Address details

Down Syndrome NSW
Level 6/410 Church St, North Parramatta
9am-5pm Monday - Thursday
T: 9841 444

Friday, 30 October 2009

"ADHC"; revised supported accommodation document; new supported accommodation places

Since the creation of the "super-department" of Human Services, the Department of Ageing, Disability and Home Care is no longer a government "department", and will be known as NSW Ageing, Disability and Home Care (ADHC). Its CEO is Jim Moore, who was previously called the Director-General.

ADHC has published its revised protocols for allocating supported accommodation places in non-government services that are ADHC operated and funded. Read the new ADHC document here: Allocation of places in supported accommodation policy and procedures 

These extracts briefly address the most common enquiries we receive from families, about availability and the process for accessing ADHC supported accommodation (of course the document includes a great deal more detail):

4.1 Guiding principles ..... (4) A person’s needs are more likely to be met effectively by making early contact with DADHC, before any crises occur. Carers may contact the regional Information, Referral and Intake teams at any time to discuss their circumstances and to explore the support options available to them.

5.1 Requesting a supported accommodation place ..... Where a person with a disability is eligible for and seeks supported accommodation, the case manager will confirm the person’s eligibility for supported accommodation and consider all other support options with the person and his or her family/support person/guardian. Once this has occurred, the case manager will submit a written request for a place on the Register of Requests for Supported Accommodation. The person with a disability will be notified in writing that his or her request has been added to the register.

5.1.1 Indication of future service need ..... A person may indicate to DADHC if they consider they will have a future need for supported accommodation. This information will be recorded by DADHC and may be used in future planning. When a client notifies DADHC that their indicated future need has become an immediate need services will be offered on the basis of assessed need, priority and available places.

5.7 Creating a shortlist [for a vacancy].....

(d) Priority and in order:

• homeless or effectively homeless, or
• at imminent risk of homelessness – the person’s support system has broken down, or
• the person’s own support needs have increased and the family is unable to continue to provide support in the family home, or
• the person’s primary carer is older than 65, or who has ageing related support needs, or
• the person is in receipt of emergency funded support and has applied for supported accommodation, or
• the person or placement is at risk, or
• a person requesting to move from one supported accommodation place funded by DADHC to another supported accommodation place funded by DADHC where the current place does not adequately support a person’s living arrangements or social connections, or
• a person exiting from the Integrated Services Project (ISP). 

• A person whose current living arrangements are not likely to be sustainable or whose current placement is showing early signs of breaking down.

• For any other reason not mentioned above.

The continued roll out of new supported accommodation places under the Stronger Together initiative is announced in this Ministerial media release (8th October).

Thursday, 29 October 2009

Library Thursdays: Up Up and Away DVD and Manual

Following on from last week, another DVD has come into the library about adults with Down syndrome working towards their goals. The Up Up and Away project recently launched its DVD and manual showing how to set up a program that enables adults to identity their interests and goals and set up the supports that make attaining those goals possible. The DVD is inspiring to watch. It shows the change that occurs for the young adults throughout the program. And the young people, their family and support teams all give their views.

Also new to the library is another book which may help some people with Down syndrome follow their interests or reach some goals. It is the Next Chapter Book Club (Woodbine House, 2009). We have blogged before about this concept, but now everything you need to know to set up your own book group is contained in this book. It also explains the benefits
and talks about the groups already in existence. We still hope to get funding to set up a trial group, but now you don't need to wait for that, just borrow this book and get started.
To borrow this or the Up Up and Away program DVD and manual, just email us.

Wednesday, 28 October 2009

UK research widely reported: increased diagnoses, steady birth rate

This paper published online this week by the British Medical Journal, on the observed increase in prenatal diagnosis and a steady rate of live births while termination rates remain very high in the UK, has produced widespread reporting and reaction in the British and international press, including various family responses:

Trends in Down’s syndrome live births and antenatal diagnoses in England and Wales from 1989 to 2008: analysis of data from the National Down Syndrome Cytogenetic Register

Joan K Morris, professor of medical statistics, Eva Alberman, emeritus professor,
Wolfson Institute of Preventive Medicine, Barts and the London School of Medicine and Dentistry, Queen Mary University of London, London

The media is well summarised, linked and collated in Patricia Bauer's commentary, Disability News (go to entries dated 28th October 2009).

