hixson said that it did not appear that the officers who were fired or quit had profited financially “from any of the transactions here.”

Sequenom, based in San Diego, was developing a test to detect the chromosomal abnormality Down syndrome in fetuses, using a sample of the pregnant mother’s blood. Such a noninvasive test might have eventually replaced the tests now used, amniocentesis and chorionic villus sampling, which are more invasive and can cause miscarriages.

The company’s work drew widespread attention from Wall Street, the medical community and the news media, especially after it was reported that in early trial runs the test was virtually perfect in detecting Down syndrome, with no false positives or false negatives. Down syndrome, in which a person has an extra copy of a particular chromosome, is marked by some mental retardation and unusual facial characteristics.

The data, though announced by the company, had not been published in peer-reviewed medical journals.

The full report is published online here

When was that workshop again?

It can be difficult to keep track of the number of workshops and information events advertised. Here is a summary of our postings about events coming up in the next couple of months for which registrations are still open - click on the title to go to the relevant post:

Counselling Support Groups - Carers NSW and Counselling for All
October - November

Building Supportive Communities for people with disability - Family Advocacy, West Ryde
23 October


Transition for Carers Forum - Carer Support Team, Children's Hospital, Westmead
23 October

Moving Out - from planning to action - Family Advocacy, Hornsby, Newcastle, Burwood, Wollongong
November

Wills and Estate Planning - DS NSW, Bankstown
24 November

Planning - Step Ahead Consulting, Chatswood
21 and 28 November

Family Advocacy Workshops - October and November

Building supportive communities for people with disability

9.30 am - 12.30 pm
Friday 23 October 2009

West Ryde

Presenter: Bob Lee, Sunshine Coast Citizen Advocacy
Designed for families, allies and people who work with people with disability

Register by 15 October


Moving out…. from planning to action

A workshop about how you can support your family member with developmental disability move into a home of their own with support .

This workshop will provide examples of how other families have gone about supporting a family member to move into a home that suits their needs.

9.30 - 2.30 pm
Hornsby: Monday 2 November
Newcastle: Wednesday 4 November
Burwood: Thursday 5 November
Wollongong: Friday 6 November


For further details and registrations for both workshops, contact

Family Advocacy
PO Box 502 Epping NSW 1710
Phone: 02 9869 0866 or 1800 620 588 (NSW non metro callers)
Email: workshops@family-advocacy.com

Fliers for both workshops are available online at www.family-advocacy.com

Summer Bay myth

This letter was published by the Sydney Morning Herald on 24th September. The writer is referring to the current story-line in the popular soap, and the reality of accessing supported accommodation for people with disabilities in NSW.

Home and Away has gone from fiction to ridiculous. How can the scriptwriters ever think viewers would believe such a nonsense story line as a ''community house'' for people with disabilities with not only a spare bed but also where potential residents just need a desire to live there to start their ''trial transition''? Obviously it's written for the overseas market. Parents of people with disabilities in NSW know it doesn't happen anything like this.

The really sad thing is that it perpetuates the myth that there are supported accommodation places waiting to be had. How wrong can they be?

Jenny Rollo

Library Thursdays: Personal Stories

As noted previously, stories of other families' and individual's journeys with Down syndrome are amongst the most popular resources in the library. Our website also has links to some family stories. 

The NDSS(National Down Syndrome Society) in the U.S. has recently created a section on its website for stories called My Great Story. It uses a fancy interface to look like a book which takes a bit longer to load but the stories are interesting. I noticed some familiar names--Down Syndrome NSW member, Paul Doney, has a story listed. Tom Lambke, whose book, I just am, is in the library has a story. Sujeet Desai, American musician who has Down syndrome writes about travelling.  Others I enjoyed were Cardboard by Jolie Kanat and Morgan's View by Michelle Summers in the Families section.

Other stories to look out for is the new Gifts 2: How People with Down Syndrome Enrich the World, by the editor of Gifts: Mothers reflect on how children with Down syndrome enrich their lives.  The new book has stories by not just mothers but also siblings, grandparents, friends, aunts and uncles, cousins, teachers and others who know and care for people with Down syndrome. The library has ordered copies of this due in soon, so let us know if you'd like us to reserve one for you.

Other collections of stories in the Library are:

Windows into Heaven: Stories celebrating Down syndrome

Thicker than Water: Essays by adult siblings of people with disabilities

Opening the doors: the hidden lives of carers

Love you to Pieces: Creative writers on raising a child with special needs

A complete list of personal stories can be found in the Library Lists under Family Relations.

