Address details

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

Monday, 28 February 2011

NDIS Campaign's response to draft report from Productivity Commission

The Commission has recommended the introduction of a National Disability Insurance Scheme and has outlined a number of recommendations about the way it could operate and be funded.

The report is long and detailed, examining many of the complex issues that must be addressed before the NDIS can be introduced and implemented. As a result it will take some time for us to go through all the detail. In the meantime the key points are:
  • The Commission has accepted that the disability system is "inequitable, underfunded, fragmented and inefficient and gives people with a disability little choice ... a real system for people with disabilities is required." The Commission has therefore accepted the need for reform and for an NDIS. 
  • The Commission has also accepted that the nation must better meet the needs of those people who currently do not receive any or only inadequate support and that their improved support packages would be portable across state and territory borders. 
  • The Commission recommends the introduction of a fully funded National Disability Insurance Scheme with individualised funding to ensure people with a disability and their families are able to exercise greater choice and control about the supports they need.
  • The Commission has also suggested an entirely separate scheme for people requiring lifetime care and support for castrophic injuries. To be known a the NIIS, a no-fault National Injury Insurance Scheme it would draw on the best schemes operating around Australia.
Further analysis and media commentary is on the NDIS website:

Productivity Commission's draft report on Disability Care and Support - links

Here is the link to the Productivity Commission's draft report on Disability Care and Support - it does take a while to download.

Key points are here.

Public hearings for the draft report - registration information is here.

ABC News report is here.

The Australian's news report is here.

The draft report has been released for comment before the final report is tabled in Parliament on 31st July 2011.

The Inquiry's home page is here and lists numerous contacts. Submissions are open until 30th April 2011.

1/3/2011:  A joint press release from Jenny Macklin, The Minsiter for Families, Housing, Community Services and Indigenous Affairs,   Bill Shorten MP, Assistant Treasurer, and Senator Jan McLucas, Parliamentary Secretary for Disabilities and Carers is available here.

More on the Productivity Commission draft report to be delivered today

ABC Radio National covered the draft report on Disability Care and Support to be delivered to Parliament today, in a ten minute segment during the Breakfast program this morning.  Audio available here.

And a second, very plain-speaking article by Sue O'Reilly from The Australian, this weekend is here.

Sunday, 27 February 2011

Chance to show we're willing and able to help

Stephen Lunn, Social affairs writer,  The Australian February 26, 2011

For the millions of Australians living with a disability or caring for someone who is, Monday at 2pm will be a watershed moment.

But the rest of us should be no less interested when the Productivity Commission releases its draft report on Disability Care and Support. First, disability can affect any of us at any time. Second, the hit to taxpayers could be significant if the government pursues the commission's anticipated recommendations.

The report is expected to chart the course to a new national disability scheme, one designed to give people with disabilities appropriate levels of care and support across their lifetime. Part of the new approach may well be a no-fault national disability insurance scheme, the nirvana of the disability sector.

.... read on here for the remainder of this article from The Australian.

Thursday, 24 February 2011

Home and Community Care Program: Fact Sheets about changes from 2011-2012 and Fact Sheets about HACC Service Types

The Home and Community Care (HACC) Program is a joint Australian, State and Territory Government initiative to help people in need. The NSW Department of Ageing, Disability and Home Care administers the HACC Program in NSW. The program helps frail older people and people with a disability who would otherwise be prematurely or inappropriately admitted to residential care to live independently in their own home.

Ageing, Disability and Home Care (ADHC) is committed to ongoing communication with the sector on matters arising from the April 2010 Council of Australian Governments (COAG) decision on national health reforms.

Under the National Health and Hospitals Network Agreement there will be a split of responsibilities for aged care and disability programs at age 65 (age 50 for Indigenous Australians), with the Commonwealth Government to assume full responsibility for aged care services under the Home and Community Care (HACC) Program from 1 July 2012.

 Fact Sheet 1: COAG Age Split outcome - impact on NSW HACC services
As an outcome of the National Health and Hospitals Network Agreement, COAG has established the Commonwealth Government as the level of government with full funding, policy, management and delivery responsibility for a national aged care system. These reforms include a transfer to the Commonwealth of current resourcing for aged care services from the Home and Community Care (HACC) Program.

What is the decision?

