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.