Saturday, 28 February 2009

Sunday Brunch with Gerard O'Dwyer: ABC Radio, 702

Gerard O'Dwyer, who won the best actor award at Tropfest last weekend for his performance in Be My Brother is having a big week - many congratulations, lots of media, and interest from film festivals and film makers. Tomorrow morning (Sunday 1st March) on ABC Local Radio (702 in Sydney), Simon Marnie will visit Gerard at home for Sunday Brunch, at 11.00 am.

Today's Sydney Morning Herald included a free DVD of all of the Tropfest finalists, and this interview with Gerard and the film's director, Genevieve Clay, by film writer Garry Maddox, on page 2. It is accompanied by a fabulous photo of the famous pair.

Prof William Mobley appointed Chair of Neurosciences, UC San Diego

William C. Mobley, MD, PhD – a clinician and researcher who is internationally known for his work on degenerative diseases of the central nervous system and the neurobiology of Down syndrome – has been selected the new chair of the department of neurosciences at the University of California, San Diego School of Medicine. Mobley, currently the John E. Cahill Family Professor in the department of neurology and neurological sciences at Stanford University Medical Center, is expected to begin at UC San Diego on April 1.

“We are truly fortunate that Dr. Mobley will be at the helm of the prestigious team of researchers and physicians in UC San Diego’s neurosciences department, one of the top-ranked neurosciences departments in the nation for NIH funding,” said David Brenner, MD, Vice Chancellor for Health Sciences and Dean of the School of Medicine. “It takes a unique person, one with expertise in patient care, research and leadership, to direct this department. Bill Mobley is one of these rare people, and we expect him to play a key role both here at UC San Diego and within the area’s neurosciences community.”

UC San Diego’s neuroscience department is unique in that it includes both clinical neurologists and basic scientists. Together, they work in diagnosis, management, and research.

“UC San Diego’s neurosciences department has the ability to change the game for people with neurological diseases, and we intend to do just that,” said Mobley. “The researchers and clinicians here are the best in the world at what they do.”

Mobley’s research relates to the biological study of the nervous system, particularly actions and signaling that influence the survival of neurons, looking at how dysfunction of neuronal signaling mechanisms can contribute to developmental and age-related disorders of the nervous system. His special interest in the neurobiology of Down syndrome has brought important new insights to that disorder, including the identification of possible treatments.

The full text of the UC San Diego Medical Centre's media release is here.

Free Tropfest DVD in today's Sydney Morning Herald

Don't forget that the free DVD of Tropfest 2009 finalists comes with today's Sydney Morning Herald, so you can have your own copy of Be My Brother, the 2009 winner of best film , starring Gerard O'Dwyer, winner of the best male actor award!

Friday, 27 February 2009

Down Syndrome and You : revised booklet

The Canadian Down Syndrome Society has recently released a revised edition of its booklet for people with Down syndrome, Down Syndrome and You. Click here to download a copy.

Blair Williamson SCRUBS episode to air Thursday 5th March

Channel 7 is now broadcasting a double episode of SCRUBS each week, so the episode in which Blair Williamson has a role (see this post) is now scheduled for next Thursday, 5th March. The show is due to start at 10.30 pm but the episode "My Lawyer's In Love" appears to be screening second, at about 11.00 pm.
(Source: TV Week - we consult very widely for this blog!)

Thursday, 26 February 2009

Library Thursdays: Late, Lost and Unprepared

I was interested in reading Late, Lost and Unprepared: A guide to helping children with executive functioning (by Joyce Cooper-Kahn, Ph.D. & Laurie Dietzel, Ph.D., Woodbine House, 2008) because I had heard that people with Down syndrome have problems with executive functioning. This book is not specifically for people with Down syndrome, but it does seem to address some skills that may be of use to people with Down syndrome. Executive functioning is mental control and self-regulation to achieve a goal. This book lists the executive functions as: Inhibition, Shift (thinking and acting flexibly), Emotional control, Initiation, Working memory, Planning/organisation, Organisation of materials, and Self-monitoring. Many of these are considered areas of weakness for many people with Down syndrome. The second part of the book gives concrete strategies to help in each area. Many of the solutions are ones already suggested for people with Down syndrome--using visual prompts, routines, etc. However, it can be useful to see it presented in a different way. The book is very easy to read and skim. When needing a solution to a problem, it is possible to turn straight to the section and obtain a practical answer. The solutions may not be anything new to parents of people with Down syndrome, but I feel the book is useful and encouraging.
To borrow this book or any other from the library, just ask.

Working memory is discussed in Memory development for individuals with Down syndrome by Downs Ed UK.

Wednesday, 25 February 2009

26th Annual Charity Shield - some free tickets for DS NSW members

Come join Craig Wing (DS NSW Patron) at this year's Charity Shield match and cheer on the South Sydney Rabbitohs as they take on the St George Illawarra Dragons!

Saturday 28th February

8:00pm kick off @ ANZ Stadium

Only a limited number of free tickets available!

