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Scrapheap Adventure success The inaugural Scrapheap Adventure, held over Easter 2010 was a resounding success - a wonderful adventure in the outback, through floods and mud, a great welcome in Wanaaring and a terrific ride, that raised an extraordinary $20,000 for the work of Down Syndrome NSW from a generous band of sponsors and donors. We could not have asked for more. You can follow the 2010 Scrapheap Adventure from its first announcement to final triumph in our blog Our thanks and congratulations go to the organiser, Perry Gilsenan, the riders, supporters, and donors. Plans are already underway for the 2011 event. Contact Priscilla at Down Syndrome NSW for further information.

Parliamentary Inquiry into education for students with special needs The NSW General Purpose Standing Committee 2 has commenced its inquiry into the provision of education to students with a disability or special needs attending primary or secondary schools The terms of reference require the Committee to focus on what can be learned from international and federal approaches, and approaches in different States and Territories. The Parliamentary Committee’s web page indicates there have been over 720 submissions received, including one from Down Syndrome NSW. Down Syndrome NSW was invited to appear before the Committee at the public hearing on 10th May. Both the submission and the transcript of the hearing are available on the Inquiry’s web page, accessible from a link on our website: or call our office on 9841 4444 for a print copy.

The adventurers gathered at the Wanaaring Pub - Cassie Kelly accompanied her parents Rod and Fiona (right) and was a very able ambassador for people with Down syndrome throughout the weekend.

Fourth year medical students at the University of Western Sydney are about to begin a research and learning project about how sleep apnoea impacts families of children with Down syndrome and sleep apnoea. We know that the incidence of obstructive sleep apnoea is much higher amongst people with Down syndrome of all ages, and that it has wide reaching effects on the individual. Families also live with the effects every day, and the students will be talking with NSW families of school aged children. They hope to come up with strategies to encourage diagnosis and treatment in order to reduce the detrimental effects, and maximize management of sleep apnoea. We will also have a group of young medical practitioners that know a good deal about children with Down syndrome and their families. An invitation to participate is enclosed with this newsletter.

Alysha Buksh was born in Sydney and spent her early years here with her family, until they decided to return to Bali to live a couple of years ago. She is happily settled in school there. Aly’s Mum, Sophia is working hard with other families to establish a Bali branch of the Down Syndrome Association of Indonesia.

nsw news - winter 2010

How do families experience sleep apnoea in their children with Down syndrome?

A Supported Living Fund for NSW The discussion paper, A Supported Living Fund for NSW, is an initiative of Family Advocacy - you can download the document from the Family Advocacy website: or phone them on 9869 0866 for a print copy.

Food, friends, fun, families ....

While a very welcome increase in funding for supported accommodation has materialised in the last 3 - 4 years, families remain frustrated that mechanisms to allow people with disabilities and their families to have more control over and input into supporting them to live away from the family home has not been available.

...... All of equal importance in celebrating World Down Syndrome Day.

This discussion paper raises most of those issues and proposes a solution that is in line with what many families would welcome. Its release is timed to maximise interest in the lead-up to the State election, and follows recent publicity of the no-win situations that families have found themselves in when they can and wish to contribute to their son or daughter’s long term support outside of the existing ADHC controlled system of supported accommodation. It is important to note the distinction that this document, and other Family Advocacy initiatives draw between “supported accommodation” and “supported living”: Supported accommodation: services that provide a place to live with support attached in a single package, such as ADHC funded and/or operated group homes. Supported living: services or arrangements that provide the support you need to live where and with whom you choose. Note that this concept is separate from (although related to) concurrent campaigns for Self Directed Funding, and the campaign for a National Disability Insurance Scheme.

Narrabri and district families and friends celebrated World Down Syndrome Day at Narrabri Lake. A BBQ lunch was cooked to perfection by dads Ray and Alan and their assistants. Although the afternoon was very warm quoits, skittles, western croquet (circular course under a shady tree), bursts of basket ball (too energetic on a hot afternoon) and a great game of cricket were played. The cricket game terminated when Myles’ big hit was caught by a resting bird high in a tree. All had a great afternoon and the keen footballers were home in time for the 4pm telecast. A few family and friends were left to quietly yarn and enjoy the closing of the afternoon. Congratulations and thanks go to Maree the quoits queen; Carolyn, the croquet conqueror; Kim, the stretch and warm up trainer; Myles, up in the tree 6 and out; Chris, basket YES!!!!; Terry, bowler extraordinaire; Elizabeth, young and in everything; Trudi our old schoolmate who lives away but whose Mum came to catch up and their friends and families. Thanks to families and friends who all joined in with gusto befitting the no stress day. And thanks to Marion Pike for painting this delightful scene - a perfect way to mark World Down Syndrome Day.

Pensioner fee exemption for Photo Card

nsw news - winter 2010

The NSW RTA has announced that it will now exempt pensioners from the previously imposed fee of $44 for a Photo Card. The exemption is effective from 30th April 2010. Eligible pensioners who applied for ID Cards after December 17 and were charged the $44 can go into their local motor registry and apply for a refund. The NSW Photo Card is a voluntary identification card for people who do not hold a current NSW driver licence or other form of photo identification, to help them prove who they are. The Photo Card was introduced in December 2005 and replaced the proof of age card. Until now, there were no pensioner concessions for photo cards.

S Patrick’s College, St Sutherland S Mary Givney Clarke has organised a T4321 event at her school for some years - the food is prepared by the Yr 11 hospitality class, and the staff are invited by host, Sarah Clarke. This year Sarah was joined by baby Ava Bulmer, whose father, David, is also a teacher at the school. Mary says that the staff are very supportive, and becoming very well informed. They raised $320. A great result all round!