ABC TV's Q and A on National Disability Insurance Scheme

On Thursday 29 October at 9.30 pm, the ABC TV 'Q&A' program will feature Bill Shorten and Tony Abbott.

Written and video questions are now being taken. Please take a moment to show your support by posting a question about the National Disability Insurance Scheme on the Q&A website.

The program will be available as a Vodcast following the broadcast.

Visit the National Disability Insurance Scheme website here.

Tuesday, 27 October 2009

Photo Project

An invitation to men and women with Down syndrome:

Would you like to have a photograph taken with your boyfriend or girlfriend, partner or family?

At your home, in a local park or at a wedding or commitment ceremony?

Liz Dore, from Relationships and Private Stuff, is hoping to collect photos of a diverse range of couple, including those with intellectual disability. They would be used to create a set of A4 and A5 laminated cards to be used in relationships counselling and educational workshops. You would receive a photo enlargement and digital frames.

If you and your partner are interested, please contact Liz Dore, Relationships Counsellor and Educator: 0416 122 634 or email

Relationships and Private Stuff: 2 workshops

Friendship & Dating Skills Workshops

For people with intellectual disability, aged 25 – 50 years

3pm – 6pm 21st and 28th November

Woodstock Community Centre, 22 Church St, Burwood

Each group participates in two 3 hour sessions held over two consecutive Saturdays

Activities and DVD’s will be used for structured education sessions in a group. Informal activities to reinforce learning will include going out to a local cafĂ© or pub.

The cost is $120 and includes the two 3 hour sessions.

BYO money for outing. (Discount $100 for pensioners & low income earners).

For enquiries contact Liz Dore 0416 122 634 or

To find out more and for directions

A practical approach to teenage private stuff - for parents

This workshop gives parents strategies for teenagers who have an intellectual disability or ASD and difficulties relating to others. It will include practical ideas to support them to have healthy relationships. Resources and discussion will focus on:

Puberty and self esteem
Relationship and communication skills
Appropriate and positive ways to sexual expression
Sex, consent and safe sex
Protective behaviours

10 AM – 1 PM Saturday 5th December 2009

Australian Technical College, Bridge St, Coniston (Wollongong)

Workshop cost $60 for one or $100 for couple.

To register send cheque and form to Liz Dore PO Box 1060 Burwood North 2134 before 30/11/09.

For enquiries ring 0416 122 634 or email

Monday, 26 October 2009

Interview with Lewis

The BBC site Ouch! currently features an interview with Lewis, one of the housemates from the UK online reality series, The Specials.

Saturday, 24 October 2009

US Parenting magazine celebrates Down Syndrome Awareness Month

To mark Down Syndrome Awareness Month (all of October in the US), US Parenting magazine has posted a gallery of photographs of children with Down syndrome, here.

Friday, 23 October 2009

Royal Society grant for work on Down syndrome

News release from the University of Bristol (UK), 22 October 2009:

Professor Chris Jarrold from the Department of Experimental Psychology has been awarded a £12,000 grant from the Royal Society for his research into children with Down syndrome.

The main aim of the project is to analyse the extent to which individuals with Down syndrome are able to understand what they read. Individuals with Down syndrome often show relatively strong reading skills but their comprehension of what they read lags behind their ability to read words.

The research aims to evaluate whether reading comprehension in Down syndrome is simply delayed, or whether it is dissociated from reading skills by seeing whether individuals make use of sentence contexts when reading homographs (words with different meanings but the same spellings).

This will shed important light on the question of whether people with Down syndrome are just ‘good readers’ of words or are also able to ‘read for meaning’, the ultimate aim of literacy acquisition.

The project will run until May 2011.

Thursday, 22 October 2009

Library Thursdays: Futuro Presente DVD

If you have enjoyed watching The Specials, then you may be interested in a documentary from the Italian Down syndrome association (Associazione Italiana Persone Down), Futuro Presente (Future and Present).
This film also looks at the lives of young adults with Down syndrome, but this focuses on a training course a group are doing to learn about living independently and what they need to do to succeed. The film shows some of the activities the class does but the best parts are when other people with Down syndrome who are already living independently, advise the "trainees" about what is important and the benefits of independent living. Another nice part has two sisters interviewing each other about their views of things.
The film is in Italian with English subtitles which are understandable if not always perfect English. The style is much different to The Specials. It is not as polished or tightly edited nor is it narrated by the characters, but it is an interesting view into the lives of young adults with Down syndrome in Italy.

