Address details

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

Friday, 30 March 2012

Scrapheap Adventure Ride 2012 - are we there yet?

Honestly, we don't really know what a lot of the lyrical waxing about bikes means over at Scrapheap Adventure Ride headquarters ... but we do know about dedication, support and the spirit of adventure, so it looks good!

Mick Debreceny's NX

Here a just a few highlights of the preparations ....some riders have been for a 'practice' - just down to Tumbarumba and back, by 4WD to check the route!  This third ride will be some adventure next weekend - arrival day at Mt Kosciuszko is Easter Saturday, 7th April 2012.

Andrew Meddings has made room for his wheelchair on the back of his bike

Mick's daughter had her own homemade rocky road stall at a local Farmers' Market to support her Dad's adventure!

Grant Knowles and the kids at Kanahooka High have featured in the local press, reaching out into their community.

This third time entry (100% participation) is known as the Scare Chair!

... and this is the Side Car Scrapper, that apparently needed some 'fettling' ...

Major supporters, Pilot Air, showcased Perry's bike at their stand at the Buson Auto Parts Trade Show and collected some more donations.

Our heartfelt thanks to each and every rider, sponsor, donor, support team member  - all who have joined in this wonderful Adventure for 2012.

Check in to the Scrapheap Adventure Ride here for more photos (especially of the bikes), and to follow the ride.  To sponsor a team or rider, or to donate, click here.

Thursday, 29 March 2012

Library Thursday: a new e-book, 2 really useful newsletters

Anne Kelleher's second book written specifically with adults with Down syndrome (like her brother) in mind, When David was surprised, is now available for Kindle, and will be available in print soon.

School-Link Newsletter (on children and adolescents with both intellectual disabilities and mental illness), the March 2012 issue is now available online.  It is published by the School-Link partnership between the Children's Hospital at Westmead and the NSW Dept Education and Communities. Content in this issue includes:
  • Mental Health Problems: Disorders of Social Development caused by Maladaptations of ‘Theory of Mind’? A Developmental Psychiatry View, by Associate Professor David Dossetor 
  • A focus on Fragile X Syndrome 
  • Conference Review: Translating Genetics to Phenotype: the Society for the Study for Behavioural Phenotypes Research Symposium, Brisbane 
  • Justice Health School-Link Initiative: supporting young offenders get back on track through education, by Kim Eisler 
  • Transcribe 2011 Young writers entry: Some Miracles Work, by Vivian Tran 
  • Siblings Australia resources, by Barbara Fleming 
  • The Medicine Cabinet: Obesity- Problem of number and size, by Judy Longworth 

Your Voice, Your Choice (The Disability Trust, South Eastern NSW)
Your Voice, Your Choice is a free monthly newsletter from The Disability Trust. It covers topics for people with disabilities, in South East NSW, at a local, state and national level.  It is packed with news from the NDIS, carer news, community college courses for adults, to a Saturday dance class for people with intellectual disabilities in Nowra - loads of really useful information. It comes out on the second Monday of each month. Archives of newsletters, including the latest issue (March 2012)  are available here, or you can subscribe here to receive your own copy by email.

How People with Disability and Their families are Building Better Communities

Facilitated by John O'Brien and Connie Lyle O'Brien (USA) for Pathways to Leadership

People with intellectual disabilities and their families make contributions to community life that most experts never predicted. Their achievements have led to changes in policies and laws. But most still face a hard road to take their rightful place as respected, well-supported participants in schools, places of work and leisure, and civic and political life.

In this time together, we’ll explore some lessons from the stories of people and families who are making a positive difference in their communities.

10am – 3pm, Thursday 19 April 2012 
Parliament House Theaterette 
Macquarie St, Sydney

Registration: $15 per person.

Links to brochure and registration.

Wednesday, 28 March 2012

NSW Dept Education and Communities: more details on funding reforms announced yesterday

More details about the reforms announced yesterday for funding to support students with disabilities have now been posted by the NSW Department of Education and Communities, under the title Every Student, Every School.  Included is a link to a booklet containing all of the documents in one place, at the top of the right hand column on this web page.

The reforms will be particularly relevant for students with Down syndrome who are classified as having 'mild' intellectual disability, and have frequently not had access to appropriate support because they did qualify for a confirmation of disability with DEC.