If you'd like to borrow these resources or any others from the library, just email us or call.

Comedy is King - what a night!

Comedy is King was a wonderful night - there are many, many people to thank and congratulate. They will all be thanked individually and personally, this is a just a quick public recognition of a great night.

Brian Doyle and his fellow comedians

All of the entertainers, Richard Wilkins (MC), Michael Hawkins (auctioneer)

(Yes, that is a horse in the grand ballroom of the Westin Sydney - Greg Anderson and Stardust were a highlight of the excellent entertainment program)

The speakers: Joe Lawler, Anthony Bell, Gerard O'Dwyer, and Fiona Cohen. You painted such a vivid and personal picture of what Down Syndrome NSW does, why it matters, and the outcomes for people with Down syndrome and their families.

Our guests, who were such an appreciative audience, and very generous donors

Sponsors, donors and supporters

International Events and the Westin Hotel

And the best "ambassadors" for themselves, and for the organisation were, of course, the people with Down syndrome who attended - all of them "worked the room" with aplomb, engaging everyone they met, including the celebrities they claimed as their own.

Some of the comments we overheard .....

Is it true that your character is Bob Trimbole? A young man introducing himself to actor Roy Billing, referring to his Underbelly role, who replied, It sure is - would you like photo? Of course!

You look gorgeous! A young woman introducing herself, quite unselfconsciously, to Bessie Bardot, who did indeed look gorgeous in red. And so do you! came the reply, and she did.

Hearing Anthony Bell talk about working with Kevin really encourages me. Mother of an 11 yr old.

More photos later .....

Down Syndrome NSW Annual General Meeting 2009

2.00 pm, Saturday 21st November, 2009

at our new office and resource centre, at

80 Weston Street, Harris Park

At the meeting the Annual Financial Statements will be presented and elections will be held for membership of the Board

Light refreshments will be provided

Phone the DS NSW office on 02 9841 4444 or click on the links below to download/request

a nomination form for membership of the Board

a proxy voting form

The closing date for nominations is 23rd October 2009

There is no charge but booking is required for catering:

Phone 02 9841 4444 or email executiveofficer@dsansw.org.au

Adult sibling survey

From Siblings Australia:

We are hoping to hear from adult siblings through an online survey. Please spread the information amongst your networks. The purpose of this survey is to research:

• The nature of the relationship between siblings and their brother or sister living with disability
• The type/amount of unpaid caregiving and support provided by adult siblings
• The perceived needs, both emotional and practical, of adult siblings
• The type of support siblings would like for themselves and in their role as a support person
• The concerns siblings may have about the future

The more participants we have, the better. Please complete survey by end of September. The results of this research will be presented at the Siblings Australia “Creating Connections” Conference. We hope that the survey will provide information to professionals, agencies and government departments to better support the needs of adult siblings.

Link to survey is:
http://www.surveymonkey.com/s.aspx?sm=rN_2ftzma3iDn23P1a9tTGuA_3d_3d

Today Show, Channel 7, Wednesday 23rd; Richard Glover, Radio 702, 4 PM Wednesday 23rd

Two media spots to tune into in the lead-up to our Comedy is King fundraiser:

Anthony Bell's regular spot on Channel 7's Morning Show this Wednesday (23rd September) will feature his experience employing a young man with Down syndrome over the last year and a half. The show starts at 9.00 am Anthony will be a guest speaker at Comedy is King on Wednesday evening.

Richard Glover will interview Phil Davidson around 4 PM on ABC Radio 702 on Wednesday 23rd September. Phil is performing his song, Georgia's Smile at our fundraising event, Comedy is King.

If you cannot get to the event, you can still contribute to our fundraising appeal: email Stephen Clarke, CEO of DS NSW at executiveofficer@dsansw.org.au

New media - webcast documentary (UK)

The Specials is an internet documentary series following the lives of 5 friends with learning disabilities (some of them with Down syndrome) who live together in a house in Brighton, UK. It is webcast in weekly 10 minute episodes with the housemates providing the voiceover, so the viewer is very much seeing the world through their eyes.

The producers tell us that it launched two weeks ago in the UK and so far it has been a great success with lots of media coverage and key learning disability organisations in the UK (including Mencap and the Down's Syndrome Association) giving their full support.

DS NSW members and staff who have watched the available episodes are interested to see more. The title has discomforted some, and most would have preferred something more creative.

We are interested to hear your responses: info@dsansw.org.au

In the news this week .....