Also available for borrowing this week is the new Gifts 2 book. Having stories from all kinds of people who care for and about a person with Down syndrome as opposed to just mothers (as in the original Gifts) makes it a more interesting book in my opinion.

Email us if you'd like to borrow Futuro Presente or Gifts 2 or anything else...

Comedy is King in pictures

Craig Peihopa (Timeline Photography) donated his time and expertise as the DS NSW photographer for Comedy is King on 23rd September - here is a sample ....

All ages enjoyed meeting the celebrities, and some agreed to join in the performance!

And here is a much better shot of Greg Anderson, Australia's "Electric Cowboy", and Stardust - his performance stunned and delighted.

Wednesday, 21 October 2009

The Auslan Dictionary

Bilby Publishing has released a new Auslan Dictionary for teachers, parents and professionals,

..... the first ever Auslan dictionary to include not only the sign image but also:

Descriptions of how to perform the sign;
Hints to help you remember and teach the sign to children;

A list of English words associated with the sign;
State usage information;

Context usage information.

For example, 'can' has two listings: one for 'I can...' and the other refers to the 'ring pull can'.

Each listing includes notes to help you understand the context under which it is appropriate to use that sign.

It includes over 1400 signs in alphabetical order and a thorough English word index. Being a 2009 edition, it contains many modern signs never before documented such as extreme sports and internet terms.

Please be aware that this is an dictionary for adults and does include adult words, including those of a sexual nature. These are important for sexual awareness education of children, and thus have been included.

This dictionary has already received glowing recommendations and reviews and is available at a special introductory price of only $50!

For further details and ordering, go to the Bilby website.

Tuesday, 20 October 2009

Research report on speech and cognitive ability in children with Down syndrome

A new report on language development in children with Down syndrome was published online on Oct 13 2009:

Cleland J, Wood S, Hardcastle W, Wishart J, Timmins C. , Relationship between speech, oromotor, language and cognitive abilities in children with Down's syndrome, International Journal of Language & Communication Disorders. (doi: 10.3109/13682820902745453)

Despite a lot of investigation into communication impairment amongst people with Down syndrome that has produced a good deal of information, much remains unknown. This study aims to clarify the contribution of cognitive factors to communication:

...... whether speech is delayed or disordered is a controversial topic. Most studies suggest a delay, but no studies explore the relationship between cognitive or language skills and intelligibility.

The researchers concluded:

Children with Down's syndrome present with speech disorders characterized by atypical, and often unusual, errors alongside many developmental errors. A lack of correlation between speech and cognition or language measures suggests that the speech disorder in Down's syndrome is not simply due to cognitive delay. Better differential diagnosis of speech disorders in Down's syndrome is required, allowing interventions to target the specific disorder in each individual.

The abstract is available online here, and while the full text can be purchased, the publisher's charge is $US86 for 24 hour access. Our librarian is investigating alternative access options.

The research was done at the Speech Science Research Centre, Musselburgh, UK.

The journal is published by the Royal College of Speech & Language Therapists.

Monday, 19 October 2009

A string of successful Buddy Walks ......

Buddy Walk Sydney, as we said was a great success. Thanks to Louise who has sent through her photos - here is a sample ..... Love Junx energised the whole event, and we had a great time meeting up with the Love Junx members and their families.

Buddy Walk Newcastle (yesterday) was huge, and great fun. Thanks to the Brown, Hepplewhite, Moran, Pettet and Taylor families who were the core of the organising team. It was a beautiful setting, the weather held, the entertainment was magnificent. Pictures to come.

Wollongong (also yesterday) was informal and low key, but very enjoyable for the happy local band who met for a picnic and a stroll around their beautiful harbour.

Buddy Walk Canberra (on Saturday) was also a great success - the kids had good fun having their "passports" checked along the way, Lake Burley Griffin sparkled, there were fairies, Muppets, and all sorts of characters.