This page of Frequently Asked Questions also addresses concerns families might have about how the reforms will impact on students who currently do have individual funding for support in NSW public schools, or who will qualify for it in future.

Hidden in plain sight ... Ellen Fanning on the need for a NDIS

Hidden in plain sight is an excellent two part article about the need for a National Disability Insurance Scheme in Australia - it is wide ranging, well written and includes interviews with families, the Every Australian Counts campaign director, John Della Bosca,  Kirsten Deane (Executive Director of the National Disability and Carers Alliance) and actuary John Walsh who has lived with a physical disability for more than 40 years.  Written by Ellen Fanning, and published online by The Global Mail:

Tuesday, 27 March 2012

Funding to support NSW students with a disability: DEC news release

27 March 2012

More than 100,000 NSW school students with a disability will have greater access to classroom support and specialised equipment following a $63 million funding injection from the Commonwealth Government.

New South Wales public schools, which educate more than 90,000 students with a disability, will receive $47.9 million over the next two years, while Catholic and independent schools will receive $11.3 million and $3.8 million respectively.

Minister for Education, Adrian Piccoli, said the Commonwealth More Support for Students with Disabilities funding would feed into the NSW Government's initiative Every Student, Every School.

... read the full Department of Education and Communities news release here.

Media reports on the announcement and responses:

New Funding System for disabled pupils welcomed, Sydney Morning Herald, Anna Patty, 27th March 2012 

Critics fear new disabled student funding model, ABC News online, 27th March 2012

Teacher aides safe in disability reforms, Nine News online, 27th March 2012

Special education changes are a cost cutting exercise, NSW Teachers Federation, 27th March 2012 

Fears for disabled students as funding overhauled, Sydney Morning Herald, Anna Patty, 28th March 2012

Living Life My Way: final ADHC consultations across NSW

The NSW Government is leading a series of extensive consultations on the best way to implement person centred supports and individualised funding arrangements.

These consultations commenced in July 2011 with the Living Life My Way summit. Between August and December 2011, nearly 200 consultation sessions were held across NSW, with more than 3,000 people participating.
The final consultation stage will be launched at a one-day event on Tuesday 24 April 2012 at Allphones (formerly Acer) Arena. 
Consultations will be held across NSW between 7 May and 29 June 2012
Separate sessions are scheduled for people with disabilities and their carers, and for service providers and advocates. These consultations will be independently facilitated. 
Dates and venues for consultations across NSW are available here.
Source: ADHC website

Monday, 26 March 2012

2 online surveys and a petition

Also from the latest issue of IDEAS e-News (Issue 6, published 23rd March) available online here, these online  opportunities to contribute to research and to lobby the Australian Government:

Inclusive Community Education Program: for people with intellectual disabilities

The latest issue of IDEAS e-News (Issue 6, published 23rd March) is available online here, and includes information about a range of activities available to people with intellectual disabilities who live in the inner west, south and east of Sydney :

Inclusive Community Education Program (ICEP)

What is ICEP?
A flexible respite program funded by Family and Community Services, Aging, Disability and Home Care
  • Fun and free short courses for adults with an intellectual disability
  • A chance to hang out with new people and make friends
Term2 activities currently on offer (starting during April):

  • Organic Gardening and Cooking 
  • Visual Arts
  • Dance and Games
  • Fun Fitness
Full details of content, times and dates for each activity are available from IDEAS e-News

Who can come?
Adults (18+) with a primary intellectual disability who live at home with their parent or carer
Those living in one of the following local government areas - Ashfield, Botany Bay, Burwood, Canada Bay, Canterbury, City of Sydney, Leichhardt, Marrickville, Randwick, Rockdale, Strathfield, Waverly or Woollahra

Where are the courses?
The Sydney Community College: 2A Gordon St, Rozelle
The Sydney Centre for Tennis: 33 Mallet St, Camperdown
Note that both college sites are easily accessible by public transport

How do you enrol?
Contact Duncan Rose
Ph: 8752 7571
ICEP web page is part of Sydney Community College's website.

Saturday, 24 March 2012

A little music to brighten your day ...