Carer abuse of disabled on the rise Sun-Herald, 20th September 2009

Hospital 'should have told' of Down's risk The Age, 19th September 2009

Will Down Syndrome disappear? Washington Post, 16th September, 2009

Relative Values: Max Lewis and his mother, Sandy Times Online, 13th September, 2009

Patricia E Bauer's Disability News blog is back after a short summer break.

Are there only 1076 people seeking supported accommodation in NSW?

This report, highlighting inadequate provision of supported accommodation in NSW, in the Sydney Morning Herald on Tuesday 15th September:

Disabled and elderly housed in caravan parks

prompted this response:

Looking the other way
Letter to the Editor, Sydney Morning Herald, Thursday 17th September 2009)

Jim Moore, the head of the NSW Department of Ageing, Disability and Home Care, says there are 1076 people seeking supported accommodation in NSW (''Disabled and elderly housed in caravan parks'', September 15). Mr Moore's department does not know how many disabled people are seeking supported accommodation, because it doesn't want to know. The true number would embarrass the Government.
His department and the Department of Housing make it clear to people with disabilities and their carers there is effectively no supported accommodation to be had unless they are leaving jail or some other government care. Accordingly, people do not waste time chasing a non-existent service.

I could collect a list of 100 people within a week who seek supported accommodation and are not counted among the 1076.

Dianne Thian, Kensington

We don't doubt that as an individual Dianne Thian could find another 100 people in a week - we could do it in a day or two, as could most other similar organisations in NSW.

Update on educational provision for children with special needs

A further development in the proposed changes to the provision of support for children with special educational needs in NSW State schools was reported yesterday. The Minister for Education has agreed to increase the consultation period for the proposed changes, although they will be implemented in some schools in the first half of 2010, subject to consultation. Read Annna Patty's report in the SYdney Morning Herald here.


The NSW Teachers Federation has welcomed the slowdown of the implementation of changes.


There does appear to be any comment about this latest development on the Department of Education and Training Website. This blog post gives links to the DET briefing papers on the proposals.




Note that despite some rumours to the contrary that we have heard, the DET briefing papers explicitly deny that there is any proposal to close support classes for children with disabilities, or to reduce learning support officer positions.

Tracie Sammut joins Home and Away cast

Tracie Sammut, with great style, made her first appearance as Brendan's girlfriend, Ruby (why are there two characters with the same name?) in tonight's episode of Home and Away on Channel 7. Brendan was very exited about her coming over for dinner, and Hugo was uneasy ... the doorbell rang, and there was Ruby. She introduced herself confidently to Hugo, Martha and Xavier, paused and then floored them with "So, on a scale of one to ten, how worried are you about our relationship?"

Tracie's (Ruby's) entrance scene actually features in this sneak preview, with a subsequent scene from Monday night's episode (there's an advertisement first). Is there trouble head? This photo from next week's episode hints that there might be .....

Buddy Walk Event Kits: Sydney and Newcastle now available to download

Buddy Walk - Australia 2009 event kits, for the Sydney and Newcastle events are now available to download from here.

Your event kit includes:

• BUDDY WALK 2009: What’s it all about?
  
• SCHEDULE: What to look forward to on the Day
  
• WALK ROUTE: Your Buddy Walk Map and route instructions
  
• TRANSPORT: How to get there and get home – public transport options
  
• PARKING: Where to park.
  
• GUIDELINES and GENERAL INFO: First Aid, toilets, refreshments available, weather and help
  
• WHAT TO BRING: Be prepared!
  
• FUNDRAISING – the fun and easy way!

"Starting School" a new DVD

A new DVD – Starting School: Stories from parents of children with a disability – identifies strategies to ease the transition to school.

The DVD features the stories of six families who tell of their experiences as they prepared for their child to go to school for the first time.

Two of the families have children with Down syndrome. Doesn't Sam look good on the DVD label?

Our Parent Support and Information staff have reviewed the DVD and predict that it will be useful for families from the earliest stages of thinking seriously about choosing a first school. It is realistic, encouraging flexibility and cooperation, acknowledging the expertise of parents.

It will be useful for all parents, including those who are not always able to attend meetings about school matters, and includes both mothers and fathers, grandparents and siblings. A number of principals, teachers and learning support officers are interviewed. At 25 minutes, it delivers substantive information and views.

The DVD was produced by the Lady Gowrie Childcare Centre with funding of $148,000 from the NSW Government.

The DVD, in English, Cantonese, Dari, Dinka, English, Korean, Mandarin and Vietnamese, is available on request to the Early Childhood Intervention Infoline 1300 65 68 65.

A number of copies are available in our library.

