Address details
Thursday, 11 March 2010
Library Thursdays: Behaviour resources
Wednesday, 10 March 2010
Run with the LAW !
You could make history by joining your local police forces (Law Enforcement Torch Run) and Special Olympics athletes for the first ever Run with the LAW.From 19 March to 19 April 2010, police officers will take the 'Flame of Hope' through 40 cities across six states and territories in 29 days to support Special Olympics Australia, the charity that transforms the lives of people with an intellectual disability through regular sports participation and social inclusion.
Special Olympics needs your support to continue running 11,000 weekly sports sessions for people with an intellectual disability across 250 sports clubs in Australia.
The 2010 Run with the LAW fun run aims to promote equality, acceptance and friendship of people with an intellectual disability, and you’re invited to be part of this history-making event. Everyone is welcome!
Simply register to run a full leg, half leg or last 100 metres in any of the 40 events across Queensland, New South Wales, ACT, Victoria, Tasmania and South Australia and you will be the first to experience the fun and excitement of Run with the Law and, at the same time, make a difference to people with an intellectual disability living in your community.
So, register today. Just click REGISTER TO RUN to start your own fundraising page:
www.runwiththelaw.com.au
or contact runwiththelaw@specialolympics.com.au
Launch of book project: call for submissions
The submissions will be compiled into a national book, with the working title Now I See. The book is aimed at raising awareness (and challenging outdated ideas) about life today for children with Down syndrome and their parents. All submissions will be considered. More information: www.nowisee.com.au
Fraser Pollock - exhibition
The gallery is open Wednesday to Saturday, 11 am - 6 pm. Ph 9320 5683
Accessible Arts: March 2010 Newsletter
Monday, 8 March 2010
2 new Special Olympics dance groups : Inner West
Two new dance classes for people with intellectual disabilities are being established in conjunction with Special Olympics Inner West region. Participants must register with Special Olympics to join in the regular program.
Registration is $70 per year and allows you to participate in any Special Olympics Program
1. Haberfield
Wednesdays, 5.15. - 6.30 pm
from 10th March 2010
Mervyn Fletcher Hall, 18 Dalhousie Street
Haberfield
Cost: $5 per session– paid per term
For more information about the program and registration please contact:
The Registrar ph. 0402 154 167, or maryrosewigan@optusnet.com.au
2. Canada Bay (Dorothy Cowie School of Dancing, sponsored by Canada Bay Council)
5.15pm-6.15pm Tuesdays, from Tuesday 9th March
Age is open from 7 years - Jazz/Hip Hop
Canada Bay Civic Hall
1a Marlborough Street Cnr Marlborough and Lyons rd)
Drummoyne
(Parking in Marlborough St and across the road in Franklin’s car park.
Tuition $50 per dancer per school term
For further information, volunteering & registration for Special Olympics contact:
Kathleen Collins , Sports Co coordinator for Special Olympics NSW Sydney Inner West Region , at kath2012@tpg.com.au or Ph 0405 100 753
Ten Things people with Down syndrome would like you to know ....
If you wish to pass on a direct link, use: www.youtube.com/watch?v=tDjnNDRP_2o
Sunday, 7 March 2010
From the Times Online - Simon Barnes: life with a son with Down's syndrome

Simon Barnes is a British Sports journalist and author, whose writing about his young son Eddie we have enjoyed and admired over the years. Now he's written a new book (not just about having a child with Down syndrome), and the Times Online has published an extract this weekend, about Eddie's love of books, how sign has enhanced his communication, and he poses the question, What is Eddie for?
His short answer is Eddie’s function is to be loved, and to love in return. Perhaps that is everybody’s ultimate function. Read the extract, and then maybe the book, My Natural History: The Animal Kingdom and How it Shaped Me by Simon Barnes (Short Books, not yet released) for the long answer.
The comments are appreciative and apt, without being overly sentimental - such as Thanks.......refreshing to read a piece that is so delightfully uncomplicated.
An earlier about Eddie, by Simon Barnes:
Saturday, 6 March 2010
All the world's a stage - some can't get in
..... amid the graphs and tables illustrating the positive findings in the Australia Council for the Arts report More than Bums on Seats: Australian participation in the arts was some less palatable news: people with disabilities and migrants from non-English-speaking countries are being left behind.
The council's last similar survey was released in 1999. How far has access to the arts progressed for people with disabilities – one in five nationwide, or more than 4 million? "Not very far would be my summary," Australia's Disability Discrimination Commissioner, Graeme Innes, says. Read on ....
ABC TV - The New Inventors ‘Access and Ability Special’
Featuring inventions by, and for people with a disability, they will look at some of the ingenious ways inventors are helping to ensure everyone has equal access to life, work and fun.
To celebrate these important innovations, James O'Loughlin will be joined by a special panel of experts living with a disability: paralympian Kurt Fearnley, filmmaker and presenter Sofya Gollan, and Federal Discrimination Commissioner Graeme Innes.
The show will also include an Auslan sign language interpreter, Jemina Napier, translating for hearing impaired viewers throughout the program, a first for The New Inventors.
