A great ride, for a great cause, with a great result!

The 2011 Scrapheap Adventurers made it to Cameron Corner on 23rd April, and are on the way home - congratulations and thank you to Perry Gilsenan and all involved.

The first report in, from the R Kelly Gang is here, with the first photos.

Many more stories and pictures to come ...

We do not have final fundraising figures yet, but the R Kelly Gang have reached $8,645, exceeding their target of $8000. The total is approaching $50,000 !

Official Scrapheap Adventure website will be updated as the Adventurers return and recover. 

Thank you to everyone who donated and encouraged the riders along the long, long way!

The Thompson’s raise over $4000 for Down Syndrome through the Tuff Truck Challenge!

We catch up with Bronwyn Thompson to chat about her family’s experience in this year’s Tuff Truck Challenge, and discover why they decided to raise money for Down Syndrome NSW....

So Bronwyn, tell us a bit about the Tuff Truck Challenge!

Well, once again, our family competed in the Tuff Truck Challenge, an event held the weekend of Friday 8th - Sunday 10th April at Milbrodale in the Singleton area. Around 10,000 people came along to watch 50 or so trucks compete in driving over obstacles: If you can imagine boulders the size of your house, that’s the sort of terrain the trucks try to drive over!! The event is like a big carnival, and it’s become very family oriented in recent years. There’s face painting for the kids, you can get a good coffee, and it’s a lot of fun for everyone! Most people camp in motor homes and tents all over the site, although it can be quite noisy through the night as you tend to hear every hammer and tong of people working on their trucks! So this year we also rented a cottage nearby for some relief!

Describe your team’s truck!

It’s an old Mercedes Benz Uni MOG we found rusting in a paddock one summer’s day. We thought it would be fantastic to do it up and make some use out of it for a worthy cause – so we transformed it from the rustic relic it was into the red and black monster that it now is!! Unfortunately we didn’t win the Tuff Truck challenge this year, but we very nearly won the first stage of the event which was very exciting! Flynn, my 4 year old grandson who has Down syndrome, calls our truck “Yay” because that’s what everyone yells when they see it! He was our Tuff Truck team manager and kept us all in line, don’t you worry!

What was your best memory of the day?
Seeing the excitement on Flynn’s face when the crowd cheered for “Yay” – he knew they were cheering for Poppa, who was driving the truck!

I think it was pretty awe inspiring for him!

What do you wish more people would know about children like Flynn, who have Down syndrome?
That they are the same as other children – just a bit different. It’s important to learn what is best for every child - whether they have Down syndrome or not. Having a child with Down syndrome is a great journey, but it isn’t always easy. Hannah and Bradley, Flynn’s parents, have been inspirational. When Flynn had to have open heart surgery at 9 months, it was the hardest thing we’d all ever had to go through in our lives, but we have a very caring, inclusive family and got through it together. And because there’s real community in our family, we always try to make Flynn feel accepted. We have something called “Sign Sundays” where we all have to speak in sign language every Sunday! At first we were worried that Flynn wouldn’t be able to keep up with our speech, but now I think he worries we won’t be able to keep up with him!

And finally, why did you decide to raise money for Down Syndrome NSW?
Because we want the organisation to continue the great work they’re doing: they’re giving hope and courage to so many families. There were so many people who supported us in raising funds for the Tuff truck challenge - I think they could see the value of what Down Syndrome NSW does, and also our sincerity in the cause. If we can raise any money that will make a difference in Flynn or any other child’s or family’s life, then all the sleepless nights and hard work we put in is worth it!

Jess Chalker interviewed Bronwyn Thompson.

New fact sheet on alcohol and other drugs and people with intellectual disability

NSW Council for Intellectual Disability has released the 29th of our Healthier Lives fact sheets for families, advocates, disability workers and other professionals. This one is titled Alcohol and other drugs.

All the other fact sheets in this series, written for people with intellectual disability are available here

What's on in May?

Now that the very long weekend is over, let's recap what's on in May:

Parenting siblings workshop - 3rd May, Cardiff

Why stop now?  Inclusive education in high school - West Ryde, 4th May

Managing challenging behaviours collaboratively course - starting 5th May, Wollondilly

Join the Dots, Illawarra - 5th May

The BIG Event: self-directed support - making it happen - 10th & 11th May, West Ryde

Puberty, sexuality and relationships workshop (for parents) - 14th May, Newcastle

Key sign workshop - 18th May, Wauchope

Macarthur District Disability Services workshop on intellectual disability and dementia - 24th May
 
CHW-School Link conference on mental health and intellectual disability - 27th May, Liverpool

Hannah’s Hum Drum on internet radio

Hannah Bradsworth is a young woman with Down syndrome who has her own radio program (solo), Hannah's Hum Drum, in Augusta, Western Australia. Check it out www.2oceansfm.com.au  on Wednesdays at 6.00 pm WA time (that's 8.00 pm on the east coast). It is streamed live over the internet, so you can listen from anywhere in the world.