Library Thursdays: New resources from Dave Hingsburger

New to our library this month are some video sets from Dave Hingsburger (see previous blog): The Whole Truth, a program designed to teach people with disabilities to know their rights and recognise when boundaries that lead to abuse are being crossed and how to deal with abuse. Many of the situations shown are very confronting. The program involves people with disabilities as teachers as does No! How!, a video written, produced, directed and acted by people with disabilities to teach others with disabilities how to avoid being a victim.

Also added to our library are 2 children's books from Hingsburger's Diverse City Press:

Avalanche on the Prairie, a fantasy adventure about a boy with Down Syndrome that saves a town with his friend.

Four Feet Tall, a story that deals with difference and acceptance. This book features a girl with an intellectual disability but not Down syndrome.

If you'd like to. borrow any of these materials or any others. please email us.

Comedy is King - a last chance to buy your tickets!

Our major fund-raiser, Comedy is King is next Wednesday 23rd September, at the Westin Hotel, Sydney. It will be a great night.

A few tickets remain - so if your are quick, you will be able to join us. Click here for details of the entertainment lineup, and for booking options.

DS NSW 2010 Calendar - advance orders now available

Craig Peihopa has done it again! His 10th calendar for DS NSW (for 2010) will be available shortly – advance orders can be placed now with the order form available here.

The 2009 calendar was a sellout – we have ordered a larger print-run, but order early to avoid missing out.

Thank you to all who have contributed photos - we could not do it without you!

Craig didn’t know that in 2000 he was signing up for a ten year + project, but he loves doing the calendar, and we love what he does. Thanks Craig for your commitment and creativity - we look forward to many more calendars.

More on Akihito Ochi, pianist

A little background on pianist, Akihito Ochi (see this post from 9/9/09):

"Concert marks Down syndrome milestone"

By NATALIE KOCH
Special to The Japan Times, Friday, Sept. 11, 2009

Akihito Ochi is a gifted pianist. He also has Down syndrome.

He started playing piano when he was 9 years old and held his first concert at the age of 10. His mother practiced classical music pieces with him, and he eventually learned how to score music. Ochi has composed and improvised music and performed publicly since he was about age 14.

Ochi recorded his first album "Like The Sea," in 1997, without any formal training, which was followed by "My Friend" in 2000, "A Bouquet Of People's Gratitude" in 2004 and his most recent release, "Fly To The Sky," in 2006. In 2004 and 2006, he also performed at World Down Syndrome Congresses in Singapore and Canada, and at EXPO 2005 in Aichi.

The concert is being held in part to mark the 50th anniversary of Dr. Jerome Lejeune identifying the cause of Down syndrome, where children have an extra copy of chromosome 21, known as a Trisomy.

Ochi's family hopes the performance will both raise awareness of Down syndrome and serve to thank those who have supported Akihito throughout the years.

Thus, a concert by the young pianist is just what the doctor ordered.

Workshop on planning (for people with intellectual disabilities)

Step Ahead Consulting offers a range of group workshops for people with intellectual disabilities, including this one, on strategies and skills for Planning various aspects of everyday life.

Saturday 21 and 28 November 2009

Time: 10.00am - 2.30pm (with a 45 min lunch break)

Where: Dougherty Centre, Chatswood

Age: 15 years +

Cost: $115 (for both days incl.GST)

Enrolment date: Friday 30 October

Topics covered by participants in the Planning workshop include:

- Planning my week
- Responsibilities
- Things I would like to do
- Keeping a calendar/diary
- Living with other people
- Planning what I need for my week
- Planning an outing
- Making a plan that works for everyone
- Finding out information
- Budgeting my money
- Need vs wants
- Saving money for something special
- How I can save money
- Managing time in my day
- Future plans


To enrol or for more information:

Step Ahead Consulting Pty Ltd
2/101 Milson Rd Cremorne Point NSW 2090

Ph: (02) 9909 0767 ; Fax: (02) 8569 0252

info@stepaheadconsulting.com.au
www.stepaheadconsulting.com.au

Specs4Us frames available from Sydney optometrist

Specs4Us make glasses frames designed to fit people with Down syndrome who might have difficulty in keeping their glasses in just the right place to maximise the vision correction that their lenses can give them. They are designed and manufactured by an American optician who is also the mother of a child with Down syndrome. Now a Sydney optometrist is stocking the frames in a range of sizes. Edgecliff Eyes can perform vision testing and prescribe glasses, or you can take your prescription from your own optometrist or ophthalmologist. They have an experienced and expert optical dispenser on staff who will ensure the best fit of Specs4Us frames, or other frames that you might choose from their range.

