Polley family: award, and a video

Adam and Beau Polley are identical twins with Down syndrome. That makes them quite unusual young men.  They have grown up in a close family in rural NSW, that has had its share of  highs and difficulties as occur in all families, and on the land.  Their parents Narelle and John have been very open and generous in sharing the boys achievements and adventures with our members over the years - and now, fittingly the whole family has been recognised with an award at the Australian Grand Dairy Awards, designed to honour "highly skilled and pioneering people" in the dairy industry.

Here is the story from North Coast Town and Country Magazine: 

Farmers who do it their way 

By Mark Gallagher

North Coast Town and Country Magazine, 26^th March 2012

The Polleys are something of a fixture in the dairying scene at Kimbriki, west of Taree, with the fifth generation of the fam­ily now involved in the industry. And two members of that generation - and their parents - have attracted the attention of a na­tional dairy association for being an inspiration to other industry participants. John and Narelle Polley and their twin sons, Adam and Beau, now 21, currently milk 69 cows on their 200 acres at Kimbriki. (Another son, Josh, milks a further 80 cows nearby and John's father looks after more of the combined family herd on another adjacent property.) But lots of families run dairies.

What's inspir­ing about this family is that the Polley twins, Adam and Beau, were both born with Down syndrome, but have spent fulfilling lives growing up and work­ing on the farm thanks to the tireless devotion of their parents. The boys have been in­volved with the cows and calves from an early age, their parents say, and used to prac­tise their milking tech­nique on calves, al­though no milk result­ed.

The boys were expert at copying what happened in the dairy and transferred the routine to some presumably con­fused calves.

However their efforts were not wasted, John says, for when it was those calves' turn to be milked as cows, they knew exactly what was go­ing on as they had been trained by the boys. "It's amazing, really, how they're so good with the cattle," John says.

"They can seem to walk up to the cattle and pat them, and get on with them, where with other people they mostly run away ... It must be just their nature and relaxed way about them, I think."

The boys were never frightened of the cattle and could handle them even if they were wild and just be able to calm them down, he says. The boys saved up and bought a "Mule" farm ve­hicle between them and use it to get around the farm and do their chores. They help out in a number of ways, shifting electric fences, feeding calves, rounding cows up, and collecting and putting hay out — up to 12 bales at a time, they point out to me.

Both boys also have part-time jobs off-farm. The boys' time working away from the farm is good for everyone, giving Adam and Beau vari­ety in their activities, their parents say, and also provides a welcome break for them, be­cause their welfare and safety is a con­stant concern and someone has to keep a bit of an eye on them at all times. The family has recent­ly returned from Melbourne where they |i were presented with an award in recogni­tion of being an inspir­ing dairy family. The trip and accommo­dation were paid for by Dairy Australia as part of the annual Australian Grand Dairy Awards.

The awards, now in their 13th year, are held to "reward outstanding achievement in the dairy industry and recognise the 'best of the best' dairy produce from around the nation. The awards also celebrate the indus­try's commitment to high-quality and innovative products while acknowledging and celebrating the achievements of the highly-skilled and pio­neering people who produce these award-win­ning products," the organisation says. They certainly seem to have got it right with the Polley family - they really are inspiring.

Beau and Adam are clients of BreakThru Employment at Taree, and are the focus of this video about their preparation for working and living independently, including great footage of them at work on the farm.

 

Click here to see the video on You Tube.

Congratulations all round!

Library Thursday: online resources

The Allen C. Crocker Speaker Series is designed for parents and families members seeking quality information from experts on a range of topics related to Down syndrome. 

Click on the title of the presentations below to link to online video of  the 2012  Allen C Crocker Speaker Series from Boston Children's Hospital:

January 3, 2012:   Vision Issues and Down Syndrome

February 27th, 2012:  Thyroid Dysfunction and Down Syndrome

March 6, 2012:  Secrets to Social Success: How to Make and Keep Friends

April 24, 2012:  Health Care Guidelines for People with Down Syndrome

May 1, 2012:  Augmentative Communication Strategies

There is no presentation scheduled for June - the next event will be:

July 23rd  - David Stein, PsyD will present a talk on "Education and Down Syndrome: Translating Neurodevelopmental and Neuroscientific Findings to Practice"

The online video will be available a few days after the event.

