Address details

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

Thursday, 30 December 2010

Library Thursdays: Most Popular of 2010

Popular resources for 2010 had a few differences but the top titles of course remain the new parents resources: Gifts: Mothers Reflect on how Children with Down Syndrome Enrich Their Lives, edited by Kathryn L. Soper and Down Syndrome: The First 18 months DVD by Will Schermerhorn.
The next most popular resources were also
for new parents: Babies with Down syndrome by Susan Skallerup and Development in Practice: Activities for babies with Down syndrome DVD by Down Syndrome Education International.

Next comes Teaching Children with Down Syndrome about their Bodies, Boundaries and Sexuality by Terri Couwenhoven,

Mental Wellness in Adults with Down Syndrome
by Dennis McGuire & Brian Chicoine,

Gross Motor Skills in Children with Down Syndrome by Patricia C Winders.

Roadmap to Holland by Jennifer Graf Groneberg,

Development in Practice: Speech and Language Activities for preschoolers with Down syndrome (a DVD produced by Down Syndrome Education International,

Three new titles round out the top ten:

the Australian Dance like Nobody's watching DVD directed by Liz Collins, narrated by Paul Matley about his life and what it means to have Down syndrome),

the revised edition of The New Social Story Book by Carol Gray,

and Gifts 2: How People with Down Syndrome Enrich the World, Kathryn L. Soper, ed.

With a few titles arriving at the end of the year that are already in high d
emand (Down Syndrome Education Conference DVDs and The guide to good health for teens and adults with Down syndrome by Dennis McGuire and Brian Chiccoine), there will be different 'most wanted' next year.

Thursday, 23 December 2010

Adult Down Syndrome Clinic: information posts

The Adult Down Syndrome Clinic in suburban Chicago is known world-wide for its experience and expertise in providing health care to people with Down syndrome since 1992.  Its clinicians, Drs Brian Chicoine and Dennis McGuire are the authors of the well known and highly regarded books, Mental Wellness in Adults with Down Syndrome (2006) and The Guide to Good Health (2010). Both of the books are available to be borrowed by Down Syndrome NSW members from our library (reopening from Monday 10th January).

Via a community Facebook page, the clinic also provides information on specific topics and health concerns, in small bites.  The latest posting is on 'calcium and osteoporosis' includes some suggestions for dietary sources of calcium, and is available here.

You do not need to have a Facebook account to access these pages.  Click on "Adult Down Syndrome Clinic notes" immediately under the profile image to link to other information postings.

Managing changes to routines during and after the holidays

Joan Medlen's recent blog, The Ultimate Routine-Killer: Winter Break, about managing the lack of routine that happens during the northern hemisphere winter school break will ring bells for many families in Australia where the festive season comes at the beginning of an often much longer summer break, followed by some major transitions. 
Joan provides practial strategies for managing one-off events, and an example of a visual  way of helping someone with an intellectual disability and communication impairment to prepare for breaks in routine and the big change to a new school environment, or the transition to post-school life.  Easily adaptable to other situations - as she says, an additional task now that could save time and frustration in the weeks to come. Maybe enlist the help of siblings who might be at a loose end in the holidays?

Wednesday, 22 December 2010

Growing older with Down syndrome: an information event for parents and family carers of people with Down syndrome aged 35 and over

Advance notice of  - registration will open from 11th January 2011

How might growing older impact on our son or daughter?
What do we need to know?
What supports might we need, and where will we find them?
Just how common is dementia? What should we look for?

9.30 am - 2.00 pm
Saturday 26th February 2011

Mary Bills, Alzheimer’s Australia (NSW) educator
Jill O’Connor, Down Syndrome NSW

Your questions are welcome, and time for discussion will be available.