The Commonwealth will assume:
a. funding and program responsibility for basic community care services currently provided under HACC for people 65 years or over (50 years and over for Indigenous Australians); and
b. funding responsibility for specialist disability services provided under the National Disability Agreement for people aged 65 years and over (50 years and over for Indigenous Australians).

The States will assume responsibility for:

a. funding and regulating basic community care services currently delivered under HACC for people under the age of 65 (under 50 for Indigenous Australians); and

 b. funding packaged community and residential aged care services delivered on behalf of the Commonwealth for people under the age of 65 (under 50 for Indigenous Australians).

 ..... click here to download the full text of this Fact Sheet (No.1)

Fact Sheet 2: Transition and Planning for NSW Services
Ageing, Disability and Home Care (ADHC) is committed to ongoing communication with the sector on matters arising from the April 2010 Council of Australian Governments (COAG) decision on national health reforms.

Under the National Health and Hospitals Network Agreement there will be a split of responsibilities for aged care and disability programs at age 65 (age 50 for Indigenous Australians), with the Commonwealth Government to assume full responsibility for aged care services under the Home and Community Care (HACC) Program from 1 July 2012.

This Fact Sheet provides information on ... issues which have emerged from ADHC’s initial consultations about the implementation of the reforms.
..... click here to download the full text of this Fact Sheet (No.2)

 Throughout the transition period, ADHC will provide regular updates to stakeholders and maintain information on its website at:

For further enquires, please contact

HACC Services
ADHC provides a number of Fact Sheets about HACC service types, with information abut who is eligible, and how to access services here - scroll down the page to 'HACC service type fact sheets':
  • Allied health
  • Case management
  • Centre-based day care and respite
  • Domestic assistance and personal care
  • Formal linen service and goods and equipment
  • Home maintenance
  • Home modifications
  • Meals and other food services
  • Nursing
  • Social support
  • Transport
 Who is eligible for HACC services? 
  • Frail older people
  • People with a disability
  • Their carers
People can access HACC services in a range of ways, such as:

1. Direct contact with HACC service providers, who will assess eligibility.

2. Through the local Area Health Service or Aged Care Assessment Team (ACAT), who will undertake an assessment and make a referral to the appropriate service provider.

3. Through GPs, other medical practitioners, hospitals, rehabilitation facilities or Commonwealth Carelink. Commonwealth Carelink Centres provide information for older people, people with disabilities and those who provide care and services, and can be contacted on 1800 052 222 or via

Extracted from information provided via the ADHC website, at: 

Wednesday, 23 February 2011

Today I learned something about Down syndrome

From a man apparently unafraid to admit he had something to learn, from just the right teacher  ....

I'm sitting at Starbucks (that's a worldwide chain of coffee shops), checking email, making phone calls, "sipping my triple tall non-fat latte," and thinking about the fact that people with Down Syndrome make me uncomfortable.

My fear is that if I make eye-contact with a Down Syndrome person they will talk to me, I won't understand them, and then I'll feel embarrassed. (Yes Virginia, this phobia is "all about me").

So this particular Starbucks employs a young woman who has Down Syndrome. (I was going say "is afflicted" or "is a victim" of Down Syndrome, but my lack of knowledge of this syndrome leaves me wondering if "afflicted" or "victim" are appropriate descriptions).

The young woman's job is to dust, sweep the floor, clean the display case, bus the tables, and water the plants. She goes about her business with extreme diligence and a broad smile.

So I was sitting there working on a quote for a customer, when my fear became a reality.  The relative quiet of the establishment was broken with the words, "So how are you doing today?"  I glanced up to see the beaming young woman looking right at me ....... read on from The World According to Roger

Monday, 21 February 2011

New and replacement accommodation recently completed

These links are to media releases from ADHC (NSW Dept of Human Sefvices - Ageing Disability and Home Care) and the NSW Minister for Disability Services about recently completed/opened supported accommodation projects in NSW:

New accommodation for people with a disability opens at Warnervale (9/2/2011)

Stockton Centre site to remain in public ownership  (7/2/2011)

New $42m village for people with a disability opens (2/2/2011)

$14 million Lachlan Centre replacement near completion (1/11/2010)

Sunday, 20 February 2011

Dangerous ideas

If you appreciated some of the ideas put forward in the Sunday Telegraph's feature article about people with Down syndrome today, (see earlier post), you might enjoy these too.

