The BIG EVENT 2011

The NSW Chapter of In Control Australia proudly presents:

Self-directed Support: Making it Happen

10th and 11th May 2011, West Ryde

This two-day event will bring together Steve Dowson (UK), speakers from across Australia, people with disability, families, carers, advocates, policy makers, support services, government & administrators to

explore self-directed support in NSW.

Please register your interest by emailing Michael Bleasdale: michaelb@pwd.org.au 

Information about In Control Australia is available from the website: www.incontrol.org.au

Family Advocacy event for parents of students transitioning to secondary school

Why stop now: Inclusive education at High School

4th May 2011, West Ryde

• Would you like to learn about how inclusion can work for students with disability in a mainstream High School setting?
• Are you interested in curriculum adjustments that work?
• Would you like information about the transition to High School for students with disability?

Contact Family Advocacy to register your interest or for more information:
Telephone (02) 9869 0866 or free call 1800 620 588 (NSW only)
www.family-advocacy.com
Email: workshops@family-advocacy.com

Kayte Brimacombe photography exhibition One in Ten

From the Guardian.co.uk:

As many as one in ten people with Down's syndrome have the additional diagnosis of autism. Here we present Kayte Brimacombe's photographs of ten children and adults with the dual diagnosis, while their carers discuss daily life. Brimacombe's exhibition, One in Ten, is at the Oxo Gallery, London, until 27 March as part of a group exhibition, Shifting Perspectives, to coincide with Down's syndrome awareness week (in the UK)

Family Advocacy extracts 'a final word from NSW politicians'

In the run-up to Saturday's NSW election, responses from NSW politicians of three persuasions have been posted on its website by Family Advocacy.  Each party was asked to state its position on Family Advocacy's campaign priorities in the light of Stronger Together 2 document released by the NSW Government late in 2010.

From Family Advocacy's home page, the links are on the right of the screen, under the 'Hot issues' tab.

Aiming High Futsal (5 a-side-soccer) - eastern suburbs

A new opportunity - for men and women aged 16 years and over, with a disability

Randwick City Football Club

Competition to run for 8 weeks during winter. Season starts April.

Games played Saturday mornings 11.30am-12:30pm

Free coaching and instruction

Maroubra Memorial Bowling Club

Corner of Malabar Rd and Mons Ave

Cost - $20 – $30 depending on age

Email Ben Folino to register: bfolino@bigpond.com or  0419 973 631

Invitations to participate in research studies

From time to time, Down Syndrome NSW is able to put researchers in touch with people with Down syndrome and their families to help with recruitment of participants for their studies. Two Sydney studies are currently recruiting:

Expression of emotions study - Macquarie University (March 2011)
Participants with Down syndrome over 6 years of age are being sought by a psychology honours student.  Further information about the project is available here.
This research project has been approved by the Macquarie University Human Ethics Committee.

Memory development in preschoolers and adults with Down syndrome - University of NSW (throughout 2011)
We are currently looking for participants aged 3-5 years old with Down syndrome for a study at the University of New South Wales.
The study would involve your child playing a series of memory games with pictures and toys. Your child will also participate in a standardized task to measure cognitive and communication skills.
The study is on-campus and $20 petrol costs and paid-parking will be reimbursed. Your child will also get to choose a small toy to take home at the end of the session.

From March 2011, a second stage of this project will be implemented, with adult subjects:

We are currently looking for participants aged 20-50 years old with Down Syndrome for a study at the University of New South Wales.
The study will involve participating in a series of memory tasks with pictures and objects and a standardized task to measure cognitive and communication skills.

If you’re interested in further information about either part of the study, or would like to participate, please contact Lynette Roberts on  0405 721 076 or at lynette.roberts@unsw.edu.au

Wordless Wednesday

T4321 Bourke, NSW 2011

Cruz Ryan is well known and loved in his home town of Bourke,

in far north western NSW. 

His mum, Lynette Gooch organised a T4321 event with her colleagues at

Bourke Shire Council ...

... with a little help from Cruz ...

 ..... and the wonderful support of local businesses.....

... who helped to raise close to $600 towards the work of Down Syndrome NSW,

while they celebrated World Down Syndrome Day 2011

Business participating included:

Willoughby’s Butchery 

Essential Energy

Darling River Medical Centre

Bourke Shire Council

Indigo hair

Culhanes Clothing Store

Our thanks to Lynette, Cruz, donors and the generous community of Bourke.

World Down Syndrome Day Statement from Parliamentary Secretary for Disabilities and Carers

SENATOR JAN McLUCAS
Parliamentary Secretary for Disabilities and Carers

21 March 2011
World Down Syndrome Day

Today marks the sixth anniversary of World Down Syndrome Day, an opportunity to learn more about Down syndrome and to recognise the important role that people with this condition play in our society.

Parliamentary Secretary for Disability and Carers, Senator Jan McLucas, said that today was a great opportunity for people across Australia and beyond to take the time to become more aware about Down syndrome.

“It is important that we work to create a more inclusive community that more fully embraces people with Down syndrome and welcomes their participation in society,” Senator McLucas said.

According to the Australian Institute of Health and Welfare, the rate of Down syndrome among infants in Australia is 11 per 10,000 births.

Senator McLucas said the Australian Government has committed $122 million to providing better services to children with disability, including those with Down syndrome, through the Better Start for Children with Disability initiative.

“Under this program, from 1 July this year, eligible children aged under six diagnosed with Down syndrome, cerebral palsy, Fragile X syndrome, and sight and hearing impairments, will have access to up to $12,000 in funding to pay for early intervention services,” Senator McLucas said.

