Address details

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

Sunday, 31 October 2010

International Day for People with a Disability: NSW Ambassadors

Twenty one NSW Ambassadors for Don’t DIS my ABILITY, the NSW celebration of International Day of People with a Disability 2010 have been announced.  They include two people with Down syndrome, who will fill the role admirably, and who are in very good company.  Congratulations Audrey and Gerard!

Audrey O’Connor is an actor, writer and dancer who at just 19 already has a number of film credits to her name. Audrey dreams of continuing her passion for the arts full time. However, like most aspiring actors, she already has a reliable back up plan, recently gaining work experience at the Sydney Theatre Company. Audrey will be seen next in the short film Secret, which is based on a piece of her creative writing and will be competing in Tropfest 2011. Audrey has Down syndrome.
Gerard O’Dwyer is a man with a plan, not to mention a blue belt in karate. He is determined to achieve the goals he sets himself. The first on his list was to get a job. Tick! He works at McDonalds in North Parramatta four days a week. Next? To be a famous actor. He is well on his way, thanks to his involvement with the Up Up and Away Project for Down Syndrome NSW. In 2009, Gerard appeared in the Tropfest short film Be my Brother and was delighted to win the best actor award. Gerard enjoys swimming, dancing with The Merrymakers and practising karate.
What will they do as Ambassadors?
The Don’t DIS my ABILITY ambassadors are chosen each year from the arts, sports and business fields. Throughout the campaign these ambassadors will attend a variety of events across NSW to promote the key messages of the campaign. In representing the campaign they help in changing misconceptions surrounding disability by creating an environment that encourages participation in careers, leisure pursuits and social activities.
Read about all 21 Ambassadors here
Events across Sydney and regional NSW are listed here.
You can download a copy of  Made You Look, the official Don’t DIS my ABILITY magazine here, or pick up a print copy in local venues, as listed.

The Don’t DIS my ABILITY website provides links to follow the campaign on Facebook and Twitter, and the Don't DIS blog.
The campaign officially launches on Tuesday, 2nd November.

Saturday, 30 October 2010

ACT: reading workshops for teachers, parents

2 workshops to be presented by Dr Kathy Cologon, Macquarie University
Sponsored by the ACTDSA
An early reading workshop for teachers and teacher assistants supporting children with Down syndrome
Friday 12th November 2010
An early reading workshop for parents and carers supporting children with Down syndrome
Saturday 13th November 2010
Both days at
West Belconnen Leagues Club
Hardwick Cres Holt
These  hands-on one-day workshops will include discussion of current research and its implications for the education of young children with Down syndrome. The link between reading and speech and language development will be explored and practical ideas for early literacy experiences building on individual interests, strengths and contexts will be considered.
Whilst the focus of the day will be about early reading, ‘getting started’, Dr Kathy Cologon will also cover the main aspects of reading including reading comprehension. Reading comprehension will be discussed in terms of how to develop and assess it.
Please bring along a favourite book, song or some photographs of favourite people and activities for the child you have in mind.
Please see the this flyer and registration form for an overview of the day.  
Dr Kathy Cologon
Dr Kathy Cologon is a lecturer in early intervention and transition at the Institute of Early Childhood, Macquarie University. Kathy’s research focus centres on practical issues relating to children’s rights and social inclusion for young children.
Kathy has developed and implemented early intervention programs with young children and their families, including running an early intervention reading program in Canberra for many years. Her PhD research investigated early reading and phonological awareness development in children with Down syndrome. Since moving to Sydney, Kathy has commenced her current early reading research with families of young children with Down syndrome.

Thursday, 28 October 2010

Library Thursdays: Down Syndrome Education Conference DVDs

Another great collection of resources arrived this week from Down Syndrome Education International. Last year's Down Syndrome Education Conference at Newport Beach, California was filmed and DSEI have made dvd sets of each track. The sets for the Family 1 day conferences have 3 dvds. The Professional 2 day conferences have 5 dvds. Each dvd contains 2 sessions from the conference. Available sets are:

  • Family - Early Years
    Family - Childhood
    Family - Teenage
    Professional - Early Years
    Professional - Childhood
    Professional - Teenage
    Professional Speech and Language
These are very useful resources for families and professionals. All the evidence-based research from the experts at Down Syndrome Education International is accessible in video format at a time of your own choosing. Whether it is general learning needs, speech and language and communication development, maths, memory, reading, the benefits of inclusion, motor skills, social development, play at home or curriculum differentiation, these videos give information, techniques and experiences discovered in doing their research.
Since they are simply films of the conference, they could be a bit difficult to watch all at once since you don't have the same concentration that you would in a "live" conference. However, the information is so useful that it is watchable and you can use the convenience of a recording to take breaks when you need them and re-watch parts you missed that you couldn't do in a "live" conference.
The dvds are unfortunately only available in NTSC. Most dvd players are now capable of playing this format but because the films show the conference room with the notes up on a screen, I think the ease of reading these notes may have been aided by being in PAL format. If you think your dvd player would not play NTSC, you should be able to play them on your computer. There are some minor sound fluctuations, but these are not really a problem.
These dvds are a very valuable addition to the library. Down Syndrome Education International are certainly continually increasing access to their vast knowledge and research. Their books, dvds, webinars, conferences, journals, online help sessions, and now these new video recordings of this conference enable more people to educate themselves to help improve the lives of people with Down syndrome.
If you'd like to borrow any of these, just call or email.

