Address details

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

Thursday, 31 December 2009

2009 in review

It wasn't difficult to find material to make it worthwhile maintaining a blog during 2009 - we published 483 entries, and recorded nearly 20,000 individual visits. Sometimes the content was prosaic but practical (such as announcements about events), occasionally amusing, sometimes newsworthy, and we hope, sometimes thought provoking. It's all here still, but here is a quick look back at just some highlights as is customary at the very end of the year ....

In January, we heard about .... Joe learning to water ski out west, and Grace, like many other 5 and 6 year olds, embarking on the adventure of big school. We learned how Down syndrome might protect against some cancers, and how David and Margaret Hall are supporting children with DS in East Timor.

In February, we mourned the loss of Professor Bill Cohen, celebrated Gerard O'Dwyer's Best Actor Award and Be My Brother's Best Film Award in Tropfest 2009, and the retiring Director-General of the NSW Department of Ageing, Disability and Home Care called for a funding scheme very like the proposed National Disability Insurance Scheme.

In March we noted the launch of In-Control Australia's website, providing information about self-directed funding, noted the 50th anniversary of the discovery of trisomy 21 as the biological mechanism underlying Down syndrome, almost coinciding with World Down Syndrome Day on 21st March.

In April, new Australian Guidelines on Down Syndrome and Alzheimer's Disease were published, and launched in Melbourne by Diana Kerr, a visiting world-expert in this challenging field.

In May, the Joint Standing Committee on Migration announced its long-overdue inquiry into the treatment of people with disabilities, and we learned even more about DS and protection from soft tissue tumours. NSW Rugby League Referees donated their match fees to DS NSW for one weekend (Approximately $12,000).

In June, we heard about Proloquo2go, an iTouch application with great promise, and Aileen Ryan launched her new blog on sign language.

In July, Prof David Patterson's review of Down syndrome research, Molecular Genetic Analysis of Down Syndrome was published, Australia signed a UN Protocol giving a right of appeal on migration decisions; in TV's "Packed to the Rafters", Julie and Dave faced up to prenatal testing for Down syndrome; and DS NSW published its translation of "Welcome to Holland" into Chinese online.

In August, the momentum towards a National Disability Insurance Scheme continued to build, with the release of Shut Out: the experience of people with disabilities and their families in Australia, the report prepared by the National People with Disabilities and Carer Council; we congratulated and thanked the seven competitors in the annual City-to-Surf foot race who ran for Down Syndrome NSW; tributes were paid around the world to Eunice Kennedy Shriver, the founder of Special Olympics who died at 88; the NSW Department of Education and Training proposed changes to the support of students with disabilities in NSW state schools; the 10th World Down Syndrome Congress took place in Dublin; Andrew Case mixed it with Rugby players .... and the DS NSW office moved to Harris Park after 28 years in North Parramatta.

In September Comedy is King was a spectacular night of entertainment and fundraising for DS NSW (more pictures are here); Tracie Sammut appeared in "Home and Away"; webcasting of The Specials began in the UK; a Chinese translation of "Living with Down Syndrome" was published by DS NSW.

In October, Buddy Walk - Australia events were held around the country, marking Down Syndrome Awareness Week; Luke and Caitlin Wilson appeared on the big screen in Times Square, New York; a UK research study confirmed that speech disorder in Down's syndrome is not simply due to cognitive delay; and we congratulated Ben and Debbie Katz on their wedding in Sydney.

In November, the Down Syndrome Research Centre at Stanford University published a new study on brain function; Families Weekend 2009 was a great success at Stanwell Tops; the campaign for a National Disability Insurance Scheme has culminated in a an announcement that the Productivity Commission will conduct an enquiry into funding of disability services in Australia; and the UP! Club joined Facebook.

In December, ABC TV broadcast a documentary about the band Rudely Interrupted to coincide with International Day for People with Disability; the release of the government's Disability Investment Group's report lent further weight to the NDIS campaign; Saxon Graham was recognised by Special Olympics Australia for his voluntary and mentoring work; the first Taronga Zoo Dreamnight event was a huge hit; children with Down syndrome were amongst those having fun at the Special Children's Christmas Party; and the Loyal Foundation supported 14 charities, including DS NSW through sponsorship of the Investec Loyal and her celebrity crew in the Sydney-Hobart Boxing Day Yacht Classic (finishing fourth across the line).

Thank you for your interest and support during 2009. 2010 is shaping up to be just as busy and varied, so keep reading, and subscribe to receive an email alert when new entries are posted.

