NDIS funding and timeframe announced at Sydney 'Make It Real' rally today

The Prime Minister, Julia Gillard, announced, at the Make it Real rally in Sydney today, that funding for the National Disability Insurance Scheme would be included in the May 2012 budget, and the time-frame for implementation would be advanced by one year from the Productivity Commission's suggestion.

The venue estimated that 8000 people attended the Sydney event.  Rallies are also being held in Melbourne, Brisbane, Hobart, Adelaide and Perth today.

ABC News video and report of the Sydney rally are here.

Further news and images from rallies around the national are being posted posted by the Every Australian Counts campaign.

(Photo: Every Australian Counts)

This little girl sat in the front row with the Prime Minister and the NSW Premier, and danced while Tim McCallum sang 'You're the Voice' at the close of the proceedings.

Minister's Media release  on NDIS 30th April 2012.

Make it Real Rallies, 30th April ...

Disability support services, their availability (or not), how they are provided, some home truths about who currently bears the costs, and the necessity of a National Disability Insurance Scheme are increasingly covered in the general media, in the run-up to the nationwide 'Make it Real' allies scheduled for next Monday, 30th April:

• If you think the disability insurance scheme is not your problem, think again
• NSW pushes for choice in disability care
• Union warns against NSW disability funding plan
• Rallying for the NDIS: hear us roar!

2013 Calendar photos: due in by 20th May

Since 2000, Down Syndrome NSW has published a calendar based around family photos submitted by members, and designed by Craig Peihopa.  Photo submission for the 2013 are due soon - 20th May!

The calendar has proven to be both useful and much loved.  Many people who buy it every year tell us how much they enjoy seeing the people with Down syndrome features, along with their family and friends, grow each year.  Images of family, friends, celebrations, everyday life, achievements, school, work and play are all welcome - and we love to have all ages represented.

Please send the largest digital file, at the highest resolution you can, of the clearest photos you have for next year's calendar, to  Hanna at DS NSW: hanna@dsansw.org.au  


If you have any queries about your file(s), such as formats, resolution or size, please ask Hanna about that too.

Discussion paper on delivery of person-centred services now online

The discussion paper, Putting people with a disability at the centre of decision making  (referred to in this post earlier this week) is now available online in a number of formats:

Putting people with a disability at the centre of decision making is now available - standard English (.pdf)

Putting people with a disability at the centre of decision making is now available - easy English (.pdf)

Putting people with a disability at the centre of decision making - standard English, large print (.pdf)

Putting people with a disability at the centre of decision making - standard English (.rtf)

Other ADHC documents related to consultations on Person Centred Approaches are available from this page on the ADHC website

Library Thursday: Down Syndrome News, April 2012

Down Syndrome News is published by the National  Down Syndrome Congress (located in Atlanta, Georgia, USA).  The April 2012 (Vol 35 # 2) issue is now available online, and the print edition is available in the Down Syndrome NSW library.

Feature articles in this issue:

Living life with apps
Deep in conversation
Language skills for school success
Davids team


All are excellent articles, well written, easy to read, of interest to families ... but we think that the one page 'Deep in conversation', with its very apt photos, will be a particular reader favourite.

Getting back to basics: Intellectual Disability and Open Employment Tour

Christy Lynch, an advocate for competitive employment for people with intellectual disability, will tour Australia in May this year. The five city tour is sponsored by National Council of Intellectual Disability, Down Syndrome Australia and Disability Employment Australia.

There are two employment streams:

• A one-off half-day Melbourne-based forum will cater to executive and senior managers
• A five city full-day workshop tour has been tailored for Disability Employment Consultants.