DSEI Web Seminar Timetable
DSEI Online Advice session Timetable

Wednesday, 27 October 2010

Tuesday, 26 October 2010

All major political parties have endorsed the Supported Living Fund for NSW

A very encouraging result from the Political Forum held yesterday (25th October):
We won!!!
All major political parties have endorsed the Supported Living Fund and committed to its implementation
Last night, before a meeting room crammed with over 200 families, the NSW Minister for Disability Services, Peter Primrose, the Shadow Minister Andrew Constance and Greens spokesperson Ian Cohen, unanimously endorsed the 4 key elements of the Supported Living Fund, namely:
  • Providing new money
  • Extending the target group to include families not in crisis
  • Enabling people with disability to have a home of their own, using a combination of paid and unpaid/informal support
  • Enabling families and people with disability to direct their own support
This signals a fundamental shift in the way support will be provided to people with disability and their families in NSW.
We want to thank all who have supported this campaign. Your personal letters, emails and meetings have brought our aspirations and challenges alive.
A verbal commitment is one thing...implementation is another. We will continue to work with both major parties in the lead up to the state election to bed down the next steps.
Finally, we need to build on the momentum generated by the campaign. For us at Family Advocacy, the priority is moving NSW to a self directed approach so that people with disability and their families have the opportunity and support to direct their own support, whatever the source of funding.
We will be in touch soon!!
Belinda Epstein-Frisch AM
Family Advocacy

For more information about the Supported Living campaign
Follow the campaign on facebook

Monday, 25 October 2010

Buddy Walk - Wollongong: Sunday 31st October 2010

If you missed Buddy Walk Sydney yesterday, you still have opportunity to join in the Buddy Walk fun next Sunday, 31st October in Wollongong.  The walk route is truly beautiful - along the foreshore, around the harbour, right beside the ocean. Picnic is lovely Stuart Park - acres of grass, shady trees, and a very friendly crowd. And let's hop for some sun!

SUNDAY 31/10/2010
Wollongong hero pages:  
(Registration essential)

Contact Priscilla at Down Syndrome NSW for further informaiton on NSW events:

More from Buddy Walk Sydney .....

From Steve Clarke, Down Syndrome NSW CEO:
Down Syndrome NSW celebrated its 30th Anniversary this weekend at Buddy Walk – Sydney 2010. Since that first formal meeting of the Association on 23rd October, 1980, we really have “come a long way, baby” and we sure we were not going to let a little bit of rain stop our parade.

The Sydney Morning Herald reports close to 1000 people set off from Circular Quay and crossed the Harbour Bridge this year for Buddy Walk on the most miserable cold and wet October day imaginable.
By the end of the Walk our clothes and walking shoes may have been sodden but our spirits were not.
It was only 14 degrees but felt a lot colder as the undeterred Buddy Walkers arrived at around 11am to be greeted by face painters, clowns, sausage sizzle, and the reviving tunes of DJ James Vantol.
Still more came to huddle out of the rain at the Buddy Walk picnic and concert in the Plaza under the Bridge’s great steel deck.

There were plenty of feet hitting the dance floor all afternoon in soggy socks and shoes to groove to a sensational line up of Phil Davidson, Danceability, the Leonie Brown Dancers, “Raise Your Voice” and Steve Passfield’s Handpicked Band.

Big thanks to: all the performers, our wonderful and dedicated volunteers including the teams from JCI International, Boston University, Sydney Cove Rotary, St George Central Rotary, St John’s Ambulance, University of Notre Dame, UP!Club, set up crew “Clinton May and the boys”, stall holders and sponsors Justin Longhurst, Paul Brindle and Cafe2U, raffle prize sponsors BridgeClimb, Craig Wing and NSW State of Origin Team 2010, Citizen Watches, Special Children’s Christmas Party, gift sponsors Tupperware Australia, merchandise sponsor Look Design, drinks sponsor Coca Cola, staging sponsor Butlers Hire, MC Kim Wilson, environmental services Brett Parker, amenities sponsor Annette Holt, volunteer media officer Jess Chalker, communications coordinator Di Draganovic, other event coordinators Tara Grech, Stuart Cook, Brooke Jones and organisers Priscilla Leong, Jackie Little, Margot Elliffe, Shanon Elliffe and Nathan Harrod.
More Buddy Walk Sydney photos here.

Buddy Walk Sydney 2010: first pictures

October usually means beautiful spring weather in Sydney - this year has been an exception! 
Yesterday was cold and wet, wet, wet - but Buddy Walk was a blast with hundreds turning out, and the Harbour Bridge itself providing shelter in Bradfield Park for the 30th Anniversary concert and picnic to go ahead. It was  a great day in spite of the weather. 
Today's SydneyMorning Herald has a fabulous photo taken by Dean Sewell on p 7, under the heading "sha;; we dance ..." - it's not available online yet, so you'll have to get a print copy. Don't miss it!
Here are the first pictures in, thanks to Ethan and his family and friends.
Many thanks to organising team, participants, sponsors, entertainers and our wonderful volunteers (in the yellow T shirts).  See you next year, whatever the weather!

Made it!

 More Buddy Walk Sydney photos here.