Dinner before the game from 4:30 - 6:30pm, North Strathfield

A bus will be provided to take everyone to and from North Strathfield and ANZ Stadium.

For further details or enquiries please contact Priscilla Leong on 9683 1900 or

From a grown-up sibling ....

Here is an interesting and thoughtful reflection from the older sister of a 48 year old man with Down syndrome, about their growing up together in a busy and well known British musical family.

Sally Beamish, a composer, was interviewed about her brother Christopher, by The Guardian (UK), published on Saturday 21st February 2009.

Tuesday, 24 February 2009

Bill Shorten to address the National Press Club about disability - 1 April 2009

Bill Shorten, Parliamentary Secretary for Disabilities in the Australian Government, is speaking at the National Press Club, in Canberra on 1 April, 2009 between 11.45 to 1.30 pm.
The lunch will be televised by ABC 1 at 12.30 pm on the day and repeated at 3.25 pm - see this link and look for "Bill Shorten" on 01-04-2009.

The registration form is also on this page for anyone is interested in going to the lunch.
Click here for Mr Shorten's media release of 20/02/2009, following his Adelaide roundtable with people with disability and carers.

Monday, 23 February 2009

Gerard O'Dwyer wins Best Male Actor at Tropfest

Actor, Gerard O'Dwyer won best male actor for his role in the winning film, Be My Brother, directed by Genevieve Clay. Congratulations to both of them and to the rest of the cast and crew. A DVD of all the Tropfest 2009 Finalists will be available with the Saturday Sydney Morning Herald.

Other related reports:

More than a Market Day - Wattle Grove, 29th March

Market Day

Wattle Grove Community Centre
Village Way, Wattle Grove

9.00am - 4.00pm, Sunday 29 March 2009

A small part of the very large crowd at Market Day 2008

• There will be something for everyone - variety of stalls, sausage sizzle, face painting, Easter show-bags, raffle, chocolate wheel and auction - lots of prizes to be won.

• Come along and have some fun and be pleasantly surprised by what you might find.

• All money raised goes directly to Down Syndrome NSW.

Information about Down syndrome will be on display.

All enquiries to Melissa Cotterill: 0418 162 544 or

A World Down Syndrome Day event.

Sunday, 22 February 2009

Filipino-Australian families sought for research project

Alex Higgins is a rehabilitation student completing research for an honours degree, at the University of Sydney by ....

" ...... conducting a research project on the use of early intervention services for families who are of Filipino-Australian descent and are caring full time for a child under the age of eighteen years who is diagnosed as having an intellectual disability.

The families can be single-parent or two parent families, however the child must have two Filipino parents irrespective of whether both parents are actively raising the child or not.

The method for this study will be to conduct structured survey interviews with representatives of the families. Each family is able to nominate who they feel bears the primary responsibility for caring for this child with a disability. "

If your family or a family you know might be interested in participating, please contact to be put in touch with Alex, and for further information.

Saturday, 21 February 2009

World Down Syndrome Day events for your diary: T 4321

World Down Syndrome Day 2009 is being celebrated on Saturday 21 March. The date signifies the fact Down syndrome is caused by nothing more than an extra chromosome - 3 copies of the 21st chromosome (or ‘3-21’).
Now in its third year, T4321 (or 'Tea for 3-21') is a simple way everyone in the community can mark this day and celebrate the achievements of people with Down syndrome as well as raise a few useful dollars to support children and adults with Down syndrome in achieving their full potential.

This year we invite you to again join in the celebrations with us by holding your own ‘T4321’ on or sometime around the 21st of March or by attending an event someone else has organised - look for them in your community too.

Here are details of the first T4321s notified to us so far:

Mornin’ Tea Open Day

Costa Azzurra Woodfire Restaurant
71 Princess Highway, Fairy Meadow NSW
  • Sunday 15th March @ 10:00am
Further details contact Tracy Barker on 0439 729 993
Click here to download the Mornin’ Tea Open Day flier

Morning Tea

at All Hallows Catholic Church

2 Halley Street, Five Dock

Sunday 29th March @ 11:00am (in the hall next to the church)

More responses to Brendan O'Reilly on a disability levy

Four further letters of response supporting the need for a disability levy, attesting to the inadequacy of current services, and wondering at the timing of Brendan O'Reilly's comments as he nears retirement as Director-General of the Dept of Ageing, Disability and Home Care, are publishing in today's Sydney Morning Herald, under the heading:

Eleventh-hour honesty on disabled is better late than never

Friday, 20 February 2009

Siblings .....

Jennifer Groneberg (author of Road Map to Holland) has started a discussion about sibling relationships, on Pinwheels, and is inviting comments from families.

Did the D-G really say that?

A letter to the Sydney Morning Herald today (20th March 2009), commenting on this article published yesterday:

Depth of disabled neglect
I almost toppled off my chair reading "Official calls for disabled care levy", (February 19). Did the outgoing director-general of the Department of Ageing, Disability and Home Care all but admit that the disability service system has been neglected for so long that he has concluded insurance fraud is preferable to the consequences of being cared for by the state?
Nerryl Brown Bilgola Plateau

Thursday, 19 February 2009

Retiring DADHC D-G calls for disabled care levy

Adele Horin
Sydney Morning Herald, February 19, 2009

A tax levy should be imposed on all Australians to fund lifelong care of people with severe disabilities, the state's chief disabilities bureaucrat says.