More about Christy Lynch

NSW event:

Monday, 14 May 2012 
9.30am to 4.30pm
Citigate Central Sydney

169 - 179 Thomas Street, Haymarket, NSW, 2000

Details and registration

Other cities/States

Friendship and Relationship Workshop: Marrickville

For parents and carers of a person living with a disability. This workshop will give you:

• ideas for supporting people with a disability to feel good about themselves
• make friends
• develop relationship skills and
• keep safe

The workshop will be facilitated by Liz Dore, Relationship Counsellor and Consultant, who has 20 years experience working with people with disability and supporting people including 9 years counselling experience. For more information go to www.relationshipsandprivatestuff.com

Wednesday 9 May 2012 10am - 12.30pm
Building 3, 142 Addison Road, Marrickville, 2204

Cost: Free. Lunch provided after the workshop
RSVP: Contact Joanne on 9569 1288 or epdp_project@eccfcsc.org

Organised by Carers' Program, SLHD and Ethnic Child Care, Family and Community Services Cooperative Limited


Source: IDEAS

People with disabilities to receive vouchers: NSW government discussion paper

The Australian newspaper reports this morning on a discussion paper on the delivery of person-centred services to be released today by the Minister for Disability Services, Andrew Constance:


People with a disability in NSW will be transferred to a voucher-style system in which they buy the support services they need, using funds from a personal account allocated by the state government.

The radical new "person-centred" approach to funding disability services will be outlined to 400 stakeholders in Sydney today by NSW Disability Services Minister Andrew Constance, who yesterday described the initiative as "one of the most significant reforms of the O'Farrell government".


"This is a critical step in the development of a National Disability Insurance Scheme, because it is about the individual planning and assessment and an individual funding agreement," Mr Constance told The Australian.


The changes, to be implemented by July 2014, are designed to increase the control disabled people have over their own lives and to cut the overall cost of disability support in NSW -- about $2 billion each year -- by increasing competition in the sector.


Read the full report by Imre Saluszinsky, The Australian's  NSW political reporter online here.

We will post a link to the discussion paper when it is made available.

26th April 2012: The discussion paper, Putting people with a disability at the centre of decision making is now available online in a number of formats:

Putting people with a disability at the centre of decision making is now available - standard English (.pdf)

Putting people with a disability at the centre of decision making is now available - easy English (.pdf)

Putting people with a disability at the centre of decision making - standard English, large print (.pdf)

Putting people with a disability at the centre of decision making - standard English (.rtf)

Other ADHC documents related to consultations on Person Centred Approaches are available from this page on the ADHC website

Former Deputy Prime Minister Tim Fischer joins fight for national disability scheme

From the Every Australian Counts campaign on Facebook:

Former Deputy Prime Minister Tim Fischer AO has joined forces with the Every Australian Counts campaign to secure a comprehensive National Disability Insurance Scheme (NDIS).

Today, Mr Fischer has been appointed Campaign Patron. His first major role will be next Monday (April 30) at the Make It Real: NDIS 2012 rally at Olympic Park.

Mr Fischer said: “My family has been touched by disability and ...I know first-hand our disability system is broken. In regional Australia it is even worse. Families have limited access to respite, can wait years for equipment and often have to move long distances to find a place for their children to live.”

“Disability can touch people in the city and the country and large and small families in various financial circumstances. It is an issue for every Australian and we have a once in a generation opportunity to fix it.

“The NDIS will enable people with a disability to aspire, achieve, put back into the community and get the support they desperately need. I believe 2012 is the year to make the NDIS real and am looking forward to being part of the campaign to finally make this great idea a reality,” Mr Fischer added.

Find out more at Every Australian Counts.

FestofAll: Young Carers. Together.

24th June 2012

FESTofALL will be headlined at Sydney’s Luna Park Big Top and rolled out in every state, bringing more than 5,000 young carers together. Each event is free, open to young carers aged 5 to 25 and aims to be a day of youthful fun.

Registration is essential! Details here. FestofAll on Facebook.

Disability in Indigenous communities; addressing the disadvantage First Peoples Disability Network (Australia)

Australia’s first national peak body for Aboriginal and Torres Strait Islander people with disability was launched in Sydney on 30th March. Damian Griffis, Executive Officer of the First Peoples Disability Network (Australia) wrote that it is helping to create a strong voice for Aboriginal and Torres Strait Islander people with disability, on Ramp Up, on 20th April:


By any measure, Aboriginal people with disabilities are amongst the most disadvantaged Australians. They often face multiple barriers to their meaningful participation within their own communities and the wider community.