Saturday, 23 October 2010

The right to an ordinary life

A letter in response to Belinda Frisch's opinion piece on the Supported Living Fund for NSW is published in today's Sydney Morning Herald:

I am a mother of a child who has an intellectual disability. Reading Jack's story evokes strong emotions in me ("Support for living would save lives from despair", October 22). Having experienced disability service systems at first hand, I appreciate the bureaucratic nightmare that exists in a crisis-driven manner.
For Jack to be denied his rite of passage into a home of his own, supported by those who care about him, is outrageous. It demonstrates how little value is placed on people with differences and their right to an ordinary life like other young men and women.
The proposed Supported Living fund gives me hope for a better world for our daughter. Government has the power to light this flame or extinguish it. I need to hear a "yes" from Peter Primrose and Andrew Constance.
Dianne Samuels Towamba

Classic video

A TV PSA made for the Special Olympics World Games in Ireland some years ago, this is a very powerful 42 seconds of video.  It has been widely circulated, but you might not have seen it before:

Friday, 22 October 2010

Buddy Walk – Sydney 2010: this Sunday, 24th October - latest updates and program

Meet up / registration
We are meeting again at First Fleet Park, West Circular Quay.
We are expecting record numbers this year, so we recommend getting there in plenty of time to register (eg between 9 - 9:30am) before the event (it’s free and only takes a minute), or registering online beforehand (again free), so that we can all be ready for a leisurely 10am start!
This year’s Buddy Walk will be officially launched at 10am by Minister for Disability and Volunteering, Peter Primrose, Down Syndrome NSW President Ken Hancock and a representative of our UP!Club.

We will be walking from Circular Quay, through the Rocks and over the Sydney Harbour Bridge to Bradfield Park. Volunteer marshals will help guide our way. The Walk is about 2.5km, there is no hurry and everyone is encouraged to go at their own pace.
Concert and picnic
Whether or not you can make the Walk this year, everyone is welcome to come along and join in the celebrations at our free 30th Anniversary Concert (program below) and picnic at Bradfield Park (under the Bridge Pylons at Milsons Point – near Luna Park)

There will also be plenty for the younger kids with face-painting, tattooing, a clown and an enclosed children’s playground next to the concert area.

Concert and Entertainment Program – Bradfield Park

Guest DJ James Vantol warms up the crowd with some dance and music tracks. James is a member of the UP!Club and has set up Sydney City Discotheque

Acclaimed singer songwriter Phil Davidson, dad of Georgia who has Down syndrome, performs ‘Georgia’s Smile’ and other favourites

DanceAbility - Inspired by the Merrymakers, this inclusive dance group features children with a wide range of abilities, including children with Down syndrome.

Leonie Brown’s Dancers

“Raise Your Voice” An all singing group featuring young people with Down syndrome

Steve Passfield and Handpicked- Golden Guitar winner Steve Passfield (who also happens to be a dad of a young man with Down syndrome) will get everyone’s toes tapping and feet stomping in a high energy musical finale the whole family can enjoy.

Raffle Draw

10am – 2pm
Face-painting, tattooing and roving clown
BBQ and Picnic

10:30am – 2pm
· Sausage sizzle (donation)
· Fresh orange juice and homemade lemonade ($3 and $5)
· Fruit stall (50c and $1.50)
· Soft drinks & coffee

BYO picnics welcome (you can use our new ‘picnic porter’ service to transport your picnic from Circular Quay to Bradfield Park)

History - Celebrating 30 years (1980 – 2010)
This year we are celebrating the 30th Anniversary of Down Syndrome NSW, the achievements of people with Down syndrome and their families, and the great steps forward made in the last 30 years, under the banner “we’ve come a long way, baby!”
Down Syndrome Association of NSW was formed in 1980 by parents of babies and young children with Down syndrome, who were demanding the right to raise their child at home (as opposed to ‘institutionalised care’ which had been the norm until the mid 1970s), and found a lack of support, knowledge and resources to do so.
The parents got together without any government funding but with a drive to provide the best opportunities for their children, and formed the Down Syndrome Association of NSW.
Because of the work of the association and other groups, breakthrough ‘early intervention’ work and the determination of their parents, these babies and children, who are now entering their 20’s and early 30’s, have expectations and opportunities higher than any previous generation. At Buddy Walk Sydney – 2010 we’ve come a long way in just 30 years…
‘The best part of Buddy Walk? The time we got to share with our family, friends and people we had never met before. It was nice to know we all have something so wonderful in common, it gave us confidence that our children, even though they may be a little “different” can be accepted for who they are amongst such a widespread and loving community. Parent.
I do hope you can join us and help us make Buddy Walk – Sydney 2010 another memorable and very special event.
Kind regards,
Steve Clarke
Chief Executive Officer
Down Syndrome NSW

Support for living would save lives from despair

Belinda Epstein-Frisch, from Family Advocacy, argues the case for a Supported Living Fund for NSW in today's Sydney Morning Herald.

You can respond by sending a letter to the editor or commenting on the article at
Political Candidates Forum this
Monday 25 October, 7.15 for 7.30 pm
Ryde Eastwood Leagues Club, 117 Ryedale Rd West Ryde.

For more information about the Supported Living campaign

Follow the campaign on facebook:

Access All Areas Film Festival 2010: Wagga Wagga, Orange, Sydney


- a brand new program of Australian features and short films. Films are made accessible by offering open captions, audio description, comfortable and extended wheelchair access and introductions and Q&A sessions Auslan interpreted.

The festival demonstrates how easy it can be to make cultural life accessible to all, and we hope it inspires others to follow suit. The Access All areas Film festival is organized by the not for profit company The Festivalists Ltd and co-presented by the Human Services, Ageing Disability and Home Care (ADHC).