... guitarist Ricardo Colomo, performing last week at the Annual Conference of the Massachusetts Down Syndrome Congress, with his father and teacher, Cesar Coloma:

(Thanks to the Adult Down Syndrome Clinic for the link)

Friday, 23 March 2012

World Down Syndrome Day acknowledged in the Australian Parliament

Justine Elliot, MP for Richmond spoke in the Australian Parliament on Wednesday, to acknowledge World Down Syndrome Day, and her relationship with a constituent who has Down syndrome, Shona Robertson, who was also one of the international speakers at the UN conference in New York this week.

Ms Elliot's speech can be read here, in the Hansard proof from Wednesday 21st March 2012.

The National Down Syndrome Society in New York has released several photos from the UN event, here in their Facebook album, including one of Jason Kingsley and his mother Emily Perle Kingsley, who wrote Welcome to Holland.

Disability 101: Foundations for Enabling the Church workshop, 3 April

You are invited to the first opportunity to experience a brand new workshop, presented by Luke 14 / CBM:

Disability 101: Foundations for Enabling the Church

Disability is part of every community, and God calls his church to welcome and include all. As churches respond to this call, they find the outcome of richer community life benefits everyone. This workshop practically assists churches to grow as places of acceptance, reflecting God’s inclusive love.

Topics covered:
What is Disability?
Disability in Australia
Christian Perspectives
Language & Etiquette

The workshop will be held:
9:30am to 1:00pm on Tuesday 3 April 2012
St Clement’s Anglican, 144 Raglan St, Mosman NSW

To register:
Call Rob Nicholls on 1800 678 069 or email
Cost will be $15 for materials and morning tea and it will be possible to pay on the day by cash or credit card. 

Thursday, 22 March 2012

Library Thursday: for World Down Syndrome Day

It's still 21st March in some parts of the world, so the celebrations continue.

Amy Baskin's review of Down Syndrome Parenting 101 by Natalie Hale was published by yesterday/today.  She highlights Natalie Hale's advice to see the individual:

 ... Look around you at the general population. What you see there is what you’ll see in Down syndrome: from brazen to shy, hilarious to serious, handsome to plain, social to solitary.
Read the whole review here.

DS NSW members can borrow Down Syndrome Parenting 101 from our library.

UN conference webcast
The United Nations conference for World Down Syndrome Day, Building Our Future,  which closed just a few hours ago, is now available for viewing on the UN Multimedia channel.

Discount on Monica and David DVD 
In honour of World Down Syndrome Day, the DVD Monica and David (Educational Edition, which includes extra material) is discounted by 50% until April 21, to $100 - a very significant saving. Click here to order online

DS NSW members can borrow Monica and David from our library 

Wednesday, 21 March 2012

On World Down Syndrome Day, Secretary-General Urges ‘Inclusive Society For All’, Reaffirms UN Treaty on Rights of Persons with Disabilities

Following is UN Secretary-General Ban Ki-moon’s message on World Down Syndrome Day, to be commemorated on 21 March 2012:

Today marks the first commemoration of World Down Syndrome Day. I congratulate the global partnership of Governments, activists, families, professionals and others that worked so tirelessly and passionately to bring this Day into existence.

For too long, persons with Down syndrome, including children, have been left on the margins of society. In many countries, they continue to face stigma and discrimination as well as legal, attitudinal and environmental barriers that hinder their participation in their communities.

Discrimination can be as invidious as forced sterilization or as subtle as segregation and isolation through both physical and social barriers. Persons with Down syndrome are often denied the right to equal recognition before the law, as well as the right to vote or be elected. Intellectual impairments have also been seen as legitimate grounds for depriving persons with Down syndrome of their liberty, and for holding them in specialized institutions, sometimes for their entire lives.

In many countries, girls and boys with intellectual disabilities lack sufficient access to mainstream education. The prejudice that children with Down syndrome obstruct the education of others has led some parents of children with intellectual disabilities to put their children in special schools or keep them at home. Yet research shows — and more people are coming to understand — that diversity in the classroom leads to learning and understanding that benefit all children.

The United Nations has worked for decades to ensure the well-being and human rights of all people. These efforts were strengthened by the adoption of the Convention on the Rights of Persons with Disabilities in 2006. The Convention embodies a paradigm shift in which persons with disabilities are no longer regarded as objects of charity and welfare, but as persons with equal rights and dignity who can make an enormous contribution to society in their own right.

