Assoc Prof Roger Stancliffe receives AAIDD Research Award

Roger Stancliffe is Associate Professor, Disability Studies, at the University of Sydney’s faculty of Health Sciences. Assoc Prof Stancliffe, and his work, particularly on community living and active support is well known to families of people with Down syndrome in NSW.  We congratulate him on his recent award in recognition of that work:

On June 7th, at the American Association on Intellectual and Developmental Disabilities (AAIDD) 135th Annual Meeting in St Paul Minnesota,  Roger Stancliffe, was honoured as the recipient of the AAIDD Research Award. AAIDD President, Professor Michael Wehmeyer presented the award, with a citation that read:

Research Award.
Presented to Roger J. Stancliffe PhD FAAIDD.
In recognition of your Exceptional Accomplishments.

In the 40-year history of the AAIDD Research Award, Assoc Prof Stancliffe is the first person from the southern hemisphere to be so recognised. Past recipients of this prestigious award include Sir Michael Rutter (UK), Jack Tizard (UK), Donald Baer (USA), David Braddock (USA), Ann and Alan Clark (UK), Lionel Penrose (UK) and Robert Edgerton (USA).

Source:  Australasian Society for Intellectual Disability

Memory Keeper's Daughter on GEM TV today 12.00

Short notice, but it might be useful to someone ... the movie "The Memory Keeper's Daughter" will be screened on GEM today (!) at 12.00 midday.

When too much sport is never enough ...

Lots more photos from the Special Olympics World Games posted overnight - and many more medals won.  They'll need a shipping container to bring them all home! Congratulations to Chris Bunton and Tracie Sammut who have each picked up several medals in gymnastics.  Visit the SO Australia Flickr Photostream to catch up ... and especially have a look at this fun photo of the Bunton family as they cheered on the women's gymnastics team - great hairdo John!  Mel Eustace (softball team member) was snapped with her coach, who happens to be her Mum, Fran.

It's not all about the medals - there are fabulous photos of the athletes and their supporters showing all aspects of the Games. Just go and look at them all!

Special Olympics World Games: some familiar faces in Greece ...

Special Olympics Australia is providing excellent media coverage via Facebook, Flickr, its news media hub and websites.  Here are some photos we've spotted (and there will be others that we have missed - there is so much to see!):

Congratulations to Joshua Gray who has won a swag of medals in gymnastics, being congratulated by his grandfather!

Chris Bunton preparing to compete in gymnastics - good luck Chris!

The women's gymnastics team is ready to compete (Ashley Kuhle is at right in the back row, Tracie Sammut is second from right in the front row, Rhianna Sinclair is on the right, front row) - good luck girls!

Nick Lorenz dancing with volunteers on centre court - good luck Nick! And a slightly more sedate one of the tennis team (that you in the shades, Nick?).

We're pretty sure that is Alex Hayes, second from left, this photo from the Daily Telegraph's media hub for the Special Olympics World Games.  The golf competition is in full swing now.  Good luck Alex and all of your team mates.

Check out other NSW athletes with Down syndrome who are competing in gymnastics, softball and tennis by following the links to athletes pages here, daily competition schedules and results here.

Before the Games there was touristing to be done ... Andrew Mujunen and Mel Eustace (front row) toured the old Medieval Town on Rhodes with their softball team mates, and cooled off with a swim.

Special Olympics Australia Flickr Photostream (page 1 is the latest photos).

Website of the week: Shifting Perspectives (website and app)

Website of the week is a new series of posts highlighting one website each week, that we use and/or recommend to those interested in various aspects of the lives of people with Down syndrome.  If you have a website you would like to recommend, please contact us at info@dsansw.org.au and we'll take a look. 

Shifting Perspectives is a body of photographic work from a group of professional UK photographers (most of whom are parents of people with Down syndrome), produced over six years (so far), aimed at shifting the world's perspectives on people with Down syndrome.  The photographs of people with Down syndrome of all ages have appeared in calendars, a collection of posters, and annual exhibitions in London and throughout the UK.  All of the works are now collected online, with information about the photographers and a video overview of the processes and aims.

The latest Shifting Prespectives initiative is a free app for iPhone, iPod Touch and/or iPad, produced by Kelvin Jones of Bright Machine) making it all available wherever you want to see it. You can download the app via iTunes - it takes a little while because it is substantial, and is well worth taking the time.

Key Word Sign: Basic Workshop (formerly Makaton)

A few places are still available at this workshop:

Saturday 9th July, 2011
9am – 3:30pm

Lifestart Nepean, 8-10 Carinya Ave,  St. Marys

Key Word Sign Presenter: Meagan Rudd

Fee: $100 for professionals;  $50 for parents

This full day Basic workshop covers the use of Key Word Sign and natural gesture to assist individuals who have difficulties with receptive and/or expressive communication.

Come along and learn how to use Key Word Sign, natural gesture and other strategies to communicate with your clients or child.

This workshop will enables participants to:

• explain the difference between Key Word Sign, Auslan and Signed English
• competently produce at least 80 signs
• select vocabulary for individual clients
• have an understanding of sign production techniques
• know where to find resources and follow up support in the use of key word sign and natural gesture
• be eligible to receive a Basic Key Word Sign Workshop certificate from Key Word Sign NSW

Morning tea and handouts will be provided, please bring your own lunch or it can be purchased at the nearby shopping centre.