“The funding will provide more affordable access for families and carers to early intervention services such as speech pathology, occupational therapy, orthoptics, physiotherapy, audiology and psychology.

New Medicare items will also be available for children up to 15 years, including up to 20 treatment items for each eligible child.

Executive Officer of Down Syndrome Victoria, and mother of a child with Down syndrome, Catherine McAlpine, said the Better Start program is a much welcome investment that would help children with disabilities and their families.

“The importance of early intervention in the development of children with Down syndrome s paramount.”

“I look forward to the commencement of the Better Start program and the benefits it will bring many children with not just Down syndrome, but a range of other disabilities, and their families.”

Senator McLucas said the Australian Government’s Better Start program would help address the need for greater support for children with disability.

“Our initiative will help to relieve some of the financial pressure faced by families by making early intervention services much more affordable and accessible. “

“Evidence shows that young children diagnosed with disabilities that affect their evelopment benefit from early intervention to give them the best possible start in life.”

“Access to high quality services early in childhood is critical for helping these children to better participate in everyday life and attend school.

“This package is just one part of our Government’s commitment to providing better support for people with disability.”

2011 World Down Syndrome Day Awards: Down Syndrome International

On Monday 21 March 2011, World Down Syndrome Day, Down Syndrome International (DSi) is delighted to announce the recipients of the 2011 World Down Syndrome Day Awards.

2011 is the second year of the World Down Syndrome Day Awards, presented to individuals or organisations whose voluntary, professional or scientific activities have strengthened and enriched the lives of people with Down syndrome, or contributed to scientific advancement related to Down syndrome.

This year’s recipients are as follows:

Voluntary and Professional Awards
4 individuals with Down syndrome receive awards for outstanding self-advocacy:

Ty Belnap (Australia) – Record breaking swimmer, surf lifeguard and stage and movie actor.

Mia Farah (Lebanon) – Self-advocate and international disability rights campaigner.

Malgorzata Jablonska (Poland) – Stage and movie actress, performing in many European countries.

Sujeet Desai (USA) – Accomplished musician and self-advocate with worldwide reputation.

3 individuals receive awards for outstanding professional activities:

Dr Branka Butorac (Croatia) – Headmaster of Down Syndrom Centar Pula, Croatia.

Driton Bajraktari (Kosovo) – Co-Founder and Executive Director of Down Syndrome Kosova, Kosovo.

Pauline L`vovna Zhiyanova (Russia) – Special Education Teacher, Downside Up, Russia.

4 organisations receive awards for outstanding professional activities:

Ikatan Sindroma Down Indonesia (ISDI) (Indonesia) – Down syndrome support and advocacy group.

Yaldei Tismonet Down (YATED) (Israel) – Down syndrome parent support organisation.

Down Syndrome Foundation Nigeria (Nigeria) – Centre for children and adults with Down syndrome.

Robert Owen Communities (UK) – Charity supporting over 350 adults with learning disabilities.

2 individuals receive awards for outstanding volunteer activities:

Agnieszka Tucholska and Zofia Aleksandra Tucholska (Poland) – Young sisters with volunteering experience assisting people with Down syndrome and other learning disabilities.

1 individual receives an award for an outstanding contribution to raising awareness of Down syndrome:

Casper Lja (Canada) – 23 year old man who cycled 7,444 kilometres across Canada to raise awareness and money for Down syndrome advocacy.

Scientific Awards

1 individual receives an award for outstanding contribution as a medical professional in the field of Down syndrome:

Dr S Suresh (India) – Co-Founder and Chief Medical Director, MediScan Systems, Chennai, India.

President’s Special Recognition Award

2 individuals receive special awards for lifetime achievement in Down syndrome advocacy:

Penny Robertson OAM (Australia) – Pioneer of Down syndrome advocacy in Australia, Founder of Australian International School, Indonesia and Co-Founder of Down Syndrome International.

Dr Balbir Singh PBM (Singapore) – Founding Chairman of Down Syndrome Association Singapore, pioneer of World Down Syndrome Day programme and Social Service and Disability sector advocate.

All recipients are invited to a formal presentation of World Down Syndrome Day Awards for the years 2010-2012 taking place at the 11th World Down Syndrome Congress (WDSC) in Cape Town, South Africa from 15-17 August 2012.

A selection of World Down Syndrome Day media

Channel 10's The Circle featured an interview with Dr Jan Gothard and Justin Marshall, about Greater expectations, published today, to celebrate World Down Syndrome Day here in Australia.

A new photo montage from the UK to mark World Down Syndrome Day 2011, was compiled by Penny Green, Director of the Down's Heart Group

Julia Hassell and Keira Maher's love of dance is highlighted in this report from the Hills News

Not really about World Down Syndrome Day, but nice timing in the publication of this story and photo of Prince William meeting a young woman with Down syndrome in Grantham, Qld, from today's Courier Mail

So little and so huge - a blog post for World Down Syndrome Day, giving one grandmother's perspective on what a grandchild with Down syndrome has brought to her life.

And in case you haven't seen it, here is the link again to the Down Syndrome International video, Let Us In

‘T4321’ World Down Syndrome Day events today

Down Syndrome NSW would like to thank all the schools, childcare centres and workplaces holding ‘T4321’ World Down Syndrome Day events today including  ....