On this day, let us reaffirm that persons with Down syndrome are entitled to the full and effective enjoyment of all human rights and fundamental freedoms. Let us each do our part to enable children and persons with Down syndrome to participate fully in the development and life of their societies on an equal basis with others. Let us build an inclusive society for all.

World Down Syndrome Day (1)

Hannah wasted no time in celebrating World Down Syndrome Day with the free coffee offer at Esther's Table in Annandale this morning!

Today is World Down Syndrome Day

Lots going on around the world today to celebrate the lives of people with Down syndrome have a great day, whatever you are doing, and please tell us about your day - photos welcome (send them to!

Today, 21 March 2012, World Down Syndrome Day will be officially observed by the United Nations for the very first time. On its 7th anniversary, World Down Syndrome Day will see people across the world celebrating the lives and achievements of people with Down syndrome. This day is great opportunity to both celebrate and to recognise the importance of inclusion and diversity and how positively these values impact on our workplace, home life and our communities.

The Australian Parliament will also recognise World Down Syndrome Day with Justine Elliott MP speaking in the House of Representatives and Senator Sue Boyce (parent from Qld, ex - Vic) speaking in the Senate. Please find attached the media release from Senator Jan McLucas, Parliamentary Secretary for Disabilities & Carers, acknowledging the contribution of people with Down syndrome.

In Australia this important day is recognised by many through hosting a morning or afternoon tea (T4321) in their homes, workplaces and communities, raising awareness and funds for Down syndrome. Hosting, attending or supporting a T4321 event is something we can all do to help create healthier, more inclusive communities.

Happy World Down Syndrome Day!

  • In New York the first ever UN Conference on Down Syndrome will start at 10.00 am NY time.

  • On Monday, Dave Hingsburger, in Canada wrote about a serendipitous meeting, I saw someone today, a post that is just right for this day.
  • Here is the link again to the Down Syndrome International video for WDSD 2012: I want to learn.

Tuesday, 20 March 2012

More local events for World Down Syndrome Day

FREE COFFEE for all people with Down Syndrome to mark World Down Syndrome Day!!
Wednesday 21st March
61 Annandale St, Annandale NSW

Mona Vale
Northern Beaches 321
Wednesday 21st March
Time: 3:45pm-5:30pm
Location: Apex Park, Mona Vale NSW
For further information please call Katrina on 0425 340 407

Far North Coast
Kingscliff TAFE WDSD and Harmony Day
Anyone living in Far North NSW is invited to come along to Kingsclff TAFE on Cudgen Road Kingscliff to join the campus celebrations on World Down Syndrome Day and Harmony Day.

The Student Association has joined with Chris Philp to promote this event across all north coast TAFE campuses and we are holding a morning tea from 9 - 12pm, Wednesday 21st March

Cost is $5 for a selection of coffees and cakes made fresh by our barista and chef students. 
Please come along and join us!

World Down Syndrome Day UN Conference: Webcast

Down Syndrome International's conference at the United Nations in New York on Wednesday 21st March will be webcast by UN Multimedia. There are 6 different channels - we will have to choose the one that refers to World Down Syndrome Day on the day.

The day's program is here in detail, in a press release from Down Syndrome International

The conference will be live during the early hours of the morning of Thursday 22nd March  for Australians (Eastern Australian time is 11 hours ahead of New York), but if you are a night owl or a very early riser you might be able to catch it live. UN Multimedia has recent archival video on the same web page, so we should all be able to see the broadcast at some time.

Make it Real rally: 6 capital cities, 30th April

Every Australian Counts, the campaign for a National Disability Insurance Scheme is stepping it up with a multi-city rally on Monday 30th April:  

Monday, 19 March 2012

Accessible Arts: Australian Youth Dance Festival call out

Exchange, engage and explore in an inclusive dance environment at the Australian Youth Dance Festival 2012, 8 - 14 April at Gosford.
Young dancers from across Australia are invited to attend the Australian Youth Dance Festival presented by Ausdance NSW.
Information about the event, scholarships and links for further details are provided here by Accessible Arts.

Northern Rivers parents' lunch: 18th May

DS NSW member Vanessa Stickland has issued an invitation to anyone living in the Northern Rivers or Tweed area of NSW who wishes to make contact with her, to come along to an informal lunch gathering at
Crabbes Creek (between Byron Bay and Murwillumbah) on Sunday 18th May at 12pm. 