Edgecliff Eyes
Shop 24 Edgecliff Centre
203 New South Head Rd
Edgecliff, Sydney, NSW 2027

Ph 02 9362 3889
Fax 02 9362 3479

Wills and Estate Planning

An information evening for parents and family members of people with intellectual disabilities, such as Down syndrome

7pm – 9pm

Tuesday, 24th November 2009

Bankstown Sports Club

Speaker: Jonathan Harris
Senior Partner, Harris Freidman Hyde Page

There is no charge for this event, but prior booking is essential.

All enquiries and registration: contact Siena O’Brien at carereducation@dsansw.org.au or phone 9841 4411

Gilchrist continues to bat for FREEDOM WHEELS®

From Technical Aid for the Disabled, NSW:

Former Australian Test Cricketer Adam Gilchrist has signed on to support the FREEDOM WHEELS Modified Bike Service for kids with disabilities, for another two years.

It was Amway, who sponsor the program through their One by One Campaign, who made him aware of FREEDOM WHEELS, when they put out a challenge to Adam for the 2009 Indian Premier League. His task was to hit 25 sixes and Amway would contribute funding for these modified bikes. Not one to reject a challenge, Adam went beyond his target and hit 29 sixes, up from 19 sixes during the previous season.

After seeing the modified bikes in action and the smiles on the children’s faces, Adam was more than happy to continue supporting the service.

“As a father of 3 kids, I know how important it is and the joy a bike means to a child. On behalf of Amway, it is an honour to be a part of this program,” Adam said.

The FREEDOM WHEELS® Modified Bike Service customises standard pushbikes to give a new kind of independence to children with disabilities by allowing them to ride a bicycle for the first time. Since the program began, almost 400 bikes have been delivered throughout the country.
FREEDOM WHEELS is a joint undertaking between the charity, TADNSW (Technical Aid to the Disabled) and principal corporate sponsor Amway of Australia, whose support has allowed TADNSW to take the program regionally and now interstate.

“We have been modifying bikes for many years now and the initiative brings so much joy to hundreds of kids with disabilities by allowing them to ride a bike for the first time. We want to show the difference these bikes make to these kids and to their families. Suddenly, the whole family can go for a bike ride, which is often a huge achievement,” TADNSW CEO Joy Barrett said.

Prior to the sponsorship support provided by Amway’s One by One Foundation, volunteers would spend between 30 and 50 hours modifying just one bicycle. This has now been reduced to as little as three hours with the introduction of pre-made components.

TADNSW has been providing services to clients with disabilities for over 30 years and FREEDOM WHEELS is just one of the many services they provide to people with disabilities.TADNSW is running bike assessment clinics all the time. Parents interested in registering their child for a bike clinic or would like more information about the FREEDOM WHEELS program please contact TADNSW on 1300 663 243 or (02) 9912 3400. Alternatively, visit our website www.tadnsw.org.au

Transition for Carers forum: 23rd October

Transition in healthcare is about moving from adolescence to adulthood. It is complicated for children with chronic health conditions, but is much more so for those who have additional issues like an intellectual disability, autism or brain injury.

As a part of Carers Week activities, The Carer Support Program at the Children’s Hospital at Westmead invites parents and carers to attend the Transition for Carers forum.

WHO:

This forum is for parents & carers of young people aged 14 – 18 years who have a health condition & who, because of disability, will have difficulty managing their own care as adults.

WHEN:

23rd October 2009, 9.15am - 2.30pm

WHERE:

The Kids Research Institute, Meeting Room 1, The Children’s Hospital at Westmead. Cnr Hawkesbury Rd and Hainsworth St, Westmead.

REGISTRATION IS FREE. Morning tea and lunch provided.To register complete this registration form or call 9845 3590. Registrations close on 9/10/2009. Places are limited.

Click here to download a flyer.

A gifted musician

Akihito Ochi is a young Japanese man with Down syndrome who is a very talented musician - a composer and pianist. He played his own compositions at the 9th World Down Syndrome Congress in Vancouver in 2006. Four video clips have now been placed on You Tube, of this performance.

Akihito Ochi Live on Stage in Canada - part 1

Akihito Ochi Live on Stage in Canada - part 2

Akihito Ochi Live on Stage in Canada - part 3

Akihito Ochi Live on Stage in Canada - part 4

Thanks to Eiichi Momotani (Board member of Down Syndrome International) for passing on the links.

