Address details

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

Thursday, 25 December 2014

Wednesday, 24 December 2014

DanceAbility = Happy

On a 'happier' note, Dance Ability's rendition is a joyful way to prepare for a break ...

'DanceAbility Australia Ltd aims to enrich the lives of children and adults with intellectual or physical disabilities through dance and music in a safe, fun and caring environment. A diverse group of students ranging in age from 6 to 48, they have the opportunity to learn Hip Hop, Jazz, Line and Ballroom dancing.'
Based in Sydney's eastern suburbs.

Down Syndrome Australia's continued rejection for government funding

From Down Syndrome Australia, December 23, 2014:

Ten peak disability organisations including Down Syndrome Australia will be left with no choice but to either close their doors or reduce services, with seven organisations subject to drastic funding cuts by outgoing Minister for Social Services, Kevin Andrews.

Down Syndrome Australia along with nine other peak disability organisations participated in a consortium bid to the government led by Australian Federation of Disability Organisations (AFDO), which today has been rejected. Down Syndrome Australia continues to be rejected for government funding despite people with Down syndrome being a major population group in the disability sector.

Together the ten peak disability bodies represent over 90% of Australians with disability and 83% of the identified disability groups in Australia. The organisations have over 200,000 supporters, including 140 organisations, consumer groups, service providers and carer associations.

Read more by following the link to the AFDO media release.
Statement from President and Executive Director, Inclusion Australia, 24th December 2014
... over the last couple of days there has been a lot of conjecture about the future of Inclusion Australia following our unsuccessful application for funding to the Abbott Government. Our application for funding to represent people with intellectual disability and their families to the Commonwealth Government was not successful – no applications on behalf of people with intellectual disability and their families were! ... Inclusion Australia has always been a constructive partner in the development and implementation of Commonwealth policy and while this decision is disappointing it will not silence us from ‘having a say’ in the welfare reforms that will dominate 2015 and ongoing development of the NDIS ...

Tuesday, 23 December 2014

People with Down syndrome in the media

Hands Across the Water on Facebook
Check the post from tosay (23rd December) for an update on baby Gammy, who is having his first birthday today.

More than 80,000 sign petition against deportation of man with Down's syndrome
Get West London, 16th December 2014
Supporters of Wadih Chouery yesterday presented an 80,000 signature petition against his deportation to Lebanon, where his family claim he would face abuse because he has Down's syndrome ... More than 80,000 people have signed an online petition on the campaigns website 38 Degrees demanding he be allowed to remain in the UK, where he has lived since leaving Beirut 17 years ago ...

Oscar Forman shoots hoops with Wollongong Hawks fan Caleb
Mitch Jennings, Illawarra Mercury, 17th December 2014
The Hawks' 3-12 start to the season may have tested the resolve of fans, but the faith of 11-year-old Caleb Jordan has never wavered. Caleb, a member of the KidzWish sports academy program, celebrated his 11th birthday on Friday by draining a few shots on the WEC floor at three-quarter-time in the Hawks' 82-77 victory over the Kings. He impressed the crowd with his prowess and on Wednesday shared a few shots with another sharp-shooter in his idol, Hawks captain Oscar Forman ...

From passion to paycheck
Jessie, VATTA, 15th December 2014
I always wanted to be a dancer ...  this was my journey to find myself. And now, I’m 24, soon to be 25. I am a professional dancer! I get paid to teach and to perform ... (reposted from Weekend reading ... because it deserves to be widely read).

Down syndrome students excel in new math teaching program in Canberra and Victoria
Claire Colley, Sydney Morning Herald, 14th December 2014
Maths is the most difficult school subject for 13-year-old Annie Lee, but thanks to a revolutionary new approach to teaching maths to people with Down syndrome it's now also her favourite ...

Having an ability to overcome disability
St. John Barned-Smith,, 14th December 2014
Ezra Roy waited underneath the glare of the arena lights Saturday with 800 other students from Texas Southern University. He wore the standard-issued cap, gown, mortar board and liberal arts sash. It was graduation day, and the 26-year-old would receive his bachelor's degree in art, Magna cum Laude ... Three days after his son was born, a doctor announced that the premature baby also had Down syndrome ... While the young man sat with his classmates, eagerly waiting for the ceremony to get underway and to receive his diploma, Alvin Roy savored the moment ...

End of year news and publications

NSW Council on Intellectual Disability, 22nd December 2014
As 2014 comes to an end NSW CID wanted to give you an update on our news.
NSW CID has kept having a strong voice about issues that are important to people with intellectual disability ...

National Disability Insurance Scheme December 2014 Newsletter

Family Advocacy Communiqué December 2014

Community Sector Funding Cuts Begin
ProBono News Australia, 23rd December 2014
A number of peak bodies and advocacy groups have learned that they have been defunded as part of the $240 million budget cuts to social services - two days before Christmas. The Australian Greens said Not for Profits have told them that services are receiving calls informing them of the cancellation of funding, in some cases with very short effect ...

Rick Morton, The Australian, 22nd December 2014
... The budget-saving measure aims to haul back tens of millions of dollars by streamlining the number of representative bodies in the two sectors. In the disability arena most condition-specific bodies like Blind Citizens Australia — which lost $190,000 — and two deaf groups, the Disability Advocacy Network Australia and Brain Injury Australia all had their funding revoked.

People with Disability Australia, First Peoples Disability Network, Children with Disability Australia and some other “cross-disability” organisations won funding ...

... The Australian Federation of Disability Organisations, which hoped to survive as a consortium for all condition-specific representative bodies also lost its funding ...

Why the NIS Makes Economic Sense, 
Every Australian Counts, 22nd December 2014

Monday, 22 December 2014

Attitude TV series: 27th December debut

Attitude Foundation is partnering with award-winning production company Attitude Pictures to
deliver 26 documentaries about people with disability for ABC television.
"As a person with disability and having been the Disability Discrimination Commissioner for eight and a half years, I know the importance of telling compelling stories about disability when engaging with the community." Graeme Innes AM
The documentaries are part of an international series that has screened in 26 countries. The documentaries will focus on compelling stories told with insight and understanding.