You can send  requests for music to Hannah via info@2ocenasfm.com.au  - she'd love to here from listeners.

Hannah has previously had a spot on Yackety Yak (podcast here), a community radio program in her home state of Victoria (Radio East Gippsland at 105.5 and 90.7 FM). 

More jobs for people with a disability: Ready Willing and Able

A new strategy was launched in February with the aim of helping to halve the gap in the unemployment rate between people with a disability and the overall community by 2016. The Ready, Willing and Able program requires the NSW public sector to take three actions to provide job opportunities for people with a disability. 

• Each of the NSW Government's super departments will identify and target at least 10 permanent positions over the next two years that are to be filled by people with a disability.
• Five per cent of the cadetship, apprenticeship and traineeship opportunities that are created in the NSW public sector will be reserved for people with a disability. 
• Each principal NSW government department must have at least one procurement contract with a registered disability employer in 2010-2011 and 2011-2012.

More information is available from National Disability Services.

Right planet, right child: Beverley Beckham

Beverley Beckham is a well known Boston writer, who occasionally writes about her granddaughter, Lucy, who has Down syndrome.  In this column, she ponders life on earth and our concept of limitations .... and there is a lovely photo of Lucy with her grandfather, as a bonus:

..... Here on earth, we all depend on wheels. We don’t have wings — we can’t fly. This is our disability.

We accommodate this disability by using bicycles, cars, trains, and planes and, yes, these are clumsy, cumbersome things and, yes, we’d get places a lot faster if we could just spread our wings and fly.

But we don’t beat ourselves up over this. We don’t think of ourselves as imperfect because we can’t take flight.

But we would if everyone else could fly ....  read all of the article here.

Perhaps we could use this analogy any time we are told that accommodations/adaptations are too difficult/expensive/impose on others ....?

Kindy kids thrive under 'creative' approach

Hills News, 26th April 2011:

Among last year's kindergarten intake at Our Lady of Fatima Primary School Caringbah were several children with high-support needs.

The school has extensive experience educating the full range of learners, but the unusually high number called for a new approach that heavily favoured the children's integration with regular classes.

The success of the "creative" supported integration model has now seen the children sail through kindergarten and ready to move up to grade 1.

With funding for special needs students across the education sector at a premium, Our Lady of Fatima — like many schools — decided to look at innovative ways to best support the five students, two of whom had Down syndrome, and one each with William's syndrome, mosaic cell-line deformity, and sensory integration difficulties.

.... click here to read the full article.

Disabled find their home is no longer safe: Daily Telegraph

Gemma Jones reports in today's Daily Telegraph (Sydney) about dilemmas arising from devolution of a large residential centre in Sydney, redevelopment of the site and relocation of residents.

Disabled residents of a historic Sydney home are to be moved on, with a not-for-profit organisation planning to develop a complex of seven-storey unit blocks on the site.

Some of the residents have lived at Crowle House at Ryde for almost 50 years - and families signed bonds believing their relatives would have a haven for life.

The historic home on 2ha was donated to people with a disability by the family of a philanthropist who had allowed disadvantaged children to live there.

Two years ago it was taken over by Achieve Australia, a private service provider for the disabled which boasts Olympian Duncan Armstrong as ambassador.

A spokeswoman confirmed Achieve would move 31 residents into supported housing and there were plans with council for seven-storey buildings with hundreds of units.

She claimed some residents might be able to move back after the development but she said other units would be sold to fund Achieve programs and to protect Crowle House from debt ..... read on here for the full article

Library Thursday: new DVDs - Beautiful and Deedah

Genevieve Clay's new short film Beautiful is available for members to borrow from the Down Syndrome NSW library. Focussing on the development of a relationship that encounters interference, it says a lot in a short time, and says it very well.

The first-time lead actors are Catherine Senior, who has Down syndrome, and Peter Rosini. Made in Canberra as part of an inclusive film making project.  You can see footage of the Through a Different Lens workshops here.

Stateline interview with cast and crew of Beautiful

Genevieve Clay's website Busstop Films

Deedah (25 mins) is a account of a seven-year old girl’s relationship with her six-year old brother, who has Down syndrome, produced by their mother, a media professional. 

Our previewer's assessment:

.... very much a snapshot of a young sister’s perspective. A little naive but sweet.The clear message is that Jonathan is just one of the kids and is loved by his sister.

