Weekend reading and viewing: 11th - 12th May 2013

Shutting them out: one parent's story of disability, discrimination and our schools
Joel Deane, The Wheeler Centre, 6th May 2013

Last week, (Joel Deane) attended a public high school open day, looking for a high school for his daughter – and was sadly reminded that discrimination is alive and well in today’s Australia.

Commonwealth discriminates against people with intellectual disability, High Court rules

National Council on Intellectual Disability, 10th May 2013

Today, the High Court of Australia dismissed the Commonwealth’s application to appeal the Federal Court decision which ruled that the Business Services Wage Assessment Tool (BSWAT) discriminated against people with intellectual disability.Today’s decision is a triumph for the human rights of people with intellectual disability in Australia.

Tips for Helping Your Child Build Social Skills
By NCLD Editorial Team, National Centre for Learning Disabilities, undated

... Depending on the nature and severity of your child’s learning disability, he or she may need additional support from you to develop strong social skills — skills that are critical for building and maintaining friendships. Guiding your child through various social scripts will enable him or her to navigate such situations with greater ease and less apprehension, especially when he or she is interacting with other children.

Understanding speech problems in children with Down syndrome
Jennifer Bekins, Talk - Down Syndrome, 6th May 2013
... Contrary to comments I’ve heard, there is no such thing as “Down syndrome speech.” Unclear speech is a symptom of a larger problem. It is important to mention that before your child undergoes a speech evaluation, make sure they’ve had a recent hearing test (within 12 months to the test date). Even mild hearing loss can affect your child’s ability to hear sounds and produce them accurately.
The first of a series of posts on this topic - here is the second, posted on 9th May.

Vision and Down syndrome

Interview with Danielle Ledoux, NDSS
Down syndrome has effects on the developing eye, which could impact the proper development of vision. Eye disease is reported in over half of patients with Down Syndrome, from less severe problems such as tear duct abnormalities to vision threatening diagnoses, such as early age cataracts. Particular attention should be given to vision in people with Down syndrome.

Creating opportunities to connect
Sharon Williams, Resourcing Families

Our family has never been keen on respite. For a start, we don’t like the word. For us, it makes it seem like our son is a burden that we want to escape. We don’t feel that way and we don’t want George or his brother or sister to ... Recently, we have decided that we need to think more creatively about facilitating connections (for George). Surprisingly, one of the resources that we have decided to tap into is respite funding – but not in a traditional way and we don’t call it that.

NDIS Update: a summary of John Della Bosca’s Facebook Q and A

Every Australian Counts, 9th May 2013
On Tuesday, 6 May the Every Australia Counts Campaign Director John Della Bosca held a Q and A on our Facebook page to answer supporters’ questions about recent developments in the campaign and what it will mean for people on the ground.

Next steps for DisabilityCare Australia in New South Wales
NSW Ageing, Disability and Home Care media release, 9th May 2013

A clear pathway for participants to access DisabilityCare Australia in the Hunter launch area was announced today by the Australian and New South Wales Governments ... The first stage of the launch in New South Wales will cover the local government areas of Newcastle, Lake Macquarie and Maitland ...

No Goodbyes
Rudely Interrupted, December 2012
Rudely Interrupted are one of Australia's truly unique indie rock acts.

For Mothers Day:

Maria and Eunice Shriver: The Gift My Mother Gave Me
3rd May 2013

In this film Maria Shriver tells the story of how her mother, Eunice Shriver, founded Special Olympics, broke through social barriers, and in doing so, showed Maria the gift of possibility.

6 secrets special needs Moms know but WON'T tell you

Suzanne Perryman, Special Needs Mom, 14th April, 2013

... I have secrets. Things I don’t talk about and stuff that other moms don’t know,or may have forgotten along the way ...

What do you really want for Mother’s Day?
Amy Baskin, Kids Grow Up, 11th May 2012

A blog on parenting young adults with special needs, from the author of  More Than a Mom (Woodbine House).