Attitude debuts on ABC TV 1 on Saturday 27th December at 6.30 pm

Down Syndrome Australia Surveys - the NDIS and people with Down syndrome

Many members of state and territory Down syndrome associations have questions and concerns about the National Disability Insurance Scheme (NDIS) and how it works for people with Down syndrome of all ages.

To be the best voice we can for the Australian Down syndrome community, we'd like to hear from you about your experiences with the NDIS, or (NDIS/NDIS My Way in WA) so far, and any thoughts, questions and concerns you may have. 

Your answers will also help DSA and the state and territory associations develop resources and tailor supports to help you, so please provide as much information as you can.

There are two surveys to choose from, available online until 16th January 2015:
1. For people not yet in NDIS
2. For people already in an NDIS or My Way trial site (WA)
You don't have to be a member of your local association to take part.

Saturday, 20 December 2014

DS NSW office closed for holidays

Down Syndrome NSW would like to extend to you our seasons greetings and wishes 
for a prosperous New Year.

Please note our office will be closed from Friday 19th December 
and will reopen on Monday 12th January 2014.

We will continue to provide emergency support and assistance for new parents throughout the holiday break. Please contact our office on 9841 4444 and leave a message in this instance.

Thank you for your support this year and we look forward to our continued association in 2015.

Friday, 19 December 2014

Weekend reading viewing: 20th - 21st December 2014

The Upside of Down Syndrome
Daniel Allott, National Review Online, 17th December 2014
... “Mock my pants, not my sister” provides a glimpse of the passion with which Skotko advocates for his sister and all people with DS. But Skotko is much more than an advocate. He is also one of the country’s leading medical clinicians, geneticists, and Down-syndrome researchers.

The goal of his work, as he explained it to me when I visited him at Massachusetts General Hospital, is to make “tomorrow better than today” for people with Down syndrome. Put another way, Skotko is using his extraordinary talents to help move society beyond mere tolerance for people with DS and toward a celebration of them ...

Enjoying: December
Kelle Hampton, Enjoying the Small Things, 15th December 2014
Kelle Hampton is well known for her beautiful photographs and her blog that mostly focuses on her children, including four year Nella, who has Down syndrome. Here is another excellent post, about December in Florida - enjoy all the photos (she's a professional), and be delighted by the comments, that you might well relate to from your own family's everyday doings, but make sure you scroll down to the very last one of Nella, about which Kelle wrote on her Facebook page ... 'This face. How I want to live life.'

Why My Son Doesn’t Care About Christmas 
Anne Penniston Grunsted, Role Reboot, 16th December 2014
... I think of Bobby as having a thick layer of insulation between him and the world. The insulation slows his reaction time, makes it more difficult for his inner thoughts and actions to express themselves to the rest of us. And it makes it more difficult for the information of the world to reach him. This insularity is a challenge when teaching him vocabulary or reading or math. What another child might understand in four or five repetitions may take Bobby 500 repetitions to learn.

But the insulation that makes it more difficult for useful information to reach him also makes him immune to much of the toxicity that seeps into the rest of us. Because he processes less than the typical person, the standard of what gets through is higher—to resonate with my son, information must add intrinsic value to his day to day happiness ...

To the Woman Who Asked to Take a Closer Look at My Daughter With Down Syndrome
Maggie McKelvey, The Mighty, 16th December 2014
... I felt like a huge weight had been lifted. We would be OK. She would be OK. This woman gave me strength to start to raise my daughter to do and be anything she wants ...

Kat Abianac, Parker Myles, 16th December 2014
... children who may fall within certain demographics can easily be under-represented. And that’s not fair, or just. All our beautiful children, without exception, deserve opportunities like these ...

From passion to paycheck
Jessie, VATTA, 15th December 2014
I always wanted to be a dancer ...  this was my journey to find myself. And now, I’m 24, soon to be 25. I am a professional dancer! I get paid to teach and to perform ...

Orange Juice Flavour Sky, 13th December 2014
Emily is a list girl ... Last year, Emily’s Christmas List contained such treasures as a nest, a carpet, Ant & Dec and some spinning plates – a fairly eclectic collection of wishes I’m sure you’ll agree. So I waited in eager anticipation of this year’s Christmas list. What could she be after this time? – a newly seeded lawn maybe?, a pair of curtains? or perhaps a cutting from Demis Roussos’s beard? Whatever it is, how on earth could she top last year’s wish list?

I grieved at first for the son I dreamed about while I was pregnant
Kat Abianac, MammaMia, 12 December 2014
Dear Elly - I consider us friends. I’ve known you for quite a while, long before your beautiful newborn Rex was born last week. The day he was born, however, we suddenly had a LOT more in common. Because Rex was born with Down syndrome, just like my toddler Parker ...

Jean-Pierre Crépieux receives the French Legion d’honneur
L'Arche International, 8th December 2014
On Monday December 8th, Jean-Pierre Crépieux will be the first person with an intellectual disability to receive the Legion d’Honneur, France’s highest honour. Established in 1802 by Napoleon Bonaparte, the Legion d’Honneur rewards “personal merit in the service of the nation.” Jean-Pierre is being recognised for his contribution to L’Arche and the social development of men and women with an intellectual disability ...
Photos of the occasion are on the L'Arche Facebook page, here

ABC News Special: Stella Young Memorial
ABC iView, 19th December 2014
Today's memorial service for the late Stella Young - writer, broadcaster and comedienne who did much to help Australians understand disability issues. Melbourne Town Hall, and broadcast to Federation Square. Available online until 18th January 2015. 81 mins

Dance in 2015 - southern suburbs Sydney

Tamara Gordon is the principal of TK Dance Stars at Ramsgate in Sydney's south. Her school is looking to hold accessible classes in 2015, including tap, jazz and ballet. She is a member of the Australian Dance Asssociation.

Interested families should contact Tamara so that she can schedule classes.