Summary of upcoming events, March - May
Seminars for families and professionals in Orange, NSW 11th - 13th March
T4-321: World Down Syndrome Day 21st March 2010
Dance Like Nobody's Watching, film screening, Sydney 22nd March
Scrapheap Adventure, to Wanaaring NSW, 3rd April
Seminars with Assoc. Prof Keith McVilly, Rosehill, 30th April - 1st May
Friday, 5 March 2010
Survey of people with disabilities dealing with legal services
If you have a disability and have been in contact with any of the services listed below in the last twelve months, you are invited to share your experiences as part of a study. The confidential feedback will help to improve these legal services for people with disabilities.
- Anti Discrimination Board
- Administrative Decisions Tribunal
- Law Access
- Local Court
- Office of the Protective Commissioner
- Public Trustee
- Registry of Births Deaths & Marriages
- Victims Services
When: The study is taking place during February and March. It will take about an hour of your time.
Where: A location close to your home will be organised for the interview.
Participants are welcome to bring an advocate to the interview. Participants will receive a $75 Myer voucher as a thank you for participating in the study. For more information or to register your interest, call Richard at Taverner Research on 1800 212 290 or email dsurvey@taverner.com.au
Source: Carers NSW e-Bulletin, February 2010, PWD
Draft Australian Curriculum - consultation online; a challenge from St Lucy's School
One public information session is scheduled for NSW, on 25th March, at a venue to be confirmed: www.acara.edu.au/public_information_sessions.html
The Chairman of the Australian Curriculum Assessment and Reporting Authority (ACARA), Prof Barry McGaw, is scheduled to be a keynote speaker at the 2010 National Conference of the Australian Association for Special Education in Darwin in June. AASE is actively monitoring, commenting on and contributing to the development of the national curriculum, and has highlighted ACARA's own guiding principle that
"..... the curriculum should be based on the assumptions that all students can learn and that every student matters. It should set high standards and ensure that they apply to all young Australians while acknowledging the different rates at which students develop" (ACARA, The Shape of the Australian Curriculum, p. 8)
to ensure that it is not compromised.
* * * * * * * * * * * *
St Lucy's School at Wahroonga (in northern Sydney) has issued a flyer about their planned challenge to the Australian Government, providing this information:
The Federal Government has heralded a new era in Australian education, an Education Revolution. They have said nothing about children with disabilities.
Students and parents of St Lucy’s and other special schools,together with friends of children with disabilities, are travelling to Canberra to put this question to the nation’s leaders.
Join us in asking the government:
Are children with disabilities part of the Education Revolution?
Thursday 18 March 2010
11.00am Gather in Federation Mall in front of Old Parliament House, Canberra
12.00pm Walk from Old to New Parliament House
12.30pm Children gather into one group to sing ’We Are Australian’
1.00pm Lunch
1.30pm Fun activities for the children
3.00pm Home
To help us cater for the day, please let us know if you’ll be joining us – call St Lucy’s School on 02 9487 1277 or email karenn@stlucys.org.au
Thursday, 4 March 2010
Library Thursdays: The words of people with Down syndrome
Many of our resources in the library have excerpts written by people with Down syndrome and there are several where they have the main voice. Bus Girl by Gretchen Josephson (Brookline Books, 1997) is a book of poems written over the course of several decades. Count us In: Growing up with Down syndrome (Harcourt, 1994, 2007) is the once ground-breaking book by 2 young men with Down syndrome now with an updated afterword. A Special Kind of Hero by Chris Burke (Doubleday, Authors Guild Backinprint.com, 1991, 2001) is the actor's life story. I Just Am: a story of Down syndrome awareness and tolerance by Bryan and Tom Lambke (Five Star, 2006) is cowritten by a young man and his father about life. And another book, The Eyes of Raymond
Hu (Art Media Resources, Chicago, 1996) while not a written story, gives Raymond's voice through his paintings (one shown on the right) . There are films too--OK, Let's talk about me,(SBS, 2004) about a 17 year old's view on life. Also the film, Dance Like Nobody's Watching which is showing for World Down Syndrome Day.Recent online newsletters
People With Disability (PWD) E-Bulletin No 59, February 2010
Young Carers E-News, February 2010
Wednesday, 3 March 2010
Latest DS NSW online publications
Down Syndrome NSW e-Update, March 2010 is now available online here. The e-Update is a monthly bulletin of events and short information items.
A list of items added to the Down Syndrome NSW library collection from December 2009 to February 2010 is now available here. Members can arrange loans by email, phone or in person. Contact the librarian at library@dsansw.org.au or phone 9841 4410
Chuckle Club - friendship group for children with Down syndrome

Click here to download the schedule March - August, 2010
Tuesday, 2 March 2010
Key player found for transient leukaemia seen more commonly in babies with Down syndrome
The study findings, published in the March 1 issue of Genes and Development, may also help in understanding other forms of leukemia, the researchers say. Click here to read the full text of the news release from Children's Hospital, Boston.
Citation:
Jan-Henning Klusmann, Zhe Li, Katarina Bahmer, Aliaksandra Maroz, Mia Lee Koch, Stephan Emmrich, Frank J. Godinho, Stuart H. Orkin, Dirk Reinhardt. miR-125b-2 is a potential oncomiR on human chromosome 21 in megakaryoblastic leukemia. Genes and Development March 1, 2010: 24(5)
The full text of the article is available free online from the journal's website, here, either as a web page or a .pdf file.