For further information and to register, contact Meagan Rudd:  P 0410 691 381 E meagan.signon@gmail.com

RSVP: 6th July, 2011

Special Olympics World Games - opening ceremony photos

Special Olympics Australia has posted fabulous photos from the opening ceremony on Saturday evening on its SO World Games Facebook page. This album covers the entertainment, and some shots of Australian athletes, inlcuding Rhianna Sinclair and Joshua Gray at no, 23.

The sporting competition is underway, and medals are being won ... full news coverage is being provided by News Ltd, here. 

Graphic facilitation workshop: Centre for Disability Studies

Person Centred Graphic Facilitation
This ‘hands on’ workshop is important for all people involved with facilitation as part of their practice - consultants, team and project leaders, managers, facilitators, trainers and educators.

During this 2-day workshop you will:

•  Enhance your graphic recording skills for PATH, ELP etc
•  Examine the use of colour, size and form to build meaningful graphics
•  Learn how to present information in a visual way
•  Reflect on your practice to see how graphics and visual thinking can support your work
•  Realise graphing is about deep listening, not being a great artist!
•  Have fun exploring your graphing ability

Presenters:
Deborah Espiner is Principal Lecturer at the Faculty of Education, University of Auckland. She has a strong background in supporting students with disabilities within the education system and people with disabilities within community settings. Debbie’s considerable experience includes designing and teaching programs for students with disabilities, teachers, human service agency and community support workers, as well as facilitating government research and development contracts. She has used graphic facilitation in a variety of contexts including corporate, local council, educational and community settings.

Ray Murray was previously the Director of the Centre for Special Education at Auckland College of Education (now the Faculty of Education, University of Auckland). For the last five years he has worked as Disability Consultant and Facilitator in Ireland, assisting disability services to become more person centred. He was contracted by several service agencies to train staff as well as facilitate PATHs for people who wished to have a futures plan developed. While in Ireland, Ray was also a Research Associate at the National Institute for Intellectual Disability at Trinity College, Dublin, where he developed and taught a course entitled ‘An Introduction to Person Centred Group Facilitation’. In 2009 Ray delivered this course for CDS.

Thursday 7 July and Friday 8 July
9am-4pm

Ryde Eastwood Leagues Club, 117 Ryedale Rd, West Ryde

Cost: $300+GST for Non member of CDS; $275+GST for member of CDS

Registration includes morning and afternoon tea as well as lunch.

For bookings call (02) 8878 0500 or email mcarrick@med.usyd.edu.au

Let the Games begin ...

The Special Olympics World Games 2011 begin in Athens on the evening of the 25th June, local time.  All the very best to the athletes participating from around the world, especially those we know. And our best wishes to the volunteers, coaches, officials and families.

Keep up with Games news and results here on the Special Olympics Australia website (check out the picture of all 130 members of the Australian team at the top of the page).

Arts events coming up

An interesting mix of arts events is on the calendar over the next few weeks across Sydney and regional NSW.  Here are some highlights - further details from Accessible Arts events page:

Romeo and Juliet in Tokyo - A Japanese Love Story
The All Abilities Theatre Company present their latest production, proudly supported by Wagga Wagga Council, the School of the Arts Community Theatre and Kurrajong Waratah.
The Twilight Dance Troupe as guest performers will also present “The Rabbit in the Moon”.
12 noon Thursday 30 June 11 and 7:00 pm Friday 1 July 2011
Wagga Wagga

Studio ARTES Artists Exhibition
Works by selected Studio artists in the Fountain Court of NSW Parliament House, Macquarie Street, Sydney
5 - 26 July 2011

Boonah Winter Art Exhibition
Works range from acrylic and watercolour paintings, printmaking and mixed media. Most of the artworks are for sale. All sales go towards the Boonah art programme and the artists.
Until 5 July 2011
Gallery Red, Shop 11, 131-145 Glebe Point Rd, Glebe

And an offer from Shopfront Theatre at Carlton:

FREE WORKSHOP!

With Margot Politis, Director of Shopfront’s Integrated Bodylines Ensemble, and dancers from the ensemble.

The Shopfront Contemporary Arts and Performance Outreach Program is offering your school or community group a free one-hour dance & drama workshop, for young people with and without disabilities. Learn how to express yourself and make beautiful performance work – the inspiration for which is YOU!

If you would like to book a workshop please contact:

Margot Politis: p: 0403 532 838 e: maevis91@hotmail.com
or leave a message at Shopfront: p: 9588 3948 e: admin@shopfront.org.au

www.shopfront.org.au

Library Thursday: 12 years of family research from Western Australia, and social politics

(Google's Blogger program is taking an unexpected rest from posting photos at the moment - book cover images might appear later ...)

Understanding Down Syndrome - capturing family experiences through research is compiled from a number of research initiatives undertaken with Western Australian families over the last 12 years.  

Also from Western Australia this year:
Greater Expectations, by Jan Goddard represents a distillation of interviews with families over a ten year period. Available for members to borrow from our library.

Together these publications provide a very substantial body of work coming out of a single State.

The Politics of Down Syndrome, by Keiron Smith is another much anticipated title that will compliment Greater Expectations.  It will be released in the UK in September, and is available now on pre-order from The Book Depositry which offers free shipping world-wide.  A copy will be in the Down Syndrome NSW library as soon as we can get it.  In the meantime, it is worth checking out the book's Facebook page to trace its genesis, and to catch early reviews - the first of which has just been posted.  All royalties from the book will be donated to Down Syndrome Education International.

