St Andrews College Children's Camp 2014

From the 3rd to the 7th of December 2014 St Andrews College (University of Sydney) will proudly host its third annual St Andrews College Children’s Camp for children aged 6 - 15 years, with physical and intellectual disabilities. The camp provides children with the opportunity to participate in a range of activities, form new friendships, be challenged to try something new, and gain a sense of independence.

The camp is at no cost to families and will be held at St Andrews College at the University of Sydney. Applications are now open (extended to 17th October), and all details, contacts and registration forms are available form the SACC website.

Families, carers and the NDIS - webinar, 13th October

Marking Carers Week, the National Disability Insurance Agency is hosting a webinar on Monday 13th October 2014 at 1.00 pm (Eastern Daylight Time)

Panellists will discuss their experiences as carers and family members with the Scheme. You are invited to join the discussion and submit questions.

Join the the webinar by following this link.

The webinar comprises audio, visual, live captioning and Auslan to make it widely accessible.

Submit questions and comments during the webinar via Twitter using the hashtag #NDISWEBINAR or through the Livechat facility on the webinar page.

If you have questions, phone 1800 800 110.

Latest additions to our 'events' listings

Down Syndrome NSW events

Save the date for Show Off! 
Down Syndrome NSW will present the Show Off Arts Festival for the first time this year. More details soon.
Sunday 30 November 2014 - Riverside Theatres Parramatta

Other events

Intellectual Disability and Ageing Forum

Agency for Clinical Innovation - facing the challenges with a multidisciplinary team
Wednesday 15 October 2014 - Sutherland Hospital Auditorium

Success In Transitions

Imagine More Annual Conference - local, national and international approaches to support meaningful and inclusive lives for people with disabilities. It will highlight ideas through the sharing of stories of what is possible.
6th - 7th November 2014 - Canberra

A Practical Pathway to a Better Life Resourcing Families - free workshop will explore practical strategies to support people with disability to develop their relationships and connections; build their skills and self confidence; and enhance their image and reputation. Guest presenter Jane Sherwin. Thursday 13 November 2014 - West Ryde

Direct your support, live your life! How you can use the NDIS to be in charge

Presented by In Charge - discover the life benefits of directing your own support; 

find out how YOU can do this; hear from people with disability and families successfully self-directing.

Thursday 13th or Wednesday 19th November  2014 - Charlestown

PossABLE IDEAS EXPO

IDEAS - aims to give people with disabilities, their families and carers the opportunity to see, hear and try the best local, national and international options to assist them in making important decisions in all areas of their lives.
Friday 14th and Saturday 15th November 2014 - Maitland

Down syndrome awareness ... and beyond (1)

Officially in Australia we celebrate Down Syndrome Awareness Week, during the third week of October.  It often spills over into the days before and after the official week, helped along by our increasingly global connections via social media, as the US marks Down Syndrome Awareness Month throughout October - maybe we should just regard part or all of October as "Down Syndrome Awareness Time".  In any case, during this time, a great deal of good, thoughtful writing, many beautiful images and videos, and any means of communicating a message, emerges around the world, and we will highlight some of the best of it here, over the next couple of weeks or so ...

Caleb lives with his  family on the south coast 
of NSW, and he intends to make the most of October!

Down Syndrome Awareness
Garden of My Heart, 1st October 2014
... This month, social media will be flooded with extra pictures of people with Ds and many will choose to share facts and figures. That is good, but I’m craving something more this year. The internet links families and individuals with Ds in very powerful ways, and as I’ve said on this blog in the past, it’s time to harness that voice and move past the awareness script our community seems to be stuck repeating ...

One of the most important things to share during Down Syndrome Awareness Month

Sipping Lemonade, 3rd October 2014

... This moment, like so many moments, is just a reminder that much of the sadness I felt those first days after Kate was born was based on unfounded fears. I grieved the little things that I thought I had lost — when in reality, our family has gained all of that and more ...