This continues to occur for a range of reasons including the fact that the vast majority of Aboriginal and Torres Strait Islanders with disabilities do not identify as a people with disability. This is because in traditional language there was no comparable word for 'disability'. Also the vast majority of Aboriginal and Torres Strait Islanders with disabilities are reluctant to take on a further negative label - particularly if they already experience discrimination based on their Aboriginality.

As a consequence, 'Disability' is a new conversation in many Aboriginal and Torres Strait Islander communities.  

Read on here.

ADHC news releases

• Three media releases from the NSW Minister for Disability Services, Andrew Constance this week could be relevant to people with Down syndrome and their families:
• 
  
• 19 April 2012 - New home for young people with a disability (New England)
• 
  
• 18 April 2012 - More help for young people with a disability in Sydney's west (Afford, Guildford)
• 
  
• 18 April 2012 - Support for younger onset dementia (Statewide)
• 
  

Image: © Alexdans | Dreamstime.com

100,000 readers

Earlier this week, our individual blog reader meter clicked over to 100,000 since we started counting late in 2007.

Thank you!

Your comments, suggestions, photos and input are welcome: blogeditor@dsansw.org.au

New movie: Cafe de Flore

A new movie premiering next week features a significant character with Down syndrome:

Starring the beautiful Vanessa Paradis, CAFÉ DE FLORE is a love story about people separated by time and place but connected in profound and mysterious ways. Atmospheric, fantastical, tragic and hopeful, the film chronicles the parallel fates of Jacqueline, a young mother with a son with Down syndrome in 1960s Paris, and Antoine, a recently-divorced, successful DJ in present day Montreal. What binds the two stories together is love - euphoric, obsessive, tragic, youthful, timeless love.


We were able to give away some preview tickets this week via our Facebook page.  One of 'our' previewers said " ... LOVED the characters Laurent and Jacqueline and their story too. I'm sure the loudest laughter came from those of us who have some connection to Down syndrome. Actor with Down syndrome was awesomely adorable."


Review in today's Age (Melbourne).

The trailer is here.  In cinemas from 25th April.

DS NSW publications: Autumn 2012

One of the benefits of membership of Down Syndrome NSW is access to a range of publications both in print and online, keeping you up to date with news and information about and for people with Down syndrome and their families, events, and the work of the organisation. Members will have received their quarterly publication in the mail either just before or just after Easter.


Down Syndrome NSW News and Update, Autumn 2012 is now available online here.


Speak Up! Autumn 2012 (Issue # 44) is now available online here.


Information about membership is available from our website, and by contacting Siena O'Brien at our office on 9841 4411.

Scrapheap mementos

A commemorative Scrapheap Adventure Ride 2012 T shirt, signed by every rider,  will be hung in the Down Syndrome NSW office as a reminder of all the amazing Scrappers who contributed to the event and to the organisation.

See the 2012 video here.

Sweeping reform to challenge charities: UNSW Philanthropy Fellow

Gina Anderson, Philanthropy Fellow at the Centre for Social Impact, UNSW  wrote this opinion piece for the Sydney Morning Herald earlier this week:

Not-for-Profit organisations providing for people with disabilities will need to undergo significant change with the introduction of a National Disability Insurance Scheme (NDIS) but are they ready for the challenge?

The NDIS will transfer decisions about how and where to spend money to the individual and their carers rather than the disability service providers.

This new 'citizen-centric' model represents a fundamental shift to the way disability services are funded and delivered that will have implications for the whole Not-for-Profit sector.

... It is a reform on the scale of the introduction of Medicare and compulsory superannuation – two safety nets now taken for granted by every Australian.

... read the full article here, on the University of NSW website.

Every Australian Counts commented:
We often hear people tell us the NDIS is only about helping service providers. This is wrong. Read this university article about the challenge the NDIS presents to disability organisations. The NDIS is about revolutionising disability support and this article gives you a picture of the sweeping changes it will bring.

Special Olympics awareness video

Special Olympics has a reputation for producing short, and very effective public service videos.