Brendan O'Reilly, director-general of the NSW Department of Ageing, Disability and Home Care, has called for a levy, similar to Medicare, to be in place within four years.

"It's wrong that a person who is born with a health problem, say a hole in the heart, has a system that guarantees them access to services, but a person who is born with, or acquires, a disability does not," he said.

Mr O'Reilly, who will retire in seven weeks, has run the country's biggest disability agency for five years. Speaking at a disabilities forum, he said his views were "personal" and did not represent government policy.

He said 6 to 8 per cent of Australians had severe or profound disabilities and most taxpayers would be willing to pay a small levy for their lifelong care. "My experience is that Australians want people who've suffered disabilities through no fault of their own to be well cared for and given opportunities."

His call coincides with a recommendation by the Federal Government's National Health and Hospitals Reform Commission for a Denticare income levy of 0.75 per cent.

Mr O'Reilly said Australia had insurance schemes for the lifelong care of people who acquired a disability as a result of a car accident and, through WorkCover, there was support for people who were injured at work.

But people born with a disability, or who acquired it through sport, leisure or an accident at home, "have to fight for every service, and if they can eventually navigate the service system, there is still no guarantee their needs will be met".

The NSW Government has faced abiding criticism over the lack of supported accommodation for people with profound intellectual disabilities.

Having starved the area of funds for more than a decade, the Government in 2006 boosted funding by $1.3 billion over a five-year period.

Mary Lou Carter, of the Carers Alliance, said that in the past two years only 51 of the more than 16,800 people who needed supervised accommodation and were living with elderly parents had been accommodated in a group home.

"Governments are loath to impose an extra tax but it's abundantly clear the need has not been met," she said.

In an interview, Mr O'Reilly said he had told his wife that if he fell from a ladder when cleaning the gutters and was seriously disabled, she should bundle him into the car and roll it into the house "because there's a system that covers car accidents".

Mary Lou Carter's comment on the article:

The most important consideration to any levy for disability care is to ensure that it is quarantined for that specific purpose ...... Remember the water levy .....

Previous posts on disability insurance schemes:

Library Thursdays: Interactive Reading Books

According to Sue Buckley and Gillian Bird of DownsEd UK (in their book Reading and Writing for infants with Down syndrome (0-5years)) "Teaching reading to teach talking is probably the single most effective intervention for helping children with Down syndrome overcome their learning difficulties." The book describes a method for teaching reading using the whole word method. In our library, there are other resources outlining similar methods such as Teaching Reading to Children with Down Syndrome by Patricia Oelwein and the Down Syndrome Society of South Australia's Teaching Reading Part A. Most start with simple flashcards that you make and progress to simple books. DownsEd International have an online reading program available (See and Learn) and their Development in practice- Speech and language activities for preschool children with Down syndrome also includes reading activities.

New in this week to the library are some interactive books published by Greenhouse Publications. They use velcroed visuals to allow pre-reading matching activities, prompts
to aid reading and sentence construction
as well as teaching various concepts.
These resources can give you ideas on how to create your own reading materials.

Titles available are: I go to school, Things I do at home, Who's on first, and How do I feel?
To borrow any of these resources, just ask.

Wednesday, 18 February 2009

Sutherland Titans Football Club - registrations Saturday 21st Feb

Sutherland Titans Football Club is a soccer club for children and adults with special needs. They have asked us to let interested players know that their second registration day for the 2009 seaon will be this weekend:


Harry Denning Soccer Association, Bates Drive Kareela
Sutherland Titans Grading Day (and Late Registrations)

Wear comfortable clothes (uniform or other comfortable clothing) and wear soccer boots and shin pads. Don’t forget hat and sunscreen!

$50 for returning members
$80 for new members(includes uniform)

Email for further information:

or contact: Stewart on 0434 222 309, or Bree on 0424 423 988

Innovative Accommodation Framework document - available on DADHC website

The Innovative Accommodation Framework document referred to in this post has now been posted on the Dept of Ageing, Disability and Home Care website, here. It is a 14 page booklet that can be downloaded from the website.

Print copies can be ordered from your local DADHC regional office, contact details here.

We have not yet had time to read the document, but we will be looking at it thoroughly, and with great interest.

2009 Special Olympics World Winter Games - highlights

The 2009 Special Olympics World Winter Games were held in Boise, Idaho last week. Not surprisingly, Australia did not field a team, but over 2000 athletes from around the world participated.

The Idaho Statesman provided media coverage, including this highlights video, in which many people with Down syndrome are seen to be having the time of their lives. (It might take a while to load).

Many more highlights are available from the Special Olympics Live website.