Anderledy Lodge
Hospitality and Conference Centre
(Located within the grounds of Mary MacKillop Place)
80 Williams Street, North Sydney

There is no charge for this event, but booking is essential for catering. Morning tea and a buffet lunch will be provided.
Similar events will be offered in regional NSW during early 2011.
Information on Growing Older with Down Syndrome is also available from the Down Syndrome NSW website, here.
An Australian Government Initiative, presented by Down Syndrome NSW.

Tuesday, 21 December 2010

In late August we posted  here about a very important research study from the highly regarded Down Syndrome Research Group at the University of Arizona.  Now Dan Wetmore, at the equally highly regarded Stanford University School of Medicine has provided a very useful review of the Arizona study, via his blog, Innovations in Neurodevelopmental Disorders:

Article review: "Development and validation of the Arizona Cognitive Test Battery for Down syndrome" by Edgin and colleagues

The review looks at why the new test battery is needed, what it assesses, gives some examples of the tests, and discusses future developments and what they will mean to our knowledge about people with Down syndrome

Innovations in Neurodevelopmental Disorders has been added to our 'blogroll' recommendations for regular reading (scroll down the right hand column of this page), as Dan Wetmore plans to blog weekly during 2011 about research relevant to those of us with an interest in Down syndrome and other neurodevelopmental disorders. If you visit the blog's home page you will see where his personal connection to people with Down syndrome began.

Monday, 20 December 2010

A letter to .... my mother, the carer

The UK newspaper, The Guardian is running a series of articles under the title "A letter to .... " - this weekend's is written by Emma Sterland, the sister of a 54 year old man with Down syndrome, to their mother.

The terminology and responses reported from his early days is way off the mark now, but was gnerally considered entirely acceptable then - it's not really so long ago. The actions of this mother, who "hhen a friend asked him to be the page boy at her wedding, ..... wrote an article in this newspaper about it", were pioneering.

Friday, 17 December 2010

Family Advocacy to host Paula Kluth workshop, March 2011

Dr Paula Kluth
3 - 4 March 2011

Joyful learning:  Engaging all students in the inclusive classroom
West Ryde (Sydney)

Family Advocacy is excited to invite families, education staff and students, teachers, and other interested professionals to a two-day workshop facilitated by Paula Kluth. This practical and interactive workshop will provide participants with a range of tried and trusted strategies for inclusive classrooms. It will also include information about the latest research regarding inclusion of children with disability in education.

Dr. Paula Kluth is an internationally respected and published education consultant with many years of teaching experience at all levels. More information and resources on inclusive education are available at

Download a flyer and registration form with all event details from the Family Advocacy website.

Thursday, 16 December 2010

Library Thursday: online resources from Queensland, and a new book from Woodbine House

The Down Syndrome Association of Queensland website has some very useful resources, including this booklet of Guidelines for Childcare/Prep workers (creating an environment within an early childhood setting that welcomes and supports a child with Down syndrome).

To access other online articles and resources, click on the Information about Down syndrome menu and follow the links from the  Related Links text box. Some resources can be ordered in print, some are available online only.

Woodbine House has released its new book and CD-ROM package, The Kitchen Classroom.   It is packed with visual supports. We expect to have copies in the Down Syndrome NSW library by early February 2011.

You can also follow Woodbine House activities, such as planned and new releases, on Facebook

For sale: heirloom rocking horse (proceeds to Down Syndrome NSW)

The opportunity of a lifetime to purchase your own family heirloom.
For sale:  one only, brand new, hand carved rocking horse.
Her name is Magic, and she has a time capsule in her tummy, with details of the woodcarver who made her and then donated her so that all the money received for her sale will go to Down Syndrome NSW.
Sale price:  $3,000

Please contact Bronwyn on 0412 666 034 or 02 6553 6014

Wednesday, 15 December 2010

Wordless Wednesday

New web pages on growing older with Down syndrome

The Growing Older with Down Syndrome section on the Down Syndorme NSW website has been updated this week, and some new pages have been added added:

News and events

Families' stories about growing older with Down syndrome 
Growing Older with Down Syndrome News Sheet issue 2, Summer 2010 - 2011