New logo for Down Syndrome NSW

You will have noticed the new Down Syndrome NSW logo over on the right  -->>>

Over the next couple of months it will replace the old one, as we refresh some of our publications. The logo is consistent with Down Syndrome Australia's. Many thanks and much appreciation to Lyndall Thomas from The Information Access Group in Melbourne for the graphic design work.

Theatre call-out: Wagga Wagga

All Abilities Theatre Company provides opportunities for people with a disability to develop theatrical and staging skills. Enrolments are now open to those with a disability and an interest in theatre for the company's next production. Previous acting experience is not required.

Rehearsals will run twice weekly from 22 May to 12 October followed by two public performances at Wagga Wagga Civic Theatre on 16 and 17 October.

• Details are on the Accessible Arts website, here

• Current arts call-outs on Accessible Arts

Constructing Futures: survey of parents' aspirations for young adults with intellectual disabilities

An Australian Research Council Linkage Project in partnership with Endeavour Foundation:

You are invited to participate in Constructing Futures: survey of parents' aspirations for young adults with intellectual disabilities, a survey aimed at increasing our understanding of what parents hope the lives of their young adult with an intellectual disability will be. 

We are asking parents of a young adult with an intellectual disability between the ages of 18 and 30 years to respond to the survey. 

You can open the survey and respond to the questions at any time until the end of 2013. We anticipate the survey will take between 20-30 minutes to complete. 

This project aims todevelop a better understanding of theaspirations for their adult life that are held by young adults with an intellectualdisability, and by their parents. 

Organisations that provide services to this vulnerable group will be able to use the results to examine current, and guide future, service provision for this group.

• Click here to take the survey

Library Thursday, 9th May 2013

Calling on Artists and Photographers 

Back into the swing of things after our move!

Time to start sending in photos of people with Down syndrome for our annual calendar. The deadline for submissions is the end of June 2013.

The preferred format is JPEG, although photographic prints will be accepted. Please forward digital files to admin@dsansw.org.au 

Prints to be sent to our new postal address:

Down Syndrome NSW
PO Box 107
Northmead NSW 2152

We are also seeking artworks (photos, drawings, paintings, mixed media etc) created by people with Down syndrome, to use as illustration in our publications, thereby showcasing the creative activities of people with Down syndrome.

It is preferable that scanned and/or photographic images be at print resolution ie 300 dpi. Acknowledgement of the creator of the work will be given.

Feel free to contact Jo at the library email address below for more information

Please submit scanned images and/or photos to library@dsansw.org.au

Please include details of the artists name, age and year of production, if possible, in a folder labeled “Images for DS NSW Publications by ____”

NDIS update

 Over the last few days, while a levy to help fund the NDIS has been agreed across political parties (and widely debated), Tasmania, Victoria and Queensland's State governments have now signed up to full implementation, leaving Western Australia and the Northern Territory the only two still to agree.

• Queensland signs up to the NDIS - Every Australian Counts news report and photo.

National and State updates on progress in implementation of the National Disability Insurance Scheme (DisabilityCare Australia) are provided regularly by the Minister and Parliamentary  Secretary for Disability.

NDIS Update #43 was issued on 7th May 2013
NDIS Update #42 was issued on 6th May 2013

Sign up for email updates or read previous updates on the NDIS website here.

To keep up with media reports from around Australia, on the NDIS (and other matters related to disability), you can sign up to national peak body, People With Disability Australia's  Daily Media Roundup

Reminder - photos for Mothers Day gallery

Thank you for the wonderful photos already received for our Mothers Day gallery, to be published this coming Sunday. If you would still like to contribute, please send your photo of the person you care for who has Down syndrome, with their mother, to downsyndromenswblogs@gmail.com by the end of tomorrow (Thursday, 9th May).

Images will be posted without captions - they will speak for themselves.