Christine Regan writes a column, MY WORD ! (a reflection on people with disability in society) for interaction, a publication of the National Council on Intellectual Disability.

Her most recent column (interaction Vol 24, issue #2, 2010 pp 33 - 38), puts forward a number of .....

Dangerous ideas

Much has been written and said about Sydney’s 2010 Festival of Dangerous Ideas.

Thinkers and commentators ranging from Geoffrey Robertson to Phillip Glover have ruminated on ideas such as “Should the Pope be prosecuted?” to “Parking meters are good!”

I utterly love the concept of dangerous ideas. I found myself wishing I had some.

Then, lightbulb moment, I suddenly realised that I live everyday with dangerous ideas ….. involving intellectual disability. As a risk-taking thrill-seeker, I thought I might share a few…

• Dangerous Idea: People with intellectual disability are really just like everyone else.

We all have different talents, understandings, world views, abilities etc — so do people with intellectual disability. Some of us need more assistance to navigate and negotiate the world, not just people with intellectual disability.

Why is this dangerous? Because it means that people with intellectual disability are no longer “other” or perpetual children. It means their rights to live and participate in the local street, the local shops, jobs and the community are the same rights as mine.

....  this is just the start —  read on here (go to pp 33 - 38) for more of Christine's Dangerous ideas.

Living the Up Syndrome: Sunday Telegraph

Jane Hansen, Sunday Telegraph, 20th February 2011:

On February 11, 2009, Riley Cohen was born into an imperfect world. For all its flaws and faults, his parents are now eternally grateful for one in particular: the pre-natal screening program set up to detect the extra chromosome Riley carried was inaccurate and cleared him of any defects.
.... read on.

Also by Jane Hansen today: Ending fears of risky test

Saturday, 19 February 2011

Big plans for the future

A very encouraging story about a young man with Down syndrome carving out his future in regional Australia:

By Alan Erskine, Mildura Weekly, 10th February, 2011

He might be a trifle inexperienced, but Stuart Chaplin mixes a mean lemon squash. Just the right amount of lemon, soda and ice.

Stuart, 20, is the latest addition to the staff at Mildura Working Man’s Club, a job he secured on his own initiative after successfully completing a two-year TAFE course in work education.

It could be said that he already had a foot in the door, having completed work experience at the Workers while still at school, and staff say they were impressed with his infectious attitude and enthusiasm.

Part-time work is another thing entirely, but Workers CEO John Harlock and club operations manager Jill Fleming said Stuart presented well at his interview, and won the job as a trainee on merit.

...... read more about Stuart and his big plans for the future here.

Friday, 18 February 2011

Tell the Minister and ADHC about our priorities for the implementation of Stronger Together 2

The Minister for Disability Services, Peter Primrose and senior ADHC staff are leading community information sessions around the state during February and March. This provides an opportunity to send a clear message complimenting the general direction of Stronger Together 2 and reinforcing our campaign priorities.

Find the consultation closest to you from the ADHC website (unfortunately some have already happened), and/or post a comment or feedback Online Q&A

Family Advocacy and InControl Australia have launched a campaign to promote the implementation of the Stronger Together2 commitments to Self Directed Support:

Campaign Priorities

Priority 1: Providing all existing and new users of government and non government disability services the opportunity to direct their own support.

We will be looking to ensure that:
  • people who want control over their resources have the opportunity at the earliest time;
  • individualised portable funding arrangements translate into choice, voice and control.
Priority 2: Providing decision making support that is independent of government and service providers.

We will be working to ensure that:
  • the ‘decision making resources’ are independent of government and service providers, able to be accessed easily and give the person with disability control
Priority 3: Transition support for services

We will be working to ensure that:

  •   the voices of people with disability and families are heard in the process of service transformation.
Priority 4: Administrative processes consistent with a self directed approach.

We will be working to ensure that:

  • the Stronger Together goal of “choice, portability and flexibility in funding and supports” means that people have control over how the money is used;
  • government and service provider processes do not intrude into people’s lives; and
  • there is a minimum of bureaucracy and paperwork.
For information about Self Directed Supports: A NSW Campaign

to join the campaign 

Follow the campaign on facebook

Thursday, 17 February 2011

Levy may fund '$11bn disability plan' : Shadow Minister

Parliamentary Secretary for Disabilities Jan McLucas said although the government would not make any commitments about the model of support it would endorse, it looked forward to the Productivity Commission's findings.