Tuesday, 17 February 2009

Response to D-G's letter on supported accommodation

Brendan O'Reilly, Director General of the NSW Dept of Ageing, Disability and Home Care, (see this post from last Saturday) did convince this letter writer (Letters to the Editor, Sydney Morning Herald, Monday 16th February 2009) that DADHC is going anywhere near far enough to meet the need for supported accommodation for people with intellectual disabilities:

Don't pretend you care
I acknowledge that Brendan O'Reilly's department has been chronically underfunded for decades (First Word, February 14-15) and that he has had a "loaves and fishes" task trying to make the money go round. However, I object to the bureaucratic spin that would have your readers believe O'Reilly has a responsive department and that services are well in hand, if not improving and increasing, as he suggests.

What O'Reilly should be telling us is that of the 315 new supported accommodation places created in the past 2½ years, only 51 have gone to disabled people coming from the family home. The rest have gone to people coming out of the Department of Community Services and the prisons. Of the 51 new places, only 10 have been for the Sydney metropolitan area. In fact, more ageing parent carers have died in this period than have new places been made for their family members. Only O'Reilly could call this "growth".

I am now in my fourth decade of caring for my much loved severely intellectually disabled son. I want my fellow Australians to know that we have a crisis of unimaginable proportions on our hands.

Lifelong carers of middle-aged disabled sons and daughters are dying without having had any experience of retirement and without the peace of mind of knowing what will happen to their family member after they are gone. O'Reilly's department provides accommodation and support for about 3 per cent of the total number and the rest stay at home indefinitely. Other developed countries have services in place, but our country doesn't even have a plan for them.

It is time that we debated whose responsibility are these Australian citizens. After all, a disabled child can come to any family at any time. Having the correct support services in place gives the whole community a safety net; not having them in place diminishes us all and makes our society less civil.

Meanwhile, I send my best wishes to O'Reilly for a happy retirement. We would like to join him in retirement if he could just find us a supported accommodation placement for our son, whose name was put on the department's register 28 years ago. About 15,000 families are ahead of us.

Estelle Shields

Monday, 16 February 2009

Special Olympics NSW - Inner West region launched

Special Olympics NSW has recently established a new Sydney Inner West Region, offering a range of sports activities.

Registrations are now open, and sports have begun. The Inner West Region is sponsored by Petersham RSL Club.

The Sydney Inner West region was officially launched on, appropriately, 3rd December 2008 - International Day of People with a Disability.

Volunteers, coaches, and sports assistants are needed, as well as athletes.

Click here to download a brochure.

For further information, print brochures and registration forms -

Contact: Kristen Fitzpatrick

Community Development Officer
Special Olympics Australia
PO Box 62
Concord West NSW 2138

Phone: 0424 185 565; Fax: 02 8732 1629

Family Advocacy workshop with Janet Klees (Deohaeko)

Taking the next step....putting the theory into practice

9.30 am - 2.30 pm,Tuesday, 10th March, 2009

West Ryde (Sydney)

Presented by Janet Klees, this workshop will be of interest to anyone who wants to move beyond the theory of what constitutes a good life for a person with disability, to how to go about actually creating it.The day will be about family driven initiatives for individually supported lifestyles and will include a discussion of the principles and practices needed to implement the thinking.

The workshop will be particularly useful for families and allies of people with disability who do not currently have support funding or financial resources to draw on.

Janet Klees is known for her work with the Deohaeko Support Network in Ontario Canada,and her two books which are directly rooted in the Deohaeko experience - We come bearing gifts and Our presence has roots.

Sunday, 15 February 2009

The BLACK TIE CHARITY BALL IN THE 'GONG is back for 2009...

Black Tie Charity Ball

6:30pm, Friday 20th March 2009

Lakeside Function Centre, Illawarra Yacht Club

(1 Northcliffe Drive, Warrawong)

Tickets $60 each (proceeds to Down Syndrome NSW)
  • champagne & canapes

  • three course dinner

  • live entertainment

  • charity auction & raffle

For enquiries and ticket sales please contact
Priscilla Leong Ph: 02 9683 1900 Mob: 0402 503 885 Email:

For further details contact

Tracy Barker on 0439 729 993 Email:

"Be My Brother" selected for final 16 at Tropfest 2009

News from Accessible Arts NSW:

Be My Brother, a short film made by Genevieve Clay has been selected as one of 16 finalists from over 600 entries at this years Movie Extra Tropfest, Australia’s largest short film competition (22nd February, Sydney).

Be My Brother stars aspiring actor, Gerard O'Dwyer as Richard, a young man whose charm and charisma challenges the prejudices of a stranger waiting at a bus stop. When he impacts on the stranger’s world, he also impacts on the heart and mind of someone else close by.With Gerard O'Dwyer in the leading role, Tracie Sammut as camera assistant, Georgia Cranko as unit manager and Gordon Crane as gaffer, the filmmaking experience of Be My Brother presented an opportunity for creative people with disabilities to experience working on a film set in the capacity of either crew member or performer.

