Young Carers - newsletter, events, activities and support

Young Carer News, February 2010 has lots of very useful information about activities, and camps planned to support young people contributing to the care of a family member with a chronic illness, mental health concern, or a disability.

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

Free online events about current research from DownsEd

Kathi road tested Down Syndrome Educational International's new program of "webinars" earlier this week, and reported that they more than lived up to our high expectations. Now there is a wonderful opportunity to find out about current research into aspects of Down syndrome - a very exciting initiative, just in from Down Syndrome Education International:

Find out more about our research at free online events
We 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

What does Self Directed Planning, Funding and Support mean for people with high and complex needs?

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

WROK is the acronym for Wheelchairs Rule OK - but read on, it is open to teenagers and children with intellectual disabilities too, and they have asked us to tell our families about them!

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

Dance Like Nobody's Watching: film screening, Sydney 22nd March

Dance Like Nobody's Watching is a new Australian film directed by Liz Collins, starring Paul Matley.

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

Flyer

Screening for World Down Syndrome Day
(proceeds to Down Syndrome NSW)

Cricket Carnival Day: 13th March, Queens Park

Cricket NSW is conducting a carnival day for people/teams of people with a physical or intellectual disability. There will be two divisions for teams of a maximum of 10 to participate in. There are no prerequisites and people of all ages are welcome to join in the fun of these 10 over a side matches.

SATURDAY 13th MARCH, 2010
11am to 3pm

Registrations required in advance – they will NOT be accepted on the day. Must be received by 4th March.

Queens Park cricket fields 20 and 23, Darley Rd, Queens Park
Parking – available in Darley Rd – 4 hour parking limit

$30 per person and all equipment supplied (bring your own if you wish!)

Click here to download a flyer a registration form.

Contact Donna at Cricket NSW with any enquiries:

donna.little@cricketnsw.com.au
Ph. 02 8302 6033
Mob. 0400 431 776

Get Active with Rugby League - Inclusive Rugby League Program

The Western Sydney Rugby League Academy invites you to join the Inclusive Rugby League program, aimed at increasing the levels of participation in sport, recreation and physical activity for people with disabilities.

The program will focus on training in the following areas:

• Team Trainer
• Team Manager
• Gear Steward

Merrylands Oval, Merrylands Road
Friday 26th March 2010, 5.30pm - 7pm

For a nomination form, contact: John Wilson
Phone: (02) 4725 6000 Email: john.w@nswrlwsa.com.au

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.

The webinars consist of a presenter (Sue Buckley, Julie Hughes, Gillian Bird are a few) who delivers the presentation via a video link into your web browser. Slides are shown alongside a box with the speaker speaking. There are notes that can be downloaded before the presentation and the session is recorded and will be available for participants to view later. There is time for questions and a place to type those in as the speaker speaks so that you don't have to remember later what it was you wanted to ask.

In the session I attended (What does research tell us about the specific learning needs of children with Down syndrome (5 to 11 years)?) the talk was for approximately an hour and there was half an hour for questions. It is a bit different asking questions over the computer rather than in a conference room. In a way, it is easier to just type in a question rather than have to stand up in front of everyone, but it is also harder as you are typing while you are listening and can't easily reform your question or follow up something said while you were typing. Also, it may have been the lack of my experience setting up my session, but I couldn't see the questions that others were asking or the question that the presenter (Sue Buckley in this case) was answering although usually she made that clear.

To sign up for the seminars, you can either choose an entire course (a session a week for 10 weeks) or single seminars. There is a 20% discount if you sign up before the end of Feb. This works out to be GBP24.00 or $US40.00 for each seminar session and a further discount if you sign up for the entire course. This block of seminars is scheduled at 9:00am GMT which is 8:00pm Australian Eastern Daylight Time. You can choose courses for early childhood (0-5 years), childhood (5-11 years) and speech and language. The weekly seminars that make up each course can be purchased individually. Topics range from specific learning needs, speech/language & communication, reading, number skills, social development and behaviour plus more. There are plans for these seminars to be held again in April and May at 5:00pm AEST although these cannot yet be purchased.

I found attending the web seminar to be excellent. Setting up was very well explained and the technology was well done. The video and sound quality were good and there was provision for staff to troubleshoot any problems I may have had. There is also an option to listen to the seminar by phone if you do not have the capabilities for video. There is a provision for video and microphone input from the audience but this was not used. I am looking forward to attending more seminars and I would highly recommend it to anyone interested.

Technical requirements for web seminars

Down Syndrome Education International is also putting out videos of conferences which will be in the library in the next month. This will most likely be the same talks, however the web seminars give an excellent chance to ask questions of the experts.

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

15 new providers of outside school hours activities for teenagers with disability nationally, were announced in December.

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

The Bowel Group for Kids is a registered, Australian based charity dedicated to providing emotional support to families of children born with Hirschsprung’s disease, imperforate anus/ano-rectal malformations and associated conditions.

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

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

Theresa Shellshear lectures in mathematics education at the Australian Catholic University, 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

Throughout the past year, over 100 people with disability have participated in art workshops at Newcastle Community Art Centre through Art from the Heart.

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

Down Syndrome Nutrition - a celebration and a sale, and Joan Medlen's blog

Joan Medlen is the internationally known and respected author of The Down Syndrome Nutrition Handbook, and a renowned communicator, teacher and publisher. And now she's the mother of two young men, celebrating her youngest, Andy's 21st birthday this week. To mark the event, here website, Down Syndrome Nutrition is offering a sale of her excellent resources, until 30th March.

Joan has also amalgamated her blogs into a single site, Practical Wisdom - Phronesis, where she writes with great good sense about diet, nutrition, food, communication, health literacy, and sometimes about family and friends. Her latest post is about the risks of using food as rewards, and safer options. We've added to our blogroll at right.

Facebook site incites hatred

Down Syndrome Australia, 22 February 2010:

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

Sydney Dance Company has offered an accessible dance class in the city for some years. It is popular, and we know that many people with Down syndrome have enjoyed it, and continue to do so. The class is continuing, but with a new teacher and administration. Details are provided by Accessible Arts here.

(NSW) Liberals offer hope to carers

Andrew Clennell, reports in today's Sydney Morning Herald, on a recent policy release by the NSW State Opposition:

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.

Second UTS study on Participation in Sport: focus on females with disabilities

The University of Technology Sydney (UTS), together with the Australian Paralympic Committee, is undertaking a research project to better understand the reasons females with disability have for participation and non participation in sport.

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.

Library Thursdays: Keys to Living Together & Planning for the future

The Australian Government (Department of Families, Housing, Community Services and Indigenous Affairs - FaHCSIA) has put out a series of booklets and DVDs called Keys to living together. One of these is Life-changing journeys: Helping to build stronger, healthier relationships for couples with a young child with disability. It includes things to think about and discuss with your partner to work through feelings you may have about having a child with a disability. It also talks about the importance of building supports, having respite and looking after yourself. The booklet looks useful for working through these things. The DVD is a bit cheesy but I can see it being used in workshops as discussion starters. The booklet can be downloaded here. The Life-changing journeys DVD and booklet can be borrowed from the library.

Also from FaHCSIA:

Planning for the future

Special Disability Trusts: getting things sorted

Both of these publications are available in English, Arabic, Chinese, Croatian, Farsi, Greek, Indonesian, Italian, Korean, Maltese, Serbian, Spanish, Turkish, and Vietnamese. These can be downloaded from the web or borrowed from our library.

FaHCSIA also offers a Family Relationship Service for families which provides mediation and counselling for families to help plan for the future for their family member with a disability.

If you'd like to borrow any of these items or anything else from the library, just email.