All Hallows T4321

John, Kathleen and Emily Collins have, over a number of years, established a tradition at their parish church, All Hallows at Five Dock, with their T4321 event each April, which continues to grow. It is held after morning Mass, and the congregation is invited. 

This year, more than 100 people attended, and they raised over $2,000 for the work of Down Syndrome NSW.  John spoke, and a great morning tea was enjoyed by all, including lots of children.

Our grateful thanks to the Collins family and the clergy and  parishioners of All Hallows.

Webinar on reading research this evening (16th May)

Apologies for the very late notice of this Down Syndrome Education International (UK) webinar to be held this evening (Eastern Australian time).  You can sometimes register up to an hour or so before the webinar starts. The webinar was also offered yesterday in the UK.  The slides from the presentation are available here.


From Frank Buckley, CEO of Down Syndrome Education International:


Join us online this week to learn more about the reading and language intervention study that has recently been published. DSE researchers Dr Kelly Burgoyne and Professor Sue Buckley will be presenting and responding to questions.


Together with colleagues at the Centre for Reading and Language at the University of York, we have recently completed the first large controlled trial of an intervention designed for children with Down syndrome. The first scientific paper from the study is now available. This three year study involved nearly 60 children in schools in York and Portsmouth in the United Kingdom. It was funded by the UK Big Lottery Fund.

Join us online to learn more about the trial and the intervention itself. At these free events, DSE researchers will explain the trail and the design of the intervention, and present their findings. There will also be opportunities to ask us questions.

• 16 May 2012 – 09:30 British Summer Time (08:30 GMT, 10:30 Paris, 12:30 Moscow, 14:00 New Delhi, 18:30 Sydney, 20:30 Auckland) – Register now…

One:one support worker position open in south western Sydney

One of our members has asked us to advertise this position:

The mother of a young man with Down syndrome who lives in South Western Sydney is seeking to employ a support worker to work with her 19 year old son for 20-25 hours per week across 4 days a week. Hours and days can be somewhat flexible.

If you are interested, please call Linda on 9726 5243.  

My Perspective: UK photography competition shortlist

My Perspective is a photography competition showcasing the work of UK photographers with Down syndrome.  It has evolved from the well established Shifting Perspectives series, and is now in its third year.  The Down's Syndrome Association (in London) has just released the 2012 My Perspective short list of 25 photographs online.  Follow the link and you can click on each thumbnail image for a larger view.

The judges will have a hard time picking just one winner.

Wendy Harmer on the NDIS

Writer, comedian, radio presenter Wendy Harmer gives her take on the National Disability Insurance .Scheme, as a National People with Disabilities and Carers Council member:

Yes.  This budget's for you

It’s not only people with a disability who should be cheering the budget’s $1 billion commitment to a National Disability Insurance Scheme.

Every one of us should be applauding like mad.

Because perhaps, finally, Australians are beginning to understand in a profound way that disability is a part of life.

That people with disabilities are not the invisible “other”. They are us. 

... read on here on The Hoopla.

Happy Mothers' Day

Christy Lynch event 14th May 2012 cancelled

Unfortunately, the event with Christy Lynch scheduled for Monday 14th May has been cancelled.

Please forward to anyone you know who planned to attend.

Easy English Course: Blacktown, June

This two day course presented by Scope for NSW Council on Intellectual Disability will provide essential skills to develop written information for people with limited literacy skills. In this interactive course you will have many opportunities to practice your new skills with the expert support from the trainer.

21st and 22nd June 2012
Max Webber Library Blacktown  NSW   2148
Further information and registration details can be found on the Scope website.

NSW Government supports disability services industry reform

Media release from NSW Minister for Disability Services, Andrew Constance, 9th May 2012:

The NSW Government has allocated up to $6.75 million to support disability service providers which are introducing industry reform.

Minister for Disability Services, Andrew Constance, said today's allocation will enable service providers to access a range of supports including expert advice and financial support.

... read on for the full text of the media release.