Genevieve met Gerard while filming a documentary for Down Syndrome NSW, as part of the Up, Up and Away Project, and was instantly inspired by his vivacious personality and photographic memory for dialogue. She decided to write a script for him to act as the lead, in order to create a platform to showcase his talent and ability as an actor.

Click here for the full story and screening details from Accessible Arts.

Saturday, 14 February 2009

Long term supported accommodation: letters to the editor

The Sydney Morning Herald's letters to the editor pages have featured these two letters about the provision of government funded, supported long term accommodation for people with disabilities in NSW, in recent days:

February 11, 2009

One place found in group home. Thousands still wait

Your article about the young woman with mental illness who has been allocated supervised accommodation is a happy one for her and her family ("Obeid says he doesn't want credit", February 9).

Perhaps parent-carers and families of people with mental illness and intellectual disabilities who need 24-hour supervised accommodation can contact the Herald so a list may be compiled of the urgent and chronic need for such accommodation. In NSW in the past two years only 51 of the more than 16,800 people who need supervised accommodation and are living with elderly and ageing parents were accommodated in a group home.

This problem has been severely neglected for more than 30 years and is the single most pressing need that carers of people with disabilities want addressed. Parents are dying without knowing where, how and by whom the people they love will be cared for.

I urge the Herald to follow this issue and champion the people who are enervated by the nature of what they do and have done for decades; people who no longer have, or never had, the capacity to demonstrate and engage in letter-writing campaigns. Only by continued coverage of this issue will anything change. It needs more than sporadic coverage that occurs when a family pushed to the edge is forced to make their family member with a disability homeless, because they can no longer provide the 24-hour care they need.

For a government to be so derelict that families are forced to take this damaging step is immoral.

Mary Lou Carter

February 14, 2009

Government finds more places for the disabled

I would like to clarify some of the points made by Mary Lou Carter (Letters, February 11).

The Department of Ageing, Disability and Home Care is very aware of the need for more supported accommodation for people with a disability and their families, as shown by the commitment to increase and improve services in Stronger Together, the NSW Government's $1.3 billion, 10-year plan for disability services.
In its first five years, 990 accommodation places will have been established, increasing the number of supported accommodation places by 20 per cent.

Since May 2006, 315 more people have received accommodation support services, including places for people with a disability who are no longer able to live in their own home, young people leaving the care of the Minister for Community Services and people leaving the criminal justice system.

The state and federal governments are jointly providing more accommodation places over the next four years for people with a disability who have an older carer.

More than 650 places will be established. Capital funding of $33.68 million has been committed to this project.

The department has recently released the Innovative Accommodation Framework, which provides a new direction for the range and type of supported accommodation delivered. This has come about by us listening to people with a disability and their families, and taking on board their views.

We are developing a policy to give families and carers a clear way to register their immediate and long-term needs for accommodation support, which will assist in planning for growth in disability services.

These initiatives clearly demonstrate the State Government's commitment to improve services for people with a disability.

Brendan O'Reilly
Department of Ageing, Disability and Home Care

  • The Innovative Accommodation Framework document does not appear to have been posted to the Department of Ageing, Disability and Home Care website as yet.

Precision Academics:90+ Scaffolded Assignments on CD ROM

Special education publisher, Precision Academics has increased the range of resources on offer on the Precision Academics Resource Bank CD, adding more than 90 scaffolded assignments for high school students working towards Life Skills outcomes.

Each assignment covers a specific high school topic, from almost all key learning areas taught at high school. They range from 4 to 8 pages, and include a work sample and cross curriculum assessment indicators taken from the NSW Board of Studies Life Skills Outcomes across all Key Learning Areas.

The 90+ scaffolded assignments target high school students who need highly structured and highly modified material, and are the ideal companion to the 400+ more general and longer workbooks that make up the bulk of the program. As of February 2009, all of the CD-Roms distributed will have the expanded program on them, included at no extra cost.

For Down Syndrome NSW members who purchased the program before these scaffolded assignments were added, Precision Academics is offering to provide them with the newest edition, at a nominal cost of $25. Ken Gray, from Precision Academics will be writing to them shortly to let them know of this opportunity.

Precision Academics ©
Adapted Education Programs
Mobile: 0428 192 986 (Australia)

New dance group in Artarmon: Dance Chance

Following the broadcast of the documentary, The Music in Me, about the northern Sydney dance group The Merry Makers in mid 2008, on ABC1, a number of new dance groups have been established in other areas, after consultation with The Merry Makers. Here is the latest one to come to our notice:

A new Dance Group for people with a disability - everyone is welcome, all ages,, boys and girls

Saturday afternoons from 2.30pm to 4.30pm
during school terms
in Artarmon (Sydney)

Classes expected to start by the end of February 2009

For more information please contact: Pam 02 9456 1165

Click here for a flyer you can print and pass on to friends.

Friday, 13 February 2009

Director General of NSW Dept of Ageing, Disability and Home Care to retire

DADHC Media Release Date: 11 February 2009

“The Director General of the Department of Ageing, Disability and Home Care, Brendan O’Reilly, has informed me of his intention to retire from the NSW Public Service,” Minister for Ageing and Disability Services Paul Lynch said.