New pages currently in development are about:
  • research into ageing with Down syndrome and into dementia in people with Down syndrome
  • supporting people with Down syndrome to understand what is happening to friends who are ageing and develop dementia

Classroom language and reading trial update: free online event for early risers

Down Syndrome Education International has scheduled a free online research briefing that eastern Australian early risers might be interested to participate in tomorrow morning:

Online research briefings: language and reading trial update
Thursday, 16 December 2010 6:30 am (Australian  Eastern Summer Time)

Duration: 1 hour

Description: Researchers at Down Syndrome Education International and the University of York have recently reported positive initial results from a landmark study of a targeted language and reading programme designed for children with Down syndrome.

Join us to online to learn more about the study and what we hope it will deliver in 2011/12.  Register here.

Friday, 10 December 2010

Commentary on Stronger Together 2: NCOSS

NSW Council on Social Services (NCOSS) has issued a summary and comment on the recent announcement of funding for the second five years of the NSW Government's Stronger Together initiative for disability services:

The entire Stronger Together 2011-2016 can be viewed here

Stronger Together 2011-2016 delivers $ 2.02 billion additional investment in disability supports over 5 years 2011-2016, building on the previous 5 years investment of $1.5 billion in today’s dollars. This totals over $5.5 billion for the Stronger Together period 2006-2016 in new disability spending. This does not include inflation or Commonwealth contributions from the National Disability Agreement, which will be additional. The 2011-2016 allocations will create an additional 47,200 support places for people with disability in NSW.
Some new highlights of this Stronger Together 2011-2016 expenditure include:
  • Emphasis on person-centred approaches becoming available from 2011/2013 with designated funding. From 1 July 2014, all people using ADHC disability services will have the opportunity to convert their services to individualised funding.
  • Closure of large residential centres or disability institutions, with designated funding for most centres. The target date for closures to be finalised is 2017/18.
  •  Annual reporting to Parliament on actual vs. planned expenditure as well as progress on the number of places implemented.

Stronger Together 2011-2016 commitments include: 
  • $63.1m for 4,700 new therapy and behaviour support places
  • $95m for 4,500 new flexible respite places
  • $248.4m for 2,800 new Community Participation places
  • $107.4m for 2,00 new day program places
  • $53m for 380 new intensive family support packages, including 180 packages targeting Aboriginal people and families
  • $21.1m for 1,000 flexible funding packages for children with autism
  • $77.6m for 3,700 early intervention packages for children and young people
  • $62.4m for 300 new Attendant Care places
  • $724.8m for 1,750 supported accommodation places, including the 300 supported living places and capital expenditure
  • $10m for payroll tax exemptions to employers of people with disability.
  • $255.4m towards the closure of government operated and NGO disability institutions
  • $25m training and development initiatives to promote workforce and industry capacity
  • $5m for Social Impact Bonds to improve early intervention outcomes
  • $57.5m for research, development and data initiatives 
NCOSS notes that Stronger Together 2006-2016 will have delivered more new disability support places in the ten years to 2016 than the entire service capacity up to 2005-06 in the areas of:
  • Community support
  • Respite
  • Family support
  • Post School Programs
  • Attendant Care 
This represents an overall increase of 146% over the entire capacity 2005-06 in disability services.
NCOSS welcomes the commitment of the NSW Government to
  • ensure that Stronger Together complies with the UN Convention on the Rights of Persons with Disabilities
  • implement the National Disability Strategy towards whole-of-government policies for people with disability
  • work with the Commonwealth and State and Territory Governments on the National Disability Insurance Scheme as a priority
  • work with the Commonwealth on the National Health and Hospital Reform Agreement to secure ongoing support for young people in residential aged care.  
The first phase of Stronger Together had a comprehensive table indicating how much spending would be allocated to which program, benefitting how many people in each year. NCOSS is pleased to see that the second phase 2011-2016 has also included a table with the same details of targets in spending and disability places.