Beyond Awareness: National Down Syndrome Acceptance Month

Meriah Nichols, Huffington Post (blog), 1st October 2014

October is Down Syndrome Awareness Month here in the United States. I'm personally not out to promote awareness anymore, because we are there already. We are aware.

Family raised daughter with Down syndrome before aid was available

Michael Reschke, Herald-Times Online, 6th October 2014
It’s hard to say how the decisions you make today will shape tomorrow, but at 83, Tim Hines has had some time to think about his ... “We had both been raised to deal with what was there, which is a blessing by itself,” he said. “We, it just never entered our minds that we would do anything other than try to bring her along.”

Warning on attempted NDIS scam

The National Disability Insurance Agency (NDIA) has become aware of a potential scam involving participants of the National Disability Insurance Scheme (NDIS).

Please be aware that the NDIA will not ask for personal information, such as your bank account details, over the phone or in an email. You should only provide this information to the NDIA using the Bank Account Details Form. This form can be returned to your local NDIA office or by post to:

National Disability Insurance Agency
GPO Box 700

Canberra, ACT 2601

If you receive a phone call from someone claiming to be from the NDIA and requesting this information, do not give it to them.

Please report all cases of attempted scams to your NDIA contact or call 1800 800 110.

Visit the NDIS Privacy web page to find out more about the NDIA’s procedures for handling your personal information. You can also find out more about known scams via the Australian Government Scamwatch website.

Source: DS NSW e-Update October 2014 #1

I Helen, I Hercules ... Wollongong, December

The end of the year gets busy, so put this one in your diary and book your tickets now ... it look very interesting!

Down Syndrome NSW Board 2014 - 2015, and annual report 2014

The 35th Annual General Meeting of the Association was held on Sunday 28 September 2014 at the Information Cultural Exchange space in Parramatta.

The newly elected Board for 2014-2015 is

President:  Matthew Kelly 

Vice-President:  Margot Elliffe

Treasurer:  Richard Yee 

Members:

Josh Coburn
Graeme Dube
Chris Elenor
William Grieve
Meaghan Hepplewhite
Andrew Hinde
Jacqueline Little
Jason Lloyd
Greg Simmons

The Annual Report 2013-2014 can be downloaded here.

Weekend reading and viewing: 4th - 5th October 2014

It's their loss, 
Leticia Keighley, Embracing Wade, 30th September 2014
... I don’t set out of my house on a “hearts and minds” mission every time I go shopping but if the opportunity arises, I like to take advantage of it. So, even though I know I shouldn’t, I can’t help feeling a little disappointed when Wade doesn’t act like Wade when I want him to ...

Why I Let My Daughter Rearrange the Chairs in the Waiting Room

Samantha Gill, The Mighty, 28th September 2014

... the little boy came up to me and shook my hand and hugged me and started getting very emotional and talking very fast. The mom became very embarrassed and started to apologize. I was so confused —not because of what the boy was doing but what the mom was doing. Why was she apologizing to me? We are at the behavioral doctor’s office. Was she so conditioned to apologize that she forgot? ...

When a pair of jeans can change a life
Laura Hampson, Mama Mia, 28th September 2014
... Karen’s daughter then challenged her to create a range that would cater to the specific needs of an individual with Down Syndrome; a challenge she relished ...

How Not To Compliment My Son's Appearance

Lisa Eicher, Huffington Post, 26th September 2014
I can't count the number of times I have been told that Archie "hardly even looks like he has Down syndrome." ... But here's the thing: Telling me that my child who has Down syndrome doesn't look like he has it "that much," or in whatever arrangement of words one can phrase that thought, is not a compliment ...

I Won't Let My Daughter With Down Syndrome Be Defined By A 'List'

Deanna Smith, Huffington Post (blog), 25th September 2014
When my daughter was diagnosed with Down syndrome, I was given a list. A list of potential features and problems to expect. This list is cold, emotionless and almost comes across as grotesque if you are reading it with fear already in your heart ... It's as if someone was told to describe Christmas and they said that it might include an evergreen tree and cold weather ...

