July 2012
July e-update DS NSW

Welcome to our second winter edition!

In This Issue

Thank you Richard Wilkins
Let The Journey Begin
Recent funding announcements
Research opportunity
11th World Down Syndrome Congress
NDSC - live streaming
The Odyssey
The power of roles
Relax and Unwind
Food preparation Classes
Come try Zumba
Illawarra Disability Options Expo
Speech pathology services
Using iPads in education
Enabled learning
Reading at home with your child
Blog post
Book review
Spark Creative Arts Festival


Board Update


Dear Member,


On behalf of the DS NSW Board I would like to give you an update of your Association.


Recently, through a majority vote we decided to re-structure the organisation with a view to returning to a multi-core value of support, advocacy and fundraising. To assist us through this transitional period we have appointed Scott Bridges & Judy Davidson to a joint management role.


We are making specific plans to enhance the organisation and we shall share these plans once they are in a position to go to active. Please be assured however that no decisions have been made from a stand-alone point, but rather they have been discussed and processed by all Board members.


Furthermore as with any organisation, profit or not for profit, we know we must always must keep our focus on communicating any changes. I would like to apologise to any member who has felt left out, or in the dark, however I must also emphasise that what we as a Board have been through has been no easy task and at times has been a very delicate process.


With the current Board I feel we have a strong mix of social, business and family representatives and along with Scott and Judy I believe we can make DS NSW a benchmark for our cause.


I would also like to take this opportunity to thank all staff, volunteers for the professionalism and courtesy they have shown through this ongoing transition period. Finally, I would like to thank you for your support and we look forward to keeping you informed of the way ahead with DS NSW.


Kind regards,


Stephen Ricardo


Thank you Richard Wilkins

DS NSW would like to thank Richard Wilkins and Channel 9 for such a spectacular evening gala event on June 16. Congratulations to Richard on his 25 years with Channel 9 and an especially big thank you to Adam his son, and the Up Clubbers who helped make the night such a success. With Seal, Nicole Kidman, Keith Urban and Delta Goodrem in attendance everyone enjoyed themselves immensely and all funds raised will go to DS NSW.


As a part of the good news stories generated from this great event Adam Wilkins featured in Woman's Day magazine, under the headline Richard Wilkins: meet my amazing son. An extract from the article is online here, and check out the fabulous photo accompanying it for the striking family likeness.


Let The Journey Begin

At Parliament House in Sydney on July 3, 2012 the Minister Andrew Constance formally launched the ILSI documentary Let the Journey Begin.


It was a very special evening for both ILSI participants and ILSI team members as the film directed by Genevieve Clay played to a packed house. The film explores the lives of three individuals and their families as they progress through the Independent Living Support Initiative (ILSI) program over the course of nine months.  


What is ILSI? ILSI is an innovative program designed and developed by DS NSW in conjunction with service providers and ADHC to help people living with a disability live a more independent life. Throughout the documentary we watch Sophie, Jane and Leigh gain valuable living skills, set goals, dream big and gain more confidence. 


Why is there a documentary? The documentary is designed to show facilitators and potential participants and their families what to expect if they choose to enter into a transitional program such as ILSI.


You can watch it online here at vimeo for free!

Recent funding announcements

NSW Ageing, Disability and Home Care has recently announced: 

Research opportunity

The University of Sydney is conducting research into the use of inhalers by people with an intellectual disability. Australian data show that 15% of people with intellectual disability have asthma, and our recent study showed that inhalers are being prescribed. In both residential care settings and the family home, assistance is often provided to people with intellectual disability to take medication.


We are seeking to interview family caregivers and disability support workers who have recently cared for a person with intellectual disabilities who has asthma or uses inhalers. We hope to gain an understanding of carers’ knowledge and training with regard to respiratory medications, as well as any challenges involved.


Please contact Sharon Davis on 02 91145119 or 0411 817 299 for more information

11th World Down Syndrome Congress




When: 15 -17 August 2012 


Where: For the first time on African soil, the 11th WDSC will take place in the beautiful city of Cape Town, South Africa at the Cape Town International Convention Centre (CTICC). 



Sheri Brynard - Hopes & challenges of living with Down syndrome
Sheri is the only learner with Down syndrome who has passed a National Technical College Diploma in South Africa, without having been granted any concessions. Sheri has a full life, working, motivating, travelling and most importantly she changes perceptions of people with Down syndrome. She is proud to be who she is, a girl with Down syndrome!