A well established title in a similar genre is Michael Berube's Life as We Know It, published in 1996 can also be borrowed by members from our library.

6:30 with George Negus: on the National Disbaility Insurance Scheme tonight

From People With Disability (Australia):

Watch 6:30 with George Negus tonight (Wednesday 22nd June) to see a special on the National Disability Insurance Scheme featuring a PWD Executive Director Michael Bleasdale and employee Mel Harrison. Should be a great feature investigating why an NDIS is so important!

Screening at 6:30 and 10:30 on Channel Ten TONIGHT!

NSW Government 2 day summit on person centred planning: registration open

via Ageing, Disability and Home Care:, an invitation from the Minister, Andrew Constance MP:

The NSW Government is committed to implementing key reforms to the disability sector – individualised funding packages which will put people with a disability and their carers at the centre of decision making.

In order to do this, the Government is actively seeking the advice of people with a disability about their needs and aspirations for personalised service delivery, including how the system supports them.

The important consultation process will start with a two-day summit on 7 and 8 July 2011. This will be followed by a significant program of more than 100 local consultation sessions which will be held throughout NSW over the second half of 2011.

The Government will also work with peak bodies such as the Disability Council, NCOSS (NSW Council of Social Services), National Disability Service NSW and consumer organisations to seek their input.

NSW Government Person Centred Approaches Consultation Summit

OBJECTIVE: To launch the NSW Government person centred consultation process and undertake the first stage of feedback on some of the key issues

Thursday 7 and Friday 8 July 2011

Acer Arena, Sydney Olympic Park, Homebush
Fully accessible venue

SHOULD I ATTEND THIS EVENT? Yes if …

 you have a disability
 someone in your family has a disability
 you care for someone with a disability
 you are part of the disability service sector

Free – no cost to attend summit

Register online and get further about the program, venue, accommodation options, transport and other information here.

This summit is just the start…

The NSW Government is holding this two day summit to start the important process of consultation. If you can’t attend, this is not your only chance to have a say about how we can build a disability services system that puts the person at the centre.

You will be able to attend one of more than 100 consultations to be held in the coming months around NSW. You will also have the opportunity to submit your ideas online soon.

Respecs: Australian distributors for Erin's World glasses frames

A new Australian company is now importing glasses frames specifically made for children with Down syndrome.

Queensland couple Gavin and Rachel Leslie have started Respecs, a company set up to import the ‘Erin’s World’ range frames from the United States.

When looking for spectacles for their daughter Imogen, the Leslies became frustrated with ill-fitting frames that were too big, sat too low and always needed an elastic band to keep them up.

That is when they discovered the Erin’s World range – designed to fit faces with narrower temples and with lower cross pieces to help them sit properly on children’s faces.

The result is that the glasses don’t slip down the bridge of the nose as easily, sit up higher so the child isn’t always peering over the top of the spectacles and look better because they are not too wide for the face.

The Leslies decided to become the Australian distributors of the frames to allow other parents in the same situation as themselves better access to a great and helpful product.

There is a range of shapes and colours available and can be seen by visiting www.specs4us.com

Parents and optometrists who are interested can contact Respecs for more information and a brochure by phoning 0417 441 844 or via their Facebook page:

A: Specs4Us would redirect the order to us. The best option is show the catalogue to your optometrist to find out what size is suitable. Once they narrow it down you can pick model and colour. Then either have them contact us to order or you can order from us directly. Let us know how you go!

www.facebook.com/pages/Respecs/189295557788872

A recent pertinent query, answered via the Respecs Facebook page:

Q: I live in Country NSW ,how would ordring through you work? Would it be easier than ordering through the specs4us website?

Down Syndrome Education international: Working memory training trial begins final round of assessments

Working memory is highly significant for people with Down syndrome of all ages. If you have attended almost any of our seminars or workshops, you will know that we usually address the impact of working impairment on whatever topic is up for discussion.

The term 'working memory' refers to our ability to hold information in mind and manipulate it for brief periods of time. Because of the strong associations between working memory, learning and language development, it has been suggested that if children with Down syndrome had better memory skills, they would have the capacity to benefit significantly more from any language, reading and speech interventions implemented at school or home.  Down Syndrome International

Down Syndrome Education International's current research into a potential method to improve working memory skills for children with Down syndrome is drawing to a close, and an online information session is being offered in July:

To find out more about the trial and our preliminary findings, join us at one of two free online events in July:

• 12 July 2011, 6.00pm UK/BST (10.00am Los Angeles, 1.00pm New York, 7.00pm Paris).  Register here.

• 13 July 2011, 9.30am UK/BST (10.30am Paris, 2.00pm New Delhi, 4.30pm Singapore, 6.30pm Sydney, 8.30pm Auckland).  Register here.

Mothers' Weekend 2011: Bundanoon

We hear the 2011 Mothers Weekend at Solar Springs went well ...

... the party of eight from Down Syndrome NSW (Hunter), included a birthday girl ...

... and there was apparently a small problem with a tyre on a rental car on the way home, but nothing a hot pink tool kit, a mobile phone call to a handy husband at home and a skillful woman couldn't handle!

The most common comment has been 'thanks to Judy and Lynn for organising another great weekend'.