Julia Gillard will face another politically difficult decision with the commission expected to recommend this month that the government investigate a levy to fund a universal disability insurance scheme.

One option to fill the $5bn funding gap through a levy would be to add 0.8 of a percentage point to taxpayers' existing 1.5 per cent Medicare levy.

Senator McLucas

"I think it's a valuable exercise that we think about how people with disabilities get appropriate services and that's why we've asked the Productivity Commission to conduct this inquiry," she said.

Despite the Coalition's push against all new levies and taxes, Coalition spokesman for disabilities Mitch Fifield said Labor had been slow to act on disability support.

"Successive state and federal governments have failed Australians with disability," Senator Fifield said.

Wednesday, 16 February 2011

May The King's Speech raise a cry for more school therapists

Kathy Evans, (author of Tuesday's Child) writes about the availability of speech therapy in Victoria, in today's Age and Sydney Morning Herald - she could be talking about New South Wales.

I have my fingers crossed that The King's Speech, which swept the BAFTAs at the weekend, also claims most of the Oscars later this month, and in doing so catapults the importance of speech therapists to the upper echelons of a society inhabited these days by real estate agents and chief executives.
Access to speech therapy for school-age children is pretty hard to come by in Victoria, we are discovering. My partner and I have a seven-year-old daughter with Down syndrome who is wonderfully articulate, but not in a way that always makes sense.

... read the whole article online here.

Tuesday, 15 February 2011

Perry Gilsenan and his family  appeared  on the Kerri-Anne Show (Ch 9) this morning, talking about his daughter Grace, and his motivation to set up the Scrapheap Adventure Ride, to raise funds for Down Syndrome NSW

If you missed it, you can view it here.

Monday, 14 February 2011

Cut disabled pensions to pay for floods: Business Council of Australia

The Business Council says cuts to disability services and foreign aid should be considered as alternatives to the flood levy.

The Federal Government says the $1.8 billion tax is needed to help pay for flood and cyclone reconstruction in Queensland and Victoria.
But in its pre-budget submission, the Business Council, which represents Australia's top 100 companies, says the government should instead press ahead with returning the budget to surplus through short-term spending discipline.
Council president Graham Bradley says all current spending should be reviewed and disability pensions may not be the best use of government money.
"It is one of the large budget items," he told ABC Radio's AM.  ... read the full ABC report here.

And an immediate rejoinder from Senior Australian of the Year and disability advocate, Prof Ron McCallum:

Pension cuts to pay for floods 'not an option'
Senior Australian of the Year and leading disability advocate Ron McCallum has vehemently rejected the Business Council of Australia's calls for disability pensions to be cut to help meet the nation's floods recovery bill.
...  Professor McCallum, the first totally blind person appointed to a full professorship at an Australian university, says cutting pensions to pay for flood recovery is not an option.

"Persons with disabilities have the highest unemployment rate of any group in Australia, save for Indigenous Australians," he said.
"What government should be doing is establishing programs to assist we persons with disabilities in obtaining employment.
"The disability pension should not be arbitrarily cut simply because of the Queensland floods."
Professor McCallum says while he is open to any review of the guidelines for placing people on the disability pension, it is vital those who cannot work are properly supported.
"There is always a case for examining whether persons are appropriately placed upon the disability pension," he said.
"It may be that there may be a case for examining why there are so many people on the disabilities [pension]. There may be some people who should not be there.
"But for all of we Australians who have disabilities, it is important that where we are unable to obtain employment we are given sufficient funds on which to live and support ourselves and our families."
South Australian Dignity for Disability MP Kelly Vincent says the Business Council is wrong to criticise the disability pension.
Ms Vincent says people get a disability pension because of their inability to work.
"People are better off psychologically, physically and mentally being in the workforce, but if that is not an option for you and you then lose the only financial sort of income you have, how is that going to be good for your psychology?" she said.

And a clarification from the Business Council of Australia, received this afternoon:

Thank you for taking the time to contact the Business Council of Australia office today. We have received a number of calls and emails from members of the public understandably concerned by media reports suggesting that the BCA had called for a cut in disability pensions to fund the post-flood reconstruction.

The BCA has issued a clarifying statement to media and to a number of organisations representing people with disabilities.