Both of these feature men with Down syndrome playing their roles very, very well. You might have seen this one that has been around since the lead up to the 2003 World Games in Ireland, and has been widely circulated.

This one from 2008, produced by Special Olympics Australia is similarly punchy and to the point:



(Thanks to Special Olympics Australia for the link.)

School Leavers Expo: Chatswood, 6th June

Families report widely varying experiences of their access to information about what is available to support people with disabilities once they finish school.  Your son or daughter's school might be very experienced in providing information about post-secondary opportunities, how to access them, and be involved in hosting an 'expo', or they might have no experience at all, and be unsure where to refer you.  Expos are held around the state, organised by local and regional services and organisations, and can be invaluable resources for families.

The Scene has published details of such an event at Chatswood in June:


School Leavers … Discover the pathway that’s right for you at the Sydney North Post School Options Expo on Wednesday 6 June 2012.

The free expo features service providers from organisations across Sydney. There will be information on Transition to Work and Employment programs, and Community Participation programs, so that families and young people will be able to make informed decisions about the program and service provider that best suits their needs ... read on here.

Last T4321 for 2012: Five Dock, 29th April

The All Hallows Morning tea, organised by the Collins family and generously hosted by the parish, has become the traditional finale for the T4321/World Down Syndrome Day season:

Sunday 29th April 

after the 10am Mass, 11 am - midday

All Hallows Catholic Church

Halley St

Five Dock NSW

Come and have a cuppa and yummy pastry kindly donated by Jo from Trovatino Cafe or some delicious antipasto donated by Deli Azzurri, and the best cupcakes from Fiona Lane Cupcakes.

Emily, John and Kathleen would love to see you there.

Carers NSW 2012 Carer Survey: online until 30th April

Carers NSW is an organisation for people who provide unpaid care and support to a family member or friend who has a disability, mental illness, drug and alcohol dependencies, terminal illness, chronic condition or who is frail. Every 2 years, Carers NSW surveys carers to better identify their current needs:


We are conducting this survey to get more information about carers in NSW. This information helps us to identify and advocate for what carers want and need. 
This year’s survey is different to previous surveys. It has three sections for current carers. There is also a fourth section that is just for people who are no longer carers. The Former Carers survey will help us to collect information about carers’ experiences and needs after their caring role ends. 


If you have any questions, need help to complete the survey, or would like to order copies, please contact the Carers NSW Policy Team on 02 9280 4744.

The survey can be completed online here, until 30th April 2012.

Political comment on the NDIS today

There is quite a bit of political comment and media reporting on the National Disability Insurance Scheme (NDIS) today, with it on the agenda for a COAG meeting, and Opposition Leader Tony Abbott raising it a widely reported speech.  Check into the Every Australian Counts website for links and commentary.

Anyone ready for Scrapheap Adventure Ride 2013?

Even when it's done and and the Scrappers are home, news of the Scrapheap Adventure Ride continues  to spread.

Darryn Snyder, in the Mudgee Guardian today, highlights a local connection, in preparation for the 2013 ride!

Website of the week: Adapting Creatively Blog

This blog, recommended by Paula Kluth has some excellent ideas and strategies for adaptations to everyday and classroom activities ... like the easy - and free - card holder, made from unused CDs, to make card games a little easier to manage independently by those who need some support for fine motor function, or this one made from a pool noodle!

And sometimes it's not about things, but about language, and feelings, and behaviour ... worth signing up for regular updates.  Rose-Marie Gallagher's introduction to her blog:

Adapting Creatively is a place where special needs parenting and special education intersect. When a special education teacher becomes a special needs parent, life demands some adapting. Some creativity. From that, this blog was born.


Paula Kluth regularly recommends websites and blogs focussing on inclusion of students with developmental disabilities.

DSE to launch new reading and language intervention in June

Down Syndrome Education International will launch a new reading and language intervention for children with Down syndrome in June. This structured programme is designed to teach literacy skills to children with Down syndrome. It has been shown to improve language and reading outcomes in a landmark randomised controlled intervention trial ... read more about the launch and products here.