Contact the Down Syndrome NSW library to arrange a loan of either DVD.

All the best, Scrapheapers - have a wonderful trip

Our very best wishes to the Scrapheap Adventurers already on their way,  and those setting out today and tomorrow to meet up at Cameron Corner on Saturday!

We wish you safe but 'interesting' trip, and look forward to the tall tales when you get back.

If you see them approaching your town - go out to meet them, and make them welcome.

May the road rise up to meet you, and the wind be at your back.

New ADHC website launched - more information, easier to find

If you are looking for services and support for someone with with a disability and/or their family living in NSW, the NSW governeent's Ageing, Disability and Home Care Website is a logical starting point

With the recent change in government in NSW, the 'super department' of Human Services has been renamed the Department of Family and Community Services.  Ageing, Disability and Home Care (ADHC) remains part of this super department.

The Ageing Disability and Home Care website has been extensively revised, redesigned and relaunched.  It looks much more welcoming, and is easier to navigate, particularly for finding information relevant to people with disabilities and their families. 

Overall the new website is much more user-friendly, and we recommend you become familiar with it if you care for an adult or child with Down syndrome in NSW - you will probably need to access information about ADHC operated and/or funded services at some point.

Much of the information has transferred from the previous site, but is much easier to find, such as descriptions of HACC (Home and Community Care) services,  and links to HACC Services Fact Sheets - now located under Help at home.

New information is also being added - for example the information about a new model of Drop-in support for people with disabilities living in the community is very welcome, and is located under the Somewhere to live menu.

The options for locating ADHC offices and services in your local area are much better. Click on the 'Contact us' tab and give it a try - you can search by service/office type and location.

You might still have some difficulty locating particular programs - for example post-school programs (Transition to Work and Community Participation) are located under the submenu "Learning new skills" - logical, but three levels down the menu heirarchy.

It's well worth a bookmark, and a welcome development of an information resource that many of us need from time to time.

Wordless Wednesday

People with Disability: response to the draft report of the Inquiry into Disability Care and Support

Peak disability advocacy body, People With Disability has pubished a special issue of its E-Bulletin on the progress of the Productivity Commission Inquiry into Disability Care and Support, including PWD's response to the draft report, and plans for participating in further developments.  PWD broadly supports the draft report, and explains its position on those points it challenges:

... It is not an exaggeration to say that the Productivity Commission’s Interim Report on disability care and support is the most important public document on Australian disability services for almost 30 years.

... PWD welcomes the Interim Report, and acknowledges the work that has been put in to ensure that the content of the public hearings and the 603 submissions made to the Productivity Commission in its consultation phase, has been included and reflected upon.  The timeframe for response to the Report is necessarily short, given the need to complete and distribute the Final Report.  But the discussion about how best to implement a new disability service system will continue beyond the timeframe of the enquiry and people who are committed to ensuring that we deliver a system that is effective and truly inclusive, are at least able to rely on the fact that we are referring now to a single document.
... Once the report is handed over to the Government that is the time when disability peak organisations need to establish and maintain a regular and constant dialogue, to ensure that the significant systems changes recommended are carried through.

Click hear to download and read the detailed PWD E-Bulletin special issue

Scrapheap Adventure Ride media round-up

The 2011 Scrapheap Adventure Ride is happening this Easter weekend, with the meet-up at Cameron Corner on Saturday 23rd April.  Riders are setting off during the week, from at least three States.  They have already drawn media attention across Australia over the last few weeks.  This week's media round-up includes stories about three teams:

• Hills Shire News 19th April 2011 (Rod, Fiona and Cassie Kelly)
• Sunshine Coast Daily, 18th April 2011 (Narelle Rimmer and Tina Eccles)
• Manly Daily, 19th April (Tony Balkins)

 Australian Dirt Bike Magazine - May 2011:

Inspirational Aussie dad, Perry Gilsenan, is the man behind the Scrapheap Adventure Ride. It is a concept which sees keen punters restore a junker dirt bike, saddle up and point it towards Cameron Corner in North-West NSW, to raise funds for Down Syndrome awareness.

It’s a cause that’s close to 47-year-old Gilsenan, whose eight-year-old daughter, Grace, suffers from the condition. But what makes his odyssey even more exceptional is that Perry doesn’t have legs (and hasn’t since a horrific train accident, at age 12).

He’s already clocked up 500,000km in the name of charity despite his own disability, and isn’t showing signs of letting up any time soon.

“I don’t want Grace to have a life with limitations,” said Perry. “While I don’t have legs, there are so many things I can achieve. The only thing which limits me is my mind, my heart and my imagination. That’s why I love my motorcycle so much: there are no limits.”