T4321 in Bourke

Scrapheap Adventure Ride 2013 wasn't the only event celebrating World Down Syndrome Day and raising awareness about people with Down syndrome in far north western NSW recently.  The community of Bourke once again rallied for the cause around the local family of Kruz Ryan, holding a T4321 event, reporting it in their local paper, and raising over $1000 to support the work of Down Syndrome NSW!

Kruz Ryan, with his Mum, Lynette Gooch, Gay Bock, Melanie Hayman and Karen McKenna

Helper and supporters for T4321 in Bourke, 2013

Kruz's mother, Lynette said 'A big thank you to everyone who made a donation, or bought a plate from our ittle local boy. We live in an amazing community filled with generous, supportive people,' thanks echoed by all at Down Syndrome NSW.

'Q and A' on the NDIS earlier today

The Every Australian Counts campaign for the National Disability Insurance Scheme held a  Q and A this morning, via their Facebook page.   It is recorded in the 100 +  comments and replies following the post there, dated today, and headed by this logo:

Disability and retirement: Inclusive and active ageing - seminar

Centre for Disability and Research Policy (University of Sydney):

Older Australians with a disability are working in open employment and in Australian Disability Enterprises (ADEs), but many know little about retirement and are ill-prepared for their third age. What will they do when they are no longer working? Will they be socially isolated and bored or will they enjoy an active, socially connected retirement? How can disability service providers support these individuals to plan for and achieve a fulfilling retirement?

Disability and Retirement Seminar

1 pm - 5 pm Friday 14th June, 2013

University of Sydney, Camperdown

• Full details of program, speakers, venue and registration

People with Down syndrome living life to the full

Self-advocate helps all
Olivia Lepore Thriving (Boston Children’s Hospital blog), 30th April, 2013

At Boston Children’s Hospital, the Down Syndrome Program has found a way to give hope to both parents and children who come to the clinic — his name is Nate Simons. Simons is a valued 24-year-old member of the program’s staff, and like the children he interacts with at the clinic, he has Down syndrome. 

... “We are very grateful for the addition of the self-advocate position,” ... Nate — and his predecessor, Ben Majewski — have been remarkably successful matches.”           

 ... read the full story about Nate Simons's job here.

• Down Syndrome Program Boston Children's Hospital on Facebook

Not dancing, flying
... It was an overcast day in March when the dancers of e.motion21 took to the Federation Square stage to celebrate World Down Syndrome Day. The dance troupe, made up of children and young adults with Down syndrome, defied conventional expectations and filled the stage with an enthusiastic energy ...  read the full story here

Honorary Doctorate
Congratulations to Karen Gaffney who will receive an honorary doctorate from the University of Portland today. Karen will become one of very few people with Down Syndrome to ever receive an honorary doctorate from a college or university. 

(Billy Shulz was awarded an Honorary Doctorate posthumously, by West Carolina University, in 2012.)

Weekend reading and viewing, 4th - 5th May 2013

Paul has graduated from Columbia College!

Paul Sawka, Paul's Blog (Canadian Down Syndrome Society), 22nd April 2013

I am proud to be graduated from Columbia College ...It was hard work to get to college but once I was in college I enjoyed the work I got to do.

Our Scrapheap Adventure, Back o' Bourke 2013
Roger and Michelle Bamber, Keeping Up with DS NSW, 1st May 2013
In case you missed it earlier ... My husband and I with our three boys had the fantastic opportunity to join the Scrapheap Adventure Ride this year to the Back O’ Bourke, and it turned out to be a perfect adventure for three young boys ... My oldest son Josiah who is almost sixteen and has Down syndrome, became ‘one of the boys’ very quickly and it wasn’t long before he had conned his way onto a bike.

DS/ASD as I know it: The process of diagnosing autism in children with Down syndrome,
Jennifer Bekins, Talk-Down Syndrome, 1st May 2013

Having a clear diagnosis opens the door for appropriate services. Areas of need should guide treatment.