Library Thursdays: Most Popular of 2009

Resources for babies were, not surprisingly, the most popular items borrowed from the library in 2009. Down Syndrome: The First 18 Months DVD by Will Schermerhorn was the borrowed item as it was in 2008. Gifts: Mothers Reflect on how Children with Down Syndrome Enrich Their Lives, edited by Kathryn L. Soper again was the most borrowed book, second overall.

Development in Practice: Activities for Babies DVD by DownsEd in the UK was the next most borrowed item.

Next came Teaching Children with Down Syndrome about their Bodies, Boundaries and Sexuality by Terri Couwenhoven, then Development in Practice: Speech and Language Activities for preschoolers with Down syndrome (a DVD produced by DownsEd), and then A Kid's Guide to Down syndrome from the Down Syndrome Society of South Australia. All these featured on last year's list.

Next were two from the Topics in Down Syndrome series produced by Woodbine House--Fine Motor Skills in children with Down Syndrome by Maryanne Bruni and Gross Motor Skills in Children with Down Syndrome by Patricia C Winders.

And finishing off the list are Discovery: Pathways to Better Speech for Children with Down syndrome DVD by Will Schermerhorn, Mental Wellness in Adults with Down Syndrome by Dennis McGuire & Brian Chicoine and the DownsEd Issues and Information Series (Speech and Language Development for Infants(0-5 yrs) with Down Syndrome and Issues for Families of Children with Down syndrome were the most popular of those this year). Most of the Issue and Information series is now available for free to view online at:

There were no personal stories in the top ten this year, although Roadmap to Holland by Jennifer Graf Groneberg nearly made it as did the excellent teenage sibling information book, Fasten Your Seatbelt by Brian Skotko & Susan Levine.

On to 2010...we are looking forward to the US Down Syndrome Education Conference DVDs due in January. They have DVDs of sessions for professionals and ones for familes, both grouped into age groups and a speech and language disk (professionals only). Woodbine House also have a couple of interesting books coming up: The Down Syndrome Transition Handbook (due in April) and Managing My Money: Banking and Budgeting Basics (due in July). And hopefully there will be some interesting personal stories as well.

Happy New Year and Happy Reading, Information Gathering and Viewing!

Wednesday, 30 December 2009

Life itself changes the 'Meaning of Life' : a new blog

Penny Green is the Director of the Down's Heart Group, a UK organisation supporting families of people with Down syndrome who also have heart conditions. Just last month, Penny started a blog, Life itself changes the 'Meaning of Life'. Her stories are not always easy reading - some fo the families DHG supports have dealth with very complex and difficult health concerns.

At the moment, she is introducing people with Down syndrome, one a day, over the twelve days of Christmas. Tuesday 29th December's (the 4th Day of Christmas) entry is about Hannah Carty, who is the second person with DS to have had a heart transplant in the UK.

The Down's Heart Group website is a valuable source of information about the common cardiac conditions that people with Down syndrome encounter, and their management.

We've placed a permanent link to both the blog and the website in the right hand column of this blog.

Tuesday, 29 December 2009

Extension of Outside School Hours Care for Teenagers with Disability

The Hon Bill Shorten has announced 15 new providers of outside school hours activities for teenagers with disability nationally. The new services in NSW are:

The Disability Trust, North Wollongong: 6 places

The Disability Trust, Milton: 9 places
Sylvanvale Foundation, Kareela: 9 places

Ability Options Ltd, Goulburn: 16 places
Barnardos Australia, Cranebrook: 11 places

For details of new places in other States, see this press release.

Thursday, 24 December 2009

Library Thursdays: This year's children's books

Next week we'll look at what has been the most frequently borrowed books in the library, but since it's Christmas Eve today, a special time for children, I thought I'd focus on the new children's books this year. These include: More in the See and Sign series: Primary School, Baby Animals, Verbs, Pre-school (plus new editions of the previous titles), My sister, Alicia May, Nina Rose and her Dancing Prince, the interactive readers: How do I feel?, I go to school and Things I do at home, and Victoria Goes to Brazil. All are beautiful books and great to share with your children, their siblings, friends and classmates.

If you'd like to borrow any of these books or any others or have a recommendation for the library, just email or call us in the new year. Merry Christmas. Hope Santa brings you some lovely books this year for you and your children.

Click here to go to view the library lists of children's books in DSNSW's library.

Wednesday, 23 December 2009

Order of Liverpoool awarded to Melissa Cotterill

Down Syndrome NSW congratulates our recently retired Board member Melissa Cotterill, mother of Alyssa, for receiving an Order of Liverpool Award this month. As her citation read, Melissa is “an active fundraiser, group facilitator and ambassador; she has raised more than $55,000 from annual fundraising events”, in particular the amazing World Down Syndrome Day Markets Melissa has organised over the past 3 years.