Thursday, 9 December 2010

National Disability and Carer Congress: May 2011, Melbourne

From the National Disability Insurance Scheme Campaign director, John Della Bosca:

The National Disability and Carer Alliance will next year convene The National Disability and Carer Congress: Make Every Australian Count to be held in Melbourne on May 2 and 3. Mark the date in your diaries now. Come along to this exciting event and hear from our elected representatives about their vision for people with a disability, their families and carers in this country, hear from international experts about developments in disability policy around the world and most importantly, hear from people with a disability, their families and carers about their hopes for the future.
This congress will be unlike others with many opportunities for participants to quiz presenters and engage in greater discussion and debate than is usually possible within traditional conference programs. A discounted subsidised rate will be offered for individuals with a disability and family members in order to ensure as many people as possible have the opportunity to participate. We are on the cusp of transformational change in this country – come along to the Congress and hear what it will mean for you and how you can be part of it. Registrations will open early next year – save the date and spread the word.

Library Thursday: an online resource on mental health and children with intellectual disability

The School Link website is home to the Children's Hospital Westmead School Link newsletter and a range of information on mental health and children with intellectual disability, a development of the existing School-Link Initiative to focus on students with an intellectual disability, " ... as they are a significantly at-risk population for experiencing mental health problems and disorders."

Three issues of the School Link Newsletter are available, all published during 2010. Highlights of the December 2010 issue include:
  • Feature article on Positive Behaviour for Learning by Mooney et al 2008 
  • The Training Curriculum Project goes to Rome by Lesley Whatson
  • A Day in the life of Cultural Clinical Consultant and case study by Hadia Baassiri
  • The Medicine Cabinet: Ritalin by George Liangas 
  • Appreciating the more important things of life: Professor Trevor Parmenter’s fest-schrift by Associate Professor David Dossetor
  • Upcoming training 
  • Resources/reading list
  • In the news/reviews 
  • Plus much much more!

Wednesday, 8 December 2010

Water Babies

A very nice interview with a young Irish mother .... accompanied by what is possibly the cutest baby picture of the year.  Click here for both the picture and the interview.

Tuesday, 7 December 2010

Down Syndrome NSW quarterly publications, December 2010

Down Syndrome NSW members will receive your quarterly publications mailing in your letterbox over the next few days.  Your package will include Voice, Down Syndrome NSW News and the DS NSW Update.

Voice, December 2010  - feature articles are available online hereVoice is a quarterly journal, published jointly by Down Syndrome NSW and Down Syndrome Victoria

Down Syndrome NSW News, Summer 2010-2011 issue, the NSW supplement to Voice, is available as a .pdf document here.

Speak UP! Issue  is incorporated into the print edition of Down Syndrome NSW News.  It can be downloaded as a stand-alone publication here.

Down Syndrome NSW e-Update December 2010/January 2011 is published online here.  The e-Update is a monthly information bulletin and events listing.

The print edition of the Down Syndrome NSW Update, December 2010/January 2011 (which does not include some of the online content received after printing) can be downloaded as a.pdf document here.

Saturday, 4 December 2010

Responses to Stronger Together 2 funding

The NSW Government's announcement of $2 billion funding for Stronger Together 2, and responses from the disability sector have been widely reported in the media, including by the ABC, The Australian; Sydney Morning Herald, with today's print edition of the SMH adding that the NSW Opposition has pledged that the funding will be secure should the Coalition win government at the State election in March 2011.

Family Advocacy has analysed the news against it's current priorities, a Supported Living Fund for NSW and Self Directed Funding here.

The NSW Council on Social Security will publish its response early next week.