Women's Weekly article about 'Water under Water'

Here is the online edition of the Women's Weekly (June issue) article about Peter Rix's novel Water under Water (referred to in this post earlier this week),  and another fabulous picture of Jo Rix with her Mum and Dad.

Special Education iPad Users: new Facebook page

Interest continues to build in the use of devices such as iPad, iPod Touch and iPhone, and their applications by people with disabilities. Communication applications are particularly prolific. It is becoming increasingly useful to select a number of 'clearing house' sites to keep track of what available. 

Here is a new Facebook page providing information on special education uses of the iPad - both software and hardware accessories: Special Education iPad Users.

We listed some others in the March 2011 issue of  Voice (our quarterly journal):

iPhone/iPod Apps for AAC - regularly updated annotated online listing of apps for augmentative and alternative communication, compiled by Jane Farrall at specialist Australian software supplier Spectronics, as a community service:

iPhone, iPad and iPod apps for special education - a comprehensive, categorised list of apps published in April 2010 by Eric Sailers, a speech and language pathologist working in special education in California. The list provides links and descriptions.

There's an app for that  - feature article from Voice, March 2011

And Down Syndrome Association of Queensland has published online the DSAQ guide to apps

Brain scan identifies patterns of plaques and tangles in adults with Down syndrome

News was released this week by the UCLA Health System about research using a neuroimaging technique that it is hoped will identify dementia in people with Down syndrome earlier and more accurately:

In one of the first studies of its kind, UCLA researchers used a unique brain scan to assess the levels of amyloid plaques and neurofibrillary tangles — the hallmarks of Alzheimer's disease — in adults with Down syndrome.

Published in the June edition of the Archives of Neurology, the finding may offer an additional clinical tool to help diagnose dementia in adults with Down syndrome, a genetic disorder caused by the presence of a complete or partial extra copy of chromosome 21.

Adults with this disorder develop Alzheimer's-like plaque and tangle deposits early, often before the age of 40. Previously, the only way to physically detect these abnormal proteins in this population was through an autopsy.

Over the last decade, methods for identifying and imaging the neuropathology of Alzheimer's disease in living patients have been developed. UCLA researchers have created a chemical marker called FDDNP that binds to both plaque and tangle deposits, which can then be viewed through a positron emission tomography (PET) brain scan, providing a "window into the brain." Using this method, researchers are able to pinpoint where in the brain these abnormal protein deposits are accumulating.

Due to individual variability and difficulty in obtaining baseline levels of cognitive function in adults with Down syndrome, such imaging may be useful in helping to diagnose dementia, say researchers.

"Neuroimaging may be a helpful tool in assessing and tracking plaque and tangle development over time in this population," said the study's senior author, Dr. Gary Small, a professor at the Semel Institute for Neuroscience and Human Behavior at UCLA who holds UCLA's Parlow-Solomon Chair on Aging. "Early detection can also lead to earlier interventions and treatments, often before symptoms begin."

For this study, researchers administered the FDDNP chemical marker intravenously and then performed PET brain scans on 19 non-demented adults with Down syndrome (average age 37), 10 healthy controls (average age 43) and 10 patients with Alzheimer's disease (average age 66).

Analysis found significantly higher binding levels of the chemical marker in participants with Down syndrome in all brain regions, when compared with healthy controls. Compared with Alzheimer's disease patients, subjects with Down syndrome showed significantly higher binding levels in the parietal and frontal regions — areas involved in memory, behavior and reasoning.

"The higher level of plaques and tangles may be reflecting the early and extensive accumulation of these deposits seen in individuals with Down syndrome," Small said.

The researchers also discovered significant associations between increased age in those with Down syndrome and higher FDDNP binding values in the parietal, lateral temporal and frontal regions.

"This is one of the first times we've been able to visualize the neuropathology occurring in the living brains of adults with Down syndrome," said study author Dr. Jorge R. Barrio, a professor of molecular and medical pharmacology at the David Geffen School of Medicine at UCLA who holds UCLA's Plott Chair in Gerontology. "The age-related patterns and regional distribution of the plaques and tangles were consistent with the types of deposits that could only be identified previously through an autopsy."

While the FDDNP brain scans didn't differentiate between the two types of abnormal proteins, the areas of accumulation were consistent with earlier autopsy study findings, which had shown that while plaque and tangle pathologies are the same in both Down syndrome and Alzheimer's disease, the deposit patterns are different.

Autopsy studies have also shown that all adults with Down syndrome eventually develop these accumulations of amyloid plaques and tau tangles. But rather than experiencing memory decline and other cognitive losses, as is common with Alzheimer's, aging Down syndrome patients tend to develop behavioral problems.

As part of the study, researchers performed cognitive and behavioral assessments of the Down syndrome subjects to see if FDDNP binding levels correlated with assessment results. They found several positive correlations with behavior abnormalities associated with these brain changes, including indifference and inappropriateness.

"We found that the behavioral changes in the subjects with Down syndrome correlated with neurological changes in related areas of the brain consistent with the level of FDDNP binding levels to the abnormal proteins," Small said.

Small noted that cognitive skills in people with Down syndrome vary considerably and may not have been captured completely in the assessment, which primarily measured memory function. Larger future studies will compare other cognitive tests with FDDNP binding values, he said.

In addition, researchers plan to determine the relative benefits of different forms of PET imaging using various chemical markers, including FDDNP.