All Down's people deserve dignity
Peter Scott, The Scotsman, 25th September 2014
Insensitivity, ignorance and then bac­ktracking does precious little to help people in our society with learning difficulties ...

How editors and journalists can produce better and fairer reporting on people with disability

Shawn Burns, World News Publishing Focus, 8th September 2014

Partnerships between advocacy groups and the mainstream media are a hallmark of the rise of Advocacy Journalism as a conduit for meaningful social change. And some of the most prominent collaborations seeking to facilitate self-representation for minorities have involved people with disability (PWD). However, as Shawn Burns reports, there's still much work for editors and journalists to do in this area. 
(This link was also posted in People with Down syndrome in the media on 30th September 2014)

Reposting this version of 'Happy' just because it's a the long weekend here, and spring:

Step Up for Down Syndrome 2014 in the Hunter

2015 DS NSW Calendar released - order now!

To order your copies of the 2015 Down Syndrome NSW Calendar please down load the order form and return them to our office for quick delivery.

Thank you to all who have contributed photos - whether they were your first or the latest of many.

Good health: information on vision and glasses

More good information from the UK: 

Our colleagues at the Down's Syndrome Association based in London have released online two articles on vision and glasses for children with Down syndrome, originally published in the DSA Journal #127, Spring/Summer 2013. 

Both articles are written by Dr Maggie Woodhouse, an internationally recognised expert in vision and children with Down syndrome, with many years experience in both research and clinical practice.

'See and Learn Speech' - free webinar 2nd October

This free webinar from UK based Down Syndrome Education International  is scheduled for 6.00 pm (18.00) Sydney (Eastern Standard) time.  Other time zones are listed on the website: 

Helping children with Down syndrome to develop clearer speech People with Down syndrome often struggle to express themselves clearly. This can be frustrating and a significant obstacle in daily life and in education. Speech clarity is one of the most common concerns identified by families of children with Down syndrome.

Introducing See and Learn Speech 

- free webinar

This live online event offers guidance about speech development for children with Down syndrome and how DSE's See and Learn programmes can be used to teach early sound discrimination and speech production skills, and to improve speech clarity.

Further information about See and Learn is available on the See and Learn web site.

The event is presented by Professor Sue Buckley, DSE's Director of Science and Research and an internationally recognized expert in education for children with Down syndrome.

... all details and a link to register are here.

Step Up 2014

Only two weeks till Sydney Step Up!   Counting down the days till this years Step Up? Ask your family and friends to join you for a great day.There are four events to choose from: Sydney - Sunday 19th October 2014 Picton - Sunday 19th October 2014.  Wagga Wagga - Sunday 26th October 2014 Newcastle - Sunday 23rd November 2014 It’s easy to get involved – Check out the four different events happening around NSW and decide which is best for you  Register online HERE  Invite your friends and family to join in  Get fundraising Come on the day, walk and have fun! Our goal is to raise $50,000 this year and the only way we can do it, is with your help. So what are you waiting for? Jump online now and become a part of our team! We're also still looking for more volunteers, so if you have any family and friends who aren't walking but would like to help out on the day, email us at stepup@dsansw.org.au

People with Down syndrome in the media

Kimba Wall to feature in a book about the families of children with Down syndrome

Jesse Wray-McCann, Mordialloc Chelsea Leader, 23rd September 2014
When Kimba Wall was born with Down syndrome, the doctor told her parents to take her home, but not expect much from her. Twenty-five years later, the Chelsea woman’s story is being used to inspire and encourage other families with newborns diagnosed with Down syndrome...