Tweed Heads Centrelink Call Centre

Commonwealth Bank Cessnock Branch

St Joseph the Worker School (Auburn)

St Benedicts Catholic Primary School (Yeppoon, QLD) 

Garfield Street Children’s Centre (Five Dock)

Life, Marriage and Family Centre (Catholic Archdiocese of Sydney) 

Shore Prep

Burraneer Public School

Teddy Bears Educational Child Care Centre

Wellington Public School
Bourke Shire Council

... and everyone who is celebrating today  ... in whatever way.

We wish you all a wonderful World Down Syndrome Day.

New Prenatal Testing: Are You Ready?

We at DownSyndromePregnancy.org challenge you to make a personal action plan so that the day the new test will launch expectant parents across the nation will have the support and information they need to truly understand Down syndrome.

Learn more about this well developed and practical action plan here.

Gluten sensitivity? Adult Down Syndrome Clinic post

Some thought provoking ideas on gluten sensitivity from the Adult Down Syndrome Clinic's Facebook page today.  It is well established that coeliac disease is more common in people with Down syndrome, but we do hear about people with Down syndrome who test negative for coeliac disease, but who respond well to a gluten free diet.

The Adult Down Syndrome Clinic is in Chicago, and is known world-wide.  Drs Brian Chicoine and Dennis McGuire are the authors of the highly regarded Mental Wellness in Adults with Down Syndrome and The Guide to Good Health (for Teens and Adults with Down Syndrome) - both books can be borrowed by Down Syndrome NSW members from our library.

People with Down syndrome in the news

Man with Down syndrome uses CPR skills to save friend
A man with Down’s Syndrome saved the life of his best friend – after learning resuscitation techniques by watching TV’s Casualty.

Gerard McKenna was walking with Stephen Chard to their favourite takeaway when Stephen suffered chest pains and collapsed. Gerard, who is only 5’, caught 6’1” Stephen and lowered him to the ground, before putting him into the recovery position and giving him chest compressions.  Read the whole story from the Manchester Evening News here.

First person with Down syndrome in Ireland to pass driving test
One very happy young man is in the BBC news for being the first person with Down syndrome to have a full driving licence in Ireland.

Let us in!

Down Syndrome International presents the global video event Let us in! in partnership with 45 countries for World Down Syndrome Day 2011.

You will catch a glimpse of our contribution very early in the video.

Please watch this video and help us create a single global voice for advocating for the rights, inclusion and well being of people with Down syndrome on Monday 21 March.

Diana and Alice in Uzbekistan

If you have enjoyed the film Body and Soul, you might like to catch up with Diana on her adventures in Uzbekistan with Alice, bringing it to a whole new audience:

Alice and Diana's Awesome Adventure in Uzbekistan (blog) or follow them on Facebook

Down Syndrome NSW members can borrow Body and Soul on DVD from our library.

World Down Syndrome Day dinner at Warners on the Bay ...

The Down Syndrome Hunter group kicked off celebrations of World Down Syndrome Day 2011 with a dinner for families, carers and friends and friends at Warners on the Bay on Satuyrday 12th ......

"We laughed, we ate, we drank (soft drink of course!), we talked ourselves silly, and we met new friends and enjoyed catching up with old.

We celebrated being proud parents of our beautiful children with Down syndrome and their incredible siblings. We especially loved welcoming baby Christian who brought his mum and dad along to meet us all and join the fun. It was a special night to share with wonderful people and to welcome a brand new family to DS NSW and our own Hunter group - thank you baby Christian for keeping us focused on why we were celebrating as your beautiful smiles melted our hearts all over again.

Meg did a great job bringing us all together from five different local government areas in the Hunter."
 
And so much fun was being had, that everyone forgot to take pictures!

T4321... BLAST OFF!!

Put on Your Kettle for World Down Syndrome Day, 21st March 2011!

Meet Gerard: Tropfest winning actor. Recent winner of Newtown’s Short and Sweet Festival. Soon to study at NIDA. Happens to have Down syndrome.*


People with Down syndrome (also known as Trisomy 21), like Gerard, are now living more confident, happy independent lives than ever dreamed possible.

To celebrate that fact and to foster greater community acceptance and understanding, the first World Down Syndrome Day was declared on March 21st, 2006.

Now in its 6th year, hundreds of organisations around the world have joined in the celebrations with a variety of events. In NSW alone, Tea for 321 (T4321) was launched with over 60 events and over 1000 people taking part across NSW!

We are encouraging one and all to join in on the festivities on March 21st, 2011 by holding a morning or afternoon tea at your home, school, workplace, club, church, Local Park, Cafe or wherever you please! Grab your family, friends, colleagues, fellow club members, or even your local MP and tell them you’re putting on the kettle for a great cause. All you need to do after that is crack open the Tim Tams, bake some scones, order some lammies - and enjoy yourself!

To get your hands on the essential fundraising kit, please contact Priscilla@dsansw.org.au  or call 02 9841 4404.

All donations raised from the T4321 morning tea will go to Down Syndrome NSW, an independent charity supporting people with Down syndrome and their families.

Donations over $2 are tax deductible and can also be made at http://www.dsansw.org.au.

*Gerard O’Dwyer pictured with Genevieve Kelly, Tropfest winner for “Be My Brother”, starring Gerard, in 2009

FOR MEDIA ENQUIRIES PLEASE CONTACT:

JESS CHALKER on 0434 840 212 / e: jesschalker@gmail.com

www.dsansw.org.au

Interviews with Jan Gothard and Justin Marshall: ABC Radio National and Channel 10

Jan Gothard, author of Greater expectations: living with Down syndrome in the 21st century, and Justin Marshall who wrote the "welcome" to the book, was interviewed by Richard Aedy, on Life Matters (ABC Radio National) this morning.  You can hear and/or download this excellent interview here. 