Contact: Tamara Gordon
M: 0403 899 924

Thursday, 18 December 2014

New resources: online, a film, a book

'Disability Standards for Education: A Practical Guide for Individuals, Families and Communities' 
University of Canberra -  Education Institute, 2014
A free, web-based resource  about rights, reasonable adjustments, what’s fair, and working together with schools through stories, videotapes, resources, glossary, facts sheets and interactive questions.

The Interviewer 
The multi-award winning 2012 short film, The Interviewer, made by Australia's Bus Stop Films, continues to impress audiences internationally.  One of its stars, Gerard O'Dwyer, has recently been in Russia promoting it at an international film festival, and it has recently been well received in Germany:
It shows that inclusion and the rights of people with disabilities are topics that can be addressed by challenging, rather than affirming, stereotypes.
The Interviewer is now available through Sproutflix to purchase on DVD or by downloadAll proceeds from sales go directly back into Bus Stop, a  not-for-profit organisation making inclusive films. You can also enquire at Bus Stop about ordering a DVD directly from them.

When Mum and Dad Separate
Another title in the art therapy series Drawing Out Feelings. These books are designed to provide parents, educators and counsellors with an organised approach to help children cope with grief from family loss and change.

Available to purchase from the Kids Health bookshop - the information and resource centre of The Children's Hospital at Westmead.

Archiving Project
Our archiving project continues on a weekly basis in the office. Do you have any old photos from Down Syndrome NSW events that you would like to send to us? Please do so.

Send print material to
Down Syndrome NSW
PO Box 107, Northmead 2152

or digital material to the library via email:

Wednesday, 17 December 2014

Mental health funding for people with intellectual disbaility queried

Health advocate Jim Simpson's letter to the editor, Sydney Morning Herald today:
Most needy left out 
There is a glaring gap in the NSW government's "once in a generation overhaul of mental health services" ("Community to be focus of extra $115 m in funding", December 16). The government's response makes no mention of people who have both an intellectual disability and a mental illness. These 60,000 people have poor access to mental health services. Diagnosis and treatment of mental illness is challenging because of the interplay of conditions. Mental health services lack skills and tend to say, "It's just behavioural, not our responsibility". 
The needs of this group have been well stated by the Mental Health Commission. The government says the commission's report is a "10-year roadmap for strengthening mental health care in NSW". But the government's action plan does not mention people with intellectual disability. It must now put them on the road to action.

Jim Simpson NSW Council for Intellectual Disability, Surry Hills 

Further information on the provision of mental health services for people with ID in NSW:

Looking for Netballers in 2015

West Ryde Rovers netball club would like to include young women with intellectual disability in next year's netball competition. They will play at Meadowbank on a Saturday afternoon.

The team is keen to recruit interested members. Players must be over the age of 14. No previous experience is necessary

The team will train one evening a week (to be arranged with the coach). Karen Hester will be coaching and is the person to contact for more information: mobile 0413 588 896

Tuesday, 16 December 2014

Down syndrome organisations funded for NDIS capacity building project

Excellent news for people with Down syndrome and their families in the lead up to the full implementation of the National Disability Insurance Scheme:

Down Syndrome NSW, Down Syndrome Victoria, and Down Syndrome WA have been named among the grassroots organisations funded by the National Disability Insurance Agency to act as Disability Support Organisations, in the first stage of the DSO project.
Each DSO will work with people with disability and their families and carers to make the most opportunities presented by the NDIS and engage effectively with the scheme.
Each DSO will facilitate and support up to 20 local peer support or mutual support groups. The support groups will provide information, resources and build community networks between participants and with others. The type and structure of the local support groups will be determined by DSOs in consultation with the NDIA. 
Local support groups will respond to local needs, conditions and circumstances. The goals of the local support groups will be to build the capacity of people with disability and their families to: 
  • Exercise choice and control
  • Effectively engage with the NDIS
  • Effectively engage with mainstream programs, services and activities
  • Increase opportunities for independence, self-management and community inclusion
Other organisations funded as DSOs are listed on the Australian government's NDIS webpage, here. 
Details of how the program will work within each organisation will be announced shortly.

NDSC Convention 2015 - Phoenix, Arizona

Families from all over the world are welcomed at the (US) National Down Syndrome Congress's annual convention - something to consider if you are planning on being in the US in June. Programs cater for parents, professionals, siblings and people with Down syndrome:
Each year, thousands of people from across the globe attend the National Down Syndrome Congress Annual Convention. For most, it’s to hear the latest information from world-renowned experts. For others, it’s a great vacation. But, for nearly all, there’s the one-of-a-kind NDSC family reunion feeling that permeates the convention weekend.

43rd Annual NDSC Convention 
25th - 28th June 2015

JW Marriott Desert Ridge, Phoenix, Arizona

Convention Registration will open March 2015 

You can check out the 2014 Convention in the current issue of the NDSC's Down Syndrome News, here.

Monday, 15 December 2014

Commonwealth doctors to assess new DSP claims

We will be interested to hear how/whether this change affects people with Down syndrome who are applying for the Disability Support Pension after 1st January:

Commonwealth doctors to assess new DSP claims
The Hon Kevin Andrews, Minister for Social Services, 12 December 2014
Joint Media Release with: Minister for Human Services Marise Payne

Social Services Minister Kevin Andrews has announced Australian Government-contracted doctors will assess new claims for the Disability Support Pension from next year to achieve consistency and equity across the country.

"This measure, which starts on January 1, is not aimed at those who may never be able to work but rather people who can work with independent advice and the right support,” he said.

“The Government is committed to maintaining a safety net for those who cannot support themselves but many others remain on the pension longer than they need to.”

Mr Andrews said the measure follows other changes to the DSP, which uphold the integrity of the welfare system and ensure support goes to those who need it.

“Another recent change to the DSP has included compulsory participation activities for people aged under 35 who can work for more than eight hours per week.

“This measure has already helped thousands of DSP recipients to engage with Job Services Providers with the view to getting back into the workforce.”