We hear that the inaugural Buddy Walk in Melbourne went off with a bang too - more than 600 people registered.

By the time the Wagga Wagga Twilight Walk ends next Saturday evening (24th), more than 1000 people will have participated in NSW this year.

Thanks for being part of the fun.

These videos have nothing to do with Down syndrome or any other disability - The Fun Theory is actually a European design competition, but they are great examples of adapting the environment to support desired behaviours by the people who live in them.

"This site is dedicated to the thought that something as simple as fun is the easiest way to change people’s behaviour for the better. Be it for yourself, for the environment, or something entirely different, just so long as it’s change for the better."

Look, laugh and think about the principles that we could apply in everyday life - we don't always need such high tech responses (although these ones really are fun) ...... but we do sometimes need reminding of the principle.

Saturday, 17 October 2009

Buddy Walk - Newcastle: Sunday 18th October, 2009

Please meet tomorrow 9:30am at Newcastle Foreshore Park,
Carriageway Shed, for Buddy Walk Newcastle

Prestart entertainment & welcome: 9.45am

Hunter School of Performing Arts - Marching Band

Walk starts: 10:00am (registration essential)

Walk Launch - Lord Mayor of Newcastle

BYO Picnic/Sausage Sizzle & entertainment afterwards

For more information contact:

Jennine - 0406 057 402 or Anna - 0414 909 040

St George Carers & Consumers Forum

Tuesday, 10th November, 2009
10.00am — 12.00pm

Followed by free luncheon

Guest Speaker:
Irene Strong, St George Home Care

The forum is an informal regular gathering that will provide an opportunity for consumers of community services and their carers to meet and discuss issues relating to disability, ageing, and living in the community

For more information, please contact Raine Kornfeld
Phone: 9580 0688
Fax: 9580 4487

R.S.V.P. by 3/11/09

Pole Depot Community Centre Inc.
23 St Georges Road (PO Box 152), Penshurst 2222

Phone: 9580 0688 Fax: 9580 4487


Friday, 16 October 2009

Camp Willing and Able: NSW Sport and Recreation

From the NSW Sport and Recreation website:

Camp Willing and Able is a residential program suitable for people of all ages with a physical and/or intellectual disability.

The camps will provide children, teenagers and adults with the opportunity to participate in a variety of games and recreation activities. The emphasis during activities is on making friends and having fun.

Activities may include:

  • canoeing
  • sailing
  • archery
  • bike activities
  • basketball
  • tennis
  • soccer
  • indoor recreation
  • netball
  • swimming
  • craft
  • beach games
  • dance

Volunteer carers from previous camps, new community carers and students from Southern Cross University will be rostered on throughout the camp to care and provide support for all children.

It is intended to have one carer for every two participants attending the camp. Camp organisers will take into consideration the different needs of each participant and there may be times where it is necessary to allocate one to one supervision.

For participants who normally have a personal carer, a carer must attend the camp with the participant.

Age group: 9 to 17 years

Date/s: Saturday 21 and Sunday 22 November, 2009

Time: 9.30am Saturday to 3pm Sunday
Cost: $175
Lake Ainsworth Sport and Recreation Centre, Pacific Parade, Lennox Head

Applications close one week prior to camp unless all vacancies have been filled.

How to enrol

Thursday, 15 October 2009

Down Syndrome Awareness Week event: Coffs Harbour

Family and Friends

are invited to attend a BYO picnic to celebrate

Down Syndrome Awareness Week

at Jetty Foreshores, Coffs Harbour

Sunday 18th October, 2009

Look for the yellow balloons!