Dr Andrew McDonald, MP for Macquarie Fields, Liverpool City Mayor Wendy Waller, and Melissa Cotterill.

Liverpool City Mayor Wendy Waller said “I would like to thank [Melissa and the other award recipients] for their ongoing dedication and commitment to our local community. Your efforts have enhanced the quality of life in Liverpool City.”

Alyssa Cotterill charms the guests.

Melissa also runs a monthly morning tea group for parents of children with Down syndrome in South West Sydney – call or email the DS NSW office for details.

Tuesday, 22 December 2009

Government unveils new $1.2 billion Disability Employment Service

Minister for Employment Participation Mark Arbib today announced the successful organisations for the Australian Government’s new $1.2 billion Disability Employment Services.

The new service, to begin operation on March 1, 2010, is a significant improvement in services for people with disability, their families and carers, and employers.

“The introduction of the new arrangements is expected to increase the participation of people with disability in employment,” Senator Arbib said.

“One of most significant changes the Rudd Government has made is to remove the cap on the number of people who can access help.

“We’ve opened up the scheme, so for the first time, every person with disability can be helped to find work.

“This will be of great benefit to many individuals and families across Australia and has received widespread endorsement from both people with disability and their families and the industry.”

Disability Employment Services was developed with a strong focus on social inclusion through more than 12 months of engagement and consultation.

“There is a greater emphasis on skills development, education and training, particularly in areas of local skills shortages,” Senator Arbib said.

“This will greatly improve the employment prospects of a group of people who need extra help to find and keep meaningful employment.”

There will be 66 organisations from more than 1100 sites delivering Disability Employment Services Program A. Program A is for job seekers with disability, injury or health condition who require the assistance of a Disability Employment Service but are not expected to need long-term support in the workplace.

The organisations include Government-owned provider CRS Australia, and a range of small and large private sector and community-based organisations.

Another 209 organisations which currently deliver Disability Employment Network services will deliver Disability Employment Services Program B from about 1150 sites.

Disability Employment Services Program B is for job seekers with a permanent disability and with an assessed need for more long-term regular ongoing support in the workplace.

Senator Arbib announced additional services to support people with disability access employment, including contracts to provide national coverage for the National Disability Recruitment Coordinator and a JobAccess information and advice service which delivers workplace solutions for people with disability and mental health conditions.

Individual participants or their employers with queries about the introduction of Disability Employment Services can call the Department of Education, Employment and Workplace Relations customer service line on 1800 805 260.


Saturday, 19 December 2009

Key Sign? Makaton? Auslan? Signed English?

What do all these terms related to sign language mean? Which one am I using? Which one should I be using? Confused? Aileen Ryan has posted a very useful blog entry here explaining what is what, and what is not.

She has also posted a slightly later entry clarifying where Makaton Australia is going from 2010.

Friday, 18 December 2009

Basic Makaton: Key Signing: Castle Hill, January 2010

Aileen Ryan (from Hands Can Talk) will conduct an accreditation course to introduce key concepts and practice producing 80 signs. The course includes the use of interactive games that test skill and encourage future practice. Certificates from Makaton Australia are provided on completion of this training course. Anyone who supports people who have difficulties with receptive and/or expressive communication is welcome.

9.30am - 2.30pm on Thursday 28 January.

B2, 11 Hudson Avenue, Castle Hill NSW 2154.

Free for parents/family of someone with intellectual disability from the Cumberland Prospect area, $40 pp for paid industry staff and parents/family outside the Cumberland Prospect area. The fee covers the cost of catering provided on the day.

For a registration form, phone Benjamin Fulham or Bianca Kovacic on 1300 668 128 or email of Interaction Disability Services or fax 1300 131 665. Training and Behaviour Intervention Support Service (TABISS).

Source: Warringah Disability Newsletter

Medical negligence case in NSW Supreme Court

Today's Sydney Morning Herald reports on a court case in which a family is suing their doctor over a claim that they were not informed of a high risk screening test for Down syndrome.

The case is not yet resolved.

DreamNight at the Zoo

Still catching up with events from the last few weeks - it's been busy!

DreamNight is an event held in zoos around the world, having originated in Rotterdam.