Last financial year the Department of Human Services investigated 411 people for dishonestly claiming DSP, which resulted in $9.5 million in raised debts.

Minister for Human Services Marise Payne said the Government is committed to protecting the integrity of the welfare system.

“This change will ensure support goes to those most in need,’’ Minister Payne said

Friday 12 December 2014

People with Disability Australia (PWDA) is shocked at the announcement by Minister Andrews today that from 1 January 2015, only government contracted doctors will assess new DSP claims. PWDA agrees that if there are issues of fraud in the system then these should be dealt with appropriately, but this should be achieved using the existing mechanisms rather than by attacking the DSP assessment process.

If some form of independent oversight of assessments is necessary then PWDA is open to consultation on what that may involve. However, “the medical opinions of doctors who have existing relationships with people with disability should not be discounted in the assessment process,’’ said PWDA President Craig Wallace.

“Many people with chronic illness or psychosocial disability can present well one day but have debilitating symptoms the next, which is why a one-off assessment by a person who doesn’t know the recipient isn’t comprehensive.”

This approach also undermines the integrity of thousands of GPs who undertake DSP assessments every year.

Any changes to the DSP should be made after consultation with people with disability and take a holistic approach towards employment and income support. It’s a concern that this announcement has been made without consultation and without waiting for the outcome of the McClure review into Welfare Reform.

“What we need is a jobs plan to support people with disability into genuine employment,” said Mr Wallace. “We don’t need the involvement of more doctors, and we don’t need more inquiries into the barriers to employment for people with disability. We already know what the problems are. As I keep saying, what we need is a focus on jobs.”

“People with disability are sick and tired of being called dishonest rorters who need to be weeded out of the welfare system,’’ continued Craig Wallace. “This type of labelling by the media is stigmatising and unhelpful. Calling us names won’t create more jobs and opportunities, but it will make us feel undervalued, as if we need to justify our circumstances; we do not!”

PWDA also criticises the timing of Minister Andrews’s announcement. With the holiday season around the corner this should be a time for people to relax and spend time with their loved ones. Instead, for many people with recently acquired illness or disability the next few weeks will be an anxious time, with many concerned that come January there will be additional hoops to jump through in order to prove their DSP eligibility.

“This Minister’s habit of announcing cost saving measures targeting the vulnerable at festive times of year is disappointing,” said Mr Wallace.

Memorial service for Stella Young - in Melbourne, and live broadcast

Stella Young Public Memorial Service Broadcast
Rejoice in the life, achievements and legacy of comedian, journalist and disability Stella Young with a live broadcast of her memorial service at Fed Square (Melbourne).

The official celebration will be held at the Melbourne Town Hall and following the service, Stella’s life and work will be further honoured on Fed Square’s Big Screen. The service at Melbourne Town Hall is open to everyone and admittance will come on a first come, first served basis. Doors will be open from 9.30am for an 11am service. 
Both venues are fully accessible and a special invitation is extended to people with disabilities. People from Stella’s home-town of Stawell are also extended an extra heart-felt and warm welcome. 
The service will also be broadcast live on ABC News 24 and on digital radio 774 ABC Victoria. 
The dress code is CRIPTASTIC – red and white spotted shoes, bright colours and little to no black. Pink or purple hair is a definite bonus, as are the incorporation of chenille stems.
Where: The Square + Big Screen 
When: Friday 19 December, from 11am 
Price: Free

Friday, 12 December 2014

Weekend reading and viewing: 13th - 14th December 2014

One-on-One with a Leading Down Syndrome Expert
Daliah Singer, 5280 (The Denver Magazine), December 2014 issue
Dr. Dennis McGuire on how perceptions of adults with Down syndrome have changed ...

Looking for Alice
Sian Davey
This series is an illustration of family life - all the tensions, joys, ups and downs that go with the territory of being in a family ... My daughter Alice, born with Downs Syndrome, is no different to any other human being. She feels what you and I feel ...

And Holland has Tulips
An interactive photo essay by Lani Holmberg

The pioneers who first got jobs outside sheltered workshops
Anna Patty, Sydney Morning Herald, 12th December 2014
Anna Chan has never considered herself a pioneer. But her decision 30 years ago to look for a job in the open labour market, bypassing the traditional path to a sheltered workshop, has earned her that recognition. Ms Chan, who has an intellectual disability, began work at a childcare centre in Concord in 1984 and today is one of its longest-serving employees ...

Stella Young's untimely death last weekend has prompted tributes nationwide, and internationally, within the disability and wider community. A public memorial service will be held in Melbourne, next Friday (19th December). Some links were posted earlier in the week. Here is a small additional selection:
Finding a legacy worthy of you … Craig Wallace, On the Record, 10th December 2014
Almost two days after learning of the death of Stella Young I’ve been slowly starting to think about how on earth we find a “legacy” worthy of her. It’s hard, so very hard, to think about the idea of a legacy for someone as vital and alive as Stella. Just as I can’t bring myself to use the pre-fix “the late” when talking about her ... 
Don't bugger off now: we need you, Graeme Innes, Howzat, 10th December 2014
... I would have loved her to write my eulogy. I never expected or wanted to write hers. “You can’t bugger off now: we need you.” ... 
The legacy of Stella Young, Australian disability advocate and comedian Elahe Izadi, Washington Post, 8th December 2014
... Young often spoke about how life in her body was not all that different from the lives lived by others without osteogenesis imperfecta; it was the way the world responded to her disability that made it challenging ...

People with Down syndrome in the media

When Suzie Barry came into Jason Ward’s tattoo shop the first time, she knew exactly what she wanted and he knew better than to turn her away. He gave her the tattoos she requested and she was on her way …

This story has been all over the online disability community this week - here is another report:
An Artist Who Wrapped and Bound Her Work, and Then Broke Free
Lawrence Downes, New York Times, 1st December 2014
... Ms. Scott had no formal training, no education to speak of, could not hear or speak and had Down syndrome. Her work exists without explanation, even as to how it should be displayed. Right-side up or down is a curator’s assumption. Every one of her 200 or so pieces is “Untitled.”