Life: Harry Nagle

Sarah Horgan, Evening Echo, 22nd September 2014

A teen with Down Syndrome hopes to see his name in bright lights after landing a major film role.
Harry Nagle from Ballyfeard near Kinsale vowed to become a movie star, like his idol John Travolta, after joining CADA Performing Arts as a child ...

Photographer with Down's syndrome 'sees the world differently'

Kate Monaghan, BBC News Magazine, 9th September 2014
Photographer Oliver Hellowell has Down's syndrome, which his mother says means he sees the world differently from most people. Oliver's unique way of capturing the natural world has recently gained him a lot of fans ...

Qantas flight attendants break into song to surprise Glee actress Lauren Potter

Robyn Ironside, News.com,  19th September 2014
QANTAS flight attendants have turned the tables on one of the stars of hit television show Glee, delivering a pitch perfect welcome to Australia for Lauren Potter. The actress who plays Beth in the series, landed in Australia on Wednesday ahead of this weekend’s e.motion21 Annual Dance Spectacular in Melbourne.

How editors and journalists can produce better and fairer reporting on people with disability

Shawn Burns, World News Publishing Focus, 8th September 2014

Partnerships between advocacy groups and the mainstream media are a hallmark of the rise of Advocacy Journalism as a conduit for meaningful social change. And some of the most prominent collaborations seeking to facilitate self-representation for minorities have involved people with disability (PWD). However, as Shawn Burns reports, there's still much work for editors and journalists to do in this area.

Trivia Night success - thank you

We had an impressive turnout of 180 people at our Trivia Night at Five Dock RSL on 30th August. It was a lively mix of members, their friends and families, staff, board members and a strong representation of Up Clubbers.

A great night was had by all with the winners taking home an impressive prize pack that included; hand made cards by Bridget Parker, wine, and a gift voucher. There were prizes for second and third place too. There was a special prize given to the most valued player on the losing table, won by DS NSW Board member, Jason Lloyd.

We are looking to roll this out across the State, so if you are interested in hosting your own trivia night please get in touch with the Ben Chinnock, our Community Engagement Manager, via ben.chinnock@dsansw.org.au and he will be able to provide you with a 'how to' guide.

The winning team - well done!

Thank you Scrappers!

Scrapheap Adventure 2014 - group photo from Saturday afternoon,
20th September, in Nymboida

See all the photos at Scrapheap Adventure 2014 on Facebook

This is what founder and organiser, Perry Gilsenan had to say immediately after getting back from last weekend's Scrapheap Adventure Ride:

Scrapheap Adventure Ride 2014 was one of our best. A great venue and a great bunch of people raising close to $70,000 for Down Syndrome NSW!!!

There was lots of laughter on arrival and the feedback was everyone had a great ride getting to Nymboida!

Friday night there were 3 different stews and a beef Curry to feed close to 100 people. No complaints and ample available. The big shed was great at meal times.

On Saturday morning Dave Ramsay lead a ride, with a lot of laughs too with the Milan 50cc scooter getting the most air on some of the jumps.

Saturday night was our biggest night ever with about 150 people sitting down together for a good dinner, trophies awarded, charity auction and then the raffle prizes! Looks like we will hit $70,000 in funds raised this year! A Great Effort by one and all.

Best Scrapper - Chris Schneider - Milan 50cc Scooter
Best Engineered Scrapper - Charley Loomis - FZWhy 250
Best Vinduro - Demus Tintner - XT500
Best Sidecar - Dak Dak Dave Kawasaki 750 Sidecar
Most Raised Individual was Andrew Hunter who raised over $6,000, Graeme Girdler $4,136, Mike Case $3,076
Most Raised Teams was Team Inverell who raised over $10,000, closely followed by Toowoomba Scrappers $7,400 then Team DT with $4,075
Longest Distance was Graeme Girdler who rode up from the South Coast, only getting his licence 8 weeks prior. Matty Brumby had come up from Melbourne but only rode from Sydney.
Hard Luck Award went to Adam Wurr, who ran an old IT175, restored over 12 months. His bike broke down about 45 minutes after we left Dural and was shedding parts consistently whilst on the trailer the rest of the way to Nymboida.