In defence of family carers, and of improvements in employment support for people with disbailities
Great strides in work for disabled, from Peter Tanner
Caring families need our support from Emeritus Prof Trevor Parmenter and from Peter Bailey
Monday, 1 March 2010
Beware what you wish for in supported accommodation ......
Housing scheme for disabled adults in doubt as minister backs down
Erik Jensen, Sydney Morning Herald, March 1, 2010
The report prompted this media release from RASAID this morning:
Lynch Lies and Plays Catch 22 With Ageing Carers of Intellectually Disabled
The parents of a group of intellectually disabled adults in Sydney’s Ryde area are horrified that Paul Lynch, the NSW Minister for Ageing, Disability and Home Care (ADHC), has denied he ever gave in-principal approval to their innovative plans for supported accommodation for their 20 sons and daughters.
According to an article in today’s Sydney Morning Herald, “Mr. Lynch told the Herald the plan would be considered once land was available. '… I did not give in principle support to the RASAID proposal, as the land has not been secured and there would be numerous other steps which would have to be undertaken.'”
He also denied signing his name in the air after he’d given Jenny Rollo, now President of RASAID, verbal support of their plans. Ms Rollo says there were several witnesses to the aerial signature, at least one of who is prepared to swear in a statutory declaration that her version of events is correct. The others are members of the NSW Labor Party or employed by Minister Lynch. Commenting on this “signature” to Ms Rollo and another RASAID mother on the day it occurred, Lynch’s aide said, “If Minister Lynch wants this to happen, it WILL happen.”
But worse than being called a liar, Ms Rollo is outraged that the minister says the group’s model would be considered once land is secured. “He’s set up a Catch-22 situation,” she says.
Land owned by the NSW Department of Health in the Ryde district was identified as being available to RASAID in early 2009. At a meeting on June 16th 2009 between senior bureaucrats from the NSW Department of Health, the NSW ADHC, RASAID and the NGOchosen to build the project, an acre of land was to be offered for this project.
“The senior bureaucrat from ADHC told us at that meeting that even if our cluster housing was built, there was no guarantee that all, or in fact that any of our children would go into it because of the department’s Vacancy Management Policy. The plans of the land were then removed from the table, literally and figuratively,” says Ms Rollo.
ADHC’s Vacancy Management Policy stipulates that the department decides who goes into what available beds in NSW, rendering RASAID’s plans for an intentional community for its adult children with intellectual disabilities impossible.
Undeterred, Ms Rollo and another RASAID mother wrote to Minister Lynch, asking for him to meet with them and to override ADHC’s policy to allow their proposal to go ahead. The minister refused a meeting and said, via his staff, “We have no further developments to advise RASAID on at the moment.”
On November 2nd last year, four months after the original meeting when the land was to be offered, Ms Rollo received confirmation via the ADHC that the Department of Health land was still available for their project.
“It beggars belief that he now says he’ll consider our proposal once land is secured. Land can’t be secured unless he makes an exception to his department’s policy. It is that alone that is preventing the land from being offered,” says Ms Rollo.
RASAID is calling on Premier Kristina Keneally to step in and remove the bureaucratic barriers that are preventing RASAID’s development from going ahead.
RASAID’s supported accommodation model falls within ADHC guidelines for a cluster development to house intellectually disabled people. The model proposes that RASAID’s sons and daughters live together within the Ryde area, with their friends, near their families, day programs and work placements. The current system for housing intellectually disabled adults who can no longer live with their ageing or dead parents is ad hoc. The state meets only 7% of supported accommodation needs of adults with intellectual disability.
RASAID members are in their 50s, 60s, 70s and 80s. The oldest parent is a single mother, aged 87, still caring for her 51 year old son.
For more information on RASAID and contact details: www.rasaid.org.au
"Give disabled the chance to show their work skills"
Positive behaviour support and friendships: 2 seminars with Keith McVilly

1. Behaviour Management
Encouraging positive behaviour in your students with Down syndrome at school
9:00am - 3:00pm
Friday 30th April 2010
Cost: $132 per person (non members); $99 per person (DS NSW members)
2. That’s what friends are for..Supporting young people with Down syndrome to make and keep friends
9:30am- 3:30pm
Saturday 1st May 2010
Cost: $55 per person
(Funded by NSW Health, under the NSW Carers Program, and Down Syndrome NSW, as a component of the “All the Way” Project, 2007-2010)
Registrations close: 23rd April 2010
Click here for a detailed brochure and registration form for Keith McVilly seminars
Sunday, 28 February 2010
Young Carers - newsletter, events, activities and support
Two camps for young carers are currently open for applications:
Gamarada Retreat for 18-25 year olds
June 28 - July 1, 2010
Applications need to be in by Friday March 12
It is described as a wellbeing retreat for adult young carers aged 18-25 years .....a great oppotunity to relax and take part in some fun activities with other young adult carers, (and) to share your stories and learn how others balance caring with work, study and life in general
Any young carer aged 18-25 from anywhere in NSW is eligible to apply.