This is not a fund raiser but a networking function for families to meet an exchange friendships and information for our children with Trisomy 21.

Please ring Vanessa Strickland on 0417 400 923

Oldest man with Down syndrome dies at 83

We are often asked about life expectancy for people with Down syndrome.  Currently, the life expectancy is usually given as into the late 50s, to early 60s, and continues to increase. As with any group, there are always a few people who lie beyond expectations for measures such as life spans. We are hearing about more people with Down syndrome living well into their 60s, 70s and even a few into their 80s.

The oldest man on record with Down syndrome, Bert Holbrook, died in the US last week, at 83.  This tribute is accompanied by a lovely photo of Mr Holbrook.

The article mentions that the oldest woman with Down syndrome on record lives in the UK.  Guinness World Records lists her as being 87, and still living in 2008 when their record was last checked.

Sunday, 18 March 2012

Leader of the Pack: a new web series launching 21st March

Glee star Lauren Potter really shines in her new role as Jenny Cole in this kick-ass trailer for The new comedy LEADER OF THE PACK web series: "A black girl sets out to save the planet and falls for a fun-loving white boy with Down syndrome who's blind to the love of the girl next door in this ultra diverse comedy."

Episode 1 will be launched on  21st MARCH  in honour of World Down Syndrome Day, here.
'Leader of the Pack' Facebook page.

Saturday, 17 March 2012

World Down Syndrome Day at beautiful Coffs Harbour

World Down Syndrome Day @

Coffs Harbour
- at Coffs Creek Playground
(near the Surf Club Car Park, weather permitting)

BYO Picnic from 11am to 2pm
Sunday 25th March, 2012

For further details email Lyn:

Let us in - I want to learn

Down Syndrome International presents the global video event “Let us in - I want to learn!” In partnership with 68 countries for World Down Syndrome Day 2012.

Please watch this video and help us create a single global voice for advocating for the rights, inclusion and well being of people with Down syndrome on 21 March.

Thank you!

The contributions are arranged alphabetically by country (Albania to Zimbabwe), so we see our own Grace Gilsenan quite early!

A nice demonstration that people with Down syndrome are born into all cultures, all ethnic groups, all nations - we are part of a world-wide community.

Friday, 16 March 2012

National Day of Action Against Bullying and Violence

People with disabilities, including those with Down syndrome, might be subject to bullying in subtle and overt ways - and they are often ill-equipped to deal with it.  The National Day of Action Against Bullying and Violence website has sections for parents, students and teachers.

Equipping a person with an intellectual disability with strategies to prevent and to deal with bullying is important, and requires thought and skill.  One of the best resources we have ever seen is Dave Hingburger's booklet, The Are Word.  It is very practical, and very accessible - takes about half an hour to read, and could change lives. It takes you way beyond the often used response, "just ignore it".

Down Syndrome NSW members can borrow it from our library, or you can buy it direct from the publisher, Diverse City Press for just under $10.

Playing to Their Strengths: Rosehill, 23rd March

There are still a few places available at the Down Syndrome NSW seminar, Playing to Their Strengths, for teachers and other school personnel at Rosehill next Friday23rd March.  Details here.

Details for Playing to Their Strengths and other DS NSW workshops in Newcastle,  28th - 30th March are here.

Hands Can Talk workshops March - April

Need to brush up on your sign skills, or learn the latest about Proloquo2Go? Hands Can Talk's metropolitan and regional NSW workshop schedule for March - April might be just the ticket.  Contact Hands Can Talk for all details of registration, venues, cost and content:

Ph: (02) 9824 8332, Fax: (02) 9824 8112, email: 

Combined Sign Language
Wednesday 21st March 6.30pm

Sign workshop 
Saturday 24th March, all day

Combined Sign Language 
Monday 26th March, 6pm to 9pm

all day workshop - 4th April

Signing for School and Playground (morning)
Proloquo2Go (afternoon)
23rd April 

2012 Entertainment Book is available now

Hundreds of valuable offers from many of the best restaurants, arts, attractions, hotel accommodation, travel and much more! A proportion of the sale comes to Down Syndrome NSW.

Please contact Hanna Wawryczuk  at Down Syndrome NSW, on
for a order form, or order and pay online here. 

Only VISA and MasterCard payments are available online.