Venues in Wagga Wagga, Orange, Parramatta and Sydney

  • Summer Coda
  • Happy Feet 
The festival is also touring a program of short films for children in NSW schools.

Emerge Leadership Conference

The Emerge Conference is an exciting gathering of young people with disabilities who want to inspire change in themselves and others. Mixing inspiring speakers, performance and an opportunity for your opinions to be heard all in an action-packed day!
Run in partnership with ING Foundation, ING Australia and The Spastic Centre it is also draws to an end a 9 month Leadership program for young people with disabilities.
This is an exciting opportunity not to be missed!!
Presenting will be Sam Cawthorn; hear his amazing story of bouncing back after doctors said he would never survive. Blind athlete Lindy Hu and many others. Plus Live music from one of Australia's top Hip Hop artists - Morganics with special guest performers - The First Flight Crew!

Sat November 20th
Crowne Plaza Hotel, Baulkham Hills, NSW
$20 (includes lunch and light refreshments)

Register by 10th November.

For more information or an application form contact Peter Horsley, phone 9975 8466, email  or Josh Page, email

Thursday, 21 October 2010

Library Thursdays: The Guide to Good Health for Teens & Adults with Down syndrome

The arrival of The Guide to Good Health for Teens and Adults with Down syndrome by Dennis McGuire and Brian Chicone (Woodbine House, 2010) was much anticipated. All copies of the authors’ last book, Mental wellness for adults with Down syndrome, are continually borrowed from the library and most borrowers end up buying their own copy to refer to and re-read. I think The Guide to Good Health will be just as popular.

It is clear reading both books that the authors, Brian Chicoine and Dennis McGuire, directors of the Adult Down Syndrome Center of Lutheran General Hospital in Chicago, have spent much time with teenagers and adults with Down syndrome. That time has built up knowledge, respect towards, compassion and understanding of people with Down syndrome. It is clear that the authors have the skill and desire to help people with Down syndrome achieve good health and satisfying lives. It would be great if we all could have such doctors looking after us. The Guide to Good Health provides the next best thing.

Chicoine & McGuire explain the issues that affect health care of people with Down syndrome. They discuss how to promote good health in teens and adults, what doctor visits can achieve, what health problems occur more or less frequently in people with Down syndrome, how health concerns present differently and the interaction between physical and mental health. They use many case studies throughout the book to illustrate how problems may present.

A large section of the book is devoted to information about specific conditions that may occur in a person with Down syndrome. This section covers all areas of the body—skin and nail problems; ear, nose and throat and dental concerns; eye and vision; cardiac and pulmonary; gastrointestinal and liver; urology; orthopedic; thyroid and diabetes; gynecology; and neurological issues. Sleep problems, healthy sexuality and abuse prevention, cancer and Alzheimer disease are also included. Each condition’s symptoms, diagnosis and treatments are covered. A new parent may be overwhelmed at the possibilities but for parents of teens and adults, the descriptions and information are very useful when trying to decide whether further investigation is warranted or when a problem seems likely and more information is needed. This section would be particularly helpful to health professionals or carers working with people with Down syndrome.

Hospitalisation and care, long-term health care (including living arrangements), end of life decision (advance directives) as well as addenda with the health screening guidelines and recommendations on drinking fluids are also included.

A book like this has long been needed. The format is easy to use. The case studies, photos and sidebars all add to understanding. It complements Mental Wellness very well. There is some overlap between the two, but The Guide to Good Health focuses largely on medical issues and Mental Wellness focuses on behavioural issues. I feel that The Guide to Good Health is a required reference book for any health professional working with people with Down syndrome and family members will also find it extremely useful.

Related links:

Papers by Dennis McGuire & Brian Chicoine and others at Adult Down Syndrome Center

Adult Down Syndrome Clinic on Facebook - has many interesting notes.

Woodbine House - publisher details and excerpt

To borrow The Guide to Good Health... or Mental Wellness ... or any other resources, just call or email us.

Wednesday, 20 October 2010

Classroom language and reading trial shows promising results: DownsEd

Speaking at an international scientific conference in Rome, researchers from Down Syndrome Education International and the University of York today reported positive initial results from a landmark study of a targeted language and reading programme for children with Down syndrome.

The speakers reported promising initial findings from the early stages of a landmark trial of a language and reading programme designed for children with Down syndrome. Nearly 60 children with Down syndrome attending mainstream primary schools in York and Portsmouth are participating.

The study is the first large controlled trial of a educational intervention for children with Down syndrome.

Read on at Down Syndrome Educational News

Wordless Wednesday

2 expos and a festival

22 - 23 October 2010. Nepean Disability Expo.