The statement recognises that the Disability Support Pension forms a vital function in Australia’s welfare system for those who do not have, or have limited capacity, to participate in the paid workforce.
The BCA has not recommended that disability support pensions be cut or reduced to fund the flood reconstruction effort or as an alternative to the flood levy.

The approach to the reconstruction effort recommended in the BCA’s 2011-12 budget submission is that the federal government should focus on reducing or re-sequencing spending on programs that give least value for money.

Longer term, the BCA submission recommends that steps be taken to place the nation’s finances on a more secure footing for the future, including policies that provide opportunities for people who want to work and are capable of working to enter the paid workforce.

Please let me reassure you, and encourage you to reassure others, that the BCA has not suggested that the disability pension should be either cut or reduced. Our position has always been that people with disabilities who can and want to work should be supported in this endeavour, including through incentive structures.

Kind regards
Maria Tarrant
Acting Chief Executive
Business Council of Australia

Scrapheap Adventurer on Kerri-Anne, Tuesday

Be sure to be watching the Kerri-Anne show tomorrow morning (Tuesday 15th, Channel 9) as our very own Perry Gilsenan talks Scrapheap Adventure Ride and his beautiful daughter Grace - inspirational!

New research report: menopause as experienced by women with intellectual disabilities

A Scottish study published in January, investigated what a group of women with intellectual disabilities knew about menopause and asked them to describe their experiences of menopause. The  group included women with Down syndrome.


Background:  Little is known about the menopause in women with intellectual disabilities (ID) save that its onset is earlier than in the general population, and earlier still in women with Down’s syndrome (DS). This study directly explored menopausal experiences in women with ID, both with and without DS, with the aim of identifying levels of knowledge of the menopause and of its health and reproductive implications. Methods Information was collected from 45 women with ID (17 DS, 28 non-DS; age 35–65 years) using a semi-structured interview.

Results:  Menopausal experiences of the women with and without DS were very similar. Most of the women were unaware of menopause-associated changes in their body and few understood why they menstruated. Difficulties in disentangling behavioural consequences of menopausal symptoms from behaviours arising from other causes were evident. A need for better health education training and more accessible health resources was identified.

Conclusions:  Promoting better awareness of menopause-related health issues in women with ID seems warranted. Appropriately-tailored health education materials need to be made more readily available.

The full text of the report is available online - click on the link below:

D. S. Willis, J. G. Wishart, W. J. Muir, Menopausal Experiences of Women with Intellectual Disabilities, Journal of Applied Research in Intellectual Disabilities, Vol 24, Issue 1, pp 74–85, January 2011

Sunday, 13 February 2011

GLEE Club Australia - classes for people with special needs (Sydney)

We are often asked for information about dance classes open to people with Down syndrome.  Kick Performance Group has asked us to pass on this information about their new GLEE Club Australia classes:

KICK Performance Group has been operating for 15 years in performing arts and for the past year have held GLEE Club Australia classes with a great amount of success. We are lucky enough to be the only school in Australia with the GLEE Club syllabus direct from the USA.

We now are looking to offer this all dancing, all singing class to students with special needs.

A little about the classes:

323 Glee Club 2 for Special Needs – years Kindergarten – Year 6
Fri 5.00pm-6.30pm
$215 per term

423 Glee Club 2 for Special Needs – High School and young adult (up to age 21)
Mon 6.00pm-7.30pm
$215 per term

GLEE is a phenomenon sweeping the world and exciting teenagers everywhere. This class is for students with mild- moderate intellectual or physical disabilities to learn basic movements and the joy of dance to fun music all whilst belting out a tune. Designed to build self confidence in a caring, safe environment, develop gross motor skills and understand beats and rhythm of music.

KICK Performance Group

The Australian Institute for Performing Arts
40 Merrenburn Ave Naremburn NSW 2065
P- (02) 9966 5013
F- (02) 9966 5014

(All information supplied by Kick Performance Group)

Saturday, 12 February 2011

carecareers blog link

We've just added a link to the carecareers blog page about Gerard and Maria to our recent update on their roles in the carecareers advertising campaign.

People with intellectual disabilities working in the Australian Public Service

Media release, 10/2/2011 Senator the Hon Jan McLucas, Parliamentary Secretary for Disabilities and Carers

Graduation of FaHCSIA trainees with disability
Four trainees today celebrated their graduation from a pilot program for people with an intellectual disability in the Australian Public Service.