Comments on the interview will be posted here on the Life Matters web page.

There are just three days remaining to order a copy at a special World Down Syndrome Day discount - click here for details of the discount and an order form.

Addition 21/2/2011:  Click here for the TV interview with the team from Channel 10's The Circle

Reminder: ENT health for people with Down syndrome - Saturday 26th March

Please register as soon as possible if you wish to attend the talk by Df Phillip Chang and Dr harry Koumoukelis about Ear, nose and throat health  for people with Down syndrome at St Vincents Hospital on Saturday 26th March.  Register online here, or phone 9841 4411 or email  workshops@dsansw.org.au A detailed flyer  is available here.

Down Syndrome NSW Calendar 2012

2012 Calendar

It's time to select your photos for next year's calendar and send them in.

All members are invited to submit photos for inclusion in the 2012 Down Syndrome NSW calendar.

Digital photos are preferred - please send your photos as attachments, in .jpg format at the highest resolution you have available (file size up to a total of 2 Mb per email message). Email your photos and details to Angela, at admin@dsansw.org.au  with '2010 DS NSW calendar photos + your family name' in the subject line.

Prints may be submitted if you do not have access to digital photos - please include a return address if you need your prints returned. Please do not send in your only print copy of a precious photo!

We would like to have images of people of all ages with Down syndrome, babies to elders - doing whatever interests them, in family groups, with siblings, friends, at work, play, serious or smiling. You can submit more than one photo, but we cannot guarantee to have space for multiple photos from each family! Please tell us who everyone is in each photo. We need to receive permission from each person appearing in a photo, for it to be used by Down Syndrome NSW. Please acknowledge that photos submitted for the calendar may be used for other promotional purposes.

Photo submission will close on 31st May 2011.

Growing older with Down syndrome: Ballina, 6th and 7th April 2011

Two regional NSW events for families and carers of older people with Down syndrome

1. Growing older with Down syndrome
 - information and discussion for parents and family carers of people with Down syndrome aged in their 30s and older ~ adult siblings are welcome

  How might growing older impact on our son or daughter?

  What do we need to know?
  What supports might we need, and where will we find them?
  Just how common is dementia?
  What should we look for?

9.45 am - 2.00 pm

Wednesday 6th April 2011

Ballina RSL Club
240 River Street Ballina, NSW

There is no charge for this event, but booking is essential for catering.
Morning tea and a buffet lunch will be provided.

Contact Down Syndrome NSW on 9841 4411 or 9841 4407, or email info@dsansw.org.au
to reserve a place.
 
Click here for a flyer

2. Caring for older people with Down syndrome
- information and resources for people working to support people with Down syndrome aged in their 30s and over, and their families

  How might growing older impact on men and women with Down syndrome
  What do we need to know?
  What supports might they need, and where will we find them?
  Just how common is dementia?
  What should we look for?
  How should we care for people with dementia and Down syndrome?

9.30 am - 2.30 pm
Thursday 7th April 2011

Ballina RSL Club
240 River Street Ballina, NSW

Cost: $55 per head; $110 for three participants from one organisation (inc. GST)
Booking is essential
Morning tea and a buffet lunch will be provided

Click here to download a registration form to book your place.
 
Enquiries for both events: phone Miriam at Down Syndrome NSW on 9841 4407, or email info@dsansw.org.au

Wishing Gerard well in the Short+Sweet Awards finals this weekend!

The 10th anniversary Short+Sweet Gala Awards Final on Friday 11 and Sat 12 March at the Parade Theatre, Kensington.

Gerard O'Dwyer will be there after recent success in the heats:

Beautiful is directed by Lisa Eismen and stars Gerard O'Dwyer and Kate Hardy. Gerard has Down syndrome and won best actor at Tropfest for the the film “Be My Brother”.

Writer of Beautiful, David Bulmer, has a  daughter who has Down syndrome. The play won its heat at Crash Test Drama.

Beautiful also took out the People’s Choice vote for the week at Newtown with an astonishing 29.03% (adj) of the audience vote, which means playwright David Bulmer has notched up the extraordinary achievement of writing the two most popular plays in the festival – Doing it for the Penguins (Top 110 Week 3 at Newtown Theatre) with 30.12% (adj) and Beautiful. Well done David !

We wish you well, Gerard and the Beautiful team.

Short+Sweet Gala Final Fri 11 and Sat 12 March 7.30pm Parade Playhouse (NIDA)
215 Anzac Parade, Kensington

Tickets $42/36 Bookings 1300 795 012 or www.ticketek.com.au

Full finalists details visit: www.shortandsweet.org/shortsweet-theatre/sydney/gala-final  

Tea 4321 in the park, at Queanbeyan!

Sunday 20th March is shaping up to be a big day for T 4321 events celebrating World Down Syndrome Day.  Here is news of another regional NSW event .... keep news of your events coming, and we'll keep posting them.

Tea for 3x21 chromosome

Fundraiser for World Down Syndrome Day raising awareness and funds to support children with Down syndrome around the world.

Afternoon Tea

Sunday 20th March
2:30 - 5pm

Tea, coffee, and yummy food provided

Queanbeyan Park Playground
(playground is enclosed within a childproof fence)

Beside tennis courts on Campbell St Queanbeyan

All welcome. Please join us to celebrate beautiful children with a unique genetic make-up

A small donation would be appreciated

World Down Syndrome Day in beautiful Narrabri, NSW

Narrabri will again celebrate World Down Syndrome Day

Join us at Narrabri Lake at the BBQ's closest to The Wilga.