Journal citation:
Positron Emission Tomography of Brain β-Amyloid and Tau Levels in Adults With Down Syndrome

Linda D. Nelson, PhD; Prabha Siddarth, PhD; Vladimir Kepe, PhD; Kevin E. Scheibel, BS; S. C. Huang, PhD; Jorge R. Barrio, PhD; Gary W. Small, MD
Arch Neurol. 2011;68(6):768-774

Abstract

Disability Solutions magazine - online access

Disability Solutions magazine was published for 10 years from 1996 - 2006, six issues each year, with Joan Medlen as its editor and publisher. Each issue focussed on a particular theme, was well researched and written - it remains a very valuable resource for families and professionals. All issues are still available online, now hosted at Joan Medlen's Phronesis Publishing website.

Just  few of the topics covered include:

Using visual supports for communication (Vol 5, issues 4 and 5)

Down syndrome and autism (Vol 3, issues 5 and 6)

Wandering in children with Down syndrome (Vol 4, issue 3)

Provisions for reprinting articles from Disability Solutions are given.  As Joan says, "... many of the topics are timeless and some are one-of-a-kind!"

Reviews of 'Water under Water'

Water under Water, the new novel by Peter Rix, was launched in Sydney last weekend, and has attracted quite a bit of publicity, including an excellent article (with some great photos of Peter Rix's family) in the the June issue of the Australian Women's Weekly. Reviews are begining to appear in the mainstream media. Louise Swinn in The Australian liked both the story and the writing.

It is available in mainstream bookshops, and for members to borrow from our library. You could also suggest that your local community library add it to their collection - perhaps for Book Week (22-26 August) or for Down Syndrome Awareness Week (16-22 October) - if not immediately.

A different view of an NDIS

An op ed piece by Vern Hughes in today's Fairfax press puts an opposing view to the strong support elsewhere for a National Disability Insurance Scheme that includes disability service providers and raises strong comments:

When it comes to disability reform, cut out the middle men

Healthy lives forum: Albury, 19th July

NSW CID will be holding a forum on strategies for improving the health of people with intellectual disability in Albury and the surrounding regions

Tuesday 19 July
Commercial Club, Albury, NSW

The day is for family members and carers, people with intellectual disability and service providers.

There will be sessions on:

• Challenges to health care
• Tips for visiting the doctor
• Issues for regional areas
• Making health care work for you

There will be easy to understand sessions for people with intellectual disabilities.

Details about the speakers and the registration form are available here.

Short courses for people with disabilities at Sydney Community College

Sydney Community College is excited to announce next term's short courses for people with disabilities, starting in July.

Courses are offered through the Inclusive Community Education Program (ICEP), a pilot program funded by the Department of Family and Community Services, Aging Disability and Home Care. ICEP is a flexible respite program that aims to give carers a break whilst providing unique recreation and social opportunities for adults with a disability.

To be eligible for a place, each student must:

- Have a disability
- Live at home with an unpaid carer (e.g. parent/guardian)
- Be aged 18-45

- Live in the local community, including LGAs of Ashfield, Botany Bay, Burwood, Canada Bay, Canterbury, City of Sydney, Leichhardt, Marrkickville, Randwick, Rockdale, Strathfield, Waverly or Woollahra.

Enrolments for next term's courses are now open. All courses are free. Experienced tutors run the classes and two support facilitators are on hand at all times.

Contact: Duncan Rose
Social Inclusion Coordinator
Sydney Community College
2a Perry St Lilyfield NSW 2040

Or email, phone or fax to book in your courses:
duncan.rose@scc.nsw.edu.au
Ph: 8752 7571 Fax: 8752 7500

Booking form

Source: NCOSS AGEING & DISABILITY UPDATE, 10 June 2011

Mental health needs of people with intellectual disability are largely unmet: professional bodies

The Royal Australian and New Zealand College of Psychiatrists is calling for better recognition, services and funding for people who have both an intellectual disability and mental illness.

“People with both intellectual disabilities and a mental illness often fall through the services gaps between the health and disability systems and their considerable needs are not addressed,” said Dr Maria Tomasic, President of The Royal Australian and New Zealand College of Psychiatrists.

“The Royal Australian and New Zealand College of Psychiatrists welcomes the government’s recent commitment to developing a ten year roadmap for mental health reform. It is essential that the roadmap for reform addresses intellectual disability mental health. Having a voice for intellectual disability mental health on the new Mental Health Commission is also vital to ensure an inclusive approach to service planning and delivery for people with intellectual disability mental health issues,” said Dr Tomasic.

... read on here for the full statement from the Royal Australia and New Zealand College of Psychiatrists, issued at its Congress, in Darwin, on 1 June

The National and NSW Councils for Intellectual Disability, and the Australian Association of Developmental Disability Medicine released their statement, The Place of People with Intellectual Disability in Mental Health Reform at the RANZCP Congress. The basic proprosition of the statement is that:

People who have both an intellectual disability and a mental illness need to be included from the start in mental health reform. They currently have very poor access to appropriate mental health services.



Government needs to address this problem, in particular by funding specialised intellectual disability mental health psychiatrists and nurses who can act as a consultancy, training and research adjunct to mainstream mental health services.
 
... read it in full here.

Feature articles from Voice, June 2011 online

The feature articles from the June 2011 issue of our quarterly journal Voice are now available online. The theme for this issue is Family matters. Feature articles:

Lessons learned - what families need
Just us - connecting with other families
Resources on family matters
Big plans for the future (reprinted, with permission from the Mildura Weekly)
Coeliac disease and Down syndrome - a tricky combination
Reading the evidence

The print edition is available by subscription - contact admin@dsansw.org.au for further information.