Thursday, 15 March 2012

T4321 Morning Tea @ Oyster Bay

Janette Richardson invites you to join her for morning tea to celebrate World Down Syndrome Day:

10:30am, Tuesday 27th March
at Oyster Bay, NSW

Parents, children, grandparents and friends are all welcome to come, get together for a cuppa, a chat, share some stories, and make new friends.

For further details or to RSVP (if possible) please contact Janette Richardson on 9528 4639/ 0412 498 887 or

Library Thursday: 'How David Met Sarah' now in print

If you liked the sound of the e-book, How David Met Sarah, you will be interested to know that it is now available in print as well.  We will have a copy in our library soon, compliments of the author, Anne Kelleher - thank you!  It is also available for purchase through Amazon.

Anne wrote to us with her book offer:

The book has gone on to be endorsed by the National Down Syndrome Society and has garnered praise from family members, therapists, reading specialists, special education teachers and librarians, for the insights it offers into the world of the developmentally disabled.
Most recently, the Hartford Book Examiner had this to say:
"How David Met Sarah provides parents, educators and caretakers a rare resource that not only entertains but also exposes the realities of what it’s like to live with a disability. If knowledge is power, then sharing that knowledge is empowerment - both for the messenger and the recipient.
Ultimately, though, How David Met Sarah’s greatest achievement may be something far simpler (and yet equally profound): It reminds us that, no matter our background, we all desire the same things in life – and that a sense of love and belonging is chief among them."  

She has also been busy with preparation of the second title in the series of high interests/low ability readers, prompted by her brother David's need for adult stories that he could read.  David is a 36 yr old with Down syndrome.  When David was Surprised will be released soon, and the third title is brewing.

Follow progress of the series and read all the reviews of the published titles on the blog, When David met Sarah.

Wednesday, 14 March 2012

Special Olympics Asia Pacific Games will be held in Newcastle in 2013 !

Great excitement! 

Special Olympics Australia has just announced that it will host the inaugural Special Olympics Asia Pacific Games in December 2013, in Newcastle, NSW

Well done SO Australia, and Newcastle ... all the very best for your preparations and a grand event! 

The announcement was made at the Sydney Opera House - and Mel Eustace and Chris Bunton (who both represented Australia at the World Games in Athens last year) already have their photos with the Governor General in the press here, on the Governor General's website, and amongst the 45 really fabulous photos in the Special Olympics Australia Facebook albums.

All of the media, including TV coverage, and parliamentary responses are on this Special Olympics webpage.

News from the Board … March update

Welcome to the first regular update from the President and Board of Down Syndrome NSW

A number of members have suggested that it would be informative for the board to, as well as providing its annual report to members, provide some more regular updates to let people know a bit more about ‘what the board is up to’ so this month I present the first of these.

It was a great honour and privilege to be elected President of Down Syndrome NSW at the 2011 AGM and to join a wonderfully dedicated and diverse team of board members. The place has changed a bit since I was last on the board (or ‘committee’ has it was then) in 2007. The most obvious physical change is our extra space – office space, meeting space, space for our expanding library, space for new staff, new projects and, finally, some space for families! Our original ‘cottage’ at North Parramatta served us well for the first few decades, but as we have grown ‘up and out’ we simply outgrew our ‘government-issue’ 70 square metres.

Another obvious change is the number of new faces and new roles – our staffing has increased from 7 full time equivalents to 12 over the past four years so we are still officially a ‘small business’ facing much the same pressures today as any small business does. All up, we have almost 20 people in our staff team now (mostly part time and casual) . Down Syndrome NSW’s greatest asset has always been and remains our people!

It is great to see the new work being done by our expanded team for example in education of hospital staff, expansion of our UP!Club, our regional expansion and of course the exciting Independent Living Support Initiative (ILSI) we have developed with the NSW government.

Another change, as I alluded to is the change from having a ‘management committee’ to a board of governance’. With our growth, in 2009 the members voted to move from a ‘management committee’ to a ‘board of governance’. The board has been able to concentrate more and more on overall strategy, direction and governance while letting the professional managers and staff ‘get on with the job’ of the day to day running of the organisation.