Forever Friends: web TV

Note: Series 1 of Life Goes On is available on DVD for Down Syndrome NSW members to borrow from our library.

Actor with Down syndrome Attempts to Make History Again!


Chris Burke, the actor with Down Syndrome best known for his role as “Corky” in the hit ABC-TV show Life Goes On made history as the first person with Down Syndrome to ever have his own TV show. Now he is trying to do it again, this time for kids with a new, inclusive kids show called Forever Friends. “Being in Life Goes On was great,” says Chris. “That show helped to change the way people see people with disabilities. But that was a long time ago. I want to do something for young kids today!”

That is why he has teamed up with fellow band members Joe and John DeMasi. Together they have written and produced the Forever Friends Show, a first of its kind in that it truly shows what an inclusive world looks like. “I have the ability to be your friend” says Chris. “That is the message I want to bring to the world.”

They have filmed two episodes so far which they have launched on web TV and which can be viewed for free at ForeverFriendsShow.org

The show features Chris, Joe and John, Feedback their pesky cat and Newton, their talking computer. Music videos from their award winning albums are highlighted along with a fun story. Sing along, sing along and celebrate abilities is their motto!

Chris teamed up with Joe and John DeMasi, long time friends and Chris’s music counselors right after he finished with Life Goes On. They went on to record four award winning albums and have toured the country extensively promoting their message of inclusion and ability awareness at the numerous concerts, schools, conferences and festivals they perform at every year. They decided to create a show for kids a few years ago and formed Creative Arts and Abilities, a not for profit they use to raise money to make the show. They teamed up with Buc Williams of Rissa Productions and are extremely excited to launch the Forever Friends Show. “While we have brought our message to hundreds of thousands of school children” says Joe, “we feel that a fun kids show is a great way to reach even more kids in this country and around the world.” “This is also a great way to continue the ground breaking work that Chris achieved with Life Goes On in helping to educate the world about what people with so called disabilities can do” says John. “Today, typical kids will run into kids with challenges”, says Chris “and we want to show them what an inclusive world looks like and that we can ALL be friends”.

That wasn’t the case for Chris when he was born back in August of 1965. The doctors advised Chris’s parents to place him in an institution and get on with their lives. The Burkes not only ignored that advise but treated Chris the same as his older siblings, a decision that has led to a remarkable life and talent! While Chris was forced to attend private schools because of the lack of public education for children with Down syndrome when he was growing up, he spent his summers at a camp on Long Island, NY for children with disabilities called Camp Anchor. This is where he met twin brothers Joe and John DeMasi, professional musicians and published songwriters who worked there as music counselors.

Although everyone at the camp was touched by the DeMasi’s music, it was Chris who became their biggest fan and closest friend. “I’ve always wanted to be an entertainer just like Donny Osmond”, says Chris. “To be able to have a music career with the guys who taught me all about music is a dream come true”!

Life Goes On was created after Burke landed the role of a boy with Down syndrome on the ABC-TV movie Desperate. His work so impressed the network executives that the show’s producer was asked to write a show with Chris in mind. The critically acclaimed drama series Life Goes On, which earned Burke a Golden Globe nomination aired on ABC from 1989-1993.

The Forever Friends Show is available for all to view on the web at ForeverFriendsShow.org. The trio are excited to get Chris back to acting and singing, things he loves to do and hope to be able to continue to raise money to create more episodes which will be available to the children of the world at any time with just the click of a mouse. “I love acting, I love singing” says Chris, “ and I love helping people. Remember, it’s not about your disability, it’s all about your ABILITIES that counts. Obstacles are what you see when you take your eyes off the goal. Believe in yourself, work hard and never give up. That is my motto! We all have things we can’t do but be all have things to contribute and of course, we can ALL be Forever Friends!”

For more information, contact
John DeMasi 609-581-2641 jmuso105@aol.com
Joseph DeMasi 701-845-2673 jomidejr@yahoo.com
Or visit www.creativeartsandabilities.org or www.chrisburke.org

Wordless Wednesday: Grace

Planning for now, tomorrow and the future: Newcastle, June

Presented by Jeremy Ward, for Family Advocacy

Saturday 9 June 2012 
Newcastle


This workshop will be of interest to those wanting to plan a long term positive and secure future for a person with developmental disability.