Parliamentary Secretary for Disabilities and Carers, Senator Jan McLucas, said the traineeship program is designed to provide people with intellectual disability with skills and practical work experience to help them gain future employment.

"All four trainees are now permanent staff members at the Department of Families, Housing Community Services and Indigenous Affairs (FaHCSIA), with three working in the National Office and one employed in FaHCSIA’s Perth office," Senator McLucas said.

"These graduates will be an asset to FaHCSIA. They have worked hard throughout the traineeship program, demonstrating their commitment and enthusiasm."

The Department of Families, Housing, Community Services and Indigenous Affairs (FaHCSIA) commenced the 18-month program in August 2009, providing participants with on-the-job training as well as support in completing a Certificate II in Business Administration with Registered Training Organisations

The Traineeship Program for People with Intellectual Disability pilot was developed and supported in partnership with a number of external organisations, such as the Australian Network on Disability, Capital Careers, and Disability Works Australia.

Disability Employment Service providers Advance Personnel, LEAD and EDGE Employment Solutions, and Registered Training Organisations, JCE Positive Outcomes in Canberra, and the Australian Medical Association (WA) in Perth were also involved.

"The traineeship program for people with an intellectual disability is the first of its kind in the Australian Public Service," Senator McLucas said.

"This program reaffirms the commitment of Australian Government and various business organisations to providing opportunities for people with disability who want to make a contribution to the workforce."

Senator McLucas joined Secretary of the Department of Families, Housing, Community Services and Indigenous Affairs, Dr Jeff Harmer, in presenting certificates to the graduates in a special ceremony.

Teacher of the week

A local news service in South Carolina has featured a young woman with Down syndrome as their 'teacher of the week':
One local assistant teacher is living proof that with motivation and a positive attitude there is nothing that can't be accomplished.
"I always tried hard, and I always did my best," said Bryann Burgess, an assistant teacher with a school called Kindermusik.
From day one, the 22-year-old came into this world with an extra obstacle.
"I was born with down syndrome, on August 20th, 1988," Burgess said.

Video and a full transcript of the report are here.

Adult Down Syndrome Clinic's comments on opportunities for people with Down syndrome to teach others.

Friday, 11 February 2011

Special Olympics: Come and Try Days

Sydney Upper North Shore Region
Soccer, Athletics and Basketball
11:00 am, Sunday, 20th February 2011
Oakhill College, Old Northern Road, Castle Hill
Free BBQ Lunch at 1pm
Indoor facilities available in case of wet weather

Should you have any queries please contact Elissa Henshaw on 0403 497 517

Sydney West Region
Wednesday February 16th - come and try

Carnarvon Golf Club Nottinghill Road, Lidcombe
There will be no charge for the Come and Try Day
Regular time, Wednesdays: 4.30 – 5.30pm during daylight saving & school term
If you would like to participate please contact either Cheree Mills 9633 4675 or Denise Frost on 9636 6058 by February 11th

7 pm Friday 25th February
Triglav Panthers Club, 80 – 84 Brisbane Rd, St John’s Park
No cost.
No previous experience is necessary.
Bocce is a great game for all ages.If there is enough interest, this will lead to setting up a regular Sydney West Bocce Program.
Bocce will only be played once a month on a Friday night and the cost will be $2.00
RSVP by 24th February to John Butler
9624 3068 or

New film: Just Like U

Trailer for the film Just Like U, starring Ty Belnap, shot in Queensland, and due for release in June 2011

The film's official website has much more information:, including a link to documentary about Ty Belnap.

Follow Just Like U on Facebook

Thursday, 10 February 2011

Library Thursday

I Know Someone with Down Syndrome, by Vic Parker, Heinemann First Library, 2011

A new addition to our collection for children

Publisher's description: This book introduces readers to what Down syndrome is, how it affects people, and what they can do to be a good friend to someone living with Down syndrome.

Reading age:  4 - 8 years

Would you like to borrow this book and provide a short review?  You must be a member of Down Syndrome NSW to borrow from our library. Email to arrange a loan.

Ear, nose and throat health in children and adults with Down syndrome: a talk for parents

10.00 am - 12.00 md
Saturday 26th March 2011

Dr Phillip Chang: Common and uncommon ear, nose and throat issues in children and adults with Down syndrome
Dr. Phillip Chang is an ear and hearing implant surgeon at Sydney Children’s Hospital and St Vincent’s Hospital in Sydney. Dr Chang serves as the director of the Cochlear Implant programme at the Sydney Children’s Hospital.