Library Thursday: new online resources

1. The 8 May issue of IDEAS E News is now available here.

Contents:
Rethinking Employment Support for People with Disability
Arts Access Australia - Art Prize
Australian Clearinghouse for Youth Studies - Youth Disability
Easy English Course
Webinars on School Inclusion for Students with Disability
Development Opportunity for Artists with Disability
National Disability Research and Development Grants
ATSA Daily Living Expo
Stolen Generation Commemorative Flower


2. DSA (UK) Research Symposium - abstracts
The Down's Syndrome Association's (DSA) first ever Research Symposium took place on 2nd and 3rd May 2012 in London. The Symposium was a great success and it is hoped that it will be repeated in the future. The abstract for each paper presented is available to be downloaded here.

Hearing voices: the movement for change in disability care and support

Jenny Macklin, Minister for Disability Reform writes about the budget and the NDIS for Ramp Up.

Webinars on School Inclusion for Students with Disability: Family Advocacy NSW

This series of webinars will be presented by Dr Bob Jackson, for Family Advocacy.


Access information about school inclusion for students with disability via one of 6 webinars - from the comfort of home.  The webinars will be useful for family members of a student with developmental disability exploring the possibilities of an inclusive and successful mainstream school education.

Topic 1:
The why and how of school inclusion will explore research about the benefits of inclusion, what good inclusion involves and how schools and families can work in partnership. The materials will be relevant for families of students of all ages.

Topic 2:
Getting ready for school is suited to families with a son or daughter about to start school who want hints for planning and would benefit from an understanding of how students with disability are supported in mainstream schools.

Topic 3:
Getting ready for high school is intended for families who have a son or daughter who is approaching high school and who want to gain a sense of the transition process, planning and what inclusion at high school looks like.

Each webinar will be between 90 minutes and 2 hours and can be accessed by computer and/or phone. You will also have hard copy materials sent to you by post.

Webinars are free but to ensure that webinars can be interactive, participant numbers will be limited to 12 and you must register to take part.

When will webinars take place?

Webinar 1: The why and how of school inclusion
16 May 2012 - 11.30am - 1.30pm
17 May 2012 - 6.30 - 8.30pm

Webinar 2: Getting ready for school
6 June - 11.30am - 1.30pm
7 June - 6.30 - 8.30pm

Webinar 3: Getting ready for high school
13 June - 11.30am - 1.30pm
14 June - 6.30 - 8.30pm

Family Advocacy hopes that webinar will give more people access to information. If you are interested but new to webinars, don’t worry. You will be sent clear instructions well in advance of the webinar.


Further details here, from Family Advocacy 


Contact details:
Phone (02) 9869 0866 or 1800 620 588 (free call for NSW non metro callers)
Email: workshops@family-advocacy.com
www.family-advocacy.com

National Disability Insurance Scheme: the 2012 budget

Last night's national budget included funding of the roll-out of the National Disability Insurance Scheme for Australia.


From Every Australian Counts, immediately following the Treasurer's budget speech: 


Here's the media release from the Government - with the breakdown on the funds, but the highlights are:

"The Government’s commitment includes:

- $342.5 million over three years from July next year for individually funded packages for people with significant and permanent disability.

- $154.8 million over three years from July next year to employ Local Area Coordinators to provide an individualised approach to delivering care and support to people with a disability.

- $58.6 million over three years from July next year to assess the needs of people with a disability in the launch locations.

- $122.6 million over four years to start preparing the disability sector for the new way of delivering disability services. Building the capacity of disability organisations to adjust to an NDIS is critical to success, particularly in the launch locations in the first stage of roll out.

- $240.3 million over four years to build and operate an NDIS information technology system.

- $53 million over four years to establish a new National Disability Launch Transition Agency to coordinate implementation and manage the delivery of care and support to people with a disability and their carers in launch locations from 2013–14."

More details: Australian Government media release on funding of the NDIS, 8th May 2012

Every Australian Counts media release on 2012 budget:

The Every Australian Counts campaign welcomes tonight’s historic announcement that $1 billion will be allocated over the next four years towards the launch of the National Disability Insurance Scheme.
The Budget allocation includes $342.5 million over three years for individualised packages for people with a disability and their families.



Every Australian Counts National Campaign Director John Della Bosca said: “Every night around Australia aging carers go to bed worried about what will happen to their son or daughter with a disability when they can no longer provide care and support.


“I know tonight they will sleep a little easier knowing the NDIS is on its way.”


“Tonight the Commonwealth has laid some strong foundations to make the NDIS real. The scheme is being launched sooner than we expected. For 20,000 people with a disability around the nation help is finally on its way,” Mr Della Bosca said.