Andrew's wildest dreams come true at Kiama

It was a big couple of weeks mid-August for Andrew Case, playing rugby with the local team in Kiama, and the media follow-up. Anne Case was interviewed on ABC local Radio (Illawarra) on 10th, following publication of her letter to the editor of the Illawarra Mercury on 8th, publicly thanking Mark Bryant and Kiama Rugby Union Club for giving Andrew his run with the team.

The Illawarra Mercury followed up with Tim Keeble's story on 12th:

Every footballer fantasises about scoring a hat-trick of tries on debut. That dream recently came true for Mosman's Andrew Case, a 22-year-old rugby union fan born with Down syndrome. Andrew has become a regular face in the crowd at Kiama's home games recently.

On August 1, Andrew had his first taste of rugby when he took up Kiama club president Mark Bryant's invitation to take part in a friendly against University. Andrew had the time of his life, scoring three tries and narrowly missing his conversion attempts. After the game, he shared a couple of beers and a photograph with the players and was presented with a Kiama jersey and club tie.

"He had a ball. You couldn't wipe the smile from his face," Bryant said. "The idea came about while I was having a social drink with his parents, Larry and Anne, and we thought it would be wonderful."

The game was 10 minutes each way and involved mostly third-grade players. "It was great to see him enjoying being part of a team and experiencing the rugby culture," Bryant said.

"He made a speech after the game and had everyone in stitches when he said he might have to get a personal trainer to get a bit fitter. "I can't speak highly enough of University for supporting us and the referee was also a big help."

And then Andrew was named in The Fitz Files "Team of the Week" :

"Andrew Case. The 22-year-old with Down syndrome turned out with the mighty Kiama thirds last Saturday, scored three tries, and his mum is still crying. Good on you, Mrs Case, and Andrew. "

Peter FitzSimons, Sydney Morning Herald, 15th August 2009

Fathers' Day

And a great Dad story from the US, published this week

Comedy is King - latest news: Greg Anderson (Australia's Electric Cowboy) joins entertainment line-up

Comedy is King is a gala night in aid of Down Syndrome NSW - supporting children and adults with Down syndrome and their families

Wednesday 23rd September, 2009

Westin Hotel, No. 1 Martin Place, Sydney

featuring Brian Doyle and friends – some of Australia’s best comedy talent (Vince Sorrenti, Sean Kramer and more)

Plus the legendary Leo Sayer and Glenn Shorrock

Latest news on the entertainment line-up

* Just confirmed *

Greg Anderson, Australia's Electric Cowboy is returning from the United States for a rare Australian performance, live in the Ballroom at Comedy is King.

Football legends Craig Wing, John Raper, Ben Elias, Jarryd Hayne and more.

Guest speaker: Anthony Bell - Chief Executive Officer of Bell Partners, one of Sydney’s premium firms of Chartered Accountants, Auditors and Financial Advisors. Anthony is well-known for his TV appearances (The Morning Show) and for his high-flying and famous clientele. Anthony will speak about his experiences of employing a young man with Down syndrome, with the hope of inspiring others to do the same.

With a wicked sense of humour immense Irish charm, legendary Dublin-born comedian Brian Doyle delights his audiences.

MC: Richard ‘Dickie’ Wilkins, Entertainment reporter and host extraordinaire.

Special Guest and Screening: Gerard O’Dwyer, award-winning actor who has Down syndrome, will introduce the Tropfest-winning film in which he starred and won the prestigious best actor award. The film ‘Be My Brother’ also won best film.

Special Performance: Phil Davidson – Phil will perform live, songs from his beautiful and acclaimed album ‘Edge of it All’, including the very beautiful song ‘Georgia’s Smile’ – a tribute to his daughter who has Down syndrome.

Other live performances include: Vince Sorrenti, Leo Sayer, Glenn Shorrock

Please feel free to pass this information on to anyone you think will be interested in this very special once in a life time evening.

Click here to download an invitation and reservation slip
or you can book now on 1800 804 275
melanie@internationalevents.com.au
http://www.internationalevents.com.au/
or contact Priscilla at Down Syndrome NSW priscilla@dsansw.org.au ; phone 9841 4444

Click here to download a brochure about this important evening - you are welcome to email it to friends and supporters

Expressions of Interest - Gymnastics classes, Castle Hill, NSW

Jane Cooke at Castle Hill RSL Club's Gymsports program wants to hear from families interested in gymnastic classes for people with special needs:

Castle Hill RSL Gymnastics Club in conjunction with Gymnastics NSW has been working towards the education and training essential to developing an ongoing Special Needs Program during the Term as well as the already established Holiday Clinics.