3 November 2010. Free Disability Sports Expo, Holroyd. For more information contact Paul Spiteri on 02 9840 9913 or

3 December 2010. Embracing Diversity Festival, Albury/Wodonga. For more information contact Deborah Ross on 02 6055 3411 or

Tuesday, 19 October 2010

Individual medal tally for NSW swimmers: 5th international Down Syndrome Swimming Championships

Our thanks to Sarah Harvey for details of the NSW members of Team Australia's medal tally:

The 5th Down Syndrome International Swimming Championships were held in Taipei 2-7th October. Australia sent a team of 17 swimmers, including only three from NSW. The championships are run with heats and the best swimmers racing in the final, so the gold medal goes to the best swimmer in the world. The competition was stiff with more than twenty countries competing. There are some seriously good swimmers from Great Britain, Mexico, South Africa and Italy and teams from all over the world attended. Big teams attended from the neighbouring Asian countries, which was great.
The Australian team was very successful especially in the relays, where we had several swimmers of a high level so could make up winning teams. The Aussies are beautifully presented as a team always and absolutely love their time away as ‘The Australian team’. That feeling of representing your country is magnificent.
Our NSW swimmers did well. Brendan Foley, Daniel Rumsey and Lucy Dumitrescu had to race the others in the Australian team as well as the rest of the world which made it even more difficult. Daniel Rumsey was awarded Male Swimmer of the meet with 10 world records. Considering the work that these three swimmers have done over the past years, their medals were well-deserved!

Category Mosaic
Brendan Foley
Gold 3
Silver 6
Bronze 1
8 World records (Masters Category)

Category Trisomy 21
Daniel Rumsey
Gold 10
Bronze 1
10 World records
Relays 3 Gold, 1 Silver

Lucy Dumitrescu - Team Leader (Female)
Gold 2
Silver 1
Bronze 3
Relays: 3 gold

It would be great to see more NSW swimmers participating next time when the championships will be in Italy. Start training! It is fantastic to see a swim meet dedicated to DS swimmers only, with no other categories included. At last, like swimming against like!

Down Syndrome Down Under Swimming Organisation:

Events coming up next week

There's a lot happening in the last week of October - here's a reminder to help you get your calendar organised:

Buddy Walk Sydney
Sunday 24th October (Down Syndrome NSW)

My Time Green Valley - Guest Speaker, Dr Kathy Cologon (Macquarie University)

Political Forum on a Supported Living Fund for NSW
Monday 25th October (Family Advocacy)

Show Your Strength Rally
Thursday 28th October (National Disability Services)

Signing for Parents of Babies and Toddlers Workshop
Friday 29th October (Down Syndrome NSW)

Buddy Walk Wollongong
Sunday 31st October (Down Syndrome NSW)
Monday 25th October (Down Syndrome NSW/My Time)


Tactile Tours in Easy English for people with intellectual disability.

Both at Mark’s Park, Tamarama

Saturday 6 November at
1.00 pm till 2.30 pm

Wednesday 10 November at
5.30pm till 7.00pm

Each tour will have a guide explaining the sculptures in Easy English, for people who have difficulty reading and understanding written information. s it easier to learn about and enjoy the sculptures.

The tours are free but you have to book your tour. Places are limited. Book now!

Call 8399 0233 to make a booking. For more information and to make a booking on line go to Sculpture by the Sea
Source:  Accessible Arts

Monday, 18 October 2010

Buddy Walk - Newcastle 2010: first pictures

Newcastle turned on a beautiful spring day yesterday for Buddy Walk - Newcastle 2010, around the beautiful Newcastle Harbour foreshore.
Georgie Rose stepped out with hundreds of others, with the Hunter School Marching Band providing rhythm and entertainment.

Down Syndrome NSW Ambassador Ben Rogers of the Newastle Knights with Georgie-Rose at Buddy Walk Newcastle
A great day - congratulations to Anna Brown and her team of organisers, volunteers and sponsors, thanks to all participants and donors.

Sunday, 17 October 2010

Congratulations Team Australia: 5th International Down Syndrome Swimming Championships medal sweep

Months of training and planning has paid off handsomely for Team Australia at the 5th International Swimming Championships that wrapped up in Taipei last week, with Team Australia (including Lucy Dumitrescu, Daniel Rumsey and Brendan Foley from NSW), winning 
34 Gold medals
21 Silver medals
8   Bronze medals
30 World Records
Best Team of the Championships
Congratulations to everyone involved at DSDUSO !!

For full results, photos and other news, visit the Down Syndrome Down Under Swimming Organisation

Friday, 15 October 2010

Walk promotes acceptance and understanding: Buddy Walk Newcastle

Emma Swain, Maitland Mercury, 15th October, 2010

If she were a child living in the 1930s Karley Moran probably wouldn’t be alive.

But at age 13 and on the brink of adolescence, Karley is an example of how times have changed .....Read the full article here.

Labor to 'very seriously' consider disabled reform

Stephen Lunn, Social Affairs Reporter, The Australian, 7th October 2010

Disability reform, including a national no-fault insurance scheme, will be a key social policy priority for the Gillard government.
Jenny Macklin yesterday told The Australian that the government will take "very seriously" any recommendation made next year by the Productivity Commission, for a National Disability Insurance Scheme.
The Community Services Minister met the commission's expert panel on long-term disability care and support in Sydney yesterday, with a future NDIS high on the agenda.
"I wanted to attend this first meeting after the election to indicate to them that as senior minister I'd be taking responsibility for this area and also to show the importance that both I and government attach to it," Ms Macklin said.
She said the government was waiting for the commission's draft report early next year before its final report mid-year, at which time "the government will look very seriously at the recommendations".
With an estimated 760,000 people under the age of 65 living with a severe or profound disability, support for changes in the way the disabled receive assistance is mounting.
During the election campaign, Julia Gillard said introducing an NDIS would be a "very, very major shift . . . but the status quo can't stay".
And in flagging-up the government's second-term agenda on September 28, Governor-General Quentin Bryce made a specific reference to disability as "a national priority that needs a national response".
"The government therefore looks forward to giving careful consideration to the Productivity Commission's forthcoming report on a national disability insurance scheme," Ms Bryce said.
Ms Macklin said disability reform was one of her top portfolio priorities for the current term.
"Like the Prime Minister, I know the current system is not good enough, and we know we need a new approach," Ms Macklin said.
"In the meantime, we have put in place some other significant reforms, including substantial improvements to the disability support pension."