Some of the work of the 2011 – 2012 board to date has included:
  • implementing the board charter developed by the previous board and a checklist reflective of the charter to keep us on task and on track during board meetings
  • reviewing the key performance indicators (kpis)of our strategic plan 2010 – 2014, and ensuring we can measure our progress on achieving the objectives of our strategic plan. One of the goals of our strategic plan was the creation of a ‘national entity’ representing people with Down syndrome and families Australia-wide, and with its own intellectual property. It is particularly satisfying for me and the board to finally see the birth and development of ‘Down Syndrome Australia’ as a national ‘voice’ to government and the Australian community. 
With growth, of course, comes change. And change can present challenges for any organisation. The board has been working with Steve Clarke, the CEO to oversee a staff restructure involving primarily our finance /administration and project development teams to enable our best use of our limited resources and to ensure we fund and manage our growth in ways which best responds to our members and families’ needs, best meet our strategic plan objectives and best secures the long term sustainability of DS NSW. The board and I recognise that restructures of course can be difficult times for staff - I thank the team for the positive ways they are responding to the opportunities and challenges ahead. Our family support services of course remain at the heart of what we do.

Our growth has of course been driven by some wonderful fundraising achievements due in no small part to the wonderful support of our families, members and donors. 

The Board and I look forward to following the exploits of our intrepid ‘scrappers’ taking part in the Scrapheap Adventure Ride which has raised over $20,000, as well as hearing the stories of everyone holding morning teas and other T4321 events to celebrate our first ever United Nations endorsed World Down Syndrome Day.

Please feel free to contact me any time on the email below or via the Association offices or our Chief Executive Steve Clarke, to discuss any aspects of the work of the board.

Happy World Down Syndrome Day!

Best wishes
Stephen Ricardo

After school ... what then? A few places still available

Family Advocacy advises that a registrations are still open for their After School ... what then series of workshops in Newcastle, Gosford, Blacktown and Burwood next week (20th - 23rd March).

Public Lecture: People with Intellectual Disabilities Conducting Research

Jointly hosted by University of NSW, University of Sydney and the Centre for Disability Studies  (information about Kelly Johnson's lecture,Towards a good life for people with learning disabilities, on 21st March is here):

Public Lecture: People with Intellectual Disabilities Conducting Research

26th March, 5:00pm - 6:00pm
John Goodsell Building Room 119, University of NSW

Why are we talking about inclusive research?
For too long people with intellectual disabilities have been researched on. For too long they have not had any control over what is researched and how it is done.

Who will be talking?
Professor Kelly Johnson, Norah Fry Research Centre, University of Bristol
Professor Jan Walmsley, Open University, UK
Members of the Inclusive Research Network, Centre for Disability Studies, University of Sydney

Reminder: information about Prof Kelly Johnson's lecture,Towards a good life for people with learning disabilities, on 21st March, also at UNSW,  is here):

Tuesday, 13 March 2012

World Down Syndrome Day in the Hunter (Mayfield)

RSVP to Joelene Rutherford M 0439 606 134 E

or via Facebook: search for DSNSW(Hunter) - t4321: celebrating World Down Syndrome Day

Generous Scrapheap donation - thank you Pilot Air!

We've just learned that Martin Wyllie and Pilot Air have generously continued their support of the Scrapheap Adventure Ride by donating $5,000 toward this year’s event.

If you are in need of a new air compressor please contact these guys! Thank you, Martin!

Monday, 12 March 2012

Weekend Australian article on NDIS

John Della Bosca, CEO of the Every Australian Counts campaign for a National Disability Insurance Scheme comments on Mike Skeketee's article in this weekend's Australian newspaper:

Though back on p.22 on the week-end, this article represents a valuable breakthrough for the campaign - a serious, non-specialist economic and political reporter explaining by life example the Productivity argument for an NDIS in a popular newspaper - the lights are slowly going on one by one - but they are going on.

Read the article and further comments here. 

Scrapheap Adventure Ride 2012: good on you Kanahooka High School

Kanahooka is  suburb south of Wollongong.  Perry posted on the Scrapheap Facebook page about their fantastic effort for Scrapheap Adventure Ride 2012 ... what a wonderful initiative from the school, and a great experience for the students:

The Kanahooka High School scrapper project is underway!

It was a bit of a logistics nightmare getting everything organised but we are up and running. The bike arrived at school today (29th February) and the students will begin working on it tomorrow. We have a countdown going as you can see from the photo.