These photos are from the first ever DreamNight at the Zoo in Sydney - a twilight visit to Taronga Park, on beautiful Sydney Harbour. Families of children with disabilities and special health needs were invited to enjoy an after-hours evening with the animals, entertainers and very generous sample bags for the kids. 65 families of children with Down syndrome joined several hundred others, for a wonderful and very well organised evening that had the children and their parents enthralled. Feedback from families has been very enthusiastic and appreciative.

With such a superb venue, it was bound to be a success!

Shelley has blogged about how much her family enjoyed the night.

Thursday, 17 December 2009

Loyal Foundation supports Down Syndrome NSW through Sydney to Hobart Yacht Race

Hello all friends of Down Syndrome NSW and Bell Partners,

As most of you will know,
The Loyal Foundation is committed to raising funds for charities including Down Syndrome NSW, struggling due to the Global Financial Crisis.

This year, seven brave clients of the firm, together with 13 distinguished sailors are taking on a tough and daunting challenge and competing in the 2009 Rolex Sydney to Hobart Yacht Race all in aid of raising money for The Loyal Foundation.

Our goal is to raise one million dollars ($1,000,000) to help these charities get through this tough period. We are asking for every Bell Partners client to go live on to the website, and donate at least $100.00, which is fully tax deductible and will cost most of you only $50.00 after tax. But of course, if you can spare more, please do, or if you are only able to donate less than the above, we appreciate your contribution, as every bit counts.

Click here to watch the video for a more detailed explanation and I take this opportunity to wish you all and your families a happy and safe Christmas period (hopefully safer than ours).

Kind Regards,

Anthony Bell

To support the Loyal Foundation in the 2009 Sydney to Hobart race, Click Here to make a donation.

Cole Classic swimmer for DS NSW

Ben Goodland is training for the Cole Classic ocean swim at Manly on 7th February 2010, and will be fundraising for DS NSW while he swims those 2 km, finishing at Shelley Beach.

On his Everyday Hero page, Ben says:

The more you give, the more I will train and the less likely I am to drown!

Having grown up with a family member with Down syndrome, this is something close to my heart. I hope you will support me in trying to make opportunities for others that need it more than you or I.

Click here to encourage Ben with a donation.

Thanks Ben! Good luck with the training and the swim.

DS NSW office closing for Christmas and New Year

The Board and staff of Down Syndrome NSW wish all of our members, friends, colleagues and supporters a very happy holiday season, and New Year.

The Down Syndrome NSW office will close on Friday 18th December 2009 and re-open on Tuesday 5th January 2010.

An after-hours number will be available for new parents only, on 9841 4444. Otherwise please leave a voice message on the appropriate number, or call after 5th January 2010.

Library Thursdays: Holiday changes in routine

Holidays are a great time of year but for people who like and depend on routine, it can be difficult. Pamela Wilson, a mother of a young man with Down syndrome, writes about this as Special Needs editor of Bella Online. Terri Mauro also writes about this in Special Needs Children at
We have books in the library (see below) to help with writing social stories that can help with changes in routine. Sandbox Learning have pre-made partially customisable social stories (for a fee). Sample pages of one on "School Breaks" can be found here. They also give tips on 8 ways to make outings less stressful.
In the library we have:
My Social Stories Book by Carol Gray and Abbie Leigh White
The New Social Story Book by Carol Gray
also for dealing with comments from well meaning relatives:
Facing the Crowd: Managing other people's insensitivities to your disabled child by Deborah Fullwood & Peter Cronin.
If you'd like to borrow any of these books or anything else, just email us or call. The library's direct number is 98414410. We will be closed for the holidays but will be back on the 5th January.

Wednesday, 16 December 2009

The first Shabby Chic market in November was a great success, so it is on again!
Vintage by the Sea
Shabby Chic Market

9 am - 4 pm, Sunday, 20th December 2009

Cronulla Masonic Hall,
43 The Kingsway

Entry by donation
(Proceeds to Down Syndrome NSW)
Browse and buy from our stalls ..... furniture, vintage fashion, collectibles, garden and homewares
Enquiries: Robyn 0425 243 520

Special Children's Christmas party

The Special Children's Christmas Party (Sydney) moved to Rose Hill Gardens this year. The outdoor venue was much appreciated . Our thanks to SCCP for including our families, and for their ongoing support of Down Syndrome NSW.

20,000 visits

Overnight, Sitemeter recorded our 20,000th visitor in just over the one year since we started recording - thanks for dropping by!

Tuesday, 15 December 2009

Volunteers - worth their weight in gold!

We are delighted to receive many enquiries each year from potential volunteers - some want to work with children and or adults with Down syndrome more directly and frequently than our activities require, and we point them to alternatives in the wider community.