Buddy Walk - Canberra (Saturday 16th October) - change of venue

Due to wet weather, Buddy Walk - Canberra will be moving location indoors to Merici College located on Wise Street, Braddon ACT.

It will be held in the hall, starting at 10:00 am.
There will be face painting, games, jumping castle and sausage sizzle.

For further info call Jan 0458 282 545 or Lisa 0423 743 531 or Tracey 0425 335 172.

Buddy Walk Wagga Wagga (Saturday 16th October) - cancelled by torrential rain

We regret that tomorrow's scheduled Buddy Walk at Lake Albert, Wagga Wagga has been cancelled until further notice, because of torrential rains and flooding of Lake Albert.

More information will be posted as it becomes available.

We hope all are safe and as dry as they can be in Wagga Wagga and surrounding districts.

Fingers crossed for Canberra (Saturday 16th) and Newcastle (Sunday 17th).

Channel 9 news story to look out for - next week

One for your diary, Blackberry, iPhone, or a note on the fridge:

Down Syndrome NSW members Evelyn Scott and her daughter Kylie have been interviewed by Channel 9 News to mark Carers Week (next week).

Look out for them on Channel 9 News bulletins next week – most likely to be, we are informed, the 6pm bulletin on Wednesday 20th October.

Thursday, 14 October 2010

Library Thursdays: I'm Down with you

New in this week is a collection of gorgeous photographs, I'm Down with You: An inspired journey by Jagatjoti S. Khalsa with Darren Setter (published by The Other Person is You, 2010). Over 100 black and white portraits of individuals with Down syndrome and some family members and friends. The individuals range from babies to adults and they all convey a wonderful spirit as well as their individual personalities.

Also included are essays by the founder of the US NDSS, Betty Goodwin; actors Sharon Stone and John McGinley; and founder of Best Buddies, Anthony Shriver. The photographer and creator of the book also writes some beautiful thoughts as do family members and friends who wrote the captions for the photos.

This would be a lovely book for a new parent to peruse as well as anyone who needs a bit of a lift. It would be very difficult to look at this book and not feel uplifted.

Wednesday, 13 October 2010

Tuesday, 12 October 2010

Group homes right for some, but not for all

Two responses Adele Horin's recent article about the failure to make reasonable progress in accommodating people with disabilities in NSW, were published in yesterday's Sydney Morning Herald, in the Letters to the editor columns.  Scroll down to 'Group homes right for some, but not for all', both adding to the debate about the nature of housing options designed for people with disabilities.

And two more replies are published in today's Letters to the editor, scroll down to Living ordinary lives is everything.

ACT Buddy Walk, Saturday 16th October: Event Kit

An Event Kit, with full detials about times, the route and program for the ACT's 2010 Buddy Walk this weekend is not available - click here, and scroll down to 'Canberra'

Have a great day on Saturday!

Dedicated aunt and uncle, runners and walkers for Down syndrome

Fiona and John Waters took part in their first Buddy Walk in 2009, in support of Fiona's nephew, who was recently diagnosed with Down syndrome.  This year they will bring along 12 month old Leila - she was due to arrive on the day of Buddy Walk, but considerately waited another 2 weeks to make her appearance.
They've had good training for this leisurely walk and picnic - all three participated in the City 2 Surf in August, and raised $1,000 in sponsorship for Down Syndrome NSW - how dedicated is that?  Fiona said,
Finishing the race was without a doubt the hardest thing we have ever done yet at the same time it was one of our most rewarding achievements. We raised $1,000 for Down Syndrome NSW and are extremely proud of our efforts and very grateful to all who supported us.
Thank you so much for your support and fundraising, and we look forward to meeting Leila on Sunday week, at Buddy Walk - Sydney.  Your nephew is a lucky little boy. 

Monday, 11 October 2010

Volunteers invited for Buddy-Walk Sydney, on Sunday 24th October

We are looking for a number of volunteers for this year’s Buddy Walk to be walk marshals to help direct Walkers, and also opportunities for other roles - if you have a creative streak there are also volunteering opportunities for face-painting, clowning, photography, or providing other entertainment.

Buddy Walk Sydney is on Sunday 24th October, starting again at First Fleet Park West Circular, and walking over the Sydney Harbour Bridge but picnicking at a new glorious spot right under the Bridge on the harbour foreshore at Bradfield Park looking straight across at the Sydney Opera House.

Walk Marshals are required from 8:30am to around 11 – 11:30am. A few volunteers are required earlier to help with set up and registrations, and some later to volunteer at the picnic and concert (until around 2:30pm) – different jobs are required at different times, so when you register please indicate the hours you would be available.

To volunteer, please contact Priscilla, on  9841 4404 or 0417 066 845, or go to and click the link to ‘book online for Buddy Walk Sydney’ (please let us know your t-shirt size for your free Buddy Walk volunteer t-shirt!)

All volunteers are invited to stay to join us for the picnic – free sausage sizzle and refreshments – and free 30th anniversary concert.