If it rains we can lunch at the Wilga instead.

Sunday March 20th
at 12 midday

Once again BYO lunch and drinks and favourite games.
Cricket gear, boules and bocce will be there (maybe croquet) ......

Tips for Healthy Living for People with Down Syndrome: webinar

Joan Medlen and Phronesis Publishing are celebrating World Down Syndrome Day with a webinar (seminar on the Web)

Tips for Healthy Living for People with Down Syndrome
 Saturday, March 19, 10 - 11 am Pacific Time (US)
(for early risers on the east coast of Australia that will be 4.00 - 5.00 am Sunday 20th)

Where: Log in information sent after registration

Cost: $15.00 (US)

International participants welcome with USB Microphone/headset (no telephone access)

Details and registration links:
www.downsyndromenutrition.com

T4321 Dinner: DS NSW (Hunter), Saturday 12th March

Celebrate World Down Syndrome Day in the Hunter region, by joining us for T4321 DINNER for parents, carers, family, friends - anyone you would care to invite ....

Warners at the Bay

Warners Bay

Hillsborough Rd., Warners Bay

Saturday, 12th March from 6.30pm

A relaxed, easy night at the pub!

Meals are from the Bistro & ordered whenever you want (or not!)

Come for as little or as long as you like

We love to meet new people and catch up with old friends at this great night

• Ring or text Meg on 0413 515 274 for bookings and more information

Getting children with Down syndrome to answer questions

Jennifer Bekins blog Communication Skills for Life is always worth reading.  recently she has posted the first two parts of a series on supporting children with Down syndrome to learn the skill of asking  questions.

5 Words Make Such a Difference

'Nan P' began writing her blog, Journey into Grand-Motherhood with the birth of her first grandchild,Cathal, born with Down syndrome and a significant heart problem.   This week she writes on the birth of Cathal's little brother, Oisin, how cathal has taken to being the older sibling, and what she has learned as a grandmother.

Inclusive Research Seminar - Centre for Disability Studies

Thursday 31 March 2011 9am – 4pm

You are invited to attend a one day seminar to learn more about Inclusive Research - where people with disabilities and their allies have control over the research process and outcomes.

Income earners: $44 (includes GST)
Non income earners: $15 (includes GST)
(Registration includes morning tea and lunch)

Charles Blunt Conference Room, Royal Rehabilitation Centre Sydney
227 Morrison Road, Ryde

Venue wheelchair accessible.

Phone:  Centre for Disability Studies, 8878 0500 Email: mcarrick@med.usyd.edu.au  Fax: 9807 7053

iVOTE: new online voting option

iVote is a new option for casting your vote online. It has been set up by the NSW Electoral Commission in time for use in the NSW Election scheduled for 26th March 2011.

People with Down syndrome might qualify to use the iVote option:

"you are unable to vote without assistance or have difficulty voting at a polling place because you have a disability"

Details and instructions are available from the iVote website: http://www.ivote.nsw.gov.au/

Key Word Sign Group Monthly Workshop (Hastings district - Wauchope)

Come along and join teachers, parents, grandparents, teacher’s aide, friends, therapists etc to our FREE key word signing group.

5.30pm to 7pm Wednesday 23rd March
(because there are 5 Wednesdays in March)

3 Enterprise Place, Wauchope
(off Bago Road industrial area)

Everyone is welcome and please feel free to pass on this information. We have lots of fun, it is easy to learn – we play games, speak and sign, sign and play and it doesn’t matter if you know 1 sign or 30 or 100 you will learn about 20 – 30 new words every meeting or get to practice some forgotten signs.

Please email/ phone/ text Julie Langeveld if you are interested in coming along to our meetings and RSVP for numbers - all materials supplied.

• Contact details: Julielangeveld@gmail.com  or 0402 729 319

Free event - Puberty Sexuality and Relationships: Family Planning NSW

Following the success of the first Family Planning NSW (FPNSW) parent forum, Puberty Sexuality and Relationships, a further three forums will be held in 2011.

Dubbo: 2nd April
Newcastle: 14th May
Ashfield: 22nd October

The forums are free for parents / unpaid carers / foster parents / relatives of children and young people with intellectual disability.

Registrations are now open for the Dubbo forum. For more information and online registration please visit: www.fpnsw.org.au/parentforums

Please note the forum is not intended for service providers. A separate 1 day training session for service providers, Introduction to Sexuality and Disability, will be conducted in Dubbo on 1st April (the day before the parent forum). More information is included on the back of the parent forum flyer.

For more information about other service provider training please contact the FPNSW Professional Education Unit: ph (02) 8752 4349 or email education@fpnsw.org.au

Enquiries:

Rob Hardy: robh@fpnsw.org.au  or (02) 8752 4306

Nicola Pilkinton: nicolap@fpnsw.org.au or (02) 4016 1808

Calling all aspriring comedians, writers and performers ...

Riverside Theatres and the British Council are offering emerging performers, writers and comedians the opportunity to participate in a workshop with UK comedian Francesca Martinez.

Francesca will work with participants on the process of harnessing creative courage, transforming life experiences, pushing the boundaries of performance and connecting with audiences.

Participants will have the opportunity to purchase a discounted ticket to Francesca’s performance at Riverside Theatres on Saturday 26 March, 2011.

This workshop is suitable for people with mild to moderate intellectual and physical disabilities and those without a disability.

Thursday 24 March, 2011

1 – 4pm

Lennox Theatre

Riverside Theatres

cnr Church and Market Streets, Parramatta

Places are limited.  The workshop is free.