It will be highly relevant for families (including adult brothers, sisters and extended family) and allies of people with disability as well as for workers who are considering the role they could play in supporting families with this planning.

Click here for more information and how to register.

DSE 15% off sale until 30th April

From Down Syndrome Education International, a discount offer from either the UK or US online store:


Order now and save 15% on all DSE publications – including kits in the See and Learn Language and Reading and See and Learn Speech series, Down Syndrome Issues and Information books and our DVDs on inclusive education, infant development and early communication skills.

Later this year, we will be publishing a major new reading and language intervention (handbook and DVD) and several new See and Learn kits. To make some space for the new publications, we are offering 15% off all of our existing books, teaching resources and DVDs through until the end of April (while stocks last).

Details here.

Scrapheap Adventure Ride 2012 in pictures

Scrapheap Adventure Ride 2012, the third outing, was a great success this Easter weekend.  Here is the message from the team, as they are arriving home from Mt Kosciuszko:

What an amazing experience it was this year! 

The Scrapheap family came together again for an amazing cause!

More than 200 photos are in this album already ... they tell the Scrapheap story very well - do check them out (just click on the link - you don't need to have a Facebook account to see them).  Here are just a few - you'll want to see them all!

Congratulations on a great adventure - and thank you for your continued support of people with Down syndrome and their families across NSW!

Scrapheap Adventure Ride 2012 ... starts today!

The 2012 Scrappers are setting out today, heading out to reach McPhersons Plain by Saturday (7th April).

Have a great ride, and fun along the way and stay safe.  

Thanks to the families and support teams who are backing them up, and the people who will greet and support them along the way.

Scrapheap Adventure Ride 2012 on Facebook - follow along.

Sponsorship opportunities are open here.

Research: are termination rates as high as previously thought?

A new research paper,  published by the journal Prenatal Diagnosis, provides more up-to-date information and analysis of the termination rates of pregnancies in the US, in which a diagnosis of Down syndrome has been made prenatally, indicating lower rates than have been found in earlier international studies (60 - 85%, rather than more than 90%).

The researchers concluded that  from US data alone ...


This systematic review presents the largest synthesis of United States data on termination rates following a prenatal diagnosis of Down syndrome. Evidence suggests that termination rates are lower than noted in a previous review that was based on less contemporary studies and had an international focus. Heterogeneity across studies suggests that a summary termination rate may not be applicable to the entire US population.\\The full text of the paper is freely available online here.


Citation:
Jaime L. Natoli, Deborah L. Ackerman, Suzanne McDermott, Janice G. Edwards, Prenatal diagnosis of Down syndrome: a systematic review of termination rates (1995–2011), Prenatal Diagnosis, Vol 32, Issue 2, pp 142–153, February 2012

Dr Adam Wolfberg, a Boston obstetrician, neonatalogist and medical writer explains for The Atlantic magazine, why the data might vary internationally, and over time.  He also speculates that new non-invasive prenatal diagnostic tests might or might not result in the dramatic drop in birth incidence widely anticipated.

Rock solid determination: Mel Eustace

You might recall Melissa Eustace's wonderful smile in the photographs posted each day during the Special Olympics World Games in Athens last June, where she threw herself into the softball competition, or when it lit up the recent announcement that Special Olympics first Asia Pacific Games would be held in Newcastle next year? Well look what she is up to this Easter weekend, leading with that big smile, as told by the Great Lakes Advocate today:

A young woman preparing for her fifth Rock to Rock Ocean Swim at Elizabeth Beach on Easter Sunday, has completed the Sydney Harbour Mini Swim Classic.

She is Mel Eustace, 23, from Turramurra. She also has Down syndrome.

Five years ago Mel just played in the backyard pool and was not able to swim 50 metres. After watching family friend and mentor, John Trevillian do the Rock to Rock swim she said, “I can do that” and started training ... read the Great Lakes Advocate full story here.