Further details about volunteering and about the event are here.  You can also share this information with potential volunteers via Facebook.

Learning from people with Down syndrome

After a couple of rather bleak news reports last week, here are some more uplifting offerings, each about people with Down syndrome from whom we can all learn:

No agenda - about Cedar, a young woman who grew up in the wide open spaces of Montana, with a great rapport and skill with horses.

Faulkner (University) dedicates field in honor of Stalling's son - Gene Stallings is a well known US football coach, whose book, Another Season: A Coach's Story of Raising an Exceptional Son, about his son, John Mark who had Down syndrome is available for members to borrow from our library.


Saturday, 9 October 2010

Empty promises of freedom

A substantial article in today's Sydney Morning Herald by Adele Horin shines a searing spotlight on the slow progress several the NSW governments have made in fulfilling promises to people with disabilities dating back nearly thirty years.  Adele Horin visited one very large institution with the CEO of Ageing Disability and Home Care (ADHC), Jim Moore, and spoke with past and present staff of others, and with families and advocates.
Read the article here, or better still, read the print edition (News Review section) that includes one family's perspective on the move to a community group home for their son who has a sever disability, Aaron's life is 'better now in every way' (they had been very sceptical about the proposed benefits).
 It is not easy reading, but it is good to see the issues aired so publicly in the press.
 The article includes this information  published recently by the NSW Ombudsman, in a breakout box:
 Number crunch
  • In 1998 more than 2000 people with disabilities live in residential centres. NSW government says they will close by 2010.
  • Now 1600 still live in those centres.
  • There are 31 residential centres.
  • The largest centre has more than 400 people.
  • There are no plans for the redevelopment or closure of the remaining six ADHC centres, accommodating more than 900 people.
  • Of the 22 non-government residential centres, public plans are in place for the redevelopment of two of them.
Source: NSW Ombudsman Special Report to Parliament, 2010

Friday, 8 October 2010

DownsEd web seminars

Down Syndrome Education International offers online information events in a number of formats, some free, some with a fee.

Free online advice sessions
A timetable for free online advice sessions taking place to the end of the year is now available. Topics include reading, literacy, inclusion and the See and Learn programmes:

Web seminars and online courses
A timetable of events from now until June 2011 is now available:

Very useful and accessible for families and professionals everywhere.

Practical Wisdom - Phronesis: Sometimes the world really does revolve around food.

Another excellent and timely reminder about the place of food in a school day from Joan Medlen in this recent post, Sometimes the world really does revolve around food.

Not every accommodation that needs to be made at school is directly about teaching and learning - we need to attend to the ordinary and the biological before the teaching can be effective and learning can happen.  A good reminder of another "non-behavioural" and "non-disability" cause of challenging behaviour.

Thursday, 7 October 2010

Library Thursdays: Pregnant Mother's Guide to Down Syndrome and What Parents Wish They'd Known

A new publication for expectant parents whose baby has been prenatally diagnosed with Down syndrome is available to download at Down Syndrome Pregnancy.

Diagnosis Down Syndrome: A Pregnant Mother's Guide to Down Syndrome by Nancy McCrea Iannone and Stephanie Meredith looks at the feelings you may have, how to break the news to family and friends, how to deal with others' comments, birth plans, preparing for breastfeeding, possible health issues, early intervention and other services and finding resources.

There is quite a lot of information in this 75 page booklet. Some may find it too much, but it is nice to have it all gathered in one place for those who are seeking this information. Some parts, mainly the services and resource section are not relevant to those outside the US but on the whole, it is all good, well researched information. There is also a blog to go with the book so that parents to be can leave comments related to the various sections of the book.
Down Syndrome Pregnancy are planning future booklets which include a book for family and friends, one about adoption, one for fathers and one for parents whose screening tests indicate a higher chance of Down syndrome but decline further testing.

Also of interest is a booklet available for free download from Woodbine House's website. What Parents Wish They'd Known compiled by Kathryn Lynard Soper, the editor of Gifts and Gifts 2 and the author of The Year My Son & I were Born.

The comments included in the booklet were taken from online forums, Downsyn (, Uno Mas! ( and T21 Online Community (
If you'd like to borrow Gifts, Gifts 2 or The Year My Son and I were Born or anything else, just email or call.

New Down Syndrome Research and Practice articles available online

Seventeen new articles from the scientific journal Down Syndrome Research and Practice, published by Down Syndrome Education International  have been made available on the Down Syndrome Online website.

These articles include twelve peer-reviewed research reports, reviews and case-studies, alongside a research forum report, an independent review of the Down Syndrome Issues and Information – Adult Living Series (reviewed by Prof Trevor Parmenter), and three articles presenting the practical observations of families, carers and practitioners.

Titles, brief descriptions and links to each article are here.

Rally for Stronger Together: National Disability Services

You, your colleagues, people with disability and families are invited to attend a RALLY FOR STRONGER TOGETHER to be held in the Sydney Opera House forecourt at 12 noon on Thursday 28 October, 2010.

Alan Jones, AO, has agreed to MC the formalities and we need your help to secure the attendance of at least 5,000 people at the rally.

The Premier, Kristina Keneally and Leader of the Opposition, Barry O’Farrell have both been invited to attend and speak at the rally.