Camp One Mile Beach
Open to all young carers aged 8-12 years old who live in the Hunter or New England regions.
Friday May 7 - Sunday May 9, 2010
One Mile Beach Holiday Park, Anna Bay
Cost: Free - includes accomodation, all meals and activities.
To Apply: contact Kathy Jones at EDuCARE on 02 4921 4895
Click here for details of these events from the Young Carers website
Many siblings of people with Down syndrome fit the criteria for accessing support through Young Carers: www.youngcarersnsw.asn.au
Carers NSW Carer Representation Program
The Carer Representation Program provides training, information and support to carers to enable them to act as Carer Representatives, representing Carers NSW and the wider body of carers.
The aim of the Carer Representation Program is to inform a range of professionals and the broader community of carers’ perspectives.
Carer Representatives activities include:
- participation on committees, advisory groups etc;
- guest speaking;
- forums;
- conferences;
- media interviews;
- focus groups.
Carers NSW is seeking the involvement of carers from diverse communities and backgrounds, with carers throughout metropolitan, regional and rural NSW invited to join the Carer Representation Program.
Service providers are encouraged to inform carers of this opportunity.
No experience is required, but an interest in getting the carers’ perspective heard is a must.
For more information please contact Alison Parkinson. Ph (02) 9280 4744 or email alisonp@carersnsw.asn.au
Saturday, 27 February 2010
Free online events about current research from DownsEd
Find out more about our research at free online eventsWe are launching a series of online events presenting the current research activities of Down Syndrome Education International and our partners.
These live events are free to access online and by telephone for families, professionals and scientists worldwide.
Over the past 30 years, developmental and educational research (conducted by us and others) has increased what is known about the learning difficulties experienced by people with Down syndrome. This research has improved teaching techniques and transformed education for many thousands of young people with Down syndrome today. However, much remains to do. Many important questions remain unanswered and many specific interventions have not been sufficiently evaluated.
Our series of online events will present our current research activities and discuss how we are working to answer critical questions about development and education for children with Down syndrome.
Program outline:
Science fact and fiction - What research has delivered for people with Down syndrome and what it might deliver in the future?
Friday, 26 March 2010 (8:00 pm Sydney)
Research progress at Down Syndrome Education International – current projects and future priorities.
Friday, 23 April 2010 (6:00 pm Sydney)
Is autism being over-diagnosed? What do we learn from early autism screening?
Friday, 14 May 2010 (6:00 pm Sydney)
Can we improve children's problem solving skills? - pilot data and future plans.
Friday, 21 May 2010 (6:00 pm Sydney)
What are we learning about the links between signing and speaking?
Friday, 28 May 2010 (6:00 pm Sydney)
Developing and evaluating a classroom reading and language intervention - progress one year on.
Friday, 11 June 2010 (18:00 Sydney)
Can we improve children's working memory skills? - results of a small training study and next steps.
Friday, 18 June 2010 (6:00 pm Sydney)
Presenters will include Prof Sue Buckley, Stephanie Bennett and Dr Kelly Burgoyne.
Note that each event is being presented on two occasions - one of them (given here) kindly timed for Australasia and Asia. Families might well want to pass this news on to their child's school and/or therapists.
Visit DownsEd for more information about each event, and to register, and for more about the Sue Buckley Research Fund.
Family Advocacy - In Control Australia forum
Monday 22 March 2010
Burwood
Register online at www.family-advocacy.com or contact Family Advocacy for a registration form: email philippa@family-advocacy.com or phone (02) 9869 0866
Family Advocacy also has several “Moving Out” workshops scheduled during March - check the website for details.
WROK -a camp for teens with disabilities
What is WROK?
WROK is a 5 day camp run in the April school holidays each year for teenagers (12-21) with physical and/or intellectual disabilities and disorders.
Where/when does WROK happen?
Blue Gum Lodge in Springwood, NSW which is in the beautiful Lower Blue Mountains region.
7-11 April 2010
Who runs WROK ?
WROK is an Anglican Youthworks camp run by dedicated volunteer leaders many of whom have backgrounds in teaching (general and special education). Contact the Team for some profiles.
For more information and to locate application forms, visit the very cool WROK website: www.wrokcamp.com and read the FAQ pages.
What about younger kids?
This year for the first time WROK is inviting 8 - 12 year olds to experience just a taste of WROK! camp. Saturday 10th April, 2010 will be a special day for our potential younger campers. It will be a fun filled day and parents can either choose to stay for the day,watch the fun and relax in our special cafe. Or if you choose to leave your camper with us and explore the beautiful Blue Mountains.