Enquiries: email

Library Thursdays: Seeing is believing:Video self-modeling

New to the library is a book created with people with autism in mind, but it can also be useful for people with Down syndrome learning new skills. Seeing is Believing: Video self-modelling for people with autism and other developmental disabilities by Tom Buggey (Woodbine House, 2009) describes how to film and edit videos using the latest techniques in order to teach and reinforce skills and behaviours. He gives step by step help for people who have little experience and makes it possible to create the videos you want. He discusses why these videos help and the research done on this method. He discusses what type of skills can be targeted (language skills, academic skillls, behaviour) and how to shoot the film to achieve this. He gives case studies that show examples of what can be done. These include: getting ready for school, responding to questions, eating lunch, tantrums, interview techniques, interacting with friends, shopping, and expressive language. The expressive language example involved 2 boys with Down syndrome. One learned to extend his language from one word utterances to 4-word sentences. The other learned to respond to questions and to initiate speech. Editing together things the boys had said allowed them to see themselves using sentences and answering questions.
Videos self-modeling(VSM) is great for visual learners. It also seems that video self-modelling would appeal to those with Down syndrome that have the "I want to be a star" gene (that is on the 21st chromosome isn't it?). Seeing themselves doing things well can be a confidence booster for those who don't want to fail. These videos serve the same purpose as social stories and can show a whole sequence rather than just one frame. However, it does require more equipment and a desire to edit to get the result you want.
If all this sounds interesting, email us to borrow the book from the library.

Wednesday, 14 October 2009

In Control Australia forum: How can Self Directed Support work in practice?

The forum will showcase the transformation of the disability service system in Victoria where all support packages have been streamlined into one program with one set of guidelines, one planning process and one funds approval process.

People with disability and their families get more choice and flexibility including the ability to direct their own support with a financial intermediary taking care of legal and financial obligations.

Tuesday 24th November 2009
10am sharp – 3.30pm (Registration from 9.30am)

Parliamentary Theatrette, NSW Parliament House,

Macquarie St, Sydney

RSVP: or (02) 9869 0866 by 17 November

Cost: $30 for staff of services or organisational representatives; $10 for people with disability and families, GST included

Lunch will be provided.


Peter Shergold Chair, Centre for Social Impact, UNSW on the ethical and economic imperative for self directed support

Lisa Minchin Service Reorientation Unit, Community and Individual Support Branch of Victorian Dept of Human Services on new opportunities

Maureen McLeish Direct payment recipient on behalf of her daughter

Jim Burns CEO Melba Support Service on the impact of the transformation on a large non government service

Lara Friedman Person with disability using self managed package

Judy Harwood Director Reform & Development DADHC on initiatives in packaged support in NSW

Triple P: Positive Parenting Program - Bondi, November

A FREE group course for parents with children aged 3-8 years old with additional needs. Practical solutions to common parenting problems

Wednesday 4, 11,18 and 25 November (four-week program); 6–8pm

Waverley Council’s Family Day Care Centre
25 Ebley St, Bondi Junction 2022

RSVP by Monday 30 October

CONTACT: Paul Berchtold
PHONE: 9310 6300

FACILITATORS Sunita Misra (Specialist psychologist- DADHC) and Paul Berchtold (Social Worker-DADHC), whose areas of expertise include working with children with additional needs and challenging behaviour.

Please note: There will be another day time group in March 2010.

The Triple P positive parenting program can help you find ways to deal with difficult behaviours and support your child.

Triple P is an evidence-based program (backed up by over 25 years proven clinical
research) so it works for most families.

Triple P can help you:

- create a stable, supportive, harmonious family environment

- teach your children skills to get along with others

- deal positively, consistently and decisively with problem behaviour
encourage behaviour you like

- develop realistic expectations of your children and yourself
take care of yourself as a parent.

Tuesday, 13 October 2009

We loved Buddy Walk!

Jackson brought his large extended family to Buddy Walk - Australia in Sydney, in honour of the theme It's a G.A.S. - acknowledging the important of loving support from grandparents and siblings, for people with Down syndrome and their parents. They sent this note on Sunday evening immediately after the Walk:

Today we attended the Buddy Walk and we had a fantastic time! We especially enjoyed the Love Junx performance and found the members of the group and their families so lovely.

We were so glad the weather was good and we all had a great day. We loved the blue t-shirts and hats and really enjoyed the sausage sizzle!

Jack has Down Syndrome and he is pictured in all of the photos along with members of his family (including his Nana & Pop)!

Thank you again to everyone who organised this wonderful day – it was a great success! I look forward to next year – and so do my family!

Monday, 12 October 2009

Buddy Walk - Australia, Sydney ....