Christy Lynch - Employment - the time is now!
Christy is nationally and internationally recognised for his pioneering work in achieving integrated employment for individuals with a disability.

Roy McConkey - Self Actualisation of Persons with Down Syndrome - An International Perspective
Roy is Professor of Developmental Disabilities at the University of Ulster, Northern Ireland. 


Plus many more exciting speakers. Check out the programme on the website 



NDSC - live streaming

The program for the (US) National Down Syndrome Congress's 40th annual convention, to be held this month in Washington, is replete with sessions and speakers that will attract more than 2000 delegates. While it would be a wonderful experience to attend in person, most of us in Australia will not have that opportunity, but the wonders of the internet will now give us online access to a selection from the program, either live-streamed (if the time-zones work for us) or as recordings available to access until 1 June 2013. We have checked out the online registration/payment process for users from Australia, and it worked first time.

When: July 20-22, 2012

For the first time in Convention history, NDSC is live streaming 17 workshops and sessions from the Annual Convention in Washington, D.C. Share the experience of “the world’s largest family reunion” and learn the latest developments and advancements from the Down syndrome community’s leading voices.


Unlimited access to select workshops is available during the Convention and until June 1, 2013.


Convention programs scheduled for broadcast and recording: click here.

Cost: NDSC Member - $35 (membership will be verified)
Non-NDSC Member - $70 (this includes one year NDSC membership)


Register and pay online at: NDSC Convention website

The Odyssey

Family Advocacy’s Odyssey is back: celebrating achievements, progress and change


When: 9 and 10 August 2012


Why: The Odyssey will continue and build momentum.

Click here for more information.


The power of roles

Resourcing Families is hosting a one-day workshop for families, presented by international speaker, Darcy Elks.


Making The Vision Reality: The Power of Roles

It is important to have a positive vision for the future of your family member and the meaningful life they can lead but there need to be some practical strategies towards making it happen. In this practical workshop, Darcy Elks will share how valued social roles can assist people with disability to have active, positive and contributing lives in their communities.


When: Wednesday 18 July, 9.30 am - 2.30 pm.

Where: Hornsby

Cost: $20


Call Resourcing Families to find out more or discuss if this workshop is relevant to you – 9869 7753 or 1800 774 764 (for callers outside Sydney).

Relax and Unwind

This is a 10 session course delivered by a qualified Fitness Instructor for all carers living in the St George area!


When: Thursdays 19 July – 20 September, 2012.

Where: Pole Depot Community Centre, 23 St Georges Rd, Penshurst.

Cost: Free


Contact: Cares Support Team on 9580 0688


Food preparation Classes

Exceptional Parents Australia is a local group (in northern Sydney-Chatswood area) of parents of young adults with a disability. They are starting food preparation /cooking classes to be held at Chatswood in a purpose built kitchen, run by professional teachers. Cost should only be the ingredients. Numbers are needed to start ... anyone interested can post a message on Exceptional Parents Facebook page or contact Louise Gaegan at Willoughby City Council, ph 9777 1000 or Louise.Geaghan@willoughby.nsw.gov.au

Come try Zumba

When: Monday 9, 16, 23 July 2012

Where: Armidale, NSW

Description: Come Try a Sport a Month is an opportunity for people with a disability to try a new sport in a welcoming and fun environment.

Zumba is a Latin dance-inspired fitness program. The exercises include music with both fast and slow rhythms, as well as resistance training. The music comes from many different dance styles including: hip hop music, salsa, belly dancing, and tango. Cost - $10 for the whole program

The Zumba program is low-impact which makes it is safe for all types of people. Classes are specifically designed to the participant’s needs, aiming to help build strength, flexibility, and posture. After the trial month if the participant would like to get involved in the sport regularly Sport and Recreation will help integrate them into a local body. This is a great opportunity to trial a new sport and get physically active. Wear sensible clothing for dancing. If participant usually has a carer they must attend as well.

Contact: Sam Eriksson Phone: (02) 6766 1200

Website: Come Try Zumba

Illawarra Disability Options Expo

Illawarra Disability Options Expo.