Dr Harry Koumoukelis: Getting ready for surgery
Dr. Harry Koumoukelis is a paediatric anaesthetist at the Sydney Children’s and Prince of Wales Private Hospitals. He has anaesthetised over 800 children per year over the past decade and, in that time, has worked very closely with Dr Chang on major and minor ENT surgical conditions.

Lecture Room, Level 4 (escalators from main entrance, which is at Level 3)
St Vincents Hospital
Victoria Street, Darlinghurst
Click here to see parking and public transport options.

There is no charge for this event, but booking is essential.  Childcare is not available.

To reserve a place, contact Down Syndrome NSW on 9841 4411 or email  or book online here.

Download a flyer here.

Wednesday, 9 February 2011

Bodylines: dance, movement and theatre for people with disabilities, Carlton (Sydney)

Bodylines is a movement and theatre workshop integrating young people with and without disabilities, run by Shopfront Contemporary Arts and Performance at Carlton, in Sydney's southern suburbs.

Participants explore dance, drama, voice and storytelling to discover different forms of self-expression. Classes are suitable for young people with medium to low support needs, aged 15-25yrs.

Term 1
Workshops will run for 7 weeks on a Friday afternoon from 4:30 – 6:30pm commencing on Friday 11th Feb – 25th March. There will be a performance showing for friends and family as part of Shopfront’s End of Term performances on 26th and 27th March.
Online enrolment for Term 1

Further information, including links to online enrolment, and dates for Terms 2,3 and 4, visit theatre and performance making page of the Shopfront website.

Phone: (02) 9588 3948
Fax: (02) 9588 6545

88 Carlton Pde, Carlton NSW 2218

Wordless Wednesday

Healthier Lives in the Hunter Forum - 9th March 2011

NSW CID is holding a forum on strategies for improving the health of people with intellectual disability in Newcastle and Hunter Regions.

Date: Wednesday 9th March 2011

Time: 9am – 3pm

Venue: Newcastle City Hall

The day is for:
  • family members and carers
  • people with intellectual disability
  • service providers
Program details, contacts and registration forms are available from the NSW CID website here, in standard or Easy English.

Easy English Courses 2011: February and May

IDEAS and NSW CID have invited Scope Communication and Resource Centre (Victoria) to offer a two day training course in NSW that will provide you with these valuable skills!

We are often told “too many words — not enough pictures” by members and users of our services!
Are you interested in learning how to produce Easy English documents for people you work with?

Details are on the IDEAS blog, (Monday 7th February 2011, under the heading Easy English Courses, 2011

Tuesday, 8 February 2011

Stepping up for Down syndrome: Perry Gilsenan, Scrapheap Adventurer

Perry Gilsenan, founder of the Scrapheap Adventure Ride fund-raiser for Down Syndrome NSW spoke with Carol Duncan on ABC Radio Newcastle this afternoon, about the Ride, his love of motor bikes and the outback, about his daughter Grace, and about his own Life after losing both of his legs in a train accident at 12.

You can hear the 8.30 minute interview here.

Get "on your bike" for Down syndrome - Scrapheap Adventure media release

Monday, 7 February 2011

New web addresses for Down Syndrome Education International and USA

Down Syndrome Education International has updated its web address (previouisly

The international service, based in Portsmouth, UK is now at

and the USA office is at

All of their excellent range of information and services are the same.

Sunday, 6 February 2011

Catching up with Dave .....

If you are a regular reader of this blog, you'll have seen many reference to Dave Hingburger's work, including his daily blog, Rolling Around in My Head.  It's always worth reading, makes you think, sometimes makes you laugh, sometimes stirs you up, but in case you haven't been keeping up over the last few weeks (holidays, floods, cyclones, heat waves might have distracted you), here are four of the best from the last month.  No real previews, but two of them are about people with Down syndrome, and two are not - but they are all relevant.  If you like them, tell Dave via the comments page - he reads them all.

Friday, 4 February 2011

Good luck to James and Mark: Cole Classic, Sunday 6th February

James Caruso and Mark Owen are swimming in the Cole Classic ocean race  at Manly this Sunday.  They are raising funds for Down Syndrome NSW while they do it.

Links to their Everyday Hero pages are here.

