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: www.down-syndrome.org/information

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.

Source: http://www.deewr.gov.au/Ministers/Arbib/Media/Releases/Pages/Article_091209_135821.aspx

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

What?
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.

When?
9.30am - 2.30pm on Thursday 28 January.

Where?
B2, 11 Hudson Avenue, Castle Hill NSW 2154.

Cost?
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.

RSVP?
For a registration form, phone Benjamin Fulham or Bianca Kovacic on 1300 668 128 or email tabiss@interactiondisability.com 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,
www.loyalfoundation.com.au 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
CEO


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 About.com
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
CRONULLA

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!