To register, please contact Alison Richardson on 8839 3359 or email wapd_riverside@parracity.nsw.gov.au

For information about Francesca Martinez:   http://www.francescamartinez.com/

What's on in March?

Here we are in March already, with several events in our calendar - here's a recap on what's on this month:

Healthier Lives Forum: 9th March, Newcastle

Playing to their Strengths - at school: 17th March, Rosehill, and 31st March, Canberra

Playing to their Strengths - at home: Saturday 19th March, Rosehill

ENT health in children and adults with Down syndrome: Saturday 26th March, St Vincents Hospital, Darlinghurst

21st March, 2011

T4321 - click here for information on running a Tea for 3-21 event, on or around World Down Syndrome Day, like this now famous annual gathering:

Morning Tea (T4321) 

All Hallows Catholic Church, Halley Street, Five Dock

Sunday 27th March, at 11:00 am-midday.

Playing to their strengths - at school: Canberra, 31 March

A workshop for teachers and school personnel
Identifying the learning and communication strengths of people with Down syndrome, to provide appropriate support in school environments: classrooms, playground and activities

Thursday 31st March 2011, 9.30 am - 3.00 pm

West Belconnen Leagues Club
Hardwick Cres, Holt ACT

Speaker:   Judy Davidson, Parent Support Manager, Down Syndrome NSW

For a detailed flyer and to register for this workshop please download and complete the registration form at this link and return by mail or fax to:

ACT DSA
PO Box 717, Mawson, ACT, 2607

Fax to 02 6290 0656, marked ‘Att: Karen Garrity’

Registrations close: Thursday 24th March 2011

Scrapheap wonder: wolf in sheep's clothing

Here's one for the Scrapheap Adventurers, spectators and supporters, from Trailbike Adventure Magazine:

The Scrapheap Adventure Ride raised big bucks last year, and entries for the 2011 ride are going like an English bowler through an Australian Test batting line up. Numbers are well up on 2010 and it looks as though a bunch of riders are in for a great ride again, this time heading for Cameron Corner, and the Down Syndrome Association of NSW is in for some more help.

So that’s all good.

But Perry’s determined to get this inflammable CB400/XR (or, as Perry calls it, the XR460 Four) out there. We met up with him for a good look at what older riders would call a “rat” bike.
.... read on here for more od the story and pictures.

Register for, or support the Scrapheap Adventure Ride 2011 here.

NDIS Campaign's response to draft report from Productivity Commission

The Commission has recommended the introduction of a National Disability Insurance Scheme and has outlined a number of recommendations about the way it could operate and be funded.

The report is long and detailed, examining many of the complex issues that must be addressed before the NDIS can be introduced and implemented. As a result it will take some time for us to go through all the detail. In the meantime the key points are:

• The Commission has accepted that the disability system is "inequitable, underfunded, fragmented and inefficient and gives people with a disability little choice ... a real system for people with disabilities is required." The Commission has therefore accepted the need for reform and for an NDIS. 
• The Commission has also accepted that the nation must better meet the needs of those people who currently do not receive any or only inadequate support and that their improved support packages would be portable across state and territory borders. 
• The Commission recommends the introduction of a fully funded National Disability Insurance Scheme with individualised funding to ensure people with a disability and their families are able to exercise greater choice and control about the supports they need.
• The Commission has also suggested an entirely separate scheme for people requiring lifetime care and support for castrophic injuries. To be known a the NIIS, a no-fault National Injury Insurance Scheme it would draw on the best schemes operating around Australia.

Further analysis and media commentary is on the NDIS website: http://www.everyaustraliancounts.com.au/

Productivity Commission's draft report on Disability Care and Support - links

Here is the link to the Productivity Commission's draft report on Disability Care and Support - it does take a while to download.

Key points are here.

Public hearings for the draft report - registration information is here.

ABC News report is here.

The Australian's news report is here.


The draft report has been released for comment before the final report is tabled in Parliament on 31st July 2011.

The Inquiry's home page is here and lists numerous contacts. Submissions are open until 30th April 2011.

1/3/2011:  A joint press release from Jenny Macklin, The Minsiter for Families, Housing, Community Services and Indigenous Affairs,   Bill Shorten MP, Assistant Treasurer, and Senator Jan McLucas, Parliamentary Secretary for Disabilities and Carers is available here.

More on the Productivity Commission draft report to be delivered today

ABC Radio National covered the draft report on Disability Care and Support to be delivered to Parliament today, in a ten minute segment during the Breakfast program this morning.  Audio available here.

And a second, very plain-speaking article by Sue O'Reilly from The Australian, this weekend is here.

Chance to show we're willing and able to help

Stephen Lunn, Social affairs writer,  The Australian February 26, 2011

For the millions of Australians living with a disability or caring for someone who is, Monday at 2pm will be a watershed moment.

But the rest of us should be no less interested when the Productivity Commission releases its draft report on Disability Care and Support. First, disability can affect any of us at any time. Second, the hit to taxpayers could be significant if the government pursues the commission's anticipated recommendations.

The report is expected to chart the course to a new national disability scheme, one designed to give people with disabilities appropriate levels of care and support across their lifetime. Part of the new approach may well be a no-fault national disability insurance scheme, the nirvana of the disability sector.

.... read on here for the remainder of this article from The Australian.