With our responsibility as a 5 star club within the Association and commitment to support Coaching Courses and State based Competitions, time limitations have proven to challenge our desired plans to this end until now…...

Castle Hill RSL Gymnastics is seeking your Interest in consideration of programming a weekly Special Needs class during the School Term for Children within our community in 2010.

We would like to run a 6 week block program each school term from week 3 to week 8 on a Sunday. Sunday was chosen as it is the most valuable quiet time in the facility. This class would be specifically designed for Special Needs Children, not including siblings. Parent/ carer involvement is desired, although we are hoping to establish a network of Volunteer helpers to support each class program to give respite to families who have need, otherwise.

There would be 2 classes of 90 minutes duration, the cost for the program inclusive of Gymnastics NSW Affiliations and RSL Junior Sports Membership would be $70.00 per term

Gross Motor Body Disability

Class Time 10:30am to 12noon

• Down Syndrome
• Cerebral Palsy
• Physical Disability
• Poor Muscle tone
• Hearing/Sight impairment

Cognitive Disability

Class Time 12:30pm to 2pm

• Asperger’s Disorder spectrum
• Autism Spectrum
• Neurological disorder spectrum

(Click here for) an Expression of Interest Questionnaire that should only take a few minutes to complete. If you are involved in a Network Group in Special Needs, it would be helpful if you could pass this questionnaire onto others who may be interested.

Please return to the address given so that we can move forward to make this program a reality. If you would rather complete the questionnaire by Email attachment, please email me on cookej@castlehillrsl.com.au so that I can send the questionnaire directly.

We would like to gather this information by the start of October.

Kind regards,
Jane Cooke
Gymsports Coordinator

Endeavour Foundation acquires Cumberland Industries’ supported employment services

From NDS News Update, 3/09/009 www.nds.org.au :

The Endeavour Foundation, a large disability service provider and NDS member based in Queensland, has acquired the supported employment services of Cumberland Industries, which has been under administration since May.

Endeavour will maintain the jobs of the 580 supported employees whose future had been in the balance since the appointment of an Administrator at Cumberland. Cumberland’s supported employees, their families and carers will welcome this commitment. Endeavour has also indicated that it is hopeful that many of the support staff will also be able to maintain their employment in the businesses.

Endeavour will continue to operate the Filpac, Clean-Pac, Pak-It-Rite and Sew-It-Rite disability enterprises on a business as usual basis. These businesses will be the first disability services that Endeavour has operated outside of Queensland. Endeavour was not the only organisation located outside NSW to express interest in Cumberland, suggesting the declining importance of State boundaries in the sector.

The acquisition of the businesses by Endeavour was recommended by the Cumberland Administrator, Mr Peter Hedge and formally accepted by a meeting of Cumberland’s creditors on 1 September 2009. The acquisition has also been formally approved by FaHCSIA and a transfer of funding has taken place.

Endeavour staff will be meeting with the supported employees, their families and carers to discuss plans and assess needs as the businesses prepare to move forward following months of uncertainty. A dedicated information line - 1800 554 340 - has been established for employees, their families and carers and operates from 9:00am to 5:00pm AEST Monday to Wednesday. Assistance can be arranged outside these times if necessary.

5th World Down Syndrome Swimming Championships

Expressions of interest are now open to swim in Taipei Taiwan during October 2010.

Selection criteria and the EOI Form are available from the Down Syndrome Down Under Swimming Organisation website.

Expressions of interest are due in by 11 September 2009.

Team Australia ready to leave for the 4th international Down Syndrome Swimming Championships in Portugal in 2008

Literacy Week

It's Literacy Week this week. The library has many resources on reading and we have blogged before on some of these as well as some useful websites:

Interactive Reading Books

Oxford Reading and Language Research

Speech and Language Resource Guides

We have spoken often about the DownsEd Issues and Information series. Their Reading and Writing modules are all available to view online for free as well as available from our library if you'd prefer to borrow them.

Patricia Oelwein's Teaching Reading to Children with Down Syndrome is a great practical guide to teaching reading.

The Down Syndrome Society of South Australia have produced Teaching Reading Part A, Teaching Prewriting Skills to the Child with Down syndrome, and a Literacy Record are also available in our library.

We also have A Good Read: Books for adult new readers compiled by Jane Cameron. This book gives a brief synopsis and review of various books that may appeal to adults wanting 'easy' leisure reading. The book is nearly 15 years old so it is limited in that way, but would still be useful as many would be available in libraries. Also it would provide ideas for the type of books to look out for.