This year marks the 20th annual Illawarra Disability Options (IDO) Expo - an invaluable resource for people of the Illawarra.
IDO is a professional network of key disability providers whose vision is to improve options for people with a disability.
The Expo provides a 'one-stop-shop' for the community, and the chance to speak with representatives of various services, including information on education, employment, respite, transport, advocacy and much more.
When: 8 August 2012, 10:30 AM to 1:00 PM
Where: Illawarra Master Builders Club, Church Street, Wollongong

Merryl Bennet on (02) 4229 1922 or Annick Leach on (02) 4227 3111

Speech pathology services

Expressions of interest are sought for ‘It Takes Two To Talk’ 2012 – 2013.


Corinna Hassett a Hanen certified speech pathologist registered with Better Start FaHCSIA funding and parent of a teenager with Down syndrome is looking to run a Hanen Parent Training Course using the ‘It Takes Two to Talk’ program in the Central Coast area. 


The cost for attending 8 group parent training sessions plus 3-4 video feedback sessions is $1500. Will consider individual families if the need arises. Will look at venues on the Peninsula, at Niagara Park and Wyong areas depending on demand.


If you are interested please contact Corina Hassett on 0409 923 814 or email hassett5@optusnet.com.au 

Using iPads in education

The Educational Resources page on the website of the Down Syndrome Research Foundation (based in Vancouver) includes copies of the presenter's notes from three presentations on technology and speech therapy. Each includes the differentiation between '... using the iPad to aid speech output and using it to learn new speech, language and literacy concepts', and focusses mainly on the latter use.

Enabled learning

DSA Queensland has published a book, Enabled Learning  - Educating a Student with Down syndrome in a Primary School Environment.


The book aims to provide guidance for educators working with students with Down syndrome. It combines information, insights, research, practical strategies and ideas to help you expand your understanding and provide you with tools, ideas and resources that you can incorporate into your own educational context. It is our hope that this guide will inspire you to revolutionise the way you work with students with Down syndrome in order to maximise their educational outcomes.


It is now available for purchase

Reading at home with your child

A workshop advertised in the Learning Links 2012 Workshops Calendar:


A free workshop, presented by Sarah Axford, for parents only.
Reading at home is important to help children develop their skills and confidence. Sometimes parents lack the confidence to help their child read at home. This workshop is for parents of children in lower primary school who would like strategies in how to approach reading with their child at home.

When: Monday 30 July 6.00pm - 8.30pm
Where: Penshurst 

This workshop is funded by the Department of Education and Communities

For registration details for this event, and for the full calendar of events for professionals, schools, parents and carers, download the 2012 Learning Links Workshop Calendar

Blog post

Stop seeing intellectually disabled adults as children


By Bruce Burris Published: June 25, 2012


Poor Blanche DuBois. Tennessee Williams' perpetually dependent anti-heroine's most renowned declaration, "I have always relied on the kindness of strangers," was employed in a column by political pundit George Will. Will, the loving father of an adult with Down syndrome, referenced this venerable line as an example of the form of eternal childlike dependence on others that many (including Will) still believe adults with intellectual disabilities must employ if they are to make their way in the world. Read more here

Book review

A brilliant review of Barnaby Rudge By Charles Dickens by Shannon Buck 

How do you portray a ‘character’ with Down syndrome? What choices are there when it comes to representing the lived experience of intellectual disability? Novelists have grappled with these issues over hundreds of years. This review of the novel Barnaby Rudge about how Charles Dickens dealt with the subject of intellectual disability is definitely worth reading!

Spark Creative Arts Festival

Junction Works will again host the  Spark Creative Arts Festival


When: 24th ~ 26th October 2012 


Where: The Tops Conference Centre Bendena Garden Rd, Stanwell Tops


From the Spark Festival brochure:

The Spark Creative Arts Festival is a festival of the arts for people living with a disability.  In its ninth year the Sparks Festival is set to go off like a cracker and what better way than with this years theme of the year of the Dragon… but wait there’s a more we’ve added a twist of the rainbow serpent too. With 9 workshops, heaps of entertainment expect the Sparks to fly ... get ready to ignite what’s possible. This festival is designed to allow people with a disability the chance to find their voice through the creative outlets of music, dance, art and performance.  In a positive and safe environment, people with a disability can come together to share their stories, interests and ideas and be given the opportunity to share their experiences.


Full details, brochure and registration options are available on the JunctionWorks website now.