What's On YOUR Plate?

One for the night owls ...

Practical Tools Webinar Series: What's On YOUR Plate?
Strategies for Healthy Eating for Teens and Adults with Down Syndrome and Related Disabilities.

And just WHOSE PLATE are we talking about?

Healthy lives - healthy eating - health weight - all take work. The work is not limited to the person learning! It involves everyone: Mom, Dad, siblings, direct support providers, teachers, friends, and more.
In this webinar, we'll discuss some ways to build healthy living into every day life. And we'll have some fun, too!

Presented by Joan Medlen, JEM Communications and Phronesis Publishing (author of The Down Syndrome Nutrition Handbook)

Saturday, July 30, 2011
8.00 am Pacific Time (USA)
which will be:
Sunday July 31 2011
1.00 am Eastern Australian time

Click here to register

Webinar 'seats' are limited.

My Perspective: UK photography competition winner announced

David Cormack has been announced as the winner of this year's My Perspective photographic competition in the UK. Two runners-up and 10 highly commended entries were also announced.

From the DSA (UK) website:

"My Perspective is the only photography competition for people with Down's syndrome. The competition started last year as the natural follow-on from the hugely successful Shifting Perspectives exhibition. For the past seven years, the Down’s Syndrome Association (DSA) has been showcasing work from a fantastic collection of professional photographers who all have a personal link with Down's syndrome. In years gone by, people with Down's syndrome were photographed as exhibits, where the viewer was not supposed to see the person, just the difference. My Perspective turns the camera around and gives the subjects in front of the camera a chance to show the world from their point of view."

If you are planning to visit the UK over the next few weeks, you will have an opportunity to see the exhibition.

Boonah Creative Arts Winter exhibition

Boonah is an initiative of Centacare Broken Bay which aims to provide and promote arts, education and creative expression for all people—especially people with a disability

17th June - 5th July

Gallery Red
Shop 11,131-145 Glebe Point Rd


Download an invitation adn further information from the exhibition website.Glebe

UK reading trial update, publication plans and online event

Down Syndrome Education International has released a news update about its current reading research with children with Down syndrome, and is offering an online update in July.  Read about the preliminary findings and publication plans here.

Find out more at free online events

To find out more about the trial and our preliminary findings, join us at one of two free online events in July:

• 19 July 2011, 6.00pm UK/BST (10.00am Los Angeles, 1.00pm New York, 7.00pm Paris).  Click here to register.

• 20 July 2011, 9.30am UK/BST (10.30am Paris, 2.00pm New Delhi, 4.30pm Singapore, 6.30pm Sydney, 8.30pm Auckland). Click here to register.

Dr Kelly Burgoyne's review of reading research, Reading the evidence, is published in our quarterly journal, Voice, June 2011, and is available online here.

'Glee' series final

Are you a Gleek?  Did you see the season final of Glee this week on Channel 10?  What did you think of the story about Sue Sylvester and her sister?

Don't read on if you are still waiting to see it ...

Dr Jane Shulz  (Billy's mother) blogged about her response after it was screened in the USA few weeks ago.

Information from the Big Event 2011

In Control Australia has reported on the Big Event, held in Sydney in May 2011, in its June 2011 e-newsletter
Presentations from the Big Event are now available online from In Control (you might need to register - free - to access the files).

In Control has recently established a Facebook page.  You do not need to be a Facebook account holder to access it.

Library Thursday: 'Being a healthy woman' translations

Being a Healthy Woman, published in 2010 by NSW Health for women with intellectual disabilities (see our review from last year) is now available in translations into five community languages: Arabic, Chinese, Dinka, Korean, Vietnamese in addition to English.

All editions can be freely downloaded from the NSW Health website.

Source: NSW CID e-Bulletin, June 2011

What do people with intellectual disability think and know about the campaign for a National Disability Insurance Scheme?

NSW Council on Intellectual Disability has produced an excellent Easy Read edition of its response to the Productivity Commission's draft report on its Inquiry into Disability Care and Support.  The response was prepared by the  Speak Out Reach Out Committee 

It is very comprehensive, so long, but well worth downloading to help explain what a National Disability Insurance Scheme will mean to people with intellectual disabilities, the current inquiry and campaign process, and how people with intellectual disabilities have been supported to have their say.

A print copy is available in our library, but we recommend that you download your own copy to keep.

Down Syndrome Program (Boston Children's Hospital) 2011 speaker series for families online

The excellent Down Syndrome Program of speakers for parents is now in its second year at Boston Children's Hospital, in honour of paediatrician, Dr Alan Crocker.

Each event is webcast live, with the talk then being made freely available online to access at any time, bringing a world class expert to your computer. A few days afterwards notes and handouts are posted, a;long with the online video.

Note the next event (listed below is on 27th June, on Autism and Down syndrome.