“Brendan has been a credit to the public service and has placed the Department in a strong position to continue delivering a high standard of service well into the next decade,” he said.

“Brendan has earned the respect and praise of his colleagues over a long and distinguished career. I thank him for his advice, leadership and professionalism.

“I wish Brendan well in his retirement and he and his family all the very best for the future,” Minister Lynch said.

Mr O’Reilly said, “this has been a difficult decision and one to which I have given a great deal of thought.

“Although the position of Director General of DADHC is a challenging one, I have very much enjoyed my five years at its helm.

“I have gained great inspiration from people with a disability, their parents and carers. They are the true champions of the disability sector.

“As Director General I have been blessed in seeing, almost on a daily basis, the work of so many outstanding and committed staff; staff who freely give of their time, patience and expertise in an attempt to improve the lives of the most vulnerable members of our community.

“I owe so many a great deal for the support given to me over the past five years. Words simply cannot express my thanks and appreciation for the work you do,” said Mr O’Reilly.

Mr O’Reilly will begin his retirement after a period of leave towards the end of April.

Visual supports work for adults too ......

Linda Hodgdon is a speech and language pathologist who specialises in working with people with autism, particularly using visual supports for communication. She says on her home page,

My passion is to find simple solutions to communication challenges.

Much of her work is also valuable for others with communication disorders, including those with Down syndrome. Among a range of excellent resources on her website, the monthly online newsletter, Another View always provides useful insights and tips.

The current issue (February 2009) includes Visual Supports Are Not Just for Little Kids a concise and straightforward explanation of how and why visual supports work for adults as well as children, along with helpful tips about making them acceptable to an adult user.

As Linda says: Do YOU ever look at your own calendar or day planner to help you remember what is happening in YOUR life?

Combining Linda's insights with everyday technology for adults might be another way of making acceptable, non-intrusive visual supports - see this post about using an iPod, for example.

A list of DS NSW Library items on visual learning and support is here.

Thursday, 12 February 2009

Amended url for Georgia's Smile

Georgia's Smile montage and song has a new url on You Tube:

(Click here for the original post).

Library Thursdays: Safe and Secure

Thinking about what will happen to our children with Down syndrome after we die is never easy. Most of us try to avoid thinking about death but it does lurk in the back of our minds as something we really should attend to. New to our library this week is a great resource that helps us deal with this issue. Safe and Secure: Six steps to Creating a Good Life for People with Disabilities, Western Australian Edition (written by Al Etmanski with Jack Collins & Vickie Cammack, PLAN, 1998) is a step by step guide to planning for the future. The first edition of this book was written by the co-founders of Planned Lifetime Advocacy Network (PLAN). PLAN is a Canadian organisation formed by parents to support and advocate for families planning for the future. This edition has been revised with input from PIN (Planned Individual Networks Inc.) in Western Australia (a similar organisation to PLAN) to make it relevant to Australian families.

The six steps are: Clarifying your vision (deciding what you want), Building relationships (setting up support networks somewhat like Circle of Friends or what the Up, Up and Away project does), Controlling the Home environment (housing options), Preparing for decision-making (setting up supports for your child to make the inevitable decision he/she will have to make in life), Developing your will and estate plan (options with wills and trusts) and Securing your plan (benefits of organisations such as PLAN and PIN). Each section includes stories of WA and Canadian families--the processes they went through, the choices they made and how it all worked. Worksheets are included to help you think and clarify what you want, what your children want and how it can be achieved.

I think that it is a great book even if sometimes I felt that it was a plug for PLAN and PIN (which sound like great organisations and provide great models). It is a wonderful resource that makes it easier to get around to dealing with the future as well as gives ideas for creating programs that will improve our children's options.

Other library resources from PLAN:
A Good Life: For you and your relative with a disability by Al Etmanski (2000).
The Ties that Bind DVD (2004) Follows a young man and his family planning the future. (Companion website

To borrow these or any other library resource, click here.

Wednesday, 11 February 2009

2 workshops for teachers - registration is now open

Details are now available for the following workshops, to be presented by Down Syndrome NSW in March. Registrations are now open:

“Playing to Their Strengths”

A one-day workshop for primary school teachers and school personnel working with students who have Down syndrome.

9.30 am – 3.00 pm
Wednesday 4th March 2009
Quality Inn The Willows

512 Pacific Highway, Wyoming (NSW Central Coast)


9.30 am – 3.00 pm
Friday 20th March 2009

Comfort Inn Hunts Liverpool

Corner Hume Highway & York Street, Liverpool

Cost for each workshop:
$99 per person (DS NSW members)
$132 per person (non-members)

(includes GST, morning tea, light lunch)


  • Jill O’Connor, Director of Information and Services
  • Judy Davidson, Parent Support Manager
Enquiries to Siena O’Brien at or phone 9683 4333

Monday, 9 February 2009

Professor William Cohen

The Down syndrome "community" around the world will mourn the loss of Professor William Cohen, who died in the US on Friday 6th February.