“Didn’t you get tested?”

Rachel Adams, Salon, 29th April 2013
... Since Mother’s Day is just around the corner, here’s the gift I’d most like to receive ... please remember that Henry is a child, not a political statement.

Day in the Life of Robert
Ontario Ministry of Community and Social Services (undated)
At 35 years old, Robert has already lived a life fuller than most, despite early predictions from doctors that he wouldn’t even be able to so much as walk or talk. But walk and talk he does.

What if?

Tom Bachofner, The Future's Rosie, 1st May 2013

... my train of thought has been knocked off kilter this last week or so. My mind has been stuck in a little rut consuming itself with those dreaded 'What ifs'...

Life with Down syndrome is full of possibilities
Liz Szabo, USA Today, 1st May 2013

The lives of the 250,000 Americans with Down syndrome today are radically different than a generation ago ... Advocates for people with Down syndrome feel a new urgency to spread the word about these advances, as more women undergo prenatal tests for Down syndrome and other genetic conditions.

With Down syndrome diagnosis comes a wrenching choice
Liz Szabo, USA Today, 1st May 2013

... In some ways, medicine's ability to map out a person's genetic identity is outpacing society's understanding of what it means to live with a disability, or raise a child with one, says G. Kevin Donovan, a pediatrician and director of the Edmund Pellegrino Center for Clinical Bioethics at Georgetown University in Washington

Connect2Educate: AAC and iPads in the Classroom, 

Jane Farrall, Literacy, AAC and Assistive Technology blog, 2nd May 2013

Last year Fiona had a whole class of students who used iPads with Proloquo2Go as their high technology communication device – and the presentation today shared the journey in her classroom with the delegates at the (AGOSCI 2013) conference.

This week for the NDIS: bipartisan political support, increased community interest

The National Disability Insurance Scheme, and its funding has been prominent in the media over the last few days, the week ending with apparent bipartisan support for a levy to at least part fund it, and relevant legislation to be introduced into the current Parliament. A search for 'NDIS" in any online news service will throw up a list of reports and opinions.

• Anger subsides as leaders reach NDIS compromise, Stephanie Peatling, The Age, and Sydney Morning Herald, 2nd May 2013

The Australian community will be the winner from the finalisation of the national disability insurance scheme.Yes, there are many questions that have not been answered about how the scheme will work (not the least of which is where the rest of the funding will come from) and not much time in which to answer them.But they can be answered and Parliament can do this. 

 Let’s meet good faith with optimism. What a way for the 43rd Parliament to end.

• Follow links to the stream of news reports and analyses on the Down Syndrome Australia Facebook page

Interest in how the NDIS will impact on individuals and families has been heightened by responses to remarks made by the CEO of Myer and other business leaders. The outcome might not have been anticipated by those business leaders, but the interest generated has been welcomed.

• As Kurt Fearnley tweeted yesterday:  Disability discussed across the country. What a great couple of days, with the potential of permanent positive change.
• Hijacking the NDIS, Kathryn Wicks, the Sydney Morning Herald's Community Editor and co-author of the Australian Autism Handbook 2013, comments on the response from business. 

The Every Australian Counts campaign continues to monitor progress, promote the need for an NDIS, and explain what it will mean for all Australians.  In an email to supporters today, the campaign director, John Della Bosca said:

It's been a great week, one of so many in this long fight for the NDIS. Thank you always for your support - none of this happens without you. A lot has happened in the campaign this week and we know that many of you will be wondering what it all means.

On Tuesday 7th May John Della Bosca will host a live Q and A on the Every Australian Counts Facebook page from 2.00 pm to answer your questions.

Spectronics iPad workshops for educators to be repeated in Sydney, Melbourne and Brisbane

Excellent news for educators who might have missed the earlier sold-out workshops, from Spectronics. the special education and technology people:

In response to MANY requests, we are repeating our very popular one-day (iPad) workshops again this month. Only in Sydney, Melbourne and Brisbane this time around.