You can contact the WROK team directly by email: wrokcamp@gmail.com
Friday, 26 February 2010
Dance Like Nobody's Watching: film screening, Sydney 22nd March

This documentary gives us a clear insight into what it feels like to have Down syndrome in 21st century Australia. (Voice, March 2010)
Hayden Cremorne Orpheum Picture Palace
380 Military Road, Cremorne
Monday, 22 March, 6.00 pm
Liz Collins and Paul Matley will be present
Supported by a screening of the 2009 Tropfest-Best Film
Be My Brother (starring Gerard O'Dwyer)
Tickets: $20
Book online here, or phone Down Syndrome NSW, on 9841 4444
(proceeds to Down Syndrome NSW)
Cricket Carnival Day: 13th March, Queens Park

11am to 3pm
Queens Park cricket fields 20 and 23, Darley Rd, Queens Park
Parking – available in Darley Rd – 4 hour parking limit
Ph. 02 8302 6033
Mob. 0400 431 776
Get Active with Rugby League - Inclusive Rugby League Program
- Team Trainer
- Team Manager
- Gear Steward
Friday 26th March 2010, 5.30pm - 7pm
Phone: (02) 4725 6000 Email: john.w@nswrlwsa.com.au
Thursday, 25 February 2010
Library Thursdays: DownsEd Web Seminars and More See, Sign & Say books in the library
This week the first of the web-based seminars from Down Syndrome Education International given at a time easily accessible to NSW members have started. This a great opportunity for parents, teachers and therapists to attend the excellent training sessions given by Sue Buckley and her colleagues without having to go around the world.
New this week in the library are more titles from the See, Sign & Say series of books. These books have a photo/picture, word and sign on each page. The new acquisitions of this highly popular series from Tara Hearne & Aileen Ryan include: Transportation, Places to go, Baby's 1st words, Sports, and Colours. Aileen's Hands Can Talk website is now back and updated so these books and other signing resources can be purchased from there. They are also available to be borrowed from our library. In addition to these new titles, we also have Emotions/Feelings, Objects, Opposites One & Two, Directions, Food, Pre-school, Primary School, Alphabet, Animals, Baby Animals and Teen Feelings. Just email or call us if you'd like to borrow these or anything else.More Outside School Hours Care providers for teenagers with disability
The new services in NSW will be provided by:
- The Disability Trust, North Wollongong and Milton
- Sylvanvale Foundation, Kareela
- Ability Options Ltd, Goulburn
- Barnardos Australia, Cranebrook
Contact your local ADHC office for information about vacancies and applications for places.
Bowel Group for Kids
These conditions occur more commonly amongst children with Down Syndrome and BGK is well informed about Down syndrome. To learn about the support and information BGK offers, visit the website: www.bgk.org.au
Wednesday, 24 February 2010
ACHIEVING GOALS ACTIVELY

Down Syndrome Australia Network, AFL Foundation,and the 2010 AFL Umpires Roadshow present
ACHIEVING GOALS ACTIVELY - promoting the benefits of physical activity, healthy lifestyle and fun
Warm up and aerobic exercises, ball skills, stretching, Umpire skills
Free one-off sessions held nationally for all people with Down syndrome and their siblings. (School age & above)
NSW dates and locations for 2010
4pm to 5pm Mon 15 March
Gosford Area (details of exact location TBC)
4pm to 5pm Tue 16 March
Newcastle Area (details of exact location TBC)
4pm to 5pm Tue 16 March
Wagga Wagga, Maher Oval
To RSVP or for more info, please email priscilla@dsansw.org.au or phone 9841 4444
Early numeracy development: research at ACU Canberra
She is calling for expressions of interest from parents of primary school aged children, to participate in a study of the role of parent's in supporting their child with Down syndrome in the development of early mathematical concepts.
Dr Rhonda Faragher will supervise the project.
Contact info@dsansw.org.au for a response form, or contact Ms Shellshear directly, at Theresa.Shellshear@acu.edu.au or on 0437 867 628 for further information.
Art from the Heart - Newcastle
Artworks created during the workshops are now on public exhibition, and available for purchase:
24 February – 14 March 2010
Newcastle Art Space, 246 Parry Street
Newcastle West
Bookings: Brooke Cross – 0407 769 903
Tuesday, 23 February 2010
Down Syndrome Nutrition - a celebration and a sale, and Joan Medlen's blog

Facebook site incites hatred
Down Syndrome Australia today called on Facebook to immediately take down a site which advocates using children with Down syndrome as target practice and offer all people with Down syndrome and their families a formal apology.
Spokesperson for Down Syndrome Australia, Kirsten Deane, said the site was offensive and incited hatred of people with Down syndrome.
“Unfortunately this site represents the extreme end of the kind of prejudice and discrimination people with Down syndrome experience every day,” Ms Deane said.
“These kinds of attitudes have no place in contemporary Australia.
“We believe Facebook has some responsibility in continuing to host a group that is promoting not just hatred but acts of violence.
“People will want to laugh this off as a bit of a joke but it is no laughing matter for people with Down syndrome and their families. Reinforcing prejudice and negative attitudes just makes their lives that much harder every day.”
Ms Deane said that while the site had its origins in Italy, the global nature of communications and the international nature of Facebook meant its impact was still felt locally.
“This affects every person with Down syndrome and their families. The thinking behind it is the reason people with Down syndrome so often find difficult to find a place in the community.”
For more information please contact Catherine McAlpine on 0419 530 524
ABC News has published an international report about the reaction to the site in Italy:
Outrage over anti-Down syndrome site
Accessible Dance - new arrangements for 2010
Saturday, 20 February 2010
(NSW) Liberals offer hope to carers
The rights of the state's 750,000 carers would be enshrined in legislation for the first time if the Coalition wins office at the state election next year, forcing government agencies to give carers more help and support.