Friday, 3 December 2010

Stronger Together Stage 2: $2 billion additional funding for disability services in NSW announced today

The NSW Government today announced a further $2 billion investment in disability services over the next five years for the second phase of the Stronger Together 2006-2016 initiative - reaching out to the most vulnerable in the community and supporting their carers.
The first five years of the program has already injected $1.3 billion in growth funding to the disability sector.
This is the largest investment in disability services in New South Wales’ history and the most significant investment made by a State Government anywhere in Australia.
The additional funding will increase disability services capacity by an estimated 47,000 places over the next five years.
This funding is in addition to the $2.02 billion it will cost to continue to fund the expansion of disability services already provided under the first five years of the program.
It brings the total new investment by NSW over the ten years of Stronger Together 2006-2016 to a record $5.5 billion.
In addition, the NSW Government will provide a payroll tax exemption for employers of people with disabilities. The exemption will apply to all new employees who are employed after 30 June 2011.
The exemption will be provided in the form of a rebate to employers who fully pay the wages of employees with a disability.
The package follows extensive public consultation with disability service providers, people with a disability, their carers and their families.
Premier Kristina Keneally and Minister for Disability Services, Peter Primrose today joined disability service providers, people with a disability and their carers to announce the expansion of Stronger Together.
“Stronger Together has already delivered an additional 29,000 disability service places, and has helped service providers to be more responsive to the individual needs of people with a disability and their families,” Ms Keneally said.
“The disability sector has made it clear through our consultation sessions carried out earlier this year that Stronger Together has made a positive difference to people’s lives.
“We recognise there is still more to do to make sure we get the plan right for the next five years.
"People with a disability in NSW need more support, as do their families and carers, and this package is about giving disability service providers the flexibility they need to better respond to people’s needs.
“The Stronger Together program demonstrates how government and non-government sectors can work together to provide certainty for people with a disability, their families and carers.”
Minister for Disability Services, Peter Primrose said providing payroll tax exemptions for employers of people with disabilities will help deliver the NSW Government’s State Plan target of an extra 6,000 jobs for people with disabilities by 2016.
“This is great news for people with a disability and follows an announcement by the NSW Government earlier this year exempting employers of people with a disability from normal tendering requirements for Government goods and services,” Mr Primrose said. “The new register enables Government agencies to procure goods and services from companies that hire people with a disability without having to go through a separate tender process.
“National Disability Services (NDS) will keep a procurement register on behalf of eligible companies that fulfil certain requirements.
“The changes are detailed in a Premier’s Memorandum that encourages NSW Government agencies to access more goods and services from the register.”

Today is International Day of People with Disability

Information on events:
International Day for People with Disability (National)

There is much happening today and over the next couple of weeks.  Here are just a very few highlights for t:oday.

Up, Up and Away on TV tonight
The Down Syndrome NSW documentary about the Up, Up and Away Project, launched in October 2009 is to be broadcast on Aurora TV (a Foxtel community channel) to coincide with International Day of People with Disability, tonight, Friday 3rd December, 2010, at 9.00 pm.

Ramp Up - ABC website for people with disabilities about living with a disability
This site is where you will find ABC stories, interviews and videos on the subject of disability. As you browse through the site, the links you follow will take you to stories as they appeared in their original context, whether from ABC News, a TV program or a radio interview. Please enjoy.

What is International Day for People with Disability for?
Today, in his much loved blog, Rolling Around in My Head, Dave Hingsburger encapsulates experiences of people living with a disability in a series of short anecdotes, one for each month of a year, ending with December ...

I think it is today, a day in December that we celebrate the International Day of Disabled Persons. I admit to knowing nothing of the origin of the day. I admit that I’ve not even looked it up on the computer. I will, of course, because I’m curious by nature. I decided to write this before I discovered what others thought about the day or why others created the day. I just wanted to be sure to say. Society may give us a day, but we, the disabled, have snuck through the door and past pity and preconceptions, the twin prejudices that guard access … and have taken the year. All of it. Every day.

We claim our lives as lives to be lived, fully and freely. We claim our right to independence and our natural state of interdependence. We want nothing more than what others expect. Daily.