Some people volunteer regularly in our ongoing programs - UP! Club, Up, Up and Away, in our office, and as we call on them as needed.

Others are available for one-ff or stand-alone events, and most of those events simply could not happen without a virtual army of volunteers to support them.

We have adopted the practice via Buddy Walk of offering yellow T shirts to volunteers at most activities, so that everyone can identify them , giving us a virtual "golden army" of support for DS NSW staff, Board members, members and attendees at events.
Of course we cannot repay them for their efforts and support - that is why they have volunteered, but we certainly do value them. Thank you all - we hope you will join us again!

Families' Weekend Volunteers, 2009

Buddy Walk - Australia, Sydney Volunteers, 2009

More fun at Families' Weekend: on the ground

A bit tamer than the high swing, but "kids" of all ages enjoyed the fun of racing around the track on these man-powered machines at The Tops.

.... although not all the fun was in the riding!

Monday, 14 December 2009

Dandelion Dance Company: video

Dandelion Dance Company is an Ottawa based youth dance theatre company which explores social issues through movement. The company's repertoire is driven by the experiences, reflections and passions of the young women, who range in age from ages 13 to 19, and include such topics as child labour, hunger, war, equality and inclusion.

Click here to see the narrated dance, "I Am".

Saturday, 12 December 2009

There's always more than one pint of view .....

The announcement of new research into ways of ameliorating the effects of Down syndrome often stirs some debate about whether we really want to cure Down syndrome, and why. The recent study of mouse-model brain chemistry has had that effect, some of it reported and commented on by Contrarian (who does not blog exclusively about Down syndrome, but does have a personal interest). It includes a contribution from the lead researcher.

And we've just had International Day for People with Disability, with events and ceremonies, under the auspices of the UN, national and local groups , so it must be a good thing, right? Disability Bitch at the BBC's Ouch! spins it differently.

Friday, 11 December 2009

Mentor and coach honoured

The Wentworth Courier reported yesterday:

Special Olympics Australia has recognised Vaucluse resident Saxon Graham’s commitment to sport, giving him its annual athlete achievement award for outstanding leadership and community building. Read the full story, see Saxon's photo here ....

Thursday, 10 December 2009

Library Thursdays: Toilet Training

Now that summer is here and the school year is coming to a close, we start thinking about lazy days at the beach, Christmas, holidays and...toilet training. It is a perfect time since we are often home more and can rush to the toilet more easily. The weather is warm so children can run around without their nappies and understand what is going on. The library has a few resources that can help the process.

Toilet Time Parenting Packages (Toilet Training for Young Children with Developmental Delay) (developed by Intellectual Disability Services Council in South Australia, 2004) come in two versions: Emily (for girls) and Tom (for boys). They include an information book for parents with readiness checklist and record chart, visuals (cards), star chart and a series of books for the child. Toilet Time packages can be borrowed from the library or are available for purchase from the Service SA shop.
The library also has a DVD available: Are you ready? which includes the animated film, Tom's Toileting Triumph (Tom is the same character as in the Toilet Time package) and also a film for parents.
Also available in the library is One step at a time: Toilet training a child with an intellectual disability (Continence Foundation of Australia, Victorian Branch, 2000.) and there is a section on toilet training in Steps to Independence: Teaching everyday skills to children with Special Needs by Bruce Baker and Alan J. Brightman, 2004.
Online resources:
Visual aids for learning toileting visuals
Articles on toilet training a child with Down syndrome and knowing whether they are ready:

Online booklet for parents with illustrations and captions for children to help with toilet training: Talk about going to the toilet by Nancy Grace
If you'd like to borrow the Toilet Time kit or any other resources from the library, or want some advice on any resources just email us or call. Our direct phone number is (02) 9941 4410. The library is staffed on Tuesdays and Thursdays. We will be closed for 2 weeks from 21st of December - 4th January.

Wednesday, 9 December 2009

The year at DownsEd

The wide range of work sustained internationally by Down Syndrome Education International is always interesting and much appreciated by the thousands of families and professionals who benefit from it.

CEO Frank Buckley sums up DownsEd's achievements for 2009, and looks ahead to research and practice in 2010 in his latest Frank Talk blog post.

Where would we be without them?

Tuesday, 8 December 2009

NSW Parliamentary Inquiry into Education of Students with a Disability

Press release the NSW Legislative Council, 3rd December 2009:

The Chair of (Legislative Council's) General Purpose Standing Committee No.2, Ms Robyn Parker MLC, has announced a new Inquiry into the provision of education to students with a disability or special needs.

