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.