Dr Cohen was renowned internationally as a developmental paediatrician, a teacher in medical and parent education, a writer and conference presenter. He was a co-founder of the US based Down Syndrome Medical Interest Interest Group, and co-authored guidelines on health care for people with Down syndrome.

If you have a child with Down syndrome who has benefited from good health care in the last thirty years or so, you can be sure that Bill Cohen had a hand in its quality, through his many activities on behalf of children with Down syndrome.

The National Down Syndrome Society's tribute can be read here.

Sunday, 8 February 2009

Gifts: photo montage on You Tube

If you enjoyed the book Gifts, then you might also enjoy this montage of photos taken from it.

And this article about one of the contributors, Nancy Iannone.

A second edition of the book is expected to be published late in 2009.

Saturday, 7 February 2009

Sydney summer

This summer in Sydney is hot, hot, hot - this weekend temperatures into the 40s (C) are expected, again!

These photos are from a few weeks ago, early in summer. The Up Club celebrated Christmas together, at Neilsen Park - a lovely beach and grassy Park on Sydney Harbour - what a great choice. Of course they had their sun-screen on ...

Down syndrome; Down syndrome; Down syndrome

Friday, 6 February 2009

Actor Blair Williamson co-stars in an episode of Scrubs, Channel 7

SCRUBS currently screens 10.30 pm Thursdays, 7 Network

Blair Williamson plays Craig a patient of Dr. Cox, actor John C. McGinley (in "My Lawyers in love", Season 8, episode 8). Now that Dr. Cox is Chief of Staff his duties are keeping him from patient care. He promises Craig he will be there for a biopsy of his lymph node, but doesn’t show. Craig is angry, all the while J.D., Zack Braff, is consumed with his own sparse beard.
National Down Syndrome Society (USA), e-Newsletter, February 2009

On US email lists, where the episode has already screened, people have commented that the character Craig having Down syndrome is not actually explicitly stated - it's not what the episode is about. He's a patient, and just happens to have Down syndrome, and it's well done. Of course, with John McGinley being the US patron of Buddy Walk (see this post), that's what you'd expect.

SCRUBS Season 8 began screening this week, so if the schedule remains unchanged, we'd expect it to air on 19th March, but we'll confirm closer to the date.

Click here to see Blair Williamson's IMDB entry.

Thursday, 5 February 2009

Library Thursdays: Widening the Circle

A couple of weeks ago we blogged about inclusion resources, but a book has just arrived in the library that I feel should be mentioned. Widening the Circle: The Power of Inclusive Classrooms by Mara Sapon-Shevin (Beacon Press: Boston, 2007) is an inspiring book about why inclusion is so important and what needs to happen so that it can work. Sapon-Shevin makes a case that inclusion in education is an absolute necessity if we want the world to be able to work together and solve its problems. However, inclusion is not really workable without changing the current educational system for all. She addresses the difficulties facing inclusion--the culture of competitive learning, misconceptions, lack of supports but she also stresses the benefits for all (backed by research). And she gives examples of classrooms that are successfully inclusive. She talks about strategies such as Circle of Friends, You can't say you can't play, Responsive Classrooms, Cooperative Classrooms, Differentiated Instruction, Peer Teaching etc. She also mentions important indirect elements--inclusion in extra-curricular activities, a culture of valuing diversity, and teaching social skills, that help make inclusion work. The book is very readable and there are interesting discussions of issues. I especially enjoyed the examination of the philosophy that in successful inclusion you can't tell that anyone in the class has a disability. (The author argues against this.) I did enjoy the book and hope it will be read by people who can change the culture and structure of classrooms. Parents interested in inclusion or education will find it interesting, but I hope that teachers, student teachers, principals and anyone else who can make changes happen will also take the time to read it.
To borrow this book or any other in the library, email us.
Also available from the library:
You Can't Say You Can't Play by Vivian Gussin Paley
Circle of Friends DVD or book.
Downs Ed have online a great book on differentiating the curriculum.

A Journey into Grand-Motherhood

"Nan P" is the first-time grandmother of a nearly one year old little boy, Cathal, who has Down syndrome. Her blog is for family, friends, and for other grandparents. She is located in Dublin, so some of us just might get to meet her in August, at the 10th World Down Syndrome Congress.

In her profile, published on A Journey into Grand-Motherhood, she says:

I was promoted to Grand-Motherhood on the 10th March 2008. Though I did accept the promotion with joy and even trepidation, nothing could prepare me for the reality of this important position:

  • Cathal is my first grand-child.
  • Cathal has Down syndrome.
  • Cathal has a dodgy heart.
  • Cathal is the new love in my life.
Grand-Parenthood should come with a big-lettered label: “WARNING: STRONG EMOTIONS INCLUDED” -- This blog is a record of my journey through this new step in life. I hope that it may be of help to other grand-parents, and any family member. I look forward to comments and feedback.