Home and Community Care Program: Fact Sheets about changes from 2011-2012 and Fact Sheets about HACC Service Types

The Home and Community Care (HACC) Program is a joint Australian, State and Territory Government initiative to help people in need. The NSW Department of Ageing, Disability and Home Care administers the HACC Program in NSW. The program helps frail older people and people with a disability who would otherwise be prematurely or inappropriately admitted to residential care to live independently in their own home.

Ageing, Disability and Home Care (ADHC) is committed to ongoing communication with the sector on matters arising from the April 2010 Council of Australian Governments (COAG) decision on national health reforms.

Under the National Health and Hospitals Network Agreement there will be a split of responsibilities for aged care and disability programs at age 65 (age 50 for Indigenous Australians), with the Commonwealth Government to assume full responsibility for aged care services under the Home and Community Care (HACC) Program from 1 July 2012.

 Fact Sheet 1: COAG Age Split outcome - impact on NSW HACC services

As an outcome of the National Health and Hospitals Network Agreement, COAG has established the Commonwealth Government as the level of government with full funding, policy, management and delivery responsibility for a national aged care system. These reforms include a transfer to the Commonwealth of current resourcing for aged care services from the Home and Community Care (HACC) Program.

What is the decision?

The Commonwealth will assume:
a. funding and program responsibility for basic community care services currently provided under HACC for people 65 years or over (50 years and over for Indigenous Australians); and

b. funding responsibility for specialist disability services provided under the National Disability Agreement for people aged 65 years and over (50 years and over for Indigenous Australians).

The States will assume responsibility for:

a. funding and regulating basic community care services currently delivered under HACC for people under the age of 65 (under 50 for Indigenous Australians); and

 b. funding packaged community and residential aged care services delivered on behalf of the Commonwealth for people under the age of 65 (under 50 for Indigenous Australians).

 ..... click here to download the full text of this Fact Sheet (No.1)

Fact Sheet 2: Transition and Planning for NSW Services
Ageing, Disability and Home Care (ADHC) is committed to ongoing communication with the sector on matters arising from the April 2010 Council of Australian Governments (COAG) decision on national health reforms.

Under the National Health and Hospitals Network Agreement there will be a split of responsibilities for aged care and disability programs at age 65 (age 50 for Indigenous Australians), with the Commonwealth Government to assume full responsibility for aged care services under the Home and Community Care (HACC) Program from 1 July 2012.

This Fact Sheet provides information on ... issues which have emerged from ADHC’s initial consultations about the implementation of the reforms.
 
..... click here to download the full text of this Fact Sheet (No.2)

 Throughout the transition period, ADHC will provide regular updates to stakeholders and maintain information on its website at:

www.dadhc.nsw.gov.au/dadhc/Doing+business+with+us/hacc.htm

For further enquires, please contact coagreforms@dadhc.nsw.gov.au

HACC Services
ADHC provides a number of Fact Sheets about HACC service types, with information abut who is eligible, and how to access services here - scroll down the page to 'HACC service type fact sheets':

• Allied health
• Case management
• Centre-based day care and respite
• Domestic assistance and personal care
• Formal linen service and goods and equipment
• Home maintenance
• Home modifications
• Meals and other food services
• Nursing
• Social support
• Transport

 Who is eligible for HACC services? 

• Frail older people
• People with a disability
• Their carers

People can access HACC services in a range of ways, such as:

1. Direct contact with HACC service providers, who will assess eligibility.

2. Through the local Area Health Service or Aged Care Assessment Team (ACAT), who will undertake an assessment and make a referral to the appropriate service provider.

3. Through GPs, other medical practitioners, hospitals, rehabilitation facilities or Commonwealth Carelink. Commonwealth Carelink Centres provide information for older people, people with disabilities and those who provide care and services, and can be contacted on 1800 052 222 or via http://www.commcarelink.health.gov.au/

Extracted from information provided via the ADHC website, at: www.dadhc.nsw.gov.au/dadhc/Doing+business+with+us/hacc.htm 

Today I learned something about Down syndrome

From a man apparently unafraid to admit he had something to learn, from just the right teacher  ....

I'm sitting at Starbucks (that's a worldwide chain of coffee shops), checking email, making phone calls, "sipping my triple tall non-fat latte," and thinking about the fact that people with Down Syndrome make me uncomfortable.

My fear is that if I make eye-contact with a Down Syndrome person they will talk to me, I won't understand them, and then I'll feel embarrassed. (Yes Virginia, this phobia is "all about me").

So this particular Starbucks employs a young woman who has Down Syndrome. (I was going say "is afflicted" or "is a victim" of Down Syndrome, but my lack of knowledge of this syndrome leaves me wondering if "afflicted" or "victim" are appropriate descriptions).

The young woman's job is to dust, sweep the floor, clean the display case, bus the tables, and water the plants. She goes about her business with extreme diligence and a broad smile.

So I was sitting there working on a quote for a customer, when my fear became a reality.  The relative quiet of the establishment was broken with the words, "So how are you doing today?"  I glanced up to see the beaming young woman looking right at me ....... read on from The World According to Roger

New and replacement accommodation recently completed

These links are to media releases from ADHC (NSW Dept of Human Sefvices - Ageing Disability and Home Care) and the NSW Minister for Disability Services about recently completed/opened supported accommodation projects in NSW:

New accommodation for people with a disability opens at Warnervale (9/2/2011)

Stockton Centre site to remain in public ownership  (7/2/2011)

New $42m village for people with a disability opens (2/2/2011)

$14 million Lachlan Centre replacement near completion (1/11/2010)

Dangerous ideas

If you appreciated some of the ideas put forward in the Sunday Telegraph's feature article about people with Down syndrome today, (see earlier post), you might enjoy these too.

