Address details


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


Thursday, 15 October 2009

Library Thursdays: Seeing is believing:Video self-modeling

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

Wednesday, 14 October 2009

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

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

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


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

Parliamentary Theatrette, NSW Parliament House,

Macquarie St, Sydney

RSVP: philippa@family-advocacy.com or (02) 9869 0866 by 17 November

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

Lunch will be provided.


Speakers:

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

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

Maureen McLeish Direct payment recipient on behalf of her daughter

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

Lara Friedman Person with disability using self managed package

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

Triple P: Positive Parenting Program - Bondi, November

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

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

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

RSVP by Monday 30 October

CONTACT: Paul Berchtold
PHONE: 9310 6300
EMAIL:
paul.berchtold@dadhc.nsw.gov.au or
Sunita.Misra@dadhc.nsw.gov.au

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

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

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

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

Triple P can help you:

- create a stable, supportive, harmonious family environment

- teach your children skills to get along with others

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

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

Tuesday, 13 October 2009

We loved Buddy Walk!

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

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

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

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

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

Monday, 12 October 2009

Buddy Walk - Australia, Sydney ....

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

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

We'll have photos soon!

Saturday, 10 October 2009

Karen Gaffney swims Boston Harbour to raise awareness


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

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

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

Friday, 9 October 2009

Scrapheap Adventure: Easter 2010

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


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

Then the 2010 Scrapheap Adventure is for you!

Raising money for Down Syndrome NSW

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

Rules:

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

Award/trophy voted by the attendees for:

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

EarlyEd 30th Anniversary celebration postponed

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

Thursday, 8 October 2009

Sydney kids in New York

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

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

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

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

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

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

Wednesday, 7 October 2009

Conference on siblings - Sydney, November

Centre for Developmental Disability Studies

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

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


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

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

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

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

Further Information: Margaret on (02) 8878 0500; E-mail: cdds@med.usyd.edu.au
[Closing date for registration: Thursday 12th November 2009]

Tuesday, 6 October 2009

Down Syndrome and dementia: information now online

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

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

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

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

Monday, 5 October 2009

Their merry dance still opens doors and warms hearts

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

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

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

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

Sunday, 4 October 2009

Support for National Disability Insurance Scheme

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

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

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

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

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

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

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

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

Raoef Mamedov photographic works

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

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

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

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

Saturday, 3 October 2009

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

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

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

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

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

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

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

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

Friday, 2 October 2009

Attitude TV

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

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




Thursday, 1 October 2009

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

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


Livewire Siblings

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


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

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

The Scene

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

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