Enjoy, good luck, and our very grateful thanks to you both.

(Makaton) Key Word signing group: Wauchope NSW

All welcome, come along with no experience or lots of experience,

You will learn up to 30-40 words each get together  - we sign and sing, Shop and Sign, sign and play games,

First meeting for 2011:
Wednesday 16th February 2011
5.30 pm to 7.00 pm
3 Enterprise Place Wauchope NSW (D & D pool shop)

Feel free to pass information on to friends, family, staff, teachers aides, grandparents,  schools etc
Please email or text confirmation for numbers- please include your personal email address so you don't miss any communications.

Contact: Julie Langeveld  on 0402 729 319 or 6585 3844 or
(note new email address)

Thursday, 3 February 2011

Team MOG supporting Down Syndrome NSW through Tuff Truck Challenge, 2011

TEAM MOG* consisting of Geoff Thompson (Thommo) and Owen Griffis with assistance from staff members at Thompson (Taree) Motor Body Builders Pty. Ltd., friends and local businesses is once again entering Tuff Truck Challenge 2011 to be held at Milbrodale NSW on 8th/9th/10th April, 2011.


1. The crew at Thommo’s still love everything to do with trucks!

2. Any prize/sponsorship money will be donated to Down Syndrome NSW.

Thommo’s middle grandson, Flynn, was diagnosed with Down syndrome a few weeks a^er his birth in March, 2007. The support received from Down Syndrome NSW has been invaluable since then and Flynn’s family would like to assist them with their fundraising efforts in appreciation of this and to help ensure that other families are able to access that same support if and when needed.
One of the things Down Syndrome NSW do is to initiate or support sign language classes. In an effort to ease Flynn’s frustration due to delayed vocalisation he has been learning sign language and it is awe-inspiring to see his confidence in that medium.

All costs associated with participation by Team MOG in this event e.g. entry fee, fuel etc. will be totally covered by Team MOG themselves so that every cent raised through sponsorship will go straight to Down Syndrome NSW.

You can support Team MOG by sponsoring their entry.

Every donation towards sponsorship over $2.00 is tax deductible.

Every donation towards sponsorship $500.00 or over entitles that individual, family or business to free signage on the MOG cab for the duration of the competition.

Cheques can be made out to Down Syndrome Association of NSW.

EFT can be made:
BSB:  062 315   Account Number:  00901136   Account name: Down Syndrome Association of NSW
Credit card donations can be made through the following link:

Can you please email   fax 6551 0823 or phone 6552 5856 your donation details so Team MOG can ensure that all sponsors receive your tax deductible receipts etc.

* Unimog – Acronym from the German full name UNIversal‐MOtor‐Gerat. The Unimog is widely regarded as one of the most capable 4WD vehicles ever produced. Due to their off road capabilities Unimogs can be found in Jungles,Mountains and Deserts as Military vehicles, fire fighting vehicles, agricultural use, expedition campers and even in Tuff Truck competitions or trials.

Wednesday, 2 February 2011

Behaviour and Down syndrome: parent talk online now

Dr David Stein, Devlopmental psychologist, Children's Hospital Boston talks to a parent audience about behaviour and children with Down syndrome, recorded as part of the Allan Crocker Speaker series in December 2010.

Playing to their strengths - at school: for teachers and school personnel

Playing to their strengths - at school
is a workshop identifying the learning and communication strengths of people with Down syndrome, to provide appropriate support in school environments: classrooms, playground and activities.  It is designed for teachers and school personnel.

Thursday 17th March 2011, 9.30 am - 3.00 pm

Rydges Hotel, Rosehill

$99 per person (DS NSW members); $132 per person (non-members)

Morning tea and lunch and GST are included

Prior registration is essential

Enquiries: Down Syndrome NSW on 9841 4401 or email

Registrations close 11th March 2011

Playing to their strengths - at home
is a workshop  identifying the learning and communication strengths of people with Down syndrome, to provide appropriate support at home and in the community.  It is designed for parents and family carers.

Saturday19th March 2011, 10.00 am - 3.00 pm

Rydges Hotel, Rosehill

$44 per person (adult siblings are welcome to attend at no charge)

Morning tea and lunch and GST are included

Prior registration is essential

Enquiries: Down Syndrome NSW on 9841 4401 or email

Registrations close 14th March 2011

This event is part funded by NSW Health under the NSW Carers Program