Some of the wildest contraptions imaginable are being pieced together for the second running of the event, which will be held at Easter 2011.

How about a Ducati Monster 900 or Kawasaki ZZR 250 converted to a dual sport weapon?

If the budget won’t stretch to such exotic machinery, even a humble scrapheap-sourced CT110 will do the trick.

Get along to http://www.scrapheapadventureride.com.au to check out some photos of competitors' machines, make a donation, or better yet, register to ride!

Fraser Pollock at the Sheffer Gallery: June 2011

Fraser Pollock, a 15 year old Sydney artist who has Down syndrome, will have drawings on exhibition in June.  You may have seen some of Fraser's work in Down Syndrome NSW publications.  He has an online gallery here.

Sheffer Gallery
38 Lander Street, Darlington 2008

Wednesday the 1st of June  - 11th June 2011

The exhibition will feature new work from the following artists: Marc Etherington, Fraser Pollock, Linda Brescia, Mitchell Spider, Frank Nowlan, Joe Dolahenty, Stephen Freiberg, Angus Mordant, and Peter Fay, Andrew Ritson.

I have invited a group of young artists to show work that they have been making of late. There is no curatorial theme associated with this exhibition. I am happy to let artists show what is fresh from their studios. As such there will be a great diversity of work and it will have a similar rationale to the show I organised at this space last year. (Peter Fray, curator)

NSW Aboriginal Community Care Gathering Committee nominations now open. Due 9 June

The NSW Aboriginal Community Care Gathering Committee is a group of representative Aboriginal Community Care and disability workers and community members who meet to improve community care and disability services for Aboriginal and Torres Strait Islander people in NSW. The work of the Gathering involves policy development, conferences, responses to Government initiatives and regional and state networking.

Nominations from Aboriginal and Torres Strait Islander people with experience in community care and related services are now open for the next term. Gathering Committee meetings are held in Sydney, 3 – 5 times per year usually over 2 days. The Terms of Reference give more detail about how the Committee operates.

Deadline for return of nominations is 9 June 2011.

Click here for selection and committee information
Click here for Election Nomination forms

Source: NCOSS

It's normal to be different: awareness TV campaign in Brazil

A new ad in the campaign 'It's Normal to be Different', by Instituto MetaSocial, is being aired on national Brazilian TV networks: http://youtu.be/_29acQ8GKEU
English Translation:
I love music. Like any girl my age. I love the internet. I love parties. But I am not like girls my age in everyhing. In one thing I am very different ... I play the drums.

Beyond ABBA - A Workshop Program for People with a Disability

Can you sing along to ABBA? Wave fabric? Make a macaroni necklace? Yes? Well, good work! But let’s see what else is out there….is there life beyond ABBA?

Beyond ABBA (formally known as WAPD) is Riverside Theatres’ ongoing workshop program that aims to challenge the predictable arts meal that is served up to people with a disability and instead provides an alternative diet of creativity, self expression & innovation.

Working alongside professional arts workers people with a disability can participate in a drama and movement workshop program designed to build self confidence, promote well being, increase skills in performing and self expression.

Beyond ABBA will focus on the theme Invisibility which was inspired by a piece of writing, from writer, actress and International Day for People with a Disability ambassador, Audrey O’Connor.

Using film, movement and theatre participants will explore what it means to feel invisible, to be not seen or heard and have no voice or say. Also explored will be the alternative, so what it’s like to be in the spotlight, the public eye, the notion of celebrity and how that is something to behold in our society.

2011 dates
Term 2 - Wednesday April 27th- Friday July 1st (10 weeks)
Term 3 - Wednesday July 20th - Friday Sept 23rd (10 weeks)
Term 4 – Wednesday October 12th- Friday Dec 9th (9 weeks)

Performance date
Wednesday November 23rd

Workshop times
Wednesdays 10-11:30am & 12-1:30pm
Thursdays 10-11:30am & 12-1:30pm
Fridays 10-11:30am & 12-1:30pm

Cost $140/term. Term 4 $126. Paid upfront prior to workshops commencing.
All workshops take place At Granville Youth & Community Centres, 3A Memorial Drive, Granville.

Places are strictly limited. To enrol call Alison Richardson on 8839 3359 or email wapd_riverside@parracity.nsw.gov.au

6.30 pm, Channel Ten tonight - story on Ty Belnap

George Negus at 6.30 on Channel Ten this evening will include a story about Ty Belnap, the star of the feature movie Just Like U, and recent winner of a World Down Syndrome Day Award from Down Syndrome International.