Yesterday's 2009 Buddy Walk - Australia in Sydney was a great day .... the weather held, the sun eventually came out (a bit), there was food, fun, lots of families, and wonderful, wonderful entertainment from Japanese hip-hop dance group Love Junx. But guess who forgot to take the camera? Please share your photos by emailing them to Thank you very much!

In the meantime, our grateful thanks to everyone who participated, the fabulous army of volunteers, Shannon and Tara who organised everything at the picnic site, Coates Hire for providing and erecting the marquees and fencing, Rotary Club of St George for providing the BBQ, Cafe2U who came at very short notice when the booked coffee van broke down, and to all of our generous sponsors and donors.

We'll have photos soon!

Saturday, 10 October 2009

Karen Gaffney swims Boston Harbour to raise awareness

Down Syndrome Week begins this weekend: 11 - 18 October, across Australia. In the US and Canada, October is Down Syndrome Awareness MONTH.

Long distance swimmer and advocate for herself and other people with Down syndrome, Karen Gaffney has swum five miles across Boston Harbour to raise awareness about stereotyping people with Down syndrome. Brian Wood reports in the Oregon KATU News, including a video clip (Karen lives in Portland, Oregon).

The DVD Crossing Tahoe documents Karen's even longer swim across Lake Tahoe - DS NSW members can borrow it from our library, or you can buy it from Blueberry Shoes Productions.

Friday, 9 October 2009

Scrapheap Adventure: Easter 2010

Do these images appeal to you and your sense of adventure?

Would you like to combine a love of motorbikes and the outback?

Then the 2010 Scrapheap Adventure is for you!

Raising money for Down Syndrome NSW

Ride to: Wanaaring - 200k’s west of Bourke, NSW
When: Easter Saturday - April 3, 2010


  • Have to buy a Bike for less than $1000
  • Can be any road registered motorcycle
  • You are allowed to spend additional sums on the bike to make it roadworthy, all machines participating must be registered
It costs $100.00 to enter paid directly to DS NSW.You can raise additional funds through sponsorship of your ride - pay cents per km

Award/trophy voted by the attendees for:

  • Best bike
  • Longest distance
  • Hard Luck award
It will be good to see what weird bikes will turn up! From 1970’s 4’s to Old 2 stroke trailies - even postie bikes are allowed.
  • Detailed flyer and online registration will be available shortly.

EarlyEd 30th Anniversary celebration postponed

EarlyEd's 30th Anniversary party, originally scheduled for November, has been postponed until February next year. The exact date will be available within the next few weeks. Those interested in updates can either email or phone 9923 2727

Thursday, 8 October 2009

Sydney kids in New York

Sydney kids, Luke and his sister Caitlin featured in the 15th annual Down Syndrome Awareness video in Times Square, New York on 26th September, after their mum sent off this very Sydney photo and it was accepted by the National Down Syndrome Society for inclusion.

It was taken at the Buddy Walk - Australia event in Sydney in 2007.

This year's Sydney Buddy Walk - Australia kicks off at 10.00 am sharp on Sunday (11th October). Click here for details.

Library Thursdays: Libby Kumin online mini workshop plus Mental Wellness authors

Woodbine House, publishers of the Topics in Down Syndrome series, has an online mini-workshop for parents of children 6-14 by Libby Kumin, drawn from her book in that series, Helping Children with Down syndrome Communicate Better.
The workshop is titled, Home is at the Heart of Communication and it gives many tips for improving your child's communication skills at home or with the family.
If you found it too overwhelming to go through the whole book by Kumin, try a couple things in this article. And when you are ready for more, borrow the book from the library.

Also from Woodbine House is a question and answer article with the
authors of one of our most popular books, Mental Wellness in Adults with Down syndrome. Dennis McGuire and Brian Chicoine answer questions about behaviours of concern
to parents and workmates of teenagers through adults. They cover grooves, comparison to ADHD, odd physical behaviour amongst other things. Despite the title, the book can also help understand behaviour in adolescents and is highly recommended for all parents.
If you'd like to borrow either book, just email or phone the library.