The art world does agree that the works are superb. They are shown around the world, the subject of articles, books and films ...

Down's syndrome bowls snub brothers play with England team
Hull Daily Mail, 4th December 2014
... the brothers were told they could not join the Elloughton Short Mat Bowling Club when they visited in October. After members of the English Short Mat Bowling Association (ESMBA) found out about their story, they invited them to the British Championships, held in Wales ...

Leslie Merchant, Thurston Talk, 18th November 2014
What’s your dream? Are you living it today? If you are like me, you probably have it stored up on a shelf in your “someday” closet. I recently met a young man named Dylan Kuehl who lives his dreams every day. Dylan is 31-years-old, and a quick look at his resume makes me feel like I have some serious catching up to do ...

Florida fighter with Down syndrome finally achieves his dream
Damon Martin, Fox Sports (Haymaker blog), 15th November 2014
All Garrett Holeve wanted was a chance to fight. The 25-year old Florida native battled for more than two years for the chance to step inside a ring or cage and live his dream to compete in a mixed martial arts fight. The thing that stopped Holeve from being sanctioned in his home state is the very perception he was fighting against by getting involved in MMA in the first place. Holeve was born with Down syndrome ...

Thursday, 11 December 2014

Human Rights Award to CEO of First Peoples Disability Network

Congratulations to Damian Griffis (chief executive of the First Peoples Disability Network Australia and a leading advocate for the human rights of Aboriginal and Torres Strait Islander people with disability) who was awarded the 2014 Tony Fitzgerald Memorial Community Individual Award at the Australian Human Rights Awards in Sydney last night.

First Peoples Disability Network also received the Improving Advocacy and Rights Promotion Award at the 2014 National Disability Awards in November:
The First Peoples Disability Network (Australia) is a unique organisation. It is the only nationally constituted organisation governed by Indigenous people with disability in the world, and has been integral in raising the profile of the unmet needs of Aboriginal and Torres Strait Islander people with disability ... International Day of People with Disability Australia, 2014 National Disability Awards citation

Kids at the House 2015

Sydney Opera House's Kids at the House program for 2015 has been released.

Some events will be designed to accommodate children who might have difficulty with too much, light, sound, sitting still  - an adaptation that has been very popular ... keep an eye on the web page for additional events throughout the year. In addition to shows, tours and learning experiences are listed.

Wednesday, 10 December 2014

News and commentary on/from the NDIS (27)

National Disability Insurance Agency quarterly reports

EveryAustralian Counts
Revisit the Every Australian Counts campaign website - it has been overhauled, with easier navigation and updated information links.

The latest call for action in the campaign is to have a timetable for the full rollout revealed:

NDIS: See it through, 9th December 2014

The full rollout of the NDIS across Australia is due to start in most states and territories in July 2016 and be complete by 2018 or 2019. (You can see the details of your state or territory here). 
There is still a lot of work to be done to make sure the 460,000 people with disability will get the supports and services they need within that timeframe. 
But, there is no comprehensive strategy for the full NDIS rollout. There is no specific timeline for delivery. There is no schedule for who will get it next, and who will get it last. 
People with disability and their families and carers have waited a long time for the kind of support the NDIS will bring. They are holding out to know when it will be their turn. 
This Friday, 12 December, is the Ministerial Council on Disability Reform - all the state and territory Ministers for disability services will be there. This is our chance to get their ear on this issue ... click here for details of what you can do.
Hell will have no fury like mine: NDIS Senator Fifield warns states
Chris Uhlmann, AM (ABC Radio), 9th December 2014
The National Disability Insurance Scheme (NDIS) is designed to revolutionise disability services and, in theory, allow families to be in charge of what they need. Trials are underway and AM has been told some parts of the system are not coping. There's growing concern that state and territory governments are withdrawing support before some trials even begin, leaving people with disabilities in limbo. The man charged with running the Commonwealth end of the scheme work is the Assistant Minister for Social Services, Senator Mitch Fifield ...

Disability services axed as providers jump the gun on NDIS
Rick Morton, The Australian, 8th December 2014
An urgent investigation into the loss of disability services amid the slow development of a national insurance scheme needs to take place as reports emerge of people losing support years before they will be covered by the new program.

Mal Brough, the chairman of parliament’s joint standing committee on the National Disability Insurance Scheme, told The Australian there was evidence of state and territory systems abrogating their responsibilities to deliver disability services even in jurisdictions not yet trialling the scheme ...

Should ADHC Close?
NSW Council for Intellectual Disability (blog) 2nd December 2014
There is considerable community concern about the NSW Government’s decision to close ADHC as the NDIS is rolled out in NSW.  Families have been saying to NSW CID that they have fought hard to obtain quality ADHC services and that they should have the choice to keep these. They point out that the NDIS is about choice and control ...

Indigenous still waiting for disability service
Rick Morton, The Australian, 2nd December 2014
... The rollout of the $28 billion (National Disability Insurance) scheme risks “making all the same mistakes” that have locked indigenous Australians out of the health and social support systems, according to a former NDIS planner and national operations manager of the First Peoples Disability Network, Andrew Fernando ...

Calls to give NDIS spending buffer
Rick Morton, The Australian, 30th October 2014
The national disability insurance scheme will become unsustainable if it expands faster than the market that is meant to service it, leading to significant inflationary pressure on prices, the scheme’s actuary says. The report from the actuary, contained in the first annual report for the NDIS released yesterday, was backed by Australian Government Actuary Peter Martin, who wrote to chairman Bruce Bonyhady earlier this month ...

Rachel Browne, Sydney Morning Herald, 29th October 2014
The National Disability Insurance Agency underspent its budget by $18 million in the 2013-14 financial year, driving savings by reducing formal support in favour of "informal support" provided by family and community members ...

What a fantastic day we all had at Showoff Arts Festival!

Thanks to everyone who came along and especially to the performers, exhibitors and workshop-goers, who helped make the day fun for all.