An act similar to a British law would legislate that government agencies undertake individual assessments of carers' physical and psychological needs and that government departments take carers' needs into account.
Click here for the full text of the SMH report.
Friday, 19 February 2010
Second UTS study on Participation in Sport: focus on females with disabilities
Participants in the research will be interviewed either in person, over the phone or through instant messaging via the internet. The interviews will run for no longer than one hour. These interviews need to take place before Friday 5 March 2010.
This research project has been approved by the UTS Human Research Ethics Committee and participants should be aware that all responses given in their interview are confidential.
For more information contact Ryan Sherry. Ph: 02 9514 5101 or email; ryan.sherry@uts.edu.au
For information on the first study, being conducted by the University of Technology Sydney for the Australian Sports Commission, announced recently, click here.
Thursday, 18 February 2010
Library Thursdays: Keys to Living Together & Planning for the future

Wednesday, 17 February 2010
Kids for Life "Enchanted Forest" Ball supports Down Syndrome NSW

As you enter our Enchanted Forest, you’ll be stepping into a world of glamour, entertainment and magic. Guests will experience exquisite food and wine, and fundraising fun for all.
There will be live and silent auctions, the always popular major raffle and a few other magical surprises, all hosted magnificently by the incomparable Adam Spencer.
Please join us and help raise much needed funds for our 2010 projects: the new Kids For Life Down Syndrome Resource Centre and the Kids For Life Sydney Children’s Hospital Epilepsy Program. Children affected with either Epilepsy or Down Syndrome across NSW desperately need a place to turn to, and all too often they’re not given access to the professional care and comfort they require. Kids For Life is committed to making a difference, and giving these kids and their families the respite they deserve.
So round up your friends, family and work colleagues, and buy your tickets today. As always, this will be a sell-out event.
We look forward to seeing you there,
The Team at Kids for Life
Date: Sat 27 March 2010, 6pm - 1am
Venue: Hordern Pavilion, Moore Park, Sydney
Dress: ‘Enchantingly’ in black tie
Tickets: $199 each, $1,990 table of ten
After: Kit & kaboodle from 1am
(free entry with ball ticket, transport from the Hordern provided)
RSVP: Fri 12 March 2010
Click here for further details and to purchase tickets
Click here to download a flyer that you can forward to friends
If for some reason you can’t make the night but would still like to help support our causes, simply head to our website to make a donation: www.kidsforlife.com.au
(Remember, all donations over $2 are tax deductible).
Click here for information about sponsorship opportunities
Saturday, 13 February 2010
NSW Guardianship Tribunal call for expressions of interest, part-time members
The NSW Guardianship Tribunal is established under the Guardianship Act 1987. Its members are appointed by the Governor.
The Tribunal’s role is to hear applications to appoint guardians and financial managers for individuals who, by virtue of a decision making disability, are unable to manage their person or their finances. The Tribunal may review enduring powers of attorney and the appointment of an enduring guardian. The Tribunal may also provide consents to medical treatment for people incapable of consenting for themselves. The Tribunal is constituted by panels consisting of between one and five members.
Expressions of interest are called for from prospective
- legal members
- professional members
- community members
Closing Date: Friday 26 February 2010.
Thursday, 11 February 2010
“Breaking Point” - Four Corners, 15th February at 8.30 pm on ABC TV.
This week on Four Corners, “Breaking Point”. The heart-rending story that tells what it’s like to live with a disability, or to care for someone who is disabled, in Australia today. Reporter Wendy Carlisle meets the families the nation has neglected.
The system of assistance for people with a disability in Australia is broken. Carers know it, charitable organisations know it and so do the governments. Now the federal government says something must be done. It’s holding an Inquiry, with the intention of creating a new and fairer system. It’s even considering a national disability insurance scheme. But will the system be reformed in time to save the families now at breaking point?
***********
In Sydney, 65 year old Dick Jones showers his profoundly disabled son Robbie. It’s a task he does willingly but at his age he doesn’t know how long he can keep giving his son the care he needs. He’s been told the only way to get more help would be to abandon his child and leave him in the care of the state.
Amanda Royle’s 9 year old daughter Rosie is deaf and blind, cannot speak, and is intellectually disabled. On her own with two other children to look after, Amanda is in desperate need of assistance that the system cannot provide.
The Nguyen family has twin boys with severe autism. At thirteen they are intellectually disabled and need to wear nappies. Three years ago one of the twins was given a place in a special school. For the family it was a god-send. Now the funds have dried up and the school is threatened with closure.
These families are desperate and they are not alone. Across Australia it’s estimated that there are 1.5 million people with a severe disability. Only a small proportion of them receive any direct physical care from government or charities. The vast majority rely on family and friends to help them survive.
“It doesn’t matter where you look across the sector, across the states of Australia, the system is broken.” Bruce Bonyhady, Independent Panel Member, Productivity Commission Inquiry into a National Disability Support Scheme
The reasons for this situation aren’t hard to find. Thirty years ago governments radically reformed the system of disability care in Australia. They promised to set people free from institutions, and at the same time they promised a major boost in funding so that people with disabilities could be supported to live at home or in community settings. Instead those services have been starved of funds leaving carers, many whom are now in their 60s, 70s, and 80s, to carry the burden. It’s a terrible situation as Dick Jones told Four Corners:
“We were told... the only option you have, is when you are in a wooden box , that’s probably the only time that Rob [his adult son] will get any accommodation.”