Already available online from the 2011 series:

February 28, 2011 - William Kiernan, Ph.D., M.S., M.B.A presented Postsecondary Education, Employment and National Service

April 5, 2011 - Kim Barbas, BSN, RN, IBCLC presented Breastfeeding and Down Syndrome

May 23, 2011 - Linda Nelson, DMD, MScD and Marc Ackerman, DMD, MPH presented on Dental Issues in DS and Orthodontics in DS

Schedule for the remainder of 2011 (all times listed for live viewing are eastern USA time):

June 27th, Monday, 7:00pm - David Stein, PsyD will present on Autism and Down Syndrome

July 5th, Tuesday from 10am - 11:30am: Emily Davidson, MD, MPH will present on Complex Care Needs and Down Syndrome

September 6th, Tuesday from 11am - 12:30pm: Cynthia Haddad, CFP and John Nadworny, CFP, ChFC will present on Financial Planning for Families

October 24th, Monday from 6:30pm - 8:30pm: Margaret Kenna, MD, MPH, FACS, FAAP and Lisa Walker, AuD, CCC-A will present on Hearing/Audiologic Concerns and Down Syndrome

November 1st, Tuesday from 10am - 11:30am: JoAnn Simons, MSW, will present on Transitions for Young Adults with Down Syndrome

December 12th, Monday from 6:30 - 8:30pm: Priscilla Osborne, PT, MS, PCS and Jessica Konter, PT, MSPT, DPT will present Gross Motor Skills and Down Syndrome

Catch up with the 2010 Speaker Series here.

Special Olympics: Hills district (Sydney)

Special Olympics - Sydney Hills Region is offering some new activities available to ALL interested athletes:

Fitness, Fun and Athletics

The Kings School, Pennant Hills Road, North Parramatta
4-5 pmThursdays

Basketball

Castle Hill High School
6.00pm – 7.30pm Wednesdays
Soccer
Bella Vista Oval, Norwest
3.00pm Sundays

Contact Sports Co-ordinator, Kerry Nethery on 0403 786 818 or kerry.nethery@gmail.com

Down Syndrome NSW publications online

You can now download these Down Syndrome NSW publications as .pdf files:

Down Syndrome NSW News and Update, Winter 2011
Speak UP! Issue 41, Winter 2011

DS NSW members receive print editions as part of their membership benefits.

City 2 Surf for Down Syndrome NSW

City 2 Surf has become the event on the Sydney calendar ... fast or slow, young or old, if you haven’t ‘city to surfed’ before, why not make 2011 the year!

Another great reason to take part, whether you’re a first timer or a seasoned pro, is that it’s a great fun and easy way to support people with Down syndrome and their families by selecting Down Syndrome NSW as your charity. Just go to www.city2surf.com.au  and choose Down Syndrome NSW from the drop down list of charities. You can set up a ‘hero page’ or have one set up for you and email friends, family and workmates so they can cheer you on.

If you have difficulties or questions, just call Priscilla on 02 9841 4404 or email priscilla@dsansw.org.au

Congratulations to those earlybirds who have already registered for this year’s City 2 Surf, have started their training and set up their ‘hero’ pages to raise valuable funds for Down Syndrome NSW...

Richard Struthers: http://everydayhero.com.au/richard_struthers_4

Michaela Howells: http://everydayhero.com.au/michaela_howells

Michael Hearne: http://everydayhero.com.au/Michael_Hearne

Jane Grew: http://everydayhero.com.au/Jane_Grew_0493

Donna Hogan: http://everydayhero.com.au/Donna_Hogan

Johan Kusuma: http://everydayhero.com.au/Johan_Kusuma

Jan Drosselmeyer: http://everydayhero.com.au/Jan_Drosselmeyer_1148

Brendan Nolan: http://everydayhero.com.au/Brendan_Nolan_7288

... and all of those still to sign up.

All the best for your training!

Speaking of School Leaver Expos ...

.... as we were in this post, here are some dates over the next few weeks and months:

Wyong RSL
20 June (Mon) 6pm -7.30pm
Expo showcasing ADHC Program Providers only
For more information contact
Tracey Scheitel, DET Support Teacher (Transition) 4358 2091 tracey.scheitel@det.nsw.edu.au

Gosford
22 June (Wed)
Glenvale School at Narara
Expo showcasing ADHC Program Providers only
For more information contact
Cherie Risti, DET Support Teacher (Transition) 4325 0792 cheri.risti@det.nsw.edu.au

Sydney Region
Wedenesday 3rd August 2011
Visit any time between 3 pm and 6 pm
Marrickville High School Hall
(Enter via Northcote St, marrickville - parking available in staff carpark or on Northote St)
Wheelchair accessible
Entry: free
Service providers from the eastern suburbs, city, inner west and surrounding areas will be attending.
Further information:
DET Sydney Region Support Teachers (Transition): Jennifer Dash 9555 4152 or Sue Tomasetti 9300 9579; Catholic Education, transition Officer: Fran McBride 0408 258 469

North Sydney School Leavers Expo
For school students with a disability, parents/carers and school staff
1 to 5:30 pm Wednesday 24th August
Dougherty Centre Auditorium & Extension, Chatswood

Art exhibition reminder: Darlington

Don't forget that Fraser Pollock's drawings are at the Sheffer Gallery, 38 Lander Street, Darlington, as part of the Show Down exhibition. 

Official opening (and drinks with the artists) is on Saturday 4th June at 2.30 pm.

NSW proposes that NDIS be trialled in the Hunter region

The NSW Government has embarked on a campaign to have the proposed National Disability Insurance Scheme introduced and has suggested that a trial of the scheme could be run in the Hunter region ...

Read about this proprosal here, on the Ageing, Disability and Home Care website.