If you were inspired by anything you saw and you would like to find out more, contact our wonderful contributors that donated their time time to make Showoff a success (click on the links below and it will open either a website or email).

Performance Groups Once Upon a Time Theatre
Lisa Williams Dance Studio
The Joan Access Ensemble

James Penny
Winston Hills Public School 'Magic Movers'

Exhibiting Artists Northside ARTES Studio
Fraser Pollock
Digby Webster

Josie Webster
Emma Brodie
Nina Gotsis

Workshops Beyond the Square
Learn Cajon
Flamenco Dance
The Arcade Circus

Sydney City Discotheque - James Vantol

Bus Stop Films
Restless Dance Theatre
Dirty Feet
Closer Productions

Junction House Band

Parramatta City Council
Lions Club Parramatta
Snap Printing
Riverside Parramatta

Seacost Films
Jenny Moxham

We hope you all enjoyed the day and are feeling excited about the different avenues available in the the community to help you express and grow your creativity.

Thanks for being a part of a great day!

Down Syndrome NSW acknowledges the support of Parramatta City Council in making this event possible. The event is in association with STARE Fest. 

Tuesday, 9 December 2014

Down Syndrome NSW webinar tomorrow - you can still register today

Final reminder about the Down Syndrome NSW webinar scheduled for tomorrow, Wednesday 10th December 2014:

Practical Considerations - Starting Kindergarten in 2015
Information for parents and carers
Do you have a child starting School in 2015? Judy and Catherine will be presenting practical ideas and strategies to assist your child's transition into kindergarten.
Practical Considerations - Starting Kindergarten in 2015 will provide information for parents on:
  • Practical considerations when preparing your child for school AND preparing the school for your child
  • Useful resources for parents and teachers
  • Registrations are essential for these online presentations and numbers are limited.
To register for Practical Considerations - Starting Kindergarten in 2015 please click on one of the following links:
Wednesday 10th December 2014  - 10 am
Wednesday 10th December 2014  - 1 pm
For more information or if you have any questions please feel free to contact Judy Davidson or Catherine Pedler on 9841 4401.

Working lives

People with Down syndrome quietly demonstrate their commitment to their jobs, and their desire to work, everyday. Here are two instances of people who are doing it in a more public way this week:
  • Australian Young People’s Human Rights Medal nomination
Nathan Basha has been nominated as a finalist for an Australian Human Rights Award. Finalists were shortlisted from 29 nominations from across Australia  for the category of Young People’s Human Rights Medal.  His nomination citation reads 
Nathan Basha for his tireless commitment to improving the life experience of people with disability, particularly promoting equal opportunity in employment.
The awards will be presented tomorrow evening (10th December) at the Museum of Contemporary Art, in Sydney.  
Good luck Nathan, and congratulations on your well-deserved nomination.  Have a wonderful evening.
Matthew, VATTA, 8th December 2014
... It all depends on your job and your schedule. Having a job where your schedule changes each day can be hard, but ... Your boss might be watching you and they love to see how hard of a worker you are ...
This is the first in a series of VATTA (Voices at the Table Advocacy - a committee of the Canadian Down Syndrome Society) blog posts on a 'working life' - we'll be watching out for the rest of the series with great interest.

Monday, 8 December 2014

Stella Young

In 2012, the Sydney Morning
named Stella as one of
its '20 most influential women'
Very sad news this morning that Melbourne writer, comedian and activist Stella Young has died unexpectedly at 32.

We have enjoyed and learned from so much of her work, her insight, her willingness to address difficult matters, her wit, her uncompromising integrity, her ability to challenge discrimination wherever she found it - she will be very greatly missed.

Our thoughts are with her family, friends and colleagues.

IDPWD wrap

International Day of People with Disability provides a focus for hundreds of events and speeches, words written, awards presented, rights recognised, problems highlighted and celebrations held around the world ... here is a small selection to indicate the range of activities and thinking about IDPWD 2014:

Theme: Sustainable Development: The Promise of Technology
United Nations - Enable website.

International Day of People with Disability 2014 (audio described video 3m 58s)
Adelaide City Council
Adelaide City Council is pairing up with Access2Arts to celebrate International Day of People with Disability, this December 3, 2014. Marking the adoption of the United Nations Conventions on the rights of people with disability, the day celebrates the achievements of people living with disability and the work of organisations, businesses, government and the community in breaking down the barriers to an accessible and inclusive society.

Australian Human Rights Commission, 3rd December 2014
Disability Discrimination Commissioner Susan Ryan has marked International Day of People with Disability by celebrating the valuable contributions people with disability make in business, government and the community. Commissioner Ryan called on all employers across Australia to play their part in enhancing workforce participation of people with disability.

“This year’s theme is technology, and fittingly so. We live in a technological age and for people with disability these advancements enhance their already clear employability,” said Commissioner Ryan ...

Indigenous Australians can take pride in disability policy gains
John Gilroy and Nicholas Biddle, The Conversation, 3rd December 2014
International Day of Persons with Disabilities (IDPWD) ... is important for commemorating the successes and efforts of the disability rights movement. Along with other Indigenous peoples worldwide, Aboriginal and Torres Strait Islander peoples have much to celebrate ... While many challenges remain, we do have reasons to celebrate ...

Information technology for people with Down’s syndrome
European Commission (Digital Agenda for Europe), 2nd December 2014
This article explains how ICT can help people with Down’s syndrome become more independent in their daily lives. It is about an EU research project (POSEIDON), developing visual and touch apps.

Many people with Down’s syndrome (DS) face barriers to taking part in community activities the rest of us take for granted. Whether it’s travelling on public transport, paying for items in a supermarket or getting to appointments on time, they may need help if they get into difficulties ...

It's probably better ...
Inky Ed, 3rd December 2014
“So, how big will Mac get when he grows up?” came the query from two of his 6th grader friends, J1 and J2. “ ‘Cause we move him from his wheelchair to his jogger now you know,” they added.