Other useful websites:

See and Learn Language modules from DownsEd. First modules available free online.

Down Syndrome Foundation of Orange County has some great resources available with their Learning Program. You need to register, but it is free.

Starfall is another great free program for learning to read. It is not specifically for people with Down Syndrome but it is very visual.

In addition to the learning to read books and websites available, there are also many children's books in our library that many can enjoy and use to improve their literacy just through reading.

To see the full list of children's books go to our website's library listings.

If you'd like to borrow any of these or anything else, please email us or call (02)9841 4410.

Happy Reading!

New pages posted to DS NSW website on "Dual Diagnosis"

Some people with Down syndrome live with more complex needs for support, complicated by other conditions that occur in other people too. Sometimes families are aware that their son or daughter is different from most people with Down syndrome for some time before they they are able to confirm just what makes up their particular range of conditions.

"Diagnostic overshadowing" refers to the difficulties that can be encountered in identifying features that are caused by the presence of Down syndrome, and those that are caused by an additional condition.While it can be daunting to confront yet another label or diagnosis, the process of identifying the contributing factors does not change the person - its purpose should be to throw light on useful interventions and supports, and perhaps to qualify the person to receive the support services they need.

"Dual diagnosis" can refer to any two conditions co-existing.

These two new web pages on the Down Syndrome NSW website provide information to support families dealing with complex needs that might be manifest when a person with Down syndrome is also living with either a mental health concern or an Autism Spectrum Disorder.

Down syndrome and mental health
This page provides links to resources on mental health and Down syndrome, and to appropriately experienced and qualified mental services available in NSW.

Dual Diagnosis: Down syndrome and Autism
While it is clear from clinical experience and research that a small proportion (around 7 %) of people with Down syndrome also meet the international criteria for Autism Spectrum Disorder, the diagnosis is complex and requires an experienced and expert clinician. It is recommended that a consultation be sought with an appropriate specialist such as a developmental paediatrician, a specialist physician in developmental disability medicine or a psychiatrist.

The links on this new page on our website provide information, but are not a substitute for appropriate professional consultation.

Your suggestions for additional links for either page are welcome - contact info@dsansw.org.au

Library Thursdays: WDSC Abstracts and Papers

The library in our new premises looks great and we're back to normal with loans.
Available to the library this week are abstracts of all the papers presented in Dublin and also copies of reports from some of the poster presentations.
These include:
Adults with Down syndrome are at reduced risk of cutaneous melanoma: results from a French study by Dr. Daniel Satge, France
Diagnosis communication by Dr Carlo Baccichetti, Italy.
Diagnostic Overshadowing: The role of the multidisciplinary team by Donna Heerensperger, Canada.
Oral Health Promotion - Working together - The way forward by Dr. Maura Cuffe, Ireland.
A survey of experiences of people with Down syndrome in New Zealand by Dr Susan Foster-Cohen, New Zealand.
Comparative Study of the Social activities, participation and friendships of Irish adolescents with Down syndrome attending mainstream and special schools by Loraine Matthews, Dr. Shay Caffrey, Ireland.

Investigating the early reading abilities of children with Down syndrome by Anne van Bysterveldt, New Zealand.
Developmental Trajectories for Young Children with Down syndrome by Stephanie Bennett, UK
Wellbeing for children and young people with Down syndrome in New Zealand: A conceptual framework by Maree Louise Kirk, New Zealand.
Phonological awareness of children with Down syndrome: Its role in learning to read and the effectiveness of related interventions by Dr Chris Lemons, USA.
A New Zealand resource to support successful inclusive transition of children with Down syndrome into daycare and school by Mrs Zandra Vaccarino, NZ
Lifestyle of people with Down syndrome in the south region of Brazil by Prof. Alexandre Marques, Brazil.
Study to evaluate the efficacy of The Listening Program in improving auditory skills and speech for children with Down syndrome by Gwyneth Jeyes, UK.
Building a young child's language skills with pain and suffering by Ms Mary Frances Edwards and Ms Diane Lowry.
Structuring a social communication group for young adults with Down syndrome by Diane Lowry & Caitriona Ryan
Toys that stimulate language by Diane Lowry & Mary Frances Edwards, Ireland.
Trying to get over prejudice on Down syndrome by Tomko Hazegawa, Japan.


Many of these are single pages or pamphlets, a few are longer. None are from the keynote speakers, but the abstracts of their presentations are included in the abstract book.


Let us know if you'd like to look at any of these.
Also the library's direct line phone number is: (02) 9841 4410