Individualised funding for people with disabilities: NSW summit in July 2011, community consultations to follow

Statement issued by the NSW Liberal Party this morning:

A two day summit will be held next month, as the O'Farrell Government looks to implement one of its key reforms to the disabilities sector.

Minister for Ageing and Disability Services, Andrew Constance, said individualised funding packages would put carers and people with a disability at the centre of decision-making.

"Under the O'Farrell Government's proposal, people with a disability won't be dictated to by bureaucrats when it comes to the services they receive," Mr Constance said.

"This will put carers and people with a disability in control of their funding arrangements."

A two day summit will be held on the 7th and 8th of July to start the important process of consultation.

"The summit will be the catalyst for a significant program of over 100 consultation sessions which will be held throughout NSW over the second half of this year," Mr Constance said.

"It'll give us the information we need to make sure we are delivering what people want," Mr Constance said.

"The NSW Government is actively seeking the advice of people with a disability about their needs and aspirations for personalised service delivery."

The Government will work with peak bodies such as the Disability Council, NSW Council of Social Services (NCOSS), National Disability Service NSW and consumer organisations.

"Individualised funding packages will give people with a disability more choice and control over their lives and futures, including how the system supports them," Mr Constance said.

After this phase of the consultation, the feedback would be analysed to produce a draft person centred model for NSW.

"The O'Farrell Government is committed to building the strongest client-focussed service arrangements in the country."

The NSW Government has committed $2 billion in new growth funding to implement the second phase of Stronger Together, which will see the roll-out of more than 47,000 new disability services and places between 2011 and 2016.

State Government makes Ryde families' dream come true

After almost seven years of lobbying, attending several hundred meetings that became a rollercoaster of hope and despair, the parents of a group of 20 adults with intellectual disabilities who live in the Ryde area have been granted their one wish – to have suitable supported accommodation provided for their adult children.

RASAID (Ryde Area Supported Accommodation for Intellectually Disabled) spokesperson, Estelle Shields, says, “The RASAID families welcome Minister Andrew Constance’s announcement that our project will be funded by the State government, fulfilling a promise he made to us more than eighteen months ago. We acknowledge his courage and integrity in making our ‘dare to dream’ development become a reality. We are elated.”

RASAID has been chosen to pilot a new model of supported accommodation in which a cohesive group of intellectually disabled people live together in a cluster setting within the local community they know.Their parents will oversee their adult child’s gradual and humane transition out of the family home and into the new environment.

RASAID believes that its model, favored by thousands of families of intellectually disabled people, will be a template for many similar developments. A key feature of the RASAID model is that the families are philosophically united and committed to finding local, appropriate and responsive accommodation that will meet the needs of their adult children, while allowing a high level of family governance and community involvement.

The group believes that the success of its years of advocacy will bring hope and encouragement to families on waiting lists for supported accommodation. If the proposed National Disability Insurance Scheme becomes a reality later in the year, it is expected that many families will follow the RASAID lead and form groups to pool funding, in order to secure the best outcomes for their disabled members.

There has been no announcement yet as to the location of the accommodation in Ryde.

To find out more about the members of RASAID and their stories: www.rasaid.org.au

The NSW Government's media release (2/6/2011) on the RASAID funding:

Pilot Program for Individualised Funding
The NSW Government has announced $3 million for RASAID, the Ryde Area Supported Accommodation for Intellectually Disabled group, to assist them in a pilot program for supported accommodation.
The Minister for Disability Services, Andrew Constance, said that this would enable each of the 19 individuals to determine their own future, using funds provided by the Government.
"The families from RASAID were given false hope by a succession of Labor Disability Services Ministers, who had this proposal on their desks for years, but did nothing," Mr Constance said.
"The O'Farrell Government has done more for RASAID in 10 weeks, than Labor did in 10 years."
RASAID will be allowed to choose the care packages that best suit their children's needs.
"Instead of families waiting for their child's placement in a group, RASAID will be able to determine the model of care their children want and shape it themselves," Mr Constance said.
"We want to give people with a disability and their families more control over their lives into the future."
Ryde MP Victor Dominello has thanked Minister Constance for his leadership and RASAID for their strong advocacy.
"For several years, the families from RASAID have been calling out for supported accommodation for their adult children," Mr Dominello said.

Down Syndrome NSW e-Update, June 2011

The June 2011 issue of our monthly information bulletin and listing of events, the Down Syndrome NSW e-Update is now available online.

Quarterly print publications (Voice and Down Syndrome NSW News and Update) are in the mail this week (really!) to members and subscribers.

 Growing older with Down syndrome is a quarterly news sheet - an extract is included in the current issue of Down Syndrome NSW News and Update, or you can download the unabridged edition of Issue 4, Winter 2011, here.  It is available in print upon request - please call Down Syndrome NSW on 9841 4407.

Christian on the front page!

12 yr old Christian Ridey is on the front page of the Northern District Times today, in a story about his participation in the local Little Athletics program, and his Dad, Marc's dedication as their coach.

Christian is this week’s Northern District Times Junior Sports Star, sponsored by Rebel Sport and Event Cinemas, and Lisa Ridey also nominated her husband for the Contribution to Sport Award.

Click here to read the full story.

Beyond Vision

One of our administrative staff, Nidhi Shekaran starred with other vision impaired actors The Window on Saturday May 29 at Fairfield.  Deb Cameron did a terrific interview on ABC radio with one of the ensemble, Beyond Vision. You can read the story and hear the interview on this online here.

Good on you, Nidhi!