There is a lot of excitement around the school and many faculties and subjects are assisting through kindly donating their time, expertise and money to the cause. Students in our Small Motor Maintenance Group are preparing the motorcycle. Industrial Arts are providing technical assistance. Geography students are planning the route and the Art Department are painting the motorcycle.

Good luck on the ride, Kanahooka High!

Go the Scrapheap Facebook page to see the other, sometimes weird and wonderful scrappers getting ready for the April 6th event, or here to register your bike or to sponsor a team.

Sunday, 11 March 2012

Other people's blogs ...

Some highlights of this week's reading around the blogosphere ...

10 yr old Stan's Dad, Steve Palmer reflects on what he's learned over the past decade on the BBC's OUCH blog.

Susan, mother to three young people with Down syndrome (and three others), spends a day with Jake, over on April Anecdotes.

Dave Hingsburger's contribution on International Women's Day ... A W.O.M.A.N. with Down syndrome.

And a new blog that is going on our 'must read' list:

The good Doctors Chicoine and McGuire from the Adult Down Syndrome Centre in Chicago have started a blog, giving us another way of benefitting from their excellent work.

Friday, 9 March 2012

Health of people with intellectual disability in Australia: radio interview

The Australian Association of Developmental Disability Medicine (AADDM) conference is being held in Sydney today (and yesterday).

Assoc Prof Julian Troller ( Department of Developmental Disability Neuropsychiatry, UNSW) talks to Radio Australia about why people with intellectual disability are not getting as good health care as most Australians, and what we need to do about it ... listen in online here.

Circles of support: All you need to know to get started and keep going!

Resourcing Families is running a practical workshop for families about the ‘how to’ of setting up,
running and maintaining a circle of support. Circles of support are an effective strategy for getting
more people involved in the life of a person with disability to support them in their life goals and
to have a lifestyle that suits them. This can be an enriching and empowering opportunity, as well
as an important strategy for keeping people safe into the future.

Nowra 2 April 2012 
South Hurstville 4 April 2012
Wollongong 3 April 2012 
Harbord 5 April 2012

The day is for families (mothers, fathers, adult brothers and sisters, other relatives) and friends of
people with developmental disability. It would be a great idea to bring any prospective circle
members with you. Families that include a young person with disability are encouraged to attend.

See the Resourcing Families website for more details about these events
or phone
Resourcing Families on 9869 7753 or 1800 774 764 (NSW non metro callers)

Thursday, 8 March 2012

International Women's Day

Today, 8th March, is International Women's Day ... what better way to join the celebrations than to share this glorious photo of  two young women with Down syndrome in Nepal, honouring their culture through dance?

Our thanks to Shila Thapa, President of the Down Syndrome Society of Nepal, and CEO of the Satyam Day Care Center for her photo. Since 2006, Shila and her colleagues have opened 5 day care centres for people with intellectual disabilities in Nepal.

Save 20% on See and Learn Speech kits until 31st March

Throughout March, Down Syndrome International (USA) is offering up to 20% off the price of their See and Learn Speech kits.

The discount code and link to the US DSE online store is here, in Frank Buckley's (CEO of DSE) blog post, 5th March 2012. Orders must be placed by 31st March.

Carers' Weekend Away: St George area carers

The Pole Depot Community Centre at Penshurst has asked us to circulate this information:

This experience may be an opportunity for you to take a break from your caring role and give you a chance to unwind and relax in an atmosphere of support and friendship.

..SHARED ACCOMMODATION.. Cost $50.00, lunches and drinks at your own expense

RSVP by Friday 6th April 
T (02) 9580 0688 F (02) 9580 4487

Assistance with Respite can be provided.

Wednesday, 7 March 2012

Celebrate World Down Syndrome Day with a T4321

The Australian Government’s response to the UN’s recognition of World Down Syndrome Day - 21st March -  from 2012 is here.

To celebrate, we are inviting each and every one of you to take part in this year’s T4321 event, by hosting a tea party in your community.

It’s as easy as contacting Priscilla on 02 9841 4444 or on for your free event kit, and for some great tips on how to put on the party of the year!!!

You can also download a copy of the T4321 Event Kit here, as well as the T4321 Event Registration Form and the T4321 Sponsor Form. Or you can register for your event online here.

If you would like to make a donation in celebration of World Down Syndrome Day and to support the work of Down Syndrome NSW, you can make your donation by clicking