“Interacting with the education system can be a frustrating and confusing experience for parents
of a child with a disability or special needs, as they attempt to ensure that their child gets
adequate support to reach their full potential”, said Ms Parker.

“An area of concern for teachers and parents alike is the adequacy of funding for children with a disability or special needs attending NSW schools. The Inquiry was established in recognition of their concerns”, Ms Parker noted.

Click here for the full ext of the press release.

From the Inquiry's web page:

The General Purpose Standing Committee No. 2 has commenced its Inquiry into the provision of education to students with a disability or special needs attending primary or secondary schools, with a particular focus on what can be learned from International and Federal approaches, and approaches in other States and Territories.

The Committee encourages public participation in the Inquiry process. Written submissions addressing the inquiry terms of reference can be emailed, faxed or mailed to the committee secretariat by the closing date, 19 February 2010.


» Call for submissions: 9 Dec 2009
» Submissions close: 19 Feb 2010

Down Syndrome NSW will make a submission to the Inquiry, and parents and other interested members of the public are invited to make submissions.

Visit the Inquiry's web pages for details of the terms of reference of the Inquiry, of the public hearings scheduled for 22nd and 23rd March 2010, and for details on making a written submission.

Monday, 7 December 2009

Inquiry into Planning Options and Services for People Ageing with a Disability

The Australian Government's Senate Community Affairs Committee has announced an
Inquiry into Planning Options and Services for People Ageing with a Disability .

Terms of reference
Download this document (PDF 9KB)

Access to planning options and services for people with a disability to ensure their continued quality of life as they and their carers age, and to identify any inadequacies in the choice and funding of planning options currently available to people ageing with a disability and their carers.

The Committee is seeking written submissions from interested individuals and organisations preferably sent electronically by email to as an attached PDF or Word format document. The email must include full postal address and contact details.

Alternatively, written submissions may be sent to:

Committee Secretary
Senate Community Affairs References Committee
PO Box 6100
Parliament House
Canberra ACT 2600

Closing date for the receipt of submissions is 28 May 2010.

Young Carers NSW Newsletter

Young Carers supports young people (under 25) who have a role in caring for someone with an illness or disability, including siblings, who live in NSW.

The Summer 2009 Young Carers NSW Newsletter details a number of activities and programs that might be of interest and available to siblings of people with Down syndrome, including in this edition, camps, and media training. Expressions of Interest are open for an Adult Young Carer Retreat.

Access it online here, or you can subscribe to receive it by post.

Young Carers is a project of Carers NSW.

Friday, 4 December 2009

Disability Investment Group report released

On 3 December 2009 the Government released the Disability Investment Group report The Way Forward: a new disability policy framework for Australia.


Joint Media Release from The Hon Jenny Macklin MP, Minister for Families, Housing, Community Services and Indigenous Affairs, and The Hon Bill Shorten MP, Parliamentary Secretary for Disabilities and Children's Services


The Australian Government today released the Disability Investment Group's report commissioned as part of our commitment to set out a ten year agenda for coordinated, across-government action for Australians with disability.

The report, The Way Forward: A new disability policy framework for Australia, is an important contribution to the Australian Government's National Disability Strategy. With the number of people with a severe or profound disability predicted to rise to 2.3 million by 2030, the Government recognises the need to look at how we can better support people with disability over the long-term.

The Government has already responded to the report's primary recommendation, announcing last week that the Productivity Commission will undertake a comprehensive feasibility study into a national disability insurance scheme.

The Productivity Commission will investigate the feasibility of new approaches, including a social insurance model, for funding and delivering long-term disability care and support for people with severe or profound disabilities however they are acquired.This will include detailed modelling and analysis to determine if a long-term disability care and support scheme would be appropriate, practical, economically responsible and whether it would fit with Australia's health, aged care, income support and injury insurance systems.

The Government has also announced the appointment of John Walsh as a part-time Associate Commissioner to the Productivity Commission inquiry. Mr Walsh was instrumental in the development of the Australian Registry of Spinal Cord Injury and is a board member of the NSW Motor Accidents Authority and the NSW Home Care Service.

The Government and the Productivity Commission will also be advised by an independent panel of seven people who bring considerable experience across the disability sector, including Chair of Yooralla Bruce Bonyhady, Chair of the National People with Disabilities and Carer Council Rhonda Galbally, and Australian Medical Association President Andrew Pesce. The Productivity Commission will report to the Government in July 2011.