“In a tight fiscal environment, committing $1 billion to disability reform represents an historic improvement and a positive change for Australians living with disability.


“For too long, disability has been in the too hard basket. The waiting lists for equipment, the lack of respite care and the underfunding of services has been a national disgrace. Today we start to right that wrong.
“The plan outlined tonight relies heavily on cooperation between the Federal, State and Territory governments. I know that State Ministers around the country support the NDIS. They want to see it become a reality. So we look forward to everyone sitting around the table and working out how to make the NDIS a reality.


“Our Every Australian Counts campaign supporters have built a strong disability movement. Our supporters have worked tirelessly to put the NDIS on the political agenda and to keep it there.


“Tonight’s announcement is a tribute to their hard work. Tonight they know that their voices have finally been heard.”


How will the NDIS work? Video from Every Australian Counts, 8th May 2012


Other responses:


Disability representative organisations Australian Federation of Disability Organisations and People with Disability Australia welcome funds for NDIS


Australian Council of Social Services: "... ACOSS is also pleased to see funding set aside in this year's budget to launch a national disability insurance scheme a year ahead of schedule. This is long overdue and great news for the great many people in Australia with disability, and their families and carers."


Stephen Lunn, writing for The Australian
Elizabeth Manning on The Conversation

• Full transcript of Treasurer Wayne Swan's Budget speech and this year's Budget papers is at www.budget.gov.au.

Mothers Day gallery - photos welcome

You remembered that Mothers Day is this coming Sunday, right?

If you'd like to contribute a photo for our Mothers Day gallery, please email it to blogeditor@dsansw.org.au before Friday 11th.

No names or caption will be posted. Just photos of Mums with their sons and daughters who have Down syndrome, that will speak for themselves (of course others can be in the photos too).

Thanks!

New dance and performance classes

Lisa Stein has qualification and experience as a dance teacher and in working with people with disabilities.  She is offering dance classes for people with disabilities in two modes:

1. Lisa will come to a day service each week to teach dancing for 1 hour
2. Class  at St.Clair Neighbourhood Centre Saturdays 12-1pm

Discussion evening with Christy Lynch: Sydney, 14th May

UNFORTUNATELY THIS EVENT HAS BEEN CANCELLED.

(posted 6.25 pm Friday 11th May 2012).

Christy Lynch is recognised internationally for his pioneering work in achieving integrated employment for individuals with a disability. The evening will cover an overview of the open labour market employment model with support for people with intellectual disabilities.

7:00pm – 9:30pm, Monday 14^th May 2012

Ryde Eastwood Leagues Club

117 Ryedale Road, West Ryde

Enquiries: 

Down Syndrome NSW on 9841 4411 or email workshops@dsansw.org.au

Click here to download a flyer and registration form

or register online here.

Clinical research and information sharing at Adult Down Syndrome Centre

The Adult Down Syndrome Centre in Chicago has been a major source of health information and expertise for more than 20 years - its directors are the authors of the highly regarded and popular books, Mental wellness in adults with Down syndrome and  The guide to good health -  for teens and adults with Down syndrome (both available for members to borrow from our library).

Reflections on their role in research has prompted this explanation of how they are currently using their clinic experience to contribute to knowledge and good practice in health care for adolescents and adults with Down syndrome. Links to other research centres and projects are provided.

from the Adult Down Syndrome Centre web page

Speech and Language Therapy for Adults with Down Syndrome: article

Speech and language therapist Jill Petersen's article was published online this week by the Down Syndrome Research Foundation, in Vancouver.

She focuses on using strengths to help reduce challenges.

Two families: three people with Down syndrome

Two families, one in the US, one in the UK talk about living with a person with Down syndrome, over two generations:

Living well with Down syndrome 

Washington Post columnist George Will shares the story of his son Jon, who turns 40 on May 4.

... Down syndrome did not alter the trajectory of his life; Jon was Jon from conception on ...

Photo essay format
Column format

Has anything changed? One family, two stories
Dimensions (UK) Family Consultant, Liz Wilson, looks back at the life of her 48 year old brother and her 15 year old daughter who have Down Syndrome but experienced different challenges in very different times.
Click here for the article.