Wednesday, 7 October 2009

Conference on siblings - Sydney, November

Centre for Developmental Disability Studies

Brothers and Sisters: Their role in the life of a person with a disability

Keynote Speakers:
Dr John Kramer - co-founder and leader of the Sibling Leadership Network (SLN) in the United States, a growing movement of brothers and sisters of people with disabilities, siblings with disabilities, and committed professionals interested in policy, services, and research related to siblings.

Assoc. Prof. Monica Cuskelly - Graduate School of Education (University of Queensland), her working experience had been primarily in the field of educational psychology with some forays into clinical areas. Her major research interests are family functioning in families with a child with a disability, the development of persons with Down syndrome, self-regulation and mastery and academic motivations.

9.30 am – 4.30 pm, Tuesday 17th November, 2009

This workshop will be of interest to: Families, Siblings, Persons with disability, Support Staff, and Policy Planners among others.

Charles Blunt Conference Room
Royal Rehabilitation Centre Sydney
59 Charles Street, Ryde, 2112

Further Information: Margaret on (02) 8878 0500; E-mail:
[Closing date for registration: Thursday 12th November 2009]

Tuesday, 6 October 2009

Down Syndrome and dementia: information now online

Down Syndrome Victoria has made two important documents on Down syndrome and dementia available online through its revised website:

The guidelines on Down Syndrome and Alzheimer's Disease published earlier this year by Alzheimer's Australia,and the Down Syndrome Australia Network are now available online here (5.71 Mb file)

Print copies of the booklet are available from Down syndrome organisations around Australia, including Down Syndrome NSW

Notes from Diana Kerr's presentations on Down syndrome and dementia, delivered during her lecture tour of Australia in April 2009 are now available online here. The article was published in Voice, the DSAV members' journal, Winter 2009.
Copies of her presentations can be downloaded from the Alzheimer's Australia website (enter "Kerr" into the search box), and a DVD is available for purchase from Alzheimer's Australia.

Monday, 5 October 2009

Their merry dance still opens doors and warms hearts

Sue Williams
Sydney Morning Herald, October 5, 2009
When the Merry Maker dancers Lucinda Bryant and Scott Martin take the stage together, something magical always happens.

Eighteen years ago they won the City of Sydney Eisteddfod in the first year a dancer with disabilities was permitted to compete, and their photograph appeared on the front page of the Herald.
....the prize-winning pas de deux they performed has become a much-loved staple of Merry Makers' shows. Tomorrow they will perform it at Government House for the Governor, Marie Bashir, who will launch Love is in the Air, a book about the Merry Makers.
..... Martin, who has Down syndrome, is now 42 and never tires of dancing that duet. "I love it," he says. "But so many people always cry when they watch."

Click here to read the full story online, and the accompanying photo of Lucinda Bryant and Scott Martin from page three of this morning's Herald. The print report includes the original 1991 photo.
The Merry Makers website: - links to the new book "Love is in the Air" and the documentary "The Music in Me" are on the home page.

Click here for a listing of dance groups and classes on the Down Syndrome NSW website.

Sunday, 4 October 2009

Support for National Disability Insurance Scheme

End the poverty of disability
Stephanie Peatling, Political Correspondent, Sun Herald, October 4, 2009

A national insurance scheme for people with disabilities is on the radar for the Rudd Government after persistent warnings the existing system is in crisis.

An expert panel established by the Government will recommend a feasibility study be commissioned to determine the cost.

''It's both economically rational and socially responsible,'' said Bruce Bonyhady, a member of the Disability Investment Group. He likened the introduction of such a scheme to the push for Medicare and superannuation. ''Despite our intention to minimise risk, stuff happens,'' Mr Bonyhady said.

.....The idea is being pushed by the parliamentary secretary for disabilities, Bill Shorten, who believes the existing system of care is inadequate and poorly targeted.

''There is a poverty of disability,'' Mr Shorten said. ''Disability has been seen as a welfare issue when it should be an economic one.''

Read the full report online here, and previous posts about he National Disability Insurance Scheme here.

National Disability Insurance Scheme website: The NDIS news service reports that Dr Rhonda Galbally will be addressing the National Press Club this Wednesday (7th October) on the Shut Out report, and on the need for a National Disability Insurance Scheme.