The Disability Investment Group was established by Community Services Minister Jenny Macklin and Parliamentary Secretary for Disabilities Bill Shorten last year to provide advice on ways to explore funding ideas from the private sector to help people with disabilities and their families access greater support and plan for the future. The report also makes recommendations on employment, housing and research. These recommendations will inform the Government's policy consideration in developing the National Disability Strategy.

The Disability Investment Group has demonstrated great commitment and insight in this significant area of public policy and the Government thanks them for their hard work and dedication to people with disability. The report and membership of the Disability Investment Group can be found The Way Forward: a new disability policy framework for Australia.

Independent panel
Bruce Bonyhady (President of Philanthropy Australia and Chair of Yooralla)
David Bowen (Chief Executive Officer of the Lifetime Care and Support Authority in NSW)
Dr Rhonda Galbally (Chair of the National People with Disabilities and Carer Council)
Ms Robyn McKay (previously served in Senior Executive positions in the Department of Families, Housing, Community Services and Indigenous Affairs)
Dr Andrew Pesce (Federal President of the Australian Medical Association)
Ms Ann Sherry AO (former Chief Executive Officer of Westpac New Zealand and Group Executive, Westpac New Zealand and the Pacific)
Mr Ian Silk (Chief Executive of AustralianSuper)

Thursday, 3 December 2009

ABC 1 tonight : Rudely Interrupted

Tonight on ABC 1, at 9.35 pm a documentary about the band, Rudely Interrupted.

Program details - click here.

Click here and here for more information

Library Thursdays: Love is in the air

The Merry Makers documentary(The Music in Me) is a popular DVD in the library and now we have a great companion book to it, Love is in the Air by Sue Williams (ABC Books, 2009.) A more complete history of the dance group is told in the book and then it is followed by profiles of many of the members, guest stars, helpers and groups that have started up after master classes with the Merry Makers. There are photos throughout the book of the performers and their families.
The history is very interesting as are the profiles. After the initial history, the chapters can be read separately as there is a bit of repetition of events being told in different contexts. The story is totally inspirational and makes you wish every person could belong to such a group. Many of the dancers profiled in the book are members of Down Syndrome NSW so you may see many that you recognise. Tonight as part of the International Day of People with Disability, the Merry Makers will perform at the Sydney Theatre in Walsh Bay.

If you'd like to borrow this book or any other library material, please email or phone us.

International Day of People with Disability: today

International Day of People with Disability (IDPwD) is a United Nations sanctioned day that aims to promote an understanding of people with disability and encourage support for their dignity, rights and wellbeing.

IDPwD also seeks to increase awareness of the benefits of the integration of people with disability in every aspect of political, social, economic and cultural life.

IDPwD brings together people with disability, community organisations, businesses, individuals and all levels of government. IDPwD unites people around the world in celebrating and acknowledging the contributions, skills and achievements of people with disability.

To see what events are being held in 2009 in your town or city, please visit the International Day of People with Disability website, and the Don't DIS my ABILITY campaign website

Wednesday, 2 December 2009

A good gift idea for Christmas .....

We have a few copies of Sandra Wise's book for children, Nina Rose and Her Dancing Prince available for purchase. With Christmas just a little way around the corner, think of the gift possibilities - and you will be giving twice over. Half of the purchase price will be donated to DS NSW by the author.

If you are looking for a gift for a teacher, the donation of a book to the school, or preschool library is often very welcome, and will benefit everyone throughout the year.Copies are $19.95 each (add $5.05 if you need it posted).

Please contact our librarian, Kathi Beck at or call our Angela at our office on 9841 4409 to order. Details of the book are here.

birth incidence of babies with DS increasing in UK, US

Frank Buckley, CEO of Down Syndrome Education International has commented on new figures published in the journal Pediatrics indicating a rising birth incidence of babies with Down syndrome by producing a clear comparative graph of statistics from the UK and the US, calling on policy makers to "take note!"

Prevalence of Down Syndrome Among Children and Adolescents in 10 Regions of the United States is published online in Pediatrics, the journal of the American Academy of Pediatrics, (Vol. 124 No. 6 December 2009, pp. 1565-1571 ). The researchers estimated prevalence of Down syndrome among children and adolescents up to 19 years, in 10 US regions. The birth incidence increased by just over 30% from 1979 to 2003.

Tuesday, 1 December 2009

Relationships and Private Stuff: workshops for early 2010

Liz Dore, from Relationships and Private Stuff presents the following workshops to support people who experience barriers to forming relationships:

Relationships and Sexuality (15 - 20 years)
Wednesday 8th January 2010, Burwood 10 AM - 3 PM.