Christine Regan writes a column, MY WORD ! (a reflection on people with disability in society) for interaction, a publication of the National Council on Intellectual Disability.

Her most recent column (interaction Vol 24, issue #2, 2010 pp 33 - 38), puts forward a number of .....

Dangerous ideas

Much has been written and said about Sydney’s 2010 Festival of Dangerous Ideas.

Thinkers and commentators ranging from Geoffrey Robertson to Phillip Glover have ruminated on ideas such as “Should the Pope be prosecuted?” to “Parking meters are good!”

I utterly love the concept of dangerous ideas. I found myself wishing I had some.

Then, lightbulb moment, I suddenly realised that I live everyday with dangerous ideas ….. involving intellectual disability. As a risk-taking thrill-seeker, I thought I might share a few…

• Dangerous Idea: People with intellectual disability are really just like everyone else.

We all have different talents, understandings, world views, abilities etc — so do people with intellectual disability. Some of us need more assistance to navigate and negotiate the world, not just people with intellectual disability.

Why is this dangerous? Because it means that people with intellectual disability are no longer “other” or perpetual children. It means their rights to live and participate in the local street, the local shops, jobs and the community are the same rights as mine.

....  this is just the start —  read on here (go to pp 33 - 38) for more of Christine's Dangerous ideas.

Living the Up Syndrome: Sunday Telegraph

Jane Hansen, Sunday Telegraph, 20th February 2011:

On February 11, 2009, Riley Cohen was born into an imperfect world. For all its flaws and faults, his parents are now eternally grateful for one in particular: the pre-natal screening program set up to detect the extra chromosome Riley carried was inaccurate and cleared him of any defects.
.... read on.

Also by Jane Hansen today: Ending fears of risky test

Big plans for the future

A very encouraging story about a young man with Down syndrome carving out his future in regional Australia:

By Alan Erskine, Mildura Weekly, 10th February, 2011


He might be a trifle inexperienced, but Stuart Chaplin mixes a mean lemon squash. Just the right amount of lemon, soda and ice.

Stuart, 20, is the latest addition to the staff at Mildura Working Man’s Club, a job he secured on his own initiative after successfully completing a two-year TAFE course in work education.

It could be said that he already had a foot in the door, having completed work experience at the Workers while still at school, and staff say they were impressed with his infectious attitude and enthusiasm.

Part-time work is another thing entirely, but Workers CEO John Harlock and club operations manager Jill Fleming said Stuart presented well at his interview, and won the job as a trainee on merit.

...... read more about Stuart and his big plans for the future here.

Tell the Minister and ADHC about our priorities for the implementation of Stronger Together 2

The Minister for Disability Services, Peter Primrose and senior ADHC staff are leading community information sessions around the state during February and March. This provides an opportunity to send a clear message complimenting the general direction of Stronger Together 2 and reinforcing our campaign priorities.

Find the consultation closest to you from the ADHC website (unfortunately some have already happened), and/or post a comment or feedback Online Q&A

Family Advocacy and InControl Australia have launched a campaign to promote the implementation of the Stronger Together2 commitments to Self Directed Support:

Campaign Priorities

Priority 1: Providing all existing and new users of government and non government disability services the opportunity to direct their own support.

We will be looking to ensure that:

• people who want control over their resources have the opportunity at the earliest time;
• individualised portable funding arrangements translate into choice, voice and control.

Priority 2: Providing decision making support that is independent of government and service providers.

We will be working to ensure that:

• the ‘decision making resources’ are independent of government and service providers, able to be accessed easily and give the person with disability control

Priority 3: Transition support for services

We will be working to ensure that:

•   the voices of people with disability and families are heard in the process of service transformation.

Priority 4: Administrative processes consistent with a self directed approach.

We will be working to ensure that:

• the Stronger Together goal of “choice, portability and flexibility in funding and supports” means that people have control over how the money is used;
• government and service provider processes do not intrude into people’s lives; and
• there is a minimum of bureaucracy and paperwork.

For information about Self Directed Supports: A NSW Campaign

www.family-advocacy.com/learn-more-about-this-campaign.html

to join the campaign www.family-advocacy.com/join-the-campaign.html 

Follow the campaign on facebook www.facebook.com/Self.Directed.Support

Levy may fund '$11bn disability plan' : Shadow Minister

Patricia Karvelas,  The Australian, February 17, 2011

The federal government remains committed to establishing a national support scheme for disabled people, as the Coalition backs away from a potential fight on the issue, despite reports it could cost as much as $11 billion a year and be funded by a politically risky levy.

Parliamentary Secretary for Disabilities Jan McLucas said although the government would not make any commitments about the model of support it would endorse, it looked forward to the Productivity Commission's findings.

Julia Gillard will face another politically difficult decision with the commission expected to recommend this month that the government investigate a levy to fund a universal disability insurance scheme.

One option to fill the $5bn funding gap through a levy would be to add 0.8 of a percentage point to taxpayers' existing 1.5 per cent Medicare levy.

Senator McLucas

"I think it's a valuable exercise that we think about how people with disabilities get appropriate services and that's why we've asked the Productivity Commission to conduct this inquiry," she said.

Despite the Coalition's push against all new levies and taxes, Coalition spokesman for disabilities Mitch Fifield said Labor had been slow to act on disability support.

"Successive state and federal governments have failed Australians with disability," Senator Fifield said.
 
www.theaustralian.com.au/national-affairs/levy-may-fund-11bn-disability-plan/story-fn59niix-1226007122694