The Federal Government accepts the system needs reform and has begun to allocate extra funds for services and carers.
Most significantly, the Federal Government has set up a Productivity Commission Inquiry to recommend systematic reform and the establishment of a comprehensive National Disability Support Scheme. The problem is if the Inquiry recommends a new scheme and the Federal Government agrees to act, even the best estimates suggest real change in Australia would take five to seven years to implement.
“There’ll obviously I think be more meat on the bone for a scheme towards the end of a second term. When the scheme could finally be implemented, I don’t know.” Bill Shorten: Parliamentary Secretary for Disabilities.
For thousands of people this is simply too long to wait. Four Corners reveals the growing number of people who are packing their bags and going to live in countries where the support system is better resourced. These people are being called “disability refugees”. Reporter Wendy Carlisle goes with one young mother to Britain as she investigates the possibility of moving her family back there so her daughter could be better cared for.
While the Government recognises the need for fundamental reform, many families of the disabled are at ‘breaking point’.
BREAKING POINT goes to air on the 15th February at 8.30 pm on ABC1. It is repeated on the 16th February at 11.35pm.
It will also be available online. http://abc.net.au/4corners
A public online forum with some of the people from the story will follow the screening on Monday night starting at 9.30pm AEDST. An invitation is extended to all to join in.
Library Thursdays: Buses & Trains for everyone
Buses & Trains for everyone is a kit put together by Easter Seals in the US as a curriculum for teachers and paraprofessional to train students including those with disabilities to use public transport. Tuesday, 9 February 2010
Inquiry into provision of education
2 Twin Sisters blog
2 Twin Sisters is about ... well two twin sisters, one of whom has Down syndrome. The sisters are 58, and Elizabeth (Lizzie) also has Alzheimer's disease. She lives with her twin sister, Greek Diva who is her primary carer, and the blogger. She introduces their blog like this:
I have a story to tell. This blog will be about my journey through life with my twin sister Elizabeth who has Down Syndrome and now struggles with Dementia of the Alzheimer's Type common to Down Syndrome adults her age. My intent is to inform family and friends, educate others in similar situations, and learn to help myself as readers share posts and comments.
In and early post she says:
I have no desire whatsoever to appear a martyr in my efforts to provide the best possible life for Elizabeth, so we’ll skip the kudos. I am hoping someone out there will offer me encouragement and if you read something you have experienced, please share so I know I am not alone in all of this.
A break from blogging early in 2009 ended with this wry comment:
It’s been a long time since I have blogged about my sister and that is not because she hasn’t provided me with material.
Friday, 5 February 2010
Down Syndrome NSW events in Orange, NSW 11th - 13th March 2010
All events will held at
Orange Ex-Services Club
231 –243 Anson Street,
Orange
Registrations close 8th March 2010
Click here for a detailed flyer and registration form for all of the Orange events
All enquiries and registration: contact Siena O’Brien at carereducation@dsansw.org.au or phone 9841 4411
- Program -
"Update on Down syndrome"
This workshop will be relevant to professionals working to support people with Down syndrome in residential, respite, recreation and employment services, and to anyone who works closely with people who have Down syndrome, wishing to update their knowledge.
Workshop content: Communication, health and behaviour
Thursday 11th March 2010
9:30am - 3:00pm
Speaker:
Jill O'Connor, Down Syndrome NSW
Cost:
$99 per person (DS NSW members)
$132 per person (Non members)
Includes GST, Morning tea, light lunch
"Playing to Their Strengths"
A workshop for teachers and school personnel working with students who have Down syndrome
Information and resources from the latest research and practice
Friday 12th March 2010
9:30am - 3:00pm
Speakers:
Judy Davidson, Parent Support Manager, and Jill O’Connor, Down Syndrome NSW
Cost:
$99 per person (DS NSW members)
$132 per person (Non members)
"Communication and Behaviour"
A workshop for parents and family carers of a child with Down syndrome aged 5 - 12 yrs
Saturday 13th March 2010
10:00am - 3:00pm
Speaker:
Judy Davidson, Parent Support Manager, Down Syndrome NSW
Cost: $22 per person (adult siblings welcome at no charge)
Parents' seminars and workshops are funded by NSW Health, under the NSW Carers Program, and by Down Syndrome NSW, as a component of the “All the Way” project, 2007 – 2010
Click here for a detailed flyer and registration form for all of the Orange events
All enquiries and registration: contact Siena O’Brien on carereducation@dsansw.org.au or phone 9841 4411
Thursday, 4 February 2010
Library Thursdays: The Australian Gifts?