Every. Single. Day.

Teen Time Program at Katoomba opening in January 2011: places available

NADO's Teen Time Program at Katoomba will begin in January 2011. Places are currently available for the January school holidays, as well as After School Care for Terms 1-4 in 2011.
Teen Time is an After School Care and Vacation Care program for students with an intellectual disability attending or entering secondary school, 12 -18 years of age, whose parents or carers are working, studying for work purposes, or looking to enter/re-enter the workforce.

For referrals and enquiries please contact Katherine Woodward, RIAP Coordinator, Ageing, Disability and Home Care on 9841 9354 or enquiries to NADO on 9623 9855.

TAD adapted bike for sale

This bike is being sold by a Blue Mountains (NSW) family.  It was adapted for an 11 yr old who has Down syndrome:

I am selling a TAD (Technical Aid for the Disabled) modified bike if you are interested or perhaps you may know someone who is looking for a modified bike. It is a 20” Apollo LYNX.  It comes with a broad seat,  custom built training wheels, hand breaks, single gear and an adjustable bike helmet.  It is in excellent condition.  I am asking $375.00.  If you are interested in having a look or trying it out, contact the seller at   

Thursday, 2 December 2010

Library Thursdays: Think of me first as a person DVD

The theme of our 30th anniversary year, "We've come a long way, baby", is clearly illustrated in a DVD new this week to the library. Think of me first as a person (a film by George A. Ingmire III & Dwight L. Core, Sr., 2006) is a short documentary made by the father of a boy with Down syndrome in the US in the 1960s. It is a view into the life and possibilities of a person with Down syndrome 40-50 years ago. It is a beautiful film made by a loving father, Dwight Core, Sr. (discovered and made into a film by his grandson, George Ingmire). It is sad to see the lack of options for the family but it is also encouraging to know that lives for people with Down syndrome have vastly improved. This is due to the hard work of families of people with Down syndrome (like the Cores) to change attitudes and perceptions. The film has been selected for the (US) National Film Registry in 2006. Also included is My Favorite Child (Roger Richards, 2007), a film which shows Dwight Core, Jr. in his late 40s living with his sister a year before he died. There are other bits of extra footage and commentary from George Ingmire and others involved in the production.
The DVD is a great look at the history of the lives of people with Down syndrome and should be of interest to many.

Other links:
Think of me first as a person Facebook page

Mi Abuelo Productions

Preserving Think of Me First as a Person

If you'd like to borrow the DVD or anything else in the library, please call or email.

Wednesday, 1 December 2010

Dreamnight at the Zoo 2010 cancelled because of very bad weather - but keep your tickets!

What a shame that the weather means that the Zoo has had to cancel tomorrow's planned event:

It is with much regret that the Taronga Conservation Society Australia has had to cancel Dreamnight 2010 due to wet weather. We have been in touch with the Senior Forecaster from the NSW Bureau of Meteorology and the outlook for tomorrow (Thursday 2nd December) is very bleak.

This decision has not been made lightly and is firmly centred around us wanting to ensure Dreamnight is an absolutely magical event for the children.
We very much want intended Dreamnight 2010 attendees to visit Taronga Zoo. Each Admit 4 (four) ticket we have issued can now be used as general entry for four to Taronga Zoo, valid between 4 December 2010 and 30 June 2011.

Please note Dreamnight ticket holders can come in their own time and enjoy the Zoo over the Christmas Holidays or in the first half of 2011.

For information about opening times and activities:

Wordless Wednesday

Teaching children with Down syndrome to ask questions: an excellent blog

Does your son or daughter ask for help when they need it, or do they appear to try to "go it alone"?

Jennifer Bekins' thoughtful and practical post yesterday at Communication Skills for Life, suggests that a more proactive approach in teaching people with Down syndrome of all ages is necessary to help develop their ability to ask for help - a very strategic skill for every day life.

Communications Skills for Life is well worth a regular spot on your reading list.