Friendships and Puberty Stuff (10-15 years)
Friday 13th January 2010, Burwood 10 AM - 3 PM.

Friendship and Dating Skills (16 - 25 years)
Fridays 15th and 22nd January 2010, Burwood 3 PM - 6PM.

Friendships and Hugs (16 - 25 year olds with moderate - severe disability)
Wednesday 20th January 2010, Burwood 11 AM - 2 PM.

Friendship and Dating Skills (18 - 25 years)
Saturdays 13th and 20th February 2010, Chatswood 10.30 AM – 1.30 PM

Friendship and Dating Skills (25+ years)
Saturdays 13th and 20th February 2010, Chatswood. 3 PM – 6PM

Note that some dates are during the school holidays - it might be a handy time to meet some new people through the workshops.

For all enquiries ring 0416 122 634 or email or visit

Monday, 30 November 2009

Does your son or daughter have obstructive sleep apnoea?

Would you like to contribute to medical education?

Down Syndrome NSW has been invited to participate in a learning unit for third year medical students from the University of Western Sydney. The students will be researching the impacts of sleep apnoea on people with Down syndrome of all ages, and the impact on everyday family life.

They need to speak with families on two occasions, during March/April 2010, for some hands-on information. The interviews/meeting can take place in your home, at you convenience.

We are interested in people with DS of all ages, and from any area, whether your son or daughter has been successfully treated for sleep apnoea or not, whether you have completed formal sleep studies or not.

If you are interested in participating, please contact us on – initial expressions of interest can be made before the Christmas break

The Enchanted Forest - fundraiser, 2010

Kids for Life 6th Annual Ball

The Enchanted Forest
27th March 2010

Hordern Pavilion

Go to for tickets and further details.
Down Syndrome NSW will be a beneficiary in 2010.

Sunday, 29 November 2009

Good Weekend magazine

The Good Weekend magazine (distributed with the Sydney Morning Herald and The Age in Melbourne) is celebrating 25 years of publications. In a special edition to mark the occasion, GW reprised a selection of highlights from the popular "The Two of Us" column, with a catch -up on what "seven of the most memorable duos" are up to now. Among them were Nick Hogan, and Damien Jones, who featured in July, 2006. Greg Bearup brings readers up-to-date:

Damien Jones was a young punk at uni when he met a Down syndrome kid, Nick Hogan, who insisted on joining his game of park soccer. They became friends and, after checking him out, Nick's parents asked Damien to be their son's babysitter and, later, flatmate.
"Damien is the closest friend I have ever had," said Nick. "I love him. He makes sure I do the right things. He helps me save my money. He is always gentle and tells me funny jokes."

Nick helped Damien to grow, too. "I had come from a pretty dysfunctional family ... It gave some structure to my life and gave me a sense of responsibility to be there for him."

Damien has moved to Melbourne, but "we talk on Skype all the time and [my wife] Karoline and Juno, our little girl, are often up in Sydney, visiting Nick and his family," says Damien. "Nick is fantastic with Juno and they'll play together for hours." Damien and his family are planning to go on a Pacific cruise with Nick and his girlfriend, Ruth. "It's gonna be crazy," says Damien. "Cool, but crazy."
Click here for the original column which was reprinted in the DS NSW Newsletter, Spring 2006.

Playgrounds for everyone

These children’s playgrounds have been designed to be accessible for all kids, and are open to everyone, so kids can play side by side.

All Abilities Playground
Bernie Mullane Sports Complex
Marella Avenue, Kellyville
(this one will be officially opened by Baulkham Hills Shire Council on International Day of People with Disabilities, 3rd December 2009)

Livvi's Place,
Timbrell Park, Five Dock

World Down Syndrome Day Art Competition!

Enter our World Down Syndrome Day Art Competition – and help us create a series of unique greeting cards for World Down Syndrome Day, 21st March 2010.

The greeting cards will contain seeds of native plants, so recipients of the cards will be able to plant a seed for World Down Syndrome Day – and help understanding and acceptance of people with Down syndrome to blossom and grow in our community.

Entries from children and adults with Down syndrome and brothers / sisters especially encouraged.

Send drawings, paintings or artworks in whatever medium you like to or by post to (no stamp needed):

Phillip Prideaux, Executive Officer
Down Syndrome NSW
Reply Paid 2356
North Parramatta NSW 1750

Prizes include the honour and glory of having your artwork on one of the official World Down Syndrome Day greetings cards, as well as some other goodies.

Competition closes: Friday January 29th 2010

Inquiries: Priscilla Leong 9841 4402,