As previously mentioned, Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives (Kathryn Lynard Soper,ed., Woodbine House, 2007), is one of the most borrowed items in our library. We highly recommend this book to new parents as it covers a wide range of feelings that parents can relate to and the stories are positive. A few months ago, Gifts 2: How People with Down Syndrome Enrich the World (Kathryn L. Soper, ed., Woodbine House, 2009) was published. These stories are written not just by mothers but by a variety of people who have a relationship with a person with Down syndrome. Both are great books, but are written by Americans. A Melbourne Age journalist, Angela Blakston, who has a son with Down syndrome together with Carolyn McDiarmid, a midwife and mother, are asking for submissions (presumably from Australians) to compile a new book which has been given the working title "Now I See". Perhaps we will see an Australian version of Gifts later this year or next year. As with Gifts, profits/royalities will go to fund copies for new parents and health-care professionals.
On a side note, I'd like to mention a series of books that are not in our library but I came across in my summer leisure reading. They are by Colin Cotterill (who has an interesting website) and are about a coroner who solves crimes along with his nurse assistant and spirits (but that's another story). The reason I mention them is that one of the main characters who works in the morgue has Down syndrome. In the book I read, Disco for the Departed, he features prominantly in the book and is very well portrayed. They are available through most bookstores and may be in your local library.Wednesday, 3 February 2010
My Time Mosman: apply by 8th February
Who is My Time for?
It is for parents and/or carers of pre-schoolers, with a disability or chronic medical condition and their siblings.
What does My Time offer you?
My Time gives parents the chance to socialize and share ideas with others who understand the rewards and intensity of the caring role. Parents can meet with people in similar circumstances to have fun, hear from others and find out about available community support & research-based parenting information.
What is available for my children?
A play helper and volunteers will be provided to ensure that your children are kept entertained with activities such as singing/music therapy, drawing, playing games and various other activities.
Morning tea will be provided
When: 9.30 – 11.30 a.m. 15th February 2010, then every second Monday
Where: The Drill Hall, (end of), Cross Street Mosman. (Off Bradley’s Head Road)
To register before 8th February, please contact:
Adele Elliott, Group Facilitator,
Tel: 02-9975-8410 or e-mail aelliott@tscnsw.org.au
Australian research - Sport and Active Recreation: Disability Participation & Non Participation Study
From the University of Technology Sydney:
We would like to know whether or not you participate in sport and active recreation and the reasons for your participation. The findings will be used to review current approaches to sport and recreation and to improve access provisions.
To be part of a research study being conducted by the University of Technology Sydney for the Australian Sports Commission on the sport and active recreation of people with disabilities click on the link below:
https://www.surveymonkey.com/s/RVNQKWJ
Your participation in this study is highly valued whether you are participant or not. We are as interested in the reasons for non participation and the constraints to participation that people with disabilities face.
Those fully completing the questionnaire have the opportunity to go into a guessing competition to win 1 of 5 $600 vouchers for Inclusive Sport & Recreation Equipment. For further information on the equipment available, please visit http://www.teaching.com.au/
ALTERNATIVE FORMATS or FURTHER INFORMATION
If you require an alternative format (large print, E-text, Easy English) or would like to complete this questionnaire by phone or want further information, please contact the project manager: Ryan Sherry on (02) 9514 5101 or by email ryan.sherry@uts.edu.au
ETHICS
All responses are anonymous and confidential. The project has been approved by the UTS Human Research Ethics Committee (Ref No. 2009-242P) and any ethical issues arising from the research can be discussed with the UTS Research Ethics Manager, Ms Susanna Gorman, on Ph: 02 9514-1279.
Tuesday, 2 February 2010
The ordinary life of an extraordinary girl .....
http://downsyndrometeenager.blogspot.com/
is an interesting and thoughtful blog, started in mid 2009, and planned to finish in July 2010.
A permanent link is now in the blogroll in the right hand column here, or you can subscribe to make regular reading easier.
"Inspiring Communities" and "Moving Out" - Family Advocacy workshops
The presentations of the speakers during the In Control Forum held on Tuesday 24th of November 2009 are also available from the Family Advocacy website.
Monday, 1 February 2010
Lutanda's Camp David
Two adult holiday camps are currently scheduled for May and for September 2010 (at Yarramundi). Registrations for the May event close on 16th April.
Click here for a flyer.
For further details and registration forms, contact yarramundi@lutanda.com.au or phone 4776 1397, or visit www.lutanda.com.au
"Carecareers" is online ....
The website has been developed specifically for the not-for-profit disability and community care sector and should prove to be a great asset in addressing those harder to tackle candidate needs your organisation may have in the short to long term.
The service is part of the National Workforce Project initiated by National Disability Services and Ageing, Disability and Home Care (NSW Dept Human Services) and focused on attracting more talent to the disability and community care sector in NSW.
Here is a brief overview what carecareers.com.au has to offer you:
- Centralised job board to advertise your current career opportunities
- Talent pool to search for talent prior to paying to advertise a vacancy elsewhere – we hope to make that need a very rare one
- 1300 637 637 number for organisation and candidate support
- Talent Advisors to assist you in developing a best practice strategy to attract the “best fit” professionals
- Forums for professionals to discuss issues relevant to work in the sector
- Blogs providing an opportunity to exchange ideas with peers and industry champions
- FREE service until August 2010!
Contact: Ben Cox
carecareers
PO Box 601, Broadway 2007
ph 1300 637 637
email bencox@carecareers.com.au