The NDIS is worth the investment – here’s why

Elizabeth Manning's analysis and commentary on the National Disability Insurance Scheme is published by The Conversation today.

Ms Manning is a lecturer in economics at Deakin University in Victoria, and the mother of a daughter with cerebral palsy.  Her conclusion to this article:

Under the NDIS, the cost burden faced by individuals living with a disability and their families could be spread thinly across the entire population. Everyone would then effectively be insured against some of the financial burden of unexpectedly acquiring a significant disability.


I hope next week’s budget delivers for families like mine who are counting on a properly funded and well-structured NDIS.

'Out of the Blue' exhibition: 4 works by Fraser Pollock

'Out of the Blue' will feature paintings, drawings, photography and sculpture from a dozen artists who are pretty edgy and really prepared to push through to make work that is often difficult to put into any fixed category. 

One of the artists is Fraser Pollock who ... 'has four fantastic drawings with a beautiful dynamic of line,and a great spatial feel. He just gets better and better.' Peter Fay, curator

The Sheffer Gallery (38 Lander Street, Darlington 2008) 

2 - 12 May with the opening drinks on Sat 5th from 2 - 6pm. 

The Gallery is opened Wed - Sat, 11 - 6pm. 

Shave a Bunny for Down syndrome!

Here's a really fun fundraiser for Down Syndrome NSW, with three South Sydney Rabbitohs -  a DS NSW event in collaboration with Souths Cares!

On Thursday 7th June, Matt King, Dave Tyrrell and Chris McQueen of the South Sydney Rabbitohs will be shaving their heads live on Channel Nine's NRL Footy Show, and they are asking YOU to sponsor them!

DS NSW Shave a Bunny web page - watch the video about why Matt, Dave and Chris are supporting Down Syndrome NSW, and sign up for sponsorship.

Shave a Bunny Facebook page - "like' the page to help spread the word and join in the fun.

For all inquiries about the Shave a Bunny campaign and Down Syndrome NSW, please contact jesschalker@gmail.com

Media on NDIS following nation-wide rallies

Attention in the media has turned to how the National Disability Insurance Scheme (NDIS) will be implemented following Monday's 'Make It Real' rallies across Australia, and the Prime Ministers' commitment. Here are some examples:

7:30 ABC TV (Monday 30th April) 


NDIS is important, let's take the time to get it right (Opinion piece on ABC's The Drum, by Stella Young)


Macklin reassures treasurers on NDIS (Sydney Morning Herald today)  


Designing the National Disability Insurance Scheme (Minister's media release 1st May 2012)  

Melbourne rally - photo: The Drum

And video from rallies is also appearing online:

Dougie Herd tells Australia why we need an NDIS at the Sydney Rally 

Tim McCallum sings your the voice at Make it Real Rally  

Paula Kluth's '30 tips in 30 days': for teachers

Now that school is in for Term 2, kids are more settled in to new classes, and teachers will better know their strengths and where support is needed ...  this a good time to pass on the link to Paula Kluth's series of '30 tips in 30 days'.

The tips focus on the needs of students with autism, but plenty of these effective strategies and reminders will support many with Down syndrome too, and their teachers.

Currently at 28 of the planned '30 Tips', the series is an excellent, concise and practical archive that teachers will appreciate.  Just enter 'tip' into the search box and the whole series will come up (in reverse order).

DSE International reading trial

From Down Syndrome Education International News this week:

A landmark research study has shown that a targeted teaching intervention accelerates progress in reading and language development for children with Down syndrome. The primary results of the study are now available online, ahead of publication in the Journal of Child Psychology and Psychiatry. The study was the first large controlled trial of an intervention designed for children with Down syndrome and was led by researchers at Down Syndrome Education International working with colleagues at the Centre for Reading and Language at the University of York, UK. DSE will be publishing a handbook and other resources, and providing training and support services, to help teachers successfully implement the new reading and language intervention.


Read DSE International's full news report here.


Image: DSE International News

Citation:
Kelly Burgoyne, et al, Efficacy of a reading and language intervention for children with Down syndrome: a randomized controlled trial, Journal of Child Psychology and Psychiatry.
Article first published online: 26 APR 2012 DOI: 10.1111/j.1469-7610.2012.02557.x


The full text of the research paper is available online here.

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.