Raoef Mamedov photographic works

Russian photographer Raoef Mamedov's work featuring people with Down syndrome in scenes based on biblical texts can be viewed on the Lilya Zakirova Gallery website:

In a post-modern way this project combines cinematic theatre, photography, art history, theology and computer technology in twelve photographs of 80 by 60 cm (7 signed copies), depicting seven biblical scenes from the New Testament which are "enacted" by people with Down's syndrome.

The project includes scenes depicting the Annunciation, the Nativity, the Epiphany, the Vigil in the Garden of Gethsemane, the betrayal by Judas, an Ecce Homo, and most famously, the Last Supper, all reflective of renaissance artworks, but highly original in Mamedov's realisation. The hands of the people with Down syndrome are particularly expressive.

Descriptions of the work on the website are available in Dutch, German and English.

Saturday, 3 October 2009

New guidelines for physicians: How to give a diagnosis of Down syndrome

Every mother and father who has a child with Down syndrome remembers vividly when they first learned of the diagnosis.

There are better ways than others to inform an expectant parent of a diagnosis of Down syndrome but to date, there have been no standard guidelines for physicians. Brian Skotko, Thrive

Some doctors have always delivered the diagnosis well, but many families have reported unnecessarily negative experiences. Previous guidelines have been written, but their distribution and uptake was often patchy at best.

Two papers are published online by medical journals this week, to guide physicians in the sensitive task of telling parents that their baby has Down syndrome. Paediatrician, researcher and co-author (with Dr George Capone and Dr Priya Kishnani, for the Down Syndrome Diagnosis Study Group) has published links to each of the papers, and background information into how they came about, on Thrive, the Children's Hospital of Boston's health and science blog.

Patricia Bauer says, " Advocates and physicians have been calling for guidance on delivering diagnoses ever since the American College of Obstetricians and Gynecologists (ACOG) recommended in 2007 that obstetricians offer prenatal screening and testing for Down syndrome to all pregnant women, regardless of age.

The 2007 ACOG recommendations were not accompanied by any assistance to doctors in delivering diagnoses, and many doctors have reported in survey research that they haven’t gotten professional training about individuals with intellectual disabilities, or about prenatal diagnosis or counseling expectant parents."

Professional bodies around the world have endorsed or are considering similar recommendation about prenatal testing, so the new guidelines are authoritative, welcome, and will be easy to disseminate.

Friday, 2 October 2009

Attitude TV

Attitude is an upbeat television magazine series from New Zealand, designed to reflect the lifestyle, issues and interests of people either living with a disability or caring for a person with a disability.

Episode 29 (2009) features an interview with Kelly Fitzgerald, one of only two people in New Zealand with Down syndrome that have their full drivers license.

Thursday, 1 October 2009

Library Thursdays: Kathy Conour from Diana & Kathy: Heart & Soul, dies

Last year, the library purchased an interesting documentary, Diana & Kathy: Heart & Soul, about two women who solved their living difficulties by sharing a house. Kathy Conour, who had cerebral palsy had physical limitations and was cared for by Diana Braun, who has Down syndrome and found other things challenging so she was in turn supported by Kathy. They were pleased with their ability to live independently and went around the US to help others advocate for themselves. This week Kathy died just before the documentary was due to be broadcast on US TV (PBS) nationwide. Kathy was an amazing woman and Diana is determined to continue their advocacy. If you haven't viewed the DVD yet, please borrow it from the library.

Livewire Siblings

Livewire Siblings is a new free, safe and supportive online community for young people (aged over 10 and under 21) who have a brother or sister living with a disability, serious illness or chronic health condition. It is a place for them to meet other siblings, share experiences with people who understand what they are going through, and gain the skills and knowledge to help them feel more in control of their situation.

Visit The Scene for more information, or go directly to Livewire Siblings

Livewire is currently investigating ways to make Livewire more accessible for people with intellectual disabilities, and is including organisations such as Down Syndrome NSW in its discussions. We will get back to you with more information as developments occur.

The Scene

The Scene is one of a suite of blogs maintained under the umbrella of The Spastic Centre. Some of the blogs are of more specific interest to people with cerebral palsy, while The Scene has information about all sorts of events and happenings of more general interest to people with all sorts of disabilities.

Well worth a place on your Blogroll and we've just added it to our (in the right hand column).