Think about that for a moment … their motivation for this knowledge comes from the fact they’ve taken it upon their 11 and 12-year-old selves to lift and shift Mac to whatever chair he wants to be in. And, more importantly, obviously plan on lifting their mate when they are grown ups – they just want to know how big he’s going to be so they know they’ll be strong enough.

International Day of Disabled Persons
Dave Hingsburger, Rolling Around in My Head, 3rd December 2014
... I will go, this morning, to the celebration at Queen's Park. I will eat the continental breakfast. I will listen to speeches. I will feel the embrace of my community. And all I want from this celebration is for my heart and my eyes to be raised, I want to see, again, the vision of a world of welcome and inclusion. I want to imagine what it would be like to live free of the fear of brutes and bullies, free of the worry that disabled children will be starved to death, free of the worry that maybe my life doesn't matter ...

Windgap Cafe opens in Matraville for International Day of People with Disability
Torin Chen, Southern Courier, 28th November 2014
Mr Lockwood, Wai Sing Sui and Laura Cameron are ready to brew and serve coffees at the new Mr Espresso by Windgap Cafe at Matraville that opens tomorrow as part of International Day of People with Disability. he trio are part of Windgap’s two-year Youth Employment Program which creates a career pathway for people with disabilities ...

Celebrate and Struggle: International Day of People with Disabilities
Amber Smock, Access Living, 3rd December 2014
... we have to remember that people with disabilities around the world are still locked in a real struggle for their human rights ...

Special Olympics World Games 2015 - Team Australia announced on International Day of People with Disability
Special Olympics Australia, 3rd December 2014
From 25 July-2 August 2015, 76 Aussie athletes will wear the green and gold with pride in Los Angeles, USA at the Special Olympics World Summer Games. It will be the largest sporting event in the world for the year and our team will compete alongside 7,000 athletes from 177 countries.
33-year-old Josie McLean from Sydney’s Northern Beaches is excited to have been selected to represent Australia in tenpin bowling. Josie says, ‘When I opened the letter telling me I was selected I yelled and shouted with excitement. In my large family, I’ll be the first and only person to represent Australia and that’s truly wonderful.’
Congratulations to Josie, and to Carley Chapman (Athletics) and to all of the athletes selected for Team Australia 2015 - you can see all of the team members here.

Friday, 5 December 2014

Weekend reading and viewing: 6th - 7th December 2014

When a Little Girl With Down Syndrome Showed What's 'Possible'
Amy Julia Becker, Good Morning America, 1st December 2014
As the mother of an 8-year old with Down syndrome, I sometimes get annoyed by headlines trumpeting the everyday accomplishments of kids with intellectual disabilities ... I want to uphold the intrinsic value of all the kids with intellectual disabilities, especially the ones who don’t make the headlines.

Wise words from a city parent
Pippa Hodge, Brighton and Hove Independent, 30th November 2014
Imagine there was a “language-sensitivity spectrum” drawn as a line from cool blue to red hot. At the blue end sit those of us who think it doesn’t really matter how a disability or a condition is described. And at the reactive red end sit those of us who are often very uncomfortable with the words and terms used by professionals, friends, family, or passers-by ...

The Importance of Someone "Like Me" in the Movies
Mardra Skiora, The Huffington Post, 19th November 2014
After a screening of the live action short film Menschen, Sarah Lotfi was approached by a young woman who exclaimed, "That's me!"

The young woman with Down syndrome referred to her resemblance to the costar of the film, Connor Long. Seeing someone who looked a little bit like herself on the movie screen was an exciting and moving moment for her, and an enlightening moment for Lotfi. "It moved me as a filmmaker," said the director ...

How special needs advocacy is becoming a ‘cliché’ !
Two Minute Parenting, 1st December 2014
... How can we be happy by giving it back to a 70 year old who made the effort to approach us and ask about the ‘syndrome’ ...  (Our kids) are becoming active members of our social systems ... While this does mean that people should get sensitive about them but at this moment of big social change, it also becomes our duty to facilitate the process by educating others and by being accommodating who don’t know any better ...

The dual diagnosis merry-go-round
For Elysium, 29th November 2014
... I am no stranger to evaluations ... they have big posters in the waiting room of the pediatric rehabilitation offices that chart typical kids’ development. I said I stand there reading the posters while I wait to take Kyle in to speech therapy for his incredibly low speech skills or into occupational therapy for his significantly delayed motor skills, and reading that poster makes me feel like crap ...

The untold story of Indigenous Australians and disability: five questions to Scott Avery
The Guardian, 28th November 2014
... When unnecessary suffering is caused by people being denied the health care they desperately need, or when people are wrongly placed in institutions or prisons when they just shouldn’t be there – that makes me passionate too ...

Panel: Those with disabilities should train police
The Washington Post, 4th December 2014
A Maryland commission formed in response to the in-custody death of a man with Down syndrome says the state should create a center in his name where people with intellectual and developmental disabilities would learn how to teach organizations how to effectively interact with people like themselves ...

Step UP! Hunter - wrapping up Down syndrome awareness 'time'

Candy Connors has written a great wrap-up about the Hunter Region's Step UP! held on 23rd November:

Thank you EVERYONE who braved the heat to help make Step UP! the huge success it was. Over 500 people were there.....WOW!!!

Having two fantastic MC's, Leigh Creighton and Michael from Mobydisc, certainly made for a wonderful day for everyone.

Entertainment included; Chance2Dance, Waltz-Sing Matilda's, face-painting and other activities under the huge Carriageway Shed, providing shelter from the heat.

All up, we had 50 volunteers! They looked great in their green t-shirts,were easy to spot and did an amazing job.

Hopefully lots of you had the chance to say hi to Tracylee, our EO from DSNSW, who travelled up to share the morning with us and be our roaming photographer.

NBN 3 were there to film the start of our day. Click here.

DSHR Steering Committee worked non stop to make this day happen for us all: Gail Nay, Kym Petersen, Lisa Wilkinson Gibson, Lisa Nelson and Meaghan Hepplewhite.