Sydney   Tuesday 21st May 2013

Melbourne   Wednesday 29th May

Brisbane   Friday 31st May

• Visit the Spectronics website for more information or to register 

New book on body language

Body Talk - Teaching Students with Disabilities about Body Language

Pat Crissey, Woodbine House, 2013

Children and teens with autism and other developmental disabilities can be taught the language of nonverbal communication with the practical strategies developed by veteran special education teacher Pat Crissey. More than 100 activities break down elements of body language into teachable components. 

• Publisher's website for more information.

Note - Woodbine House does not accept online orders from Australia - purchases must be made through a third party supplier.

Forum on Intellectual Disability, Mental Health and School Education

For professionals working in education, disability services, mental health and health.

31st May 2013 

9.00am to 3.45pm

St George Hospital Research and Education Centre
South St, Kogarah

The aim of the forum is to promote better services for children and young people at school with an intellectual disability who also have a mental illness.

For the draft program click here.

Source: CHW School-Link 

More on NDIS funding ...

Debate and reporting on funding National Disability Insurance Scheme continues across national news media today, including an expanded response from Stella Young, following yesterday's criticism of a levy:

• Why fund NDIS? Because one day you might need it, Stella Young Ramp Up 1 May 2013

... Predictably, cries of "It's so unfair" and "Why should I have to pay for these people" came thick and fast. Yesterday news.com.au published a piece by Matt Young. Despite our shared surname, Matt is no relation to me and I don't know him personally. I'm sure he's a lovely chap.

It's just that he, like far too many Australians, seems to think that disability has nothing to do with him. He works hard for his money. Why shouldn't he get to spend it how he wants?

... In the spirit of healthy debate, news.com.au invited a response from me. I'm a fellow taxpayer, after all. I share some of Matt's concerns about wanting to decide what I spend my money on

... read the full article here, on Ramp Up

• Labor to lock in levy rise,  Mark Kenny, Sydney Morning Herald, 1st May 2013

Labor's $14 billion national disability insurance scheme will be funded in part by a special Medicare-style levy set at 0.5 per cent of income, after Julia Gillard reversed her opposition to the funding option.

... It means the NDIS will become a reality, lifting the hopes of 2 million Australians living with disabilities and their carers.

The decision, likely to be announced within days, will result in the collection of about $3.5 billion a year towards the Commonwealth's major share of the scheme. It is expected to begin in 2014.

.... In a series of mixed messages emanating from the Coalition, Opposition Leader Tony Abbott recommitted to the NDIS but questioned the wisdom of a levy and hinted that the starting date should be subject to the state of the economy.

... read the full article here, from the Sydney Morning Herald.

• Julia Gillard announces 0.5 per cent increase in Medicare levy to fund the National Disability Insurance Scheme, Lanai Scarr, Samantha Maiden, Gemma Jones, News Limited Network, 1st May 01, 2013
  

Julia Gillard has confirmed workers will face a $300-a-year tax increase on average through the Medicare levy if she's re-elected to fund the National Disability Insurance Scheme.
But she has indicated the proposal will not be legislated in the current Parliament - suggesting the plan to hike the Medicare levy from July 1, 2014, will be taken to the election as Labor's policy ...

.... read the full report here at news.com

Our Scrapheap Adventure, Back o' Bourke 2013

My husband and I with our three boys had the fantastic opportunity to join the Scrapheap Adventure Ride this year to the Back O’ Bourke, and it turned out to be a perfect adventure for three young boys.

We took three days to drive out to Comeroo Camel Station and were the first to arrive so we were on hand to watch all the riders arrive, beginning with those from Inverell. The bikes were amazingly diverse from little postie bikes to bikes with homemade side carts kitted out with fake dogs. As more and more riders arrived we heard all sorts of stories of where each rider had come from and the adventures they had had along the way.