Here’s how you can get involved:
•  A website has been created with all information you need:
•  A Facebook page is also operating which you can join to show your support, and you can suggest this page to friends:!/showyourSTRENGTH?ref=ts
• And a Facebook event that you can say you’re attending, and invite friends to attend:!/event.php?eid=155540344471009&index=1
• Attend the Rally for Stronger Together on Thursday 28 October at the Sydney Opera House, and encourage others to attend.

Rally formalities commence at 12 noon and run for approximately 45 minutes, though we advise that you assemble at the Sydney Opera House by 11.30 am.

The theme of the rally is “Show Your STRENGTH”, calling the sector, people with disability, families, carers, and the community to gather in support of the successes achieved over the past five years under Stronger Together and to encourage the Premier and the Opposition Leader to ‘show their strength’ by elevating the critical issue of disability above the political fray and sign a joint commitment to fund the second five years of Stronger Together.

This rally is an opportunity for the disability sector to show its strength and we need your support to make this rally a success.

In the spirit of being ‘stronger together’, the priority of the day is to secure unified, bipartisan support for funding the second five years of Stronger Together. While numerous important issues and challenges face the sector, the focus of the day is the bigger picture of Stronger Together funding rather than compete with other debates and agendas. The rally’s success depends on it, as does the sector’s support to continue to deliver services and outcomes for people with disability, their families and carers in NSW.

National Disability Services - New South Wales

Wednesday, 6 October 2010

Dream Cricket Day for primary school aged children - short notice, apply now.

This invitation for primary school aged children with Down syndrome to participate in the Dream Cricket Day is just in - you need to respond quickly - applications close on Friday 8th October:

NSW and ACT students with disabilities are being offered an opportunity many other junior cricketers only dream about: the chance to play in a match on Bradman Oval.

Dream Cricket Day, on Friday 29th October, gives primary school students the chance to share in an exciting game of cricket and visit the Bradman Museum, with the underlying aim to promote the health and wellbeing of these students.

The Hon. John Howard, Patron of the Dream Cricket Day, encourages all school principals to send students to support this outstanding initiative, which will provide a model for schools and communities to follow by arranging similar activities in the future.

The Dream Cricket Day is an initiative of The Movement Disorder Foundation conducted by The Rotary Clubs of Berrima, Bowral-Mittagong and Moss Vale with the support from the Bradman Foundation, the Cerebral Foundation, Northcott Disability Services and many generous sponsors.

Nominations for participants are open until Friday 8 October. For more information and a registration form email:  or call Ken Adams on 0407 653 175 or Brian Pattinson on 0409 828 030.

Wordless Wednesday

Saturday Activities For Children with Special Needs

Baptist Community Services is offering a new exciting Saturday Activities Program as a part of its disability respite services to the parents and carers of children with disabilities in the Northern Sydney region.

Program Name: Saturday Activities
Age Group: 5-8 (Puggles) and 8-12 (Echidnas)
Disability: Mild to Moderate
Eligibility: Assessment and Trial Outings
When: During the School Terms
Frequency: One Saturday Every Fortnight
Format: Outings and In-Centre Activities

For an Application Pack contact:
Gaye Terzioglu-Booth - Co-ordinator
Mobile: 0438 276 338
Office: 9346 1429
Fax: 9346 1204

Supported Living Campaign for NSW: forum date changed to 25th October

Family Advocacy:  Supported Living Campaign for NSW

Political Candidates Forum

7.30 - 9.00 pm Monday 25 October
(note change of date from 15th October at Parramatta as announced earlier)

Ryde Eastwood Leagues Club
117 Ryedale Road
West Ryde


Click here to go to the Family Advocacy website for all details of the event and the campaign.

Tuesday, 5 October 2010

My Time Green Valley (Liverpool area): Dr Kathy Cologon

Morning tea support group for parents/carers of babies and children who have Down syndrome. Play Helper provided.

10.00 am - 1.00 pm
Monday 25th October 2010

Guest speaker: Dr Kathy Cologon, Macquarie University, on early literacy and numeracy development in children with Down syndrome

Frank Oliveri Centre, 450 Tantangara St (cnr of Jindabyne St)
For further information please phone Melissa Cotterill on 0418 162 544 or 9825 1973 or email

Reminder of health workshop

Remember to register for the workshop

Physical and Mental Health Promotion for People with an Intellectual Disability - a workshop for families, service providers and other professionals
with CDS on 11th October - bookings close today (5th October)
Phone 8878 0500 email  for further information, or to register.

Don't miss this opportunity to hear from Dr Seeta Durvasula and Rachel Dickson, both of whom work with many people with intellectual disabilities, including Down syndrome, every week.

Flier here.

Monday, 4 October 2010

New York Times special report: A family journey

This series of articles, set up as a blog by the New York Times, tells the contemporary story of an American family whose identical twin boys were born with Down syndrome in March.  Chapter 2, The long road home has recently been published.

Saturday, 2 October 2010

Arabic Dinner Dance - raffle proceeds to DS NSW

Annette who runs Hippy Hippy Shake Belly Dance is organising an Arabic Dinner Dance.

It is her 50th Birthday and everyone is invited. There will be a raffle with all proceeds going to Down Syndrome NSW.

Friday the 8th of October at 8pm.

Golden Nights Restaurant in Bankstown.

The cost is $60 and includes a full Mezza and soft drink.

There will be an Arabic band and performances by some of Sydney.s top belly dancers such as Shiva, Rabiya, Popi and Jrisi. There is a large dance floor and plenty of time to dance.

Contact Annette on 0408 310 960 to book.