New in the Library Buses and Trains for Everyone and Public Transportation: A route to freedom Easter Seals, US, 2009. Curriculum, instructor training guide, worksheets, comic book and workbook for older children, CDs with file and video for teaching about US public transport travel. Could be used to create travel training programs in Australia. The Down syndrome transition handbook: charting your child’s course to adulthood Simons, Jo Ann, Woodbine House, 2010. Covers the transition from school to adulthood. Includes postsecondary options, housing options, training and employment, transportation, health care, financial issues. HOP: Hanging out program: interaction for people at risk of isolation Forster, Sheridan, CDDH Victoria, 2008. Suggested program for interacting with adults with severeprofound intellectual disabilities Keys to Living together: Life changing journeys. Helping to Build stronger, healthier relationships for couples with a young child with disability. FAHCSIA, 2010. Part of a series by the Australian federal government. Includes DVD and booklet to get couples talking about their feelings and making sure they take time for themselves and their other family members. Learners with Down syndrome: A handbook for teaching professionals Down Syndrome Victoria, 2009. Handbook for teachers to help them best teach children with Down syndrome in an inclusive setting. Provides teaching strategies as well as research based evidence. Making a case for life: A new definition of perfection Wincik, Stephanie, Girard, PA, USA: One Horse Press, 2009. Explores the myth of the perfect child and beliefs about the negative impact of having a child with Down syndrome. Memory of You! Reflection of Me! Suwannapha, Trinh (Pong), 2010. DVD, Duration: 20 min. Drama about a depressed woman with a grown son with Down syndrome. The narrator is Gerard O’Dwyer.

The New Social Story book Gray, Carol, Future Horizons, 2010. Tenth anniversary edition contains over 150 of the most requested social stories written by Carol Gray. Includes a ten-step tutorial on how to write your own stories. Peer support strategies for improving all students’ social lives and learning Carter, Erik W, Cushing, Lisa S., Kennedy, Craig H., Paul H. Brookes, 2009 Planning guide to setting up peer supports in high school. See and Sign Series: Transportation, Sports, Places to Go, Colours, Baby’s 1st Words Ryan, Aileen & Tara Hearne, 2010. More in See, Sign & Say series: Booklet containing colour photos and sign language graphics helping children communicate and learn. Social skills picture book for high school and beyond Baker, Jed, Future Horizons, 2006. Explains social skills via pictures and a few words for visual learners. Covers a variety of everyday occurrences mostly centred around school, conversation, friendships and even a story on job interviews. Stepping Stones: Triple P for families with a child who has a disability. Self help workbook. Sanders, M. & T.G. Mazzucchelli, 2009. Workbook for self managed Triple P behaviour management program. Take Heart: For families living with disability Hurley, Kate, Blue Bottle 2008. Australian book written by a Christian parent of a child with autism. It has stories from many parents of children with disabilities and each uses scripture to answer questions about disability. Only one has a child with Down syndrome but they all have a common interest in making sense of having a child with a disability and society. An annotated listing of the entire library collection is available from our website: Loans to members can be arranged by contacting our librarian, Kathi Beck: phone 9841 4410 or email or you are welcome to call in to out office to visit the library. Kathi is here on Tuesdays and Thursdays. Loans can be returned or collected on other days.

Congratulations !

Buddy Walk Wa - Australia, 2010 Sydney:

Sunday 24th October Sund Newcastle, Wollongong, Wagga Wagga dates are to be confirmed ...... stay tuned. Is your community planning a new Buddy Walk for 2010? Contact Priscilla at DS NSW 9841 4404 or

The Special Olympics National Games were held last month in Adelaide. Many of the athletes competing were people with Down syndrome. We congratulate them all on their participation and their achievements. Highlights from the games are available in online slide shows and videos from each day, on the Special Olympics Australia website. You might see one or two familiar faces in the slide show at the top of the games page too.

nsw news - winter 2010

Special Olympics National Games

Down Syndrome NSW Board 2009 - 2010 President Ken Hancock Vice-President Margot Elliffe Josiah Bamber is settling into high school, enrolled in a support class for students with hearing impairments - and his parents are settling into having a teenager.

Treasurer Karen Houghton Board Members Maha Daizli, Hannah Edwards, Joe Lawler, Jackie Little and Christopher Pollock (Board members can be contacted through the DS NSW office)

STAFF Executive Officer Stephen Clarke Parent Support Judy Davidson - Manager M/W Lynn Bailey Tu/F Miriam Parker - Parent/Carer Support W/F Mary Thompson Sebastian Britos had his dancing shoes on at the Special Children’s Christmas Party

Information Services Maria Short - Information; Up, Up & Away Project M/Tu/W Kathi Beck - Librarian Tu/Th Edme Steirn - Volunteer Helen Haigh - All the Way Project Coordindator M/Tu Siena O’Brien - Carer Education Coordinator M/Tu/W Michelle Bamber - Clerical Assistant Tu Jill O’Connor - Publications Editor Up Club Coordinator Brooke Jones M/W/Th Finance & Business Administration Angela Adams - Manager Nidi Shakarian - Clerical Assistant Tu/Th Marketing & Fundraising

Owen Dell loved his first chocolatey Easter, after celebrating his first birthday on World Down Syndrome Day 2010

Priscilla Leong - Coordinator

nsw news - winter 2010

Down Syndrome NSW, 80 Weston Street (PO Box 9117), Harris Park NSW 2150 P. 9841 4444 F. 9841 4400 Who’s having the most fun/feeling the greatest fear on this ride - Christian Ridey or his brother James?

DS NSW News  

An 8 page news supplement from DS NSW