My oldest son Josiah who is almost sixteen and has Down syndrome, became ‘one of the boys’ very quickly and it wasn’t long before he had conned his way onto a bike. Once he had had a go on one, there was no stopping him, he walked around with a bike helmet under one arm asking anyone he could to take him riding around the property, and many of the riders obliged. 

Other than riding, my boys also loved the freedom to roam, catching lizards and going yabbying, and of course not showering! The lack of electronic devices and phone or internet access meant that we made friends around board games. By night we were entertained by poetry recitals and music. 

On the last night we were also entertained by a lively auction which added much needed funds to those already raised by the riders. One auction item on the night was a light aircraft flight that was purchased and then given to Josiah. The next morning Josiah and his brothers had a half hour flight over the station, swooping both cattle and the leaving riders. They thought it was awesome!

Altogether my family had an awesome time and I think the riders who made the journey enjoyed the weekend as well. We did have a few riders that didn’t make it due to accidents on the way. A couple of riders ended up in Bourke hospital and they tell me they were really well cared for there. 

Personally my family really enjoyed the weekend and we would happily go again, but the weekend also plays an important role in the life of Down Syndrome NSW. It raises much needed funds to support the work of the association, this year raising around $50,000. 

The Scrapheap adventure was started by Perry Gilsenan four years ago as a way of raising money and awareness for people with Down syndrome. But even more importantly we have the opportunity to raise awareness of the needs and abilities of people with Down syndrome particularly in rural areas. I would like to thank those who participated this year and for making my family feel so welcome. We can’t wait to see where Perry will have the Scrapheap Adventure take us next year.

Roger and Michelle Bamber
(Roger is on the Board of Down Syndrome NSW)

Events in May 2013

Estate Planning seminar
Down Syndrome NSW
1st May 2013
Burwood

Getting Started workshops
My Choice Matters 

Coffs Harbour Thursday 2 May 2013
Dubbo Wednesday 8 May 2013
Liverpool Friday 10 May 2013
Goulburn Thursday 16 May 2013

Movement and Sound Workshop - applications close
Dean Watson and The Australian Chamber Orchestra

3rd May 2013

Rockability concert
Interchange Australia
4th May
Mittagong

Webinar on effective reading and language instruction for children with Down syndrome
Down Syndrome Education International
7th May 2013

Up! Club Coordinator - applications close
Down Syndrome NSW
10th May 2013

After School - What Then? webinar

Family Advocacy

16 May 2013
17 May 2013

Free Comedy Writing Workshop

Beyond the Square

18th May 2013

Parramatta

Integrating iPads into your Classroom: for Learning Support and Special Ed 

Spectronics

Sydney   Tuesday 21st May 2013

Melbourne   Wednesday 29th May

Brisbane   Friday 31st May

Lets get started – webinar about inclusive education
Family Advocacy
29 May 2013

Forum on Intellectual Disability, Mental Health and School Education
For professionals in health, education and mental health
31st May 2013
Kogarah (Sydney)

2013 NSW Disability Industry Innovation Awards - nominations close
National Disability Services

31st May 2013

Funding the NDIS - is a levy the way to go?

Today the national peak body, People with Disability Australia (PWDA) called for bipartisan support to introduce a levy to fund DisabilityCare Australia, the National Disability Insurance Scheme (NDIS).

• PWDA Media Release, 30th April: PWDA calls for Medicare-style levy to fund NDIS
• The ABC's Ramp Up on an NDIS levy
• Australian Federation of Disability Organisations (AFDO)'s response
• NDIS Levy Considered By Feds - ProBono News
• Would you pay $300 to support the disabled, Matt Young, news.com
• $300 for Julia Gillard's NDIS scheme? Please, my wheelchair costs $22,000, Stella Young's reply to Matt Young, new.com
• Disability levy a big mistake, says business leader, Jonathon Swan, Sydney Morning Herald

You can also follow developments on the NDIS via Down Syndrome Australia on Facebook