On 4th January she posted "Calling All Grandparents", about an event she has planned in Dublin - the introduction will resonate for many other grandparents.

We have been in touch by email, and Nan would be delighted to be contacted by other grandparents - an email link is available from the blog profile.

Wednesday, 4 February 2009


NSW Companion Card

The NSW Companion Card (providing free access to venues and events for the companion of a person with a disability) will be managed and distributed to eligible people with disabilities by National Disability Services NSW.

You can now call 1800 893 044 for further information about eligibility, and to have an application pack mailed to you. The card is issued to the person with a disability, not to a carer.

The first cards are due to be issued in March. Applications take about 8 weeks to be processed after lodgement.

  • Continence aids
The application form for continence aids, under the Continence Aids Assistance Scheme, and guidelines for applying are now available online, at:

Monday, 2 February 2009

A mother’s plea - about a very questionable decision

Sometimes we just need common sense to prevail over everything else. Sarah Coutts's mother is her best advocate - she does know what is in Sarah's best interest. Sarah does have Down syndrome, but her health is unusually complex and fragile for any child, including most children with DS. No parent should have to fight bureaucracy like this - especially a family who already have so much to deal with and are doing it so well. Exceptions can and should be made.

Maitland Mercury
Rebecca Berry,

(reproduced with the permission of the Maitland Mercury)

Sarah Coutts’ face lights up when she talks about her friends and teachers at Martins Creek Public School.

Although she is 13 in April, Sarah wants to stay in Year 6 at the little school with only 12 students where she feels safe and secure.

Sarah has Down syndrome and a range of complex health problems including a heart and lung condition, which means she suffers from fatigue and is fed through a tube into her stomach.

She is tiny for her age, weighing only 24kg and has the developmental level of a 4-year-old.

Despite all this, the State Government has refused the family’s pleas for Sarah to stay at primary school.

Sarah’s mother Sue is now calling for compassion from the Government and urged minister Verity Firth to come to Maitland to meet Sarah.

For two years, Ms Coutts has battled government departments, gathered piles of research, attended countless meetings and kept detailed notes of her fight to keep Sarah at her much-loved school.

“We want Sarah to stay at Martins Creek School until she is 16,” Ms Coutts said.

“Travelling to high school would be detrimental to her health, plus she needs constant support throughout the school day.

“She would not cope with the environment of a high school with 900 students.”

Ms Coutts said the long and stressful fight for Sarah, adopted when she was six weeks old, has been all consuming for her and the rest of her family.

“This is not something I went into lightly. I am doing this because I know it is the right thing for Sarah, a unique little person,” she said. “Sarah’s cardiologist and paediatrician thought it was a good idea for her to stay where she is and at first I think the education department was surprised by my request.

“I looked at other options for Sarah, attended lots of meetings and listed all the benefits and negatives for her.”

Ms Coutts says it is cruel and unfair for Sarah and her family to suffer through the process.

“I received a letter from the Department of Education which I read as permission for Sarah to stay at her school. I also had an agreement with (former education minister) John Della Bosca after meeting with him.

“But I have since received a letter from Verity Firth’s office telling me that our request is not supported because it is not in Sarah’s best interests.”

“We have the support and backing of the Down Syndrome Association and there is no legislation that states Sarah can’t stay where she is with the community that loves and respects her.

“There cannot be a decision about her future until the minister meets Sarah and sees her at school to understand how much she loves it.”

Carers NSW invites carers to "Have your say" about recent carer payments

Carers NSW is the peak body for carers of the aged, and those with chronic illnesses, disabilities and mental illness in NSW. They regularly seek input from carers to inform liaison with government, and others with an interest in caring. This request from their current online news pages might be of interest to families of people with Down syndrome:
With the one-off government payments going out to carers, seniors and other pensioners this fortnight, Carers NSW wants to know what carers think about the payments.

Carers receiving the Carer Payment will have received a one-off lump sum payment of $1,400 for singles and $2,100 for couples.

Carers receiving the Carer Allowance will also have received $1,000 for each eligible person being cared for.

How will this payment(s) assist you? How do you feel about it?

Carers NSW is seeking comment to inform their own policy and Government policy on carer views of the payments. While responses may be referred to, the writer will not be referred to or identified. If you’d like to share your thoughts, drop a line to

Sunday, 1 February 2009

Specs4Us - Australian distribution arrangement

Specs4Us make spectacle frames specifically designed to provide a good, comfortable fit for children with Down syndrome, to accommodate the difficulties commonly encountered in keeping the glasses in just the right place to maximise correction of vision, and to keep them on. The website gives full details and illustrations.

We have mentioned the US based company previously in a 2008 Newsletter, but there was no Australian distributor at that time. Now a Queensland optometrist (who has a family member with DS) has made an arrangement with Specs4Us to supply these frames to children across Australia at cost price (the special deal is for frames only). This doesn't make them particularly cheap as they need to be shipped from the US, but it will mean that families can access them easily and as cheaply as is possible.

Contact DS NSW on 02 9683 4333, or email for further details.