Congratulations to everyone!

Thursday, 4 December 2014

Library Thursday - books and other resources

Library Shelf

Making Self-employment Work for People with Disabilities
by Cary Griffin, David Hammis, Molly Sullivan
This is an American publication covering the following topics:
  • Self-Employment as a Mainstream Approach to Adult Life
  • Person-Centered Business Planning: Discovering Personal Genius
  • Business Feasibility
  • Building the Business Plan
  • Marketing and Sales Tactics
  • Small Business and Social Security Income Benefits Analysis
  • Small Business Finance and Small Business Owners with Disabilities
Members' library

The Down Syndrome NSW library catalogue is available to view here.  

Archiving Project
Our archiving project continues on a weekly basis in the office.
Do you have any old photos from Down Syndrome NSW events that you would like to send to us? 
Send print material to
Down Syndrome NSW, PO Box 107, Northmead 2152
Or digital material to the library via

Colouring resources 

Following our post about online access to resources for older children and adults who enjoy colouring, readers also recommend:  
A brilliant resource that can be downloaded and coloured in comes from the deviant art blog. There is a wonderful collection and the artists who post are happy for people to download and colour (just not on-sell) and give them credit if posting work on the web. From animals to people, simple to complex. Lovely images like mermaids such as Ariel, ponies, fish and more.
Thanks Aileen.
Dover Books has a large range of colouring books too. Available in some art supply stores and bookshops.
Thanks Jo.

Online publications

by Brian Melloni and Robert Ingpen, 2011
A video 'book' that could be useful for helping to explain death to children and to people with intellectual disability. Thanks to Down Syndrome Victoria for posting this link on their Facebook page recently.

Congratulations to editors Dave Hingsburger and Angie Nethercott on completing the third year of publication of Service, Support and Success (the Direct Support Newsletter), published monthly in Canada by Vita Community Services. It is made freely available online and by subscription (contact details are in every issue). Each issue addresses a single topic. The last few issues from 2014 are now available online, as are all back issues:
  • Volume 3-Issue 8: The Art of Summer
  • Volume 3-Issue 9: Something is Different Here: Promoting Awareness of an Invisible Disorder
  • Volume 3-Issue 10: No Borderline between Respect and Care: Supporting People with Intellectual Disabilities Who have Borderline Personality Disorder
  • Volume 3-Issue 11: Movember and Men’s Health: What You Should Know! 
  • Volume 3-Issue 12: Food, Flavours & Finding Connections: Honouring Diversity in the Kitchen
People with Disability Australia E-bulletin
November 2014 issue

Mader You Look!
2014 (8th edition) - magazine of the NSW-wide Don't DIS myABILITY campaign for International Day of People with Disability.

A new blog has been launched by the NSW Council for Intellectual Disability.
The first post (2nd December 2014) is  on whether ADHC should close, with the rollout of the National Disability Insurance Scheme.

Centre for Disability Studies News : No. 13, Vol 2.

Wednesday, 3 December 2014

'Low functioning' and 'high functioning' - often used but what does it tell us?

Do you find the terminology 'low functioning' or 'high functioning' acceptable, or even useful when it is applied to your child? What do parents and teachers mean when we/they use it?

This post was not written about students with Down syndrome, nevertheless Mary Louise Betram's thoughts on the limitations of such terminology will resonate with many parents and teachers - she leaves us in no doubt that it is not useful. It's quite long and detailed, but well worth reading by both parents and teachers, to the very last paragraphs.

Low Functioning? High Functioning? What Are We Really Saying?
Mary Louise Betram, Guest post at Teaching Learners with Multiple Special Needs, 28th November 2014

... "Low functioning" tells me nothing and gives me no clues EXCEPT to tell me about the adults who work with the child ... Kids who are called "high functioning" are the ones who are the easier ones to problem solve. "High functioning" has nothing to do with them, it's all about us and how we see them and their needs.

International Day of people with Disability - Down Syndrome Australia launches new resources

Today, 3rd of December 2014, is International Day of people with Disability - a UN sanctioned day to recognise the rights and abilities of people with disability, celebrated around the world.

Down Syndrome Australia launches new resources for health professionals, expectant parents and those with a new baby with Down syndrome

The time around diagnosis can be an emotional and overwhelming time. As the national peak body representing people with Down syndrome and their families, we encourage health professionals to have a contemporary view of Down syndrome today, and to support parents as they seek the important information they will need after discovering their baby has/may have Down syndrome.

As Non-Invasive Prenatal Screening (NIPS) becomes more accessible and more mainstream, it is foreseeable that these tests will become a routine part of healthcare during pregnancy. We believe it is important for health professionals and expectant parents to keep some important points in mind when considering any form of prenatal screening or testing for Down syndrome.

Down Syndrome Australia believes that any offer of prenatal testing should include:
  • An understanding that prenatal testing is voluntary
  • Accurate and relevant information about the test and the conditions that are being tested for
  • Sufficient time for prospective parents to deliberate about this information in the context of their existing values and beliefs
  • Access to genetic counselling and relevant support services such as Down syndrome organisations in each state and territory
Unfortunately, the current level of care experienced by prospective parents does not always meet this standard. Parents say they often feel pressured into making certain decisions quickly, when what they need is time, information and respect to make decisions appropriate to their own particular beliefs and circumstances.

The resources are:
  • An online prenatal fact sheet available on the DSA website 
  • A new 1300 national support phone line to link parents to their local organisation 1300 881 935
  • National New Parent Guide
  • A short video, Down Syndrome Today, aimed at health professionals to encourage a contemporary view of Down syndrome today and end the out-dated, negative stereotypes of Down syndrome and encourage a more balanced approach when working with families, particularly in the prenatal period. This video is available on You Tube with closed captioning.

The video, the online prenatal resource and a fact sheet, 'What is Down Syndrome?' will soon be available on the Healthshare online platform for easy access by health professionals.

The new resources are only part of the support provided by state and territory associations, and we encourage parents to contact their local association to link in with the other supports they can offer.