Good luck Mel and John!

Wordless Wednesday

Supported Accommodation Innovation Fund: successful applicants announced

Last year, the Australian Government established the Supported Accommodation Innovation Fund to will help address a shortfall in supported accommodation and respite for people with disability.

The twenty-one organisations across Australia that will share $60 million to help build community-based accommodation for adults with severe or profound disability, were announced yesterday by the Prime Minister.

The Fund is designed to encourage innovation and drive change in the way supported accommodation services are provided.

Negotiations for funding agreements are in progress with the successful 21 organisations, which will be responsible for 27 projects, providing 169 new supported accommodation and respite places across the country (19 more places than were initially promised).

Some of the places will be provided for people with ageing carers or people in rural and remote communities, and there are specific projects that will be provided for Indigenous communities.

The new innovative accommodation includes a vertical village with an accessible gym, and homes designed with leading edge technologies based on world’s best practice in sustainable housing, including home automation with motion detected lighting, and electronic devices to enhance hearing and speech difficulties.

This initiative will also help reduce the number of young people with disability who are cared for in nursing homes, or those at risk of placement in residential aged care.

The projects will be completed by June 2014.

A list of all of the projects is included in the Prime Minister's press release - nine will be located in metropolitan and regional NSW.  We know that some people with Down syndrome are amongst those who will be accommodated.

Image: dreamstime.com

Scrapheap Adventure Ride: for Aaron, and for Damien

Peter Baxter and Rod Hemmings, The Tamworth Bitzas, are riding in the Scrapheap Adventure Ride 2012 because they love bikes, to raise funds for Down Syndrome NSW, and for Rod's son, Aaron.  Last year, Rod won the event.

This year, The Northern Daily Leader reports, that they are also riding to honour Damien Wetherall, who died recently, aged 38. Damien and his family were long standing members of Down Syndrome NSW, well known in the district where Jill and Rob often supported young families with children with Down syndrome, right throughout Damien's life.

Click here for a clipping of the full report from the Leader.

To sponsor The Tamworth Bitzas, click here.

I saw someone today ... the You Tube version

We linked this post from the always interesting Dave Hingsburger, in our  World Down Syndrome Day post on 21st March, and described it as 'just right for the day". Now, a colleague of Dave's has taken his words a step further and produced a video montage to illustrate them.

The references to people with Down syndrome not living 'wrongful lives' (a legal term), probably arises because it was written at the edge of the shadow of a 'wrongful birth' case that was decided in Oregon around that time, and caused a great deal of online discussion, as you would expect.

We're linking you back to Dave's blog, Rolling Around in My Head rather than embedding the video, to ensure you get to read his introduction, and in case you are not (yet) one of his regular readers, and would like to see why we like his work so much.

Matthew Calandra at the Gaffa Gallery

Matthew Calandra is one of the Studio ARTES artists participating in the first collaborative residency between Studio ARTES and the GAFFA Gallery, Sydney from 5th April.

Congratulations Matt, and your fellow artists.

Read more about this innovative event here.

Word Down Syndrome Day (2)

Thank you to everyone who help us to celebrate the lives of people with Down syndrome, from our own back yards, right around the world.

Thanks to Wendy (Levi's Mum), who sent these photos from the T4321 event she and a group of friends organised at Sylvanvale Playgroup ...

The invitation was well-received!

Aaron and Mum, Donna

Aaron took a little break 

Ava might have mischief on her mind ...

 ... and found the escape hatch ...

Emily, and Dad Craig

Levi made good his escape!

Riley and his sister Olivia.

Shelley at the Shamptons came up with 21 posts about life with a child with Down syndrome to mark World Down Syndrome Day - a lovely glimpse into the busy life of a family with twins. 

Lauren Potter, one of the stars of Glee (she plays cheerleader, Becky),blogs about World Down Syndrome Day: On World Down Syndrome Day, Speaking Out on How Bullying Hurts and Kills Dreams (republished today by the widely-read Huffington Post)    

More photos and some videos from events across NSW are available from the Down syndrome NSW Facebook page.