Once again a big THANK YOU to all who have attended or supported riders on this year's Scrapheap Adventure Ride.

Best Sidecar - David Scharf,  Kawasaki 750 Sidecar

And thank you, Perry!

• Parks boss riding for Down Syndrome, Gloucester Advocate, 23rd September 2014

Weekend reading and viewing: 27th - 28th September 2014

For Barry Trotz and wife, transition to Washington centers around son with Down syndrome

Alex Pruitt, The Washington Post, 23rd September 2014

... at first it seemed ideal: grassy parks down the block, middle school within biking ... neighboring adults who invited them to an ice cream party and whose daughters knocked on the front door to invite Nolan to play kickball ... But summer soon ended. No more knocking, no more kickball. Then school started, and Nolan’s teacher was great, but a new environment with less individual attention led to acting out in class. At home, Nolan had grown quieter since the family completed its move in late August. Vocalizing his feelings had always been a struggle ...

Don't make excuses to exclude my child from your sport

Maureen Wallace, She Knows, 19th September 2014

... To be clear, I don't expect a ticker tape parade when I introduce my child with Down syndrome to an activity or organization. But I will always expect an equal level of interest that any other child receives — and I will always expect a mindset of willingness to try ...

Learning when (not) to talk to strangers about my child's disability

Mary Evelyn, What Do You Do Dear? 19th September 2014
... She didn’t speak another word and, since making a complete stranger feel guilty/foolish/uncomfortable wasn’t on my “to do” list for the day, I felt terrible. Smooth move, Self ...

The Big Day - Stacey and Ian
Pink Shoe Photography, 19th September 2014
A beautiful, professional portfolio ... While the couple faced their friends and family, the pastor took a moment to appreciate this special couple. He said that all Stacy and Ian wanted was to be married to one another. That it was their dream. He asked everyone to take a moment to appreciate the love in their lives and he encouraged them to hold it tight and dear. Most of all, he requested that they never take marriage for granted ...

Welcome to Italy - Benvenuti in Italia

Linda Smarto, National Association for Down Syndrome Newsletter (via the Adult Down Syndrome Clinic Blog), 17th September 2014
Are you familiar with “Welcome to Holland”? It was written in 1987 by Emily Perl Kingsley. I think it is a wonderful analogy about taking a long awaited trip and having a child with a disability. Although, I will admit, it has always been a little “bitter sweet” for me ...

What not to say
The Diary of a Not So Ordinary Boy, 26th June 2014
Oh, people put their foot in their mouths all the time, so, in the interests of harmony between us, and me not jumping on your head, or down your throat, here is my list of ‘Things What Not To Say To A Parent Of A Child With Learning Difficulties Like, Say, Down Syndrome’ ...

Disabled Children Aren’t Burdens — or Angels

This Ain't Living, 25th September 2014

In popular narratives, disabled children seem to be framed continually as either one of two things. They are either precious angels sent to Earth to teach us all a lesson, or they’re burdens dragging on the lives of their parents and family members, who are forced to make tremendous sacrifices for them. Neither is true, and both are incredibly harmful not just for disabled children, but also for the adults who they grow into ...

On employment

Employment is a hot topic among people with Down syndrome and other intellectual disabilities and those who care for and support them.  The employment experiences of people with Down syndrome in Australia is as varied as in other countries (and it is not always pretty), and continues to evolve:

Ticket to Work
Down Syndrome NSW eUpdate, September 2014 #1

A recent report The Transitions to Employment of Australian Young People with Disability and the Ticket to Work Initiative, notes that “the current transition to employment support systems are largely failing Australian young people with disability and condemning these young people to a marginalised and dependant life with reduced opportunity for social and economic participation”.

The report advocates for all Australian young people with disability to receive access to ‘good transition’ activities, activities generally provided as a matter of course to their non-disabled peers.

• Read the PDF Ticket to Work document here

New scholarship opens door to hospitality role for people with disability
Natasha Boddy, Sydney Morning Herald, 24th September 2014
Young people with a disability who want to work in hospitality can apply for a new training scholarship under a program available in Canberra ...


Tim Hortons model the tip of the iceberg for hiring people with disabilities

Barbara Turnbull, The Star, 16th December 2014

Clint Sparling loves his job. And since the day Sparling, who has Down syndrome, began work at a Scarborough Tim Hortons nearly 20 years ago, he has been Mark Wafer’s best employee ...

A Hotel Hires And Trains People With Disabilities As Part Of Their Business Plan

San Francisco Globe (SFG), 29th August 2014

It started with a simple idea. Why shouldn't those with disabilities get the same employment opportunities as others? Patu Keshwani and his staff decided to change it ...

Latest additions to 'events' pages

Other events 2014 - 2015
These links provide information about events run by other organisations that might be of interest to people with Down syndrome, their families, carers and professionals who support them.

Mapping Community Resources
Centre for Disability Studies workshop. Working Together to build social connections. A collaborative workshop for support staff and people with disabilities
Thursday 2nd and  Friday 3rd October 2014 - Lismore

NDIS events, NSW

NDIS Community Information Forum Newcastle Jockey Club, Darling Street, Broadmeadow
Tuesday, 7 October, 10am to 12pm Tuesday, 7 October, 10am to 12pm 

NDIS Provider ForumNewcastle Jockey Club, Darling Street, BroadmeadowTuesday, 7 October, 1pm to 3pm 

NDIS Community Information ForumBelmont 16’ Sailing Club,The Parade, BelmontWednesday, 8 October 2014, 10am to 12pm  

NDIS Community Information ForumEast Maitland Bowling Club, Cnr New England & Banks Street, East MaitlandThursday, 9 October 2014, 6.30pm to 8.30pm

• All details, including RSVP requirements are here, on the NDIS 'Events' web page

Introduction to Person-Centred Facilitation 

Centre for Disability Studies - two day workshop facilitated by Ray Murray. Opportunities will be provided to practice facilitation strategies and action methods suitable for leading groups, delivering training and giving presentations.
Monday 13th and Tuesday 14th October 2014 - University of Sydney

Open Day - Inclusive Education Program, University of Sydney
For people with an intellectual disability who would like to experience university - you can bring a friend or support person if you like.
Tuesday, 14th October 2015 - Camperdown

Taking Action for a Good Life
Family Advocacy workshop - explore why and when you need to speak up for your family member. You will leave with ideas, strategies and a strong framework to undertake advocacy actions in the future.

Tuesday 21st October 2014 - Armidale

Wednesday 22nd October 2014 - Taree

Wednesday 29th October 2014 - Bankstown

Thursday 30th October 2014 - Campbelltown

Developmental Disabilities, Challenging Behaviour and Mental Health:  Research to Practice and Policy

Centre for Disability Policy and Research (University of Sydney) - the latest developments in disability and mental health research and practice will be presented. This conference is intended for researchers and clinical practitioners, and will also benefit those working with people with developmental disabilities in the community.

Friday 7 November 2014 - Sydney

Having a Say Conference 2015
VALID - the 2015 Having a Say Conference invites all delegates to break down the barriers - even the barriers we have built for ourselves. Annual event bringing together self advocates and adults with disabilities from around Australia.

4 - 6th February 2015 - Geelong

Advice on supporting early language development

A common question for families everywhere:
When to Start Speech Therapy for Children with Down Syndrome 

Jennifer Bekins, Talk-Down Syndrome, 15th September 2014

... Most children with DS are in preschool or kindergarten when goals for articulation are established. Until then, therapy focuses on the child’s ability to understand and use words and gestures to communicate ...

• Other posts on this blog about communication